Advance Directives for Cancer and Motor Neurone Disease in Northern Ireland

A terminal diagnosis changes the calculation on advance care planning from "something I should probably do at some point" to "something I need to do now, while I still can." Cancer and motor neurone disease both follow trajectories that can strip capacity and communication at different speeds, and each requires a differently calibrated ADRT.

In Northern Ireland, where there's no Health and Welfare Power of Attorney to delegate medical decisions to a trusted person, the ADRT is the sole legally binding mechanism for recording your treatment refusals. After a serious diagnosis, getting this document right isn't a bureaucratic exercise — it's the only way to ensure your medical care reflects your wishes when you can no longer state them.

Cancer: When Capacity Remains but Prognosis Doesn't

Most cancers — even advanced ones — don't affect mental capacity directly. A person with stage IV lung cancer or metastatic bowel cancer may be fully competent to make decisions right up until their final days. This means the capacity window for creating an ADRT is typically wide.

The planning challenge with cancer isn't timing — it's specificity. Cancer treatment involves a cascade of decisions: surgery, chemotherapy, radiotherapy, immunotherapy, palliative interventions. At some point, continued treatment crosses a line from potentially curative to merely life-extending with diminishing quality of life.

An ADRT for someone with cancer needs to identify that line clearly:

• Specific refusals: refusing CPR in the event of cardiac arrest during a terminal phase, refusing mechanical ventilation if the prognosis is irreversible, refusing clinically assisted nutrition and hydration at a stage when the body can no longer process food
• Conditional language: "If my oncologist confirms that my cancer has progressed to a point where further treatment offers no realistic prospect of remission or meaningful recovery, I refuse the following treatments..."
• What you're not refusing: an ADRT doesn't have to refuse everything. You might want palliative chemotherapy to continue, or you might want pain management to be prioritised aggressively — include an advance statement alongside the ADRT to record these positive preferences (the statement isn't binding, but it guides clinicians on what you do want)

The conversation with your oncologist or palliative care consultant before drafting the ADRT is essential. They can explain which clinical scenarios are realistic for your specific cancer, what treatments would typically be offered at each stage, and what refusing each one actually means in terms of your comfort and survival.

Motor Neurone Disease: A Different Kind of Urgency

MND presents a fundamentally different planning challenge. The disease attacks motor neurons — the nerve cells that control voluntary muscle movement — which means communication ability itself is at stake. Someone with MND may lose the ability to speak, write, and eventually even use assistive communication devices, while their cognitive capacity remains fully intact.

This creates a cruel paradox: the person knows exactly what they want but can't tell anyone. And in Northern Ireland, with no healthcare proxy available to speak on their behalf, the ADRT must do all the speaking.

The priority treatments to address in an MND-specific ADRT:

• Non-invasive ventilation (NIV): many MND patients use NIV as respiratory muscles weaken; the ADRT should state at what point, if any, you'd want NIV withdrawn or not escalated
• Invasive ventilation (tracheostomy): a clear refusal of long-term invasive ventilation is one of the most common provisions in MND advance directives — it's a treatment that can sustain life for years but with a quality of life many patients find unacceptable
• Clinically assisted nutrition: as swallowing muscles fail, a PEG (percutaneous endoscopic gastrostomy) feeding tube is often recommended; the ADRT should state whether you'd accept this and under what circumstances you'd want it withdrawn
• CPR: at advanced stages of MND, some people choose to refuse CPR; if you do, state the circumstances clearly
• Antibiotics for chest infection: respiratory infections are a common cause of death in MND; some patients choose to refuse antibiotics for these infections as a natural endpoint rather than prolonging the dying process

Getting the Timing Right

For both conditions, the principle is the same: draft the ADRT while capacity is beyond question.

For cancer, that usually means shortly after diagnosis, before treatment fatigue and disease progression create uncertainty. Update it as your condition evolves — a refusal that made sense before chemotherapy might not reflect how you feel six months into treatment, or vice versa.

For MND, the window is dictated by communication ability as much as cognitive capacity. If you wait until you can't hold a pen or operate a keyboard, executing the document becomes far more complex (you can direct someone to sign on your behalf, but the process requires more careful witnessing and creates more room for legal challenge). Draft the ADRT while you can sign it yourself, unambiguously.

For any refusal of life-sustaining treatment, the ADRT must be in writing, signed and dated, witnessed by an independent adult (not a beneficiary or appointed financial attorney) who also signs and dates the document, and include the explicit "even if my life is at risk" clause.

Clinical Coordination

After the ADRT is signed, coordinate directly with your specialist team:

• Give a copy to your GP surgery for the electronic record with an emergency flag
• Give a copy to your oncologist or MND consultant — they need to know what's in the directive so they can structure future care recommendations around it
• If you're receiving palliative care, give a copy to the palliative care team — they often hold a parallel care record that hospital admissions teams check
• If a ReSPECT form is created for you, make sure the clinician leading that conversation has read the ADRT first, so the ReSPECT aligns with your legally binding refusals

The Northern Ireland ADRT guide includes a GP consultation worksheet and document distribution log designed for exactly this — ensuring every clinician who might be involved in your care has the directive before they need it.

See more Northern Ireland guides →