I feel honored to introduce today’s guest Dr. LaVera Crawley. In the field of medicine and ethics, LaVera is internationally known for her work on healthcare disparities in palliative and end-of-life care. After a 16+ year career at Stanford as an empirical bioethicist, LaVera Crawley began a new career in spiritual companionship, bringing together her work in medicine, ethics, social justice, teaching, research, and public health with her longstanding interest in spirituality. She is currently the Palliative Care Chaplain at the Alta Bates Summit Medical Center and a certified educator for hospital chaplains. She’s also Chair of the Board of Father Richard Rohr’s Center for Action and Contemplation.
Spiritual Companionship
You can listen to the full conversation by clicking ‘play’ above, or on the following podcast platforms:
The following is a taste of my conversation with LaVera:
Q: Dr. Ira Byock, another guest on this podcast, says that even as we die, we can grow well beyond how we’ve lived. Do you agree with that?
LaVera: Of course. I came to know that intimately when I was diagnosed with a life-threatening very serious immune disease called sarcoidosis. I can remember going for a series of scans, and in the dressing room, suddenly feeling like something was just pushing me against the wall and saying, “Pay attention. Wake up. This is what life is. Life is facing death.” And I mean, that moment changed everything. I saw everything differently.
Q: What can you share with us about denial at the end of life?
LaVera: Denial is actually a very important process that we have to go through. Because it’s saying, “It is the doorway into the liminal.” And it may say, “I’m not quite ready to go through that door, yet.” It may just be saying that. It’s not saying, “I don’t want to go there or this is not true.” It’s saying, “I’m not quite ready to go there.”
Q: How can we practice spiritual companionship for a loved one who is dying?
LaVera: What the dying person wants: Will you be with me and not push me further than I need to go or than I can go right now? And if I can trust that you’re just going to be with me exactly where I am right now, then maybe when I’m ready to take that next step where you want me to go, then you’ll still be there with me.
When asked if there’s one last thing she’d like our listeners to hear, LaVera says, “My invitation to listeners is to make sure that you understand your purpose of being alive, of being on this planet at this time, and know your guiding principles.”
About LaVera:
LaVera Crawley, MD, MPH, describes her spiritual journey as a dedication to the path of “Radical Servanthood” first as a Board-Certified Family Physician on the Navajo Indian Reservation; as an at-home mom; then as an empirical bioethicist at Stanford focusing on health inequities; and currently as hospital chaplain practicing the art of spiritual companionship. Each step along the way she has heeded the call of that still, inner voice, which has led her to her calling as the Director of Spiritual Care and Clinical Pastoral Education at the California Pacific Medical Center. She is also Chair of the Board of Fr. Richard Rohr’s Center for Action and Contemplation.
Find LaVera on Social Media:
https://www.linkedin.com/in/lavera-crawley-64ba195/ (LinkedIn)
Book Mentioned in the Interview:
Nothing Bad Between Us: A Mennonite Missionary’s Daughter Finds Healing in Her Brokenness, by Marlena Fiol, which is now available for pre-order on Amazon.
About Marlena Fiol:
Marlena Fiol, PhD, is a globally recognized author, scholar and speaker. She is a spiritual seeker whose work explores the depths of who we are and what’s possible in our lives. Her significant body of publications on the topic, coupled with her own raw identity-changing experiences, makes her uniquely qualified to write about personal transformational change. She is also a certified tai chi instructor and freelance writer whose most recent work has appeared in numerous literary magazines and newsletters.
Find Marlena Fiol on Social Media:
Facebook
Twitter
Instagram
LinkedIn
Podcast Transcript:
Interviewer: LaVera, welcome. Thank you so much for joining me today.
LaVera: Well, thank you for the invitation. I’m quite honored.
Interviewer: LaVera, in a recent interview, you stated that the work of training chaplains was the culmination of many paths in your life. As a way of introducing yourself further to our listeners, what were some of those paths and how is the work of training chaplains the culmination of those paths?
LaVera: Well, that’s a great question. And I’m not quite sure how far to go back, but I’m gonna start more recently. And by recently, I mean, how I came to see that during a midlife crisis in my 50s. So, my background, I was a physician, trained as a family practice doctor, practiced on the Navajo reservation. And how I got there was also its own path. But I was always drawn to service and service for the underserved. And going to the Navajo reservation really sort of satisfying a lifelong craving I had to join the Peace Corps or to go somewhere and to really immerse myself in another culture, another environment for service.
