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When Parents Reject Interventions to Reduce Postnatal Human Immunodeficiency Virus Transmission
Leslie E. Wolf, JD, MPH;
Bernard Lo, MD;
Karen P. Beckerman, MD;
Alejandro Dorenbaum, MD;
Sarah J. Kilpatrick, MD, PhD;
Peggy S. Weintrub, MD
Arch Pediatr Adolesc Med. 2001;155:927-933.
ABSTRACT
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In a recent Oregon case, the state successfully sued for custody of
an infant to prevent his human immunodeficiency virus (HIV)–infected
mother from breastfeeding him and to require antiretroviral prophylaxis. As
more HIV-infected women give birth, pediatricians may increasingly face dilemmas
when parents reject medical recommendations to forgo breastfeeding and to
administer antiretroviral prophylaxis to the infant. Such disagreements create
ethical dilemmas because pediatricians have an obligation to both protect
the infant and respect parental decision making. Pediatricians need to balance
these obligations in deciding whether to ask the courts to intervene on the
infant's behalf. To that end, we analyze the legal and ethical issues that
arise when an HIV-infected mother refuses interventions to reduce neonatal
transmission of HIV to her infant, provide an approach for addressing these
disagreements, and present illustrative scenarios in which pediatricians should,
may, and should not seek a court order to intervene.
INTRODUCTION
Kathleen Tyson tested positive for human immunodeficiency virus (HIV)
during a prenatal test.1 Although Tyson initially
accepted treatment with zidovudine, she stopped treatment after she and her
husband became persuaded that HIV does not cause acquired immunodeficiency
syndrome (AIDS) and that zidovudine is unsafe and ineffective.1, 2, 3
Accordingly, Tyson refused zidovudine for herself during labor and for her
son, Felix, after delivery.2, 3
Tyson began to breastfeed Felix in the hospital. On the night he was born,
a state social worker came to Tyson's room with an armed police officer to
persuade her not to breastfeed Felix. When Tyson refused, the social worker
gave the parents a summons to appear in court and a protective order for the
newborn.4
Within days of Felix's birth, a custody hearing was held. The Tysons
agreed to abide by a court order to administer zidovudine prophylaxis to Felix
and to bottle-feed. The court allowed them to retain physical custody of Felix
but awarded the state legal custody and medical decision-making authority
on Felix's behalf.4 Felix tested negative for
HIV at birth, 1 month, and 6 months.5, 6
The state continues to monitor Felix to ensure compliance with the court's
order.7 While the custody case was pending,
Tyson pumped her milk and froze it so she would be able to breastfeed Felix
if the order were lifted.1
Mother-to-child transmission (MTCT) of HIV can be significantly reduced
by antiretroviral therapy to the mother and infant and by forgoing breastfeeding.8, 9, 10, 11, 12, 13, 14, 15
However, as the Tyson case shows, some seropositive, pregnant women may refuse
antiretroviral therapy during pregnancy, labor, and delivery and/or refuse
antiretroviral prophylaxis for the infant and insist on breastfeeding. Such
refusals raise ethical dilemmas because the well-being of the infant may conflict
with parental preferences for child rearing and medical care. Although courts
have ordered such interventions, intervening on the fetus's behalf before
birth over the woman's objection is ethically problematic because it requires
bodily invasion of the mother.16, 17, 18, 19
After birth, it becomes possible to provide interventions directly to the
infant. The ethical principle of beneficence, which is fundamental in pediatrics,
supports the urge to intervene postnatally to administer antiretroviral therapy
to HIV-exposed infants and to require bottle-feeding because infants cannot
protect themselves and these interventions are effective and generally accepted.
However, the same principle encourages pediatricians to respect parental choices
because parents are the most appropriate arbiters of their children's best
interests. To address this dilemma, we first analyze the legal and ethical
issues that arise in such cases. Although intervention in such cases may be
permissible under legal and ethical principles, appeal to these principles
alone does not resolve the dilemma. Accordingly, we provide an approach for
addressing these disagreements that involves clarifying the medical risks
and benefits, clarifying the social risks and benefits, understanding the
parents' reasons for refusal, and exploring available options. Finally, we
present illustrative scenarios in which pediatricians should, may, and should
not seek a court order to intervene on the infant's behalf.
ETHICAL BACKGROUND
Ethically, as well as legally, parents are presumed to be the appropriate
decision makers for their children.20 In the
United States, parents are granted considerable autonomy to raise children
in accordance with their values and beliefs, with the expectation that love
will guide parents to make decisions in their children's best interests.21, 22 Pediatricians typically defer to
parental choices. However, when parental choices threaten the child's well-being,
parental power may be limited.23, 24
Because infants cannot protect themselves, pediatricians have a special
obligation to advocate on behalf of their patients and to take steps to remove
or minimize harms to them.20, 25
When parents cannot be persuaded to accept interventions to reduce the risk
of HIV transmission to the infant, there is a fundamental conflict regarding
the infant's best interests. The pediatrician cannot act to benefit the infant
without overriding the parents' preferences regarding the care of their infant.
