Defending Children and Infants in Medical Care Decisions Made by Their Parents

By: Elizabeth Lilly.

Written as part of the First-Year Seminar “The Ethics of Care”


I. Introduction

Most people would agree that parents always want the best for their children and would do anything to keep them alive, well, happy, and healthy; but what happens when that isn’t the case? What happens if a parent wishes to withhold medical treatment, in certain cases life-saving treatment, from their children? In April of 1982, a baby boy, referred to as Baby Doe was born in Bloomington, Indiana. He suffered from Down’s Syndrome and a condition characterized by the connection of the trachea and esophagus which eliminated the baby’s ability to consume food orally.[1]This condition was surgically correctable with a decent prognosis for success, but the parents elected to refrain from surgery and opted against providing nutrition and hydration through tubes for the baby.[2]The hospital petitioned the court to review the parents’ decision but the decision to withhold treatment was upheld and Baby Doe died before the case could be appealed to the US Supreme Court.[3]

This tragic case brings to light a lot of medical ethics issues, especially pertaining to the rights and responsibilities of parents. One of the primary principles of bioethics is autonomy in which individuals make personal medical decisions for themselves,[4]but it is obvious that an infant cannot make independent medical decisions, and that responsibility for all children is given to the parents. However, when parents are given this responsibility it is reasonable to expect that they would make the choice that truly would be in the best interest for the well-being of the child. Another issue to consider is that typically associated with euthanasia: namely, the question of when it is in the best interest of the individual to allow them to end their life—the conditions at which it is acceptable to claim that death is better than treatment and possible life. Again, though, this is typically expected to be a personal and independent decision, not one concerning the life of an infant.

The sides of this specific case of Baby Doe are relatively simple but have complex considerations. The decision can either be made to go through with the surgery and help the baby live or the decision can be made to let the baby die naturally with no medical intervention. When stated in this way it seems relatively simple, but there are many other factors to consider in this case and in other similar cases involving the care of newborns. Such considerations include the presence of disability, the options for treatment and their chances of success, the wishes of the parents, and the prospective quality of life for the newborn. Regardless of individual case or situation, decisions should be made based on the idea that the best-interest of the infant or child is life over death until sufficient information proves otherwise.

This paper will explore the concept of parental authority over children in medical decisions, the factors, implications, and repercussions of that authority, relevant legislation regarding parental authority over children and newborns in particular, and the ethical concerns regarding the prevalence and potential consequences of such authority with their respective proposed solutions.

 

II. Parental Authority Over Children in Medical Decisions
A. The Precedent

Parents have the right, responsibility, and authority to make medical decisions on behalf of their children because the children are not mature enough to make such complex decisions for themselves.[5]Parental authority, however, differs from the concept of autonomy. Autonomy is a highly valued standard of bioethical debate. It is the concept of self-rule and determination when it comes to deciding courses of medical care appropriate for the individual.[6]By definition, there can be no such thing as parental autonomy because that would mean self-rule of another person which is why the term “parental authority” is used to describe the relationship between parents and their children in decisions of medical care.[7]This right is typically granted to parents because in most cases they are the ones who know most and care most about the child, and they can also take into consideration the well-being of the family as a whole[8]even though the primary concern should remain with the individual patient.[9]

In most cases, the parent acts as a proxy with the title of “substitute.” This title is for someone who knows the patient well and makes decisions based on what they already know about the patient’s expressed wishes.[10]In other cases, a surrogate may be involved; this person is an outside third party who makes decisions based on the patient’s best interest likely without necessarily knowing the patient or their explicit wishes very well.[11]This surrogate role would become necessary if the parents could not act as the decision maker for their child. This would be the case if the parents themselves lack the capacity for decision making, if there are irresolvable differences between parents, if parents have clearly resigned responsibility to their child, or if an outside legal guardian has been appointed for the child.[12]Despite the possible presence of a surrogate decision maker, parents are most commonly the ones making decisions for their children.

