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Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. Methods: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. Results: In Round 1, components were rated as (very) relevant by 70–98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67–97% (M = 90%) and feasibility ratings 66–86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. Conclusion: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

In 2018, the authors published their analysis of nine 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, 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.

Background: \ud People with intellectual disabilities are more likely to experience sleep problems. Sleep can impact on health and well-being; therefore evidence-based interventions are required to improve sleep in this population.\ud Method: \ud An integrative literature review was conducted on the impact of nutrition on sleep in people with intellectual disabilities. Following screening of papers (n=289), fourteen papers met the inclusion criteria.\ud Results: \ud Themes related to nutrition and improved overall wellbeing, use of nutritional supplements, specific foods, links to health comorbidities and food fussiness.\ud Conclusion: \ud This is the first comprehensive review completed on nutritional interventions to improve sleep in people with intellectual disabilities. Dietary patterns may be an important factor to improving the quality and quantity of sleep. However, the current literature regarding the benefit of improved nutrition on sleep in people with an intellectual disability needs to be interpreted with caution.

Background: People with an intellectual disability experience significant inequalities in end-of-life and palliative care provision. Aims: To identify the key characteristics of practice initiatives and case reports that have won a UK award for the outstanding provision of end-of-life care for people with ID (2008–2018). Methods: Thematic content analysis of the written nominations for award winners and those highly commended (n=25). Findings: Four themes were identified: (1) Good practice was dependent on ‘champions’ with drive, enthusiasm and determination, supported by committed organisations and managers. (2) Collaboration was essential, including collaboration with families. (3) Care was highly individualised, putting the person's story at the centre. (4) There was a focus on staff training and use of specifically designed or adapted tools. Conclusion: The good practice examples are encouraging. Focus is now needed on ensuring that good practice is sustained, replicated and embedded within policies and organisational cultures. Currently, it remains over-dependent on committed individuals within organisations.

The research about understanding the end of life and decision-making by people with intellectual disability is in its infancy. There are many unknowns, limited by the available empirical research. In this chapter we report the evidence combined with best clinical practice. The chapter focuses on end of life in older age where the person has time to make choices. We do not address the tragedy of sudden and unexpected death, wherein there has been no or little time to make decisions. Emphasis is given to how families, carers and professionals (We use the term “caregivers” throughout the chapter as the collective term to include families, carers and professionals, unless otherwise specified.) can ensure that the person with intellectual disability is central in end-of-life decision-making and can meaningfully participate in end-of-life care planning.

This chapter helps readers to understand what happens when someone reaches the end of life. It explains what good palliative care and end-of-life care looks like and how it can be achieved. It focuses on the following areas: involving the right services; managing pain and other symptoms; providing emotional, spiritual and social support; involving and supporting family and friends; advance care planning; shared decision-making; information and communication; death, and knowing what to expect; and bereavement support for all those left behind, including family, friends and staff. The issues are illustrated through the story of Victoria Willson, who had profound learning disabilities and died aged 43.

Background Illness and death are part of life for everyone, including people with intellectual disabilities. This study investigated the extent to which staff communicate about death with people with intellectual disability facing terminal illness or bereavement. Method Staff who support people with intellectual disability in the UK (n = 690) completed an electronic survey. Detailed data were obtained from staff where a client had died in the past 12 months (n = 111), was terminally ill (n = 41) or had been bereaved (n = 200). Analysis included descriptive and chi-squared statistics. Results 52.6% of people with intellectual disability who were terminally ill were told about their illness, and 18.1% were told they would die. Of those experiencing an anticipated bereavement, 32.4% of staff said no one talked about this with them beforehand. A quarter of staff had received training on end of life or bereavement. Conclusion Death affects many people with intellectual disability. Staff require training and support in communicating death.

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was ‘Patient-related considerations when issuing DNAR orders’. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of ‘The decision-maker role’ was as important as that of ‘The decision procedure in an organisational context’. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

Background Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. Method Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. Results No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about “flagging” patients might be a significant barrier. Discussion Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

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. Electronic supplementary material The online version of this article (10.1186/s12910-018-0257-6) contains supplementary material, which is available to authorized users.

