Despite living with a crippling terminal disease that has stolen control of her body, Bobbi Jacobsen calls herself lucky.
For 20 years Jacobsen has lived with ALS, a degenerative disease that has progressively cut off the signals between her brain and her muscles.
Jacobsen’s precious time since the diagnosis has far surpassed the average life expectancy for ALS sufferers, giving the Richfield resident a chance to champion the rights of terminally ill patients to end their painful battles on their own terms.
“The past few years, I have put all my energy into lobbying for physician aide in dying laws,” the 67-year-old told the Sun Current in an email.
Jacobsen also told her story at the State Capitol March 1, as the End-of-Life Option Act was introduced. The bill would make it legal for terminally ill patients in their last months of life to self-administer a drug that would bring a peaceful death and circumvent the end-of-life pain that awaits.
Making a statement through a computerized voice on her iPad, since she can no longer speak intelligibly, Jacobsen sat in her motorized wheelchair as she described her future during the press conference introducing the bill.
“Eventually I will lose my ability to live without being attached to a machine that will breathe for me, but my thinking will be sharp and my senses intact,” she said. “Not allowing people like me a peaceful alternative is wrong. Before I reach this stage I’d like to have options for a peaceful, painless death.”
According to the ALS Association, only 5 percent of people with the disease live 20 years beyond their diagnosis, and Jacobsen has put her time to use, saying she’s taken her cause to Washington seven or eight times.
As part of her activism for fellow ALS sufferers, she is proud that her story was instrumental in passing a law in 2000 that allowed ALS patients to waive a law requiring a 24-month waiting period before receiving Medicare coverage. Waiving the waiting period was especially significant since the average life expectancy from the time of an ALS diagnosis is three years, according to the ALS Association.
As Sen. Chris Eaton (DFL-Brooklyn Center) proposed the legislation, she explained the option would be reserved for terminally ill adults with a prognosis of six months or less to live.
The fatal drug would have to be self administered, and the patient would need to have full decision-making capability, Eaton explained. The option would be reserved for patients not suffering from mental illness, and drug-induced death would have to be the last option after all treatments fail, she added.
The bill is modeled after Oregon’s Death with Dignity Act, which has been on the books for 20 years. Six states now have similar laws.
Eaton first introduced Minnesota’s version of the bill two years ago, to no avail. It used to be called the Compassionate Care Act.
“Compassionate care incorrectly implies that the terminally ill adult is the recipient of compassion rather than the active decision-maker in their end of life care,” Eaton said.
“I also reject the term, ‘death with dignity,’ because it implies there is only one way to die with dignity, and I believe each of us defines dignity in our own way.”
Eaton also rejects the terms “euthanasia” and “assisted suicide,” since the life-ending drug would have to be self-administered.
Opposition to the proposal is strong. “A new bill that aims to legalize assisted suicide in Minnesota is marred by many of the same unacceptable flaws that derailed a similar effort last year,” states a press release from the MN Alliance for Ethical Healthcare.
That organization argues the end-of-life option lacks sufficient safeguards, potentially allowing for elder abuse and harm to vulnerable individuals. Opponents cite a gap in treatment that they say incentivizes death over life.
“Our lawmakers should reject assisted suicide, and should instead focus on making Minnesota a state where no one feels like they need to take their own life because they can’t access quality treatment,” Dr. Steve Bergeson, a family physician from Shoreview, said through the oppositional group.
Speaking March 1, Eaton did not expect her bill to receive a hearing this year. The uphill battle is not lost on Jacobsen, either.
“I think fear plays a big role,” she said in a written answer to questions from the Sun Current. “People are afraid it will be abused, and vulnerable people will become victims. There is 20 years of data from Oregon that shows not one case of abuse.”
Proponents of the end-of-life option point toward a 2016 poll, conducted by Greenburg Quinlan Rosner Research, finding that 73 percent of Minnesotans support medical aid in dying.
Living with ALS
Jacobsen moved from Burnsville to the City Bella senior high-rise in Richfield 13 years ago as she and husband Chet, her primary caregiver, sought living quarters more conducive to her debilitating condition.
Parents of four children, the couple’s youngest was a senior in high school when Jacobsen was diagnosed. At the time, she also had two infant grandsons. At the time, she wondered if she would be able to watch them play T-ball. One of those grandsons is now a junior at St. Thomas. The other is a U.S. Marine. The Jacobsens have five other grandchildren on top of that.
“My biggest salvation has been my grandkids; being able to watch them each grow into their own little person has been so rewarding,” she wrote.
Chet Jacobsen has noticed his wife’s advocacy has also helped her cope. “It gives her a little bit of focus, for one thing,” he said.
Bobbi Jacobsen stays busy in other ways, too. Four years ago she adopted a Yorkie that had been used as a mother at a puppy mill, and she has since been heavily involved in the organization, Underdog Rescue.
Before and for some time after her diagnosis, she worked at the Minneapolis-St. Paul International Airport in addition to other customer service work. Up until about 12 years ago, her husband also worked at the airport, as an air traffic controller.
Now caring for his wife full-time, Chet Jacobsen acknowledged that emotionally, “it’s kind of up and down for me.”
He recently got away for a while for a Lake Tahoe vacation. While the trip provided a breather, it was not an escape from reality.
“I thought, boy, it would have been nice if Bobbi were healthy to make a trip like this, just go for a walk in the forest, that sort of thing,” Chet Jacobsen said.
He’s hopeful that people like his wife will have the end-of-life option someday.
“I think they will,” he predicted. “I don’t know if it will be in the next year or two. I think it’s coming.”
“I am not championing this cause only for myself,” Bobbi Jacobsen wrote, “but for future generations of Minnesotans. I know SO many people who would like to have the option. Right now. Today.”
When Bobbi Jacobsen was first diagnosed, she and her husband discussed moving to Oregon, the only state with a death with dignity law at the time. They found such a move unpractical, though.
“I couldn’t face leaving my family here, to die alone in Oregon,” she wrote.
So in Minnesota she stays, her purpose intact.
Contact Andrew Wig at firstname.lastname@example.org or follow him on Twitter @RISunCurrent.