Osaru - Organ Donation Awareness Proceedings


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BEM Organ Donation Awareness workshop was devoted to addressing the problem of low rate of organ donation among the Black Africa, Caribbean and Asian groups in Essex and to raise awareness of issues pertaining to clinical, cultural and religious values among the BEM and the mainstream communities. The workshop determined whether issues of cultural, economic, social and religious values differences have impacted or influence on organ donation sign-up rate among the BEM community.

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Osaru - Organ Donation Awareness Proceedings

  1. 1. EBEMRC Essex Black & Ethnic Minority ResearchCentre BEM ORGAN DONATION AWARENESS WORKSHOP PROCEEDINGS By Osarumwense Iguisi, PhD 166 Knights Way, Brentwood-Essex, CM13 2ER, UK T: +44 (0)1277 229122 M: +44 (0)7981990263 Email: info@ebemrc.org.uk www.ebemrc.org.uk Charity Registration No. 1135332
  2. 2. EBEMRC Essex Black & Ethnic Minority Research Centre BEM BLOOD AND ORGAN DONATION AWARENESS WORKSHOP Held in Brentwood, Essex 25 September 2010Appreciation______________________________________________________BEM Organ Donation Awareness workshop was devoted to addressing the problem of lowrate of organ donation among the Black Africa, Caribbean and Asian groups in Essex and toraise awareness of issues pertaining to clinical, cultural and religious values among the BEMand the mainstream communities. The workshop determined whether issues of cultural,economic, social and religious values differences have impacted or influence on organdonation sign-up rate among the BEM community.This document is a compilation of summary record report of papers, which were presented atthe workshop. 2
  3. 3. The workshop LOC wishes to express their appreciation of the active participation in theorganisation of the workshop, of the Executive Committee and members of the workshopcommittee, Dr Valentine Ohakwe, Ms Winfred, Kwasi, Dr Evelyn Egbeokaruwa Ogbebor,Phil Rufus and the workshop volunteers for a job well done. On behalf of the seniormanagement and staff of EBEMRC, the workshop masters of ceremony, associates andcollaborators in Essex County and beyond, the Executive Director of EBEMRC DrOsarumwense Iguisi expressed his thanks to the sponsor of the workshop, the Big LotteryFund for the planning, funding and effective execution of the workshop. EBEMRCmanagement wish also to thank Anne Milton MP, Parliamentary Under Secretary of State forPublic Health for her encouraging moral support and suggestions for workshop humanresources, which were a great tower of strength for the workshop and Mike Le-Surf for hismoral support for the workshop.We wish to thank Pastor Peter Jordan for his active participation and granting permission touse his church, Sawyers Church Hall, and his frontline administrative team for their selflesscontribution to the success of the workshop.We are very grateful to the distinguished Masters of Ceremony Dr Emmanuel Okoro andBarrister Mrs Pat Ohakwe for their effective and constructive management of the paperpresentations and workshop activity sections. We are very grateful to the different speakers;Professor Gurch Randhawa, Director of Institute for Health Research of the University ofBedfordshire; Dr Stephen Ogbonmwan, a Consultant Gynaecologist from Manchester;Sharon Platt-McDonard, Director of Health Ministries/Disability Awareness, and BritishUnion Conference of Seventh-Day Adventists; Michelle Tyler, Team Manager NHS EasterOrgan Donation Services, Thomas Halley of Sawyers Church; Kala Mistry and Kirit Modiwho were all chosen on the basis of their qualifications, experience and track records ofachievements. We have used professionals, scholars and organ recipients as presenter anddiscussants to provide the compelling statistical, clinical, social, cultural and religious factsand perspectives about organ donation and transplant. The presentations and discussionsprovided some answers and awareness of the problems faced by the transplant communityand necessity for the black African, Caribbean and South Asian communities to be activelyinvolved in organ donation and transplant campaign to educate their communities in order tosign up the organ register to save more lives.We wish to place on record our sincere gratitude to all the workshop participants for theiractive and constructive contributions in making the workshop a success as well as toeveryone who helped in its organisation. This workshop should be a challenge andencouragement to all concerned BEM community members. We look forward to your givingmore support and greater participation to EBEMRC further organ donation awareness forumsand other projects in our quest to propagate activities that promote the socio-cultural,socioeconomic and healthcare needs and challenges of the BEM groups.Finally, we send our sincere gratitude to the Big Lottery Fund for the financial support givento the workshop. 3
  4. 4. SYNOPSIS OF WORKSHOP REPORTIntroductionThe BEM Organ Donation Awareness Workshop initiated and organized by Essex Black &Ethnic Minority Research Centre (EBEMRC) sponsored by the Big Lottery Fund was held onthe 25th September 2010 in Brentwood at the Sawyers Church Hall.The objective of the workshop was to bring together decision-makers, service providers,professionals and the different BEM individuals, groups and organisations who have sharedinterests in the healthcare needs and clinical, cultural and religious barriers faced by the BMEcommunities regarding organ donation. The workshop helped to dispel the cultural stigmaand superstition held by the different BEM communities to increase participation in organdonation sign-up. The workshop educates, raised consciousness and increase awareness oforgan failure and transplant among the black African, Caribbean and South Asian populationfrom the BEM community about the problem faced by renal failure patient and the necessityfor community to be actively involved in the campaign to save more lives and to sign up anddonate organ. The workshop informed the participants that organ transplant would besuccessful only if the donor came from the same ethnic group as the recipient so that therewas a better chance of a close match of tissue type and blood group between the donor organand organ recipient. 4
  5. 5. 65 participants responded to the invitation, which had been sent to them on behalf ofEBEMRC by the Chairman of the Workshop Organizing Committee. The participants wereboth from mainstream and BEM communities all over UK. The calibre of participants cutacross both the private and public voluntary organisations featuring medical doctors,healthcare practitioners and administrators, nurses, lawyers, religious and faith leaders,teachers and scholars from UK Universities and Institutions, 5
  6. 6. Welcome Address by the Executive Director of EBEMRCDr Osarumwense IguisiThe Sponsors of this workshop (The Big Lottery), EBEMRC, Ladies and gentlemen,It is with gratitude that I welcome you all to this very important workshop on BEM OrganDonation Awareness.As we are all aware, discussions about organ donation is a difficult and often taboo subject ofdiscourse within the BEM communities, with a host of misconceptions.My friend and colleague Mr Obi Francis Iroegbu developed renal failure five years ago. Hehas been one of the fortunate ones and had a life saving kidney transplant early this year2010. Having known Obi and witnessed the positive affect this organ transplant have had onhim and his family lives has been a huge influence on me and this therefore led to theconception and development of this project.At this moment in the UK there are more than 10,000 patients on the transplant waiting list.Of these patients, over 10% are of BEM people from black African, Caribbean and SouthAsian communities and are 3 times more likely to need transplant than the white population.Organ donation rates continue to be low among black African, Caribbean and South Asiangroups, leading to disproportionate numbers awaiting transplants, longer waiting times andproblems of tissue matchingChris Rudge of UK Transplant provides evidence that 23% of the people who are waiting fora kidney transplant are from black African, Caribbean and South Asian minority ethnicbackgrounds and only 3% of organ donors come from that background. 6
  7. 7. Professor Gurch Randhawa of the Institute for Health Research at the University ofBedfordshire, and a lead speaker in this workshop today, reported that 20% of people onwaiting lists in the UK for organ transplants were from ethnic minority communities.According to Randhawa, it was often the case that a transplant would be successful only ifthe donor came from the same ethnic group as the recipient so that there was a better chanceof a close match of tissue type and blood group between the donor organ and the recipient.It has been argued that the lower rates of organ donation and transplantation in the blackAfrican, Caribbean and South Asian populations are linked to this underrepresentation in thedonor pool.The need for sustained and continuous awareness avenues to reach the BEM communities ishighlighted by some of the following facts: • People from the BEM communities living in the UK are three times more likely to need a kidney transplant • There are currently 2,300 black African, Caribbean and South Asian members of the community who are in need of a transplant • But just 1.6 percent of people from the BEM community have joined the NHS Organ Donor Register. • A transplant is more likely to be successful if the donor and recipient are from the same ethnic groupThe facts from the above speak for themselves in making a compelling case for everyone tobecome aware of the problems and to make an inform decision to join the NHS Organ DonorRegister. Of particular importance is the urgent call to members of the black African,Caribbean and South Asian to take proactive action to join the organ donation register inorder to help save the lives of people who may otherwise die waiting for an organ transplant.I am happy to tell you that we have here today in the workshop Mrs Kala Mistry and Mr KiritModi, who are fortunate organ recipients and have come to share with us their experiencesand happy transplant stories.Creating awareness and promoting effective community engagement and participationforums for organ donation in a multicultural and multiethnic society represents one of themajor challenges facing the transplant community. Different communities cannot tackledonor shortage in a standardised way, given the different attitudes, perceptions, religious andcultural value concepts involved. Whatever the approach, there most be coordinated effort toclear or demystify the misperceptions about organ donation in the BEM communities. Betterawareness and understanding of the cultural and religious influences would be a means ofbuilding a strong support for transplantation and ensuring the success of organ donationcampaigns.As well as increasing awareness about organ donation, the workshop aims to challenge themisconceptions surrounding the issue through innovative use of community participation 7
