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101
ORGANS, TISSUES & CELLS, (17), 101-112, 2014
mittee of the European Society for Organ Transplantation
(ESOT) and aims to integrate and structure this field of
science by bringing together professionals from varied
backgrounds across more than 25 European countries. Re-
cent discussions within the Deceased Donation Working
Group have focussed on the timing of the moment of ask-
ing (1) for organ donation - and how the introduction of
donation after circulatory death (DCD) might potentially
impact on the established practice whereby the request for
organ donation follows the confirmation of brain or brain
stem death.
Introduction
The ‘Deceased Donation Working Group’ is one of seven
within the European discussion platform known as ’Ethi-
cal, Legal and Psychosocial Aspects of Organ Transplanta-
tion’ (ELPAT). ELPAT acts as the official advisory com-
Correspondence: Nichon E. Jansen PhD, Senior researcher,
Dutch Transplant Foundation, P.O. Box 2304, 2301 CH Leiden,
The Netherlands; e-mail: n.jansen@transplantatiestichting.nl
WHEN ARE BEREAVED FAMILY MEMBERS APPROACHED
FOR CONSENT TO ORGAN DONATION?
COMMENTARY FROM TEN EUROPEAN MEMBER STATES
NichoN E. JaNsEN1, MaryoN McDoNalD2, BErNaDEttE J.J.M. haasE-KroMwiJK1, Magi squE3,
tracy loNg-sutEhall4
1 Dutch Transplant Foundation, Leiden, the Netherlands
2 Department of Social Anthropology, University of Cambridge, UK
3 Faculty of Education, Health and Wellbeing University of Wolverhampton and The Royal Wolverhampton Hospitals NHS Trust, Wolver-
hampton, UK
4 Faculty of Health Sciences, University of Southampton, UK
Keywords - End of life care, family approach, organ donation, timing donation request
Received April 4th, 2014, revised June 27th, 2014, accepted June 30th, 2014
Summary
- This survey scoped the timing of the approach to bereaved family members and request for organ donation
in donation after brain death (DBD) and donation after circulatory death (DCD) potential donors in ten European member
states. Are there changes in established practice regarding when family members are asked to consider organ donation?
Representatives from ten member states responded to a survey seeking information on how death is diagnosed in the
DBD and DCD potential donor; the legal consent system and law on organ donation; the existence of national or local
protocols specifying when to approach relatives; and practices around the first moment of discussing organ donation and
the formal request.
Findings suggest that the historic practice of decoupling the confirmation of death discussion and the request for organ
donation in the potential DBD situation is becoming more ‘flexible’ or is changing to one in which a discussion about the
potential of organ donation is taking place before confirmation of death.
Decisions about the moment of asking may benefit from being embedded within local practices of ‘end of life’ care. Es-
tablishing donation as a usual part of end of life care would mean that the moment of asking would become a step in the
dying trajectory, facilitating the fulfilment of wishes regarding post-death use of organs for transplantation.
RESEARCH ARTICLE
102 N.E. JaNsEN et al.
respiratory’) criteria, now referred to as donation after
circulatory death, (DCD). This was stimulated by a per-
sistent shortfall in organs for use in transplant operations
(5). The modified Maastricht classification identifies four
categories of patients who could be potential donors after
confirmation of circulatory death (5, 6) (Table 1), and the
circumstances of death leading to DCD. Currently, DCD
category III is not widespread within European donation
programmes, with only three countries having high DCD
category III activity: Belgium, The Netherlands and the
United Kingdom (5). France and Spain only implement
donation from Maastricht categories I and II patients (7).
However, DCD programmes account for increasing num-
bers of the deceased donor pool in those countries that
offer this route to donation. In 2012, DCD accounted for
50% of the deceased donor pool in The Netherlands (7,
8), and in the UK DCD donors accounted for 40% of the
deceased donor pool in the period 2011-2012 (9).
There are differences in how death is diagnosed and
when it is confirmed depending on whether the patient
is a potential DBD or DCD donor. Of necessity, there is
also a difference in the content of discussions with family
members about the potential for organ donation - and a
difference in the timing of a formal request.
The timing of the request for donation
The issue of ‘when’ family members should be asked
about organ donation first appeared in the literature in the
late 1980s, with authors proposing that family members
needed time to accept that death had occurred before they
were presented with the option of organ donation (10-12).
