20 Section I ■ Preparation and Support

patient-centered approach, on the other hand, will at times

require considerable time and effort, often in circumstances

where time may be limited. In addition, though the patientcentered approach is meant to be based on what the parties

knew before the procedure and applied objectively, in practice it can be difficult to apply so rigidly.

For these reasons, courts considering informed consent

issues often end up with an approach that looks more like a

hybrid of the physician-based and patient-based approaches:

A physician should consider what other physicians in the

field would disclose in the circumstances; what this patient,

parent, or guardian would want to know about the options;

and his or her competence with both medical terms and

with the language in use (21). There is a lot to keep in

mind—including the need to consider federal or state law,

hospital rules, and professional association guidelines, along

with the particular circumstances of the patient and/or family. If difficult issues arise, the physician should consider

consulting with hospital legal counsel before proceeding.

Adequate Informed Consent in the

Context of Neonates

As discussed, the doctrine of informed consent is based, in

part, on the idea that respect for a patient’s personal autonomy is primary. When the patient is a neonate and, therefore, cannot express autonomy, informed consent is more

complicated than when the patient is a competent adult. By

necessity, obtaining informed consent from a neonatal

patient is really a matter of obtaining “informed permission” from the patient’s parent or guardian (22). When seeking this permission, the physician must exercise judgment

with respect to whether the parent or guardian is competent

to make the necessary decisions and, ultimately, whether

the parent or guardian’s decisions are in the best interest of

the patient. At the same time, the treating physician must

be careful not to simply substitute his or her judgment for

that of the parents’ or guardians’.

 Coercion, Manipulation, and Persuasion

Consent that is not freely given is not consent. For that

reason, the health care provider must be careful that his

or her interactions with a neonate’s parents or guardians

are free from coercion, whether by implicit or explicit

threats or inducements (22). For example, the provider

should not give the impression that the quality of the

neonate’s treatment will suffer if the parents or guardians do not consent to a procedure, and the provider

should not make any additional support (monetary or

otherwise) for the neonate contingent on consent.

Obviously, manipulating the parents or guardians by

deliberately providing incomplete or untrue information is unacceptable. Given that there is an information

imbalance between the parties, it is especially important

that the information the parents or guardians receive is

accurate. However, there is no requirement that the

physician be impartial and hide his or her opinion, as

long as this opinion is based on medical evidence and

professional experience, rather than religious or personal bias. It is appropriate for the physician to make a

case for a particular intervention, and the parents or

guardians will expect recommendations.

 Competency of Parents or Guardians and the State

Consent is valid only if the consenting party is legally

competent to give consent. The health care provider

may begin with the assumption that the neonate’s parents or guardians are competent, capable of understanding and balancing the medical information provided,

and capable of making and communicating a decision.

However, if there are indications that the parents or

guardians are not competent, the treating physician

should not act on their proffered consent or refusal and

should consult hospital legal counsel before proceeding. Some examples of circumstances in which one may

question competency to consent include parents or

guardians who abuse drugs or alcohol, who show signs

of untreated mental illness, or who are minors.

The parents or guardians should not be disqualified

from making medical decisions simply because they

speak a foreign language. In addition, even when parents or guardians are able to make themselves understood, their understanding of the prevailing language

may not be optimal. Thus, all efforts should be made to

provide the information in the primary language of the

parents or guardians, including locating a qualified

medical interpreter or interpreting service (23).

 Absent Parents or Guardians

Under common law, when an adult patient requires

emergency life-saving treatment, a physician may

assume the patient’s informed consent for that treatment. Similarly, in an emergency, a physician may

assume informed consent if an infant’s parent or guardian is absent (or otherwise unable to make the necessary decision) (1).

An infant’s parents or guardians may delegate the

right to make medical decisions for the infant to another

person. To do so, the parents or guardians must have

the right to make decisions in the first place and must

be legally and medically competent to decide to delegate their rights. In addition, the proxy taking over the

decision making must be legally and medically competent to make the medical decisions. If the parents or

guardians are absent and have made no delegation,

state law may determine the proxy (usually there is a

hierarchy of family members but an unrelated proxy,

guardian ad litem, may be appointed). In any event, the

physician should be sure that he or she inquires about,

and documents in the patient chart, the source and

extent of the proxy’s authority (4).

When one parent is absent, the parents’ marital status and the custody arrangement for the infant may be

Chapter 2 ■ Informed Consent for Procedures 21

important. If the parents are married, consent of only

one of the parents will be adequate in most states.

