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.

I recall hearing Dr. Peter Goodwin, Compassion & Choices’ leader and dear friend who died last March, describe how his “blood ran cold” the first time he heard these words. He responded to his patient he could not, but spent the remainder of his life regretting that answer.

Last month Dr. Eric Kress testified to the Montana legislature that when he refused the first patient who asked for his help in dying, the patient reacted in disgust and called him a coward. Thus began his own soulful rumination and his decision not to abandon subsequent patients who asked for his help. “What kind of man am I?” he asked himself. “What kind of doctor am I?”

Preston writes from his long and passionate interest in how doctors respond to this plea. By extension, he is also vitally interested in the historic and potential relationship between the field of Medicine and patients who yearn for choice and control in their dying. Today, it’s mostly a dysfunctional relationship. But it has not always been so, and this book may well help heal the dysfunction.

Preston is a fine writer, and a splendid historian. I greatly enjoy his reaches into ancient Greece and Medicine’s dawn as a profession. In one enlightening chapter he traces the transformation of medical oaths, “From Hippocrates to Lasagna,” to demonstrate how politics, religions and accidents of history influence the words and meanings that endure, even when at odds with ancient precepts or practices. Personally, I’ve always been fascinated to observe that sometime in the course of history the caduceus, symbol of Mercury, god of thieves and business, came to replace the staff of Asclepius, son of Apollo and the first mortal healer, as the symbol of Medicine. (That’s right, the patron god of financial gain stands as the profession’s symbol in modern times.)

Another of Preston’s great contributions is his concentration on “patient-centeredness” as the mark of excellent care. Preston acknowledges that his colleagues may pay lip service to the term, while actually delivering “physician-centered” service. Therefore he takes care to advocate a “meaningful” patient-centered approach. One of the speakers at this year’s TEDMED conference noted that even “patient-centered care” can mean that professionals circle the patient and impose a one-way dialogue.

Non-physician readers will find in Preston’s words the reassurance, courage and tools to approach their doctors with legitimate requests arising from their experience in health and in decline. Physician readers will find compassion and gentle guidance in adopting an open and responsive attitude toward the needs of their dying patients. Physicians across the nation are examining their position on intention and assistance in dying, and this book is bound to help.

by Compassion & Choices staff
May 2, 2013

TV Host Calls End-of-Life Choice for Terminally Ill “Personal Decision”

(Washington, D.C.) Emmy Award-winning television host Montel Williams advocates for end-of-life choice, including aid in dying, in the spring issue of Compassion & Choices Magazine. Williams, who revealed in 1999 that he has multiple sclerosis (MS) and is an active healthcare advocate, expressed support for the right of terminally ill people with unbearable suffering to control the time and manner of their death.

Appearing on the cover and in the magazine’s “Voice of Choice” column, Williams states, “I do not believe people should be deciding what level of pain other people should endure, especially knowing they have no chance for recovery. It is a personal decision.”

As the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, Compassion & Choices advocates access to aid in dying for qualified individuals. Mentally competent, terminally ill patients should be allowed to receive a prescription from their doctor for medication to self-administer if they choose, to achieve a peaceful death. Opponents inaccurately label this “assisted suicide.” Williams debunks that description.

“It is not assisting suicide. I have thought this out, including for myself, and I’ve had many discussions with members of my family. … I’m also aware that my disease is going to progress. And there may be a day when I am told I have a finite amount of time left on this planet and when I may be in incredible pain. So when that time comes, I don’t care what anybody thinks or calls it. It’s my decision. And if I choose to go, then that’s my call.”

Like Compassion & Choices, Williams encourages families to discuss end-of-life matters before a crisis occurs. He advises that doctors participate in those discussions – but “their opinion or advice shouldn’t be given any more weight than that of others who need to be included in the discussion, including the patient’s sage counsel, psychiatrists, psychologists, their clergy or family members.”

“We are grateful to Montel for using his eloquent voice to inform people about the importance of end-of-life planning and of their right to control life’s final chapter,” said Compassion & Choices President Barbara Coombs Lee, a nurse and physician assistant for 25 years before becoming a private attorney and a Chief Petitioner of the first-in-the nation Oregon Death with Dignity Act in 1994. “Modern medicine has produced many life-saving achievements. Medicine can always do more. The question is whether they should, when a patient’s hope centers on dignity and comfort.”

