End-of-life care for homeless people in shelter-based nursing care settings: A retrospective record study.

BACKGROUND: Homeless people experience multiple health problems and early mortality. In the Netherlands, they can get shelter-based end-of-life care, but shelters are predominantly focused on temporary accommodation and recovery. AIM: To examine the characteristics of homeless people who reside at the end-of-life in shelter-based nursing care settings and the challenges in the end-of-life care provided to them. DESIGN: A retrospective record study using both quantitative and qualitative analysis methods. SETTING/PARTICIPANTS: Two Dutch shelter-based nursing care settings. We included 61 homeless patients who died between 2009 and 2016. RESULTS: Most patients had somatic (98%), psychiatric (84%) and addiction problems (90%). For 75% of the patients, the end of life was recognised and documented; this occurred 0-1253 days before death. For 26%, a palliative care team was consulted in the year before death. In the three months before death, 45% had at least three transitions, mainly to hospitals. Sixty-five percent of the patients died in the shelter, 27% in a hospital and 3% in a hospice. A quarter of all patients were known to have died alone. Documented care difficulties concerned continuity of care, social and environmental safety, patient-professional communication and medical-pharmacological alleviation of suffering. CONCLUSIONS: End-of-life care for homeless persons residing in shelter-based nursing care settings is characterised and challenged by comorbidities, uncertain prognoses, complicated social circumstances and many transitions to other settings. Multilevel end-of-life care improvements, including increased interdisciplinary collaboration, are needed to reduce transitions and suffering of this vulnerable population at the end of life.

How do doctors in the Netherlands perceive the impact of disciplinary procedures and disclosure of disciplinary measures on their professional practice, health and career opportunities? A questionnaire among medical doctors who received a disciplinary measure.

INTRODUCTION: Disciplinary procedures can have serious consequences for the health, personal life and professional functioning of doctors. Until recently, specific disciplinary measures (reprimands) were publicly disclosed in the Netherlands. The perceived additional impact of disclosing reprimands on the professional and personal life of doctors is unclear. METHODS: All doctors who received a disciplinary measure from the Dutch Disciplinary Board between July 2012 and August 2016 were invited to partake in a 60-item questionnaire concerning the respondents' characteristics, the complaint, experience with the procedure and perceived impact of the procedure on health and professional functioning as reported by doctors themselves. The response rate was 43% (n=210). 21.4% received a reprimand (disclosed); the remainder received a warning (not disclosed). Differences between the two groups were calculated. RESULTS: Respondents with a reprimand reported significantly more negative experiences and impact on health and work than respondents with a warning. 37.8% of the doctors said their health was very good. A small percentage reported moderate-to-severe depressive complaints (3.6%), moderate-to-severe anxiety disorder (2%) or indications of burnout (10.8%). The majority reported changes in their professional practices associated with 'defensive medicine', such as doing more supplementary research (41%) and complying more with patients' wishes (35%). CONCLUSION: The Dutch disciplinary procedure has strong negative side effects, that disclosing measures seems to increase. Dutch disciplinary law aims to contribute to the quality of professional practice. A safe environment is a basic condition for quality improvement and therefore, disclosure of disciplinary measures should be carefully considered. Disclosure of disciplinary measures has always been controversial and the results of this study has rekindled this debate. Recently, a majority in the Dutch House of Representatives has voted against disclosure of reprimands, leaving disclosure of reprimands a discretion of the disciplinary board when deemed appropriate or necessary.

Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study.

BACKGROUND: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research. AIM: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands. DESIGN: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers. SETTING/PARTICIPANTS: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice. RESULTS: Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences. CONCLUSION: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.