Spotlight issue: Comprehensive care at the end of a person’s life
People with intellectual disability experience barriers in access to health care, including access to end-of-life care.37,38 Referral to end-of-life care should be based on sound clinical evidence, as often people with intellectual disability are referred for palliative care when active treatment should have been pursued.2
A recent cross-sectional study found a low level of awareness among people with intellectual disability and clinicians about approaching death and involvement in end-of-life care.38 These barriers are the same as those that impact general health care, for instance, communication barriers, cognitive bias, and lack of involvement of the person, their family, supporters or guardians in decision-making.
Another barrier in health care is the difficulty in identifying when long-term management of chronic comorbidities becomes end-of-life care. A person’s different ways of expressing pain can also mean that illness is missed until it is too late and end of life can be unexpected.[74]
Important NSQHS Actions
| Action 5.15 | The health service organisation has processes to identify patients who are at the end of life that are consistent with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care. |
|---|---|
| Action 5.19 | The health service organisation has processes for routinely reviewing the safety and quality of end-of-life care that is provided against the planned goals of care. |
| Action 5.20 | Clinicians support patients, carers and families to make shared decisions about end-of-life care in accordance with the National Consensus Statement: Essential elements for safe and high-quality end-of-life care. |
Strategies for improvement
Strategies to support Actions 5.15, 5.19 and 5.20 include:
- Building expertise within the health service by including end-of-life care in the health service’s training on intellectual disability
- Using Delivering and Supporting Comprehensive End-of-Life Care: a user guide for practical strategies health service organisations and clinicians can use to deliver comprehensive care that aligns with the person’s expressed wishes and goals at the end of their life. The guide addresses the essential elements of the Essential elements for safe and high-quality end-of-life-care: National Consensus Statement.
Resources
- Palliative Care New South Wales Palliative care for people with intellectual disability
- Talking End of Life toolkit and training modules
- University of Hertfordshire Palliative Care and Intellectual Disabilities
- Council for Intellectual Disability End of life care
- Palliative Care Education & Training Collaborative – supports, education and resources to assist services for people with intellectual disability
- 3DN How can we improve palliative care for people with intellectual disability?
- 3DN New e-Learning module on end-of-life discussions is now available for disability professionals.