Support for end-of-life choice is consistently strong in so-called red states and blue states and across demographic groups and religions. This strong support has held steady for two decades. A January 2011 Harris poll found that more than two-thirds (70%) of U.S. adults agree that “individuals who are terminally ill, in great pain and who have no chance for recovery, have the right to choose to end their own life.” A poll of likely New Jersey voters released last week found nearly two-thirds (63%) support allowing mentally competent, terminally ill adults with six months or less to live to receive a prescription for medication to end their suffering.

The full interview of Montel is available here:

http://viewer.zmags.com/publication/3d9a13e7#/3d9a13e7/24

The online edition of Compassion & Choices Magazine is available here:

http://viewer.zmags.com/publication/3d9a13e7#/3d9a13e7/1

Materials for advance healthcare planning are available here:

http://www.compassionandchoices.org/what-we-do/advance-planning/

Choice at life’s end scored a major victory yesterday! The Montana Senate defeated a bill to criminalize aid in dying, which was made legal by the 2009 state Supreme Court ruling in Baxter v. Montana.

As a Compassion & Choices supporter, you share credit for this impressive win. We prevailed against anti-choice zealots who worked for more than three years to undo the landmark Baxter ruling and quash the right of terminally ill Montanans to die with dignity on their own terms.

Make no mistake: This is a resounding victory for Compassion & Choices, our supporters in Montana and across the country, and for the principle of self-determination. Please take a few moments to savor it and the extraordinary effort that made it possible.

1) The Montana Senate actually reversed course to defeat HB505. We called it the “Physician Imprisonment Act of 2013″ because it would have incarcerated doctors for up to 10 years for providing aid in dying to terminal patients. Once predicted to pass, the bill was defeated instead, by a bipartisan vote of 27-23.

2) The Senate vote was the direct result of sustained on-the-ground activism by Compassion & Choices Montana. For more than two years, this dynamic campaign fielded staff and volunteers to alert residents to the threat of HB505. Its multi-tactical campaign included:

• an education drive that reached tens of thousands of Montanans in all corners of the state and encouraged them to telephone their legislators and otherwise make their voice heard;
• radio and print ads urging Montanans to contact their legislators to oppose the bill;
• outreach to newspaper editorial boards and other opinion leaders, and an aggressive letter-to-the-editor campaign;
• mobilization of doctors to publicly oppose the bill and affirm their support for the practice of aid in dying;
• in-person lobbying of lawmakers in Helena and their home districts;
• social media and other efforts to spread the word and summon voters to action.

3) A high point in our campaign came when long-time supporter Dr. Eric Kress, a family physician at Western Montana Clinic, publicly disclosed that he had written aid-in-dying prescriptions for three of his patients since the 2009 Baxter decision.

Dr. Kress narrated our radio ad, appeared in print ads, authored a powerful op-ed for The Missoulian newspaper and delivered courageous testimony before the Senate Judiciary Committee. We cannot overstate the importance of his eloquent and persuasive support, and the influence it had on lawmakers and the public alike.

4) We backed up our advocacy with a poll of Montana voters, which confirmed that 73 percent opposed HB505 and 67 percent were less likely to vote for a legislator who supported it.

5) The victory maintains Montana’s status as the third state where aid in dying is expressly legal. That status was the direct result of Compassion & Choices’ landmark Baxter v. Montana lawsuit, which confirmed that physician aid in dying did not violate state public policy in Montana.

6) The victory also underscores the growing level of public willingness to take personal action to defend the right to death with dignity, and to oppose zealots who seek to pass draconian laws like HB505 and use misinformation, scare tactics, moral judgments and other means to deny people their most sacred rights at life’s end.

Special thanks goes to the thousands of Montanans who took action to defeat HB505, and to hundreds of Compassion & Choices Montana volunteers who worked the phones, knocked on doors, talked to neighbors and loved ones, and otherwise devoted themselves to make sure that truth and reason prevailed.

Without our shared commitment, HB505 would be law today. The fact that it isn’t is a true testament to the leadership of Compassion & Choices Montana and the dedication of our wonderful supporters.

