The Groningen Protocol for newborn euthanasia; which way did the slippery slope tilt?

Abstract

In The Netherlands, neonatal euthanasia has become a legal option and the Groningen Protocol contains an approach to identify situations in which neonatal euthanasia might be appropriate. In the 5 years following the publication of the protocol, neither the prediction that this would be the first step on a slippery slope, nor the prediction of complete transparency and legal control became true. Instead, we experienced a transformation of the healthcare system after antenatal screening policy became a part of antenatal care. This resulted in increased terminations of pregnancy and less euthanasia.

Full text

PAPER
The Groningen Protocol for newborn euthanasia;
which way did the slippery slope tilt?
A A Eduard Verhagen
Correspondence to
Dr A A Eduard Verhagen,
Department of Paediatrics,
University Medical Centre
Groningen, P.O. Box 30.001,
Groningen 9700 RB,
The Netherlands;
a.a.e.verhagen@umcg.nl
Accepted 4 February 2013
To cite: Verhagen AAE. J
Med Ethics 2013;39:
293–295.
ABSTRACT
In The Netherlands, neonatal euthanasia has become a
legal option and the Groningen Protocol contains an
approach to identify situations in which neonatal
euthanasia might be appropriate. In the 5 years
following the publication of the protocol, neither the
prediction that this would be the first step on a slippery
slope, nor the prediction of complete transparency and
legal control became true. Instead, we experienced a
transformation of the healthcare system after antenatal
screening policy became a part of antenatal care. This
resulted in increased terminations of pregnancy and less
euthanasia.
INTRODUCTION
It is widely known that The Netherlands was the
first country in the world to legalise euthanasia in
adults. Justification is based on the patient’s volun-
tary request (autonomy) and on the doctor’s assess-
ment of the patient’s hopeless prognosis and
unbearable suffering. Less well known, even among
the Dutch, is the fact that in The Netherlands neo-
natal euthanasia for severely defective newborn
babies is also legal under very narrowly defined cir-
cumstances. Although formal legal change has not
yet taken place, the legal development has devel-
oped far enough to be reasonably confident about
what Dutch law is on the subject.
1
One of the
reasons that legal developments have come about
was the strong confidence of the Dutch that legal
control could and should serve as a measure of
control of medical practice. Medical practice, in
turn, has been partly shaped by the consistent and
deeply rooted belief among Dutch doctors and the
public that in sick newborns and infants not all
options for treatment must always be used.
2–4
In
other words, some children might be allowed to
die, for example, if their prospects in life turn out
very grim. Even newborn euthanasia might be per-
missible in such situations.
In this paper, the gradual evolvement of that
concept over the last decade is described with an
emphasis on the developments regarding newborn
euthanasia. This description may be of particular rele-
vance, given the recent international discussions and
uproar in the media in response to a publication
about post-birth abortion.
5
The authors of that paper
argued that if abortion, at the parents’request, is
thought to be permissible under certain circum-
stances, then infanticide should also be permissible
under relevantly similar circumstances. As no other
society has legalised abortion and newborn euthanasia
under certain (strict) circumstances, the experiences
of the Dutch may be of value to others and contribute
to the discussion.
Basic words or descriptions such as withholding
or withdrawing life-sustaining treatment, terminal
care, life-ending measures, active ending of life, ter-
mination of life, neonaticide or infanticide, post-
birth abortion and neonatal euthanasia are often
used interchangeably, yet they convey very different
meanings to clinicians, patients, families and others.
Those different meanings can lead to unintentioned
confusion at the bedside, among healthcare provi-
ders, in the media and in the international debate,
and may result in potentially harmful consequences.
Clinicians rely on words, and so consistent use of
predefined terminology in highly precarious matters
such as medical end-of-life decisions about severely
ill newborns is very important.
In this paper, end-of-life (EoL) decisions are
medical decisions with the effect or the probable
effect that death is caused or hastened. They include
the decision to withhold or withdraw life-sustaining
treatment, the decision to administer medication with
potentially life-shortening effect to alleviate pain and
suffering and the decision to deliberately end the life
of physiologically stable newborns with lethal drugs
that otherwise would not have died. The term ‘neo-
natal euthanasia’is used for the latter decision.
