Medical Decision-making Capacity Research Articles

Physicians’ personal values in determining medical decision-making capacity: a survey study

Decision-making capacity (DMC) evaluations are complex clinical judgements with important ethical implications for patients’ self-determination. They are achieved not only on descriptive grounds but are inherently normative and, therefore, dependent...

Cognitive predictors of understanding treatment decisions in patients with newly diagnosed brain metastasis.

Medical decision-making capacity is a higher-order functional skill that refers to a patient's ability to make informed, sound decisions related to care and treatment. In a medical context, understanding is the most cognitively demanding consent standard and refers to a patient's ability to comprehend information to the extent that informed decisions can be made. The association between reasoning and cognition was examined using data from 41 patients with diagnosed brain metastasis. All diagnoses were made by a board-certified radiation oncologist and were verified histologically. In total, 41 demographically matched, cognitively healthy controls were also included to aid in classifying patients with brain metastasis according to reasoning status (ie, intact or impaired). Results indicate that measures of simple attention, verbal fluency, verbal memory, processing speed, and executive functioning were all associated with understanding, and that verbal memory and phonemic fluency were the primary cognitive predictors. Using these two primary predictors, equations can be constructed to predict the ability to understand treatment decisions in patients with brain metastasis. Although preliminary, these data demonstrate how cognitive measures can estimate understanding as it relates to medical decision-making capacities in these patients. Clinically, these findings suggest that poor verbal memory and expressive language function could serve as "red flags" for reduced consent capacity in this patient population, thus signaling that a more comprehensive medical decision-making capacity evaluation is warranted.

Capacity of patients with brain metastases to make treatment decisions.

The aim of this study was to investigate medical decision-making capacity (MDC) in patients with brain metastases. Participants were 41 adults with brain metastases with Karnofsky Performance Status scores of ≥70 who were recruited from an academic medical center and 41 demographically matched controls recruited from the community. We evaluated MDC using the Capacity to Consent to Treatment Instrument and its four clinically relevant consent standards (expressing a treatment choice, appreciation, reasoning, and understanding). Capacity impairment ratings (no impairment, mild/moderate impairment, and severe impairment) on the consent standards were also assigned to each participant with brain metastasis using cutoff scores derived statistically from the performance of the control group. The brain metastasis patient group performed significantly below controls on consent standards of understanding and reasoning. Capacity compromise was defined as performance ≤1.5 standard deviations below the control group mean. Using this definition, approximately 60% of the participants with brain metastases demonstrated capacity compromise on at least one MDC standard. When defining capacity compromise as performance ≤1.5 standard deviation below the control group mean, over half of patients with brain metastases have reduced capacity to make treatment decisions. This impairment is demonstrated shortly after initial diagnosis of brain metastases and highlights the importance of routine clinical assessment of MDC following diagnosis of brain metastasis. These results also indicate a need for the development and investigation of interventions to support or improve MDC in this patient population.

Impairment of medical decisional capacity in relation to Karnofsky Performance Status in adults with malignant brain tumor.

We aimed to investigate the relationship between medical decisional capacity (MDC) and Karnofsky Performance Status (KPS) in adults with malignant brain tumors. Participants were 71 adults with primary (n = 26) or metastatic (n = 45) brain tumors. Testing to determine KPS scores and MDC was performed as close together as possible for each patient. Participants were administered a standardized measure of medical decision-making capacity (Capacity to Consent to Treatment Instrument [CCTI]) to assess 3 treatment consent abilities (ie, appreciation, reasoning, and understanding). Capacity classifications (ie, capable, marginally capable, and incapable) were established using cut scores previously derived from healthy control CCTI performance. The majority of participants had KPS scores of 90-100 (n = 39), with the remainder divided between KPS scores of 70-80 (n = 26) and 50-60 (n = 6). Comparisons between persons with KPS scores of 90-100 or 70-80 revealed significant differences on the CCTI consent standards of understanding and appreciation. Participants with KPS ratings of 90-100 achieved 46% capable classifications across all CCTI standards, in contrast with 23% of participants with KPS ratings of 70-80, and 0% of participants with KPS ratings of 50-60. A substantial portion of brain-tumor patients with KPS scores reflecting only minimal disability nonetheless demonstrated impairments on standardized measures of MDC. Clinicians working with this adult population should carefully screen for capacity to make clinical treatment decisions regardless of functional/performance status.

Assessing capacity in psychiatric patients with acute medical illness who refuse care.

