POLICY DISCUSSION: Using Nursing Insights to Inform the MAiD Conversation by Barb Pesut, RN

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.

2 thoughts on “POLICY DISCUSSION: Using Nursing Insights to Inform the MAiD Conversation by Barb Pesut, RN

  1. Sally Thorne

    Jeffrey, I so very much appreciate your thoughtful comments about the complexities involved.
    Absolutely I would agree that from a nursing perspective, it is all about having a choice, and ensuring that this is a fair and meaningful choice, never a defaut position because our care system failed to provide adequate support. You may be interested in the interview done by Dr. Brian Goldman (White Coat/Black Art) rebroadcast this week on CBC radio. In this, Elizabeth Rathbun, who has advanced MS, beautifully depicts the complexity of what she calls that individual “line in the sand” – the point beyond which MAiD would be a preferred option rather than continued living. And nurses know how individual, dynamic, and evolving that line in the sand can be. It is our relational care skills and our intimate ongoing engagement with patients and families that allows us access to these nuances of care and illness processes, and allows us to be vitally important patient advocates – in either direction.

    Here is a link to the interview with Elizabeth Rathbun.
    https://www.cbc.ca/radio/whitecoat/life-with-ms-challenges-losses-but-also-purpose-and-deep-joy-1.5011270

    Reply
  2. Jeffrey Brooks

    Excellent article. Thank you for this.
    Yes people change, priorities change esp at the end of life.
    My dear friend Noreen Campbell RN said she’d be “done” (i.e. ready for MAiD) when she needed oxygen 24/7. For her that was her ‘line in the sand’. Her life would no longer be worth living.
    When that day came, she said it really wasn’t that bad. O2 provides comfort. Made her very difficult breathing easier. So she, she alone decided to continue living and drew another line in the sand.
    Important to note Noreen was approved for MAiD in AUG 2016. She met all of the criteria. She chose to die on JAN 12, 2017.
    I can never support advance requests for MAiD. Noreen is an example of when the worst happens, it’s no longer the worst. It’s not that bad. Besides the Netherlands has AR and it isn’t used. There were 2 cases in 2018, 3 in 2017. The clinician must know 2 things: The person had no reason to have changed their mind and they are suffering unbearably. Very difficult. So they don’t do it.
    So we do make choices. We do get to change our minds and must be allowed to change our minds.
    A bit of background, I was with each of my parents when they died, 1999 and 2001. Three days before Mother died (end stage OC) she asked her palliative care MD “How long do I have to wait?” “You won’t last the weekend.” (3-4 days) “That long?” We were fortunate to be able to support Mother with PC at home with nursing support as needed. Her MD just showed up that day to see how HER patient was doing and I guess, how we were doing caring for her.
    A few years after that, I trained as a palliative care volunteer and did that as a pet therapist for 8 years until my doggie died.
    In 2015, I was invited to be co-founder of DWDC Victoria Chapter. It was very busy until JUN 16 when we had C-14. After that, you are correct what we read in the news was mainly sad stories. I with the help of local volunteers took the Victoria Chapter in a different direction. I saw our role as educating the public. I came up with a presentation “Assisted Dying 101: The basics.” These were fun presentations.
    I quit the chapter in 2019 and have moved on. My latest presentation is “There’s more to end of life care than MAiD” As Noreen said, “Who is vulnerable? Not me. Anyone can see I’m grievously ill. No one would sell me life insurance. The ignorant are vulnerable.”
    It’s all about having a choice. Even if assessed and approved, you still have a choice. People need to know that.

    Reply

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