Death, the ultimate indignity, is redeemed a little whenever a person is able to decide how to meet the inevitable — or so many of us seem to feel.
Whether to let go at some point, declining the wholesale medicalization of one’s final days — or to fight to the last, pursuing every possible reprieve: The choice, when fate allows it, can be one last expression of autonomy and individuality.
Yet how far to endorse end-of-life freedoms confronts society with quandaries and worries — as a flurry of recent news stories about liberty and death reminds us.
In London, a stricken baby boy has become a heartbreaking global celebrity as defiant parents and unyielding British legal and health systems battle over whether Charlie Gard’s improbable fight for life should continue.
In California, officials last month released the first report under the state’s 2015 assisted-suicide law, detailing how many sufferers, and of what kind, have sought society’s help to end their struggles.
And in Washington, D.C., advocates are pushing federal “right-to-try” legislation similar to laws recently enacted in 37 states, including Minnesota, that force unyielding regulators to step aside and let the dying try unproven treatments if they choose.
Little Charlie’s plight raises not just an end-of-life dilemma but the issue of incapacity in a particularly cruel form. Nothing can be known about an infant’s wishes — no one remembers his once saying he would never want to be put on a machine. Adults must decide, and Charlie’s parents adamantly desire to bring him to America for long-shot experimental treatment; his doctors, insisting that only additional suffering can result and that it is time to let Charlie die with dignity, have gone to court and so far blocked the parents’ plans.
Charlie’s parents may well be misguided about what’s best for him. There’s no reason to doubt that all concerned have the child’s well-being at heart. But to American ears, it just sounds strange that physicians and judges can forbid parents from trying to save their own child’s life — especially when Charlie’s parents have raised some $1.7 million in private donations to pay for treatment.
This isn’t exactly a matter of Britain’s vaunted “single-payer” health care system showing a despotic, death-panel side (though foes of “socialized medicine” have been eager to portray it that way). But it may be a glimpse into the fundamentally more socialistic — or communitarian, if you prefer — legal and cultural atmosphere of European nations.
National Public Radio interviewed Cambridge legal scholar Claire Fenton-Glynn, who explained: “[U]nder English law, we don’t talk about parental rights. We talk about parental responsibility. We don’t say that a parent has a right to make a decision for their child, particularly in the cases of medical treatment. So if there is a dispute between the doctors and the parents as to what should be done, the option … is to go before the court. And then the court … doesn’t start with the presumption that the parents are right.”
U.S. parental rights, too, are far from absolute. But here it’s possible to worry that officials are often too slow to intervene on behalf of abused or neglected children (think of Minnesota’s child-protection tragedies).
In Charlie’s case, it simply would be easier to side with the London medical experts if his parents were fighting to deny their child treatment — if the law’s presumption were in favor, not of the parents, but of life. As it is, Charlie’s moral and legal predicament seems as rare and perplexing as his medical condition.
Less unusual are terminally ill adults who can express clearly what they want but can’t have. One type, rather like Charlie’s parents, seek to fight on for life, beyond the range of therapies approved by experts at the U.S. Food and Drug Administration. “Right to Try” legislation has proved contagious coast to coast and gives the truly dying, who have exhausted all conventional remedies, permission to circumvent regulations and give a go to whatever is out there.
Elements of the health care establishment, particularly ethicists, object to this popular uprising against medical authority — for a range of reasons that seem to boil down to its eroding medical authority, which always threatens further erosion. It’s a legitimate concern but a weak argument against the freedom to take one last chance at survival.
Meanwhile, the freedom to call it a day took effect in California in the summer of 2016, making it the fifth state — and of course by far the largest one — to legalize physician- aided death for the terminally ill. At the end of June, the state’s health department issued its first mandated report on people who sought and self-administered “aid-in-dying drugs” in the latter half of 2016.
In all, the report says 111 persons in California died after taking prescribed suicide drugs, accounting for roughly 1 in every 1,650 deaths in the state during the period covered. Their median age was 73, and 84 percent were receiving hospice or palliative care, primarily for cancer and neuromuscular diseases such as ALS and Parkinson’s.
The overall statistics paint a reassuring portrait of the kinds of circumstances where the right to say when enough is enough seems easy to support. It’s often said we show our pets more mercy than we show one another in this regard, and the truth is many of us wait too long with our pets, focused on our own pain in letting go instead of on theirs in lingering.
But as this frontier of freedom expands, it would be naive to doubt that once the right to “aid-in-dying” is established, some unwell Americans might receive wrongly motivated “aid-in-deciding” that their time has come — and sometimes the line between counsel and manipulation will be crossed.
Those wary of the right to die for this or other reasons had best be planning how to push for sufficient safeguards to ensure at least that these truly are free choices. We have seen in recent years how rapidly venerable social norms can be swept away once the process begins.
It may be notable, in the California statistics, that the 111 sufferers who took their leave in 2016 were only a bit over half of those who secured the drugs. Some died before ingesting the prescriptions, but almost a third of all who sought “aid-in-dying” in 2016 appear still to be alive.
Maybe this suggests that for many, having the means of escape on hand, and receiving the community’s blessing to choose for oneself, is comfort enough. One final freedom with which to carry on, at least for a time.
D.J. Tice is at Doug.Tice@startribune.com.