Sibani Das, Hanna Hong, Hyun Oh, Victoria Saykally, Marisa Smith, Jessica Wang

B H 411
Assignment 2
Marias Case Ethics Recommendation
(a) Four box analysis
1. Medical Indications:

2. Patient Preferences:

Maria: Term female infant from

unexpected pregnancy

Autonomy principle & Capacity to

choose: Maria is an infant and does not
have autonomy or the capacity to choose.

Diagnosis: Maria has Down syndrome

(Trisomy 21) and a complex cardiac lesion
which needs to be treated for her to
survive past childhood
Treatment: There is no treatment for
Down syndrome. The cardiac lesion
requires at least two major surgeries
during infancy
Prognosis: A minimum of two major
surgeries for her cardiac lesion could
prolong Marias life beyond childhood.
Goals of therapy: Keep Maria alive past
childhood
Efficacy/Inefficacy: Major surgeries
always have high risks involved, but if
successful, Maria could live. She would
still have Down syndrome
Futility/Utility: Not futile. Cardiac
surgeries increase Marias chance of
surviving past childhood.
There is no cure for Down syndrome.

Informed consent or refusal: Parents are

presumably being informed of the risks,
costs, and benefits.
Surrogate Decision Maker: Marias
parents have the right to make decisions
for her
Parents are unsure if they want Maria to
undergo treatment, which may be taxing
on their entire family as well as financially
difficult.
Advance Directives: N/A

3. Quality of Life:

4. Contextual Features:

Definition: Maria is an infant. She has yet

to establish her beliefs or opinions
regarding her subjective interpretation of
QL.

Family and loved ones: Marias parents

have three other children all in college.
Marias parents are also 44 and 45 years
old, older than most people who have
children.

Overall Characteristic QL:

- Regardless of whether or not the major
heart lesion surgeries are undertaken,
Maria will live with Down syndrome, which
is typically associated with physical growth
delays, characteristics facial features, and
mild to moderate intellectual disability.
- Children with Down syndrome may
experience an improved quality of life with
with proper care and education
Effects on QL due to surgery choice:
- If Maria undergoes surgery and they are
successful, she can presumably live a
happy and healthy life with Down
syndrome. Because Down syndrome is
relatively well understood, assistance and
support can be made available to her. She
will have to be closely monitored for side
effects and health problems common in
Down syndrome for the duration of her life.
- If surgery is not undertaken for her heart
lesions, Maria may not live past childhood
and her quality of life may be limited by
frequent medical care and the
ramifications of her condition. She will
presumably die at a very young age.

Costs: The two major surgeries (and

possibly more) for Marias heart lesion are
costly. Additional costs would include
having to monitor Marias illness for the
duration of her life.
Allocation of resources: Presumably
Marias parents are supporting or partially
supporting their other three children in
college. Marias additional medical costs
may become overwhelming for the familys
financial situation as Maria may depend on
her parents for her entire life. The hospital
is assumed to have means to provide the
treatments required for Marias
procedures.
Confidentiality v. protection of others:
N/A
Law: Would the physicians or the hospital
be held liable by the law for neglecting to
give Maria treatment even if it was in
accordance with the parents wishes?
Conflicts/concerns among providers:
Dr. Bellows is unsure how to proceed.
Patients culture/ Religion affiliation:
N/A

(b) a consensus recommendation about how to proceed with Maria's care

Decisions should be based on Marias best interests so that the burden of her medical
care does not outweigh the possible benefits of her surviving beyond childhood. Even
though Maria has Down syndrome, this factor should not play a role in her parents
decision. Marias parents should pursue the treatments necessary to increase their
childs chances for survival and proceed with the cardiac lesion surgeries.

