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Organ Donation Teaching Resource Pack SCOTTISH EXECUTIVE

B27503 Organ Retention FINAL - gov.scot · Kidney transplants are the most commonly performed. Transplants are regularly carried out on the heart, liver, lungs and pancreas. Tissue

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Page 1: B27503 Organ Retention FINAL - gov.scot · Kidney transplants are the most commonly performed. Transplants are regularly carried out on the heart, liver, lungs and pancreas. Tissue

OrganDonationTeaching Resource Pack

SCOTTISH EXECUTIVE

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OrganDonationTeaching Resource Pack

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© Crown copyright 2003

ISBN 0 7559 0592 X

Published byScottish ExecutiveSt Andrew’s HouseEdinburgh

Produced for the Scottish Executive by Astron B27503 8-03

Further copies are available fromThe Stationery Office Bookshop71 Lothian Road Edinburgh EH3 9AZTel: 0870 606 55 66

The text pages of this document are produced from 100% elemental chlorine-free,environmentally-preferred material and are 100% recyclable.

Acknowledgements

This pack has been developed with financial assistance from:

The Scottish Executive Health Department

NHS United Kingdom Transplant

The British Transplantation Society

Thanks also go to St Augustine’s School, Edinburgh, for the secondment of Mrs Rosa Murray towork on its development, and to the transplant community in the UK for advice and assistance.The Executive is also grateful to the families who agreed to take part in the video.

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Page

Introduction 1

Guidance for Teachers 3

Transplantation Milestones 5

Transplant Laws in the UK 7

The Need for Transplants 12

Statistics 20

Transplantation Process 22

Donor/Recipient Stories 29

Ethical Dilemmas 39

Religious Views 42

The Future 44

Some Common Questions and Answers 47

Activity Sheets 55

Personal Reflections 62

Glossary of Terms 65

OrganDonationTeaching Resource Pack

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OrganDonationTeaching Resource Pack

These resources have been written as a responseto a recommendation made by the ScottishTransplant Group. This Group began meeting inFebruary 2001. Its remit is to give advice andmake recommendations to the Scottish Executiveon matters relating to organ donation andtransplantation, this being an area in whichHealth Ministers both then and now have shownparticular interest. It soon became very clear tothe Group that raising awareness about organdonation and transplantation was crucial and thateducation has a vital role in this process ofawareness, particularly in the context of youngpeople. The concept of the teaching resource packwas endorsed by the then Education Minister.

The need for donor organs is expected to increaseas transplant surgery becomes increasingly commonand more successful. However, transplantation isstrictly limited by the number of available organs,and this is influenced by several factors:

• improved management of patients with brainhaemorrhage or head injury;

• more people involved in car accidents aresurviving;

• dramatic decrease in road traffic accidents.

This is all good news, but the consequences arethat not enough organs are available fortransplantation, and the waiting lists are increasing.

The content of the pack is in keeping with theNational Priorities. The Scottish Executive hasidentified five National Priorities which all EducationAuthorities must address in its Improvement Plan.The fourth National Priority is in the context ofValues and Citizenship, and states that theEducation Authority wants:

“To work with parents to teach pupilsrespect for self and one another and theirinterdependence with other members oftheir neighbourhood and society and toteach them the duties and responsibilities ofcitizenship in a democratic society.”

The materials within this resource pack addressthis National Priority by raising awareness of theissues within transplantation and organ donationfor our society today.

The general public has mostly positive views aboutorgan donation, but often these do not translateinto communication of their wishes to their lovedones, joining the NHS Organ Donor Register, orcarrying a donor card. There is also a perceivedgeneral lack of knowledge amongst the generalpublic about key concepts in organ donation andtransplantation.

Apart from its intrinsic value as a teaching resourcefor both Personal and Social Education (PSE) andReligious, Moral and Philosophical Studies (RMPS),the development of this pack has the potential, intime, to create a generation who can makeinformed choices about organ donation. Thesematerials therefore are written to create awareness,to impart information, and to encourage discussionon the ethical issues around organ donation andtransplantation. It is then for young adults to makeinformed choices.

Knowledge and information should also reduce anypossible fears and confusions which may persistaround these issues.

These materials have been written withthe collaboration of:

• Scottish Executive Health Department;

• NHS UK Transplant;

• British Transplantation Society;

• transplant co-ordinators;

• surgeons and physicians;

• Scottish Executive Education Department;

• Scottish Health Promoting Schools Unit.

Introduction

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Aims

• To create awareness in senior school pupils ofmatters related to organ donation andtransplantation.

• To discuss ethical issues surrounding organdonation and transplantation.

• To be aware of work currently being done intransplantation and of future developments.

• To empower young people to be able tomake informed choices about organdonation and transplantation, from aknowledgeable context.

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OrganDonationTeaching Resource Pack

The aim of the materials in this pack is to educateyoung people on the issues surrounding organdonation and transplantation, not to promote thesubject or pressurise them into consent orparticipation. Young people and adults, throughouttheir lives, are faced with choices about a wholerange of issues. These materials are designed toenable informed, educated choices in this veryimportant area for our society.

The materials can be used with senior pupils aspart of their core RME or PSD programmes.They can also be used with certificate classes whoare studying the following SQA Courses or Unitsin the RMPS:

• Intermediate 1 Medical Ethics • Intermediate 2 Medical Ethics• Advanced Higher Prolongation of Life

Teachers should ensure they are working from themost recent SQA RMPS arrangements and thatthey follow the correct assessment procedures asrequired by the SQA.

The materials are also designed for use in theSenior School Personal, Social EducationProgrammes (PSE). The resources aim to be ascontemporary as possible, but inevitably by theirvery nature these issues are changing as medicineand science progress. It would therefore beimportant for teachers to ‘keep up to date’ byreferring to the appropriate websites mentionedin the resources. It would also be important tocheck for the most recent statistics and data.

The resources are designed to bring out the issueswhich lie behind organ donation andtransplantation. Teachers would not necessarily useall the units, but rather exercise their professionaldiscretion to select appropriately according to theeducational need and timescale allowed.

Methodologically, the aim is to stimulate discussionand informed debate. The units are designed toencourage:

thinking

enquiry

analysis/evaluation

reflection

expression

The pupils should be encouraged to form theirown opinions through a process of personal search,while at the same time appreciating other opinionswhich come from an equally well-informed position.

The importance of these resources and the implicitmethodology cannot be overstated. As citizens,young people, like all of us, are required to makedecisions. Sometimes these are decisions whichmake the difference between life and death.Clearly this is the essence of organ donation andtransplantation. However, it is virtually impossibleto develop the ability to express ideas and engagein the critical thinking that leads to decisionmaking without first establishing a firm basis inrelevant knowledge and understanding. Studentsneed to be encouraged therefore not only toacquire and retain knowledge but to appreciatethe importance of knowledge and evidence as thebasis for expressing and justifying their opinions.It is hoped that these resources will go some wayto help in this process of informed decision makingin this highly important and sensitive area.

The video prepared as part of the pack providesreal life stories concerning organ donation andtransplantation, and is intended to be used as ageneral introduction.

A glossary has been included covering the medicalterms used in this pack.

Anyone wishing to contact the local transplantco-ordinator or wanting further informationshould contact the Communications Directorate,NHS UK Transplant tel: (0117 975 7575).

Guidance for Teachers

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Transportation MilestonesTransplantation Milestones4/5

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OrganDonationTeaching Resource Pack

History of Transplantation

Aim

To create awareness of the history oftransplantation and its development to thepresent day.

About Transplantation

Organ donation and transplantation is the processof removing an organ from one person andimplanting it in another. The organ being removedmust be donated (‘gifted’). Following a transplantabout 2,700 people take on a new lease of life inthe UK every year.

Kidney transplants are the most commonlyperformed. Transplants are regularly carried outon the heart, liver, lungs and pancreas.

Tissue such as corneas, heart valves, skin, bone andtendons can also be donated and transplanted.

Today more than 5,500 people in the UK arewaiting for an organ transplant that could savetheir life or dramatically improve their quality oflife.

Transplants are one of the most miraculousachievements of modern medicine. However, theydepend on the generosity of donors and theirfamilies.

The increasing effectiveness of transplantationmeans that many more patients can beconsidered for treatment. More people also needa transplant, but there is a serious shortage ofdonor organs. For some people this meanswaiting, sometimes for years, and undergoingdifficult and stressful treatment. For all too manyit means they will die before a suitable organbecomes available.

Transplantation Milestones

1902 Alexis Carrel demonstrates method ofjoining blood vessels to make organtransplant feasible.

1905 First reported cornea transplant takesplace Olmutz, Moravia (now CzechRepublic).

1918 Blood transfusion becomes established.

1948 Foundation of the National Health Service.

1954 First kidney transplant operationperformed in USA.

1960 First successful living donor kidneytransplant performed in UK.

1963 First liver transplant.

1965 First kidney transplant in UK using organfrom a person who has died.

1967 First heart transplant operation performedby Dr Christian Barnard in South Africa.

1968 First heart transplant in UK.

1968 First liver transplant in UK.

1968 National Tissue Typing and ReferenceLaboratory (NTTRL) established atSouthmead Hospital, Bristol.

1971 Kidney donor card introduced in UK.

1972 National Organ Matching and DistributionService (NOMDS) founded in Bristol.

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1979 NTTRL and NOMDS merge to become UKTransplant Service.

1980s First transplant co-ordinators appointed.

1981 UK kidney donor card changed to multi-organ card including kidneys, corneas,heart, liver and pancreas.

1983 Launch of the UK Cornea TransplantService (CTS).

1983 First combined heart and lung transplantin UK.

1985 Lungs added to the UK donor card.

1986 First lung-only transplant in UK.

1986 Establishment of the Bristol Eye Bank.

1987 First ‘domino’ UK heart transplant, wherethe patient receiving a heart and lungtransplant donated their healthy heart toanother.

1989 Establishment of the Manchester Eye Bank.

1991 UK Transplant Service becomes specialhealth authority and is re-named UnitedKingdom Transplant Support ServiceAuthority (UKTSSA).

1994 NHS Organ Donor Register established.

1994 First living donor liver transplant in UK.

1995 First living donor lung lobe transplant in UK.

2000 NHS UK Transplant takes over from UKTSSA with new, extended remit.

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Transplant Laws in the UK

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Aims

• To make pupils aware of the presentlegislation governing organ donation andtransplantation.

• To consider potential changes in the law tofit in with a European context.

• To raise discussion on some moral issueswithin each position.

Legislation

Two key laws govern organ donation andtransplantation:

• The Human Tissue Act 1961;

• The Human Organ Transplants Act 1989.

The Human Tissue Act

The Human Tissue Act 1961 defines how anorgan and tissue donor is identified.

The Act states that if a person has expressed a wishin writing, or orally in the presence of two or morewitnesses during his or her last illness, that theirbody or any specified part may be used after deathfor therapeutic purposes or for medical educationor research, the person lawfully in possession oftheir body may, unless there is reason to believethe request was subsequently withdrawn, authoriseremoval from the body of any part, in accordancewith the request.

At present, a person must express their wish to bea donor in writing or verbally to two or morewitnesses. This system is commonly known as‘opt-in’. A person who wishes to ‘opt-in’ putshis/her name on the NHS Organ Donor Register,maintained by NHS UK Transplant. This is a national,confidential list of people who are willing to becomedonors after their death. It can be quickly accessedby transplant co-ordinators to see whether anindividual has expressed willingness to be anorgan donor.

If there is no evidence of such a wish, the personlawfully in possession of the body may stillauthorise the removal of any part from the body

provided that, after making reasonable enquiries,he/she has no reason to believe that the deceasedhad expressed an objection or that the survivingspouse or any surviving relative objects.

The Human Organ Transplants Act

The Human Organ Transplants Act 1989 makesany commercial dealings in human organs fortransplant a criminal offence.

It is also an offence to advertise the buying orselling of organs or to withhold informationrequired by law about transplant operations.The Act also makes it illegal to transplant anorgan removed from a living person unless thedonor and recipient are genetically related.

The legislation was accompanied by The HumanOrgan Transplants (Unrelated Persons) Regulations1989 which, subject to certain conditions, allowdonation between donors and recipients who arenot genetically related. This might include, amongstothers, partners, husbands and wives.

The Unrelated Live Transplant Regulatory Authority(ULTRA) was established by the 1989 Regulationsand its role is to be satisfied that certain conditionshave been met before transplants between personswho are not genetically related will be allowed.It is concerned to ensure that no payment orinducement has been made or offered, and that nopressure has been put on the donor. The Authoritywill also want to be certain that an independentdoctor (that is one not involved in the transplant)is satisfied that:

• no payment is involved;

• the case is being referred by the doctor withclinical responsibility for the donor;

• the donor is aware of the nature of theoperation and the risks involved;

• the donor’s consent was not obtained bycoercion or the offer of an inducement;

• the donor understands that he or she canwithdraw at any time before the operation.

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OrganDonationTeaching Resource Pack

Further information on the legislation isavailable from:

www.uktransplant.org.uk

Millions of people carry donor cards which indicatea willingness to donate organs in the event of death.Carrying a donor card has no legal validity anddoes not allow organs to be retrieved automatically.

