Determining medical decision-making capacity in brain tumor patients: why and how?
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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.
SUBMITTER: Pace A
PROVIDER: S-EPMC7716185 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivePatients with malignant glioma (MG) must make ongoing medical treatment decisions concerning a progressive disease that erodes cognition. We prospectively assessed medical decision-making capacity (MDC) in patients with MG using a standardized psychometric instrument.MethodsParticipants were 22 healthy controls and 26 patients with histologically verified MG. Group performance was compared on the Capacity to Consent to Treatment Instrument (CCTI), a psychometric measure of MDC incorporating 4 standards (choice, understanding, reasoning, and appreciation), and on neuropsychological and demographic variables. Capacity outcomes (capable, marginally capable, or incapable) on the CCTI standards were identified for the MG group. Within the MG group, scores on demographic, clinical, and neuropsychological variables were correlated with scores on each CCTI standard, and significant bivariate correlates were subsequently entered into exploratory stepwise regression analyses to identify multivariate cognitive predictors of the CCTI standards.ResultsPatients with MG performed significantly below controls on consent standards of understanding and reasoning, and showed a trend on appreciation. Relative to controls, more than 50% of the patients with MG demonstrated capacity compromise (marginally capable or incapable outcomes) in MDC. In the MG group, cognitive measures of verbal acquisition/recall and, to a lesser extent, semantic fluency predicted performance on the appreciation, reasoning, and understanding standards. Karnofsky score was also associated with CCTI performance.ConclusionsSoon after diagnosis, patients with malignant glioma (MG) have impaired capacity to make treatment decisions relative to controls. Medical decision-making capacity (MDC) impairment in MG seems to be primarily related to the effects of short-term verbal memory deficits. Ongoing assessment of MDC in patients with MG is strongly recommended.
| S-EPMC2833103 | biostudies-literature
Project description:ObjectiveTo investigate recovery of medical decision-making capacity (MDC) over the first year following traumatic brain injury (TBI).MethodsA total of 177 participants (111 persons with TBI and 66 healthy controls) were recruited from an inpatient/outpatient TBI rehabilitation unit and outpatient neurology department. Participants with TBI were classified by injury severity into subgroups: mild TBI (mTBI; n = 28), complicated mild TBI (cmTBI; n = 23), and moderate/severe TBI (msevTBI; n = 60). Control and TBI groups were compared at 1 month (t1), 6 months (t2), and 12 months (t3) postinjury using the Capacity to Consent to Treatment Instrument (CCTI), which evaluates MDC using 5 consent standards: expressing choice, reasonable choice, appreciation, reasoning, and understanding.ResultsRelative to controls, no TBI group displayed impairment on CCTI expressing choice or reasonable choice at any timepoint. Those with mTBI had reduced appreciation and understanding at t1, which resolved by t2. The cmTBI and msevTBI groups were impaired on all 3 complex consent standards at t1. While patients with cmTBI improved to a level similar to controls by t3, those with msevTBI remained impaired on reasoning and understanding. Across all TBI groups, notable MDC improvement only occurred over the first 6 months postinjury.ConclusionsOver 1 year, most individuals with mTBI or cmTBI regain MDC, while many individuals with msevTBI have lingering deficits in reasoning and comprehension of treatment information. Clinical recovery of MDC occurs primarily during the first 6 months post-TBI regardless of injury severity. Clinicians can therefore identify MDC outcomes in TBI at 6 months postinjury.
