Organ donation and transplantation — the multi-faith perspectiveMultifaith symposium in Bradford — report by Katherine Wright, Editor - Kidney Life and Barry Firth, St James Kidney Patients’ Association
A conference on “Organ donation and transplantation – the multi-faith persepective” was held at the National Museum of Photography, Film and Television in Bradford, on March 20, 2000.
It was organised by Dr Robin Jeffrey, consultant nephrologist at St Luke’s Hospital, Bradford, Steve Bell, transplant co-ordinator for the Yorkshire region, based at St James’s Hospital, Leeds, and Dilshad Khan, assistant director of equal opportunities, at Bradford Royal Infirmary.
It was opened by Lord Philip Hunt, health minister, who said the Government was doing everything it could to increase donation, with 6,668 people on the waiting list.
From 1997-99 about 11 per cent of all transplants were of black and Asian patients. Overall black and Asian people are three to four times more likely to develop end stage renal failure than white people, and this rose to eight times more likely for older Asians.
As these populations were coming into the age group 40 - 60, more were likely to develop ESRF. He predicted that half the people on kidney dialysis will be from these minority groups. Two important diseases accounted for kidney failure in black and Asian people. Diabetes was five times the rate of the white population, and about 30 per cent would develop it. Hypertension or high blood pressure was at least twice the rate of the white population.
One way forward was to help black and Asian people to improve their lifestyle, with advice on diet and exercise, smoking and drinking. But some people would inevitably go on to develop organ failure.
Only 2.5 per cent of organ donors were black and Asian people. Two thirds of the white population agreed with organ donation, but only a third of black and Asians.
The Department of Health had launched the South Asian Organ Donation Campaign in February 1999, to encourage people to join the organ donor register. Lord Hunt made it quite clear that conditional donation was unacceptable and referred to UK Transplant, which had recently been set up after the controversy over organs donated with racist conditions. “Many people have found great comfort in situation where there was an untimely death resulted in the gift of life for someone else,” he said.
Dr Peter Doyle, senior medical officer at the Department of Health, chaired the session. He said that Spain, Scandinavia and the USA had much higher live transplant rates. There were lessons to be learned abroad.
Dr Robin Jeffrey outlined the scale of the problem and gave a medical perspective.
Chronic degenerative disease afflicts many organs including liver, kidneys, heart and lungs. Much infectious disease has now been eradicated in the Western world and it is the progressive, irreversible organ damage whch produces such a co-morbid and mortal burden in our relatively ageing society. This burden of disease can fall disproportionately on some populations and ethnic groups in the UK, for example the 3-5 fold increase in kidney failure in Indo-Asian communities.
Many vital organs are amenable to transplantation; advances in medical technology are extending the range from liver, kidney, heart and lungs, to others such as pancreas and small bowel. Results of transplantation improve yearly with enhanced longevity and quality of life, and it is now a lack of organs which has become the limiting factor for life-saving treatment.
Over the last decade there has developed very real shortages in organs and it is widely recognised that there is a crisis in this area of healthcare. For some organs, such as kidneys, dialysis can sustain life as patients wait for a suitable match, but for others such as heart, lungs and liver, death on the waiting list has become a stark and frequent reality. In the UK at December 1999, 5396 patients were awaiting organs, including 4740 for kidney, 156 for liver and 500 for the intra-thoracic organs. The waiting list for kidneys has, over the past decade, increased at 5 per cent annually.
Cadaveric transplantation normally refers to the donation of organs from a patient who has satisfied criteria for brain stem death in the intensive care unit (ICU) following an intracranial catastrophe such as head injury or haemorrhage. The patient may have expressed a desire to donate during life, and may have carried a donor card. In the UK, assent is also obtained from the next-of-kin. Those carrying a donor card are encouraged to register approval with the national Organ Donor Register which was set up in 1994 and now holds more than 8.6m names. The allocation of organs is supervised by a statutory body, the United Kingdom Transplant Support Service Authority, now renamed UK Transplant, and is determined equitably by factors such as tissue match, time on waiting list and clinical urgency.
