Organ Donation Teaching Resource Pack

Organ Donation
Teaching Resource Pack

Some Common Questions and Answers

(Provided by NHS UK Transplant)

What is organ donation?

Organ donation is the gift of an organ to help someone who needs a transplant. The generosity of donors and their families enables about 2,700 people in the UK every year to take on a new lease of life. Thousands of people have their sight restored by donated corneas.

When was the first transplant?

A cornea was first transplanted in 1905. Blood transfusion became established in 1918 and the first successful kidney transplant was in 1954. The first heart transplants took place in 1967.

What can be transplanted?

Kidneys, heart, liver, lungs, pancreas, small bowel, corneas, heart valves and bone can all be transplanted. Skin can be used to treat patients with severe burns. Techniques are improving all the time and it may soon be practical to transplant other parts of the body.

What organs or tissue can I donate?

The organs that can be donated include heart, lungs, kidneys, pancreas, liver and small bowel.

Tissue that can be donated includes corneas, skin, bone, heart valves and other tissue. Corneas can be transplanted to restore the sight of a person who has a severe eye disease or injury. Bone and tendons are used for reconstruction after an injury or during joint replacement surgery. A bone transplant can prevent limb amputation in patients suffering from bone cancer.

Heart valves are used to help children born with heart defects and adults with diseased or damaged valves. Skin grafts are used as protective dressings to help save the lives of people with severe burns.

Most people can donate tissue. Unlike organs, tissue can be donated up to 24 hours after a person has died and can be stored for longer periods.

Reproductive organs and tissue are not taken from dead donors.

Why are even more donors needed?

Every year hundreds of people die while waiting for a transplant and many others lose their lives before they even get on to the waiting list. There is a serious shortage of organs and the gap between the number of organs donated and the number of people waiting for a transplant is increasing.

Transplants are very successful and the number of people needing a transplant is expected to rise steeply due to an ageing population, an increase in kidney failure and scientific advances which mean that more people are now able to benefit from a transplant.

The number of available organs has fallen for several reasons. 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 they can only be donated by someone who has died in hospital. Usually organs come from people who are certified dead while on a ventilator in a hospital intensive care unit, generally as a result of a major accident like a car crash, a brain haemorrhage or stroke.

The numbers of people, particularly younger people, dying in these circumstances is falling mainly because of welcome improvements in road safety, medical advances in the treatment of patients and the prevention of strokes in younger people. While only a very few people die in circumstances which would enable their organs to be donated, virtually everyone can donate their corneas to help others to see or give bone, skin or other tissue after their death.

Another major reason is that many people have not thought about donation or discussed it with their families. Too few people have joined the NHS Organ Donor Register or made sure that their families know their wishes. Relatives who do not know a person's wishes may refuse permission for organs to be used.

How do they know you are really dead?

Organs are only removed for transplantation after a person has died. Death is certified by a doctor or doctors who are entirely independent of the transplant team. Death is certified in the same way for people who donate organs as for those who do not.

Most organ donors are patients who die as a result of a head injury, brain haemorrhage or stroke who are on a ventilator in a hospital intensive care unit. In these circumstances, death is confirmed by brain stem tests. The ventilator provides oxygen which keeps the heart beating and blood circulating after death. These donors are called heart beating donors. Organs such as hearts and lungs, which deteriorate very quickly without an oxygen supply, are usually only donated by a heart beating donor.

Patients who die in hospital but are not on a ventilator can, in some circumstances, donate their kidneys and, in a very small number of cases, their liver. They are called non-heartbeating donors. Both heart beating and non-heartbeating donors can donate their corneas and other tissue such as skin, bone and heart valves.

Can they keep you alive with machines?

No, the patient is dead. A ventilator keeps the body supplied with oxygen and this means the heart will continue to beat and circulate blood. This preserves the organs so they can be donated for transplant. When the ventilator is turned off the heart will stop beating within a few minutes.

Will they just let you die if they know you want to be a donor?

