Against All Odds

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But I insisted that we give him a chance and they answered me by saying he doesn't stand a chance.

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Hi, I'm Dr John Oden.

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This is Memoirs in Medicine, a podcast featuring the personal stories of healthcare professionals.

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And I'm Dr David Spiro.

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On each episode, one healthcare worker will share a moment from their career that has profoundly affected them and provide one suggestion, no matter how big or small, for improving the practice of medicine.

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Through storytelling, we hope to highlight the humanity in healthcare and create a space for candid and respectful discussion.

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To protect patient privacy.

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Some details may have been changed, but the stories are real.

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Welcome to Memoirs in Medicine.

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Here we are, another episode of Memoirs in Medicine, and I'm really excited.

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John, how are you doing today?

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Oh, David, I'm doing very well.

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Usually we have our guests introduce themselves, and I was introduced to Dr Mehta through some academic ties here at the University of Arkansas Medical Sciences Center, and so, dr Mehta, could you introduce yourself a little bit to our?

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audience and tell us a little bit about your background.

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Yes, First of all, I'm delighted to be here.

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I thank you both for inviting me and I thank the audience for listening.

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I am a pediatric hematologist oncologist by training and by experience.

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I have had a very long and rich and really very fulfilling career in pediatric hematology oncology and also adult and geriatric hematology oncology.

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So I've seen the gamut of pediatrics to adult to old age and found that very, very fulfilling.

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Wow.

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Actually it's very transferable and actually the first thing I noticed is how similar pediatrics and geriatrics is.

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The ends of life are actually very similar the frailty, the fragility, the bald hair, the bald heads, toothless faces, people using strollers.

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Wow, that's so interesting.

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That's interesting.

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Yeah, that's very interesting.

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So, dr Meda, do you want to tell us a little bit about a story that you want to tell and start sharing, and we'd love to learn about it.

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Memoirs in Medicine is really about telling a story and something that we can all learn from that story.

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Physicians all have stories that they want to share, and part of Memoirs in Medicine is a place and a space to do so.

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Thank you so much.

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And I agree, medicine is the practice of storytelling and story listening.

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People come with their bodies, their diseases, but they mostly come with their stories, and the extent to which we can integrate ourselves into their stories and help them heal from their stories portends a great deal about our effectiveness.

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So I hear stories all day, every day in my practice.

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One of the most striking stories in pediatrics that I heard was my story of a little boy, james not his real name and I wrote up his story for the Journal of Clinical Oncology and it's been quoted many, many times, been cited.

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But it's an amazing story because it was about a young boy must have been maybe 12, 13 years old who came to me with acute lymphoblastic lympholeukemia.

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This young man, this young boy, had everything against him, all the prognostic factors that you can count on your two hands.

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Every one of them said he was going to do very poorly.

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My colleagues said to me this is a child you probably don't want to treat.

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You can send him straight to palliative care.

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There's just no chance he's going to do well.

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But I insisted that we give him a chance and they answered me by saying he doesn't stand a chance.

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I said let's give him a chance and they answered me by saying he doesn't stand a chance.

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I said let's give him a chance and, against all the resistance from my colleagues and other people, I insisted that we treat him like we would treat a good prognosis patient.

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And what year was this?

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85-ish.

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Wow, between 80 and 85, 1980 to 1985.

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The prognosis would be better now.

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In those years the prognosis were not as good.

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So I put him through treatment and it was hard for him.

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He had every possible complication.

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He had infection after infection.

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He was in the ICU, he had respiratory compromise, but he managed to get through wave after wave after wave and finally eventually after three years he had been in complete, continuous remission.

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For three years and we call that a cure, or as close to a cure as we allow ourselves to use the word.

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And I didn't see him or hear from him for at least the next 10 years.

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When I was shopping in a store I was actually sending my kids off to college and I was doing some clothing shopping for them to send them off and I recognized the lady, the woman, the mother.

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I recognized her.

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She hadn't changed a bit and we just hugged each other and I was afraid to ask.

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I was so afraid to ask how was your son?

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Because I was sure he probably had had problems and maybe wasn't even alive.

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But she came right out and she said Dr Maida, you did such a good job.

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And she screamed across the mall James, get over here right now and say hello to your doctor.

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It was really funny.

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And he came, but he didn't come by himself.

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He came with three little children who themselves were beginning to grow up at about that time.

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I told the mother at that time I didn't think he would still be alive, and she said to me you never told me that, you never told me he wasn't going to make it or he didn't stand a chance.

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And I said of course I didn't tell you, you never would have let me do those things to him.

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And she just wept, just wept in my shoulders and it taught me the power of hope.

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She was hopeful that he was going to live.

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She was hopeful he would get through it.

