Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: "let me live the way I want to live, until I can't".

Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: "let me live the way I want to live, until I can't".
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克服晚期艾滋病毒/艾滋病治疗与姑息治疗的错误二分法:“让我按照我想要的方式生活,直到我不能为止”。

DOI:
10.1001/jama.290.6.806
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发表时间:
2003
期刊:
JAMA
影响因子:
--
通讯作者:
M. Forstein
M. Forstein
中科院分区:
--
文献类型:
--
作者:
P. Selwyn;M. Forstein

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人体免疫缺陷病毒(艾滋病毒)治疗的最新进展大大降低了发达世界与艾滋病毒有关的死亡率,但死亡率已趋于稳定,艾滋病仍然是年轻人严重疾病和死亡的主要原因。随着时间的推移,艾滋病毒病程的慢性性质以及与艾滋病毒有关的累积发病率和与治疗有关的毒性作用的日益加重的负担,对患者的护理提出了新的挑战。对预后的不确定性以及快速发展的治疗方法的承诺和局限性使得关于提前护理计划和临终问题的决策比病程更均匀,快速和可预测时更加复杂和难以捉摸。作为治疗基石的高效抗逆转录病毒疗法这一新兴生物医学模式有助于将艾滋病毒转变为一种可管理的慢性疾病,但与此同时,却导致重点更加狭窄,并导致对艾滋病毒/艾滋病患者的针对具体疾病的“治愈性”护理和针对具体疾病的“姑息性”护理事实上分离。随着患者在进行性艾滋病毒疾病的后期生存时间延长,他们实际上可能越来越需要全面的症状管理以及广泛的社会心理,家庭和护理计划支持。在高效抗逆转录病毒疗法时代,对艾滋病毒/艾滋病患者的治疗与姑息治疗的错误二分法必须被一种更综合的模式所取代,为晚期艾滋病毒患者及其家人提供全面的护理。
Recent advances in human immunodeficiency virus (HIV) therapy have significantly reduced HIV-related mortality in the developed world, but mortality rates have plateaued, and AIDS remains a leading cause of serious illness and death for young adults. The chronic nature of the HIV disease course and the increasing burden of cumulative HIV-related morbidity and treatment-related toxic effects pose new challenges to the care of patients over time. Uncertainties about prognosis and the promise and limitations of rapidly evolving therapies have made decision making about advance care planning and end-of-life issues more complex and elusive than when the disease course was more uniform, rapid, and predictable. The emerging biomedical paradigm of highly active antiretroviral therapy (HAART) as the cornerstone of treatment has helped to transform HIV into a manageable chronic disease, yet at the same time has resulted in a more narrow focus and a de facto separation between disease-specific "curative" and symptom-specific "palliative" care for patients with HIV/AIDS. As patients survive longer in the latter stages of progressive HIV disease, they may in fact have increasing need for comprehensive symptom management as well as wide-ranging need for psychosocial, family, and care planning support. In the HAART era, the false dichotomy of curative vs palliative care for patients with HIV/AIDS must be supplanted by a more integrated model to provide comprehensive care for patients with advanced HIV disease and their families.
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