No, the doctors looking after a patient have to make every possible effort to save the patient's life. That is their first duty. If, despite their efforts, the patient dies, only then can organ donation be considered and a completely different team of doctors would be called in.

Can I donate if I die in the accident and emergency department?

Yes, in a small number of hospitals, patients who are certified dead on arrival or die in the accident and emergency department can donate organs, in particular kidneys which are able to tolerate longer periods without oxygen than other organs.

For this to happen however, steps have to be taken to preserve the kidneys until the next of kin are contacted and can let their wishes be known. This includes a special technique in which the kidneys are flushed with a cold preservative fluid. This is done through a small tube which is inserted into a blood vessel in the groin.

This must be done within minutes of death to ensure the kidneys remain suitable for transplantation and the deceased is not deprived of the opportunity to donate. If the wishes of the deceased are known (for example they are on the NHS Organ Donor Register), this procedure will be performed. However, organ donation itself will never take place without full discussion with the relatives.

Can you donate an organ while you are still alive?

Yes, in some cases. The shortage of organs has led to an increasing number of organ donations by living people.

The most common organ donated by a living person is a kidney, as a healthy person can lead a completely normal life with only one functioning kidney. Kidneys transplanted from living donors have a better chance of long-term survival than those transplanted from people who have died. There are a number of reasons for this, the main one being that the donor is alive and healthy. About 1 in 5 of all kidney transplants are from a living donor.

Most living donor kidney transplants are between close family members because they usually provide the best match. The donor might be a brother, sister, mother, father, aunt, uncle, grandparent or child. The majority are between parent and child but living donor kidney transplants between people who are not blood relatives - such as husband and wife or between partners or close friends - are becoming increasingly common. Before a living donor transplant can go ahead there are strict regulations to meet and a thorough process of assessment and discussion.

Part of a liver can be transplanted, and it is also possible to donate a segment of a lung and, in a very small number of cases, part of the small bowel.

Hearts are also donated by living people. This is because for some patients with diseased lungs who need a transplant, it is more effective to give them a combined heart and lung transplant, even though their heart is perfectly healthy. In these cases, the patient's healthy heart is then transplanted into a patient needing a heart transplant. This is known as a 'domino' transplant.

Why do we need to agree to become organ donors?

In the UK organs from a potential donor can only be used if the legal requirements of the Human Tissue Act 1961 and Human Organ Transplants Act 1989 have been met. Under these Acts it is essential to try and find out whether the dead person objected to donation and to seek the views of close relatives.

Putting your name on the NHS Organ Donor Register and carrying a card makes it easy for your relatives to know your wishes. We know that if a person has expressed a wish to be an organ donor then the relatives rarely object. That is why it is so important that you make sure your family is aware of your views on organ donation.

What is the NHS Organ Donor Register?

The NHS Organ Donor Register is, quite literally, a life-saver.

It is a confidential, computerised database which holds the wishes of more than 10 million people who have decided that, after their death, they want to leave a legacy of life for others. The register is used after a person has died to help establish whether they wanted to donate and, if so, which organs.

Do I need to register if I have a donor card?

Yes, cards can and do get lost or damaged and you may not be carrying one when you are taken to hospital. Adding your name to the register is a more permanent way of expressing your wishes. You can still carry a card if you wish to. Do not forget to tell your relatives what your wishes are.

Will my name and address be given to other organisations?

No, this information will only be used by NHS UK Transplant to register your wishes on the NHS Organ Donor Register. Your personal details would not be passed to any individual or organisation without seeking your explicit consent.

I am not sure if I have already registered, what should I do?

Either write in and ask (the confidential nature of the register means that NHS UK Transplant cannot tell you over the phone) or apply to join and their system will identify if you are already on the register and update any relevant details.

Who would get my organs if I became a donor?

Many things need to match, or be very close, to ensure a successful transplant. Blood group, age and weight are all taken into account. For kidneys the most important factor is tissue type which is much more complex than blood grouping. The more accurate the match, the better the chances of success.

There is a national, computerised list of patients waiting for an organ transplant. The computer will identify the best matched patient for an organ, or the transplant unit to which the organ is to be offered.

