DONOR PERSPECTIVE
NON-DIRECTED ALTRUISTIC KIDNEY DONATION: A DONOR PERSPECTIVE Paul van den Bosch Woking, Surrey, UK
INTRODUCTION
PERSONAL EXPERIENCE
Ever since the first kidney donation between identical twins in 1954, the majority of living donors have been related to their recipients. More recently there have been people who have an interest in donating to someone they do not know (called altruistic donation). A formal process for those who wished to be a living donor but had no particular recipient in mind was put in place in the UK by NHS Blood and Transplant in 2006, and followed the UK Guidelines for Living Kidney Donor Transplantation (formally known as British Transplantation Society) (2011).
ASSESSMENT I donated a kidney to someone whom I did not know in 2008. As a General Practitioner (GP) I am aware of the burden of kidney disease and my decision to donate stretches back a long way to my first medical job as a junior doctor on a renal ward in 1979. I also knew that a friend of my parents had made a very successful donation to his son and recall a poster of him playing tennis, which was being used to advertise the benefits of transplantation 30 years ago. But perhaps the most important trigger was seeing a patient who enthused about the transformation of his life as a result of a transplant.
The expectation was that the numbers would be small; however, interest and activity have been much higher than anticipated with 76 donations in the period from April 2012 to March 2013 and the most recent data show that more that 50 took place between April and September 2013. I believe that there is potential for this form of donation to make a substantial and increasing contribution to the proportion of kidneys available for transplant. The term non-directed altruistic donation is often abbreviated to altruistic donation and, in other countries, may be called unspecified or ‘Samaritan’ donation. Altruistic donation has a particular value where someone in need of a transplant has a relative or friend who is willing to be their living donor, but is incompatible. The altruistic donor may then provide a kidney while the relative or friend donates to another person on the transplant waiting list. In this way altruistic donors may facilitate a pair of donations. The process can sometimes be extended to create a chain. Figure 1 shows the number of shared living donor kidney transplants in the UK in 2012/2013. Some but not all of the paired donations in Figure 1 were linked to an altruistic donor.
BIODATA Dr Paul van den Bosch is a general practitioner working at a family practice near Woking in the South of England. He is a trustee for Give A Kidney which is a charity aimed at increasing awareness of non-directed donation.
96
Journal of Renal Care 2014
As a result, I contacted my most convenient transplant unit and embarked on six months of assessment. I was fortunate to find a very understanding and tolerant co-ordinator who listened carefully to my point of view but was also very clear about what needed to be done. I grumbled about some of the investigations and, in particular, the psychiatric evaluation but accepted it after my co-ordinator convinced me of the necessity. SURGERY Having made the decision to go ahead my main anxiety was that I would be found unfit to donate, with a secondary concern about the time I was going to need away from work. I felt very little apprehension about the operation itself. My family, and in particular my wife, were very supportive once we had discussed the issue and they understood how committed I was. I left hospital two days after surgery, although it was more uncomfortable than I had anticipated for the first week. However, I made a rapid recovery and was back at my desk working full-time just over two weeks later. I think the main reasons for this swift return to work were the high quality of surgery and care I received, as well as my general fitness and my self-employment. It would certainly have taken longer if I had a more physical job. I was rather more tired than usual for a short time but felt fully back to normal by my post-operative checkup after six weeks and was able to enjoy an energetic cycling holiday four months later. POST SURGICAL RECOVERY I have continued to remain healthy and active. My brief routine annual checkups have all shown stable blood pressure and renal function. I have speculated as to how I might have coped had there been complications but I had been clearly and repeatedly advised about the risks and even if I had had problems, I would have had no regrets.
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
NON-DIRECTED ALTRUISTIC KIDNEY DONATION
Figure 1: Shared living donor kidney transplants in the UK 2012–2013.
Data courtesy of NHSBT.
ESTABLISHMENT OF ‘GIVE A KIDNEY’ CHARITY
BARRIERS TO DONATION
One needs to be cautious in generalising from individual experience, but I believed that there had to be others who shared my feelings about altruistic donation and I was happy to accept media opportunities to let people know what was involved. Most importantly, in 2010, two other donors, one a medical journalist and the other a retired consultant physician, began the process of setting up a charity that became Give A Kidney www.giveakidney.org.
A UK survey commissioned by Give A Kidney in 2011 indicated that 8% of adults would consider making a live kidney donation to a stranger and other surveys in the UK and US have shown similar results. While initial interest will inevitably decline as the reality approaches, there are some barriers, which may be readily overcome. The first of these is simply awareness of the potential value of a transplant and the possibility of donating anonymously.
