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Family decision making at end of life

Published online by Cambridge University Press:  07 December 2005

MARY ANN MEEKER
Affiliation:
School of Nursing, University at Buffalo, the State University of New York, NY
MARY ANN JEZEWSKI
Affiliation:
School of Nursing, University at Buffalo, the State University of New York, NY

Abstract

Objective: To enhance understanding of the phenomenon of family surrogate decision-making at the end of life (EOL) by means of a systematic review and synthesis of published research reports that address this phenomenon.

Methods: Garrard's (1999) methods for conducting a systematic review of the literature were followed. Fifty-one studies focusing on family decision-making experiences, needs, and processes when assisting a dying family member were selected following electronic database searches and ancestry searches.

Results: In studies using hypothetical scenarios to compare patients' choices and surrogates' predictions of those choices, surrogates demonstrated low to moderate predictive accuracy. Increased accuracy occurred in more extreme scenarios, under conditions of forced choice, and when the surrogate was specifically directed to use substituted judgment. In qualitative explorations of their perspectives, family members voiced their desire to be involved and to accept the moral responsibility attendant to being a surrogate. Quality of communication available with providers significantly influenced family satisfaction with decision-making and EOL care. Group or consensual decision-making involving multiple family members was preferred over individual surrogate decision-making. Surrogates experienced long-term physical and psychological outcomes from being decision-makers.

Significance of results: Functioning as a surrogate decision-maker typically places great moral, emotional, and cognitive demands on the family surrogate. Clinicians can provide improved care to both patients and families with better understanding of surrogates' needs and experiences.

