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Daniel Kelly
English 2010
Gary Howard
Portfolio 3
Larger Essay
Parents or Physicians, Who Should Decide?
The birth of a newborn is generally a joyous experience. A new life has just been
brought into the world. What will this new life be able to offer to society? Could it be the next
president of the United States? Could it one day become a professional athlete? Could it win
the Nobel peace prize? These could very likely be questions running through the heads of
parents of a newborn. However, in many instances where babies are born very prematurely, as
early as 24 weeks, the biggest concern is “will the baby be able to survive?” If it will, what kind
of life will it have? Will it be a normal one, or will it be one comatose, unaware of its
surroundings and unable to react symbolically in any way shape or form? These questions
often determine the decision made by those involved, the caregiver and the parents. The issue
is “who should determine whether medical treatment should be given to infants born at 24
weeks gestation or earlier?” The first point of view would be that the parents make this
decision regardless of the opinion of anyone else because it is their child, thus giving them full
responsibility over termination or salvation. The second point of view would be that the
physicians are educated and are morally and ethically able to make informed decisions that the
parents are not, thus giving them the ultimate say in the decision to maintain life or terminate
it. The third standpoint is that neither are given the ability to decline medical treatment for the
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infant, but must do all they can to sustain its life (due to the Child Abuse Amendment which will
later be defined).
“Contemporary ethical and legal norms hold that all human beings born alive should be
treated equally, regardless of disability. Yet there is a strong sense that some lives are
so diminished in capacity for interaction or experience that little good is achieved by
providing medical treatments necessary to keep them alive. In addition, many persons
believe that the parents who have the chief responsibility to provide care, should have a
dominant say in whether their children are treated.”(Robertson 32)
The parents are the ones who, in reality, will have to deal with the effects of the decision to
stabilize the baby or not. They are the ones who will be responsible for the child throughout
the rest of its life. They are the ones who will be emotionally taxed, physically tolled, and
financially charged by the keeping of the baby. Should they not have the right to deny
treatment of their own child? The ethical issue brought to pass with this mode of thinking is
“what if the parents make an irrational decision?” Examples would be deciding to terminate
the infant’s life simply because they don’t want a retarded child; being unable to financially
afford the treatments that would be required to sustain Its life; basing their decision on
incorrect information of probable outcomes. All these and many more could be factors in their
decision. Should somebody else have a say in these situations? Shouldn’t the physicians have a
right to overrule the parent’s decision in cases such as this, where the decision made goes
against what most consider ethical?
A survey was given to 172 residents in pediatrics in Quebec, Canada and also to 136
nurses of the McGill University Health Centre (MUHC, Montreal). The survey’s purpose was
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“[t]o compare caregivers’ attitudes towards the resuscitation of a premature infant if they are
only told the infant’s gestational age [compared to] if they are only given prognostic
information for infants at that gestational age.” The survey’s results were shocking. Only “21%
would always or generally resuscitate a depressed preterm infant at 24 weeks” whereas “51%
of caregivers would always or generally resuscitate the infant in the scenario that only
presented prognostic statistics” (Janvier). Interestingly enough, infants born during this
gestational age have a much higher probability of survival than the prognostic statistics given in
the survey (prognostic statistic given: 50% survival rate, Actual statistic: 72% survival rate).
These results are significant because they suggest that the respondents either have irrational
negative attitudes towards low gestational ages or are rational, but lack understanding of actual
outcomes. Either way this evidence makes a strong case that the physicians involved may not
be able to make a rational and informed decision, contributing to the elimination of the
argument that physicians should be able to make the decision over parents due to education.
Not only this but the physicians could be virtually unaware of the emotional, spiritual, and
financial situations of the family which could all contribute to the type of life the child might
eventually have.
