oxford handbook of bioethics

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have to provide long-term care, few would condemn them unless the problem of prolonged senescence arises. We simply cannot predict the future, but over the last century we have seen a dramatic rise in life expectancy, and it is hard to imagine that the addition of more healthy years would be widely deemed contrary to human dignity.

But there is reason to urge extreme caution. The technology to slow the aging process may be coming nearer to reality, yet the goal of prolongevity has not been carefully considered ( Juengst et al. 2003). In a time when biotechnology is allowing for the reconstruction of both nature and human nature, all thoughtful citizens must ponder the implications of potentially dramatic change. Of the many possible biotechnological goals on the horizon, which ones are likely to enhance the human condition, and which ones are likely to diminish human dignity? We think of the provocative developments in therapeutic cloning, in fertility and reproduction, in organ procurement and transplantation, in genetic testing and therapy, or in the treatment of a myriad of illnesses, and our collective breath is taken away by the pace of change. But we are also rightly haunted by the reality that, while biotechnological powers grow, human nature has in no obvious way progressed with regard to unselfish behavior, humility, peace, and equality. Thus, we raise the question of the very nature of goodness, and whether some biotechnological developments divert us from growth in virtue, or even tempt us to create a new class of an ageless elite that inevitably begins to look down upon the ordinary older adult as a misfit.

Should we move forward in the twenty-first century as bold new ‘co-creators’ of our somewhat malleable human nature, or should we accept a more humble approach that endorses a caring and just stewardship over human nature more or less as it is, seeking therapies rather than transformations? At least in the area of decelerated aging, where therapy and enhancement merge, we will probably move forward. Progress takes creativity, and in the meanwhile, we must deal as humanely as possible with the major moral, social, economic, familial, and medical challenges of an aging society — the death of the mind before the death of the body.

DEATH AND DEMENT IA

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The syndrome of dementia is an irreversible decline in cognitive abilities that causes significant dysfunction. Like most syndromes, dementia can be caused by a number of diseases. In the nineteenth century, for example, a main cause of dementia was syphilis. Currently, as a result of dramatic increases in average human life expectancy, dementia is caused primarily by a number of neurological diseases associated with old age. Dementia is distinguished

from ‘pseudo-dementia’ because the latter is reversible; for example, depression, extreme stress, and infection can cause dementia but with treatment a return to a former cognitive state is likely. Dementia is also distinguished from ‘normal age-related memory loss’, which effects most people by about age 70 in the form of some slowing of cognitive skills and a deterioration in various aspects of memory.

Although dementia can have many causes, the primary cause of dementia in our aging societies is Alzheimer’s disease (AD). Approximately 60 per cent of dementia in the American elderly and worldwide in industrialized nations is secondary to AD (US General Accounting Office 1998). This discussion will focus on so-called ‘Alzheimer’s dementia’ in order to illustrate ethical issues that pertain to all progressive dementias. Epidemiologists differ in their estimates of late-life AD prevalence, but most studies agree roughly on the following: about 1 – 2 per cent of older adults at age 60 have probable AD, and this percentage doubles every five years so that 3 per cent are affected at age 65, 6 per cent at age 70, 12 per cent at age 75, and 24 per cent by age 80. While some argue that those who live into their nineties without being effected by AD will usually never be affected by it, this is still speculative. According to a Swiss study, 10 per cent of nondemented persons between the ages of 85 and 88 become demented each year (Aevarsson 1996). There are very few people in their late forties and early fifties who are diagnosed with AD. Without delaying or preventive interventions, the number of people with AD, in the United States alone, will increase to 12 to 14 million by 2050. These numbers represent a new problem of major proportions and immense financial consequences for medicine, families, and society.

Various stage theories of disease progression have been developed. However, in clinical practice, professionals speak roughly of three stages. In mild stage dementia, the newly diagnosed patient has significant cognitive losses resulting in disorientation and dysfunction, and often displays affective flatness and possibly depression. In moderate stage dementia, the patient forgets that he or she forgets, thereby gaining relief from insight into losses. Some patients will at this point adjust well emotionally to a life lived largely in the pure present, although some long-term memories are still in place. The recognition of loved ones is usually still possible. However, as many as a third of patients in the moderate stage will struggle with emotional and behavior problems, including agitation, combativeness, paranoia, hallucinations, wandering, and depression. The advanced stage of dementia includes a loss of all or nearly all ability to communicate by speech, inability to recognize loved ones in most cases, loss of ambulation without assistance, incontinence of bowel and/or bladder, and some weight loss due to swallowing difficulties. The advanced stage is generally considered terminal, with death occurring on average within two years. AD, however, is heterogeneous in its manifestations, and defies simplistic staging.

