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Patient Advocacy - Giving Voice to the Patient

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When you fall ill, you are likely to be scared and confused. While your doctor can provide you with medical care, patients need much more than just prescriptions and pills. They need: …

When you fall ill, you are likely to be scared and confused. While your doctor can provide you with medical care, patients need much more than just prescriptions and pills. They need:
 Emotional support and hand holding
 Information to understand their disease and to explore different treatment options
 Protection against medical errors and ensure care is being properly coordinated
 Help with filling up forms and claiming reimbursement from the insurance company
 Help in communicating efficiently with doctors, getting a second opinion and navigating a hospital’s labyrinthine maze

This book explains what patient advocacy is, what patient advocates do and how they can help patients. Anyone who is ill or wants to help a person who is ill will find this book a useful resource. We all need a helping hand especially when we are sick !

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  • 1. Patient Advocacy Giving Voice to Patients Dr Aniruddha Malpani
  • 2. All rights reserved. Patient Advocacy - Giving Voice to Patients Copyright - Dr Aniruddha Malpani Aniruddha.malpani@gmail.com Price: Rs 300 HELP - Health Education Library for People Ashish Tardeo Bombay 400 034 India www.healthlibrary.com
  • 3. Table Of Contents Foreword..............................................................................................................................................7 Introduction: The Role of a Patient Advocate........................................................................... 11 How This Book is Organised........................................................................................................ 17 SECTION 1 UNDERSTANDING THE RIGHTS OF PATIENTS...................................... 19 . 1. What Rights Do Patients Have ?.............................................................................................. 21 2. The Right to be treated with Respect and Dignity.............................................................. 25 3. Right to Full Disclosure and Information............................................................................... 27 4. Right to Simplified Information................................................................................................ 31 5. Right to Privacy and Confidentiality....................................................................................... 33 6. he Right to Informed Consent T in a Clinical Trial.................................................................................................................35 SECTION 2 PATIENT ADVOCATE’S RESPONSIBILITES TOWARDS CRITICALLY ILL PATIENTS ............................................................................. 39 7. Caring for the Seriously-ill........................................................................................................ 41 8. The Problem of Defining Death............................................................................................... 47 9. How to Deliver Bad News....................................................................................................... 51 10. Caring for the Bereaved.......................................................................................................... 57 SECTION 3 WHEN YOU ARE YOUR OWN PATIENT-ADVOCATE............................. 61 11. How I Became a Patient Advocate........................................................................................ 63 12. How to be Your Own Advocate............................................................................................ 67 13. Researching and Becoming an Expert.................................................................................. 71
  • 4. SECTION 4 THE ROLE OF PATIENT-ADVOCATES IN HOSPITALS ........................... 75 14. How Advocates Can Build Trust between Patients, Doctors and Hospitals............... 77 15. Family Physicians as Patient Advocates................................................................................ 81 16. The Patient Advocate as Patient Guardian.......................................................................... 85 17. Patient Advocates in Biomedical Research.......................................................................... 91 18. Improving the Hospital Experience for a Patient ....................................................................................................................97 19. Meeting the Special Needs of Patients............................................................................... 103 20. Engaging Patients to Improve Treatment Outcomes.................................................................................................. 107 21. How Patient Advocates Can Promote Medical Tourism................................................ 111 SECTION 5 IN THE EVENT OF MEDICAL NEGLIGENCE .........................................113 22. Helping the Patient File a ComplaintUsing the Law to Strengthen the Patient’s Voice.............................................................. 115 23. Dealing With Angry Family Members................................................................................. 121 24. Managing Conflict of Interest .............................................................................................. 123 SECTION 6 MEDIATING WITH THIRD PARTIES............................................................127 25. Mediating With Insurance Companies............................................................................... 129 26. Arranging Concierge Services ............................................................................................. 131 27. Facilitating A Second Opinion.............................................................................................. 135 28. Providing Access to Alternative Treatment ...................................................................... 139 SECTION 7 THE PATIENT-ADVOCATE AS A PROFESSIONAL ..................................143 29. Becoming a Professional Patient-Advocate....................................................................... 145 30. Setting Up Shop and Expanding Your Business................................................................. 151 31. How to Market Your Patient Advocacy Business ............................................................ 153 32. Summing Up............................................................................................................................. 157 33. Additional Resources.............................................................................................................. 161
  • 5. Contributors Dr. Jaya Bajaj did her undergraduate medical training (MBBS) in India and MD in Family Medicine from USA.With her experience of practicing medicine in the West and the East, she strongly believes that “Medicine is more of an art than science”. She believes in empowering and educating physicians and patients alike and is deeply passionate about healthcare technology and role of social media in healthcare. She also has a Masters degree in Public Health and a Management degree from IIM-Bangalore and is founder of HealthRadii (www.healthradii. com) which is an online platform for thought-leaders and thinkers in healthcare and is an attempt to initiate dialogue on current issues in Indian healthcare. Connect with her on Twitter: @HealthRadii David J. Foster is Senior Director of Solution Innovation of Healthwise (www.healthwise. org). David’s life focus is to give people the power to improve the world around them through democratized media. David has applied his entrepreneurial background to help Healthwise reinvent health education approaches through the use of new forms of media, shared decision making and integrating patient generated health information into clinical records. He currently is focused on researching consumer use of social media for health and advance care. David received a B.A. in Biology from Brown University. Donald W. Kemper, MPH, is the founder and CEO of the non profit Healthwise. Mr. Kemper is a passionate advocate for raising the quality of patient engagement. He has co-authored five medical self-care and health promotion handbooks that have sold more than 35 million copies, including Information Therapy: Prescribed Information as a Reimbursable Medical Service. He has presented at numerous conferences, and articles on Mr. Kemper and his work have appeared in The Wall Street Journal, The LA Times, Health Forum Journal, and other health industry and consumer publications. Since its founding in 1975, Healthwise has helped people make better health decisions over a billion times. v
  • 6. Dr Aniruddha Malpani is an IVF specialist who passed out from Bombay University, winning over 20 gold medals during his academic career. He founded runs the world’s largest free patient education library, HELP, at www.healthlibrary.com. He has authored 5 books – How to Get the Best Medical Care (www.thebestmedicalcare.com); Successful Medical Practise; Using Information Therapy to Put Patients First; Decoding Medical Gobbledygook; and How to Have a Baby. His passion is patient empowerment; and he believes that using Information Technology to deliver Information Therapy to patients can heal a sick healthcare system (www.puttingpatientsfirst.in). He is an angel investor in Plus91 (www.plus91.in) a company which provides websites for doctors; and PEAS (www.peasonline.com), India’s market leader for creating digital media for patient education. Dr Manju Padmasekar, a summa cum laude PhD in Human Biology from Justus-LiebigUniversity, Giessen, Germany. She is a biomedical researcher who is presently working as a post-doctoral fellow in the same university. She works in the field of stem cells, with special focus on using them for treating type I diabetes. Her email is manjupadmasekar@ yahoo.com. Dhivya Ramasamy, is a Faculty Associate at LAICO, Aravind Eye Care System (www. aravind.org) Madurai. She anchors the management training programmes at LAICO. She has been actively involved in consultancy projects to enhance eye care delivery; working with several eye hospitals in New Delhi, Andhra Pradesh and Mexico. An MBA from Thiagarajar School of Management, she has been instrumental in developing the Aravind Patient Feedback System that is a combination of patient feedback surveys, structured patientstaff interaction and feedback provision to the management to facilitate improvement of the patient services. Prabhakar Rao A textile graduate from the Bombay University, Prabhakar Rao established a charitable trust, Jeet Association for Support to Cancer Patients (JASCAP, www.jascap. org) to help cancer patients. The trust is active in the publication and distribution of patient information on cancer and in providing financial assistance for their treatment and counseling. He is assisted in this endeavor by wife Neera, their two daughters Suchita and Supriya and a small band of employees, besides a larger group of dedicated volunteers. Radhika Sachdev has nearly 20 years of experience in the media industry. She has worked with all the big banners such as Times of India, Hindustan Times, Indian Express and The Pioneer. She has handled news development and editing at various media houses. She now works as an independent editor, content developer (www.writesolutions.co) and consultant to a host of domestic and overseas clients. She can be reached at sachdev. radhika@gmail.com.
  • 7. Foreword A dvocacy is an unfamiliar word in the Indian healthcare sector. For most people, the word advocate conjures up the image of a lawyer - and for most doctors, an advocate is the dreaded enemy who files lawsuits for medical negligence against them. In reality, an advocate is just someone who stands up for you and helps you in claiming your rights. Parents, for example, have always been advocates for their children. How does this apply to the healthcare field? When you fall ill, you are likely to be lost and confused. While your doctor can help provide you with medical care, patients need a lot more than just prescriptions and pills. They need: 99 Emotional support and hand holding 99 Help with doing research to explore options and verify that the doctor’s advice is correct 99 A guide who acts as a sounding board 99 Help with filling up forms and claiming reimbursement from the insurance company 99 Help with talking with doctors, co-ordinating care with a team of specialists, getting a second opinion and navigating a hospital’s labyrinthine maze VIPs get all this as a matter of right of course, but ordinary patients don’t. In the past, the role of a patient-advocate was automatically assigned to the elders in the family, who had a lot of experience. Today, with the breakup of the traditional joint family structure, this role is best discharged by trained professionals. As healthcare becomes increasingly complex and expensive, patient advocacy has evolved into a new discipline.While there are few professional patient advocates, all of us perform this function when we help to take care of someone who is ill, but because it is such an unfamiliar role, we may not know how to perform it effectively. As we all know, doctors and hospitals can be intimidating! 7
  • 8. Patient Advocacy Giving Voice to Patients When you are ill, you need someone who will talk for you and talk to you - an independent trusted, wise advisor, who is empathetic and rational enough to help you to take the right decisions. Patient advocates function as a communication bridge between doctors and patients and help patients to access quality medical care. A patient advocate will make you feel safe and well-cared for during your difficult hour because he will go that extra mile to make sure that you get the best care possible. He provides a ‘’by your side’’ service, in which he shadows you to ensure you have an ‘’extra set of eyes and ears’’ monitoring your care. In a perfect world, there should be no need for a patient advocate, since doctors, by the very nature of their job, are already advocates for their patients. Unfortunately, the need for a patient advocate arises all too often, because doctors and patients no longer seem to be one the same page. There are several reasons for this. First, doctors are extremely pressed for time. When you know that you have a waiting room full of patients, it’s very difficult to engage in an open-ended conversation with one patient. It’s much easier to announce the diagnosis, pronounce the treatment and send the patient on his way, no matter if he is confused or distraught. Doctors just don’t have the luxury of time to be able to hand-hold their patients anymore, or give them a shoulder to cry on. Second, doctors love using medical gobbledygook and often forget the impact their words have on their patients. The doctor might think she has done a good job, when the reality is that the patient was so distraught by the diagnosis that he could not neither process the information provided or understand the doctor’s medical jargon. Finally, many doctors are simply not paying as much attention to their patient as they should. They order too many tests, don’t look at all the results and don’t listen to what the patient is telling them. These doctors can become very attentive when they realize that someone else who is knowledgeable is monitoring a patient’s care. Patient advocates provide a variety of benefits: 99 Many have medical training and some are doctors. Knowing that another medical professional is watching over a patient’s care often makes a doctor more careful. 99 Patient advocates can interpret complex medical information for patients. Some doctors simply can’t or won’t explain things in a way that a patient can understand. 99 Patient advocates can transmit important information back to the physician in a way that the doctor can understand. Patients, often because they are upset, have trouble communicating their needs or getting to the point. Since patient advocates have 8
  • 9. Foreword medical knowledge, they can sift out irrelevant information and quickly provide the doctor with an effective summary. 99 Patient advocates can brainstorm with physicians in a way that the patient cannot, so that they can forge a partnership which helps the patient to get the best possible medical care. This book explains what patient advocacy is, what patient advocates do and how they do it. Anyone who is ill or wants to help a person who is ill will find this book a useful resource.We all need a helping hand when we are sick. 9
  • 10. Introduction: The Role of a Patient Advocate The “go to person” who can guide you through the healthcare maze Patient advocates act as guardians of patient’s rights : 99 With their inside knowledge of how a healthcare system works (or does not work) 99 Their access to leading doctors 99 Their ability to cut through hospital red-tape and make sense of medical jargon 99 Their skill in sifting through medical research and translating this information into simple language 99 Their compassionate support; and 99 Their capability in talking confidently to doctors without getting bullied or cowed down Patient advocates are able to provide an invaluable service to a patient at the most crucial time of his life. Depending on who assumes the role of a patient advocate, patientadvocates can be classified as: Your Friend in Need A patient advocate is not an adversarial position. It doesn’t mean rushing out and getting a second opinion on every routine matter, or conducting your own research and confronting a healthcare professional with your findings. It merely implies acting as a wise gobetween between the healthcare provider and the patient. Self-advocates: If the patient possesses adequate medical knowledge and if his health permits, he can function as his own advocate. Informal advocates: When a family member- typically a spouse, sibling, parent or friend takes on the role of a medical advisor. Professional advocates: A social worker, nurse or another health professional employed either by the hospital by the family to act on behalf of the patient. 11
  • 11. Patient Advocacy Giving Voice to Patients When you (or a family member) get admitted into a hospital, please inquire if the hospital has a patient advocate on board and what services he can provide. If not, you should consider hiring one. Just as a lawyer helps you with all matters legal and brings your case to trial before a magistrate, a patient-advocate can highlight your concerns to a doctor when you are feeling unwell, frightened and may not be able to understand what your doctor is saying, simply because he is busy and rushed for time. Good Communication If you are privileged to be selected as a patient’s advocate, Helps understand that you are taking on a big responsibility that may require you to: “If we can establish more communication among Make yourself available 24/7 - you must be willing to physicians, nurses, and make the time to do the job right. administrators, then I believe the quality of health care will Develop patience and understanding - know that improve by leaps and bounds.” there will be unending chores and that you may be called on to run errands for the patient at all odd-hours Peter Cornell of day and night. You will need patience and maturity to deal with all kind of anticipated and unanticipated medical exigencies. Become an expert in the shortest possible span - you may need to sift through pages and pages of medical documents; organise and summarise these ; and try to make sense of medical journal articles written in the densest prose. In addition, you may need to read up on the internet; subscribe to medical databases; consult with medical experts; refer to library resources and discuss issues with doctors, specialists, The Skills of an Advocate and other medical staff; and liaise with family members. This can be a challenging exercise, and you need to be “If you look at it from the systematic and well-organised if you want to be effective business case, patient advocates in this role. need to have advanced training in conflict resolution and have What services do patient advocates offer? a firm understanding of the They offer a wide variety of services, including providing medical world to help families medical assistance, insurance assistance, home health through critical times. It’s a assistance, elder and geriatric assistance and legal help. complex role that requires a In order to discharge these duties they need the ability special skill set.” to: Maack-Rangel 12
  • 12. Introduction: The Role of a Patient Advocate Dispel myths and provide patients with curated, trustworthy information, so that they understand their diseases and treatment options and don’t get misled by quacks. Cut the red-tape because they understand the hospital hierarchy. With the assistance of a patient-advocate you can get prompt and efficient care without getting bogged down by bureaucratic hassles. Build relationships: A patient-advocate not just acts as a friend, philosopher and guide to the patient, he is also able to communicate intelligently with the doctor, who in turn treats him as a trusted, reliable partner he can collaborate with, so the patient gets better sooner. Since a patient-advocate is a vital communication bridge between the two, the doctor must see him as an ally, rather than as a meddlesome adversary. The better the relationship between the two, the easier it is for them to function effectively. In India, the word advocate is synonymous with a lawyer and therefore often carries a negative connotation. But don’t forget that an advocate is a professional who is trusted to fight and stand up for Steve Jobs and Patienthis client’s rights. As a patient, it’s always useful to Advocacy – or the Lack of it! have someone who is vigilant by your bedside to make sure that an overworked nurse is giving you The following Saturday afternoon, the right medicines, at the right time. It’s useful to Jobs allowed his wife to convene a have a well-informed professional scan the web and meeting of the doctors. He realised find out more about your specific condition. And that he was facing the type of it’s important to have someone take notes during problem that he never permitted at a doctor’s visit and ask the right questions on your Apple. His treatment was fragmented behalf. rather than integrated. Each of the My friend’s mother’s case offers an instructive example. Admitted to the hospital for a laparoscopic removal of the gall bladder, she was diagnosed with septicemia. A few days later, when she found that the nurse attending to her was ignoring her, she urgently summoned her daughter and asked her to fetch a paper and pen. In a highly agitated state, the patient began scribbling notes, saying she was losing sensation in her right hand. The concerned daughter alerted the doctor on duty and it was discovered that the patient was actually having a brain stroke. Her daughter acted as an advocate, and was able to prevent further brain damage. 13 myriad maladies was being treated by different specialists – oncologists, pain specialists, nutritionists, hepatologists, and hematologists – but they were not being coordinated in a cohesive approach… “One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,” [Laurene] Powell [Jobs’ wife] said. Patient Advocacy on the Cusp of the Tipping Point by Trisha Torrey
  • 13. Patient Advocacy Giving Voice to Patients A patient-advocate wears multiple hats A patient-advocate is a crucial component in the healthcare delivery chain. Her presence and involvement can ensure the best possible treatment outcome for the patient. Among some of the tasks that she needs to complete are: 99 Network with doctors; take appointments, coordinate diagnostic tests, and collect reports Institutional Support 99 Get specialists to talk to each other around the hospital bed 99 Arrange for blood products 99 Buy medicines 99 Fill in various medical forms and complete the insurance paperwork. The good news is that being an effective patient advocate does not require specialised medical training - just basic communication skills, a problem-solving mindset, the ability to empathise with the patient and the family and the willingness to shoulder some extra responsibility. When you find yourself playing this role for family and friends with chronic conditions, help them look for a physician (usually a specialist) who has a strong track record in treating patients with their condition. If the condition has not yet been diagnosed, help them find an empathetic primary care physician who can provide individualized attention. The Professional Patient Advocate Institute in the UK (www. patientadvocatetraining.com) offers high-level, in-depth training to those currently practicing as advocates and provides an entry point for those who desire to transition to an emerging practice, or those who want re-enter the field from retirement. The Institute serves independent patient advocates, in-hospital patient advocates, employer groups and others interested in ensuring effective, consumer-driven healthcare. The Institute offers professionals who have an understanding of the healthcare system the opportunity to improve their skill sets so they can truly advocate for the consumer and their families to improve the patient experience and ultimately contain healthcare costs. One aspect that you must remember about a doctor-patient relationship is a doctor makes a recommendation, but it’s the patient who has to make the final decisions. As an advocate, you can help him make the right decision. Make your concerns and intentions known As a patient advocate, your first responsibility is to make sure that all the key people know your concerns related to the patient’s condition and treatment plan. The medical team must 14
  • 14. Introduction: The Role of a Patient Advocate understand that you are concerned about the patient’s health, welfare, progress, and rights. You are NOT trying to interfere with their work - your goal is simply to help them carry out their tasks in a professional, responsible manner, consistent with the patient’s best interests and wishes. Good doctors appreciate the assistance and insight which a skilled patient-advocate can bring to the table. The nursing staff should understand that it’s the advocate’s job to monitor and oversee a patient’s care, to ensure that the patient is getting the care that the doctor has prescribed. Towards this end, the advocate must share his contact information with key persons and contact them proactively on a regular basis, rather than waiting for them to contact him in the event of an emergency. He must monitor the patient’s progress regularly; remain positive, co-operative, caring and knowledgeable. He must be firm, but not demanding; active, but not antagonistic; concerned, but not confrontational. In their article, “The Voice of Florence Nightingale on Advocacy,” Louise Selanders and Patrick Crane point out that Nightingale was an excellent patient-advocate. She established nursing as a profession and fought concertedly for the rights of diverse set of patients. She believed in equality of care, regardless of religion or faith, and was a crusader for basic human rights. If you are a patient Your advocate can be a spouse, a child, a close friend, a parent or a concerned relative. It is best if your advocate is familiar with your medical condition and your symptoms. Ideally, he should accompany you every time you see your doctor. A doctor is likely to give you more time if you have a representative with you. Interestingly, research shows that if you are a woman, choosing a male advocate will help you wield more clout with the healthcare system. Quiz Time: Would You Make a Good Patient-Advocate? Instructions: Please choose your response from the options provided with each question: 1.The role of patient-advocate implies: a. Speaking up for the patient where needed b. Making crucial decisions for the patient c. Excluding the family from the decision-making process d. Not discussing the patient’s concerns with other healthcare workers 15
  • 15. Patient Advocacy Giving Voice to Patients 2. he legislation that finally recognised patients as consumers of healthcare T services was: a. Monopolies and Restrictive Trade Practices Act, 1969 b. The Consumer Protection Act, 1986 c. The Insurance Act, 1938 d. None of the Above 3. Patient advocacy can result in which of the following consequences: a. Frustration with an inefficient and baffling healthcare system b. Punishment for the guilty doctors and nursing staff c. Lowering of the dignity of the patient d. Better quality care for the patient 4. Patient advocacy is meant to improve: a. Patient safety b. A nurse’s salary c. A nurse’s workload d. Hospital’s income 5.The key skill needed in a patient-advocate is: a. Effective communication b. Willingness to take risk c. Focus on the patient d. All of the above Let’s check your answers: a. b. d a. d 16
  • 16. How This Book is Organised T his book has seven sections, each covering an important aspect of patient advocacy. Starting with a brief introduction to this young profession, we take the discussion forward to Section 1 that explains what rights patients have. The entire advocacy movement is focused on the protection of the rights of a consumer of healthcare services. Section 2 talks about the advocate’s responsibilities in taking care of a critically-ill patient, delivering bad news and taking care of the bereaved family. Section 3 is about self-advocacy and how to become an expert in this area. Section 4 is about an advocate’s role in hospital, and how he can contribute to improving a patient’s in-hospital experiences and strengthening the hospital brand. Section 5 deals with crisis-management in the event of a medical negligence – how to file a complaint against a doctor and the hospital, how to navigate the litigation process, how to deal with angry family members and how to manage conflict of interest between the various stakeholders in the healthcare system. Section 6 is about an advocate’s role in mediating with third parties, such as insurance companies, concierge services and alternative care providers. The final part is Section 7 that deals with how a patient-advocate can become a service provider; the training needed, and how to set-up your independent practice. Finally, the Resources section has forms and documents that an advocate may find useful. Your feedback and comments for improvement of the subsequent editions of this book are welcome. Please send your comments to - aniruddha.malpani@gmail.com 17
  • 17. SECTION 1 UNDERSTANDING THE RIGHTS OF PATIENTS
  • 18. 1. What Rights Do Patients Have? Under the Indian healthcare system, a patient enjoys several rights. It’s the advocate’s responsibility to understand them all and tailor their services accordingly T he Supreme Court of India set aside a writ filed by the Indian Medical Association (IMA) in 1995 and decreed that the medical profession is a “service” that should be covered under The Consumer Protection Act, 1986. This implied that patients are to be considered as consumers of healthcare services. A lot of water has flown down the Ganga since then. Although malpractice still happens, thanks to the fact that medical services are now covered under The Consumer Protection Act, 1986, there is evidence that patients’ rights are better protected these days. A landmark judgment An advocate’s checklist for processing a Patient’s Complaint about medical services ff Name and Address of the complainant in full. ff Name and Address of the doctor/ surgeon/hospital/nursing home, pharmaceutical company etc. ff What is the primary cause of the complaint? ff Particulars of the complaint in detail, along with supporting documents. Spell this out in chronological order ff Relief prayed for – for example, In the famous V. Kishan Rao Vs. Nikhil Super replacement of malfunctioning Specialty Hospital and another, dated March device/removal of defect / 8, 2010, the Supreme Court did not even compensation for expenses incurred ask for a medical expert’s opinion, when it physical/mental suffering, if any. became clear that the patient suffering from intermittent fever and chills was wrongly ff Ensure that the patient has a copy of all the documents with him. treated for typhoid instead of malaria for four days, ultimately resulting in her death.The apex court upheld the decision of the District Forum in awarding compensation to the victim’s family, when investigation by another hospital to which the patient was shifted in a very critical condition on day 5 revealed that the doctor had overlooked the fact that the Widal Test for typhoid was negative, whereas the test for malaria parasite was positive in her case. This was 21
  • 19. Patient Advocacy Giving Voice to Patients sufficient evidence for the District Forum to conclude that it was a case of wrong diagnosis and treatment. Throughout this trial, the deceased’s husband (the petitioner) was guided by several patient-advocates, who didn’t necessarily have lawyer’s degrees. A huge leap for patients In November 2012, a renowned cancer surgeon was asked to deposit a fine of Rs 50,000 with the metropolitan magistrate’s court in a case of “medical negligence.” This case makes for interesting reading, because it highlights the fact that the lack of a good ‘bedside manner’ in the doctor was perceived as a personal snub by the patient’s husband, and this slight caused him to pursue the matter doggedly through the labyrinthine Indian judicial system for many years. Ironically, in this case, the deceased was not even officially registered as the surgeon’s patient. Yet her husband hauled the surgeon to court and has been ‘patiently’ fighting this battle for over two decades, simply because he is upset that the surgeon allegedly did not attend to his wife in the operation theatre (where he was present as a bystander) and did not bother to meet the family after the surgery. Throughout the course of his fight, the patient’s husband has steadfastly maintained: “Had the doctor apologized or even shown some remorse, I would have forgiven him.” What is an Advocate’s Role in the Healthcare Delivery System? ff Be an active partner in creating the patient’s treatment plan. ff Ask questions. ff Keep appointments. ff Be respectful towards other people. ff Follow the hospital’s rules. ff Ensure that the patient follows the doctor’s instructions. ff Share information with the patient and his family ff Record changes (improvements or deterioration) in the patient’s condition and keep the doctor and his family well-informed about these changes. (This is by no means an exhaustive list) Even though this may come across as an extreme example of a patient’s expectations from a doctor, the fact cannot be denied that a doctor’s job is ultra-sensitive and as health care providers, the buck stops with them. Further, as with the delivery of any service, doctors are accountable for deficient deliveries, especially since they are dealing with human life, where decisions once made are often irreversible.The demand for efficient and error-free service is therefore legally and morally justified in their case, especially as surgeons these days command a hefty premium for the services they render. The low level of health literacy in this country tilts the balance unfairly in favor of doctors, who are quite aware of their patient’s limited means and inadequate understanding of health issues. Even the well-educated and the well-heeled are vulnerable, and withholding crucial 22
  • 20. 1. What Rights Do Patients Have? information is a common strategy that the medical fraternity deploys to prevent a patient from seeking a second or third opinion from another doctor. Often the patient and her family place blind faith in one doctor, only to have their hopes dashed. While busy doctors lament that they do not have enough time to look into individual complaints, patients are unhappy over how long they have to wait to see a doctor - and even when they do manage to get their chance, they are often very dissatisfied about the quality of the doctor’s communication, most of which goes over their head because it’s replete with medical jargon. The Consumer Protection Act 1986 has undoubtedly made it easier for aggrieved patients to seek redressal and sue for compensation but the process is time-consuming and given the huge backlog of cases in consumer courts, the litigation process is tedious, timeconsuming, costly and confusing for lay consumers. Lately, while courts have begun to award handsome damages to the victim, as in the much-cited 2009 case of a computer professional, Prashant S Dhananka who found himself paralysed waist-down after a surgeon ‘accidentally’ damaged his spinal cord during a surgery performed for removal of a chest tumor, and the apex court awarded him Rs 1 crore in damages - such cases are still few and far between. The onus of proving medical negligence largely rests with the patients’ family and that’s where patient advocacy becomes important for receiving safe health care. Medical negligence, defined The Role of Consumer Courts Complaints against doctors can be filed in the consumer courts. The complaint should be written on a simple paper, giving all the details and the compensation demanded. These courts can only give compensation.They cannot penalise the erring doctor. Following are the monetary limits of compensation that can be granted by the consumer courts in India: District Consumer Court: Up to Rs 20 lakh State Commission: Rs 20 Lakhs to Rs 1 Crore National Commission: Above Rs 1 crore All complaints against doctors and hospitals should have an expert medical opinion from another doctor, stating that the complaint is prima facie true and needs further probing.. This can be very hard for patients to get, because doctors are understandably reluctant to criticise a fellow professional. In an oft-cited judgment in Bolam v. Friern Hospital Management Committee (1957) 2 All ER 118, Mc. Nair, L.J. observed: “I must explain what in law we mean by ‘negligence’. In cases that do not require any special skill, negligence in law means - some failure to do some act which a 23
  • 21. Patient Advocacy Giving Voice to Patients reasonable man in the circumstances would do, or the doing of some act which a reasonable man in the circumstances would not do; and if that failure or the doing of that act results in injury, then there is a cause of action.” This in a nutshell is the parameter for defining deficient medical service. The apex court’s definition of patients’ rights According to the Consumer Guidance Society of India, a patient under the Consumer Protection Act, 1986 has the right to be told about his illness and to have his medical records explained. In addition: 99 Patients should be explained what treatments and medicines are being prescribed to them. They should be made aware of the risks and side effects, if any. They have the right to ask questions and clarify their doubts about the treatment. 99 Patients have the right to know a doctor’s qualifications. 99 Patients have the right to be handled with consideration and due regard for their modesty when being physically examined by the doctor. 99 Patients have the right to maintain confidentiality regarding their illness and can expect the same from the doctors. 99 Patients have the right to a second opinion if they are doubtful about the medicines or treatment suggested. 99 Patients have the right to know what a suggested operation is for and the possible risks involved. If he is unconscious or unable to make the decision due to other reasons, informed consent needs to be taken from their nearest relatives. 99 Patients have the right to get a copy of their medical records and case papers on request from the doctor/hospital. 99 If the patient needs to be transferred to another hospital, he has the right to know the reason for this; and also has the right to make their choice of which hospital to go to, in consultation with the doctor. 99 Patients have the right to get a detailed explanation of the bills they are asked to pay. Patient advocates can help patients secure the rights they are legally entitled to in India. The following chapters will explain these rights in greater detail, and how a patient-advocate can help uphold them. Remember Tenzin Gyatso’s wise words, “ It is not enough to be compassionate.You must act”. 24
  • 22. 2. The Right to be treated with Respect and Dignity An advocate’s first priority is to alleviate the patient’s suffering and to help them cope with their illnesses A patient advocate understands that his client is not a laboratory rat. A patient’s right to compassion and kindness from every hospital staff member is undisputed.Additionally, a patient also has the right to voice grievances and complaints and have those redressed promptly. If a patient for some reason can’t do this himself, he can always seek help from the advocate. Healthcare professionals are intimately involved with every aspect of life, right from birth to death. It is the only profession, where no matter what is going on in their personal life, their first priority must be their patient - and as a patient advocate your task is to remind them that their patients come first. They are blessed to be granted such a huge privilege, which is why it is alarming to hear of horror stories about the utterly shabby way in which some doctors treat their patients.What gives them the right to undermine the dignity of a patient? Insensitivity to another’s pain might explain why the rights of respectful treatment and autonomy are being undermined with impunity by today’s health practitioners. Constant exposure to pain and suffering sometimes de-humanizes doctors and nurses - especially when they are 25 Doctors Who Listen Reduce Their Patients’ Pain The late Anatole Broyard, essayist and former editor of the New York Times Book Review, wrote eloquently about the psychological and spiritual challenges of facing metastatic prostate cancer. “To the typical physician,” he wrote, “my illness is a routine incident in his rounds while for me it’s the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity... I just wish he would... give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.”
