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Cited by 4Palliative Care and End-of-Life IssuesPalliative and Oncologic CarePain Management and Opioid Use

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

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Ullrich, Anneke, Goldbach, Sven, Hollburg, Wiebke, Wagener, Bettina, Rommel, Annette, Müller, Marten, Kirsch, Denise, Kopplin-Foertsch, Katrin +3 more·2023·BMC Palliative Care
DOI 10.1186/s12904-023-01266-6PMC PMC10563273
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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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  • Enhancing communication and collaboration between different healthcare institutions and family caregivers can optimise information transfer and team cooperation, thereby improving the continuity and quality of care.

    “Enhancing communication and collaboration between different healthcare institutions and family caregivers can optimise information transfer and team cooperation, thereby improving the continuity and quality of care [38].”

    From Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study (2024) · cites this paper as [38]

    The Discussion and Conclusion (pages unavailable) encourage close communication between specialist palliative care teams and family caregivers to better address patients’ needs in their last days. The paper does not address collaboration between different healthcare institutions or show that improved information transfer and team cooperation improve continuity of care. (LLM, conf=0.86)

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Authors
Ullrich, A., Goldbach, S., Hollburg, W., Wagener, B., Rommel, A., Müller, M., Kirsch, D., Kopplin-Foertsch, K., Schulz, H., Bokemeyer, C., & Oechsle, K.
Affiliations
  • University Medical Center Hamburg-Eppendorf (DE)
  • Asklepios (DE)
  • Pathologie Hamburg-West (DE)
Corresponding author
Ullrich, Anneke
ORCID
Venue
BMC Palliative Care
Publisher
Springer Science and Business Media LLC
Published
2023-10-10
Volume
22
Issue
1
Pages
153-153
ISSN
1472-684X (ISSN-L)
DOI
10.1186/s12904-023-01266-6
PMC
PMC10563273
OpenAlex
W4387442685
Cited by
4
References
47
Citations by year
2025: 2 · 2024: 2
FWCI
1.02
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Palliative Care (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
Universitätsklinikum Hamburg-Eppendorf (UKE)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Anesthesiology and Pain Medicine › Pain Management and Opioid Use
Keywords
specialist palliative care, end-of-life care, last days of life, family caregivers, proxy assessment, Palliative Care Outcome Scale, home care, inpatient palliative care, patient anxiety
MeSH terms
Death, Home Care Services, Humans, Palliative Care, Quality of Life, Caregivers

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