In 1984 the Supreme Court created the “Child Abuse Amendment” (a.k.a. CAA) which
outlined (to a certain extent) the responsibility of the physicians to provide medical care to
infants and disabled children. It states that they must provide all care necessary in order to
sustain the infant’s life with very little exception. Those exceptions being 1- “The infant is
chronically and irreversibly comatose.”; 2- “Treatment would merely prolong dying, not be
effective in ameliorating or correcting all of the disabled infant's life-threatening conditions, or
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otherwise be futile in terms of the survival of the infant.”; and 3- “Treatment would be virtually
futile in terms of the survival of the infant and the treatment itself under such circumstances
would be inhumane.” (PSM 716-8) If the physician, however, feels that the child has a viable
chance at life he must proceed to perform medical procedures on the child regardless of the
parents’ wishes in order to avoid a visit from CPS for medical neglect. Because of this many
hospitals insisted on treating all premature infants despite parental wishes. (Robertson 32-39)
A problem with this situation occurred in January 1998.
“[A] Houston jury awarded $43 million in damages to parents whose daughter, born at
twenty-three weeks and weighing 614 grams, was resuscitated and initially treated
without their consent, leading to a life with severe mental and physical impairments.
Texas appellate courts eventually reversed that decision, but in the five-year interim,
hospitals and physicians faced the prospect of huge damage awards if they sought to
treat cases of extreme prematurity in accordance with CAA standards against the
parents’ wishes.”(Robertson 34)
This amendment takes away the parents’ ability to decide what to do with their child. They are
negated the opportunity to terminate the infants life. The physicians also are declined this
ability. Therefore the Child Abuse Amendment offers the opinion that neither party should
have the right to take away a life, regardless of its future quality.
In my opinion, not only based on the survey described, but also on my moral
values and religious beliefs, parents are the ones with the most pressure and responsibility
riding on them in situations like this. They truly are the ones that will have to face the
consequences of the decision. Once the physician has done his job of stabilizing the baby, he is
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done. He is not (as discussed) physically, emotionally, or financially maimed by the decision to
keep the baby alive or not. As educated as the physician might be, he/she still can never be
100% sure whether the baby will survive or die as a result of the medical procedures that must
be performed to stabilize the infant. Keeping this in mind, I feel that the parents should have
the final say in whether the baby is treated or not, understanding that not all parents’ moral
compasses point north. The same responsibility falls upon those that have a family member
who is unable to respond and is in a deteriorating state. This is where the term “pull the plug”
comes from. If these family members are able to determine whether or not a relative should
live, why would parents not be able to determine this for their child?
Understanding that the CAA diminishes the parent’s role in the decision making for their
child, my call to action would be to revisit this amendment and revamp it to include another
exception. This exception would allow physicians the right to not treat the infant in accordance
to the will of the parents. The scenario of extreme premature infants (24 weeks and younger)
is not specifically mentioned in the CAA. Specific rules and regulations need be invented
concerning this issue offering a greater outline to all parties involved in these situations. By
including this as an amendment to the original Child Abuse Amendment, physicians would
understand that they are to do with the child exactly as the parents wish.
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Work Cited
Honein, Margaret A., R. S. Kirby, R. E. Meyer, J. Xing, N. I. Skerrette, N. Yuskiv, L. Marengo, J. R.
Petrini, M. J. Davidoff, C. T. Mai, C. M. Drushel, S. Viner-Brown, and L. E. S. "The
Association Between Major Birth Defects and Preterm Birth." Marternity Child Health
Journal 13 (2008): 164-75. Print.
Janvier, A., J. Lantos, M. Deschenes, E. Couture, S. Nadeau, and K J Barrington. "Caregivers
Attitudes for Very Premature Infants: What If They Knew?" Acta Paediatrica (2007).
Print.
Robertson, John A. “Extreme Prematurity and Parental Rights after Baby Doe.” Hasting Center
Report July-August (2004): 32-39. Print.
Web. <http://www.mfia.state.mi.us/olmweb/ex/PSM/716-8.pdf>.