Royal Hobart Hospital, Tasmania, Australia.
Ethics is a hot topic these days. Home health care providers need not be ethicists, however they do need to be able to identify problems quickly, and know how to address them. This paper explores the ethical issues arising from a narrative analysis involving an advanced cancer patient receiving Total Parenteral Nutrition (TPN) at home. It shows how complicated it is today to make nutrition support decisions that would have been customary less than 30 years ago. For and against arguments of TPN for advanced cancer patients are reviewed. Ethical positions adopted by the medical and nursing professions are explored and contrasted. The importance of patient autonomy, within a holistic notion of care, including decisions incorporating quality of life, are affirmed, providing a challenge to monitoring the status quo in approaches to decision making.
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DK Mullady is a Fellow in Gastroenterology, Hepatology, and Nutrition, and SJD O'Keefe is Professor of Medicine and Director of the Center for Intestinal Health and Nutrition Support, in the Division of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh, PA, USA.
Intestinal failure can result from surgical resection, obstruction, dysmotility, congenital deficiencies or disease-associated loss of absorption. Before the development of intravenous feeding in the late 1960s, the condition was fatal, but by the 1990s approximately 40,000 patients were being successfully managed on long-term home parenteral nutrition (HPN) annually in the US. Survival on HPN depends on the nature of the underlying medical condition: over 80% of Crohn's disease patients survive for 5 years, but only 20% of cancer patients survive for 1 year. Although a patient's nutritional status is easy to maintain, there are serious long-term complications that arise from bypassing the gut and infusing nutrients directly into the systemic circulation. Catheter sepsis occurs about once per year (range -12 times). Abnormalities in liver function tests are common, but end-stage liver disease is rare. Central venous thrombosis develops in nearly all patients after 5 years. Although approximately 80% of patients on HPN are completely rehabilitated at home, their quality of life is impaired by the perpetual dependence on nocturnal intravenous infusions (every 8-12 h). In conclusion, HPN has allowed patients with previously fatal intestinal failure to survive and lead relatively normal lives at home, but their quality of life remains impaired by the dependence on intravenous infusions and complications that progress with time.
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Center for Health Ethics, the University of Missouri-Columbia, USA.
Faculty Associate, Pallative Care, Health Sciences, La Trobe University, Melbourne, Victoria, Australia.
This paper summarises the results of 327 Australian health care chaplains with regard to their involvement in issues concerning Not For Resuscitation (NFR)/Do Not Attempt Resuscitate (DNAR) decisions within the health care context. The findings indicate that 24% of the chaplains surveyed had provided some form of pastoral intervention directly to patients and/or their families dealing with issues concerning NFR/DNAR and that approximately 18% of chaplains had assisted clinical staff with issues concerning NFR/DNAR decisions. Differences of involvement between volunteer and staff chaplains are noted, as are the perspectives of chaplaincy informants regarding their role in relation to NFR/DNAR decisions. Some implications of this study with respect to chaplaincy training and practice are noted.
Australian Health and Welfare Chaplains Association, and the School of Public Health, La Trobe University, Melbourne, VIC.
OBJECTIVE: To explore the role of health care chaplains in providing pastoral care to patients, their families and clinical staff considering decisions to withdraw life support. METHODS: Quantitative data were obtained retrospectively from a survey of 327 Australian health care chaplains (both staff and volunteer chaplains) to initially identify chaplaincy participation in withdrawal-of-life-support issues. Qualitative data were subsequently obtained by in-depth interview of 100 of the surveyed chaplains and thematically coded using the World Health Organization Pastoral Intervention (WHO-PI) codings to explore chaplains' roles. RESULTS: Over half the staff chaplains surveyed (57%) and over a quarter of the volunteer chaplains (28%) indicated that they had been involved with patients or their families in withdrawal-of-life-support decisions. Over a third of staff chaplains (37%) and 16% of volunteer chaplains had assisted clinical staff concerning withdrawal-of-life-support issues. The qualitative data revealed that chaplains were involved with patients, their families and clinical staff at all levels of pastoral intervention, including "pastoral assessment","pastoral ministry","pastoral counselling and education" and "pastoral ritual and worship". The specific nature of chaplaincy involvement varied considerably depending on the idiosyncratic issues faced by patients, families and clinical staff. These activities indicated that pastoral care could be provided for the support and benefit of patients, their families and clinical staff facing a complex bioethical issue. CONCLUSIONS: Through a variety of pastoral interventions, some chaplains (mostly staff chaplains) were involved in assisting patients, their families and clinical staff concerning withdrawal-of-life-support issues and thus helped ensure an holistic approach within the health care context. Given this involvement and the future potential benefit for patients, families and clinical staff, there is a need to develop continuing education and research on pastoral care and chaplaincy services.
Department Editor.
Australian Health and Welfare Chaplains Association (L.B.C.) and La Trobe University (L.B.C., B.R.) Melbourne, Victoria; and University of Tasmania School of Medicine (C.J.N.), Hobart, Tasmania, Australia.
