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• Identifying the need for palliative care is a result from growing awareness.
• This process of growing awareness in people with ID has unique characteristics.
• Continuous communication about changes in health and wellbeing is essential.
• Physicians should be proactive regarding identification of palliative care needs.
BackgroundA growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care.AimsWe aimed to explore how the need for palliative care is recognized in people with ID.Methods and proceduresWe conducted a semi-structured interview study among 10 ID-physicians in the Netherlands.Outcomes and resultsIdentification 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 implicationsDistinctive 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.
Journal: Research in Developmental Disabilities - Volume 59, December 2016, Pages 55–64