Spotlight paper in The Journal of Liver Transplantation: Dr. Suze Berkhout
The CDTRP would like to congratulate Dr. Suze Berkhout, clinician-investigator and psychiatrist at University Health Network, for her publication entitled “Obligation and the “Gift of Life”: Understanding Frictions Surrounding Advance Care Planning and Goals of Care Discussions in Liver Transplantation” recently published in The Journal of Liver Transplantation! Our Communications Manager, Stéphanie Larivière, asked Suze a few questions about it that you can read below.
What led you to this non-traditional type of research?
My research training and background are very interdisciplinary, using ethnography and narrative methods to carry out work in feminist science and technology studies and philosophy of medicine. I became interested in using these sort of approaches through my work in philosophy. I wanted to understand how medicine as a field “thinks” about problems and issues in different populations, and use methods that could examine how a biomedical worldview (and the practices that go along with it) can be both incredibly powerful tools for solving problems while at the same time narrowing or constraining how that problem is constructed. In philosophy, this sits at the intersection of what’s called epistemology (theories of knowledge) and ontology (theories of what makes up the world). When I was a graduate student in philosophy I started reading work by Annemarie Mol, Ian Hacking, Bruno Latour, Donna Haraway – people who all, in their own way, are thinking about the way that our practices and ideas and what we actually experience in the world simultaneously shape each other. This really goes against the idea that we simply describe things as we discover them; we don’t just “carve up the world at its joints” when we do research. Our ways of knowing things actually shape the things that we aim to know. So my program of research is all about exploring this more fully, as a way to try to know things differently.
What recommendations would you make to researchers from the donation and transplantation communities to deepen and broaden their horizons on different perspectives like these?
It’s important to have the right method for whatever your research question is. Using ethnography or the arts as a research method can’t tell us about things like incidence or point prevalence or causal mechanisms. But it can do a really good job at exploring meanings, engaging with the senses and emotions, and for looking at the ways that structural, institutional, and cultural issues intersect with individual experiences to shape a phenomena. Sandra Harding has a paper I really like (an older one now!) where she talks about what she calls “strong objectivity.” The idea here is that there is no purely objective stance, no “view from nowhere,” and so we need to have multiple, partial perspectives – lots of different standpoints – if we’re going to understand complex phenomena and experiences. I like the think about the kind of research I do as one standpoint that contributes to a wider view of an issue by offering a lens or perspective.
How could the CDTRP support the future directions of this work?
We are so excited in my research group to be expanding our work with the support of the CDTRP through the recent innovation grant competition. In addition to taking a leap to support work that uses unfamiliar methods, the CDTRP is amazing for the networks of collaboration that are possible within it. I think that’s one of the most important things for the sort of work I’m helping to lead – strong collaborations across groups of people who themselves are at different positionalities and standpoints. Researchers, experts with lived experience, clinicians, artists – all of us from different perspectives, backgrounds, and with different life stories that shape how we know. Working together means being open to understanding and thinking about things through a frame or lens that is unfamiliar, and learning with each other through that. We can draw on each others’ knowledge and standpoints to innovate how we study things and what knowledges come from that.
Abstract
Purpose
This article examines the contradictions at play in advance care planning and goals of care discussions in liver transplantation settings. Focusing on code status, we ask why these important conversations are controversial in the transplant context, and why “full code” is the norm for those listed for liver transplantation.
Basic Procedures
This article uses a composite case comprising the authors’ clinical experiences to examine the frictions that surround advance care planning in the context of liver transplant. The authors situate this composite case to related ethnographic and liver transplantation literature.
Main Findings
Our experience of difficulties for clinical teams in reconciling patients’ requests for a do not resuscitate order with their commitment to liver transplantation is borne out in the liver transplant literature in this area. We argue that the high expectations of patients, families, the treatment team, and society in relation to transplant translate into an obligation for patients to have full code status for their desire for transplantation to be recognized fully. We relate this analysis to work on the “transplant imperative” Santivasi et al. describe.
Conclusions
Solid organ transplant is often represented as a “cure” or “new beginning.” This future-orientation of solid organ transplantation is incorrectly considered at odds with patients’ request for do not resuscitate orders. Challenging the norms embedded in notions of cure can afford patients to greater agency over their lives and bodies, while affirming that disabled lives are valued.
