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NICE publishes new guideline on organ donation

NICE has today (12 December) published a new guideline on improving donor identification and consent rates for deceased organ donationi.

The number of people registered on the NHS Organ Donor Register currently stands at around 18 million people ii, but the actual number of people donating remains very lowiii. This may be due to a person's wishes not being known and those close to them not consenting to organ donation after that 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 signed up to the NHS Organ Donor Registeriv. Consequently, there is a serious shortage of organs for transplant, with around 10,000 people on waiting lists for transplantation in the UK. Of these, 1,000 will die each year waiting for a transplant as there are not enough organs availablev. The median wait for a new adult kidney went up from 995 days during 2002-06, to 1191 days during 2005-09, an increase of almost 20%vi.

NICE recommends that organ donation should be considered as a usual part of end- of-life care planning, and that each hospital should have a policy and protocol, consistent with these recommendations, for identifying potential donors and managing the consent process. The guideline also recommends that in all cases those close to the patient should be approached in a professional, compassionate and caring manner and be given sufficient time to consider the information they have been offered.

The 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 (indicating a high likelihood of brainstem death) in patients who have had a catastrophic brain injuryvii
  • the intention to withdraw life-sustaining treatment in patients with a life-threatening or life limiting condition which will, or is expected to, result in circulatory deathviii.

The healthcare team caring for the patient should initiate discussions about potential organ donation with the specialist nurse for organ donation when the potential donor is identified.

If a patient has the capacity to make their own decisions, their views on, and possible consent to, organ donation should be obtained. If the patient does not have the capacity to consent to organ donation, the guideline recommends that healthcare professionals seek to establish whether taking steps before death to facilitate organ donation would be in the best interests of the patient. This includes consideration of the patient's known wishes and feelings, any advance statement, registration on the NHS Organ Donor Register and also any views expressed by the patient to those close to them.

The multidisciplinary team (MDT) responsible for planning the approach and discussing organ donation with those close to the patient should include:

  • the medical and nursing staff involved in the care of the patient, led throughout the process by an identifiable consultant
  • the specialist nurse for organ donation, and
  • local faith representative(s) where relevant.

The guideline also makes recommendations about what information those close to the patient should be provided with. This should include assurance that the primary focus is on the care and dignity of the patient, whether the donation occurs or not. There should be explicit confirmation and reassurance that the standard of care received will be the same whether consent for organ donation is given or not.

Dr Fergus Macbeth, Centre for Clinical Practice Director at NICE said: "Organ donation can be a sensitive subject, particularly if decisions are made at a time of bereavement. It is, therefore, crucial that there is a clear guideline in place to support and assist healthcare professionals at this time. I am sure it will be helpful to all those involved in this important process."

Gary McVeigh, Professor of Cardiovascular Medicine, Queens University Belfast and Consultant Physician, Belfast City Hospital and Chair of the Guideline Development Group said: "I am very pleased this new guideline is being published. Research suggests many people approve of organ donation but the reality is there is a great shortage of organs, and around 1000 people die every year in the UK whilst waiting for a transplant. I hope this guideline will encourage more people to sign up to the NHS Organ Donor Register and, importantly, tell those close to them of their wishes and intentions."

Karen Morgan, Regional Manager/Nurse, Organ Donation, and Guideline Development Group member said: "As a nurse, I understand what a very difficult and emotional time the end of a person's life can be, and often the last thing loved ones want to think about at this time is organ donation. But sadly, there is a big shortage of donors, so it is imperative that more people seriously consider donating their organs. Although it is an important decision to make, many people are comforted knowing that some good will come out of their death."

Jane Nix, Donor Family Network, and Patient/Lay member, Guideline Development Group said: "The Donor Family Network welcomes the publication of this guideline. More organ donors are so desperately needed by those on the waiting lists and I hope this guideline will help improve consent rates. For a lot of donor families, consenting to organ donation has become a positive decision at such a tragic time in their lives."

Ends

Notes to Editors

1. The new clinical guideline can be found from Monday 12 December on the NICE website at: www.nice.org.uk/guidance/CG135

Please contact the press office for an advanced, embargoed copy.

2. For further details on clinical guideline development please see the NICE website

References

i. 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.

ii. NHS Blood and Transplant.

iii. In 2010-2011, 2687 patients received organ transplants from 1010 deceased organ donors. (NHS Blood and Transplant)

iv. NHS Blood and Transplant Annual Report and Accounts 2009/10.

v. NHS Blood and Transplant.

vi. NHS Blood and Transplant.

vii. This recommendation is subject to whether there is a clear reason why the clinical triggers are not met (for example because of sedation) and/or a decision has been made to perform brainstem death tests.

viii. This refers to death diagnosed and confirmed by a doctor following cardiorespiratory arrest

About NICE

1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health.

2. NICE produces guidance in three areas of health:

  • public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
  • health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
  • clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.

3. NICE produces standards for patient care:

  • quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
  • Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients.

4. NICE provides advice and support on putting NICE guidance and standards into practice throughits implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.

This page was last updated: 12 December 2011

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Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.