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Family communication and decision making at the end of life: A literature review

Published online by Cambridge University Press:  28 April 2014

Cara L. Wallace*
Affiliation:
University of Texas at Arlington, Arlington, Texas
*
Address correspondence and reprint requests to: Cara L. Wallace, 4000 Vernon Way, University of Texas at Arlington, Fort Worth, Texas 76244. E-mail: Cara.wallace@mavs.uta.edu

Abstract

Objective:

Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research.

Method:

Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest.

Results:

The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life.

Significance of results:

Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.

Type
Case Report
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Abbey, J.G. (2009). Communication about end-of-life topics between terminally ill cancer patients and their family members. Doctoral dissertation. New York: Fordham University.Google Scholar
Addington-Hall, J.M. (2007). Introduction. In Research methods in palliative care. Addington-Hall, J.M. et al. (eds.), pp. 19. New York: Oxford University Press.Google Scholar
Ahrens, T., Yancey, V. & Kollef, M. (2003). Improving family communications at the end of life: Implications for length of stay in the intensive care unit and resource use. American Journal of Critical Care, 12(4), 317323.Google Scholar
Andruccioli, J., Montesi, A., Raffaeli, W., et al. (2007). Illness awareness of patients in hospice: Psychological evaluation and perception of family members and medical staff. Journal of Palliative Medicine, 10(3), 741748.Google Scholar
Babcock, C.W. & Robinson, L.W. (2011). A novel approach to hospital palliative care: An expanded role for counselors. Journal of Palliative Medicine, 14(4), 491500.Google Scholar
Bachner, Y.G. & Carmel, S. (2009). Open communication between caregivers and terminally ill cancer patients: The role of caregivers' characteristics and situational variables. Health Communication, 24(6), 524531.Google Scholar
Badr, H. & Taylor, C.L.C. (2006). Social constraints and spousal communication in lung cancer. Psycho-Oncology, 15(8), 673683.Google Scholar
Baggs, J.G., Schmitt, M.H., Prendergast, T.J., et al. (2012). Who is attending? End-of-life decision making in the intensive care unit. Journal of Palliative Medicine, 15(1), 5662.Google Scholar
Ballard-Reisch, D.S. & Letner, J.A. (2003). Centering families in cancer communication research: Acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Education and Counseling, 50, 6066.Google Scholar
Bern-Klug, M. (2004). The ambiguous dying syndrome. Health & Social Work, 29(1), 5565.Google Scholar
Blackhall, L.J., Murphy, S.T., Frank, G., et al. (1995). Ethnicity and attitudes toward patient autonomy. The Journal of the American Medical Association, 274, 820825.Google Scholar
Boehmer, U. & Clark, J.A. (2001). Communication about prostate cancer between men and their wives. Journal of Family Practice, 50(3), 226231.Google Scholar
Bomba, P.A., Morrissey, M.B. & Leven, D.C. (2011). Key role of social work in effective communication and conflict resolution process: Medical orders for life-sustaining treatment (MOLST) program in New York and shared medical decision making at the end of life. Journal of Social Work in End-of-Life & Palliative Care, 7(1), 5682.Google Scholar
Bullock, K. (2011). The influence of culture on end-of-life decision making. Journal of Social Work in End-of-Life & Palliative Care, 7(1), 8398.Google Scholar
Byock, I.R. (1996). The nature of suffering and the nature of opportunity at the end of life. Clinics in Geriatric Medicine, 12(2), 237252.Google Scholar
Candib, L.M. (2002). Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Families, Systems & Health, 20(3), 213228.Google Scholar
Casarett, D. (2005). Ethical considerations in end-of-life care and research. Journal of Palliative Medicine, 8(1), S148S160.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