Unfortunately, transplant activity, having grown steadily during the 1980s, became static in the 1990s and has latterly shown signs of tailing off. The number of donors is now below 800 per annum. Why should this be, in spite of persistent publicity given to transplantation, and the high level of public approval?
Firstly, there has been a salutary reduction in the incidence of the two principal causes of brain stem death, namely head injury (in large part resulting from seat belt legislation) and brain haemorrhage. Secondly, modern radiological imaging of the brain and a shortage of intensive beds create a situation whereby comatose patients with a poor prognosis, i.e. those who are potential donors, do not gain access to ICU and die instead on the general wards with loss of opportunity to donate.
Various measures and innovations are being considered to meet the challenge of the organ shortage. These are listed below with some description, as a glossary of terms, which can be referred to during the discussions of the day.
1. Required request: This has been introduced into many states in the USA by legislation and requires that formal enquiries are made of the families of all potential donors in the ICU. The rationale is that a statutory approach would overcome hesitancy by healthcare professionals at a time of such emotional distress.
2. Mandated choice: This requires people to state their donor willingness or not when filing some state of institutional return such as a driving licence or income tax form. The information would be kept on a central register, accessible at time of death.
3. Presumed consent: Legislation would be required to allow retrieval of organs from patients who had not explicitly “opted out” in life by carrying a card or joining a national register. This is the converse of the present “opt-in” system. This system operated in various countries in Europe; in Belgium where family assent is still sought, the donor rate increased from 10 to 22 donors per million population between 1986 and 1997.
4. Organisational changes: These might include a National Transplant Service, increasing the number of ICU beds, training more consultant surgeons and employing more transplant co-ordinators. A centrally controlled and expanded co-ordinator network in Spain has been associated with an increase in the donor rate from 5 to 31 dpm since 1985, the highest rate in Europe.
5. Elective ventilation: This is a manoeuvre, whereby selected deeply comatose patients, close to death, are transferred to the ICU and put on a ventilator to preserve organs for retrieval at death, which is likely to occur in a period of hours only. This would require consent of next-of-kin. This procedure was undertaken by pioneering units in the UK, but, in 1994, the Department of Health deemed it illegal on the grounds that the medical process was not primarily intended for the patient’s benefit, this being a common law requirement in medicine.
6. Non heart-beating donors: This involves the removal of organs from individuals who have died and whose hearts have stopped beating. There is a small period of time during which organs remain viable. Common scenarios would be cardiac arrest in the accident and emergency department and sudden deaths on wards. Donation is requested from the family. This procedure is being undertaken in a small number of UK centres and there is more experience in the Netherlands.
7. Living organ donation: This applies principally to kidneys but there is some experience with liver sections and lobes of lung. Living related donation, for instance from parent to child or sibling, produces significantly better kidney survival than cadaveric donation. There is also growing experience in unrelated kidney donation, usually spousal, which also produces highly satisfactory results. Living donation is increasing in the UK; between 1992 and 1998 it rose from five to 14 per cent of total renal activity. However in the USA it accounts for up to 30 per cent and in Norway up to 50 per cent of transplantation, so there is clearly room for expansion.
8. Xenotransplantation: This refers to the transplantation of organs across species. Most research has focused on the genetically engineered pig kidney. At present, human clinical trials have not yet started because of the obstacle of immunological rejection, fears about virus transmission, and uncertainty over the ethical principles involved. It is at least ten years away.
Richard Annandale, partner, Bevan Ashford solicitors
The legal framework is Acts of Parliament, European legislation and the common law, as developed in courts, supplemented by Department of Health circulars and codes of practice and guidance by Royal Colleges and others. The law needs overhaul. This could be done by finding out what routes the British public wants to take.
The transplantation of organs and tissue from dead bodies is governed by the Human Tissue Act 1961. The Department of Health issued guidance on the Act in June 1975 [HSC (IS) 156] An updated Code of Practice (HSC 98/035) was issued in 1998.
The Act entitles the person “lawfully in possession of the body” to authorise the removal of any parts for:
provided either the deceased requested during their lifetime that their body should be so used (by, for example, carrying a signed donor card) and that request was not subsequently withdrawn or the deceased had not raised any objection during their lifetime and a close relative of the deceased does not object to the body being so dealt with.
