NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence.

In 2021, the National Institute for Health and Care Excellence produced an evidence-based guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling long-term condition of unknown cause. The guideline provides clear support for people living with ME/CFS, their families and carers, and for clinicians. A recent opinion piece published in the journal suggested that there were anomalies in the processing and interpretation of the evidence when developing the guideline and proposed eight areas where these anomalies were thought to have occurred. We outline how these opinions are based on a misreading or misunderstanding of the guideline process or the guideline, which provides a balanced and reasoned approach to the diagnosis and management of this challenging condition.

Oregon Death with Dignity Act access: 25 year analysis.

OBJECTIVES: Assisted dying has been legally available in Oregon in the USA for 25 years, since when official reports have been published each year detailing the number of people who have used this option as well as sociodemographic and information about the process. The aim of this study was to examine changes over time in these data. METHODS: We collated and reviewed data on 2454 assisted deaths included in annual reports on assisted deaths published by the Oregon Health Authority from 1998 to 2022. Descriptive statistics were used to describe time trends. RESULTS: The number of assisted deaths in Oregon increased from 16 in 1998 to 278 in 2022. Over this time, patients' health funding status changed from predominantly private (65%) to predominantly government support (79.5%), and there was an increase in patients feeling a burden and describing financial concerns as reasons for choosing an assisted death. There has been a reduction in the length of the physician-patient relationship from 18 weeks in 2010 to 5 weeks in 2022, and the proportion referred for psychiatric assessment remains low (1%). Data are frequently missing, particularly around complications. CONCLUSIONS: The number and characteristics of people accessing assisted deaths, and the process, have changed since data collection started in 1998. Prospective studies are needed to examine the relationship between socioeconomic factors and the desire for an assisted death in Oregon.

Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021).

BACKGROUND: Euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) scrutinise all Dutch cases of euthanasia and physician-assisted suicide (EAS) to review whether six legal 'due care' criteria are met, including 'unbearable suffering without prospect of improvement'. There are significant complexities and ethical dilemmas if EAS requests are made by people with intellectual disabilities or autism spectrum disorders (ASD). AIMS: To describe the characteristics and circumstances of people with intellectual disabilities and/or ASD who were granted their EAS request; investigate the main causes of suffering that led to the EAS request; and examine physicians' response to the request. METHOD: The online RTE database of 927 EAS case reports (2012-2021) was searched for patients with intellectual disabilities and/or ASD (n = 39). Inductive thematic content analysis was performed on these case reports, using the framework method. RESULTS: Factors directly associated with intellectual disability and/or ASD were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons for the EAS request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was 'no prospect of improvement' as ASD and intellectual disability are not treatable. CONCLUSIONS: Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.

Assisted dying and medical practice: questions and considerations for healthcare organisations.

OBJECTIVES: Most clinical teams and organisations have not openly or formally discussed how they would react if physician-assisted suicide were to be legalised. This paper aims to discuss some of the potential challenges of introducing 'assisted dying' into medical care and produces a table of questions and considerations in light of such evidence so as to promote necessary discussion. METHODS: An analysis of recent quantitative and qualitative studies from jurisdictions where 'assisted dying' is practised was conducted, with particular attention paid to studies which focus on the impact of legalising 'assisted dying' on clinical care. RESULTS: 'Assisted dying' can have a significant impact on clinical practice by complicating patient care and increasing clinician workload, potentially causing stress on patient care. CONCLUSIONS: If physician-assisted suicide was to be legalised as part of existing healthcare, there are many questions that healthcare organisations must consider. Such considerations are tabulated in order to encourage awareness and discussion on the topic.

Comparison of official reporting on assisted suicide and euthanasia across jurisdictions.

OBJECTIVES: Official data reports from countries where assisted suicide and euthanasia is legal are an important resource for discerning participation rates, patient safety and transparency in the way that assisted dying is legal. We aimed to identify what information is published in official data reports on assisted suicide and euthanasia across jurisdictions. METHODS: We searched for official data reports from every jurisdiction where assisted suicide or euthanasia is legal. Searches were conducted on these countries' official health authority websites as well as on mainstream search engines. The data measures included within each report were described in four categories: participation data, patient characteristics, clinician characteristics, and drugs and dying process. RESULTS: We found that 16 jurisdictions where assisted suicide or euthanasia is currently legal regularly publish data reports regarding its practice. The information included within these official reports varies greatly, with few measures published across all or most jurisdictions. CONCLUSIONS: Differences in the kinds of information published within official reports on assisted suicide and euthanasia makes comparing the practice of assisted suicide and euthanasia across jurisdictions challenging. Many jurisdictions fail to report data measures, which could be valuable to the understanding of assisted suicide and euthanasia practices within that country. Improving data reporting across jurisdictions where assisted suicide and euthanasia is legal, for example, through establishing minimum requirements for data collection and reporting, is an important step towards ensuring patient safety and the transparent practice of assisted suicide and euthanasia.

Efficacy and safety of drugs used for 'assisted dying'.

