Parental Authority in Medical Decision–Making for Children: Scope and Limits
In the United States autonomy of a patient is commonly recognized as the foundation stone of medical ethics with regard to choices having been made in medical care. The competent patient is regarded as an autonomous and reasonable person being self-governing over his/her destiny and a final decision-maker for all choices with regard to medical manipulations and interventions basing on informed consent as a requisite condition for diagnosis and treatment.
Rooted in the constitutional right to privacy, the importance of autonomy as a guiding principal in medical decision–making like in other forms of decision–making has been well established and is essentially unchallenged in the United States (Rosenfeld 173).
The enactment of ‘living will’ statutes by most States entitling the competent individuals with the right to refuse curative actions even in the most critical cases of terminal illness despite of attitudes of their family members and physicians proves wide acceptance of the autonomy principle. Furthermore, in 1991 the federal Patient Self-determination Act went into effect providing for all adult patients of medical settings should be informed about this right to formulate an advance directive (Annas 1211). This principle has also been expanded to incompetent patients by means of substituted decision standard when a proxy defines what the patient would have wished to be undertaken under the given conditions, if he/she were still competent.
On this account the families are taking on special significance in medical decision-making (Nelson & Nelson 803). A number of court decisions and legislative deeds last time clearly demonstrate a trend toward giving families larger decisional authority especially in the field of disputes relating to terminal care (Areen 94).
The adult patient is considered to be competent in most conceptions relating to decision-making in health care while it is obvious that children are incompetent to make these decisions as well as they should not have hypothetical autonomy in this field especially when a child is young. This means in most cases decisions about children’s medical care has to be made by their parents. In spite of apparent plainness of this assumption here many ethical and legal aspects are involved such as its relation to the child’s autonomy waxing with his/her maturing; limits of parental authority in making decisions for their child, withdrawal or refusal of care and participation in medical research; possibility to override parents’ decisions under the certain circumstances basing on the considerations by the physicians etc.
These issues are the subject of current study aimed at exploration what principles should guide parental decisions in medical care for their children observing interest of the child as well as respect for his/her developing personality; scrutiny of the limits of parental discretion in defining and balancing their child’s health care needs; and identification of the cases where parental authority could be overridden by medical care givers.
The Family as the Locus of Decision-Making
forChildren in Medical Care
Some scholars specializing in bioethics advocate the determinative part of the family in children’s health care decision-making (Ross, “Health Care Decisionmaking” 41). Such opinion is at variance with a conception promoted by most of American bioethics which considers autonomy of the patient to be the primary ethical principle in medical care decision-making.
At the same time there is another idea in pediatric science when ethicists contend that in making many medical decisions parents easily could be taken away (Bartholome, “Hearing Children’s” 4), while in pediatrics relationship between the physician and the patient customarily involve three parties: the doctor, the child, and his/her parents. In this triplet the latter represent not only surrogate decision-makers taking into account the child’s incompetence, furthermore they are considered to have inalienable right and liability to take part in medical decisions applied to their children (Buchanan ; Brock 49).
The last commonly held view at the family as the locus of decision-making for children in medical care seems to be the most balanced and rational one. Rationale for this is obvious. The doctors provide just for children’s temporary medicinal needs while parents are responsible for and in fact are providing for all of their needs throughout considerable part of their lives when they are maturing and until they become autonomous persons. As a general rule, parents are “the better judge as they have a more vested interest in their child’s well-being and are responsible for the day-to-day decisions of child-rearing” (Ross, “Health Care Decisionmaking” 45).
It does not mean that in cases, when the child is mature enough to understand medical manipulations applied in his/her treatment, children should be disregarded in the decision-making process. The physician and parents may clarify these manipulations, diagnosis and plans for future curative measures to the child and gain his/her cooperation. In such a way parents could involve their children in the decision-making process which has a positive effect as they attain children’s active support and give them the possibility to learn how such decisions has to be made (Hardwig 8).
