Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-24T13:35:10.519Z Has data issue: false hasContentIssue false

Confirmation of the “disability paradox” among hospice patients: Preservation of quality of life despite physical ailments and psychosocial concerns

Published online by Cambridge University Press:  26 February 2004

JEAN S. KUTNER
Affiliation:
Division of General Internal Medicine, University of Colorado Health Sciences Center, Denver, Colorado
DAVID E. NOWELS
Affiliation:
Department of Family Medicine, University of Colorado Health Sciences Center, Denver, Colorado
CORDT T. KASSNER
Affiliation:
Division of General Internal Medicine, University of Colorado Health Sciences Center, Denver, Colorado
JANET HOUSER
Affiliation:
Department of Health Services Administration, Regis University, Denver, Colorado
LUCINDA L. BRYANT,
Affiliation:
Center for Health Services Research, University of Colorado Health Sciences Center, Denver, Colorado
DEBORAH S. MAIN
Affiliation:
Department of Family Medicine, University of Colorado Health Sciences Center, Denver, Colorado Colorado Health Outcomes Program, University of Colorado Health Sciences Center, Denver, Colorado

Abstract

Objective: The purpose of this study was to describe quality of life (QOL) and psychosocial and spiritual issues among patients receiving hospice care.

Methods: A questionnaire addressing QOL, spirituality, optimism, loss, fears about the terminal process and death anxiety was administered to 66 adults receiving care from 14 hospices. The physical components of QOL (physical symptoms and physical well-being) were rated lower than the psychosocial and spiritual aspects (support, existential well-being, psychological symptoms).

Results: Respondents had a strong spiritual connection and a strong sense of hope. Although these individuals did not express anxiety or fear about death, there were concerns about the dying process itself. Also, although most felt at ease with their current situation, respondents were concerned about how their illness was affecting their family. Financial and legal issues did not concern most of these individuals.

Significance of results: There were few significant associations between patient characteristics and the QOL or other psychosocial or spiritual issues addressed. Among this older terminally ill population receiving hospice care, whose functional status was fair and for whom physical symptoms were troublesome, QOL persisted and a positive outlook prevailed.

