CONTACT: Sean Crowley, 202-550-6524
scrowley@compassionandchoices.org

Politics Shift as Lawmakers Embrace Nationwide Support for End-of-Life Choices

(Washington, D.C. – May 13, 2013) The nation’s leading end-of-life choice advocacy group, Compassion & Choices, praised the Vermont legislature for becoming the first legislative body in the nation to approve death-with-dignity legislation. Gov. Peter Shumlin has vowed to sign the bill into law.

“This historic legislative victory proves that the aid-in-dying issue is no longer the third rail of politics. In fact, it’s a winning issue on which Gov. Shumlin campaigned,” said Compassion & Choices President Barbara Coombs Lee, an ER and ICU nurse and physician assistant who co-authored the nation’s first Death-with-Dignity law in Oregon and was a senior advisor for the nation’s second Death-with-Dignity law in Washington state, both approved by ballot initiatives. “We congratulate Patient Choices Vermont for its leadership of this multi-year campaign. Their success shows aid in dying has become a legislative winner.”

“Legislators now are embracing the high margin of public support for end-of-life choices nationwide,” added Coombs Lee.  “This bill’s passage should enable legislatures in Massachusetts, New Jersey and other states that are considering aid-in-dying bills to approve them.”

The Vermont bill provides criminal, civil and professional protections for physicians who prescribe medication to mentally competent, terminally ill patients that they can ingest to achieve a peaceful death.  It has requirements similar to the Oregon and Washington laws, but the Vermont requirements would expire after a 3-year period and then professional practice standards would govern the practice of aid in dying.

“Professional practice standards have successfully governed aid in dying in Montana for three years, and for the past two years in Hawaii,” said Compassion & Choices Legal Affairs Director Kathryn Tucker, who testified before both the Vermont House and Senate in favor of the bill and was co-counsel in a landmark case, Baxter v. Montana, in which the Montana Supreme Court ruled in 2009 that the public policy of the state supports mentally competent, terminally ill patients being able to choose aid in dying. “Professional practice standards guide all of medicine and it is appropriate for aid in dying to be governed in this manner.”

Most states ban physician-assisted death, but a movement is growing to give terminal patients the right to choose their fate.

Dick and Ginny Walters envision a new approach to dying for Vermont residents: They want terminally ill patients with a prognosis of less than six months to live to have the right to request and take life-ending medication.

The Shelburne, Vt., retirees — he’s 88, she’s 87 — say they are both healthy and fit. They have devoted the past 10 years to the cause, meeting with supporters in their living room to track legislation — including the bill “Patient Choice and Control at End of Life.” It passed the Vermont Senate in February and goes to the House this month.

Although assisted dying is illegal in most states and opponents have been fighting proposals for the past 15 years, support is growing in Vermont and other parts of the Northeast. Connecticut and New Jersey legislators are also examining measures.

“It makes ultimate sense to people who have lived their lives in an independent way and don’t want to be reduced to an infantile existence and having other people make decisions for them,” Dick Walters says. “It’s taken us a long time, but we think Vermont will do this now.”

Vermont would be the first state to pass a doctor-assisted-death bill through the legislative process. Oregon and Washington voters passed similar bills in voter referendums. Massachusetts voters defeated a measure, 51% to 49%, in November.

“We may have lost this time in Massachusetts, but we won in the region,” says Barbara Coombs Lee, president of Compassion and Choices, a non-profit group dedicated to protecting the rights of the terminally ill. “I think the movements in the other states are evidence of that. Vermont is close to passing. In subsequent efforts, Massachusetts will have a leg up.”

Proponents of the Massachusetts measure were outspent 5 to 1 by religious, medical and disability groups, including the Roman Catholic Church, says Coombs Lee. Cardinal Sean O’Malley of Boston said in a statement after the vote that “we can do better than offering them the means to end their life.”

Walters says the Vermont mind-set is different: “Vermonters have a strong belief for respecting each other’s beliefs.”

When his time comes, Walters says, he doesn’t know whether he’d choose to end his life, but his father asked him for help “and it wasn’t legal to do it. It was really hard on me to not be able to help him. I’ve been bothered a long time by his suffering.”

