When Stephanie Packer, a 32-year-old wife and mother of four, was told in 2012 that she had three years to live, the news didn’t sink in right away. It took a month for her to acknowledge that her days were numbered, and during that time many of her friends were unable to deal with the prognosis and deserted her.
Packer said she often feels alone, unwilling to burden her husband and family with her fears. “When you’re sick and dying, everyone around you is going through it, too,” she noted. “It’s a ripple effect that touches everyone around you, but you can’t let it consume you.”
She was diagnosed with scleroderma, a chronic connective tissue disease. Scleroderma affects each person differently; in her case, the disease has caused scar tissue to form in her lungs making it difficult for her to breathe. For the past month, she has taken all nutrients (TPN) through a PICC line because scar tissue from the disease has paralyzed her gastrointestinal tract, prohibiting anything by mouth except tiny sips of water.
Yet far from letting the terminal diagnosis define or defeat her, Packer has found new purpose in leading and participating in support groups for fellow scleroderma patients who are dealing with symptoms and effects of the difficult-to-diagnose disease. A former church youth minister, Packer also is actively working to combat California’s proposed End of Life Option Act, SB 128, introduced to the state legislature on Jan. 21. She speaks on media panels and at ethics conferences and tries to advocate for other dying patients.
Based on Oregon’s successfully enforced assisted-suicide law, the California legislation would permit physician-assisted suicide for terminal patients with 6 months or less to live. “Terminally ill people need to know they’re valuable and worthwhile,” Packer said. “They think they will add value to their lives by taking their own lives, that ending their lives sooner is more dignified. But if they really value their lives and the lives of the people around them, they could entrust their doctors to care for them properly and treat their pain.”
ADVOCATING FOR THE ILL
Because few rheumatologists specialize in recognizing and treating scleroderma, it can be difficult for patients with the disease to seek and receive the proper diagnosis and treatment, Packer said. Through diligent research, she discovered that UCLA has the world’s No. 1 specialist in the disease on staff, so he now leads her care team of 11 physicians.
Packer underwent seven rounds of chemotherapy last year to shock her system and hold progress of the disease at bay and her body responded well. Doctors think more chemotherapy later this year could continue to improve her health and make her a possible candidate for other advanced therapies, which have proven promising in other patients.
In the meantime, she increasingly advocates for proper information and tools for fellow scleroderma patients so that they can understand what’s happening to them. “It’s really sad and shameful that the people around them and their doctors aren’t rallying for them,” she said.
If everyone had a doctor who cared, no one would even consider ending their own life.
“If everyone had a doctor who cared, no one would even consider ending their own life,” she added. “Patients don’t know how to find that doctor or how to navigate the complicated health care system and they don’t have the tools or information they need. They’re so tired and don’t have the strength to deal with the fight. Instead, they’ll take the assisted suicide option because it’s easier.”
Packer’s own mother said she is proud of her daughter for speaking out against SB 128. And Packer’s10-year-old daughter Scarlett believes that her mother’s advocacy for terminally ill patients and her fight against the proposed physician-assisted suicide bill is her mission. “We all have a purpose in life,” Scarlett said. “Giving people faith and hope is her purpose.”
BEING SICK IS HARD
Immediately after learning her terminal diagnosis, Packer said, she worried about the woman her husband Brian might choose to help raise her children, ages 5, 8, 10 and 11, after her death. “‘My kids need a mom,’ I told my husband, ‘and here is who you’re allowed to marry,’” she recalled.
“The first time one of my kids got hurt, I realized that they will need someone to fix them when I’m gone,” she said. “Who will fix them when Mom’s not there? Those things are hard. Sometimes you figure them out and accept them and move on. But anything with my kids, I just think about it and get upset. Ultimately I shake it off and carry on.”
Still, one doesn’t have to be terminally ill to have excruciating pain in one’s life, she said. “We don’t hand a gun to someone who’s suffering from depression,” she said. “So we shouldn’t give the dying a handy tool to end their lives. It’s important instead to give terminally ill patients the tools to live. There is beauty in their lives; perhaps more even than before their diagnoses. You see life differently when death is imminent.”
Being in a vulnerable state herself, Packer believes that California’s proposed legislation takes advantage of the weak and their longing for simple solutions to complex and discouraging problems. “Being sick is so hard,” she said. “No one knows how you’re feeling. If there is no cure and no stopping it, your disease can consume you. If you don’t advocate for yourself and the proper treatment, you are a prime target for those who want you to take the easiest course and end your life quickly.”
For her own part, Packer said, she seeks a peaceful death with grace and sees no dignity in taking her own life.
If you don’t advocate for yourself and the proper treatment, you are a prime target for those who want you to take the easiest course and end your life quickly.
IT’S BAD MEDICINE
The international news about terminal cancer patient Brittany Maynard, who traveled to Oregon to ensure the legality of her own physician-assisted suicide, triggered empathy in many people, Packer acknowledged. “The story took on a life of its own, like an unstoppable train,” she noted. “It glamorized suicide as a heroic event.”
In fact, she said, advocates for SB 128 portray physician-assisted suicide as the perfect means for people who want to die with dignity. “They talk about choice, but it’s scary that you have so many people pushing for something they’re not educated about,” Packer said. “Compassion & Choices (one of the bill’s key proponents) is just trying to push the idea that others make your medical choices for you and not to let them. But this bill is bad medicine.”
By providing an effective, cost-efficient means of ending the lives of suffering terminal patients, Packer said, it narrows patients’ end-of-life options. In comparison to a $100 prescription for suicide medication, some chemotherapy and cancer treatments can cost up to $3,000 per month.
Written poorly, the proposed legislation creates a dangerous opportunity for caregivers, doctors and patients’ families to exploit and exterminate society’s most vulnerable population – the weak and immobile, both adults and children, in the name of choice and dignity, Packer said.
“I can’t sit and watch that happen without having something to say about it,” she said. “I can see solutions. It’s not easy, but life isn’t meant to be easy.”
I can’t sit and watch that happen without having something to say about it, I can see solutions. It’s not easy, but life isn’t meant to be easy.