The family surrogates’ psychological experience of making a do-not-resuscitate decision for older relatives: a qualitative study

Abstract

Surrogates who must decide whether to make a DNR decision for older relatives experience great emotional conflict. Understanding surrogates' struggles may assist nursing and care staff in managing this difficult situation.

Systematic Review Revisited, 2010–2020: The Effect on Surrogates of Making Treatment Decisions for Others

“…Similar to the prior findings of Wendler and Rid, 4 improving communication was cited by SDMs among multiple studies from various care environments as a means to decrease their emotional burden. 5,[8][9][10][11][12]16 SDMs within this study recommended regular and honest communication from the provider about prognosis and treatment options. 10 Bradley and Green 7 asserted that provider-SDM exchange serves a dual purpose, inform decisions and support SDMs as carers.…”

“…Nine of the 10 articles reported that surrogates experienced the effects of stress, anxiety, conflict, or other emotional burden related to decision making for an incapacitated adult. 7–12 Of the seven qualitative articles, six gave examples of specific stressors or distress associated with decision making (ie, family conflict, congruent decision making, lack of medical insight). 7–12 All three of the quantitative studies reported role stress associated with SDM., 5,13,14…”

“…Nine of the 10 articles reported that surrogates experienced the effects of stress, anxiety, conflict, or other emotional burden related to decision making for an incapacitated adult. [7][8][9][10][11][12] Of the seven qualitative articles, six gave examples of specific stressors or distress associated with decision making (ie, family conflict, congruent decision making, lack of medical insight). [7][8][9][10][11][12] All three of the quantitative studies reported role stress associated with SDM., 5,13,14 Similar to Wendler and Rid, 4 reports of surrogate emotional burden were consistent across study locations and methodologies, interval between treatment decisions and data collection, relationship to patient and types of treatment decisions.…”

“…[7][8][9][10][11][12] Of the seven qualitative articles, six gave examples of specific stressors or distress associated with decision making (ie, family conflict, congruent decision making, lack of medical insight). [7][8][9][10][11][12] All three of the quantitative studies reported role stress associated with SDM., 5,13,14 Similar to Wendler and Rid, 4 reports of surrogate emotional burden were consistent across study locations and methodologies, interval between treatment decisions and data collection, relationship to patient and types of treatment decisions. Buckey and Molina 8 described one surrogate's account of their SDM's experience as having painful and intense emotions, leaving them feeling "emotionally destroyed" (p. 267).…”

“…Several studies cited increased or improved communication as a means to mitigate the negative effects on SDMs. 5,[7][8][9][10]12,16 Many SDMs are reluctant to assert their power as decision maker, struggling with "who am I to decide". 9 de Boer 9 asserted that with better provider-SDM communication, the SDM's confidence in their abilities would increase, helping to alleviate their distress related to decision making.…”