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
Conclusions and Recommendations
Chapter 5
This report has been, in a sense, three reports in one, unified
by a concern for, and a line of argument about, ethical caregiving
in our emerging mass geriatric society.
Chapter 1 provided an overview of our aging society. We looked
at the demographic trends, the effects of modern medicine on aging and
dying, and the novel opportunities and social challenges now before us
as the baby boomers age and retire. We also looked at individual aging
and the lifecycle, and explored the many factors that shape how
different people age and die. We paid particular attention to
age-related dementia, especially Alzheimer's disease, and to the
special burdens that this increasingly common form of debility imposes
on both patients and caregivers. In the end, we concluded that we may
face, in the coming years, a genuine caregiving crisis, with many more
dependent persons in need of long-term care and fewer available people
to care for them.
Chapter 2 looked more specifically at advance directives, a much
heralded remedy for dealing with difficult decisions in long-term care.
These legal instruments enable individuals to leave written
instructions about future treatment preferences should they one day
become incapacitated ("living wills") or to appoint a trusted proxy to
make such treatment decisions on their behalf ("durable power of
attorney for health care"). We examined the principles behind these two
types of advance directives and the evidence of how they are working in
practice. In the end, we concluded that appointing a proxy
decisionmaker is almost always sensible, while trying to dictate the
precise terms of one's future care is often misguided or ineffective.
Living will or no living will, there is no substitute for human
caregivers on the spot, who will regularly be called on to make
treatment decisions for those who cannot make them for themselves and
whose numerous and evolving everyday duties of caregiving simply cannot
be specified in advance.
Chapters 3 and 4 then considered how ethical caregivers should
decide and act, in giving care to persons with dementia. These
chapters examined several ethical dimensions of caregiving: the aims of
care and the moral boundaries and guidelines that should govern
caregivers (Chapter 3); and the work of principle and prudence in
reaching sound caregiving decisions in a range of ethically difficult
clinical cases (Chapter 4). The goal of caregiving, we concluded,
should always be to serve the well-being of the person now here,
always trying to benefit the life an individual still has, even
when that life has been diminished by disease, debility, or dementia.
Taken as a whole, our primary aim in issuing this report is to help
spark a national conversation about aging and caregiving, and to enrich
the nation's thinking about what it means, in practice, to age well and
care well. Our purpose is not to provide a detailed policy program or
extensive policy recommendations, but to spur and guide those who must
undertake this grave and pressing responsibility. We aim to ensure that
future policymaking will always take into account the ethical and
humanistic aspects of aging and caregiving, not merely the economic and
institutional ones. And we aim to give aid to caregivers, familial and
professional, struggling to do their best in hard, often tragic
circumstances. The challenges of aging are challenges for all of us-as
citizens, family members, and individuals looking ahead to our own
inevitable decline. We offer this report to help us serve and preserve
our humanity in our new world of longevity.
In this concluding chapter, we summarize some of our key findings and
present some modest recommendations. We offer guidance to caregivers
and their advisers regarding the care of their patients and loved
ones; we suggest ideas for legislators, judges, professional policymakers,
and ethics committees regarding advance directives and the need
for other possible policy initiatives; and we present one major
suggestion for mobilizing sustained research and serious national
attention to meeting the needs and responsibilities of caregiving
in our aging society.
I. Life, Health, and Death in Our Aging Society
A. Our Unprecedented Situation
Barring major unforeseen developments, we are entering an unprecedented phase
of our history-indeed, of human history-featuring (1) a new age
structure of society, (2) longer and more vigorous old age for millions,
(3) new modes of dwindling and dying, and (4) a likely shortage
of available caregivers.
