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, include a clear statement in your ADRT that addresses this interaction directly. Something like:
"I consent to the short-term continuation of ventilation and/or other organ-support measures after brain-stem death has been confirmed, solely for the purpose of organ donation. This does not alter my refusal of life-sustaining treatment while I am alive."
This removes ambiguity for the clinical team and gives your family a clear written basis for understanding why ventilation continues after death.
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If You Do Not Want to Donate
If you have opted out of organ donation (or want to opt out), you can record this on the NHS Organ Donor Register and also include a statement in your ADRT or Advance Statement. Your Health and Welfare attorney, if you have a registered LPA, can also communicate this decision.
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 always approach the family to discuss donation. If the family objects, donation rarely proceeds in practice — NHS Blood and Transplant's policy is to seek family agreement, even when the deceased was a registered donor.
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
- 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.
- Add a donation clause to your ADRT (or a separate Advance Statement) that specifies whether you consent to short-term organ support after death.
- Tell your Health and Welfare attorney about your donation wishes, so they can communicate them to the clinical team.
- Tell your family. The specialist nurse will always ask them.
Our England Advance Directive guide includes a section on aligning organ donation registration with your ADRT, with template wording for the donation continuation clause and guidance on communicating your wishes to both clinical teams and family.
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