A story of a good death [PODCAST]

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“We must believe that inside, where our spirits live, there is an understanding, a belief, in those people we have loved and who have loved us, that they will live in us even if they are far away. And perhaps more important these days is that our physical presence is less important than the voices that whisper through space and time into their ears, hearts, and souls, saying that we are, truly, here.

It may not be much solace, but it’s all we have.”

Carol Ewig is a retired teacher who blogs at Teaching-365.com and can be reached on Twitter @carol_ewig.

She shares her story and discusses her KevinMD article, “A story of a good death.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Carol Ewig. She is a retired teacher. She wrote the KevinMD article “A story of a good death.” Carol, welcome to the show.

Carol Ewig: Thank you, thank you.

Kevin Pho: We’ll get into the article in a little bit, but first off, can you briefly share your story and journey to where you are today?

Carol Ewig: Well, I’m a former teacher, 20-plus years of teaching in middle school, and survived. Before that, I was a writer and an editor, and I continued to write throughout my teaching career, actually. And now that I’m retired, I do have some more time to be pursuing that.

Kevin Pho: So you’ve written a few articles on KevinMD about health care stories. What made you interested in writing health care stories?

Carol Ewig: Well, we are a very physician-oriented family and always have been. My parents, my father, who the article is about, died at 88 from the final culmination of many, many illnesses. So basically, physicians kept him alive and living a good life. You know, the article is called “A story of a good death,” but it’s about a good life, really, in that sense. And I list in the article some of the many things that he suffered from. I have a long list.

The biggest thing was right after he and my mother moved to the area, not far from where I lived, to help me with my kids. Because we grew up in Brooklyn, they were ready to move out. And right after that, he was diagnosed with a sarcoma of the abdomen. And that diagnosis, and apparently, from what I’ve learned, to step back, my brother was a physician, is a physician. He’s a pediatric pulmonologist. He knew more than, I found out later, he was telling me. I don’t mention this in the article, but what he had was the kind of thing that they did not expect him to live from. No chemo, no radiation, nothing that you can do in that regard. There is surgery.

So they did the operation. They took out the sarcoma, the mass, to the best that they could, but there was still some left. They did not expect, they knew that would grow, and indeed it did. Now, a year later, it grows. My remembrance is that something pushed out, that it made it easier for them to actually operate. But whatever it was, he did so well, and that was it. He could follow it up for several years, and everything was good.

He had a doctor at that time who, I think. Now, I will step back to say also that my father was just the kindest patient and most gentle man, and doctors just responded to him. It was very easy for them to love him. And he had such utter respect, and my mother too, who is still alive, for physicians. As it turns out, my brother became a physician. There was definitely that medical push. Even though we were not medical people, and we did not have close family members who were physicians or anything like that, there was a push and a reverence, is all I can say, for doctors, for anybody in the medical field, really. I mean, I can’t say enough about the nurses that he had over time. They made the whole difference to him.

But so that was his first big experience with something that was so profound. And again, my brother, who knew a lot more than he was letting on, basically told me later he really did not expect that he would survive. So he lived 17 years, 18 years after that diagnosis, to 88 years old, which is pretty amazing.

So the article was really, though, inspired by the fact of, I wrote it actually two years ago. I wrote it at the beginning of the pandemic. My father, we were celebrating, well, not a celebration, his five-year anniversary of when he died. And what I started to think about was this pandemic, of course. At the beginning, as we all remember, there were all of these people who had to die alone. They had nobody with them. They couldn’t have anyone with them. And you know, nurses and physicians were using their iPhones and their iPads to try to get people to say goodbye to them before they were intubated. It was just horrific then, and it will be horrific for those people who had loved ones who had to deal with that.

And that brought me to my father’s death, which was really a good death, because ultimately, after all the many things he had, one of the big things that he had was congestive heart failure, towards the second part, I would say the last three years or so of his life. And basically, ultimately, he also had, now this is interesting, the sarcoma essentially did kill him, because his abdomen had been, you know, whatever, resected, is that probably the right word? I don’t know, I’m not the physician. But he had things moved around, and so he had a blockage as well. Several years before, with that blockage, I went to the hospital with my mother. That time, they had put the gastro tube in, all the stuff came out, and he was fine.

So unfortunately, at the last part of his life, when everything else was shutting down, he didn’t say anything fast enough about the situation. So the long and the short is, he was back. The same thing happened. They removed everything, but everything started to shut down.

So the good death part: We were able to call people. People happened to be in my area. Not my nephew, he was out of the area, but my children came, and my brother, who was in Philly, was able to come. We were all in a New Jersey hospital not far from me, and we were all able to be around him and to sort of support him, support each other, of course, but support him. And there was a talk about him getting intubated. He resisted that. He did not want that. And we promised him that if there was no hope of a good, meaningful life, we could still remove it. My brother and my daughter, who’s also a physician now, again, that push to medicine, which happened through her grandparents, you know, felt that it was something worth trying. But ultimately, it didn’t work.

So there’s the good death, the good death we got, with all of his issues and everything happening, at least surrounding him with his family. Now, we can’t all have those deaths. My mother believes a good death is having a heart attack, she’s 90 now, and then just going. Then there’s nothing. All right, but for my father, who, everyone is scared, but he was really scared, it was a good death.

Now, what made me, of course, very different from the pandemic, but back to the physicians. Because I was raised that way, and because we do have that reverence, because we saw how people cared, it just made the whole difference in his whole life. So his good life was because of these doctors who, they became family to him. What I started to think about was all of the people. I mean, obviously, physicians, I know, I have two in my family, they are busy. There is so much going on. There is so much they need to attend to. And now, of course, they’re typing, you know, and we don’t always have that eye-to-eye contact. But that remembrance of, this is a human being, this is a person, this is someone’s family member. And I know that physicians do that a lot. I know nurses certainly do. But it’s just making sure to sort of pull all that together, so that the good life happens, thanks to the physicians and clinicians and nurses who made the difference.

