TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY
Table of Contents
The President's Council on Bioethics
The Limited Wisdom of Advance Directives
As the American population ages, the dilemmas and obligations
of making caregiving decisions for incapacitated patients—including
decisions about when to initiate, forgo, or cease potentially life-sustaining
treatments—will 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 surrogates—including 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 directives—both "instruction directives"
that aim to dictate how one should be cared for and "proxy
directives" that appoint others to make or execute caregiving
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—involving sudden injury to a
young person, leading to a persistent vegetative state—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
Our goal in this chapter is to evaluate the wisdom and limits
of advance directives—both instruction directives and proxy
directives—building 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
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 planning—not only about treatment
preferences but also about housing arrangements and long-term care
options—is 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
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 example—perhaps
a defining example—of 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. Our critical 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
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
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 forgone; 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
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
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
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 burdens
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
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
In the absence of a formal advance directive or relatively explicit
verbal instructions, the courts based their decisions on the patient's
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 means—a 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 terms—by 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.
III. The Principles and Aims of Advance Instruction Directives
To its advocates, the instruction directive (or living will) seems
to offer an effective way of resolving the dilemmas of end-of-life
care by keeping the patient firmly in charge of his or her own medical
treatment. Since decisions about continuing or withdrawing medical
care near the end of life are always weighty, often agonizing, and
sometimes highly contentious, the living will appeals to many people
as a convenient procedural solution that can bypass the endless
substantive debates about what would constitute "best
care" for a particular incompetent patient. The living will
is seen as a vehicle by which the patient, freely exercising his
or her right to informed consent, can authorize the preferred course
of treatment or non-treatment, thereby relieving other persons and
institutions of the burden of deciding what to do in the hardest
cases, where medical intervention or non-intervention is often the
difference between living longer or dying sooner.
Here, in greater detail, are the various purposes that living
wills are thought to serve, both ethical and practical, and the
various arguments offered in their favor.
First, living wills serve and preserve self-determination. Since
it is the patient who primarily receives the benefits and bears
the burdens of any medical treatment (or non-treatment), most individuals
wish if possible to remain active participants in important decisions
regarding their own medical care. Facing the prospect of diminished
mental competence in old age, many of us are understandably concerned
that such medical decisions will increasingly be made for us by
others without our participation. A proxy directive can help ensure
that those decisions will always be made with input from or at the
direction of those who care about us. But filling out a living will
seems to provide a way whereby we can direct what happens
to us. We can make choices now, while still in possession of our
faculties, that would determine the kinds of medical care we receive
later in life, when those faculties may have diminished. In this
way, the benefits and burdens of end-of-life medical care will be,
in some measure, freely chosen by us rather than simply imposed
from without. Each individual would remain—by this "remote
control"—a self-determining agent, even when he can no
longer directly or contemporaneously determine his own fate.
Second, and continuing the theme of personal freedom, living wills
provide an opportunity for people to express and give effect to
their personal ideas about how they would like their lives to end.
In his book Life's Dominion, Ronald Dworkin argues that all
of us have certain "critical interests," that is, hopes
and aims that lend coherence, integrity, and meaning to our lives.
According to Dworkin, these critical interests rightly shape how
we see the final chapter of our lives and the specific actions we
take to ensure the personal ending we want. In particular, many
of us hope to avoid dying in circumstances that are out of character
with the rest of our lives or in ways we find unworthy or undignified.
As Dworkin puts it, most people "want their deaths, if possible,
to express and in that way vividly confirm the values they believe
most important to their lives."14The
choices inscribed in a living will can later safeguard these critical
interests at a time when the patient is losing or has lost reflective
control of his or her own life.
Third, and more practically, living wills offer protection against
maltreatment. Many people are concerned about the possibility of
over-treatment or under-treatment at the end of life, when they
are no longer in a position personally to accept or decline such
care. We may be worried that life-sustaining measures will be pursued
too aggressively, or we may be worried that too little will be done
on our behalf, once we are unable to speak up for ourselves. The
living will would seem to be a way to protect ourselves prospectively
against the imposition of unwanted interventions or the premature
cessation of all interventions.
Fourth, living wills can relieve anxiety and facilitate choice.
Decision-making about medical care near the end of life sometimes
involves a painful dilemma: should the patient's ailments be treated
aggressively, with a view to maximizing longevity, or should the
main focus be on insuring physical comfort, personal dignity, or
the possibility of dying peacefully at home with loved ones? Rather
than letting such decisions be made haphazardly or under duress,
when the patient is no longer able to make his wishes known, the
living will offers a way to adjudicate such tensions calmly and
rationally, well in advance of the extreme circumstances in which
they are likely to become manifest.
Fifth, living wills can help our loved ones. Patients are often
concerned that the painful burden of end-of-life medical decision-making
will fall too heavily on the shoulders of their family members,
friends, or other devoted caregivers. The living will recommends
itself as a way for us, in advance, to give permission to our loved
ones to continue treatment in some circumstances or to surrender
in others, and thereby to ease their distress in the face of our
decline and death. The concern addressed here is not that they might
decide badly, but that the very responsibility to decide without
explicit guidance would unnecessarily add to their anguish. Even
if the course of treatment chosen is ultimately the same as what
the family would have chosen uninstructed, the guidance provided
by a living will can help the patient's family (as well as the physician)
make the painful decisions with a degree of confidence and closure.
Sixth, living wills can protect financial resources. Many people
approaching the end of life worry that, in the absence of written
directives explicitly limiting medical treatments, a disproportionate
share of their family's resources could be squandered on costly
medical interventions of limited value. They hope to avoid such
a gross misallocation of resources, in which nearly all of their
assets are spent down in the final months of life, when they would
rather see that wealth used on behalf of their spouse, children,
or grandchildren. The living will offers a way to prevent (or at
least limit) excessive spending in the patient's final phase of
life, by instructing surrogates not to undertake certain costly
treatments in circumstances where the benefits seem limited or where
life itself has become so diminished, painful, or unrewarding that
extending it seems undesirable.