So I had done that and the parallel track, and that’s why I’m saying it’s how far do I go back as I’ve always been deeply, deeply spiritual. I can remember as a preteen, really longing for a closeness to something more transcendent than myself. I was raised Catholic. So, that had always been a very important way that I identified myself, that is as a deeply, deeply spiritual seeker, spiritual person who was constantly seeking for that. So that was always going on. And then I was in medicine on the reservation. And that was the first time I started seeing a possibility for connecting that spiritual part of my life to my professional part of my life because this living among the Navajo, you know, there is no distinction between life and religion. It’s not just something you do on Sundays, it’s just incorporated into the whole way they see the world.
So that was really the first time where I saw the possibility of paths coming together. I left the reservation. And by that time, I was a young mom and eventually found my way back into… I took some time off from medicine to be that at-home mom, which I always say was my most favorite job of all jobs that I’ve had. But anyway, my son is now starting school and I wanted to get back in the work-life. So I retrained in medical ethics because it really was the next question to, “Well, how do I take what I learned on the reservation and then bring that back into the regular Western world and professional world I was living in?” And ethics became a great way to consider that. So I retrained in medical ethics, and as a researcher. And did that for quite a number of years, I was on the faculty at Stanford in the School of Medicine. And I loved teaching. All that was wonderful. But at elite academic institutions, sometimes you have to park God at the door. So then I didn’t quite see where I could continue that integration of that spiritual self with professional self. But I was developing myself professionally and academically and loved that work. But fast forward, I just decided I needed to have that integration again. And now by this time, I’m in my 50s, and I’m having my midlife crisis.
And I gave myself an opportunity to rethink by taking a sabbatical. And prior to that sabbatical, I took a year to discern, how am I gonna find this new path? And that led me to… And that’s a whole another podcast of that whole discernment process. But eventually, it led me into taking a year off and training as a hospital chaplain. I had the intention after that sabbatical of going back and taking what I learned in hospital chaplaincy back into my work in hospital clinical ethics, except that I got totally bite by the chaplaincy.
That then comes to your original question. Hospital chaplaincy called on who I was as a trained physician to really understand disease, and illness, and hospital systems. It called upon that spiritual part of me that by this time I’d also start developing, I went to seminary and took classes. I had discovered The Living School of Action Contemplation, which is Father Richard Rohr’s school out of Albuquerque. And I had done all this sort of inner training. And all of those worlds came together in serving as a chaplain and serving patients. I think what I had missed most in the academic world was that direct one-to-one connection with another human being through their suffering and through their joy, such as delivering a baby, a healthy baby. I had missed being sort of intimately a part of that, and chaplaincy gave that back to me.
Now, the other thing I had mentioned was I taught on the faculty at Stanford, I loved teaching. And that also goes… I could have started that story back as a child. But I come from a family of educators, and healthcare providers as well, but educators. And I think that over the years, I’ve learned that that was one of my spiritual gifts. So, I love chaplaincy. I love how it brings together all those worlds for me, but I missed the teaching. So I went and retrained to train chaplains. And one of the joys of that was an opportunity I had a couple of years ago for two years in a row to train medical students to be chaplains. You know, not that they would then become that as their profession, but they would carry the tools that you get a chaplaincy, which they don’t give you in medicine, to be able to really sit with people, no matter what they’re going through, no matter where they come from, and to really learn how to spiritually companion them.
Interviewer: Yeah, you truly did bring those paths together. It’s beautiful. Yeah. Dr. Ira Byock, another guest on this podcast, I believe you know him?
LaVera: Yes.
Interviewer: He said that the dying stage of life… and you have spent a lot of time with people during that stage of life – that this dying stage holds remarkable possibilities and moments of meaning and growth. In fact, he’s argued that the adage that people die as they have lived is only half true. He says that even as we die, we can grow well beyond how we’ve lived. Do you agree with that?
LaVera: Of course. I came to know that intimately when I was diagnosed with a life-threatening very serious immune disease called sarcoidosis, I got the diagnosis not that long after my own mother had died back in ’89. My mom died in ’89 and I got diagnosed around ’91. And my mother’s death was the first real death in my family that shook me to my core. And so that was so fresh, and I got this diagnosis. I was being worked up for cancer. And, you know, as the doctor told me, “Well, the good news is it’s not cancer and the bad news, it’s sarcoidosis.” And most folks, I’m sure have never heard of that disease. But it’s a pretty bad immune disease to have and a good portion of people die from the disease. I could rattle off some celebrities who’ve died. But that’s not important here.