However, if the parents are not married or there has

been a legal separation or divorce, obtaining proper

consent may be more complicated. Whether one parent or the other (or both) have the legal right to make

medical decisions will depend on state law, as well as

judicial orders or settlement agreements, if they exist.

With help from hospital legal counsel, if necessary, the

physician should determine whether the parent present

can legally provide consent for the infant.

 Best Interests of the Patient

When a competent adult patient refuses a procedure

that would save his life, the treating physician must

respect the patient’s choice. With neonatal patients,

this is more complicated. A physician has a duty to the

infant patient to provide medical care appropriate to

the patient’s needs, which is a duty separate from the

physician’s responsibilities to the patient’s parents or

guardians. The physician’s duty to the patient persists

even if the patient’s parent or guardian refuses to consent to a needed procedure or requests a nonmedically

indicated procedure. Both the physician and the parent

or guardian are required to act in the “best interest of

the child” and, generally, the parent or guardian’s medical decision is presumed to be in the best interest of

the child (22). The physician is not entirely powerless

to overcome that presumption, however.

When a physician considers a parent or guardian’s

medical decision to justify intervention (or the physician otherwise questions the competency of the parent

or guardian), the hospital may decide to notify the

appropriate government agency overseeing child welfare or to petition a court directly, depending on state

law. The state may appoint a guardian ad litem or take

custody of the infant temporarily to determine what

would be in the infant’s best interests. These

“intrusion[s] into and interference[s] with familial relationships between a parent and child can rise to the

level of a substantive due process violation” (24).

Parents have brought suits claiming as much in cases

where the state (in the form of a state-run hospital, state

agency, or court) took away the parents’ right to make

medical decisions for their children. However, for a

parent’s claim that the state’s action violated the parent’s substantive due process rights, a court must find

that the state’s actions “shock ...the conscience” (25).

This is a very fact-dependent determination; when serious, irreparable consequences may result if a procedure

is not performed, the court is likely to find that there

has been no substantive due process violation.

The other side of the due process coin is procedural

due process: Were the state’s procedures to deprive an

individual of his rights in a particular circumstance constitutionally adequate? “The family is not beyond regulation in the public interest, however, nor are rights of

parenthood beyond limitation” (24,26). Even in the

context of refusing medical treatment on medical

grounds, courts have held that a parent’s “right to practice religion and make parental decisions does not

include the liberty to expose a child to ill health or

death” (24,26). Though parents and guardians have primary responsibility for a child’s health care decisions,

the state also has an interest in protecting those who

cannot protect themselves (parens patriae) and in the

“health, safety, welfare of the children within its borders” (13,24,25). So long as the state only deprives a parent of the right to make medical decisions for his or her

child in service of those legitimate state interests, a

court is likely to find that there has been no violation of

the parent’s procedural due process rights. This is true

even where the parent has not had notice or an opportunity to be heard prior to the state’s action; if the delay while

giving notice or holding a hearing may further harm the

child, the state may act without notice or a hearing (24).

The risk in such a system is that physicians, with the

weight of the state behind them, will take the right to

make medical decisions away from parents and guardians, even when the parents and guardians have made an

informed decision not to consent. Because the state’s

decisions are necessarily informed by the treating physician, the balance of power in these situations is decidedly

tilted toward the physician. However, the state’s interest

and, therefore, its power to override the parent or guardian’s decisions “diminishes as the severity of a [child’s]

affliction and the likelihood of death increase” (27,28).

There must be proof that the procedure in question is the

best way to serve the child’s welfare; it cannot only be

that the procedure would prolong the child’s life for

some minimal amount of time. The legal presumption is

that the parents or guardians make health care decisions,

and that is so even when the choice may be to stop treatment of a very ill child. The physician should be careful

not to disregard a parent or guardian’s considered decisions, though the physician may disagree strongly (22).

Although a physician may not simply refuse to continue

care of (abandon) a patient, neither is the physician

obliged to provide patient care which he or she considers

unethical or not in the patient’s best interest. In this circumstance, the treating physician, with the full knowledge and participation of the parents or guardians, may

refer the case for consideration by an ethics committee

and/or to another physician who is willing to follow the

treatment plan requested by the parents or guardians.

References

1. American Academy of Pediatrics, Committee on Pediatric

Emergency Medicine. Consent for emergency medical services

for children and adolescents. Pediatrics. 2003;111(3):703.

2. Bartal v. Brower, 993 P.2d 629 (Kan. 1999).