End of life care: ethical issues

Nurses spend more time with patients who are facing the end-of-life than any other member of the health care team. Yet, studies have shown that many nurses feel inadequately prepared to provide the comprehensive care so important at the end-of-life. Penny Marshall, RN, PhD nursing professor at Johnson County Community College has recently attended a three-day course on end-of-life care held in Pasadena, CA. The American Associate of Colleges of Nursing (AACN) and the City of Hope (COH) National Medical Center received a 3 1/2 year grant from the Robert Wood Johnson Foundation to conduct this training program for undergraduate nursing school faculty members (Geraldine Bednash, PhD, FAAN and Betty R. Ferrell, PhD, FAAN, Principal Investigators). The training program, entitled End-of-Life Nursing Education Consortium (ELNEC), was conducted by distinguished faculty of researchers, educators, authors, and leaders in the field of palliative care; and aimed to provide faculty with comprehensive information on end-of-life care and resources to integrate into nursing school programs. The following two articles draw on this extensive curriculum to discuss two important aspects of end-of-life care: 1) common ethical dilemmas and complex questions that arise in the practice setting; and 2) symptom management during palliative care.     

Diabetes Distress: Assessment and Management of the Emotional Aspect of Diabetes Mellitus

Management of diabetes is well known to be a complex endeavor with many physical and psychological implications. Historically, primary focus has been on the physical complications of diabetes, with little attention being placed on the psychological repercussions. Patients with diabetes deal with intense psychological complications secondary to diabetes management, termed diabetes distress. Although related to emotions, this phenomenon differs from depression or anxiety. Management of diabetes distress includes a psychological approach with diabetes-specific care. Person-centered and positive strength-based language help build the clinician-patient relationship. Diabetes distress care is part of comprehensive diabetes management.     

Filming in hospitals: ethical and methodological issues

Filming people in hospital poses ethical problems for researchers, film-makers and healthcare staff. This article describes the safeguards which need to be put in place to protect patients and those who may be filmed during the course of their work.     

Withholding nutrition at the end of life: clinical and ethical issues

Tube feeding in terminally ill patients has become routine. Indeed, many physicians question the ethics and legality of withdrawal of nutrition and hydration--even in patients whose prospects of recovery are bleak. To avoid unnecessary pain and suffering, patients, physicians, and family members need to discuss the patient's desires, carefully weigh the benefits and burdens of tube feeding, and examine their own beliefs and biases.     

Theory and methods for research on ethical issues in dementia care.

ABSTRACT. Swedish research on ethical issues in dementia care is almost exclusively done by nursing scientists. Many of these studies are rightfully acclaimed as exemplary research. But the strong focusing on the nurse and her relation to the patient tends to bias the ethical issues—the attitudes of other persons involved or affected are also in need of investigation. Further, there is a predilection for content analysis at the expense of causal analysis. In this paper an eclectic approach to the study of ethical issues in dementia care is advocated. More interdisciplinary communication and co-operation is also needed—especially between nursing scientists and moral philosophers. To facilitate such communication and co-operation a model for analysis of ethical issues is presented and discussed. To illustrate my ideas I use three articles by researchers from the department of advanced nursing in Umeå: Ekman & Norberg (1988), Norberg & Asplund (1990) and Åkerlund & Norberg (1989–90).     

Nurses and whistleblowing: the ethical issues

Whistleblowing - the public exposure of organizational wrongdoing - presents practical and ethical dilemma for nurses, and needs to be seen as part of a spectrum of increasingly confrontative actions against miscreant organizations by their employees. The ethics of whistleblowing can only be understood in relation to its moral purpose, whether that is to achieve a good outcome (a consequentialist view) or fulfil a duty (a deontological view). The consequentialist perspective is unable on its own to resolve problems arising from the balance of good and harm resulting from the act of whistleblowing (where considerable harm might be caused) or of responsibility for that harm. A deontological approach provides an analysis of these problems but raises its own problem of conflicting duties for nurses. However, a strong argument can be made for the precedence of the nurse's duty to the patient over her duty to the employer. Although both duties are based on an implicit or an explicit promise, the promise to a person (the patient) must take precedence over the promise to an organization. It can even be argued that duty to the employer may in fact justify whistleblowing by nurses in some circumstances. However, the consequences of whistleblowing are forced upon nurses in a different way by the fact that the danger of reprisals acts as a deterrent to whistleblowers, however justified their actions may be. A more robust approach to the protection of whistleblowers is needed on the part of the government and the National Health Service (NHS) to remedy this situation.     

