A California Superior Court today accepted a friend-of-the court brief filed by Compassion & Choices urging the court to reject a request for a preliminary injunction to stop implementation of the state’s new medical aid-in-dying law.
The End of Life Option Act gives terminally ill adults the option to request a doctor’s prescription for medication they can decide to take to die peacefully and quickly in their sleep if their end-of-life suffering becomes unbearable. The law took effect June 9.
The preliminary injunction request follows a failed attempt to get a temporary restraining order in a suit to overturn the law by the Life Legal Defense Foundation, American Academy of Medical Ethics and several physicians. The Riverside County Superior Court currently is scheduled to hold a hearing to consider the injunction request on July 25.
“In the absence of medical aid in dying allowed by the End of Life Option Act, patients and families will be forced to live through painful and prolonged deaths,” states the brief filed by John Kappos, a Newport Beach partner in the law firm of O’Melveny & Myers LLP, and Compassion & Choices National Director of Legal Advocacy Kevin Díaz. “A preliminary injunction should be denied because the balance of harms weighs heavily in favor of terminally ill patients…and against Plaintiffs’ unsubstantiated and speculative allegations of harm. Their alleged harm is pure imagination.”
“Plaintiffs admit—as they must—that the Act was designed with ample procedures that protect patients from exactly those harms that Plaintiffs are concerned with,” the brief concludes. “Plaintiffs provide absolutely no evidence showing physicians would abandon their medical ethics and professional standards because the Act provides them with some kind of immunity. Plaintiffs have failed to support their application with any credible evidence that they—or anyone—will be harmed if the Act goes into effect.”
Miguel Carrasquillo, 35, didn’t die as he wanted. He died in pain after enduring months of agony.
Miguel wanted doctors to end his pain by helping him to die, but none of them could legally do anything for him. Miguel lived in Puerto Rico, where local laws prohibit physician-assisted death. And he lacked the resources to go to one of the four U.S. states — Oregon, Washington, Montana and Vermont — where, with a doctor’s help, terminally ill patients are allowed to end their own lives. (In June, California became the fifth state where this practice is legal.)
In those states, doctors can give a terminally ill patient a prescription for a lethal dose of drugs, along with pertinent information about that option. The patient then takes the drugs to end his or her life. This practice is different from euthanasia, in which a doctor actively takes part in ending a patient’s life (as the late Dr. Jack Kevorkian did several times).
I spoke with Miguel via satellite from Puerto Rico a couple of weeks before his death. He was extremely tired. His voice was barely audible as he explained the terrible news he received from doctors in March 2012. “I had a terrible headache, and became totally paralyzed on my right side,” he told me. After many tests and biopsies, the medical diagnosis was devastating: Miguel had an inoperable brain tumor. “The tumor had already metastasized all over my body, and I didn’t know,” he said.
At the time of his diagnosis, Miguel lived in Chicago and worked as a chef. Shortly afterward, he decided to return to Puerto Rico to spend his last days with his parents.
As his condition worsened, he fell into an unbearable daily routine. He would wake up in pain, take painkillers, fall asleep, then wake up with more pain. The cycle was devastating. Eventually, he concluded that he would seek to end his agony and die on his own terms.
“People say [assisted death] is taboo,” he told me. “For me, it isn’t — can you even imagine what it’s like to be constantly suffering?” he asked. “Why can’t I make the decision, as a human being, to take my own life, if that life is mine?”
That was Miguel’s philosophy. But the Catholic Church — and most Puerto Rican politicians — didn’t agree with him. An overwhelming number of Puerto Ricans identify as Catholics, including Miguel’s mother, Nilsa Centeno.
“The Catholic Church asks me to have faith,” she told me as she sat next to her son. “To die with dignity is a sin for them — but if a person has no alternatives, why isn’t assisted death an option?” she said. “We should be able to decide how we go.”
Nilsa also spoke about the anguish of watching her own child die. “it’s hard, very hard,” she said. “Nobody can imagine the pain that he is feeling.”
I asked Miguel if he was ready to die. “Oh yes,” he told me. “I’ve been ready for a couple of months now.”
When we spoke, he seemed resigned to the fact that he was out of options. He had no choice but to wait for the end. “I’ve accomplished all that I had to accomplish,”he said. “I spend my life sitting around, taking drugs; I’m rarely hungry. It’s very sad, very sad.”
At one point during our discussion, Miguel closed his eyes. He was very tired and could barely speak. The interview had taken a toll on him — it would be the last he gave before dying. I asked why it was so important for him to speak about his situation. He said that physician-assisted death is an issue that we should be able to discuss openly.“This isn’t a bad thing. Your life is your life.”
Every night before bedtime, Miguel said, he and his mother used to say goodbye “with a kiss and a hug” — since it was possible that he would never wake up again.
