08.20.08 Right to Know Act passes California Senate
The California Right to Know End-of-Life Options Act (AB 2747) passed today in the California Senate, marking a national precedent for end-of-life care.
The California Assembly approved the bill in May.
The Right to Know Act requires that when terminally ill patients ask about options at the end of life their physician must either offer a comprehensive, accurate discussion of all legal end-of-life care options or refer the patient to someone who will.
“This bill serves as a national model for patients to receive the necessary information and power to influence the manner of death,” said Barbara CoombsLee, president of Compassion and Choices, the sponsor of the measure. “It shiftsphysician/patient communication from a paternalistic model to a cooperative one.A ‘doctor knows best’ approach, or pat on the knee is no longer appropriate formany patients. A duty to share information enables patients to work with theirdoctors to determine the option that matches their values and desires.”
The bill receives support from a slew of organizations, including the American Civil Liberties Union, the California Medical Association and the National Association of Social Workers.
It will now go to the governor’s office for signature.
Catholic Church Funnels Abuse Money into I-1000 Opposition
The Catholic Church is funneling funds away from out-of-state sexual abuse reparations in order to oppose the I-1000 campaign in Washington, the Public Disclosure Commission reported recently.
This comes just after I-1000 opponents first tried to hide donors by ignoring state campaign finance disclosure laws until a federal judge struck them down. Then they spent months claiming underdog status and attacking death with dignity supporters for accepting donations from out-of-state. The commission’s new findings reveal those claims are not only false but hypocritical.
In a period of eight days (July 28 to August 1), opponents received $132,650 from Roman Catholic Dioceses and Archdioceses. More than $70,000 is from out of state and $50,000 of it comes from the Catholic Health Association in Washington, D.C.
Five of the contributing out-of-state Dioceses and Archdioceses are involved in a total of 28 criminal investigations, 86 civil lawsuits and 56 additional child abuse allegations.
Some of these cases are unresolved or still pending, and in many cases the victims have never received restitution.
“Families in Denver, Portland and elsewhere would want these dioceses to focus their extra money on repairing the damage done to victims of abuse in their own communities, rather than sending that money to an out-of-state political campaign,” said Alex Morgan, campaign manager for Yes on 1000. “This just shows how far the opposition will go to mislead the voters of Washington.”
Read the blog posting:
http://www.huffingtonpost.com/david-goldstein/alms-for-the-media-consul_b_119016.html
07.25.08: Initiative I-1000 qualifies for Washington ballot
Washington Secretary of State Sam Reed announced yesterday that Initiative 1000 has enough valid signatures to qualify for the November ballot.
Thousands of volunteers collected nearly 320,000 signatures and submitted them to the Secretary of State by the July 3 turn-in deadline. According to elections officials, a random check of petition signatures submitted in support of the proposal showed that the measure meets the constitutional requirement for a minimum of 224,880 valid signatures of registered voters.
It is the second initiative to be certified for the Nov. 4 General Election ballot.
Initiative I-1000 mirrors Oregon’s Death with Dignity Act. It would allow terminally ill patients the choice to end their lives on their own terms.
The complete ballot text is available online at http://www.secstate.wa.gov/elections/initiatives/people.aspx?y=2008.
“Nobody, not the government and not the church, should tell you how much you have to suffer if you are terminally ill,” said volunteer Nancy Niedzielski. “If you want to choose a death with dignity, that decision should be your decision.”
The measure is endorsed by major newspapers around the Northwest, including the Seattle Times, the Everett Herald, the Vancouver Columbian, the Portland Oregonian, the Issaquah Press, and the Lewiston Tribune.
The YES! on 1000 campaign released a YouTube video of the rally at the State Capitol when the signatures were turned in to the Secretary of State. In the video, former governor Booth Gardner and Niedzielski speak to cheering supporters about the importance of bringing the choice of death with dignity to Washington.
Watch the video at: http://www.youtube.com/watch?v=rycDlqAOGAM
06.30.08: Compassion & Choices Legal Director publishes issue brief for American Constitution Society
Kathryn Tucker, legal director for Compassion & Choices, this month published an issue briefing for the American Constitution Society.
In the 15-page brief, Tucker describes Oregon's Death with Dignity Act, the only law in the nation that legalizes assistance in dying for terminally ill patients, and she evaluates Oregon's experience under the law for the decade it has been in effect.
