Ethical and legal issues in Deceased organ donation – a birds eye view

1st Internatonal symposium, Istanbul 29-31 May 2014

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Ethical and legal issues in Deceased organ donation – a

birds eye viewMichael Bos

1st International symposium

Istanbul, Turkey


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Actual situation in Turkey

• 2014: >50.000 patients in Turkey with kidney failure, and in need of transplant

• Expected to rise to 80.000 in 2016• Only 17% have been transplanted• Main problem: lack of coordination between ICU

medical staff and MOH organ donation organization

• Also, high rate of family refusal for deceased donation

• 2001: National transplantation Coordination system (MOH)


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European picturecountry Deceased donors

pmpKidney TX deceased donors pmp

All kidney tx pmp

Spain 35,1 46,8 54,5

Croatia 34,8 50,5 52,5

France 25,9 42,3 47,9

Norway 23,4 43,6 59,8

Italy 21,9 26,1 29,3

Germany 12,8 22,2 31,5

Greece 6,8 11,4 15,0

Turkey 4,6 7,0 39,0


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Public appeal campaign

• Organ donation week• 3.7% of population

now registered as organ donor

• National databank is needed


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Legislation: opt-in system

• Turkish law 2238 (1979) and Addendum 2594 (1982)• Very basic law: 4 chapters, 17 articles• Buying and selling of organs is forbidden• Live donation ≥18 yrs, mental capacity• Death determined by 4 doctors, following medical state-

of-the-art (brain death)• Permission for donation and transplantation can be given

by deceased person (verbally or written), or next-of-kin• If next-of-kin do not exist, or cannot be found, donation

and transplantation can take place without permission of next-of-kin in a patient whose life depends on it


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Alternative system: opt-out

• E.g. Belgium, France, Spain

• Organ donation is allowed in persons, who – during life – have not expressed and/or registered an objection (= first person consent)

• Permission from next-of-kin is not legally necessary (but they are usually consulted)


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Differences opt-in vs opt-out

• In most opt-in legislations, permission for organ donation can be given:

• 1) by the deceased person (in a registry, on a donor card)

• 2) if no decision by deceased person<, next of kin can decide

• In opt-out legislation, it is basically always the deceased persons whose decides (first person consent)


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Brain death issue

• 1968: Harvard criteria• ‘A person is dead

when his brain is dead’ (C. Pallis)

• Brain death is accepted as the uniqueunique definition of the death of a person

• Medical and philosophical concept


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Whole brain death vs brain stem death

• Most countries have accepted whole-brain death criterium: irreversible loss of all functions of the brain, incl. brain stem

• UK: follows brain-stem death criterium – death is when the essential function of the brain stem is irreversibly lost

• Most western countries have brain death protocol: standardized diagnostic and additional testing guidelines


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Situation in Turkey

• Total brain death declarations (2014): 5341 brain dead patients in Turkey, but only 345 actual donors (4.6 pmp)

• Only 20% of family with brain dead donor consent to donation

• 1800 patients waiting for organ die every year• Most of the 5449 transplants are with live donor• Reasons for low number:• Low trust in brain death determination• Religious (Islamic) objections against organ donation• 1980: High Council for Religious Affairs in Turkey ruled

that Islam allows organ donation and transplantation (as does Islamic code of medical Ethics, and most Islamic religious leaders) – Declaration no. 396


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Islamic criticism of brain death

• Some religious critics: Islam defines ‘death’ as the separation of the soul from the body; however this does not occur in brain death.

• Ismail Yakit (theologian): the definition of death cannot be based on the separation of body and soul, as there is no exact (scientific) definition and manifestation of the soul. Doctors should define and determine death (irreversible loss of function, no chance of recovery)


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Other reasons for resistance

• Deceased donation is seen as taking part in a sort of black market for organs (popular misconception)

• Donating an organ damages the physical integrity of the body (however donors get proper treatment to preserve this outward integrity)


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Issue of consent

• First person consent vs family consent

• What if deceased has consented, but family refuses? Who has last word in decision?

• What if family members disagree?

• Should it be decision of spouse or wider family?


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Family guidance during organ donation

• Many family refusals are caused by insufficient or conflicting information & guidance from staff (J. Rodrigue)

• Best approach is to have one experienced person (nurse, doctor) as liaison throughout the donation procedure (UK – Specialized Nurse for Organ Donation)

• Family must be assured that patient gets optimal care, also when donation is refused or not taking place


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End-of-life care and DCD

• Donation after Circulatory Death is another approach to deceased organ donation

• DCD does not take place in Turkey? (no data available in Global Observatory)

• DCD involves: • a) withdrawing/withholding life support

care (controlled DCD)• b) stopping after unsuccessful

resuscitation effort (uncontrolled DCD)


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DCD and best interests principle

• Decision to stop life support/treatment is taken because further treatment is ‘not in the patients best interest’

• Decision to withdraw treatment is a medical decision made by physician/team, based on notion of ‘futile care’

• Decision to withdraw treatment is not taken with an eye on organ donation


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Determination of death in DCD

• More problematic than in brain dead patient• No standardized tests• Essential issue is circulatory and respiratory

arrest (following cardiac arrest)• 5-minute time interval (no-touch time) is

observed to ensure that circulatory arrest is permanent/irreversible (resulting in lack of circulation in the brain and irreversible damage)


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Donor management

• Treatment of a dying (DCD) or brain dead (DBD) donor, with aim to maintain physical function, optimize organ viability and chance of successful transplantation.

• If a patient has (himself or through family) consented to donation, donor management is in his best interest (even if it results in some harm/distress)


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Allocation of organs

• Aim to distribute organs from deceased donors according to objective, medically based allocation algorithm

• HLA-based, Meld-system, LAS-score etc.• Ethical debate whether aim should be to:• a) serve sickest/most urgent patient first• b) avoid primarily death on waiting list• c) get best transplant outcome (survival,

QoL)


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Should there be priority groups?

• Pediatric patients (pediatric organs, small adults, young donors <35 yrs)

• Old-for-Old (>65 yrs donors to >65 yrs recipients)

• Highly immunized patients

• Acceptable mismatch patients

• Rare phenotypes


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What to do with discarded organs?

• Some organs are retrieved but not transplanted for quality reasons

• What should be done with these organs?

• Used for research and education

• Destruction

• Sent back to donor (for burial/cremation)

• Almost no legal regulations for this


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Finally…

• Thank you for your attention!

• Any questions?

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Ethical and legal issues in Deceased organ donation – a birds eye view

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