He says a group of Vermont friends, including many retired physicians, got the idea to organize after Oregon passed the first referendum allowing physician-assisted dying in 1997. Oregon’s law went into effect in 1998, and a similar law went into effect in in Washington in 2009.

The Oregon law requires a patient to get two physicians to say he or she is terminally ill (expected to die within six months), to be mentally competent, an adult 18 or older and a resident of the state. The patient has to be physically able to swallow the medication; someone else can’t administer it. The written request for the medication must have two witnesses, one of whom cannot be an heir, and the patient must also make two oral requests.

“There are two waiting periods,” says Peg Sandeen, executive director of Death With Dignity, an advocacy group that helped write the laws. “The person is certain about what he wants.”

Sandeen says when the U.S. Supreme Court ruled 6-3 in favor of Oregon voters in 2006 the ruling paved the way for other states to create their own laws.

But fights continue: In Montana, a bill is pending that calls for imprisoning and fining a person “who aided or solicited a suicide.” The Montana Supreme Court ruled in 2008 that a state law protects doctors from prosecution for helping terminally ill patients die.

Physician Diana Barnard, a hospice and palliative care doctor in Weybridge, Vt., says “citizens are telling us they want this bill to pass. My professional responsibility is to supply the medication.”

Diana Barnard, a physician, says, “Recognizing that the end of your life is coming is important for so many reasons.”(Photo: Handout)

She says most patients want to know when they’re dying, but most doctors don’t know how to have that conversation.

“Recognizing that the end of your life is coming is important for so many reasons,” she says. “You get a chance to say goodbye to people, have closure on big issues. I always ask patients: ‘If time were short, what would be important to you?’ It’s criminal to not let people do this.”

Another part of the Oregon law requires the Health Department to track the number of people who request the medication, those who take it, and the doctors involved. In 2012, 115 requested it, a record number. Among that group, 77 took it and died. Sixty-one doctors filled orders for medications, one fewer than in 2011.

Dick Walters isn’t surprised more patients didn’t take the medication they requested.

“Just having the choice and knowing the medication is available can make a huge difference,” he says. “I think this thing will change how people talk about death and improve end-of-life care.”

Even in hospice care, when patients have stopped taking medical measures to prolong life, someone else administers the medication that helps control pain and eventually aids in ending life.

“That can leave an enormous amount of guilt on the family member,” Coombs Lee says.

“Laws like the one in Oregon relieve the family of the responsibility. It empowers the patient to be in control — to let the family be there, and say ‘Hold me while I do this.’ “

We have had great success in this year’s legislative session in Connecticut with the introduction of “An Act Concerning Compassionate Aid in Dying for the Terminally Ill“.

The next step is a public hearing, where we all must make our voices heard. That hearing will take place:

Wednesday, March 20, 2013 10:30 a.m.
Legislative Office Building — Room 1D
300 Capitol Avenue, Hartford

The proposed Connecticut law is similar to laws passed in Oregon and Washington state. It offers dignity at the end of life and gives terminally ill patients in great pain the choice to ease and end their suffering. The law includes key safeguards: The patient must have six months or less to live and be deemed mentally competent.

It guarantees we — not the government — will make our own end-of-life decisions. Furthermore, as we know, “Death with Dignity” laws have worked without abuse with the same safeguards the Connecticut law would have.

BUT we still have a lot of work to do.

Right now, we want legislators to hear from Connecticut citizens like you. If you can attend the hearing, contact Tim Appleton today at tappleton@compassionandchoices.org or by calling 860.922.1988 to help send a message to legislators during the public hearing.

We know our opponents will be there, so please come show your support as well.

You can also help by following this link to contact Connecticut lawmakers. It’s quick, easy and impactful!

Aging in America Conference panel sponsored by the Compassion and Choices: “What is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?” Patient-centered care should not include unwanted medical treatment and unnecessary suffering. Yet millions of Americans with advanced illnesses or who are terminally ill:

• Suffer needlessly from undertreated pain and other agonizing symptoms;
• Undergo pointless and costly invasive tests and treatments, often in their last days and hours; and
• Have their treatment preferences or advance directives ignored or overridden by healthcare professionals and others.

