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.

Background Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients’ care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase. Methods Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed. Results Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the ‘here-and-the-now’); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies’ experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients. Conclusions This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients’ closed and avoiding communication. Furthermore, some of patients’ EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed. Electronic supplementary material The online version of this article (10.1186/s12904-019-0443-4) contains supplementary material, which is available to authorized users.

BackgroundThe specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals’ responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals’, patients’ and proxies’ perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder.MethodsA qualitative study with patients, proxies and healthcare professionals. Semi-structured interviews will be held with 10–15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi-structured interviews will also be held with 5–10 proxies. Healthcare professionals, volunteers and/or ‘experts-by-experience’ (n = 24–40) will be participating in semi-structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings.DiscussionEveryone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0351-z) contains supplementary material, which is available to authorized users.

No abstract