Maternal-Fetal Decision Making: Ethical Issues
in Pregnancy, by Dr. Christy L. Cummings.
Hello, my name is Dr. Christy Cummings, and
I'm a Neonatologist and Ethicist with Boston
Children's Hospital.
And today I'll be speaking about maternal-fetal
conflict.
I have no conflicts of interest or disclosures.
And the material presented today will be as
evidence-based and bias-free as possible,
and appropriately referenced.
Today, the learning objectives will be as
follows.
We'll aim to distinguish between maternal-fetal
conflict and maternal-fetal relationship within
the context of the fetus as a patient, with
the shared goal of optimizing health for both
a pregnant woman and the fetus.
We'll demonstrate the application of various
ethical frameworks to approach maternal-fetal
conflicts, while recognizing the limitations
and strengths of each.
We'll recognize the limitations of the best
interest analysis as applied to the fetus,
including gender and racial bias.
And we'll also describe the importance of
autonomy, and respect for persons, and the
right to informed refusal of treatment, specifically
with respect to the pregnant woman in the
setting of maternal-fetal conflict.
Finally, we'll identify appropriate strategies
to resolve conflicts while preserving the
therapeutic physician-patient relationship
in the setting of maternal-fetal conflict.
Case Study.
We'll start off with a case.
This is Katie, a 22-year-old G1P0 woman.
She has a history of intimate partner violence,
substance use, depression, and intermittent
homelessness.
She's late to prenatal care with her first
obstetric visit being late in her second trimester.
She admits to using heroin and percocet regularly,
as well as three to five alcoholic drinks
per day, and half a pack of cigarettes per
day.
Her urine test is positive for heroin, opiates,
and marijuana.
An ultrasound is concerning for restricted
fetal growth.
Katie is counseled about harmful effects of
these toxins on herself, as well as the fetus
and the newborn.
She's offered treatment, including counseling
and medication, or Suboxone, which she declines.
She cannot commit to staying clean, but agrees
to return for follow up visits.
Subsequently though, she misses two scheduled
appointments and shows up eight weeks later.
At that time, a urine test is again positive
for heroin and opiates.
The repeat ultrasound at 35 weeks shows severe
persistent intrauterine growth restriction,
with a concerning fetal tracing, prompting
her medical team to recommend induction of
labor, which Katie declines.
The fetal heart tracing worsens, however,
prompting the team to now recommend a cesarean
section, which Katie also declines.
The neonatologist on service has been asked
by the OB to speak with Katie.
So questions for today, what is maternal-fetal
conflict?
What are some ethical methods of analysis
to approach such conflict?
And what ethical or moral obligations does
the pregnant woman have to her developing
fetus and future child?
What ethical and moral obligations does the
physician have to the pregnant woman and her
fetus?
What are the best interests of the pregnant
woman and the fetus?
And how are these determined?
And do these interests align or misalign?
Can a pregnant woman refuse recommended treatment,
even if the fetus will likely be harmed?
Should a pregnant woman be punished for refusing
treatment that ultimately harms her fetus
or future child?
And finally, what are some practical approaches
to help resolve such conflicts?
Maternal-Fetal Conflict.
Starting off, pregnancy largely is a joyous
event that represents converging maternal
and fetal interests.
Rarely, however, situations can lead to maternal-fetal
conflict, potential fetal harm, posing unique
ethical challenges and dilemmas.
Maternal-fetal conflict can include a pregnant
woman's refusal of recommended induction of
labor or cesarean section, a pregnant woman's
use of illicit substances or non-prescribed
medications, or other risky behaviors, as
well as a pregnant woman's non-adherence to
prenatal care or recommended treatment for
herself or for her fetus' medical condition,
such as arrhythmia, for example.
Now we'll get into a little bit of definitions
and terminology.
Maternal-fetal conflict is typically used
to describe such ethical challenges and dilemmas
for pregnant women and her fetus.
However, many argue that the term "maternal-fetal
conflict" should be avoided and that the term
"maternal-fetal relationship" should be used
instead to avoid the negative connotations
that "conflict" may evoke.
Others, however, urge the term "maternal-physician
relationship" to be used, saying instead that
the conflict is not with the mother and her
fetus, but instead, the perceived conflict
rests usually with the medical team, and not
the pregnant woman at all.
"Fetal interests" and "fetal patient" are
other terms that raise controversy.
These, in general, should be avoided as they
artificially distinguish the fetus as separate
from the pregnant woman, erroneously provide
disproportionate weight to the fetus when
considering treatment options and alternatives,
and finally, encroach on the pregnant woman's
autonomy.
Ethical Issues.
So now, we'll get into some fundamental ethical
issues which include a woman's right to autonomy,
the rights of the fetus or future child, the
moral obligations of the pregnant women, and
the physician's moral and professional obligations
to pregnant woman as well as the fetus.
