How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults

Devnani, Rohit; Slaven, James E.; Bosslet, Gabriel T.; Montz, Kianna; Inger, Lev; Burke, Emily S.; Torke, Alexia M.

doi:10.1007/s11606-017-4158-z

Cited by 30 publications

(29 citation statements)

References 28 publications

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“…The findings were also consistent with a previous study that explored how proxies made decisions about treatment and care (as opposed to research) which found that, while surrogates considered many factors, they focused more often on the person's well-being than simply on their preferences [27]. Similarly, both the previous research about treatment decisions and our study about research decisions found that prior conversations with the person about their preferences was not a significant factor in whether proxies prioritised well-being or preferences [27].…”

Section: Discussionsupporting

confidence: 89%

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

et al. 2019

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Background Research into dementia and other conditions connected with cognitive impairments is essential but conducting research with populations who lack capacity to provide consent involves a number of ethical, legal and practical challenges. In England and Wales, family members can act as a consultee or legal representative on behalf of someone who lacks capacity. However, there is a paucity of research about how family members make decisions concerning research participation. Objective To explore family members’ experiences of proxy decision-making for research. Understanding how proxy decisions are made could lead to interventions to support greater inclusion of individuals in research who have impaired decision-making capacity. Methods Semi-structured interviews were conducted with a purposive sample of 17 family members who had experience as a proxy for making decisions about participation in research, including those who had agreed to participation and those who declined. Thematic analysis was used to examine experiences and generate findings for research practice and to develop future supportive interventions. Results Proxy decision-making is highly contextualised. Proxies balance a number of factors when deciding about research participation, including the person’s values and preferences, within the specific context of the study, and the practicalities of being involved. Proxies use these factors to construct a decision that is authentic to the person they care for. Conclusions Proxy decision-making for research is a complex process with inter-woven layers of decision-making. Decisions can be problematic for some proxies who may benefit from decision support to make an informed decision about research participation on behalf of a family member.

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Section: Discussionsupporting

confidence: 89%

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

et al. 2019

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“…However, in the current study, patient's health was more important than other studied factors, including patient's preference, for both ME and EA respondents and from all the three perspectives. Consistently, a previous study using simple rating and dichotomization showed that 78% of surrogates (mostly white educated US women) focused more on patient's well-being than patient's preferences [6]. A predominance of consequentialist attitude over autonomy-based attitude was also observed in lay people approach to medical use of placebos [34] and organ donation, [35] providing support to the concept that "good" may be more fundamental than "right" and to the importance of "harm/care" as one of the psychological foundations of morality [36].…”

Section: Importance Of Patient's Healthsupporting

confidence: 75%

“…However, surrogates may base their decisions, at least in part, on what they think is in the patient’s best interests; what they themselves would have wanted given the circumstances; their needs, burdens, and religious/ spiritual beliefs; and/or their family needs, including maintaining family cohesion. Further, surrogates’ decisions may be emotion-driven such as by fear of loss, feeling of guilt, and desire to pursue any chance of recovery [ 3 – 6 ]. Furthermore, the patient’s own wishes may be difficult to predict because they may be circumstance-dependent and may be influenced not only by consequences to the patient but also to the surrogate, family, friends, and society.…”

Section: Introductionmentioning

confidence: 99%

Factors underlying surrogate medical decision-making in middle eastern and east Asian women: a Q-methodology study

et al. 2020

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Background: It is not clear how lay people prioritize the various, sometimes conflicting, interests when they make surrogate medical decisions, especially in non-Western cultures. The extent such decisions are perspective-related is also not well documented. Methods: We explored the relative importance of 28 surrogate decision-making factors to 120 Middle-Eastern (ME) and 120 East-Asian (EA) women from three perspectives, norm-perception (N), preference as patient (P), and preference as surrogate decision-maker (S). Each respondent force-ranked (one to nine) 28 opinion-items according to each perspective. Items' ranks were analyzed by averaging-analysis and Q-methodology. Results: Respondents' mean (SD) age was 33.2 (7.9) years; all ME were Muslims, 83% of EA were Christians. "Trying everything possible to save patient," "Improving patient health," "Patient pain and suffering," and/or "What is in the best interests of patient" were the three most-important items, whereas "Effect of caring for patient on all patients in society," "Effect of caring for patient on patients with same disease," and/or "Cost to society from caring for patient" were among the three least-important items, in each ME and EA perspectives. P-perspective assigned higher mean ranks to family and surrogate's needs and burdens-related items, and lower mean rank to "Fear of loss" than S-perspective (p<0.001). ME assigned higher mean ranks to "Medical facts" and "Surrogate own wishes for patient" and lower mean rank to "Family needs" in all perspectives (p<0.001). Q-methodology identified models that were relatively patient's preference-, patient's religious/spiritual beliefs-, or emotion-dependent (all perspectives); medical facts-dependent (N-and S-perspectives), financial needs-dependent (P-and S-perspectives), and family needs-dependent (P-perspective). Conclusions: 1) Patient's health was more important than patient's preference to ME and EA women; society interest was least important. 2) Family and surrogate's needs/ burdens were more important, whereas fear of loss was less important to respondents as patients than as surrogate decision-makers. 3) Family needs were more important to EA than ME respondents, the opposite was true for medical facts and surrogate's wishes for patient. 4) Q-methodology models that relatively emphasized various surrogate decision-making factors overlapped the ME and EA women' three perspectives.

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“…When making decisions on behalf of patients with disorders of consciousness, surrogate decisionmaking may reflect a combination of different considerations. 19,20,21,22 Surrogates may use conversations with physicians about the patient's prognosis, or the possible trajectory of their recovery or decline, to make decisions. Surrogates also tend to weigh the burdens of continued treatment on the patient.…”

Section: The Standard View Of Surrogate Decisionmakingmentioning

confidence: 99%

Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury

Graham¹

2020

Camb Q Healthc Ethics

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Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.

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How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults

Abstract: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

Cited by 30 publications

References 28 publications

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

‘It’s a tough decision’: a qualitative study of proxy decision-making for research involving adults who lack capacity to consent in UK

Factors underlying surrogate medical decision-making in middle eastern and east Asian women: a Q-methodology study

Precedent Autonomy and Surrogate Decisionmaking After Severe Brain Injury

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