My Sister Died Waiting for a Transplant. The System Is Set Up for Heartbreak

My sister Shauna was listed for a liver transplant, the only potentially curative treatment for her end-stage liver disease, in 2003. All along, I believed that she was going to receive a successful transplant and be able to start a new life. I was attuned to the stories of those fortunate recipients who were able to get one and thrive, and I believed my sister would belong to that cast of heroes and survivors.

But during her eighteen-month wait for the “gift of life,” her health precipitously declined, and she died in an intensive care unit. Redemption was out of reach for her.

One friend of Shauna’s sent a condolence note that read, “I simply cannot fathom that this happened”; others apologized for not knowing what to say or opted for silver-lining messages about the richness of fond memories and relief that “suffering is over,” or even fevered words about death as liberation from mortal life (“May you fly on Angel’s wings!!!!!”). The condolences were sincere but also clumsy. Everyone seemed ill-equipped to process her death.

My sister was only twenty-nine years old when she died.

Both Canada (where I live) and the United States (where Shauna died) keep databases with statistics on wait lists, transplants, and “wait list removals.” In North America, more than 1,000 patients still die annually waiting for a new liver. Every year, thousands of patients are listed for a transplant. Approximately 10 to 25 percent of those people become “delisted.” Some succumb to “wait list mortality”; others are removed for being too sick to survive the procedure. In the US, eight people waiting for a liver transplant die every day.

In 2004, the year Shauna died, in the US region where she resided, there were 448 liver transplants and 168 deaths on the wait list. Eleven of those deaths were patients between the ages of eighteen and thirty-four. Shauna was one of those eleven people.

When Shauna was waiting for a liver, I never thought seriously about the shortfall of organs. I was aware that the need for organs exceeded the rate of donation. However, I was certain that she would be getting a liver transplant one day.

Initially, I had a hard time saying that Shauna “died”; instead, I would say that she “died waiting.” This seemed like an important distinction to me. To “die waiting” implies that a transplant didn’t happen in time. It implies a market disequilibrium, the supply falling short of the demand, and suggests that under better market conditions, her life could have been saved. I hoped that emphasizing that Shauna “died waiting” would make that point obvious—there aren’t enough organs for everyone who needs them.

About a week before Shauna died, I called the local newspaper in Raleigh-Durham, North Carolina, where she had lived for five years. The helplessness of waiting produced paralysis and lethargy as well as a panicky sense of urgency that couldn’t be addressed with any meaningful action. Calling the newspaper felt like doing something, a plea for acknowledgment that waiting for a liver transplant is a life-or-death crisis. That phone call resulted in a 500-word article titled “To Save a Sister’s Life” that was published in the Raleigh News and Observer on Saturday, November 27, 2004.

I don’t know what good I thought would come out of this very modest publicity (a side column on the front of the B pages). The article explained Shauna was on life support but stated that she could go back to normal life with a “new liver . . . If only one would surface.” I described myself as “desperate” and stated my case as follows: “What we are concerned about is this shortage and this kind of reluctance people have about donating . . . We were just thinking Shauna’s situation would let them know what this really means. This is not some kind of abstract notion of donating organs. This is somebody. This is a concrete person. This is my sister.”

My fixation was that Shauna needed a donor or else she would die. The article urged readers to donate organs and told readers that Shauna didn’t need to die, that her story “needn’t end badly.”

I hardly recall speaking to the journalist, though I remember calling her back shortly after the interview because I thought of something I wanted to say. In that brief interval, the article had already gone to press. I had grown accustomed to the attenuated pace of the hospital, so the clip of newspaper journalism was almost unfathomable to me. How could anything happen so quickly?

The tragedy of Shauna’s death would be that it was avoidable, since a cure was theoretically available. The doctors had everything within their power to save her. The problem, as I saw it, had to do with inadequate organ donation.

There is no way to overestimate the monumental significance of organ donation in the lives of those who need transplants. Coming so close to it personally gave it a shadowy resonance after Shauna passed away, like I was tiptoeing around pools of darkness.

I furtively signed the donor card that came with my driver’s licence renewal each year. I worried that organ donation was doomed by a panoply of fears and anxieties related to mortality and the boundaries of death, as well as squeamishness about bodily integrity. I worried that most people viewed organ donation as a sacrosanct and inviolable individual choice that was none of anyone else’s business. Occasionally, I did little fits of late-night research on the internet. I marked my calendar for an episode of The Fifth Estate on CBC Television called “Dead Enough” that probed whether, in all cases, organ donors are clinically dead. I watched it and hated it.

