What Should Families Consider when Deciding for an Incompetent Patient?

There are actually two audiences to the question posed and it is necessary to first lay the context of any response to the question.

The first audience would be the attending physicians of incompetent patients such as the lady in our case. Half a century ago, attending physicians were given much latitude to decide on what was to be done when faced with such a scenario. In the past, there was great emphasis on the preservation of life at all costs, perhaps because there was a presumption by doctors that human beings in general, would choose to live regardless of their physical state. Certainly, it was not the norm then for a patient to decide on where, when and how one should expire and much was left to the illness to take its normal course. Given that there not many life-extending technologies at that time, the normal deterioration following many diseases often became the default decision-maker for incompetent patients.

With the advances in technology and pharmacology that provide the ability to prolong the beating of the heart and breathing of the lungs, decision-making for the incompetent patient has become complex. The last 50 years have also seen a rise in the pre-eminence of the principle of patient autonomy. Thus while the physician must continue to weigh the benefits against the harms of each planned procedure to be done on the patient as he has always done in the past, he must also factor in the personal desires of the patient. In fact, a significant paradigm shift has been for physicians to be open to the patient’s perspective of what constitutes a “benefit” or “harm” and accept, too, that the patient’s definition may be dramatically different from the physician’s.

In summary, the principles of beneficence, nonmaleficence, autonomy and respect for persons are the guides to help the physician clarify the treatment direction for incompetent patient.

Oftentimes, when these principles are explained well to the families in this day and age, the input is usually received well and the physician finds it easy enough to guide the family to a good decision that will be of greatest benefit to the patient in all aspects. The challenge however arises when the second audience of this question — which is the family — has a difficult time appreciating the worth of such principles and decide for the patient based on grounds that may be unacceptable to the attending physician. Some examples of “unacceptable” grounds would be selfish interest, vengeance, apathy, or stubbornness that cannot be reasoned with. It is these latter scenarios which actually constitute the greater number of modern-day ethical dilemmas for medical personnel. An opinion on how to handle this is offered towards the end of this article. But when both the attending physician and family are in agreement, some practical questions need to be asked.

The simplest way to know the patient’s wishes is through explicit statements often documented in an advance directive. When this is not present as in this case, an attempt is made to deduce what those wishes may be. What was her personality like? What were her reactions in situations that approximate her current condition? What was her opinion on matters such as death and dying, pain and suffering?

The patient’s statements made on two occasion need to be clarified so that there is no danger of a wrong interpretation. What was the context of her statement “I do not want to die”? While it may seem to be simple enough to mean that she wants to live but only for as long as it will not cost her suffering (as seen by her retraction with the difficulty in the central venous catheter insertion), it needs to be clarified that such a conclusion is a valid one. Could there be any other explanation for the inconsistency in her remarks?

Why was she amenable to the previous tracheostomy? What was she told about the procedure? For example, was she told it was only for a temporary period and for a treatable condition? Would...