http://isrctn.org/>, Dec 5, 2012
Objectives: To identify the factors that compromise the implementation of reasonably adjusted hea... more Objectives: To identify the factors that compromise the implementation of reasonably adjusted health care services for patients with intellectual disabilities in acute NHS hospitals. Design: A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013). Setting: Six acute NHS hospital trusts in England. Methods and participants: Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Data collection included: staff questionnaires (n=990); staff interviews (n=68); interviews with adults with intellectual disabilities (n=33); questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities; and expert panel discussions (n=42). Results: Hospital policies and strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice was often dependent on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities; lack of staff understanding of the reasonable adjustments that may be
Journal of Policy and Practice in Intellectual Disabilities, Jun 1, 2019
In 2018, the authors published their analysis of 9 online case reports by the Euthanasia Review C... more In 2018, the authors published their analysis of 9 online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary and update on that work, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement", which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.
While information from other countries suggests varying degrees of knowledge about foetal alcohol... more While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.
Social health and mental health needs change throughout life, and this chapter highlights those p... more Social health and mental health needs change throughout life, and this chapter highlights those particularly relevant for adolescents and elderly people. As a general rule, people with intellectual disabilities have the same needs as other members of the community, but they may also have additional needs for which they are entitled to extra support.
Background: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands s... more 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 lifelong disability. The sometimes brief time frames and limited number of physicianpatient 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.
http://isrctn.org/>, Dec 5, 2012
Objectives: To identify the factors that compromise the implementation of reasonably adjusted hea... more Objectives: To identify the factors that compromise the implementation of reasonably adjusted health care services for patients with intellectual disabilities in acute NHS hospitals. Design: A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013). Setting: Six acute NHS hospital trusts in England. Methods and participants: Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments. Data collection included: staff questionnaires (n=990); staff interviews (n=68); interviews with adults with intellectual disabilities (n=33); questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities; and expert panel discussions (n=42). Results: Hospital policies and strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice was often dependent on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities; lack of staff understanding of the reasonable adjustments that may be
Journal of Policy and Practice in Intellectual Disabilities, Jun 1, 2019
In 2018, the authors published their analysis of 9 online case reports by the Euthanasia Review C... more In 2018, the authors published their analysis of 9 online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary and update on that work, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement", which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.
While information from other countries suggests varying degrees of knowledge about foetal alcohol... more While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.
Social health and mental health needs change throughout life, and this chapter highlights those p... more Social health and mental health needs change throughout life, and this chapter highlights those particularly relevant for adolescents and elderly people. As a general rule, people with intellectual disabilities have the same needs as other members of the community, but they may also have additional needs for which they are entitled to extra support.
Background: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands s... more 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 lifelong disability. The sometimes brief time frames and limited number of physicianpatient 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.
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Papers by Sheila Hollins