By Jennifer Mauro | Associate Editor
Two years ago, as terminally ill 29-year-old Brittany Maynard made national news by publicly advocating for her right to end her life under Oregon’s Death with Dignity law, Sarah Steele sat in her Camden County home, quietly anguishing over her right to live.
“I felt like it really minimized what I had fought for and conquered in my own life,” said Steele, 44, who 10 years ago was told she only had months to live.
That’s one reason why Steele, a two-time cancer survivor, wife and mother of three, is now working with a broad-based coalition including the New Jersey Catholic Conference, diocesan leaders throughout the state, and several right-to-life and disabilities advocacy groups against legislation in Trenton that would legalize assisted suicide. Known as the “Aid in Dying for the Terminally Ill Act,” Bill A2451/S2474 would permit terminally ill patients to “self-administer medications to end life in a humane and dignified manner.”
“I want people to hear how important this issue really is,” Steele said.
Steele was 23 when she was first diagnosed with cancer – stage 3 lymphoma – and told she would never have children. But after years of treatments, she was considered in remission. She was also the mother of two little girls and a boy.
But it was only four months after her third daughter was born that she began to notice a change in her demeanor. She was depressed and often felt in “a fog.”
“I would sit on the couch and watch TV,” she said, “like a bug to a light. I couldn’t tell you what I was watching – I would just stare at it.”
Her energy level dropped, and she was diagnosed with post-partum depression. Then the headaches began. “There would be this ‘pound, pound, pound.’ I was an active mom, an active wife, and I was supplementing my husband’s income by catering. So I tried to hide what I was feeling.”
Eventually, the pressure in Steele’s brain became so intense, she ended up in the emergency room, an experience she talks about with disdain.
“They thought I was medicine-seeking because I just presented with a headache,” she said, adding that she was in the emergency room for hours before she could convince a doctor to perform tests. “I remember pleading with the doctor, ‘I want someone to look at my brain.’”
What was discovered, Steele remembers, sent her doctor back into her hospital room, his face drained of color – a brain tumor. “It was surreal,” she said. “It’s like when you hear that someone you know is going to pass away. You know, but you’re still not prepared for it. I was in shock.”
The Voorhees resident was rushed to Thomas Jefferson University Hospital, Philadelphia, and as she and her family awaited the results of a biopsy, she remembers feeling relieved, not from the news, but to finally have a concrete diagnosis.
“We were celebrating that I had an answer … we were almost giddy,” she said.
A euphoria that was short-lived as the diagnosis returned – anaplastic astrocytoma, a rare, aggressive stage 3 brain cancer. She underwent two surgeries soon after, but was told she would not see Christmas, which was only four months away.
Those months of chemotherapy and medications turned into years of treatment – years that as she fought for life, she saw her children grow into teenagers. Now, 10 years later, she is stable, but the tumor is still present in her brain, and she is considered terminal. But she’s alive.
“I have to take naps; sometimes I can’t remember names,” Steele said. “I basically have a brain injury, and there’s a stigma that goes along with that.”
Through it all, she said she never considered suicide. “I never wanted to end my life. I wanted to fight. What made me feel empowered was to embrace what was in front of me and to be here as long as I could for the people who love me.”
Steele admits to being frustrated at the overwhelming media attention that surrounded the Maynard case. She said that at the time, she, too, attempted to reach out to media outlets and advocate for the right to live. She got nowhere. Meanwhile Maynard, who was also diagnosed with terminal brain cancer, ended her life in November 2014 with the aid of medication.
“What my concern about assisted suicide is, it’s a slippery slope,” she said. “My decision to live doesn’t have an effect on others, unlike Brittany’s decision to die,” she said, expressing concerns over health insurance.
For example, Steele cited the case of a 64-year-old woman in Oregon, who, in 2008, was denied medical insurance coverage to treat her lung cancer. The insurance company, however, did agree to pay for a physician-assisted death.
“The sanctity of life is deteriorating, and Brittany Maynard’s death and Oregon’s decision to support it affect my right to fight my illness,” Steele said. “Nobody should be telling you that you don’t have rights to medication.”
That concern is one echoed by the organizations working with Steele to oppose the legislation.
“In an era of cost control and managed care, patients with lingering illnesses may be branded an economic liability, and decisions to encourage death could be driven by cost,” said Patrick Brannigan, executive director for the New Jersey Catholic Conference. “Lethal prescriptions cost less than chemotherapy.”
A Universal Issue
Oregon is one of five states with assisted-suicide laws, the others being California, Montana, Washington and Vermont.
Supporters of the bill, the current version of which is in the state Senate Health, Human Services and Senior Citizens Committee (it has failed to pass since first being introduced in 2012), argue assisted suicide gives the terminally ill a “death with dignity.”
Brannigan acknowledges the bill may have been introduced out of compassion, but calls the effort misguided. “The finest expression of compassion is loving care that reduces or eliminates physical pain, psychological distress, depression and hopelessness – not providing someone with lethal drugs to end their life,” he said.
Speaking in 2013 during a forum on a previous version of the bill, he said, “Each one of us probably has walked with or sat with a family member or friend during their last days. Those of us who have held a hand, wet a lip with an ice cube or helped feed a loved one – we know that death is always personal for the dying and for the family and friends who remain.”
Speaking out on the issue in a 2014 message, Bishop David M. O’Connell, C.M., cited the Catechism of the Catholic Church to remind the faithful that “we are stewards, not owners, of the life God has entrusted to us.”
“Human life is about joys and sorrows, good times and bad, health and sickness, love and loneliness, abundance and sacrifice, time and eternity and every human experience in between: yesterday, today and forever,” Bishop O'Connell wrote. “Everyone who lives will eventually die. That’s the way God made us and there are no exceptions and no escape.”
While acknowledging the strong religious tenets on which the Church bases its opposition to assisted suicide, Brannigan stresses that the cause against the legislation goes well beyond religious beliefs.
“Without question, the Catholic bishops of New Jersey and leaders of other faith-based groups, spurred by their religious belief in the sanctity of human life, have voiced strong objection,” he said. “But many groups, including those who don’t embrace any particular faith’s doctrine, have been just as active – or more – in opposing the unforeseen consequences of assisted suicide.”
Among the more than four dozen groups opposing the legislation are the American Medical Association, Autistic Self-Advocacy Network, the National Council on Independent Living, the National Council on Disability, NJ Family Policy Council and New Jersey Right to Life.
Marie Tasy, executive director of New Jersey Right to Life, says having Steele as an advocate gives the current legislation a voice.
“It’s important to have an individual who has experience with the diagnosis of a terminal illness,” she said. “It shows that many times, the diagnosis is wrong and that people can live past expectations as long as they get the proper treatment.”
For Steele, the struggle to protect her right to live is still just as dire as it was 10 years ago when she was first diagnosed. “I was told I wouldn’t see Christmas. But it’s not over. Do you know how many Christmases I’ve seen?” she said.
Steele, who continues to be treated by Dr. Jon Glass, Thomas Jefferson University Hospital, admits there will likely be a time in the future when her tumor will again need treatment.
“There’s a danger for me personally that if this legislation is passed in New Jersey, I won’t be covered under insurance,” she said. “Let me tell you, 44 is still young, and I don’t think insurance companies should decide if I have a quality of life.”