The Alaska House Health & Social Service Committee (HSS), Thursday afternoon, heard House Bill 54.
HSS is the first committee of referral and this was the second hearing on the bill, sponsored by Rep. Harriet Drummond (D-Anchorage).
In states where such measures have been enacted — California, Colorado, Oregon, Vermont, and Washington — the legislation is generally referred to as the “Death with Dignity” act and is aimed at allowing terminally ill patients to coordinate end of life treatment with their physicians.
Drummond filed a similar bill last session, HB99. That attempt also was referred to House HSS. It, too, received two hearings the first year it was introduced, but was shelved and expired at the close of session without further attention in 2016.
“House Bill 53 is about patients’ rights and end of life care,” Drummond said, with staffer Kristin Kranendonk seated next to her. “It allows patients to have important end of life discussions with their own doctors. Doctors they already know and trust. It allows a patient to ease their pain and suffering and live and die on their own terms, according to their own beliefs.”
Public testimony lasted about a half hour and succeeded in facilitating the views of everyone who wished to opine. The conversation was emotional, because the bill is intimately a matter of life and death — which could potentially result in a lot of grey area with a bill that takes medical diagnoses, which don’t consistently operate according to forecasts, and allows terminally ill patients to opt out of treatment.
Take, for instance, the case of James “J.J.” Hanson, who testified as the Chair of the Patients Rights Action Fund, which, according to their website, “provides financial and strategic support throughout the U.S. to protect the rights of patients and people with disabilities by opposing assisted suicide legalization efforts.”
Hanson is a U.S. Marine war veteran, husband, and father, who went to the hospital in 2004 after experiencing a grand mal seizure. After being cleared by doctors after a CAT Scan, he told the committee, his wife insisted an MRI. That’s when they found two inoperable brain tumors — Grade Four Glioblastoma.
At the time, his son had just turned one.
“When I was diagnosed, the neurosurgeon told me that it was inoperable and that I probably only had fourth months to live. I had not only one but three different doctors tell me that there was nothing I could do about it,” Hanson told the committee, via his wife, because Hanson was unable to read. “I, fortunately, did not listen to those doctors. I chose to do standard treatment and experimental treatment.”
Those four months have turned into three years, which he has dedicated to fighting legislation like HB54.
Hanson said it hasn’t been easy.
“There has been a lot of physical and emotional pain. I’ve had countless seizures. There have been days where I have completely lost all of my most basic abilities. At some points, I’ve been unable to walk, talk, read, or write,” he said.
But, if this legislation was legal at the time I was diagnosed and told I was terminal, I could have gotten a doctor prescribed suicide pill when I was in good spirits and motivated to fight my illness. I could have had them with me as I laid in bed during month five when I was in pain and questioning whether life was worth living. I could have had them on my night stand and no doctor would have have been with me as I wondered, am I too much of a burden to my family? I could have had them at a time when my entire family was under a great deal of stress trying to cope with my illness, and then I ask the question, is ending my life easier than this? I thought about it and I considered it. Ultimately, I did not end my life and that is why I am here today.
“If I had suicide pills with me in those dark moments, I might not be here today. And you can’t undue that,” he concluded. “You can’t unmake that decision. There’s no going back. You’re dead. My wife would be without a husband and my son would be without a father.”
Hanson, through his wife, said it’s a very dangerous situation where suicide becomes normalized among terminal patients, especially among the veteran community who may have a terminal illness compounded by depression and PTSD.
Dr. Jeanne Anderson, a medical oncologist in private practice at Katmai Oncology Group in Anchorage who received her medical degree from Stanford and trained at the University of Washington, praised Hanson in her testimony.
“From a standpoint of a physician, the concept of terminal and defining it as you have less than six months to live is just a fallacy and I’m very strongly against that,” she said. “Physicians come up with estimates on survival duration based on published data. Those data come from studies that were performed years earlier. There also using treatments that are not the most up to date treatment. And is also based on narrowly based on narrowly defined patient populations. We then use our clinical judgment to say whether or not the patient fits those published data. Even well informed, well meaning oncologists, such as myself, make drastic mistakes in estimating prognoses.”
Anderson cited three specific examples in which patients she had treated would have fallen within the categories qualifying patients as likely to die within six months who had lived years — the time frame that would qualify someone for physician assisted suicide under the auspices of HB54.
