Podcast 7: A Legislative Perspective

Transcript:

[Autotranscript; may contain errors]

00:00:00
Dwight
Welcome. This is the next podcast in our series of current Perspectives in Medical Aid in Dying. I have the pleasure of talking with Debbie Armstrong, who was a legislator in New Mexico during the time that they were considering and then ultimately passed the medical aid in dying law. As a former representative, she’s kept her hand in, obviously the politics of New Mexico. There are some current, interesting developments in all of that that we may touch on as we go along. But what she’s going to be able to bring us today is a perspective on the legislative process, how you build support, and how you approach writing legislation. It will be a really wonderful insight into kind of the backroom dealings of a state legislature. Debbie, welcome.

00:00:49
Debbie
Thank you. I appreciate being here.

00:00:52
Dwight
It’s great to have you on this podcast. Would you, for our audience’s benefit, just to get to know you a little bit, tell us something about growing up and your early life?

00:01:03
Debbie
Sure. I’m from the Midwest originally and moved to New Mexico. I tell people I got here as quick as I could and plan to stay. So I’ve been in New Mexico quite a while and lived in several places. I love the big open spaces, blue sky. You have it in Arizona, too. So I do love that about New Mexico. I’m a physical therapist by training and my first career, if you will, practice for a long time, primarily in geriatrics and home health, hospice, long term care. So my interest and even when I first started, I worked with folks who were terminally ill. And so I’ve had lots of engagement with folks who are facing the end of their life. I went then to law school and focused on health policy, particularly around aging, with secretary of Aging here in New Mexico, of the aging department, and after that left and worked with an insurance program, a state legislatively created program for folks with high-risk health conditions. So still working with people who are facing chronic illness and potentially terminal illnesses. I have been at the bedside with family and friends as their end-of-life caregiver. And I have an adult daughter who was diagnosed with cancer in her teenage years, and she’s now 42, also a health lawyer. So that’s my background and my interest has been long-standing.

00:02:45
Dwight
Thank you for that introduction. As we talk today, I’d like to tease apart a number of those different steps that you talked about in terms of your own lifetime and the course of your life. If you don’t mind us doing that.

00:02:58
Debbie
Sure.

00:02:58
Dwight
A tremendous amount of exposure, obviously, to the population that we’re talking about, aging population. Gerontology in very different ways. Physical hands, literally hands on, as well as emotional support and then legal support. And that aging department was a state agency, I assume.

00:03:20
Debbie
Yes. Was a cabinet-level position for a state agency.

00:03:25
Dwight
Let me just ask a question about that. What was the mandate of that agency?

00:03:29
Debbie
The mandate of that agency was advocate for the rights of individuals, older individuals.

00:03:37
Dwight
And I assume this had to do with access to health care and…

00:03:42
Debbie
Yes, and and particularly autonomy in health care decision making and in they’re, particularly in long term care, if they’re in a facility autonomy and their decisions about how they live their life and how they make their own decisions for as long as they can.

00:04:00
Dwight
Now, that role was prior to the passage obviously last years passed medical aid in dying. Was there were there many conversations at the time about options at the end of life or was it more of care of the living and current disease states?

00:04:18
Debbie
You know, I think there was there were early conversations, yes. About end of life planning. So advanced directives and what your wishes are. I don’t remember specifically conversations about medical aid and dying. I can tell you personally, my father-in-law was storing up all his meds and had contacted the Hemlock Society. What was the Hemlock Society then? Because that’s what he wanted. He never got to do that. So on a personal note, I was well aware of and during law school, well aware of this kind of this underground movement of aid in dying for those who are who are suffering at the end of their lives.

00:05:03
Dwight
Okay, so you had some real broad exposure to this issue in lots of different steps in your life.

00:05:09
Debbie
Right.

00:05:09
Dwight
And when did you become a legislator?

00:05:13
Debbie
I became a legislator in 2014, I think. I served four terms, eight years just retired from that. I’m not retired, but I retired from my voluntary position as a state legislator. It’s an unpaid legislature in New Mexico.

00:05:31
Dwight
I didn’t know it was unpaid. I thought you got paid like $4.32 a day or something.

