Seventy-four years ago on a rainy afternoon in Long Beach, a bride in a silk bobbinet gown stood at the back of the Presbyterian Church, preparing to walk down the aisle. Next to her was her father, a Naval commander, who eyed the groom warily.
With music playing and the congregation waiting, he leaned in and whispered in her ear: “It’s not too late to change your mind, dear.”
Today, that bride greets me from her bed in the back of a board-and-care home in San Mateo with a quip of her own. “Did you know I’m 100 years old?” she asks.
My grandmother is exaggerating, and she knows it. She’s only 98. But I don’t correct her. Among the many things I inherited from her is the conviction that facts shouldn’t get in the way of a good line. She’s also taught me that you can’t ever be too sure about anything in life, especially near the end.
Grandma Oops, as we call her (she is a major league klutz), is in my thoughts often these days, especially with so much news about SB 128, the End of Life Option bill, as it makes its way through the California legislature. The legislation would allow mentally competent California residents who have been diagnosed as having six or fewer months to live to obtain a prescription for lethal drugs they can give themselves.
I have no beef with the legislation, and my grandmother—who once told me she’d donated to the Hemlock Society, a forerunner of the leading advocacy group for the legislation—is strongly for it. I’d even go so far as to say that such legislation suits California, where the long-standing movement to give individuals and their families more control over their own deaths dates at least to the publication of Oakland resident Jessica Mitford’s classic 1963 exposé of the funeral business, The American Way of Death. (Which Grandma Oops once suggested I read, and it was terrifically funny).
What doesn’t fit California, or the reality of the end of our lives, is the strident tone and the certainty of those involved on both sides of the debate.
The advocates for SB 128 can be unnerving in their unswerving commitment to the right to die, and in their bullying of those of us who would dare to use the term “suicide” in this context. The opponents are just as rigid. Religious leaders call the suicide of a terminally ill person immoral, an affront to God. Doctors claim that physicians must be healers and nothing more, which seems a bit much given all the excessive charging of helpless patients, and lack of empathy, in that profession. And advocates for the disabled have been quick to gin up fears of coercive suicides of people whose care requires too much money and trouble.
These claims, and the attention to the bill, are way overblown, for two reasons. One reason is mathematical. Even if the bill is enacted, such assisted suicides are certain to be extremely rare. In Oregon, which pioneered this right, there have been fewer than 1,000 such suicides since 1998, representing less than 3/10 of 1 percent of deaths in the state. Assisted suicide has accrued all the trappings of an official American political issue, even though it’s a choice that few of us will ever really consider.
The second reason is fuzzier, literally: To apply rigid moral claims to any discussion of the end of life is like trying to drink coffee with a fork. Life and its end remain, in so many ways, profoundly mysterious. To bring certainties to such an uncertain sphere is foolish. And wrong.
It also misses the point. The most important right to protect at life’s end is not the right to die; that’s too narrow. It’s having the right—and the power—to change your mind.
After all, changes of mind define a life—that’s what my grandmother taught me.
She didn’t change her mind—thank God—when her father offered the chance at the church; she married my grandfather, a union that lasted for 59 years, until his death. But Grandma Oops changed her mind about lots of things, including marriage and the traditional family, which she initially didn’t care for. “I didn’t want to marry anybody. I thought it was a nuisance. I didn’t want any children,” she once said. But she married as a nod to the times—you couldn’t spend all your time with a man if you didn’t marry him. And she changed her mind about kids when she saw how good her husband was with them.
She was committed to the casual Southern California life in Long Beach—Russell’s hamburgers, movies at the West Coast Theatre on Ocean Avenue, family dinners at her parents’ house in Belmont Shore. But she changed her mind when my grandfather, a civilian Navy employee, got a good posting at the U.S. Naval Radiological Defense Laboratory at Hunters Point in San Francisco. And she became a devoted Northern Californian, a schoolteacher and community pillar of San Mateo.
She and my grandfather were fortunate to work for the government and earn generous benefits that allowed them to choose their late-in-life care. They considered different options, but both decided to spend their last days at a board-and-care that a large Tongan family runs out of their home. Having so many people around feels less isolating. I’ve been visiting the home for more than 15 years—first for my grandfather, and then for the last decade for my grandmother.
Tracking the decline of someone named Grandma Oops has been a challenge. She was prone to spills and mixing up names even when she was young, so falls and forgetfulness weren’t reliable signs of problems. The milestones have been smaller: spending less time pruning back bushes within an inch of their lives; ending her volunteer work at the local elementary school; fewer visits on Sundays to her beloved College Heights Church; and loss of hearing.
On her 90th birthday, with extended family in the Bay Area for a party, Grandma Oops developed a kidney problem and was rushed to the local Kaiser hospital and told she needed dialysis or she would die. She refused, saying she’d used too many of the earth’s resources already.
Eight years later, she’s still refusing treatment when a health issue comes up (cost-conscious Kaiser should put her in its ads), and expressing embarrassment about overstaying her welcome here on the planet. But when I visit her, I bring along her three great-grandchildren, ages 6, 4, and 20 months. And she hugs them and talks with them and encourages them to run wildly up and down the long hallway of the board-and-care. The toddler and she are particularly affectionate; it is wondrous to see two people 96 ½ years apart in age (one born before the U.S. entry into World War I, the other born during President Obama’s second term) connect like that. She says now that she’s changed her mind—and she’s glad she lived along enough to know them.
One of the best things about SB 128 is that it leaves room for people to change their minds. You have to make two oral requests for lethal drugs 15 days apart, and a written request with witnesses. You can change course at any time—after all, you have to administer the medication yourself. It would be even better if the bill ensured that the second medical opinion required for the drugs be fully independent, outside the HMO of the terminally ill person.
The real problem with the legislation is its narrow focus. California should be having a much broader conversation about the end of life, and especially about increasing the availability of high-quality palliative care.
Such care is still hard to find, especially outside the big coastal cities. Too few patients know about it, and too few health professionals are trained in it. Indeed, California as a whole has decided not to make the investments in the care we’ll need as our population of seniors explodes over the next two decades.
Of course, it’s not too late for us to change our minds.