Family Practice O Oxford University Press 1992

Vol. 9. No. 4 Printed in Groat Britain

The Family Physician's Role in Caring for the Dying Patient and Family: A Comprehensive Theoretical Model DOV STEINMETZ-f AND LAWRENCE L G A B E L "

INTRODUCTION Dying in dignity is the common wish expressed by most dying patients and their families and the desirable outcome of good, comprehensive care. There is general aggreement that care for the dying is a difficult task. Rakel in his textbook of family practice wrote: "It is not surprising for an empathetic family physician who has enjoyed a long and close relationship with a patient to be uncomfortable in dealing with the patient's impending death".1 Many factors seemingly contribute to the difficulty. Western society is a 'death denying' society.2'3 Westerners have difficulty in accepting dying and death as a natural end to life. Death that occurs at a developmental stage in the family life cycle other than in old age as a natural termination of life, usually leads to severe stress and may create an overt crisis.4'3 Physicians fear death; physicians have the same, or according to some authors, an even higher-thanaverage fear of their own death.6-7 The confrontation

with the dying patient may evoke overwhelming emotions which can create a barrier to appropriate care. Practical issues such as symptom control and the correct management of the illness can be problematic at times. Studies done in England and the US by Durand et al.,s Bleyth9 and Railey and Patten,10 show that physicians are not satisfied with the way they treat dying patients' symptoms. Many physicians point to the difficulty of making a balanced evalution of their patients' physical and emotional state, and in communicating with the patient. Profound legal and ethical issues are involved. The dilemma over prolonging life vis-a-vis prolonging death is very relevant and adds to the difficulty. Wonderful new medications, modes of treatment and mechanical means improve and even cure some malignant and other diseases. Undoubtedly, modern technology is able to prolong life, but unfortunately in many cases, the quality of the additional life may not justify it."'12 The physician has to make the decision as to when to terminate the cure orientation and begin the care orientation. Questions of euthanasia and all forms of 'aid in dying' need to be addressed. These issues are under professional and public debate. Wanzer et al. wrote that ail but two (10 out of 12) of the participants at a meeting held in Boston in 1987 believe that it is not

• Department of Family Medicine, Haemek District, Afula, Israel, •• Department of Family Medicine at The Ohio State University, Columbus, OH, USA. t Address for correspondence: PO Box 70. Givat-Elah 10503, Israel. This paper was presented as a poster in the 13th 'WONCA' World Conference on Family Medicine, Vancouver, Canada, May, 1992.

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Steinmetz D and Gabel LL. The family physician's role in caring for the dying patient and family: a comprehensive theoretical model. Family Practice 1992; 9: 433-436. Care for the dying patient is a difficult task which arouses many emotions in all participants. Many physicians feel inadequately prepared to cope with the many diverse challenges. A three-dimensional model is described which intends to help physicians better define their role in caring for dying patients. The model comprises direct involvement with the dying patients and their families, the physician's own needs and personal development and the co-operation with other care-givers. This model can be implemented at three levels, according to the physician's experience, skills, feelings, and the situation. The model can serve as a basis for extensive research and as a foundation for curricular innovation for students, residents and continuing medical education.

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as conceptual literature. Of the few physicians who have published, writings are mainly by psychiatrists who deal with the mental aspects of death and dying2'6'17'18 and other sub-specialist physicians who deal with symptom control, pain alleviation, and the hospice movement.12"-24 Research and writings by family physicians are relatively rare. Hence, we propose a comprehensive theoretical model as a basis for extensive research, curricular innovation and practicality to help family physicians define their role in the care of dying patients and their families. THE MODEL The model (Figure 1) is three dimensional. The first dimension represents the direct involvement of the physician with the dying patient. The second dimension deals with the physician's own needs and difficulties along with his/her personal development and the third dimension reflects co-operation with other care-givers. Each dimension consists of several factors as expanded upon below. The First Dimension—Direct Involvement with the Patient and Family 1. Doctor-patient relations. The basic and most important single component for care is establishing a Dimension III: Cooperation with Other Caregivers

Dimension I: Direct Involvement With Patient

FIGURE 1 The family physician's role in caring for the dying patient and family: a comprehensive theoretical model.

