Why do people not donate their solid organs after they have died?

This question is very difficult to answer as extensive research on this subject has not been carried out that has been put into the public domain.

Even if the research existed how valid would it be? If you ask people directly whether they would save someone’s life they would generally say ‘yes’. Then on reflection they would want to know the circumstances under which they could save someone’s life. I tend to take a positive view of human nature. I believe that most people are caring and generous but only to a degree that does not harm their own existence unless they are extremely altruistic. This is perhaps a naïve and optimistic view. Consequently I think most people would take reasonable measures to save another person’s life – especially a loved one or a close friend.

Organ donation following death clearly saves lives because this process facilitates over 3,500 lifesaving transplant procedures each year in the UK alone. Most people understand this, so most people say they would donate their organs. But the reality is different. Do people say ‘yes’ to donation to simply save face? Is it that they do not want to appear uncaring and selfish? Their actions seldom follow their expressed intentions.

The reality is that we are asking people to consider their mortality. In UK culture this is not an easy subject to discuss. The subject of death is not foremost in the minds of most people until the prospect of dying becomes more imminent. Generally speaking people in the UK are not very keen to consider issues relating to dying until the subject directly impacts on them or a very close relative or friend. Avoiding uncomfortable topics is a very strong coping mechanism employed by many people in certain circumstances. This is reflected in the fact that only 30% of people have signed the UK Organ Donation Register (2011), very few families discuss funeral arrangements well in advance of a family bereavement. It has been estimated that in 2010 60% of people died without making a will. We are not keen on discussing death – yet this biological certainty is something we all share!

The focus in this section of the website is to discuss why people do not ultimately donate their organs after they have died. There is some empirical research into this subject – but no large scale analysis. We are frequently reminded by opinion poll findings and NHSBT that 96% of the population would accept a solid organ transplant to postpone their death and that 90% UK citizens support organ donation. Yet only 30% of people have joined the Organ Donor Register (ODR) and four out of ten families refuse the request for organ donation when a family member has died in circumstances where donation could take place.

Maybe this issue should be discussed in two parts:

A. Why don’t people register to become solid organ donors?

B. What prevents registered organ donors giving their organs after their death?

There will inevitably be some degree of overlap and similarities in the discussion of these two questions. Given the lack of detailed published research in this field most of the comments made are based on my personal discussions with 6th form college students, undergraduate nurses and doctors and NHS health care professionals. In the last 4 years I have contributed to hundreds of presentations to help people make more informed decisions about donation – well over 12,000 people have attended the talks. The insights shared here have been gained from the views expressed by the participants. Clearly this is not a piece of social science academic research, but real anecdotal views that give a fair indication of why people do not support donation in the UK. Often the most outspoken views are expressed by the people who have no intentions of becoming donors and use an array of rationalisations to justify their position. If only more people would speak up in support of donation from all walks of life.

Why don’t people register to become solid organ donors?

There are many factors that contribute to a low take up of the opportunity to sign the Organ Donor Register (ODR). Incidentally, given the limited amount of resources available to promote and educate people about the ODR I think it is remarkable that the UK has 18 million people (2011) registered with this voluntary, opt-in scheme.

We all bring our own views and values to moral challenges. These are inevitably shaped by our upbringing, socialisation, family and peer group influences, where we live, how we are educated, spiritual or religious beliefs, how we perceive our value in society as a whole, the nature of our relationship(s) with health care professionals, ethnicity, social status and so on.

These factors intermingle and are multi-layered. We all bring our unique baggage of ideas to the way we respond to social dilemmas. In a pluralist liberal democracy the individual’s right to decide is considered paramount in most situations. Individual choice is compromised as little as possible by the state – though many people would strenuously disagree with this view in terms of legal constraints to civil liberties, limitations on free movement and speech, the tax burden imposed by governments on its citizens and so forth. In most social settings we live according to the principle that ‘the right to swing your arm stops at the end of my nose’. We tend not to impose our values and beliefs on others. Free will and individual choice are respected within limits set by the law. In the context of solid organ donation following death the individual citizen has the right not to be a donor.

Given that most people value the right to life and the fact that solid organ transplants save many lives, why do people not agree to donation after death? It is a well-known fact that the demand for solid organs for transplants outstrips the supply. Consequently at least three people each and every day die in the UK because their transplant did not take place. For example, half the patients on a lung transplant waiting list suffering from cystic fibrosis will die waiting. Yet when you ask most people would they save someone’s life they say “yes”. It is not until you start discussing the circumstances under which a life could be saved that they begin to seriously appraise whether they would be a genuine life saver. Putting a £1 coin in a collection box to save children starving to death is one matter – jumping into a reservoir to rescue a drowning child is a different issue altogether. Entering a neighbour’s burning house to save a person could depend on how ferocious the fire is or how well you liked your neighbour!

Natural instincts can easily be over-ridden by critical self-appraisal and an evaluation of the risks involved. The association between solid organ donation and death tends to make us very wary and cautious. What appears to be a morally good thing to do (i.e. to be a solid organ donor) is over powered by our fear of matters related to death.

So what reasons do people give for not signing the Organ Donor Register?

• Avoidance:

Although there is considerable media interest in transplant and donation stories we all have the capacity to read these stories but not internalise the significance of them. They are human interest stories that happen to someone else. With about 7,500 people on the active transplant waiting list and a further 2,500 currently suspended from the list (2010) most people would accept that this is a sizable challenge facing British society. With fewer 1,000 deceased donors each year the UK can carry out about 3,500 solid organ transplant procedures a year and that requires the support of just over 1,000 living organ donors who can provide a kidney, part of a liver or a lung lobe. In terms of donation following death we need to realise that we are all TEN times more likely to need a transplant than to be a deceased donor. Information like this needs to be put into the public domain. It may not make any difference at all - but it might just ‘nudge’ people to consider organ donation in a more determined light. Ten thousand people are waiting for the ‘gift of life’ gained through a transplant, but this does not include the thousands of people who die before they are even assessed for a transplant or who cannot convince doctors that their solid organ failure even merits a place on the transplant waiting list.

