Palliative care for patients with a substance use disorder and multiple problems: a study protocol

Abstract

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.

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

“…The COREQ (COnsolidated criteria for REporting Qualitative research) checklist was used to guide this publication [37]. An extensive description of the methodology and design of this study has been published previously [13].…”

“…Studies show that the little attention that there is for PC for patients with SUD, mainly focuses on 'prescription drug abuse', dependence-producing medicines (mainly opioids), pain management, and alcohol abuse within PC phases [10][11][12][13][14]. Furthermore, reports and studies about patients with pre-existing SUD in a PC phase often lack attention to the psychological, social and spiritual domains and are short on scientific empirical rigor.…”

“…Furthermore, reports and studies about patients with pre-existing SUD in a PC phase often lack attention to the psychological, social and spiritual domains and are short on scientific empirical rigor. They are based on one case, are non-replicable or reflect only authors' opinions [13,14]. Such literature demonstrates that factors, such as, non-compliance to treatment, symptom expression and representation, non-disclosure of substance use, and stigma jeopardize good PC for patients with SUD.…”

“…Such purposive sampling, furthermore, enabled inclusion of participants from different regions of the Netherlands (south, middle and western parts), which was needed to grasp a potential variety in the organization of PC for patients with SUD+ within the country. Different recruiting strategies were described in the protocol article of this study [13]. Refusal of participation was not counted.…”

“…Also, the researchers believed that caring for these patients makes a great impact and as a consequence, HCP/VE are well-aware of their experiences and well-capable in recapitulating these. We focused on PC for patients with severe SUD (six or more symptoms, on DSM-V criteria [43]) and multiple problems, suffering from a somatic, irreversible life-threatening disease/co-morbidity or from severe physical deterioration as a result of ongoing, chronic SUD without the prospect of cure [13].…”