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immoral for a physician to assist in the rational suicide of a terminally ill patient.13 In The Netherlands, euthanasia has been at the centre of public debate since the early 1970s. Van Der Maas et a/.14 presented the first results of a Dutch nationwide study on euthanasia and other medical decisions concerning the end of life (MDEL). They reported that euthanasia by administering lethal drugs had been performed in 1.8% of all deaths. MDEL were taken in 38% of all deaths, and in 54% of all nonacute deaths. They concluded that these decisions are common medical practice. Cassidy, a medical ethicist, at the 1991 American Academy of Family Physicians Annual Meeting suggested that physicians caring for terminally ill patients in intractable pain have an ethical right to help them commit suicide if that is the patient's wish.13 On the other hand, a report by the American Medical Association's Council on Ethical and Judicial Affairs, dated June, 1991, concludes that doctors must not perform euthanasia or assist suicide. The report points, however, to the need for a more careful examination of the issues of euthanasia and assisted suicide.16 Most literature about the various aspects of death and dying is written by non-physicians, mostly by behavioural professionals. Much of it can be described

CARE FOR THE DYING PATIENT AND FAMILY good, open, honest and respectful relationship with the patient and his/her family. The relationship and the communication skills that the physician uses are the link between all the issues and categories of which the diversity of care consists. 2. The family. Although dying is a family affair, the members do not always comfortably support one another. The physician has to be able to make a balanced family assessment and sometimes even intervention. Even in those families whose members can effectively support and care for each other, the more the physician understands the family's dynamics the better (s)he is equipped to help the family survive the impending loss.5

4. Death education. By using death education material, such as the five stages that terminally ill patients go through from diagnosis, or awareness of their illness, to the acceptance of the fact that they are dying,2 the physician can help the patient and family understand what is being experienced. This will clear the atmosphere at home and help in matching expectations. Understanding the dying patient's behaviour and accepting it will liberate the family from their feelings of guilt and enable them to complete a normal bereavement process. Discussing 'living will' and 'do not resuscitate' (DNR) orders with the patient and the family can add credit to and deepen the doctor-patient relationship. 5. Ethical and legal issues. Facing these issues and discussing them with dying patients is unavoidable. The 'grey area' is wide but guidelines and directions do exist that can help physicians find their own way according to their deep faith and belief.l3>25>26 Physicians' difficulties in dealing with these delicate subjects should not be the reason for ignoring or blocking out the patient's needs. The physician can share his/her difficulties with the patient and mutually find the best way to overcome them. 6. Symptom relief. The most obvious role of family physicians is to alleviate the dying patient's pain and to ease physical suffering and symptoms. Careful medical history-taking and a good physical examination will bring the caring physician to the understanding of the nature of his/her patient's suffering. Dealing with the patient's fears, concerns and anxieties, and with the family's stress is the best ingredient for symptom relief. Broad pharmacological knowledge together with stress-education methods (can be as simple as assurance that the physician will be available when

needed and that pain can be effectively alleviated) are necessary to complete this task. The Second Dimension—Physician's Own Needs and Development Physicians who are uncomfortable with the many emotions that death and dying evoke can be very discouraging to the dying patient and their families. Awareness of his/her own feelings in relation to the subject of death and dying and awareness of the feelings that dying patients arouse in him/her is a significant step in a physician's personal development toward comfortably caring for his/her patients. Facing the complexity of emotions and practical difficulties, physicians may feel a heavy burden that the care for the dying patient puts upon their shoulders. In this case, a support system is needed. A close friend, colleague, supervisor or a support group (e.g. Balint group) can fulfil this role. Continuing medical education (CME) covering the area of death education can be very helpful. All these experiences will bring the physician to a higher personal developmental level and help him/her deal with and care for dying patients more comfortably and confidently. The Third Dimension—Co-operation with Other Care-givers As care for the dying patient and family is team work, physicians find themselves bonded to other caregivers. The family physician's role is central as (s)he becomes the advocate for the patient and family. The physician should be familiar with the community facuities, and help the patient and family find their way through other specialists, hospital facilities, hospice, volunteers and special programmes that can be found within the community. The family physician can be the one who co-ordinates the care programme among all care-givers or be the main source to provide physical, emotional and social comfort. Care for the dying patient is one of the most rewarding aspects of family medicine if properly done. By doing so, the family physician is in a role of educator to all the other care-givers and can be a role model to medical students, residents and colleagues. Levels of Involvement Three levels of involvement are suggested. The basic level—in which the physician keeps an open and honest rapport with the patient—offers symptomatic relief and serves as an information source to the family. The intermediate level—where, besides the basic level activities, the physician involves the family more actively in the care programme—provides coordination among other care-givers and confronts his/her own feelings. The more advanced level—requires family assessment and intervention if possible (or referral to other professionals, e.g. family therapist)—allows for open discussion about ethical and legal issues such as suicide and euthanasia and

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3. Grief and bereavement. The family physician's role does not end when death occurs. The family members usually are in a sensitive, emotional and physical condition during and after the dying and death of their loved one. Therefore, the physician's role is to support and meet the family members' needs during this difficult phase of their life.