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She didn't give up for a second.

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She came for every single appointment.

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They were totally compliant.

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It taught me the power of hope and I felt so proud at that moment that I had given him hope.

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I hadn't taken away the hope that he had, that I had in him and that the mother had in him.

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That was probably the most pivotal story of my career.

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Yeah, that's a.

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That's a really, really cool story.

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And you know, when I was a resident, I had a great mentor who was a hematologist, oncologist.

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I loved her, taught me a lot about the body and how to you know, take histories and all that kind of good stuff, but I could never do what she did.

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I could never do what you do, because the heartbreak that hematology, oncology, tends to envelop was just not for me and that's why I went into endocrine.

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Endocrine is, you know, it's diabetes, it's thyroid, it's short stature.

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These are mostly treatable diseases and, yes, we have some heartbreak in ours, but nothing like that.

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So my hat is off to you.

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Of course, you know, the outcome for most kids with cancer is much better than it used to be, and it's actually quite good.

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What I tell my parents sometimes is that when the good.

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What I tell my parents sometimes is that when the sky is darkest, the stars shine the brightest.

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You know, everything was a celebration the first hair coming back, the first day at school, the first remission.

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Those were such joyous days of celebration.

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I never celebrated as much as I did in the pediatrics wards.

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I had a question.

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So when you were at that moment because sometimes when there are difficult cases and I don't know if this case was a situation where oftentimes in the oncologic world there are tumor review boards or there are meetings to discuss difficult cases amongst colleagues what came about inside of you that decided, yes, we're going to treat this patient and I'm not going to go with the rest of the crowd that's saying we need to give up or just support his pain and let him pass peacefully, rather than putting anyone through the anguish of chemotherapy.

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Right.

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That's such an important point because we work in teams and whatever I do to my patient is not by me alone.

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I count on my colleagues to carry the load with me.

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So to give them an unfair load is an unfair proposition.

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I just felt so strongly that he needed a chance.

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I really went against the grain of most of my colleagues.

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Did you have a gut feeling about it?

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Did you have something viscerally inside of you that told you to do this?

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Was it a spiritual guide?

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What actually inside of you told you to do this?

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Was it a spiritual guide?

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What, what, what actually inside of you told you to go against the grain of your colleagues?

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I'm just curious part of it was spiritual.

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He was a child.

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A child deserves a chance.

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A child who hasn't lived at his potential, hasn't seen, you know, anything, really hasn't experienced life.

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Part of it was that.

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Part of it was naivety that I thought I could do it.

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Part of it was arrogance that I thought I could do it.

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I felt powerful with all my armamentarian in place.

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And part of it was the mother.

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I think that maybe is the thing.

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The mother, I think, was a driving force.

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I remember now she telling me he was her whole life.

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She had no other children.

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He was the one she lived for him.

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If anything happened to him, her life would be over.

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I think it was the impact on the mother that moved me the most.

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Right, yeah, that makes sense moved me the most.

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Right, yeah, that makes sense.

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And then of course, it was data to back up that 20% of kids in this setting would do well, and 20% is a very big chance.

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People would do a lot more for a lot less chance.

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If somebody wanted to fight and only had a 20% chance quote unquote only I would fight with him.

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Maybe less than 1%, you know, convince the person not to do it.

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But 20% seemed like a pretty big number to me at the time.

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Well, that had to have taken a lot of courage, because you not only had to convince this family to go through the process of chemotherapy and hospitalizations and complications that they were going to go through, but you had to convince your colleagues, which I know by experience and we're just talking about starting growth hormone or what dose of insulin to use.

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But that can be a challenging area to overcome, right?

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So just for some perspective, you said 20% was this kiddo's possibility of long-term survival At that time.

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What was the average percentage that we're talking about?

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For low-risk ALL the chances were more like 80% long-term survival.

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Oh, wow, wow, Wow.

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There were lots of opportunities at any point to say this is too much.

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I didn't feel like I was committing a life and death sentence at that moment.

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I felt like if it didn't work, there would be time enough later on to talk about palliative care then and even now, when the likelihood is one in five of survival, do you share?

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that data with your families that you work with.

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I don't spontaneously share that data, but most will ask what are my chances and I'll give them.

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I don't give numbers because numbers aren't right.

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Really there's only two numbers zero or 100.

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You will live or you will not.

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But I give estimates in terms of life expectancy, in terms of months, years, decades.

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So I make it as general as possible and I narrow it down by patient preference.

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Most patients want to know, but not know too much.

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I try to tell it slant.

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I try to tell the truth but from an angle so that they can handle it, not straight in your face so that it destroys you, because it takes time.

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In oncology you have so much time with families, you become a family member.

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There's time enough to tell it more and more and more as time goes on, as things declare themselves.

