scholarly journals Constructing authentic decisions: proxy decision making for research involving adults who lack capacity to consent

2020 ◽  
pp. medethics-2019-106042
Author(s):  
Victoria Shepherd ◽  
Mark Sheehan ◽  
Kerenza Hood ◽  
Richard Griffith ◽  
Fiona Wood
Keyword(s):  
Decision Making ◽  
Ethical Framework ◽  
Surrogate Decision Making ◽  
Capacity To Consent ◽  
Complex Process ◽  
Proxy Decision Making ◽  
Surrogate Decision ◽  
The Right ◽  
The Relationship ◽  
Pluralistic World

Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations.

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

2015 ◽  
Vol 27 (6) ◽  
pp. 1029-1037 ◽  
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.

Considering a family systems approach to surrogate decision-making.

2017 ◽  
Vol 35 (1) ◽  
pp. 85-87
Author(s):  
Elizabeth K. Vig ◽  
Janelle S. Taylor ◽  
Ann M. O'Hare
Keyword(s):  
Decision Making ◽  
Family Systems ◽  
Systems Approach ◽  
Surrogate Decision Making ◽  
Surrogate Decision

scholarly journals Religion and Spirituality in Surrogate Decision Making for Hospitalized Older Adults

2015 ◽  
Vol 55 (3) ◽  
pp. 765-777 ◽  
Author(s):  
Kristin N. Geros-Willfond ◽  
Steven S. Ivy ◽  
Kianna Montz ◽  
Sara E. Bohan ◽  
Alexia M. Torke
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Surrogate Decision Making ◽  
Religion And Spirituality ◽  
Hospitalized Older Adults ◽  
Surrogate Decision

scholarly journals A Scenario-Based Investigation of Surrogate Decision Making for Older Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 703-703
Author(s):  
Yuxin Zhao ◽  
Benjamin Katz ◽  
Pamela Teaster
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Financial Management ◽  
Self Efficacy ◽  
Decision Makers ◽  
Surrogate Decision Making ◽  
Insurance Company ◽  
Surrogate Decision ◽  
Critically Ill Adults ◽  
Amazon's Mechanical Turk

Abstract Surrogate decisions involve complex, challenging choices; surrogate decision-makers make treatment decisions for approximately 40% of hospitalized adults and 70% of older adults, and up to 95% of critically ill adults of any age. The purpose of our study was to understand how people make decisions for others and how surrogate decision making is linked to people’s cognition, self-efficacy, and demographics, especially differences in acute (e.g., health and medical care, financial management, and end of life) versus general scenarios (spending time with family, contacting an insurance company on behalf of a family member). Participants were recruited through Amazon’s Mechanical Turk. We collected data from 290 adult participants aged 18 years or older. On average, people reported a higher level of confidence in general versus acute scenario. The differences of confidence in scenario-based surrogate decision-making links to decision-makers’ cognition, self-efficacy, the experience of decision-making, the experience of caregiving, and demographic factors.

Economic and Social Rights, Budgets and the Convention on the Rights of the Child

2013 ◽  
Vol 21 (2) ◽  
pp. 248-277 ◽  
Author(s):  
Aoife Nolan
Keyword(s):  
Decision Making ◽  
Social Rights ◽  
Child Rights ◽  
Rights Of The Child ◽  
Budget Analysis ◽  
Key Issues ◽  
Significant Obstacle ◽  
The Right ◽  
The Relationship

Recent years have seen an explosion in methodologies for monitoring children’s economic and social rights (ESR). Key examples include the development of indicators, benchmarks, child rights-based budget analysis and child rights impact assessments. The Committee on the Right of the Child has praised such tools in its work and has actively promoted their usage. Troublingly, however, there are serious shortcomings in the Committee’s approach to the ESR standards enshrined in the UN Convention on the Rights of the Child (CRC), which threaten to impact upon the efficacy of such methodologies. This article argues that the Committee has failed to engage with the substantive obligations imposed by Article 4 and many of the specific ESR guaranteed in the CRC in sufficient depth. As a result, that body has not succeeded in outlining a coherent, comprehensive child rights-specific ESR framework. Using the example of child rights-based budget analysis, the author claims that this omission constitutes a significant obstacle to those seeking to evaluate the extent to which states have met their ESR-related obligations under the CRC. The article thus brings together and addresses key issues that have so far received only very limited critical academic attention, namely, children’s ESR under the CRC, the relationship between budgetary decision-making and the CRC, and child rights-based budget analysis.

Supporting Life through Tube Feeding: Factors Influencing Surrogate Decision-Making

1993 ◽  
Vol 12 (3) ◽  
pp. 298-310 ◽  
Author(s):  
Donna Wilson
Keyword(s):  
Decision Making ◽  
Tube Feeding ◽  
Surrogate Decision Making ◽  
Grand Nombre ◽  
Factors Influencing ◽  
Etude De Cas ◽  
Étude De Cas ◽  
Surrogate Decision ◽  
Professionnels De La Santé

RÉSUMÉUn grand nombre de personnes ont besoin d'une sonde au cours de la dernière étape de leur vie. Par ailleurs, la décision du maintien des fonctions vitales revient souvent à une autre partie. Lorsque les membres d'une famille sont tenus de prendre cette décision pour un patient incompétent, quels facteurs influenceront leur choix? Une étude de cas et un sondage ethnométhodologique ont révélé clairement et en détail les facteurs ayant influencé une femme devant décider si les fonctions vitales de sa mére en état d'incapacité totale et de grave débilité devaient être maintenues au moyen d'une sonde pour gavage. La décision était difficile à prendre et survenait à un moment critique. Malheureusement, les facteurs ayant eu la plus forte influence furent les suivants: a) le besoin pressant d'une décision en raison d'un décès imminent; b) une lacune quant à la connaissance des valeurs et des préférences de la mère au sujet du maintien de ses fonctions vitales au moyen d'une sonde pour gavage; c) un manque de connaissance quant à la réalité de l'alimentation par sonde; et d) la croyance que cette mesure ne prolongerait pas la vie ni la souffrance de la mère. De plus, neuf autres facteurs, moins importants, ont été déterminés. Cette étude est principalement axée sur l'amélioration de la sensibilité des professionnels de la santé vis-à-vis de l'angoisse qu'éprouvent les gens à décider de maintenir les fonctions vitales d'un proche et du mode de décision en tant que tel.

Sign in / Sign up

Export Citation Format

Share Document