UBCO professor says frontline nurses grapple with a good death amidst new end of life options
While Canada may have legalized medical assistance in dying in 2016, the moral challenges continue for primary care workers, including nurse practitioners who can legally assess eligibility for and provide assisted death.
UBC Okanagan Nursing Professor Barb Pesut is also a Canada Research Chair in Health, Ethics and Diversity. Much of her research has focused on improving palliative care for diverse populations and ways to improve the quality of life for seniors living at home with advancing chronic illness. More recently, she delved into the policy, practice and ethical implications of Medical Assistance in Dying (MAiD) for nurses. Today she discusses MAiD’s implications on Canada’s nursing professionals.
Your article in The Conversation states that medically assisted dying consists of many steps, including conversations with family and ‘normalizing’ the process. Can you describe how you can ‘normalize’ assisted death?
To understand how nurses normalize assisted death, it is important to understand how an assisted death is different from a normal death. In a MAiD death, individuals know the day and hour of their death, they go from life to death in a matter of minutes, and the procedure itself is highly medicalized.
For nurses, this stands in stark contrast to the typical death where people fade away over time, the moment of death is unpredictable and treatment is limited to alleviating symptoms. For nurses in our study, this process of normalization was an attempt to ensure that the goals of compassionate, patient-centred care remained the same across this different death.
For example, once the day and hour of a patient’s death was set, nurses worked tirelessly to ensure that patient had choices about what those final moments would look like. Where did they want it to happen, who did they want present, and what did they want to be doing in those final moments? Nurses normalized the rapidity of death by educating family extensively on what to expect and by staying present with them throughout the process. They had learned to de-medicalize the actual moment of death by creating rituals, by de-centring themselves as healthcare providers (what they described as making themselves “small”) and by hiding as much as possible the preparation and delivery of the medications. These strategies enabled nurses to apply some of the ideals of a ‘good death’ to this radical new end-of-life option.
Your recent research, But it’s legal, isn’t it? Law and ethics in nursing practice related to medical assistance in dying highlights the difference between law, ethics and morality. Can you briefly explain why it’s important to have clear lines between these three terms—especially when it comes to MAiD.
The question that haunts me is whether nurses have been sufficiently prepared to make an informed choice about their decision to participate, or not, in MAiD. There is a prevailing tendency to assume that what we make legal is de facto also right.
As professionals with a public trust, nurses certainly need to be cognizant of what is legal. But, they also need to do that hard moral work of determining, beyond the legalities, whether this is something that they can take part in without moral injury. Our data suggests that this is not an easy decision to make.
Historically, nurses have viewed themselves as patient advocates. Their raison d’être is to support patients in their pursuit of a healthy and whole life (and death). This can make it difficult for them to not support something that the patient chooses. Most nurses are employees of healthcare agencies and so their accountabilities also extend to their employers. There are examples in our data where refusing to take part in MAiD may influence their co-workers and their employment options. These two factors can make the choice to participate, or not, in MAiD a particularly difficult one.
Currently, there is a grey area regarding the eligibility criteria for an assisted death. Do patients need to prove they are end-of-life and who needs to see that proof?
This grey area is really the area of clinical judgement. The courts have recognized that many of the decisions related to the assessment of eligibility for MAiD are medical, not legal decisions. This has the potential to lead to quite a bit of variability in determining who is eligible and who is not.
Although many perceive MAiD eligibility to hinge on being at end-of-life, there is actually no criteria in the federal legislation that requires individuals to be at end-of-life. Further, the Superior Court of Quebec recently struck down the “reasonably foreseeable death” criteria, reinforcing the idea that those who are considering patients for eligibility in that province do not need to prove that someone is approaching end-of-life.
This is one of the reasons why nurses in our study found that this was such a different death experience. Some of those who were undergoing MAiD looked relatively well compared to those patients who they normally encountered at end-of-life.