“I don’t want to be a burden” is a common refrain among the sick and dying, with good reason.
As debility advances, independence dwindles. For care-givers, basic daily obligations like feeding, bathing and wound care can become exhausting, leaving little time to fully attend the sick person’s emotional needs, much less sustain the care-giver’s own health.
End-of-life services can consume more dollar resources than all the medical expenditures that have preceded them. Medical debt is responsible for many bankruptcies.
No wonder the prospect of becoming a “burden” adds to the suffering of the dying.
At least as intimidating is another concern, expressed as “Don’t let that happen to me.”
“That” refers to extraordinary death-prolonging technological interventions. Spend any time around an ICU, and you’ll see people entangled in a jungle of vinyl vines and adhesive creepers. For those who maintain some degree of consciousness, day and night fuse into an eternal twilight punctuated by the painful insertion of needles and manipulation of tubes.
Some of them get well. If not, they might endure helplessness, humiliation and pain which can be cured only by death. It can go on for months. If the patient has signed a “do not resuscitate” directive — and the family and medical staff are aware of it and willing to abide by it — initiating new, more invasive “therapies” might be avoided, but a lot can go wrong with the process. When it does, the patient can’t do a damn thing about it. It’s too late, and he is too powerless.
Seventy-five percent of Americans would prefer to die at home; only 20 percent actually do. Up to 90 percent of docs reject the use of CPR or ventilators when they face death themselves. They know what can happen.
There is a severe shortage of available resources needed to make quality end-of-life care, like hospice, widely accessible. Docs in general are not well trained in pain management — how to select, dose and monitor pain meds.
But even when optimal support is available, there remains a subset of dying people whose existence is unbearable, or whose course will predictably result in loss of their ability to execute their own decisions at a most critical time.
Simply withdrawing life-sustaining medications, so-called passive euthanasia, allowing “Nature to take its course,” can work out, provided adequate attention is devoted to comfort. Relatives and docs won’t always honor such wishes, even if they know about them, and in many scenarios, they don’t know. Relatives can insist on invoking every conceivable intervention before accepting the inevitable. Fearing a lawsuit, the doc might continue fruitless hi-tech torture; moribund patients don’t sue, but guilt-ridden relatives do.
It’s understandable, therefore, that a robust majority of Americans approves of doctor-assisted suicide as a personal right.
Most people who participate in effective advance planning choose maximizing independence and quality of life over simply living longer. It’s not how many days remain on your calendar; it’s how many of those days deserve a smiley face.
Indeed, the ability to decide for oneself when, where and how to end one’s life is among the most fundamental of human rights. With respect for proper precautions, this decision is the ultimate affirmation of self, the supreme exercise of the will.
Initially, semantics were problematic for advocates of assisted dying. Suicide has been criminalized historically, primarily to accommodate religious rulers and would-be theocrats. We “commit” suicide, as we commit crimes and sins.
Supposedly, though stigmatizing the desperate dying is cruel, it’s still necessary in order to dissuade them from committing this sin; and while we can’t jail the dead, we can prosecute anyone who assists them.
That’s changing. Five states have legalized physician-assisted dying, and at least 18 more are formally considering doing so.
The first was Oregon in 1997. Many criteria must be met if one hopes to end life at the optimal time. Requests for lethal pills must be confirmed by two witnesses and approved by two docs. Both docs must agree the patient has no more than six months to live. The patient must be “competent,” with no mental illness that compromises judgment.
The six-months rule works for people with advanced cancer, where survival is reasonably predictable. Unfortunately, for people with degenerative diseases, the course is more uncertain, though the central concern remains — that time and disease will rob them of the ability to guide their fate if they wait too long.
Assisted dying, once made available, doesn’t open the floodgates. In the first year after the Oregon law passed, only 24 people received prescriptions, and 16 used them. In 2014, after 16 years to adjust to the process, 155 people obtained the drugs, and 105 used them, about one-third of 1 percent of statewide deaths that year.
Oregon has closely monitored their program, finding zero reports of abuse or coercion.
Why did some change their minds? It shouldn’t matter, since the whole point is to provide people with an option, not a mandate. I’ve had numerous patients to whom I’d provided a “just-in-case” pill (for other purposes!) later tell me “I didn’t actually have to take that pill — but I was really glad I had it!” It’s comforting to know that no matter how bad things get, we always have an escape hatch. It has actually allowed people to endure life longer, no longer fearing ultimate loss of control.
Next time: What’s wrong with assisted dying?
Jon Hauxwell, MD, is a retired family physician who grew up in Stockton
and lives outside Hays.