1. The New Demography.
In the decades ahead, the age structure of the American population
will almost certainly undergo a tremendous and unprecedented shift,
continuing and accelerating a trend toward an older-and, increasingly,
also an "old-older"-population, with the oldest segments of the
population growing fastest, both in absolute numbers and percentages
of the whole. One projection gives the big picture: Between 2000
and 2050, the population of Americans age 45 to 64 is expected to
grow modestly from 61 to 85 million while the population 65 and
over is expected to grow from 34 to 79 million, with the cohort
85 and above more than quadrupling, from 4 million
to 18 million. These dramatic shifts are the result of improvements
in public health and preventive medicine and of modern medicine's
success against many causes of premature death; of the relatively
high birth rates of the baby-boom years of 1946 to 1964; and of
the relatively low birth rates that have persisted in the years
since then. This society-wide increase in personal longevity is
a remarkable human achievement, but it also creates an unprecedented
social situation, with novel challenges and uncertainties.
2. Healthy Old Age.
In many ways and for increasing numbers of people, this is a wonderful
time to grow old. More people are living longer and staying healthier.
Premature death is in decline, and so are certain kinds of chronic
disability for the population over 65. More people are able to enjoy
a true period of retirement, with the resources and leisure to pursue
their avocations. Unfortunately, many people still struggle economically,
physically, and personally in old age, and many people still have
their lives tragically cut short. But compared to even the relatively
recent past, when growing old was rare, when healthy old age was
rarer, and when poverty in old age was the rule, the current situation
is an astonishing achievement. We are already, as it were, staying
younger longer, and we can look forward in the years ahead to still
more advances and improvements in healthy and vigorous aging.
3. Debility and Dementia, Death and Dying.
Living longer has also changed the patterns of illness during
old age, especially the illnesses that lead toward death. Although
most of us seem likely to enjoy a greater period of healthy old
age, many of us are also destined to experience a longer period
of chronic illness and dependency before we finally die. Already,
only a minority of us dies suddenly, without prior chronic illness.
Already, the most common trajectory toward death is the path of
"dwindling," of progressive debility, enfeeblement, and dementia,
often lasting up to a decade. Special challenges arise for patients
suffering from the various age-related dementias, especially Alzheimer's
disease, a condition whose prevalence is now high (an estimated
4.5 million sufferers in the United States) and increasing. This
progressive, degenerative, and fatal disease, lasting typically
between five and ten years, begins with weakening memory and everyday
forgetfulness, moves to progressive loss of basic life skills, speech,
and self-awareness, and concludes with severe bodily breakdown,
in total dependence on others for all activities of daily life.
An unprecedented number of people will need long-term care, not
just for months but for years. Through much of that time, they will
not be able to participate in caregiving decisions, and caregivers
will often face critical decisions about choosing or forgoing life-sustaining
or death-postponing treatments, in addition to the daily efforts
of providing ongoing care.
4. The Availability of Caregivers.
While the need for long-term caregivers and proxy decisionmakers
appears to be increasing, the supply of readily available caregivers
appears to be shrinking. Because families are smaller, there are fewer
adult children to care for their aged parents. Many more old people are
childless and alone. Increased family instability and greater
geographic mobility mean that, in many cases, fewer caregivers are
willing or available to care. Once the typical caregiver was a woman
who did not work outside the home; today the typical caregiver, still a
woman, is employed outside the home, and often obliged in addition to
care for her own young children. At the same time, there are already
shortages of professional caregivers-nurses and geriatricians-and
caregiving jobs such as nurse's aides often lack the levels of
compensation and benefits that might attract sufficient numbers of
workers. The cost of care is rising, the ratio of workers to retired
persons is falling, and many other social goods compete for scarce
resources. Looking ahead, we may face a situation with more people
needing extended long-term care, with more prolonged periods of
debility en route to death, but with fewer qualified people willing and
able to act as caregivers. This is an issue demanding urgent social
attention.
B. Our Uncertain Future
Although we know much about the aging of American society, there is
much we do not know, especially about possible future developments,
medical and social. We have good reason, therefore, to be both alert
and cautious. Economic growth or economic setbacks may increase or
decrease the resources available to families and state governments for
providing care in old age. New instruments such as long-term care
insurance may expand the caregiving options available to families.
