I have lived with an amyotrophic lateral sclerosis (ALS) diagnosis for 20 years now. And in that time, I have seen so much end-of-life suffering among my PALS (people with ALS). Hundreds in my peer group have died horrible deaths from this cruel disease. That’s why I believe that adults – disabled or not – deserve to make their end-of-life decisions free from government interference and government indifference to our suffering.
My advocacy for better health care for those living with ALS has expanded to the national movement to authorize medical aid in dying – that is the ability of a terminally ill, mentally capable adult to request from a physician medication they can take, when and whether they choose, to shorten a dying process if their suffering becomes unbearable.
Living with this disease places me within a large population of people in this country who live with a disability, more than 56 million. So I express gratitude that our nation celebrates the 26th anniversary of the uniquely empowering Americans with Disabilities Act (ADA) today, July 26.
Stories can change hearts and minds
At the same time, I call upon the leaders of major disability organizations, the same people who fought for the autonomy the ADA gives our diverse disability community, to recognize that we want to be empowered in our end-of-life medical options, too. Hearing the stories of those who want – and need – end-of-life autonomy can change hearts and minds.
One of the most poignant examples of why we need better options is the case of an acquaintance of mine, an educated man with ALS who did not want to die the suffocating, paralyzing death people who have ALS are destined to die. Fearing that fate, he tried to end his life three times. Ultimately, he was transferred from his assisted living facility to a secure institution so he can be closely monitored while death slowly encroaches. This, to me, is a heartbreaking end to a life well lived.
Lawmakers in dozens of states, including Minnesota, have considered aid-in-dying laws in the past two years. Most recently, on June 9, California became the fifth state to authorize the practice, joining Montana, Oregon, Vermont and Washington. I testified in support of Minnesota’s Compassionate Care Act, which is modeled on a law in Oregon that has an 18-year record of safe practice. For failing to act to make a humane option available can have severe consequences, as my acquaintance’s experience shows.
Aid-in-dying laws have safeguards
To those who would label the option I seek “assisted suicide,” I urge you to open your mind to the view that it is not. Medical aid in dying applies to people who want more than anything to live, but a deadly disease is ending their lives. And some responsible people want to make a responsible decision with the aid of their physician to reduce their suffering as they leave this world. The safeguards in aid-in-dying laws ensure that only those who qualify can access the medication and that vulnerable people are protected.
I know too many PALS who have suffered an excruciating death at the hands of ALS. Literally, I have known hundreds in the course of my decades of work advocating for the ALS community. For them, and for the thousands I will never know, and, possibly, for myself I advocate for Minnesota’s Compassionate Care Act. It is good law, and good policy, and I urge all Minnesotans to join me in campaigning for better end-of-life options.
Bobbi Jacobsen lives in Richfield.
WANT TO ADD YOUR VOICE?
If you’re interested in joining the discussion, add your voice to the Comment section below — or consider writing a letter or a longer-form Community Voices commentary. (For more information about Community Voices, email Susan Albright at salbright@minnpost.com.)
Loopholes eviscerate promoted safeguards
Correction please:
Your source has done you a disservice. The promoters of assisted suicide have worn out their thesaurus attempting to imply that it is legal in Montana. Assisted suicide is a homicide in Montana. Our MT Supreme Court did ruled that if a doctor is charged with a homicide they might have a potential defense based on consent. They acknowledged it is a homicide in the ruling.
The Court did not address civil liabilities and they vacated the lower court’s claim that it was a constitutional right. Unlike Oregon no one in Montana has immunity from civil or criminal prosecution and investigations are not prohibited like Oregon. Does that sound legal to you?
Perhaps the promotors are frustrated that even though they were the largest lobbying spender in Montana their Oregon model legalizing assisted suicide bills have been rejected in Montana in 2011, 2013 and 2015.
Your source has done the public a disservice. Their ordinary bait and switch campaign is demonstrated by their selling “must self-administer” then they do not provide in their legislation for an ordinary witness of the “self-administration”. This omission eviscerates the flaunted safeguards putting the entire population at risk of exploitation.
Respectfully submitted,
Bradley Williams
President
Mtaas dot org
The Baxter decision
With all due respect to Mr. Williams, I read the Baxter decision as holding that Montana law permits doctor-aided death at the request of the patient. I quote from the opinion of four justices, based on their reading of Montana statutes:
“[T]he legislature—as illustrated in the Terminally Ill Act analysis above—has carefully cultivated a statutory scheme that gives terminally ill Montanans the right to autonomously choose what happens to them at the end of painful terminal illness.”
https://filenet.mt.gov/getContent?vsId={88A87FE0-2501-438A-AC31-CCE62D37C894}&impersonate=true&objectType=document&objectStoreName=PROD%20OBJECT%20STORE
A fifth justice concurred with that analysis but went on to state that he would recognize a constitutional right. One justice dissented.
Nope
It is you who have done a disservice by misrepresenting the law.
The Wikipedia article has a pretty good summary for those interested in what actually happened.
https://en.m.wikipedia.org/wiki/Baxter_v._Montana
ABSOLUTELY Should
Death is the most private decision anyone can make, with or without support. Can we please consider this topic to be one of personal/family planning, like so many other considerations?
Suicide: The crime we punish in advance.
It is past time
I am a middle aged man. In June of this year, I was found to have an adenocarcinoma in my left lung. Fortunately for me, it was a single tumor. The lower lobe of my left lung was removed 5 weeks ago. There is no sign of cancer to be found, though I will be followed carefully for the development of any additional tumors.
I have participated in hospice care for three family members, my parents and a younger brother. One died of emphysema, one as a result of an inoperable abdominal aneurysm, and one from lung cancer.
Emphysema kills by prolonged suffocation. The ruptured alveoli of the lungs expand to the point at which the lungs can no longer function. I sat with my father for many a night as he struggled to obtain air that his body could not inhale or process. Palliative care consisted of morphine, administered by placing drops under his tongue. He may not have felt pain but his body was in a constant state of what can only be called panic.
My mother had chosen to issue an order prohibiting nutrition or hydration should she become terminally ill. That was done.
My brother’s death from lung cancer mirrored my father’s in many ways, including the destruction of his ability to breathe and the morphine-coated panic.
When I was diagnosed less than two months ago, I gave great thought to how I wished to end my life. I did not want to follow the course I’ve described. I was prepared to end my life at a time of my choosing. The only question was how that would be accomplished with the least anguish for my family. Luckily, that was not necessary. Should it become so, I would greatly prefer to be able to obtain the necessary materials from a doctor and to die surrounded by my family. If it is not, I will resort to other means.
Thank You for this testimony.
Such realistic, intellectual determination should not be forced toward “other means.”
Experiences
I think if people lived through your family’s experiences firsthand, this wouldn’t be an issue.
I hope that it’s many, many years before you have to make a decision like this for yourself. Be well.
Way Past Time
Thank-you for advocacy on this issue.
Often it takes facing it oneself to understand. I see a lot of lack of ability to empathize so watching someone die this way does not always register with others.