MAiD

Project Overview:

Canadian Nursing and Medical Assistance in Dying: Synthesizing Knowledge for Policy and Practice

Introduction

On June 17, 2016, amendments to the Canadian criminal code (Bill C-14) made it possible for nurse and medical practitioners in Canada to administer or prescribe a substance that results in death for eligible persons. This practice is referred to as medical assistance in dying or MAiD. Under Bill C-14, nurse practitioners may provide MAiD and registered nurses will play key supportive roles. In light of these developments, Canadian nursing policy and regulatory bodies have been working to construct frameworks to support nursing practice in the context of MAiD. This work will continue into the foreseeable future as provinces and territories develop additional legislation and policies. Synthesizing existing knowledge about nursing implications from other countries where MAiD is legal, and gathering empirical evidence about nurses’ experiences as MAiD is implemented in Canada, is critical to informing this ongoing development.

Purpose of the Project

The purpose of this CIHR-funded project (2017-2020) is to conduct a knowledge synthesis of the practice, policy, and ethical implications of MAiD for nursing from:

  1. empirical literature
  2. grey literature, and
  3. primary qualitative work.

In phase one, we will conduct a knowledge synthesis of the literature on nursing and MAiD.

In phase two, we will obtain an in-depth understanding of the distinctive social, moral, practical, and clinical implications of nursing involvement in MAiD in the Canadian context using a qualitative investigation of the experiences of Canadian nurses who have cared for patients receiving MAiD.

In phase three, we will synthesize this knowledge using meta-summary, meta-synthesis, and ethical reflection. Outputs will include practice recommendations, a policy analysis, and ethical resources to support nursing practice.

Project Goals

Evidence from this project will support the development of nursing practice, policy, and research toward the ultimate goal of providing high quality care to Canadians seeking MAiD.

For more information on this work, listen to Dr. Barb Pesut’s interview on Roundhouse Radio’s Middays with Jody Vance

How Can You Stay Up-to-Date on Our Progress?

As our study progresses, we will do our best to keep you informed and updated. As of August 2019, we have five articles available that are freely accessible online. All five of these articles are outputs from our first phase of research whereby we conducted a review of the literature on nursing and MAiD. You can access these publications on our website under the ‘publications’ tab. A webinar, hosted by the Canadian Nurses Association, outlining our study progress to date (October 15, 2019) can be found here. Research briefs, or summaries, of these articles are available below:

Research Brief #1

Nursing Regulation and Medical Assistance in Dying: An Overview

Medical Assistance in Dying (MAiD) has been a significant nursing issue on the Canadian landscape since its legislation in 2016. The Canadian Nurses Association was a strong advocate on behalf of the importance of the nursing role in MAiD. Canada was the first country to allow Nurse Practitioners to assess eligibility for MAiD and to provide the service should the individual be deemed eligible. Registered nurses, by virtue of their role as patient care providers, are also significantly impacted by MAiD.

After the MAiD legislation came into effect, it became the responsibility of the provincial and territorial colleges and associations that regulate nursing practice to provide guidelines to support the profession. As such, we were interested in the nature of those guidelines and how they compared across the nation. We conducted an internet search and gathered seventeen regulatory documents from all provinces and territories and analyzed them thematically.

The length of these documents varied widely from 18-54 pages. This in itself is an interesting finding for it speaks to the degree of guidance that individual regulatory bodies felt nurses needed. One province and one territory did not produce nursing-specific documents but rather discussed the role in nursing in the context of a multi-disciplinary team (i.e., alongside physicians, pharmacists, etc.). Within the 15 regulatory documents that focused on nurses and/or nurse practitioners, instructions around the legislation were congruent; however, the way that MAiD was positioned in relation to nursing varied. Four themes illustrated this variability: the relationship of MAiD to palliative care; nursing roles and responsibilities; safety alerts; and conscientious objection.

Relationship of MAiD to Palliative Care. The place of MAiD in palliative care continues to be debated in Canada. The debate is often hinged on a portion of the MAiD legislation that requires patients to be provided with the option of palliative care when they request, and are deemed eligible to receive, assistance in dying. However, accessibility to palliative care in Canada is limited which puts nurses in a challenging position. Several documents emphasized a close alignment between the nursing role in palliative care and the nursing role in MAiD, suggesting that the wish to die is not new, there is no need for end-of-life conversations to change and that nurses’ accountability to patients is unchanged.

