This commissioned working paper was discussed at
the Council's September
2004 meeting. The views expressed here do not represent the official
views of the Council or of the United States Government.
Eric Cohen
When a loved one suffers from dementia, it often (almost inevitably)
falls on care-giving family members or attending physicians to make
decisions about proper care. Of course, some individuals with dementia
have "advance directives" - like voices from the past, struggling
to give directions for that time (then imagined, now here) when
one's powers of self-determination have faded. But in the present,
care-giving decisions fall largely or entirely on surrogates. And
even the most detailed advance directives often require interpretation
in light of complex circumstances, and sometimes seem to conflict
with the welfare of the person now here as opposed to the
interests of the person he or she once was.
In many cases, the surrogate has been making decisions on behalf
of a family member with dementia for years - decisions about finances,
driving, living alone, or entering a nursing home. These decisions
involve not just how to care for the person with dementia, but also
how to reorder one's own life to make such care-giving possible
- whether leaving one's job, spending less time with one's children,
or taking a parent into one's home. Eventually and often more-than-once,
an acute care-giving decision arises: the person with dementia gets
pneumonia, or suffers from a cardiac arrhythmia, or needs dialysis
or tube-feeding or artificial respiration to stay alive. The life
that a demented person now has hangs in the balance; the death that
is surely coming may or may not be here. What should we do as loving
care-takers, and how should we decide? What boundaries, aims, and
factors should shape such decisions? And what should society do
to set ethical boundaries and protect personal choice, while also
confronting the reality that care for the elderly is one social
good among many?
This paper is partly occasioned by Robert Binstock's suggestion
at the last meeting that the Council take up the question of how
and when to treat supervening illnesses in persons with moderate
or severe dementia. Medical ethics has long given consideration
to the question of forgoing life-saving interventions, and even
"pro-life" moralists have held that life-sustaining treatments were
optional at best if (but only if) they were either too burdensome
or inefficacious.
But as we confront the obligations of caring for persons with
dementia or the prospect of suffering dementia ourselves, it may
be time to re-examine traditional approaches and current practices
in the care-giving realm. Many of our ethical categories and bedside
protocols were devised before vast numbers of people could be expected
to live many years without the capacity to look after themselves
or even guide their own care. In the past, most people known or
thought to be dying were likely to die very soon, regardless of
what doctors did to intervene. Today, however, people can live many
years in increasingly enfeebled and debilitated conditions, and
if they are dying, it is difficult to know how long they
might last. More and more people suffer from chronic and progressive
illnesses, including dementia, and medicine is at the same time
more able to intervene successfully to reverse supervening acute
conditions (such as infections). Given these new realities, the
ethics of forgoing life-sustaining interventions, especially when
an individual is not obviously in the last weeks or months of life,
seems to require a fresh look - even if the older ways of thinking
should turn out to be still applicable and sound.
The focus here is on the dilemmas of caring for persons
with dementia - a situation that mixes the responsibilities
of long-term care with acute medical decisions at various stages
of the disease. This is not a discussion of the ethics of euthanasia
or assisted suicide when one becomes enfeebled or demented, but
of the ethics of intervening against secondary illnesses. The paper
is about whether and when and how vigorously to treat, and why?
i
These decisions take place within certain ethical boundaries that
set outer limits to what is and is not acceptable. But within these
boundaries, they are almost always decisions requiring the discernment,
prudence, and sound judgment of loving proxies, seeking the proper
aim in the light of many relevant factors. This is a realm where
fixed rules can offer only limited guidance; it requires asking
many questions with no obvious or universally applicable answers;
it requires practical wisdom in circumstances that are emotionally
demanding and ethically complex. But it is also a realm where not
anything goes, and where some rough guidelines can perhaps ensure
that loving care-givers act in truly loving ways.
The proper aim, I argue, is always "best care" for this patient,
under these circumstances, at this time. It means a covenant between
the person with dementia and those entrusted with his or her care,
a covenant embedded within a society that must always confront its
own limits, and embedded within the larger human drama of decline,
dependence, and renewal. Not far in the background of this discussion
is the question of whether a world in which dementia is a universal
fact of family life requires fundamentally new ways of thinking
about our ethical obligations and about the ties between the generations.
Such a discussion risks the impatience of those who wish for straightforward
answers, or who wish to let everyone decide for himself while fleeing
the responsibility to guide the perplexed who must choose. The paper
will perhaps ask many more questions than it answers. But it will
also suggest that not every care-giving decision is equally good,
even if discerning the good is not often easy.
I. Framing the Question
It makes sense to begin with the decisions as they present themselves
in concrete cases: Should a person with early-stage dementia
- still aware enough to know what is happening and what is coming - decide
to forgo dialysis? And should his family intervene in favor of treatment?
Should a person with middle-stage dementia - confused, dependent,
but generally happy - undergo surgery to install a pacemaker? And
should it matter if the person with dementia is not happy but miserable?
Should a person with late-stage dementia - incapable of walking
on her own, recognizing her spouse, or controlling basic bodily
functions - be transferred to the hospital to treat pneumonia? ii
Every situation is different: the patient is a little happier
or a little healthier in one case than in another; the burdens of
care-giving are greater on one family than another; the patient's
earlier wishes are more or less clear. But judging wisely in particular
cases requires some understanding of the kind of dilemma
that care-givers face, and the nature of the choices open
to them. This is a task we undertake here in three parts.
First, what are the boundaries of acceptable care-giving?
When should seeking or forgoing treatment be ethically off-limits?
As Rebecca Dresser has written, "Just as there are legal limits
on the range of choices parents may make for their children, so
should there be limits on the range of choices competent persons
have concerning their future treatment and the choices available
to proxy decision-makers in general. In short, we as a society must
take a moral and legal stand on which categories of incompetent
patients must be treated and which may have treatment forgone."
