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Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

Division of Mental Health, St George’s, University of London, Cranmer Terrace, London

R Whelton

Division of Mental Health, St George’s, University of London, Cranmer Terrace, London

L Curfs

University Maastricht/Academic Hospital Maastricht, Maastricht

S Hollins

Division of Mental Health, St George’s, University of London, Cranmer Terrace, London

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient’s difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.

Key Words: attitude of health personnel • death • health services accessibility • intellectual disabilities/mental retardation • palliative care • questionnaires

Palliative Medicine, Vol. 22, No. 3, 281-290 (2008)
DOI: 10.1177/0269216308088686


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