Advance Care Planning Checklist for Northern Ireland
Most families don't plan because they don't know where to start. Northern Ireland's fragmented system — common law ADRTs, the older EPA framework, five separate Health and Social Care Trusts, no Tell Us Once service — makes the starting line feel impossibly far away.
It isn't. Advance care planning in NI breaks down into four domains, each with concrete actions you can complete without a solicitor.
Domain 1: Personal Wishes
Before touching any legal document, get clear on what actually matters to you. This is the foundation everything else rests on.
- Write down your treatment preferences. Not in legal language — in your own words. What would make life worth living? What would make continued treatment unbearable? What matters more: length of life or quality of life?
- Consider specific scenarios. Advanced dementia where you no longer recognise your family. A stroke leaving you permanently unable to communicate. A terminal diagnosis with months to live. Your answers may differ across these situations.
- Record your values and beliefs. Religious commitments, cultural practices, spiritual preferences. These won't be legally binding, but they guide clinical teams making best-interests decisions about treatments your ADRT doesn't cover.
- Document funeral and organ donation preferences. Since Dáithí's Law came into effect on 1 June 2023, Northern Ireland operates an opt-out organ donation system. If you want to opt out, or if you want to opt in for specific organs only, record that decision on the NHS Organ Donor Register and tell your family.
Domain 2: Legal Documents
Northern Ireland's advance care planning framework has two principal legal instruments, covering two separate domains, alongside non-binding advance statements:
Advance Decision to Refuse Treatment (ADRT):
- [ ] Draft the document specifying which treatments you refuse and under what circumstances
- [ ] Include the life-at-risk clause if refusing life-sustaining treatment
- [ ] Sign and date the document
- [ ] Have it witnessed by an independent adult (not a beneficiary or appointed financial attorney)
- [ ] Discuss the document with your GP to ensure the clinical language is precise
- [ ] File a certified copy with your GP surgery for scanning into your electronic health record
- [ ] Request an emergency alert flag on your patient file
- [ ] Distribute copies to your next of kin, any EPA attorney, and relevant HSC Trust contacts
Enduring Power of Attorney (EPA):
- [ ] Complete the EPA using the prescribed form under the EPA (NI) Regulations 1989
- [ ] Both donor and attorney sign with valid witnessing
- [ ] Store the original securely — it doesn't need to be registered until you begin losing capacity
- [ ] Understand the limitation: your EPA attorney handles finances and property only, not healthcare
Domain 3: Clinical Coordination
Your documents are only useful if clinical teams can find them and understand them.
- [ ] Book a GP consultation specifically to discuss your ADRT. Bring a draft to review together. Your GP can help refine vague language into clinically precise refusals.
- [ ] Ask the practice manager to confirm the ADRT has been uploaded to your electronic health record and that an emergency alert is visible to out-of-hours teams.
- [ ] If you're under specialist care (oncology, neurology, palliative care), provide a copy to the relevant HSC Trust team. Hospital admissions pull records from different systems than GP surgeries, and your document needs to be findable in both.
- [ ] Discuss a ReSPECT form with your clinical team if you want broader emergency care preferences recorded alongside your legally binding ADRT.
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Domain 4: Family Communication
The hardest domain and the one most people skip entirely.
- [ ] Have the conversation. Tell the people closest to you what you've decided and why. This isn't about getting their permission — it's about making sure they understand your choices and won't fight them when the time comes.
- [ ] Explain the next-of-kin limitation. Many families assume the person named as next of kin at hospital admission can make medical decisions. They can't — not in Northern Ireland. Your ADRT is the only mechanism with legal force for your treatment refusals, and your family needs to know that.
- [ ] Tell them where your documents are. A living will locked in a filing cabinet at home while you're admitted to Altnagelvin or the Royal Victoria is as useless as no living will at all. Make sure at least two trusted people know where to find the original and where copies are filed.
- [ ] Set a review date. Mark your calendar to revisit your ADRT annually, or after any major health change. Review it together with your family so everyone stays aligned.
The Annual Review
Advance care planning isn't a one-time task. An ADRT reviewed and re-signed annually is dramatically harder to challenge in court or in a clinical setting than a document signed once and left untouched for years.
At each review:
- Confirm your treatment refusals still reflect your wishes
- Sign and date a review log showing you've reconsidered and reaffirmed
- Update any clinical language if your health circumstances have changed
- Redistribute updated copies if the content has changed
Our Northern Ireland Advance Decision to Refuse Treatment guide provides the complete toolkit for every domain — drafting templates, a GP consultation worksheet, a family conversation guide, a document distribution log, and an annual review tracker designed specifically for Northern Ireland's common law requirements.
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