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provides an opportunity to share feelings with the patient and the family. For different family physicians, these levels of involvement will be variable. Each physician will find his/her own way of care, according to his/her skills, experience, feelings and the specific situation.

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REFERENCES

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Rakel RE, Storey P. Care for the dying patient. In: Rakel RE (ed.), Textbook of family practice, 4th edn, WB Saunders, 1990, pp. 181-197. 2 Kubler-Ross E. On death and dying. New York: Macmillan Publishing Co. Inc., 1969. 3 Aries P. Western attitudes toward death: From the middle ages to the present. Baltimore: Johns Hopkins, 1974. * Carter B, McGoldrick M. The changing family life cycle: a framework for family therapy. New York: Garner Press, 1988. 3 Rosen EJ. Families facing death. Lexington, MA, Toronto: Lexington Books, DC, Heath and Company: 1990. 6 Feldman A. The dying patient. Psychiatr Clin North Am 1987; 10: 101-108.

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Saunders C. The moment of truth: care of the dying person. In: Pearson L (ed.) Death and dying. The Press o f Case Western Reserve University, 1969. Rees W D . Role of the hospice in the care of the dying. Br MedJ 1982; 285: 1766-1768. Gonda T A , Ruark JE. Dying dignified. The health professional's guide to care. Addison-Wesley Publishing Company, 1984. The International Work Group on Death, Dying, and Bereavement. Assumptions and principles underlying standards for terminal care. Nursing Times 1979; 75:

69-70. Singer PA, Siegler M. Euthanasia—a critique. N Engl J Med 1990;322: 1881-1883.

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SUMMARY AND PRACTICAL IMPLICATIONS A model to help family physicians define their role in care for dying patients and their families is offered. It is comprehensive suggesting the scope of care and the diversity of issues involved. It is unique not only for its comprehensiveness but also for the emphasis it puts on the physician's feelings and behaviour. The model with its three levels of involvement is recommended as a framework for curricular innovation. The basic level can serve as a goal to be achieved with medical students. The intermediate level suits family medicine residents in their first few years in residency. The advanced level, with its comprehensiveness, can be the content of curricular formation for advanced resident and continuing medical education for practising physicians. Given the model, research done can be unidimensional or multidimensional. Within a given dimension, research can be multifactorial. No matter the approach, findings will have ready application for the patient, the family and the family physician.

Kane AC, Hogan JD. Death anxiety in physicians: defensive style, medical specialty and exposure to death. Omega, 1985; 16: 11-21. Durand D P , Dickinson GE, Sumner E, Lancaster CJ. Family physicians' attitudes toward death and the terminally-ill patient. Fam Pract Res J 1990, 9: 123129. Blyth AC: Audit of terminal care in general practice. Br MedJ 1990:300:983-986. Reilly PM, Patten MP. Terminal care in the home. J R Coll Gen Pract 1981; 321: 531-537. Lamerton R. Care of the dying. Harmondsworth, Middlesex: Penguin Books Ltd, 1980. Kubler-Ross E. Death—the terminal stage of growth. Prentice Hall, Inc., 1975. Wanzer SH, Federman DD, Adelstein SJ, et al. The physician's responsibility toward hopelessly ill patients. NEnglJMed 1989; 320: 844-849. Van Der Maas PJ, Van Delden JJM, Pijnenborg L, Looman CWN. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. Ethicist: Helping terminally ill commit suicide can be acceptable. Am Med News 1991; 34: 6. Editorial: Let's keep death decisions private. Am Med News 1991; 34: 17. Weisman AD. On dying and denying. New York: Behavioral Publications, Inc., 1972. Feifel H. Attitudes toward death: a psychological perspective. J Consult Clin Psychol 1969; 33: 292-295. Twycross RG, Lack SA. Symptom control for advanced cancer: pain relief. London: Pitman, 1983. Twycross RG. The management of terminal disease. Saunders, Chicago, IL: Edward Arnold Publications, 1978. Benton RG. Death and dying. Principles and practices in patient care. Van Nostrand Reinhold Company, 1978.

The family physician's role in caring for the dying patient and family: a comprehensive theoretical model.

Care for the dying patient is a difficult task which arouses many emotions in all participants. Many physicians feel inadequately prepared to cope wit...
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