Roles and Responsibilities of Regulated Nurses. There were common roles and responsibilities noted across the regulatory documents, all of which outlined the role of nurses in providing the “wrap around” care that occurs before the administration of MAiD and the bereavement care that is provided to families afterward. However, the degree to which the importance of this care was acknowledged varied by document. For example, while one document suggested that nursing would have a limited role, another document stated that the importance of the nursing role could not be overstated. Further, there was a paradox between emphasizing that legal restrictions placed on Registered Nurses during the act of medication administration while emphasizing the relational nature of nursing that places nurse at the centre of the process.

Safety Concerns. Regulatory bodies have an important role in protection of the public. As such, these documents highlighted the safety concerns that nurses should be aware of as they participate in MAiD. For instance, nurses were instructed to provide information to clients about MAiD, while ensuring that they do not counsel or encourage MAiD in any way (it is still illegal to counsel or encourage anyone to commit suicide). Some documents suggested that nurses needed to make sure that clients were asking specifically about MAiD and not simply expressing a wish to die. Nurses were also informed about other safety concerns such as only documenting the care that they provide and ensuring that they do not manage the medications that lead to death. In the case of patient self-administration, it was emphasized that certain actions, such as making the medication more palatable through mixing, could be perceived as administering the assisted death and thus had to be avoided. The specific concerns varied across documents; however, it was apparent in these documents that protecting patients and the legal liability of nurses was of paramount concern.

Conscientious Objection. The ability for nurses to conscientiously object to participating in MAiD – a right that is enshrined in the legislation – was described in all documents. However, it was interesting how the ability to conscientiously object was described. Some documents assumed that nurses had to opt-out of participating in MAiD, whereas others positioned participation in MAiD as something nurses could opt-in to. This subtle distinction is important. Whether the document assumed an “opt-in” or “opt-out” approach to nurses’ participation in MAiD, it conveyed an important cultural norm that may influence both patient accessibility and nurses’ moral decision-making. Some documents provided exercises that helped nurses reflect on their moral position in relation to MAiD. However, even if nurses choose to conscientiously object to participating in MAiD, documents emphasized the importance of upholding high quality, compassionate care that is in accordance with professional standards.

Nurses require substantial guidance to feel confident participating in MAiD. It is an act with an irreversible outcome that carries legal implications. Nursing regulatory associations from across Canada have provided this guidance in a way that reflects the unique context of each province and territory.

The article upon which this brief is based is available open access.

Pesut, B., Thorne, S., Stager, M.L., Schiller, C., Penney, C., Hoffman C., Greig, M., & Roussel, J. (2019) Medical Assistance in Dying: A review of Canadian Nursing Regulatory Documents. Policy, Politics and Nursing Practice. Advance online publication. Available at https://journals.sagepub.com/doi/full/10.1177/1527154419845407

Research Brief #2

A Literature Review on the Ethics of Assisted Dying from a Nursing Lens

Have you ever wondered about the arguments in support of or against nursing involvement in medical assistance in dying? As a research team, we were interested in the ethical questions related to assisted dying that nursing authors had asked and answered in the international literature. In this research brief, we will provide you with an overview of the questions these authors raised. For a complete discussion of the arguments, please see the publication listed at the end of this brief.

Despite the expansion of assisted dying internationally, our review identified only 43 articles, the majority of which were published in the United States between 1995 and 1998. Few articles were published in the last decade or were written from a Canadian perspective. In reviewing these articles, we placed them into four categories depending on the arguments that the authors used to discuss the acceptability and/or implications of assisted dying from a nursing perspective. These categories were the nature of nursing; ethical principles, concepts and theories; moral consistency; and the nature of the social good. In explaining these categories, we will first provide an overarching question that will help you to consider your own response to assisted death.

Nature of Nursing. Is there something about the nature of nursing that should influence the moral acceptability of an assisted death? In these authors reflected on the moral ontology of nursing (i.e., the essence of nursing); the unique relational space of nurses and patients; and the consequence of assisted death on nurses’ personhood and the profession. For example, compassion is an essential foundation of nursing. But what does a compassionate nursing response look like in the context of assisted death? Nurses are also direct witnesses of patients’ suffering, putting them in a in a unique relational space with their patients. This unique relationship may have implications for how nurses view the acceptability of assisted dying. Finally, there is concern that the position nursing takes on assisted dying may impact how the profession is viewed by society more broadly and how individual nurses experience their own practice. Articles in this category used the nature of nursing to argue both for and against assisted death.