  8. 8. forums that will visit the different ethnic minority groups in their various local meeting placesaround Essex in the coming months and years. These forums will support the decision-making process by providing the community with unique insight into the experiences ofdonor recipients’ and patients currently on the transplant waiting list as well as theopportunity to see the positive impact of donation from donor family perspective.Papers presented and discussed during the Workshop. • Michelle Tyler: Statistical Facts on Organ Donation • Professor Gurch Randhawa: Slideshow on ongoing Organ Donation and Transplant in BEM Communities • Kala Mistry: Life Testimony of an Organ Recipient • Dr Stephen E.O. Ogbonmwan: Organ Donation Awareness among the African and Ethnic Minority • Sharon Platt-McDonald: Faith and Facts: Balancing Perspectives and Achieving Engagement 8
  9. 9. • Thomas Halley: Religious Perspectives on Organ Donation• Kirit Modi: Life Testimony of an Organ recipient 9
  10. 10. Statistical Facts on Organ DonationMichelle TylerTeam Leader Eastern Organ Donation Services Team 10
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  19. 19. Slideshows on ongoing Organ Donation and Transplant in BEM Communities WorldwideProfessor Gurch Randhawa Presentation here 19
  20. 20. Organ Donor Recipient TestimonyKala MistryOrgan failure and transplantsKidney failure (also called renal failure) is a term used to describe when a persons kidneystops working properly, or fail. Renal failure can be divided into two categories: chronic renalfailure, and acute renal failure. • Pain and red colour are symptoms of a skin burn. • Vomiting and diarrhea are symptoms of cholera. • Pain in the chest and cyanosis (blue colour of skin) are symptoms of heat disease. • Headaches and nausea are symptoms of the flu.Dialysis can be used for people who have become sick and have lost the use of their kidneysfor a short time, or for people who no longer have working kidneys. The purpose of thekidney is to keep a balance of water and minerals in the body. These minerals includesodium, potassium, chloride, calcium, phosphorous, magnesium and sulphate. The kidneysalso take out hydrogen ions from the blood. Dialysis is able to remove these wastes from thebody and help keep the minerals in balanceTypes of dialysis – hemodialysis or peritoneal dialysis (PD)Since you don’t have to schedule dialysis sessions at a center, PD gives you more control.You can give yourself treatments at home, at work, or on trips. But this independence makes 20
  21. 21. it especially important that you work closely with your health care team: your nephrologist,dialysis nurse.TransplantsQuite simply, it’s about how you can save lives by donating parts of your body.Black people living in the UK are much more likely to need a kidney transplant than thegeneral population. This is because they are more likely to develop diabetes or high bloodpressure, both of which are major causes of kidney failure.My storyI started feeling unwell around 1995 and was having a range of tests. I was blood test forcreatinine. Higher levels of creatinine indicate a falling glomerular filtration rate gettingsuffering from headaches, tired easily, lethargic, heavy periods followed by depression andlack of appetite. I was prescribed various antibiotics paracetamol etc.It was in 1999 when, I went in for a minor operation and during routine checks that my highblood pressure was identified. I was sent for tests to find out the cause of the high bloodpressure. 21
  22. 22. My background history, family on both mother and father’s side were checked. There was nofamily history and I was told I had suffered Chronic Renal failure which was progressiveloss in renal function over a period of months or in my case years.Symptoms were: symptoms of a skin burn; Vomiting and diarrhea; Pain in the chest.Generally feeling unwell and tired, unable to sleep or eat with terrible foul taste in the mouth.I was guided through the different types of dialysis and chose peritoneal dialysis (PD). Iwanted control over my life and be able to lead a full life as much as possible.I was seriously ill on my 50 th birthday, and all I wanted was a party for my birthday but thiscould not happen. But my wonderful husband made sure it was a special day for me withgifts,Most important to be able to continue teaching which I worked hard to train and achievesuccess. I worked closely with my dialysis nurse so I could give myself treatments at home,at work, or on trips. I had a small dialysis machine at home that helped me to dialyseovernight and next day to teach as normal. I did have to ensure I had enough fluid and did notsuffer cramps after the dialysis. I learnt the different gargons of reasons for blood test forcreatinine. Higher levels of creatinine indicate a falling glomerular filtration rate (kidney notfunctioning well)My name was placed on the organ register three months after i had been dialysing and hadbeen well. I was told i would have to wait 18 months to 2 years for an organ. In reality I didnot know that the organs for like me who are Indians, Black and ethnic minority people werevery rare and waiting time was very long.My husband decided to go for tests when he saw there were times when I was struggling withdialysis and losing my resolve to be independent.One day I was off work not feeling 100% and decided to take time off to rest. I was restingwhen I had the phone call. The caller told me that an organ was available for transplant andwould I be willing to accept it? I had to ask her to repeat twice before i understood what wasbeing said. If so, I would need to make my way to royal London. I called my husband at work andthrough his employer explained what was going to happen. Called my sons and informedthem that I was going for transplant.When I reached London Barts they asked again tested for blood for me, my husband and thenthe waiting started. They told me the kidney was 99% match and so would work very well.The transplant took place during the night and took 3-4 hours.Next day I was very drowsy but awake and doctors told me it was success. Blood tests donedaily, medication – feeling nausea, vomiting, taking large tablets. Not being able to eat ordrink.Took 5-6 days when i started feeling better. Then i had to find out about the names ofmedicine and when to have them. 22
  23. 23. Changed one medicine cyclosporine from tablets to liquid. I was told by another patient totake with juice stops being sick. The liquid is very expensive and only prescribed as a lastresort.I did suffer infection had to stay in hospital for further 6 weeks to get better. Then the followup of visits three times a week for blood tests, urine tests and seeing the doctors.It took 3-6 months for me to get better and fully recovered and back at work.Now I do have to look after myself. I have a new goal and that is to help others understandwhat this is. Encourage families to support the person suffering, become blood donors andlive organ donors and give a gift for life. I keep fit and healthy as much as possible, take partin Transplant Games UK and meet other organ donors and share ideas.My regime: regular medication, regular healthy eating, keeping fit physically and mentallyand listening to my doctors and following their instructions.I could not have achieved this without the help, support and encouragement from myhusband, my children and my friends and family. 23
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  25. 25. ORGAN DONATION AWARENESS FOR AFRICANS & ETHNIC MINORITIESDr Stephen E.O. Ogbonmwan, MBBS, M.MED, FMCOG, FRCOG.IntroductionI am honoured to be invited to deliver this very important paper on this very important healthissue of organ donation and transplantation especially amongst Africans and other ethnicminority in the United Kingdom. Although I do not work with organ donation I support goodhealth, longevity and high quality of life. What I am going to say today affects all Africanswhere ever they may live on the globe and in fact all of mankind. This is a story of love andsupport for each other.You must forgive me as I am going to use the word African rather than the word Black orBlack African as advertised because I do not believe in colour coding of any race.There is no doubt there is increased need for organ donation and transplantation in the worldtoday due to sophistication of science and medical treatment. To use stem cell for everydaytreatment of diseased organs will take many more decades so organ donation andtransplantations will continue to hold the pride of place for a long time.Organ transplantation is the surgical removal of a tissue or organ from one individual (deador alive) and the placement of that organ in another individual for the purpose of improvingthe health of the recipient. Most transplant programme depends on either cadaveric or livingorgan donation. There is scarcity of human organs for transplantation so many patients faceimminent death or long suffering. 25
