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

  • Karen E. Steinhauser (a1) (a2) (a3) (a4) (a5), Corrine I. Voils (a1) (a2), Hayden Bosworth (a1) (a2) (a3) and James A. Tulsky (a1) (a2) (a3) (a4) (a5) (a6)

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.

Copyright

Corresponding author

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

References

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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), 14981504.
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), 453460.
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), 12961301.
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), 55205525.
Corbin, J. & Strauss, A. (1993). Methods of qualitative research. Thousand Oaks, CA: Sage Publications.
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), 147160.
Fratorolli, J. (2006). Experimental disclosure and its moderators: A meta-analysis. Psychological Bulletin, 132(6), 823865.
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), 594607.
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), 813819.
Krueger, R. (1994). Focus groups: A practical guide for applied research, 2nd ed. Thousand Oaks, CA: Sage Publications.
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), 9096.
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), 573593.
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), 825832.
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), 727737.
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), 829841.
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), 314.
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), 12341240.
Stern, P. (1985). Using grounded theory method in nursing research. In Qualitative research methods in nursing. Leininger, M. (ed.), pp. 148160. Orlando: Grune & Stratton.

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

  • Karen E. Steinhauser (a1) (a2) (a3) (a4) (a5), Corrine I. Voils (a1) (a2), Hayden Bosworth (a1) (a2) (a3) and James A. Tulsky (a1) (a2) (a3) (a4) (a5) (a6)

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