Ethical Principles, Concepts and Theories. What ethical principles, concepts and theories should be used to better understand the moral acceptability of assisted death? Of the articles that discussed the ethics of assisted death from a nursing perspective, most used the biomedical principles of autonomy, beneficence, nonmaleficence, and justice to make their arguments. Arguments in favour of assisted dying tended to be framed by rights-based language (i.e., the right to die, the right to self-determination) and respect for individual autonomy. However, other authors used the principle of autonomy to highlight how other ethical principles can outweigh an individual’s right to self-determination. They argued that in some instances, non-maleficence (i.e., the duty to do no harm) is more important than unmitigated autonomy and that we must also consider the constellation of relationships that surround an individual and may be impacted by that individual’s decision to pursue an assisted death. Other authors argued from the perspectives of consequences, virtue, and relational ethics. Articles in this category used principles, concepts and theories to argue both for and against assisted death.

Moral Consistency. What are the differences, if any, between assisted death and other end-of-life practices that ultimately lead to death? In these articles, authors analyzed the ethical differences between assisted death and withdrawing/withholding treatment or allowing death. Several authors also examined the doctrine of double effect, which seeks to describe circumstances in which harmful actions are permitted in pursuit of a good outcome. In many of these articles, authors concluded that there was little ethical distinction between assisted death and other end-of-life practices that we know will ultimately lead to death and which are used and viewed as morally/ethically acceptable on a regular basis (e.g., withholding food or fluids).

Nature of the Social Good. What impact might assisted dying have on society in general? In these articles, authors examined the impact that assisted death could have on existing social issues such as vulnerable populations, perceptions of burden at end-of-life, fragmented health teams, cost containment, and poor public understanding of end-of-life care. For example, authors questioned whether legislated assisted death would put vulnerable groups, such as the elderly, women, the impoverished and the disabled at an ever-heighted risk for harm.

Whether nurses work in a context where assisted dying is legal, or in a context where it is still being debated, nurses have an important role to play in considering the ethical and moral implications of assisted dying for nursing practice. This research brief provides an overview of some of the arguments nurses can begin to consider. Most importantly, this set of articles challenges nurses to look beyond traditional biomedical ethics to other ethical questions and frameworks that relevant to the discipline of nursing.

A bibliography of the articles reviewed in the publication is available upon request to barb.pesut@ubc.ca

The article upon which this brief is based is available open access.

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. Advance online publication. Available at https://journals.sagepub.com/doi/full/10.1177/0969733019845127

Research Brief #3

Conscientious Objection in Medical Assistance in Dying: Considerations for Nurses

When medical assistance in dying (MAiD) was legalized in 2017, the rights of healthcare providers, including nurses, to conscientiously object was enshrined in the legislation. Nurses who choose not to participate in MAiD for reasons of conscience are required to inform their employers and to ensure continuity of quality care. Employer regulations typically stipulate the degree to which nurses can abstain from participation in MAiD. In some situations, transfer of care to another nurse is facilitated. In other cases, nurses are required to continue with regular care and are only permitted to leave the room when the medication to end life is being administered.

Evidence gathered from Canadian nurses’ experiences with MAiD have important implications for considering issues of conscientious objection. Early evidence seems to suggest that while some nurses strongly support or oppose MAiD, there are many more who are less certain. They take a “wait and see” approach and learn more about their moral positioning as they gain experience with MAiD. Amidst this uncertainty, professional nursing bodies have called for nurses to engage in moral reflection to ensure that their decision to participate, or not, is informed and deliberate. But how does one go about doing that? How can nurses do that informed, reflective work that is so necessary to conscientious objection? Here we present four factors and associated strategies that may assist you, as a nurse, when considering your own participation in MAiD: intuitive responses; relational impact; moral coherence; and the law and safeguards.

Intuitive Responses. A first step is to identify and honor your intuitive moral response to MAiD. This means that you should experience and reflect on that gut reaction you have when you first think about participating, or not, in MAiD. You can do this incrementally. Imagine yourself providing regular nursing care to a patient who has decided to receive MAiD. Imagine you are starting the IV. Imagine you are present during the procedure to provide support to patients and their families. Finally, imagine that you are an NP, and you are giving the medication that will end life. Then imagine the opposite scenario. Imagine that you decline to participate in MAiD. Imagine what it will be like to absent for this final moment. Imagine how you will feel, and how the patient will feel, as you turn over their care to someone else. By thinking through these levels of participation you may get a sense of where your initial comfort lies. But it is important to not stop there as these intuitions are just the starting point for moral reflection. To do this work well, you should be reflecting on that intuition and testing it through reasoning, through imagining, and through conversations with others, particularly those whose moral stance differs from yours. We can begin this reflective process by imaging the effect of participation, or not, on our relationships.

