Patient Autonomy Defined

The essence of respect for patient autonomy and self-determination is that an appropriately informed adult patient, with adequate decision-making capacity, has the right to refuse any medical therapy, including life-sustaining ones. Not only has a broad ethical consensus emerged to support this principle, but also both statutory law and important judicial decisions in the United States have established this as a legal right of capable adult patients. Under this principle, absent countervailing obligations, the physician should respect a capable and informed patient’s decisions to forgo life-sustaining medical care. However, although autonomy gives patients the right to refuse treatment, it does not give them or their surrogates the unqualified right to demand and receive any desired intervention. Rather, patients, or those making decisions on their behalf, are specifically entitled to accept or forgo medical interventions that fall within the standard of medical care.

Medical Decision Making for the Patient Lacking Capacity

More often than not, patients in the ICU lack sufficient capacity to provide informed consent or refusal of a recommended therapy (Box 102.1). When patients unexpectedly experience acute life-threatening illness, it is permissible to assume their consent in order to preserve life. However, if patients lack adequate decision-making capacity and are unable to speak for themselves, their right to making decisions passes to a surrogate decision maker or health care proxy to make decisions on their behalf. Ideally this should be someone whom the patient identified as her or his preferred surrogate, such as the holder of a durable power of attorney. Patients often select someone who is close to the patient and who has knowledge of the patient’s values, life goals, and preferences about the use of life-sustaining interventions.

Explicit to the surrogate decision-making process is the initial expectation that medical decisions will be made on the basis of what patients would want if they could speak for themselves (called the “substituted judgment” standard). In this regard, an advance directive may be helpful. Unfortunately, a majority of patients have not completed any advance care planning or had any discussions about these issues with those who are close to them.

In the absence of an advance directive (or clear direction from such a document) or knowledge of specific patient preferences, physicians and surrogates should work together to make decisions that are informed by both the patient’s physiologic and clinical conditions as well as the values, goals, and life of the patient. In this process the surrogates provide knowledge of the patient’s goals and life values (substituted interest), and the clinicians present information on the risks and benefits of specific interventions and the expectations for recovery from critical illness. Ultimately, in an iterative and collaborative way, a decision based on the “best interests” of the patient is made about a plan of care in which the “pros” of the decision outweigh the “cons.”

Medical Decision Making When a Surrogate Cannot Be Identified

For as many as 5% of patients in the ICU, an appropriate surrogate cannot be found or identified. There are currently no nationally recognized guidelines for managing these situations. Approaches therefore vary by institution, with decision making delegated to the bedside physicians or the institution’s chief medical officer, often accompanied by the requirement of a review of the case by the hospital’s ethics committee.

Medical Futility

The potential conflict between the rights of patients and the obligations of physicians has played out in the long and ongoing debate over the use of futility as a basis for decision making. Some distinguish between physiologic futility and medical futility. If the intervention is determined to be physiologically futile (i.e., it cannot achieve its stated goal), then it can be withheld or withdrawn without the consent or approval of the patient or the surrogate (as it would be medically inappropriate to give a patient a useless intervention).

When invoking medical futility, physicians generally refer to a perceived lack of meaningful recovery (usually based on their own opinion of the patient’s apparent low quality of life), a low chance of success, or both. Critics have argued that the term medical futility remains ambiguous, too value laden, and too difficult to apply consistently or fairly. Among a slew of ambiguities, it is impossible to exclude the influence of the clinician’s personal values, undermining medical futility as ethically sound.

Overview

Most of these deaths in the ICU are preceded by a decision to change goals of care from curative to comfort-only efforts. This makes it an imperative that policies and procedures be in place, based on the core principles and practices of palliative care, to provide high-quality end-of-life care to ICU patients and their families.

Trust Earned by Delivering Compassionate, High-Quality Care

Clinicians are susceptible to the assumption that by virtue of their position they are entitled to the trust of patients and their families. It is vital to guard against this attitude and instead have the perspective that for each new patient trust must be earned. This trust is fostered by compassionately delivering the best care possible to the patient and then by providing opportunities for the family to learn of the high-quality care that is being provided. These include liberal visiting hours that allow the family to be present for extended periods of time and thus see the full range of care that is being provided; communicating consistently (ideally daily) with the family about the care being provided; and including the family in the patient rounds of the ICU team (see Chapter 106). Lapses in care may occur and can severely undermine the trust that the patient or family has for the health care providers. When medical errors occur, it is essential to regain or maintain the trust of the patient or family by responding in a proactive, transparent, and truthful way (Chapter 107).

Trust Enabled by Consistently Effective Communication

For communication to be effective in the ICU, it must be understandable and welcoming of questions, timely, truthful, respectful and culturally informed. It also entails empathic listening with a genuine desire to know and understand the patient and family.