Changing established institutions can be a slow and difficult undertaking, but it’s necessary for real progress. The American healthcare system is one of these institutions, and Compassion & Choices has been working with physicians strategically for years to move it toward a more person-centered model — a hallmark of which is medical aid in dying. So, after much perseverance, we’re thrilled to be seeing substantial shifts in the official positions of medical societies, powerful authorities on healthcare standards and practice, across the nation.
Nine medical societies have dropped their long-held opposition to medical aid in dying and adopted neutral or supportive stances — eight of them since June 2015. To date, this includes:
» Oregon Medical Association (1994)
» California Medical Association (2015)
» New York State Academy of Family Physicians (2016)
» Colorado Medical Society (2016)
» Maryland State Medical Society (2016)
» Medical Society of the District of Columbia (2016)
» Nevada State Medical Association (2017)
» Maine Medical Association (2017)
» Minnesota Medical Association (2017)
The New York Academy of Family Physicians, in fact, moved from a neutral to a supportive position on medical aid in dying this past summer, noting that a “position of neutrality can have negative consequences for patients and can be viewed as patient abandonment.”
Supporting the authorization of medical aid in dying is commensurate with the family physician’s desire to empower our patients not only in their pursuit of wellness, their management of chronic disease, but also the alleviation of suffering when faced with a terminal illness.
– Dr. Sarah Nosal, President of the New York State Academy of Family Physicians
Such turnarounds make room for the ever-growing number of doctors who support medical aid in dying — by a margin of two to one, according to December 2016 Medscape polling data. Medical society approval or neutrality also reduces barriers to access for patients. Even more importantly, this increasing acceptance represents a sea change in the political dynamics around our issues and will help improve the overall delivery of care.
Doctors for Dignity, an initiative of Compassion & Choices, is a nationwide network of physicians who support patient autonomy at the end of life.
To join Doctors for Dignity or to learn more, visit CompassionAndChoices.org/D4D.
On June 16, a superior court ruled that a lawsuit to overturn the California End of Life Option Act will proceed to trial to determine the case’s merits.
Last year, the court accepted a friend-of-the-court brief filed on behalf of Compassion & Choices urging it to deny the plaintiffs’ motion for a preliminary injunction. Thankfully, the court rejected the motion, as well as a prior motion for a temporary restraining order, so the law remains in effect for now.
“Overturning the End of Life Option Act would have devastating consequences for terminally ill Californians and their families,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices.
Kligler v. Healey, Massachusetts
On June 5, a Massachusetts judge rejected a motion to dismiss a lawsuit filed by Compassion & Choices asserting the state constitution protects, and existing state law does not bar, mentally capable, terminally ill adults from getting a prescription for aid-in-dying medication.
“My wife, Cathy, and I are elated with this initial ruling,” said lead plaintiff Dr. Roger Kligler, who suffers from stage 4 metastatic prostate cancer.
“We are pleased with the court’s decision because it will allow our clients to challenge the constitutionality of the law without having to take actions that could risk prosecution by an aggressive district attorney,” said John Kappos, a partner at the O’Melveny law firm, which together with the Morgan Lewis law firm and Compassion & Choices represents the plantiffs in the case. “We need the court to clarify the law because the prosecution threat is real to physicians who provide medical aid in dying to terminally ill patients … and patients’ senseless suffering without this option is equally real.”
To learn more about Compassion & Choices in the courts, visit CompassionAndChoices.org/ legal-resources.
In 2016, as my friend Miguel Carrasquillo lived his last days, I reached out to Univision anchor and Emmy Award-winning journalist Jorge Ramos. Miguel, a 35-year-old former chef who had lived in New York and Chicago, was dying of brain cancer. Miguel had recently recorded bilingual interviews to urge fellow Latinos to support medical aid in dying to end the kind of unbearable suffering he was enduring because the option was not available to him.
Jorge’s crew arranged a satellite interview from Puerto Rico — an interview that would be Miguel’s last and a platform to reach millions of Latinos before his death on June 5, 2016. Jorge remembers his time with Miguel in great detail. “This has been one of the toughest interviews I have had to do,” Jorge tweeted afterward.