One Sunday morning last month, Miguel didn’t wake up. Only then did his suffering end.
This conclusion seemed plausible at the time. Then, only four states with overwhelmingly white populations – Oregon (76%), Washington (70%), Montana (90%), and Vermont (94%) – had authorized terminally ill adults to have the option to obtain prescription medication they can decide to take to shorten their dying process if it becomes unbearable.
Charmaine Manansala, Political Director, Compassion & Choices
The survey’s findings included:
In California, 75.6% of non-Hispanic whites, 74.3% of Asians, and 71.6% of Hispanics supported PAD compared to 59.6% of African Americans.
In Hawaii, 77.9% of non-Hispanic whites, 77.5% of Asians, 75.3% of Native Hawaiian/Pacific Islanders, and 63.6% of Hispanics supported PAD.
Within Asian Americans, Chinese most favorably supported PAD (82.7% in California and 85.5% in Hawaii), followed by Japanese (74.6% in California and 76.5% in Hawaii) and Filipino Americans (67.7% in California and 76.5% in Hawaii).
It is remarkable that in both states, even participants who were deeply spiritual, a majority of 52% supported PAD.
The effects of gender and ethnicity did not reach statistical significance in terms of attitudes toward PAD. Both genders and all racial/ethnic groups in both states equally supported PAD.
The Asian support in Hawaii for PAD (a/k/a medical aid in dying) is especially significant because this demographic group represents the majority (53%) of the state’s population.
The survey concluded:
“This study shows that in the ethnically diverse states of California and Hawaii, faith/religion/ spirituality and age are major influencers of attitudes toward PAD and not ethnicity and gender. Even in the subgroups least supportive of PAD, the majority supports PAD.”
Mary Steiner has been the campaign manager for Compassion & Choices Hawaii since 2012.
Charmaine Manansalais the national political director and former California political and field director for Compassion & Choice, the nation’s largest organization advocating for the full range of options for end-of-life care. She previously was a senior policy analyst for the White House Initiative on Asian Americans and Pacific Islanders.
You can read the full story about the Journal of Palliative Medicine online survey by clicking here.
The following message was sent to our North Country, New York supporters on Monday, June 27:
I’d like to invite you to a Tupper Lake film screening of How to Die in Oregon, an award-winning documentary that offers a moving portrait of people accessing medical aid in dying.
As you know, our campaign to bring the option of medical aid in dying to terminally ill adults in New York has been more successful than ever this year. And now, we’re coming to the North Country to organize the grassroots teams we’ll need to succeed when the legislature goes back into session.
After the film, we’ll discuss our New York campaign, the Medical Aid in Dying Act being considered by the legislature, and what you can do to help pass this crucial legislation.
WHAT: Film screening of How to Die in Oregon and discussion WHEN: Wednesday, July 6, 2016, 4-7:30 pm. Film begins at 4:00 p.m., discussion begins at 6:00. WHERE: Goff-Nelson Memorial Library, 41 Lake St, Tupper Lake, NY 12986
This meeting will give you the opportunity to meet other advocates in the area, share your personal stories, and find out what you can do to improve New Yorkers’ control over their end-of-life care. Light refreshments will be served.
You’ll also have the opportunity to help form the North Country action team. An action team is a local group of supporters who meet regularly and work to build support for end-of-life options. Joining our campaign as a member of the action team will allow you to have a close-up view of local activities and a voice in our strategy in the region.
How to Die in Oregon won the Grand Jury Prize for Documentary at the Sundance Film Festival in 2011 and depicts the process of using medical aid in dying, which has been authorized in Oregon for 18 years.
If you’ve already seen the film, or you can’t make it for the start of the event, please feel free to join us for the discussion portion of the event at 6:00 p.m.
The following message was sent to our Indiana supporters on Friday, June 24:
I’d like to invite you to Compassion & Choices Indiana’s annual meeting on July 9.
At the event, we’ll elect board members and present our plans for the upcoming year, which include publicizing relevant educational programs, making presentations to targeted groups and the general public, and other outreach.
WHAT: Compassion & Choices Indiana Annual Meeting WHERE: Shapiro’s Delicatessen, 808 S Meridian Street, Indianapolis WHEN: Saturday, July 9, 2016, 10:30 a.m.
Election of board officers for the one-year 2016/17 term will take place for president, vice president, secretary, and treasurer. The four-year terms for four of the current directors expire at the end of June, and they will either be re-confirmed or replaced by new directors up to the maximum allowed number of 15.
All Compassion & Choices Indiana supporters are encouraged to participate and are eligible to be nominated to the board. No RSVP is necessary.
