By Jennifer Mauro | Associate Editor
Packed in a small meeting room in the State House Annex, dozens shook their heads in disbelief, their faces twisted in disgust as Dr. Matthew Suh turned off video testimony of a terminally ill woman who was denied access to health care – unless it was the medication she would need to take her own life.
“Let’s be honest,” he said. “What we’re talking about is state-sanctioned suicide.”
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Dr. Suh, a surgeon and oncologist with practices in Denville and Newton, was one of nearly 50 physicians, caregivers, right-to-life and religious advocacy groups, terminally ill patients and those with disabilities who gathered Oct. 20 in Trenton to oppose bill A2451, known as the “Aid in Dying for the Terminally Ill Act.” The bill calls for allowing terminally ill patients to self-administer medications in order to end their lives.
An hour before Dr. Suh and others held a news conference against the legislation, those opposed lined the halls of the State House Annex as legislators trickled in for an afternoon meeting of the General Assembly and vote on the bill. The bill later passed the Assembly by a vote of 41-28, with five abstentions. It now goes to the Senate.
“I want them to see the face of a terminal diagnosis,” said Sarah Steele of Voorhees, who was diagnosed with an inoperable brain tumor 10 years ago and told she wouldn’t live the four months to see her next Christmas. “I want to make sure they can put a face to a survivor.”
Carrying anti-legislation literature and her own testimony in hand – and accompanied by her daughter Sophie, 17, Steele approached bill sponsor Assemblyman John J. Burzichelli as he proceeded down the corridor.
“He was very kind and asked me what I was feeling when I was told I wouldn’t see Christmas,” she said after the encounter. “I told him I never gave up.”
Giving up is something those opposed to the legislation fear most – not the will of those facing illness or disability, but the motivation of the health care industry on which they rely.
During the news conference, Dr. Suh cited cases in which those in states with assisted-suicide laws were denied access to health care unless it was for life-ending measures.
“The public isn’t hearing about people who are having their care denied,” Suh said, adding that in California – the latest of the states to legalize assisted suicide and from where the video testimony of the woman denied care stemmed – mistakes are being made.
“This bill will impact lives for lack of active treatment,” Dr. Suh said.
In addition, there’s also the possibility of an error in diagnosis. “Proponents of the bill argue that doctors don’t make mistakes,” Dr. Suh said. “Doctors can make mistakes. Just ask the malpractice lawyers.”
Jim Henry, founder of the Life Givers Network, which helps the terminally ill fulfill an abundant life, agreed, saying many people have what he calls a “white coat syndrome,” in which patients believe anything told them by a doctor and never seek a second opinion.
“If they embrace that, it’s over,” he said.
“People seek medical help not to die, but to live,” he added. “With this bill, people are looking for a legal permission to die.”
Dr. Suh especially emphasized the bill’s health care threat to those on Medicaid, which is already, in his opinion, inadequate. “We introduce a bill like this, and those people won’t be protected.”
When it comes to protecting life, Patrick Brannigan, executive director for the New Jersey Catholic Conference, emphasized the role of the Church.
“It’s wonderful to hear the life stories of so many people confronted with a terminal diagnosis who, because of the help and support they received from family, doctors and the Church, were able to fight and overcome the depression, anger and hopelessness that sometimes confronts people when they are told they only have a few weeks or months to live,” he said.
Brannigan has testified before the state Legislature in the past in opposing the bill.
Explaining his position on the bill, Sen. Steven Oroho, R-Sussex, said, “I do know that there’s a God. We’re not him, and we shouldn’t try to play him. I believe in miracles, and I believe they happen.”
Personally, Dennis Castellano didn’t use the word “miracle,” opting instead to consider himself a ghost under the bill’s definition of terminally ill – an incurable and irreversible disease that will result in a patient’s death within six months.
Castellano was diagnosed four years ago this October with stage 4 astrocytomya glioma – a tumor that presents in the brain and spinal cord. His original diagnosis: only weeks to live.
“We’re given the gift of life, and then we forget about it until something bad happens,” he said, adding that he’s living an abundant life since undergoing treatments that put him in a remission-like state.
Like Brannigan, Castellano has also made it a priority to make himself known around the State House whenever assisted-legislation is reintroduced. The first year after diagnosis, he said, he approached lawmakers saying, “‘I’ve been alive for one year.’ I’ve been doing this four years now.”
The Problem of Pain
Many in attendance disagreed with those who say that the bill is needed to ease pain and suffering. Dr. Suh, for example, said proponents of the bill he’s spoken to admit pain isn’t the underlying issue when it comes to the legislation but rather the idea of dying in comfort.
