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BMC Palliative Care
Published in: BMC Palliative Care 1/2020

01-12-2020 | Addiction | Research article

Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience

Authors: Anne Ebenau, Boukje Dijkstra, Chantal ter Huurne, Jeroen Hasselaar, Kris Vissers, Marieke Groot

Published in: BMC Palliative Care | Issue 1/2020

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Abstract

Background

There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome).

Methods

A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach (‘Grounded Theory Lite’). SWOT-findings were not subjected to in-depth analysis.

Results

HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients’ multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized.

Conclusions

Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.
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Metadata
Title
Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience
Authors
Anne Ebenau
Boukje Dijkstra
Chantal ter Huurne
Jeroen Hasselaar
Kris Vissers
Marieke Groot
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-019-0502-x

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