So I remember that moment of not just receiving the diagnosis, the doctor told me that and I came in to do the next workup and I can remember going for a series of scans, and in the dressing room, suddenly feeling like something was just pushing me against the wall and saying, “Pay attention. Wake up. This is what life is. Life is facing death.” And I mean, that moment changed everything. I saw everything differently. Everything was much more precious in life. Connections that I had lost, friends that had sort of gone by the wayside. I reconnected. Yeah. So I could go on and on with just sort of explaining that, but I’ve said from that, I think that our language does a disservice by thinking of life on one end of the spectrum and death on the other end of the spectrum as opposed to seeing it as in this non-dualistic way. And if we can see it that way, then we hold the preciousness of life so much greater. Yeah. So I totally agree with what…
Interviewer: And if Ira were a part of this conversation right now, I think he would add that the language again, the issue of language that he speaks of dying rather than death, and that the process of dying is part of living. And that also is linguistically important how we talk about that. The cases in his book, “Dying Well” show us that some people, in fact, at the end of life do grow and have remarkable moments of meaning and possibilities that they didn’t have during their lifetime, but others do not. So it’s not a universal phenomenon. I’m wondering if you can speak a bit to what we can do, how we can show up for that meaning and growth to manifest as we journey into the dying stage.
LaVera: So when you say “We,” are you saying, How can…? If I’m going…
Interviewer: Any of us. Yeah.
LaVera: Yeah. Okay. Yeah, you know, it’s a process of waking up. And there’s so many things that we need to wake up to. I mean, right now in our American society, but also globally, we’re waking up to the realization that we do not live in an equitable society. We’re waking up to the vulnerability of life with this pandemic that’s accepting us. So, some of us aren’t ready to wake up. Some of us… I mean, all the deep spiritual traditions teach about levels of consciousness and that’s another way of talking about this. So your question then is, how do we get people to wake up?
Interviewer: Great way to frame the question.
LaVera: Yeah.
Interviewer: Or let me put it more personally, how can I wake up? What must I do to wake up?
LaVera: Well, just the fact that you’re having these podcasts, the work that you do, you’ve already done that. So, let me say a time before any of us have really awakened. And I’m gonna actually amend what I say because waking up doesn’t necessarily mean you have to know all the facts and learn all the history and all of that. I think particularly bring it back to this death and the dying process. And this is gonna sound very simplistic. But if I had to reduce my religious or spiritual beliefs and faith into one simple thing, it is learning how to love. So I think that you don’t have to have this grand epiphany at that moment of death. You just have to hold on to love. Where was it in your life? Where was it missing? And grieve that and to just be in the midst of love where it wasn’t but just understanding that this whole foundation of existence is based on our capacity to open to love.
Interviewer: Yeah. Yeah. And our capacity to grieve about those times when we were not coming from love. Yeah. You write and I’m quoting here, “To heal from our suffering, to transform it into the source and substance of our growth and wisdom requires a journey through it.” My spiritual teacher and your colleague, Father Richard Rohr, also talks about the need to embrace and move through our brokenness. And I’ve certainly experienced this in my own life. In my new book, “Nothing Bad Between Us,” I describe my brokenness as a major source of healing. My question is this, “Is it always necessary to fall, to break before we can experience true healing and wholeness?”
LaVera: I don’t know if it’s always. I don’t wanna speak in those sort of extremes. I’m sure there are lives well lived in which there wasn’t the extremes of grief. And let’s go back to this idea of life and death in the dying process. That is an inevitable thing that’s gonna happen to all of us. And there is loss in that. And so how do we hold the loss of our loved ones who have gone before us, the loss as we are leaving? When I got my diagnosis, I had to really reorganize my priorities and let go of some things. And there was grief in that. So I doubt if there’s anyone who escapes it completely. And then there are those who live it horrendously, every moment of their life. I think of refugees, I think of people who are in war-torn areas, I think of those in extreme poverty. So do we need that extreme to wake up? Probably not. And we’ll still experience some degree of it at some level of our life.
Now with that as a given, how do we use that to reach that point of love, of understanding love, of embracing love, or waking up to the suffering of others? We use that… How do I wanna say this? If we are willing to sit with that difficult pain, and it’s a learned process that if… You know, it’s like, we wanna medicate it away. You know, we want to avoid it with filling it up with distractions. And all that does is postpone some reality and some opportunity for life to… It’s not life is knocking on the door saying, “Wake up. Wake up.” And if you don’t wake up, it’ll come again eventually. So it’s an important process for us to just acknowledge it. And once you acknowledge it, can I sit with it? Can I sit…? Can I just hold this pain?
