Comment: Not surprisingly, the media has studiously ignored this report. This chapter is quite long; this is an excerpt. To read the entire chapter or report, please go to the URL. [N Valko R.N.]
The President’s Council on Bioethics
Washington, D.C. September 2005
The Limited Wisdom of Advance Directives
As the American population ages, the dilemmas and obligations of making caregiving decisions for incapacitated patientsincluding decisions about when to initiate, forgo, or cease potentially life-sustaining treatmentswill only become more widespread and more acute.
As we described in the previous chapter, more people will experience longer periods of dependence, including years of mental incapacitation. Deciding the best course of medical care during this extended period of debility will typically fall to surrogatesincluding family members and friends, health care professionals and social workers, and sometimes state guardians called upon to speak for those without proxies or courts called upon to adjudicate cases in which surrogates disagree.
If we fail to think ahead about what we want done and what we owe to those who can no longer speak for themselves, we are more likely to make the necessary decisions in a state of excessive confusion and crisis. But if we plan ahead thoughtlessly or unwisely, we may in fact hamper efforts, when the time arrives, to provide the kind of care that we will then need and deserve.
In the United States, our effort to think ahead about caregiving for incapacitated persons has taken shape mainly around the legal instrument of advance directivesboth “instruction directives” that aim to dictate how one should be cared for and “proxy directives” that appoint others to make or execute caregiving decisions.i
Advance directives came into existence at a particular time in our recent history, when people began to worry that the healer’s art on which we all rely to make life better could also be used in ways that seemed ambiguous or even harmful.
People worried especially that life-sustaining medical technologies might keep them alive for too long in what they perceived to be an undignified state, unrewarding to themselves and excessively burdensome to their loved ones. More generally, people worried that decisions might be made without sufficient regard to their own wishes and welfare. Advance directives were created as a way to alleviate these concerns.
A series of high-profile court cases, from the Quinlan case of 1976 to the Cruzan case of 1990, gave further credence to the value of leaving explicit instructions in advance about future treatment preferences, to be followed should one become incapacitated, and of formally designating a trusted surrogate to make medical decisions on one’s behalf should one no longer be able to decide for oneself.
A consensus seemed to emerge, formally ratified in the federal Patient Self-Determination Act of 1990, that widespread completion of advance directives is the best way to ensure that medical care of the incapacitated near the end of life will conform to the wishes and protect the interests of the patient. More recently, the Schiavo case has led to renewed calls for living wills: If only she had made her treatment preferences clear in advance, some argued, everyone might have been spared the wrenching decisions, bitter court battles, and national drama that ensued. Of course, the Schiavo case…is hardly paradigmatic of the social and ethical challenge facing our society.
Vastly more typical is the patient suffering the gradual, degenerative decline toward incompetence and physical vulnerability associated with Alzheimer’s disease and other dementias. It is primarily for such persons that the value of advance directives has been especially urged.
And yet, studies indicate that only a small percentage of Americans actually have formal advance directives, and those that exist are often vague or limited. Thus, in most cases, the burden of decision-making for incapacitated elderly patients still falls on caregivers making contemporaneous decisions. This should not be surprising. Indeed, as we will indicate, in most cases, it will be inevitable.
Our goal in this chapter is to evaluate the wisdom and limits of advance directivesboth instruction directives and proxy directivesbuilding on the extensive work of numerous social scientists, legal scholars, medical experts, and bioethicists who have studied the subject in recent years.ii We seek not only to gauge the effectiveness of advance directives in practice, but also to reflect on the broader significance of this approach to aging and caregiving.
We state the conclusion in advance: The need to make decisions on behalf of others will only become more complicated as the American population ages; and it is misleading to think that, through wider use of living wills, competent persons will be able to direct their own care simply by leaving detailed instructions in advance.
In fact, the evidence suggests that this “solution” to the problem of caregiving in an aging society is not only unrealistic but in several respects undesirable. Despite years of urging, most Americans do not have living wills, either because they would rather not think about their own dependence and death, or because they are wise enough to know that aging and dying sometimes mean placing oneself in the care of others.
Not only are living wills unlikely to achieve their own stated goals, but those goals themselves are open to question. Living wills make autonomy and self-determination the primary values at a time of life when one is no longer autonomous or self-determining, and when what one needs is loyal and loving care. This paradox is at the heart of the trouble with this approach to caregiving.
