End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedDustin Hankinson

Missoulian Publishes Op-Ed by C&C Advocates With Disabilities to Honor ADA Anniversary

By Sean Crowley

“Like others, we want the freedom to enjoy life. This freedom should include the full range of options at the end of life, including hospice, palliative care and aid in dying.”

Those are the opening words of an op-ed published today in the Missoulian [Montana] newspaper authored by two Compassion & Choices volunteer advocates to commemorate tomorrow’s 24th anniversary of the 1990 Americans With Disabilities Act.

The authors — Dustin Hankinson from Missoula, Montana, and Sara Myers, who lives in New York City and Connecticut — wrote about why they join famed physicist, best-selling author and U.S. Presidential Medal of Freedom winner Stephen Hawking in supporting death with dignity: because it ensures autonomy and expanded options at the end of life, just as the ADA does throughout life.

They cite a report published in the Journal of Medical Ethics about the Oregon Death With Dignity Act. It concluded: “Rates of assisted dying in Oregon showed no evidence of heightened risk for … the physically disabled or chronically ill.”

Recent data shows a strong majority of voters living with disabilities support death with dignity in states where it has been polled: Connecticut (65 percent), Massachusetts (74 percent) and New Jersey (63 percent); support levels nearly identical to all voters in these three states (Connecticut: 66 percent, Massachusetts: 71 percent, New Jersey: 62 percent).

The op-ed concludes:

“‘If you have a terminal illness, and are in great pain, I think you should have the right to end your life … It is discrimination against the disabled to deny them the right… that able-bodied people have … We should not take away the freedom of the individual to choose to die. I believe one should have control of one’s life, including its ending.’”

You can read the complete op-ed by clicking here.

A Letter From Disabilities Advocate Dustin Hankinson on the Anniversary of the ADA

Hello Friends,

I’m a Montanan living with a disability. And I strongly support end-of-life choice. To me, the right to die with dignity is as important as the right to live with dignity.

That’s why I agreed to be interviewed by Compassion & Choices for this video. It’s just three-and-a half minutes long, yet speaks volumes about respecting the rights of people with disabilities to make our own end-of-life decisions, just as other Americans can do in five states and counting.

If you believe that all adults should be free to make their own end-of-life decisions, regardless of whether they live with disabilities, sign the petition.

At three-years-old, I was diagnosed with a genetic disease called Duchenne muscular dystrophy. In 2004 my diaphragm became too weak for me to breathe on my own and I began using a ventilator. At some point in the years ahead, my cardiac (heart) muscles will become too weak to support my body. When that happens, I believe I should be the one who decides my ultimate fate.

That’s why I will celebrate the upcoming anniversary of the 1990 Americans with Disabilities Act (ADA), and will do so as a fervent supporter of Compassion & Choices. So should you!

This Saturday, July 26, marks 24 years since this landmark law guaranteed me and every American with a disability the right to live autonomously and independently.

Its impact is a lot bigger than the wheelchair ramps that now make it so easy for me and others to maneuver on streets and board buses. It integrates us into the fabric of life and living that most people can take for granted. 

Just as the ADA preserves our dignity, so do laws that guarantee end-of-life choice in New Mexico, Oregon, Vermont, Washington and my beloved home state of Montana. More

YouTube Video by End-of-Life Choice Group Honors Anniversary of Americans for Disabilities Act

Video Pays Tribute to Connecticut & Montana Volunteers with Disabilities Who Advocate for Death-with-Dignity Laws

Compassion & Choices is commemorating this week’s 24th anniversary of the 1990 Americans with Disabilities Act on Saturday, July 26,by releasing a video today saluting our volunteers living with disabilities. The video is available for viewing on Compassion & Choices’ website, http://bit.ly/CandCCelebratesADA, and Compassion & Choices’ YouTube channel: http://bit.ly/ADACelebration.

“Compassion & Choices shares the goal of Americans with Disabilities Act of increasing autonomy and expanding options for all people,” said Compassion & Choices President Barbara Coombs Lee, an attorney who was an ER and ICU nurse and physician assistant for 25 years. “We honor this historic law by saluting our Compassion & Choices volunteers living with disabilities. They are among our strongest advocates for autonomy and expanded choice at the end of life for all people.”

The video features interviews with two Compassion & Choices volunteers who support the end-of-life choice of death with dignity.