The waiting list and donor organ allocation system is operated by NHS UK Transplant. It works round the clock, every day of the year and covers the whole of the UK and Republic of Ireland.

Are donors screened to identify if they have a transmittable disease?

Yes, blood is taken from all potential donors and tested to rule out transmittable diseases and viruses such as HIV and hepatitis. The family of the potential donor is made aware that this procedure is required.

Can I be a donor if I have an existing medical condition?

Yes, having a medical condition does not necessarily prevent a person from becoming an organ or tissue donor. The decision about whether some or all organs or tissue are suitable for transplant is made by a doctor, taking account of the medical history. Usually, but not always, it is possible for some organs or tissue to be donated.

Can a donor be under 16?

Yes, if he or she has expressed such a wish, and the parents agree to donation.

Can older people be donors?

In the case of corneas and bone donations, age does not matter. For other organs, it is the person's physical condition, not age, which is the deciding factor. Doctors decide in each case whether it is possible to use them. Organs from people in their 70s and 80s are transplanted successfully.

Does the colour of my skin make a difference?

Yes and no. Organs are matched by blood group and tissue type. The better the match, the greater the chance of a successful outcome. Transplants are more likely to be successful where the donor and the patient are from the same ethnic group, because they are likely to be a better match.

A few people with rare tissue types will only be able to accept an organ from someone of the same ethnic origin, so it is important that we have donors from all ethnic groups.

Successful transplants are carried out between people from different ethnic groups, wherever the matching criteria are met.

Are there religious objections to transplants?

Most major religious groups approve and support organ transplantation, as it is consistent with life-preserving traditions. However, if you have any doubts, you should discuss them with your own spiritual or religious leader.

If someone needs an organ desperately is there any point in making a special appeal?

Yes and no. Any special appeal usually results in more people agreeing to become donors and can increase the number of organs available in the future.

However, family appeals through the newspapers and television will not result in an organ immediately becoming available for the person on whose behalf the appeal was made. The patient will still be on the waiting list, just like everyone else, and the rules that govern the matching and allocation of donor organs to recipients still apply.

Can I agree to donate some organs or tissue and not others?

Yes, you can specify which organs you would wish to donate. Simply tick the appropriate boxes on the NHS Organ Donor Register form or on the donor card, and let those close to you know what you have decided.

Can I agree to donate to some people and not to others?

No, organs and tissue cannot be accepted unless they are freely donated without any conditions attached in terms of potential recipients. The only restriction allowed is on the organs or tissue to be donated.

Could my donated organ go to a private patient?

Possibly, but this is unlikely. Patients entitled to treatment on the NHS are always given priority. These include UK citizens, members of Her Majesty's forces serving abroad and patients covered by a reciprocal health agreement with the UK.

Other patients would only be offered an organ if there were no suitable patients entitled to treatment under the NHS. Every effort is made to ensure that a donated organ does not go to waste if there is someone who can benefit.

Would any of my organs be given to someone in another country?

Yes, there is an agreement that any organs that cannot be matched to UK patients are offered to patients in other European countries. Likewise, UK patients benefit from organs offered by other European countries. This co-operation increases the chance of a suitable recipient being found, ensuring that precious organs do not go to waste.

Does donation leave the body disfigured?

No, organs are always removed with the greatest of care and respect for the person by properly trained surgeons. This takes place in a normal operating theatre under the usual conditions. Afterwards the wound is carefully stitched up and a dressing is placed over it. Only those organs and tissue specified by the donor or their family will be removed.

The donor's external appearance is also fully restored where tissue has been donated.

The funeral will not be delayed and relatives may see the body after the operation if they wish. The transplant co-ordinator will stay with the family during the whole process if the family wishes.

Does being a donor cause delays to funeral arrangements?

No, once relatives have agreed, everything has to be done very quickly to improve the chances of successful transplants, usually within 12 hours.

Does a donor's family have to pay the cost of donation?