Relational Ethics. Relational ethics are those ways in which we interact with one another toward the good. The effect of participating, or choosing not to participate, in MAiD influences nurses’ relationships with patients, colleagues, significant others, and the community. How nurses perceive their professional relationship of nursing care is an important consideration with regard to conscientious objection. Do you see that relationship as one in which you stay alongside patients regardless of your agreement/disagreement with their choices? Or is your relationship of care one in which your continuing level of involvement depends upon the choice patients make? This choice may be even more difficult in areas of practice where you have long term relationships with patients. For example, in rural communities where nurses’ professional and personal roles are unavoidably linked, participation or conscientious objection to MAiD may be even more complex. If you choose to participate, community members who are opposed to MAiD may be reluctant to receive healthcare from you. If you choose not to participate, it may be difficult for patients to access MAiD if there is a shortage of other healthcare providers willing to participate in the community. It is important to note that if you do feel the need to withdraw from care that you do so without communicating disapproval or judgement. It is good to think of how you might communicate your withdrawal in such a way that the patient’s dignity and well-being is guarded. Regardless of a nurse’s decision related to MAiD, it is profoundly social in nature with often far reaching impacts.

Moral Coherence. Another factor to consider is how your decision to participate, or not, in MAiD is coherent with other decisions you make in the context of care. For example, how do you feel about other practices that have the potential to hasten death such withholding food/fluids or providing large doses of medication to alleviate pain. Good nursing practice is often directed by a particular outcome such as quality of life and the alleviation of suffering. It is useful to ask yourself if there is a difference between hastening death by withdrawing treatment and administering a medication that causes death when the outcomes are the same. If you are morally comfortable with traditional methods of hastening death but not MAiD, then it will be important to wrestle with these similarities and differences to seek a decision that is morally coherent.

Law and Safeguards. Finally, it is important to think through the law as it applies to MAiD in Canada. As outlined in the legislation, the eligibility criteria for MAiD relies heavily on clinician judgement because the language used to determine eligibility is open to interpretation. However, you need to be satisfied that the requirements of the law have been met prior to your participation. As such, it is important for you to consider a number of possible scenarios that you may experience. For example, what does intolerable suffering mean? As a clinician, how might you recognize intolerable suffering? You may want to reflect on what it means for patients when we require that they experience intolerable suffering prior to being eligible for MAiD. Further, what is foreseeable death? Providing MAiD for a cognitively alert person with Parkinson’s may feel different than providing MAiD for a person with intractable pain in the final days of life. When reflecting on your participation in MAiD, you will have to grapple with these variable presentations according to the spirit and rule of law.

In conclusion, it is important to realize that this self-reflective process is one of growth and change. How you think about your decision in relation to MAiD now may be different than how you think about it later. Early evidence has suggested that even those who participate in MAiD initially, may choose not to do so later. Conversely, others who initially object to MAiD may change their minds and participate. The important thing is that you take the time to reflect and make a decision that is in keeping with your moral values. Reflecting on the issues identified above and seeking out conversations with others may help you navigate this complex landscape. Conscientious objection was enshrined in law for a reason; honoring nurses’ moral diversity is vital for a healthy and sustainable nursing profession.

For a more complete discussion of the topic see: Pesut, B., Thorne, S., & Greig, M. (2019). Shades of grey: Conscientious objection in medical assistance in dying. Nursing Inquiry, Advance online publication. Available at: https://onlinelibrary.wiley.com/doi/full/10.1111/nin.12308.