Second, within these ethical boundaries, what should be the guiding
aims of the loving or responsible care-giver? Several aims present
themselves: doing what the patient would have wanted, if he were
competent to say; doing what is best for the patient now, as she
is now; doing what is best for the family as a whole; doing what
is best for the larger society; maintaining life by every ethical
means possible; limiting physical or psychic suffering; trying to
ensure a good death or avoid a terrible one. We must examine these
different possible aims, and puzzle through what they mean and what
claim each of them properly has on surrogate decision-makers, especially
when different human goods seem to be in tension.
Finally, what are the relevant factors in making concrete
care decisions, and what weight should each of these factors be
given? These factors include: the human meaning of dementia (as
opposed to other forms of sickness or decline that make one permanently
dependent on others); the stage of dementia; the experiential realities
of the demented person; the current welfare or suffering of the
person; the nature, burdens, and likely success of treatment; what
life will be like after treatment; the proximity of a demented person
to death; the possible effect of treatment on the trajectory of
death; the character and values of the person with dementia before
the disease; the burdens and blessings of continued care-giving
for the family; and those larger obligations that set ethical limits
on the realm of choice.
In the end, as said above, this paper suggests that care-giving
decisions involve difficult discernments within certain ultimate
limits, where the highest aim is "best care" - an idea that encompasses
both the solidarity and obligations of the care-giver to persons
with dementia, and the dignity and obligations of a demented person
even in his days of dependency and decline. This does not mean that
"precedent autonomy" - the expressed wishes of demented persons,
before the onset of disease - retains no place in shaping decisions
about care. And it does not mean that we should ignore the kind
of person our loved one was - noble, religious, intellectual, repentant -
in deciding how best to care for him now. But it does mean that
the place of precedent autonomy is finally limited by the embodied
reality now before us: the person whose life hangs in the balance
is not autonomous, but dependent. And the real-life decisions for
a demented person's care have fallen to us as loving proxies.
II. Defining the Boundaries
The first task is defining the boundaries: What decisions or approaches
to care-giving should be "off limits"? And what are the limitations
of setting fixed rules for care-givers?
(1) Clearly, from an ethical perspective, autonomy should
not be unlimited. As Leon Kass and others have argued, there is
no absolute right to die; no right to suicide; no right to control
completely the timing and circumstances of one's own death.
We do not let healthy individuals donate all their organs, even
if the individual's freely chosen death might save many others.
And we don't simply allow depressed persons to starve themselves,
even if they rationally claim that leaving this wretched life is
what they truly desire. Moreover, autonomy is not only limited as
a right, but also as a human reality. In the case of dementia, the
patient is not autonomous but dependent; he relies on others to
guide his care, even if such dependency extends no further than
having his advance directive meticulously executed. The limits to
autonomy in care decisions reflect the deeper reality that autonomy
is limited by mortality itself. Being human means being biological,
and being biological means that one's will is sometimes limited
by the realities of being an embodied self. iii
But this general truth about the limits of autonomy is more puzzling
when one considers specific care-giving cases, especially in a rights-based
society like our own. An individual with early-stage dementia may
have a legal right, while still partially competent, to forgo
certain kinds of medical treatment, even if such treatment would
extend life or improve health. He might choose to forgo the heart
surgery he needs to unblock his arteries, or reject the antibiotics
he needs if he gets pneumonia, or even stop eating in order to preempt
the looming depravations of dementia. But is he ethically right
to make such choices? Which ones, if any, and why? What are the
proper limits to his autonomy?
Forgoing heart surgery seems obviously more justifiable than forgoing
antibiotics or food: the treatment for heart disease is more burdensome
than taking pills or eating or being fed, and heart disease strikes
us unwillingly in a way that starvation in this case does not. Moreover,
it may be that getting heart surgery is the right choice for some
individuals and the wrong choice for others at similar stages of
decline. But the ethical justification for seeking or forgoing heart
surgery requires an appeal to human goods or obligations that go
beyond autonomy. It is not enough to say simply: "This is my choice."
One must argue why one's choice for or against treatment is a good
one.
The scope and limits of autonomy are even more puzzling in the
moderate and late stages of dementia, where care-giving decisions
are made entirely by surrogates. And the dilemmas are not simply
resolved or removed by the presence of an advance directive; in
some cases, the dilemmas may be even more acute. For example: If
an individual in middle-stage dementia - confused, dependent, but
seemingly happy - contracts pneumonia, should his advance directive
stipulating the rejection of all medical care be respected or over-ridden?
The law surely protects the family and doctor who respect the advance
directive, and it may even punish those who override it. But do
care-givers behave ethically by letting the person with dementia
go without treatment? Should they honor the person's prior wishes,
as expressed when he was in a position to express his own interests
and values? Or should they seek to benefit the life the person with
dementia now has by overriding the advance directive and offering
treatment?
In both of the above examples, the question is whether autonomy
- in the form of present demands or anticipatory instructions -
should be limited by other ethical goods and obligations. And in
both cases, there is strong evidence that there should be some ethical
limits to autonomy; that individual wishes should not reign supreme;
that the privilege of choice does not justify all choices. And yet,
defining the boundaries is no easy task. Aiming at death should
be off limits, and rejecting non-burdensome treatments (or food)
that extend life and improve health for the person now here seems
ethically questionable, though perhaps not absolutely off limits.
The individual or the care-giver might appeal, in such cases, to
the desire to live (or see one's dependent loved one live)
a certain kind of life in one's final days, where death is
the unavoidable consequence of such a life but not the directly
chosen goal. But the decision to forgo treatment on these grounds
requires an appeal to goods or aims that go beyond autonomy - aims
that can be examined critically in ways that a mere assertion of
personal autonomy cannot be.