  26. 26. Organ donation and transplantation creates a culture of life and love. Many religious andsecular approaches justify organ donation and transplantation because it promotes life. TheCatholic Church for example favours it, especially in the encyclical Evangelium Vitae, whichstates that ‘organ donation is an act of the virtue of charity’. My speech will dwell on thepromotion of organ donation and transplantation. We shall look at the scale of the problemamongst Africans, religious, social, cultural, legal and ethical aspects of organ donation andinform on how Nigerians especially the Benin (Edo speaking people) of Southern Nigeriabelieve, and the final section is on the promotion of organ donation and transplantation.Scale of the Problems10,000 people in UK are in need of organ transplant to save or enhance their lives. Organdonation rates are relatively low amongst Africans and African-Caribbean’s.The African is 3 times more likely to need a kidney transplant than the Caucasianspopulation.A total of 23% of the people who are waiting for an organ transplant are Africans & Afro-Caribbean and South Asian ethnic minority groups.Only 3% of organ donors come from African background. The huge disparity between needand organ donation is very apparent.Africans do badly in all health Indices. • Mothers of African ethnic origin are 2.3 times more likely to have a stillbirth at parturition. • They are 2.3 times more likely to have a neonatal death than mothers of Caucasian origin. • Research has shown that non-Caucasians women are one and half times more at risk of experiencing severe pregnancy-related complications than Caucasian women. • This risk doubles for African women especially African-Caribbean women. • The overall estimated risk of severe complications is 89 cases per 100,000 maternities in the UK. • For Caucasian women this risk is around 80 cases per 100,000 maternities. It is 126 cases for non-Caucasian women as a whole, • But it is 188 cases of severe complication per 100,000 maternities for African women. • Worse still it is 196/100,000 maternities for African Caribbean women.You can see that the African do badly in all health indices which is a cause for seriousconcern and should be a cause for serious concern in the African community.The way forward is Education, education and education, interaction, change of attitude andparticipation.The History of Organ Transplant Scientists have long thought about the idea of replacing a diseased organ with a healthy onefrom a donor. The problem at first was that the human body is not particularly receptive toforeign tissue. The immune system is like an army, constantly on guard against any invasionof bacteria viruses or other potentially dangerous substances. When tissue from a donor isplaced inside the body of a recipient, this immune army sees it as a foreign invader and goesinto battle mode. White blood cells attack and destroy the unknown tissue in a process knownas rejection. 26
  27. 27. Scientists subsequently realized that the problem of rejection didnt occur when the organdonor and recipient were identical twins. The genetic similarity appeared to prevent theimmune response. Massachusetts surgeon Joseph E. Murray used this concept to hisadvantage in 1954, when he accomplished the first successful kidney transplant betweenidentical twins at Brigham and Womens Hospital in Boston USA.Dr. Murrays surgery was a major breakthrough, but it wasnt a solution. After all, very fewpeople have an identical twin they can rely on for organ transplantation. In the late 1960s,doctors figured out a way to perform transplants between non relatives by suppressing therecipients immune response with drugs like cyclosporine. The trouble was that the drugsthemselves were highly toxic. Due to the risks of infection and those of theimmunosuppressant drugs, most transplant patients didnt live long after their operation.By the 1980s, anti-rejection drugs had improved to the point where transplantation surgerybecame pretty routine and far less risky than it had been a few decades earlier. Survival ratesrose. Once surgeons had streamlined the process of transplanting essential organs like hearts,kidneys, liver and lungs -- they turned their focus to "nonessential" parts of the body. In thelate 1990s, surgeons in Lyon , France and New Zealand performed the first successful handtransplants. The next step was to attempt a face transplant.Religious aspects of Organ Transplant:All the major religions of the UK support the principles of organ donation andtransplantation. However, within each religion there are different schools of thought, whichmean that views may differ. All the major religions accept that organ donation is anindividual choice.The following information comes from the NHS leaflet which offers a brief guide to religiousviewpoints regarding organ donation. If you have any doubts, you should discuss them withyour spiritual or religious leader.Buddhism & Organ Donation:There are no injunctions in Buddhism for or against organ donation.The needs and wishes of the dying person must not be compromised by the wish to save alife. Each decision will depend on individual circumstances.Central to Buddhism is a wish to relieve suffering and there may be circumstances whereorgan donation may be seen as an act of generosity. Where it is truly the wish of the dyingperson, it would be seen in that light.If there is doubt as to the teachings within the particular tradition to which a person belongs,expert guidance should be sought from a senior teacher within the tradition concerned.When he discovered a monk sick and uncared for, the Buddha said to the other monks,"Whoever would care for me, let him care for those who are sick". 27
  28. 28. Christianity & Organ DonationThe Christian faith is based upon the revelation of God in the life of Jesus Christ. Throughouthis life Jesus taught people to love one another and he proved his love for the world upon thecross. It seems in keeping with this that Christians consider organ donation as a genuine actof love and a way of following Jesus’ example. This act of love then becomes part of aChristian discipleship or faith journey that is motivated by compassion to help someone elseand demonstrates a sense of social responsibility.Sacrifice and helping others are consistent themes in Christianity, which teaches the principleof seeking for others what you hope others would do for you. Enabling life to be lived asfully as possible is consistent with the teaching of the Son of God, Jesus Christ: “...freely youhave received, freely give” Matthew, chapter 10:8Christians should be encouraged to help others in need. Discussing organ donation withfamily and friends is a responsible and thoughtful act.Hindu & Organ DonationThere are many references that support the concept of organ donation in Hindu scriptures.Daan is the original word in Sanskrit for donation meaning selfless giving. In the list of theten Niyamas (virtuous acts) Daan comes third.Life after death is a strong belief of Hindus and is an ongoing process of rebirth. The law ofkarma decides which way the soul will go in the next life.Organ donation is an integral part of the Hindu way of life, as guided by the Vedas. Thatwhich sustains is accepted and promoted as Dharma (righteous living). Scientific treatisesform an important part of the Vedas – Sage Charaka deals with internal medicine while SageSushruta includes features of organ and limb transplants.“...it is said that the soul is invisible...knowing this you should not grieve for the body.”Bhagavad Gita, chapter 2:25Islam & Organ DonationIn 1996 the Muslim Law (Shariah) Council UK issued a fatwa (religious opinion) on organdonation. The council resolved that: • the council supports organ transplantation as a means of alleviating pain or saving life on the basis of the rules of the Shariah • Muslims may carry donor cards • the next of kin of a dead person, in the absence of a card or an expressed wish to donate their organs, may give permission to obtain organs from the body to save other people’s lives.The fatwa is based on the Islamic principle of necessities overrule prohibition. Normally,violating the human body, whether living or dead, is forbidden in Islam – but the Shariahbelieves this can be overruled when saving another person’s life.However there are also a significant number of Muslim scholars who believe that organdonation is not permissible and hold the view that this does not fall under the criteria of the 28
  29. 29. Islamic principle of necessities overrule prohibition due to other overriding Islamicprinciples.Both viewpoints take their evidence from the Qur’an and the Ahaadith and thereforeindividual Muslims should make a decision according to their understanding of the Shariah orseek advice from their local Imam or scholar.The Muslim Law Council UK fatwa draws on one of the basic aims of the Muslim faith:saving life.“Whosoever saves the life of one person it would be as if he saved the life of all mankind.”Holy Qur’an, chapter 5:32Judaism & Organ DonationIn principle, Judaism supports and encourages organ donation in order to save lives (pikuachnefesh).This principle can sometimes override the strong objections to any unnecessary interferencewith the body after death, and the requirement for immediate burial of the complete body.As all cases are different, Jewish law requires consultation with a competent Rabbinicauthority before consent is granted.For more information please contact the Office of the Chief Rabbi, or another competentHalachic authority.“One who saves a single life – it is as if he has saved an entire world.” Pirke D’Rav Eliezer,chapter 48Sikh & Organ DonationSikh philosophy and teachings place great emphasis on the importance of giving and puttingothers before oneself.It also stresses the importance of performing noble deeds and there are many examples ofselfless giving and sacrifice in Sikh teachings by the ten Gurus and other Sikhs.Sikhs believe life after death is a continuous cycle of rebirth but the physical body is notneeded in this cycle – a person’s soul is their real essence. “The dead sustain their bond withthe living through virtuous deed.”The transplantation of organs from living donors is morally permissible when such a donationwill not sacrifice or seriously impair any essential bodily function and the anticipated benefitto the recipient is proportionate to the harm done to the donor. Furthermore, the freedom ofprospective donor must be respected, and economic advantage should not accrue to the donor 29
