Doctors told Chasity Phillips in 2002 that she had a 50 percent chance of surviving surgery.
She suffered 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 follow-ups.
But 13 years later, Phillips is thriving with not one, but two terminal illnesses. It has made her somewhat philosophical about her own mortality.
“There’s a certain freedom that comes with dying,” she said. “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.”
Phillips’ 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 at age 29, less than a year later – on November 1, 2014 – 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 such law in the country, by obtaining life-ending medicine. Maynard was also one of 859 people who chose to use it.
There’s a certain freedom that comes with dying...You can eat ice cream for breakfast.
Chasity Phillips, terminally diagnosed with cancer
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 will lead to more extreme types of end-of-life care, including euthanasia.
Disability advocates, however, have questioned whether physician-assisted suicide is an issue that can, and should, be legislated at all.
“All of us are pretty vulnerable,” said Phillips, who additionally suffers from lupus and qualifies as a disabled person.
According to the Americans with Disability Act, a disabled person is anyone who has a physical or mental impairment that substantially limits one or more major life activities.
“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 disabled populations.
Five states allow physician-assisted suicide: Oregon, Washington and Vermont have legislation in place, while Montana and New Mexico established legality through the state Supreme Court. Twenty-six states and Washington, D.C., are considering or have considered legislation this year, and Kansas and Missouri are among the 12 states considering death with dignity legislation for the first time.
Coleman established Not Dead Yet in 1996 to combat the views of Dr. Jack Kevorkian, known in the media as “Dr. Death” for his active support for a terminal patient’s right to die.
Not Dead Yet partners with groups such as the Disability Rights, Education and Defense Fund (DREDF) and the Massachusetts activist group Second Thoughts to create a nationwide network that opposes the death with dignity movement as discriminatory and dangerous.
Earlier this year, they lobbied against a death with dignity bill under consideration in the Colorado state legislature. The bill was rejected.
The laws 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.
There have not been any reports of coercion, of vulnerable people being pressed into using the (physician-assisted suicide) laws.
Peg Sandeen, executive director of the Death with Dignity National Center
While the Oregon Public Health Division’s 2014 review of the DWDA 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 DREDF, 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 disabled person simply because the person is 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.
Golden, who uses a wheelchair, spoke from experience about the doubts 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.”
Phillips said the laws discourage people from finding comfort in their condition.
“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.”