Advance Directive and Organ Donation UK

An ADRT and Organ Donation Registration Are Separate Decisions

England operates an opt-out organ donation system under the Organ Donation (Deemed Consent) Act 2019. Adults are presumed to consent to organ donation after death unless they have opted out or fall within certain excluded groups. A separate ADRT, created under the Mental Capacity Act 2005, governs treatment refusals while you are alive but lack capacity.

The two systems address different moments — the ADRT covers treatment decisions before death, and organ donation applies after death has been confirmed. But they can create conflicts that need to be resolved in advance.

The Potential Conflict

The tension arises in a specific clinical scenario: a patient has an ADRT refusing life-sustaining treatment (including mechanical ventilation), but is also registered as an organ donor. To retrieve viable organs, the clinical team may need to maintain the patient on a ventilator for a short period after brain-stem death has been confirmed — which could appear to contradict the ADRT's refusal of ventilation.

Legally, the position is relatively clear. An ADRT governs treatment refusals while the person is alive. Once death has been confirmed using neurological criteria (brain-stem death testing), the person is legally dead, and the ADRT no longer applies. The ventilator is no longer providing treatment to a living patient — it is preserving organs for transplantation in a deceased donor.

However, families and clinical teams can still find this distinction distressing in practice. The patient looks alive on the ventilator. The family may have spent weeks advocating for the ADRT's treatment refusals to be honoured. Being told that ventilation will now continue for organ retrieval can feel like a contradiction.

How to Align Your Documents

If you want to donate organs and also have an ADRT refusing life-sustaining treatment, tell the clinical and organ-donation teams about both decisions. Do not use the ADRT to give consent to treatment: it records refusals. Ask the specialist organ-donation team how any treatment refusal could affect a potential donation pathway.

If You Do Not Want to Donate

If you have opted out of organ donation (or want to opt out), record this on the NHS Organ Donor Register. Tell your family and the clinical and donation teams as well; your Health and Welfare attorney, if you have a registered LPA, can communicate your wishes before death.

Under the deemed-consent system, your opt-out takes precedence. Clinicians must check the Organ Donor Register and speak with the family before proceeding with any organ retrieval.

The Family's Role

Even under the opt-out system, specialist organ donation nurses will approach the family to discuss donation. If the family objects, professionals discuss the objection sensitively; the family has no legal right to veto the donation, although there may be cases where donation is not appropriate because of the distress it would cause.

This is another reason why the end-of-life conversation matters. If your family knows that you wanted to donate, they are far more likely to support the process. If they are surprised by the request in the middle of bereavement, they are more likely to refuse.

Including your organ donation wishes in the same conversation where you discuss your ADRT and LPA ensures everyone is aligned before a crisis.

The Practical Steps

1. Check your organ donation registration. Visit the NHS Organ Donor Register to confirm or update your preferences, including whether you want to donate all organs or only specific ones.
2. Record your donation wishes in the NHS Organ Donor Register and tell the clinical and donation teams how those wishes relate to your ADRT.
3. Tell your Health and Welfare attorney about your donation wishes, so they can communicate them to the clinical team.
4. Tell your family. The specialist nurse will always ask them.

Our England Advance Directive guide includes guidance on ADRT drafting and communicating your wishes to clinical teams and family.

See more England guides →