ETHICS
Ethical Considerations Regarding Pregnancy
in Chronic Kidney Disease
Sara N. Davison
Pregnancy in the context of chronic kidney disease (CKD) is a daunting clinical scenario for both
health-care providers and patients and raises ethical and social questions that have important
implications for health policy and funding. Despite potential problems, women with CKD will continue
to conceive and deliver babies, and nephrologists will be faced with the challenge of caring for them.
This paper discusses ethical issues regarding pregnancy in CKD and highlights the controversies
surrounding parental, fetal, and societal rights.
© 2007 by the National Kidney Foundation, Inc.
Index Words: Chronic kidney disease; kidney transplant; pregnancy; ethics; assisted reproductive
technologies
P
regnancy in a woman with chronic kidney
disease (CKD) has long been recognized
as dangerous. Historically, women with CKD
were discouraged from becoming pregnant,
and termination of pregnancy was often recommended. However, with the improvements in treatment for CKD, including the
increased amount of dialysis delivered to
most patients and the use of synthetic erythropoietin, not only are more women with
CKD becoming pregnant but also successful
pregnancy outcomes may be increasing, with
the majority of these patients delivering a
surviving infant. Add to this development the
increasing numbers of women who receive a
successful kidney transplant, and the rates of
conception are likely to continue to increase,
posing new medical and ethical challenges to
the health-care teams that care for these patients. This paper discusses ethical issues regarding pregnancy in CKD and highlights the
controversies surrounding parental, fetal, and
societal rights.
Informed Consent and Counseling
Patients are entitled to make informed decisions about their medical care and, therefore,
From the Division of Nephrology and Immunology, University of Alberta, Edmonton, Alberta, Canada.
Address correspondence to Sara N. Davison, MD, Division
of Nephrology and Immunology, University of Alberta, 11-107
Clinical Sciences Building Edmonton, Alberta, T6G 2G3 Canada. E-mail: sara.davison@ualberta.ca
© 2007 by the National Kidney Foundation, Inc.
1548-5595/07/1402-0013$32.00/0
doi:10.1053/j.ackd.2007.01.010
206
have the right to be given all available information relevant to such decisions.1 The physician’s obligation to provide such information in the consent process is grounded in the
ethical principles of patient autonomy and
respect for persons and is affirmed by North
American law and professional policy.1 Because conceiving a child does not always involve a deliberate, active choice on the part of
the woman, physicians are obliged to engage
women with CKD of childbearing age and
their partners in this process, regardless of
whether or not they actively request information about pregnancy. Patients should be informed of fertility rates: these rates have been
reported as 0.3 per 100 patient-years in
women of childbearing age in a Belgium
study2 or a similar rate of 2.2% over 4 years in
a United States registry.3
Providing outcome information is integral
to this process of informed decision making
and consent. Women and their partners need
to be informed of maternal risks, including
dialysis needs, infant survival, alternatives to
biological parenthood, and options for pregnancy termination.4 Doing so not only promotes patient autonomy but also fulfils physicians’ ethical obligations of beneficence and
nonmaleficence by preventing unnecessary
maternal and fetal risk. Maternal risks of pregnancy in woman with CKD include new or
worsening hypertension, diabetes, infection,
preeclampsia, and a decline in graft-kidney or
native-kidney function. Although pregnancy
in patients with a serum creatinine less than
1.4 mg/dL typically leads to a successful obstetrical outcome without affecting the course
Advances in Chronic Kidney Disease, Vol 14, No 2 (April), 2007: pp 206-211
Ethical Considerations Regarding Pregnancy in CKD
of the maternal kidney disease, the outlook is
not as optimistic for patients with moderate or
severe renal impairment. In patients with a
serum creatinine greater than 2.0 mg/dL at
the time of conception, one-third progress to
end-stage renal disease (ESRD) over the postpartum year of follow-up.3,5
If a pregnant dialysis patient chooses to
continue her pregnancy, she will need to commit to an intensive dialysis regimen of 20
hours per week or more.6 Potentially fetotoxic
agents (eg, angiotensin-converting enzyme inhibitors) must be stopped before conception.
The question of which drugs to use during
pregnancy is difficult, especially for kidneytransplant recipients, given limited outcomes
data. Although the frequency of birth defects
in infants born to women who receive immunosuppressive agents does not appear statistically different from that in the general population, evidence suggests increased fetal risk
in animal models and, therefore, present
cause for concern.7,8 In addition to decisions
on which immunosuppressants to continue
during pregnancy, dosing adjustments must
be considered because of changing total-body
volumes and changes in hepatic metabolism
throughout pregnancy.
