Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking.

BACKGROUND: Dysphagia and other eating and drinking difficulties are common in progressive neurological diseases. Mealtimes can become a major source of difficulty and anxiety for patients and their families. Decisions about eating, drinking and care can become challenging as disease progresses, and the person in question loses the capacity to participate in decisions about their own care. We sought to investigate how patients and their family members make decisions about their future care as their condition deteriorates, with a particular focus on mealtimes, eating and drinking. METHODS: Longitudinal qualitative in-depth interviews were undertaken with patients and their family members (N = 29) across a range of disease groups, including: dementia, Parkinson's Disease, Huntington's Disease, Progressive Supranuclear Palsy, Motor Neurone Disease, Multiple Sclerosis. Patients had varying degrees of eating and drinking difficulties, and levels of decision-making capacity. Interviews were 'participant led' and undertaken in the patients' own homes or a place of their choosing. Follow-up interviews were three months to one year later depending upon disease trajectory. Interviews were audio recorded and analysed in NVivo using a Thematic Analysis approach. RESULTS: Twenty-nine participants were interviewed between 2015 and 2017. Two key themes emerged from the analysis: 1) Health Literacy: the extent to which patients and relatives appeared to know about the condition and its treatment. Patients and their family members varied in their ability to speak and communicate about their condition and prognosis. 2) Planning style: the extent to which participants appeared to value involvement in advance care-planning. Patients and their family members varied in the way in which they made decisions: some preferred to 'take each day as it comes', while others wished to plan extensively for the future. CONCLUSIONS: Issues with eating and drinking are often overlooked. Clinicians need to understand both the patient's level of health literacy and their style of planning before communicating with patients and their families about these sensitive issues.

Healthcare leadership and applied philosophy: An essential resource.

As healthcare professionals we are committed to the efficient and effective operation of our institutions. Bureaucratic structures, rules, regulations, policies, and of course, measurements, are the tools-at-hand. While there is nothing inherently pernicious about efficient, effective, and measured institutions, we argue what is critically missing in this environment is humanity and authenticity at the cost of meaningful work. The solutions we offer are found in the realm of philosophy and in particular that branch of philosophy that deals with first principles - what is a nurse; what is a patient; what is a hospital?

Le leadership en santé et la philosophie appliquée : une ressource essentielle.

En qualité de professionnels de la santé, nous sommes déterminés à assurer l'exploitation efficiente et efficace de nos établissements. Les outils dont nous disposons sont les structures bureaucratiques, les règles, les règlements, les politiques et, bien sûr, les mesures. Il n'y a rien de foncièrement pernicieux à avoir des établissements efficients, efficaces et mesurés, mais nous soutenons que l'humanité et l'authenticité manquent cruellement dans cet environnement, au prix d'un travail significatif. Les solutions que nous proposons appartiennent au milieu de la philosophie, et particulièrement au secteur qui repose sur des principes fondamentaux : qu'est-ce qu'une infirmière, qu'est-ce qu'un patient, qu'est-ce qu'un hôpital?

In the lion's den? Experiences of interaction with research ethics committees.

Research ethics review is an important process, designed to protect participants in medical research. However, it is increasingly criticised for failing to meet its aims. Here, two researchers reflect on their experiences of applying for ethical approval of observational research in clinical settings. They highlight some problems faced by reviewers and researchers and propose a two-stage ethical review process that would alert researchers to the committee's concerns and allow them to give a more considered response.

The collaborative development through multidisciplinary and advocate consensus of an accessible notice of rights for people with intellectual disabilities in police custody.

