Are non-demented patients with Parkinson's disease able to decide about their own treatment?

IntroductionPatients with Parkinson's disease (PD) are often confronted with difficult medical decisions, which might be hampered by cognitive impairment or chronic stress. Little is known, however, about the capacity to make medical decisions and the influence of cognition and stress on this ability. This study determined whether non-demented Parkinson's disease patients are able to make medical decisions and whether this capacity is influenced by cognition and stress.MethodsForty-six Parkinson's disease patients and 94 healthy controls were assessed with the MacArthur Competence Assessment Tool for Treatment during which participants were presented with deep brain stimulation as a treatment option for a fictional Parkinson's disease patient. Furthermore, all participants were examined with a stress questionnaire and a neuropsychological test battery.ResultsParkinson's disease patients performed better on the total scale and ‘Understanding’ subscale of the MacArthur Competence Assessment Tool for Treatment than healthy controls. Lower performance on the Concept Shifting Test in the Parkinson's disease group and lower performance on Letter Digit Substitution Test in the healthy control group predicted lower medical decision-making capacity. No association was found between stress and medical decision-making.ConclusionNon-demented Parkinson's disease patients show no impairments in medical decision-making compared to healthy controls. In fact, Parkinson's disease patients have a better understanding of their disease and the benefits and risks of treatment options than healthy controls. Psychomotor speed and attention were negatively associated with medical decision-making in both groups. This implies that when these cognitive functions decline, the capacity to make medical decisions also declines.     

Assessing decision-making capacity at end of life

Objective

Patients with terminal illness often face important medical decisions that may carry ethical and legal implications, yet they may be at increased risk for impaired decisional capacity. This study examined the prevalence of impairment on the four domains of decisional capacity relevant to existing legal standards.

Method

Twenty-four adults diagnosed with a terminal illness completed the MacArthur Competence Assessment Tool for Treatment, a semi-structured measure of decision-making capacity and measures of cognitive functioning and psychological distress.

Results

Approximately one third of the sample demonstrated serious impairment on at least one domain of decisional capacity. The greatest proportion of impairment was found on subscales that rely heavily on verbal abilities. Decisional capacity was significantly associated with cognitive functioning and education, but not with symptoms of anxiety or depression.

Conclusions

This study is the first to examine decisional capacity in patients with terminal illness relative to legal standards of competence. Although not universal, decisional impairment was common. Clinicians working with terminally ill patients should frequently assess capacity as these individuals are called on to make important medical decisions. Comprehensive assessment will aid clinicians in their responsibility to balance respect for patient autonomy with their responsibility to protect patients from harm resulting from impaired decisional capacity.     

Consent in Impaired Populations

Impairments in patients with dementia and other disorders affecting cognition may have a negative impact on their capacity to provide consent to treatment or to participation in research. A growing literature confirms that even patients with mild cognitive impairment may experience decrements in decisional abilities, findings that are more pronounced still in the early stages of dementia. However, most patients with mild dementia probably remain competent to provide a valid consent to treatment or research, and even some patients with moderate dementia may retain capacity in particular circumstances. Clinical evaluation of decisional competence has been augmented by structured approaches, including reliable instruments that may be used in the clinical setting. To avoid needlessly depriving patients of their right to make health care decisions, evaluations should be designed to maximize patient performance. However, when substitute consent is necessary, state laws generally provide a range of options, including advance directives and familial consent.     

Ethical issues of diagnostic tests in neurology

The presence of ethical issues in the diagnostic testing process is a common experience in Neurology. Pacient Ls consent has often some difficulties because of the limited capacity of neurological patients due to cognitive impairment, neurological deficits or emotional disturbances. An explicit assessment of capacity should be performed, including the analysis of patient Ls ability to make complex decisions and its operational components. The consent must also include other ethical and legal considerations. When neurologists make the election of diagnostic tests, they have two obligations: being beneficent with their patients and using health resources properly because of distributive justice. Diagnostic necessities and knowledge of efficiency of tests must be defined in order to make beneficent and just diagnostic decisions.     

Capacity for decision-making in Alzheimer's disease: selfhood, positioning and semiotic people

The aim of this article is to explore some of the ethical issues surrounding the assessment and determination of capacity of people with dementia in light of their meaning-making ability as shown through discourse. Discourse analysis, two illustrative cases, social construction theory and positioning are used to highlight some of the ethical dilemmas involved in basing a determination of capacity on the diagnosis of dementia and neuropsychological tests of cognitive function. Although neuropsychological tests have their place in assessing some aspects of cognitive function, aspects cognition such as meaning-making ability and selfhood cannot be assessed in a standard format. In dementia, there can be a differential impairment of recall memory while the personality, values and substantial long-term memory remain intact, as does implicit memory for recent events. People with dementia are vulnerable to being negatively positioned, thereby unfairly undermining their rights to make decisions about aspects of their lives. Assessing the capacity of a person with dementia to engage in decision-making is presently in need of examination so as to take into account the person's meaning-making ability and selfhood. Incorrect negative positioning, based on the diagnosis and defects in recall memory, can obscure intact cognitive abilities that allow a person to make decisions about aspects of living, creating the possibility of lasting harm being inflicted on the person with dementia.     