When a donor card or register enrolment form issigned it is also very important that close relativesor those closest are informed of this decision.Even if a name is on the register or a card is carried,relatives are still consulted; so it is important thatthey can provide information about the donor’s

wishes. If the person who has died did not carry adonor card, or had not added their name to theNHS Organ Donor Register, their family will beasked what they think the person’s wishes wouldhave been.

No conditions can be made by the donor or theirfamily about who they want to receive any organsdonated. The organs are allocated to whoever isthe best match throughout the country.

Discussion point

Should people be able to attach conditions toorgan donation?

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CARD

Figure 1 – The Stages in Becoming a Donor

REGISTRATIONDISCUSSIONRE WISHES� �

It cannot be overstated that an individual mustcommunicate to their loved ones theirwillingness to donate organs in the event of theirdeath.

There are many who believe that it is time tochange the law from the ‘opt-in’ position.

Consider the various possibilities for discussion.

Compulsory Donation

Some would say that as the organs are of no useto an individual once dead, it should bemandatory that they are retrieved and used tosave the lives of others.

Discussion point

Is it right that healthy organs are buried in theground or cremated with the body if they couldbe transplanted?

‘Opt-Out’ (Presumed Consent)

Another argument put forward is that instead of‘opting-in’ an individual would ‘opt-out’, that issomeone’s organs would be retrievedautomatically unless he/she had indicated anunwillingness to donate organs after death.

There are two different forms of ‘opt-out’:

a. organs are retrieved regardless of the wishesof the family, unless the person hadregistered an objection (hard opt-out);

b. in the absence of any declaration from thedeceased, the issue of donation would bediscussed with the family (soft opt-out).

This is a very emotive subject, and bad publicityfrom families in such situations might affect theoverall attitude of the public to organ donationand transplantation.

International Comparison

Currently there are 14 European nations operatingunder a system of ‘presumed consent’.

AustriaBelgiumCzech RepublicFinlandFranceGreeceHungaryItalyLuxembourgPolandPortugalSlovak RepublicSpainSweden

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OrganDonationTeaching Resource Pack

Argentina, Brazil and Chile have transferred to thissystem as well. All of these nations have adoptedthe system of ‘presumed consent’ in the last30 years.

Some, like France and Belgium, operate a soft‘opt-out’ system, which requires that a reasonableeffort be made to determine the wishes of thedeceased (if not obvious) by conferring withfamily, friends or checking the register.

Required Request

This refers to a requirement for staff in intensivecare environments always to ask the family forpermission for organ donation when medicaltreatment has stopped and death has beenconfirmed by brain stem tests.

At present it is at the discretion of the medicalstaff whether to approach the family with arequest for organ donation. There may have beenoccasions when organ donation was notconsidered, and families were not approached,therefore denying them the right to make adecision about organ donation.

In the USA it is the law that a request for organdonation must be made, if appropriate, after death.

All of these issues relate to ‘cadaveric donation’, theretrieval of organs from someone who has died.There is clearly the potential for tension betweenfulfilling the wishes of the person who has died, andrespecting the feelings of the family, who have justlost a loved one.

Some organs can be donated by people who arestill alive, and living donation is discussed in thesection on kidney transplantation (page 16).

Tasks and Discussion points

• In your own words, state what the followingterms mean: Opt-In; Opt-Out (PresumedConsent); Soft Opt-Out; Hard Opt-Out;Compulsory Donation; and Required Request.

• Discuss with your group possible problemsassociated with each of these positions eg,some believe that if they carry an organ donorcard when admitted to intensive care, doctorswill not treat them as well as they might inorder to gain organs.

• Another problem to discuss is what rights doyou have as a ‘dead person’. Some believethat as you cease to exist, you have no rights.Others believe that you have the same rightsas when alive. What do you think?

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The Need for Transplants12/13

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OrganDonationTeaching Resource Pack

People need transplants for many reasons.The most common of these are:

• disease;

• genetic disorder;

• accident;

• alcohol/drug abuse.

So what can be done? What canbe transplanted?

ORGANS – kidneys, heart, lungs, liver,pancreas, small bowel

TISSUE – corneas, heart valves, bone,skin, connective tissue

• Heart and lungs need to be transplantedwithin 4-5 hours of removal from the donor.

• Ideally livers should be transplanted within9-10 hours of removal from the donor andkidneys within 24 hours of retrieval.

• Tissue can be stored in special banks forvarious times.

How is transplantation organised?When death has been confirmed in a patient whocould be considered as a potential organ donor,the local transplant co-ordinator is contacted.The transplant co-ordinator checks the history ofthe donor to confirm that there are no medical orsocial barriers to donation. The co-ordinator alsodiscusses the possibility of donation with the next ofkin.

All patients who are waiting for transplants areregistered on the National Transplant Database atNHS UK Transplant and a computer search ismade to find the most suitable patients for theorgans that have become available, a processknown as ‘matching’. Once the patients and theirlocations are identified, the doctors at thosetransplant units are alerted and asked to confirmacceptance of the organ. As they do so, thepreparation of their patient for the transplantoperation begins.

A team of specialists is called to the donor’s hospitalto carry out the surgery to remove and preservethe organs for transport to the transplant unit.If necessary, special transport arrangements, suchas an ambulance with a police escort or a charteredaeroplane, will be made to ensure no time is lost.

It can happen that when a donor’s organs areexamined, they are found to be affected by diseaseor damaged in some way which makes themunsuitable for use. This will mean that a waitingpatient’s hopes are dashed, and that their wait fora transplant must continue.

More information on the way transplantation isorganised is given in the section ‘TransplantationProcess’ on page 22.

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The Scottish Heart Transplant Unit was opened inDecember 1991 to provide heart transplantationservices for the people of Scotland. Those whoneed a combined heart and lung transplant mustgo to Newcastle for their operation.

The heart pumps blood around the body to feedthe cells with oxygen and nutrients.

Mr Andrew Murday, Transplant Consultant,Glasgow Royal Infirmary says:

“Each year in Scotland many thousands of peopledie from heart disease. A few of these can besaved by heart transplantation. Although most ofthe deaths from heart disease occur in olderpeople, it can affect all ages. Some babies are bornwith abnormal hearts, a few children andteenagers develop heart muscle weakness, and aspeople get older they can have heart attacks andsometimes abnormalities of the heart valves.

For the majority, these conditions are treated withpills or conventional operations. When thesetreatments are no longer an option, then hearttransplantation is sometimes all that is left.

Each year in the United Kingdom only about 200heart transplants are carried out. The number ofdonor hearts that become available limits thisnumber. The results are good. About 10 years afterheart transplantation, more than half will still bealive, which is much better than the outcome ifthe same severity of heart failure is managed withother forms of treatment. We also know that theprocedure dramatically improves people’s quality oflife.

Some time in the future we may be able to useartificial hearts, or perhaps even hearts developedby biological engineering. Until then, hearttransplantation will remain the only treatmentoption for a small but very sick group of people.”

HEART TRANSPLANTATION

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OrganDonationTeaching Resource Pack

The Scottish Liver Transplant Unit (SLTU) wasopened in November 1992 to provide livertransplantation services to the people of Scotland.

The liver is the largest organ in the body. It hasmany functions, the most important of which ismaking new proteins and processing wasteproducts.

Liver transplantation is done for two major reasons:

• To treat the symptoms of chronic liver diseasesuch as primary biliary cirrhosis.

• To increase the life span of a patient dyingfrom either acute or chronic liver failure.

In many people’s minds, liver disease is associatedwith alcohol-related problems. Scotland does havea reputation for ‘hard drinking’, but for manyyears this was not the major cause of liver disease– primary biliary cirrhosis was the most prevalent.However, recent analysis indicates that Hepatitis C(hepatitis caused by a virus) is becoming the morecommon reason for transplantation.

Drug abuse, too, can be a cause for liver failure,particularly an overdose of paracetamol.

There are many sensitivities and prejudicesamongst the public on these cases - they presentwhat we call ‘ethical dilemmas’. There will be anopportunity to discuss these issues further on.

Dr Ken Simpson is a liver transplantphysician at Edinburgh Royal Infirmary.This is how he describes his work:

“In general, physicians, as distinct from surgeons,treat patients with medicines rather than surgicaloperations. So we play no role in the technicalaspects of the liver transplant operation. Ourcontribution to the assessment of a patient is tocheck what has caused the patient’s liver diseaseand how bad the disease is, if there is anythingelse short of transplantation that can be done forthem, do they have any other diseases or conditionsthat may make liver transplantation difficult oreven dangerous? Following the operation wemonitor for complications such as rejection andinfection and treat them, if they occur, for thelifetime of the patient. Another important role is inthe education of the patient and their relativesabout liver disease and transplantation so theyare able to make an informed choice aboutwhether they would like the operation or not.Sometimes it can be very difficult telling a patientor their relatives that a transplant is inappropriate,as there is no alternative treatment, such asdialysis in the case of patients with renal disease.”

LIVER TRANSPLANTATION

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We have two kidneys situated just above the waisttowards the back, one on each side of the spine.

The kidneys are vital organs in our bodies andwhen they fail (renal failure) people suffertiredness, swelling, breathlessness, anaemia,anxiety and nausea. This in turn forces a completechange of lifestyle for the individual sufferers andtheir families. Many have to have dialysis. Thisartificially carries out the duties of a kidney incleansing the blood. This can be done either athome or hospital – usually three times a week for3-6 hour sessions.

Kidney Donors

There are two sources of kidneys fortransplant:

• from a person who has died usually havingsuffered brain death as a result of an injury orbrain haemorrhage;

• living kidney donation – usually from a familymember/partner.

Mr John Forsythe, a consultant transplantsurgeon, has this to say:

“I think those of us who work in the field oftransplantation are very lucky. I am a surgeon,and can say that the operations involved intransplantation are very different to any otherforms of surgery. Most of the time, surgeonsremove organs or parts of organs from the bodybecause they are diseased. In transplant surgery,we remove an organ from somebody who hasdonated it to a friend or relative, or fromsomebody who has died. We then transplant theorgan into another individual who is in desperateneed. The transformation is astounding. Quiteoften, I pass patients in the corridor two monthsafter their transplant surgery. It is only when theystop me that I recognise them, because they lookso different when they are healthy compared towhen they were sick.

Unfortunately, I also see people becoming very illand dying while waiting for a transplant. I knowthat a donated organ could save their lives.

Therefore I think it is very important that everyonewho is involved in the field of transplantationmakes an effort to let the general public know ofthe benefits of transplantation. I also know thatthe gift of donation at the time of tragedy canprovide some comfort for a family who are tryingto come to terms with losing someone they love.

It is also important to me that, if people have strongviews against organ donation or transplantation,these are known to their family. I would neverwant to remove an organ from someone who didnot want this to happen. We should provideinformation so that people can decide forthemselves.”

Mr Murat Akyol, a transplant surgeon for22 years, who currently works in theTransplant Unit at Edinburgh RoyalInfirmary, said this of his work:

“Performing a transplant is a gratifyingexperience, more so than any other surgicalprocedure, since it makes so much difference to apatient’s quality of life or is indeed life saving.

It is also a uniquely humbling experience knowingthat it relies on the courageous and generous giftof organs from a donor family.”

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KIDNEY TRANSPLANTATION

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OrganDonationTeaching Resource Pack

Living Donor Kidney Transplant

In Britain about 1,500 kidney transplants areperformed annually. The majority of these arefrom those who have been confirmed dead bybrain stem tests (see page 24). This occurs mostoften in hospital intensive care units and often asa result of spontaneous brain haemorrhage orafter a road traffic accident. These donors arecalled cadaveric donors. However, for many of thereasons studied already, there are too few kidneysavailable to help all those waiting on the list. Inthe future there will be more emphasis onincreasing the number of living donor kidneydonations to overcome this shortage.

In the 1990s living kidney donation in the UKaccounted for only 10% of kidney transplants.It now accounts for more than 20%. In livingdonation, kidneys for transplantation come fromliving relatives or close friends. Since the make-upof the body within families can be similar, or,more rarely as in the case of identical twins, thesame, there is a greater chance of a successfulkidney transplant if the kidney donated is from aliving relative. One of the most frequent concernsof potential living kidney donors is whether theloss of one kidney will hamper them in later life.A healthy person can live a completely normal lifewith only one kidney, lifestyle should not beaffected and normal work can continue.

Children/Young People andKidney TransplantsChildren and young people who have kidneyfailure receive priority for transplantation.

Like adults, children sometimes have to gothrough other treatments while they wait for atransplant. This is called DIALYSIS.

Dialysis is a way of removing wastes and excesswater from the body by using a filter.

There are two types of dialysis:

1 HAEMODIALYSIS

• Normally done in hospitals.

• Three times a week and lasts about 2-4 hours.

The patient’s blood flows through the artificialfilter by means of a machine. Needles (insertedinto a specially enlarged blood vessel called afistula, usually in the arm) take the blood to themachine and return it to the body.

2 PERITONEAL DIALYSIS

• Can be done at home, at work or if necessaryat school and on holidays.

• Done during the day or by a small machine atnight during sleep.

The peritoneal membrane is the lining of theabdomen surrounding and protecting many ofthe body’s internal organs. It has a very rich bloodsupply, making it an ideal area in which to carryout dialysis.

