Rabow Michael W, Hauser Joshua M, Adams Jocelia
Department of Medicine, University of California, San Francisco/Mount Zion, San Francisco 94143-1732, USA.
JAMA. 2004 Jan 28;291(4):483-91. doi: 10.1001/jama.291.4.483.
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 physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.
即使对于那些因严重和危及生命的疾病而接受复杂、强化医疗护理的患者，家庭护理通常也是维持患者生命末期生活的核心。医生与临终患者家属之间这种模糊的关系既带来了挑战，也带来了机遇，而医生可能对此毫无准备。家庭在患者护理的实际和情感方面以及临终决策中发挥着重要作用。与此同时，家庭成员可能会因其工作而承受巨大负担。通过一位死于胰腺癌患者的妻子、女儿和家庭护理护士的视角，我们阐述了家庭护理者的各种经历，并提出了可能有帮助的医生干预措施。我们描述了家庭护理的5种负担（时间和后勤、体力任务、经济成本、情感负担和心理健康风险以及身体健康风险），并审视了医生对家庭护理者的责任。基于现有证据，我们确定了医生为临终患者的家庭护理者提供服务的5个机会领域，包括促进与家庭的良好沟通、鼓励适当的预立医疗计划和决策、支持家庭护理、对家庭情感和关系表示同理心，以及关注家庭的悲伤和丧亲之痛。在悉心照料临终患者的家庭护理者时，医生不仅可以改善患者和家庭的体验，还能在自己的工作中找到更多的支撑和意义。