I have a practice in which I experience if I’m under anxiety, or feeling the loss of something, or nervous about, or feeling just generally, you know, yucky, I’ll take a moment, and I just try… And it’s all imaginary. It’s all metaphorical, but I try to imagine finding my way to the center of that. Often we get to the first edges of it, and that’s when we say, “Oh, I don’t like this. I’ll distract myself. I’ll take some medicine or I’ll do something. You know, I’ll have a drink or whatever, I’ll go party” or whatever people do. But if I just let it go deeper, it gets a little harder but I’m trying to get to the center of it. And when I finally can get there, and again, what does that mean?
It’s an imagination thing, but I feel like, there’s no further place I can go with this, I then breathe into it. And I just sit with it. I don’t try to get rid of it. I just try to look at it. What do you have to teach me? And it doesn’t speak to me necessarily and say, “Oh, here’s what you need to learn.” It just gets quiet. And if I can sit with it in the quiet, I can tolerate it. And if I can tolerate it, then I can listen to it. And if I can listen to it, I can ask, “So, what are you trying to tell me?” So it’s how I kind of get to that. I also in that quote that you just read, that quote comes from my learning through a book by Miriam Greenspan, which in my teaching of chaplains, it’s a must-read. It’s a requirement that you read her book, “Healing Through the Dark Emotions.” And she has practices in there as well on how to sit with that, because it’s only once you sit with it in that silence, and then you can start hearing what it has to tell you that you could heal from it.
Interviewer: Yeah. Yeah. You’ve written a lot about liminal space and I’m again quoting Father Rohr, “This space where we are betwixt and between, having left one room or stage of life, but not yet entered the next.” As a chaplain, you regularly enter those spaces with your dying patients and you suffer the grief and the uncertainties right along with them. For many of us, LaVera, it’s very difficult to be with a loved one who’s entered that place and maybe even more frightening to imagine ourselves in that place. What can you share with us about how we can more fully show up for others and maybe more importantly for ourselves in that liminal space that will all pass through someday?
LaVera: Yes. Well, I’m gonna maybe sound like I’m repeating myself, but it’s teaching yourself to sit incrementally with it. I wouldn’t expect, when my mom got her diagnosis, I went straight into fix-it mode, and got so busy with everything, you know, helping her get all the way to the Mayo Clinic and, you know, we were desperate to try to cure her from this. And in all that busy work, I never really stopped to say, “Mom, how are you feeling through this?” I don’t wanna say never because I eventually did it at some point where she said, “Stop. Please stop.”
Interviewer: Yeah, it’s a similar story… I mean, you write about a patient named Larry, who he was basically clinging to any hope and possibility to prolong his life and his sister believed he was in denial. And I guess Larry’s story or what you just said about the fix-it mode in relation to your mom, based on your experience, how does one distinguish between reasonable hope and really the reasonable path is to seek further treatment and unreasonable wishful thinking, that is truly denying what’s going on. Where’s that line? How do you discover it?
LaVera: So, I’m gonna take a couple of steps back. I had a really wonderful insight that came through working with Elisabeth Kubler Ross’s work. And, you know, she was such a gift to the end of life world to help us to rethink that. And unfortunately, it got sort of put in the sort of sound bite quality. So things like saying your denial is, like, supposedly a bad thing. But what I learned from if you really read her work, denial is actually a very important process that we have to go through. Because it’s saying, “It is the doorway into the liminal.” And it may say, “I’m not quite ready to go through that door, yet.” It may just be saying that. It’s not saying, “I don’t wanna go there or this is not true.” It’s saying, “I’m not quite ready to go there.”
And so, at that point, where is the person willing to go? And so it comes back to your original question, like, how do we help people? As we’re holding that thin line of hope, and I’ll come back to hope in just a minute. But it’s like, so embrace where they are. And it may sound like denial, but I wanna reframe denial as this is what I can hold right now. Will you hold it with me and not push me further than I need to go or than I can go right now? And if I can trust that you, so these are those who are companioning, if I can trust that you’re just gonna be with me exactly where I am right now, then maybe when I’m ready to take that next step where you want me to go, then you’ll still be there with me.
