A basic philosophy that I hold dear is that every person should have the right to do essentially anything that he or she wants to do, as long as it doesn’t cause harm, except possibly to him or herself. Causing harm in this case includes physical, mental, emotional, or spiritual damage to people or animals, as well as damaging the environment, including the land, air, water, and plants.
Obviously, any kind of sweeping statement like that is going to be fraught with challenges. For example, at what point does caring for someone with a chronic condition turn into harmful, prolonged torture? I doubt there is an answer that could satisfy everyone, and any law attempting to dictate such standards must allow for exceptions that will come up occasionally.
It is said that from the moment they are born, people have the right to live. Benjamin Franklin stated that “in this world nothing can be said to be certain, except death and taxes” (Letter to Jean-Baptiste Leroy. November 13, 1789. Wikiquote/Benjamin_Franklin). Hopefully, there is much that happens to a person in between birth and death: primary and secondary education, romance, love, procreation, fulfilling work, charitable contributions, and the formation of a personal value system. Just as nobody’s path through life is the same, nobody’s personal value system can develop identically. Every person feels a little differently about what is ethical and what is not.
It is possible to poll the consensus of the collective population and find the majority opinion on a range of topics. In a democratic society, the election process puts that possibility into practice. It is important to remember, however, that the views of a person holding a minority opinion are every bit as valid as the opinion of the majority. Something that seems outrageous to many, might be the clearly ethical choice given an individual’s unique personal value system.
Take the case of a vibrant, 44-years young educated linguistics professor, who ends up in a bicycle accident resulting in full-body paralysis and the loss of speech. She has to stay on a ventilator to breathe. While she may not be able to express verbally her utter despair in words to her loving husband, he can see the pain in her soul. The doctors have informed the husband that his wife will never regain her speech, leave her hospital bed, or be removed from the ventilator, but she is otherwise in remarkably healthy condition and should “live” for many years to come.
Is that really living? When every passion you love in life is denied to you, can that really be considered living? When a machine keeps your body in a state of artificially maintained life, is that life?
I would argue that the professor’s life ended in the accident. Indeed, if it weren’t for the marvels of modern medicine, the woman would have stopped breathing and died shortly afterwards. Naturally, we want to help a person who is hurt and save his or her life if possible. Sometimes we fail, and the person dies anyway. Other times, we succeed, and the person makes a full or partial recovery, and can become an inspiration to others. Christopher “Superman” Reeves was an excellent example of that. Our hypothetical linguistics professor is among the worst possible outcomes. She is a person for whom we managed to save the body, but we lost the soul.
Eloise, a tender soul of 72 years has been wracked with pain from recurring bouts of leukemia for the past ten years. Her children and grandchildren have active, happy lives of their own. She feels that she is becoming a burden on her children, and she knows that any chance of recovery will require more chemotherapy, radiation, and other terrible treatments her doctors can throw at her. She is tired of it. All of it. She has considered suicide several times, but cannot face the thought of leaving her children with all that pain. She wishes that she could just take a cruise, and as they return to port, the ship’s doctor could give her a little pill that would carry her to heaven. Her children would be happy knowing that she had enjoyed the last of her days in the tropical sun and that she had passed away peacefully and never had to face another round of chemo again.
Of course, if that were to happen, the ship’s doctor probably would be charged with malpractice or even murder. If the professor’s husband asked the doctor’s to turn off his wife’s respirator, he would be harangued as an unloving partner to end the life of a woman with many years of life left. That assumes that they would even consider his wishes in the matter.
Death is the most final decision a person can make. Short of possibly reincarnation, there is no changing your mind after that decision is made. However, living out a lifetime in pain, as a “vegetable”, or in utter despair is not really living. It can be torture. Torture can and should be prevented because it denies a person their dignity and value. It is inhumane to keep a person living in suffering.