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A Fundamental Moral Question: Do People with Dementia ‘Count’?

Despite the seriousness of dementia and the responsibilities it creates for caregivers, it is ethically important that the person with dementia not be judged by ‘hypercognitive’ values (Post 2000). The self is not cognition alone, but is rather a complex entity with emotional and relational aspects that should be deemed morally significant and worthy of affirmation (Sabat 2001). A bias against the deeply forgetful is especially pronounced in ‘personhood’ theories of moral status in which persons are defined by the presence of a set of cognitive abilities (Kitwood 1997). After discussion of the disparities in bioethical thinking about what constitutes a person, Stanley Rudman concludes, ‘It is clear that the emphasis on rationality easily leads to diminished concern for certain human beings such as infants . . . and the senile, groups of people who have, under the influence of both Christian and humanistic considerations, been given special considerations’ (1997: 47). Often, the personhood theorists couple their exclusionary rationalistic views with utilitarian ethical theories that are deeply incoherent with regard to life and death. As Rudman summarizes the concern, rationality is too severe a ground for moral standing, ‘allowing if not requiring the deaths of many individuals who may, in fact, continue to enjoy simple pleasures despite their lack of rationality’ (1997: 57). Of course, in the real world of families, love, and care, personhood theories have no practical significance.

The philosophical tendency to diminish the moral status or considerability of people with dementia is also related to a radical differentiation between the formerly intact, or ‘then’, self and the currently demented, or ‘now’, self. The reality is that until the very advanced and even terminal stage of AD, the person with dementia will usually have sporadically articulated memories of deeply meaningful events and relationships ensconced in long-term memory. It is wrong to bifurcate the self into ‘then’ and ‘now’, as if continuities are not at least occasionally striking (Kitwood 1997; Sabat 2001). This is why it is essential that professional caregivers be aware of the person’s life story, making up for losses by providing cues toward continuity in self-identity. Even in the advanced stage of dementia, as in the case presented at the outset of this chapter, one finds varying degrees of emotional and relational expression, remnants of personality, and even meaningful nonverbal communication as in the reaching out for a hug.

The fitting moral response to people with dementia, according to classical Western ethical thought and related conceptions of common human decency, is to enlarge our sense of human worth to counter an exclusionary emphasis on rationality, efficient use of time and energy, ability to control distracting impulses, thrift, economic success, self-reliance, self-control, ‘language advantage’, and the like. As Alasdair MacIntyre argues, we have made too much of the significance of language, for instance, obscuring the moral significance of species who lack

linguistic abilities, or human beings who have lost such abilities (MacIntyre 1999). It is possible to distinguish two fundamental views of persons with dementia. Those in the tradition of Stoic and Enlightenment rationalism have achieved much for universal human moral standing by emphasizing the spark of reason (logos) in us all; yet when this rationality dissipates, so does moral status. Those who take an alternative position see the Stoic heritage as an arrogant view in the sense that it makes the worth of a human being entirely dependent on rationality, and then gives too much power to the reasonable. This alternative view is generally associated with most Jewish and Christian thought, as well as that of other religious traditions in which the individual retains equal value regardless of cognitive decline. As the Protestant ethicist Reinhold Niebuhr wrote, ‘In Stoicism life beyond the narrow bonds of class, community, and race is affirmed because all life reveals a unifying divine principle. Since the principle is reason, the logic of Stoicism tends to include only the intelligent in the divine community. An aristocratic condescension, therefore, corrupts Stoic universalism’ (1956: 53).

Diagnostic Truthtelling

Diagnostic truthtelling in the context of dementia should be handled as it is in other medical contexts: be as truthful as information permits while attending to the patient’s need for social, emotional, spiritual, and practical support. Compassionate diagnostic disclosure is a moral act of respect for persons, an opportunity for human resilience and community, and a necessary practical step toward future planning.

