Courteous and ethical conduct is imperative in all of our interactions with patients and families. However, it is particularly sensitive in critically ill patients, many of whom are at "death's door." One must always remember that our patients are someone's mother, father, son, daughter, brother or sister. Treat them (both the patients and their families) as you would want to be treated in such a terrible circumstance. There is no such thing as too much compassion and as a general rule, there is evidence to suggest that patients and their families want as much information as possible, in plain language that they can understand. Ask them to repeat their understanding back to you, to make sure you've adequately conveyed information.

An underlying tenet of American Medicine is that all patients have the right to "self-determination;" to make their own decisions regarding care. It is always the physician's obligation to share information with a competent patient first, even if family members are afraid it will upset them. Often critically ill patients are encephalopathic and unable to participate in decision-making. We then look to legal documents that the patient may have created (see below) to assign a loved one to make decisions. In the absence of such a directive, we look to the spouse, mother, father, children, siblings (in that order) for guidance. The goal is not to determine what they want (they want their loved one back in good health). The goal is to determine based upon the medical condition (of the patient) and our estimates of prognosis, would he or she want X, Y or Z therapies. To make these complex decisions, families frequently need to know the likelihood of full recovery and the likely quality of life if the patient survives. In the absence of advance directives, loved ones may be able to help give insight into what the patient would want, with the caveat that they (the family members) are frequently suffering as well and may not be ready to accept the illness and death of the patient (even if they know that this is what he/she would want). As conditions change, so too may the family's interpretation of the patient's wishes. Open and frequent communication is usually necessary to assure that they are guided well and humanely.

Two relatively common situations in which patient self-determination must be observed are informed consent for invasive medical procedures and end-of-life decision-making.

1. Informed Consent. In general, unless a life-threatening emergency requires immediate action preventing sufficient time to obtain consent (from the patient, or surrogates if the patient is not competent), physicians should obtain permission before performing invasive medical procedures. This process is called informed consent; it involves explaining the procedure, its risks, benefits and alternatives so that the patient or surrogate can make an "informed decision" about whether to undergo the procedure. Recent data have demonstrated that physicians are not very good about obtaining consent for non-surgical procedures. In general, obtaining informed consent, documenting it in the form of a signed permission and then documenting well the actual procedure, are duties that protect patients' rights and physicians from unnecessary litigation (should a procedure encounter a major complication). In many states, the legal standard of consent is "what any reasonable person would want to know" before accepting (or not accepting) a procedure. A complete description of common ICU procedures can be found at:

http://www.thoracic.org/assemblies/cc/ccprimer/mainframe2.html.

2. End-of-life decision-making. Life sustaining interventions like CPR and mechanical ventilation, unlike other medical procedures, are provided as a default if a patient becomes unable to communicate his or her wishes. Often when patients become very ill and unable to communicate, physicians are left with patients' family members to determine whether the patient would want to be kept alive for a prolonged period using these (and other) "life-sustaining modalities." Many states, including Connecticut, have enacted legislation whereby patients can write down their wishes regarding such care in an "advance directive" called a living will. In this document they can also choose a family member or loved one to make decisions on their behalf. In Connecticut, living wills apply ONLY when the patient is unable to communicate his/her wishes AND is in terminal condition. Accordingly, physicians should seek a patient's wishes regarding CPR and mechanical ventilation BEFORE they become unstable and unable to communicate. But even when the patient is unstable, it is very rare that even a seasoned clinician can look at a patient and determine with a >95% certainty that a patient is "terminal." So most often a "trial of therapy" ensues to determine if a patient's condition is reversible. Unless they say no CPR or mechanical ventilation under any circumstances, living wills should not preclude these therapies. Another major limitation of living wills is that even as a trial of therapy unfolds, it is often very difficult to say with a very high degree of certainty that a patient is terminal ? that continued care would be futile. Inter-observer variability in this determination may render it excessively arbitrary. Accordingly, frequent meetings with family members/surrogate decision makers to discuss the progress of care, to explore what they think the patient would want in these circumstances and how to proceed are required. You will find that some families want formal meetings infrequently, while others want information daily or even more often.

Detailed descriptions of end-of-life decision-making and advance directives can also be found at: http://www.thoracic.org/assemblies/cc/ccprimer/mainframe2.html.