As clinicians, our goals for patients are to save lives, restore health to a desirable existence, alleviate suffering, and provide the dying with a peaceful and dignified death.

The transition of the goal from curative treatment to comfort care is one of the most challenging aspects of critical care. People want to live; this is most exemplified by studies showing that patients would undergo mechanical ventilation for a 1% chance of ICU survival,8 and 70% of ICU survivors would undergo intensive care again for a chance to live one more month.9

Palliative care may even be provided in conjunction with lifesaving treatments in patients at risk for death. The goals of palliative care are control of symptoms such as pain, dyspnea, and discomfort; effective communication about appropriate goals of treatment and concordance of treatment with patient preferences; and enhancing quality of life. Adopting a palliative care approach and involving a palliative care service may be of great benefit in managing cardiac patients at the end of life.

Effective communication is the means to achieving patient preferences in end-of-life care. The landmark SUPPORT study revealed that the wishes of dying patients were often unexplored by physicians, and those patients received potentially undesired treatments at the end of life.10 Clinicians must also recognize that their own wishes may not coincide with those of their patients; a large multicenter study of European ICUs found that when asked about preferences at the end of life, physicians and nurses were less likely to desire life support than patients and families.11 Decision making that is shared between the patient/family and the clinicians is the model process supported by American and European critical care societies.12,13 The evolution of critical care decision-making from a paternalistic model to the current standard of shared decision-making is predicated on respect for patient autonomy and values. In the critical care unit, up to 95% of patients may be unable to participate in decisions owing to the severe illness, need for life support, and sedative medications.12 Therefore, the legally recognized appropriate surrogate often assumes the decision-making role to represent the patient’s values and preferences. The family-centered approach respects the patient’s values, and also acknowledges that many patients would want their family members to participate in decision making.

Patient autonomy is a foundation ethical principle for patient care. U.S. Supreme Court cases such as the Quinlan and Cruzan cases established that patients have a right to determine which medical treatments to accept or refuse, even when refusal leads to death.14 Often in the critical care unit, the patient is incapable of participating in the decision making. However, the patient may have left guidance in the form of an advance directive, such as a proxy, living will, or oral statements articulating
his or her wishes concerning life support at the end of life. The patient may have assigned a health care proxy to make decisions if he or she becomes unable to do so. If no proxy has been assigned, the surrogate decision maker is chosen from the patient’s close relatives or friends based on priority. In this way, the patient’s values and preferences can still guide the decision-making process when decision-making capacity is lost.

The principle of beneficence maintains that physicians will work to provide the best course of treatment for the patient. Physicians see the goal of preserving life, but beneficence also means the support of the patient’s informed decision even when refusal of therapy may lead to death. Nonmaleficence means not inflicting harm. This principle instructs the physician to weigh potential harms of treatments against potential benefits and not to provide interventions that will not benefit the patient.

Conflict may arise when the patient, family, and clinician disagree about the appropriateness of an intervention. Nonabandonment is an important principle that obliges the physician to help the family understand the situation and support the family’s decision. Physicians are not obligated to go against their own beliefs and therefore, if the physician disagrees with the patient and family decision, the principle of nonabandonment requires the physician to try to transfer care to another physician who will pursue the desired plan of care. The hospital administration or ethics committee may be involved to assist in resolution of these complicated situations.

As stated above, patient autonomy is the strongest ethical principle driving medical decision-making, so that patients have the right to make decisions for themselves, and when conscious capacity is lost, this right remains protected. Advance directives, such as the health care proxy and living will, provide for decision making based on patient values and preferences when the patient loses decision-making capacity. Respect for patient autonomy underlies the federal Patient Self-Determination Act of 1990 that requires hospital personnel to ask patients whether they have an advance directive and inform patients of their right to accept or refuse medical treatments and to create an advance directive.15 A do not resuscitate (DNR) order is one kind of advance directive that addresses interventions in the setting of a cardiopulmonary arrest. A DNR order means that if the patient suffers a cardiopulmonary arrest, the interventions of intubation, CPR, and advanced cardiovascular life support will be withheld. A DNR order is often issued for patients at the end of life and in patients with chronic or terminal illnesses. In some patients with DNR orders, the patient may be expected to benefit from and will receive intensive care interventions, but CPR will be withheld in the event of cardiac arrest. A DNR order is often a first step in the family’s decision-making process.

The means to decision making is effective communication and understanding. The contributions of the entire team are often invaluable. Most of ICU nurses do want to be involved in end-of-life decision-making; the bedside nurse usually has important insight into the patient’s condition and the family understands and desires. It should not be assumed that families grasp the severity of their relative’s illness or the ramifications of life support measures. Family understanding of critical illness and intensive care treatments has been shown to be inadequate.16 Among family members of ICU patients, only 50% could identify a single failing organ or any treatment.17 Knowledge about cardiopulmonary resuscitation is especially poor, with a prevalent unrealistic expectation of survival among patients with serious medical illness and their families.18 A prospective study in an urban American ICU found that only half of the surrogates understood basic facets of their family member’s care, such as whether the patient was on a respirator or the resuscitation status.16 Accordingly, assessing family members’ understanding of the patient condition is vital and will be part of the communication strategy in a family meeting.