Palliative care

Palliative care in the remote setting is delivered by primary health care providers, community organisations, and family
Palliative care team (telehealth) can support a person to die on country
Early care planning important — do not delay palliative care input because the person is still pursuing disease directed treatment

Family meetings important. Consider

Cultural advice from ATSIHPs — any taboos around death
Is interpreter needed
Are the right people involved — key family members or decision makers
What do person and family want to know. Allow enough time to tell whole story, family may not fully understand diagnosis, past treatment
Tell person and family about changes and what to expect, especially toward the end — person will get sicker, condition can change very quickly

Plan ahead

Advance Care Plan or Advance Health Directive records person's decisions about where they want to die/finish up, their care and treatment — what they do or don't want
Many very sick people don't want lots of tests or extra trips to hospital — only do if needed to make decisions about care and treatment
Find out what the hospital plan is by checking with palliative care team/specialist and talk to the family about what treatment the hospital can do now

Sometimes when patients are very sick there is no more treatment that hospital can do

Coordinated primary and specialist care, dedicated family carers, home care supports, medicines and equipment (local delivery options)
A plan to get home again if they are in hospital
If they want to die/finish up on country, put in plan that they should not go back to hospital once they get very sick. Talking about this with family ahead of time is important so everyone knows

Putting an alert in electronic database is good for the retrieval doctors to understand what the person wants, if they get sicker. They can change their mind — will need to tell hospital when this happens

Review management plans often, change as needed

Respite options. Supports for person, family, community
Housing and equipment needs. Referral to OT for modifications and aids
Centrelink, superannuation entitlements, wills — do paperwork early while person has capacity
If not culturally appropriate for person to die at home other shelter will be needed — talk with ATSIHP, family elder

Ask about symptoms — may include pain, nausea, trouble breathing, sleeping problems, fatigue, bowel problems
To understand a person’s performance state and prognosis, ask — is the person losing a lot of weight, are they spending more than half of the day lying down
Consider medical and non-medical methods for managing symptoms
Non-medicine treatments can help — company, massage, music, listening
Involve other health professionals to improve comfort for person and family — traditional healers, physiotherapist for mobility, OT for daily activities, speech pathologist for swallowing, nutritionist for dietary advice
Check medicines for side effects or interactions, if still needed
Only give medicines most important for palliative care

Assess pain by asking how bad it is, how they look, how they move around, what they can or can't do
Chronic pain needs regular medicines at same time each day, and extra for when pain breaks through usual pain control. Palliative care team will advise
Many people are scared of strong pain medicines. It is important to reassure them that these medicines are safe and can help sick people to do the things that are important to them
Information for carer/family

Record what medicine person takes daily and how well it helps
Need to know how to use both regular and rescue/breakthrough pain medicines
How to accurately measure liquid medicines
Keep strong medicine safe in home, out of reach of children (eg locked tucker box)

Medicines

Don’t use repeated IM injections — they hurt
Put in butterfly needle or subcut cannula, preferably in upper part of arm. Can be used for injections and continuous medicines with syringe and battery-driven pump
Check that all medicines can be mixed together in same syringe before administration

Palliative care is associated with many different symptoms (eg respiratory, gastrointestinal, psychological etc)
May start with simple medicines (eg paracetamol)
Talk to palliative care team about dose for stronger pain medicines

Give regular short-acting opioids (eg 4 hourly morphine mixture) and extra ‘rescue’ doses for ‘breakthrough’ pain for 1–2 days to work out total amount of pain relief needed
Amount of pain relief is converted to equivalent doses of long-acting opioids (oral or patch)

Always have extra short-acting rescue medicine available for breakthrough pain (eg morphine mixture or oxycodone tablets)

Syringe Pump may be needed for medicines at end of life or if medicines for other symptoms are added
Pain medicine can cause constipation — always give regular bowel medicines (eg docusate and senna)

Palliative care team/medical consult about medicines to ease symptoms — Table 11.1

Table 11.1 Treating common symptoms at the end of life

Important to prepare family — see Loss and grief
Toward the end person gets weaker, stays in bed, stops eating and drinking, passes less urine. This is a natural process

Usually no need to give IV fluids or feed through nasogastric tube. Reassure the family that this is not needed

May have same level or increase in pain. If person can't speak — look for physical signs they are in pain, talk with family
Will get new symptoms (eg confusion, noisy breathing, sleeping more)
May see or hear deceased relatives — sign that person close to the end
Physical comfort is important (eg mouth care, pressure care)
If can't swallow — can give medicines subcut or under tongue

Check with doctor and family about plans for death certificate, before person dies
Consider removal of body — refer to local community protocol

Supporting resources