So, how to best approach these challenging
issues-- what are some ethical frameworks
and strategies?
We'll list a few here, and you should know
that these are not all-inclusive, but some
of the most well-known and used.
First, principle based ethics-- you've probably
heard of these.
These are the four principles championed by
Beauchamp and Childress in their texts, principles
of biomedical ethics, the first being respect
for autonomy.
Second is beneficence, third is non-maleficence,
and fourth is justice.
These four principles are crucial for any
ethical analysis.
However, they are not alone in and of themselves
sufficient.
Other ethical approaches can be used synergistically
to enhance the analysis.
These can be feminist ethics.
Feminist ethics address the care of groups
that have traditionally experienced oppression,
domination, and bias, such as towards women,
minorities, and children.
Feminist ethics allows for consideration of
a broader notion of autonomy.
This includes relationships and contexts in
which women live, the difficulty they often
have in accessing treatment services, and
their endurance of systematic oppressions
related to ethnicity, socio-economics, and
politics.
Another framework is virtue ethics.
Virtue ethics emphasizes decision-making based
on certain qualities or characteristics said
to be essential to a good person or a good
doctor.
This includes truthfulness, fairness, integrity,
temperance, compassion, and fortitude.
Virtue ethics asks, what would a virtuous
person do, or what a virtuous physician do?
This action appropriately follows from what
is an admittedly circular approach.
Another approach is called ethics of care
or care-based ethics and this focuses on the
elements of decision-making that some feel
have been historically neglected in medicine,
such as compassion, care, love, and empathy.
Narrative ethics.
This framework focuses on understanding the
patient's or family's unique personal story
or narrative to form the basis for ethical
reflection and decision-making.
It attempts to ground the abstract principles
and theories into context and emphasizes individual
and family context and voice.
Now, returning to our fundamental ethical
issues involved in maternal fetal conflict,
the first-- respect for autonomy.
Respect for autonomy forms the basis for informed
consent.
Fully informed, competent adults are accorded
the right to make medical decisions, including
the right to refuse an unwanted therapy, even
if that results in serious harm or death.
Justice Cardozo affirmed in 1914 and the famous
Schloendorff case, a pregnant woman with decisional
capacity cannot be forced to undergo any medical
or surgical therapy, even if this means that
harm to her or her fetus could result.
Justice.
How does the concept of justice apply in this
case?
The principle of justice states that equal
person should be treated equally.
Pregnant women should be treated the same
as men and non-pregnant women.
A woman's right to refuse invasive medical
treatment is not diminished during pregnancy.
The potential impact in the fetus not legally
relevant-- morally, perhaps, but not legally
so.
A mother or any other competent person does
not have an obligation or responsibility to
provide medically for a fetus or for another
person, for that matter, such as a parent
or a child or a sibling.
Now, let's get into best interests.
The best interests of the pregnant women generally
include life and optimal health as is the
same for the infant.
In the face of illness, careful benefit and
burden analysis must take place.
That looks at the quality of life, which maybe
perhaps outweigh quantity of life, depending
on the prognosis, harm of the proposed therapy,
and individual values or judgments.
Now, what about the fetal interests and the
moral status of the fetus?
As mentioned before, many argue that increasingly
common terms such as "fetal interests" and
"fetal patients" should be avoided, as these
artificially distinguish the fetus as separate
from the pregnant women, erroneously give
disproportionate weight to the fetus when
considering treatment options and alternatives,
and finally encroach on the pregnant woman's
autonomy.
That said, generally, the best interests of
the pregnant woman and her fetus align or
optimal health is desired for both.
Rarely, however, situations occur, such as
this case, when maternal fetal conflict arises.
Some may perceive, however, the conflict not
as between the pregnant woman and the fetus,
but between the pregnant women and the medical
team.
A pregnant woman may not view the health of
her fetus is a priority, perhaps in the context
of an unplanned pregnancy or major maternal,
medical, or social complications.
Finally, the moral status of the fetus.
Although the moral status of the fetus is
controversial, it is commonly held that the
pregnant woman's right to autonomy trumps
the fetus' right to beneficence.
After delivery, however, the situation changes,
and the medical team caring for the infant
then has an obligation to provide treatment
for that infant as indicated.
Many would argue that a pregnant woman has
a moral obligation to protect and promote
the health for developing fetus-- beneficence--
who will eventually become her future child.
This obligation may include optimizing maternal
mental and physical health-- for instance,
by insuring adequate nutrition, exercise,
and rest-- and conversely by avoiding potentially
harmful substances such as alcohol or illicit
drugs, which is non-maleficence.
Fulfillment of these obligations assume, however,
desired pregnancy, and on a practical level,
adequate medical access and social support,
which we know is not always the case.
