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Hospice staff members' views on conducting end-of-life research

Published online by Cambridge University Press:  12 May 2005

KENNETH L. KIRSH ,
ROBERT WALKER ,
SUSAN SNIDER ,
SHERRI WEISENFLUH ,
GRETCHEN M. BROWN  and
STEVEN D. PASSIK
KENNETH L. KIRSH
Affiliation:
Symptom Management and Palliative Care Program, Markey Cancer Center, University of Kentucky, Lexington, Kentucky
ROBERT WALKER
Affiliation:
Center on Drug and Alcohol Research, University of Kentucky, Lexington, Kentucky
SUSAN SNIDER
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
SHERRI WEISENFLUH
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
GRETCHEN M. BROWN
Affiliation:
Hospice of the Bluegrass, Lexington, Kentucky
STEVEN D. PASSIK
Affiliation:
Symptom Management and Palliative Care Program, Markey Cancer Center, University of Kentucky, Lexington, Kentucky
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Abstract

Objective: Hospice staff members have concerns about the appropriateness of enrolling terminally ill people in research studies. These concerns can have profound implications for the advancement of palliative and hospice care as they can impede the empirical investigation of interventions for improving the quality of life of patients with advanced disease. This survey study was designed to examine hospice staff attitudes, beliefs, and values about research with their patients and family members.

Methods: This study utilized a cross-sectional, anonymous survey design to measure hospice staff members' beliefs, attitudes, and values. The survey contained questions derived by hospice and palliative care experts from their experience and review of the literature. It was handed out at staff meetings and returned via mail. The survey contained 14 questions and was able to be completed in less than 5 min.

Results: A total of 225 participants (56.25% response rate) completed the survey and were included in the data analysis. Hospice staff members were largely supportive about the idea of conducting research with patients and family members (mean agreement of 4.08–4.44 on several perception items about research on a 1–5 scale). They also acknowledged a mixture of being protective of controlling access to patients (52% wanted to be the ones to approach patients) and not having enough time for research (59% either had no time or would be willing to spend no more than 10 min on research).

Significance of results: Although many of the opinions derived from the survey appear to indicate a willingness to embrace research in a hospice setting, significant barriers, especially time constraints and protective attitudes, remain. Educational efforts and firsthand involvement in the research process might be a useful first step in attempting to address these barriers and traditionally held beliefs against using hospice patients and families in research.

Keywords

HospiceStaff perceptionsResearch
Type
Research Article
Information
Palliative & Supportive Care , Volume 2 , Issue 3 , September 2004 , pp. 273 - 282
Copyright
© 2004 Cambridge University Press

