Interviewed by: Karen Jiang, Christine Wu and Kara Yeung
Canada-DONATE is a national program of research that aims to improve the quality of care surrounding deceased organ donors in the Intensive Care Unit (ICU). Comprised of multiple sub-studies exploring a wide range of areas relating to organ donation, including consent, obstacles or catalysts, and various groups’ attitudes, the program is a multi-faceted initiative with an overarching goal of increasing both the number and function of organs obtained from deceased donors. We had the opportunity to speak with Dr. Maureen Meade, a professor at McMaster University and the director of the Canada-DONATE Research Program, to learn more about her involvement with this project.
What inspired you to get involved in the field of the organ transplantation?
Dr. Meade: Organ donation is a very rewarding part of my clinical practice. When I completed my critical care residency training in Toronto, I had limited exposure to organ donation, and then I came to Hamilton where there’s a lot of organ donation activity – it’s one of the highest volume centres in Canada. Early on, before the Trillium Gift of Life Network even existed, it was the ICU nurses that taught me the importance of organ donation. They explained how they find it important to families of patients at the end of life to have this opportunity. It frequently helps families to accept a tragic loss and provides a form of comfort. As soon as I heard organ donation explained in that way it really resonated with me. Organ transplantation is clearly important in helping individuals on transplantation wait lists receive the transplants they need, but what many people don’t understand is that in the ICU our focus is on our patients and their families. I certainly value the importance to transplant recipients, but what intensive care clinicians truly value in the moment is the end of life care that we’re providing, so that’s what really inspired me.
The DONATE study’s overall goal is to improve the care of deceased organ donors in the ICU and to recognize how standards differ across the country. Can you share any additional research goals of the study?
Dr. Meade: Organ donation, like most medical services in Canada, is delivered provincially. Every province differs in the donation and transplant services they provide: the funding models differ, the institutions differ as not every province has a free standing institution like the Trillium Gift of Life Network, they have different degrees of resources and procedures around data content, collection and recording differ. Furthermore, procedures differ extensively from hospital to hospital because there is very little research to guide the management of deceased organ donors in the ICU.
When I set out to improve the clinical research in how we should be managing decreased organ donors, it quickly became apparent that I needed to work with my colleagues to standardize systems across Canada. Before we could do that, we had to link with every organ donation organization (ODO) to determine how they can collaborate and how we can unify the information and research data across the provinces to bring everyone up to speed on research that will be feasible across the country. That’s what we’re doing now. Ultimately, we’re striving to develop a national platform for randomized clinical trials that will be pragmatic. By pragmatic, I mean that we will rely as much as we can on data provided by ODOs to reduce unnecessary duplication of effort. So it’s about working together. As we’ve already completed a national observational study in over 30 hospitals across Canada, we’ve developed relationships with investigators and ODOs and learned about their current capacity to support this work. As a result, we can now conduct clinical trials, but we want to take it a step further and conduct these pragmatic clinical trials where we’re all working together to do the same thing for the same research.
We were looking at the substudies within the research program and were interested by the clinical qualitative study as it looks at facilitators and barriers to organ donation. Could you expand on this substudy?
Dr. Meade: This substudy is led by an ICU physician at Hamilton Health Sciences (HHS). It is a mixed method study where he started with an analysis of all the institutional documents that have guided deceased donation in the ICUs at HHS. Next, he administered an email survey of ICU physicians, nurses and other clinicians to understand what they saw as facilitators and barriers to their work in deceased donation. The third part, which is the most interesting, is an interview study. With each newly consented deceased donor in the ICU, a research coordinator working with this investigator identifies the physicians, nurses, social workers, etc. involved in the care of that particular donor and reaches out to them for an interview. They solicit clinicians’ perspectives about the care that we provide to deceased donors and their families; what works well, what could be better, what the obstacles are, and all sorts of interesting themes have emerged from these interviews. We can learn from this to improve deceased donation procedures for staff and patients’ families in our ICU and publish this so that others can learn from it too.
The DONATE study is strongly focused on deceased donation. Would you be able to expand on why this is the focus compared to live donation?
Dr. Meade: There are about as many deceased donors as there are live donors in Canada, but deceased donors can donate up to 8 organs, so the vast majority of organs for donation come from deceased donors. As a clinical researcher, my focus of research stems from my own clinical care. In the ICU, we care for deceased donors. There is live donation underway in Hamilton but that’s outside of my realm. There’s also deceased donation in the context of medical assistance in dying (MAID). HHS has recently implemented deceased donation in the context of MAID, and I understand that it went well. We will be debriefing as there are undoubted important lessons we can learn to do better next time, but that’s a whole other area of important research.
What do you think is the greatest barrier to implementing an effective organ donation system?
Dr. Meade: There are two barriers. One is the lack of standardization nationally. If we can set standards that everyone needs to uphold, then that will dramatically improve the effort and resources that will go into deceased donation. The other barrier is the culture of donation. More than 90% of Canadians surveyed support the notion of deceased organ donation, yet only 25% have registered themselves as deceased donors. Of those who register themselves, only 2-4% are ever in a position to be a deceased donor, and when they are, 15-25% of the time their families will veto that. That’s a problem with the culture of donation. There are more physicians than general community members who have registered themselves as donors – roughly 25% of Canadians and 43% of Canadian physicians have registered themselves. Another issue that I’m getting a sense of is that physician acceptance of deceased donation for their patients in the ICU is sometimes a barrier. Improving acceptance and the culture of donation among healthcare providers will help because we are ambassadors for deceased donation. Physicians and nurses who work in an ICU that sees a low volume of deceased donation may not be as comfortable with addressing the issue of donation with families and managing deceased donors in the ICU, and they may shy away from it. Recently, ICU nurses shared with me that the management of a deceased donor is much more work than that for their usual patients. As healthcare providers gain more experience and understand the value, we can help to change the culture of deceased donation, which will help us to improve donation across Canada.
How can people get involved with the DONATE study or support the organ donation system?
Dr. Meade: Register to be a donor on www.beadonor.ca. Since 90% of Canadians support the notion of organ donation, registering, which simply takes 2 minutes, is so easy. Also, let your family know if you want to be an organ donor. If everyone that reads this article speaks about this to their family, it would be a big step forward. Research can also always benefit from volunteers and donations, and the Trillium Gift of Life Network has a public outreach office where there is often space for volunteers. Learn more about this here.
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From speaking with Dr. Meade, we’ve been fortunate to learn more about the organ transplantation system and the importance of deceased organ donation. We are inspired by Dr. Meade’s passion to change the culture of deceased donation through her research efforts. We hope that this information inspires you to become involved with the organ donation system, whether that be through advocacy, donations, volunteering, or registration as a donor.
To read more about the DONATE study, visit their website.