Miguel proudly referred to himself as the “Latino Brittany Maynard” because he was inspired by the 29-year-old Californian who also had terminal brain cancer and who had moved to Oregon to access its Death With Dignity law in 2014. Latino support for medical aid in dying has dramatically increased in the United States since Miguel spoke out for this end-of-life option. Bills to authorize medical aid in dying have been introduced in more states with large Latino populations, including Colorado, where voters passed a law in 2016. In addition, more Latino lawmakers nationwide are sponsoring bills. But getting here has
not been easy.
Winning in California
In 2014, Compassion & Choices launched a Latino media campaign in California, where Spanish-speaking residents represent 38 percent of the state’s population. Their support is critical to passing any legislation. Our goal was to educate and mobilize Latino voters to garner their support for passing California’s End of Life Option Act.
We tailored our bilingual communications to create personal stories that would connect with Latino voters and inoculate them against the Catholic Church’s fear-based misinformation campaign. We successfully pitched stories featuring our Latino advocates, resulting in multiple interviews with national Spanish-language media giants Univision, Telemundo and La Opinión. We also recruited labor leader and civil-rights icon Dolores Huerta and actor, director and activist Edward James Olmos.
And we got Jorge Ramos on board.
Jorge, the voice of nearly 12 million Latinos, wrote special segments that exclusively focused on medical aid in dying. He publicly endorsed the California End of Life Option Act in an interview with Dan Diaz, Brittany Maynard’s husband, before the bill was signed into law in October 2015. Jorge reiterated his support for laws authorizing medical aid in dying by writing an editorial in support of Brittany’s decision to die peacefully.
By the end of the California campaign, Compassion & Choices had reached millions of people via Latino media outlets that had once been reluctant to cover our issue because their audience is predominantly Catholic. And more importantly, our outreach spurred a national conversation on end-of-life options among Latinos. But we needed more.
“One of the Toughest Interviews”
Jorge Ramos has been a widely respected journalist for over three decades. Millions of people tune in to his daily newscast and weekly political show, “Al Punto” (“To the Point”). In recent years, Jorge’s audience has exceeded those of each of the four main English-language networks. In 2015, the 59-year-old Mexican journalist, known as the “Walter Cronkite of Latin America” or the “voice of the voiceless” for immigrants like him, was on the cover of Time magazine as one of its “100 Most Influential People.”
In March 2016, I traveled to Puerto Rico to meet Miguel Carrasquillo. Weeks later, Compassion & Choices launched a national bilingual campaign to introduce the world to Miguel. Miguel’s story was featured in People en Español, and overnight he became a household name for journalists who referred to him simply as “Miguel.” Then in May, I arranged what would become Miguel’s last interview on Jorge’s show — one that Miguel thought of canceling that morning because he could barely open his eyes. But Miguel proceeded, at times mumbling his responses. Jorge’s voice cracked when he said goodbye to Miguel, who died 10 days later. “Miguel Carrasquillo, 35, didn’t die as he wanted,” read Jorge’s editorial, which ran throughout the world in English and Spanish. “He died in pain after enduring months of agony.”
Latino Support for Medical Aid in Dying
When Colorado voters passed the End-of-Life Options Act in November 2016, a majority of Latinos supported the legislation, according to exit polling conducted for the Associated Press. As Miguel’s story continued to resonate among this population, we kicked off a bilingual campaign in Colorado to educate terminally ill Coloradans, families and medical providers about the benefits and requirements of the state’s new medical aid-in-dying law. Weeks later, we launched a Latino campaign with Miguel’s mom, Nilsa, in New York during a Dia de los Muertos event to honor departed New Yorkers.
In December 2016, we learned that 69 percent of Latinos support medical aid in dying, according to an online survey conducted by LifeWay Research. In March 2017, People en Español published a two-page spread in advance of the anniversary of Miguel’s death highlighting the new statistic. The story also noted the support for medical aid in dying by popular Mexican actor Mauricio Ochmann, who recorded public service announcements for Compassion & Choices.
On June 5, 2017, Compassion & Choices released bilingual videos to commemorate the one-year anniversary of Miguel’s death. Nilsa and I traveled to Miami for interviews with Latino media outlets, including CNN en Español and the Telemundo network. Our final stop: the Univision studios for an interview with Jorge.
