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J R Soc Med. 2001 September; 94(9): 484–485.
PMCID: PMC1282195

Workgroup 4: research

Danielle M Goodwin, MSc RGN, K Marconi, PhD MS,1 and Joan Teno, MD MS2

The workgroup condensed the main research issues into three broad questions, with an emphasis on obtaining timely results and identifying matters that might lend themselves to joint exploration in the USA and the UK.

Question 1: What are the research priorities for delivery of palliative care to under-served and socially excluded populations?

  • UK and US health databases should be ‘mined’ for existing information on access problems for under-served and socially excluded populations
  • Difficulties exist in defining care at the end of life, compounded in the USA by the system of reimbursement. We should therefore consider a measurement of provider influences on access
  • This area should include a review of existing models of care and the evidence of success or failure among specific under-served populations in geographic areas (rural, inner city). How does access to care differ by setting? How does the quality of care differ by setting? An intriguing issue is the extent to which palliative care lengthens life and increases the need for health resources
  • Changes in the HIV disease trajectory must be evaluated in relation to palliative care decision-making. This should also include reasons why people choose to stop curative or life maintaining therapy, such as HIV pharmaceuticals or renal dialysis, and the role of advance directives
  • We need to evaluate the attitudes of palliative care towards under-served groups, and strategies to improve attitudes and access.

Question 2: Are there currently funded research projects in each country that may have applicability for the other country?

Place of death has been studied in both countries. Teno, in the USA, examined all deaths by zip code [www.chcr.brown.edu/web-pubs.htm]. Higginson and co-workers, in the UK, analysed all cancer deaths by region and by diagnosis1 and conducted a literature review of place of care in advanced cancer2. Higginson et al. have also done a systematic review of the clinical and cost effectiveness of palliative care teams (now accepted as a Cochrane Review)3. The results indicate some small benefit in patient and carer outcomes. This is across a range of services, although more data exist for home-care services. There appears to be some substitution of home care costs for hospital costs, mainly by reducing the number of inpatient days. An ongoing project at King's College, London, is PROMOTE, which aims to develop methods of regular monitoring of the quality of care for terminally ill patients. The methods include focus groups and interviews conducted in various healthcare settings, and one purpose is to find out how to measure in a culturally sensitive way [www.kcl.ac.uk/kis/schools/kcsmd/palliative/top.htm]. At Brown University in the USA, a ‘mortality fall-back survey’ will include qualitative analyses [www.chcr.brown.edu/web-pubs.htm]. The Health Resources and Services Administration has mounted palliative care demonstration projects addressing the homeless and under-served populations in rural, urban, and correctional health settings [http://hab.hrsa.gov/evaluation.html]. The challenge is to evaluate findings from projects such as these that may have use in both countries.

Question 3: Are there areas of methods development that should be addressed by the UK and US?

Systematic reviews are needed to identify qualitative and quantitative measurement issues that require development.

The limited number of successful randomized controlled trials may reflect the particular methodological difficulties palliative care poses for trial design. Problems of recruitment, attrition and the vulnerability of patient groups make randomized controlled trials difficult. Retrospective studies have a place, but there is a need for more prospective studies with comparison groups. Alternative methods such as economic modelling should be considered.

As regards measurement there is a strong case for evaluation of existing indices rather than development of tools specific for palliative care and HIV/AIDS. The best method may be to use core items of a tool with add-on questions depending on the setting or target audience. But caution is needed because inclusion of ‘closure issues’ (sensitive questions) within cognitive questionnaires can be upsetting. Another consideration is whose view one takes when assessing outcomes—the patient, the carer or the healthcare professional?

The group stressed the integration of research findings with clinical care for under-served and socially excluded populations. Scientific findings should improve access to palliative care, the clinical quality of such care, and its integration with curative care and community support services.

We then identified joint US/UK projects for the short term (1 year) and the longer term (5 years). For the next twelve months the following were proposed:

  • Mine the data (e.g. mortality files, hospital discharge data) in relation to patterns of service—palliative care/outcomes/under-served/socially excluded
  • Conduct systematic reviews of evidence-based advanced planning for healthcare interventions
  • Conduct ethnographic studies (e.g. focus groups) on how differing communities access end-of-life care and define barriers to care
  • Revalidate existing tools for this population (palliative care)
  • Organize UK-US exchanges of postdoctoral students, fellowships, paired postdoctoral experiences.

In the next 5 years:

  • Conduct a prospective cohort study to define illness (especially for HIV/AIDS patients), construct functional trajectory models to define criteria for decision-making, and identify the main determinants of palliative treatment decisions
  • Compare receipt of palliative care versus non-palliative care in relation to survival and quality of life, to understand the interplay of race, social class and the community—how the community impacts on treatment decisions
  • Organize community intervention demonstrations to reduce identified access barriers; examine differences between the US and the UK in treatment decisions
  • Mount a prospective cohort study from diagnosis of advanced disease to death, studying the cost/quality of life and quality of care/advanced care planning
  • Evaluate approaches to delivering palliative care for recent immigrants.

References

1. Higginson IJ, Astin P, Dolan S. Where do cancer patients die? Ten year trends in the place of death of cancer patients in England. Pall Med 1998;12: 353-63 [PubMed]
2. Higginson IJ, Sen-Gupta G. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Pall Med 2000;3: 287-300 [PubMed]
3. Higginson IJ, Finlay I, Goodwin DM, et al. The role of palliative care teams: a systematic review of their effectiveness and cost-erffectiveness (in press).

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