(2) It is also clear, from an ethical perspective, that proxy
decision-making should not be unlimited, and that some decisions,
while legally permissible, may not be ethically justifiable. The
responsibility to make decisions for another person does not confer
the right to make any decision whatsoever. And even those who have
a special claim to know what is best for their loved one - spouse
on behalf of spouse, adult child on behalf of an aging parent -
must shape their claims in accordance with certain universal obligations,
even as they seek to shape their decisions in light of the particulars
of their own case.
But again, this general truth is more puzzling in concrete cases.
For example: Should the spouse of a demented person have the ethical
freedom to reject all treatment for his or her beloved, even when
the patient is in the early- to middle-stages of dementia and likely
far from death, and even when the treatments are relatively non-burdensome
and have a high likelihood of success? Is the desire to live without
the burdens of a demented loved one - or the claim that a demented
loved one would rather not be a burden to himself or to me - an
ethical justification for rejecting treatment? Conversely, should
loved ones be allowed to demand aggressive treatment without limits,
even if the treatment has little chance of success, or will cause
the demented person significant pain, or will compromise the small
pleasures that remain in his or her final days, or will make it
more likely that he will suffer a more protracted, painful, or degraded
decline and death? In both cases - the dangers of under-treatment
and the dangers of over-treatment - proxy decision-making should
be limited by other ethical goods and obligations. But defining
these boundaries is, once again, no easy task.
(3) The limits to both patient autonomy and proxy-decision-making
in the personal realm have corollaries in the social realm. Clearly,
a public policy that mandated all available treatments, where the
only goal is extending life as long as possible, would seem to deform
other goods and considerations - such as dying a peaceful death
or living comfortably in one's final days. Conversely, a public
policy that mandated non-treatment of all demented persons once
they lack certain capacities (e.g., speech, bowel control, mobility)
would also seem to be misguided, by foreclosing the possibility
of discerning those instances where treatment is warranted even
in spite of meeting such criteria. (For example, perhaps a grandchild
in the Peace Corps has not yet made it home to say goodbye, or perhaps
a son has not reconciled with his sick but still living father.)
In the majority of cases where patients can no longer recognize
loved ones or control their bowels, one might legitimately argue
that anything more than the most rudimentary and non-burdensome
curative treatment for disease should be rejected in favor of palliation.
It may be, for such people, that enough is enough, and that the
time for passing has come. But this does not mean that it would
be wise for the state to make it illegal to give individuals
who meet such criteria more intense treatments if particular circumstances
call for it. There is a difference between prudential rules of thumb
and the activity of prudence in concrete cases. Moreover, one recognizes
the need for societies to allocate public resources to a variety
of civic goods, and one could imagine or even applaud a society
that decided not to pay for expensive heart treatment for middle-
to late-stage dementia patients. But establishing non-coverage criteria
based on age or quality of life or stage of dementia is different
from mandating non-treatment or aggressively discouraging treatment
as an official policy.
Both public policies - mandatory treatment and mandatory non-treatment
- seem to defend a partial truth: in the former case, the good of
caring for the sick and the obligation to preserve life; in the
latter case, the need for the old to make way for the young and
for society to allocate public resources to a broad range of civic
goods. But these partial truths are deformed by making them absolute,
and by eliminating the possibility for prudent decisions in individual
cases, where sometimes doing what is generally sound is not what
is called for in doing what is best here and now.
(4) A full defense of certain ultimate limits on the range of
treatment decisions for persons with dementia would require more
explanation and argument, including a fuller case for why it is
wrong to choose death. But the following limits seem to remain,
for most people, both wise and acceptable, iv
and it is possible to give a succinct account of their justification:
(a.) No aiming to kill and no active killing, either on one's own
behalf or as a proxy for loved ones. The decision to withhold treatment
may foresee death as a possible or even probable result, but it
cannot ethically aim at death directly; it must aim at another good,
such as avoiding additional suffering or living one's final days
with maximum dignity. Moreover, the freedom to avoid a bad death
is not the same as the freedom to ensure a good death, and this
limit against aiming at death encompasses a limit on the right to
control the circumstances of death in a fully premeditated way.
(b.) No treatment in cases where the treatment itself will impose
excessive pain or suffering with limited prospects of success; the
obligation to preserve life cannot become a warrant to inflict undue
harm. (c.) No system of "capacity-based rationing" - i.e., a system
that mandates the withdrawal of treatment without exceptions, on
the grounds that individuals without certain capacities no longer
have a right to medical care. Such a system would assume that such
people are always an unjustifiable burden on others or that their
lives no longer have significant worth - both questionable and arguably
wrongful assumptions. Societies may decide not to pay for certain
treatments for people with moderate or severe dementia. But non-coverage
is not the same as mandating non-treatment or aggressively discouraging
treatment as a matter of public policy.
(5) Having posited these outer limits, there is much work left
to do. We must consider the proper scope of choice within these
ethical boundaries; and we must consider the general aims and relevant
particulars that should guide care-giving decisions on behalf of
demented persons. Clearly, there are some things that should never
be done; there are some treatment or non-treatment decisions that
would be wrong in all circumstances. But the challenge is discerning
what to do in cases where the right decision is ethically puzzling
and existentially hard.
This requires at least a brief comment on the nature of choice
itself, and the meaning of what we do when we choose one course
of care for persons with dementia rather than another. In short:
Do individuals have the right to choose because different people
have different values, and thus weigh different goods differently,
such that what is right for one person is not right for another
in the same or similar circumstance? Or do individuals bear the
burden of choice because every situation is so particular, with
so many different factors, that doing what is right always requires
a choice; it is never simply obvious? In the former case, choice
is really autonomy: the freedom to define ideals and seek to live
in accordance with them, or even the freedom to do what feels right
without justification. In the latter case, choice is really a matter
of discernment: not the freedom to do whatever one happens
to think is best, but the space to discern what is best or right,
with due acknowledgement of the difficulty of seeing what "best"
or "right" really is. These two ideas of choice are not the same:
the first respects all choices (within certain boundaries) as equally
justified, so long as they are conscientiously made; it is grounded
in the notion that different people have different values or the
idea that freedom itself is the highest good. The second notion
sees some choices as more praiseworthy than others, and sees choice
as the obligation to discern what is best in particular cases, and
the obligation to accept the weight of doing what is right and good
as essential to our well-being. Needless to say, most people do
not act with an explicit theory of choice; and perhaps most people
simultaneously see their own values as universally right - "I did
the right thing" - while remaining tolerant of those whose values
lead to very different choices. This tension between universal obligations
and tolerance for competing notions of the good is central to liberal
society, and central to seeing the care-giver's dilemma in its fullness.
