Doctors and pharmacists
Palliative care doctor
A doctor who specialises in comfort, symptoms and quality of life, and who is useful long before the end of life.
Palliative care doctors are specialists in symptoms and in what matters to you. The single most common misunderstanding is that involving them means giving up or that time is short. Guidelines place palliative care expertise inside the core ALS/MND team from early on, and people who meet them early usually wish they had done so sooner.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Symptoms that have not responded to the usual approaches, particularly breathlessness and pain
- Medication for saliva, cramps, anxiety and sleep
- Planning ahead, including what to do if things change suddenly
- Conversations about what you do and do not want, at your pace
- Support for the people around you, which is part of the specialty rather than an extra
- Access to hospice services, though what a hospice is and who can use it differs sharply between countries
When you might meet them
- Earlier than most people expect, and not as a signal about time
- When a symptom is not being controlled
- When you want to talk about what happens next without alarming your family
- When advance care planning is being discussed
- When breathing support decisions are being made
Things you could ask about
- Does seeing you change anything about my other treatment?
- What can you help with that my other doctors cannot?
- What should we have in place before we need it?
- Can my family talk to you separately?
Not to be confused with
Not the same as end of life care, and not the same as hospice admission. Palliative care is a specialty in symptoms and quality of life that can run alongside every other treatment you are having.