People talk a lot about autonomy in medicine--the patient's freedom to choose how much, and what kind of, medical care he or she will receive. Autonomy is a fundamental principle of medical ethics, and philosophers and legal scholars write about the central premises of choice and informed consent. The recognition of patient autonomy means that the "power of the physician" should not dominate patients' decisions about their treatment, and information should be freely provided to patients. Fully informed patients are free to choose.
Often, though, the right choices are not clear; the information is complicated and can be interpreted differently depending upon one's values and point of view. People often face complicated medical decisions when they grow older and when they face chronic illnesses like diabetes, heart disease, arthritis, and a host of other conditions. In older age, and with chronic illness, things are not "fixable." Chronic conditions are just that --chronic. The unfixable won't ever go away and requires daily management.
Choice can become even more difficult when immediately life-threatening and unfixable conditions like some cancers strike. How aggressive should treatment be? How should one choose from an array of options for treatment? How does one manage the likely tradeoffs between time and quality of life?
"One has to decide whether one's fears or one's hopes are what should matter most." This is one of the many issues to ponder in a superb new book by Atul Gawande: Being Mortal: Medicine and What Matters in the End. Dr. Gawande examines the role of the physician in helping patients to make decisions about their care. He surveys the many medical care choices that often must be made by older and more seriously ill patients, and the critical importance of preserving each individual's right to make their own autonomous choices. "This is what it means to have autonomy--you may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them."
What role should health professionals play in this process of choosing? In the "old days," physicians were taught to follow the authoritarian model, and tell their patients: "Take these medications and this treatment, because I know best." Even now (although usually more subtly) some clinicians urge their patients with cancer or other life-threatening conditions to submit to extraordinary treatments long past the point of usefulness and any hope of offering an acceptable quality of life. "...the only mistake physicians seem to fear is doing too little. " Gawande notes, "Many have no appreciation that equally terrible mistakes are possible in the other direction." A few decades ago, perhaps spurred by a patient-as-consumer movement, physicians responded to patient demands for more information, greater autonomy, and self-direction. Physicians were trained to give patients information-- a lot of it, sometimes unfiltered: You can try Medication A, or B, or C (pick one). And here are the things you could do to manage your diabetes. Testing your blood glucose level is best done four times a day; following a good diet and getting some exercise can be helpful, and here are some pamphlets.
In this informative approach, there is little direction or support. In the management of chronic disease, and in the treatment of very serious conditions, the "informative" approach becomes a bit like sending the patient off to fly a small airplane, mostly on their own: Here's a flying lesson, and the tower will ask you for your location once in a while, and here's a manual on flying ... good luck!
But as Dr. Edward Wagner (developer of the 'Chronic Care Model' who suggested the above analogy) notes, chronic disease requires both biological and behavioral management. His Chronic Care Model (CCM) is an organizing framework for improving chronic illness care--and it consists of several components of healthcare delivery, some of which are system-focused and others of which are implemented at the level of direct patient care. Among those that directly benefit patients: (1) helping people make decisions about their treatment in conjunction with their physicians and the rest of the healthcare team; (2) helping people with self-management of their chronic conditions, including dietary management, exercise, and adherence to medications; and (3) connecting people to community resources that can help provide both practical and emotional support. There is much strong evidence that this approach to chronic disease care works: it keeps people out of the hospital and the emergency department by preventing medical crises and intervening early --when problems are brewing. It improves quality of life, and helps people avoid depression. It saves a lot in medical care costs.
As Dr. Gawande notes, we appreciate doctors who push us to avoid shortsighted choices: to follow a treatment that has a good, and documented, chance of helping; to commit to adhering to our medications, our diets, and our exercise plans. As patients, we all want, and need, better than one-size-fits-all recommendations for choosing and managing our complex care. We need doctors (indeed the whole medical team, including nurses and psychologists) to deliberate with us about our goals for the life we have remaining, and to see our health not simply as an end in itself, but as a stepping-stone to our life goals.
