What do birth and death have in common? They both represent times of profound change when patients and their families need emotional support and empathy from their caregivers, things they don’t teach in medical school. In Bookends, Dr. Susan Boron explores the powerful human aspects of caring for people at both ends of their lives. She shows how expertise in one area of care easily transfers to the other, increasing confidence and improving care and satisfaction for practitioner and patience alike.
Here’s my conversation with Dr. Susan Boron.
Welcome into The Author Hour Podcast. I’m your host Benji Block and today, I am joined by Susan Boron. She has just authored a new book titled, Bookends: A Family Doctor Explores Birth, Death and Tokothanatology and Susan, thank you for being on Author Hour and being with us today.
Susan Boron: Thank you.
Benji Block: So, before we even get to your background, you’ve got to tell us, because this title has a word in it that maybe no one’s heard of, but tell me a little bit about the title and why this became a topic that you knew you needed to cover?
Susan Boron: Okay. First of all, Tokothanatology is not a real word yet. It comes from the Greek words for childbirth and death. So Tokos and Thanatos—-ology, obviously, means study of. I actually didn’t make it up. The concept is something I’ve talked about for years but my father, who was a word nerd and also an obstetrician, had talked about the concept and coined the word, and I borrowed it from him.
The idea is that the care that we as doctors and caregivers give at both ends of life has a lot of similarity to it. So, I thought about it for a lot and thought I’d write about it.
Benji Block: Yeah. You say that during your career in medicine, you learned that people facing terminal illness need many of the same things that women giving birth need. Do you have a couple of those moments that you remember clearly like, okay yes, your father said that but then you’re seeing it play out in real life, you’re noticing, sort of having an epiphany of sorts?
Susan Boron: I had so many epiphanies. It was pretty early in my career that I realized that when you’re involved with a pregnant woman in labor, there’s a very strong biological event that’s happening that I didn’t really have any control over. I could help, I could make sure that people were safe, I could make it comfortable and good experience and then, when I was dealing with somebody that was terminally ill, that was dying, in just the same way.
I as a doctor had absolutely no control over the fact that that person was going to die. What I could do was make it a better experience, make it more comfortable. Make things safe when they could be. So that was one comparison that I noticed very early on and actually talked about it a lot. The other were some of the techniques that I found at one end of life, you were useful at the other.
Benji Block: Well, we’ll dive into some of those here in a moment here as well but I wonder as you’re writing this, Susan, who do you want to read the book, who were you imagining picking this up, and what was giving you life as you’re writing this book?
Susan Boron: Well, one of the things that I was advised to do is write as if I was writing to one person, an avatar if you like, and I thought about it a long time, and the person that came up was a young doctor who was sort of sandwiched-generation. She had a couple of children, she had elderly parents, one maybe who had died and one who is terminally ill. So on a personal level as well as on a professional level, dealing with both ends of life.
So that was my primary awning, but I tried very, very hard not to use any jargon or be very technical so that everybody that’s involved with childbirth and with dying, which really is kind of everybody, would find at least some of the book interesting.
Benji Block: I wonder, we had spoken a little bit earlier about your father and I wonder how you’ve seen your parents and then your husband, Doug, I know also had a very unique perspective that it seems like ultimately, those close to you helped also highlight some of these parallels between birth and death. Can you speak to that and some of how they shaped your thinking?
Susan Boron: Yeah, growing up, of course, with a father as an obstetrician and who was deeply engaged in consumer rights and advocacy, natural childbirth, prepared childbirth, Lamaze, that certainly colored my feeling even as a young teenager and as a young doctor, and I could see a lot of the same parallels in the early work that was happening in the palliative of care movement.
Dame Cicely Saunders in England, Dr. Balfour Mount in Montreal, were advocating sort of the same things, that we’d gotten very technical, that we’d forgotten the person at the center of all of this and had made both birth and dying basically medical procedures, and that wasn’t right, people wanted to have control over these very important parts of their lives. So I learned, sitting at the dining room table as a young kid, but as Doug got more and more involved with the Palliative Care, hearing exactly the same kind of things about the other end of life.
Benji Block: I love how you put it in the book, quoting you here, you said, “Delivering babies is a joyful but demanding, unpredictable endeavor and dealing with the dying is also challenging. With every birth I attended, I felt the miracle and with every death, the privilege of being part of the journey. I would like to see family doctors and other caregivers become more comfortable and more involved in working with patients at both ends of life.” And I think you spoke to that so well, that instead of just seeing it as these procedures, you’re seeing the person behind it, right?