The timing of the approach was reported as being a critical
factor in the consent process (13) and influential in fam-
ily grieving (14). During this period of research activity,
Diagnosis of death across Europe
Legislation or guidance specifying the criteria that are both
necessary and sufficient to diagnose death, and the clinical
tests and standards that physicians must use to establish
that the criteria have been fulfilled, has been in existence
since at least the late 1960s (2). Despite modifications and
amendments over subsequent decades, each country deliv-
ering an organ donation service will have clinical criteria
in place to guide the diagnosis of death in the potential
organ donor. In all European countries except the UK, the
criteria that must be fulfilled are that of a whole brain death
formulation, which requires that all clinical functions of
the brain (cerebral hemispheres, diencephalon, and brain-
stem) must have ceased1. In the UK, the criteria that must
be fulfilled are laid out in a brainstem death formulation
(3). Both diagnoses of death require the irreversible loss of
the capacity to breathe, combined with the irreversible loss
of the capacity for consciousness.
Donation after circulatory death
Until roughly the mid-1960s, the widely accepted defini-
tion of death was based on cardio- respiratory criteria.
With the development of whole brain and brainstem death
criteria for diagnosing death, and the beginnings of organ
donation programmes, the brain dead donor became the
sole source of organs for transplantation due to the supe-
rior quality of the organs retrieved and the fact that only
brain dead donors could donate hearts (4). Therefore the
trajectory of dying that led to deceased organ donation was
via a diagnosis of death based on neurological criteria, now
referred to as donation after brain death (DBD). However,
since the beginning of the 1980s, there has been a growing
interest in the potential of retrieving organs from indi-
viduals diagnosed dead via circulatory (previously ‘cardio-
Category Description Explanation Type of
DCD
Countries
carrying out
IDead on arrival
at the hospital
The patient is declared dead at the scene of the accident/injury and
is transferred to the hospital for organ donation.
Uncontrolled Spain
II Unsuccessful
resuscitation
The patient is in the hospital or brought into the Emergency Room,
while being resuscitated. When efforts for CPR have turned out to
be ineffective DCD donation is an option.
Uncontrolled Spain
III Awaiting
cardiac arrest
A patient with a very poor prognosis, for whom ongoing treatment
is agreed to be futile, and who is deemed to be likely to die shortly
after support is withdrawn: for example, patients with severe brain
damage, but not fulfilling all the brain(stem) death criteria.
Controlled The Netherlands,
UK
IV Cardiac arrest
whilst brain
(stem) dead
The patient has been confirmed brain (stem) dead (by testing), and
somewhere in the process before organ procurement starts, the
patient suffers an unexpected cardiac arrest that does not respond
to CPR.
Controlled The Netherlands,
UK
DCD = donation after circulatory death, CPR = cardio-pulmonary resuscitation
TABLE 1 - Modified Maastricht categories of potential DCD [NHB] donors I - IV [Kootstra et al. 1995].
When are bereaved family members approached for consent to organ donation? … 103
developed brief commentaries about current practices in
the timing of approaches to family members asking them
to consider donation in both DBD and DCD donation.
These initial commentaries (four countries) together with
findings from a literature review seeking to identify the
legislative frameworks and consent systems underpinning
organ donation programmes across Europe, were used to
develop a brief, factual questionnaire comprising 15 ques-
tions. The questions covered: how death is diagnosed in the
DBD and DCD potential donor; the legal consent system
and law on organ donation; the existence of national or lo-
cal protocols specifying when to approach relatives; and the
practice of the first moment of discussing organ donation.
This questionnaire was completed by the members who had
prepared commentaries, and the initial findings from four
countries were discussed at the deceased donation working
group in November 2012. Following these discussions, a
decision was taken to try and canvass a broader picture of
current practice and so the questionnaire was e-mailed to
contacts in a 15 further countries (Table 2).
Results
Recruitment
Fifteen country contacts were approached and asked to
complete the questionnaire. This yielded seven responses
from six countries, a response rate of 40%. To preserve
Garrison and colleagues (13) introduced a new concept to
the timing debate – that of decoupling. They report that
allowing a ‘temporal separation’ between the explanation
of death, or the certainty of family acceptance of death, and
the request for donation yielded a higher consent rate than
when the death discussion and request were completed at
the same time (13).
More recent work has linked the timing of the donation
request to family members’ agreement or disagreement to
donation (15), and studies reporting factors that influence
family members’ decision-making have included the tim-
ing of the request (16-19). A systematic review carried out
by Simpkins et al. in 2009 (20) indicated that the timing
of the request for organ and tissue donation was one of the
main modifiable factors (others are listed) associated with
consent or refusal for organ donation by relatives. This
underlined the significance of the timing of the approach.