Jorge spoke about Miguel’s legacy and the six states with large Latino populations that have either passed or introduced laws to authorize medical aid in dying since Miguel’s death (Arizona, Colorado, Nevada, New Jersey, New Mexico and New York). Latino lawmakers are sponsors of legislation in four of those states.
After the interview, Jorge embraced Nilsa and thanked her for continuing Miguel’s mission. “Miguel made a difference,” Jorge said, as Nilsa fought back tears. “This is his legacy. Thank you for allowing me to tell his story.”
Advocates for laws in D.C. and six states that authorize medical aid in dying are urging members of Congress to oppose a House concurrent resolution wrongly claiming medical aid in dying “puts everyone…at risk of deadly harm.” The full resolution (H.Con.Res.80), introduced by Rep. Brad Wenstrup (Ohio) and cosponsored by Reps. Luis Correa (Calif.) and Juan Vargas (Calif.), states:
“Expressing the sense of the Congress that assisted suicide (sometimes referred to as death with dignity, end-of-life options, aid-in-dying, or similar phrases) puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.”
“Medical aid in dying harms no one and benefits even those who make no request for end-of-life medication, by spurring conversations about all their end-of-life options, including hospice and palliative care, and better utilization of them,” said Dr. Omega Silva, a retired physician and former president of the American Medical Women’s Association and D.C. resident who has three cancer diagnoses. “In fact, that is exactly what the Los Angeles Times recently reported is happening in California just one year after its medical aid-in-dying law took effect. The reality is medical aid in dying strengthens the integrity of the health care system.”
“Even though the resolution would not have the force of law, we urge members of Congress to reject it. It contains false statements, and disregards their constituents who strongly support this end-of-life option,” said Compassion & Choices President Barbara Coombs Lee, who was an ER and ICU nurse and physician assistant for 25 years before she became an attorney and coauthored the nation’s first medical aid-in-dying law in Oregon in 1994. “Members of Congress from states that have authorized this safe option to end intolerable suffering peacefully, like California Reps. Correa and Vargas, are disrespectful of their own state legislative process. In addition, they are turning their backs on constituents who desperately need the peace of mind medical aid in dying provides.”
“I love life and have undergone many rounds of physically debilitating cancer treatments to extend it, but I am realistic about the fact that I have a deadly disease,” said D.C. resident Mary Klein, who only wants the option of medical aid in dying to peacefully end her suffering if it becomes intolerable. “While some people and members of Congress have the right to object to medical aid in dying, they have no right to make my end-of-life care decisions, just as I have no right to make theirs.”
In addition to D.C., six states have authorized medical aid in dying: California, Vermont (via legislation in 2015 and 2013), Colorado, Oregon, Washington State (via ballot initiatives in 2016, 1994 and 2008) and Montana (via a Montana Supreme Court ruling in 2009). Collectively, D.C. and these six states represent 18 percent of Americans and have 40 years of combined experience with no documented misuse of this medical practice. Only mentally capable, terminally ill adults with six months or fewer who can self-ingest the medication can qualify for medical aid in dying.
C&C National Constituency Director Brandi Alexander and activist Mary Klein
Last Thursday, D.C. Congresswoman Eleanor Holmes Norton hosted an event at the Congressional Black Caucus Foundation’s 47th annual legislative conference to detail how Congress is usurping the District of Columbia’s autonomy to make its own laws. She introduced Compassion & Choices National Constituency Director Brandi Alexander to speak about the U.S. House of Representatives’ recent passage of a must-pass appropriations bill to fund the government with an amendment to repeal the D.C. Death with Dignity Act.
Brandi provided national and state polling data showing that medical aid in dying is supported by Americans across the ethnic, political, regional, religious and racial spectrum, including African-Americans. She also explained that medical aid-in-dying laws help many terminally ill adults in communities of all colors, not just the small number of people who decide to utilize it as an end-of-life care option.
“We don’t like to talk about dying or end of life, even when we are facing a terminal illness, particularly in the African-American community. So these laws help foster that relationship with the medical community so that we can start dying in better situations.” Brandi said. “ Even if this option doesn’t fit your value system … just having the conversation about all end-of-life care options alone has impacted the medical community and how people are dying in states where medical aid in dying is authorized.”
Brandi’s words underscored the fact that the majority of D.C. residents (67%) support medical aid in dying, including five of the six African-American councilmembers who approved the law in a 11-2 vote by the full D.C. Council.
