Hostname: page-component-cd9895bd7-fscjk Total loading time: 0 Render date: 2024-12-27T10:57:42.119Z Has data issue: false hasContentIssue false
  • English
  • Français

What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital

Published online by Cambridge University Press:  08 July 2014

Karen E. Steinhauser ,
Corrine I. Voils ,
Hayden Bosworth  and
James A. Tulsky
Karen E. Steinhauser*
Affiliation:
Center for Health Services Research in Primary Care, Duke University, Durham, North Carolina Durham VA Medical Center, Durham, North Carolina Division of General Internal Medicine, Duke University School of Medicine, Durham, North Carolina Center for Palliative Care, Duke University School of Medicine, Durham, North Carolina Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina
Corrine I. Voils
Affiliation:
Center for Health Services Research in Primary Care, Duke University, Durham, North Carolina Durham VA Medical Center, Durham, North Carolina
Hayden Bosworth
Affiliation:
Center for Health Services Research in Primary Care, Duke University, Durham, North Carolina Durham VA Medical Center, Durham, North Carolina Division of General Internal Medicine, Duke University School of Medicine, Durham, North Carolina
James A. Tulsky
Affiliation:
Center for Health Services Research in Primary Care, Duke University, Durham, North Carolina Durham VA Medical Center, Durham, North Carolina Division of General Internal Medicine, Duke University School of Medicine, Durham, North Carolina Center for Palliative Care, Duke University School of Medicine, Durham, North Carolina Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina School of Nursing, Duke University, Durham, North Carolina
*
Address correspondence and reprint requests to: Karen Steinhauser, Center for Palliative Care, VA and Duke Medical Centers, 2424 Erwin Road, Suite 1105, Box 2720, Durham, North Carolina 27705. E-mail: karen.steinhauser@duke.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients.

Method:

We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings.

Results:

Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services.

Significance of results:

Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.

Keywords

Palliative careCaregivingQuality of life
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 4 , August 2015 , pp. 945 - 952
Copyright
Copyright © Cambridge University Press 2014 

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

Azoulay, E., Pochard, F., Chevret, S., et al. (2003). Family participation in care to the critically ill: Opinions of families and staff. Intensive Care Medicine, 29(9), 1498–1504.Google Scholar
Back, A.L., Arnold, R.M., Baile, W.F., et al. (2007). Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Archives of Internal Medicine, 167(5), 453–460.CrossRefGoogle ScholarPubMed
Casarett, D., Fishman, J., O'Dwyer, P.J., et al. (2008). How should we design supportive cancer care? The patient's perspective. Journal of Clinical Oncology, 26(8), 1296–1301.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(24), 5520–5525.CrossRefGoogle ScholarPubMed
Corbin, J. & Strauss, A. (1993). Methods of qualitative research. Thousand Oaks, CA: Sage Publications.Google Scholar
Curtis, J.R., Engelberg, R.A., Wenrich, M.D., et al. (2002). Studying communication about end-of-life care during the ICU family conference: Development of a framework. Journal of Critical Care, 17(3), 147–160.Google Scholar
Fratorolli, J. (2006). Experimental disclosure and its moderators: A meta-analysis. Psychological Bulletin, 132(6), 823–865.Google Scholar
Funk, L., Stajduhar, K., Toye, C., et al. (2010). Home-based family caregiving at the end of life, part 2: A comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24(6), 594–607.Google Scholar
Koropchak, C.M., Pollak, K.I., Arnold, R.M., et al. (2006). Studying communication in oncologist–patient encounters: The SCOPE trial. Palliative Medicine, 20(8), 813–819.CrossRefGoogle ScholarPubMed
Krueger, R. (1994). Focus groups: A practical guide for applied research, 2nd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
Skinner, C.S., Pollak, K.I., Farrell, D., et al. (2009). Use of and reactions to a tailored CD-ROM designed to enhance oncologist–patient communication: The SCOPE trial intervention. Patient Education and Counseling, 77(1), 90–96.Google Scholar
Stajduhar, K., Funk, L., Toye, C., et al. (2010). Home-based family caregiving at the end of life, part 1: A comprehensive review of published quantitative research (1998–2008). Palliative Medicine, 24(6), 573–593.Google Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10), 825–832.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2001). Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. Journal of Pain and Symptom Management, 22(3), 727–737.Google Scholar
Steinhauser, K.E., Bosworth, H.B., Clipp, E.C., et al. (2002). Initial assessment of a new instrument to measure quality of life at the end of life. Journal of Palliative Medicine, 5(6), 829–841.Google Scholar
Steinhauser, K.E., Clipp, E.C., Bosworth, H.B., et al. (2004). Measuring quality of life at the end of life: Validating the QUAL–E. Palliative & Supportive Care, 2(2), 3–14.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Alexander, S.C., Byock, I.R., et al. (2008). Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? A pilot randomized control trial. Journal of Palliative Medicine, 11(9), 1234–1240.Google Scholar
Stern, P. (1985). Using grounded theory method in nursing research. In Qualitative research methods in nursing. Leininger, M. (ed.), pp. 148–160. Orlando: Grune & Stratton.Google Scholar