Advance Care Planning and Surrogate Decision-Making (DRAFT)

2018 ◽  
Author(s):  
Robert C. Macauley
Keyword(s):  
Decision Making ◽  
Decision Maker ◽  
Patient Autonomy ◽  
Best Interests ◽  
Evidence Based ◽  
Surrogate Decision Maker ◽  
Substituted Judgment ◽  
Decision Making Capacity ◽  
Advance Care ◽  
Surrogate Decision

Adult patients are presumed to possess decision-making capacity, but when they are unable to make their own decisions—which is especially frequent in the context of serious illness—ideally a surrogate decision-maker will be able to determine what the patient would have wanted (i.e., substituted judgment). Only when this is not possible is it necessary to fall back on what seems to be in the patient’s best interests. To foster patient autonomy, goals and values should be identified and documented in advance, such as in an advance directive, as well as a surrogate decision-maker named. This helps guide the medical team in critical and often uncertain times, given the challenges in accurate prognostication (which are lessening with the advent of evidence-based tools).

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.

scholarly journals POLST Signature Requirements: Responding With Compassion While Ensuring Informed Consent

2020 ◽  
pp. 104990912095308
Author(s):  
Robert Macauley ◽  
Susan Tolle
Keyword(s):  
Health Care ◽  
Informed Consent ◽  
Decision Maker ◽  
Health Care Professional ◽  
Patient Autonomy ◽  
Necessary Condition ◽  
Surrogate Decision Maker ◽  
Decisional Capacity ◽  
Spiritual Distress ◽  
Surrogate Decision

The majority of states require the signature of a surrogate decision maker on a POLST form for a patient who lacks decisional capacity. While commendable in its intention to ensure informed consent, in some cases this may lead the surrogate to feel that they are signing their loved one’s “death warrant,” adding to their emotional and spiritual distress. In this paper we argue that such a signature should be recommended rather than required, as it is neither a sufficient nor necessary condition of informed consent. Additional steps—such as requiring the attestation and documentation of the signing health care professional that verbal consent was fully informed and voluntary—can achieve the ultimate goal of respecting patient autonomy without adding to the surrogate’s burden.

scholarly journals Feasibility and Acceptability of an mHealth ACP Tool in Primary Care

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 516-517
Author(s):  
Desh Mohan ◽  
Katelin Cherry ◽  
Tatiana Fofanova ◽  
Taylor Huffman ◽  
Glenn Davis ◽  
...  
Keyword(s):  
Primary Care ◽  
Decision Maker ◽  
Advance Care Planning ◽  
Life Support ◽  
Medical Decision ◽  
Care Planning ◽  
Surrogate Decision Maker ◽  
Advance Care ◽  
Surrogate Decision ◽  
Planning Concepts

Abstract With only 7% of Medicare beneficiaries having completed Advance Care Planning with their physicians, engagement in Advance Care Planning in the clinical setting has been historically low. This study investigated the feasibility of introducing the Koda Health Advance Care Planning software platform in the primary care setting, and whether patients would engage in advance care planning through this medium. The Koda platform is a video-driven, web application that guides patients through advance care planning concepts, including values and quality of life exploration, surrogate decision maker selection, life-support treatments, and advance directive completion. The study was completed over a six-month period in two primary care clinics in the Houston, Texas area. Inclusion criteria were age 55 or older, English-speaking, and capacity for medical decision making. 339 patients met eligibility criteria and had a median age of 73 (range 59-89). All participants were offered the platform, and 262 (77%) created an account and began planning for their care. Of the patients that created an account, 87% completed all ACP steps on the platform and 72% identified a surrogate decision maker. The median time spent on the platform was 18 minutes. The Koda platform appears to be a useful tool for patients and providers to improve engagement in advance care planning and improve surrogate decision maker identification. Further research is needed to understand whether the Koda platform aids in providing goal-concordant care.

scholarly journals Capacity issues at the front door

2019 ◽  
Vol 80 (9) ◽  
pp. 513-516
Author(s):  
Peter Lepping
Keyword(s):  
Decision Making ◽  
Cognitive Impairment ◽  
Decision Maker ◽  
Acute Infection ◽  
Mental Capacity ◽  
Best Interests ◽  
Decision Making Capacity ◽  
Mental Capacity Act 2005 ◽  
Mental Capacity Act ◽  
Psychiatric Problems

Decision-making capacity is often overestimated by clinicians. An average of one third of patients lack capacity to make complex decisions and clinicians should be alert to such a possibility. Cognitive impairment, acute infection, intoxication and other common medical and psychiatric problems can impair patients' capacity. The Mental Capacity Act 2005 has to be applied when treating patients who lack capacity. The main decision maker for a proposed treatment or investigation is responsible for assessing capacity. However, all clinicians have to consider and assess capacity, and act in a patient's best interests if he/she lacks capacity.

Autism and Advance Directives: Determining Capability and the Use of Health-Care Tools to Aid in Effective Communication and Decision-Making

2019 ◽  
Vol 37 (5) ◽  
pp. 354-363
Author(s):  
Valerie Satkoske ◽  
Joann M. Migyanka ◽  
David Kappel
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Decision Maker ◽  
Advance Directives ◽  
Health Care Providers ◽  
Surrogate Decision Maker ◽  
Care Providers ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision

With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.

