The Last Hours, the Death, and the First Two Days

The last hours, the death itself, and the first two days: what to do and what not to

Here is the thing that nobody tells people and that causes the most avoidable distress.

When somebody dies at home as expected, nothing needs to happen quickly.

Not an ambulance. Not CPR. Not a rush. There is no clock running. You can sit with the person. You can ring somebody in an hour. Families can come. If a worker is alone in a house at 4am and somebody has died, the correct immediate action is to make a note of the time and then take a breath.

What happens instead, over and over, is that somebody panics and rings 000. Paramedics then arrive to a death they are obliged to respond to, sometimes attempt resuscitation on a person who had a plan specifying they did not want it, and a quiet death in a familiar bedroom becomes a resuscitation attempt followed by a transfer and a coronial question.

That is preventable with one sheet of paper on a fridge and one conversation in advance.

This guide covers the last hours, the death itself, and the two days afterwards — including the parts nobody prepares for, like who is allowed to confirm that somebody has died and why that matters at 4am.

We are a New South Wales disability provider, and we have been in houses on the night this happens. We are not a clinical service, and nothing here is medical or legal advice. Verification and certification of death, and coronial reporting, are governed by law and clinical process — establish the local arrangements in advance with the palliative care service and the GP rather than working it out on the night.

The final hours

The signs of the last days are set out in the recognising-dying guide here. In the final hours, what families and workers most need is to know what is normal, because almost all of it looks alarming and almost none of it is an emergency.

Breathing changes. It becomes irregular. There are long pauses — sometimes twenty or thirty seconds — followed by several rapid breaths. Families watch the gaps and count them. It can look like a struggle and generally is not.

Noisy breathing from secretions. Addressed in the symptom management guide. The important thing is that there is good reason to think it causes the person little or no distress, because by this stage they are usually deeply unconscious. It is far worse for the people listening. Repositioning often helps.

Cool, mottled, bluish or purple hands, feet and knees as circulation withdraws to the core. The skin may look blotchy or marbled.

Reduced or no urine output.

Unresponsiveness, though hearing is often thought to persist, which is a reason to keep talking to the person and to be careful what is said in the room.

Sometimes a brief period of alertness — a few minutes of apparent clarity, recognising somebody, saying something. Families find this bewildering and sometimes read it as recovery. Warn them in advance that it happens.

And then the breathing slows and stops.

The moment itself is often unclear. This is worth saying plainly because it causes real anguish. The gaps between breaths become so long that people repeatedly think the person has died and then they breathe again. There is frequently no clear moment, and families who were watching for one feel they missed it. Tell them beforehand that it is usually like this.

The sequence when somebody dies

1. Note the time. Approximate is fine. Write it down.

2. Do not call 000, if this is an expected death with a plan in place. Calling an ambulance to an expected death triggers a response that nobody wants.

3. Do not start CPR. For an expected death with a resuscitation plan, CPR is not indicated and performing it is a harm.

4. Do not move or wash the person yet, and do not remove any lines, catheters, syringe driver or dressings. Leave things as they are until whoever is verifying the death has attended. If the family have cultural or religious requirements about care of the body, those come next, not before.

5. Let people be with them. There is no hurry. Family may want to sit, to hold a hand, to talk, to cry, to be alone with them. Housemates may want to come in. Give it as long as it takes.

6. Ring the number on the plan. Usually the community palliative care service, or the GP, or the after-hours service, in the order the plan specifies. Tell them the person has died and what time.

7. Ring the family, if they are not present, and the on-call manager.

8. Then the rest, below, over the following hours and days.

That is the whole of the urgent part. Everything else can wait.

Verification and certification: two different things

This confuses nearly everybody and the difference has practical consequences at 4am.

Verification of death is the confirmation that the person has in fact died. It must happen before a funeral director will move the body.

Certification of death is the completion of the medical certificate of cause of death, which must be done by a medical practitioner. The funeral director needs it to proceed, and it is required for the death to be registered.

The practical importance of the distinction is this: in New South Wales, arrangements exist for verification of an expected death in the community to be undertaken by a registered nurse in defined circumstances, rather than requiring a doctor to attend. Where that applies, a visiting palliative care nurse can verify at 4am and the family are not sitting with the body waiting for a GP to arrive in the morning.

Whether it applies, and who will do it, depends on the local service and the arrangements in place for that person. Which produces one of the most useful questions to ask in advance:

“When this person dies, who will verify the death, and who will certify it — and what happens if it is the middle of the night or a public holiday?”

Ask it weeks early. If nobody can answer, that is a gap, and the consequence of the gap is a family waiting hours with a body in a bedroom because there was no plan.

A doctor who has been involved in the person’s care can usually certify without the death becoming a coronial matter, provided the death was expected and the cause is known. Which is another reason the GP’s involvement in the final weeks matters: a GP who has not seen the person for two years may not be able to certify, and the death then becomes reportable to the coroner by default.

When a death must be reported to the coroner

A death is generally reportable to the coroner where it was unexpected, the cause is unknown or unclear, no doctor is able to certify the cause, the death was violent or suspicious, it occurred in circumstances the law specifies, or it followed an incident or accident.

The practical implication for a planned death at home: the single most effective way to avoid an unnecessary coronial referral is to have a doctor who has recently been involved in the person’s care, who knows the diagnosis, and who is available to certify. Where that is in place, an expected death from a known cause is ordinarily certified without coronial involvement.