It has been estimated that maybe one in nine UK families have a direct experience of organ transplantation as recipients. Therefore most families have no direct experience at all to do with the benefits of transplants. Hence the view taken by some people that it is ‘not my problem’. . The discussions surrounding donation do not take place if families cannot empathise with the needs of people desperate for a transplant. They reason that it will not happen to them – the concept of social solidarity is not strong enough to outweigh the ‘what’s it for me?’ mentality that some people bring to this issue. They simply do not want to get involved and that is their right as free individuals in a liberal democracy.

There is also the element of tempting fate. If you start thinking about dying it will hasten your death – that is what cynics fear. This line of reasoning is difficult to refute because it suggests that signing the ODR inevitably means you will be flattened by the next bus that passes you on the street! That was my mother’s view of organ donation. If you steer clear of the register you will lead a long and untroubled life. How can you reason against this? I suppose we could conduct detailed empirical analysis to check how many died immediately after signing the Organ Donor Register – but if your reasoning allows you to manage your life through such mysterious channels as fate no amount of objective, factual analysis will influence your behaviour.

• Ignorance:

Despite media and marketing campaigns people claim they know nothing or very little about organ donation and how to be become a registered donor. This is understandable as we live in an era of information overload. We are bombarded with adverts, leaflets, spam, junk mail, free newspapers all which make demands on our decision making faculties. Unless you have a personal inclination to be a donor or the significance of its importance as a social action has had a direct bearing on your life, why should the issue feature on your daily agenda? Very few of us wake up each day with a list of ‘must do’ tasks already formulated in our minds. Issues such as organ donation have to be onto the daily agenda of busy lives in order to gain a response – either positive or negative.

If you are inclined to be a donor, if you have the available literacy or computing skills, you can find out how to register to be a donor. People will exercise their own skills to secure a goal or outcome which they value. This is where we need to re-focus our promotional and educational efforts. Rather than relying on the human qualities of benevolence and altruism to encourage people to volunteer as donors we should work harder to explain the importance of what transplants can achieve. If only one in nine families have direct experience of transplantation we need to invest more resources in face-to-face education to covey the significance of the donor/transplant process. Mass media recruitment campaigns tend to play on notions of altruism. Why not get across the fact that self-interest is highly relevant when it comes to donation? If we all turn our backs on donation more people will die. This could include you or someone you love.

State education in the 16 – 21 age range could be utilised to raise awareness on this subject. This education would not be deliberately intended to persuade people to become donors, but to give people the facts in an informed and objective manner and let people make their decisions accordingly – by design, rather than by default. It takes just minutes to show people how to register on line via the Internet The National Blood Service and The Organ Donor Register or on the telephone - 0300 123 23 23.

It takes a lot longer to explain why it is in everyone’s interest for people to support donation to benefit society as a whole.

There is always the danger that people will be alienated by the message – but such people would probably not become donors anyway. Those that are undecided may react positively – some will not. I believe we have a moral duty to encourage people to be donors for the sake of the growing number of patients on waiting lists and the distress experienced by their families watching them die.

I think there is also the need to do more work on educational projects that promote public health education to reduce the need for transplants in the first place. The best solution to donor shortages is to reduce the number of people with end stage organ failure. Greater understanding of the dangers related to obesity, lack of exercise, dependence on junk food, substance and alcohol abuse, high blood pressure, diabetes and stress would help people to manage their life styles in such a manner to reduce the need for transplants. But this is no cure for inherited or congenital conditions, disorders caused by accidents or those associated with social deprivation. There are many conditions that are assigned to you at birth which will increase the likelihood of the need for a transplant in later life such as certain myopathies, cystic fibrosis, kidney disease and so on.

• Apathy:

THE ‘what’s in it for me?’ is mentality that is sometimes applied to young people. Unless there is a direct benefit to an individual from carrying out a particular task people will not get involved. This is a cynical view of human nature, but one that has some validity in the material society in which we live. Individualism, acquisitiveness and competition are values that tend to dominate over other more old fashioned concepts such as solidarity, collectivism and altruism. If this is a valid assessment of life today it could explain why so many people do not want to become donors. We lead atomised lives in which a sense of community has been diminished. Indifference towards our fellow citizens undermines the potency of a community spirit on which altruism depends. Expressed in blunt terms many of us are indifferent or apathetic to the needs of our fellow citizens. The NHS was established on the principle of ‘each according to their need’ and people were expected to support the health service by applying the ‘gift ideal’. This approach was outlined by Richard Titmuss in his book ‘The Gift Relationship’ written in 1970. He argues that a blood donation, for example, benefits society as a whole. It should be given freely and voluntarily for the benefit of the ‘greater good’ asking individuals to be altruistic with a social good that can be lifesaving for anyone, including the individual donor. Notions of mutuality, solidarity and reciprocity, in the eyes of Titmuss, should be the driving forces that underpin donation of bodily materials not reward of an intrinsic or extrinsic nature. These views are enshrined in the 2004 Human Tissue Act.

The values that shaped the ideas of Titmuss may need to be re-considered in the twenty-first century. Donation levels are low in the UK using a voluntary opt-in system. Some form of reward or token of appreciation may be a more motivational stimulus to donation than the old fashioned values based on collectivism and reciprocity that carry less influence in today's society.

