A patient finds that his treatment is worse than the disease

A 78-year-old man with long-standing class III congestive heart failure is hospitalized in the intensive care unit with recurrent, life-threatening ventricular dysrhythmias. An implantable cardioverter-defibrillator (ICD) is placed with informed consent. Several days later, after the ICD has delivered multiple shocks appropriately, the patient asks for the device to be “turned off.” He states the shocks are unacceptably uncomfortable, have made him a “nervous wreck” and that he'd rather live with the risk of experiencing a potentially fatal dysrhythmia in the absence of a working ICD than experience more shocks.

His son, who has been closely involved in his care for years, supports his father. The attending cardiologist says that with adjustment of his medications this problem should resolve. Nevertheless, the patient remains adamant. The cardiologist says that agreeing to the request is tantamount to euthanasia since the patient's condition is “treatable.” The cardiologist questions the patient's mental status and requests a psychiatric consultation.

Commentary

Most experienced physicians have cared for patients who have refused or requested the withdrawal of life-sustaining treatments such as mechanical ventilation, hemodialysis, artificial hydration and nutrition, and others. Patients also commonly refuse, request the withdrawal of, or discontinue on their own treatments that aren't so obviously life-sustaining, such as medications. In these situations, the clinician's duty is to understand the reasons for the patient's decision and ensure that it is informed.

The indications for ICDs have expanded and these devices are being used with increasing frequency. As a result, physicians likely will care for increasing numbers of patients with ICDs.

In the U.S., patients have the right to refuse or request the withdrawal of unwanted medical treatments even if doing so results in death. From an ethics standpoint, the principle of respect for patient autonomy underpins this right. This principle requires that the patient be informed of the risks, benefits, and alternatives to refusing or withdrawing the treatment.

From a legal standpoint, the U.S. Supreme Court, in the Cruzan case in 1990, affirmed the right of competent persons (and incompetent persons via explicit statements such as advance directives and surrogate decision-makers) to refuse unwanted medical treatments. Notably, there are no ethical or legal distinctions between withholding a treatment and withdrawing a previously consented treatment after it has been started.

In this case, the cardiologist's intent is to benefit the patient by continuing a treatment that is effective for the patient's condition. However, the cardiologist certainly would not have forced implantation of the device against the patient's will; doing so would have violated patient autonomy. Likewise, continuing ICD therapy after implantation in a patient who no longer wants it violates patient autonomy and may cause harm due to shocks and anxiety.

The cardiologist equates ICD deactivation with euthanasia. This assertion, however, is inaccurate. In Vacco v. Quill in 1997, the Supreme Court distinguished withholding and withdrawing life-sustaining treatments from physician-assisted death.

“The distinction comports with fundamental legal principles of causation and intent,” the court said. “First, when a patient refuses life-sustaining medical treatment, he dies from an underlying fatal disease or pathology; but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.”

Therefore, in our case, if the patient were to die of a fatal dysrhythmia following ICD deactivation, the cause of death would not be ICD deactivation, but rather the underlying heart disease. The court also stated that the right to refuse unwanted treatments was grounded in not a “right to hasten death, but on well established, traditional rights” to be left alone.

The cardiologist legitimately asserts the shocks should resolve with adjustment of medications and, therefore, questions the patient's mental status. However, refusals and requests to withdraw treatments are not necessarily irrational. Rather, these decisions reflect the patient's view that the treatment is burdensome and does not achieve his or her health care goals. If the clinician truly believes the patient lacks decision-making capacity, then requesting psychiatric consultation is reasonable.

Notably, like our patient, many patients with ICDs experience anxiety. In fact, ICD-specific anxiety and fears such as fear of shocks, device malfunction and death are the most common psychological symptoms experienced by patients with ICDs and experiencing shocks is associated with these symptoms. These patients, however, should not be construed as lacking decision-making capacity. Instead, they should receive appropriate psychiatric care.

Cardiologists and their patients rarely engage in advance care planning regarding the circumstances in which ICD deactivation might occur. The reasons for this observation are unclear. Cardiologists and patients may regard the ICD differently than other life-sustaining treatments and discussions about device deactivation may seem inappropriate. After all, at the time of implantation, the device's purpose is to prevent death. Another reason may be that the cardiologist and patient are unaware of the ethical and legal permissibility of device deactivation.

What if the patient remains steadfast in his or her decision and granting the request violates the doctor's conscience? If a thorough discussion fails to resolve the conflict, then the cardiologist should transfer the patient's care to another physician.

Follow-up

The cardiologist conducted a care conference with the patient, the son and other members of the health care team. The patient was determined to have decision-making capacity and remained steadfast in his desire to have his ICD “turned off.”

Ethics consultation affirmed the ethical and legal permissibility of device deactivation. The cardiologist was reassured that the patient's decision was informed and that device deactivation was not akin to euthanasia. The cardiologist deactivated the ICD and made arrangements for ongoing cardiac care. In return, the patient agreed to be open to future discussions about the indications for ICD therapy.

Paul S. Mueller, FACP, is a member of ACP's Ethics, Professionalism and Human Rights Committee and an associate professor of medicine at the Mayo Clinic in Rochester, Minn. He directs the ethics curriculum at Mayo Medical School. Send in your comments on this case or others from your practice.

The opinions expressed in this column represent the views of the contributor and do not reflect the opinion of ACP or the ACP Ethics, Professionalism and Human Rights Committee. For ACP case studies, go online.