Making it Real
Living Donation is the Solution
By Sue Gianstefani
Published for the Flesh and Blood Organ Donation Ethics Study Day, Durham Cathedral, February 28, 2015.
Today’s study day (at Durham Cathedral) will not doubt be focussing on the need to encourage people to become organ donors after death to solve the problem of 300 people a year who are dying while waiting for an organ to become available for a transplant, as well as the 7000 people suffering from organ failure on the transplant waiting list.
I have published this booklet in the hope to offer an alternative solution to this problem.
I don’t see living organ donation as a unique alternative to deceased donation, but rather a complimentary and preliminary method of organ donation. If we promoted and thereby increased the rate of living organ donation in Britain, it seems natural that the consequences would be an increase in consent for deceased donation as the next best thing. People who have heard of or considered living organ donation will be less shocked by the concept of deceased organ donation.
The lack of promoting living donation.
Currently there are not enough donors to fulfil the need for transplants in the UK. The majority of organisations and well-meaning individuals who are trying to increase organ donation rates are actively trying to increase the number of deceased donors by promoting and encouraging people to sign to the organ donor register and to inform their families of their wishes. This is one way of increasing organ donation and for people waiting for hearts and corneas, this is the only option. But the other option to increase kidney, liver and potentially lung transplants is to promote living donation, but this is rarely mentioned and in most cases is completely ignored when promoting and discussing organ donation.
For example, the British Transplant Games last year did not mention living organ donation in any of their promotional literature or in the speeches made at the opening ceremony, despite the high numbers of competitors who would not have received a transplant if it wasn’t for a living donor.
The Women’s Institute said:
We discussed your kind offer to come and speak to members about living organ donation and although we feel it is an important issue we agreed it might cloud the main thrust of the WI's campaign to do with informing loved ones of wishes related to organ donation after death.
Many people find the subject of organ donation emotionally difficult, due to the misconception that it can only happen if someone tragically dies. This publication hopes to share information about living donation that might change this unfortunate trend.
What are the chances your organs be donated to someone in need when you die, if you sign the organ donor register?
The major problem with deceased donation is that last year there were 570,000 people who died but only 5,490 of those people died in the right circumstances to be eligible potential organ donors. Irrespective of consent to being an organ donor, the chances of being able to donate an organ when you die is less than 1%. That means that the circumstances in which people die instantly rule out 99% of any of us being a possible organ donor after death.
On top of that, of those 5,490 people who died in the appropriate circumstances last year only 1,320 became actual organ donors due to additional reasons, only one being the issue of consent.
Considering being a living organ donor is the surest option of actually becoming an organ donor. Otherwise there is a 99% chance your organs will stay with you after your death.
UK Potential deceased organ donor population, 1 April 2013 – 31 March 2014
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population 63,000,000
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deaths in hospital 28,300
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potential donors 8,157
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eligible donors 5,490
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donation requests 3,247
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consented donors 1,999
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actual donors 1,320
Sources and refs:
Mid 2012 estimates: www.ons.gov.uk
2012 data: England & Wales www.ons.gov.uk; Scotland www.gro-scotland.gov.uk; Northern Ireland www.nisra.gov.uk
2012 data: England & Wales www.ons.gov.uk; Scotland www.isdscotland.org; Northern Ireland www.nisra.gov.uk
2013/2014 data: NHSBT, Potential Donor Audit
Potential donor - patients for whom death was confirmed following neurological tests or patients who had treatment withdrawn and death was anticipated within four hours
Eligible donor - Potential donor with no absolute medical contraindications to solid organ donation
2013/2014 deceased donor data: NHSBT, UK Transplant Registry Using organs from actual donors in the UK
Increasing the rate of deceased donation by 600 donors is going to mean “making huge strides” from what is presently being achieved with all the publicity, strategy and resources currently being employed to promote deceased donation.
Although the consent/authorisation rate increased slightly from 57% in 2012/13 to 59% in 2013/14,
we have to make huge strides if we are to achieve the ambitious 80% target by 2020.
Source: Professor Mark Bellamy, Professor Anthony Warrens, NHSBT Activity Report, 2013/14 page 5
Even if the UK had a consent rate of 80%, judging from the above figures for last year, this would have only meant a maximum additional 599 organ donors.
