What would people think? Perceived social norms, willingness to serve as a surrogate, and end-of-life treatment decisions

2020 ◽  
pp. 1-9
Author(s):  
Rachael Spalding ◽  
JoNell Strough ◽  
Barry Edelstein

Abstract Background Population aging has increased the prevalence of surrogate decision making in healthcare settings. However, little is known about factors contributing to the decision to become a surrogate and the surrogate medical decision-making process in general. We investigated how intrapersonal and social-contextual factors predicted two components of the surrogate decision-making process: individuals’ willingness to serve as a surrogate and their tendency to select various end-of-life treatments, including mechanical ventilation and palliative care options. Method An online sample (N = 172) of adults made hypothetical surrogate decisions about end-of-life treatments on behalf of an imagined person of their choice, such as a parent or spouse. Using self-report measures, we investigated key correlates of willingness to serve as surrogate (e.g., decision-making confidence, willingness to collaborate with healthcare providers) and choice of end-of-life treatments. Results Viewing service as a surrogate as a more typical practice in healthcare was associated with greater willingness to serve. Greater decision-making confidence, greater willingness to collaborate with patients’ physicians, and viewing intensive, life-sustaining end-of-life treatments (e.g., mechanical ventilation) as more widely accepted were associated with choosing more intensive end-of-life treatments. Significance of results The current study's consideration of both intrapersonal and social-contextual factors advances knowledge of two key aspects of surrogate decision making — the initial decision to serve as surrogate, and the surrogate's selection of various end-of-life treatment interventions. Providers can use information about the role of these factors to engage with surrogates in a manner that better facilitates their decision making. For instance, providers can be sensitive to potential cultural differences in surrogate decision-making tendencies or employing decision aids that bolster surrogates’ confidence in their decisions.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 421-421
Author(s):  
Rachael Spalding ◽  
JoNell Strough ◽  
Barry Edelstein

Abstract Population aging has increased the prevalence of surrogate decision making in healthcare settings. However, little is known about factors contributing to the decision to become a surrogate and the surrogate medical decision-making process in general. We investigated how intrapersonal and social-contextual factors predicted two components of the surrogate decision-making process: individuals’ willingness to serve as a surrogate and their tendency to select various end-of-life treatments, including mechanical ventilation and palliative care options. An online sample (N=172) of adults made hypothetical surrogate decisions about end-of-life treatments on behalf of an imagined individual of their choice, such as a parent or spouse. Using self-report measures, we investigated key correlates of willingness to serve as surrogate (e.g., decision-making confidence, willingness to collaborate with healthcare providers), and choice of end-of-life treatments. Viewing service as a surrogate as a more typical practice in healthcare was associated with greater willingness to serve. Greater decision-making confidence, greater willingness to collaborate with patients’ physicians, and viewing intensive, life-sustaining end-of-life treatments (e.g., mechanical ventilation) as more widely accepted were associated with choosing more intensive end-of-life treatments. The current study’s consideration of both intrapersonal and social-contextual factors advances knowledge of two key aspects of surrogate decision making—the initial decision to serve as surrogate, and the surrogate’s selection of various end-of-life treatment interventions. Providers can use information about the role of these factors to engage with surrogates in a manner that better facilitates their decision making.


2020 ◽  
Vol 15 (3) ◽  
pp. 111-119
Author(s):  
L Syd M Johnson ◽  
Kathy L Cerminara

The minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent communication. As medical expertise develops and technology advances, it is likely that more and more patients with disorders of consciousness will be recognized as being in the minimally conscious state, with minimal to no ability to participate in medical decision-making. Here we provide guidance useful for surrogates and medical professionals at any medical decision point, not merely for end-of-life decision-making. We first consider the legal landscape: precedent abounds regarding unconscious patients in coma or the vegetative state/Unresponsive Wakefulness Syndrome (VS/UWS), but there is little legal precedent involving patients in the minimally conscious state. Next we consider surrogates’ ethical authority to make medical decisions on behalf of patients with disorders of consciousness. In everyday medical decision-making, surrogates generally encounter few, if any, restrictions so long as they adhere to an idealized hierarchy of decision-making standards designed to honor patient autonomy as much as possible while ceding to the reality of what may or may not be known about a patient’s wishes. We conclude by proposing an ethically informed, practical guide for surrogate decision-making on behalf of patients in the minimally conscious state.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S138-S138
Author(s):  
Rachael Spalding ◽  
Jenna Wilson ◽  
Barry Edelstein

