Abstract:The aims of this study were to examine the extent of decisional conflict in end-of-life cancer treatments and to investigate the influences and predictors of decisional conflict among family surrogates. A cross-sectional, descriptive, correlational design was applied. Data were collected from a convenience sample of 102 family members who had participated in end-of-life cancer decision-making. We enrolled participants from inpatient oncology units at a university hospital in South Korea from May 2014 to Januar… Show more
“…This high prevalence contrasts with the literature consensus that a minority of individuals experience heightened decisional regret when they make decisions (primarily not EOL‐care decisions) for themselves 9 or others 11,16,34 . Our participants' decisional regret may be more comparable to that of Korean surrogates who decided about forgoing life‐sustaining treatments for their relative (mean = 45.4) 10 . We also observed that surrogates' likelihood of heightened decisional regret increased as their relative's death approached (Table 3).…”
Section: Discussioncontrasting
confidence: 84%
“…Our participants' decisional conflict level is substantially higher than those of US surrogates making EOL‐care decisions (mean DCS scores ranged 21.5–25.5 30,34,35 ) but is comparable with those reported among international patients and surrogates making palliative‐care decisions (mean = 45.0) 5 . However, our participants' mean was markedly lower than that for Korean surrogates who decided to forgo their relative's life‐sustaining treatments (mean = 56.3, n = 102), 10 a rare decision in our study (4.1%, Supporting Information S1: Table 1). Deciding to withdraw/withhold life‐sustaining treatments is extremely difficult for Asian families due to the strong cultural, Confucian influence of filial duty 4 to use every means to keep a relative alive.…”
Section: Discussionsupporting
confidence: 69%
“…Decisional conflict may predispose patients to subsequent decisional regret, 9 but this relationship has seldom been examined for surrogates 5 . Moreover, limited evidence shows that both before and after loss heightened decisional regret is a risk factor for surrogates' psychological distress, that is, higher psychological stress, 10 anxiety symptoms, 11 and prolonged‐grief‐disorder 12 symptoms.…”
Section: Introductionmentioning
confidence: 99%
“…6,8 Decisional conflict may predispose patients to subsequent decisional regret, 9 but this relationship has seldom been examined for surrogates. 5 Moreover, limited evidence shows that both before and after loss heightened decisional regret is a risk factor for surrogates' psychological distress, that is, higher psychological stress, 10 anxiety symptoms, 11 and prolonged-grief-disorder 12 symptoms. EOL-care decision making is fraught with cognitive and emotional challenges for surrogates, who frequently do not accurately know and overestimate the patient's prognosis 13 and treatment preferences.…”
Objective
Preparing family surrogates for patient death and end‐of‐life (EOL) decision making may reduce surrogate decisional conflict and regret. Preparedness for patient death involves cognitive and emotional preparedness. We assessed the associations of surrogates' death‐preparedness states (that integrate both cognitive and emotional preparedness for patient death) with surrogates' decisional conflict and regret.
Methods
Associations of 173 surrogates' death‐preparedness states (no, cognitive‐only, emotional‐only, and sufficient preparedness states) with decisional conflict (measured by the Decision Conflict Scale) and heightened decisional regret (Decision Regret Scale scores >25) were evaluated using hierarchical linear modeling and hierarchical generalized linear modeling, respectively, during a longitudinal observational study at a medical center over cancer patients' last 6 months.
Results
Surrogates reported high decisional conflict (mean [standard deviation] = 41.48 [6.05]), and 52.7% of assessments exceeded the threshold for heightened decisional regret. Surrogates in the cognitive‐only preparedness state reported a significantly higher level of decisional conflict (β = 3.010 [95% CI = 1.124, 4.896]) than those in the sufficient preparedness state. Surrogates in the no (adjusted odds ratio [AOR] [95% CI] = 0.293 [0.113, 0.733]) and emotional‐only (AOR [95% CI] = 0.359 [0.149, 0.866]) preparedness states were less likely to suffer heightened decisional regret than those in the sufficient preparedness state.
Conclusions
Surrogates' decisional conflict and heightened decisional regret are associated with their death‐preparedness states. Improving emotional preparedness for the patient's death among surrogates in the cognitive‐only preparedness state and meeting the specific needs of those in the no, emotional‐only, and sufficient preparedness states are actionable high‐quality EOL‐care interventions that may lessen decisional conflict and decisional regret.