END-OF-LIFE DECISIONS IN NEWBORNS, THE
SITUATION BEFORE 2005
Neonatal EoL decision-making in The Netherlands
has been studied quite intensely over the last
10–15 years. Two nationwide surveys in 1995 and
2001 showed that the majority (65%) of infants
younger than 12 months of age died because life-
sustaining treatment was withheld or withdrawn.
67
The decision to do so was made for babies with an
incurable disease and inevitable death in 60% of
cases. In the remaining group of patients, the deci-
sion was made for quality of life reasons and con-
cerned patients who might otherwise have lived if
this treatment had not been withheld or with-
drawn. Those studies also showed that in 1% of
all cases, medication was administered with the
explicit intention to hasten death. Based on these
data, it was estimated that at least 15–20 cases of
deliberate termination of life take place annually.
At that time, not many details about those babies
were available, except that they did not have any
life-sustaining treatment(s) (LST) that could be
withheld or withdrawn. Despite a legal obligation
for doctors to report those cases, and the acknow-
ledgment in two court cases that giving drugs to
hasten death was sometimes the most humane
Verhagen AAE. J Med Ethics 2013;39:293–295. doi:10.1136/medethics-2013-101402 293
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thing to do, only three cases of neonatal euthanasia per year
were actually reported and reviewed between 1997–2005.
8
We analysed those cases retrospectively and found that they all
concerned babies with complex inoperable congenital malfor-
mations (mainly spina bifida) combined with other complica-
tions and/or chromosomal abnormalities.
With only 15% to 20% of the estimated number of cases
being reported, the conclusion seems reasonable that the prac-
tice of neonatal euthanasia clearly existed before 2005 but it
was not at all transparent.
THE GRONINGEN PROTOCOL FOR NEONATAL EUTHANASIA
Our group developed an approach to identify situations in which
neonatal euthanasia might be appropriate and published the proto-
col for this in the New England Journal of Medicine in 2005.
9
This
protocol, known as ‘the Groningen Protocol for neonatal euthan-
asia’(GP), has five major criteria that make euthanasia permissible:
(1) diagnosis and prognosis must be certain, (2) hopeless and
unbearable suffering must be present, (3) a confirming second
opinion by an independent doctor, (4) both parents give informed
consent and (5) the procedure must be performed carefully, in
accordance with medical standards.
The trigger for us to make the protocol, at the time, was a
huge dilemma about what the best intervention would be for a
baby girl with the severest type of a lethal skin disease named
epidermolysis bullosa.
10 11
The disease caused excruciating pain
and suffering. The parents requested euthanasia and the doctors
agreed that the suffering was intolerable and hence the request
understandable. The legal threat of potentially being prosecuted
for murder or homicide, however, made us refuse the parents
request. We transferred the patient back to the referring paedia-
trician. When we were notified how the baby had died
3 months later, we decided to make a protocol that would help
us to choose euthanasia if that might be appropriate in future
cases. In addition, we wanted the protocol to help regulate the
practice of neonatal euthanasia and make it more transparent.
Its publication immediately generated an international contro-
versy
12–16
and forced doctors to analyse the differences between
the existing approaches in palliative care that are common in
many countries, such as withholding and withdrawing life-
sustaining treatment or the administration of high doses of nar-
cotics to relieve suffering, and the Dutch approach of actually
giving lethal medication to end life.
One of the main arguments raised against the GP was the ‘slip-
pery slope’argument: the GP is a first step down a slippery slope
and would lead to widely increased use of neonatal euthanasia
(erosion of norms). In addition, it was argued that ending the life
of a newborn is a violation of a doctor’s obligation to preserve
life and permitting doctors to do so will have a negative impact
on how the medical profession is perceived.
17 18
Those in favour
of the GP argued that the protocol allowed doctors to be openly
accountable for their decisions to all members of society. The
transparency of the process of reflection and action required by
the GP serves as a mechanism to strengthen the patient’s trust in
their doctor.
