Evolving strategies to relieve suffering at end-of-life

Oncology nurses and nurses who specialize in palliative care are experts in being attentive to suffering, even when it is expressed in complex ways, and in finding creative medical and supportive care approaches toward relieving it to the extent possible. For patients who are nearing death, pain and symptom management, palliative care, voluntarily stopping eating and drinking, and palliative sedation are alternatives that nurses may have discussed with their patients at various times. For patients with cancer in most of the world, these have traditionally been the only available options for those who experience—or may be anxious about the possibility of experiencing—intolerable suffering in the later stages of a cancer illness and seek to sustain some control over how their dying process unfolds. Engaging in conversations about these options is an exceedingly delicate matter, requiring high level knowledge and skills. Timing, trust, and communication competencies are essential. Although the culture of cancer care and the professional regulatory context in some jurisdictions explicitly try to limit initiation of such conversations to the physicians on the cancer care team, nurses know that it is often in those intimate moments of delivering nursing care, and within the trusted relationships patients have developed with their nurses, that these kinds of questions are raised, or hints are given that such conversations would be welcomed. These kinds of conversations occur as a component of compassionate and caring nursing practice, even when they are not officially recognized or sanctioned as a core expectation for the profession. Therefore, confidence in how to discuss goals of care and end-of-life options becomes fundamental to providing excellent nursing care when patients with cancer are experiencing advanced disease and nearing the end. In Canada, as with an increasing number of countries over the past few years,1.Mroz S. Dierickx S. Deliens L. Cohen J. Chambaere K. Assisted dying around the world: a status quaestionis.Ann Palliat Med. 2021; 10: 3540-3553https://doi.org/10.21037/apm-20-637Crossref PubMed Scopus (71) Google Scholar recent legislative changes have made medical assistance in dying a viable option for patients. When assisted death became not only a medical care option but also a “charter right” under specific circumstances within the Canadian Rights and Freedoms legislation in 2016, the healthcare community moved quickly to create policies, guidelines, standards, and procedures for practice that made explicit the practice expectations and requirements of the health professions involved. Nurse practitioners were included in that legislation as legitimate assessors for and providers of medical assistance in dying. And while registered nurses were not named as having an official role in the same manner, it was immediately apparent that many of them were deeply involved in this work as the health professionals closest to the patients who were exploring these options. I have the privilege of working with a research team studying the experiences of registered nurses and nurse practitioners with respect to these new processes, practices, and experiences since assisted deaths began in Canada. The members of our team have all been profoundly moved by how seriously these nurses have taken their responsibilities in this regard. Nurses are expected to provide an envelope of care to surround the entire process, from the patient's first tentative questions or overt requests, to the planning associated with the process of assessing eligibility, to the deliberations with the patient (and often family) around timing and orchestrating the actual death event.2.Pesut B. Thorne S. Greig M. Schiller C. Roussel J. The rocks and hard places of MAiD: a qualitative study of nursing practice in the context of legislated assisted death.BMC Nurs. 2020; 19: 12https://bmcnurs.biomedcentral.com/track/pdf/10.1186/s12912-020-0404-5Crossref PubMed Scopus (34) Google Scholar In many instances, patients with cancer began to envision the kind of death they would like to have as a central focus within their goals of care. These considerations went well beyond the more conventional “getting your affairs in order,” and might include scheduling the procedure at a time and place that held special meaning for them, arranging for the important conversations they wanted to have with loved ones in advance of the event, explaining their last wishes and expressing legacy messages to their communities. This constituted a very different kind of planning process than has traditionally been the case with a conventional unplanned death, and a very different kind of role for cancer nurses to support these patients and families through it all. Essentially, if this was the direction patients were determined to take, then nurses did all in their power to create the conditions under which a patient’s individualized wishes for their dying scenario could be respected. Nurses also quickly came to realize that, while highly educated and assertive patients might well feel sufficiently confident to formally request conversations around assisted death, those with less confidence or understanding of the system might be intimidated from entering such conversations. Therefore, from a social justice perspective, there seemed a critical role for nurses to augment their conversations with patients and families about goals of care—to ensure that all patients were equally informed—to the extent that they wanted to be—about their available options without ever pressing any particular direction on how those conversations played out.3.Pesut B. Thorne S. Greig M. Chambaere K. Tishelman C. Roussel J. Constructing “good nursing practice” for medical assistance in dying: a qualitative interpretive study.Glob Qual Nurs Res. 2020; 72333393620938686https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7377599/PubMed Google Scholar If this option is considered a charter right for those who experience irremediable suffering and meet other eligibility criteria, then nursing is called upon to ensure that our healthcare system plays its part in making access to it equitable. As nurses learned to have those delicate and nuanced conversations with their patients, many came to realize how complex and difficult discussions about suffering can be.4.Pesut B. Wright D.K. Thorne S. et al.What's suffering got to do with it? A qualitative study of suffering in the context of Medical Assistant in Dying (MAiD).BMC Palliat Care. 2021; 20: 174https://doi.org/10.1186/s12904-021-00869-1Crossref PubMed Scopus (11) Google Scholar Suffering takes many forms—physical suffering, psychological suffering, social suffering, including the full range of anticipatory grief and dealing with all that has been lost. These feelings are often deeply experienced and rarely fully articulable. Being witness to and respecting patients within their suffering can take an emotional and moral toll on nurses.5.Pesut B. Thorne S. Greig M. Chambaere K. Storch J. Burgess M. Riding an elephant: understanding nurses' moral journeys in the context of MAiD.J Clin Nurs. 2020; 29: 3870-3881https://doi.org/10.1111/jocn.15427Crossref PubMed Scopus (24) Google Scholar Working out when and how to deflect such conversations, refer them to others on the team or stay with the patient in the moment at which a conversation arises becomes a painfully difficult decision, and nurses are highly aware that their behaviors and responses in those moments may make the difference between the patient attaining their preferred death experience or potentially having further suffering because of lack of control over the way their life will end. While it is unlikely that guidance on such conversations can ever be prescripted or standardized, it seems apparent that we in the oncology nursing world will need to be prepared to take on this work—to ensure that our patients have access to the support and information they need, and where assisted death is an option, have a path through toward considering it. Over the coming years, this topic will need to be a focus of our research, our continuing education, and our collegial conversations as we wrestle with the nuances of language, timing, and information, each within our own national and regional regulations, customs, and laws. As a professional community, specialist oncology nurses are skilled in many aspects of delicate communication. They work hard to know how to support patients and families in balancing optimism and pragmatism, how to help them understand the uncertainties of cancer diagnosis and treatment planning, and how to help them manage the complexity of physical symptoms and emotional experiences across the cancer trajectory. And now, this new set of powerfully influential challenges is being thrust upon us—these conversations that may well have a direct bearing on how the end of the patient's life with cancer will be enacted. Nursing is a highly trusted profession. And we nurses work closely and intimately on life and death issues with some of the most vulnerable of patients. Ultimately, therefore, the oncology nursing community must work toward ensuring that those advanced cancer patients whose suffering is not remediable, and who seek reassurance that they will be supported throughout their journey with cancer, will not be abandoned in their search for the end-of-life options for which they may be—or become—eligible. These are changing times and together we can change to meet them. The studies referenced here have been funded through the Canadian Institutes of Health Research Project Grants (PJT-148655 and #PJT-169144). The funding agency has had no role in the design of the study; in the collection, analysis, or interpretation of the data, or in writing this editorial.

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