This does not mean that advance directives or advance care planning are useless or unnecessary. Proxy directives serve the wise and helpful purpose of putting one’s trust explicitly in the hands of loved ones who rightly bear the burden of providing care and making decisions. And advance care planningnot only about treatment preferences but also about housing arrangements and long-term care optionsis a wise way to come to terms with the possibility of one’s own future dependence, at a stage of life when one can still participate in such planning. But in the end, no legal instrument can substitute for wise and loving choices, made on the spot, when the precise treatment dilemma is clear and care decisions are needed. Proxy directives can appoint decisionmakers, but only ethical reflection and prudent judgment can guide them at the bedside. And advance care planning can help prevent future decisions from being made in ignorance or in crisis. But such planning should always aim at providing the best care possible for the patient as he or she might be in the future, which means providing care for a person whose precise needs can never fully be known at the time such advance planning occurs.
We acknowledge at the outset that even the most passionate advocates for living wills, the major focus of the analysis that follows, do not see these legal instruments as sufficient in themselves to address the needs of long-term care for those who suffer from age-related debility and dementia. But living wills serve as an exampleperhaps a defining exampleof how our society tends to approach the question of caregiving for the incapacitated, including and especially those with dementia. Seeing the limits of this legal approach clarifies the need for the kind of ethical approach that we offer in Chapters 3 and 4. Ou
itical analysis of advance directives is thus a prelude to the positive ethical guidelines that follow, focused not simply on discerning or executing an incompetent person’s prior wishes but on providing the best care possible for the person now placed in our care.
I. Defining Key Terms
In order to understand and evaluate advance directives more fully, we first need to define some key terms more precisely:
Advance treatment directives are written or oral declarations by individuals capable of making informed and voluntary medical decisions. These declarations aim at shaping future care decisions if and when the individual loses the capacity for independent choice. Advance treatment directive (or just “advance directive”) is an umbrella term that encompasses both “instruction directives” and “proxy directives.”
Instruction directives are written or oral statements expressing a person’s actual treatment preferences. Instruction directives can be quite specific, offering detailed descriptions of the medical interventions a person would want administered or withheld in different health situations. More often, they contain general statements, reflecting the person’s basic values, about the considerations that should guide those at the bedside.
Living wills are written instruction directives. The earliest living wills typically expressed the person’s wish not to receive “heroic” or “extraordinary” measures if death was “imminent.” Later versions moved away from these vague terms and gave people the opportunity to refuse specific medical interventions, such as resuscitation, respirator care, antibiotics, or medical nutrition and hydration. Later versions were also designed to allow individuals to request, as well as refuse, particular types of treatment. Many living wills use standard legal forms that individuals can easily fill out at the direction of an attorney; others involve extensive narrative statements about one’s personal values and treatment preferences.
Because relatively few people go through the formalities of completing a written advance directive, oral statements are the most common instruction directives available to caregivers. Relatives and clinicians sometimes consider a person’s past remarks about the kind of treatments or quality of life that would be acceptable as relevant information in making medical decisions on that person’s behalf. Like written instruction directives, oral directives vary in specificity and precision. They can also be more difficult to evaluate because the seriousness of the speaker’s intent is not always obvious. For example, statements made in response to watching a film or visiting an ailing relative may or may not be well considered, and their significance for future caregiving decisions is often hard to judge.
Proxy directives, frequently called “health care powers of attorney,” may also be written or oral. People making a proxy directive designate someone they trust to make medical decisions on their behalf and to act as their representative if they become incapacitated. People who would prefer one relative over another or a friend over a family member as their representative can use proxy directives to give effect to their preferences. Appointing a formal proxy can be especially valuable if a patient has no close family members, if the patient’s relatives are dispersed, or if relatives disagree among themselves.
The two types of directives may be combined in a form that both sets forth the individual’s instructions about future care and designates a proxy to cope with the actual treatment situations that later arise.iii
II. The Emergence of Advance Directives in Policy and Law
Advance directives cannot be understood in the abstract, separate from the specific context in which they emerged or the legal and public policy environment in which they now operate. Viewed historically, advance directives originated largely as a response to novel clinical circumstances, in which more and more people whose basic mental and physical capacities had been permanently lost due to illness or injury could be kept alive for extended periods by medical intervention. Many people feared living indefinitely on machines in a profoundly diminished condition. They worried about burdening loved ones, existing as mere shells of their former selves, or bankrupting their family with the costs of long-term care. In response, people sought means to restrict the kinds of medical interventions they would accept should they become incapacitated, or to appoint trusted surrogates to make medical decisions armed with the necessary legal authority to forgo or stop unwanted interventions.
