In Vt., Advocates Say Medical-Aid-In-Dying Patients Should Have Access To Telemedicine
More than 70 Vermonters have used prescribed medicine to end their lives since state lawmakers passed the death with dignity law in 2013.
But advocates say the law needs to be updated, and they’re asking lawmakers to consider changes that include allowing patients to use telemedicine when talking with their doctors about ending their life.
Karen Oelschlaeger had not thought much about Vermont’s medical-aid-in-dying law before she got her cancer diagnosis in 2018. She was 33 at the time, and in pretty good health before the pain in her midsection got so bad that she ended up in the ER at Dartmouth Hitchcock Medical Center.
Oelschlaeger had surgery to remove some of the tumors in her gut, but the doctors told her that the stomach cancer would likely return, and eventually kill her.
And that got her thinking about how she wanted to spend her final days.
“What scared me about a recurrence was not death, but this interminable suffering,” Oelschlaeger said. “That was what really, really scared me.”
And so from her hospital bed, with tubes coming out from all over her body, Oelschlaeger learned about the promise, and the challenges, of Vermont's death with dignity law.
“From the hospital, I was frantically scrambling to just find a provider who would work with me,” she said. “And the provider I could find to work with me was out in the Northeast Kingdom, that was the closest provider I could find. And I felt like I needed this stuff yesterday.”
When Vermont lawmakers wrote Act 39, Vermont’s patient-choice-at-end-of-life law, they didn’t want people making a decision like this over the phone. Telemedicine was not widely used at the time, so the law said a patient had to meet face-to-face with a doctor, twice, when discussing end-of-life medication.
And so Oelschlaeger had to drive 45 minutes to talk with a doctor about getting medication that would hasten her death, once the cancer came back.
“I vomit all of the time,” Oelschlaeger said. “And so hopping in the car to head out to the Northeast Kingdom to sit in the waiting room, to meet with a doctor I’d never met, to you know, vomit in a emesis bag in front of her after vomiting in the car, was not my idea of a good time.”
"When the law was passed, there was a lot of concern about making sure that only people who qualify get to use medical-aid-in-dying, and so there was a lot of focus on safeguards. And the safeguards are working, but it's also now clear that some of the process causes delay, and suffering for patients." — Betsy Walkerman, Patient Choices Vermont
Diana Barnard is a doctor from Middlebury who’s supported Vermont's medical aid in dying law from the start. And she says when the law passed eight years ago, it made sense to her to require patients to meet with their doctor.
“The intent of the initial law was to make sure that this was a thoughtful conversation, and not a fly-by-night ask with a quick telephone call,” Barnard said.
She noted that the COVID-19 pandemic showed doctors how much more telemedicine can help patients, especially in rural areas.
“COVID may have been what brought to light this deficiency,” Barnard said. “But really, if you think about it, it was an issue — an unintended issue — with the wording of the law that we would simply like to correct. Because we would want patients pursuing medical aid in dying to have the same access to expert medical care as any other patient.”
For Oelschlaeger, meeting virtually about her illness has been a no-brainer, and over the past year she's used telemedicine all the time to communicate with her doctors.
“So I do think technology has advanced a lot,” Oelschlaeger said. “And I think 99% of my appointments now are telemedicine. And I love them, and it enables me to go to more of them.”
But Carrie Handy, who's with the group True Dignity Vermont, says a patient should have to meet face-to-face with a doctor to talk about getting medicine to end their life.
Handy says the safeguards are in place to protect people who might be vulnerable to coercion, and allowing that conversation to happen virtually softens the rules that were agreed to when the law first passed.
“It's really one of the worst possible changes that they could make,” Handy said. “If anything, we should have more safeguards built into this law than we do.”
"If anything, we should have more safeguards built into this law than we do." — Carrie Handy, True Dignity Vermont
Vermont was only the second state to allow patients to ask for end-of-life medicine when Act 39 passed. Today, 10 states and the District of Columbia offer the option.
Betsy Walkerman, who's with Patient Choices Vermont, says Vermont is the only state that requires patients to meet with their doctors. The others allow telemedicine, or give patients the option of requesting the medicine over the phone or through a letter.
Walkerman says the face-to-face provision in the Vermont law was put in to prevent abuse, and make sure someone was not getting the end-of-life medicine for someone else. But the Vermont Department of Health has never had a single report of abuse since the law passed, and so Walkerman says it's time to relax the in-person requirement.
“When the law was passed, there was a lot of concern about making sure that only people who qualify get to use medical aid in dying, and so there was a lot of focus on safeguards,” Walkerman said. “And the safeguards are working, but it’s also now clear that some of the process causes delay and suffering for patients.”
“I think one reason I made the time to voice my opinion about the telemedicine requirement is, if it can make a difference for someone else during such a difficult time of their life, and just anything to spare them any additional suffering, or burden, during what is such a challenging time emotionally, physically, spiritually, that would be worth it.” — Karen Oelschlaeger, medical-aid-in-dying patient
Before going on medical leave, Oelschlaeger worked as a prosecutor in Windsor County. She spent most of her time advocating for victims of domestic violence, and others who she says needed someone to fight for them.
Oelschlaeger supports a bill that was introduced this year to change the death with dignity law. The bill never made it out of committee, as the Legislature was consumed by pandemic-related bills.
Advocates say they will take it up again next year. Oelsclgaeger knew she likely wouldn’t be alive by then. But she still wanted her voice heard.
“I did not know if I would be alive for this interview today, because, you know, my symptoms have gotten really bad again,’ she said. “I think one reason I made the time to voice my opinion about the telemedicine requirement is, if it can make a difference for someone else during such a difficult time of their life, and just anything to spare them any additional suffering, or burden, during what is such a challenging time emotionally, physically, spiritually, that would be worth it.”
Karen Oelschlaegar died on Monday, about a week after her interview with VPR. She used the medicine that was provided to her under Vermont's medical-aid-in-dying law.
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