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Volume 9, Number 1

INTIMATE CARE FOR THE DYING: THE NEED FOR A NEW SOCIAL MODEL

MICHAEL M. BURGESS, PHD

The emotionally, practically and financially costly work of supporting dying persons is performed primarily by family but also by friends and some health professionals. Society expects those who give intimate care to the dying to carry these additional responsibilities without any reduction of normal domestic and vocational duties. The health care system gives some assistance to dying persons and their caregivers through the provision of certain standardized services such as palliative care, home care and family support through social services. To some extent these services reduce the practical and financial burdens, but they continue the tradition of private subsidization of the individual needs of the dying, such as company and conversation. The standardized response of the health care sectors, which conceals the work of intimate caregivers, does not fully recognize the contribution or the needs of intimate caregivers. A wider sharing of the costs of intimate caregiving, for example through subsidized time off would help to meet the intimate needs of dying persons, integrate the dying into our culture and help society to recognize the experience of dying as a source of caring and social creativity.

This paper is about the needs of family, friends and health care practitioners who attempt to meet the intimate and profoundly personal needs of dying persons. Giving emotional support and company to a dying person is exhausting. In numerous reports, levels of anxiety, communication problems, educational and emotional needs of staff and families are discussed, and attitudes of health care providers toward dying patients and their families,1,2 the levels of stress encountered by health professionals3 and caring for persons who are grieving are considered, including those who are grieving even while caring for the dying person.4 In this paper I discuss the status of dying persons that qualifies them for special attention. I also consider why intimate caregivers but not society accept these heavy personal costs and show how public policy and institutional responses to dying persons combine to conceal the costs of meeting the intimate needs of the dying and their caregivers. Finally, drawing on recent literature, I suggest that the responses of the home care and non-health care sectors should include such support as leave time with financial support for intimate caregivers. A caring society must accept the need for social investment in the caregivers and provide them with opportunities to reconsider their lives and possibly to change their vocations or orientations to work or family.

Experiences of Caring for the Dying Person

Many of the needs of a dying person are related to emotional well-being and the meaningfulness of that individual's life. Sedation, pain relief and control over life support are often easier to achieve and are less important than the need for company, emotional support and such small pleasures as attention to personal appearance. Frequently there is a relaxation of rules, for example to accommodate visiting, in recognition of the uniqueness of the dying person as being more meaningful than compliance with therapeutic protocols and competent delivery of medical services.5-7 In a survey of "palliative care needs" in long-term care facilities, respondents identified more time with family as the most important requirement and asked for more private space for this purpose.2

Often, the intimate caregivers for dying persons are friends and family members, but they may also be sensitive health care practitioners8 or volunteers. In contrast to providing services, intimate caregiving sometimes is simply "being with" the dying person. The caregiver may just sit in the same room, hold hands, perhaps talk, take the person out for dinner or bring in a special meal. The visitor might consider having the dying person come home to stay for the weekend. In this paper, the term "intimate caregivers" refers to those who fulfil these aspects of dying person's lives, whether explicitly requested or sensitively discerned.

Privileged Status to Access Special Resources

Dying persons have privileged access to the time, money and emotions of their intimate caregivers. When someone is dying, their demands appear to be short term and minor, relative to the imposing fact of their imminent death. When they reflect on their participation, caregivers may fear feelings of guilt if they do not respond to the dying person. Family or friends may reflect that they will want similar attention and constantly remind themselves of the unpredictability of life. They even may feel a sense of honour in being chosen as an intimate caregiver for the dying. Often, for reasons of goodwill and perhaps of guilt and honour, intimate caregivers are willing to dedicate an extraordinary amount of time, emotional energy and financial resources to such care.

At present, families, friends and occasionally health care providers must absorb the emotional and practical costs of caregiving, typically while retaining the responsibility of their other duties. After the death, time off from work is limited to a few days for grieving and attending the funeral. Many caregivers use vacation time or take leave without pay. Exhaustion due to long and emotionally draining hours may result in complaints of reduced attention to work, that one is less productive, inquiries into one's well-being or even suspicions of substance abuse. After such an experience, many caregivers need several months to recover, may terminate their employment or be dismissed.

How Caring Are We as a Society?

Society must balance concern for the dying and those close to them against the interests of others such as employers and clients. Assistance from health care facilities and some home care services may reduce the dying person's dependence on intimate caregivers, but the latter often are left without recognition or compensation for the excess emotional, practical and financial costs of intimate care.

