Autonomy-based criticisms of the patient preference predictor

The patient preference predictor (PPP) is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them with the treatments they would have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice.

They Have the Ability to Say Yes or No: Providers' Perspectives on Veterans' Service Refusal as a Cause of Readmissions

sService refusal, where patients actively refuse clinicians’ recommendations for additional services needed to achieve safe and full recovery after discharge, is a key but often overlooked cause of readmissions. There is a dearth of literature on the extent of service refusal and providers’ (e.g. clinicians, nurses, social workers) observations regarding how to deal with these situations. As part of a larger, 10 VA site organizational case study of readmission, semi-structured interviews exploring causes of readmission were conducted with 21-41 staff members at each site (n=314). 41 providers identified Veteran service refusal and decision-making as causes of readmission. Providers acknowledged the need to honor patient autonomy/self-determination in decisions while at the same time worrying about potential adverse outcomes. Incongruence between Veterans’ and providers’ perceptions (especially for capacity for self-care), goals, and discharge plans was also cited as a factor in service refusal. Frustration was also raised about initial acceptance of service followed by refusal at time of service delivery. Providers also felt readmissions increased even further when combined with lack of or inadequate caregiving arrangements/family support, lack of cognitive capacity, homelessness, or home care affordability. Findings point to the need for interventions to evaluate congruence between provider and patient assessment of self-care capabilities and provide more in-depth goal setting and motivational interviewing techniques to help patients reach more realistic post-discharge care goals.

Informed consent in pragmatic trials: results from a survey of trials published 2014–2019

ObjectivesTo describe reporting of informed consent in pragmatic trials, justifications for waivers of consent and reporting of alternative approaches to standard written consent. To identify factors associated with (1) not reporting and (2) not obtaining consent.MethodsSurvey of primary trial reports, published 2014–2019, identified using an electronic search filter for pragmatic trials implemented in MEDLINE, and registered in ClinicalTrials.gov.ResultsAmong 1988 trials, 132 (6.6%) did not include a statement about participant consent, 1691 (85.0%) reported consent had been obtained, 139 (7.0%) reported a waiver and 26 (1.3%) reported consent for one aspect (eg, data collection) but a waiver for another (eg, intervention). Of the 165 trials reporting a waiver, 76 (46.1%) provided a justification. Few (53, 2.9%) explicitly reported use of alternative approaches to consent. In multivariable logistic regression analyses, lower journal impact factor (p=0.001) and cluster randomisation (p<0.0001) were significantly associated with not reporting on consent, while trial recency, cluster randomisation, higher-income country settings, health services research and explicit labelling as pragmatic were significantly associated with not obtaining consent (all p<0.0001).DiscussionNot obtaining consent seems to be increasing and is associated with the use of cluster randomisation and pragmatic aims, but neither cluster randomisation nor pragmatism are currently accepted justifications for waivers of consent. Rather than considering either standard written informed consent or waivers of consent, researchers and research ethics committees could consider alternative consent approaches that may facilitate the conduct of pragmatic trials while preserving patient autonomy and the public’s trust in research.

A Blockchain-Based Intelligent Machine Learning System for Smart Health Care

Blockchain and Machine Learning gives the best solutions together in performing various tasks in the Smart Health care system. With these two new emerging technologies, that have materialized in the last decade. In this paper, we proposed secure, transparent and intelligent methods in the Internate of medical things industry using Machine learning models and blockchain technology to enhance security level and train our models to improve diagnostic, prevention, treatment of the patient, patient rights, patient autonomy and equality in the health care system.

Análisis de los programas para la presencia de familiares en la parada cardiorrespiratoria extrahospitalaria en paciente adulto

