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Palliative care for patients with communication and cognitive difficulties
Kyle Sue1, Paolo Mazzotta2, Elizabeth Grier3
1Clinical Assistant Professor in the Discipline of Family Medicine at Memorial University of Newfoundland in St John's. ksue@ualberta.ca.
Canadian Family Physician Medecin De Famille Canadien
|April 27, 2019
Summary
This study offers a framework to improve palliative care for adults with intellectual and developmental disabilities (IDD). It addresses communication barriers and symptom assessment to enhance end-of-life care for this population.
Area of Science:
- Medical Care
- Disability Studies
- Palliative Care
Background:
- Palliative care for adults with intellectual and developmental disabilities (IDD) requires tailored approaches.
- Effective communication and symptom assessment are critical challenges in IDD palliative care.
- Limited understanding exists regarding end-of-life needs for adults with IDD, particularly those in community settings.
Purpose of the Study:
- To enhance caregiver and clinician confidence in delivering palliative care to adults with IDD.
- To provide a framework for overcoming barriers to effective palliative care in this population.
- To improve the quality of life and end-of-life experience for adults with IDD.
Main Methods:
- A comprehensive literature review was conducted.
- Evidence from Level I to Level III studies was synthesized.
- Focus was placed on implementing clinical practice guidelines for palliative care in IDD.
Main Results:
- Pain and psychological distress are significant issues in adults with IDD, often presenting atypically.
- Barriers include communication difficulties and assumptions about patient capacity, leading to exclusion from care.
- Integrating palliative care into existing care patterns and prioritizing trust and continuity are essential.
- Careful symptom assessment and judicious use of interventions can manage distress.
Conclusions:
- Validated tools and recommendations will improve communication and symptom interpretation.
- The framework supports treatment decisions and advanced care planning for adults with IDD.
- It addresses grief and critical end-of-life considerations, enhancing care quality.
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