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Boulder author shares her story of helping her husband to die with dignity

Joanne Kelly wrote Walking Him Home: Helping My Husband Die with Dignity about her husband Alan who was diagnosed in 2018 with Multiple System Atrophy
Shannon Young
Joanne Kelly wrote Walking Him Home: Helping My Husband Die with Dignity about her husband Alan who was diagnosed in 2018 with Multiple System Atrophy

Colorado voters have passed a number of statewide measures that remain taboo in other parts of the country.

Perhaps the obvious example is the legalization of recreational marijuana.

But Colorado is one of only three states nationwide to have authorized Medical Aid in Dying via ballot measures.

Six other states and the District of Columbia have legalized it through legislation.

But what is the process like for families of those who want to end their lives before a natural death?

Boulder author Joanne Kelly has written Walking Him Home: Helping My Husband Die with Dignity about her husband Alan's choice to die with dignity.

SY: This book is about your personal experience, accompanying your husband in his decision to seek out medical aid in dying. Why did he choose to go this route? And what about your experience? Do you think may be valuable for others?

JK: Alan believed firmly that we treat our pets better than we treat our elders. And he said that for years, even before he was diagnosed with a fatal illness.

But he was diagnosed in 2018 with Multiple System Atrophy, which is a pretty miserable way to go. It's in the greater Parkinsonian family of illnesses, but you go downhill really, really quickly.

So he was losing capabilities. Every week he would lose another capability. He could no longer run. He could no longer ski. He could no longer dance. And then he had to use a cane and then he had to use a walker. And then he was in a wheelchair. I mean, it just went very, very quickly downhill.

So we had both read about what a death from Multiple System Atrophy looked like, and it wasn't pretty, and he didn't want to die that way.

He really wanted to stick to his guns about treating him better than we treat our pets. And so he chose to apply for medical aid in dying, and he asked for my help. And this is what you were referring to with what about my process.

So he asked for my help to help him apply for medical aid in dying and go through all the steps because it's not just a once and done process. It is quite complicated.

The medical facility that we were associated with was very helpful in helping us figure out what the steps were, but I needed to help Alan make the appointments and get to the appointments, which was difficult because getting him in and out of the car was no easy feat.

So anyway, I really struggled with the decision of whether to help him or not.

I had told him I would be there for him until the end, and I really felt that that was a commitment that I needed to keep. And so, despite the fact that I really didn't want him to die, I decided that the most loving thing I could do for him was to help him shorten his suffering. So I decided to help him die.

SY: Walk me through the terms here. What is now called medical aid in dying used to be called assisted suicide. Is there a difference?

JK: Absolutely there's a difference. The term assisted suicide is sort of old fashioned and it's mostly used by people who are not in agreement that we should have that right to die on our own terms.

Suicide and assisted suicide, (medical aid in dying) it's defined in the law as not being suicide. What's written on your death certificate is the underlying disease process. And not the fact that you use medical aid in dying to die.

But people who choose medical aid in dying have to be able to ingest the medication themselves. So they do. Nobody can force it on them. It has to be their own choice to drink the medication or to put it in their own feeding tube. Which makes the timing of when you want to choose to die difficult for people whose illness is taking away their capability. So Alan was pretty shaky.

SY: Is that also related to how this is different from euthanasia?

JK: Well, with euthanasia, somebody else either gives you an injection, usually gives you an injection, that helps you die, as opposed to the person ingesting the medication themselves.

SY: Anyone who has had to manage the aftermath of a death in the family knows the paperwork and the bureaucracy of it all can sometimes be overwhelming. Does choosing the path of medical aid in dying add a layer of difficulty to the process and, and what are the steps for going that route in Colorado?

JK: I don't think that it adds a level of complexity after the person dies. It adds a level of complexity before the person dies. And it does take a little, you have to pay attention to the rules. In Colorado, the rules are that there's a certain waiting period between your first request and your second request. And one of the requests has to be in writing and the other two can be verbal. And so it's a process.

SY: And on a closing note, is there any story in particular that you would like to share about Alan?

JK: He was a very kind and funny man. And the one thing that I would like to communicate is that I feel really blessed that I had him in my life for 25 years. He was just a lovely partner.

This story from KGNU was shared with Aspen Public Radio via Rocky Mountain Community Radio, a network of public media stations in Colorado, Wyoming, Utah and New Mexico including Aspen Public Radio.

Shannon Young is based in Boulder. She has worked in Mexico as a foreign correspondent and regularly contributed to PRX’s “The World”, Public Radio International, the Canadian Broadcasting Corporation (CBC), The Guardian, Vice News, Truthout, and the Texas Observer.