  30. 30. No religion formally forbids donation or receipt of organs or is against transplantation fromliving or deceased donors. Only some orthodox Jews may have religious objections to“opting in.” However, transplantation from deceased donors may be discouraged by NativeAmericans, Roma Gypsies, Confucians, Shintoists, and some Orthodox rabbis.No religion formally obliges one to donate or refuse organsNo religion formally obliges one to consider cadaveric organs “a societal resource” orconsiders organ donation “a religious duty” (except some rabbis and isolated Muslim andChristian scholars)No religion has a formal position on “bonus points,” which is priority on the waiting list.Living organ donation is strongly encouraged only between Jesus Christians (15 of 28 JesusChristians worldwide have donated a kidney). No religion forbids this practice.No religion prefers cadaveric over living donation.No religion formally forbids non–heart-beating donors (nhbd) cadaveric donation or cross-over donation. Due to the sacred of human life, the Catholic Church is against donation fromanencephalic donors or after active euthanasia.No religion formally forbids xenotransplantation. Addressing the participants of the FirstInternational Congress of the Society for Organ Sharing in 1991, Pope John Paul II said“There are many questions of an ethical, legal and social nature which need to be moredeeply investigated. There are even shameful abuses which call for determined action on thepart of medical association and donor societies, and especially of competent legislativebodies” and later on “In effect, the human body is always a personal body, the body of aperson. The body cannot be treated as a merely physical or biological entity, nor can itsorgans and tissues ever be used as item for sale or exchange”.Addressing the participants at the XVIII International Congress of the TransplantationSociety in 2000, Pope John Paul II said “Accordingly, any procedure which tends tocommercialize human organs or to consider them as items of exchange or trade must beconsidered morally unacceptable, because to use the body as an object is to violate the dignityof the human person” and later on added “The criteria for assigning donated organs should inno way be discriminatory (i.e. based on age, sex, race, religion, social standing, etc.) orutilitarian (i.e. based on work capacity, social usefulness, etc.).” To conclude, according tothe Catechism of the Catholic Church Compendium signed by Pope Benedict XVI on June28, 2005, 476.Organ transplantation is morally acceptable with the consent of the donor and withoutexcessive risks for him/her. For the noble act of organ donation after death, the real death ofthe donor must be fully ascertained.Social and cultural aspects of organ donationIn Asian countries, it is more difficult to obtain cadaver kidneys for renal transplantationbecause of certain socio-cultural beliefs and customs. The issues affecting living related 30
  31. 31. kidney donation are more social than cultural. This is due to the web of family pressures andpersonal conflicts for both donor and recipient surrounding the donation. Importantmisconceptions and fears are: • fear of death, • the belief that removal of organ violates sanctity of decreased, • concern about being cut up after death, • desire to be buried whole, • dislike of idea of kidneys inside another person, • wrong concept of brain death, and • the idea of donation being against religious conviction.In Singapore, with the introduction of the Human Organ Transplant Act (HOTA) in 1988, thenumbers of cadaveric transplants have increased, including those from the Medical TherapyAct (MTA). HOTA and education have played pivotal roles in bringing about an increasedyield of cadaveric kidneys. With the availability of living unrelated donor (LUD) transplantsin India, our living related donor (LRD) transplant programme has suffered, because patientswould rather buy a kidney from overseas than get a relative to donate one. Patients are alsogoing to China for overseas cadaveric transplants where the kidneys come from executedconvicts. People in countries like Hong Kong, Japan and the Philippines share the same Asiantradition of not parting with their organs after death. Muslim countries like Malaysia requirethe deceased to have earlier pledged his kidneys for donation prior to death before they canbe harvested for transplantation at death.Benin (Edo Speaking) People of Southern NigeriaThe Benin or Edo speaking people of Southern Nigeria, see the body as sacred and not to bedismembered or violated. Liken that to the biblical teaching which says the body is thetemple of the Lord and should not be dishonoured by dismembering it at donation. The Beninpeople believe in reincarnation that the body is only a vehicle for the soul or human spirit.Hence they comfort the relatives of the deceased that the deceased is not dead but has onlytranscended this life as his/her soul has gone beyond human perception. ‘wa ghe vie bamwen no wu’ That transcended soul reincarnates 14 times to atone for perceived sins beforegoing into sublimation or eternity. It is believed that a dismembered part may be missing insubsequent reincarnation which how the people explain birth defects. These ancient andtraditional beliefs are gradually giving way to modern thinking that organ donation saves andprolong the lives of the recipient and as such should be encouraged. However the fear of theunknown keeps holding people back from doing the needful in organ donation.Medical Aspects of Organ Donation and TransplantationLiving organ donation has advantages from an immunological point of view because there isoften a large degree of similarity between the tissue types of the donor and the recipient. 1However, we cannot fully avoid the risks to donors and recipients.2Many of the studies report only minor risk to the donors, but earlier there was anxietyconcerning risks to the donors. Today one can find a much more positive attitude towards 31
  32. 32. living organ donation. It is noted that in the case of a living donor, mortality after surgery isextremely low. For instance, a survey of U. S. kidney transplants shows that there are only 5donor deaths in 19,368 live kidney transplants. 3 Patients who decide to undergotransplantation are subject to normal surgical risks. There are also complications of urologicaland vascular problems, especially with regard to kidney transplantation. 4 Besides,transplantation affects the recipient bodys structure. The main benefit to the recipient is thathe/she gets a new lease on life or even a better quality of life.Legal Aspects of Organ Donation and TransplantationDue to the illegal medical practice in transplantation, commercialization of human organs andso on, many countries formulated transplantation laws. The status of transplantation law canbe divided into three groups: opting-out, opting-in, and required request. • According to the opting-out system, every human being is considered a possible donor after death unless he/she has officially expressed a contrary option. It is also known as presumed consent. • By opting-in we mean a process by which people voluntarily sign and submit a will saying that they want to become donors once they are dead. If they do not do this, they will not be legally considered donors. • Required request law requires hospitals to ask the family of a deceased patient for a donation of organs and tissue if the deceased is a suitable candidate for organ donation.7Many countries have either enacted or are in the process of drafting legislation to control thearea of living donor transplantation. Although the general field of transplantation is still in astate of change and growth, the fundamental legal issues that must be confronted remainunchanged. There have been recent developments in legislation, especially giving priority tothe genuine consent of the donor. Although the majority of legislation has been written forcadaver organ donation, slowly, regulation is developing for living organ donation as well.The clauses of the laws are made on the basis of medical, ethical, religious, social andcultural considerations.In most countries, the law prohibits trade in human organs and address the donors right, theadequate supply of organs to the needy, the optimization of transplantation costs and thepromotion of transplantation procedures.Ethical Issues in Organ Donation and TransplantationThe practices of organ donation and transplantation raise many ethical questions. How canwe morally justify organ donation and transplantation? What are the ethical issues connectedwith the donor, with the recipient, and xenotransplantation?Catholic Church holds that the virtue of charity is the norm for the justification of thecadaveric and living organ donation and transplantation. Pius XII in his address toophthalmologists in 1956 argues that acts of donation cannot be viewed as a duty or asobligatory. Such acts are supererogatory and not obligatory. 32