Who is the person “lawfully in possession”? Where death is in hospital it will be the senior managers of that hospital. In practice, they will delegate authority to an appropriate person(s), for example the consultant clinician in charge of the patient. Where death is at home then the next of kin, or an executor, will be “lawfully in possession”.
How far will that person have to go to find out whether the family “object”? They have to make “such reasonable enquiry as is practicable”.
Last year in Birmingham relatives would not accept that a patient on a ventilator was dead. It took 48 hours to persuade them. In the case of Tony Bland, the House of Lords ruled that it was not in his best interests to keep him alive.
No cadaveric transplantation can take place until a registered medical practitioner has satisfied himself by personal examination of the body “that life is extinct”. There is no legal definition of death: lawyers rely on doctors to provide “medical definitions” and to sign death certificates. The 1998 Code of Practice recommended that the definition of death should be regarded as the “irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe”. As the irreversible cessation of brain stem function (brain stem death) will produce this clinical state, brain stem death (fulfilled by a number of clinical criteria) was also stated to equate to the death of the individual.
The definition of death is clearly very important in this area as it helps to define the allocation of treatment resources, it enables transplantation to begin and it also draws a line in respect of the criminal law.
A practical example of the importance of defining death was the practice of elective ventilation established with rigorous protocols in some hospitals in the 1980s and early 1990s when potential donors were moved from general medical wards on to intensive care units and placed on ventilation with the consent of their relatives until brain stem death occurred and organs were retrieved. The Department of Health brought this practice to an end in 1994 by issuing Guidance saying that the transfer of the patient to, and treatment in, intensive care was not for the patient’s own benefit and so was unlawful. This Guidance relied on the common law which says that treatment of any incompetent patient must be in that patient’s best interests. With elective ventilation the treatment was for the benefit of a potential organ recipient not for the patient himself.
Living donations are governed by the Human Organ transplants Act 1989. This provides that transplants can take place between genetically related persons. What amounts to a genetic relationship is established by way of DNA tests. Transplants can only take place between other persons if a number of strict criteria are satisfied.
If the provisions of this Act are not complied with, a person who removes or transplants organs could be given a prison sentence or a fine.
Where donors advise that a transplant is in the best interests of a child, that child cannot refuse to undergo transplant surgery. Child M didn’t want to have someone else’s heart and didn’t want to take drugs for the rest of her life.
a) The Human Organ Transplants Act 1989 prohibits any payment for the supply of organs taken from a living or dead person for the purposes of transplantation (other than the reimbursement of expenses). Again, persons contravening the Act can face a prison sentence or a fine. Last Autumn in the States an on-line auction of a kidney raised a bid of $5.7m, before it was stopped as illegal. It was thought to be a hoax.
b) No racial conditions can be attached to the donation of organs e.g. a condition by relatives that all recipients of the organs must be white. The imposition of such a condition may be in breach of the Race Relations Act 1976 and donors complying with such conditions are almost certainly breaking the Act.
In 1995, Kathy and Alan Blades’s daughter, 18 year-old Hayley, was taken ill. She had yellow jaundice for two weeks. Hayley was taken very ill and became disorientated. The family GP was called. He had trained at The Royal Free Hospital, London, and immediately recognised the severity of Hayley’s condition, that toxins were going to her brain.
Hayley was rushed to Grimsby Hospital where she fell into a coma. St James’s Hospital, Leeds, were contacted and Hayley was transferred there. Her condition deteriorated rapidly and she was put on the urgent liver transplant list. Kathy had always carried a donor card, however, her husband Alan was not so firmly in agreement and had never carried a card. Hayley was given only 24 hours to live when a donor became available.
Mr Steve Pollard operated on Hayley on the Saturday evening. Alan commented, after Hayley’s successful transplant, that it was just as well that not everyone thought like him, otherwise Hayley would not be alive. He was now in agreement with organ donation and transplantation.