Interviewer: Oh, that’s lovely. Yeah.
LaVera: Yeah. So, I like to reframe denial in that sense. And now what about hope? Hope is another one of those words that if I was speaking to you in research speak, I would say it’s a latent variable. And what that means it’s not something… It’s like love or any of these other things that you can’t go and put your hand on love and hold it tight. You know, it’s not an object that we can see. The same thing as hope. But we can think about all the various things that make up this abstract idea of hope. And what we find is it means different things to different people. It means different things to different communities, different cultural aspects of it. So, when I am trying to find how someone sees hope, I’m just simply listening. And I’m listening to… You know, so in the western mindset, hope has to do with something in the future. It has a time, a temporal base to it.
So I’m listening if that’s what they’re talking about, what are things gonna be like in the future for me? Then I’m gonna enter into that conversation with them there. For other groups, hope is about connecting with people. It has no time base whatsoever. So, part of understanding how to help someone with their hope is very similar to what I just said about, you know, denial. It’s like learning how they see it, meet them in that hope space and be with them. I did learn something very wonderful from the Schwartz Center, who that’s out of Massachusetts. And it’s an organization that’s focusing on training health professionals to get into the compassion side of their work. And one thing I learned from one of their teachings was that you hope for the same thing that the person is hoping for.
Interviewer: Yeah. Which means you need to understand where they are.
LaVera: Exactly. And then if their “hopes” seem unrealistic, you can introduce in a very gentle way what your worries are. So, I hope that your cancer can be cured. I worry that in focusing so much on that, you’re missing out on the connection with your loved one or something like that. So it’s a way of very gently…
Interviewer: Acknowledging their truth. Yeah.
LaVera: Yeah. I think I’ll just say all… I could probably answer every question that you asked by saying, you know, I don’t practice the martial art of Aikido but one of its principles, which I think is really a universal principle, and I don’t use universalities lightly, is that if you can meet someone’s energy and join it there, you can help move them into a more loving place, a more hopeful place.
Interviewer: Yeah. Yeah. So, LaVera I may be stretching the liminality metaphor here, but it seems to me that the current pandemic has thrown all of us into a form of liminality. It’s disorienting, it’s very frightening for many. You’ve said that the healing we seek can emerge by listening to what the liminal seeks to tell us. In your view, what is the liminal we’re experiencing now seeking to tell us?
LaVera: Well, I’m still open to learning that. So, I don’t wanna give some breathie, you know, high from a mountain top answer to that because I didn’t do so well. I just have to be very honest in the beginnings of this because it totally caught all of us off guard.
Interviewer: Yes.
LaVera: So I’m not saying that the liminal is this great loving place with flowers, and flowy gowns, and, you know, purple veils. It can really knock you off. And I guess that’s where having a lifetime’s worth of spiritual practices on hand that could restabilize you but, for me, it took a while. It took a while to not be so reactive to the fear, to the uncertainty, to the how am I handling this? So, once the dust settled, and I’m not at all praising the fact that the pandemic is still going on, quite the opposite. However, it has forced us to pause. It has forced us to slow down, it has forced us to listen. And, you know, I’m gonna be honest, I’m sitting here in my beautiful home in a great neighborhood in the Bay Area, one of the greatest places on the planet, and I am not without a home. I am not trying to figure out how I’m going to pay for mortgage or rent. I mean mortgage is a privilege, rent. I don’t have to worry about those things.
So it’s okay for me to say, “All right, I’ll recalibrate. I’ll slow down. I’ll listen. I’ll go back to my practices.” That’s a privilege to be able to do that. There are those who don’t have those privileges. And so, the liminal is, I just guess I don’t wanna romanticize it. I wanna say that pain and suffering is pain and suffering. It may serve an outcome, but it is still painful. It is still suffering. From that, I have to draw from my understanding of social justice and the teachings of the Catholic Church around the social teachings of the Catholic Church. And at that point, then it really means, all right, I’m able to find some sense of peace in this, but the rest of the world may not. So I can’t just rest at feeling safe and back to my practices and able to calmly sit with the uncertainty. I have to have solidarity with those who don’t have that privilege and see what they need, and move into that space. That’s…
Interviewer: It’s again being with an understanding. It seems to me that so much of what you’re saying has that common thread of being with. LaVera, you serve as the chair of the board of directors of Father Rohr’s Center for Action and Contemplation. And you were talking just now about equity and inclusion. And so much of your career has been devoted to diversity, equity, inclusion. And you’re actively working also to ensure that the CAC, the Center for Action and Contemplation embodies those values. Would you say a bit about what the CAC is doing, not just to address…? And I love the way you distinguish between addressing those values and truly embodying diversity, equity, and inclusion.