Changed work patterns or levels of compensation may alter the
availability of both voluntary and professional caregivers. Policy
changes or new programs might reduce the costs of care or lead to
better and more suitable kinds of care. Free societies are creative
societies, and in the years ahead we should expect to see several
now-unexpected ways of addressing the challenges of caring for the
disabled elderly.
In addition, major biomedical advances-say in the prevention, delay, or
amelioration of Alzheimer's disease-could modify these current
projections, by altering average life expectancies, changing the
prevailing patterns of health and illness, and transforming the most
common trajectories toward death. (Conversely, major breakthroughs in
the treatment of cancer or heart disease could increase the proportion
of people whose death comes only after a decade of dwindling.) New
technologies to facilitate basic care and improved practice standards
within medicine and nursing could also make caregiving more effective
and easier.
Yet even in the best-case scenarios-with healthy aging until the
end, family caregivers ready and willing to care, and public policy
that supports caregivers and care-receivers-we still face definite
challenges ahead. These include, for example, the costs of financing
long-term care or expensive medications for the elderly, or decreases
in economic productivity should more workers in their prime devote
more energy to the "non-productive" activities of caring. And it
is by no means assured that we will get the best case scenario rather
than something much less ideal: increased incidence and prolonged
periods of dementia and enfeeblement, fewer family caregivers ready
and willing to care, and a public policy that regards growing expenditures
on the elderly as unwarranted or unaffordable. Under such circumstances,
it may prove more rather than less difficult to do right by our
parents and spouses in their long, last act of life. Yes, the future
is unknowable and uncertain, but we know the stakes and they are
surely high.
C. Ethical Commitments and Wise Public Policy
As we chart our uncertain course into an equally uncertain future, not
everything is or should be up for grabs. Certain moral aspirations and
moral boundaries-always to care, never to abandon or betray those
entrusted to our care-should guide us in the days ahead. But these
moral aspirations always take shape in real-life circumstances, where
resources are limited, people are tested, and competing human goods
call out for our attention and devotion. We cannot do without awareness
of the likely perils. We cannot do without ethical guidance.
Looking ahead, American society needs to avoid two grave dangers: We
need to prevent the worst kinds of betrayal and inhumanity toward the
dependent elderly-such as relying on institutions that "warehouse"
elderly persons, promoting assisted suicide as an answer to disability,
and embracing euthanasia as a solution to the perceived social and
economic burden of dependent persons. At the same time, as we aim at
the best care possible for the elderly, we must avert the danger of
intergenerational conflict over scarce resources, meeting our
obligations also to our children and grandchildren, sustaining other
social goods, and avoiding a major new drag on the economy that would
(among other things) weaken the economic capacity of working families
to provide care for their loved ones. Put positively, we need to
encourage families and local communities to become responsible
caregivers and to sustain one another in giving care, while
recognizing the role of the state in providing a safety net of decent
care for those who lack adequate economic resources or a network of
family support.
Many Americans continue to believe that people should be self-reliant
and care for themselves and their families without state intervention
or support. But the looming crisis in long-term care may challenge
these beliefs, unless government provides additional assistance
to support caregiving families. We are rapidly moving into a situation
in which-due to the genetic lottery and the vagaries of disease,
and through no fault of their own-nearly half of society's families
will face a demand for long-term care that they simply will not
be able to meet without expensive professional help, while the other
half will not. In a society of ethical caregiving, the government
must accept a duty to find, encourage, and institute measures that
would help share the economic part of this burden more equally.
II. Conclusions and Recommendations
We come, then, to a summary of our conclusions and recommendations,
some concerning individual caregiving, some concerning procedures
and policies regarding advance directives and advance care planning,
and a final recommendation to promote further national attention
to the subject of aging, dementia, and caregiving.