Cohen, M.J., McCannon, J.B., Edgman-Levitan, S., et al. (2010). Exploring attitudes toward advance care directives in two diverse settings. Journal of Palliative Medicine, 13(12), 14271432.Google Scholar
Connor, S.R. (2009). Hospice and palliative care, 2nd ed. New York: Taylor & Francis.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), S187S193.Google Scholar
Dalton, J.A. & Feuerstein, M. (1989). Fear, alexithymia and cancer pain. Pain, 38(2), 159170.Google Scholar
Ditto, P.H., Danks, J.H., Smucker, W.D., et al. (2001). Advance directives as acts of communication: A randomized controlled trial. Archives of Internal Medicine, 161(3), 421430.Google Scholar
Drought, T.S. & Koenig, B.A. (2002). “Choice” in end-of-life decision making: Researching fact or fiction? The Gerontologist, 42, 114128.Google Scholar
Eggerman, S. & Dustin, D. (1985). Death orientation and communication with the terminally ill. Omega: Journal of Death and Dying, 16(3), 255265.Google Scholar
Elliott, B.A., Gessert, C.E. & Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: Narrative and ethics. Scandinavian Journal of Caring Sciences, 23(2), 251258.Google Scholar
Eues, S.K. (2007). End-of-life care: Improving quality of life at the end of life. Professional Case Management, 12(6), 339344.Google Scholar
Fagerlin, A. & Schneider, C.E. (2004). Enough: The failure of the living will. Hastings Center Report, 34(2), 3042.Google Scholar
Fine, P.G. (2003). Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life. Journal of Pain and Symptom Management, 25(4), S53S62.Google Scholar
Fried, T.R., Bradley, E.H., O'Leary, J., et al. (2005). Unmet desire for caregiver–patient communication and increased caregiver burden. Journal of the American Geriatrics Society, 53(1), 5965.Google Scholar
Friedman, B.T., Harwood, M.K. & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5(1), 7384.Google Scholar
Gardner, D.S. & Kramer, B.J. (2009). End-of-life concerns and care preferences: Congruence among terminally ill elders and their family caregivers. Omega: Journal of Death and Dying, 60(3), 273297.Google Scholar
Gauthier, D.M. & Swigart, V.A. (2003). The contextual nature of decision making near the end of life: Hospice patients' perspectives. The American Journal of Hospice & Palliative Care, 20(2), 121128.Google Scholar
Glass, A.P. & Nahapetyan, L. (2008). Discussions by elders and adult children about end-of-life preparation and preferences. Preventing Chronic Disease, 5(1), A08A08.Google Scholar
Gotcher, J.M. (1993). The effects of family communication on psychosocial adjustment of cancer patients. Journal of Applied Communication Research, 21(2), 176188.Google Scholar
Gotcher, J.M. (1995). Well-adjusted and maladjusted cancer patients: An examination of communication variables. Health Communication, 7(1), 2133.Google Scholar
Gysels, M.H., Evans, C. & Higginson, I.J. (2012). Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: A critical interpretive synthesis of the literature. BMC Medical Research Methodology, 12(123), 117.Google Scholar
Hardwig, J. (1990). What about the family? Hastings Center Report, 20(2), 510.Google Scholar
Harris, J., Bowen, D.J., Badr, H., et al. (2009). Family communication during the cancer experience. Journal of Health Communication, 14, 7684.Google Scholar
Head, B. & Ritchie, C. (2004). Researching end-of-life care: Challenges, strategies, and opportunities. Home Healthcare Nurse, 22(1), 3744.Google Scholar
Hickman, S.E. (2002). Improving communication near the end of life. American Behavioral Scientist, 46(2), 252267.Google Scholar
Hidecker, M.J.C., Jones, R.S., Imig, D.R., et al. (2009). Using family paradigms to improve evidence-based practice. American Journal of Speech–Language Pathology, 18(3), 212221.Google Scholar
Hiltunen, E.F., Chase, S.K. & Medich, C. (1999). Decisional conflict in families making end-of-life treatment decisions. In Classification of nursing diagnoses: Proceedings of the thirteenth conference. Rantz, M.J. & LeMone, P. (eds.), pp. 467470. Glendale, CA: CINAHL Information Systems.Google Scholar