Three cases are presented that demonstrate the difficulty of assessing medical decision-making capacity in patients with psychiatric illness who are refusing care. Health professionals often assess capacity differently in practice. Provided their patients have some understanding of their illness and have some plans for meeting basic needs, psychiatrists are often inclined to give patients the freedom to refuse care even if they do not exhibit a full understanding of the medical facts of their case and why they are refusing it. Adult medicine physicians, in contrast, are inclined to require patients to state a more complete understanding of the benefits and burdens of evaluation and treatment before allowing them to refuse care when their refusals might result in adverse medical outcomes. The 3 cases exemplify the tension between these approaches and highlight the role of hospital ethics consultation in addressing this conflict.

Capable of More: Some Underemphasized Aspects of Capacity Assessment

The 4-abilities model of decision-making capacity is vulnerable to constricted application and teaching. The authors attempt to assert the fundamentally clinical nature of capacity evaluations, while acknowledging that the concept of decision-making capacity must be legally grounded. Relevant aspects of clinical care are examined and emphasized as they apply to the evaluation of capacity for medical decision making. Accessing patients' maximal abilities, attending to noncognitive aspects of choice, and identifying diagnostic explanations for patients' difficulties are important components of these assessments. The evaluation of medical decision-making capacity is not a purely forensic task; it is enhanced by an approach that bridges the clinical-forensic divide.

Decision-making capacity at the end of life

Medical decision-making capacity refers to the assessment of a patient's ability to make a specific clinical choice. Systematic evaluation of capacity includes a review of the core components of decision making, alongside consideration of potential outcomes associated with the choice. At the end of life, assessing capacity may be complicated by drastic shifts in the risk–benefit profile of acute medical interventions, along with changes to a patient's affect, behavior, and cognition. Maintaining an appreciation for the elements of capacity, the process of assessing capacity, and the associated challenges at the end of life can help palliative care clinicians to ensure provision of respectful, patient-centered care. This manuscript provides an overview of decision-making capacity in the palliative care population, while clarifying common barriers to capacity at the end of life, and offering considerations for appropriate involvement of psychiatric consultants in this process.

Medical decision-making capacity: knowledge, attitudes, and assessment practices of physicians in Switzerland.

Decision-making capacity (DMC) is an indispensable prerequisite for patients' informed consent and therefore directly related to the right to self-determination. In view of this ethical implication, valid and reliable assessment of DMC is essential to best practice. In general, and with particular regard to the Swiss context, little is known about healthcare practitioners' knowledge of and attitudes to the concept of DMC, or about their assessment practice. The present study aims to close this gap. A randomised representative sample of 3,500 physicians, including all specialisms and from all parts of Switzerland, were contacted by mail and invited to complete a survey questionnaire, which was specifically designed for the purpose of the study. A total of 763 questionnaires were included for analysis (response rate: 22.15%). Physicians diverged in their general understanding of DMC as either a dichotomous or a gradual concept, and in relation to the conceptual challenges of decisional relativity and risk-relativity. Along with cognitive abilities, emotional, intuitive, or evaluative factors were acknowledged as important criteria. DMC was most often assessed implicitly: explicit assessments, if conducted, depended mainly on unstructured interviews. A discrepancy was identified between physicians' perceptions of responsibility and qualification, indicating a related need for more guidance and training. The conceptual and practical challenges of DMC are far from being resolved. There is a clear need for more guidance in this area in the form of guidelines, tools, and training.

A Clinical Pathway for Guardianship at Dartmouth-Hitchcock Medical Center

Guardianship may be necessary when inpatients lack medical decision-making capacity and are unwilling to go home to be cared for by interested proxy decision makers. Interventions, centered on a clinical pathway, were conducted at Dartmouth-Hitchcock Medical Center (DHMC; Lebanon, New Hampshire). Because guardianship occurs at the interface of clinical care and governmental bureaucracy, quality improvement efforts focused on "in-hospital" processes, while actions were taken to improve communication between clinical teams and the legal system. A multidisciplinary quality improvement team mapped the DHMC guardianship process and analyzed the causes for delays before creating the clinical pathway. Specific interventions were designed and implemented to address the identified improvement areas. For the 26 guardianship patients during a two-year period (May 1, 2011-May 1, 2013), the charges incurred totaled approximately $4,000,000--for an average of more than $150,000 per patient. The medically unnecessary days of their length of hospital stay decreased from an average of 27.8 to 11.3, a statistically significant result as demonstrated by statistical process control analysis. The shorter hospitalizations of the last 13 patients amounted to 214.5 medically unnecessary hospital days saved and more than $1.2 million in charges reduced during the two-year period. Guardianship is a complex process that generates significant delays in appropriate care and increases in charges. The redesigned, standardized guardianship process, as defined in the clinical pathway, reduced associated medically unnecessary days of hospitalization.

Recovery Over 6 Months of Medical Decision-Making Capacity After Traumatic Brain Injury

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.