Type
Review Article
Copyright
© 2005 Cambridge University Press

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References

REFERENCES

Abbott, K., Sago, J., Breen, C., et al. (2001). Families looking back: One year after discussion of withdrawal or withholding of life-sustaining support. Critical Care Medicine, 29(1), 197201.Google Scholar
Aikman, P.J., Thiel, E.C., Martin, D.K., et al. (1999). Proxy, health, and personal care preferences: Implication for end-of-life care. Cambridge Quarterly of Healthcare Ethics, 8, 200210.Google Scholar
Carline, J.D., Curtis, J.R., Wenrich, M.D., et al. (2003). Physicians' interactions with health care teams and systems in the care of dying patients: Perspectives of dying patients, family members, and health care professionals. Journal of Pain and Symptom Management, 25(1), 1928.Google Scholar
Chen, H., Haley, W.E., Robinson, B.E., et al. (2003). Decisions for hospice care in patients with advanced cancer. Journal of the American Geriatrics Society, 51(6), 789797.Google Scholar
Covinsky, K.E., Fuller, J.D., Yaffe, K., et al. (2000). Communication and decision-making in seriously ill patients: Findings of the SUPPORT project. Journal of the American Geriatrics Society, 48(5 Supplement), S187S193.Google Scholar
Curtis, J.R., Wenrich, M.D., Carline, J.D., et al. (2001). Understanding physicians' skills at providing end-of-life care: Perspectives of patients, families, and health care workers. Journal of General Internal Medicine, 16(1), 4149.Google Scholar
Ditto, P.H., Danks, J.H., Smucker, W.D., et al. (2001). Advance directives as acts of communication. Archives of Internal Medicine, 161, 421430.Google Scholar
Dupree, C.Y. (2000). The attitudes of black Americans toward advance directives. Journal of Transcultural Nursing, 11(1), 1218.Google Scholar
Fagerlin, A., Ditto, P.H., Danks, J.H., et al. (2001). Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology, 20(3), 166175.Google Scholar
Forbes, S., Bern-Klug, M., & Gessert, C. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32(3), 251258.Google Scholar
Fried, T.R., Bradley, E.H., & Towle, V.R. (2003). Valuing the outcomes of treatment: Do patients and their caregivers disagree. Archives of Internal Medicine, 163(17), 20732078.Google Scholar
Garrard, J. (1999). Health sciences literature review made easy: The matrix method. Gaitersburg, Md.: Aspen Publishers.
Hamel, C.F., Guse, L.W., Hawranik, & P.G., et al., (2002). Advance directives and community-dwelling older adults. Western Journal of Nursing Research, 24(2), 143158.Google Scholar
Hanson, L.C., Danis, M., & Garrett, J. (1997). What is wrong with end-of-life care? Opinions of bereaved family members. Journal of the American Geriatrics Society, 45(11), 13391344.Google Scholar
Hare, J., Pratt, C., & Nelson, C. (1992). Agreement between patients and their self-selected surrogates on difficult medical decisions. Archives of Internal Medicine, 152, 10491054.Google Scholar
Hastings Center. (1987). Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington: Indiana University Press.
High, D.M. (1994). Surrogate decision-making: Who will make decisions for me when I can't? Clinics in Geriatric Medicine, 10, 445461.Google Scholar
Hines, S.C., Glover, J.J., Holley, J.L., et al. (1999). Dialysis patients' preferences for family-based advance care planning. Annals of Internal Medicine, 130, 825828.Google Scholar
Jacob, D.A. (1998). Family members' experiences with decision making for incompetent patients in the ICU: A qualitative study. American Journal of Critical Care, 7(1), 3036.Google Scholar
Jacobson, J.A., Francis, L.P., Battin, M.P., et al. (1997). Dialogue to action: Lessons learned from some family members of deceased patients at an interactive program in seven Utah hospitals. Journal of Clinical Ethics, 8, 359371.Google Scholar
Jeffers, B.R. (1995). Treatment decision-making for an incapacitated family member: The surrogate's lived experience. Unpublished Doctoral Dissertation, Saint Louis University, Saint Louis.
Kirchoff, K.T. & Beckstrand, R.L. (2000). Critical care nurses' perceptions of obstacles and helpful behaviors in providing end-of-life care to dying patients. American Journal of Critical Care, 9(2), 96105.Google Scholar
Koch, T. (1997). Principles and purpose: The patient surrogate's perspective and role. Cambridge Quarterly of Healthcare Ethics, 6, 461469.Google Scholar
Layde, P.M., Craig, A.B., Broste, S.K., et al. (1995). Surrogates' prediction of seriously ill patients' resuscitation preferences. Achives of Family Medicine, 4, 518524.Google Scholar
Levine, C. & Zuckerman, C. (1999). The trouble with families: Toward an ethic of accommodation. Annals of Internal Medicine, 130, 148152.Google Scholar
Libbus, M.K. & Russell, C. (1995). Congruence of decisions between patients and their potential surrogates about life-sustaining therapies. Image—The Journal of Nursing Scholarship, 27, 135140.Google Scholar
Lynn, J. & Teno, J. (1998). A care provider perspective on advance directives and surrogate decision making for incompetent adults in the United States. In H.M. Sass, R.M. Veatch, & R. Kimura (eds.), Advance directives and surrogate decision making in health care: United States, Germany, and Japan. Baltimore, MD: The Johns Hopkins University Press.
Meeker, M.A. (2004). Family surrogate decision-making at the end of life: Seeing them through with care and respect. Qualitative Health Research, 14(2), 204225.Google Scholar
Meeker, M.A. & Jezewski, M.A. (2004). A voice for the dying. Clinical Nursing Research, 13(4), 326342.Google Scholar
