Am Fam Physician. 1998;58(9):2161-2164
TR is a 28-year-old woman with acquired immunodeficiency syndrome (AIDS), nephropathy associated with human immunodeficiency virus (HIV) infection and renal failure requiring dialysis. She lives at home with her husband, five-year-old daughter and mother. Previously, she worked as a sales associate at an upscale department store.
Recently, TR has become increasingly noncompliant with her medical treatment. At various times she has stopped taking her antiretroviral medications, her prophylactic medications and other medications related to her renal disease. Following several changes in her medication regimen, she ultimately agreed to take her prophylactic medications, but not her antiretroviral medications.
During the holiday season, she stopped dialysis treatment for a 10-day period. She was found at home in a near-comatose state and was brought to the emergency room in severe renal acidosis, with a potassium level of 9.8 mEq per L (9.8 mmol per L) and third-degree heart block, with a heart rate in the 30-bpm range. Near death, she was intubated, dialyzed and successfully resuscitated. She recovered quickly. When asked about her behavior, TR said she just didn't like going for dialysis treatment. She denied that she wanted to die, saying she wanted to live for her daughter. A psychiatrist found her to be competent, as well as depressed, although not incapacitated by her depression. She was discharged from the hospital and agreed to continue her dialysis treatment.
One month later, her mother called to say that TR had stopped going to dialysis, again for a 10-day period. TR again denied that she wanted to die, or that she was even depressed. When asked to explain her behavior, she said she didn't like going to dialysis. At times, when her husband would drop her off at the center for treatment, she would take a bus home without having received treatment. One time, after being connected to the dialysis machine, she claimed she needed to use the restroom. When she was disconnected from the dialysis machine, she left the dialysis center and returned home.
TR's husband and mother could not convince her to go to dialysis. Her physician discussed TR's situation with a nephrologist, a psychiatrist and the hospital attorney. Because she still seemed competent, yet refused life-sustaining treatment, her family physician wondered whether TR could be hospitalized without her consent or whether the court could appoint a legal guardian to make decisions regarding her medical care.
Ultimately, the question was whether to honor TR's expressed wishes to let her continue her fatal course of inaction or whether to somehow intervene, perhaps against her will.
Both competent and incompetent patients have a legally protected right of autonomy. This right of autonomy includes the right to forgo medical treatment. Any court faced with the issue of deciding whether to override a patient's decision with respect to medical treatment must resolve three questions: (1) Is the patient competent? (2) If the patient is competent, what is the patient's desire with respect to the proposed treatment? (3) Does the state have any compelling reasons to deviate from the patient's desire?
In the District of Columbia, a patient is presumed competent unless a determination to the contrary is made.1,2 A competent patient2–7 is defined as being “capable of the informed exercise of a choice with an opportunity to evaluate knowledgeably the options available and the risks attendant upon each.”8 Thus, a competent patient is able to function as a decision maker, acting in accordance with her preferences and values.8
A Competent Adult's Right to Forgo Medical Treatment
The right to refuse medical treatment is grounded within the common law right to self-autonomy. This right is protected by the common law doctrine of informed consent, permitting a patient to make an informed choice, if competent to do so, to accept or forgo medical treatment. The doctrine of informed consent is rooted in the concept of bodily integrity that is ingrained in the common law of the District of Columbia.17 Before medical treatment can be administered, a patient is entitled to an explanation of the proposed treatment, alternative therapies, the nature and degree of risks and benefits from receiving or abstaining from the proposed treatment and the right to consent.17 Administration of medical treatment without a patient's consent, despite the fact that the treatment may be beneficial or even necessary to preserve a patient's life, may result in civil liability.9,12,13
By statute, individuals are entitled to control their own health care decisions and to have these decisions respected when expressed in a durable power of attorney18,19 or communicated to others.20 A competent person also has a constitutionally protected liberty interest to refuse unwanted medical treatment.21 The due process clause in the Constitution of the United States prevents depriving a person of life, liberty and property, without due process of law.22 In other words, every individual has the right “to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law.”23
Nevertheless, the right to refuse medical treatment is not absolute. The court will often balance the patient's right of autonomy with a state's interests. In some instances, the right to decline life-sustaining medical treatment may yield to countervailing societal interests.16,24 The most commonly noted state interests include preserving life, preventing suicide, safeguarding the integrity of the medical profession and protecting innocent third parties who may be harmed by the patient's decision about medical treatment.24,25 On balance, the right to autonomy ordinarily outweighs any countervailing state interests, and competent persons generally are permitted to refuse medical treatment, even at risk of death.24,26
Indeed, one court has stated that while “the possibility [exists] that a state's conflicting interest may be so compelling that a patient's wishes must yield, we anticipate that such cases will be extremely rare and truly exceptional.”27
An Incompetent Adult's Right to Forgo Medical Treatment
An incompetent adult patient has a right to forgo medical treatment under the doctrine of substitute judgment.24,28,29 Under this doctrine, an incompetent patient's right to refuse treatment is exercised through a surrogate decision maker who will carry out the incompetent patient's wishes as closely as possible. The court, legal guardians, close family members or religious leaders use their judgment to determine what they believe the incompetent person, if competent, would have done under the circumstances.30–32 In other words, the decision maker must act in the same manner, and with the same motives and considerations, as the incompetent person if he or she were capable of rational decision making.24,29,33–35 Again, even though the decision of the incompetent patient, reached through substitute judgment, must outweigh relevant state interest, the patient's decision will be upheld in virtually all cases.36,37
The patient in the scenario presented here, who has AIDS, HIV, nephropathy and dialysis-dependent renal failure, has decided not to undergo dialysis for the treatment of her renal disease. It is unlikely that a court of law in the District of Columbia or a legal guardian making medical decisions, if appointed, would order TR to undergo dialysis. Case law defines a competent patient as one who can evaluate the options available and the risks attendant upon each, and act in accord with his or her preferences and values.8 Consistent with the courts' definition of competent, statutory law governing the appointment of a guardian defines a capacitated individual as one who can appreciate the nature and implications of a health care decision, make a choice regarding the alternatives presented or communicate that choice in an unambiguous manner.3 In this case, a court is likely to find TR competent and not incapacitated.