Society's neglect may be seen to promote a stable society and workplace. Although most of us must at some time serve as a caregiver, we accept as a reasonable demand a few days off to mourn and to attend the funeral. Under the stress of intimate caregiving, an employee or contractor may seem absent or distracted, thereby posing an inconvenience to employers or clients. A caregiving parent or partner will have less time and attention for other domestic responsibilities and emotional relationships. However, neither the dying person nor the caregivers have the power to change society's response to death. When a person dies, the intimate caregivers must make up the time lost from vocational and domestic duties, and this encourages them quietly to resume the business of living.

Current Responses to Dying

Innovations in health care have made the institutional setting more hospitable to dying persons and their caregivers, and often have removed obstacles to personal and intimate care. Living wills, powers of attorney and advance directives increase the dying person's control over the care they receive, particularly when they are no longer able to speak for themselves. As instruments, they help both intimate and professional caregivers to make decisions when dying persons no longer can direct their own care. The increased sophistication of geriatric medicine has helped us understand that changes in individual capabilities, such as mobility, often produce a different set of social needs. This medical specialty is sensitive to the social and emotional needs of the elderly and may affect social attitudes toward the dying, even those who are not elderly. Unfortunately, the influence of geriatric medicine is limited by the current distribution of resources, of training facilities and the need to work within traditional institutions.9 The provision of palliative and hospice care recognizes that, because of their focus on those who can recover, active general hospitals cannot pay adequate attention to the special needs of the dying. Much of their suffering is due not to physical pain but to emotional and psychological anguish. Within specialized-care settings, nurses and other providers can respond more fully to the particular needs of the dying.10'11

None of geriatric medicine, palliative care and hospices can meet the intimate needs of dying persons and their caregivers, in part because they are directed through health care institutions.12,13 However, demands on caregivers' time and resources are reduced if the dying person is in an institution. Dramatic efforts directed at more soluble problems such as relief of symptoms do not alleviate, and may conceal, the financial, emotional and practical costs of the significant intimate needs of companionship and special attention. When professionals or institutions attempt to meet these needs, adequate reimbursement is seldom given.

Home care services may provide limited relief to caregivers and may address directly some of the intimate needs of dying persons; however, when they do so, the practical and emotional costs of this care may increase, because then it is more difficult for the caregiver to refuse to set limits or to seek respite. Note, however, that although home care decreases the costs for traditional institutions and indirectly for society, it does little to relieve caregivers of their daily routines so that they can serve the dying.

Dying persons most need compassion and caring focused upon them as unique individuals. Because that is an unrealistic goal for health care institutions, the efforts described above focus on reducing barriers to family caregiving and perhaps to providing opportunities for others to assist with such care. The net result is to privatize the costs of caring and of dying.

What Is Needed?

Anecdotal accounts of shared responsibility for intimate caregiving suggest how we could better support intimate caregivers. In ethnic or religious communities, dying persons and their caregivers often receive meals, emotional support and respite care from volunteers. In some rural, agrarian communities, flexible work hours and roles may allow greater distribution of responsibilities and sharing of the costs of caring for dying persons; for example, one household may cook for two, and several farmers may help to bring in another's crop. Often individuals in urban communities do not have helpful ethnic or religious affiliations, and social resources may be inaccessible or unhelpful to those with atypical religious or ethnic backgrounds. Urban life often lacks the flexibility to permit the rearrangement of responsibilities and the wider distribution of the costs of caring.

Talcott Parsons14 characterized the sick role as "legitimate time off" and described how people who are ill are relieved of the usual domestic and vocational responsibilities. In exchange, persons seek medical attention, restrict their activities and follow medical recommendations until they can assume full domestic and vocational responsibilities. Parsons' model describes something that in contemporary society is missing from the support of an intimate caregiver of the dying, namely, society' s acceptance of the redistribution of duties and costs so that the family can care for dying persons. However, some have criticized Parsons because of his orientation to the maintenance of the status quo through the use of medical authority to legitimize or sanction temporary time off from work and domestic responsibilities on condition that patients behave in a manner likely to return them to full social responsibility.