Perhaps as a result of this early empirical work and rein-
forcement from later work, the formal request to the family
for their consent2 in DBD donation has usually come after
the confirmation of death by country-specific testing of
brain function3. This is not the situation in DCD donation
where the discussion with family members regarding the
potential for organ donation is reported to follow on from
a discussion about the futility of on-going treatment and
the intention of the ICU team to withdraw life-sustaining
treatment. This difference in the timing of approach is
necessary as seeking consent after circulatory death has
been confirmed would mean that organs would not be
available for donation purposes due to extended periods of
warm ischaemia.
However, anecdotal evidence from practice and empiri-
cal work from The Netherlands (4, 21) suggests that the
practice of discussing donation with relatives prior to the
certified death of the potential DBD donor has become
increasingly common, thereby undermining the concept
of decoupling. Since research (4, 21) suggests that this
may be impacting on consent rates, and yet may not be an
obvious change in historic practice, the Deceased Donation
Working Group decided to try and scope current practice
about the moment of asking for DBD and DCD donation
across member states. This paper reports the results from
that scoping exercise.
Material and Methods
Initial discussions about this potential change in practice
took place during the annual meeting of the Deceased
Donation Working Group in November 2011. Members
of the group based in: Spain, Sweden, The Netherlands,
and the United Kingdom, who were working in intensive
care medicine, health/social sciences, and clinical practice,
Response to
questionnaire
No response
Austria X
Belgium X
Croatia X
Czech republic X
Denmark X
Estonia X
Finland X
France X
Germany X
Hungary X
Italy X
Norway (2) X
Poland X
Switzerland X
Turkey X
Total 6 (40%) 9 (60%)
TABLE 2 - Overview of countries contacted and response or no response to
the questionnaire.
104 N.E. JaNsEN et al.
Question 2. Is DCD donation or donation after circula-
tory death (non-heart-beating donation) implemented in your
country/hospital?
Four countries reported implementing donation after
circulatory death: Spain (mainly category I and II), Swit-
zerland (categories I, II and III), The Netherlands and the
UK (categories II, III and IV) (Table 3).
Question 3. What kind of legal consent system do you have,
opting-in (explicit consent) or opting-out (presumed consent)?
Six countries have opt out systems in place (Croatia, Esto-
nia, Norway, Poland, Spain, Sweden), and four countries
have opting in systems where individuals can register their
views about what organs or tissues they wish to donate after
their death (Table 4).
Question 4. Do you have a law on organ donation and, if so, is
it explicit concerning the timing of the approach to the family
for organ donation (before or after death)?
the anonymity of the contacts, only their clinical dis-
ciplines are listed. Participants included seven medical
practitioners (intensivists/transplant coordinators (doctor
or nurse)/MD).
Responses from these six countries were combined with
the responses from the initial four (n=10) and all are
reported here.
Question 1. How is death diagnosed in the case of a potential
DBD or heart-beating donor (by brain stem death, whole
brain death (including EEG and apnoea test), or otherwise)?
Death confirmation in the potential DBD donor is
based on the whole brain formulation in all responding
countries other than the UK (where brain stem death
criteria apply) and Estonia where both sets of criteria are
used (depending on the time line). The use of auxiliary
tests for checks varies by country with, for example,
The Netherlands requiring an EEG and apnoea test as
mandatory, while in Sweden an EEG is not performed
(see Table 3).
Death diagnoses in DBD donors Donation after circulatory
death implemented?
Croatia Whole brain death is diagnosed, including apnoea test and some of the
following ancillary tests: electroencephalogram (EEG), transcranial Doppler (TCD),
angiography, gammagraphy.
No
Estonia Both brainstem death (brain death protocol: 12 hours; 72 hours in certain cases)
and whole brain death is diagnosed (brain death protocol: 6 hours, including
ancillary tests, usually either EEG or TCD). The apnoea test is performed in every
case. The method of diagnosing brain death can depend on the feasibility of
ancillary tests.
No
Germany Whole brain death is diagnosed, including appropriate additional ancillary tests
such as: EEG, , BAEP (early acoustically evoked potentials) / somatosensorisch
evoked potentials (SEP), detection of cerebral circulation arrest (TCD, perfusion
scintigraphy), cerebral angiography.
No
Norway Whole brain death is diagnosed, confirmed by cerebral angiography/arcography
for all donors (mandatory). Before this test is performed, the law requires a full
brain stem reflex test with apnoea test.
No
Poland Whole brain death including apnoea test. EEG is not mandatory, but in some
cases we have to use instrumental tests.
