Their proposal is published in a paper that appears in the August 17, 2010 issue of the “Annals of Internal Medicine.”
Advance care planning is a process intended to allow adults to communicate their wishes for end-of-life care in advance of a medical crisis. The approach generally includes the specification of those wishes in official documents known as advance directives.
Rebecca Sudore, MD, an SFVAMC physician and an assistant professor of medicine at the University of California, San Francisco, and VA Connecticut physician Terri Fried, MD, who is also a professor of medicine at Yale University, note a number of problems and inadequacies associated with traditional advance care planning.
Those problems include the difficulty that most people have in predicting their own future preferences for medical treatment; the likelihood that their preference and values will change along with their age and health status; their inability to envision, when healthy, how they will cope with illness and disability; and the difficulties and ambiguities that clinicians and surrogate decision-makers often encounter in attempting to interpret and carry out a patient’s advance care directives.
“Up to 76 percent of people will have to have someone else make medical decisions for them at the end of life,” notes Sudore. “We don’t prepare patients and their families to deal with this situation, and it’s frightening and difficult for them to know what to do. It would be so much easier if people had some preparation ahead of time.”
Sudore says advance directives are “just one piece of the advance care planning puzzle. By and of themselves, they are not flexible enough to allow for changes in patients’ values, preferences, and situations over time. They also do not prepare patients and surrogates for how to go about making difficult decisions in the future.”
The physicians call instead for patients, family members, and surrogate decision-makers to work with clinicians well in advance of any anticipated medical crisis in order to lay the groundwork for what they term “the best possible in-the-moment medical decisions” at the time that end-of-life care choices actually need to be made.
Sudore and Fried propose three “key steps” in preparing patients and surrogate decision-makers for making medical decisions at the end of life.
The first is to “choose an appropriate surrogate decision-maker.” According to Sudore, research has shown that “half the time, the surrogate doesn’t know they were even chosen to make these momentous end-of-life decisions on someone else’s behalf, and has no idea what the person would want. So it’s not just a matter of saying, ‘I want my wife or son to do it.’ Does that person know? Have they agreed to do this for you? Have you talked with them so they have some idea what you want? The message here is, choose your surrogate decision-maker wisely, and make sure they understand their role.”
The second step, she says, is for patients to “start clarifying their end-of-life goals and values now, but to do so in a way that allows for changes in those goals and values over time.” When doing this, she says, it is often helpful for people to bring to mind health states they have personally experienced or seen others experience. “Think about the overall quality of life associated with that health state,” she says, “and whether that quality is acceptable to you, instead of focusing on whether you want a particular treatment or CPR.”
As an example, Sudore notes that “younger people will often say, in effect, ‘If I have to go to a nursing home, that’s it, pull the plug.’ But then, years later, when they get to the nursing home, they realize they still have a good quality of life. People can adapt to their illnesses, and advance care planning needs to reflect that.”
The third step is to “establish leeway for surrogate decision-makers,” by which Sudore means “give the decision-maker permission to work with doctors and make the best decisions” at key moments near the end of the patient’s life, even if they might contradict specific instructions. For example, she says, “in consultation with a clinician, a surrogate may realize they cannot honor the patient’s wish to die at home because they cannot provide the medical care to keep them comfortable.”
Sudore explains that “there is a great deal of scientific literature about how stressful it is to make decisions for someone else. But, other studies have shown that many patients want to give their decision-makers some leeway, because they trust them. Giving surrogates explicit permission to make the best decision they can, while working with the patient’s doctors, will go a long way toward relieving that stress, and thus help them make better decisions on the patient’s behalf.”
The study was supported by funds from the Department of Veterans Affairs, a Pfizer Fellowship in Clear Health Communication, and the National Institutes of Health.
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