Am Fam Physician. 2000 Dec 1;62(11):2543-2545.
I have a patient in his 50s who is living with far-advanced lung cancer, and it is expected that his death will occur in the near future. He has been difficult to care for, in part because of a significant pain problem and in part because he often seems fearful and distressed. He is committed to a firm belief, based on his strong religious faith, that he will be healed. He refuses to discuss the possibility that he may die soon, and he also will not discuss his concerns for the future. His wife, although willing and eager to discuss practical and realistic issues about symptom management, in addition to other end-of-life concerns, supports her husband in his refusal to discuss anything negative. They have no extended family, and the patient and his wife have a limited circle of friends. To my knowledge, the patient has no close confidants, and I am the only person with whom the patient's wife has shared her concerns. It is my understanding that their minister shares the patient's strong belief in healing. In our small rural community, I do not have access to a social worker and, at this time, the patient refuses hospice care.
A problem has arisen relating to the patient's daughter. She is 18 years of age and lives on the other side of the country. As a teenager, she behaved in a way that made my patient very angry, and he is now estranged from his daughter. He is adamant about keeping the details of his illness from her and, again, his wife supports his position. It is clear to me that the patient loves his daughter and, furthermore, he has indicated that living with his illness has given him new insight into important aspects of his life. He plans to rebuild his relationship with his daughter “when he is stronger.” According to his wife, the daughter is also eager to resume contact. Is there anything I can do to bring about a reconciliation between the father and his daughter before it is too late? As a family physician, is it even my business to intervene? Or is it my obligation?
This case scenario clearly represents the challenges, complexities and paradoxes often faced by physicians working with dying patients and their families. Views and reactions regarding the end of life encompass a breadth of emotional, spiritual, personal and cultural factors that may take us far from standard medical practice. This case raises questions about whether a physician should encourage a family reconciliation and what the ethical considerations and limits of a physician's obligations are in such a situation. A secondary question concerns religious conviction in relation to truth telling.
In this case, I think encouraging reunification of the patient and his daughter is not overstepping the physician's obligations. Both father and daughter appear to desire reunification, and the estrangement in this family is likely to be a profound source of tension and even suffering. Treating suffering is well within the ethical domain of the physician-patient relationship. Encouraging reunification does not require breaking any confidentiality or trust between the physician and the patient or the family.
The tension between holding on and letting go is tremendous for a patient and their family when death looms, but it can be overwhelming for a family with deeply rooted, unresolved conflict. The possibility of the loss of a family member may open up painful, longstanding conflicts.1 The recognition and exploration of such conflicts is a critical step if patients and their families are to come to resolution or acceptance of an impending death. Furthermore, blame and guilt can seriously compromise the acceptance of death and greatly intensify or impair the bereavement process for surviving family members. In this case, the patient is likely to be at risk for a great deal of intrapsychic suffering as he faces the end of life. Moreover, the surviving family members are at high risk for a painful and complicated bereavement process. Because they seem to have no existing support system, supporting this family in an attempt at reunification is of even greater importance. Reunification should be encouraged in this situation, but it is important to consider how it can be encouraged within the ethical boundaries of the physician-patient relationship. Obviously, careful planning and assessment are required.
Patients and their families must be treated in the context of the world in which they live, and this involves a web of relationships.2 It is important that no one's welfare be ignored.3 While the daughter also seems to be interested in resuming contact, her wish is interpreted from the perspective of estranged and, perhaps, still angry parents. The daughter may have chosen a deliberate separation from her parents. For the physician to determine whether encouraging reunification or reconciliation is ethically appropriate, the daughter's unique experience within this family must be assessed, along with her reasons for the estrangement, her feelings about reuniting with her father and her sense of obligation regarding her father's care. We cannot be sure whether such a reunion would promote the daughter's emotional or psychological well-being until the context and experience of the daughter's perspective are adequately understood.
There appears to be a strong mutual desire for reunification independent of disclosing any medical information. Furthermore, the physician has grounds to believe that the patient loves his daughter and is becoming increasingly aware of the importance of their relationship. The father's wish to rebuild the relationship “when he is stronger” may be more related to pride, fear and hesitation than to denial. This area requires further attention and exploration. The relationship between the physician and the patient's wife appears to be solid, stable and therapeutic, despite the difficulty of the situation. Assuming the patient's wife is in contact with the daughter, it seems entirely reasonable to encourage the wife to let her daughter know about her father's interest in reunification. If necessary, the wife may disclose that her husband is ill without going into detail. If the daughter agrees to meet with her father, the physician may then ask the patient for permission to speak with her. The purpose of this discussion would be to allow the daughter to express her feelings about reunification, not to discuss her father's illness or diagnosis. Once such an understanding is secured from the daughter and her commitment to reconciliation is confirmed, reunification can be encouraged and planned. Handling this process gently and with compassion is the greatest challenge—and listening more than talking is the best course of action.
This patient shares a paradox with many people and families facing death: he is fearful and distressed, yet states a firm belief in cure and survival. This attitude may indicate that he harbors doubts and fears about his survival that conflict with his religious views that he is not yet able or ready to address. Illness as a test of faith can be demanding. For some people, the acceptance of impending death is equated with a failure of religious faith. I would strongly suggest that the physician ask the patient and his wife to include the minister in their next meeting to better understand their religious beliefs. Confidential information need not be disclosed. It is not uncommon for people to misinterpret religious doctrine in such trying circumstances. Meeting with a family's religious representative in end-of-life planning can be beneficial because it acknowledges the physician's recognition of the spiritual and personal aspects of the end of life. Furthermore, the minister may be helpful in encouraging and facilitating reunification with the daughter. Although some evangelical faiths hold strong beliefs in miracles and curing, most acknowledge a point at which the acceptance of God's will is embraced.
We are told that the patient shuns direct conversations about death, despite the fact that his fear and distress indicate awareness of his condition. A patient's refusal to openly discuss dying does not mean he is unaware of it. Many people believe that truth telling is an enormous emotional burden to put on themselves or a dying patient and that as long as they have not heard the “truth,” hope survives. Many patients and their families fall into a pattern of “the mutual secret”—an unexpressed arrangement in which the patient and family are aware of approaching death yet collude not to openly discuss it. With this patient, it is likely that profound family conflict is impeding the acknowledgment and acceptance of approaching death. When death is accepted, it forces an acknowledgment that the window of opportunity to resolve conflicts in relationships is rapidly closing. For deeply troubled people, this may lead to greater ambivalence.
Addressing the psychosocial aspects of this situation may be the best tactic the physician can apply in improving end-of-life care for the patient. It appears that this physician has already made progress by building a partnership with the patient and his wife. Supporting the family during such a difficult time and encouraging communication between family members is of tremendous therapeutic and ethical value. Doing so will assist the patient's acceptance of his illness and approaching death; in turn, familial and religious tensions and uncertainties are likely to be ameliorated, and pain control and long-term planning can be more realistically addressed.
1. Rosen EJ. Families facing death: family dynamics of terminal illness. Lexington, Mass.: Lexington Books, 1990.
2. Gilligan, C. In a different voice: psychological theory and women's development. Cambridge, Mass.: Harvard University Press, 1982.
3. Carse AL, Nelson HL. Rehabilitating care. Kennedy Inst Ethics J. 1996;6:19–35.
Please send scenarios to Caroline Wellbery, MD, at email@example.com. Materials are edited to retain confidentiality.
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