In this issue:

• Terminally-ill woman become first to use Washington's Death With Dignity Act
  

  On a spring evening, in her home, Linda took her prescribed medication with her family, her physician and her dog at her bedside.

• Language Matters-Call for Accurate Language
  

  As society considers important social questions, language is important. Words matter. Reporters and editors often use the term "assisted suicide" to describe a terminally-ill patient's choice to seek a peaceful and dignified death when their suffering has become intolerable. Let the media know that "assisted suicide" is a biased, inaccurate term.

• On My Mind by Barbara Coombs Lee
  

  Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is--simply and courageously--to talk about it. First and foremost, talk to your personal physician. How to begin this conversation?

• Congressman Wants Funding for Doctors and Patients to Discuss Treatment Options

  Oregon Congressman Earl Blumenauer has introduced federal legislation eo encourage doctors to discuss end-of-life choices with their patients. If passed, it would rewqrd health care professionals who discuss patient preferences and all the treatment options available.

• Mainstream Medical and Health Policy Organizations Now Support Aid in Dying

  Through a steady stream of changes, progress happens. In the latest issue of the Harvard Health Policy Review, an article by Compassion & Choices Legal Director Kathryn Tucker documents the growing support for aid in dying.

• Opponents Preview Arguments to Roll Back Montana Protection for Aid in Dying

  A Montana District Court Judge ruled in December 2008 that the Montana State Constitution protects a peaceful death with dignity. The state’s Attorney General and several organizations seeking to limit end-of-life choices have now filed their arguments seeking to overturn the decision. 

• Dignity and Choices
  

  You can now register online for Dignity & Choices, an international symposium on end-of-life advocacy in Washington, D.C. Learn more about the conference and register online at http://www.compassionandchoices.org/symposium.

• In the Media
  

  Media highlights on end-of-life issues.

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Terminally-Ill Woman Becomes First to Use Washingtonians Death with Dignity Act

Compassion & Choices Fights for Patients’ Rights in Montana and Washington

Linda Fleming of Sequim, Washington was stunned last month to receive a terminal diagnosis of advanced pancreatic cancer. “I had only recently learned how to live in the world as I had always wanted to, and now I will no longer be here.” With deep regret and firm conviction, Linda’s life ended May 21st on the terms she chose. She was the first Washington resident to die using the choices offered under Washington’s recently passed Death with Dignity law.

Linda worked with her physician and with Compassion & Choices Client Support volunteers to carefully consider her choices and make her end-of-life decisions. “I am a very spiritual person,” Linda explained, “and it was very important to me to be conscious, clear-minded and alert at the time of my death. The powerful pain medications were making it difficult to maintain the state of mind I wanted to have at my death. And I knew I would have to increase them.”

On a spring evening, in her home, Linda took her prescribed medication with her family, her physician and her dog at her bedside.

Read more here.

President Obama Sparks a Conversation on End-of-Life Choices

Last month, as part of an interview in the New York Times, President Obama told a story and helped start a national conversation about the end of life.

I’ve told this story, maybe not publicly, but when my grandmother got very ill during the campaign, she got cancer; it was determined to be terminal. And about two or three weeks after her diagnosis she fell, broke her hip.

The doctor said Obama’s grandmother, known as “Toots,” might have nine months to live and then continued,

Because of the weakness of your heart, if you have an operation on your hip there are certain risks that — you know, your heart can’t take it. On the other hand, if you just sit there with your hip like this, you’re just going to waste away and your quality of life will be terrible.

And she elected to get the hip replacement and was fine for about two weeks after the hip replacement, and then suddenly just — you know, things fell apart.

The President told the story in discussing the economic questions connected with health care reform. He said there are “some very difficult moral issues” to discuss.

Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else’s aging grandparents or parents, a hip replacement when they’re terminally ill is a sustainable model , is a very difficult question . . . .
Well, I think that there is going to have to be a conversation that is guided by doctors, scientists, ethicists. And then there is going to have to be a very difficult democratic conversation that takes place.

His story and the question he posed have sparked a vigorous response online and in the press. Harvard Medical School Professor Jim Sabin, writing on the blog Health Care Organization Ethics, thanks the President for starting the discussion.