Recent explorations of illness experience suggest that illness may present an opportunity for creative self discovery.15 In illness we discover the tenuous grasp we have on health; this may provoke us to consider important changes in our roles and responsibilities, rather than returning to the status quo. Clearly, caring for the dying has the same potential for personal growth. When we confront our own mortality or assist others to find meaning in their last days of life, we may gain a new perspective on what for us is of ultimate importance. Many have discovered flexibility in the work force and innovation in the marketplace and have made new attempts to live spiritually. In modern society, opportunities are rare for individuals to evaluate their life values and goals, change jobs or careers or emphasize different values. Caring for the dying may be a fertile ground for discovering these opportunities if we make available emotional and reflective time.

Professionals must pay greater attention to the fact that intimate caregivers often carry the costs of meeting the unique needs of the dying. The tendency to respond through institutional and professional channels absorbs social resources in providing services that alone do not meet all the needs of the dying. In determining their specific needs and those of their intimate caregivers, we must be careful to include in our responses more than professional and institutional services and to distinguish frustration with institutional settings from the actual needs of the dying and their caregivers. For example, Binney, Estes and Ingman16 found that when physician and medical institution involvement is increased there is a decrease in the availability of social (or nonmedical) services to the elderly. When physicians and hospitals request social supportive services for the elderly, these needs receive better funding because the problems are labelled "medical conditions."17 Thus, health professionals and institutions have better access to social resources and are seen as competent judges of the claimant's need for "time-off," so their demands tend to eclipse the needs of the dying and their intimate caregivers. Therefore, any important changes in this area will require advocacy by physicians and administrators.

Conclusions

As a society we must recognize that it is legitimate to redistribute vocational and domestic responsibilities so that caregivers may give personal and personally costly care to the dying. Such intimate caregiving should be given a status similar to childbearing and education, maternity and sometimes paternity leave, which are supported through the tax base. In doing so, we gain more than an opportunity to live and to die well ourselves. Providing time and support for the dying may also allow caregivers to reflect on their own lives and may stimulate vocational and personal changes, which ultimately are socially beneficial through a more flexible work force or supportive home life. The provision of compassionate personal support for caregivers and relief time from work for care of a dying person may help us recognize the honour of being close to one who is dying and to take advantage of the opportunity for self-discovery that attends such caring. In our society such a response would recognize the creative possibilities of caring for dying persons and prepare the way for a merging of the experiences of death, dying and caregiving with domestic, vocational and market activities.

References

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  2. Rutman D, Parke B: Palliative care needs of residents, families, and staff in long-term care facilities. J Palliat Care 1992; 8 (2): 23-29
  3. Vachon MLS: Occupational Stress in the Care of the Critically Ill, the Dying, and the Bereaved, Hemisphere Pub, Washington, 1987
  4. Mitchell KR, Anderson H: All Our Losses, All Our Griefs: Resources for Pastoral Care, Westminster Pr, Philadelphia, 1983
  5. Coleman K: The case: an episode of non-compliance. Second Opin 1992; 17 (3): 69-71
  6. Frank AW: Commentary: "Normal" noncompliance. Ibid: 72-77
  7. Idem: At the Will of the Body: Reflections on Illness, Houghton Mifflin, Boston, 1991
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  9. Thompson EH Jr: Palliative and curative care: nurses attitudes toward dying and death in the hospital setting. Omega 1985; 16: 233-242
  10. Wilkinson 5: Factors which influence how nurses communicate with cancer patients. J Adv Nurs 1991; 16: 677-688
  11. Madfes IS: Death Anxiety and Related Characteristics Among Hospice and Nonhospice Nurses. PhD dissertation. California School of Professional Psychology, Berkeley/Almeda, Calif., 1990
  12. Waitzkin H: The Politics of Medical Encounters, Yale U Pr, New Haven, Conn, 1991
  13. Kleinman A: The illness Narratives: Suffering, Healing and the Human Condition, Basic, New York, 1988
  14. Parsons T: The Social System, Free Pr, New York, 1951
  15. Kleinman A: The illness Narratives: Suffering, Healing and the Human Condition, Basic, New York, 1988: 31-55
  16. Binney EA, Estes CL, Ingman SR: Medicalization, public policy and the elderly: Social services in jeopardy? Soc Sci Med 1990; 30: 761-771
  17. Azzarto J: Medicalization of the problems of the elderly. Health Soc Work 1986; 11: 189-195
From the Department of Medical Bioethics, University of Calgary, Calgary, Alta.
Part of the symposium "Advance Treatment Directives: Confronting Death Together"
Correspondence to: Dr. Michael M. Burgess, Medical Bioethics, Faculty of Medicine, University of Calgary, 3330 University Dr. NW, Calgary, AB T2N 4N1