California legislators and the Compassion and Choices coalition are pushing for a bill allowing terminally ill patients to shorten the inevitable dying process
BY KAREN OCAMB
In 1996, on the cusp of the lifesaving three-drug HIV cocktail, Eric Roberts starred inIt’s My Party by director Randal Kleiser, one of the first films to feature a gay man who not only insists on dying with dignity but doing so with a festive, emotional flare.
Roberts’ character had been diagnosed with an aggressive disease that would rob him of his mental acuity months before he would actually die, so he wants a goodbye party while he can still recognize the ones he loves. The film was Kleiser’s tribute to his own ex-lover, who died of AIDS in 1992.
In the film Roberts had a brain disease, so he still looked young, fit and beautiful. Most gays with AIDS surrendered vanity early on as their once-worshipped bodies were ravaged by the wasting syndrome or the purple lesions of Kaposi’s Sarcoma. They were rendered helpless and unrecognizable to themselves, an agony sometimes worse than the unrelenting physical pain. Death was a welcome blessing, and many were quietly helped to that end by bereft loving friends, lovers and family, despite the pall of illegality.
It was in this context that efforts to legalize physician-assisted suicide in California were launched in 1992, 1995 and 1999. But the prospect of a dying person choosing a good death became highly politicized by the religious right with the Florida case of Terri Schiavo, where Gov. Jeb Bush sided with the family and ordered her life prolonged, despite the wishes of her husband who said his wife expressly said she wouldn’t want to be kept alive in a vegetative state.
Today there is another effort underway in the California Legislature to pass a well-crafted bill—modeled on the successful death-with-dignity bill in Oregon—that even won the support of conservative Democrat U.S. Sen. Dianne Feinstein and the California Medical Association, which ended its opposition after 28 years. On June 4, the State Senate passed the End of Life Option Act, SB 128, by 23 to 14, buoyed by a poll last year showing that nearly two-thirds of Californians favor giving a terminally ill patient the option to die peacefully. Currently Washington, Montana, Vermont and New Mexico also have medical-aid-in-dying laws.
Co-authors Senate Majority Leader Bill Monning and Senate Majority Whip Lois Wolk, with support from the Compassion & Choices Coalition, introduced SB 128 last January. The bill has a “checklist” of safeguards to prohibit the possibility of abuse. Essentially the bill would allow a mentally competent, terminally ill adult (18 or over) the option of requesting (both orally and in writing) a doctor’s prescription for medication to shorten the inevitable dying process so they might die peacefully, without pain.
“I’m doing everything I can to extend my life. No one should have the right to extend my death,” out State Sen. Mark Leno recalls one woman dying of lung cancer saying during a Senate hearing on the bill. Leno is a principal co-author of SB 128.
“I happen to be of the philosophical belief that government should not come between an individual and a decision he or she may make with a physician,” Leno says during a phone interview with Frontiers. “There is nothing more personal and of greater importance than our end-of-life choices. I don’t think government should be in the way. That’s what this bill does. It provides a choice for someone in a very specific situation.”
Leno knows something about this. He lost his partner Doug in 1990 and Doug’s younger brother in 1986. “Those of us of a certain age,” Leno says, “saw the tortured deaths of hundreds of friends” at a time when there was no hope of surviving. “So I’ve seen firsthand how cruel that can be.” And with aging parents and siblings approaching their last years, “it becomes a very real issue all over again.”
Leno says he found it “astounding” that a Republican colleague described his opposition to the bill by suggesting a terminally ill patient could drive over a cliff or shoot themselves in the temple instead. “The level of insensitivity is so extreme,” he says.
Michael Saum, a 35-year-old transgender man who is dying from brain cancer (pictured in photo above with best friend Julia), wishes he had that option. Saum’s doctors think he will die in the next few months, before the bill reaches Gov. Jerry Brown’s desk.
“It’s not that I want to die; I don’t want to die,” Michael tells Frontiers. “I love life, but I don’t want to live like this.”
Saum was battling cancer for 14 years before going into remission—an 18-month respite during which he took the opportunity to become the man he always felt himself to be. His mother, who had been fine when then-Heidi came out as a lesbian, could not handle his transition. When he was diagnosed with Stage IV brain cancer that had spread throughout his body, he turned to his lesbian friends, most importantly his best friend Julia, whom he had once dated, to provide him refuge in her El Monte home and to take care of him. “It’s the kind of love I can’t even describe. She’s selfless,” he says.
Saum is currently at the strongest dose of painkiller allowed, but it’s not working. He has severe headaches, nausea, unregulated body temperature, short-term memory loss, unfiltered speech—“so many things go wrong” having big tumors in both the left and right frontal lobes.
“I’m in terrible pain every day, to the point that I’m crying nearly every day,” he says. “I’ve been told by my doctor that there is no chance for change, no miracle; no treatment is going to heal me.
“I think I’m going to pass before this bill is enacted,” Saum says, “but if it’s not there for me, I’m grateful I’m able to help others in my situation.”
Out Assemblymember Susan Eggman, Chair of the LGBT Legislative Caucus, is the lead principal co-author in the Assembly. A former hospice social worker who also lost friends in the ‘80s and ‘90s and cared for family members as they lay dying, she is uniquely positioned to understand the significance of SB 128.
“I come at this from a lot of different perspectives,” Eggman tells Frontiers. I believe—and I think polling shows—that Californians are ready for this.” Additionally, 17 years of research out of Oregon show that there is virtually no coercion or abuse.
“We know that oftentimes people don’t even go through with it. They just know that they have that option,” Eggman says. The bill is not for people who are depressed or seniors or disabled. “This is for somebody with a terminal illness, for which no cure is expected, and their end-of-life trajectory is within six months to a year.”
And, she notes, the End of Life Option Act is “for those who have had a certain degree of control in their life—this is something that is important to them.”
Perhaps more people than the dying and their loves ones are beginning to grasp the moral and ethical urgency of this bill. In a sharp contrast to the political and religious-based Schiavo controversy, a bipartisan poll conducted June 16-21 shows that nearly seven out of 10 Californians (69%) support SB 128, and that includes Catholics (60%), non-evangelical Protestants (65%) and evangelical Christians (57%).
Eggman is holding a hearing on the bill on July 7. The deadline to pass SB 128 in the Assembly is September 11.
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