Buenos Días: A Letter to My Patient's Mother

Listen to ASCO's Journal of Clinical Oncology essay, "Buenos Días: A Letter to My Patient's Mother," by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. The essay is followed by an interview with Ruiz and host Dr. Lidia Schapira. Ruiz shares a poignant story of a pediatric oncology immigrant family, social determinants of health and similarities to her own family's experience.

TRANSCRIPT

Dear Gabriela,

"Buenos dias," we said to each other in the pediatric intensive care unit. It was July of my first year of fellowship, and I was meeting you for the first time. From the start, you were there as a family unit, you and your husband supporting your two sons and each other. You were not new to the health care system or to pediatric oncology. But this was the first time you encountered a Latina, Spanish-speaking oncologist. When you heard me speak Spanish, I saw the relief in your eyes, a relief that I had seen before with my previous Spanish-speaking families. An immediate rapport was struck, fortified by our common language, cultivating an environment of trust. It stirred memories of the numerous instances when I accompanied my chronically ill grandfather to his medical appointments, often assuming the role of a medical interpreter for his care team and yearning for such a connection.

I learned that your son had recently completed therapy for his first cancer, and because he (and your family) has a genetic predisposition to cancer, he required surveillance scans. That summer, his whole-body magnetic resonance imaging picked up an asymptomatic brain tumor.

So, our lives became intertwined and I became your son's pediatric oncology fellow. I would never imagine the events that would follow in the next 4 years.

I couldn't help but notice the similarities between our families. My family also immigrated from Mexico to the United States in search of better economic opportunities. They too primarily spoke Spanish and worked manual labor jobs earning minimum wage. They too had a genetic predisposition to a chronic disease (although not cancer), and because of this, they too saw multiple family members die at a young age.

You told me about your brother who died in his 20s from cancer and how your father had a similar fate in his early 50s. Back then you didn't know that your family had a cancer predisposition.

Perhaps the local hospital in Mexico where your family was treated didn't have the genetic tests, or maybe your family could not afford such tests. I never asked you. My maternal great grandfather also didn't know why he had end-stage renal disease at a young age in rural Mexico. Even if the local hospital did have the tests, my family could not afford them. Just like your family, it was here in the United States that my family uncovered our own genetic predisposition, but, in our case, it was to kidney disease. Sadly, knowing the root cause did not prevent early deaths.

You told me about the events that led to your son's first cancer diagnosis. He was having leg pain and was about to turn 2 years old. You went to his pediatrician for a sick visit and routine vaccines. His leg pain worsened after the vaccines. Scans were ordered and unfortunately showed a tumor. You shared how in your mind the vaccines and the cancer were linked and how you worried about future vaccines. I listened to your worries and explained that vaccines did not cause his cancer. This reminded me of conversations I had with my own mother and aunts who would ask me medical questions: was it normal for a healthy young adult to have hypertension?

What are kidney cysts? These early family experiences ingrained in me the importance of communicating in plain language and the responsibility we have as physicians of educating our patients and their families. I would later learn in my medical training that not all physicians learned these communication skills or prioritized them.

Your worst nightmare came true when we found his second tumor, this time in his brain. You and your family prayed that it was a benign tumor relying on your deep faith in God. So, when I broke the news that it was a malignant tumor, it was far from a buen diıa for your family. Your son had a quick postoperative recovery, and we made plans that I would see him in clinic the following week to discuss his treatment plan.

"Buenos dias," you said to me in clinic. You were there again as a family unit, both you and your two boys. We discussed the treatment plan in Spanish, and you asked thoughtful questions about the chemotherapies he would receive. I was impressed that you remembered side effects of medications from his previous treatment and that you learned to use the patient portal on your phone. I also noticed how you had mastered enough English to communicate simple things with the nurse or with the physical therapist, but you preferred to speak to me in Spanish. You son was well plugged into our large pediatric academic medical center and all the support that came with it. Our nurse navigators helped you coordinate multispecialty appointments. But I was acutely aware of what another subspeciality appointment meant: another day off work for your husband without pay, or if he did go to work, it meant you had to figure out transportation as you did not know how to drive, challenges my own family members experienced.

