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Spirituality and Religion in the "Art of Dying"

From the Department of Gynecologic Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX.

Address reprint requests to Lois M. Ramondetta, MD, Department of Gynecologic Oncology, Unit 440, The University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030-4009; e-mail: lramonde{at}mdanderson.org.

ONCOLOGISTS, BECAUSE of the character of the diseases they treat, find themselves addressing end-of-life concerns with their patients more often than they might prefer. In gynecologic oncology, surgical care and medical care are frequently performed by a single oncologist. This individual may have a profound impact on his or her patients’ treatment plans, decisions to discontinue treatment, and the quality of life they can expect to enjoy at the end of their lives. Pursuant to this situation, it is worth asking whether oncologists’ personal attitudes toward death, as well as their relationships with their patients, influence the ways in which end-of-life discussions are managed? And, if this is true, do oncologists’ discomfort with death influence treatment decisions in patients who may be ready to discuss palliative care?

To lessen the possible influence of individual care givers, some have suggested the use of care pathways for managing patient care at the end of life.^1,2 Wanzer et al² have proposed that physicians develop and use end-of-life guidelines or pathways that "maximize comfort and dignity, relieve suffering and facilitate a peaceful death." Pathway programs, such as the one Wanzer et al advocate, can improve patient comfort, ensure ethics-based decision making, and perhaps ease a physician’s own anxiety in facing a patient’s death.

Developing end-of-life educational programs for physicians in training is a complex and difficult task. As our patient population grows increasingly diverse and as medical care continues to globalize, oncologists are often unfamiliar with individual patients’ religious, social, and ethnic traditions and concerns. Educational programs should accommodate the religious and ethnic diversity of patients and physicians. Such programs must address other issues as well. Today, patients are more closely involved in decisions concerning their treatment; and, as medical malpractice and informed consent issues become more complicated, physicians will need to recognize the way people of different ethnicities and religions understand information relating to their care and prognosis.

Recently, 328 gynecologic oncologists responded to a survey about the factors that influence their discussions with gynecologic cancer patients who have limited treatment options and will soon die (unpublished data). We learned that physicians who said they knew their patients well were more at ease discussing end-of-life questions than were physicians who said they did not know their patients well. Other issues that shaped the clinicians’ attitudes toward end-of-life discussions with their patients included the age of the patient (10%) and conflict between a patient’s advance directives and a physician’s assessment of the situation (8%). Whereas 52% of the responding physicians reported that it was difficult for them to tell a patient she would soon die or that her cancer had recurred, 94% were at ease with the decision to withdraw anticancer treatment if the decision reflected the patient’s readiness to face death. Most importantly, we found that a physician’s personal discomfort with issues of dying and cancer recurrence reflected, at least in part, his or her own religious beliefs (P = .005 and P = .008, respectively; Ramondetta et al, unpublished data).

The gynecologic oncologists who responded to our survey were mostly Christians (76%), whereas Jews, Muslims, Hindus, and those classifying themselves as "other" constituted the remaining 24% of respondents. The results indicated that Christian respondents did not have as much difficulty talking about death with their patients as did physicians of other religions. The fear of one’s own death among the surveyed physicians was also associated with their religious affiliation (P = .011), with those who identified themselves as Christians reporting the lowest level of fear. This may be a result of other aspects of social culture aside from Christian religious beliefs. Interestingly, neither sex nor years in practice influenced either the difficulty or the ease with which physicians addressed end-of-life issues. Fortunately, physicians who reported a personal fear of death were not more likely to perform futile treatments.

Our survey also found that only 38% of responding oncologists had any formal training in responding to the ethical issues that arise at the end of life. Moreover, only 45% believed that their residency and fellowship training in oncology prepared them to relate to terminally ill patients. Fifty-five percent of oncologists reported that their medical training had not assisted them with interactions with the families of dying patients, and an overwhelming 77% believed that it would be helpful to participate in educational workshops and taped mock sessions with actors depicting terminally ill patients during fellowship or residency programs. Fifty-seven percent of respondents believed care pathways designed for addressing needs at the end of life would be beneficial.

Although our study focused on personal traits and beliefs of physicians, previous studies have shown the importance of religion in the lives of our patients.^3,4 In one study, 76% of gynecologic cancer patients reported that religion had a serious place in their lives, and 49% of patients believed that they had become more religiously observant since their diagnosis, whereas no patient reported a diminishment in her religious beliefs.⁴ A significant 93% of patients reported that their religious commitment had helped sustain their hopes during treatment. A recent article published in the Journal of Clinical Oncology illustrated that faith was the second most important factor (the opinion of their oncologist being the most important factor) that patients used to make oncologic decisions.⁵ According to Roberts et al,⁴ women with gynecologic cancer "depend on their religious convictions and experiences as they cope with the disease." These authors argue, and we agree, that discussing a patient’s religious concerns does not constitute an endorsement of their religious beliefs. Instead, such a discussion represents recognition of the patient as a moral and spiritual human being.

There is also evidence to suggest that overall interest in spirituality, as measured by transpersonal development inventories, is inversely correlated with the level of a patient’s psychosocial distress.⁶ Smith et al⁷ have argued that "a redefinition of one’s attitude toward death may be necessary to formulate a personal perspective on death that comforts rather than threatens." Thus, "the more the patient was able to normalize death and view it as a natural process and a part of the life cycle, the less psychosocial distress he or she experienced."⁷ Extending this analysis, we can suggest that the more the physician is able to normalize death, the less personal distress he or she might experience and possibly transfer to the patient who is dying. It is unclear whether this ability accounts for the differences in acceptance of death among physicians of different religions.