Tucker explains that the Oregon law empowers terminally ill, mentally competent adult Oregonians to control the timing and manner of death, subject to careful procedures, by obtaining from the attending physician a prescription for medication that will hasten death.
It is particularly timely to draw lessons from Oregon's experience, she contends, because a wealth of information is now available about the law's implementation and because a measure virtually identical to Oregon's law is slated to appear on the ballot this November in Washington State.
Tucker's conclusion, based on her review and analysis of the Oregon data, is that Oregon's law has harmed no one and has benefited both the relatively few patients in extremis who make use of it and a great many more who draw comfort from knowing this option is available.
She urges citizens of other states across the country to heed the lessons of Oregon and show the same compassion Oregon has shown to terminally ill, competent patients who wish to end their suffering.
06.26.08: Right to Know Act passes two senate committees
The California Senate Health and Judiciary committees voted last evening and this morning to pass the Terminal Patients’ Right to Know End-of-Life Options Act (AB 2747). The committee votes come a month after the California Assembly voted 41-32 in favor of the bill.
The Right to Know Act is now closer than ever to setting a national precedent for patients’ rights.
It would be the first in the country to provide terminally ill patients with a full disclosure of and counseling about all available legal and ethical end-of-life care options.
When requested, information about hospice care, refusal or withdrawing or life-prolonging treatments, voluntary stopping eating and drinking, palliative care and palliative sedation would be discussed with the patient. It also requires that health care providers who do not wish to comply with a patient’s choice to refer or transfer them to another provider.
The Right to Know Act has garnered support from 16 organizations, ranging from the American Civil Liberties Union to the California Nurses Association.
It will move to the full Senate floor in July or August.
6.17.08 Compassion & Choices President Barbara Coombs Lee Interviewed on Portland news channel
On June 16, Compassion & Choices President Barbara Coombs Lee discussed Washington’s Yes! on I-1000 measure with Portland news station KATU.
The campaign is nearing its target number of signatures needed by the July 3 deadline, reporters said.
Lee is quoted frequently during the interview. She discusses the law’s effectiveness in Oregon and the fact that Washington residents deserve the right to request and receive lethal medication to achieve a peaceful death.
“It’s time for Washingtonians to have the same kinds of comfort and the same kind of hope that Oregonians do,” she said. “After 10 years, it’s a logical time for another state to say, ‘Us, too.’”
The story ends with statistics about how many people use the law. Reporters cited the fact that those who received aid in dying in Oregon are typically “older than 55, white, insured and educated.”
These facts dispel the myth that aid in dying creates a “slippery slope” among the poor, vulnerable and uninsured.
06.09.08: Compassion & Choices highlighted in San Francisco Chronicle article
An article in this Sunday’s issue of the San Francisco Chronicle Sunday magazine poignantly and thoroughly describes the work of Compassion & Choices in California.
Writer Katherine Seligman tells the story of Julie, a Compassion & Choices client in California who achieved a peaceful end to her constant pain from lung cancer and rheumatoid arthritis. Readers can see how Julie navigated the legal issues involved in obtaining aid in dying in California, which does not have a Death with Dignity law.
Seligman touches on how Julie’s family comes to grips with the emotional aspects of choosing aid in dying. She also writes about the key people involved, such as volunteer coordinator Carol Van Aelstyn, and how they got involved with Compassion & Choices.
The story offers a very positive perspective on Compassion & Choices and how people around the nation can benefit from its important services.
Read the article
06.03.08: American Medical Student Association posts aid-in-dying policy online
The American Medical Student Association publicly announced its support for aid in dying today by posting a policy on the practice on its Web site.
According to the policy, the group of more than 68,000 physicians and physicians-in-training supports laws “that empower terminally ill patients who have decisional capacity to hasten what might otherwise be a protracted, undignified or extremely painful death.”
It explicitly differentiates aid in dying, or the practice of a terminally ill person taking lethal medication to achieve a peaceful death, from suicide.
The group first adopted an aid-in-dying policy in the 1990’s and renewed its support for the practice at a March 2008 convention.
Read the AMSA policy
05.29.08 U.S. political climate warms up to end-of-life choice
If a recent series of votes and quotes is any indication, politicians are hearing what people want – the right to direct their own health care.
First, the California Assembly voted 41-32 on May 28 in favor of the California Right to Know End-of-Life Options Act.
This is a major leap forward for patients’ rights, because the legislation ensures terminally ill Californians will hear all available legal and ethical end-of-life care options currently available to them.
