Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies

被引:13
作者
Ebenau, Anne [1 ,3 ]
Dijkstra, Boukje [2 ]
ter Huurne, Chantal [4 ]
Hasselaar, Jeroen [1 ]
Vissers, Kris [1 ]
Groot, Marieke [1 ]
机构
[1] Radboud Univ Nijmegen, Med Ctr Radboudumc, Ctr Palliat Care, Dept Anaesthesiol Pain & Palliat Care Expertise, Internal Post 549,POB 9101, NL-6500 HB Nijmegen, Netherlands
[2] Radboud Univ Nijmegen, NISPA, Postbus 9104, NL-6500 HE Nijmegen, Netherlands
[3] Salvat Army, Zandvoortweg 211, NL-3741 BE Baarn, Netherlands
[4] Tactus Addict Care, Locat Ripperdastr,Ripperdastr 8, NL-7511 JR Enschede, Netherlands
关键词
Qualitative study; Palliative care; End-of-life; Terminal care; Substance use disorder; Addiction; Patients; Proxies; DRUG-DEPENDENCE; ADVANCED CANCER; ADDICTION; NEED; DEATH; HOMELESSNESS; MORTALITY; OUTCOMES; ILLNESS; HEALTH;
D O I
10.1186/s12904-019-0443-4
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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 withthe 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.
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页数:12
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