You don't look very well dear: consultants and decisions in cancer care for people with ID

Aim: Consultants are the ‘gate-keepers’ to palliative care treatment. Consultant decision-making for people with ID who have cancer was considered, with the

aim of ascertaining the most appropriate ways of involving people with ID and their family/carers in these decisions.

Method: Focus groups were held throughout Kent with specialist palliative care consultants. These included discussions on when and how a person with ID would be involved in decision-making about their treatment.

Results: Palliative care consultants had concerns about involvement of patients with ID in decision-making. In particular, fear over capacity issues was common and appeared to determine levels of involvement. Consultant-made decisions were also limited by lack of knowledge about the person’s quality of life.

Conclusion: Wider discussion regarding consultant decision-making in the care of people with ID who develop cancer is essential. At the present time, there is limited involvement by the person with ID, although the UK Mental Capacity Act stresses that all should be able to participate in decisions, even if time and support is required to do this. Further research is needed to establish how best to support consultants to include people with ID in decision-making.