  • 23. Patient Advocacy Giving Voice to Patients overworked, stressed and burnt out. Respect for the patient should be reflected in every staff member’s action, word and behavior. “Putting Patients First” cannot just be an empty platitude that hospitals print as a mission statement on their websites. The medical staff needs to be specially trained to act with empathy, so they are able to show compassion to patients at all times, even in the most provocative and stress-inducing situations. Let me illustrate this with the case of an elderly man (78), who has a brain stroke and is left with his right side paralysed. He is admitted into a government hospital, where the staff is so overworked or time-strapped, they have little time to indulge a “senile, old man.” They don’t understand that the patient is scared to death about the long-term implications of his immobility, and why he demands so much attention from his attendants. So once, when the patient has the urge to urinate in the middle of the night, he rings the bell for the ward boy, who assumes that the patient is indulging in one of his tantrums, and decides not to show up. After waiting for a few minutes, the patient gets impatient and tries to rise from the bed unaided. He loses his balance, falls off the bed and ends up fracturing his hip bone. Fractures are very common in patients of his age, but the untrained paramedic did not see this coming, eventually leading to an accident that could well have been avoided. Even worse, the fact that it was the ward boy’s tardiness that led to the fracture was hushed up, and the family members remained clueless as to why this complication had occurred. The moral of the story is that even when a patient is unreasonably demanding, the nursing staff has to be patient and understanding. Modern medicine’s emphasis on the technological and pharmacological treatment of symptoms overlooks the fact that recovery from disease and trauma requires healing on all levels: emotional, social, and spiritual. The outcome of a clinical intervention also depends on the manner in which it is provided - and the doctor’s personality is often as important as his technical skill. For example, some patients may be more comfortable receiving individual counseling, while others (e.g. breast cancer survivors) may benefit more from group support, where they are able to share their experiences with each other.These are carefully considered decisions that only an empathetic doctor or advocate would be able to take on the patient’s behalf. It is an advocate’s responsibility to ensure that the care that the patient receives meets with the accepted standards of medical ethics, and that the patient’s dignity is respected. If this is breached, it’s her responsibility to report the matter to the hospital authorities, and have it addressed to the patient’s complete satisfaction. 26
  • 24. 3. Right to Full Disclosure and Information A patient has the right to know why a test is needed; what the expected results are ; how much it costs; and how it can change her treatment options Sample these reported cases reported in the media: I n October 1989, Zairunnisa Parekh got admitted for treatment of a tiny 1-cm stone in her kidney at Jaslok Hospital, Mumbai. She died 35 days later of peritonitis. Her husband Yusuf and son Mushtaq filed a case of negligence against the doctors, stating that the hospital denied them a copy of her medical records. In another such case, Bhagwati Raheja died after a by-pass surgery at Mumbai’s Nanavati Hospital. The deceased’s husband maintained he was refused a copy of his wife’s medical records. Medical Council of India Guidelines on Medical Records The MCI Regulations 2002 state: Indoor records need to be maintained in a standard Performa for three years from commencement of treatment (Section 1.3.1 and Appendix 3). Request for medical records by patient or authorised attendant should be acknowledged and documents issued within 72 hours (Section 1.3.2). On 11 July 2001, Sandhya Karmakar, 36, mother of a ten-year-old boy, died at the SSKM hospital in Kolkata. She had been admitted for appendectomy on 26 June. The surgery went fine, but a surgical mop was ‘inadvertently’ left behind in her abdomen. Surgeon M L Shaha had to perform a second surgery to remedy the error on July 3. A leakage developed and to fix that, a third surgery had to be done on July 7. It was later discovered that the doctor who had performed the appendectomy had left the entire postoperative process, including suturing the wound, to his nursing staff. 27
  • 25. Patient Advocacy Giving Voice to Patients In these, and several other such cases, patients or their families had to seek intervention from the Courts in order simply to access their medical records - documents that were legally their property.When complications occur, hospitals invariably deny wrong-doing and the onus shifts to the patient’s family to prove that what went wrong was a result of the doctor’s or the hospital’s negligence. Without concrete evidence in their possession, this can be almost impossible. Patients and their families often complain that a particular doctor is keeping them in the dark about the diagnosis or prognosis of a disease.A busy doctor, walking away from anxious relatives with nothing more than a pat on The Truth, the Whole Truth, the shoulder (and sometimes not and Nothing but Truth… even that), is unfortunately a very common sight in our hospitals. Patients commonly complain that a Sometimes, withholding the harsh truth from the physician orders a battery of tests patient is not a result of medical paternalism, but or procedures, without explaining arises out of the doctor’s sincere desire to protect why they are needed, how much the patient from emotional distress.. It’s not always would they cost; what results are easy for a doctor to know how much truth the expected; and how these would patient can tolerate and this can create a dilemma affect their line of treatment.When for the doctor, as the following story, “The doctor’s this basic information is not readily word” by R K Narayan illustrates: forthcoming, the outcome can be frustration that leads to growing discontent with the doctor and the hospital. The reporting of several incidents of medical negligence and subsequent cover-up attempts by hospitals and doctors have resulted in patients being better informed about their legal rights. Patients are now demanding a more transparent and accountable doctor-patient relationship. According to a Supreme Court directive, patients and their relatives have the right to be informed and this consent is meant to educate the patient, not Dr. Raman diagnoses his close friend to be critically ill. The doctor knows that the patient has a good chance of recovery if his condition does not deteriorate during the night. Now the ethical dilemma confronting Dr Raman is - should he tell the patient the truth about his dire prognosis, or should be wait until the next morning? The patient has already expressed his wish to write a will. The good doctor is in a fix. He resolves it by deciding to deceive the patient, and tells him that he can easily write the will the next morning, since there is no urgency. The patient is relieved, and survives What is the moral of the story? The doctor needs to use his judgment as to whether or not to disclose information that has the potential to harm the patient. 28
  • 26. 3. Right to Full Disclosure and Information just protect the doctor and hospital. Merely asking the patient to sign a piece of paper thrust in front of him by a nurse on his way to the Operation Theater will not serve the purpose. Patient-advocates can help doctors to build a rapport with the patient, so that there can be a full and frank discussion of the risks and uncertainties which are inherent in any medical treatment. 29
  • 27. 4. Right to Simplified Information Advocates can assist healthcare professions in providing culturallycompetent care to patients I magine lying on a hospital bed - anxious, uncomfortable, waiting for test results and fearing the worst. Now imagine being probed in all the sore places by unconcerned doctors and nurses who wear deadpan expressions as they stop by to take your vital signs, do blood tests, and listen to your chest. Also imagine that the hospital that you have landed up in is in some remote corner of Africa, and you don’t have a clue what the medical staff is saying, and you cannot explain what you are feeling. This is often how poor, uneducated, illiterate patients feel when they First Person find themselves in a large hospital in the city, where everything is unfamiliar and threatening. “If you speak English well, then a doctor will treat you better. If The reasons for healthcare disparities you speak only Hindi and your English is not that good, they Some factors that contribute to health disparities are: look down on you. They think you are a fool.” 99 Persistence of centuries-old racial stereotypes 99 Time pressures caused by increasing case loads An uneducated woman from an Indian village 99 Lack of decision-making skills in the junior health care staff 99 Absence of a patient-advocate in the picture Real or perceived discrimination in hospitals can lead minorities and the poor to mistrust doctors and nurses. The onus is on the healthcare provider, who is the “more powerful actor in clinical encounters” to see to it that such disparities do not occur, and if he fails in this duty, it’s the patient-advocate’s responsibility to step in and correct matters. 31
  • 28. Patient Advocacy Giving Voice to Patients In a recent survey, physicians reported that more than half of their patients do not follow medical treatment as a result of cultural or linguistic barriers. While the majority of doctors surveyed agree that language and culture are important in the delivery of care to patients, only half of the doctors reported having any form of “cultural competency training.” This lacuna is one which a caring patient advocate can fill competently, allowing him to act as a bridge between the doctor and the patient. The need for cultural competence in patient-advocates Cultural competence leads to cultural awareness, knowledge, understanding, sensitivity, interaction, and skill. It necessarily flows from good “communication.” Efficient health care delivery also depends upon health literacy, which varies between different cultural groups. Although poor health literacy can be a particularly thorny problem in patients with low literacy skills, it can also affect patients who think of themselves as being literate. Even doctors sometimes find it hard to make sense of the convoluted language which health insurance companies and hospital administrators use in their forms. A patient advocate can help in decoding this medical jargon. Lay theories of anatomy and physiology can also influence how people interpret and respond to their illness. In Indian villages, women often describe their menstrual blood as “bad” or “toxic”, and are forbidden from entering temples or even their kitchens, when they are menstruating. It is hardly surprising that they have a hard time describing their gynaecological problems to doctors. The presence of an advocate can help transcend such cultural and linguistic barriers. 32
  • 29. 5. Right to Privacy and Confidentiality The 1997 medical ethics guidelines proposed by the National Human Rights Commission debar doctors from sharing a patient’s confidential information for any monetary inducement T he exchange of information between a doctor and patient is always confidential and personal. Confidentiality helps patients to be frank and honest with their physician, which in turn leads to better health outcomes. A good doctor will protect patient privacy, as it helps build trust and bonding between them.The issue of confidentiality needs to be addressed even more urgently with the introduction of electronic medical records, which can be shared easily with the click of a mouse. Although the electronic exchange of health information offers significant benefits, it increases the risk of inadvertently exposing private medical information. The meaning of confidentiality Before You Give Authorisation… It is always important for a patient to read and understand anything he is asked to sign. If he is authorizing a release of his medical records, advise him to ask for the specific purposes for which the information will be used and how long the authorisation lasts. Advice your patients against signing a form that asks them to release their medical records for “all legally valid purposes” without specifying a time limit. Because patients share so much sensitive, private and personal information with their doctor, the duty to maintain confidentiality has been enshrined in the Hippocratic Oath. The International Code of Medical Ethics states that “A physician shall preserve absolute confidentiality about all he knows about his patient, even after his patient has died.” As per the Medical Council of India Code of Ethics Section Clause 7.14, “The registered medical practitioner shall not disclose the secrets of a patient that have been learnt in the exercise of his/her profession except – 33
  • 30. Patient Advocacy Giving Voice to Patients i)  In a court of law under orders of the Presiding Judge; ii)  circumstances where there is a serious and identified risk to a specific person In and/or community; and iii)  Notifiable diseases. It is his duty that he should inform public health authorities immediately about any communicable or notifiable disease. “ Of course, matters become more complex when there is a conflict between the right to privacy and the right to health of another individual. Shh….A Patient Has the Right to Confidentiality Patients need to be confident that the doctor will protect their confidentiality. Thus, if you don’t want your psychiatrist or your infertility consultant to call your secretary to leave a reminder about your next appointment, please make this request in writing. Ideally, information about a patient’s records should not be released to anyone outside of the hospital without the patient’s authorization, unless it’s being shared with another healthcare facility to which the patient is being transferred, or if the release has been ordered by a court. If this is being done under a third-party payment contract for research work on aggregated statistics, information sharing is permissible, provided the patient’s identity is masked. When software engineer, Abdul Mustafa (name changed) tested HIV-positive, he did not want his employers or his friends to know about it. Had the doctor still gone ahead and divulged this information, it would have amounted to a breach of trust and the confidentiality proviso. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) in the USDA made several sweeping changes relating to privacy and confidentiality of medical records. It established privacy procedures, the need to inform patients about these procedures; the need to train employees to follow strict privacy guidelines, and the importance of designating an individual to oversee the healthcare organisation’s privacy initiatives. In India, where such laws don’t exist, it’s important that patients seek the help of patient-advocates in securing their right to privacy and confidentiality. 34
  • 31. 6. The Right to Informed Consent in a Clinical Trial A patient participating in a clinical trial has the right to know all the information regarding the trial, including its potential benefits and risks, so that he can make an informed decision C linical trials are scientific research experiments, conducted on human volunteers in order to find new ways to prevent, detect and cure diseases. Medical science has grown leaps and bounds on the back of such biomedical research. When done properly, such studies are very useful in improving our medical knowledge base. However, not all clinical trials are conducted ethically. This is especially true in India, which is fast becoming an attractive destination for carrying out clinical trials, primarily because we have a huge and diverse pool of patients on whom these trials can be conducted fairly inexpensively. Many of the patients chosen are uneducated, who can easily be exploited by doctors, researchers and pharmaceutical companies, alike. Unethical researchers (who get paid huge sums for signing up as many participants as possible) may exaggerate the benefits of a treatment, offer financial sweeteners, or attempt to play down the risks of the trial. In 1997, the oncology division of the Indian Council of Medical Research (ICMR) carried out an observational study on cervical cancer in Indian women.The study did not have any ethical clearance from the All India Institute of Medical Sciences (AIIMS) from where the subjects were drawn ; nor did the researchers get informed consent from the subjects themselves. Under the ICMR study, 1100 uneducated urban women from Delhi with pre-cancerous lesions were studied between 1976 and 1988.The objective was to study the natural progression of cervical dysplasia to cervical cancer (the most prevalent cancer amongst Indian women) without any medical intervention. So despite the fact that a simple surgery would have removed the cervical lesions, before they could turn cancerous, the women were wantonly left untreated. The outcome was that 62 of these women needlessly developed cancer; and in nine the disease had already spread to other parts of their body. 35
  • 32. Patient Advocacy Giving Voice to Patients In another equally scandalous incident, an Indian scientist attempted to inject the bovine HIV strain into a human subject.This research was also not approved by any ethical body. Likewise there have been reports of a pig’s heart transplant into humans; and controversial trials with mepacrine, an anti-malarial drug that Audio-Video Recording of Consent is injected into a woman’s uterus for Process Will Soon Be Made Mandatory contraceptive purposes, although some doctors suspect it causes cancer. While it is important that clinical trials need to Although every hospital unit is be allowed in India, these have to be fair and supposed to have its own ethical transparent. With a view to curb the practice of committee, in our country most are procuring illiterate subjects and making them sign defunct bodies. The National Human consent forms which they do not understand, Rights Commission (NHRC) the Union health ministry is planning to amend guidelines propose that a research the Schedule Y of the Drugs Cosmetics Rules group must provide human subjects to make audio/video recording of informed with printed literature, explaining in consent process in clinical trials mandatory. simple, non-technical language, the The amendment seeks to ensure that the trial purpose of the study; details of the subjects are adequately informed about the procedure; the risks involved; the failure of investigational products. The purpose is financial or other interests of the to make participation in clinical trials voluntary. researcher; and a commitment to treat, completely and free-of-cost, any (Source: http://pharmabiz.com/ArticleDetails. aspx?aid=71218sid=3) complication that may arise during the course of the trial. The subject too has to certify in writing that she has understood the document and is volunteering to participate in the research, without the promise of any monetary inducement that is not permitted under the Indian law. There are a few other government bodies that monitor clinical trials such as the Drug Controller of India and the Clinical Trial Registry in India (CTRI). Nonetheless, the Supreme Court recently expressed reservations about the unethical way in which most clinical trials are being conducted in the country, and has directed the Ministry of Health to formulate proper guidelines on this, to protect patients’ interests. According to existing rules, an ethically sound clinical trial: 99 Will aim for the enhancement of medical knowledge 99 Will have strong scientific validity 99 Will recruit participants fairly 99 Will have a favourable risk-benefit ratio 36
  • 33. 6. The Right to Informed Consent in a Clinical Trial 99 Will have people who independently review, approve, amend or terminate it 99 Will obtain informed consent from its participants 99 Will respect the participants privacy and will strive hard to protect their wellness and rights Role of patient advocates in clinical trials Patient-advocates can play an extremely important role in clinical trials. Among other things they are required to: 99 Make sure whether the information about the trial is presented in a format which is easily understandable to the patient 99 Assist the research team in developing relevant educational materials about the trial in lay-friendly terms that is simple and easy to understand 99 Identify and address potential ethical issues in the trial 99 Promote patient safety and confidentiality 99 Assist the research team in obtaining valid informed consent from the patients, recruited in the trial QUIZ TIME: Informed Consent Quality Assessment Questionnaire Use this form to gauge patient’s understanding of their participation in clinical trials 99 Do you feel that you have been informed how long your participation in this clinical trial will last? 99 Do you think that all the treatments and procedures that the investigator proposed for you are the best for your disease? 99 Do you understand what “randomisation” means? 99 Do you know that no direct medical benefit will derive to you from your participation in this clinical trial? 99 Are you sure that your participation in this trial will not involve any additional risk or discomforts? 99 Do you know that because you are participating in a clinical trial, it is possible that the study sponsor, various government agencies, or others not directly involved in your health care could have access to your medical records? 37
  • 34. Patient Advocacy Giving Voice to Patients 99 Do you know that the consent form you signed lists the names of the contact persons, who must answer any of your questions or concerns about the clinical trial? 99 Do you know that the consent form you signed describes how you will be covered by insurance if you are injured or become ill as a result of participation in the clinical trial? 99 Do you understand that if you do not want to participate in the clinical trial you are free to refuse to sign the consent form? This will not affect the quality of medical care you receive, so you do not need to be scared that your doctor will get angry or upset if you refuse to participate. 99 Do you understand that you are not obliged to remain in the clinical trial if you decide to withdraw at any point of time? 99 Explain in your words the purpose of the clinical trial to which you have consented to be a subject. A patient-advocate who uses such questionnaires with patients who have been recruited to participate in a clinical trial will help to protect the patients; and will also ensure that the research team is never caught on the wrong side of the fence. 38
  • 35. SECTION 2 PATIENT ADVOCATE’S RESPONSIBILITES TOWARDS CRITICALLY ILL PATIENTS
  • 36. 7. Caring for the Seriously-ill Patient-Advocates can help a patient or his family make important decisions in an emotionally-charged medical scenario I n the ICU (Intensive Care Unit), treatment decisions are based not just on medical grounds or statistical probabilities. They are emotionallycharged decisions, with significant cost implications, that a patient advocate can help the patient deal with. The clinical director of an Intensive Care Unit (ICU) once described a dilemma he faced in having to decide whether to withdraw intensive care treatment from a woman in her mid-seventies. The patient had undergone emergency surgery to repair a ruptured aorta, and subsequently developed pneumonia and renal failure. She was sedated, placed on a ventilator and treated with dialysis. Days passed during which the medical team could not agree on the next course of action - whether to withdraw the life support system and allow the woman to die peacefully, or continue the intensive care at a steep cost to the patient’s family. Was the care futile? Or did they have a chance to save her life? Since India, which see if euthanasia (mercy killing) is illegal in eventually a compromise was reached, involved waiting a further 48 hours to continued ‘full’ treatment produced any 41 What Can an Advocate Do for Critically-ill Patients? ff Intervene when the best interests of the patient are potentially in jeopardy. ff Help the patient obtain necessary care. ff Ensure that the values, beliefs and rights of the patient are respected. ff Provide education and support to help the patient or his family makes important decisions. ff Support the decisions of the patient or his family if they decide to shift the patient to another healthcare facility. ff Monitor the quality of care that the patient receives. ff Act as a liaison between the patient, his family and healthcare professionals.
