Palliative care is defined by the World Health Organisation as “an approach that improves the quality of life of patients (adults and children) and their families facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial, and spiritual.” Many neurological disorders are life-threatening and this approach is appropriate, in helping people with neurological disorders and their families to maintain as good a quality of life as possible and enable them to do the things they want to do.

Palliative care can be provided by a variety of health or social care professionals. Its purpose is to provide people with neurological disorders and their families or carers with the necessary information to fully participate in discussions about their condition, make informed decisions, set goals for their care, and effectively manage their symptoms, including pain or other issues. This approach to care should be provided by all services, neurology teams, hospitals and in primary care.

Individuals with complex issues may require additional advice and support. Palliative care teams with specialized expertise are equipped to provide support for individuals with complex issues, including the management of challenging symptoms such as uncontrolled pain. These services may be available in a variety of settings, including hospitals, nursing homes, and specialized units such as hospices. Such specialist care is often available, but in some countries or areas there may be limited availability and it is often disproportionately focused on patients with cancer and palliative care specialists may lack adequate training in the nuances of neurological illness, prognosis, and treatment. In many areas this specialist care may be integrated within the (paediatric) neurology team or services – an approach known as neuro-palliative care.

Palliative care:

  • May be appropriate for someone from soon after diagnosis to help with issues (such as the adjustment to a new diagnosis)
  • May be provided at home, in a hospital, nursing home, or hospice
  • Includes a wide multidisciplinary team including spiritual care, educational services, and social work, not only doctors and nurses.
  • May be involved at various times across a person’s care journey
  • Involves family and carers as well as the person with a neurological disorder
  • May help family members before and after a death cope with grief and bereavement

Palliative care is NOT:

  • Only when someone is dying
    • If there are needs, palliative care may help at any time
  • Only in a hospice facility
    • Proactive care may be provided in out-patient clinics
    • Home care may allow for care more consistent with a patient’s and family’s values
  • Only talking about death and dying
    • Encourages quality of life
    • Encourages living and participation within possibilities
  • To be confused with euthanasia or physician-assisted suicide
    • The aim of medication then is to end the person’s life, whereas in palliative care the aim of medication is to help with symptoms, such as pain

Many people – those with neurological disorders, their families, and even professional carers – are fearful of palliative care. However, this approach to care may be appropriate from diagnosis and not only near to the end of life. The aim is to enable people to live their lives, with their families and loved ones, and maintain their quality of life.

Professor David Oliver
Professor Benzi Kluger

June 2023