SURROGATES’ DECISION-MAKING CONFIDENCE AND COLLABORATIVE WILLINGNESS ON THE POST: THE ROLE OF SOCIAL NORMS

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.

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All things considered: Surrogate decision-making on behalf of patients in the minimally conscious state

Clinical Ethics ◽

10.1177/1477750920927177 ◽

2020 ◽

Vol 15 (3) ◽

pp. 111-119

Author(s):

L Syd M Johnson ◽

Kathy L Cerminara

Keyword(s):

Decision Making ◽

Medical Decision Making ◽

Vegetative State ◽

Minimally Conscious State ◽

Conscious State ◽

Disorders Of Consciousness ◽

Medical Decision ◽

Surrogate Decision Making ◽

Surrogate Decision ◽

Minimally Conscious

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.

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Ethics of Pediatric and Young Adult Medical Decision-Making: Case-Based Discussions Exploring Consent, Capacity, and Surrogate Decision-Making

MedEdPORTAL ◽

10.15766/mep_2374-8265.11094 ◽

2021 ◽

Vol 17 (1) ◽

pp. 11094

Author(s):

Jennifer deSante-Bertkau ◽

Lori A. Herbst

Keyword(s):

Decision Making ◽

Young Adult ◽

Medical Decision Making ◽

Medical Decision ◽

Surrogate Decision Making ◽

Surrogate Decision ◽

Case Based

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569 Surrogate Decision Making: Who Has the Ultimate Say in Patient Care?

Journal of Burn Care & Research ◽

10.1093/jbcr/irab032.219 ◽

2021 ◽

Vol 42 (Supplement_1) ◽

pp. S134-S135

Author(s):

Todd F Huzar ◽

Monica L Gerrek ◽

Daniel J Freet

Keyword(s):

Decision Making ◽

The Other ◽

Medical Decision ◽

Surrogate Decision Making ◽

Next Of Kin ◽

Fourth Degree ◽

Her Family ◽

The Family ◽

History Of ◽

Surrogate Decision

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.

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

Palliative & Supportive Care ◽

10.1017/s1478951520000401 ◽

2020 ◽

pp. 1-9

Author(s):

Rachael Spalding ◽

JoNell Strough ◽

Barry Edelstein

Keyword(s):

Decision Making ◽

Mechanical Ventilation ◽

End Of Life ◽

Contextual Factors ◽

Medical Decision ◽

Decision Making Process ◽

Surrogate Decision Making ◽

Willingness To Serve ◽

Surrogate Decision ◽

End Of Life Treatment

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.

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Determining medical decision-making capacity in brain tumor patients: why and how?

Neuro-Oncology Practice ◽

10.1093/nop/npaa040 ◽

2020 ◽

Vol 7 (6) ◽

pp. 599-612 ◽

Cited By ~ 1

Author(s):

Andrea Pace ◽

Johan A F Koekkoek ◽

Martin J van den Bent ◽

Helen J Bulbeck ◽

Jane Fleming ◽

...

Keyword(s):

Decision Making ◽

Brain Tumor ◽

Medical Decision Making ◽

Clinical Decision Making ◽

Best Interests ◽

Medical Decision ◽

Surrogate Decision Making ◽

Tumor Patients ◽

Decision Making Capacity ◽

Surrogate Decision

Abstract Background Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. Methods A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. Results A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient’s “best interests” and wishes are guaranteed. Several methods are available that may help to enhance patients’ consent capacity. Conclusions Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients’ consent capacity, and alternative procedures, including surrogate consent.

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What Would People Think? Social Norms, Willingness to Serve as a Surrogate, and End-of-Life Treatment Decisions

Innovation in Aging ◽

10.1093/geroni/igaa057.1359 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 421-421

Author(s):

Rachael Spalding ◽

JoNell Strough ◽

Barry Edelstein

Keyword(s):

Decision Making ◽

Mechanical Ventilation ◽

End Of Life ◽

Contextual Factors ◽

Medical Decision ◽

Decision Making Process ◽

Surrogate Decision Making ◽

Willingness To Serve ◽

Surrogate Decision ◽

End Of Life Treatment

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.

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Comparisons of guardianship laws and surrogate decision-making practices in China, Japan, Thailand and Australia: a review by the Asia Consortium, International Psychogeriatric Association (IPA) capacity taskforce

International Psychogeriatrics ◽

10.1017/s104161021400266x ◽

2015 ◽

Vol 27 (6) ◽

pp. 1029-1037 ◽

Cited By ~ 11

Author(s):

Joshua Tsoh ◽

Carmelle Peisah ◽

Jin Narumoto ◽

Nahathai Wongpakaran ◽

Tinakon Wongpakaran ◽

...

Keyword(s):

Decision Making ◽

Asia Pacific ◽

Medical Decision ◽

Ageing Population ◽

Pacific Region ◽

Surrogate Decision Making ◽

Asia Pacific Region ◽

Advanced Planning ◽

Proxy Decision Making ◽

Surrogate Decision

ABSTRACTBackground:The International Psychogeriatric Association (IPA) capacity taskforce was established to promote the autonomy, proper access to care, and dignity of persons with decision-making disabilities (DMDs) across nations. The Asia Consortium of the taskforce was established to pursue these goals in the Asia-Pacific region. This paper is part of the Asia Consortium's initiative to promote understanding and advocacy in regard to surrogate decision-making across the region.Method:The current guardianship laws are compared, and jurisdictional variations in the processes for proxy decision-making to support persons with DMDs and other health and social needs in China, Japan, Thailand, and Australia are explored.Results:The different Asia-Pacific countries have various proxy decision-making mechanisms in place for persons with DMDs, which are both formalized according to common law, civil law, and other legislation, and shaped by cultural practices. Various processes for guardianship and mechanisms for medical decision-making and asset management exist across the region. Processes that are still evolving across the region include those that facilitate advanced planning as a result of the paucity of legal structures for enduring powers of attorney (EPA) and guardianship in some regions, and the struggle to achieve consensual positions in regard to end-of-life decision-making. Formal processes for supporting decision-making are yet to be developed.Conclusions:The diverse legal approaches to guardianship and administration must be understood to meet the challenges of the rapidly ageing population in the Asia-Pacific region. Commonalities in the solutions and difficulties faced in encountering these challenges have global significance.

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