Refusal of a parent to have a child
vaccinated against tetanus raised ethical issues
for the treating clinicians.
The clinicians felt their duty to the
child was compromised, but recognised that our
society leaves the authority for such decisions
with the parents.
As there was no reason, other than
different beliefs about vaccination, to doubt the
parent's care for the child, the clinicians
limited their response to providing strong
recommendations in favour of vaccination.
Other issues raised by this case
include community protection, and the costs to the
community of treating a vaccine-preventable
disease.
In unvaccinated
individuals, tetanus remains a constant threat.
In developing countries, neonatal tetanus is common
because of unhygienic practices, particularly with
regard to care of the umbilical cord stump.1-3
Such cases usually occur in children born to
unvaccinated mothers who have no antibodies to confer
protection on their infants. In developed countries,
where immunisation coverage is often higher and hygiene
is better, neonatal tetanus is almost unheard of. Older,
previously vaccinated adults (> 60 years) in whom
immunity has waned form the bulk of cases of tetanus1
(seven notified cases in adults over 55 years in 1998,
giving a notification rate of 0.2 per 100 000).4
In countries where there are high rates of
childhood immunisation, tetanus is rare among children.
For example, in South Australia, where more than 85% of
children are immunised, the last known case of childhood
tetanus occurred in 1969.4
Case report
Two weeks before presenting to
the Women's and Children's Hospital (WCH),
Adelaide, a two-year-old child had injured one
foot with a wood splinter, which had embedded in
the distal right sole proximal to the great toe.
Two days before admission, the splinter came out,
together with a small amount of pus. The next day
(one day before admission), one of the parents
took the child to a general practitioner because
of muscle spasms and inability to open the mouth.
Both the parent and the GP diagnosed tetanus. The
patient was admitted to the WCH with moderately
severe trismus and risus
sardonicus, but no spasms were observed
initially.
The child had not received any
vaccinations as the parent had conscientious
objections to this practice. Despite these
objections, the parent sanctioned the use of human
tetanus immunoglobulin (TIG), of which nearly 4000
IU were given (by slow intravenous infusion). At
the parent's request, and despite the lack of
clear indications for such treatment, a portion of
the TIG was infiltrated into the foot wound, which
was then surgically debrided. In addition, a
five-day course of metronidazole was commenced.
The day after admission to the
Paediatric Intensive Care Unit (hospital day 2),
the patient began having frequent (every few
minutes), moderately severe spasms, which were
managed with midazolam and magnesium sulfate.
Paralysis with curariform drugs and mechanical
ventilation was avoided. The patient was managed
in this way in a quiet, darkened room throughout
the hospitalisation and was discharged on sedation
after 18 days.
During the admission, a
recommendation was made to the parent on several
occasions that the child be given a course of
tetanus toxoid, because infection with
Clostridium tetani
does not necessarily confer immunity against
tetanus. Despite this advice, the parent refused
to consent, and the child was discharged
unvaccinated. The decision was based on the
parent's own beliefs. The other parent's position
was not proffered.
A child presenting to the Women's and
Children's Hospital, Adelaide, with tetanus (see
Box) raised various important ethical questions.
Ethical questions
Because this case raised difficult ethical
issues, a peer-group discussion was convened under the
auspices of the hospital's Patient Care Ethics Group.
This is a group of clinicians with a largely supportive
and advisory role and without authority to arbitrate on
the hospital's behalf. This forum provided diverse
points of view, with the aim of achieving the best
decision possible.
Deliberations covered all aspects of child
protection, the rights of the child and the rights of
the parents. The clinicians involved in the care of this
child had to decide how to respond when they considered
the parents to be making the wrong decision for their
child and to judge what should be the limits to the
right of parents to make decisions on behalf of their
children.
When a child succumbs to a
vaccine-preventable disease for which the parents have
refused vaccination, can such parents be said to be
acting truly in their child's best interests? Based on
toxin neutralisation assays in mice,3
and evidence of repeat episodes of tetanus arising from
re-infection with Clostridium
tetani,5-10we hold the view that immunity to
tetanus is not acquired by natural infection.3
On this basis, we were concerned that the patient
remained at risk (albeit very low) of subsequent
re-infection.