Kevin Pho: Now, when you’re talking about his clinicians, are we talking about his primary care physician? Are we talking about his oncologists? Tell me about how many physicians took care of him.

Carol Ewig: Oh, he had about one per everything, all right? The ones that really became close were, first, the surgeon who did his initial operation. They used to write letters. He retired. And Dr. Robos at New York Hospital-Cornell, who treated him for his CML, which is the difficult one. He had CML. So in the middle of everything, the other cancer is gone, before he had the problems with his breathing and his heart, he had CML.

And you would just sit in her office, and we knew how busy she was. In fact, my daughter did a little internship thing with her at one point during her medical school training and saw how busy she was. But when you sat with that woman, that physician, you had no idea that she had another patient in the world. You know, it was her and them. And you know, to the point where my mother, she has the CLL, wants to visit her. She wants to visit Dr. Robos, not because she really needs it, everything’s been stable, but because she feels like she’s family to her. It’s those kinds of treatments.

Yes, he had a good internist, but I would say the main people, the most amazing, was the first surgeon. And apparently, the surgery that he did had not been done. He was always, he did a lot of new things. They lived in Brooklyn, and so New York was their place to go for all their medical care. When they went to Jersey, they still did a lot there, you know, all their doctors were there and so on. So they did a lot there. But the sense of this doctor, of being just there for them and being so caring for them and just treating them, you know, incredibly well, it just made the difference.

So that one, and Dr. Clark, who had to be, I mentioned another name. He was a surgeon, and I don’t know, I think it was New York Hospital, I’m pretty sure. My understanding is he didn’t know, there was something about the surgery that was very unusual. The woman who was a pioneer had retired and was living in another part of the country, and she basically walked him through the surgery that he did. And he did it. And again, there was this kindness.

All right, so to me, it is, and again, you know, I know most of the people that you work with, of course, are all clinicians. But I think, just think about their family members and the things that you can do to make people, you know, be full human beings to the best they can in their lives. So those were some of the doctors.

Kevin Pho: Now, those two physicians in particular that you mentioned, who had that impact on your father, how long did they care for him? How long was your relationship?

Carol Ewig: So Dr. Clark, I’m pretty sure, and I can’t swear, my mother was writing letters for a long time, my father and mother. I think he may not be alive now, so then I’m not sure. But the period was only a few, two years, because he got diagnosed, the first surgery, then there was a second surgery, all right, and then he really just had to be followed up. So it was only a few years, sure, for him.

Dr. Robos, it has been a number of years now, because he had gotten, I would say, back. But he died seven years ago, and we still are in contact with her, but my mother is followed by her. So I would say it would probably be about five to eight years before that, and for about as long as he lived, from the time they met.

Kevin Pho: We’re talking to Carol Ewig. She’s a retired teacher. She wrote the KevinMD article “A story of a good death.” Carol, if you were to distill one characteristic that these physicians had that positively influenced your father’s death, what would that one characteristic or trait be? Because we have a lot of physicians who are listening to this podcast, and we certainly want to know what’s that one thing that had the greatest impact.

Carol Ewig: Right. It’s hard to distill, but I would say feeling that you’re being seen as an individual, not just a gown, not just someone on a table. Remembering that, I know how, believe me, again, I have family members in these professions. I know what the requirements are. I know how people are pushing. I know how hospitals are pushing. But always saying to yourself, maybe just before you start, you know, “This is an individual. This is a person.” I think about a family member.

One doctor actually once said to my father, he found, he was a little bit abrasive, let’s just say, the type of person that he was. But he said to my father, he saw him the first time, he walked over to him, and he said, “You remind me of my father.” And so he did treat him that way. I don’t know if he treated all those patients that way, but he did. But that’s how, let those patients remind you of your father or your mother or your sister or your brother or a child, you know? And then I think it would help.

I have to say, we’ve had very good experiences with all sorts of physicians, and within my own family, my children. I am not myself feeling like I’ve had a terrible situation. But it’s something that sometimes it helps to remember, I think.

Kevin Pho: And my final question, what are some of your take-home messages that you want to leave with the KevinMD audience?

Carol Ewig: I guess it would be somewhat along those same lines: Be aware of those people who don’t know what you know. Because the other part is, and I know physicians try not to talk in totally clinical language, but sometimes it happens anyway, and it’s really hard.

So I think one of the doctors, this was from my mother, she was getting ready for a hip replacement, and she was having a lot of pain. She was a little reluctant to do it. And I just loved the way he showed us the X-rays there and walked through all the little spots, and then kind of stopped and asked for questions. “Do you see this versus do you see that? And this one is not how it looked. Do you see that little piece over here?” And he made it just so obvious. It still was hard to get her to do the hip surgery, because she was nervous, but she did ultimately do it. But it was just so striking. “Well, there it is. You can see this hip. You can see that hip. This is not a normal hip.”

You know, and that’s what I think it is, just to, you know, work with the jargon, again, you know, distill that, use as little as you can, and think about the person who is scared. And obviously, we always like to bring someone along if we can, you know, but not everyone can. And I do like now that we get a written report, the takeaways, and we can sort of peruse that after. But just that one-on-one kind of contact, and try to stay away from just typing on the machines like that. That one could be hard too.

Kevin Pho: Carol, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Carol Ewig: Thank you.

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