I started graduate school with the objective of studying the promotion of organ donation and quickly found out that it had already been overstudied, at least in certain niche areas. There is specifically an excess of research aimed at understanding what motivates people to sign donor cards and join donor registries. Coming from a humanities-oriented social science background, this type of research was unfamiliar to me. Most studies used models from behavioural psychology and tried to predict how a favourable view of organ donation can translate into signing up as a donor. For instance, a study may use the “theory of planned behaviour” to understand the pathways between “intention” (support for organ donation) and “action” (signing a donor card/registry).

The concept of “self-efficacy” comes up a lot. Self-efficacy means feelings of individual competency or a “sense of individual capacity,” as well as the perceived ease or difficulty of completing a task. It’s a perception or a belief that one is able to “enact a recommended behaviour to avoid consequences,” to succeed at a task, to solve a problem, and the belief that one has the power to affect situations (whether that belief is accurate or not). Supposedly, self-efficacy is a great motivator—people avoid tasks when self-efficacy is low and undertake tasks when self-efficacy is high.

This kind of behavioural psychology research informs the way organizations come up with messages to promote organ donation, as well as the way they form their public campaign strategies. For example, signing a donor registry is often presented to the public as highly self-efficacious, focusing on the positive outcomes that will result from a small simple act.

In Canada, people register for organ donation in their provincial jurisdiction, but the national organization Canadian Blood Services (CBS) serves as an umbrella agency for organ and tissue donation and its promotion. When I started my PhD research, the CBS website homepage for organ and tissue donation addressed visitors with the question: “What Does It Take to Save Up to Eight Lives?” Underneath, the answer is simply: “Saying ‘yes.’” (The dying part is left out.)

The rest of the copy enhances the reader’s perception of self-efficacy, implying that everyone who says yes has the capacity to save dozens of lives. It says: “Thousands of Canadians are in need of organ, tissue and eye donations. Hundreds die each year waiting for vital transplants. You can help change that by consenting to be an organ and tissue and eye donor. One donor can save up to eight lives. Tissue and eye donors can improve the lives of 75 more!”

Around the same time, the Trillium Gift of Life Foundation in Ontario used the slogan “It Takes Two Minutes,” stressing how little time and effort organ donor registration required. Remarkably, despite all the research aimed at understanding what compels people to sign up for organ donation, there is not much evidence that promotional campaigns for organ donation have a significant impact. Though few public awareness campaigns have been designed to allow their outcomes to be evaluated (by baseline comparison, pre/post testing, control groups, etc.) and it’s hard to gauge results that aren’t measurable or cannot be easily evaluated (such as exposure to the issue of organ donation), a study in the US has estimated that promotional and awareness campaigns, on average, have an overall effect of increasing organ donation registration by only 5 percent.

More significantly, public awareness campaigns are almost exclusively focused on urging organ donation registration, but signing up is not the equivalent of actual organ donation. When I started looking into this research topic, I had the impression that increasing organ donation was simply a matter of increasing the number of individuals who sign donor cards or join donor registries. I naively thought that when self-identified donors died, their organs would automatically be retrieved and distributed to transplant patients.

However, I discovered that most people (whether they sign up or not) will never meet the medical criteria to become donors or contribute, in practical terms, to an increase in organ donation. Only 1 to 2 percent of people who die in hospital meet these criteria. Eligible donors are quite rare, restricted to those who die in a hospital ICU and are mechanically ventilated to maintain sufficient oxygen levels so that their organs are viable for transplantation. In other words, a signed donor card does not mean you will be an eligible donor.

Historically, donor cards were intended to establish that organ donation is a voluntary and autonomous choice and thereby give individuals the right to offer their organs to others after their death as a “gift.” The Uniform Anatomical Gift Act, created by US lawmakers in 1960, determined that a donor card could be used as “evidence of the gift”—i.e., evidence of voluntarism (action based on non-coercion), which, along with autonomy and altruism, is one of what bioethicist Arthur Caplan calls the “ethical linchpins” of organ donation.