  33. 33. Moreover, John Paul II justifies organ donation and transplantation based on charity ingeneral. In the address on blood and organ donations of August 1984, John Paul IIcommended the National Association of Italian volunteer blood and organ donors for theirspirit and initiative. He urged them "to promote and encourage such a noble and meritoriousact as donating your own blood or an organ to those of your brothers and sisters who haveneed of it.’’In addition, in an address to a Congress on Renal Illness and Transplants (April 30, 1990), hespeaks about the Churchs main concern for renal illness and donations. The Pope asks thedirectors of Catholic institutions to encourage this generous act of organ donations: "Thosewho believe in our Lord Jesus Christ, who gave his life for the salvation of all, shouldrecognize in the urgent need for a ready availability of organs for renal transplants achallenge to their generosity and fraternal love.’’Further, in his address to the participants of the first International Congress of the Society forOrgan Sharing (June 20, 1992), the Pope considered organ transplantation as a new way ofserving the human family. In organ transplantation man/woman has found a way to givehimself/herself, in blood and body. This gesture allows others to continue to live.This gift is actually an authentic form of human and Christian solidarity. Similarly, John PaulII writes in Evangelium Vitae no. 86 that organ donation is an act of love when it is done inan ethical manner. The death and resurrection of Jesus Christ establishes the supreme act oflove. This extends a deep meaning to the donors offering, which is saving the life of anotherperson. Love (charity) constitutes the main element in organ donation and transplantation,especially in the case of the organ donor.Moreover, other religions also support organ donation and transplantation even if their pointof emphasis is slightly different. • In Judaism, Rabbi R. P. Bulka observes: "One may laud the donor who makes ... a heroic sacrifice, but it certainly would not be proper to place pressure on individuals to be so altruistic." • Greek Orthodox Church, Stanley S. Harakas writes about the donation of a kidney. Organ donation rescues "the life of another person as a loving act of mercy. The donor is to be commended if he perceives his sacrifice not as a violation of his bodily integrity, but as a gracious and loving unselfish act." • Quoran and Hadith (the Prophet Mohammeds sayings and examples), the Islamic Code of Medical Ethics (1981) upholds: "If the living are able to donate, then the dead are even more so; no harm will afflict the cadaver if the heart, kidneys, eyes or arteries are taken to be put to good use in a living person. This is indeed charity." • In the Buddhist tradition, organ donation is an act of helping another person in his/her extreme need. It is an act of generosity and compassion. Organ donation and transplantation is acceptable also in the Hindu tradition.Care for the other and altruism are the secular terms that we can find in the literature on organdonation and transplantation. Even if many use these terms, the basic idea behind them is 33
  34. 34. charity. Here, care for the other or altruism in organ donation is not self-sacrifice alone, butthere is sufficient self-concern for ones own self. Many scholars justify organ donation onthe basis of altruism, charity, love or care for the other. From what has been stated there is nomoral obligation for organ donation. The virtue of charity is the main motive for it.According to the Catholic perspective, donors can donate organs except brain andreproductive organs. The brain is significantly determinative of personal identity. Thereproductive organs are associated with reproductive identity. Neither the brain nor thereproductive organs may be procured from human beings or animals for transplant to ahuman person (Evangelium Vitae no. 63).Church also holds that "to take tissue from a live foetus for transplantation is unethical"(Evangelium Vitae no. 63). Great concern must be given to ensure that all cadaveric foetaltissue to be used for transplantation is derived from natural miscarriages or from ethicallyobtained cell lines.Commercialisation has a serious negative impact on many of the medical and ethical valuesintimately connected with organ transplantation. The Catholic Church is against paid organdonation. Parts of the human body are not to be treated as commodities. Trade in human bodyparts is unacceptable, as in any other disrespectful use of the organs or tissues of a living ordeceased person. At the World Congress of the Transplantation Society (Rome-2000), JohnPaul II said "any procedure which tends to commercialize human organs or to consider themas items of exchange or trade must be considered morally unacceptable, because to use thebody as an "object" is to violate the dignity of the human person." Paid organ donationspoils the spirit of altruism. In paid organ donation, one does not fully respect the other.Ethical Issues Connected With DonorThe main ethical concerns related to living organ donation include functional integrity, andthe consent of the donor.Catholic Church has used the principle of totality for the justification of living organ donationand transplantation. A simple expression of the principle of totality means, "the parts of thephysical entity, as parts, are ordained to the good of the physical whole. "From the medicalperspective, the principle of totality would mean "all the parts of the human body, as parts,are meant to exist and function for the good of the whole body, and are thus naturallysubordinated to the good of the whole body." The term "totality" points to the duty to preserveintact the physical component of that integrated whole. The official statement of the Churchregarding the application of the principle of totality to medical problems can be seen mainlyin the period of Pius XII. He reaffirmed, clarified, and applied the principle of totality tomedico-moral questions in many addresses delivered from 1944-1958. According to him, "apart of the body has no meaning outside its reference to the whole that as a part is to bethought of only in relation to the whole."Understand the difference between functional integrity and anatomical integrity. One mustdistinguish between the good of the adequately functioning body and the good of the fullintegrity of the anatomical whole." The principle of totality is concerned with the former andnot the latter. 34
  35. 35. Ashley & K. D. ORourke presents their own formulation of the principle of totality and callsit the principle of “Totality and Integrity. It reads as follows:"Except to save life itself, the fundamental functional capacities which constitute the humanperson should not be destroyed, but preserved, developed, and used for the good of the wholeperson and of the community." On the one side this principle grants priority for some humanvalues over others. On the other side, it breaks the "fundamental integrity" of human personfor certain kind of worth, "except in the most extreme choice between life and death.’’For Benedict M. Ashley and Kevin D. ORourke, organ transplants are justified when thefunctional integrity of the donor is maintained. They give a summary of moral reflections onliving organ donation and they present certain principles for living organ donation andtransplantation: • There should be a serious need faced by the patient, which can only be satisfied by organ donation. • Even if donation reduces "anatomical integrity, it should not diminish the "functional integrity" of the person. • The risk in donation as "an act of charity is [to be] proportionate to the good resulting for the recipient."5 • There should be "free and informed consent" by the donor. All these norms can be seen in the principle of totality.The 1975 Ethical and Religious Directives for Catholic Health Care Facilities states "[T] hetransplantation of organs from living donors is morally permissible when the anticipatedbenefit to the recipient is proportionate to the harm done to the donor." The Directives alsomention that the donations of organ should not reduce the "functional integrity" of onesbody. Moreover, the 1994 Directives, section no. 30 directly deals with the need ofsafeguarding functional integrity in living organ donation and transplantation. It reads asfollows: The transplantation of organs from living donors is morally permissible when such a donation will not sacrifice or seriously impair any essential bodily function and the anticipated benefit to the recipient is proportionate to the harm done to the donor. Furthermore, the freedom of prospective donor must be respected, and economic advantage should not accrue to the donor.Informed Consent of the DonorThe informed consent of the donor is another key requirement in living organ andtransplantation. If donors decision is not autonomous or self-determined this leads to treatinga person without respect. Respect for autonomy requires that the donor must be able toexercise the power of free choice.In the case of living organ donation, no physiological benefit is to be expected by the donor.It is clear that the first matter of critical importance is how far the amount of risk, pain, andlength of incapacity is communicated to the donor so that an informed decision can be made. 35
  36. 36. Art. 3 of the WHO Declaration states that "the donor should not be influenced or abused."Organ donation, says John Paul II, is a free and conscious decision either on the part of thedonor, or of someone who legitimately represents the donor. It is also a decision of givingwithout any remuneration. Really, donation concerns the well being of another person. It isvery difficult to make an assessment of fully informed consent of the potential donors,especially in the case of prisoners, mentally challenged persons, and minors.Cadaveric Organ DonationThe donation of organs and tissues after death is a generous act. With regard to the cadavericorgan donation and transplantation, the main ethical issues include the concept of brain death,and consent.Ethical Issues Connected with the RecipientThere should be a proportionate relation between physical risk to the donor and good for therecipient. The risk in donation as "an act of charity is [to be] proportionate to the goodresulting for the recipient." CCC no. 2296 states: Organ transplants confirm with the moral law and can be meritorious if the physical or psychological dangers and risks incurred by the donor are proportionate to the good sought for the recipient. It is morally inadmissible directly to bring about the disabling mutilation or death of a human being, even in order to delay the death of other persons.The general principle that surgery cannot be carried out without the consent of the person tobe operated upon is equally applicable to organ transplantation as well. Recipients alsoshould give their consent for the operation. The physician should inform the donor and therecipient in an honest, appropriate and comprehensible manner of the possible risks of organdonation and transplantation.According to Catholic perspective "patients should be treated equally when being admitted totransplant programmes. There should be no unjust discrimination on the basis of socialfactors such as inability to pay, mental illness, past misuse of substances, lack of familysupport, lack of education, advanced age, remoteness or ethnicity. Only clinical factors suchas urgency, need and ability to benefit should be taken into account.’’XenotransplantationTransplantation of animal organs to human being is permissible provided the procedure willnot impair the integrity of the recipient nor impose inordinate risks on the recipient or others.With regard to the animal-human hybridisation, Church says that "the introduction of parts ofthe human genome into animal tissue or vice versa must not involve extensive animal-humanhybridisation, inheritable changes to a human being, or the formation of an organismpossessing some human and some animal material which may capable of further developmentas an embryo."71Promotion of Organ Donation and Transplantation 36