  • 37. Patient Advocacy Giving Voice to Patients improvement in her condition. If not, the doctors decided they would not make any aggressive efforts to save her life and would wean her off the ventilator in a careful, phased manner. This was an emotionally charged decision – as all such “end of life” conversations can be both for the doctor and the family. Eventually, a patient-advocate was called in, who served as a useful communication bridge between the two parties. The doctors explained the medical facts of the case to the advocate, who in turn, explained them to the family, in more simplified terms. She gave them enough time to process this information; was patient and answered all their doubts and questions; helped them to play out possible scenarios and outcomes; allowed them to negotiate with each other; and acted as a neutral referee when there were heated arguments. The family members felt comforted that their voices were being heard by the medical team and that they were participants in the decision-making process. Everyone was actively involved and they eventually reached a decision that they were all comfortable with, so she could die in peace, without meddlesome interventions. If they had been left to their own devices, without any support from an advocate, the family may not have been able to make a well-informed decision and would have been forced to passively watch their loved one suffer pain and misery while she progressively deteriorated. When framed this way, the family did not feel guilty that they were abandoning the patient or allowing her to die, just to save their money. They realised that this was a decision they were all making, in her best interests, because the chances of her being able to lead a productive life were so slim. Such critically-ill patients can be found throughout a hospital - in emergency departments, post-anesthesia recovery units, interventional cardiology labs, pediatric and neonatal intensive care units, and burn units - and a well-trained experienced patient advocate can help both the medical team and the family to make decisions they are comfortable with. Here’s another real life story. A man received a frantic call from his daughter-in-law, asking for help. Her husband had met with a terrible road accident. When he arrived at the hospital, he discovered that his son had several fractured ribs, bruised lungs, and a fractured skull and to make matters worse, he had serious breathing problems that required him to be quickly put on the ventilator for respiratory support. The patient was unconscious and remained in that comatose state for four long weeks. The patient’s father, who is a friend, later confided in me that when he first laid eyes on his son, he experienced a feeling of “terror.” Tears welled in his eyes as he felt a wave of anger and impotence. As a person who always likes to remain in charge, he suddenly found himself in unfamiliar territory, frightened, clueless and helpless; trapped in a situation in which his son’s life lay in balance and all the crucial decisions related to his life were being taken by total strangers. That’s when he decided to bounce back and asked to become a part of the 42
  • 38. 7. Caring for the Seriously-ill treatment team. He decided to appoint himself as his son’s “advocate.” Fortunately, the medical team was also receptive to this idea and was happy to have him on board.They willingly shared the responsibility for decision making with him. By assuming ownership of his son’s care plan, rather than leaving everything upto the doctors, the father helped his son to make a quick and total recovery. Why do you need a patient-advocate for seriously-ill patients? In reality, you need one in every unfamiliar medical situation. Self-proclaimed experts with half-baked information can strike fear in your mind when you have a medical problem.What if your fibroids are malignant? If you have gall bladder stones which aren’t troubling you, should you allow the surgeon to completely remove the organ? Is the ECG really abnormal, or is the squiggle a normal variant? Should you agree to do the stress test because of your chest pain? Or is it just heartburn, which will get better soon? Someone has to find answers to these questions and it can be a lot better if that person is a concerned family member or a trusted friend in whose judgment you can repose complete faith. Let’s face it: there are good doctors around, but their number is dwindling alarmingly. 99 How do you cross-check your doctor’s opinion? 99 Are there simpler treatment alternatives available which he has not discussed with you? 99 Will your health insurance company pay for your full treatment cost? Or will they do their best to reject your claim on every flimsy pretext they can think of, to save themselves some money? There can be myriad worries, doubts and questions plaguing you before a complicated medical procedure. Where do you go for help and guidance? While your doctor is naturally your first choice, what happens if he is too busy, or unconcerned? Or if you cannot understand his medical jargon; or if you suspect he has a vested interest in recommending complicated surgical solutions that may not be actually required. Here’s where a patient advocate can be invaluable.Typically, there can be four kinds of events that call for the intervention of a patient advocate: 43
  • 39. Patient Advocacy Giving Voice to Patients Life-threatening situations: Sudden accidents or emergencies, where you are unable to make an intelligent, informed decision on your own. You may be unconscious, or heavily medicated. High-risk situations: Typically, a high-risk Your Advocate as your patient faces potential threat to life, limb or Spokesman organ. Such patients need very alert attendants to watch over them. A patient advocate who bats “Belief can cure and belief can kill.” for you can employ a heightened “sixth sense” A patient’s belief and confidence in that comes from experience and maturity. A high- his ability to recover must remain at risk patient’s condition can easily deteriorate, and the forefront of his care plan. Some urgent intervention can prevent a bad situation patients speak up for themselves, from getting worse. Doctors, especially big- while others think more and speak name specialists, often have to deal with so many less. Some patients are too sick and patients, that they can’t be counted upon to be tired to care, much less to speak. All fully engaged with one patient. The bigger the these patients need the protection reputation, the less likely it is that the doctor will advocates provide. be able to devote his full attention to one patient, howsoever critical her condition may be, unless she has come to her with the right references, either from a medical colleague or a “political connection.” There is no dearth of horror stories related to medical negligence in both public and private sector hospitals all over the world. This is what makes the presence of a patient advocate all the more important. You are recovering from severe physical or psychological trauma: This may not be a life-threatening situation, yet requires decision-making that has serious long-term implications, and you may not be able to think clearly for yourself at this time. Chronic medical conditions: There are many conditions, such as cancer, arthritis, and heart disease, in which even educated well-informed patients find it hard to choose the right treatment option, because there are such a bewildering variety of choices available today. An advocate mobilises scarce resources For starters, an intelligent, experienced patient advocate needs to know - How many different kind of resources is this patient going to need in order for the physician to treat her most efficiently and effectively? Does the patient need immediate blood transfusion? Financial aid? A second opinion? The patient-advocate needs to draw on her past experience with similar patients, so she can mobilise these resources well in advance, rather than having the doctors make the family members run around at the last minute. 44
  • 40. 7. Caring for the Seriously-ill An advocate needs to make an accurate assessment of the patient’s condition, to determine what sort of help would be needed over the course of hospitalisation, and to judge how fast it can be delivered. In order to be able to do this, the advocate must be familiar with the hospital’s facilities and also be knowledgeable about “prudent and customary” medical standards of care. Ask yourself, “Given this patient’s condition, what are the main resources that a physician would be likely to utilise?” The resources that we are talking about here can be: 99 Specialised pathological tests 99 Blood and blood products 99 Imported medicines 99 Consultations with other doctors 99 Sophisticated imaging studies Most of all, a patient advocate needs to empathise. She needs to ensure that a patient is not just a ‘medical case’ for the hospital staff – she is someone’s wife, mother, sister, child or a friend. Every medical decision is going to affect these people as well. There could be so many lives hanging on that one single life, so the decision she takes on the patient’s behalf has to be reached with the active involvement of all these stakeholders. 45
  • 41. 8. The Problem of Defining Death Often a patient-advocate has to transcend artificial boundaries to counsel her clients in an objective, value-free manner B ecause a doctor-patient relationship is so personal, intimate and special, it often raises a number of ethical dilemmas. One major controversial issue, a discussion of which often raises more heat than light is: how do we define death? Liberals argue that physicians and family members must respect a critically-ill patient’s personal decision to forego life-sustaining treatment (“life-sustaining treatment” implies the use of mechanical ventilation, renal dialysis, chemotherapy, antibiotics, artificial nutrition and hydration). Unfortunately, in medical practice, there is no ethical distinction between withdrawing (stopping once it has been started) and withholding (never starting) life-sustaining treatment - while in real life, there is a world of a difference between an act of commission (do we start life support?) and an act of omission (do we discontinue the life support the patient is already on?). A competent, adult patient may, in advance, formulate and provide valid consent to withholding or gradually withdrawing life-support systems, but if these advance directives are not available, then a patient advocate should be able to counsel the patient’s family in reaching the right decision that serves the best interests of the patient. Patients should also be able to appoint surrogate decision-makers who can make decisions on their behalf, in case they are not able to, in accordance with the prevailing law. Surrogate decision-makers Patients do not automatically lose the right to refuse life-sustaining treatment merely because they are medically unable to make such decisions for themselves. Authorised persons can be legally allowed to make treatment decisions for them. In every country, including India, the law recognises a hierarchy of surrogate decision-makers who can be relied upon to take crucial decisions related to a patient’s treatment, on the patient’s behalf. Physicians, in turn, have the responsibility to make a “reasonable inquiry” as to whether the patient has a legal guardian, 47
  • 42. Patient Advocacy Giving Voice to Patients or if someone else (such as a patient-advocate) has the power of attorney over end-of-life healthcare decisions. This kind of a decision-making is often vested in: 99 The patient’s legal guardian 99 The patient’s spouse 99 An adult son or daughter 99 Either parent 99 An adult brother or sister 99 An adult grandchild Physicians Please Note 99 A close friend 99 The guardian appointed by the estate If there are multiple surrogate decision-makers present, they may be asked to reach a consensus on behalf of the patient. If there is conflict among them, this will need to be resolved. Though the surrogate’s decision for the incompetent patient should almost always be honoured by the doctor, there can be four exceptions to this rule: 99 There is no available family member willing to be the patient’s surrogate decision-maker; In recognising the legitimate role of advocates, physicians should be prepared to fully discuss: ff Limitations imposed on their participation by privacy laws and other statutory and regulatory requirements and ff How other legal instruments, such as power of attorney, living wills and advance directives may affect their roles. 99 There is a dispute among family members on what decision to take 99 There is sufficient reason for the doctor to suspect that the family’s decision is clearly not what the patient would have decided if she were competent; and 99 If the doctor suspects that the decision is not in the patient’s best interests Let’s take the following illustrative case: Kartar Singh (82) is the patriarch of a large Sikh family. He suffered haemorrhagic stroke two months ago that left him paralysed and in a partially vegetative state, unable to communicate in any meaningful way. His families’, including his daughters and granddaughters began to care for him at home and have been feeding him by mouth for the entire duration of his illness. Last week however, his condition deteriorated and he is now having difficulties swallowing. 48
  • 43. 8. The Problem of Defining Death Dr Abdul Rehman, his physician for the past eight years, suspects that his patient may have had cerebral bleeding that worsened his condition. He is concerned that Singh may choke on food or aspirate, causing a chest infection, which would further complicate matters for the patient. Dr Rehman discusses the case with Singh’s daughters. They want to continue caring for their father at home including feeding him by mouth and looking after his nutrition and hydration needs, if that is at all possible. They are also convinced that their father would have expressed the same wish, had he been able to communicate.The family is extremely concerned that if he goes back into the hospital, he may not come back home alive. After careful discussion of the case with the family, during which Singh’s eldest daughter acts as his primary patient-advocate, it is agreed that for the time being the patient would continue with the care delivered at home. However, just as the doctor suspected, two weeks later, Singh has to be rushed to the hospital with a chest infection caused by aspiration of food into his lungs. He is treated with IV antibiotics and a drip is inserted to provide hydration and stabalises his condition. A CT head scan also confirms progressive cerebral bleeding. The family is struggling to come to terms with their father’s condition. They are unprepared for this eventuality, so the well-meaning doctor arranges for a third party advocate, a Sikh priest to come and speak with the family, and explain to them what might happen if they insist on taking the patient home in this critical condition. On the sixth day, Singh dies peacefully in the intensive care unit of the hospital, surrounded by his loving family members. The family feels indebted to the priest and the doctor’s team, who extended them just the kind of direction and moral support they needed in their time of need. A trusted, wise and respected member of society can often be called in to play this role at the last minute. Religious leaders, in whom the family reposes full trust, deal with such challenging situations, almost on a daily basis. However, rather than having to run around to hunt for a patient advocate at the last minute, it’s much better to appoint one well in advance, so that the family can bond and establish a relationship with her. 49
  • 44. 9. How to Deliver Bad News One of the main goals of a patient advocate is to support grieving families in accordance with their cultural values and personal preferences O ne of the most challenging tasks for patient-advocates is to deliver bad news about impending death to a family. It is never an easy task, even for the most seasoned of healthcare professionals. Dr Sudhir Bhatia, a senior internal medicine resident receives the lung biopsy results for Tushveen Khanna, an attractive 26-year-old patient, who has her whole life ahead of her and is busy shopping for her wedding planned for next month. Khanna’s test results show she has an advanced stage of lung cancer. Softening the Blow Imparting bad news is an emotional experience for the advocate as well as for the patient, so take a moment to recognise this and calm yourself. You may like to say, “You do have cancer and it is a serious illness but it’s not a death sentence, especially these days.You will need a major operation followed by some treatments that will make you feel very unwell but you can get through it.You are in good hands and you have lots of people around who care about you. If the worst does come to the worst, we can control pain without knocking you out and without loss of dignity. You have a fight on and we can win. One of the most important features is your attitude. Remember that if you have any problems or want to discuss anything we are here for you.” According to standard medical protocol, Dr Bhatia orders a PET scan and requests a consultation with a cancer specialist. An hour later, a nurse phones to inform him that the distraught patient has refused to undergo the PET scan until she sees her doctor. It suddenly strikes Dr Bhatia that no one from his team (Source: http://www.patient.co.uk/doctor/Breaking-Badhas discussed the biopsy results with the News.htm) young woman and prepared her for what lies ahead. Sometimes, doctors are so focussed on “treating” abnormal test results that they forget about the patient. 51
  • 45. Patient Advocacy Giving Voice to Patients When he finally gets to see her that evening, Dr Bhatia finds her sleeping, with a young man keeping a watchful vigil over her. Dr Bhatia gently wakes up the patient. “Hello, Ms. Khanna. I’m sorry to wake you, but I need to speak with you about your biopsy results. Unfortunately, it’s positive. I’m afraid it looks like you have lung cancer. We need to run another check on you, a PET scan, which would determine the spread of the cancer, but the nurse told me that you have refused it. Meanwhile, I’ve asked Dr Mukhesh Batra, who is a specialist in lung cancer to also come and examine you. Do you have any questions?” The girl looks at him wide-eyed and scared. Her fiancé is equally bewildered. For a brief moment, they are both silent. Then finally, he speaks up, “I thought she had pneumonia. Now all of a sudden she has cancer?” Before Dr Bhatia can respond, the poor girl bursts into tears and exclaims, “I don’t want to get any more tests done! I just want to go home!” “She is right. We just want a discharge,” says the young man. Make it a Dialogue “Breaking bad news is not as much a delivery as it is a dialogue between two people.” Their reaction catches Dr Bhatia off guard. Didn’t the news sink in? Didn’t the girl and her fiancé understand Rabow MW, McPhee SJ what he has just told them about the biopsy results? Suddenly he is unsure what to do next. He has three more patients to see before he can leave for dinner and home. He tries to calm down the young girl and persuades her to get the test done, but she adamantly digs her heels in. Dr Bhatia suddenly feels helpless and cannot understand why the patient is being so uncooperative. He tries to hide his frustration as he decides to leave to find the oncologist and get him to talk to his distraught patient. What is Empathy? No marks for guessing where things went wrong in Empathy fosters collaborative the first place. effort. It’s the ability to sense another person’s feelings as if Is it necessary to tell the patient? you were that person, while The answer is yes. retaining your objectivity. Many experts argue that empathy Fifty years ago, it was standard practice in India to is more an internal trait, a withhold the diagnosis of advanced cancer from a characteristic that depends on patient. Often the relatives themselves pleaded with qualities intrinsic to a patientthe doctor to hide the truth from the patient, because advocate’s personality rather they were worried that the patient would not be able than a communication skill. to digest the “shock.” 52
  • 46. 9. How to Deliver Bad News However, mindsets have now matured. Studies have shown that patients do want to have the correct diagnosis, even if it is bad news, because they don’t want doctors and family members to play games with them. It is important that patients are given all the medical facts, especially about their own health. They have a right to know, so that they can make informed choices about their medical, personal and legal matters. Undoubtedly, breaking bad news to critically-ill patients can be a challenging task but for the healthcare professional, it’s an occupational hazard that comes with the territory. For a young and inexperienced physician, it can be particularly stressful, especially when the patient, as in this case, is young and there are limited prospects for recovery. This is where a patient advocate can help. She can help all the stakeholders - the doctor, the patient and the family - in managing the medical crisis by providing truthful and accurate information about possible health outcomes, without deflating the patient’s hopes for recovery. Indeed, breaking bad news kindly and managing a patient’s expectations is one of the most important tasks that a patient advocate After a Loved One Dies - A Patient can discharge. The advocate has to be wise Advocate’s Tips to What You Can You like the Roman God, Janus, and be able to Do to Help Yourself see both the doctor’s perspective, as well as the patient’s, so they can both talk with ff Talk to your close family and friends, each other. especially those that you feel understand. Stick to the medical facts Patient advocates might find these tips on how to soften the blow useful…Start from what the patient understands. Begin at his level and use words that are devoid of medical jargon, so that a lay person can understand them easily. 99 Try to substitute non-technical words such as “spread” for “metastasised” and “sample of tissue” for “biopsy.” ff Don’t listen to those who say you ‘should be doing better than you are’. ff Remind yourself that it’s perfectly normal to feel sad and depressed at this difficult time in your life.. ff Find ways to continue your bond with the person who has passed on. Do the things you used to do together - for example cooking, or gardening. ff Above all, be kind to yourself. 99 Avoid careless bluntness (e.g., “You are at the terminal stage and unless you get prompt treatment, you are going to die.”). Even if this happens to be the crux of your message, it has to be cloaked in sensitive language. 53
  • 47. Patient Advocacy Giving Voice to Patients 99 Hand out information in small, digestible chunks and check periodically to ensure that the patient has understood what you are saying.You may need to repeat what you say, in order to ensure that the information sinks in, so be patient. 99 When the prognosis is poor, avoid phrases such as “There is nothing more we can do.” The truth is that there is always something which can be done to help the patient and even if we cannot cure, we can always relieve pain and suffering. Unkind, fatalistic pronouncements interfere with helping the patient achieve other important therapeutic goals, such as pain control and other symptom relief. 99 Never abandon the patient. Always let her know that you are there for her, no matter what. Responding to the patient’s emotional reactions is one of the most challenging tasks for an advocate. The patients’ reactions may swing wildly from silence to disbelief, crying, denial, shock, grief or plain anger. She may use you as a punching bag, so be prepared to act as an outlet for outbursts. An empathic response calls for four kinds of interventions: 99 Carefully observe and remain alert to any exaggerated display of an emotional reaction, such as stunned silence. 99 If the patient appears extremely miserable, use gentle probing questions to nudge them into producing a reaction, even if it entails triggering a rush of tears. Bottledup emotions can harm a patient, and they should feel comfortable in sharing their deepest fears and worries with you. 99 Identify the reason for the emotion. If you are not sure, ask the patient. 99 Finally, after you have given the patient a brief period of time to express her feelings, pledge your support and explain to her that you will stand by her side to hold her hand; and that she is not alone. Communication strategies Here are a few communication techniques that you, as an advocate, can use with critically-ill patients: 99 Warn her that difficult news is forthcoming.You can do this by stating, “I’m afraid the results reveal the situation is more serious than we would have hoped for...” 99 The patient is your first priority. However, if she wants other people present at this time (for example, her spouse), be sure to attend to them as well. 54
  • 48. 9. How to Deliver Bad News 99 Sit down and speak slowly, clearly and concisely. 99 Provide the information in small chunks; do not give a long lecture, which can be overwhelming for an anxious patient. 99 After discussing each segment, pause to allow the patient to take in what you have stated. This is known as “chunk and check.” To ensure understanding, you must ask the patient to repeat what you have said in her own words. This is called the “teach back” or “show me” method. 99 Be honest about the prognosis; do not give false hope. Be sensitive, yet direct. 99 Be empathetic (e.g., “I know this is difficult for you.”) 99 Don’t do all the talking. Allow the patient to ask questions and to vent. All said and done, bad news must be delivered after carefully assessing a patient’s level of understanding, compliance, and wishes for disclosure. Speak slowly so that the patient and her family understand. Choose your words thoughtfully and try to avoid causing any unnecessary mental anguish and anxiety. Last but not the least, a patient advocate can help to reassure the patient that her doctor will abide by three solemn commitments to her critically-ill patient: 99 That every effort will be made to treat and relieve her pain and other symptoms. 99 That her physician will not abandon her in this difficult hour and will be actively involved in the care process, every step of the way. 99 That he will support and honour any decisions that the patient or her family makes on her behalf. 55
  • 49. 10. Caring for the Bereaved As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss T alking about death is never easy. In A Grief Observed, author C.S. Lewis writes about his experience of his wife’s death, “No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning, I keep on swallowing. At other times it feels like being mildly drunk or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says...Yet I want the others to be about me.” Everyone experiences bereavement at some point in life, but when it’s sudden and unexpected, the loss can be tremendous.The news can come as a big shock, completely throw a person offbalance and overwhelm him by a rush of emotions. As a patient-advocate, you can lessen someone’s grief by bearing in mind the following principles of care: 99 Contact relatives promptly and stay with the family throughout, while liaisoning with the rest of the medical and nursing team. 99 Make available special provisions for the bereaved family, including a quiet place to mourn, and help them access spiritual support. The Grief Process Psychologist J. William Worden explains the various ‘tasks’ that need to be performed to help a person cope with the loss of a loved one: ff To accept the reality of the loss, where feelings of shock and numbness are present ff To work through the pain of grief, by tackling the feelings of guilt, anger, distress and regrets ff To adjust to an environment in which the deceased is missing, so that the reality of what has happened may sink in ff To emotionally relocate the deceased and move on with life, where a re-engagement with life is activated whilst at the same time finding a way to keep the memories close. 57
  • 50. Patient Advocacy Giving Voice to Patients 99 When bad news is delivered, it must be done gently and honestly, avoiding euphemism and long-winded medical explanations. 99 Provide both verbal and written information to the survivors: what to do next; mortuary procedures, possibility of a post-mortem examination; organ donation, if the family is interested or the deceased had expressed that wish; and details about grief counselling; and follow-up. Grief creates a whirlwind of emotions, and can be a highly traumatic and devastating experience for some, leaving them incapacitated to deal with the reality of the situation. This is when an advocate’s help is needed the most. The various stages of grief As a patient-advocate you must learn to identify the various stages of grief as you help the family cope with their loss. In her pioneering 1969 book On Death and Dying Elisabeth KüblerRoss identifies the following five stages of grief: 99 Denial 99 Anger 99 Bargaining 99 Depression 99 Acceptance The intensity and duration of each stage depends on the significance of the change or loss, and also the survivor’s personal resilience. Patientadvocates should use the following eight-step framework to help bereaved families: Major Takeaways 99 Being involved in your own healthcare could save you money time, reduce stress – and even save your life. 99 It’s a lot of work being your own patient advocate but the payoffs are worth the time spent. 99 Select an appropriate setting 99 Contact the family 99 Prepare to speak to the family 99 Tell them about the death, as gently as possible 99 Study their reactions 99 Allow them to view the body and stay close to them 58 99 Just because someone has an MD degree at the end of their name doesn’t make them immune to making mistakes.