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Discussion point

Children/young people who are on dialysis,particularly haemodialysis, frequently missschool.

• What sort of problems do you think their highabsence rate causes to these children?

Once transplanted, children can come off dialysis,but they will have to stay on a certain amount ofdrugs for the remainder of their lives. Sometimesthere are initial side effects from the drugs such asweight gain or acne. If they stop taking the drugstheir bodies will reject the new organ.

Discussion points

• Why do you think young people might stoptaking their medication?

• How might the side effects of drugs make ayoung person feel?

• Is there anything the school communitycould do to help minimise the problemsfaced by these young people?

Ethnic MinoritiesIn the United Kingdom, the Asian, black Africanand black Caribbean populations have a high rateof diabetes and hypertension, diseases which canlead to organ failure. This means that Asian andblack African/Caribbean people are three timesmore likely to need a transplant. At present nearly400 black patients are waiting for a transplant;some of them are children.

When someone needs a kidney transplant, thedoctors have to try and match, as far as is possible,the tissue of the patient with the tissue of thedonor. The better the match, the better thelikelihood of a successful transplant and the betterthe chance of the patient getting a new lease oflife.

The reality is that it is more likely that a bettermatch will be found among donors from thesame population groups or ethnic groups. Thismakes it essential that there are people from allethnic groups registered as potential donors, andin particular from the Asian, black African/Caribbeancommunities.

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OrganDonationTeaching Resource Pack

What is tissue donation?

Blood is a type of tissue that can be donated overand over again to save many lives. However, bloodis not the only body tissue that can be donated.

Other tissue includes:

• skeletal bone;

• tendons;

• heart valves;

• bone marrow;

• skin;

• corneas.

The main differences betweenorgan and tissue donations are:

• Tissue can be obtained from people up to24 hours after their death.

• Tissue can be stored for much longer thanorgans. In fact tissue can be stored for up to10 years in some cases.

Tissue donation is probably the least wellknown type of donation, as ElizabethMelville, the tissue transplant co-ordinatorin Edinburgh, describes:

“A lot of people don’t know about tissuetransplant. It doesn’t grab the headlines likeorgan donation. But it’s not just organs that canbe donated after death to help others live betterlives. For example, if heart transplant is notpossible, the valves inside the heart can be usedto treat youngsters born with heart defects sothat they can run around and breath properly.Tendons from the legs can be used to treat peoplewith serious knee injuries so that they can walkagain. Skin can be used to save the lives of peoplewho have sustained severe burns and the corneascan be used to treat conditions or injuries thatcause blindness. Some people are uneasy aboutall of this – they think it’s a bit morbid. But wehave to look at the people whose lives are savedor substantially improved by these transplants.

It’s very important that people discuss their wishesabout donation with those close to them becauseit is the family who carry the responsibility forrevealing the wishes of their loved one afterdeath. It’s such a special gift, such a deeptenderness towards others at such a difficult time.It has been my privilege to witness this and thegratitude and joy of those, and their loved ones,whose lives are restored by it.”

TISSUE DONATION

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Statistics20/21

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In the UK during 2002:

• organs from 765 people who died were usedto save or dramatically improve many people’slives through 2,334 transplants;

• a further 2,214 people had their sight restored;

• living donor kidney transplants increased by4% (358 in 2001, 371 in 2002);

• the number of live kidney transplants doubledsince 1997.

Updated figures can be obtainedfrom www.uktransplant.org.uk

Discussion point

• How would you feel if you or someone you loved received a life saving organ?

More Facts

• 5,662 people are still actively waiting fortransplants.

• In the UK, 235 young people under the age of18 received a transplant in 2002.

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Transplantation Process22/23

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Waiting Time to Transplant

We are dealing with a national shortage oforgans. Patients must wait for an organ.Some will die waiting.

Remember, these are average times. It could beshorter or longer. The waiting time can be verystressful, as families and friends watch their lovedones deteriorate and suffer.

Does transplantation work?

Transplantation has been described as ‘one of thegreat success stories of the latter half of the 20thcentury’.

Transplants are now so successful that a year aftersurgery:

• 95% of kidneys in living donor transplants arefunctioning well;

• 86% of kidneys from people who have diedare still functioning well;

• 80% of the organs in liver and hearttransplants are still functioning well.

When can organs be retrieved?

Although half a million people die every year, themajority of these are conventional deaths: there isno heartbeat, breathing stops and soon all otherorgans die, including the brain.

Confirmation of death by brain stem tests is awell established criterion throughout the world.Organs can be retrieved following confirmation ofdeath by brain stem tests.

What is the brain stem?

The brain stem is located at the base of the brainand controls your breathing, blood pressure andother vital functions. Severe damage to the braincan cause the brain stem to die. This may becaused by an accident resulting in serious headinjuries or by a brain haemorrhage or stroke. Brainstem death is diagnosed after satisfying strictmedical pre-conditions. Two senior and experienceddoctors, not involved in transplantation, performfive simple tests. The tests are performed twice.

(see diagrams on next page)

Once death has been confirmed by brain stemtests and organ donation has been agreed, acommunication network is triggered, sometimesleading to consent for donation, but not always.

Average Waiting Times to Transplant – in Days

Organ Adults Children

Kidney 506 203

Heart 164 73

Lung 374 1,292

Heart/Lung 491 546

Liver 60 69

Number of cadaveric donors and transplants in theUK 1992-2001 and patients on the waiting list at31 December

7000

6000

5000

4000

3000

2000

1000

01992 1993 1994 1995 1996 1997 1998 1999 2000 2001

Year

Num

ber

Donors

Transplants

Waiting List

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Process To Transplantation

Brain Stem Tests

1 2

If consentgiven

Information toNHS UKT the organ

allocationorganisation

Transplantationof organs

Donor preparedfor theatre in

intensive care unit

Recipientscalled and

prepared in thetransplant centre

Retrieval team ofspecialists arrive

Organsremoved

1. The pupils are fixed anddilated and do not react tolight.

2. There is no eye movement.3. No ear reflexes.4. No pain response.5. No gag reflex.

3

4 5

Confirmationof death by two

independentdoctors

Request madefor organs

usually by atransplant co-ordinator

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So How are the Organs Allocated?‘I’ve heard people jump the queue if they areprivate patients.’

‘I’ve also heard people jump the queue if theyknow or are related to the consultants.’

There are many stories, rumours and confusedideas about the allocation of organs. This is whatactually happens.

Organ Allocation

The number of people needing organ transplantsin the UK is greater than the number available. Sothere has to be a system to ensure that allpatients are treated equally and that donatedorgans are allocated in a fair and unbiased way.

All patients who are waiting for a transplant areregistered on the NHS UK Transplant NationalTransplant Database. A computer programme isused to identify across the UK the best match andthe transplant unit to which the organ is to beoffered.

The system of allocation differs according to thetype of organ, whether it’s a heart, lung, kidney,liver or cornea, but there are some guidingprinciples.

Patients waiting for a heart or liver who areclassified as super urgent are given priority. This isbecause their life expectancy without a transplantcan be measured in days or even hours. If thereare no super urgent patients on the waiting list,the organ is offered to patients on the transplantlist who are nearest in age and blood group tothe donor. The location of donor and recipient isalso considered to minimise the delay betweenretrieving and transplanting organs.

Children are given priority for kidneys becausethey tend not to thrive on dialysis and may suffergrowth impairment. Organs donated fromchildren generally go to child patients to ensurethe best match in size but, when there are nosuitable child recipients, organs from youngpeople are given to adults.

When an organ becomes available anywhere inthe country, the duty office at NHS UK Transplantis notified immediately. Staff search the nationaldatabase to find out whether there are any superurgent cases, with blood group or age compatibility,in any of the transplant centres.

Sometimes there are no suitable patientsanywhere in the UK but a reciprocal arrangementwith the European Union enables donor organs tobe offered to other EU countries.

Role of NHS UK Transplant

The ethical dilemmas on page 39 demonstrateclearly how organ donation and transplantationpresent challenging moral dilemmas. Theallocation of organs is the responsibility of NHSUK Transplant, which was originally established in1991 and is directly accountable to all UK HealthMinisters.

The key role of NHS UKT is to ensure thatdonated organs are matched and allocated in afair and unbiased way. Matching, particularly inthe case of kidneys, is so important that donationand allocation need to be organised nationally.The larger the pool of organs, the better thelikelihood of a good match.

NHS UKT is in a unique position in that it doesnot have a direct relationship with patients anddoes not provide ‘hands on’ care.

Discussion point

• Why is this an advantage when allocating organs to recipients?

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What Does NHS UK Transplant Do?

NHS UK Transplant’s specific responsibilitiesinclude:

• managing the NHS Transplant Database whichincludes details of all potential donors andpatients who are waiting for, or who havereceived, a transplant;

• providing a 24-hour service for the matchingand allocation of donor organs and makingthe transport arrangements to get the organsto patients;

• maintaining the NHS Organ Donor Register;

• improving organ donation rates by fundinginitiatives in the wider NHS;

• contributing to the development ofperformance indicators, standards andprotocols which guide the work of organdonation and transplantation;

• acting as a central point for information ontransplant matters;

• providing central support to all transplantunits in the UK and Republic of Ireland;

• auditing and analysing the results of all organtransplants in the UK and Republic of Irelandto improve patient care;

• raising public awareness of the importance oforgan donation.

NHS Organ Donor Register

Besides telling family, relatives and friends of thedecision to donate organs, there is also theNational Organ Donor Register, held by NHS UKTransplant in Bristol. If someone wishes to donateorgans after their death they can add their nameto the Register. This enables doctors, nurses andtransplant co-ordinators to confirm an individual’swishes to the family, close relatives and closefriends.

It is interesting to note here that around 50-60%of families agree to organ donation when asked.It is very rare for families to refuse consent if theyknew that their loved one wanted to donate.

Scottish Context

Here in Scotland when organs become available,if there is no suitable match on the NHS UKTsuper urgent list, then the following process isfollowed:

• the heart is offered to the Scottish cardiactransplant co-ordinator based in Glasgow;

• the lungs are offered to the Newcastletransplant co-ordinator where Scottishpatients are transplanted;

• the liver is offered to the Scottish LiverTransplant Unit based in Edinburgh;

• the kidneys are allocated by the best tissuematch in the country. If there is an equal match,factors such as age etc are taken into account.

A Day in the Life of a TransplantCo-ordinator

The role of the transplant co-ordinator isimportant in the process of donation andtransplantation. Here is a fairly typical accountfrom Jen Lumsdaine a transplant co-ordinatorworking in Edinburgh.

“Transplant co-ordinators organise the transplantprocess. There are two different types – donortransplant co-ordinators are responsible for thecare of a patient who has died, speaking to thefamily and organising the organ donationprocess. Recipient transplant co-ordinators areinvolved in assessing patients for the transplantwaiting list, organising the transplant operationand follow-up. Most transplant co-ordinators areregistered nurses.

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In Scotland, there are recipient transplantco-ordinators for liver and heart transplants.In some units, the donor transplant co-ordinatorhas a dual role – also working as a kidney recipienttransplant co-ordinator. I work in a team of four,and this is a description of some of our work.

08.30 hrs: Kidney Transplant Unit ward round.This involves the multi-disciplinary team thatincludes surgeons, physicians, nurses, dieticians,pharmacists and transplant co-ordinators.Each patient on the ward is reviewed and theirprogress, including blood results and anti-rejectionmedication are discussed with the patient. Todaywe have admitted a mother and son, in preparationfor a live kidney donor transplant tomorrow.The mother has undergone six months of testingto prove she is very healthy, with two well-functioningkidneys. Final tests today will give the go aheadfor tomorrow. The other patient being reviewed isa 35-year-old man who had been waiting for atransplant for six years, and finally received a calltwo weeks ago. The transplant was successful andhe is waiting to go home. During the ward roundhe asks if he can write a letter to the family of thedonor to thank them for this gift.

09.30 hrs: Following the ward round, I attendto some of the paperwork involved from thetransplant yesterday. It is important that all thelegal documents are completed and sent to NHSUK Transplant.

11.00 hrs: Education is a significant part of thetransplant co-ordinator’s role. Today I amspeaking to a group of medical students aboutbrain stem death and organ donation. All healthprofessionals are involved in transplantation, andfor new doctors and nurses it is important theyare taught how to approach bereaved familiesand discuss organ and tissue donation.

12.00 hrs: The hospital media department hascontacted the transplant co-ordinators asking forinformation and volunteer patients to talk to thepress about transplantation. Most of thetransplant recipients are willing to do this –without organ donors they would not havereceived a transplant, and it is important tohighlight this to the public. We set up aninterview with one lady who is entering theTransplant Games this year – an Olympic-typeevent for organ recipients.

13.30 hrs: Transplant Assessment Clinic:Patients who are reaching end-stage organ failureattend this clinic to review their suitability for atransplant. This involves an in-depth discussionand examination by the transplant surgeon, andinformation from the transplant co-ordinatorconcerning life on the transplant list, theoperation and the care following a transplant.