00:05:36
Debbie
No, (chuckles) so we did get some per diem when we had, when we were in session to cover some meals and housing and so forth. But that’s that’s it.

00:05:47
Dwight
All right. So what motivated you to become a legislator?

00:05:51
Debbie
Well, my interest as a lawyer was in statutory regulatory policy related to health care. I became engaged in politics here, starting with a political appointment as the Secretary of Aging and my very good friend that I worked with at that time and became long-term friends, is now our governor. I always worked on her campaigns and I actually took some training by an organization called Emerge that trains Democratic women to run for office. I didn’t intend to run for office. I intended to understand more the campaigning to support the representative in my area, retired and folks from Emerge called me up and asked me to run. And I did and enjoyed it thoroughly. I had been working one way or another in legislative work for 15 years before that, and would be at the legislature a lot. And so I was very familiar with what I was getting into, but I really enjoyed it. I was chair of the Health and Human Services Committee, so I had my hands on anything related to health care going through the legislature during the time that I was there.

00:07:21
Dwight
Wonderful experience. And I know our audience is looking forward to learning about that. Could you start with the legislative process? How does a bill kind of emerge and get nurtured and move through the legislature?

00:07:35
Debbie
Sure. Sometimes it starts with the legislator themselves having an interest that they come with, something that they want to do and they get a bill drafted and introduce it. Sometimes it comes from advocates or constituents that have an interest in something that they would like to see done, and they find a legislator to sponsor and get the bill drafted. And once that bill is drafted, it’s introduced, then it will go through usually at least a couple of committees, be heard in those committees, but passes out of the first committee, it’ll go to the second passes out of that, it’ll go to the floor and get voted on the floor and then it goes over to the other body so when I would introduce in the House and it would go to the Senate and then it started all over again with a couple of committee referrals, get through those committees and then go to the floor for a vote. And then it goes up to the governor who can sign it or veto it. And as you can imagine, there’s a lot that goes on during that process of trying to get your votes in committees. And amendments can happen at any stage along the way, suggested amendments or amendments that you need to do in order to get a vote for it to move forward. So there’s lots of fiddling with it, if you will, along the way. And in New Mexico, we meet every year, but we alternate between a 30 day session, which is largely budget and finance or governor initiatives. And the other year is 60 days when we can introduce anything. And it was in the 60 day sessions that I ran our End of Life Options Act. Elizabeth Whitefield, End of Life Options Act. So it took me three sessions over five years to get enough votes to get it through.

00:09:38
Dwight
So, Debbie, can you be the sponsor of that bill at the same time as you chairing the Health and Human Services Committee?

00:09:45
Debbie
Oh, yeah. There’s no prohibition of sponsoring bills. I used to sponsor 10 to 20 bills or co-sponsor in any session, and there’s no prohibition from doing it in the subject matter of the committee that you chair or sit on.

00:10:01
Dwight
So how does one nurture a fledging bill and help it grow as it goes through the steps that you’ve described?

00:10:09
Debbie
Yeah. And on things that are controversial, it frequently takes a number of attempts before you pass it. It’s really hard to do a big bill or controversial bill or brand new thing that nobody’s thought about and pass it the first time around. It takes that building of support and building of understanding. And so first time around, I feel like you’re kind of testing the water, if you will, and see where people are kind of lying and what kind of questions and issues emerge. The first time that I introduced it, there was a lot of interest, a lot of fear about what it meant and a lot of hesitation without having really thought about it and really knowing what their constituents want. So we explored lots of language tweaks and really wanted an opportunity for folks to hear it and think about it and start to talk about it.It actually got through two committees and to the floor and lost by, I think, two votes. So it started to get people’s attention. Then we came back in two years, but what we did in between, we had a campaign to build public support and so that a lot of individuals and constituents would be asking for it. We did a lot of talking to individual legislators during the interim. And it’s really stories, personal stories that make a big connection with folks. So we actually put together a booklet of little brief stories about individuals and why it was important to them that we were able to give to legislators during the session. So the second time around we lobbied legislators trying to get their vote. And we didn’t quite make it again the second time around. And then we had an election. And we had a new governor, Democratic governor, who was supportive, and we had a change of some senators who were more supportive than those who had lost. And so now we probably had the votes. The Republicans that actually ended up supporting it wanted a whole lot of amendments the first time around. But it didn’t get their vote. So we I decided, well, I’m not going to amend it in ways that that I don’t really like and compromise if it’s not going to get us anywhere with votes. So we went back and held strong to to what we had. And there were a few little amendments, but none of the major structure of the bill that we put forward changed. And we were able to just slowly, like I say, with public support and with more conversation among legislators. So they’re used to it now. They’ve heard it debated and we were able to get it through.

