Ellen Kennedy is on a mission to fulfill her husband’s dying wish — to create options for terminally ill patients that he was denied.
Kennedy’s husband Leigh Lawton for years struggled with multiple myeloma — a form of blood cancer — before he died late last year. He underwent chemotherapy, a stem cell transplant, emergency treatments and had toxic reactions to medications.
And toward the end, Kennedy said, all he wanted was a medication that would end his life.
“One of the last wishes that my husband expressed was that I would advocate for this option for people who, unlike him, perhaps could choose this at the end of their lives,” Kennedy said. “This was an option that he deeply regretted he did not have. So it was his final request of me. And I felt an obligation to honor that dying wish.”
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Kennedy is executive director of World Without Genocide, and ahead of the 2024 Minnesota legislative session she said she’ll urge lawmakers to pass the End-of-Life Options Act, which would make it legal for terminally ill, mentally capable adults to be prescribed and take a medication to end their life.
She joined doctors, chronically ill adults, people who’ve experienced the death of a loved one and others on Wednesday to talk about the proposal and begin campaigning for its approval in St. Paul.
Under the bill, a person would have to get a sign off from two health care providers verifying that they are terminally ill and have a prognosis of six months or less to live. They would also need to be found to be mentally capable of deciding they want to take the medication and not being coerced to take it.
There could then be a separate mental health assessment if either provider has doubts about a patient’s capacity to opt in. If a patient meets all the criteria, a physician could provide them the medication and the patient can choose to take it, ending their life.
Ten other states, along with Washington D.C. have enacted similar measures, and advocates hope Minnesota will become the eleventh.
The bill didn’t get a hearing this year as lawmakers focused on writing a two-year budget and approving a stack of policies that DFLers had been waiting years to get across the finish line.
But the bill’s authors say they think 2024 will be the year to pass the proposal. Sen. Kelly Morrison, a Deephaven, Minn., Democrat, said she’s working to get the bill set for a committee hearing early in the legislative session and she’s trying to build bipartisan backing for it.
“There’s support for it across all demographic groups, and that includes political parties. So I’m reaching out to my Republican colleagues as well, their constituents want this bill to be passed into law. So I’m hopeful that this will end up being a bipartisan effort,” Morrison said.
Historically, the proposal has had stronger backing from legislative Democrats than Republicans. And with Democrats in control over the House, Senate and the governor’s office, it appears to have a path forward, as long as Morrison can win over her DFL colleagues or pick up a Republican or two to bridge the narrow gap in the Senate.
Some faith organizations and Minnesota Citizens Concerned for Life have opposed the bill in years past and say they’ll keep up their efforts to block it going into 2024. They said there needs to be a check-in with a mental health professional required as part of the assessment.
“It’s something that we’re going to try and inform more folks about what the dangers are, and why this is not a road that we should be going down. And we should be working to make sure that patients get all the care that they need, including palliative care and so forth. But that this is a dangerous direction,” said MCCL Communications Director Paul Stark.
The danger, Stark said, is that people who are depressed could choose to end their lives without seeing a psychiatrist or being fully evaluated. Supporters of the measure say that’s unlikely.
The lawmakers and doctors who have supported the bill said it would help terminally ill patients to end their suffering. They also said that it can help start conversations between physicians and patients about end of life, which can be difficult.
Dr. Joanne Roberts practiced palliative care in Washington — a state that has had a similar law on the books for more than a decade— and she said it helped end the “conspiracy of silence” at the doctor’s office.
“We saw more patients bringing up the issue of end of life care with their doctors, because they felt empowered over the law,” she said. “So we had more conversations around end of life care, no matter what people chose.”
Lawmakers are set to return to St. Paul for the 2024 legislative session on Feb. 12.
DANA FERGUSON: Thank you for having me, Cathy.
CATHY WURZER: This issue has surfaced in past sessions, Dana. As you know, it's been called different things in the past. Opponents have called it assisted suicide or physician-assisted dying. Supporters have called it death with dignity. What does the proposed legislation say?
DANA FERGUSON: Yeah. So this legislation, which the authors call the End of Life Options Act, would make it legal for terminally ill, mentally capable adults to be prescribed and take medication that can end their life. To be eligible, a person would have to get a sign-off from two health care providers verifying that they are terminally ill and have a prognosis of six months or less to live.
They also need to be found to be mentally capable of deciding they want to take the medication and not being coerced to take it. There could then be a separate mental health assessment if either provider has doubts about a patient's capacity to opt in. If a patient meets all the criteria, a physician could provide them the medication, and the patient could choose to take it, ending their life.
CATHY WURZER: So it sounds like someone with dementia or Alzheimer's disease wouldn't be eligible.
DANA FERGUSON: That's right. Anyone with cognitive issues would be ineligible. And you couldn't write into your health care directive ahead of time that this is something you'd want if dementia or another illness affects your mental capacity over time.
CATHY WURZER: So Dana, would providers have to offer the medication, or could they opt out?
DANA FERGUSON: They wouldn't have to offer it. And if they chose not to, they would just have to disclose their policy to patients under the plan.
CATHY WURZER: OK. Would someone have to be a Minnesota resident to be eligible?
DANA FERGUSON: No, they wouldn't. Under the bill, adults from other states that meet the criteria could also be able to opt in.
CATHY WURZER: OK. So if someone gets the dosages, right, and then decides they don't want to move forward, what happens then?
DANA FERGUSON: Yeah. The proposal says that would be well within their rights. And just because they have a medication, they don't have to take it. And data from other states suggests that fairly often, patients apply, get the medication, and then they change their minds.
