OHSU’s POLST program to improve care for those with advanced illness highlighted in JAMA

Oregon’s groundbreaking Physician Orders for Life Sustaining Treatment program (POLST) is featured in the latest edition of the Journal of The American Medical Association. The program, which was created by health care professionals two decades ago in an effort to ensure the wishes of those with advanced illness are followed, has now spread to 34 states around the country.

READ – POLST Registry Do-Not-Resuscitate Orders and Other Patient Treatment Preferences (excerpt)

The program’s key component is an order form that provides clear instruction about the patient’s health care preferences to health professionals, such as paramedics and emergency room physicians, when a patient cannot communicate these wishes themselves. The form allows patients to request that they receive or refrain from certain measures such as CPR or intensive care. In addition, Oregon’s program includes a registry that offers 24-hour access to emergency workers when the printed form cannot be located.

The JAMA article highlights the latest research to gauge the impacts of the program. That data revealed:

  • 25,142 people were enrolled in Oregon’s registry during the first year of operation.
  • 86 percent of patients in the POLST program are 65 or older.
  • 28 percent wished to receive CPR if needed.
  • 72 percent had a “Do Not Resuscitate” order.
  • 50 percent of patients who had a DNR order wanted to be hospitalized.

“Our study shows that resuscitation is not the most important question for people with advanced illness and frailty,” said Susan Tolle, M.D., director of the Center for Ethics in Health Care at Oregon Health & Science University and senior author on the study. OHSU administers both the program and the registry. “Not only is CPR unlikely to be successful in patients with advanced illness, but knowing that the patient has a DNR order does not predict what other treatments they want or do not want. Half of patients with a DNR order wanted to return to the hospital and half did not. POLST orders for scope of treatment clarify which patients want to be hospitalized and whether they would want intensive care in a time of crisis.”

“The POLST program creates a system that has been shown to have advantages over traditional advance directives and do-not-resuscitate orders by providing a more comprehensive set of medical orders based on patient preferences and ensuring that patients receive the medical treatment they want with a high degree of accuracy,” added Alvin H. Moss, M.D., director of the West Virginia Center for End-of-Life Care, which oversees the Physician Orders for Scope of Treatment (POLST) program, a program comparable to Oregon’s POLST program, and the WV e-Directive Registry. “The Oregon POLST registry is the final step in completing the system and makes those orders available to treating health care providers in an emergency.”

One of the important aspects of the POLST program is its ability to launch important discussions among patients, their loved ones and health care professionals. When these discussions occur in the early stages of advanced illness for frailty, patients can share their wishes in case they are unable to communicate in a time of crisis. In addition, the program offers families some peace of mind because when a patient fills out a POLST form, the burden of family members who previously could only speculate on their loved one’s wishes, need not do so anymore.

“One of my colleagues, a rural doctor, taught me not to start my conversations about goals of care with code status,” explained study author Erik Fromme M.D., a palliative care specialist at OHSU. “Instead, he said, it should be the last question you talk about. Too often in health care the conversation begins and ends with resuscitation, when it would be much more helpful to know what kind of care a patient wants before they arrest. Our data, and programs like Oregon’s support the wisdom of this approach.”

READ – Study: Oregonians Who Have Registered Their Wishes Don’t Want Resuscitation, OPB.org
READ – An Oregon study points to better end-of-life care planning, Oregonian.com

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Come see ‘How to Die in Oregon’

Please join Compassion & Choices of Oregon and its Board for a special screening of the Sundance Grand Jury Prize winning documentary ‘How To Die in Oregon‘ at the Northwest Film Center.

We hope to see you there to celebrate and learn about the great work done by the volunteers of Compassion & Choices of Oregon.

When: Monday November 14th 8:30 PM
Where: Northwest Film Center – 1219 SW Park Avenue in Portland.
How: tickets are $9 and can be purchased now ONLINE .
FYI: There will be some tickets at the door – but every screening of this film in Oregon SOLD OUT.

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Annual luncheon a success!

CCO’s Annual Luncheon on October 25th was our biggest annual event to date, with over 320 attendees! The preliminary fundraising report is that the event brought in over $54,000 at the lunch and another $10,000 in pledges, significantly more than last year.

CCO honored Volunteer of the Year Esther Bell with a standing ovation. Esther has been a Client Support volunteer with CCO since 2004 and has helped over 100 clients in that time. Look for some words from her in our printed newsletter this November!

