Barbara Coombs Lee

Jan 23, 2013Potent Breakthrough in Canada

By Barbara Coombs Lee
1/23/2013

Last week the government of Quebec announced plans to recognize aid in dying as a legal and protected medical practice in the province. They promise a new law by this summer.

A tremendously exciting announcement, it reveals a seismic shift in the thinking of both medical and political leaders. I cannot overstate the magnitude and power of this shift, and fervently hope America’s medical associations and politicians soon follow suit.

Specifically, the government of Quebec intends to regulate aid in dying in spite of the federal crime of assisting a suicide. As in the U.S., federal laws generally supersede provincial ones, and most people assume laws against assisting a suicide prevent doctors from providing life-ending medication to qualified patients who ask.

Canada’s national spokespeople are irate because they, too, hold this assumption. They respond that Quebec cannot change Canada’s criminal code. Even now federal lawyers are defending the assisted-suicide law against a British Columbia judge’s ruling that it’s unconstitutional as applied to aid in dying. They say federal law defines the crime broadly and they must defend it because parliament has repeatedly rejected reform.

But Quebec disagrees, says it intends to proceed and will stand on firm legal ground when it does. The Quebec government is confident it has the authority to adopt law and policy to meet its citizens’ deep desire for more choices at the end of life. How is this possible?

It is possible because aid in dying is different from assisting suicide. It is as different as a surgery is from a stabbing. One is a crime and the other a careful medical practice. Governments outlaw stabbings, but that doesn’t prevent them from regulating surgeries.

Apparently in Canada’s separation of powers, the federal government defines and prosecutes crime, and the provinces oversee healthcare. Quebec health officials have simply adopted the common-sense view that easing the suffering of a dying patient and ensuring a peaceful and pain-free death is a medical matter, not a criminal one. And as such, it falls under the jurisdiction of the province to regulate the practice of medicine.

For well over a decade Compassion & Choices has argued vigorously for a change from the language of “suicide.” We urge that “Language Matters,” as we call on academics, public officials, journalists and headline writers to employ neutral, accurate words to refer to assisted death. Oregon’s experience informs much of the national dialogue, yet commentators notoriously deploy inflammatory suicide language in what should be neutral public forums. Assisting a suicide is a felony in Oregon; to call medical procedures under Oregon’s Death with Dignity Act “assisted suicide” falsely labels them a crime.

Assisting a suicide – to maliciously goad a mentally ill person to act on his self-destructive impulses – should be understood as a crime. Aid in dying – to mercifully respond to a rational dying person’s request to abbreviate his suffering –should be understood as medical practice. Repeatedly, anti-choice forces have won political contests by blurring this stark and monumental distinction. That tactic just lost its mojo in Quebec.

Here, finally, officials are no longer blind to the distinction between assisted suicide and aid in dying, and they embrace its concrete legal consequences. Here at last comes validation that we have not been merely picking at semantics. Different words evoke different circumstances and different conduct.

Don’t think the blinders fell suddenly. Exhaustive study and deliberation by prominent entities gradually, carefully, broadened the perspectives and changed the formal position of government.

Doctors took the first step. In 2006 the provincial medical association, the Collège des Médecins du Québec, embarked on three years of study in which it examined modern medicine and society, polled its members, and reflected on the results. The Collège’s refreshing and authoritative discussion paper, Physicians, Appropriate Care and the Debate on Euthanasia – A Reflection, came out in October 2009 and launched the serious dialogue now bearing fruit.

Quebec’s National Assembly responded by appointing an all-party select committee that held hearings and deliberated for two years. Last March it published a beautiful report of findings and recommendations. Its 178 pages are available in English and well worth the read.

Finally, the government appointed three expert lawyers to a judicial panel to make policy recommendations and propose steps to implementation. It is this report that lays out the legal rationale and explains how the Assembly and the Ministry of Health are to proceed. For French readers, the 400-page document is available here.

The lesson here is that lawyers and politicians go where doctors lead them. They want doctors to decide what constitutes ethical practice for the 21^st century. Tradition-bound medical societies of the United States (notably the AMA) guard their historic dominance in the doctor/patient relationship and refuse to acknowledge changing public expectations. They resist measures that entrust to patients crucial decisions about their own lives and deaths. They have used and continue to use their enormous political power and vast treasure to obstruct sane policy on aid in dying.