Type
Research Article
Copyright
© 2003 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Bretscher, M., Rummans, T., Sloan, & J., et al. (1999). Quality of life in hospice patients: A pilot study. Psychosomatics, 40, 309313.Google Scholar
Bryant, L.L., Corbett, K.K., & Kutner, J.S. (2001). In their own words: A model of healthy aging. Social Science and Medicine, 53, 927941.Google Scholar
Carr, A.J., Gibson, B., & Robinson, P.G. (2001). Is quality of life determined by expectations or experience? BMJ (London), 322, 12401243.Google Scholar
Carr, A.J. & Higginson, I.J. (2001). Are quality of life measures patient-centered? BMJ (London), 322, 13571360.Google Scholar
Cohen, S.R., Boston, P., Mount, & B.M., et al. (2001). Changes in quality of life following admission to palliative care units. Palliative Medicine, 15, 363371.Google Scholar
Cohen, S.R. & Leis, A. (2002). What determines the quality of life of terminally ill cancer patients from their perspective? Journal of Palliative Care, 18, 4858.Google Scholar
Cohen, S.R. & Mount, B.M. (2000). Living with cancer: “Good” days and “bad” days—what produces them? Cancer, 89, 18541865.Google Scholar
Cohen, S.R., Mount, B.M., Bruera, & E., et al. (1997). Validity of the McGill quality of life questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliative Medicine, 11, 320.Google Scholar
Donnelley, S. (2000). Quality-of-life assessment in advanced cancer. Current Oncology Reports, 2, 338342.Google Scholar
Emanuel, L.L., Alpert, H.R., & Emanuel, E.J. (2001). Concise screening questions for clinical assessments of terminal care: The needs near the end-of-life care screening tool. Journal of Palliative Medicine, 4, 465474.Google Scholar
Greer, D.S. & Mor, V. (1986). An overview of national hospice study findings. Journal of Chronic Diseases, 39, 57.Google Scholar
Greer, D.S., Mor, V., Morris, & J.N., et al. (1986). An alternative in terminal care: Results of the national hospice study. Journal of Chronic Diseases, 39, 926.Google Scholar
Guo, H., Fine, P.G., Mendoza, & T.R., et al. (2001). A preliminary study of the utility of the brief hospice inventory. Journal of Pain and Symptom Management, 22, 637648.Google Scholar
Hatch, R.L., Burg, M.A., Naberhaus, & D.S., et al. (1998). The spiritual involvement and beliefs scale. Development and testing of a new instrument. Journal of Family Practice, 46, 476486.Google Scholar
Hermann, C.P. (2001). Spiritual needs of dying patients: A qualitative study. Oncology Nursing Forum, 28, 6772.Google Scholar
Herth, K. (1992). Abbreviated instrument to measure hope: Development and psychometric evaluation. Journal of Advanced Nursing, 17, 12511259.Google Scholar
Kaasa, S. (2001). Assessment of quality of life in palliative care. Journal of Palliative Medicine, 4, 413416.Google Scholar
Kutner, J.S., Kassner, C.T., & Nowels, D.E. (2001). Symptom burden at the end of life: Hospice providers' perceptions. Journal of Pain & Symptom Management, 21, 473480.Google Scholar
Kutner, J.S., Steiner, J.F., Corbett, & K.K., et al. (1999). Information needs in terminal illness. Social Science and Medicine, 48, 13411352.Google Scholar
Lo, R.S.K., Woo, J., Zhoc, & K.C.H., et al. (2002). Quality of life of palliative care patients in the last two weeks of life. Journal of Pain and Symptom Management, 24, 388397.Google Scholar
Millison, M.B. & Dudley, J.R. (1992). Providing spiritual support: A job for all hospice professionals. Hospice Journal, 8, 4966.Google Scholar
Mor, V., Laliberte, L., Morris, & J.N., et al. (1984). The Karnofsky performance status scale. An examination of its reliability and validity in a research setting. Cancer, 53, 20022007.Google Scholar
Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatrics Society, 23, 433441.Google Scholar
Redinbaugh, E.M., Baum, A., DeMoss, & C., et al. (2002). Factors associated with the accuracy of family caregiver estimates of patient pain. Journal of Pain & Symptom Management, 23, 3138.Google Scholar
Reese, D.J. & Brown, D.R. (1997). Psychosocial and spiritual care in hospice: Differences between nursing, social work, and clergy. Hospice Journal, 21, 2941.Google Scholar
Shalowitz, M.U., Berry, C.A., Rasinski, & K.A., et al. (1998). A new measure of contemporary life stress: Development, validation, and reliability of the CRISYS. Health Services Research, 33, 13811402.Google Scholar
Skevington, S.M., Carse, M.S., & Williams, A.C.C. (2001). Validation of the WHOQOL-100: Pain management improves quality of life for chronic pain patients. Clinical Journal of Pain, 17, 264275.Google Scholar
Steinhauser, K.E., Christakis, N.A., Clipp, & E.C., et al. (2000a). Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA, 284, 24762482.Google Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, & M., et al. (2000b). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825832.Google Scholar
Sulmasy, D.P. (2001). Addressing the religious and spiritual needs of dying patients. Western Journal of Medicine, 175, 251254.Google Scholar
Thomson, J.E. (2000). The place of spiritual well-being in hospice patients' overall quality of life. Hospice Journal, 15, 1327.Google Scholar
Thorson, J.A. & Powell, F.C. (1992). A revised death anxiety scale. Death Studies, 16, 507521.Google Scholar
Tierney, R.M., Horton, S.M., Hannan, & T.J., et al. (1998). Relationships between symptom relief, quality of life, and satisfaction with hospice care. Palliative Medicine, 12, 333344.Google Scholar