Parental Decision Making

Parental Decision Making

NOTE: The UW Dept. of Bioethics & Humanities is in the process of updating all Ethics in Medicine articles for attentiveness to the issues of equity, diversity, and inclusion.  Please check back soon for updates!

 

Author:

Douglas S. Diekema, MD, MPH, Adjunct Professor, UW Dept. of Bioethics & Humanities

 

 

 

Topics addressed:

  • Who has the authority to make decisions for children?
  • What is the basis for granting medical decision-making authority to parents?
  • When can parental authority to make medical decisions for their children be challenged?
  • What are some examples of a decision that places a child a significant risk of serious harm?
  • What if parents are unavailable and a child needs medical treatment?
  • Should children be involved in medical decisions even though their parents have final authority to make those decisions?
  • What happens when an older child disagrees with her parents about a medical treatment?
  • Under what circumstances can minors make medical decisions for themselves?
  • Is there a resource that summarizes the various state laws regarding adolescent consent?

Adult patients have the moral and legal right to make decisions about their own medical care. Because young children are not able to make complex decisions for themselves, the authority to make medical decisions on behalf of a child usually falls to the child's parents.

Who has the authority to make decisions for children?

Parents have the responsibility and authority to make medical decisions on behalf of their children. This includes the right to refuse or discontinue treatments, even those that may be life-sustaining. However, parental decision-making should be guided by the best interests of the child. Decisions that are clearly not in a child's best interest can and should be challenged.

What is the basis for granting medical decision-making authority to parents?

In most cases, a child's parents are the persons who care the most about their child and know the most about him or her. As a result, parents are better situated than most others to understand the unique needs of their child and to make decisions that are in the child’s interests. Furthermore, since many medical decisions will also affect the child's family, parents can factor family issues and values into medical decisions about their children.

When can parental authority to make medical decisions for their children be challenged?

Medical caretakers have an ethical and legal duty to advocate for the best interests of the child when parental decisions are potentially dangerous to the child's health, imprudent, neglectful, or abusive. As a general rule, medical caretakers and others should challenge parental decisions when those decisions place the child at significant risk of serious harm. When satisfactory resolution cannot be attained through respectful discussion and ethics consultation, seeking involvement of a State child protection agency or a court order might be necessary.

What are some examples of a decision that places a child a significant risk of serious harm?

Childhood vaccination provides an example of the kinds of factors that must be weighed in making this determination. While most physicians believe it is in a child’s best interest to receive the routine childhood vaccinations and therefore recommend them to parents, they do not generally legally challenge parents who choose not to vaccinate their children. This is because in a well-vaccinated community the risk of contracting the vaccine-preventable illness and suffering harmful consequences from the infection are quite small. However, this calculation might shift if a clinician is faced with an unvaccinated child who has suffered a puncture would from a dirty nail. In the latter case, the risk of tetanus (a serious and almost always fatal disease if not prevented) has become significant, and the provider would be justified in seeking the power of the State (through a court order or involvement of child protective services) to assure that the child receives the vaccination and treatment necessary to prevent tetanus in a high risk situation.

What if parents are unavailable and a child needs medical treatment?

When parents are not available to make decisions about a child's treatment, medical caretakers may provide treatment necessary to prevent harm to the child's health. In general, a child can be treated or transported without parental permission if the child has an emergency condition that places his or her life or health in danger, the legal guardian is unavailable or unable to provide permission for treatment or transport, and treatment or transport cannot be delayed without further endangering the child. Providers should administer only those treatments necessary to prevent harm to the child until parental permission can be obtained. Examining a child who presents to medical attention is always appropriate in order to establish whether a threat of life or health exists.

Should children be involved in medical decisions even though their parents have final authority to make those decisions?

Children with the developmental ability to understand what is happening to them should be allowed to participate in discussions about their care. As children develop the capacity to make decisions for themselves, they should be given a voice in medical decisions. Most children and adolescents lack full capacity to make complex medical decisions, however, and final authority to make medical decisions will usually remain with their parents.

What happens when an older child disagrees with her parents about a medical treatment?

The wishes of competent older children regarding their medical care should be taken seriously. If the medical caretaker judges a child competent to make the medical decision in question, she should first attempt to resolve the issue through further discussion. If that fails, the medical caretaker should assure that the child's voice has been heard and advocate for the child. In intractable cases, an ethics consultation or judicial hearing should be pursued.

Under what circumstances can minors make medical decisions for themselves?

