As a long-time journalist, my training taught me to not interject myself in the news, in advocacy, in expressing opinions — because it impacts my legitimacy as an impartial observer who seeks and shares but does not shape information.
Of course, that sense of impartiality in media has been eradicated in recent years with the obsession on so many cable channels with pundits lined up merely to argue their points without listening to others.
I also increasingly see the wisdom, in this era of social media sharing, to support the insights of those who know what they are talking about and who can explain it.
I have been a writer for more than 40 years, and trust my thoughts more now than I did in my teens and 20s, and 30s, and 40s. Now that I am in my 50s, I feel more obligated to share my opinion about certain things that I have personal experience with.
That is why I am publicly supporting the medical aid in dying (MAID) legislation that is being introduced this week in the Minnesota legislature by long-time advocates Sen. Chris Eaton (Brooklyn Center) and Rep. Mike Frieberg (Golden Valley).
My father suffered from dementia for the last few years of his life, and was in great discomfort from congestive heart failure for the last few months. My mother pushed for hospice care, to try to enable greater pain medication to him as he struggled to breathe. He was in hospice care at the Veteran’s Home for the last week of his six-month stay there before he died in the afternoon on March 4, 2020.
What I am grateful for:
- My mother, who worked with veterans for most of her career as a gerontological nurse, was able to be with him consistently, including the last three days of his life — although he died a few hours after she had gone home at 7am to rest;
- My brother, who had been estranged from the family for many years, had brought his own family back into the fold for a visit with our dad shortly before he died, after I showed up at his doorstep unannounced and told him that dad’s life was somewhere near its end;
- My beloved and no-nonsense father, who paid better attention to time than the rest of us, blessedly passed away a week before the pandemic lockdown. He hated being there without family and it would have been unbearable to not see him — a fate I know has tormented so many families.
Here is what I wish had been different in his dying and his death:
- Dad’s mother had died alone in an institution when he was 10. In that time, the wisdom was that he and his sister should be brought in to say goodbye, and then leave. Through his life, when my dad had bad dreams, I noticed they tended to be about being abandoned and lost, away from people who cared about him.
- When my mother got the call from Vet’s Home to indicate he seemed to be final stages, she called me. I was able to leave the office immediately, scoop up my 16-year-old son from school, call my daughter at her college in California, call my brother, and head to the Vet’s Home. However, within 20 minutes of having gotten the call, my dad died. None of us were there.
- Because I was suffering from a cold, the last time I visited dad I kept my distance. I was not there those last few days when mom was. Had I known he was going to die — only a week after I was at his first (and only) hospice conversation, where he joked with the team assigned to his care — I would have at least hugged him goodbye despite my cold germs.
Of course, people do unexpectedly die, without loved ones around them, all the time. Many times we do not have time to prepare for sudden loss. Sometimes — and I am sure my dad was one of them — we do not want to be encircled by ritual in the deeply intimate moment of dying.
But, given the choice… how would we opt to die? Shouldn’t we be able to make that choice when we know our end is coming within six months?
That is what medical aid in dying legislation is about: Six months. Terminal illness. A doctor’s insights. Self-medicated. With loved ones around us if that is what we choose.
I know that dementia would have limited by father’s qualification for the option, per the legislation that is being considered now in Minnesota. If a doctor cannot put a window of time on death, and if a patient cannot clearly make a choice, it cannot be legally sanctioned.
He was often cogent, however. And the congestive heart failure at the end increased his suffering tremendously.
I also know that, in states where this legislation has passed, many people opt to have the medication, but opt not to take it. It is about having the choice.
I suspect that many of us know people who opted for more difficult ways to leave when facing a terminal illness.
A year before he died, when dad was still living at home, I was talking to my parents about the Compassion & Choices movement I was learning about — explaining what the legislation is and is not able to do for people closest to death. My dad, in his soft-spoken way, simply said, in a moment not clouded by dementia: “I would like to have that choice.”
Six months later, when I was sitting in a sun-filled lobby space with my dad at the Vet’s Home, he told me he was afraid. He said he did not want to die “in this place.” I told him that if we thought he was dying, we could bring him home to die.
It made him feel better. It was also, ultimately, a lie. His medical needs meant that he needed the round-the-clock care he got at the Vet’s Home. My mother, also in her 80s, needed time not dealing with him wandering out of their downtown condo in the middle of the night, replacing bathroom walls after water was left running, consistently being the one to change his diapers.
In the ideal world, Minnesota’s laws would enable our dying to go home with a plan for the inevitability of their own death.
“While palliative care and hospice programs provide great comfort to patients and work wonders for many dying people and their loved ones, there are times when even the best palliative options cannot alleviate pain and suffering. This legislation offers the dying person a choice to decide whether their pain and suffering is too great to withstand the pain.”
minnesota senator chris eaton
If medical-aid-in-dying legislation passed in Minnesota, the rules would be that the individual must:
- Be an adult
- Be a Minnesota resident
- Have a diagnosis from his/her primary physician of incurable and irreversible disease which will, within reasonable medical judgement, result in death within six months.
- Be able to make medical decisions for themselves as determined by health professionals
- Voluntarily request a prescription for an aid in dying drug without influence from others
- Be able to self-administer (eat, drink, and swallow) the aid in dying drug.
The legislation has been proposed in Minnesota for many years. Even though polls suggest that Minnesotans strongly favor the choice, there is an organized group that tends to keep it from moving forward, largely for religious reasons.
Compassion & Choices Resources
“My End of Life” Advance Planning Guide
Free COVID-19 toolkit for the Finish Strong program, in English and Spanish, that addresses questions facing terminal illness and information about COVID-related advance directives and planning guide
Expanded telehealth capabilities
Public education campaigns for Black and Latino populations
Enhanced dementia healthcare directives
22 states have advanced end-of-life options in legislative bodies, with 342 lawmakers as cosponsors
Medical-aid-in-dying legislation has passed in Oregon (1994, ballot initiative), Washington (2008, ballot initiative), Montana (2009, state Supreme Court decision), Vermont (2013, legislation), California (2015, legislation), Colorado (2016, ballot initiative), Washington, D.C. (2017, legislation), Hawai’i (2018, legislation), New Jersey (2019, legislation) and Maine (2019, legislation). New Mexico recently moved the conversation to the Senate for the first time after the House approved it with a 39-27 vote.
