L. Curfs - Academia.edu (original) (raw)

Papers by L. Curfs

International Journal on Disability and Human Development, 2008

The population of people with intellectual disabilities is ageing, and growing numbers are dying ... more The population of people with intellectual disabilities is ageing, and growing numbers are dying of age-related illnesses, including cancer. Objective: This paper explores the issues that affect the delivery of optimal palliative care to people with intellectual disabilities who have cancer. Methods: The literature is reviewed and pertinent issues are highlighted. As an illustration and to expose further relevant issues, the case is described of a man with severe intellectual disabilities who died in a group home. He was a participant in an ethnographic study of the experiences of people with intellectual disabilities who have cancer. Results: The review of the literature around palliative care and intellectual disabilities shows a range of issues, including late diagnosis, difficulties around the presentation and assessment of pain and other symptoms, problems with communication, issues around disclosure of diagnosis and prognosis, ethical issues around consent to treatment and end-of-life decision making, service planning, staff training, and the patient's own wishes. From the case study, further issues emerge, including the need to acknowledge people's life experience when they are dying, and the need to recognise the important place of families in their lives. Conclusion: The authors conclude that people with intellectual disabilities have a right to receive the best possible palliative care at the end of their lives, and that it is crucial to listen to their own needs and wishes.

International Journal on Disability and Human Development, 2008

The population of people with intellectual disabilities is ageing, and growing numbers are dying ... more The population of people with intellectual disabilities is ageing, and growing numbers are dying of age-related illnesses, including cancer. Objective: This paper explores the issues that affect the delivery of optimal palliative care to people with intellectual disabilities who have cancer. Methods: The literature is reviewed and pertinent issues are highlighted. As an illustration and to expose further relevant issues, the case is described of a man with severe intellectual disabilities who died in a group home. He was a participant in an ethnographic study of the experiences of people with intellectual disabilities who have cancer. Results: The review of the literature around palliative care and intellectual disabilities shows a range of issues, including late diagnosis, difficulties around the presentation and assessment of pain and other symptoms, problems with communication, issues around disclosure of diagnosis and prognosis, ethical issues around consent to treatment and end-of-life decision making, service planning, staff training, and the patient's own wishes. From the case study, further issues emerge, including the need to acknowledge people's life experience when they are dying, and the need to recognise the important place of families in their lives. Conclusion: The authors conclude that people with intellectual disabilities have a right to receive the best possible palliative care at the end of their lives, and that it is crucial to listen to their own needs and wishes.