Meagan Mahoney is a pediatric intensivist at Alberta Children’s Hospital in Calgary
Jennifer Woolfsmith is Mackenzy’s mom
Matthew Weiss is a pediatric intensivist at the Centre Mère-Enfant Soleil du CHU de Québec and medical director of organ donation at Transplant Québec
Organ donation is a gift. Not just for those who receive, but often for the families of those who give.
When 22-month-old Mackenzy Woolfsmith died suddenly and tragically in 2012, her organs saved the lives of four people. For her parents, this decision has made a lasting, positive impact on their lives, one of the few positive aspects they were able to salvage from this traumatic loss. The story of Mackenzy’s parents’ experience of organ donation as a gift received, as an integral part of end-of-life care and bereavement, is, we believe, a story that is not told often enough.
Most Canadian physicians are aware of the great need for donated organs and tissues. In a large multidisciplinary survey of Canadian health care professionals, 99% approve of organ and tissue donation. Our colleagues understand that waitlists far exceed donor rates and that many will see patients die while waiting for a life-saving transplant. For those who have witnessed the rebirth of patients and their families after being given new hope through the gift of transplant, those benefits are clear. Yet the other side of donation is often overlooked: the benefit it can convey to the donor’s loved ones.
Health care providers often consider organ donation only from the perspective of the gift that is given to others. As such, approaching a family at a time of crisis can be perceived as asking them to sacrifice something in their time of loss. We currently have a limited understanding of why physicians might not approach families in these situations. It is possible we worry that it could bring more pain or be offensive to the family. Possible negative implications of the process (delays to withdrawal of life-sustaining therapy, perceived continued suffering) may cause us to forget about the possible benefits, and that makes us hesitate. Lack of accurate information about donor eligibility or lack of resources limit our ability to inform families of their options. Together with a sincere desire to protect families from further harm, we may avoid approaching families with the option of donation.
But what if we could shift the framework in which these conversations were had? What if we frame the approach as offering them a tool that may help them in their grief, rather than being an extra burden?
The experiences of families who have been through the donation process is slightly better understood by qualitative research, but large gaps in knowledge remain. Many families report the need to find some meaning in a tragic loss, and their hope to prevent another family from a similar loss is a guiding principle for their decision to donate a loved one’s organs . While the act of donation itself does not seem to impact aspects of the grieving process such as detachment or rates of depression, for those families that choose to donate, the meaning attributed to donation has been shown to impact grief and a parent’s experience of loss. These studies also suggest that families are so focused on the tragedy of the loss they are experiencing that discussions around donation are peripheral. Families interviewed did not feel that donation conversations or requests added any further emotional pain or stress at their time of loss . Structured research into the lived experience of families who have been through the donation process is ongoing and important. It will help organ donation organizations and clinicians understand how to measure their performance so they can improve their practice in this sensitive area. This research is critical for system performance and improvement, but not everyone needs this research to know that the act of donation can be a gift in and of itself.
For Mackenzy’s parents, knowing that their daughter saved four other children has brought some sense of meaning to the senselessness of losing her. It has provided comfort during and after a tragedy and has provided knowledge that a physical part of her lives on in the world even when they can no longer hold her. Nothing could ever reduce the devastation of losing Mackenzy, but they also feel an overwhelming sense of pride in knowing the impact she has left on this world. And that pride acts as a critical counterbalance to their devastation. This is an anecdote, not evidence. But it is also true. As physicians with a focus on donation, and the parent of a pediatric deceased donor, we know that this perspective is not unique.
When there is nothing more we can do to save the life of a patient in our care, we as Canadian health care professionals can offer organ and tissue donation for the grieving families right in front of us. We believe that the families of all Canadians receiving end-of-life care have the right to be provided information regarding organ and tissue donation. In most provinces, we have a legal responsibility to provide this information. When we do not offer information around donation options we deny families donation opportunities. By not seeking to understand families’ wishes we are withholding a potentially helpful therapeutic intervention. Conversations about organ and tissue donation must find their place in the context of the excellent end-of- life-care we strive to provide for our patients and families. If we can do this, we can maximize the full impact of organ and tissue donation.
Organ and tissue donation is a gift: the gift of life for those awaiting transplant and quite possibly the gift of meaning and purpose for a parent, spouse, child or friend as they face an unimaginable loss.
Is it possible to pursue a change in policy where everybody by default is an organ donor? If they wish to opt out the can, but otherwise it is expected that everyone that passes away can donate their organs, so is not a decision a family really has to make but part of the process when losing a loved one.
The idea that next-of-kin decisions are limiting organ donation is a bit of a misconception. In cases where the potential donor has indicated their intentions in advance, the next of kin are almost universally accepting of that wish. When the potential donor’s intentions are unknown, the next-of-kin’s decision can be difficult but it’s likely that they take the request for donation seriously and their consent or refusal reflect an honest attempt to represent the patient’s wishes. If anything is going to be mandatory, it should be for all adults to register their personal intentions, pro or con, organ donation. A policy that presumes consent for organ donation and forces next-of-kin to accept it against what they believe might be the patient’s wishes … is likely to make a terrible situation even worse for some families and likely to end badly for organ donation, in general, after the inevitable court challenges.