Improving palliative care for people with intellectual disabilities: Communication is key

In this virtual special issue of Palliative Medicine, we bring together seven papers published in Palliative Medicine that highlight the importance of communication in the provision of palliative care for people with intellectual disabilities. Intellectual disability is characterised by significant limitations in intellectual functioning and adaptive behaviour, that impact everyday social and practical skills, including communication. ¹ Importantly, just like anyone else, people with intellectual disabilities have unique preferences, needs and support requirements which may mean meeting their palliative care needs is, or is perceived as, more difficult.^2,3

In 2012, the European Association for Palliative Care (EAPC) convened a Taskforce, consisting of 80 experts in the field of palliative care specifically for people with intellectual disabilities, with a view to developing consensus norms for best practice. Using Delphi methods, the taskforce came to the consensus that clinicians and carers have an important role to play in understanding and supporting the communication needs of people with intellectual disabilities. ² This may include ensuring information is available in accessible formats tailored to the person’s needs and preferences, ⁴ such as via augmentative communication systems that use symbols, signs and pictorial formats and/or spoken word. ³ The consensus norms are an important step forward, recognising the importance of communication in the provision of palliative care for people with intellectual disabilities, but of course, the way forward also requires an understanding of the past.

In 2003, a literature review published in Palliative Medicine suggested people with intellectual disabilities were among the most disadvantaged groups in society, with their capacity to communicate, to understand their illness and its implications identified as key concerns. ⁵ In 2008, a survey of palliative care professionals indicated similar findings, with concerns about comprehension and difficulties with communication cited as the two biggest challenges in caring for patients with intellectual disabilities. ⁶ About 13 years on, these challenges remain. A recent Australian study published in Palliative Medicine conducted with a multidisciplinary cohort of specialist palliative care clinicians, reported that aside from the challenges of communicating with people with different communication preferences, clinicians’ perceptions and assumptions about a person’s capacity to communicate influenced whether or not the clinicians initiated conversations about dying and death. ⁷ Furthermore, this study, demonstrated that while some palliative care clinicians reported routinely including the person with an intellectual disability in care conversations even when the person did not use verbal language, others reported assuming people with intellectual disabilities did not have capacity to understand. ⁷ Ensuring high-quality palliative care relies on clinicians not making such assumptions, and instead seeking to communicate in a way that meets their needs, allowing additional time, using communication tools or other methods tailored to the needs of the individual. ⁴

Most telling is that there is scant evidence about palliative care provision from the perspective of people with intellectual disabilities themselves. A recent systematic review which aimed to identify the palliative care needs and access issues for adults with intellectual disabilities demonstrated that only 1% of the participant sample across 52 included studies, were people with intellectual disabilities. ⁴ Where the perspectives of people with intellectual disabilities have been sought, the findings are powerful. A study published in 2016 sought the views of people with mild intellectual disabilities in response to a fictitious picture story about care relationships for people with a life-limiting illness. ⁸ Participants suggested that talking to the person and asking what they want is important in understanding their wishes, and demonstrated that people with mild intellectual disabilities are able to contribute to important conversations. ⁸

Clinicians and researchers need to prioritise the right source of truth when it comes to assessing and understanding the palliative care needs of people with intellectual disabilities. People with intellectual disabilities, and their family carers, should also be afforded an opportunity to participate in palliative care research according to their ability, when and how they choose. This may include providing them with opportunities to contribute to activities aimed at improving service provision and informing policy. Its only through communicating, sharing information, asking and responding to questions, that the wishes of people with intellectual disabilities are honoured; after all ‘it is about their life’ (p. 628). ⁸

In essence, irrespective of intellectual disability, every person has the right to high-quality palliative care. Whilst the consensus norms for palliative care of people with intellectual disabilities are now published, they are considered aspirational. ² Rather than planning, providing and evaluating care according to assumptions, let’s instead prioritise practice measures and research that place people with intellectual disabilities at the centre of our focus, and as part of the research team. It is our hope that these insights will not only spark further research interest in this area, but ultimately, improve palliative care provision for people with intellectual disabilities.