  • 51. 10. Caring for the Bereaved 99 Co-ordinate the respectful handling of the deceased’s body 99 Assist them in follow-up actions, such as organ donation, arranging the postmortem, getting the death certificate, preparing for the cremation, and so on. Notifying death Breaking bad news is one of the most difficult and sensitive tasks that healthcare professionals have to perform, and poor communication skills can leave families confused, angry, scared and scarred. Patient-advocates must avoid elaborate euphemisms. Equally harsh in the Indian context are words such as dead or died. Use soft phrases such as “he has passed on,” “he has slipped away” and “we have lost her” and deliver those words sensitively. 59
  • 52. SECTION 3 WHEN YOU ARE YOUR OWN PATIENTADVOCATE
  • 53. 11. How I Became a Patient Advocate Prabhakar Rao A father recalls the tragedy of the untimely death of his son - and how this gave birth to JASCAP A S far back as I can remember, I’ve always volunteered to play an advocate to someone or the other. Over the years, I’ve helped a fairly large number of young people launch or advance their careers and this was done by being their advocate and mentoring them. But, first things first. Let me introduce myself first. I am a textile technologist from Bombay University and have spent over forty years in business and industry in India and abroad. I started, like everyone else does, I suppose, at the bottom of the pyramid and rose rather rapidly to senior and then chief executive positions. Many a times, youngsters who had worked with me or came in contact with me requested help in getting placements or promotions and I enjoyed playing the role of their advocate and helping them succeed. In May 1996, my only son, 30-year-old Satyajit, died of cancer in the United States where he was working as a software engineer. I was 60 then and this tragic event shattered our life and turned it topsy-turvy. I was then the chief executive of a textile company in Mumbai. While in the US and performing the last rites of my son, I came across a fairly large number of brochures, pamphlets and booklets on cancer in general and on lymphoma; the cancer that took him from us. He must have sought that literature from various cancer support organizations to help him cope with his cancer and its subsequent treatment. Browsing through that literature during that trip to the US, a germ of an idea took root in my mind. Upon our return to India, I gave up my job and my wife Neera and I decided to transcend our grief into a socially useful project to help cancer survivors in some meaningful way. We set up a charitable trust to help cancer patients in Mumbai. That marked the birth of “Jeet Association for Support to Cancer Patients” (JASCAP), a voluntary organization dedicated to cancer patients, their families and friends. 63
  • 54. Patient Advocacy Giving Voice to Patients Briefly, our objectives at JASCAP are: 99 To comfort and counsel cancer patients and their families and instill in them the confidence, courage and determination to fight this life-threatening disease, thus rendering their medical treatment more effective 99 To inform and educate cancer patients and their families about the various treatment options; and their respective physical and emotional side effects and how to cope with these 99 To help patients and their families do everything possible to cooperate fully with the medical care team and thus assist themselves towards a possible cure or to live life as comfortably as possible with this disease 99 To prepare and disseminate printed and audio-visual material dealing with cancer and its after effects to better prepare cancer patients and their families to face this disease and remove or alleviate fears, especially those based on misconceptions and incomplete understanding of the medical issues confronting them To achieve some of these objectives, we have taken the following initiatives: 99 Obtain and disseminate up-to-date and accurate information about cancer, its causes and methods of treatment, medical as well as non-medical 99 To prepare, print, publish and circulate pamphlets, booklets, slides, posters and other educational material, in English, Marathi, Hindi and other Indian languages, in order to provide patients and their families with accurate, scientific, medical and clinical information and knowledge about cancer; the different methods of treatment, control and post-treatment care plans for the patients 99 To provide guidance, help, counseling, support and comfort to patients in various forms in order to pave the way for their rehabilitation into the community 99 To enlist support of medical professionals, pharmaceutical manufacturers, social workers, voluntary organizations, government institutions, dispensaries, hospitals, medical centers; in India and abroad in fulfilling these objectives of JASCAP 99 To collect funds by way of membership fees/donations as also gifts, books, equipment and audio-visual communication/education aids for patients and those around them, as well medicines for patients in need of these supplies 99 To recruit social workers, nurses and volunteers from the medical profession, who are interested in lending their support to JASCAP and strengthen our activities with lectures, seminars and study classes. 64
  • 55. 11. How I Became a Patient Advocate 99 To build strong linkages and partnerships with institutions and other voluntary/ governmental organizations, hospitals, in India and abroad that are working for similar causes in order to further the objectives of JASCAP 99 To carry out public health activities such as supporting anti-tobacco campaigns, in order to make our society cancer-free Pledging and pooling in my limited financial resources, we founded JASCAP. Friends and wellwishers scoffed at the idea first, but seventeen years down the line, the response from canceraffected patients, the medical fraternity and the voluntary sector has been overwhelming, and this has reinstated our faith in JASCAP and the objectives that we set out to achieve. Our first big break came in 2001, when the Tata Memorial Hospital at Parel, Mumbai offered to house us in the hospital premises and despite the space crunch they faced, allowed us to set-up a small book counter where we could distribute literature on cancer. Initially, all this literature was only available in English, but gradually over the years, we have managed to have a bulk of it translated in regional languages, namely Hindi, Marathi, Gujarati, Bengali, Kannada, Tamil and Malayalam. This, we felt was important, as most patients at Tata Memorial land up from different parts of the country. Since we could not afford the fees of professional translators, we sought help from volunteers in crossing this major linguistic barrier. The cost of printing was another big challenge confronting us, besides editing the raw material, type-setting and proof-reading – but with God’s grace, help kept pouring in from unexpected quarters and we managed to remain afloat. By fighting to keep our costs low, we have been able to offer our booklets at extremely nominal prices to needy patients and their families. Since we cannot order a huge print run – because our booklets have to be routinely updated to keep pace with the new medical breakthroughs – we often struggle to keep a tight leash on our costs, without sacrificing the value we bring to our readers. We take inspiration from the millions of other Indians who are excellent in getting the biggest bang for their buck! Small wonder that until 2012, JASCAP has distributed over 200,000 booklets. We also offer video CDs and in 2011 we crossed another milestone in launching our website www.jascap.org, from where our booklets can be downloaded free-of-cost in different languages. At times, we also arrange financial assistance to poor cancer patients by putting them in touch with various funding organizations that are doing a yeoman’s job in this area. As a small unit, we are nimble and try and respond to patients’ needs promptly. We also do one-on- 65
  • 56. Patient Advocacy Giving Voice to Patients one counseling with cancer patients and their families. We have trained counselors amongst our staff and volunteers for this role. To be honest, the role is more of a LISTENER than a COUNSELLOR, but we have figured out that listening with empathy is what patients and their families require the most during this difficult hour. In rare circumstances, we also arrange peer and expert counseling for patients and their caregivers. The literature that we distribute covers information-gaps in the following areas of interest: 99 Sources of financial assistance for needy cancer patients 99 Accommodation options available in Mumbai for patients coming from different parts of the country 99 Location of free or inexpensive eateries for the accompanying caregivers 99 Assistance in paper work relating to admission into Tata Memorial Hospital 99 Navigating through the various services that Tata Memorial Hospital offers 99 Emotional support avenues Although a lot has been achieved, we at JASCAP realize that a lot remains undone as well.We would, for instance, like to set-up a patient helpline with a toll free number. The helpline staff could provide information about: 99 Other hospitals in Mumbai that treat cancer patients 99 Consultants and oncologists in private practice 99 Diagnostic centers for running pathological tests for which there is a long queue at Tata Memorial 99 Medical stores that deal exclusively in oncology drugs, provisions and prostheses 99 Individuals and organizations offering financial assistance to cancer patients 99 Affordable accommodation options 99 Blood banks and blood donors 99 Rehabilitation centers for after-care, once the treatment is over. 99 Organizations helping in gainful employment of cancer survivors 99 Hospices for terminally-ill patients 99 Dealers in medical and supportive equipment such as beds, walkers, bedpans, oxygen cylinders and so on The road is long. But, we at JASCAP are determined to soldier on. 66
  • 57. 12. How to be Your Own Advocate In order to get the best treatment for yourself, you must change from being a passive participant to becoming an active advocate for your own health M ost patients in India put their doctors on a high pedestal, thus opening themselves to abuse in case they happen to fall into the hands of incompetent or unscrupulous doctors. The only way to prevent this from happening is to either assume full responsibility for your own care, or assign it to someone whom you completely trust, such as a patient-advocate. That said, there’s a lot you can do for yourself and you don’t need to outsource advocacy to someone else every time you see your doctor. You just need to master a set of skills, so that you are empowered to act as your personal patient advocate. For starters, here are some resources that you might find useful: Book Resources Hundreds of Life-Saving Facts, Action Steps and Strategies You Need to Know by Dr. Julia A. Hallisy offers sensible advice on how to lower your risk of being the victim of a medical mistake, get a second opinion, and safeguard against Did You Know? hospital-borne infections. Health Power 101: The Complete Guide to Patient Empowerment by Jeffrey Brown will teach you about common health problems, medical tests, and the importance of the early detection of chronic diseases. ff If patients are not involved in their own healthcare, they are increasing their risk of : Online Resources ff being overcharged by billing staff; Every Patient’s Advocate: (www. trishatorrey. com) provides information on how to receive better care ff wasting money on duplicate tests? ff being harmed by potentially life threatening oversights by the medical staff; ff being short changed and underpaid by insurance companies; and 67
  • 58. Patient Advocacy Giving Voice to Patients The Empowered Patient: (www. theempoweredpatient.com) gives tips on how to effectively communicate with medical staff-members. Let’s take the case of Prashant S Dhananka, the Infosys employee who spiritedly argued his case from a wheelchair after his botched up chest surgery 19 years ago that left him paralysed from the waist down.The compensation awarded to him by the Supreme Court was less than the Rs 7 crore he sought, but the highest paid in India to date - Rs 1 crore. During his trial the software engineer gave vivid details of the gross negligence he suffered at Should I Become an Expert Patient or Nizam’s Institute of Medical Sciences Hire an Expert Patient Advocate? (NIMS), Hyderabad. You may like to go through the details of this case (www. Dave deBronkart’s story makes for interesting reading. He was diagnosed with kidney cancer indiankanoon.org/doc/57638/) in order and was given less than six months to live. to understand how and why sometimes “I found myself tumbling down a rabbit hole things can go so grossly wrong between toward my death,” he told National Post. Later a patient and a doctor. deBronkart’s doctor referred him to a patient forum on the Internet, where members told The ABC of doctor-patient talk him about a new treatment — high-dosage The first skill you need to learn is how to interleukin — that many hospitals do not talk to your doctor, so that he listens to provide, but that in a minority of cases can what you have to say. Experts recommend treat his type of malignancy. the ‘ABC’ model for patients if you need to be your own advocate, where: He hunted down a specialist who treated him A stands for Asking the right questions of the doctors who are treating you; B is for Being prepared, so you are armed with knowledge about the disease afflicting you; and C is voicing your Concerns to the doctor, so he can address them. In order to save your time, and your doctor’s,the PatientAdvocate Foundation (PAF) in the US encourages patients to go to a doctor with a prepared list of questions such as: with this, and the treatment worked wonders. Mr. deBronkart realised that the established system of propagating research — in which studies are submitted to a journal, reviewed by peers and finally published in a process that can take a year or more — could not keep up with a deluge of scientific developments in medicine. “What I found from the patient community was better, more up to date and medically more sophisticated than the information that most oncologists have,” Mr. deBronkart said. (Source: http://news.nationalpost.com/2011/05/14/the-expertpatient-who-knows-best-the-doctor-or-the-patient/) 68
  • 59. 12. How to be Your Own Advocate 99 What is the goal of my treatment? 99 What are my treatment options? 99 What is your experience with the treatment of this disease? 99 How will I receive this treatment? 99 What will it cost me? At times, if the doctor, for whatever reasons, is not very forthcoming with the information that you seek, it helps to be a little assertive. It’s important to trust your doctor - but you need to verify his information is reliable. You can validate it by checking with other medical experts, and seeking out patient support groups and expert patients. Share your health history. It’s important to be honest with your doctor. Inform her about all the treatment protocols that you are following, including alternative treatment plans. Have you checked out www.healthvault.com? Open a secure personal account on the site to organise your medical records, imaging films, test results, doctor’s appointments, and even your children’s immunisation records. You can save and store your medical history, your past and current medications, allergies, family history, and daily blood pressure and blood sugar readings. If You Don’t Tell The Doc­tor That You Are In Pain, Who Will? ff Never act brave. ff Never try to minimize the pain or symptoms you are experiencing. ff Don’t for get to report the bad parts of your day or the inconvenience your illness is causing you. When in doubt, seek a second (or third) opinion. Also, don’t hesitate to negotiate your final medical bill. If you are financially strapped, many doctors offer a discount on their consultation fee. In everything that you do, remember that you do not need to be aggressive. There is a world of a difference between being assertive and being aggressive. While the first approach will get you quick results, the second will only serve to antagonise your doctor. You will find valuable information on improving doctor-patient communication from my blog entries listed below: Dr.Malpani’s Blog: How to talk so your doctor will listen (blog.drmalpani.com/2012/09/how-to-talkso-your-doctor-will-listen.html) 69
  • 60. Patient Advocacy Giving Voice to Patients Where I talk about cultivating a source inside the doctor’s clinic, seeking other references, and the importance of taking a friend along to your appointment with the doctor. Dr.Malpani’s Blog: How to talk so your doctor honest (blog.drmalpani.com/2012/11/how-to-keepyour-doctor-honest.html) Ask for video documentation of any surgical intervention and if your doctor is reluctant to share this information, this is a red flag which should cause concern. Dr.Malpani’s Blog: Why patients need to SPEAK UP! (blog.drmalpani.com/2012/08/why-patientsneed-to-speak-up.html) The more the questions you ask about your treatment, the more careful your doctor will be about how he treats you. Talking builds trust and leads to better results, quality, safety, and satisfaction. Dr.Malpani’s Blog: How to talk to your doctor SAFELY (blog.drmalpani.com/2005/10/how-to-talk-toyour-doctor-safely.html): SAFE is an easy to remember acronym, which will help you communicate your fears and expectations to your doctor, so he can address them. Here S stands for your story, A for assessments, F for fears and E for expectations. 70
  • 61. 13. Researching and Becoming an Expert You must be actively involved in making decisions about your own body. If you don’t understand the medical gobbledygook, the fault is not yours -it’s the doctor’s E ven the most complicated concept in medical science can be simplified enough for a layman to understand it. It is your doctor’s responsibility to explain your health problem and your treatment choices to you in simple terms. This will help you to make an informed decision about your treatment and this is important for obtaining patient-centered healthcare. A good doctor must respect your intelligence, your desire to learn about your medical condition and your ability to understand what procedures he intends to carry out on you, so that you both can work together as a team in order to find the best therapy available for you. If your doctor doesn’t have the time or inclination to do so, or if your communication with your doctor is like a one-way street, then this is a red flag that you need to find a new doctor who is willing to actively engage you in your medical care. If this is not possible, consider hiring a patient-advocate who will help you make sense of your illness. What Information should Your Medical Records Contain? ff Unique identifiers such as your full name, ID proof etc. ff Demographic data including your address, phone number(s), and email address. ff Known medical conditions, allergies, drug/alcohol/smoking habits ff Your doctor’s records of your visits, diagnoses, treatments, diagnostic test results, prescriptions, and referrals to other doctors. ff The health of your immediate family members, particularly parents and siblings, and whether there is a history of certain diseases. ff Billing and payment information, such as the party responsible for payment, health insurer, and primary beneficiary. 71
  • 62. Patient Advocacy Giving Voice to Patients Medical science rarely has straight forward solutions, and what works for one person may not work for another. Every person is different, and everyone has different preferences. There are very few cut-and-dried protocols in medicine which can be universally applied to everyone. This means treatment of many diseases demands a patient-tailored protocol, depending upon your individual circumstances and wishes. Good doctors encourage your participation in your healthcare, so that you can make an informed decision about what is right for you, according to your personal circumstances, beliefs and priorities. For this to happen, you should also strive to gain knowledge about your health problem. Being passive and dependent upon your health care provider for all your treatment decisions will not help you get the best medical care. You must do your own homework to find out what your options are, so that you can make a well-informed decision, and select a treatment protocol that you are comfortable with; which will improve your quality of life and maximise your chances of a good outcome. The best-place to look for information is the internet, but not every site is trustworthy. It’s a good place to start, although not a very good place to end your search for the right information. It is important to double-check the online information with your patient advocate, and consult reliable government health web-sites because these are regularly updated with current information.The US and the UK governments have been leaders in the field, and their sites (www.medlineplus.gov/ and www.nhsdirect.nhs.uk/) are very useful - please bookmark them. The Indian government has sadly been a laggard in this field, but if you are looking for India specific information, try the Ministry of Health and Family Welfare (www.mohfw.nic.in/), The Department of Health Research (www.dhr.gov.in/), and The Indian Council of Medical Research (www.icmr.nic.in/). When you are in hospital, here is what you need to know about your medical records: Make sure you have copies of all your medical records- they are legally your property. You can give the doctor photocopies of your original reports for his files but keep the originals with you. They are worth their weight in gold. Also make sure that you understand what’s in your medical records- you must be able to make sense of your doctor’s hieroglyphics,, so you can explain your diagnosis and treatment to another doctor, if you need to take a second opinion. Read up on your condition: Read as much as you can about your problem. A good doctor will arm you with printed material to read at home. Read up on the doctor: You have the right to know the name of the doctor(s) treating you, their professional qualification, their special interests and their respective track records. If this information is inaccessible or not shared on the hospital website, you may need to dig deeper. 72
  • 63. 13. Researching and Becoming an Expert If you think you are not receiving the information or the level of care that you are entitled to, you can demand a transfer to another facility. Additionally, you have the right to be informed of the possible financial implications of a proposed treatment plan at the time of admission. If there is a change in the medical condition or treatment protocol, and your costs are likely to rise, you should be told about this in advance and not be presented with an inflated bill later. You can accept or refuse any part of your treatment, after being informed of its risks, benefits and likely consequences. Remember that you are always free to seek discharge against medical advice, if your dissatisfaction with the doctor or the hospital is extreme.You may be asked to sign a ’Discharge against Medical Advice (AMA)’ form, but you can’t be forced to stay in the hospital against your wishes - and if the hospital tries to do this (for example, by insisting that you have to clear all your hospital bills before they will let you leave), they are committing a criminal offense). 73
  • 64. SECTION 4 THE ROLE OF PATIENTADVOCATES IN HOSPITALS
  • 65. 14. How Advocates Can Build Trust between Patients, Doctors and Hospitals Patient-advocates employed by hospitals need to be trained in giving the patient what he is looking for T imes are changing, and hospitals, doctors and patients are changing too. As patients have become more savvy and demanding, there is a need for patient-advocates to fill in the service gaps that hospitals and doctors leave. While they may be great at performing complex surgical procedures, doctors are often not very good at providing tender loving care - and patients want to be hand-held when they are ill. This is something that patient-advocates can do efficiently. A Patient Has the Right to Select Her Advocate Sunita lives in an old-age home in Gurgaon, Delhi. Of late, her worsening vision and unsteady walk have meant that she spends more of her time indoors. Her daughter Kamla visits her a few times, every week. Kamla also takes her mother out for doctors’ appointments. During her first appointment, Sunita told her doctor, “Please communicate with my daughter on all health-related matters. My daughter makes all those decisions and I like it that way. She explains things in a way I can understand and, after all, she’s the one who takes me around to all of my tests and appointments. Today, when hospitals advertise, they no longer flaunt their fancy buildings. Instead, they have photos of their diva brand name star surgeons, dressed in crisp white coats and stethoscopes, the idea being to entice patients with their pool of top medical experts. After all, healthcare is a service and hospitals want to position themselves as caring, credible service providers. Patients want to ensure that they get the best medical advice from the top expert in the field, in a safe, professionally-run hospital environment. As patients are becoming more aware, they are asserting their rights, and have begun to expect doctors and hospitals to take an interest in their well-being - and are willing to pay to get top-notch services. 77
  • 66. Patient Advocacy Giving Voice to Patients The onus is now on doctors and their medical teams to ensure that they provide premium quality service, so they can build a relationship of trust with their patients. Doctors need to accept that patients are consumers who can get turned off by hospitals that offer poor-quality service - and go to the competing five-star hospital down the road. Typically, hospitals are unfriendly places, which are designed for doctors and nurses - not for patients. Often the left hand does not know what the right hand is doing; there is little coordination; and patients are lost and confused. However, for patients to have a positive experience in the hospital, it’s important that they feel heard, understood and respected. One simple way patient advocates can do this is by collating all medical updates and providing a summary daily report card on their state of health. A tech-savvy patient advocate can set-up an online patient portal, where family members can track the progress of the patient. Using Skype, the patient (or the advocate or the relatives in the hospital) can hold video conferences with friends and family members, wherever they may be located. If you are not so ambitious, you can setup a simple Facebook page for the duration of your patient’s hospital stay, and this can serve as a very valuable online channel which friends and relatives can use to stay in touch; remain updated; and provide support, even if remotely. All you need to utilise this kind of a service is a laptop. This can be especially useful for critically-ill patients and their families. By providing such innovative, value-added features, you can establish yourself as a credible, state-of-the-art healthcare brand. Why hospitals are employing patient advocates An effective patient-physician relationship creates: ff Mutual understanding between patient and physician, so both know what to expect from each other. ff A powerful resource for healing and comforting ff A learning resource for both parties ff A framework for maintaining open discussion, even when there is uncertainty about the medical outcome. Given the great value which patient advocates can add, forward thinking hospital CEOs are now investing in creating a team of patient advocates Good doctors act as advocates for that patients can turn to in their time of need. their patients all the time – and are Patient advocates report directly to the CEO happy to treat patient advocates as and act as ombudsmen. Smart CEOs understand partners. the value of improving the patient experience and know that patient advocates can play an important role in both monitoring this and in improving it. From that prominent and protected 78
  • 67. 14. How Advocates Can Build Trust between Patients, Doctors and Hospitals vantage point, patient advocates spearhead efforts to improve care by scrutinizing untoward patient experiences and advocating timely remedies. Patient advocates are well-connected within the hospital, and are uniquely qualified to inform patients and their families of other services available to them while they are hospitalized, whether in terms of accessing additional health information at an onsite consumer health library, the availability of spiritual support services, or requesting a massage on your behalf. Patient advocates are very effective brand ambassadors, which show that the hospital is a caring service provider who puts patients first. Some hospitals assign a patient advocate to each patient at the time of admission. This can be very comforting for a patient who now has a trusted guide he can turn to in times of need. Patient advocates employed by hospitals need to be trained in giving the patient what he is looking for. It could be information, excellent service, compassionate staff, or technical expertise. Let your patient-advocate forge partnerships that you can leverage as a service provider. Even though their salary is being paid by the hospital, their primary job is to delight patients. Good patient advocates share hospital resources with patients freely and in a meaningful way. They must understand that their role is to give patients time and a listening ear. They go the extra mile in reaching out to patients, especially during an emergency. A patient advocate can generate a lot of goodwill for the hospital by delighting patients ! The biggest worry an enlightened hospital CEO has is how to manage unhappy patients. Many patients may experience difficulties during their hospital stay, but are scared to articulate these. They have concerns that are never communicated because they are fearful of repercussions if they complain.They are afraid that the staff will label them as a complainer and treat them badly. Hospitalization and illness can be very stressful for the patient and it’s common to experience emotions that may make it difficult for patients to express their needs and concerns.They are scared that they might break down and cry; lose their temper with a hospital staff member; feel intimidated and not say what they intended to; or be labeled as difficult, which is why they are scared to speak up. They end up bottling their complaints, but this resentment can build up, and can be expressed as violence against the hospital staff, in case the patient suffers from a complication, or dies. Patients need someone other than the hospital staff to speak for them, which is where the patient advocate comes in. Bringing up concerns to the patient advocate is not viewed as being complaining or making waves – it is viewed as an opportunity to provide you with support, encouragement, and assistance. 79
  • 68. Patient Advocacy Giving Voice to Patients Patient advocates are on call 24/7 - and their goal is to provide you and your family with the best possible experience during the hospital stay. A patient advocate is in hospital to help you – she is on your side and her job is to make sure you are happy, so make the most of her services. 80
  • 69. 15. Family Physicians as Patient Advocates Dr Jaya Bajaj Advocacy is an important component of the doctor-patient relationship. Family physicians may be a natural choice as patient advocates because of the trust they have built over a long time I grew up in a small town and had the privilege of experiencing the kindness of our family doctor. My siblings and I received all our vaccinations at his clinic and he would graciously make home-calls when one of my grandparents got sick. I remember him sitting next to me, reassuring that “everything will be alright” when I got sick during my HSC board exams. When my grandfather developed heart disease, he helped my father arrange medical care for him in the nearest town. He was always available for answering our questions during the long hospitalization of my grandfather. He even travelled to the hospital when my grandfather was getting discharged and discussed the prognosis, discharge instructions; medications etc. with the consulting cardiologist that he then proceeded to explain to my father in simple terms. Any surprise that he took care of three generations in our family? These are the kinds of family physicians we had until a few decades ago. “patient advocacy” and “patient-centred care” were not the terms I remember being spoken then, but the family physician always put the patient’s interests first. However the last few decades have brought significant changes in medical care. The introduction of powerful medications, sophisticated imaging procedures, and expensive diagnostic techniques has meant that healthcare delivery has become a very complex process. Patients don’t always consult family physicians first and many want a specialist consultation even for minor ailments. The fragmentation in healthcare has actually led to a drop in the quality of care and there is an increasing need for patient advocates to protect the patient’s best interests and ensure the delivery of safe care. This chapter looks at the role of family physicians as patient advocates. 81
  • 70. Patient Advocacy Giving Voice to Patients My favourite description of family physicians is by Dr. Gayle Stephens, “Family physicians know their patients, know their patients’ families, know their practices, and know themselves.” Stephens describes patient management as “the quintessential skill of clinical practice” and “the area of knowledge unique to family physicians.” He distinguishes management from treatment, saying managing implies, “alleviating most effectively the total impact of illness upon that person.” Family physicians are usually the first point of contact during an illness. Unlike other medical specialists, who focus on specific diseases or organ systems, family physicians specialize in seeing patients who may present with multiple problems that are not slotted into a particular system. Ideally, family doctors have a long-standing relationship with their patients and therefore have a sound basis of understanding the patient’s perspectives and needs, so they can offer options that meet their best interests.They have a holistic perspective, because they are taught to put the patient first. Globally, healthcare systems that are considered to provide the best quality care are the ones with strong primary care, driven by family physicians. When should family doctors act as patient advocates? Always! Recently, one of my elderly relatives had to be hospitalized. In his mid 50s, he had been in good health except for mild hypertension (high blood pressure) that was well controlled with medicine. He had several episodes of diarrhoea overnight which he attributed to dining outside. He had his morning tea and breakfast and took his medication as he always does. Yet feeling sick, he decided to take the day off, something he rarely did in the last couple of decades, and never for health reasons. This surprised his spouse as well as concerned her.A couple of hours later she noticed that he looked pale and was unable to stay awake. She rushed him to a nearby hospital, where he was diagnosed with acute renal (kidney) failure, atrial fibrillation (irregular heartbeat), hypotension (low blood pressure as a result of diarrhoea), cellulitis (soft tissue infection) in the leg and electrolyte abnormalities (low sodium) leading to confusion. He was given intravenous fluids and was examined by an internist and a surgeon, who recommended that he be moved to a tertiary care centre because of the complexity of his illness. He was immediately shifted to a tertiary care centre in a metropolitan city. Needless to say, the family was in a state of shock over the developments of the past 24 hours. At the tertiary care centre, my relative was examined by an army of healthcare professionals: internist, surgeon, and cardiologist, nutritionist, physiotherapist, wound care specialists etc. His blood pressure medicine was stopped and he had to be started on a new set of medicines, 82