Our supporters received this message today from Patricia A. González-Portillo, Compassion & Choices’ national Latino communications manager:
I want to tell you the story of Miguel Carrasquillo, an amazing young man from Puerto Rico. In the face of terminal illness, he spent his final days fighting for the rights of other dying individuals. Sadly, Miguel died earlier this month without the rights he fought so hard for.
Miguel was diagnosed with an aggressive brain tumor in 2012, when he was only 30 years old. He fought the cancer for years, undergoing painful procedures to try and find a cure. Tragically, the tumor continued its growth, and after receiving a terminal prognosis from his doctors, Miguel left his home in Chicago to return to his native Puerto Rico and spend his remaining time with his family.
Since medical aid in dying is not authorized in Illinois or in Puerto Rico, he was forced to endure unrelenting pain from headaches and seizures during his last days. This is why Miguel became a vocal advocate for expanding end-of-life options and urged lawmakers in every U.S. state and territory to support medical aid-in-dying legislation.
I had the honor of knowing Miguel and his family, and I saw firsthand the excruciating pain he suffered throughout his final weeks. I saw the anguish on his mother’s face as she watched her only son suffer. And I saw Miguel’s commitment to help expand options for all, despite his own severe pain.
Miguel accomplished so much at the end of his life by challenging taboos surrounding death — and by extension, medical aid in dying — that persist within the Latino culture. He urged his community, and the entire nation, to speak openly to their doctors about the kind of care they want at the end of life.
Miguel’s friends and family are eager to continue his legacy and push for medical aid in dying nationwide. His mother said this: “I promised my son that I would not stay quiet about the need for the option of medical aid in dying. I don’t want anyone to suffer needlessly, as Miguel and our family had to.”
Please click the link below to add your name to our card for Miguel’s family:
Big news: this week, the American Medical Association House of Delegates supported a resolution to “study aid in dying as end-of-life option.”
After 30 years of opposition to “euthanasia and assisted suicide,” the AMA’s Council on Judicial and Ethical Affairs will respond to the request to consider (1) data collected from the states that currently authorize aid in dying and (2) input from physicians who have provided medical aid in dying to qualified patients. A report with recommendations regarding a possible neutral stance on aid in dying will be presented to the 2017 House of Delegates.
The following email was sent to our New York supporters on Friday, June 17:
Today marks the end of New York’s 2016 legislative session.
As you know, this year we brought lawmakers to the table to negotiate the Medical Aid in Dying Act. Thanks to more than 1300 supporters like you who contacted your legislators, the New York Assembly Health Committee passed the Medical Aid in Dying Act, our biggest victory in the state yet.
This afternoon, we expect lawmakers to head back home to their districts. Many important bills, including the Medical Aid in Dying Act, will not see a vote by the legislature this year.
This is far from the end of our fight; we’re just hitting our stride. I will host a call on June 29 to fill you in on our plans for the summer and our strategy to come back even stronger next session. I’ll be joined by Senator Diane Savino and Assemblymember Amy Paullin, the sponsors of the Medical Aid in Dying Act, who will give an update on their legislative efforts and strategy for next session.
WHAT: Compassion & Choices New York Statewide Campaign Telephone Town Hall WHEN: Wednesday, June 29 at 7:30 p.m. WHERE: Call-in number: 310-372-7549, access code 401746
Even though we’ve come further than ever before, we still have so much work ahead of us before we can count on support from the majority of lawmakers. That’s why we’re pushing ahead with an aggressive strategy for the summer.
On the call, I’ll talk about our top priorities for the summer, including strengthening our action teams, speaking to legislative candidates about supporting aid-in-dying legislation, visiting lawmakers at their district offices, and recruiting your family’s doctors to join our efforts.
But unlike Brittany Maynard, the 29-year-old woman with terminal brain cancer who inspired the passage of California’s new End of Life Option Act, I am unlikely to die peacefully from my brain tumor as she did after moving with her family to Oregon to utilize its death-with-dignity law.
I did not live in a U.S. state or territory that gives terminally ill adults like me the option to get a prescription for aid-in-dying medication I could decide to take to die peacefully, as Brittany did, to end unbearable suffering.
As a result, I lived my last days with every horror that Brittany feared most: mind-splitting headaches, blackouts, blindness, convulsions and electric shocks from the incurable brain tumor that spread to my liver, stomach, testicles and other vital organs.
I didn’t want the tumor to dictate how I would die. I wanted to die the way I lived, with purpose and intention. I wanted to die gently and avoid the terrifyingly painful death that doctors said I would experience.
My life didn’t have to end this way. I did not commit a crime to live in a prison with a sentence of intolerable suffering.
Unfortunately, medical aid in dying is not an authorized option in my native Puerto Rico, where my Catholic parents cared for me during the last days of my life.
