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从命运到悲剧:生命、死亡与艾滋病意义的变迁

From fate to tragedy: the changing meanings of life, death, and AIDS.

作者信息

Selwyn P A, Arnold R

机构信息

Yale School of Medicine, New Haven, Connecticut 06511-2483, USA.

出版信息

Ann Intern Med. 1998 Dec 1;129(11):899-902. doi: 10.7326/0003-4819-129-11_part_1-199812010-00012.

Abstract

The advent of highly active antiretroviral therapy (HAART) and quantitative viral load assays has revolutionized the care of HIV-infected patients. However, this paradigm shift has also had unexpected, sometimes adverse consequences that are not always obvious. Before antiretroviral therapy, physicians learned how to accompany patients through their illness; to bear witness to sickness and dying; and to help patients and their families with suffering, closure, and legacy. Since we have become better at treating the virus, a new temptation has emerged to dwell on quantitative aspects of HIV management and monitoring, although the skills that we learned earlier in the epidemic are no less necessary for providing good care. Our new-found therapeutic capabilities should not distract us from the sometimes more difficult and necessary task of simply "being there" for patients for whom HAART is no longer effective. The definition and practice of end-of-life care for patients with AIDS will continue to evolve as AIDS comes to resemble other chronic, treatable, but ultimately fatal illnesses, such as end-stage pulmonary disease and metastatic cancer, in which clinicians must continually readdress with their patients the balance of curative and palliative interventions as the disease process unfolds over time. The coming challenge in HIV care will be to encourage the maintenance of a "primary care" mentality-with attention to the larger psychosocial issues, end-of-life care, bereavement, and a focus on the patient as opposed to the illness-alongside our new antiretroviral paradigm. Otherwise, we run the risk of forgetting what we learned about healing, from a disease that we could not cure.

摘要

高效抗逆转录病毒疗法(HAART)和病毒载量定量检测的出现彻底改变了对HIV感染患者的治疗方式。然而,这种范式转变也带来了一些意想不到的、有时甚至是不良的后果,而这些后果并不总是显而易见的。在抗逆转录病毒疗法出现之前,医生们学会了如何陪伴患者度过疾病;见证疾病与死亡;并帮助患者及其家人应对痛苦、结束痛苦以及留下遗产。自从我们在治疗病毒方面变得更加擅长以来,一种新的诱惑出现了,即专注于HIV管理和监测的定量方面,尽管我们在疫情早期学到的技能对于提供良好的护理同样不可或缺。我们新获得的治疗能力不应使我们忽视有时更困难且必要的任务,即仅仅“陪伴在侧”,为那些HAART不再有效的患者提供帮助。随着艾滋病越来越类似于其他慢性、可治疗但最终致命的疾病,如终末期肺病和转移性癌症,艾滋病患者临终关怀的定义和实践将继续演变,在这些疾病中,随着疾病进程随时间展开,临床医生必须不断地与患者重新探讨治愈性干预和姑息性干预之间的平衡。HIV护理未来的挑战将是鼓励维持一种“初级护理”心态——关注更大范围的社会心理问题、临终关怀、丧亲之痛,并将重点放在患者而非疾病上——同时采用我们新的抗逆转录病毒范式。否则,我们有可能忘记从一种我们无法治愈的疾病中学到的关于治愈的知识。

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