Interviewed by: Allen Li and Alexander Mastrolonardo
Dr. Andrew Healey is Chief Medical Officer of Donation at Trillium Gift of Life Network, the Chief of Intensive Care Unit at William Osler Health System as well as an emergency physician at St. Joseph’s Healthcare Hamilton. We had the chance to discuss organ donation barriers and policy with him.
A: What crucial message in regards to organ donation would you like to get across and what are some of the biggest barriers to the ways we can address any concerns?
H: I think they’re one and the same. The first, most important thing is that we want people to think about organ donation, we want people to talk to their families about what their wishes would be should they be in a situation where organ donation comes up, and we want them to register their consent for donation at beadonor.ca.
In almost equal importance, however, is talking to your family about what you would want. This is because in most circumstances where organ donation presents itself as a possibility, your family are the ones that are asked to provide consent. You can register your consent on beadonor.ca, but the most seamless way to relieve your family of any stress at the time and to ensure that you get what you want, is to talk about your decision to them, why it’s important to you, and why you want to help other people.
One misconception is that people assume they would not be a good organ donor, or they think that there’s a medical condition they have that might preclude them from being a donor. The people that are accepted for organ donation differ from time to time based on the recipients that are on the list. Most importantly though, the medical criteria is changing over time. What might be a contraindication for donation today, might not be tomorrow. For us, it’s really important for people to understand that the “yes” they give is to other people, not organs. It’s the gift of their consent. And if they’re willing to consent to donation, we are willing to ensure that they’re suitable and they’re safe. So don’t rule yourself out as an organ donor because you might have a medical condition, or are older. For example, a barrier to consent we face on a regular basis is: “I don’t want to donate my lungs because I smoke.” People who smoke can go on to donate their lungs.
A: You recently mentioned your example of patients who have smoked in the past and they could donate their lungs. Has it always been this way or has the ability to donate organs in spite of medical conditions just recently come about?
H: I don’t think that particular example is new, but the global sentiment should be that even as a donor physician, I don’t make decisions about what organs are safe for a recipient. What I try and do is make sure that we give the opportunity to the family and the patient to decide, and we let the transplant programs have an opportunity to review your case and see how you can help other people. It is definitely true that the criteria for donation changes over time as transplant sciences advance, and as our ability to assess organs, our ability to manage organs, and the recipient list changes. However, the important message is that your gift is in your willingness for us to proceed with an evaluation for donation.
A: When a patient comes into the emergency department with a poor prognosis, what are some of the steps to bringing up organ donation and end of life decisions? Similarly, what parties would get involved and to what extent in that time?
H: This varies a little bit from province to province but I’m going to take the liberty and speak about Ontario, but I’m going to speak about some general concepts first. The most important method here is that emergency providers primarily work to save lives. Our first responsibility is to provide full support, and do everything we can to save your life. It is only once all of those things have failed that there is a shift towards thinking about organ donation. Even when I see someone with a very poor prognosis, [say a] brain injury, my first important step in the treatment of that patient is to not make a premature prognosis decision [but instead, to] resuscitate them maximally, normalize their laboratory values, get a formal neurological assessment, get better. Once you have either a determination of death (you decided that the patient meets the criteria for brain death), or [agreement] between the most responsible physician and the family that the quality of life that would result from this would not be what the patient would want, you make a decision to stop invasive support and talk about donation.
Really, there are only 2 circumstances when we bring up donation with a family for consideration. The first is, somebody has died with their heart still beating, and we call that brain death. The second is when a family or patient, or both, have made a decision to withdraw invasive support and provide palliative care. If we do that, then we would raise donation. We would always have a conversation about that, but I think that the most important thing is that it’s only those 2 circumstances that we really are asking for consent to donation. Our first job is to save life, and once we realize that we can’t do that anymore, we move into a discussion about donation.
When we get to those triggers: death by neurological criteria, or a mutual agreeable decision to withdraw invasive support between the family and the doctor, specialists in organ and tissue donation who are nurses specially trained in having this conversation in donation are introduced by the intensive care physician, and they will have the expert conversation with them about donation. They understand the circumstance the families are in, to the best of their ability;.they understand the prognosis and decisions made by the clinical team. A gentleman I view as an expert in family conversations in Arizona, Marcel Pincince, says “donation is not a question. It’s never a mention – it’s always an expert, skillfully lead conversation.” The families get the right information, they only need to get it once, they hear it properly, they get all the information they need to make the right decision at that time, and they’re not asked to make decisions that don’t exist for them.
The system is so complex that we want specialists to do that. I’m as much of a donation champion as anyone, and I can’t think of a circumstance in the last two years where I raised [the topic of] donation with a family. I introduce the specialist and they take it from there. They have the best understanding of the system and what the potential of the donor is…and they’re able to care for these families in a really skillful way, since they spend a lot of time training for that. Doctors tend to believe we’re the best at everything, and that isn’t true. Here, it’s the nurse specialist and the organ/tissue donation coordinators that are the best.
