Thoughts on a Life's End
Yesterday, however, Jerri at the always-thoughful Sue Bob's Diary, e-mailed me with the following comment and question:
I notice that you have stayed out of the Terri Schiavo issue. I figure that you have a good reason for that. But, I was wondering if you'd answer a question.
... I have a real problem with the idea of removing someone's feeding tube unless their systems are shutting down and they can no longer absorb nutrients ... I just heard a Medical Director of a nursing home on the radio talking about Alzheimer's patients losing their appetite and having feeding tubes inserted. The MD thinks removing the tube in such circumstances is justified. Perhaps it is if their systems are shutting down and they no longer want to eat...
I saw your post about extraordinary measures and agreed with it. But, as a Christian doctor, do you see acceptable parameters in all this?
Jerri has a habit of prodding me to write about things which I would prefer not to tackle. But not infrequently, such encouragement and the discipline of writing proves helpful in clarifying my own muddled thoughts about a difficult subject. So I'll give it my best shot.
My comments about Terri Schiavo herself will be very limited, based on what limited knowledge I have. As best I can ascertain, she appears to be in a persistent vegetative state, and it seems likely that her chances for any sort of cognitive recovery are virtually nil. On matters regarding her husband's and family's decisions, the courts, governor and congress, I won't comment for lack of sufficient information. Nevertheless, the issue of end-of-life decisions is far broader, and in my mind far more complex, then the current firestorm could ever resolve. My ambivalence on how best to handle such a situation is my strongest reason for refraining from posting on her case so far.
The challenge of end-of-life decisions is a byproduct of our successes and breakthroughs in preserving and sustaining life. They are the unintended consequence of technological advancement. 50 years ago, it is likely that a young woman with cardiac arrest would have died before she received emergency care, or if not, would likely have passed away shortly thereafter from complications, such as sepsis, embolus, or pneumonia. The advancements in acute emergency medical care and resuscitation have saved many lives, but some of these lives end up so severely impaired that the success proves a pyrrhic victory.
The moral and ethical dilemmas which have arisen from our dramatic improvements in emergency care go straight to the heart of what it means to be human, to be alive, to have meaning and quality in life. If one must use a pigeonhole, I would certainly be classified as a pro-life proponent. Life is perhaps the most precious gift given by our Creator, and cannot simply be measured by a superficial standard such as health, mobility, or even lucid mentation. Yet life is a gift, and not a god. As I have written in Dancing with Death, dying itself is also an integral part of life, and irrational and misguided attempts to prolong it can be very destructive, demeaning, and degrading to its dignity.
It seems to me that there is considerable confusion in our contemporary discussion of end-of-life decisions, engendered by such unfortunate and inexact terms as "pulling the plug." And each situation must be judged by its own merits, taking into account the overall prognosis for life, patient and family wishes, and the potential for the patient to return to some measure of meaningful relationship with family and others. Here are the core principles I fall back on when considering these difficult decisions. They are by nature generalizations, and exceptions will arise (especially in the very elderly), but they are useful guideposts nevertheless:
• Life is more than any of its components.
We are more than our health, more than our bodies or mind. We are a composite of these things, and more: comprised of soul and spirit, defined as much by our relationships as by our physical or mental capabilities. Our lives do not become meaningless because of physical illness or disability, nor because of mental incapacitation -- hereditary or acquired. Our relationships with other humans and with God define us -- and not only our ability to relate to others (lost in persistent vegetative state and severe retardation or dementia), but also the relationship of others to us. This why, even though severely mentally impaired and unable to relate to others, an individual still has great value: they are of great value to God, and to others who love and care for them. When we narrow the meaning of life down to physical health or mental capacity, and deem it unworthy based on such factors alone, we are destroying that which is precious to others.
• When the individual's outlook from a life-threatening acute or chronic illness is optimistic, or at least reasonably uncertain, we should choose to preserve life.
Consider two scenarios: a previously healthy man arrives at the emergency department with cardiac arrest of undetermined length. He is resuscitated, requiring placement on a ventilator. His cerebral function is impaired, perhaps comatose, but it is early in the illness, and his expectancy of return to a normal life is potentially optimistic. Ventilatory or other artificial life support in this situation, where the prognosis of the underlying condition and the chances for optimistic recovery are good, or uncertain, should be aggressively pursued.
This is an entirely different situation from stopping ventilatory support for patient who requires it to live, and for whom clinical evidence, such as length of time in a coma, or absence of brain activity on EEG, indicate little or no chance for functional recovery. In the first case, the cessation of life support will terminate the patient who may well have a very good outcome and lead a normal or nearly normal life; in the second, the patient's chances of recovering spontaneous breathing and cerebral function are nil, and therefore cessation of ventilatory support allows the underlying disease process to take its natural course. A similar scenario might be found in the patient who is dying of cancer and requiring ventilatory support, where the life support has no hope of changing the outcome -- death -- but only of changing its timing and prolonging its suffering. The outlook spoken of here involves both mental, relational, and physical, although mental and relation have a much higher priority. Few would argue that Christopher Reeves should have had his life support terminated, despite the fact that he required a ventilator to live, as his mental facilities and ability to have relationships was intact.