Ideally, such crucial information will be
sensitively elicited during subsequent conversations.
Although the pregnant woman may have moral
obligations to benefit her fetus, there's
no legal obligation to do so.
In this case, delicate questioning reveals
that this pregnancy was a result of sexual
assault.
And though this pregnancy was unintended,
Katie wants to have a healthy baby but feels
stigmatized and lacks family and financial
support.
Further probing also reveals that she lacks
mental health treatment.
The physicians' moral and professional obligations
are to the pregnant woman and to her fetus.
The physicians and the medical team in this
case have ethical and moral obligations to
pregnant woman, including an obligation to
respect her as a person, which is autonomy,
and to provide sound medical advice in therapy--
beneficence-- to avoid harm-- non-maleficence--
and to treat her equally-- justice.
The medical team also has an obligation to
optimize the health of the fetus and future
child, although not to the detriment of the
pregnant women and certainly not without her
consent.
The only way to treat a fetus is through the
willing pregnant woman.
Controversies.
So now we reviewed some fundamental ethical
issues.
What if controversy still persists?
If a pregnant woman reaches a decision that
is clearly opposed to her or her fetus' best
interests with significant consequences, the
medical team should engage in further conversation,
time permitting, to better understand her
rationale, her perspectives, her priorities,
her narrative.
Taking the time to ask the pregnant woman
such questions and listening to her story
in the context of her life, perhaps over the
course of several encounters, if time allows,
may be extremely beneficial.
And this can insist and reaching a mutually
agreed upon decision.
If this woman persists, however, in her decision,
which the medical team feels is contrary to
her or her fetus's best interests, the medical
team should honor that decision, ensure that
she truly is informed of all her options and
the possible consequences, and clearly document
this in the medical record.
The question then arises, is should a pregnant
woman ever be harmed for any potential or
real injury to herself, her fetus, or her
future child?
This should never occur.
Punitive measures, such as threats of criminal
action, loss of custody, mandatory rehabilitation,
or incarceration have all been shown to have
a negative impact.
They can erode trust endanger the physician-patient
relationship, create an adversarial relationship
between the physician and the woman, and potentially
conflict with the therapeutic obligation.
Incarcerating pregnant women where illicit
drugs may be available, but medical and psychiatric
treatments usually are not, endangers not
only the health of pregnant women, but also
their existing and future children.
Punishment deters women from seeking medical
care in the future as well, is ineffective
in reducing the incidence of alcohol or drug
abuse, and removing children from the home
may only subject them to potentially worse
risks in the foster care system.
Research has shown, actually, that continued
support of medical treatment has is effective
and less expensive than restrictive punitive
policies.
Studies have shown that women who have custody
of their children complete treatment at a
higher rate than those who do not.
One study demonstrated to mean net savings
of over $4,000 in medical expenses per mother
infant dyad with support of policies and care.
Referrals to Children's Protective Services
should never be done as punishment, but only
if abuse or neglect is suspected to initiate
the evaluation, protect the child, and provide
services, if needed, in order to preserve
the family or allow for future reunification
if possible.
Legal Cases.
It's important that, as professionals, we
remain humble and have humility towards uncertainty
regarding prognosis.
Some court-ordered interventions, such as
cesarean section were in fact, upon retrospective
examination, unnecessary.
It's important that we have individual sensitivity
and respect for those preferences, values,
and perspectives that are unique to each patient
and their families.
Our ultimate goals are to promote the health
for both the pregnant women and her fetus
and infant, and to foster a healthy physician-patient
relationship.
Now we'll discuss some relevant legal precedents
with respect to maternal-fetal conflict.
It's important to remember that court decisions,
policy, and legislation-- while important--
do not replace ethical analysis.
It is helpful to be knowledgeable of pertinent
legal cases, as these rulings have significant
implications for patient care and decision-making.
The following select court cases have supported
a woman's right to autonomy, informed consent,
and informed declination of treatment.
The first, which we reviewed before, is the
Schloendorff case in 1914 where Mary Schloendorff--
the plaintiff-- gave consent to an exam under
anesthesia by surgeon to determine if a uterine
fibroid was in fact malignant or not, but
did not give consent to have that tumor removed.
The surgeon, however, removed the tumor after
discovering he felt it was malignant.
And she sued.
Justice Cardozo upheld respect for autonomy
when he affirmed the right of an adult with
decisional capacity to accept or refuse any
offered medical treatment.
Every human being of adult years and sound
mind has the right to determine what shall
be done with his or her body.
A surgeon who performs an operation without
his or her patient's consent commits an assault
for which he or she is liable in damages.
Another case, the case of AC.
This case is important.
This is a court hearing obtained by hospital
administration who ordered immediate cesarean
section for Angela Carter, who at 25 weeks
gestation was with a terminal recurrence of
metastatic cancer and had already clearly
refused a cesarean section.
