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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.

Dec 6, 2012What Doctors Need to Learn About Death and Dying

by Karen M. Wyatt, MD
Huffington Post
December 6, 2012

“The old man and the young woman sat across from one another stiffly perched on plastic chairs, staring down at the floor — doctor and patient. The tension in the room, exaggerated by the silence between them, was almost unbearable. Then the patient, stroking a trembling, emaciated hand across a hairless scalp, spoke haltingly, “Doctor, promise me I’m not going to die.”

According to a recent post in the New York Times by columnist Jane Brody, this type of interaction with a terminally-ill patient creates occupational distress for many doctors who are not equipped emotionally to handle such a difficult situation. She states that doctors who are unable to cope with “their own feelings of frustration, failure and helplessness … may react with anger, abruptness and avoidance” toward their patients who are dying. When this occurs, doctors may recommend futile treatments to patients at the end of life because they cannot connect with those patients on a human, suffering level and have nothing else to offer them.

The article touts mindfulness meditation, a practice recommended by palliative care specialist Dr. Michael Kearney, as a solution for discontent and disconnected doctors. I wholeheartedly agree that mindfulness meditation can be a very helpful practice for calming anxiety and learning to be present. However, I believe that this problem — doctors who find themselves unable to cope with perceived failure when a patient is dying — requires a deeper and more fundamental solution: Doctors need a new understanding of death and, therefore, life. 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

Jul 18, 2012RIP Gus Reichbach, a true champion for justice

Our friend Gus Reichbach died this week. We at Compassion & Choices met him about a year ago, when he was eager to tell the story of his battle with pancreatic cancer. He had already survived more years of brutal cancer treatment than one would think possible. In spite of weakness and pain he still dressed smartly and took his place on the New York judicial bench each day. Dedicated to the justice system, he preferred to tackle the pressing matters at court than succumb to the malignancy attacking his abdomen.

Gus was a campaigner for social justice in many arenas, and as his life waned he adopted two new passions for his advocacy voice. One was medical marijuana, to which he attributed his appetite, strength and longevity. The other was end-of-life choice, which he hoped to exercise if death became imminent and suffering intense. He visited the Dr. Oz show with us, expressed his view on aid in dying and displayed his characteristic dignity and intellect. Who could argue with such a clear, compelling and compassionate mind?

Goodbye Gus. You were a gift to humankind, a force for justice and an uncommonly courageous man.

Jul 9, 2012Death Phobia Prevails

Hospice and Palliative Care are “Not About Dying”

Last week’s “Heights of Compassion; Bridges to Choice” Conference in Chicago was a stunning success. Participants relished the opportunities to gather information and gain tools for personal empowerment and community activism. Several speakers spoke to our society’s reluctance to acknowledge death, and made the same point in different ways.

Teacher and author Stephen Jenkinson called our society “death phobic and grief illiterate,” with healthcare professionals among our most vigorous enablers. He accused palliative care and hospice professionals of predictably “catering” to death phobia whenever it shows up. I spoke of the marketing to seniors: what I called a “sex on the golf course” message.

As if on cue, articles appeared immediately following the conference to prove our point. On July 3^rd the Associated Press reported on hospices disavowing their role in dealing with end-of-life experiences and losses.

Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York told the reporter hospice isn’t about tending to the dying at all. No, “we come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.” An AARP blog reported gleefully that this is “just the beginning,” as hospices “diversify their services” in preparation for the eventual needs of aging boomers

One of our conference plenary sessions featured a dialogue between Rebecca Kirch from the American Cancer Society and the Center to Advance Palliative Care (CAPC), and Compassion & Choices board member David Muller. David chairs the Medical Education department at Mount Sinai School of Medicine and attends at the Hertzberg Palliative Care Institute. The topic was reframing the national conversation from “death and dying” to “quality of life.”

Rebecca’s organization wants more patients to access palliative care. They commissioned public opinion research to give the palliative care community a roadmap to communicate more effectively with consumers and policymakers on the benefits and future direction of their field. Unsurprisingly they found people shy away from being reminded of their mortality. Apparently the CAPC decided the best plan is to disavow any real association with, or focus on, the end of life. Her presentation described advantages of the new, upbeat goal of lifting the “quality of life” throughout an illness, from diagnosis to … well, to something “not death.”

David followed Rebecca’s talk with an astute analogy. He described a practice among some established physicians of rebuking insurance coverage and treating only patients who pay with cash. This alarming behavior, he said, was a growing trend in New York. These physicians built their practices on healthcare insurance payments, only to cast insurance contracts aside once they assembled sufficient loyal and wealthy patients. They owe their careers and livelihood to insurance, but outgrew their dependence on it.

David’s point is that palliative care as a medical specialty grew from hospice, which arose to meet the needs of patients facing the end of life. Hospice promised not to abandon these patients or torture them with fruitless treatments. They declared dying patients deserve care aimed at comfort, not cure. But now, as some doctors turn their backs on insurance, some hospices and palliative care leaders turn their backs on death and dying. They can’t be bothered with the arduous task of helping America overcoming its death phobia and grief illiteracy. How much easier to take the quick gratification and join the phobic chorus.

Twenty years ago there was no such thing as medical accreditation in palliative care. Death and dying brought palliative care to the dance of medical specialties. Now that palliative care doctors have learned the steps, they believe they deserve a more attractive dance partner. First palliative care left death standing against the wall. Now hospice looks to do the same. Who will ask death to dance?

We at Compassion & Choices will, of course. Because we have learned over and over that only death — only an acute awareness of our mortality — can teach us the joyful, authentic, intensely human dance of life.

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