The Assembly Health Committee is holding two public hearings this session on a controversial bill that would allow terminally ill patients to voluntarily request medication to die.
The first hearing was held in Albany on April 23 and a second is scheduled for May 3 in Manhattan.
In Albany, the committee heard a variety of testimony under oath on the Medical Aid in Dying Act from patients, family members, health care providers, legal experts and medical ethicists.
The legislation (A. 2383-a/S.3151-a) sponsored by Assemblywoman Amy Paulin, D-Scarsdale, and Sen. Diane Savino, D-Shore Acres, is opposed by groups such as the Center for Disability Rights which says the bill is flawed because it puts disabled people at a greater risk of coercion and abuse.
“Assembly bill 2383 and bills like it are dangerous for many reasons and should not be permitted to precede. Proponents of 2383 frame their argument around increasing individual choice, but the disability community in concerned with losing our choice to live,” said Kathryn Carroll, policy analyst at the Center for Disability Rights. “This bill allows for mistake, coercion and abuse.”
According to Carroll, most people who are diagnosed with a terminal illness will face some sort of disability in the course of their illness, and if facing such a disability is reason enough to end one’s life, then that is a devaluation of disabled people lives.
“You cannot argue that there is not an economic incentive — on the part of insurance companies or families and caregivers — to contemplate or even encourage someone committing assisted suicide,” Carroll said. “As long these external influences exist, the promise of a choice to end one’s life is a lie.”
The hearing room was full of hundreds of people, supporters for the Medical Aid in Dying Act in yellow shirts with pockets of the opposition dresses in purple scattered among the rows of seats. The New York Alliance Against Assisted Suicide wore stickers that read, “No Assisted Suicide.”
Dr. Sally White, the medical director of St. Lawrence Addiction Treatment Center and a member of The American Medical Association and the Medical Society of the State of New York, said the bill is dangerous and misguided.
White said the bill’s safeguards are unenforceable and lack oversight on patient abuse. She also said the capacity of terminal patients to make end of life choices cannot be guaranteed because physicians are untrained to assess patients in that way.
“So not only is enforcement of the protective measures of this bill impossible, most people who would use it probably lack the capacity necessary to make an informed decision about taking lethal medication,” said White. “This is a very flawed bill.”
Kristen Hanson, a community relations advocate for the Patients’ Rights Action Fund, shared the story of her husband James Joseph “JJ” Hanson, who died in December. Diagnosed with glioblastoma multiforme and originally given four months to live by his doctors, Hanson lived for more than three years and became an outspoken opponent to medical aid in dying legislation in New York and other states.
Kristen Hanson promised her husband she would fight to protect terminal patients like him from the legalization of assisted suicide. He was the, “Man of Steel,” living beyond his prognosis and used as an example of one of the many problems with assisted suicide.
“If JJ were here today, he would tell you that assisted suicide is bad public policy. He’d say: ‘You cannot focus on the individual patient when you look at this legislation. You have to consider the many vulnerable people who will lose all hope and be put at risk when suicide becomes a medical treatment,’” said Hanson. “Legalizing assisted suicide will result in less choice for patients through external pressures, coercion, mistakes and abuse.”
Hanson said if assisted suicide was legal, JJ might have taken that option with the doctor’s original prognosis. She questioned how life and death decisions can be based on prognosis that could be wrong, and that patients and families shouldn’t give up hope.
Although outnumbered in the hearing room full of right-to-die advocates, the opposition made their presence known as they applauded alongside some Assembly members after their side shared testimony.
Those in support of assisted suicide see the the legislation as an additional choice, simply offering a wider range of medical options for those suffering with terminal illness. Patients and other bill supporters argue that this legislation would provide seriously ill New Yorkers the right to end their suffering.
Jay Federman, medical director for the tri-lakes division of High Peaks Hospice & Palliative Care and a family physician, said hospice care and palliative care have advanced to help provide comfort for those in their final days. However, it is not always sufficient to meet the needs of the patient or family.
“For a variety of reasons, some individuals seek more personal control of their dying process and assurance they will not suffer at the end,” Federman said. “This is why the Medical Aid in Dying Act should be supported and enacted into law in New York state.
Federman shared how some colleagues have made the case that it already happens and how he’s heard families say that loved ones received medical aid in dying because of connections and a relationship with their physician. He said that this practice should be legal to everyone, not only those who have the means to do so.
Another ardent supporter of the aid-in-dying bill, Susan Rahn, was diagnosed with stage-four metastatic breast cancer that spread to her ribs and spine in 2013. She was told that she was terminally ill. Rahn said she wants to continue to live, see her son, Adam, graduate medical school and wishes to hold grandchildren.
“But eventually my treatment options will run out and what I don’t want is to suffer and be in uncontrollable pain while my body shuts down for what could be weeks,” Rahn said.
Rahn stressed she has received palliative care and will continue to fight. However, she doesn’t want to suffer if the cancer takes over her lungs, liver or brain.
“My terminal illness has taken away so much from me already and ultimately is going to take my life, but I want to choose how I will die when my time comes,” Rahn said.