Bonnie Lamey is emotional but composed as she relates the details of her bittersweet story. Behind her, on the wall of her Cape Breton home, is a photograph of her son Donald. The freckle-faced youth looks down from the picture with the mischievous eyes of the 16-year-old he was. Donald died on Valentine’s Day, 1997. He was on a school ski trip when a trivial-seeming spill sent him sliding into a tree. The impact broke his nose and drove a bone fragment into his brain. He never regained consciousness.
That’s the unimaginably bitter part of Lamey’s story. The sweet part is this: those mischievous eyes live on, she feels.
The circumstances of his death made Donald one of the fewer than two percent of deceased Canadians who are candidates for organ donation, and the transplant unit of the hospital accordingly visited Lamey in the hospital waiting room. Lamey remembers the dreadful question no parent wants to hear: “Would you like to be an organ donor?”
Church members who may find themselves faced with this question, or who may have responded to Moderator Rt. Rev. David Giuliano’s invitation last year to “consider obtaining and completing a donor card” might want to consider how this simple question can provoke many more. The nexus of human organ donation is a maze of complex issues.
“The first question inevitably raised by the prospect of organ donation is what do we mean by death?” says Paul Flaman, who is a bioethicist, an associate professor of Christian theology at St. Joseph’s College at the University of Alberta, and the author of Organ and Tissue Transplants: Some Ethical Issues. “The generally accepted medical definition of death is ‘total irreversible brain death,’ but as we know,” he says, referring to the Terri Schiavo controversy of 2005, “this definition has been famously challenged in recent years. Some are arguing that even if the brain is dead, the person is not dead until the circulation of the blood has ceased,” says Flaman. “I don’t agree with this.”
Reeling from the shock of her loss, Lamey at first balked at the request for Donald’s organs. “I demanded evidence he wouldn’t come back,” she says. Whatever definition of death the doctors presented, Lamey needed to rely on her own instincts. “I stood over his bed for 13 hours straight until his lungs begin to clog up. Then I made my decision,” she recalls. “Within two minutes, they were wheeling him down the hall.”
Lamey made her son’s corneas available to give the gift of sight to a stranger in need. Donald’s lungs still breathe, though in another body. His heart still beats, Lamey believes, in a man in Newfoundland, the father of two children. Donald’s kidneys went to two patients on dialysis. His bone marrow and skin were taken to help cancer patients and burn victims. His liver went to a young woman in her 30s who was, so Lamey has been told, just weeks away from death herself.
Intellectually, Lamey’s choice had been clear. She herself has signed a form consenting to donate her own organs in the event of a catastrophe. She and Donald had talked about organ donation. “I told Donald his grandfather died because he couldn’t get organs,” Lamey remembers. “I said, ‘If some accident happens, do you want to be an organ donor?’ And he said, ‘Yes.’” Emotionally, however, it was another matter. When the time came to consign her son’s body to the mercies of the transplant surgeons, Lamey’s head and heart were in conflict.
Consider the word “heart” in that last sentence. How much more it connotes than the 300 grams of insensate, involuntary muscle that science says it is. “One issue people often have is with signing over a loved one’s heart and eyes. The kidney or the liver, they don’t think about it so much,” says Scott Gordon. Gordon is a donor co-ordinator with HOPE, the Human Organ Procurement and Exchange program at the University of Alberta Hospital. When families of dying or deceased patients indicate to the hospital’s medical team their willingness to donate organs, Gordon listens to their concerns, answers their questions and ensures that their consent is fully informed. “The idea that their loved one lives on in another person is the principal reason families give for wanting to donate organs,” says Gordon. The program dealt with 36 donor families last year. People almost universally attach meaning to body parts, Gordon adds. “The eyes are the window to the soul, as they say, and the heart is associated with love and feelings. So if you are asking someone to donate their loved one’s heart, it can be a difficult thing for them.”
We closely identify our physical form with who we are in essence: mentally, psychologically, socially and also spiritually, says bioethicist Flaman. “In Christian custom, the integrity of the physical remains of a deceased person are honoured, respected.” The Judeo-Christian perspective “affirms the dignity of each human person created in the image of God,” he says. “The various aspects, parts and functions of a human participate in this dignity. As St. Paul said in 1 Corinthians: ‘Your body is a temple of the Holy Spirit.’” For a Christian, therefore, the decision to dismantle the cherished “temple” of a loved one and portion it out to others presents a unique set of challenges. In Lamey’s case, she struck a compromise in dealing with this dilemma, forbidding the transplant team from taking anything that would alter her son’s appearance.
Questions about body and soul, or material being and spiritual essence, don’t reside only on the donor side of the transaction. The recipient of a vital organ lives with the knowledge that he or she in some sense embodies another person.
