Pain control in the terminally ill child at home

The seriously ill or terminally ill child with cancer has received inadequate pain control in the past, partly due to physicians' and nurses' fears and misconceptions regarding the administration of effective pain medications to a child. Advances in assessment techniques in the infant and young child, as well as increasing use of pain assessment questionnaires and VAS in the older child, have mandated changes in administration of analgesia to children. It is the responsibility of the health-care team of provide adequate pain control to the ill child, using knowledgeable assessment and monitoring skills. The goal of therapy for the dying child is to maintain comfort and support the child and the family. Providing analgesia in the hospital or the home has proven safe and effective when administered either orally or parenterally, and comfort of the child is achieved.     

End-of-life care for terminally ill participants in clinical research

Efforts to improve end-of-life care in the United States have paid little attention to the unique concerns of participants in clinical research who are terminally ill. In this paper we focus attention on and offer an analysis of how to meet the needs of these individuals. To address their concerns, we consider how to reconcile two important tasks: providing optimal end-of-life care and conducting clinical research. First, we examine the inherent tension between the goals of medicine and the goals of science. Second, we focus more specifically on the tensions between a good death and conducting clinical research in patients with a short life expectancy. We examine six domains that have been suggested for measuring a good death: physical symptoms; psychological and cognitive symptoms; economic and caregiving needs; social relationships; spiritual beliefs; hopes and expectations. For each of these domains we examine how the goals of clinical research may conflict or coincide with taking care of a patient with a terminal illness. Finally, we offer suggestions to address these tensions: (1) modify the informed consent discussion for terminally ill participants in research; (2) build a palliative care component into clinical trials; (3) attend to the needs of family caregivers of terminally ill research subjects; (4) arrange for continuity of care so that dropping out of a trial does not jeopardize medical care; (5) train clinical investigators in end-of-life care; (6) develop a counseling strategy for terminally ill participants in clinical research.     

Continuance of nutritional care in the terminally ill patient

Food and water can be naturally delivered to dying patients, or they can be medically delivered. If medically delivered, they are called nutrition and fluids. As such they should be regarded just like all other medical interventions when calculating their burdens and benefits to dying patients. A set of guidelines is proposed on which a policy might be based.     

Exploring terminally ill patients' and their families' perceptions of holistic care in Malaysia

AIM: To document the perception of terminally ill patients and their family members on the care provided to them, and to look at the components of holistic care that are viewed as inadequate. METHODS: Thirty cancer patients from a 10-bed palliative ward and their family members who were the chief carers were interviewed. They were asked to give their perceptions on four major areas of care: physical, social, psychological and spiritual. The participants were asked to report which area(s) of the service were inadequate. RESULTS: Most patients and family members perceived that they received adequate physical care. However, the psychosocial and spiritual aspect of care were perceived as inadequate by the majority of patients and their families. None of the patients interviewed had ever been asked about spiritual distress. CONCLUSION: The holistic model of care in caring for terminally ill patients is not practised fully. Further development in the psychosocial and spiritual aspects of care is necessary. There is a need to conduct further research to address these domains.     

Effects of an expanding home care program for the terminally ill

This study was a quasi-experimental time series design to test the hypothesis that an expanded program of home care for the terminally ill would reduce hospital utilization and costs of care during the last month of life. The data base was derived by comparing cancer deaths in persons less than 65 years of age over a 7-year period from a regional tumor registry against Blue Cross enrollment and claims files, to form claims histories for the last 6 months of life for 1,874 decedents who had made at least one claim during this period. Forty-six percent (46%) of the decedents had used home-care services, and a subgroup of high-intensity users was identified from daily home care charges during the last month of life. As the home care program expanded to provide more intensive home-hospice services, a trend was observed of greater cost savings among home-care users than among nonusers. These savings among users were achieved by a reduction in hospital days, and by a reduction in the mean daily cost of hospitalization. Home-care users also showed significantly less variability in costs than nonusers.     

Life stories of families with a terminally ill child

Family units with a terminally ill child have a tendency to withdraw and this isolation may lead to problems in their mental health. A tendency with psychologists, clergy and helpers from other professions is to act as ideal experts on the lives of saddened people. From painful personal experience, this does not seem to enable acquiescence. Therefore, the aim of research on families with terminally ill children, was to explore and describe their lives and to develop an approach to facilitate their families to obtain acquiescence. In this article however, attention will be given to the life-world of families with terminally ill children. The research consists of two phases. In phase one the experiences of four families with terminally ill children are explored and described by means of phenomenological, unstructured, in-depth interviews. In phase two an acquiescence approach, which was designed for educational psychologists to facilitate families with terminally ill children to achieve acquiscence, is described. This approach is based on results from phase one. This article focuses on phase one. In this phase four families were interviewed individually, in the privacy of their homes. The interviews were audiotaped, and were transcribed for the purpose of data gathering. The data was analysed according to Tesch's method and a literature control was performed to verify the results. Guba's model for the validity of qualitative research was used. Five recurrent themes were identified: 1. Families are able to choose their reactions to the crises of having a terminally ill child. 2. When there is a terminally ill child in the family, the family's values change. 3. Acceptance of the circumstances with a terminally ill child, makes life easier. 4. As families with a terminally ill child learn to live every moment to the full, their quality of life improves. 5. As people learn to accept support, their quality of life with a terminally ill child improves. The research indicated that families with terminally ill children move through a lonely and painful process, which is characterised by growth at the end. This growth implies that the life skills mentioned above, were obtained after years of unimaginable suffering. In order to reduce this period of suffering, an acquiescence approach was designed for educational psychologists to facilitate discovery and acceptance regarding the above life skills with family units and thus allow them to achieve acquiescence.