Hines, S.C., Babrow, A.S., Badzek, L., et al. (1997). Communication and problematic integration in end-of-life decisions: Dialysis decisions among the elderly. Health Communication, 9(3), 199217.Google Scholar
Hopp, F.P. (2000). Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: Results from a national study. The Gerontologist, 40(4), 449457.Google Scholar
Jennings, B. & Morrissey, M.B. (2011). Health care costs in end-of-life and palliative care: The quest for ethical reform. Journal of Social Work in End-of-Life & Palliative Care, 7(4), 300317.Google Scholar
Johnstone, M. & Kanitsaki, O. (2009). Ethics and advance care planning in a culturally diverse society. Journal of Transcultural Nursing, 20(4), 405416.Google Scholar
Karasz, A., Sacajiu, G., Kogan, M., et al. (2010). The rational choice model in family decision making at the end of life. Journal of Clinical Ethics, 21(3), 189200.Google Scholar
Keeley, M.P. (2007). “Turning toward death together”: The functions of messages during final conversations in close relationships. Journal of Social and Personal Relationships, 24(2), 225253.Google Scholar
Kirkendall, A.M., Waldrop, D. & Moone, R.P. (2012). Caring for people with intellectual disabilities and life-limiting illness: Merging person-centered planning and patient-centered, family-focused care. Journal of Social Work in End-of-Life & Palliative Care, 8(2), 135150.Google Scholar
Kissane, D.W., McKenzie, M., Bloch, S., et al. (2006). Family focused grief therapy: A randomized, controlled trial in palliative care and bereavement. American Journal of Psychiatry, 163(7), 12081218.Google Scholar
Kramer, B.J., Kavanaugh, M., Trentham-Dietz, A., et al. (2010). Predictors of family conflict at the end of life: The experience of spouses and adult children of persons with lung cancer. The Gerontologist, 50(2), 215225.Google Scholar
Kvale, J., Berg, L., Groff, J.Y., et al. (1999). Factors associated with residents' attitudes toward dying patients. Family Medicine, 31(10), 691702.Google Scholar
Lang, F. & Quill, T. (2004). Making decisions with families at the end of life. American Family Physician, 70(4), 719723.Google Scholar
Lichtman, R.R., Taylor, S.E. & Wood, J.V. (1987). Social support and marital adjustment after breast cancer. Journal of Psychosocial Oncology, 5(3), 4774.Google Scholar
Lilly, C.M. & De Meo, D.L. (2000). An intensive communication intervention for the critically ill. American Journal of Medicine, 109(6), 469475.Google Scholar
Lloyd, L., White, K. & Sutton, E. (2011). Researching the end-of-life in old age: Cultural, ethical and methodological issues. Ageing and Society, 31, 386407.Google Scholar
Meeker, M.A. & Jezewski, M.A. (2005). Family decision making at end of life. Palliative & Supportive Care, 3(2), 131142.Google Scholar
Metts, S. & Lamb, E. (2006). Methodological approaches to the study of family communication. In The family communication sourcebook. Turner, L.H. & West, R. (eds.), pp. 83105. Thousand Oaks, CA: Sage Publications.Google Scholar
Neimeyer, RA., Wittkowski, J. & Moser, R.P. (2004). Psychological research on death attitudes: An overview and evaluation. Death Studies, 28(4), 309340.Google Scholar
Olson, D.H. & Barnes, H. (2003). Family communication scale. Minneapolis: Life Innovations.Google Scholar
Parks, S.M., Winter, L., Santana, A.J., et al. (2011). Family factors in end-of-life decision-making: Family conflict and proxy relationship. Journal of Palliative Medicine, 14(2), 179184.Google Scholar
Pecchioni, L.L., Thompson, T.L. & Anderson, D.J. (2006). Interrelations between family communication and health communication. In The family communication sourcebook. Turner, L.H. & West, R. (eds.), pp. 447468. Thousand Oaks, CA: Sage Publications.Google Scholar
Planalp, S. & Trost, M.R. (2008). Communication issues at the end of life: Reports from hospice volunteers. Health Communication, 23(3), 222233.Google Scholar