According to Dr. Gawande, sometimes the best medical treatment requires each of us to "contemplate the unfixables in our life." Often, medical care cannot "fix" things. Whether it is chronic disease or a condition that likely will shorten our life, we need a team of health professionals who will communicate with us, coordinate our care, and collaborate to help us live, each day, in the best possible way.
Often, though, the right choices are not clear; the information is complicated and can be interpreted differently depending upon one's values and point of view. People often face complicated medical decisions when they grow older and when they face chronic illnesses like diabetes, heart disease, arthritis, and a host of other conditions. In older age, and with chronic illness, things are not "fixable." Chronic conditions are just that --chronic. The unfixable won't ever go away and requires daily management.
Choice can become even more difficult when immediately life-threatening and unfixable conditions like some cancers strike. How aggressive should treatment be? How should one choose from an array of options for treatment? How does one manage the likely tradeoffs between time and quality of life?
"One has to decide whether one's fears or one's hopes are what should matter most." This is one of the many issues to ponder in a superb new book by Atul Gawande: Being Mortal: Medicine and What Matters in the End. Dr. Gawande examines the role of the physician in helping patients to make decisions about their care. He surveys the many medical care choices that often must be made by older and more seriously ill patients, and the critical importance of preserving each individual's right to make their own autonomous choices. "This is what it means to have autonomy--you may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them."
What role should health professionals play in this process of choosing? In the "old days," physicians were taught to follow the authoritarian model, and tell their patients: "Take these medications and this treatment, because I know best." Even now (although usually more subtly) some clinicians urge their patients with cancer or other life-threatening conditions to submit to extraordinary treatments long past the point of usefulness and any hope of offering an acceptable quality of life. "...the only mistake physicians seem to fear is doing too little. " Gawande notes, "Many have no appreciation that equally terrible mistakes are possible in the other direction." A few decades ago, perhaps spurred by a patient-as-consumer movement, physicians responded to patient demands for more information, greater autonomy, and self-direction. Physicians were trained to give patients information-- a lot of it, sometimes unfiltered: You can try Medication A, or B, or C (pick one). And here are the things you could do to manage your diabetes. Testing your blood glucose level is best done four times a day; following a good diet and getting some exercise can be helpful, and here are some pamphlets.
In this informative approach, there is little direction or support. In the management of chronic disease, and in the treatment of very serious conditions, the "informative" approach becomes a bit like sending the patient off to fly a small airplane, mostly on their own: Here's a flying lesson, and the tower will ask you for your location once in a while, and here's a manual on flying ... good luck!
But as Dr. Edward Wagner (developer of the 'Chronic Care Model' who suggested the above analogy) notes, chronic disease requires both biological and behavioral management. His Chronic Care Model (CCM) is an organizing framework for improving chronic illness care--and it consists of several components of healthcare delivery, some of which are system-focused and others of which are implemented at the level of direct patient care. Among those that directly benefit patients: (1) helping people make decisions about their treatment in conjunction with their physicians and the rest of the healthcare team; (2) helping people with self-management of their chronic conditions, including dietary management, exercise, and adherence to medications; and (3) connecting people to community resources that can help provide both practical and emotional support. There is much strong evidence that this approach to chronic disease care works: it keeps people out of the hospital and the emergency department by preventing medical crises and intervening early --when problems are brewing. It improves quality of life, and helps people avoid depression. It saves a lot in medical care costs.
As Dr. Gawande notes, we appreciate doctors who push us to avoid shortsighted choices: to follow a treatment that has a good, and documented, chance of helping; to commit to adhering to our medications, our diets, and our exercise plans. As patients, we all want, and need, better than one-size-fits-all recommendations for choosing and managing our complex care. We need doctors (indeed the whole medical team, including nurses and psychologists) to deliberate with us about our goals for the life we have remaining, and to see our health not simply as an end in itself, but as a stepping-stone to our life goals.
According to Dr. Gawande, sometimes the best medical treatment requires each of us to "contemplate the unfixables in our life." Often, medical care cannot "fix" things. Whether it is chronic disease or a condition that likely will shorten our life, we need a team of health professionals who will communicate with us, coordinate our care, and collaborate to help us live, each day, in the best possible way.
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