TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY
Table of Contents
The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov
The Ethics of Caregiving: General Principles
Chapter 3
In the years ahead, the challenges of caring well for elderly persons-including
and especially those suffering from debility and dementia-will become
more apparent and more urgent. As Chapter 1 suggested, we may face
a genuine caregiving crisis-with more needy individuals and fewer
available caregivers, with growing costs of long-term care and fewer
workers to support social programs, with longer periods of diminished
function and the ever-present temptation to neglect or abandon those
in need of constant attention. Looking ahead, it is thus incumbent
upon us to ask: What constitutes good care, what makes it possible,
and how can we become or support good caregivers?
In a certain sense, the answer is obvious: good care is possible
when there are people willing to care, able to care, and having
resources to care. Good care is possible when family members and
friends make the sacrifices necessary to be caregivers, when health
care professionals and social workers tend to the real needs of
their patients, and when society does not leave families to fend
entirely for themselves. But the obligations of caregiving often
confront us with some hard human questions: What does good care
require in the face of worsening physical and mental deterioration?
What is the relationship between good care and a good death? What
should we do when the duties of caring for our father or mother
with dementia make it much harder to care for our young children?
What moral aims and ethical principles should guide caregivers-in-action?
The following analysis attempts to address these questions in
some detail, in an effort to offer guidance to families, doctors,
and policymakers striving to care well for vulnerable persons as
they approach the end of life. In this chapter we take up general
ethical considerations, looking for principles and guidelines; in
the next chapter we consider concrete cases, looking to display
ethical caregiving in action. We will pay primary attention to the
ethical dilemmas of caring for persons with dementia, and especially
to the wrenching decisions about life-sustaining treatment that
arise at the bedside when persons with dementia get sick in other
ways.
Before turning to the ethics of caregiving, we need to make sure
that we understand who the caregivers are and that we recognize
the many social, economic, and institutional factors
that dictate whether good care is truly possible. Although the Council's
special responsibility requires us to develop sound ethical analysis
and evaluation, we recognize the limited value of such ethical reflection
in the absence of adequate caregiving institutions and devoted caregivers
with the character and resources to stay the course.
For many aging persons, and notwithstanding the many changes in
the American family over the past few decades, family is still the
primary home of care and caregiving. Most men and women who marry
still take an oath of fidelity to care for one another "in sickness
and in health, for better and for worse." Such fidelity-not only
between spouses, but between parents and children-has surely been
tested in the modern world: by divorce, geographical separation,
smaller families, and a culture that often does not value caregiving
as much as other pursuits and occupations. Often, in families, no
one is willing, able, or available to care; and many people, by
the time they reach old age, have no family at all. Moreover, even
within the most devoted families, there are often disagreements
about what best care requires for a person in need, or about who
should shoulder which caregiving responsibilities. But despite all
the challenges faced by and within families, the family remains
the anchor of caregiving for most elderly persons, who age and die
as members of families.
Family caregivers cannot care well in isolation, however. Without
the support of community institutions and social programs, even
the most devoted family caregivers often face burdens too great
to be shouldered alone; they want to stand with their dependent
loved ones, but they often cannot stand by themselves. Such community
and social support can take many forms: government funded or faith-based
"respite care" programs that give caregivers a needed rest; federal
laws that protect caregivers who leave work temporarily to care
for a dependent family member; state programs that support a flexible
menu of long-term care options, including intermediate options like
elder day-care and in-home nursing. Without the support of community
and society, even the most devoted caregivers can break under the
weight of their task, with all its physical, psychological, and
economic demands. And even the most ethical caregivers can contemplate
less-than-ethical actions, often out of understandable desperation.
Of course, every society is both imperfect and limited: it never
treats everyone as well or as fairly as it should, and it must balance
many civic goods and obligations. But in no small measure, the kind
of society we are will be measured in the years ahead by how well
(or how poorly) we care for those elderly persons who cannot care
for themselves; by whether we support the caregivers who devote
themselves to this noble task; and by whether we sustain a social
world in which people age and die in humanly fitting ways-always
cared for until the end, never abandoned in their days of greatest
need.
This will require the creation and preservation of good caregiving
institutions. We will need reliable and decent professional caregivers;
humane design of long-term care institutions, preserving as much
as possible some of the warmth and comfort of home; effective coordination
of long-term care with hospitals, rehabilitation centers, and faith-based
or spirit-sustaining communities. Building and preserving good institutions
requires valuing those who make them good-not only the doctors who
treat dementia patients, but also the nurses who provide daily care,
the social workers who explain and coordinate services, and the
nurse's aides who clean up after incontinent residents. Much caregiving
involves hard physical work; it involves being sensitive to the
needs of people who often cannot make themselves understood; it
involves many tasks that individuals would not likely choose for
themselves, even if they perform them with great equanimity. If
we want good caregivers, we need to honor and reward caregiving,
rather than seeing it as unskilled or undignified labor. This is
a moral challenge as well as a social and economic one.
Good will and good character alone do not make willing caregivers
into good caregivers, however. Competence also matters a great deal-not
only for doctors, nurses, and other caregiving professionals, but
also for volunteer family caregivers who must learn how to care
well in matters small and large. It requires learning how to prevent
bedsores; how to bathe frail and often resistant individuals without
causing accidents; how to navigate the complicated and sometimes
unsupportive health care bureaucracy; how to maintain important
yet difficult daily routines.
Even in the best circumstances-with loving family members and
competent doctors ready to care, with neighbors and community institutions
ready to support caregivers, with ample resources in place to pay
for needed care-we still face difficult decisions case-by-case,
from individual to individual. And precisely because real-life situations
often fall short of the ideal-with no intimates willing or able
to care, with no money available to pay for care, and with overburdened
professional caregivers incapable of attending to every patient's
every need-we need ethical guidelines to protect those without advocates
from being mistreated or forgotten.
Without question, the challenge of long-term care is social, economic,
and medical: good caregiving is not possible without good social
policies, adequate economic resources, and competent doctors and
nurses who see caregiving as a vocation. But good care also-and
perhaps first of all-requires seeing what the good for vulnerable
patients really is, especially in the most difficult circumstances.
Without some ethical compass to guide us, the effort to provide
social and economic supports for caregiving will lack a clear foundation
and guiding purpose. And unless we can learn to discern the humanly
good or best possible in individual cases, we may lack the wisdom
to develop the large-scale social programs and small-scale community
supports that are surely necessary to sustain caregivers in their
important work.
Of course, the best caregivers, both professionals and volunteers,
do not "practice care" by engaging in the kind of searching ethical
analysis that follows. They act largely on tacit moral beliefs and
in light of experience, guided by love, or standards of professional
practice, or great reservoirs of compassion and skill. Good caregivers
often "muddle through" wisely, guided by the moral intuitions and
moral compass that help them do the best they can for those entrusted
to their care, often in circumstances of great difficulty. But it
is also the case that such moral intuitions do not develop out of
nowhere; they are shaped by the ethos of the society in which we
live, by the general culture and specific guidelines that govern
the practice of medicine, and by the role models who serve as our
teachers and our guides.
It is precisely the novelty of our aging society and the gravity
of the challenges it raises that may tempt us or force us to re-examine
what we have long taken for granted about what we owe vulnerable
patients-such as the fundamental belief that every person is "worthy
of care." And although unearthing our foundational ethical principles
for discussion is perhaps unnecessary and even dangerous in normal
times, doing so becomes necessary when the norms themselves are
called into question. It is precisely because caregivers are not
saints that we need to ensure that certain moral boundaries are
firmly in place and that the necessary freedom to act exists within
a social world where certain kinds of actions are unthinkable because
they are ethically out of bounds. And it is precisely because of
the heartache that accompanies seeing those we love suffer the ravages
of dementia that we need to guide compassion with ethical reason,
so that our compassion does not unwittingly lead us astray.
One final, introductory note: In the discussion that follows,
it is important to keep in mind the complicated relationship between
the legal and the ethical. In many areas of life, we are legally
free to do what we should not do, and we are not legally obligated
to do what we should do. In a liberal society like ours, we tend
to prohibit only the gravest evils and only those evils that directly
compromise the rights of others; we aim to give individuals maximum
possible freedom, under law, to make moral choices for themselves.
This is as it should be, given the complexity and particularity
of most moral choices and the grave evils that usually accompany
excessive efforts by the state to dictate the personal lives of
its citizens. But the wisdom of limited government does not mean
that free choice is the only or highest moral aim of our society,
or that public bodies, like this council, should remain silent or
neutral on the most profound moral questions. As a society, our
aim should be justice as well as freedom, and the pursuit of justice
begins by trying to see clearly what we owe one another, including
what we owe our most vulnerable members at the end of their lives.
This is, to begin with, an ethical question-one seen most
vividly as we contemplate what best care means in particular cases.
In seeing the limits of advance instruction directives, as we
did in Chapter 2, we do not turn our backs on the partial usefulness
of legal instruments or propose a legal revolution, though we can
imagine small-scale changes in the law that might improve caregiving.
But we do need to recognize that our existing procedures affect
our moral sensibilities, by teaching us that self-determination
is the primary value in need of defense, rather than instructing
us in the solidarity necessary to make good decisions on behalf
of those entrusted to our care. For this task, we need an ethics
of caregiving, one that guides how we think about the law without
offering any easy answers about what the best legal procedures might
be or should be. Our focus in the next two chapters, therefore,
is squarely on the ethical, and when we speak of aims, limits, and
obligations, we do not speak directly to the issue of what should
be promoted, limited, or required by law.
I. Defining the Subject
What in the broadest sense do we mean by "the ethics of caregiving"?
To think about ethics is to think about the goals we pursue
for ourselves and others (the good); about the kind of actions we
do (the right); and about the sort of people we hope to be (our
character). Each of these aspects of ethics is important, and each
makes its claim upon us.
In whatever we do, we should strive for worthy and estimable goods,
evaluating our actions as better or worse means to achieve those
goals. At the same time, we should assess our actions not only as
means to desired ends, but also in terms of the character of the
actions considered in themselves: their conformity to our moral
duties that prescribe certain actions as obligatory, and their adherence
to our moral norms that proscribe certain actions as wrong (even
if performed in pursuit of true goods). In addition, we cannot discern
rightly the goods we should seek or actions that are obligatory
or forbidden unless we strive to become the sort of people who can
see well and truly.
To think about growing old draws us into all three aspects of
ethical thinking, especially when we consider the moral significance
of dementia. We need to ponder the shape of a good life, and especially
the relation between flourishing and decline within a good life.
We need to think about right and wrong (or better and worse) ways
to age, and especially our duties toward those who, even if they
once cared for us, must now be almost entirely the recipients of
our care. And we need to cultivate within ourselves and our society
virtues such as courage, justice, and fidelity-courage as patients
in facing the progressive loss of our powers, justice as caregivers
in meeting the needs of those who can no longer reciprocate, fidelity
in preserving the ties that bind us to one another, resisting the
temptations of despair and abandonment.
To think about care is to think of how we care about
others and care for others. We learn to care about
others usually because others have cared about us-first in the family
and then with friends and others among whom we live. We are marked
by those near attachments and, therefore, we inevitably and properly
care about some people more than others. Those special attachments
are always limited, however, by our duty not to harm or do injustice
even to strangers. Caring for others takes many forms, some
quite simple and others very demanding. It surely includes medical
care, but it is much broader than that. In particular, caring for
those who suffer from dementia may mean helping in the activities
of daily living, making treatment decisions on their behalf, or
simply being humanly present in order to honor the dignity and meaning
of the demented person's past and present life.
All caring for others, and certainly its most demanding forms,
requires acts of giving. Most often in human life we both
give and receive care-in ways too complicated ever to be perfectly
reciprocal. Parents give care to their children in ways that can
never be fully repaid; yet in most cases, they are happy to do so.
Children "repay" the care they received only when they later give
care to their own children. Yet increasingly in our world, adult
children also are summoned to care for their aging parents. The
cycle of giving and receiving from generation to generation comes
full circle-not as the realization of a contract (which could never
capture the complex reciprocities of family life) but in the mutuality
and fidelity that are both goods we seek and virtues we hope to
develop.
In certain respects the task of those who care for persons suffering
from dementia is more demanding than that of parents raising children.
For parental sacrifice is oriented toward developing and increasing
the capacity of the child, a goal that brings meaning and fulfillment
to the nurturing parents. But caring for those with dementia means
selfless and uninterrupted giving in the face of irreversible decline.