And if the coroner is involved, it does not mean anybody has done anything wrong. It means the law requires the cause to be formally established. It does mean a delay, and possibly a post-mortem examination, which families should be told about honestly because the uncertainty is worse than the information.

The NDIS obligation that providers get wrong

This one matters and it is frequently misunderstood.

The death of a participant is a reportable incident category under the NDIS Quality and Safeguards Commission’s framework, and a registered provider must notify the Commission within 24 hours of becoming aware of it. A follow-up report is generally required within five business days.

The common error is assuming that an expected death from a known illness does not need reporting. Do not assume that. The obligation sits on the provider, the timeframe is short, and the consequence of not notifying is a compliance problem on top of everybody’s grief. The safe course — and the one we would advise any provider to take — is to notify within 24 hours and let the Commission determine what follow-up it needs, rather than deciding for yourself that an exemption applies.

Check the Commission’s current detailed guidance for reportable incidents, because the detail is updated, and build the notification into the house’s end-of-life checklist so it is not left to somebody’s memory on the worst day of their year.

The other reportable incident categories, for context, all carry a 24-hour timeframe: serious injury of a participant, abuse or neglect including allegations, unlawful physical contact or assault, sexual misconduct including allegations, and any incident involving harm or risk of harm. Unauthorised use of a restrictive practice is five business days, or 24 hours where harm or risk of harm occurred.

And a separate point worth making: if a restrictive practice was in use at the time of death — a restraint, sedation, an environmental restriction — that is a matter to be clear and prompt about, and the provider should expect questions.

Cultural, religious and personal requirements — known in advance

This is the thing most likely to be got wrong, and it is entirely preventable.

Many traditions have specific requirements about what happens to a body, how quickly, who may touch it, which direction it faces, whether it should be washed and by whom, whether it should be left alone, how soon burial or cremation should occur, and what prayers or rituals are required.

None of that can be worked out at 4am. It must be recorded in the person’s advance care plan, and every worker should know where to find it.

What to have written down:

• Any religious or cultural requirements about care of the body
• Whether a particular person, minister, elder or community member should be called, and their number
• Whether anybody should be present or absent
• Whether the family wish to wash or dress the person themselves, which many do and which is a right rather than a favour
• Timing requirements
• Whether there is a preferred funeral director
• Burial or cremation, and any known wishes about the funeral
• Whether the person expressed anything themselves about any of this

And for a person with no family, which is a real situation in this sector: who makes these decisions, whether a public trustee or guardian is involved, and whether the person ever said anything to a worker that should be recorded and honoured.

The first two days

Roughly in order, and none of it is urgent in the first hours.

Time with the person. As long as people want. There is no rule about this and nobody should be hurried.

Verification, as above.

The funeral director. They can be called once the death has been verified, and they will advise on what they need. In most cases the funeral director handles registering the death with NSW Registry of Births, Deaths and Marriages, and will obtain the death certificate.

Certification by a doctor, which the funeral director needs.

Telling the housemates, properly, in a format they can use. This is covered in its own guide here and it is the thing most consistently done badly.

Telling the workers — all of them, including those not on shift and those on leave. A worker who turns up for a shift and finds out from the whiteboard has been treated badly.

Notifications, over the following days:

• The NDIA, because the plan ends on death and there are final claiming consequences
• Centrelink and Services Australia
• Medicare
• The person’s GP and specialists, if they do not already know
• My Aged Care, if relevant
• Any guardian, financial manager, public trustee or advocate
• Other services — day programs, therapists, transport
• The landlord or SDA provider, as relevant

Belongings and the room. Slowly. The person’s belongings form part of their estate and are not the provider’s to distribute, so the correct approach is to secure them, make an inventory, and hand them to whoever is legally entitled — the executor, the next of kin, or the trustee. Do not clear a room quickly because a bed is needed. Housemates watching a room emptied the next day draw a conclusion about what they are worth, and they are not wrong to.

Organ and tissue donation is generally not applicable following an expected death at home, but if the person had registered a decision it should be checked rather than assumed.

What workers should do, and what they need

At the time: stay calm, note the time, follow the sheet on the fridge, ring the number, do not call 000, do not start CPR, do not move or clean the person, let people be with them, and look after whoever else is in the house.

Afterwards: write a factual account while it is fresh — what happened, times, who was present, who was called and when. It may be needed for the Commission notification, and memory degrades.

And what the worker needs, which is covered properly in its own guide here: acknowledgement, a debrief, time, and permission to be upset. A worker who has done personal care for somebody every Tuesday for eleven years is bereaved, and the sector routinely treats that as not counting.

The sheet that should be on every fridge

Write this out, for any person approaching the end of life, before it is needed:

• This is an expected death. Do not call 000. Do not commence CPR.
• The GP’s written statement to that effect, and the resuscitation plan, and the ambulance palliative care plan if there is one
• Who to ring, in order, with numbers that work at 3am
• Who will verify the death, and the arrangement for nights and public holidays
• Who will certify, and their number
• Cultural and religious requirements, and who to call
• Family contacts, in order
• The on-call manager
• The funeral director, if one has been chosen
• The reminder to notify the NDIS Commission within 24 hours
• A note that nothing needs to happen quickly

That sheet is the most useful document in this entire library. It takes twenty minutes to write and it prevents almost everything that goes wrong on the night.