Although fetal outcomes are more optimistic with the recent improvements in prenatal
and neonatal care, women with CKD and
their partners must be aware of several potential risks to the child-to-be. Significant intrauterine growth restriction that results in
small-for-gestational age (SGA) infants and
preterm labor commonly occurs. Premature
and SGA infants have higher mortality than
do term and appropriately sized infants of the
same gestational age. Children born to
mothers with CKD are also more likely to
have neurodevelopmental impairment and
considerable long-term health and educational needs.
Long-term or late-onset medical complications of immunosuppressive therapy to the
children born to women who take immunosuppressive agents are as yet unknown. Potential parents must be made aware that the
child may need additional resources, including psychosocial and caretaker support. As
the majority of pregnancies associated with
CKD result in live-born infants, the long-term
207
cognitive, developmental, and functional outcome of these infants is of increasing importance to prospective parents, as well as to the
medical community that must provide the
appropriate support services.
Unfortunately, nephrologists rarely discuss
fertility and contraception with their premenopausal patients.9 Because half of all
pregnancies in CKD are unintended, occurring even in patients already established on
dialysis, physicians should not wait to raise
the issue until patients express concern or
interest. Rather, nephrologists should address
fertility and contraception with all women
with CKD of child-bearing age. These issues
are of particular importance before transplantation because of the likelihood of improved
fertility after transplantation. Some transplant
programs include contraceptive counseling in
their patient-education programs, and the
American Society of Transplant Physicians
recommends this counseling as part of the
transplant evaluation. For those patients not
interested in pregnancy, contraception must
be explored. Professionals from multiple disciplines, such as fertility clinics, obstetrics, social work, perinatology, and nephrology,
should be utilized for counseling. Genetic
counseling may be required to discuss the risk
of offspring acquiring parental primary-organ
disease.
Shortened Life Expectancy
Historically, some physicians have counseled
women not to become pregnant when they
have a life expectancy that is shortened or
have a chronic illness that impinges on their
ability to rear children because of concern for
the welfare of the potential child.10,11 The
same concern could be extended to men with
CKD wishing to father a child. These parents
may not live to rear their children or might
not be able to cope with a child when dealing
with the physical and psychosocial difficulties
of living with CKD. How should patient autonomy be balanced against their limited life
expectancy or ability to care for a child? Some
argue that a child is not ethically wronged by
being born to a parent with a chronic illness
such as CKD, because no parent is guaranteed
to remain healthy or live to rear a child until
208
Sara N. Davison
adulthood.4 In fact, couples are increasingly
having children much later in life, and elderly
parents, who would be expected to have a
relatively shortened life expectancy, are not
uncommon. Nevertheless, the greater likelihood of decreased parental life expectancy is
morally relevant, and I believe that physicians
have an obligation to encourage patients to
consider their reproductive decisions both
from their own perspective and from that of
the child-to-be. Patients should contemplate
who will help rear a child with health or
developmental problems and whether someone else is willing to take over primary caregiving responsibilities in the case of disability
or death.4 Ideally, these issues should be examined by all prospective parents, even those
who are healthy.
Another caution against counseling patients with limited life expectancy not to conceive on the basis of “interests of the potential
child” is that such counseling appears to claim
that nonexistence is better than having one’s
parent die or being ill when one is still quite
young.10 No one can say when nonexistence
would be better; the intrinsic worth of an
individual’s life cannot readily be quantified,
least of all when that life has not yet started.
The argument has been made that the level of
parenting would have to be extremely low for
nonexistence to be preferable to being a child
of those parents. Society’s reluctance to step in
and take a child into care except under the
most dire circumstances of appalling parenting confirms this belief.10
Fetus As a Patient
In caring for pregnant women, physicians
may view the fetus as a second patient. Ethical
issues can arise if the physician feels the patient’s decisions place the fetus at increased
risk. This circumstance places maternal autonomy in direct conflict with fetal nonmaleficence and social justice, in view of the resources that may be required to manage fetal
complications. However, competent adult
women have the right to accept or refuse any
and all medical treatment, even when pregnant. Health-care professionals have to respect a woman’s decision, even if it places the
fetus at increased risk. Although a woman has
a moral obligation to consider the interests of
her fetus in her decision making, patient autonomy trumps most considerations in Western countries, and North American law has
upheld women’s right to life, liberty, and security of the person and has not recognized
fetal rights. A woman is not required to act in
a fetus’s best interest, and she cannot be compelled to do so by her physician or the
courts.12
Rights
The principle of reproductive freedom is the
widely accepted right of people to make their
own reproductive choices. Some people believe that this principle means individuals
have a “positive” right to reproduce, thus
imposing duties on others to provide them
with the means (including financial) to do so.
