‘I CAN’T KEEP DOING THIS’
Advocates want aid-indying law to ease pain, suffering
Kim Hoffman watched her mother, Ludmila Hoffman, suffer for two years and ultimately die of colon cancer. For the last eight years, she’s been living through her own battle with ovarian cancer, one that is pushing her to the edge of endurance.
She recently began a clinical trial at DanaFarber Cancer Institute in Boston that is showing some promise. It’s her last hope for relief from the agony of her disease.
But Hoffman is among those who favor a death with dignity law in Connecticut so that terminally ill people would have the right to end their lives on their own terms, instead of lingering in pain or heavily sedated on narcotics.
Hoffman was one of those who testified in an all-day hearing in favor this year’s bill, which the legislature’s Public Health Committee approved 24-9 on March 5. It was the first time an aid-in-dying bill has gotten out of committee. The bill also has drawn strong opposition, including from disability advocates who say it lacks protections
‘Terrible pain’
For more than three months before she started the trial, “it was a really steady and rapid decline, and I was at the point where I was so debilitated, really literally not able to hardly walk, just keeping up with my own daily living skills,” said Hoffman, 58, who lives in Glastonbury and was a social worker at Conard High School.
succeeds in abating her cancer, Hoffman is ready to end her life with a doctor’s prescription.
“I can’t keep doing this. I don’t know how much more I can possibly take,” she said. “I’ve never been able to get back to where I was. Each time there’s another round of treatment, the bar gets lower and lower. There’s not much room between living and dying.”
When Hoffman underwent surgery in 2013, doctors weren’t sure she had cancer. But after more than eight hours of surgery, a bowel resection and 50 staples on her abdomen, her surgeon “wasn’t able to get it all and he knew that and he told me that.” Since then, the pain has only gotten worse.
“As my process has progressed, the thought of getting to the point where the pain is either unmanageable, which is a very real possibility, or only manageable with a high dose of narcotics — that to me is awful and scary and tragic,” Hoffman said.
Hoffman prides herself on her healthful lifestyle. “I’m a person who before I was diagnosed never took any kind of medication, and maybe if I really injured myself … maybe I’d come home and take an Advil or a Tylenol,” she said. “I’m vegan and I don’t put junk in my body.”
Despite her suffering, Hoffman said she would not take advantage of an aid-in-dying law now if it were legal, because she’s committed to the clinical trial. “There were points literally five weeks ago, when I thought, if only. Had I not had this possibility, then yeah, I think it would have been good to have the option,” she said.
“Would I even go through with it? I don’t even know. I don’t know if I would be able to do it, but I know if I had the option it would be a comfort,” she said.
Hoffman’s wife, Joy Cipollo, and other family members and friends would support her decision, she said. “If I’m not responding to the trial, then I won’t be in the trial anymore … and that’s it,” she said. There would be nothing left to help her.
People who oppose aid in dying say palliative care is a better route than taking lethal drugs, that there is medication to ease the pain. But, Hoffman said, “it’s not true. It’s just not true, and I know because I’ve asked my doctors.”
Hoffman said she is not clinically depressed. “I am battling a terminal illness. That’s depressing,” she said. “If I could be cured or go into remission I would be ecstatic. … I’d go back to work. … I’d be training my butt off to get back into shape.”
She also rejects the idea that aid in dying is suicide. “The difference between someone dying in hospice care on a steady morphine drip [and aid in dying], it’s length of time,” she said. “The person’s not getting better. It’s just when that person gets to the point where their heart gives up … or the morphine wears the body down to the point where an organ gives up.”
Choosing when to die so a person “could still have the loving, vibrant moment with their family” is preferable, Hoffman said, to forcing family members “watch you die for days and weeks and months with no interaction, and all you’ve got is tears.”
Barbara Donalds
When Jennifer Barahona’s mother, Barbara Donalds of Stamford, began slurring her words, her family did not realize she had amyotrophic lateral sclerosis, or Lou Gehrig’s disease. But Donalds’ illness progressed rapidly.
There was “nothing any of us could have done,” Barahona, who lives in Fairfield, said. “The decline was just so rapid that it was impossible to keep up with her needs.” Soon she was using a DynaVox communication device and was on a feeding tube.
The last notes Donalds wrote to Barahona were, “Would you do my eulogy?” and “I’m not suicidal, but I hope the end comes quickly.”
A former opera singer and music director , Donalds, a mother of six, “lost her ability to speak. She lost her ability to move,” Barahona said. “There was no quality of life.”
Barahona said a home health care worker did not work out, so her mother was moved to hospice.
Donalds then said, “I don’t want to continue any nourishment through the feeding tube,” her daughter said. “Let’s let nature take its course and not prolong the inevitable.” Her doctor said she would die within days, a week at most.
But she lived for another 21⁄2 weeks. No longer able even to blink yes or no responses, “She was in pain and we literally had zero way of knowing what was going on,” Barahona said.
She doesn’t know whether her mother would have agreed to aid in dying and Donalds was not able to communicate her wishes in any case, but, Barahona said, “Seeing what she went through, God forbid if this was my fate in the future. … I would probably want to have that option.”
Barahona said legal aid in dying would bring comfort to many. “We know that people take matters in their own hands in really horrible and traumatic ways” when what they would prefer is “a planful and peaceful transition,” she said. “Even the peace of mind of having the option in your back pocket, so to speak, gives peace of mind.”