A. Individual Caregiving
Human beings who are dwindling, enfeebled, or disabled in body or in
mind remain equal members of the human community. As such, we are
obligated to treat them with respect and to seek their well-being, here
and now. We should always seek to benefit the life incapacitated
persons still have, and never treat even the most diminished
individuals as unworthy of our company and care. Their well-being in
the present is of course related to the ideals and wishes of their
earlier life, but those past wishes and ideals do not alone determine
what we owe them today. We should seek their present good, avoid
doing them present and future harm, and make every effort-in the light
of their own special circumstances and ours-to find the wisest and best
form of care possible.
Caregiving always takes shape in the particular-involving distinctive
individual patients and caregivers, in unique and often complicated
circumstances-and there can be no single principle or invariable
formula for discerning the best care possible in each and every
case. In decisions large and small, loving prudence is required
to discern the most beneficial course of action. But, as we argued
in Chapter 3, there are certain moral guidelines and boundaries
that should guide all caregivers, as they strive to do their best
for the person now relying upon them. We highlight three crucial
teachings.
1. Euthanasia and assisted suicide are antithetical
to ethical caregiving for people with disability. These practices
should always be opposed.
If we are to care well for the needs and interests of persons incapable
of caring for themselves, we must erect and defend certain moral
boundaries that prevent us from violating the people entrusted to our
care: No euthanasia, no assisted suicide. These practices should be
opposed for many reasons, and not only because of our moral (and legal)
opposition to seeking the death and taking the life of innocent human
beings. These taboos are also indispensable for giving good care: one
cannot think wholeheartedly about how best to care for the life the
patient now has if ending his or her life becomes, for us, always an
eligible treatment option. This holds true not only in the vexing
end-of-life cases discussed in Chapter 4. It is also indispensable for
fulfilling our everyday obligations and performing our everyday
ministrations in their care. It is indispensable to serving faithfully
and loyally, deserving of the trust that has been reposed in us,
whether as family members or as doctors, nurses, and hospice workers. A
decent society will not seriously consider abandoning and betraying its
most vulnerable and disabled members. A prudent society will not weaken
those necessary restraints that prevent even the most devoted
caregivers from yielding-out of weakness or frustration-to the
temptation to abandon or betray those in need of their care.
Try as we may to be devoted caregivers, we are not saints, and-under
the pressure of trying circumstances-even our best motives may lead
us to betray or abandon altogether those who in their vulnerability
depend on our care. Hence, we all need a shared moral world in which
certain actions that undermine the solidarity of the human community
are firmly beyond the pale. Or, to put the matter positively, it
is only as we deny ourselves the option of "solving" intransigent
social problems by ridding ourselves of those who manifest the problem,
that we can train ourselves to cultivate with greater clarity and
wisdom the capacities we have and the virtues we need for caregiving.
A society that sets its face against abandoning those whose lives
are in decline has a better chance of being a society that thinks
creatively about the trajectory of life and the bonds between the
generations, of remaining a society in which to live long is also
to live well together.
2. The goal of ethical caregiving in the clinical
setting is not to extend the length or postpone the end of the patient's
life as long as is medically possible, but always to benefit the
life the patient still has.
In caring for those who cannot care for themselves, our primary goal is
to do everything we reasonably can to benefit their lives-from
meeting basic needs and sustaining life, to easing pain and curing
ailments, to offering comfort in difficult times and, in the end,
keeping company in the face of looming death. Medical interventions
that sustain life are, of course, often a benefit to those whose lives
they sustain. But extending life and delaying death are not the only or
primary goals that should guide caregivers, and there are times in
which pursuing those goals would require imposing new and unjustified
burdens on the patient. Caring well for the patient does not require
always choosing interventions that would prolong his life or
delay his dying, and sometimes best care requires forgoing treatments
that may sustain life at the cost of imposing undue misery or offering
palliative care that accepts an increased risk of an earlier death.
Some interventions, even if life-sustaining, do not benefit the life
the patient now has. Some interventions, aimed at benefiting the
patient's present life, may not be life-extending.