Seventh, living wills can decrease the risk of litigation. Physicians
tend to welcome them not only as a guide to treatment but as a hedge
against legal liability, should things turn out badly or relatives
later regret what was decided. And prospective patients sometimes
also want to forfend possible legal battles among family members
who, when the time for treatment decision arrives, might disagree
strongly about the preferred course of action.
Finally—an indirect benefit—living wills can foster
necessary communication. The process of preparing and executing
a living will can be seen as a way to promote conversation among
loved ones and with doctors about one's values and preferences regarding
illness, medicine, and dying. Regardless of whether the explicit
directives contained in the document eventually guide the patient's
medical treatment, the mere exercise of preparing a living will
can encourage greater thoughtfulness and communication between the
patient, his family, and his doctor as to how he would like to be
cared for. Preparing a living will might be, for many people, the
first occasion to articulate for themselves and for those who might
care for them just how they would like their lives to end or how
they would like to be cared for until the end.
These aims and purposes invite two different kinds of questions:
First, how successful are instruction directives and living wills
in meeting their own goals? Second, are those goals and purposes
adequate to the task of caring well for those who cannot care for
themselves? In the two sections that follow, we address these questions
in some detail—first empirically, then ethically and philosophically.
IV. Living Wills in Practice: Evaluating Success and Failure
Enthusiasm for instruction directives and living wills, as we
have noted, has been widespread in many professional quarters. The
idea of the living will has been enthusiastically endorsed not only
by Congress and the courts, but also by state legislatures, the
Veteran's Administration, medical and legal associations, doctors,
lawyers, ethicists, and patient advocacy organizations. A much cited
1991 article in the New England Journal of Medicine, for
example, concluded that advance directives are desired by the great
majority of patients and by the public in general, and that they
can be easily completed in a 15 minute office visit with a physician.15
Advance instruction directives and living wills have been available
now for some decades, and enough evidence has begun to emerge to
permit a preliminary assessment of the success or failure of this
particular form of advance decision-making. A number of serious
problems have been documented that call into question whether living
wills or other instruction directives will ever achieve the goals
set out by their advocates, at least for the vast majority of patients.
1. Few people actually complete living wills.
Despite the widespread acclaim for the idea of living wills, and
despite more than thirty years of encouragement, studies show that
most Americans do not have one. While the rate of completion of
living wills did rise in the years right after the Cruzan
decision and the Patient Self-Determination Act (PSDA), there remains
a large gap between the number of Americans who claim to believe
that living wills are a good idea and the number of Americans who
actually have them. By 2001, despite more than a decade of efforts
under the PSDA to increase the number of people filling out advance
directives, the completion rate nationwide remained under 25 percent.16
Even the chronically or terminally ill do not seem to prepare living
wills in substantially higher numbers; one recent study suggested
that only about a third of dialysis patients had a living will,
even though most of them thought living wills "a good idea."17
In their review of the literature, Angela Fagerlin and Carl Schneider
point to a number of reasons why people fail to complete living
wills: Some people say they don't know enough about them; others
find them too difficult to execute; others simply procrastinate
or hesitate to discuss living wills with their doctors. Some people
doubt they need a living will; others think that living wills are
appropriate only for the elderly or infirm; many suspect that living
wills do not affect how patients are treated. Some people are content
to delegate decisions to family members, and some see living wills
as incompatible with their cultural traditions or ethical beliefs,
by putting too much emphasis on self-determination rather than solidarity
or by implying that disabled persons are better off untreated.18
The problem does not seem to be lack of information. Many studies
suggest that programs designed to increase people's awareness of
living wills do not appreciably increase the likelihood of their
Instead, people—including many who claim to believe that living
wills are a good idea—seem to have substantial reasons for
not completing a living will, and by and large they cannot be easily
persuaded to change their minds. One recent study suggests, in particular,
that most patients prefer not to put specific treatment preferences
in writing; and even when individuals complete instruction directives,
they typically prefer "to allow surrogate decision makers leeway
in decision making."20
It should be acknowledged that, under certain favorable conditions,
relatively close-knit communities have succeeded in considerably
raising the rate of completion of advance directives. The "Respecting
Your Choices" initiative established in La Crosse, Wisconsin
in 1993 was a large-scale education and implementation effort throughout
the community that featured training and education sessions, standardized
materials, and coordination between local hospitals and clinics
to ensure that directives would be available when needed and would
play a role in treatment decisions.21
A subsequent study reported that up to 85 percent of the targeted
patients had completed advance directives at the time of their deaths,
and of these, most were recent (the average date of completion was
a little more than a year before death), and 95 percent were available
to doctors when needed. Nearly all the patients involved felt they
had benefited from the process. Several other small, locally based
initiatives have shown similar success, but the possibility of generalizing
these efforts remains unknown.22
In 2004, Joan Teno and her colleagues reported on a 22-state survey
of bereaved family members which estimated that 71 percent of the
patients dying in these states had completed either a living will
or durable power of attorney, many of them doing so soon before
death. But the preponderance of evidence suggests that despite outreach
and education efforts to increase the writing of living wills, the
majority of Americans at present do not have them.23
2. People who complete living wills may not have
clear treatment preferences and may not fully comprehend the clinical
conditions they might face in the future.
Even when people are prepared to execute living wills, it is doubtful
whether they have clear and definite ideas about the treatment they
would want if and when they become incapacitated. There are, to
begin with, simply too many possible future situations that the
patient must try to imagine, each with its unique combination of
burdens, benefits, and risks, making the notion of "informed
consent" long in advance of treatment a highly questionable
one. And those patients who are tempted to reject certain kinds
of future medical intervention (on the ground that they "wouldn't
want to live like that") may not understand how short-term
use of some of the same interventions could restore them to basic
or even normal function. In many cases, people end up contradicting
themselves in the instructions they leave, or contradicting their
instructions when asked concurrently or subsequently what their
real preferences are. As Fagerlin and Schneider suggest, most people
find it difficult to accurately predict their preferences "for
an unspecifiable future confronted with unidentifiable maladies
with unpredictable treatments."24
Indeed, most people contemplating filling out a living will know
very little about the various illnesses and treatments that might
one day affect them, and they often rely for that information on
severely limited discussion with doctors. Moreover, studies suggest
that the specific preferences recorded in living wills depend a
great deal on how the questions are asked; people often change their
minds about what treatment they would want in any given scenario
when the illnesses and interventions are described differently.