The argument has been made this is belief is
justified by the deep value attached to parenthood by human beings and its crucial role in
their well-being.13 Others, however, believe
that reproductive freedom is a “negative”
right. People should be free to reproduce if
they choose so or can do so naturally, but they
are not necessarily entitled to financial assistance and do not have the right to excessively
burden the health-care system with their
choices.14 The following discussion around
the ethical issues of resource allocation as they
pertain to dialysis, organ allocation, and assisted reproductive technologies (ARTs) in the
context of pregnancy in CKD will depend in
large part on whether society views pregnancy as a positive or negative right and
whether it views this right to be strong
enough to compete with conflicting societal
considerations.
Resource Allocation
Rising public and professional expectations,
an expanding pool of treatable patients, and
costly new technology must be balanced
against health-care budgets.15 In a world
where resources are limited, questions about
the right to parenthood can be formulated as
questions about priority in allocation. Despite
fetal and maternal risks, including accelerated
progression to ESRD, patients with advanced
Ethical Considerations Regarding Pregnancy in CKD
CKD who wish to conceive may choose to do
so. Do patients have a right to take this risk,
given the tremendous resource implications
resulting from maternal and fetal complications? The decision to conceive is generally
accepted to be a personal decision and supported by the ethical principle of patient autonomy. We currently dialyze patients who
have ESRD caused by other high-risk behaviors, such as drug abuse, smoking, and obesity. Also, a prediction of who will and will
not progress to ESRD with pregnancy is difficult to make.
I believe the major issue is how we should
counsel patients with more advanced CKD
who wish to have children, given that our
responsibility lies not only with them but also
with other patients and a judicious use of
societal resources. Should we advise women
to wait until ESRD and hope for a successful
transplant, or should they proceed with trying
to conceive while they retain residual kidney
function? No professional guidelines exist to
help physicians or patients with this decision
making. As previously outlined, conceiving
with stage 3 to 5 CKD is associated with
significant maternal and fetal risks, which in
turn have significant resource implications,
especially if pregnancy results in the need for
renal-replacement therapy. These risks vary
among women, depending upon the degree of
kidney failure and comorbidity. Pregnancy
also causes sensitization to transplant antigens, making an appropriate donor kidney
more difficult to find in the future. These risks,
however, must be weighed against the increased wait time to kidney transplant and the
fact a successful transplant is not guaranteed.
For some, the opportunity to conceive may be
missed. However, if conception occurs after
transplantation with a well-functioning graft,
maternal and fetal risk would be greatly reduced. The nephrology team will have to raise
these issues with patients so that each individual is able to weigh the risks and benefits and
make a very personal decision for herself.
Pregnancy after transplantation also has
ethical implications with respect to organ
allocation. Physicians must consider the effect that pregnancy may have on the patient’s allograft. Although concern has been
expressed that the increased glomerular fil-
209
tration rate caused by pregnancy might lead
to hyperfiltration and glomerulosclerosis in
kidney-transplant recipients, impairment of
kidney function during pregnancy among
transplant patients appears to parallel the
natural course of kidney dysfunction in all
transplant recipients.16 The expert consensus, therefore, is that pregnancy does not
compromise kidney allograft function when
the allograft is stable before pregnancy. On
the basis of limited data, transplant recipients are advised to wait approximately 1
year after transplantation to conceive to ensure stable graft function before pregnancy.
However, concern is warranted when graft
function is compromised. In this setting,
pregnancy, like that in CKD of native kidneys, is likely to accelerate the loss of kidney
function. What are the ethical issues related
to retransplantation if allograft loss occurs
as a result of pregnancy? Some ethicists
have argued that patients who lose their
grafts because of voluntary risk-taking activities should be given lower priority for
retransplantation. Does this penalty apply
to pregnancy, or is pregnancy in the context
of CKD still considered a “right”? Although
pregnancy is not a voluntary activity for all
women, the claim raises the issue of personal responsibility and its relation to organ
allocation.4 Kidney-graft failure, however, is
usually the result of a number of interacting
factors, many of which are beyond the control of the transplant recipient. To blame the
woman for the organ failure may unfairly
place the blame on one factor, pregnancy,
which only partly explains the organ failure.
Given the importance of biological parenthood, a policy that requires a woman who
risks her graft by becoming pregnant to be
given lower priority for a second organ demands too high a price.4 Thus, transplant
centers typically do not discriminate against
women who lose either native-kidney or
graft-kidney function while pregnant. Patient autonomy in the context or pregnancy
would be seen by the medical community to
trump societal concerns regarding distributive justice, even with respect to a scare
resource such as deceased-donor kidneys.
Whether this view is shared by society is
unknown.
