Stephanie Packer was told in 2012 that she had three years to live. So far, the doctors that made that prognosis are off by just 10 years.
Packer, 42, who lives in Orange County, Calif., visited Dover on March 11 to share her story with Delaware representatives who were then considering House Bill 140, which would legalize medical aid in dying, also called physician-assisted suicide. She was there to show them that there is life beyond that dire prognosis and to urge them to vote against passage of the bill.
HB 140 eventually passed the House of Representatives by a 21-17 vote with three legislators absent. It now awaits action in the Senate Executive Committee.
Packer, who has told her story all over the United States, spoke with The Dialog recently.
In 2012, she was diagnosed with scleroderma, an autoimmune disease that causes thickening and hardening of the skin and connective tissues. It can also affect internal organs. She went back and forth between palliative and hospice care, but outlived the three years she was told she had. As one can imagine, hearing that news from a doctor is quite jarring.
“It took me a little while to process what the doctor had told me. It was so fast in the hospital when he told me I was terminal,” she said.
Her first thoughts were about her four young children and who would be there for them.
“There’s something that comes over you when it comes to your kids and you might not be there the next time they need somebody,” Packer said. “It was a tough pill to swallow.”
She was then told in 2016 that she wouldn’t live more than another six months. She is long past that, and she tells people in her journeys that doctors base their prognoses based on an average or typical progression of specific diseases.
“With my disease, it’s really been such a roller-coaster journey,” Packer said. “I would get so, so sick, and then I would start getting better. ‘Oh, my gosh, I can do this now, and I wasn’t supposed to be able to do this.’ We’d start going, and I’d get really sick again. It kept happening over and over again.”
Her story, she stressed, is not unique. It’s just been told in statehouses across the country, at conferences and on YouTube. She worries that others who have been diagnosed with a terminal illness will think they only have so much time left and in their uncertainty may choose to end their lives.
If Packer had gone that route, she said she would have missed out on so much with her family; after remarrying, she now has three stepchildren as well.
“All these things in life would have been taken away had I had that option,” she said.
In Dover, Packer was able to speak briefly with a few legislators. All, she said, listened to her and responded respectfully. She said she just tries to share her story even though it’s an “uncomfortable conversation” to have. She likes to remind lawmakers how dangerous physician-assisted suicide is.
In addition to telling them that predicting a sick person’s future is an inexact science, Packer speaks about the risks to vulnerable populations and how insurance companies come into play. In her case, her insurance reversed its initial decision to cover expensive treatments that would extend her life, but the insult didn’t end there.
“I didn’t have the income to pay for a treatment that my insurance company was going to pay for, then it got denied shortly after the law in California was passed. But I could get the assisted-suicide medication for a co-pay of $1.20. It was such a jarring feeling to realize that that’s what my life was worth,” she said.
“End-of-life care is the most expensive care out there. Insurance companies, they’re businesses. They’re there to make money. It’s just the cheaper option to have people kill themselves than to take all these expensive treatments to extend somebody’s life.”
Sick people do not want to be a financial burden on their families, Packer continued, and that is one of the main reasons why they choose assisted suicide. Pain is not the driving factor.
Packer works with the Patients Rights Action Fund and was in Dover with Jessica Rodgers, the organization’s coalitions coordinator. Rodgers said Packer’s story shows the impact of assisted suicide on people who would never consider taking their own lives.
“It’s hard to look someone in the face who was denied treatment after assisted suicide was legalized and still thinks this is a good idea,” Rodgers said.
When Packer talks to proponents of legislation such as HB 140, she said she lets them know that the decision of a few ends up affecting others negatively. It affects how insurance companies review situations and how things are priced and handled. One of her fears is that it will affect how diseases are researched if society becomes “so normalized and so quick to get rid of people who have these illnesses. Why put the money into curing them anymore? Why are we doing that research?”
It also makes suicide appear normal, and that has never been the case in our society.
“It’s just something that has never been acceptable,” she said. “We have always tried to help people who want to kill themselves.”