Studies also suggest that patients' individual preferences are often
not very stable over time, meaning that a snapshot of those preferences
frozen in a living will may not accurately reflect a person's real
past preferences when a future decision needs to be made on his
behalf. A meta-analysis of several studies suggested that, over
periods as short as two years, almost a third of preferences for
life-sustaining treatment changed.25
Data from the Robert Wood Johnson SUPPORT study suggests that
many patients filling out living wills are confused about what they
are being asked to decide, and vague or misinformed about the purpose
and effectiveness of the medical interventions they are being asked
to choose among.26
More deeply, on such difficult life-and-death questions, patients
may simply not have clear and delineable preferences that they can
state authoritatively in advance. The healthy may incautiously prefer
death to disability, but then change their minds when they are actually
sick and find themselves on the precipice between life and death.
There is in fact an extensive body of research showing how poor
we are at predicting our own preferences and desires, especially
in regard to choices far off in the future.27
This inability is likely to be acutely present here, since we have
no experience deciding how and when to die.
3. The living wills people complete often fail
to convey treatment preferences clearly.
Living wills range from short questionnaires that give room for
only the most general answers, to elaborate charts that allow the
individual to check off which particular interventions he would
or would not want in a variety of possible circumstances, to lengthy
"values histories" designed to elicit the patient's overarching
beliefs and core values, from which others are supposed to infer
what medical treatment the patient would want if he ever becomes
incapacitated. The shorter living wills offer families and clinicians
very little specific guidance as to how to resolve actual treatment
dilemmas. It is not very helpful, for example, to be told merely
that the patient would prefer to forgo medical treatment "if
the burdens of treatment outweigh the expected benefits." The
more elaborate documents contain considerably more information about
how the patient would like to be treated in specific scenarios.
But unless the patient actually finds himself in one of the covered
scenarios, that information may not offer adequate guidance as to
how he should be treated. And given the complexity and particularity
of every real-life clinical case—often involving co-morbidities,
chronic conditions, novel treatment options, and complicated personal
narratives—it is unlikely that the imagined scenario fits
perfectly with the real-life one.28
There is a further complication. Studies show that patients, having
completed relatively precise living wills, are often ambivalent
about whether their written instructions should be followed.29
It is therefore questionable whether even the detailed living wills
people fill out can be considered reliable or decisive guides to
their actual treatment preferences.
Fagerlin and Schneider argue that the short questionnaires convey
too little specific information to be very useful, the elaborate
scenario-based charts overwhelm the patient with specifics that
he cannot comprehend, and the values histories, even if a patient
could be induced to complete one, would not provide much clear guidance
for health care decisions in concrete situations. As they conclude:
"The failure to devise workable forms is not a failure of effort
or intelligence. It is a consequence of attempting the impossible."30
4. The living wills people complete often do not
get transmitted to those making medical decisions.
Even if a person were to have his clear preferences inscribed
in a living will, in many cases the document itself or the information
contained therein will not actually reach the people responsible
for the incapacitated patient's medical care. A living will signed
years in advance may be misplaced or forgotten by the time it is
needed. Most patients do not give their living will to their physician;
and, even if they do, that physician may not be the one treating
the patient by the time he has become incapacitated. One study found
that, even when patients had completed living wills before being
hospitalized, their medical charts contained accurate information
about their directives only 26 percent of the time, and only 16
percent of the charts contained the actual form.31
One novel form of instruction directive has shown high rates of
compliance and effectiveness: Physician Orders for Life-Sustaining
Treatment (POLST). First developed a decade ago in Oregon and now
in use in fifteen other states as well,32
a POLST document (unlike a standard living will) takes the form
of a signed doctor's order; it is not completed by the patient,
but by a doctor or nurse-practitioner after consulting with the
patient or his surrogate. The POLST is a concise form containing
specific medical instructions that can be acted on immediately by
nurses, doctors, or emergency personnel; it may include "do
not resuscitate" and "comfort measures only" orders,
and it may indicate whether to administer CPR (cardio-pulmonary
resuscitation), antibiotics, intravenous fluids, feeding tubes,
artificial respiration, and other medical interventions. Unlike
the living will, the POLST governs medical issues that are considered
very likely to arise in the near term. According to its developers,
it is really only suitable for those expecting to die within the
5. Even when they are transmitted to the medical
decisionmakers, living wills often have little effect on surrogate
decisionmaking and little impact on the care incompetent patients
A recent study by Peter Ditto and colleagues set out to assess
whether instruction directives or living wills are effective in
improving the accuracy of surrogate decision-making.34
An experiment was performed involving competent outpatients aged
65 or older and their preferred surrogate decisionmakers (mostly
spouses or children). All the patients completed a questionnaire
asking whether they would want any of four life-sustaining medical
treatments in nine different illness scenarios. Subjects in two
experimental groups filled out scenario-based instruction directives
and subjects in two other experimental groups filled out values-based
instruction directives. Subjects in the control group filled out
no advance directive at all. The surrogates were then divided into
five corresponding groups: In the control group, the surrogates
were asked to predict the patient's preferences for the life-sustaining
medical treatments in each of the illness scenarios without the
benefit of an advance instruction directive. In the four experimental
groups, surrogates made such predictions after reviewing the patient's
scenario-based or value-based written directive. Surrogates in two
of the experimental groups also discussed the contents of the directive
with the patient. The researchers then measured the accuracy of
surrogate judgment in the various groups, by comparing the predicted
preference with the preference actually expressed by the patient.
Strikingly, what the researchers found in this study was that,
compared to the control group, none of the interventions
produced significant improvement in the accuracy of the surrogates'
judgment in any illness scenario or for any medical
treatment. When spouses or children of elderly patients made surrogate
"decisions" about medical treatment based only
on their familiarity with the patient, their judgments were just
as accurate as that of spouses and children who had read or read
and discussed a detailed living will drawn up by the patient. In
all five groups, the accuracy of surrogate decision-making was found
to be about 70 percent.
