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.
Read the full paper here.
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.
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.
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.
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.
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.
Read the full paper here.
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.