scholarly journals Medical Decision-Making in Oncology for Patients Lacking Capacity

Author(s):  
Jonathan M. Marron ◽  
Kaitlin Kyi ◽  
Paul S. Appelbaum ◽  
Allison Magnuson

Modern oncology practice is built upon the idea that a patient with cancer has the legal and ethical right to make decisions about their medical care. There are situations in which patients might no longer be fully able to make decisions on their own behalf, however, and some patients never were able to do so. In such cases, it is critical to be aware of how to determine if a patient has the ability to make medical decisions and what should be done if they do not. In this article, we examine the concept of decision-making capacity in oncology and explore situations in which patients may have altered/diminished capacity (e.g., depression, cognitive impairment, delirium, brain tumor, brain metastases, etc.) or never had decisional capacity (e.g., minor children or developmentally disabled adults). We describe fundamental principles to consider when caring for a patient with cancer who lacks decisional capacity. We then introduce strategies for capacity assessment and discuss how clinicians might navigate scenarios in which their patients could lack capacity to make decisions about their cancer care. Finally, we explore ways in which pediatric and medical oncology can learn from one another with regard to these challenging situations.

2021 ◽  
pp. medethics-2020-107078
Author(s):  
Mark Navin ◽  
Jason Adam Wasserman ◽  
Devan Stahl ◽  
Tom Tomlinson

The capacity to designate a surrogate (CDS) is not simply another kind of medical decision-making capacity (DMC). A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases (eg, Alzheimer’s disease). That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions.


Author(s):  
Stephen L. Read ◽  
James E. Spar

Medical decision-making based on informed consent is a fundamental principle of ethical medical practice. When a patient lacks medical decisional capacity and is unable to give truly informed consent, an agent must be sought to act on the behalf of the person. This chapter reviews the principles underlying determination of the capacity to give informed consent regarding healthcare decisions in a clinical setting. Cognitive loss, emotional distress, or disengagement or the perception that the patient is choosing unwisely or as a result of influence may be concerns that lead to consultation. In contrast to the clear standards for medical decision-making capacity, statutory guidance and case law are essentially nonexistent regarding what standard applies to the capacity to create or to change an advance health directive (AHCD) or to change or designate a healthcare agent. In addition to current decision-making capacity, the consultant must address broader issues of functional or management capacity when the patient’s ongoing capacity to manage personal care and health is at issue, as is relevant to the petition for guardianship. A comprehensive forensic geriatric psychiatry consultation will assist with the care of the patient.


2020 ◽  
Vol 86 (11) ◽  
pp. 1450-1455
Author(s):  
Emily B. Rivet ◽  
Candace E. Blades ◽  
Mary Hutson ◽  
Danielle Noreika

Advance Care Planning (ACP) includes anticipating future medical decisions and designating a medical decision maker in the event of losing the capacity to make one’s own medical decisions. Many advantages can be seen to doing ACP before a crisis as well as revisiting these discussions over time as circumstances change. This case presentation is of a 74-year-old woman with multiple medical problems who had ACP discussions in the context of proposed surgery for colon cancer. These conversations highlight the elements of high-quality ACP and the importance of learning what patients mean when they employ phrases commonly referenced in these conversations. The planned surgery was delayed by the COVID-19 pandemic but the discussions helped to guide decision-making when the patient became critically ill with COVID-19.


2018 ◽  
Vol 35 (9) ◽  
pp. 1227-1234 ◽  
Author(s):  
Hyejin Kim ◽  
Mi-Kyung Song

Background: Adults who lack decision-making capacity and a surrogate (“unbefriended” adults) are a vulnerable, voiceless population in health care. But little is known about this population, including how medical decisions are made for these individuals. Objective: This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature. Methods: Six electronic databases were searched using 4 keywords: “unbefriended,” “unrepresented patients,” “adult orphans,” and “incapacitated patients without surrogates.” After screening, the final sample included 10 data-based articles for synthesis. Results: Main findings include the following: (1) various terms were used to refer to adults who lack decision-making capacity and a surrogate; (2) the number of unbefriended adults was sizable and likely to grow; (3) approaches to medical decision-making for this population in health-care settings varied; and (4) professional guidelines and laws to address the issues related to this population were inconsistent. There have been no studies regarding the quality of medical decision-making and its outcomes for this population or societal impact. Conclusion: Extremely limited empirical data exist on unbefriended adults to develop strategies to improve how medical decisions are made for this population. There is an urgent need for research to examine the quality of medical decision-making and its outcomes for this vulnerable population.


2021 ◽  
pp. 147775092110698
Author(s):  
Alexia Zagouras ◽  
Elise Ellick ◽  
Mark Aulisio

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing on concepts from adolescent bioethics and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity.


2016 ◽  
Author(s):  
Zachary Strassburger

Youth in the foster care system often have no one person who isclearly authorized to make medical decisions for them. From acaseworker insisting upon a vaccine to a birth parent refusingpermission for psychotropic medication, this paper argues that thequestion of who makes these decisions matters for children’s rights.This paper reports the results of a survey of 132 stakeholdersrepresenting all U.S. states, 17 qualitative interviews, and a reviewof relevant laws and policies. The stakeholders and legal researchrevealed that in sixteen states, common practice disagreed with thewritten laws and policies about who should be making medical decisionsfor youth in the foster care system. Most often, foster parents aremaking medical decisions despite note having legal authority to do so,and birth parents are rarely making decisions even when they arelegally allowed to do so. This paper proposes that following federallaw about promoting family reunification, birth parents should be incharge of medical decision making for the first 12-24 months. Afterthat time, the foster parent, if one is available and has showncommitment to the child, should become the medical decision maker.Such a policy would promote birth parent involvement and familyreunification while acknowledging the need of young people in care fordecision makers who can make long-term commitments to their care.


2020 ◽  
pp. medethics-2020-106572
Author(s):  
Shih-Ning Then ◽  
Dominique E Martin

Where a person is unable to make medical decisions for themselves, law and practice allows others to make decisions on their behalf. This is common at the end of a person’s life where decision-making capacity is often lost. A further, and separate, decision that is often considered at the time of death (and often preceding death) is whether the person wanted to act as an organ or tissue donor. However, in some jurisdictions, the lawful decision-maker for the donation decision (the ‘donation decision-maker’) is different from the person who was granted decision-making authority for medical decisions during the person’s life. To date, little attention has been given in the literature to the ethical concerns and practical problems that arise where this shift in legal authority occurs. Such a change in decision-making authority is particularly problematic where premortem measures are suggested to maximise the chances of a successful organ donation. This paper examines this shift in decision-making authority and discusses the legal, ethical and practical implications of such frameworks.


Author(s):  
S.Yu. Zhuleva ◽  
A.V. Kroshilin ◽  
S.V. Kroshilina

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.


Author(s):  
Timothy E. Quill ◽  
Judith K. Schwarz

All seriously ill persons should complete advance directives specifying indications for limiting future provision of food and fluids. AD’s for SED specify When oral intake is to be limited and What limitations are to be imposed. Two categories include: (1) withholding all assisted oral intake from a person who has lost decision-making capacity, and previously indicated her wish to not receive any assisted feeding, and (2) Comfort Feeding Only (CFO) which involves providing as much or as little food and fluid as the patient seems to desire. CFO has three subcategories: (a) “Self-feeding only”—limiting oral intake to what the patient is able to self-administer. (b) Both “self-feeding” and “caregiver assisted-feeding” in whatever amount the patient enjoys. (c) “Minimum Comfort Feeding Only” is a modification for those who had expressed a desire to SED but lost decisional capacity before implementation, but now seem to desire food or fluid.


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