00:13:34
Dwight
It’s a wonderful travelogue, in a sense, about how a bill gets started and the human change process. You describe very nicely about something that’s new, probably scares and increases anxiety for people until they get used to it. And then the incredible storytelling that said, your constituents really care about this and you need to pay attention to this from a human, personal, visceral level, not necessarily a policy or political level. Where was your major source of resistance through this process?

00:14:11
Debbie
The major source of resistance was from two areas the Catholic Church and anti-abortion activists.

00:14:20
Dwight
And how did you deal with that resistance?

00:14:24
Debbie
We just plodded on, if you will. We had a lot of Catholics who were supportive and we distinguished this was different than abortion. Theindividual involved is competent, is able to make decisions for themselves, is facing a terminal illness. And it’s different than what your opposition to abortion may be. And we didn’t fight them directly. We just moved on with our own advocacy for how the protections were in us and the meaningfulness of it for persons facing the end of their life. So another area of is the disability community. But we also worked among those advocates. And so in the interim between these bills, I had a good relationship with the disability community and they ended up being what they called engaged neutral. And we made an accommodation that if there was anyone with a current or recent intellectual disability or behavioral health issuethey had to get a psychological evaluation to make sure that they were competent and fully understood what they were wanting to do. And with that, our local disability advocates were neutral on the bill and didn’t fight it, and individuals with disabilities were in support. The other area that the physician community, we had a lot of physician support, But the AMA is still on their code of ethics opposed, and we had a lot of of medical providers support. So those areas we neutralized, if you will, by working with them during the interim and with the medical society. One of the things we did was to make sure that there was at least one physician involved in deciding that someone was terminally ill and competent to do this. Because we did something different. We said that nurse practitioners and PAs could also prescribe, which that’s not done anywhere else. And so their concern was at least one physician had to affirm.

00:17:00
Dwight
And that particular feature of your bill is is a godsend. It really expands the number of providers who are willing to counsel with patients and write scripts. So does that mean that the attending physician, the prescribing physician has to be the MD or can that also be…

00:17:20
Debbie
No. And they don’t have to be present, although most in New Mexico are present at the bedside. That’s not required.

00:17:30
Dwight
I understand. Well, congratulations on that incredible effort. What advice would you give us in Arizona or in the process of doing what you’re doing, what you’ve done, particularly in terms of approaching legislators? How we how should we do that? What would you as a legislator want from your constituents?

