A common response from many physicians to the question of what should lawyers know about advance directives for health care would be something along the lines of, “tell your clients to talk with their doctors about it,” because creating an advance directive is a medical, not a legal, endeavor. The argument goes, who better to talk with patients about their future treatments than the physicians charged with caring for them during those difficult times? But, despite the move to make creating advance directives an increasingly medical practice, evidenced by the as-yet unsuccessful campaign to make it a billable medical procedure, I hope to show that lawyers still have an important role to play. In my (admittedly minority) opinion, this role involves helping clients understand that choosing a good person to be one’s power of attorney for health care should take precedence over signing forms indicating which medical procedures to have or not have in the event of incapacity. The reason is that these forms often do not produce their intended results. Instead, patients can end up being given either too much futile medical intervention or too little beneficial care.
Obtaining an advance directive, which often includes a code status, i.e., a “Do Not Resuscitate” (DNR) versus “Full Code” designation, is becoming a routine part of being admitted to most hospitals, especially for older and gravely ill patients, and especially now that patients are increasingly cared for by hospitalists who have not previously known the patients. This trend is encouraged by the Patient Self-Determination Act, which requires that patients be asked about advance directives upon admission to a hospital. The presence of an advance directive has become an indicator for quality of care by accrediting institutions such as The Joint Commission (formerly known as the Joint Commission on Accreditation of Healthcare Organizations) and has spurred the increase in use of advance directives.
For physicians, obtaining a patient’s advance directive is largely motivated by a desire to spare the patient from the often futile application of so-called “life-saving” procedures. For many patients, advance directives are seen as a means of liberation from the “tyranny of futile technology” at the end of their lives. Because many patients admitted to hospitals are not in a good position to make decisions, and because they are often taken care of by strangers, there is increasing pressure to obtain advance directives earlier in the course of patients’ disease trajectory. In an effort to ensure more patients have advance directives ahead of time, many are now advocating that sooner is better. This belief has entered the realm of popular consciousness, and many older people are anxious to create their advance directives as a means of ensuring optimal care for themselves in the future.
But, despite all of this apparently positive movement toward the increased use of advance directives, the reality is that, despite their directives, many patients continue to receive futile care at the end of their lives that merely prolongs their suffering and dying. Less well-appreciated is the alternative scenario, also not uncommon, in which old and gravely ill patients who have advance directives are not given care that might actually help them. Advance directives may be ambiguous in certain medical situations. DNR orders, for example, may have meanings that go beyond simply not applying CPR. Several studies have shown that “DNR patients” tend to receive less aggressive care in general, sometimes appropriately, but also when they might have benefited from this care and might have wanted to be able to make the choice.
Why should lawyers be interested in advance directives? Given the current situation, you are uniquely situated to act as a positive force to improve the care of gravely ill and dying patients. You are consulted by clients about advance directives and, given that the original advance directives were crafted with legal experts and that their very existence is predicated on legal precedent, it is important for you to understand how and why advance directives currently function—or fail to function—and what you can do to help your clients navigate the difficult terrain of planning for end-of-life care.
The reasons that DNR patients may receive less aggressive care and that advance directives may fail to ensure desired and appropriate care can be better appreciated by taking a brief foray into the history and evolution of resuscitation and the advent of DNR and advance directives. This exploration will also suggest ways of ensuring your clients’ intentions are honored when they become patients.
The beginnings of the practice of applying resuscitation to everyone whose heart stops in the hospital can be traced back to the 1950s when the therapy involved open resuscitation, i.e., cracking open the chest and massaging the heart directly. CPR was, at that time, mostly limited to cases of cardiac arrest associated with anesthesia and surgery. However, with the development of the technique of external massage in the 1950s and a 70 percent success rate reported in the first published study in 1960, CPR began to be increasingly practiced outside of the operating room. It was only a few years after the 1960 report that resuscitation in the form of CPR became increasingly widespread in hospitals.