Background People with intellectual disabilities are over-represented in the criminal justice system. The United Nations' Convention on the Rights of Persons with Disabilities (UNCRPD) enshrines a right to equal access to justice for persons with disabilities (Article 13, UNCRPD). Accessible information is a key aspect of exercising this right. Yet, many jurisdictions, including Ireland, are yet to develop accessible information for disabled people who may be arrested. Aims This paper describes the collaborative development through multidisciplinary and advocate consensus of an accessible (Easy -to- Read) Notice of Rights (ERNR) for people with intellectual disabilities in police custody in Ireland. Methods Guidelines developed by Ireland's representative organisation for people with intellectual disabilities and examples of international practice were used to develop a draft ERNR by the primary researcher in partnership with an expert from a representative organisation for people with intellectual disabilities. The ERNR was developed thereafter through two focus groups with a view to achieving consensus with a focus on accessibility, accuracy and layout. This included a multidisciplinary focus group with participants from a representative organisation for people with intellectual disabilities, psychology, speech and language therapy, the police force, public health, forensic psychiatry, mental health, law and, subsequently, a focus group of people with lived experience of intellectual disability. Results Progressive development of the ERNR resulted in incremental improvements in textual accuracy as well as the inclusion of more accessible language and imagery. Originality/value This is the first attempt at developing an easy-to-read document relating to the legal rights of suspects in police custody in Ireland and, accordingly, this procedural innovation promises to assist, not just persons with intellectual disabilities, but also those with limited literacy at the point of arrest. The methodology used in the preparation of the document, employing a focus group to achieve consensus with participation from both multiple disciplines and persons with an intellectual disability, is in harmony with the ethos of the UNCPRD. This methodology may usefully be employed by other member states that have ratified the Convention but have yet to develop accessible version of the legal rights and entitlements that extend to arrested persons under their domestic law.

A scoping review of case law relating to support and treatment for people with Prader-Willi Syndrome.

BACKGROUND: Prader-Willi Syndrome (PWS) is a complex multisystem genetic disorder associated with several challenges for people with PWS themselves, and for their families and care givers. Support around access to food is a particular issue due to impaired satiety and, because of this, people with PWS eat excessive amounts of food (hyperphagia). Together with other aspects of the PWS phenotype including, in many cases, a reduced sensitivity to pain, hyperphagia results in life-threatening obesity and life-shortening complications for some people with PWS. Restrictions to liberty and/or access to food raise important legal and ethical considerations in the clinical management of children and adults with PWS. Particularly where disagreements arise and, in the absence of comprehensive guidance for care providers, the courts may be called upon to resolve these difficult issues. AIMS: 1) To review case-law from English-speaking common law jurisdictions concerning support arrangements for people with PWS with a view to identifying issues that have required the intervention of the courts. 2) To identify principles on which to base clinical guidelines relating to the issues identified, ensuring that such guidelines are consistent with ethical and human rights imperatives. METHODS: Westlaw, Westlaw AU, and Lexis Nexis were searched for case law concerning the treatment or support of a person with PWS. RESULTS: Fifteen cases from jurisdictions in Australia, New Zealand, Canada, the United Kingdom and the United States of America met inclusion criteria. Areas requiring judicial decision making included a) detention in psychiatric hospital; b) support in least restrictive environments c) eligibility for support services; d) guardianship; e) access to special education. Judicial decisions are discussed in the context of the United Nations' Convention on the Rights of Persons with Disabilities.

Using a Scenario-Based Approach to Teaching Professionalism to Medical Students: Course Description and Evaluation.

