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J R Soc Med. 2001 September; 94(9): 456–457.
PMCID: PMC1282186

Workgroup 1: Access

In our workgroup, access to palliative care was discussed in the context of access to healthcare in general. At first it seemed, because of the great differences in healthcare financing and organization, that there would be marked differences between the USA and the UK regarding access to palliative care. But as discussion proceeded it became clear that ethnic populations, immigrants, those with substance abuse problems and those whose first language was not English faced somewhat similar barriers in the two settings.

The balance of discussion was directed to better defining access needs of the socially excluded and to exploring models and ideas for ways to overcome barriers to care.

UK

Participants from the UK identified concerns specific to their system. These included the gatekeeping role of general practitioners (GPs) and the variable familiarity of GPs with palliative care and/or HIV. Additionally, in the UK much palliative care is provided through the voluntary sector; development and support of such institutions is considerably more difficult in poor neighbourhoods than in rich ones. Thus, some areas may not have adequate palliative care services. Out-of-hours care varies across the country. Discrepancies may exist even when someone is properly referred for palliative care services. These include prejudice, lack of cultural understanding on the part of the providers as well as lack of understanding of palliative care on the part of patients and their families. Advocacy was seen as important here.

Models of local good practice were identified, including Cancer Black Care, outreach from individual hospices such as Mildmay and St Christopher's, and initiatives in Bradford creating a ‘healthy action zone’ that targeted socially excluded communities. In addition, the Calman-Hine report specifies that all cancer centres should provide palliative care services.

US

Poor access to healthcare in general in the US is a pervasive problem extending from prevention through primary care to end-of-life care. Access to palliative care, therefore, must be discussed in this context. Racial disparities exist in health outcomes for conditions including HIV/AIDS, cancer and pain management. Additionally, the history of experiments (e.g. Tuskegee) performed on unknowing African-Americans in the 1950s has created an atmosphere of suspicion which makes acceptance of palliative care difficult.

Although there is no right to healthcare in the USA (except for the incarcerated), a Supreme Court Decision on physician-assisted suicide has been widely interpreted as implying that a strong presence of palliative care would preclude the need for legalization of such suicide.

The Ryan White CARE Program (a federally supported HIV care scheme) provides for the development and support of a large number of innovative models of care, treatment and education and was seen as an important model for addressing access to healthcare issues.

Additionally, largely because of the manner in which palliative care is financed in the US (Medicare hospice benefit), palliative care is equated with end-of-life or terminal care. This makes the transition from curative to palliative care unduly abrupt.

Issues in common

In both the US and the UK many socially excluded populations, particularly those coming from countries lacking primary care, seek general care through emergency departments, which are not the most appropriate place in which to plan and manage chronic and palliative care. Therefore patients may not receive optimal referral to specialty care.

The lack of diversity in the palliative care workforce was also seen as an obstacle to progress.

In both the US and the UK, among ethnic and minority communities the diagnosis of HIV/AIDS may carry a stigma that further complicates access to both HIV and palliative care.

In many different ethnic languages there is no direct translation for palliative care. However, the experience of Cancer Black Care and others was that the idea of palliative care is much embraced when explained to people in these communities.

Action steps

  • Increase the philanthropic support for innovative gap plugging services, and for research on these, to improve access to care. If successful they should be adopted by mainstream care
  • Ensure that services are based within and staffed by the relevant communities
  • Use developments in improved access for disadvantaged groups to palliative care to address the broader issues of improving access to healthcare from prevention to end-of-life care
  • Create (or improve) and disseminate standards of palliative care with particular reference to access
  • Develop academic posts and medical units in under-served areas and support research directed to better understanding of these issues.
  • Invest in research to identify the needs for, and possible reasons for low uptake of, palliative care within disadvantaged groups; and use the findings to improve access.


Articles from Journal of the Royal Society of Medicine are provided here courtesy of Royal Society of Medicine Press