Second, the National Libertarian Party recently adopted a policy supporting individuals’ rights to determine all aspects of their health care, including care at the end of life.
The Libertarian health care policy reads: “We recognize the freedom of individuals to determine the level of health insurance they want, the level of health care they want, the care providers they want, the medicines and treatments they will use and all other aspects of their medical care, including end-of-life decisions.”
And during the Democratic presidential primary campaign, both Barack Obama and Hillary Clinton expressed support for people’s right to choose aid in dying.
“The fact that Oregon is breaking new ground and providing valuable information as to what does and doesn’t work when it comes to end-of-life questions, I think, is very beneficial,” Clinton told the Eugene Register-Guard when asked her opinion on aid in dying.
05.27.08: Physicians acknowledge Oregon's law improves end-of-life care
An article in American Medical News reported that Oregon’s first decade of Death with Dignity has debunked opponents’ fears and greatly improved end-of-life care.
The story, published in the newspaper of the American Medical Association, points out that Oregon’s law has benefited both physicians and patients.
Comfort care has accelerated across the country, and physicians say they are more likely to discuss end-of-life issues with patients sooner.
Dr. John Lantos, a bioethicist in Kansas City, Mo., said he initially opposed the Death with Dignity Act. He feared it would create a slippery slope for vulnerable patients.
But now that Oregon has 10 years of solid data behind it, Lantos said he finds the data “reassuring” and calls the law “a successful experiment.”
Dr. Chuck Hofmann, an internist in Baker City, Ore., agreed.
The law has “ ‘done more good than harm because it forced the end-of-life discussion to come sooner, and we’re more prepared,” he said. “We can assure the patient that when there’s no hope of being restored to health, they are not going to suffer and will be kept comfortable.’”
Read the article
05.16.08: Assemblywoman Speaks Out on Patients’ Right to Know
California Assemblywoman Patty Berg wrote a powerful editorial for California’s state government newspaper this week addressing the importance of information.
Berg, who introduced the Right to Know End-of-Life Options Act, rejects the “intellectual censorship” posited by the bill’s opponents. She points out that refusing to talk about difficult topics things does not make them go away.
But when people are armed with information, they are empowered to make choices that can help them live their last days in comfort.
“Patients deserve to know what is available,” Berg says. “Then they can address the end of life as it comes, with options that make sense based on their experience and their needs.”
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08.19.08 Bush Administration moves to undercut end-of-life care and choices
Compassion & Choices today protested draft regulations circulating within the U.S. Department of Health & Human Services that would allow health care workers to deny treatment based on their religious or moral beliefs.
Compassion & Choices released a letter to HHS secretary Mike Leavitt calling for the agency to withdraw the proposed regulation.
“It is appalling that patients suffering from cancer or other terminal diseases would have their medical choices restricted based on a health care worker’s individual religious beliefs,” said Barbara Coombs Lee, president of Compassion & Choices.
Kathryn Tucker, legal affairs director for Compassion & Choices, said the proposed regulations are dangerous to people facing the end of life.
“The HHS’s apparent intent is to remove a Health Care Entity employee’s obligation to inform patients of all of their treatment options or to refer patients to other providers if those patients request treatment options with which the employee does not personally agree,” Tucker said. “The very notion of denying patients access to any such information violates fundamental health care principles of autonomy and informed consent.”
Compassion & Choices calls upon the Administration not to pursue this proposed regulation any further.
08.12.08: Oregon continues to lead nation’s end-of-life care
Oregon once again proves to be a leader in the end-of-life care arena, as highlighted in a recent article in The Oregonian. Six years before the state passed its landmark Death with Dignity initiaitve, in 1991 Oregon began offering a unique set of documents known as Physician Orders for Life-Sustaining Treatment, or POLST forms.
These forms allow the terminally ill to specify the type of treatment they want to receive from their health care provider. Combined with state laws recognizing the paper, the forms let care providers know about and legally follow patients' specific end-of-life wishes. This may include refusing life-sustaining interventions such as respirators, feeding tubes, CPR or antibiotics.
California and New York recently passed laws legally recognizing the POLST forms, and a handful of other states have their own versions. More states are considering adopting them, including Massachusetts, Florida and Texas.
In Oregon, POLST forms can be found at almost every hospice and nursing home around the state. Some experts believe this may explain why so many hospice patients die at home in Oregon instead of in a hospital.
