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.

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.

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.

Working with Children in End-of-Life Decision Making

2009 ◽  
Vol 16 (6) ◽  
pp. 743-758 ◽  
Author(s):  
Joanne Whitty-Rogers ◽  
Marion Alex ◽  
Cathy MacDonald ◽  
Donna Pierrynowski Gallant ◽  
Wendy Austin
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Makers ◽  
Ethical Challenges ◽  
Children And Families ◽  
Best Interest ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families.

scholarly journals Hospital chaplains as ethical consultants in making difficult medical decisions

2021 ◽  
pp. medethics-2020-107096
Author(s):  
Waldemar Głusiec
Keyword(s):  
Roman Catholic ◽  
Medical Decision ◽  
Medical Decisions ◽  
Hospital Chaplains ◽  
Specialist Knowledge ◽  
Hospital Ethics ◽  
Bioethical Education ◽  
Further Development

Background and aimsFew Polish hospitals have Hospital Ethics Committee (HECs) and the services are not always adequate. In this situation, the role of HECs, in providing, among others, ethical advice on the discontinuation of persistent therapies, may be taken over by other entities. The aim of our research was to investigate, how often and on what issues hospital chaplains are asked for ethical advice in reaching difficult medical decisions.MethodsA survey of 100 Roman Catholic chaplains was conducted, that is, at least 10% of all chaplains currently working in Polish hospitals.ResultsOf the participants, 29% confirmed receiving requests for advice in making a morally difficult medical decision. Receiving this type of request was not conditional on the place of their service, duration of their pastoral mission or HEC membership. The largest group of chaplains (21%) encounter questions concerning the ethical dilemmas associated with discontinuing persistent therapy. Patients and their families most often raise issues related to the methods of birth control, and the medical staff raise the issue of termination of pregnancy—as reported by 9% and 15% of chaplains, respectively. Most of the chaplains asked for help (79%) experience a deficit of specialist knowledge in the area of medicine or ethics.ConclusionsIn order to improve the quality of ethical consultations in Polish hospitals, in addition to further development of HECs, it is postulated to develop a system for bioethical education of chaplains.

Augmenting Medical Diagnosis Decisions? An Investigation into Physicians’ Decision-Making Process with Artificial Intelligence

2021 ◽  
Author(s):  
Ekaterina Jussupow ◽  
Kai Spohrer ◽  
Armin Heinzl ◽  
Joshua Gawlitza
Keyword(s):  
Artificial Intelligence ◽  
Decision Making ◽  
Medical Errors ◽  
Decision Makers ◽  
Medical Decision ◽  
Decision Making Process ◽  
Self Monitoring ◽  
Rule Based ◽  
Human Actors

Systems based on artificial intelligence (AI) increasingly support physicians in diagnostic decisions, but they are not without errors and biases. Failure to detect those may result in wrong diagnoses and medical errors. Compared with rule-based systems, however, these systems are less transparent and their errors less predictable. Thus, it is difficult, yet critical, for physicians to carefully evaluate AI advice. This study uncovers the cognitive challenges that medical decision makers face when they receive potentially incorrect advice from AI-based diagnosis systems and must decide whether to follow or reject it. In experiments with 68 novice and 12 experienced physicians, novice physicians with and without clinical experience as well as experienced radiologists made more inaccurate diagnosis decisions when provided with incorrect AI advice than without advice at all. We elicit five decision-making patterns and show that wrong diagnostic decisions often result from shortcomings in utilizing metacognitions related to decision makers’ own reasoning (self-monitoring) and metacognitions related to the AI-based system (system monitoring). As a result, physicians fall for decisions based on beliefs rather than actual data or engage in unsuitably superficial evaluation of the AI advice. Our study has implications for the training of physicians and spotlights the crucial role of human actors in compensating for AI errors.

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.

Reducing overuse by recognising the unintended harms of good intentions

2019 ◽  
pp. bmjebm-2019-111247
Author(s):  
David Slawson ◽  
Allen F Shaughnessy
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Clinical Care ◽  
Critical Role ◽  
Medical Decision ◽  
Wide Acceptance ◽  
Hierarchy Of Evidence ◽  
Healthcare Interventions

Overdiagnosis and overtreatment—overuse—is gaining wide acceptance as a leading nosocomial intervention in medicine. Not only does overuse create anxiety and diminish patients’ quality of life, in some cases it causes harm to both patients and others not directly involved in clinical care. Reducing overuse begins with the recognition and acceptance of the potential for unintended harm of our best intentions. In this paper, we introduce five cases to illustrate where harm can occur as the result of well-intended healthcare interventions. With this insight, clinicians can learn to appreciate the critical role of probability-based, evidence-informed decision-making in medicine and the need to consider the outcomes for all who may be affected by their actions. Likewise, educators need to evolve medical education and medical decision-making so that it focuses on the hierarchy of evidence and that what ‘ought to work’, based on traditional pathophysiological, disease-focused reasoning, should be subordinate to what ‘does work’.