  37. 37. The present state of organ donation and transplantation includes different types oftransplantation, different types of donations and one should consider also the medical, moral,and legal problems connected with the practice of organ donation and transplantation.Types of TransplantationAuto grafts, isographs, homographs, and heterografts.Auto graft (syngenic) is the transplanting of an organ or tissue within the same individualfrom one part of the body to another.Isograft (Isogenic) is the transplantation of organs or tissues between two geneticallyidentical individuals, such as identical twins.Homograft (allogenic graft) is the transplantation of an organ from one individual to anotherwithin the same species.Heterograft (Xenogenic graft) is the transfer of organs between individuals of differentspecies, usually from animals to human beings.Types of DonationsCadaveric and living organs are the two main sources for transplantation.The cadaveric donation includes related and unrelated donations.There are five types of living organ donations: - Living Related Donation: donation between genetically related persons, - Living Unrelated Donation: donation between non-genetic or non-emotional persons. There may be also emotionally related transplantations. - Crossover Transplantation: In renal transplantation certain donors cannot donate their organs to a particular recipient because of the ABO incompatibility and other problems with histocompatibility (e.g. positive T-cell cross matches) but without any ABO problem with other recipients (crossover transplantation). For instance, donor A cannot give a kidney to recipient A but he/she can give it to recipient B. Similarly donor B cannot give a kidney to recipient B; but he/she can donate to recipient A. - Domino: in this programme an organ may be transplanted to a patient whose own organ then still can help another patient on the waiting list. - Indirect Living Organ Donation: close relative of a recipient wants to donate his/her kidney to the donor. But this living related transplantation is not possible due to blood group incompatibility. The recipient is then placed higher on the waiting list, while the organ from the donor is added to the organ pool.We have seen in the last section the ethical issues related to organ donation andtransplantation. The virtue of charity will be an important element in increasing organdonation. This kind of value education can be promoted both by religious groups and bysecular agencies. 37
  38. 38. This inter-human relationship is very clear in the case of organ donation and transplantation,which expressed in the relation between donor and the recipient. It is not an "I-It"relationship, but an I-Thou relationship. This means the donor is moved by the face of theother (recipient) who is in a critical stage, which is helpless. The deep relationship shows theempathy with the other. For instance, the French philosopher Merleau-Ponty writes: - There is an essential relationship between body and consciousness such that the body is never - even throughout transplant surgery - just a body, but rather a perceiving entity, that is to say animate. - Every body receives its specificity and becomes animate through the perception of another.’’Organ donation also highlights the value of solidarity in society, especially in medicine.Organ donation points to a social dimension where donors and the recipients are part of thesociety. The social aspect is also one of the elements that assist in making decisions in organdonation and transplantation. The value of solidarity encourages the donors and recipients,and others who participate in transplantation, to make responsible decisions. We also arguethat from a moral point of view, commercialisation of organs does not promote organdonation and transplantation. Selling body parts for money reduces the value of the person.There should be no material profit in charitable or altruistic organ donation. In the presentsituation where we are facing a crisis of organ shortage, helping patients who are in a criticalstage, really shows the social character of the human person.ConclusionThere is a real scarcity of human organs even though organ transplantation facilities arewidely available. In this context, both living and cadaveric organ donation and transplantationshould be promoted. • African and ethnic minority should be encouraged to be involved in organ donation to ease the waiting list of their kin men and women on the organ donation programme. • Africans should do their best to be exposed to all available resources in the environment in which they live so that they can utilise these resources to their fullest advantage as well as contribute to it to make successful it for mutual benefit. • Africans and other ethnic minority should not socially exclude themselves from community activities like organ donation because when they do so it is to their detriment because if you do not give, you will not receive and when you freely give, you also freely receive. • The bible says that for lack of knowledge our people perish, Africans must do everything possible to acquire knowledge and good education because there is power in knowledge and education. • In order to prevent commercialization, transplantation law should be promulgated effectively and purposeful programme to eliminating poverty is another step towards decreasing the commercialization of human organs. 38
  39. 39. • Governments should control agencies and hospitals engaged in transplantation with respect to their profit motives. • International co-operation should be promoted in organ donation and transplantation. Developed countries can help developing countries in promoting research in transplantation technology. A global vision associated with a local vision can facilitate the promotion of organ donation and transplantation. • One of the efficient means to promote organ donation is to educate people about the scarcity of human organs for transplantation and Africans should be in the forefront of this campaign as presently they are the most disadvantaged.Evangelium Vitae (no. 101) speaks about the proclamation and promotion of life: "TheGospel of life is given to us as a good to be shared with all people including Africans: so thatall men and women may have fellowship with us and with the Trinity." Organ donation andtransplantation highlights the relational and social dimensions of human life. Through organdonation and transplantation also one can proclaim and promote the gospel of life. Moreclearly, patients in a critical stage of kidney or other organ failure have to either undergotransplantation or face death. In these people one has to see the real face of the other. Wehave to promote basic ethical care for the other. We cannot force anyone to donate, butpeople should be motivated to make free and voluntary donations. In this condition, a spirit ofcharity, relevant both from religious and secular points of view can work properly withregard to the promotion of organReferences1, UK Obstetric Surveillance System (UKOSS), Dr Marian Knight from the NationalPerinatal Epidemiology Unit at the University of OxfordCentre for Maternal and Child Enquiries (CMACE) Perinatal Mortality 2008: United Kingdom.CMACE: London,http://health.howstuffworks.com/medicine/modern/face-transplant1.htmP. Bruzzone: Religious Aspects of Organ TransplantationVolume 40, Issue 4, Pages 1064-1067 (May 2008)Cultural aspects of Organ transplant: Ann Acad Med Singapore. 1992 May; 21(3):421-7.Scaria Kanniyakonil: The Promotion of Organ Donation and Transplantationhttp://www.lifeissues.net/writers/kan/kan_03organdonation1.html#b25NHS information leaflet on organ donation 39
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  42. 42. FAITH and FACTS Balancing Perspectives and Achieving EngagementSharon Platt-McDonald MSC, RHV, RM, RGN Faith and Facts 42
  43. 43. OverviewIt is stated that faith is the confident belief or trust in the truth or trustworthiness of a person,idea, or thing. Faith impacts may aspects of an individual’s life. Studies demonstrate thatreligious beliefs and practice amongst some cultural groups in the UK may precludeindividuals from making health choices that are deemed by medical professionals to beadvantageous to their health. Find out what their faith permits and how they feel about itsinterpretation. This enables better engagement when seeking to progress work around raisingorgan donation amongst BME groups.This summary paper also identifies how Seventh-day Adventists as a faith group is workingto raise awareness about organ donation within their church community and externally.Faith • Faith is the confident belief or trust in the truth or trustworthiness of a person, idea, or thing. • Religious beliefs and practice amongst some cultural groups in the UK may preclude individuals from making health choices that are deemed by medical professionals to be advantageous to their health. • Find out what their faith permits and how they feel about its interpretation.Fact 43
  44. 44. Some facts you may already know • BME are 3-4 times more likely to be affected with kidney failure • The organ donor taskforce states that 8% of the UK population are of BME origins yet 25% of patients actively waiting for kidney transplants are from the BME population • BME’s wait anywhere between 2-8 years for kidney transplant • BME’s are more likely to die waiting for transplants. • Only 1.7% of donors are black, 1.6% Asian and 95.6% are white. • Organ transplantation has brought about a revolution in the treatment of diseases such as end-stage kidney, heart, and liver failure. • Organs will have a better life expectancy coming from its own ethnic group (this is what we call tissue typing).The Gift of Life • Organ transplantation has brought about a revolution in the treatment of diseases such as end-stage kidney, heart, and liver failure. • Organs will have a better life expectancy coming from its own ethnic group (this is what we call tissue typing). 44
