Health care providers (such as physicians, nurse practitioner, and physician assistants) are normally expected to keep patient information confidential and obtain (informed) consent from patients before treating them. When the patient is a minor, however, questions arise about whether the provider has the same moral obligations of confidentiality and respect for patient choice (autonomy). Is it morally acceptable for minor patients to keep health information private from their parents? Do they have the right to make their own healthcare decisions?
Some thinkers believe that minor patients should have little or no privacy from their parents and that parents should retain all decision-making capacity. The opposite perspective is that minors should be granted as much privacy and free-choice about their healthcare as possible. Positions in the middle are also possible.
Another area of controversy occurs when a parent makes a decision about healthcare for their child but the provider disagrees with the wisdom of the decision. Should the provider try to take healthcare decision-making out of the hands of the parent if the provider is convinced the parental decision is not in the best interests of the child?
We typically assume that parents have a basic moral right to know what is going on in the lives of their young children. So naturally if a young child needs healthcare, the provider will tell the parents the diagnosis of the child’s problem. Young children are generally not thought to have any moral or legal right to keep such information private from their parents.
There is another, more pragmatic reason involving “informed consent” for parents needing to know about a young child’s healthcare. Adults seeking diagnosis and treatment of an illness are asked to give consent to the various tests and procedures that might be involved. To be able to give consent such patients must have what has been called “decision-making capacity” or “decisional capacity.” Such a patient must be able to understand the nature of the test or treatment in question and any risks and benefits that the provider explains, and then the patient must be able to come to a decision about whether or not to participate. The patient must not be incapacitated by mental impairment, alcohol, drugs, or by the disease itself.
Young children cannot understand the nature of most medical procedures or assess the expected benefits in light of the possible risks. Spelling out complicated procedures in detail will confuse and may scare them. When dealing with a child most providers would attempt to explain any intervention in simplistic terms that the child is likely to be able to grasp. As some kind of formality the child may be asked to “consent” to a procedure, but providers typically believe they should focus on obtaining informed consent from the parents or guardian.
In order to obtain such consent, the provider is going to have to share relevant health information about the child patient with the parents. So the parents need to know. Of course children and their parents have the same moral right to have such information kept private from the general public that adult patients typically are held to have.
Many ethicists believe that as children gain knowledge and maturity during and after adolescence, they have a right to know as much information about themselves as they can understand. Providers commonly try to explain some information about their diagnosis and treatment to children of this age lest by hiding it from them the adolescent gets the wrong idea of what is happening.
Much more controversial is whether parents have a right to know everything about the health and lifestyle practices of their children as they grow beyond adolescence. Teenagers commonly want control of their own lives and privacy from their parents so there may be a clash between what the parent wants to know and what the teen wants to reveal. During a routine office visit the provider may learn of teen patient tobacco use, sexual activity, alcohol consumption or drug use. A teenage patient may even be coming to the office or clinic specifically for birth control pills, treatment for a sexually transmitted disease, pregnancy testing, or an elective abortion, and they could very well want details of this kept from parents.
The two opposing views are that the teen should be allowed to keep these details private and, on the other hand, that the parents should be able to know everything.
The first view is that teen privacy should be respected out of moral and prudential considerations. Morally, the teenage patient is gaining a right to some privacy as he or she gains maturity. Prudentially, if the teenage patient knows significant details of what they say to the healthcare provider will be passed along to their parents, they will be much less likely to share it with the provider. They may not even seek treatment for sexually transmitted diseases or substance abuse. This failure to seek treatment may harm the teen patient and even pose a public health risk.
On the other hand, parents may believe they have a right to know the basics about what is occurring in the lives of their children. Parents believe they have a moral right and obligation to raise their children with the proper values and guidance and they may believe that to provide this they need to know what is going on in their children’s lives. Incidentally, unless treatment is at a free clinic, as a practical matter the parents will probably get the bill or insurance forms associated with the encounter and that could clue them in about what went on.