To preserve children's right to an open future, society sometimes intervenes
to prevent parents from risking their children's lives for the sake of values
the children may not agree with when they reach maturity.24, 26, 27, 28
Although pediatricians should be cautious about seeking to override parental
decision making, in some cases it may be necessary to reduce the risk of HIV
transmission and to protect the child's future autonomy interests.29
LEGAL BACKGROUND
The law generally recognizes parents' authority over their children's
medical decisions, including the right to refuse recommended medical treatment,
sometimes even in life-threatening situations.30
Nevertheless, in some instances, courts have legal authority to declare a
child medically neglected, override parental decisions, and order needed medical
treatment to protect the child from serious harm.31, 32, 33
Such cases often are initiated by the child's physician. Parents who agree
to comply with court-ordered treatment may retain physical custody of their
children, although they lose legal authority to make medical decisions.31, 34
Although court decisions in medical neglect cases are sometimes inconsistent
among, and even within, jurisdictions, some general observations can be made.
Courts generally order medical treatment over parental objections when the
treatment is very likely to save the child's life, has few medical risks,
and is short-term.30 A common example is blood
transfusions of children of Jehovah's Witnesses.26
Courts also are likely to order more invasive or long-term treatment, such
as surgery or chemotherapy, when the treatment is necessary to cure a life-threatening
condition and is highly likely to be effective.24, 27, 28
Courts generally are reluctant to order treatment over parents' objections
when the underlying condition is not life-threatening, there is a low probability
of successful treatment, or the treatment itself is dangerous, burdensome,
or long term.35, 36 Courts have
also considered whether the recommended treatment is widely accepted,24, 26, 37 whether the child
is symptomatic,24, 26, 28, 35, 36, 37, 38
and the basis of the parents' objections.26, 27, 35, 37, 39
Although religious objections to medical treatment are given substantial weight,
they are not dispositive.35
The one reported case involving prevention rather than treatment followed
the same approach.39 Postnatal zidovudine prophylaxis
and forgoing breastfeeding significantly reduce the risk of transmitting an
infection that will ultimately prove fatal, are considered safe, and are widely
accepted. Accordingly, cases of parental refusal of prevention measures share
the key features of cases in which courts have ordered treatment over parental
objections. It is therefore likely that, in the absence of a compelling justification
for not following prevention measures, courts will order HIV-infected mothers
to administer prophylaxis to their infants and to bottle-feed, as the Tyson
court did.
RESPONDING TO PARENTAL REFUSAL OF HIV PREVENTION MEASURES
When parents cannot be persuaded to follow recommended measures to reduce
the risk of neonatal HIV transmission, the pediatrician needs to consider
whether to go to court to override that refusal. We next analyze the relevant
considerations and suggest how to balance them.
CLARIFY THE MEDICAL BENEFITS AND HARMS
Clinical decision making involves a balancing of potential benefits
against risks. It is impossible to remove all risk of HIV transmission, even
when all prevention measures are taken. Accordingly, the pediatrician needs
to determine whether the potential benefit from prevention measures after
the child is born justifies seeking court authority to override the parental
decision. The courts have not quantified what level of risk justifies overriding
parental decision making. Pediatricians therefore must rely on their own judgment.
Because parents are granted considerable discretion to make decisions for
their children, a pediatrician should apply a stricter standard for asking
the courts to override parental refusal of preventive measures than for recommending
such measures to the parents in the first place.
In making the risk-benefit assessment, the pediatrician must consider
the magnitude and probability of the potential benefit and harm, including
the risk of transmission and the effectiveness, invasiveness, and side effects
of prophylaxis. Transmission of HIV from mother to infant can occur in utero,
during labor and delivery, and through breastfeeding.40
When antiretroviral therapies are administered prophylactically to the woman
during pregnancy, labor, and delivery and administered to the infant in the
postpartum period and further exposure is avoided by bottle-feeding, the risk
of MTCT of HIV may be reduced from approximately 25% to between 2% and 8%.8, 9, 10, 11, 12, 13, 14
Even without prenatal antiretroviral therapy of the mother, data from
a retrospective, observational study14 suggest
that early postnatal zidovudine prophylaxis for the infant may reduce the
risk of MTCT. Observed transmission rates for infants who received zidovudine
within 48 hours after birth were approximately 9% compared with approximately
27% for infants receiving no antiretroviral prophylaxis.14
Some infants may already have been infected before birth, and, therefore,
administration of prophylaxis and bottle-feeding will not benefit these infants.