Capacity Evaluations in Late-Stage Pregnancy

Consultation psychiatrists are often called upon to assess capacity for medical decision-making in the obstetrical setting. Although these assessments are similar to those in other clinical settings, there is one notable difference: the presence of a fetus who can suffer adverse outcomes due to decisions of the pregnant patient, particularly refusal of medical treatment. Specific questions of capacity vary with the stage of pregnancy. Evaluations in the first trimester (weeks 1–12) are often related to requests for elective termination, second trimester (weeks 13–28) assessments tend to focus onmanagement of nonviable pregnancies, including termination and delivery induction, and capacity evaluations in the third trimester (weeks 29–40) often center on consent for emergent or elective cesarean section. Assessments of medical decision-making capacity in the obstetrical setting have unique ethical and legal implications, both for the pregnant patient and for her treating physician. Questions of capacity during pregnancy are perhaps best approached using a framework that considers the ethically-based obligations that a pregnant woman potentially has toward her unborn child, the treatingphysician’s obligations to bothmother and child, and the conflicts that arise when these obligations go unfulfilled. In support of this, we present 2 obstetrical cases that involve questions of capacity during the third trimester of pregnancy, followed by a discussion of relevant bioethical and legal issues as well as recommendations for the consultation psychiatrist.

Cognitive predictors of medical decision-making capacity in mild cognitive impairment and Alzheimer's disease.

Impaired capacity to make decisions in everyday life and situations of medical treatment is an inevitable consequence of the cognitive decline in Alzheimer's disease (AD). The objective of this study was to identify the most powerful cognitive component(s) that best predicted medical decision-making capacity (MDMC) in patients with AD and mild cognitive impairment. Three groups of subjects participated in the study: patients with AD (n = 20), mild cognitive impairment (n = 21), and healthy control subjects (n = 33). MDMC was assessed by the linguistic instrument for medical decision-making (LIMD) and related to demographics and 27 cognitive test measures. The cognitive tests were found to aggregate into four components using a principle component analysis. The four components, which correspond to verbal knowledge, episodic memory, cognitive speed, and working memory, accounted for 73% of the variance in LIMD according to a stepwise regression analysis. Verbal knowledge was the most powerful predictor of LIMD (beta = 0.66) followed by episodic memory (beta = 0.43), cognitive speed (beta = 0.32), and working memory (beta = 0.23). The best single test as shown by the highest correlation with LIMD was Reading speed (R = 0.77). Multiple factors are involved in MDMC in subjects with cognitive impairment. The component of verbal knowledge was the best predictor of MDMC and Reading speed was the most important single cognitive test measurement, which assessed both rapid Reading and understanding of text.

Abstract T P311: Prospective Assessment of Medical Decision-Making Capacity in Stroke Patients using a Rapid Standardized Questionnaire: Can My Patient Consent for Treatment or Clinical Trial?

Background and Objective: Stroke deficits frequently alter patient medical decision-making capacity ( MDC ) resulting in lost trial recruitment and reducing validity of qualitative outcome measures. Since no standardized tool exists for MDC evaluation in stroke, we tested a validated standardized questionnaire used for medical patients, the Aid to Capacity Evaluation ( ACE ), vs. independent clinician assessment in mild-to-moderate severity stroke patients. We hypothesized that the ACE would show similar agreement with clinicians and therefore be appropriate for rapid bedside screening for MDC. Methods: Ischemic or hemorrhagic stroke patients underwent 3 independent capacity assessments by a medical student (ACE), psychiatrist ( PS ) and neuropsychologist ( NP ). Inter-rater reliability was assessed using intraclass correlation ( ICC ) and Cohen’s kappa. Assuming the clinician as the gold-standard, we tested sensitivity and specificity vs. ACE. Results: All planned 30 patients (90% ischemic; mean age 67.8; 60% male; median NIHSS = 6) were prospectively enrolled between 7/13- 8/13. The median time from stroke onset to first capacity assessment was 3.3 days. 11 (37%) had aphasia and/or neglect and 38% had left hemispheric stroke (see table). ACE agreed with PS and NP in 59% (kappa 0.293; 95% CI 0.08-0.51) and 76% (kappa 0.494; 95% CI 0.19-0.80) of cases, respectively. Despite low sensitivity and NPV, specificity and PPV of ACE vs. clinicians ranged 88-100%; only classifying 1 patient capable when clinicians scored incapable. ICC among all raters was 0.474 (95% CI 0.25-0.68). Conclusions: There was fair overall agreement between a standardized questionnaire and expert clinicians. The ACE was highly specific in identifying mild-to-moderate severity stroke patients who lacked MDC. The ACE might be a useful screening tool to determine lack of capacity in stroke patients, but low sensitivity for identifying presence of capacity warrants caution and further study.