LaVera: So what is the CAC doing in that area?
Interviewer: Yeah.
LaVera: Well, it’s waking up. And recently the executive director, Michael Poffenberger wrote something right as the George Floyd murder and reaction, societal reactions were just opening up. Michael wrote a very important piece to sort of say what… I wish I had it in front of me right now because that would be a great thing to quote. But one of the things that he said because he ran it by me and asked me what I thought about it, and for audience members who may not know, I’m a woman of color, I’m African American. And Michael is white. And so both in my role as a chair, but also as a person of color, and in some ways, a coach for Michael, he, you know, said, “Could you take a look at this?” And he wrote something in there that is not new to me, but it’s sort of struck me in a new way when he identified that the CAC I think the first wording, you know, the first draft of it was, like, is a white organization. Now, those weren’t his exact words, but that’s the impression that I got from it. And I pushed back and said, “Why don’t you say that it is an organization that has a lot of white people, instead of saying that it’s a predominantly white organization.” So I think what he was saying in that first wording, was reflecting on what it was like for me to first enter into the living school, which was my introduction, my formal introduction to Father Rohr’s work.
And to go in…so the living school takes in about 150 students per year. And our first gathering, I show up and I look around, and there is one other African American in that large space. And I had gone to many other… All my life I’ve been drawn to certain sort of spiritual movements, and I’ll find myself to be the only person of color or one of the very few people of color in that space. And I had talked to Michael and others at CAC of what that experience was like for me. But as a spiritual seeker, and I think many people of color have, unfortunately, had to do this, we learn to bracket out the parts that don’t work for us in these white-dominant spaces, and look for the spaces where we can get something from that.
So I’m now 64 years old, so I’m of a certain generation that that’s how we learn to cope. Parenthetically, I’m so glad that the younger generation, my son’s generation, and those younger than my son, don’t have that baggage. They say, “No, this space is not inclusive. That’s not okay,” versus my generation, who might have a tendency to say, “All right, well, I’ll get what I can out of it. So, anyway, I think that was a part of what Michael was was was grappling with. And so…
Interviewer: I read Michael’s piece and it was, I don’t remember it exactly, but I remember the tone of it being one of vulnerability. And it seems to me that the waking up that needs to happen must include a pretty heavy dose of vulnerability.
LaVera: Yes, any kind of waking up requires vulnerability. Because you’re seeing the reality, you know, that the scene in the matrix where it’s the blue pill or the red pill, it’s that. It’s choosing to take the pill that’s gonna wake you up to not only the beauty of existence but its ugliness. And so, I think that… So, lest anyone take away that any changes happening around inclusion and belonging across difference that’s happening at CAC, I think it was timing. I think it was all the individuals who have shown up to serve CAC at this time being open to waking up and to our own vulnerability is as you said it. I think the current leadership running the organization, and I’m not speaking about the board, I’m speaking about the day to day operations, I think the organization is in exquisitely wonderful hands and will stumble, but to stumble is the fall forward quickly sometimes. That’s…
Interviewer: Yeah. It’s even sometimes falling upward.
LaVera: Yes. Exactly.
Interviewer: So your commitment to diversity and inclusion shows up also in your efforts to address the disparities in palliative and end of life care. I’m wondering if you could speak a bit to that. Are the disparities primarily in the utilization of palliative care or in the quality of care or both?
LaVera: Well, so, disparities, there are differences, and then there are those differences that are just for the basics. You know, women are different than men, and so their biologies are gonna be different, their illnesses may be different. So not all differences are problems. But there are differences that come about when we have not been fair, when there’s been inequity. So that was my focus to look at how… Well, let me back up. So I entered this when I decided to retrain into ethics, I was hired as a research fellow at the Stanford Center for Biomedical Ethics for a project that had just been funded by the Project On Death in America, which was George Soros’s, one of his projects.
And this project was designed to look at how vulnerable populations, and in this case, low-income African Americans. And I pause between those two because I don’t want any of your listeners to conflate being African American with being low income, which is a common misconception. So, very specifically looking at low-income African Americans who were facing these difficult decisions when one gets a bad diagnosis. And so I followed 10 individuals over the course of two years, some was less than that because they died before then, some of them are probably still living, but the study was ended after two years.
