“My greatest wish is that every person with intellectual disability who is dying has access to high quality palliative care to receive all of the mental and physical comfort and support they need to die in the location of their choice.”
Maria Heaton knows first hand the importance of improving palliative health care for people with intellectual disability. Maria’s children, Tristan (pictured with Maria) and Tiarna, who both had intellectual disability, required palliative care before they died.
“When Tiarna died in 2003 aged 3 years, we had access to 24/7 nursing support. Her deterioration was very rapid over days but was well managed.” Maria says.
“Tristan’s deterioration started in May 2014, and he died in July. During this period, we had an admission to hospital during which several end-of-life conversations were held at his bedside. When we were discharged home from hospital Tristan had periods of great distress for which we were administering morphine which did not seem to help. It dawned on me that Tristan was anxious. I too was anxious and distressed after that final admission. Mental health support for a person like Tristan who is non-verbal has come a long way. At the time the person who helped the most was a child life therapist who understood our needs and provided us with books to discuss anxiety, separation and death. We used these books to provide Tristan with reassurance and support.”
“Our wish was for Tristan to die at home in a familiar environment surrounded by people whom he knew and loved. When Tristan died, we only had access to nursing support during business hours and after hours we had access to phone support. The way that this impacted us was that when Tristan started to deteriorate, I had to identify the change in phase and administer his end-of-life medication at 3am. Tristan died a few hours later.”
Palliative care for people with intellectual disability
Research highlights that people with intellectual disability are less likely to access palliative care services, and there is currently a lack of guidance on services to meet their needs. This is despite people with intellectual disability living longer and experiencing increasing rates of life-limiting conditions.
“People with intellectual disability need access to high quality palliative care to ensure that we stop what happened in the past and transform the future,” Maria says.
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Maria’s experience of palliative care is not just personal; she also has a deep professional knowledge of palliative care, having worked as a clinical nurse consultant in palliative care for many years. She is currently acting Program Manager with the Specialist Team for Intellectual Disability Sydney (STRIDES) for NSW Health. In 2012 Maria was awarded NSW Carer of the Year.
We are very fortunate to benefit from Maria’s knowledge and experience as part of the research committee for our project Improving palliative care services for people with an intellectual disability. Under this project, we are working to co-design and trial a tailored model of palliative care for people with intellectual disability, and to develop a Toolkit of resources to support provision of high quality care.
We are honoured that Maria shared her story with us for National Palliative Care Week 2023, giving us the opportunity to highlight the people at the heart of quality palliative care. Please help us raise awareness about the importance of improving access to, and quality of, palliative care for people with intellectual disability.
Together, we can work towards ensuring that everyone receives high quality palliative care.
Find out more
References
- Bittles, Petterson, Sullivan, Hussain, Glasson, Montgomery, The Influence of Intellectual Disability on Life Expectancy, The Journals of Gerontology: Series A, Volume 57, Issue 7, July 2002, doi.org/10.1093/gerona/57.7.M470
- Liao, Vajdic, Trollor, Reppermund, Prevalence and incidence of physical health conditions in people with intellectual disability - a systematic review, PLoS One, 2021 Aug 24;16(8):e0256294. doi: 10.1371/journal.pone.0256294
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