The responses to our survey (Ramondetta et al, unpublished data) suggest that discussions about the end-of-life religious issues require that both patients and physicians be candid, at least with themselves, about their attitudes towards the inevitability of death and the finality of human experience. It is not essential that a physician endorse a patient’s beliefs nor is it necessary for a physician to share his or her religious beliefs with a patient. However, what is crucial, to what Outerbridge and Hersch⁸ have described as "easing the passage," is a recognition that both patients and doctors share a common humanity and that, sooner or later, both will have the common human experience of dying.

Our survey indicates that gynecologic oncologists need help in readying themselves to treat terminally ill patients. An essential component of an end-of-life educational program would be a discussion of the importance of religion and spirituality in the lives of patients and of physicians themselves. Specifically, it seems important to train physicians to prepare patients for death and to make critical decisions throughout the treatment process.

To simply introduce physicians to what James⁹ described as "the varieties of the religious experience" or to design a program that surveys the world’s religious traditions, misses the point. The finite character of human life, the fact that no one gets out of here alive, is reflected in the centrality of death and, what the Dalai Lama terms, "the art of dying" in virtually all religions. Furthermore, virtually all religions have beliefs about what happens to their members after they die. Christians may travel to Heaven, Muslims to Paradise, and members of some forms of Buddhism to "the Pure Land in the West." Many religious traditions also specify very particularly how the dead are to be handled, such as immediate burial for Jews, cremation for Hindus, and for the ancient Zoroastrians, exposure to the elements and the birds of the sky.

However, most religions are less prescriptive when it comes to the dying who have been thoroughly medicalized. This is where physicians, their patients, and the patients’ families have difficulty synthesizing religious reflection and medical practice. In the medical literature, what passes for issues relating to a patient’s spiritual disposition at the end of life are really questions about the quality of the communication between physicians and dying patients. Dying patients, by and large, do not ask their doctors where they are going after their bodies give out on them, this being considered to be the job of chaplains. What patients tell their physicians is some version of "I’m afraid to die" and "I don’t want to hurt on my way out." When patients speak these words or express these fears through their behavior, they are expressing a crisis that Bynum¹⁰ would call "meaning." What does my dying mean to me, to my family, and, not incidentally, to my doctor? Not surprisingly, patients and physicians who imagine death as part of life’s journey have an easier time than do those who think death is an avoidable catastrophe. On this topic, Mitford’s book¹¹ entitled The American Way of Death may be just as helpful to physicians as anything Kubler-Ross¹² has written on death and dying.

All cancer patients know that the disease sometimes wins. What a patient wants from her physician is an assurance that he or she will stand with her in this confrontation with the absolute assurance her physician will not abandon her and not be indifferent to the outcome. Ultimately, it is not answers to religious questions that patients want from their doctors but recognition of what Gunn¹³ has called the transcultural character of the human experience, which takes us beyond solidarity and enables us to see ourselves in the suffering of others.

In analyzing the responses to our survey, we have concluded that physicians, who are accustomed to solving medical problems, may find it helpful to be trained in the "art of dying" to remind themselves of the limitations within which they work. Death is a natural part of the life cycle, and, like their patients, physicians too must come to terms with the finite character of all human experience. Perhaps this was best stated by Astrow et al,¹⁴ "If to care for a person, one must first learn to be a person, physicians may wish to cultivate and deepen their own spiritual lives."

AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

The authors indicated no potential conflicts of interest.

REFERENCES

1. Benrubi GI: The gynecologic oncologists and futile therapy in a managed care setting. Curr Womens Health Rep 2:159–162, 2002[Medline]

2. Wanzer SH, Federman DD, Adelstein SJ, et al: The physician’s responsibility toward hopelessly ill patients: A second look. N Engl J Med 320:844–849, 1989[Abstract]

3. Gioiella ME, Berkman B, Robinson M: Spirituality and quality of life in gynecologic oncology patients. Cancer Practice 6:333–338, 1998[CrossRef][Medline]

4. Roberts JA, Brown D, Elkins T, et al: Factors influencing views of patients with gynecologic cancer about end-of-life decisions. Am J Obstet Gynecol 176:166–172, 1997[CrossRef][Medline]

5. Gerard A, Knittig S, Zoller JS, et al: Importance of faith on medical decisions regarding cancer care. J Clin Oncol 21:1379–1382, 2003[Abstract/Free Full Text]

6. McCarthy EP, Phillips RS, Zhong Z, et al: Dying with cancer: Patient’s function, symptoms, and care preferences as death approaches. J Am Geriat Soc 48:S110–S121, 2000[Medline]

7. Smith E, Stefanek M, Joseph M, et al: Spiritual awareness, personal perspective on death, and psychosocial distress among cancer patients: An initial investigation. J Psychosocial Oncol 11:89–103, 1993

8. Outerbridge DE, Hersch AR: Easing the Passage: A Guide for Prearranging and Ensuring a Pain Free and Tranquil Death Via a Living Will—Personal Medical Mandate and Other Medical Procedures (ed 1). San Francisco, CA, Harper Collins, 1991

9. James W: The Varieties of the Religious Experience. New York, NY, Touchstone Books, 1997, pp 39–59

10. Bynum CW: Fragmentation and Redemption: Essays on Gender and the Human Body in Medieval Religion. New York, NY, Zone Books, 1996, pp 239–298

11. Mitford J: The American Way of Death. New York, NY, Vintage Books, 2000

12. Kubler-Ross E: On Death and Dying. New York, NY, Scribner, 1997

13. Gunn G: Beyond Solidarity: Pragmatism and Difference in a Globalized World. Chicago. Chicago, IL, University of Chicago Press, 2001

14. Astrow AB, Puchalski CM, Sulmasy DP: Religion, spirituality, and health care: Social, ethical and practical considerations. Am J Med 110:283–287, 2001[CrossRef][Medline]

Submitted January 17, 2003; accepted September 17, 2003.

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