  45. 45. InformationMuch stereotypical ideas and prejudices are due to lack of information. Here are a fewsuggestions when raising awareness about organ donation. • Find out what people know • Find out what people don’t know - then inform them • Use the published resources e.g. NHS UK Transplant which identifies specific faith groups and their beliefs and practice around organ donation • We need to share information on what faith groups believe in order to foster better understanding of cultural norms • We need to disseminate more widely information on the cultural risk factors for kidney diseaseGiving information without any connection does not always yield the best results.Befriending and building trust are keys to encourage engagement. Here are some ideas I haveimplemented in the past with positive outcomes.Building Trust“The people whose lives you touch may forget what you said, but they will never forgethow you made them feel.” — David B. Haight, 45
  46. 46. • Inform the faith community of the importance of their involvement in shaping the awareness of organ donation in their community and faith group • Use specific faith / culturally targeted resources e.g. NHS UK Transplant leaflets • Include reports / testimonials of organ recipients or donors from BME background • Involve faith leaders in decision making so they feel included in the process • Invite people of faith to join the debate so their views are representedBefriending • Become acquainted with the beliefs / views of diverse faith groups • Attend their community events and show interest in their way of life • Find out what is important to them • Ask them what they feel would be helpful in reaching people from their faith or ethnic background • Involve individuals who they respect or leaders in their community to help champion the messageTackling FearMichael Prithard - “Fear is that little darkroom where negatives are developed” 46
  47. 47. • Much fear is based on ignorance • Find out what people are afraid or unsure of • Be informed – use data and published resources to answer their questions where relevant • Present information in places they frequently attend • Invite them to awareness events to give them additional information • The NHS UK Transplant leaflets which identifies specific faith groups and their beliefs and practice around organ donation can provide a basis for discussionPersonalise the MessageIt was Dennis Kimbro who said this: Success is knowing that one human being hasbreathed a little easier because you lived • Think of a relative, a neighbor, a church member, a work colleague whom you know have severe hypertension, uncontrolled diabetes or already suffering from some degree of renal failure. • Find out the places they frequent and whether they would like you to assist them with raising the awareness for donors in their community. • Touch base with them, befriend them, try and understand the condition they are facing, take time to listen to them, empathize and encourage. • Find out from them what they feel would be helpful in raising awareness 47
  48. 48. SDA Church EngagementHere is an outline of how the Seventh-day Adventist church in the British Isles have beenworking to raise awareness in this area • 2007 – Sharon Platt-McDonald became a member of the Organ Taskforce working group as a representative for the SDA church in the British Isles • Reported all organ donation meetings I attended in National journals and church magazines / publications to raise awareness that this was an important issue • 2009 – One of our church members- Sonia Clarke Swaby received the prestigious Mary Seacole Award for her work as a Transplant Coordinator and progressed work to raise awareness on organ donation amongst ethnic minority groups • On an annual basis I write to 300+ health ministry leaders and health professionals in our churches across the British Isles to update on organ donation work • I have involved our organisational presidents, executive officers / leaders and pastors to participate in evaluation of faith related Organ Donation leaflets • I was invited to make a presentation to the British Union Conference Executive committee of 40 members to present on Organ Donation and the involvement of our church annually • 4 pastors representing our large majority ethnic minority churches (Luton, Leicester, Leeds, Southall) were interviewed and included in focus groups to discuss their beliefs around Gifting 48
  49. 49. • I have been engaged as a speaker at community events on raising awareness re Organ Donation • Following awareness events, I write up community events in national newspaper e.g. The Voice re our church input in this key area • In order to spread the message I have sought to engage the following groups and departments within our church community: e.g. Health, Communications, Youth, Education, Women Ministries, Men Ministries, Community Services, Pastoral and Outreach MinistriesHope“Hope is the companion of power, and mother of success; for who so hopes strongly haswithin him the gift of miracles” Samuel Smiles Hope is also about celebrating the milestones along the way. This helps individuals realisethat progress is possible even though it may take time. • In order to break barriers and touch lives we need to engender hope in others. • Our goal is to increase the amount of donors. • The gift of life gives people hope. 49
  50. 50. PersistenceJames Bryant Conant states: “Behold the turtle. He only makes progress when he sticks hisneck out • Be persistent in sharing the message • Find creative ways of raising awareness and keep asking what is relevant for the groups you are trying to reach • If one approach does not work, try another • Keep informing faith groups of the message you are trying to put acrossBreaking Barriers – Touching Lives 50
  51. 51. Achieving Engagement“Everyone is trying to accomplish something big, not realizing that life is made up of littlethings” Frank A Clarke • Find out what people want to know • It’s easy to assume that people know where to find relevant information or have knowledge about what is available. • Make people feel that their contribution is important • Identify barriers and address them • Work with faith and community leaders so that this becomes their project which they engage in, not something they observe from the sidelines • Offer people choices – this opens up perspective and very often they make the better choice. • Keep the goal of achieving more donors as an end point but bring people along with you on the journey to the destination.Finally • Be persistent in sharing the message • Find creative ways of raising awareness and keep asking what is relevant for the groups you are trying to reach • If one approach does not work, try another • Keep informing faith groups of the message you are trying to put across“Everyone is trying to accomplish something big, not realizing that life is made up of littlethings” Frank A Clarke. Success happen one step at a time. Therefore celebrating themilestones along the way keeps the vision of our goals illuminated. Raising awareness fororgan donation is possible amongst all communities but more so amongst those of BMEgroups. Let’s celebrate the journey so far. 51
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  53. 53. Religious Perspectives on Organ DonationThomas Halley 53
  54. 54. What do the major religions say?The six major world faiths in Britain (Buddhism, Christianity, Hinduism, Islam, Judaism andSikhism) are all supportive of organ donation. Details, including quotations from faithleaders, are available from an NHS online leaflet: http://www.organdonation.nhs.uk/ukt/newsroom/fact_sheets/religious_leaflets/general_religious_leaflet_2009.pdfOfficially – no objectionDiversityWhile this leaflet is based on accurate research, the overall picture of religious perspectives ismore complex. Firstly there are minority faiths that fall outside the parameters of the majorworld faiths (e.g. Jainism, Baha’ism, Rastafarianism, Shintoism, Confucianism,Zoroastrianism, and Jehovah’s Witnesses). Secondly, within the major religions themselvesthere may be a diverse range of ways of interpreting sacred texts, leading to conflicting viewson a sensitive subject like organ donation. There may even be no single agreed religious 54
  55. 55. authority to speak on such matters in a way that would fairly represent the adherents of aparticular faith group.The following groups may have objections to organ donations on religious or culturalgrounds: • (Judaism) – some isolated Orthodox rabbis • (Islam) - some South Asian Muslim scholars • Christian Science • Jehovah’s Witnesses • Shintoists • Confucians • Native Americans • Roma • African AmericansIt will be noticed that some of these groups are ethnic or cultural groups rather than faithgroups. The first four on the list may be basing their objections on their particularinterpretations of sacred texts. As for the latter five groups, they may be coming from aperspective of folk religion, where a desire for the body to remain intact at death may belinked to a fear that the spirit from an incomplete body may not be able to find rest.Respect for Conscience 55