Other, more progressive medical societies (notably the American Medical Women’s Association and the American Public Health Association) have embraced change and support both the use of accurate language and the option of aid in dying.

With this enlightened example to our north, perhaps American medicine cannot continue its obstructionism much longer.

Nov 13, 2012Aid-in-Dying Supporters Vow to Help Hawaii’s Terminally Ill

by Lara Yamada
KITV News
November 12, 2012

“In the end of February, it was discovered I had kidney cancer,” said hospice care worker Dorothy Haden, who has stage four cancer.

“I tried to live my life with dignity, and I do want to end my life with dignity,” said former lawmaker Earnest Juggie Heen, who has liver and pancreatic cancer.

Both said they want to choose how and when they end their lives.

“It’s our position that aid in dying is legal and it can be incorporated into medical practice legitimately here in Hawaii,” said Barbara Coombs Lee, who is the president of Compassion & Choices, a national nonprofit organization that supports aid in dying. She returned to Hawaii in early November, one year after a small group of Hawaii doctors first prescribed life-ending medication to a terminally ill patient.

“Hawaii has a constellation of laws that have never really criminalized aid in dying,” she said.

She said in the past year, 31 people have inquired about aid in dying, seven qualified to receive medication, and four were actually prescribed it, but she said all four died of natural causes before taking that prescription.

“People just want the comfort. They just want peace of mind,” she told KITV4 reporter Lara Yamada. More

Oct 31, 2012Vote Like Your Future Depends on It

This election season is extracting an enormous toll from candidates and citizens alike.

Pressure is always intense in a Presidential year, but this year is different. Airwaves and Internet hammer away with news of poll after poll, minute campaign details and endless tit for tat. The presidential race, Senate and House races — even local campaigns — all occupy space in national media. Twenty e-mails appear in my inbox by noon each day, all URGENT and all pleading for funds.

The money flow is mind boggling. According to followthemoney.org, state races alone have raised almost $1.2 Billion. OpenSecrets.org reports that each presidential campaign has raised and spent almost a billion dollars. And of course, this doesn’t include the biggest spenders of all, the super PACs.

The world watches in wonder and dismay, and my sense is most Americans just want it to be over. It’s understandable that people might block out the noise and ignore politics altogether in an attempt to restore balance and sanity to their lives. For those ready to run screaming from the computer or TV, sit out the election and withhold their vote, I have two words:

Sep 21, 2012A Graceful Exit: Taking Charge at the End of Life

by Claudia Rowe
YES! Magazine

September 19, 2012

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, there will be 19 million Americans over 85, all at high risk of losing the ability to care for themselves or dwindling away due to organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know if she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves. More

Sep 5, 2012Uninformed Consent, Unshared Decision-Making in the ICU

By Barbara Coombs Lee

Imagine yourself the son or daughter of a grievously ill octogenarian. Your mom or dad suffered a catastrophic event and has been in an ICU, barely conscious, for two weeks. You understand organs are shutting down, but you struggle to understand the medical jargon or the purpose of tubes and machines attached to every orifice. You and your family have kept a steadfast vigil at the hospital, and today the doctors called a meeting to talk with the family.

The family is desperate to understand what is happening and learn what lies ahead. The doctor needs the family to authorize a treatment plan. Will you learn how close your loved one is to death? Will the doctor learn their end-of-life wishes? Are there options and difficult decisions to be made? The legal standard for these conversations is that the family consents to treatment after being fully informed of alternatives, risks and benefits of each. The medical standard is that critical treatment decisions are not unilateral, but shared by the patient or surrogate and the doctor.

Sadly, informed consent and shared decision-making, the twin pillars of patient-centered healthcare, aren’t the rock-solid structures we would hope for. They are subtle, fragile fragments, often half-buried and overlooked in a heap of technological rubble. It’s a doctor’s job to dig them up and erect them, and many are not so inclined. That’s the lesson of a new study in the Journal of Intensive Care Medicine.

It is well established that many dying patients endure excesses of torturous treatment in the intensive care units of America. Tubes, machines and other contrivances can take over in clear violation of previously expressed wishes. Advance directives declining such treatments routinely get ignored. Three years ago I blogged about a bloated and misguided medical-industrial complex that tortures patients, and called it a national tragedy. I’m sorry to report not much has changed since then. More

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