In serving on more than 120 ethics panels organized by Alzheimer’s Association chapters across the United States and Canada in the late 1990s, comprised of leading physicians and other health professionals caring for those with dementia, as well as of family caregivers and affected patients, I did not find a single individual among an estimated 880 who thought that compassionate honesty was not the best policy. There were disagreements about optimal emotional and relational supports, precise wording and approach, and whether to inform the patient together with the family or independently.

There are some poor excuses for deceit and nondisclosure:

Anxiety. The idea of denying the truth to protect a patient from anxiety underestimates the remarkable human capacity to deal creatively and resiliently with the implications of serious diagnoses, and denies the power of a caring family or community to provide emotional healing. Many patients, when provided with a diagnosis, are actually relieved of the anxiety that stems from uncertainty. The ways in which people cope with a diagnosis need to be empirically examined, but if we were to argue that anxiety-related behaviors justify nondisclosure or deceit, then in the final analysis no patient would be told of any serious diagnosis,

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with disastrous results. Clinically significant depression, however, indicates a more cautious and gradual approach than might otherwise be the case. Secondly, a diagnosis and its emotional challenges to the patient mobilize family and community to provide the care and acceptance without which only further isolation is possible.

Culture. The physician may encounter some patients from cultures in which the model of nondisclosure to the patient is still in place, and families still operate in a highly ‘protective’ manner. However, it is well documented that individuals often want diagnostic information despite cultural pressures to the contrary. A physician should never presume to withhold information unless the patient specifically requests this. Professional commitment is to patients, not cultures. Moreover, cultures can have moral blind spots that are only gradually modified through interacting with other traditions, including the tradition of diagnostic truthtelling on the basis of human dignity.

Lack of objectivity. The syndrome of dementia is comprised of a cluster of symptoms. The core feature of dementia is decline in cognitive abilities that causes significant dysfunction. Such cognitive dysfunction is reasonably objective. Like most syndromes, dementia can be caused by a number of diseases. All possible conditions — e.g. pseudo-dementia, dementia, and Alzheimer’s disease (AD) — can and should be supportively discussed with patients, and, when possible, treated with consent. Not to present reasonably clear diagnostic information is to disenfranchise the person who is experiencing an illness — and usually is well aware of some losses — and to create a climate of distrust that will ultimately serve no good purpose.

Diagnostic truthtelling is the necessary beginning point for an ethics of ‘precedent autonomy’ for those who wish to implement control over their futures through advance directives such as durable power of attorney for health care, which allows a trusted loved one to make any and all treatment decisions once the agent becomes incompetent. This can effectively be coupled with a living will or some other specific indication of the agent’s material wishes with regard to end-of- life care. Unless the person knows the probable diagnosis in a timely way while still competent to file such legal instruments, the risk of burdensome medical technologies is increased. Even in the absence of such legal forms, however, many technologically advanced countries will allow next of kin to decide against efforts to extend life in severe dysfunction. This is important because many patients suffer incapacitating cognitive decline long before having a diagnostic work up; those who are diagnosed early enough to exercise their autonomy can become quickly incapacitated.

In the United States the Alzheimer’s Disease Association does not support mandatory reporting of a probable diagnosis of AD to the Department of Motor Vehicles. There are a number of reasons for this caution, one of which is patient confidentiality. Reporting requirements might discourage some persons from

coming into the clinic for diagnosis at a time early in the course of disease when drug treatments are most clearly indicated. Eventually all people with AD must stop driving when they are a serious risk to self or others. Family members must know that if a loved one drives too long and injures others, they may even be held financially liable and insurers may not be obliged to cover this liability. Ideally, a privilege is never limited without offering the person ways to fill in the gaps and diminish any sense of loss. An ‘all or nothing’ approach can and should be avoided. Compromise and adjustments can be successfully implemented by those who are informed and caring, especially when the person with AD has insight into diminishing mental abilities and loss of competence. The affected person should retain a sense of freedom and self-control if possible (Alzheimer’s Disease Association 2001).

Truthtelling, which is clearly the accepted norm in modern medical care, has been encouraged by the emergence of new treatments such as cholinesterase inhibitors, and by an appreciation for the rights and needs of patients as they and their families plan for the future, financially and otherwise. The Association’s statement (2001) includes the important argument that disclosing the diagnosis early in the disease process allows the person to ‘be involved in communicating and planning for end-of-life decisions’. Diagnostic truthtelling is the necessary beginning point for responsible stewardship over one’s future through advance directives such as durable power of attorney for health care, which allows a trusted loved one to make any and all treatment decisions once the agent becomes incompetent. This can effectively be coupled with a living will or some other specific indication of the agent’s material wishes with regard to end-of-life care. Unless the person knows the probable diagnosis in a timely way while still competent to file such legal instruments, the risk of burdensome medical technologies is increased.