She also noted that C&C is aiding efforts by D.C. officials to ensure all terminally ill residents have access to this peaceful option — even as Congress pursues its gross overreach to void the law, although it has taken effect. The Senate still needs to approve the appropriations bill, so we are working around the clock to ensure that the amendment to repeal the D.C. Death with Dignity Act isn’t included in the final version.
D.C. lawmakers and residents want this option for their city, and the federal government has no place interfering with their local laws.
On September 19, the American College of Physicians (ACP) Board of Regents reaffirmed the organization’s longstanding opposition to “assisted suicide,” despite the fact that medical aid in dying has been practiced by hundreds of physicians in six states for more than 30 cumulative years. Read the Paper.
In contrast to the ACP, a growing number of professional medical associations have withdrawn opposition to medical aid in dying in favor of engaged neutrality, including the American Academy of Hospice and Palliative Medicine and the American College of Legal Medicine (ACLM).
ACLM’s Policy on Aid in Dying states: “… the ACLM recognizes patient autonomy and the right of a mentally competent, though terminally ill, person to hasten what might otherwise be objectively considered a protracted, undignified, or painful death, provided, however, that such person strictly complies with law specifically enacted to regulate and control such a right…”
Doctors for Dignity concurs with the views expressed by Dr. Stuart Youngner in his commentary, A Call for a Patient-Centered Response to Legalized Assisted Dying, published in the Annals of Internal Medicine last November. Given the fact that more and more jurisdictions are authorizing medical aid in dying, “it is problematic that professional organizations have left physicians without sufficient support and guidance on how to provide the best possible care to dying patients seeking to exercise this legal right …” Engaged neutrality allows for diverse views (including the physician’s right to refuse to participate) and is “key for responsible patient care…”
The American Medical Association, the American Academy of Family Physicians and a number of state medical societies continue to review their positions on medical aid in dying. You can help by contacting your local society president and asking him or her to support engaged neutrality.
Some doctors in California felt uncomfortable last year when a new law began allowing terminally ill patients to request lethal medicines, saying their careers had been dedicated to saving lives, not ending them.
Many healthcare systems designed protocols for screening people who say they’re interested in physician-assisted death, including some that were meant to dissuade patients from taking up the option.
But physicians across the state say the conversations that health workers are having with patients are leading to patients’ fears and needs around dying being addressed better than ever before. They say the law has improved medical care for sick patients, even those who don’t take advantage of it.
“One doctor said we should be able to order the End of Life Option Act without the drugs,” said Dr. Neil Wenger, director of the UCLA Health Ethics Center. “It really has created a new standard for how we ought to be helping people at the end of life.”
California last year became the fifth state to allow people with terminal illnesses to request pills from their doctors to end their lives. In the first six months the law was in effect, 111 terminally ill patients ended their lives that way, state officials said.
The law requires that two doctors agree that the patient has an incurable illness with no more than six months to live and has the mental capacity to make such a decision. Many health systems set up additional protocols for patients who express interest in the law.
At UCLA, they’re required to talk to psychologists or social workers, which often reveals concerns that weren’t being addressed, said Anne Coscarelli, a clinical psychologist who heads the team of health workers that meets with these patients.
The health workers ask patients a variety of questions: what scares them, how they’re feeling, what they’re worried about, what defines their quality of life.
Sometimes doctors end up adjusting patients’ medicines or treatments because patients hadn’t before expressed how much pain they were in. Some patients decide to go on hospice earlier than they would have otherwise.
“Not everyone who’s talking about this is saying, ‘I want this medication.’ They’re saying, ‘I’m suffering’ or ‘I’m worried about suffering’ and that becomes the conversation starter … and it might not come up in any other way,” Coscarelli said.
First 6 months of aid-in-dying in California
191 people prescribed lethal medications
111 died from taking lethal medications
Of the 111, 87% were at least 60 years old
96% had health insurance
84% were receiving hospice or palliative care
59% had cancer
Sources: California Department of Public Health
Approximately 100 patients at UCLA began the process to receive a prescription in the first 12 months the law was in effect, but only about a quarter ended up getting prescriptions, Wenger said.
Coscarelli said psychologists and social workers have also helped patients come to terms with dying. For some, it can be as simple as getting their legal or financial affairs in order.
