End-of-life issues - advance directives and autonomy

Advance directives allow patients to establish beforehand (usually by means of a written document), what kinds of medical treatment they would want and not want, should they fall victim to a serious, life-threatening illness that leaves them unable to express their wishes. Advance directives can be either a statement of very general desires (e.g., “I do not want my life prolonged by any artificial mechanical means”), or a list of specific wishes (e.g., “I do not want to be attached to a mechanical ventilator”).

Advance directives and autonomy

By allowing patients to make such choices ahead of time, advance directives potentially can spare them from being subjected to treatments that they would consider demeaning, undignified, painful or otherwise undesirable, should they become incapacitated at a later date. Thus, well-constructed advance directives should always operate in the direction of preserving individual autonomy, and there should be little ethical argument against them.

Accordingly, the dispute with advance directives is not so much ethical, but practical – what have advance directives actually accomplished, and what can they realistically be expected to accomplish? For, while advance directives sound like a very good idea, and while they indeed can be very helpful in some circumstances, they have proven to be much less so than one might think.

Advance directives are supposed to work by providing guidance to physicians who, in their fiduciary capacity, are charged with acting in their patients’ best interests, even if the patient can no longer express a preference. Unfortunately, however, advance directives only go part way in determining what actions the physician should take to best honor the wishes of the incapacitated patient at the time they are incapacitated. The problems are twofold; advance directives express imperfect knowledge, and they are imperfectly expressed.

It is virtually impossible for a healthy, robust individual to know precisely how he or she will really feel several years from now when illness strikes, and it becomes time to actually exercise an advance directive. Every doctor who cares for critically ill patients has seen more than one who, despite advance directives to the contrary, unhesitatingly choose to be attached to a ventilator (for instance) when the time comes, rather than face certain imminent death. Experienced doctors know that advance directives do not always indicate what a patient will actually choose when the time of choice is upon them. They also know that, while conscious patients have the opportunity to repeal their advance directives, unconscious patients don’t. So in executing an advance directive in an incapacitated patient, the conscientious physician will also take into account many other factors – her personal knowledge of the patient, the opinions of the family as to what the patient would want done, and the chances of long-term recovery if the therapy being considered is used. Let us illustrate with a case study.

Bruno's advance directive

Bruno, a previously healthy man of 68, has just suffered a stroke. He becomes comatose, and two hours later he develops respiratory distress. Dr. Smith, Bruno’s neurologist, expects his respiratory condition to improve over time. But right now Bruno needs to be attached to a ventilator or he will die within hours. The problem is, Bruno has signed an advance directive that appears to prohibit ventilators under most circumstances.

Dr. Smith is not sure what to do. How much weight should she give to Bruno’s advance directive? If she withholds the ventilator, Bruno will die. If she puts Bruno on the ventilator, chances are he will recover, but with at least some permanent neurological deficit. Which would Bruno choose if he were able to express his choice now?

Dr. Smith talks to Bruno’s family about the situation. Bruno’s daughter says the advance directive speaks for itself and should be honored, but his son expresses doubt as to whether this was precisely the kind of circumstance Bruno meant when he indicated he didn’t want the ventilator. Bruno’s wife is simply distraught, and while she cannot offer advice about the advance directive, she obviously is not ready for Bruno to die.

Then, of course, there’s the interpretation of the language in Bruno’s advance directive. Bruno’s daughter had downloaded it from the Internet for him, and it’s pretty boilerplate. In fact, Dr. Smith has seen this language before; she doesn’t believe that Bruno changed anything in it – apparently he just signed it. For Dr. Smith, this calls into question how much Bruno had even thought about it before signing; maybe he was just trying to please his daughter. In any case, this particular directive is distressingly vague about its prohibitions. Regarding the ventilator specifically, it appears to prohibit its use “unless there is a reasonable expectation of a meaningful recovery.”

Dr. Smith tries to evaluate the wishes expressed in Bruno’s directive in light of his current situation. With aggressive therapy she expects that Bruno has perhaps a 60% chance of surviving this hospitalization. Is that a “reasonable expectation?” If Bruno does survive, he may be permanently paralyzed and unable to talk. Is that a “meaningful recovery?” She has seen many patients with devastating strokes eventually achieve a level of satisfactory, often happy, recovery. Yet, she knows, few of them would have predicted ahead of time that they’d be willing to live with such a condition. The definition of a “meaningful recovery” depends heavily upon whether one is a robust young man thinking about a stroke in the abstract, or an elderly man actually living it and whose only other option is death.

Bruno’s three family members intently study Dr. Smith’s face, awaiting her recommendation – the wife pleadingly; the son expectantly; and the daughter challengingly. What will Dr. Smith do?

Before Dr. Smith tells us, let’s examine some of the other considerations she might have to entertain.

Next: Advance directives - cost and the physician advocate

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