Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-27T11:32:02.789Z Has data issue: false hasContentIssue false
  • English
  • Français

Can short hospice enrollment be long enough? Comparing the perspectives of hospice professionals and family caregivers

Published online by Cambridge University Press:  13 February 2009

Deborah P. Waldrop  and
Elaine S. Rinfrette
Deborah P. Waldrop*
Affiliation:
University at Buffalo School of Social Work, Buffalo, New York
Elaine S. Rinfrette
Affiliation:
University at Buffalo School of Social Work, Buffalo, New York
*
Address correspondence and reprint request to: Deborah Waldrop, University at Buffalo School of Social Work, 633 Baldy Hall, Box 601050, Buffalo, NY 14260-1050. E-mail: dwaldrop@buffalo.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Hospice utilization lasting for 2 weeks or less before death is considered “short.” Short, late-stage hospice admissions have been viewed as inadequate for providing end-stage symptom management, maximal comfort, and a comprehensive focus on life closure and as an underutilization of the Medicare Hospice Benefit. The purpose of this study was to explore psychosocial dynamics during late-stage hospice admissions by comparing the perspectives of hospice professionals and family caregivers. Salutogenic principles and concepts from Antonovsky's Sense of Coherence Theory (SOC) guided the inquiry.

Methods:

This exploratory, descriptive study involved a developmental design. First, hospice professionals' perspectives about psychosocial dynamics commonly observed in late-stage admissions were gathered. Themes were distilled into a Psychosocial Factors Checklist (PFC). Second, interviews that incorporated open-ended questions and the PFC were conducted with 56 family caregivers of hospice patients who died from cancer within 2 weeks of admission. Participant responses were transcribed and entered into Atlas ti software for data management and coding. Responses to the PFC were clustered around the SOC constructs (manageability, comprehensibility, meaningfulness) to create corresponding subscales. Interitem correlations were conducted to explore the associations among items.

Results:

Late-stage admissions were a crisis (54%), chaotic (43%), emotional (80%), and a time of open communication (80%) and meaningful conversations (73%). Hospice utilization was “just long enough” (49%) and “too short” (49%). The Manageability subscale (M = 4.09) suggested that caregivers experienced moderate difficulty. Manageability included physical challenges, emotional responses, informational needs, and benefits/resources. Comprehensibility emerged from medical results, visual signs, and hospice guidance. Meaningfulness was personal-individual, family-shared, and spiritual-existential.

Significance of results:

Hospice professionals and caregivers view late-stage admissions differently; they are a crisis for some but not all families. The development of a quick assessment tool for late-stage admissions has the potential for meaningful and effective intervention when time is of the essence.

Keywords

HospiceLate-stage admissionsShort hospice utilizationSense of coherence
Type
Original Articles
Information
Palliative & Supportive Care , Volume 7 , Issue 1 , March 2009 , pp. 37 - 47
Copyright
Copyright © Cambridge University Press 2009