For many, this kind of sacrifice on behalf of needy persons at the
end of their lives, however difficult, is also a source of great
fulfillment. Providing long-term care sometimes yields concerted
engagement among family members, improved recognition of priorities,
genuine expressions of love, and in some cases a certain "completion"
of the cycle of relationship and reconciliation. Such care is often,
simply, good in itself, an expression of human beings at their best,
standing with one another. But it is also true that in days of struggle,
some caregivers may wonder whether sacrificing so much on behalf
of such a diminished life is really "worth it," or even whether
helping to sustain life in such a diminished state is really a benefit
to the diminished person.
To think about this task is the ethical challenge facing our society,
a responsibility which the Council hopes to help meet in offering
this report. A first step, to which we now turn, is to think about
the threefold human context of caregiving-about the worth of human
lives, about the meaning of human deaths, and about the capacities
and limits of modern medicine.
II. Human ContextS of Caregiving: Life, Death, and
Modern Medicine
Caregiving is an activity that invites reflection about who we
are as human beings-about how we live, how we die, and how we use
medical knowledge and technique to sustain life and resist death.
We can hardly do justice to such momentous subjects in the present
report. But without some attention to these deeper human matters,
it will be difficult-for both policymakers and actual or prospective
caregivers-to think clearly and well about both the nature and the
limits of caregiving in the coming decades.
A. The Worth of Human Lives
The increasing incidence of dementia is forcing-or inviting-us
to think in particular about the meaning of human worth. What makes
a diminished life worthy of our care, or worthy of life at all,
or worth the resources society expends to sustain it?
These are not congenial questions, especially for a society rooted
in ideas of the equal dignity and incalculable value of every human
individual. Such questions are also foreign to the ethical outlooks
of physicians and health care professionals, who are taught to devote
themselves to the well-being of their patients regardless of their
infirmities and disabilities. Indeed, they regard each patient as
worthy of their ministrations simply and precisely by virtue of
being in need of them. Patients have "worth" in the eyes of the
doctor because they are human beings who have presented themselves
as patients. Ethical medicine serves health and life, it does not
judge life's quality-and certainly not as a criterion for treatment
eligibility.
Nevertheless, public discussions today of end-of-life issues frequently
speak of "quality of life," implying that certain "poor" qualities
of life might disqualify one from a claim to treatment or from further
prolongation of life. Questions about the worthiness of expending
time and resources treating the severely disabled or demented patient
seem increasingly tied to tacit-or sometimes explicit-judgments
about the worth of the life being cared for. Like it or not, alien
or not, we must take up this topic, if only to be better equipped
to deal with public arguments that traffic casually in these grave
matters.
In common parlance, we speak of the worth or worthiness of a human
life in many different ways and with many different meanings. One
way invites assessments of comparative worth. In the economic sense
("How much is he worth?"), different people are worth very different
amounts, and the same person is worth different amounts at different
stages of life. In organizations, some people are worth significantly
more than others: for example, the League MVP (most valuable player)
is worth more to a baseball team than a backup infielder, and so
protecting the health of the MVP is a much higher priority. At the
same time, the promising rookie with many good years ahead may be
worth more than the all-star nearing retirement. Beyond economic
and utilitarian considerations, many of us believe that some people
live lives that are more admirable than others: the hero or statesman
who defends his country (a Washington or Lincoln), the great poet,
painter, composer, thinker, scientist, or inventor (a Shakespeare,
Raphael, Mozart, Plato, Newton, or Edison), the devoted humanitarian
(a Jane Addams or Mother Teresa), and, on a less grand scale, people
we know in everyday life whom we admire for their character, accomplishments,
or contributions to the community.
In these respects, human worth can be both variable among persons
and changeable over time. In happy times, one's life seems to be
worth more. In terrible times, we might wonder whether being alive
is really worth it.
And yet, even as we make such comparative judgments, we also affirm
another, non-comparative, way of speaking about the worth
of human lives, based on the recognition of what all human beings
have in common. For if we make human worth depend entirely on those
roles or capacities or accomplishments that some people find worthy,
or on the changing feelings and perceptions of the moment, we risk
ignoring or denying a more basic human worthiness to which we are
committed. If we value only the great ones, we do an injustice
to the dignity of ordinary human beings, ourselves included. If
we value only those whose potential is still open to be fulfilled,
we risk dishonoring those whose potential has largely already been
fulfilled. If we value someone solely because of the powers he now
has, we risk abandoning him when those powers are gone. In some
areas of life-like professional sports-it makes perfect sense to
put individuals "on waivers" when their talents dry up. But in other
contexts-like basic human rights or decent medical care-valuing
only the healthy, wealthy, or competent seems to deny the worth
that all individuals possess equally, simply by virtue of our shared
humanity.
When thinking about human worth in the caregiving context, we
have at least four fundamental principles that might guide us: autonomy,
where one's worth is manifested in one's power to choose and determined
entirely by one's own judgment; utility, where one's worth
depends entirely on one's usefulness to oneself or others; quality,
where one's worth depends on possessing or exercising certain humanly
fitting, admirable, or enjoyable traits and capacities; and equality,
where every human being possesses an equal and intrinsic worth simply
by being part of the human community.
Each of these perspectives may be useful for certain purposes
and in certain circumstances. But in matters regarding life, death,
and basic rights, the most basic commitment of our society is and
has been to human equality. In a society "dedicated to the proposition
that all men are created equal," we must ensure that we do not allow
the genuine inequalities of human capacities and human character
to blind us to the equal humanity of all human beings. In part,
our equality arises out of our shared vulnerability. We are all
vulnerable to the deprivations of illness or injury and to the limitation
of mortality, and thus we all have a personal interest in ensuring
that needy persons are treated equally and adequately.
But our commitment to equality is more than simply calculating;
it is more than a future's contract in human care, purchased by
the healthy to insure against the contingency of biological misfortune
or the inevitability of decline. Rather, the commitment to equal
human worth stands as the basis of a welcoming community-one that
assures all living human beings, even those in a disabled or diminished
state, that their lives still have meaning, worth, and value for
all of us. It assures them that we would not prefer them dead even
if we would like to see an end to the suffering that marks their
present condition.
Those with advanced dementia test our commitment to human equality.
They force us to ponder whether treating people equally is always
the best way to treat them well or the most fitting way to give
them their due. We wonder about those who cannot enjoy even the
most basic physical pleasures; or those who lack even minimal consciousness;
or those whose lives are marked by the permanent loss of self-control
and the constant need of sedation, with death looming and no hope
of recovery. Surely, no one, given alternatives, would choose such
a life for himself. We may sometimes wonder whether such a life
is "useful" to oneself or to others. We may be unable to find in
such lives the "qualities" we most value. And we may suppose that
any "autonomous" person should be able to decide ahead of time whether
to continue living in such a state. Even if equality grounds our
ultimate obligations to such persons, it does not always seem to
accord with our experience of being with and caring for them, or
replace the lived sense that human beings in such a diminished state
have lost much that is humanly worthy.
In crucial respects, therefore, the "ethic of equality" (valuing
all human beings in light of their common humanity) exists in deep
tension with the "ethic of utility" (measuring lives by what they
are worth to oneself or others), with the "ethic of quality" (valuing
life when it embodies certain humanly fitting characteristics or
enables certain humanly satisfying experiences), and with the "ethic
of autonomy" (valuing each person's freedom to decide what sort
of life has worth for us as individuals). If the worth of a human
life depends entirely on a person's utility, then some lives are
clearly more valuable than others: we need workers, soldiers, leaders,
and doers, and we rightly admire people who achieve great things
or produce the means of their own subsistence. If the worth of a
human life depends upon the presence of certain uniquely human qualities
(such as, for example, memory, understanding, and self-command),
then we may judge that some lives never had such worth and others
(such as those with advanced dementia) no longer do. If the worth
of a human life depends on one's "autonomous" assessment of self-worth,
then clearly some lives will be judged to have little worth, and
other lives (such as those incapable of autonomous choice) may seem
to lack human worth altogether.
Against these dangerous and erroneous temptations, the "ethic
of equality" defends the floor of human dignity, ensuring that even
the most diminished among us is not denied the respect and care
that all human beings are owed. The Council embraces this teaching
as the first principle of ethical caregiving. Yet, in some respects,
equality will always stand in tension with what may seem to mark
the height of human dignity: the qualities that distinguish
our humanity, that make us useful to others, and that we freely
choose and affirm for ourselves. That tension will always mark our
thinking about the process of aging and the ravages of dementia.
In the face of these tensions, it may often be difficult to know
how to honor properly the several strands and claims of human dignity
and human worth. Consider, for example, a virtuoso violinist whose
mother gets Alzheimer's disease, whose musical calling must now
compete with long days of caregiving, her pursuit of human excellence
in conflict with the demands of human neediness. How does she strike
the right balance between her two callings? And how do we honor
the virtuoso herself when she gets dementia and her treasured capacities
disappear? We do not doubt for a moment that the virtuoso with dementia
remains a full member of the human community, equally worthy of
human care. But this hardly settles what it means to care for her
well, or what it means to defend her dignity when her special qualities
are fading or gone. For all people-and perhaps most vividly for
those who once stood high above the ordinary-the regression to dementia
and incompetence, with all its accompanying indignities and loss
of self-command, may seem dehumanizing and humiliating; and extending
life in such a condition may seem like a cruel mockery of the person's
former stature.
In every human being, dementia erodes many estimable and beloved
human qualities, gradually eliminating the things that make one's
life truly lovable. It makes each human being less than what he
or she once was, even if we rightly see that the diminished person
still retains his fundamental and equal human worth and is still
equally worthy of human care-and perhaps more worthy of care
because his or her dependence is so complete. Yet even as
we cling proudly to those powers that once defined us, we must also
humbly remember that we possess those powers not simply because
we merited them, and never in perpetuity. Although the desire to
die with as much dignity as one has displayed while living is understandable
and even admirable, it fails to appreciate the human surrender that
death unavoidably brings to us all.
B. The Meaning of Human Deaths In modern
societies-and perhaps in every age-we are prone to two kinds of
extremes in thinking about the meaning of death: The first is believing
that death is the worst thing possible and the greatest evil, to
be opposed by any means and at all costs. The second is holding
that death is "no big deal," that it is simply a natural
part of life.i
To think of death as the greatest evil tempts us to do great harm
in the cause of overcoming it and seduces us with the belief that
human beings ought to conquer death by human will and oppose
it always by human effort. But to think of human death as simply
natural ignores the dreadful reality: the earthly extinction of
a human soul, the erasure of a unique person with a never-to-be-repeated
life. And it ignores how consciousness of mortality distinguishes
human beings from the other animals for whom death cannot be more
than "merely natural," and how this self-consciousness contributes
to our being persons with interests, aspirations, and longings.
Perhaps the first thing we realize about death is its inevitability:
everyone dies, and knows it. Death is the event that announces our
ultimate limitations, our lack of mastery over embodied life, our
final need to learn how to surrender ourselves or surrender with-and-for
those entrusted to our care. To be sure, we can and do exert some
control over the circumstances of our death: by the healthy or unhealthy
choices we make throughout life; by our chosen vocations and avocations;
by how we act in moments of danger or crisis; and by the choices
we make about the use (or non-use) of medical interventions. But
such decisions and actions rarely ensure a particular moment
of death, even if they make a certain type of death more
likely or more imminent. The only way to assert perfect control
over the time and manner of one's death is by suicide-which embraces
oblivion in the quest to assert one's mastery, often in the face
of misery and anguish we cannot escape or control.
Although death is never a "good" in itself-even if good things,
such as the end of terrible suffering or (in the belief of many)
a passage to heaven, may accompany its arrival-it is surely possible
to speak of "better" and "worse" ways to die. Many types of death
are undesirable; they are ways and times of dying we would all avoid
for ourselves and never wish for our loved ones: The young child
killed in a car crash or dying of leukemia (an untimely death);
the person captured, tortured, and beheaded (a lonely, brutal, and
humiliating death); death after a long period of excruciating physical
suffering (a prolonged and painful death). Yet, there may be times
when the only way to avoid such an undesirable death-say, by betraying
one's comrades or taking one's own life-seems equally or even more
horrible.
There are also ways of dying that are humanly ambiguous. Consider,
for example, a very old man who dies swiftly and suddenly of a heart
attack. We do not call his death untimely, even if it was unexpected.