So, we started outpatient treatment, and I saw you on a weekly basis. Your son tolerated his therapy exceptionally well and continued to have many buenos dias that you were grateful for. In between updating me on how your son was doing at home, your husband would lovingly tease you and make light of what I am sure was a very stressful situation. Your older son would also come to the appointments, and at one point, we ended up talking about school and going to college. I shared with him that I was the first one in my family to become a doctor and how important it was to work hard in school now, so later on, he could apply for scholarships, and one day, he could be the first in his family to go to college. I told him, "If I can do it, you can do it too." I could see his excitement in his eyes. At the end of clinic, you ended with "Muchas gracias doctora."

Six months later, your son completed his therapy and began surveillance scans. You shared with me your anxieties around these scans. I tried my best to normalize your feelings. Thankfully, your son's scans continued to be negative for tumors and he continued to have good days. Every so often I would remind you about the importance of your own surveillance scans and you would nod your head. This was not new to me as I had taken on the role of reminding my siblings and cousins to schedule their annual health visits and have screening tests for kidney disease given our family history.

A year and a half went by, and then during one of our routine visits, you told me that you were not doing well and that, in fact, you were having malos dias. I asked you what was going on, and you told me how you had gone to your local community hospital for abdominal pain and had been diagnosed with stage 4 pancreatic cancer. I was shocked. After updating me on your son and how well he was doing, you asked me a question that stayed with me, a question that my own family members had asked me before: "What is the prognosis for this?" You caught me off guard. I turned the question back to you and asked you what your oncologist had told you. You said they hadn't given you numbers and that you understood that a higher stage was bad. You looked at me with pleading eyes. I told you how my specialty was children with cancer and that I did not know the numbers for adult cancers. I encouraged you to talk with your oncologist more about this. Although this was during the first year of the pandemic, I gave you a hug. Although I didn't say it out loud, we both knew this was not going to end well.

I called you the following week to check on you. I asked if you wanted my help to get a second opinion at the academic adult hospital next door. You explained that you were about to start therapy at your community hospital and that since you didn't have health insurance because of your undocumented status, you didn't want to pursue a second opinion at this time. I told you that if you changed your mind, I would be happy to help.

I didn't hear from you for several weeks, and then I got a notification that your son had multiple emergency department (ED) visits. In his electronic medical record, I read that it was your husband who had brought him in for vomiting. I read in a note that your husband had told the ED team that you had recently died. I was in shock. I cried for your sons who were left without a mother and for your husband who would now have to learn to navigate the medical system by himself.

Two weeks later, I saw your sons and your husband for what I thought was going to be a routine visit. I was shocked when your husband told me that child protective services had been called on them by the hospital social worker. He told me the story that instigated this call. Your older son, now a teen, was struggling to deal with your death. One afternoon, your husband asked him to take out the trash and your son had an emotional outburst and said some disrespectful things to your husband. Your husband reacted quickly and flicked your son's cheek. This story was shared by your older son to the social worker who made the report. My shock turned into anger, and I did my best to stay composed in front of him and your sons. I understood your husband's reaction, as respect to parents is a core value in Mexican culture.1 I wondered if the social worker understood this. Before I left the examination room, I told your husband that the medical system can be biased and warned him to be careful and know his rights. For my own extended family had experience with child protective services, several years back my young aunt, a first-time mom, lost custody of my infant cousin after an unwitnessed fall that resulted in brain injury. I wondered if the outcomes would have been different if she was white, wealthy, and well-educated. I would later learn in my medical education the disproportionality in reporting by race and ethnicity.2

Once back in the work room, I cried sad and angry tears. Sad that your husband had to go through this process and the added stress after the recent trauma of your death. Angry that I, the physician with the longest continuity with your family, the physician who spoke your primary language and understood your culture, was not notified before the reporting. Angry also that this system was yet again failing our most vulnerable populations. Knowing that when resources are limited, it is low-income, non–English-speaking families that usually get neglected first. Child protective services investigated and concluded that no major action was warranted.

