Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Eppendorf, Hamburg, Germany.
Specialist outpatient palliative care team 'PalliativPartner Hamburg GbR', Hamburg, Germany.
BMC Palliat Care. 2023 Oct 10;22(1):153. doi: 10.1186/s12904-023-01266-6.
Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers.
Using the Palliative Care Outcome Scale (POS; Score 0-40), proxy assessments of SPC outcomes in the patient's last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved 'particularly well' or 'inadequately' (last 7 days), which were content analyzed and quantified.
Proxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were 'not wasted time' (team 99%/family caregivers 87%), 'information' (84%/47%) and 'support' (53%/31%). Items rated as most affected (= 4) were 'patient anxiety' (31%/51%), 'life not worthwhile' (26%/35%) and 'no self-worth' (19%/30%). Both groups indicated more problems solved 'particularly well' than 'inadequately'; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care.
This study shows the range and type of symptoms and other concerns reported in the patient's last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.
专科姑息治疗（SPC）包括在家中或姑息治疗病房为绝症患者及其家庭照顾者提供护理，直至生命的最后一刻。然而，在生命的最后几天，患者几乎无法表达自己的需求，多学科 SPC 团队和家庭照顾者报告的 SPC 结果知之甚少。
使用姑息治疗结局量表（POS；评分 0-40），SPC 团队和 3 个家庭护理和 3 个住院服务的主要家庭照顾者对患者生命的最后 3 天进行了 SPC 结局的代理评估。还询问了有关“特别好”或“不充分”解决的问题（过去 7 天），对这些问题进行了内容分析和量化。
142 名患者（其中 51%在家中死亡）的 SPC 团队代理评估结果可用。这些患者中有 60 名的家庭照顾者评估结果存在。SPC 团队（POS 总分：平均 13.8，SD 6.3）报告的 SPC 结果略好于家庭照顾者（平均 16.7，SD 6.8）。POS 项目始终被 SPC 团队和家庭照顾者评为受影响最小（=0）的项目包括“不浪费时间”（团队 99%/家庭照顾者 87%）、“信息”（84%/47%）和“支持”（53%/31%）。被评为受影响最大（=4）的项目包括“患者焦虑”（31%/51%）、“生活不值得”（26%/35%）和“无自我价值”（19%/30%）。两组均表示解决了更多的问题“特别好”而不是“不充分”；后者主要涉及临终关怀和家庭照顾者护理中众所周知的临床挑战。
本研究展示了患者最后几天报告的症状和其他问题的范围和类型。确定了进一步改善家庭照顾者护理以及心理社会和精神问题的起点。