The whole family rallied around and travelled from Grimsby to Leeds to be with Hayley. She was making good progress and so the family returned to Grimsby leaving Alan at Hayley’s bedside. Kathy was with her other daughter Claire when she heard that Alan had collapsed at Hayley’s bedside. She was asked whether he suffered from any medical condition. His brother reassured Kathy that there was no family history and told Kathy not to panic, as no doubt it was just tiredness.
Alan was fit 45 year old tanker driver. However, it was quickly discovered that Alan had suffered a brain haemorrhage. He was taken to theatre. Kathy was told that if Alan ever regained consciousness that he would not make a full recovery.
Alan suffered an aneurysm and on the Wednesday he was pronounced brain stem dead. Within a week of her daughter receiving a liver transplant, Kathy Blades was consenting for her husband’s organs to be used for transplantation.
Kathy now has a “miracle grandchild” when Hayley gave birth to a boy 18 months ago.
I am 43 years old and have lived in Bradford for the past 30 years. I am now head of business for Ciba Specialty Chemicals at Dubai with responsibility for the Middle East and Indian subcontinent.
Like most families, in particular Asian families, we are a very close family supporting each other, particularly in times of need. We are Muslims. In early April 1997 we learnt that my elder brother Mohammed was suffering from kidney problems. He was unable to walk, was generally short of breath and looked weak as he had lost weight.
Following referral to Dr Robin Jeffrey at St Luke’s Hospital in Bradford we soon learnt that Mohammed had a very serious problem in that his kidneys were about to fail and that it was only a matter of time before he needed to be put on dialysis. This was obviously devastating news for the whole of the family.
At the second consultation with Dr Jeffrey a number of treatment options including dialysis, cadaveric and living related donor transplant were discussed. I was very fortunate to have read about live donors. Newspaper articles had also published stories of people travelling from the buying of kidneys from the poor in such countries as India, Turkey and Russia. Islam forbids the selling or buying of human organs.
My motive for becoming a kidney donor was simply for the love of my brother. However, the story of the poor farmer in India who sells his kidney to feed his family gave me much encouragement. I felt that if the farmer in India can survive with one kidney and have a healthy life style then surely I do not have any concerns in a country with the best available medical facilities.
Once I had made the decision to become a donor I wanted to have the operation as quickly as possible. However, the preparation for tissue matching etc took approximately six months.
During most of this period I had very little time to think ahead to the operation, as I was busy with work. However, there were some issues particularly relating to religious beliefs, which I researched with the help of friends in the Middle East. I was advised that Inqad, an act of giving to others to save someone’s life, is one of the most valuable acts that anyone can do. This leads to Sawab and therefore saving someone’s life though whatever act is considered to be ultimate in Islam.
During this pre-operation period, Mohammed was on dialysis. Whilst dialysis improved his health, the quality of life however was restrictive.
Messrs Pollard and Lodge and their teams carried out the transplant at St James’s Hospital in Leeds in October 1997. The dedication of the transplant team at Leeds was impressive.
Some ten days after the operation, I was home whilst my brother stayed in hospital for a further few days so that his biochemistry could be monitored. The results were very encouraging. I started going back to work approximately three weeks after the operation. After four weeks, I started to carry out gentle exercise. Within six weeks I felt as though I was back to full recovery and exercising to a reasonable level.
Naturally the family was pleased with the progress Mohammed was making, as he was now able to walk and exercise regularly.
Mohammed is back at work, at his law practice in Pakistan. He is able to do whatever a normal person would do on a daily basis.
I feel exactly the same as I did before the transplant. In many ways I feel much more at ease with myself than before having had the opportunity to do something in life.
My life has not been affected by becoming a donor; the only reminder of the operation is a large scar on my body where the incision took place.
I have learnt that life is too short and that it must be valued and enjoyed but above all we need to care for others. There are many myths people use to prevent becoming kidney donors or carrying a donor card. I believe Islam encourages people to help others in time of need. Organ donation is one such means, provided there is no material gain by the donor.
However, lack of awareness and education are sometimes the reasons for people’s reluctance to carry donor cards or become living related donors. Hopefully this conference will encourage people, particularly the Asian population, to make a positive contribution.