No
Spain Whole brain death is diagnosed, including TCD, EEG, gammagraphy and apnoea
test.
Yes, for potential DCD donor
Maastricht categories I and II. In
small numbers for category III
Sweden Whole brain death is diagnosed but without EEG. Not
Switzerland Whole brain death is diagnosed, including appropriate additional ancillary tests
such as: EEG, computed tomography angiography (CTA), TCD, intra-arterial digital
subtraction angiography (IA-DSA), magnetic resonance imaging and angiography.
Yes, categories I, II and III, but
only in very small numbers
The
Netherlands
Whole brain death is diagnosed, including EEG and apnoea test as mandatory
tests (or TCD, CTA if applicable)
Yes, categories II, III and IV, but
only high numbers on category III
UK Brainstem death is diagnosed with no confirmatory tests needed (UK is the only
country in Europe that uses these criteria).
Yes, categories II, III and IV, but
high numbers only for category III
TABLE 3 - Response to questions 1 and 2.
When are bereaved family members approached for consent to organ donation? … 105
Only three countries indicate that they have local pro-
tocols/guidelines: Spain, Sweden and the UK (Table 5),
however they are not explicit concerning the timing of the
approach to the relatives.
Question 7. In general, when is the first discussion on organ
donation with relatives?
Reponses indicate variation in practice. Four countries (Po-
land, Spain, Switzerland, Croatia) report the first discussion
taking place after the first or second sets of tests, or after
confirmation of death. Four countries (Germany, Sweden,
The Netherlands, UK) report that the request is made before
death is confirmed by testing as part of either an end of life
care discussion, or withdrawal of treatment discussion. Esto-
nia and Norway report that the timing of the first discussion
varies, and in Norway it is linked to family members raising
the issue of organ donation themselves (Table 5).
Question 8. When is an organ donation request made to the
relatives: is this before or after death?
Only three counties – Croatia, Poland and Switzerland –
stipulated that the request for organ donation came after
death had been confirmed by testing. In other countries
practice varied (Table 5).
Nine out of the ten responding countries have a specific
law underpinning and guiding the process of organ do-
nation (Poland does not), and eight out of the ten have
local guidance, recommendations or protocols in place
(Poland and Estonia do not) (Table 4). The Netherlands
is the only country where the law stipulates that a formal
request for organ donation can only take place after death
is confirmed.
Question 5. Do you have a national protocol or national
guidelines on organ donation and, if so, is this document ex-
plicit concerning the timing of the approach to the family for
organ donation (before or after death)?
Of the six countries that provided detailed feedback, two
countries (Croatia and The Netherlands) report national
protocols that legislate when to request donation. Two
countries, Norway and the UK, cite protocols that state
when an approach should be made, and one country,
Switzerland, cites national guidelines4 indicating when the
approach should be made (Table 4).
Question 6. Do you have local protocols on organ donation
and, if so, are they explicit concerning the timing of the
approach to the family for organ donation (before or after
death)?
Q3 Legal
consent system
Q4 Law on organ donation Q5 National protocol or guidelines explicit concerning
timing of the approach to relatives?
Croatia Opting-out Transplant law National protocol in which states that organs can be retrieved
only from a dead person, which actually means we talk to
family after death of the patient.
Estonia Opting-out Handling and Transplantation of
Cells, Tissues and Organs Act
No national protocol
Germany Opting-in Transplant law National guidelines, formally the result of any request is only
binding when death had been certified and consent still exists.
Norway Opting-out Transplant law National protocol says family approach should be done when
all clinical signs indicate the total destruction of the brain.
Some hospitals use cerebral echo Doppler or CT angiography
for correct timing. In case of family refusal there is no need for
cerebral angiography before withdrawal of treatment.
Poland Opting-out No No
Spain Opting-out Transplant law Good practices guide
Sweden Opting-out Transplant law Recommendations
Switzerland Opting-in Transplant law National guidelines, but their use is not mandatory. It is
explained to ask the family once brain death is determined.
The
Netherlands
Opting-in Dutch organ and tissue act National protocol for organ and tissue donation is explicit; only
ask consent after death (conform with the law on donation).
UK Opting-in Human Tissue Act Management protocol description documents indicate that
family member should be approached after a diagnosis of
death (DBD and DCD) has been made.
TABLE 4 - Response to questions 3, 4 and 5.
106 N.E. JaNsEN et al.
Four countries report that there have been no changes in
practice over the past five years. Those who indicate chang-
es in the moment of asking, and provide their reasoning for
it cite: limited resources, e.g. ICU beds and the changing
profile of the potential organ donor as factors (Spain and
Germany); and testing only being carried out if donation
is to proceed (UK) (Table 6).
