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Volume 13, Number 4

Prospective
Celebrating Humane Health Care: Palliative Care Provides a Model

M. Jane Fulton, PhD, John F. Seely, MD

The old saying, "Everyone wants to go to heaven, but nobody wants to die first" symbolizes our reluctance to talk about and face the inevitability of death. This reluctance adds to our distress when we, or those we love, face life-threatening illness and death. The modern hospice (palliative care) movement began with Dame Cicely Saunders in the United Kingdom in the 1950s. Her early work focussed attention on the control of pain and other symptoms in patients dying with cancer. Growing recognition of the widespread neglect of the needs of the dying in hospitals and other institutions, led to the opening of St. Christopher's Hospice in London, England in 1967.

Neglect of the dying still persists in North America, despite the growth in our knowledge and ability to control their symptoms and despite an increase in public support for the palliative-care option. During the past 12 years, Humane Medicine (now Humane Health Care International) has encouraged a broad discussion of the complex issues surrounding death and the dying process, and has helped to raise professional and public awareness of palliative care as a model of humane and compassionate care for those facing terminal illness. Since the first issue of Humane Medicine many individuals, such as Ted Keyserlingk1 Arthur Schafer,2 Margaret Somerville,3 John Dossetor et al.,4 and Abby Lynch,5 have discussed care choices for the dying, have described the potential benefits of palliative and hospice care, and have stimulated many to think deeply about the process of dying. We believe that palliative care has much to contribute to the humanization of medical practice and that it offers a more humane end to life than assisted suicide or euthanasia.

In this paper, we describe and compare acute care, palliative care, and euthanasia as approaches to terminal illness and dying. We also advocate that both the philosophy of palliative care and its compassion for the whole person be incorporated into acute care. Finally, we predict that improved availability of palliative care to those who are dying and related support for their families will reduce the perceived need and public support for euthanasia.

The Growth of Palliative Care

Choices for the care of the dying have increased dramatically since the 1 950s, when patients dying in hospitals were largely neglected on the grounds that nothing could be done to cure their disease or control their symptoms. Though neglect on these grounds persists in acute-care institutions, the options for the dying now include palliative care in hospice or other institutional settings, in the home with a mix of nursing assistance and homemaker care, and terminal care in the home with intermittent admission to institutions as needed for symptom control or caregiver relief.

Now the skills and knowledge of palliative care are brought to bear earlier in the disease process, when curative therapy is still being given. Moreover, the conditions for which palliative care is deemed appropriate have widened to include such conditions as AIDS or HIV infection, amyotrophic lateral sclerosis (ALS), and end-organ failure due to terminal liver heart, lung, or kidney disease.

Palliative care is both a philosophy and a discipline, which consists of a defined knowledge base, skills. and attitudes as complex as any in clinical medicine. This wholistic, person-centred care requires expert knowledge of multiple drugs, their interactions and the effects of organ failure on drug metabolism, meticulous symptom management, and great skill in interpersonal communication. It recognizes that the needs of the whole person embrace physical, emotional, social, and spiritual domains. Such care requires an interdisciplinary, collaborative approach, as well as attention to teamwork and team process. In palliative care, the family is part of the care unit, and awareness of both anticipatory grief and bereavement minimizes morbidity and mortality among the survivors.

Even when treatment aimed at a cure is discontinued, active palliative care continues; as Keyserlingk asserts:1

palliative care is a continuing moral and legal duty of physicians and institutions, no matter what the prognosis. In some cases, palliative care may include even surgery, not to effect a cure, but to make the patient as comfortable as possible for whatever time is left.

Only when their symptoms are controlled can patients engage in meaningful relationships with family and friends, and come to terms with the emotional, existential, and spiritual concerns.

This wholistic approach and the inclusion of family and friends prevents loneliness and abandonment and, along with members of the interdisciplinary team, encourages family members to explore such issues as quality of life, the spiritual and existential distress, and the limits of medical intervention during the dying process. Emotional care and social work, which supports the patient's family and friends, helps to relieve the patient's anxieties about their family responsibilities. Spiritual care provides all concerned with opportunities for new meanings, for reconciliation, for transformation, and forgiveness.

Euthanasia

In both Canada and the United States, major public support is being manifested for another option for the terminally ill that of assisted suicide or euthanasia. Support of euthanasia is anchored in a belief in personal autonomy6 that is:

  • the right to govern oneself;
  • a desire to determine when the burden of treatment is too great;
  • a need to remain free of pain; and
  • a fear of loneliness and abandonment.
Euthanasia may be driven by fears about the cost of dying, both financial and personal. Personal anxiety may heightened fears of losing control. Concerning this, Margaret Somerville notes that:7

The pro-euthanasia argument is based largely on a reasoned utilitarian approach: [namely] if a person is terminally ill and is going to die soon, it makes no moral difference and ought to make no legal difference if he or she dies naturally or through a lethal injection.

