Chad Blair: Aloha everybody and welcome to another installment of the Pod Squad, as always (unless Todd Simmons is sitting in for me), Chad Blair with Honolulu Civil Beat. Today a serious topic – end of life decisions, how we decide when we need to, if we need to, and how to end our lives. It’s a very serious topic and joining me to discuss that is Todd, our opinion editor.
Todd Simmons: Thank you Chad, good to be here.
Blair: And a very special guest, Barbara Coombs Lee, she is the CEO of Compassion & Choices, the largest and oldest non-profit dedicated to expanding choices at the end of life. She is a former nurse, doctor’s assistant as well as an attorney right?
Barbara Coombs Lee: I am.
Blair: Triple threat my gosh. And this is very much her life’s work.
And from Hawaii, Mary Steiner. She is the Compassion & Choices Hawaii campaign manager right?
Mary Steiner: Yes exactly, thank you.
Blair: Thank you both for being here I appreciate it.
Let’s start first of all with a little explanation. Barbara and Mary, what is medical aid in dying?
Coombs Lee: Medical aid in dying is a medical practice whereby a mentally competent terminally ill adult can ask their physician for medication they could take at a time or place of their own choosing if their dying and their suffering in their dying becomes unbearable.
Blair: Mary is there anything you’d like to add to that? You had talked earlier about let’s be careful not to use certain words because they’re loaded terms and it confuses the public, is that right?
Steiner: Yes, one of the terms that we’d really like to stay away from is “physician-assisted suicide” because we don’t look at medical aid in dying as being suicide. People don’t want to die when they’re terminally ill.
Blair: Nor are we using the phrase we used just a few years ago in Hawaii called “death with dignity,” is that correct Barbara?
Coombs Lee: Right, and I think that rightfully so, People who are not necessarily in favor of aid in dying know that there are many ways for people to have a dignified death and we want to affirm all those ways.
Blair: Barbara, I met you four years ago when you were in Honolulu, the last time the Legislature seriously took a look at doing something about this. I wrote two interviews for our website. What has changed since then nationally in terms of the landscape for allowing medical aid in dying?
Coombs Lee: There’s been enormous change in the visibility and I would say the expectation in normal people that this will be an accepted medial practice. A lot of that change came just in the past few years as a result of one person, a remarkable young woman named Brittany Maynard who was 29 years old.
She was a California resident dying of a glioblastoma brain cancer. And when she exhausted all her options for a cure and she was beginning a downhill course, she moved herself and her family to Oregon in order to qualify for Oregon’s death with dignity act. She qualified and then she turned her attention to advocacy because it was her belief that people shouldn’t have to uproot themselves, they shouldn’t have to leave their homes and the things that they loved, they shouldn’t have to go to a place like Oregon.
So she made a video and posted it online at people.com, she became a viral sensation if you will. Such a caring and charismatic person, she captured hearts and minds all over the world. Before she died she raised awareness enormously. After she died, her husband Dan Diaz and her mom decided that in her memory and for her sake, they would try and pass a law in California, and now aid in dying is an authorized practice in California.
Simmons: And in fact that passed earlier this month, making California the fifth state now to recognize medical aid in dying as a legally and completely acceptable practice.
Blair: I want to say Oregon was the first.
Simmons: Also Washington state, Vermont, Montana…
Coombs Lee: Montana by Supreme Court and California.
Simmons: So Hawaii would become the sixth in this.
You’ve been talking about laying the groundwork in this state for many years. Where do you think you are now, not only with the Legislature, but with the hearts and minds of the public?
Steiner: I think that we are closer than we’ve probably ever been before. I’m convinced that 2017 is going to be the year that the Legislature is going to pass this. We know we have public opinion on our side, we’ve had public opinion on our side since 2012, which was when we did our last polling. We will be polling again. I think we’re going to make it happen for us this year (2017).
Blair: Of course it’s not an election year, 2017, I wonder if that might help a little bit. Barbara do I understand that it’s mostly through the voters that this is happening? You mentioned the Supreme Court in Montana, is it mostly coming from legislatures and the people or is it a court issue?
Coombs Lee: It’s been a court issue in Montana. Montana Supreme Court authorized the practice. The first time, it was the citizens of Oregon (in the privacy of their kitchen table is where Oregonians vote) passed it. And then Washington state (the second state) in 2008, that was also citizens initiative. The Vermont Legislature was the first legislature to pass it, but they considered it for 10 years running before they did. California Legislature, I think was really kind of a turning point to have the legislature of the state and then the governor of the state sign it eight months after it was introduced.
Blair: You know, even though Hawaii has not yet been able to pass such legislation, we have a bit of a track record here dating back some years, isn’t that right?
Coombs Lee: The people of Hawaii have been carrying on this conversation for a long time. Ben Cayetano, in a very prescient move, named a blue ribbon panel in 1996 to look at (he called it) “living and dying in dignity.” That panel put forward 10 recommendations and nine of them have pretty much come to fruition in the state of Hawaii, the 10th was to authorize the medical practice of aid in dying.
Blair: The most important one, it sounds like.
Steiner: To us, absolutely.
Blair: Well, set the stage here, Mary and Barbara, for the campaign. What is the approach that you folks are taking to finally make it happen here?