Medical Decision-Making Capacity: High Stakes, Complex, and Fluid

In “Assessing Decision-Making Capacity in the Behaviorally Nonresponsive Patient With Residual Covert Awareness,” Peterson and colleagues (2013) argue that if we had adequate tests for medical deci...

Investigating medical decision‐making capacity in patients with cognitive impairment using a protocol based on linguistic features

A critical question is whether cognitively impaired patients have the competence for autonomous decisions regarding participation in clinical trials. The present study aimed to investigate medical decision-making capacity by use of a Swedish linguistic instrument for medical decision-making (LIMD) in hypothetical clinical trials in patients with Alzheimer's disease (AD) and mild cognitive impairment (MCI). Three comparable groups (age, education) participated in the study: AD (n = 20; MMSE: 24.1 ± 3.3) and MCI (n = 22; MMSE: 26.7 ± 2.4) patients and healthy controls (n = 37; MMSE: 29.1 ± 1.0). Medical decision-making capacity was operationalized as answers to questions regarding participation in three hypothetical clinical trials. Answers were scored regarding comprehension, evaluation and intelligibility of decisions, and a total LIMD score was used as the measure of medical decision-making ability. Groups differed significantly in LIMD with AD patients performing worst and MCI poorer than the control group. A strong association was found between all LIMD scores and diagnosis which supported the assertion that LIMD as it is designed is a one-dimensional instrument of medical decision-making capacity (MDMC). The results indicate that a fundamental communicative ability has an impact on the competence for autonomous decisions in cognitive impairment.

Helping Residents Make ‘Good’ or ‘Bad’ Decisions

Helping Residents Make ‘Good’ or ‘Bad’ Decisions

Advancing adolescent capacity to consent to transgender-related health care in Colombia and the USA

Many sexual and reproductive health care services, including gender reassignment treatment, facilitate reproductive autonomy and self-determination of gender identity. Individuals who are unable to refuse or consent to these services on their own behalf, such as adolescents, are at risk of violations of their rights to privacy and self-determination. This paper explores the issue of adolescent capacity to consent to transgender-related health care in Colombia and the United States (USA), focusing on the two countries' struggles to balance the rights of adolescents to make autonomous and confidential decisions with the rights of their parents. Unfortunately, many countries, including Colombia and the USA, have been slow to develop jurisprudence and legislation that explicitly protect transgender adolescents' capacity to consent to gender assignment treatment. Courts in Colombia, however, have developed jurisprudence that restricts parents' ability to make medical decisions on behalf of their infant intersex children, which lays a strong normative foundation for advancing adolescent capacity to consent to transgender-related health care. It is a strategy that may prove effective in other countries in the Americas, even those with different frameworks for adolescent medical decision-making capacity, such as the USA.

Beyond Capacity: Identifying Ethical Dilemmas Underlying Capacity Evaluation Requests

Psychiatric consultations involving the evaluation of patients' medical decision-making capacity often seem to have little to do with truly compromised patient autonomy. The authors seek to examine hidden ethical dilemmas that lead to capacity evaluation requests. The authors utilize the "principlism" approach to biomedical ethics to illustrate some common moral issues in patient care that are poorly captured by the "autonomy-versus-paternalism" paradigm. Patient autonomy sometimes comes into conflict with ethical imperatives to do "good," to avoid harm, and to deliver care fairly, as well as with the autonomy of others. Consultation psychiatrists are well positioned to unearth these dilemmas and begin to address them. Effective engagement of everyday ethics in clinical medicine is hindered by reflexive resort to capacity evaluations when moral problems arise. Greater attention to matters of values, aggressive urges, and obligations to others can enhance the negotiation of routine ethical dilemmas.

Medical Decision-Making Capacity and Cataract Surgery

Medical decision making has evolved from a paternalistic, "doctor knows best system" to one of shared decision making between health care providers and patients. Shared decision making involves informed consent related to the proposed health care options and medical decision-making capacity by patients. Adults aged 90 and older are the fastest growing segment of the US population. Dementia prevalence increases dramatically among this group. Dementia may affect the ability of patients to participate in shared decision making. The case of a 91-year-old female rehabilitation inpatient with mild cognitive impairment, cataracts, and macular degeneration is presented. The case highlights key issues of informed decision making and medical decision-making capacity related to cataract surgery. Video examples of the assessment of cognitive and medical decision-making capacity are presented.

A patient with dementia: Decision-making capacity and surrogate decision makers

Medical decision-making capacity encompasses a patient's ability to comprehend diagnostic and/or therapeutic options, evaluate the context within which those options are presented, choose an option that is in keeping with his or her value system, and communicate that choice to the appropriate provider.1 According to a recent meta-analysis of medical decision-making capacity assessment tools, approximately 3% of healthy elderly adults lack medical decision-making capacity, as judged in most cases by a comprehensive evaluation by a psychiatrist.