Surrogate’s Personal Sense of Duty as a Crucial Element in Medical Decision Making

2021 ◽  
pp. 7-26
Author(s):  
Chris Feudtner ◽  
Theodore E. Schall ◽  
Douglas L. Hill
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Adult Child ◽  
Decision Makers ◽  
Medical Decision ◽  
Single Event ◽  
Medical Decisions ◽  
The Social ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Surrogates who must make medical decisions for other people—most often, loved ones—face difficult challenges not acknowledged in current models of medical decision making. Furthermore, medical decisions are typically not a single event, but an ongoing event that evolves over time. This chapter presents a broader conceptualization of medical decision making, highlighting that (1) surrogate decision makers often face multiple problems, not a single clear problem; (2) the path to the decision maker’s desired goal is often unclear and often constrained by past decisions; (3) the social relationships between the surrogate and the patient (parent, adult child, spouse) influence the decision making as surrogates try to fulfill their role as a good parent, good son/daughter, or good spouse; and (4) surrogate decision makers often judge themselves negatively in ways that influence their decisions and the outcome. Clinicians who recognize these complex influences on surrogate decision making may be better able to support surrogates through this difficult process.

The new futility? The rhetoric and role of “suffering” in pediatric decision-making

2019 ◽  
Vol 27 (1) ◽  
pp. 16-27
Author(s):  
Erica K Salter
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Medical Decision ◽  
Value Judgments ◽  
Medical Decisions ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Pediatric Decision Making

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

Ethics in Pediatric Anesthesiology

2018 ◽  
Author(s):  
Monica Shah ◽  
David Waisel
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Ethics Committees ◽  
Decision Makers ◽  
Best Interest ◽  
Medical Decisions ◽  
Risks And Benefits ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Life Therapy

Ethical principles affect daily decision-making in pediatric anesthesiology. These medical decisions are interlaced with the ethical components of informed consent and obligations to the child and family. Informed consent in pediatrics includes the concepts of best interest, in which the parents or other surrogate decision-makers choose acceptable treatment for the child, and assent, which enables children to participate in decision-making to the best of their ability. Of equal significance to informed consent, the process of informed refusal requires anesthesiologists to more fully inform children and their guardians about risks and benefits while respecting refusal of assent and avoiding coercion. Pediatric considerations regarding end-of-life therapy are slightly different than adult considerations. To help resolve these ethical dilemmas, ethics committees are available for consultations to assist the medical team, family members, and patients in order to make the best decision for the child.

Emotions and Medical Decision-Making

2020 ◽  
Vol 83 (2) ◽  
pp. 174-194
Author(s):  
Amanda M. Gengler
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Medical Decision Making ◽  
Medical Decision ◽  
Decision Making Process ◽  
Medical Decisions ◽  
Interactive Process ◽  
The Social ◽  
Life Threatening ◽  
Ethnographic Data

Sociologists have written surprisingly little about the role emotions play in medical decision-making, largely ceding this terrain to psychologists who conceptualize emotional influences on decision-making in primarily cognitive and individualistic terms. In this article, I use ethnographic data gathered from parents and physicians caring for children with life-threatening conditions to illustrate how emotions enter the medical decision-making process in fundamentally interactional ways. Because families and physicians alike often defined emotions as useful information to guide the decision-making process, both parties could leverage them in health care interactions by eliciting or demonstrating emotional investment, strategically deploying emotionally charged symbols, and using emotions as tiebreakers to help themselves and one another make choices in the midst of uncertainty. Constructing emotions as valuable in the decision-making process and effectively marshalling them in these ways offered a number of advantages. It could make decisions easier to arrive at, help people feel more confident in the decisions they made, and reduce interpersonal conflict. By connecting the dynamic role emotions can play in the interactive process through which medical decisions are made to the social advantages they can produce, I point to an underappreciated avenue through which inequalities in health care are perpetuated.

Support for management medical decisions and the nature of uncertainty in them

2021 ◽  
Author(s):  
S.Yu. Zhuleva ◽  
A.V. Kroshilin ◽  
S.V. Kroshilina
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Medical Information ◽  
General Scheme ◽  
The Body ◽  
Medical Decision ◽  
Problem Situation ◽  
Medical Decisions ◽  
Inaccurate Information ◽  
Individual Decisions

The process of making a medical decision is characterized by a lack of knowledge and inconsistency of the available information, the lack of the possibility of attracting competent medical experts, limited time resources, incomplete or inaccurate information about the patient's condition. These aspects may be the causes of medical errors, which lead to further aggravation of the problem situation. Purpose – it is necessary to define and justify managerial medical decisions and types of medical information in conditions of uncertainty, when each variant of the sets of outcomes of the situation (recommendations) has its own unique set of values. The fundamental difference between this process for medical use is the concept of the "best medical solution", in which the key role is given to the patient's state of health in obtaining and evaluating alternatives, as well as the need to take into account the time, adverse reactions of the body and the costs of implementing this solution. In the medical field, support for medical decision-making can be classified as organizational-managerial and therapeutic-diagnostic, but both are determined by the position of the person making the medical decision and are aimed at effective management of the medical institution as a whole. The article describes the causes and factors of the nature of uncertainty in the tasks of supporting medical decision-making in medical-diagnostic and organizational-managerial areas. The analysis of the features of supporting medical decision-making in conditions of uncertainty is carried out. Approaches and directions in this area, as well as the concept of “solution”, are considered. The essence of the management medical decision is reflected. The classification of management medical decisions is given, the requirements that are imposed on them are highlighted. The features of the development of management medical solutions in the conditions of incompleteness and uncertainty, the problems that arise when they are implemented in information systems are presented. The general scheme of the process of creating a management medical solution is shown. The features of making group and individual decisions are reflected. The algorithm of actions of the person making the medical decision in the conditions of uncertainty, incompleteness and risk in medical subject areas is presented.

