Lack Of Decision-making Capacity Research Articles

A Case-Based Discussion Supporting Ethics Education in Medical Schools

Background: Ethics education in medical schools lacks uniformity, yielding uncertainty when providers are faced with ethically complex patients. Without streamlined ethics training, providers are less confident in their ability to provide ethically appropriate care for all patients, particularly for those most ethically vulnerable. This case report seeks to elucidate ethical concerns when treating an ethically complex patient. Subsequently, the need for early ethics education is substantiated. The Case: A 58-year-old unhoused patient with no known medical history presented to the emergency department (ED) for evaluation of an infected foot wound. Imaging confirmed acute gas gangrene osteomyelitis. The patient refused the recommended below-the-knee amputation (BKA) but was amenable to intravenous antibiotic therapy. He was subsequently determined by psychiatry to lack decisional capacity and met the DSM-5 criteria for schizoaffective psychosis. Subsequently, the patient’s brother deferred decision-making to the patient, who he believed should make his own medical decisions. Following an ethics consultation, the brother’s decision, and by proxy the patient’s, was respected. Conclusion: In this case, the patient’s autonomy was prioritized, despite his high level of ethical vulnerability. Ethically conscious treatment was provided despite the implicit stigmatization of homelessness and psychiatric illness. However, an ethics consultation was necessary for this to occur. Ultimately, this paper should serve as a call to action for standardization and prioritization of ethics education during and beyond medical training.

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Ethics Considerations in Laws Restricting Incapacitated Patients' Access to ECT.

Electroconvulsive therapy (ECT) is a safe and effective treatment used for numerous psychiatric conditions. While many patients for whom ECT is indicated are able to give voluntary informed consent, some lack decision-making capacity (DMC), at least temporarily. Case reports from numerous countries involving ECT for patients who lack DMC indicate overall positive outcomes and high patient satisfaction with results comparable with those of consenting patients; some patients regain DMC with ECT. Laws and regulations pertaining to ECT vary widely around the world and across the United States. Many United States jurisdictions over-regulate ECT relative to other interventions with comparable risks and potential benefits. While laws restricting whether and under what circumstances patients who lack DMC may receive ECT likely are aimed at protecting incapacitated persons, such laws sometimes undermine important ethics obligations and should be re-evaluated.

A Standardized Approach to Treatment Over Objection in Patients Lacking Decision-Making Capacity Secondary to Neurologic Disease

Neurologic diseases, ranging from Alzheimer dementia to mass lesions in the frontal lobe, may impair decision making. When patients with neurologic disease lack decision-making capacity, but refuse treatment, should they be treated over their objection? To address this type of ethical dilemma in medical illness, Rubin and Prager developed a standardized 7-question approach: (1) How imminent is harm without intervention? (2) What is the likely severity of harm without intervention? (3) What are the risks of intervention? (4) What are the logistics of treating over objection? (5) What is the efficacy of the proposed intervention? (6) What is the likely emotional effect of a coerced intervention? (7) What is the patient's reason for refusal? We describe the application of the standardized Rubin/Prager approach as a checklist to the case of a 50-year-old woman with a large frontal lobe meningioma, who lacked capacity as a result of the meningioma, but refused surgery. This approach may be applied to similar ethical dilemmas of treatment over objection in patients lacking capacity as a result of neurologic disease.

Deep Ensemble Mobile Application for Recommendation of Fertilizer Based on Nutrient Deficiency in Rice Plants Using Transfer Learning Models

India is an agricultural country, and farming is the most common occupation among Indians. Rice is a vital crop in the agricultural industry. Productivity has been declining for almost a decade. There are several causes for this, including fragmented land holdings, Indian farmer illiteracy, a lack of decision-making capacity in selecting excellent seeds, manure, and irrigational infrastructure. One of the major reasons for rice crop failure is due to malnutrition. Rice, maybe in particular, lacking in nutrients such as potassium, nitrogen, and phosphorus. Nutrient deficiency detection in crops is necessary to plan further actions to enhance yield. Most studies have relied on the use of transfer learning models for agricultural uses. Ensembling of different transfer learning techniques has the ability to greatly increase the predictive model’s performance. Five transfer learning architectures InceptionV3, Xception, VGG16, Resnet50, and MobileNet are all taken into account, and their different ensemble models are used to perform deficiency detection in rice plants. The mobile application was created as a user-friendly interface to assist farmers. The accurate diagnosis of these nutritional deficiencies and recommendation of fertilizer could aid farmers in providing correct plant intervention.