• Squeamishness:

When I give presentations on donation we discuss blood, bone marrow, tissue and organ donation. Just mentioning these terms makes some adults turn green. It has been known for some people to faint – never a woman though! The thought of giving blood or bone marrow comes across as a legitimised form of torture. The thought of needles and pain alienates potential donors. They know the ‘ends’ justify the ‘means’, but they cannot get beyond the thought of clinical procedures that may cause them an element of discomfort even if the outcome is the saving of another person’s life. The idea of volunteering to have needles used to withdraw a pint of blood or some peripheral blood stem cells causes some people to pass out. Ironically these are often the same people who use needles to pierce their bodies to affix jewellery or to have tattoos! You can imagine their reaction when the organ retrieval process is discussed. No re-assurances about compassion and dignity can convince the squeamish that organ retrieval following death will not cause them pain. I can honestly empathise with people that worry about medical procedures – I have had enough of them on my journey to a heart and kidney transplant. But donating blood, bone marrow, tissue or solid organs can save lives. Isn’t that enough to minimise squeamishness? What value do we place on a person’s life that we can’t transcend a bit of fear and become a donor?

• Ethnicity, spiritual or religious factors:

Squeamishness is a barrier to donation – however rational or irrational this may appear. The idea of a body being opened up after death to remove potentially lifesaving organs for transplantation is not an appealing prospect for many people. The idea is abhorrent to some and repellent to others. The process goes against their rules of nature and concepts of sanctity for the dying.

For some there is a religious or spiritual dimension too. If your body entered the world totally intact, then it should leave the world in the same way – to do otherwise would be to go against God’s will and religious scriptures. For a non-religious person this is difficult for me to understand, but I do respect this view because I believe in the individual’s right to express their own beliefs and views in a liberal democracy. A plurality of views on sensitive and controversial issues is to be expected and welcomed. Quite rightly this includes the donation of bodily materials and transplantation.

In terms of UK national religious organisations there is no religious group that is opposed to donation in its entirety. The exception is the donation of blood by Jehovah’s Witnesses. They are not permitted to accept a blood transfusion from another person. They can use their own blood in elective surgery which means that they can participate in receiving organ transplants. If I am a Christian Scientist the forces of my mind are supposed to be the only healing capability that I would need to cure a failing heart. (That proves that I have a feeble mind – my brain I was unable to prevent my heart ‘dying’!)

Local or community interpretations of national religious guidelines do vary considerably though. Peer group influences and localised customs shape local attitudes to donation. At a national level Christian, Muslim and Jewish leaders permit individuals at the community level to make their own decisions about donation and transplants. As a result vicars, priests, rabbis, imams or mufti can influence the behaviour of their communities about a range of social and ethical issues. Personal interpretation of local religious teachings can make even the discussion of donation topics a taboo subject, let alone participating in the process. It is very difficult to refute the strongly held belief that there are more important issues than life itself – namely the journey through to the afterlife. If a person believes that their journey into the afterlife can only be made with their body intact, no amount of discussion will influence such a view. If a person has such a strong commitment to a belief that organ donation is wrong, no appeals to the scriptures, rabbinic laws or fatwas that support donation will change their mind.

This may seem a flippant point. If bodily wholeness is so important to gain passage into the afterlife what fate awaits people who have lost limbs through accidents or who have had their appendix or tonsils removed? Are they denied access to heaven? Surely someone who has had the compassion and humanity to be an organ donor after they have died deserves a place in heaven? Does their altruistic act condemn them to purgatory or hell?

In all religious scriptures and the thoughts of various prophets competing ideas can be selected to justify organ donation as a virtuous lifesaving deed or as an unforgivable desecration of the human body. Both sides of the argument can take evidence from the scriptures to support their stance on organ donation. Some Ultra-Orthodox Jews carry cards stating that they do not want their organs removed when they die – they believe that organ retrieval is a mutilation of the human body and that it would interfere with burial proceedings. (Incidentally, organ donation is not mutilation and it does not delay burial arrangements.) In such communities organ donation is regarded as sacrilegious. But can it ever be right to abstain from organ donation on religious grounds? Allowing people to die for the sake of a transplant and to justify it on moral or religious grounds is beyond my comprehension. I fully appreciate that not everyone will agree with my views on this point. I am not intending to be offensive or provocative, but I do place the needs of the living over those of the dead in the context of organ donation.

Every action has a consequence and in this case every incident of inaction leads to people dying. I am also dismayed by the inaction of health care professionals who belong to these faith groups not doing more to challenge negative attitudes about donation. Doctors in particular witness first hand the suffering experienced by patients with end stage organ failure. Yet they restrict their role to clinical involvement rather than wider community education about this dreadful health inequality that hits ethnic groups the hardest. Very few medics will actively raise awareness about the importance of organ donation yet they are in a pivotal position to make a real difference within their own communities.

This health inequality is illustrated by the following facts:

• 26% of the people on transplant waiting list are from non-white communities.

• Fewer than 3% of people on the Organ Donor Register are non-white.

• Yet about 12% of the total UK population are made up of black and minority ethnic groups.

• Consequently a non-white person will wait up to three or four times longer for a kidney transplant than a white person, because the best tissue match for a kidney tends to come from a donor who has the same ethnicity as the recipient. (This is a gross over simplification of the tissue matching process, but there is no denying the fact that a larger donor pool from all ethnic groups would reduce waiting times and minimise the number of deaths of transplant listed patients.)

• The longer a person waits for a kidney transplant the greater the risk they have of experiencing other life threatening conditions such as heart problems.

• The of majority non-white families refuse the request for organ donation when a family member dies in circumstances in which donation would be possible .

Despite knowing about the consequences of organ shortages one Muslim student explained to me that his faith would prevent him from being an organ donor. But by the same token he could not receive a transplant either. He said it would be a test of God that he had to endure. I admire his openness, honesty, integrity and conviction. (I just hope his conviction is never put to the test watching a loved one die for the sake of an organ transplant.) Not everyone is so principled – some are willing to receive an organ but would never consider becoming a donor. I can accept that a person may take a principled stand against donation on religious grounds, but why do some opponents of donation feel it is still acceptable to receive a scarce organ?

Even families where a relative has benefited from a transplant have refused permission for donation when a loved one has died. Should I be surprised at this?

