Lauren Notini on Her First Year as a Fellow in Clincial and Organizational Bioethics

Lauren Notini

Since beginning the Fellowship in Clinical and Organizational Bioethics with the University of Toronto Joint Centre for Bioethics in October 2015, I have worked on numerous ethics-related projects and activities, and have had many rewarding experiences.


While in previous years the Fellowship has been one year in duration, I am in the incredibly fortunate position of being one of the first two Fellows to participate in the new two-year Fellowship program. Doubling the length of the Fellowship is advantageous, as it allows me to work at more rotation sites, spend more time at each site and, most importantly, gain additional experience working in healthcare ethics. Currently, the Fellowship involves working at six different rotation sites (most of which are located in downtown Toronto, but some of which are elsewhere in the Greater Toronto Area) for a period of approximately four months each. Some rotation sites are general teaching hospitals, whereas others are more 'specialized' - for example, in the areas of paediatrics, mental health, or community care – allowing for a breadth of rotation experiences and opportunities.


I am currently nearing the end of my second rotation working with Kerry Bowman, the ethicist at Mount Sinai Hospital. Before this, I completed my first rotation at the University Health Network (UHN). This rotation was actually comprised of three different 'mini-rotations', which was great, as it meant that I was able to work with three different ethicists at multiple hospitals that are part of UHN. During this rotation, I primarily worked with Kyle Anstey at Toronto Western Hospital (TWH), Barbara Russell at Toronto General Hospital (TGH) and TWH, and Daniel Buchman in the Multi-Organ Transplant Program at TGH.


The Fellowship and rotation sites offer a fantastic mix of activities that fall within one of four different 'streams' of ethics – clinical ethics, organizational ethics, research (including academic research on bioethics-related topics, as well as ethics review of research involving human participants) and teaching ethics.


During both of my rotations, I have been able to participate in multiple clinical ethics case consultations on various topics (including informed consent, capacity to make healthcare decisions, substitute decision-making, and conflict between various individuals involved in the decision-making process). Some of these consultations have been with healthcare professionals only, while others have involved patients and/or their family members. My role in the consultation process varies depending on the particular consultation, but may include helping to prepare for the consultation (e.g. by obtaining information regarding relevant healthcare legislation and reviewing existing peer-reviewed literature related to the consultation topics), reading the patient's medical chart with the ethicist before the consultation to gather information that may be relevant, documenting the consultation in the patient's chart following the meeting, asking questions during the consultation, and taking ethics consultation requests that come in over the phone. I also find myself constantly identifying the similarities and differences between how clinical ethics case consultation is practiced here in Ontario versus in my native Australia (for example, in terms of how often patients and/or their family members are present at these consultations and whether the consultation is conducted by an individual ethicist or a clinical ethics committee or advisory group).


In both rotations, I have also had the opportunity to further my organizational ethics experience through assisting in the development of new policies and guidelines and the revision of existing ones, including those relating to missed appointments, alternate level of care patients, living and deceased organ donation, refusal of blood products, medical marijuana and medical assistance in dying (MAID). I have also been able to build upon my ethics teaching experience through participating in, preparing for and delivering ethics teaching sessions to healthcare professionals at my rotation sites and to students at the University of Toronto. Teaching topics so far have included patient confidentiality and its limits, informed consent, capacity to make healthcare decisions, substitute-decision making, medical assistance in dying, the role of children’s assent and dissent in decisions about research participation, assisted reproductive technologies, and directed or conditional deceased organ donation. Throughout my rotation at UHN, I also sat on one of the research ethics boards as an observer, which allowed me to gain additional research ethics experience by reviewing informed consent forms and research protocols and observing how others do this. I am also assisting in organizing and facilitating an upcoming workshop on IVF funding in Ontario as part of my current rotation at Mount Sinai Hospital.


By far the hottest topic in clinical ethics in Canada right now is MAID (including active euthanasia), following the February 2015 ruling by the Supreme Court of Canada in Carter v Canada that competent adults who are experiencing intolerable and enduring suffering have the right to seek assistance in dying from a physician. I have had the opportunity to work on MAID-related initiatives in both of my rotations, and have sat on various MAID committees and working groups. This has been a particularly eye-opening experience for me, especially coming from Australia where MAID is currently illegal in all states and territories. I have appreciated having the opportunity to see how different healthcare organizations and ethicists are approaching MAID and suspect this will continue throughout my future rotations.