I was diagnosed with glioblastoma multiforme, a deadly form of brain cancer, in 2012. I endured invasive, agonizing procedures to unsuccessfully try to cure the cancer. And the morphine connected to my sciatic nerve did little to alleviate my pain.
For over a year, I watched Brittany Maynard’s videos. I researched moving to one of the states that authorize medical aid in dying — Oregon, Washington, Montana, Vermont or California, where the End of Life Option law took effect on June 9.
But my family didn’t have the resources Brittany did to move 2,000 miles or more to one of these five states. I had to live and die with this horrible pain.
It is clear we have an issue in our country, where it is not affordable or practical for the vast majority of terminally ill people to move to another state far away from their home, establish residency and find a medical team in order to die peacefully.
We shouldn’t have to die with unbearable pain. We shouldn’t have to suffer.
So we must take action. We must email our legislators and urge them to support broader end-of-life options.
We must urge our doctors to support their patients’ last wishes, whether they agree with them or not.
And we Latinos must drop our cultural taboo around discussing death and the option of medical aid in dying.
I had numerous conversations with God throughout my life, especially during my illness. I could not understand why people judged me as a sinner for wanting to die peacefully rather than enduring severe seizures and excruciating pain until the end of my life.
As a Catholic, I was taught it is wrong for anyone to judge someone else. Until you’ve walked a mile in another person’s shoes, you should not stand in the way of them having this option.
“Latino Brittany Maynard”
I was proud to learn I was Compassion & Choices first terminally ill Latino advocate for medical aid in dying when I recorded videos in English and in Spanish to urge legislators in U.S. states and territories, including Illinois and my native Puerto Rico, to pass medical aid-in-dying bills.
Between agonizing headaches, electric shocks and convulsions, I gave TV and print interviews, and wrote op-eds published by numerous media outlets demanding the option of medical aid in dying.
Some media outlets referred to me as the “Latino Brittany Maynard.”
Fighting for options
I am no longer alive to tell my story.
But my mama will not go silent. She will continue to be a loud, powerful voice so other terminally ill Latinos like myself hopefully don’t have to suffer as I did. We need to keep fighting and fighting until somebody listens to us.
Miguel Carrasquillo was a 35-year-old chef who lived in New York City from 2004 to 2006. He wrote this op-ed two days before he died from cancer on June 5 and requested it be published posthumously.
Compassion & Choices praised the American Medical Association (AMA) for considering a resolution that will lead to a study of aid in dying as an option for terminally ill adults. The AMA House of Delegates voted on Monday to refer Resolution 015 – Study aid-in-dying as end-of-life option – to the AMA Board of Trustees in light of the continuing evolution of thinking in this area.
In keeping with the decision to refer Resolution 015, it is anticipated that the AMA Board of Trustees will ask the Council on Ethical and Judicial Affairs (CEJA) to examine AMA ethical policy prohibiting physician participation in assisted suicide (Opinion E-2.211). In keeping with Council practice, CEJA will review relevant literature and data, and deliberate whether current AMA ethical policy should be reaffirmed or amended in a manner yet to be determined. CEJA will report the results of its deliberations to the House of Delegates at a future date.
“We thank the AMA for responding to physician and public sentiment to reexamine its position on medical aid in dying,” said Barbara Coombs Lee, an attorney who was an ER and ICU nurse and physician assistant for 25 years before she coauthored the Oregon Death with Dignity Act. “National polls show the vast majority of American doctors and their patients support medical aid in dying because they want this option to avoid unbearable suffering at the end of life.”
In addition to California, four other states authorize the option of medical aid in dying: Oregon (since 1997), Washington (since 2008), Montana (since 2009) and Vermont (since 2013).
“Oregon’s experience with our Death with Dignity Act shows terminally ill adults benefit from the law regardless if they decide to utilize medical aid in dying or not,” said Dr. Glenn Gordon, a retired surgeon, former advisory board member of Compassion & Choices of Oregon and alternate delegate for the Oregon Medical Association, who initiated the resolution. “It has encouraged earlier conversations about end-of-life care, as well as better and more frequent use of hospice and palliative care. Hospice care has improved markedly in the past couple of decades and works cooperatively when patients request the option of medical aid in dying.”
After open hearings on Resolution 015, a reference committee of the House of Delegates concluded:
“Support for this resolution was largely in favor of the Council on Ethical and Judicial Affairs studying the issue of medical aid-in-dying. The testimony spoke to the fact that many states have proposed or adopted legislation to legalize the practice, introducing a potential conflict for our members in those states. Additional testimony recognized the need for our American Medical Association to respond to this highly relevant and expanding issue that may impact medical practice, looking to the Council for guidance. With these considerations in mind your Reference Committee recommends that Resolution 015 be referred.”
The House of Delegates adopted by acclamation the reference committee’s recommendation to refer Resolution 15.