Ultimately each individual has to examine their own conscience and decide if organ donation is an act of humanity or not. Quotations from the Torah, the Bible or the Qur’an can be construed to reject or support organ donation. Halacha and Sharia laws can be interpreted in a variety of ways. But what counts is whether an individual person believes that saving a life through organ donation is right or wrong.

For a very balanced discussion on organ and blood donation by a reliogious group please read the attached file of the October 2011 newsletter of the Altrincham Muslim Association.  

(More discussion of religious attitudes can be read under the heading "Diagnosis and Confirmation of Death" further on down on this web page.)

• Distrust of medical processes:

Signing the Organ Donor Register (ODR) is tempting fate in the eyes of some individuals. It will lead directly to a premature death! Worse still it is claimed that if a doctor knows you are on the ODR they will not fight to keep you alive! This is a very genuine concern of many young people. They are not convinced that if they end up facing the prospect of dying in a hospital ward or intensive care unit (ICU) the staff caring for them will not pull out all the stops to keep them alive if they know the patient is on the ODR. Where is the evidence to support such a view?

I am absolutely convinced from my own personal experience that medical care staff will move heaven and earth to keep someone alive. It would have been much easier and cheaper to allow me to die when I had my stroke in September 2005. I was already listed for a heart transplant, but the stroke raised serious doubts as to whether I would actually survive a transplant operation. When my kidneys failed in October 2005 I thought my life was over, but the care staff in the Wythenshawe ICU battled hard to keep me alive. None of them knew whether I was on the Organ Donor Register. None of them stood to gain professionally or personally if I died.

In fact the opposite is true. The mortality rates are recorded for all hospitals. A consultant would have been asked to explain why I had died – the staff would have been held accountable. As an additional safeguard two doctors are usually involved in the diagnosis of death. I know many doctors and nurses. Just from the point of view of personal integrity and compassion they will do everything feasible to keep someone live up to the point when the care they can offer does more harm than good. Only when care is no longer in the best interest of the patient will treatment be withdrawn. At this point the care team will discuss the possibility of organ donation by involving a Specialist Nurse for Organ Donation. The team as a whole will discuss if the dying patient would be suitable for donation. Well under1% of deceased patients die in circumstances that allows solid organ donation to take place.

When the patient’s family understand that treatment is to be withdrawn and their loved one will die, only then should the issue of organ donation be discussed. Families may raise the subject earlier than this though. The subject will be raised as part of the end of life choices the family may want for their relative. A member of staff will check the Organ Donor Register (ODR) to see if the person’s living wish was to be a donor, but the issue should be discussed even if the person was not on the ODR.

I appreciate that not everyone will be re-assured by my experience of the NHS and my explanation of the organ donation discussion. The medical staff who manage the care of patients do not decide which people become donors. The organ retrieval and transplant medical teams are completely separate people from the hospital care staff where the patient is being treated. Transplant surgeons have the ultimate decision on which organs can be used for transplantation, but only after the patient or the patient’s family have given their consent or authorisation for donation to take place. Despite cynical views to the contrary the role of the NHS is to keep people alive. In fact, better management of strokes, heart conditions and head traumas have limited the number of patients diagnosed as brain stem dead who might be potential donors.

The entire organ donation and transplant process is highly regulated and monitored by the Department of Health, the Human Tissue Authority, NHSBT, the Nursing and Midwifery Council and the General Medical Council. Any health care professional would be risking their career if they contravened the national regulations which demand that the issue of organ donation is only considered after every measure to keep the patient alive has been exhausted.

• Social barriers to registration:

There is a vague link between the socio-economic class of a person and whether they will sign the Organ Donor Register (ODR). The so-called middle classes tend to be supportive in this sense. I have not seen any evidence to support the view that middle class families are more likely to support the request for organ donation when someone actually dies.

Areas of high social deprivation are less supportive of the ODR but this may be the outcome of several interlocking factors such as literacy levels, quality of access to the NHS, prevalent value systems within the local community, ethnicity and so forth. There are geographical variations too. In 2011 36% of the Scottish people have signed the ODR which is the same level of support shown by people living in South West England. But support is lower in Northern Ireland (27%) and the North West and North East of England (25%). Can this be explained by cultural or class differences or simply better marketing in Scotland and the South West of England?

A person’s perception of how they are valued by society generally may influence their decision to sign the Organ Donor Register. People who believe that society has treated them unfavourably may be disinclined to become registered donors. High levels of unemployment, poor housing and poverty do not exactly encourage people to take a benevolent view of their fellow citizens in relation to donation. Any person that has had a bad experience with the National Health Service is very unlikely to agree to organ donation. Families who have watched a loved one die whilst waiting for a transplant would be incredibly tolerant and forgiving to then agree to organ donation. But this has happened.

• Diagnosis and confirmation of death:

The process of dying has become highly ‘medicalised’ over the last century. Most people do not witness someone dying. Death takes place often in clinical and remote circumstances away from public view – sixty per cent of people die in hospitals in the UK. This has allowed many misconceptions about death to develop that colour our perceptions of this process. The dead are often held in mortuaries and moved to the undertakers – removed from public gaze. Generally only close family members pay their respects by viewing the dead person; younger members of the family are often shielded from this experience. The days when the dead were ‘laid out’ in the front parlour for the community to come and show their respects have long gone.

This cultural change creates uncertainty about the dying process simply because of the lack of involvement for most people. An example of this is the ignorance surrounding the diagnosis of death. In particular there is a view held by some groups that donation after brain stem death is not acceptable. This view is expressed on medical and religious grounds. Some Roman Catholics, Jews and Muslims believe that death only occurs when there has been a permanent and irreversible cessation of the heart. But if a person is mechanically ventilated the machine can keep pumping oxygen around the body even though the brain is dead. In all cases cardiac death follows very rapidly after the ventilator is switched off. Cardiac death leads to brain death and brain death leads to cardiac death. Either way the patient is dead regardless of whether the person wants to be a donor. People who do not accept this explanation will not sign the Organ Donor Register – they will not become donors. But it is very difficult to get across the fact that dead means dead, because the whole subject is so taboo in UK culture.