Question 11. Is there a national Donor Register in your coun-
try? If so, what are the options it offers for the registration of
your preferences for donation?
Registration of an individual’s decision regarding organ
and tissue donation is facilitated by a national Donor Reg-
Question 9. Are there differences in practice in the moment
of asking for organ donation between cases of potential heart-
beating donors and those of potential non-heart-beating do-
nors Maastricht category III (if applicable)?
In those countries where DCD category III donation is
practised – Switzerland, The Netherlands and the UK –
the discussion about donation takes place before death has
occurred (Table 6).
Question 10. Have there been changes in practice in the mo-
ment of asking for organ donation during the last 5 years? If
so, please explain what exactly has changed and the reasons
why.
Q6 Local protocols on
organ donation explicit in
timing approach relatives?
Q7 When is first discussion of
organ donation?
Q8 Donation request before or after
death?
Croatia No local protocols After death After death is confirmed by testing
Estonia No local protocols Depending on various factors. It is the choice of the ICU doctor, usually right
after brain death is confirmed, but there are
many variations.
Germany No local protocols Most people introduce the end of
life care and the need to start brain
death diagnostics, which means
prolongation of therapy until death
has been certified.
This can be before or after death is confirmed.
The physician can give communication a turn
to the point that relatives ask “what are you
going to do after brain death certified”, you
have to give a true answer…
Norway No local protocols Major differences between hospitals
and situations. Also relatives often
ask quite early whether organ
donation would be an option.
There is no formal difference between first
discussion and the actual request.
Poland No local protocols It depends on many things, but it
is usually after first session of brain
death tests.
After death is confirmed by testing.
Spain Protocols and
recommendation but not on
timing approach
In the normal process it is after
brain death diagnosis, but there are
different scenarios at end of life.
Usually after death, but we can introduce
the topic in the emergency department and
request intubation and admission to the ICU
only for donation.
Sweden Protocols and
recommendation, but no
detailed instruction
Today earlier approach when
discussing the meaningfulness of
continuing intensive care.
If possible after death, but see Q 7 about
timing.
Switzerland No local protocols In general after brain death, it may
happen that the family asks the
question before.
After death [is confirmed by testing] for
DBD donor and before death in the case of
potential DCD donors.
The
Netherlands
No local protocols Nearly always before death of the
potential donor.
Before death is confirmed by testing in potential
DBD donors. For potential DCD donors it is
before death, but after treatment is futile
UK Local guidelines exist, but
not on timing approach.
Before brainstem death (BSD)
testing, but when a discussion
about futility has taken place.
Before the first BSD test or immediately after
the first set. But there appears to be variability.
For potential DCD donors it is before death,
but after treatment is futile.
ICU=intensive care, DBD=donation after brain(stem) death, DCD=donation after circulatory death
TABLE 5 - Response to questions 6, 7 and 8.
When are bereaved family members approached for consent to organ donation? … 107
Question 13. What is the role of the family in the decision-
making process: (i) do they need to give consent for donation
(even when consent is presumed) and (ii) are they allowed to
veto the decision made by the potential donor in the register
or on a donor card?
In The Netherlands and Switzerland, if the deceased has
consented to donation via registration, family members are
informed of this decision and their consent is not needed
for donation to proceed. In Norway, family members are
asked to confirm that the deceased would not have object-
ed to donation. In all other countries, family members are
asked for consent to donation. In all ten countries, family
members can veto the decision of the deceased to become
an organ donor (Table 7).
ister in five countries, with four using donor cards to regis-
ter wishes, and one country requiring a digital signature to
be listed with other health information (Table 7).
Question 12. When is it permitted by law to consult the Donor
Register: is this before or after the death of the potential organ
donor?
Four countries report legislative boundaries as to when the
Donor Register can be consulted (Croatia, Poland, Swe-
den and The Netherlands), with consultation only being
allowed: after death is confirmed by testing (Croatia and
Sweden), during testing (Poland), when death is expected
within 12 h (The Netherlands). In the UK and Estonia, con-
sultation of the register can take place at any time (Table 7).
Q9 Differences in practice in moment of
asking between potential DBD or DCD
category III donors?
Q10 Changes in practice in timing to approach relatives
during the last 5 years?
Croatia Not applicable No
Estonia Not applicable No
Germany Not applicable Some people say that more often during the introduction
of end of life care, the communication drifts to donation.