Nevertheless, when the child disagree with the decision taken by parents his/her resolve could not be considered conclusive one (Ross, “Health Care Decisionmaking” 45) as often children even competent ones are not able to weight all the aspects of their medical condition and future outcomes of the assumed decision. Hence there is moral and pragmatic rationale why the parents form a party which has to possess final decision-making authority in the triplet doctor-child-parents.
Children are in general regarded as incompetent to deliver lawfully binding decisions concerning their medical care, so parents are authorized to make such decisions on their behalf. Parental authority is not absolute as in some cases when parents make resolves which conflicts with the best interests of the child as per opinion of the physician, the state may interfere. But such cases are not so widespread to reflect the prevailing tendency to regard family as the most contributing agent in the process of decision-making in medical care for children.
The Scope of Parental Authority in
Medical Decision-Making for Children
Decision making is at the heart of all parent-physician relationships. Progressively more while talking about decision-making in medical care the notions of informed consent are invoked which prescribe to entitle the patient with the right to make decisions about his/her medical cure with regards to own values and life priorities. With rare exceptions, nevertheless, this model cannot be implemented in pediatric medicine. Children, especially those in early years, are not able to make decisions concerning their own treatment, and even though they have certain attitude to medical manipulations being done to them their opinions habitually are not and should not be determinative (Pasquerella 165). As children are maturing, their points of view in many cases acquire more substantial respect, but not until they become adults or reach legal emancipation they are lawfully empowered to make medical decisions basing on their own opinions.
As long as children do not make their own health care decisions, somebody else has to take this responsibility. The people most likely to be involved in these decisions are parents and doctors. Often, parents make decisions alone or with the advice of people who are not physicians – they decide to care for a child with an upper respiratory infection or other light sickness themselves and may listen to the suggestions of family members or the neighboring pharmacist (Pasquerella 167).
Much more infrequently when the symptoms of the child’s disease state are severer, physicians take complete charge in prescribing treatment. Under some circumstances the parents’ requests on the subject of the child’s care that diverge from the physician’s may suitably be disregarded. For the most part, however, parents and physicians collaborate in making decisions about children’s medical care.
Different models can apply to such collaboration. In some instances, physicians are very paternalistic and act as if they know what is best. At least in the outpatient setting, however, the paternalist may not be fully successful in directing treatment because the physician’s opinions and recommendations can be ignored by parents. But even more important than the practical limitations of paternalism is the fact that medical ethics increasingly rejects the paternalistic model and instead asserts that parents have a role to play in decision making as well (Gorovitz 3; Kuczewski 30; Nelson 8; Hall 466).
In part, this deference to parents is a response to the practical recognition that parents cannot be ignored if only because children live in families and decisions about their care affect the parents and should be implemented by the parents. The scholars argue that “on a more philosophical level, our society believes that parents usually try to help their children and that parents need some room for autonomy in childrearing” (Hickson & Clayton 165).
The challenge within the context of seeking and delivering care, then, is to develop appropriate collaborative relationships that suitably empower parents and physicians so that they may act in concern on behalf of children.
In addition, relationships between physicians and parents are dynamic. Once the visit to the physician is initiated by the parent, authority over the process can shift from the parent to the physician. Within the context of the medical examination and further communication with the parents, some physicians may take a fairly authoritarian stance, which may make parent-doctor communication difficult. Other physicians indicate by word or deed that they are more open, seeking to inform or engage in joint decision making.
Buchanan and Brock scrutinized how such joint decisions can be made for those who are not competent to decide for themselves. They have broken down this question into four subsections:
– what values surrogate decision makers have to support;
– who may be the surrogate decision maker;
– what principles should guide the surrogate decision maker;
– in what cases such decisions may be overridden and who should do it.
They consider that surrogates should be guided in their decision–making by a “patient-centered” focus by which they mean “that considerations of the incompetent’s own well-being and (where possible) self-determination, as opposed to the interests of others should be the primary focus” (10). When the incompetent person is the child, they add a “third substantial value […] the interest of the parents in making important decisions about the welfare of their minor children” (226), which constitute an important factor having been insufficiently appreciated in the medical care practice (Ross, “Children, Families and Health” 10).