Moreover, in caring for the life the patient now has, we care
also for the manner and humanity of his dying. Feeding tubes and
respirators are not always obligatory. Neither is hospitalization
or the intensive care unit. And if these measures are used for a
time, there are circumstances when it is morally permissible-and
even, perhaps, morally required-to desist. Dying as well as possible-or,
more modestly, in as little misery as possible-is also one of our
concerns and cares. Even as we must never seek or aim at the patient's
death, so we are also under a positive obligation not to impose
treatments that would unduly burden the patient, make his dying
more difficult, or otherwise deprive him of a more peaceful end
of life or of final hours in the company of those who love him.
Dying, like living, is a human matter, not merely a medical or technological
one.
3. The clearest ethical grounds for forgoing
life-sustaining treatments are an obligation to avoid inflicting
treatments that are unduly burdensome to the patient being treated
and an obligation to avoid treatments that are not at all (or not
any longer) efficacious in attaining their desired result.
As caregivers, with necessarily limited powers to fix what is broken,
we must distinguish between the burdens of disease (which we cannot
always control) and the burdens of treatment (for which we are fully
responsible). There are some burdens and some forms of suffering
that we cannot make disappear, despite our best efforts. Because
our powers of cure are limited, sometimes all we can do is stand
with the patient in her days of trial, always seeking to minimize
those burdens we cannot fully eradicate. But where we do intervene
with medical treatments or dislocations required to obtain them,
we are under an obligation not to add unduly to the patient's existing
miseries and troubles. And, of course, we are also under an obligation
not to intervene uselessly. Those interventions that cause undue
burden or fail to benefit the life the patient still has can be,
and often clearly should be, forgone. Judging when this is the case
is always the task of prudent caregivers, making conscientious decisions
in particular circumstances for particular patients.
B. Procedures and Policies: Ethics Committees, Professional
Societies, Judges, and Legislators
The ability to care well for people who can no longer care for
themselves depends on many factors-economic, medical, social, cultural,
institutional, civic, legal, and ethical-many of which are also
influenced directly or indirectly by policy decisions. Most of these
matters lie beyond the scope of this report, which is devoted mainly
to the ideas and practices of ethical caregiving. In the realm of
public policy, we have confined our attention to examining critically
the legal instrumentality of written or formal advance directives.
We here summarize our key findings and offer some forward-looking
recommendations to ethics committees, professional societies, judges,
and legislators involved in developing or interpreting policies
and procedures relevant to advance directives. In the end, we recommend
also the search for alternatives that focus more directly on creating
an economic, civic, and institutional environment in which best
care for the patient now here is the moral and medical aim and in
which the chances of providing such care can be significantly increased.
1. Advance instruction directives (or living
wills), though valuable to some degree and in some circumstances,
are a limited and flawed instrument for addressing most of the decisions
caregivers must make for those entrusted to their care.
Living wills, although much talked about and recommended by many
people, are not a panacea. They address, at most, but a small fraction
of the decisions caregivers must make for incapacitated persons. Even
if everyone executed a living will, and even if the instructions were
followed as written, the big questions of long-term care and ethical
decision-making would not disappear or become readily manageable: there
are too many situations in which following orders is not the best way
to give care, and giving care always requires more in terms of
resources, character, support, and judgment than any legal instrument
can possibly provide. We firmly believe that the American people-both
potential patients and potential caregivers-should not be misled or
encouraged to think otherwise. Moreover, in addition to the practical
difficulties with living wills that we exposed in Chapter 2, the duties
of actual-as opposed to imagined-human caregiving always arise within
concrete situations experienced in the present, not conjured situations
imagined in the past. Precisely because the obligation of caregivers
here and now is always to the patient before them here and now,
instructions written long in advance can rarely be simply authoritative
or dispositive.
To be sure, a few of the difficulties with living wills could be ameliorated
by improved and more prudent drafting: for example, every writer
of a living will should be asked to consider writing into such a
document-after, of course, discussing it with the relevant parties-a
provision acknowledging that the wishes expressed in the document
are based on incomplete information and explicitly authorizing family
members and clinicians to override the specific instructions if
they judged it would serve the patient's present welfare to do so.