Supported Decision Making in Serious Mental Illness

Objective: Making decisions is central to the exercise of control over one’s well-being. Many individuals with serious mental illness (SMI) experience limitations in their decision-making capacity. These individuals have often been placed under legal guardianship and substitute decision makers have been appointed to make decisions on their behalf. More recently, supported decision making (SDM) has emerged as a possible alternative in some cases. SDM involves recruitment of trusted supports to enhance an individual’s capacity in the decision-making process, enabling him or her to retain autonomy in life decisions. This overview examines issues associated with decision-making capacity in SMI, frameworks of substitute decision making and SDM, and emerging empirical research on SDM. Method: This is an overview of the medical and legal literature on decision making capacity and supported decision making for persons with SMI. Results: Many but not all individuals with SMI exhibit decrements in decision-making capacity and skill, in part due to cognitive impairment. There are no published data on rates of substitute decision making/guardianship or SDM for SMI. Only three empirical studies have explored SDM in this population. These studies suggest that SDM is viewed as an acceptable and potentially superior alternative to substitute decision making for patients and their caretakers. Conclusions: SDM is a promising alternative to substitute decision making for persons with SMI. Further empirical research is needed to clarify candidates for SDM, decisions in need of support, selection of supporters, guidelines for the SDM process, integration of SDM with emerging technological platforms, and outcomes of SDM. Recommendations for implementation of and research on SDM for SMI are provided.     

Neuropsychological impairment corresponds with poor understanding of informed consent disclosures in persons diagnosed with major depression

Incapacity to make decisions about medical treatment is associated with neuropsychological impairment in a variety of illnesses. Although cognitive deficits occur often in people with major depressive illness, little research has studied its association with decisional capacity. The present investigation examined ability to understand treatment disclosures, which is a core component of decisional capacity, in 31 inpatients with depression and 16 normal controls. Depressed inpatients with diminished neuropsychological function showed poor understanding of treatment disclosures compared to the control group. Nonetheless, with sufficient cueing, depressed inpatients with diminished neuropsychological function were able to display understanding that was equivalent to the control group. Exploratory regression analyses revealed that diminished new-learning correlated with poorer understanding. Implications of these results for clinical practice and medical research involving people with major depressive illness are discussed.     

Competency and the Capacity to Make Treatment Decisions: A Primer for Primary Care Physicians

Common law dictates that individuals possess autonomy and self-determination, which encompass the right to accept or refuse medical treatment. Management of medical treatment can be complicated in situations when the ability of the patient to make reasonable decisions is called into question. Our legal system endorses the principle that all persons are competent to make reasoned decisions unless demonstrated to be otherwise. This review will discuss the standards upon which capacity and competency assessments are made. Practical suggestions are offered for clinicians to employ in patient interviews conducted to assess capacity. Issues related to advance directives, surrogate decision making, guardianship, and implied consent are also discussed. The role psychiatric consultants take in capacity assessment can assist the primary care physician confronting the complexities encountered when attempting to treat the incapacitated or incompetent patient.     

Schizophrenia, cognition and psychoeducation

Cognitive impairment among patients suffering from schizophrenia is closely linked to psychoeducation and therapeutic education. First, this cognitive impairment requires specific communication strategy and special cognitive and behavioral techniques, which make possible for the patients to improve their trainability. Some of these tools are detailed, such as solving problems, communication skills, role plays, repetition, rewarding, and motivational support. Second, functional and social impairment, and outcome, are partly consequences of these cognitive problems. Cognitive remediation targets elementary cognitive impairment, mostly with repetitive cognitive tasks, and studies show an improvement in these specific tasks, but without positive effect on functional and social aspects of the illness. Overall approaches, such as psychoeducation or therapeutic education, obtain real gains in quality of life for the patients, autonomy and clinical improvement. It's not yet possible to know if these positive results underlie improvement in elementary cognitive impairment. The combination between remediation and psychoeducation seems to be promising.     

Suicidal patients in the emergency room: a guide for evaluation and disposition.

The inexperienced emergency room clinician can find it difficult and frustrating to make decisions about patients who have threatened or attempted suicide. A review of the literature suggests two approaches to the evaluation of suicide-attempters: awareness of demographic and social characteristics that identify patients at high risk of another attempt, and simple numerical rating scales focusing on suicide predictors that help the clinician determine level of risk. The authors discuss how to choose the most appropriate disposition for the suicidal patient and emphasize the need for adequate documentation of the decision in the medical record.     

