Challenges and opportunities for professional growth when providing end-of-life care
Oct 03, 2015, By: Janet Storch, RN, BScN, MHSA, PhD, D.Sc. (Hon Ryerson), LLD (Hon UWO)
This is the second article in a three-part series exploring end-of-life issues from an ethical perspective and what they mean for nurses. The first article focused on a capable person experiencing a natural death. In Part 2, I present two distinct scenarios in which the person is clearly incapable. It is important to note that the Carter decision on physician-assisted dying, which focuses on competent adults, does not have any impact on either scenario. In the first, the family wants care for their loved one to continue, through life support measures. In the second, the family wants certain care measures to be discontinued.
At issue: Providing life support measures
Abdul, in his late 50s, unexpectedly became comatose following brain surgery and is on life support. His doctors eventually came to the conclusion that he would never recover and advised that the ventilator and feeding tube keeping him alive be removed. Propelled by her religious beliefs, his wife sought an injunction to stop the doctors from ending life support. Abdul has no advance directive; there is no written indication of his wishes.
Summary of legal and ethical aspects
Abdul’s physicians considered his continuing treatment to be inappropriate because there was no hope he would recover from his persistent vegetative state. The treating physicians also contended that if the court granted the family’s request, they would be forced to act against their professional and ethical obligations to do no harm by maintaining a biologically alive man in a state of living death. They argued that the treatment was akin to torture because a prolonged life on artificial supports leads to great suffering, all medically induced (Schafer, 2013). Abdul’s nurses, too, who provided his care in 8- to 12-hour shifts, were placed in a compromising position.
Nurses may witness life-prolonging treatment that seems inherently wrong to them but which they feel powerless to change. They may perceive that their voices are not heard in discussions about these situations. Nurses in such instances often experience moral distress and a conflict of conscience. This realization may lead them to declare their conscientious objection, requesting permission from the employer to refrain from providing care because a practice or procedure conflicts with their moral or religious beliefs (CNA, 2008, p. 23). CNA’s Code of Ethics for Registered Nurses provides guidelines for making such a request (2008, pp. 43-46). Further, the code points out that the objection should not be based on prejudice, fear or convenience (2008, p. 45).
The Carter v. Canada (Attorney General) (2015) case on physician-assisted death acknowledged this conflict of conscience. In its decision, the Supreme Court of Canada noted that nothing in the change in law “would compel physicians to provide assistance in dying” and that their participation in assisted dying is a matter of conscience and in some cases religious beliefs (para. 132). This recognition is important to all health-care providers and their right to follow their conscience.
The Abdul scenario is based on the Ontario case of Cuthbertson v. Rasouli (Schafer, 2013), in which the Supreme Court of Canada determined that substitute decision-makers must have a say in ending life support and that future similar cases in that province would best be decided by the Consent and Capacity Board (CCB). The Supreme Court emphasized that its decision specifically addressed what the Ontario Health Care Consent Act allows. Because such boards do not exist in other parts of the country, conflicts must go to the courts for resolution.
The Rasouli case reminds us that family members are an important consideration in patient care. The code of ethics provides guidance to work with families “to take into account their unique values, customs and spiritual beliefs, as well as their social and economic circumstances” (CNA, 2008, p. 13). It is through recognizing the intrinsic worth of each person that nurses can support and communicate with families, even when disagreeing with them. At the same time, nurses must advocate for those in their care if they believe that the health of those persons is being compromised by the decision-making of others (CNA, 2008, p. 11).
Actions for nurses
Talking about complex end-of-life issues can cause discomfort for patients and families. Nurses can facilitate positive dialogue by using neutral language. For example, some words are emotionally charged and detract from a rational discussion. Rather than referring to Abdul’s continued treatment as being futile — a word that implies Abdul himself is no longer useful — nurses can speak about the appropriateness of his care, which is more objective and considers what is in his best interest.
Nurses have a duty to be advocates “for resources that support persons and families in choosing their preferred environment for a peaceful and dignified death” (CNA, Canadian Hospice Palliative Care Association, Canadian Hospice Palliative Care Nurses Group, 2015). In addition, nurses can choose to advocate for better decision-making mechanisms, similar to Ontario’s CCB, in other jurisdictions or promote the role of ethics committees in their own facilities.