“…This high prevalence contrasts with the literature consensus that a minority of individuals experience heightened decisional regret when they make decisions (primarily not EOL‐care decisions) for themselves 9 or others 11,16,34 . Our participants' decisional regret may be more comparable to that of Korean surrogates who decided about forgoing life‐sustaining treatments for their relative (mean = 45.4) 10 . We also observed that surrogates' likelihood of heightened decisional regret increased as their relative's death approached (Table 3).…”
Section: Discussioncontrasting
confidence: 84%
“…Our participants' decisional conflict level is substantially higher than those of US surrogates making EOL‐care decisions (mean DCS scores ranged 21.5–25.5 30,34,35 ) but is comparable with those reported among international patients and surrogates making palliative‐care decisions (mean = 45.0) 5 . However, our participants' mean was markedly lower than that for Korean surrogates who decided to forgo their relative's life‐sustaining treatments (mean = 56.3, n = 102), 10 a rare decision in our study (4.1%, Supporting Information S1: Table 1). Deciding to withdraw/withhold life‐sustaining treatments is extremely difficult for Asian families due to the strong cultural, Confucian influence of filial duty 4 to use every means to keep a relative alive.…”
Section: Discussionsupporting
confidence: 69%
“…Decisional conflict may predispose patients to subsequent decisional regret, 9 but this relationship has seldom been examined for surrogates 5 . Moreover, limited evidence shows that both before and after loss heightened decisional regret is a risk factor for surrogates' psychological distress, that is, higher psychological stress, 10 anxiety symptoms, 11 and prolonged‐grief‐disorder 12 symptoms.…”
Section: Introductionmentioning
confidence: 99%
“…6,8 Decisional conflict may predispose patients to subsequent decisional regret, 9 but this relationship has seldom been examined for surrogates. 5 Moreover, limited evidence shows that both before and after loss heightened decisional regret is a risk factor for surrogates' psychological distress, that is, higher psychological stress, 10 anxiety symptoms, 11 and prolonged-grief-disorder 12 symptoms. EOL-care decision making is fraught with cognitive and emotional challenges for surrogates, who frequently do not accurately know and overestimate the patient's prognosis 13 and treatment preferences.…”
Objective
Preparing family surrogates for patient death and end‐of‐life (EOL) decision making may reduce surrogate decisional conflict and regret. Preparedness for patient death involves cognitive and emotional preparedness. We assessed the associations of surrogates' death‐preparedness states (that integrate both cognitive and emotional preparedness for patient death) with surrogates' decisional conflict and regret.
Methods
Associations of 173 surrogates' death‐preparedness states (no, cognitive‐only, emotional‐only, and sufficient preparedness states) with decisional conflict (measured by the Decision Conflict Scale) and heightened decisional regret (Decision Regret Scale scores >25) were evaluated using hierarchical linear modeling and hierarchical generalized linear modeling, respectively, during a longitudinal observational study at a medical center over cancer patients' last 6 months.
Results
Surrogates reported high decisional conflict (mean [standard deviation] = 41.48 [6.05]), and 52.7% of assessments exceeded the threshold for heightened decisional regret. Surrogates in the cognitive‐only preparedness state reported a significantly higher level of decisional conflict (β = 3.010 [95% CI = 1.124, 4.896]) than those in the sufficient preparedness state. Surrogates in the no (adjusted odds ratio [AOR] [95% CI] = 0.293 [0.113, 0.733]) and emotional‐only (AOR [95% CI] = 0.359 [0.149, 0.866]) preparedness states were less likely to suffer heightened decisional regret than those in the sufficient preparedness state.
Conclusions
Surrogates' decisional conflict and heightened decisional regret are associated with their death‐preparedness states. Improving emotional preparedness for the patient's death among surrogates in the cognitive‐only preparedness state and meeting the specific needs of those in the no, emotional‐only, and sufficient preparedness states are actionable high‐quality EOL‐care interventions that may lessen decisional conflict and decisional regret.
“…Although the physician-patients were more informed than most lay patients about their illness, prognosis and treatment options and their family caregivers were also well educated, family caregivers reported concerns that have been reported among lay family caregivers. For example, family caregivers talked about their desire to reach consensus with other family members on treatment and care decisions for the physician patient but recognized that some level of conflict among the family members might occur [33]. Similar to other studies of caregivers of persons with serious illness, faith beliefs and religious practices provided great comfort to some of the family members of the physician-patients especially near death, but divergent beliefs created conflict [34].…”
Background The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. Objectives The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. Design Cross-sectional qualitative design. Participants We conducted interviews with family members of deceased physicians. Approach We analyzed the data using the constant comparison method to identify themes. Key results Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system.
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