15.00 hrs: Whilst in clinic I am called by ananaesthetist from one of our local intensive careunits. They have just performed the first set ofbrain stem death tests on a 28-year-old man whohad been in an accident. As the first set of testshad shown the man to be brain stem dead, theyasked if I would attend the unit to discuss organdonation with the family following the second setof tests. Already the family had mentioned thatthe man had carried an organ donor card andhad discussed his wishes with them.

I leave the hospital immediately, to drive 50 milesto the hospital. On arrival, the anaesthetist tellsme the second set of tests have been completed,confirming brain stem death. The family arewilling to speak to me.

16.30 hrs: Along with the nurse who has beencaring for the patient, I discuss with his family theoffer to donate his organs. This is perhaps themost important part of my role and I assure thefamily that the operation is performed withdignity and respect by the transplant team whowill attend the hospital. We have a detaileddiscussion concerning which organs will bedonated, his past medical history and the follow-up we provide.

17.30 hrs: The next two hours are spentgathering information about the potential organdonor, taking blood for tissue-typing and viruschecking, and supporting the family. When all theinformation is complete, I contact NHS UKTransplant, a special health authority based inBristol. The duty office will take details and informwhich transplant centres in the UK to contact fororgan allocation. NHS UK Transplant holds thenames of everyone in the UK who is waiting for atransplant. The system in place can immediatelywork out which centre or patient should beoffered an organ. As there are no super-urgentpatients (those patients who are so ill they need atransplant within 72 hours), I can call the liver

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team in Edinburgh and the heart team inGlasgow to offer a life-saving transplant tosomeone in Scotland.

19.30 hrs: Having spoken to the recipienttransplant co-ordinators for the liver and heartteams, they are organising for their transplantteams to come to the hospital to remove the liver,kidneys and pancreas, heart and lungs. The familyalso kindly agreed to corneal (eyes) and tendondonation, so I contact the tissue co-ordinator whowill arrange for an ophthalmologist (eye surgeon)and orthopaedic surgeon to come to theoperating theatre.

21.00 hrs: The family are saying goodbye tothe patient, and we have arranged to meet thenext morning when the operation will becompleted and they can visit him in the Chapel ofRest in the mortuary. This is a very difficult time,and as a transplant co-ordinator I am alwaysaware that it is due to the kindness of families at atime of acute grief that transplantation canproceed.

21.30 hrs: The donor is still on a ventilator,which provides oxygen to the organs. Theanaesthetist and operating theatre assistant arrivein the intensive care unit to transfer him totheatre. The operation can take from 6-8 hours,and is performed under sterile conditions like anyother operation. The organs are perfused with aspecial preservation fluid, as they will not have ablood supply until transplanted. The heart andlungs are quickly transferred, as the recipients arealready in another hospital waiting and they mustbe transplanted within 4 hours. The liver andpancreas are transplanted within 12 hours. Thekidneys are allocated by the best tissue match,and are usually transplanted within 24 hours.

03.30 hrs: The surgeons have finished theoperation, and along with the theatre staff weperform ‘last offices’. This involves washing anddressing the donor, in preparation for transfer tothe mortuary.

04.30 hrs: One of the kidneys has beenallocated to a local patient, and I telephone thesurgeon, kidney doctor and transplant unit. At 05:00hrs I phone the recipient, who has been waitingfor 3 years for a transplant and ask him to comeinto hospital. It has been an emotional day.

10.00 hrs: I meet with the family of thegentleman who died, and take them to themortuary to view the body. We talk briefly aboutwhich organs have been donated, but this is atime for their grief. I will write or visit soon, givingthem information about all the people whoreceived a transplant today.”

There are many different people involved in thetransplant process, and all work with theawareness that a grieving family has given theirpermission at a very difficult time. In one day,some of the people involved included:

Consultant Anaesthetist NHS UK TransplantIntensive Care Nurses Anaesthetist Physiotherapists Theatre Staff Procurator Fiscal Transplant SurgeonsLaboratory Staff Perfusionists/NursesTissue Typist Tissue Co-ordinatorsRecipient Transplant Ophthalmologist Co-ordinators Orthopaedic Surgeon

Discussion points

• What do you notice about Jen’s typical day?

• What does Jen regard as the most importantpart of her role? What are her reasons?

• Jen knows there is a potential organ donor.Describe the process she follows from consentto transplantation.

• What do you think would have been the mostemotional or moving times in her day?

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Donor/Recipient Stories

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Story 1

Peggy Murray is the wife of a liver transplantpatient. She has written this story, recording herthoughts, fears and joy. Read the story.

Call at midnight:Our experience of transplant –Peggy Murray

“I remember that Sunday in January as an awfulday. I stood at the bedroom window looking atthe trees blowing and creaking, a dirty long streakof loose polythene entwined itself round thetelegraph wires in a mad dance. The sky wasalmost black. It all just seemed to sum up misery.He was silent in bed in the room behind me andfar from well. All he ever said was ‘I’m fine’.He had had another fall and there was a purplebruise down the side of his face. It had been astruggle to lift him back up and we managed onlywith a chair placed against the table and a seriesof slow hauls and pushes. Later, as the heavensopened and rain poured down on the dispiritingscene outside, I remember thinking this is just theend. Pathetic fallacy it is called, in plays like ‘KingLear’ and it seemed very apposite to me. I did notthink he would survive until the operation.

He had by now been on the waiting list for a livertransplant for only 4 days. First, there had beenmonths of tests and assessments, in and out ofhospital. On the last Wednesday he had at lastbeen put on the waiting list officially and given ableeper so that he could be alerted at any time ofthe possibility of an operation. At his interview asI sat beside him, the lady co-ordinator laid outvery clearly the pros and cons and conditions.I knew he had no real option – it was theoperation or nothing. Nothing meant just thecontinuation of the slow and awful decline of thepast months. At the interview he was in such astate of confusion and toxicity that I fear verylittle of what was said stayed with him. Onlysomeone who knew him well might be aware ofthat. His responses as usual were highly sociallyappropriate, though shorter than they would havebeen once. That day we left with instructions tohave the bleeper with us at all times. He was toavoid infection and report any that occurred, todrink lots of water and exercise daily.

And now it was Sunday and his yellow facelooked up blankly from the bed as he respondedonce again that he was fine and feeling better. Hehad kept (or been kept) rigidly to his regime ofpills but they were clearly not going to be enough.As well as falling and being increasingly unsteady,his memory had got so much worse. This madelife one of continual vigilance. Determined as everto help, he would go to the freezer to get someitem out for tea time and later I would find manyother melting packets left on the adjoining shelfor on the floor. His ability to write deteriorated andI would find him trying to practise his signature,although he no longer wrote anything. Phonecalls had to be monitored in case importantmessages were forgotten. Cooker and water tapshad to be checked, and when he was fit to walk,he had to be kept within sight if we were out,because if he turned a corner he might get lost.

The awful Sunday passed and Monday dawned -another blustery day. He got up late and wantedto read his papers and have his breakfast, but hesoon was tired and went back to bed. A friendcalled to see him, but he was then sound asleepand there seemed little point in waking him to taxhim with trying to chat. The friend left with a verygrave face.

He got up later briefly, but nearly fell over again,and it was a relief when he wanted to go back tobed to rest. ‘Fine, but a little tired’ he said.No complaints, very little speech.

It was 10 minutes to midnight and I wascompleting the nightly rituals of letting the dogout and locking up when the phone rang.Strangely I answered it with no thought otherthan that it was one of the many relatives whokindly kept in touch and rang at all hours toenquire. A warm and calm voice, but anunfamiliar one, told me that there was apossibility that they had a liver match for him,and could I get him in to hospital to be ready foran operation in the morning? He was to havenothing more to eat or drink in the meantime.

I wakened him and got him in to his dressing gown,still full of sleep, but pleased enough to do as hewas asked. Soon the ambulance was there, althoughI had been warned that as a ‘non-urgent’ case wemight have two hours to wait. The run-up

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through the sleeping streets of Edinburgh and thepark was another chance to appreciate the careand professionalism of the ambulance attendants,one driving while the other kept patient andpassenger relaxed and comfortable. They wheeledhim through the darkened hospital corridors andup in the lift to the Unit, leaving us only when awaiting nurse and doctor there took over. Overthe next 2 hours the nurse and doctor wentthrough all the preliminaries with greatthoroughness as I sat by him and replied for himin some measure, occasionally having to correcthis recollections or information, although in somestrange way the occasion appeared to have jolteda rather better level of functioning than he hadrecently shown. Heart, blood pressure, blood testswere all systematically taken as the clock movedon through the witching hours and the rest of theUnit – and the city – slept.

About 3 o’clock all was in readiness and he waswheeled away to a bed in the ward. I was free toleave or take the kind offer of a bed for the nightin the relatives’ room. Mindful of my caninehousemate, and feeling that it was probablyeasier to face the next day at home, I made myway through the dark and silent corridors oncemore, out of the A & E exit and to the taxi rankacross the road.

Next morning I learned that the operation wasindeed to go ahead and from 10.30am he wouldbe in the theatre. Phone calls to alert the rest ofthe family and close friends took up part of theday, and it passed, as even the slowest of daysdo, until at 6.30pm there was a call from thesurgeon in charge to say it had all gone well.He had been ‘healthy’ all through and he wasnow in Intensive Care.

When his offspring and I saw him next day inIntensive Care the first thing we noticed was thechange to a pinkish tinge in his skin colour.A lovely Canadian nurse – Maggie – was lookingafter him and he had, she said, been singing aHebridean song to her. He had no recollection ofan operation and thought it might still be to come.The change in his looks was dramatic and alreadyhe was taking a bit of interest in the world around.

The next few weeks were a bit rocky, withcomplications from infection and a ratherembarrassing couple of days of confusion andagitation. In public he would have committed abreach of the peace. In his delirium he was backat work and laying down the law – in every sense– to the ward staff and patients. They must havefound it, in every sense, a sore trial! But thatpassed and slowly but surely physical recoverybegan. The work of the physiotherapists andoccupational therapists helped this along andeven when the added diagnosis of diabetes had tobe faced things never looked so bleak again.

The grey and faltering figure who was helpedhome after 7 weeks was, however, only beginningon the long road to fitness. My sister came fromhalf-way around the world to help in the firstcrucial weeks and the hospital back-up with adviceand equipment made it feel that we were notfacing this alone. The continuing daily care andcounsel of the district nurses helped incalculably.

Six months along the line, with clinic check-upsbecoming encouragingly fewer and levels ofmedication lessening, progress has becomesteadier and faster. Walking has improved and hisself-help skills are completely restored. All the aidsso thoughtfully supplied are no longer needed andhe took great delight in storing them personally inthe garage for collection as soon as that waspossible. Most cheering progress is exemplified bythe return of his writing ability. He will now writea perfectly legible note – with spelling intact andgrammar correct. He added a few notes to thisaccount which I have included. He remembersalmost everything. He can cook and mow thelawn – and he knows what we have to put on thegrocery list. He tells the most awful jokes onceagain. While these may seem trivial, they are notto us – or anyone who has had to deal with theenveloping fog caused by this type of liver disease.He has been able to enjoy two brief breaks awayfrom home among familiar and delighted relatives.

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He has, truly, a new lease of life. He is restored tobeing the cheery fellow we used to know, able toenjoy the pleasures of home and neighbourhoodand especially the delights of the growinggrandchildren of whom he was scarcely awarelast year. And if he has a life back, that makestwo of us.

We have much to thank everyone for – the surgical,medical and nursing staffs and all relatives andfriends, our church members, and all of the manyfaiths who remembered him in prayer groups andindividually, our National Health Service, withinwhich we indeed got signal advice.

There is – there was – someone who has to bethanked and that person is one I have not yetmentioned throughout this account of amarathon sojourn. I do not know this person’sname or even if he is male or she is female,

although I suppose the former. I only know theperson’s blood group and that his liver was of asuitable size. I also know that without his donation,without his thought for another, I would not bewriting this story of a life leased back. So, thankyou from all of us Mr Unknown Donor, andthanks to your family who at the saddest of timesthought of others and ensured a second chancefor a stranger.’

Discussion points

• How did you feel when you read Peggy’sstory?

• Liver transplantation is life-saving. Peggy alsosaid ‘after 10 years of illness I got myhusband back’. What do you think Peggywould say about organ donation?

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Story 2 – Euan Abel (8 years old)

Euan was 8 years old when he died after sufferingsevere head injuries in an accident. Read over hisstory.

An 8-year-old Scottish boy has died after fallingdown a lift shaft in a hotel in a French ski resort.

The screams of Euan Abel, were heard by his sisterHeather, 14. Dr Graeme Abel, the boy’s father,spoke of his family’s grief and said he hoped hisson’s organs would help save other children.The family was with a party of 26 friends, including14 children, all from Scotland, for a skiing holidayin a popular resort.

Dr Abel said: “The one positive thing that hascome from this is that because Euan was able toget to hospital, he was able to donate his heart,both kidneys, his pancreas and both lobes of hisliver for others. That will probably have helped sixchildren who might otherwise have died”. His son’sorgans were donated through the Europeantransplant network. “We have lots of anger yet tocome, but hopefully his heart is still beatingsomewhere in some other child who has beenseverely ill. Euan was always a very generous boy.This was something else he was able to give.”

