In the multifaceted world of organ donation, it is easy to overlook the families of those impacted by organ donation. A Family Services Coordinator provides comfort to the relatives of a recent organ donor, fostering a network of support and facilitating communication with a recipient. Allie Canaris is one such Family Services Coordinator working with the Trillium Gift of Life Network (TGLN). We had the opportunity to hear Allie discuss her role in providing relief to those who recently lost a loved one.
What is the Donor Family Support program, and in your opinion, how does it help support donor families?
Allie: Trillium Gift of Life Network’s (TGLN) Family Services Program provides ongoing support to donor families by providing the opportunity to communicate anonymously with recipients.
Could you describe the role you play in supporting donor families, and why it is so important?
Allie: Organ donation generally happens as result of a tragic and sudden loss. The family may experience feelings of shock and disbelief which add to the difficulty of finding their “new normal”. We are here to reassure families that what they are going through is common.
“Our goal is to provide a constant form of support for families who need to talk to someone who understands the grieving process.”
Who are the people and organizations you might liaise with, and what roles do they play in the Donor Family Support program?
Allie: When there isn’t a local match for an organ, TGLN shares organs with other jurisdictions. For example, an organ from an Ontario donor may save the life of someone in Manitoba – and vice versa. This means that we are in contact with other organ procurement organizations across Canada and some states. We share recipient or donor correspondence and provide updates on how the recipients are doing if a family inquires. If a family requests updates about recipients in Ontario, we rely on the post-transplant coordinators at the transplant centre hospitals to provide us with this information.
When you facilitate the communication between donor families and recipients, what do donor families want to know, and what do recipients want to share?
Allie: Primarily, donor families want to know that the recipients are doing well. They also like to know how recipients are spending their time post-transplant; what kind of hobbies they enjoy and how the transplant has affected their life. Recipients tend to initiate the conversations and are always expressing how thankful they are that their donor family chose to donate their loved one’s organs at such a difficult time. They often express their condolences for their donor family’s loss and are generally eager to update their donor family on how they are doing with their health and how their life has changed since their transplant.
How does organ donation affect the grief of a family member who has recently lost a loved one?
Allie: Many grieving families take comfort in the fact that their loss has helped save or improve the lives of others. When their loved one was registered (as a donor), it is especially comforting for donor families to know that they honoured their loved one’s last wish.
Corresponding anonymously with recipients also helps families with their grieving process. It gives donor families a chance to talk about their loved one and learn more about how the recipients benefited from the gift of organ donation.
In the end, it is ultimately a donor’s family that gives consent for donation. What do families usually want to know that will help them make this decision?
Allie: Our trained Organ and Tissue Donation Coordinators work with families during the donation, and our Family Services Program supports and provides resources for families after donation. Many families have shared with us that knowing their loved one was registered made providing consent easier because s/he had already made the decision to donate.
How do the support services offered by TGLN bring hope to families of deceased donors?
Allie: Donor families go through a unique process. This is why it is so important to keep the opportunities for communication open. Touch points every few months by way of a letter let the donor family know that the relationship is ongoing and supportive. TGLN wants donor families to know that we support them beyond the donation process and that donation will allow for hope and healing in their grief process.
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Family Services Coordinators such as Allie provide unique and individualized support that the families of organ donors constantly benefit from. By learning about these specialized and crucial positions within the TGLN, we can begin to understand the complex logistics that must be coordinated between donor families and recipients. Importantly, her work shows us that donor families are not alone and have access to a caring support network throughout the grief process. Allie brings insight into the irreplaceable and inspiring gift of an organ transplant that can forever impact the lives of those involved.
Allie graduated from Brock University with a BSc in Biology. She grew up in Hamilton and recently returned to Ontario with her husband after living in Vancouver for a few years. She has come to TGLN from BC Transplant where she fulfilled the role of both Family Services Coordinator and Quality Assurance Coordinator. Prior to that Allie worked in Quality Assurance with the Department of Fisheries and Oceans.