  • 71. 15. Family Physicians as Patient Advocates mainly antibiotics, medicine to regulate his heart rate, blood thinner, antacids, multivitamins etc. Over the next two days, when his infection subsided, he was no longer confused, yet he complained of a persistent headache. After multiple requests, the nurse came around to check his BP which was quite high as the medical team had forgotten to restart his BP medicine. He was discharged home with half a dozen medicines and instructions to follow-up with three doctors who had seen him during his hospitalization. In retrospect, he could have been spared this ordeal, had his family physician been a part of the medical team. He would have added value by: Eliminating the medical jargon Healthcare has a language of its own. Many times healthcare professionals don’t realize how insidiously medical acronyms become a part of their normal lingo. A family doctor who is aware of his patient’s health literacy can explain the diagnoses in a language that the patient can understand, and prepare the patient for the next course of action. An important part of this role is helping to curate and interpret the almost overwhelming amount of information available to patients today, thus helping them make intelligent personal choices for their own care. Strengthening the diagnostic process Healthcare has become more complex and fragmented than ever. A family physician can facilitate diagnoses in a timely manner by prioritizing problems. He can educate patients about the best evidence-based treatments available, helping them to make informed decisions about their care. For instance, in the case cited above, the family physician could have picked up the warning signs of low blood pressure and helped coordinate the future course of action. Communicating the diagnosis to the family If the patient so desires, the family doctor can explain to the patient’s family or care-givers details about the disease and the available treatment options. He can help patient select the best treatment options available by exploring the resources and constraints of the patient and the care-givers. Offering resources to the patient and family A serious medical illness can be terrifying and disruptive to the patient, as well as the patient’s family and care-givers.A family doctor can help patient and family members tap into community resources.These could be local support groups, expert patients, health libraries, reliable online 83
  • 72. Patient Advocacy Giving Voice to Patients information on patient’s illness, and information on financial grants, as well as information on centers offering such resources. Researching and choosing appropriate a healthcare team Family doctors can help patients find the best possible healthcare team for their needs, by keeping in mind the patient’s personal preferences and beliefs. Exploring alternate treatment options with patients Patients are often the first ones to discover “new treatment options” they want to explore. Sometimes, patients are not able to discuss these with the specialist, simply because of a lack of access to the specialist, many of whom are unapproachable and inaccessible.A family doctor can help the patient sift through relevant information and coach the patient on effective ways of sharing the information with the specialist. In the case of my relative, the patient was offered warfarin as a blood thinner for his heart condition. What the specialist was not aware of was that the patient, who lived in a small village, would not be able to get the basic monthly lab tests that are important for monitoring patients on warfarin. A family physician who had this contextual information on the patient, would have brought this to the specialist’s attention, and suggested an alternate course of action. Ensuring continuity of care An engaged patient-doctor team is needed to ensure continuity of care. A huge proportion of medical errors can be attributed to communication breakdowns because of healthcare silos.A family doctor can function as a team leader, coordinating care between patient, family members, care-givers and multidisciplinary healthcare providers, thus ensuring clear communication and continuity of care. This is very important to providing patient-centered care. Sadly, most medical students are never exposed to these concepts during their medical education. 84
  • 73. 16. The Patient Advocate as Patient Guardian Donald W. Kemper and David Foster Patient advocates act as guardian angels when you are in hospital T oo many modern hospitals have become intolerably complex. It is not uncommon for 30 or more health professionals to provide care to the same patient over a threeday hospital stay. Often three or more clinicians will be in the patient’s room at the same time but for different reasons (and there may be even more, for example, when there are shift changes; older patients, who may have multiple medical problems, will often need many different specialists; and in hospitals attached to medical schools, who have to teach professionals in training). Even with the best technology available to coordinate care, complexity is a breeding ground for medical errors, miscommunications and contradictory orders. Within this complex maze of care, only three elements of the mix are reliably constant: the patient, the medical record and, if the patient is lucky, the guardian. Because the patient is often medicated and the medical record is always mute and often disjointed, the only clear and steady voice of continuity in the patient’s room is that of the patient guardian. Patients often feel helpless There are three main reasons why hospital patients feel lost and helpless: 99 Hospital patients are generally sick, injured, under stress or maybe recovering from surgery. They are not at their best, mentally or physically. Fatigue and confusion commonly cause patients to feel lost and helpless. 99 There is a learned helplessness about being a patient. A patient is expected to be passive. The doctor gives the “orders.” The medical jargon is unfamiliar. The building layout is often confusing. And the patient is expected to ask permission before doing anything. 85
  • 74. Patient Advocacy Giving Voice to Patients 99 The medications that patients are given often cause drowsiness, confusion and disorientation. Whether the drug effect is mild or severe, patients under medication are not able to think as clearly as they normally would. The “Telephone Game” Have you ever played the game “Telephone”? One person begins by whispering a long sentence to the person next to him—just once with no repeats. Then that person whispers what she thought she heard to the next person, and so on, until everyone has heard and repeated the message.Then the final message is compared to the original message. Most of the time, there’s a hilarious disconnect between the beginning and the end. Much the same can happen in a hospital, but without the fun and games. A friend of ours got caught up in a round of repeated misinformation during her hospital stay. She was scheduled for hip replacement surgery. At the pre-op appointment, she was asked if she had any drug allergies. She responded that she didn’t have any allergies but she was sensitive to opioids. She said she could take them, and they worked well, if an anti-nausea drug was also given. The pre-op nurse made a note in the chart. During the prep period right before surgery, the prep nurse said, “It says in your chart you’re allergic to opioids.” Our friend said, “No, they work well for me if I also get an anti-nausea drug with them.” In the hospital room after the surgery, the attending nurse said,“Since you’re allergic to opioids, we’re giving you Tylenol.” The patient said, “No, I’m not allergic. Opioids really help control pain for me. I just need to take them with an anti-nausea medication because they make me nauseous.” The patient’s spouse heard this exchange three different times while he sat with his wife in her room. But the message just didn’t get through—the circuit of misinformation kept getting repeated. It wasn’t until 4:00 in the morning after the surgery, when the patient was exhausted and crying for pain relief, that she finally was given dilaudid, an opioid pain medication, and her requested anti-emetic.This episode played out the telephone game in which the wrong information kept getting repeated despite the patient’s attempts to correct it. If the spouse had been included in the patient guardian role, he would have been able to save his wife the painful experience. Good doctors aren’t enough: Everyone hopes his or her doctor will be above average.We want our doctor to be technically competent, be a diagnostic genius and have a caring bedside manner. Even if that were true for every doctor, it would not be enough. In the hospital setting, your doctor is often not nearby. Your doctor cannot be the constant, caring guardian angel 86
  • 75. 16. The Patient Advocate as Patient Guardian you need to protect you from error. There are too many others providing care whom your doctor may not even meet. Good doctors are important, and if yours is better than average, count yourself lucky. But even with the best of doctors, once he or she is out of the room, you can still be given the wrong medication; be asked to walk when you shouldn’t; or be given an infection by someone who did not wash his hands. Many medical errors are less about how good your doctor is and more about how good the system is in coordinating your care among the many professionals who are there to help you. Medical mistakes do happen Primum non nocere is Latin for “first, do no harm.” The principle is taught in every medical school. Its prominence in medical education foretells the reality that mistakes will happen unless you are extremely careful to prevent them. In the U.S., one-third of hospital patients are subject to medical errors, resulting in about seven percent who experience permanent harm or death, as per one news report. Mistakes will happen—but they don’t have to happen to you The job of the patient guardian is to help the care team to prevent mistakes or to correct them before they harm the patient. Mistakes are preventable, and many can be prevented by the actions of the patient guardian. There are four main duties of a patient guardian: infection control, medication monitoring, watching for changed symptoms and shared decision making. Each duty is targeted at preventing a different type of medical mistake. Infection control involves the guardian’s insistence on the staff washing their hands every time; ensuring the administration of peri-operative antibiotics before, during and after surgery; following appropriate wound care rules; and keeping visitors with coughs, colds and fever far away. Medication monitoring involves paying attention to what the pills look like and when they are given, plus asking questions if anything changes. Watching for complications or changes in the patient’s condition and pointing out any changes to the right staff member can be life-saving. Shared decision making involves always asking if there are options – and very importantly, if there is the choice to do nothing. Often, watchful waiting and attentive inactivity are sensible choices. The guardian needs to ask - what would happen if the patient delayed or avoided a 87
  • 76. Patient Advocacy Giving Voice to Patients recommended treatment or test. Many treatment decisions are “preference-sensitive,” so the right decision depends on the patient’s preference. The guardian can help to make that preference heard. Preparing to be a patient guardian There are a few things a patient guardian can do before or at the start of a hospital stay: 99 Interview the patient about his or her wishes, and ask for copies of the patient’s advance directives for use if needed. 99 Get written permission from the patient to see his or her medical records. In the U.S., this may require a privacy release document. 99 Record the patient’s baseline blood pressure, pulse and other vital signs for comparison later. 99 Ask the main doctor what complications to look for, and record phone numbers for whom to call if these symptoms appear. 99 Keep copies of key parts of the medical record with you. This is critical when the patient is transferred from one facility to another. Sometimes the patient or guardian’s copy or download of records to a smart phone can be very useful to the doctors at the new facility because the more formal transfer of information can consume precious time. 99 Ask to see the quality measures for the type of care the patient is expecting to receive. The National Quality Forum website allows you to search quality measures for specific treatments. (www.qualityforum.org/Qps/) 99 Remember the guardian’s role is primarily a medical one – to ensure the patient gets the best medical care. Of course a guardian can be a friend and supporter too. But performing the role of a guardian when the situation calls for it – and being willing to be assertive when needed, is the one function that will make the biggest difference. Getting Help from the Clinical Record Patient guardians, with the patient’s permission, are increasingly gaining access to the patient’s chart and medical records. This is an important tool to have. Many providers offer patient-facing applications or website access to medical records through standards such as the Blue Button. (www.bluebuttondata.org/) 88
  • 77. 16. The Patient Advocate as Patient Guardian Laxmi is a cancer patient at a hospital clinic that allows patients (and other authorized individuals) to download medical records onto a smart phone. Her husband did just that.When Laxmi had a stroke and was transported to a different hospital, the emergency physicians there were not able to access Laxmi’s medical records at the first hospital. After repeated attempts to get the records, Laxmi’s husband simply pulled them up on his smart phone and showed them to the emergency room doctors, who used the lab results from the first hospital to determine the right course of treatment. Be loud enough to save a life No one enjoys being a pest. We particularly don’t want our doctors to think we are rude, ungrateful or “problem” patients. On the other hand, holding back when you know things are not right can prevent you from saving the life of someone you love. Lewis Blackman was a previously healthy, highly promising 15-year-old boy who was three days past what was supposed to be a routine surgery to prevent future problems. His pain had been controllable after the surgery, but on the morning of the third day it rose to “a 5 on a scale of 5”—and then it got worse. He was on a pediatric cancer unit because the surgery unit was full. It was the weekend, and the surgeons had turned his care over to residents. In the afternoon he was even worse. The nurse wrote in the chart, “Gas pains—patient needs to move around.” In spite of Lewis’s protests, Helen, his mother, and the nurse helped him walk around the ward. He seemed weaker and weaker to Helen.The nurse thought Lewis was just feeling sorry for himself. Helen asked for an experienced doctor to come and see Lewis. Instead, they sent the chief resident, but they didn’t tell her he was still in training. She relaxed because he seemed confident and she thought he was a veteran. He was not. Lewis’s pain was unbearable. He was sweating and his temperature had dropped. On the morning of the fourth day, the nurses could not measure his blood pressure. They thought the equipment must be broken. Lewis’s speech became slurred. He said, very slowly but quite audibly, “It’s going black.” Only then did the chief resident call for a full “code alert,” and veteran doctors arrived. But it was too late. Lewis was pronounced dead at 1:23 p.m. that afternoon. An autopsy determined that Lewis’s abdomen held nearly 3 liters of blood caused by the hole that his pain medicine had eaten in his upper intestine. Lewis had slowly bled to death, and no one but Helen had paid attention to the signs. 89
  • 78. Patient Advocacy Giving Voice to Patients The full story is here: www.lewisblackman.net/ Our medical system should never allow this to happen again. And yet, we know that it will. If you are a patient guardian, there is no action you might take that is too rude or too insistent if it results in possibly saving the life of your child or your loved one. Many hospitals are implementing a family-activated “code” to provide an extra layer of patient safety. If a patient guardian sees that a patient’s health is changing for the worse and the clinical team is not responding, the guardian can call a “code” by dialing a phone number, and a response team will be activated to address the issue. (Code HELP at www.harrisonmedical.org/ file_viewer.php?id=6115) Hospitals are not as safe as we wish they were—not nearly as safe. No one believes that a patient should need a patient guardian. But unfortunately, they do. No matter who you are and where you are, having a patient guardian to help protect you in the hospital is a good idea. Hospitals, even the famous ones, are so very complex that as soon as they work to eliminate errors in one area, new problems spring up in another. Of the three constants in the room (the patient, the record and the guardian), the patient guardian is quite often in the best position to prevent errors or to spot them early on. 90
  • 79. 17. Patient Advocates in Biomedical Research Manju Padmasekar In 1987, a group of angry HIV positive patients came together to set-up ACT UP, an outfit with the mandate for fighting for the basic human rights of AIDS patients.This marked the start of a long and lonely battle C linical research allows doctors and scientists to test and develop new medical diagnostic tools and treatments, so they can discover better ways of treating deadly diseases. Advocacy is required as much in clinical research as it’s required in primary care, because the subjects of research are the patients themselves.While biomedical research used to be the monopoly of scientists and clinicians, patient advocates started overseeing clinical trials in order to guard the rights of patients. The need arose when it was discovered that patients who participate in clinical trials are often in danger of being exploited by unscrupulous researchers who may be so focussed on their research objective and advancing their own careers, that they may forget that their true goal is to reduce the suffering of the patients. There are scores of real life horror stories of clinical trials gone awry, where medical ethics were violated and trial participants harmed knowingly with impunity. In these cases, patient advocates have played a key role in protecting patient rights during clinical trials by: 99 Educating patients about a clinical trial’s potential benefits and harm 99 Making sure that the information provided to the patient is reliable 99 Confirming subjects have provided informed consent 99 Promoting patient safety and confidentiality 99 Identifying and addressing potential ethical issues in the trial 91
  • 80. Patient Advocacy Giving Voice to Patients Once their interest and involvement in this discipline rose, patient advocates began to realise that they needed to take a much more active role in biomedical research. Their focus is now on making the research agenda more patient-friendly. This they do by sharing the patient’s perspectives with researchers and increasing their clout by: 99 Lobbying with the legislature to increase funding for research on specific diseases 99 Acting as a connecting bridge between scientists and society, thus helping researchers keep patients’ needs in mind, rather than furthering their narrow professional agendas 99 Helping to design clinical trials which were meaningful and practical 99 Expanding opportunities for patients to participate in clinical trials 99 Working with media channels to raise awareness about a particular disease Philadelphia This 1993 American film, draws heavily from the real life workplace discrimination faced by attorneys Geoffrey Bowers and Clarence B. Cain, who got dismissed by their law firms once their HIV-status came to be known at office. Philadelphia was one of the first mainstream Hollywood films to acknowledge HIV/AIDS, homosexuality, and homophobia. This is an inspiring film, and demonstrates what impact the media can have in influencing public perception of a disease, by giving patients a public platform to articulate their views. An excellent example of how empowered patient advocates can influence the biomedical research community and policy makers to catalyse change is the HIV/ AIDS advocacy group - AIDS Coalition to Unleash Power (ACT UP). This is an international direct action advocacy group, whose motto is Silence = Death. This is what advocacy is about - give voice to the disempowered. When AIDS was discovered nearly four decades ago, a diagnosis of AIDS was like pronouncing a death sentence on the patient. AIDS became the leading cause of death in US men aged 25 to 44, and there was a lot of stigma attached to the disease. That’s when a group of HIVpositive patients joined forces and established ACT UP in 1987. This was a group of angry patients who were determined to stand up and fight for their rights. They realised that anger alone cannot bring about a mindset change.They dedicated themselves to their mission of advocating for AIDS patients, and put in a lot of hard work to acquire knowledge by attending scientific meetings.They learned about drug design; biomedical research; clinical trials, the commercial interests of pharmaceutical companies, and how the Food and Drug Administration (FDA) of America and the National Institute of Health (NIH) function. Armed with this information, these patient advocates then sat down with policy makers, 92
  • 81. 17. Patient Advocates in Biomedical Research scientists and regulators and pushed for wide-scale changes by demanding transparency and accountability in the functioning of all these government and non-government agencies. Their hard work gradually began to pay off and they were able to: 99 Accelerate the FDA approval of anti-viral drugs which were stuck in the trial phase, so that new drugs could be made available to patients when they needed these quickly 99 Bring down the price of anti-viral drugs used for AIDS therapy 99 The “parallel track” programme they created enabled seriously ill patients to gain access to drugs which were still in the clinical trial pipeline, but had not yet gone through clinical trials 99 Increase funding for AIDS research AIDS patient advocacy paved the way for more effective medical research that was responsive to the patient’s needs. This group showed that patients that patient advocates can actually influence the design, manner and execution of clinical trials. AIDS garners a lot of media attention, but what happens when people suffer from rare diseases? They are treated as orphans by the medical community simply because pharmaceutical companies that fund research on developing new treatments tend to neglect these patients. They understandably give priority to studies on common diseases because these are much more likely to lead to the discovery of the next billion dollar blockbuster drug. Thus patient advocacy groups for rare diseases are often formed and run by patients themselves or by their family members. One such group is the Lymphangioleiomyomatosis (LAM) Foundation which was started by the mother of a young woman who died from LAM. When the young woman asked her mother endless questions about her disease to which the hapless mother had no answers, she promised her daughter that she would help to find them. Based on her determination to change the system, she started the LAM foundation (www.thelamfoundation.org) with the help of the physician who treated her daughter. Such rare disease patient advocacy groups have played a crucial role in: 99 Raising awareness about the disease 99 Gathering information about the disease and starting a registry for the same 99 Educating researchers about their disease and symptoms 99 Promoting research on rare diseases by raising funds for research activities 93
  • 82. Patient Advocacy Giving Voice to Patients Often patient advocates (www.rareadvocates.org) work together as a group to amplify their voice so that their demands are heard and met by researchers and the government. Following the success of ACT UP, LAM foundation and a clutch of other such organisations, many patient advocacy groups became active participants in research. New special interest advocacy groups mushroomed and their growth was so fast and haphazard, they began to interfere with research with disastrous consequences because they forgot about Murphy’s Law of Unintended Consequences. These loosely-formed groups naively began to expect that their participation would help in expediting the development of new drugs and that this would benefit patients by allowing them quicker access to new treatments. In one particular study, this intervention ended up playing havoc with the life of patients with metastatic breast cancer. A therapy called high dose chemotherapy with autologous bone marrow transplantation (HDCABMT) was being tested for treating women with advanced breast cancer. Phase II clinical trials had been completed and phase III trials were on. Before this stage could be completed, the patient advocacy groups overseeing the trials started to pressurise insurance companies to pay for this experimental therapy in regular clinical practise. The emotional pressure from patients who were clamouring for what was presented as a medical breakthrough ; and the negative media coverage because the insurance companies refused to cover for a treatment which was unproven and very expensive, forced insurance companies to cave in. Many women with metastatic breast cancer were treated with HDC-ABMT therapy. Several years later, the investigators reached the painful conclusion that HDC-ABMT therapy caused more harm than good, and it had to be abruptly abandoned. Since insurance companies had agreed to pay for this very expensive treatment, 41, 000 women underwent this futile, painful therapy, which even cost some patients their lives. This incident serves as an example of how overzealous and well-meaning patient advocates can end up inflicting harm on the patients they are meant to protect.To guard against such disasters, it is important that patient advocates gain scientific expertise about the disease, the drugs and clinical trials, before trying to leverage their clout to influence the decisions of researchers, policy makers or insurance companies. Critically-ill patients are desperate and willing to “try anything” to get better. At such times it’s important that patient advocates advice rationality. They should keep in mind that not all scientific experiments succeed and that a clinical trial means that doctors do not have all the answers - not yet. Medical research often progresses in an unpredictable fashion, and trying to fast forward it is not sound science. Clinical trials are conducted to gain knowledge and benefit future patients - they are not designed to benefit trial participants. In India, the Supreme Court and 94
  • 83. 17. Patient Advocates in Biomedical Research the NHRC Guidelines on Medical Research forbid monetary inducements for participants to safeguard their interests. In hospitals, clinical trials must have the approval of ethical committees that also invite lay people on the decision-making panel. In essence, these committee members function as patient advocates but they need to do their homework in order to understand the nature of scientific research and its limitations, in order to be able to contribute to the research process in a meaningful fashion. 95
  • 84. 18. Improving the Hospital Experience for a Patient It’s possible to become a patient-advocate without alienating hospital staff. You can help your patient without getting in the way of important tests, or hampering treatments D octors are not super humans and they cannot cure all their patients. However, sometimes they are so focussed on the technical aspects of the medical care they provide, that they forget that a pat on the shoulder and a reassuring smile can make a world of a difference to the patient. As a patient-advocate, you can help doctors and nurses deliver humane, compassionate and empathetic care to their patients. You have the resources at your disposal. You have the medical knowledge and you know how the system works. You know where to go for a second opinion; and you know which hospital has the latest technology and which doctor has specialised expertise. You know whom to contact in case of an emergency, what forms to fill out; and what formalities to complete. You can tap into your skills to ensure that patients are treated with love and care by the medical staff. A Win-Win Patient Mantra Apollo Hospitals Chennai has introduced a patient tracking solution called Patient Mantra. They use this to identify the location of patient in the health check-up process, so they can track how long they have been waiting at any given location. This helps them to resolve bottlenecks. It’s possible to become an advocate without upsetting hospital staff. There’s no need to rock the boat and put your patient’s life in danger. Being an advocate is all about being informed, present, persistent, and caring. It is not about being loud, arrogant, adversarial, or obnoxious. It’s a delicate balancing act, rendered with humility and helpfulness, where everybody has to learn to be a team player. 97
  • 85. Patient Advocacy Giving Voice to Patients Your ultimate goal must be to establish a relationship of trust. For as long as you are in the hospital, try not to throw your weight around, or come across as uncouth; don’t over react over minor issues or pull strings to fix small problems. Change the way you approach a nurse or ward boy for help. Use words like “Help,” “Excuse me,” “May I,” “Thank you” and “Sorry” as often as you can, before asking for a bedpan, a glass of water, a change of sheets, an extra pillow etc. You thank people who serve you at restaurants, so why not do it in the hospital too? If you are polite to nurses and ward boys, they will respond in kind. Have faith in the system. Believe that everyone wants to be helpful. Saying a sincere “Thank you” will make hospital staff feel good about their job and they will be more polite in the future. When a doctor visits, listen carefully before you start bombarding him with questions. Be prepared with your list of doubts. Don’t waste his time by beating about the bush – this just irritates a busy doctor. Surgeons will always have one foot out of the door, so prioritise your questions and get to the point quickly. Some staff members may still regard you as a nuisance. A few may appreciate your efforts and others may feel threatened. Don’t put them Discharge Planning on the defensive. Don’t let the negatives of a situation vitiate the hospital environment. On Mrs. Chadha was extremely excited about the other hand, don’t get cowed down by the finally being able to go home after a hospital staff either.You are not there to win prolonged stay in the hospital, where she a popularity contest - you are there to save was recovering from a critical illness. On a life. Not everybody has the skill or ability the morning of her discharge, Dr. Bhatia of being able to connect with others quickly co-ordinated with her advocate, who and easily, but a good patient-advocate has carefully reviewed all of Mrs. Chadha’s mastered this art. medical needs. A nurse met with her and her son to review all the medications. Because patients can’t fight for their rights Her advocate made arrangements with any better than defendants can argue their her doctor for the first follow-up. The own cases, or citizens can file their tax dietician carefully reviewed the diet returns without the help of a CA, patients plans ordered by Dr. Bhatia and the need the help of a patient advocate to physiotherapist reviewed her exercise make their hospital stay comfortable. In programme. When Mrs. Chadha left the fact, progressive hospitals are investing in hospital, she was pleased and grateful employing professional patient-advocates, that all of her follow-up care had been whose job it is to make the hospital more arranged by her advocate. hospitable. Patient advocates help to pamper 98
  • 86. 18. Improving the Hospital Experience for a Patient patients, so that they go home fully recovered, and full of praise for the hospital and the medical staff. Most doctors and nurses are professional and efficient in the discharge of their duties. But you still need someone who will put the patient first when she is in hospital - and no one can do this job better than a patient-advocate. An advocate provides personalised care to the patient. Every patient is entitled to the highest quality care - the kind a VIP gets when he enters a hospital. Patient-advocates can help to resolve complaints; gather feedback about hospital services; and implement suggestions to improve care and enhance patient satisfaction. These professionals should not be viewed as competitors to the medical team, but as partners who can fill the gap in services, and assist patients in negotiating the complex healthcare system. The real value of a patient-advocate lies in her ability to represent the patient - and every patient is special and unique. She can assist the doctor in understanding the patient’s experience and her personal preferences, so that the doctor can customise the solution he offers to the patient. A patient advocate helps the medical team to deliver friendly efficient and effective service, tailored to the patient’s needs, by being a partner, teammate and personal coach. To illustrate, let me give you an example: A 37-year-old patient with a serious lung infection had to be shifted to a ventilator and was put in a medically induced coma in the ICU. On the third day, he suddenly became alert and couldn’t figure out where he was. His arms were restrained and he could not spot any of his family members around him. He had had a tracheotomy done two days ago to assist him in breathing so he couldn’t even speak. When he came around, he naturally panicked and gestured wildly to the nurse attendant in the ICU. A Nurse-advocate The nurse-patient relationship is one of unequal power. Although the nurse may not immediately perceive it, the nurse has more power than the patient. The nurse has more authority and influence in the health care system, specialised knowledge, access to sensitive information, and the ability to advocate for the patient and his family. The appropriate use of power, in a caring manner, enables the nurse to partner with the patient and his family. Thankfully, she was a good nurse and she recognised that the patient was conscious and anxious. She rushed to the patient’s side, took his hand in hers and in a soft, crooning voice addressed him by name, while trying to assure him that everything was alright and that the doctors were making sure that his lungs were functioning normally. Then she offered to inform his family that he was awake.While doing all this, the nurse took care not to let go of the patient’s 99