Buchanan and Brock ascertain that parents should be their child’s surrogate decision maker both because children need a surrogate and because parents have a legitimate interest in making decisions for their children (233).
In addition to the above it is rational to note that the reason for the parents to be the surrogate decision maker lies on the surface – there are the parents who for the most part stand the outcomes of medical care options for their children, hence, at the minimum, they should have certain control over these options.
Buchanan and Brock argue that as children have never been competent, the best interest standard is the most appropriate guidance principle while making decisions for their medical treatment (94) while Ross advocates the principle of respect for persons modified to accommodate the child’s maturing personhood (“Children, Families and Health” 47).
Ross considers Buchanan and Brock’s definition of the child’s best interest to be interpreted quite narrowly (“Children, Families and Health” 42). They assert that the only interests the parents should consider are the self-regarding interests of the child (133) while Ross argues that to assume that an individual’s interests are purely self-regarding denies the intimate web in which an individual leads his/her life, and in which the interests of other family members become part of his/her own interests. Ross ascertains that if parents were permitted to consider only their child’s self-regarding interests, they would be forced to ignore some of the most important interests and goals that they and their child share as the family (“Children, Families and Health” 42).
Ross ascertains that exclusive focus on the child does not give enough weight to the child’s family with whom his interests are bound and deeply intertwined, and decision making must focus on individuals as individuals and as members of communities. Because families can have interests that are not reducible to the interests and needs of particular members, “parents must be allowed to make intra-familial trade-offs”. This does not mean that parents can sacrifice the basic needs of any child of the family, they should fulfill the basic needs of each child, and moreover, parental autonomy has to be respected. To deny that parents can weigh the common goals of the family is “to deny much of what gives our lives meaning” (“Children, Families and Health” 43).
Sometimes, nevertheless, it seems quite difficult to involve parents into decision–making process even willing to observe their parental authority to be final decision–makers. It applies to neonatal treatment when medical teams care for severely premature infants under conditions of emergency and uncertainty. Although often the doctors have no enough time to wait for decision by hesitating parents or the latter are not competent in medicine to a degree that allows them to make correct decision parents can be and should be invited into a decisional relationship with the team that enables them to assess more fully the meaning of their child’s illness (King 25).
The above considered demonstrates that the scope of parental authority in medical decision–making for children is wide and encompasses to a certain extent almost all aspects of routine medical treatment.
Limits of Parental Authority in Withdrawal or Refusal of
Medical Care for their Children
Making decisions about receiving or refusing medical diagnosis and treatment continues to challenge health care providers, legislators, lawyers and judges, ethicists, patients, and families.
As a general rule, informed parental consent is both a necessary and sufficient condition for the medical treatment of minors in the United States. Some standard common law and statutory limitations and exceptions to the general parental consent requirement relate to mandatory immunization and screening procedures which are applicable to all children, the neglect limitation where a court may override a parental decision for the individual child, the emergency treatment of children where no parental consent is required if the parent is unavailable, and various exceptions that allow minors themselves to consent to treatment (Stenger 210).
The legal framework for such decisions consists in statutes which have generally been adopted by the States for specified medical decisions. According to the most statutes the physician basing on consultation with the minor as the patient with the consent of this minor may execute a diagnostic examination for venereal disease, pregnancy, alcohol or other drug abuse or addiction and may advise, prescribe for and treat such minor regarding to the mentioned cases, all without the consent or notification to the parent. Also the physician may provide outpatient mental health counseling to any child age 16 or older upon consent of such child without the consent of the parents.
Such statutes are justified both by public health concerns (diagnosis and treatment should be encouraged and readily available for people with sexually transmitted diseases or substance abuse and for preventing teenage pregnancies and minors would be deterred from seeking medical attention if their parents were to be informed) and risk-benefit analysis (the patient does not face serious risks and choice of treatment does not involve complex alternatives) (Stenger 211).
In cases of treatment refusal initiated by the child the physicians are urged to consider the seriousness of the situation, or the risk-benefit ratio. If a treatment is elective, there is no ethical difficulty while it is reasonable that in these cases the physicians should respect the child’s decision, regardless of parental insistence on continuing medical care (Kuther 353).
