1. White Paper Patient Advocacy: A STARR Approach to Owning Your Own Healthcare Vicki Whiting, Ph.D. Gore School of Business Westminster College 1840 South 1300 East Salt Lake City, UT 84105 (435) 640-‐2286 (801) 484-‐3767 -‐ fax firstname.lastname@example.org Shelley Braun, Ph.D. Associate Director Utah Health Policy Project Adjunct Professor Westminster College 1840 South 1300 East Salt Lake City, UT 84105 (435) 640-‐2286 (801) 484-‐3767 -‐ fax
2. More and more, people who are ill, along with their families, friends, and caretakers, find themselves lost in a chaotic swirl of medical procedures, practitioners, and paperwork. With an increased complexity of and reliance on technology by health care practitioners, many patients find themselves on the margin of medical encounters instead of at the center. This is particularly problematic for those individuals for whom the mainstream evidence-‐based treatments fail. While evidence based protocols are vital to improving patient care, they are based on the best evidence for the most people, that is, they work at the population level; they absolutely do not serve the outliers. A danger of such protocols is that practitioners buy into the idea that they should work, and are often at a loss to offer an explanation, no less an alternative when they fail. The resulting frustration can result in blaming the patient for the failure of the treatment. Applying the same failed treatment over and over again, as was the experience of one young woman (interviewed by Braun), is not only harmful but demoralizing. Patients ought to be at the center, not the margins, of care. To address the challenge to conventional medical practice to bring the outlier patient into the center of care, we propose the following SSTAR approach to coordinated, collaborative care, centered on committed engagement by patients and their families, friends, and caretakers. SELECT the right medical team RALLY SHAPE support the conversation ASK TAKE CONTROL for help of your information
3. Select The Right Medical Team Identify a collaborative and cooperative team of medical practitioners who listen. This team is anchored by a local “willing doctor” who is able to listen to the patient, and his or her family, friends, and care-‐takers. This doctor will take a new look at the whole picture of the illness, of the patient, of the person who is sick, as many times as it takes to find the right diagnosis and the right treatment while minimizing unnecessary tests, procedures, medications, and pain. The medical team, made up of a combination of practitioner levels (MD, NP, PA, RN, OT, PT, etc), will collaborate with the patient, and coordinate their communication and care among team members. Whiting has created an integrated team for her son, Kevin. This group of practitioners collaborates with Kevin’s self-‐reporting (see below) and each other to integrate care. For example, before changing a medication .... 2/12/12 12:26 PM Comment : Need Vicki’s story Shape the Conversation Speak up for yourself or find someone who can speak for you. Our clinical medical system is a powerful conglomeration of knowledge, expertise, and resources—one in which the person of the patient can easily be lost, pushed to the margin of the medical encounter. It is a daunting task to speak truth to power under the best of circumstances, yet imperative to the diagnosis and therapeutic management and/or resolution of difficult, chronic, and outlier conditions. Particularly important when a patient doesn’t fit into the standard of illness etiology and medical practitioners are at a loss for explanation. Braun experienced this herself when being treated for an ulcerated cornea. She found herself being asked the same questions over and over again about her personal contact lens care at each of 3 visits, and felt blamed for her condition although her care regime of 20+ years had never before resulted in any eye issues at all. Finally, exasperated, she replied to the third doctor’s repeat question about contact lens care: “I am not willing to have that conversation with you, but I will have a conversation about how to reduce the risk for repeat corneal ulcers.” This simple assertion and re-‐direction of the conversation yielded important information about choices she could make to ensure eye health in the future, and reminded the doctor that she was a person, not an eyeball. Take Control of Your Information Take ownership of your medical information. Self track your quality of life index daily and keep a copy of your medical record; it belongs to you. Patients have a unique contribution to make to their care: the experience of being sick. Traditionally in clinical medicine, the patient’s experience of his or her illness and subsequent treatments is relegated to the (inferior) category of subjective information. In the hierarchy of clinical diagnostic information, objective input (test results, images) is considered more reliable, thus more valuable, than subjective (a patient’s experience)—despite the fact that early career medical students spend a lot of time learning to take information from their patients in the physical exam. Indeed, at a recent Global Health
4. conference, after one of the authors (Braun) was taken to task by a well-‐established late career doctor for proposing that this objective-‐subjective hierarchy is deeply entrenched in our medical system today, a medical student countered with the statement “yes we learn it but it quickly gets pushed down into being unimportant compared to all the other diagnostic tools we are learning.” We propose that patients “self-‐track” a few quality of life measures (following Whiting’s appetite, pain, energy—APE—index used during the long experience of her son Kevin’s illness), a few times a day on a simple 5 point scale. Items important to track will vary from patient to patient, and might include sleep, pain, appetite, energy, drudgery of daily therapeutic routine, support. This turns a patient’s subjective measures into a relative quantitative measure, which the health care providers can include and correlate with specific treatments and medications. Today’s medical record is comprehensive, yet fragmented. Practitioners are hard pressed to keep in sight the topography of a patient’s illness. It is that big picture, the 30,000 ft view that is vital to the process of seeing patterns and fitting the often complex assortment of puzzle pieces together in the course of a patient’s diagnosis and treatment. We propose that patients create a one-‐page timeline, or history, of their illness, recording seminal events and treatments (with a simple “worked” or “didn’t work” indicator) in chronological order. This document can be taped to the front of the medical record and easily referred to as a quick guide for medical practitioners. In addition, patients may want to create and carry a more comprehensive timeline including more detail about specific treatments, dosages, and their efficacy, including outcome. Ask For Help Hire a healthcare advocate, identify a Center of Excellence for your condition, and research your illness. It is virtually impossible to advocate for and defend oneself in the best of circumstances, no less, when sick, in pain, worried for life, and concerned about the not-‐sick parts of life like keeping a job, holding a family together, and keeping one’s finances intact. A local healthcare advocate can be the point person for the medical team and the liaison between the patient and the medical system. It is the advocate’s first priority to fight for the well-‐being of the patient. A Center of Excellence looks for new and more effective diagnostic tools and treatments for 2/12/12 12:42 PMthose inevitable individuals for whom the mainstream evidence-‐based treatments fail. Comment : I need to rework this While evidence based protocols are vital to improving patient care, they are based on the section I poached this for the beginning best evidence for the most people, that is, they work at the population level; they absolutely do not serve the outliers. A danger of such protocols is that practitioners buy into the idea that they should work, and are often at a loss to offer an explanation, no less an alternative when they fail. The resulting frustration can result in blaming the patient for the failure of the treatment. Applying the same failed treatment over and over again, as was the experience of one young woman interviewed by Braun, is not only harmful, but demoralizing.
5. Rally Support Enlist the help of your family and friends to track and ensure your quality of life. Everyone who cares about the patient can play a role in lending support. Friends and family can visit, can provide respite to caretakers, and can keep a hawk’s eye on care in hospital. The genius of surrounding the patient with people who care, is that they can dedicate themselves to the effective care and compassionate treatment of one individual while the medical practitioners must care for many. In addition, this support team can keep at the forefront the day-‐to-‐day quality of life issues so often lost in clinical care. Our proposed 5-‐pronged SSTAR approach surrounds the individual with a “circle of defenders, made up of a team of individuals who will coordinate and advocate for him or her. This pulls the patient as person back to the center of care. SELECT the right medical team 2/12/12 Stick_Figure_by_101stickﬁgure101.jpg (488×527) RALLY SHAPE support the conversation fc07.deviantart.net/fs70/f/2010/087/c/4/Stick_Figure_by_101stickﬁgure101.jpg 1/1 ASK TAKE CONTROL for help of your information