The Packer family Photo: Stephanie’s Journey
Campaigns from California to New Zealand to legalise euthanasia in one form or another have focused on attractive young women with terminal cancer who want to avoid suffering pain or loss of mental function at the end of their lives. Their stories are powerful and persuasive.
But so are the stories that we hear less about, like that of California mother Stephanie Packer. The 32-year old wife and mother of four was diagnosed in 2012 with scleroderma, a chronic connective tissue disease which now makes it difficult for her to breathe and prevents her taking food except through a tube inserted in her arm.
And yet she is using the time she has left to advocate for other sclerodoma patients and the campaign against the state’s End of Life Option Act, modelled on Oregon’s assisted suicide law.
A new website following her journey includes a moving video testimony, and a media interview, from which the following quotes are taken.
“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.”
Part of the trouble for people with her condition, Stephanie says, is that “people around them and their doctors aren’t rallying for them.”
“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.”
The hardest thing for her is the thought of leaving her four children, aged 5, 8, 10 and 11.
“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.”
Stephanie seeks a peaceful death with grace and sees no dignity in taking her own life. She says it is scary that you have so many people pushing for something they’re not educated about. Basically, the bill is “bad medicine”. Its attraction for authorities is that it is cost effective: In comparison to a $100 prescription for suicide medication, some chemotherapy and cancer treatments can cost up to $3,000 per month. These costs dangerously narrow the sick person’s options.
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.”