End-of-Life Choice, Palliative Care and Counseling

Barbara Coombs Lee

Legal Debate Over Aid-in-Dying Legislation

Tuesday, March 5, 2013

The Diane Rehm Show on WAMU 88.5 | NPR

Montana’s House of Representatives passed a bill that could imprison doctors for assisting in suicide. Legislation is pending in other states to make it legal. A panel joins Diane to discuss the legal and political debate over end-of-life issues.

Guests

Barbara Coombs Lee
president, Compassion & Choices, and chief petitioner of the 1997 Oregon Death with Dignity Act. She was a nurse and physician assistant before becoming a private attorney.

Thaddeus Pope
director of the Health Law Institute and associate law professor at Hamline University School of Law.

Joanne Lynn
geriatrician, hospice physician and director of the Altarum Institute Center on Elder Care and Advanced Illness.

Krayton Kerns
doctor of veterinary medicine and Republican member of the Montana Legislature.

 

Listen Here: http://thedianerehmshow.org/audio-player?nid=17396

 

 

Intense Treatment in the Last Month of Life Is Rising

by Barbara Coombs Lee
March 4, 2013

One Question Can Stop End-of-Life Torture

Several weeks ago Brown University’s Dr. Joan Teno and her Dartmouth colleagues published a study on end-of-life care in the Journal of the American Medical Association. They looked at the records of almost 850,000 Medicare beneficiaries who died between 2000 – 2009, and first found good news on hospice utilization. A closer look revealed the bad news. I believe healthcare consumers could escape the intractable problem they discovered with one timely question.

First the good news: The percentage of our nation’s elders dying under hospice care doubled in ten years, from 21.6% to 42.3%. If patients close to death received more of the comfort-directed care of hospice and less of the highly invasive, painful and burdensome treatment of intensive care units (ICUs), that would be very good news indeed. Needless suffering would have diminished.

But when the investigators looked at the period immediately preceding referral to hospice, they found a picture of torture and chaos. More people than ever received intense interventions, and the median number of disruptive moves from one institution to another grew from 2.1 to 3.1. ICU stays in the last month of life increased from 24% to 29% and ventilator use also increased, from 8% to 9%. Very sick elders, just weeks from death, are still subjected to intensive and aggressive treatments. Doctors are apparently using more machines and tubes than ever, redoubling efforts to turn around a final medical crisis or forestall death.

The data indicates that when doctors finally accept the inevitable, the end is imminent. 28% of patients received the comfort and care of hospice less than four days. This is a travesty. I would categorize such a last-minute, desperate transfer of a patient to hospice services as “dumping.”  These unfortunate patients didn’t receive comfort care instead of medical tortures. They received the maximum allotment of technological interventions and then got shunted to hospice to die.

Such transfers come too late for a family to realize the enormous relief and peace of mind that comes with knowing a loved one’s comfort comes first.  It’s too late for hospice social workers to do a thorough assessment of a patient and family’s social, emotional and spiritual needs. It’s barely enough time to administer and titrate medications for maximum relief of pain, anxiety, breathlessness and other distressing symptoms.

I would venture a guess that most of the patients in this study who suffered stays in an intensive care unit immediately before transfer to hospice had advance directives. (61% of such patients do.)  I would further guess that most of those advance directives said the patient wanted to limit life-sustaining therapies like CPR, ventilators and other rescue treatments if they were terminally ill. (Most people who fill out advance directives decline interventions if they are dying)

What is going on here? Why were these dying patients treated in violation of their stated preferences and the instructions on their advance directive?

Here’s one reason: The advance directive says, essentially, “no life-sustaining treatment if I am dying.”  But left to their own habits and sensibilities, doctors define “dying” very, very narrowly. So long as some technology, futile or not, remains in Medicine’s bag of tricks, the patient is not “dying.” In this sense, doctors are like a procrastinator putting a task off until tomorrow and believing that, technically speaking, “tomorrow” never comes.

Educators and health policy gurus have spent decades and hundreds of millions trying to turn physician behavior around. This latest study reveals not only abject failure, but lost ground as well. It’s up to the people — those approaching the end of life and those who love them — to prevent medical habit from stealing a peaceful death.

