Preventing a hideous death, not truncating an unhappy life
WASHINGTON » Although Amanda Villegas’s manual dexterity is hindered by her mild case of cerebral palsy, she is a gifted photographer who documented the last five days of her husband’s life with bladder cancer that metastasized. She has posted the photos on Google Drive, under “This is Cancer.” Steel yourself before viewing them. But view them. They ground in reality the increasingly urgent debate about medical aid in dying (MAID).
Chris was 29 when he died at home on June 19, 2019, just a week after doctors belatedly gave him a terminal prognosis. The tragedy of his disease had been compounded by multiple misdiagnoses. The unnecessary horrors of his final days were the result of a hospital’s misinformation — perhaps religiously motivated mendacity — and a restrictive provision of a California law that has been liberalized, effective Jan. 1, 2022.
Speaking recently by phone from California, Amanda said that Chris, who was skeletal at the end, was so drenched in pain that “he would cringe and scream if anyone touched or moved his bed.” He had been told two falsehoods, that MAID is illegal in California, then that it is legal only in Northern California. While he had the strength, he repeatedly screamed “please let me go.” He died with tubes draining fluids from his stomach, kidneys and chest.
California’s MAID law, as enacted in 2015, allows mentally capable adults, with a medical diagnosis of less than six months to live, the option of receiving prescription medication that enables them to die in their sleep. Until amended last year, the law’s eligibility process could take weeks, even months. It included a 15-day waiting period between two oral requests for the medication — a delay that put a peaceful end beyond Chris’s reach.
One-third of those beginning the eligibility process died before completing it. Beginning this year, the waiting period has been reduced to 48 hours, and hospitals and hospices will be required to post their MAID policies on their websites. (New Mexico adopted similar legislation last year.)
The Economist magazine, true to its classical liberal tradition, recently praised “the welcome spread of assisted dying” for advancing a “basic freedom” that is now “legal in one form or another in a dozen countries.”
Worldwide, MAID is generating useful data. A British study found that doctors tend to overestimate — by 500% — how long terminal patients will live, often to give those suffering illusory hope. In Oregon, which has had MAID since 1997, a third of those who receive end-of-life medication do not take it but derive comfort from having it at hand. In the 25 years since Oregon became the first state to legalize MAID, only 4,209 people nationwide have used it to assert their autonomy in ending their lives on their terms. Ninety percent died where most Americans say they want to die: at home, often with loved ones.
Kim Callinan, president and CEO of Compassion & Choices, which advocates for MAID, says it “creates a shift within our end-of-life care system from a paternalistic model to one that is resoundingly patient-driven.” Her organization says that “over the past six years, 30 national and state medical and professional associations have endorsed or dropped their opposition to” MAID.
Skeptics understandably warn about a slippery slope: Persons worried about becoming burdens on their families might find the MAID option coming to imply an obligation. So, a doctor mentioning it might inadvertently be experienced as coercive. If MAID is justified by fear of severe pain culminating in death in less than six months, what about informed choices by mentally sound persons gripped by advancing dementia? Or the psychological afflictions of, say, persons deeply weary of life. Are such persons mentally capable?
Crucially, MAID is for those who are already dying and want help — for preventing a hideous death, not for truncating an unhappy life. MAID — the medical management of a natural process — should be considered a supplement to hospice (palliative) care.
Life is lived on a slippery slope: Taxation can become confiscation, police can become instruments of tyranny, laws can metastasize suffocatingly. However, taxation, police and laws are indispensable. The challenge is to minimize dangers that cannot be entirely eliminated from society.
In percentage terms, Americans 85 and older are the nation’s most rapidly growing age cohort. Medical marvels extend, and enhance the quality of, life — up to a point. MAID, enveloped in proper protocols, can and should be a dignity-enhancing response to especially harrowing rendezvous with the inevitable.