There are three situations in which minors (those who have not reached the age of majority in their state of residence) have the legal authority to make decisions about their health care. 
First, every state has emancipated minor laws which designate minors who meet certain criteria as having the authority to make decisions (including medical decisions) for themselves. Although emancipated minor laws vary from state to state, most states recognize an emancipated minor as a person who meets one of the following criteria:

  • Economically self-supporting and not living at home
  • Married
  • A parent
  • On active duty in the armed services

Second, most states recognize some minors as sufficiently mature to make medical decisions on their own behalf. A determination that a minor is mature usually requires that the minor be older than 14 years of age and have demonstrated a level of understanding and decision-making ability that approximates that of an adult. While some states allow physicians to make this determination, most require a judicial determination of mature minor status.

Third, all states make condition-specific exceptions to the requirement of parental consent. These laws may allow an adolescent to seek treatment without parental consent for sexually transmitted diseases, pregnancy, contraception, psychiatric disorders, and drug or alcohol abuse.

Is there a resource that summarizes the various state laws regarding adolescent consent?

The Guttmacher Institute publishes a summary of the adolescent consent laws that can be found at: www.guttmacher.org/statecenter/spibs/spib_OMCL.pdf

  • Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995; 95: 314-317.
  • Diekema DS. Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention. Theoretical Medicine & Bioethics 2004; 25: 243-264.
  • Diekema DS and the Committee on Bioethics, American Academy of Pediatrics. Responding to Parental Refusals of Immunization. Pediatrics 2005; 115: 1428-1431.
  • English A, Shaw FE, McCauley MM, Fishbein D. Legal Basis of Consent for Health Care and Vaccination for Adolescents. Pediatrics. 2008; 121: S85-S87.
  • Hanisco CM. Acknowledging the Hypocrisy: Granting Minors the Right to Choose Their Medical Treatment. New York Law School Journal of Human Rights 2000; 16: 899-932.
  • Miller VA, Drotar D. Discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy and their relationship to diabetes-related conflict and adherence to treatment. Journal of Pediatric Psychology 2003; 28(4): 265-74.
  • Ross LF. Children, Families and Health Care Decision-making. New York: Oxford University Press, 1998.
  • Sher EJ. Choosing for Children: Adjudicating Medical Care Disputes between Parents and the State. New York University Law Review 1983; 58: 157-206.
 
 
 
 

CASE STUDIES

A 4-year-old with an obviously broken forearm is brought to the emergency department by her baby-sitter. Both the baby-sitter and emergency room staff have attempted to reach her parents without success.

Can you treat this child without parental permission?
 

Case Discussion

Your first duty is to the health and welfare of the child. Having attempted unsuccessfully to reach her parents for consent, you should proceed with x-rays and treatment of her fractured forearm. Rapid treatment of the child's pain and fracture are clearly in her best interest. When optimal treatment requires immediate intervention, treatment should not be delayed even if consent has not been obtained.

An ill-appearing 2-year-old with a fever and stiff neck appears to have meningitis. His parents refuse a lumbar puncture on the grounds that they have heard spinal taps are extremely dangerous and painful.

What are your obligations in this case? How should you proceed?

Case Discussion

A lumbar puncture is the only way to diagnose meningitis and a delay in treatment could cause significant harm to the child. Complications from the procedure are very rare, and the benefit in this case is likely to be substantial. There is not time to obtain an ethics consult or court order. The physician should attempt to address the parents' misconceptions about lumbar punctures and to reassure them about the safety of the procedure and perhaps offer to use appropriate pain control methods. A second opinion from another physician may prove helpful.

Should these efforts not result in parental permission, the physician is justified in contacting the state’s child protection agency to obtain the authorization necessary to proceed with the procedure and treatment of the child. While parental authority to make medical decisions for their children is broad, it does not include choices that may seriously harm their children. As long as the physician has used reasonable clinical judgment in determining the need for the lumbar puncture, legal liability should be minimal.

A 5-year-old child has just had his second generalized tonic-clonic seizure in a 4-month period. You have recommended starting an anticonvulsant. The child’s parents have concerns about the recommended medication and would prefer to wait and see if their son has more seizures.

How should you respond to the parents’ request?

Case Discussion

The parents have the authority to make a choice of this nature. In general, courts have been reluctant to overrule parental wishes in most situations where that decision does not place the child at considerable risk. Though failure to start an anticonvulsant may increase the risk of further seizures, this does not pose a substantial enough risk to the child to justify overriding the parents' wishes, especially given the potential risks and side effects associated with the medication. Though you may not agree with their decision, the decision is a reasonable one that does not place their child at substantial risk of increased harm.