Purpose : Growing numbers of people with intellectual disabilities are diagnosed with a life-limiting illness such as cancer. Little is known about disclosure of diagnosis and prognosis to this group. The study aim was to explore how much people with intellectual disabilities who have cancer understand about their diagnosis and prognosis, and to explore how much they are told about their cancer. Method : 13 people with intellectual disabilities and cancer took part in a 3-year ethnographic study. Data collection consisted mostly of participant observation. Participants were visited regularly for a median of 7 months. Results : Eleven participants were told that they had cancer, but most were not helped to understand the implications of this diagnosis or their prognosis. Decisions around disclosure, as well as the task of truth-telling, rested mostly with relatives and paid carers. Those with severe/profound intellectual disabilities were most likely to be protected from the truth. Understanding was affected by cognitive ability, life experience and truth-telling. Lack of understanding affected the ability to take decisions about treatment and care. Conclusions : Existing models for breaking bad news are inadequate for people with intellectual disabilities. The findings suggest that more open communication is needed, but further studies are needed to establish best practice in this area.

BACKGROUND: People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. AIMS: To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. METHODS: This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team. RESULTS: The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. CONCLUSION: It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.

This article describes the challenges of ‘being with’ suffering people who have learning disabilities. People who have learning disabilities often hide their pain and distress, exhibiting a tendency to comply. This stems partly from life-long powerlessness and partly from the inability of others to bear that distress. This article reflects on the author’s involvement with two women who had learning disabilities and who were dying of cancer. The author describes how, because there was little that could be done to relieve the women’s distress, ‘being with’ the two women was almost unbearable. The manner in which hospice nurses related to the women is examined. The author also reflects on her own interactions with the women using her contemporaneous field notes, concluding that listening, without the notion of helping, is an important skill. Recommendations include focusing fully on such patients with the desire to understand, and avoiding the urge to ‘help’. Conflicts of interest: none

Accessible summary • This is the story of John Davies. John has learning disabilities. He has cancer. He tells his story in his own words. • John found a lump on his penis (willie). It was cancer. He didn't go to the doctor. He left it too late. Now he is very ill with cancer. Maybe he will die of it. If he had gone to the doctor sooner, he could have got better. • This is what John is telling you: If you find something wrong with you, you should tell someone. You should go to the doctor. • We are doing a study. We want to find out what it is like to have cancer. We want to find out what helps people who have cancer. We are listening to their stories. There will be 20 people in our study. John is one of them. His story helps us to look after people with cancer better. Summary As people with learning disabilities live longer, and the incidence of cancer is rising, it is of increasing importance to understand the lived cancer experience of this group. Consideration of the viewpoints of people with learning disabilities themselves will facilitate the development of cancer support services that are appropriate and sensitive to their needs. This paper presents preliminary findings of an ethnographic study into the experiences of people with learning disabilities who have cancer. One of the study participants, John Davies (who has mild learning disabilities), relates his cancer experience in his own words. Having ignored his symptoms until it was too late, he now urges others to go to the doctor as soon as possible. The study is ongoing, but findings to date highlight the importance of listening to the story of people's lives and illness.

People with intellectual disabilities are among the most disadvantaged groups in society. A literature review was conducted aiming to answer the following question: What are the palliative care needs of people with intellectual disabilities? The literature review covers case histories, morbidity and mortality patterns for people with intellectual disabilities, their healthcare needs and primary care provision, the way they may present symptoms, their conceptualization of illness and death and issues around education and training. While the literature review reveals a lack of empirical data around the palliative care needs of people with intellectual disabilities, a number of potential problem areas are highlighted. These include late presentation of illness, difficulties in assessing symptoms, difficulties in understanding the illness and its implications and ethical issues around decision making and consent to treatment. It is suggested that future studies will need to include the views and experiences of people with intellectual disabilities themselves. Areas for possible future development include symptom assessment, evaluation of current practice and access to services and the development of information and training materials.

Purpose To explore the experiences of people with intellectual disabilities (ID) who have a relative or friend with cancer, and to identify their support needs. Methods and sample Participants were 21 adults with ID who had a relative/friend with cancer, now or in the past. Data were collected using focus groups and face-to-face interviews. Focus groups met four times, using a range of data collection techniques. Sessions were audio recorded and transcribed verbatim. Data were analysed using thematic content analysis. Data were collected between March 2010 and March 2011. Results Four themes emerged: (1) Protection and inclusion: participants who had not been told about their loved one's illness felt excluded; (2) Coping with cancer: participants had vivid memories of events and feelings. They worried about their families. Many had become carers themselves; (3) Understanding cancer: participants lacked knowledge about cancer and wanted to know more. (4) Someone to talk to: participants would have liked to share their feelings and questions with family, friends or professionals, but had not voiced their questions or concerns. ‘Someone to talk to about my feelings and worries’ and ‘Someone to support the rest of my family’ were voted the most helpful support strategies. Conclusions Cancer nurses should ensure that people with ID in their patients' social circle are included in the family unit and receive adequate emotional support. They should be proactive in giving them information that is easy to understand. Using fictional stories can be particularly helpful in eliciting questions and concerns.

