School of Social Work, Wheelock College, Boston, Massachusetts, USA.
Soc Work Health Care. 2010;49(7):603-17. doi: 10.1080/00981380903327921.
Changes within the health care industry have resulted in a shift that, to a large extent, places patients in the position of managing their own health care. While self-determination is desirable, it can also lead to new challenges, as when patients who are critically ill and/or dying must rely on family members to function as primary caregivers and managers of their treatment plans. Typically, patients and their families lack the guidance and oversight of a medical professional to coordinate a multifaceted health care regimen instituted by the variety of specialists involved in patients' diagnoses and treatments. As the patients' health declines and treatment plans become more complex, so too does the level of involvement of family caregivers, who often must manage treatment plans in addition to providing bedside care. This article cites the example of a woman who was exhausted by her role as sole caregiver for her dying husband and describes her feelings of powerlessness within the hospital setting as she struggled to coordinate assistance from her husband's medical specialists during end-of-life decision making. This case illustrates the importance of the following: (a) in cases involving hospitalized patients who require complex care from multiple specialists, it should become standard practice to enlist medical social workers to provide an overall assessment of the patients' status, prognoses, and home care plans, (b) in cases involving prolonged home care culminating in end-of-life decisions, the needs of nonprofessional caregivers must be recognized, evaluated, and addressed.
医疗行业的变化导致了一种转变，在很大程度上使患者处于管理自己医疗保健的地位。虽然自主是可取的，但它也会带来新的挑战，例如当重病和/或垂死的患者必须依赖家庭成员作为主要照顾者和治疗计划的管理者时。通常，患者及其家属缺乏医疗专业人员的指导和监督，无法协调由参与患者诊断和治疗的各种专家制定的多方面医疗方案。随着患者健康状况的恶化和治疗计划变得更加复杂，家庭照顾者的参与程度也会增加，他们通常不仅要提供床边护理，还要管理治疗计划。本文引用了一位女性的例子，她作为垂死丈夫的唯一照顾者感到筋疲力尽，并描述了她在医院环境中感到无能为力的感觉，因为她在临终决策时努力协调丈夫的医疗专家的帮助。这个案例说明了以下几点的重要性：(a) 在涉及需要多位专家提供复杂护理的住院患者的情况下，应该将招募医务社工作为标准做法，以对患者的状况、预后和家庭护理计划进行全面评估；(b) 在涉及以临终决策告终的长期家庭护理的情况下，必须认识、评估和解决非专业护理人员的需求。