Secondly, many hospitals in my state have problems of
intensive care medicine resources. If no consent to organ
donation exists, live care therapy is limited and the patient dies.
Norway Not applicable No
Poland Not applicable No
Spain Not applicable Yes, due to the type of organ donors (old and multi-morbidity)
and the application of vital support limitation and constraint of
ICU resources, recently we ask for donation before brain death
in specific cases. We are trying to “fish” patients suitable for
organ donation in the A&E, in case there are no treatment
options. We ask relatives about “intention to donate”, if
they are pro-donation, the patient is admitted to the ICU as a
potential donor. If the family does not agree, we transfer the
patient to a regular ward.
Sweden Not applicable With an increasing knowledge and also though it is mandatory
to be honest about why care is continued after futility, there is
today a change in the moment of asking.
Switzerland Yes, in case of DCD the family is approached
before treatment withdrawal.
Yes, in the past, many physicians asked the family for donation
before death. This could be changed with the national
guidelines and the training courses, in which it is explained to
ask the family after the brain death diagnosis is performed.
The
Netherlands
In former days in DBD donors relatives were
approached after BD, but nowadays it is before all
BD tests are performed. So too in potential DBD
as for DCD donors relatives are approached before
death is certified.
Yes, more and more relatives are approached for DBD
donation before brain death is certified. Ten years ago, only in
a few cases were relatives approached before brain death was
formally diagnosed. Nowadays it is the other way round.
UK Main difference is that for DCD the discussion
must be before death has occurred.
No evidence that there have been significant changes,
although it would appear that BSD testing is only done in
some places if the family wants to donate.
TABLE 6 - Response to questions 9 and 10.
108 N.E. JaNsEN et al.
Q11 Is there a national Donor
Register, if so, what are the
options?
Q12 When is it permitted to
consult the Donor Register?
Q13 What is the role of family in
the decision-making process?
Croatia Yes, citizens who do not wish to
donate sign the form which is then
deposited in the Register of the
Ministry of Health.
After death. Family need to give consent only for
minors and citizens in guardianship.
But if they oppose donation we
follow their decision.
Estonia It is possible to express consent
by digital signature through
health information system, but
unfortunately no enquiries are made.
That is not regulated by law. The family gives consent for
donation, even though the law
states presumed consent. By law:
other persons shall not prohibit the
removal of cells, tissues or organs, if
the deceased person had consented
during their lifetime.
Germany No, since 1-11-2012 every person of
16 years or older should get a donor
card from the health insurance,
which may be signed voluntarily
without further registration.
Not applicable The next of kin should respect the
assumed wishes of the deceased
(written or oral).
Norway No, but you can fill in a donor card
(you have to indicate name and
phone number of next of kin whom
you inform about your post mortem
will.)
Not applicable Relatives have to confirm that the
potential donor would not have any
objection to organ donation. Families
may veto the donors known will.
Poland Yes, it only offers the possibility of
saying that you do not want to be a
donor.
During brain death diagnosis. Relatives are allowed to veto.
Spain No, only donor card. Not applicable Although we have presumed
consent, the family is always asked.
Sweden Yes, you can sign to consent
(including research, education
purposes) and there are possibilities
to exclude organs or tissues you do
not want to donate.
After the declaration of death. Information to next of kin is
mandatory in Swedish law
(presumed consent), when the will
is unknown the next of kin shall
interpret the wish of the deceased.
If unknown, there is possibility to
veto.
Switzerland No, only a donor card. No applicable The law gives priority to the
donor’s consent. So if there is a
donor card, we just have to inform
the family. In practice: even when
the donor card says ‘yes’ and the
family is opposed, the process will
be stopped.
The
Netherlands
Yes, with four options:
Consent (you can exclude one or
more organs or tissues)
Objection
Decision by relatives
Decision by specific person (by name)
Before death, according to the
law when death is expected within
approximately 12 hours.
When consent is registered the
relatives will be informed about
donation and not requested. Legally,
no consent is needed.
UK Yes, you can say yes to all organs
and tissues or specify them.
There is no law on consulting, it
can be accessed at any time. Some
hospitals check the status of all
patients admitted to ICU, others
won’t allow until treatment becomes
futile.
Yes, we still need an agreement from
the family, even if the donor was on
the register and had recorded a ‘yes’.
Family can veto the recorded wishes
of the deceased.
TABLE 7 - Response to questions 11, 12 and 13.