However, the presence of maternal antibodies makes it difficult to identify
these infants at birth in routine clinical practice.
Zidovudine, the antiretroviral drug proven effective in reducing MTCT
of HIV, generally is considered safe for the infant. Recent studies41, 42, 43 have found no serious
short-term adverse effects in children who received zidovudine prophylaxis
in utero and postnatally.
Data from outside the United States indicate that bottle-feeding instead
of breastfeeding can also reduce MTCT of HIV even if antiretroviral therapy
is not administered. A meta-analysis and several cohort studies44, 45, 46, 47
have estimated the risk of HIV transmission attributable to breastfeeding
to be between 7% and 14%. A randomized clinical trial15
in Kenya showed that bottle-feeding instead of breastfeeding reduces the risk
of transmission from 37% to at least 21%. Given the many benefits of breastfeeding,48 it is counterintuitive that breastfeeding could be
harmful. However, for HIV-infected women, the risk of MTCT of HIV makes bottle-feeding
a safer alternative where clean water is available.49, 50
The pediatrician must also consider how the mother's clinical situation
affects the risk of transmission. For example, high maternal viral load and
low maternal CD4 cell count correlate with increased vertical transmission.8, 40, 51, 52 There
would thus be stronger grounds for seeking court authority to override the
mother's refusal of zidovudine and bottle-feeding if she has a high viral
titer. Because the data concerning postpartum prophylaxis and the risk attributable
to breastfeeding, particularly in the United States, are limited, some pediatricians
may question the effectiveness of these interventions. Nevertheless, many
pediatricians would reasonably conclude that, in general, the medical benefits
of zidovudine prophylaxis and forgoing breastfeeding outweigh the medical
risks.
CLARIFY THE SOCIAL BENEFITS AND HARMS
Overriding parental medical decision making may carry substantial psychosocial
costs. Court proceedings for medical neglect may jeopardize the parent-child
relationship in several ways. If the infant is removed from the parents' care,28, 53 the foster care system may fail to
meet the basic medical, psychological, and emotional needs of the child entrusted
to it.54 In addition, the threat of losing
custody of their infant may cause parents to compromise deeply held personal
beliefs and values to comply with recommended medical care.
Attempts to override parents' medical decisions also may harm the pediatrician-parent
relationship and compromise future medical care. Parents may come to mistrust
both the pediatrician who initiated neglect proceedings and physicians in
general. Parents also may be less forthcoming in future dealings with the
medical system or may avoid it altogether, thereby compromising the child's
health. Furthermore, pediatricians commonly find that if they work with parents
over time, they can persuade parents to accept interventions the parents initially
rejected, whereas an adversarial stance may irreparably damage the relationship.
Other social harms may result from the family's cultural and social
context. In some cultures, breastfeeding is the norm and may play an important
symbolic role in conveying social status to mothers.55, 56
For instance, the Koran dictates that Muslim women breastfeed their husbands'
children for 2 years.56 In such cultures, a
woman may feel pressure to breastfeed and risk rejection or abandonment by
her spouse or family if she does not.15, 57
Similarly, compliance with prevention measures could lead to unintended disclosure
of the mother's HIV status to her partner or other family members. Such disclosure
could subject the mother and infant to violence or loss of housing and support.15, 58, 59
Giving up breastfeeding also may weaken the mother-infant relationship.
Breastfeeding provides medical, psychological, and economic benefits for both
the mother and infant.48 In addition, breastfeeding
helps mother-infant bonding and attachment.60, 61
Although many American women do not breastfeed,62
some women are strongly committed to breastfeeding.
Finally, monitoring the parents' compliance with preventive measures
may be intrusive and disruptive. Breastfeeding is fundamentally different
from most other medical interventions. Feeding takes place multiple times
per day in the privacy of the parents' home. It would therefore be easy and
convenient for parents to promise not to breastfeed and then do what they
want. Effective monitoring would require constant surveillance of the family
in its home. Accordingly, less effective forms of monitoring must be adopted.
For example, the state of Oregon monitors the Tysons' compliance with the
custody order through weekly visits.
UNDERSTAND THE PARENTS' REASONS FOR REFUSAL
Pediatricians should probe whether parents' refusal of prevention measures
is an informed decision. First, the mother may have misunderstandings that
can be corrected. For example, an HIV-infected woman who intends to breastfeed
may be following the advice of a clinician who is unaware of her HIV status.
Parents concerned about short-term adverse effects may be reassured by evidence
of safety.
