Little practical engagement of people with learning disabilities with issues of death and dying despite in principle support for right to know


We have posted previously about end of life issues for people with learning disabilities, for example, pointing to the impact of training in palliative care as well as to resources such as the films made by Change for the dying matters coalition that can be used to help include people with learning disabilities in discussions around death, dying and bereavement.

Looking at the issue of breaking bad news to people with a terminal diagnosis for example, Tuffrey Wijne et al found that the vast majority of learning disabilities professionals felt that a person with learning disabilities had the right to know but as a result of their work with a broad range of stakeholders, considered that the issue of disclosure was not a static off decision, but required constant re-assessment of the person’s coping ability and their need to understand aspects of the truth over time.

The researchers in this study were interested specifically in looking at ways in which staff working to support people in community living environments engaged with people with learning disability about dying and death.

What they did was to run a number of focus groups and carry out a number of interviews with staff who had either no experience with the death of people they supported; staff who did experience the sudden death of somebody they supported; or staff who had had an experience of the death of somebody after a period of end-of-life care.

What they found was that staff were almost unanimously in favour of people with learning disabilities knowing about death and dying in principle, but that there was actually limited in-practice engagement with people about the topic.

They found that the factors impacting on that engagement were staff experience, the person’s capacity to understand and the opportunity to engage with the person.

Thinking more about the nature of the ‘opportunities’ for engagement with the topic, the authors identified four categories:

  • when family members die
  • incidental opportunities
  • when people live with someone who is dying
  • when the person themselves is dying.

They conclude that people with learning disabilities have the fundamental right to know about dying and death, but that “sophisticated staff skills” are needed to ensure that when the opportunities arise, with learning disabilities can be meaningfully engages with end-of-life issues.

‘If and when?’: the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying, Wiese, M. et al., in Journal of Intellectual Disability Research, 57: 980–992.0

•    ageing;
•    community living staff;
•    death;
•    dying;
•    end of life;
•    intellectual disability

Share on Facebook Tweet this on Twitter Share on LinkedIn Share on Google+
Mark as read
Create a personal elf note about this blog
Profile photo of John Northfield

John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

More posts

Follow me here –