And the point was to look at how they interact with the healthcare system, what kinds of decisions needed to be made? What sort of things evoke the need for a decision? And then what was the resources…what were the resources or the processes that these individuals drew from to be able to make the decision? And a lot of this was cultural. But what I saw in the hospital that I did my study was so many unjust practices that just shouldn’t have happened, people not being adequately consented. You know, the centerpiece of medical care in the bioethics world is informed consent. And people were not being informed, and not necessarily asked to give consent properly. And I watched the suffering that happened as a result of that.
So, you know, it broke my heart. That study broke my heart, but it let me realize that if I’m going to… And there’s another little story that came out of that, and bridging it with what it’s like to walk into predominantly white spaces. So, while I was doing that work and doing reports, I would speak at different conferences and, again, I’d be the only African American or one of very few African Americans or other folks of color who were addressing these issues in these communities, you know, the African American or other people of color communities. And I decided what’s needed are more people to understand death is inevitable and we need to learn to serve patients better.
So I went to the National Medical Association, which is the equivalent of the AMA, the American Medical Association, but for minority physicians particularly for African Americans. And it was started around the same time that the AMA started because the AMA did not allow blacks to join, initially. Now, that history is a little bit more complicated than that. So for the historians out there, pardon me for the brevity of summarizing it in that way. But nonetheless, I went to the National Medical Association, which I was a member and made a presentation. And for that point, my goal was simply to rally the troops to get this august body of African American physicians, and healthcare leaders and providers to enter into this world so that I wasn’t going to be the only person of color doing this work.
So I presented one of these cases from this study that I just described. And at the end of it, someone in the audience stood up, in fact, it was Dick Gregory for those who happen to know who Dick Gregory is, he, may he rest in peace, was a social satirist of the time in the 50s and 60s. And at some point, he got very interested in health and started coming to this annual meeting of black physicians. He asks me a question. So, basically what I had said was, “Here’s a case of a woman…” You know, ironically, it was about denial. The doctors all thought she was in denial, whereas she was simply in a very different space, but not necessarily denying what was going on with her.
And the black doctors in the audience would have recognized, “Oh, she’s not in denial. She’s just dealing with these sort of racial issues that are going on right now.” And the so what of my talk was, please consider educating yourself about palliative care, end of life care, get to know the hospices in your community, and so that we can help our people have a more comfortable death. So Dick Gregory stands up and ask, “So they want us to be comfortable with dying?” I mean, and the so what in that was, we die prematurely. We don’t get access to the same resources that others get.” And so are you saying, “Oh, just accept the status quo and become comfortable with dying?” And the irony of what he was saying to me struck me so strongly, that I stopped doing, temporarily, end of life work and started looking upstream. I also have a degree of public health so I started thinking more upstream. How do you prevent the fact that our people die inequitably? How can I prevent that?
So I moved a lot of my scholarship upstream to preventing cancer prevention, the goal being I’m hoping that all of us when it’s time for us to die, it is because it’s time for us to die, not because of something that society has prevented us from living. So I don’t know that really infused a lot of my work, and it certainly fits back into that social justice piece, which was your opening question is like, can I talk about all the paths that led to where I am now? And one of them I could have started with my family legacy. Because that is exactly what I was taught from day one from my family to serve my community, particularly those who are not as privileged as my family has been. So…
Interviewer: So how are we doing? Have we made progress as a society?
LaVera: In what? In improving end-of-life care or…
Interviewer: Yes.
LaVera: …in the social justice issues?
Interviewer: Yes. The social justice issues particularly around end-of-life care.
LaVera: I don’t know. I don’t know if we’ve made more people know about it. But I’m not sure just knowing about it is and knowing about it means more people of color are aware of options of palliative care, of hospice. And just knowing about it doesn’t change the structural issues that make life unfair. So I don’t know how to answer that. This is an important moment in our global history with the pandemic and in our American history with facing up to the structural racism by which our country was based. I think I would love to be able to answer that question, 5 to 10 years from now, to see what we’ve done with this moment.
Interviewer: Who knows? Maybe we’ll meet again, and I’ll ask the same question.
LaVera: I would love that.
Interviewer: Yeah. LaVera, how has your lifelong commitment to diversity, equity, and inclusion impacted you personally? How are you a different person today because of all of the work you’ve done around those issues?