Second, a discussion of the parents' reasons for refusing prevention
measures may identify social and cultural factors to be addressed. In some
cases, the mother may face serious harms, such as domestic violence, rejection,
or abandonment, if she does not breastfeed. The pediatrician may support the
mother's decision after understanding these social risks. However, the fact
that a parent's decision has a strong cultural basis does not require the
pediatrician to accept it. In other situations, pediatricians are urged to
oppose cultural practices that cause harm and suffering to children, such
as female genital mutilation or traditional remedies that burn an infant's
skin.63, 64
Finally, discussions may reveal that the parent is incapable of making
an informed decision because of incapacitating psychiatric illness, on-going
effects of substance abuse, or a false belief. A false belief is one that
is demonstrably false and is material to the treatment decision.65, 66
For example, a patient's denial of a true cancer diagnosis may prevent her
from making an informed treatment decision. Unconventional beliefs, including
religious beliefs, are not necessarily false beliefs. Respect for a parent's
decisions does not extend to decisions that are the product of illness or
mental incapacity or where the decision cannot be informed. When the parent
is not capable of making an informed decision, the pediatrician has a clear
ethical obligation to protect the infant.25, 65
The Tysons refused to follow medical advice because they do not believe
that HIV causes AIDS or is otherwise harmful. In response to South African
President Thabo Mbeki's similar denial of the causal link between HIV and
AIDS, hundreds of distinguished AIDS researchers recently produced the Durban
Declaration, which documents the overwhelming scientific evidence contradicting
this position.67 Because the Tysons cannot
be dissuaded from this false belief, it is appropriate to ask the courts to
override their decision to benefit their infant. However, they also objected
to prophylaxis because of concerns about the toxicity of zidovudine. Although
zidovudine prophylaxis to infants generally is considered safe, there can
be short-term adverse effects, and the long-term effects are not known.42 Hence, the refusal of zidovudine prophylaxis was
not based on a false belief. In these unique circumstances, it might have
been appropriate to override only the decision based on a false belief, that
is, to require bottle-feeding but not require zidovudine prophylaxis.
Some parents may initially be unable or unwilling to articulate the
reasons for their decision. In such cases, it is incumbent on the pediatrician
to work with the parents to attempt to understand the decision. If necessary,
and with the parents' permission, the pediatrician should involve other members
of the medical team, family members, or friends to facilitate the discussion.
EXPLORE AVAILABLE OPTIONS
The pediatrician should consider whether there are any options to mitigate
the risk to the infant that the parents would accept, even if the maximum
reduction is not achieved. Pediatricians have successfully used this approach
to benefit children in other circumstances. Some options include administration
of a shorter or less intensive drug regimen. The benefits of breastfeeding
might be achieved through use of banked donor breast milk.68, 69
Pasteurization of banked breast milk destroys HIV but preserves most of the
milk's beneficial qualities.68 There have been
no reported cases of HIV infection from banked breast milk where donors are
screened for HIV.68, 69 Alternatively,
intimate contact during bottle-feeding, such as skin-to-skin contact and wearing
the infant in a sling or other carrier, might provide some of the benefits
of breastfeeding.60, 61 In cases
of domestic violence, the pediatrician should involve social workers or domestic
violence assistance programs. If the woman can be placed in a safe environment,
she may agree to HIV prevention measures.
THE IMPORTANCE OF DISCUSSIONS WITH PARENTS
A plan developed jointly by the parents and pediatrician is preferable
ethically to a course imposed on the family. In discussions, the parents may
change their minds, a fresh approach may be identified, or a compromise may
be forged. The discussions necessary to resolve the dispute take time. However,
delay in intervention may allow for additional exposure and, therefore, additional
risk to the infant. Accordingly, discussions should begin whenever possible
before delivery. The time for discussions may be extended if the mother agrees
not to breastfeed for a short period but pumps to establish her milk supply.
The pediatrician should consider carefully whom to involve in the discussions.
Because of potential social harms, the pediatrician should speak with the
mother alone until it is established that including the father in the discussions
will not place the mother or infant at risk. However, if the mother agrees,
involving a trusted family member, friend, other medical professional, religious
adviser, or hospital ethics committee may facilitate discussions.
This task is a heavy one for busy pediatricians, particularly when faced
with a possibly irrational parent. Nevertheless, this is a task pediatricians
have traditionally assumed with other complicated medical and psychosocial
issues.
WHEN THE DISPUTE REMAINS UNRESOLVED
When the dispute remains unresolved despite best efforts to negotiate
a resolution with the parents, pediatricians must determine whether to request
a court order to treat the infant over the parents' objections. This determination
requires the pediatrician to balance the 4 factors we have identified. Although
the outcome will depend on the specific facts of each case, the following
hypothetical scenarios illustrate situations in which a pediatrician (1) should,
(2) may, and (3) should not seek a court order. Table 1 summarizes our recommendations. Regardless of the decision,
the pediatrician should attempt to continue to work with the parents.
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Case Recommendations: When to Seek a Court Order
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ETHICALLY MANDATORY TO SEEK A COURT ORDER
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