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NICE Consults On Improving Donor Identification And Consent Rates For Deceased Organ Donation

June 08, 2017

NICE has published draft guidelines on improving donor identification and consent rates for deceased organ donation[1]. Transplanted organs are needed because of organ failure due to diseases such as chronic inflammatory disease of the kidney, or because of secondary effects of a disease such as people needing a lung transplant due to cystic fibrosis.

There are at present almost 18 million people on the NHS Organ Donor Register (ODR)[2], but the actual donor rate remains very low; this may be due to bereaved relatives not consenting to organ donation after a person has died. Also, only a very small number of people die in circumstances where they are able to donate their organs because organs have to be transplanted very soon after someone has died.

Although 90% of the UK general public approve of organ donation, only 28% have registered on the ODR[3]. This has resulted in a serious shortage of organs for transplant, with more than 10,000 people on waiting lists for transplantation in the UK.[4]

NICE recommends that organ donation should be discussed with patients (where appropriate) and their families. The draft guideline recommends that parents, families, or guardians should only be approached for consent when it is clearly established that they understand the inevitability of the death. Each hospital should have a policy and protocol for identifying potential organ donors and managing the consent process. The pathway for organ donation (from identification to consent) should be coordinated by a multidisciplinary team (MDT), led by an identifiable consultant[5] working in close collaboration with the specialist nurse for organ donation and faith representatives, where relevant.

The draft guideline recommends that all patients who are potential suitable donors should be identified as early as possible, based on either of the following criteria:

- Defined clinical trigger factors in patients who have had a catastrophic brain injury and who have had death confirmed against neurological criteria.
- The intention to withdraw treatment in patients with a life-threatening or life limiting condition after cardiac death.

If a patient has the capacity to make their own decisions, their views on organ donation should be obtained. If the patient is close to death and does not have the capability to make their own decisions, the draft guideline recommends that the healthcare clinical team caring for the patient should refer to and act in accordance with any earlier directives made by the individual, if available. The team should also establish if the individual has registered and recorded their decisions on the NHS ODR, and explore with those close to the individual if the patient had expressed any views on organ donation.

The draft guideline also makes recommendations about what information parents, families, or guardians of potential donors should be provided with. For all potential donors this should include assurance that the primary focus is on the care and dignity of the patient (whether the donation occurs or not) and that the parents', family's, or guardians' wishes will be respected. There should be explicit confirmation and reassurance that the standard of care received will be the same whether consent for OD is given or not. The rationale behind the decision to withdraw or withhold life-sustaining treatment and how the timing will be coordinated to support organ donation should also be explained.

Dr Judith Richardson, Associate Director, Centre for Clinical Practice at NICE said: "Organ donation is an emotive and often difficult subject, particularly if decisions have to be made at a time of bereavement. Yet, despite many people being in support of donation there are still around 1000 people dying every year in the UK whilst waiting for a transplant. It is, therefore, crucial that there are clear guidelines in place to help healthcare professionals involved in this process. I would urge all those stakeholders with an interest in this area to submit their comments on these draft guidelines via the NICE website."

NICE has not yet issued final guidance to the NHS; these recommendations may change after consultation.

Final guidance is likely to be published in August 2011.


1. The draft clinical guideline can be found from Wednesday 16 February on the NICE website.

Closing date for comments is Wednesday 16 March 2011.

2. After consultation, an independent guideline review panel reviews the guideline to check that stakeholder comments have been taken into account.

3. After the guideline development group finalises the recommendations, the collaborating centre produces the final guideline. NICE then formally approves the final guideline and issues its guidance to the NHS.

4. For further details, see the developing NICE clinical guidelines webpage.

[1] This refers to donors who have been declared brain-stem or cardiac dead, and whose organs are kept viable by ventilators or other mechanical mechanisms until they can be excised for transplantation.

[2] NHS Blood and Transplant.

[3] NHS Blood and Transplant Annual Report and Accounts 2009/10.

[4] NHS Blood and Transplant.

[5] Consultant staff who have clinical responsibility for patients who are potential organ donors have a duty according to General Medical Council (GMC) guidance to consider organ donation as part of end of life care.