B. Right to Withdraw or Withhold Treatment

Within this right of parental authority, parents have the right to refuse or end treatment, even life sustaining treatments for their child.[13]Some of the only cases in which a parent may be able to withhold necessary treatment without being accused of harming their child would be in cases which have religious basis. In cases involving religious beliefs, there is a heavy burden of proof placed on the State when attempting to declare a parent’s medical treatment decision to be inappropriate.[14]However, it is also important to consider that while the parent has accepted the faith and intend to bring their child up in that faith, the child has not yet accepted the faith of their parents. Therefore, it is inappropriate and unacceptable in some cases for parents to make martyrs of their children when the child has not yet accepted the faith on which the decision to withhold treatment stands.[15]When there is a positive prognosis of treatment and otherwise expectation of death without treatment, courts are more likely to intervene and overrule a parent’s decision to withhold treatment; usually courts only go against parental decisions when the child’s life is on the line.[16]When parents do not have religious basis for refusal of treatment, they are more commonly accused of neglect. There are many available treatment options so it is expected that they would pick one that they found acceptable to try to improve the health of their child. However, there are still debates over whether or not certain current treatment methods are acceptable to constitute sufficient treatment.[17]

Aside from religious considerations, parents may also consider the potential impacts on the family and on society as a whole and whether those potential impacts should factor into the decision of whether or not to keep the baby alive.[18]In certain cases, the health condition of the baby may be so severe impacting them throughout their entire life. If this condition limits their functioning to the point where they always rely on outside assistance to perform basic daily functions, it may be determined that the condition is not worth coping with for both the patient and the family members and members of society on whom the patient will depend. When factors of the family’s well-being are considered in determining whether or not to end or refuse treatment, the “standard of ‘reasonableness’” should be applied stating that “the best option is one that most rational people of goodwill would choose after full consideration of all factors that influence the situation.”[19]This standard removes the influence of emotion on decision making; it necessitates clear thinking and genuinely positive motives toward promoting the well-being of everyone involved. If this standard is followed, it is much more likely for parents’ decisions to be followed and upheld rather than questioned as insufficient treatment and neglect of their newborn.

The more universal basis for permitting the withholding of treatment from a child is if the treatment method is believed to be unreasonably uncomfortable for the child.[20]This is especially true in the role of health care professionals; health care professionals can only legally and ethically withhold treatment in cases where there is an expectation that the life of the patient “will be filled with intolerable distress and suffering that cannot be prevented or alleviated” or the patient is believed to be experiencing an “irreversible progression to imminent death” where treatment would be “clearly ineffective or harmful.”[21]Overall, regardless of religious or secular basis for medical decisions, the health of the child and prognosis for well-being through the course of treatment or lack thereof is always most important in the consideration of whether or not to withhold or withdraw treatment. However, these decisions could all change slightly if once the child is involved in the decision-making process.

C. Child’s Involvement in the Decision

Collectively, we recognize that children are vulnerable and that they need to be protected, but we don’t typically recognize them as real “members of society.”[22]In an ideal world, there would be some balance between the two perceptions. For this to apply in medical decisions, children should be involved in decisions impacting them to the highest capacity at which they are able.[23]Children who are mature enough should at least have a voice in medical decisions pertaining to them even if parents are still given the final say.[24]This maturity level may be difficult to determine but the recognition of maturity comes with a high level of understanding and decision-making capability in the child.[25]

In cases of infants and young children, determining maturity is much easier because they are simply defined as “not mature” at such a young age. When it comes to infants and young children, they have no significant skills to be able to meaningfully participate in decision making so decisions would be entirely up to a substitute or surrogate.[26]As mentioned earlier, this role is typically taken by a parent. The decision of the parent becomes increasingly more important in these cases because the child can do absolutely nothing to defend themselves and they are completely at the mercy of their decision-maker. This makes the consideration of the best interest of the child even more critical.

D. Concept of “Best Interest”

All decisions made for children, especially serious medical decisions, should be made in the best interest of the child. The best interest of the child is considered by weighing potential benefits such as higher life expectancy with treatment against potential burdens such as increased pain, disability, or low chance of survival with treatment.[27]Both short term-and long-term consequences with and without treatment should be considered in order to determine the course of action with the most positive potential outcome for the life of the child.[28]While these considerations may seem mostly straight-forward, there is no definite concrete ability to determine the future course of a patient’s life with or without treatment, only thoughtful prognoses can be made in hopes of understanding the potential effects of a course of treatment. Because of this and because of the other factors which must be considered in making medical decisions for children, discrepancies may occur in what individuals think is truly best for a child.