About Dr. Suze Berkhout
Dr. Suze Berkhout is an early career clinician-investigator and practicing psychiatrist. Her program of research in feminist philosophy of science/Science and Technology Studies utilizes ethnographic and narrative qualitative methods to explore social and cultural issues impacting access and navigation through health care systems. Within this work she focuses on the importance of lived experience in relation to knowledge in/of medicine, and related to mental health especially. She carries out this work in diverse populations, including in treatment resistance in mental health, early psychosis, transplant medicine, and Placebo/Nocebo Studies. Through the COVID-19 pandemic she has also been involved in the development and evaluation of mental health supports to health care workers. Her transplant-related research examines the challenges that span the process of solid organ transplantion, from waitlisting and psychosocial assessment, to adherence to medical advice, to long-term survivorship and graft failure, and uses arts-based approaches and ethnography to understand how social, cultural, and biological issues come together in these areas, and their impact on patients, support persons, and clinical teams.
Suze is also one of the winners of this year’s CDTRP Research Innovation Grant Competition for her project entitled “Temporalities of Cure: A qualitative study of psychosocial support needs and long-term survivorship in liver transplantation.” Learn more here.
ity of Alberta and has received training in patient-oriented research through the University of Calgary’s PACER (Patient and Community Engagement Research) Program. He is the Patient, Family, and Donor Partnerships & Education Manager with the Canadian Donation and Transplantation Research Program. In this role, Manuel builds relationships patient partners with investigators and strengthens capacity among CDTRP patient partners.
Anders Billström 
Gareth Wiltshire
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Sherrie Logan 
born and raised in Edmonton, AB. With a degree in Music Performance (saxophone performance) and Education, Lindsey has taught for over a decade in the Edmonton Public School system. When she is not teaching, she is very involved in the music community, performing in the Edmonton Winds, conducting her own community ensemble (The Beer League Band) and on numerous musical boards across the province. For the past 5 years, Lindsey has had to take a break from teaching after having her amazing son, George. Maternity leave did not goes as expected as George was diagnosed with Dilated Cardiomyopathy at 5 months old and required 2 heart transplants before the age of 4. During this time, Lindsey has also began to dedicate her time building and expanding her charity: Big Gifts for Little Lives, where they raise money to fund Pediatric Heart Transplant research at the Stollery.
Dr. Caigan Du is a scientist at the Vancouver Coastal Health Research Institute and an assistant professor in the Department of Urologic Sciences at the University of British Columbia. He received a Ph.D. degree in Biochemistry in UK and postdoctoral training in Immunology in USA. He is interested in the pathogenesis of kidney ischemia-reperfusion injury and transplant rejection, and molecular control of urinary malignancies. He has been studying the impact of kidney donor-derived factors on renal allograft rejection, and the molecular pathways of kidney injury and regeneration in experimental models. He is also interested in developing medical solution including drugs made from natural compounds for all kinds of health problems, including immune disorders, organ preservation, kidney failure and urinary cancer. He is the PI of many grant supports from the Kidney Foundation of Canada and the Canadian Institutes of Health Research.
Heather Badenoch is a non-directed living liver donor and communications strategist. As the president of Village PR, she provides strategic communications direction and training to not-for-profit clients in community and health. An active transplant volunteer, Heather helps transplant candidates find living donors by running their public appeals, small and large, pro-bono. She also mentors potential living donors on the path to living donation. Heather is a volunteer with the UHN Centre for Living Organ Donation and the Canadian Donation and Transplant Research Program. She and her spouse adopt rescue dogs and volunteer together with Community Veterinary Outreach, a group providing free veterinary care to the pets of people who are homeless.
Sean Dicks is a clinical psychologist who has 20 years’ experience supporting both families of organ donors and transplant recipients. While it is rare for him to have contact with a donor family and recipient linked to the same organ donation-transplantation event, his contact with families who have lived experience with organ donation on the one hand, and patients who have received transplants on the other hand has provided opportunities to explore how their journeys become linked when they attempt to make sense of and find meaning in their respective crises.
Terri Hansen-Gardiner is a Cree speaking Metis woman from Northern Saskatchewan as well as a 10 year Breast Cancer Survivor. Her tireless spirit and dedication to her community is undeniable. Terri is a cancer survivor who travels around the province to provide assistance, information, and support to Indigenous patients who are trying to access and navigate the cancer care system.
Dr. Golnaz Karoubi is Assistant Scientist at the Toronto General HospitalResearch Institute and principal investigator in the Latner Thoracic Research Labs. She currently holds an Assistant Professor appointment in the department of Laboratory Medicine and Pathobiology and a cross-appointment in the department of Mechanical and Industrial Engineering at the University of Toronto. Dr. Karoubi received her PhD in Applied Science and Engineering at the University of Toronto and joined the Lung Regenerative Medicine Program in the Department of Clinical Research in Berne University, Switzerland for a post-doctoral research fellowship. She stayed on as a Group Leader in 2008 to direct the basic and transitional science as related to Cancer Stem Cell and Lung Regenerative Medicine in the Department of Biomedical Research at the University of Berne until 2012. In early 2012, she joined the team of Dr. Tom Waddell at the Toronto General Hospital Research Institute as a Senior Scientific Associate and was appointed to Assistant Scientist at the Toronto General Hospital Research Institute (University Health Network) in November 2019 and to Assistant Professor in the Department of Laboratory Medicine and Pathobiology in July 2020.