BACKGROUND: Doctors play a key role in individuals' lives undergoing a holistic integration into local communities. To maintain public trust, it is essential that professional values are upheld by both doctors and medical students. We aimed to ensure that students appreciated these professional obligations during the 3-year science-based, preclinical course with limited patient contact. OBJECTIVE: We developed a short scenario-based approach to teaching professionalism to first-year students undertaking a medical course with a 3-year science-based, preclinical component. We aimed to evaluate, both quantitatively and qualitatively, student perceptions of the experience and impact of the course. METHODS: An interactive professionalism course entitled Entry to the Profession was designed for preclinical first-year medical students. Two scenario-based sessions were created and evaluated using established professionalism guidance and expert consensus. Quantitative and qualitative feedback on course implementation and development of professionalism were gathered using Likert-type 5-point scales and debrief following course completion. RESULTS: A total of 70 students completed the Entry to the Profession course over a 2-year period. Feedback regarding session materials and logistics ranged from 4.16 (SD 0.93; appropriateness of scenarios) to 4.66 (SD 0.61; environment of sessions). Feedback pertaining to professionalism knowledge and behaviors ranged from 3.11 (SD 0.99; need for professionalism) to 4.78 (SD 0.42; relevance of professionalism). Qualitative feedback revealed that a small group format in a relaxed, open environment facilitated discussion of the major concepts of professionalism. CONCLUSIONS: Entry to the Profession employed an innovative approach to introducing first-year medical students to complex professionalism concepts. Future longitudinal investigations should aim to explore its impact at various stages of preclinical, clinical, and postgraduate training.

Challenges for people with intellectual disabilities in law enforcement interactions in Ireland; thematic analysis informed by 1537 person-years' experience.

BACKGROUND: People with intellectual disabilities (PWID) are over-represented in criminal justice systems globally. This over-representation reveals itself at once in the demographic make-up of prison populations, as well as those detained in police settings as suspects of crime. While it is well-established in international literature that individuals who find themselves in the latter scenario face particular challenges in negotiating the forensic formalities routinely followed by the police at the pre-trial stage of criminal proceedings on account of their impairments, the specific difficulties experienced by PWID as suspects within Ireland's criminal justice system has yet to be explained, or indeed, understood. In seeking to address this research lacuna, this paper yields an account of a qualitative study which was aimed at identifying the unique challenges which PWID face in their interactions with Law Enforcement Officials (LEOs) in Ireland. AIMS: This study aimed to elicit perspectives across a range of disciplines with regard to barriers for PWID interacting with LEOs in Ireland, and sought viewpoints on the content of a proposed awareness programme. METHODS: A survey using purposive sampling was used to elicit viewpoints from people from representative organisations for PWID, people working with voluntary organisations for PWID, healthcare professionals working with PWID and professionals from the criminal justice system (including members of An Garda Siochana, lawyers, members of the Irish judiciary and officials within the Airport Police). Data were anonymised at the point of collection. Qualitative thematic analysis was conducted to extract themes based on the data retrieved through the survey. RESULTS: Ninety-five (n = 95) responses were received from individuals reporting a cumulative experience of 1537 person-years. Respondents identified themselves as members of one of three groups; people working in a voluntary or representative organisation for PWID (n = 42, 44.2%); people working in healthcare (n = 31, 32.6%); and people working in law enforcement (n = 22, 23.1%). Three themes were identified from the qualitative thematic analysis. The first theme, "Barriers to Communication", identified challenges which PWID and LEO experience in their mutual interactions and communications with one another. The second theme, "Building Awareness and Skills", identified elements of an ID awareness programme for LEOs. The third theme, "Institutional and System Change", identified possible lines of innovation with respect to contemporary police practice and the availability of supports for both PWID and the LEOs who work with them. ORIGINALITY/VALUE: This study represents the first dedicated qualitative inquiry conducted on a multidisciplinary level into the barriers which healthcare professionals, legal professionals and disability advocacy groups perceive to be faced by PWID in their interactions with LEOs in Ireland. Consequently, the findings from this study will act as a valuable template in the direction of informing the development of an ID awareness programme for LEOs in Ireland. In addition, these research findings are expected to usefully inform the development of national policy and protocols in areas related to health, disability and justice. In offering a rich evidence-base for future policy initiatives, the timing of this study is particularly significant. The recent ratification by Ireland of the UN Convention for the Rights of People with Disabilities (UNCRPD), together with the synchronous emergence of an evolving emphasis on human rights-based policing at a national level in Ireland, has meant that Irish policymakers have a unique opportunity to re-imagine the pre-trial formalities of Ireland's criminal process in order to demonstrate an increased sensitivity to the needs of PWID. Securing equal access to justice for such individuals, it is important to emphasise, is a legal requirement pursuant to Article 13 of the UNCRPD. To the extent therefore that this study yields unique insights into the barriers faced by PWID in their interactions with LEOs, the results of this study are potentially generalisable to other jurisdictions that have ratified the UNCRPD and are developing policy to accord with Article 13.