Also, rather than write blanket exclusions of specific kinds of
potential treatment interventions, advance instructions might explicitly
allow for temporary trials of certain treatments, permitting
the patient's caregivers to see if the treatments might actually
be beneficial without creating a situation in which the treatment
cannot be easily stopped. But even such improvements do not address
the fundamental limitations and shortcomings of advance instruction
directives, which can never replace prudent judgment by devoted
caregivers about what a patient now needs. Ethics committees, drafters
of professional guidelines, policymakers, and legislators at both
the state and federal levels should address these failings and search
for more practical and responsible alternatives.
2. Advance proxy directives are much more valuable
and should be encouraged.
Instead of attempting to specify what should be done, advance
proxy directives specify who should make crucial decisions
on our behalf. These instruments ratify our fitting desire to be
placed in the hands of loving caregivers whom we trust with our
well-being when we can no longer act to promote it ourselves. Naming
of proxy decisionmakers provides clear identification of who shoulders
responsibility to act for the patient and makes it clear to physicians
and others with whom they must deal. Such knowledge makes it much
more likely that there will be the desirable discussions between
family and professional caregivers at all important junctures of
treatment and care.
3. Beyond legal instruments drafted and devised
by individuals, we need to develop policies and procedures that
encourage ongoing discussion and coordination among all relevant
parties-including family members, health care professionals, social
service providers, and, where possible, the patients themselves.
More important than the execution of such legal instruments is
a process of advance care planning and full discussion, covering
not only "end-of-life" decisionmaking but the whole range of caregiving
realities-including questions about assisted-living, home care,
medical preferences, finances, scheduling of available caregivers
and respite care, and possible eventual transfer to a skilled nursing
facility. Such planning in the early stages of illness can often
include the patient, who can make known his greatest hopes and fears
and who can gain much needed reassurance that he will have loyal
care and company throughout his illness. Such planning should not
be regarded as a rigid set of prescriptions for future care, since
flexibility is always necessary. But wise planning in advance can
sometimes improve the circumstances in which caregivers eventually
make evolving and often unpredictable decisions, by thinking ahead
about the range of caregiving options that may one day become relevant
or necessary.
4. Ethics committees called upon to give advice
to doctors and families, and judges obliged to adjudicate difficult
and often tension-filled cases involving decisions about life-sustaining
treatment, should do everything possible to ensure that surrogate
decision-making focuses as much as possible on the best care for
the incapacitated patient in his or her current condition.
Hospital-based ethics committees are frequently called on for advice
regarding ethically difficult treatment decisions, often about the use
of life-sustaining treatment. Professional societies often formulate
practice guidelines for physicians treating incapacitated patients.
Guideline drafters and ethics committees should always focus on the
present welfare of patients. They should be concerned less with trying
to figure out what the incapacitated patient would want done, were he
now to be consulted in his own case, and concerned more with discerning
what the incapacitated patient now needs in order to serve best the
ongoing, if dwindling, life he now has. Judges who must hear cases in
which there is an unresolved dispute about best treatment would also do
well to make sure that the course of action recommended does not
overvalue "precedent autonomy" or past wishes and pays proper regard to
what best care owes this human being in his current situation.
Moving from individual cases to general policy in this area, state
legislators should be cautious about putting more state authority
and resources behind advance instruction directives. They should
focus instead on standards governing decisions for patients who
lack such directives. State law should be responsive to the reality
that decisions at the bedside are almost always guided by proxies
seeking to do what they believe the patient would have wanted or
what they believe now best serves the patient's welfare. Lawmakers
should give proxies, families, and other informal surrogates the
necessary authority and discretion to resolve treatment dilemmas,
while always encouraging those proxies and surrogates to seek the
best care possible for the patient now here and always treating
best care as the primary aim in disputed cases. Congress should
revisit the Patient Self-Determination Act of 1990 and consider
amendments and revisions that recognize the authority of informal
surrogates to decide on behalf of incapacitated patients and that
promote the "best care possible for the present patient" as the
basic standard for clinical decision-making. This federal statute,
which requires health care providers to notify patients about advance
directives, was intended to increase patient involvement in treatment
decisions, chiefly by providing patients with the opportunity to
express their wishes ahead of incapacitation. Experience has shown,
however, that these well-meant measures have not had much practical
impact and have been ineffective in promoting better care for incapacitated
patients.