Around 1–3% of the world’s population has intellectual disabilities (Mash and Wolfe, 2004). Communication difficulties are a major obstacle in providing effective palliative care to this group. Problems may arise due to a lack of comprehension and a lack of verbal skills, affecting assessment and the provision of psychosocial support. This paper maps the communication difficulties experienced by people with intellectual disabilities within a palliative care setting, drawing on several research studies carried out by the authors. These include the time-consuming nature of effective communication, and difficulties around breaking bad news. The paper explores the ways in which people with intellectual disabilities may (mis)understand verbal information. Strategies for managing communication difficulties are outlined, including ways to use clear, unambiguous language. The authors conclude that the ability to communicate effectively with people with intellectual disabilities is a useful skill that will benefit all patients.

The incidence of cancer among people with intellectual disabilities is rising. Decisions will have to be taken about whether, and how much, the person with intellectual disabilities is told about the illness. Objective: To explore issues around disclosure and information about diagnosis and prognosis for people with intellectual disabilities who have cancer. The paper discusses evidence of current practice, and possible 'best practice' models for breaking bad news. Methods: A review of the literature around truth-telling for the general population, and for people with intellectual disabilities. Issues are further illustrated by examples from the authors' clinical and research experience. Results: Unlike the general population, many people with intellectual disabilities are still being protected from the truth about cancer. How much they can understand depends on their cognitive ability, their life experience, and how much they are told. A lack of information prevents people from participating in important treatment decisions. Non-disclosure may protect those who genuinely lack capacity to understand from worrying, but can cause distress in those who could be helped to understand. Traditional models for breaking bad news may not be adequate for people with intellectual disabilities. Conclusion: People with intellectual disabilities have a right to honest information when they have cancer. Further research is needed to explore the experience of people with intellectual disabilities around disclosure and information, and to establish workable and acceptable 'best practice models' for breaking bad news.

Many people with intellectual disabilities will be affected by cancer in their lifetime. There is a lack of available knowledge about people with intellectual disabilities’ understanding and experience of cancer, and about their need for cancer information. The principal aim of the study was to explore the information needs of people with intellectual disabilities who are affected by cancer. This was a qualitative, hypothesis generating study. Nine people with intellectual disabilities who were affected by cancer were identified using a purposive sampling method; five of these participated in the study. Data collection included observation of the use of a pictorial cancer information book designed for people with intellectual disabilities, and semi-structured interviews. Data analysis revealed three themes: (1) “Nobody told me”: the desperate need for cancer information; (2) “That reminds me”: telling my own story; and (3) “I don’t know much about cancer”: the difficulties of the staff supporting people with intellectual disabilities to read the cancer information book. The people with intellectual disabilities in this study were not provided with information about cancer. They wanted this information, and appeared to be capable of comprehending it. Further development of accessible information materials around cancer and palliative care is needed.

Background Current models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this. Healthcare professionals don9t know how to communicate adequately with people with LD. A new model for breaking bad news to people with LD The model was developed following a focus group/interview study involving 96 participants, including people with LD, family carers, LD professionals and healthcare professionals (see related abstract for oral presentation). The findings were combined with the literature. A preliminary model was developed; 60 stakeholders gave feedback on this, including a wide range of family carers, professionals and academics. The preliminary model was modified following this feedback. The poster will present the model in a visual format. The model has four components. BUILDING A FOUNDATION OF KNOWLEDGE is central to the model. Gradually and over time, the person with learning disabilities builds his/her understanding of the way his/her situation is changing because of the bad news. The people around him/her help with this, by giving small, singular chunks of information that make sense to the person. This does not have to done by talking: much of the information will be understood through experience.The other three components must be considered throughout: CAPACITY AND UNDERSTANDING, taking account of the Mental Capacity Act PEOPLE INVOLVED, including family, partners, friends, paid carers and professionals SUPPORT NEEDED by everyone involved, including information, emotional, social, practical and spiritual support. The model now needs to be tested in practice.