No, there is no question of any payment at all. The NHS meets the costs related to the donation of organs.

Will the NHS pay the cost of the funeral?

No, funeral costs are met either by the family or from the person's estate and not by the NHS or any Government authority.

My relative wants to be a donor. What do I need to do when they die?

If they are certified dead in a hospital, simply tell any of the doctors or nurses involved in their care that they wanted to donate. The earlier you are able to tell staff, the more likely it is that organs can be transplanted successfully.

If your loved one dies elsewhere, for instance at home or in a hospice, they can still donate tissue. Let the doctor who certifies death know their wishes.

Will organs that are removed for transplant be used for research purposes?

Organs that cannot be used for transplant will only be used for medical or scientific research purposes if specific permission has been obtained from the donor's family.

How is organ donation different from organ retention?

The problems of organ retention arose because proper consent was not obtained from parents or relatives for organs and tissue removed at post-mortem to be retained for research or other purposes. Organs are only removed for transplantation with the consent of relatives.

Can I leave my body for medical education or research after I have donated my organs?

No, bodies cannot be accepted for teaching purposes if organs have been donated or if there has been a post-mortem examination. Corneas can however be donated.

Arrangements for whole body donation for research purposes or for anatomical examination can be made through HM Inspector of Anatomy.

Would a donor's family ever know who the recipient was?

Confidentiality is always maintained, except in the case of living donors, who are usually within the same family. If the family wishes, they will be given some brief details such as the age, sex and area of the country of the person or persons who have benefited from the donation. The patients who receive the organs can obtain similar details about the donors.

The families may want to exchange anonymous letters of thanks or good wishes through the transplant co-ordinators and in some instances donor families and recipients have arranged to meet.

Why should I discuss my wishes with my relatives?

So that there can be no doubts about what you would want to happen. Families are always consulted when there is a possibility of organ donation. Facing up to the death of a loved one is hard. Having to make a decision about organ donation when you are unsure what that person would have wanted can be difficult.

A key reason why relatives do not agree to donation is that they do not know what their loved one would have wished. However, objection is almost unknown if the family is aware that their relative wished to donate.

Why can my family overrule my wishes?

Few, if any, transplant surgeons would go against the wishes of a family. Whilst there are unlikely to be any repercussions against a surgeon who removed organs in the face of family objections from a person who wished to be a donor, there are few surgeons who would add to the stress of a grieving family by acting contrary to their wishes. Negative publicity from such an act would also have a detrimental effect on organ donation.

Even if you think your family will object, you should join the NHS Organ Donor Register and tell them of your decision to be a donor when you die. If there is written evidence of your wish to be a donor, most people will accept that, after death, your wishes should be respected.

What if I have no family or other relatives?

You can join the NHS Organ Donor Register and tell a friend or close colleague about your decision.

Should I put my wishes in my will?

By the time your will is read, it would be far too late for you to become a donor.

Can I change my mind?

Yes, you can simply go to the Sign Me Up section of the web site www.uktransplant.org.uk and fill in the form asking for your name to be removed. If you prefer, you can write to the NHS Organ Donor Register, UK Transplant, FREEPOST (SWB1474), Patchway, Bristol BS34 8ZZ. If you have an organ donor card, tear it up. Let your family know that you have changed your mind.

Can people buy or sell organs?

No, the Human Organ Transplants Act 1989 absolutely prohibits the sale of human organs.

I am interested in giving blood, what do I do?

Blood is needed constantly, for all kinds of things, such as cancer treatments, operations and in childbirth. There are thousands of places all over the country that hold blood donor sessions and new blood donors are always welcome. Almost anyone aged 17 to 60 years and in general good health can give blood.

I am interested in donating bone marrow, what do I do?

Without bone marrow, blood cannot be produced. When things go wrong and the bone marrow becomes damaged, for example as a result of treatment for leukaemia or a related cancer of the blood, the patient must receive a transplant to survive.

The British Bone Marrow Registry (BBMR) is run by the National Blood Service working in co-operation with the other UK bone marrow/blood donor registries.