Compassion Volunteer of the Year Esther Bell

Compassion Volunteer of the Year Esther Bell

Lynn Frank spoke eloquently about his mother’s experience using the Death with Dignity Law as a client of Compassion & Choices of Oregon. His story mixed humor and emotion as our client’s stories often do, and highlighted how important CCO’s work can be in supporting people to make their own choices at the end of life.

State Attorney General John Kroger spoke about the law on both a personal and professional level. He shared stories of how his grandmother’s death in a hospital didn’t reflect her vibrant life. He said, “We need to give people the opportunity to end their lives with spirit and control and dignity, my grandmother didn’t have the opportunity to make that choice,” and stated his confidence that the Attorney General’s office will continue to support the law that makes that choices possible. You can read more of John Kroger’s speech at the Lund Report.

Thank you to everyone who attended–it was wonderful to see so many of our long-time supporters there! And an extra big thank you to our Table Captains, who went above and beyond to bring new faces.

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John Kroger to speak at Compassion Annual Lunch

Oregon Attorney General John Kroger will be the keynote speaker at the 16th Annual Compassion & Choices of Oregon Lunch. We expect over 400 attendees this year, making it the largest event in the United States Death with Dignity movement.

John Kroger, Oregon Attorney General

John Kroger, Oregon Attorney General

John has devoted his entire life to public service as a United States Marine, federal prosecutor, public policy expert, and teacher. John was elected in November 2008 after winning the nominations of both the Democratic and Republican parties. He won in every county in the state. John’s top priority as Attorney General is fighting crime and protecting crime victims. As Attorney General he created Oregon’s first Environmental Crimes Enforcement Unit and our state’s Mortgage Fraud Task Force.


As a federal criminal prosecutor, John won major cases against mafia killers, drug kingpins and corrupt government officials. He helped prosecute crooked Enron executives and served on the emergency response team to the 9/11 terrorist attack on the World Trade Center. In recognition of his work, John won awards and commendations from the FBI, the Drug Enforcement Administration,and the State Department. In 1999, John received the Director’s Award for Outstanding Performance as an Assistant United States Attorney from Attorney General Janet Reno for convicting two mafia captains who committed multiple murders. John wrote about his experiences as a prosecutor in his book Convictions, which won the Oregon Book Award in 2009.

CIRCLE THIS DATE. Our Annual Fundraising Lunch is October 25th at the Multnomah Athletic Club from 11:45 to 1:00.

Barbara Coombs Lee, President of the national organization Compassion & Choices will also speak. Our volunteer of the year will be announced.

The Annual Fundraising Lunch is foremost opportunity to invite friends and important members of the community to hear about the important work of Compassion & Choices of Oregon and ask for their financial support.

Want to help? Be a Table Captain!

Table Captains invite ten friends and colleagues to join them for the Annual Fundraising Lunch, to showcase Compassion & Choices of Oregon. Some supporters work together to be co-Captains and share a table. This event is a great way to have fun with friends while providing information at the same time.

Contact Kristin Barber at Kristin@compassionoforegon.org or at 503-525-1956 to be a CCO Table Captain.

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U.S. Catholic bishops misunderstand our death-with-dignity laws

By Harris Meyer, July 8, 2011 – Published at Crosscut.com

Meeting in Bellevue, the bishops take a firmer line on physician-assisted aid-in-dying laws and make allegations about abuses that are not supported by the experience in Oregon and Washington.

The U.S. Conference of Catholic Bishops’ policy on physician-assisted suicide, approved at their national meeting in Bellevue last month , is the latest move by Roman Catholic leaders to intervene in Americans’ personal health care decisions.

The eight-page policy, which the bishops passed 191-1 at their annual spring meeting, is full of inaccurate and misleading statements about the Death with Dignity laws in Washington and Oregon and the policy positions of the laws’ supporters. It ignores 14 years of experience in Oregon and two years in Washington. The head of Compassion & Choices, the main group supporting those laws, criticized the bishops’ policy statement as “full of reckless, unsubstantiated accusations.”

The bishops’ statement warns that the voter-approved Death with Dignity laws — which allow terminally ill, mentally competent adult patients to receive medications from their doctor to end their lives — essentially legalize murder. And it makes the stunning claim that U.S. leaders of the Death with Dignity movement in effect advocate ending the lives of people who have not sought help in dying.

“A society that devalues some people’s lives, by hastening and facilitating their deaths, will ultimately lose respect for their other rights and freedoms,” the bishops said. “Taking life in the name of compassion also invites a slippery slope toward ending the lives of people with non-terminal conditions.”