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Sara N. Davison
Assisted Reproductive Technologies
As pregnancy becomes more accepted in
women with CKD, treatment of infertility and
access to funded ARTs by these patients is
likely to rouse increased ethical and public
debate. Childlessness has been associated
with significant personal suffering, and couples who want children will go to great
lengths to have them. Currently, three options
exist: to adopt, to choose other life goals, or to
attempt assisted reproduction. ARTs enable
many women to have children who would
otherwise have remained childless. What type
of treatment should be offered if CKD patients
have infertility problems?
In the past, certain groups of women, such
as single or older women and those whose
ability to rear children was questioned, particularly women with chronic illnesses or disabilities, had been denied access to ART.17
This practice is no longer the case, but the
ethical arguments used to justify selection of
women for ARTs were based on social concerns or scarcity of resources.
The argument to limit the positive right to
parenthood on the basis of social concerns
centers around concern for the welfare of the
potential child. Given the limited survival and
physical and psychosocial difficulties of living
with CKD, parents with CKD may not live to
rear their children or have the ability to adequately care for them. Because no parent guaranteed to remain healthy or survive throughout the offspring’s childhood, this practice
may constitute an inappropriate discrimination that excludes women with potentially
debilitating and life-limiting chronic illnesses
such as CKD from access to funded ARTs.17
Although requiring a contingency plan for a
child’s upbringing is not practical for ART
programs, physicians should be aware of
these issues and discuss childrearing in the
context of the mother’s chronic illness and
possible incapacity or premature death, before
proceeding with ART.
The second argument for limiting access to
funded ART to CKD patients is based on the
idea that society has a right to refuse to pay
for ART if it does not regard infertility as a
priority health concern, either because of cost
or because the burden of taking care of the
potential children would likely fall on society’s
own shoulders. The cost for ART itself is considerable, which would be further added to by
the additional short-term and long-term complications associated with pregnancy in CKD. If
ART resources are limited, couples may need to
justify why they should have assistance to conceive in preference to other couples. Ability to
care for the potential child or the additional
costs associated with either maternal or fetal
complications may be among the factors considered. In cases in which burden for caring for the
child will likely fall on society’s shoulders, the
individual is not only requesting help in procreating but is also requesting significant help from
society in rearing the child. In such cases, society seems to be entitled to a say about how its
money is to be used and about the burdens it
agrees to take upon itself.13
When resources for health care are scarce,
we need to consider the opportunity costs.
Although infertility can cause psychological
distress, a better use of resources may be to
offer counseling to facilitate couples’ acceptance of childlessness and to facilitate their
ability to cope with the expectations of relatives and friends.18 A reasonable action is for
nephrologists to contact local infertility providers to promote mutual understanding
about issues such as specific local criteria for
fertility therapy, infertility providers’ attitudes toward treatment of infertility in patients with chronic diseases, and their expectations for preconception preparation.
Responsibility for Increased Research
and Public Debate
Minimal literature has been published regarding pregnancy and contraceptive outcomes in
CKD, and risks remain difficult to adequately
define. For example, concerns regarding contraception exist over and above those in the general
population that need to be taken into consideration. Oral contraceptive pills are contraindicated in patients with significant cardiovascular
disease, and several relative contraindications
such as systemic lupus erythematosis, hypertriglyceridemia, hypertension, and diabetes
mellitus may also be relevant to CKD patients.
Intrauterine devices may be problematic for
peritoneal dialysis and immunocompromised
Ethical Considerations Regarding Pregnancy in CKD
transplant patients because of risk of infection
and reduced effectiveness.19 The medical profession has an obligation to collect these outcomes data. The national Transplantation
Pregnancy Registry was established in 1991,
but a similar registry has not yet been established for collection of outcomes data specific
to patients with CKD. In addition, many of the
ethical issues of pregnancy in CKD involve
allocation of societal resources and concerns
for potential children. The medical profession
has an obligation to engage the public in open
debate to determine societal priorities and
preferences. Many of these decisions cannot
be ethically solved by opinion leaders or the
medical profession in isolation.
Summary
The coexistence of CKD and pregnancy remains a daunting clinical scenario for both
health-care providers and patients and raises
ethical and social questions that have important implications for health policy and funding. Despite potential problems, women with
CKD will continue to conceive and deliver
babies, and nephrologists will be faced with
the challenge of caring for them. A major issue
is how and when nephrologists should address fertility issues with patients, knowing
that the interest in parenthood must be balanced against the interests of the potential
child and those of society in general. In the
interests of the child, comorbidity that affects
the parents’ life expectancy or ability to care
for the child should be discussed with potential parents before conception. Society may
decide as a matter of policy that it will not
fund ART for certain patients, such as those
with CKD. However, such decisions will require significant public debate and justification.
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