LaVera: I don’t think I’m a different person because… So, first of all, I don’t wanna be labeled as someone who does diversity work. I am just living the life I see. I see when things are not fair. My family ethos was you gotta do something about it if it’s not fair. So this is who I am. There’s no alternative to me. This is who I am. And that said, there are other things that fascinate me that I’m drawn to and it’s captured by that. I mean, just imagine, if you will, a room full of people who have gathered for a cause. And it’s a deep and wonderful cause. Vaguely I’ll just name some spiritual cause. And then imagine in that space, there’s just all white people. Now that’s the story I gave you about what it was like for me, for example, showing up at my first CAC event. I don’t see, suddenly it’s my job to integrate this place and to make them change. I would love for that. But I didn’t go there for that reason. I was drawn because Spirit said, “I have something to teach you.”
So I’m just gonna show up. It’s up to the rest of the spaces to say, “Are they gonna make space for me?” If the space that they make or don’t make is not hospitable to my growth, then I leave. So I admire those who start movements around belongingness. I wanna be a part of that. But that wasn’t my calling to be the leader to that. I do have eyes open to see when something’s not fair. I want to be in a space that’s both safe and brave, but I’m not necessarily the leader in that. I don’t wanna be stereotyped as to that.
Interviewer: Yeah, I totally understand what you’re saying. I wanna talk before our time is up a bit about how caregivers can care for themselves. You’ve witnessed so much suffering, and pain, and fear. And it certainly must take its toll. And I wonder if you would say a bit about how caregivers can care for themselves to not crumble under the weight of what they’re doing day in and day out.
LaVera: Well, there’s a cottage industry of self-care things that caregivers need to do. And I hope I’m not sounding, you know, like I’m being flippant about that. It’s very important. And I wanna come to that moment about self-care. But before that, I think that a caregiver needs to do exactly what my mom said to me, “Stop. Stop doing for a moment and get in touch with being.” I counseled someone very recently whose mom is in a skilled nursing facility. And with the pandemic hit, the family is not able to be with the mom in a way that they would like to be. And that caregiver was, you know, just what can I say, just suffering from the fact that they couldn’t be there with their mom, and they wanted to do this and they wanted to do that, and, you know, they could speak to the mom on the phone. And then they wanted to do this while they spoke, and they wanted their mom to be able… And I just listened to all of this doingness, that this person was struggling because they couldn’t do. And my first advice to them was to just stop. And when you stop the doing, what’s left? And that becomes the biggest challenge.
Interviewer: That’s lovely. Because yes, there are lots of lists of things out there that caregivers can use to take care of themselves. But I think underlying all of that your message is so important. Just stop.
LaVera: And be.
Interviewer: Yeah, yeah. LaVera, if there were one last thing you’d like our listeners to hear, either something that you felt was particularly important that we did touch on or maybe we didn’t get to it, what would that last thing be?
LaVera: Well, when you invited me to speak with you and your audience, the topic was service. And I thought about the fact that my life has been about service. And I mentioned that it was something that was programmed for my family. It’s what my family has done. But I thought about what guides me to do service? What is that spark that makes me wake up and say, “Okay, how am I gonna serve today?” And I think it really revolves around understanding purpose. I am truly guided by purpose. And when I’m lost, it usually means I’ve stopped being in touch with my purpose. So my invitation to listeners is to make sure that you understand how do you see your purpose of being alive, of being on this planet at this time, and what are your guiding principles?
One of my early mentors, Rachel Naomi Remen, taught me that all the religious traditions can be summarized into two ideas about purpose and that our purpose in life is to grow in wisdom and to learn to love better. So those were really important purpose statements that I sort of, yeah, resonated with and it guided me. And over time, I realized there were two other areas of that. So my mantra now is not only to grow in wisdom, and to learn to love better, but to steward justice. And I talked about that a little bit more, and practice what Henri Nouwen calls radical servanthood. And that means… And that just summarizes everything that I’ve just said. Radical servanthood is being able to serve with compassion and compassion meaning to suffer with, so to not have the fuzzy, warm, wonderful feelings as my goal, but really to be able to be with and that’s practicing radical servanthood. So that’s what I’d like to say in ending this.
Interviewer: This has been a rich and meaningful conversation. LaVera, thank you so much for taking the time to speak with me.
LaVera: Well, again, thank you for the honor of being able to speak with you. I’m so humbled and thank you.
Dr. Crawley is also Chair of the Board of Father Richard Rohr’s Center for Action and Contemplation.