The new policy, “To Live Each Day with Dignity,” is the U.S. church’s first official policy on aid-in-dying, which also is legal in Montana under a 2009 Montana Supreme Court ruling. The policy follows increasingly aggressive efforts by the bishops to require Catholic health care facilities and providers to insert and maintain feeding and hydration tubes in terminally ill patients — even those who have written advance directives stating they don’t want them.

The bishops also have cracked down on Catholic hospitals that performed tube-tying operations for women who are not going to have more babies. Last year, a bishop expelled St. Charles Medical Center in Bend, Ore., a century-old hospital founded by nuns, from his diocese for refusing to stop performing tubal ligations.

These policies matter because the bishops oversee more than 600 Catholic hospitals and hundreds of Catholic nursing homes, assisted living centers, and hospices. Please click here to continue reading this important story.

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Advocates for Dying Patients Stand Against Bishops: Legal option to choose aid in dying enhances human dignity

SEATTLE, June 15, 2011 – Compassion & Choices, the nation’s largest nonprofit organization advocating for end-of-life care and choice, joined by a Washington physician with ALS, a Catholic widower of a dying patient who used Washington’s Death With Dignity Act, clergy and doctors today responded to a new attack on patients’ rights by the United States Conference of Catholic Bishops (USCCB).

The USCCB is meeting in Seattle to strengthen their opposition to end-of-life choice. The Roman Catholic bishops stated they are reacting to advances in patients’ rights made in Washington and Montana by groups supporting “compassion” and “choices.” The Roman Catholic bishops hope to retard growing access to aid in dying as part of the standard of care for end-of-life medical treatment.

Tom Preston, Compassion & Choices of Washington Medical Director

Tom Preston, Compassion & Choices of Washington Medical Director

The USCCB release distorts the values of Compassion & Choices’ and misrepresents our work, claiming it “undermines patients’ freedom by putting pressure on them.” The Roman Catholic bishops’ opposition contradicts the support of most Catholics and Americans for patients’ rights at the end of life. Majorities of people of every faith and belief – including Roman Catholics – believe in permitting terminally ill patients to make their own choices about the final days of a terminal disease.

 

Compassion & Choices President Barbara Coombs Lee said, “We welcome the Catholic bishops’ clear statement that opposition to aid in dying is a matter of religious belief. While we respect religious instruction to those of the Catholic faith, we find it unacceptable to impose the teachings of one religion on everyone in a pluralistic society. We believe end-of-life care should follow the patient’s values and beliefs, and good medical practice, but not be restricted against the patient’s will by Catholic Church doctrine.”

Dr. Richard Wesley, a retired Seattle pulmonologist and Intensive Care Specialist who is terminally ill with ALS, told a news conference, “I want to live as long as I possibly can, providing I still have quality of life. At the same time, when life is no longer enjoyable, I want to go quickly and peacefully. As a physician, I have witnessed many slow painful deaths. I do not want to endure a slow painful death. I don’t know if I will take the life-ending medication, but I do know that it gives me peace of mind to have some choice and control at the end of my life. Providing aid and comfort in dying is part of good medical care for terminal patients at the end of their lives. It is a physician’s duties to alleviate pain, address our patients’ anxieties and worries, and to try to help them have the peaceful death all patients want. Whether to ask my physician for aid and comfort in dying, or to use that medication to avoid a painful death, is my decision. It’s my life. It is my death and it should be my choice.”

“Rather than undermining the value of patients’ lives I believe that a legal option to choose aid in dying enhances their dignity as moral agents,” said Rev. Pat Simpson, Seattle district superintendent of the Pacific Northwest Conference of the United Methodist Church. “Our law in Washington provides freedom for human beings of every faith – or of no faith – to make choices about dying according to their own values and beliefs. As a Christian and as a religious leader I am profoundly grateful to serve in such a context.”

Anthony Rizzo, of Puyallup, Washington, whose wife, Joyce, used the Washington Death With Dignity Act to aid in her dying from lung cancer, said, “I am part of the majority of Roman Catholics who voted for the Death With Dignity Act and who supports patient choice at the end of life. Joyce was suffering terribly, in excruciating pain. She had tried every treatment and therapy, and had part of her lung removed. The fight to overcome her fatal disease had been a three-year ordeal for Joyce, but she hung in there until there was no hope. Knowing she was facing a painful and difficult death, it was a wonderful thing and a great comfort for Joyce to have the choice of aid in her dying. Joyce did finally attain the peaceful, dignified death she desired because she could use the Death With Dignity Act. I shudder to think of the pain she would have experienced without such end-of-life choices, as the Catholic bishops would deny her.”

