In Sickness and in Health: Testing the Vow after Transplantation

Abstract

Journal of Transplant Coordination, Vol. 8, Number 4, December 1998 T presents many challenges to patients, families, and the healthcare providers who attempt to manage the predicted and many unpredicted events that follow. Each of us knows the struggles that patients and their families often confront while awaiting transplantation, as well as the hope they have that the new organ will solve the problems they have experienced. When facing death, most patients and their families focus only on the outcome of the immediate crisis. They simply want to be assured of a longer life. A new organ often represents the only solution to the immediate problem. In an article that may be considered a classic, “Family Adjustment to Heart Transplantation: Redesigning the Dream,” Mishel and Murdaugh1 reported that families expect life to return to normal once their loved ones receive a new heart. Although life may have been extended in the months following transplantation, coping with stressors such as rejections, infections, frequent visits to the transplant center, and financial issues often complicates the reality. Perhaps technology is more advanced than our psychological coping abilities. Often, the integrity of the family unit is stressed to the point of instability when finances and health are at stake. We take a marriage vow that says “in sickness and in health, for richer and for poorer.” But more than often, for spouses these problems linger without intervention. If we could be more proactive in caring for the family, perhaps some of these stressors could be avoided. Research on caregiver burden was reported in a recent issue of the Journal of Transplant Coordination, and I encourage you to read it.2 Many self-help support groups have formed on the Internet for those coping with chronic illness, especially for families coping with cancer, lupus, and multiple sclerosis. One such group founded by family members of patients with multiple sclerosis aptly calls itself the Well Spouse Foundation. There seems to be a void for professional interventions with families of transplant recipients. In procurement, our colleagues have developed bereavement counseling and support groups for donor families. However, in the clinical world, we could do still more for families following transplantation. It is important for families and patients to begin learning about the realities of transplantation in the candidate stage. Transplantation should not be presented as a cure but as an adjustment to a new lifestyle. Ongoing education for patients and families should be part of every transplant center’s program. In keeping with the multidisciplinary approach to transplantation, social workers, nurses, pharmacists, physicians, psychologists, clergy, and financial coordinators all should be invited to participate in these programs on a regular basis. Two of probably the most effective support group sessions that I have observed consisted of a panel of transplant recipients discussing their realities, followed by a panel of spouses and significant others presenting their perspectives on living with transplant recipients. In each of these sessions, a clinical transplant coordinator and a social worker were present to facilitate the lively discussions. Spouses and family members need attention individually and as a group. After reading more about caregiver burden, I would like to challenge each transplant center and clinical transplant coordinator to develop a spousal support group. The research potentials are many, and the benefits to families and our patients promise to be very rewarding. Case studies, letters to the editor, and research findings on this topic are welcome. Share your knowledge and experience.