Mike and Jennifer Mizzone
Jennifer Mizzone’s husband, Mike, testified before the Public Health Committee in favor of an aid-in-dying bill in 2018, five years after he was diagnosed with ALS.
An athlete who had competed in semi-pro football, softball and triathlons, Mike Mizzone told the committee he knew how he would die. “I will slowly die of asphyxiation,” he said. “I live in constant fear of watching my 10-year-old son watch me choke to death at the end of my life. It’s a constant nightmare.”
Mizzone knew something was wrong very early. “He was pretty savvy,” said Jennifer Mizzone, an Orange resident. He noticed that the muscle between his thumb and index finger looked “like it was carved out with a spoon.”
In Mike Mizzone’s case, the disease progressed slowly but inexorably. “His started in his hands … It went to his arms and the swallowing got a little hard,” Jennifer Mizzone said. “I would say for the first two-and-a-half to three years I didn’t notice as much.”
Mizzone said her husband didn’t want to let on how ALS was weakening his body, making daily tasks difficult. One day, a special toilet arrived. “He was just in protection mode,” she said.
On July 15, 2019, “he passed away … just like he predicted. He died of asphyxia,” Mizzone said. “He didn’t have to die like this.” He was 57 years old.
Mizzone, like other advocates, pointed to the safeguards in the bill: Two oral requests, at least 15 days apart, and one written request must be made to the patient’s primary physician, with two witnesses present when the written request is made. A consulting physician must verify that the patient is mentally competent, is acting voluntarily and has a terminal illness, with death expected within six months.
In her own testimony before the Public Health Committee, Mizzone said, “Why does someone with ALS in Orange, N.J., have more options at the end of life than in Orange, Conn.?”
Between them, the Mizzones have five children, now ages 13 to 34, two of whom were living at home when Mike died. At the end, “his breathing was very raspy. … Those last five days it was pretty horrific. … You don’t want the kids to see too much. You’re trying to give him dignity.”
Mike Mizzone died in his asleep after several days of suffering. “I woke up at 5:35 a.m. in a shocked state,” Jennifer Mizzone said. “I sat straight up and he was gone. But the days leading up to that were horrible for him. Every moment of every day, just suffering.”
James and Pam Naughton
James Naughton has been an activist promoting aid in dying for three years. His wife, Pam, died of pancreatic cancer in 2013 at 66. Born in Middletown and a graduate of the Yale School of Drama, he won Tony Awards for his roles in “City of Angels” and “Chicago.” He lives in Weston.
Pam Naughton had cancer for four years and for a while the couple flew to San Antonio every week for a clinical trial of a chemotherapy drug. “When you’re in that situation, you do whatever it takes,” he said. “It ultimately ceased to be effective.”
At the end, his wife was on a morphine pump and oxygen. “One morning she looked at me and said, ‘Jimmy, I don’t want to wake up anymore. We’ve always known this is a fatal disease,’” he said. “Here I had been taking care of her for four years and we’d been together for 50 years and I just realized I wasn’t going to be able to help her.”
While he thinks “momentum is starting to move in our direction” in the legislature, he recognizes the opposition from the Catholic Church and the disability community.
He said people with disabilities “are afraid that people who are disabled might be coerced into ending their lives. There has not been any case citing that kind of abuse” since Oregon became the first state to legalize aid in dying in 1997.
“I think they’re fighting a battle they don’t need to fight,” Naughton said.
Lack of protections feared
Catherine Ludlum of Manchester, a member of the anti-aid in dying group Second Thoughts Connecticut, believes people with disabilities do have a need to fight. She uses a wheelchair, a feeding tube and a breathing aid at night, and said without those things she could be considered terminally ill.
The fear of coercion by family members or insurance companies because of the cost of their care is what drives the disabled community, she said.
“The laws are structured around privacy. … There is no possibility of identifying wrongdoing that might occur,” Ludlum said.
She said this year’s bill has reduced the protections included in previous years’ proposals. “They have taken out any restriction on who can be the witnesses,” so heirs or others “who stand to gain” from a person’s death may take that role.
Also, “it used to say the consulting physician could not be in practice and share offices” with the primary care physician. That provision has been removed and, Ludlum said, she believes a doctor is unlikely to counter the opinion of someone in the same practice.
“I think people really need to think carefully and be aware of the things that are being sacrificed in an attempt to get the bill through,” Ludlum said.
She said, “I understand and, believe it or not, I and my colleagues do have a lot of sympathy for difficult situations,” but the focus should be on keeping people alive and pain-free.
“One of the issues with assisted suicide, I feel, is that it creates a disincentive to make better palliative care practices,” she said. “If palliative care is not doing the job for people, I think we need to focus on that and get it better.
“As a society, we have to try and make sure that people don’t make decisions like this based on desperation and people not wanting them around,” Ludlum said.
Christopher Healy, executive director of the Connecticut Catholic Public Affairs Conference, did not return a call seeking comment on the bill. In his testimony, he said, “Catholic teaching condemns assisted suicide because it, like murder, involves taking an innocent human life: suicide is always as morally objectionable as murder.”
He also said the bill discriminates against people with disabilities by allowing people to end their lives before they become disabled, that there is no requirement that an effort be made to alleviate pain, that the “good faith” standard of medical care is too low and that the bill undermines the work of the state Suicide Advisory Board.