Perhaps he was ready to die, and perhaps he always hoped to avoid
a long, painful decline into debility and dementia. Yet such a death
might also deny a dying person the chance to say his final goodbyes,
to reconcile himself to his own demise, to put his affairs in order,
and to die in the company of those who love him and will remember
him. And it might deny those loved ones the same last chances-to
say goodbye, to reconcile, to be there at the very end. Such a death,
while swift, is denied one final twilight.
Consider, as a second example, a young fireman who dies rescuing
a child from a burning building. Such a death is surely untimely,
in that the person may leave behind a young wife or young children,
or perhaps never lived long enough to have children who will follow
him. In every sense, to die so young is to be a life cut short.
Yet such a death-and more importantly, such a life-is marked by
nobility; it spurs the moral imagination of those who remember the
person who died; it is, in every sense, an admirable and noble death,
if not a death most people want for themselves.
Death at the end of long-term debility and dementia is an especially
complicated case. Most people who die of Alzheimer's disease, for
example, have been blessed with a full life; they have avoided untimely
or sudden death; they have lived to see children and grandchildren
born, or careers pursued, or wealth accumulated. But such a death
also entails certain special burdens for the dying person-at first,
the burdens of looking ahead to a period of lost self-awareness;
throughout, the burdens of living in a condition of growing,
and ultimately total, dependence. Looking ahead, one might foresee
one's own children or spouse changing soiled garments; or fear hurting
the grandchildren's feelings by not remembering shared experiences;
or making inappropriate comments at inappropriate times; or causing
long days of struggle for the people one loves most, without the
privilege or possibility of sacrificing one's own good on their
behalf. And one must eventually live through the burdens of dementia
itself-from the terror of treatments one does not understand to
the disorientation of being moved from one's home to the nursing
home to the hospital. When death finally comes for those with advanced
dementia, they are no longer fully aware of the self whose life
is being surrendered. Perhaps they can no longer fear or hate death
in the way a self-conscious person often does, and so they can die
more peacefully. But this absence of awareness might also be seen
as a deprivation, for it denies individuals the chance to face death
frontally, with the dignity that requires an awareness of death's
coming.
Appalled or terrified by such prospects, and refusing while still
in self-command to submit themselves to what nature has in store
for them, some people may be tempted to orchestrate the time and
manner of their dying, by rejecting all medical care or even electing
suicide here and now. In a discussion of the ethics of caregiving,
ethical arguments about suicide-as opposed to ethical arguments
about euthanasia-are largely beside the point,ii
and a full discussion here is neither necessary nor possible. But
because both of these subjects-taking one's own life and caring
for others-relate in some measure to judgments about human worth
and our understanding of human mortality, we offer a few observations
about the meaning of suicide that are especially germane to thinking
about caregiving in relation to death.
In some cases, suicide is a deliberate choice against the need
to be cared for by others; it is a self-conscious choice against
becoming dependent. In other cases, suicide is a desperate act of
loneliness or isolation, taken by those who fear that no one will
be present to care for them; it is a self-conscious choice against
being abandoned. Suicide can be motivated by the desire to live
only if one can stand alone, or by the desire to die because one
fears standing alone.
Yet to be human is, inevitably, to exist in community with others.
None of us becomes a self on our own, and our lives are connected
in countless rich and complicated ways with the lives of others;
from birth to burial, we depend on and are attended to by others,
and we touch others' lives in deep and often mysterious ways, even
in our days of decline and dependence. Hence, to take one's life
is to take part of others' as well-sometimes deliberately, sometimes
knowingly, sometimes (paradoxically) out of fear that others will
want no part of us. Yet there is no reason for loving caregivers
to tolerate or embrace such a desperate act of rejection, only a
greater reason to affirm the bonds of fidelity and care that give
individuals the needed strength to face whatever life has in store
for them.
However understandable the motive, to seek death by human self-destruction
seems to misunderstand the limits of human will. Orchestrating
the precise manner of our dying seems like one last attempt at control
and mastery-at the very time when, paradoxically, aging and dying
are announcing to us the limits of our control and mastery. It invites
us to pretend that we can entirely transcend the uncertainties of
nature and the limits of our finitude. It blinds us to the sad truth-but
a truth with which a life humanly lived must come to terms-that
aging announces what death means: the limits of the autonomous self,
limits visible both in the corpse we become and in the pain of those
who must bury it.
These humbling reminders notwithstanding, caregivers for persons
with dementia will unavoidably exert some measure of control over
the time, manner, and circumstances of the person's death, whether
by action or inaction. With numerous life-and-death decisions now
foisted upon us as caregivers, it is less and less possible just
to live and care well, letting death "take care of itself." This
grave responsibility for others is often wrenching, leaving caregivers
to wonder what truly loving care requires: Do we benefit or harm
the person by extending a life that is terribly painful? Do we benefit
or harm a person by extending a life that the person himself might
have found undignified? Do we benefit or harm a person by extending
a life that burdens the very people the person loved most? On the
one hand, we might believe that there is a better way for a person
entrusted to our care to die, and fear that extending his life is
only making a worse death more likely in the future. On the other
hand, we should recognize that caring for another entails certain
obligations, including (as we discuss more fully below) the obligation
not to seize an occasion for the person's death, and the obligation
never to allow our own desire for relief from caregiving to corrupt
our sense of what it means to benefit the (even minimal) life the
person still has.
In the age of modern medicine, how we die also depends on how
we use medical interventions-both for ourselves and for others.
The advance of medicine allows us to hold off death in more ways
than ever before, and, in doing so, it makes certain kinds of death
or patterns of dying more common. Of course, chance still has a
large say in the manner of our "going hence"-both for better and
for worse. Nature (or fate or chance) robs human beings of life
with no rhyme or reason; it sometimes robs the young of a ripe old
age or robs the old of the final chance to say goodbye. But human
life also seems to have a natural shape: the ascent of the child,
the maturity into adulthood, the raising of one's own young, and
the coming of death in the cycle of the generations. One question
we face is whether the technological powers that enable us to resist
the inhospitalities of nature have also introduced new dilemmas
or even deformations into the natural course of human life, especially
regarding how we die.
A peaceful death in a ripe old age is widely regarded as the human
ideal. "Gathered to his kin, old and sated with years," is the biblical
description of the death of the patriarch Isaac. And Xenophon described
the good death as follows:
It may be . . . that God out of his great kindness is intervening
in my behalf to suffer me to close my life in the ripeness of
age, and by the gentlest of deaths. For if at this time sentence
of death be passed upon me, it is plain I shall be allowed to
meet an end which . . . is not only the easiest in itself, but
one which will cause the least trouble to one's friends, while
engendering the deepest longing for the departed. For of necessity
he will only be thought of with regret and longing who leaves
nothing behind unseemly or discomfortable to haunt the imagination
of those beside him, but, sound of body, and his soul still capable
of friendly repose, fades tranquilly away.1
iii
The question we face is whether modern medicine, by coming so
readily and heroically to our aid, has made such a tranquil and
timely death less likely, and, by intervening against the "gentlest
of deaths," has increased the likelihood of an "unseemly or discomfortable"
decline.
C. Modern Medicine The benefits of modern
medicine are obviously too varied and too significant to delineate
fully here: the dramatic reduction of infant mortality; the near-eradication
of infectious diseases such as polio and tuberculosis; new strategies
for preventing early and sudden causes of death such as heart disease;
vast improvements in the management of pain; and, in general, a
longer and better quality of life for many people into their sixties,
seventies, eighties, and beyond. Thanks to modern medicine, old
age has become the social norm, rather than the rare exception-and
for this gift, among others, we should surely be grateful. Those
of us fortunate enough to live in the age of modern medicine probably
cannot fully imagine the miseries of life without it, and what it
meant to be so fully at the mercy of errant nature, or what it meant
to become sick without understanding the biological cause of one's
symptoms.
But as we discussed in Chapter 1, new technologies also create
new dilemmas, and some of the effects of modern medicine on the
trajectory of life and death are more ambiguous in their human significance.
Because earlier, swifter causes of death are more frequently held
at bay-a great good in itself-more individuals live long enough
to suffer long-term debility, decline, and dementia. Death from
sudden illness is now the exception; death following lengthy chronic
illness is now the rule. A vast menu of medical machines and novel
therapies can keep individuals alive for longer stretches in old
age, but not necessarily make them well again, either in body or
in mind. In addition, because of our reliance on modern medicine-and
the constant hope that nature's final blow can be averted-the vast
majority of individuals now die not at home but in hospitals or
other professionalized health care settings, institutions whose
animating spirit is to resist death and delay its arrival rather
than to teach people how to face death with as much serenity and
courage as the dying individual and his loved ones can muster.
Looking ahead to an age in which dementia will likely become more
prevalent, some wonder whether modern medicine has deformed the
natural shape of life by preventing death in the proper season.
Those causes of death that once might have been seen as merciful
and timely endings to a life "ripe with age" can now commonly be
defeated by medical intervention, often prolonging lives marked
by great physical suffering, emotional despair, and utter debility.
In 1898, for example, Dr. William Osler wrote that, "Pneumonia may
well be called the friend of the aged. Taken off by it in an acute,
short, not often painful illness, the old man escapes these cold
gradations of decay so distressing to himself and to his friends."2
But today, we can often defeat pneumonia and other ailments that
afflict the afflicted, and we can prevent the "acute, short, not
often painful" death that these ailments once delivered. As the
possessors of this medical power, we face a number of questions
with no easy answers: Does curing pneumonia or other ailments for
an elderly, debilitated, suffering person really benefit the person?
Are there cases when pneumonia is in fact "the friend of the aged,"
such that curing pneumonia is not a form of care but an acquiescence
in or imposition of future degradation? Does the power to cure pneumonia-without
imposing new burdens in the act of treatment-create a moral obligation
to do so?
The doctors and scientists who have brought us such welcome medical
benefits did not, of course, intend to cause us these dilemmas;
their goal remains a full life for all, lived to the natural end
free of disability. But although medical progress is always made
by human beings, the human makers themselves do not fully control
its exact direction, or the ways new medical powers can affect the
shape of human life. For example, it may be that our capacity to
prevent or correct various types of organ failure will one day allow
us to sustain the human body for much longer than we do now, without
reversing severe cognitive decline from age-related dementia. For
a disease like Alzheimer's, we may discover ways to radically extend
the middle-stage, where the disabling cognitive and affective aspects
of dementia have already arrived but the total breakdown of the
body has not yet begun. Many of these interventions may work without
burdening the patient in the act of treatment. But are these interventions
necessarily good for the person entrusted to our care, and do we
have a moral obligation to use them?
As devoted caregivers, we do not want to refuse or cease treatment
so that the person will die, and we do not want to abandon
care by excluding our patients or loved ones with dementia from
the medical benefits enjoyed by the wider community. Yet we must
also wonder whether repeated interventions to rescue the patient,
yielding him years or decades of incontinence, minimal consciousness,
and constant neediness, is really a human benefit and therefore
a human obligation. At some point, we might be tempted to ask whether
continued treatment seems more cruel than caring, not love but betrayal,
a way of perpetuating degradation at the hands of merciless nature
rather than benefiting a diminished but still worthy human life.
How we think about such questions depends largely on how we think
about the character and limits of human agency, both in general
and especially at the end of life. Although death surely announces
the ultimate limits of human mastery, human beings will often exert
considerable control over the shape of dying, both for themselves
and for others. Intervention and non-intervention are both acts
of orchestration, whether the aim is to extend life, to hasten death,
or to relieve or prevent suffering. Of course, this power of orchestration
is always limited by the inevitability of death and the unpredictability
of even a well-studied and well-understood human biology. But in
the end, we cannot avoid the responsibility to shape the life-course
of those entrusted to our care, which is why we need some reliable
moral guidelines for deciding when, how, and why to intervene or
not intervene with the medical art. (We will consider these moral
guidelines below.)
As providers of medical care for those who are aging, suffering,
and nearing death, we must aim to cure when we can, but also recognize
that in many cases cure in any strong sense is no longer possible.
Medicine, which is ethically committed to cure when possible, is
also committed always to comfort and always
to care. Our duty is never to abandon those who are aging and
dying-even and especially when, diminished by dementia, they are
dependent on commitments they can no longer ask or demand of us.
It is this obligation-not to betray or abandon those in our care-that
is the most fundamental commitment of physicians, nurses, and all
of us who participate with them in deciding how best to serve the
well-being of those with diminished capacities. We betray them
if, even with the best of intentions, we subject them to treatments
that cannot benefit them or that burden them. We abandon them if,
even with the best of intentions, we do not do what we can to benefit
the life they still have.
