Recent important Department of Health guidance on organ donation gives boards in England and Wales an excellent opportunity to receive up to date progress on donation activity in their trusts and to review how they can support a drive to further boost rates.

It is just over two years since the Organ Donation Task Force published its report containing 14 recommendations aimed at identifying obstacles to donation and solutions and to deliver a substantial increase in transplants in the UK, identified as having one of the worst records in western Europe.

One obstacle is centered around non-heartbeating donation (NHBD) and whether, prior to death, it is lawful for steps to be taken to adjust the care a willing donor receives to prepare for donation after death. Any concerns for clinicians or managers about the legality of taking appropriate steps can be dispelled by this guidance.

Patients who are potential NHBDs will almost always lack the capacity to make their own treatment decisions. They are likely to be unconscious having suffered a catastrophic brain injury. When a patient does not have the capacity, the Mental Capacity Act 2005 (MCA) says that any treatment decisions must be made in their best interests.

The guidance first of all emphasises that, in relation to end of life care, any decision about the futility of further treatment, and whether or not such treatment should be withdrawn, must be made purely in the interests of that patient and independently of any consideration of possible organ donation.

When making decisions what does a patient’s “best interests” cover? By a combination of the words of the MCA and decisions made by judges in cases that have gone to court, “best interests” are considerably wider than focusing just on treating a patient’s medical condition and include factors such as their social, emotional, cultural and religious interests. 

With the benefit of this legal foundation, the guidance says that, once it has been established that a patient actively wants to donate (either directly through eg. registration on the Organ Donor Register or indirectly as a result of discussions with family members) successful donation can be identified as being in the patient’s best interests as it will fulfil the patient’s wishes to perform an altruistic act of donation after death.

What does this mean in practice for NHBD? In the case of a patient who is a willing donor, where a decision has been made independently to withdraw life-sustaining therapies, and death will inevitably follow withdrawal, care and treatment linked to donation may be given provided it does not cause the patient harm or distress. 

This can include the taking and analysis of blood samples, maintenance of life-sustaining treatment (such as the adjustment of existing treatments) and the introduction of new therapies (such as inotropic support and the siting of venous cannulae) and also delaying the withdrawal of treatment.

Training on this guidance has already been given to almost 150 clinical leads at the newly-launched Professional Development Programme for Organ Donation. Training is also being provided as part of the introductory courses for newly recruited donor transplant co-ordinators.

The expectation is that trusts will now develop a clinical policy on NHBD working closely with NHS Blood & Transplant which is aiming to achieve an integrated national policy. Boards can play their part by asking for their own awareness session from their clinical leads and making sure a policy on NHBD is drawn up and implemented.

Action for boards

  • Update review of donation activity
  • Awareness session on DH guidance on NHBD
  • Support development of clinical policy and awareness session for all relevant staff