According to official medical guidelines, if a minor is considered to be competent, he/she is entitled to the same degree of autonomy in decision-making as an adult patient (Committee on Bioethics 315). In disputable cases when disagreement concerning refusal or continuation of treatment occurs between the parents and the minor such disagreements are subject to counseling and consultation. The physicians should strive to provide appropriate care and be prepared to seek legal intervention if parental refusal of treatment places the patient at risk (Committee on Bioethics 316). Here legal intervention will be a last resort.
The laws that give adolescents the right to consent to treatment often do not give them the right to refuse treatment (Ross “Health Care Decisionmaking” 45). The legal right to withdraw or refuse treatment for the child belongs to his/her parents especially if it concerns routine medical care.
When parental refusal or withdrawal of medical care for the child does not reflect seriously on his/her health the physician could reach certain trade–off with the parents by means of proposing alternative treatment. But sometimes such refusals are based on religious belief such as, for example, the Jehovah’s Witnesses refuse to authorize a blood transfusion for their children, holistic beliefs when the parent are adherent to megavitamins and do not want to use chemotherapeutic medicines for the treatment of serious illnesses, or misunderstanding, for instance, when the parents do not complete their child’s course of antibiotics because the child is feeling better.
Among the most vulnerable here are the children of religiously motivated parents, as such parent does not accept rational reasons basing in their decisions solely on their religious beliefs. Pasquerella argues that allowing exemptions from statutes for religiously motivated parents who deny their children traditional medical care has provided unprecedented protection for one group at the expense of another. Even in instances where the states have aggressively sought to end this injustice and prosecute parents for the deaths of their children, the existence of various statutes thouhout the United States and differing interpretations of laws protecting the rights of parents have led to successful post–conviction appeals on the bases of vagueness and failure to provide adequate notice of the law, in violation of due process (190).
When the treatment is non-experimental and very effective, parental refusals risk their child’s medical well-being and are contrary to the principle of respect as it applies to children. However, the state should limit its interventions to those cases in which the illness is life-threatening or places the child at high risk for serious and significant disease state, and the treatment is of proven efficacy with a high probability of success. To the contrary there are cases where parents seek treatment over the objection of the providing physicians who argue that the treatment is futile and inhumane. Most of them are connected with quality-of-life judgments which properly belong to the patient and his/her surrogates. However, there may be a point when the treatment is both virtually futile and inhumane, and parents could be prohibited from authorizing such care (Ross, “Children, Families and Health” 135).
Parental Authority in Medical Research
where the Child is a Research Subject
Many codes of ethics include the possibility of participation in medical research by incompetent subjects by permitting proxy consent. Whether such consent is morally adequate, particularly when the incompetent subjects are children, was the topic of a series of articles between two American Christian theologians, Paul Ramsey and Richard McCormick, in the early 1970s. Despite contributions by many other ethicists, there remains vigorous disagreement within the medical ethics community as to the morality of a child’s participation as a research subject (Ross, “Children, Families and Health” 77).
Ramsey argued that children should never participate as research subjects in ‘non-therapeutic research’ (that is, research which offers no direct therapeutic benefit to the children subjects). He ascertained that for research to be moral it requires the informed consent of the subject. Because the child cannot give informed consent, his parents must act as his surrogate. However, parental responsibility to their child is fiduciary, and to authorize their child’s participation is a breach of this duty (13).
McCormick rejected Ramsey’s argument, using a natural law approach that states that parental consent “is morally valid precisely insofar as it is a reasonable presumption of the child’s wishes” (“Proxy Consent” 11). The child, then, would want to participate as a research subject because he ought to do so (“Proxy Consent” 12).
Ramsey’s also argued that using children as research subjects is impossible basing on the Kantian principle that persons should never be treated solely as a means, but always simultaneously as an end. He emphasized that the use of the child as a research subject in medical research which offers no direct therapeutic benefit treats the child solely as a means. While it may serve useful societal goals, it fails to serve the child subject’s interests and thus cannot be performed morally (16).