| S-EPMC5027810 | biostudies-literature
Project description:ObjectiveTo investigate recovery of medical decision-making capacity (MDC) over 6 months in persons with traumatic brain injury (TBI) stratified by injury severity.DesignLongitudinal study comparing controls and patients with TBI 1 month after injury (t1) and 6 months after injury (t2).SettingInpatient TBI rehabilitation unit and outpatient neurology department.ParticipantsParticipants (N=151) consisted of control subjects (n=60) and patients with TBI (n=91) stratified by injury severity: mild TBI (mTBI; n=27), complicated mild TBI (cmTBI; n=20), and moderate/severe TBI (msevTBI; n=44).InterventionsNot applicable.Main outcome measuresWe used the Capacity to Consent to Treatment Instrument to evaluate MDC performance on 5 consent standards (expressing choice, reasonable choice, appreciation, reasoning, and understanding). We also assigned capacity impairment ratings on the consent standards to each participant with TBI using cut scores referenced to control performance.ResultsControl performance was stable across time on the consent standards. Patients with mTBI and cmTBI performed below controls on the understanding standard at t1 but not t2. Patients with msevTBI performed below controls on appreciation, reasoning, and understanding at t1, and on appreciation and understanding at t2, but showed substantial improvement over time.ConclusionsRegardless of injury severity, all groups with TBI demonstrated baseline impairment of MDC with subsequent partial or full recovery of MDC over a 6-month period. However, a sizeable proportion of individual patients with TBI in each group continued to demonstrate capacity compromise at 6 months postinjury. Clinically, this finding suggests that individuals with TBI, regardless of injury severity, need continued monitoring regarding MDC for at least 6 months after injury.
| S-EPMC4652592 | biostudies-literature
Project description:IntroductionMost medical decisions in pediatrics involve surrogate decision-makers. Because of this, pediatricians are even more likely to encounter ethical conflicts and dilemmas surrounding medical decision-making. Pediatricians continue to report a lack of preparedness to manage situations when conflicts and dilemmas arise, suggesting a gap in education. In response to this gap, we developed a module on the ethics of medical decision-making focused on pediatrics.MethodsThe Ethics of Pediatric and Young Adult Medical Decision-Making module included three case-based, small-group sessions on decision-making capacity and advance directives, parental decision-making, and informed consent and adolescent assent. Session materials were developed based on expert opinion and previously published content. Sessions were developed for pediatric residents; however, medical students rotating on pediatrics also participated in most sessions. Trainees completed pre- and postsession assessments of comfort and understanding.ResultsAn average of 19 learners completed each session. Understanding of ethical principles increased after each session. Seventy-nine percent of trainees reported increased understanding of ethical principles related to decision-making capacity, and 88% reported increased understanding of standards of surrogate decision-making. Following the session on obtaining consent and assent, 71% of trainees reported comfort obtaining consent compared to 57% reporting comfort obtaining assent.DiscussionThis module successfully increased trainee comfort with many ethical issues related to pediatric medical decision-making. Areas where trainee comfort was still low postsession-specifically, obtaining consent or assent-are content areas where actual practice of these psychomotor skills is likely necessary.
| S-EPMC7880251 | biostudies-literature
Project description:ObjectiveTo investigate longitudinal change in the medical decision-making capacity (MDC) of patients with amnestic mild cognitive impairment (MCI) under different consent standards.MethodsEighty-eight healthy older controls and 116 patients with MCI were administered the Capacity to Consent to Treatment Instrument at baseline and at 1 to 3 (mean = 1.7) annual follow-up visits thereafter. Covariate-adjusted random coefficient regressions were used to examine differences in MDC trajectories across MCI and control participants, as well as to investigate the impact of conversion to Alzheimer disease on MCI patients' MDC trajectories.ResultsAt baseline, MCI patients performed significantly below controls only on the three clinically relevant standards of appreciation, reasoning, and understanding. Compared with controls, MCI patients experienced significant declines over time on understanding but not on any other consent standard. Conversion affected both the elevation (a decrease in performance) and slope (acceleration in subsequent rate of decline) of MCI patients' MDC trajectories on understanding. A trend emerged for conversion to be associated with a performance decrease on reasoning in the MCI group.ConclusionsMedical decision-making capacity (MDC) decline in mild cognitive impairment (MCI) is a relatively slow but detectable process. Over a 3-year period, patients with amnestic MCI show progressive decline in the ability to understand consent information. This decline accelerates after conversion to Alzheimer disease (AD), reflecting increasing vulnerability to decisional impairment. Clinicians and researchers working with MCI patients should give particular attention to the informed consent process when conversion to AD is suspected or confirmed.