Of course, this fundamental commitment not to abandon those who
are ours to care for does not answer all the difficult questions
we face. If it did, we would have no need to speak of the art
of medicine and, thus, the need for discernment and prudent judgment.
For example, medical ethics has generally held that withholding
or withdrawing medical treatment is permissible only when that treatment
yields no benefit or when it burdens a patient excessively; yet
this restriction may seem less than fully satisfactory in the face
of hard cases.
Imagine the case of an elderly person in constant terrible pain
who contracts an ailment that is easily treated but deadly if ignored.
As caregivers, we face a choice between prolonging the painful life,
sedating the person constantly, or letting a patient die who may
not otherwise have to die soon. None of these choices seems obviously
best or especially satisfying. This hardly means that our choices
were better when our medical powers were more limited: surely we
can control pain much better now, and surely some might argue that
life in pain or under heavy sedation is still better than death.
But it suggests that sometimes life-sustaining interventions are
morally ambivalent, even in situations where denying their use seems
morally questionable. (We will examine this dilemma more fully in
the next chapter, when we consider some cases in detail.)
Modern medical advance also raises a challenge to the traditional
ethical principle regarding forgoing life-sustaining treatment.
If the only morally permissible criteria for forgoing life-sustaining
medical treatment is that the treatment itself is burdensome or
ineffectual, then every affordable treatment that meets these criteria
becomes a moral obligation. Every medical invention of such a sort
creates a new moral duty-regardless of how the invention seems to
affect the trajectory of life and death, and regardless of whether
it seems to serve or undermine our considered understanding of what
would be a more or less humanly fitting way to live and die. By
such criteria, we seem, to some degree, bound by technological inventions
that may not always serve what seems like the human good. And we
often leave ourselves with a range of morally and humanly unsatisfying
choices.
What we face here is a particularly poignant instance of the dilemmas
modern technological advance brings to many areas of life. The combination
of new medical powers (such as curing pneumonia with ease) and lasting
moral duties (such as never withholding effective and non-burdensome
treatments from patients who are not already irretrievably dying)
may create a situation in which progress constrains human
choice as much as it expands it. As caregivers, we are surely
not responsible for the burdens of disease or the pain of ailments
that we cannot ameliorate. We are not responsible for the burdens
of nature that we cannot fully control. But we are responsible for
the use of man-made medical powers, and it is this responsibility
that creates the most puzzling ethical dilemmas-especially when
sustaining another person's life means extending a life marked by
great pain and worsening deprivation.
Modern medicine, although greatly blessing and enhancing our lives,
has also sometimes made it harder to know how best and truly to
care for those with diminished capacities and for those living with
serious and eventually fatal illness. Often, we have the medical
capacity to extend life or delay death but without the moral capacity
to know that doing so is really a benefit to the person who
needs us to speak and act on his behalf. This is, in a profound
sense, the caregiver's dilemma: a successful but always limited
medical art, a progressive disease that erodes the mind on the way
to disintegrating the whole person, moral uncertainty about how
best to care. The rest of this chapter addresses the caregiver's
dilemma: it offers ethical analysis and guidance regarding the ends
and means of caregiving, with special attention to decisions regarding
medical treatments for patients with dementia who get sick in other
ways.
III. The Ethics of Caregiving
For a variety of reasons, national discussions about aging, dying,
and caregiving have focused largely on "end-of-life issues," on
those dilemmas that bring life, quite literally, to a point: Should
we treat this deadly ailment? Should we discontinue this life-sustaining
intervention? Is it ever permissible to take active measures to
end a life, either with or without the person's consent? These questions
are crucially important, and we shall address them in the discussion
that follows. But we must also remember that caregiving involves
not only those moments when life comes to a point, or only those
decisions regarding the use of medical interventions to sustain
or end life. Caregiving, especially for persons with debilitating
illnesses like dementia, involves much more the daily activities
of being there for the person in need: protecting them from
harm, managing their affairs, comforting them in dark times, feeding
and bathing them and changing their soiled garments, and deciding
when best care requires placing them in a long-term care institution
to be cared for constantly by others.
The decisions we make when a person's life does come to a point
will be shaped by the manner of caregiving that brought us to that
point. For even though most caregiving decisions are not immediately
matters of life and death, caregiving always embodies tacit judgments
about the worth of the person entrusted to our care and always displays
the character of the caregivers. Caregiving always involves thinking
about what we owe to those who need us to speak for them and stand
with them, precisely when they can no longer speak for themselves
or stand alone. Our ability to fulfill these obligations-not just
heroically in times of crisis, but mundanely and regularly on a
daily basis-will make the decisive difference in the everyday life
of those for whom we care.
We will keep these broader considerations in mind as we now focus
on the ethics of caregiving in the clinical context. Our exploration
proceeds in three basic parts. First, we consider the positive
goals that caregivers might serve-moving from respect for
the person's prior wishes, to the well-being of the family, to the
good of the larger society, and finally-and most importantly-to
the "best care" of the person now present. Second, we consider some
moral principles and moral boundaries that should guide and
constrain caregivers, as they try to serve that goal. As we shall
indicate, the ability to pursue the "best care possible" depends
on erecting such boundaries, both against unethical options and
(even more) against our weaknesses as caregivers, especially as
we care for persons who try our patience and test our ability to
serve them wholeheartedly. Third, in the next chapter, we consider
how loving prudence might function in a series of concrete
and difficult cases. In other words: ethical caregiving involves
the pursuit and promotion of good; the protection
against ill; and prudence in judgment, here and now.
A further word is needed about prudence, a central notion in our
account. In everyday speech we sometimes call "prudent" those decisions
or actions that compromise to some extent what is good or just.
Prudence is sometimes seen as mere compromise or cleverness, or
as settling for something less than the truly good or morally required.
In our moral tradition, however, prudence is a high virtue, in no
way opposed to justice or goodness. On the contrary, prudence is
that excellence of heart and mind that enables us to see deeply
and wisely into the truth of things-deeply enough to discern the
goods that are present, wisely enough to identify the best means
available for pursuing those goods, without violating the norms
of right and justice. Thus, prudent human caretakers seek to discern
concretely the patients' good, here and now, and in doing so, they
also observe the boundaries that justice imposes on us.
As we will see, the obligation to seek the best care possible
hardly means that there is an easy answer in every case, or that
there is a single best decision in every situation. In circumstances
that admit of no happy options, morally conscientious caregivers
may disagree as to which course of action is least harmful to the
patient. But a commitment to seek the best care possible under the
circumstances will help ensure that some kinds of decisions or approaches
to decision-making will remain morally off-limits, because they
are antithetical to care itself. The pursuit of best care both guides
and constrains us as we seek the good (or best possible) in hard,
often tragic circumstances.
A. The Goals of Caregiving 1. Respect
for the Person's Prior Wishes and Ideals.
As we noted in the last chapter, the guiding principle of the
current legal arrangements governing caregiving for persons
with dementia is the obligation to respect the wishes of the competent
person the patient once was-what some scholars have called "precedent
autonomy."3
At the extreme, this idea seems to imply that only competent individuals
command respect as persons, and, more subtly, that all individuals
with dementia are objectively less worthy of care than they were
when they were cognitively healthy; or it suggests, at the very
least, that there is no obligation to consider their best interests
as they are, here and now. But mainly, "precedent autonomy" means
that all individuals should have the freedom to decide for themselves,
while they are still competent, whether (later) life with dementia
would have any meaning or dignity for them, and what kinds
of treatment should be pursued or rejected on their behalf.
There is, as we have seen in Chapter 2, a partial wisdom in this
approach: It aims to honor the distinctness of each individual as
a person with a unique and continuous life-history, and it seeks
to maintain a connection between the person one was when fully self-aware
and the person one might become (or now is) with dementia. It acknowledges
each person's claim to self-determination, sets some limits on the
types of decisions caregivers can make on behalf of voiceless persons,
and protects them against the dangers of unwanted under-treatment
or over-treatment. It also offers some direction and protection
to future caregivers, who might tremble at the prospect of deciding
the fate of a loved one without any guidance, or fear ever "letting
go" without some formal permission to do so. For all these reasons,
it makes sense to suggest that one of the goals of caregiving is
to honor the prior wishes of persons who are no longer able to make
their wishes known.
But as we have also seen, respect for the wishes and values of
the competent person once present is often an insufficient or poor
guide for caregivers in the clinical setting. In many cases, the
person's prior wishes are simply not clear or not known. Many people
cannot fully envision what they would want in a situation they have
never experienced or imagined; they cannot speak for a self that
does not yet exist; or they do not wish to confront the prospect
of dementia and debility while still in their prime. The moral scope
of past wishes is also limited, because a person's interests can
change over time and change dramatically with dementia.
More broadly, as discussed above, self-determination has intrinsic
limits in a civilized and decent society. Even if the law allows
it, there are strong moral reasons not to aim at our own
death or to ask others to help end our lives by willful acts. Even
a competent person's wishes should be limited by such moral boundaries
and considerations, because sometimes one's own wishes do an injustice
to the value of one's own life, or to the concerns of one's loved
ones, or to the norms of the broader society. Our lives are intertwined
with others, who are affected powerfully by our choices, and who
are themselves conscience-bound moral agents. Our caregivers are
not obligated to execute our wishes if those wishes seem morally
misguided, nor obligated to enter into contracts that require them
to violate important moral precepts that are binding on everyone.
In life as actually lived, the burdens of decision always happen
here and now, in circumstances that past directives, written then
and there, cannot always imagine. These decisions fall on caregivers
and surrogate decisionmakers, who experience the loved one with
dementia as they are now. These caregivers are no doubt saddened
by the capacities that are gone, but they are also bound to the
person still present, who is more to them than a breathing corpse
and an inherited set of instructions. Caregivers need to consider
the incapacitated person's present needs and satisfactions, not
only the once-competent person's past wishes; and they are summoned
to make decisions not only for the self that exists in memory, but
also (and especially) for the self that exists now in embodied reality.
This does not mean that the character or wishes of the individual
before the onset of dementia should be treated as irrelevant in
deciding how to care for the person she now is: to treat the personal
past as irrelevant would deny the continuous life trajectory of
the individual; it would deny, in a different way, the reality of
the embodied self. The caregiver should always strive to honor the
ideals a person with dementia once self-consciously held even though
self-awareness is now largely or entirely gone, and to honor her
past wishes and past character without transgressing certain firm
moral boundaries.iv
This requires, in the end, that we look also to aims and obligations
beyond respecting precedent autonomy in making decisions for the
incapacitated person now entrusted to our care.
2. The Well-Being of the Family.
Primary (non-professional) caregivers and recipients of care are
most often members of families, linked by bonds of affection and
obligation (and sometimes affected, too, by the frustrations and
resentments that often develop in family life).v
In giving care to an especially needy family member, caregivers
understandably and rightly worry also about the well-being of the
family as a whole. A caregiving spouse, for example, might think
about how continued care for a husband or wife with dementia affects
the well-being of children and grandchildren. And a caregiving adult
child might think about the good of her own family, and how the
obligations of caring for an aging parent in her home will affect
her ability to care for a growing child.
One approach to aiming at the good of the family might be strictly
utilitarian, weighing the costs and benefits of sustaining a dependent
person's life for everyone in the family: Does the living presence
of a parent or grandparent, in his or her current condition of dementia,
give more joy than heartache? Is the cost of care to the family
compensated by the continued life that this expense makes possible?
And when does this cost-benefit calculus change?
But such narrow utilitarianism seems out of step with our society's
moral understanding of family life. Central to our ideals of family
life are the bonds of fidelity it entails, both for better and for
worse. We do not (or should not) enter into and out of families
like contracts, where the only purpose is our maximum pleasure or
advantage. Rather, we aspire to live in and through families-as
parents, children, siblings, spouses, grandparents-in a spirit of
unconditional mutuality, recognizing that just as others care for
us, we may one day care for them, and recognizing that mutuality
is not always the same as reciprocity: in families, we must sometimes
give more than we seem to get. By reducing an individual family
member simply to a source of benefit or pleasure for other family
members, we risk undermining the very idea of the family that such
a utilitarian calculus supposedly aims to promote. In the name of
family happiness, we risk undercutting family fidelity and loyalty
altogether.
