The peril of California’s ‘end of life’ act

At the end of last month, Gov. Arnold Schwarzenegger signed AB 2747, the Terminal Patients’ Right to Know End-of-Life Options Act, into law. Supporters hailed it as a victory for Californians in their final days because it requires full disclosure of all options available to terminally ill patients, including euthanasia. Opponents, however, said they worried that the new law would push vulnerable, possibly depressed and uninformed people toward a hasty and ill-considered demise.

I was an agnostic on the question at first. Both sides offered compelling arguments. But after a recent, grueling, three-month hospitalization at the UCLA Medical Center’s intensive-care unit, I am sadly drawn to the latter view. It’s too easy to tip the severely ill toward craving death above other options.

To be sure, I was not a typical patient. I was born with a neurological disability called spinal muscular atrophy. I have never had the muscles to stand or walk. Over the last 10 years, I’ve lost the use of my hands too. Yet with the help of a motorized wheelchair, a voice-recognition computer and personal attendants to assist with bathing, dressing and other needs, I live a pretty normal life. Originally, I was not supposed to live past my teens, but at 45, I’m a Harvard graduate, a frequent contributor to several financial magazines, a husband and the father of two.

Nevertheless, last December, a severe gastrointestinal infection landed me in the emergency room. I had to have my colon removed; then the prolonged inactivity caused multiple pneumonias, scattered blood clots and other complications. I didn’t return home until March.

Naturally, I’m grateful to the army of doctors and nurses who looked after me and doubtless saved my life. But I also know how disoriented and powerless I felt strung up with a variety of tubes, which temporarily rendered me unable to speak. It would have been easy to become very depressed. If not for round-the-clock visits from my wife and other family members to interpret my signals, call for help when necessary and explain my physical limitations to the hospital staff, I’m certain that I would not have received the quality of treatment I did. My needs -- and the very full life I normally enjoy -- might have been sorely misjudged.

Under the new law, it’s not inconceivable that one of the many doctors, nurses or medical assistants who looked after me might have deemed me terminally ill -- between the blood clots and the low oxygen and the simple fact that, medically speaking, I’ve been terminally ill my whole life.

What would it have taken for them to begin the process of counseling me about death options? Theoretically, I would have to ask for the information, but would vociferous complaining and moaning have been sufficient to prompt an overly helpful nurse to produce euthanasia literature? Drugged and isolated, possibly depressed, what if I were so miserable that I accidentally said, “I wish I were dead”? Would they have instantly appeared with data and information and counselors to tell me how it could be accomplished?

This is not delusional thinking. I’ve seen the way harried medical staff can make dangerous errors -- innocent misdiagnoses and inadvertent misdosings of prescriptions, for instance. In my own case, though I was well cared for overall, I left UCLA with a terrible bedsore, which I can only attribute to the negligence of an overworked staff -- a common side effect of hospitalization, I am told. What’s more, many of my nurses had a hard time believing that I normally live the life I do. One particularly nosy one actually questioned my wife about whether I was honestly the father of my children.

What the new law does is make it easier for nonphysicians to recommend death as a valid medical option. It provides no legal standard, nor does a physician have to be involved in the discussions.

It is true, of course, that many severely ill people would like to accelerate an end to their suffering. They see no point in preserving a troubled, limited existence. I do not begrudge those who would find solace in suicide.

But if the law is to guarantee full access to the range of available options, as AB 2747 is intended to do, it should mandate counseling about all nondeath options too. It should take into account the depression that severely ill people face, the disorientation that comes of isolation in a hospital ward and the vulnerability of patients to the whims and errors of their caregivers. It should provide oversight by doctors to avoid abuse by perhaps well-meaning though misguided medical practitioners.

Granting caregivers who hardly know you the power to question the validity of your life does a serious disservice to an already marginalized population. It could well be the last straw in a life that’s barely hanging on.

Ben Mattlin is a contributing editor at Institutional Investor and Dealmaker magazines, an NPR commentator and a frequent contributor to other financial and general interest magazines.