Dr. Haykal graduated from the University of Ottawa Faculty of Medicine in2007 as class valedictorian and silver medalist, and subsequently completed her residency training in Plastic and Reconstructive Surgery at the University of Toronto in 2016. During her residency, she completed a four-year Doctorate of Philosophy (PhD) in tissue engineering, regenerative medicine and immunology with a focus on tracheal reconstruction. She obtained numerous grants and awards including a CIHR Vanier Scholarship. Dr. Haykal then pursued fellowship training in microsurgical reconstruction at the Albany Medical Centre in New York. Dr. Haykal joined the University Health Network and the Toronto General Hospital in 2018. Her clinical focus is on complex oncological reconstruction and microsurgical reconstruction of the breast, head and neck and extremity. She started a lymphedema program in 2019 where she offers microsurgical techniques for the treatment of lymphedema.
Dr. Ahmed is a Professor in the Cumming School of Medicine at the University of Calgary. The recipient of the 2022 Hypertension Canada Senior Investigator Award, she is a nephrologist and clinician-scientist with a focus on sex and gender differences in human cardiovascular/kidney physiology and clinical outcomes. Dr. Ahmed is the Vice Chair (Research) for the Department of Medicine, Lead of the Libin Institute Women’s Cardiovascular Health Research Initiative at the University of Calgary and Lead of the Alberta Strategy for Patient Oriented Research Capacity Development Platform. Dr. Ahmed is an Advisory Board member for the Canadian Institutes of Health Research Institute of Gender and Health, a member of the Canadian Medical Association Journal Governing Council and the President-Elect for the Organization for the Study of Sex Differences.
r. Christopher Nguan is an Associate Professor at the University of British Columbia in the Department of Urological Sciences, Surgical Head of Kidney Transplantation at Vancouver General Hospital and the Director of the Surgical Technologies Experimental Laboratory & Advanced Robotics (STELLAR) facility at Vancouver General Hospital.
r Caroline Lamarche is a clinician scientist and transplant nephrologist at Maisonneuve-Rosemont Hospital. She is an assistant clinical professor at the Université de Montréal. After her nephrology training at the Université de Montréal (2015), she completed a Master degree on the use of adoptive immunotherapy to treat/prevent BK nephropathy in kidney transplant recipients. She then pursued a post-doctoral fellowship with Dr. Megan Levings at the University of British Columbia on the use of chimeric antigen receptor (CAR) regulatory T cells (Tregs) to induce transplant tolerance. Her lab is working on the development of adoptive immunotherapy in nephrology and understanding Treg dysfunction.
Dr. Tandon is an Associate Professor of Medicine, Co-Director of the Cirrhosis Care Clinic, Transplant Hepatologist and lead of the Cirrhosis Care Alberta quality improvement program. She obtained her training at the University of Alberta, the Hospital Clinic in Barcelona and Yale University. Her clinical practice and research are focused on cirrhosis with research interests including cirrhosis related complications, malnutrition, frailty, exercise therapy, palliative care, integrative health approaches such as meditation and knowledge translation. It is her career goal to provide wholistic, interdisciplinary, evidence based, patient-centered care through education, empowerment, engagement and team-work.
Emily is a PhD student at the University of Alberta, where she completed her Master of Science (MSc) degree in medicine. With a passion for patient-oriented research and a commitment to improving health outcomes, Emily’s doctoral project focuses on EMPOWER, a 12-week online mind-body wellness program designed for adults living with chronic health conditions.
Dr Basil S. Nasir, M.B.B.Ch
Dr. Victor Ferreira is an Assistant Scientist in the Ajmera Transplant Centre at the University Health Network (UHN) and the Toronto General Hospital Research Institute (TGHRI). He is also an Assistant Professor at the University of Toronto in the Department of Laboratory Medicine and Pathobiology (LMP). He completed his PhD in Medical Sciences – Infection and Immunity Specialization at McMaster University in 2014 and post-doctoral training at UHN. His research program is focused on three pillars: I) using systems vaccinology to reveal insights into vaccine responses in immunocompromised individuals like transplant recipients; II) characterizing the impact of chronic viral infection on host immune responses; and III) developing novel methods for eliminating latent viruses in human organs. His work has been cited >2,500 times and is published in journals including the New England Journal of Medicine, Nature Immunology, the Lancet Infectious Diseases, Clinical Infectious Diseases, the American Journal of Transplantation and Journal of Infectious Diseases.