Why:   

A new study published in Feb. in the Journal of the American Medical Association examining Medicare claims data found that between the years 2000 and 2009 treatment in acute care hospitals decreased while the usage of intensive care units (ICU) and healthcare transitions the last month of life increased. An accompanying Journal of American Medical Association editorial, “Changes in End-of-Life Care Over the Past Decade More Not Better,” concluded: “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Who:  

Mickey MacIntyre, Chief Program Officer, Compassion & Choices (read his testimony about how unwanted medical treatment at life’s end causes needless costly suffering before the Institute of Medicine’s Committee on Transforming End-of-Life Cares);
Lynn Feinberg, MSW, Sr. Strategic Policy Advisor, AARP Public Policy Institute;
Brian Lindberg, MMHS, Exec. Dir., Consumer Coalition for Quality Health Care;
Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategies Inc.

Where:

Crystal C (West Tower/Green Level), Hyatt Regency Chicago, 151 E. Wacker Dr.

When:  

Friday, March 15, 1pm-2pm CT. If you cannot attend panel but want an interview Tuesday (March 12) Wednesday (March 13), Thursday (March 14) or Friday (March 15) with Compassion & Choices Chief Program Officer Mickey MacIntyre, please contact Sean Crowley: 202-550-6524, seancrowley57@gmail.com.

How:   

If you want to attend panel, but have not registered yet for the Aging in America Conference, please contact Jutka Mándoki: jutkam@asaging.org, 312-239-4834.

This Election Day, Massachusetts is poised to approve the Death With Dignity Act. “Death with dignity” is a modernized, sanitized, politically palatable term that replaces the now-antiquated expression “physician-assisted suicide.” Four polls conducted in the past couple of months have shown strong support for the ballot question, although a well-funded media blitz by the opposition is kicking in during the final several weeks and may influence voter opinions.

Oregon’s Death With Dignity Act has been in effect for the past 14 years, and the state of Washington followed suit with a similar law in 2008. Despite concerns of skeptics, the sky has not fallen; civilization in the Northwest remains intact; the poor, disenfranchised, elderly, and vulnerable have not been victimized; and Oregon has become a leader in the provision of excellent palliative medicine services.

But the Massachusetts ballot question has the potential to turn death with dignity from a legislative experiment into the new national norm. The state is the home of America’s leading medical publication (the New England Journal of Medicine), hospital (Massachusetts General), and four medical schools (Harvard, Boston University, University of Massachusetts, and Tufts).  Passage of the law would represent a crucial milestone for the death with dignity movement, especially since 42 percent of the state is Catholic and the church hierarchy vehemently opposes assisted dying. Vermont and New Jersey are already entertaining similar legislature, and if the act passes in Massachusetts, other states that have previously had unsuccessful campaigns will certainly be emboldened to revisit this subject.

The American right-to-die movement began in the 1980s and 1990s with Derek Humphry’s book, Final Exit, and his organization, the Hemlock Society. It was a reaction to a wave of technological advances, including antibiotics, antifungal medications, ventilators, dialysis machines, cardiopulmonary resuscitation, organ transplantation, and intensive care units. Death appeared to be on the run, cure was truly possible, and patients were politely requested to be quiet and allow physicians to heroically perform miracles. And that is when Dr. Jack Kevorkian—the bad boy of medicine—appeared on the scene.

Kevorkian was a revolutionary. He was beloved by patients and their families because of his gutsy intention to overthrow the medical establishment’s prevailing ethos and hubris about dying. Clad in his nerdy, light-blue cardigan sweater, Kevorkian paraded in front of the cameras to show off homemade suicide gadgets and the Volkswagen van he occasionally drove on house calls to help suffering people end their lives. Before receiving an 11-to-20-year sentence for the second-degree murder of Thomas Youck, a 52-year-old Michigan accountant who suffered from amyotrophic lateral sclerosis (Lou Gehrig’s disease), Judge Jessica Cooper said, “You had the audacity to go on national television, show the world what you did and dare the legal system to stop you. Well sir, consider yourself stopped.”