Prognostication and Ethics

2018 ◽  
pp. 265-275 ◽  
Author(s):  
David Y. Hwang ◽  
Douglas B. White
Keyword(s):  
Traumatic Brain Injury ◽  
Decision Making ◽  
Decision Makers ◽  
Care Planning ◽  
Shared Decision ◽  
Inappropriate Treatment ◽  
Surrogate Decision Makers ◽  
Advance Care ◽  
Key Topics ◽  
Surrogate Decision

This chapter provides an overview of prognostication and key topics in ethics as they relate to the practice of neurocritical care. Challenges with prognostication are summarized. Outcome prognostication tools for ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and traumatic brain injury are outlined along with a discussion of their limitations. Best practices for communicating prognosis are reviewed. Shared decision-making with surrogate decision-makers in intensive care units is discussed in detail, with attention to advance care planning documentation and resolution of situations in which clinicians may have conscientious objections to potentially inappropriate treatment.

People Reject Algorithms in Uncertain Decision Domains Because They Have Diminishing Sensitivity to Forecasting Error

2020 ◽  
Vol 31 (10) ◽  
pp. 1302-1314 ◽  
Author(s):  
Berkeley J. Dietvorst ◽  
Soaham Bharti
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Decision Makers ◽  
Medical Decision ◽  
Human Judgment ◽  
Forecasting Error ◽  
Self Driving Cars ◽  
Diminishing Sensitivity

Will people use self-driving cars, virtual doctors, and other algorithmic decision-makers if they outperform humans? The answer depends on the uncertainty inherent in the decision domain. We propose that people have diminishing sensitivity to forecasting error and that this preference results in people favoring riskier (and often worse-performing) decision-making methods, such as human judgment, in inherently uncertain domains. In nine studies ( N = 4,820), we found that (a) people have diminishing sensitivity to each marginal unit of error that a forecast produces, (b) people are less likely to use the best possible algorithm in decision domains that are more unpredictable, (c) people choose between decision-making methods on the basis of the perceived likelihood of those methods producing a near-perfect answer, and (d) people prefer methods that exhibit higher variance in performance (all else being equal). To the extent that investing, medical decision-making, and other domains are inherently uncertain, people may be unwilling to use even the best possible algorithm in those domains.

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

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.

scholarly journals The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

2020 ◽  
Vol 5 (2) ◽  
pp. 238146832094070
Author(s):  
Andrea Meisman ◽  
Nancy M. Daraiseh ◽  
Phil Minar ◽  
Marlee Saxe ◽  
Ellen A. Lipstein
Keyword(s):  
Ulcerative Colitis ◽  
Decision Making ◽  
Decision Support ◽  
Focus Groups ◽  
Medical Decision Making ◽  
Medical Decision ◽  
Support Needs ◽  
Final Decision ◽  
Care Providers ◽  
Medical Decisions

Purpose. To understand the medical decision support needs specific to adolescents and young adults (AYAs) with ulcerative colitis (UC) and inform development of a decision support tool addressing AYAs’ preferences. Methods. We conducted focus groups with AYAs with UC and mentors from a pediatric inflammatory bowel disease clinic’s peer mentoring program. Focus groups were led by a single trained facilitator using a semistructured guide aimed at eliciting AYAs’ roles in medical decision making and perceived decision support needs. All focus groups were audio recorded, transcribed, and coded by the research team. Data were analyzed using content analysis and the immersion crystallization method. Results. The facilitator led six focus groups: one group with peer mentors aged 18 to 24 years, three groups with patients aged 14 to 17 years, and two groups with patients aged 18 to 24 years. Decision timing and those involved in decision making were identified as interacting components of treatment decision making. Treatment decisions by AYAs were further based on timing, location (inpatient v. outpatient), and family preference for making decisions during or outside of clinic. AYAs involved parents and health care providers in medical decisions, with older participants describing themselves as “final decision makers.” Knowledge and experience were facilitators identified to participating in medical decision making. Conclusions. AYAs with UC experience changes to their roles in medical decisions over time. The support needs identified will inform the development of strategies, such as decision support tools, to help AYAs with chronic conditions develop and use skills needed for participating in medical decision making.

scholarly journals Gamble on the Uncertain. Negotiating Medical Decision-Making

2016 ◽  
Vol 12 (4) ◽  
pp. 44-59
Author(s):  
Helena Serra
Keyword(s):  
Decision Making ◽  
Strategic Alliances ◽  
Medical Decision Making ◽  
Participant Observation ◽  
Medical Decision ◽  
Structured Interviews ◽  
Complex Processes ◽  
Transplant Program ◽  
The Social ◽  
Constructivist Approaches

The aim of this paper is to analyze the medical decision-making process in the admission of patients into a Liver Transplant Program in a hospital in Lisbon, Portugal. The relationships and main strategies established among the medical specializations involved in this process will be investigated. The theoretical basis was drawn from medical sociology, in particular, from the social constructivist approaches, which highlight the relation between medical power and knowledge in the construction of medical decision-making. I attempt to elucidate the processes of negotiation through which a medical decision is constructed. The research methodology included non-participant observation and semi-structured interviews with participants from the two medical specializations of interest: liver surgeons and hepatologists. The management of risk and uncertainty in relation to patients’ access to liver transplantation is discussed and the strategic alliances that are formed during medical decision-making in search of consensus are investigated. The research findings show that medical practices and knowledge do not converge linearly to produce a coherent network of actions with a view to decision-making. Instead, medical decision-making is constructed through complex processes of negotiation. The different natures and levels of uncertainty and indetermination that are inherent in the social world of medicine have a fundamental influence on medical decision-making.

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