Stephanie Packer wants to be the face of a Right to Live movement — for as long as she draws breath.
“I just want to spend every last second with my kids,” Packer, a terminally ill married mother of four kids, ages 7 through 13, tells me.
Nearly two years ago, Brittany Maynard, at just 29 years old, became the face of the Right to Die movement now sweeping across the United States. In Oregon, surrounded by loved ones, she took her own life, legally, before a brain tumor could do it for her, with a self-administered overdose of physician-prescribed barbiturates. I supported her choice to end her agony.
But at what cost?
Packer struggles to open her eyes each blessed morning. And the cultural landscape to which she wakes has shifted dramatically of late into one of pro-death. In June, her home state of California enacted a law permitting doctor-assisted suicide. And something terrible happened.
Premature passing away with medical help is now widely seen as preferable to painful, prolonged living, Packer says. But she’ll fight to live with every last labored gasp drawn from her oxygen tube before ultimately accepting a natural end.
“I want my kids to see that death is a part of life,” she says.
At age 29, Packer was diagnosed with scleroderma, a chronic autoimmune disease that causes scar tissue to form in her lungs. A doctor told her she had three years to live. Now 33, she has outlived the death sentence.
But as her condition deteriorates, she’s finding little support for her fight to stay alive.
Since California’s End of Life Option Act took effect, attitudes expressed by sick members of support groups she’s run or been involved with have changed to the grim. Where once members exchanged messages of hope, “people constantly are talking about, ‘We should be doing this [dying].’ ”
“I just wanted no part of it,” says Packer, a devout Roman Catholic.
Stephanie Packer and her family
Then her doctors suggested that switching to another chemotherapy drug might buy her time. Her insurance company refused to pay. She says she asked if the company covered the cost of drugs to put her to death. She was told the answer is yes — with a co-payment of $1.20.
“My jaw dropped.”
Months later, after Packer threatened to tell her story to the media, the drug was approved. Sean Crowley, media relations director for Compassion & Choices, a “death with dignity” advocacy group, told me that treatment delays or rejections are “not uncommon” in the cost-conscious insurance industry.
“We’re heartbroken for this woman,” Crowley says. “People battle drug companies every day. They go through awful pain and suffering just to get well. We think people should be able to do whatever they want” — including continuing to live.
“There’s a bright line that shouldn’t be crossed,” Jennifer Lahl, founder and president of The Center for Bioethics and Culture Network, tells me. Patients are entitled to refuse medical care, Lahl points out. But “doctors shouldn’t be killers. They should be healers.” Lahl co-produced, co-directed and co-wrote a documentary in which Packer presents her case against aid in dying — “Compassion and Choice DENIED.”
Doctors legally may help aid the deaths of mentally competent adults believed to have six months or less to live in Oregon, Washington state, Vermont, California and Montana. A proposal to join them is on Colorado’s ballots in the Nov. 8 election, and similar initiatives are being considered in the Council of the District of Columbia and the New Jersey and New York state legislatures.
Assisted suicide is also available in Canada, Japan, Colombia and parts of Europe. Last year, a severely depressed 24-year-old woman received government approval to obtain a lethal injection in Belgium. The woman reportedly changed her mind and decided to live.
Lawmakers in the Netherlands are considering a proposal to allow older people who don’t suffer from terminal illnesses, but feel they have “completed life,” access to aid in dying.
For Stephanie Packer, the only route to a dignified demise is to battle to the finish. I applaud her bravery.
I wish everyone would back her choice.