Stage 06 · End of life
The decisions you will be asked to make. Worked through before they are put to you under pressure.
The families who come through this least damaged are the ones who named what was happening before it happened, and had the conversations rather than deferring them. Five sections. Twenty-two specific items. Two pages.
A planned conversation is clearer than a crisis phone call. The decisions named in advance are the ones you can think through. The decisions encountered in a corridor, for the first time, with a clinician you have just met, are not.
DCC clinical guidance · April 2026
What’s inside
Five sections. Twenty-two items. One advance care record.
Tick each item when you have thought it through, or acted on it. Bring the advance care record to any clinical meeting. The point of this checklist is not to rush you — it is to make sure nothing is left until it has to be decided in an emergency.
- 014 items
The DNACPR decision — what it means and what it does not.
DNACPR is not ‘giving up.’ It is a decision about one specific intervention. The frame the clinical team uses: what would CPR do to them, rather than for them? Where the order is held, and who must be consulted before it is signed.
- 025 items
Treatment escalation — the five conversations to have in advance.
Infections. Nutrition. Hospital admission. Preferred place of death. A planned meeting with the GP and care home nurse to agree the shared approach to each — before any of them is the question of the moment.
- 034 items
Comfort and pain management — what to ask for, specifically.
How the care team assesses pain in someone who cannot self-report. The validated tools they should be using. Whether community palliative care nurses can be involved without a hospice transfer. Naming the specific changes you have observed, not a general worry.
- 044 items
Practical preparation — before, not during.
Identifying a funeral director. Locating the will, the LPA, the advance statement. Understanding the Tell Us Once service. Telling the home whether you wish to be present at the end — or what your wishes are, if you cannot be.
- 055 items
After the death — the first days, in roughly the right order.
Certification, registration, ten copies of the death certificate. Notifying the DWP, the bank, HMRC, the pension provider. The LPA ending at death and authority passing to the executor. And: a written reminder to be patient with yourself before any major decision.
The most-asked question
DNACPR — what it is, and what it isn’t.
What it is not
It is not a decision to withdraw care, stop treatment, or give up. Comfort care continues. Pain management continues. The relationship continues.
What it is
It is a decision that CPR — given your parent’s current condition — is likely to cause distress rather than benefit. One specific intervention, considered honestly, in advance.
The five conversations
Decided once, calmly. Not five times, in five emergencies.
Each of these arises before or during the final weeks. Each can be thought through in advance and recorded on the advance care page of the checklist.
Infections — hospital, or palliative treatment at the home?
Hospital admission with advanced dementia often causes additional distress without proportionate benefit. Treating infection at the home is usually preferable.
Nutrition — what reduced appetite means, and what it does not.
Reduced appetite and stopping eating are natural at end of life. Tube feeding is unlikely to extend life and may cause distress. Comfort care: food and fluids for as long as safe; the mouth kept comfortable.
Hospital — when it helps, and when it does not.
Acute treatable conditions — a fractured hip — need hospital. Infections, deterioration, and end-of-life changes are usually better managed in a familiar environment.
Preferred place of death — named, recorded, agreed.
Most people prefer to die in a care home or at home rather than hospital. Ask whether the care home can support end-of-life care on site, and what would change that.
A planned meeting — the GP, the care home nurse, you.
One conversation. The agenda: what acute events are likely, and what is our shared approach to each? Held now, calmly. Not later, in an emergency.
Why it matters now
Naming what is happening before it happens.
The hardest conversations are the ones you have already had. They do not become easy. They become possible to have at all.
What this checklist will not do
- × Tell you when the time is. The clinical team will see the signs; you will see the change.
- × Replace a conversation with the GP. Print it; bring it; ask the questions in person.
- × Pretend that planning makes this easy. It does not. It makes it possible.
What it will do
- + Name the five decisions in advance, so none of them arrives as the first time you have considered it.
- + Give you an advance care record — one page — that the GP, care home, and family share.
- + Cover the practical steps after the death, in roughly the right order, so you are not searching for them in the first week.
The conversation is hard. Having it once, calmly, is easier than having it five times under pressure.
Print the checklist. Take it to the GP. Take it to the care home. Decide once, together, before the moment it is asked of you.