The current active transplant waiting list is over 7000 people (This figure does not include more than 3000 people who have been suspended from that list). 5363 of the people on the active transplant waiting list are waiting for a kidney transplant. The addition of 600 deceased organ donors (if the consent rate had been 80%) would have potentially contributed an extra 1200 kidneys. This would still not be enough to fulfil the need for organs such as kidneys, which are the easiest organ to transplant from a living donor.
Why are so many people not seeing the obvious potential of living donors to solve this problem, in particular for kidney transplants?
History
The first kidney transplant in the UK was from a living donor to his identical twin in 1960.
Source: Hakim, Nadey (2010). Living Related Transplantation. World Scientific. p. 39.
Before 2006 living donation was only legal between family members and close friends. In 2006, the law changed in the UK allowing altruistic living organ donation, where someone can donate an organ to a stranger on the organ waiting list.
Benefits of living donation
Living organ donation, where possible, is better than deceased organ donation.
• The live donor organ is the best quality organ.
• A living donor transplant eliminates the long wait time (average 3 years) on the deceased donor waiting list and can be performed before the need for dialysis.
• Live donor kidneys last longer than deceased organs. This is because the organs can be transplanted immediately and are cut off from a blood supply for less time. Live donor kidneys transplanted today will function for an average of 20 years.
• The surgery can be scheduled for the optimal health of the recipient and the donor and at their convenience. Because the surgery can be planned ahead, rather than performed as an emergency procedure when an organ becomes available, it is less stressful for the donor, the recipient, and the transplant team.
• The live kidney donor operation is safe for the accepted donor after thorough donor evaluation.
Source: UC Davis Transplant Centre and Wikipedia
Becoming a living donor offers many benefits. One of the most obvious is that you can save a life, or drastically improve the quality of life for the recipient. Another benefit is that potential donors get a thorough medical check-up prior to becoming a donor, which can sometimes save the life of the donor when a serious unknown condition is discovered.
Long-term survival is improved among patients who receive a living donor kidney compared with patients who receive cadaver kidneys or who remain on dialysis. Some living kidney recipients and donors who were transplanted back in the '60s are still living a full life. Patients cannot survive on dialysis indefinitely. After 5 hours dialysis only filters 6% of the blood. After six years on dialysis, other major organs are likely to start to fail.
Dialysis information Source: Giveakidney.org
When a recipient has a living donor, the wait time for transplant is shorter and the transplant can be scheduled. This allows for donations to take place when the recipient is in good mental and physical health and when it is convenient for both the donor and the recipient. No middle of the night surprises having to rush to the hospital for emergency transplant surgery!
Live organs begin to function more quickly than cadaveric donations. This helps ease the process for the recipient, and frees up a cadaveric kidney for another recipient.
Source: Johns Hopkins Medicine and GiveaKidney.org
Today, 46% of all organ donors in the UK are living donors.
Only one donor per 11,000 population
If one in every 11,000 people in the UK became a living kidney donor, no one would need to wait for a kidney! I think that is both possible and ethical to achieve. In fact, it is a much easier way to deal with the shortage of kidneys than overcoming the problems associated with the lack of kidneys from deceased donors.
While three people die each day on the organ transplant waiting list in the UK, most people have little understanding about the facts of organ donation and the possibility they could donate an organ while they are alive.
Statistics Source: latest statistics, NHSBT
The number of altruistic donors in the UK has risen each year since the UK’s first altruistic donation in 2007 up until 2014, probably due to the publicity of such donations and increased public awareness. (Statistics for the full year 2014/2015 are not published at the time of writing.)
Source: Giveakidney.org
The Times – 20/8/2014
Large rise in people giving kidney to strangers
Rising numbers of people are choosing to give away a kidney to help a stranger, with a 55 per cent jump
in such altruistic donations in the last year.
In the year to April, 118 people had an operation to give an organ to someone they didn’t know while still
alive, compared to 76 the year before and 34 in 2011-12. In 2007, the year after such donations became
legal, only six people went through with the procedure.
Economic savings of living kidney donation
Cost of maintenance of dialysis per patient per year =£30,000 (5 years=£150,000)
Cost of transplantation, including relevant recipient
and donor costs per year =£11,000 (5 years=£55,000)
Saving over 5 years £150,000 - £55,000
=£95,000 per donation
Source: NHS costs published October 2010, Giveakidney.org
Risks of living kidney donation
The long-term risks of living with a single kidney were 'pretty negligible,' said NHS Blood and Transplant.
