Journal of palliative medicine
-
This paper reviews quantitative evaluations of the efficacy of intervention programs designed to reduce the pain and suffering associated with bereavement. After identifying the psychological and physical health impacts of bereavement and outlining the prevalence of detrimental outcomes, we conclude that a minority of bereaved persons experience severe and sometimes lasting consequences, whereas the majority manage to overcome their grief across the course of time. We detail criteria for establishing the efficacy of bereavement intervention and examine the impact of intervention according to these stringent criteria. ⋯ Intervention soon after bereavement may interfere with "natural" grieving processes. Intervention is more effective for those with more complicated forms of grief. Finally, a research agenda is outlined that includes the use of rigorous design and methodological principles in both intervention programs themselves and in studies evaluating their efficacy; systematic investigation of "risk factors"; and comparison of relative effectiveness of different intervention programs (i.e., what works for whom).
-
Whether patient suffering is caused by physical symptoms, unwanted medical intervention, or spiritual crisis, the common pathway to relief is through a provider who is able to elicit these concerns and is equipped to help the patient and family address them. This paper reviews the current state of knowledge in communication at the end of life, organized according to a framework of information gathering, information giving, and relationship building; and then focuses on interventions to enhance communication among patients, providers, and families. Several observations emerge from the existing literature. ⋯ Finally, huge gaps remain in our current knowledge, particularly with regard to understanding the relationship between communication style and outcomes. These findings suggest several recommendations. We should create larger and more diverse datasets; improve upon the analysis of recorded communication data; increase our knowledge about patient preferences for information; establish a stronger link between specific communication behaviors and outcomes; and identify more efficient ways to teach providers communication skills.
-
As background for a National Institutes of Health State of the Science Conference on End-of-Life-Care, we performed a systematic review of end-of-life care and outcomes. The systematic review was intended to evaluate the evidence in the field from the perspective of concerns important to patients, caregivers, and the health care system. ⋯ The review identified 24,423 total citations, of which 911 comprised the final set used for the evidence report. This very large, diverse body of literature reflects the tremendous growth of the field of end-of-life care over the last decade.
-
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. ⋯ The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.
-
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. ⋯ This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.