Without question, family life is often hard and imperfect and,
for some, a source of pain more than strength, heartache more than
joy. But the suffering many people endure within families-especially
the experience of feeling abandoned or betrayed-does not justify
denying what family can be at its best or what people might reasonably
aspire to in family life. And it does not require giving up the
hope that some families in trouble can reconcile and renew the ties
that bind, and with it the willingness to stand with those fellow
family members in need.
But even within affirmed bonds of fidelity and mutuality, matters
are rarely simple. A caregiver might ask how her father, always
a good provider, would now seek-if he could-to benefit the family,
even in his dependent and cognitively disabled state. A caregiving
husband might be troubled by seeing his afflicted wife become so
utterly reduced before the aging couple's children and grandchildren,
and wonder what such long-term changes mean for the reverence and
respect at the heart of family life. A caregiver might struggle
with finding the proper balance between caring for her parents and
rearing her children, and ask whether a particular ailment at a
late stage of dementia is nature's way of restoring the balance,
to be accepted rather than opposed. Or a caregiver might recognize
the moral gift to her children of seeing firsthand what it means
to care for an elderly person, what it means to love another in
the gravest need, and what it means to appreciate the blessings
of health in the face of disease and death.
There is no doubt that caring for a person with dementia imposes
real burdens on the caregiving family-on the old, the middle-aged,
and the young alike. But it is not always so easy to discern the
meaning of those burdens, or to envision what would happen to the
family bond if the old were left to die in the name of the young
and promising, or the weak left to die in the name of the strong
and flourishing.
3. The Good of Society.
Most individuals, when making decisions at the bedside about how
to care for loved ones, do not decide what is best here-and-now
by thinking about what is best for the whole society in general.
But as we have noted, family members are rarely the only actors
in this drama: there are the doctors, hospitals, and nursing homes
who make recommendations about best care; there are insurance companies
and governments that pay a large fraction of health care and long-term
care costs for the elderly and that decide what they will pay for;
there is the larger polity that must weigh these goods against other
civic goods; and there are the fundamental values of society, such
as nurturing the young, securing the equal rights of all, and protecting
the vulnerable from harm. Thus, although individuals may not aim
at the good of society in making decisions, society as a whole establishes
conditions that powerfully influence and constrain those decisions-including
the influence of law and culture on the ethical intuitions of the
individuals who bear the responsibility of care.
Just as families face hard economic decisions and trade-offs,
so too does the larger community. Wealthy societies may be able
to build both nursing homes and nursery schools, but even the wealthiest
societies cannot do everything imaginable for everyone; they cannot
maximize the well-being of all individuals all of the time. Yet
how our society deals with these hard choices will both reflect
and shape our character, both for better and for worse. What kind
of society would we be if we left the elderly with dementia (and
their families) to fend wholly for themselves? But what kind of
society would we be if public subsidies for long-term care or heroic
medical interventions for the elderly were financed by drastic cuts
in educating the young or securing the peace?
To the broad question of society's "contract" with the elderly,
one can envision a broad range of answers regarding their medical
care. Some might argue that society should enact certain mandatory
standards for non-treatment or public rationing, on the grounds
that we should not divert valuable health care resources to care
for those with a "low quality of life" and little time left. Others
might argue that, because respect for the equal dignity and worth
of all persons is a central value of our democratic society, we
must ensure that this value is publicly affirmed rather than undermined
by age-based or capacity-based rationing of health care. Still others
might argue that we should change our priorities for the elderly,
shifting resources from heroic measures of emergency rescue to support
daily programs such as Meals on Wheels and in-home care.4
Finally, some might argue that the best way for society to deal
with such ethically fraught matters is through a procedural solution-allowing
individuals and families maximum possible freedom to decide what
is best for themselves, while preserving tolerance for different
worldviews and civic peace within society as a whole.
There is surely a partial wisdom in seeking to set social limits
on treatment, say by deciding as a society what medical procedures
we will not publicly fund for those nearing death. This policy faces
up to the reality of mortality, the passing of the generations,
the limits on our resources, and the interconnectedness of all social
goods. It acknowledges the potential danger of neglecting the young
in caring for elderly persons entering upon a long "second childhood."
But rationing resources for debilitated or demented persons risks
dehumanizing them-by treating them as public burdens, as non-members
of society, whose claim on us is limited by their very weakness
and dependence. Such a policy might directly or indirectly impose
death as "the best treatment" even in cases where a simple medical
intervention would benefit the life a person with dementia still
has. It might unjustly burden the poor, by excluding certain treatments
from Medicare or Medicaid coverage that the wealthy could purchase
with private funds. Or it might perversely alter the role of the
state, by making certain therapies illegal across the board for
certain classes of patients, rich and poor alike.
Of course, as a society we need to reflect on how to set limits,
lest we allow the urgency of life-and-death medicine for the elderly
to always trump the seemingly less urgent but no less important
obligations and aspirations of society as a whole. In the face of
limited resources, growing needs for ever-more-expensive long-term
care, and the dwindling ranks of voluntary caregivers, we will be
unable to escape difficult choices in setting priorities. But the
effort to set limits can also lead to some socially pernicious results,
separating citizens, by state mandate, into the eligible and the
ineligible, the "still worthy" and the "no longer worth it."
There is also a partial wisdom in seeking a procedural solution,
one that leaves caregiving decisions as much as possible to individual
families. And yet, as discussed above, a policy of autonomy without
limits offers little guidance to patients and caregivers about how
to exercise their freedom. And it fails to confront the potentially
dehumanizing excesses of autonomy itself-including the possibility
of seeing one's own life as less valuable than it truly is. Moreover,
a policy built on self-determination alone offers little guidance
about what society owes its dependent members, and what its dependent
members owe society.
What we discern, in the end, is that setting social policy in
this area is no easy task, especially as it bears on individual
cases at the bedside, where prudent judgment about the particulars
is always needed. The principle that persons with dementia possess
human dignity equal to non-demented persons provides an essential
moral foundation for a caring and caregiving society. It means that
individual caregivers and public policymakers should not see the
disability of dementia by itself as a reason for discrimination
or as legitimate grounds for the denial of equal treatment. It means
that certain kinds of actions-like active euthanasia or a system
of rationing that discriminated explicitly against dementia patients-should
be morally off limits.
But this principle of equality does not in itself settle the hardest
practical dilemmas faced by individuals, families, and citizens.
Equal human dignity does not mean identical treatment; it simply
means treating every human being as equally worthy of care, and
then discerning what this human being, under these circumstances,
requires and deserves. For family caregivers and medical professionals
in the clinical setting, the task of loving prudence is to sort
out, within certain moral boundaries, what the best course of action
or non-action is for the person now here. And for society as a whole,
the challenge is defending the dignity of persons with dementia
in a human world where resources are always limited and where caring
for the needy is not the only human good. In addition, the principle
of equal human dignity, in itself, says nothing about what obligations
persons with dementia (in its early stages) may still have to the
society of which they are part, including generosity toward and
concern for generations yet to come.
Perhaps our greatest social obligation is toward the large number
of people who do not have family caregivers and thus rely on the
community to stand with them and speak for them. This obligation
is all the more reason why a strictly legalistic solution, like
advance directives or even durable power of attorney, will not be
adequate. And this is why there is good reason to lay out, for strangers
taking care of strangers, what "best care" for the patient here-and-now
might require.
4. Best Care for the Person Now Here.
If the goal of caregiving is to provide the best care possible
for the person with dementia now here, then it is important to try
to see the world as the person with dementia sees it, and to ensure
that we do not allow our own discomfort with his or her diminished
capacity to become the scale we use to measure his or her worth.
Surely, we need to improve our understanding of life-as-lived by
persons with dementia; we need to probe the meaning of experiences
that might make little sense to us-such as reading books without
paying attention to the order of the pages-but often give persons
with dementia experiential pleasure. More deeply, we need to see
the person with dementia as more than simply an individual with
interests for himself, but as someone whose life has meaning for
others. Sometimes this means seeing the value of a disabled person's
life even when being alive may no longer seem like a benefit to
the disabled person himself.
People who contend that caregiving ought to serve the "best interests"
of the patient rightfully seek to put the present patient at the
center of caregiving decisions. But to speak of "interests" alone
also seems somewhat impoverished: human beings are not simply collections
of interests, but whole persons whose lives are intertwined with
others, lives that have meaning even when their interests seem limited
and even when their life options have shrunk significantly. In this,
the proper aim is not simply "best interests" but "best care" for
the well-being of this patient, under these circumstances,
at this time.
Yet even as we try to empathize with persons who suffer dementia
and see them as human beings with equal dignity and worth, we also
cannot lose sight of the deprivations that dementia often or eventually
brings: the loss of modesty and self-control; the outbursts of anger;
the descent into mindlessness; the physical discomfort; the need
for diapers or physical restraints. Seeing the good of a life with
moderate or severe dementia often means seeing the worth of a life
that has been stripped of many worthwhile and dignified things.
We need to see both the dignity of the person and the indignity
of the disease.
Approaching caregiving decisions in this way brings us to the
core question: How do we benefit the life this person now has-even
if it is not the life the person would have chosen for himself?
This straightforward question does not always have a straightforward
answer. Surely physical well-being is central to the obligation
of best care, and so finding ways to ease suffering and treat physical
ailments as they arise-broken hips, pneumonia, urinary tract infections-would
have a strong moral claim. But there are other claims that must
also be considered, going beyond the present good of the body. Does
one benefit the life a person now has by trying to prevent an excessively
painful or degrading death, even if it means accepting an earlier
death? Does one benefit the life a person now has by extending an
existence marked mostly by physical and emotional misery? Does one
benefit the life the Alzheimer's patient now has by forgoing life-extending
treatment, so that he might finish life with some remnant of past
nobility and self-awareness intact and while his presence still
awakens reverence rather than repugnance in his grandchildren?
Surely, different people will see the good of the person with
dementia in different terms; they will value different factors differently.
To repeat, best care does not always mean that there is only a single
right choice in every case. But doing our "best" for each patient
should always be our guiding aspiration, and thus a check on the
tendency to lower our standards and seek only what is "good enough"
rather than what is "best under the circumstances." Caregivers must
resist the temptation to do what is best or most comfortable for
themselves in the false name of doing what is best for the patient,
and they must avoid projecting their own wishes, prejudices, or
burdens onto the patient.vi
Spirit and motivation matter in these decisions, and two decisions
that look very similar may have a profoundly different meaning when
seen in their totality. But in the end, all decisions should operate
within a shared moral framework-one that recognizes the deprivations
of dementia, the limitations on family and social resources, and
the significance of a person's prior wishes, but which never defines
life with dementia as "life unworthy of life" and never sees causing
death as a morally choice-worthy means to the end of easing suffering.
After all, it is self-contradictory to propose to "care" for any
patient by making him dead; and it is hard to think wholeheartedly
about best care if one morally eligible option is to ease the suffering
person out of existence.
To sum up: Caregivers should be guided primarily by a moral obligation
and an ethical disposition to care always, and by an appreciation
of the particular current needs and circumstances of each person
now in their care. We should seek to provide the best care possible,
case by case, situation by situation, but always within certain
universal moral boundaries. In what follows, we expand our consideration
of the moral guidelines and moral boundaries that should guide caregivers,
before taking up some difficult yet paradigmatic clinical cases.
B. Moral Guidelines As we have already
indicated, the discernment of best care for any particular patient,
here and now, is the work of prudent deliberation and judgment.
Because the variables are so numerous, person by person and circumstance
by circumstance, it is impossible to reduce prudence to precise
rules or to write programs for wise decision-making. Nevertheless,
our tradition of medical ethics, reflecting on the character of
human action and on the caregiving dilemmas of interest to this
report, has articulated certain crucial concepts and distinctions
to guide prudent thinking: negatively, to set some moral
boundaries beyond which prudence cannot rightly go; positively,
to clarify the target at which prudence should rightly aim. Such
ethical concepts and distinctions are both necessary and perilous.
They are necessary, because we need to see ethical decisions in
their proper light, and we need to erect certain protections against
doing harm, even-or especially-with good intentions. But they are
also perilous, because there is always a risk of turning a concrete
human situation into an abstract case and of adhering narrowly to
general principles without discerning the best care possible for
each particular patient.
Below, we consider four moral distinctions or concepts that have
been used to try to distinguish between what is morally required,
what is morally forbidden, and what is morally optional. These are:
(1) ordinary and extraordinary care; (2) acts of commission and
acts of omission; (3) the motives, intended deeds, and results of
a human action; and (4) the burden of treatment imposed by human
action and the burdens of disability and disease imposed by nature.5
Out of this analysis, we will then formulate the operative moral
boundaries that should guide us in actual cases.