While the input of a health care professional is important, it is not determinative. A court must independently assess an individual's abilities and limitations. In this scenario, a psychiatrist determined that TR was medically competent. She was also found to be depressed, yet the depression did not incapacitate her. It is evident that TR is capable of making a decision about the treatment of her renal disease. First, while TR is aware that certain medications have been prescribed for her, she is only willing to take the prophylactic medications. Second, consistent with her ability to make a decision in accord with her preferences, she has often avoided dialysis. On two occasions, TR stopped going to dialysis for 10 days. On both occasions she stated that she “didn't like going to dialysis.” Consistent with these verbal statements was her choice to have the dialysis machine disconnected once it was connected and return home without receiving treatment.
Although TR has stated that she does not want to die, neither her competence nor capacity rest with her undergoing dialysis. Her behavior and verbal statements are consistent with a person who wants to live, but who is unwilling to live if her existence means that she must undergo certain types of treatment to which she objects. In one court case in which a patient who needed a lifesaving blood transfusion refused to have it based on religious beliefs, the court did not challenge the patient's competence simply because the patient said, “I wish to live, but with no blood transfusions.”39
Even if the court determines that TR is incompetent, ordering her to receive dialysis is unlikely. A court that finds a patient incompetent must determine the patient's wishes by any means available, and must abide by those wishes unless there are truly extraordinary or compelling reasons to override them.24 Two of the state's interests are clearly not evident here. First, this is not a case of suicide. The law in the District of Columbia recognizes the difference between affirmatively inflicting injury on one's self and merely refusing to submit to life-sustaining medical treatment, thus allowing an illness to take its natural course.40,41 Second, this is not a case where the medical profession's ethical integrity is at issue because no health care professional is being forced to provide treatment against TR's wishes.42
The state's interest in preserving life must be truly compelling to justify overriding a competent person's right to refuse medical treatment; such an occasion is rare.43 The only possible truly compelling state interest is the state's interest in protecting the life of an innocent third party. In the past, courts of law have overridden a patient's refusal of life-sustaining medical care under this interest when the patient had young children.44 However, more recent decisions do not override the patient's consent if there is evidence that the welfare of the children will be provided for in the patient's absence.9 Although TR has a five-year-old daughter, there is evidence that shows that TR's husband and mother play an active role in her daughter's life and could be available to take care of the daughter should TR die. The extent to which the needs of this child would be taken care of in TR's absence could influence the court's decision to possibly override TR's objection to submitting to dialysis.
If a court is not asked to make a decision about whether TR is competent and should undergo dialysis and, instead, a guardian for medical decision making is sought, a finding of incapacitation must be made. Those parties seeking the appointment of a guardian have an extremely difficult burden to overcome. They must prove to the court by clear and convincing evidence that the individual is incapacitated (impairment of one's ability to receive and evaluate information effectively or to communicate decisions such that one cannot act in a manner to avoid serious physical injury or illness)5 and that the appointment is necessary as a means of providing continuing care and supervision of the allegedly incapacitated individual.45
Again, a psychiatrist found TR to be competent and not incapacitated. Moreover, case law establishes that mere refusal of life-sustaining treatment does not mean the patient is incapacitated.9 Even if a guardian is appointed, that individual is required by statute to make decisions, including refusal or withdrawal of consent, based on the known wishes of the patient.46 Here, TR's conduct and verbal statements indicate that she does not like nor want to undergo dialysis treatment.
Competent and incompetent persons who choose to forgo life-sustaining medical treatment are protected by common law and by statutory and constitutional rights. Their right is not absolute, however, and must outweigh state interests of preserving human life; preventing suicide; safeguarding the integrity of the medical profession; and protecting innocent third parties. However, only in rare circumstances does the state's interest outweigh the patient's desire to refuse life-saving medical treatment.