This responded to the need to garner widespread public approval for organ transplantation (back then, an unfamiliar practice) and provide a framework for organ donation that was aligned with medical, legal, and ethical standards, but it was not intended as a means to increase organ donation. One researcher points out that even the gift-giving analogy was never intended to be a persuasive message; rather, “the analogy between gift-giving and organ donation was originally adopted because it was believed most accurately to capture what was thought to be the most desirable way to procure organ donation.”

However, being a registered donor is not akin to “saving lives,” and having more registered donors does not necessarily mean that more organs will become available. In fact, a national report in Canada states: “It is difficult to link registries directly with higher donation rates.”

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The organ shortage was, in part, a product of the “transplant boom” of the mid-1980s. With transplant success rates improving thanks to the discovery of the immunosuppressant drug cyclosporine, the number of patients listed for a transplant began to rise during that decade, and those numbers have been rising ever since. To reduce the gap between the supply and demand, it became obvious that the co-operation of hospital and medical professionals in the process of organ procurement was more crucial than focusing on the willingness of the public to be donors. Toward this end, “required request” became federal law in the US in 1986 and eventually in Canadian jurisdictions as well.

This means that when a patient is brain dead, or brain death is imminent, or if a patient meets certain criteria of cardiopulmonary death, hospital staff are required to ask the family about organ donation (regardless of whether anyone has signed a donor card), making it standard practice and an operational norm. Required request has since been elaborated to include the creation of professional roles to support and facilitate organ donation in critical care units. An example of this role is a “donor physician,” who specializes in donor identification and referrals and having conversations with families, and who devises and follows best practices in those areas.

In the current lingo, health care professionals are responsible for increasing the “conversion rate”—that is, the rate at which potential donors (those who are clinically eligible) become actual donors. The problem is that the conversion rate is too low. To increase it, hospitals need better guidelines and practices to establish a “culture of donation” where all aspects of organ donation are integrated into their standard operating procedures.

Another strategy is increasing the eligible donor pool. The ideal donor has a fatal brain injury but is otherwise young and healthy, but these kinds of deaths are rare, and so other potential donors need to be considered. This expanded pool of donors is stretched to the limits of medical viability, given factors like age and health status. The increasing demand for transplantation has led to reconsidering who is young enough and healthy enough to be an organ donor. It has also expanded eligibility beyond those who are clinically brain dead but are being kept alive by life support to include some individuals with no chance of recovery from their injuries or ailments, and who will die within a short window following the withdrawal of life support.

Both Canada and the US have opt-in systems of organ donation (donor cards and registries), but functionally, they operate somewhat like an opt-out system. Organ donation may be your choice, but mostly, it’s dictated by circumstances that are out of your control: for example, how you die and the extent to which the hospital you end up in is proactive and encourages organ donation every single chance they get.

Shauna was in intensive care for the last two weeks of her life. The television was always on in the ICU waiting room, where I spent most of my time. One of the shows that frequently aired was What Not to Wear, a reality show featuring two fashion experts giving a makeover to an unstylish contestant with a wardrobe of ill-fitting, unflattering, and outdated clothes. Its basic feel-good storyline plays the same notes as the “before and after” transplant narrative. There is something bad (your clothes, your vital organ), an intervention takes place (reality TV makeover, transplant), and a joyful transformation follows (a new life with better clothes, a new life with a better organ).

I can’t help thinking that, as I watched that show (and I did many times), I must have felt a degree of reassurance in that comforting blueprint and its resonance with the storyline I had internalized about Shauna’s “second chance at life.”

Historian Hayden White says narrative gives reality “the mask of meaning, the completeness and fullness of which we can only imagine, never experience.” For White, “coherence, integrity, fullness, and closure” are narrative characteristics of wishes, daydreams, and reveries. They “produce an image of life that is and can only be imaginary.”

Transplantation is not a linear story that always leads to a positive outcome. But often, our knowledge and understanding of organ transplantation is limited to this “imaginary” version that posits transplantation as a rebirth.

A couple of hours before Shauna died, I posted an update in an online journal that said Shauna “had spiraled and crashed.” I began the journal post almost sheepishly with the quasi-disclaimer: “We don’t know how to say this.” I was blunt and apologetic, stating, “We had no idea that things were coming to such a bad end.”

The “bad end” we were faced with was dumbfounding. It felt like an erasure of everything.

Adapted and excerpted, with permission, from Other Endings: Organ Transplantation and the Burdens of Hope by Anita Slominska, published by McGill Queen’s University Press, 2026.