Do clinicians, acting in the interests of
the wider community, have the right to use cases such as
this to raise public awareness, with the hope of
improving levels of vaccination? Should community
pressure on parents to vaccinate their children be
increased, for example by limiting access to child care
services or school funding, or even by refusing school
entry for unvaccinated children?11
How should we think about the economic cost of treating
a child whose illness could have been prevented at
minimal expense?
Parental authority
In treating this patient, we felt our duty
to the child was compromised. However, vaccination in
Australia is not compulsory and the decision to
vaccinate, regardless of the clinical setting, remains
with the parent. The doctor has a responsibility to give
appropriate advice to the family: to provide
comprehensive and up-to-date information on the benefits
and unwanted effects of vaccination, as well as to offer
a considered opinion on the advisability of vaccinating
a particular person.
Our society (and most others) recognises
that parents, generally speaking, are in the best
position to make decisions for their children, for
several reasons.12
There is an identity-of-interests
argument: the values parents hold are likely to be
similar to their children's values, both now and
in the future, as parents contribute significantly
to their children's moral, psychological and
social development. Therefore, asking parents what
they think is a reasonable substitute for asking
the children themselves.
We tend to think that parents are
likely to be in the best position to judge the
best interests of their children. This is so
because the "caring love" that most parents
exhibit toward their children has at its core the
promotion of the child's best interests.13
Finally, and particularly important
at the policy level, someone
must speak for children and act on their behalf
when decisions need to be made. At a societal and
policy level, it is hard to imagine an alternative
to parental responsibility for children that would
not be incredibly burdensome for all involved.
Dealing with differences in doctors'
and parents' beliefs
How should we act when apparently
thoughtful, caring and reasonable parents reach
decisions that are not in accord with those of
healthcare professionals? There is a range of reasons
why healthcare professionals and patients do not always
agree.14
Many "irrational" decisions by competent people reflect
ways of thinking which others do not share. For example,
some people may have an unreasonable bias toward the
present, may give undue consideration to the risk of
suffering or pain, or fear may get in the way when they
are thinking about treatment. Alternatively, they may
assess risk in unusual, but thoughtful, ways, or their
belief systems may mean that choices that appear
irrational to others are reasonable for them. In some
cases, there may be a role for a psychiatric assessment
to help clarify whether an apparently irrational view
indicates that the parent is not competent to make the
decision, or whether it forms part of a belief system
that is against the best interests of the child. Menahem
and Halasz15
provide recommendations on ways to reduce the risk of
parental non-compliance, including building trust,
eliciting the aid of a parental partner, and organising
a second opinion, thereby improving the chances of a
successful outcome.
In this case, it is unlikely that the
parent was ill-informed or confused about the possible
implications of not vaccinating the child, if only
because of the experience of the child's serious illness
and hospitalisation. The parent may not have understood
the seriousness of tetanus before the child's stay in
hospital, but surely did after the event. The clinicians
involved also expended considerable effort to help the
parent understand the implications of not having the
child vaccinated. Hard as it may be for the healthcare
professionals involved, we are forced to accept that
this case is most likely an example of incommensurate
value systems. If the clinicians shared this person's
values and beliefs, they would likely reach the same
conclusion. If this person shared the clinicians'
beliefs, this child would have been vaccinated.
Faced with this conundrum, what could we
do? We limited our response to a strong recommendation
in favour of vaccination. Because parents are
prima facie the principal
decision-makers for their children, to override this
responsibility requires that healthcare professionals be
confident that the child will indeed be harmed, in both
the short and long term, if the parents' decision is
allowed to stand. In this case, the risk of significant
harm because of immunisation status alone is quite
small, given that tetanus requires both an injury and
the introduction of Clostridium
tetani spores and is not a communicable disease.
In addition, the child's long term need for care in a
loving and supportive environment could be jeopardised
if vaccination were forced on an unwilling family. There
is no reason, other than perhaps unusual beliefs about
vaccination, to question the parent's capacity to
provide an environment that served the child's best
interests.
None of this suggests that healthcare
professionals should not attempt to influence parents.
