As a MAID assessor and member of Dying With Dignity Canada’s Clinician’s Advisory Council, Valerie Cooper is a palliative care nurse practitioner (NP) who assesses patients for medical assistance in dying (MAID). From Kingston, ON to a small Texas border town, she’s cared for patients in diverse settings. In this two-part series, Valerie provides valuable insight into the experience of a nurse practitioner who understands the integrated nature of MAID and palliative care. This is Part 2 of a two-part series; you can read Part 1 by clicking here.
Nurse practitioners work in such varied settings and our role is so unique in that we see both sides of the gurney, the nursing and medical sides. Having those two viewpoints embodied within one individual can help streamline the process. We are experts at the things traditionally thought of as "soft things" – the emotional aspects of care, asking open-ended questions, and therapeutic relationships, but at the same time, we also have the medical expertise to address the questions about medications, procedures, discuss diagnoses, and options for care that are outside of the RN scope. I think there are opportunities for NPs to use both of these sets of values and skills in settings not only related to MAID, but also in relation to all diagnoses. It's hard because we work in such diverse settings to say something like, "all NPs will be able to do this or that procedure." It's very much setting-specific but NPs are innately, because of the career path we've chosen, able to meet the needs of patients who have chosen MAID at end of life. It's an interesting role that's continuing to transform, even in my relatively short 10-year NP career.
NPs in Ontario: Perspectives & challenges
The fact that Ontario was the last jurisdiction in North America to allow NPs to prescribe controlled substances, yet we are at the forefront of NPs providing MAID, is ironic. We finally get caught up and then we jump ahead! There's talk about NPs filling the gaps of a physician shortage, but I think it needs to be understood that we're not just physician substitutes – we provide this important viewpoint that may be different from what a physician can provide. I bring a different approach to my MAID assessments than many of my physician colleagues. Part of this is because of my background in palliative care, but also my background in nursing and understanding the importance of holistic care and of looking at a patient as a person.
It is so important to look at a patient as someone with multi-faceted influences, including their culture, family, and what is important to them in life. Having all of that inform my MAID assessments really contributes to what is essentially a therapeutic intervention for these patients and their families. Afterwards, I often feel like what I've provided isn't just an assessment of eligibility for MAID, but it's also an opportunity for that patient and family to work through some of the really challenging emotions and thoughts they're dealing with at this moment in their lives.
One big ongoing issue with regard to NPs and barriers to doing our work is the lack of financial compensation. At this time in Ontario, NPs cannot be paid to assess for and provide MAID outside of their employment. Because NPs cannot bill OHIP as physicians can, there is no way for NPs to be paid for MAID work unless they are provided compensation by their employer. There are NPs who are “independent practitioners” who do not work for any organization and who provide MAID because they believe in it, but this is a big barrier to other NPs entering into MAID work. This issue needs to be addressed in order to increase and ensure access. I am lucky in that I am able and supported to participate in MAID within my job, but not all NPs are, and many others would be willing and able to participate outside of their job if there was appropriate compensation.
Incorporating MAID into NP education
I teach at Queen’s School of Nursing, and one of the most anticipated classes of my eight-week elective course in Hospice Palliative Care Nursing is about MAID. It's an opportunity to discuss something that society has cast a shadow over by making it taboo. There aren’t many spaces where it’s safe talk about something like this and to share personal feelings. I've had the gamut of opinions from my students over the past four years I've run the course, from those strongly in favour of this option to students who were clearly conscientious objectors for religious reasons. The conversations and the respectful dialogue that we've been able to have because we have time dedicated to this, to helping them understand the nuances and their role in helping patients navigate their end-of-life choices, has been incredibly rewarding for all of us. One of the most useful parts has been helping the students understand that this isn't about them, it's about the patient. I completely appreciate that MAID is not for everybody, but when you choose to work in healthcare, you choose to support people who may be very different from you. We need to recognize this long before we're in a situation where we're confronted with something that makes us personally uncomfortable.
Valerie teaches an eight-week elective course in Hospice Palliative Care Nursing.
One of my students actually ended up working in palliative care, though he’d never considered it before taking the course. He’d also never really thought about medical assistance in dying until that week when I asked the students to expand on their thoughts about it in relation to palliative care on our on-line discussion board. His posting was so thorough and in-depth, and you could see him working through these dilemmas in his own head. He thanked me later for the chance to work through his feelings and thoughts in a safe place. With hard topics, it's really about opening up people's comfort level, and giving them the space to talk about hard things. Just the action of sharing and working through what's going on in your head is so powerful, even if nothing changes and you don't necessarily come to a conclusion.
The relationship between MAID & palliative care
I've alluded to this, but MAID providers and assessors and palliative care practitioners need to understand each other and why we're doing things the way we're doing them. If the palliative care traditionalists who see no role for MAID in end-of-life care could see that those of us who are assessing for and providing MAID are truly trying to provide a therapeutic intervention at every stage of engagement, I think it might help them to see a different side of MAID. I also think it’s important for those working in MAID to understand the beauty, learning, and growth that can occur during someone’s dying time and to realize why encouraging and supporting these opportunities is important for individuals and society. Sometimes there is a misunderstanding from other MAID assessors and providers that one of the reasons palliative care isn’t supportive of MAID is that it prematurely ends the dying process. There is a lot of learning by the patient, family members, and professionals who bear witness to the patient’s dying journey that we may not experience because it's being cut short. I guess people who aren't working in palliative care might not see that as being an issue, but we need to be aware that having less exposure to dying can further our death-denying culture.
We're all trying to raise the awareness and education around end-of-life care and trying to address the discomfort our society has talking about death and dying. There are so many parallels to the things we do. If we could look more at the similarities between the two and less at the disparities, and acknowledge that we're all trying to work towards the same goal, which is better end-of-life care for everyone in Canada, we could do so much more together instead of focusing on our differences. Let's look at the things we can incorporate into our individual practices, as well as the things we need to understand about why there is pushback, so we can move towards the goal of better end-of-life care for everyone.
Why do people choose MAID?
I think I’ve helped to increase understanding among our MAID providers and assessors who don't necessarily have a background in palliative care about where some of that pushback has come from on the palliative care end. It’s really comforting for people to know that they have somebody who is going to journey with them along this path, a path no one can predict. As a medical professional, I have knowledge of what's normal in the dying process and knowing this can help to alleviate some of the anxiety of those changes. Though what’s happening is very sad and upsetting, at least I can alleviate some of the anxiety by providing information about the normalcy of what is happening and why. For me, being honest about what I'm able to provide for patients is important. I often say, “I'm really good at managing pain, nausea, vomiting, etc., but I'll never be able to give you back the life you used to have.” Some people are able to find meaning and purpose in a life that is different than it was before, with support and encouragement, but some are not.
In my experience, that's often why people are choosing medical assistance in dying. Their life is no longer what it used to be; it no longer provides them the meaning and joy that they once had. All of those existential things that, for some people, it's just not feasible for them to accept, no matter what supports we can provide. For them to understand that I won't abandon them with regards to their symptom management, no matter what end-of-life choice they make, is a great relief. Who are we to judge someone for their choices and who they are as an individual? It comes back to that idea of choice: MAID is a choice for some people and it has nothing to do with me or my abilities to provide good symptom management or care. They're choosing MAID for the existential, individual reasons; it's those other things, those bigger questions.