Every doctor and nurse who has dealt with end-of-life care knows that many of the interventions we make are, in balance, harmful and should not be done, and that others could, at best, provide tiny benefits at enormous cost, and should be questioned. These are among the issues we need to understand better and deliberate about.

But Matthew Continetti, a columnist at the Weekly Standard, is concerned.

What's going on here? To me, Obama is laying out the intellectual case for health care rationing while acknowledging the potential human costs of such a policy.

And Donny Ferguson, National Committee Communications Director for the Libertarian Party claims,

In other rationed-care systems like the one Obama proposes, those with serious illnesses and the elderly are the first to be told they basically have a duty to the government to save money dying as soon as possible.

Jay Hancock, a financial columnist for the Baltimore Sun, took the question of rationing care to Dr. Albert Woo, a professor at the Johns Hopkins University's Bloomberg School of Public Health.

“Is it time to start rationing care?" Woo says. "I think we should ration care by whether or not treatments are effective."
Woo thinks doctors can save taxpayers money and show more compassion at the same time by communicating better. Some critically ill patients don't want heroic, expensive measures, but the doctors provide it anyway.

Social commentator Ellen Goodman, writing in the Boston Globe, seems to agree.

But aren't there places at the end of life where ethics and economics, compassion and cost, dovetail rather than conflict?
There are "difficult moral issues" ahead. But is this one of them?

Is a healthcare system that offers "everything" to everyone - hip replacements to terminally ill patients - morally superior? Or suspect? Can't we decide when more is not more?

I won't second-guess decisions in those last weeks of Toot's life any more than I would second-guess my own family's decisions as the avalanche of choices rolled toward us in my mother's last months. But I do think that what our system may need is not more intervention but more conversation. Especially on the delicate subject of dying.

Regardless of costs, was hip replacement really the best option for Obama’s grandmother, wonders Joanne Kenen on the New Health Dialogue Blog.

Did she fully understand the risks and implications, not just while she was in surgery but during the recovery? How well did anyone explain other less invasive options? Who—if anyone—was coordinating her care? Were the various specialists (that may have included oncologist, surgeon, cardiologist, orthopedist, hospitalist and/or internist and who knows who else) communicating and how? Was a pain or palliative care specialist consulted?

On the Blog for America Dr. James Tulsky of the Center for Palliative Care at Duke University Medical Center, writes,

Hospital palliative care programs have been shown to both improve quality and reduce costs of care for America's sickest and most complex patients. They do this not by reducing desired care, but by addressing symptoms, helping patients and families establish appropriate care goals and then coordinating care that meets those goals.

The story of President Obama’s grandmother aroused emotions and a wide spectrum of responses. We are far from agreement on what care is appropriate, affordable or desirable at the end of life and the answer for each individual will be different. As a society, it will be difficult to arrive at a collective response. But we have started the conversation.

On My Mind

by Barbara Coombs Lee

The Conversation

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.--Dylan Thomas, Do Not Go Gentle Into That Good Night

Dylan Thomas’ famous admonition aside, at the appropriate time (and not a minute too soon), most ill and elderly do wish to go gently into that good night. Very gently indeed.
The “rage, rage” we’ve witnessed is not so much at the dying of the light, but at the suffering caused by brutal, invasive and futile procedures all too common in today’s high-tech mode of dying.

Most Compassion & Choices supporters would eagerly bargain away a few days of extended life in an intensive care unit in exchange for final days spent at home, in relative comfort and meaningful communion with those they love. Such folks don’t adhere to the doctrine of redemptive suffering and would rather slip away peacefully if imminent dying would be otherwise prolonged and agonized.

Well, the evidence is in. Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is --- simply and courageously --- to talk about it.

Talk to whom? First and foremost, talk to your personal physician. It’s never too early for this conversation. This March an important study appeared in the Archives of Internal Medicine. A large, multi-institutional study, it evaluated the quality of life at the end of life for people with advanced cancer.

Lo and behold! Those individuals who had discussed end-of-life values and preferences with their doctors experienced significantly less suffering in their final week of life. A significant reduction in intensive care hospitalizations and high technology interventions accounted for this desirable outcome. Not too surprising, the patients who had talked with their doctors, and who experienced a more peaceful, pain-free end of life, also received less costly care than those tethered to the tubes and machines meant to extend their lives.