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References

REFERENCES

Addington-Hall, J. (2002). Research sensitivities to palliative care patients. European Journal of Cancer Care, 11, 220–224.Google Scholar
Berg, J.W., Appelbaum, P.S., Lidz, & C.W., et al. (2001). Informed Consent: Legal Theory and Clinical Practice. New York: Oxford University Press.
Bruera, E. (1994). Ethical issues in palliative care research. Journal of Palliative Care, 10, 7–9.Google Scholar
Casarett, D.J. & Karlawish, J.H.T. (2000). Are special ethical guidelines needed for palliative care research? Journal of Pain and Symptom Management, 20, 130–139.Google Scholar
Clark, T.J., Khan, K.S., & Gupta, K.J. (2001). Effect of paper quality on the response rate to a postal survey: A randomised controlled trial. BMC Medical Research Methodology, 1, 12–15.Google Scholar
Daugherty, C.K., Kiolbasa, T.A., Siegler, & M., et al. (1997). Informed consent in research: A study of cancer patient understanding of consent forms and alternatives of care in phase I clinical trials. Proceedings of the Annual Meeting of the American Society of Clinical Oncology, p. 16 (A188).
de Raeve, L. (1994). Ethical issues in palliative care research. Palliative Medicine, 8, 298–305.Google Scholar
Drought, T.S. & Koenig, B.A. (2002). “Choice” in end of life decision making: Researching fact or fiction? The Gerontologist, 42, 114–128.Google Scholar
Dunn, C.M. & Chadwick, G. (2001). Protecting Study Volunteers in Research—A Manual for Investigative Sites. Boston, MA: Center Watch, Inc.
Fowler, F.J., Jr., Gallagher, P.M., Stringfellow, & V.L., et al. (2002). Using telephone interviews to reduce nonresponse bias to mail surveys of health plan members. Medical Care, 40, 190–200.Google Scholar
Grisso, T. & Applebaum, P.S. (1995). The MacArthur treatment competence study, III: Abilities of patients to consent to psychiatric and medical treatments. Law and Human Behavior, 19, 149–174.Google Scholar
Groves, R. (1989). Survey Errors and Survey Costs. New York: Wiley.
Groves, R. & Couper, M. (1998). Nonresponse in Household Interview Surveys. New York: Wiley.
Hermann, C. & Looney, S. (2001). The effectiveness of symptom management in hospice patients during the last seven days of life. Journal of Hospice and Palliative Nursing, 3, 88–96.Google Scholar
Hudson, P. (2003). The experience of research participation for family caregivers of palliative care cancer patients. International Journal of Palliative Nursing, 9, 120–123.Google Scholar
Janssens, R. & Gordijn, B. (2000). Clinical trials in palliative care: An ethical evaluation. Patient Education and Counseling, 41, 55–62.Google Scholar
Jubb, A.M. (2002). Palliative care research: Trading ethics for an evidence base. Journal of Medical Ethics, 28, 342–347.Google Scholar
Kristjanson, L., Hanson, E.J., & Balneaves, L. (1994). Research in palliative care populations: Ethical issues. Journal of Palliative Care, 10, 10–15.Google Scholar
Maloney, D.M. (2003). University admits research proceeded without review by an institutional review board (IRB). Human Research Report, 18, 6–7.Google Scholar
McWilliams, R., Hoover-Fong, J., Hamosh, & A., et al. (2003). Problematic variation in local institutional review of a multicenter genetic epidemiology study. Journal of the American Medical Association, 290, 360–366.Google Scholar
Michels, R. (2004). Research on persons with impaired decision making and the public trust. American Journal of Psychiatry, 151, 777–779.Google Scholar
Mount, B.M., Cohen, R., MacDonald, & N., et al. (1995). Ethical issues in palliative care revisited. Palliative Medicine, 9, 165–170.Google Scholar
Pellegrino, E.D. (1998). The necessity, promise, and dangers of human experimentation. In On Moral Medicine: Theological Perspectives in Medical Ethics, S.E. Lammers, A. Verhey (eds.), pp. 890–902.
Ross, C. & Cornbleet, M. (2003). Attitudes of patients and staff to research in a specialist palliative care unit. Palliative Medicine, 17, 491–497.Google Scholar
Sunshine, J.H. & Bansal, S. (1995). Professional and business characteristics of radiology groups in the United States: 1992. Radiology, 194, 365–371.Google Scholar
Thyer, B.A. & Myers, L.L. (1998). Supporting the client's right to effective treatment: Touching a raw nerve? Social Work, 43, 87–91.Google Scholar
Truog, R. (2003). Dying patients as research subjects. The Hastings Center Report, 33. 3.Google Scholar
Wagner, R.M. (2003). Ethical review of research involving human subjects: When and why is IRB review necessary? Muscle and Nerve, 28, 27–39.Google Scholar
Wirshing, D.A., Wirshing, W.C., Marder, & S.R., et al. (1998). Informed consent: Assessment of comprehension. American Journal of Psychiatry, 155, 1508–1511.Google Scholar
Vega-Stromberg, T., Holmes, S.B., Gorski, & L., et al. (2002). Road to excellence in pain management: Research, outcome and direction (ROAD). Journal of Nursing Care Quality, 17, 15–29.Google Scholar