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EMPIRICAL ETHICS
Obtaining consent for organ donation from a
competent ICU patient who does not want to live
anymore and who is dependent on life-sustaining
treatment; ethically feasible?
Jelle L Epker*, Yorick J de Groot†and Erwin J O Kompanje*
*Department of Intensive Care, Erasmus MC University Medical Center, PO Box 2040, 3000 CA Rotterdam, The Netherlands;
†
Department of Anaesthesiology, University Medical Center Utrecht, The Netherlands
Corresponding author: Jelle L Epker E-mail: j.epker@erasmusmc.nl
Abstract
We anticipate a further decline of patients who eventually will become brain dead. The intensive care unit
(ICU) is considered a last resort for patients with severe and multiple organ dysfunction. Patients with
primary central nervous system failure constitute the largest group of patients in which life-sustaining
treatment is withdrawn. Almost all these patients are unconscious at the moment physicians decide
to withhold and withdraw life-sustaining measures. Sometimes, however competent ICU patients
state that they do not want to live anymore because of the severity of their illness or the poor prognosis
and ask for withdrawal of life-sustaining measures like mechanical ventilation. Do we consider the
unconscious patient as potential organ donor before withdrawal of mechanical ventilation? This is
paradoxically rare in the case of the conscious ICU patient. Is it practically possible and ethically
feasible to obtain consent for organ donation from this group of patients?
Introduction
Since the first observational descriptions of brain dead
patients by French and German neurologists in the late
1950s, many thousands of artificially ventilated patients
in intensive care units worldwide have been declared
dead after the determination of irreversible failure of deter-
mined brain functions, and in almost all cases in favour
of organ donation for transplantation.
1,2
Brain death has
always been a rare outcome of intensive care treatment
of patients with severe brain damage due to traumatic
brain injury, or severe forms of stroke (subarachnoid haem-
orrhage [SAH] and intracerebral haemorrhage). Recently
it was demonstrated that the percentage contribution of
brain dead organ donations to the total of organ donations
has been decreasing significantly in the Netherlands in the
past 15 years.
3
Due to changes in demographics, increased
traffic safety, improved treatments like early coiling of
cerebral aneurysms and legislation prohibiting smoking
(an important risk factor for SAH) in public places we
anticipate a further decline of patients who eventually
will become brain dead.
3
Considering the fact that the
brain dead donor is the ideal organ donor, since only
when brain dead is diagnosed there’s the possibility
to procure the heart and the organs will generally have
a better quality, an anticipated decline in brain dead
donors means a further setback for transplantation medi-
cine. Therefore many initiatives are developed and
deployed in order to decrease the gap between patients
awaiting an organ and the number of actual organ
donors. These initiatives include a better organization of
donor care on a national, regional and hospital level
inspired by the Spanish model or a change in the system
of consent.
4
Several European countries like Spain,
France, Belgium, Austria and Sweden adapted a form of
Jelle L Epker, MD (1972) studied medicine from 1991 to 1998 and
specialised in general and intensive care medicine. Since 2006 he has
been a staff member of the Department of Intensive Care of the Erasmus
MC. Fields of interest are: intensive care neurology and end-of-life issues;
the letter is the subject of his PhD thesis research.
Yorick de Groot is resident anesthesiologist at the Department of
Anesthesiology, Intensive Care and Emergency Medicine at the
University Medical Center in Utrecht. He obtained his PhD in 2012
with the thesis ‘Organ Donor Recognition, practical and ethical
considerations’ at the Department of Intensive Care, Erasmus MC
Rotterdam.
Erwin J O Kompanje (1959) is a clinical ethicist specialising in intensive
care medicine and senior researcher at the Department of Intensive Care
of the Erasmus MC in Rotterdam. His fields of interest are: informed
consent, brain death and organ donation, and withdrawal of treatment
and palliative care on the ICU.
DOI: 10.1177/1477750912474762 Clinical Ethics 2013; 8:29–33
presumed consent or opt-out.
5
Some North European
countries like the UK, Denmark Germany and the
Netherlands have considered a system of opt-out but even-
tually choose to maintain their current system of opt-in.
6,7
Taking into account the diminishing supply and the
growing need for organ transplantation, one has to
pursue and analyse every potential area of improvement.
The intensive care unit (ICU) is considered a last
resort for many patients with severe and multiple organ
dysfunction. Therefore it is the hospital department with
the highest mortality rate. Approximately 15% of all
admitted patients die on a mixed ICU. End of life care is
considered a vital part of the ICU. The majority of the
patients who die on the ICU die as a result of withholding
or withdrawing life sustaining treatment.
8
According to
a paper by Sprung et al.
