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BMC Palliative Care
Published in: BMC Palliative Care 1/2023

Open Access 01-12-2023 | Care | Research

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

Authors: Anneke Ullrich, Sven Goldbach, Wiebke Hollburg, Bettina Wagener, Annette Rommel, Marten Müller, Denise Kirsch, Katrin Kopplin-Foertsch, Holger Schulz, Carsten Bokemeyer, Karin Oechsle

Published in: BMC Palliative Care | Issue 1/2023

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.
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Metadata
Title
Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team
Authors
Anneke Ullrich
Sven Goldbach
Wiebke Hollburg
Bettina Wagener
Annette Rommel
Marten Müller
Denise Kirsch
Katrin Kopplin-Foertsch
Holger Schulz
Carsten Bokemeyer
Karin Oechsle
Publication date
01-12-2023
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2023
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-023-01266-6

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