In a companion study, some of the same researchers examined the
effectiveness of instruction directives in improving the accuracy
with which physicians could predict the treatment preferences
of their older patients.35
What they found was that (a) family members generally predict patient
preferences more accurately than physicians; (b) the accuracy of
predictions by the patient's primary care physician (that is, a
doctor who knows the patient) was not significantly improved by
reading either a values-based or scenario-based living will; but
(c) hospital-based physicians (that is, doctors unfamiliar with
the patient) could make more accurate predictions in certain scenarios
if they had read the patient's scenario-based living will.
These studies call into question whether living wills are likely
to have a significant impact on the medical care received by an
incompetent patient, at least in cases where surrogate decisions
are made either by relatives of the patient or by physicians who
know the patient. This conclusion is borne out by several studies
cited by Fagerlin and Schneider, such as one completed in 1998 by
Martin Goodman and colleagues,36
which concluded both that "few critically ill seniors have
advance directives" and that "the level of care delivered
to elderly ICU [intensive care unit] patients is not affected by
the presence or absence of advance directive statements." Another
study suggests that, in roughly three out of four cases, "previously
executed advance directives are not accessible when patients are
admitted to hospitals for acute illness";37
and yet another study gives evidence that incompetent patients frequently
receive care that is inconsistent with their living will.38
In a recent study, Howard Degenholtz and colleagues found that
completing a living will was in fact associated with a lower rate
of in-hospital deaths, perhaps suggesting that living wills are
effective at communicating patients' preferences regarding life-sustaining
But, as Joan Teno has pointed out, the mere correlation between
having a living will and dying outside the hospital setting does
not suffice to prove that the use of living wills causes
a lower rate of hospitalization. It could simply mean that those
who complete living wills have, on average, a stronger preference
for dying at home than those who do not. Teno's own research suggests
that, the increased prevalence of advance directives notwithstanding,
bereaved family members report many problems with the end-of-life
institutional care received by their loved ones.40
6. The side-benefits of preparing living wills are uncertain.
Over the years, responses to these general criticisms of living
wills have yielded some alternative arguments in their defense.
Supporters of living wills, conceding some of the limitations, argue
that in particular cases, they remain appropriate and useful.
For example, for competent people about to undergo risky medical
procedures, living wills may serve as effective treatment guides.
Or, for people who lack close friends or relations to whom they
can entrust decision-making power, living wills offer an alternative
to what might otherwise be impersonal and unsympathetic care. But
advocates also argue that, even in cases in which the living will
has no impact on treatment decisions, filling one out is a useful
way to get people thinking and talking about end-of-life treatment
preferences. Such conversations, they contend, may help doctors
and proxy decisionmakers later on when they are asked to make decisions
on the patient's behalf.
Living wills are also said to provide a measure of comfort to
patients and their surrogates, whether or not their instructions
are followed. Their existence can bolster the patient's confidence
that his wishes will be followed and relieve some of the stress
and misery that beset family members compelled to make decisions
about withdrawing life-support from a loved one. Even if the living
will does not actually ensure that the patient's preferences are
accurately carried out, so advocates claim, its mere existence can
help make the burdens of end-of-life care more bearable for all
Needless to say, some of these alleged benefits are hard to measure.
We know of little empirical research that either supports or undermines
those claims regarding dementia patients.41
Besides, living wills might give much less comfort if people understood
how ineffective they generally are in accomplishing their other
V. Conceptual and Moral Limits of Choosing in Advance
In the previous section we considered a growing body of empirical
evidence suggesting that living wills are encumbered with a host
of practical problems that severely limit their capacity to realize
the goals they were designed to achieve. Some of the practical problems
could perhaps be mitigated by improved procedures: for example,
longer doctor-patient consultations could be mandated, living wills
could be updated more frequently, and so forth. But, in light of
the many obstacles, there is little evidence that improved procedures
of this sort would measurably enhance the effectiveness of the living
will program. The practical value of living wills for the general
population would seem to remain highly doubtful, even if we accepted
the general principle behind them: the notion that individuals can
decide long in advance (as able-bodied and competent persons) what
is best for them if and when they become disabled and incompetent.
But that principle is itself open to question, even apart from the
practical problems. There are more fundamental difficulties with
living wills—conceptual and ethical—that cannot be overcome
by merely procedural changes.
As we have seen, one of the central goals of the living will is
to preserve for the incapacitated patient the same measure of autonomy,
self-determination, and freedom of choice that he or she enjoyed
while still competent. The living will is based on an attractive
idea: that the right of privacy in one's own body—a right
from which it follows that no patient should be subjected to medical
treatment without his consent—ought to be respected even when
the patient is no longer in a position to articulate his preferences.
The living will aims to extend "informed consent" into
the future by allowing the individual to articulate his values and
wishes in the present. But there are serious reasons to doubt the
wisdom of treating patient autonomy as the crucial guide for making
end-of-life care decisions for patients who are, in fact, no longer
autonomous but absolutely dependent on others for their care.
A.The Problem of "Informed Consent"
The living will, as distinguished from the durable power of attorney,
binds a currently incompetent patient to limitations he imposed
on himself in the past, when he was not able to take into account
all the particular circumstances of his present situation. In the
most detailed instruction directives, the person presumes to understand
the personal and clinical details of an unforeseeable future, and
in some cases the healthy self aims rather explicitly to decide
whether life in a future diminished state is worth sustaining. But
it is hard to see how prudent judgment and informed consent can
operate so far removed from the real-life case in all its fine human
detail and medical complexity.
This problem is especially clear in those cases in which a living
will written long ago requests that particular treatments be withheld
that could benefit the patient here-and-now. In such cases, to honor
the patient's "autonomy" by carrying out his wishes as
stated in his living will may actually be harmful rather than beneficial
to the present patient. And since the incapacitated patient is unable
to revise his preferences in light of vital new information, it
is questionable whether carrying out his written instructions is
really an exercise of informed consent at all. Informed consent
usually means an agreement made in particular cases in light of
current knowledge and well-understood facts. But for incompetent
persons, informed consent is always impossible: the patient cannot
understand the choices available or the knowledge needed to make
them. To claim that the living will extends the right of free choice
and self-determination to those who can no longer make informed
choices seems like an illusory quest, since the written "choices"
are imposed on individuals who are no longer free to change their
It would seem reasonable, in such cases, that those making treatment
decisions on behalf of the incapacitated patient should be able
to revise or supersede the instructions recorded in the living will,
in light of new information unavailable at the time the living will
was executed. But then the question becomes: By what standard should
the surrogate's judgment be governed when he departs from the patient's
explicit instructions? Should the surrogate attempt to conjecture
what the incapacitated patient would have wanted, had he known what
new circumstances would arise? Or should the surrogate give up on
such speculations and simply be guided by a sense of what would
constitute the best possible care for the patient here-and-now?
