Palliative Care guides

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Most of what makes dying bearable is not complicated. It is anticipated

The Australian Institute of Health and Welfare looked at where people with life-limiting conditions actually die. Among those receiving specialist palliative care, 67 per cent died as admitted hospital patients — and of the four fifths who had not been in residential aged care, 63 per cent were admitted in their final week of life. Some of those admissions were right. A great many are the signature of a death recognised too late to arrange anything else, because by the time anybody says out loud what everyone can see, the only remaining option is an ambulance. For people with disability this happens more, and the reason is specific: recognising dying normally means comparing somebody to how they were, and a person who has always needed full assistance cannot become dependent. Add a decline unfolding across years, progress notes nobody reads longitudinally, and a history of surviving eight previous chest infections, and the trajectory becomes genuinely invisible. These thirteen guides are about the parts that can be anticipated instead — the four-second question that triggers everything, pain assessment in somebody who cannot report pain, the medications that have to be in the house before the night they are needed, who is legally allowed to decide what, and the people left afterwards whose grief nobody counts. Every figure is sourced, and the registered provider behind them is named in the footer.

63%Of hospital deaths were admissions in the final week

CapacityThe requirement that closes two doors at once

DisDATThe baseline almost nobody writes down

24 hrsTo notify the Commission of a participant death

Recognising it, and getting help

The question that takes four seconds, and the referral that should happen earlier

Of the people who died in hospital under a specialist palliative care service, 63 per cent were admitted in their final week. That is largely a measure of dying being recognised too late to arrange anything else.

Guide · 15 min readRecognising That Somebody Is DyingA person who has always needed full assistance cannot become dependent, so the signal the rest of medicine relies on is unavailable. The surprise question, the four trajectories, and SPICT-4ALL.

Guide · 14 min readGetting a Referral: Who Refers and What the Service DoesMost palliative care is delivered by GPs, not specialists. What to put in a referral for somebody with no prognosis — and the one question that decides whether home is possible.

Pain, symptoms and food

The clinical ground, and the conversation families cannot bear

People with intellectual disability do not feel less pain — they are less able to report it. And the evidence on feeding at the end of life says something families find almost impossible to hear.

Guide · 15 min readPain in Somebody Who Cannot Tell YouThe myth that does the most damage, the five-level assessment hierarchy, the Abbey Pain Scale and PAINAD — and DisDAT, which is not a score but the baseline nobody writes down.

Guide · 15 min readSymptoms at the End of Life: What Helps and Who Can Do ItAnticipatory medications have to be in the house before they are needed. A handheld fan does more for breathlessness than people believe. And mouth care is the most neglected comfort there is.

Guide · 15 min readEating, Drinking and Tube Feeding at the End of LifeIn advanced dementia, tube feeding does not prolong survival and increases aspiration and pressure injury risk. But that evidence is about dying, not about disability — and the distinction matters.

Decisions, and the law

Who decides, what binds, and the option many people cannot access

An advance care directive can only be made by an adult with capacity, and nobody can make one on their behalf. The same rule, in a different statute, closes voluntary assisted dying to a large part of this population.

Guide · 15 min readAdvance Care Planning in NSW: Directives, Guardians and PlansA directive binds and requires capacity. A plan guides and does not. For most people with significant intellectual disability the plan is the available instrument, and almost nobody uses it.

Guide · 14 min readVoluntary Assisted Dying in NSW: The Law and Who It ExcludesOnly the person themselves can request it, and capacity must be maintained throughout. Both arguments set out fairly, and the corollary that follows for everybody who cannot access it.

The house, the death, and the hours after

The operational detail, and the sheet that should be on every fridge

An expected death is not an emergency. Do not call an ambulance. The reason people do is that nobody wrote down what to do instead.

Guide · 15 min readDying in a Group Home: Can the House Actually Do It?Six questions decide it, and most providers never assess them until 3am. The scope of practice line drawn properly, the workers who should be allowed to decline, and the other residents.

Guide · 15 min readThe Last Hours, the Death, and the First Two DaysWho verifies a death and who certifies it, why that matters at 4am, the 24-hour NDIS obligation providers get wrong, and the twenty-minute document that prevents most of it.

Grief, families and everybody else

The losses that get recorded as behaviour, and the ones that get no name at all

Research found that exposure to bereavement cues aids recovery while exclusion makes complicated grief more likely. Protecting somebody from a death does the opposite of protecting them.

Guide · 15 min readGrief and Intellectual Disability: Telling, Funerals, Support“She won’t understand” and “it would be too much for her” cannot both be true. Benevolent exclusion, the words to use, and the losses nobody counts — including workers leaving.

Guide · 14 min readChildren With Life-Limiting ConditionsA child with severe cerebral palsy and recurrent aspiration belongs in paediatric palliative care and nobody frames it that way. Parallel planning, the NSW programme, and the siblings.

Guide · 14 min readWhen the Carer Is the One Who Is DyingAn 82-year-old mother with terminal cancer and a 52-year-old son who has lived with her all his life. The most predictable preventable harm in this sector, and how to avoid it.

Guide · 14 min readAfter the Death: Housemates, Workers and the RoomThe formal grief belongs to the family. Three housemates and a worker of eleven years are told theirs does not count. Why the debrief must be separate from the incident review.

If you read nothing else here

Four things worth doing this week

Three themes run through these guides. The things that make a death go well are decided weeks or months in advance and cost very little. The instinct in the moment is frequently the wrong one — calling an ambulance to an expected death, skipping insulin because somebody is not eating, protecting a person from news they already sense. And the grief of everybody who is not immediate family — housemates, workers, siblings — is real, is routinely recorded as behaviour, and has no name in this sector.

Ask the surprise question out loud, at the next review. Would you be surprised if this person died in the next twelve months? If the answer is no, that is the trigger for a palliative care referral, an advance care plan and anticipatory medications — and it takes four seconds to ask. Write the baseline down. What this person looks like when they are content, and when they are distressed, in the DisDAT format. Nothing in pain assessment or in recognising dying works without it, and almost nobody has one. Put one sheet on the fridge saying this is an expected death, do not call 000, do not start CPR, here are the numbers in order, and nothing needs to happen quickly. Twenty minutes to write; it prevents most of what goes wrong on the night. And find out who the person responsible is — because a person whose only relative was their mother may have nobody, and discovering that during the week of her funeral is both appalling and entirely avoidable.