scholarly journals Transitions in decision-making authority at the end of life: a problem of law, ethics and practice in deceased donation

2020 ◽  
pp. medethics-2020-106572
Author(s):  
Shih-Ning Then ◽  
Dominique E Martin
Keyword(s):  
Decision Making ◽  
Organ Donation ◽  
End Of Life ◽  
Decision Maker ◽  
Legal Authority ◽  
Time Of Death ◽  
Medical Decisions ◽  
Ethical Concerns ◽  
Decision Making Capacity ◽  
Practical Implications

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.

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

2020 ◽  
pp. e186-e196
Author(s):  
Jonathan M. Marron ◽  
Kaitlin Kyi ◽  
Paul S. Appelbaum ◽  
Allison Magnuson
Keyword(s):  
Decision Making ◽  
Developmentally Disabled ◽  
Medical Decision ◽  
Decisional Capacity ◽  
Medical Decisions ◽  
Diminished Capacity ◽  
Decision Making Capacity ◽  
Minor Children ◽  
Oncology Practice ◽  
Do So

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.

scholarly journals The changing face of Capacity legislation in Ireland: algorithms for clinicians

2020 ◽  
pp. 1-5
Author(s):  
Valerie E Murphy ◽  
Gautam Gulati ◽  
Darius Whelan ◽  
Colum P Dunne ◽  
Brendan D Kelly
Keyword(s):  
Decision Making ◽  
Decision Making Capacity ◽  
The Law ◽  
Practical Implications

Capacity legislation in Ireland is evolving. The Assisted Decision-Making (Capacity) Act 2015 has been passed into law, but its main provisions are yet to be commenced. This paper compares the law and its practical implications currently and under the new legislation. Quick reference algorithms for frontline clinicians are proposed.

scholarly journals INFORMED CONSENT IN CLINICAL TRIALS FOR PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S28-S28 ◽  
Author(s):  
Joan G Carpenter
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Clinical Trials ◽  
Informed Consent ◽  
Nursing Homes ◽  
Decision Maker ◽  
Surrogate Decision Maker ◽  
Decision Making Capacity ◽  
Consent Document ◽  
Surrogate Decision

Abstract Informed consent is one of the most important processes during the implementation of a clinical trial; special attention must be given to meeting the needs of persons with dementia in nursing homes who have impaired decision making capacity. We overcame several challenges during enrollment and consent of potential participants in a pilot clinical trial including: (1) the consent document was designed for legally authorized representatives however some potential participants were capable of making their own decisions; (2) the written document was lengthy yet all seven pages were required by the IRB; (3) the required legal wording was difficult to understand and deterred potential participants; and (4) the primary mode of communication was via phone. We tailored assent and informed consent procedures to persons with dementia and their legally authorized representative/surrogate decision maker to avoid risking an incomplete trial and to improve generalizability of trial results to all persons with dementia.

Effect of race on the quantity and timing of end-of-life discussions in pediatric oncology

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 20004-20004
Author(s):  
J. N. Baker ◽  
P. S. Hinds ◽  
C. A. Zawistowski ◽  
S. Rai ◽  
Y. Ma ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Pediatric Oncology ◽  
Retrospective Chart Review ◽  
Time Of Death ◽  
Oncology Patients ◽  
Eligibility Criteria ◽  
Tertiary Referral Center ◽  
Chi Squared ◽  
Eol Care

