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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

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., M.S.            

                        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 and die.

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 to fail.

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.

Alfonso Gómez-Lobo


***

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?

My Recommendations:

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 elderly individuals?

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

 


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