Teaching Resource Pack
Waiting Time to Transplant
We are dealing with a national shortage of organs. Patients must wait for an organ. Some will die waiting.
Average Waiting Times to Transplant - in Days
Remember, these are average times. It could be shorter or longer. The waiting time can be very stressful, as families and friends watch their loved ones deteriorate and suffer.
Does transplantation work?
Transplantation has been described as 'one of the great success stories of the latter half of the 20th century'.
Transplants are now so successful that a year after surgery:
- 95% of kidneys in living donor transplants are functioning well;
- 86% of kidneys from people who have died are still functioning well;
- 80% of the organs in liver and heart transplants are still functioning well.
When can organs be retrieved?
Although half a million people die every year, the majority of these are conventional deaths: there is no heartbeat, breathing stops and soon all other organs die, including the brain.
Confirmation of death by brain stem tests is a well established criterion throughout the world. Organs can be retrieved following confirmation of death by brain stem tests.
What is the brain stem?
The brain stem is located at the base of the brain and controls your breathing, blood pressure and other vital functions. Severe damage to the brain can cause the brain stem to die. This may be caused by an accident resulting in serious head injuries or by a brain haemorrhage or stroke. Brain stem death is diagnosed after satisfying strict medical pre-conditions. Two senior and experienced doctors, not involved in transplantation, perform five simple tests. The tests are performed twice.
(see diagrams below)
Once death has been confirmed by brain stem tests and organ donation has been agreed, a communication network is triggered, sometimes leading to consent for donation, but not always.
Brain Stem Tests
Process To Transplantation
So How are the Organs Allocated?
'I've heard people jump the queue if they are private patients.'
'I've also heard people jump the queue if they know or are related to the consultants.'
There are many stories, rumours and confused ideas about the allocation of organs. This is what actually happens.
The number of people needing organ transplants in the UK is greater than the number available. So there has to be a system to ensure that all patients are treated equally and that donated organs are allocated in a fair and unbiased way.
All patients who are waiting for a transplant are registered on the NHS UK Transplant National Transplant Database. A computer programme is used to identify across the UK the best match and the transplant unit to which the organ is to be offered.
The system of allocation differs according to the type of organ, whether it's a heart, lung, kidney, liver or cornea, but there are some guiding principles.
Patients waiting for a heart or liver who are classified as super urgent are given priority. This is because their life expectancy without a transplant can be measured in days or even hours. If there are no super urgent patients on the waiting list, the organ is offered to patients on the transplant list who are nearest in age and blood group to the donor. The location of donor and recipient is also considered to minimise the delay between retrieving and transplanting organs.
Children are given priority for kidneys because they tend not to thrive on dialysis and may suffer growth impairment. Organs donated from children generally go to child patients to ensure the best match in size but, when there are no suitable child recipients, organs from young people are given to adults.
When an organ becomes available anywhere in the country, the duty office at NHS UK Transplant is notified immediately. Staff search the national database to find out whether there are any super urgent cases, with blood group or age compatibility, in any of the transplant centres.
Sometimes there are no suitable patients anywhere in the UK but a reciprocal arrangement with the European Union enables donor organs to be offered to other EU countries.
Role of NHS UK Transplant
The ethical dilemmas demonstrate clearly how organ donation and transplantation present challenging moral dilemmas. The allocation of organs is the responsibility of NHS UK Transplant, which was originally established in 1991 and is directly accountable to all UK Health Ministers.
The key role of NHS UKT is to ensure that donated organs are matched and allocated in a fair and unbiased way. Matching, particularly in the case of kidneys, is so important that donation and allocation need to be organised nationally. The larger the pool of organs, the better the likelihood of a good match.
NHS UKT is in a unique position in that it does not have a direct relationship with patients and does not provide 'hands on' care.
- Why is this an advantage when allocating organs to recipients?
What Does NHS UK Transplant Do?