Source: The Times – 20/8/2014 Large Rise in People Giving Kidney to Strangers
Donor nephrectomy (kidney donation) has minimal adverse effects on overall health status.
source: Conclusions from Long-term follow up of living kidney donors – a longitudinal study. Mansoura University, 13 April, 2007.
An ethical comparison with the Armed Forces
The mortality rate from living kidney donation is three times less than the mortality rate was for members of the UK armed forces in 2009 (one death per 3,000 compared to one death per 1000). The mortality rate of donating a portion of your liver is about the same as if you were a member of the British armed forces in 2009 (one death per 1000). The risk of serious injury from donating a portion of your liver is about the same as the risk of serious injury being a member of the armed forces in 2009.
Statistics Sources: GiveaKidney.org and Uk Regular Armed Forces, Deaths by Service, Table 1 page 5. Defence Statistics, MOD, March 2014.
Do medical ethics advisers and other authorities discourage people from joining the armed forces for the same reasons as they are so cautious about the risks of people doing harm to their body when offering to donate an organ to save someone’s life? Risks need to be weighed up with the potential outcome for taking or not taking the risk. Military chaplains are usually in the habit of convincing members of the forces that it is spiritually right and heroic for them to risk their lives and to be prepared to kill other human beings for the military cause. On top of that, soldiers could be said to be coerced by being forced to follow orders and are paid for taking such risks, something medical ethicists are so concerned about not doing with living organ donation.
Source: Giveakidney.org
Christian Ethics
What the Catholic Church officially advises about the ethics of living organ donation:
It has even been suggested that unrelated living donors, known as ‘altruistic’ organ donors, be accepted.
Such generous donations are only to be welcomed, provided that they are offered freely in an informed and disinterested manner. It is essential to ensure that such generosity does not mask a system of organ trafficking based on exploiting the destitute.
Source: Commission of the Bishops’ Conferences of the European Community (COMECE) Ethical Aspects of Organ Donation (11 October 2007)
Just as the Christian life involves a willingness to suffer for the sake of others, and to risk life and health in the service of others, so undergoing the risk of surgery for the sake of someone in need is a profoundly Christ-like act.
Though kidney transplantation is well established, there are other areas of live-donor transplantation that raise some difficult questions in relation to the level of risk for the donor. It is now possible to transplant a lobe of a liver or a lobe of lung. However, partial liver procurement has a significant mortality rate for the donor. The mortality rate for lung lobe procurement is not well established, but is also thought to be significant.*
*(see author’s comments of disagreement here about the published facts of the mortality rate of both living lung donation and living liver donation in the next section, Living Donation is the Solution, part 2).
The traditional Catholic understanding is thus that it is acceptable to take reasonable risks with one’s health, but not to ask a doctor seriously to harm the functional integrity of the body. This raises two questions: what constitutes reasonable risk? And what constitutes serious harm to functional integrity? For example, partial liver and lung lobe transplants both involve significant risk to the life of the donor. Lung lobe donation does involve some loss of function. Arguably, a small degree of diminishment of function is not equivalent to harm to functional integrity – but what degree would be equivalent?
Furthermore, as donation is archetypally an act of charity, so it is that the Holy Spirit may be calling a particular person to become a donor, and if the person recognises this, then it becomes a duty in charity for him or for her to consider doing so. In this sense donation may be a duty and unwillingness to donate may be a failure of duty. However, this is precisely in relation to the calling that each person has, and the degree to which we have each discerned it. It is not for others to decide…
“…live donation from an unrelated donor, this in fact represents the purist form of donation, understood as an act of generosity. Furthermore … the existence of a close relationship provides no guarantee that payment and/or pressure have not occurred.
It is right therefore that people who hear the call to do so are enabled to act as altruistic donors, at the same time as safeguards are maintained, such as psychiatric assessment by an independent doctor and anonymity of both parties.
Source: On the Ethics of Organ Transplantation: A Catholic Perspective, The Anscombe Bioethics Centre, 8th April 2014.
Some Christian scriptures that can apply to living organ donation:
Matthew 7:12 “So whatever you wish that others would do to you, do also to them, for this is the Law and the Prophets.”
John 15:13 "Greater love has no one than this, that one lay down his life for his friends.”
1 John 3:16-17 “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters. If anyone has material possessions and sees a brother or sister in need but has no pity on them, how can the love of God be in that person?”
Living Donation is the Solution part 2