Read the story
http://www.oregonlive.com/health/index.ssf/2008/08/
oregon_endoflife_idea_moves_to.html
07.15.08 Oregon Ranks High in Pain Care Study
Oregon joined only four other states in earning an “A” grade in a major national study of state pain policies, according to a report released today.
Researchers from the University of Wisconsin’s Pain & Policy Studies Group evaluated whether each state’s pain management regulations make it easy or difficult to access pain care. It also measures stateprogress to increase pain management and lower policy barriers.
Oregon’s high standing is additional evidence of the state’s excellent pain management, thanks in large part to the Death with Dignity Act. The aid-in-dying law has galvanized end-of-life care in areas ranging from pain care management to participation in hospice. Oregon’s high grade on the pain care report reinforces this fact.
Washington improved over last year but rated a lower grade of B+, indicating it could stand to learn from Oregon’s example by passing Initiative I-1000 this November.
The study was funded by the American Cancer Society, the Lance Armstrong Foundation (LAF) and Susan G. Komen for the Cure.
Read the report
http://www.painpolicy.wisc.edu/Achieving_Balance/index.html
06.23.08 National Association of Social Workers endorses Right to Know Act
The California chapter of the National Association of Social Workers has publicly announced its support of the Right to Know End-of-Life Options Act.
The chapter distributed an official letter explaining why the group, which consists of more than 12,000 professional social workers, endorses the legislation.
“The social workers back the bill because it allows terminally-ill patients an opportunity to obtain information about their end of life care choices,” the letter reads. “Our role in the medical social work field is to facilitate discussion with a patient where they may express their thoughts and emotions concerning their health and the options available to them. We support this important legislation, which would allow terminally ill patients to explore the end-of-life programs and services available to them.”
06.13.08 State Cancer Doctors
At Odds With Findings of National Study
A study released by the American Society of Clinical Oncologists is posing a public relations problem for a group of California cancer doctors opposed to a bill that essentially puts into law the practice endorsed by the national study.
Even as oncologists from around the country received a study this week that says terminally ill patients are better off with more information about the nature of dying, Northern California Oncologists were trying to kill a bill that requires doctors to have open discussions with their dying patients.
“They’re at odds with the findings of a study presented to their national organization,” said Barbara Lee, president of Compassion & Choices, the sponsors of the measure. “And yet they’re trying to convince lawmakers that their words should be the final words.”
The study, The Role of Chemotherapy at the End of Life: “When Is Enough, Enough?” was published in the Journal of the American Medical Association and presented to the American Society of Clinical Oncologists. The findings confirmed the belief of many advocates that keeping patients in the dark does more harm than good.
It’s unclear whether the new study would have significant impact on the fate of Assembly Bill 2747, which has already been approved by the California Assembly.
“It’s up to the state Senate to decide whether they want to believe a small group of doctors with a political ax to grind, or whether they want to believe the latest scientific data,” said Lee.
The study found a “conundrum for today’s oncologist” in that “moving on to third- or fourth-line chemotherapy may be easier than discussing hospice care.” The study also notes that “chemotherapy intervention is better compensated than are discussions.”
A second study reported in the Journal of Clinical Oncology (May 2008, abstract 6505) finds that terminal patients who have an End-of-Life discussion with their physician are more likely to receive hospice care, less likely to enter an Intensive Care Unit, and more likely to have a Do Not Resuscitate (DNR) order.
Especially striking is the finding that patients who discuss end-of-life options are not more nervous or worried than patients who do not.
Read related article
06.12.08: Compassion & Choices President Barbara Coombs Lee Launches Blog on ELDR.com
Compassion & Choices President Barbara Coombs Lee this week began the first of what will be a bimonthly blog (or Web log) on ELDR.com, a magazine for people over age 60.
ELDR, which puts out a print magazine and an online community, last month published a survey about people’s views on end-of-life wishes. The report revealed a surprising 81.5 percent of Americans believes individuals have the right to determine how they want to die. Lee used the survey as a springboard to introduce the work of Compassion & Choices to ELDR’s readers.
In her first entry, she explains what we do and why we’re doing it. She hopes people will use the information she presents to protect themselves and their families from another Terry Schiavo-like debacle.
“I hope readers will get information, get angry, and get prepared,” she tells readers.
Look for Lee’s blog, “We Mortals,” on ELDR.com every two weeks.
Read the first one here
06.11.08: New study reveals end-of-life information benefits patients
A study published in the May 2008 issue of the Journal of Clinical Oncology reveals terminally ill patients who discuss their end-of-life care options with their physician receive better care than those who don’t. The study also found such discussions did not cause patients to suffer emotional distress, such as anxiety or depression.
