Physicians' identification of the need for palliative care in people with intellectual disabilities

Abstract

Background: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care.

Aims: We aimed to explore how the need for palliative care is recognized in people with ID.

Methods and procedures: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands.

Outcomes and results: Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process.

Conclusions and implications: Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.

Keywords: End-of-life care; Identification; Intellectual disabilities; Palliative care; Physician.