Susan Boron: I think everybody that goes into medicine or nursing or whatever, goes in with the idea that they’re going to help people. We get so tied up with all of the knowledge and all of the techniques that we have to learn that it’s hard to keep up that humanity and that empathy—unless you make a conscious effort to do that.
Balancing Technology and Humanity
Benji Block: There’s a balance to be found there, right? Because you are still doing a job and you could see a lot of death or be in a lot of situations where you’re really close to families that are going through these big moments, and it’s—it can be taxing on your empathy or on your emotions, I’m sure.
Susan Boron: Sure. You know, it’s very, very important to have the technical knowledge. If you really care but you don’t know what to do or how to help, then that’s a very bad situation, you have to have both. There’s just so much demand for the technology. I think it’s worthwhile and what I hoped I talked about in this book is that we have to really keep the human aspect and we have to nurture that in our young trainees, and actually at any age.
Benji Block: Yeah, you speak into that, you have a chapter on psychological, spiritual and socioeconomic aspects of childbirth and death, and I wanted to talk about that for a bit. So I’ve yet to have kids, Susan. So when you talk about complex emotions, it’s easier for me to imagine the complex emotions actually around death since I have experienced that, but tell me where you see those similarities in the complex emotions, specifically as it pertains to psychological, spiritual and socioeconomic aspects?
Susan Boron: Okay. The family unit is not necessarily due to the traditional, what, you know, what we talked about what we talked about father, mother, child, but basically, the people that we have around us are completely impacted at both ends of life. If you think about it, whether a baby is planned or not, when you find out that you’re going to have a baby and when you first bring a baby home, the change in your life is absolutely profound and the change in the extended family.
I mean, parents become grandparents. The only child becomes the big sister and you know, and everything changes, how society looks at you changes. At a death, the roles of the family change dramatically during a terminal illness. After a death, how people negotiate each other, the balance in the family, and in the broader sense of society as well. So that was a definite parallel that I saw.
In terms of the spiritual and religious, and for a lot of people, that overlaps. But whether you look at them separately or as one and the same, there isn’t a religion that doesn’t deal with where a person comes from, where they go to, what happens at the moment of birth, what happens at the moment of death. Those are the basic tenants of all religions and all different kinds of spirituality.
I’d spent a lot of time looking at various world religions and there was so much and I thought, that’s a separate book. But I got into it just a little bit. The other thing is, the economic, the socioeconomic, what the government provides for people in terms of healthcare, in terms of parental leave, in terms of caregiving at the end of life.
There is so many things that the government has an influence on and the economic and social situation a person is in, you’re much more likely to have complications of a pregnancy or die earlier if you are in a lower socioeconomic class or if you are in a racialized group or you’re indigenous, those are big issues but they’re parallels of both ends of life.
Benji Block: So, while I know birth and death they’re highly individual and you point that out, you also to this point that you’re making, you point out the power of community and personal belief. I wonder how one might lean into those things as sources of comfort and even ritual, I like that word usage, in times of change, and then where do you see yourself as a caregiver in that picture to really assist in the best way you can?
Susan Boron: Those are big questions. First of all, there are a lot of rituals both based on religion and on general ideas in different communities at both ends of life. There is gift giving, there is bringing food, there is how and when people visit. There’s things that you do for a pregnant woman, that you do for a newborn, that you do for a dying person, that you do for a grieving person.
These are things that are set by society and that we, as adults, instinctively know but that we’ve been trained to do as the right thing to do. As a physician, we have our own rituals and some of them are based on the way we have been taught, some of them are our own ways of doing things, some of them are ways of communicating the algorithms that we know we have to do and so that we can share the care.
But the other really important thing is every caregiver is a member of a particular society. So we have to be really cognizant of the idea that what we may feel is the right thing to do, if somebody that we are taking care of comes from a different culture or has different ideas, they may have things that are very important and we have to find a way of allowing those things and supporting them.
Benji Block: Yeah, that’s an important piece to make someone else feel the most comfortable. You need to be very aware of them. You talk about, and I can quote you here as well, but around this idea of ritual but you say, “By examining some of the old and present-day customs and world rituals, we can see their importance in the study of Tokothanatology.” Could you give me an example of maybe like an old custom and what your takeaway from studying it has been?
Susan Boron: Yeah, one example that comes to mind is the idea of lying in that in medieval times, women, and I am talking mostly about the nobility because those are the ones that were written about, but you wouldn’t want to show a pregnant woman out in society. So they would hide away and they would dress in ways that didn’t show their pregnancy and at later stages of pregnancy, they would be sequestered.