1)     Dustin Hankinson who has Duchenne muscular dystrophy and lives in Missoula, Montana. He has worked tirelessly to preserve access to death with dignity in Montana, one of five states that allow mentally competent, terminally ill adults the choice to access aid in dying.

2)     ALS patient Sara Myers, who lives in New York City and Kent, Connecticut. She has diligently advocated for passage of aid-in-dying legislation in the nutmeg state. More

Dignified Dying

Guest Essay
by Dustin Hankinson

Disability Rights Advocate Dustin Hankinson
Disability Rights Advocate Dustin Hankinson
The recent essay “Only Dignified When Dead?” by Stephen Mikochick of the Ave Maria School of Law makes a number of false claims and inaccurate assessments about aid in dying that I, an American living with a disability and supporter of Death with Dignity, take issue with.

Mikochick refers to the recent statement by the U.S. Catholic bishops opposing end-of-life choice in his assertion that it hinders patient autonomy, threatens disabled people and vulnerable populations such as the chronically or mentally ill, and carries the risk of involuntary administration.

This view contradicts the support of most Catholics and Americans for patients’ rights at the end of life, and the rationale is flawed.

The Death with Dignity law sets out a detailed process under which only terminally ill patients, meaning those with a diagnosis of less than six months to live, qualify. Furthermore, those individuals must be deemed mentally and psychologically competent by two separate physicians.

There is no room for error or slope-slipping, as it is the patient who has to pursue this option for themselves.

No one is forced to die, just as no one should be forced to stay alive longer than their body is able and their mind is willing.

I support the right of terminally ill adults — of any religion or no religion at all — to make their own end-of-life decisions.

It’s one thing to state your position based on religious beliefs, but quite another to falsify facts and impose those beliefs on every adult in the country.

We all deserve the autonomous decision to live a comfortable, dignified life right up until the end, whenever that may be for each of us. Artificially eating, artificially breathing, and enduring other painful and futile procedures to extend a terminal existence will not bring us closer to God; only living as compassionate, caring people can do that.

Hankinson has been a disability-rights advocate for over a decade. He has lived with Duchenne muscular dystrophy for 36 years.

My Right to Choose

By Dustin Hankison. Dustin is a community activist who lives in Missoula, Montana.

Montana has become the latest battleground of a somewhat revolutionary cultural shift. Our state is deciding whether to extend to our citizens the right and personal choice to, under the circumstances of having a competent mind and a terminal illness, end their life in a planned process at a time of their choosing.

I am a Montanan living with a disability, and I support the right of terminally ill Montanans to make their own end-of-life decisions.

To be clear: under the law, a “terminal condition” is:

an incurable or irreversible condition that, without the administration of life-sustaining treatment, will, in the opinion of the attending physician or attending advanced practice registered nurse, result in death within a relatively short time.

These are my end-of-life choices under consideration. I believe that it should be up to me, not anyone else, to make the decision about how my life ends.

I know the gravity of the issue at heart here. Life and death aren’t trite, abstract political concepts. “Aid in dying” is NOT policy banter. This topic has particular relevance to me because I am living with the terminal illness of Duchenne Muscular Dystrophy (DMD). At some point in the future, DMD will cause my death via cardiac muscle weakness.

As an advocate for the rights and lives of people with disabilities, I look at aid in dying not simply through the lens of what this means to me. I’m compelled to take into account what instituting aid in dying means to the Montana disability community.

I’m also a son, nephew, brother, grandson, cousin and friend to the people of Montana. What would aid in dying mean to them? The question becomes more complex when considering all the people it would affect.

It comes down to personal beliefs, personal perspectives and personal values.

I believe that people who are competent and terminally ill have the absolute, sovereign choice to end their lives when they want by the self-administration of a life-ending medication prescribed by their doctor. I support the Baxter decision and efforts to make it viable. We can honor the choice of the patient and be protective of ALL vulnerable populations. This is not beyond our scope, as the data from Oregon and Washington indicate. Wisdom must be our guide and compassion must be our goal.

I love my life and I want to live it as fully and as long as I am able. But when I know the end of my life is near, I want to be the one who decides my fate.

Many studies have concluded that there has not been a single person living with a disability who has even used the law, much less been pressured to do so. I’d like you to take the time to watch this video of Oregonians with disabilities talking about their view of the Death with Dignity law:

Concern about my vulnerability should not be used to deprive others of their end-of-life rights.