1 School of Journalism, Media and Culture, Cardiff University, Cardiff, UK.
2 Independent Scholar, York, UK.
Palliat Med. 2018 Jul;32(7):1180-1188. doi: 10.1177/0269216318766430. Epub 2018 Mar 23.
Families of patients in vegetative or minimally conscious states are often horrified by the suggestion of withdrawing a feeding tube, even when they believe that their relative would not have wanted to be maintained in their current condition. Very little is known about what it is like to witness such a death.
To understand these families' experience of their relatives' deaths.
Qualitative study using in-depth narrative interviews analyzed inductively with thematic analysis.
A total of 21 people (from 12 families) whose vegetative or minimally conscious relative died following court-authorized withdrawal of artificial nutrition and hydration. All had supported treatment withdrawal.
Interviewees were usually anxious in advance about the nature of the death and had sometimes confronted resistance from, and been provided with misinformation by, healthcare staff in long-term care settings. However, they overwhelmingly described deaths as peaceful and sometimes even as a "good death." There was (for some) a significant "burden of witness" associated with the length of time it took the person to die and/or distressing changes in their appearance. Most continued to voice ethical objections to the manner of death while considering it "the least worst" option in the circumstances.
Staff need to be aware of the distinctive issues around care for this patient group and their families. It is important to challenge misinformation and initiate honest discussions about feeding-tube withdrawal and end-of-life care for these patients. Families (and staff) need better support in managing the "burden of witness" associated with these deaths.
处于植物人或最小意识状态的患者的家属常常对拔除饲管的建议感到恐惧，即使他们认为患者本人不愿意处于目前的状态。对于目睹亲人这样去世的感受，我们知之甚少。
了解家属在目睹亲人去世时的体验。
采用深度叙事访谈的定性研究，采用主题分析进行归纳分析。
共有 21 人（来自 12 个家庭），其处于植物人或最小意识状态的亲属在经过法庭授权后停止人工营养和水合作用后死亡。所有受访者都支持停止治疗。
受访者通常在死亡前感到焦虑，并且在长期护理机构中，有时会面临医护人员的抵触，并被提供错误信息。然而，他们绝大多数都描述死亡是平静的，有时甚至是“善终”。对于那些死亡过程持续时间较长或患者外貌出现令人痛苦的变化的人来说，存在（对某些人来说）显著的“见证负担”。大多数人继续对死亡方式提出道德上的反对意见，同时认为在这种情况下，这是“最不坏”的选择。
医护人员需要意识到照顾这组患者及其家属的独特问题。重要的是要挑战错误信息，并就这些患者的饲管拔出和临终关怀问题进行坦诚的讨论。家属（和医护人员）需要更好地支持来应对与这些死亡相关的“见证负担”。