00:17:51
Debbie
I think what I would want and what I advise almost any advocate is the stories, the personal stories make a difference on any issue. When you know how it really impacts someone personally and those compelling stories, it makes a difference. And it gets that legislators listen to that and it makes a difference to them far more than than the technical explanations from a lobbyist, for instance. So knowing their constituents want this and and what it really means. And surprisingly, when we start doing this, lots of legislators have their own personal stories related to this. And so they can relate. I do want to talk about how we came up with it, because New Mexico’s law is different than any in the country. And how I decided on doing that. We started with what’s kind of the common approach across the country, and Oregon is the longest standing. They’ve been doing it since the nineties. They’ve got the most information out there about how it works and a lot of it doesn’t work well. And we took note of that. What doesn’t work well. And I also then brought to bear what I think is important components of health care delivery, if you will, in New Mexico. And tried to marry those two. So a couple of things in particular stood out to us. One is that Oregon started the model, and I understand it. It was the first one and everyone was afraid that of a slippery slope and be really careful. And they were concerned about the legal implications. And there’s a requirement that an individual have a conversation with their doctor and ask in writing for this, and then they have to go away for two weeks and two weeks later come back and ask in writing again to affirm that they’ve really thought about it and they still want it. And then they have to get consultations from another physician. And what happens is that it takes 4 to 6 weeks to get it through the approval process so that you can actually do it. And a high number, I can’t remember a quarter or third of the people asking never live long enough to do it. And so that didn’t make any sense to me because it’s safe, there’s not been negative results, there’s not been any cases of abuse that, you know, at least that we can ascertain. And in truth, this is never a single conversation, single day decision for anyone. This is something you think about and you talk about, with your family, with your physician. And I think that those timeframes are arbitrary. And why two weeks? What is that? And that has stuck because the most comfortable thing for other states is to model it after the first state that hasn’t had any trouble with doing it that way, except that not everybody can really do it because it takes so long. So we eliminated that. The second thing that we did was, we added nurse practitioners and PAs, because the truth is, in New Mexico we’re a very rural and frontier state. Arizona is the same. And although we don’t have anywhere as large approaching as Phoenix, but you have parts of the state that are very rural and probably frontier with very little access to medical care. And in many of those communities, nurse practitioner, PAs is the only provider you may not be getting your cancer care or your specialty care from them, but it’s the provider who’s at who’s in your hometown and who knows you the best because they’re your primary care provider. And whom you might go to when you’re thinking about this. And so we thought nurse practitioners here practice independently, have for decades. Physician assistants are a hair’s breath away from being independent. And so we thought it was important for the many, many people whose primary care provider, both in rural and urban areas, is a nurse practitioner or PA that they be allowed to prescribe as well. The third thing that we did for consultation was, hospice by federal rules, you can’t be admitted to hospice without a physician affirming that you have six months or less to live. Now, that’s not perfect anywhere or for anyone, and some people live longer than that. But that’s by a reasonable course of your condition. And under reasonable judgment, you are deemed to have less than six months to live. And the vast majority of people who are on hospice come in just days or weeks ahead of their death, not six months out. So we said we use the same definition for terminal illness, six months. It’s what people are used to for determining hospice eligibility. And because you’ve had a physician affirm that you don’t have to get another physician to affirm, so you don’t have to go to a consultant physician to affirm that you’re terminally ill, that saves a huge step from having to go and find a second provider. And again, if we’re talking rural New Mexico, where they’ve had to travel hours to get to specialty care, they may have to travel hours to get to a second provider. So we eliminated that if you were on hospice. If you’re a nurse practitioner or PA who’s prescribing and you’re not on hospice, then yes, they have to go get a physician. Then we also said if you need a psychological evaluation and it’s not automatic, we start we’ve got a long history here on what we call the Uniform Health Care Decision Act that talks about end of life decision making in health care decision making. And we start from assumption of competency. And so you’re assumed competent unless there is something that is worrisome to your provider that they suspect you might not be, that you’ve got something going on. And again, we add it in automatically. If you’ve got an intellectual disability or behavioral health issue that may be impacting your decision making, you have to get a psychological referral. In many states, it has to be a psychiatrist. Well, here you’re going to wait 6 to 9 months to get into a psychiatrist. We just we don’t have good access to behavioral health services here. So we expanded the professional who can determine capacity. And it’s within their scope of practice. It’s licensed medical social workers and it’s psychologists and a variety of behavioral health professionals who that’s within their scope of practice to be able to determine somebody’s capacity. So we broaden that to make it easier to access. And then because we had eliminated the two-week waiting period, we also added just to say we had a waiting period, we added 48 hours wait between writing the prescription and filling it just 48 hours, and the provider could waive that 48 hours if they didn’t think that they would survive 48 hours. So we made those significant changes in the bill and those cornerstones of this bill made it through from the very beginning. They were not heavily debated or questioned. It made sense to people.

00:26:02
Dwight
It’s really a marvelous example of streamlining the original models that have been used and allowing them more access to the law itself for people.

00:26:12
Debbie
And as a result, I think we have a higher uptake than similar population groups, particularly in their first few years, where for a number of years they may only get 30, 50. We’ve had in a year and a half we’ve we’ve passed 200 that we know of. And it’s because they don’t have to go through a long process that I don’t think serves anyone really.

