Access to palliative care for homeless people: complex lives, complex care

Veer, A.J.E. de; Stringer, Barbara; Meijel, Berno van; Verkaik, Renate; Francké, Anneke L.

doi:10.1186/s12904-018-0368-3

Cited by 41 publications

(65 citation statements)

References 32 publications

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“…3,5,6 At the end-of-life, people experiencing structural vulnerability face significant barriers in accessing care. 4,11 Findings from our previous work indicates that barriers to care for these populations include the need to prioritize daily survival, the normalization of death and dying in their lives, problems associated with recognizing the need for palliative care, policies regarding professional risk and safety management, and disjointed health and social care systems. 5 In addition, Ko et al 10 found that homeless adults avoid seeking medical care at end-of-life out of fear of discrimination and being viewed as unworthy of treatment.…”

Section: Introductionmentioning

confidence: 99%

“…Inequities experienced by structurally vulnerable populations become particularly pronounced at the end-of-life. 1 – 12 The concept of structural vulnerability is aligned with a social determinants of health perspective, but builds upon it to capture the wider range of social and structural forces that produce and reinforce inequities, constrain agency and opportunities, and amplify vulnerability to risk, harm and poor health. 13 , 14 Structural vulnerability, therefore, is the product of one’s location within the social hierarchy, where relationships of power are embedded, 15 and encompasses not only political and economic inequalities, but also a wider range of cultural determinants (e.g.…”

Section: Introductionmentioning

confidence: 99%

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Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

et al. 2020

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Background: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. ‘Family’ caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding ‘who’ caregivers are in this context and what their experiences may be. Aim: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. Design: Critical ethnography. Setting/participants: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. Results: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. Conclusion: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how ‘family’ is defined in this context is needed.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

et al. 2020

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“…Our study confirms previous findings that compared to the general population, homeless people die younger 1 – 11 and have complex comorbidities and a high symptom burden at the end of life. 19 – 22 , 24 , 34 – 37 Although the end of life was recognised for three-quarters of the homeless persons in our study, it was difficult to specifically predict prognoses and identify palliative care needs: whereas some patients revived prodigiously, others deteriorated rapidly once admitted to the shelter-based nursing care setting. This finding corroborates qualitative studies indicating that healthcare professionals experience end-of-life trajectories of homeless people to be especially capricious.…”

Section: Discussionmentioning

confidence: 72%

“…This finding corroborates qualitative studies indicating that healthcare professionals experience end-of-life trajectories of homeless people to be especially capricious. 17 – 19 , 21 , 22 …”

Section: Discussionmentioning

confidence: 99%

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

Dongen

Klop²,

Veer

et al. 2020

Palliat Med

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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.

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“…For this reason, it is worrisome that the PC phase for patients with SUD+ is often identified too late. This trend is recognized within the literature for the homeless people, too [29,31,60]. Therefore, it might be useful to develop an identification tool for this patient group or to adapt existing tools, like the PALLI for patients with intellectual disability or the Vulnerability index for homeless people [61,62].…”

Section: Practice and Educational Implicationsmentioning

confidence: 95%

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

et al. 2020

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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.

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Access to palliative care for homeless people: complex lives, complex care

Cited by 41 publications

References 32 publications

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

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

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

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