  56. 56. Whatever the reasons for a person having reservations about organ donation, in ourglobalised world we must be prepared for situations where people who might benefit fromorgan donations may initially have a problem reconciling these kinds of surgical procedureswith their conscience. We may be impatient with people who seem to be opposing theprogress of modern healthcare, but to override someone’s religious or cultural beliefs couldcause more problems than we realise. Pope John Paul II even went as far as to say, “Forcingsomeone to violate his conscience ‘is the most painful blow inflicted to human dignity. In acertain sense, it is worse than inflicting physical death, or killing.’”Religious people can change...Although people may have religious reasons for opposing organ donation, we do not need toassume that people will hold these views unwaveringly throughout their lifetime. People canchange. When faced with a life-threatening illness in their own life or the life of a loved one,a theoretical view can sometimes change and people can begin to consider receiving helpfrom medical technology that was once considered objectionable.And it is not just people that change; organisations can change too. The Jehovah’s Witnessesare a case in point. Over the years this religious group has earned a reputation for opposingblood transfusion, and before 1980 they did not permit organ donation. However, the positionon organ donation has subsequently changed and their official website currently states:The Witnesses do not feel that the Bible comments directly on organ transplants; hence,decisions regarding cornea, kidney, or other tissue transplants must be made by theindividual Witness.http://www.watchtower.org/e/hb/index.htm 56
  57. 57. A study of Native American views on organ donation has also shown a change in viewpointsover time.There was some initial resistance to the idea of organ donation because traditional healers hadbeliefs about the body having to remain intact in order to enter the spirit world. However, itwas found that most tribes had prayers and rituals that could be used to keep the spirit wholein cases when the body was not intact at the time of death. In this way the benefits of modernscience could be embraced without abandoning ancient traditions.Some people from African, Afro-Caribbean and African American backgrounds may havereservations about donating organs from deceased patients, because of the custom of opencasket funerals. Yet this need not be a problem once it has been understood that organdonation does not mutilate the body in a visible way that would make an open casket funeralimpossible. Once again, people are likely to change their views on this topic once the factshave been clearly explained and fears have been allayed. 57
  58. 58. Ethical objectionsAs we examine religious views on organ donation we could make a generalisation thatalthough some elements of folk religion can cause opposition to organ donation, there is moresupport than opposition from the established faith groups. Where opposition does occur in themajor world faiths, it is more to do with related ethical issues, rather than organ donation initself.For example, there are questions which revolve around the technical definition of the point ofdeath. Is a person dead when the heart stops beating or when brain function ceases? Wherepeople are unclear on this issue there may be concern about organs being harvested frompeople before they are completely dead.A second cause for concern arises in cases when money has changed hands, either as a directpayment for an organ or as some sort of compensation. Pope John Paul II has stronglyobjected to this practice:“… any procedure which tends to commercialise human organs or to consider them as itemsof exchange or trade must be considered morally unacceptable, because to use the body asan object is to violate the dignity of the human person.”Thirdly, there is the potential for exploitation of the poor and vulnerable. African Americanshave shown some resistance to organ donation which has been based on a long history ofexploitation and abuse at the hands of European Americans. This has given rise to fears thatwhite doctors might not do their utmost to keep black people alive, especially if a whiteperson is waiting for organs belonging to a black patient. 58
  59. 59. Furthermore, there is the case of Kenichiro Hokamura, a Japanese man with a failing kidney.Having grown impatient with waiting for a transplant in a country with cultural taboosagainst organ donation, he went online and bought a kidney from a Chinese man who was ondeath row. “I feel sorry for the executed man but he was going to die anyway, and now hiskidney is contributing to a life again.”This cost the patient about £33,000, but even the most fervent supporter of capitalpunishment might have concerns about the potential for the abuse of human rights if thiskind of transaction were to become commonplace.http://search.japantimes.co.jp/cgi-bin/nn20100823a5.htmlConclusionWe have seen that while the official teachings of the larger world faiths support organdonation, individuals form these faiths may have objections, whether for cultural reasons ordue to different interpretations of scripture. Beliefs which fall under the umbrella of folkreligion may be more likely to conflict with organ donation, but it is possible for people tochange when they are given the time and space to understand new technology and adapttraditions and rituals. Where ethical dilemmas arise in connection with organ donation thenpeople of all faiths or none will look to legislators to protect the vulnerable from exploitation.There may also be a need for medical and nursing colleges to ensure that trainee healthcareprofessionals are aware of the links between the religious beliefs of patients and attitudes toorgan donation. 59
  60. 60. 60
  61. 61. Organ Donor Recipient TestimonyMr Kirit Modi 61
  62. 62. EBEMRC Essex Black & Ethnic Minority Research Centre Invitation to attend Organ Donation Awareness WorkshopThe aim of the workshop is for experts to present clinical facts aboutorgan donation and transplant and for cultural and faith leaders todiscuss the social, cultural and religious perspectives to organdonation and to see these as a way of saving more lives.Place: Brentwood, EssexVenue: Sawyers Church Hall, Sawyer Hall Lane Brentwood, CM15 9BNDate: 25 September 2010Time: 12: 00 – 17:00 hours Dinner will be served after the workshop For more information or to reserve a place please contact info@ebemrc.org.uk or call Dr Osaru Iguisi 07981990263 62
  63. 63. EBEMRCEssex Black & Ethnic Minority Resource/Research Centre (EBEMRC) is a registered charitywith the strategic mandate to promote business, education, employment, health, social andcultural wellbeing of Black and Ethnic Minority (BEM) communities living in Essex, throughResearch, Skills Development Training and Engagement Consultancy.Statistics show that Black and Ethnic Minority community members experience lowpatronage of healthcare services, low educational achievement, higher unemployment rates,greater concentrations in routine and semi-routine work and lower earnings. Black and EthnicMinority members, even those enjoying relative success, have been found not to be doing aswell as they should be given their educational, professional and other characteristics. Amongthe many barriers found to these are lack of engagement between BEM communities, policy-makers and service providers, lack of services that are tailored to meet the needs of BEMcommunities, discrimination by employers and service providers, no additional specialistservices but adopting the provision of mainstream services to meet the needs of these groups.Addressing these issues requires engagement by a wide range of organisations in the public,private and voluntary sectors.In order to address the barriers and meet the needs of the BEM communities in Essex,EBEMRC has created six divisions to build knowledge base in the areas of cultural diversityand awareness training, business, education and employment mentoring, employability skillstraining, healthcare services research and awareness creation, local partnerships and networksin the public and voluntary sectors.Current Event: BEM Organ Donation and Transplant Awareness Workshop10,000 people in UK are in need of organ transplant to save or enhance their lives. Within theBEM community, organ donation rates are relatively low among black African, Caribbeanand South Asian people and are 3 times more likely to need a kidney transplant than thewhite population. Last year, more than 60 black African, Caribbean and Asian patients diedwhile waiting.Chris Rudge of UK Transplant provided evidence that 23% of the people who are waiting foran organ transplant are from black African, Caribbean and South Asian ethnic minoritygroups and only 3% of organ donors come from that background. Professor Gurch Randhawaof University of Bedfordshire, Institute for Health Research said that a transplant would besuccessful only if the donor came from the same ethnic group as the recipient so that therewas a better chance of a close match of tissue type and blood group between the donor organand the recipient.To effectively address the problem of low rate of organ donation among the Black African,Caribbean and South Asian groups requires education and raising awareness of issuespertaining to clinical, cultural and religious values among BEM and the mainstreamcommunity. It is important to consider whether issues of cultural, economic and religiousvalue differences have influence on organ donation rate among the mainstream groups andthe different BEM communities. 63
  64. 64. EBEMRC Essex Black & Ethnic Minority Research Centre Registered Charity Organisation BEM BLOOD AND ORGAN DONATION AWARENESS WORKSHOP Workshop Agenda (Brentwood, 25/09/2010)Workshop MC: Dr Emmanuel Okoro and Barrister Mrs OhakweTime Programme Activities12.00 – 12:20 Arrival and registration12:20 – 12:25 Welcome address by Dr Osaru Iguisi & Pastor Jordan12:25 – 13:25 Blood and organ transplant presentations (Michelle Tyler and Prof. Gurch Randhawa)13:25 - 13:35 Cold buffet/Tea/coffee break13:35 - 13:45 Testimony of Mrs Kala Mistry’s (organ recipient)13:45 - 14:45 Clinical, cultural and religious perspectives (Dr Ogbonmwan, Sharon Platt-Mcdonald, Thomas Halley)14:45 – 14:55 Traditional African and Asian drummers14:55 – 15:00 Testimony of Mr Kirit Modi (organ recipient)15:00 – 16:20 Discussions, questions and answers session16:20 – 16:30 Closing remarks16:30 – 16:00 Photographs17:00 Dinner 64
  65. 65. Workshop Speakers• Professor Gurch Randhawa, Director, Institute for Health Research, University of Bedfordshire • Sharon Platt-Mcdonald, Director, Health Ministries/Disability Awareness, British Union Conference of Seventh-day Adventists • Michelle Tyler, Team Manager, NHS Eastern Organ Donation Services • Dr Stephen E.O. Ogbonmwan, Consultant Gynaecologist • Thomas Halley, Sawyers Church, Brentwood • Kala Mistry, Organ recipient • Kirit Modi, Organ recipient Masters of Ceremony Dr Emmanuel Okoro, MD Barrister Mrs Pat Ohakwe 65