A good death

It was surprisingly easy to tell when Dad needed more pain medication. His brow would crease slightly, as it used to do back when he was still racing and got his hands on a particularly delicate or complicated part of one of his engines, something that had to be just so in order to get the best performance possible. During those last days, he never opened his eyes, but when his forehead began to wrinkle up, we could ask for a morphine booster to the Fentanyl patch before he began to really hurt. The pain medication never failed to come, and it never failed to help. I watched him relax each time, and I was grateful.

During the first half of May, I thought a lot about the decisions we make at the end of life, because my dad’s life ended then. I thought I knew what to expect. I was wrong.

We were luckier than many families, I think, because Dad was always clear about his disdain for things like tubes and machines. The only good use for machinery, in Dad’s book, was under the hood—preferably under the hood of a classic Chevy, like the 409 he raced throughout the Northwest in the ’60s. At a number of drag strips in Oregon, Washington and Northern California, he’d been known as “Mr. 409,” racing as a semi-pro and placing at the National Hot Rod Association summer nationals in Seattle one year.

And he’d watched his beloved Uncle Loda survive as an invalid for more than 20 years after a debilitating stroke. Dad was insistent that he didn’t want that. No nursing homes. He called the shots at the end, and what he wanted was what we all want: a comfortable, dignified death.

The things that seem to scare us most about death—other than the uncertainty of death itself—are three: that we will leave our families burdened with our debts, that we will die alone and uncared for, and that we will die in pain.

That’s why Oregon, where both sides of my family settled before the turn of the last century and still live, passed an assisted-suicide law. No people on the planet are more determined to do things their own way than Oregonians—“stubborn as mules and twice as willful,” as my Auntie Peg used to say—and their assisted-suicide law is that last grasp for control.

Supporters of the “Compassionate Choices” law, introduced as Assembly Bill 651 this session, needn’t be too disappointed that it failed to muster the necessary votes to move out of the Senate Judiciary Committee. California didn’t join Oregon this year, but assisted suicide—end-of-life choices, euthanasia or whatever we want to call it—is an idea that won’t go away. The Compassionate Choices bill, or another like it, will certainly be back before California’s legislators next session. Polls show that most Californians favor such a law, which almost makes it seem inevitable.

The only problem with the Compassionate Choices law is that it’s the wrong approach to address a serious problem. We should all be concerned about the choices we face when all the medical technology and treatments at our disposal can do nothing to prolong life. But assisting each other to take our own lives ought to be the very last resort on the list of possible responses to the end of life.

The arguments for some form of assisted suicide all come down, at their heart, to one principle: We shouldn’t have to linger in pain when we are ready to die. And while I agree absolutely with that principle, there are a number of other circumstances that make assisted suicide a questionable exercise of the ideal.

The first circumstance is access to adequate, affordable health care. The one thing my dad would never have wanted would be to leave his wife and kids with the burden of outrageous medical expenses. At a time when roughly half of all bankruptcies are the result of medical bills, it can happen easily enough. We all knew Dad didn’t have much time left, but because death has been so medicalized—turned into something unnatural and unacceptable, to be staved off by every technical device at our disposal—the first thing the medical professionals wanted to do was to run more expensive tests. That may be useful when you don’t know what’s going on, but we knew.

And Dad said no. He didn’t need a new law to say no to diagnostic tests, and he didn’t need a new law to say no to extreme measures. But he also didn’t feel like he had to say no because he was afraid of how those things would be paid for—he was among the privileged working people with access to adequate health care.

So, the first thing that needs attention before we rush to make it easier to end your own life is to make adequate health care accessible to everyone. If you can’t afford to make a choice, it’s not a choice, “compassionate” or otherwise. Or, as one of my friends says, when you’ve got no money at all, you can’t choose between hamburger and steak.

Then there’s the issue of companionship and care. The hospice worker who came to talk to us was reassuring and helpful—though Dad didn’t live long enough to go home with hospice care, we knew we’d have support. But what if he didn’t have a wife, three kids, assorted kids-in-law and grandchildren willing to help care for him? A person as proud and private as my dad would certainly rather end it himself than pull a Blanche DuBois and rely on the kindness of strangers.

No wonder some people—those with families and communities too stressed, dysfunctional or nonexistent to rely on—think that it’s better to take their own lives than risk receiving less-than-competent care in their final days.

Sandra M. Gilbert, a professor emeritus at UC Davis and the author of Death’s Door: Modern Dying and the Ways We Grieve, pointed out that it’s easy to agree with the opponents of assisted suicide who argue that some people may be especially vulnerable to suicide as a first option rather than a last resort. In an interview last spring, Gilbert expressed skepticism at the possibility that it was a coincidence that one of the women whose suicide the notorious Dr. Kevorkian “assisted” in “had a long illness ahead of her, and her husband had expressed a reluctance to take care of her.”

“I do agree with the people who say that a lot of people are vulnerable to being persuaded that death is their best option,” she told me.

So, rather than make it easier for such vulnerable people to end their lives, shouldn’t we first make appropriate end-of-life care, especially hospice, more easily accessible? Addressing that vulnerability—the fear of having to go without care, or of having no means to pay for it—would seem an obvious prerequisite to any plans to make assisted suicide legal.

But the big issue—the one at the top of the list for all of us, whether we’re in favor of assisted suicide or not—is pain. When Dad made his decision to refuse a feeding tube, he was asked if he knew he was dying. He did. Did he want pain medication only? Again, he did. There was never a problem with getting pain medication for him.

And here’s the twist. Maybe the reason none of the doctors or nurses at that small hospital had any problem with providing all the palliative care Dad needed was because of Oregon’s assisted-suicide law. When medical professionals are freed from the fear of being treated as if they are illicit drug dealers when they treat the pain of the dying adequately, they may be a bit more willing to prescribe and administer the necessary palliative care.

Near the end, though we didn’t yet know that for sure, my youngest brother set up a small television so that he and Dad could watch a NASCAR race, a pastime they’d shared for years. My little brother smuggled a can of Hamm’s beer into the hospital room and swabbed Dad’s mouth out with it. It was the last time any of us saw him smile. I don’t know if he was even aware that the driver he always called “that bug-eyed sandwich stuffer” won that night. Dad wasn’t conscious when the race was over, and he died 36 hours later.

Am I in favor of or opposed to a Compassionate Choices law to legitimize assisted suicide for the terminally ill? I don’t know. As a committed fan of individual liberties, I believe we should all be able to make our own choices about our lives—how we live and with whom, certainly. When there is no end to the pain except death, I doubt I would want to deprive another human being of the final kindness that I would never consider denying one of my pets.

But I’m wary of making death an option when we haven’t fulfilled our obligation to life. We all want a good death. Not all of us will get it. I think my dad did, and I know he was fortunate. But until all of us—not just the fortunate insured, with resources and family to rely on—have access to adequate health care, hospice and palliative care at the end of life, we’re not ready to talk about assisted suicide.