This paper summarizes the experiences of 327 Australian health care chaplains with regard to their involvement in issues concerning pain control within the health care context. The findings indicate that approximately 60% of surveyed chaplains had provided some form of pastoral intervention directly to patients and/or their families dealing with issues concerning pain, and that approximately 36% of chaplains had assisted clinical staff with issues concerning patient pain. Differences of involvement between volunteer and staff chaplains are noted, as are the perspectives of chaplaincy informants regarding their role in relation to pain control. Some implications of this study with respect to chaplaincy utility and training are noted.
OBJECTIVE: To identify key issues affecting women general practitioners in their professional and non-professional lives. DESIGN: A qualitative study using the Delphi technique, with three rounds of data provision circulated to each participant. Coding was used to ensure anonymity. SETTING AND PARTICIPANTS: The participants were a purposive sample of 40 women GPs drawn from all Australian States and Territories. The study was conducted between October 1996 and January 1997. OUTCOME MEASURES: Key issues affecting the professional and non-professional lives of women GPs. RESULTS: Some of the key professional issues for women GPs were job satisfaction, balancing work and personal life, autonomy, availability of flexible and part-time work and training, affordability of professional expenses, fair remuneration, and having a voice in decision-making. Key non-professional issues included self-care; time for relationships with a partner, children, family and friends; and time management to allow pursuit of non-medical interests. CONCLUSIONS: The conflicting demands made on women GPs diminish their job satisfaction and lead to stress and imbalance in their lives. Recommendations to ameliorate the problems for women GPs include appropriate training, policy formation, financial and other support, and a change in cultural expectations of women GPs by the community, the profession and governments.
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Ethical dilemmas are encountered frequently in long term facilities, encompassing a myriad of concerns related to end of life care, rehospitalization, artificial hydration and nutrition, capacity for decision making, use of sedation, and dealing with conflict that may arise amongst those caring for and about the patient. Having a formalized means of sorting through difficult cases is often not readily available in long term care facilities that have limited staffing and are often a remote distance from tertiary care centers where clinical ethicists tend to live professionally. A method is proposed to provide patients, families, and staff a means by which to systematically work through ethical dilemmas when formal ethics consultation is not available.
Department of Human Nutrition, Bartʼs and The London School of Medicine and Dentistry, Queen Mary University of London, The Wingate Institute, London, UK.
PURPOSE OF REVIEW: To highlight the most important and salient articles regarding home parenteral nutrition and quality of life published within the last 3 years. RECENT FINDINGS: In recent years, quality of life research in home parenteral nutrition has highlighted the need for a therapy-specific validated questionnaire. Several papers suggest a greater psychological input is required to better understand and evaluate this patient population. Issues surrounding the use of home parenteral nutrition in malignancy have arisen, prompting discussion on ideal timing and candidacy for home parenteral nutrition. Intestinal transplantation is evolving and improving, making it a possible alternative to home parenteral nutrition. Earlier referral is suggested as late referral can result in poorer outcome. SUMMARY: Home parenteral nutrition is a life-sustaining therapy for individuals with intestinal failure. There is now a relatively large amount of research into the quality of life in this population, but more focused measurements (in the form of validated therapy-specific questionnaires) are required to answer questions relating to cancer and intestinal transplantation.
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, and Departments of Medicine and Oncology, Johns Hopkins University School of Medicine; Community Hospices of Maryland. sdy@jhsph.edu.
Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer, rather than the cause of decreasing functional status, and providing supplemental nutrition rarely changes the course of the disease. This article reviews evidence on issues relevant to enteral and parenteral nutrition in patients with advanced cancer, including benefits, risks, and discomforts; how these types of nutrition are used and perceived, and how decisions are made; and how decision-making might be improved.
Palliativstation des Krankenhauses der Elisabethinen, Linz, Austria.
By means of a case report on a 44-yearold female patient, we show how, with changing personnel and places of care, decisions as well as the kind of decision-making during illness influence the quality of care. The patient was receiving immunosuppressive therapy after kidney transplantation and then suffered from a carcinomatous ovary. At first she refused postoperative chemotherapy, but then returned with a very advanced state of metastatic growth. The lack of continuity, a missing overall interdisciplinary concept of medical case, as well as the failure to document decision processes and the patient's attitude to life and suffering made it difficult for the caring team to accompany her in the last weeks of life. A possible solution to such a complex problem will be the introduction of ethical case deliberation.
University Surgical Unit, Northern General Hospital, Sheffield, England.
A case of priapism in a patient receiving home parenteral nutrition is reported. To our knowledge this is the first such case to occur in a patient receiving home parenteral nutrition. The literature is reviewed and the possible aetiology discussed.
Indiana University of Pennsylvania, USA. tshell@iup.edu
Istituto Trentino di Cultura, Centro per le Science Religiose, Via S. Croce 77, 38100, Trento, Italy.
Department of General and Geriatric Medicine, Northwick Park Hospital, Harrow, UK.
Parenteral nutrition is an expensive therapeutic modality that is used to treat patients with intestinal failure. The benefit it offers in terms of life prolongation needs to be weighed against its risks and burdens. Through the use of descriptive clinical vignettes, this article illustrates the ethical and legal principles that underpin decisions to administer and, more importantly, to withhold or withdraw parenteral nutrition.