If you trawl through the Internet you will find articles put forward by all religious groups either in defence of or in opposition to organ donation. The links below are just a few examples of how the Jewish faith addresses controversial and conflicting views on organ donation. They relate to the views expressed by the UK Chief Rabbi Jonathan Sack in January 2011 following a statement that the London Beth Din court does not accept that the diagnosis of death by brain stem testing is compatible with Halachic criteria. This guidance conveys the idea that Jewish people should not donate organs following brain stem death, but non-Jews can. Yet Jewish people could receive organs from brain stem dead donors – should this double standard be tolerated? This double standard isn’t accepted in Israel where a preferential system of organ allocation has been introduced in 2011. If an Israeli person has registered to be a donor or someone in their family has actually been a donor, then they are given preferential treatment to receive a transplant over people who are not registered. Given there are so few registered donors in Israel anyone not on the register is unlikely to receive a transplant. This mechanism removes the double standard. In practical terms this means that someone not registered to be a donor will be very lucky to receive a transplant.

Does the opposition to donation after brain stem death really matter? It most certainly does. In 2010-2011 in the UK 3,740 organ transplants were carried out. Living donors contributed 1,045 organs to this process. Deceased donors provided organs for 2,695 transplant operations – 1,975 of these organs came from donors diagnosed as brain stem dead. If left to the wishes of Chief Rabbi Sacks these 1,982 patients would not have received transplants in 2010-11. This would have led to the certain death of 130 heart transplant patients such as myself because in the UK hearts can only be retrieved from brain stem dead donors. There would also be 960 kidney patients that would still be on dialysis or possibly dead, 140 lung patients would be struggling to live without their transplant and 564 liver patients would be denied their transplant. In the UK, between April 2010 and March 2011, 73.5% of transplants were made possible through deceased donation coming from brain stem dead donors. What value do we place on the lives of these patients? Chief Rabbi Sacks needs to think again. Surely our humanity should be judged not by our beliefs or faith, but by our actions – or lack of them when it comes to organ donation.

The Jewish faith is not alone in tussling with these moral and ethical dilemmas. But I leave you with four Internet links that illustrate the conflicting views just within the Jewish faith: The views of the UK Chief Rabbi Jonathan Sacks: [Guardian article web link] or [The Office of the Chief Rabbi web link]

The views of Joel Braunold: [Guardian article web link]

A response from the Rabbinical Council of America from the ‘Failed Messiah’ website: [Article web link]

I must stress again that it is not just the Jewish faith that experiences these internal tensions in relation to organ donation. Christians and Muslims are divided on very similar issues too.

Instead of putting my faith in religious beliefs fashioned centuries ago I prefer to put my trust in guidelines and regulations designed to protect the best interests of patients in the twenty first century. On the issue of diagnosing death I put my faith in the ‘Code of Practice for the Diagnosis and Confirmation of Death’ produced in the UK in 2008. The UK Academy of Medical Royal College committee chaired by Sir Peter Simpson outlines the procedures that have to be followed by all medical staff in the NHS. It is an insult to the integrity of dedicated, professional clinicians to suggest that the procedures stated in this document are not acceptable on any grounds. It is even more offensive to imply that withdrawing treatment following a diagnosis of brain stem death is tantamount to killing a patient. To then justify this on non-scientific, religious grounds is not responsible. For those of you who would like to make a more informed and objective judgement on this sensitive issue please read the guidance yourself by clicking on the following button – but you might need the help of an intensive care consultant to understand it!  

These UK guidelines build upon years of medical discussions to update the diagnosis of death that can be tracked back to the Landmark article Aug 5, 1968: “A definition of irreversible coma. Report of the Ad Hoc Committee of the Harvard Medical School to examine the definition of brain death.”

“Our primary purpose is to define irreversible coma as a new criterion for death. There are two reasons why there is need for a definition: (1) Improvements in resuscitative and supportive measures have led to increased efforts to save those who are desperately injured. Sometimes these efforts have only partial success so that the result is an individual whose heart continues to beat but whose brain is irreversibly damaged. The burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients. (2) Obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” The reference source for this report can be found at the following web link: [Reference web link]

The Harvard guidance makes it quite clear that the use of neurological criteria for diagnosing death is to determine whether a patient in intensive care would be capable of surviving the withdrawal of mechanical ventilation. Mechanical ventilation is designed to support a patient’s respiratory function to buy doctors the time to treat the patient back to some level of recovery and quality of life. The dilemma is then for clinicians to decide whether a patient is actually alive or whether it is the mechanical ventilation that is sustaining the patient’s oxygen supply. Brain stem testing allows two experienced doctors to examine the cranial nerve activity that supports life. Doctors should not continue to treat a patient if this care is not in the best interests of the patient. This causes further harm to the dying person and increased distress for relatives and friends if recovery is not possible. The neurological criteria for diagnosing death are designed to limit this distress. The process confirms the death of the patient and ‘futile’ treatment can then be legally withdrawn. This is a legal safeguard for the clinicians involved when withdrawing treatment. This process gives the family the absolute confirmation of death. It is not clear whether Chief Rabbi Jonathan Sacks appreciates the significance of this fact from the family’s perspective. Or is his objection to brain stem testing only in the context of when this is followed by clinicians asking families for consent to retrieve organs?

I fully appreciate my views on this issue are not impartial. If donation after brain stem death was not legal I would be dead now. So too would thousands of other people around the world. In an attempt to retrieve some objectivity I have added some further web links that will introduce the reader to other views on the diagnosis of death using neurological tests.

