Podcast 6: A Patient Perspective

Transcript:

[Autotranscript; may contain errors]

Dwight:
Welcome. This is the next in our series of podcasts for Current Perspectives of Medical Aid in Dying. It’s my pleasure today to introduce Erica Gergerich, who is got a long list of introduction. She’s a PhD, also licensed clinical social worker on the faculty of New Mexico State University School of Social Work, and is an expert in the New Mexico process. I believe she testified during the hearings of the passing of the New Mexico law. Erika, welcome to our podcast.

Erika:
Hi, thank you.

Dwight:
It’s a pleasure to have you here. Our audience likes to get to know folks on the podcast. So if you could give us a little bit about your background and growing up, I would appreciate starting there.

Erika:
Sure. I was born in Lansing, Michigan, but my parents swooped me down to Arkansas very quickly as my mom took a position at the University of Arkansas and she studies plant pathology. Or studied; she’s retired now. My dad was animal science, which is very different from my professional trajectory. But I had two academics and grew up in that kind of a household. My dad actually stayed home with me, so he was a stay-at-home dad. My dad said she was the better scientist of the two of them, and so he stayed at home. I’m not sure if it was due to that, but yeah, and we had a pretty unique upbringing I’d say. We didn’t really have a car for the first many years of my life and didn’t have a TV until much, much later. So a lot of time spent outside or walking around to the library. A lot of great neighborhood friends. So fairly peaceful upbringing in Arkansas. Fayetteville Yeah, Yeah. Beautiful place.

Dwight:
So you said that your trajectory from a career standpoint was a bit different. I mean, you’re obviously your doctorate. There’s three doctors in your family, if I’m counting correctly, at least. But how did you start to get interested in social work and in gerontology?

Erika:
Yeah. So I went to get my bachelor’s degree at Hendrix College and ended up finding sociology to be the most interesting to me. And I actually graduated nine months pregnant with my daughter. And so after she was born, I worked as a certified nurse’s aide in home care and assisted living. And eventually I looked online. I was like, what kind of career can I have where I work with older adults? And I looked at social work and even wasn’t certain all the way through my program if that was what I wanted to do. But I did get the ability to work in hospice and with a senior health clinic in my internships and was still very certain that I wanted to work with older adults and very excited to have those opportunities. So that’s how I launched into working with older adults. After working as a CNA, I was sure that was my happy spot.

Dwight:
So Erika, what is it about working with older adults that attracts you?

Erika:
I found that it was a slower pace. I know that health care can be very, very fast-paced, but I don’t know if it’s because Medicare reimburses for longer visits or what the case is that I was able to do my job without this breakneck pace. That can often be the reality of hospitals or nursing homes. So in a senior health clinic that worked primarily with people 65 and older, there was also a movement disorders clinic and a memory center. I worked there for three or four years, and also hospice had that same sort of slower pace and home visits and just very intimate care. So social work, our part was to really get to know the whole person and share the pertinent bits with the providers so that they had a clearer picture of the patient. And I really liked that. I really just felt connected with the older adult population.

Dwight:
I like your word “intimate.” The idea of having a conversation and really taking some time to unfold and there’s a tempo to it. With the elderly population it’s very different than a hospital-based conversation which is clipped. There’s another five patients waiting to be taken care of. The pace of movement of senior citizens is slower. So I understand what you’re saying in terms of pace there.

Erika:
Yeah. And for whatever reason, I think that insurance Medicare has enabled that. And I think that other people, other populations would certainly benefit from it. But that ability certainly allows for better care.

Dwight:
So along the way, tell us a little bit about your early experiences with death and dying.

Erika:
Sure. So when I worked at the clinic, I visited a woman in her home and she had Huntington’s disease. She was bedbound and writhing. Just constant writhing, constant movement and couldn’t communicate, couldn’t do anything for herself. And the day that I was there, she was discharged from hospice because she was going to have more than six months to live. And that was just shocking to me because she obviously needed intensive in-home care. And that’s what hospice can offer, but only if people have less than six months to live. And so it was really just kind of, oh, heavy. What can we do to maintain or continue support for this woman because she’s not going to die soon. Made me think of ethics and dying and living and aging. And then, of course, there were people the social workers were there in a number of capacities, but the doctors would often pull us for things like a person learning that they need hospice care, right? So they get a diagnosis of six months or less to live. Okay, you’re dying. And then the doctor has to go on and see the next patient and kind of keep that momentum. But it feels awful. I remember for them to just leave the room without, you know, sitting with them and letting them process, ask questions and such. So that’s when we would come in oftentimes. And I will say, I do have one more story related to that, just one particular doctor who at least twice had me go in and told me outside of the room, okay, this patient is going to be on hospice now. And I would go in and apparently that had not been communicated to the patient. So it would sometimes even fall on us to have those conversations and explain what hospice is and sit with the family as they sort of take in the reality that their life is ending.

