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what conditions potentially lifesaving measures become unacceptably extraordinary and therefore should be withheld or withdrawn.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To be clear, there can be a common misconception that once implemented these interventions cannot be withdrawn and the case of Terry Schiavo comes to mind.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.

Thinking Immortal but Being Mortal

Being Mortal by Atul Gawande is an important book for those who have thought about the death of themselves or a loved one; it is an essential book for those who never considered the question.

Although not specifically delineated that way the book can be thought of as divided into three parts.

Part 1: “Life is a non-winning proposition.” Russell Berg

The first part deals with how we die. I tell patients that we peak between 20 and 25 and then it is a down hill course to oblivion*. Gawande discusses how this takes place and uses the aging of teeth as an example.  Even this most inert part of our body is not immune to the ravages of time. He discusses various theories as to why this happens but favors the notion that we are complex self-correcting machines where eventually the mistakes over take the corrections and we end with overall system failure.

For all of previous human history that end was usually fairly sudden and usually the result of an infection.  Pneumonia was referred to as the old person’s friend. The downhill course to oblivion ends at a cliff.

Now, for the most part, the downhill ride is punctuated by a series of events that permanently reduce our capacities but, because of modern medicine, it becomes a drawn out affair. We aren’t dead but we must learn to live with what we have lost.

Part 2: Don’t live free and don’t die

Gawande goes on to discuss how society has had to come to grips with this extended twilight world that the moderately to severely debilitated aged live in.  He traces the history of the development of the nursing home industry as a well-meaning solution for dealing with people who are unable to care for themselves. He notes that the quality of care is orders of magnitude better than the poor houses they replaced but their principle problem is that there, patients lose their autonomy.  He notes that like the military and prisons nursing homes are the institution in which the individual’s schedule – when you get up, when you eat, when you wash, when you socialize - is completely directed by someone else. This loss of autonomy results in a loss of a sense of self.

There are movements afoot that Gawande talks about to give more autonomy to the client.  The assisted living arrangement was started to give individuals the opportunity to decide when they want to get up, eat, socialize, etc. However, many of the questions revolving around autonomy raise questions about safety.  Can an individual live alone, go out by themselves, without a walker or cane, drive? The important point he addresses here is the interpersonal nature of this problem. This is often a point of conflict between the elderly individual and their loved ones.  While these sorts of issues must be dealt with on a case-by-case basis, being able to frame the problem in this way makes it easier for both sides to come up with solutions to their differences.

Part 3: What are your hopes and what are your fears

In the last part of Being Mortal the author talks about what happens when that decades-long downhill course turns into a rapid rush punctuated by modern medicines valiant but ultimately futile attempts to prevent the inevitable. He deals with this issue objectively quoting authorities and citing statistics; professionally how he dealt, both well and badly, with the problem with patients: and personally in dealing with the prolonged illness and death of his father. 

He feels the medical profession is understandably overly directed toward cure and the patient, equally understandably, is overly optimistic for a cure.  The result can be a futile pursuit of doing too much for too long to the detriment of the patient.

He favors taking a step back, realistically assessing a prognosis, and then trying to optimize everyday that the individual has left to them.  Once an estimate of a prognosis has been determined the first and foremost question, which is straight out of hospice care, is:

What are your hopes and what are your fears; what are you willing to do to realize your hopes and avoid your fears? *

The object is to think as clearly as possible about how to optimize the measurably finite time you have left and make each day a blessing. Gawande’s personal and professional recollections give tangible examples as to how this can work out in practice to the benefit of the patient, their family, and even the provider. 

Being Mortal gives the reader an opportunity to think through these issues before they come to the fore so that the individual can be better prepared when the inevitable comes.

It has not only been beneficial for patients but has been widely read in the medical community resulting, at least in the circles I run in, with a more ready embrace of palliative and hospice care.

*I go on to tell patients that there are 3 things and only 3 things you can do to keep the slope as flat as possible.

1.     Don’t put bad things into your body. (Heroin, nicotine, high fructose corn syrup, etc.)

2.     Put good things into your body. (Fruits and vegetables)

3.     Exercise.

** “What are your hopes and what are your fears; what are you willing to do to realize your hopes and avoid your fears? The object is to think as clearly as possible about how to optimize the measurably finite time you have left and make each day a blessing.”

This should probably be the guiding principle of our entire finite life. But for most of us it isn’t and that is probably because while our life is, of course, finite it is not measurably so in any meaningful way for us. We are all going to live forever until we’re not.