NHS UK Transplant's specific responsibilities include:
- managing the NHS Transplant Database which includes details of all potential donors and patients who are waiting for, or who have received, a transplant;
- providing a 24-hour service for the matching and allocation of donor organs and making the transport arrangements to get the organs to patients;
- maintaining the NHS Organ Donor Register;
- improving organ donation rates by funding initiatives in the wider NHS;
- contributing to the development of performance indicators, standards and protocols which guide the work of organ donation and transplantation;
- acting as a central point for information on transplant matters;
- providing central support to all transplant units in the UK and Republic of Ireland;
- auditing and analysing the results of all organ transplants in the UK and Republic of Ireland to improve patient care;
- raising public awareness of the importance of organ donation.
NHS Organ Donor Register
Besides telling family, relatives and friends of the decision to donate organs, there is also the National Organ Donor Register, held by NHS UK Transplant in Bristol. If someone wishes to donate organs after their death they can add their name to the Register. This enables doctors, nurses and transplant co-ordinators to confirm an individual's wishes to the family, close relatives and close friends.
It is interesting to note here that around 50-60% of families agree to organ donation when asked. It is very rare for families to refuse consent if they knew that their loved one wanted to donate.
Here in Scotland when organs become available, if there is no suitable match on the NHS UKT super urgent list, then the following process is followed:
- the heart is offered to the Scottish cardiac transplant co-ordinator based in Glasgow;
- the lungs are offered to the Newcastle transplant co-ordinator where Scottish patients are transplanted;
- the liver is offered to the Scottish Liver Transplant Unit based in Edinburgh;
- the kidneys are allocated by the best tissue match in the country. If there is an equal match, factors such as age etc are taken into account.
A Day in the Life of a Transplant Co-ordinator
The role of the transplant co-ordinator is important in the process of donation and transplantation. Here is a fairly typical account from Jen Lumsdaine a transplant co-ordinator working in Edinburgh.
"Transplant co-ordinators organise the transplant process. There are two different types - donor transplant co-ordinators are responsible for the care of a patient who has died, speaking to the family and organising the organ donation process. Recipient transplant co-ordinators are involved in assessing patients for the transplant waiting list, organising the transplant operation and follow-up. Most transplant co-ordinators are registered nurses.
In Scotland, there are recipient transplant co-ordinators for liver and heart transplants. In some units, the donor transplant co-ordinator has a dual role - also working as a kidney recipient transplant co-ordinator. I work in a team of four, and this is a description of some of our work.
08.30 hrs: Kidney Transplant Unit ward round. This involves the multi-disciplinary team that includes surgeons, physicians, nurses, dieticians, pharmacists and transplant co-ordinators. Each patient on the ward is reviewed and their progress, including blood results and anti-rejection medication are discussed with the patient. Today we have admitted a mother and son, in preparation for a live kidney donor transplant tomorrow. The mother has undergone six months of testing to prove she is very healthy, with two well-functioning kidneys. Final tests today will give the go ahead for tomorrow. The other patient being reviewed is a 35-year-old man who had been waiting for a transplant for six years, and finally received a call two weeks ago. The transplant was successful and he is waiting to go home. During the ward round he asks if he can write a letter to the family of the donor to thank them for this gift.
09.30 hrs: Following the ward round, I attend to some of the paperwork involved from the transplant yesterday. It is important that all the legal documents are completed and sent to NHS UK Transplant.
11.00 hrs: Education is a significant part of the transplant co-ordinator's role. Today I am speaking to a group of medical students about brain stem death and organ donation. All health professionals are involved in transplantation, and for new doctors and nurses it is important they are taught how to approach bereaved families and discuss organ and tissue donation.
12.00 hrs: The hospital media department has contacted the transplant co-ordinators asking for information and volunteer patients to talk to the press about transplantation. Most of the transplant recipients are willing to do this - without organ donors they would not have received a transplant, and it is important to highlight this to the public. We set up an interview with one lady who is entering the Transplant Games this year - an Olympic-type event for organ recipients.
13.30 hrs: Transplant Assessment Clinic: Patients who are reaching end-stage organ failure attend this clinic to review their suitability for a transplant. This involves an in-depth discussion and examination by the transplant surgeon, and information from the transplant co-ordinator concerning life on the transplant list, the operation and the care following a transplant.
