Challenges and opportunities for professional growth when providing end-of-life care
Nov 06, 2015, By: Janet Storch, RN, BScN, MHSA, PhD, D.Sc. (Hon Ryerson), LLD (Hon UWO)
This is the last article in a three-part series exploring end-of-life issues from an ethical perspective. The first article focused on a capable person experiencing a natural death. The second examined situations in which the people receiving care were clearly incapable and the family wanted care to be continued in one case and stopped in the other. In this third article, I present two scenarios in which a capable individual’s wish is for assisted death.
At issue: Challenging the status quo
Maurice, a physician, had terminal brain cancer. In his final weeks, Maurice had become paralyzed, was struggling to breathe, had failing vision and hearing, and had lost control of his bodily functions. He was completely dependent on his family and attending nurses. A few days before his death, he was videotaped making a public plea for the legalization of assisted death in Canada. In the video, he called on physicians who did not support assisted death to understand his suffering and to consider that they might feel quite differently if they lived in his body for 24 hours. He lamented having lost control over his life and having no legal option to end it.
Summary of legal and ethical aspects
The scenario is a poignant illustration of the agony that can be associated with losing one’s sense of self-determination during the course of a terminal illness. The concept of self-determination was discussed in the first article in this series (September 2015 issue); it featured Amalia, who, like Maurice, wished for a dignified death with relief from suffering. Although palliative care was the answer for her, it was not sufficient for Maurice, whose deteriorating condition was causing him unbearable pain.
This scenario is based, in part, on the case of Dr. Donald Low, a physician who captured national attention for his management of the 2003 SARS epidemic in Toronto. Low died in 2013, prior to the Supreme Court of Canada decision in Carter v. Canada (Attorney General) on physician-assisted death. Low’s suffering and plea for help to die with dignity were hard to dismiss and served as a wake-up call to all who have limited experience with the challenges of death and dying. He gave voice to those who have experienced pain, severe discomfort and suffering while dying. His situation also illustrates the fragility that patients feel.
Actions for nurses
CNA’s Code of Ethics for Registered Nurses (2008) provides guidance to nurses to support patients “in maintaining their dignity and integrity” (p. 13). This support is particularly relevant at end of life. When a patient is terminally ill or dying, “nurses foster comfort, alleviate suffering, advocate for adequate relief of discomfort and pain and support a dignified and peaceful death” (2008, p. 14).
Summary of legal and ethical aspects
The next scenario incorporates some elements of the Carter case, which involved two women who had intractable and progressive diseases. Gloria Taylor, who had ALS, and Kay Carter, who had advanced spinal stenosis, challenged the constitutionality of subsection 241(b) of the Criminal Code. The Court’s decision provided the change in law Rashida was hoping for: to allow physician-assisted death for “a competent adult person who (1) clearly consents to the termination of life; and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition” (Carter v. Canada, 2015).
At issue: Inquiring about assisted death
Rashida is in agony, knowing that in a matter of months she will experience the locked-in syndrome typical for patients with amyotrophic lateral sclerosis (ALS). She has often expressed her wish that someone help her end her life at the point she perceives it to be unbearable. She followed the Carter case with great interest, hoping the Supreme Court’s decision would help her with her own situation. Her home care nurse, Rolf, feels uncertain about what he should say to Rashida and how to support her. He knows he must be careful not to shut down communication but also understands that any changes to the Criminal Code, as a result of the Carter decision, will take time to come into effect.
Actions for nurses
Nurses need to reflect upon and thoughtfully consider how to listen and appropriately respond to competent patients who express a desire for help to die. In this scenario, Rolf could explore Rashida’s reasons for making the request. Is her request motivated by fear of pain or abandonment, or does she have other concerns? Rolf might then explore with Rashida how each of her expressed concerns could be addressed. Rolf needs to maintain an open dialogue to ensure Rashida has someone to talk to, calling on others on her care team — such as a psychologist, social worker or chaplain — to be there for her as well.
Rolf should carefully document any discussions he has with Rashida, her family members and other members of the health-care team about end-of-life questions and concerns. At the same time, it is paramount that he protect Rashida’s privacy and maintain confidentiality (CNA, 2008, p. 15). Rolf needs to understand the law, the practice standards developed by his provincial or territorial regulatory body, and any workplace policies relating to end-of-life care, as they are at present and as they may evolve. Professional journals and media reports will assist Rolf in keeping abreast of emerging issues surrounding physician-assisted death; the latter should be assessed with a critical eye, however.
Quebec has passed legislation to allow for medically assisted dying in special cases, and other provinces and territories may follow a similar path in the near future. The timing is right for nurses like Rolf to lend their voices to discussions with public officials and in public forums and consultations about any such legislation.
Nurses can contribute their knowledge and experience to this area by becoming involved in professional initiatives to help prepare the nursing profession for its role in physician-assisted death. One way to do this is to reach out to their provincial/territorial regulatory body to see how they can assist in shaping professional standards. They may also think about approaching their employer to see if there is a committee they might join or start up that focuses on policy and guideline development on this issue. Certainly, spearheading discussions with peers and other health-care providers is important, as is modelling neutral language in discussion and debate, as noted in Part 2 of this series. For example, using the term physician-assisted death (as communicated in the Carter decision) rather than euthanasia or assisted suicide will facilitate rational dialogue.
As this issue of Canadian Nurse goes to print, government consultations are occurring at federal and provincial/territorial levels to prepare for the implementation of the Carter decision, which is due to come into effect February 2016. As new information and guidance emerge, nurses are encouraged to continue to refer to the code of ethics for its valuable teachings.
The case scenarios in this three-part series illustrate the unique situations of patients at end of life and the associated ethical and legal aspects to consider. It is hoped that these articles will encourage helpful discussion and foster insight and understanding.
The author thanks Laurie Sourani, BA, LLB, policy analyst at CNA, for her assistance in the preparation of this article.
Canadian Nurses Association. (2008). Code of ethics for registered nurses. Ottawa: Author.
Carter v. Canada (Attorney General), 2015 SCC 5.
Criminal Code, RSC 1985, c C-46, s 241.
Read Respecting Choices in End-of-Life Care [PDF, 550 KB], the research paper by Janet Storch this series is based on.