So let’s fast forward to December 2007, when Cody Curtis was diagnosed with cholangiocarcinoma. This is an unusual and deadly cancer of the bile duct, the tube that runs through the liver. Depending on the size of the tumor and whether it has spread throughout the body, patients with this cancer are offered surgery, chemoradiation, and sometimes a liver transplant. Even with aggressive treatment, however, cholangiocarcinoma is usually a fatal diagnosis.

On a website called How We Die, Cody wrote with characteristic brio and wit:

It’s interesting how I was diagnosed—for my 52^nd birthday I had gotten four, count them, four boxes of chocolate. And I ate them all. Afterwards I felt (deservedly) awful. I looked up my symptoms on the Internet and decided I was having a gall bladder attack like my father had earlier that year. It was a Saturday night so I didn’t want to go to the emergency room.

But I thought it was really weird, so a few weeks later I went in to see the doctor. She ordered an ultrasound. When I went back to her office to get the results, she looked at me and burst into tears. She said, “Your gall bladder’s fine, but you have a big mass in your liver.” The tumor was roughly the size of a grapefruit.

After Cody’s primary care physician calmed down, she discussed the implications of the finding and referred her to a local oncology surgeon, Dr. Katherine Morris—whom Cody and her family came to know as Dr. Kate.

Cody’s postings about her illness remained upbeat but realistic:

The good news was the location of the tumor made a resection of my liver possible. Your liver regenerates and within six weeks you have a new liver. I had the first surgery, which cut out about 60 percent of my liver. But there were complications and I ended up in the hospital for 50 days. I couldn’t walk. I couldn’t feed myself. My daughter lives in Washington D.C. She visited for a week and I didn’t know she was there. And a year after the original surgery, the cancer came back, metastasized to the liver, lungs, and lymph nodes.

When Cody and Dr. Kate met for the first time, the surgeon was 39 years old. During the preceding three years, she had established a vibrant solo private practice based in Portland, Ore., while also helping run a research and tumor banking program at a tertiary care center. She was happily married and highly satisfied with her professional life.

When I write medical stories, I routinely ask people to describe themselves and find that most physicians become flustered when asked this question. Although trained observers, doctors spend little time looking in a mirror or wryly considering their own appearance. They are no more or less narcissistic than the general public but rarely manage to put together a coherent description of themselves—let alone one that contains humor and modern cultural references. So I was delighted when Dr. Kate immediately responded: “I am hopeless at this, but will suggest, instead, a series of words to consider and words to avoid.” Among the words and phrases to eschew were “stout, stumpy, Rubenesque, jolly, looks like Austin Powers minus the chest hair.” Among those worthy of consideration are “a less anorexic Angelina Jolie, statuesque, willowy, serene, poised.” She continued: “I’m 5’4″; have dark, shoulder-length hair; kinda hazel eyes; and teeth I should have had straightened as a kid, but refused to have braces.” This was followed by the admission that, “I’ve a tendency to be willful!”

Dr. Kate grew up in a bucolic setting on the outskirts of Olympia, Wash., in a home that abounded with horses, cats, and dogs. One of her earliest lessons was that you don’t allow animals to suffer. She was raised as a Catholic and attended parochial school through eighth grade. She learned other lessons: People are responsible for themselves and their bodies, and autonomy is a cherished ethical principle to always be respected. Dr. Kate moved to Oregon to attend medical school and complete a surgical residency. She then traveled to New York City and Memorial Sloan-Kettering, where she did a surgical oncology fellowship focusing on cancers of the liver and pancreas. Portland, however, is not an easy city to leave, and she returned to establish a private practice and conduct clinical research. When Cody came to see Dr. Kate, she was one of a select group of surgeons specializing in the treatment of this particular kind of cancer.

