Choosing Life, Even on a Ventilator

In the national debate on doctor-assisted suicide, we have heard from judges and lawyers, doctors and clergymen, ethicists and editorial writers, politicians and pundits. The one group conspicuously absent so far from the discussion is the one most affected by its outcome: the terminally ill.

I am one of the terminally ill. In 1988, I was diagnosed as having amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease. ALS is a degenerative neuromuscular disease that swiftly robs the victim of voluntary muscle control, including those necessary for breathing. The average life expectancy after diagnosis is two to four years. ALS does not affect the mind, so one is perfectly aware of his or her physical deterioration. By the end, the individual typically is unable to move, talk above a whisper, eat without choking or breathe without difficulty.

ALS is a terminal disease. It is progressive, unrelenting, merciless. Its endgame is inevitable. Shouldn’t a person faced with such prospects have the legal right to choose whether to go on with life or end it with dignity? ALS victim Dennis Kaye, in his book “Laugh, I Thought I’d Die,� writes that he does not want to go on a ventilator when it becomes necessary. Why should he have to? In “This Far and No More,� another book about a personal struggle with ALS, Emily Bauer (a pseudonym) poignantly wrote in her diary: “I don’t know how anyone with access to a normal life can expect me to accept such a limited one. That others have accepted a drastically limited life does not mean that is the right course of action for me.� Who has the right to tell Emily that she doesn’t have a choice?

Life is about making decisions and choices. For the terminally ill, those choices should include when to die. This doesn’t mean choice by doctors or family members or ministers or counselors or any person except the patient himself. Others can and should be consulted, but the decision must be up to--in the words of the U.S. Ninth Circuit Court of Appeals--the “mentally competent adult� patient.

But the right to choose death necessarily must include the right to choose life. I was faced with that choice in February 1991. In less than three years, I had gone from a robust, physically active person to being completely disabled. I could barely squeeze out a sound, had lost more than a third of my body weight because I had trouble swallowing even mushy foods, was almost totally paralyzed and my breathing had become very labored. What to do?

I am fortunate in that I had a real choice. Two doctors separately offered me the option of ending my life painlessly. I didn’t choose that option, but I deeply appreciate their compassion. I made a conscious decision to go on a ventilator and on with my life. I talked it over with several people close to me, especially my wife, who would take on the additional role of caregiver. But I alone made the decision. I chose life.

After five years of being tethered to a ventilator, “eating� via a tube in my stomach, “talking� with my eyebrows and operating the computer with my foot, did I make the right choice? You bet! What I have left is more valuable than what I have lost. The things I can do are more important than those that I can’t. There is much more to life than physical ability. I am still a vibrant, healthy and independent person mentally, emotionally and spiritually. I can think, reason and analyze, remember, read, write, learn and communicate. I can love, feel happiness and sadness, be enthusiastic, get angry, feel joy. I can believe, hope and have faith. That adds up to an extensive list of things I can still “do� in spite of my disease.

Although I made the right decision for me, that is not to say that my choice would be appropriate for everyone. The personal struggles of people against life-threatening illnesses do not lend themselves to facile judgments. These are highly individual battles that depend on many factors, from personal outlook and philosophy to the specific circumstances and, significantly, to the nature of the illness itself. For instance, in ALS, the symptoms vary dramatically from patient to patient; one person’s experience is no guide to someone else’s.

That said, I still would like to talk to those people who are seeking to end their lives--and would have liked to talk to those who did. What would I say? I would simply tell them that there is life on a ventilator. I have found that despite the difficult conditions of disability and terminal illness, life can be meaningful, productive, fulfilling, rewarding and valuable. I defend their right to die, but I also affirm their right to live.

For me, having a choice is the key. No one forced me to live. No one forced me to die. I chose. Because of that, I can cope with the negatives and “downs� as well as relish the positives and “ups� that my life presents. Choice makes all the difference; it’s as simple and as complicated as that.