We can change medical habit by applying a reasonable definition of “dying” for ourselves.  We can save ourselves from torture by getting doctors to admit when we are likely to die within 6 months with or without treatment, or are unlikely to survive a hospitalization. That admission should give force to patients’ preferences for the end of life, or to the advance directive if they cannot speak.  But it’s up to us to call the question.

I believe we must muster the courage to ask directly, “Doctor, am I dying?” “Is my mother, father, sister, spouse, or other loved one — dying?”  “Has the time of our careful planning arrived?  Shall we avoid the trap of acting as though the inevitable will never come? Because if scientific calculations say I am likely to die during this hospitalization, I would rather die at home. If the odds are intensive care offers nothing but prolonged suffering, please refer me to hospice now.”

Facing pointed questions like this, doctors will almost always tell the truth.  They are very bad at starting a serious conversation about the end of life, but they can usually participate if they know a patient or family takes end-of-life planning seriously.

Sadly, we must take it upon ourselves to avoid being one of Dr. Teno’s dismal statistics. If the end of a battle with cancer, chronic lung disease or dementia seems to be approaching, prepare yourself to ask the crucial question BEFORE a hospital admission.  Ask it in the medical office. Ask it in the emergency room. Practice asking it before you actually have to utter the words.  “Doctor, am I dying?”

 

Oh, Freedom

by Barbara Coombs Lee
February 26, 2013

Michael Morgan, founder and Executive Director of the African American Music Foundation, visited my church this week to celebrate Black History Month. During morning service his thrilling bass voice highlighted an inspiring memorial to Paul Robeson. That afternoon he delivered a recital and lecture on spirituals to an overflow crowd.

I’ve been humming these spirituals and mulling their words ever since. Mr. Morgan is charismatic and riveting and he adores spirituals. As he explained, this is not only African American music. It is American music — never composed, but arising organically from the depths of human experience and longing.

Often beginning in woe but always ending in joy, the words of spirituals express struggles against injustice, oppression and the sadness of mortality. So many of them, like “Swing Low Sweet Chariot” and “I Stood on the River of Jordan,” give voice to our hopes and fears in the face of death. They arch beyond American slavery to express hard truths about the burdens every human bears and how we cope.

 

Oh, Freedom

Freedom, oh freedom,

Oh freedom over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

No more moaning, no more moaning,

No more moaning over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

There’ll be singin’, there’ll be singin’,

There’ll be singin’ over me

 

And before I’d be a slave

I’ll be buried in my grave

And go home to my Lord and be free

 

That song is about all kinds of slavery, Mr. Morgan said. “Think about it. There’s a whole lot of things you can be slave to in your life.”

Indeed there are.

Increasingly, people feel in jeopardy of being slaves to medical technology and an imperative to apply all that is available. As awareness grows, people grow leery of the assumption they would choose to eke out every second of mortal existence, even as terminal disease ravages the body and suffering exceeds the ability to bear it.  Often slavish devotion to prolongation of life means only prolongation of suffering.

In his book, Facing Death, my friend Reverend Paul Smith reminded us that death is not the worst thing that can happen to a person.  When we act as though it IS the worst thing, we can fall victim to much worse.

Choices mean freedom. Freedom from all that may be worse than being “buried in my grave.”

 

Death with Dignity Act Wins Approval in New Jersey Legislative Committee

The Assembly Health and Senior Services Committee today passed the New Jersey Death with Dignity Act. The bill, which now goes to the full Assembly for consideration, would empower terminally ill adults to receive physician-prescribed medication giving them the choice of a peaceful death.

Barbara Coombs Lee, President of Compassion & Choices, hailed the vote as a victory for the movement for choice at the end of life. “We applaud the Assembly members who voted today on behalf of their constituents, and resisted the appeals of special interests,” she said. “People want and deserve something to say about how they might meet an imminent, inevitable death from terminal illness. This is true in New Jersey as it is across America.”

The bill, one of at least six moving in state legislatures across the country now, would give explicit permission to New Jersey doctors for aid in dying, the medical practice defined in Oregon’s Death with Dignity Act. Five committee members voted in favor of the New Jersey measure, with two opposed; there were two abstentions.

More

Potent 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 21st 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.