With early treatments available, with options for research participation, with the availability of support groups where these exist, with many patients already having a significant knowledge base through informational technologies, with the need to be protected against the aggressive use of burdensome medical technologies as the disease progresses, and with the importance of financial, family, and career planning, it is simply impossible to defend the old paternalistic model of the physician – patient relationship. It is the job of the physician and the health care team, including pastoral care as requested, to disclose a diagnosis of dementia and, when possible, the disease cause underlying it, in a sensitive and supportive way. In individual cases, this may require different approaches, timing, and venues, but there is no alternative consistent with human dignity, resilience, and care. Where the patient can no longer retain information in a sustained and meaningful manner, diagnostic truthtelling is impossible and uncalled for. For those whose ability to retain information is unclear or fast fading, one trusts in the physician to improvise as the case merits.

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Quality of Life

Emotional, relational, aesthetic, and symbolic well-being are possible to varying degrees in people with progressive dementia (Kitwood 1997). Quality of life can be much enhanced by working with these aspects of the person.

Kitwood provides indicators of well-being in people with severe dementia: the assertion of will or desire, usually in the form of dissent despite various coaxings; the ability to express a range of emotions; initiation of social contact (for instance, a person with dementia has a small toy dog that he treasures and places it before another person with dementia to attract attention); affectional warmth (for instance, a woman wanders back and forth in the facility without much socializing, but when people say hello to her she gives them a kiss on the cheek and continues her wandering). In enhancing quality of life it is crucial to accept the reality of the person with dementia rather than try to impose one’s own reality. In the mild stage of AD there is much to be said for trying to orient a person to reality; at some point in moderate AD, however, it becomes oppressive to impose reality upon them. The aesthetic well-being available to people with AD is obvious to anyone who has watched art or music therapy sessions. In some cases, a person with advanced AD may still draw the same valued symbol, as though through art a sense of self is retained (Firlik 1991). The abstract expressionist de Kooning painted his way through much of his fourteen-year struggle with AD until his death in 1996. Good caregivers know how to work with remaining capacities in the person with dementia, rather than against them.

In general, quality of life is a self-fulfilling prophesy. If those around the person with dementia see the glass as half empty and make no efforts to relate to the person in ways that enhance his or her experience, then quality of life is minimal. Steven R. Sabat, who has produced the definitive observer study of the experience of dementia, underscores the extent to which the dignity and value of the person with dementia can be maintained through affirmation and an existential perspective (Sabat 2001).

A Relatively ‘Good’ Dying

AD is on the leading edge of the debate over physician-assisted suicide and euthanasia. The policies that emerge from this debate will have monumental significance for people with dementia, and for social attitudes toward the task of providing care when preemptive death is cheaper and easier. The Association affirms the right to dignity and life for every Alzheimer patient, and cannot condone suicide (Alzheimer’s Disease Association 2001).

The Association asserts that the refusal or withdrawal of any and all medical treatment is a moral and legal right for all competent Americans of age, and this right can be asserted by a family surrogate acting on the basis of either ‘substituted

judgement’ (what would the patient when competent have wanted) or ‘best interests’ (what seems the most humane and least burdensome option in the present).

The Association concludes that AD in its advanced stage should be defined as a terminal disease, as roughly delineated by such features as the inability to recognize loved ones, to communicate by speech, to ambulate, or to maintain bowel and/or bladder control. When AD progresses to this stage, weight loss and swallowing difficulties will inevitably emerge. Death can be expected for most patients within a year or two, or even sooner, regardless of medical efforts. One useful consequence of viewing the advanced stage of AD as terminal is that family members will better appreciate the importance of palliative (pain medication) care as an alternative to medical treatments intended to extend the dying process. All efforts at life extension in this advanced stage create burdens and avoidable suffering for patients, who could otherwise live out the remainder of their lives in greater comfort and peace. Cardiopulmonary resuscitation, dialysis, tube-feeding, and all other invasive technologies should be avoided. The use of antibiotics usually does not prolong survival, and comfort can be maintained without antibiotic use in patients experiencing infections. Physicians and other health care professionals should recommend this less burdensome and therefore more appropriate approach to family members, and to persons with dementia who are competent, ideally soon after initial diagnosis. Early discussions of a peaceful dying should occur between persons with dementia and their families, guided by information from health care professionals on the relative benefits of a palliative care approach (Alzheimer’s Disease Association 2001).