CATHY WURZER: I know that there have been concerns about what if someone tries to coerce someone else to take the medications. Would there be penalties if someone is found to have done that?
DANA FERGUSON: Yes there would still be penalties under the law for that. And the bill's supporters say the parameters that they have developed would make that really difficult to pull off since multiple health care providers need to assess a patient, and the patient would need to request the medication through a written and oral request.
CATHY WURZER: There was an event yesterday that I know you attended, where advocates talked about the measure. Who are they?
DANA FERGUSON: Yeah. So doctors, chronically ill adults, people who've experienced the death of a loved one, and others got together to talk about the proposal. And they said they're really hopeful that they can convince lawmakers to pass it in 2024.
Ellen Kennedy was one of the people in attendance. Kennedy is executive director at World Without Genocide, and her husband passed away late last year of multiple myeloma. Kennedy said her late husband inspired her to push for the change. And she said her husband couldn't travel to another state to end his life, and he experienced a lot of frustration and pain in his final months. She's hoping others won't have to.
- One of the last wishes that my husband expressed was that I would advocate for this option for people who, unlike him, perhaps could choose this at the end of their lives. This was an option that he deeply regretted he did not have. So it was his final request of me, and I felt an obligation to honor that dying wish.
DANA FERGUSON: Yeah. So as we heard, she's hoping that others will have the option, and she's willing to make the case.
CATHY WURZER: She mentioned that her husband had a fair amount of pain. And I'm wondering. Pain is something many terminally ill patients worry about, right? Is that the argument that advocates are making for the bill, that they want patients to be able to end their suffering?
DANA FERGUSON: It is. The lawmakers and doctors that have supported the bill say it would help patients that are really sick to end their life on their own terms and in a way that affords them more dignity. They also said that it can help start conversations between physicians and patients about end of life, which can be difficult.
Dr. Joanne Roberts practiced palliative care in Washington, a state that has had a similar law on the books for more than a decade. And she said it helped end the, quote, conspiracy of silence at the doctor's office.
- We saw more patients bringing up the issue of end of life care with their doctors because they felt empowered over the law. So we had more conversations around end of life care, no matter what people chose.
CATHY WURZER: So Washington has taken this step, the state of Washington. So has Oregon. How many other states have laws like this?
DANA FERGUSON: Yeah. There are 10 other states, including Washington, as you mentioned, along with Washington DC that have approved similar legislation. Oregon was the first, that was about 25 years ago. And other state legislatures have approved policies, or voters have passed measures like this via ballot measure.
CATHY WURZER: I know some states have tracked, have some pretty decent information about experiences in their respective states about who uses the medication. What have you found about that?
DANA FERGUSON: Yeah. The state data from those other states that have approved similar programs shows that it's very rarely used. And the bulk of patients who end their life with this medication have conditions like cancer or ALS and are older patients who are using this option.
CATHY WURZER: So this was introduced last session, kind of toward the end of session. What are the political realities for the bill here? I mean, does it stand a chance in the legislature?
DANA FERGUSON: Yeah the bill didn't get a hearing earlier this year. Mind you, it was a budget writing year, and DFLers plowed through dozens of priority policies that they'd been waiting for years to take up. But the bill's authors say they think that 2024 will be the year for this proposal.
Senator Kelly Morrison, a Deephaven Democrat, told me that she's working to get the bill on the calendar early in the legislative session. And she's trying to build bipartisan backing for it.
- There's support for it across all demographic groups, and that includes political parties. So I'm reaching out to my Republican colleagues as well. Their constituents want this bill to be passed into law. So I'm hopeful that this will end up being a bipartisan effort.
DANA FERGUSON: Historically, this proposal has had stronger backing from Democrats at the legislature than Republicans. And as you know, Cathy, the DFL has control over both chambers and the governor's office. So it seems like there is a path forward for it.
CATHY WURZER: I know there's going to be opposition at the Capitol though.
DANA FERGUSON: You are right about that. Some faith organizations and Minnesota citizens concerned for life have opposed it in years past, and they say they'll keep up their efforts to block it going into 2024. I spoke with Paul Stark, the communications director MCCL, and here's what he had to say about the bill.
- It's something that we're going to try and inform more folks about what the dangers are and why this is not a road that we should be going down. And we should be working to make sure that patients get all the care that they need, including palliative care and so forth.
CATHY WURZER: What are the dangers he's referring to? Do you know?
DANA FERGUSON: Yeah. Stark said he's worried that people who are depressed could choose to end their lives without seeing a psychiatrist or being fully evaluated. And it's worth noting supporters of the measure say that is unlikely since a patient would have to see at least two health care providers before they could access the medication.
CATHY WURZER: And of course, I think you mentioned this at the beginning of our conversation that the bill's sponsor hopes to get a hearing early in session this coming year in 2024. So we'll have to see what happens. Say, before you go, I'd be remiss if I didn't ask you. Do you have any updates about this situation over school resource officers pulling out of school districts for the school year over this new law that deals with restraining students?
DANA FERGUSON: Just a small update today, and that's that a group of more than 44 DFL lawmakers issued a statement opposing a special session to take up that law. And as Republicans had proposed, try to repeal it. They say that is the wrong approach. They don't want to repeal the law that prevents school workers and school resource officers from using prone holds or otherwise restricting students' ability to breathe. So no news of a special session at this point. But later today, groups that rather oppose the change, that don't want to limit prone restraints, are set to hold a news conference. So we'll hear from them very soon.
CATHY WURZER: OK. Dana Ferguson, thank you so much.
DANA FERGUSON: Thank you, Cathy.
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