9
the primary reasons for the
end of life decisions are unresponsiveness to therapy
(no diagnosis reported in the paper), neurological
reasons, chronic disease and multiorgan failure. In a
recent paper, Verkade et al.
10
studied the incidence of
withdrawal of life-sustaining treatment in various group
of patients in a single centre, mixed ICU in the
Netherlands. Patients with primary brain failure consti-
tuted the largest group of patients (86/174, 49.4%) in
which life-sustaining treatment was withdrawn.
Specifically this group of patients is most likely to be eli-
gible to eventually donate organs after death, but only a
few will eventually reach the state of brain death. For
this reason donation of organs after circulatory death is
increasingly considered. In the Netherlands the number
of donations after circulatory death increased from 118
patients in the period 1995– 1999 to 453 patients in the
period 2005– 2009 according the annual reports of the
Dutch Transplant Foundation.
3,11
At the same time the
amount of brain dead organ donors is significantly declin-
ing. Nowadays in many countries, organ donation after cir-
culatory death forms an important source for kidney, liver
and lung transplantation. All these patients are deeply
unconscious or deeply sedated at the moment life-
sustaining measures are withdrawn.
12
However sometimes competent ICU patients, who are
dependent on intensive care measures like mechanical
ventilation, state that they do not want to live anymore
because of the severity of their illness and the poor progno-
sis and ask for withdrawal of life-sustaining measures in
order to die.
13
In most cases in the Netherlands, the auton-
omy of these patients is respected and life-sustaining treat-
ment is then indeed withdrawn. Recently we described two
conscious patients who died on the ICU after they asked
for withdrawal of life sustaining treatment.
13
In which
way do they differ, besides the level of consciousness,
from the other patients in which we withdraw treatment
and in which we consider organ donation? Why do we
not consider these conscious patients as potential organ
donors before withdrawal of mechanical ventilation?
There is some experience with organ donation after
planned deliberate termination of life (euthanasia) in
Belgium,
14,15
but we are not aware of documented cases
in which ICU physicians ask patients, before withdrawal
of life-sustaining treatment, if they are willing to donate
their organs after death. In the light of the scarcity of
organ donors, perhaps we have to reconsider this point
of view. The aim of this paper is to discuss the pros and
cons of such a change in end of life care, focusing on
the current ethics and the practical feasibility.
Scenarios
The following two cases that have been selected to engage
the discussion of ethics.
Patient A, a 45-year-old electrician, is admitted to the
general ICU after a fall from a ladder. The fall resulted in
fractures of three cervical and one lumbar vertebra, and
mild traumatic head injury. During his stay on the ICU
he shows no improvements of his tetraplegic status. In
the weeks thereafter it is impossible to wean the patient
from the mechanical ventilator. He eventually regains
full consciousness and can communicate with eye blinking
and later by lip reading. He is informed about his clinical
situation. The patient is well aware of his situation and
the unavoidable restrictions for his future daily activities.
Several weeks after admission, he repeatedly expresses a
clear wish to have life sustaining treatment withdrawn
and asks the ICU team to take him off the mechanical
ventilator. After several deliberations between family
members, various physicians, nurses and a clinical ethicist
we agreed to offer him, according to his will, deep pallia-
tive sedation, followed by withdrawal of life sustaining
treatment. After initiation of intravenous administration
of midazolam the patient enters a deep sleep. Inotropic
support and mechanical ventilation were withdrawn.
After 15 minutes the patient died peacefully in the pres-
ence of his family.
Patient B a 45-year-old business administrator, is
admitted to the ICU with severe neurological injury
after a high-speed road traffic accident. A computed tomo-
graphy scan shows several subdural haematomas, a skull
fracture and compression of the brainstem. Because of
the low Glasgow Coma Score (GCS) score the patient is
intubated and connected to a mechanical ventilator.
When the patient is neurologically assessed by a neuro-
surgeon he has a GCS of E
1
M
1
V
1
, an absent pupil and
corneal reflexes. However because of some intact brain-
stem reflexes the patient is not considered to be brain
dead. After several weeks of ICU treatment, the patient
shows no neurological improvement. In a multidisciplinary
meeting it is decided to withdraw life-sustaining treatment
based on the poor prognosis of the patient. When discuss-
ing this decision with the family, the treating physician
also mentions the option of organ donation. Because the
patient is not registered in the national donor register,
the relatives of the patient are mandated by law to make
the decision regarding organ donation. After much discus-
sion they agree with organ donation according to the
protocol of donation after circulatory death (DCD). In
the presence of the family the mechanical ventilator and
other life sustaining therapy are withdrawn. The patient
dies after 30 minutes of cardiopulmonary arrest. After
30 Epker et al.
Clinical Ethics 2013 Volume 8 Number 1
the mandatory five-minute ‘no-touch’ period the patient is
transferred to the operation theatre for organ retrieval.
