Oncology Nurses' Narratives About Ethical Dilemmas and Prognosis-Related Communication in Advanced Cancer Patients

Susan M. McLennon, PhD, RN: Margaret Uhrich, BSN, RN, Sue Lasiter, PhD, RN: Amy R. Chamness, BA, Paul R. Helft, MD

Disclosures

Cancer Nurs. 2013;36(2):114-121. 

In This Article

Discussion

Care of patients with cancer facing the end of life is complex and requires the expertise of a number of healthcare providers. Nurses and physicians play the largest role in cancer care. The need for individualized treatment adds to the complex nature of the plans of care, which many times includes ethical dilemmas. Nearly half of the nurse participants in this study responded to the request for descriptions of ethical dilemmas that were encountered during their care of patients with cancer. The most frequently encountered dilemmas (60%) were associated with truth telling, including barriers to truth telling (25%) and uncertainties surrounding truth telling (21%). Nurses who witnessed or became aware of incorrect, incomplete, or misleading information given to patients felt an obligation to provide complete and trustworthy care but were confused about how to proceed given the power differential and role uncertainty.

Nurses also perceived that conflicting obligations were embedded in 30% of the dilemmas (n = 28) related to issues associated with families (16%) and with culture (14%). Dilemmas that stem from family beliefs, mores, and cultural norms can, in some cases, force nurses into deceptive behaviors that run contrary to a nurse's personal beliefs. In addition to familial and cultural norms, nurses must also act in accordance with healthcare laws, such as the Health Insurance Portability and Accountability Act of 1996, which were devised to protect patients from unauthorized disclosures of personal health information. Together, these well-intentioned norms and laws often stand in the way and are thus perceived as barriers to nurse actions when attempting to provide patients with high quality and individualized cancer care. This ethical tension sometimes prevents nurses from helping patients with critical end-of-life decisions and actions that bring positive closure to life in ways they would otherwise not be capable of.

Finally, 9% of the sample provided narrative comments about issues related to futile treatments and quality of life. The ethical dilemma related to the perceived futile treatments was many times closely aligned with truth telling with some distinct differences. Nurses felt conflicted when either a family member or physician, including medical residents, took advantage of the power differential in an attempt to administer treatment that the patient would have otherwise declined. The treatments were perceived by the nurses as futile and often destructive to quality of life at the end of life, and if not taken, the patient would have been better off without it. Overly aggressive care was most often discussed related to chemotherapy and blood products administered to older adults, sometimes against their wishes. Greater attention to ascertaining and adhering to older adults' wishes for end-of-life treatments is recommended.

Sometimes nurses perceived that the patients did not know or understand their personal situation and would, if given a choice or a voice, choose no treatment over aggressive treatment. Nurses thought the remainder of the patient's life might have been better spent with loved ones or other pursuits of their choice instead of dealing with adverse effects of cancer treatment.

There were 82 narratives written in response to the request for additional comments that were related to prognosis-related communication. Most of the comments (33%) centered on who should engage in prognosis-related discussions with patients and families. Nurses thought that, based on the extent and nature of their education, physiological prognosis and treatment options fell into the role of physicians or nurse practitioners. In some cases, they also thought that experienced nurses could also engage in such conversations. Only after a full and truthful explanation of their personal cancer situation should the patient make his/her own treatment decisions. Under these conditions, nurses (22%) thought they could then take over and help the patients carry out their chosen plan. In this ideal case scenario, the nurses would not feel as though they were working in the dark. However, many nurses described ways that they initiated and facilitated prognosis-related discussions to take place by being aware of patient and family needs and questions, by recognizing inadequate end-of-life planning, and by interceding when clinical situations became unreasonable. Some suggested, importantly, that collaboration between physician and nurse around prognosisrelated communication was the most adaptive practice.

Clearly, the nurses' narratives revealed the need for more education about their role in prognosis-related discussions. They also needed more information about how to facilitate these types of discussions. The nurses called for improved methods for conveying the status and content of these discussions to all members of the healthcare team. Given the recent emphasis on effective communication between the healthcare team and patients and families[17] and the focus on improving end-of-life care,[18] there is identifiable support for additional work in this area. Until there is greater attention to the end-of-life needs of advanced cancer patients and their families, there will continue to be patients referred to hospice too late and others who suffer needlessly.

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