Refusing Medical Treatment: Do You Have the Right to Say No?

Key Points:

• Individual autonomy is a fundamental value in Western medical systems.
• Courts have upheld the right of patients to choose their own medical treatment, even when their decisions may lead to health impairment or death.
• The right to refuse medical treatment can only be overridden when a patient is deemed by a court to be lacking in decisional capacity.

Case Scenario: A 60-year-old patient who is COVID-19 positive undergoes experimental in-home IV treatment. While at home the next day following the procedure, someone is insistently knocking at the patient’s door. The patient and spouse are surprised because they are under quarantine and are not expecting anyone. They open the door. An individual identifies themself as a nurse from the hospital that provided the IV treatment and states they are there to hospitalize the patient. The patient and spouse are startled by this, as they were informed that the in-home IV treatment was performed to prevent hospitalization. The patient has never met this nurse. Moreover, the patient’s fever has been remitting and, although fatigued, feels much improved. The nurse states that it is easier and safer for staff to monitor the patient’s progress in the hospital as opposed to their home. The patient states that they are feeling much better and prefer to be at home to recover. The nurse insists on the hospitalization and dismisses the patient’s fears and distress about being in a hospital as “silly.” The nurse intimates that the patient’s IV procedure was approved only if they agreed to the staff’s recommendations. The patient again declines hospitalization.

Does this patient have to follow the nurse’s directive?

Patients have a right to choose.

The right to choose was articulated over a century ago. Mary Schloendorff was admitted in 1908 to the hospital for the treatment of a stomach disorder that was later identified to be a fibroid tumor. Surgery was recommended. Ms. Schloendorff declined the surgery but consented to an examination under anesthesia, during which time the doctors performed the surgery anyway. A lawsuit was filed by Ms. Schloendorff after she developed gangrene in her left arm, which she attributed to the surgery.

In Schloendorff v. Society of New York Hospital (1914), Justice Cardozo wrote, “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” (p.93). The court opined that the surgery, as it was not consented to, represented medical battery.

In Western medical systems, individual autonomy (along with informed consent, end-of-life decisions) represents a fundamental value. It endorses a commitment to an individual’s rights to choose. The right to accept or reject what (if any) medical interventions falls along with other core rights, such as where to live, whom to marry, and how to worship. This right to choose or decline medical treatment can only be overridden if there is evidence that an individual lacks decisional capacity.

Choice can only be overridden by a finding of a lack of decisional capacity.

Patients who are competent have the right to refuse medical treatment. Only those who are deemed by a court to be incompetent (or lacking decisional capacity) may be subject to having their refusal for medical treatment overridden. Lack of competence may stem from cognitive deficits, such as severe dementia, or emotional deficits, such as severe clinical depression where the refusal of treatment may be in effect passive suicidality (Weinberger, Sreenivasan, & Garrick, 2014). However, even with severe mental illness, the mere diagnosis of such a condition would not preclude an individual from refusing medical treatment (Department of Mental Health and Hygiene v. Kelly, 2007).

Lack of decisional capacity is not the same as going against medical advice.

An individual of sound mind has the right to make a decision that medical professionals may disagree with, even if that decision may lead to a health impairment or even death. In the case of Vacco v. Quill (1997), the U.S. Supreme Court affirmed a common law right to preserve individual autonomy, the right to refuse treatment, and the right to be free from unwanted touching. The basic principle underlying this is that individuals have a right to self-determination. This rights-driven model for medical care highlights that individual autonomy and one’s right to determine the course of their treatment be a primary goal.

Criteria for decisional competence.

Noted mental health ethicists suggest four core criteria for decisional competence: the ability to communicate a choice; understand the relevant information; appreciate the situation and its consequences; and reason about treatment options (Appelbaum, 2007; Berg, Appelbaum & Grisso, 1996).

Case scenario continued: Ten minutes later, there is another knock at the door where the patient finds two emergency medical team (EMT) professionals and an ambulance. The EMT state that they received a call from a nurse who identified themself as from the patient’s hospital, indicating that this COVID-19-positive patient’s condition required hospitalization. Therefore, the patient needs to be transported to the hospital.

Some patients, despite decisional competence, may capitulate to a medical professional’s advice. This may occur because they are, as in our case example, in a vulnerable position. For example, a patient may be suffering from a condition that is potentially lethal and taking experimental treatment. Under such conditions, a patient may feel pressured to consent to treatment that they do not want. Part of that pressure may be the belief that if they do not consent, they may experience adverse consequences, such as blocked access to needed care in the future.

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Case scenario continued: The patient refuses to go to the hospital in the ambulance, stating to the EMT that they do not know this nurse. In the meantime, the spouse calls their outpatient doctor who was not aware of the recommendation for hospitalization and does not believe the patient needs to be hospitalized. The patient asserts their right to refuse hospitalization to the EMT personnel. They acknowledge this as the patient’s right and leave.

In this case scenario, the unknowns inherent to experimental IV treatment may have been the medical rationale to initiate hospitalization. The impetus for the hospitalization may have been based on a beneficent intent; that is, it was initiated with the best interests of the patient in mind. It could be argued that the circumstances regarding COVID-19 were such that it was highly prudent to follow a conservative route of surveillance, as in a hospital setting. However, there is no indication prior to the nurse’s arrival that the patient was informed of imminent initiation of hospitalization. Informed consent is an essential underpinning of patients' rights. Moreover, there is no indication that this patient is decisionally incompetent.

The right to refuse treatment, even life support, was affirmed in Vacco v. Quill (1997), a landmark U.S. Supreme Court decision. The case underscored an individual’s right to their bodily integrity and their right to refuse “unwanted touching.” The COVID-19 global pandemic is undoubtedly going to continue to present many medical, psychological, legal, and ethical dilemmas for patients, medical professionals, and society. Thus, it is critical that we all know a patient’s rights regarding medical treatment.