Who gets to decide?: Substitute decision making following severe brain injury with communication impairment.

Purpose: In our prior study (Malhi et al., 2021), we demonstrated that cognitive ability may be masked by communication impairments. We used binary choice (i.e., yes/no) neuropsychological tests to assess cognitive functioning in four patients with severe brain injury and communication impairments. In this study, we aimed to better understand the decision-making process of their substitute decision makers (SDMs). Methods: We interviewed SDMs - two SDMs were supporting patients in the minimally conscious state, one SDM was supporting a patient who had locked-in syndrome and was an augmentative communication user, and the last SDM was supporting a patient who was an alternative communication user. Results: SDMs were performing various roles ranging from making all decisions to simply being the vocal advocate (for the augmentative and alternative communication users). SDMs described heuristics they used to make decisions, and all identified auditory comprehension capabilities as being an important element for decision making. Conclusion: We argue that if mode of communication is established and utilized, and binary choice neuropsychological tests are used to ascertain cognitive functioning, SDMs may more confidently make low/medium stakes decisions based on the present condition and context, rather than solely on past wishes and values before capacity was in question.

Thinking without speaking: Neuropsychological testing with individuals who have communication impairments.

Cognitive ability may be masked by communication impairments. This study aimed to assess cognitive functioning using binary choice (i.e., yes/no) neuropsychological tests in patients with communication impairments. Four participants underwent neuropsychological testing. Two participants were in the minimally conscious state (MCS), one participant had locked-in syndrome and was an alternative communication user, and one participant was an augmentative communication user. There was better performance in all cognitive domains for the augmentative and alternative communication (AAC) users (who performed like the non-communication impaired normative data) compared to the MCS participants. However, using established yes/no communication methods, MCS participants performed above chance on a measure of memory and performance on measures of auditory comprehension was variable. Auditory comprehension appeared to be more influenced by working memory demands for the MCS participants than for the AAC users. For emotional functioning, the AAC users endorsed lower mood compared to the MCS participants. The results support the need to assess cognition, communication, as well as capacity in individuals with communication impairments with the consultation of a neuropsychologist and a speech-language pathologist.

Assessing Decision-Making Capacity in Patients with Communication Impairments.

The ethical principle of autonomy requires physicians to respect patient autonomy when present, and to protect the patient who lacks autonomy. Fulfilling this ethical obligation when a patient has a communication impairment presents considerable challenges. Standard methods for evaluating decision-making capacity require a semistructured interview. Some patients with communication impairments are unable to engage in a semistructured interview and are at risk of the wrongful loss of autonomy. In this article, we present a general strategy for assessing decision-making capacity in patients with communication impairments. We derive this strategy by reflecting on a particular case. The strategy involves three steps: (1) determining the reliability of communication, (2) widening the bandwidth of communication, and (3) using compensatory measures of decision-making capacity. We argue that this strategy may be useful for assessing decision-making capacity and preserving autonomy in some patients with communication impairments.

Ethics of neuroimaging after serious brain injury.

BACKGROUND: Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict recovery, and this information would help families and health providers. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to "yes" or "no" answers, and cost. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. The objectives of this research are to: (1) create an approach to capacity assessment using neuroimaging; (2) develop an ethics of welfare framework to guide considerations of quality of life; (3) explore the impact of neuroimaging on families; and, (4) analyze the ethics of the use of neuroimaging in comatose patients. METHODS/DESIGN: Our research program encompasses four projects and uses a mixed methods approach. Project 1 asks whether decision making capacity can be assessed in behaviorally nonresponsive patients. We will specify cognitive functions required for capacity and detail their assessment. Further, we will develop and pilot a series of scenarios and questions suitable for assessing capacity. Project 2 examines the ethics of welfare as a guide for neuroimaging. It grounds an obligation to explore patients' interests, and we explore conceptual issues in the development of a quality of life instrument adapted for neuroimaging. Project 3 will use grounded theory interviews to document families' understanding of the patient's condition, expectations of neuroimaging, and the impact of the results of neuroimaging. Project 4 will provide an ethical analysis of neuroimaging to investigate residual cognitive function in comatose patients within days of serious brain injury.

Sahaj Samadhi meditation vs a Health Enhancement Program in improving late-life depression severity and executive function: study protocol for a two-site, randomized controlled trial.

BACKGROUND: Recent estimates suggest an 11% prevalence of current late-life depression (LLD) and a lifetime prevalence of 16-20%. LLD leads to cognitive disturbance as well as a nearly two to three times increased risk of dementia. We conducted a recent randomized controlled trial (RCT) which demonstrated that Sahaj Samadhi meditation (SSM), an easy-to-implement, meditation-based augmentation strategy, led to higher rates of symptom remission when compared to treatment as usual (40.0 vs 16.3%; odds ratio, 3.36; 95% CI 1.06-10.64; p = 0.040). Here we present a protocol describing a two-site, blinded, RCT, comparing an SSM arm to an active-control arm - a Health Enhancement Program (HEP) intervention - in their ability to reduce depressive symptoms and improve executive functioning, among several other exploratory outcomes. METHODS/DESIGN: One hundred and ninety-two (n = 192) participants with LLD will be recruited at two sites (London, ON, Canada, and Montreal, QC, Canada). Participants will undergo stratified randomization with regards to site and the presence of treatment-resistant-LLD (TR-LLD) or not, to either SSM or HEP. We will assess change in (1) depression severity using the Hamilton Depression Rating Scale (HAM-D), (2) executive functioning, and (3) other exploratory physiological and mood-based measures, at baseline (0 weeks), post intervention (12 weeks), and 26 weeks after baseline. Raters, clinicians, and care providers will be blinded to group allocation while participants will be blinded to the study hypotheses. DISCUSSION: This study should more definitively assess whether SSM can be used as an augmentation strategy in routine clinical care for patients suffering from LLD and TR-LLD. If the effects of SSM are significantly better than HEP, it will offer support for the routine use of this intervention to manage LLD/TR-LLD and comorbid declines in executive dysfunction. The results of this study could also inform whether SSM can improve/prevent cognitive decline in LLD. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03564041 . Registered on 20 June 2018.

Quality of life after septic illness.

PURPOSE: The study was undertaken to evaluate the quality of life of survivors of septic illness. MATERIALS AND METHODS: A questionnaire survey of survivors of septic illness (experimental group) and acute myocardial infarction (control group) was conducted using information from the Adult Neuropsychological History and the Sickness Impact Profile forms. Eight patients diagnosed with sepsis (using the Bone et al 1992 criteria [Bone RC, Sprung CL, Sibbald WJ. Crit Care Med 1992;20:724-726]) and 15 patients diagnosed with acute myocardial infarction participated in the study. RESULTS: On the Sickness Impact Profile, greater difficulty with work was reported in the sepsis group than in the cardiac control group (P < .04). When retired individuals were excluded from the analysis, individuals in the sepsis group reported more symptoms on the sensory, physical, and behavior sections of the Adult Neuropsychological History form and greater difficulty with sleep and rest, emotional behavior, body care and movement, and physical and psychosocial functioning on the Sickness Impact Profile. As well, more individuals in the sepsis than the control group endorsed symptoms related to problem solving, concentration, memory, sensory, and physical ability. CONCLUSIONS: Individuals surviving sepsis may have problems with physical, sensory, emotional, and cognitive functioning that become most apparent when involved in more challenging activities, such as working.