Then after a baby was born, they’d be a time after where they would be kept from society, whether it’s not touching other people or not being involved with them. So the rationale behind it was sort of, “Well, we don’t want to think about that” and you know, maybe it is a little yucky and dirty and a little bit too real, but the other end of that is having time for a woman to get to know her baby.
For her, before the birth is able to rest and prepare, a family time, those are important, very positive things. There is something called a fourth trimester that some people talk about. Trimester obviously means three parts but the time after a baby is born that the family can stay inward and focus on the changes in their lives is a very interesting ritual that I have seen some people actually do. It is very nice actually.
Benji Block: Yeah, I see that too, as well as honoring and allowing for even friends, just giving the space necessary for the family to be with themselves and to get used to and accustomed to that and yes, offer help or meals and that sort of thing as well, but that time to just be together.
Susan Boron: Yeah, and you know around a death, we have rituals in terms of funerals, in terms of sitting Shiva, which is the Jewish custom of staying home after a death and friends and family come to visit the bereaved family. There were rituals around when to be with people, when to allow them to be alone because of all the things that they have to deal with. That helps you kind of guide you through what you’re supposed to do in these very emotionally charged times.
Benji Block: One of the other things I think we take a lot of our cues from around birth and death you speak to, which is media, because media portrays these moments but they are very different. Media then shapes culture and how we think about it and then you live through something and you may have a much different response, right? So having seen it in real life, what’s different? What do you see the different ways that plays out in real life versus maybe on the screen?
Susan Boron: Oh there are so many ways. My sister-in-law, who is a doula, said she just gets so mad because when she sees something in a woman in labor, it looks like it’s really fast. You know, there may be a commercial in between but basically, you have a few minutes and oh, there’s a baby. Labor itself can be a lot longer and a lot harder and a lot messier than we show it on television.
Death too, you don’t see days and days of sitting beside a person who is getting medication on a regular basis and needs to be turned. It may or may not be actively involved with the people that are sitting with them. Everything is very sanitized but at the same time, to make it good television or a good movie even, it has to be interesting and fast moving because nobody is going to sit and watch the reality.
Benji Block: It’s interesting because I feel like there is also such — and I don’t know if this is the right word to use — but such beauty in the mess of real life. That is where we are as humans and those are very vulnerable moments in birth and in death and that’s the reality of it. As caregiver too, you are there for these messy moments but those are the most human moments that we really seem to experience.
Susan Boron: Yeah, I mean, that’s the main part of life. I mean, we have big, long lives if we’re lucky and all kinds of things that happen, but if you look at a gravestone, you see a date of birth and the date of death and a dash in between. The birth and the death are the defining moments of a person’s life and yeah, they’re very, very much a part of life.
Benji Block: Well I wonder, as we start to come up for air in this conversation, we start to wrap things up, but I think it is one thing that we start, now we’re probably all going to notice these similarities but I wonder, how has that modified your approach to care? How have you seen this knowledge start to better equip caregivers both at birth and death? Like top lessons learned, main takeaways, Susan.
Susan Boron: Top lessons learned. I think one of the most important lessons is that these caregivers know what to do, that first of all, they have their own lived experience. Second of all, what they’ve learned about care at one end of life is very easy to apply at the other. The basic things are: listen to what your patient needs and what the patient wants.
Follow the best principles of ethical behavior, of making people comfortable, making them feel that they are in charge but also, that you can direct when you need to, that these are natural parts of life and not to be feared. I think a lot of people in their training think, “Oh that’s really hard. I am going to avoid that.”
As you said, it is such an important and real and interesting and compelling part of caregiving, to really dive into care at both ends of life, makes a doctor’s job so much more satisfying and interesting, helps you relate to the people that you’re dealing with and you can really, really make a difference.
Benji Block: Well Susan, thank you for breaking this down for us. It’s been a fascinating conversation. Again, Tokothanatology, the theoretical study of the parallels between birth and death especially in medical care and the book title is, Bookends: A Family Doctor Explores Birth, Death, and Tokothanatology, and thank you for being on the show. Besides just the book, are there other ways that people can stay connected to you Susan?
Susan Boron: Yeah, I guess so. I have an email address, should I give it here?
Benji Block: Yeah, if that’s the best way, if someone was to read and they wanted to reach out, that might be the best way, right?
Susan Boron: I think so, yeah. So it’s [email protected].
Benji Block: Perfect. Well again, thank you for being here for this discussion and those that are interested in picking up the book, you can go to Amazon and get the book. Susan, thank you for stopping by Author Hour today.
Susan Boron: Thank you so much.