E. Conflicts between Parents and Medical Personnel

It is both a legal and ethical obligation of parents and medical personnel to work and make decisions in the best interest of the child. While this statement may be agreed-upon, this concept of best interest, as stated in the section above, is an abstract and not always agreed-upon concept. While the decision of a parent is usually accepted based on the assumption that they think in terms of the best-interest of the child, medical care takers can challenge parent decisions if the decision is believed to be potentially dangerous for the child. Sometimes intervention from a child protective agency or court system may become necessary as we saw in some of the earlier cases in which parents elected to withhold medical treatment for their child.[29]For instance, intervention by the court system was sought in the case of Baby Doe and resulted in the development of protective legislation for children and infants in need of medical care.

 

III. Important Legislation

Following the unfortunate death of Baby Doe, steps were followed to enact rules and regulations so this type of treatment of newborns would be limited and only permissible through specific exceptions.

A. Development of the Baby Doe Rules

On March 3, 1983, the US Department of Health and Human Services issued the first set of “Baby Doe Rules” requiring all hospitals to provide a 24-hour telephone hotline where people could report discrimination anonymously, and requiring all hospitals to post signs detailing Section 504 of the rules which required hospitals to provide treatment to handicapped infants.[30]Any lack of cooperation with these rules would cause the hospitals to risk losing their federal funding.[31]

The rules were first put to the test in the 1983 case of Baby Jane Doe who was born with “an incomplete development of the spinal cord, an abnormally small head, a buildup of fluid in the cranium, and kidney damage.”[32]The parents decided against surgery and instead chose to treat with palliative care. After a lengthy court process, the parents’ decision was upheld which proved to be an impediment for the sustainability of the Baby Doe Rules.[33]Final revisions and regulations were issued to the Baby Doe Rules in 1984 in which local, voluntary Infant Care Review Committees were nominated to be integrated into hospital ethics boards.[34]Through ups and downs of establishing and invalidating elements of the rules and regulations, a revised version of the bill, the Child Abuse Amendments of 1984, which differed little from the original Baby Doe Rules, was approved in October 1984 and went into effect in the beginning of 1985.[35]

B. Child Abuse Amendments of 1984

The Child Abuse Amendments of 1984, hereafter referred to as the CCA, promoted doctors and hospitals to pay more attention to the issues of discrimination against handicapped newborns.[36]This bill made “withholding life-saving treatment and nutrition from any impaired infant punishable as child abuse.”[37]The only exceptions include cases in which “the newborn is irreversibly comatose, if treatment would prolong its death, or if treatment would be inhumane,” and a physician’s decision of how to treat cannot be based on abstract concepts such as quality of life.[38]With this newly heightened focus on newborns, especially handicapped newborns, hospitals and their physicians became more reluctant to automatically defer to the parents’ wishes.[39]If a newborn’s parent or parents denied treatment, the parent had to “show that the child was comatose, terminally ill, or that treatment would be futile or virtually futile.”[40]However, many found the CAA standards to be overly demanding because the standards seemed to disregard the impact of these situations on family and the importance of family autonomy.[41]“Because parents (and other children) will bear the burdens of caring for the child with severe impairments, they should have the right to refuse resuscitation or treatment in such cases.”[42]

While it is important to consider impacts on parents and families in these situations, allowing parental choices to overrule the best interest of the impaired child would challenge “the principle that all persons who are conscious and not imminently dying should have equal access to needed medical services.”[43]If a parent elected to withhold treatment and that decision was upheld, the impaired infant would be left defenseless and without potential for recovery or a sustainable life. One attempt to reconcile the differences between upholding the parents’ decision and providing for the newborn states that in cases where parents wish to withhold treatment, treatment is only required if the child possesses “some threshold level of cognitive ability” or potential capability of human interaction.[44]This, however, prompts questions of how to determine or prove cognitive ability or potential capability of human interaction and whose responsibility it is to prove these abilities.

Regardless of complications or discrepancies, this piece of legislation aimed to advocate for infants and children in need of medical assistance and while its concrete legal impact is relatively undetermined, it succeeded in demanding more attention to the care of infants, specifically disabled infants, across the United States.