McCormick objected that participation as a research subject is consistent with treating the child as an end understood to mean a social being. The problem with this argument, as McCormick realized, is that it can require the participation of adults in research projects to which they do not give their consent, and the scholar tolerates this enforced altruism (“‘Experimentation in Children” 42).
The dispute launched by McCormick and Ramsey still goes on. The argument against opinion of Ramsey is that excluding children from research will have long-term negative consequences on the well-being of children in general (Ross, “Children, Families and Health” 79).
It seems Ramsey considers parental responsibility too narrowly. For instance, Beecher argues that parents can authorize their child to partake in medical research to promote the child’s moral development: “Parents have […] to inculcate into their children attitudes of unselfish service. […] This might be extended to include participation in research for the public welfare when it is important and there is no discernible risk” (63).
Bartholome also argues that parents have the moral authority to permit their children to participate in human experimentation in order to promote their children’s moral education (“Parents, Children, and the Moral” 45). But both scholars considered parental consent to be insufficient.
Beecher argued for both the child’s and the parents’ informed consent and given this, only permitted children over the age of fourteen to serve as research subjects (68). Bartholome allowed for the participation of children with their parents’ consent if the children could give assent, even if not effective consent (“Parents, Children, and the Moral” 45). Ross noted that the problem with both of these positions is the practical one that children are usually ill prepared to refuse requests by their physicians and parents (“Children, Families and Health” 79).
Contrary to them Ackerman ascertains that parents alone can and must decide whether their children should participate as research subjects, although he does not offer adequate guidance regarding the limits of parental authority, and whether the child’s assent is ever relevant, particularly when the risks are more than minimal (345).
In the United States, recommendations for the participation of children in research were first developed in the 1970s by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Based on the National Commission’s report, the Department of Health, Education, and Welfare (DHEW) circulated preliminary regulations in 1978. In 1983, the renovated Department of Health and Human Services (DHHS) published the revised Federal Regulations regarding the participation of children in human experimentation (Rothman 3).
The National Commission’s report began with reasoning justifying its decisions to allow children to participate in human experimentation. The Commission emphasized on “the importance of safeguarding and improving the health and well-being of children, because they deserve the best care that society can reasonably provide”.
Although the Commission acknowledged the need to do research on children, it also realized their vulnerability due to their dependence and immaturity. To minimize these problems, the Commission established strict criteria for medical research involving children (National Commission 2). Among the most important criteria the Commission provided for the sufficient provisions should be made to protect the privacy of children and their parents as well as to receive the assent of the child and permission of his/her parents. Local institutional review boards (IRBs) were established to provide observance of all the criteria (National Commission 3).
Provisions for the solicitation of consent are also under the supervision of the IRBs. For most research both parental permission and the child’s assent are necessary. The Commission clearly set up that assent of the children is necessary when they are seven years old or older (National Commission 13). The dissent given by the child has to be obligative with the exception when the research suggests the potential direct therapeutic benefit to the child. In such situation the parents have the right to override the child’s dissent, although this authority is becoming limited as the child is maturing. Besides, parental permission is not necessary if the research is related to conditions for which adolescents may receive treatment without parental consent (National Commission 16). It is obvious that the Commission leaves it to the local IRB to find the balance between parental authority and the child’s opinion in every particular case. In addition, it is rational, that the child’s assent is not necessary if the child is determined to be unable to give assent, for instance, it applies to newborns.
The Conditions Allowing Overriding Parental Authority in
Medical Decision-Making for their Children
In some cases parental authority in medical decision–making may be overridden. Buchanan and Brock considered which authorities should intervene and on what grounds they should do so. They argue that who should intervene depends upon the setting in which the decision occurs. Health care decisions, for example, can be challenged by any member of the health care team, but they should not be challenged by an uninvolved third party. Suspicions of child abuse and neglect, on the other hand, can be raised by anyone in direct contact with the child – teacher, clergyman, family physician, or neighbor – who has specific reason to consider that the child’s well-being is endangered (142).