Discussion
When comparing both scenarios there are many simi-
larities but also some important differences. Both patients
die as result of an action, namely the withdrawal of life-
sustaining measures, which is done by the physician after
multidisciplinary deliberation.
16
While in the first scenario
the patient explicitly asks for the withdrawal of life sustain-
ing measures in order to die, in the latter case the decision
is made by a multidisciplinary group of physicians and
other health-care workers. Both patients were suitable
for organ transplantation after death but only the second
patient donated his organs after the physicians asked
consent of the family. The other, conscious, patient
could have decided if he wanted to donate one or more
organs, but was never approached with the question con-
cerning organ donation.
Essential in the decision process surrounding the
withdrawal of life-sustaining treatment in patients who
are awake, as we discussed in detail in our previous
paper, is respect for the autonomy of the patient. Dutch
care-givers have to respect, by law (medical treatment
agreement act [Wet Geneeskundige Behandelings
Overeenkomst]), the wishes of the patient if they are
understandable and within the accepted possibilities of
medical care.
17,18
This also implies that a doctor is not
allowed to start or continue a treatment that is not
wanted by the patient. This is clearly stated in article
450 of the above-mentioned law: ‘For all actions and treat-
ments within the treatment contract the explicit approval
of the patient is needed’. So there has to be no doubt con-
cerning the cognitive functioning and competency of the
patient.
13
According to Beauchamp and Childress an
autonomous action should be made by someone (1) who
acts intentionally, (2) with understanding of the conse-
quences at hand and (3) without controlling influences
that determine their action.
19
In the first case the decision
to withdraw life-sustaining therapy is made by the treating
physician after the explicit request of the patient. The
patient made this request with the knowledge that the
withdrawal of the mechanical ventilator and inotropic
medication will result in a certain death. He acted inten-
tionally with the limited means of communication he
had at his disposal and family or friends did not influence
his actions. Nevertheless he was not asked if he wanted to
use the option of donating organs after his death.
The ethical basis of deciding to donate organs after
death is that it is ideally an autonomous choice, made by
the individual when he or she was healthy of mind. The
central donor registry, which is an essential tool with
regard to organ donation in the Netherlands, is based
on this same respect for patient autonomy.
20
When an
individual decides that he or she wants to donate
organs or tissues after death, then this is effectuated, if
possible, in almost all cases. In the case of no registration
in the donor registry, the relatives of the patient are
approached to consider permission for organ removal
after death of the patient, as is described in the second
scenario.
In the Netherlands, individuals can ask a physician for
withdrawal of treatment, but also for intentional termin-
ation of life. This presupposes absolute voluntariness
(seen from the patient) and a deliberate act (seen from
the physician). It excludes every form of intentional,
active, direct, non-voluntary termination of life. In the
Dutch ‘Termination of Life on Request and Assisted
Suicide Act’, the requirements of due care are described.
21
This above-mentioned Act requires that the physician:
Holds the conviction that the request by the patient is
voluntary and well considered;
Holds the conviction that the patient’s suffering is lasting
and unbearable;
Has informed the patient about the situation and about
the prospects;
Holds the conviction that there is no other reasonable
alternative in the light of the patients situation;
Has consulted at least one other independent physician
who must have seen the patient and given a written
opinion on the due care criteria;
Has terminated a patient’s life or provided assisted suicide
with due medical care and attention.
The same requirements, with exception of the last, are
applicable for the scenario in which a competent patient
on the ICU asks for termination of mechanical ventilation
and other life-sustaining measures. In such a situation,
taking the above-mentioned requirements in consider-
ation, the request has to be taken seriously. If approved,
the patient is brought to sleep with sedatives after which
mechanical ventilation is withdrawn and the patient
dies. Euthanasia (deliberate termination of life after injec-
tion of euthanatica) is very rare in the ICU setting in the
Netherlands.
22
Withdrawal of life-sustaining measures is
however common.
8,9,12
Why then do we not just ask patients before with-
drawal of mechanical ventilation whether they are
willing to donate their organs? There are four arguments
that can explain why the patient is not confronted with
the donation request:
(1) The patient is not recognized as a potential donor;
(2) There is fear of creating a conflict of interest;
(3) There is fear of creating a self-fulfilling prophecy;
(4) There is fear of harming the doctor-patient relation.
