患有绝症的人的个人遗愿是什么？一项在专科姑息治疗中进行的纵向观察研究的结果。
What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care.
机构信息
Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Hamburg-Eppendorf, 20246, Hamburg, Germany.
Specialist Outpatient Palliative Care Team "PalliativPartner Hamburg GbR", Hamburg, Germany.
出版信息
BMC Palliat Care. 2022 Mar 22;21(1):38. doi: 10.1186/s12904-022-00928-1.
BACKGROUND
Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC).
AIMS
To explore the presence and common themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish.
METHODS
Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t) and within the first 6 weeks (follow-up, t) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t-t) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis.
RESULTS
Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t, and 130 at t. In cross-sectional analyses, the presence of last wishes was higher at t (67%) than at t (59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t (78% vs. 62%; p = .002), but not at t. Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t. Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t (31%) and t (39%). Themes did not differ between SPC settings, neither at t nor at t. Longitudinal analyses (t-t) showed no significant intra-personal changes in the presence or any themes of last wishes over time.
CONCLUSIONS
In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients' last wishes, rather than setting-specific approaches, may be important.
背景
面临生命末期疾病的个人的最后遗愿可能会在接近死亡时发生变化，并且可能因不同形式的专科姑息治疗（SPC）而有所不同。
目的
探讨在 SPC 设置（住院与居家 SPC）中，随着时间的推移最后遗愿的存在和常见主题，并确定与拥有最后遗愿相关的因素。
方法
纳入纵向研究的患者在 SPC 开始时（基线，t）和最初 6 周内（随访，t）完成包括个人最后遗愿的开放式问题的问卷。对最后遗愿进行内容分析，并对每个确定主题的存在或缺失对所有遗愿进行编码。通过 McNemar 检验分析最后遗愿的变化（t-t）。卡方检验用于比较两种 SPC 设置。通过逻辑回归分析确定存在最后遗愿的预测因素。
结果
361 名患者（平均年龄 69.5 岁；49%为女性）在 t 时回答了问卷，130 名患者在 t 时回答了问卷。在横断面分析中，t 时存在最后遗愿的比例（67%）高于 t 时（59%）。比较结果显示，t 时住院患者的最后遗愿存在率高于居家 SPC 患者（78%比 62%；p=0.002），而 t 时并非如此。住院 SPC（OR=1.987，p=0.011）和过去一周身体症状负担增加（OR=1.168，p<0.001）预测 t 时存在最后遗愿。最后遗愿的常见主题包括旅行、活动、恢复健康、生活质量、与家人和朋友在一起、舒适地死亡、时光倒流和处理最后事务。最常见的主题是旅行，t 时（31%）和 t 时（39%）均如此。在 SPC 设置中，无论在 t 时还是 t 时，主题都没有差异。纵向分析（t-t）显示，在个人存在或最后遗愿的任何主题方面，随着时间的推移都没有显著的个体内变化。
结论
在疾病的晚期阶段，许多患者表达了最后遗愿。我们的研究表明，将这些遗愿作为以人为本的护理框架是有益的。对 SPC 设置的比较表明，针对患者最后遗愿的个体化方法可能比特定于设置的方法更为重要。
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