End-of-Life Choice, Palliative Care and Counseling

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“Doctor, Please Help me Die”

by Barbara Coombs Lee
May 15, 2013

Dr. Tom Preston, a Compassion & Choices leader in Seattle, chose these poignant words for the title of his new book. They are powerful words, gripping even on paper. Imagine them emerging from the lips of a patient, perhaps one whom the doctor has treated over decades, who is now dying of cancer. They strike right at the core of a physician’s identity, training and moral compass.

Preston knows well that each person, each healer and each caregiver responds to such a request from patient or loved one from the deepest parts of their own authentic being. He begins his book quoting Dumbledore, who in the last Harry Potter book pleaded with Snape to cut his dying short. “You alone know whether it will harm your soul to help an old man avoid pain and humiliation,” the wizard tells his reluctant friend. So it is with every doctor In America. More

Farewell to Booth Gardner

by Barbara Coombs Lee
March 18, 2013

Governor Booth Gardner died last Friday, after enduring the long relentless assault of Parkinson’s Disease. He was 76 years old, and he’d fought the progression of his illness valiantly for more than 20 years.  From 1985 to 1993 he served as governor of Washington and delivered much of lasting value to its people. In 2008, contemplating his own mortality, he brought them an aid-in-dying law and empowered them with the comfort of choice and control over needless suffering.

From September 2006 to November 2008 Booth led the Washington state campaign to pass a Death with Dignity law like the one in effect in Oregon since 1997. I remember well how his leadership emerged.

We had begun to think seriously about launching a Washington campaign for aid in dying in early 2006. With polling, focus groups and brainstorming we had begun to shape a proposed law and name it.  We thought we were the logical leaders. We were veterans of two successful campaigns and three intense years defending Oregon’s Death with Dignity law from the state legislature, Congress, the U.S. Department of Justice and litigants in federal court. Twice we had brought the argument all the way to the U.S. Supreme Court. We felt seasoned and successful.

Unbeknownst to us, Booth Gardner was also thinking about aid in dying, and starting to talk with his advisors and friends about a law to expand end-of-life choice. He thought this could be his final act of public service, and a lasting legacy to the people of Washington.

When we became aware of each other’s efforts, we met in the Seattle office of Compassion & Choices of Washington. Booth had not yet received the brain procedures that would later reverse some of his Parkinson’s symptoms and it was sometimes difficult to understand his speech. Nevertheless, he projected unwavering confidence and abiding good nature. He looked at us, the supposed “experts” seated around the table. Then he jabbed his thumb back over his shoulder with absolute authority, and said, “We’re going to have a campaign, and I want you all to get in line behind me.”  So we did.

Booth was a strong and compelling campaigner. In September 2006 he spoke candidly to attendees at the Annual Conference of Elder Law Attorneys:

Many of you know that I have been struggling with Parkinson’s Disease for the past 15 years and some may think that my interest in an Aid in Dying law is because I’m tired of dealing with it.

Well, it is discouraging at times but I have a lot of plans for the future involving new initiatives in education, new woodworking projects, more trips to watch a grandson’s baseball games and a chance to make new friends – just to name a few of the things that I look forward to in the years to come.

Just the same, my struggles with this disease remind me of my mortality every day.  I understand suffering differently now than I did before my Parkinson’s symptoms began.  I can more clearly imagine myself in the place of people who know they will not get better – that their end is very near – and whose only quality in life is misery.

So, I understand better now why an Aid in Dying law is so important both for people who might use it and for those who look on with compassion as loved ones suffer intolerably through their final days.

Working with Booth on his campaign was a joy and a privilege. His energy never flagged; his spirits never wavered.  He never persuaded the anti-choices folks to see things his way, but his good heart did persuade them of his high regard and good wishes.

He was as principled as he was kind, telling audiences, “While we respect other beliefs, we need to make it clear that we are bringing this proposal because of our own deeply held beliefs that it is the right and compassionate thing to do.”

Thank you, Booth, for your vision, your leadership, and your kindness.

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.”

 

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.