A Gift for the Living

It’s one of the most wrenching, divisive, subjective and emotion-laden public debates in our nation: When does a caring prolongation of life, using our marvelous medical technology, become a careless prolongation of dying? Must we always do everything we can? At what point do we give up? Who decides?

We see another branch of this debate in the California Supreme Court, where Robert Wendland’s family continues a six-year struggle over removing feeding tubes from the 49-year-old accident victim, who cannot walk, eat or talk, yet appears conscious. His mother wants to continue indefinitely pumping in a slurry of chemical nutrition. His wife wants the tubes out, claiming that her husband once said he would never want to live like a vegetable. Removal means death within days.

Every so-called right-to-die case is different. Some break ground and become famous, like those of Karen Quinlan and Nancy Cruzan. We’ve argued for nearly two decades. Here’s what has happened: The more we can do medically as a society the less we seem prepared to do as individuals, as if having respirators and dialysis and replacement organs frees us forever from confronting in advance the one thing that unites us all: our inevitable death.

Americans have a peculiar stubbornness in confronting death, as if avoiding the topic avoids the end. Only about one-third of Americans prepare wills. Only about 10% have living wills, stipulating what medical treatment, life support and quality of life they want or don’t want if incapacitated. Few suggest such preparation to parents, grandparents or siblings. Even if an elderly relative broaches the subject (“When I’m gone ... “), he or she is cut off (“Oh, Grams, you’re going to outlive us all”).

This means that most end-of-life decisions are made ad hoc with tear-filled eyes in antiseptic hospital halls by distraught family members who can’t agree on a movie rental, let alone when to let a loved one die. This forces doctors to choose which family faction to follow--the one that’s been caring for the patient and says Dad would not want to live in such pain or drugged stupor or the guilt-ridden son who flies in and says, “Doc, we must do everything possible as long as necessary.” No one knows what the patient wants; he never said. And it’s too late to ask. Meanwhile, society pays gargantuan bills for this indecision directly or through increased insurance premiums.

The American Hospital Assn. estimates that 75% to 80% of all hospital deaths now are negotiated. That is, patients and/or family try treatments and if they fail remove the respirator or antibiotics, allowing nature to take its course because a peaceful death from pneumonia next week is deemed better than an anguished one from bone cancer in three months. Doctors may gently guide such whispered family talks but could be proactive, suggesting living wills during routine office visits.

So much of this moral guesswork, the private trauma and public discord could be avoided by a simple dose of personal responsibility if each of us took the time--maybe even this week--to record, date and sign our wishes and guidelines for our own end-of-life scenario, to ensure that family members understand them and to designate someone as proxy decision-maker. Most people wear seat belts to prepare for the very unlikely event of being in a car accident. Doesn’t it make even more sense, as a gift to the living, to record our desires before the terminal event that will certainly occur for every single one of us?