| S-EPMC2676965 | biostudies-literature
Project description:Background/objectivesAs the elderly population and associated number of persons with dementia increase, so does the need for decision-making capacity assessments (DMCAs). Many healthcare professionals (HCPs), however, do not feel prepared to conduct DMCAs. We have provided 4-h DMCA workshops to HCPs since 2006 and offered physicians either a 3-h or 2-day DMCA workshop from 2013 to present. We evaluated the effectiveness of the workshops on self-reported key concepts of capacity.DesignPre-/post-test design.SettingDMCA workshops for physicians across Canada and HCPs within Alberta.ParticipantsTwo hundred and eighty-one physicians and 835 HCPs.MeasurementsPre-/post-workshop ratings on level of comfort with and understanding of 15 core DMCA concepts using 4-point Likert-type items.ResultsFor the DMCA workshops among physicians, ten 3-h workshops were held in 2014-2015 with 166 participants and seven 2-day workshops, between 2014 and 2018, with 115 participants. With respect to the self-report on core DMCA concepts, at least 62.7% (range: 62.7%-89.6%) of physician participants had higher post-workshop ratings (sign test; p < 0.001) than pre-workshop ratings for all core DMCA concepts. For the DMCA workshops among HCPs, 4-h workshops were delivered to 835 HCP participants from 2008 to 2012. At least 49.6% of participants (range: 49.6%-78.9%) had increased post-workshop ratings (sign test; p < 0.001) for all level of comfort items with and understanding of core DMCA concepts.ConclusionThere is a need for DMCA training for physicians and HCPs. The content and method of the workshops are effective at enhancing self-reported level of comfort with and understanding of core DMCA concepts.
| S-EPMC8247986 | biostudies-literature
Project description:Cells generate phenotypic diversity both during development and in response to stressful and changing environments, aiding survival. Functionally vital cell fate decisions from a range of phenotypic choices are made by regulatory networks, the dynamics of which rely on gene expression and hence depend on the cellular energy budget (and particularly ATP levels). However, despite pronounced cell-to-cell ATP differences observed across biological systems, the influence of energy availability on regulatory network dynamics is often overlooked as a cellular decision-making modulator, limiting our knowledge of how energy budgets affect cell behaviour. Here, we consider a mathematical model of a highly generalisable, ATP-dependent, decision-making regulatory network, and show that cell-to-cell ATP variability changes the sets of decisions a cell can make. Our model shows that increasing intracellular energy levels can increase the number of supported stable phenotypes, corresponding to increased decision-making capacity. Model cells with sub-threshold intracellular energy are limited to a singular phenotype, forcing the adoption of a specific cell fate. We suggest that energetic differences between cells may be an important consideration to help explain observed variability in cellular decision-making across biological systems.
| S-EPMC6934696 | biostudies-literature
Project description:BackgroundThe contribution of patients' non-medical characteristics to individual physicians' decision-making has attracted considerable attention, but little information is available on this topic in the context of collective decision-making. Medical decision-making at cancer centres is currently carried out using a collective approach, at MultiDisciplinary Team (MDT) meetings. The aim of this study was to determine how patients' non-medical characteristics are presented at MDT meetings and how this information may affect the team's final medical decisions.DesignObservations were conducted at a French Cancer Centre during MDT meetings at which non-standard cases involving some uncertainty were discussed from March to May 2014. Physicians' verbal statements and predefined contextual parameters were collected with a non-participant observational approach. Non numerical data collected in the form of open notes were then coded for quantitative analysis. Univariate and multivariate statistical analyses were performed.ResultsIn the final sample of patients' records included and discussed (N = 290), non-medical characteristics were mentioned in 32.8% (n = 95) of the cases. These characteristics corresponded to demographics in 22.8% (n = 66) of the cases, psychological data in 11.7% (n = 34), and relational data in 6.2% (n = 18). The patient's age and his/her "likeability" were the most frequently mentioned characteristics. In 17.9% of the cases discussed, the final decision was deferred: this outcome was positively associated with the patients' non-medical characteristics and with uncertainty about the outcome of the therapeutic options available.LimitationsThe design of the study made it difficult to draw definite cause-and-effect conclusions.ConclusionThe Social Representations approach suggests that patients' non-medical characteristics constitute a kind of tacit professional knowledge that may be frequently mobilised in physicians' everyday professional practice. The links observed between patients' attributes and the medical decisions made at these meetings show that these attributes should be taken into account in order to understand how medical decisions are reached in difficult situations of this kind.
