Death and other harmful side effects

Before I move on to my last book report I wanted to offer my views on the topic of death and how to manage what you can of it.

Usually at some point you will have the opportunity to fill out a living will and a durable power of attorney. The living will gives you the opportunity to leave some general instructions for how you want your health to be handled in the case that you become incapacitated.  However, these instructions may be unhelpfully vague (no extraordinary measures) or inappropriately restrictive (no feeding tube, no intubation, no CPR) in many situations that you cannot foresee in your current state of normal health.

With the durable power of attorney you entrust someone with the authority to make medical decisions on your behalf in the event that you become incapacitated and are incapable of making those decisions. This is far and away the more valuable of these documents because here you take the opportunity to clarify the vague and say specifically under what conditions potentially lifesaving measures become unacceptably extraordinary and therefore should be withheld or withdrawn.

The power of attorney goes into effect when you become intellectually impaired to the point that you can’t make or articulate rational decisions.  This incapacity can come in a variety of ways over a variable period of time. The most important question that needs to be asked if that happens is, “Is this incapacity permanent?” The answer to that question can be yes or no but at the outset the answer is usually we don’t know. If the answer to that question is no or we don’t know then life saving procedures should be implemented.

To be clear, there can be a common misconception that once implemented these interventions cannot be withdrawn and the case of Terry Schiavo comes to mind.  However, this case better illustrates what can happen when there is no clear power of attorney and there is a conflict between loved ones over what should be done. Someone with proper power of attorney can withdraw life support at any time.

The second question that needs to be asked and clearly answered is what is the nature of the permanent incapacity that would render lifesaving measures meaningless. 

People become physically incapacitated over time and that in fact is the trajectory of life beyond the age of 25. We soldier through that and carry on until at some point we may decide that the paralysis or the pain or the labor of breathing with recurrent set backs is not worth the effort so any life saving measure would not be worth the effort. However, as long as the individual is not mentally incapacitated this decision is up to the individual. Because they are mentally competent they have agency in this sort of decision. 

However, as is frequently the case, the individual permanently loses their mental capacity along with their physical capacity so the burden for making decisions about life saving measures falls on the person with power of attorney. This is the same decision as above but must be made before the fact and communicated clearly from the individual to the power of attorney designee.

These kinds of decisions are of course highly personal and everyone will have their own take on them but I am going to give you mine.

If I were to become mentally incapacitated I would want all measures implemented until it was established that this incapacity was permanent.  If it were deemed that I was to be permanently mentally incapacitated them I would consider any lifesaving measures extraordinary and I would only wish to have comfort measures.

What defines permanent mental incapacity? For me it would be my permanent inability to make medical decisions for myself. My belief is that I am my rational conscious self and once that no longer exists and cannot be reconstituted I no longer exist even if the body I inhabit continues with its vegetative and impaired cognitive function. 

Again, this incapacity can come in a variety of ways over a variable period of time. It can come suddenly as with a massive cerebral hemorrhage or gradually as with dementia.  In either case at some point the ability to rationally process information is lost and passed on to another and it is at that point that any even life prolonging measures (in addition to lifesaving measures) for me would be inappropriate because it is no longer my life you are prolonging.  I have ceased to exist.

With sudden and severe and permanent incapacity life prolonging measures are not an issue. However, patients with dementia can have other comorbidities such as high blood pressure, diabetes, or high cholesterol.  Treatment of these conditions are life prolonging and for me I would want my power of attorney to withhold these treatments. Vaccinations would be appropriate for their public health benefit, especially if I were institutionalized. Treatment of underlying conditions if that treatment provided comfort (for example, oxygen if I were short of breath or diuretics if I had edema) would be for me appropriate as well. 

This sort of gradual decline can and often does go on for years. Quite often it is more burdensome for the caregiver than the patient. If I were the patient my existence need not be uncomfortable but it need not be prolonged.

Quite frankly, I think this is a relatively radical way to deal with this problem. Therefore it is clearly not for everyone or even anyone but me.  Perhaps that is the most important point.  These are questions are highly personal and you really need to think about them and clearly communicate them with the person who is going to be your power of attorney.  As important as it is to have your wishes carried out the person who is entrusted with the power of attorney carries the burden of responsibility for doing what you think would be best.  If at any time after the fact they think they have had to guess and guessed wrong that can be a burden of guilt they may carry for the rest of their lives.