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Human tissue and organs - shortages

May 2004
(This briefing paper applies to the UK)

Introduction
Each year many people die waiting for an organ transplant. At the same time, bodies are buried or cremated complete with organs that could have been used to save lives, not because the deceased objected to donation but simply because they never got around to carrying a donor card or informing their relatives of their wishes.

Extent of the problem

• At the end of December 2003, 7,278 people were on the active and temporarily suspended transplant waiting list in the UK. The waiting list continues to grow each year and increased by 34.5% over the last 10 years.
• Despite a small rise in the number of cadaveric organ donors during 2000, there were 7.3% fewer donors in 2003 than in 2002.
• 401 people died in 2002 while on the transplant waiting list. Others will have died without even reaching the waiting list.
• Studies show that around 90% of the population would be willing to donate organs after their death, yet only 11.3 million out of a UK population of 59.2 million are registered on the NHS Organ Donor Register (as at May 2004).
• UK Transplant says that 'the number of people needing a transplant is expected to rise steeply over the next decade due to an ageing population, an increase in kidney failure and scientific advances resulting in more people being suitable for a transplant'.
• Official statistics show that over the five year period 1995-1999, about a thousand patients died whilst on the waiting list for a heart, heart and lung, lung or liver transplant. In fact the actual number of people dying whilst awaiting an organ transplant is likely to be considerably higher. Many will have died without even reaching the waiting list and this number does not include patients who die because there are insufficient dialysis facilities to meet the demand. Many more patients' lives are dominated by the burden of dialysis.

• to provide a clear and unambiguous framework within which organ donation may take place;
• requiring that the most up to date guidelines are followed in determining death by brain stem tests before organs are removed;
• to remove the distinction between related and unrelated live altruistic donors. All live donations should be subject to the same rigorous assessment to ensure that the potential donor is acting voluntarily and free from pressure;
• unless the individual or the close family objected to organ donation, to give legal authorisation to the use of invasive procedures, after death, to protect organs in the period leading up to the transplant in order to facilitate greater use of non-heartbeating donors; and
• to introduce a system of presumed consent, with safeguards, for adults whereby it is assumed that individuals wish to donate organs after their death unless they registered an objection to donation during their lifetime. Doctors should, however, have the discretion not to proceed if the potential donor's wishes are not known and it is clear that the donation would cause major distress to a first degree relative or long-term partner.

• a 24-hour 7-day-a-week telephone help line to answer any questions related to organ donation from journalists, health professionals or the general public;
• a National Transplant Service (NTS) to take over and expand on the work of UK Transplant;
• consideration of whether the list of criteria for exclusion of donors should be made less restrictive;
• an expanded network of donor co-ordinators employed and trained by the NTS;
• changes to training and staffing arrangements to overcome the shortage of transplant surgeons;
• consultant-led multi-organ retrieval teams working in zones and improved support and reimbursement for donor hospitals, as recommended by the Royal College of Surgeons;
• the establishment of additional critical care beds;
• the establishment of specialist training courses; and
• the development of a 'UK model' for organ donation building on existing good practice in the UK and borrowing, where appropriate, from practices overseas modified as necessary to suit the UK.

• the donor register is always consulted by the transplant co-ordinator when potential donors are identified to ascertain the potential donor's expressed wishes before the family is approached;
• wherever possible, the death certificate is issued to the family before organs are removed;
• the term 'brain stem death' is replaced with 'death confirmed by brain stem tests'; and
• protocols are established and used in each unit to set out the criteria for donation so that considering organ donation becomes the norm and all suitable deaths are referred to the transplant co-ordinator.