12
Legalisation is an effective way to regulate
end-of-life practice and make it more transparent.
1
Most people would probably recognise that evidence for most
of the ‘pro’and ‘con’arguments is very difficult to obtain. An
important question, however, and one that we thought might be
relatively easy to answer is: has either of the predictions come
true? Has euthanasia for neonates increased or decreased after
the implementation of the GP? Are cases reported? To answer
that question we analysed the data of the two studies that
reported how babies died in Dutch neonatal intensive care units
(NICUs) following publication of the GP, and reviewed all
reported euthanasia cases between 2001–2010.
THE SITUATION AFTER 2005: WHICH WAY DID THE
SLIPPERY SLOPE TILT?
Withholding and/or withdrawing life-sustaining treatment was
the mode of death in 95% of the patients dying in the
NICUs.
19 20
In 60% of cases, this concerned unstable babies
with an inevitable death while the remaining 40% was in stable
newborns for quality of life reasons. One newborn with type II
osteogenesis imperfecta was classified as neonatal euthanasia.
19
The attending doctor intentionally increased the morphine
medication until death occurred after it became evident that the
patient’s intolerable suffering could not be relieved otherwise.
They issued a certificate declaring the child’s natural death. The
medical team reviewed the case several weeks after the infant’s
death and concluded that in retrospect, their practice could best
be described as deliberate ending of life. The case was not
reported to the legal authorities.
Review of the reported euthanasia cases revealed that, follow-
ing the GP, euthanasia had decreased from 15 to 2 cases over
5 years.
21–23
The two cases were babies with lethal epidermoly-
sis bullosa. In spina bifida, euthanasia decreased from 15 to 0
cases. We tried to find out why this was. Starting in 2007, struc-
tural ultrasound examination at 20 weeks was offered to all
pregnant women at no extra cost. Before that time, access to
ultrasound screening was only available for women above
35 years of age and/or on strict medical indication. The reports
published by the registry of congenital malformation and by the
national registry for termination of pregnancy (TOP) showed a
significant increase of TOP before the 24th week of foetuses
with spina bifida after 2007 in comparison to the preceding
5 years.
24
These findings yield the conclusion that a transform-
ation of the healthcare system (antenatal screening policy
became a part of antenatal care) resulted in increased abortions
and fewer incidences of euthanasia. In addition, it seems fair to
conclude that the effects of the GP were totally different from
those predicted by either supporters or critics.
ARE ALL CASES REPORTED?
The apparently very low reporting rate may be totally explainable
by the developments in prenatal screening as stated above.
However, one cannot exclude the possibility that doctors might
still be hesitant to report their case after their patient died from
euthanasia. Certainly, the reporting has become easier because
the requirements for due practice and the legal position of the
doctor have been made much clearer by the GP. In addition, the
government has helped to lower the doctors’barrier to reporting
by adjusting the reporting procedure in that the initial reporting
would be made to a multidisciplinary committee of experts (con-
sisting of ethicists, doctors and legal people) instead of the pros-
ecuting office. This committee has been in place since 2007.
One of the possible reasons for the low reporting rate could
be that different healthcare providers still define newborn
euthanasia differently. The use of paralysing medication at the
end of a newborn’s life in the NICU, as described in two recent
studies,
25 26
may serve as an example. Some Dutch doctors
administer this medication, which is similar to the medication
used for euthanasia, on parental request to stop the gasping
efforts of the dying baby. They do not consider their action as
euthanasia but as symptom management and part of palliative
care. Those cases are never brought to the committee.
Consensus among the medical profession has not yet been
reached on this delicate issue, but it probably will be after the
294 Verhagen AAE. J Med Ethics 2013;39:293–295. doi:10.1136/medethics-2013-101402
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publication of a report by the Dutch Medical Association on
this subject in 2013. The report is expected to contribute to
even more transparency of medical practice and more efficient
legal control.
CAN EUTHANASIA EVER BE PREFERRED OVER OTHER
LIFE-ENDING INTERVENTIONS?
The finding of increased abortions and less euthanasia following
the introduction of prenatal screening raises the interesting
question about the moral difference between euthanasia and
abortion. It can be argued that for some patients, neonatal
euthanasia might be preferable to second trimester termination.