III. Understanding the Aims
Now we turn to an exploration of the aims that should guide care-giving
decisions for persons with dementia. As will become clear, sometimes
the following aims hold together and sometimes they are in tension.
And for each aim broadly understood, there are many possible meanings
and thus different courses of action. Specifically, care-givers
must discern which aims have the greatest ethical claim: Is it the
best interests of the person with dementia or the best interests
of the family as a whole? Is it strict adherence to the terms of
an advance directive or care in light of a demented person's new
reality? Moreover, care-givers must discern what it means to act
wisely on a given aim: for example, what it really means to do what
is in the "best interests" of a person with dementia, even if one
is willing to bear any burden, use any resource, and make any sacrifice
to care for one's loved one. In the section that follows, we examine
different possible aims - both their wisdom and their limits, as well
as the complexities of understanding what they demand in relation
to one another.
(1) Respect for the Competent Person:
A prominent aim in our current formalized system of care-giving
for persons with dementia is the obligation to respect the wishes
of the competent person the patient once was. In theory, this idea
can have two general meanings: at the extreme, it might mean that
only competent persons command respect as persons, and that all
demented individuals are objectively less human than competent ones.
But in the main, it is the idea that all individuals should have
the freedom to decide for themselves, while they are competent,
whether life with dementia has any meaning or dignity, and what
kinds of treatment should be pursued or rejected on their behalf.
It is this second meaning that has been formalized in our system
of surrogate care-giving, most especially in the form of advance
directives.
There is a partial wisdom in this approach: It aims to honor the
distinctness of individuals and to maintain a connection between
the person one was when fully self-aware and the person one might
become (or now is) when demented. It aims to set some limits on
the types of decisions care-givers can make on behalf of persons
with dementia, and perhaps to protect against the dangers of under-treatment
or over-treatment. And it aims to offer some clear directions to
future care-givers, who might tremble at the prospect of deciding
the fate of a loved one without any guidance.
But in practice, respect for the wishes of the competent person
once present - or respect for what he would have wished, even if he
did not say so explicitly - is not by itself a sufficient guide for
loving care-givers. In many cases, the wishes of the once-competent
person are not clear: many people cannot fully envision what they
would want in a situation they have never experienced; or they cannot
speak for a self that does not yet exist; or they do not wish to
confront the prospect of dementia while still in their prime. And
oftentimes, the once-competent person had mixed and contradictory
feelings about what kind of care he would want if he became demented - worrying
about being a burden to others but wanting desperately to be loved,
believing that life without memory is worthless but that death is
worse.
It is also the case that one's interests change over time, and
change dramatically with dementia. The distinguished scientist might
believe, in his prime, that life without mental acumen will have
no meaning - but it might turn out, once demented, that he is happy
and at peace. The proud parent might believe that total dependence
on his children is too undignified to be contemplated - but then
lose such pride once dementia sets in, and happily take the care
that his children happily extend him.
More broadly, as discussed above, self-determination has intrinsic
limits in a civilized society: we cannot simply do with ourselves
as we please; we should not simply choose the manner of our own
death by a willful act. Indeed, even the competent person's wishes
must be limited, because sometimes even one's 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.
In the real world, the burdens of decision happen now,
in circumstances that past directives cannot always imagine. These
decisions fall on us - the care-giver. And we experience the loved
one with dementia as they are now - perhaps saddened by the capacities
that are gone, but also attached to the person still present, who
is more to us than just a corpse, and more to us than a set of instructions.
We cannot respect the competent person's past wishes without also
taking into account the incompetent person's present needs; and
we cannot make decisions only for the self that exists in memory,
but also for the self that exists in embodied reality.
This does not mean that the character of the individual before
the onset of dementia should be treated as irrelevant in deciding
how to care for the person he now is: to treat the past as irrelevant
would deny the continuous life trajectory of the person; it would
deny, in a different way, the reality of the embodied self. But
the challenge is not simply doing what he would have wanted, but
seeing if there is any way to help the person with dementia live
in accordance with the ideals he once self-consciously held, but
in a condition where full self-awareness is no longer possible,
and without transgressing certain ultimate boundaries. And more
broadly, it requires that we look to aims and obligations beyond
precedent autonomy in framing decisions for the incompetent person
now entrusted in our care.
(2) The Good of the Family:
In deciding how to care for a loved one with dementia, a care-giver
might aim at the good of the family as a whole, not just the wishes
or well-being of the demented person. For example, a care-giving
spouse might think in terms of a demented person's children and
grandchildren, and how continued care and continued dependence affects
their well-being. Or a care-giving child might think in terms of
the good of her own family, and whether the obligation to sustain
life must at some point give way to the flourishing of the next
generation.
One approach to aiming at the good of the family might be strictly
utilitarian, weighing the costs and benefits of sustaining a demented
person's life for everyone in the family: Does the living presence
of a parent or grandparent, in his or her current condition, 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
approach to these questions and our best ideas of the family. Central
to the nature of the family 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. Rather, we live in and through families - as parents,
children, grandparents, spouses - 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: sometimes in families, we must give more than we
seem to get. By reducing an individual family member simply to the
pleasure he or she gives other family members, we risk undermining
the very idea of the family that such a utilitarian calculus aims
to promote. We would undercut the idea of the family in the name
of the family.