Dwight:
Your conversations with the elderly when they’ve just received a six-month terminal diagnosis, which is similar to the same thing as admission to hospice, how would you describe the typical reaction of the patient to that news?

Erika:
Well, that would vary quite a bit. It just depended on their situation. Some of them knew and were prepared. Some of them might have been even relieved. We worked a lot with caregivers in that clinic and supporting people during that time and after their loved one died. We had support groups that we ran. So it varied. I can speak from my own experience. I’ve had my own healthcare journey and it’s shocking. I mean, the first time you get that information, it doesn’t sink in. It doesn’t; it takes days, weeks, months to really understand every layer of that reality, I think.

Dwight:
Would you be willing to share that journey with the audience?

Erika:
Absolutely. So in 2018, I was eight and a half months pregnant with my son. And my mom; I also have a mom who’s been through cancer three times, breast cancer twice, melanoma once. So it wasn’t a surprise to me when I had a lump in my breast. And not just that, but I had had literally maybe eight benign tumors removed from my breasts over the years. Just because I’d always get worried, right? Because my mom’s history. But this one wasn’t benign, and I just thought it was breast changes due to pregnancy because that happens. But I went in and had them check it and so it turned out that it had spread, and they induced my labor two days after that so that I could give birth to my son. So at least it was to a point where I could safely give birth to him. But after that, they found out that it had traveled to my bones, which is not good. But if it’s going to travel anywhere, bones are not soft tissue is what I was told. So we had some hope. Started chemo. And so they tried this chemo, tried that, and it would put it at base some, but then it would come back or I would become resistant to the kind of chemo where the cancer would.

Erika:
And then they found it in my liver, one of the scans. And that’s when we knew it was getting bad. And it started moving really quickly, really fast. And I was having a great deal of pain, having trouble walking. And we decided to move back to Arkansas. At the time, I was in New Mexico working as an assistant professor for New Mexico State, still working there just at a distance. But we went back to Arkansas with the reality that my treatment wasn’t working and began visiting with hospice, who I knew all the social workers in Arkansas where I’d practiced. And I even knew the young woman who came to visit me in my home. Yeah, there’s nothing like facing that. And I’m very lucky to be able to say that I had a mastectomy and they discovered that the tumor was HER2 positive. And I’ve been on Herceptin Perjeta for three years now and I’m stable, my health is stable and I’m able to take care of myself, continue my work and feel even more passionately about my work now because of that gained perspective and living this reality, I think.

Dwight:
So I really appreciate you sharing that story. I can hear the sadness in your voice about the vulnerability that that kind of illness can create.

Erika:
I think the emotion comes from reliving those visits with hospice and realizing, and having to tell my daughter that was the hardest thing that yeah, that was the hardest thing ever.

Dwight:
To inform your daughter. How old was she at the time?

Erika:
She was 16, 17? Yeah. Yeah. And my son was just a baby. He had no clue. In some ways, it was just a joy to have this spirited, gurgling little child who had no idea the weight of what was going on around him. And, you know, all the funny things that come with kids. Really, I don’t know how I might have made it through it without that. But my daughter was, I mean, she was deeply impacted, I’m sure.

Dwight:
Yeah, well, you’ve had an incredible wealth of experience here then; you are a professional in this area, gerontology, dealing with hospice as a professional and then became a patient. So you’ve seen this from both sides of that coin.

Erika:
Yep.

Dwight:
Erica, you were involved during the time your ongoing diagnosis was occurring in the testimony in the New Mexico legislature. Would you tell us a little bit about that experience?

Erika:
Yeah, actually, so I was diagnosed in 2018, but in 2017, I was a happy, young, excited, new professor in social work in New Mexico, a new state. I was enjoying the new landscape of the desert and exploring with my daughter and as I had in Arkansas, served on the board of the state chapter of National Association of Social Workers. When I got to New Mexico, I joined the Board of Social Workers in New Mexico and ASW, New Mexico. And so they have this day that’s called Lobby Day, and we all go up to the Capitol, up to Santa Fe, and there are a number of different bills that we go and we’re guided by our lobbyist, Karen Whitlock at the time, on how to approach legislators and how to give testimony. And so they all traveled up there. We went up there, we went through our training and we went to the Capitol and we all chose different bills that we were interested in or had some history or experience to share in our testimony. And so I went with students to the medical aid in dying bill, and we gave testimony. We all had shirts in the same color.

Erika:
And afterwards, many people have commented on how they thought that was very powerful and I was so proud of them. But it did not pass at that time. So that was 2017. But then in 2021, of course, mid-COVID, so they weren’t giving in-person testimony. And not to mention I was in Arkansas and quite sick at the time. I gave virtual testimony two or three times during the 2021 session and was so impressed by Debbie Armstrong and the work that she and her daughter did to get us organized. It was just flawless. Compassion and Choices had organized all of the people giving testimony and just had us very prepped. Anybody who’s going to give testimony, I think that organization and being prepared, knowing how long you have to speak, knowing over and having different perspectives shared, that just did a beautiful job. And I was so excited to be a part of that personally and professionally. This time it was very different and much more emotional for me. So yeah, and we did that virtually again because of COVID and everybody was holed up. But, and then it passed and that was just amazing.

Dwight:
Just to remind the audience, the New Mexico law, medical aid in dying law passed last year, 2021, and they’re now in the stage of implementing that law and have been able to serve the latest count, I believe, close to 200 plus patients who have decided to make that choice. Good for you for having been part of that testimony and then success in the legislature.

Erika:
Yeah, it was really, there are so many impressive people that were a part of getting that bill put together and pushed through. I’ve met some of the most intelligent and wonderful people through the process of this, so.

Dwight:
Erica, let me ask you, what is your own personal belief about medical aid in dying?

Erika:
Sure. So I firmly supported it even before I got sick. I don’t believe that what we’re doing in the United States allows for everybody who should have access to medical aid and dying to have it. That’s a personal belief. That’s not the perspective of some of the places that I work. But my own personal perspective is that,you know, I think of the woman with Huntington’s disease or I think of people with dementia. I worked in a memory, there was a memory clinic as well that I worked at in the senior health clinic. So having the ability to plan one’s death or to prepare is so empowering when you have absolutely no control over the fact that your life is ending. To be able to do that in connection with the people you love, and in a methodical way, it’s a gift. You know, I want to have a gentle death. I want to have my people around me. I want that opportunity to die on my own terms. And you know, that we can do that is amazing. It’s such a gift. And, you know, I see other realities where people are in pain, gasping or just in psychological agony at the end of their life. When is it going to happen or how, you know, gosh, liver metastases are so painful. It’s a very difficult way to go. And facing that was excruciating psychologically, not just physically. Let me do say that I am physically located in Arkansas, which brings with it all sorts of implications in that in Arkansas, medical aid in dying is not legal. Nor do we have any closely surrounding states for me where it is legal. So for me that’s a real challenge because I’m here to have my family support as I go through treatment. However, you know, I don’t currently reside in a state. I’ve been working at a distance, but there are very large parts of me that wants to potentially return or be physically located in New Mexico because of the law that were extended to more people. But I’m happy with what we have in New Mexico for the time being and for myself, yeah.

Dwight:
Yes. So what advice would you give to people who have a terminal illness and are preparing for their death?

Erika:
Yeah, I have prepared extensively for my own death for obvious reasons. I would say look at it as an opportunity, a way to empower yourself in a situation that’s unbelievably difficult can be therapeutic. Research shows that people fare better psychologically if they accept the reality that they’re dying rather than deny it. Right? So to accept it and plan for it, I think can be a relatively positive thing. There are very few things that can be good at the end of life, but that’s something. And so to have that opportunity to tell people what they mean to you is so precious. And to write letters and videos, you know. I have children, so for me, that’s an opportunity that I might not have if I died suddenly. Some of the more things that you don’t think about come up. Like when you have that opportunity, like all the passwords to all the numerous accounts that I have, making sure that those are available to people. So they’re not scrambling. Because I will say that when I worked with seniors, sometimes after a person’s death, that scrambling to get passwords or get to a bank account, oh, I need a death certificate for this, that and the other and all the things that you have to get in place when you’re grieving. I mean, it’s so difficult for people who are grieving to accomplish that. So to be able to do it in preparation is a wonderful thing. And End of Life Options New Mexico has wonderful checklists and documents for helping people, but there are many resources out there to help people consider everything that they might need to in advance. And like I said, that can give you one small piece of empowerment, peace to know that you’re setting people up for after you’re gone.

Dwight:
Well, you’re very articulate here about the opportunity of this. Not only from a pragmatic standpoint, helping in finding a bank account and internet access, but also in terms of the emotional components of having the opportunity to tell people that you love them and that you’re going to miss them, and how you feel at this point about that relationship.

Erika:
Yeah, especially with children. I mean, hospice is a wonderful service and they’re so used to working with people at end of life that they know these things. I’ve heard beautiful stories of people who have arranged in advance for something to be gifted or shared with their children on the day they graduate or the day they get married. You know, they’re not there, but they can have that planned in advance. I mean, it just gives you shivers. It’s really, yeah.

Dwight:
So we’re going to conclude this podcast relatively soon. But what are some of your plans and hopes for the next couple of years of your life?

Erika:
Well, interestingly, my PhD is in public policy and of course my practice has been in gerontology. And so those two things have always been at the core of my work and research. And it’s a very easy shift for me now to move into looking at medical aid in dying as a policy and how it impacts people. I think more than the quantitative numbers, I’m now interested in hearing the qualitative stories of people and their experiences, especially in these new realities. For people in New Mexico, it’s a very unique pocket of a population in New Mexico, and so to study that is a real interest to me. I will say that for people who are dying, before my health became stable, what was so salient and important to me was a sense that I had given back, that I knew that I had left the world in a positive balance. And that my relationships were good and meaningful was so important to me. And so I still have that with me, even though my health is stable now. And I’m interested in looking at also in grief and bereavement for people who have a loved one who utilizes medical aid in dying. I think there are some really interesting things that we need to explore as practitioners supporting caregivers. I think that medical aid in dying is such an individual choice that we emphasize the experience of that individual. And hospice does a beautiful job of supporting the caregiver as well. And I want to make sure that in the context of hospice being used or not being used for people who are taking part in medical aid in dying, that we’re looking at the caregiver and making sure that they have supports as well.

Erika:
Because if you think about it, anticipatory grief is when people know they’re dying, know their loved one is dying, and they’re anticipating the grief that they’ll experience after they passed already, even though the person hasn’t died yet. And I think that there’s some real unique difficulties for caregivers or loved ones who are with the person they love. They know they’re going to die and it’s going to be through medical aid in dying. There’s a day, there’s a time, there’s a place they’re going to die. And in some ways that’s very beautiful. And in other ways there are unique supports that we need to provide to the person and to the caregiver. And then also after the person has died, when the real grief sets in, some people might feel a bit of shame that their person used medical aid in dying or maybe they’re not ashamed, but other people might make them feel ashamed that their loved one used medical aid in dying. So maybe they don’t share and communicate with people about their loss. There are just so many unique things that we really need to explore more and make sure that our social workers and care providers know the ideal ways to help and support these people.

Dwight:
You’ve got a lot of energy for all of this still, and I’m really happy to hear that there’s some focus on the caregiving side of this. I think those are the folks that have been kind of the last attended to in this drama of death and dying. And good to hear that some perspective, some research will be spent time on them. I really appreciate you being willing to share your expertise, public policy expertise, gerontology, social work expertise, but also your own personal vulnerability. That’s a gift that you’ve given our audience. Thank you for that.

Erika:
Well, thank you to your audience for having a curiosity about the perspectives of other people. I think that’s at the core of what we’re trying to do is understand what other people’s experiences are.

Dwight:
Yeah. Arizona End of Life Options is probably a year and a half, two years behind where New Mexico is. Our hope is in January we’re able to get a hearing on our bill and ideally to pass it in this coming session. And these podcasts will help our public become more educated as to the nuance and the subtlety of this law and the process. So thank you very much, Erika, for your time and your attention today. You’re a wonderful person.

Erika:
Thank you.