A: So it seems that a lot of donation starts with a form of advocacy, and translating this knowledge to the public, but do you think anything can be done at a policy and systems-level, in the context of organ donation?
H: We’re pretty privileged in Ontario, we have the Trillium Gift of Life Network. Our laws require hospitals to notify us in the setting of imminent death or withdrawal of life support, and the fact that you have a mandatory referral requirement is perhaps one of the strongest elements of organ donation policy in Ontario. We’re very lucky in that way. And I think that every hospital has an organ and tissue donation policy that talks about following the law and the requirements of the law. I think that notification and referral is a really crucial step and allowing that stuff to happen in a way that respects the current care of the patient, and it respects the fact that families want to make that decision once they’ve reached the particular point allows the healthcare team to preserve that particular opportunity for donation, and then to ensure that an expert is available to talk to them. I think that for us in Ontario, policy is actually a strength. And I think that advocacy comes around registration and around discussing it with your family and ensuring you’ve thought about it and your family knows what your wishes would be if you find yourself in that circumstance.
A: How do you determine who goes first on the transplant list?
H: Most importantly, donation is whether or not an organ is suitable for transplant. Decisions are made based on the medical facts about that organ and about the donor overall. We have specialized testing we undertake, and there’s a special system of evaluation that occurs by the hospital where the donor is residing, and by TGLN through infectious disease screening. We look for infections that can be transmitted by transplantation; we look with the best of our ability to make sure that none of those are present. And then a transplant expert, whose primary job it is do determine if an organ is suitable for transplant, makes that decision every time. They take each individual circumstance into account every time. There are complexities in every single case and that’s why we rely on transplant programs and transplant physicians to make the decision about suitability. Once you have an organ that’s suitable, that organ is offered to the next person on the waiting list. This list is based on urgency of need. If you have someone who’s very sick, they will be at the top of their list, and so that person would receive the offer first. The patient’s personal details, the transplant physician would never know. We would just know that they’re listed, and they’re suitable for transplant and we would make a decision about suitability for donation, and those things could match up. That way it’s the fairest, most transparent process that it can be.
A: Organ donation and transplantation process – do you believe the current system is as efficient as it can be? Are there any changes that you would want to see if there are any drawbacks?
H: I believe the current system works reasonably well in Ontario. The current system starts with a patient with organ failure who is diagnosed by their primary care physician, they may be referred to a specialist and then further to a transplant specialist if transplantation is called for. The patient then meets the transplant program for evaluation by a panel of medical and psychological specialists. If they decide to list the patient, the patient is then placed onto the transplant waitlist managed by Trillium Gift of Life Network, which ensures that the patient receives a fair and equitable system across the province towards getting their organ. The system is extremely complex and organs are in short supply; however, the system is there to ensure that the organs go to the right person based on the fairest of policies, which I believe the system does do in Ontario. There are different ways in which the system can be more efficient. If possible, we would want to make the process shorter once we get consent, however, in general, we do a very good job at providing services to families who are in a tragic circumstance and try to provide the safest possible organ to the recipient in need. There will always be efficiencies that can be improved, however, there aren’t any current glaring major issues that we see in the current process that could be easily fixed.
A: In comparing Ontario to other jurisdictions, some other jurisdictions run through a presumed consent structure. What are some of your thoughts and opinion towards this topic, especially in your role as an emergency physician?
H: So generally, those are known as “opt-out” systems, where individuals [are presumed to be organ donors unless they withdraw their consent. There has been growing data on this, however, that in general, this isn’t the system for Ontario right now. I think generally the misconception with the “opt-out” system is that it would make donation mandatory. This isn’t true. I had the opportunity of doing a fellowship in Spain, where they utilized the presumed consent “opt-out” model. Regardless, the family is still consulted to gain consent towards organ donation. As such, I don’t believe that would change our system materially, although it does often generate conversation towards when that change would happen and what would happen. I think we will learn more from the systems that are trying this now. For example, that are systems in the United Kingdom that are implementing that practice in select regions and studying this practice rigorously. The data that will be provided through those studies can provide us with more information.
A: Finally, can you tell us a little about your role in TGLN and what you do in that role?
H: Well, I’m the chief medical officer for donation, in addition to me there are other regional medical leads that are responsible for other regions of the province. We’re responsible for creating and providing medical advice to the systems around donations and optimizing systems-level performance and education for physicians. We do provide an on-call service for when people inquire about the process of donation, determination of whether a person is deceased, or question for specific cases, we’re available to consult to those cases around the clock. Our main focus, however, is physician education and systems-level resilience and policy. We also provide physician oversight, we provide guidance on the medical side of donation. In the province there are around 60 or so hospital donation physicians right at the moment, one in each of the hospitals across the province for the most part. Those physicians take a lead in their own hospitals to follow policy and ensure policies are met to preserve the opportunity of donation for patients and their families. That’s what I spend most of my time doing, and a smaller portion of my time on active case call. That’s the donation side, however, they are also a transplant side. The transplant side has transplant physicians that do transplant calls with us, they talk about the general suitability of donors and also provide the medical oversight of the transplant side of Trillium Gift of Life Network.