Pairing Self-Management with Palliative Care: Intervening in Life-Limiting Illness.
Pairing Self-Management with Palliative Care: Intervening in Life-Limiting Illness.
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DOI：
10.1111/j.1752-9824.2011.01083.x
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发表时间：
2011-03-01
期刊：
影响因子：
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通讯作者：
Tulsky, James A
中科院分区：
文献类型：
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作者：
Bailey, Donald E Jr;Steinhauser, Karen;Tulsky, James A
每年大约有250万美国人死亡，其中大多数人患有慢性疾病，如癌症、晚期心力衰竭和晚期肝病（Steinhauser et al. 2002）。这些患者在身体健康、社会心理认同、精神完整性和情感健康方面面临着复杂的挑战。不幸的是，在这些多维度的挑战中，许多人在很大程度上只能靠自己来驾驭这一过程，他们的需求由自己或家庭照顾者来照顾（Corbin & Strauss 1988）。患有限制生命的疾病的患者发现自己面临着生存和有限死亡率的双重状态（Steinhauser et al. 2000, Steinhauser et al. 2006a; Steinhauser et al. 2006b）。卫生保健提供者倾向于将这两种问题视为相互竞争的状态，而不是一个更大的矛盾整体，让患者在一个以分叉方式提供限制生命的疾病治疗的卫生保健系统中导航；一个是与疾病抗争，另一个是死亡。在现实中，大多数患者寻求拥抱生存的希望，尽可能活得好，同时承认时间可能有限。遗憾的是，患者在如何处理这种困境方面几乎没有得到指导。需要有系统的、以证据为基础的护理策略，包括对生存和生命终结的关注，并通过知识、技能和自我效能赋予患者权力。
Approximately 2.5 million Americans die each year, the majority of whom live with chronic illnesses that become life-limiting such as cancer, advanced heart failure, and end stage liver disease (Steinhauser et al. 2002). These patients confront complex challenges to their physical health, psychosocial identity, spiritual integrity, and emotional well-being. Unfortunately, amidst these multi-dimensional challenges, many are left to navigate this course largely on their own with their needs being tended to by themselves or a family caregiver (Corbin & Strauss 1988).Patients living with life-limiting illness find themselves confronting the dual states of survivorship and limited mortality (Steinhauser et al. 2000, Steinhauser et al. 2006a; Steinhauser et al. 2006b). Health care providers have tended to treat these two concerns as competing states rather than a larger paradoxical whole, leaving patients to navigate a health care system in which treatments for life-limiting illness are offered in a bifurcated fashion; one is either fighting disease or dying. In reality, most patients seek to embrace the hope of survivorship, living as well as possible, while acknowledging that time may be limited. Regrettably, patients receive little guidance on how to approach this dilemma. Needed are systematic, evidence-based strategies of care that incorporate concerns of both survivorship and end of life, and empower patients through knowledge, skills, and self-efficacy.