Patients' Rights

Consent, particularly informed consent, is the cornerstone of patients' rights. Consent is based on the inviolability of one's person. It means that doctors do not have the right to touch or treat a patient without that patient's approval because the patient is the one who must live with the consequences and deal with any dis-comfort caused by treatment. A doctor can be held liable for committing a BATTERY if the doctor touches the patient without first obtaining the patient's consent.

The shift in doctor-patient relationships seems inevitable in hindsight. In one early consent case, a doctor told a woman he would only be repairing some cervical and rectal tears; instead he performed a hysterectomy. In another case, a patient permitted her doctors to examine her under anesthesia but insisted that they not operate; the doctors removed a fibroid tumor during the procedure. In yet another case, a doctor assured a man that a proposed operation was simple and essentially without risk; the patient's left hand was paralyzed as a result of the surgery.

Consent must be voluntary, competent, and informed. Voluntary means that, when the patient gives consent, he or she is free from extreme duress and is not intoxicated or under the influence of medication and that the doctor has not coerced the patient into giving consent.

The law presumes that an adult is competent, but competency may be an issue in numerous instances. Competence is typically only challenged when a patient disagrees with a doctor's recommended treatment or refuses treatment altogether. If an individual understands the information presented regarding treatment, she or he is competent to consent to or refuse treatment.

Consent can be given verbally, in writing, or by one's actions. For example, a person has consented to a vaccination if she stands in line with others who are receiving vaccinations, observes the procedure, and then presents her arm to a HEALTHCARE provider. Consent is inferred in cases of emergency or unanticipated circumstances. For example, if unforeseen serious or life-threatening circumstances develop during surgery for which consent has been given, consent is inferred to allow doctors to take immediate further action to prevent serious injury or death. Consent is also inferred when an adult or child is found unconscious, or when an emergency otherwise necessitates immediate treatment to prevent serious harm or death.

Consent is not valid if the patient does not understand its meaning or if a patient has been misled. Children typically may not give consent; instead a parent or guardian must consent to medical treatment. Competency issues may arise with mentally ill individuals or those who have diminished mental capacity due to retardation or other problems. However, the fact that someone suffers from a mental illness or diminished mental capacity does not mean that the individual is incompetent. Depending on the type and severity of the disability, the patient may still have the ability to understand a proposed course of treatment. For example, in recent years most jurisdictions have recognized the right of hospitalized mental patients to refuse medication under certain circumstances. Numerous courts have ruled that a mental patient may have the right to refuse antipsychotic drugs, which can produce disturbing side effects.

If a patient is incompetent, technically only a legally appointed guardian can make treatment decisions. Commonly, however, physicians defer to family members on an informal basis, thereby avoiding a lengthy and expensive competency hearing. Consent by a family member demonstrates that the doctor consulted someone who knows the patient well and is likely to be concerned about the patient's well-being. This will probably be sufficient to dissuade a patient from suing for failure to obtain consent should the patient recover.

Legal, moral, and ethical questions arise in competency cases involving medical procedures not primarily for the patient's benefit. These cases typically arise in the context of organ donation from one sibling to another. Many of these cases are approved in the lower courts; the decisions frequently turn on an examination of the relationship between the donor and recipient. If the donor and recipient have a relationship that the donor is aware of, actively participates in, and benefits from, courts generally conclude that the benefits of continuing the relationship outweigh the risks and discomforts of the procedure. For example, one court granted permission for a kidney transplant from a developmentally disabled patient into his brother because the developmentally disabled boy was very dependent on the brother. In another case, a court approved a seven-year-old girl's donation of a kidney to her identical twin sister after experts and family testified to the close bond between the two. Conversely, a mother successfully fought to prevent testing of her three-and-a-half-year-old twins for a possible bone marrow transplant for a half brother because the children had only met the boy twice and were unaware that he was their brother.