“[The bill is] trying to address fear, and no amount of legislation is going to take away that fear,” he said.
Castellano takes issue with the problem of pain because he knows pain – he went through organ shutdown in the weeks after his diagnosis.
“I’m talking about pain from the tips of my fingers to the center of my chest,” he said. “You know that tingling you get from bumping your funny bone?’ Imagine that all over your body.”
“But when your body is in the throes of pain, your mind necessarily isn’t. There are different mechanisms your body has to protect itself,” he continued, emphasizing that today, he no longer remembers the intensity of discomfort he went through.
This will to live is something he and other opponents of assisted suicide believe bill A2451 robs patients of.
“People fight for life every day. Why are people trying to fight for death?” he asked. “I have a 13-year-old daughter – what about her? That’s my responsibility to fight for life to give her more years [with me]. What about what I taught my daughter? She saw me fight for life. That’s someone teaching her that teenage problems aren’t so bad. She’s going to fight for life and succeed.”
Sophie Steele can relate. She was barely a toddler when her mother was diagnosed with anaplastic astrocytoma, a rare, aggressive stage 3 brain cancer. After surgeries and years of treatment, Sarah Steele is stable, but the tumor is still present, and she is considered terminal. But she’s alive.
“I watched her fight at a very young age,” Sophie Steele said. “When I was [young], I didn’t understand what death was; I just knew that she might be gone forever. So seeing her fight like that has instilled in me a will to keep trying no matter what my obstacle is … even going through everyday life and going to school with bullies or pettiness.
“I’ve learned that I can do it [persevere] because seeing her battle something that was so huge [like] having a brain tumor ... I better be able to get through one day of school,” she said.
Sarah Steele added to the nearly dozen voices testifying at the news conference who stressed that the legislation tells anyone who struggles that suicide can be a legitimate answer. These advocates for life, which included military personnel, expressed fear that the bill promotes suicide to those with disabilities, teenagers and injured veterans.
“I don’t’ think suicide should appear that you’re empowered to take your own life. We have fragile teenagers who are watching us,” she said.
‘Illness is Messy’
Those from the medical community who attended the Advocacy Day appeared bewildered, and possibly offended, that they would be supporters of a bill for physician-assisted suicide.
“This bill is in direct opposition to the Hippocratic Oath. This bill is a danger to our patients,” Dr. Suh said.
Added Dr. Randolph Knob, Fellow of the American College of Surgeons, “Assisted suicide is a big wall put between a good patient-doctor relationship because physicians, from Day 1, are preservers of life.”
Dr. Suh raised concern over those whose expert advice is being sought by the state Legislature on the subject, explaining that at the Oct. 6 hearing he attended in the Appropriations Committee, a lawyer from an organization dedicated to the rights of terminally ill patients provided testimony before lawmakers.
“You wouldn’t talk to a car mechanic about getting surgery,” he said, wondering how many opinions of medical professionals were being taken into account.
Patricia Staley, a hospice nurse from Mercer County, also questioned the motivations of the legislation. She said none of the thousands of patients she’s cared for have ever expressed an interest in suicide.
“It is not being requested by the patients, their family or their caregivers,” she said. “What is requested is pain relief, physical support, spiritual guidance and healing of family relationships.”
Henry said disease, suffering and even disabilities aren’t something today’s society likes to think about. “We’ve created a culture where we want everything to be neat and clean,” he said. “Terminal illness is messy. It’s difficult to watch someone we love and care about be ill.”
Though the bill provides that a caregiver, guardian or health care representative would not be authorized to take any life-ending action without the patient’s request, Dawn Teresa Parkot, a quadriplegic motivational speaker with athetoid cerebral palsy, still has concerns. Parkot was in attendance at the Advocacy Day with her father. She uses a computer-based communication system to speak.
“Physician-assisted suicide isn’t only for people who are terminally ill,” she said. “This rationale is often called the ‘slippery slope’ but would be more accurately called an incremental strategy. Once you open the door for killing of patients for one reason, it is nearly impossible to limit the ‘right’ to that one circumstance.”
“The legislation provisions refer to the patient choosing to self-administer … someone else could put the pills in the patient’s mouth. Someone else could put the drug in a feeding tube or IV nutrition bag,” said Parkot, a University of Notre Dame graduate and the founder of the Climb Organization, which educates the public on disabled life issues.
As someone with a significant speech disability, she said she finds the legislation frightening. “If I am denied access to my communication device, someone speaking for me could successfully end my life.”