• Those who have lost all functioning mental, social, and relational abilities, but whose underlying condition is not a threat to life (e.g., persistent vegetative state), should be sustained with basic care and life support.
The persistent vegetative state is very different from that in which the underlying disease is terminal or life-threatening, and poses a very difficult situation. The patient is physiologically alive, requiring no assisted ventilation or cardiac or vascular support to continue living -- in other words, their underlying disease will not kill them. In the early days and weeks of such as state, it is often very difficult to determine what the long-term recovery capability of the brain and nervous system may be. Healing of central and peripheral nervous system damage is often agonizingly slow, and may take a year or more to determine their final steady state. When it becomes clear that brain or central nervous system function has reached its maximum recovery, and it is at that time evident that no function associated with higher cortical function -- such as speech, comprehension, purposeful movement, or understanding of communication -- is possible, then, although the individual is technically alive, they no longer possess the capabilities of a normal functioning human being in society and relationships.
It is at this point that wisdom faces its greatest challenge. The question of whether to cease the most fundamental of life support measures -- food and water -- is a question which I myself have not completely resolved to my satisfaction, although I lean strongly toward basic life support -- food, water, basic care.
The problem I have with stopping food and water is the great risk of crossing a very dangerous boundary. If we define life only by our mental state, rather than as a union of mental, physical, and the relationships of ourselves to other and of others to us, it seems dangerously easy to move this boundary based on a subjective judgment about which specific mental capabilities constitute a meaningful life. An otherwise healthy patient with severe Alzheimer's disease most certainly has very little mental capabilities from a social interaction standpoint. Shall we deprive food and water from such patients? How about the severely mentally impaired who are younger, or unable to speak or hear? Certainly, none of us would choose a life with such severe quality constraints, given the choice. But forcing death when the underlying condition is not fatal, based on a subjective assessment of mental quality, strikes me as a very dangerous boundary to cross.
However, in a case where severe mental impairment or functional brain death is obvious, I would have no moral or ethical quandary with allowing another disease process which might prove fatal to run its natural course. An example would be a severe pneumonia or a septic condition. My own inclination would be toward a very non-aggressive approach in treating such a condition in a patient who clearly had no potential for recovery of higher mental or social function.
This may seem like splitting hairs, but it is not: in one case it is man who initiates death -- actively or passively; in the other death is determined by the natural course of a disease. I do not trust man to terminate life based on his own perception of quality of life, cost, burden, or ill-informed self-projection about what the patient might want. The power to initiate death (outside of the safeguards of a judicial context, when society deems a crime warrants it) will invariably lead to an ever-broadening array of "quality of life" issues for which death is "merciful."
This is, I understand, something of a compromise, and may be viewed by some as inconsistent with a pro-life position, or perhaps the opposite, of playing God. So be it. I believe the danger of actively terminating life, based on purely on an assessment of one's mental state or quality of life outweighs the obvious burden on society and individuals of preserving life at its most basic function, without functioning mental capacity. Nevertheless, when higher mental function is severely impaired, and the underlying disease process is invariably fatal, or potentially so, allowing that disease process to run its course without aggressive intervention seems to me both ethical and moral. Disease holds the power of death, rather than man.
• Patient and family input on end of life decisions is vital, but not absolute.
Because the heart of human nature is relational, decisions about end of life must involve those in close relationship with the individual as well as the individual's own preferences. But these wishes are not an absolute. Our individual decisions are not autonomous, but affect others: we do not exist in a vacuum. This is why suicide is both morally wrong and illegal: suicide transfers the emotional pain and personal responsibilities from its victims to their families, and to society. A family's decision to keep a terminal patient alive on artificial support when hope is gone damages the dying person's dignity in death, and places the financial burden on society. Such issues are often very difficult to address, since there are many gray areas in predicting timing of death and recovery prognosis.
You see, it's not just about us, about our vaunted "quality of life." Jay Nordlinger, in his NRO Online column Impromptus, quotes a reader as follows:
I've come to understand that "the point" has little or nothing to do with what the Terri Schiavos, Aunt Winnies, and Aunt Maceys of the world have to offer, or even with their so-called quality of life. Rather, in expecting us to care for and continue to love those who no longer have the capacity to give anything in return, God invites us to pick up the cross. It's not really about them anymore, it's about us and what we are willing to give of ourselves in response to the challenge. I have watched hours of coverage regarding the Schiavo controversy; not once has anyone suggested that Terri's suffering presents an opportunity for her family to give of itself purely...
In far more words, I could not -- and have not -- stated it as eloquently as this.