When are bereaved family members approached for consent to organ donation? … 109
Discussion
We now have more pieces in the European jigsaw (1). Our
group discussion and small, fact-finding questionnaire is
informative in providing a picture of empirical practice
– rather than of the ideal or of the written guidance –
and suggests support for reported changes in established
practice regarding when family members are asked to
consider organ donation. The limitations of this study are
acknowledged in that it was a small-scale exploratory scop-
ing exercise, the number of respondents in each country
was limited to one in most instances and therefore findings
are not claimed to be representative, and the survey tool
was not subjected to validation. However, the findings are
of interest and merit further investigation.
This investigation has identified that there are specific driv-
Question 14. Amongst the medical profession or more widely,
is the idea that ‘donation is a right’ strong in your country?
Only one country responded unequivocally in the posi-
tive to this question (Croatia), with the rest indicating
that the option of donation as a right is not generally
supported among the medical professions in their country
(Table 8).
Question 15. Are there other cultural differences framing,
encouraging or inhibiting the practice, including the timing,
of requesting organ donation from relatives?
Only one country responded positively to this question
(Germany), but did not offer any details of what cultural
differences might be in evidence (Table 8)5.
Q14 Amongst medical professionals or more widely,
is the idea that ‘donation is a right’ strong in your
country?
Q15 Are there other cultural differences framing,
encouraging or inhibiting the practice of
requesting?
Croatia Absolutely. No
Estonia Amongst medical professionals this idea is not strong,
but still positively supported. More widely this idea is
not strong, because of no public awareness campaigns,
people are not well informed about donation and
transplantation in general.
There are no cultural differences that influence the
donation request.
Germany Most people do not think this way as they feel
uncomfortable about donation, they are afraid to harm
donor relatives.
Yes
Norway No information. No
Poland Yes. No
Spain No, although donation is a patient’s right by law, not all
doctors respect this option. Young doctors are accepting
this right, and offering donation is a doctor’s obligation.
We try to define donation as a high quality care in
patients’ end-of-life care.
Cultural differences include both written and unwritten
codes of communication. The way in which death is
experienced and its cultural representations are varied.
Doctors need to discover and interpret these keys in
communication in order to achieve consensus in end-of-
life care decision-making and organ donation.
Sweden Partly In principle no.
Switzerland Unfortunately not. According to the federal office for
public health, the option to make your own decision is
“the right”, whatever you decide.
We have very high refusal rates, more in German part
then in Italian or French part. The biggest problem is that
donors are not detected, or even do not reach the ICU,
and die on a general ward.
The
Netherlands
No, that is not a strong idea in our country. No
UK According to our view it is 50/50. Some medical
professionals believe very strongly that it is a right, but
others do not give it much thought.
There has been a lack of focus on what the barriers are.
It is not only the family saying ‘no’. A lack of a cohesive
system of: assessment of potential donors, testing,
approach, coordination with transplant services, etc., all
have a role in the low levels of donation.
TABLE 8 - Response to questions 14 and 15.
110 N.E. JaNsEN et al.
the practice of introducing the topic of organ donation
before confirmation of neurological death in the DBD
donor6, but that this change may be linked to pragmatic
decisions about the use of increasingly limited resources
in situations where a family may decline organ donation.
So, we have gathered some, if admittedly limited, evidence
that the moment of asking for organ donation is occur-
ring earlier in the trajectory of dying in the DBD donor.
Respondents suggest that the request for organ donation is
being made either before any brainstem tests are carried out,
as a means of deciding whether they will be carried out, or
after the first set of brainstem tests have been performed,
but before auxiliary testing, as a means of planning end of
life care.
More robust evidence is provided by de Groot et al. (4),
who completed a retrospective chart review of all brain
dead donors in one university hospital’s intensive care unit
in The Netherlands between 1987 and 2009. One of the
aims of this study was to determine whether the timing
of discussing organ donation with relatives of patients
who were diagnosed with a catastrophic brain injury had
changed over time. Results indicated that between 1987
and 1998, of the 228 cases reviewed, 87% fitted the sce-
nario of first discussion after determination of absence of all
brainstem reflexes and confirmation of whole brain death
by EEG and apnoea test, whereas between 1999 and 2009,
this practice happened in only 18% of cases. So more
recently, between 1999 and 2009, the usual practice was
to instigate the first discussion after testing for brain stem
reflexes but before confirmation of whole brain death by
auxiliary testing in 58% of cases; and in 24% of cases, the
first discussion took place after a discussion of catastrophic
brain injury, but before brainstem and auxiliary testing.
