Quality of Life and End of Life Decisions

In a discussion of neurodegenerative diseases, especially those that appear as late-onset varieties, a question arises about prolonging life and improving quality of life.   Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, is a neurodegenerative disease involving the loss of motor neurons to the point of muscle atrophy.  This results in weakness and an eventual loss of mobility in the extremities and the rest of the body.  In advanced and severe cases, loss of these neurons in the chest region can cause difficulties in breathing well on one’s own, if at all (See the ALS Association website for more information about ALS: http://www.alsa.org).  Medical technology of the last century has enabled our society to sustain the life of individuals long past what would have been their natural time of death.  While less invasive methods can drastically improve quality of life and mobility by artificially taking on the body’s natural capacity to sustain life, more invasive methods require patients to become dependent and much less in control of their own life.  At this point, life support merely delays the inevitable and may draw out the most physically and emotionally painful part of a person’s life.  How long should life support be used and when is it acceptable to end another person’s life by terminating life support?
The issue of implementation and removal of life sustaining measures has and will continue to be a source of conflict in our society.  The legal, medical definition of death in all fifty states includes the loss of cardiopulmonary functioning and/or the irreversible end of all brain functioning, including the brain stem; others may personally see death when there is the loss of higher brain functioning, such as those in a permanent vegetative state, or a loss of personhood (Munson 2012).  Let us examine again the case of a patient with ALS whose chest muscles no longer function in breathing.  If this patient is put on a ventilator, modern medicine has effectively circumvented medical definition of death number one: the loss of cardiopulmonary functioning.  Once this happens, we may no longer rely on the cut and dry, legal, biological definition of death.  Intervening in this way has propelled us to a much more ethically problematic situation.
I would like to avoid the ethics question altogether by posing a different question entirely: What is the purpose of implementing life-sustaining measures?  I see these measures as a means of buying time when there normally would be none.  They allow the time needed to repair injury or to alleviate the body from the strain of sustaining itself when weak, such as when a patient with ALS develops pneumonia.  Often, these measures may result in a loss of dignity, may lead to a permanent need for medical care, drain the emotional stamina of friends and family as well as financial resources, and prolong life at the expense of quality of life.  When damage is irreparable, these measures can be wasteful, unnecessary, and not being used for the purposes which they were intended.   Of course, many people will disagree with me.  I, myself, may disagree should I find myself faced with a loved one at a turning point between natural death and medically sustained life.
When making decisions regarding the end of life, keeping the lines of communication open becomes extremely important.  While variable, the average life span after diagnosis of ALS is two to five years (http://www.alsa.org/about-als/facts-you-should-know.html).  With this in mind, any treatment for advanced cases of ALS could and should be viewed as end of life decisions.  Beliefs and wishes regarding medical treatment should not only be made clear to loved ones, but be recorded in a living will or durable power of attorney for health care.  This will ensure that in the event of an imminent medical emergency, one’s wishes will be followed.