Do psychiatric patients need greater protection than medical patients when they consent to treatment?

It is commonly assumed that psychiatric patients require greater protection than medical patients when they make health care decisions. A review of the literature reveals that there is meager evidence for this belief and that both groups have significant capacity problems. Many factors other than psychiatric illness have been shown to impede understanding of informed consent information in health care settings. These include powerful emotional states, lack of a high school education, the presence of a severe medical illness, and increasing age. Clinicians can help patients become more adequate decision makers by taking such steps as providing adequate disclosure and inquiring about patient understanding. Even then, setting a realistically lenient standard of capacity seems the most practical approach. If screening for capacity is important for a specific health care decision, all vulnerable groups should be targeted.     

Cognition and disability in bipolar disorder: lessons from schizophrenia research

Harvey PD, Wingo AP, Burdick KE, Baldessarini RJ. Cognition and disability in bipolar disorder: lessons from schizophrenia research.
Bipolar Disord 2010: 12: 364–375. © 2010 The Authors. Journal compilation © 2010 John Wiley & Sons A/S. Background: Cognitive and functional impairments occur in patients diagnosed with bipolar disorder (BPD), although they are usually less severe and far less studied than in schizophrenia. There may be value in applying approaches developed in schizophrenia research to study cognitive functioning among BPD patients in areas including performance‐based disability assessment, cognitive remediation treatments, enhancement of the accuracy of real‐world functioning, and studying cognition and disability in relatives. Methods: We reviewed current research on cognitive and functional disability in BPD, noted areas of similarity and discrepancy to research on schizophrenia, and highlighted methods and approaches used to study schizophrenia that can be applied to study unmet needs of BPD patients. Results: Research in schizophrenia increasingly separates potential functional capacity from real‐world outcome status, and has assessed contributions of cognitive impairment and other illness factors to functional outcomes. For schizophrenia, various behavioral and pharmacological treatments aimed at cognitive enhancement have been attempted, with moderate success, compared to rare studies of treatment effects on cognitive impairment in BPD. Very little research has been performed in the occurrence of cognitive impairments in first‐degree relatives of people with BPD, despite evidence that cognitive impairments may be stable traits across symptomatic status in people with BPD. Conclusions: Research and treatment approaches developed for schizophrenia can productively be applied to the study and treatment of patients diagnosed with BPD, notably including studies of the characteristics of and treatments for functional impairment related to cognitive deficits.     

The Assessment of Decisional Capacity: Gender Differences,Corresponding Medical and Psychiatric Illness,and Their Impact on Decisional Capacity

To date, gender differences and decisional capacity have not been studied. Altogether, decisional capacity assessments were required twice as often for male than for female patients. While female patients more commonly had endocrine disorders, male patients more commonly had neurological disorders, which contributed to decisional capacity impairment. Psychiatrically, mood disorders were more common in women and substance use disorders in men. Regarding decisional capacity tasks, men more frequently requested to sign out against medical advice. Overall, the ability to make appropriate health care decisions did not vary between genders. Although more decisional capacity assessments were requested for male patients, the degree to which decisional capacity existed did not vary between genders. Male patients more often displayed substance use and neurological disorders and more frequently requested to sign out against medical advice. Cognitive disorders caused more impairment for men than for women.     

Current state of research on decision-making competence of cognitively impaired elderly persons.

As the number of cognitively impaired elderly persons increases, the need for evidence-based assessments of their capacity to consent to medical treatment and research participation will grow. The authors conducted an electronic and manual literature search for all English-language articles examining the decision-making capacity of elderly persons with dementia or cognitive impairment, reviewing articles in relation to key areas of methodological, clinical, and policy importance. The 32 relevant studies identified were highly heterogeneous, even in their definitions and measurements of decisional capacity. Although incapacity is common, many persons with dementia are capable of making their own medical and research decisions. In Alzheimer disease, memory and executive-function deficits predict decisional impairment. Still, at least in early stages of dementia, interventions may improve decisional abilities. Short and simple cognitive screening may be useful by identifying persons in need of more intensive evaluations. The use of expert judgment-based methods may mitigate the problem of a lack of a criterion standard for competence. Research into the decision-making competence of cognitively impaired elderly persons is a growing field. It is beginning to yield findings with practical implications for preserving the autonomy and welfare of this group of vulnerable elderly patients.     

