Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
J Pain Symptom Manage. 2020 Jan;59(1):172-177. doi: 10.1016/j.jpainsymman.2019.02.025. Epub 2019 Mar 1.
Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such "transformative experiences" for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.
预先医疗照护计划已被证实能改善病患的预后，因此被推荐作为绝症病患常规治疗的一环。然而，为患者及其家属，以及支持他们的临床医生制定预先医疗照护计划可能既复杂又具挑战性。其中一个复杂性在于，没有亲身经历，就很难深入了解疾病及其治疗方法。在本文中，我们探讨了这个观点，强调了生活经历如何导致个人价值观和偏好的不可预测变化。我们使用晚期肾病患者简的假设案例研究来探讨这种“变革性体验”对预先医疗照护计划的影响。最后，我们考虑了对临床实践的影响，以及对变革性体验的理解如何增强当前预先医疗照护计划方法。