This is a group of donors and professionals involved in transplantation that was established to raise awareness of non-directed donation and to support those interested in taking it further. While many donors wish to avoid publicity, Give A Kidney has deliberately sought media exposure as a means to help the largest possible number of people know of the possibilities of donation. Another of the main tasks has been the development of a website that provides information and stories of individual experiences as donors and recipients. I have become an active member and have been responsible for monitoring and responding to email queries from people who have seen the website and also putting them in touch with previous donors. We have also tried to make ourselves known to transplant units so that they can use us as a resource to help potential donors.
Secondly there is a requirement for information about the level of risk and disruption to normal life to be expected in the process of assessment, operation and recovery. Our survey also showed that there are many misconceptions about the long-term consequences. The risks may sometimes be of more concern to family and friends that they are to the donors themselves. The mortality risk is often quoted to be around 1 in 3,000 which needs to be compared with the annual all-cause mortality of a 53-year-old (my age at the time of the operation) which is 1 in 250 (Office for National Statistics data), so the chance of death in the year of operation is 12 times more likely to be the result of something unrelated to surgery. Furthermore, a study of 2,509 nephrectomies carried out between 2000 and 2006 in the UK showed that there had only been one death, which was caused by a myocardial infarction three months after surgery (Hadjianastassiou et al. 2007). Long-term survival is significantly
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
Journal of Renal Care 2014
97
van den Bosch
better than average with long-term studies from Sweden showing 85% of donors alive at 20 years versus expected survival of 66% (Fehrman-Ekholm et al. 1997). Thirdly there is the anxiety many people feel in a medical environment, which they may only have previously encountered in the context of illness or death. I think it is of significance that a high proportion of non-directed donors have a medical background. The first two were nurses. It seems likely that those with experience of a hospital are going to be more at ease there. Other barriers include the time and cost. These will vary considerably depending on the view taken by employers, but given the huge benefit to recipients and the savings to the health service, there should be measures to minimise the difficulties. It is only recently that a relatively straightforward and nationally consistent system has been put in place to reimburse donors.
reported by controls in the general population (Ku 2005). Furthermore, the vast majority of donors would again donate their kidney if they could, even in cases in which the transplant had failed (Ingelfinger 2005). However even if it later emerges there are some negative consequences, these would be far outweighed by the positive satisfaction of having done something that is unequivocally useful.
BENEFITS FOR SOCIETY Beyond the individuals involved there is a further consideration. Richard Titmuss, in his classic work on blood donation ‘The Gift Relationship’ published in 1970, emphasised that altruism serves a critical role in the provision of care and universal welfare which underpin the Health Service and which cannot be provided by a competitive, materialistic and acquisitive society. Legislation to oblige us to be more compassionate is unlikely to be as effective.
CONCLUSION While no two individuals have identical motivations, one consistent theme is that it seems a normal or natural thing to do. Donors are generally happy in the knowledge that they are doing something generous and valuable but are not keen to be seen as heroic. The embarrassment of being perceived as peculiar may be a significant deterrent and part of our role at Give A Kidney is to demonstrate that there is a well-defined pathway which quite ordinary people have travelled and that they end their journey feeling healthy and positive about the experience.
BENEFITS FOR DONORS While the immediate benefits of donation are for the recipient, in common with most donors, I think that I too have gained immeasurably. Most donors have feelings of increased selfesteem and lower scores for depression than in normal controls. A review of 11 studies in eight countries reported that the quality of life of donors was usually superior and never inferior to that
Altruistic donation is approved and takes place in many developed countries and a brief search reveals considerable interest in altruistic donation from both academics and the general media. However, the numbers taking place in the UK now are unprecedented. Whether the number of donors continues to climb or whether the pool is shortly going to run dry is of course unknown. With an effective and well-defined pathway established and increasing awareness of the possibility amongst the whole community, it is not unreasonable to dream about achieving Give A Kidney’s goal which is the disappearance of the long and uncertain waits of those needing renal transplantation.
CONFLICT OF INTEREST No conflict of interest has been declared by the author(s).
AUTHOR CONTRIBUTIONS PB is the sole author.
REFERENCES British Transplant Society. (2011). UK Guidelines for Living Donor Kidney Transplantation, 3rd edn. The British Transplantation Society. www.bts.org.uk. Fehrman-Ekholm I., Elinder C.G., Stenbeck M. et al. (1997). Kidney donors live longer. Transplantation 64(7), 976–978. Hadjianastassiou V.G., Johnson R.J., Rudge C.J. et al. (2007). 2509 Living donor nephrectomies, morbidity and mortality. American Journal of Transplantation 7(11), 2532–2537.
98
Journal of Renal Care 2014
Ingelfinger J.R. (2005). Risks and benefits to the living donor. The New England Journal of Medicine 353, 447–449. Ku J.H. (2005). Health related quality of life of living kidney donors. Transplant International 18(12), 1309–1317. Titmuss R. (1970). The Gift Relationship: from human blood to social policy. New York: Pantheon.
