Since federal legislation in June 2016 made Medical Assistance in Dying (MAiD) a legal health care option in Canada, patients and health care systems have been learning a lot about what this new practice implies, and what we need to know as a society to ensure that it is managed well. As of the most recent interim report, covering the period to Oct 31, 2018, 6,700 Canadians had availed themselves of this option, the vast majority administered by physicians or nurse practitioners.
All signs are that the practice is continuing to grow.
While much of the press attention has been on the specific acts of eligibility assessment and administration, nurses know that there is much more involved in supporting patients and families toward a positive end of life process. Much of the media discussion has been contentious and hotly debated, creating a polarization between advocates and those who express caution or concern. Unfortunately, this debate tends to pitch the message of heroic patients and their family, friends and health care team supporters who take control over what might otherwise have been a protracted or “undignified” death. By contrast, the debate portrays those individual clinicians or health care facilities for whom assisted dying is problematic – often for reasons that are faith-based – as standing in the way of patient autonomy and equitable access to legalized services. But this public debate between champions and opponents is creating very real risks for those caught up in complex decision-making processes. And often, nurses are the health care professionals most closely positioned to witness these complexities and support processes to manage them.
What we know from early studies interviewing nurses about their experiences with MAiD is that the process involves so much more than simply assessment and administration – both of which are often done by providers who are not themselves involved in the everyday care of the patients and families. We know that decisions around preferences and wishes surrounding the end of life can involve multiple conversations and reflections over months and years, and that the process of surfacing and understanding one’s values and communicating them to those concerned is very much a process rather than an event. It is not unusual for perspective to change over time, so that what is intolerable in one context may be more tolerable at a different stage. We know that new angles of consideration can arise with dialogue and discussion between patients, their families and friends, and their health care professional providers. What nurses know is that a MAiD decision is not simply an issue of patient autonomy, but a decision that arises in the context of relationships. And in those relationships, the conversations that patients have with those involved makes a tremendous difference not only to their decisions with respect to seeking the right to enact MAiD, but also in the planning toward end of life. Not all patients who ask questions about MAiD are seeking assessment to determine their eligibility. And not all patients deemed eligible will seek to enact it. Conversations that occur over the sometimes protracted journey toward end of life decision making can make a significant difference to patients’ decisions regarding MAiD and to their consideration of other options that might support their quality of life until death naturally occurs. They may also lead nurses to active advocacy on behalf of their patients for access to appropriate palliative care services to ensure that patient decisions are never made on the basis of assumptions of inadequate alternative care.
While RNs in BC may not “direct or counsel clients to end their lives,” they do respond to patient questions or requests with professionalism and non-judgmental respect, and support patients to enact their cultural and spiritual needs and wishes, and oversee the management of “high quality, coordinated and uninterrupted continuity of care” throughout the process.
https://www.bccnp.ca/Standards/RN_NP/RNScopePractice/MAiD/Pages/Default.aspx. What this typically means is that nurses working with patients at any point along the trajectory from the first tentative questions through to enactment and bereavement are an inherent part of the MAiD process. Nurses report that it is not uncommon for patients to vacillate in their decision around assistance in dying, or experience uncertainty along the path from the decision to the conclusion. Once eligibility has been determined, that path entails healthcare providers and patients orchestrating of the best death experience possible; this may involve intricate conversations around timing, place, attendees, scheduling final conversations, or leaving legacy letters or messages. However, once that orchestration has begun, it may be difficult for patients to feel they have the right to change their mind. And nurses may be the ones closest to those expressions of hesitation or doubt. What we hear from nurses is that patients don’t simply make their decision and then stick with it on schedule. In many instances, they want to revisit their motivations and reasons, and seek assurance that they have thought through all of the relevant implications so that they are taking a course of action that is the best for all involved. This comprehensive envelope of care from the beginning of MAiD considerations through to the conclusion of orchestrating a good death and supporting family bereavement falls much of the time to the nurses.
What we have learned from the nurses most involved with this care is that MAiD deaths can be beautiful experiences or they can go badly. In many cases they are deeply impactful, both positively and negatively, depending upon the perspectives of those involved. And nurses feel enormous pressure to ensure that they always go well and to attenuate impact. At this point, we do not have sufficient evidence to have developed comprehensive “best practice” guidelines for MAiD, so many nurses are figuring it out on their own or in dialogue with their colleagues. Where they have support from their nursing and health professional team colleagues, we know that greatly enhances the process. Where there are tensions within the team, including conflict between those who choose to participate and those who do not, nurses on either side can be left with considerable moral distress. It is very clear, even at this early stage, that effective and strategic nursing leadership plays a vital role in creating the conditions for effective nursing practice around MAiD. Where such leadership is absent or ineffective, nurses struggle to do their best, and if that best is not good enough to ensure quality care, they experience a dangerous moral residue. This work taxes nursing skills in every way – relationally, ethically, technically, and creatively. And there is a tremendous need for conversation within nursing to ensure that nurses are optimally positioned to support patients and families through every stage of this new world of end of life care.
Over the coming months and years, the evidence base will expand to better inform us as to how nurses can best support patients, and how care systems can best support nurses and patients. In the meantime, we must ensure that nursing perspectives are surfaced and heard in the public dialogue, and that our profession shows leadership in ensuring that Canadian patients facing end of life decisions are optimally served.
Additional reference sources:
Pesut, B., Thorne, S., & Greig, M. Shades of grey: Conscientious objection in medical assistance in dying. (2019) Nursing Inquiry Published online July 4, 2019. doi.org/10.1111/nin.12308.
Pesut, B., Thorne, S., Greig, M., Fulton, A., Janke, R., & Vis-Dunbar, M. (2019) Ethical, policy, and practice implications of nurses’ experiences with assisted death: A synthesis. Advances in Nursing Science, 42(3) 216-230. doi: 10.1097/ANS.0000000000000276
Pesut, B., Thorne, S., Stager, M.L., Schiller, C., Penney, C., Hoffman, C., Greig, M., & Roussel, J. (2019) Medical assistance in dying: A narrative review of Canadian nursing regulatory documents. Policy, Politics and Nursing Practice, Published online May 6, 2019. doi/10.1177/1527154419845407.
Pesut, B., Greig, M., Thorne, S., Storch, J. Burgess, M., Tishelman, C., Chambaere, K., Janke, R. (2019) Nursing and euthanasia: A narrative review of the nursing ethics literature. Nursing Ethics. Published online May 22, 1-16. Doi:10.1177/0969733019845127.
About Barb Pesut
Barb started her nursing career in 1982 working at BC Children’s hospital in oncology. Those early experiences of watching children’s dying trajectories profoundly influenced her understands of suffering in the context of clinical care. She went on to do clinical care in rural nursing, intensive care, and post-anesthetic care. After working as a hospital-based clinical nurse educator, Barb decided to pursue a career in nursing education. She completed her MSN and PhD in the UBC School of Nursing. She is currently a Professor in the School of Nursing at the University of British Columbia, Okanagan and holds a Canada Research Chair in Health, Ethics, and Diversity. Her program of research focuses on palliative care for diverse populations.