Doctors told Chasity Phillips in 2002 that she had a 50 percent chance of surviving surgery.
She suffers from chondrosarcoma, a malignant bone cancer. It had begun to affect her heart, ribs and spinal cord. Her choices were certain death, her doctors said, or surgery to remove part of the tumor.
She chose the surgery. Still, the return of her cancer was likely. Doctors told her she would have six months to a year before it grew back, requiring more risky followups.
But 13 years later, Phillips is 38 years old and thriving, despite two very severe medical conditions. She also suffers from lupus. The state of her health has made her somewhat philosophical about her own mortality.
“There’s a certain freedom that comes with dying,” said Phillips, who lives near New Orleans. “You really don’t have to deal with your annoying cousin. You really don’t have to go on that family trip. You can eat ice cream for breakfast.”
Her prognosis was not unlike Brittany Maynard’s. But Maynard chose physician-assisted suicide after doctors diagnosed her with terminal brain cancer on Jan. 1, 2014. Before she died less than a year later – on Nov. 1, 2014 – at age 29, Maynard had become a prominent advocate for the “death with dignity” movement, which has triggered legislation in 25 states.
She was one of 1,327 people who took advantage of Oregon’s 1997 Death with Dignity Act, the oldest and foremost such law in the country, by obtaining the life-ending medicine. Maynard was one of the 859 people who actually chose to use it.
But as citizens from California to Kentucky push for dying rights, advocacy groups for people with disabilities question whether physician-assisted suicide should be legal.
“The risk of mistake and coercion and abuse are really too great,” said Diane Coleman, founder and CEO of Not Dead Yet, an advocacy group that informs and lobbies on behalf of the disabled.
Besides Oregon, whose death with dignity law is a model for similar efforts elsewhere, four other states allow physician-assisted suicide: Washington and Vermont have legislation in place, while Montana and New Mexico established legality through the courts.
Twenty-six states and the District of Columbia are considering or have considered legislation this year, and Kansas and Missouri are among the 12 states weighing death with dignity legislation for the first time.
Earlier this year, Colorado lawmakers rejected a death with dignity bill. In California, meanwhile, the state medical association recently dropped its longstanding opposition to physician-assisted suicide in the case of terminally ill patients. The state Senate last month approved the End of Life Option Act, but it has run into religious opposition in the state Assembly.
“This legislation has evoked strong feelings from both those who support and oppose it,” said California state Sen. Anthony Cannella.
Phillips said the laws discourage people from finding comfort in their condition. Though studies of some patients show that physicians generally offer more optimistic predictions about how long a terminal patient will live, she’s still alive long past expectations.
“I’m able to surround myself with people like me,” said Phillips, who worries that many terminal patients do not know about support groups and advanced palliative care. “These aren’t things that people are told exist. Doctors often don’t know. They value my life as it is.”
Peg Sandeen, executive director of the Death with Dignity National Center, said that those in favor of death with dignity laws support the merits of palliative care. The center has not found evidence of a “slippery slope” argument, which claims that legalizing physician- assisted suicide would lead to more extreme types of end-of-life care, including euthanasia.
“We want people to be getting good quality end-of-life care at all times,” Sandeen said.
She said that the slippery slope “hasn’t happened. There have not been any reports of coercion, of vulnerable people being pressed into using the laws.”
Coleman established Not Dead Yet in 1996 to counter the efforts of Dr. Jack Kevorkian, dubbed “Dr. Death” for his active support of a terminally ill patient’s right to die.
Not Dead Yet partners with groups like the Disability Rights, Education and Defense Fund and the Massachusetts activist group Second Thoughts to create a nationwide network that opposes the death with dignity movement and the laws it champions as discriminatory and dangerous.
The laws generally stipulate that only a capable adult with a terminal illness, meaning one that will lead to death within six months of diagnosis, may receive a life-ending prescription. The patient must make both a written and oral request in the presence of two witnesses. Another oral request must follow at least 15 days later.
But where the safeguards stop, the danger begins, according to the disability groups. None of the laws or rulings include provisions about when, where or how patients should ingest the life-ending medicine once prescribed.
While the Oregon Public Health Division’s 2014 review of the the state law showed 89.5 percent of patients took the medicine at home, only 19 percent of patients took it under a physician’s supervision.
According to Oregon’s review of the law, the foremost reasons for physician-assisted suicide are loss of autonomy, decreasing ability to participate in activities that made life enjoyable, and loss of dignity. Most advocacy groups cite unendurable pain as the main motivation for pursuing legislation.
To Not Dead Yet and the Disability Rights, Education and Defense Fund, this amounts to fear of disability rather than fear of painful death or lessened quality of life.
The laws have a provision that bars physicians from prescribing a life-ending prescription to a person with disabilities simply because they are disabled. But opponents stipulate that the danger does not come from those with disabilities who might feel pressure to end their lives, but those without disabilities who fear becoming disabled or having a poorer quality of life.
Marilyn Golden, a senior policy analyst at the Disability Rights, Education and Defense Fund, who uses a wheelchair as a result of injury, spoke from personal experience about the doubts about her quality of life that she initially encountered.
“At the beginning, I felt that the injury was unbearable,” she said. “A year later, it hit me: There was no change in my quality of life.”
Emma Baccellieri of the Washington Bureau contributed.