When the gift can’t be received: The double loss of organ rejection

By Anne M. Windholz

He was thirteen. His black hair was tousled, his eyes brown with long lashes. He had shot himself. But only after it was hours too late did his dad ask about organ donation, reaching for something that might redeem unspeakable loss.

I was a rookie chaplain when I served this family. For many reasons, the case haunted me: The untold misery of a child who thought killing himself was the only solution. The agonized horror of his mother as she spoke of discovering him. The stiff faces and sad eyes of the medical team. The helpless father and that lost window of opportunity for some other child. And, of course, my worry that it was my fault the opportunity was lost.

In fact, the opportunity never existed — as I later learned, the boy had been down at home for some time before the parents found him. But nonetheless, when his father learned it was “too late,” his grief was doubled. For many people, donation salvages good out of catastrophe, at least a little bit. It offers the possibility of turning a tragedy toward a happier ending and promotes emotional catharsis. When that hope is dashed, the chaplain must be prepared to help survivors find meaning — personal, spiritual, theological — in a double loss.

Theological meaning-making has informed human transplant medicine for a long time. In 2008, the Journal of Healthcare Chaplaincy republished a 1993 issue devoted to organ donation and heart transplants. Among its many excellent articles, certain theological themes recur and continue to resonate almost thirty years later. Now an interreligious commitment adds to our understanding of how the relationship with God and neighbor is central to the decision to donate. Some key ideas include:

• Organ donation is excellent stewardship, even an act of co-creation with God¹;
• Saving another’s life through donation is an act of supreme generosity, exemplifying the Jewish ideal of Mitzvah;
• Giving one’s life for a friend is an exemplary form of love (John 15:13), and for Christians donation may be understood as a form of Eucharist²;
• Such altruism and relief of suffering exemplifies enlightenment in the Buddhist understanding of the term;
• Depending on circumstances, the ethical imperative to save a life calls for organ donation — a perspective inspiring to Muslims.

However, these religious themes also translate into a more secularized rhetoric where organ donation websites celebrate donors as “superheroes,” and emotional meetings between recipients and their donors or donor families go viral on social media. These are all vehicles for inspiration, catalysts for hope, and venues for creating “converts.” In the wasteland of disease and sudden death, they provide oases of meaning.

Such meaning-making is profoundly important. Certainly many families, medical staff, and chaplains find it comforting to know that another person’s life may be preserved, not just in spite of, but indeed because of, an otherwise senseless loss. I know this from personal experience. My brother-in-law died young, at age 47, of a massive heart attack. For years after his death, his wife attended celebrations honoring donors. His eyes became sight for someone blind; his skin became touch for someone injured. His (and his wife’s) individual choice became redeeming gift.

But how do we work with potential donor families who are told no donation is possible, or whose gift was rejected by the body of the recipient? Confidentiality laws mean that a donor may never know. In that respect, every donation is a leap of faith. But what do we do for the grieving when they discover their hopes of resurrection do not lead to renewed life but rather end in a second death — or no resuscitation at all?

Chaplains called to help families know that listening and presence are our primary interventions. Even at hospitals where I have been responsible for notifying Gift of Hope about a death, I have not been asked to broach donation with the family. That has been the job of donor organization professionals³. But when family members themselves ask chaplains about the possibility of donation (as with the 13-year-old suicide), our response must be nuanced and attentive to individual family dynamics. Unequivocal enthusiasm, replete with glowing theologies of participation in God’s life-saving work, may not be in the best interest of the survivors if donation might ultimately be denied.

In such situations, a gentle life review of the deceased patient’s broader legacy makes it possible to explore varied ways of giving, honoring, and paying it forward, while protecting loved ones from loading all their hopes in one basket. The body itself, while sacred because of the life it held and the love it gave, is by no means the only medium for making meaning. But in the immediacy of that beloved physical body being lost, we easily forget. The chaplain is perhaps the one member of the medical team who, in a time of crisis, can recall survivors to that broader picture: that people’s lives include their creations and causes, their relationships, their ideas and philosophies and passions.

Furthermore, the very stories that the bereaved tell about their loved one contain a vitality that can be life-giving. These stories, no less than a bone, a cornea, or a new liver, are gifts that can ease suffering, offer hope, reinvigorate or even save a life. Reframing organ, eye, or tissue donation as part of the legacy without forcing upon it the freight of ultimate meaning, protects against crushing disappointment while preserving the altruism and grace undergirding such an offering of love.

After all, is acceptance of a gift the only measure of its generosity? Is “success” the only measure of a gift’s meaning? Which is to say, is an organ donation that fails after three months any less of a gift than a transplant that adds fifteen years to a sick neighbor’s life? And is an Incarnation that ends in crucifixion powered by any less love than one that ends with a peaceful death on a soft pillow?

We are resurrection people. Life from death is who we are as chaplains — life that comes not from the physical body but from witnessing over and over again an immeasurable, unexpected, unreasonable love that gives when giving seems impossible. Love is the real donation, whatever the outcome. Love that does not mitigate grief, undo tragedy, or bring a 13-year-old boy back to life. Love that risks double the loss and more. But it endures. Because its story keeps being told, over and over and over again: A father offering his child to bring life to the world.

Listen for the story.

Anne M. Windholz, MDiv, PhD, BCC, is spiritual care leader/staff chaplain at Northwest Community Healthcare in Arlington Heights, Illinois. She is also a pianist who for the past 15 years has been able to play only because someone made a bone donation upon their death that repaired her cervical injury. Every day at the keyboard is a gift.