Legal thinkers had a major role in promoting advance directives. A lawyer, Luis Kutner, described an early version of the living will in 1969. Expressing concern about medicine’s increasing ability to prolong life in what he called “a state of indefinite vegetated animation,” he suggested a written document for people seeking to avoid this fate.1 By preparing such a document, individuals could register in advance their consent to or refusal of proposed future treatments if and when they were unable to engage in independent decision-making. Kutner offered the living will as a device that would allow people to express religious or other beliefs relevant to medical care and would protect clinicians from potential liability for withholding or withdrawing life-sustaining interventions.
During the 1970s, state legislatures and courts began to extend formal legal recognition to advance treatment decision-making. In 1976, California became the first of many states to enact a law designed to allow “natural death” or “death with dignity.” The California Natural Death Act declared that adult patients had the right to decide about life-sustaining medical procedures, including the right “to make a written directive instructing [their] physician to withhold or withdraw life-sustaining procedures in the event of a terminal condition.”2 The directive would take effect if patients became unable to communicate their contemporaneous views on life-sustaining interventions.
The first judicial support for basing such clinical decisions on a patient’s past wishes also came in 1976. Like Theresa Marie Schiavo, Karen Ann Quinlan was a young woman who had suffered severe brain damage and been diagnosed in a persistent vegetative state. Her family sought removal of the respirator that was believed to be sustaining her life. Worried about possible legal implications, physicians and hospital officials asked for a court ruling on the matter.
In its opinion resolving the case, the New Jersey Supreme Court first noted that a competent patient would be free to refuse the respirator. It then engaged in the following thought experiment:
We have no doubt, in these unhappy circumstances, that if Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she would soon return) and perceptive of her irreversible condition, she could effectively decide upon discontinuance of the life-support apparatus, even if it meant the prospect of natural death.3
The court then determined that the onset of incapacity failed to eliminate the patient’s right to refuse treatment. Although she could then no longer assert the right for herself, her father-guardian could do so on her behalf. And though there was no clear evidence indicating how Quinlan would choose, the court said physicians could forgo treatment if this was her family’s “best judgment” as to how she would exercise her right to decide.iv
Legal authorities in other states soon joined California and New Jersey in recognizing the competent individual’s right to control future treatment. Today, all states have laws authorizing some form of advance directive.4 These laws vary in scope and coverage. For example, some state laws authorize directives for patients with any irreversible, incurable condition expected to cause death in the near future if treatment is f
; other state laws adopt a narrower definition of eligible patients. Some state laws require an explicit statement from individuals seeking to refuse medical nutrition and hydration, while others include these measures in the general category of life-sustaining interventions that may be refused. Despite these differences, all of the existing statutes endorse the concept of advance treatment decision-making and protect from liability clinicians who act according to the terms of a properly made directive. The laws do not require individuals to make directives, however; nor do they represent the sole legally acceptable basis for forgoing life-sustaining treatment.
Federal officials, too, have offered support for advance directives. In 1990, Congress enacted the Patient Self Determination Act (PSDA).5 The law requires hospitals, nursing facilities, and other health care organizations receiving Medicare and Medicaid funds to give adults under their care information about their rights under state law to make advance directives. If someone has an advance directive, the information must be noted in that person’s medical record.
Finally, the United States Supreme Court has indicated that decisions about future care may be part of the individual’s constitutionally protected liberty interest. In Cruzan v. Director, Missouri Department of Health,6 the Court considered the case of another young woman diagnosed in a persistent vegetative state. Nancy Cruzan had no living will or other advance directive, and Missouri state officials, as well as the state courts, blocked her family’s request to remove the feeding tube that was sustaining her life. The U.S. Supreme Court held that Missouri could prohibit cessation of treatment in the absence of Cruzan’s explicit and precise wish to refuse nutrition and hydration in her current circumstances.
