Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team

BMC Palliative Care

Research

Holger Schulz¹  Anneke Ullrich²  Carsten Bokemeyer²  Karin Oechsle²  Katrin Kopplin-Foertsch³  Marten Müller⁴  Annette Rommel⁵  Denise Kirsch⁶  Bettina Wagener⁷  Sven Goldbach⁷  Wiebke Hollburg⁷ 

[1] Department of Medical Psychology, University Medical Center Eppendorf, Hamburg, Germany;Palliative Care Unit, Department of Oncology, Hematology and BMT, University Medical Center Eppendorf, Hamburg, Germany;Palliative care ward, Agaplesion Diakonie-Hospital, Hamburg, Germany;Palliative care ward, Asklepios Hospital Rissen, Hamburg, Germany;Specialist outpatient palliative care team ‘Das Palliativteam’, Hamburg, Germany;Specialist outpatient palliative care team ‘PCT Hamburg-West’, Hamburg, Germany;Specialist outpatient palliative care team ‘PalliativPartner Hamburg GbR’, Hamburg, Germany;

关键词: Specialist palliative care;    End-of-life care;    Multiprofessional team;    Family caregiver;    Palliative Care Outcome Scale;   

DOI  :  10.1186/s12904-023-01266-6

 received in 2022-06-30, accepted in 2023-09-20,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundSpecialist 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.MethodsUsing 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.ResultsProxy 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.ConclusionsThis 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.

【 授权许可】

CC BY   
© BioMed Central Ltd., part of Springer Nature 2023

【 图 表 】

Fig. 4