  • 87. Patient Advocacy Giving Voice to Patients hand, made direct eye contact and spoke in a very warm, soft tone.The patient quickly calmed down - and was full of praises for the loving care he received. Another incident that a five-year-old’s father once narrated to me was when he was taking his toddler to a hospital for treatment of a profusely bleeding wound on the scalp. He was frantically looking for a wheelchair for his son in the parking lot, and although it was not his job, the parking attendant on duty rushed to fetch a stretcher for the little boy, who was placed safely in good hands in a few minutes. The parking attendant saw the father’s distress and responded to it with urgency.To this day, this father has not forgotten that act of kindness. The moral of the story is that everybody working in a hospital, from the sweeper to the surgeon, has a moral obligation to be a patient advocate.An example must be set by the senior management team, who should take daily rounds, and visit each patient personally, so they can resolve complaints before they snowball.The message will then percolate down all the way to the ward boy - because staff members imitate what their bosses do - not what they say. All hospital staff members must learn to read a situation from the patients’ point of view. Surrounded by a battery of specialists — cardiologists, endocrinologists, orthopaedists, neurologists, and more, patients are scared, confused, and vulnerable. Specialists are often too busy to give their patients the full attention they deserve. That’s when the others around them can step in to fill the void. If and when the opportunity presents itself, the supporting battalion of nurses, paramedics, ward boys, hospital administrators, and clerks must serve as patient advocates. It costs them nothing, but can deliver rich returns - both from the sense of personal satisfaction such acts of kindness generate; as well as the resulting enhancement of the hospital’s reputation. At the bare minimum, this would bring a smile to a harried patient’s face - and a patient who goes home with happy memories of her hospital stay will become a brand-ambassador for the hospital. While all the hospital staff (barring a few rotten apples) mean well and want the patient to get well and go home as early as possible, sometimes they are spread too thin. After performing ten surgeries in a day, a doctor can be expected to feel a little tired. A nurse may be feeling low, because she has just done a double shift, or the billing clerk may be cranky because he got ticked off by his boss – and in those circumstances, they are not able to give tender loving care to the patient - after all, they are human too. This is where a personal full time patientadvocate can shine - and help patients get the care they want and need. Playing the role of a patient-advocate 100
  • 88. 18. Improving the Hospital Experience for a Patient Even if you cannot afford a full time patient advocate, there’s a lot you can do personally to advocate for your patient. Once you arrive at the hospital and have provided staff with the information needed to admit or treat your loved one, you should: 99 Find out who the “attending physician” is. This is the person who will coordinate and oversee your loved one’s care, work with consulting physicians and specialists, and have responsibility for your patient’s treatment plan. 99 Get the phone numbers for the attending physician and make sure that he knows how to contact you directly regarding your loved one’s care. 99 Keep a list of questions ready to ask your attending physician. You never know when the doctor will show up by your patient’s bedside. A typical visit won’t last more than 10 minutes. If, for some reason you won’t be in the room when the doctor visits, leave your list with the nurse. 99 Introduce yourself to the nursing staff. They will be providing the bulk of the handson care to your loved one. They should be able to answer most of your questions on medication, treatments or procedures. If they can’t, they will direct you to another clinician who can. Nurses typically work on 12-hour shifts (i.e. from 6 a.m. to 6 p.m.) so find out when the shift change is and try to wait until the nurse on duty has the information she needs to answer your questions. 99 Get to know the hospital’s discharge planner or case manager. It is their job to help with discharging your loved one and ensuring that you have all the information you need before leaving the hospital. She can provide you information about local resources, referrals to other medical professionals, when to follow up, etc. 101
  • 89. 19. Meeting the Special Needs of Patients Not all patients will have similar needs. As a patient advocate, your responsibility is to tailor your services to the specific needs of your patients A frail 81-year-old woman was counting her last few breaths. Her physician met with the family and they all agreed Patient Pilot that comfort care was the best option for this patient. They quickly shifted her to a quiet corner This is a mobile application, available from the Apple of the intensive care unit (ICU) where Store (www.patient-pilot.com/a/#!prettyPhoto). A she would not be disturbed by the mobile medical navigator, PatientPilot coaches you regular flow of incoming and outgoing on your journey through the healthcare system and offers tips on what questions to ask your patients. doctors, how to find essential and reliable medical The entire family of five sons, three information and how to make the right medical daughters, their husbands, wives, decisions. PatientPilot’s guidance is gleaned from and several of her grandchildren had more than 125 authoritative sources in the gathered at the hospital, waiting to medical and patient advocacy communities. You meet her during her final moments. can log into the database anytime and anywhere – Although they took turns, there were not just at home, but in the waiting room, during still too many of them, and they were an appointment, in the hospital room and at the crowding the small waiting room. The pharmacy. nurse-advocate assigned to them by the hospital, took stock of the situation and decided to take the doctor’s permission to move the dying woman to a different, less-crowded floor of the hospital. She personally supervised all the preparations and professionally explained to the family that this was in the best interest of the patient. They agreed and she was shifted uneventfully. The doctor visited them a couple of times in the night and saw them huddled around the matriarch, holding hands and praying for her peaceful passage. The dignity with which they let her go moved everyone who watched them to tears. 103
  • 90. Patient Advocacy Giving Voice to Patients In doing all this and more, the hospital had made no big sacrifices. However by providing them with a little privacy and quiet, the nurse-advocate had given them the strength to deal with this difficult hour. After the woman passed away peacefully in her sleep early the next morning, the nurse-advocate told them to take all the time they needed to mourn her. When they left, one member of the family quietly hugged the nurse-advocate and said “I am also a nurse at a private hospital. But today, I learnt an important lesson in patient care from you. Thank you for being our advocate.” At times such as these, being an advocate can make a world of a difference to a patient and her family. The advocate can bend the hospital’s rigid rules, to allow an often heartless bureaucracy to put the patient first.When a loved one falls ill, finding the right doctor and getting the right care is all that matters to a patient’s family. Sick patients and family members are vulnerable and can easily get lost in the labyrinth of today’s complex medical system. Effective case management and intervention by patient-advocates can allow the hospital and doctors to tailor care to meet the family’s needs, by establishing better communication channels among the patient, her family and health care providers. “Did you get a second opinion?” is the question people often ask a patient’s family. Arranging for a second, and if necessary, third opinion is another area where a patient-advocate can make her contribution count. Because time is of the essence when the condition is serious, patient advocates can be useful in providing joint consultations and securing speedy appointments; whereas in the case of chronic illness, patient-advocates can maximize your sense of wellness.They can monitor your progress on a regular basis, check in routinely with your What You Can Demand From doctor and ensure that the appropriate medical Your Advocate protocols are being followed. ff You have a right to ask for and Typically, a patient advocate will meet with the obtain complete information doctor to discuss and outline a patient’s treatment about your care and treatment. programme. She will then work with the patient ff You can ask about any drug you and her family to make them understand the are being given. implications of the disease; explains the various ff You can request medications that treatment options; and last but not the least, you think might help you. identify any gaps in care and help plug those loopholes by meeting with the healthcare service ff You can expect your role and your caregiver’s role to be treated providers on behalf of the patient.This can require with respect. a lot of coordination, because the healthcare world is often fragmented, and one specialist ff You can request a second opinion. 104
  • 91. 19. Meeting the Special Needs of Patients often has no clue what the other is doing. Here are a few other categories of special needs patients for advocacy efforts: Patient-Advocates for young children A father was playing ball with his two young children. One of the children got hurt in the head with the hard ball. She appeared to be fine, but on the third day after that incident, she started complaining of severe headaches. The alarmed parents took her to the emergency room of a local hospital, where the resident doctor even after knowing the child’s head trauma, diagnosed it as a viral infection and proceeded to send her home to rest. The parents did not feel comfortable with this advice. Their gut instinct told them that something was seriously wrong.When they politely suggested a CT scan for the child, the doctor felt insulted. Refusing to be cowed down, the parents dug their heels in and the doctor had no choice but to order the test that confirmed the parent’s worst fears - the scan showed bleeding into the brain, most likely caused by the head injury. Had the parents taken their child home to “ sleep off the virus “ that night, their child probably would never have woken up. It’s your child. Go with your parental gut instinct. Your child doesn’t have a voice, and you need to stand up and be her advocate. Patient advocacy for the mentally-ill Sunita Nair (45) got admitted into the inpatient/acute care psychiatric unit after a foiled suicide attempt. She was kept under observation for two days and looked clinically depressed. She had poor appetite and no interest in social interaction. In addition, she expressed ambivalence about acting on her suicidal thoughts, at times denying and at times endorsing those feelings. On the third day the patient denied suicidal ideation. The physician decided to discharge her, because she was no longer actively suicidal. However, her patient-advocate, who spent much more time with Sunita and had a much better rapport with her than the doctor, thought differently. She believed that the patient needed more time in the inpatient unit and the doctor was wise enough to listen to her reasoning. This intervention may have saved Sunita’s life. Patient advocates and organ transplantation Patient advocate work closely with hospitals, organ and tissue banks to identify organ donors and ensure suitable matches for terminally-ill patients in need of transplants. The decision to donate an organ or undergo a transplant is not a decision families make lightly. Patient advocates provide reassurance, resources and advice to patients at that difficult hour. 105
  • 92. Patient Advocacy Giving Voice to Patients QUIZ TIME: Advocacy in Special Circumstances Advocates can shine when your patient has a need and you speak up for them and help them get their needs addressed. 99 Your patient has just had surgery. The doctor has prescribed pain-killers, but they are not taking effect and the patient is still in a lot of pain. The order says she can’t have another dose for three more hours. What do you do? 99 Your patient is a vegetarian but receives meat on her dinner tray. What do you do? 99 Your patient is a Muslim and must offer namaz at least five times every day. He has even carried a prayer mat to the hospital with him. What help can you offer this patient? 99 A young mother suffers haemorrhage after giving birth to a child. She is in the ICU and requests that she be allowed to see her baby at least once, in case she dies. The hospital has a policy – they do not allow infants into the ICU. To complicate matters, the mother is so ill she can’t be taken to the nursery. What would you do? 99 A patient is about to be discharged with a long list of prescriptions. She confides in you that she is a single, jobless woman and cannot afford some of those costly medications to get better. What would you do? Please note that these questions don’t have any right or wrong answers. But mulling on these tricky situations and thinking of the appropriate response might help you figure out your roles and responsibilities as a patient-advocate. 106
  • 93. 20. Engaging Patients to Improve Treatment Outcomes Dr Dhivya Ramasamy Positive health outcomes depend not just on the clinical but also on the non-clinical aspects of a patient’s treatment plan O ver the years, thanks to rapid advances made in understanding the causes of various diseases and developing newer methods of managing them, healthcare providers have been successful in bringing about wide scale improvement in patient care. Today, we have effective clinical solutions in place to treat most diseases. However, even those diseases that can be treated through well-established, standard treatment protocols, such as cataracts or refractive error, remain poorly addressed –cataract continues to be the number one cause of blindness in the world, mainly because of non-clinical, patient-related factors that impact positive clinical outcomes (Source: Donatella Pascolini, Silvio Paolo Mariotti; Global estimates of visual impairment: 2010; Br J Ophthalmol 2012; 96:614-618). Aravind Eye Hospitals in Tamil Nadu has been grappling with this challenge for years and has striven to address this issue through active patient engagement. This article explores the potential of engaging patients in their treatment to achieve better treatment outcomes. When can the treatment protocol be deemed to be effective? How do we measure the effectiveness of a treatment plan? That’s a tricky question. At any healthcare establishment, the metric used is the number of patients seen or the number of surgeries performed. Let’s examine how this metric would apply to an eye care facility. Given our progressive national eye care programme and the wide spread use of communitybased outreach camps, a significant number of patients get examined and identified for cataract surgery, every year. However only a fraction of those advised surgery, actually undergo it. The acceptance of cataract surgery is reported to be around only 14% in the community and 45% 107
  • 94. Patient Advocacy Giving Voice to Patients in hospital-based settings. Knowing that surgery is the only solution for treating cataract, how do we ensure that those with cataract seek care and undergo the surgery? Similarly, children with uncorrected refractive error have a significant disadvantage and tend to do poorly in studies and sports.This can adversely affect the future career prospects of the child. While spectacles provide a simple and cost-effective solution, it has been reported that compliance with spectacle wear among school children remains as low as 30%.How do we ensure that the needs of children with refractive error are effectively addressed? As a third example, patients with glaucoma (a chronic ocular condition) are required to be on continuous medication and must come for essential annual review visits. Patients with poor adherence show progressive worsening of the disease. Yet, adherence to medication is poor. Also, the adherence to the essential follow visits drops to less than a third by the fourth year. How do we enable glaucoma patients to have their disease effectively controlled? The inference from these examples is that for any treatment to be truly effective, it’s important that each and every patient successfully completes his treatment journey: Figure 1:The Patient Journey While we advocate this treatment pathway to all our patients, in reality we see patients drop off at different points along their journey, eventually rendering the treatment ineffective. Over the years, we have experimented with the following strategies to reduce this drop-off rate: Patient engagement Given that much of the treatment depends on the behaviour of the patient, our strategy has been to nudge him in the right direction. Actively engaging patients in their treatment plan can help in positively influencing their role in seeking care; adhering to the treatment advised; following instructions for self-care ; and returning for review visits. Helping patients seek timely care Awareness creation through well-designed health education programmes targeted at the appropriate audience can help patients identify symptoms and seek timely care. Squint or strabismus is considered to bring good luck, hence parents in India often do not attempt to 108
  • 95. 20. Engaging Patients to Improve Treatment Outcomes correct these conditions. It is important to break such misconceptions. Parents should be made aware that strabismus can lead to severe visual impairment, so they must act fast. Low birth weight children are at risk for Retinopathy of Prematurity, leading to degeneration of the retina. This can be controlled if managed within three weeks of birth. Thus it’s essential to make pregnant mothers aware of this condition so they can seek timely care for their premature babies. Partnering with opinion leaders in the community For conditions that are widespread in the population (such as cataract and diabetes), it’s important to rope in youth volunteer groups, NGOs, Rotary Clubs, etc to assist in information dissemination. Helping patients make the right decision At Aravind, counselors are an integral part of our clinical team. They ensure that patients have the opportunity to voice their concerns and clarify their doubts. Today, the cataract surgery acceptance rate is about 75% in our hospital, and about 85% in the outreach camps, thanks to the presence of these counselors. Aravind’s counselors are recruited when they pass out from high school and are intensively trained for two years in : the basics of how the eye works; its diseases; treatment options; and counseling techniques. Regular monitoring and performance feedback help them perfect their counseling skills on an ongoing basis. Highlights ff Treatment effectiveness must be measured along the entire treatment pathway ff Patient barriers must be factored into your care delivery ff Hospitals must proactively engage with patients to create more awareness about their treatment choices ff Cultivating community partners can have a positive impact on treatment outcomes ff Counseling can be a powerful tool for patient engagement and enhances adherence Patient Motivators We’ve discovered that where patients face emotional and psychological barriers to following medical advice, peer counseling is very effective. In the early 1990s when cataract surgical acceptance was poor, Aravind found the use of aphakic motivators was the most effective means to convince patients to undergo cataract surgery. These were patients who had undergone the surgery themselves and were able to share their experience with those being counseled. 109
  • 96. Patient Advocacy Giving Voice to Patients All said and done, patients have different information needs.Their concerns and questions are unique to the stage they find themselves in (Figure 2). Patient engagement strategies must be customized to address these specific needs and the individual’s treatment goals. Figure 2: Information Needs of the Patient (Source:The Informed Patient: Study Report, March 2003; D.E. Detmer, et al; Judge Institute of Management, UK) In the final analysis, the hospital must take full ownership of patient disengagement and find innovative ways of engaging patients to help them reclaim control over their lost health. 110
  • 97. 21. How Patient Advocates Can Promote Medical Tourism 21. How Patient Advocates Can Promote Medical Tourism An independent patient-advocate can guide an overseas guest to the right destination I n 2010, over five million patients travelled to other parts of the globe in search of better health care. The growth of medical tourism is driven by two factors: 99 Steep rise in the medical costs in developed countries and 99 Improved health care infrastructure and better healthcare standards in developing nations. A favourable currency exchange is a major driver for medical tourists. Each dollar spent in Indian fetches more value for a healthcare consumer than is possible in the US. In terms of infrastructure, many hospitals in Asia are now equipped with state-of-the-art medical equipment. Their doctors and surgeons have received their training in the best medical universities across the world. India is also home to some of the most fascinating holiday options in the world. Since resting and relaxing are important ways of recuperating after a surgery, what can be better than clubbing medical tourism with luxury travel and patient advocacy? Recognising the huge business opportunity in this field, governments, large hospitals and doctors are flooding the medical tourism market with attractively packaged deals and services, making the final choice of a hospital extremely difficult for a patient. This is where an independent patient advocate can be of service to an overseas patient. He can impartially advise the patient on what hospital to choose for a particular procedure, so that they do not get swayed by their misleading marketing hype. He can educate the traveller on what costs to expect; who the specialists in each field are; help them get appointments expeditiously and guide them on where to stay and how to follow-up after the procedure is completed. Indian culture has always laid get stress on treating visitors as respected guests. Medical tourists require a lot of hand holding, and patient advocates are well-equipped to meet their needs. 111
  • 98. SECTION 5 IN THE EVENT OF MEDICAL NEGLIGENCE
  • 99. 22. Helping the Patient File a ComplaintUsing the Law to Strengthen the Patient’s Voice When you want to make a complaint but don’t know where to start, go to a patient advocate O n January 17, the Supreme Court of India directed a Hyderabad-based superspecialty hospital to pay Rs 2.05 lakh as compensation to the widow of a patient who had died of a heart attack, while being treated at the hospital for a shoulder injury. The National Consumer Disputes Redressal Commission (NCDRC) said the inability of the hospital to explain what caused the patient’s death left many questions unanswered. Why Speak Up at the Hospital? ff To improve the situation after a mistake ff To take action for preventing the problem from becoming worse ff To take action that can prevent the problem from happening to others Not every medical error is preventable. And despite taking every available precaution, you may still be exposed to a medical error. In the event you are harmed by a medical error, you may be concerned for your health, frightened of the possible consequences, angry at the doctor’s mistake or his callous disregard of the consequences.You may be seething with anger and battling with a sea of uncontrollable emotions. You may be feeling utterly helpless and vulnerable, and may not know what to do next or how to report the incident, or even, who to report it to? Fret not. Go to a patient-advocate. Since this is not a formally recognized role in India yet, look for a person who is seasoned and mature to act as your advocate before you seek a meeting to sort out issues with the hospital administration. 115
  • 100. Patient Advocacy Giving Voice to Patients What is a “medical accident”? If something goes wrong during medical treatment, this is called a ‘medical accident’ or ‘adverse event’. In some cases, complications are unavoidable risks of a treatment. For example, if an elderly patient chooses to undergo a heart bypass surgery, he and his family should understand that this is a risky procedure, and complications can occur, no matter how careful or competent the doctor is. ‘Clinical negligence’ is the legal term used to describe a medical accident where a patient has been harmed, not because of a complication that could not have been avoided, but because a doctor did not deliver the proper standard of care. It doesn’t always mean that the doctor handling the procedure was incompetent – it just means that he made a mistake that he shouldn’t have. When to Call a Patient Advocate If you need support in getting answers or in obtaining documentation. When you want to make a complaint but don’t know where to start. When you are considering legal action but would like some answers first. When you feel lost and vulnerable in the complex healthcare system, while battling a serious illness. When you wish you had more support, but don’t know how to get it. When you need an independent person to represent you. When you simply need someone to listen. Clinical negligence may include: 99 Making a mistake during surgery 99 Carrying out a procedure without the patient’s consent 99 Administering the wrong drug to the patient 99 Making a wrong diagnosis Clinical negligence can also include not doing things that should be done, such as: 99 Not giving timely treatment 99 Not warning the patient or the family about the risks of a particular treatment 116
  • 101. 22. Helping the Patient File a Complaint- Using the Law to Strengthen the Patient’s Voice When you have a complaint… Inform the doctor that you would like answers to questions about your care. Be firm but also be polite. Next, have a strategy in hand.Think A Case-in-Point through all your questions and write them all down. Run these past your patient-advocate. A 64 year old diabetic man was planning Inform the hospital in advance that a friend to sue his health insurance company. The will accompany you to this meeting in order insurance company had rejected his claim to help you understand the medical issues. for reimbursement, saying that his illness was pre-existing (it was present before he Know how much time you have been allotted took out the policy.) The advocate pulled for the meeting and ask your questions in out his medical history and organised all order – the most important ones first. If his records. He pored over the patient’s your doctor won’t speak to you (which is papers, consulted various medical experts common) seek an appointment with the and was able to finally prove to the hospital’s complaints redressal department insurance ombudsman that the claim (if they have one), or the human resource was justified. The patient was able to department. If they ask you to file a written get his claim reimbursed without having complaint, be careful how you draft this. You to go through the hassle of filing a case. may later, depending upon the outcome of Later on, the advocate contacted other your meeting, intend to file a suit against the insurance companies about supplemental hospital, in which case, you need to be extra medical plans for this patient, arranged careful about what you commit to paper, conference calls with those companies because this can be used as evidence. to see what plan best met the patient’s Don’t be provoked into saying anything that needs, and got his insurance provider you may regret later. Don’t convey a sense of changed so that he would have hassle-free having been wronged. Read and re-read your settlement of claims in the future. questions a few times to make sure that your charges are well-substantiated and that they don’t come across as wild, baseless accusations. If you are not successful in resolving the issue, you have three choices in the matter: 99 You can file a complaint against the doctor with the State Medical Council 99 You can file a complaint with the State Consumer Court 99 You can file a criminal lawsuit against the erring doctor and hospital in a court. 117
  • 102. Patient Advocacy Giving Voice to Patients This last, your patient-advocate might warn you, could turn out to be the costliest route in terms of money and time spent. Consumer court is best if your main purpose is to seek monetary compensation. These cases also get settled faster, typically within a couple of years, but the hospital may appeal at the level of the national commission, which means it may get stuck for another couple of years. In contrast, a civil or criminal suit can take more than a decade or two to settle. Go through the Medical Council of India website (www.mciindia. org/) carefully to know the procedure of filing your complaint there. They will investigate the matter and in rare cases, can penalise the doctor by ordering a suspension or cancellation of his medical license. Remember that…. Doctors aren’t perfect, and they too make mistakes. As buyers of a medical service, patients have every right to raise their voice against medical negligence. You can’t be expected to accept deficient care or poor treatment. Making a formal complaint won’t just benefit you as a consumer, but it may also benefit the community at large, and perhaps act as a deterrent in preventing the doctor or hospital from making similar mistakes in the future again. Most cases of medical malpractice involve How to Speak Up at the Hospital negligence or acts of omission by doctors who fail to meet the standards of treatment that their ff State your concerns, needs, and expectations clearly. patients both need and deserve. ff Rest assured that complaining will not compromise your care. Hospitals want to A patient-advocate, trained in resolve your problem as quickly as possible. legal matters should be able to help you: 99 Establish that a medical duty was owed to you 99 That the duty owed to you was breached in some way. 99 That this breach caused some sort of injury or death, and finally, 99 That the hospital now owes you compensation for the damages causes. These damages can be physical or emotional, ff You should be clear about your own expectations. What do you want? What do you expect the hospital to do? This allows the hospital to know how they can help. ff If you do not receive a timely response, or want to address a problem after you’ve left the hospital, contact the hospital’s customer service ff You can use the staff of the patient and family relations department as patient advocates to discuss your case and how best to proceed. ff It is usually best to resolve problems through face-to-face conversations. These can result in better and faster understanding. 118
  • 103. 22. Helping the Patient File a Complaint- Using the Law to Strengthen the Patient’s Voice Listening is a key skill of an advocate. Even patients know that advocates are not experts in medicine or surgery. But when someone listens to them with empathy, letting them vent, they can heave a sigh of relief.They are reassured that there is someone on their side, who will help them sort out their problem. 119
  • 104. 23. Dealing With Angry Family Members Patient-advocates can help hospitals deal with angry family members W hen people are anxious or angry, they may not be able to make sense of what a doctor is saying. When tempers run high, they find it difficult to express their most pressing concerns. Strong emotions can make processing new or complex medical information more difficult. What can be done in such a scenario? Get a patient-advocate on board. Hospitals are stress-inducing places for all the right and wrong reasons. Patients and family members may experience a sense of loss of control in such When a Family is Angry an unfamiliar environment. They often do not ff Don’t argue, even if you know understand a lot of what is going on and may feel their complaint is unjustified vulnerable, helpless and stripped of all their rights and options. However this is a wrong perception. ff Listen to what family members have to say — they might calm Even in hospitals, patients have rights, as well as, down if you listen to them and responsibilities. It’s the advocate’s responsibility to share their concerns make them understand both. ff Do not insist on a meaningful Intense anger or anxiety can get in the way of good conversation when families are treatment and care. Once an 80-year-old patient emotionally upset and are not was scheduled to undergo surgery for prostate ready for this cancer. He and his wife arrived on time for their ff Healthcare is a joint effort early morning surgery. The nurse at the reception between patients, families, and told them that the surgery was delayed until the health professionals. Be clear afternoon. By mid-afternoon, they were told that and specific about what each — due to several unexpected emergencies — the person can do to help surgery had to be postponed to the next day. ff Encourage family members to Already anxious about the upcoming surgery, the patient and his wife got so angry, they were ready 121 participate in the loved one’s treatment.
