Cambia Palliative Care Center of Excellence (D.G.D., E.L.N., R.A.E., N.K.), University of Washington, Harborview Medical Center, Seattle, Washington, USA; Department of Medicine, Division of Pulmonary (D.G.D., E.L.N., R.A.E.), Critical Care, & Sleep Medicine, University of Washington, Harborview Medical Center, Seattle, Washington, USA.
Department of Anesthesiology and Pain Medicine (C.C.P., N.K.), University of Washington, Harborview Medical Center, Seattle, Washington, USA.
J Pain Symptom Manage. 2024 Nov;68(5):e382-e391. doi: 10.1016/j.jpainsymman.2024.08.001. Epub 2024 Aug 13.
Seriously ill patients, such as those who experience critical illness, and their families experience a variety of poor outcomes, including financial hardship. However, little is known about the ways in which these seriously ill patients and their families experience financial hardship.
To examine seriously ill patients' and families' experiences of financial hardship and perspectives on addressing these concerns during and after critical illness.
We conducted a thematic analysis of semi-structured interviews with seriously ill patients who recently experienced a critical care hospitalization (n=15) and family caregivers of these patients (n=18).
Our analysis revealed three themes: 1) Prioritizing Survival and Recovery; 2) Living with Uncertainty-including experiences of prolonged uncertainty, navigating bureaucratic barriers, and long-term worries; and 3) Preferences for Financial Guidance. Our results suggest patients and families prioritize survival over financial hardship initially, and feelings of uncertainty about finances persist. However, patients and family caregivers are reluctant to have their physicians address financial hardship.
Our findings suggest that the acute and time sensitive nature of treatment decisions in critical care settings provides a unique context for experiences of financial hardship. Additional research is needed to better understand these experiences and design context-sensitive interventions to mitigate financial hardship and associated poor patient- and family-centered outcomes.
重病患者，如经历重症的患者，及其家属会经历各种不良后果，包括经济困难。然而，对于这些重病患者及其家属经历经济困难的方式，我们知之甚少。
探讨重病患者及其家属在重症期间和之后经历经济困难的情况，以及他们对解决这些问题的看法。
我们对最近经历过重症监护住院治疗的 15 名重病患者和这些患者的 18 名家属进行了半结构化访谈，并对访谈内容进行了主题分析。
我们的分析揭示了三个主题：1）优先考虑生存和康复；2）生活在不确定性中，包括经历长时间的不确定性、应对官僚主义障碍和长期担忧；3）对财务指导的偏好。研究结果表明，患者和家属最初优先考虑生存而不是经济困难，对财务的不确定感持续存在。然而，患者和家属照顾者不愿意让他们的医生来解决经济困难。
我们的研究结果表明，重症监护治疗决策的急性和时间敏感性为经济困难的体验提供了一个独特的背景。需要进一步的研究来更好地了解这些体验，并设计针对具体情况的干预措施，以减轻经济困难和相关的以患者和家庭为中心的不良后果。