But one finding is stunning enough to be a game-changer in end-of-life care. For all the suffering they inflicted and all the cost they incurred, the tubes and machines actually bought no life extension. None.

It’s hard to imagine a worse situation for a person dying of cancer --- trapped in an intensive care unit, remote from family and loved ones, suffering through intrusive and painful medical procedures, and living no longer than those who chose to end their lives in hospice, at home, with loved ones at their side.

Start this conversation with your doctor. There’s no reason not to. Unfortunately, your doctor is unlikely to broach the subject, so it’s up to you. You might wonder how to begin this conversation without seeming morbid.

I humbly offer several openers for your consideration:

•    “I just read about a study that found all that high technology at the end of life doesn’t work and just causes suffering. Do you know I wouldn’t want that?”
•    “My relative (or friend or acquaintance) had a terrible death, hooked up to tubes and machines. I think I’d just want to be home with my family. What do you think about a decision like that?”
•    “I love so much about my life --- being active, loving my family. If none of that were possible anymore, I’d like to go out peacefully, without a lot of heroics. Does that fit with your medical philosophy?”

If the conversation reveals a physician seriously out of sync with your values and beliefs, find another whom you feel you can trust to honor your wishes. As we often say, “When you’re dying is no time to find out your core beliefs and your doctor’s are incompatible.”

If you are uncomfortable having this conversation with your doctor in person, broach the subject with a letter. You can download Compassion & Choices’ free “Letter To My Doctor” here and mail it or hand-deliver it to your doctor at your next appointment.

Call our End-of-Life Consultation Service at Compassion & Choices (1-800-247-7421) if you’d like to report on how your conversation went. We’d love to hear from you.

Best of luck.
  

 

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Congressman Wants Funding for Doctors and Patients to Discuss Treatment Options

Oregon Congressman Earl Blumenauer, a long-time supporter of individual choice, has introduced federal legislation to encourage doctors to discuss end-of-life choices with their patients. HR 1898 IH is titled the “Life Sustaining Treatment Preferences Act of 2009,” and if passed, would not only allow health care professionals to bill Medicare for time spent discussing patient preferences, but also encourage discussion about all the treatment options available.

This spring Blumenauer spoke about the problem on the floor of the House of Representatives.

The irony is that the Medicare system will spend thousands and thousands of dollars on intense medical intervention, intense medical activities, but they won’t spend a few dollars to pay a doctor to have a conversation with a patient and the family about what they can expect, what their choices are, and to be able to engage with the patient and the family to decide what they want to have happen.

Blumenauer realized that too little discussion takes place between patients and their physicians regarding end-of-life treatment preferences. As a result there is often no planning for care at the end of life. The all-too-familiar result is that when a crisis does occur, the patient may be subjected to unwanted, futile and often painful medical procedures. He notes that a major impediment to planning for end of life treatment results from the fact that under current law, Medicare does not reimburse qualified practitioners for the time spent having such conversations with their patients.

As Blumenauer puts it “It is the humane, compassionate thing to do. It will help us allocate our health care resources more appropriately to treat what people want, and it will relieve the pressure on the health care system so the default isn’t always the most intensive, expensive interventions that often deteriorate the quality of life in those final days.”

Compassion & Choices is working with members of Congress in both the House and Senate to secure successful passage of this bill.  Please check the Legislative Work page on our web site for updates.

Philanthropist Jane Stephens Comer Introduces Compassion & Choices to Birmingham, Alabama

Gracious Southern hospitality greeted Compassion & Choices President Barbara Coombs Lee as she spoke last month before a group of assembled philanthropists, physicians, writers and prominent community activists at the home of noted philanthropist and patron of the arts Jane Stephens Comer in Birmingham, Alabama. On a beautiful, cool April evening, Ms. Comer opened her stately Birmingham home to a group of close friends that included Dr. Jack Averett, Dr. and Mrs. J. Claude Bennett and Dr. George Whatley, a long-time supporter of Compassion & Choices and its predecessor organizations.