A new kind of paternalism in surrogate decision-making? The case of Barnsley Hospitals NHS Foundation Trust v MSP

2020 ◽  
pp. medethics-2020-106797
Author(s):  
Scott Y H Kim ◽  
Alexander Ruck Keene
Keyword(s):  
Decision Making ◽  
Best Interests ◽  
Medical Decision ◽  
Negative Consequences ◽  
Substituted Judgment ◽  
Mental Capacity Act 2005 ◽  
Values And Beliefs ◽  
Life Sustaining Treatment ◽  
Surrogate Decision ◽  
Mental Capacity Act

The modern legal and ethical movement against traditional welfare paternalism in medical decision-making extends to how decisions are made for patients lacking decisional capacity, prioritising surrogates’ judgment about what patients would have decided over even their best interests. In England and Wales, the Mental Capacity Act 2005 follows this trend of prioritising the patient’s prior wishes, values and beliefs but the dominant interpretation in life-sustaining treatment cases does so by in effect calling those values the ‘best interests’ of the patient and focusing nearly exclusively on the ‘subjective’ viewpoint of the patient. In this article, we examine the recent Court of Protection judgment in Barnsley Hospitals NHS Foundation Trust v MSP [2020] EWCOP 26, which adhered closely to this approach, to suggest that it could have unexpected negative consequences. These include insufficient information gathering about and attention to patients’ objective medical interests, inadequacy of the evidentiary standard used for the substituted decision-making and, in some cases, even prioritising a surrogate’s current substituted judgment over the potential for an actual judgment by the patient.

scholarly journals Older Adults More Likely to Discuss Advance Care Plans With an Attorney Than With a Physician

2017 ◽  
Vol 3 ◽  
pp. 233372141774197 ◽  
Author(s):  
Mercedes Bern-Klug ◽  
Elizabeth A. Byram
Keyword(s):  
Older Adults ◽  
Health Care ◽  
Decision Maker ◽  
Online Survey ◽  
Medical Decision ◽  
Surrogate Decision Maker ◽  
Future Health ◽  
Care Plans ◽  
Advance Care ◽  
Surrogate Decision

Adults are encouraged to discuss their end-of-life health care preferences so that their wishes will be known and hopefully honored. The purpose of this study was to determine with whom older adults had communicated their future health care wishes and the extent to which respondents themselves were serving as a surrogate decision maker. Results from the cross-sectional online survey with 294 persons aged 50 and older reveal that among the married, over 80% had a discussion with their spouse and among those with an adult child, close to two thirds (64%) had. Over a third had discussed preferences with an attorney and 23% with a physician. Close to half were currently serving as a surrogate decision maker or had been asked to and had signed papers to formalize their role. 18% did not think that they were a surrogate but were not sure. More education is needed to emphasize the importance of advance care planning with a medical professional, especially for patients with advanced chronic illness. More education and research about the role of surrogate medical decision makers is called for.

scholarly journals Determining medical decision-making capacity in brain tumor patients: why and how?

2020 ◽  
Vol 7 (6) ◽  
pp. 599-612 ◽  
Author(s):  
Andrea Pace ◽  
Johan A F Koekkoek ◽  
Martin J van den Bent ◽  
Helen J Bulbeck ◽  
Jane Fleming ◽  
...  
Keyword(s):  
Decision Making ◽  
Brain Tumor ◽  
Medical Decision Making ◽  
Clinical Decision Making ◽  
Best Interests ◽  
Medical Decision ◽  
Surrogate Decision Making ◽  
Tumor Patients ◽  
Decision Making Capacity ◽  
Surrogate Decision

Abstract Background Brain tumor patients are at high risk of impaired medical decision-making capacity (MDC), which can be ethically challenging because it limits their ability to give informed consent to medical treatments or participation in research. The European Association of Neuro-Oncology Palliative Care Multidisciplinary Task Force performed a systematic review to identify relevant evidence with respect to MDC that could be used to give recommendations on how to cope with reduced MDC in brain tumor patients. Methods A literature search in several electronic databases was conducted up to September 2019, including studies with brain tumor and other neurological patients. Information related to the following topics was extracted: tools to measure MDC, consent to treatment or research, predictive patient- and treatment-related factors, surrogate decision making, and interventions to improve MDC. Results A total of 138 articles were deemed eligible. Several structured capacity-assessment instruments are available to aid clinical decision making. These instruments revealed a high incidence of impaired MDC both in brain tumors and other neurological diseases for treatment- and research-related decisions. Incapacity appeared to be mostly determined by the level of cognitive impairment. Surrogate decision making should be considered in case a patient lacks capacity, ensuring that the patient’s “best interests” and wishes are guaranteed. Several methods are available that may help to enhance patients’ consent capacity. Conclusions Clinical recommendations on how to detect and manage reduced MDC in brain tumor patients were formulated, reflecting among others the timing of MDC assessments, methods to enhance patients’ consent capacity, and alternative procedures, including surrogate consent.

scholarly journals Substituted decision making and the dispositional choice account

2018 ◽  
Vol 44 (10) ◽  
pp. 703.1-709 ◽  
Author(s):  
Anna-Karin Margareta Andersson ◽  
Kjell Arne Johansson
Keyword(s):  
Decision Making ◽  
Best Interests ◽  
Surrogate Decision Making ◽  
Substituted Judgment ◽  
Legal Context ◽  
Surrogate Decision ◽  
Best Interests Standard ◽  
Unconscious Patients ◽  
Substituted Judgment Standard

There are two main ways of understanding the function of surrogate decision making in a legal context: the Best Interests Standard and the Substituted Judgment Standard. First, we will argue that the Best Interests Standard is difficult to apply to unconscious patients. Application is difficult regardless of whether they have ever been conscious. Second, we will argue that if we accept the least problematic explanation of how unconscious patients can have interests, we are also obliged to accept that the Substituted Judgment Standard can be coherently applied to patients who have never been conscious at the same extent as the Best Interests Standard. We then argue that acknowledging this result is important in order to show patients respect.

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