In their discussion of the reasons for this change, de Groot
et al. (4) propose the following explanations: the introduc-
tion of a donor register facilitating knowledge regarding
the potential donors’ views in relation to organ donation;
the introduction of a DCD programme in the hospital in
which the study was conducted, with the requirement for
physicians to discuss withdrawal of life support in patients
with brain injury but who were not brain dead; and the
pressure on ICU beds stimulating consideration of the fu-
tility of ongoing treatment. We see here the indication of
factors similar to those our own survey has suggested as po-
tentially impacting on the timing of the moment of asking.
Whilst it may be argued that moving the moment of asking
families about organ donation may be a pragmatic deci-
sion, it is important that the impact of no longer decou-
pling the determination of death and the request for organ
donation be considered in relation to family refusal rates:
de Groot and colleagues propose that the ‘high’ (sic) ongo-
ing refusal rates in The Netherlands may be associated with
the change in timing of the moment of asking.
ers that appear to be underpinning changes to the moment
of asking – such as the use of extended donor criteria or-
gans from elderly donors and the locality in which discus-
sions take place. In Spain, with elderly donors providing a
lower number of organs for transplantation and a reported
shortage of ICU beds, such potential donors are no longer
admitted to intensive care units for a diagnosis of brain
death. As indicated in the quotation below, discussions
with family members are increasingly taking place in the
Accident and Emergency Department as a means of de-
termining what the next step will be. Only those patients
considered to be suitable for organ donation, and where
families agree, will be moved into the ICU to undergo test-
ing to confirm death (22).
Furthermore, comments from in-country contacts in Swe-
den, Switzerland and Germany indicate that the approach
for organ donation is being made during discussions of
whether or not to continue intensive care treatment. If do-
nation is not agreed to by family members, testing to con-
firm death does not take place. This change suggests that
the requirement for confirmation that death has occurred
is perceived to be necessary only when organ donation is to
proceed, but not, as suggested in previous research, as part
of facilitating consent or of the grieving process (10-12).
Comments from The Netherlands point to another po-
tential driver, the time and cost of an EEG assistant and
neurologist to perform the mandatory EEG, and that of
an anaesthetist/intensivist performing the apnoea test.
Therefore ascertaining the wishes of the family concerning
donation early on will facilitate these services being put
in place if the family agrees to donation, and avoids the
need if the family declines. As all but one of the countries
contacted require that auxiliary testing be carried out when
diagnosing neurological death, these costs may play a more
important role in moving the moment of asking earlier in
the previously established temporal sequencing of i) con-
firming the neurological death of the potential donor, and
ii) the request for organ donation.
Reported changes to the moment of asking in the UK and
the Netherlands may be related to practice linked to DCD
category III donation, where donation must be requested
before the cessation of the heartbeat of the patient and after
an infaust prognosis (or decision about the futility of treat-
ment). This practice of linking the futility discussion and
the donation discussion may be being applied in the case
of DBD donors – since, as indicated above, if the patient
does not go on to full DBD, organs can still be donated
via a DCD procedure. However, in countries where DCD
donation is not implemented (Estonia, Sweden, Germany,
Poland, Croatia and Norway) contacts report changes in
practice or comment that there are variations in practice
across the country- This suggests that it is not the introduc-
tion or practice of DCD programmes that is stimulating
When are bereaved family members approached for consent to organ donation? … 111
Magi Sque contributed to the research design and revisions
of draft manuscripts.
Tracy Long-Sutehall contributed to the research design,
data collection and analysis and co-wrote the manuscript.
The authors declare that they have received no funding for the
present study and that they have no conflict of interest.
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The importance of the timing of the moment of asking
requires further research that takes into consideration the
issues and contexts of different countries in the light of cur-
rent practice and policy. Decisions about the moment of
asking may also benefit from being embedded within local
practices of care, including explicit ‘end of life’ care initia-
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Notes
1 Confirmed by auxiliary tests as per country guidelines.
2 Or authority (Scotland).
3 This may not be the case if family members, recognising
the futility of the situation, and knowing the wishes of the
deceased regarding donation, raise the issue with health
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4 It is important to note that guidelines are not mandatory.
5 It is well-known, and well-established in the literature,
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6 Only Croatia reported that the topic of organ do-
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Acknowledgements
We are grateful to all contributors of the questionnaire.
Without their input this article would not have been possible.
Authors’ contributions
Nichon E. Jansen led the research, orchestrated all data col-
lection and analysis and co-wrote the manuscript.
Maryon McDonald contributed to the research design and
revisions of draft manuscripts.
Bernadette J.J.M. Haase-Kromwijk contributed to the re-
search design and revisions of draft manuscripts.
112 N.E. JaNsEN et al.
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