Writing for the majority, Chief Justice Rehnquist said that the Constitution permits (but does not require) states to demand clear and convincing evidence of an incapacitated patient’s wish to refuse life-sustaining treatment. This evidentiary demand was justified, he asserted, as “a procedural safeguard to assure that the action of the surrogate [decision-maker] conforms as best it may to the wishes expressed by the patient when competent.”7The Court’s decision thus affirmed state policies that granted a privileged place to a patient’s prior wishes in making current treatment decisions, but also affirmed the right of individual states to establish their own criteria for deciding if and when those prior wishes are clear and thus operative in particular cases. v any commentators believe that Cruzan imposes an obligation on states to respect patients’ explicit advance treatment decisions, but since the case did not involve or address this question directly, the specific contours of any putative constitutional right are as yet unclear.
The widespread embrace of advance treatment decision-making by many legal officials is traceable to the law governing medical decisions by competent patients. When courts began to encounter cases involving adult patients refusing life-sustaining interventions, they proceeded to examine the strength of the individual’s interest in controlling medical care and to balance that interest against competing considerations, such as the state’s interests in protecting life and the ethical integrity of the health professionals caring for the patient. Courts assigned significant weight to the patient’s interest in controlling care, on grounds that the patient must bear the physical and other burdens associated with life-prolonging measures. They also observed that in a pluralistic nation such as the United States, individuals have different views on the relative importance of survival and quality of life. Accordingly, very strong justification would be required to impose treatment against the competent individual’s wishes.8
When patients could no longer choose their preferred treatment alternative, judges thought that the next best option would be to consult any previous instructions offered by the patient about life-sustaining measures. By giving priority to the individual’s former wishes, legal authorities could seemingly continue to respect the individual’s interest in controlling medical care. The courts also maintained that this approach would protect vulnerable patients from the risks of having their care determined by relatives and clinicians with their own concerns and agendas.9
Nearly three decades after Quinlan and the first Natural Death Act, advance decision-making remains popular among legal officials, at least in the abstract. Courts regard the patient’s prior instructions as the preferred basis for treatment decisions, and both state and federal lawmakers have promoted this approach in legislation. Nevertheless, courts and legislatures also recognize the limits of advance treatment decision-making. The dearth of explicit directives, as well as the implementation problems discussed below, have compelled officials to develop and use other approaches to resolving questions about treatment for incapacitated patients.
Besides legislation authorizing health care proxies to make decisions at the bedside, many states now have statutes recognizing family members as appropriate surrogates for incompetent patients lacking formal directives. Moreover, when advance directives are absent or fail to offer clear guidance to surrogates, two other approaches to clinical decision-making may come into play. These two approaches are based on traditional legal standards governing financial and personal decisions for legally incompetent persons (that is, minors and adults judicially determined to lack decisional capacity). Courts, policymakers, and medical ethicists sometimes apply these approaches in the medical setting as well.
The “substituted judgment” standard combines information about a patient’s past with an evaluation of that patient’s current situation. As with advance directives, the goal is to determine the treatment alternative most consistent with the patient’s earlier values and preferences. But the substituted judgment standard is applied when the patient failed to issue a formal advance directive. The aim is to guess, here and now, what kind of treatment the patient would choose, were he (miraculously) to become competent just long enough to say what he would want done. To reach the substituted judgment in practice, caregivers must rely on more general information, such as the patient’s religious affiliation, cultural background, or attitudes toward medical care.
Several difficulties can arise in applying the substituted judgment standard. Relatives and friends may report remarks and behavior that point in different directions or that support a range of treatment options. Questions may arise about whether a patient’s statement or action was meant as a deliberate and thoughtful indication of personal beliefs and values. Clinicians may wonder whether evidence about the patient’s past is being accurately reported. For these reasons, many believe that the substituted judgment standard should also include a close examination of the incapacitated patient’s existing condition and an evaluation of the benefits and burdens that would accompany a decision to administer or forgo treatment.10
The “best interests” standard applies when information about the patient’s previous views fails to point to a particular treatment choice. Instead of focusing on evidence about the patient’s personal, subjective views, the standard adopts “the perspective of a ‘reasonable person,’ choosing as most people would choose for themselves.”11
Relatives and clinicians applying the best interests standard focus on the patient’s present circumstances and consider the positive and negative effects of different treatment decisions. They examine matters such as pain, distress, and probability of treatment success. The best interests standard requires others to weigh and balance different dimensions of the patient’s situation, such as the bur
dens that administering or forgoing treatment would impose and the benefits of the extended life that treatment could provide. Because people value quality of life and survival differently, they may reach different conclusions about appropriate treatment under this standard.vi
Nine years after its Quinlan decision, the New Jersey Supreme Court offered an extensive analysis of the dementia treatment situation, developing both the substituted judgment and best interests standards in its own specific directions. In re Conroy12 involved an elderly nursing home resident with severe dementia and other health problems. She was conscious but significantly impaired and had a life expectancy of about a year. Her nephew, her only biological relative, asked the court to authorize removal of her feeding tube. There was no advance directive in this case, but the nephew maintained that she had rejected medical interventions throughout her life and would never have permitted the tube to be inserted.