Objetivo: Explorar los programas orientados a la participación de familiares en situaciones de PCR en adultos en el medio extrahospitalario.Método: Revisión narrativa de la literatura científica, en bases de datos primarias (Scielo, PubMed, Cuiden y Cochrane Plus y CINAHL), con empleo de lenguaje estructurado DeCS y MeSH, de 2005 a 2020, en español e inglés. Se obtienen 23 estudios.Resultados: Los estudios muestran que el duelo de los familiares de una parada cardiorrespiratoria en el medio extrahospitalario es menos traumática si se les permite estar presentes. Permanecer junto a la víctima debe asegurarse salvo que el profesional considere que es perjudicial. Las ventajas de la presencia de familiares son tanto para el familiar como para el equipo asistencial. A pesar de existir una necesidad social y ética de acuerdo con el principio de autonomía del paciente para la implementación de estos programas apenas existen y esto suele ser debido a las resistencias generadas por los propios profesionales o los gestores.Conclusiones: Las principales sociedades científicas internacionales recomiendan en caso de PCR en el adulto en el medio extrahospitalario, la implantación de programas para la presencia de familiares, lo que hace que se convierta en una necesidad. La literatura científica demuestra más ventajas que inconvenientes, fundamentalmente en cuanto a un mejor duelo en familiares y mayor satisfacción y menor posibilidad de demandas jurídicas en los sanitarios, promoción de la humanización de los cuidados que se traduciría en un gasto asistencial menor en prevalencia de duelo patológico. Objective: Explore programs aimed at the participation of family members in situations of CRP in adults in the out-of-hospital setting.Method: Narrative review of the scientific literature, in primary databases (Scielo, PubMed, Cuiden and Cochrane Plus and CINAHL), using DeCS and MeSH structured language, from 2005 to 2020, in Spanish and English. 23 studies are obtained.Results: Studies show that mourning for family members of a cardiorespiratory arrest in the out-of-hospital setting is less traumatic if they are allowed to be present. Staying with the victim must be ensured unless the professional considers that it is harmful. The advantages of the presence of family members are as much for the family member as for the healthcare team. Despite the existence of a social and ethical need in accordance with the principle of patient autonomy for the implementation of these programs, they hardly exist and this is usually due to the resistance generated by the professionals or managers themselves.Conclusions: In the case of cardiorespiratory arrest in adults in the out-of-hospital setting, the main international scientific societies recommend the implementation of programs for the presence of family members, which makes it a necessity. The scientific literature demonstrates more advantages than disadvantages, fundamentally in terms of better grief in family members and greater satisfaction and less possibility of legal claims in health professionals, promoting the humanization of care that would translate into lower healthcare costs in the prevalence of grief pathological. Objetivo: explorar programas voltados à participação de familiares em situação de PCR em adultos no ambiente extra-hospitalar.Método: revisão narrativa da literatura científica, em bases de dados primárias (Scielo, PubMed, Cuiden e Cochrane Plus e CINAHL), utilizando a linguagem estruturada DeCS e MeSH, de 2005 a 2020, em espanhol e inglês. 23 estudos foram obtidos.Resultados: estudos mostram que o luto de familiares por parada cardiorrespiratória em ambiente extra-hospitalar é menos traumático se eles puderem estar presentes. A permanência com a vítima deve ser assegurada, a menos que o profissional considere prejudicial. As vantagens da presença de familiares são tanto para o familiar quanto para a equipe de saúde. Apesar da existência de uma necessidade social e ética de acordo com o princípio da autonomia do paciente para a implantação desses programas, eles quase não existem e isso geralmente se deve às resistências geradas pelos próprios profissionais ou pelos gestores.Conclusões: as principais sociedades científicas internacionais recomendam, no caso da PCR em adultos em ambiente extra-hospitalar, a implantação de programas de presença de familiares, o que a torna uma necessidade. A literatura científica mostra mais vantagens do que desvantagens, fundamentalmente em termos de melhor luto nos familiares e maior satisfação e menor possibilidade de demandas judiciais nos trabalhadores da saúde, promovendo a humanização da assistência que se traduziria em menores gastos com saúde nas prevalências do luto patológico.

“When the Music’s Over” then “Dancing with a Partner Will Help You Find the Beat”

Responses to brain injury sit in the intersection between neuroscience and an ethic of care, and require sensitive and dynamic indicators of how an individual with brain injury can learn how to live in the context of a changing environment and multiple timescales. Therapeutic relationships and rhythms underpinning such a dynamic approach are currently obscured by existing models of brain function. Something older is required and we put forward narrative types articulating outcomes of brain injury over various periods and starting points in time. Such storytelling challenges a static neuropsychological paradigm and moves from an ethics that focuses on patient autonomy into one that is reflective of the cognitive supports and therapeutic relationships that underpin ways that the patient can re-find the beat that proves the music is not over.

The Privilege of Information—An Examination of the Defence of Therapeutic Privilege and its Implications for Pregnant Women

Though apparently in existence across common law countries, the defence of ‘therapeutic privilege’ receives scant judicial analysis in case law. The extent of its reach is unclear and its underpinning justification is shaky. Often it forms a throwaway remark or poorly explored caveat when the duty of a physician to disclose information is being examined, rather than receiving any detailed judicial scrutiny in its own right. Furthermore, despite references to it in case law, it is questionable if it has ever successfully been invoked as a defence in either England and Wales or Ireland. This piece examines this lack of clarity and the often-vague references to the existence of therapeutic privilege in both case law and professional guidelines, followed by a consideration of why the defence may be particularly problematic and unjustified in the context of childbirth and the immediate postpartum period. Considering the dangers of therapeutic privilege in pregnancy presents a timely opportunity to examine the issues with the use of the defence in all other healthcare contexts, focusing particularly on its impact on individual patient autonomy. Finally, this piece concludes by contending that therapeutic privilege ought to be abolished, if it truly exists at all.