One tough conversation has the power to save eight lives

By Brianna Bendici

One organ donor can save up to eight lives and benefit the lives of 75 others through the wonderful gift of organ and tissue donation. However; when the age requirement in Ontario is 16-years-old to register to be a donor, at The Hospital for Sick Children (SickKids), this decision typically falls on the families of our patients and requires some emotional and difficult conversations.

April 17 to 23 is National Organ and Tissue Donation Awareness Week and is dedicated to sharing stories and raising awareness about the benefits of organ donation and the life-saving effects of transplantation. Diana Lee, Organ and Tissue Donation Coordinator for Trillium Gift of Life Network (TGLN) at SickKids, has a very unique position at the hospital that helps families through these difficult but meaningful decisions to donate their child’s organs. To gain a better understanding of her important role we sat down with Diana and asked her a few questions about this unique job.

Tell us a little bit about yourself and your background.

I have been at SickKids as an Organ and Tissue Donation Coordinator with TGLN for about a year and a half now. Before coming to SickKids, I worked at St. Michael’s Hospital where I gained an extensive background in trauma, neurosurgery and in the intensive care unit (ICU).  During my time there, I saw how meaningful organ donation was for families after a tragic death of a loved one and I decided I wanted to be an Organ and Tissue Donation Coordinator. I had the proper background working as an ICU nurse so I began an extensive four month training course that is required through TGLN. TGLN plans, promotes, coordinates and supports organ and tissue donation and transplantation across Ontario. Its mission is to save and enhance lives through the gift of organ and tissue donation and transplantation in the province.

What are your main responsibilities as an Organ Donation Coordinator at SickKids?

My main role is to approach potential donor families with information about organ and tissue donation and then to work closely with the families of deceased donors and support them through the donation process at SickKids. With the help of the SickKids team, I work to raise awareness about organ and tissue donation within the hospital and I work closely with the ICU team to improve the donation process specifically at SickKids.

Can you share with us a typical donation process?

There really is no typical donation process because every family is unique and every family has different needs. Our main goal is to provide the families with everything and anything they need to make the donation process meaningful to them. The process begins when a family is either faced with a poor prognosis or brain death of their child. Once they are faced with this news, I speak with them to decide how we can make end of life meaningful for them; one of those options may be organ and tissue donation. If they choose to proceed with organ donation, I continue to walk them through the process towards a successful transplantation. In addition to my support, families are offered other services such as prayer services, legacy building work created by the ICU team and resources from the bereavement team.

Do you have any responsibilities once the donation is complete?

Yes, I follow up with these families to provide emotional support throughout the process and after the donation is complete. Once a successful donation and transplantation has occurred I reach out to the donor family to let them know how their child has helped saved other lives. The donation is always confidential and anonymous, but we do tell the donor’s family the age and gender of the recipient. This information helps make the process meaningful for the family and shows them the life-changing impact their decision has had. The bereavement team at SickKids also follows up with these families and together, we support them in any way that we can, whether it be providing additional resources or emotional support.

What are the most difficult and rewarding parts of this position?

The most difficult part of my role is talking to parents who are dealing with the death of their child. Working in trauma previously, I have experience with these types of tough conversations; however, in trauma I also had the chance to meet the families who are thankful that their loved ones recovered. The most rewarding part of my current role is seeing how fulfilled families feel after donation. Being able to bring a little bit of joy to parents during a tragic situation is one of the most rewarding parts of my job. I am often so amazed at how families make such a difficult yet selfless decision – it takes a very special family to think of saving lives when they are faced with death.  

What is the most important lesson you have learned?

The one thing I have learned is many of us will eventually die without the ability to save a life. Being able to donate your organs is very rare as only two to three per cent of hospital deaths happen in a way that allows for organ donation. This shows just how important it is to register your consent for organ and tissue donation. Every person who registers has the opportunity to save up to eight lives after death. This is not only heroic but is the most meaningful gift you can give at the end of your own life.   

I have learned a lot working in this position; however, the most important lesson I’ve learned is to live your life today and don’t take anything for granted.   

Why is it important for people to sign up to be a donor?

A lot of families struggle with making this decision if they don’t know their loved one’s wishes. As a society, we don’t talk about death often because it is not something we plan, especially when you are young. Signing up to be a donor is one way you can express that you want to save lives when you die- one organ donor can save up to eight lives. Having these conversations with your family is even better as it makes it easier for your family to make decisions on your behalf and helps to lighten the tragedy of your death into a meaningful experience for them.  

What would you like people to take away from National Organ and Tissue Donation Awareness Week?

The main thing that I would like to highlight is the celebration of the donors and their families. We hear a lot about the successful stories of recipients who have received the gift of life, and it is just as important to celebrate and honour the donors and their families; because they are most definitely heroes too.