Following the C-section, however, against
her refusal, the infant died only several
hours later.
And Angela herself died two days later.
This decision was later appealed and overturned,
as the court order had violated Carter's right
to informed consent and her constitutional
rights of privacy and bodily integrity.
Another important case is Baby Boy Doe versus
Mother Doe.
In this case in 1994, the Illinois Court of
Appeals declined the request for a court ordered
C-section for a pregnant women at 36-weeks
gestation with placental insufficiency over
the pregnant woman's refusal for the section
due to religious beliefs.
The court cited AC in 1990 and stated that
a woman's right to refuse invasive medical
treatment is not diminished during pregnancy.
And the potential impact on the fetus is not
legally relevant.
Quote, "a mother or any other competent person
does not have an obligation or responsibility
to provide medically for a fetus or for another
person for that matter."
Recently however, several court cases have
challenged established precedents of a pregnant
woman's right to informed refusal of a treatment
and autonomy.
We'll go over a few of these.
Some court-ordered interventions, as we've
discussed such as C-section, were in fact
upon retrospective examination, unnecessary.
One of the first ones in 2004 this was Baby
Doe versus Jane and John Doe in 2004.
A Pennsylvania court sought and gained custody
of a macrosomic fetus to perform a C-section
over the pregnant woman's refusal.
She argued that she'd already successfully
delivered six babies vaginally.
Ultimately, the woman left the hospital against
medical advice and delivered a healthy 11-pound
baby vaginally at another hospital.
The Rowland case of 2004.
In this case, a 28-year-old woman with a history
of psychiatric illness was charged with murder
after she refused to C-section and delivered
twins, one a stillborn, and the other who
tested positive for cocaine.
She ultimately pled guilty to the two charges
against her of child endangerment.
And then finally in 2013, Beltran versus Wisconsin.
In this case the woman, Alicia Beltran, was
a 28-year-old pregnant women in Wisconsin.
And she was arrested and taken to jail against
her will for admitting to prior substance
use in the past while at a routine prenatal
visit, and then refusing to take an anti-addiction
medication-- suboxone-- saying that she was
no longer using or addicted to substances.
Several advocacy groups sought petition to
challenge the '97 Wisconsin law that deprives
pregnant women of their constitutional rights
and permits state action that is dangerous
to maternal, fetal, and child health.
So now we've reviewed several frameworks when
approaching maternal-fetal conflict.
We've also reviewed several pertinent court
cases.
Other practical approaches are to preserve
that therapeutic relationship, maintain trust,
provide optimal care, allow adequate time
for conversation, and aid in the realignment
of mutual goals and interests.
It's really important to recognize physician
medical limitations and be humble in our uncertainties
and those predictions which may not always
be true.
It's important to offer the opportunity for
second opinion and to seek ethics consultations
with difficult challenging cases involving
maternal-fetal conflict.
Summary.
Returning to our case, now.
Careful, thoughtful conversations with Katie
reveal that this pregnancy was the result
of sexual assault, as we discussed previously.
And although this pregnancy was unintended,
Katie wants to have a healthy baby, but feels
stigmatized and lacks family and financial
support.
Katie wanted to begin a detoxification program
once she learned that she was pregnant, but
had no insurance or healthcare, and couldn't
find a program, locally, to accept her.
There was also a history of scattered health
care in her past due to unemployment and a
lack of insurance, causing Katie's frustration
and a lack of trust in the medical system.
You learn after several conversations that
she feels judged by the medical team.
Katie fears being punished, as well, or even
imprisoned for continuing to use illicit substances
during her pregnancy.
And you also learned that Katie declines the
induction, and later the cesarean section,
that was recommended by her team because she
fears unnatural intrusion on her body after
being sexually assaulted many times.
And doesn't actually think that these measures
would help her baby, who up until now, has
been growing and developing just fine in her
view.
Once these issues with Katie are adequately
addressed, and she regains trust with the
medical team, she might reconsider her decision.
In conclusion, the American College of Gynecology
recommends that physicians and policy makers
promote the health of women and their fetuses
through advocacy of healthy behavior and support
for pregnant women, through appropriate referral
for a substance abuse treatment and mental
health services, and through the development
of safe, available, and efficacious services
for women and their families.
A pregnant woman's right to autonomy ought
to be respected and held absolute, including
the right to refuse recommended treatment.
Even if this means a risk of harm to herself
or to her fetus.
Efforts should be made to enhance communication
through a positive physician-patient relationship
to help achieve mutual understanding and realignment
of goals, if possible.
Punitive measures should be avoided, as these
have been shown to be detrimental to the physician-patient
relationship, the care of the pregnant woman,
and ultimately her future child as well.
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