Even non-vital body parts can carry this freight. Flaman mentions an instance of an accident victim who lost a hand and was supplied with another from a cadaver. “The recipient didn’t want it after a while,” he reports. “It wasn’t ‘them.’” He points also to the French burn victim who, in 2005, received a face transplant. Says Flaman, “She’ll have the features of another person as she goes through life, which will certainly raise profound identity issues.”
Advances in medical technology may even make a human head transplant (perhaps better referred to as a body transplant) possible some day. “The recipient in this case, though, would resemble a quadriplegic because it would be impossible to connect the 100 to 200 trillion nerve endings,” says Flaman, quoting research by American surgeon Dr. Robert White, who has performed such transplants on monkeys. Who are you, Flaman asks, when the greatest part of you is not you?
Jim Byer of Williams Lake, B.C., is one organ recipient who doesn’t dwell on whether he is embodying another person. Byer turned 65 last October. It was a birthday he didn’t expect to celebrate. Byer was diagnosed with pulmonary fibrosis, a degenerative disease of the lungs. He needed a lung transplant, and in May 2004, he went on the waiting list. “They prepare you for a 12- to 24-month wait,” he says. “My pager went off just two months later, and I received a lung on July 4, 2004. I was very blessed.”
A “moderately religious” man, Byer does not believe there is a connection between body and soul, and doesn’t think he inherited a bit of the donor’s spirit along with his lung. “I’ve heard people say that. I’m sure my wife would tell you I did,” he laughs. But that’s because his own spirit matured with the experience, he explains, not because he incorporated another spirit. “I live my life differently. I don’t worry so much about the material things. I have a lot of gratitude in my life now,” he says.
Byer has become something of a crusader for organ donation, encouraging others to sign donation cards. By all accounts, he’s a well-liked, thoroughly decent man. But what if he wasn’t? The “worthiness” of those who receive their loved one’s vital organs is a concern that donor co-ordinator Gordon often has to address when counselling donor families. It’s a natural enough concern, perhaps, but a mare’s nest of complex ethical issues, says Flaman. “In the allocation of a limited resource, who makes the decision? What criteria do they use? Are the criteria fair, and is the right person making the decision?” he asks.
Dick Sobsey says the answers to these questions are sometimes unsatisfactory. Sobsey is director of the John Dossetor Health Ethics Centre in Alberta. “When we’re talking about scarce organs like hearts and lungs, ethicists speak about what they have dubbed ‘distributive justice,’” he says. “For the most part, our sense of who should get transplants is that it should be based on who is most likely to survive the operation, who is most likely to live the longest and whose need is most urgent,” Sobsey says. But, he adds, there are times when that doesn’t seem to be the case. “There have been a number of studies over the years that suggest that financially well-to-do people are more likely to get transplants than poor people, that socially powerful groups are advantaged over marginalized groups.”
Most famously, there is the instance of baseball great Mickey Mantle. Mantle was an alcoholic, and in due time his liver gave out. In 1995, at age 63, he was put on the waiting list for a transplant. Though the average wait time was three to four months, Mantle received his liver in just one day, provoking cries of favouritism.
Closer to home, but at about the same time, Sobsey notes the case of Ray Nelson, a lumber store owner in Lloyd-minster, a town that straddles the Saskatchewan-Alberta border. In 1999, Nelson received a heart transplant at the University of Alberta Hospital at the ripe old age of 79.
At the time, says Dr. Dennis Modry, then the hospital’s chief cardiologist and director of the heart and lung transplant program, all transplant programs observed guidelines excluding certain groups of people from receiving transplanted organs, for a variety of reasons. People with HIV were excluded because the process entailed suppression of their already compromised immune systems. People deemed not “mentally competent” to care for themselves in the aftermath of the operation were excluded, and the elderly, like Ray Nelson, were excluded on the grounds that they were less likely to survive the operation and to live long lives afterward. But Ray Nelson was an elderly person with a difference. He was a friend of Modry’s. “We changed our criteria,” he says.
Modry points out that the decision to put a person on the wait list is not made by the cardiologist alone, but by a “cast of many people” including the transplant team, nurses, a social worker, physiotherapists and even an ethicist and a member of the clergy. Nevertheless, he agrees, the head of the program can wield a certain influence, and he freely admits that in Nelson’s instance, he did: “I made the case in a variety of different ways for Ray.” Nelson (now 88, and still kicking, disarming to some degree the longevity issue) doesn’t dispute that it’s good to have friends in high places: “Dr. Modry made all the members of the committee come to my room and spend time with me to prove I was fit,” he gratefully recalls.
When the moment came for the committee to decide, Modry says, “It was necessary for me to recuse myself from the decision.” Correct in the letter maybe, but hardly in spirit, says ethicist Sobsey. It would be naive to think that when the chief cardiologist left the room, his influence left with him, he says.
