An agitated elephant lay on the psychiatrist’s couch. “Sometimes,” his cartoon bubble said, “even if I stand in the middle of the room, no one acknowledges me.”
Worry not, Mr. Elephant. More than 100 people, many of us with graying hair and several of us with walkers, packed a room at Mission Viejo’s Norman P. Murray Center on Aug. 14 to discuss the biggest elephant-in-the-room of all:
Death, its inevitability, and how we want it to play out at the end.
This panel of experts dispensing very practical and specific advice (more on all that in a minute) was assembled by Sen. Catherine Blakespear, D-Encinitas, who is trying to push a simple bill over the finish line in Sacramento. Senate Bill 403 would lift the sunset date on California’s End of Life Option Act, which allows adults with terminal illness and six months or less to live to access Medical Aid in Dying drugs, so long as they’re of sound mind and can take the medication themselves.
MAID has been the law of the land since 2016, but is set to die its own tragic death in 2031. Of the 10 states that have such a law, California is the only one with an expiration date.
“You’ve crossed a higher hurdle, being open to having these conversations,” Mark Greenberg, an attorney and executive director of End of Life Choices California, told the crowd. “It’s your life. It’s your death. It’s your choice.”
But for how long? There were lots of questions.
Q. Will life insurance pay my heirs if I end my life via MAID? My policy specifically excludes death by suicide.
A. Yes, your heirs will get the life insurance. Hastening death with MAID is not suicide, according to the law. Your death certificate will name your underlying disease as the cause of death, Greenberg said.
Q. Wil I go to hell? Does God approve of this?
Rev. Madison Shockley, pastor at Carlsbad’s Pilgrim United Church of Christ and board member for Compassion & Choices, grinned. “My answer to that,” he said, “is, it depends.
“What is your faith? The God I serve derives no benefit from our suffering at the end of the life God has gifted us. That’s my faith. That’s the religion I practice. There are others who I respect who have a different understanding, but we are a diverse population. We do not have to adhere to a religious perspective enforced on us by the state.”
The crowd burst into applause. It did so again at the mention of Brittany Maynard — the California woman who had to move to Oregon to seize control of her final days with brain cancer, pushing us to pass our own law in 2016.
Q. Some fear that the law can be abused and that vulnerable people are pushed to end their lives. Is that true?
A. Over nearly a decade, there have been no credible reports of any abuses, Blakespear said. Canada has MAID, and almost exactly the same population as California. While about 15,000 people used MAID in Canada, only 1,000 people used it in California, according to the most recent data. Further, about a third of Californians who get MAID prescriptions don’t use them — just having the option appears to give many the strength and peace of mind to soldier on. “Nine years of data show the law is working as intended and MAID is being safely practiced,” Blakespear said.
Q. Will insurance cover the costs?
A. Some providers — like Kaiser, for example — will, but faith-based providers often will not. Federal entities and insurance — like VA hospitals and Medicare — will not, so make other plans if you want to keep that option open. Some doctors and hospices also refuse to provide support for MAID, and it’s generally not administered in a hospital setting, but rather, at home. Ask questions now if you want to keep the option open later, the experts said.
Q. How much does it cost?
A. The medication itself runs about $700, but with support for patient and family, and a professional at the bedside during the process, it runs around $5,000. Dr. Donald Moore, an end of life physician in San Diego County, uses a sliding scale based on income, because MAID shouldn’t be an option just for the wealthy, he said. Right now, the overwhelming majority of Californians choosing MAID are white and had at least some higher education, according to state data.
Q. How does it, you know, actually work?
A. Moore told the story of Catherine, a 77-year-old woman with advanced breast cancer. She had fought, exhausting all possible treatments, but her cancer spread. “She knew she wouldn’t want to suffer interminably,” Moore said. “She wanted to write the final page of her story.”
Her decision was not made in haste or isolation, he said. She saw a second doctor to confirm her diagnosis. She did research. She made two verbal requests, at least 48 hours apart, as the law requires. She made a written request, signed by two witnesses who confirmed that the request wasn’t coerced, as the law requires. She explained her decision to her family. “It brought her peace,” Moore said.
On the morning of her choosing, Catherine’s family gathered at her home. They told funny stories, laughed, and cried. When she was ready, she took the anti-nausea drug. After about 20 minutes, she drank the potion from which she would not wake. “Her passing was serene and surrounded by love,” he said. “It’s not about hastening death, but reclaiming life in the final moments.”
MAID isn’t for everyone, but it’s a way for those who choose it to align death with the values they lived in life, Moore said. And it’s a reminder that medicine is not just about prolonging life, but about compassionately approaching its end.
“I’ve seen the profound peace of this process, not just for patients, but for their families,” Moore said. It is no magic elixir, however; no potion can completely wipe away the grief of loss. It’s important to have a supportive team, not just a prescription.
Q. What happens if family members oppose the decision?
Family members are often reeling as their loved ones approach death, wrestling with big, strong feelings, Moore said. “Given space to be heard and explore their frustrations and objections, I find family members get to a point where they accept the decision. They may not always agree, and that’s fine.” It’s the exceedingly rare patient who’ll choose MAID and not inform the family, but it has happened.
Q. How should I prepare to ensure this option is available if I need it?
Don’t be squeamish. In addition to talking with your doctor and health insurer and loved ones now, make sure you have an advance care directive prepared. Do you want continuing medical treatment despite ailments or injuries? Feeding tube if in a vegetative state? Under what circumstances do you want medical intervention to stop? Do you want to be buried or cremated? Have it all written down, and choose who you’ll empower to carry out your wishes if you’re incapacitated. Weigh quantity of life with quality of life. Shockley quoted Barbara Coombs Lee’s book, “Finish Strong: Putting Your Priorities First at Life’s End:” “Talking about death won’t kill you.”
Q. How might we make the law better?
A. While none of this is on the table — or in Blakespear’s bill — some hope to see the law expanded in “specific and compassionate ways,” eventually. Janet Hager, founding director of A Better Exit, said there are deadly, devastating, debilitating diseases that take far more than six months to kill — think progressive neurodegenerative diseases — and by the time the end arrives some patients have lost the ability to self-administer, or to swallow, or to give informed consent, to MAID, as the law requires. An IV option would help. Allowing patients to choose MAID while they still have physical and mental capacity would help, too.
Q. Is there a comprehensive list of medical providers who support MAID?
A. No. Finding help can be a bear. Here are some resources:
Moore’s practice is at www.autonomyhealth.org and (619) 786-8222. He specializes in guiding patients, families and health systems through the process. Greenberg’s End of Life Choices is at www.endoflifechoicesca.org and (760) 636-8009. It provides Californians information and support to navigate their legal options. It also has a resource directory and can support patients during MAID if they choose not to have a medical professional present. Compassion & Choices, where Shockley is a board member, is a national organization at https://compassionandchoices.org/ and (800) 247-7421. It offers end-of-life decision guides, consultations and resources. Janet Hager’s A Better Exit is at https://abetterexit.org/ and dedicated to broadening California’s End of Life Option Act to include individuals suffering from progressive, incurable diseases that are not currently covered under the law. There’s also socalendoflifeoptions.com at www.socalendoflifeoptions.com/ and (909) 709-0676, and the Academy of Aid In Dying Medicine at www.aadm.org.
“I came to this over a long ministry,” Shockley said. “We’re talking about people who we know will not live. When that moment comes, it is an act of love to support that person in the final moments of their lives.”
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