00:26:38
Dwight
Thank you for that explanation. In the remaining time, would you mind telling us the story of your daughter?

00:26:46
Debbie
Sure. She was diagnosed with thyroid cancer whwn she was 17, and when she was diagnosed, it was already metastasized to her lungs, lymph nodes and soft tissue. And she went through a few years of treatment, and surgeries. Removing what tumors they could get to and lymph nodes. And then maintained stability for almost about 18 years or so. Just by managing it with thyroid replacement. And then almost five years ago. She had developed numbness in one half of her face, and we went in to determine that she had a scan and she had a large tumor in her brain. She had a as it turns out, a genetic mutation that spurred the growth of tumors. Um, And we don’t know exactly when that started, but it was in her brain, more in her lungs and in her liver, in her bones. And she had a number of surgeries, brain surgeries, radiation and so forth, and is in a clinical trial now that is managing her tumor growth. And it seems to be stable, fortunately, for the last few years. As a result of the steroid treatment that she had to have around the brain surgery. She got a side effect of that called avascular necrosis in her shoulders and hips, where they kind of dissolved and collapsed. This last year had both shoulders and both hips replaced. But she started out advocating on behalf of others. As she has done, she advocated here in her teenage years for medical cannabis. And our law here actually is the Lynn and Aaron Compassionate Use Act. She’s Aaron. It’s named for her. So she’s started out as an advocate for patients. That was kind of her way of dealing with all of it, and then this happened to her and she experienced extreme, pain. She is well aware what it’s going to mean potentially at the end of her life. If it’s more in your bones, if it comes back to her brain, if it’s more in her lungs where she and she knows what she would be facing. She is, as I said, a health lawyer. She actually works on reproductive justice. So she is a strong, strong advocate from the time this happened to her for autonomy in health care decision making. At 17, I could make the health care decisions for her, but there’s no doubt she was in charge. She has gone against medical advice for they suggested she get a trach. She wouldn’t do it. She has been the decision maker and she wants to be the decision maker at the end of her life and knows she could be facing suffering. But she also wants to be able to surround herself when she’s lucid and in full control of her faculties. And she wants to be surrounded by her loved ones. And so she gave very powerful testimony of what it meant to her, and what she knew she would be facing and what she wanted. She wanted a peaceful death surrounded by her family when she knows there’s nothing more to be done. And she’s been on a long enough road to know when there’s nothing more, there’s going to be nothing more. I mean, she’s already on a clinical trial because there isn’t anything else.

00:30:38
Dwight
Debbie, it’s very clear how proud you are for clarity and assertiveness in this issue. I’m also aware of how helpless it must feel as a mom to really not be able to intervene and be on the ride with her, but not be able to have some major influence, particularly about the health components. Thank you so much for sharing that story with us.

00:31:02
Debbie
Yeah, thank you. Thank you for the opportunity to share it. And if she was here today, she’d share it with you herself she’s a pretty strong advocateand some that I erased! and she’s got a very positive attitude about it, about all of this. But in the early times after her brain surgery, she was in so much pain. She said, you know, I think I want to talk to is it Hemlock Society? Who is it? I want to I think I may want to do that. She said, I can’t bear it. I can’t bear it another week. We got through that, of course. And but she knows and is experienced enough to know what the end might be like.

00:31:50
Dwight
Well thank you again for sharing that story. Is there anything else that you’d like to tell our audience before we conclude today?

00:31:58
Debbie
Keep at it. And I personally think that you have a strong enough um, there’s a strong enough commitment to this and desire for this among the public that you need the public to let their legislators know. And I don’t think it has to be a political because death faces all of us. But unfortunately, it is.

00:32:30
Dwight
So it’s wonderful to see the cleanliness, the stream how streamlined the bill is in New Mexico, and I know you and the whole team worked very hard at this. Debbie Armstrong, I very much appreciate the time and energy put into this today. Thank you so much. On behalf of Arizona End of Life Options.

00:32:52
Debbie
Well, and thank you so much for the opportunity to talk to you.