Thanks to Cody’s case, Dr. Kate is now among the pantheon of a growing number of medical professionals who have been transformed by death with dignity. Perhaps it takes the dramatic actions of a flawed advocate like Dr. Jack Kevorkian to catalyze change that leads to the appearance of more reasonable and likable physician reformers. Physicians of this new generation do not seek out or necessarily welcome the role, but, having accepted it, they are irreversibly changed. Most are modest, highly intellectual, and intensely private professionals who are drawn to medicine because it offers a challenge and an opportunity to help relieve distress. Most are workaholics who accept the drudgery and frequent frustrations of the profession because it is occasionally interrupted by the incomparable pleasure that comes with vanquishing an illness, ameliorating suffering, and saving a life. Few of these physicians would ever have dreamed that their greatest accomplishment might entail helping patients to die. Not one of them would have imagined him- or herself becoming a death-with-dignity advocate.

These doctors defy the deeply ingrained taboo against death and they are soft-spoken combatants in this professional and cultural war. The media has briefly illuminated a few of them. Dr. Timothy Quill is a bioethicist and primary care physician who wrote a provocative New England Journal of Medicine article that is death with dignity’s literary equivalent of Harriet Beecher Stowe’s Uncle Tom’s Cabin. The first-person essay resulted in a grand jury investigation (he faced the possibility of indictment for murder or manslaughter), and it led to his eventual role as a plaintiff in a landmark U.S. Supreme Court case. Tim is this year’s president of the American Academy of Hospice and Palliative Medicine.

Dr. Marcia Angell is another member of this group. She was the first female editor of theNew England Journal of Medicine and has recently been attracting attention in her capacity as an eloquent spokesperson for the Massachusetts ballot question campaign. She fervently believes that it is vastly preferable for dying people to be offered a legal option of death with dignity than to secretly, fearfully, and often brutally kill themselves.

And then there is Dr. Kate Morris. At the time Cody became her patient, filmmaker Peter Richardson, a young native Oregonian, was absorbed by his state’s decision to legalize death with dignity. Cody eagerly agreed to participate in his film, and Dr. Kate grudgingly acquiesced. Both women poignantly described to Peter the aftermath of the surgery, the complicated recuperation, the resumption of a vibrant life, and finally the recurrence of cancer. In the end, the camera respectfully hovered outside of Cody’s bedroom, where her family gathered and where she ingested the lethal dose of barbiturates that allowed her the death with dignity she desired.

When I interviewed Richardson, he was still in shock that How To Die in Oregon had just received the Grand Jury Prize Documentary Award at the 2011 Sundance Film Festival. Since then, it has been broadcast on HBO and is contending for an Emmy. At the festival, Dr. Kate shared a few intense minutes in the klieg lights with Cody Curtis’ widower and her adult children, as they nervously answered audience questions.

Before moving to New Mexico for an academic position, the surgeon helped one more patient to use Oregon’s Death With Dignity Act. She has since volunteered to be the lead physician plaintiff in a case challenging New Mexico’s law against assisted dying.
For people like Cody Curtis and Dr. Kate, death with dignity is not incompatible with palliative care, and data show that 90 percent of Oregon patients who choose assisted dying are simultaneously enrolled in hospice, and 95 percent die at home. Death with dignity epitomizes self-determination at a moment when palliative medicine bumps up against its limits, when patients are undergoing irremediable existential suffering and are in the process of losing everything that is meaningful to them.

After her patient’s death, Dr. Kate concluded, “I think Cody taught me that ‘first, do no harm,’ is different for every patient. Harm for her would have meant taking away the control and saying, ‘No, no, no! You have got to do this the way your body decides, as opposed to the way you as the person decides.’ ”

Dr. Kate’s epiphany goes to the heart of the dilemma faced by physicians who are requested to assist in hastening dying. Most have been taught to adopt a passive stance and resist doing something rather than risk causing more harm than good. The ethical principle of non-maleficence has been a rationale for feigning deafness, and for ignoring or refusing to participate in a death with dignity. However, Dr. Kate has realized that another, more important principle—respect for patient autonomy—should supersede in these cases. Whether or not you would consider assisted dying as a personal option, we should allow others to exercise their preferences. It is time we became pro-choice at the end of life.