Eelco F.M. Wijdicks carried out a survey of how neurological criteria are used for diagnosing death in 2002 entitled “Brain death worldwide: Accepted fact but no global consensus in diagnostic criteria.” [Wijdicks’ article web link]

The following article provides a very detailed account of Muslim views regarding the diagnosis of death and organ donation: “Islam and End-of-Life Practices in Organ Donation for Transplantation: New Questions and Serious Sociocultural Consequences.” by Mohamed Y. Rady • Joseph L. Verheijde • Muna S. Ali. The article can be found at the following link: [Islamic perspective web link]

The arguments surrounding the neurological diagnosis of death have gone on for over fifty years and will continue to do so in the future. The search for a universally accepted definition will continue, but a universal consensus on this issue is probably beyond our reach.

From a Roman Catholic perspective, before he became the Pope, Cardinal Joseph Ratzinger possessed his own organ donor card. He has given many interviews supporting the moral acceptability of saving another person’s life by becoming an organ donor after your death.

But it was announced in February 2011 that Pope Benedict (formerly Cardinal Ratzinger) will not be an organ donor as the whole of his body will belong to the Church. But this stance does not apply to other Roman Catholics. Until the early twentieth cenury there was a tradition that Popes were embalmed when they died. Curiously the bodies have their internal organs removed to make the embalming process more effective. So they entered heaven without their bodies being intact.

The following web based articles illustrate the range of interpretations that prevail within the Catholic Church.

[Web link for an Australian Catholic perspective.]

[An article from the Times.]

[An interview with Cardinal Ratzinger before he became the Pope.]

The Right Reverend James Newcome is the Bishop of Carlisle. He speaks for the Church of England on health care issues. In April 2011 he issued for the following statement:

“As we prepare to celebrate Easter, we think of those central events in the life and ministry of Jesus: the crucifixion and the resurrection. Among other things, they speak to us of self-sacrifice and new life; self-sacrifice in the service of others and new life offered to others. What is true spiritually often has echoes physically or socially. One such echo may be found in the sphere of organ donation where we have the opportunity to enhance, prolong or even to save another person's life through our self-giving. That donating our organs is a selfless gesture of care to others is undoubted; what is less often recognised is the extent of the need for organ donors.”

The Bishop’s full statement can be read at the following web link: [Church of England article on organ donation.]

With just 30% of UK citizens on the Organ Donor Register the Church of England maybe has to work harder to share its convictions with its parishioners. The Archbishop of York and the Archbishop of Canterbury have been remarkably silent on the issue of organ donation.

Donation after death will always remain a challenging issue because the definition of death cannot achieve a universal agreement amongst all cultures and religions. This point is well demonstrated in a 2007 BBC discussion which can be found at the following web link: [BBC Ethics and Religion discussion on organ donation.]

In a liberal democracy such as the UK religious tolerance gives every individual the right to make their own mind up about a range of sensitive issues. Most religions believe in the sanctity of life. Transplants save lives...surely organ and tissue donation is a virtuous deed? What greater act of humanity is there than to save someone’s life? Every individual can act according to their own personal conscience when it comes to the issue of organ and tissue donation. None of the major religions in the UK object to the idea of tissue and organ donation. The decision is one of personal choice – yet religion is often used by people as a justification for not being a donor.

• Age:

I wish I had £1 for every person that has said to me “I’m too old to be a donor. My bits wouldn’t help anyone!” How wrong such people are. Yes, there is a natural age limit to people giving solid organs. This age limit varies with the organ in question. The overall age limit for solid organ deceased donation is 85 years of age, but exceptions are made if the donor was very fit and active prior to their death.

Age limitations for tissue donation are less restrictive. What is more important than a person’s age is the quality of their general health when they died.

If potential donors had certain medical conditions such as multi-organ failure, blood borne cancers, CJD, HIV disease, untreated malaria, active melanoma and tuberculosis generally they would not be considered for organ and tissue donation. But this is not a fixed rule. For example, a deceased donor with a cancer tumour may have an organ removed and this might be given to a recipient who also has cancer. The same might be true for HIV. The receiving transplant surgeon will make the final decision in such circumstances. A common misconception is that people with poor eyesight cannot donate their corneas after they die. This is not true. The corneas have to be free of disease and scarring – regardless of whether the donor was short or long sighted.

According to recent records (2011) the oldest deceased kidney donor in the UK was 86 years old. I have personally met with an 81 year old living kidney donor. The oldest cornea donor was 104 years old! A recent BBC One TV programme called “Transplant” (broadcast on Wednesday 7th October, 2011) showed a 65 year old donor’s heart being received by a 16 year old girl. Overall guidance from NHSBT advises that donors should not be over 85 years old for solid organ donation following brain stem death or over 80 years old after circulatory death. (October 2011)

Many people are not aware of the above facts. Consequently they do not register to be an organ donor because they think they would not be able to donate. Age does limit whether a person can be a heart, lung or liver donor – 65-66 years of age tends to be an upper limit. These age limits do not apply to potential tissue donors and there are no barriers to donation for research purposes, but the potential donor would have to let their family know about their wishes to donate for research purposes – the Organ Donor Register does not give this particular option. With all types of donation family involvement and support is vital.

Children of any age can register to be on the ODR, but parental permission/consent/authorisation for donation would have to be granted for donation to take place if the person was under 18 years in England or under 16 years in Scotland. In England neonates and babies up to the age of 2 months cannot donate solid organs following a diagnosis of brain stem death (only after circulatory death). So the UK has to rely on European countries where these tests are allowed to supply donated hearts for transplant purposes with British babies.

• Individualism:

As far as possible, liberal democracies attempt to protect individual autonomy from state interference. When individual rights and freedoms are constrained by the law this is justified on the grounds of achieving a greater good for society as a whole. The smoking ban in public places is justified on this basis. The imposition of speed restrictions on public highways are designed to protect the individual driver, as much as the general public, from the dangers of high speed driving. The same could be said for the drink/drive laws and so on. These are decisions enshrined in Acts of Parliament that are designed to benefit society as a whole. They also protect individuals from themselves. But how far has the state the right to do this? Is there a clear line over which the state should not step?