Case-based seminars in medical ethics education: how medical students define and discuss moral problems.

Discussion of real cases encountered by medical students has been advocated as a component of medical ethics education. Suggested benefits include: a focus on the actual problems that medical students confront; active learner involvement; and facilitation of an exploration of the meaning of their own values in relation to professional behaviour. However, the approach may also carry risks: students may focus too narrowly on particular clinical topics or show a preference for discussing legal problems that may appear to have clearer solutions. Teaching may therefore omit areas generally considered to be important components of the curriculum. In this paper, the authors present an analysis of the moral problems raised by medical students in response to a request to describe ethically problematic cases they had encountered during two clinical attachments, for the purpose of educational discussion at case-based seminars. We discuss the problems raised and compare the content of the cases to the UK Consensus Statement on core content of learning. The authors also describe the approaches that the students used to undertake an initial analysis of the problems raised, and consider possible implications for the development of medical ethics education.

Articulating future directions of law reform for compulsory mental health admission and treatment in Hong Kong.

This article explores and outlines four possible pathways for law reform in the area of compulsory mental health admission and treatment in Hong Kong: the (i) abolition, (ii) risk of harm, (iii) mental capacity and (iv) consensus pathways. The discussion of each pathway takes into account local challenges in implementation, as well as Hong Kong's international commitments for the protection of rights. In outlining these pathways for reform, the authors intend to also provide a blueprint for regulatory change in other jurisdictions that are in the process of reforming their mental health laws.

Intellectual disability in Irish prisoners: systematic review of prevalence.

Purpose While individuals with an intellectual disability form a significant minority in the worldwide prison population, their healthcare needs require specialist attention. In Ireland, services for prisoners with intellectual disabilities need development. However, there is little substantive data estimating the prevalence of intellectual disabilities within the Irish prison system. The paper aims to discuss these issues. Design/methodology/approach The authors systematically review published data relating to the prevalence of intellectual disabilities in prisons in the Republic of Ireland. The authors searched four databases, governmental websites and corresponded with experts. Findings Little published data were elicited from searches except for one nationwide cross-sectional survey which reflected a higher prevalence than reported in international studies. Studies from forensic mental health populations are narrated to contextualise findings. Originality/value This study found that there is little data to accurately estimate the prevalence of intellectual disabilities in the Irish prison system and the limited data available suggests that this is likely to be higher than international estimates. The authors highlight the need for further research to accurately estimate prevalence in this jurisdiction, alongside the need to develop screening and care pathways for prisoners with an intellectual disability.

A novel care pathway for prisoners with intellectual disability designed through a Delphi process.

PURPOSE: Individuals with an intellectual disability (ID) form a significant minority in the Irish prison population and worldwide prison populations. There is growing recognition that specialist services for such individuals are in need of development. The purpose of this paper is to propose a care pathway for the management of individuals with an ID who present in prison, based on expert elicitation and consensus. DESIGN/METHODOLOGY/APPROACH: A convenience sample of professionals with a special interest in forensic intellectual disabilities was invited to participate in a Delphi exercise. In total, 12 agreed to participation and 10 subsequently completed the study (83.3 per cent). Expert views were elicited using a semi-structured questionnaire. Content analysis was completed using NVivo 11 software. A care pathway was subsequently proposed, based on the outcomes of the analysis, and circulated to participants for debate and consensus. A consensus was reached on management considerations. FINDINGS: Ten experts across a range of disciplines with a combined experience of 187 years participated in the study. Current provision of care was seen as limited and geographically variable. The vulnerability of prisoners with ID was highlighted. The need for equivalence of care with the community through multidisciplinary input and development of specialist secure and residential placements to facilitate diversion was identified. Consensus was achieved on a proposed care pathway. ORIGINALITY/VALUE: This study proposes a care pathway for the assessment and management of prisoners with an ID and is, therefore, potentially relevant to those interested in this topic internationally who may similarly struggle with the current lack of decision-making tools for this setting. Although written from an Irish perspective, it outlines key considerations for psychiatrists in keeping with international guidance and, therefore, may be generalisable to other jurisdictions.

