TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY
Table of Contents
The President's Council on Bioethics
Appendix: Personal Statements
The preceding text constitutes the official body of this report;
it stands as the work of the entire Council. In the interest of
contributing further to public discussion of the issues, and of
enabling individual members of the Council to speak in their own
voice on one or another aspect of this report, we offer in this
Appendix personal statements from those members who have elected
to submit them:
Statement of Rebecca S. Dresser, J.D.,
Statement of Alfonso Gómez-Lobo, Dr. phil.
Statement of Janet D. Rowley, M.D., D.Sc.
Personal Statement of Professor Dresser
Bioethics often focuses on the speculative, the symbolic, the
exotic developments that have little direct impact on people's lives.
Taking Care departs from this model. Many, many families
face the formidable task of deciding about medical treatment for
older relatives unable to make their own decisions. And many not
now in that situation worry that it will happen at some future point.
Besides being a personal and family problem, this is a big and expanding
social problem. There is a large and soon to be larger population
of people affected by dementia and we are far from ready to cope.
In this report, the Council adds its voice to those calling for
more systematic and sustained attention to the caregiving demands
presented by an aging society. Taking Care offers ethical
analysis and guidance, as well as a few rules to govern caregiving
decisions. It represents our effort to move the conversation, to
promote a richer and more robust examination of the distinct issues
characterizing medical care for dementia patients.
Navigating a proper course between extending life and accepting
death is never easy, but discerning that course is particularly
difficult in the context of dementia care. People with dementia
are vulnerable to the other health problems that accompany aging.
At the same time, they can live for many years after they lose the
ability to make their own choices. And they remain conscious and
able to experience burdens and benefits from treatment interventions.
These facts join to present special challenges to those who must
decide on the patients' behalf.
The standard legal and ethical approaches to treatment decision-making
for incapacitated patients supply insufficient guidance to loved
ones and clinicians responsible for dementia patient care. In the
dementia setting, advance instructions are of limited use. Indeed,
dementia care is not a problem that we as individuals can manage
on our own. If we are among the many people affected by dementia
in the coming decades, others will inevitably determine how we live
Best care for dementia patients includes ascertaining how they
could experience a proposed medical intervention. Assessing an intervention's
burdens and benefits demands attention to detail. Families and clinicians
responsible for caregiving must look closely at the patient and
possible treatment options. For confused and frail dementia patients,
interventions often create new distress and discomfort, and this
must be part of the benefit-burden analysis.
The case studies in Taking Care offer in-depth examination
of specific treatment questions. Although individual Council members
(and readers) will favor different resolutions in particular cases,
what is most important is the careful and precise inquiry into the
nature of appropriate care for dementia patients. The case analyses
identify central features of good care and examine a range of permissible
choices for those at the bedside.
Dementia caregiving is not a happy topic for biomedicine and bioethics.
It does not offer opportunities for optimistic speculation about
a future in which human mortality and suffering are absent. For
this reason, many would prefer to ignore it and concentrate instead
on the hypothetical benefits of various forms of cutting-edge research.
This seems to me irresponsible and indefensible. Attention to everyday
clinical problems should be part of the bioethics agenda. Delivering
good care to patients suffering today should be the primary goal
of medicine and health policy. For too many dementia and other patients
in this country, we fall short of this goal.
With this report, the Council draws attention to today's unmet
needs and to the larger problems that await us. We must respect
and protect dementia patients, but we must also recognize medicine's
limits, our status as mortal creatures, and our obligations to the
other people in our lives. Giving due regard to all of these concerns
will be hard to do, and without a concerted effort, we are certain
Rebecca S. Dresser
Personal Statement of Professor Gómez-Lobo
The report affirms two important philosophical principles that
should govern our care of aging patients. The first one states that
it is wrong intentionally to cause the death of a demented patient
(or of any patient, for that matter). The force of this principle
rests upon several considerations deeply rooted in our common morality.
Life is the grounding good, the good that sustains all other human
goods. Since the function of morality is the protection of the human
goods, it is natural to uphold the universal principle that enjoins
us to respect every human life, no matter how diminished it may
appear to be. A demented person is a severely handicapped individual
who does not thereby cease to be a person. To think otherwise is
to embrace a radical form of dualism that leads to the positing
of two deaths: one for the mind and one for the body. But this does
not match our unified experience of ourselves and of others. A demented
person is a human being with an organ failure just as a blind person
is a human being whose eyes have failed. Basic forms of communal
care and respect are due in both cases.
The second principle states that in certain circumstances it is
morally permissible to let a patient die of natural causes if a
treatment has become futile or excessively burdensome. This interpretation
of the traditional ordinary-extraordinary means distinction also
rests on considerations derived from our common morality. Life is
the grounding good, but it is not the sole good, nor the highest
good. Moreover, it is a fragile good and attachment to it in certain
circumstances becomes irrational. We have to learn to let go, especially
at a time when the imperative of relentless use of the available
technology becomes the default position. Because of it, withholding
or withdrawing treatment often requires an act of exceptional courage.