These are surely hard questions, requiring substantive
ethical judgments about what being a "benefit" to those
entrusted in our care really means. The doctrine of "informed
consent" is not a sufficient guide to the perplexities and
obligations of ethical caregiving, and a person's prior wishes,
even when clearly expressed, should not be the only relevant
factor in making caregiving decisions. We need to think foremost
about the patient's present welfare, and about our own role as moral
agents making life-and-death decisions for others.
B.Prior Wishes and Present Welfare
A challenging illustration of the dilemmas involved in caring
for incapacitated patients can be found in an account by Andrew
Firlik of an Alzheimer's patient he called Margo, whom he described
as "pleasantly demented."42
Firlik, a medical student, visited Margo regularly, and she was
cheerful and pleased to see him but never knew his name. Margo enjoyed
reading but "her place in the book jumped randomly from
day to day." She enjoyed music, seemingly unaware that she
was listening to the same song over and over. She enjoyed painting,
but always painted the same simple pastel shapes day after day.
Firlik eventually concluded that, "despite her illness, or
maybe somehow because of it, Margo is undeniably one of the happiest
people I have ever known":
There is something graceful about the degeneration
her mind is undergoing, leaving her carefree, always
cheerful. Do her problems, whatever she may perceive
them to be, simply fail to make it to the worry centers
of her brain? How does Margo maintain her sense of self? When
a person can no longer accumulate new memories as the old rapidly
fade, what remains? Who is Margo?43
Using this account of life with dementia, both Ronald Dworkin44
and Rebecca Dresser45
ask us to imagine the following scenario: Suppose that Margo executed
a living will when she was first diagnosed with Alzheimer's, asking
that no treatment be given to her if she contracted another serious
life-threatening illness. Now Margo contracts pneumonia, which could
probably be ameliorated with antibiotic treatment. Should her living
will be honored and the antibiotics withheld? Or does her present
contentment make her continued life worthwhile and override her
past misgivings about living with dementia?
Cases like this raise the most profound questions about how much
it is given to us to control or orchestrate the shape of our lives
in advance, and whether we always possess the wisdom or authority
to dictate what is best for a future self. Defenders of the principle
of autonomy will argue that we have a right, if we wish, to escape
dying under circumstances that are inconsistent with the character
of the lives we chose to live. They argue, with Dworkin, that people
"want their deaths, if possible, to express and in that way
vividly to confirm the values most important to their lives."
This means allowing individuals to decide, by means of living wills,
whether life-sustaining medical interventions should be abandoned
when one becomes mentally incapacitated. Dworkin suggests that it
would be an "unacceptable form of moral paternalism" to
disregard a patient's written instructions on the ground that he
or she still derives some benefit from life in a diminished state.
In Dworkin's terms, the patient's "critical interests"
(her long-term desire to lead a life of "integrity" and
"coherent narrative structure") outweigh her "experiential
interests" (her apparent enjoyment of life with dementia).
Certainly many of us, contemplating the prospect of disability
or dementia from the perspective of vigorous physical and mental
health, are tempted to reject with horror the possibility of a lengthy
period of mental and physical incapacity at the end of our lives.
Yet, as we have seen, patients who complete living wills sometimes
do so without full awareness of what life would be like in all the
various circumstances that might arise. They do not and cannot know
in advance whether the experience of old age with dementia will
still seem valuable to a future self, even though it is not the
life they would freely choose. Can individuals really know in advance
that such a life would be worse than death? And, more fundamentally,
do we possess a present right to discriminate against the very life
of a future self, or—even more problematic—to order
others to do so on our behalf?
Giving absolute priority to a patient's earlier choices in such
cases may seem injurious to the patient in his or her current state;
and the significant possibility that a living will was executed
without full and necessary knowledge means it lacks the moral weight
of an autonomous and contemporaneous choice. Moreover, as Rebecca
Dresser has put it, "A policy of absolute adherence to advance
directives means that we deny people like Margo the freedom we enjoy
as competent people to change our decisions that conflict with our
subsequent experiential interests."46
A person's prior wishes and instructions surely count in any judgment
about providing care. Simply ignoring the patient's written instructions
would give too little regard to the person's former beliefs about
the shape and character of a good life. But giving those wishes
trumping power may force caregivers to forgo doing what is best
for the person who is now entrusted to their care; as moral agents
themselves, caregivers cannot simply do what they were told but
must also try to do what is best. Margo's apparent happiness would
seem to make the argument for overriding the living will morally
compelling in this particular case.
But we also need to think about what to do for those patients
with dementia who are not quite so happy, whose lives seem filled
with difficulty and distress. Does a person's claim on us for treatment,
even if she has a living will requesting that treatment be forgone,
depend entirely or primarily on the person's experiential well-being?
Or are there also "interests" that are not critical or
experiential but ontological—the interest of a living person
in being alive, in being cared for as an equal member of the community,
even in a profoundly diminished and often unhappy condition? These
larger considerations take us beyond autonomy to consider the meaning
of human dependence and, in our case, the meaning of being a caregiver
(and care-receiver) for persons with grave disabilities and advanced
dementia. It forces us to ask: Who is this person with dementia
now before us, and what do we owe her even or especially when her
life seems so diminished?
C. Personal Identity and the Obligations of
How we care for Margo—or any person with dementia, with
or without a living will—will depend in great measure on how
we see her identity: Is she the same person she was when competent,
with the same rights and interests? Or is she a quite different
person, with possibly different rights and interests? Philosophically
puzzling as it is, we are probably inclined in different moments
to answer "yes" to each of these questions.