  • 105. Patient Advocacy Giving Voice to Patients to walk out of the hospital in a huff, but were calmed down by a patient-advocate. Yet the patient couldn’t sleep two winks that night, kept tossing and turning on his bed and his wife, who was even angrier, seemed to complain about everything in the room, including the AC, the water tap, and the cleaner. The next day, when the patient-advocate turned up for his visit with the couple, the wife pounced on him with the words, “Please tell us how to get out of this hospital?” Maintaining his cool, the advocate smiled, patted the woman’s hand gently and said, “Why don’t you tell me what can I do to help you get through this tough day?” That immediately calmed down the two and the wife began to slowly confess her fears and frustrations to the advocate. The advocate also took his time, explaining why surgeries have to be postponed when more serious cases arrive, and requesting them to be a little more understanding and patient with the hospital staff. The fact is that while hospitals are familiar places for doctors and nurses, for patients and their families they can be extremely scary. Even routine events and procedures can produce anxiety in such patients. An eye check up can feel as traumatic as open-heart surgery. Knowing what people feel and helping them relax with comforting words can make a doctor’s job simpler, and this is what an advocate is trained to do. A doctor once called up a patient-advocate saying, “This patient doesn’t understand anything. She refuses to go home. Can you please go and drill some sense into her thick head?” The patient-advocate went and spoke to the distraught woman. Later he came back and asked the doctor, “Did you ask the patient why she didn’t want to go home?” “No,” replied the confused doctor. “Because she’s homeless and has nowhere to go…” Unprovoked, nameless anger can be an expression of helplessness. It’s the patient-advocate’s job to see through the façade and dig out the real source and meaning of that anger and help resolve the issue quickly and efficiently. 122
  • 106. 24. Managing Conflict of Interest Patient advocates need to learn how to resolve conflicts A patient advocate once was concerned that giving chemotherapy to his client was causing him more harm than good. During the course of the treatment, the patient would often complain that he was in agony, telling his advocate, “I can’t take it any more” and the advocate would faithfully relay his misgivings to the doctor team. The head of the team didn’t see any merit in the advocate’s objections and ruled them out. Over the next few months, the advocate watched the patient suffer in silence, through treatments that the advocate believed he would not have chosen had he been informed in advance about the pain they might cause him. The patient finally died, but only after the chemo had left him with unstoppable and painful bleeding in his bladder, robbing him of a more peaceful and comfortable end. Patient advocates have to perform a difficult balancing act. Their primary role is to help their patient, but they don’t want to escalate an issue and alienate the hospital staff either. How do they keep both parties happy? The biggest challenge in medical practice is the growing conflict between doctors and patients – especially over costs. Disagreements can arise over many issues – ranging from continuing aggressive treatment for a critically-ill patient to refusing a patient’s request for antibiotics to treat a viral infection. End-of-life issues are especially highly emotionally charged, requiring active involvement of a patient-advocate. When conflict arises, communication channels break down and it’s left to the patient-advocate to sort 123 When to Fire Your Patient Advocate Mrs Desai had advanced breast cancer which had spread virulently. Her daughter and husband was told that she was likely to die soon. They were wondering how to break the news to her, and eventually the job was entrusted to the daughter. As they were about to enter the room, they heard the patient advocate say, “Are you resigned to die?” Those were his exact words. The two attendants felt shocked at his insensitivity and burst into tears. No marks for guessing what happened to the patient-advocate.
  • 107. Patient Advocacy Giving Voice to Patients things out. A mature advocate understands that at the heart of such conflicts is usually a clash of values, and because these are hardest to resolve when everyone is emotionally labile, his first priority is to defuse the emotions and change the climate of mistrust to one of common ground. A useful mnemonic which experienced patient advocates use to deal with upset patients is called RAPSAND. 99 R = Re-establish rapport (Empathy) 99 A = Agreement (Get the patient to say Yes) 99 P = Problem (Define this) 99 S = Solution 99 A = Ask Permission (Is the patient happy with the solution you have offered?) 99 N = Next step (Follow up) 99 D = Document The most worrisome conflicts are those which arise over treatment choices. If they are not promptly resolved, they can mar the doctor-patient relationship and have an adverse impact on the patient’s outcome. Resolving such conflict is therefore the first priority of a patientadvocate. If he has been employed by the hospital, he has to make sure that he puts the patient’s interests first, and is not seen to be acting in a manner which suggests that he is an agent appointed by the hospital to protect their interests. The moment a patient feels that an advocate is representing the hospital, he is likely to lose faith in him. Instead what he needs to do is: 99 Drive maximum patient participation in care decisions 99 Develop mutual trust and respect between the doctor and the patient and his family 99 Help improve a patient’s experience of a hospital by explaining the hospital system to them, and emphasizing care, compassion and connections 99 Be seen as impartial ombudsman, to whom patients, as well as the hospital staff can provide feedback in confidence 99 Provide a mechanism for patients and families to cut through the red tape and avoid delays in emergency care 124
  • 108. 24. Managing Conflict of Interest Let’s not forget that patient advocacy is a new discipline in India. A patient advocate has been introduced as a new component in the care delivery chain, and can help to provide legitimacy to the patient’s voice when the healthcare system ceases to listen. If an advocate is appointed by a government agency (as in the West), he is expected to establish formal programmes for safeguarding patients’ rights, and assist hospital staff in understanding their duties and the patient’s rights. As a third party, he is expected to balance the interests of both parties and provide medical and non-medical support in both inpatient and outpatient care. They are also a trusted source of information, referrals, and navigation. Once an 80-year-old poor, illiterate woman with breast cancer was being treated like a senile senior citizen by a resident doctor in a stuffed-to-the-seams government hospital. A concerned citizen watching this interaction decided to act as her advocate and came to her aid. To his surprise, he discovered that the woman was very perceptive. However, because she was illiterate and new to the city (having just arrived from a village) she felt intimidated by her surroundings; and because of her illness, she was not mentally alert enough to be able to make her own medical or financial decisions. The busy surgeon was treating her like an imbecile, but the advocate invested his time in talking with her, listening patiently, and asking her the right questions, so she could understand her treatment options. Later he took upon himself the job of meeting with her physician. The physician’s approach to this patient also changed, once he found someone was taking an active interest in her case and documenting his discussions with the patient. He quickly became more respectful and thoughtful. Because patient advocates collaborate closely with hospital staff on patient safety and qualityrelated issues, they can help hospitals identify opportunities to improve patient satisfaction, and bring about much-needed improvement, especially for poor, uneducated patients.Whether through position or persuasion, patient advocates can make good use of medical data, and offer sensible recommendations so the government hospital can improve its track record.. A doctor once had a serious difference of opinion with the father of a little boy, who had met with a road accident. The father felt that his son would benefit from a particular type of physiotherapy. The doctor didn’t. The father brought him loads of health literature but the doctor was not impressed. They argued over the matter. Finally, they both agreed to get a third – independent – opinion. The doctor called in another doctor-friend to act as a patientadvocate. This second doctor read the patient’s report and medical file. Ultimately he agreed with the father’s point of view and said there was no harm in trying out the therapy for a short span of time and if it didn’t work, they could always change it later on.When they heard 125
  • 109. Patient Advocacy Giving Voice to Patients him, both men laughed. An ego-conflict was amicably resolved. Later, this second doctor also helped the patient’s father get the therapy reimbursed by his insurance company. To this day, the patient remains grateful to the advocate and speaks very highly of the first doctor, who put him in touch with this advocate. For every health problem – big or small, he always goes back to the same hospital. The moral of this story is - whatever you do; don’t let a patient walk out of your facility disillusioned, angry or dissatisfied. When you can’t reach an agreement, get an advocate on board. He will resolve the issue in the most humane way. 126
  • 110. SECTION 6 MEDIATING WITH THIRD PARTIES 127
  • 111. 25. Mediating With Insurance Companies In the complex world of modern medicine, where hospitals bills are often paid by insurance companies, you need someone to negotiate on your behalf T wo days after surgery to replace both his knee joints, a social worker employed by a hospital informed the patient that the insurance company would not pay for his stay at the hospital any longer. However observing that the patient was barely able to get to the bathroom unaided, the patient-advocate, on her own accord, informed the insurance company that the patient was not ready for discharge and insisted that he be given at least one more day’s stay in the hospital. The request was granted and the patient was grateful for the advocate’s timely intervention. Left to his own devices, he was in no shape to argue his case with the insurance company call center staff, whose primary goal is to save money for the company, and who do not care about a patient’s well-being. In the complex world of modern medicine, where hospitals bills are often paid by insurance companies patients - especially those who are critically ill, need a patient-advocate -, someone to negotiate on their behalf with the insurance company, to ensure that they are receiving the care that they deserve. Mahesh Sharma was stabbed in the neck by unknown miscreants and was seriously injured. He was rushed to a nearby trauma center, but the problem was that this centre was not affiliated to the health insurance company from which he had bought a health insurance policy. Cashless care was therefore ruled out. His wife settled the hospital bill and six days later Sharma was discharged from the hospital. Four weeks into his recovery, he received a letter from his insurance company informing him that his claim for reimbursement was denied because the trauma centre was not part of their service network! He consulted a friend who informed him about a non-government patient-advocacy group that mediates with insurance companies on behalf of consumers like Sharma. Six months later, with the assistance of this advocacy group, who petitioned the IRDA (Insurance Regulatory 129
  • 112. Patient Advocacy Giving Voice to Patients and Development Authority), Sharma won his the case, and besides the cost of the treatment, he was also awarded damages for delay and needless harassment caused by the insurance company. When you file a claim, you need to study the fine print in your insurance policy carefully.There are likely to be terms such as deductible, coinsurance, co-pay, out-of-pocket limit, definitions of out-of-network and emergency services; and details of the appeals process, that may not be immediately clear, because they are couched in dense legalese. A patient-advocate can help you make sense of these ! Literacy on insurance related issues is extremely low in India. You may think you deserve full reimbursement, whereas your policy may provide only for partial pay out. Sit with your advocate and understand your entitlement before you file a petition. Remember that besides resolving disagreements between patients and insurers, the main responsibility of a patientadvocate is to give more information to citizens about health insurance in an objective, professional and impartial manner. 130
  • 113. 26. Arranging Concierge Services A patient-advocate won’t let a patient feel like a medical statistic. He can make him feel like a special customer W hen Nisha Malhotra got diagnosed with brain cancer, she knew she needed to make a few urgent decisions and that she needed the help of a compassionate, knowledgeable patient-advocate. Abroad, retired general physicians often use their years of clinical experience and expertise to become patient-advocates in order to help patients like Nisha identify specialists, treatment protocols and facilities which are renowned for being world-class for treating her disease. Some mature into specialist patient-advocacy firms, taking on board former healthcare administrators and registered nurses. They function like mediators, helping connect patients with doctors and vice-versa. When required, they also negotiate with insurance companies on patients’ behalf. Components of a Master Care Plan ff Assist with the care coordination process ff Schedule medical visits (physician appointments, lab visits, etc.). ff Prepare for medical appointments, including developing lists of questions to ask the doctor. ff Provide documentation of pertinent medical information. ff Arrange for patient transportation to and from medical appointments. ff Coordinate care assistance with other health professionals, such as social workers, physical/occupational therapists, home-health care givers, and nursing home staff members. Although many patients are net savvy and can access most health-related information online, it still takes a lot of time to research your condition, find the best experts, and negotiate with insurance companies. In cases of rare or chronic illnesses, accessing these services poses an even greater challenge. 131
  • 114. Patient Advocacy Giving Voice to Patients Abroad, government-funded wellness programmes offer concierge services and provide patient coaching, resource mobilisation, rehabilitation and disease management.These services are generally customised to individual patients and their families, and continue long after the medical procedure is completed. A mother of two who works as a school teacher, Sangeeta Chuhan was finding it difficult scheduling a meeting with a paediatrician for her eight-year-old daughter. She was surprised how fast the appointment got made through a patient-advocate, in this case a friend of the paediatrician’s secretary. In India, since the practice is still evolving, you may not easily find such advocacy firms, but there are always people around you, who perform this role informally. These people can: 99 Assist you in locating doctors, specialists, and treatment facilities locally and nationally. 99 Help you organise your medical records, including current prescriptions, drug allergies, past surgical history, and other data. When in Need, Call Out to Your 99 Draw up an individualised medical plan, Advocate based on the doctor’s medical advice, set medical goals and explain and help Sunita Manchanda is recovering you adhere to the various treatment from a stroke that left her right side protocols. paralysed. She and her doctors have tried several treatment protocols, 99 Avoid irrational drug combinations with some success. One particular through diligent case management. night, however, Sunita couldn’t get to 99 Let’s face it – it’s not possible to receive sleep because the pain was worse good medical care unless you learn to than ever. She didn’t want to awaken effectively manage that care. Patienther doctor at 2 a.m., so she spoke to advocates can help you do that. In the doctor’s secretary knowing that addition, they can: she would receive a response after 99 Schedule medical visits (physician he, acting as her advocate, spoke to appointments, lab visits, etc.), when they her doctor. Just knowing that she are due and send reminders to you. could contact her doctor through her 99 Accompany you, if no one else from advocate comforted Sunita enough to your family is available. let her get back to sleep peacefully. 99 Take notes during the consultation and make a record of it, afterwards. 132
  • 115. 26. Arranging Concierge Services 99 Arrange for your transportation. 99 Co-ordinate visits with allied health professionals, such as social workers, physical/ occupational therapists, nursing home staff members etc. 99 Make alternate living arrangements (e.g. assisted living facilities) for you, so that your dignity, independence, safety, and social life are not compromised by your illness. Given the vast number of hospitals and medical specialists who claim to deliver cutting edge care, it’s becoming impossible to manage and understand all the information flying around. Patient advocates sift and sort through this information, de-codify it and present it back to you in lay-friendly language. In this process they: 99 Relay physicians’ diagnosis and lab results in a simplified language, devoid of all medical jargon. 99 Sort your medical records and help in storing these in an orderly fashion. 99 Co-ordinate crisis management and are available on a 24/7 platform. 99 Keep family members informed of the patient’s progress. Health care advocates are trained professionals who are familiar with the ropes of the health care system. When Neeti Chandra’s husband got diagnosed with bladder cancer, she was in such a state of shock, that she did not know whom to contact or where to seek help from. The doctor had made his depressing pronouncement but thanks to the consultation offered by a second oncologist recommended by a friend, three years later, Neeti’s husband is hale and hearty and thankfully still keeps his bladder. Fortunately, this friend had a nursing background. She also had the right contacts. She made appointments, accompanied the couple to the hospital; explained their lab results and stood by them throughout the difficult period. She would even type out medical notes after each appointment with the oncologist, monitor the patient’s progress and obtain regular updates from the doctor’s team. Smita and her husband would have been completely lost without her. That’s the kind of invaluable help a patientadvocate can render. 133
  • 116. 27. Facilitating A Second Opinion Patient-advocates have the right contacts to be able to arrange for a second or third medical opinion for the patient Y our doctor drops a bombshell. He tells you that you have a very serious ailment. The news strikes you like a bolt from the blue. You feel worried, anxious, defeated and confused, until, your spouse, who is also concerned about your health, suggests you don’t take the doctor’s word as final and seek a second opinion.You immediately feel relaxed. In this case, your spouse has acted as your advocate. One of my patients had an interesting experience to share, “I had a lump in my neck. It was causing some sinus issues. My doctor sent me for a CT scan and when the results came back, he told me that it was tumour and had to be removed right away. I felt shocked and unsure of what to do. I called my sister who suggested that I call her doctor, someone she had consulted all these years on all her medical issues and trusted completely. I sought an appointment with my sister’s doc. He asked to see my CT scan along with a few other lab reports. Armed with all those reports I landed at his office. He examined them and said what my doctor was calling a “tumour” was actually a benign growth and it had been there for at least one decade without changing in size or shape. He also said surgery was unnecessary. I felt massively relieved.” In this case, the patient’s sister played the advocacy role by providing timely advice. Once, at a patients’ group meet, an elderly man in a wheelchair raised his frail, trembling hand and asked, “How do I know whether my doctor is giving me the right advice?” He had a point.You can’t go by a single doctor’s advice about a serious condition - you need to have it cross-checked with another. After all, your time, money and life are at stake. Doctors, especially busy doctors, often rush into making a diagnostic pronouncement, without always dotting all the “i”s and crossing all the “t”s. 135
  • 117. Patient Advocacy Giving Voice to Patients A “patient advocate” can be a God send in such scenarios. He could be a spouse, a friend, a brother. Since a caregiver is generally a person on the “inside,” they are in a good position to know and understand the needs of a loved one. She may not have the necessary medical background, but her knowledge of the patient’s desires are equally important in making the best medical decisions. Banish the thought that a patient-advocate is an adversarial position. It doesn’t necessarily mean being a doubting Thomas, and rushing out and getting a second opinion on every matter, or logging on to the internet and conducting your own research and confronting a doctor with your findings. It doesn’t also imply slipping on the boxing gloves and declaring, “Hey, I am on the other side. So Beware!” What it means is that you are careful and wise. You don’t doubt others, but you do crosscheck important information. It means that even if you decide to do your own research or obtain a second opinion, you will speak about this to your doctor. A good doctor should appreciate your transparency and this will strengthen your relationship. Remember, effective patient advocates do not breed discontent; they build long-lasting relationships between patients and their doctors. Physicians are bound by a code of medical ethics that directs them to co-operate fully with their patients. If patients want to take a second or even a third opinion, doctors are legally bound to share your lab reports, prescriptions, and test results with other physicians.A doctor worth his salt would not feel insulted by such a suggestion. In fact, if your doctor discourages you from seeking another opinion, you have every reason to suspect his motives – and this should motivate you even more to seek another opinion. Generally, a patient-advocate will advise a second opinion when: You don’t have confidence in your doctor. Patients are less likely to follow a course of treatment when it’s prescribed by a doctor whom they don’t trust. You think there might be other treatment options. If your doctor tells you there is only one course of action, it should raise a red flag. Your doctor dismisses your concerns. You know your body best, and if your doctor doesn’t listen to you or take your symptoms seriously, go see someone else. You’re not getting better. Medicine is as much an art as a science, so a fresh viewpoint might make all the difference if you’re not recovering from an illness or surgery at the pace you expected. 136
  • 118. 27. Facilitating A Second Opinion You’re doctor recommends surgery. Anytime your doctor recommends an elective surgery to correct such problems as back pain, cataracts, gall stones or hernia, consider a second opinion. Your condition is uncommon. Some conditions are so rare that a physician may have seen only one or two such cases in her career. It’s worthwhile to consult a doctor at a major medical centre who has more experience with dealing with rare diseases. 137
  • 119. 28. Providing Access to Alternative Treatment Healthcare is never provided in a vacuum - it is always embedded in a cultural context H ave you ever wondered… 99 Why patients from one community often reject one form of medical treatment, but readily accept another? 99 Why some patients follow their doctor’s advice, while others do not? 99 Why some people prefer alternative healers for some form of illnesses (e.g. insomnia, indigestion etc.) but not for others (e.g. diabetes and high blood pressure)? 99 Why one ethnic group has a higher incidence of certain diseases (e.g. diabetes, hepatitis C etc.) compared with another? 99 Why some women abruptly change their diet patterns during pregnancy or breastfeeding in ways which may be harmful to the health of their child? 99 Why are some conditions such as obesity regarded as “diseases” in one 139 A Note on Safety and Effectiveness ff Select alternative medicine practitioners with care. Find out about their training and experience. ff Be aware that some dietary supplements may interact with medications or other supplements, causing potentially harmful effects, especially in pregnant women, nursing mothers, or children. ff Tell all your health care providers about any complementary and alternative practices you use. Give them a full picture of what you do to manage your health. This will help ensure coordinated and safe care.
  • 120. Patient Advocacy Giving Voice to Patients culture but not in another? The answer is because every culture has a different world view about the body and health - and we all unconsciously absorb this view and look at our health through this prism. Healthcare is never provided in a vacuum, it is always embedded in a cultural context. In a perfect world, both doctor and patient would share the same prism, leading to optimal health outcomes. However, it is when the doctor and patient have differing worldviews that a conflict arises. Dissatisfaction with the modern doctor’s obsession with technical minutiae and his desire to “treat” lab reports and scan images leads a number of patients (especially among the minorities and economically weaker sections) to seek alternative treatment options. Not only do they find these more cost-effective, they are also more aligned with their personal perspective on health. This has led to the increasing popularity of alternate systems of medical care. Western medicine doctors are often not What Should You Look For in An comfortable with these alternative options Alternative Care Provider? because they do not understand them. They feel that these have not been adequately studied; that ff What will the treatment involve? they have not been subjected to controlled clinical ff The frequency and number of trials to prove their efficacy; that their scientific visits that the treatment is likely basis is unproven; and that a lot of alternative to require? medicine practitioners are quacks who prey on the patient’s gullibility. This often leads to conflict, ff The cost of the treatment? where the patient seeks an alternative medicine ff The results that can be expected? doctor, without informing his doctor that he is ff The risks involved? doing so. This kind of hide and seek confuses the patient and his doctor – and leads to poor health outcomes. It’s far better that the doctor should seek the help of a patient-advocate, who can then refer the patient to reliable providers of alternative treatments and complementary medicine. Using integrative medicine, advocates help patients combine the best of both the worlds – Western Allopathy with homeopathy or Ayurveda, depending upon the patient’s preferences. Typically, an integrative approach is based on the following principles: 99 Our body has the ability to cure itself 99 Healing practices must be individualized, because every patient is unique 99 People are responsible for their own health. Patient-advocates can only guide them in choosing a set of therapies that might work the best for them 99 Healing must aim for a balancing of mind, body and spirit 140
  • 121. 28. Providing Access to Alternative Treatment Let me illustrate this point with the following example: A 45-year-old patient was once diagnosed with a cyst on the left side of his neck that biopsy showed was cancer. The patient rejected the diagnosis and over time the cyst grew in size and eventually turned into an inoperable tumour that had spread to his jugular vein. The oncologist knew that chemotherapy and radiation offered the only ray of hope, but since the patient was still in a state of denial, the doctor arranged for a consultation with a patientadvocate. Along with accompanying him for his chemotherapy and radiotherapy sessions, she also arranged meetings with a yoga therapist; and had the patient attend meditation classes. The combination of therapies worked. Everybody watched as a robust person, who had got reduced to a skeleton and could no longer swallow because the radiation had destroyed his oesophagus, started regaining his health bit by bit. Then the day dawned when this patient tested negative – the cancer had disappeared. Earlier, he had been given eight months to live. It has been over three years now and this patient is still alive and kicking and lives his life to the fullest. Integrative medicine has many streams, including: Osteopathic Medicine: Osteopaths believe in the healing power of the body and in rebuilding its strength. Functional Medicine: One of its basic principles is of biochemical individuality, i.e. treatments should vary based on genetic and environmental factors. Traditional Chinese Medicine (TCM): includes approaches such as acupuncture, and ancient herbal therapies. Ayurvedic Medicine: combines herbal therapy with strict dietary recommendations. Naturopathic Medicine: Naturopathic doctors (NDs) combine diet, exercise and lifestyle changes in their treatment approach.. He found his calling Mahesh didn’t intend to be a patient-advocate. But when an 85-year-old friend wasn’t getting the care he deserved at the emergency ward of a local hospital, he couldn’t just stand by and watch. He took stock of the situation and managed to galvanise the medical staff into action. That day, Mahesh found his calling. He now enjoys helping patients get the best medical care. Homeopathic Medicine: This therapeutic method was developed by the German physician Samuel Christian Hahnemann at the end of the 18th century. 141
  • 122. Patient Advocacy Giving Voice to Patients QUIZ TIME: Is Your Patient Ready For Alternate Care? As a patient-advocate, before you offer alternate therapy for the patient, ask her … 99 What do you hope to gain out of this therapy? 99 Would you like to talk to a patient about their experiences with these therapies? 99 Would you like to do more research more about this therapy? 99 Are you aware of the side effects of this therapy? 99 Will this treatment interfere with the other treatments that you are taking? A patient who responds satisfactorily to these questions makes for an ideal candidate for alternate therapies. 142
  • 123. SECTION 7 THE PATIENTADVOCATE AS A PROFESSIONAL
  • 124. 29. Becoming a Professional Patient-Advocate Private, professional patient advocacy is a new, non-certified practice T here is no diploma or degree programme offered in India to get certified as a patientadvocate. The profession is so young that there is no accrediting agency or licensing body that has developed standards for certifying the skills of patient advocates. Even in other parts of the world, there are just a few “certificate” courses but no universally agreed-upon standards for certification. Further, since institutes offer different curricula, have different eligibility criteria for admission and follow different approaches to programme delivery (online or offline), the quality of their student output varies accordingly. For example, while Sarah Lawrence College (http://www.slc.edu/) in New York offers a Master’s level programme in health advocacy, Cleveland State University (http://www.csuohio.edu/) runs an online programme on patient advocacy, and both are in demand. How to choose the right programme? Begin with a need gap analysis – figure out what is needed in your skill-set to best serve your clients and then scout for a school or a programme that most effectively addresses that knowledge gap. Next, determine your budget. How much can you spend? The key is to weigh value against possibilities. Figure out how much you can spend by determining how easily you’ll be able to pay yourself back. If you are already employed somewhere, taking a long sabbatical to finish a one-year programme may not be practical. In that case, hunt for an online programme.You’ll find plenty of courses that answer your specific training needs. Maybe a short series of weekend courses would give you a better return on your investment. 145 Training Needed To be hired as a hospital patient advocate, you’ll need the following qualifications: usually an Associates or Bachelors degree, and often a Masters degree in nursing, psychology, humanities, social services, education, human relations, communication or a related field. Many hospital patient advocates begin as social workers or in clinical positions.