“Our experience has been that terminally-ill patients and their families are benefiting from aid in dying,” said Dr. Tom Preston, Medical Director of Compassion & Choices of Washington. “With those terminal patients who have qualified to use the Death With Dignity Act, I have observed peaceful dying. There has been overwhelming gratitude from patients and their families. Because the family is with the patient at the end of his or her life, all can say their goodbyes. As studies of the Oregon experience have found, families are more at peace with the loved-ones’ deaths than families of other patients.”

Multiple studies have documented broad improvements in end-of-life care where aid in dying is legal. When aid in dying is available it raises the floor for all end-of-life care, benefiting all terminally ill patients. Physicians prescribe more strong pain medications, receive more Continuing Education in pain and symptom management, and refer more often and earlier to hospice. Communication between patients and physicians is more open and end-of-life options are discussed more fully and frequently. For the relatively small number of dying patients who find themselves trapped in a dying process they find unbearable, aid in dying offers a compassionate choice for a peaceful death.

SIGN THE LETTER – I Stand For Patient Wishes Over Religious Dogma
READ – Debate on doctor-assisted suicide heating up again, Denver Post
READ – Catholic Church Amps Up Its Fight Against Aid in Dying, The Nation
READ – Bishops approve first major statement on physician-assisted suicide, Catholic News Service
READ – National meeting of Catholic bishops opens in Bellevue, draws critics, Seattle Times
READ – ‘To Live Each Day with Dignity: A Statement on Physician Assisted Suicide’, United States Conference of Catholic Bishops

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The End of an Era

Jack Kervorkian died in a Michigan Hospital on June 3, 2011. The following is response from around Oregon.

Eugene Register Guard – editorial, ‘Dr. Death’s’ dark legacy – Kevorkian served his cause poorly. With his knack for self-promotion and his flair for feeding the public’s appetite for the macabre, Jack Kevorkian made his gaunt features the face of physician-assisted suicide for a quarter century. He served his cause poorly, as is shown by the fact that only three states, including Oregon, allow physician-assisted suicide in any form. Kevorkian died of natural causes last Friday at age 83, and now the nation can begin a conversation about the end of life without the funhouse-mirror distortions introduced by “Dr. Death’s” presence. READ MORE.

The Oregonian – editorial, Jack Kevorkian, Oregon’s dark shadow. Leaders of the 1997 Oregon initiative to legalize physician-assisted suicide never let Dr. Jack Kevorkian near this state. As the creepy face of assisted suicide, Kevorkian was as toxic as the poison that dripped from his homemade death machine. But like it or not, Oregon history is entwined with the audacious doctor who died the old-fashioned way Friday at a Detroit-area hospital, succumbing to pulmonary thrombosis, a blood clot. READ MORE.

Guest Column by Jason Renaud of Compassion & Choices of Oregon, Janet Adkins, Jack Kevorkian and the end of an era. Kevorkian’s death marks the end of an era. Led by the example of Oregonians, physician aid in dying is becoming accepted as a component of standard care for persons with terminal illness. Three Western states — Oregon, Washington and Montana — have affirmed that the public policy of their states permits this choice. READ MORE.

Daily Astorian – editorial, Kevorkian’s deaths not always driven by disease. The case for assisted suicide seems to depend on human sympathy – on the impulse toward mercy, the desire to ease what seems like pointless pain and suffering. Why shouldn’t the terminally ill meet death on their own terms, rather than at the end of prolonged agonies? Why shouldn’t the dying depart this earth with dignity, instead of enduring the inexorable stripping away of their physical and mental faculties? READ MORE.

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Memorial Day Concert with Michael Allen Harrison

Michael Allen Harrison

Michael Allen Harrison

Plan to attend the Compassion & Choices of Oregon Memorial Day Concert with Michael Allen Harrison at the Old Church in downtown Portland, May 30 at 5 PM, 1422 S.W. 11th Avenue.


Michael Allen Harrison delivers music to the heart. His classical contemporary style carves a distinct niche of timeless music that has connected with so many during his two and a half decade career.

Tickets are $26 and available at the door.

All tickets include an Oregon wine reception by the Montinore Estate.

Need directions to The Old Church? See a map!

Thanks to our Memorial Day Concert sponsors – Rhino Printing, Watershed Communications, and the Montinore Estate.