Resources

National Nursing Framework on Medical Assistance in Dying in Canada. Canadian Nurses’ Association. Available at: https://www.cna-aiic.ca/~/media/cna/page-content/pdf-en/cna-national-nursing-framework-on-maid.pdf

Conscientious Objection and Medical Assistance in Dying in Canada: Difficult Questions – Insufficient Answers. Peter Brindley. Available at: https://cjgim.ca/indes.php.csim/article/download/185/721/

Medical Assistance in Dying: What Every Nurse Should Know. Canadian Nurses Protective Society. Available at: https://cnps.ca/MAID

Medical Assistance in Dying: Values-Based Self-Assessment Tool for Health Care Providers. Alberta Health Services. Available at: https://www.albertahealthservices.ca/assets/info/hp/maid/if-hp-maid-self-assessment-tool.pdf

Healing the Divide: A Health Care Provider’s Relational Approach to Medical Assistance in Dying Discourse. Alberta Health Services Available at: https://www.albertahealthservices.ca/assets/info/hp/maid/if-hp-maid-healing-the-divide.pdf

Research Brief #4

Ethical, policy, and practice implications of nurses’ experiences with assisted death: A synthesis

Relatively little has been written about nurses’ experiences with assisted death despite a growing interest in the topic internationally. In this paper, we were interested in gaining a deeper understanding of the implications of assisted death on nursing practice through a review of the international literature. To be eligible for inclusion in this review, studies had to be qualitative in nature and provide an in-depth account of nurses’ experiences with assisted death. We found 6 articles that included the experiences of 55 nurses from Canada, Belgium and the Netherlands. We then took the findings from this body literature and analyzed them in relation to what we had learned in our previous syntheses of the ethical and regulatory literature related to assisted death and nursing. Summaries of these syntheses can be found on this webpage.

The nursing role in each of these countries is somewhat unique. In Canada, nurse practitioners can act as assessors and providers of assisted death and registered nurses have important supportive roles. In Belgium, physicians are required by law to consult with the nursing team. In the Netherlands, no such role or requirement for consultation with the nursing staff exists. Nevertheless, there were remarkable similarities in nurses’ experiences with assisted death across the geographically diverse literature.

Nurses play an important role in negotiating patient inquiries about assisted death.

Patients often addressed their first inquiries about assisted death with nurses; although it wasn’t always easy for nurses to determine whether this was a “true” request or an expression of suffering that is common at the end-of-life. Once nurses determined that this was indeed a request for assisted death, they worked hard to determine if there were other factors they could address to alleviate the patient’s suffering and to determine whether there were other individuals (e.g., family members) who were influencing the patient’s decision. Nurses who were conscientious objectors found it more difficult to engage in these conversations. Figuring out how to be honest and trustworthy without disclosing their personal views on assisted death was a challenge for nurses. Overall, engaging in these important conversations required a high level of nursing skill and ethical judgement. In the regulatory literature, which was restricted to the Canadian landscape, we found that documents emphasized the importance of nurses providing support and information to patients regarding assisted death without influencing patients to choose an assisted death.

Nurses provide wrap-around care for patients undergoing assisted death.

Once patients decided to proceed with an assisted death, it was often the nurses who attended to the logistical details and provided the ongoing support for patients and families. Nurses organized the process, prepared equipment, maintained a continuous presence, and stayed with family post-death to provide support and the opportunity to debrief. Nurses described how important it was to get all the details right, as this would be their last time providing care for this patient and family. Getting it right meant paying meticulous attention to the multiple details that would make the assisted death a patient-centered act. Such detailed attention could be stressful. This approach exemplified the relational ethic of care that has often been seen as the cornerstone of good nursing practice. However, this wrap-around care was not always acknowledged in the documents that provided regulatory guidance to nurses in Canada. Much depended upon whether the assisted death was portrayed in the regulatory documents as an isolated intervention of medication administration or as a staged process of care that unfolded within the context of the nurse-patient relationship.

Assisted death requires significant moral work by nurses.

Assisted death poses a unique moral minefield for nurses, whether they chose to participate or not. Nurses who had experienced the unmitigated suffering of patients were often relieved that at last there was something they could do to definitively end the suffering they had observed. However, experiencing the sudden death of their patient at the intentional hands of healthcare providers was often deeply impactful and generated strong and conflicting emotions. Despite this impact, many nurses described an evolving moral understanding of their comfort as well as discomfort with assisted death, although working with other healthcare providers who held strong moral positions on the topic remained challenging. This moral complexity was mirrored in our review of the ethical literature on nursing in the context of MAiD. The guidance provided to nurses through regulatory documents provided little direction for this complex and nuanced moral landscape.

In summary, findings from this review suggest that it is important to prepare and support nurses for the skilled conversations that preface patient’s decision for assisted death, for the stress associated with getting the wrap around care “right”, and for the complex moral landscape nurses will encounter.

The article upon which this brief is based is available open access.

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