The biggest difficulty in these situations is that the mechanical ventilator prevents the patient from talking. Often, the patient cannot write either, as the lack of blood oxygen quickly causes other muscles to deteriorate.

It is very difficult too, to understand what exactly someone in this circumstance means when they attempt to communicate their wishes. The treatment options, and potential outcomes are extremely complex to explain, to comprehend, and then try and communicate one's decisions about them while not being able to talk or write.

For instance, if the patient was brought to the emergency room without a surrogate decision maker, and was presenting as awake and alert and complaining of shortness of breath, and the evaluation reveals pneumonia is present (as was the diagnosis here), and the potential risks and benefits of mechanical ventilation were explained to him, and he chose to change his mind and begin mechanical ventilation, then of course the right decision was made, because as long as the patient themselves have the ability to make the decision, the doctors must honor the patient's decision.

However, in another similar scenario, where the patient is brought on their own without a surrogate decision maker to the emergency room and is presents confused and barely conscious, and has already deteriorated to the point where he can no longer communicate with medical staff at all, the decision to begin/not begin mechanical ventilation is much more difficult and complex, living will or not. Because pneumonia is potentially a reversible condition, and mechanical ventilation can be used to keep the patient alive until the treatments begin to work and the patient heal, it is a very tough call, unless the patient is known to the medical staff and they realize that treatment of even the pneumonia would be futile because of the "end stage" scenario.

It is much more difficult to make the decision not to intubate and begin mechanical ventilation in the latter case, ie when it is known the patient is already in end stage emphysema, and the surrogate decision maker suddenly shows up at the emergency room and insists upon both the pneumonia being aggressively treated (which isn't an unreasonable request in most cases, even end stage emphysema) AND the patient being put on mechanical ventilation in order to survive long enough to receive treatment for the pneumonia, which may or may not work.

Those are the saddest cases, as Sorcha points out above. And sadly, it looks to me like it is possible that is the scenario unfolding with Jerry's brother in law. Of course we always "hope for the best". But sometimes, the best is never having been put on the ventilator to begin with. If he is being moved to the rehab hospital with pneumonia still present and still on the ventilator, it could well be the decision about removing the ventilator could come very soon, ie if the pneumonia isn't reversed. Things can quickly and/or suddenly reach the point where it is clear the treatments are not useful or of benefit to the patient in any way.

How does one determine that? Well, the way our mother's pulmonary specialist explained it to us is, treatment may be "futile" when it no longer fulfills any of the goals of medicine. In general, these goals are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status. In some cases, the patient is clearly unable to voice a wish to have treatment withheld or withdrawn (ie can't talk on the ventilator, and too weak and/or confused to communicate effectively in any reasonable way). If there is no written advanced care directive, the doctors must rely upon their own judgment, in consultation with surrogate decision makers familiar with the wishes/values of the patient.

Some patients do change their minds about end-of-life decisions when they actually face them, which may be the case with Jerry's brother in law, though it is really hard to tell when the person can no longer speak for themselves. That is why it is important, especially if you haven't drawn up a living will, to discuss the subject with multiple family members, but much more importantly, with your personal physician who will be involved in the final decisions about withholding or withdrawing treatment. Sometimes the patient is awake, alert, and conversant, but their decisions seem questionable or irrational. Yet, it can still be very difficult to distinguish an irrational decision from simple disagreement. If the surrogate decision makers (including the doctor and family here) feel strongly that a certain course of action is "what's best" for the patient, it can seem irrational for the patient to disagree. In these situations, it is critical to talk with the patient and find out why they disagree, if possible.

The word "competent" is really loaded, both emotionally and legally. That is why nowadays, good medical professionals try and determine if a patient has "decision making capacity" rather than whether they are "legally competent". With my mother, we actually executed a durable power of attorney for health care last summer, when it became apparent that her deteriorating condition was robbing her of consistent and sound decision making capacity. She was sometimes alert, sometimes not. She could talk, but often refused to communicate. She suffered from depression. She would change her mind and decisions from day to day. On the other hand, a person can be incompetent about some things, like the ability to manage their financial affairs, yet still be able to make sound medical decisions about the course of their medical treatment, including refusing treatment which my mother did on a number of occassions, especially as she became more and more ill.

In general, the capacity to make treatment decisions, including the withholding or withdrawl of treatment, is considered intact if the patient:

1. Understands the clinical information presented
2. Appreciates his/her situation, including consequences with treatment refusal
3. Is able to display reason in deliberating about their choices
4. Is able to clearly communicate their choice.

If the patient does not meet any one of these criteria, then their decision to accept or refuse treatment should be questioned, and handled in much the same way as discussed for the clearly incompetent patient.