Abstract Watch: Current thinking on palliative and end-of-life care for patients living with intellectual and developmental disabilities

Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post to the blog. Here, he presents a selection of articles that focus on ‘current thinking’ on palliative and end-of-life care for patients living with intellectual and developmental disabilities.


Statue of Guanyin

Kong Meng San Ohor Kark See Buddhist Monastery, Singapore – Barry is in front of the statue of Guanyin, revered by Buddhists as the Goddess of Mercy.

End-of-life care in intellectual disability: A retrospective cross-sectional study

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 16 October 2019 – In this, U.K., nationwide population-based post-bereavement survey, the authors report on a population-based survey on the end-of-life care (EoLC). They note some positive experiences and highlight a number of areas for improvement. Health and social services seem to be enabling people with intellectual disability (ID) to stay in their usual residence at the end of their lives, but may not have been offered enough support at the actual time of death or give sufficient encouragement to care providers to involve people with ID in care planning where there is a capacity to do so. Since the population of people with ID is ageing (despite being markedly younger than the general population), multi-morbidity associated with age and frailty means that their EoLC needs are likely to increase in complexity over time. Care facilities and their staff must be supported and equipped to provide the complex care that these people need as they approach the end of their lives. Abstract

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI)

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES | Online – 1 July 2018 – In this study from The Netherlands, the authors report on a screening tool for deteriorating health, indicative of a limited life expectancy of people living with intellectual disabilities. They describe development of PALLI and explore its applicability. The authors used a five‐stage mixed methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Abstract.

Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability

RESEARCH IN DEVELOPMENTAL DISABILITIES, 2019; 87 (4): 21-30. Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life (EoL) care. However, little is known regarding how EoL affects the individual’s personal relationships with family, friends and staff. Interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in New South Wales and Queensland, Australia. Analysis identified three key thematic areas: 1) Relationships with family, relationships with friends and staff roles; 2) Relationships with friends had two sub-themes of “positive experiences” and “negative experiences”; and, 3) Staff roles had two sub-themes of “loss of contact” and “default decision making.” The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual’s EoL. A lack of counselling support was noted as potentially impairing the individual’s friends’ ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when EoL entailed potential movement of the individual with intellectual disability to a new residential setting. Abstract

The End-of-Life Care in People with Intellectual Disabilities & Dementia (ELCIDD) Project: An audit of end‐of‐life care in persons with intellectual disabilities and dementia

JOURNAL OF POLICY & PRACTICE IN INTELLECTUAL DISABILITIES, 2019; 16 (1): 88-92. With a rise in the life expectancy of people with intellectual disabilities in recent decades, there has been a related increase in rates of dementia. As a chronic, progressive condition, dementia presents opportunities for provision of pre‐planned end‐of‐life care (EoLC). This audit focussed on the level of compliance with pre‐defined EoLC standards for a group of patients with intellectual disabilities and severe dementia living in Leicestershire, England. Compliance with pre‐defined EoLC standards was found to be highly variable. Areas of high compliance included all 32 patients [i.e., patient population studied] having access to their primary care physician, 84% having regular review by their psychiatrist and 94% having had a review of their medication regime. In contrast, there was only clear evidence of patient involvement in advance planning for 25% of patients, with similarly few patients having agreement on the use of CPR, a plan for supporting their carers and/or family or a documented preferred place of death. Possible reasons for variable compliance include limited awareness of EoLC standards among intellectual disabilities professionals and carers, difficulties in discerning when patients are approaching the end of their lives and limited involvement of both the patient and palliative care professionals in decision‐making approaches. Full text

Advance Care Planning & Decision-Making

Palliative care for patients with communication and cognitive difficulties

CANADIAN FAMILY PHYSICIAN, 2019; 65 (Supp1): S19-S24. Pain and psychological and emotional distress are important issues for individuals with intellectual and developmental disabilities (IDD), as they can be difficult to assess and measure, and often present atypically, especially in those with limited communication skills. Further, little is known about end-of-life (EoL) needs in the adult population with IDD, especially for those living in community residences. The conducted literature review of patient, caregiver, and clinician experiences exposed considerable barriers, including incorrect assumptions about patients’ capacity to understand and discomfort of both caregivers and clinicians with open communication. This has resulted in exclusion of adults with IDD from their own care, which has proven harmful. Maximizing time in familiar surroundings and establishing trust and continuity are crucial. Sometimes trial and error with empiric use of comfort medications is necessary, but this can be mitigated with careful examination of distress patterns and judicious use of diagnostic testing. It is always best to integrate the palliative approach into the existing pattern of care. The validated tools and recommendations provided will assist with communication, symptom interpretation, treatment decisions, advanced care planning, addressing grief, and important considerations in EoL care. Full text.

Advance care planning in the palliative phase of people with intellectual disabilities: Analysis of medical files and interviews

JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2019; 63 (10): 1267-1272. For half of the people with intellectual disabilities (ID) who had died in this study from The Netherlands, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that advance care planning (ACP) was started in response to the person’s deteriorating health situation. A do‐not‐attempt‐resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life‐sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. ACP in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care. Abstract

Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling

RESEARCH & PRACTICE FOR PERSONS WITH SEVERE DISABILITIES, 2019; 44 (4): 267-279. People with people with profound intellectual and multiple disability (PIMD) are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life (EoL) care and planning. Despite the increased attention that has been given to EoL planning, opportunities to have preferences responded to at the EoL are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about EoL care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. The authors of this article, from the Deakin University, Victoria, Australia, and The Netherlands Institute for Health Services Research, draw on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the EoL. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of EoL planning. Full text.


End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

BRITISH JOURNAL OF LEARNING DISABILITIES, 2019; 47 (2): 70-76. In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end‐of‐life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. Participants with intellectual disabilities were recruited at the University of Dublin by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy‐to‐read information, and the data collection process was successfully completed by having a person‐centred approach. People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. Abstract

Additional Resources

  1. ‘Special issue: Palliative and end-of-life care for people living with intellectual and developmental disabilities,’ Médecine Palliative, 2018; 17 (2): e51-e52, 61-128. Journal contents page. (All articles in French).
  2. ‘Talking End of Life …with people with intellectual disability,’ Australia. (An introduction to the online toolkit and links to many other resources for teaching people with intellectual disabilities about end of life).
  3. ‘Special issue: End of life and people with intellectual disability,’ Journal of Applied Research in Intellectual Disabilities, 2017; 30 (6): 977-1164. Journal contents page.
  4. ‘Advance care planning in palliative care for people with intellectual disabilities: A systematic review,’ Journal of Pain & Symptom Management, 2017; 54 (6): 938-960. Full text.
  5. ‘From disability rights to the rights of the dying (and back again), Laws, 2017; 6 (4): 1-17. Full text
  6. ‘Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care,’ Palliative Medicine, 2016;30 (5): 446-455. Full text
  7. ‘Literature review of best health and social care practices for individuals with intellectual disabilities encountering the end of life,’ Nursing & Palliative Care, 2016; 1 (5); 118-123. Full text
  8. ‘Developing research priorities for palliative care of people with intellectual disabilities in Europe: A consultation process using nominal group technique,’ Plos One, March 2016. Full text
  9. European Association for Palliative Care (EAPC) Reference Group on Intellectual Disability. One of the aims of this Reference Group is to monitor and promote implementation of the White Paper (see 6 above) across Europe, and to promote international research collaborations. Webpage
Barry Ashpole

Barry Ashpole.

More about the author
Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of healthcare, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

This entry was posted in ABSTRACT WATCH, Intellectual disabilities, Minority Communities. Bookmark the permalink.

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