In its ruling, the court set forth three standards to apply in cases like Conroy’s. First is the “subjective standard,” which applies when there is “clear evidence” that the patient would have made a particular treatment choice in her current circumstances. This evidence could be in the form of a living will; it might also be testimony about the patient’s verbal comments, conduct, or religious beliefs. The court found that the available information on Conroy’s prior preferences was insufficient to satisfy the clear evidence required under the subjective standard.
Acknowledging that it will sometimes be impossible to know for certain what the patient would choose, the court described two standards (its own versions of substituted judgment and best interests) that would permit non-treatment when clear evidence of a patient’s prior wishes and intent is lacking. One is the “limited-objective standard,” which applies when, as in Conroy’s case, there is “some trustworthy evidence that the patient would have refused the treatment.” Under this standard, treatment may be forgone if “it is clear that the burdens of the patient’s continued life with the treatment outweigh the benefits of that life for him.”
Conroy’s third alternative is called the “pure-objective standard.” This standard applies when there is no trustworthy evidence that the patient would have opposed treatment. This standard allows treatment to be forgone if two conditions are met: first, if “the net burdens of the patient’s life clearly and markedly outweigh the benefits that the patient derives from life,” and second, if “the recurring, unavoidable and severe pain of the patient’s life with the treatment [are] such that the effect of administering life-sustaining treatment would be inhumane.”
In making its decision, the court recognized that the evidence of prior preferences might be more or less probative, depending on the specificity of the individual’s statements and the “remoteness, consistency, and thoughtfulness of the prior statements or actions.” Its version of substituted judgment, the limited-objective standard, restricts the effect that general evidence of the patient’s previous preferences may have on later care. When the evidence is less than clear, the court required decisionmakers to focus on the patient’s contemporaneous interests.
By now, several other state supreme courts have joined the New Jersey court in limiting the impact of general evidence about a patient’s previous beliefs and values. When asked to resolve cases involving conscious dementia or brain-injured patients, these courts refused to authorize cessation of treatment based on evidence of a patient’s informal statements about medical care and quality of life.13 In the absence of a formal advance directive or relatively explicit verbal instructions, the courts based their decisions on the patient’s current welfare.
Yet discerning a person’s true welfare is a complicated and often controversial legal and ethical question. For some, a person’s welfare is best served by always following the advance instructions given by the once-competent self, if such directions exist, even if doing so seems to harm the incapacitated person now here. For others, patient welfare hinges entirely on whether “the net burdens of the patient’s life clearly and markedly outweigh the benefits that the patient derives from life,” as the Conroy decision put it, suggesting that life with certain burdens is sometimes better not extended even if the life-sustaining treatment itself is not very burdensome. And for still others, serving a patient’s welfare means always benefiting the life the person still has, however diminished or burdened by debility and disease.
So far, neither the courts nor policymakers have adequately investigated what patient welfare really meansa task that properly begins in ethical reflection, not legal decision-making. And indeed, the vast majority of cases regarding medical treatment of incompetent patients never come to court (or even to hospital-based ethics committees). Those that do reach the courts do so only because of serious disagreements among the caregivers, because no family member or proxy is available to make decisions, or because hospitals and medical professionals are worried about liability. But these cases remain the minority.
Most difficult cases will be resolved not in courts by judges but at the bedside by family, friends, and clinicians struggling with the question: What do we owe the person now in our care?
Thus, reflection on what it means to benefit (or burden) incompetent and incapacitated patients will remain a grave necessity. Our legal procedures and arrangements surely influence these ethical deliberations, but they can never replace them and in some cases they might even limit or deform them. We shall explore the ethical dimensions of caregiving in the chapters that follow.
But first we must evaluate advance directives on their own termsby looking at the ethical principles that guide this approach to caregiving and the evidence of this legal instrument’s success or failure in practice. We focus first and primarily on advance instruction directives and living wills, the instrument that often gains the greatest enthusiasm but also presents the greatest problems….
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