The most obvious reason why the patient is not
approached is probably because he’s simply not recognized
as a potential donor. In the, often emotional, process of
handling the patient’s request of withdrawing treatment,
the focus of the medical team will primarily be on the
legal and ethical issues involved with that process and
therefore the possibility of organ donation will just not
enter their mind in that stage. Since there is, until now,
no documented experience with organ donation in these
situations, the likelihood that this way of thinking will
Obtaining consent for organ donation 31
Clinical Ethics 2013 Volume 8 Number 1
change in short term is not great, thereby creating inevita-
bly a vicious circle.
Some scholars will reason that a conflict of interest
will arise in such a situation, but we do consider this a
moral fiction. The autonomous patient asks voluntarily
for termination of life (as in the Belgium cases of organ
donation described by Ysebaert et al.
14
) or termination
of life sustaining measures. It is important to realize that
it is not the physician who initiated this, but the patient
himself. The physician follows the voluntary and well-
considered request. What if the patient asks, besides the
request for termination of life or withdrawal of mechanical
ventilation, for organ donation after death? Do we have
reasons to reject this? We cannot conclude this. We there-
fore argue that there are no moral objections for asking
the patient for organ donation if the request for life termi-
nation or withdrawal of ventilation is granted. A conflict
of interest can only then arise when the physician
himself initiates the process of considering withdrawing
of life support for the patient. Although we certainly
appreciate an open patient/physician relationship in
which all aspects of treatment can be discussed, the initiat-
ive for withdrawing treatment in a conscious patient (in
analogy with euthanasia) should always come from the
patient alone. A ‘helping hand’ in this decision process
is indeed, in cases like this, the key to an unwanted con-
flict of interest.
Another point of concern that some will mention is
the introduction of a potential self-fulfilling prophecy.
At this moment when this patient category is not yet
recognized as a potential donor this risk is negligible.
However, when this changes, the general public may be
inclined to think that physicians would be tempted to be
deliberately pessimistic about the patient’s prognosis to
enhance the patient change of request for withdrawal of
treatment. Although this is a non-rational factor, it is
unfortunately in concurrence with the documented fear
of the general public that doctors will be tempted to pre-
maturely declare death in order to procure organs.
23
Distrust of society and henceforth a negative discussion
in the lay press, although non-rational, should be regarded
as a real threat for the proposed scenario.
In fact, all the arguments proposed in this paper are
within Dutch law. Moreover the corner stone for this
proposal is that the patient himself must first ask for treat-
ment withdrawal and a second (independent) physician
must approve. Therefore it is almost impossible to create
a self-fulfilling prophecy in this scenario. The proposed
scenario is in fact fully in line with, the generally well
supported intention of the Organ Donation Act in the
Netherlands; giving everyone the chance to donate his
or her organs after dying.
24
A last argument that may be put against this proposal
is the fact that the patient himself may experience pressure
in the choice he has to make. Some will argue that the
patient will be aware of the fact that ‘yes’ to the donation
question is the desired answer and since the patient is
dependent on his physician to withdraw treatment and
the provision of care in that process, the patient may
feel forced to give an answer that pleases the care-giver,
even though it may be in contradiction with his personal
values. However, a patient that dares to ask his treating
physician to stop a treatment that has been supported
by his physician shows already a high level of self-
differentiation. The fact that both doctor and patient
have been able to discuss such a delicate matter together
gives proof of a well-formed doctor –patient relationship.
Therefore we think it’s highly unlikely that a well self-
differentiated patient with a good doctor– patient relation
will be tempted to choose something that is against his
own principles or values in such a situation.
Organ donation after circulatory death is legally and
ethically accepted in many Western countries, taking
the dead donor rule in consideration. The dead donor
rule is the ethical and legal rule that requires that donors
are not to be killed to obtain their organs.
25
The dead
donor rule is vital for the donation and transplantation
system and helps to maintain the public trust in organ
donation after death. After five minutes of circulatory
arrest with no ventilation the patient is considered dead
and organ removal can take place. The situation is equal
in cases where an unconscious patient with devastating
neurological damage dies after withdrawal of mechanical
ventilation, as in cases where a sedated patient, who was
conscious before sedation, dies after withdrawal of mech-
anical ventilation. Both patients are then equal and suit-
able for organ donation. For this reason we see no
obstacles for organ donation in the described context.
Conclusions
In a medical community in which withdrawal of life-
sustaining measures in unconscious and in conscious
ICU patients is accepted, where organ donation after
death is common practice, and in which there is a shortage
of organs for transplantation, there can be no moral objec-
tion to ask certain conscious ICU patients to donate their
organs after death. Although withdrawal of mechanical
ventilation on request of the patient on the ICU is rare
and therefore the number of organs that come available
is limited, it is still well worth considering. We argue
that there are no valid moral and legal objections against
it; it is ethically feasible and practically possible to ask
the patients for organ donation after death.
Conflict of interest: None.
Funding: None.
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