(Norm and Indra Betts)
After a year and a half battle with ALS, Norman Betts decided to undergo Medical Assistance in Dying (MAID) in 2021.
His family wasn't surprised to learn that Norm wanted to donate his organs as part of the process. His daughter Camille remembers him as a loving father who, as a regular blood donor, believed strongly in blood and organ donation.
"ALS is a cruel disease; there is no cure and no effective treatment so it can feel pretty hopeless," says Camille. "Organ donation gave a sense of meaning to his suffering. At least if he could not be here with us, he could give someone else the opportunity to be with their family."
Norm changed four people's lives through his donation – he donated his lungs, both kidneys and pancreatic islet cells.
The Betts family remember Norm as incredibly smart, funny and easy-going. Norm was an engineer in career and spirit, a loving husband of 35 years, and father to three children. Choosing MAID and organ donation was important to him because, as Camille recalls, "Being able to have a choice in his death and to donate his organs gave my father a sense of control in a completely uncontrollable situation."
(The Betts Family)
Camille clearly remembers that day: "It was a very emotional day, and it meant so much to be able to focus on our family and let the health care team take care of the rest. My father was able to have a dignified and peaceful death through the process of MAID and have his wish of donation fulfilled."
Because heart donation is not currently possible after MAID, Norm was not able to donate his heart, something he had felt passionately about. Camille is hopeful that that one day heart donation in the context of MAID will be possible.
Since 2017, 19 people have donated organs after MAID in BC. BC Transplant's organ donation team works collaboratively with the patient, the patient's care team, and the critical care team to support the patient through the process. The MAID procedure must take place in hospital for organ donation to proceed, and every effort is made to ensure the setting aligns with the wishes of the patient.
"One of our guiding principles is that all eligible patients have the right to be offered and receive information on organ donation at the end of life," says Dr. Sean Keenan, BC Transplant's medical director for organ donation. "Every eligible patient, including patients seeking MAID, should have the opportunity to speak with an organ donation expert with enough time to incorporate donation into their care plan."
As a registered nurse herself, Camille understands well the experience of people waiting for a transplant. Having worked with patients in kidney failure waiting for a new kidney, she is happy to know her father donated both of his.
The Betts family has received a letter from one of the kidney recipients and Camille says it was wonderful to hear first hand the impact of her father's donation.
"My father is still helping people, even in death," says Camille. "I would tell the recipients to please enjoy this gift and know that the person who gave it to them was an incredibly special and loved person. They have part of the best person I've ever known with them. I wish them health and happiness and many days ahead."