Palliative & supportive care
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Palliat Support Care · Sep 2008
Family health care decision making and self-efficacy with patients with ALS at the end of life.
Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death. ⋯ The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families.
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Palliat Support Care · Sep 2008
The meaning of quality of life: narrations by patients with incurable cancer in palliative home care.
The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden. ⋯ This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.
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Palliat Support Care · Sep 2008
Case ReportsThe conjoint use of music therapy and reflexology with hospitalized advanced stage cancer patients and their families.
Advanced stage cancer patients experience debilitating physical symptoms as well as profound emotional and spiritual struggles. Advanced disease is accompanied by multiple changes and losses for the patient and the family. Palliative care focuses on the relief of overall suffering of patients and families, including symptom control, psychosocial support, and the meeting of spiritual needs. ⋯ When used conjointly, they provide a multifaceted experience that can aid in the reduction of anxiety, pain, and isolation; facilitate communication between patients, family members, and staff; and provide the potential for a more peaceful dying experience for all involved. This article addresses the benefits of the combined use of music therapy and reflexology. Two case studies are presented to illustrate the application and benefits of this dual approach for patients and their families regarding adjustment to the end of life in the presence of anxiety and cognitive impairment.