Evidence-based psychotherapy for schizophrenia

Many patients with schizophrenia have psychological distress and receive some form of psychotherapy. Several different psychotherapeutic approaches for schizophrenia have been developed and studied. Of these approaches, cognitive behavior therapy has the strongest evidence base and has shown benefit for symptom reduction in outpatients with residual symptoms. In addition to cognitive behavior therapy, other approaches include compliance therapy, personal therapy, acceptance and commitment therapy, and supportive therapy. Although usually studied as distinct approaches, the therapies overlap with each other in their therapeutic elements. As psychotherapy for schizophrenia further evolves, it will likely be informed by other psychosocial interventions used with this clinical population. In particular, techniques of remediating cognitive deficits, teaching behavioral skills, and educating about schizophrenia may be incorporated with psychotherapy. Future research may also consider three different goals of psychotherapy with this population: to provide emotional support, to enhance skills for functional recovery, and to alter the underlying illness process.     

The relationship of the Brief Assessment of Cognition in Schizophrenia (BACS) to functional capacity and real-world functional outcome

The Brief Assessment of Cognition in Schizophrenia (BACS) assesses five different domains of cognitive function with six tests, and takes about 30-35 minutes to complete in patients with schizophrenia. Previous work has demonstrated the reliability of this measure, and its sensitivity to the deficits of schizophrenia. However, the relationship of this brief cognitive measure to functional outcome has not been determined. Further, future registration trials for potentially cognitive enhancing compounds may not only assess efficacy with cognitive performance measures, but with assessments of real-world functional outcome and functional capacity. The purpose of this study was to determine the relationship between the BACS and a potential co-primary measure for treatment studies of cognition in schizophrenia, and to determine if such a measure accounts for significant variance in functioning beyond that provided by cognitive function. The current study assessed 60 patients with schizophrenia over the course of six months. Cognitive functions were measured with the BACS. Functional capacity was measured with the UCSD Performance-based Skills Assessment (UPSA). Real-world functional outcome was measured with the Independent Living Skills Inventory (ILSI). BACS composite scores were significantly correlated with functional capacity as measured by the UPSA (r = .65, df = 55, p < .001), and real-world functional outcome as assessed by the ILSI (r = .37, df = 56, p = .005). In multiple regression analyses, UPSA scores did not account for additional variance in real-world functioning beyond that accounted for by the BACS. These data suggest that brief cognitive assessments such as the BACS are able to assess aspects of cognition that are related to important functional measures in clinical trials of cognitive enhancement. They also suggest that the measures being considered as potential co-primary indicators of cognitive function for registration trials are significantly correlated with cognition as assessed by brief cognitive assessments.     

Is there a need for admission and discharge cognitive screening for the medically ill?

The Cognitive Capacity Screening Examination, developed to detect cognitive deficits as possible manifestations of diffuse organic mental syndromes, was administered on admission and at discharge to 106 patients on a medical ward of a general hospital (mean age, 56 years). Thirty-three percent of the patients showed diminished cognitive capacity at admission, of which 16% were undetected by the house staff. Restudy at discharge revealed that 28% of the sample continued to have diminished cognitive capacity. This study documents the incidence of cognitive deficits, highlights the need for early detection, and offers practical considerations for discharge procedures.     

Treatment of Functional Impairment in Patients with Bipolar Disorder

Traditionally, functional impairment has received little attention in bipolar disorder, despite the fact that many patients experience significant impairments in daily life. In the last decade, research has changed its focus from clinical remission to functional recovery in bipolar patients as a priority. A literature review of this topic will allow us provide an overview of the relevance of functional impairment as well as the potential factors that can predict or contribute to low functioning in bipolar disorder (BD). Treatment approaches should consider not only euthymia as a goal but also cognitive and functional improvement of patients with such a complex disorder. Functional remediation and psychoeducation among psychological interventions may help to enhance functioning. The combination of cognitive enhancers and cognitive/functional remediation programs may help in improving cognitive and functional impairments. Early interventions are essential to prevent cognitive deficits and disability.     

The cognitive correlates of functional status: a review from the Committee on Research of the American Neuropsychiatric Association

This report reviews the state of the literature and opportunities for research related to the cognitive correlates of functional status. The prediction of functional capacity on the basis of cognitive test performance is an important aspect of neuropsychological assessment. Moreover, functional impairment or "disability" is an essential part of dementia case finding. Nevertheless, relatively little attention has been given to the empirical study of the specific cognitive correlates of functional outcomes. What literature is available suggests that 1) the variance in functional status that can be specifically attributed to cognition is surprisingly modest; 2) some cognitive domains may be more relevant to functional capacity than others; 3) some measures of executive control function are relatively strong correlates of functional capacities, particularly medical or financial decision-making; and 4) "general" cognitive screening tests are surprisingly strong correlates of functional status. These findings are of particular significance to dementia case finding, epidemiology, and treatment. The extensive literature on functional status has yet to be integrated with the equally extensive literature on cognitive assessment. Better integration of cognitive and functional assessments would offer greater clinical utility. However, psychometric batteries may have to be redesigned to maximize their capacity to capture the variance in functional outcomes.