C. The United Nations Convention on the Rights of the Child

Another piece of prominent legislation on the rights and protection of children in medical situations is the United Nations Convention on the Rights of the Child. Known as the CRC, it is “an ambitious international human rights treaty that strives to balance the two contrasting points of view [of viewing children as vulnerable and viewing children as members of society] by giving fresh attention to the latter.”[45]This treaty stresses the importance of the best interest of the child and the child’s right to participation in decisions[46]viewing them as “agents who shape their own lives.”[47]However, these principles may conflict because promoting autonomy of children may compromise the pursuit of the child’s best interest weakening the authority of adults who may know better and be able to act better for the child’s health and well-being.[48]

Another concern with regards to this treaty is the possible threat of the CRC on the privacy of the family and the parents’ domain over their children.[49]If the child can be autonomous, this contradicts the right of authority which parents hold over their children, a right which is very highly valued in the United States. It is because of this that the CRC has not been implemented in the United States.[50]While this legislation could be very prominent in protecting the rights and autonomy of children, it is reasonable to expect that there would be extreme repercussions in taking rights and authority away from parents.

 

IV. Ethical Predicaments

Cases involving children, especially children with disabilities, have many ethical implications.

A. Decision Making- Autonomy, Parents, Third Party

It is relatively obvious that a child, especially an infant, does not have the same decision-making capability as an adult, but that does not justify disregarding the child entirely. In the article Treatment decision regarding infants, children and adolescents,Dr. Christine Harrison states “all infants, children and adolescents—regardless of physical or mental disability—have dignity, intrinsic value, and a claim to respect, protection, and medical treatment that serves their best interest.”[51] It is important to notice in this quote that Harrison specifies their best interest. She does not include reference to the family or to the perceptions and opinions of medical personnel. This is because the most prominent and most important factor in medical decisions should remain the patient. While it would be cavalier to disregard all other influencing factors, the inclusion of too many outside considerations without giving proper attention to the baby or child itself dismisses the child to an unjust level of insignificance.

It is unethical to hold any sort of disregard towards infants and children. Because of their gross incapability to autonomous action, the parents, of infants and young children especially, need to be their unwavering advocate for life, health, and success. The decision to be a parent holds an enormous amount of responsibility and is based on the assumption that parents will always be the advocate for their children, regardless of the difficulties they face.

B. Treatment of Disability

This responsibility of advocacy is even more important in the case of disability. In the article A Child’s Voice vs. a Parent’s Control, Soo Jee Lee states “a mentally challenged child must overcome a double-layered perception of incompetency.”[52]Infants born with disabilities cannot help the fact that they have the disability nor can they help themselves because they are incapable as newborns. As this level of helplessness increases, the level of responsibility of the parent increases, and the unethicality of withholding treatment increases.

There is almost always a possibility for improvement of condition in a child provided they are given substantial care. It is unethical for a parent to essentially give up on their child before the child is able to act for itself otherwise.

V. Concluding Statements

If a parent is the primary decision maker, they should decide based on the assumption that it is in the child’s best interest to live. It is unethical to withdraw or withhold treatment until there has been enough time to obtain all necessary information about all available treatment methods and their respective consequences. It may be difficult to define what “enough time” is, but it could simply be defined as how much time it takes for the parents’ decision to be upheld in court after all necessary appeals have been made and processed.

In the case of Baby Doe, had prolonging care been given to extend the infants life, even if only for a short period of time, the child could have had enough time to be given a second chance. If Baby Doe were provided with nutrition and hydration intravenously during the decision-making process, a thoughtful decision involving the parents, court and medical personnel could have been completed instead of having the decision made permanent through the death of Baby Doe. Basing the interpretation of parental decisions on the assumption that they focus on the best interest of the child, it is possible and even likely that this assumption is still true even when electing to let the baby die; parents may assume, in that moment of stress and terror after discovering that their child is severely impaired and struggling, that death would be best for their child. This is why it is so imperative that care is given to the infant to prolong its life regardless of parents’ wishes until sufficient time has passed to obtain all necessary information and multiple opinions from medical personnel so a full, thoughtful decision can be made and the child can be given the best chances for a positive healthy life.

 

 

Bibliography

Black, Lee. “Limiting Parents’ Rights in Medical Decision Making.” Virtual Mentor. May 05, 2010. Accessed December 1, 2017. http://journalofethics.ama-assn.org/2006/10/hlaw1-0610.html.

Diekema, Douglas S. “Parental Decision Making.” Parental Decision Making: Ethical Topic in Medicine. Accessed December 1, 2017. https://depts.washington.edu/bioethx/topics/parent.html.

Harrison, Christine. “Treatment decisions regarding infants, children and adolescents.” Paediatrics & Child Health. February 2004. Accessed December 1, 2017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720471/.