However, with this dramatic change in practice, it became evident that the initial success rates were not reproducible. The vast majority of patients whose hearts stopped could not be brought back with CPR. Reviewing the papers from that era, it becomes clear that the reason for the high success rates in the early studies lay in the very select population of patients receiving CPR. They had mostly suffered from iatrogenic (doctor caused) cardiac arrest from anesthesia and surgery and other procedures such as cardiac catheterization. Despite the extremely poor outcomes of CPR as it became more widespread, especially in patients who were at the end of terminal diseases, a number of forces led to the practice of performing CPR on all patients who developed stoppage of the circulation or cardiac arrest, regardless of whether CPR would help the patient.
It was not until 1974 that the first standardized order for withholding CPR was proposed by the American Heart Association and published in the Journal of the American Medical Association. This “Order Not to Resuscitate,” which quickly became known as DNR, was first proposed as a doctor-initiated process; there was no mention of discussing it with patients or their families. It was to be used on patients in the final phases of terminal diseases, patients who would clearly not benefit from CPR.
This would change dramatically just two years later and was no doubt influenced by the case of Karen Ann Quinlan, a young woman in a chronic, vegetative state; the New Jersey Supreme Court had ruled that doctors were required to comply with the requests of her parents to withdraw life support, then provided her in the form of mechanical ventilation. This case was precedent-setting because it was the first legally sanctioned removal of life support. It also established the importance of patient preferences, voiced in this case by the patient’s surrogates, in determining the application and withdrawal of therapy. It was also responsible for opening public discourse about the treatment of dying patients. Shortly after the case was decided, a series of papers in the New England Journal of Medicine on care of dying patients was published along with an editorial titled “Terminating Life Support: Out of the Closet!” In one of the papers, a physician, along with two lawyers, wrote that patients should make the decision about CPR and, if they were unable, family members should make the decision. The President’s Commission on Bioethics also supported this idea, and so the first advance directive was established.
Ironically, by forcing patients to opt out in advance, the DNR order sealed the default status of resuscitation by opting everyone else in. It was not long before other life-prolonging procedures, such as artificial nutrition and dialysis, began to be added to advance directive forms. These procedures, too, began to be provided by default. By default, then, a patient without an advance directive was to be evaluated based on very limited sets of considerations without regard for his or her overall condition and prognosis.
The default status of these therapies places pressure on physicians to have their older and sicker patients make choices ahead of time. But this may have unintended consequences.
When I admit one of my older patients to the hospital, one of the first questions the covering medical resident asks me is, “what is their code status?” Given the present state of affairs, this is an excellent question. It signals that the resident is asking whether I have had the “advance directive conversation” and whether the patient wants “aggressive” care or not. That this is all intuited from whether patients are “DNR” or “Full Code” is understandable given the DNR’s history as the first advance directive and its use as an identifier of patients who would not benefit from CPR because they are in the final phase of terminal illness. Of course, the residents also want to spare my patients from futile CPR at the end of their lives, and this is a goal that I share. But I am more concerned that patients get the consideration and therapies that might actually help them in the present moment. And so I reply, “that’s not the question at hand,” and I tell them about the patient and his or her latest problems.
The advance directive has also evolved into another process your clients should understand: the “goals-of-care conversation,” which has become an increasingly common one for doctors to have with gravely ill and dying patients and their families. In this conversation, doctors will disclose the gravity of the situation and pose the question, “what are the patient’s goals?” This can be a very useful conversation because patients can become fully informed of their prognoses and be given a voice in their care. However, the reality of the conversation is that it often signals a lack of viable medical options besides those to palliate symptoms. Patients are then given the illusion of a choice between aggressive therapy, though none may exist that will help them, or palliative care. If they choose aggressive care, the physicians will attempt to “educate” the patient and family about the problems with that choice. This usually results in patients choosing the palliative approach. If the patient or family insists on the “aggressive” approach, several possible results may ensue. The patient may receive the requested futile therapy. Or, an ethics consult may be requested to help work out an agreeable solution, and/or the doctors will make unilateral decisions based on the futility of the requested aggressive therapy.