1. Ordinary and Extraordinary Care.
In formal discussions of medical ethics, the terms "ordinary"
and "extraordinary" care have been commonly used to think about
whether to initiate, continue, or cease particular medical treatments,
ordinary care being considered mandatory, extraordinary care being
considered optional. But defining these terms is something of a
challenge. People sometimes apply these terms to the medical technique
or intervention itself, where ordinary can mean reliable
("it works"), common ("part of standard medical practice"),
easy ("not distressing to the patient"), simple ("unsophisticated
and easy to administer"), affordable ("not unduly expensive"),
or easily available ("near at hand, not requiring much travel
to get it").
In the discourse of medical ethics, the terms "ordinary" treatment
and "extraordinary" treatment acquired a more precise and technical
meaning, referring specifically to the intervention as it relates
to a particular ailing person.6
Thus, the operative meaning of these terms becomes relative to each
case, often differing dramatically for different patients. For example,
it seems relatively "ordinary" for a vigorous middle-aged man with
decent health insurance to get coronary artery bypass surgery at
the first-rate medical center near his home; for a frail old man
with the same heart condition but lacking medical insurance and
living far from any medical center, bypass surgery would probably
be deemed "extraordinary." For the first person, the surgery is
readily available and affordable without upending his entire domestic
life; for the second, the surgery would create burdens so great
that it becomes virtually beyond reach. The surgery itself imposes
physical burdens that are not exactly "ordinary" ("easy to take")
even for the first person, but also not so "extraordinary" that
living with and through them is too onerous to endure. As a person
ages, however, the burdens of surgery and post-operative recovery
increase, and the once "ordinary" treatment becomes increasingly
"extraordinary," because it becomes increasingly burdensome and
risky to the patient.
To generalize: A proposed treatment could be reliable, common,
simple, affordable, and readily available, yet be regarded as "extraordinary"
for a given patient. For despite being ordinary in all those ways,
the proposed treatment could still be useless for the patient-or,
even if possibly useful, quite burdensome. Treatments that are either
"useless" or "excessively burdensome" for a particular patient,
however ordinary they might otherwise seem, are in the ethical sense
"extraordinary"-above and beyond what is morally required. As such
they may be accepted or declined, and in some cases they should
clearly be declined for the good of the patient.
At one time, medical ethicists relied a great deal on this distinction,
and it was the staple of Roman Catholic casuistry on this subject.7
Today, this distinction is much less frequently used by doctors
and ethicists. And because "extraordinary"-meaning "ethically optional"-treatment
really translates into "excessively burdensome" or "useless" treatment,
we might be better off working directly with those terms, seeing
as they focus our attention more precisely on the well-being of
the patients and thus on the kinds of concerns that are always of
central moral significance.vii
2. Acts of Commission and Acts of Omission.
Another common distinction used in thinking about life-sustaining
or life-ending treatments is that between acts of commission
and acts of omission. Whereas "ordinary" and "extraordinary"
focus on what counts morally in balancing benefits and burdens for
the patient, this distinction focuses on the deeds of the moral
agent who elects, provides, or forgoes the treatment. In the
clinical context, acts of commission involve the deliberate, active
use of some agent (like a drug, machine, or surgical technique)
to alter the life-course of the patient. Acts of omission involve
the deliberate decision not to intervene in the life-course
of a patient.
Clear as this basic distinction may seem, however, its meaning
is often far from obvious and its moral usefulness is, at most,
partial. Analysis of the meaning of an "act" or "action" is an extraordinarily
complex matter, to which we can hardly do justice here. A few observations
are, however, especially germane. First, a human action is more
than a spontaneous reflex or a slice of behavior. The description
of an act itself-what the person does-is governed
by the person's intention (by his "plan of action"), both as to
ends and means. In addition, the same action (or plan of action)
may be done from many different motives and in order to accomplish
many different results. All of these aspects count in any ethical
analysis of our deeds, and their evaluation depends on more than
the distinction between doing and not doing: if undertaken with
wrongful intention, all deeds-whether of commission or omission-may
be judged adversely.
Second, if not acting is a choice made by conscious decision,
this omission is itself a moral act with moral significance, and
those who so choose are often as morally responsible for not
doing as those who choose to act are responsible for doing. In cases
such as the ones of interest to this report, people sometimes take
refuge in the distinction between omission and commission, as if
it were an easy way of distinguishing between what is morally permissible
or praiseworthy and what is not. That is probably more weight than
the distinction by itself can bear.
Third, the moral meaning of the same act of commission (or of
the same act of omission) can differ, owing to the predictability
or non-predictability of the outcome. In some cases, we can
know with virtual certainty that intervening will sustain (or end)
life or that not intervening means that the patient's life will
end. In other cases, we can only know the likely, or probable, or
potential outcome of acting or not acting. Where omitting an action
is certain to produce death (for example, not providing artificial
nutrition and hydration to a person in a coma), it will be evaluated
differently than when the outcome of the omission is uncertain (for
example, not inserting a feeding tube into a dimly conscious person
who can still be spoon fed).
Commission and omission seem to be ends of a spectrum rather than
either/or categories of action. There are clear acts of commission-such
as treating pneumonia with antibiotics or killing a patient by administering
some lethal agent. There are clear acts of omission-such
as allowing a patient to die of infection by electing not to treat.
In between are actions that are harder to classify as commissions
or omissions. Some actions remove treatments already underway-for
example, turning off a respirator or removing a feeding tube. Others
cease periodic treatments-for example, stopping blood transfusions
or ceasing dialysis.
It scarcely makes sense to label every failure or refusal to act
as itself a form of action; our responsibility as actors depends
on the circumstances. Clearly, some behaviors-such as failing to
wish a stranger a happy birthday-are unlikely to be termed acts
of omission; for in almost all circumstances they would not be regarded
as acts of any kind. Other behaviors-like forgetting to wish
one's mother a happy birthday-may or may not be acts of omission,
and may or may not be blameworthy, depending on the circumstances.
In the medical context, a decision not to intervene-especially after
clinical assessment of what intervention versus non-intervention
likely means for the patient-is not simply an omission but a deliberately
chosen omission. Physicians have a legally defined affirmative
duty to act in medically appropriate cases; in such cases their
decision not to act when they are duty bound to do so becomes a
culpable omission.
Despite these ambiguities and complexities, the distinction between
commission and omission does still possess some moral significance,
mainly in the two common situations in which the difference between
acting and not-acting is thought to be especially relevant: (a)
the difference between stopping and not starting treatment (where
the distinction may make, morally speaking, only a symbolic and
psychological difference), and (b) the difference between active
killing and letting die (where the distinction makes considerable-but
not complete-intrinsic moral difference).
a. Never beginning treatment versus ceasing/removing a treatment-in-process.
Is there a moral difference between never beginning a treatment
at all and ending a treatment already begun? (There may sometimes
be a legal difference, but we limit ourselves here to the moral
question.) We can imagine a case in which, though there might have
been some initial reason never to begin a treatment, that reason
ceases to be significant once the treatment has been in place for
a time. For example, a patient might strongly resist the initial
insertion of a feeding tube, but eventually grow physically accustomed
or at least un-resistant to it. Conversely, there might be cases
in which an intervention (believed to be temporary) is begun in
the hopes of improving a patient's condition, but where improvement
never comes and the continuation of the intervention, now necessary
to sustain life, has become a serious burden for the patient.
There is surely symbolic and psychological importance to ceasing
an ongoing treatment, especially where one knows in advance that
the likely consequence of doing so is imminent death. If we withdraw
treatment in such a case, we may more readily think of ourselves
as having caused the patient's death or, at least, as having initiated
the irreversible process of the person's dying. In forgoing a new
treatment, one does not alter the status quo of the patient; in
acting to end a treatment-in-process, one deliberately alters the
status quo, and the consequence of such alteration may be lethal.
In many cases, however, there is little or no intrinsic moral
difference between these two kinds of acts-never beginning treatment
and ceasing treatment already begun-and in both cases, the actual
cause of death is not the caregiver's action or non-action
but the underlying disease-in-process.viii
Yet it is natural that we experience ourselves as causal agents
more strongly when we withdraw a treatment already begun than when
we decide never to begin a treatment at all. And it is surely important
for all concerned that physicians not seem to be intending to cause
a patient's death when they rightly elect to discontinue treatment
that, after a trial, has become futile or excessively burdensome.
But in the end, this distinction, though relevant, is hardly decisive,
neither medically nor (especially) ethically. Much will depend on
the condition of the patient, the nature of the disease, and the
particular type of treatment in question: Is it burdensome? Will
it work? Can we know before we try? What matters most is not whether
a decision forgoes treatment in advance or removes treatment-in-process,
but the moral and human aim of the decision to begin, cease, or
never begin a particular treatment. Whether the action is leaving
a disease untreated or ending a treatment already begun, the question
is always: Am I benefiting the life the patient now has by acting
in this way?
b. Active killing versus letting die.Medical ethics
has long insisted on the moral difference between taking deliberate
positive measures to bring about the death of a patient and letting
a patient die of "natural causes." To be sure, medicine generally
seeks to oppose death by natural causes and to correct or restrain
the biological causes of debility and mortality. But caregivers
must also, eventually, "let die" those entrusted to their care,
if only because every patient eventually dies, medicine or no medicine.
"Letting die" is thus always part of caregiving.
The question, therefore, is not whether to accept natural
death, but how and when to do so. What matters morally
is discerning when it is appropriate to "let die," even in cases
where the means to oppose death and extend life still exist, but
where using such means may not benefit the life the person still
has. Extending life is not the only way to benefit a person's life,
and length of life is not the only good worthy of the caregiver's
consideration. And so, in some cases, letting a patient die "earlier
than necessary" is morally sound or even morally obligatory, if
the available ways of extending life are themselves morally problematic.
By contrast, taking active measures to end a patient's life, even
if such measures are taken with the best of motives, is always difficult
(or impossible) to reconcile with the ethics of caregiving. Active
killing, even when motivated by a desire to end bodily or psychic
pain, makes caregivers the final masters and arbiters of life and
death for the person entrusted to their care. It denies the patient's
right to life. It breaks the state's monopoly on the legitimate
use of lethal force. It makes some doctors sometimes executioners,
calling into question their trustworthiness always to serve the
patient's good. Wielding such power is deeply antithetical to the
practice of medicine and the vocation of doctors, who are called
to serve the patient until the very end. As the Hippocratic Oath
already put it: "I will neither give a deadly drug to anybody if
asked for it, nor will I make a suggestion to this effect. . . .
In purity and holiness I will guard my life and my art."8
Serving the patient does not mean extending life at all costs;
doctors are not only in the business of curing but also in
the business of caring, which sometimes means accepting a
shorter, more comfortable life. But even when doctors and caregivers
surrender to death, this surrender honors our humanity best when
it steadily affirms the life of even a dying person and when
it steadfastly refuses to abandon the person in his dying.
To end a person's life is to abandon that life. Active killing-even
out of mercy-is not the giving of care.
Although the distinction between "letting die" and "active killing"
is morally significant, it is not by itself morally decisive. For
although active killing is always off limits, letting die is not
always permissible or praiseworthy. As in all of our chosen actions,
the moral quality of the action taken (or omitted) will be shaped
by the reasons for taking it; hence, we must consider the
moral weight of those reasons. If one deliberately omits treatment
so that a patient will die, such a choice seems morally little
different from intervening actively to end the patient's life. True,
by not moving from deadly intention to overt deadly deed, an act
of omission aiming at death does not put doctors and caregivers
in the perverse position of being the actual cause of death. And,
by leaving the patient at the mercy of nature and his diseases,
it does not guarantee or manage with precision a particular moment
of death, a death-on-demand. To this extent, the harm to all of
us-as a society devoted to caring for one another-is much greater
in the case of active killing. At the same time, however, the wrong
done to the dying person may be morally the same, if, either by
omission or commission, we betray the patient by aiming at his
death. In the one case (active killing) we use a lethal agent
of our own devising as the means; in the other case (letting die
where death itself is the aim) we use disease as the means of achieving
a death we seek but do not cause.
Nevertheless, even if the distinction between active killing and
letting die does not solve all our difficulties (as just noted,
it does not help us discern the difference between morally sound
and morally problematic instances of letting die), the distinction
remains morally important, and the condemnation of active killing
that it implies is ethically crucial. For example, we might in good
conscience remove a respirator from a patient in the final stages
of brain cancer so that he can die a more peaceful death unburdened
by the machinery. But we should not give a patient in the final
stages of brain cancer a lethal injection so that he will die a
more peaceful death. (Instead, we would rely only on improved pain
management, including, if necessary, heavy sedation.)