But even if one affirms the bonds of fidelity and mutuality, matters
are not so simple. For example, a care-giver might ask how the person
with dementia himself might seek to benefit the family, even in
his demented state. Or a care-giver might reflect upon the proper
balance between caring for the old and nurturing the young, and
discern that a particular ailment at a particular stage of dementia,
while treatable, is also nature's way of restoring the balance,
to be accepted rather than opposed. Or one might weigh the significance
to the young of seeing firsthand what it means to care for the old,
or the significance of being reminded what a blessing health really
is, or the significance of being taught what it means to be mortal.
There is no doubt that caring for a demented person imposes real
burdens on the family, both on the middle-aged and the young. 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, or the weak left to die in
the name of flourishing.
(3) The Good of Society:
Most individuals, when making decisions about how to care for
loved ones with dementia, will not decide in terms of what is good
for society. But it is also the case that family members are not
the only actors in this drama: there are the doctors and hospitals
who make recommendations about best care; there is society as a
whole, which pays a large proportion of health-care and long-term
care costs for the elderly, and which must weigh these goods against
other civic goods; and there are the fundamental values of society,
such as nurturing the young, securing the equality of all, and protecting
the vulnerable from harm. Thus while individuals may not aim at
the good of society in making decisions, society as a whole will
establish the conditions that influence those decisions - including
the influence of law and culture on the ethical intuitions of the
individuals who bear the responsibility of care.
Moreover, just as families face hard economic decisions and trade-offs,
so does society as a whole: 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. 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 were financed by 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: Some argue that society
should enact certain objective non-treatment standards 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 argue that respect for the dignity and equality
of all persons is the central value that makes society possible,
and that the supreme good of society is to ensure that this value
is publicly affirmed rather than undermined by age-based or capacity-based
rationing of health-care. Still others believe 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 the society
as a whole.
But none of these answers, by themselves, is wholly satisfactory.
There is a partial wisdom in seeking to set social limits on treatment:
This policy confronts the reality of mortality, the passing of the
generations, and the interconnectedness of all social goods; and
it acknowledges the potential danger of squelching the young in
caring for elderly persons whose dependence becomes a long second
childhood. But such a policy also risks dehumanizing persons with
dementia - 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 even in
cases where simple medical treatment would benefit the life a demented
person still has.
There is partial wisdom in seeking a procedural solution, one
that defers care-giving decisions as much as possible to individual
families. And yet, as discussed above, a policy of autonomy without
limits gives individuals maximum freedom but offers little guidance
to patients and care-givers about how to live that 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.
The third view - that society has an obligation to respect the
full dignity of persons with dementia and should not see dementia
as a reason for unequal treatment - seems closest to the truth as
an abstract principle, but also wholly inadequate by itself as a
practical guide to policy. It still leaves us with the difficult
discernment of deciding what is truly in the best interests of patients.
And it offers little guidance about the best ways of affirming the
dignity of demented persons in a society where resources are always
limited. It says nothing about what obligations persons with dementia
may have to the society of which they are part, including the possible
obligation to "stand aside" for others who have not yet lived a
full life, rather than seek every possible remedy in their final
days or in an extended decline. Respecting the dignity of persons
with dementia does not settle the hard question of whether society
should pay, for example, for coronary by-pass surgery for someone
with moderate to severe dementia, or whether dementia (as opposed
to age and level of dependence) should be given any special weight
in making such a decision. These types of hard questions remain
for prudent care-givers and prudent citizens to decide.
(4) The Good of the Person Now Here:
At the heart of being a care-giver and surrogate decision-maker
is trying to see the world as the demented person sees it, and perhaps
occasionally seeing the worth of the person's life, even when life
with dementia may no longer seem to be a benefit to the person himself.
This is, of course, no easy task, but it is also not an impossible
one. As Rebecca Dresser has argued, we can do a much better job
than we presently do understanding the phenomenology of persons
with dementia; we can pay more attention to those experiences that
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. It also means seeing the demented person
not simply as an individual with interests for himself, but as a
life whose value transcends the self's own interests. But even as
we try to empathize with persons who suffer dementia or defend the
possibility of being demented and happy, we cannot lose sight of
the deprivations that often or eventually come with this disease:
the loss of modesty and self-control; the outbursts of anger; the
physical discomfort; the need for feeding tubes or physical restraints.
Seeing the good of life with moderate or severe dementia often means
seeing the worth of a life that had been stripped of many worthwhile
and dignified things.
Approaching care-giving decisions in this way focuses on a core
question: How do we benefit the life this person now has - even
if it is not the life a demented person would have chosen for himself?
This straightforward question does not always have a straightforward
answer. To benefit the life a loved one now has means discerning
the true good of a demented person - and more particularly, this
demented person, with this history, these attachments, in
this condition. 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, the flu, urinary tract infection
- would have a strong claim. But there are other potential claims
as well, going beyond the good of the body. Does one benefit the
life a person now has by trying to prevent an excessively painful
death or a death in triage, even if it means accepting an earlier
death? Does one benefit the life the person now has by allowing
him to live out his final days with at least some remnant of past
nobility, thus choosing (for example) non-treatment for a middle-stage
person with pneumonia, whose wits may be gone but whose self-control
over the body remains intact, and whose presence still awakens reverence
rather than horror in his grandchildren? Does one benefit the life
a person now has by choosing life even if it means a greater duration
of physical suffering, thus making the person a cross-bearing witness,
present to be loved unconditionally by his spouse?
Surely, different people will see the good of the person with
dementia in different terms and thus make different decisions; they
will value different factors differently. But all care-givers and
potential patients must be careful to avoid two potential errors:
doing what is best only for the care-giver in the false name of
what is good for the patient; and refusing in advance to be a burden
to loved ones for their sake, when in fact they would rather bear
the burdens of care than the burdens of not caring. 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.