The grounds for intervention, according to Buchanan and Brock, include three types of cases. The first includes those that disqualify the parents as the surrogates. For instance, the parents, who abuse or neglect their child, the parents who are themselves incompetent, or parents who have “a serious conflict of interest which is likely to bias their decision against the patient’s rights and interests”.
The second includes cases deserving special scrutiny on account of the particularly vulnerable position of the child, the significance of the decision’s outcomes, and the high probability of emerging conflict of interests between the child and the parents (142).
The third type of case focuses on the substance of the decisions. For instance, the treatment “must be within the range of medically sound alternatives as determined by appropriate medical community standards” (143). These cases encompass the most difficult in moral sense decisions like sibling bone marrow donation when the only hope of survival for children with a number of life-threatening illnesses is a successful bone marrow transplant. Unlike the treatment source for most therapies, the raw material for transplant therapy comes from a human being, and only close relatives could be the donor (Weisz 186).
Nevertheless, they emphasize the importance of respect for parental autonomy, even if the parents’ decision is not the best decision possible. Although they encourage parents to promote their child’s best interest, they argue that it is against the child’s interests for the state to compel parents to do so. Instead, they limit state intervention to cases in which the parents are failing to promote the child’s basic needs (235).
Disputes between the physicians and the patients over medical care have tended toward resolution in both the courts and ethics committees, with each of these bodies ultimately deciding that the informed, competent patient must be the final decision maker. Parents, too, have the authority to make medical decisions for their children, but these decisions can be challenged if the physicians do not believe they are medically reasonable.
Parental authority is based on the grounds that parents are in the best position to promote their child’s welfare, and it is undoubtful reason to permit it. It can also be justified because the family is an important social institution which gives meaning to the lives of adults as well as children.
Thus, parental active participation in the process of medical decision–making for the children is both necessary and effective. Child liberationists maintain that children need equal rights, which fails to account for the child’s need for a protected period in which to develop the skills necessary to flourish and for the parents’ right to rear their children according to their own conceptions of the good. Although parents ought to involve their child in the decision-making process, parental autonomy generally empowers them to be the final decision makers without public scrutiny or review.
But this does not mean that parental autonomy is without limits. Parental autonomy is constrained by both the state and the child. The state sets the boundaries within which family decisions are respected and when the child’s decision must be respected. Even when the child’s decision is not binding, the child’s opinion is not irrelevant; children have great influence on their parents, and their opinions should be heard. If parents cannot procure all of their child’s basic needs, then the state should intervene, as the children are not only family members, but also community members and future plenipotentiary citizens, hence their well–being and, in particularly, sound health is in direct interest of the state.
State intervention is justified if the state can act efficiently with a high likelihood of success. But if the parents have provided for their child’s basic needs, then they can and should have the freedom to balance the child’s needs and interests with their own needs, interests, and goals.
On the other hand, given the increasing recognition that most adolescents have the capacity to participate in decisions about their healthcare, parents and physicians have shown a greater willingness to include them in decision-making.
It is important to remember that children are a vulnerable population because of their dependency, and while the modern medical ethics literature is focused on respect to the competent adult patient’s role in his health care, pediatric ethics is still in its early years.
In general, parents are the better judges as they have a more vested interest in their child’s well-being and are responsible for the day-to-day decisions of child-rearing. Parents should include their children in the decision-making process both to get their active support and to help them learn how to make such decisions. At it is evident from the recent study there are both moral and pragmatic reasons why the parents should have final decision–making authority, especially in non–experimental routine medical treatment for their children.
The physicians have to balance thoroughly between respect for minors’ autonomy, respect for parental rights, and the law. There are no easy answers to these issues. Although supporting the decisions of minors is in accord with the ethical principles of beneficence and respect for autonomy, it may breach the autonomy of parents, pose harm to the family unit, and violate the law. The physicians must adhere to what is moral and ethical, using their conscience, professional guidelines, and understanding of the law while the parents have to respect the maturing personhood of their children while making decisions concerning medical care of the latter.
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