One way to think of Margo as still the same person is to focus
on the rational will—on the person as one who deliberates
and chooses. If Margo is the same person she was, and if twenty
years ago she chose to enact certain directives about her future
care, then one might argue that those directives should now be honored,
even if they no longer seem to further the care she most needs.
Yet this way of picturing her as the same person over time seems,
actually, to ignore the significance of time. Instead, it focuses
on a single moment in Margo's existence—the moment her living
will was enacted—and gives it governance over all future moments.
As her capacity to choose diminishes, she can no longer change her
instructions; she is stuck forever in that timeless point that is
her earlier choice.
If we find this puzzling, as well we might, and if we doubt that
Margo's instructions from twenty years ago are really the best guide
to the care she now needs, we may be tempted to say that she is
no longer the same person. It may seem that the only way to get
out from under the tyranny of that timeless moment of choice is
to say, however paradoxically, that she is now someone different—a
new person with different needs, ways, and satisfactions. We can
understand the attractiveness of such a position; for it does, at
least, free us to care for Margo in a way that genuinely serves
what are now her best interests. It takes seriously both the person
she now is and the obligations we have to her.
Understandable as this perspective may be, perhaps it is possible
to affirm her continuity of identity over time, yet to do so in
a way that allows us to take seriously her previously expressed
wishes without giving them trumping power. Margo is still the same
person she once was because the body—the fact that human beings
have and are bodies—is so important to our understanding of
personal identity. Throughout life—both in times when our
reason and will are fully developed and active, and in times when
they are undeveloped or quiescent—we are physically present
in embodied form as the unity of body and psyche. This is true even
(as in the case of dementia) when our reason and will have been
compromised by disease. It is this continuing bodily presence that
is fundamental to being human and that is the locus of all personal
presence. Those who embraced or held her hand years ago and who
do so again today are sure that they are embracing Margo.
From this perspective, therefore, we want to affirm that Margo
remains one and the same person, even as she slides ever deeper
into dementia. That helps us understand why, of course, we would
not want to ignore preferences she had expressed earlier in lifeviii—or,
more important, the character she had developed over time and the
things she had cared about. We should respect these central aspects
of her person and her story, even if they are not always decisive
for the care we think best for her when she is afflicted with dementia.
But although she is still the same person, she is also greatly
changed; for one of the truths about embodied beings is that they
change over time. The body may reach an optimal moment when reason
and will are at their height, but it is also characterized by beginnings
and decline—by change, development, and decay. What Dworkin
terms our "critical" interests, important as they are
to all of us, are themselves only part of that story of the person's
development. We would do less than justice to the person Margo is—an
embodied person who grows, flourishes, and declines in time—were
we to designate one moment as the decisive moment for all decisions
about her care, as if an instruction directive enacted twenty years
earlier could be an adequate expression of her needs and desires
here and now.
There is, of course, another way out of this identity conundrum.
We could say that Margo was once a person but is no longer. This
would not so much solve as dissolve the problem; for it would suggest
that no "person" is present any longer in the bodies
of those stricken by dementia, that Margo's living body is simply
the corpse in which the real Margo once lived. To take this course,
as some have done in recent years, would involve a radical transformation
in our civilization's understanding of what it means to be human.
It would sanctify reason and will (and qualities such as consciousness
and self-awareness) as the qualities which, alone, give one
membership in the community of care. It is far better, we think,
to take seriously the truth that, whatever else they may be, human
beings are embodied beings in time. Each person's life is a story
marked at first largely by potential of what is yet to come, then
by flourishing of the organism's most characteristic capacities,
and finally by decline. But none of these moments in the story is
the person. On the contrary, the person is simply the one whose
story it is.
What began in this chapter as an attempt to trace our society's
search for a largely procedural solution to the problem of caring
for those who become incapacitated—a solution that respects
patients' wishes and prevents mistreatment by others—has led
us to realize that procedural solutions cannot free us from hard
philosophical and ethical questions. Indeed, we need to cultivate
in ourselves a deeper sense of our solidarity in body and in time—a
richer sense of what it means to be dependent on others and to care
for those who can no longer make choices for themselves.
The depiction of identity that we have given—of personal
identity as continuous throughout the trajectory of the body's life,
but of a continuity that incorporates countless changes—does
not provide concrete answers to any of the difficult treatment decisions
that caregivers must make when caring for dwindling patients. A
great deal will always depend on the clinical and personal particulars
of each case, and much of this cannot be fully anticipated in advance.
But this understanding of the human person does suggest two insights
that should guide the ethical reflections that follow. First, those
who have lost some characteristically human cognitive capacities
are still human beings with identities and still worthy of our
care. Second, however much we understandably cling to our autonomy
and dread our decline, dependency is very often part of the normal
course of human life.
In the end, living wills can never relieve us of the responsibility
we have to care for one another as best we can, even in difficult
circumstances such as those dementia creates. Nor should we want
such relief from responsibility; for our aim is not simply to execute
instructions given us, but to develop a true ethic of caregiving.
Writing a living will requires facing up to the possibility of decline,
debility, and death, but it does so by seeking to exert more self-mastery
than may be possible at a time of life when accepting limits and
trusting others are often the virtues most needed. In the very effort
to spare loved ones the excessive burdens of care, we may send a
message that we do not trust them enough to put ourselves in their
Of course, trusting others requires the presence of others who
are trustworthy—surrogates who are willing to care, able to
make wise decisions, and willing to let go when the time comes to
do so. The comparative virtue of proxy directives is that
they embody such trust, even if they do not, in themselves, provide
ethical guidance about what to do in the face of those dilemmas
that devoted proxies ultimately face. And the comparative virtue
of advance care planning, as distinct from the more narrowly
focused living will, is that it invites individuals and families
to face up to the dependencies of the future without necessarily
dictating every medical decision. At its best, such planning aims
instead at being better prepared for the unknown dilemmas ahead.
In our final section, we look beyond living wills to examine, briefly,
these other ways of thinking in advance, so that we might understand
their genuine virtues and inherent limits.