Dr Abel said: “Euan and his sister Heather hadgot up early to see off some friends who weregoing home on an earlier flight. They took the liftup to the next floor, and when they got out intothe lobby it was in darkness because the lightswere on saver-switches. Heather went across topush the time-switch and Euan turned right intowhat he thought was a corridor. It was anotherlift shaft. The lift had got stuck between floors inthe night, and the fire brigade had rescued theoccupants. For some reason the lift doors hadbeen left open. Euan just went straight down.”

Heather ran to get her parents. Graeme Abel ranto the ground floor and, with the help of a friend,was able to force the lift doors and climb into theshaft. He said: “I carried Euan out. He wasunconscious and dying. He had emergencysurgery for a ruptured spleen, but we knew hehad very severe head injuries, and over the next48 hours it became obvious he wasn’t going tosurvive them.”

Discussion points

• Why do you think Euan’s parents donated hisorgans? Do you think it would be an easydecision?

• Do you feel the donation of Euan’s organswould help the family in any way?

• It is likely that at least six children’s lives weresaved as a result of Euan’s death. How do youthink the parents of those children would feel?

• What do you think of Euan’s parents?

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Story 3 – ‘Heart Operation Athlete’sTribute to Family of Saviour’Reg Chisholm had a heart transplant in 1999. Readhis story which was printed in a Scottish newspaper.

“A top athlete who had a heart transplant hasdedicated his medal haul to the man who savedhis life. Reg Chisholm returned from the EuropeanHeart and Lung Transplant Games as Scotland’snumber one. And he has given thanks to thefamily of the man who allowed him to live again.

He said ‘I know nothing about him, but I willforever be grateful they allowed me to have hisheart.’ Looking at the 2 golds, silver and a bronzehe brought back from the Games in Austria, headmitted the donor was in his thoughts.

He said ‘He was always in the back of my mind,whoever he was. These medals are my tribute tohim.’ Reg, 48, had a massive heart attack whenhe was 45. He was told he needed a transplant orhe would die, and days later a donor was found.In December 1999 the dad of three was under theknife at Glasgow Royal Infirmary. It was the start of anew life for the Dunbar-based ScottishPower worker.

He said ‘I thought, this man didn’t have the chanceto live on, so I should try to keep his heart in topcondition’. The former Dunbar Rugby Club forwardwon the 21km veterans’ cycle race, then gold inthe biathlon, silver in the 1,500 metres and bronzehelping the Spanish team in the 4 x 100 metres relay.

He added ‘It’s a dream come true. I can hardlybelieve it. I wanted to do it for myself, my wifeNorma, and my sons and grandkids. But aboveall I wanted to do it for that man who didn’t havethe chance. I also wanted to thank his family’.”

Discussion points

Reg said of the donor:

“I know nothing about him, but I will be forevergrateful they allowed me to have his heart.”

• Discuss in your group whether you think therecipient should know anything about thedonor. Should the donor’s family know whothe recipients are? Can you see anydifficulties in these situations?

• Discuss how Reg’s heart transplant wouldalso be good news for his family.

Story 4 – Donor Family

Rebecca Nix, 21, died in a car crash in America.Yet as her mother Jane explains in this emotionalletter, her only daughter’s childhood pledge hasgiven dozens of other people renewed hope.

“Dear Rebecca,

You were a gentle, caring child, always puttingothers first. So it came as no surprise when youannounced you wanted to be an organ donor.You were only 7, and I can remember how seriousyou looked pushing the consent form into my hand.There’d been a talk at school, and your mind wasmade up. I talked it through with your dad, bothof us touched by your determination. It was sucha strange request for a child, but so like you. Wesigned the form.

As you grew up your donor card stayed in yourpurse getting tattier as the years passed. You evenhad to update it. I never gave it another thought,to be honest. Not until that fateful Novembernight in 1996. You’d been working as an au pairin America for 8 months, looking after 3 smallboys. I was wrapping presents when the phonerang. I answered it, imagining your chirpy voice.But it was your friend Donna. She sounded tearful,struggled to get the words out. ‘There’s been acar crash,’ she said ‘Becky’s dead’. I dropped thephone, screaming. After 10 minutes of sobbing,I rang your dad on his mobile. ‘Rebecca’s dead,’I blurted. ‘Please drive home safely.’

Sitting alone, my mind played back our lastconversation. You told me all about the new greysweatshirt you’d bought. Before you rang off yousaid, ‘I love you mum.’ Now I’d never hear thosewords again. I hugged your dad when he arrivedhome, ashen-faced and speechless. We were toochoked to speak.

The night wore on. A call from a doctor at theHartford Hospital in Connecticut filled in the gapsabout the accident. You were driving to meet theschool bus and crashed head-on into another car.You’d died instantly, he said. You hadn’t suffered.That was a comfort.

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We couldn’t sleep, lost in grief. Then a strangething happened. An image of your red-and-blackdonor card sprang into my mind. I jumped up, mythoughts racing. Did she have it on her? Do thedoctors know about it? It was like you werepropelling me forwards. Your dad dialled thehospital. He didn’t mince his words. ‘Take whateveryou can from Rebecca,’ he said. We were toldyour heart, lungs and liver couldn’t be usedbecause they’d been starved of oxygen. But therewas hope other parts could be transplanted. Thenurse thanked us and promised she’d be in touch.A wave of relief flooded over me. The next day welearnt surgeons had removed your eyes, heartvalves, sections of your skin and bones. At leastyou were coming home to us.

Three days later I went to see you in the chapel ofrest near our Birmingham home. You were wearingthe American sweatshirt you’d told me about,you looked as if you were sleeping. I slipped yourfavourite brown lipstick in beside you, togetherwith your Winnie The Pooh gloves. ‘You’re still mylittle girl,’ I whispered. ‘You always will be.’

A month after your death the first letter came.Your corneas had restored the sight of a 24-year-old man and a 41-year-old woman. We cried.Your skin had been grafted onto children sufferingsevere burns. Your heart valves were given to twomen, while your bones were used to replacediseased tissue in dozens of patients.

A total of 74 people were helped by you. So evenin death you reached out to others. Our grief isstill raw, and it would be too painful to contactany of them, but the hospital has told us everysingle one wanted to pass on their thanks for yourspecial gift. I think every bereaved parent has anoverwhelming fear their child will be forgotten.But we know that will never happen to you,Rebecca. It’s such a comfort to know you’ve givenso many people a better life. I’m so proud of youin death as I was during your all-too-shortlifetime.

Your mum, Jane Nix”

Story 5 – A Decision not toProceed

The Transplant Co-ordinator was called to theIntensive Care Unit (ITU) to speak to the parentsof a 17-year-old male who had been declareddead following brain stem tests as a result of aroad traffic accident. He had just passed hisdriving test and his parents had helped him buythe car. He was brought into the Accident andEmergency and later was transferred to the ITUwhere he was in a coma, attached to a lifesupport machine in a critical condition with littlehope of survival. When it became apparent thatnothing further could be done for this patient thefamily were informed and the doctors explainedthat they were going to perform brain stem deathtests. The doctors went on to test the patient’sbrain stem function and along with the scan ofhis brain found that he had suffered irreversibledamage to his brain stem. When two sets of brainstem tests were completed and confirmed thatthe patient was dead this was then explained tothe parents and then they were asked if theywould like to discuss the option of organ donationas their son had carried an organ donor card.When the transplant co-ordinator spoke to theparents they were aware that their son hadcarried a donor card but felt unable to agree.

Discussion points

• Why do you think the parents decided notto proceed?

• Should the health care professionals have asked why the parents felt unable to agree?

• What about the rights of the patient?

• Is the donor card legal and binding?

• Can anyone give consent for someone who has died?

• If organ donation proceeded how might this affect the transplant programme?

• Do the laws in other parts of Europe work more effectively or are they ineffective?

OrganDonationTeaching Resource Pack

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Story 6 – The Story by Joyce“In June 1999 I had a kidney removed due topolycystic kidneys and began haemodialysis. Bothsisters offered me a kidney and a meeting wasarranged with the transplant surgeon and theco-ordinator. Information about the procedure wasgiven honestly, making it clear that the donorunderwent a more painful operation than therecipient and all the risks involved. Havingdiscussed the benefits for me within the wholefamily, it was decided to go ahead to see ifElizabeth was compatible.

Life on dialysis was limiting but I was lucky andkept well, managing to hold down a part-time jobas a teacher. My family were very supportive andtook on many new roles than they had previously,as I attended haemodialysis three times weekly.

When Elizabeth came up for the 2 days of pre-transplant tests, I was swaying from being verypositive and keen, to being worried and upset.Elizabeth was planning to undergo major surgeryfor me with no benefit to herself, other thanhopefully seeing me enjoy a normal life again.This was brought out in the open and shereassured me that she did not feel pressurised orobliged to go ahead. When the results camethrough we were given a date for July andplanning began in earnest. Children and pets hadto be taken care of and it was important thatarrangements were flexible.

I was admitted 2 days before the operation andunderwent routine checks. Elizabeth was admittedthe next day. I had my final dialysis that eveningand returned to the unit to find both families andour dad there. It was a tense evening and afterthe visitors went away, Elizabeth and I did ajigsaw in the day room until 12.30am, putting offthe moment of going to bed and being left withour thoughts.

On the morning of the operation we were bothup early, showered and Elizabeth went to theoperating theatre about half an hour before me.The next thing I knew was waking up and myhusband being by my bed and it was all over.Elizabeth was opposite me in the High DependencyUnit and once we were both awake and hadreassured each other we felt ‘great’, there wasamazing relief and hilarity that the operation wasbehind us.

The next day I got up with the help of the physioand really felt great, but was concerned thatElizabeth was obviously in discomfort and sleepinga lot. The staff were fabulous and assured methat this was the normal pattern, the donorinitially taking longer to recover. It took another3 days for Elizabeth to return to her usual selfand after that there was no stopping her.

I was also discharged after a week and initiallyattended hospital every few days for blood tests.

Life is so different for me!!

I have a new found energy, can eat a much largervariety of foods, can drink lots of fluids, havemuch more time to myself – and really am a newperson. All thanks go to my sister Elizabeth andthe team of people in the Transplant Unit.”

Living Donation

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OrganDonationTeaching Resource Pack

Story 7 – The Story by Elizabeth“When my sister Joyce was told she had kidneyfailure, I cannot remember actually making thedecision about asking to be considered as adonor, I just knew it was what I wanted to do. Myhusband and children were completely supportive.I think that this is vital to the whole process,because it inevitably involves you all.

My younger sister was also keen to be considered.So we told Joyce, and a meeting was arrangedwith the transplant surgeon and transplantco-ordinator.

One of my main impressions of this time was thatmuch of the information given seemed to bepointing towards the more negative aspects ofwhat might happen, despite the superb successrates. This was to ensure that the donor was asclear as possible about what was involved andthat the offer was made with no pressure fromany quarter. When it became clear that I wascompatible and my general health was good, a2-day admission to hospital was arranged for aseries of more specific tests. This was my first visitto hospital, excluding the birth of our children,but any apprehension was soon dispelled by thesupportive attitude of all staff. The tests consistedof blood tests, blood pressure, a chest X-ray, anultrasound scan and a renal angiogram. I actuallyquite enjoyed the experience!

This was also a very important point in the wholeprocess. It was during this time that I realised howcomplex Joyce’s feelings were about what washappening to us all. It was a very emotional timefor her. As far as she was concerned, it wasbecause of her that I was in hospital – despite thefact that the tests themselves were straightforwardand far from dreadful. It highlights the fact thatthis is something the recipient cannot repay andhow difficult it can be to accept this. Personally, Ithink it is probably easier to be a donor. The goodpart of this was that it provided an opportunity toreaffirm our feelings and remain very positiveabout continuing.

Much to our delight, the results showed that mygeneral health was good and I had 2 wellfunctioning kidneys. Reality strikes! Dates were putinto place and arrangements made. As a teacher,I am fortunate to have a long break in the summerand it was arranged that this was when theoperations would take place. This was at ourrequest, and another example of how well wewere looked after.

The day before the transplant was scheduled, I wasadmitted into the Transplant Unit. ‘Unit’ is anexcellent description of the place. Every person,without exception, works as part of the team toprovide a service second to none. The atmosphereis so positive and caring that it helps to dispel theinevitable apprehensions. The night before thetransplant was most peculiar. It is very comfortingto be in hospital with someone you know so welland this helped me in many ways. Our familiesvisited and it was a time of mixed emotions.Everyone is affected by what is happening. It isnot just the donor and recipient. When Joyce andI did eventually go to bed, it was with hope andexpectation.

Early the next morning I was prepared to go totheatre first, and Joyce soon after. The operationstake place in a specially designed twin theatre.The faces I saw on the ward, on the way to theatreand in the anaesthetic room were familiar. All hadintroduced themselves previously, which is sohelpful when the surroundings are unfamiliar.The operations are carefully planned withconsultant transplant surgeons leading the twoteams. After the kidney is removed, it is transferredto the adjoining theatre to be transplanted.