Married or emancipated minors, including those in the ARMED SERVICES, are capable of giving their own consent. Emancipated means that the minor is self-supporting and lives independently of parents and parental control. In addition, under a theory known as the mature minor doctrine, certain minors may consent to treatment without first obtaining parental consent. If the minor is capable of understanding the nature, extent, and consequences of medical treatment, he or she may consent to medical care. Such situations typically involve older minors and treatments for the benefit of the minor (i.e., not ORGAN TRANSPLANT donors or blood donors) and usually involve relatively low-risk procedures. In recent years, however, some minors have sought the right to make life- or-death decisions. In 1989, a state court first recognized that a minor could make such a grave decision. A 17-year-old leukemia patient refused life-saving blood transfusions based on a deeply held, family-shared religious conviction. A psychologist testified that the girl had the maturity of a 22-year-old. Ironically, the young woman won her right to refuse treatment but was alive and healthy when the case was finally decided. She had been transfused before the slow judicial process needed to decide such a difficult question led to a ruling in her favor.

Some state statutes specifically provide that minors may give consent in certain highly charged situations, such as cases of venereal disease, pregnancy, and drug or alcohol abuse. A minor may also overrule parental consent in certain situations. In one case, a mother gave consent for an ABORTION for her 16-year-old unemancipated daughter, but the girl disagreed. A court upheld the daughter's right to withhold consent.

Courts often reach divergent outcomes when deciding whether to interfere with a parent's refusal to consent to a non-life-threatening procedure. One court refused to override a father's denial of consent for surgery to repair his son's harelip and cleft palate. But a different court permitted an operation on a boy suffering from a severe facial deformity even though his mother objected on religious grounds to the accompanying blood transfusion. In another case, a child was ordered to undergo medical treatments after the parents unsuccessfully treated the child's severe burns with herbal remedies.

Courts rarely hesitate to step in where a child's life is in danger. To deny a child a beneficial, life-sustaining treatment constitutes child neglect, and states have a duty to protect children from neglect. One case involved a mother who testified that she did not believe that her child was HIV positive, despite medical evidence to the contrary. The court ordered treatment, including AZT, for the child. Many other cases involve parents who want to treat a serious illness with nontraditional methods or whose religious beliefs forbid blood transfusions. Cases involving religious beliefs raise difficult questions under the First Amendment's Free Excise of Religion Clause, COMMON LAW, statutory rights of a parent in raising a child, and the state's traditional interest in protecting those unable to protect themselves.

When a child's life is in danger and parental consent is withheld, a hospital seeks a court-appointed guardian for the child. The guardian, often a hospital administrator, then consents to the treatment on behalf of the child. In an emergency case, a judge may make a decision over the telephone. In some cases, doctors may choose to act without judicial permission if time constraints do not allow enough time to reach a judge by telephone.

In 1982, a six-day-old infant with Down's syndrome died after a court approved a parental decision to withhold life-saving surgery. The child had a condition that made eating impossible. The baby was medicated but given no nourishment. The public furor over the Baby Doe case eventually helped spur the DEPARTMENT OF HEALTH AND HUMAN SERVICES to create regulations delineating when treatment may be withheld from a disabled infant. Treatment may be withheld if an infant is chronically and irreversibly comatose, if such treatment would merely prolong dying or would otherwise be futile in terms of survival of the infant, or if such treatment would be virtually futile in terms of survival and the treatment would be inhumane under these circumstances.

Although courts overrule parental refusal to allow treatment in many instances, far less common are cases where a court overrides an otherwise competent adult's denial of consent. The cases where courts have compelled treatment of an adult usually fall into two categories: when the patient was so physically weak that the court ruled that the patient could not reflect and make a choice to consent or refuse; or when the patient had minor children, even though the patient was fully competent to refuse consent. The possible civil or criminal liability of a hospital might also factor into a decision. A court typically will not order a terminally ill patient to undergo treatments to prolong life.