20004 Background: Clinicians and parents report that end-of-life (EoL) care discussions and decision making are complex, difficult and affected by personal, family, and disease and treatment factors. The influence of race on EoL discussions and decision making has not been carefully examined in a large pediatric oncology study. The purpose of this study was to assess if race (white, black, Hispanic) influenced the quantity or timing of end-of-life care discussions and decisions. Methods: This abstract represents a retrospective chart review leading to the creation of an EoL database of pediatric oncology patients at St Jude Children’s Research Hospital who died during the time period of July 01, 2001 to February 28, 2005. Eligibility criteria were oncologic diagnosis, and patient age less than 21.99 years of age at the time of death. After strict application of the eligibility criteria, a total of 380 patients met study inclusion criteria. The effect of race on the quantity and timing of EoL discussions and decision making was then analyzed from the database. All extracted data were validated by a different team member as was the accuracy of all entered data. The association of race with other factors was assessed using regression analysis and chi-squared testing statistics. Results: None of the following differed by race: the total number of EoL discussions before an EoL decision was made (p=0.58); the total time from the first such discussion to a specific EoL decision (p=0.23–0.68), the total time from the first discussion to the patient’s death (p=0.105), or having a DNR in place at the time of death (p=0.55). Conclusions: In this cohort of patients from a tertiary referral center, race is not a significant factor on the quantity and timing of EoL discussions and decision making in pediatric oncology patients. [Table: see text] No significant financial relationships to disclose.

Assessing decision-making capacity at end of life

2014 ◽  
Vol 36 (4) ◽  
pp. 392-397 ◽  
Author(s):  
Elissa Kolva ◽  
Barry Rosenfeld ◽  
Robert Brescia ◽  
Christopher Comfort
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Making Capacity

What parents want from doctors in end-of-life decision-making for children

2013 ◽  
Vol 99 (3) ◽  
pp. 216-220 ◽  
Author(s):  
J Sullivan ◽  
P Monagle ◽  
L Gillam
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Maker ◽  
Semistructured Interview ◽  
End Of Life Decisions ◽  
Parental Autonomy ◽  
End Of Life Decision ◽  
Life Decision

ObjectiveEnd-of-life decision-making is difficult for everyone involved, as many studies have shown. Within this complexity, there has been little information on how parents see the role of doctors in end-of-life decision-making for children. This study aimed to examine parents’ views and experiences of end-of-life decision-making.DesignA qualitative method with a semistructured interview design was used.SettingParent participants were living in the community.ParticipantsTwenty-five bereaved parents.Main outcomesParents reported varying roles taken by doctors: being the provider of information without opinion; giving information and advice as to the decision that should be taken; and seemingly being the decision maker for the child. The majority of parents found their child's doctor enabled them to be the ultimate decision maker for their child, which was what they very clearly wanted to be, and consequently enabled them to exercise their parental autonomy. Parents found it problematic when doctors took over decision-making. A less frequently reported, yet significant role for doctors was to affirm decisions after they had been made by parents. Other important aspects of the doctor's role were to provide follow-up support and referral.ConclusionsUnderstanding the role that doctors take in end-of-life decisions, and the subsequent impact of that role from the perspective of parents can form the basis of better informed clinical practice.

Advance Care Planning for Persons with Intellectual Disabilities

GeroPsych ◽  
2018 ◽  
Vol 31 (2) ◽  
pp. 87-95 ◽  
Author(s):  
Monika T. Wicki
Keyword(s):  
Decision Making ◽  
Intellectual Disabilities ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
End Of Life Decisions ◽  
Percent Agreement ◽  
Decision Making Capacity ◽  
Advance Care ◽  
Life Decisions

Abstract. As people live longer, they become more likely to die from prolonged, incurable, chronic illnesses occurring more frequently in old age. This study explores the usefulness, quality, and reliability of documented advance care planning interviews to determine the decision-making capacity of persons with intellectual disabilities (IDs). A volunteer sample of 60 persons rated the capacity to consent to treatment of four persons deciding on two end-of-life decisions. Sensitivity, specificity, and percent agreement were calculated. Interrater reliability was assessed using Fleiss’ κ and Krippendorff’s α. A Yates’ corrected χ2 was used to analyze differences in ratings between groups of raters. The sensitivity value was 62%; the specificity value was 95%. The percent agreement for all participants was 70%, Fleiss’ κ was 0.396, and Krippendorff’s α was 0.395. Of the participants, 72 found documented advance care planning discussions useful for diagnosing the decision-making capacity of people with IDs. The documented interviews helped to identify those persons with IDs who had the decision-making capacity. Documented interviews on end-of-life decisions could make a valuable contribution to fostering their self-determination in end-of-life issues.

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