The committee put Nelson on the waiting list. Modry himself performed the operation, transplanting a 55-year-old heart that would have been unsuitable for other patients, and making Nelson the oldest heart transplant recipient in the world.
Nelson’s wealth further clouded the ethics of the situation, Sobsey notes. “Somebody like Ray Nelson has the potential to be a significant donor to a hospital or a cardiac centre,” he says, “and it doesn’t matter so much whether he does or doesn’t make such a donation. The potential to do so is the issue.” (In fact, the R.J. Nelson Family Foundation subsequently donated $1 million to the Mazankowski Alberta Heart Institute, the future home of the cardiac sciences program of the University of Alberta Hospital.)
Modry had earlier been involved in another transplant controversy. Terry Urquhart, a 17-year-old Albertan, “an athlete and a gregarious being” according to Bruce Uditsky, CEO of the Alberta Association for Community Living, was dying from a congenital condition and needed a lung transplant. The transplant committee headed by Modry denied him a place on the waiting list, Uditsky says. Modry says Terry’s application was not denied but deferred, pending further discussion.
But why denied or deferred? “Terry had a cognitive disability,” explains Uditsky. “He was born with Down Syndrome.” At the time, the guidelines of the international body governing heart and lung transplants barred “mentally incompetent” people from receiving a transplant, and Modry’s committee followed the policy.
Uditsky says the Association for Community Living led the fight to overturn the policy, while Modry says the initiative for change came from the committee itself. In any case, after long debate, the policy was changed. Urquhart was placed on the list and began to prepare for a transplant, but died unexpectedly before the operation could take place.
Sobsey credits Modry with eventually becoming an influential force for policy change. Yet Uditsky maintains that both stories raise “the question of who goes to the front of the line, and what role social prominence plays.”
Should life and death decisions include input from the donor’s family? Another vexed ethical issue, says ethicist Flaman. When the donors are living, they participate. For example, a person can decide to donate a kidney to a sibling and not to a stranger. But when the donor is deceased, no such discretion is given to the family, even if they want it, and often they do.
Families don’t want, for example, to donate a lung to a smoker, who might squander their gift, according to donor co-ordinator Gordon. Nor are they at ease with providing a liver to someone who is an alcoholic. Flaman imagines how such discretion might go awry. What if they wanted to specify the recipient’s gender, sexual orientation, race or social class?
That brings Flaman back to the case of Ray Nelson, where social class did appear to be an issue. Do medical doctors necessarily make better decisions than donors’ families? he asks. At the very least, Flaman says, the criteria for these decisions need to be transparent and open to public scrutiny.
Medical authorities have made another controversial decision on behalf of the rest of us: organ donations from the deceased must be anonymous.
Transplant units will allow recipients and donor families to communicate but only to a strictly limited degree. Communication must flow through the hospital and is purged of any information that might allow either party to determine the identity of the other. Bonnie Lamey has had contact of a sort with some of the recipients of Donald’s gifts. “The liver [recipient] never forgets. I always get a card at Christmas and Easter, and one on the date she received her liver, February the 14th.” The nameless liver transplant recipient has written that she would like to see a picture of the person “who gave me my chance in life.”
For her part, Lamey, who believes that her son’s spirit lives on in others, says it would be the closest she would come to reunion with her lost son, this side of heaven. But, “The hospital won’t allow us to meet or give us each other’s name. They edit the letters. You see blackout marks on them. That’s censorship,” she charges. “That policy should change.”
Although she complains about this aspect of the process, Lamey keeps her own signed donor card in her wallet. She would agree with Flaman, who concluded his review of the ethical concerns swirling around organ donation and transplant with a reference to the Gospel of John that proclaims, “There is no greater love than to give one’s life for another” (15:13). Says Flaman: “Organ donation carried out under proper conditions is a beautiful and modern expression of Christian charity. It gives dignity to the person who in death becomes a life support for another; it shows noble concern for the respect of the life of others; and it implies a sense of communion with humanity.”
Sidebar: Life support
Worldwide, the need for transplantable organs vastly outstrips the supply. Some figures from the International Association for Organ Donation and Ontario’s Trillium Foundation:
• Every 13 minutes, a new patient joins the waiting list.
• Every 96 minutes, a patient dies from waiting too long.
• In 1995, from a list of 2,592 patients, 1,524 Canadians received organ transplants.
• In 2004, from a list of 4,013 patients, 1,773 Canadians received organ transplants.
• As many as 250 Canadians will die this year waiting for an organ transplant.
• Only 14 of every million Canadians donate organs for transplantation, giving Canada one of the lowest donor rates in the industrialized world.
• Donor rates in Portugal, Spain and the United States range from 20 to 32 per million.
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