Interviewed by Kevin Chen, Alexander Mastrolonardo, and Grace Lee
Dr. Bruce Wainman is the director of the Education Program in Anatomy at McMaster University and the McMaster Surgical Skills Lab. He has begun to work with the Trillium Gift of Life network to facilitate a new program allowing those ineligible to donate their organs for transplantation to instead donate their bodies to education. We had the opportunity to chat with Dr. Wainman about the anatomy of organ transplantation and his work with procuring new anatomical specimens.
This documents the second part of our discussion with him. To see the first part, click here.
It seems like in some countries, like Canada and the US, there is a high shortage of organs and that poses a huge problem. But in other countries, particularly ones with an opt-out policy, there is no shortage at all.
Dr. Wainman: They have presumed consent. Our problem is that we don’t. Our problem is that if you have to approach a family who is having a very difficult time, when they can’t take any more strain and when their lives are at a very difficult state, you have to try to convince them that their loved one should be taken off life support and have their organs donated.
At what point did we diverge? What lead to the non-presumed consent system that we have?
Dr. Wainman: I don’t know the exact point at which the legislation diverged. Organ donation is an incredibly young field. You guys might not have known anything else, but I’m old enough to have seen and heard about these breakthroughs that people could be saved. Back in the day, you almost had to have exact tissue matches. But with the immunosuppressant drugs, it has made a huge difference.
So there doesn’t seem to be a good reason why we keep having a shortage, if it’s just a legislative barrier.
Dr. Wainman: Yes, many people would argue that. Almost every transplant physician would say, “i just don’t understand. The person is already dead. How come we can’t keep the living going?”
It’s hard to believe, but people are falling off – no, dying off the transplant list daily. Or having their health so severely compromised that their lives are shortened for having to deal with damaged organs for such a long time. Even if someone signed the organ donor card, we still need to obtain consent from the family.
We’ve heard that a family can take away consent after it’s been given.
Dr. Wainman: Yes, just as if someone wishes to donate their body to the lab, if the next of kin says no then it’s a no.
But isn’t that a protective feature? What if they’re not in a state to be capable of making these big decisions?
Dr. Wainman: Normally, they would have signed a donor card a long time before this point. I know of no cases where a person is in corpus mentis (“of unsound mind”) and has been asked whether they would like to donate their organs. Generally speaking, it is young people after catastrophic accidents that serve as organ donors.
Much of the problem is that you’re going after a person at a moment when their family is going through a terrible crisis. You’ve got to try to convince them.
The idea of taking the organs out of a person – vivisection – is the thing that people fear more than anything. Every culture would say that taking the organs out of a living person is wrong. So families feel that, when looking at their loved ones on life support, that they are still alive. But, as I discussed in my talk, that definition of “life” is very problematic. Their life is not sustainable; it’s only there because of the incredible leaps in technology we’ve made to keeping them breathing, even during multiple organ failure. It doesn’t last forever. So, the idea that we only donate after cardiac death is quite complex.
But, it is legislative. If we had the opt-out system, where people have to explain why they disagree with organ donation, (our system) would be more similar to that of Spain’s and Belgium’s. In that case, everyone would go off the list.
It seems as though the concept of donating of an organ is very hard to just accept instantly. So if people have time to get accustomed to the idea, maybe they wouldn’t be as shocked when they actually do it.
Dr. Wainman: So, what if it was normal? What if it was accepted that after you die, your tissues would be donated? If we just went ahead and made that clear from the beginning, there wouldn’t be this “sales job” that happens to make sure that people understand how important donation is, how the person is no longer suffering, etc.
I think that people also want to keep on hoping for a little while longer.
Dr. Wainman: Yes, but I think what must happen is to tell them that there’s hope – but not the hope that they are thinking of – rather the hope that they can save some other people. Hope that their death can help someone else.
In the Service of Gratitude, I tell them “I know you’ve all had a difficult year, and you may be wondering what I can offer you. One thing I can offer you is some hope. Hope that the person who died is not gone from our lives. Hope that what they’ve done is going to live on.”. As I’ve said, if you want someone to be dead, don’t talk about them. Then they’re truly gone now. BUT, if their legacy lives on and you talk about them, remember what they did, then they live on in our memory. And I can tell you that when someone donates a body, they literally live on and make a huge impact in the life of that person, and obviously in the life of a family.
I think you have to have that transference. The idea that they’re not going to live, but here’s something that you can do which is positive in this situation. It’s not easy, but every year, I try to communicate this to families. “Look, I know it’s hard, but it’s better than nothing. It’s better than just putting them into the grave.”
How much do you think a lack of organ donation can be attributed simply to a lack of knowledge about the fact that it is an option?
Dr. Wainman: I think that everybody knows at some level that organs can be donated, but they’re very ignorant of the circumstances. I think a lot of people imagine that anatomy labs are pulling in bodies which should be used for organ donation, but that’s not the case. Organ donations are very special cases.
I think most people know about the theory of organ donation, but the practice they’re quite ignorant about.
Is it possible that someone can ever donate to both the Trillium Gift of Life and the Anatomy Lab?
Dr. Wainman: If someone has donated corneas, we can take them in for anatomy education. But when they’ve removed organs, it’s a major surgery and we can’t really involve them [in the Anatomy Lab]. Even for surgical skills, its hard because the organs people need for their procedures are gone.
We never, ever, ever want to be seen in conflict or competition with organ donation or Trillium Gift of Life. This is why work together to find something good for people’s lives that ended in such a difficult way.
Our last question: how has body donation and bequeathal affect the perspectives of the families?
Dr. Wainman: My feeling is that it is almost universally positive. I get to visit these families almost every year, and when I get up [to speak], I’m all struck by how incredibly sad these families are. They are all sad, because they’ve lost a loved one and they are all a bit afraid, because they really don’t know who we are, and what we do. We tell them how useful it was, have students tell them how big of a difference it was made in their education, we have people from the lab and an educator, etc. And I would say, almost nobody realizes how important their donation was beforehand. But in all my 12 years, and 12 Ceremonies of Gratitude, I’ve had nothing but families saying “Thank you; I feel so much better about what we’ve done. This was a difficult decision for us but now I realize it was the right one… thank you for giving us this opportunity.” It’s amazing, because we brought them there to thank them. And they’re saying, “thank you for bringing us together during this difficult moment, thank you for making us feel significant.”. This is an unbelievable “win-win”; we all feel better and the families feel as though it was the best thing they could have done. Everyone at the ceremony realizes how important it is. The number of the people who come to me afterwards and say “I would love to donate my body to the program. I think it’s such a great thing.” or “I just didn’t understand.”, or “I resisted that person donating and didn’t understand”.
I’m telling you, that giving people hope that their donation will live on, is the best and most amazing moment for me every year. I used to be nervous because I would have to get up in front of people who had a very difficult and sad year, and I never knew how they were going to feel. But now I know; they’re all going to be feeling better at the end. Body donation didn’t just help that donor’s “karma”, it helped everyone in the family. It seems to be a panacea, a universal cure for sadness that people have. You’re never going to get the person back. But you can make [body donation] the last, best thing they do. It’s a big deal.
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From our discussion with Dr. Wainman, we learned much more about the deep and incomparable gift of donating one’s body or organs to the anatomy lab. Furthermore, we gained a deeper appreciation of the rich history of organ donation. Hopefully through his developing work with the Trillium Gift of Life Network, Dr. Wainman and the McMaster Education Program in Anatomy can continue to provide hope for families, so that their loved ones will live on through their contribution to others.