Healthcare Decision-Making, Surrogate Decision-Makers, and Informed Consent

2021 ◽  
Author(s):  
Shawna M. Butler
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Decision Makers ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Dementia, Healthcare Decision Making, and Disability Law

2019 ◽  
Vol 47 (S4) ◽  
pp. 25-33 ◽  
Author(s):  
Megan S. Wright
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Healthcare Decision ◽  
Healthcare Decision Making ◽  
Moderate Dementia ◽  
Disability Law ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Alternative Decision ◽  
Made In

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions.

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.

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.

scholarly journals Decision Making in the PICU: An Examination of Factors Influencing Participation Decisions in Phase III Randomized Clinical Trials

2014 ◽  
Vol 2014 ◽  
pp. 1-6 ◽  
Author(s):  
Laura E. Slosky ◽  
Marilyn Stern ◽  
Natasha L. Burke ◽  
Laura A. Siminoff
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Randomized Clinical Trials ◽  
Pediatric Intensive Care ◽  
Phase Iii ◽  
Older Children ◽  
Decision Making Processes ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Participation Decisions

Background. In stressful situations, decision making processes related to informed consent may be compromised. Given the profound levels of distress that surrogates of children in pediatric intensive care units (PICU) experience, it is important to understand what factors may be influencing the decision making process beyond the informed consent. The purpose of this study was to evaluate the role of clinician influence and other factors on decision making regarding participation in a randomized clinical trial (RCT).Method. Participants were 76 children under sedation in a PICU and their surrogate decision makers. Measures included the Post Decision Clinician Survey, observer checklist, and post-decision interview.Results. Age of the pediatric patient was related to participation decisions in the RCT such that older children were more likely to be enrolled. Mentioning the sponsoring institution was associated with declining to participate in the RCT. Type of health care provider and overt recommendations to participate were not related to enrollment.Conclusion. Decisions to participate in research by surrogates of children in the PICU appear to relate to child demographics and subtleties in communication; however, no modifiable characteristics were related to increased participation, indicating that the informed consent process may not be compromised in this population.

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.

Abstract 12789: Development of the Tool to EMPOwer Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest

Circulation ◽  
2021 ◽  
Vol 144 (Suppl_2) ◽  
Author(s):  
Sarah M Perman ◽  
Bonnie J Siry-Bove ◽  
Benjamin Abella ◽  
Stacie L Daugherty ◽  
Edward Havranek ◽  
...  
Keyword(s):  
Decision Making ◽  
Cardiac Arrest ◽  
Decision Aid ◽  
Reading Level ◽  
Decision Makers ◽  
Structured Interviews ◽  
Patient Decision ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Grade Reading Level

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.

Clinician Ethical Perspectives on Extracorporeal Membrane Oxygenation in Practice

2021 ◽  
pp. 104990912110410
Author(s):  
Gina M. Piscitello ◽  
Rene S. Bermea ◽  
John W. Stokes ◽  
Whitney D. Gannon ◽  
Anthony J. Kanelidis ◽  
...  
Keyword(s):  
Informed Consent ◽  
Extracorporeal Membrane Oxygenation ◽  
Decision Makers ◽  
Ethical Challenge ◽  
Cross Sectional Survey ◽  
Exclusion Criteria ◽  
Cross Sectional ◽  
Membrane Oxygenation ◽  
Surrogate Decision Makers ◽  
Surrogate Decision

Purpose: Extracorporeal membrane oxygenation (ECMO) is an expensive and scarce life sustaining treatment provided to certain critically ill patients. Little is known about the informed consent process for ECMO or clinician viewpoints on ethical complexities related to ECMO in practice. Methods: We sent a cross-sectional survey to all departments providing ECMO within 7 United States hospitals in January 2021. One clinician from each department completed the 42-item survey representing their department. Results: Fourteen departments within 7 hospitals responded (response rate 78%, N = 14/18). The mean time spent consenting patients or surrogate decision-makers for ECMO varied, from 7.5 minutes (95% CI 5-10) for unstable patients to 20 minutes (95% CI 15-30) for stable patients (p = 0.0001). Few clinician respondents (29%) report patients or surrogate decision-makers always possess informed consent for ECMO. Most departments (92%) have absolute exclusion criteria for ECMO such as older age (43%, cutoffs ranging from 60-75 years), active malignancy (36%), and elevated body mass index (29%). A significant minority of departments (29%) do not always offer the option to withdraw ECMO to patients or surrogate decision-makers. For patients who cannot be liberated from ECMO and are ineligible for heart or lung transplant, 36% of departments would recommend the patient be removed from ECMO and 64% would continue ECMO support. Conclusion: Adequate informed consent for ECMO is a major ethical challenge, and the content of these discussions varies. Use of categorical exclusion criteria and withdrawal of ECMO if a patient cannot be liberated from it differ among departments and institutions.

PATIENT-CENTERED DECISION MAKING: LESSONS FROM MULTI-CRITERIA DECISION ANALYSIS FOR QUANTIFYING PATIENT PREFERENCES

2017 ◽  
Vol 34 (1) ◽  
pp. 105-110 ◽  
Author(s):  
Kevin Marsh ◽  
J. Jaime Caro ◽  
Erica Zaiser ◽  
James Heywood ◽  
Alaa Hamed
Keyword(s):  
Decision Making ◽  
Decision Analysis ◽  
Patient Preferences ◽  
Good Practice ◽  
Decision Makers ◽  
Healthcare Decision ◽  
Patient Centered ◽  
Multi Criteria Decision Analysis ◽  
Healthcare Decision Making ◽  
Decision Making Processes

Objectives: Patient preferences should be a central consideration in healthcare decision making. However, stories of patients challenging regulatory and reimbursement decisions has led to questions on whether patient voices are being considered sufficiently during those decision making processes. This has led some to argue that it is necessary to quantify patient preferences before they can be adequately considered.Methods: This study considers the lessons from the use of multi-criteria decision analysis (MCDA) for efforts to quantify patient preferences. It defines MCDA and summarizes the benefits it can provide to decision makers, identifies examples of MCDAs that have involved patients, and summarizes good practice guidelines as they relate to quantifying patient preferences.Results: The guidance developed to support the use of MCDA in healthcare provide some useful considerations for the quantification of patient preferences, namely that researchers should give appropriate consideration to: the heterogeneity of patient preferences, and its relevance to decision makers; the cognitive challenges posed by different elicitation methods; and validity of the results they produce. Furthermore, it is important to consider how the relevance of these considerations varies with the decision being supported.Conclusions: The MCDA literature holds important lessons for how patient preferences should be quantified to support healthcare decision making.

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