Libertarians would argue that the state in the C21st has over-reached its responsibilities. The disparaging term ‘The Nanny State’ is coined to deride the welfare measures that have been developed in the last century and that continue today. People complain that the government taxes the British population too heavily and spends this revenue on projects that are not universally supported or valued. The argument goes that our lives are regimented by the state from the cradle to the grave. Much social legislation can be applauded or criticised on these grounds, depending on your political persuasion and your assessment of the welfare state. Do the benefits of state regulation outweigh the loss of individual autonomy?

For some people the very existence of the Organ Donor Register, run by the state, is an affront to civil liberties even though everyone has the individual choice to join the register or not. The social and economic costs of caring for someone with end stage organ failure are high. In financial terms alone patients that are on dialysis because of kidney failure have over £1 billion spent on their treatment out of the NHS budget paid for through taxation. If the majority of these patients received a kidney transplant this cost would be significantly reduced and their quality of life would be greatly improved. Society as a whole would benefit if fewer people were on dialysis. About 7,000 people a year suffer end stage kidney failure and the number rises each year.

John Harris, Professor of Bioethics at Manchester University, reasons that everyone would want their lives saved or enhanced by a transplant, so everyone should be an organ donor when they die if they fulfil the clinical criteria for donation – no consent, assent or authorisation required. Everyone is treated equally to share the burden of responsibility in a fair and equitable way. This amounts to compulsory organ retrieval. I am sympathetic to his point of view even though this removes individual autonomy and choice. The reality of day-to-day politics is such that I suspect that no political party or government of any persuasion would implement compulsory organ donation. Tragically, 57 years after the first successful kidney transplant in 1954, people continue to die for the sake of an organ that most people have two of. In this instance the right to freedom of choice trumps the right to another person’s desire for life. But we all have a moral responsibility to resolve this dilemma. In the meantime patients just quietly fade away - out of sight and out of mind.

• The 'George Best' factor:

What can I say about these two men? They were my heroes as a football crazed teenager. How sad is this……… they have the same initials as me! As a kid that was really significant! The dazzling skills of George Best thrilled crowds throughout the country – he was the first playboy soccer megastar. [Web link to George Best on YouTube.] Gordon Banks was the consummate professional – probably the best goalkeeper in the world of his generation. Check out some of his world class saves on YouTube. [Web link to Gordon Banks on YouTube.]

So why do these men feature in this website section about transplants? The Ulster superstar is the focus of concern. George Best received a liver transplant at the King’s College hospital in London back in August 2002. He had a highly publicised history of alcohol abuse. Despite receiving clinical help to fight alcoholism George Best continued to drink after his transplant. He died of multi-organ failure in November 2005 at the age of 59 year. Professor Nigel Heaton, the surgeon who carried out Best’s liver transplant said "Livers are in short supply and the waiting list has grown over the past two to three years. If you knew someone was going to be recidivist you wouldn't take them on for a transplant. The problem is there's just no way of spotting who those people are."

Shortly after his transplant operation, Best was fitted with an implant designed to make it painful for him to drink alcohol. The implant, which is typically placed under the fat around the stomach, releases a drug into the blood stream that prevents the body breaking down alcohol properly.

Speaking back in 2003, Dr Robert Lefever, who runs an addiction centre in Kent, said that given Best’s age and lifestyle, he should not be "the most urgent item on the NHS agenda".

"We know that George’s liver was in such a state that he would have died without the operation so from a physical point, he had to have it," he said. "But the implants he was given aren’t always successful. Patients may feel ill drinking on them but then the cravings for alcohol can just over-ride that.”

"A liver transplant will not always save a patient’s life because it’s not a cure for alcoholics. Research in the United States has shown that transplant patients who go to Alcoholics Anonymous meetings stand a much better chance of keeping up their sobriety."

He added: "Livers for transplant are a scarce resource and people in George Best’s position need to respect that. I’m not saying an addict should be punished as they do have a clinical addiction, and chronic addiction is an illness, but they should be made to face up to this; to commit to a programme of recovery. If they fail to do that, they should pay for subsequent treatment themselves." (Source: The Scotsman 14th July 2003)

Regardless of the organ failure under consideration, should someone who has contributed to their own disease or medical condition be permitted to have access to scarce medical resource such as a donated organ? Should a smoker receive a lung transplant? Or an obese person get a replacement heart? Are recreational drug abusers entitled to a kidney? Or should an alcoholic receive a liver?

In discussions with many students the resounding answer is “No” to these questions. They feel so strongly about this issue that some people refuse to sign the Organ Donor Register because they cannot dictate who should receive their organs. They would like to make organ donation conditional. They would not want their organs going to anyone who has abused their own health.

George Best is frequently cited as the reason for this stance. They would only donate their organs to people who have not induced their organ failure. But how far can this be taken? What if a non-drinking car driver exceeds the speed limit and damages his liver in a car accident? Should they receive a scarce liver? What about the sky diver who is seriously injured on landing and punctures their lungs so they require a transplant? Does this principled position apply to anyone who has contributed to their organ failure either wilfully or accidentally? Who decides? I suspect that this attitude is only expressed because there is a shortage of organs. Organs have to be rationed to recipients who will make the ‘most’ of them. To some students this does not include anyone who has led a chaotic lifestyle and abused their bodies. I suspect they would hold this view even if there was not a shortage of organs.

The same hard line attitude is expressed in relation to murderers, rapists and paedophiles. It would seem that only the ‘good’ are entitled to a lifesaving transplant procedure. Is this a rational view? A compassionate stance? Who defines the meaning of ‘good’? I thought the NHS was available to all regardless of personal background and circumstances.

From a totally different perspective, there is a very real argument that addicts should not be held responsible for their alcoholism or drug abuse or over-eating. Alcoholism, for example, is a modern social disease that tragically can lead to addiction and death. Whenever we take our first glass of wine or beer can we ever be certain whether this will lead to simple pleasure or a tragic addiction? The hard line view that alcoholics should not receive a liver transplant cannot be justified on the grounds of equal human worth and fairness. We should all be careful about what we wish for.