15.00 hrs: Whilst in clinic I am called by an anaesthetist from one of our local intensive care units. They have just performed the first set of brain stem death tests on a 28-year-old man who had been in an accident. As the first set of tests had shown the man to be brain stem dead, they asked if I would attend the unit to discuss organ donation with the family following the second set of tests. Already the family had mentioned that the man had carried an organ donor card and had discussed his wishes with them.
I leave the hospital immediately, to drive 50 miles to the hospital. On arrival, the anaesthetist tells me the second set of tests have been completed, confirming brain stem death. The family are willing to speak to me.
16.30 hrs: Along with the nurse who has been caring for the patient, I discuss with his family the offer to donate his organs. This is perhaps the most important part of my role and I assure the family that the operation is performed with dignity and respect by the transplant team who will attend the hospital. We have a detailed discussion concerning which organs will be donated, his past medical history and the follow-up we provide.
17.30 hrs: The next two hours are spent gathering information about the potential organ donor, taking blood for tissue-typing and virus checking, and supporting the family. When all the information is complete, I contact NHS UK Transplant, a special health authority based in Bristol. The duty office will take details and inform which transplant centres in the UK to contact for organ allocation. NHS UK Transplant holds the names of everyone in the UK who is waiting for a transplant. The system in place can immediately work out which centre or patient should be offered an organ. As there are no super-urgent patients (those patients who are so ill they need a transplant within 72 hours), I can call the liver team in Edinburgh and the heart team in Glasgow to offer a life-saving transplant to someone in Scotland.
19.30 hrs: Having spoken to the recipient transplant co-ordinators for the liver and heart teams, they are organising for their transplant teams to come to the hospital to remove the liver, kidneys and pancreas, heart and lungs. The family also kindly agreed to corneal (eyes) and tendon donation, so I contact the tissue co-ordinator who will arrange for an ophthalmologist (eye surgeon) and orthopaedic surgeon to come to the operating theatre.
21.00 hrs: The family are saying goodbye to the patient, and we have arranged to meet the next morning when the operation will be completed and they can visit him in the Chapel of Rest in the mortuary. This is a very difficult time, and as a transplant co-ordinator I am always aware that it is due to the kindness of families at a time of acute grief that transplantation can proceed.
21.30 hrs: The donor is still on a ventilator, which provides oxygen to the organs. The anaesthetist and operating theatre assistant arrive in the intensive care unit to transfer him to theatre. The operation can take from 6-8 hours, and is performed under sterile conditions like any other operation. The organs are perfused with a special preservation fluid, as they will not have a blood supply until transplanted. The heart and lungs are quickly transferred, as the recipients are already in another hospital waiting and they must be transplanted within 4 hours. The liver and pancreas are transplanted within 12 hours. The kidneys are allocated by the best tissue match, and are usually transplanted within 24 hours.
03.30 hrs: The surgeons have finished the operation, and along with the theatre staff we perform 'last offices'. This involves washing and dressing the donor, in preparation for transfer to the mortuary.
04.30 hrs: One of the kidneys has been allocated to a local patient, and I telephone the surgeon, kidney doctor and transplant unit. At 05:00 hrs I phone the recipient, who has been waiting for 3 years for a transplant and ask him to come into hospital. It has been an emotional day.
10.00 hrs: I meet with the family of the gentleman who died, and take them to the mortuary to view the body. We talk briefly about which organs have been donated, but this is a time for their grief. I will write or visit soon, giving them information about all the people who received a transplant today."
There are many different people involved in the transplant process, and all work with the awareness that a grieving family has given their permission at a very difficult time. In one day, some of the people involved included:
NHS UK Transplant
Intensive Care Nurses
- What do you notice about Jen's typical day?
- What does Jen regard as the most important part of her role? What are her reasons?
- Jen knows there is a potential organ donor. Describe the process she follows from consent to transplantation.
- What do you think would have been the most emotional or moving times in her day?