Palliative care for vulnerable populations

Abstract

Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.

Advocacy at the End of Life: Meeting the Needs of Vulnerable Latino Patients

“…In health care settings, providers identify vulnerable individuals as those who lack health insurance, preventive care, and/or the socioeconomic means to manage their medical condition. According to Stienstra and Chochinov (2012), vulnerability in EOL care is a universal, human experience that is also socially constructed, with some individuals experiencing more vulnerability than others because of previous circumstances-such as poverty, disability, and/or immigrant status-that contribute to differential treatment or the exclusion of medical care by some health care providers. These health disparities play a role in poor treatment outcomes and contribute to high mortality rates (Institute of Medicine, 2003).…”

Providing end‐of‐life care in disability community living services: An organizational capacity‐building model using a public health approach

“…to prepare for end of life are noticeably absent (Botsford, 2000;Cross et al, 2012;Tuffrey-Wijne et al, 2015). The principles of public health emphasize the importance of advocating for health equality in populations that are or have been 'created vulnerable' through social structures (Stienstra & Chochinov, 2012;WHO, 2008). For service strategies at the end of life to be sustainable, systemic change must address the structural, cultural and practical dimensions of care provision.…”

“…Structural constraints (Reimer‐Kirkham et al., ) for people with intellectual disabilities at the end of life include a lack of policy providing the opportunity to die well (Baumrucker, Sheldon, Oertli, & VandeKieft, ), insufficient collaboration between disability and palliative services (Cross, Cameron, Marsh, & Tuffrey‐Wijne, ; Michael & Richardson, ; Ryan & McQuillan, ; Stienstra & Chochinov, ), late detection and diagnosis of illness (Tuffrey‐Wijne, ; Tuffrey‐Wijne, Hogg, & Curfs, ; Ward, Nichols, & Freedman, ), diagnostic overshadowing (attributing symptoms of disease to the disability, hence failing to treat) (Reiss & Syzszko, ), social and emotional exclusion from one's own experience of dying (Botsford, ; Tuffrey‐Wijne, Bernal, Hubert, Butler, & Hollins, ), inequitable access to palliative care services (Friedman et al., ; McEnhill, ; Michael & Richardson, ; Stienstra, D'Aubin, & Derksen, ; Tuffrey‐Wijne, Curfs, et al. ; Tuffrey‐Wijne, Whelton, et al., ) and the unwillingness or inability of palliative care services to tailor delivery to the needs of vulnerable populations (Stienstra & Chochinov, ). These systemic challenges disrupt the connections with people, places and possessions that are important for people with intellectual disabilities at the end of their lives.…”

“…Yet despite the fact that there is an increasing proportion of people with intellectual disabilities who are ageing (Botsford, ; World Health Organization, ), both palliative care services (Heslop et al., ; Reimer‐Kirkham et al., ) and disability service policy and planning to prepare for end of life are noticeably absent (Botsford, ; Cross et al., ; Tuffrey‐Wijne et al., ). The principles of public health emphasize the importance of advocating for health equality in populations that are or have been ‘created vulnerable’ through social structures (Stienstra & Chochinov, ; Stienstra et al., ; WHO, ). For service strategies at the end of life to be sustainable, systemic change must address the structural, cultural and practical dimensions of care provision.…”

“…of disease to the disability, hence failing to treat) (Reiss & Syzszko, 1983), social and emotional exclusion from one's own experience of dying (Botsford, 2000;Tuffrey-Wijne, Bernal, Hubert, Butler, & Hollins, 2009), inequitable access to palliative care services (Friedman et al, 2012;McEnhill, 2013;Michael & Richardson, 2008;Stienstra, D'Aubin, & Derksen, 2012;Tuffrey-Wijne, Whelton, et al, 2008) and the unwillingness or inability of palliative care services to tailor delivery to the needs of vulnerable populations (Stienstra & Chochinov, 2012). These systemic challenges disrupt the connections with people, places and possessions that are important for people with intellectual disabilities at the end of their lives.…”