When I woke up on the High Dependency WardJoyce was opposite and we seemed to come roundabout the same time. We both reassured eachother that all was well. What a wonderful feeling!Everyone on the ward helped to make sure thateverything was done to make us as comfortableas possible. When our families visited later in theday there was so much joy and laughter. Now wehad to hope that the kidney would do its job andmake Joyce feel better than she had been in along time.

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The next few days were filled with a variety ofchecks such as blood tests, urine counts and fluidintake. The physiotherapist was on hand to makesure mobility returned as quickly as possible. Myrecovery was made so much easier by the signsthat the kidney was doing its job. Joyce wasfeeling good! I will never forget her euphoria onthe morning of the second day when she noticedthat the whites of her eyes were no longer yellow,but clear white – a very positive sign.

Things continued to go well and after a week inthe Unit I was allowed home. A follow-up, 6 weeksafter the operation, ensures that blood and urinetests have returned to normal. It is also made veryclear that if anything crops up at home whichcauses concern, there is always someone availableat the Transplant Unit to answer questions andprovide support.

Being a kidney donor is a unique experience thatnot everyone who wishes to has the opportunityto take. I was fortunate to be able to do this andwould encourage others to do so as well.Personally I feel richer as a result of the wholeexperience and through meeting so many specialpeople.”

Discussion points

• What fears do you think Elizabeth and Joycewould have about living donation?

• Imagine you are in the position of being ableto donate your kidney. How would you feelabout it?

• Do you think daughters/sons should beallowed to donate their kidneys to a parent?Can you see any obstacles?

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Ethical Dilemmas

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Ethical Dilemmas

Organ transplantation is not just a part of medicalhistory. Today it has become a moral and majorethical challenge: to whom shall we give theseorgans when there are so few available?

Patients are waiting longer than ever to receiveorgan transplants in Scotland because of a lack ofdonors. A decade ago a large proportion ofdonated organs came from car crash victims.However, this source of organs has loweredconsiderably for the following good reasons:

• better road safety programmes;

• effective drink-driving campaigns;

• traffic calming measures eg, speed bumps;

• compulsory use of seat belts;

• advances in medical treatment and care.

As a result, the number of organs had been fallingby about 3% every year. Though this trend hasnow been halted, the number of people in needof a transplant is increasing by the same level.This discrepancy in supply and demand gives riseto many ethical dilemmas about recipients.

Here are some of the issues peoplediscuss and that the medical worldfaces.

Discuss in class these situations:

1. Robert has died and he carries adonor card and has signed the NHSOrgan Donor Register. The transplantco-ordinator approaches Robert’s wife,and she says ‘no’.

What is the right thing to do?Do you follow Robert’s wishes or his wife’s?

2. Michael is suffering from chronicliver disease, caused by alcohol-related problems. Without atransplant he will die. Michael isknown to be a very heavy drinker.

Should Michael be given a liver transplant?Should he be given another chance?Would there be any conditions?

3. Kate is 17 years old. Her mum has aserious kidney disease and has beenon dialysis for over 2 years. Kate,distressed by her mum’s suffering,offers to donate her kidney to hermum. They approach the transplantco-ordinator and surgeons to discussthis possibility.

What do you think the professionals’response to this offer would/should be?

4. What if in Scotland there was an‘opt-out’ system rather than ‘opt-in’.

Should a person who has ‘opted-out’, andclearly indicated his refusal to donateorgans, be entitled to receive an organ inorder to save his or her life?

5. What about smokers?

Should they have as equal a chance asothers to receive a life-saving organ?

6. A convicted killer imprisoned inScotland requires a heart transplantand after several months on the list,he receives a heart transplant.

How do you feel about this? How do youthink the donor would have felt?

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OrganDonationTeaching Resource Pack

7. America is moving closer to allowingpayment for organ donation. Presentlythis is illegal, both in America and herein the UK.

However, in the face of such a shortage oforgans, do you think financial rewards andincentives should be offered?

What concerns might be raised aboutfinancial reward for organs?

8. Luisa lives in a shanty town in Brazil.She has 7 children, and struggles everyday to provide food for them. Shedecides to sell one of her kidneys to awealthy family in Brazil whose11-year-old son is seriously ill awaitinga kidney.

What are Luisa’s motives in offering herkidney? Do you think this arrangementshould proceed? Think of the obviousadvantages and less obvious disadvantages.

9. ‘NEED A KIDNEY TRANSPLANT? I CANDONATE A KIDNEY TO YOU FOR FREE.’

This advert appeared in newspapers fromPatricia. She believes that to offer her kidneyto save another’s life is a good thing to do.

At present it is illegal for a stranger to donateto a stranger.

Do you think Patricia should be allowed tocarry out her wishes in giving one of herkidneys to a stranger?

10. Jim sends off his form to the NHSOrgan Donor Register but writes onit ‘I do not want my organs to go toanyone who is not Scottish’.

Will his wishes be respected?

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Religious Views42/43

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OrganDonationTeaching Resource Pack

Many people in our society base their decisionmaking on the religious values and principles theyhold. This is no different when families are askedto consider organ donation: they often wish toconsult with religious authorities. It would then beof help to know a little about the attitude ofvarious religions to organ transplantation.

In general, with the exception of a few religiousgroups such as Shintoists, Jehovah Witnesses andRastafarians, all major world religions either activelyor passively support organ donation or are neutral.Romany Gypsies do not accept transplant of organs.

Here is a summary of the main religious views.

The Christian churches: None of the Christianreligions has ethical objections to organ donation.Christian churches encourage organ and tissuedonation, stating that we were created for God’sglory and for sharing God’s love. They encouragemembers to register as organ donors and prayerfullysupport those who have received an organtransplant.

Buddhism: Buddhists believe that organ andtissue donation is a matter of individualconscience and place high value on acts ofcompassion. A Buddhist leader describes theirposition as:

“We honour those people who donate theirorgans to saving lives.”

Hindu and Sikh: The Hindu and Sikh religionshave no objections to organ donation. Indeed,Hindu mythology has stories in which the parts ofthe human body are used for the benefit of otherhumans and society. There is nothing in theHindu religion indicating that parts of humans,dead or alive, cannot be used to alleviate thesuffering of other humans.

Judaism: All branches of Judaism support andencourage donation. According to one Rabbi:

“If one is in the position to donate an organ andsave someone’s life, it’s obligatory to do so, evenif the donor never knows who the beneficiary willbe. The basic principle of Jewish ethics is ‘theinfinite worth of the human being’.”

Islam: Under Islamic law it is practice for bodiesto be buried as quickly as possible after death.Therefore, sometimes requests for organ donationare refused. However, in 1995 the Muslim law(Shariah) Council UK issued a directive supportingorgan donation and transplantation. The religionof Islam believes in the principle of saving livesand supports organ transplantation with thatcontext.

Shinto: In Shinto the dead body is considered tobe impure and dangerous, and thus quitepowerful. ‘In folk belief, injuring a dead body is aserious crime’ according to E. Namihira in hisarticle, Shinto Concept Concerning the Dead HumanBody. To this day it is difficult to obtain consentfrom bereaved families for organ or tissuedonation, the Japanese regard them all in thesense of injuring the body. Families are oftenconcerned that they do not injure the ‘itai’, therelationship between the dead person and thebereaved people.

Discussion points

• Why do almost all the main world religionssupport organ donation and transplantation?What are the general shared principles theyhold regarding human life?

• Consider the views held by the Shinto religionregarding the dead human body. What doyou think about their ideas?

See also the following leaflets prepared by NHSUK Transplant:

• Christianity and Organ Donation;• Judaism and Organ Donation;• Buddhism and Organ Donation;• Hindu Dharma and Organ Donation;• Sikhism and Organ Donation;• Islam and Organ Donation

Copies available from www.uktransplant.org.uk

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The Future44/45

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OrganDonationTeaching Resource Pack

Non-heartbeating Donation

Today most of the organs that are donated comefrom those who have died. The patient is on aventilator, the heart is still beating and death hasbeen confirmed by brain stem testing.

The ventilator provides oxygen which keeps theheart beating and blood circulating after death.These donors are called heartbeating donors.Organs such as hearts and lungs, whichdeteriorate very quickly without a blood supply,are usually only donated by heartbeating donors.Very few people die in these circumstances.

Patients who die in hospital but are not on aventilator can, in some circumstances, donatetheir kidneys, and in certain other circumstances,other organs. They are called non-heartbeatingdonors. Both heartbeating and non-heartbeatingdonors can donate their corneas and other tissuesuch as skin, bone and heart valves.

Because of the shortage of donated organs,interest in non-heartbeating donation is growing.

In a small number of hospitals, patients who arecertified dead on arrival or die in the accident andemergency department can donate organs, inparticular kidneys as they are able to toleratelonger periods without oxygen than other organs.For this to happen, however, steps have to betaken to preserve the kidneys until the next of kin

are contacted and the possibility of organdonation discussed with them. This is a specialtechnique in which the kidneys are flushed with acold preservation fluid. To do this a small tube isinserted into a blood vessel in the groin. Thismust be done within minutes of death to ensurethe kidneys remain suitable for transplantation.

If the family object then the procedure goes nofurther and the small tube is removed. If thefamily agree to donation then the kidneys areremoved and transplatation is carried out in theusual way.

Discussion point

• How do you think the public would react tonon-heartbeating donation?

Elective Ventilation

Elective ventilation is the use in intensive care ofartificial ventilation in a selected group of deeplycomatose patients close to death in order topreserve the patient’s organs for transplantationafter death.

Elective ventilation first took place in the late1980s and increased donation. However, in 1994elective ventilation was stopped because there isa common law requirement that medicaltreatment should be intended for the ‘patient’sown benefit’.

Some people think that this decision should bechanged. They argue that patients who are deeplycomatose from brain injury or bleeding into thebrain should be allowed ventilation for the sake oforgan donation,when this is the stated will of thepatient or the will of his or her next of kin.

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Mr Jetmund Engeset, a consultant transplantsurgeon, believes that there should be a changein the law. He says:

“I believe this is for the good of everyone. For theperson who receives the organ, they are given anew chance of life. Society benefits because thereare fewer people on dialysis and the donor’sfamily benefits because they can feel some goodhas come out of their sadness. I have seen theuplift which is generated among donors’ familiesby organ donation.”

Intensive care exists to offer support to organsystems and thus allow patients to get over a lifethreatening illness and get back to life. Manyintensive care doctors in Scotland are thereforenot in favour of elective ventilation as it mayinvolve doing things to a patient from which theycannot benefit. Some may see elective ventilationas an unwarranted interference in the process of apatient dying.

However, if intensive care is inappropriatelyapplied it can also prolong death and thus giverise to increased distress to both patient and theirrelatives.

Discussion points

• Do you think the law should be changed?

• What do you think about the intensive carepoint of view?

Xenotransplantation

The future might lie in retrieving organs from othersources. Xenotransplantation involves transplantingfrom one animal species to another, with pigs themost likely source.

This requires genetic modification of the animal,to reduce the chance of the human body rejectingthe organ. At present, xenotransplantation is againstthe law in the UK, because of concerns about thetransmission of disease from one animal species toanother.

Mr Chris Rudge, Medical Director of NHSUK Transplant, said:

“This would appear to be an excitingdevelopment. It will be for the Department ofHealth to decide if or when preliminary medicaltrials can begin. There is still a lot of research tobe done. There are very real concerns over thepossible transfer of infections.”

However, there are other issues.

Dr Penny Hawkins of the RSPCA said:

“We have every sympathy for people who needorgan transplants, but it does not mean it’s rightto do anything to animals to solve the problem.This technique involves animal suffering.”

Similarly, a spokesperson from Compassionin World Farming said:

“CIWF is not alone in recognising the real risk tothe human population of the spread of animalviruses.”

Some also say that ‘scientists are playing God bychallenging the natural order’.

Some feel repulsion at the idea of placing animalparts inside humans.

However, is it wrong to deny long-sufferingpatients on waiting lists the hope and chance of a better life?

Discussion points

• The Minister for Health and Community Carehas received an angry letter from an AnimalRights group expressing concern at thegrowth and retrieval of pigs’ organs forhuman transplants.

• In your group discuss an answer the Ministerwould give and write it in the form of a letter.

• How do you feel about using animal organs?

• Are scientists playing God? If so, why or whynot? What do you think?

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Some Common Questionsand Answers

(Provided by NHS UK Transplant)

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What is organ donation?

Organ donation is the gift of an organ to helpsomeone who needs a transplant. The generosityof donors and their families enables about 2,700people in the UK every year to take on a newlease of life. Thousands of people have their sightrestored by donated corneas.

When was the first transplant?

A cornea was first transplanted in 1905. Bloodtransfusion became established in 1918 and thefirst successful kidney transplant was in 1954. Thefirst heart transplants took place in 1967.

What can be transplanted?

Kidneys, heart, liver, lungs, pancreas, small bowel,corneas, heart valves and bone can all betransplanted. Skin can be used to treat patientswith severe burns. Techniques are improving all thetime and it may soon be practical to transplantother parts of the body.

What organs or tissue can Idonate?

The organs that can be donated include heart,lungs, kidneys, pancreas, liver and small bowel.

Tissue that can be donated includes corneas, skin,bone, heart valves and other tissue. Corneas canbe transplanted to restore the sight of a personwho has a severe eye disease or injury. Bone andtendons are used for reconstruction after an injuryor during joint replacement surgery. A bonetransplant can prevent limb amputation inpatients suffering from bone cancer.

