Brain-Computer Interfaces, Completely Locked-In State in Neurodegenerative Diseases, and End-of-Life Decisions.

In the future, policies surrounding end-of-life decisions will be faced with the question of whether competent people in a completely locked-in state should be enabled to make end-of-life decisions via brain-computer interfaces (BCI). This article raises ethical issues with acting through BCIs in the context of these decisions, specifically self-administration requirements within assisted suicide policies. We argue that enabling patients to end their life even once they have entered completely locked-in state might, paradoxically, prolong and uphold their quality of life.

Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study.

OBJECTIVE: This study explores the supportive needs of informal caregivers of people with amyotrophic lateral sclerosis (ALS) in Switzerland. METHOD: We conducted semi-structured interviews with nine informal caregivers currently providing care to a person with ALS, 14 bereaved informal caregivers, and 13 healthcare professionals. Interviews were recorded on digital audio and analysed using an inductive thematic analysis within a realist framework. RESULT: Informal caregivers discussed five themes of support needs relating to being overburdened by administrative demand, in contact with healthcare providers, home support, especially during the terminal phase, and having or lacking social support. Healthcare professionals discussed three themes of support needs of informal caregivers which related to the general institutional support for informal caregivers, their own work as caring for informal caregivers, and the challenges in healthcare for families with ALS they encountered. SIGNIFICANCE OF RESULTS: Informal caregiving for people with ALS can be demanding. This study provides evidence for improvements in supporting informal caregivers. It shows administrative needs of informal caregivers, stresses their needs regarding advance care planning early in the context of ALS, and underlines the importance of social support, be it in peer-groups or community care.

"Walking a tightrope": A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis.

Informal caregivers, mainly family members and friends, provide supportive and palliative care for people with amyotrophic lateral sclerosis (ALS) during their terminal disease course. Informal caregiving for people with ALS continues towards palliative care and end-of-life care with the progression of the disease. In this study, we provide a theoretical understanding of informal caregiving in ALS utilising 23 semi-structured interviews conducted with informal caregivers of people with ALS (pwALS) in Switzerland. Due to the expected death of the care recipient, our grounded theory approach outlines informal caregivers' caregiving work as an effort to secure a balance amongst different caregiving activities, which feed into the final stage of providing palliative care. Overall, our theoretical understanding of ALS informal caregiving work encompasses the core category 'holding the balance' and four secondary categories: 'Organising support', 'being present', 'managing everyday life' and 'keeping up with ALS'. The core category of holding the balance underlines the significance of ensuring care and normalcy even as disease progresses and until the end of life. For the informal caregivers, this balancing act is the key element of care provision to pwALS and therefore guides decisions surrounding caregiving. On this understanding, those caregivers that succeed in holding the balance can provide care at home until death. The balance is heavily influenced by contextual factors of caregiving, for example relating to personal characteristics of the caregiver, or activities of caregiving where the goal is to ensure the quality of life of the pwALS. As there is a heterogeneity of speed and subtype of progression of ALS, our work accounts for multiple caregiving trajectories.

Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study.

Informal caregivers provide the major part of care for persons with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disease. Apart from providing care, informal caregivers are themselves in need of support to fulfill the task of daily caregiving and to reduce their burden of caregiving. This need for support does not end with the death of the person cared for. In this study, we explore the themes of bereavement and support experience of informal caregivers of persons with ALS from interviews conducted with bereaved informal caregivers (n = 14) in Switzerland. Three key themes were salient in our data: Reacting to bereavement, finding support, and adjusting to life without the person with ALS. These themes are contrasted with themes from interviews (n = 11) with healthcare professionals (nurses, therapists, physicians) who care for patients and families with ALS. The themes described were offering support and identifying gaps in the support. We discuss support after bereavement for informal caregivers of persons with ALS in the established public health model of bereavement support. Bereavement support needs to be proactive from healthcare professionals; however, it requires the goodness of fit to address those in need and not those who are adequately supported by informal sources of support.

Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review.

BACKGROUND: Informal caregivers of people with amyotrophic lateral sclerosis (ALS) experience a range of needs across the course of the disease. For the provision of adequate support, an examination of the empirical evidence is necessary. AIM: The purpose of the systematic review was to synthesize evidence of needs of informal caregivers of people with ALS at different stages of caregiving. METHOD: Systematic review of empirical research on needs of ALS informal caregivers in both English and German, from January 2000 to August 2018. We searched the databases EMBASE, MEDLINE (PubMed), PsycINFO, and CINAHL. Study selection, quality assessment, and data extraction was performed independently. Both quantitative and qualitative studies were included. Of the included studies, we additionally screened citing literature in Google Scholar (citation tracking). We linked the narrative synthesis to four stages of caregiving described by Williams and colleagues and used descriptive inductive thematic analysis to structure data within the stages. RESULTS: From 3275 abstracts screened, 48 manuscripts met our inclusion criteria. Our data analysis shows that needs differ across the four caregiving stages. While the stage of bereavement (stage 4) includes too little data for separate themes, themes for needs after diagnosis (stage 1), and terminal stage (stage 3) could be specified. As the maintenance (stage 2) stage comprised of themes relevant across the caregiving course, it became an overall stage. DISCUSSION: Healthcare professionals need to pay attention to current caregiving stages to provide support for informal caregivers. Further research is needed to tease out support needs for the bereavement phase.

Evaluation of decision-making capacity in patients with dementia: challenges and recommendations from a secondary analysis of qualitative interviews.