VI. Beyond Living Wills: The Wisdom and Limits of
Proxy Directives and Advance Care Planning
The proxy directive does not ignore the significance of our desire
to participate (in advance) in shaping treatment decisions made
for us at a time in the future when we can no longer participate
concurrently. Precisely by naming someone to serve as our proxy,
we take that desire seriously. At the same time, however, this approach
emphasizes less the importance of self-determination and correspondingly
more the importance of solidarity and interdependence. It invites
us to move toward our final days and years not in a spirit that
isolates our free decisions from the networks of those who love
and care for us but, instead, in a spirit that entrusts our dying
to those who have supported us in our living. It enlists them to
stay by our side, to the very end.
In this way, the proxy directive is more in accord with our ideals
of family and community life than is the instruction directive.
Indeed, if we try too hard to solve all problems in advance by stipulating
directions for our care, we may cut off the family discussion that
is needed when difficult caregiving decisions must be made. It is
precisely such discussion that forces us all to take seriously the
continued presence of a loved one who is no longer able to participate
in decision-making. The very activity of seeking the best possible
care pushes us all toward deepened understanding and concern. This
does mean, of course, that a proxy directive places greater burdens
on family members than does an instruction directive (one of whose
aims, as we have seen, is precisely to relieve family members of
such stressful burdens). But to care about one's family is to accept
such burdens, and we may well wonder whether families would really
be better off without the trials of fidelity that aging and dying
often present, or whether we would want to live in families if families
did not need to care.
To be sure, there are some, especially the very elderly, who may
have no family or who may outlive all their obvious proxy choices.
And there may be others who, because their family has been a source
of pain rather than support, may feel unable to entrust themselves
to the care of a family member. In some of these cases a living
will may seem the better course to take. But such cases should also
spur us all to consider more seriously how to expand the boundaries
of communal solidarity—recapturing, for instance, the deep
significance of friendship, or finding in community or religious
institutions others to whom we can entrust decisions about our care.
We should not too readily acquiesce in a vision that isolates us
in the time of our dependency, or a vision that rests on the false
notion that individuals can precisely determine and manage every
fact of their lives until the very end.
The limits of controlling one's own future does not mean that
individuals and families should not plan for the future together.
The shortcomings of living wills should not obscure the real advantages,
both to the patient and to his family, of thinking ahead about some
of the dilemmas that might arise as one's capacities diminish, through
conversation and prudent planning before an illness like dementia
takes its course. Such conversation might focus not so much on the
specific medical treatments a patient would or would not want as
on other aspects of aging and dying that might matter even more
to the person: for example, being steadily cared for during the
long period of illness, having the company of one's family and friends
at the end, making peace with God, having a chance to say good-bye
to a particular person, dying in a quiet and dignified setting,
sparing one's family additional anguish, and other considerations
not strictly medical. Is the patient concerned more about pain at
the end of life or about loneliness? About mental deterioration
or about physical dependency? What are his deepest fears, what are
her fondest hopes? Knowing how the person feels about these matters,
at a stage of life when true collaboration is still possible, can
give both guidance and comfort to family members who must eventually
make wrenching decisions for the patient, including in many cases
the decision to stop treatment and accept death.
Such conversations do not make the decisions, of course, but enrich
the perspective of the decisionmakers. For in the end, the best
laid plans always require devoted and prudent caregivers, who know
what it means to benefit the lives of those in their care, and who
possess the character to care well even in the darkest times. Ethical
caregiving, in all its aspects, is the order of the day. It is therefore
also the subject of the remainder of this report.
L., "Due Process of Euthanasia: The Living Will, a Proposal,"
44 Indiana Law Journal 539, 1969.
Health & Safety Code sec. 7186 (West 1976) (repealed 2000).
re Quinlan, 355 A. 2d 647 (N.J. 1976).
4. For detailed
information on state laws, see Meisel, A. and Cerminara, K., The
Right to Die: The Law of End-of-Life Decisionmaking.
(3d ed.) New York: Aspen Publishers, 2004 (Supp. 2005).
5. 42 U.S. Code
Service sections 1395i-3, 1395l, 1395cc, 1395bbb (2005).
8. See, for example,
McKay v. Bergstedt, 801 P.2d 617 (1990).
9. Dresser, R.
and Robertson, J., "Quality of Life and Nontreatment Decisions:
A Critique of the Orthodox Approach," 17 Law, Medicine
and Health Care 234, 1989.
A., and Brock, D., Deciding for Others: The Ethics of Surrogate
Decision Making, New York: Cambridge University Press, 1989.
12. 486 A. 2d
1209 (N.J. 1985).
R., " Schiavo's Legacy: The Need for an Objective Standard,"
Hastings Center Report 35(3): 20-22, 2005.
R., Life's Dominion: An Argument About Abortion, Euthanasia,
and Individual Freedom, New York: Knopf, 1993, p. 211.
L. L., et al., "Advance Directives for Medical Care—A
Case for Greater Use," New England Journal of Medicine
324: 889-895, 1991.
16. Eiser, A.
R., and Weiss, M. D., "The Underachieving Advance Directive:
Recommendations for Increasing Advance Directive Completion,"
American Journal of Bioethics 1: W10, 2001.
J. L., et al., "Factors Influencing Dialysis Patients' Completion
of Advance Directives," American Journal of Kidney Disease
30: 356-360, 1997.
A., and Schneider, C. E., "Enough: The Failure of the Living
Will," Hastings Center Report 34(2): 30-42, 2004.
19. Eiser, A.
R., and Weiss M. D., op. cit.
N. A., et al., "Micromanaging Death: Process Preferences,
Values, and Goals in End-of-Life Medical Decision Making,"
Gerontologist 45: 107-117, 2005.
B. J. and Rooney, B. L., "Death and End-of-Life Planning
in One Midwestern Community," Archives of Internal Medicine
158: 383-390, 1998.
22. Garas, N.,
et al., AHRQ Evidence Reports. Chapter 49. Health Services
Technology/Assessment Texts. Available online at http://www.ncbi.nlm.nih.gov/
books/bv.fcgi?rid=hstat1.section.62397 (accessed September 5,
23. See Teno,
J. "Advance Directives: Time to Move On," Annals
of Internal Medicine 141: 159-160, 2004; Teno J. et al., "Family
Perspectives on End of Life Care," Journal of the American
Medical Association 291: 88-93, 2004.
