Few medical interventions have captured the moral imagination of Western societies as solid organ transplantations have. The image verges on the miraculous as lives are improved and extended. But transplant medicine casts a shadow that pastors encounter when parishioners become patients.
Public and private efforts promote “organ donor awareness” for the potential benefit of some 80,000 patients languishing on national waiting lists. Feature stories in periodicals and on television depict transplantation at its best. Thousands in end-stage organ failure benefit annually, and their heart-wrenching stories are reported or dramatized in hope that tens of thousands might also.
“Last minute organ donation seen as ‘miraculous event’,” reads one typical headline. In yet another, donation is termed “The Greatest Gift of All.” Readers learn how they may donate a spare kidney, “the gift of life,” even to a complete stranger.
So where is the “shadow” of such miracle medicine? Is this not exactly what our religions commend?
A 60-year-old building contractor returns to church having had “a change of heart”—both physically and spiritually—on New Year’s Day 1984. Nearly 20 years later, he still helps his sons with the family business.
A 25-year-old, diabetic and blind, receives her donor kidney from a stranger in May 1985, and her seminary degree in May 2001.
Surely this is the stuff of miracles and meritorious acts! But of course, not every case ends so well. Not every transplant patient makes a good poster child.
What usually gets left out of transplant success stories? Not just the inevitable medical failures, but also the traumatic, ethically complex dimensions of even those majority cases with mostly good outcomes.
First, the waiting period. This traumatic dimension of transplantation is only partially obscured by promoters. Growing ranks of wait-listed patients, and especially the sad accounts of those who die waiting, serve to motivate potential donors to “give the gift of life.” Yet pastoral caregivers will encounter the shadow here: the tedium of seemingly interminable hospital stays, roller-coaster emotions, excitement and let-down of false alarms, hope and despair.
Pastors, and patients themselves, may be horrified by the subtle shift in one’s usual response to the sound of sirens. Family and friends, or a speeding biker on a “donorcycle”, begin to look less like whole people and more like potential donors of coveted body parts.
“Designated requesters,” trained by organ procurement organizations, approach the next of kin in most hospitals when a patient is declared “brain dead.” Despite sincere efforts by requesters to be compassionate, they are often designated “vultures” by other hospital staff. The questions asked of grieving families can either help make meaning of a loved one’s death or further traumatize the bereft.
The vast majority of transplanted kidneys work well and long in recipients. “Graft” and patient survival statistics (updated regularly and available at www.unos.org) are somewhat less optimistic for heart and liver recipients—significantly less so for donor lungs. In any case, “replacement therapy” is not so analogous to auto mechanics as often portrayed. Donor body parts do not make one “as good as new.” Getting a new or used heart is not like replacing a carburetor.
The body’s natural defense mechanism against invading organisms produces an immune response to a foreign organ also. It attacks. Thwarting graft rejection requires complex daily regimens of immune suppression medications, at costs exceeding $10,000 annually. The financial impact on families can be staggering, first on account of “the wait,” then expensive surgery and ultimately a lifetime of follow-up treatments.
Eventually all of us die, but transplant patients typically die sooner. The miracle lasts only so long. Sometimes there is no miracle at all. Then pastors attend to the patient who dies waiting, or from surgical complications, or from post-operative graft rejection disease. We do not like to think, much less speak or write, of transplantation’s shadow. Yet it exists.
Hospice reintroduced the “good death” and how it might be obtained despite our high-tech hospital ways. But for those who die waiting for the miracle that never comes, even a good death is hard to come by. How do you consent to the inevitable or say your goodbyes while retaining hope for that last-minute miracle? Too often one does not die well while waiting for transplant, and pastoral care is further complicated and compromised.
Organ transplant medicine has both extended and improved the lives of many who would otherwise suffer too much and die too soon. It is an almost miraculous intervention of human ingenuity and compassion. Yet dimensions of transplantation do not fit the miracle image at all. These beg the attention of, at least, those who would provide pastoral care.
We must step into the shadow, for many patients and families—outside of the public relations spotlight—are suffering and waiting for us there.
Tarris D. Rosell is associate professor of pastoral care and practice of ministry at Central Baptist Theological Seminary in Kansas City, Kan.
Tarris Rosell is professor of pastoral theology–ethics and ministry praxis at Central Baptist Theological Seminary in Shawnee, Kansas, and holds the Rosemary Flanigan Chair at the Center for Practical Bioethics.