Heart valves are used to help children born withheart defects and adults with diseased or damagedvalves. Skin grafts are used as protective dressingsto help save the lives of people with severe burns.

Most people can donate tissue. Unlike organs,tissue can be donated up to 24 hours after a personhas died and can be stored for longer periods.

Reproductive organs and tissue are not taken fromdead donors.

Why are even more donors needed?

Every year hundreds of people die while waitingfor a transplant and many others lose their livesbefore they even get on to the waiting list. Thereis a serious shortage of organs and the gapbetween the number of organs donated and thenumber of people waiting for a transplant isincreasing.

Transplants are very successful and the number ofpeople needing a transplant is expected to risesteeply due to an ageing population, an increase inkidney failure and scientific advances which meanthat more people are now able to benefit from atransplant.

The number of available organs has fallen forseveral reasons. Only a very small number ofpeople die in circumstances where they are ableto donate their organs. Because organs have tobe transplanted very soon after someone has diedthey can only be donated by someone who hasdied in hospital. Usually organs come from peoplewho are certified dead while on a ventilator in ahospital intensive care unit, generally as a result ofa major accident like a car crash, a brainhaemorrhage or stroke.

The numbers of people, particularly youngerpeople, dying in these circumstances is fallingmainly because of welcome improvements in roadsafety, medical advances in the treatment ofpatients and the prevention of strokes in youngerpeople. While only a very few people die incircumstances which would enable their organs tobe donated, virtually everyone can donate theircorneas to help others to see or give bone, skin orother tissue after their death.

Another major reason is that many people havenot thought about donation or discussed it withtheir families. Too few people have joined theNHS Organ Donor Register or made sure thattheir families know their wishes. Relatives who donot know a person’s wishes may refuse permissionfor organs to be used.

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How do they know you are reallydead?

Organs are only removed for transplantation aftera person has died. Death is certified by a doctoror doctors who are entirely independent of thetransplant team. Death is certified in the sameway for people who donate organs as for thosewho do not.

Most organ donors are patients who die as aresult of a head injury, brain haemorrhage orstroke who are on a ventilator in a hospitalintensive care unit. In these circumstances, deathis confirmed by brain stem tests. The ventilatorprovides oxygen which keeps the heart beatingand blood circulating after death. These donorsare called heart beating donors. Organs such ashearts and lungs, which deteriorate very quicklywithout an oxygen supply, are usually onlydonated by a heart beating donor.

Patients who die in hospital but are not on aventilator can, in some circumstances, donatetheir kidneys and, in a very small number ofcases, their liver. They are called non-heartbeatingdonors. Both heart beating and non-heartbeatingdonors can donate their corneas and other tissuesuch as skin, bone and heart valves.

Can they keep you alive withmachines?

No, the patient is dead. A ventilator keeps thebody supplied with oxygen and this means theheart will continue to beat and circulate blood.This preserves the organs so they can be donatedfor transplant. When the ventilator is turned offthe heart will stop beating within a few minutes.

Will they just let you die if theyknow you want to be a donor?

No, the doctors looking after a patient have tomake every possible effort to save the patient’slife. That is their first duty. If, despite their efforts,the patient dies, only then can organ donation beconsidered and a completely different team ofdoctors would be called in.

Can I donate if I die in the accidentand emergency department?

Yes, in a small number of hospitals, patients whoare certified dead on arrival or die in the accidentand emergency department can donate organs,in particular kidneys which are able to toleratelonger periods without oxygen than other organs.For this to happen however, steps have to be takento preserve the kidneys until the next of kin arecontacted and can let their wishes be known. Thisincludes a special technique in which the kidneysare flushed with a cold preservative fluid. This isdone through a small tube which is inserted intoa blood vessel in the groin.

This must be done within minutes of death toensure the kidneys remain suitable fortransplantation and the deceased is not deprivedof the opportunity to donate. If the wishes of thedeceased are known (for example they are on theNHS Organ Donor Register), this procedure will beperformed. However, organ donation itself will nevertake place without full discussion with the relatives.

Can you donate an organ whileyou are still alive?

Yes, in some cases. The shortage of organs has ledto an increasing number of organ donations byliving people.

The most common organ donated by a livingperson is a kidney, as a healthy person can lead acompletely normal life with only one functioningkidney. Kidneys transplanted from living donorshave a better chance of long-term survival thanthose transplanted from people who have died.There are a number of reasons for this, the mainone being that the donor is alive and healthy.About 1 in 5 of all kidney transplants are from aliving donor.

Most living donor kidney transplants are betweenclose family members because they usually providethe best match. The donor might be a brother,sister, mother, father, aunt, uncle, grandparent orchild. The majority are between parent and childbut living donor kidney transplants betweenpeople who are not blood relatives – such ashusband and wife or between partners or closefriends – are becoming increasingly common.

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Before a living donor transplant can go ahead thereare strict regulations to meet and a thoroughprocess of assessment and discussion.

Part of a liver can be transplanted, and it is alsopossible to donate a segment of a lung and, in avery small number of cases, part of the smallbowel.

Hearts are also donated by living people. This isbecause for some patients with diseased lungswho need a transplant, it is more effective to givethem a combined heart and lung transplant, eventhough their heart is perfectly healthy. In thesecases, the patient’s healthy heart is thentransplanted into a patient needing a hearttransplant. This is known as a ‘domino’ transplant.

Why do we need to agree tobecome organ donors?

In the UK organs from a potential donor can onlybe used if the legal requirements of the HumanTissue Act 1961 and Human Organ TransplantsAct 1989 have been met. Under these Acts it isessential to try and find out whether the deadperson objected to donation and to seek theviews of close relatives.

Putting your name on the NHS Organ DonorRegister and carrying a card makes it easy foryour relatives to know your wishes. We know thatif a person has expressed a wish to be an organdonor then the relatives rarely object. That is whyit is so important that you make sure your familyis aware of your views on organ donation.

What is the NHS Organ DonorRegister?

The NHS Organ Donor Register is, quite literally, alife-saver.

It is a confidential, computerised database whichholds the wishes of more than 10 million peoplewho have decided that, after their death, theywant to leave a legacy of life for others. Theregister is used after a person has died to helpestablish whether they wanted to donate and, ifso, which organs.

Do I need to register if I have adonor card?

Yes, cards can and do get lost or damaged andyou may not be carrying one when you are takento hospital. Adding your name to the register is amore permanent way of expressing your wishes.You can still carry a card if you wish to. Do notforget to tell your relatives what your wishes are.

Will my name and address begiven to other organisations?

No, this information will only be used by NHSUK Transplant to register your wishes on theNHS Organ Donor Register. Your personaldetails would not be passed to any individualor organisation without seeking your explicitconsent.

I am not sure if I have alreadyregistered, what should I do?

Either write in and ask (the confidential nature ofthe register means that NHS UK Transplantcannot tell you over the phone) or apply to joinand their system will identify if you are already onthe register and update any relevant details.

Who would get my organs if Ibecame a donor?

Many things need to match, or be very close, toensure a successful transplant. Blood group, ageand weight are all taken into account. For kidneysthe most important factor is tissue type which ismuch more complex than blood grouping. Themore accurate the match, the better the chancesof success.

There is a national, computerised list of patientswaiting for an organ transplant. The computerwill identify the best matched patient for anorgan, or the transplant unit to which the organis to be offered.

The waiting list and donor organ allocationsystem is operated by NHS UK Transplant. Itworks round the clock, every day of the year andcovers the whole of the UK and Republic ofIreland.

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Are donors screened to identify ifthey have a transmittable disease?

Yes, blood is taken from all potential donors andtested to rule out transmittable diseases and virusessuch as HIV and hepatitis. The family of thepotential donor is made aware that this procedureis required.

Can I be a donor if I have anexisting medical condition?

Yes, having a medical condition does not necessarilyprevent a person from becoming an organ ortissue donor. The decision about whether some orall organs or tissue are suitable for transplant ismade by a doctor, taking account of the medicalhistory. Usually, but not always, it is possible forsome organs or tissue to be donated.

Can a donor be under 16?

Yes, if he or she has expressed such a wish, andthe parents agree to donation.

Can older people be donors?

In the case of corneas and bone donations, agedoes not matter. For other organs, it is theperson’s physical condition, not age, which is thedeciding factor. Doctors decide in each casewhether it is possible to use them. Organs frompeople in their 70s and 80s are transplantedsuccessfully.

Does the colour of my skin make adifference?

Yes and no. Organs are matched by blood groupand tissue type. The better the match, the greaterthe chance of a successful outcome. Transplantsare more likely to be successful where the donorand the patient are from the same ethnic group,because they are likely to be a better match.

A few people with rare tissue types will only beable to accept an organ from someone of thesame ethnic origin, so it is important that wehave donors from all ethnic groups.

Successful transplants are carried out betweenpeople from different ethnic groups, wherever thematching criteria are met.

Are there religious objections totransplants?

Most major religious groups approve and supportorgan transplantation, as it is consistent with life-preserving traditions. However, if you have anydoubts, you should discuss them with your ownspiritual or religious leader.

If someone needs an organdesperately is there any point inmaking a special appeal?

Yes and no. Any special appeal usually results inmore people agreeing to become donors and canincrease the number of organs available in thefuture.

However, family appeals through the newspapersand television will not result in an organimmediately becoming available for the person onwhose behalf the appeal was made. The patientwill still be on the waiting list, just like everyoneelse, and the rules that govern the matching andallocation of donor organs to recipients still apply.

Can I agree to donate some organsor tissue and not others?

Yes, you can specify which organs you would wishto donate. Simply tick the appropriate boxes onthe NHS Organ Donor Register form or on thedonor card, and let those close to you know whatyou have decided.

Can I agree to donate to somepeople and not to others?

No, organs and tissue cannot be accepted unlessthey are freely donated without any conditionsattached in terms of potential recipients. The onlyrestriction allowed is on the organs or tissue tobe donated.

Could my donated organ go to aprivate patient?

Possibly, but this is unlikely. Patients entitled totreatment on the NHS are always given priority.These include UK citizens, members of HerMajesty’s forces serving abroad and patients coveredby a reciprocal health agreement with the UK.

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Other patients would only be offered an organ ifthere were no suitable patients entitled to treatmentunder the NHS. Every effort is made to ensure thata donated organ does not go to waste if there issomeone who can benefit.

Would any of my organs be givento someone in another country?

Yes, there is an agreement that any organs thatcannot be matched to UK patients are offered topatients in other European countries. Likewise, UKpatients benefit from organs offered by otherEuropean countries. This co-operation increasesthe chance of a suitable recipient being found,ensuring that precious organs do not go to waste.

Does donation leave the bodydisfigured?

No, organs are always removed with the greatestof care and respect for the person by properlytrained surgeons. This takes place in a normaloperating theatre under the usual conditions.Afterwards the wound is carefully stitched up anda dressing is placed over it. Only those organsand tissue specified by the donor or their familywill be removed.

The donor’s external appearance is also fullyrestored where tissue has been donated.

The funeral will not be delayed and relatives maysee the body after the operation if they wish. Thetransplant co-ordinator will stay with the familyduring the whole process if the family wishes.

Does being a donor cause delays tofuneral arrangements?

No, once relatives have agreed, everything has tobe done very quickly to improve the chances ofsuccessful transplants, usually within 12 hours.

Does a donor’s family have to paythe cost of donation?

No, there is no question of any payment at all.The NHS meets the costs related to the donationof organs.

Will the NHS pay the cost of thefuneral?

No, funeral costs are met either by the family orfrom the person’s estate and not by the NHS orany Government authority.

My relative wants to be a donor.What do I need to do when theydie?

If they are certified dead in a hospital, simply tellany of the doctors or nurses involved in their carethat they wanted to donate. The earlier you areable to tell staff, the more likely it is that organscan be transplanted successfully.

If your loved one dies elsewhere, for instance athome or in a hospice, they can still donate tissue.Let the doctor who certifies death know theirwishes.

Will organs that are removed fortransplant be used for researchpurposes?

Organs that cannot be used for transplant willonly be used for medical or scientific researchpurposes if specific permission has been obtainedfrom the donor’s family.

How is organ donation differentfrom organ retention?

The problems of organ retention arose becauseproper consent was not obtained from parents orrelatives for organs and tissue removed at post-mortem to be retained for research or otherpurposes. Organs are only removed fortransplantation with the consent of relatives.

Can I leave my body for medicaleducation or research after I havedonated my organs?

No, bodies cannot be accepted for teachingpurposes if organs have been donated or if therehas been a post-mortem examination. Corneascan however be donated.

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Arrangements for whole body donation forresearch purposes or for anatomical examinationcan be made through HM Inspector of Anatomy.

Would a donor’s family ever knowwho the recipient was?

Confidentiality is always maintained, except in thecase of living donors, who are usually within thesame family. If the family wishes, they will begiven some brief details such as the age, sex andarea of the country of the person or persons whohave benefited from the donation. The patientswho receive the organs can obtain similar detailsabout the donors.

The families may want to exchange anonymousletters of thanks or good wishes through thetransplant co-ordinators and in some instancesdonor families and recipients have arranged tomeet.