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States.

BACKGROUND: There is continuing public debate about treatment preferences at the end of life, and the acceptability and legal status of treatments that sustain or end life. However, most surveys use binary yes/no measures, and little is known about preferences in neurological disease when decision-making capacity is lost, as most studies focus on cancer. This study investigates changes in public preferences for care towards the end of life, with a focus on measures to sustain or end life. METHODS: Large-scale international public opinion surveys using a six-stage patient vignette, respondents chose a level of intervention for each stage as health and decision-making capacity deteriorated. Cross-sectional representative samples of the general public in Great Britain and the USA (N = 2016). Primary outcome measure: changes in respondents' preferences for care, measured on a four-point scale designed before data collection. The scale ranged from: maintaining life at all costs; to intervention with agreement; to no intervention; to measures for ending life. RESULTS: There were no significant differences between GB and USA. Preference for measures to sustain life at all costs peaked at short-term memory loss (30.2%, n = 610). Respondents selecting 'measures to help me die peacefully' increased from 3.9% to 37.0% as the condition deteriorated, with the largest increase occurring when decision-making capacity was lost (10.3% to 23.0%). Predictors of choosing 'measures to help me die peacefully' at any stage were: previous personal experience (OR = 1.34, p<0.010), and older age (OR = 1.09 per decade, p<0.010). Negative predictors: living with children (OR = 0.72, p<0.010) and being of "black" race/ethnicity (OR = 0.45, p<0.001). CONCLUSIONS: Public opinion was uniform between GB and USA, but markedly heterogeneous. Despite contemporaneous capacitous consent providing an essential legal safeguard in most jurisdictions, there was a high prevalence of preference for "measures to end my life peacefully" when decision-making capacity was compromised, which increased as dementia progressed. In contrast, a significant number chose preservation of life at all costs, even in end stage dementia. It is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity.

Tensions between policy and practice: A qualitative analysis of decisions regarding compulsory admission to psychiatric hospital.

The use of detention for psychiatric treatment is widespread and sometimes necessary. International human rights law requires a legal framework to safeguard the rights to liberty and personal integrity by preventing arbitrary detention. However, research suggests that extra-legal factors may influence decisions to detain. This article presents observational and interview data to describe how decisions to detain are made in practice in one jurisdiction (England and Wales) where a tension between policy and practice has been described. The analysis shows that practitioners mould the law into 'practical criteria' that appear to form a set of operational criteria for identifying cases to which the principle of soft paternalism may be applied. Most practitioners also appear willing, albeit often reluctantly, to depart from their usual reliance on the principle of soft paternalism and authorise detention of people with the capacity to refuse treatment, in order to prevent serious harm. We propose a potential resolution for the tension between policy and practice: two separate legal frameworks to authorise detention, one with a suitable test of capacity, used to enact soft paternalism, and the other to provide legal justification for detention for psychiatric treatment of the small number of people who retain decision-making capacity but nonetheless choose to place others at risk by refusing treatment. This separation of detention powers into two systems, according to the principle that justifies the use of detention would be intellectually coherent, consistent with human rights instruments and, being consistent with the apparent moral sentiments of practitioners, less prone to idiosyncratic interpretations in practice.