Palliative care

Palliative care is for anyone diagnosed with a life-limiting illness, regardless of age, from infants to the elderly. Palliative care follows a family-centred model, ensuring that not only the patient but also their family and care partners receive the necessary practical and emotional support (1). There is evidence that palliative care specialists in multidisciplinary PD clinics can improve the quality of life for both people living with Parkinson’s and their caregivers.

Palliative care, as defined by the WHO, aims to enhance the wellbeing of patients and their families dealing with serious illnesses (2). For individuals with advanced Parkinson’s disease (PD), this care involves early identification, thorough assessment, and effective management of symptoms like pain, fatigue, mobility issues, depression, and cognitive impairment (3).

Advanced PD also places a significant strain on caregivers. Research highlights the complexity and heavy burden of caregiving for PD patients (4).

Palliative care offered will be dependent on your individual needs and circumstances. It may include:

• Relief of pain and other symptoms
• Medication management
• Food and nutrition advice and support
• Care and education to support better mobility and sleeping
• Resources such as equipment needed to aid care at home
• Assistance for families to come together to talk about sensitive issues
• Links to other services such as home help and financial support
• Support for people to meet cultural obligations
• Support for emotional, social and spiritual concerns
• Counselling and grief support for the person with the illness and their family and carers
• Referrals to respite care services
• Bereavement care to the family and care partner once the person has died.

Palliative care is essential in helping individuals manage their illness, particularly in alleviating pain and symptoms, to ensure they live as well as possible. Palliative care is about much more than end-of-life care; it’s about enhancing quality of life at every stage of a serious illness.

• Early support: Palliative care can be beneficial right from the diagnosis of a life-limiting illness, not just at the end of life.
• Longevity of care: People can receive palliative care for an extended period, sometimes even years, alongside other treatments.
• Individualised approach: Every person’s situation is unique. Some might access palliative care intermittently, while others might have a continuous relationship with their care team.
• Planning ahead: Early access to palliative care helps in planning for the future, addressing the patient’s values, beliefs, and care goals.
• Comprehensive support: Palliative care goes beyond end-of-life care, offering necessary support to manage pain and symptoms throughout the illness progression.
• Aftercare: Palliative care also extends to supporting families and carers through grief and bereavement after the loss of their loved one.

How do I access palliative care? 

Many people receive palliative care from your local doctor (GP), who can also refer to other medical specialist, or health professional. In some states and territories, you or a family member may be able to refer yourself directly to palliative care services. 

If your symptoms become more complex, you may need a referral to a Specialist Palliative Care Service. 

To find services in your area, visit the National Palliative Care Service Directory. 

Palliative care is available to anyone with a life-limiting illness—not just cancer patients. It also supports people living with dementia, chronic conditions, degenerative illnesses or frailty. 

Most palliative care services are free, though there may be some costs for specific care or support. 

Palliative care involves a team of professionals working together such as palliative care doctors, nurses, GPs, allied health professionals like OT’s and physio’s, social workers and psychologists, pharmacists, and trained volunteers. 

Accessing palliative care services can make a significant difference in managing the symptoms of Parkinson’s, improving quality of life and maintaining independence.

It’s advisable to explore all available pathways to find the support that best suits your individual needs. Look to:

• getting a GP referral to an multidisciplinary team with Parkinson‘s experience
• your state-based Parkinson’s organisation for advice on services to access
• private health to see what is covered in relation to allied health consultations and expenses
• NDIS or My Aged Care plan supports.