What to do when the end is near: ethical issues in home health care nursing

As managed care shortens the length of hospital stays, home settings for the practice of nursing will become increasingly important. In spite of community health nursing's long tradition of family-centered care delivered in the home, many discussions of the nurse/patient relationship in the medical ethics literature assume the hospital setting for the practice of nursing and seem to neglect the impact of family and significant others for the nurse/patient relationship. Through a case-based analysis, this article highlights the special ethical and legal issues encountered in caring for patients who are dying at home. This analysis demonstrates that traditional frameworks for the nurse/patient relationship are inadequate for capturing the richness of the relationship the home health care nurse has with both patient and family. By developing a new framework for the nurse/patient/family relationship that (a) recognizes the patient's decision-making authority and autonomy, (b) allows the exercise of the nurse's moral rights, and (c) recognizes the patient's relationships to significant others, the authors attempt to resolve some challenging legal and ethical questions concerning who should be allowed to decide what to do when the end is near. The discussion details the implications of this framework for nursing assessment in the home care setting.     

The significance of a collaborative practice model in delivering care to chronically ill patients: A case study of managing diabetes mellitus in a primary health care center

Non-communicable diseases, especially diabetes mellitus type two (DM2) constitute major health problems in Lebanon that have an adverse impact on health and health resources. Collaborative practice interventions may improve quality care of DM2 and reduce or delay complications. The purpose of this paper was to evaluate the impact of collaborative practice on the quality and cost of effective care for diabetic patients in a primary health care center. A chart audit review of 375 diabetic patients attending an inner city health center in Beirut (Lebanon) was conducted after three and a half years of collaborative practice intervention, which included guidelines for an interdisciplinary health team. Evaluation of the impact of collaborative practice was conducted on the process and outcome of care. The results indicated a high level of enthusiasm, support and the development of team spirit at the process level. At the outcome level there was improvement in documentation, increase in patient recruitment, increase in continuity of care, improvement of glycemic control and decreased cost. In conclusion collaborative practice interventions improved process and outcome variables for diabetic patients. It is suggested that this model could be developed for use in the care of other chronic diseases.     

Effectiveness of a Reminder Prompt to Screen for Diabetes in Individuals With Depression

Significant correlation exists between depression and diabetes. The effectiveness of a reminder prompt was examined to screen individuals with depression for diabetes. Eight behavioral health providers at 5 clinics treated 152 patients with depressive symptoms randomized to either a prompt or nonprompt condition. It was hypothesized that the prompt condition would engage higher rates of individuals in diabetes screening. The reminder prompt increased assessments of body mass index and diabetes risk factors (χ² = 16.9, P < .001) and ordering of hemoglobin A1C tests (95% confidence interval, 2.57-15.64, P < .001). Results suggested the benefit of a structural intervention for behavioral health providers to screen for diabetes.     

Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study

Title. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study Aim. This paper is a report of a study to describe the essential structure of the lived experience of living with severe chronic obstructive pulmonary disease (COPD) during the palliative phase of the disease. Background. Chronic obstructive pulmonary disease is one of the most common diseases throughout the world. Shortness of breath, fatigue and cough are the most troublesome symptoms, and living with COPD often imposes limitations on daily living. The disease has a great impact on quality of life and affects the extent to which people can be active in daily life. Methods. We conducted qualitative interviews of eight people with COPD and collected data over a 2‐month period in 2003. Our patients were recruited from two pulmonary disease clinics in West Sweden. We used a phenomenological methodology to analyse the interviews. Findings. Daily life for people with COPD is affected in several different ways. The patients described how their physical limitations forced them to refrain from meaningful activities in everyday life and led to social isolation. Everyday emotions vacillated between viewing life as meaningful and meaningless. A sense of involvement and the belief that life was meaningful gave the individual the energy and the desire to continue living and to envision a future. Conclusion. Nursing care should include support and facilitation, so that patients can live rather than exist to the end of their lives. It is important to learn from patients and tailor activities to their social, existential and physical priorities, where appropriate family‐centred support may be most effective.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

Self-efficacy in chronic illness: the juxtaposition of general and regimen-specific efficacy

Changes in lifestyle are difficult for most people but necessary for those with a chronic illness, for whom changes may involve, among other adjustments, learning new behaviours and/or modifying one's lifestyle. The ease with which such changes occur depends on the person's efficacy beliefs and outcome expectations. This paper will discuss the conceptual issues related to self-efficacy: general, domain, and specific. Examples will be drawn from the health-related behaviour changes required to manage diabetes and rheumatoid arthritis. For this paper, regimen-specific or task-specific behaviour refers to the multiple tasks that the person carries out for management of their chronic illness. Confounding the issue of perceived efficacy (general, domain or specific), is the fact that compliance with all aspects of a recommended self-care regimen will not necessarily result in metabolic control for the person with type 1 diabetes mellitus, weight loss for the person with type 2 diabetes mellitus, or pain control for the arthritic person.