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But I will work with the family according to what the family wishes and needs.

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And some families have had enough after X number of years and it's time to let go.

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And other families, you know, they're just not ready.

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There is a spiritual force in nature that declares itself when the time is ready.

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People know.

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The time is ready, people know.

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What do you think families in your tremendous career that you've had?

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It seems to me that families, as an ER physician, worry oftentimes in the emergency department about pain and suffering.

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But in your field you're actually dealing with pain and suffering which you actually in some ways deliver to children because they have to go through noxious things such as chemotherapy to actually get them to live.

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And then there's death.

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Is there a sense?

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Do you have a sense that families are more worried that their child is going to pass away, or do you think that families are most worried about the pain and suffering their child will go through?

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Well, pain and suffering everybody is afraid of, but that you can pretty much reassure families that there will not be any excess pain, a little bit of pain.

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The best treatment for pain in hematology, oncology, is chemotherapy.

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That is the best treatment.

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The pain begins to subside as soon as the disease begins to melt.

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So that is an argument for chemotherapy.

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Most of the time you will have less pain if the disease remits, and with chemotherapy your chances are better.

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Of course, now there are lots of cancers that are no longer treated with chemotherapy.

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Now immunotherapy and targeted therapy can replace chemotherapy, so we're becoming past the point of only using chemotherapy.

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Pain and suffering is certainly the first thing that people think about.

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I think we can reassure people about pain.

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Suffering is a spiritual issue and there we need to work as a team to involve our psychologists and palliative care and chaplain people to help us out with.

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And death, of course.

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Death in a child is so terribly unfair and unjust that anyone have trouble comprehending that.

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It feels like for both of your subspecialties mine to some degree, but definitely with pediatric oncology and pediatric endocrinology over the last 50 years there's been such tremendous advancements in the field that there would be a system I think that's available now, john that you can actually monitor your glucose and then smart monitor your glucose and then have insulin delivered as a result of continuous measurement of your glucose, almost like an artificial pancreas.

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Does that exist?

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now it does.

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From a certain perspective it does.

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They're called closed-loop systems.

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They're not exactly artificial pancreas, but they do function a lot more smartly than your average pancreas.

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But you're absolutely right.

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I think the technology in all forms of medicine has advanced quite readily and it's an exciting time to be in medicine.

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I will say that it's also a very complicated time to be in medicine I will say that it's also a very complicated time to be in medicine.

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So it's one of those things where you really want to get everybody all these new techs but unfortunately our insurance companies sometimes they won't pay for them.

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It's, it's an issue so.

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So, to summarize this conversation, I I my senses is that the purpose or the intention around this was mostly around the idea that hope is real, uh in in medicine, and hope is such an important emotion to have in terms of getting someone therapy and, in this case, saving this child's life.

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It seems like hope was integral into saving this child's life.

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Yes, that is precisely what I feel.

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But the most poignant thing I think you said was this suffering was spiritual.

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I think that's very true and you may get rid of all the pain you may, you may make kiddos well and send them home, but there's still that that little bit of angst and suffering that families will go through, no matter what they've not they've done.

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They've interacted with somebody about their child's health, and that worry right because it doesn't make sense, right.

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It's hard to put it together with a good universe and with the concept of God.

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Yeah, and we see that every day and we see that every day and I think we don't recognize it and we certainly can't treat it in families that are kind of spinning in this whirlpool of you know, my child got sick.

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I don't know why my child got sick.

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I think my child is still sick, but I don't know why.

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That's a very important point that people physicians, caregivers, nurse practitioners need to really kind of understand when they're interfacing with families that really are kind of spinning their wheels and not understanding what's going on with their child's health.

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Right, I agree.

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Well, Dr Mehta, I just want to say what an honor and privilege it is to have you on our show and it was such an incredible learning experience for me and real honor to have you on our program.

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It was a great experience, thank you.

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Oh, thank you, it's my pleasure.

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I just want to perhaps close the loop by saying that the experience and the success of HOPE was so powerful, it gave such a powerful lesson to me that when I came to the VA and I became director of hematology oncology at the VA hospital in 2000.

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When the first thing I did was to rename the cancer ward the hope unit, also meaning hematology, oncology, palliation, education, we did it all and hope.

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Just even the name change, change the whole spirit of the ward into a place where everybody had hope.

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Well, I you know, then I have to say I congratulate you for what you have done.

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The reputation of your group is incredible and I know it's one of the very few centers that actually takes care of these patients.

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So congratulations and thank you.

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Thank you.

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Thank you so much and good luck to you and your work.

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I think you're doing wonderful work, so interesting and it's so empowering.

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Visit memoirsinmedicinecom to learn more about this program.

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Against All Odds

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