The level of certainty available to establish the diagnosis and
prognosis, for example in babies with congenital malformations,
is often much lower at 20 weeks in comparison to the situation
after birth. After birth, the medical team and the parents will
have much more time to plan the diagnostic procedures needed
to increase the quality of the diagnosis and prognosis. More
time (and more expertise) might be available to discuss with the
parents about all the treatment options including the option of
palliative care. If all stakeholders conclude that the prognosis is
very grim, the babies condition is judged as one with sustained
and intolerable suffering, and the parents request for euthanasia,
why should that not be permissible as an alternative to second
trimester termination? In addition, the question can be raised
what the moral difference is between euthanasia and withhold-
ing feeding and hydration? This question has gained importance
after the publication by Diekema et al
27
and the American
Academy of Pediatrics (AAP) Committee on Bioethics.
27
After
reviewing the medical, ethical and legal issues relevant to the
withholding or withdrawing of medically provided fluids and
nutrition in children, they conclude that withdrawal thereof is
ethically acceptable in limited situations. The practice of with-
holding feeding and hydration is another example of an
approach in palliative care that might need rethinking. I’d like
to argue that for some patients and/or parents, neonatal euthan-
asia might be preferable to withholding feeding and hydration.
Especially in the situation, although rare, that every hour every
day of life imposes an intolerable burden on the baby and the
parents. The outcome in such a situation is clear: the baby will
die soon; If the parents wish to shorten that course, and organ-
ise their child’s death more in the way they have envisioned it,
shouldn’t euthanasia be available for them?
CONCLUSIONS
In The Netherlands, neonatal euthanasia has become a legal
option and the Groningen Protocol contains an approach to
identify situations in which neonatal euthanasia might be appro-
priate. In the 5 years following the publication of the protocol,
neither the prediction that this would be the first step on a slip-
pery slope, nor the prediction of complete transparency and
legal control became true. Instead, we experienced a transform-
ation of the healthcare system after antenatal screening policy
became a part of antenatal care. This resulted in increased ter-
minations of pregnancy and fewer instances of euthanasia.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
REFERENCES
1 Griffiths J, Weyers H, Adams M. Termination of life in neonatology. Euthanasia and
Law in Europe. Oxford and Portland, Oregon: Hart Publishing, 2008:217–55.
2 Nederlandse Vereniging voor Kindergeneeskunde. Doen of laten. Grenzen van het
medisch handelen in de neonatologie (To treat or not to treat? Limits for
life-sustaining treatment in neonatology). Utrecht: Den Daas, 1992.
3 KNMG Commissie Aanvaardbaarheid Levensbeeindigend handelen. Medisch
handelen rond het levenseinde bij wilsonbekwame patiënten. Houten: Bohn Stafleu
Van Loghem, 1997.
4 Overleggroep toetsing zorgvuldig medisch handelen rond het levenseinde bij
pasgeborenen. Toetsing als spiegel van de medische praktijk (Assesment as mirror
of medical practice). Rijswijk: Ministerie van Volksgezondheid Welzijn en Sport,
1997.
5 Giubilini A, Minerva F. After-birth abortion: why should the baby live? J Med Ethics
2013;39:261–3.
6 van der Heide A, van der Maas PJ, van der Wal G, et al. Medical end-of-life
decisions made for neonates and infants in the Netherlands. Lancet 1997;350
(9073):251–5.
7 Vrakking AM, van der Heide A, Onwuteaka-Philipsen BD, et al. Medical end-of-life
decisions made for neonates and infants in the Netherlands, 1995–2001. Lancet
2005;365(9467):1329–31.
8 Verhagen AA, Sol JJ, Brouwer OF, et al. Actieve levensbeeindiging bij pasgeborenen
in Nederland; analyse van alle 22 meldingen uit 1997/’04. (Deliberate termination
of life in newborns in The Netherlands; review of all 22 reported cases between
1997 and 2004). Ned Tijdschr Geneeskd 2005;149(4):183–8.
