End-of-Life Choice, Palliative Care and Counseling

A Conversation About Aid In Dying In Hawaiiby Jay

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By Chad Blair
Honolulu Civil Beat
February 27, 2012

Every few years the Hawaii Legislature considers — and invariably rejects — legislation establishing physician-assisted suicide, also know as “death with dignity.”

The measures have primarily been opposed by religious groups, particularly the Catholic Church.

But Hawaii’s population is aging, and growing in size. The tremendous challenge of dealing with an ailing loved one was tragically illustrated just last week in the murder-suicide of an elderly Hawaii couple.

A group called Compassion & Choices is taking a different approach to end-of-life decisions, one that could bypass the legislative process but does involve the courts and the state and federal governments. The “aid-in-dying movement,” also called “choice in dying,” seeks to transform medical practices regarding end-of-life issues.

Barbara Coombs Lee is president of Compassion & Choices, which has its primary offices in Portland, Ore., Denver, Colo., and Washington, D.C. It also has regional offices in other states, including Hawaii.

Civil Beat spoke with Coombs Lee, 64, on Friday, when she was completing a series of public forums in the islands to talk about Oregon’s 14-year history with a Death with Dignity law, and holding an end-of-life choice seminar.

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Civil Beat: You participated in public forums on “aid in dying” this week on Oahu, Maui and the Big Island. How did they go?

Barbara Coombs Lee: Really well. Standing-room only. There is an enormous amount of hunger and enthusiasm. They read something in the paper — “Oh, someone’s going to talk about choice at the end of life” — and there’s kind of a pent-up demand to talk about it. There’s still this element that it’s just taboo. And so the opportunity to be among people where they can speak freely about their hopes, their desires, their stories — everyone has a story, hopefully of fulfilled wishes, a good death.

But unfortunately so many people have stories of “my dad, my brother, my mom, they suffered horribly in their dying. And I was witness to that. I felt so guilty that I wasn’t able to ameliorate their suffering in some way.” Or, sometimes worse, “They pleaded with me to help them. I wasn’t able to help them. I feared for my own freedom, for my own safety from legal repercussions. And I feel as though I abandoned my mom, my dad.”

We hear that so much. And these are people with young families. There’s often this push-pull. “Do I honor the wishes of my mom, my dad, and risk having to abandon my family?” They are sort of caught between the older generation and the younger generation.

Did you hear any opposition — people who showed up and said, “Well, this is against my faith,” or “We should honor life”?

We think there were probably opponents in the audience, but they were there as observers. They weren’t there to discuss their beliefs. They certainly didn’t make their beliefs known. There were no pickets, no signs, no protests of any kind.

Tell me about Hawaii’s 1909 law, the one that our attorney general has recently said no longer has standing.

We think that the right to self-determination and autonomy at the end of life doesn’t rest on that law alone. That law is one of a constellation of laws in Hawaii that have always favored personal choice and autonomy and have always given great latitude to patients facing the end of life to ask for the most effective relief from pain and suffering that is available, that has encouraged them to state their wishes and make sure that those wishes can be granted.

In the case of the 1909 law, that law’s contribution to the constellation is that people who are hopelessly and incurably ill — I think those are the words — have a kind of special status, and they are eligible to ask for any remedial agent, anything that they would see as a remedy in their condition, and that there can be no legal repercussions.

What did the AG opine?

The AG opined that the statute against causing a suicide essentially trumps all that. Our view is that the AG looked at that very narrowly. In the scope of the legal landscape in Hawaii he focused very narrowly on this law and ignored all the other autonomy-promoting laws. And then he overreached in how far he believes the law would go to define what it is to cause a suicide. To us, criminal causation is very narrow, and you have to be pretty aggressive and pretty determinative in someone’s behavior to meet that definition of causing.

We don’t think the rational decision of a dying person to find a peaceful end is a suicide. We don’t think that’s suicidal thinking or suicidal ideations or suicidal behavior. We think that’s a rational assessment of the conditions of the quality of my life and the severity of my suffering and a rational choice for the least-worst experience for me, and the kindest experience for the loved ones I leave behind. It is also a decision that will enable me to die at home, which is where nine out of 10 Americans say they want to die.

But that doesn’t necessarily happen, does it?

It practically never happens. It is the rarity. People will say, “I want to be in bed, I want to be home, I want my loved ones to me holding me.” People don’t want the kind of impersonal, technologically oriented, isolating, intensive-care-unit kinds of experiences that unfortunately the vast majority of people experience at the end of life.

What about a hospice?

People enrolled in a hospice can die at home, yes, and we consider that the gold standard of end-of-life care. And we would never recommend aid in dying unless they are already availing themselves of the very best that end-of-life care has to offer. But the fact of the matter is that even in hospice people can get stuck in a prolonged and agonizing dying process. It may very well be that it comes to a choice between relief of my agony and a state of unconsciousness and/or delirium versus unrelieved agony and a continued ability to tell my husband I love him and visit my grandchildren and all of the things that might be the most important at the end of life.

So, sometimes people even in hospice, even with the best of care, that care cannot address what people see as unbearable suffering. And for those people to have a peaceful way out is very important, plus — and this is a very important point and another point that kind of goes to why that law against causing a suicide doesn’t apply — the purpose of providing a prescription for life-ending medication is not to cause the patient’s death. It’s to give the patient peace of mind, to comfort them, to provide what patients call “my insurance policy, my safety hatch, my parachute, my safety blanket — the key to the door I am locked in.”

And Dr. (Robert) Nathanson here has said, and I have seen him do it, when he hands someone a prescription for potentially life-ending medication, he always says to them, “You know, I hope you never have to use it. I hope it sits on your shelf. I hope that you are able to have an experience with minimal suffering and you never find a need to use it.”

The purpose is not to cause a death — the purpose is certainly not to cause a suicide, because these people aren’t suicidal. All that kind of goes into — they are all components — of our legal reasoning about why this law against causing suicide really doesn’t apply. This end-of-life treatment is really for the purpose of comforting them, for improving the quality of their lives.