Abstract When patients become incapacitated due to illness or frailty, “surrogates” work with patients’ providers to make medical decisions on their behalf. In surrogate decision-making situations, surrogates’ decision-making confidence predicts collaborative willingness, or the extent to which they are willing to work with the patient’s providers when making decisions (Spalding & Edelstein, under review). In an attempt to explain this finding, the current study examined whether perceived social norms for patient-physician collaboration and another psychological variable, consideration of future consequences, mediated the relation between decision-making confidence and collaborative willingness. Participants (n= 172) from Amazon’s Mechanical Turk completed self-report measures and a hypothetical surrogate decision-making task. A parallel multiple mediation analysis using 5000 bootstrapped samples with the PROCESS macro (Hayes, 2013) was conducted. The overall model explained 43.4% of the variance in collaborative willingness, F(4, 166) = 9.59, p< .001. There was a significant indirect effect of decision-making confidence on collaborative willingness through perceived social norms (b= .068, SE= .034, 95% CI [.014, .154]). There was not a significant indirect effect through consideration of future consequences. After including the significant indirect path through perceived social norms, the direct effect (b= .348, p< .001) of decision-making confidence on collaborative willingness was reduced (b= .243, p= .003). Thus, perceptions of social norms partially accounted for the relation between decision-making confidence and collaborative willingness. This finding illustrates how social perceptions of patient-provider collaboration can facilitate desirable medical decision-making behaviors, such as collaboration.


2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S134-S135
Author(s):  
Todd F Huzar ◽  
Monica L Gerrek ◽  
Daniel J Freet

Abstract Introduction Burn patients may present with an inability to communicate. In these cases, we need to rely on surrogates such as the Medical Power of Attorney (MPoA) or next of kin. A MPoA gives the agent the authority to participate in medical decision and in accordance with their wishes. The agent may consent to, refuse, withdraw, or withhold treatment, including life-sustaining interventions. At times, they may feel unable to participate in decision making without assistance (i.e. family members). The process can become more complicated and decision making can become “muddied” due to others influencing decisions. In our state, the MPoA is the proxy if the patient is unable to participate in decision making; however, there are cases when the patient doesn’t have an MPoA and the next of kin is the surrogate. In these cases, the next of kin would be consulted in the following order: spouse, adult children, parents, and nearest relatives. Some next of kin may not know the patient’s wishes complicating their care. Methods Two cases involving surrogates: #1: 60-year-old man with a history of HIV involved in a MVC and sustained 30% TBSA third and fourth degree burns to the face, torso, and extremities. The severity of his injuries and outcomes were discussed with his wife. She was not certain what her would want and she consulted her family because she did not know what to do; however, she knew that he would not want to live like this. After talking to the family, the kids “over-ruled” her. They wanted aggressive care despite the risks of complications and inability to perform ADLs because of his severe facial and hand burns. Case#2: 40 something year-old man with a history of schizophrenia that sustained 65% TBSA third and fourth degree burns to his face, neck, torso, and extremities due to self-immolation. The patient’s mother was identified, and it was explained to the patient’s mother that if he did survive his injury, he will not be able to perform any of his ADLs due his hand and facial burns. The patient’s mother wanted everything done for her son. Results Both patients were unable to perform ADLs due to their injuries. One patient was discharged for further inpatient care and the other was discharged home because his mother refused further care. The first patient was unable to communicate about his thoughts on his outcome. The other patient was discharged home. He was upset about what he looked like. He also told the staff that he will do his best to finish what he started. Conclusions Complex issues can arise when the patient cannot communicate their wishes and the next of kin plays the role of surrogate. The family may disagree and alter the decision-making process. After seeing this scenario play out and patients not being happy about their outcomes, the policies regarding surrogate decision making should be re-evaluated.


2014 ◽  
Vol 22 (2) ◽  
pp. 228-236 ◽  
Author(s):  
Su Hyun Kim

Background: The demand for autonomy in medical decision making is increasing among Korean people, but it is not well known why some people prefer autonomy in decision making but others do not. Research objectives: The aim of this study was to determine the extent to which Korean adults wished to exercise autonomy in the process of decision making regarding end-of-life treatment and to determine whether economic issues and family functioning, in particular, were associated with preferences for participation in decision making in Korean people. Research design: This study was a cross-sectional correlational study using a survey. Participants and research context: Data were collected using structured questionnaires from 354 patients or their families who visited ambulatory departments at two general hospitals in South Korea, recruited by the proportionate quota sampling method. Data analysis was performed using multinomial logistic regression analyses. Ethical considerations: The study was approved by the hospitals’ directors and the ethics committee of Kyungpook National University Hospital. Written informed consent was given by all participants. Findings: A majority of Korean people wanted to make autonomous decisions regarding treatment at the end of life. Preferences for autonomous decision making regarding end-of-life treatment, rather than relying on family, showed a significant increase in association with poor family functioning and low income. Discussion: Results of this study suggested the necessity for development of alternatives to a dominant traditional “family-centered” approach in Korean people, in order to enhance end-of-life decision making for people who wish to take an active role in the decision-making process. Conclusion: Healthcare providers need to examine not only patients’ preferred decision-making style but also any reasons for their choice, in particular, family conflict and financial burden.


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