At issue: Administering food and fluids
Monika, 82, is in a nursing home, where she exists in a near-vegetative state. She had previously worked as a nurse for many years, caring for patients with Alzheimer’s disease. Before being diagnosed with the disease herself, she had stipulated in a written advance directive that she be allowed to die if she was ever in a state of advanced dementia. In spite of this, the facility’s nurses and care aides were instructed to continue to give her food and fluids, as doing otherwise would constitute neglect. When challenged by Monika’s daughter, the facility argued that Monika opened her mouth when being fed, which they saw as a sign that she wanted food. They rejected the notion that this could be a reflex action. Monika’s daughter filed a lawsuit arguing that this continued feeding constituted battery.
Summary of legal and ethical aspects
This scenario is based, in part, on the B.C. Supreme Court case Bentley v. Maplewood Seniors Care Society but does not reflect all of its complexities and complicating factors. One of the many problematic issues in this case is that Mrs. Bentley’s instructions about her care were muddled by different statements that used unclear and ambiguous language, and were found not to comply with the formal requirements of an advance directive in British Columbia (Rule, 2014).
Advance directives, written statements about how and what decisions should be made if the person becomes incapable of making decisions for himself/herself (CNA, 2008, p. 22), fall under provincial/territorial jurisdiction, and there are differences in how these documents are viewed and used (Godkin, 2008). Nurses need to be aware of the laws governing advance directives, capacity assessment and substitute decision-making in their jurisdiction. Furthermore, they must be aware of any related workplace policies and practice standards developed by their provincial / territorial regulatory body.
Actions for nurses
Although advance directives are important, it has been observed that too much focus has been placed on creating documents instead of improving communication between patients, their families and friends, and care providers (Piemonte & Hermer, 2013). A formal advance directive is only one aspect of the communication and planning required to help people prepare for death. If the people the dying person cares most about have been involved in these conversations, problems of interpretation are less likely to arise and the passage to death can be eased, the level of comfort raised and the burden of care lightened for the substitute decision-maker (Senate of Canada, 2000).
Nurses can play a key role in encouraging patients at the end of life to be clear about what they want. Along with advance directives, equally important are open discussion and sensitive listening, which can lead to greater clarity for all.
The scenarios explored in the last part of this series (in the November 2015 issue) will highlight the issue of physician-assisted death and what it may mean for nurses.
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.
Canadian Nurses Association, Canadian Hospice Palliative Care Association, Canadian Hospice Palliative Care Nurses Group (2015). The palliative approach to care and the role of the nurse [Joint position statement]. Retrieved from https://hl-prod-ca-oc-download.s3-ca-central-1.amazonaws.com/CNA/UploadedImages/05255e6e-9517-43bc-8bc1-f1768316d4e5/Documents/The_Palliative_Approach_to_Care_and_the_Role_of_the_Nurse_e.pdf
Carter v. Canada (Attorney General), 2015 SCC 5.
Godkin, M. D. (2008). Living will, living well: Reflections on preparing an advance directive. Edmonton: University of Alberta Press.
Piemonte, N. M., & Hermer, L. (2013). Avoiding a “death panel” redux. Hastings Center Report, 43(3), 20-28.
Rule, S. (2014, April 6). Bentley v. Maplewood Seniors Care Society [Blog post]. Retrieved from http://rulelaw.blogspot.ca/2014/04/bentley-v-maplewood-seniors-care-society.html
Schafer, A. (2013, October 18). Right-to-die ruling: Win for families, loss for common decency. Globe and Mail. Retrieved from http://www.theglobeandmail.com/globe-debate/right-to-die-ruling-a-win-for-families-a-loss-for-common-decency/article14933896
Senate of Canada. (2000). Quality end-of-life care: The right of every Canadian. Report of the Senate subcommittee to update Of life and Death. Retrieved from http://www.parl.gc.ca/Content/SEN/Committee/362/upda/rep/repfinjun00-e.htm
Janet Storch, RN, BScN, MHSA, PhD, D.Sc. (Hon Ryerson), LLD (Hon UWO), is professor emeritus of the school of nursing at the University of Victoria.