Fluctuating Decision-Making in People with Mental Illness

Fluctuating Decision-Making in People with Mental Illness

Hospital Guardianship: A Quality Needs Assessment of "Unbefriended" Patients Who Lack Decisional Capacity.

The "unbefriended" patient does not demonstrate capacity to make their own medical decisions, does not have an advance directive, and lacks a surrogate decision maker. For these patients without a designated health care proxy, hospitals may need to petition for public guardianship, a notoriously arduous process with undefined impact on hospital resources. The objective of this study was to describe the characteristics, system needs, and financial impact of unrepresented inpatients in an academic, tertiary care, urban medical center. The Northwestern Memorial Hospital Quality and Patient Safety Committee approved a systematic needs assessment. Retrospective chart review was conducted for patients admitted from September 1, 2013 to August 31, 2019 for whom the hospital petitioned for a public guardian. From fiscal years 2014 to 2019, 156 patients were petitioned for public guardianship. The number of cases rose sequentially from 8 in 2014 to 44 in 2019. The 2 most common conditions that impaired capacity were neurocognitive disorders (56.4%) and psychotic disorders (17.9%). The psychiatry consultation service consulted 71.2% of cases vs 71.1%. There were 2347 medically unnecessary hospital days related to the pursuit of guardianship, and the associated costs to the health system were estimated to be more than $5.8 million. The number of unbefriended patients who lacked decisional capacity necessitating public guardianship dramatically escalated over 5 years. These patients had high rates of homelessness and psychiatric illness, consistent with previous research. Further investigation is needed to understand and address the needs of this vulnerable population.

Perceived Burdensomeness and the Wish for Hastened Death in Persons With Severe and Persistent Mental Illness.

Background: In several European countries, medical assistance in dying (MAID) is no longer confined to persons with a terminal prognosis but is also available to those suffering from persistent and unbearable mental illness. To date, scholarly discourse on MAID in this population has been dominated by issues such as decision-making capacity, uncertainty as to when a disease is incurable, stigmatization, isolation, and loneliness. However, the issue of perceived burdensomeness has received little attention.Objective: The study explores the possible impact of perceived burdensomeness on requests for MAID among persons with severe and persistent mental illness (SPMI).Method: Using the method of ethical argumentation, we discuss the issue of access to MAID for persons with SPMI and perceived burdensomeness.Conclusion: Perceived burdensomeness may be a contributing factor in the wish for hastened death among persons with SPMI. MAID is ethically unsupportable if SPMI causes the individual to make an unrealistic assessment of burdensomeness, indicating a lack of decision-making capacity in the context of that request. However, the possibility that some individuals with SPMI may perceive burdensomeness does not mean that they should be routinely excluded from MAID. For SPMI patients with intact decision-making capacity who feel their life is not worth living, perceived burdensomeness as a component of this intolerable suffering is not a sufficient reason to deny access to MAID.

Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide

BackgroundPersonalized ENCALS survival prediction model reliably estimates the personalized prognosis of patients with amyotrophic lateral sclerosis. Concerns were raised on discussing personalized prognosis without causing anxiety and destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families.MethodsA multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist, and spiritual counsellor).ResultsA) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity.Recommendations for discussing the prognosis include the following: discuss prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Investigate needs and preferences of the patients and their families for prognostic disclosure, regardless of cultural background. If the patient does not want to know their prognosis, with patient permission discuss the prognosis with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss the prognosis. Tailor prognostic disclosure step by step, discuss it in terms of time range, and emphasize uncertainty of individual survival time.ConclusionThis communication guide supports physicians in tailoring discussion of personalized prognosis to the individual needs and preferences of people with ALS and their families.

APA Board Approves New Codes for Suicidal Behavior and Nonsuicidal Self-Injury, Discusses Major New Initiatives

APA Board Approves New Codes for Suicidal Behavior and Nonsuicidal Self-Injury, Discusses Major New Initiatives

Overcoming Obstacles to Shared Mental Health Decision Making.