A death resulting from "letting die" (withdrawing the respirator)
and a death resulting from "active killing" (giving a lethal injection)
might follow a roughly similar trajectory and would reach the same
outcome, and they might therefore seem similar, at least from the
perspective of the dying patient (or those for whom, mistakenly,
only the end result counts). But for us, as a society of caregivers,
the two deeds would have a morally different meaning and morally
different implications. We need to trust that our healers will never
turn into our killers; we need shared limits to prevent deliberate
harm to the vulnerable. We need to cultivate a society of caregivers
who will never think of eliminating a patient in order to avoid
the trouble of caring for him. For both ethical and prudential reasons,
therefore, we must preserve the line between active killing and
letting die, knowing that this distinction may not always be morally
sufficient or morally satisfying in real-life cases.
Embedded in this distinction between (a forbidden) "active killing"
and (a permitted or approved) "letting die" is a deeper distinction
between wrongs and harms, and more precisely, between
wrongs that we ourselves commit and harms that "nature"
inflicts. It acknowledges that there are ills we cannot relieve
as quickly and completely as we might wish-at least without doing
injury in the process. There will, of course, be at least some moments-for
example, when continued life of one who is suffering seems itself
an unrelieved misery-in which we wonder why we should respect the
boundary (that forbids active killing while approving letting die)
firmly established in our medical and moral tradition. Exactly when
we ourselves are distressed by our own inability to relieve suffering,
we are understandably most tempted to set aside this distinction
and end suffering by "ending" the patient who suffers. We might
even try to persuade ourselves that we are in fact not aiming at
the patient's death but merely at his suffering.
Such wrenching human situations often lead caregivers into confusion
and anguish, with mixed and complicated emotions: we desire to keep
a loved one alive yet want her suffering to end; we fear that not
doing "everything" means that we are guilty of betrayal yet we worry
that prolonging life in such a condition is a form of torture; we
want what is best for those we cherish but we are exhausted and
anguished ourselves. Under such circumstances, caregivers may find
that the moral lines between love and betrayal, between standing
with the patient until the end and forcing the patient to endure
the worst kind of end, between compassion and cruelty, between leaving
the patient to suffer and leaving the patient to die, seem profoundly
unclear.
Yet in this murky world, the distinction between "active killing"
and "letting die" offers us one bright line-a line that keeps us
from becoming killers ourselves. Fidelity to the life we care for
requires that we not set ourselves resolutely against it, perversely
trying to help it by erasing it altogether. Caregiving that truly
cares will not annihilate its beneficiary.
Although this moral boundary should be respected in all cases,
its utility is, however, also limited. Even if we steadfastly refuse
to kill our patients and loved ones, we often still find ourselves
in morally difficult straits. Determining, for example, how and
when to accept natural death or the circumstances in which one may
ethically let a patient die requires that we attend carefully to
the motives, the intended deeds, and the goals of our actions (and
inactions), a set of distinctions to which we next turn.
3. Doing and Accomplishing: Motives, Intended Deeds, and Goals.
As already noted, every human action can be looked at and evaluated
in several different ways. One way has to do with the agent's motives.
Suppose a terminally ill man, dying of cancer, lies in his hospital
bed in considerable pain and respiratory distress. Suppose also
that another man enters the room and, in order to bring about the
patient's death, gives him a fatal overdose of morphine.
Now consider this scenario from two different angles, with two
different reasons that moved the giver of morphine to target the
patient's life. In the first scenario, the "killer" is a close friend
of the dying man. He fears for his friend the pain and anguish of
the coming weeks, desires for him a relatively peaceful death, and
gives him an overdose moved by these feelings of mercy and affection.
In the second scenario, the "killer" is an ex-friend (and now an
enemy) of the dying man. Cheated and betrayed in important matters
by the man now dying, this ex-friend is not satisfied simply to
see him die. He wants to have a hand in it, to be himself the agent
who brings about the patient's death.
If asked to evaluate the character of the two "killers," we might
find much to praise in the character of the first and much to condemn
in the character of the second. Yet, despite their very different
motives, each does the same thing: Each targets the life
of the patient and aims at his death. Hence, whatever final moral
evaluation we make of their actions, we should not deny that they
do the same thing. It would be misguided to describe the
second man's action as "killing an ex-friend" while re-describing
the first man's action as "showing mercy to a friend." To do so
blurs rather than clarifies the moral situation. Instead, if we
want to approve the first man's action and condemn the second man's,
we will have to argue that a praiseworthy motive (such as mercy)
is more important than the chosen deadly deed itself-so important
that, moved by mercy, we might rightly exercise a kind of ultimate
authority over the life of a fellow human being. But if, on the
contrary, we hold that the exercise of that kind of authority violates
the equal human worth that we prize, we would probably think that
such a motive in such circumstances should be characterized as a
temptation-understandable, to be sure, but not praiseworthy
if it moves one to perform deeds that are ethically unjustified.
We know that motives are important, and we want to give them weight
in our moral judgment, but we quite properly are reluctant to let
a praiseworthy motive by itself transform any deed, however
questionable, into the right thing to do. For regardless
of motive, what we do, and what we are willing to do, itself shapes
our character. Over time, our deeds turn us into people of a certain
sort. Judgments about what we do, therefore, carry their own independent
moral weight and should not simply be re-described in terms of our
motives.
But there is a further complication in the analysis of our actions.
We act not only because we are moved by (praiseworthy or blameworthy)
motives, but also because we have goals that we seek to achieve.
What we do is related to what we accomplish or hope to accomplish
by acting. Thus, moved by mercy, one might intentionally take a
friend's life, hoping to achieve thereby the relief of the friend's
suffering. What one does in this case is to kill; what one accomplishes
(if successful) is an end to suffering (by means of the person's
death).
The complicated connections between what we do and what
we accomplish, between the intended deed itself and the direct
or indirect results of our actions, constitute one of the enduring
problems for moral reflection.ix
On the one hand, we hardly want to say that results count for nothing,
that it matters little morally what purposes we undertake, or what
goals we try to accomplish, or what outcomes actually result from
our pursuing them. On the other hand, we are also reluctant to say
that desirable results, in and of themselves, are alone sufficient
to justify any deed that may accomplish them. Moreover, some actions
that are undertaken even with advance knowledge that bad things
may result can be morally justified, provided that the primary intention
of the action is good and that the bad consequences are not the
intended aim or goal of the action itself. (This is the so-called
principle of "double-effect": it sanctions, for example, the giving
of high doses of morphine to a terminally ill patient in order to
relieve severe pain, even though doing so increases the risk of
depressing respiration and thus hastening death.) Some of the most
wrenching of life's circumstances-including and especially in the
clinical context-arise when we can find no way to accomplish
very desirable goals other than by doing what may be wrong,
or when doing what is right seems to accomplish undesirable
results.
An act can be wrong even if it achieves good results, and an act
can be right even if some of its effects are evil. It would be wrong
to compel an unwilling and fully competent patient to receive treatment,
even if the treatment turns out to cure him (and even if he thanks
us afterward). Likewise, it would be right to give a 65-year-old
man just diagnosed with early Alzheimer's disease antibiotics for
his pneumonia, even if doing so results in more years of worsening
debility and dementia.
There are additional reasons why we should not be seduced into
making choices and evaluating judgments solely on the basis of results.
Doctors, nurses, and all caregivers daily confront the many uncertainties
that surround our attempts to accomplish what is good for patients
in need. Often we cannot say with certainty how a given disease
like dementia will progress, what the results of different possible
interventions may be, whether the course of a (certainly deadly)
disease will be swift or slow (or preempted by some other unforeseen
cause of death). To be a caregiver is to live, day after day, with
unexpected side effects, with desired results that turn out to seem
undesirable, with a recalcitrant nature that resists our attempts
to master it. These uncertainties argue for modesty on our part-and
for a respect for moral limits on what we do in our endeavor
to accomplish what we think would be good.
In any case, as will be readily apparent in the discussion of
cases in the next chapter, thinking about the complexities of care
for those who are aging, suffering from dementia, or dying will
require us to pay attention to different aspects of moral analysis:
to the motives that shape us and may sometimes tempt us, to the
goods and goals we hope to accomplish in our work as caregivers,
and to the nature of what it is we actually do (whatever our motives
or goals may be). All these features of moral analysis will play
a role in our discussion of cases; for they play a role in our effort
to live well and do well for those who rely upon us.x
4. Burdens of Treatment and Burdens of Disease.
In our discussions so far, we have frequently mentioned but not
yet explored in detail a crucial distinction: the distinction between
the burdens of a medical intervention and the burdens of living
with a disease or disability.
The burdens of medical interventions range both in degree and
in type: from the minimal pain (for most people) of drawing blood,
to the nausea caused by cancer treatments, to the pain of recovering
from major surgery, to the excruciating suffering of being treated
for major burns. Sometimes the burdens of therapy involve not bodily
pain but various limitations on human action required by treatment
or side effects caused by treatment-such as extended immobility,
restrictions on eating, or impotence as the side effect of taking
certain medications. Sometimes the burden of treatment is less the
acute burden of a single intervention, more the accumulated exhaustion
of being a permanent patient-of needing insulin shots daily or dialysis
multiple times each week for the rest of one's life in order to
continue living.
Moreover, sometimes the burdens of treatment are more psychic
than somatic-the misery of being stuck in a hospital bed, removed
from everyday life, unable to do the things one loves, temporarily
or even permanently. For many patients-especially patients with
dementia or other kinds of cognitive dysfunction-there is often
the burden that comes with not understanding a given treatment,
and therefore believing that caregivers are intervening against
them rather than for them. And-though it must be evaluated somewhat
differently if our practice of medicine is to remain patient-centered-there
are also the burdens of treatment endured by the caregivers: the
personal burden of arranging for medical care, the economic burden
of paying for medical care, and the emotional burden of continuing
medical care, especially when there is little or no hope of recovery.
Of course, the same treatment will burden different patients very
differently-depending on age, strength, tolerance for pain, the
level of support from friends and family, and the quality and skill
of physicians and nurses. There is no simple formula for deciding
which treatments are excessively or unduly burdensome. We cannot
make such judgments based entirely on the treatment itself, but
only the treatment as applied or not applied to a particular patient.
But what is crucial to remember about the burdens of treatment
is that they-in contrast to the burdens of the disease or disability
we treat-are always produced or imposed by the caregivers themselves,
not by nature or chance. The treatment itself always aims to make
things better for the patient. But sometimes the effort to improve
a patient's long-term condition makes the patient's current condition
notably worse; sometimes intervening to fight a deadly disease itself
imposes such excessive suffering that the treatment harms the life
the patient has now, even if it might delay the patient's death
a little longer. As caregivers, decisions about treatment always
fall within the realm of our moral responsibility; it is the realm
in which we decide what we owe the patient. It is the realm in which
we exert greatest control and therefore have greatest responsibility-if
never perfect control (treatment is limited and often unpredictable)
and never perfect responsibility (the obligation to care for the
patient does not make us responsible for every burden the patient
confronts).
As we think about what it means for a treatment to be "burdensome"
and thus what our obligations as caregivers are, we need a more
developed typology of different ways in which burdens may be related
to treatments. Specifically, there are: (i) treatments that are
excessively burdensome; (ii) treatments that are not excessively
burdensome but prolong a life marked by the terrible burdens of
current disease; (iii) treatments that are not excessively burdensome
but prolong a life where the terrible burdens of a disease in-process
seem likely to increase greatly in the near or distant future; and
(iv) treatments that ease a current burden but prolong a life marked
by other existing or likely future burdens.
One of the most difficult situations is precisely when a relatively
non-burdensome treatment can prolong a life marked by great hardship
or looming misery. From the patient's perspective, after all, suffering
is suffering, and the burdens caused by nature and chance seem-assuffered
burdens-no different from the burdens caused by intervention.xii
So why is it that medical ethics holds that it is morally permissible
to withhold burdensome treatments but morally wrong to withhold
useful, non-burdensome treatments so that a life marked by
terrible burdens will more likely come to a swifter end? This difficult
question prompts three kinds of answers or reflections.