BACKGROUND: Evaluation of decision-making capacity to consent to medical treatment has proved to be difficult in patients with dementia. Studies showed that physicians are often insufficiently trained in the evaluation of decision-making capacity. In this study, we present findings from a secondary analysis of a qualitative interviews with physicians. These interviews were initially used to assess usability of an instrument for the evaluation of decision-making capacity. By looking at difficult cases of decision-making capacity evaluation in patients with dementia, we provide recommendations for such evaluations in clinical practice. METHODS: We used thematic coding to analyse physicians' narratives of problematic decision-making capacity evaluations in patients with dementia to uncover challenging issues of decision-making capacity evaluation. RESULTS: In this study, decision-making capacity evaluations in patients with dementia were mainly perceived as challenging when they pertained to treatment refusals and treatment unrelated circumstances, such as psychiatric consultation, advance directives, and new living arrangements. Furthermore, the physicians reported training needs regarding situation-independent challenges with decision-making capacity evaluation. CONCLUSIONS: Upon further examining self-reported training needs and challenging cases, we have developed recommendations to improve decision-making capacity evaluations in clinical practice. In these recommendations, we argue that being able to evaluate decision-making capacity is an integral part of the informed consent process.

Hopelessness in palliative care for people with motor neurone disease: Conceptual considerations.

The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. Rather, pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder.

Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects.

BACKGROUND: Digital Pills (DP) are an innovative drug-device technology that permits to combine traditional medications with a monitoring system that automatically records data about medication adherence as well as patients' physiological data. Although DP are a promising innovation in the field of digital medicine, their use has also raised a number of ethical concerns. These ethical concerns, however, have been expressed principally from a theoretical perspective, whereas an ethical analysis with a more empirically oriented approach is lacking. There is also a lack of clarity about the empirical evidence available concerning the application of this innovative digital medicine. METHODS: To map the studies where DP have been tested on patients and discuss the ethically relevant issues evident therein, we performed a scoping review of the empirical literature concerning DP. RESULTS: Our search allowed us to identify 18 papers reporting on studies where DP were tested on patients. These included studies with different designs and involving patients with a variety of conditions. In the empirical literature, a number of issues with ethical relevance were evident. At the patient level, the ethical issues include users' interaction with DP, personal sphere, health-related risks and patients' benefits. At the provider level, ethically relevant issues touch upon the doctor-patient relationship and the question of data access. At the societal level, they concern the benefits to society, the quality of evidence and the dichotomy device-medicine. CONCLUSIONS: We conclude that evidence concerning DP is not robust and that more research should be performed and study results made available to evaluate this digital medicine. Moreover, our analysis of the ethically relevant aspects within empirical literature underscores that there are concrete and specific open questions that should be tackled in the ethical discussion about this new technological solution.

Edivoxetine compared to placebo as adjunctive therapy to selective serotonin reuptake inhibitors in the prevention of symptom re-emergence in major depressive disorder.

OBJECTIVE: When patients with major depressive disorder (MDD) are partial responders to antidepressant therapy, adjunctive treatment with an agent that has a different mode of action may provide additional benefit. We investigated the efficacy of edivoxetine, a highly selective norepinephrine reuptake inhibitor (NRI), as adjunctive treatment to selective serotonin reuptake inhibitors (SSRIs) in the prevention of re-emergence of depressive symptoms in patients with MDD (ClinicalTrials.gov identifier: NCT01299272). METHODS: Adult outpatients with MDD who were partial responders to SSRI treatment (N = 1249) entered an open-label 8 week flexibly dosed (12-18 mg/day) adjunctive edivoxetine period. Patients who achieved remission (Montgomery-Åsberg Depression Rating Scale total score ≤10 at week 8) entered a 12 week open-label fixed-dose (12 mg or 18 mg/day) stabilization period, and those still in remission at each of weeks 18, 19, and 20 were randomized to continue treatment at the same dose of edivoxetine or switch to placebo for a 24 week double-blind withdrawal period. All patients remained on SSRI therapy throughout the study. The primary outcome was time to re-emergence of depressive symptoms during double-blind withdrawal. RESULTS: Two hundred and ninety-four patients were randomized to continue adjunctive edivoxetine and 292 were switched to adjunctive placebo. Comparing adjunctive edivoxetine with adjunctive placebo, differences were not significant for time to re-emergence of symptoms (Kaplan-Meier log-rank p = 0.485), rates of symptom re-emergence (9.9% vs 8.2%, p = 0.565) or rates of sustained remission (75.4% vs 76.7%, p = 0.771). Treatment-emergent adverse events were consistent with the noradrenergic mechanism of action. CONCLUSIONS: Edivoxetine failed to demonstrate superiority vs placebo as adjunctive treatment in the prevention of symptom re-emergence during maintenance treatment in SSRI partial responders with MDD. While no selective NRIs are approved for adjunctive treatment to SSRIs in MDD, the use of NRIs in this population is nonetheless accepted practice, but our data do not support the efficacy of this approach.

Cognitive functioning and postconcussive symptoms in trauma patients with and without mild TBI.

Although there is a large body of research on mild traumatic brain injury (MTBI), the portion that pertains to acute patients (those less than 1 month postinjury) is relatively small and yields inconsistent findings. The potential contribution of non-neurological factors, such as pain and emotional distress, to the clinical picture in this population is also lacking. To address these issues, the cognitive performance and symptom complaints of 37 hospitalized MTBI subjects were compared to those of 39 hospitalized trauma subjects, averaging 4.5 days postinjury. MTBI subjects performed significantly worse on all cognitive measures, but did not differ from trauma subjects in their report of postconcussive symptoms. Analyses also revealed that cognitive performance was unrelated to pain severity and emotional distress. Postconcussive symptoms were similarly unrelated to pain severity, but were consistently related to emotional distress. Results are discussed in terms of their etiological and treatment implications.