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
NON-DIRECTED ALTRUISTIC KIDNEY DONATION: A DONOR PERSPECTIVE Paul van den Bosch Woking, Surrey, UK
INTRODUCTION
PERSONAL EXPERIENCE
Ever since the first kidney donation between identical twins in 1954, the majority of living donors have been related to their recipients. More recently there have been people who have an interest in donating to someone they do not know (called altruistic donation). A formal process for those who wished to be a living donor but had no particular recipient in mind was put in place in the UK by NHS Blood and Transplant in 2006, and followed the UK Guidelines for Living Kidney Donor Transplantation (formally known as British Transplantation Society) (2011).
ASSESSMENT I donated a kidney to someone whom I did not know in 2008. As a General Practitioner (GP) I am aware of the burden of kidney disease and my decision to donate stretches back a long way to my first medical job as a junior doctor on a renal ward in 1979. I also knew that a friend of my parents had made a very successful donation to his son and recall a poster of him playing tennis, which was being used to advertise the benefits of transplantation 30 years ago. But perhaps the most important trigger was seeing a patient who enthused about the transformation of his life as a result of a transplant.
The expectation was that the numbers would be small; however, interest and activity have been much higher than anticipated with 76 donations in the period from April 2012 to March 2013 and the most recent data show that more that 50 took place between April and September 2013. I believe that there is potential for this form of donation to make a substantial and increasing contribution to the proportion of kidneys available for transplant. The term non-directed altruistic donation is often abbreviated to altruistic donation and, in other countries, may be called unspecified or ‘Samaritan’ donation. Altruistic donation has a particular value where someone in need of a transplant has a relative or friend who is willing to be their living donor, but is incompatible. The altruistic donor may then provide a kidney while the relative or friend donates to another person on the transplant waiting list. In this way altruistic donors may facilitate a pair of donations. The process can sometimes be extended to create a chain. Figure 1 shows the number of shared living donor kidney transplants in the UK in 2012/2013. Some but not all of the paired donations in Figure 1 were linked to an altruistic donor.
BIODATA Dr Paul van den Bosch is a general practitioner working at a family practice near Woking in the South of England. He is a trustee for Give A Kidney which is a charity aimed at increasing awareness of non-directed donation.
96
Journal of Renal Care 2014
As a result, I contacted my most convenient transplant unit and embarked on six months of assessment. I was fortunate to find a very understanding and tolerant co-ordinator who listened carefully to my point of view but was also very clear about what needed to be done. I grumbled about some of the investigations and, in particular, the psychiatric evaluation but accepted it after my co-ordinator convinced me of the necessity. SURGERY Having made the decision to go ahead my main anxiety was that I would be found unfit to donate, with a secondary concern about the time I was going to need away from work. I felt very little apprehension about the operation itself. My family, and in particular my wife, were very supportive once we had discussed the issue and they understood how committed I was. I left hospital two days after surgery, although it was more uncomfortable than I had anticipated for the first week. However, I made a rapid recovery and was back at my desk working full-time just over two weeks later. I think the main reasons for this swift return to work were the high quality of surgery and care I received, as well as my general fitness and my self-employment. It would certainly have taken longer if I had a more physical job. I was rather more tired than usual for a short time but felt fully back to normal by my post-operative checkup after six weeks and was able to enjoy an energetic cycling holiday four months later. POST SURGICAL RECOVERY I have continued to remain healthy and active. My brief routine annual checkups have all shown stable blood pressure and renal function. I have speculated as to how I might have coped had there been complications but I had been clearly and repeatedly advised about the risks and even if I had had problems, I would have had no regrets.
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
NON-DIRECTED ALTRUISTIC KIDNEY DONATION
Figure 1: Shared living donor kidney transplants in the UK 2012–2013.
Data courtesy of NHSBT.
ESTABLISHMENT OF ‘GIVE A KIDNEY’ CHARITY
BARRIERS TO DONATION
One needs to be cautious in generalising from individual experience, but I believed that there had to be others who shared my feelings about altruistic donation and I was happy to accept media opportunities to let people know what was involved. Most importantly, in 2010, two other donors, one a medical journalist and the other a retired consultant physician, began the process of setting up a charity that became Give A Kidney www.giveakidney.org.
A UK survey commissioned by Give A Kidney in 2011 indicated that 8% of adults would consider making a live kidney donation to a stranger and other surveys in the UK and US have shown similar results. While initial interest will inevitably decline as the reality approaches, there are some barriers, which may be readily overcome. The first of these is simply awareness of the potential value of a transplant and the possibility of donating anonymously.
