Medical, Ethical and Legal Aspects of End-of-Life Dilemmas in the ICU

Editor’s note: This is an abridged version of an article originally published in the Cleveland Clinic Journal of Medicine. The article in its entirety, including a complete list of references, can be found here.

By Jonathan Wiesen, MD, Christopher Donatelli, MD, Martin L. Smith, STD, Laurel Hyle, JD, MPH, and Eduardo Mireles-Cabodevila, MD

Amid the various clinical decisions that must be made for critically ill patients in the intensive care unit (ICU), physicians must often confront complex circumstances involving end-of-life care. Physicians receive minimal training about their jurisprudential obligations in determining end-of-life care, and misconceptions abound regarding their legal responsibilities in this area. Moreover, each state in the United States maintains its own medicolegal system, and many physicians practice medicine in multiple clinical settings and geographic areas, all of which complicate their ability to master the law. These factors can contribute to significant uncertainty among critical care physicians regarding their ethical and legal obligations for terminally ill patients.

We present a hypothetical case to elucidate the medical, ethical and legal considerations in common end-of-life situations encountered in the ICU. After placing the case in its medical and ethical contexts, a broad legal overview at the federal and state levels will be provided

Case: Refusal of care

A 22-year-old woman with severe refractory asthma is admitted to the medical ICU for a severe asthma exacerbation. The critical care team believes she requires emergency intubation and mechanical ventilation. However, she refuses intubation stating, “I am sick of living with this disease and don’t want any more treatment.” Her attending physician determines that she has decision-making capacity (DMC) and that she understands that refusing intubation may result in her death.

Medical perspective

In general, obtaining informed consent is a legal and ethical imperative incumbent on physicians before they initiate therapies or perform procedures. The process of informed consent can only be undertaken with patients who have the cognitive abilities to comprehend, reflect and communicate effectively. Patients are determined to have DMC if they can:

• Communicate a specific decision
• Demonstrate an understanding of relevant clinical information
• Recognize the consequences of accepting or declining recommended therapy
• Elaborate on how a decision was reached. Nonverbal communication can be an acceptable means to meet these criteria.

A robust informed consent process includes educating a patient in understandable and transparent terms about the nature, purpose, risks, benefits and alternatives of a proposed treatment or intervention and the likely consequences of refusing the proposed intervention. This informed consent and educative process relies on the patient having adequate DMC for the specific decision under consideration.

Although not impossible in most critical care situations, a robust informed consent process is extremely challenging to put into operation due to the severity of the patient’s underlying illness or the effects of sedation, or both. Informed consent in an ICU must typically be obtained through disclosures and communication with surrogate decision-makers. If the patient has not previously appointed a surrogate decision-maker, the clinical team must identify the individual who would best reflect the patient’s goals of care, which is deemed substituted judgment. Other considerations related to a patient’s DMC include cognitive impairment (e.g., severe depression, dementia), emotional status (e.g., frustration with disease or treatment) and prior experiences.

It is advisable to obtain a second medical opinion when possible if there is any question or dispute about the patient’s DMC. This second opinion should come from a provider who has appropriate expertise but who is not a member of the care team that is recommending treatment. When the specialized skill of a mental health professional is needed or when there is significant disagreement or uncertainty regarding the patient’s DMC, it can help to have psychiatry, neuropsychology or specialized providers from other relevant disciplines conduct a DMC evaluation.

For the case described above, the clinician should try to persuade the patient within the time available to accept intubation and ventilation for a time-limited trial. Family members or loved ones might be helpful allies in this process of persuasion and negotiation.

If the above interventions are unsuccessful, the clinician is faced with a young patient with a controllable disease and a potentially reversible acute condition who is declining a lifesaving measure. Her physician and care team are faced with a high-stakes dilemma: Should they honor an informed refusal of an adult patient with DMC, the result of which could be the patient’s death?

Ethical perspective

A corollary to informed consent is the always-present possibility of informed refusal by patients. In fact, a kind of moral maxim or rule of thumb has emerged in this regard: informed adult patients with DMC have the right to refuse treatment, including lifesaving and life-sustaining treatments. One example is the right of an informed adult patient who is a Jehovah’s Witness to refuse blood products.

Ultimately, if efforts to persuade the patient to accept a time-limited trial of ventilator support are unsuccessful, the patient’s refusal of life-sustaining treatment should be honored.

Legal perspective

Adults with DMC are entitled to consent to or refuse medical care, including life-sustaining interventions. To the extent reasonably possible, it is important to ensure that such refusals are informed refusals. For instance, sometimes patients may clearly refuse an intervention but in actuality are refusing because of an effect that they believe is unavoidable (e.g., pain, suffering, discomfort) rather than because they are not interested in the intervention per se. In order to make a responsible decision in this realm, it is important for clinicians to understand the reason for a patient’s refusal.

When a legal challenge to DMC is presented, the law will often require proof of a DMC evaluation and, if DMC is absent, the extent and detail of the deficit. Judicial decisions are also subject to being informed by the patient’s values and the patient’s desired goals of care. Therefore, it is generally advisable that the patient’s DMC and information about the patient’s values and goals of care be documented in the patient’s medical record, including a detailed description of communications held with the patient regarding the proposed interventions, the patient’s goals, the patient’s understanding of the care plan and the proposed interventions. Further, medical record documentation should indicate all patient and clinician communications regarding refusal of medical interventions and the patient’s understanding of the consequences of refusal.

Proving DMC in a legal context can involve disagreement among the patient’s surrogate, family members and the clinical team. Thus, physicians should document any questions, concerns or comments in the medical record that were articulated by the patient during relevant discussions.

Again, as an adult with DMC, the patient generally has a legal right to refuse medical interventions, including intubation and other life-sustaining measures. The strategy of moving forward with an intervention a patient refuses in order to establish more evidence that a patient is well-informed is generally highly suspect. This can lead to a violation of patient rights and can result in a clinical course in which the patients’ ability to communicate future wishes about their care will be significantly compromised.

Mr. Smith is Director of Clinical Ethics at Cleveland Clinic. Dr. Mireles-Cabodevila is staff in the Respiratory Institute.