It is very hard for us to emphathise with families watching a loved one die because of organ failure, because this event does not impinge upon our daily experience. It must be a very painful experience to know that for the sake of a transplant operation your loved one could have their death postponed. Surely the family of George Best was entitled to the hope that a liver transplant would keep him alive. Despite clinical support he was unable to beat his addiction and that is why some people will not donate their organs, because they do not want the organs to be ‘wasted’on a recipient who will not look after them. Yet burying or cremating organs after death is an absolute, guaranteed waste of organs and tissues.

I fear that the demand for solid organs will always exceed supply. Consequently we will always struggle with how to allocate these scarce lifesaving medical resources. Allocation criteria are very difficult to define in a manner that is fair to everyone. (See the separate section of this website called ‘Scarcity and Allocation of Organs’ which will appear soon.) There is a logic to the view that organs should be allocated to patients who are going to make best ‘clinical’ use of this scarce resource. I stress the word ‘clinical’. If there are seven patients who need a liver transplant for every deceased liver that becomes available, who should receive this resource? Clinically the liver must go to the person who is the best match in terms of blood and tissue type. But what if several people are well matched? Presumably other discriminators have to come into play at this point. The key determinant should be that the liver goes to the patient who will make the greatest utility of the organ defined in health terms. Clinicians have to evaluate which patient has the best chance of surviving a complex operation and then has the physical capacity to recover effectively from the procedure. This assessment will never be based on exact scientific criteria. I was given six weeks to live when I was listed for a heart transplant. I survived for 8 months. I use this example to illustrate the fact that medical science cannot make precise predictions in relation to survival rates.

If the utility criterion (as defined above) is applied elderly patients or people who have numerous life-threatening conditions (i.e. other co-morbidities) will seldom be prioritised for a transplant even if their death is imminent. On this basis I suspect George Best would not have been given a liver transplant because patients have to demonstrate that they can comply with the post-operative demands placed on organ recipients. Alcoholics, for example, have to prove that they can be dry for at least 6 months prior to liver transplant procedure and commit to abstaining from alcohol after the operation. For some patients with alcohol related liver disease the 6 month pre-operation probation period becomes a death sentence. This is the tragedy that Gary Reinbach and his family went through in July 2009.

The following is an extract from the Daily Mail – September 1st 2009.

Gary Reinbach, 22, was terrified and pleaded with his mother to do something hours before his death. His last words to her were: 'Please help me Mum, I don't want to die.'

Mr. Reinbach had the worst case of cirrhosis that doctors had ever seen in a man of his age but they refused to give him a new liver which could have saved his life.

National guidelines dictate that to qualify for a donor organ, a potential recipient must prove he has the determination to stop drinking by remaining abstinent for six months.

This is to make sure there are no more cases like that of George Best - the football legend who continued to drink after receiving a donor liver and subsequently died.

Gary's mother Madeline Hanshaw, 44, told how he begged medical staff to give him the vital transplant just the day before he died. 'Gary had done everything he could to convince doctors he deserved one. He had even begged them straight out to give him a second chance to live,' she told the Mirror.

'But by then, I think he knew he wasn't going to be put on any transplant list. All I could say to him what that I loved him and it would all be OK.' She told how her son had co-operated with every demand from the doctors including giving up smoking and staying in bed to try to show he would stay off alcohol.

'All he wanted to do was prove that he was serious, and that he wouldn't drink again. But he never had the chance to prove himself properly because he was too fragile to be sent home, Miss Hanshaw said.

'He couldn't go against the doctors, but because of that he couldn't have the second chance he wanted so much.' She urged the authorities to change the rules, insisting: 'I wouldn't want anyone else to have to watch their child die the way Gary died.'

More information about this tragic story can be found at: [Read more in the Daily Mail.] or [Read more in the Guardian.]

If Gary was your son, partner, brother, uncle or friend what outcome would you want for him? Be careful how you respond. Personally I would be devastated. There but for the grace of ………….

• Other reasons?

No doubt people have a complex set of responses to the idea of solid organ and tissue donation after their death. Sometimes it will be a simple ‘gut reaction’. Many students I talk to refer to donation as a ‘no brainer’. They reason that you do not need your organs following your death, so why not give them away to help someone else? Other people regard the whole subject of donation as repugnant. They fully understand that lives can be improved and saved through transplants. They realise this could include them or someone they love, yet they cannot bring themselves to register as a donor. Social solidarity and reciprocity are not strong enough motivators to get people to sign the Organ Donor Register (ODR). They may have been the social values that inspired the National Health Service, but they are in short supply amongst some people today.

There will be a variety of overlapping reasons that prevent people joining the ODR. People fear that doctors will not fight to save their lives if they are on the ODR. Spiritual or religious thoughts convince people that their body must be intact in order to journey on into the afterlife. They do not want their bodies desecrated when their organs and tissue are retrieved. They are not willing to accept that this is done in the most dignified and respectful manner that does not increase the grief of the bereaved family. In fact many donor families welcome the request for donation as the only positive outcome following the death of a relative. (See the web articles in relation to Adam Rogers, Danny Harrison and Matthew Ferguson for confirmation of this fact.) Donation does not delay funeral arrangements in the same way that a post mortem can. Despite this reassurance people still do not register to become donors.

The Organ Donor Register is an excellent marketing tool. It is a useful social barometer that explains why we have organ shortages in the UK. Maybe it is time to consider more radical solutions to reduce transplant waiting times and needless deaths. I am absolutely convinced that all patients who die in circumstances where they could be donors should be given this end of life choice routinely. Their families should have the chance to discuss this option as part of the bereavement support that all clinicians should offer in a timely, dignified and compassionate way. After all, how do you know what end of life choices people want unless you ask, regardless of their status on the Organ Donor Register?

Please discuss your views on donation with your friends and relatives. It makes decision making easier for all involved when someone dies.