NEW YORK — Sara Myers can’t speak for long because she runs out of breath; she is scared to eat because she could choke. After five years with Amyotrophic lateral sclerosis (ALS), she is ready to die.
Seated in a wheelchair in her spacious apartment in midtown Manhattan, she says with composure, “I don’t want to stay alive any longer than necessary with this disease.”
“My body is a torture chamber.”
Myers, 60, has lost all motor skills and is dependent on round-the-clock care because of ALS, also sometimes called Lou Gehrig’s disease, which kills certain nerve cells in the brain and spinal cord.
Myers, along with two other terminally ill patients, filed a case against New York State in February, asking a judge to issue an order protecting their doctors from criminal prosecution if they help them die.
Aid in dying — currently legal in Oregon, Washington, Vermont, New Hampshire and California — allows a mentally competent, terminally ill adult to legally request a prescription for a life-ending medication from their physician. The medication must be self-administered.
Myer said her doctors expect her to live for another year; she knows that the chances of the lawsuit being settled in that time are slim.
A Manhattan judge ruled against their wishes in October.
“In New York, as in most states, it is a crime to aid another to commit or attempt suicide,” said state civil judge Joan Kenney in her ruling. “But patients may refuse lifesaving medical treatment.”
Still, she is determined to fight for what she believes to be a civil right for the terminally ill.
New York lawmakers like Sen. Diane Savino are hoping to capitalize on the momentum brought to the physician-assisted suicide after the high-profile case of 29-year-old Brittany Maynard, a terminal brain cancer patient who moved from California to Oregon to end her life in November, 2014 under Oregon’s Death with Dignity Act.
California legalized aid-in dying after Maynard’s case while New York has introduced the bill in state legislature.
In February, shortly after Myers filed her case, Savino, along with co-sponsor Sen. Brad Hoylman introduced the New York End of Life Options Act in the state legislature and is currently working on building support for the bill, which she estimates might take another two years to pass.
“This option will allow terminally ill patients to have some control over their life,” said Savino. “It is a decision they should be allowed to make.”
The fight will prove to be a tough one.
Immediately after the bill was announced Timothy Cardinal Dolan said the Church was launching an aggressive fight against efforts in New York to legalize the practice. The opposition was not just limited to religious groups but also faced criticism from disability rights advocates that have since increased their focus on mobilizing support against the passage of the bill and educating the public about its potential risks.
Kathleen Gallagher, director of Pro-Life Activities at the New York State Catholic Conference, which strongly opposes the bill and announced a special advocacy campaign in February to fight against the measure, believes that legalizing physician-assisted suicide could open the door to discrimination against disadvantaged groups, such as the poor, elderly and disabled.
“There is going to be pressure to relieve those members of the society who are generally conceived as a burden,” she said.
She added that with drugs prices and cost of medical care only increasing, aid in dying risks becoming the cheaper and more attractive option. “Expensive drug vs. cheap dying — that’s not really a choice,” she said.
Way out of ‘horrendous pain’
Just the idea of having a choice, however, helped 68-year-old Youssef Cohen, a professor of political science at New York University who was diagnosed with mesothelioma cancer in 2012, get through the dark days.
“Everyone wants to live. No one wants to die. But knowing that there is a way out of the horrendous pain eases the uncertainty and fear to some extent,” he said emphasizing that examples like that of Oregon where aid in dying has been legal since 1997 show that one in three patients who obtain lethal medications don’t end up using the drugs.
Through 2013, the state has filled 1,173 aid-in-dying prescriptions but only 752 of those have been used.
Diane Coleman, founder and president of Not Dead Yet, a disability rights group in Rochester, New York, that opposes legalization of assisted suicide as “deadly forms of discrimination” against old, ill and disabled people fears that legalizing the option might open a Pandora’s box.
“Once access to life-ending drugs is facilitated, there are no safety checks or oversights — for example, no independent witness required — built into the law that prevents a third-party from administering the drug and ending someone’s life without their consent,” she said.
So far, that has not been the case in any of the states where aid-in-dying is legal.
Corinne Carey, New York State Campaign Director for Compassion & Choices, a non-profit organization working to improve patient rights and choice at the end of life including access to aid in dying, argues that study of 17 years of data from Oregon — the first state to legalize assisted suicide and the version on which aid in dying bills around the country are modeled — shows that there has not been a single case of abuse of the law.
“The safeguards in place have ensured the law's proper application, helping terminally ill adults who choose aid in dying to ease their suffering when death is imminent,” she said.
According to the laws, only terminally ill, mentally capable adults qualify for the medication. A person living with a disability cannot use the law because of the disability alone, and no one can use the law if they are simply dissatisfied with the quality of their life.
Other options besides death
Gallagher and Coleman advocate improving palliative care, a philosophy of care that focuses on alleviating the pain of chronically, terminally or seriously ill patients, and attending to their emotional and spiritual needs.
It includes access to medication, 24-hour/seven-day-a-week access to care, and support for loved ones following a death.
Coleman said that in her experience she feels people are now more aware and educated about palliative care compared to 15 years ago, but there is still room for improvement.
“There is still a large section of the population that either doesn’t know about this [option] or are concerned about the cost,” she said.
Carey argues that while Compassion & Choices, for example works to ensure the highest quality end-of-life care possible, in some cases it is just not enough.
“Data (from Oregon) shows that access to aid in dying actually facilitates better end-of-life conversations between patient and doctor, and increases access to hospice and palliative care,” she said. “But even the best palliative care might not work for everyone, and so terminally-ill individuals deserve more options to avoid unnecessary suffering at the end of life.”
Good health care and support enabled James JJ Hanson in his battle against brain cancer. Diagnosed with Grade 4 terminal brain tumor in 2014 and given four months to live, Hanson managed to overcome the disease and is going strong 18 months later. He said he understands that end-of-life can be a very emotional time and that hopelessness can hinder one’s desire to fight the disease.
He said he also realizes that a doctor’s prognosis is not always set in stone.
“However, if you decide to utilize the aid in dying option, you can’t undo that choice,” he said.
Having survived the most difficult part of his illness, Hanson now heads Patient Rights Action Fund in New York State, an organization that pledges to to protect the rights of patients and people with disabilities by opposing physician assisted legalization efforts.
He is also involved with the Brain Cancer Foundation’s research to find a cure for the disease and fears that if people with chronic diseases choose to end their lives, it would impact the support and funding for research to find cures to life-threatening conditions.
For advocates of the aid in dying option, however, the peace of mind associated with a compassionate and non-violent death is far greater than any of its risks.
“As I see it, this issue is just like abortion. Since when should we be able to control what someone else does with his or her body? Its only a matter of time before people realize that,” said Myers.