End-of-Life Choice, Palliative Care and Counseling

Posts TaggedDustin Hankinson

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.