Palliative care at home

Most people, asked where they would want to be, say home. A much smaller number manage it, and the gap is usually not about medicine. It is about whether the practical scaffolding was put up in time.

This is a plain guide to what that scaffolding is.

This is general information, not advice. Palliative care is specialist clinical care and belongs with a palliative care team and a GP.

What palliative care actually is

It is care aimed at symptoms and quality of life for someone with a serious or life-limiting illness. Pain, breathlessness, nausea, appetite, sleep, anxiety. It is not restricted to the final weeks, it can run for months or years, and it can happen alongside treatment that is still active.

Two things follow from that, and both are worth saying to families who are hesitating.

Accepting a referral does not mean giving up, and it does not hasten anything. In practice people often feel considerably better once symptoms are being properly managed by a team whose whole job is symptoms.

And earlier is better. The families who manage a death at home well are almost always the ones who got the team involved early, while there was still time to plan calmly. The ones who struggle are usually the ones who were referred in a crisis.

What has to be in place

A specialist palliative care service involved. Community palliative care teams visit at home, advise on symptoms, and are the source of the after-hours support that makes nights survivable. Ask the GP or treating specialist for a referral.

An after-hours number that you have tested. The most frightening hours are between midnight and dawn, when the GP is closed and the instinct is to call an ambulance. Ambulances generally take people to hospital, which is often precisely what the person did not want. Get the number, write it on the fridge, and make sure everyone in the house knows it is the first call.

Medication in the house before it is needed. Palliative teams commonly arrange for anticipatory medicines to be at home in advance, so that if pain or breathlessness escalates at two in the morning there is something to give rather than a two-hour wait. Ask about this explicitly.

Equipment, early. A hospital bed if one is needed, a pressure-relieving mattress, a commode, an over-bed table, oxygen if it is required. All of it takes longer to arrange than families expect.

Nursing for the clinical work. Symptom management, injections and syringe drivers are nursing work, not support work. The boundary is set out in home nursing and support work and it should be explicit in the plan.

Someone there. This is the one that decides it more often than anything clinical. Which brings us to the person nobody assesses.

The carer is the load-bearing wall

A death at home is generally held up by one or two family members, and they are almost always more exhausted than they will admit.

What tends to break it is not a medical event. It is three weeks of broken sleep, and then a night where the person caring simply cannot do it any more. At that point everything goes to hospital at once.

So plan for the carer as deliberately as for the patient.

• Overnight support, so somebody sleeps. Often the highest-value thing you can arrange, and covered in what an overnight support shift involves
• Respite during the day, so the carer can leave the house
• More than one family member briefed, so it is not all one person
• Practical help with the ordinary things, because meals and laundry do not stop
• Permission, said out loud, to change the plan

That last point matters. Families make a promise about home and then feel they have failed if it becomes unmanageable. Deciding at week six that this is no longer working is not a broken promise, it is a reasonable decision made with better information than you had at week one.

Practical things worth doing early

Sort the paperwork while it is calm rather than in a crisis: advance care planning documents, any appointed decision-maker, and the details of who needs to be contacted. Our list of documents worth sorting before you need them is the place to start, and the palliative care team can point you to the right advance care planning forms for your state.

Ask about what to expect. Most families find the unknown far worse than the information, and palliative teams are used to being asked directly.

And ask what happens afterwards, practically, including who to ring at the time and what the immediate steps are. Knowing that in advance removes a great deal of panic from a moment that is hard enough.

Where support work fits

Not the clinical part. What a support worker provides is the ordinary human infrastructure around it: personal care done gently, clean bedding, food for whoever is in the house, a presence overnight so the family can sleep, and company for the person themselves.

The thing that matters most here is who it is. Nobody wants a stranger in the house in the last weeks of a life, and a rotating roster in this situation is actively cruel. It should be the same small Care Circle who already know the household, the names, and how this particular person likes things done.

For services in your area start at myagedcare.gov.au, and the Department of Health and Aged Care publishes palliative care program information. If you are trying to work out what to put in place, ring us and a person will answer. Arranging the nursing alongside the support, and holding the plan between them, is part of what we coordinate.