Surrogate Consent for Genomics Research in Intensive Care

2009 ◽  
Vol 18 (5) ◽  
pp. 418-426 ◽  
Author(s):  
Ann K. Shelton ◽  
Anne F. Fish ◽  
J. Perren Cobb ◽  
Jean A. Bachman ◽  
Ruth L. Jenkins ◽  
...  
Keyword(s):  
Intensive Care ◽  
Informed Consent ◽  
Health Care Professionals ◽  
Decision Makers ◽  
Major Theme ◽  
Intensive Care Patients ◽  
Genomics Research ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Surrogate decision makers may be poorly prepared to give informed consent for genomics research for their loved ones in intensive care. A review of the challenges and strategies associated with obtaining surrogates’ consent for genomics research in intensive care patients revealed that few well-controlled studies have been done on this topic. Yet, a major theme in the literature is the role of health care professionals in guiding surrogates through the informed consent process rather than simply witnessing a signature. Informed consent requires explicit strategies to approach potential surrogates effectively, educate them, and ensure that informed consent has been attained.

scholarly journals The decision makers’ perceptions toward the adoption of information technology by government institutions in Jordan and its affect on information accessibility, and decision making quality

2015 ◽  
Vol 13 (1) ◽  
pp. 370-378
Author(s):  
Rami Tbaishat ◽  
Saleh Khasawneh ◽  
Abdullah Mohammad Taamneh
Keyword(s):  
Decision Making ◽  
Active Role ◽  
Decision Makers ◽  
Quantitative Methodology ◽  
Training And Education ◽  
Government Institutions ◽  
Governmental Organizations ◽  
Information Accessibility

The purpose of this study was to explore the perceptions of decision-makers towards the use of this technology and its impact on access to information and the quality of decision-making. Quantitative methodology was used to obtain the information necessary to achieve the objectives of this study. The results indicated the importance of computer technology in the Jordanian governmental organizations. The results revealed that the majority of the participants expressed positive perceptions about the technology. However, they still expected to have more active role of this technology in government institutions. Also, they provided many of the factors that led to some restrictions on the use of computers. In addition, the study revealed that the demographic characteristics that would hinder perceptions towards this technology seems mostly unfounded. Based on the results of this study, Joradanian government should provide its employees more training and education opportunities on the use of this technology, in order to maintain, improve and increase the use of such technology in the future.

scholarly journals The role of non-medical factors in physicians’ decision-making process in a pediatric telemedicine service

2019 ◽  
Vol 26 (2) ◽  
pp. 1152-1176 ◽  
Author(s):  
Motti Haimi ◽  
Shuli Brammli-Greenberg ◽  
Yehezkel Waisman ◽  
Nili Stein ◽  
Orna Baron-Epel
Keyword(s):  
Decision Making ◽  
Medical Decision Making ◽  
Medical Decision ◽  
Decision Making Process ◽  
Medical Decisions ◽  
Telemedicine Service ◽  
Medical Factors ◽  
Complex Process ◽  
Clinical Scenarios

The complex process of medical decision-making is prone also to medically extraneous influences or “non-medical” factors. We aimed to investigate the possible role of non-medical factors in doctors’ decision-making process in a telemedicine setting. Interviews with 15 physicians who work in a pediatric telemedicine service were conducted. Those included a qualitative section, in which the physicians were asked about the role of non-medical factors in their decisions. Their responses to three clinical scenarios were also analyzed. In an additional quantitative section, a random sample of 339 parent -physician consultations, held during 2014–2017, was analyzed retrospectively. Various non-medical factors were identified with respect to their possible effect on primary and secondary decisions, the accuracy of diagnosis, and “reasonability” of the decisions. Various non-medical factors were found to influence physicians’ decisions. Those factors were related to the child, the applying parent, the physician, the interaction between the doctor and parents, the shift, and to demographic considerations, and were also found to influence the ability to make an accurate diagnosis and “reasonable” decisions. Our conclusion was that non-medical factors have an impact on doctor’s decisions, even in the setting of telemedicine, and should be considered for improving medical decisions in this milieu.

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