Steiner: I think to be successful we need a multi-pronged approach. We need the grass roots, we need people to step forward and say they’re in favor, we’re looking for people with stories to step forward because we know that stories really do help, and we are looking to work with legislators to help us get this introduced and move it forward.
Blair: No names that you can leak right now just for the Pod Squad?
Steiner: I’m not going to leak names, especially in an election year.
Simmons: You know, Hawaii has a very interesting history to me on big social issues like this — of taking a while with them to sort of digest. I think of things like medical marijuana, that passed as a legal concept 15 years ago, and it took 15 more years to be able to get to a place to authorize dispensaries and legal means for people to get the medical marijuana.
Similarly marriage equality, first decision in the country was rendered here in favor of marriage equality, but it took quite some additional time before marriage equality became the law here in Hawaii. Do you see a similar trajectory in consideration of medical aid in dying?
Coombs Lee: That’s an interesting point, and you could look upon the time from Ben Cayetano’s panel to today as a period of consciousness raising. People need to hear stories, they need to feel free to tell their own stories without the sense that it’s a taboo subject, that there’s guild and shame associated with it. They need to understand that they are not alone in having stories of unnecessary agony and injustice of that. And they need to have that awareness, that “aha” moment, that “wait, this is not right, this should be better, my mom, my dad, my sister, my brother, they shouldn’t have had to suffer like that, they should have been able to exercise agency over the way that they died. I”m going to help make it different for people who will follow.”
That’s the crucial juncture that we’re at right now. I think we’ve gone through that period of consciousness raising. There’s more that has to happen, so we hope to stimulate between now and January when the Legislature meets again, stimulate a thousand kitchen table conversations.
Simmons: So it seems to me that some of the last and greatest consciousness raising or persuasion that you need to do would be among some faith communities and faith community leaders. You’re going to reopen that conversation on Tuesday with an Interfaith Alliance panel, and I wonder what your hopes are as you’re in conversation with faith leaders from around Honolulu, what do you hope to get from that relative to this effort?
Steiner: I hope to just open the conversation. I’m hoping for people to become more aware, to understand the practice of medical aid in dying and to step forward and say, “I support.” I know we’ll have some people there who will not be supportive, but we’ll have an array of people sitting on the panel that are coming at it from different places that will help to displace some myths, and we’ll have people on the panel who are not in favor of medical aid in dying, but who’ll be able to answer some of the medical issues involved.
Blair: But Mary, you know of all people that when this failed to pass through, it was the churches that were among the biggest opponents, the Roman Catholic Church, there were some of the Protestant denominations. A very profound thing for someone to wrestle with spiritually. How do you find a compromise? It’s like abortion, you’re either for or against it. It’s so loaded, how do you take that on?
Steiner: I think that in some ways quite frankly (Hawaii Family Forum is an example), we’re not going to them because they’re not going to change their opinion and we’re limited in our resources and time. I do think that there are people that don’t understand the practice and what this is about, and those are the folks that I will be reaching out to but individually and in groups.
Coombs Lee: I think one consequence might be that people of deep faith and of very serious religious belief and practice “come out” in favor of aid in dying. People can come to an understanding that just because you are deeply religious, does not mean you are opposed to medical aid in dying. There is an enormous diversity out there and as a diverse society, we need to respect everyone’s religious beliefs.
Blair: We’re not forcing someone to do this. The key word here is choice and it’s a personal choice how you want to handle the end of your life.
Coombs Lee: We’re allowing people to exercise their religious beliefs and not be constrained by the police power of state government to one set of religious beliefs.
Simmons: There may be people listening to this and it might spark them to want to learn more about this, what do you suggest for someone for whom this is a new topic, they really haven’t considered this before, is there a site that you recommend to get good unbiased information and really learn about this?
Steiner: If you go to compassionandchoiceshawaii.org, there’s plenty of information there including ways to contact me, Mary Steiner, and I can get back to you.
Blair: Barbara, final word from you, please.
Coombs Lee: I guess my final word would be that I have high hopes for the people of Hawaii. Perhaps a year from now everyone who is facing the end of their life in Hawaii will have the comfort and the peace of mind to know that they will not have to suffer unnecessarily against their will.
Blair: You know I suppose it could be a year from now, the Legislature always wraps up in May, the governor could be weighing the legislation.
Well this is really a heavy and important topic. I want to thank you Barbara Coombs Lee from Compassion & Choices for joining us, another trip to Hawaii for you.
Coombs Lee: Oh, such a burden.
Blair: And Mary Steiner with the local affiliate, and someone I work with closely at The Outdoor Circle — keeping those billboards away from Hawaii year after year, good work there.
Steiner: Always important. Thank you.
Blair: As Todd mentioned earlier, there is a talk coming up. It’s an open table discussion; “End of Life Options and Dying with Dignity: Next Steps.” It’s hosted by the Interfaith Alliance Hawaii and presented by Compassion & Choices Hawaii. That’s Tuesday night, May 17th, at 7 p.m. at First Unitarian Church of Honolulu.
I am going to plug that website one more time:
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As always, Chad Blair with Honolulu Civil Beat and the Pod Squad. Take care and aloha.