Original Article| Volume 60, ISSUE 6, P1117-1126, December 2020

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Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial



      Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP.


      To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress.


      Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm).


      ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment.


      Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons.

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        • Vig E.K.
        • Starks H.
        • Taylor J.S.
        • Hopley E.K.
        • Fryer-Edwards K.
        Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.
        J Gen Intern Med. 2007; 22: 1274-1279
        • Silveira M.J.
        • Kim S.Y.H.
        • Langa K.M.
        Advance directives and outcomes of surrogate decision making before death.
        N Engl J Med. 2010; 362: 1211-1218
        • Christakis N.A.
        • Iwashyna T.J.
        The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses.
        Soc Sci Med. 2003; 57: 465-475
        • Mitnick S.
        • Leffler C.
        • Hood V.L.
        Family caregivers, patients and physicians: ethical guidance to optimize relationships.
        J Gen Intern Med. 2010; 25: 255-260
        • Wittenberg-Lyles E.
        • Demiris G.
        • Parker Oliver D.
        • et al.
        Stress variances among informal hospice caregivers.
        Qual Health Res. 2012; 22: 1114-1125
        • Detering K.M.
        • Hancock A.D.
        • Reade M.C.
        • Silvester W.
        The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.
        BMJ. 2010; 340: c1345
        • Majesko A.
        • Hong S.Y.
        • Weissfeld L.
        • White D.B.
        Identifying family members who may struggle in the role of surrogate decision maker.
        Crit Care Med. 2012; 40: 2281-2286
        • Iverson E.
        • Celious A.
        • Kennedy C.R.
        • et al.
        Factors affecting stress experienced by surrogate decision makers for critically ill patients: implications for nursing practice.
        Intensive Crit Care Nurs. 2014; 30: 77-85
        • Sullivan D.R.
        • Liu X.
        • Corwin D.S.
        • et al.
        Learned helplessness among families and surrogate decision-makers of patients admitted to medical, surgical, and trauma ICUs.
        Chest. 2012; 142: 1440-1446
        • Kramer B.J.
        • Boelk A.Z.
        • Auer C.
        Family conflict at the end of life: lessons learned in a model program for vulnerable older adults.
        J Palliat Med. 2006; 9: 791-801
        • Webb J.
        • Guarino A.J.
        Life after the death of a loved one: long-term distress among surrogate decision makers.
        J Hosp Palliat Nurs. 2011; 13: 378-386
        • Azoulay E.
        • Pochard F.
        • Kentish-Barnes N.
        • et al.
        Risk of post-traumatic stress symptoms in family members of intensive care unit patients.
        Am J Respir Crit Care Med. 2005; 171: 987-994
        • Ahrens T.
        • Yancey V.
        • Kollef M.
        Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use.
        Am J Crit Care. 2003; 12: 317-323
        • Bischoff K.E.
        • Sudore R.
        • Miao Y.
        • Boscardin W.J.
        • Smith A.K.
        Advance care planning and the quality of end-of-life care in older adults.
        J Am Geriatr Soc. 2013; 61: 209-214
        • Green M.J.
        • Schubart J.R.
        • Whitehead M.M.
        • et al.
        Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer.
        J Pain Symptom Manage. 2015; 49: 1088-1096
        • Teno J.M.
        • Gruneir A.
        • Schwartz Z.
        • Nanda A.
        • Wetle T.
        Association between advance directives and quality of end-of-life care: a national study.
        J Am Geriatr Soc. 2007; 55: 189-194
        • Jacob D.A.
        Family members' experiences with decision making for incompetent patients in the ICU: a qualitative study.
        Am J Crit Care. 1998; 7: 30-36
        • Abbott K.H.
        • Sago J.G.
        • Breen C.M.
        • Abernethy A.P.
        • Tulsky J.A.
        Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support.
        Crit Care Med. 2001; 29: 197-201
        • Ditto P.H.
        • Danks J.H.
        • Smucker W.D.
        • et al.
        Advance directives as acts of communication.
        Arch Intern Med. 2001; 161: 421-430
        • Keeley M.P.
        “Turning toward death together”: the functions of messages during final conversations in close relationships.
        J Soc Pers Relat. 2007; 24: 225-253
        • Meeker M.A.
        • Jezewski M.A.
        Family decision making at end of life.
        Palliat Support Care. 2005; 3: 131-142
        • Azoulay E.
        The end-of-life family conference: communication empowers.
        Am J Respir Crit Care Med. 2005; 171: 803-804
        • Apatira L.
        • Boyd E.A.
        • Malvar G.
        • et al.
        Hope, truth, and preparing for death: perspectives of surrogate decision makers.
        Ann Intern Med. 2008; 149: 861-868
        • Wendler D.
        • Rid A.
        Systematic review: the effect on surrogates of making treatment decisions for others.
        Ann Intern Med. 2011; 154: 336-346
        • Larson D.G.
        • Tobin D.R.
        End-of-life conversations.
        JAMA. 2000; 284: 1573-1578
        • Institute of Medicine of the National Academies
        Dying in America improving quality and honoring individual preferences near the end of life: the pressing need to improve end-of-life care.
        Inst Med. 2014; 180: 365-367
        • Badr H.
        • Carmack Taylor C.L.
        Social constraints and spousal communication in lung cancer.
        Psychooncology. 2006; 15: 673-683
        • Collins A.
        • McLachlan S.A.
        • Philip J.
        How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer.
        Palliat Med. 2018; 32: 861-869
        • Curtis J.R.
        • Patrick D.L.
        • Caldwell E.S.
        • et al.
        Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians.
        Arch Intern Med. 2000; 160: 1690-1696
        • Emanuel E.J.
        • Fairclough D.L.
        • Wolfe P.
        • et al.
        Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?.
        Arch Intern Med. 2004; 164: 1999-2004
        • Smith T.J.
        • Dow L.A.
        • Virago E.A.
        • et al.
        A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer.
        J Support Oncol. 2011; 9: 79-86
        • Song M.K.
        • Kirchhoff K.T.
        • Douglas J.
        • Ward S.
        • Hammes B.
        A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.
        Med Care. 2005; 43: 1049-1053
        • Green M.J.
        • Van Scoy L.J.
        • Foy A.J.
        • et al.
        A randomized controlled trial of strategies to improve family members' preparedness for surrogate decision-making.
        Am J Hosp Palliat Care. 2018; 35: 866-874
        • Palinkas L.A.
        • Horwitz S.M.
        • Green C.A.
        • et al.
        Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.
        Adm Policy Ment Health. 2015; 42: 533-544
        • Glaser B.G.
        The constant comparative method of qualitative analysis.
        Soc Probl. 1965; 12: 436-445
        • Bazeley P.
        Integrating analyses for mixed methods research.
        SAGE, Thousand Oaks, CA2017