Perhaps the best course in most situations is some kind of middle ground between the two extremes, but working this out may be tricky. Experts suggest having the adolescent patient, the parents, and the provider discuss “ground rules” at a routine healthcare visit. It might be agreed that normally details of the teen patient’s healthcare visits will not be shared with their parents unless they stray from a treatment plan or seem at risk of harming themselves. For some parents, however, this is going too far and they will not allow this degree of privacy to their children. Some thinkers claim that it is better for the parents to be more involved than in a “hands-off” approach but that this could come by having the teen rather than the provider disclose details to the parents.
Decision-making for teenage patients is likewise a controversial issue. For adolescents, legally, decision-making power still rests with the parents. As teenagers get older they may be declared “mature minors” or “emancipated minors” and gain some legal standing. To the extent that one believe teenagers have some right to autonomy, perhaps developing but limited, one will claim that morally they have an increasing right to make their own healthcare decisions.
Mature Minors and Emancipated Minors
Some states and countries recognize a legal category of “mature minor,” a person under eighteen, and depending on jurisdiction sometimes as young as twelve, who can for some purposes be treated as an adult. Age isn’t the sole criterion – also considered for healthcare purposes is the ability to understand diagnoses, treatment options, and consequences of consent or refusal, as well as education and overall maturity.
The capabilities of “mature minor” may vary from state to state and within a state with respect to particular functions. For example, a patient might get treatment at thirteen for drug abuse without parental knowledge or consent, but could have to wait until fourteen for confidential treatment for a sexually transmitted disease.
The legal category of “emancipated minor” is generally above that of mature minor. Emancipated minors are under eighteen but recognized as adults. The basic idea for such a category is that a teenager who is living apart from parents, independently, managing their own finances, and maybe even married, is in effect acting as an adult already. Emancipation by the courts ends the right of parents to control the minor and allows the minor to enter into some kinds of legal contracts.
“Mature minor” and “emancipated minor” are common phrases but not used consistently by all states or countries. Some jurisdictions recognize both, others equate them, and capabilities vary. The key point, though, is that these kinds of legal status may allow the minor patient legally to give informed consent for healthcare apart from any knowledge or permission of their parents.
Conflict between Parent and Provider over Treatment of Minors
A traditional model of the preferred relationship between physician and patient was that of “paternalism.” In that model, the physician acted in whatever way he or she felt would most benefit the patient, even though sometimes this seemed to fail to respect the patient’s own right, freedom, or autonomy to know details of the diagnosis, all the treatment options, and make healthcare decisions for himself or herself.
These days that model has been often replaced by models emphasizing more respect for the autonomy of the patient. The patient has the right to know about their diagnosis and options and make their own decisions. On some models the provider is invited or expected to provide advice and recommendations and work through the decision process with the patient based on patient values and preferences. Respect for autonomy is not the only principle guiding healthcare professionals, though, and refraining from harming the patient and acting for the patient’s benefit are still important and must be balanced against respecting patient autonomy.
Though for adult patients paternalism has been somewhat replaced with “shared decision” models, the relation between provider and minor patient is considered by some to be properly still largely paternalistic. Of course it is assumed that parents will act paternalistically toward their minor children, and healthcare providers are expected to respect the autonomy of the parents in making healthcare decisions for their children, but healthcare providers may also have a moral obligation to look out for the interests of the minor patient apart from the decisions of the parents. This is a paternalistic role beyond that assumed in interaction with adult patients. If an adult patient refuses to consent to a treatment the physician thinks is in the patient’s best interests, the physician should acquiesce and respect patient autonomy. But if the parents refuse to consent to a treatment for their child patient that the physician thinks is in the child’s best interests, the question arises of whether the physician should take a more paternalistic attitude toward the situation and ask the court to force to allow the treatment to proceed. The situation is further complicated by the fact that the child may agree with the parents. So we could wind up in a situation in which the provider is battling the parents and the child to treat the child in a way the provider believes is best but the parents and child believe is wrong.
Many ethicists, noting that a child is often highly influenced by his or her parents and not fully autonomous, would claim that the child may be “deciding” against their own best interests in such a situation and the provider should proceed. Courts have recognized the legitimacy of providers seeking to overrule parents in providing blood transfusions, for example, for conditions threatening the child’s life. Sometimes parents claim religious reasons for refusing to allow children to obtain transfusions, antibiotics, or surgery but courts have often refused to allow such religious considerations to preclude administering lifesaving treatment.