Abstract
BackgroundSystematic 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.MethodsData-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.ResultsNine 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.ConclusionsThis 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.
Highlights
Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce
The patients were recruited by healthcare professionals (HCPs) who were specialized in SUD and had, at least, generic knowledge of PC
Patient and proxy characteristics During recruitment, thirty patients were found potentially eligible for inclusion, of whom nine were eventually included
Summary
Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. People with SUD have an increased risk of developing chronic or life-threatening conditions and of mortality [9,10,11,12,13,14,15] and, might be in need for palliative care (PC). It is surprising, that systematic research on such care for this patient-group is absent and that the size of this patient-group is hardly known [16,17,18]. Exclusion from research, could mean that healthcare needs of patients with SUD+ are under-recognized [30]
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