Medical treatment

Refusing medical treatment: do you have the right to say no?

Key points:

  • Individual autonomy is a core value in Western medical systems.
  • Courts have upheld the right of patients to choose their own medical treatment, even when their decisions may result in ill health or death.
  • The right to refuse medical treatment can only be overridden when a patient is found by a court to lack decision-making capacity.

Case scenario: A 60-year-old patient positive for COVID-19 undergoes experimental IV treatment at home. While he is at home the day after the operation, someone knocks insistently on the patient’s door. The patient and his spouse are surprised because they are in quarantine and are not expecting anyone. They open the door. A person identifies herself as a hospital nurse who provided the intravenous treatment and states that she is there to hospitalize the patient. The patient and his spouse are surprised by this, since they have been informed that the intravenous treatment at home has been carried out to avoid hospitalization. The patient has never met this nurse. Also, the patient’s fever has gone down and, although tired, she feels much better. The nurse says it’s easier and safer for staff to monitor patient progress in the hospital rather than at home. The patient states that he feels much better and that he prefers to be at home to recuperate. The nurse emphasizes hospitalization and dismisses the patient’s fears and distress about being in the hospital as “stupid”. The nurse implies that the patient’s IV procedure was only approved if he accepted the staff’s recommendations. The patient again refuses hospitalization.

Should this patient follow the nurse’s directive?

Patients have the right to choose.

The right to choose was enunciated over a century ago. Mary Schloendorff was admitted to hospital in 1908 for treatment of a stomach disorder which was later identified as a fibroid. Surgery was recommended. Ms Schloendorff refused the operation, but consented to an examination under anaesthesia, during which the doctors performed the operation anyway. A lawsuit was brought by Ms Schloendorff after she developed gangrene in her left arm, which she attributed to surgery.

In Schloendorff v. New York Hospital Corporation (1914), Judge Cardozo wrote: “Every human being of adult age and sane has the right to determine what should be done with his own body. (p.93). The court held that the surgery, because it was not consented to, represented medical battery.

In Western medical systems, individual autonomy (with informed consent, end-of-life decisions) is a fundamental value. It endorses a commitment to an individual’s right to choose. The right to accept or reject medical interventions (if applicable) is in addition to other fundamental rights, such as where to live, whom to marry and how to worship. This right to choose or refuse medical treatment can only be overridden if it is proven that an individual lacks decision-making capacity.

The choice can only be annulled by the finding of a lack of decision-making capacity.

Competent patients have the right to refuse medical treatment. Only those who are found by a court to be incompetent (or lacking decision-making capacity) can have their refusal of medical treatment reversed. Lack of competence can stem from cognitive deficits, such as severe dementia, or emotional deficits, such as severe clinical depression where refusal of treatment may actually be passive suicidality (Weinberger, Sreenivasan, & Garrick, 2014) . However, even with severe mental illness, the mere diagnosis of such a condition would not prevent a person from refusing medical treatment. (Department of Mental Health and Hygiene v. Kelly, 2007).

Lack of decision-making capacity is not the same as going against medical advice.

A sane person has the right to make a decision with which health care professionals may disagree, even if that decision may result in impaired health or even death. In the case of Vacco vs. Quill (1997), the United States 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 underlying basic principle is that individuals have the right to self-determination. This rights-based model of medical care emphasizes individual autonomy and the right of everyone to determine the course of their treatment as a primary goal.

Criteria for decision-making competence.

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

Case scenario continued: Ten minutes later there is another knock on the door where the patient finds two Emergency Medical Team (EMT) professionals and an ambulance. The EMT says it received a call from a nurse who identified herself as being from the patient’s hospital, indicating that the patient’s COVID-19 positive condition required hospitalization. Therefore, the patient must be taken to the hospital.

Some patients, despite their decision-making competence, may capitulate to the advice of a medical professional. This can happen because they are, as in our example, in a vulnerable position. For example, a patient may be suffering from a life-threatening disease and undergoing an experimental treatment. Under such conditions, a patient may feel pressured to consent to treatment they do not want. Part of this pressure may be the belief that if they do not consent, they may suffer adverse consequences, such as blocked access to needed care in the future.

Case scenario continued: The patient refuses to go to the hospital by ambulance, telling the EMT that he does not know this nurse. In the meantime, the spouse calls his ambulatory doctor who was unaware of the recommendation for hospitalization and does not believe that the patient should be hospitalized. The patient asserts his right to refuse hospitalization to the EMT personnel. They recognize this as a patient right and leave.

In this case scenario, the unknowns inherent in the experimental IV treatment may have been the medical rationale for initiating hospitalization. The impetus for hospitalization may have been based on benevolent intent; that is, it was initiated in the best interest of the patient. One could argue that the circumstances surrounding COVID-19 were such that it was very prudent to follow a careful monitoring pathway, such as in a hospital setting. However, there is no indication before the arrival of the nurse that the patient was informed of an impending hospitalization. Informed consent is an essential foundation of patients’ rights. Furthermore, there is no evidence that this patient is incapable of making decisions.

The right to refuse treatment, even life support, has been affirmed in Vacco vs. Quill (1997), a landmark decision of the United States Supreme Court. The case underscored an individual’s right to bodily integrity and their right to refuse “unwanted touching”. The global COVID-19 pandemic will undoubtedly continue to present many medical, psychological, legal and ethical dilemmas for patients, healthcare professionals and society. Thus, it is essential that we know all the rights of a patient in relation to medical treatment.