Like another emotionally charged health issue at the beginning of life abortion public concern about euthanasia, as a choice at the end of life, has polarized caregivers and families alike. The Rodriguez v. British Columbia case presented the Supreme Court of Canada with a request for physician-assisted suicide. The judges' decision denied the right of the individual to choose the time and circumstances of her death. In the judgement, the justices stated that: "given the concerns about abuse and the great difficulty in creating appropriate safeguards, the blanket prohibition on assisted suicide is not arbitrary or unfair."8

Euthanasia is based on a utilitarian view of life, and on a conviction that no other way exists to control suffering. Moreover, if such a practice is sanctioned as a medical act, it would change the character of medical practice and the quality of the relationship between the physician and patient. Physician-assisted suicide and euthanasia have been practised in the Netherlands for many years, and in the past decade both were the subject of several detailed studies.9 A survey in 1996 showed that the incidence of euthanasia increased from 1.9 to 2.3% of all deaths between 1990-1995. Because many of those euthanized would have died naturally without medical intervention, and since many others would have died of severe disease or its complications, reporting the incidence as a percentage of total deaths underestimates the extent of physician-assisted death. Furthermore, these reports seem to indicate that the physicians do not comply with the regulations for reporting or for obtaining necessary consultation beforehand. Many Dutch physicians seem to believe that it is appropriate to propose euthanasia to their patients, and it seems that a small but disturbing proportion of those who die by euthanasia do so without their expressed consent.10 Clearly, the elderly and other vulnerable members of society, who are under perceived pressure to end life, will potentially be at greater risk from these practices.

Active Treatment, Palliative Care, and Euthanasia

It is instructive to compare the goals and approaches of palliative care, with those of treatment in the tertiary-care setting,11 and those of assisted suicide and euthanasia. Table I, which provides a brief summary of the core beliefs and approaches of active treatment, palliative care, and euthanasia, exaggerates the differences for purposes of comparison and obscures "the grey areas" between these approaches. This is not to assert that any of these approaches is less compassionate or caring than any other; each in its own way and from its different perspective attempts to help the patient.

Palliative Care Teaches the Practitioner

The field of palliative care has profound insights to offer the practitioner and promises to do much to strengthen the practice of humane health care in all fields of medicine.12 The palliative-care team must focus with compassion on helping the patient to live each day in the face of death. Amid constant reminders that life is finite, the patient must complete unfinished business; deal with remorse, regret, or guilt; make amends; put their priorities in order; stop doing things which no longer make a difference; and live life fully in the present, with commitment and meaning.

Palliative care also provides a model of humane care that applies to the rest of medical practice. Medical practitioners are challenged to be more sensitive to the needs of the whole person, to incorporate the spiritual dimension into the prevailing biopsychosocial model of care, to combine active clinical care with compassionate wholistic care, while supporting the emotional and social needs of the patient and family.

We Need More Emphasis on Palliative Care

The increasing attention Canadians and Americans are giving to euthanasia and assisted suicide as alternative options for the terminally ill highlights the lack of adequate support for palliative care within the health-care professions and by governments. How can we justify the deliberate taking of life to prevent suffering as long as palliative care is not available? Canada lacks palliative-care services that are accessible and available to all citizens, particularly to those whose language and culture are neither English nor French. The medical and health professions have been slow to develop the field of palliative care and this is apparent in the lack of:

  • adequate clinical training at any level undergraduate, post-graduate, or continuing education;
  • any formal programs for advanced training in palliative care;
  • dedicated funding for research into the needs of the terminally ill; and
  • full-time faculty positions in palliative care in Canadian universities.
Serious attitudinal issues also exist within the medical profession. Many physicians still do not accord to pain control the same attention they give to fever control, or such symptoms as shortness of breath. Many physicians still behave as though they cannot accept that at some point all patients must die, that death is a part of life, and that the care of the terminally ill deserves as much attention as the care of acute illness. A careful reading of most modern medical textbooks would seem to suggest that patients either do not die, or that if they do, it is not the responsibility of the medical profession to care for them in their dying. Until and unless we change such attitudes, patients facing terminal illness will be encouraged to consider assisted suicide or euthanasia.