Shared decision making (SDM) is difficult to implement in mental health practice, but it remains an ethical ideal for motivating therapeutic capacity in patient-clinician relationships; this discrepancy warrants attention from clinical and ethical perspectives. This article explores what some clinicians see as obstacles to even attempting SDM with patients with psychiatric disabilities. In particular, this article identifies 4 such obstacles: a patient's lack of decision-making capacity, a patient's poor insight, a health care professional's therapeutic pessimism or personal dislike, and a patient's or health care professional's conflicting recovery orientations or goals of care. This article argues that each obstacle could be overcome in many cases and that health care professionals, patients, and their caregivers should remain dedicated to attempting SDM in mental health practice.

Surrogate decision making for unrepresented patients: Proposing a harm reduction interpretation of the best interest standard

Unrepresented patients are individuals who lack decision makingcapacity and have no family or friends to make medical decisions for them. This population is growing in number in the United States, particularly within emergency and intensive care settings. While some bioethical discussion has taken place in response to the question of who ought to make decisions for these patients, the issue of how surrogate medical decisions ought to be made for this population remains unexplored. In this paper, we argue that standard applications of surrogate decision making principles in health care are not well suited to many unrepresented patients with long-term mental health diagnosis. We argue that when applied to this population, the substituted judgment standard, designed to preserve patient preferences and values, may lead to the exclusion of their preferences. We argue further that the application of the best interest standard runs the risk of leading to harmful cases of overtreatment or undertreatment. We offer an alternative interpretation of the best interest principle that is better able to promote the well-being of unrepresented patients, especially for those who lack capacity because of mental disorders. This alternative is based on the practices and principles of harm reduction and includes three components: emphasis on considering the expressed preferences of unrepresented patients, a focus on reducing harm as well as the delivery of clinical benefits, and a recognition of the importance of promoting trust.

Use of the EFQM excellence model to improve hospital pharmacy performance.

Quality management systems are widely used to improve the quality and efficiency of healthcare services. However, evidence regarding the value of the European Foundation for Quality Management (EFQM) model in improving the performance of hospital departments is lacking. To describe the value of the EFQM model as a quality framework for improving the performance of a hospital pharmacy department (PD). A case study describing the development of the Enablers' criteria of the model and the results achieved. PD in a tertiary-care teaching hospital of the Madrid Public Health Service (Spain). Four self-assessments were conducted using the questionnaire "Perfil" during the period 2008-2017. A quality improvement plan was developed on the basis of the results of each self-assessment. A balanced scorecard was used to track progress. Improvement in quality management was externally evaluated by the Spanish Management Excellence Club in 2010, 2013, and 2017. Change in the scores obtained in the external assessments, the quality improvement initiatives implemented for each Enabler's criteria, and the results of key performance indicators. The EFQM was a useful framework for self-assessment and a good system for identifying improvement initiatives. The model progressively improved the services provided for patients, the safety and efficiency of pharmacotherapy, productivity of the PD, and customer and staff satisfaction. The external assessment scores exceeded 300 points in 2010, 400 points in 2013, and 500 points in 2017. Scores for all of the criteria progressively improved, particularly in 'people'. The EFQM was a practical tool for improvement of PD performance, especially in areas such as strategic planning, people management, and innovation. The main difficulties were the lack of decision-making capacity in relevant areas and benchmarking with other PDs.

Difficulty in Dying on LVAD: A Preliminary Analysis of Factors Associated with Time to LVAD Withdrawal

