Palliative or end-of-life care is aimed at enhancing quality of life and reducing suffering for those with life-limiting illnesses. School of Nursing Professor Lisa Seto Nielsen led a scoping review, which synthesized research evidence, in collaboration with Ryerson University, Sunnybrook Hospital and the Hong Kong Polytechnic University. They discovered that undocumented immigrants were more likely to have delayed access to and inadequate palliative care.
“Although Canadians are proud of their universal health care system, it’s a misnomer because it isn’t universal. It is, some may say, discriminatory. While it implies that all healthcare services are available to everyone, free of charge, that’s not the case for undocumented immigrants, or individuals without legal status in Canada,” she says. “If palliative care is a human right, then it’s imperative that policies are put in place to better serve this vulnerable population at end-of-life,” she adds.
The findings of this research, funded by York University, were published in the article, “A Scoping Review of Undocumented Immigrants and Palliative Care: Implications for the Canadian Context,” in the Journal of Immigrant and Minority Health (2019).
Seto Nielsen, an associate in the York Centre for Asian Research, is an expert in this area. Her doctoral dissertation explored the palliative home care experiences of Chinese immigrants with advanced cancer in Toronto. Her current research focuses on palliative care, home care, death and dying, vulnerable groups, racialized immigrants and the healthcare system.
Restricted healthcare: a widespread issue among undocumented groups
The healthcare of undocumented groups is precarious to non-existent, and this is a world-wide problem. Up to 40 million undocumented immigrants suffer restricted healthcare on a global scale, according to the Migration Policy Institute.
Canada accepted almost 300,000 immigrants and refugees in 2016 (Organisation for Economic Co-operation and Development, 2018). While most enter the country legally some overstay their provisional visa, as in the case of temporary workers or international students. They lost their legal status and, with this, became undocumented immigrants.
Researchers sifted through numerous databases
The research team led by Seto Nielsen decided to do a scoping review. This kind of review synthesizes research evidence and groups together existing literature in a given field in terms of its nature, features and volume.
The key stages for this work were:
- Identify the research question: The end-of-life care experiences of undocumented immigrants.
- Identify the relevant studies: Here, the researchers combed through databases including CINAHL (Cumulative Index to Nursing and Allied Health Literature), Medline, ProQuest, Scopus and Social Science Abstracts. They also looked through databases such as the Canadian Health Research Collection, Canadian Public Policy Collection, Health Reports (Statistics Canada) and PHRED (Public Health Research, Education and Development). Search terms included “uninsured care,” “palliative care,” “undocumented immigrants” and “terminally ill.”
- Study selection: Studies were selected for consideration and possible inclusion if their titles and abstracts appeared to address undocumented immigrants and end-of-life care.
- Charting the data: The team looked at the type of source, such as a case study; the purpose; the methods; and the findings of the studies.
- Collating, summarizing and reporting the results.
In the end, a total of six articles met inclusion criteria. This, alone, would indicate that palliative care for immigrants is an under-researched field of study.
Key findings: Inadequacy of palliative care and barriers to this care
In studying the six articles, Seto Nielsen and her team found that undocumented immigrants were more likely to have delayed access to and inadequate palliative care. This is a fundamental gap in funding.
Barriers to palliative care included lack of advanced care planning, lack of health insurance, poverty, fear of deportation and limited English ability.
Research provides impetus for policy-makers to create pathways at institutional and national levels
Seto Nielsen hopes that this work will provide evidence for creating new policies that acknowledge the presence of undocumented immigrants and the need for palliative care. “Policy needs to be informed by data. In turn, it needs to create pathways to care, at the institutional level, and develop a national plan to address funding healthcare for this population,” she says.
She believes that it is imperative to open a dialogue on formal policy and funding to create pathways for providing care to non-citizens so that they can have access to palliative end-of-life care and a dignified death.
Seto Nielsen presses for more research that would include undocumented immigrants as participants to gain their perspective on experiences, such as satisfaction of care, continuity of care, collaborative relationships between patients and providers, and unmet needs.
To read the article, visit the Springer website. To learn more about Seto Nielsen, visit her Faculty profile page.
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By Megan Mueller, senior manager, Research Communications, Office of the Vice-President Research & Innovation, York University, muellerm@yorku.ca