5. Good long-term care requires willing and
able caregivers, community supports, caregiving institutions, and
social policies that go beyond advance directives and beyond even
responsible advance care planning. Public policy must address these
issues directly.
Improved legal instruments for decision-making, and more capacious
and comprehensive forms of advance care planning, will not by
themselves enable even the most devoted family members to do
their work well. The ability of family caregivers to give proper
care to persons with dementia depends greatly on the economic, social,
and communal resources available to them and to their professional
caregivers: for example, public and private health insurance that
fits their special needs; affordable long-term care insurance; personnel
and funds for respite-care; appropriate institutional housing and
care-giving facilities; home care services; technologies devised
to assist in giving basic bodily care; faith-based or civic support
groups for patients and families; the availability of health care
providers who can give continuity of care and comprehensive oversight
of medical attentions; and, of course, vigorous support for biomedical
research into the prevention and treatment of the various forms
of dementia. Not having explored any of these issues in any detail,
the Council is not now in a position to make legislative or policy
recommendations in these areas, either about what should be tried
or about how it should be paid for. However, our recognition of
the importance of tackling these matters is one of the reasons for
our next and final recommendation.
C. Presidential Commission on Aging, Dementia,
and Long-Term Care
This report on ethical caregiving began by calling attention to the
challenges our society may soon face as the population of elderly
persons in need of long-term care grows. With the impending retirement
of the baby boom generation, we see an urgent need to begin planning
for the likely strain on families and institutions that may very well
result from the unprecedented combination of greater longevity,
increased incidence of dementia, the decreasing ratio of active workers
to retired persons, the increasing cost of care, and the looming
shortage of paid and unpaid caregivers.
We hope that our report has performed an important public service by
heightening the visibility of the problems that can be expected to
arise, by drawing attention to their often-neglected ethical
dimensions, by pointing out the limited value of advance directives,
and by suggesting some guidelines for what should be considered good
care in a decent society.
And yet peering into this, our future, leaves us more humbled than
certain of what course to take. We have offered key and, we think,
quite critical advice in those areas for which our Council is best
suited to give guidance. But our work has also opened up before us a
series of questions touching upon areas that must be taken up by and in
conjunction with others-by experts in demography and economics, and
above all by policymakers. Intensive study and planning are required if
the nation is to avoid a destructive conflict between generations and
the neglect or abandonment of the frail elderly. We also recognize that
the ethical analysis we have provided is of limited value in the
absence of adequate caregiving institutions and familial caregivers
with the requisite character and resources. Therefore, we are
recommending as a next step the establishment of a Presidential
Commission on Aging, Dementia, and Long-Term Care.
To meet the challenges of our aging society, we need first to face up
to their existence. Although most American families are already all too
familiar with this subject in poignant personal ways, we as a nation
have not yet addressed this topic squarely in our public discourse. It
is time for public acknowledgement, at the national level, of the
seriousness of the challenge. More important than raising
consciousness, it is time for careful research, sustained inquiry,
creative innovations, and responsible collective action. A
Presidential Commission on Aging, Dementia, and Long-Term Care could
launch such an effort by undertaking a careful and comprehensive study
of this entire subject-in all its aspects-and by offering feasible and
sensible recommendations for innovation and reform.
The first mission of such a body would be to collect reliable
data and to commission empirical research (1) to understand
and assess the demographic, economic, and policy realities of the
present, (2) to make reasonable projections about the challenges of the
future, (3) to review and evaluate the economic and human resources
available to meet them, paying attention to the hard questions about
priorities, and (4) to identify and assess as models the best practices
that are currently in use or in development in various communities
around the country. The body should pay special attention to the social
challenges of providing long-term care for persons with dementia and
debility, once the baby boomers enter old age.