Purpose When left ventricular assist device (LVAD) therapy no longer fullfills a patient's desired quality of life, the patient or their surrogate may request withdrawal. However, the details of LVAD withdrawal have not been previously studied. The aim of this study is to describe the factors associated with LVAD withdrawal. Methods Among newly implanted LVADs from 2010 until July 2018 in a single institution, those who underwent withdrawal were included. We divided this cohort into 2 groups based on whether patients initiated the decision of withdrawal (PT+) or patients could not participate due to lack of decision-making capacity (PT-). In PT+, we calculated the days between the patients’ request of withdrawal and deactivation (WD_PT+). In PT-, we calculated the days between the time when patients lost capacity and deactivation (WD_PT-). Multivariate linear regression analyses were done to predict WD_PT-. Place of withdrawal, palliative care involvement, and other clinical factors were also analyzed. Results A total of 61 patients (14 in PT+, 47 in PT-) underwent LVAD withdrawal. Mean age at death was 65.4 ±10.1years and 85.2% were male. Median survival was 170 days. Palliative care was involved in the majority of LVAD withdrawals. Most LVAD withdrawals occurred in the ICU. The median WD_PT was 5.5 days (IQR 39.1), and was shorter in the ICU (n=9, 1 day, IQR 7) than non-ICU settings (n=5, 46 days, IQR 95.5). The median WD_PT- was 5.5 days (IQR 9.3), and was shorter in the ICU (n=42, 4 days, IQR 10) than in non-ICU settings (n=4, 13 days, IQR 32.3). A multivariate analysis showed that male and ICU setting were significantly associated with WD_PT- (p=0.025 for male, p=0.005 for ICU setting) Conclusion The majority of LVAD withdrawals were done in the ICU. Patients’ request of withdrawal was respected sooner and surrogates’ decisions for withdrawal occurred sooner in the ICU. Time to surrogates’ decision for withdrawal was shorter in male patients. Palliative care was involved in the majority of withdrawals.

Evaluation of the CPR video decision aid with patients with end stage renal disease

BackgroundPeople with end stage renal disease (ESRD) face important health-related decisions concerning end-of-life care and the use of life-support technologies. While people often want to be involved in making decisions about their health, there are many challenges. People with advanced illness may have limited or wavering ability to participate fully in decision-making conversations – or lack decisional capacity for making decisions. Additionally, they may have a limited understanding of CPR and tend to receive inconsistent information on the process and outcome of CPR. Unfortunately, these discussions are often avoided. Shared decision-making approaches are an approach to overcoming these challenges. The objectives of this research was to design, test, and analyze a novel CPR video decision aid (VDA) with nephrology patients and their families in a clinical setting.MethodsThe Interprofessional Shared Decision-making Model was used as a framework to guide the research. A prospective quasi-experimental design included pre/posttest measures of knowledge and confidence in decision-making, and posttest only measure of uncertainty about the decision.ResultsParticipant knowledge about CPR increased from a mean score of 4.8/9 (standard deviation [SD] = 1.65) before viewing the video to 7.5/9 (SD = 1.40) (p = 0.000) after viewing the video. Decisional self-efficacy improved slightly from 84% pre intervention (SD 17.04, range 20–100) to 86% after the intervention (SD 14.13, range 39–100) (p = 0.005) for patient participants. Before the intervention, most patients (43/49; 86%) had an order to have CPR in the physician orders and very few (7/49; 14%) had an order not to have CPR. Immediately after viewing the CPR-VDA and completing the values clarification worksheet, fewer 28/49 (57%) chose to have CPR, 13 (27%) chose not to have CPR and 8 (16%) were unsure.ConclusionsThe CPR-VDA was feasible and acceptable to patients with ESRD, their families and the healthcare team. The CPR-VDA positively affected decision-making: improving patient and family knowledge about CPR, clarity of values, patients’ decisional self-efficacy, the congruence between documented physician’s orders and patient choice, quality of communication about CPR, while reducing decisional conflict (uncertainty) amongst patients, families, and physicians.

Barriers to End-of-Life Care for LGBT Persons in the Absence of Legal Marriage or Adequate Legal Documentation.

End-of-life care has attracted increased attention in recent years due to increases in both the number and mean age of the world's population; however, the experiences of LGBT persons during end-of-life care remain understudied. Given the health disparities and barriers to care experienced throughout the life course of LGBT persons, the frequent involvement of legal spouses in end-of-life care, and the recency of marriage equality, it can be surmised that LGBT persons might experience significantly different barriers to their desired end-of-life care compared to their heterosexual and cisgender counterparts. This article aims to synthesize what is known about these barriers, particularly in the absence of legal marriage or protective legal documentation. Of two hundred and twelve articles reviewed, twenty-three were included for analysis. Common barriers that emerged were discriminatory laws (e.g., prohibitions against same-sex marriage) and policies, lack of decision-making capacity, lack of knowledge regarding patient wishes, lack of visitation rights, challenges from biological next of kin, and discrimination and psychological distress. Recommendations for future research are provided based on gaps that were identified. These include increased research on transgender persons and bisexual persons, and on providers of end-of-life care. In addition, the recommendations take into account that important legislative and policy changes occurred after the period in which the studies reviewed here were published. The impact of those changes cannot be reported in this study and should be determined by future studies. This synthesis provides the contextual understanding necessary for research and improvement in this vastly understudied area.

