Widow says new guidelines for organ donation after assisted death honour her husband's wishes

Transcript

In the final days of Bob Blackwood's life, he knew two things — he wanted a medically assisted death and he wanted to donate his organs.

Thanks to his wife Heather Ross, both of his last wishes were fulfilled. But the process wasn't easy.

Almost 7,000 people have received medical assistance in dying (MAID) since it was legalized in 2016. But according to the Globe and Mail, only 30 of those people have donated organs. 

For the first time, there are now national guidelines designed to help doctors navigate the ethical and practical questions that arise from organ donation in MAID. They were compiled by Canadian Blood Services, the Canadian Critical Care Society, the Canadian Society of Transplantation and the Canadian Association of Critical Care Nurses.

As It Happens host Carol Off spoke to Ross about why she hopes the guidelines will make the process easier for patients and their families. Here is part of their conversation. 

Heather, can you explain to us, first of all, why was it important for your husband to donate his organs?

He had always wanted to donate his organs if he had an unfortunate catastrophic accident. He actually had signed the donor card. I had as well and we also put it in both our wills.

He also has had friends that have had organ donation and knows just how wonderful that gift is.

How much more difficult or complicated was it to donate his organs after he had a medically assisted death?

I wouldn't call it difficult because it felt to him like a wish that he wanted to be able to help someone else live because he had no choice in dying earlier than he would have liked because of the nature of his disease.

And so the fact that he was able to donate his organs almost was a privilege. It actually gave him courage to get to the day when he could donate his organs.

His disease was neurological?

Correct. He originally was diagnosed with Parkinson's and then it took on a much more degenerative form and he was diagnosed with multiple systems atrophy.

And he was in excruciating pain?

Excruciating pain, yes. Intolerable and incurable, untreatable. And it was a difficult journey for him to get access to medically assisted dying because of the criteria for MAID in Quebec.

With the end-of-life criteria, he actually was denied when he first applied for it and then, fortunately, he got a third opinion, and was finally given access.

But by then, his suffering was even worse. He didn't even know whether he could make it to the day when he could have MAID so that he could also donate organs.

I'm so sorry you had to go through all that. People imagine if they were going to have a medically assisted death that it's going to be at home, surrounded only by your loved ones. But in this case, your husband Bob had his death in an operating room. What was that environment like?

It wasn't that bad. It was actually still very supportive and reassuring.

My understanding is some people don't want to donate their organs because they can't do it in that environment. That's, I think, why these new rules are being put forward, so that we can do that in the future.

But I still think until that happens, it's very worthwhile and can be still a very loving, comfortable process. And just the fact that Bob could do this for someone, that took away all his anxiety and fear of the actual final day.

It actually, in some ways, turned a tragic day into a miraculous day that was potentially going to save the lives of other people.

That's wonderful.

Yeah, and that's actually what did happen. The two people that received his kidneys, last I heard, were doing very well.

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The doctor who was administering the MAID — because you were in the hospital operating room, it's more impersonal — but how did he make it personal?

By thanking both Bob and I for helping set precedents and a protocol to help people in the future be able to do this.

It was an extraordinary experience for him as well and for everybody in the room.

And for you?

And for me as well. It was so respectful and really honoured Bob's choice and I just can't tell you how moving and amazing it was. 

Do you expect that perhaps part of your husband's legacy will also be that more people will be willing to do what Bob did?

Absolutely. And just being able to share this with you is making one of his wishes before he died come true.

He asked me to try and tell his story so that other people can benefit and maybe have an easier time of accessing MAID as well as organ donation.

I also feel very strongly that people with neurological conditions like Bob's should have easier access to medical assisted dying.

Bob's really made a difference, hasn't he?

He really has. His case brings out a lot of different issues regarding MAID and how it actually happens in real life and how we need to make changes to make it better for everybody.

Written by Sarah-Joyce Battersby and John McGill. Interview produced by Sarah-Joyce Battersby. Q&A edited for length and clarity.