What does palliative care involve?

In the context of Parkinson's, palliative care principles can and should be applied by any team, anywhere, to support you, your carer and family. Everyone’s needs are different and palliative care provision varies both regionally and internationally. Your doctor will be able to advise on treatments and available services as your needs evolve.

Depending on where you live, palliative care may be provided by a range of doctors including a specialist in care of the elderly, a Parkinson’s specialist or a specialist in palliative care. In some countries Parkinson’s Disease Nurse Specialists (PDNS) may also be involved.

Many members of the traditional multidisciplinary team may still be involved in palliative care but the emphasis of their involvement is likely to alter. For example, a physiotherapist who previously has helped with mobility may now ease breathing by gentle chest physiotherapy. Similarly, a speech and language therapist who previously advised on communication may now advise on artificial feeding methods if swallowing is no longer possible.

For care to be as effective as possible it needs to be integrated so that all those involved work together as a team. This can be complex but increasingly there are palliative care strategies (also known as ‘care pathways’) in place which provide a structure for planning and delivering coordinated, seamless and prompt care, according to your evolving needs, ensuring too that all parties are fully involved. The degree to which the different elements of palliative care are integrated varies considerably across Europe, but where such integration exists, access to palliative care is usually simpler and care more effective.

Remember that sometimes the services and professionals who can help may not be labelled ‘palliative’. Usually palliative care includes:

• medication
• physiotherapy
• occupational therapy
• speech and language therapy
• complementary therapies
• psychological support
• diet and nutritional support.

You may also be able to access a range of other services such as day care facilities or a palliative care social worker who can assess needs, advise on financial and legal matters, and help with filling in forms. Various voluntary organisations also provide information and advice, a telephone helpline, volunteer and support group networks.

Care services and entitlements will vary depending on where you live. Some services may be state-funded but others may need to be paid for or will be dependent on your circumstances, so always check with the service provider, your care team or the relevant government office first. Your national Parkinson’s association may be able to provide information or you can check in your local library or on the Internet.