Ethical and legal issues in
Deceased organ donation – a
birds eye view
Michael Bos
1st International symposium
Istanbul, Turkey
1st Internatonal symposium,
Istanbul 29-31 May 2014
1
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
2
European picture
country
Deceased donors
pmp
Kidney 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
1st Internatonal symposium,
Istanbul 29-31 May 2014
3
Public appeal campaign
• Organ donation week
• 3.7% of population
now registered as
organ donor
• National databank is
needed
1st Internatonal symposium,
Istanbul 29-31 May 2014
4
Legislation: opt-in system
•
•
•
•
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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 stateof-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
1st Internatonal symposium,
Istanbul 29-31 May 2014
5
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
6
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
7
Brain death issue
• 1968: Harvard criteria
• ‘A person is dead
when his brain is
dead’ (C. Pallis)
• Brain death is
accepted as the
unique definition of
the death of a person
• Medical and
philosophical concept
1st Internatonal symposium,
Istanbul 29-31 May 2014
8
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
1st Internatonal symposium,
Istanbul 29-31 May 2014
9
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
1st Internatonal symposium,
Istanbul 29-31 May 2014
10
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
11
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
12
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?
1st Internatonal symposium,
Istanbul 29-31 May 2014
13
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
1st Internatonal symposium,
Istanbul 29-31 May 2014
14
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
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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
1st Internatonal symposium,
Istanbul 29-31 May 2014
16
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
17
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
18
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)
1st Internatonal symposium,
Istanbul 29-31 May 2014
19
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
1st Internatonal symposium,
Istanbul 29-31 May 2014
20
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
1st Internatonal symposium,
Istanbul 29-31 May 2014
21
Finally…
• Thank you for your
attention!
• Any questions?
1st Internatonal symposium,
Istanbul 29-31 May 2014
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