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Shifts in care approaches and attitudes at the end of life of people with intellectual disabilities: from activating towards caring and letting go.

Veer, A.J.E. de, Bekkema, N., Hertogh, C.M.P.M., Francke, A.L. Shifts in care approaches and attitudes at the end of life of people with intellectual disabilities: from activating towards caring and letting go. European Journal of Palliative Care: 2015 64. Abstract. 14th World Congress of the European Association for Palliative Care: Building Bridges. 8-10 mei 2015, Copenhagen.
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Background
The focus in the care for people with intellectual disabilities (ID) is predominantly on self-reliance and participation. An increasing number of them will have life-limiting illnesses and will need palliative care, that requires another care approach.

Aims
The aim is to describe whether and how professionals and relatives change their care approach and attitudes when palliative care is needed.

Methods
Twelve cases of deceased people with ID were reconstructed from the perspective of a relative, doctor, nurse and/or social worker. Half of them died of cancer, while the others died from other chronic diseases or ‘old age problems’. The 45 interviews were transcribed verbatim and analysed inductively.

Results
Five major shifts in care approach were found:
1) Care staff and relatives had to let go of their usual care strategy and adapt to a focus on comforting care, taking over tasks and symptom relief;
2) The interweaving of emotional and professional involvement increasingly became a challenge for care staff,
3) There was heavy reliance on the joint interpretation of signals expressing distress and pain, as symptom relief became urgent and communication with the person with ID was often difficult,
4) The dependency of the person with ID became magnified in the perception of relatives, and medical decisions in particular led to relatives having an overwhelming feeling of responsibility;
5) The awareness grew that the person with ID actually had ‘two families’ who were letting go: relatives and the care staff.

Conclusion
Palliative care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.