Why should I discuss my wisheswith my relatives?

So that there can be no doubts about what youwould want to happen. Families are alwaysconsulted when there is a possibility of organdonation. Facing up to the death of a loved one ishard. Having to make a decision about organdonation when you are unsure what that personwould have wanted can be difficult.

A key reason why relatives do not agree todonation is that they do not know what theirloved one would have wished. However,objection is almost unknown if the family is awarethat their relative wished to donate.

Why can my family overrule mywishes?

Few, if any, transplant surgeons would go againstthe wishes of a family. Whilst there are unlikely tobe any repercussions against a surgeon whoremoved organs in the face of family objectionsfrom a person who wished to be a donor, thereare few surgeons who would add to the stress of agrieving family by acting contrary to their wishes.Negative publicity from such an act would alsohave a detrimental effect on organ donation.

Even if you think your family will object, you shouldjoin the NHS Organ Donor Register and tell themof your decision to be a donor when you die. Ifthere is written evidence of your wish to be adonor, most people will accept that, after death,your wishes should be respected.

What if I have no family or otherrelatives?

You can join the NHS Organ Donor Register andtell a friend or close colleague about your decision.

Should I put my wishes in my will?

By the time your will is read, it would be far toolate for you to become a donor.

Can I change my mind?

Yes, you can simply go to the Sign Me Upsection of the web site www.uktransplant.org.ukand fill in the form asking for your name to beremoved. If you prefer, you can write to the NHSOrgan Donor Register, UK Transplant, FREEPOST(SWB1474), Patchway, Bristol BS34 8ZZ. If youhave an organ donor card, tear it up. Let yourfamily know that you have changed your mind.

Can people buy or sell organs?

No, the Human Organ Transplants Act 1989absolutely prohibits the sale of human organs.

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I am interested in giving blood,what do I do?

Blood is needed constantly, for all kinds of things,such as cancer treatments, operations and inchildbirth. There are thousands of places all overthe country that hold blood donor sessions andnew blood donors are always welcome. Almostanyone aged 17 to 60 years and in general goodhealth can give blood.

I am interested in donating bonemarrow, what do I do?

Without bone marrow, blood cannot be produced.When things go wrong and the bone marrowbecomes damaged, for example as a result oftreatment for leukaemia or a related cancer of theblood, the patient must receive a transplant tosurvive.

The British Bone Marrow Registry (BBMR) is run bythe National Blood Service working in co-operationwith the other UK bone marrow/blood donorregistries.

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Activity Sheets

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ACTIVITY 1 – IDENTIFYING ORGANS AND TISSUES

DESCRIPTION SHEET 1

Ask members of your group to match the following descriptions with the correct organ ortissue. Only give them the first clue to start with, then the second, and so on.

Then, with your group, try to think of one or two additional facts about this organ or tissue, toreport back on later in the lesson.

Clues

1. This organ was first successfully transplanted in 1967, and now 85-90% of transplantrecipients are still well one year later.

2. It is a powerful pump and it is situated in the chest.

3. This organ is made of muscle but can become very diseased.

4. Every year on 14 February (St Valentine’s Day) this organ is pictured on thousands ofgreetings cards.

DESCRIPTION SHEET 2

Ask the members of your group to match this description with the correct organ or tissue. Onlygive them the first clue to start with, then the second, and so on.

Then, with your group, try to think of one or two additional facts about this organ or tissue, toreport back on later in the lesson.

Clues

1. About 60% of these organs are still functioning one year after transplantation.

2. They are sometimes transplanted together with another organ.

3. They can be very badly damaged by smoking.

4. They enable the body to take in oxygen for respiration and get rid of carbon dioxide.

5. They are situated in the chest.

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DESCRIPTION SHEET 3

Ask the members of your group to match this description with the correct organ or tissue. Onlygive them the first clue to start with, then the second, and so on.

Then, with your group, try to think of one or two additional facts about this organ or tissue, toreport back on later in the lesson.

Clues

1. Hepatitis C Virus can cause this organ to fail.

2. If this organ is not working properly, it can make you look a yellow colour.

3. This is the largest organ in the body.

4. It is the body’s food processor, store house distributor and detoxifying factory.

5. It is situated in the abdomen.

DESCRIPTION SHEET 4

Ask the members of your group to match this description with the correct organ or tissue. Onlygive them the first clue to start with, then the second, and so on.

Then, with your group, try to think of one or two additional facts about this organ or tissue, toreport back on later in the lesson.

Clues

1. This organ was the first to be transplanted.

2. When you drink a lot of water, these organs work hard.

3. As most people have two of these in their body, this is an organ that can be transplantedfrom ’living donors’.

4. These organs process all the blood in the body to filter out waste products.

5. Due to its distinctive shape and colour, a common bean is named after this organ.

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DESCRIPTION SHEET 5

Ask the members of your group to match this description with the correct organ or tissue. Onlygive them the first clue to start with, then the second, and so on.

Then, with your group, try to think of one or two additional facts about this organ or tissue, toreport back on later in the lesson.

Clues

1. Almost all of these tissues are still functioning one year after grafting, and the long-termsuccess rate is excellent.

2. Recipients have a tissue graft, rather than an organ transplant, since it is not a whole organthat relies directly on a blood supply.

3. When these tissues are diseased, it may not be possible to drive, watch television, read andwrite.

4. They enable light rays to pass into the body so that we can see clearly.

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ACTIVITY 2: TRANSPLANT QUIZ

1. A person who gives an organ or tissue to another is called a ——- (5).

2. The organ that pumps blood around the body (5).

3. Name for a heart, lung, liver, etc. (5).

4. The transparent “window” at the front of the eye (6).

5. This organ filters waste products out of the blood (6).

6. In the video, Billy was undergoing kidney ———— before he was offered a transplant (8).

7. Heart, lungs and liver are all organs that can be —————— from one person to another(12).

8. The transplant ————— talks to the relatives of a potential organ donor (11).

9. Even if you asked for your organs to be donated after your death, your ————— arealways asked (9).

10. One person’s —— can give another the gift of life (5).

11. These are used to take in oxygen (5).

12. A person who receives an organ or tissue from another is called a ———— (9).

13. The largest organ in the body (5).

14. Sometimes transplanted organs can be ———— by the body (8).

15. It has to completely stop functioning before a person’s organs can be donated (5, 4).

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ACTIVITY 3: TRANSPLANT QUIZ

1. Put a ring round the parts of the body that can be transplanted.

Brain Bone Cornea Kidney Heart Lungs Liver Pancreas Bone Marrow

2. A donor is someone who gives an organ. TRUE/FALSE

3. Transplant patients take drugs to prevent their new organs being TRUE/FALSErejected.

4. Once kidneys or a liver have been surgically removed from a TRUE/FALSEdonor, they can be used months later.

5. Carrying a donor card shows that you would like to be a donor TRUE/FALSEafter your death.

6. A recipient is a person who receives a transplanted organ. TRUE/FALSE

7. Anyone can successfully donate a kidney to anyone else. TRUE/FALSE

8. There are more than enough organs and tissues available for TRUE/FALSEtransplants.

9. Tests for brain stem death are carried out by two doctors not TRUE/FALSEconnected at all with the transplant teams.

ACTIVITY 1: IDENTIFYING ORGANS AND TISSUE

Solution

1. Heart2. Lungs3. Liver4. Kidney5. Cornea

SOLUTIONS TO ACTIVITIES

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ACTIVITY 2: TRANSPLANT QUIZ

Solution

1. Donor.2. Heart.3. Organ.4. Cornea.5. Kidney.6. Dialysis.7. Transplanted.8. Co-ordinator.9. Relatives.10. Death.11. Lungs.12. Recipient.13. Liver.14. Rejected.15. Brain Stem.

ACTIVITY 3: TRANSPLANT QUIZ QUESTIONS

Solution

1. Bone: Cornea: Kidney: Heart: Lungs: Liver: Pancreas: Bone Marrow.2. True.3. True.4. False.5. True.6. True.7. False.8. False.9. True.

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Personal Reflections62/63

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PERSONAL REFLECTIONS

From DarknessIt is a light, so crisp, so sharp,That has invoked a pain deep inside,My views are of that never seen,Yet no words….I hide.

I shadow with a vengeance,A fear of something not known,I feel that I am surrounded,And yet, still so alone.

I uncover with some courage,Some faith and great trust,I want to share all the beauty,It’s not a choice, it’s that I must.

My life has been that of darkness,For which I’ve lived throughout each day,Never a glimpse of friendly faces,No smiles were seen my way.

But, today I live rejoicing,For I know that God has might,After many years of blindness,I’ve been given the gift of sight!

(by Angela Maskin – wife of cornea transplantsurgeon, Steven L Maskin)

Published by the National Library of Poetry

Poem to my Donor’s FamilyTwo families,Each unknown to the other,Yet bound togetherForever and irrevocablyBy a golden chainWhose links areLove, unmatched generosity,And indescribable gratitude.Today is forever burnedInto the memories of both families.One will remember with sadnessThe tragedy which took their loved one.The other will remember with joyThe gift which gave their loved one back to them.

Ah! That wonderful gift!The gift of life!Praise be to GodFor families who can, despite their grief,Give to others so they might live.

You are my donor family.I am the recipient of your loved one’s heart.How can I ever say “Thank You”?I pray for you every dayAnd thank God for you every day.Because of your gift…your wonderful gift…I walked down the aisle at my son’s wedding.I saw my other son graduate from college.And I have faith I will see my grandchildren.

May God bless you and keep you;May he comfort you and strengthen you.This is my prayer for you.My wonderful donor family.I will always carry you in my heart.

Mildred Calvert – received a heart transplant 28 May 1998

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Sarah (aged 12) wrote this about herfamily’s decision to donate her brother’sorgans after he sustained fatal headinjuries on Millennium night.

“When my family was told that we could give hisorgans, I knew my mum and dad would say ‘yes’and there was no doubt about that. It made mefeel there was a bit more happiness for me andmy family and other families around the world.

I think people should give organs because you feellike a good person and you are helping others.”

Catherine now aged 19 describes how shefelt when involved in the decision todonate her brother’s organs. He was 15.

“Nothing in this world can prepare you for thedeath of someone you love. There are no remediesawaiting to ease the throbbing pain. The realityjust becomes a ticket to a different way of life, alife of coping and hopefully growing. I rememberwhen we were asked about donation. I rememberthinking it was all very quick, I still hadn’taccepted my brother was dead let alone whetheror not I was comfortable donating his organs.However my family, Mum, Dad my sisters andmyself all sat down together and discussed whatwe thought. Looking back I suppose the overridingfeeling was that we just couldn’t say ‘no’…”

Jane, a close friend of a donor describeshow she felt:

“Time begins to alter, expanding, contracting,spiralling There is no rhythm to this timeOur boy gives life to five familiesTheir families explode with anticipatory joy, oursburn pain into the fabric of our lives.”

For other material see the NHS UKTransplant website.(www.uktransplant.org.uk)

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Glossary of Terms

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GLOSSARY OF TERMS

Anaemia A shortage of red blood cells in the body, causing tiredness, shortness ofbreath and pale skin.

Blood group An inherited characteristic of red blood cells. The common classification isbased on whether or not the person has certain antigens (called A and B) ontheir cells. People belong to one of four groups, called A, B, AB and O.

Brain haemorrhage Bleeding into the brain substance.

Cadaveric organ A person who has donated organs after death.donor

Cornea The curved transparent structure forming part of the outer coat of the eye.

Diabetes A disorder characterised by high levels of glucose (sugar) in the blood streamdue to insulin insufficiency.

Graft A transplanted organ or tissue.

Haemodialysis A treatment for kidney failure in which blood is purified by passing it acrossan artificial membrane to remove waste products.

Heart valves A fold of membrane that permits the flow of blood in one direction. The fourmajor heart valves are the mitral, tricuspid, aortic and pulmonary valves.

Hepatitis Inflammation of the liver.

HIV Human immunodeficiency virus, the virus that causes AcquiredImmunodeficiency Syndrome (AIDS).

Hypertension High blood pressure.

Mortality rate The ratio of the total number of deaths to the total population.

Peritoneal dialysis A treatment for kidney failure where fluid is inserted into the peritoneal cavityvia a catheter. The toxins and excess fluid are then drawn across theperitoneal membrane back into the fluid.

Persistant vegetative A state where a person has suffered a severe brain injury resulting in a comastate with sleep and awake cycles but no evidence of awareness.

Primary biliary A slow, chronic liver disease that can gradually destroy the bile ducts withincirrhosis the liver.

Rejection The process by which the immune system recognises a transplanted organ asnot its ‘own’ and then tries to destroy it. Rejection can be acute or chronic.

Renal angiogram A type of X-ray that looks at the kidney’s blood vessels.

Tissue typing A set of proteins on the surface of the cells which can be numbered to providea ‘tissue type’. The three main sorts of tissue type characteristics (called A, B,and DR) are used for matching in kidney transplantation.

Transplant The replacement of an organ or tissue in the body.

Xenotransplantation The transplanting of tissue or organs from one type of animal into a humanor other type of animal.

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OrganDonationTeaching Resource Pack

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