For 40 years, doctors, philosophers, and patients have been trying to figure out how to make sure that people can have a say in decisions about their medical care near the end of life, even if they are no longer able to speak for themselves. We’re still trying.
First we had the “living will.” A conventional will allows a person to specify what should happen to his property after he dies; why couldn’t a similar document indicate what should happen to his person while he was still alive but unable to articulate his treatment preferences? The problem with living wills, which were typically of the form “if I am terminally ill and there is no reasonable chance of my getting better, I do not want extraordinary measures to prolong my life,” is that they were too vague. Just exactly when is a person terminally ill? In the last days of life? Months? What about someone with a progressive, ultimately fatal disease such as Alzheimer’s, which can last years? At what point does someone with dementia become “terminally ill?” And what are extraordinary measures? A breathing tube? Attempted cardiopulmonary resuscitation? Hospitalization?
Because living wills were so imprecise, two physician-ethicists came up with the idea of an “instructional directive,” a document that spells out what the doctor should do in each of various situations. Called “The Medical Directive,” it took the form of a complicated grid and asked patients, when they were well enough to make medical decisions for themselves, what approach to treatment they would want if they were irreversibly comatose, if they were comatose with a very small chance of regaining some degree of function, if they had advanced cognitive impairment and terminal illness, or if they had advanced cognitive impairment but no (other) terminal illness. Prospective patients were offered 12 possible procedures or treatments, ranging from CPR to dialysis to antibiotics. For each of the 4 scenarios, they were asked to indicate if they would want (perhaps a better word is “accept”) the procedure if recommended by a doctor, if they would refuse the procedure, if they would want a limited trial, or if they were unsure. This document seemed like the doctor’s dream: it would tell the physician exactly what to do when faced with a very sick but mentally incapacitated patient. Considering a breathing tube? Chemotherapy? Blood tests? Just scan the Medical Directive and see if it’s on the approved list. But there were problems. It was a complicated document to fill out. It was not clear if patients understood what they were saying yes or no to when they filled it out. And it only included 4 clinical scenarios. What about the 85-year-old with heart disease, kidney failure, diabetes, and emphysema who was hospitalized with a severe pneumonia? That patient doesn’t show up in any of the 4 scenarios—but might not want some or all the proposed interventions.
Some people despaired of finding a way to record in advance what a patient would or would not want. Instead of telling the doctor what to do, they proposed telling the doctor whom to speak with to make medical decisions. With this approach, all a patient has to do is designate who that person should be—variously called a health care proxy or a durable power of attorney for health care or a surrogate decision-maker. But this is problematic, too. Often prospective patients choose a health care proxy without talking to that person about their preferences. Sometimes the proxy doesn’t even know he is the proxy.
In recent years, many physicians and ethicists have advocated “combination directives,” which include short versions of all the above documents: they name a surrogate, they summarize the patient’s general preferences, and they list which of a handful of procedures would be acceptable in each of several clinical situations. But even these combination directives were not a great solution, in part because only a few people filled them out, and in part because physicians had difficulty figuring out how to translate them into practice.
To solve the translation problem, physicians came up with a new approach: instead of relying on an advance directive, create a doctor’s order, binding on paramedics, emergency room physicians, nursing home staff, and any other medical personnel who came into contact with the patient. The earliest form of such an order was the “out of hospital DNR” order, a form signed by the patient and by his attending physician that stated that cardiopulmonary resuscitation should not be attempted. A more nuanced and complex approach is the Physician Orders for Life-Sustaining Treatment (POLST), piloted in Oregon. The POLST is supposed to build on a discussion with the patient about his goals of care. Based on that discussion, the patient and physician fill out a document that indicates which of various treatments (CPR, a ventilator for breathing, artificial nutrition) may be used. It’s similar to the Medical Directive, but does not ask the patient to imagine being in any of several conditions (the newer versions of the Medical Directive, incidentally, are expanded to include 6 situations), and it is a doctor’s order, not a statement of preferences.
POLST forms have caught on in many states. According to the National POLST organization, 14 of the 50 states have endorsed POLST (though only 2 of these have ‘mature’ programs), 27 are developing POLST programs, and 10 (including Washington, DC) have no programs. In Massachusetts, it’s the Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) and in West Virginia, it’s Physician Orders for Scope of Treatment (POST). But the big question is whether these forms are successful in assuring that the patient’s voice is heard. A new study in the Journal of the American Geriatrics Society—the largest analysis of the outcomes of the POLST program to date—says they are.
The authors examined all 58,000 adult deaths in the state of Oregon in 2010-2011 and found that 17,902 had submitted a POLST form to the “POLST Registry.” When they studied the preferences those patients expressed on the POLST, they found that 66% wanted a focus exclusively on comfort, 6.4% wanted maximal medical treatment, and 26.7% wanted something in between. They also found that patients who had completed a POLST form were more likely than those who had not be white, very elderly, and female, to live in an urban area, to have more than a high school education, and to have a diagnosis of cancer. When they looked at subpopulations with particular diagnoses, they found that 41% of people dying of cancer had filled out a POLST compared to 35% of people with Alzheimer’s disease and only 25% of people with heart disease.
To answer the question of the impact of POLST completion on the care the patients received, the authors looked at whether the patient died in the hospital—not necessarily an accurate marker of whether the medical order was carried out. It turns out that 1/3 of people who did not complete a POLST died in the hospital, compared to only 6% of people who had. Looked at differently, 6.4% of patients who specified a comfort-only approach (and specifically said they would not want to be hospitalized unless essential for comfort) on the POLST were in fact hospitalized, compared to 44.2% of those whose POLST forms said they were to have no restrictions on treatment and 34.2% of people with no POLST.
There’s much we still don’t know about the POLST. We don’t know how often patients got interventions they had specifically stated they didn’t want. We don’t know how often physicians recommended treatments or diagnostic tests and then proceeded with them—or changed course—because of what was specified on the POLST. Most crucially, we don’t know whether patients in fact discussed their general state of health, their prognosis, and their goals of care with their physician before completing a POLST form. We don’t know whether the 71% of patients who died without a POLST on record had been offered such a form and declined to fill it out or whether the subject hadn’t been broached with them.
What we do know from many studies is that when patients discuss their condition and their wishes with their family members and their doctors, they have a much better chance of having a comfortable final phase of life than if they do not. Translating those wishes into an advance directive or a medical order may turn out to be less important than having the discussion in the first place.