(5) Excursus: Aiming at Death or Choosing a Life?:
Before moving to consider the particular factors that should be
weighed in concrete care-giving decisions, it might be worth pausing
to consider a puzzling case:
A noble doctor, who devotes his career to saving life and devotes
himself above all to the flourishing of his family, is diagnosed
with Alzheimer's. A proud and noble man, he knows firsthand the
ravages of this disease on families - the way it interferes with grandchildren's
little league games, the way it interferes with the marital life
of one's adult children, the way it interferes with the professional
obligations of the next generation. And he shudders at the thought
of being a burden to his children - children he knows would be capable
of providing him loving care with equanimity, but whose lives and
attention to primary duties would also be disrupted by doing so.
And he shudders at the prospect that his wealth will go to pay for
his long-term care rather than for the education of his grandchildren.
And he shudders at the prospect of standing before the young as
a broken man rather than a man of self-possession and wisdom.
A few days after being diagnosed with Alzheimer's, the man comes
down with pneumonia, and seeking to avert the years of degradation
and decline that would surely follow, seeking to live his last days
nobly, believing he has lived a good and full life - he refuses
treatment, and he dies a few weeks later.
How should we regard this man's decision? Did he aim at death,
and therefore treat his own life with less dignity than he should?
Or did he aim at living a certain kind of life - a noble life -
and simply accept death as the cost of his own nobility? Was his
decision not to treat the pneumonia really any different than taking
hemlock? Would the noble act require hiding the decision not to
seek treatment, and preserving the appearance of dying without recourse?
Does his decision, if known in full, send a message to his wife
and children that he does not believe they have the inner resources
to care for him? Or does it send a message that he loves them too
much to be a burden? Does his desire to die as a noble man in fact
make him seem small - afraid of his looming dementia and dependence?
What if the motive of the decision was self-giving - seeking to
leave his wealth to educate his grandchildren rather than spending
it all to care for himself in his final years? Would the decision
be different if it were made a few years later (in the middle-stages
of dementia) by his wife, who knew his wishes and loved him for
his nobility? Does the man possess an ethical right to reject treatment
that his wife does not have? Finally: Should we admire this man
or see his behavior as misguided?
IV. Weighing the Particulars
In the third part of our analysis, we move from the boundaries
and aims of treatment decisions to the relevant particulars
of caring for this person at this time. Prudence (or practical
wisdom) seeks to do the best thing possible in the light of the
circumstances. The previous section dealt with the aims; this one
deals with the circumstances. The circumstances do not by themselves
determine anything - rather, with his eye on the desired goal of
"best care," the care-giver seeks to discern what each concrete
case demands.
This section deliberately raises more questions than it answers.
It lists the many factors that should be taken into account in discerning
how best to care for a person with dementia, and probes how these
different realities should be weighed. In making such a list, one
does not endorse the "checklist" approach to such decisions, as
if each factor could be given a score, and as if some algorithm
could tell us what to do without doubt, anguish, or ambiguity. Matters,
alas, are not so simple.
(1) The Meaning of Dementia: Perhaps the first relevant
consideration is the meaning of age-related dementia itself, and
whether this particular condition differs from other forms of dependence
- such as the non-demented elderly person without mobility or bladder
control, or the incompetent younger person who did not lose mental
powers with age but never had them at all. There does seem to be
a human difference between the never-competent person and the once-competent
person, and this age-related transformation seems to matter humanly
speaking: He is no longer the wise father but the needy one; he
is no longer the husband who remembers every wedding anniversary
but the man who no longer recognizes the woman he married; she is
no longer the grandmother who takes the young to the zoo but the
grandmother who acts funny in the nursing home. The question, however,
is what these changes mean, if anything, for how we regard our loved
ones as patients, and whether their psychic loss
makes their dependence different in kind.
In the case of total physical dependence, the person is no doubt
also transformed, and his very physical neediness may bring about
significant psychic change. But even in a state of total dependence,
such a person might still direct his or her own care, or at least
be involved in some care-giving decisions. Moreover, the dependent
person who is not demented may still acknowledge, if in small ways,
the special attachment to the loved ones who now care for him - perhaps
with a mix of gratitude for being helped, sorrow at lost pastimes,
and shame at being so needy and so out-of-control. With dementia,
however, the situation is somewhat different. The beloved person
is still present - still the same person in body, with a continuous
life trajectory. But he is also, in a certain sense, increasingly
absent. He is both always himself and no longer himself. And while
one might say the same with all forms of decline and dependence
- the great dancer in a wheelchair is also no longer himself - mental
loss seems to be different. The great dancer in a wheelchair still
knows he was once a great dancer; whether such knowledge makes life
better or worse, easier or harder, is not a simple question.
But the question for us is whether the special changes that come
with dementia should affect decisions about medical care: Is a demented
person really closer to death because the self-conscious self is
no longer present? If not closer to death in time, is he more ready
to die, or even partially dead already? Does a person with dementia
have a lesser claim to or a lesser interest in life-sustaining treatment
by virtue of his dementia? And if so, why? v
(2) The Stage of Dementia: Early, Middle, and Late: A second,
related consideration is the stage of dementia - both in its effect
on the person's general level of dependence and its effect on the
person's mental capacities. The first part of the question turns
on the meaning of dependence itself, not the special character of
dementia: As a disease like Alzheimer's progresses, so does the
patient's level of dependence on others for the activities of everyday
life. This raises a broader question: To what extent, if any, should
care-giving decisions turn on a person's degree of neediness? For
example: Do people who are still mobile and still in control of
basic bodily functions have a greater moral claim to life-sustaining
treatment than those who lack mobility and bladder control? If so,
why?