I feel extremely lucky to have had the opportunity to become a donor.
Annandale: My experience is that it is not a cause of particular comment in other European countries.
Doyle: Many of these operate the Code Napoleon. France had a disastrous experience in early 90s and have softened the Act, to maintain public confidence. I have been involved in the Council of Europe where 41 European countries discussed donation. We are looking for the right balance between protection of human dignity and at the same time maintaining their right to donate.
Doyle: UKXIRA overseeing xentransplantation is a good example - very wide ranging body.
Gordon Nicholas, NKF: Religious leaders are the most important people in getting the message across.
Ali Asghar: They facilitate and eradicate myths.
Doyle: There has been a lot of discussion recently about when to stop treatment, with reference to a permanent vegetative state. (PVS) The patient should receive the best possible treatment until the last minute. Death is a process, some cells will be alive 48 hours after death has been certified, at a point where there is no possibility of recovery.
There is very clear evidence that once brain stem death tests are done properly and in the right conditions we can be certain that there is no possibility of recovery. I would not expect any clinician to stop treatment before this brain stem death. These conditions apply to other patients on ventilators. We must make sure we understand the difference between treatment of patients in comas.
Robin Jeffrey: There is evidence that brain stem deaths are genuine, with no chance of recovery.
Ali: I would have had the support of my family.
Robin Jeffrey: It is an emotional minefield. We have to understand the family and understand the motives. We hope that people are mature enough to cope. It would open the floodgates if we let anyone do it.
Doyle: It is a big problem, particularly in Norway. Units need to be extremely professional.
Ms Neerja Jain, renal recipient transplant co-ordinator, University NHS Trust Hospital, Birmingham
She has a specific remit to address the needs of the South Asian community and is the first Asian transplant co-ordinator in the UK. She has worked in the field of transplantation for eight years and also has responsibility for some public education and media involvement.
Neerja was the winner of the British Renal Symposium Achievement Award 1998-9 and received a Good Practice award from the Sandwell Health Authority in February 2000. She was invited in an advisory capacity to the Department of Health’s South Asian Organ donation Campaign and spoke at the official launch in February 1999.
She said that a dialysis diet is particularly burdensome to South Asians, since so much of their social and religious life centres around food. There were fewer Asian donors, but they accounted for just under 30% of the waiting list.
There were misconceptions about religious teachings and there was fear and mistrust of hospitals and health professionals.
The short term aim was to raise awareness; the long term to increase the number of potential donors.
Phase one: launched in February 99, with celebrities, e.g. Martin Bashir.
Phase two: Summer 99 Open Forums and appearing at festivals. For literature ring 0845 60 60 400.
“It is very difficult to quantify results,” she said. “We feel the campaign is beginning to take effect and slowly the message is getting across.”
Before a conference in Bombay in 1984, I talked to an extremely conservative Muslim. He was against transplantation because of the difficulty of defining death and because of the effect on poor people - they would become simply spare parts. I argued that if I stopped someone being hit by a bullet, that would be acceptable, but not if I gave organs after death.
What is the decision of Islam? The vast majority of Islam clerics agree that brain stem death is death. We are not as monolithic as people believe. Shariah (Muslim law) has priorities, but the overriding one is support of life.
Minority communities are always suspicious and there is a need to allay the fears of communities about the medical profession. There should be no unnecessary violation of a dead body. Islam agrees with medical research and autopsy. But there are cultural reservations.
I am sure that within a short time we will have all Muslims involved if a fatwa issued by the Muslim Law (Shariah) Council in 1995, removing objection to organic donation, is fully accepted. We will have more Muslim people agreeing with organ donation. Most of the increase will be from young people, the majority of them girls.
Professor Katz became involved in discussions about the relationship between Jewish law, biomedical science and medical practice while working in Israel and he has continued to take an active interest ever since. From the perspective of a Jew he has spoken to both medical and lay audiences on Jewish vantage points about the relationship between biomedical science and religion. Issues about transplantation have been of special interest to his research.
There were differences within the Jewish community but a majority consensus, he said. Principles of Jewish law: the saving of life overrode all else except murder, adultery and idolatry. The main view was that brain stem death was acceptable. In the case of live organ donation, Jews should be concerned with donors.