“Cancer is very unpredictable. We will say that they’re going to die soon, but we don’t know the natural history of one person’s individual cancer. There’s changes in the aggressiveness of it, there’s changes in unexpected response to treatment, there’s new treatment options available. There’s inaccuracies in assessing the stage or the response to treatment. And then there’s also the patients’ inherent will to live,” she said.
Testimony was lopsided, with all but one opposing the measure. This may or may not have been fueled by calls from Alaska Family Council President Jim Minnery releasing a barrage of email blasts objecting to the proposal, clad with whatever this image is supposed to be.
But, whether or not AFC needed to invoke the spectre of Skeletor, there are questions about what road HB54 would put Alaska down.
Rep. David Eastman (R-Wasilla) asked, “if I want to commit suicide… and I receive the drugs, and I take them, and my relatives, you know, suspect there was foul play involved – suspected it wasn’t really me to do that; somewhere there was bad actors involved — what sort of written documentation would be available for them to verify that what actually happened was supposed to happen?”
“The terminal patient has to… personally request the medication on two separate occasions separated by… 15 days,” Drummond explained. “They have to request it again of their primary care physician or whoever is — whatever physician is caring for them at this end stage of their life. They have to be determined to be terminally ill, such that they would most likely be dead within six months.”
She added that there’s paperwork that would need to be filed declaring the patient requesting physician assisted suicide capable of making the decision and not being coerced. If the physician deemed them to be in a state where they may not be capable of making rational decision, they would be recommended for counseling.
“So, there are a number of safeguards that would keep – keep it between the patient and their doctor. Now, if there’s actual wrongdoing, like somebody got a hold of the medication, that would be murder. Someone who would not be authorized to using this medication. And it’s supposed to be self-administered by the patient themselves. So, if that doesn’t happen, then there’s potential for murder charges if somebody else got a hold of the medicine and shouldn’t have it,” Drummond said.
Eastman worried aloud about “some of the things going on in California and Oregon” where health insurance companies might push for assisted suicide, versus continued care and coverage, for cost saving measures.
“[T]here’s a tendancy to want to prefer a less expensive option as opposed to something that would be life saving but perhaps more expensive,” he said.
This is a valid concern. As Diane Coleman wrote for CNN in 2014,
The idea of mixing a cost-cutting “treatment” such as assisted suicide into a broken, cost-conscious health care system that’s poorly designed to meet dying patient’s needs is dangerous to the thousands of people whose health care costs the most — mainly people living with a disability, the elderly and chronically ill.
Assisted suicide drugs cost less than $300. Compare that with the cost of treating a terminal illness.
“Alaska currently has a lot of amazing and dedicated palliative care and hospice care providers in the state that work with terminally ill individuals every day,” Kranendonk responded. She noted that the State Department of HSS currently houses the Comfort One Program, established in 1996.
Your physician fills out a form for you when you have been diagnosed with a terminal disease, and they start talking about all of the things that go along with your diagnosis: treatment, end of life options, hospice, palliative care – all of that stuff is on there… State regulations contain a “do not resuscitate” protocol for physicians and other health care providers, including EMTs, to set out a standardized procedure for withholding CPR, things like that. So, any qualified patient, which all qualified patients for Comfort One would not also qualify for this legislation. But, all the ones that are qualified for this legislation would qualify for Comfort One…. So, again, they have a card with them in their wallet at all times and, under statewide protocol, CPR is not started if you’ve signed up for Comfort One.
In 1998, a bill was passed to remove, in that same program, the duty of a peace officer to respond to an expected home death. So, anyone in the Comfort One program who is in hospice or at home at the time of their death doesn’t have to go to a coroner. There’s a form already filled out and it’s on file. So, we do already have several options in place in terms of that kind of care for our patients.
“We have hundreds of communities in this state that are inaccessible by road. We have thousands of patients that aren’t always able to travel to see their doctors,” Drummond added. “I can’t imagine what it would be like and I hope none of us and nobody in my family would ever have to undergo this option.”
But, she said, the geographic reality of the state makes end of life management — and continued treatment for a terminal illness prognosis — extremely expensive. Drummond said she offered the bill as an attempt to explore options for people faced with those realities and expenses.
“I’m trying to make end of life decisions for Alaskans easier, not harder,” she said.
The committee held the bill and expect to return to it next week.
SCR2, dedicating April as Sexual Assault Awareness Month, sponsored by Sen. Kevin Meyer (R-Anchorage) and Rep. Scott Kawasaki (D-Fairbanks), was moved from the committee and now heads to the House floor.
The hearing on HB25, dealing with insurance coverage for contraceptives, was postponed until the next hearing.