Palliative care is not simply an alternative to assisted suicide, euthanasia, or legalized medical termination of life. We should see such care as the least a civilized society can offer those facing terminal illness.13-15 All life-taking measures are gestures of despair and hopelessness, of giving up on living, and reflect a denial of the value of life. Moreover, as studies in Canada have shown, pleas for death by the terminally ill frequently reflect an underlying depression, because they desire to continue living once that depression is treated. In other cases, the desire for death is variable and inconsistent; it fluctuates over time, or may change from night to day. In other studies, the patient's desire for death is not motivated by pain or even fear of pain, but rather by a fear of being a burden to the survivors, or of losing control. For some, the taking of one's life represents an exercise of ultimate control over one's life. It is unlikely that such fears or concerns will be addressed adequately by the health-care system, but will depend on those with strong beliefs about the value of life. In any event, concerns over control do not justify the legalization of physician-assisted suicide or euthanasia.

Conclusion

Palliative care teaches us to affirm the goals of humane health care. As an inevitable consequence of the enormous advance in our understanding of human biology and the incredible power of modern science to probe the secrets of the body, traditional medical practice aims to diagnose and treat many diseases. As a result, medicine has become fixed on cure and control, and has come to view cure as an end in itself; rather than as a means to the end the relief of suffering. Humane health care promotes healing in the sense of making whole again. This includes dealing with emotional issues such as loneliness and fear, a search for meaning, and an existential exploration of the human spirit. As the statement of purpose of Humane Medicine (Humane Health Care International) asserted:

While science is making, and will continue to make, epic discoveries concerning the biological and molecular basis of human life, we need to make parallel discoveries about the spiritual, psychological, and social basis of human well-being We need both kinds of progress if physicians and other caregivers are to provide the kind of care both competent and compassionate that our people still hope to receive.

Palliative care invites us to focus on healing in emotional, social, spiritual, and physical areas. As a model of compassionate and competent care working together, palliative caregivers actively listen and help to alleviate the patient's pain and other symptoms. They draw on the members of an interdisciplinary team to address other concerns-not to provide instant solutions, but rather to provide a supportive environment and empathic witnessing, which permits patients to find meaning in what is happening to them and new ways of relating to themselves, their families and friends, and to their world. The palliative care team can guide the patient (as they prepare to die) in a search for meaning and reconciliation, and can help them see death as a way of closing the circle of life.

References

  1. Keyserlingk EW The right to natural death. Humane Med 1985;1:37-40.
  2. Schafer A. Legislating the right to die in peace. Humane Med 1985;1:34-6.
  3. Somerville MA. Unpacking the concept of human dignity in human(e) death: comment on "Human Dignity and Disease, Disability and Suffering." Humane Health Care Intern 1995;ll:148-51.
  4. Dossetor JB, et al. Confronting death together: the editors' introduction. Humane Med 1993;9:10-12.
  5. Lynch A. Response to suffering: "Mystery" as option. Humane Health Care Intern 1997;13:7-8.
  6. Wanzer S. Maintaining control in terminal illness: assisted suicide and euthanasia. Humane Med 1990;6:186-8.
  7. Somerville MA. Euthanasia in the media: journalists' values, media ethics and "public square" messages. Humane Health Care Intern 1997;13:19-20.
  8. Rodriguez v. British Columbia (Attorney-General), [1993] 3 5C.R. 519.
  9. Hendin H, Rutenfrans C, Zylicz Z. Physician-assisted suicide and euthanasia in the Netherlands: lessons from the Dutch. JAMA 1997;277: 1720-2.
  10. Dow S. Dutch laws linked to fears over euthanasia. The Age Melbourne July 4, 1997.
  11. Simmonds A. Decision-making by default: experiences of physicians and nurses with dying patients in intensive care. Humane Health Care Intern 1996; 122:168-72.
  12. MacLeod RD. Teaching holism in palliative care and hospice. Am J Hospice and Pall Care l997; Jan/Feb:12-15.
  13. Cassel EJ. The nature of suffering and the goals of medicine. New York, N.Y: Oxford University Press, 1991.
  14. Rando TA. Grief dying and death: clinical interventions for caregivers. Champaign, Ill.: Research Press Co., 1994.
  15. Stolberg S. Human dignity and disease, disability and suffering: a philosophical contribution to the euthanasia and assisted suicide debate. Humane Health Care Intern l995;11:144-7.
Correspondence and reprint requests to: M Jane Fulton, School of Natural and Health Sciences, Barry University, 11300 NE 2nd Avenue, Miami, Florida 33161.

The Part That Counts

The real work of a doctor... is not an affair of health centres, or public clinics, or operating theatres, or laboratories, or hospital beds. These techniques have their place in medicine, but they are not medicine. The essential unit of medical practice is the occasion when, in the intimacy of the consulting room or sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation and all else in the practice of medicine derives from it.
Sir James Calvert Spence (1892-1954)