Living with a disability and facing end-of-life care can be challenging and deeply personal. Each person’s experience is unique and during this difficult time, the importance of compassion, support and dedication from caregivers is crucial. During palliative care for people with disability, it is important for friends, family and support workers to understand to process and know what resources are available to support individuals through this journey.
What is a Life-Limiting Illness?
A life-limiting illness is a disease that likely won’t be cured, but a person can still live many years while managing it. People with these illnesses can receive special care to help them live as fully as possible.
Palliative Care: Supporting Quality of Life
Palliative care is a type of support for people with life-limiting illnesses. It aims to improve quality of life by managing symptoms, offering emotional support and helping with future planning. This care can be received at any stage after diagnosis and can continue alongside other treatments.
Difference Between Palliative Care and End-of-Life Care
Palliative care and end-of-life care are related but different. End-of-life care is a part of palliative care specifically for the final weeks or months of life. It focuses on managing symptoms and providing support through a team of healthcare professionals and it can be given at home or in specialised facilities.
Barriers to Palliative Care for People with Disability
People with disability often face challenges in accessing palliative care, such as:
- Lack of awareness about palliative care
- Communication issues between care providers and individuals
- Assumptions about the competence of people with disability
- Diagnostic overshadowing (misrepresenting symptoms to the disability)
- Physical barriers (access, mobility, transport)
- Distrust of health services
- Insufficient support for carers and families
- Lack of coordination between health, disability, and aged care services
- In community settings, lack of support for dying in the place of choice
By addressing these barriers through targeted support and interventions, people with disability can receive the palliative care they need and deserve. This improves their quality of life and provides comfort during challenging times.
Advanced Care Planning
Ensuring that people with disability can access quality palliative and end-of-life care is crucial, especially during Advanced Care Planning (ACP). ACP helps individuals plan care for the future. It can be done at any time by documenting choices about treatment and interventions if diagnosed with a life-limiting illness. This document, called an advance care directive or living will, is available to doctors through the person’s My Health Record. Providers supporting a person with a disability need informed consent to participate in health-related discussions and must consult with the individual’s medical decision-maker. There are useful websites, such as Advanced Care Planning Australia, for exploring ACP options, which vary by state and territory.
The Palliative Care Journey
Everyone’s palliative care journey is different. For people with disability, a journey map helps support services, health practitioners, family and the individual work together to avoid hospitalisation. A palliative care team includes medical, nursing and allied health professionals. Here is a general map:
Life-Limiting Illness Diagnosed
Consider Palliative Care
Palliative Care Services:
Relieve pain and symptoms
Plan future medical treatments
Provide emotional, spiritual and psychological support
Help families discuss sensitive issues
Support cultural obligations
Offer counselling and grief support
Refer to respite care services if needed
Monitor Progress
Approaching End of Life
End of Life Care Services:
Manage and relieve symptoms
Involve a multidisciplinary team
Provide care at home, hospital, hospice or residential aged care home
Collaborate with co-residents and disability workers for people with disability
Review and Adjust Care
Person Dies
Resources and Tools
Often, the focus is solely on the person in palliative care, leading Support Workers to neglect their own well-being as the process can be overwhelming for everyone involved. There are many tools and resources available for families, carers, and support workers assisting people with disability who have life-limiting illnesses or need end-of-life care. Palliative care varies by state and territory, so look for information specific to your region. To learn more about palliative care and advanced care planning in your area, visit Palliative Care Australia, consult with your care provider or call 1300 900 09. These steps can help ensure you or your loved ones receive the best possible care tailored to your needs and preferences.
We acknowledge the Traditional Custodians of the lands on which we live and work, and pay respect to Ancestors, Elders both past, present and the emerging Jarjums.
