Mr R was a 70-year-old man, legally blind from retinitis pigmentosa, who was diagnosed as having pancreatic cancer in January 2002. He underwent a Whipple procedure at an urban academic medical center and then received radiation therapy and chemotherapy with fluorouracil and gemcitabine. To alleviate intermittent bowel obstructions, he had a ventilating gastrostomy tube placed for decompression of his abdomen. Over the next 9 months, he was admitted to the hospital several times for infections at the site of his gastrostomy tube, diarrhea, vomiting, and dehydration.He lived at home with his wife, Mrs R, who was also his partner in the marketing firm he had founded. He had one daughter, Ms L, a psychologist who lived locally, and a son, a history professor, who lived far away but visited every few weeks. Both children were active caregivers over the course of their father's illness. Despite Mrs R's own severe rheumatoid arthritis and other health issues, she was determined to care for her husband at home with the assistance of a home care nurse, Ms P, and a housekeeper to aid with daily chores.As Mr R's health deteriorated, a close friend of Ms L's advised her about a local in-hospital palliative care unit. In November 2002, when Mr R's pain and nausea became so severe that they could not be managed at home, he was admitted to the palliative care unit. At admission, Mr R was alert and oriented but bed bound due to weakness. He and his family hoped his symptoms could be quickly controlled so that he could return home. He received intravenous hydromorphone and dexamethasone for pain and intravenous haloperidol and frequent gastrostomy tube flushings for his nausea. His symptoms initially improved and discussions ensued about his transition home. Although scheduled to go home with hospice care, his condition then declined rapidly to a point where his family did not think they could care for him at home, even with in-Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physic...
The proposed construct of medication management skills in hospice will help guide future development of training interventions and clinical assessment tools.
The struggles that nurses in this study cohort experienced indicate the need for further study and may suggest the need for more nursing education and discussion about ethical aspects of palliative sedation.
Background: Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. Methods: A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. Results: The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.
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