The second mission would be to develop and recommend feasible policy
reforms, whose primary aim would be to improve the capacity of families
to care for their loved ones, rewarding and supporting their efforts by
promoting institutions and practices-such as long-term care insurance,
community-based respite care programs, and a flexible menu of long-term
care options-that can assist caregivers in their task. It should pay
special attention to the needs for continuity of care and the
importance of fostering cooperation among families, professional
caregivers and caregiving institutions, and faith-based communities. At
the same time, the commission should look for ways to improve the
existing safety net for those who lack adequate resources to care for
themselves.
The challenges ahead are ethical, social, economic, and medical.
Accordingly, the Commission's members should include persons
knowledgeable in these fields. Where it lacks the expertise, it should
take testimony and seek advice from people with knowledge and
experience in all the relevant areas, including, among them, the
following: the demography of American society; the changing prevalence
of chronic disease and trajectories toward death; biomedical research
into the diseases and disabilities of old age (especially Alzheimer's
disease and the other senile dementias); the design and management of
long-term care institutions; best practice standards for clinical care
for the frail elderly, especially those with dementia; nursing and
para-professional recruitment and training; the changing structure of
modern family life, with special attention to effects on available and
likely caregivers; ethical caregiving at the end of life, including the
experience of hospice care; the economics of old age; the wealth of
baby boomers as they reach retirement; options and costs of private
long-term care insurance; the effects of tax policy on incentives to
save for old age; the rules governing Medicare reimbursements and
Medicaid eligibility; the role of faith-based institutions in
caregiving at the end of life; community based respite-care programs
for caregivers; and local, ethnic, and religious differences in
expectations and practices regarding eldercare.
We are well aware that Presidential commissions, like advance
directives, are not a panacea. They have their occupational hazards and
their temptation to grandiosity and radical "solutions." The commission
proposed here should therefore proceed boldly but modestly, mindful
especially of the fact that old age and dying are finally not
problems to be solved, but human experiences that must be faced.
The commission should also always bear in mind that the demands of
long-term care exist alongside many other civic goods, and that what is
practically possible and publicly responsible will fall short of some
imaginable ideal that could be pursued if resources were unlimited or
if our society faced no other serious challenges. Indeed, the
commission's charge should require it to assess the potential
unintended long-term costs of providing public long-term-care benefits,
to make sure that any public benefits go to the truly needy, and to see
that nothing is done to undermine familial and intergenerational
responsibility and self-sufficiency. Our goal is to strengthen
caregiving by loved ones, not to replace them.
We also recommend that the commission avoid any temptation to propose a
complete reworking of the entire American health care system or
wholesale reform of Medicare and Medicaid. Rather, in developing its
recommendations, it should target those focused but crucial reforms
that could have a large, cumulative effect in reshaping existing policy
and behavior. The targeted reform, which seems small today, is often
the best reform-both because it is the only practical reform possible
in a society resistant to radical transformation and because
responsible small steps taken early can lead us on a path toward
permanent and sustainable improvements.
The challenges of caregiving in our aging society deserve and demand
the attention of our nation's leaders at the highest levels. They will
soon confront every American family, and we would be most wise to give
them careful and most serious thought before they are fully upon us.
* * *
Aging, dementia, and dying, we are well aware, are not the cheeriest of
topics. We recognize that it would be much more pleasant to look the
other way and perhaps much easier to treat the topic in purely economic
terms. But denial is not an option, and much more than money is at
stake. Millions of American families already know the score and are
struggling, often magnificently, to do the right thing for their loved
ones, all on their own. It remains for the nation to acknowledge the
need and rise to meet it. A mature and caring nation, concerned about
staying human in a technological age, will not shy away from its
responsibilities. If asked, "Who cares?" the answer must be, "We do."