Healthcare professionals have an obligation to try to
persuade parents to do what the healthcare professionals
consider to be in a child's best interests, provided
this persuasion does not shade into manipulation or
coercion.16
In this case, we made repeated attempts to persuade the
parent while the child was in hospital. In addition, a
letter was sent to the parents conveying the views of
the medical team with respect to tetanus vaccination.
The letter clearly reflected that its writing had been
motivated by a duty of care on the part of the doctors
towards the patient's future health. A copy of the
National Health and Medical Research Council (NHMRC)
recommendations1
for tetanus vaccination was sent with the letter.
Community obligations
Doctors have an obligation to promote and
protect the health of the whole community. Communities
can expect to be protected from infectious diseases,
particularly when such protection is safe, relatively
inexpensive and easy to administer. For infectious
diseases other than tetanus, the effect on individual
and herd immunity by dissenting families can be a major
issue. However, this does not necessarily translate into
a requirement that all members of the community be
vaccinated whether they wish it or not. The best way to
balance a community's right to be protected from
infectious diseases with respect for individuals'
autonomous decisions not to be vaccinated (or to have
their children vaccinated) is by making vaccinations
effective and accessible to all.17
Not only does the community have a right to
protection from easily preventable infectious disease,
but the community must surely have a say in how their
tax dollars are best spent. There remains, therefore,
the right to question whether it is a misuse of the
healthcare system for individuals to seek cure for a
largely self-inflicted disease, or, as in this case, a
disease brought about by parental omission or choice.
Hlady WG, Bennett JV, Samadi AR,
et al. Neonatal tetanus in rural Bangladesh: risk
factors and toxoid efficacy.
Am J Public Health 1992; 82: 1365-1369.
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Jackson CL. State laws on
compulsory immunization in the United States.
Public Health Rep
1969; 84: 787-795.
<PubMed>
Dworkin G. The theory and practice
of autonomy. Cambridge: Cambridge University
Press, 1988; 85-99.
Douglas JD. Cooperative
paternalism versus conflictful paternalism. In:
Sartorius R, editor. Paternalism. Minneapolis,
Minn.: University of Minnesota Press, 1983;
174-200.
Brock DW, Wartman SA. When
competent patients make irrational choices.
N Engl J Med 1990;
322: 1595-1599.
<PubMed>
Menahem S, Halasz G. Parental
non-compliance a paediatric dilemma: medical and
psychodynamic perspective.
Child Care Health Dev 2000; 26: 61-72.
<PubMed>
Faden RR, Beauchamp TL. A history
and theory of informed consent. Oxford: Oxford
University Press, 1986.
Bradley P. Should childhood
immunisation be compulsory? J
Med Ethics 1999; 25: 330-334.
(Received 2 May,
accepted 6 Jun 2002)
Women's and Children's Hospital, North Adelaide, SA.
Paul N Goldwater, FRACP, FRCPA, Senior Consultant Clinical Microbiologist, Department of
Microbiology and Infectious Diseases; Richard
G Power, FRACP, MRCP(UK), Visiting Senior
Paediatrician, Department of Paediatric Medicine;
Paul H Henning, FRACP, Chair, Research Ethics
Committee; Terence G
Donald, FRACP, Director, Child Protection Services;
Jon N Jureidini, PhD, FRANZCP, Head, Department of
Psychological Medicine; Christine F Finlay,
RN, RM, Clinical Nurse Consultant.
Departments of Public Health and Paediatrics, University of
Adelaide, Adelaide, SA.
Annette J
Braunack-Mayer,
BMedSci(Hons), PhD, Lecturer in Ethics.
South Australian Immunisation Coordination Unit, Adelaide,
SA.
Mike S Gold, FRACP, MD, Paediatric Consultant.
Reprints: Dr P N Goldwater, Women's and Children's Hospital,
North Adelaide, SA 5006. goldwaterpATmail.wch.sa.gov.au
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DISCLAIMER: All
information, data, and material contained, presented, or provided here is for
general information purposes only and is not to be construed as reflecting the
knowledge or opinions of the publisher, and is not to be construed or intended
as providing medical or legal advice. The decision whether or not to vaccinate
is an important and complex issue and should be made by you, and you alone, in
consultation with your health care provider.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"