In addition to the hands-on training we receive during rotations, Wednesdays are devoted to participating in various Fellowship activities ('JCB Wednesdays'). Fellowship activities vary each Wednesday, but include: self-directed reflective practice sessions, where my fellow Fellow, Ruby Rajendra Shanker, and I discuss our experiences at our rotation sites and reflect on the role(s) of an ethicist; attending Clinical Organizational Research Ethics (CORE) Network sessions, where ethicists may present on a particularly challenging case they have consulted on or a specific topic related to healthcare ethics; core competencies sessions, where we work on the core skills and knowledge required for healthcare ethics consultation (e.g. conflict resolution skills, knowledge about privacy as it pertains to clinical ethics case consultation), as identified by The American Society for Bioethics and Humanities, sometimes with guest presenters; and co-chairing the weekly JCB Bioethics Seminar Series, which feature a variety of speakers and bioethics-related topics. Attending the JCB on Wednesdays also allows us to meet and learn from fellow members of the JCB community and visiting scholars.


The Fellowship also contains an academic research component. In between rotations, there are designated 'research blocks' for us Fellows to conduct research on an aspect of practicing ethics in the healthcare setting. The research topic I have chosen to focus on is incidental findings that may emerge in the work of an ethicist (these findings are 'incidental' in the sense that they are not directly related to the reasons the case was originally referred to the ethicist for consultation), and the challenges such findings may pose for ethicists (e.g. they may be concerned that disclosing such findings may affect their professional relationship with the referring healthcare professional, or lead them to be negatively perceived as the 'ethics police'). I had the opportunity to present and obtain feedback on this work in progress as part of the JCB seminar series, and plan on submitting the revised piece for publication in an ethics journal.


As part of the Fellowship, I am also completing a longitudinal experience project with Daniel Buchman on the ethical issues associated with solid organ transplants for individuals with current or previous substance use issues. I began working on this project during my first rotation at UHN and by continuing to work on it throughout the Fellowship, will have the opportunity to hopefully see the project through to its final stages. As part of this project, I am currently assisting in conducting a scoping review of the existing literature on this topic, which we plan on later submitting for publication.


In my mind, one of the most valuable aspects of the Fellowship is the opportunity to work with different ethicists at a variety of rotation sites. They may have different professional backgrounds (e.g. in medicine, philosophy, nursing, law, theology, or social work) and different approaches to practicing healthcare ethics – for example, some ethicists may consult with patients and/or families routinely, whereas others may never do this or only do this in certain circumstances. Others may also have different approaches to the ways they document ethics consultations. I have learnt that no two ethicists are the same, and observing different approaches to healthcare ethics consultation is extremely beneficial from a learning perspective.


Entering the Fellowship directly from a PhD, where I had the luxury of having four years to work on a single project, I am also gradually appreciating and adjusting to the fast-paced nature of healthcare ethics. There are often many projects and responsibilities to juggle, each with tight deadlines. While this can be challenging at times, the flipside of this is that meeting these deadlines is incredibly rewarding. For example, in my first rotation at UHN, I co-taught on the topic of directed or conditional deceased organ donation, where the family specifies which recipient or group of recipients they want their loved one’s organ(s) to go to. This was a topic I knew nothing about before beginning the Fellowship, and I only had a relatively short time to prepare for the teaching session. However, the teaching session went very well and now I feel comfortable discussing this topic.


Another important aspect of practicing ethics in the healthcare setting is that no two days are the same – there is generally no typical day in the life of a bioethics Fellow or ethicist. The plan at the beginning of the workday may radically shift, depending on what comes up (e.g. urgent consultations, unexpected meetings). Priorities may therefore need to be re-shifted, and this requires being flexible. The upside to this is that the unpredictable nature of the work keeps me on my toes and there is never a dull day!


On a personal note, everyone I have worked with in the JCB community and at my rotation sites has made the process of relocating to Toronto from Melbourne, Australia a smooth and pleasant experience (although I must admit adjusting to the Canadian winter was a challenge!). Everyone has been so welcoming and supportive, and are not only willing to share their knowledge and experiences working as an ethicist with me, but have also been forthcoming with many recommendations for sightseeing and places to eat in Toronto.


I am very grateful to be a part of the Fellowship and am confident that my experiences to date during the Fellowship and the many experiences that are to come will allow me to build upon the core skills, knowledge and traits that are required to work as a successful ethicist, whether that be in Canada or internationally. For anyone who is thinking about applying for the Fellowship, I highly encourage you to do so.


In short, the past eight months have been intellectually stimulating and rewarding and have gone above and beyond my hopes and expectations walking into the Fellowship. I am very much looking forward to seeing what the remainder of the Fellowship has in store.