  • 125. Patient Advocacy Giving Voice to Patients If your means are limited, find out about scholarships, equated monthly installments (EMI) schemes, discounts and other funding opportunities that would spread out your outflow over a period of time. Who makes a good patient advocate? Generally, anyone with empathy makes for a good advocate. Advocates who assist elderly patients and children need plenty of patience. Those who prefer to work with insurance and billing clerks need to understand how these departments work and they must be good at number-crunching. Good training will teach you how to… 99 Improve patient and family experience in a hospital 99 Engage patients and families in the patient’s care 99 Promote patient-and family-centered care 99 Reduce medical errors by educating and empowering patients and their families about the care plan 99 Give voice to healthcare consumers and their families in a complex healthcare scenario 99 Reduce fragmentation and duplication of work 99 Assist in cost reduction 99 Reduce frustration and restore patient trust in the deteriorating healthcare system The Professional Patient Advocate Institute New York-Based Professional Patient Advocate Institute offers high-level, in-depth training. The Institute serves independent patient advocates, inhospital patient advocates, employer groups and others interested in ensuring effective, consumer-driven healthcare. (For more details log on to www. patientadvocatetraining.com/) 99 Practice a new model of care coordination Nurses, lawyers, medical assistants, medical billing clerks, retired doctors and counselors have the right employment history and experience to be ideal candidates for this job. Some patient advocates also specialise in health care reform, public education, and legislative matters. Hospitals also provide in-house training to new recruits which is important, as patientadvocates need to be knowledgeable about the systems and processes of their employer. 146
  • 126. 29. Becoming a Professional Patient-Advocate Patient-advocates need to wear many hats and master many skills. Be professional If you don’t exemplify professionalism, how will you be able to expect it of others? Make sure you have a website that your patients can log onto for all their health information needs. The design, messaging and layout of your site should be extremely simple and accessible to lay patients. The navigation should be smooth and the design must be uncluttered. Be accessible As smart phones are becoming more popular, it’s essential to have a mobile version of your website. Encourage patients to call you from their smart phones to seek directions to your office, schedule appointments or find out about your services. Be knowledgeable Patient advocates for the poor, downtrodden and underprivileged An auto rickshaw driver got admitted to the emergency ward of a government hospital after he passed out on the road. After running all the tests, the doctors concluded that the patient hadn’t taken his blood pressure medication on time. The hospital got a patient-advocate to explain the medication schedule to the auto driver in Marathi, his local language. When he was done, the advocate asked the patient to write down the instruction in his own handwriting, thus ensuring he would retain the information provided ! Busy doctors just do not have the time to hand hold their patients like patient advocates can. One of the best ways to secure the trust and respect of your patients is to demonstrate to them that you are an expert in your field. Display your loyal patients’ testimonials on your website. Maintain a patient library or begin to run a blog so that patients come to you looking for help, instead of Googling for information. Build trust and loyalty A happy patient should be treasured. She will be happy to sing your praises to others - and word of mouth marketing is worth its weight in gold. Successful patient-advocates wield a lot of clout. If you do well, hospitals will roll out a red carpet for you and doctors will treat you (and your patients) as VIPs because you are a good source of patient referrals. Be able to communicate Patient advocates serve as liaisons between the patient and his family and doctors, nurses and health insurance companies. You need to engage with a wide spectrum of people. You have 147
  • 127. Patient Advocacy Giving Voice to Patients to be an active listener and be able to present your patients’ concerns to the doctors in a manner that gives them access to the right care. Be well organised Patient-advocates must be good record-keepers. You have to fix appointments and follow-up with doctors, as well as maintain and update patient records in a timely fashion. Be able to solve problems A patient advocate’s job is challenging, but if you like tackling problems, the role can be extremely satisfying.You need research skills and analytical abilities to master problem-solving techniques, and should be able to sift through loads of information and keep yourself updated all the time, much like investigative journalists. Be patient You will need tons of patience, if you want to learn to protect yourself from burn-out. Questions you should ask your trainer Before you join an institute or enrol for a programme, it might be a good idea to ask your trainer: 99 What is the career path for patient advocates? 99 How long do they typically stay in their jobs? 99 What kind of training and educational programmes do you offer? 99 Are these courses certified? 99 How much would the programme cost and what would be its duration? 99 What do you cover in your content? Do you follow a case-study approach? 99 What are the most challenging aspects of patient advocacy? 99 What are the most engaging aspects of patient advocacy? Since it’s a long-term investment that you are making in yourself, choose your programme with care, and after doing in-depth research on the available options. The truth is that the practice of patient advocacy, just like the practise of medicine, is complicated; it is an art as well as a science. A good patient advocate is learning all the time. A patient advocate masters her profession by investing years of training and experience, so that 148
  • 128. 29. Becoming a Professional Patient-Advocate she can identify a problem; make the right decision; and react within a few minutes, till this ability becomes nearly instinctual. When navigating the healthcare system, time can be critical, hence the need for humility, experience and expertise. As with any other profession, patient advocates need to follow a Code of Ethics.The following principles are very useful as a guideline. Principle 1 Objectivity: The role of the Professional Patient Advocate is to represent the patient and family first and foremost, regardless of who employs them. Principle 2 Scope of Practice: The Professional Patient Advocate must work within her scope of practice. Other members of the healthcare team should be utilized as needed to meet the demands of her patient. Principle 3 Full disclosure of services, fees and length of time services will be performed: The Professional Patient Advocate must provide to the patient and his family a document that fully discloses her role and function, as well as the fees and services the patient advocate will perform. Principle 4 Confidentiality: A Professional Patient Advocate should obtain a consent that authorizes the patient advocate to speak and act on behalf of the patient. Principle 5 Promoting Autonomy: The Professional Patient Advocate’s role is to educate and empower the patient to make informed decisions based on his individual wishes and in keeping with his cultural, spiritual, religious and ethical beliefs. Principle 6 Accountability: The Professional Patient Advocate is held accountable for the work done on behalf of her patients. Principle 7 Continuous Learning: The Professional Patient Advocate commits to continuous learning in order to keep up to date on clinical matters and with trends and advances that impact patient care. 149
  • 129. 30. Setting Up Shop and Expanding Your Business “Patient advocacy” is an up-and-coming career T he Entrepreneur Magazine and US News World Report have identified patient advocacy as a New Age career. Some of the services that are offered under this broad platform are: 99 Medical / Navigational Assistance Patient Advocates in Geriatrics 99 Insurance Assistance 99 Home Health Assistance 99 Elder or Geriatric Assistance Before you start your independent practice Ready to jump on the bandwagon? Good. Your first requirement is a business plan. This serves as your road map to a successful advocacy practice. The plan must spell out your portfolio of services, financial and non-financial resources, your marketing strategy and your prospects for growth. It need not be a lengthy document, but it does need to have all the essential components in place. Further, you need to determine your business structure. Will you go it alone A professional nurse by the name of Maria Fernandez is assigned a patient, an elderly woman, Sunita who has sustained a fractured humerus and has her right arm in a sling. Because of her advanced age, her orthopedic surgeon is waiting for the physician to ensure she will be able to tolerate the stress of surgery. This worries Sunita, who is wondering why she is being ignored and neglected. Maria ropes in a patient-advocate, another patient of Sunita’s age, who to Maria’s relief is able to strike an instant rapport with Sunita and explains to her that the reason for the delay is that her doctors want her to heal well. The outcome of this advocacy is that Sunita’s surgery goes smoothly as scheduled on the third day of her hospital stay, and she is ready to be discharged on the fourth day. 151
  • 130. Patient Advocacy Giving Voice to Patients and be a proprietorship or take on a knowledgeable business associate and register yourself as a partnership firm? You will need to apply for a PAN number in order to be able to file your income tax returns. Since you are considered to be a service provider, you also need a service tax registration number. A marketing plan will help you define your target clients so you can plan how to reach out to them. Your most important marketing tool is through word of mouth. Network actively with doctors, marketing executives of hospitals, and patient communities (online and real-world). Locate other advocates in your catchment area. Study your competition and find out what services are available and at what price.These days, big hospitals and insurance companies also outsource work to external “patient advocates” or “case managers.” See if that opportunity exists in your area.You may also provide allied services, such as fund-raising, patient education and running outreach programmes to these clients. The key to building a sound practice is earning your patients’ goodwill. Learn to pamper them. Study their needs and wants and then launch services tailor-made around those requirements. Understanding who you are targeting and finding creative ways of satisfying your customers is critically important for any service-oriented business. You can find more resources at the Society for Healthcare Consumer Advocacy website at www.shca-aha.org/ Learning the Ropes of the Trade Those who work for hospitals and other clinical facilities get to discover that dealing with angry and illiterate patients is no child’s play.You may feel frustrated and foiled in your attempts at improving a poor quality hospital service, if the management turns a deaf ear to your suggestions. Your employer may want you to cut down on your advocacy efforts if he finds your recommendations are too expensive for them to implement. Hospital staff may initially be suspicious of your motives because they don’t understand the role of an advocate.You have to explain to them that your presence at the hospital will allow the patients to have a good experience of their hospital stay. By putting patients first, you are helping to strengthen the hospital brand. There will be stress-filled days, but when you get to lessen someone’s pain and see a smile on a stranger’s face, you will be glad you chose this profession. The emotional income that patient advocacy brings is highly rewarding. 152
  • 131. 31. How to Market Your Patient Advocacy Business The best way to reach out is to use online media, but you also need to rely on more traditional methods, such as word-of-mouth publicity, to gain patient goodwill W hen a friend’s mother was put on the ventilator in the ICU of a leading hospital, where she had to fight for her life after developing Acute Respiratory Distress Syndrome (ARDS) caused by a simple gall bladder removal surgery gone awry, my friend had trouble finding a patient-advocate who would answer her basic questions about her mother’s treatment protocol, insurance coverage and alternative treatment options. This friend lost her mother after a heartbreaking protracted battle, which broke her heart and her soul. I wish she had had the foresight to seek the services of a professional patientadvocate, who would have guided her through the hospital maze and the litigation process that she is presently tangled in. Had she known that such advocacy services exist, I am sure she would have wasted no time in hiring a patient-advocate and secured timely help for her mother. Do you feel marketing is not for health advocates? Think again. Most patients and doctors don’t even know this service exists and they are clueless that a patient-advocate can provide just the right kind of help during a health crisis. If you’re an independent patient advocate, trying to run your practice on a shoe-string budget, you need to advertise to create awareness about your business, which implies that you need to do a lot of word-of-mouth publicity and social media marketing. To market effectively, you need to : Ensure patient satisfaction: Provide quality service and treat clients with respect. In this profession, it’s really important to come across as compassionate and understanding. 153
  • 132. Patient Advocacy Giving Voice to Patients Network: Attend hospital events, medical trade shows and local CME meetings for doctors. That’s where you can talk to doctors, and educate them about your unique services and skill sets. Most busy doctors would be happy to refer their patients to you, if you can prove that you can add value. Social media: This is the cheapest mode of marketing for a small-scale practice. Create a Facebook page and set-up your Twitter and LinkedIn accounts. It won’t cost you a dime and can provide rich returns if you put in the hard work needed. Most patients are now online these days – you need to find out where they hangout, and think about how you can help them access better care. Expand your network: Reconnect with former patients and their families. Make it a point to check up on your ex-patients, even after they have got better. For example, you can send them an anniversary email on the date of their hospital discharge, congratulating them on their good health. You can also send them a regular ezine, educating them about their rights and what they can do to take better care of themselves.They may have friends, co-workers or acquaintances who may need your services, so make it easy for your clients to refer others to you.You may also want to offer a free consultation service, which allows you to meet with confused, distraught or unhappy patients.You can show them how they can benefit from your timely advice on their medical treatment, hospital costs and insurance cover. Don’t forget to ask for references and testimonials: Get your clients to rate your service on a scale of 1 to 10 and proactively ask for feedback on your services. This way, not only would you be able to get an honest assessment of your skills, this may give you another opportunity to change their perception of a negative encounter. Record all good and bad patient experiences as you can learn from both. Use all these testimonials on your company brochure, blog or website. Offer to give talks on patient safety and patient rights. Set yourself up as an authority on these subjects. Let people know what business you are in.Write opinion pieces in newspapers, start a newsletter service, run a chain e-mail campaign, so you remain “top of mind” when people need medical help. Grab every opportunity to speak on patient empowerment at local colleges and universities, Rotary Clubs, healthcare meetings and other venues. Quote your patients in your speeches and columns.They’ll feel flattered and will be happy to endorse your services. 154
  • 133. 31. How to Market Your Patient Advocacy Business Be a technology superstar When you are setting-up your independent practice, ensure that you have a website that is content rich and is frequently updated. Since patient advocacy is such a new field, you will have to spend a lot of time on educating people as to how you can help them get better medical care – and why it’s worth their while employing you ! A simple value add service you can provide is a portal where you upload your patient’s medical records on an ongoing basis, so they can view their current medications and lab results. If you adopt these modern tools, your patients will be confident that you are providing them with a cost effective service. 155
  • 134. 32. Summing Up W hen you are ill, you are vulnerable, and you need some to stand up for you. While usually this person is your family doctor, his role is usually limited to providing you with the right medical treatment. Unfortunately, most of us don’t even have a family doctor today. This is where patient advocates come in. This is a very broad-based title that encompasses a bouquet of services for the patients. While most advocacy in India is done by friends and relatives, there are several independent professionals and organisations in the US who provide patient advocacy services for a fee. Many hospitals in the US now have full-time patient advocates. These staff members act as representatives for patients; and help to resolve grievances and improve communication with the medical staff. They are the equivalent of an ombudsman, and act as a bridge between patients and hospital staff. In India, the word advocate is synonymous with a lawyer, which means it usually carries a negative connotation. However, in order to become a health advocate, you do not need to a get a LLB degree. Remember that the word advocacy means someone who champions a cause; and an advocate is someone who fights for your cause. It’s helpful to have someone at your bedside in the hospital to make sure overworked nurses notice if your vital signs are going downhill or to ensure that the right medications are given at the right time. It’s good to have someone who can get on the Web and research your disease. And it’s important to have someone to take notes during doctor visits and ask the questions you forget. If someone is ill, how can you become a patient advocate for that person? This is actually something we do informally for friends and family members. Trisha Torrey has as excellent website at www.everypatientsadvocate.com/index.htm which will show you how to do a better job. Becoming informed and working as a partner with health care providers helps to insure that the best possible treatment outcome will be achieved. As an advocate, you will need to wear multiple hats. You need to learn to network with doctors; to coordinate appointments; 157
  • 135. Patient Advocacy Giving Voice to Patients to get specialists to talk to each other; to organise a hospital bed; arrange for blood; buy medicines; fill in medical forms and insurance paperwork; and to act as a caregiver and provide moral and emotional support.This can be a tall order and may sometimes be a thankless job – but its well worth it, because your efforts can spell the difference between life and death. And all these skills can prove to be invaluable when you fall ill yourself. A “patient advocate” is a critical component in the healthcare delivery chain and a caregiver is in the best position to know and understand the needs of a loved one. Do you feel you are underqualified to take on this task? Remember, you already have all the skills you need to be a patient advocate. It does not require specialised medical training – all it takes are basic communication skills, the courage to do things differently and the willingness to think through a problem logically. The field of Patient Advocacy is booming due to four trends in the healthcare industry: 99 Consumers want assistance in navigating the healthcare system so they can be active participants in their own health. 99 The healthcare industry is complex, fragmented and not patient- or family-centered. That makes it difficult for consumers to ensure they’re getting the care they want. Having an advocate empowers patients to understand and demand the plan of care that they need. 99 Due to escalating healthcare costs, consumers have become more savvy shoppers, who want to ensure that they will get the healthcare they need in the most efficient and cost-effective manner possible. 99 Trust in healthcare has eroded to the point that consumers are looking for trusted professionals for assistance in navigating the complicated healthcare landscape. Keep in mind that being a patient advocate is not an adversarial position. As mentioned elsewhere in this book, it doesn’t necessarily mean rushing out and getting a second opinion on every matter, or conducting your own research and confronting a healthcare professional with your findings. This doesn’t mean you shouldn’t seek second opinions, or do your own research. On the contrary, this is often a wise approach. If you do decide to do your own research or obtain a second opinion, please speak with your doctor about it. Effective patient advocates do not breed discontent – they build and strengthen relationships. 158
  • 136. 32. Summing Up What are some of the common mistakes a patient advocate may make? 1.  Fail to get consent to act as a patient advocate. 2.  Fail to recognise the patient’s preferences or personal communication style. 3.  Fail to recognise that behind every medical goal is a personal goal. 4.  Plant seeds of mistrust between the patient and the doctor. This book will help you avoid some of those mistakes. Finally, you need not be an advocate just for a friend or family member.You can reach out and touch many patients, if you are willing to do so.Thus, if you suffer from a particular illness, you can setup a support group to raise funds and help others; or create a website to generate more awareness about the illness. Many people also find volunteering in a hospital allows you to help those less fortunate than you – and helping others is a great way of helping yourself. It’s emotionally gratifying work that you will never regret giving your time, training and energy to. 159
  • 137. 33. Additional Resources Designation of Patient Advocate Form To my family, doctors, and all concerned with my care. These instructions express my wishes about my medical care. Appointment of Patient Advocate I, __________________________________________________________________ Appoint the following person to be my Patient Advocate: Patient Advocate’s Name ______________________________________________ Address ____________________________________________________________ Instructions for Care 1. General Instructions: My Patient Advocate shall have the authority to make all decisions and to take all actions regarding my care, custody, and medical treatment, including but not limited to the following: a. Have access to, obtain copies of and authorise release of my medical, mental health and other personal information. b. Employ and discharge physicians, nurses, therapists, any other health care providers,, and arrange to pay them reasonable compensation. c. Consent to, refuse or withdraw for me any medical care; diagnostic, surgical, or therapeutic procedure; or other treatment of any type or nature, including life-sustaining treatments. 161
  • 138. Patient Advocacy Giving Voice to Patients 2. Specific Instructions My Patient Advocate is to be guided in making medical decisions for me by what I have told him/her about my personal preferences regarding my care. Some of my preferences are recorded below and on the following pages. A. Specific Instructions Regarding Care I DO want. ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ _________________________________ B. Specific Instructions Regarding Care I DO NOT want ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ _________________________________ C. Specific Instructions Regarding Life-Sustaining Treatment ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ _________________________________ D. Specific Instructions Regarding Anatomical Gifts My Patient Advocate has the authority, upon or immediately before my death, to make an anatomical gift of all or a part of my body for transplantation needed by another individual; for medical education and research; for anatomical study; or for any other purpose permitted by law. This authority granted to my Patient Advocate shall remain following my death. 162
  • 139. 33. Additional Resources E. Any Other Specific Instructions ___________________________________________________________________ I am providing these instructions of my free will. I have not been required to give them in order to receive or have care withheld or withdrawn. I am of sound mind. Signature___________________________________ Date__________________________ Name ______________________________________________________________ Address_____________________________________________________________________ Template Résumé when applying for a job as a Patient Advocate 99 Name 99 Address 99 Telephone Number 99 Cell Phone Number 99 E-mail 99 Web Site JOB TITLE SOUGHT: Patient-Advocate JOB OBJECTIVE: Job Accomplishments by Organization: 99 Job Title 99 Name of Organization 99 Address 99 Telephone Number 99 Supervisor’s Job Title and Name 99 Dates of Employment 99 Salary 163
  • 140. Patient Advocacy Giving Voice to Patients Career Accomplishments/ Responsibilities: Education: 99 School 99 Degree/Certificate 99 Extracurricular Activities 99 Continuing Education Registrations, Licenses, Certifications: Special Knowledge, Abilities, Skills: Professional Organisations: Publications: Awards/Honours: References: 1. 2. 3. 164
  • 141. FREQUENTLY ASKED QUESTIONS ABOUT PATIENT-ADVOCATES Who is a patient advocate? Someone to whom you assign decision-making powers to act on your behalf in a medical scenario. When do I need a patient advocate? When you are unable to participate in medical treatment decisions yourself. Until that time, you make your own decisions directly. How might I become unable to participate in medical or mental health decisions? You might have a temporary loss of ability to make or communicate decisions if, for example, you had a stroke or were knocked unconscious in a car accident.You might suffer permanent loss through a degenerative condition, such as dementia. You might become unable to make mental health decisions if a condition such as severe depression or schizophrenia affected your mood or thought process. Who determines I am no longer able to participate in these decisions? The doctor responsible for your care (along with another independent doctor who examines you) will make that determination in the case of medical decisions. Your family members can also seek the help of a patient-advocate, if they feel vulnerable and find it difficult to negotiate the complex processes at the hospital you are admitted in. What powers can I assign to a patient advocate? You can give a patient advocate power to make those personal care decisions you normally make for yourself. For example, you can give your patient advocate power to consent to or refuse medical treatment for you; arrange for mental health treatment, home health care or 165
  • 142. Patient Advocacy Giving Voice to Patients adult day care; or admit you to a hospital, nursing home or home for the aged. You can also authorize your patient advocate to make a gift of your organs or body, to be effective upon your death. Will my patient advocate have power to handle my financial affairs? You can give your patient advocate power to arrange for medical and personal care services, and to pay for those services using your funds. Your patient advocate will not have general power to handle all your property and finances. Can I give my patient advocate the right to withhold or withdraw treatment that would allow me to die? Yes, but you must express in a clear and convincing manner that your patient advocate is authorised to make such decisions, and you must acknowledge these decisions could or would allow your death. What if I don’t express any specific wishes concerning medical treatment? Your patient advocate must then make decisions about your medical care in what he believes is in your best interests. Will a hospital allow my patient advocate to review my records? Yes. A patient has the right to inspect and copy his hospital records.Your patient advocate has the same right you have, once you have granted this to him, and are unable to participate in treatment decisions. Whom can I appoint as patient advocate? Any person age 18 or older is eligible; you can appoint your spouse, an adult child, a friend or other individual.You should choose someone you trust, who can handle the responsibility, and who is willing to serve. Can I appoint a second person to serve as patient advocate in case the first person is unable to serve? Yes. It is a good idea to do so. What does a patient advocate need to do before acting in my behalf? Before the patient advocate can act, he or she must sign an acceptance. This can be done at the time you complete the document. 166
  • 143. FREQUENTLY ASKED QUESTIONS ABOUT PATIENT-ADVOCATES Is there a required form for the document? No. You may choose to use the sample form that we have given in this book, after making suitable changes in accordance with your specific medical needs. Once I sign, can I later change my mind? Yes.You may want to name a different patient advocate or alter the expression of your wishes. So long as you are of sound mind, you can sign a new document and then destroy the old one. Regardless of your physical or mental condition, you can revoke or cancel the document if it does not reflect your current wishes. Also, any spoken wish to have a specific life-extending treatment provided must be honoured by a patient advocate, even if the wish contradicts a written directive. Can my patient advocate refuse to act in my behalf? Yes. A patient advocate can revoke his acceptance at any time. If so, your named successor would become patient advocate. What if there is a dispute when my patient advocate is making decisions for me? If an interested person disputes whether the patient advocate is acting in your best interests, or has the authority to act in your behalf, the interested person may petition the local court to resolve the dispute. What if I regain the ability to participate in medical decisions? You can suspend the powers of your patient advocate during the time you are able to participate in decisions. What if I have no one to appoint as a patient advocate? You can write an advance health care directive (also known as a living will), which is a set of written instructions you give that specifies what actions should be taken for your health if you are no longer able to make decisions due to illness or incapacity. You can see a model of a living will at http://www.agingwithdignity.org/. You can also create a durable power of attorney for health care, where you empower an agent (known as your health care proxy) to make health care decisions for you. 167