Doctors should be permitted, when they feel it is in the best interests of their patient, to assist the person in passing on. This should never be done in a moment of extreme angst. Death should not come because of impulsive decisions or during times of acute emotional stress. Careful consideration and time should pass before such a decision is made.
Family members who decide to “pull the plug” should never be made to feel guilty for the decision. They already have made a tough decision, one they will have to live with for the rest of their lives. Supportive hospice nurses can help them with coming to terms with their grief and move on with their own lives.
Any law on this topic is sure to be controversial. A well thought out law that allows for personal reflection and decision-making and mandates that medical insurance continue to pay while the decisions are made (and thereafter if the life is to be continued), probably would be helpful.
Update: In 2012, my mother and I were put into this very situation. My father had successfully had open heart surgery, but the following morning, he suffered a massive stroke. The details of that nightmare are posted elsewhere on this blog.
We were left in charge of my father’s welfare and had to make some of the worst decisions that a family ever has to make: let him live or die?
My dad underwent this elective surgery because he wanted a chance at a better life. If he did not have the surgery, he would have slowly felt worse and worse, until he could do none of the things he loved, and within two years, he’d be dead anyway. As it was, he already was limited in his activities. He was unhappy with the life he had at that time. He wanted the time he had left to be better.
Prior to the surgery, we saw an estate attorney to draw up a family trust and wills. During the process, we clearly took a hard look at the possible outcomes, and what we each wanted to be done in case we couldn’t make that decision for ourselves. As a result, we knew that my father did not want to be a “vegetable”, stuck on life support, and just lingering on until his body finally failed. For one thing, that would be an impossible financial drain on the family, and, more importantly, he did not want to live a life worse than the one he was living then.
If we had been given a functional crystal ball that showed us the ultimate outcome of the surgery, my dad probably would have opted for the two extra years of life. However, he would never have opted for additional time if it meant being incapacitated.
For three weeks, his doctors gave us hope that they might be able to salvage him.
They wanted to put a feeding tube into him and do a procedure to enable them to put him on to a ventilator in a way that was more likely to keep him alive. We did not let them.
Some of the nurses looked at us as though we we being cruel to him. There were ways we could have made him more comfortable (and probably made their lives easier). However, those same procedures would have left him dependent on machines, and they would have trapped him in a netherworld of non-living.
From a legal standpoint, it was much easier to withhold “life saving” treatments that would have prolonged his suffering than to “turn off the switch” later once he was on them. We knew that if we caved in to pressure by those well meaning medical professionals, we would be betraying my father’s wishes.
Finally, we reached the point where even his most optimistic doctor felt that he was past the point of real recovery. Even if he somehow managed to regain consciousness, he would be unable to communicate. He would never leave his bed. He would just linger on. Worst of all, he might even be aware that it was happening to him.
At that point, we told them to go ahead and shut off the pacemaker and respirator. The surgery was quite a success, because his heart kept on beating. It was a healthy, normal, sinus rhythm. We were utterly horrified! Had we waited too long? Had we condemned him to a life worse than death?
Fortunately, within 6 hours he started showing symptoms of pneumonia. Once again, nurses tried to convince us that we needed to hook him back up to a respirator so he could breathe again. We remained steadfast, and had the hospital transition him to palliative hospice care.
My mother and I know that we did the right thing according to my father’s wishes. If we could do it over again, knowing what we know now, we would have had them turn the pacemaker off as soon as possible and not put him through such heroic measures to try to save him. The stroke had been too bad, and really there was never any hope of him returning even to the level he was when he went in for the surgery. But, we didn’t know.
While I am glad that the medical professionals wanted to see him live, I still feel we received a lot of unwelcome guilt dumped on us by some of the staff for not taking a more proactive approach to stabilizing my dad. We know, and are comfortable with the fact, that we followed my father’s wishes. We did our best to help him as long as that seemed wise, and then we cut the losses before they become permanent. While we had hoped for such a different outcome, at least we know that we did not make a huge mistake.