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

Andershed, B. (2004). Relatives in end-of-life care—Part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.CrossRefGoogle Scholar
Andershed, B. (2006). Relatives in end-of-life care-part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.CrossRefGoogle ScholarPubMed
Andershed, B. & Ternestedt, B.M. (1998). The illness trajectory—for patients with cancer who died in two different cultures of care. Omega, 37, 251–272.Google Scholar
Andershed, B. & Ternestedt, B.M. (2000). Being a close relative of a dying person: Development of the concepts “involvement in the light and in the dark.” Cancer Nursing, 23, 151–159.Google Scholar
Antonovsky, A. (1987). Unraveling the Mystery of Health: How People Manage Stress and Stay Well. Hoboken, NJ: Jossey Bass.Google Scholar
Berg, B.L. (1995). Qualitative Research Methods for the Social Sciences. Boston: Allyn & Bacon.Google Scholar
Block, S.D. (2006). Psychological issues in end-of-life care. Journal of Palliative Medicine, 9, 751–772.CrossRefGoogle ScholarPubMed
Breitbart, W. & Payne, D. (2000). Psychiatric aspects of pain management in patients with advanced cancer and AIDS. In Chochinov, H.M. & Breitbart, W. (Eds.), Handbook of Psychiatry in Palliative Medicine. New York: Oxford University Press.Google Scholar
Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23, 5520–5525.CrossRefGoogle ScholarPubMed
Christakis, N.A. (1994). Timing of referral of terminally ill patients to an outpatient hospice. Journal of General Internal Medicine, 9, 314–320.Google Scholar
Cooper, B., Kinsella, G.J., & Picton, C. (2006). Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psycho-Oncology, 15, 613–622.Google Scholar
Cowley, S. & Billings, J. (1999). Resources revisited: Salutogenesis from a lay perspective. Journal of Advanced Nursing, 29, 994–1004.Google Scholar
Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science and Medicine, 45, 1207–1221.Google Scholar
Grbich, C., Parker, D., & Maddocks, I. (2001). The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care, 17, 30–36.Google Scholar
Gustavsson-Lilius, M., Julkunen, J., Keskivaara, P., et al. (2007). Sense of coherence and distress in cancer patients and their partners. Psycho-Oncology, 16, 1100–1110.CrossRefGoogle ScholarPubMed
Heaven, C.M. & McGuire, P. (1998). The relationship between patients' concerns and psychological distress in a hospice setting. Psycho-Oncology, 7, 502–507.Google Scholar
Hospice Foundation of America (2006). Hospice facts and statistics. http://www.nahc.org/hospicefs06.pdf.Google Scholar
Johnson, M. (2004). Approaching the salutogenesis of sense of coherence: The role of ‘active’ self-esteem and coping. British Journal of Health Psychology, 9, 419–432.CrossRefGoogle ScholarPubMed
King, D.A. & Quill, T. (2006). Working with families in palliative care: One size does not fit all. Journal of Palliative Medicine, 9, 704–715.Google Scholar
Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic Inquiry. Thousand Oaks, CA: Sage.Google Scholar
Lindstrom, B. & Eriksson, M. (2005). Salutogenesis. Journal of Epidemiology and Community Health, 59, 440–442.Google Scholar
McGuire, D.B. (2004). Occurrence of cancer pain. Journal of the National Cancer Institute Monographs, 32, 51–56.Google Scholar
McMillan, S.C. (2005). Interventions to facilitate family caregiving at the end of life. Journal of Palliative Medicine, 8(Suppl 1), S132–S139.CrossRefGoogle ScholarPubMed
Milberg, A. & Strang, P. (2003). Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin. Palliative and Supportive Care, 1, 171–180.Google Scholar
Milberg, A. & Strang, P. (2004). Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers. Psycho-Oncology, 13, 605–618.Google Scholar
Milberg, A. & Strang, P. (2007). What to do when ‘there is nothing more to do’? A study within a salutogenic framework of family members' experience of palliative home care staff. Psycho-Oncology, 16, 741–751.CrossRefGoogle Scholar
Milberg, A., Strang, P., & Jakobsson, M. (2004). Next of kin's experience of powerlessness and helplessness in palliative home care. Supportive Care in Cancer, 12, 120–128.Google Scholar
Miles, M.B. & Huberman, A.M. (1994). Qualitative Data Analysis, 2nd ed.Thousand Oaks, CA: Sage.Google Scholar
Miller, S.C., Kinzbrunner, B., Pettit, P., et al. (2003 a). How does the timing of hospice referral influence hospice care in the last days of life? Journal of the American Geriatrics Society, 51, 798–806.Google Scholar
Miller, S.C., Weitzen, S., & Kinzbrunner, B. (2003 b). Factors associated with the high prevalence of short hospice stays. Journal of Palliative Medicine, 6, 725–736.CrossRefGoogle ScholarPubMed
National Center for Health Statistics. NCHS Dateline (2004). Available at http://www.publichealthreports.org/userfiles/119_1/119099.pdf.Google Scholar
National Hospice and Palliative Care Organization. NHPCO's facts and figures (2006). Available at http://www.nhpco.org/files/public/2006-facts-and-figures.pdf.Google Scholar
Padgett, D.K. (1998). Qualitative Methods in Social Work Research. Thousand Oaks, CA: Sage.Google Scholar
Patton, M.Q. (2002). Designing qualitative studies. In Qualitative Research & Evaluation Methods, pp. 230–243. Thousand Oaks, CA: Sage.Google Scholar
Stang, S. & Strang, P. (2001). Spiritual thoughts, coping and “sense of coherence” in brain tumour patients and their spouses. Palliative Medicine, 15(2), 127–156.CrossRefGoogle Scholar
Schockett, E.R., Teno, J.M., Miller, S.C., et al. (2005). Late referral to hospice and bereaved family member perception of quality of end-of-life care. Journal of Pain & Symptom Management, 30, 400–407.CrossRefGoogle ScholarPubMed
Taylor, C. (2004). Improving referral of patients to hospice through community physician outreach. Journal of Pain & Symptom Management, 28, 294–295.Google Scholar
Teno, J.M., Shu, J.E., Casarett, D., et al. (2007). Timing of referral to hospice and quality of care: Length of stay and bereaved family members' perceptions of the timing of hospice referral. Journal of Pain & Symptom Management, 34, 120–125.Google Scholar
Teno, J.M., Weitzen, S., Fennell, M.L., et al. (2001). Dying trajectory in the last year of life: Does cancer trajectory fit other diseases? Journal of Palliative Medicine, 4, 457–464.CrossRefGoogle ScholarPubMed
Wellisch, D.K. (2005). Family issues and palliative care. In Chochinov, H.M. & Breitbart, W. (Eds.), Handbook of Psychiatry in Palliative Medicine. New York: Oxford.Google Scholar
White, C. (2004). Meaning and its measurement in psychosocial oncology. Psycho-Oncology, 13, 468–481.Google Scholar