Last Wednesday, March 20, the Connecticut Assembly’s Public Health Committee began its consideration of a bill modeled after Oregon’s Death with Dignity Act. What a day! In my 22 years of legislative work, this hearing was the most grueling — and the most inspiring — I have ever witnessed.  Compassion & Choices volunteers and supporters showed themselves to be as passionate, judicious, intelligent and dedicated as citizens can ever be. They are committed to a world of justice and mercy. And they trust in democracy to make it so.

They came because they want choice and control in their own mortal endings. But mostly, they came for others who could not — their neighbors and loved ones and people unknown to them. They came that others need not suffer against their will, and that all may have the opportunity to face death in comfort and peace of mind. My heart swelled as I sat with them and heard the witness of these decent, altruistic, dedicated people.

The day began early, as aid-in-dying supporters travelled hours to Hartford by bus, car and train to be in line by 7:00 am.  Sign-up began at 9, but being in line by 7 helped ensure an opportunity to speak. The hearing began at 10 and our bill, Compassionate Aid in Dying for Terminally Ill Patients (HB 6645), came up about noon. Representative Betsy Ritter, the bill’s chief sponsor, spoke with eloquence and authority. Other legislators followed, and then the committee shifted gears and heard unrelated bills.

For many hours our supporters kept each other’s spirits up as they sat patiently through testimony about nursing technicians, dental hygienists, something called advance practice collaboration agreements, and tattoo artist licensure.

Some of our valiant and dedicated supporters just had to leave when their bus departed or their backs gave out. But others stayed until 1 am for their chance to speak. Yes, you read that right — they endured this process from 7 am until 1 am without complaint!!

Here are a just few of the heroes:

Shannon Sanford, a Yale-educated nurse who did her masters thesis on Oregon’s Death with Dignity Act.  ”Compassion & Choices were great to me when I was working on my thesis.  I can stay to the bitter end,” she told us. She had to, attending the entire 15-hour hearing as the last person to testify at approximately 1:30 am.

It fell to Shannon to present the committee with letters from all over the state. The stack was nearly a foot high, making a thump on the table.

Placing her hand on this tower of paper, Shannon said:  ”I brought my friends who are all in support of House Bill 6645″.  A legislator asked, ”I have to know, how many people signed letters?”  Shannon had a snappy response despite sitting 15 hours in a hearing room:  ”I stopped counting after 1500.”

Hunt Williams traveled over an hour to the state Capitol and waited twelve more to tell his story.

Hunt told the committee the story of his manslaughter arrest for merely cleaning a weapon his terminally ill friend, John Welles, used when he was dying of cancer. Only due to the overwhelming support and advocacy in his community of Cornwall, Connecticut, was Hunt sentenced to accelerated rehabilitation, a process that took over a year. The committee and the entire room sat in complete silence as they listened to Hunt’s riveting experience.

“Thank you sir, thank you for giving testimony.  I think I was taken aback by what you had to say,” a stunned co-chair of the committee, Senator Terry Gerratana, said.

Gloria Blick, aged 91, is a passionate advocate for end-of-life choice, as is her son Dr. Gary Blick.

When called to testify, Gloria and Dr. Blick held hands and both walked confidently to the microphone and sat together supporting each other.  Luckily, Gloria has not had a significant illness, but with her active volunteerism in the senior community, she has witnessed first-hand the pain and suffering of those at end of life, and it disturbs her greatly.

She made it clear to the committee she had been too active and too well to see her life end in a slow, relentless spiral of deterioration. Nor would she want her family, including Dr. Blick, to suffer unnecessarily with her.  ”I would never want to do that to my son,” she said.

Lillian Kaplan sat for hours waiting for her opportunity to speak out in favor of HB 6645, offering moving testimony regarding the difficult and painful death of her son-in-law Steven Kahn, who wanted to die on his own terms.  Lillian read into testimony a letter Steven wrote prior to his death.

“I am writing to you so you will not have to wonder…I’m not asking for your approval, only that you honor my judgment,” he wrote.

At the conclusion of her testimony, the Senate Chair of the Committee respectfully asked her age:  ”Well, in a year and a half I will be 100.”

Lillian, Gloria, Gary and Shannon and so many others showed themselves to be amazing and inspiring advocates. It is an honor to be able to work beside them for choice and control at life’s end.

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.’ “