The second consideration relates more specifically to the meaning
of different levels of mental decline: Should those who lack certain
cognitive capacities but still know themselves be treated differently
than those who no longer know themselves or their loved ones? And
should those who no longer recognize loved ones but still possess
the powers of speech be treated differently from those who can no
longer speak? In short: What is the significance, if any, of the
stage of dementia for care-giving decisions? And what account should
care-givers take of the fluctuating capacity of many demented persons?
(3) The Welfare of the Demented Person: One must consider
the general welfare of the demented person who is ill - both physical
and existential. Is the person suffering terrible pain that can
only be treated by heavy sedatives? Is the pain chronic or periodic?
Has the patient lost control of normal bodily functions - speech,
mobility, bladder control? And if so, how does the patient seem
to regard this loss of function?
Beyond physical welfare, what is the existential condition of
the patient? Does he seem peaceful or troubled? Does he seem to
get any pleasure from his interactions with others - such as visits
from loved ones - even if he does not know who they are? Does he show
even the simplest sign of basic physical pleasure in response to
a warm sponge or stroked head? Conversely, is the patient depressed,
erratic, angry, violent, or withdrawn? Does the patient's welfare
improve with certain kinds of attention or care - such as participating
in activities, being visited by an old friend, or being spoken to
regularly by a nurse rather than strapped down in a lonely room?
And if there is an illness in need of treatment, is the illness
the likely cause of the person's current distress? In the fullest
sense, what kind of life does the patient now have? And is the current
happiness of the patient really relevant to deciding how or whether
to treat life-threatening illness?
(4) The Nature and Likely Effects of Treatment:
What is the nature of any potential treatment? Will it impose
immediate burdens on the patient, and are they burdens he is equipped
to endure physically and mentally? What is the likelihood of success
and the nature of recovery? Will there be potential side effects
that will adversely affect patient welfare even if the treatment
is successful? Will the treatment threaten the goods the patient
now has? How will the treatment, if successful, potentially affect
the nature of the patient's death?
Also: Is there a difference between treatments that require surgery
and those that rely only on medication? And is there a difference
between medical care and tube-feeding? If so, why?
(5) Patient Response to Treatment: What significance should
we accord to a patient's visceral and adverse response to medical
care? Should we take this as a sign to stop treatment? Or is the
negative response simply the result of the patient not knowing what
is happening to him, and not understanding that the temporary burdens
of treatment will benefit the life he has?
(6) Is the Patient Dying?/Proximity to Death: Is the dying
process clearly underway, such that any treatment (such as chemotherapy)
might delay death but not cure the underlying illness? And how close
to death must one likely be to be called "dying"? Are all patients
with Alzheimer's already dying, or must death be more imminent for
this prognosis to have a significant effect on treatment decisions?
(7) Advance Directives: Does the patient have an advance
directive? Does it deal precisely with the current circumstances?
And are there sometimes ethical or existential grounds for overriding
it?
(8) The Unique Person - Character and Values: Did the person
with dementia make his wishes clear, before becoming demented or
in the very early stages of dementia, about how he or she would
like to be cared for later on? What weight should care-givers give
to such past wishes, especially when they seem to conflict with
the current patient's best interests? More deeply, how should the
character of the demented person throughout life or in his prime - noble,
repentant, intellectual, humble, selfish, sweet, self-sacrificing - affect
judgments about best care for him now?
(9) Family Circumstances and Loving Attachments: How has
the patient's dementia affected his closest human attachments - spouse,
children, grandchildren, friends? Is there someone here willing
and seeking to care for him? Is the family ready to say goodbye?
Is the patient's care causing excessive personal or financial burdens
on the family as a whole? Is it interfering with the flourishing
of the young?
(10) Larger Ethical Obligations and Boundaries: How does
the decision about proper care for this patient, in these circumstances,
at this time, accord with larger ethical obligations binding on
everyone - such as the obligation never to aim at death, the good
of all the generations, and the inherent value of every life?
V. Discerning the Good
The aim of this paper is not to settle the question of what to
do when a person with dementia gets seriously ill, but to articulate
a way of thinking about the care-giver's many dilemmas, as well
as the dilemmas faced by everyone who might one day suffer dementia.
The argument is that while certain ethical boundaries limit the
realm of choice, care-giving decisions are largely matters of loving
prudence, where the aim is best care for the person with dementia,
in light of myriad ethical, social, medical, familial, and existential
realities. But the fact of choice does not mean that all choices
are equally justifiable. And the care-giver's obligation is to discern
the good - and not simply live one's out preferences - in circumstances
where seeing the good is often very hard.
Yet having asked so many questions, it might seem evasive not
to offer some concrete, if provisional, answers, given here simply
as examples of how prudence within limits might operate. The following
suggestions are presented not as the opinion of the staff as a whole
or of the Council, but with a view to spurring discussion about
possible guidelines in this difficult area:
(1) One boundary seems absolutely inviolable: killing the demented
or helping the demented to kill themselves is always wrong, certainly
as a matter of public policy. Doing so would deny the obligation
of the well to care for the sick, the duty of the strong to care
for the weak, and the responsibility to choose life and let death
choose us. It would be foolish to call assisted suicide an easy
way out, since the temptation to engage in this practice arises
most often in cases where much suffering and heartache has already
been endured. There may even be selfless motives for choosing death,
such as sparing our children long years of misery as care-givers.
And there may be seemingly compassionate motives for giving a suffering
loved one a final dose of relief. But in the end, it is highly doubtful
that aiming at death is a right we truly have. And it seems more
likely that suicide or assisted suicide will burden survivors with
guilt rather than grant them a merciful reprieve.
(2) But the dilemmas of caring for persons with dementia when
they get sick are more complicated than decisions about assisted
suicide; they are decisions about care. And the long-standing categories
of the end-of-life debate may be inadequate for thinking about the
problems of extended decline and dependence, where the person with
dementia can spend years with no self-recognition of the self she
once was. Surely, this new reality requires an acceptance of being
depended upon by others for care-giving decisions and an acceptance
of depending on others for care-giving decisions. It should dispel
any illusions of being autonomous until the very end.
