Challenges and opportunities for professional growth when providing end-of-life care
Sep 05, 2015, By: Janet Storch, RN, BScN, MHSA, PhD, D.Sc. (Hon Ryerson), LLD (Hon UWO)
End-of-life issues came to the forefront once again earlier this year with the Supreme Court of Canada decision in Carter v. Canada (Attorney General) (2015) that removed the prohibition against physician-assisted death for competent adults within specific parameters. However, end-of-life issues cover a broad area and assisted death is just one component.
This is the first of a three-part series that explores a variety of end-of-life issues from an ethical perspective for nurses. This series focuses on five scenarios, based, in part, on real situations. The unique circumstances and ethical and legal aspects of each scenario call for different responses from nurses and other health-care professionals, families and society.
A natural but supported death
Amalia was an elderly person ready to let nature take its course. She was not afraid of death and she was not asking that death be hastened by medical intervention. She was provided with palliative care in the nursing home where she had lived for several decades. During her final three weeks, she required support and help for pain relief, breathing distress and general anxiety, which were eased with oxygen and medication. The administrators of the facility and the nurses were clear about Amalia’s wishes. A residential care aide was with her 24/7 in those final weeks, with nurses overseeing all care and a physician visiting every other day. Her loved ones agreed with this course of action and she died peacefully surrounded by her family.
Summary of legal and ethical aspects
There was nothing controversial about Amalia’s dying — no hastening of death or prolonging of life. At the core of Amalia’s situation is the wish for a dignified death with relief from suffering. This desire is also present in individuals facing more complex end-of-life situations. Amalia’s death speaks to the concept of individual autonomy and the right of self-determination.
A capable person’s entitlement to refuse unwanted medical treatment flows from the principle of self-determination and is the basis of individual decision-making rights. This right, which is protected by law, is a key element in CNA’s Code of Ethics for Registered Nurses: “Nurses ensure that nursing care is provided with the person’s informed consent. Nurses recognize and support a capable person’s right to refuse or withdraw consent for care or treatment at any time” (2008, p. 11).
The code of ethics also provides important guidance for nurses caring for individuals who are going through a death experience similar to Amalia’s: “In all practice settings, nurses work to relieve pain and suffering, including appropriate and effective symptom and pain management, to allow persons to live with dignity” (CNA, 2008, p. 14) and “When a person receiving care 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. This includes support of the family during and following the death, and care of the person’s body after death” (CNA, 2008, p. 14).
Nurses should also become familiar with palliative care resources. For example, a joint position statement (in press) developed by CNA, the Canadian Hospice Palliative Care Association and the Canadian Hospice Palliative Care Nurses Group outlines the many ways nurses’ efforts need to be directed. These efforts include advocating for and supporting individuals in their experience of living and dying, and honouring their values and health-care wishes and supporting their families.
Research over the past decade shows that one of the greatest ethical problems for nurses is poor care of the dying, particularly in acute care. In many cases, a nurse’s angst was about lack of adequate pain relief and failed attempts of dying patients to refuse further treatment (Fenton, 1988; Rodney et al., 2002; Storch, Rodney, Pauly, Brown, & Starzomski, 2002; Varcoe, Pauly, Storch, Newton, & Makaroff, 2012; Wilkinson, 1987). Often too, nurses find themselves caught between the differing wishes and stated desires of patients and the requirements or orders of families, physicians, administrators and laws or regulations.
Actions for nurses
Nurses and other health-care professionals need to be clear about the law and ethics of death and dying, as well as practice standards developed by their provincial and territorial regulatory body and any workplace policies, to prevent potential errors. They also need to discuss their practice with colleagues and other health-care professionals, which will enable them to practise with a higher degree of confidence in their own knowledge and with support from their team. They can open communication channels on a topic that still causes discomfort, act as teachers and instigate discussions with the public. This role is important, especially in countering any misinformation the public may receive from various sources.
It has been suggested that the approach to death and dying in health care has been excessively rationalistic and that end-of-life decision-making has been excessively individualistic (Murray & Jennings, 2005). Because society has focused to such an extent on clinical issues, the larger issues of death and dying have been sidelined by this medical focus. Nurses can play an important role in this shift from what Gawande (2014) called a culture that has accepted death as a medical event to a culture that sees death as part of life. Nurses have a unique therapeutic relationship with patients and their families; people often turn to them to talk to and answer their questions. Nurses are intimately involved in end-of-life care processes and, in many cases, play an important role in their development (Gastmans, 2012, p. 603).
The scenarios explored in Part 2 of this series (in the October 2015 issue) will highlight the complex and sometimes distressing situations nurses might face when a patient is incapable of decision-making.
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 (in press). The palliative approach to care and the role of the nurse [Joint position statement].
Carter v. Canada (Attorney General), 2015 SCC 5.
Fenton, M. (1988). Moral distress in clinical practice: Implications for the nurse administrator. Canadian Journal of Nursing Administration, 1(3), 8-11.
Gastmans, C. (2012). Nursing ethics perspectives on end-of-life care. Nursing Ethics, 19, 603-604.
Gawande, A. (2014). Being moral: Medicine and what matters in the end. Toronto: Doubleday.
Murray, T. H., & Jennings, B. (2005). The quest to reform end of life care: Rethinking assumptions and setting new directions. Hastings Center Report, 35(6), S52-S57.
Rodney, P., Varcoe, C., Storch, J. L., McPherson, G., Mahoney, K., Brown, H., . . . Starzomski, R. (2002). Navigating toward a moral horizon: A multisite qualitative study of ethical practice in nursing. Canadian Journal of Nursing Research, 34(3), 75-102.
Storch, J. L., Rodney, P., Pauly, B., Brown, H., & Starzomski, R. (2002). Listening to nurses’ moral voices: Building a quality health care environment. Canadian Journal of Nursing Leadership, 15(4), 7-16.
Varcoe, C., Pauly, B., Storch, J., Newton, L., & Makaroff, K. (2012). Nurses’ perceptions of and responses to morally distressing situations. Nursing Ethics, 19, 488-500. doi:10.1177/0969733011436025
Wilkinson, J. M. (1987). Moral distress in nursing practice: Experience and effect. Nursing Outlook, 23, 16-29. doi:10.1111/j.1744-6198.1987.tb00794.x
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.