He told the conference about a 22 year old American whose organs were used for transplant after consulting Rabbis in US and Israel. A scholarship in his name for medical students to study Jewish medical ethics and issues that arise within transplants has been set up, and Prof Katz’s daughter got one of these scholarships.
Once a transplant has been performed, there was permission to care for patient on Sabbath.
He is the first non-white Diocesan Bishop in the Church of England, appointed in 1994.
There is a great deal of agreement in the Church. The paradigm is Jesus Christ. Organ donation is an altruistic act which is motivated by compassion and a sense of social responsibility. Christians should, generally, be encouraged to reflect on how they can help those in need, even after death.
There are some concerns, nevertheless, about respect for the dead, the integrity of the body at the time of death and how organs are harvested. We need to consider the ethics of new technologies such as xenotransplantation and autografting.
Christian faith’s belief in life-giving death and resurrection of Jesus Christ is the starting point for understanding a Catholic Christian perspective on organ donation and transplantation. To offer an organ, lovingly and unselfishly, that another might live, mirrors in some small practical way, the life giving self-offering of Jesus.
Within the ethical framework of respect for human dignity, the Catholic moral tradition has welcomed organ donation and transplantation, as shown in the teaching of Pope John Paul II and the Catechism of the Catholic Church.
The moral parameters of this are specified as necessary consent, utmost respect for potential dying donors, comprehensive definition of death and ethical criteria for transplantation between living donors and recipients. All of this is explored within the context of charity, disinterested self-giving love, responding to the command and the example of Christ.
There was consensus and common ground. Daana (donation in Hindu) was selfless giving - had to be non-commercial.
Ahimsa - not harming others by thought, word or deed. Basic first and most important of the yamas (restraints).
Hindus are keen on giving blood - told to give at least once a year.
Vegetarianism - compassion with animals, avoiding animal experiments or sacrifice.
Acts of sacrifice, charity and penance should be done. They purify even the great souls. All these should be performed as a matter of duty, without attachment or any expectation.
NAMASTE - greetings from this soul to you all (souls).
Sikh meant to be a scholar who seeks the truth. Sikhs needed to get together to make decisions. They avoided dogma. Body was an irrelevance in the scheme of things. Sikhs had no problem with donation, because of the emphasis on sacrifice. They usually cremated bodies. There had to be respect for the body. Human dignity was important.
Xenotransplantation would be acceptable as long as it involved no cruelty to animals.
Minority communities tended to be insular.
Sri Lankan born Buddhist monk who has been working in the UK for over 11 years. He is the founder of the Ketumati Buddhist Vihara, Manchester, and is the monk in charge.
Buddhists totally agree with organ donation. It was quite acceptable.
Nurse from an ICU said that patients in ICU received the best of attention and brain stem death tests were valid. “I would still donate my organs,” she said.
Dr Bhala said that two experienced doctors not connected with the transplant decided on brain stem death.
Dr Badawi said the majority of Sunnis agreed with fatwa and a minority of Shiites.
Muslim from the Midlands suggested that places of worship should be used for meetings to talk about organ donation.
A member of the audience asked if medical science was trying too hard to keep people alive? Any chance of brain transplants?
Badawi - whole aim of medicine to keep you alive. Angel of Death will catch up eventually.
Bishop of Rochester: Judo Christian tradition is body and soul together. Indian religions - soul lives in body then moves on.
Doyle: Not extension of gerontology - focuses on people whose life is likely to end prematurely.
Transplant surgeon in London said his job was to prevent untimely death.
Can we donate whole body as well as organs?
Doyle: Anatomy Act has to have whole body, so can’t use one which has been used for transplants.
Lilian Rutherford, NKF member: She said she had had two transplants, the current one has lasted 13 years. She has been a renal nurse for 10 years. “We must work together and ask how all we must join in one total community,” she said.
Dr Michael Wilks, chair of the BMA ethics committee. He refuted any suggestion that medicine will move into hastening people’s deaths. The guiding force had to be respect for patient. It makes it difficult for us to see how we can use elective ventilation. If we moved to elective ventilation we would have to redefine brain stem death.
