I sat with my elderly parents and their estate planning lawyer, going over documents. The lawyer had updated their will, revised their powers of attorney, and done various other lawyerly things. She handed my parents page after page for them to sign. After an hour of this, my eyes began glazing over. But then I heard her say “and here’s your living will,” and I was all ears.
My work as a geriatrician and palliative care specialist revolves around advance care planning, discussions with patients about their preferences for medical care in the event they lose the ability to make decisions. It’s a complicated enterprise that begins with clarifying the person’s overall health, then moves on to determine the goals of care—what is most important at that point in time—and then seeks to translate those goals into a plan of action. What I have learned by doing this with hundred of patients and their families, as well as by studying and writing about it, is that it is a process. Other researchers and practitioners in the field agree that advance care planning is not about completing a form, it’s about discussing prognosis, it’s about explaining what medical interventions can and cannot achieve and the burdens associated with them, and it’s about factoring the patient’s values and preferences into this complex discussion. What was an estate lawyer doing handing out a living will document and saying “sign here?”
Clearly the lawyer thought the document was self-explanatory and that most people would want to sign such a form. Clearly she believed it was her responsibility to offer such a form to my parents and she felt she was providing them the opportunity to retain control over their medical care at the end of life.
The irony is that Massachusetts, where this encounter between my parents and their attorney took place, does not have living will legislation. In Massachusetts, the only legally recognized form of advance care planning is a health care proxy—choosing who is empowered to make decisions if the patient loses the capacity to speak for himself. The Massachusetts legislature deliberately opted not to accord official status to living wills because they are vague, ambiguous, and seldom applicable to real life medical situations.
The living will my parents were given is a classic example of pseudo-precision: “If a situation should arise in which there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by medications or artificial means or procedures which serve only to prolong the process of my dying,” it begins. What is a “reasonable expectation of recovery?” A fifty-fifty chance? Is a 30% chance good enough? 10%? What does “recovery” mean anyway? Going home and living independently? Living in a nursing home and needing help with bathing and dressing? Going from unconsciousness and total paralysis to wakefulness and the ability to move one finger?
But there is more—the document seems, at first glance, to spell out the answers to these questions. It says “without limitation, I intend these instructions to apply if I am (i) terminally ill, (ii) permanently unconscious, or (iii) conscious, but have irreversible brain damage and there is no reasonable expectation that I will regain the ability to make decisions and express my wishes.” What is meant by “terminally ill?” Does it mean conforming to the Medicare hospice definition of having a life-expectancy of 6 months or less, if the disease follows its usual course? Does it mean death is imminent—in the next few hours or days? Or does it mean having a disease that is uniformly fatal, such as Alzheimer’s disease, which lasts 3-5 years, sometimes longer, from diagnosis until death? What is “extreme physical or mental disability?” Does this mean the most advanced stage of Alzheimer’s, or does moderately severe dementia—in which the individual can walk and talk, but has completely lost his short term memory and needs help with bathing, toileting, and personal care—qualify?
That’s not all. If my parents did seem to fall into any of the 3 categories of terminal illness, permanent unconsciousness, or irreversible brain damage, then it specifies that they would not want “ (a) electrical or mechanical resuscitation of my heart when it has stopped beating; (b) artificial nutrition or hydration when I am unable to take nourishment by mouth; (c) mechanical respiration when I am no longer able to sustain my own breathing; and (d) medications, tests and treatments for any purpose other than comfort.” There is no explanation of what any of these interventions entails and their benefits and burdens, nor is there any explanation of what the alternative might be. In principle, if my parents had a stroke that impaired decision-making capacity and the ability to swallow, but were awake and alert, they would not be given a feeding tube for nutrition, even if they were hungry and indicated they wanted to eat. In principle, if they were diagnosed with a fatal cancer and had a life expectancy of less than six months and were unable to make decisions for themselves, they could not receive radiation treatments to prolong life or antibiotics to cure a pneumonia.
Not only does this kind of living will potentially limit the use of treatment that might well be entirely appropriate and consistent with my parents’ wishes (if they understood what they were signing), but it also fails to protect them from overtreatment in most of the clinical situations which they are likely to encounter.
Whatever is meant by being “terminally ill” or suffering from “irreversible brain damage” with “no reasonable expectation that I will regain the ability to make decisions,” these are not the situations in which older people commonly find themselves. They find themselves in a whole host of situations in which they might well want limitation of treatment. Many 85-year olds, for example, have mild dementia, heart disease, arthritis, and diabetes. If they develop a severe pneumonia, another common scenario, this might well precipitate “delirium,” an acute confusional state in which they were unable to make medical decisions. Would they want to be put in an intensive care unit on a ventilator? The living will, which is supposed to guide proxies and physicians, is silent on this issue.
This seemingly innocuous living will, in short, failed to protect my parents from excessively burdensome treatments in a variety of very possible medical situations, and could prevent them from receiving desirable treatments in other situations. So how could they assure they would get the kind of treatment they wanted if they were unable to speak for themselves?
The answer is that they could discuss with their physician what sorts of medical interventions are consistent with their goals. Frail elders, for instance, if they wish to remain independent as long as possible, even if it means a few months less life, should opt to forgo attempted cardiopulmonary resuscitation. The reason is that CPR, when performed in this setting, is rarely successful, and in those instances where the person survives, he almost always experiences a significant decline in his ability to function on his own. Ideally, the health care proxy is present when the physician talks to the patient about preferences for care, so he will be well-positioned to carry out the patient’s wishes. It is important for the physician to document such discussions in the patient’s medical record. Formal “instructional directives” that spell out just which procedures a patient thinks he would want under what circumstances may be useful as a supplement to advance care planning discussions. An example is the “Five Wishes,” available from Aging With Dignity.
It is entirely appropriate for lawyers to give their clients a health care proxy form to sign—although it should be pointed out that no legal input is required to choose a surrogate. Anyone can print up the official Massachusetts health care proxy form and sign it, with two adult witnesses. There is no need to pay an attorney $100/hour for such a form. It is also reasonable to recommend to clients that they discuss with their doctor their preferences for medical care—in the context of their medical situation and their personal goals. At best, presenting clients with a living will and suggesting they sign it reduces the complex process of advance care planning to filling out a form. At worst, it is practicing medicine without a license. Is the lawyer in any position to explain the benefits and burdens of the medical interventions referred to in the living will, such as a ventilator (“mechanical respiration when I am no longer able to sustain my own breathing”), a feeding tube (“artificial nutrition…when I am unable to take nourishment by mouth”), or cardiopulmonary resuscitation (“electrical or mechanical resuscitation of my heart when it has stopped beating”)?
Physicians have shirked their responsibility by only sporadically engaging in advance care planning with their patients. The result is that lawyers are taking up the slack. Many state legislatures have contributed to the unfortunate conceptualization of advance medical planning as a legal issue through advance directive legislation: unlike Massachusetts, most states have living will laws as well as health care proxy laws and even prescribe what forms are legally recognized in their state. We need to reclaim advance care planning as a medical intervention that can prevent both over-treatment and under-treatment near the end of life.