In considering the burdens to be relieved by the decision to withhold
or withdraw treatment we should not restrict ourselves to the patient,
but should also take into account how the family, the immediate
caregivers, and the surrounding community are affected. Their goods
matter too. This traditional view is also rooted in the philosophical
conviction that morality is not primarily an individualistic but
rather a communal enterprise.
Personal Statement of Dr. Rowley
For me, this report on the care of the demented aging is a scary
document for a number of reasons. First, it is vehemently opposed
to assisted suicide, saying it is behavior beyond moral bounds,
although it is legally permitted in Oregon (never mentioned) and
a bill for "Compassionate Choice" is currently being considered
by the California legislature. This report takes a very draconian
view of dying. The more painful it is made to be by applying rigid
ethical rules, the more ennobling it is for both the patient and
the caregiver. In the last case history in Chapter 4, the report
explicitly says that very clear advanced directives written by an
intelligent, mentally competent individual can be overridden by
his daughter when he is no longer competent because he is happy
in his demented state and his daughter wants to take care of him.
So much for the moral or legal force of an individual's advanced
directives! The report emphasizes repeatedly that the caregiver's
primary responsibility is to the patient "here and now", and the
advanced directives can and should be ignored depending on the situation
at the time. The clear message from this report is, if you feel
strongly about not living in a decerebrate state, you better kill
yourself while you have control over your fate! Compassion (the
term is used only 5 times, in Chapter 3 and never in Chapter 4)
as a human virtue to be cultivated gets short shrift as well! "Compassion"
may lead to acts that are ethically evil, so says the report, and
under no circumstance should that suspect "virtue" be allowed to
becloud the ethical issues. The irony between the Report's view
of "compassion" and the bill before the California legislature,
"Compassionate Choices," could not be more evident.
So what do those of us who are aging owe our families and friends
and our society? As has been pointed out by Garrett Hardin in "The
Tragedy of the Commons", in Science some years ago, greedy
individuals often take more than their share from the common pool,
in his case the common grazing land in England used collectively
by many livestock farmers, thus destroying it for everyone. Unfortunately,
the American political scene is rife with greedy groups, corporations
and farmers, and now the AARP! This report from the President's
Council on Bioethics comes with no price tag and I'm not competent
to guess at how many billions of dollars it might cost to implement.
Where will that money come from? Might it not come from programs
that help needy infants receive better health care and early childhood
education so that some of the disadvantages associated with being
born in poverty might be ameliorated by an enriched early childhood?
If you asked them bluntly, would grandparents really want to steal
from their grandchildren? It is an interesting question. Maybe
we do not wish to know the answer?
1. What is the responsibility of the patient to his/her family,
friends, and society?
a) Virtually everyone regardless of age should have a will.
Certainly when individuals apply for Medicare, the application
process should be modified so that individuals are very strongly
encouraged to have a will. Given the costs of probate, etc.,
it would likely be cheaper to have the government offer to pay
some minimal fee for completing a will.
b) Individuals should also be very strongly encouraged to
discuss planning for multiple eventualities including the level
of medical care desired if mentally incapacitated, disposition
of one's body, organ donation, etc. Thus although advanced directives
may not have been effective in the past, their implementation
could be substantially improved relatively easily. These decisions
should be part of an electronic personal/medical record, that
is protected for privacy, but available to caregivers, physicians,
and hospitals in case of an emergency so that the person is
treated in accordance with his/her wishes.
2. The questions raised in Chapter 3, about whether we benefit
or harm the person by extending a life that is terribly painful
or extremely burdensome to those the person loved most, are difficult,
and they do not have a single answer. We need guidelines for
caregivers of individuals with a variety of medical problems,
but especially of the infirm elderly. The Department of Health
and Human Services should commission the Institute of Medicine
to develop guidelines regarding the use of various levels of treatment
based on benefit to the patient, difficulty of the procedure and
likely complications, and cost, for patients in various stages
of dementia. What are the criteria and considerations for selecting
or for recommending against certain procedures at different stages?
3. There should be a National Commission composed of members
with very diverse views (not just the conservative right) to discuss
and recommend guidelines about how health care resources should
be distributed. At a time when parts of some of our large cities
have infant mortalities rivaling the third world, and obesity
in infants and young adults is skyrocketing, especially among
the poor, how should the total national health expenditure be
allocated among different groups? Once a portion has been allocated
to elderly individuals, how should that resource be divided to
fund the various categories of care, including that of the demented
These are very serious issues. The report of the President's Council
on Bioethics provides answers from a very restricted perspective
and thus it, unfortunately, cannot serve as an enlightened guide
as we try to cope with these critical challenges.
Janet D. Rowley