(c) an argument appealing to ethical principles that supports the consensus

recommendation
When examining Marias case, we look at the method of principlism to justify that
Marias parents should pursue the treatments necessary to increase their childs
chances for survival. According to Jecker, the method of principlism holds that particular
ethical judgments are justified by showing that they follow from one of the following four
ethical principles (Jecker 131). The Principle of Respect for Autonomy follows the
concept of self-ruling in that a persons choice should be respected if they are
competent in making informed and voluntary decisions. The Principle of Beneficience
states that one should promote the best interests for the patient by doing good and
eliminating harm. The Principle of Nonmaleficence states that one should not
intentionally inflict harm to the patient. Lastly, the Principle of Justice states fairness
should be distributed among equals such that equals receive equal treatment.
For Marias case, key issues we need to consider are the Principle of Beneficence and
Nonmaleficence. The Principle of Autonomy cannot be applied here because Maria is
an infant, and so her parents have the authority to make her medical decisions. The
Principle of Justice may also be a factor here in that the parents would have to consider
their ability to provide financial support for all of their children equally. We do not know
enough about this consideration, however, and so we will neglect this reasoning in our
argument.
The Principle of Nonmaleficence requires that one should not intentionally inflict harm to
the patient. Therefore, physicians should provide a proper standard of care that will
reduce the most harm. In a case such as this, Dr. Bellows would create the most harm
to Maria through the act of omission, by choosing to forego treatment. It is understood
that Maria has a complex cardiac lesion that will require at least two major surgical
procedures during early infancy for her to have a chance of survival beyond childhood.
This suggests that by foregoing such treatments, Marias chances of survival beyond
childhood are significantly reduced. Thus, this principle articulates that Dr. Bellows has
a commitment as a healthcare professional to protect Maria from harm and an early
childhood death. This is also in accordance to the Principle of Beneficience, in which Dr.
Bellows should do good and promote the best interests of the patient by recommending
these surgical procedures, which would allow Maria the chance to live beyond
infanthood and experience life.
On the other hand, if Dr. Bellows performs the treatments necessary for Marias heart
lesions, there are risks involved that may also unintentionally harm Maria. Therefore, we
can see two possible and opposite outcomes for the surgeries required to treat Marias
cardiac lesions. For this case, we invoke reasoning by the Principle of Double Effect.
The four principles that must be satisfied by the Principle of Double Effect are that the
bad effect is unintended, good effect is intended, the bad effect is not means to the
good effect, and that the bad cannot outweigh the good.
One negative effect of undergoing the cardiac lesion surgeries is that, if successful,
Maria will have to live with Down syndrome for the rest of her life. There may also be
other unintended negative effects such as infection, suffering, permanent damage of the

heart or brain, and even death. However, its important to note that the single action of
performing cardiac surgery was judged by the intended effect of potentially saving
Marias life. Marias Down syndrome and other side effects from her surgeries are not
the intended results of the proposed treatments.
The good effect of undergoing surgery is that Maria will have a high chance of living
beyond her childhood years. Down syndrome is understood well enough from a medical
standpoint such that Maria could live a long and happy life. Enabling Maria to live is the
intended good effect.
Third, the bad effect is not a means to the good effect. By all means, the negative
ramifications of Marias surgeries are not the means to fixing her heart lesions, and
neither is her Down syndrome going to have a direct effect on the success and
effectiveness of the surgeries. This satisfies the means-end condition meaning that the
good effect is not achieved by way of the bad.
Lastly, the bad effect is proportional to the good effect, meaning that the risks involved
with the surgery do not outweigh the overall good. In Marias case, if she does not
undergo surgery, it is assumed that Marias chance of survival beyond childhood is
significantly reduced. Therefore, this satisfies the proportionality condition of the
principle of double effect because the importance of the good effect is equivalent to that
of the bad effect. The good of increasing Marias chances of living beyond childhood
outweigh the bad of ending her life sooner than it otherwise would end without the
surgeries.
Overall, these four criteria were applied to Marias case, and the principle of double
effect was used to determine that the four conditions were not violated in the
recommended action of pursuing the treatments necessary to increase Marias chances
for survival.
(d) a dissenting viewpoint and your basis for rejecting it
One main dissenting viewpoint against performing Marias surgeries is the argument
that Maria will have to live with Down syndrome, an incurable condition, for the rest of
her life. People living with Down syndrome require repeated medical visits throughout
the rest of their life, as well as close monitoring for the development of additional
medical conditions such as heart disease. It is also well understood that people with
Down syndrome have a higher chance of developing mental health issues, although the
degree to which Down syndrome affects the individual vary from person to person. One
argument would be that it is unethical to allow Maria to live with Down syndrome
because of the nature of the disease and the potentially lower quality of life.
However, we reject this viewpoint because Marias parents should not base her course
of treatment due to the fact that she has Down syndrome. Down syndrome has been
and continues to be intensely studied, such that families are better educated and
assisted to improve the life of someone with Down syndrome. While Down syndrome
can cause adverse effects, Maria has a good chance of living a happy, loving, and long
life. Even if the parents face a significant financial burden, it is important to give their

daughter a chance at life. Our recommendation is that Dr. Bellows should encourage
Marias parents to proceed with the treatments and educate Marias parents on the new
lifestyle associated with raising children with Down syndrome.