BACKGROUND: 'Assisted dying' is practiced in some European countries and US states. Legislation suggests that there exists an easily prescribed drug which consistently brings about death quickly and painlessly. Evidence from jurisdictions where 'assisted dying' is practiced, however, reveals that hastening patient death is not so simple. SOURCES OF DATA: This report is a collation of assisted suicide and euthanasia drug protocols published by the Canadian Association of MAiD Assessors and Providers and the Royal Dutch Medical Association, annual data reports from the USA and Canada and relevant academic publications pertaining to methods of 'assisted dying' in the USA, Belgium, Canada and Switzerland. AREAS OF AGREEMENT: A wide variety of lethal drug combinations are used for people who want their life ended, and the prevalence of complications and failures in intentionally ending life suggest that 'assisted dying' applicants are at risk of distressing deaths. AREAS OF CONTROVERSY: The efficacy and safety of 'assisted dying' drugs are currently difficult to assess, as clinician reporting is often very low. GROWING POINTS: The findings from this report reveal that little attention has been given to the problem of unmonitored prescribing and administering of lethal drug combinations, whose mode of action is unclear. AREAS TIMELY FOR DEVELOPING RESEARCH: In order to properly assess the efficacy and safety of 'assisted dying', a more thorough means of data collection regarding the drugs used must be implemented and research is urgently needed into their mode of action.

Is UNESCO's Undergraduate Bioethics Integrated Curriculum (Medical) fit for purpose?

In 2017, UNESCO introduced an Undergraduate Bioethics Integrated Curriculum to be taught in Indian medical schools, with an implied suggestion that it could subsequently be rolled out to medical schools in UNESCO's other member states. Its stated aim is to create ethical awareness from an early stage of a doctor's training by infusing ethics instructions throughout the entire undergraduate medical syllabus. There are advantages to a standardised integrated curriculum where none existed. However, the curriculum as presently drafted risks failing to achieve its laudable aims. There are important lessons to be drawn from UNESCO's First Syllabus for Youth Bioethics Education (2018), which is aimed at schoolchildren and teenagers, and represents a creative, effective and culturally sensitive way to teach bioethics.

Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study.

BACKGROUND: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design. METHODS: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically. RESULTS: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions. CONCLUSIONS: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.

Talk CPR - a technology project to improve communication in do not attempt cardiopulmonary resuscitation decisions in palliative illness.

BACKGROUND: A national Do Not Attempt Cardiopulmonary Resuscitation policy was rolled out for the National Health Service in Wales in 2015. A national steering group led on producing information videos and a website for patients, carers and healthcare professionals, forming part of a quality improvement program. Videos were planned, scripted and produced with healthcare professionals and patient/carer representatives, and were completed with both English and Welsh language versions. The TalkCPR videos encourage and promote open discussion about Cardiopulmonary Resuscitation (CPR) and DNACPR in palliative care situations. METHODS: We worked with patient/carer groups to evaluate whether video resources to convey the salient facts involved in CPR and DNACPR decisions for people with palliative and life-limiting illness were acceptable or not. We conducted a mixed-method design service review in five phases to evaluate whether this technological resource could help. After creating video and website materials, they were evaluated by doctors, nurses and a patient/carer group. We also sent out one lightweight TalkCPR video media pad to each practice in Wales. These rechargeable electronic video media pads had communication videos pre-loaded for easy viewing, especially in areas with poor roaming data coverage. RESULTS: Videos were demonstrably acceptable to both patient and carer groups, and improved healthcare professional confidence and understanding. Videos went live on the TalkCPR website, in all Welsh Health Boards and on Youtube, and are now used in routine practice throughout Wales. CONCLUSION: This is the first time that DNACPR information videos are aimed directly at palliative care patients and carers, to explore this sensitive subject with them, and to encourage them to approach their doctor or nurse about it. The website, app and video media pads were developed by patients, the Digital Legacy Association, Welsh NHS IT services, Welsh Government, the Bevan Commission and the Dying Matters Charity in Wales 'Byw Nawr'. The GMC, the Royal College of General Practitioners and NICE have listed TalkCPR as a learning resource. There has also been a collaboration with Falmouth University Art College, who helped produce graphic designs to facilitate and encourage discussions about CPR and end of life care.

Physician-Assisted Suicide: Why Neutrality by Organized Medicine Is Neither Neutral Nor Appropriate.

It has been proposed that medical organizations adopt neutrality with respect to physician-assisted suicide (PAS), given that the practice is legal in some jurisdictions and that membership is divided. We review developments in end-of-life care and the role of medical organizations with respect to the legalization of PAS since the 1990s. We argue that moving from opposition to neutrality is not ethically neutral, but a substantive shift from prohibited to optional. We argue that medical organizations already oppose many practices that are legal in many jurisdictions, and that unanimity among membership has not been required for any other clinical or ethical policy positions. Moreover, on an issue so central to the meaning of medical professionalism, it seems important for organized medicine to take a stand. We subsequently review the arguments in favor of PAS (arguments from autonomy and mercy, and against the distinction between killing and allowing to die (K/ATD)) and the arguments against legalization (the limits of autonomy, effects on the patient-physician relationship, the meaning of healing, the validity of the K/ATD distinction, the social nature of suicide, the availability of alternatives, the propensity for incremental extension, and the meaning of control). We conclude that organized medicine should continue its opposition to PAS.

Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016).

BACKGROUND: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. METHODS: The 416 case summaries available on the RTE website (2012-2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases. RESULTS: Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient's perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. CONCLUSIONS: Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.

Commissioning of specialist palliative care services in England.

OBJECTIVES: Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. METHODS: We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. RESULTS: 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. CONCLUSIONS: The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning.