Podcast 9: A Public Health Perspective

00:00:00
Dwight
Welcome. This is our next podcast in our current perspectives of medical aid in dying. And I’m quite pleased to welcome Barack Wolff today. He is instrumental and central to the recently passed New Mexico Medical Aid in Dying law in 2021. Barak is the chair of the End of Life Options New Mexico Board, and he has all through his life, been a strong public health leader in New Mexico. I think this is one advantage of speaking with him is that he really understands the ins and the outs of the legislative process in New Mexico and I suspect is quite well-known in the state. Barak, welcome.

00:00:57
Barak
Well, thanks so much, Dwight. It’s such a wonderful activity that you all are doing to inform the public about aid and dying through these kinds of podcasts. It’s really unique, and I’m honored to be on with you today.

00:01:10
Dwight
Would you give our audience a bit of background in terms of growing up, some in your early years?

00:01:17
Barak
I’d be pleased to. I went to public health school and got a master’s, and that really set the course all the way through to today. That was in medical care, administration, and organization, and my jobs flowed from that over the many years. As I got out here to New Mexico, I was working with rural health and I got to travel widely throughout the state to the very most rural areas, helping communities recruit healthcare professionals, start-up community-based clinics. It was a wonderful orientation to life in New Mexico. I had a full-on public health career that lasted until I retired in 2004. And it was at that point that started working for our state legislature, as you mentioned. And for the last 18 years, when the legislature is in session. I work as an analyst for the Senate Health and Public Affairs Committee.

00:02:12
Dwight
So that was a paid position for the governmental arm, the Public Health Commission.

00:02:19
Barak
Yeah. I work for our New Mexico Department of Health, but more recently since the official retirement, the work at the legislature is absolutely paid work. And if you recall, our legislature, Dwight is 30 days one year and then 60 days the next. So it’s really short-term work, but it connects me back to all of the good people over the years and working with rural health and public health more broadly as the Public Health division director for New Mexico. I was working at the legislature as our bill was going through it, and I was sort of behind the scenes. I wasn’t out there leading the charge, but since I’m familiar with the legislative process, I was able to be helpful from behind the curtain.

00:03:05
Dwight
Let me take you back a little bit further than that. What was your early memory of the conversation about death and dying, either in your family or in your professional career?

00:03:19
Barak
Yeah, you know, my first real experience was in the early nineties. I was working with HIV issues and got trained as a buddy, and that’s where I took my first formal training in death and dying. And it was very experiential. And I sat with people at the bedside. That was when people were still dying, you know, fairly frequently back in those days. And that’s where I think I had my first real taste, that this was work that I gravitated to.

00:03:51
Dwight
That’s an interesting period of history, isn’t it, with the AIDS epidemic, but we really got thrust into understanding the death and dying process in a way that we had not been since World War II.

00:04:04
Barak
Yeah, no, it was just stunning. I think that’s absolutely right Dwight, and young, vital people, and they were just dying hand over fist. And by the time I got involved, that was at least basic understanding, it wasn’t the mystery that it was, you know, for six or seven years before that. And for me personally, when you sit by someone’s bedside and they’re in their last bit of life, it just changes your perspective.

00:04:31
Dwight
Well, I want to congratulate you and your efforts in the state of New Mexico. The Elizabeth Whitefield medical aid in dying law passed mid-year last year, 2021. And I imagine there’s always a bit of a shock of, “Oh, my gosh, it actually passed! Now, what are we going to do?” So I want to move you forward here and talk about this implementation process, about how do we actually get this up and running in the state with docs and hospice and all that’s involved.

00:05:03
Barak
Again, exactly right, Dwight. We had worked hard in our advocacy for eight, nine years, but we had a good feeling that it was going to pass. So we actually started doing some homework on the summer before the bill passed, of convening some clinicians just start getting people familiar. But we still, once the bill was signed into law, and we still had like two months before it would go into effect, the advocates had to decide, are we really going to take this on or are we going to go to the next step as Oregon and Washington and Vermont and some of the others have, to form an organization to assist with implementation, and what would that look like? And maybe there were 20 of us that kicked that around. And ultimately it came down to, okay, if you’re willing to be on an initial board of directors, put your name in the hat. And unfortunately, there were only four of us that were willing to put our names in the hat, but that seemed like enough to get going. That ultimately pared down to three, over the next bit of time, and we moved forward feeling with the full support of the larger group that the three of us should take this on.

00:06:18
Dwight
Well, give us some of the detail about the decision-making about this implementation. Their decisions such as do we have a volunteer force, is the primary relationship between the physician and the patient, what sort of financial budget do we want and how? Give us some of the key highlights.

00:06:38
Barak
Great questions. We knew that we would have some support going into it from our national partners and state partners. Compassion and Choices had had a presence with us throughout our advocacy, and they agreed to continue with that support for a start-up period of time. Also, Debbie Armstrong, who you interviewed not too long ago, actually has a company that does back office support to nonprofits, a private company that she is the president of. And she committed some pro bono support to us for the initial period of startup. And these were folks that have experience in the nuts and bolts, if you will, of okay you’ve got to put in your form to the secretary of state, you’ve got to touch base with the AG, you’ve got to move forward towards a 501(C3), and you’ve got to have a bookkeeping system. You need a phone number and an address. And so we had that kind of support, both from in-state with people who had done similar work for non-profits advising us and making it easier for the three of us. And then we had the national support from Compassionate and Choices and ultimately from Death with Dignity as well, who had given us grants for the last couple of years of advocacy to do outreach and build our website and those kinds of things. So, you know, again, it was like drinking from a fire hose as the old saying goes in those months of April, May sort of trying to be at least positioned for the June start of our new law, and we had to decide on the basics, “Okay, what are we going to call ourselves and why, what is going to be our mission and our vision?” We need a logo. We need to give our best guess for a brochure and we need to upgrade our website. I would say that was really the first three or four months of work and the three of us spearheaded that, this small board of directors, but with lots of support from the other 20 to 30 volunteers who have been working with us fairly closely over the last five years. And, you know, as I look back at that time, by the grace of God, we made some really good decisions. You know, we liked our name and we were thoughtful about it. We evolved the logo with the help of our guy who had helped us with our website. And we built this brochure, which was aspirational, but it was with the planning that had gone on from this group of 20 to 25 people, really thinking through, looking at what the other states have done and then saying, okay, this makes sense for us. I’m very proud to say that our six-panel brochure, we’ve just printed another 10,000 of them without really making any changes. So here 18 months later, what we wrote back when our best guess at the time is really sort of what we’ve evolved into.

00:09:45
Dwight
You know, one of the things I’m learning is how surprising and complicated the startup of an organization is in itself; the nuts and bolts, how do you get things moving forward. At what point did you start to reach out to the medical communities and other key folks during the implementation process?

00:10:04
Barak
We had actually started that through a committee functioning with some clinicians and others with interest about nine months before our bill passed. We had contacts at the university at some or some of our bigger health systems, even in hospitals like in here in Santa Fe where I live, which is a Catholic hospital, we still open conversation with them so that we wouldn’t be caught off guard with their response, and they knew their responsibilities under the law to sort of opt out of participation. But, again, there was a lot of serendipity in it in terms of which clinicians then gravitated towards us with questions. Before the bill went into effect. The Medical Society agreed to put on two noontime presentations and they were attended by 100 clinicians each from around the state. We laid out our law that passed and we started talking about what the role of the docs would be in all of this and how it would happen and what the implications were and the fact that the medical society, which had been neutral, not in opposition but not in full support, they still saw the importance of giving us this platform and opportunity to speak to their members and that was very helpful. We were quite blessed to have some clinicians just gravitate to it fairly quickly and one private practice person just incorporated it into her family practice in a very public way, put it on her website and started tending to people. A bit later, we were successful in having two docs in Santa Fe do the same, and then we did a lot of the public information and outreach and discussions with the Home Health and Hospice Association. Knowing as all the laws are, that some will participate fully and some will participate in a partial way and some will opt out, and that’s all envisioned in our law. And we had to sort of figure out who was going to be what. All of this is a work in progress.

00:12:11
Dwight
What sort of successes would you say you’ve had during this implementation period?

00:14:02
Barak
Right. Because of the amount of support we got, we’ve been able in this last 18 months to really establish a firm basis for our nonprofit. You know, we’ve got our 501(C3), it took us nine months. We got insurance for our volunteers. We were able to take our existing volunteer cadre who had been advocates, but a number of them well skilled and depending on their interests, we ultimately went in two directions. One direction was with public outreach and education. Doing the presentations and doing the tabling, and the other direction was more towards the individual client support. The way Washington State and and Oregon and others have developed a cadre of volunteers who can work with people as they make their decisions and give them good information about all end of life options, including medical aid in dying, and also at times moving to be helpful at the bedside. Interestingly, the way it has evolved in New Mexico, 95% of the folks who have used aid in dying in this last 18 months have been in hospice. And that’s fairly consistent with other states. But where we’ve sort of varied has been in the commitment of the initial clinicians to also be at the bedside. And we have, as we look at our almost 200 or maybe it’s a little more now, ingestions statewide in the last 18 months, we think more than 90%, close to 95% have been tended by their prescribing clinicians. And a couple of the early users made that their practice and others then gravitated towards that. So we’ve had time then to get our volunteers trained and a little bit of experience without the demand to be at the bedside before people felt comfortable taking that on. And that’s been a real blessing.

00:14:21
Dwight
That’s quite unique in the 11 states that currently have this, to have that high 1 percentage of providers be at the bedside. That’s the flip of the norm, as you know.

00:14:34
Barak
I think it was really the first clinician who really engaged with it and made it part of her practice. Unfortunately, she’s now left the state for back east. She did a preponderance of the early ingestions, and that was her practice. That’s what she felt. She had a charged structure and made it work, but was also willing to do pro bono, etc., etc.. But she set sort of a standard. We think that’ll change in time Dwight, I don’t think it’s sustainable, particularly as we start to reach out to other parts of the state more successfully through our public information and education. And just as the law is in effect for a longer period of time and we start to fully engage with the University of New Mexico, our medical school, that has statewide tertiary responsibilities. They are now starting and it’s taken a while for them to get up to speed on it all and figure out how they were going to manage aid in dying. But they take patients from all over the state and I think as they are doing more of the prescribing, they are not going to be at the bedside and we will be called upon more to try and fill that need. And that’s just part of what we see sort of lying ahead for our organization. So we just don’t know exactly how that part is going to evolve, but we just do know about our experience to date.

00:16:02
Dwight
You’ve really done a wonderful job building a culture around this and spreading the word, obviously. What about the flip side? What kind of road bumps are challenges or are you still facing in the implementation?

00:16:15
Barak
Well, there’s lots of challenges to it all. To run a small nonprofit with a cadre of about 50 trained volunteers. It’s just an enormous effort. And you all are experiencing that enormous commitment of volunteer time in your advocacy that you’re doing and have been now for a number of years. So it’s not like you don’t know what that is, but it’s more than I would have personally anticipated. Is it a sustainable model? And ultimately, you know, it ties into a lot of the other challenges that are significant, like fundraising. Most of us have not had that experience of figuring out how do you build a donor base when there are so many competing interests that are of greater need and importance to, you know, mothers and babies and gun violence and food insecurity. I mean, the problems that our countries face that nonprofits help fill are, just extensive. And here we’re talking about having mostly older people die better and know their options and be empowered to have a good end of life. But, we’ve actually done better than we thought we would around building a donor base. I think the other thing that sort of has been difficult has been that, in sectors around health care just have so many challenges going on. I mean, a lot of the hospices have changed ownership. We have a lot of now nonprofits who get bought out by profit making and they’re based in other parts of the country and they don’t know about aid in dying, they’re sort of afraid of it. And yet local people would like to be doing it. So there are those systemic issues that keep making it more difficult to do the work than it otherwise would have been. A couple of our large health care systems. As I said, UNM, our tertiary care teaching hospital and center has been slow to develop, but now they’re really going well. Whereas one of our large private systems started out strongly with leadership, but then their providers have not really joined on very quickly and we’re still working it. We work all of these issues, but you have to have patience and some of our best functioning docs who have embraced it have left town for their own personal reasons. So just the natural give and flow of people’s lives don’t stop. And so you have to be resilient and that type of thing. The most recent one, out of the blue last Thursday, we learned of a lawsuit that a Christian medical group, I think there actually some of them out of Arizona is suing the state of New Mexico about our law, specifically looking at some of the portions of our law that speak to clinicians having to discuss end of life options with their patients, a right to know kind of approach that we put it in our law, that they have to refer if somebody is interested in aid in dying, if they’re not going to do it, they’ve got to refer somebody. And so this sort of Christian medical group is taking exception to that and has filed a lawsuit that is going to demand time and attention. And you never know how that’s going to come out in the courts. And that’s just sort of the newest and biggest challenge that we face just right at the moment that we did not anticipate. Even though we always knew there was that possibility, certainly California has been through that a couple of times.

00:19:55
Dwight
But it stretches your volunteer force already. It requires more involvement from the national organizations, I’m sure, because Compassion and Choices has a great legal team, for example.

00:20:07
Barak
Yeah. Yeah. We’re putting together a state team. We have a marvelous pro bono lawyer who joined our group. He’s based in Washington in a large law firm, but his family here in New Mexico who was involved in our advocacy, but we didn’t know that we were signing him up to really help us lead this charge. We also have wonderful lawyers who helped us pass the bill, including Debbie and Rob Schwartz. So they’ve just started to put their strategies together. And as a nonprofit, we have to figure out what role we’ll play or won’t play and how we’re going to communicate with clinicians, with the public, with our own volunteers about what this challenge represents. So I think it’s really just part of what you go through that it’s not easy, but it’s so worthwhile. And I guess that’s the third side of all of this Dwight, it just sort of the how much gratitude, how much pride we can take in being able to help folks, whether it’s aid in dying or filling out an advanced care planning form. It feels very worthwhile to our volunteers.

00:21:17
Dwight
Well, and you were part of the nineties in that the AIDS epidemic being at the bedside and currently with medical aid and dying, being able to be present with folks who make that choice and die with dignity and nobility. So it’s a wonderful gift.

00:21:31
Barak
It is. It’s a privilege and I count my blessings even though I bitch and moan sometimes about, you know, I wish it wasn’t quite so, so demanding, but, you know, meanwhile I’m getting to use the skills that I’ve honed and, you know, work with a lot of people over the years. New Mexico is a smaller state than Arizona. We get to know each other.

00:23:45
Dwight
I wanted to tap your skills in a public health segment here. I’m curious about your read of the public health implications of the medical aid in dying law. This is a radical change in the way in which we’re thinking about death and dying. So tell me about that from a public health standpoint.

00:24:15
Barak
It’s a challenge. I think public health and again, since I left it formally and it’s been a while now since I had the opportunity to be public health director here in New Mexico. It’s gone through a lot of changes, some very positive and some just very challenging. I think the pandemic and all the anger that’s been directed towards public health in my tenure, 25 years, I never experienced anything like that. None of that kind of stress directed towards us because of sort of the rules and the requirements. So I think it’s been a very tough time. But I think your question is really at the broader issues, can we think about this movement towards helping seniors and others towards the end of life, think about it more on a population basis than purely on an individual basis? There’s always value in doing individual service. There’s no question about that. But to move this into a public health arena is going to take some visionary leadership. And even though senior programs are really more geared towards food and activity and sort of well-being up to the point of serious illness and it’s part of our work is to move them into understanding that as people inevitably have challenges health-wise, that that’s another time that a public health approach can be taken to give people the information and give clinicians and our support systems the information to help people make good choices for themselves, whatever those choices are. And that’s always in another, Dwight, fundamental piece is that there are no right answers. It’s really up to each individual to decide for themselves and be empowered around their right to self-determination. That right is a public health right. There are places elsewhere in the country that I think are doing a better job than certainly our state has, and it’s something that we’ll work on moving forward.

00:25:30
Dwight
What have I not asked you? What have I missed that was important in this conversation?

00:28:16
Barak
I think you asked it, but if I have a chance to add something, one of the things that we’ve learned about is, and it’s going to be our hugest challenge, I think, moving forward is there’s this buzzword now of DEI. It’s diversity, equity and inclusion. We understood this from the beginning and inclusiveness is part of our our mission statement and our values. But, we have done well along the Rio Grande Corridor from Taos to Santa Fe to Albuquerque down to Las Cruces in reaching the clinicians and the public. But we have a large state like you do, and to get out to the rural areas and the indigenous communities and the migrant communities and Spanish-speaking communities is just a significant challenge that we aren’t yet prepared to really do well. We’re working at it, we’re committed to it, but we will not be successful until we can bring people who are different than us onto our board and into our leadership until we can have more volunteers who are Spanish-speaking and Native American speaking. I mean, we work it at the edges, but it’s an enormous challenge and it takes a lot of determination and persistence and intention, I guess, is the word to really get from where we are, which is mostly white-educated people taking advantage of aid in dying and the answers and the responses and our involvement may be different in these other communities, but we’re going to work to figure that out over time. But that’s another big challenge for us.

00:28:20
Dwight
I appreciate you saying that. I know that in the other states that I’ve had contact with, there’s a strong commitment not to repeat the healthcare disparities based on class economics, race, ethnicity. And I would agree with you that we haven’t cracked that nut yet as to how. But I’m seeing some wonderful efforts across those states in trying to remedy that.

00:28:20
Barak
I agree. I’m very impressed. I mean, I think DwD, but particularly Compassionate and Choices has really invested mightily in bringing in different voices and helping get the word out in other communities in a broad way because, at that point, it’s really less about medical aid in dying and more about quality of life at the end of life. And that’s where we want to get in serving all New Mexicans. But it’s going to take time and we’re all going to have to learn a lot to go down that road with our brothers and sisters who are already in those communities and see how we can be helpful to them.

00:30:19
Dwight
New Mexico, like Arizona, is quite unique because we have very different populations and our estimation is that on native reserves, for example, there may be 20% of people that know about medical aid and dying just in terms of information. And then there’s the whole cultural issue around that, too; is this part of who we are and who we want to be, which is a very important piece of it, not just representation on your board, but also, how do we gently and appropriately approach a culture that’s different than our own, about this opportunity, this choice?

00:30:45
Barak
Yeah, absolutely. And the reason to have a diverse board is because that’s how we can get educated and also get introductions and also have listening sessions and also begin to appreciate the realities of other cultures that what we’re working on really may be a very low interest to them. We have certainly served some traditional Hispanics and Catholic Hispanics. We’ve served some Native Americans. But in terms of making the outreach and approach, we’re going slowly. And it’s going to take a lot of intention and perhaps having a DEI coordinator who is from those communities that can help us make that entree. I’m just not sure we can do it without that.

00:30:45
Dwight
I was talking to a couple of black ministers in Philadelphia about this, and they basically said, we’re going to have a tough sell in the black community because of the religious basis of that community and they’re just not going to buy into it as simply and easily. And I don’t want to impose my wokeness on somebody else, frankly.

00:33:51
Barak
No, it’s it’s very tough. And I really commend Kim Callanan and her folks for negotiating this in really thoughtful ways and bringing folks in. No, I think it’s a very tough challenge. The guy who’s going to become, he’s a young Hispanic. It turns out that he actually had sort of Mexican upbringing. He’s now going to be the speaker of our House of Representatives, is a very progressive, thoughtful, 40-something guy. And while we were doing our advocacy, we could not get him to vote for our bill. And we actually had Dolores Huerta come and talk to him and get.

00:34:16
Dwight
You had the big guns out!

00:35:02
Barak
We had the big guns. And his point was, my father can’t access health care in our state, and now I’m going to tell him that we can help him die, when he can’t access health care? And he just he had that frame on what we were about and in spite of all that we brought to bear, he never voted with us. And you’ve got to respect that. And you hear that in different ways, in different places, that what we’re trying to do is something that some people just it’s not on their it’s not in their worldview.

00:35:52
Dwight
There’s a degree of suspicion, actually, about what this medical community is delivering to us, thank you very much.

00:35:57
Barak
Absolutely. Yes, without a doubt. So we can basically offer medications to kill himself, but we can’t help his diabetes, or whatever. So it’s you know, there’s just lots of challenges. And, you know, there’s plenty to do. But when you look at what’s going to get us to be a real statewide, effective organization, we know we need to make progress in that area. I think, you know, we’re proud of what we’ve done for the Rio Grande Corridor. Now we’ve got to move it out.

00:36:33
Dwight
Well, you’re a great role model, in a bunch of ways. I’ve had the pleasure of speaking with Barak Wolf today, the chair of the End of Life Options New Mexico Board as public health leader in the state. It’s been an absolute pleasure picking your brain.

00:36:33
Barak
My pleasure. Dwight, Good luck in your efforts.

00:36:42
Dwight
Thank you very much.

00:36:44
Barak
You bet. We’ll stay in touch.