Medical Decision-Making for Adults Who Lack Decision-Making Capacity and a Surrogate: State of the Science.

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. This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature. 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. 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. 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.

The Medical Incapacity Hold: A Policy on the Involuntary Medical Hospitalization of Patients Who Lack Decisional Capacity

Medically hospitalized patients who lack decisional capacity may request, demand, or attempt to leave the hospital despite grave risk to themselves. The treating physician in this scenario must determine how to safeguard such patients, including whether to attempt to keep them in the hospital. However, in many jurisdictions, there are no laws that address this matter directly. In this absence, psychiatrists are often called upon to issue an involuntary psychiatric hold (civil commitment) to keep the patient from leaving. Yet, civil commitment statutes were not intended for, and generally do not address, the needs of the medically ill patient without psychiatric illness. Civil commitment is permitted for patients who pose a danger to themselves or others, or who are gravely disabled, specifically as the result of a mental illness, and allows the transport of such individuals to facilities for psychiatric evaluation. It does not permit detention for medical illnesses nor the involuntary administration of medical treatments. Therefore, the establishment of hospital policies and procedures may be the most appropriate means of detaining medically hospitalized patients who lack capacity to understand the risks of leaving the hospital, in addition to mitigating the potential tort risk faced by the physician for acting in a manner that protects the patient. The purpose of this article is to identify the array of clinical and medical-legal concerns in these scenarios, and to describe the development of a "medical incapacity hold" policy as a means of addressing this unresolved issue.

Guardianship and the Representative Payee Program

Research suggests that 0.3 percent of all adults have been appointed a legal guardian. While the requirements for being placed into guardianship can vary from state to state, a lack of decision-making capacity is a precondition. As a result, one would expect Social Security beneficiaries who have a guardian to also have their guardian act as a representative payee. Yet little is known about the relationship between guardianship and the Representative Payee Program. In response to a request from the Social Security Administration, this report uses the Survey of Income and Program Participation (SIPP) linked to the Social Security Master Beneficiary File and the Supplemental Security Record to investigate three questions: 1) how many beneficiaries with representative payees have guardians?; 2) how many beneficiaries have their guardian as their payee?; and 3) what are the characteristics of those with both a payee and a guardian. Because the SIPP does not include individuals residing in nursing homes, the project also examines data from the Health and Retirement Study, which does include these individuals. This paper found that: - Guardianship is more common among those in the Representative Payee Program than in the population writ large, with between 5 percent to 11 percent of those with a representative payee also having a guardian, depending on the program and dataset considered. - For those with both a representative payee and a guardian, the guardian serves as the payee the vast majority of the time. - Individuals with a representative payee are more likely to have a guardian if they are older, white, and are not living with their representative payee. The policy implications of this paper are: - While guardianship could lessen the need for representative payees since it provides a protective legal arrangement, few individuals with a representative payee have one. - As more representative payees are needed with the aging of the Baby Boomers, pre-existing guardians seem unlikely to fill a large portion of the need.

AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults.

In this position statement, we define unbefriended older adults as patients who: (1) lack decisional capacity to provide informed consent to the medical treatment at hand; (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so; and (3) lack family, friends or a legally authorized surrogate to assist in the medical decision-making process. Given the vulnerable nature of this population, clinicians, health care teams, ethics committees and other stakeholders working with unbefriended older adults must be diligent when formulating treatment decisions on their behalf. The process of arriving at a treatment decision for an unbefriended older adult should be conducted according to standards of procedural fairness and include capacity assessment, a search for potentially unidentified surrogate decision makers (including non-traditional surrogates) and a team-based effort to ascertain the unbefriended older adult's preferences by synthesizing all available evidence. A concerted national effort is needed to help reduce the significant state-to-state variability in legal approaches to unbefriended patients. Proactive efforts are also needed to identify older adults, including "adult orphans," at risk for becoming unbefriended and to develop alternative approaches to medical decision making for unbefriended older adults.This document updates the 1996 AGS position statement on unbefriended older adults.