Delivering high quality end of life care for people who have a learning disability

This guidance document provide resources and tips for commissioners, service providers and health and social care staff providing, or delivering care to people with a learning disability at the end of their lives | NHS England

Image source: NHS England

This ‘top tips’ guide aims to support commissioners, providers and clinicians to reduce inequalities in palliative and end of life for people with a learning disability, focusing on ‘The Ambitions for Palliative and End of Life Care’. These six ambitions provide a framework for national and local health and care system leaders to take action to improve palliative and end of life care. Developed by 27 organisations across the palliative and end of life care system, these ambitions set out what high quality palliative
and end of life care looks like. The ambitions call on leaders from every part of the health and caresystem, and the wider community, to put the framework into practice.

This ‘top tips’ guidance has been developed by NHS England in association with the Palliative Care for People with Learning Disabilities (PCPLD) Network. The development process involved consultation with Public Health England and a range of commissioners, providers and professionals working within palliative and end of life care and learning disability settings. People with lived experience have also helped us to develop the guide.



Quality of therapeutic relationships in the delivery of palliative care to people with intellectual disabilities

Ryan, K. et al. (2016) BMJ Supportive & Palliative Care. 6(4) pp. 430-436


Background: The importance of the therapeutic relationship in the delivery of palliative care is well recognised. Little has been published on the nature or quality of relationships formed between staff and patients with intellectual disabilities despite case reports suggesting that difficulties exist in providing palliative care to this group.

Aims: This study was part of a project that aimed to describe the delivery of palliative care to people with intellectual disabilities in a region of Ireland and to conduct a corporate assessment of palliative care need. We detail findings that explore the nature and importance of the quality of relationship in the delivery of care.

Methods: 91 staff from palliative care and intellectual disability services participated in 16 focus groups.

Findings: Staff valued their relationships with service users, and felt that the quality of their relationship affected its therapeutic potential. Participants described factors fundamental to the development of quality relationships. Palliative care and intellectual disability staff commented on the importance of trust, of continuity of relationship and of knowing the individual. However, palliative care staff admitted to difficulties in these areas when providing care to people with intellectual disabilities. It appeared that quality of care was affected in situations where staff failed to form authentic relationships.

Conclusions: This study adds to our knowledge of the processes of delivery of care to people with intellectual disabilities. The description of difficulties experienced by palliative care staff gives us an opportunity to develop strategies to improve the quality of services provided.

Read the full article here

Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone

Tuffrey-Wijne, I. et al. Palliative Medicine. July 2016 vol. 30 no. 7613-615
Image source: Alice Bartlett – Flickr // CC BY-NC 2.0

People with intellectual disabilities are a sizeable minority group, making up approximately 2% of the population. They need specific attention when they reach the end of life. While many of the palliative care needs of people with intellectual disabilities may be no different from those of the general population, they often present with unique issues, challenges and disadvantageous circumstances that make it more difficult to meet those needs.

It has been shown decisively that people with intellectual disabilities have poorer health outcomes than the general population for reasons unrelated to the causes of their cognitive impairment, but rather, due to failings within healthcare systems. This is compounded by persistent negative attitudes and assumptions about quality of life of people with life-long cognitive impairments.1,2 These failings are not limited to acute hospital services or social care settings. In 2013, the Confidential Inquiry into Premature Deaths of People with Intellectual Disabilities (CIPOLD), which investigated the deaths of 247 people with intellectual disabilities, reported that

people with [intellectual] disabilities were less likely than the comparator group of people without [intellectual] disabilities to have access to specialist palliative care services and received less opioid analgesia in their final illness. Their deaths were sometimes described as not being planned for, uncoordinated and poorly managed.3 (p. 119)

The specific challenges for palliative care services have been well described.4,5 They include lack of knowledge and experience among palliative care staff in caring for people with intellectual disabilities, problems with symptom recognition and management, severe communication challenges, patients’ difficulties in understanding complex concepts including death and dying, multiple co-morbidities and complex social situations.

Read the full editorial here

‘From activating towards caring’: shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians

BMC Palliative Care 2015, 14:33

Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID.

This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts.

A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis.

Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families’: relatives and care staff.

Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person’s needs, ‘reflection’ on their own emotions and caring relationships, ‘attentiveness’ to the ID person’s wishes and expressions of distress, ‘responsibility’ for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing’ the care with others.

End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.

via BMC Palliative Care | Abstract | ‘From activating towards caring’: shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.

Learning about dying, death, and end-of-life planning: Current issues informing future actions

Weise, M. Learning about dying, death, and end-of-life planning. Journal of Intellectual & Developmental Disability Online – 23 January 2015

Knowing about dying and death is a typical part of lifelong learning, gained through personal experience with the death of loved ones, popular culture, and formal education. Sudden and unexpected death aside, adults in the general community can use this knowledge to plan for the manner of their dying. Such planning might include will making, advance care planning, enduring guardianship, organ donation and, for some, decisions about the where and the how of end-oflife care.

People with intellectual disability, however, are not afforded similar opportunities to learn or plan for dying. The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understanding dying and death.