Miles, S.H., Koepp, R., & Weber, E.P. (1996). Advance end-of-life treatment planning: A research review. Archives of Internal Medicine, 156, 10621068.Google Scholar
Moore, C.D., Sparr, J., Sherman, S., et al. (2003). Surrogate decision-making: Judgment standard preferences of older adults. Social Work in Health Care, 37(2), 116.Google Scholar
Nelson, J.L. & Nelson, H.L. (1995). The Patient in the Family: An Ethics of Medicine and Families. New York: Routledge.
Norton, S.A. & Bowers, B.J. (2001). Working toward consensus: providers' strategies to shift patients from curative to palliative treatment choices. Research in Nursing & Health, 24(4), 258269.Google Scholar
Norton, S.A., Tilden, V.P., Tolle, S.W., et al. (2003). Life support withdrawal: Communication and conflict. American Journal of Critical Care, 12(6), 548555.Google Scholar
Ouslander, J.G., Tymchuk, A.J., & Rahbar, R. (1989). Health care decisions among elderly long-term care residents and their potential proxies. Archives of Internal Medicine, 149, 13671372.Google Scholar
Pierce, S.F. (1999). Improving end-of-life care: Gathering suggestions from family members. Nursing Forum, 34(2), 514.Google Scholar
President's Commission. (1983). Deciding to forego life-sustaining treatment. Washington, D.C.: Government Printing Office.
Rabow, M.W., Hauser, J.M., & Adams, J. (2004). Supporting family caregivers at the end of life: “They don't know what they don't know”. JAMA, 291(4), 483491.Google Scholar
Robertson, D.W. (1996). Ethical theory, ethnography, and differences between doctors and nurses in approaches to patient care. Journal of Medical Ethics, 22, 292299.Google Scholar
Robinson, E. (2001). Caring for incompetent patients and their surrogates: A case study of end-of-life care. American Journal of Nursing, 101(7), 7576.Google Scholar
Rosenfeld, K.E., Wenger, N.S., & Kagawa-Singer, M. (2000). End-of-life decision making: A qualitative study of elderly individuals. Journal of General Internal Medicine, 15(9), 620625.Google Scholar
Seckler, A.B., Meier, D.E., Mulvihill, M., et al. (1991). Substituted judgement: How accurate are proxy predictions? American College of Physicians, 115(2), 9298.Google Scholar
Shidler, S. (1998). A systemic perspective of life-prolonging treatment decision making. Qualitative Health Research, 8, 254269.Google Scholar
Singer, P.A., Martin, D.K., & Kelner, M. (1999). Quality end-of-life care: Patients' perspectives. Journal of the American Medical Association, 281, 163168.Google Scholar
Singer, P.A., Martin, D.K., Lavery, J.V., et al. (1998). Reconceptualizing advance care planning from the patient's perspective. Archives of Internal Medicine, 158(8), 879884.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, 825832.Google Scholar
Suhl, J., Simons, P., Reedy, T., et al. (1994). Myth of substituted judgment: Surrogate decision making regarding life support is unreliable. Archives of Internal Medicine, 154, 9096.Google Scholar
Sulmasy, D.P., Haller, K., & Terry, P.B. (1994). More talk, less paper: Predicting the accuracy of substituted judgments. American Journal of Medicine, 96(5), 432438.Google Scholar
Sulmasy, D.P., Terry, P.B., Weisman, C.S., et al. (1998). The accuracy of substituted judgments in patients with terminal diagnoses. Annals of Internal Medicine, 128(8), 621629.Google Scholar
SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients. Journal of the American Medical Association, 274, 15911597.Google Scholar
Swigart, V., Lidz, C., Butterworth, V., et al. (1996). Letting go: Family willingness to forgo life support. t & Lung, 25(6), 483494.Google Scholar
Teno, J.M., Stevens, M., Spernak, S., et al. (1998). Role of written advance directives in decision making: Insights from qualitative and quantitative data. Journal of General Internal Medicine, 13(7), 439446.Google Scholar
Terry, P.B., Vettese, M., Song, J., et al. (1999). End-of-life decision making: When patients and surrogates disagree. Journal of Clinical Ethics, 10(4), 286293.Google Scholar
Tilden, V., Tolle, S., Nelson, C.A., et al. (2001). Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research, 50 105115.Google Scholar
Tilden, V.P., Tolle, S., Garland, M., et al. (1995). Decisions about life sustaining treatment: Impact of physicians' behaviors on the family. Archives of Internal Medicine, 155(6), 633638.Google Scholar
Tomlinson, T., Howe, K., Notman, M., et al. (1990). An empirical study of proxy consent for elderly persons. The Gerontologist, 30(1), 5464.Google Scholar
Tschann, J.M., Kaufman, S.R., & Micco, G.P. (2003). Family involvement in end-of-life hospital care. Journal of the American Geriatrics Society, 51(6), 835840.Google Scholar
Uhlmann, R.F., Pearlman, R.A., & Cain, K.C. (1988). Physicians' and spouses' predictions of elderly patients' resuscitation preferences. Journal of Gerontology, 43(5), 115121.Google Scholar
Wenrich, M.D., Curtis, J.R., Ambrozy, D.A., et al. (2003). Dying patients' need for emotional support and personalized care from physicians: Perspectives of patients with terminal illness, families, and health care providers. Journal of Pain and Symptom Management, 25(3), 236246.Google Scholar
Wenrich, M.D., Curtis, J.R., Shannon, S.E., et al. (2001). Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Archives of Internal Medicine, 161(6), 868874.Google Scholar
Yurk, R., Morgan, D., Franey, M.A., et al. (2002). Understanding the continuum of palliative care for patients and their caregivers. Journal of Pain and Symptom Management, 24(5), 459470.Google Scholar
Zweibel, N.R. & Cassel, C.K. (1989). Treatment choices at the end of life: A comparison of decisions by older patients and their physician-selected proxies. Gerontologist, 29, 615621.Google Scholar