Living Wills – A Miracle Story of Life or Death

Living wills are a relatively new development in the law. They came about due to increase in longevity and because of the dramatic advances in medicine after World War II which allows the doctors and machines to keep us technically alive although permanently unconscious or in a persistent vegetative state. Modern medicine is most often a blessing, but prolonging life where there is no hope, can be a curse. Over the last few decades, all states have adopted one version or another of “right to die” legislation, which we usually call a “living will”.

The first famous case was Karen Ann Quinlan who had been on life support, in a coma, for six years. Her parents had to go to the New Jersey Supreme court to force the hospital to take their daughter off life support. This caused many states to pass laws recognizing living wills to be valid legal directives.

In 1990, the United States Supreme Court decided that Nancy Cruzan who had been fed through a feeding tube for seven years, could have the tube removed. Congress then passed a law requiring hospitals to tell patients about their state’s laws on living wills.

The most famous case, which everyone remembers, is that of Terry Schiavo in 2005. The wrenching fight between her parents and her husband brought home the issues of end of life decisions to almost everyone in America. Since then, many states, including Connecticut, have strengthened their laws on living wills, so that you can avoid disputes over your wishes to stop treatment.

In Connecticut, the most important change is that all medical decisions can now be made by a “health care representative” of your choosing. Prior to 2007, the Connecticut Statutory Short Form Power of Attorney included “health care decisions”, and there was always some question if the power of attorney or the living will would govern. The law change removed health care powers from the power of attorney, although an older power of attorney with health care powers is grandfathered in and still valid. Also, the most significant part of the change is that your Health Care Representative cannot be superseded by someone running to court to have a conservator named in place of the Health Care Representative. That avoids the Terry Schiavo situation where husband and parents were fighting over who had responsibility.

You can designate the person you want to make your regular medical decisions if you are unable to communicate with your doctor, or to make end of life decisions if there is no hope of recovery. Most people choose their spouse, or their children. Ever since my mother was on life support, the advice I give to clients is that the person you choose should feel the same way about end of life decisions, and should have the emotional wherewithall to actually make that decision. It does no good to designate a child if that child could never bring himself or herself to tell the doctors, “OK. Stop the machines.”

So my miracle story of life and death is of my own mother, Stephanie Allaire. She was found unconscious and failing fast, by one of her best friends who called 911. The Board Certified Emergency Room doctors immediately put her on a ventilator and started pumping her full of antibiotics to cover most any disease or infection known to man. Days went by. Her vital signs worsened. My brother and sister came out from California as things looked bleak. I was the designated decision maker on her living will, but, as with most families, it was a collective decision. By the fifth day, we had brain experts examine her and the outlook was worsening. Brain activity was declining. She could not breathe on her own and was totally unconscious. The doctors had no idea why she was in the condition she was, because the massive antibiotics masked any tests for infection or disease.

My mother had always been a very active and vital person, and she had more than one conversation with me that she did not want to live as a vegetable. So, on one hand, I wanted to carry out her wishes, if it came to that, but on the other hand the medical experts could not specifically diagnose her condition. They could only make educated guesses that the outcome would be death or a severely debilitated person. On the night of the sixth day, we met with all the doctors and the brain activity experts to make the end of life decision. I was dreading the decision, and discovered that great feelings of guilt were inside me. As the doctors uniformly gave their negative assessments, and said, “We feel any decision you make would be appropriate”, the infectious disease doctor spoke up and said, “Well the protocol on the antibiotics is seven days, so if you want to wait until tomorrow, that’s OK.”

Whew! I could avoid the decision that night. At 5:30a.m. the next morning, I was again bedside. The ventilator was pumping. Nothing had changed. It was the seventh day. I shook the bed and said, “Mom. Can you hear me?” Nothing. Two more times, “Can you hear me?” And an eyelid opened. What was happening? I raised my voice. “If you can hear me, blink!” She blinked. She miraculously recovered, more than ten years ago. It turns out, she had contracted noninfectious meningitis, and the antibiotics had worked due to the immediate and correct decisions of the doctors, and her diminished brain activity reversed to normal.

Since that day, when I meet with clients about end of life decisions, I explain that often the decisions are clear. But even if they are clear, the person you choose should feel the same way as you about end of life decisions, should have good judgment, and have the emotional ability to make the decision.