A., and Schneider, C. E., "Enough," p. 33.
26. Teno, J.,
et al., "Do Advance Directives Provide Instructions That
Direct Care?" Journal of the American Geriatric Society
45: 508-512, 1997. These researchers found directives from 569
patients out of 4804; few of those contained any instructions
and some of the ones with instructions showed clear lack of understanding.
28. Brett, A.
S., "Limitations of Listing Specific Medical Interventions
in Advance Directives," Journal of the American Medical
Association 266: 825-828, 1991.
A., "How Strictly Do Dialysis Patients Want Their Advance
Directives Followed?" Journal of the American Medical
Association 267(1): 59-63, 1992.
A., and Schneider, C. E., "Enough," p. 35.
R. S., et al., "The Inaccessibility of Advance Directives
on Transfer from Ambulatory to Acute Care Settings," Journal
of the American Medical Association 274: 501-503, 1995.
32. For information
about POLST, see http://www.polst.org, a website sponsored by
the Oregon Health Sciences University's Center for Ethics in Healthcare.
Tolle helped design the POLST form. 'A POLST form is not for every
adult. A POLST form is for someone who their doctor wouldn't be
surprised if they died in the coming year.'" Quoted in "A
Different Kind of Living Will," Ivanhoe Broadcast News, June
27, 2005. Available online at http:// www.ivanhoe.com/channels/p_channelstory.cfm?storyid=11510
(accessed September 5, 2005).
34. Ditto, P.
H., et al., "Advance Directives as Acts of Communication:
A Randomized Controlled Trial," Archives of Internal Medicine
161: 421-430, 2001.
K. M., et al., "Accuracy of Primary Care and Hospital-Based
Physicians' Predictions of Elderly Outpatients' Treatment Preferences
With and Without Advance Directives," Archives of Internal
Medicine 161: 431-440, 2001.
M. D., et al., "Effect of Advance Directives on the Management
of Elderly Critically Ill Patients," Critical Care Medicine
26: 701-704, 1998.
R. S., et al., op. cit.
38. Danis, M.,
et al., "A Prospective Study of Advance Directives for Life-Sustaining
Care," New England Journal of Medicine 324(13): 882-888,
H. B., et al., "Brief Communication: The Relationship Between
Having a Living Will and Dying in Place," Annals of Internal
Medicine 141: 113-117, 2004.
40. Teno, J.
et al., "Family Perspectives on End-of-Life-Care at the Last
Place of Care" Journal of the American Medical Association
291: 88-93, 2004. The authors conclude that "many people
dying in institutions have unmet needs for symptom amelioration,
physician communication, emotional support, and being treated
41. But see
Martin, D. K., et al., "A New Model of Advance Care Planning:
Observations from People with HIV," Archives of Internal
Medicine 159: 86-92, 1999. This study presents some evidence
that advance care planning helped people prepare for death.
A.D., "Margo's Logo" (letter), Journal of the American
Medical Association 265: 201, 1991.
R., Life's Dominion, pp. 221-222.
45. Dresser, R.
"Dworkin on Dementia: Elegant Theory, Questionable Policy,"
Hastings Center Report 25(6): 32-38, 1995.
46. Ibid., p. 35.
wills," about which we will speak at length, are a formal
kind of advance instruction directive in which treatment preferences
and instructions are put in writing.
ii. A list of
these works appears in the Thematic Bibliography in the Appendix.
We rely especially on two essays: one by Angela Fagerlin and
Carl Schneider, "Enough: The Failure of the Living Will,"
Hastings Center Report 34(2), March-April 2004, pp. 30-42,
the other by Council Member Rebecca Dresser, "Precommitment:
A Misguided Strategy for Securing Death with Dignity,"
81 Texas Law Review 1823, June 2003. We rely also on
Prof. Schneider's presentation to the Council on this topic,
December 2, 2004 (transcript available online at http://www.bioethics.gov).
iii. Other terms
that have been used in court cases regarding end-of-life decisions
for incompetent persons, "substituted judgment" and
"best interests" standards, will be defined and discussed
in the next section.
iv. As it turned
out and as some experts predicted in advance, Karen Ann Quinlan
lived another 10 years after the "life-sustaining"
respirator was removed, breathing on her own.
v. At a later
probate court hearing, witnesses offered more evidence on Cruzan's
previous statements and the judge ordered the feeding tube removed.
courts and experts have introduced their own variations and
refinements on these terms—such as the "limited-objective
standard" and the "pure-objective standard,"
used in the Conroy case discussed below. In the end,
however, the crucial distinction is between trying to discern
what the person would want if the competent self of the past
could speak and trying to do what is best for the incapacitated
patient here-and-now. In some cases, these two standards of
care lead to similar conclusions; in other cases, there is tension
and ambiguity, resulting from different interpretations of a
patient's real wishes in the past and different judgments about
a patient's real interests in the present.
as the POLST form is focused on decisionmaking in the short
term, it cannot be regarded (and is not presented by its sponsors)
as a living will in the full sense, viz., a set of instructions
that a competent patient can fill out well before the time when
he might suffer mental incapacitation. Moreover, the animating
idea of the POLST program does not seem an appropriate principle
for the prudent use of living wills: the POLST document was
designed in the belief that, to be most effective, an instruction
directive should be conveyed with the patient everywhere he
goes in a simple, standardized form, already signed by a doctor,
and capable of being implemented at once by any clinician who
encounters it. Yet a living will that is so "effective"
in this sense might well be too effective, too easy to
act on quickly, when the family might wish to make care decisions
more deliberately, in light of changing circumstances and new
information. See the exchange of letters between Susan
E. Hickman, et al., and Angela Fagerlin and Carl Schneider,
"A Viable Alternative to Traditional Living Wills: A Response
to 'Enough: The Failure of the Living Will,'" Hastings
Center Report (Letters to the Editor) 34(5): 4-6, 2004.
viii. If, as
some people speaking loosely allege, Margo is an altogether
different person, then Margo's earlier living will should be
regarded as irrelevant to the care of her "replacement."
Worse, on this theory of altered identity, to refuse treatment
for the "new person" solely because Margo so instructed
us years ago would be culpable negligence.