Researchers followed 603 advanced cancer patients and compared the mental health of those whose physicians talked with them about end-of-life care with those who didn’t. They found patients who had such discussions were less likely to be hospitalized, received hospice care more often, were less likely to undergo invasive procedures and were less anxious than patients who did not have end-of-life discussions with their physician.
The study coincides perfectly with The California Right to Know End-of-Life Options Act’s recent passage in the California Assembly. That bill now heads to the Senate for a vote.
The oncologists’ research dispels both Right to Know opponent arguments and physician fears that informing terminally ill patients about their end-of-life care creates more harm than good.
Read the abstract
06.04.08: Colorado Governor Signs Bill Protecting Patients’ Rights
Coloradoans need not worry that their health care will be compromised by hospital mergers, thanks to a bill signed into law recently by Gov. Bill Ritter.
The bill clarifies the Colorado attorney general’s authority to include conducting hearings and reviewing proposed mergers for negative impacts to patient care.
The legislation comes in light of a pending deal between the Sisters of Charity of Leavenworth Health System, a Catholic entity, and the nonsectarian Exempla Healthcare System.
Colorado Attorney General John Suthers declined to prohibit the transaction on the grounds that he had no legal basis. Opponents of the deal complained it would force patients to seek hospitals outside Jefferson County for certain reproductive and end-of-life treatment.
In a letter of support to Roland Halpern, Director of Community Relations for Compassion & Choices, Gov. Ritter emphasized his belief in upholding patient-directed health care.
“I agree that diminution of access to health care is a serious concern, and we must do all we can to protect Coloradans’ ability to receive the care they need, when they need it,” he wrote. “I signed HB 08-1203 because it requires the Attorney General to consider a given hospital transaction’s potential to affect the availability and accessibility of health care services in relevant communities.”
Read Gov. Ritter's letter
Send a thank-you letter to Gov. Ritter
06.02.08: Assemblywoman Patty Berg’s statement on Right to Know Act
California Assemblywoman Patty Berg delivered an impassioned speech on why her fellow legislators should vote for the Right to Know End-of-Life Options Act.
She explained that when patients are informed of their legal end-of-life options, they can greatly improve their chances of getting hospice or other comfort care during their final days.
“We know from research that terminally ill patients don’t always get all the information they want,” she said. “For example, even though many terminally ill patients would benefit from months and months of hospice care, nearly two out of three end up getting just a few weeks of it in California. One in four patients won’t receive this in-home help until the last five days of their lives.”
05.28.08: Assembly votes to give Californians the Right to Know
The California Assembly voted 41 to 32 in favor of the Right to Know End-of-Life Options Act on Wednesday in a huge step forward for patients’ rights.
The vote, mainly along party lines, came after powerful testimony delivered by legislators that included the bill’s supporters and co-sponsors, Patty Berg and Lloyd Levine. Many gave personal accounts of family members and loved ones who suffered painful deaths.
Berg and Levine explained the need for patients to know all of their options so they can live their last days in comfort.
Berg pointed out many physicians see death as a professional failure, and therefore terminally ill California patients do not always benefit from care options such as hospice.
The bill garnered approval not only from supporters but also lawmakers who were opposed to previous end-of-life care legislation.
One of these included co-author Gene Mullin. “This is a very good bill,” he said. “It allows people to know what their options are; it does not promote end-of-life activities in any way; it is supported by the CNA.”
The Right to Know Act now heads to the California Senate for consideration.
05.21.08: California Assembly to vote on Right to Know Act
The California State Assembly is slated to vote on the Right to Know End-of-Life Options Act. The bill cleared its first hurdle on April 29 after the Assembly Judiciary Committee voted 7-3 in favor.
The Right to Know Act requires health care providers to counsel patients on the range of options available, upon a terminally ill patient's request.
These options include hospice care; voluntary stopping eating and drinking; refusal or withdrawal of life-sustaining treatments; palliative care; and palliative sedation, or inducing unconsciousness to relieve unbearable pain.
The bill will serve as a national model for end-of-life care.
"Dying patients needlessly suffer due to a lack of essential information," said Barbara Coombs Lee, president of Compassion & Choices. "As a result, many spend their last days in agony. Too many patients make the most important decision of their lives -- how they will live their final days -- without being fully informed of their legal rights."
Compassion & Choices will post vote results immediately following the legislative session.
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