| S-EPMC4864423 | biostudies-literature
Project description:BackgroundDual processing theory of human cognition postulates that reasoning and decision-making can be described as a function of both an intuitive, experiential, affective system (system I) and/or an analytical, deliberative (system II) processing system. To date no formal descriptive model of medical decision-making based on dual processing theory has been developed. Here we postulate such a model and apply it to a common clinical situation: whether treatment should be administered to the patient who may or may not have a disease.MethodsWe developed a mathematical model in which we linked a recently proposed descriptive psychological model of cognition with the threshold model of medical decision-making and show how this approach can be used to better understand decision-making at the bedside and explain the widespread variation in treatments observed in clinical practice.ResultsWe show that physician's beliefs about whether to treat at higher (lower) probability levels compared to the prescriptive therapeutic thresholds obtained via system II processing is moderated by system I and the ratio of benefit and harms as evaluated by both system I and II. Under some conditions, the system I decision maker's threshold may dramatically drop below the expected utility threshold derived by system II. This can explain the overtreatment often seen in the contemporary practice. The opposite can also occur as in the situations where empirical evidence is considered unreliable, or when cognitive processes of decision-makers are biased through recent experience: the threshold will increase relative to the normative threshold value derived via system II using expected utility threshold. This inclination for the higher diagnostic certainty may, in turn, explain undertreatment that is also documented in the current medical practice.ConclusionsWe have developed the first dual processing model of medical decision-making that has potential to enrich the current medical decision-making field, which is still to the large extent dominated by expected utility theory. The model also provides a platform for reconciling two groups of competing dual processing theories (parallel competitive with default-interventionalist theories).
| S-EPMC3471048 | biostudies-literature
Project description:BACKGROUND:Some studies, mainly coming from the U.S., indicate disparities in heart failure (HF) treatment according to migration/ethnicity. However, respective results are inconsistent and cannot be transferred to other health care systems. Thus, we will address the following research question: Are there differences in the diagnosis and management of HF between patients with and without a Turkish migration background in Germany? METHODS:A factorial experimental design with video vignettes was applied. In the filmed simulated initial encounters, professional actors played patients, who consulted a primary care physician because of typical HF symptoms. While the dialog was identical in all videos, patients differed in terms of Turkish migration history (no/yes), sex (male/female), and age (55?years/75?years). After viewing the video, primary care physicians (N =?128) were asked standardized and open ended questions concerning their decisions on diagnosis and therapy. RESULTS:Analyses revealed no statistically significant differences (p <?0.05), but a consistent tendency: Primary care doctors more often asked lifestyle and psychosocial questions, they more often diagnosed HF, they gave more advice to rest and how to behave in case of deterioration, they more often auscultated the lung, and more often referred to a specialist when the patient has a Turkish migration history compared to a non-migrant patient. Differences in the medical decisions between the two groups ranged between 1.6 and 15.8%. In 10 out of 12 comparisons, differences were below 10%. CONCLUSIONS:Our results indicate that are no significant inequalities in diagnosis and management of HF according to a Turkish migration background in Germany. Primary care physicians' behaviour and medical decision making do not seem to be influenced by the migration background of the patients. Future studies are needed to verify this result and to address inequalities in HF therapy in an advanced disease stage.
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