(3) We should have little trouble overriding an advance directive
if we believed doing so would benefit the person entrusted in our
care. (As an aside: I cannot imagine ever having an advance directive
myself, since I would hope, perhaps foolishly, that a lifetime of
being in a family has prepared my loved ones for making decisions
on my behalf - decisions I am perfectly willing to leave to them.)
(4) One can see the nobility in refusing treatment for a life-threatening
disease that strikes very early in one's dementia, when a person
is still aware of what is coming and might choose to accept death
as the cost of living a certain kind of life until the very end.
But the noble deed may ultimately miss its mark: In the name of
freeing loved ones from burdens, it might burden loved ones with
inescapable questions about their family member's lack of trust
in them. And in an effort to choose death with dignity, it might
reveal a lack of courage in the face of un-chosen decline. That
said, the ethical case for forgoing treatment for the sake of nobility
appears to strengthen as the disease progresses, and it may be that
a loving spouse has just as much authority to decide when enough
is enough as the person himself before the full onset of dementia.
(5) The happiness of the person with dementia is a legitimate
factor in deciding how aggressively to treat, and the best care
for demented persons who are violent or depressed may mean intervening
less aggressively (including accepting death) when illness strikes.
But one must also worry that certain treatments aimed at extending
the lives of demented persons who are happy - such as heart surgery
for an individual with life-threatening blockage in their coronary
arteries - might end up destroying the very happiness it aims to extend;
and that a few weeks or months of happy dementia followed by a heart
attack is better than a painful operation that leads to a longer
life of endless misery due to the trauma of the treatment itself.
Yet happiness is not a fixed attribute, and that the unhappiness
of persons with dementia may sometimes be due more to our betrayal
than their own unavoidable despair
(6) We can imagine a care-giving adult son with a special daughter - either
specially gifted or demanding special attention due to a disability - taking
his own daughter's well-being into account when deciding how aggressively
to treat his parent with moderate or severe dementia. The flourishing
of the young daughter should not be the reason for forgoing treatment,
but her well-being might rightly tip the scales in hard cases - without
the care-giver ever explicitly saying so.
(7) We might well support setting limits on the types of treatments
covered by Medicare for persons suffering severe dementia. But we
should also protect the right of families to seek such treatments
for themselves, if they believe there are sound reasons for doing
so, and if doing so does not maliciously burden the sick person
in the name of extending their life. At the same time, we recognize
that such a policy creates a new problem, giving the wealthy (who
don't need Medicare) more choices than the poor (who rely entirely
on Medicare).
(8) Finally, on the question of whether dementia matters in deciding
how to care for persons with dementia, we are uncertain. In short:
Should we regard a person who is physically dependent for the activities
of life differently if they are also mentally unaware? The presence
of the body is too real to deny the presence of the person. But
the loss of the soul, the memory, and the possibility of mutual
recognition - this is too real to deny the loss of something profound
about the demented self. Whether this loss means the person is
more ready to die or whether it means that the care-giver has a
special obligation to care (an obligation to dance both parts of
the dance), we are torn.
This list of conclusions is hardly exhaustive, and such opinions
cannot be properly considered in the abstract. If anything, however,
they suggest the difficult judgments we face in an era of mixed
blessings and new burdens, where loving one's elders and dying with
dignity may be harder than ever.
1. Of course, this
analysis does not begin in a vacuum: There is significant case
law governing what individuals, families, and doctors can and
cannot do; there are hospital policies and established protocols;
and families and doctors are making such life-and-death decisions
all the time, relying on a mix of procedural guideposts and human
intuitions to muddle through, trying to balance myriad pressures,
feelings, and values to do what is right.
2. These concrete
dilemmas point to larger questions: Is the choice for non-treatment
that leads to death a "right," properly understood? Or is there
sometimes an obligation to seek treatment, both as a patient and
for a loved one? Is the rejection of life-sustaining treatment
by nature a choice for death? Or might it be a choice for living
a certain kind of life, even to the very end? Or a choice to die
a more peaceful death? Or a choice to avoid yet more days, weeks,
months, or even years of suffering? It is these kinds of questions
that we consider more fully below, with a particular focus on
caring for demented person.
3. Of course, the
above claim about the limits of autonomy is one of the deepest
and most disputed questions in bioethics, and we cannot do justice
to the complexities here. For an argument against the right to
die and in favor of ethical limits to autonomy, see Leon Kass,
"Is There a Right to Die?," Hastings Center Report, January-February
1993.
4. The claims that
follow could no doubt be disputed. There is one state (Oregon)
that explicitly allows assisted suicide, thus allowing aiming
to kill with a compassionate or merciful intent. But such states
and such views still seem to be in the minority.
5. Treating the demented
person differently seems to require accepting one of the following
propositions: (a) that human dignity resides foremost in our sustained
mental capacities, and that a person with severe dementia is no
longer a self, but a body without a self; (b) that the person's
wishes before becoming incompetent should always be respected, and
that if the once-competent person stipulated the cessation of medical
care in the case of dementia, this particular act of self-definition
should always be respected, no matter how much a demented person
may still seem to have a life, and even a happy one; or (c) that
the experience of becoming demented is so horrible - different
in kind from being incompetent throughout life - that the loss of
one's powers justifies non-treatment. In short, to treat a demented
person differently than the dependent person who is not demented,
one must believe that dementia inflicts a special kind of suffering,
such that it would be wrong to extend it; or that a demented person
lacks dignity not simply because of his dependence on others for
everyday needs, but because of his changed mental condition; or
that it is legitimate for an individual to believe that life with
dementia lacks dignity, and thus permissible to direct his surrogates
in advance to cease all care if he becomes demented.
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