Avoiding hospitalization will also decrease the number of persons with advanced AD who receive tube-feeding, since many long-term care facilities send residents to hospitals for tube placement, after which they return to the facility. It should be remembered that the practice of long-term tube-feeding in persons with advanced dementia began only in the mid-1980s after the development of a new technique called ‘percutaneous endoscopic gastrostomy’ (PEG). Before then, such persons were cared for through assisted oral feeding. In comparison with assisted oral feeding, however, long-term tube-feeding has no advantages, and a number of disadvantages (Alzheimer’s Disease Association 2001).

Gastrostomy tube-feeding became common in the context of advanced dementia and in elderly patients more generally after 1981, secondary to the development of the PEG procedure. The PEG procedure was developed by Dr Michael Gauderer and his colleagues at Rainbow Babies and Children’s Hospital in Cleveland (1979 – 80) for use in young children with swallowing difficulties. The procedure required only local anesthesia, thus eliminating the significant surgical risk associated with general anesthesia and infection (Gauderer and Ponsky 1981). Gauderer wrote, two decades later, that while PEG use has benefited countless patients, ‘in part because of its simplicity and low complication rate, this minimally invasive procedure also lends itself to over-utilization’ (Gauderer 1999). Expressing moral concerns about the proliferation of the procedure, Gauderer indicates that as the third decade of

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PEG use begins to unfold, ‘much of our effort in the future needs to be directed toward ethical aspects’ (1999: 882). PEG is being used more frequently even in those patients for whom these procedures were deemed too risky in the past.

For over a decade, researchers have underscored the burdens and risks of PEG tube-feeding in persons with advanced dementia. The mounting literature was well summarized by Finucane et al., who found no published evidence that tube-feeding prevents aspiration pneumonia, prolongs survival, reduces risks of pressure sores or infections, improves function, or provides palliation in this population (Finucane et al. 1999; Gillick 2000; Post 2001).

Families often perceive tube-feeding as preventing pneumonia or skin breakdown, and many assume that it extends survival. These perceptions are erroneous. The main benefit of PEG is that it makes life easier for the informal family caregiver who, for reason of competing duties or perhaps physical limitation, cannot find the time or energy to engage in assisted oral feeding. Yet PEG use is not really ‘easy’, because it has its technological complexities, and the recipient will usually have diarrhea. In some cases, physical restraints are used to keep a person from pulling on the several inches of tube that extend out of the abdomen. One wonders if assisted oral feeding is not easier after all. Regardless, purported technical ease and efficiency do not mean that these technologies should be applied. Should persons with advanced progressive dementia ever be provided with PEG? In general, assisted oral feeding and hospice are the better alternative to tube-feeding, although in practice there will be some cases in which the limited capacities of an informal family caregiver do justify tube-feeding as the ethically imperative alternative to starvation when the ability to swallow has begun to diminish. Ideally home health aides would make assisted oral feeding possible even in these cases, but this is not a priority in the current health care system. Institutions, however, should uniformly provide assisted oral feeding as the desired alternative to tube-feeding, a measure that would profoundly obviate the overuse of this technology.

There will be many family caregivers who have no interest in PEG use and who feel that they are being loyal to their loved one’s prior wishes. A physician should expect this response. A study included in-person interviews of eighty-four cognitively normal men and women aged 65 years and older from a variety of urban and suburban settings (including private homes, assisted-living apartments, transitional care facilities, and nursing homes). Three-fourths of the subjects would not want cardiopulmonary resuscitation, use of a respirator, or parenteral or enteral tube nutrition with the milder forms of dementia; 95 per cent or more would not want any of these procedures with severe dementia (Gjerdingen et al. 1999). These subjects were adequately informed of the burdens and benefits of such interventions.

Physicians and other health care professionals should recommend this less burdensome and therefore more appropriate approach to family members, and to persons with dementia who are competent, ideally soon after initial diagnosis. Early discussions of a peaceful dying should occur between persons with dementia and