Others have confronted the question of what legacy they will leave behind. Some record video messages for their loved ones. One woman put together a folder for each of her children and grandchildren filled with stories about them and stories about her, Coscarelli said.
“That becomes something that we can introduce people to in these conversations, whereas they might not have ever thought about it,” she said.
Doctors have sometimes struggled to talk about dying with patients. According to a 2015 Kaiser Family Foundation survey, 89% people believe doctors should discuss end-of-life care with patients, but only 17% had had such a conversation with their health care provider.
But now, physicians say patients are curious about the law and asking about it, which provides them an opportunity to have these frank discussions.
A study from Oregon, which legalized aid-in-dying 20 years ago, found that though only 1 of 640 terminally ill patients took lethal medications, 1 of 50 talked to their physician about it and and 1 in 6 talked to their families about it.
“There’s a lot of need for talk, and talk is something that’s bigger and broader than the actual aid-in-dying itself,” Coscarelli said.
Dr. Bob Uslander, who specializes in palliative and hospice care, said that at a recent speaking event in San Diego, he fielded dozens of questions about not just physician-assisted death but also other end-of-life care options.
He said he thinks the unprecedented interest spurred by the law will lead to more thoughtful planning around death, such as the creation of more advanced care directives.
“We’ll get more people to actually make their wishes known and document their wishes,” Uslander said.
The law still faces heavy opposition from some corners. Many doctors still don’t want to write the prescriptions. A group of doctors has also filed a lawsuit saying that the law essentially decriminalizes assisted suicide and strips terminally ill patients of their protections under state law. A judge ruled earlier this summer that the case would be allowed to go to trial.
Doctors aren’t required to participate in the law and health systems can opt out. At Catholic and church-affiliated hospitals, which make up 13% of all acute care hospitals in the state, doctors are not allowed to prescribe such medications.
But even at those institutions, requests for the medicines have sometimes helped identify issues that health workers can assist with, said Lori Dangberg, vice president of the Alliance of Catholic Health Care. Patients fear they’ll be a burden on their families, or are scared of what’s to come, she said.
The Catholic and church-affiliated hospitals have also begun a collaboration with local dioceses to hold workshops on end-of-life matters, she said. The Archdiocese of Los Angeles now offers a workshop on end-of-life care including ethics, palliative and hospice care as well as pastoral care at the end of life.
“I think what this new law has done, it’s really a reminder we need to do a much better job with caring for people through the end of life,” Dangberg said.
Dr. Stephen Lockhart, chief medical officer for Sutter Health, said that before the law went into effect, doctors received training in how to talk about aid in dying, but also in other end-of-life options. They had their questions answered by medical ethicists.
He said that more patients are broaching the topic with their physicians than before. Even patients who have wills or advanced care directives had not always planned out their end-of-life wishes with their families.
“It takes a certain amount of courage to step into those conversations and … we have people now stepping into those conversations and they now have the support to move through them,” he said.
A Los Angeles Times article this week highlights a fact that’s been echoed by medical aid-in-dying advocates for years — that medical aid in dying enhances care for every terminally ill adult where it is authorized — not just for the relatively few people who seek this option.
A year after the California End of Life Option Act went into effect, physicians are having more conversations with their patients about end-of-life care options and say that the law “has improved medical care for sick patients, even those who don’t take advantage of it.”
The Timesspoke to experts from the University of California Los Angeles and Sutter Health, including ethics experts, clinical psychologists and palliative care specialists. They all agreed that the law ushered in a new atmosphere of open conversation about end-of-life care options.
Dr. Bob Uslander, who specializes in palliative and hospice care, said: “We’ll get more people to actually make their wishes known and document their wishes,” which is good news for everyone.
Compassion & Choices and Patient Choices Vermont today filed a motion to strike from the court record the state’s Consent Agreement with physician plaintiffs in a dismissed federal lawsuit seeking to limit information provided to patients under Vermont law. The case sought to weaken the physicians’ duty to inform patients about all of their end-of-life care options. The groups oppose the Consent Agreement because it causes confusion about physician obligations to patients under Vermont law.
