Abstract
BackgroundPeople experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care.MethodsQualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively.ResultsThree key themes were: ‘late access’, ‘capricious trajectory’ and ‘complex care’. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network.ConclusionsThe care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness.
Highlights
People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives
In the Netherlands, ill people experiencing homelessness often stay in special shelters at the end of their lives, which can be seen as their ‘home’
Design Qualitative interviews were held with people experiencing homelessness at the end of life, as well as with people who were close to them at the end of life
Summary
People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care. The United Nations states that health facilities, goods and services must be accessible to all, especially the most vulnerable or marginalized sections of the population [1]. In the Netherlands, ill people experiencing homelessness often stay in special shelters at the end of their lives, which can be seen as their ‘home’. There are temporary shelters for those who are ill or frail, nursing home wards, and shelters offering hospice care
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