Abstract
Death and dying are topics of deep humane concern for many people in a variety of circumstances and contexts. Worldwide, the moment of someone’s death is frequently influenced by medical end-of-life decisions. These decisions refer to a variety of choices with regard to withholding or withdrawing life-sustaining treatments (e.g. artificial nutrition and hydration), palliative treatment and symptom control (e.g. palliative sedation), and situations where lethal medication is purposefully administered (e.g. euthanasia and assisted suicide).
Because medical end-of-life decisions belong to the medical sphere, it is mainly the medical perspective that is described in theoretical and empirical studies as well as in legal regulations regarding care at the end of life. The nursing perspective remains hidden or unclear. The starting point of this issue of Nursing Ethics is that nurses are intimately involved in end-of-life care processes and that they play an important role in the development of these processes. These experiences are reinforced by their patient-centered care approach, their provision of continuous 24-h care, and their experience and expertise in caring for dying patients and their families. During these care processes, nurses are frequently confronted with ethical issues regarding end of life. By means of theoretical and empirical clarifications, this special issue aims to contribute to the development of nursing ethics views on end-of-life care in order to voice the nursing ethics perspective in the debate. A better understanding of how nursing expertise and competencies can be used most effectively in the context of interdisciplinary and ethically sensitive care processes requires an in-depth exploration of the experiences of nurses themselves, as well as of patients and their families. Greater awareness of and reflection on the specific roles and contributions of nurses in end-of-life care for vulnerable patients and their families could promote optimal and ethically responsible nursing care for these patients and their families.
I am very thankful to all the authors who contributed to this issue of Nursing Ethics. This issue presents an international compilation of articles containing research groups from 10 countries (Spain, Sweden, Norway, Belgium, Japan, Iran, USA, Switzerland, the Netherlands, and Germany). A variety of perspectives coming from people (patients, relatives, and nurses themselves) involved in end-of-life care is present. Moreover, the diversity of interdisciplinary perspectives (philosophical, clinical–ethical, and legal) to end-of-life care as well as of methodological approaches (theoretical and empirical methods using quantitative and qualitative designs) enables us to present some new and rich insights into nursing ethics perspectives on end-of-life care.
This issue starts with two theoretical studies that focus on conceptual and social aspects that shape end-of-life practices and the role of nurses therein. Izumi and Nagae question the current definitions of end-of-life care and related concepts as they do not really fit with nurses’ ethical responsibility to people who are in need of end-of-life care. They argue that it is important to be aware of the presuppositions behind the definitions used, as these definitions shape end-of-life care practices. Based on their critical investigation, the authors suggest a new definition of end-of-life care from nursing ethics perspectives. Similarly, but from a totally different perspective, Fernandéz-Sola et al. criticize the current legal regulations of end-of-life care in Spain as the role of the nurse in end-of-life care is not recognized, supporting a contradiction with the reality of the day-to-day care of the terminally ill patient, which mainly concerns the nurse. The limited representation of nurses in legal regulations demonstrates the relationship between sociopolitical power of the professional bodies and its corroboration in the law.
The bridge between theoretical and empirical approaches is built in the study of Ohnsorge et al. that focus on ambivalence of patients’ wishes at the end of life. This phenomenon is investigated by analyzing two case stories based on narrative interviews with two patients and their caregivers. The authors analyze the seemingly contradictory normative statements by patients in communication with others, from a hermeneutical–ethical perspective. This results in a clarification of a more careful and reflective practice of understanding patients’ experiences and meaning-making at the end of life and nurses’ role in this practice.
The ethical meaning of nurses’ involvement in end-of-life care practices is not exclusively linked to the application of technology in care processes. On the contrary, the daily interactions of nurses are ethically sensitive as they can be considered as nurses’ responses to the vulnerabilities of patients and their relatives. This message is convincingly expressed by the qualitative studies of Rejno et al., Manzari et al., and Lind et al. dealing with ethical issues regarding sudden death, organ donation, and intensive care practices, respectively. An original perspective is taken in the studies of Manari et al. and Lind et al., where the nurses’ role in end-of-life decision making is described based on the perspectives of the patient’s relatives. Both studies contain a strong plea for nurses as families’ advocates who support relatives in coming to terms with the hard and challenging situations they are confronted with.
Finally, the influence of cultural, social, and legal contexts on nurses’ attitudes toward end-of-life practices is one of the headlines in the quantitative studies of Tamayo-Velàzquez et al. and Gielen et al. The fact that Flemish nurses express the opinion that there can be cases of refractory suffering and extreme distress in which euthanasia would be a more appropriate solution than palliative sedation is obviously influenced by the fact that euthanasia has been legalized in Belgium.
I hope that this Nursing Ethics special issue will provoke reflection and discussion on nursing ethics perspectives on end-of-life care practices as well as on the methods used in order to reach an ever better insight into this highly relevant but complex nursing phenomenon.