“Act 39 enables people near the end of life to intentionally live their remaining weeks or months knowing that they have the means for a simple and peaceful ending. Our goal is to make sure that all Vermonters know about this option and can make fully informed decisions about their end-of-life choices,” said Betsy Walkerman, president of Patient Choices Vermont. “That’s why it is critical that the court clarify the record and remove the Consent Agreement.”
“The Consent Agreement appeared to suggest legal and professional obligations that apply to medical providers to counsel or refer patients when they ask about medical options at the end of life somehow didn’t apply to plaintiffs,” said Kevin Díaz, national director of legal advocacy for Compassion & Choices. “The court should strike this agreement because it impacts the rights of patients by attempting to establish an unreasonably restrictive interpretation of Vermont law that directly contradicts the plain language of the statute and the court’s order.”
The plaintiffs then negotiated a Consent Agreement with the Vermont attorney general without consulting parties to the lawsuit, including Compassion & Choices and Patient Choices Vermont. The plaintiffs filed the Consent Agreement with the court on May 5, the day of the appeal deadline, without notifying the attorney general, Compassion & Choices or Patient Choices Vermont.
Plaintiffs and similarly situated medical providers do not have a legal or professional obligation to counsel and refer patients for the Patient Choice at End of Life process under [Vermont’s Patient Choice at End of Life Act (Act 39)]…the Patient’s Bill of Rights…or the Informed Consent Act…
Plaintiffs and similarly situated medical professionals have a professional obligation to provide relevant and accurate information regarding the Patient Choice at End of Life process upon a patient’s request, or if unwilling to provide the information personally, to make a referral or otherwise reasonably ensure that the patient will be able to obtain relevant and accurate information about the process … Plaintiffs hereby waive their right to seek reconsideration of, or file notice of appeal … .
In response to a request by Compassion & Choices and Patient Choices Vermont to clarify physician obligations under Vermont law as described in the Consent Agreement, the attorney general’s office wrote:
“By stipulating that ‘medical providers do not have a legal or professional obligation to counsel and refer patients for the Patient Choice at End of Life process,’ the stipulating parties are causing confusion about the rights of patients to such counseling and referral,” said David Bassett of WilmerHale, co-counsel on behalf of Compassion & Choices, Patient Choices Vermont and two Vermont patients, Benedict Underhill and Monica van de Ven (who died peacefully in January by utilizing Vermont’s Patient Choice at End of Life Act). “By limiting Act 39’s informed consent obligation — a critical aspect of the law — the Consent Agreement not only interferes with the prerogatives of Vermont courts and the legislature, but also impedes the successful implementation of the law,” concluded Bassett.
Alyson Lynch, C&C Marketing and Communications Assistant
For nearly two years, the elected officials and residents of the District of Columbia debated the D.C. Death with Dignity Act as an option for terminally ill adults to peacefully end unbearable suffering at the end of life. They held or participated in hearings, rallies, protests and town halls, and wrote to their local papers and councilmembers. After this democratic process, the D.C. Council passed the law by an 11-2 vote last November, and it went into effect July 17. Six states through either ballot initiatives, legislation or the courts have authorized medical aid-in-dying, including California, Colorado, Montana, Oregon, Vermont and Washington.
Despite widespread support for medical aid in dying across the nation and in the District, congressional opponents have made two attempts to repeal the D.C. Death with Dignity Act. Their latest power grab is an amendment, passed by the House Appropriations Committee and introduced by U.S. Rep. Andy Harris (R-MD), attempting to revoke the law. Three members of Congress from states that passed aid-in-dying laws voted against an option their constituents already have access to: Ken Calvert (R-CA), David Valadao (R-CA) and Jaime Herrera Beutler (R-WA). The residents and representatives of all authorized states should be alarmed about this congressional attack — and the implication that Congress has the right to interfere with medical aid-in-dying laws across the country.
If this amendment succeeds, it could encourage opponents to seek a nationwide ban of medical aid in dying despite the combined 40 years of successful experience with the practice in the United States. This federal intrusion isn’t unprecedented: Congress has attempted to prohibit medical aid in dying by banning the use of federally controlled substances for this purpose by introducing the Legal Drug Abuse Prevention Act of 1998 and the Pain Relief Promotion Act of 1999. The constituents from every state where medical aid in dying is authorized must fight back against this abuse of power, not only for D.C. residents, but to ensure their own right to access this end-of-life option should they want it someday.