Patient Advocacy - Giving Voice to the Patient


Published on

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 !

Published in: Health & Medicine, Business
No Downloads
Total views
On SlideShare
From Embeds
Number of Embeds
Embeds 0
No embeds

No notes for slide

Patient Advocacy - Giving Voice to the Patient

  1. 1. Patient Advocacy Giving Voice to Patients Dr Aniruddha Malpani
  2. 2. All rights reserved. Patient Advocacy - Giving Voice to Patients Copyright - Dr Aniruddha Malpani Price: Rs 300 HELP - Health Education Library for People Ashish Tardeo Bombay 400 034 India
  3. 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. 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. 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. 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 He has authored 5 books – How to Get the Best Medical Care (; 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 ( He is an angel investor in Plus91 ( a company which provides websites for doctors; and PEAS (, 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@ Dhivya Ramasamy, is a Faculty Associate at LAICO, Aravind Eye Care System (www. 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 ( and consultant to a host of domestic and overseas clients. She can be reached at sachdev.
  7. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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 - 17
  18. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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: 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. 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. 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
  36. 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. 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. 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. 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. 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. 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. 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. 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. 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: 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. 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. 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. 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. 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. 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. 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. 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