9 Verhagen E, Sauer PJ. The Groningen protocol—euthanasia in severely ill
newborns. N Engl J Med 2005;352(10):959–62.
10 Crouch G. A crusade born of a suffering infant’s cry. New York Times 19 March
2005; Sect A:4.
11 Yuen WY, Duipmans JC, Molenbuur B, et al. Long-term follow-up of patients with
Herlitz-type junctional epidermolysis bullosa. Br J Dermatol 2012;167(2):374–82.
12 Lindemann H, Verkerk M. Ending the life of a newborn: the Groningen Protocol.
The Hastings Center Report 2008;38(1):42–51.
13 Chervenak FA, McCullough LB, Arabin B. Why the Groningen Protocol should be
rejected. The Hastings Center report 2006;36(5):30–3.
14 Kon AA. Neonatal euthanasia is unsupportable: the groningen protocol should be
abandoned. Theor Med Bioeth 2007;28(5):453–63.
15 Jotkowitz A, Glick S, Gesundheit B. A case against justified non-voluntary active
euthanasia (the Groningen Protocol). Am J Bioeth 2008;8(11):23–6.
16 de Vries MC, Verhagen AA. A case against something that is not the case: the
Groningen Protocol and the moral principle of non-maleficence. Am J Bioeth
2008;8(11):29–31.
17 Nuffield Council on Bioethics. Decision making: ethical issues. Critical care decisions
in fetal and neonatal medicine. London: Nuffield Council on Bioethics, 2006.
18 Costeloe K. Euthanasia in neonates. BMJ 2007;334(7600):912–13.
19 Verhagen AA, Dorscheidt JH, Engels B, et al. End-of-life decisions in Dutch neonatal
intensive care units. Arch Pediatr Adolesc Med 2009;163(10):895–901.
20 Verhagen AA, Janvier A, Leuthner SR, et al. Categorizing neonatal deaths: a
cross-cultural study in the United States, Canada, and the Netherlands. J Pediatr
2010;156(1):33–7.
21 Commitee Late Termination of Pregnancy and Termination of Life in Newborns
(Commissie Late Zwangerschapsafbreking en levensbeeindiging bij pasgeborenen).
Annual report 2009–10 ( Jaarverslag 2009–10), 2010. http://www.lzalp.nl/
documentatie/ (accessed 21 Jan 2013).
22 Commitee Late Termination of Pregnancy and Termination of Life in Newborns
(Commissie Late Zwangerschapsafbreking en levensbeeindiging bij pasgeborenen).
Annual report 2008 ( Jaarverslag 2008). 2010. 2008. http://www.lzalp.nl/
documentatie/ (accessed 21 Jan 2013).
23 Commitee Late Termination of Pregnancy and Termination of Life in Newborns
(Commissie Late Zwangerschapsafbreking en levensbeeindiging bij pasgeborenen).
Annual report 2007 ( Jaarverslag 2007). 2007. http://www.lzalp.nl/documentatie/
(accessed 21 Jan 2013).
24 Jaarrapportage 2007 van de Wet afbreking zwangerschap (2007 Annual Report
on the Termination of Pregnancy Act). Den Haag: Inspectie Volksgezondheid
(The Netherlands Health Care Inspectorate), 2008 November.
25 Verhagen AA, Dorscheidt JH, Engels B, et al. Analgesics, sedatives and
neuromuscular blockers as part of end-of-life decisions in Dutch NICU’s. Arch Dis
Child 2009;94:F434–8.
26 Janvier A, Meadow W, Leuthner SR, et al. Whom are we comforting? An analysis of
comfort medications delivered to dying neonates. J Pediatr 2011;159(2):206–10.
27 Diekema DS, Botkin JR. Clinical report—forgoing medically provided nutrition and
hydration in children. Pediatrics 2009;124(2):813–22.
Verhagen AAE. J Med Ethics 2013;39:293–295. doi:10.1136/medethics-2013-101402 295
The argument
on May 29, 2021 at University of Groningen. Protected by copyright.http://jme.bmj.com/J Med Ethics: first published as 10.1136/medethics-2013-101402 on 1 May 2013. Downloaded from