This is a group of donors and professionals involved in transplantation that was established to raise awareness of non-directed donation and to support those interested in taking it further. While many donors wish to avoid publicity, Give A Kidney has deliberately sought media exposure as a means to help the largest possible number of people know of the possibilities of donation. Another of the main tasks has been the development of a website that provides information and stories of individual experiences as donors and recipients. I have become an active member and have been responsible for monitoring and responding to email queries from people who have seen the website and also putting them in touch with previous donors. We have also tried to make ourselves known to transplant units so that they can use us as a resource to help potential donors.
Secondly there is a requirement for information about the level of risk and disruption to normal life to be expected in the process of assessment, operation and recovery. Our survey also showed that there are many misconceptions about the long-term consequences. The risks may sometimes be of more concern to family and friends that they are to the donors themselves. The mortality risk is often quoted to be around 1 in 3,000 which needs to be compared with the annual all-cause mortality of a 53-year-old (my age at the time of the operation) which is 1 in 250 (Office for National Statistics data), so the chance of death in the year of operation is 12 times more likely to be the result of something unrelated to surgery. Furthermore, a study of 2,509 nephrectomies carried out between 2000 and 2006 in the UK showed that there had only been one death, which was caused by a myocardial infarction three months after surgery (Hadjianastassiou et al. 2007). Long-term survival is significantly
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
Journal of Renal Care 2014
97
van den Bosch
better than average with long-term studies from Sweden showing 85% of donors alive at 20 years versus expected survival of 66% (Fehrman-Ekholm et al. 1997). Thirdly there is the anxiety many people feel in a medical environment, which they may only have previously encountered in the context of illness or death. I think it is of significance that a high proportion of non-directed donors have a medical background. The first two were nurses. It seems likely that those with experience of a hospital are going to be more at ease there. Other barriers include the time and cost. These will vary considerably depending on the view taken by employers, but given the huge benefit to recipients and the savings to the health service, there should be measures to minimise the difficulties. It is only recently that a relatively straightforward and nationally consistent system has been put in place to reimburse donors.
reported by controls in the general population (Ku 2005). Furthermore, the vast majority of donors would again donate their kidney if they could, even in cases in which the transplant had failed (Ingelfinger 2005). However even if it later emerges there are some negative consequences, these would be far outweighed by the positive satisfaction of having done something that is unequivocally useful.
BENEFITS FOR SOCIETY Beyond the individuals involved there is a further consideration. Richard Titmuss, in his classic work on blood donation ‘The Gift Relationship’ published in 1970, emphasised that altruism serves a critical role in the provision of care and universal welfare which underpin the Health Service and which cannot be provided by a competitive, materialistic and acquisitive society. Legislation to oblige us to be more compassionate is unlikely to be as effective.
CONCLUSION While no two individuals have identical motivations, one consistent theme is that it seems a normal or natural thing to do. Donors are generally happy in the knowledge that they are doing something generous and valuable but are not keen to be seen as heroic. The embarrassment of being perceived as peculiar may be a significant deterrent and part of our role at Give A Kidney is to demonstrate that there is a well-defined pathway which quite ordinary people have travelled and that they end their journey feeling healthy and positive about the experience.
BENEFITS FOR DONORS While the immediate benefits of donation are for the recipient, in common with most donors, I think that I too have gained immeasurably. Most donors have feelings of increased selfesteem and lower scores for depression than in normal controls. A review of 11 studies in eight countries reported that the quality of life of donors was usually superior and never inferior to that
Altruistic donation is approved and takes place in many developed countries and a brief search reveals considerable interest in altruistic donation from both academics and the general media. However, the numbers taking place in the UK now are unprecedented. Whether the number of donors continues to climb or whether the pool is shortly going to run dry is of course unknown. With an effective and well-defined pathway established and increasing awareness of the possibility amongst the whole community, it is not unreasonable to dream about achieving Give A Kidney’s goal which is the disappearance of the long and uncertain waits of those needing renal transplantation.
CONFLICT OF INTEREST No conflict of interest has been declared by the author(s).
AUTHOR CONTRIBUTIONS PB is the sole author.
REFERENCES British Transplant Society. (2011). UK Guidelines for Living Donor Kidney Transplantation, 3rd edn. The British Transplantation Society. www.bts.org.uk. Fehrman-Ekholm I., Elinder C.G., Stenbeck M. et al. (1997). Kidney donors live longer. Transplantation 64(7), 976–978. Hadjianastassiou V.G., Johnson R.J., Rudge C.J. et al. (2007). 2509 Living donor nephrectomies, morbidity and mortality. American Journal of Transplantation 7(11), 2532–2537.
98
Journal of Renal Care 2014
Ingelfinger J.R. (2005). Risks and benefits to the living donor. The New England Journal of Medicine 353, 447–449. Ku J.H. (2005). Health related quality of life of living kidney donors. Transplant International 18(12), 1309–1317. Titmuss R. (1970). The Gift Relationship: from human blood to social policy. New York: Pantheon.
© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association