Doyle: Very important point. Only two countries making any progress are Scandinavia and Spain. They do that by having dedicated staff on the ground.
Bishop of Rochester: “I am clear that there is a gulf between presumed consent and own consent. It seems that only 1:5 are in favour of presumed consent. Mission statement of research should be to look into somatic cells.
Doyle: Work is going on on stem cells but it will be at least ten years before anything of practical value will emerge.
Dr Katz: Heart and liver possible with stem cells. Anthony Nolan Trust was an example of grass roots effort that resulted in tremendous support.
Phil Hatton, transplant co-ordinator. A woman whose son died in an ambulance was angry that his organs had not been used. She had no idea of brain stem death.
Jackie Godfrey, Liverpool transplant co-ordinator. Spain has invested more in infrastructure. It has more ICU beds. Everybody needs to be more pro-active.
Camilla Diaz, Liverpool CHC. We got schools to visit the Liverpool mosque. We have got to be pro-active and reach out to leaders to take a stand.
Nigel Goodfellow, chaplain at Freeman. He raised the question of age of decision, based on experience of Child M. The answer was 16.
Doyle: Presumed consent was not practised in Europe. Medical team had to get donor’s medical history from family. If they are against it, don’t use the donor. This happens in Austria, Belgium, and France.
Donor mother from USA praised the conference.
Professor Sandy Davison, consultant nephrologist at the Lees teaching Hospitals NHS Trust, summed up the conference.
He told us that it had been a most interesting day and not quite what he had expected. Thirty years ago the discussions would have been about whether or not to transplant, not to discuss altruism in donating. There was a remarkable consensus of positive opinion from the religious leaders, but it seemed there was superstition in the communities which could be counter to religious opinion. This needed to be removed.
The Right Reverend David Smith, Bishop of Bradford, who had welcomed the delegates to Bradford, had said that as a layman he needed to understand more, but Prof Davison said that not only lay people needed to understand, but health care professionals needed to understand the feelings of people undergoing transplantation so as to give the best service.
The need for organ donors is not getting any better as the number of patients on dialysis is increasing by seven per cent annually, meaning that in seven years the numbers on dialysis will double at a cost of £25,000 per annum for each patient. It is obvious that we need to transplant as many as possible.
Richard Annandale said that the law needed a radical overhaul. Prof Davison was concerned about any radical moves as people’s worries about transplantation can only be won over slowly. In fact, radical moves can mean a community turning against the initial idea. A TV programme discussed brain stem death some years ago and managed to cast doubts in the minds of potential donors and their families. In Yorkshire, for three months from the evening of the transmission, there were no donations at all.
Many problems need teasing out but it all takes time. For example, xenotransplantation was mentioned. Prof Davison did not know whether the time period of ten years for it to be introduced was right. It may be five years, ten years or not at all, but it is important to discuss ideas in order to move forward.
We need to take care that when looking at ideas from Europe for increasing donor numbers and remember that we cannot just lift a practice, from Spain for example, and use it in this country. By all means study the principles that make it work, but they must be integrated into different communities. It seems that informed consent is wanted, but the idea of presumed consent is very difficult, so we must be very cautious when considering it. He also felt that religious leaders have a central role to play in propagating ideas and introducing them to their communities.
Another common theme was that medical staff should always remember the dignity of the potential donor.
Donation needs to be encouraged by overcoming fears of the communities. Adverse publicity makes the job so much more difficult. Fears that because you carry a donor card staff will work less hard to save your life so your organs can be used must also be allayed.
There needs to be more co-ordinators who are provided with good background information so that they can go out into communities and provide good answers to these and other fears.
He rounded off by saying that the dialogue needs to be kept going and go for the evolution of a service that communities find acceptable. The day had been outstanding, comments totally fascinating and he had thoroughly enjoyed it. He looked forward to another meeting like it.
There is a multifaith symposium website: http://website.lineone,net/~multifaithtxsymp
Click here to read the Organ Donor Campaign report — Faith & Organ Donation (November 2010)