Lee, Soo Jee. “A Child’s Voice vs. a Parent’s Control: Resolving a Tension Between the Convention on the Rights of the Child and U.S. Law.” Columbia Law Review 117:687 (2017): 687-727.

“LexisNexis® Academic.” LexisNexis® Academic & Library Solutions. Accessed December 1, 2017. http://www.lexisnexis.com/hottopics/lnacademic/?verb=sr&csi=270077&sr=cite%2825 Ga. St. U.L. Rev. 835%29.

Merrick, Janna C. “Federal Intervention in the Treatment of Handicapped Newborns: Baby Doe Regulations and the 1984 Child Abuse Amendments.” Policy Studies Review 8, no. 2 (1989): 405-19.

Resnik, Jack. “The Embryo Project Encyclopedia.” The Baby Doe Rules (1984) | The Embryo Project Encyclopedia. May 12, 2011. Accessed December 1, 2017. https://embryo.asu.edu/pages/baby-doe-rules-1984.

Robertson, John A. “Extreme Prematurity and Parental Rights after Baby Doe.” The Hastings Center Report 34, no. 4 (2004): 32-39. doi:10.2307/3528691.

Vaughn, Lewis. Bioethics: principles, issues, and cases. New York; Oxford: Oxford University Press, 2017.

 

[1]Jack Resnik, “The Embryo Project Encyclopedia.” The Baby Doe Rules (1984) | The Embryo Project Encyclopedia

[2]Janna C. Merrick, “Federal Intervention in the Treatment of Handicapped Newborns: Baby Doe Regulations and the 1984 Child Abuse Amendments.” in Policy Studies Review, 405

[3]Ibid.

[4]Lewis Vaughn, “Bioethics: principles, issues, and cases” (New York; Oxford), 9

[5]Douglas S. Diekema, “Parental Decision Making.” Parental Decision Making: Ethical Topic in Medicine. (University of Washington School of Medicine)

[6]“LexisNexis® Academic.” LexisNexis® Academic & Library Solutions.

[7]Ibid.

[8]Diekema, “Parental Decision Making”

[9]Christine Harrison, “Treatment decisions regarding infants, children and adolescents.” Paediatrics & Child Health

[10]Ibid.

[11]Ibid.

[12]Ibid.

[13]Diekema, “Parental Decision Making”

[14]Lee Black, “Limiting Parents’ Rights in Medical Decision Making.” Virtual Mentor.

[15]Ibid.

[16]Ibid.

[17]Black, “Limiting Parents’ Rights in Medical Decision Making.”

[18]“LexisNexis® Academic.” (LexisNexis® Academic & Library Solutions.)

[19]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[20]Ibid.

[21]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[22]Soo Jee Lee “A Child’s Voice vs. a Parent’s Control: Resolving a Tension Between the Convention on the Rights of the Child and U.S. Law.” in Columbia Law Review, 687

[23]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[24]Diekema, “Parental Decision Making”

[25]Diekema, “Parental Decision Making”

[26]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[27]“LexisNexis® Academic.” (LexisNexis® Academic & Library Solutions.)

[28]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[29]Diekema, “Parental Decision Making”

[30]Resnik, “The Embryo Project Encyclopedia.”

[31]Ibid.

[32]Ibid.

[33]Ibid.

[34]Ibid.

[35]Ibid.

[36]John A. Robertson, “Extreme Prematurity and Parental Rights after Baby Doe.” The Hastings Center Report, 34-38

[37]Resnik, “The Embryo Project Encyclopedia.”

[38]Ibid.

[39]Robertson, “Extreme Prematurity and Parental Rights after Baby Doe.” 34

[40]Ibid.

[41]Ibid.

[42]Ibid., 36

[43]Ibid., 36

[44]Robertson, “Extreme Prematurity and Parental Rights after Baby Doe,” 36-37

[45]Lee “A Child’s Voice vs. a Parent’s Control: Resolving a Tension Between the Convention on the Rights of the Child and U.S. Law,” 687

[46]Ibid., 695

[47]Ibid., 693

[48]Ibid., 699

[49]Ibid., 700

[50]Lee “A Child’s Voice vs. a Parent’s Control: Resolving a Tension Between the Convention on the Rights of the Child and U.S. Law,” 726

[51]Harrison, “Treatment decisions regarding infants, children and adolescents.”

[52]Lee “A Child’s Voice vs. a Parent’s Control: Resolving a Tension Between the Convention on the Rights of the Child and U.S. Law,” 715

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