First, medical interventions are concrete human acts for which
we bear clear responsibility as human agents; by contrast, those
diseases imposed by nature are not produced by human action. We
are fully responsible for our acts; we are not fully responsible
for the burdens life itself sometimes brings (even though we may
be deeply dismayed by such burdens in our own life or that of others).
In training ourselves to distinguish between the burdens produced
by treatment and those brought by life, we are searching for a way
to turn against burdensome treatments without simultaneously turning
against the life of a fellow human being.
Second, although we are not responsible for the possible, probable,
or likely future miseries that befall those whose lives we sustain
by intervening medically to benefit the patient's present life,
we must acknowledge that we act knowing and accepting
the consequences or potential consequences of our interventions,
even if we are not fully responsible for them.
Finally, we should acknowledge the frustration we may experience
when we seem obligated to let a humanly indifferent nature "take
its course" while prohibiting certain human acts-like actively ending
a painful life or deliberately seeking the end of life by an act
of omission-that might relieve the burdens of chance. We should
expect that we will continue to be troubled by the fact that our
medical and moral tradition holds that there are some burdens we
cannot rightly relieve entirely (if the only means to do so is turning
against not just a treatment but a life). We will and should suffer
at the suffering of others to whose care we are committed. Yet we
should remember that aiming at a person's death is always a kind
of betrayal; standing with the suffering person, in the hardest
times, is not-even if we might rage together with the patient at
the God, or nature, or universe that permits such misery, and even
if we pray with the patient for an end to a painful life that is
nevertheless not ours to end.
C. Moral Boundaries The foregoing discussion
of these various moral distinctions has shown, we believe, why it
is difficult to state precisely how to define "best care" when patients
who are suffering greatly are candidates for treatments that might
extend their life, especially when such patients cannot choose for
themselves and are entirely (or largely) in the hands of their caregivers.
There are no simple formulae to guide us, and no algorithms for
calculating the relative weights of benefits and harms. Seeking
the best care possible will always require the wise and prudent
judgment of the people on the spot: spouses and children, guardians
and friends, doctors and nurses, social workers and hospice professionals.
Yet prudence needs help from principle. Our ability to seek wholeheartedly
for the best care possible under often very sad circumstances is
immeasurably enhanced by the existence of certain moral boundaries
that define the limits of possible choices and that prevent us from
erring greatly when we are overcome with frustration, exhaustion,
or moral confusion. These moral boundaries are in fact entirely
in line with our medical-moral traditions, frequently renewed by
reflection and adjustment through changing times. They are by no
means the whole truth that prudence seeks to discern. Although they
set boundaries to our deliberation and possible choices, they provide
no formula for best care in particular cases. Further thought and
reflection will be required to discern what we owe those for whom
we must care.
We recognize that we are entering on perhaps unprecedented times,
the age of a mass geriatric society, with hundreds of thousands
of people no longer able to care for themselves and unable to decide
what kind of medical care they in fact want. We also recognize that
there will likely be great pressure to alter these boundaries, as
frustrated and unhappy caregivers look for easier ways out of the
sad fate of having to expend mountains of care on persons who will
only sink further into their prolonged and degrading decline. But
relying partly on the strength of the moral exploration just completed,
partly on the evident good moral sense of the boundaries themselves,
we present the following moral boundaries as rules to guide prudent
caregivers in action:
- No active killing or assisted killing of another, no matter
how painful or diminished a life has become
- No aiming at death as a purpose of action, whether by acts
of commission or omission
- No imposing excessively burdensome treatments on others
- No obligation to do what we cannot do in the role of
caregiver, but the obligation to see how much we can do
without destroying or deforming everything else in our lives (we
will analyze this moral precept more fully below)
We can also state the clear grounds for forgoing life-sustaining
care:
- When the treatment itself is excessively burdensome for the
patient
- When the treatment is useless
- When a better death is possible in circumstances where death
is proximate (for example, by allowing an irretrievably dying
patient to remain at home in the company of family rather than
go to the hospital)
As we have already noted, respecting these boundaries does not
suffice to reach the concrete conclusion of what constitutes best
care in individual cases. And as we shall soon demonstrate, we recognize
that there will be hard cases that put our ability to abide by these
rules to the test. Still, we think that these boundaries will and
should guide us as we struggle to keep faith with the duty to care
and as prudence guides us to act affirmatively in the service of
our loved ones' well-being.
Before leaving the general considerations of caregiving to examine
concrete cases, we should emphasize that ethical caregiving is not
primarily about following rules of right conduct or observing moral
boundaries, important though these are. It is primarily about creating
the disposition to care and cultivating the habits of caring, often
in the face of great obstacles and at the cost of considerable time
and resources. Ethical reflection of the sort engaged in here cannot,
by itself, produce the requisite traits of character, neither in
individuals and families nor in the larger community. But it can
begin to sharpen the gaze and deepen the understanding, without
which even a good heart can sometimes be led astray. By pointing
us to the proper target-best care-and by showing us the limits of
proper conduct, these theoretical discussions, admittedly far from
both public policy and the daily practice of medicine and nursing,
can improve our aim and limit our failings as we try to meet our
obligations, case by case, thereby manifesting and acquiring the
caring character so indispensable to the task ahead.
_________________
Footnotes
i. Death is,
of course, a natural part of life, or, more precisely, the natural
termination of life, giving life its finite character. But humanly
speaking, it is not simply or merely a "natural
part of life."
ii. Self-destruction
is not an issue for caregivers dealing with dementia patients
who have lost self-awareness and who can no longer care for
themselves. True, as we pointed out in Chapter 1, suicidal thoughts
do occur to some patients with early Alzheimer's disease,
despairing of their future. But as we also pointed out, this
is generally the result of an overlaid depression, and with
the aid of a discerning physician and anti-depressant medications
these desperate patients commonly throw off their depression
and their suicidal thoughts. The failure to diagnose and treat
depression-often the result of despair that afflicts the patient's
family even more than it afflicts the patient-is a common and
grave error in caring for patients with dementia.
iii. Appealing
as it might sound, Xenophon's description of the good death
also raises many questions: If we are still sound of body and
mind, can we ever really accept death with tranquility? And
if we are still a source of happiness to our friends, would
they let us "fade away" if they had the power to keep us going?
Do human beings deserve the most tranquil death? Or is death,
in some ways, the very opposite of tranquility-a nasty robbery
of life, to which we can surrender gracefully but never happily?
And what is the meaning of the fact that the peaceful death
here described (the death of Socrates) is brought about by deliberate-or
deliberately imposed-human action (that is, by the drinking
of hemlock)? Nevertheless, Xenophon is clearly on to something:
a peaceful death, in the right season, is for most of us the
best we can humanly hope for.
iv. We will
discuss some of these boundaries later in this chapter.
v. We are well
aware that many people in need of home or institutional care
have no family members-or no dependable family members-who
are able to care for them. In these cases, family well-being
is, of course, not a relevant goal of caregiving.
vi.At the same
time, potential patients should not seek a guarantee, long in
advance, that they will "never be a burden" to their loved ones
and thus look for ways to orchestrate an early exit, especially
when those loved ones would rather bear the burdens of care
than the burden of not being permitted to care.
vii.We take
up the subject of "burdensomeness" below.
viii. A good
case can be made that a deliberately limited trial of
therapy is morally better than not starting it, because it permits
a realistic assessment-and not just a guess-of the merits of
the treatment for the particular patient. To avoid the trap
of not being able to stop what has been started, some physicians
now place a time (or other) limit on the treatment at the
time it is begun. For example, they order tube feeding "for
three days," with evaluation to follow the trial. If it is then
deemed unlikely to do good, it stops "automatically." (We owe
this information to Dr. Joanne Lynn.)
ix. Strictly
speaking, there is a difference between the goals and
the results of our actions: our goal (that is, our wished-for
end) might be to accomplish a certain desired result, but the
actual result might turn out to be other than what we wished
for.
x. This moral
analysis is most difficult in those cases in which the relationships
among our motive, our chosen deed, and our desired
result are most complicated. In some cases, these different
elements of human action are clear: The doctor who gives a patient
a lethal injection clearly aims at the person's death in undertaking
such an action. Death is the aim; compassion is the motive;
and an end to the patient's suffering is the desired goal and
the accomplished result (along with a dead patient). By contrast,
the doctor who withdraws a life-sustaining but unbearably painful
or distressing treatment foresees death as a possible (indirect)
result of his action, but in seeking to remove the suffering
his own treatment has caused, he does not aim at death.
Stopping a painful treatment is the aim of action; benefiting
the life the patient still has is the motive; and greater peace
and comfort (notwithstanding the risk of an earlier death) is
the desired result.
In other cases, however, the relationship between
our motives, our chosen deeds, and the goals or results of our
actions is far more complicated. This is especially the case
in trying to describe and understand certain acts of omission,
where caregivers elect not to treat a deadly or potentially
deadly ailment even when the treatment itself is not burdensome
and might be efficacious in treating the ailment in question.
Confronted with a life marked by terrible suffering or in the
end stages of disease, the motive for not treating may be the
desire to provide the best care possible to the suffering patient
as a whole, rather than pursuing the most effective strategy
for acting against a particular treatable co-morbidity. But
how, precisely, shall we characterize the aim of not
giving treatment: "The death of the patient?" "The refusal to
continue extending his miseries?" "A life with fewer burdens
until its natural end?" (Note continues on next page.)
Do we necessarily aim at death by not treating?
Is "aiming at death" really the best way to describe what loving
physicians and family members do in such a case, especially
those who are administering care simultaneously in many other
ways? Or do caregivers aim at a life with fewer burdens until
its natural end, a life where nature is allowed to take its
final course, a life where excessive suffering is not unnecessarily
extended by our own interventions? This is indeed the hardest
kind of case. In one sense, it seems impossible to describe
withholding such life-preserving treatment as anything other
than aiming at death, on the tacit premise that the patient
is "better off dead." And yet, the overall human description
of such a decision to "let go" or "let die" seems different
than taking active measures to kill. This is a dilemma we will
confront in greater detail in the particular cases that follow
in Chapter 4.
xi. Of course,
a person's attitude toward the fact of his having to
suffer would be different if he thought that he was suffering
at the hands of his family rather than at the hands of nature
or fortune. But as experienced bodily suffering, the clear difference
in the cause would not manifest itself in a clear difference
in the misery or distress. And for persons with advanced dementia,
the capacity to distinguish between the burdens of disease and
the burdens of treatment is already long gone. But as we have
already indicated, one can mistreat someone even if the person
cannot know that he is being mistreated. This is why, even if
the source of his suffering matters not to the patient with
dementia, the distinction among causes is relevant for assessing
morally the actions and agency of caregivers.
_________________
ENDnotes
1. Xenophon, Apology of
Socrates I.15, translated by H. G. Dakyns, Project
Gutenberg, January 1988. Available online at http://www.gutenberg.org/etext/1171
(accessed September 5, 2005).
2. Osler,
W., The Principles and Practice of Medicine. 3rd ed. New
York: D. Appleton, 1898, pp. 108-137.
3.
See, for example, Davis, John K., "The Concept
of Precedent Autonomy," Bioethics 16: 114-133, 2002.
4. See
presentation by Dr. Joanne Lynn at the March 3, 2005 meeting of
the Council, the transcript of which is available online at http://www.bioethics.gov.
5. These
distinctions have been explored by many ethicists and some previous
advisory commissions. We note especially Paul Ramsey's pioneering
work, The Patient as Person, New Haven, CT: Yale University
Press, 1970, Chapter Three, "On (Only) Caring for the Dying,"
and a report by The President's Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research, Deciding
to Forgo Life-Sustaining Treatment, Washington, DC: U.S. Government
Printing Office, 1983. An earlier treatment of some of the issues
covered in this report resulted in The Hastings Center's Guidelines
on the Termination of Life-Sustaining Treatment and the Care of
the Dying, Bloomington, IN: Indiana University Press, 1987.
6. See,
for example, Ramsey, op. cit.
7. See,
for example, Kelly, D. F., Contemporary Catholic Health Care
Ethics, Washington, D.C.: Georgetown University Press, 2004,
pp. 128-133. See also, Kelly, G., Medico-Moral Problems,
St. Louis, MO: The Catholic Hospital Association of the United
States and Canada, 1958.
8. "The
Hippocratic Oath," translated by Leon R. Kass, M.D., in Being
Human: Readings from the President's Council on Bioethics, 2003.
See also, Kass, L. R., "Neither for Love nor Money: Why Doctors
Must Not Kill," The Public Interest 94: 25-46, Winter 1989.