Quinn, J.R., Schmitt, M., Baggs, J., et al. (2012). Family members' informal roles in end-of-life decision making in adult intensive care units. American Journal of Critical Care, 21(1), 4351.Google Scholar
Rabow, M.W., Hauser, J.M. & Adams, J. (2004). Perspectives on care at the close of life. Supporting family caregivers at the end of life: “They don't know what they don't know.” The Journal of the American Medical Association, 291(4), 483491.Google Scholar
Radwany, S., Albanese, T., Clough, L., et al. (2009). End-of-life decision making and emotional burden: Placing family meetings in context. The American Journal of Hospice & Palliative Medicine, 26(5), 376383.Google Scholar
Reyna, Y.Z., Bennett, M.I. & Bruera, E. (2007). Ethical and practical issues in designing and conducting clinical trials in palliative care. In Research methods in palliative care. Addington-Hall, J.J. et al. (eds.), pp. 2741. New York: Oxford University Press.Google Scholar
Schmid, B., Allen, R.S., Haley, P.P., et al. (2010). Family matters: Dyadic agreement in end-of-life medical decision making. The Gerontologist, 50(2), 226237.Google Scholar
Schroeder, S.A. (1999). The legacy of SUPPORT: Study to understand prognoses and preferences for outcomes and risks of treatments. Annals of Internal Medicine, 131(10), 780782.Google Scholar
Scott, A.M. (2010). Family conversations about end-of-life health decisions. Doctoral dissertation. University of Illinois at Urbana-Champaign.Google Scholar
Segrin, C. & Flora, J. (2005). Family communication. Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Shrank, W.H., Kutner, J.S., Richardson, R., et al. (2005). Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine, 20, 703709.Google Scholar
Smith, A.K., Sudore, R.L. & Perez-Stable, E.J. (2009). Palliative care for Latino patients and their families: Whenever we prayed, she wept. The Journal of the American Medical Association, 301(10), 10471057.Google Scholar
Stein, G.L., Sherman, P.A. & Bullock, K. (2009). Educating gerontologists for cultural proficiency in end-of-life care practice. Educational Gerontology, 35, 10081025.Google Scholar
Stone, A.M., Mikucki-Enyart, S., Middleton, A., et al. (2012). Caring for a parent with lung cancer: Caregivers' perspectives on the role of communication. Qualitative Health Research, 22(7), 957970.Google Scholar
SUPPORT Principal Investigators (1995). A controlled trial to improve care for seriously ill hospitalized patients. The Journal of the American Medical Association, 274(20), 15911598.Google Scholar
Swigart, V., Lidz, C., Butterworth, V., et al. (1996). Ethical issues. letting go: Family willingness to forgo life support. Heart & Lung, 25(6), 483494.Google Scholar
Thornton, J.D. (2008). African Americans get less EoL discussion. Medical Ethics Advisor, 24(7), 8283.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
Volker, D.L. (2005). Control and end-of-life care: Does ethnicity matter? The American Journal of Hospice & Palliative Medicine, 22(6), 442446.Google Scholar
Waldrop, D.P. & Meeker, M.A. (2012). Hospice decision making: Diagnosis makes a difference. The Gerontologist, 52(5), 686697.Google Scholar
Waldrop, D.P. & Rinfrette, E.S. (2009). Making the transition to hospice: Exploring hospice professionals' perspectives. Death Studies, 33, 557580.Google Scholar
Wittenberg-Lyles, E., Goldsmith, J., Demiris, G., et al. (2012). The impact of family communication patterns on hospice family caregivers: A new typology. Journal of Hospice and Palliative Nursing, 14(1), 2533.Google Scholar
Young, A.J. & Rodriguez, K.L. (2006). The role of narrative in discussing end-of-life care: Eliciting values and goals from text, context, and subtext. Health Communication, 19(1), 4959.Google Scholar
Zhang, A.Y. & Siminoff, L.A. (2003). The role of the family in treatment decision making by patients with cancer. Oncology Nursing Forum, 30(6), 10221028.Google Scholar