 “We are thrilled to make new friends in Birmingham,” remarked Coombs Lee. “Jane Stephens Comer is a leader in her community, and her strong support of our work is a testament to Compassion & Choices’ importance to a growing number of people all across the nation. The Birmingham circle of support, begun so many years ago by Dr. Whatley, proves that dedication to human liberty at life’s end knows no boundaries.”

Opponents Preview Arguments to Roll Back Montana Protection for Aid in Dying

Documents filed in the landmark Montana aid-in-dying case are revealing the arguments that will be made this summer. Montana District Court Judge Dorothy McCarter held in December 2008 that the Montana State Constitution protects the choice of a mentally competent, terminally-ill patient to choose aid in dying. The state’s Attorney General Steve Bullock appealed to the Montana Supreme Court. Bullock and several organizations seeking to limit end-of-life choices have now filed briefs seeking to overturn Judge McCarter’s decision.

Compassion & Choices Legal Director Kathryn Tucker is co-counsel for the petitioners who brought suit for the right to die on their own terms. With the original decision in their favor, the petitioners have “home field advantage.” In addition to writing the brief for the Respondents, Tucker is coordinating briefs to be filed next month in support of the Respondents.

“What strikes me about the briefs filed by the State and it's supporters,” Tucker said, “is that they were written as if they were frozen in time. Most of the citations to authorities are from the early nineties or earlier.” The arguments that legal aid in dying will threaten vulnerable populations or undermine palliative or pain management care, she says, ignore the evidence from eleven years of experience in Oregon under its Death with Dignity law. That evidence in fact shows that practitioners in Oregon are better aware of palliative care treatment than before and are discussing pain management with their terminal patients earlier than eleven years ago.

She also noted the organizations that filed friend-of-the-court briefs opposing the petitioners are mostly overtly religious or right-to-life organizations. The briefs that will support the right of the appellants to choose aid-in-dying, she said, will represent a broad and diverse set of groups, including advocates for civil liberties, women's reproductive rights, medical professionals, as well as a religious perspective and leading constitutional scholars from University of Montana Law School. “ Survivors will also file a brief,” Tucker added, “Montana residents who want to tell the stories of their relatives who wanted, but were unable to obtain, aid in dying.”

While the legal team pursues the case in the courts, Tucker says, “Supporters who live in Montana should stay vigilant to the way the case is portrayed in the press. Make sure reporters use accurate, value-neutral language and not the inaccurate and biased terminology promoted by our opponents.”

Compassion & Choices has committed substantial resources to this landmark case which seeks to establish that the choice for aid in dying is protected as a personal decision not to be usurped by the State.  All briefs from both sides will be filed by the end of the mid-August. A hearing is expected in the fall.
 

Mainstream Medical and Health Policy Organizations Now Support Aid in Dying

Through a steady stream of changes, progress happens. In the latest issue of the Harvard Health Policy Review, an article by Compassion & Choices Legal Director Katherine Tucker documents the growing support for aid in dying.

Tucker reports that four major national medical professional and health policy organizations last year adopted a policy in support of aid in dying: the American Medical Women’s Association, the American Medical Student Association, the American College of Legal Medicine and the American Public Health Association. What prompted that change, she argues, was a growing body of evidence.

A decade of data now shows how aid in dying is working in the state of Oregon. Opponents of the Dignity Act legislation had argued that such a law would be forced upon the uninsured, the poor, minorities, persons without access to hospice, or disabled persons. The data have disproved this conjecture. In addition, a number of unexpected but significant developments occurred in Oregon following implementation of the Dignity Act. Referral of patients to hospice care increased dramatically, as did physician enrollment in continuing education courses on how to treat pain and symptoms associated with terminal illness.

The increased support from health and medical associations is matched by increasing public support for empowering dying patients with the freedom to choose aid in dying. The Pew Research Group reported in 2006 that 60% of Americans “believe a person has a moral right to end their life if they are suffering great pain and have no hope of improvement,” an increase of nearly 20 percentage points since 1975.

Tucker cautions that the important American Medical Association has a long, well-known history of being slow to adopt policies reflecting changing societal norms. But as the steady stream of evidence and changes build, the trend in policy among mainstream medical and health policy associations is clearly in favor of supporting this compassionate option.

Read more here.