In many ways, the goals-of-care conversation and the advance directive from which it evolved can be seen as analogous to buying protection from the mob. Physicians are offering to protect patients from the default, mostly futile, therapies at the end of their lives if they choose to “be DNR” or select nonaggressive care. Although it is good to protect patients from these types of treatments, the price they pay for this protection in many circumstances is to forfeit consideration of potential diagnostic evaluations and therapeutic interventions that may actually help them. This is fine for patients who do not want any more medical interventions, but, in my experience, the vast majority of patients will consider therapies that have a good chance of helping them.
There is always some degree of uncertainty about the outcome of any medical therapy, but thoughtful physicians are able to give some idea of the likelihood of success, which ranges from almost none for CPR from non-iatrogenic causes at the end of a terminal disease, to a high likelihood of improvement from, for example, a pacemaker for complete heart blockage. Of course patients always have the right to forego therapy, even if it would help them.
In my opinion, the resuscitation choice should essentially be the last one made after all other therapeutic options and choices are exhausted so that premature DNR orders and all that these entail can be avoided.
How can lawyers help their clients create optimal advance directives? Clients should be educated about the perils of premature DNR. Even if they think they would not want CPR (a reasonable choice), clients who would want to be considered for the full complement of potential medical therapies should be advised to wait before including a DNR order in an advance directive. The first step in creating an advance directive should be the appointment of a suitable person as a durable power of attorney for health care (DPA). Clients should be encouraged to choose a DPA who will advocate on their behalf when they are unable to do so and who can consult effectively with physicians. Appointing an effective DPA could then obviate the need for an advance DNR order entirely.
The key to choosing an effective DPA is to select someone who is able to engage in decision-making conversations with physicians. The DPA must also be able to understand the degree of impairment the patient is willing to tolerate and the degree, therefore, to which the patient is willing to continue to receive aggressive therapy. Moreover, a client should be encouraged to seek physicians who are able and willing to engage in decision-making conversations and who can be trusted to honestly disclose the chances of therapies really helping all along the course of the client’s life.
In sum, I recommend that lawyers advise clients to:
- remain “Full Code,” since that status will require doctors to think more about possible diagnostic and treatment options;
- concentrate on choosing a good DPA;
- insist that the DPA be educated about the perils of premature DNR and the necessity of exploring treatment options with physicians;
- discuss with the DPA the conditions under which aggressive care might be stopped and how the resuscitation choice should be the last decision after all other therapeutic options and choices are exhausted.
Lawyers may also wish to reduce their reliance on certain pre-packaged forms and concentrate instead on those that create a durable power of attorney.
A number of the ideas I have discussed here are not mainstream, since most physicians tend to believe in the inherent ethical good of an advance directive and of emphasizing code status. Many will discount the idea that the DNR order adversely affects other care. However, one can hear in the everyday discourse among doctors and read in the empirical outcome studies that the reality is otherwise. Yet many physicians feel that continued education and goals-of-care conversations will limit the meaning of a DNR order to, “do not perform CPR at the end of life.” They believe that the practice of obtaining early DNRs should, therefore, continue.
And so the ideas presented here are not officially sanctioned by any organizations, though I have presented them in papers and symposia of the American Geriatrics Society and the Center for Medical Ethics in Kansas City, as well as in various forums at the University of Chicago, including those of its MacLean Center for Clinical Medical Ethics, of which I am assistant director. Perhaps addressing attorneys and other audiences outside the medical profession will result in wider acceptance of these unorthodox views. In any event, it is important to remember that my goals and those of physicians with more standard views are the same: we all seek to provide effective end-of-life care that both honors the wishes of our patients and recognizes the limits of our therapies.