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End-of-life experiences compared in survey

From The Oregonian, April 20, 2011

End-of-life quality among people who received lethal prescriptions under Oregon’s Death With Dignity Act is comparable and perhaps better in some ways than people dying conventionally, a survey of family members suggests.

Researchers asked family members to rate the dying experience of their loved one using a 33-item questionnaire. They compared the experience of 52 Oregonians who received a lethal prescription, 34 who requested but did not receive one, and 63 who never sought one.

Ratings were no different on most questions. But those who obtained a lethal prescription were more likely to discuss end-of-life wishes — and more likely to say goodbye. They appeared to experience less trouble with feeding themselves, incontinence and exhaustion. They laughed and smiled more, family members said.

Study author Linda Ganzini, a professor of psychiatry at Oregon Health & Science University, says the assisted death option appears to be fulfilling a preference to maintain control and avoid a period of declining function before death. Ganzini has spent years tracking the impact of the 1997 legalization of lethal prescriptions for the terminally ill in Oregon. Opponents and supporters of the law have at various times seized on Ganzini ‘s findings to bolster their causes.

Ganzini talked with The Oregonian about her latest study, appearing in the Journal of Palliative Medicine. (This article is not available online.)

Q: Why hasn’t anyone before now compared end-of-life quality among people using lethal prescriptions and those not seeking that option? Is it difficult to find people willing to participate?

A: There has been concern that people who say they want to understand and study things actually have an agenda. That has made some people wary of participating in studies, and some organizations wary of asking families to participate in research. My studies have annoyed both sides of the debate.

Q: How does your latest study square with previous work?

A: Originally in the debate about physician aid-in-dying, there was the contention that people who wanted this option did so because of intolerable pain and suffering. We’ve found that it’s the worry about suffering that is important. People seeking this option have a firm conviction that they want to cut short their life before they experience suffering, not because they are suffering. In a previous study, people reported a very low symptom burden at the time they made the request. But they had a lot of worry about future pain and fatigue. Our latest study supports that people who request these prescriptions use them to avoid suffering in the future.

Q: You found most of your Death with Dignity patients through an advocacy group, Compassion & Choices of Oregon, which helps patients seeking lethal prescriptions. Could that skew your findings?

A: Most of the referrals came from Compassion & Choices of Oregon. Only a little over one-third of those invited to participate in the study agreed to participate. That leaves open the possibility that family members who felt more strongly about this being a good option were more likely to participate. It is a clear limitation. In the comparison group, family members knew this was a study about assisted suicide. Those with negative feelings were less likely to agree to participate. Another concern we had about the control group was that people who experienced the death of a loved one that didn’t go well may be less likely to talk about it.

Q: What are the practical implications of what you’ve found?

A: These studies shed light on a larger group of people who have different ideas about what they want at the end of life. At the beginning of the hospice movement, there were somewhat rigid ideas about what people needed. The mantra included the ideal that no one should die alone. In fact, there is a small group of people who want to die alone. It included the need for family reconciliation. There is a group of people who do not want family reconciliation. It included the ideal that no one should die in pain. There is a group who would rather have pain than have confused thinking from opiates. End-of-life care has to expand to incorporate the huge diversity in people’s values. We need to be listening for that, rather than imposing our own ideas.

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Supporters of death with dignity hail failure of HB 2016

Compassion & Choices of Oregon today praised members of the House Health Care Committee who stopped Oregon House Bill 2016 from advancing.

The measure aimed to overturn a crucial provision of the voter-passed Death with Dignity Act. Currently the law allows patients with a terminal illness the right to request aid in dying from their physician without an automatic presumption of mental illness and mental incapacity. The sponsors wanted Oregon law to presume all terminally ill patients who request aid in dying are mentally unfit.

READ – Read Oregon House Bill 2016

“House Bill 2016 was designed to burden patients and physicians with needless procedures and bureaucratic paperwork. The committee leadership was right to reject it,” said Jason Renaud, Executive Director of Compassion & Choices of Oregon. “The sponsors sought to erect barriers to access the Death with Dignity Act. The inability of the sponsors to get even a courtesy hearing for their bill testifies to the overwhelming support for Oregon’s Death with Dignity Act.”

House Bill 2016 was assigned to the House Health Care Committee. To advance a bill, the responsible committee must conduct a work session. The Health Care Committee took no action before the April 8th deadline to schedule a hearing. The Death with Dignity Act passed in 1997 with over 60% of the vote.

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