Thankfully, your son's surveillance scans continued to be negative. In the next couple of months, your husband learned to navigate the clinics, the ED, and the hospital. Unfortunately, language barriers made this navigation stressful, and more than once, miscommunication with ED doctors increased his anxiety about the possibility of recurrence for your son. I reiterated to him to call our clinic with any question, saying that I'd rather we answer his questions instead of having him worry weeks on end at home.

Several more months passed, and your son was due for surveillance scans again. I got a call from the social worker that day notifying me that your son came with his uncle to his scan appointments because your husband was admitted in the hospital and that there was concern for cancer. This was completely unexpected as your husband was not the one with the family history of cancer. I called your husband later that day to give him the results of your son's scans (negative for recurrence and negative for new tumors) and to ask about his health. He told me of the weight loss and abdominal pain. He went to the same community hospital where you had gone and had scans that showed a mass in the colon. He told me he was about to be discharged and insisted on keeping your son's clinic appointment with me the following week as he wanted his son's g-tube checked. At the time, it seemed strange tome that he was hyper-focused on the g-tube instead of focusing on his own health, but in retrospect, I think the g-tube was something he could control during a chaotic time.

I saw your two boys and your husband in the clinic the following week. I was shocked to see how your husband looked compared with our last visit 6 months ago. He was in a wheelchair, had lost a significant amount of weight, and looked like he had aged 10 years.

He told me how his son, my patient, continued to do well. He was worried the g-tube was irritating him more. We ended up exchanging the size as he had outgrown the previous one. Then, he told me about his health, that the biopsy results were still pending, and that he understood the mass was localized. He shared how the preliminary diagnosis of cancer was disclosed to him: the doctor came in the room and abruptly said it was cancer in front of your older son without a warning. My heart broke when I heard this. Your older son lost you to cancer less than a year ago, saw his brother undergo treatment for two separate cancers, and saw his cousin lose his fight to cancer. He didn't deserve this. I held back tears, and I apologized for the fact that his family had to experience this poor disclosure. I worried about the care he was receiving at the community hospital, knowing cancer is the leading cause of death for Latinos in the United States and that social determinants of health have a role in this.3 I knew the odds were stacked against him. I reminded him that he has rights, including having an interpreter when talking to the medical team.

Then, he said something that took me by surprise, "I need to get my affairs in order." I felt this was premature and also felt helpless as I desperately wanted to help your family. I told him he didn't know all the information yet, and if the cancer is localized, then the chance of cure is higher. He nodded his head. I asked if we could provide assistance in any way, such as coverage for transportation, but he declined this offer. At the end of the visit, he said "Muchas gracias doctora." At home, I cried for your family and questioned how one family could be so unlucky.

I called your husband on a weekly basis for the next 2 weeks to check on him. I then went on service and was too busy to call, but the following week, I got an e-mail from the oncology psychologist stating your son and your husband missed a telehealth visit, adding no one answered the phone when she called. I replied that I had not spoken to your husband in over a week. A couple of days later, I got a call from your son's social worker, one of the Spanish interpreters had found out via Facebook that your husband had died. Almost a year after you died. I cried.

I went to your husband's funeral. I cried for your boys who lost both parents in the span of a year. It was comforting to see that you had a lot of friends in the community who cared about your family. It was also comforting to hear that your cousin agreed to take in the boys.

Gabriela, you and your husband did a phenomenal job raising your boys especially with the two cancer diagnoses of your younger son. Your son, my patient, was always happy in clinic, and that spoke volumes to the type of environment you created for him at home. Despite the complexity of navigating a large academic medical center, you did it with such poise. You were an extraordinary mother.

Was it fate that our lives became intertwined so early in my fellowship training? Latino physicians in general are underrepresented in medicine,4 and the same is true for Latino oncologists in academic medicine.5 So, it was an honor and privilege for me to be your son's doctora. Throughout our encounters, I thought about how I would want my own extended family to be treated by their medical team, and I did my best to communicate, educate, and advocate for your son and your family. Your family reminded me of barriers low-income, immigrant, Spanish-speaking families face as they navigate the

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. In this episode, we will be discussing her Art of Oncology article "Buenos Dias: A Letter to My Patient's Mother."

At the time of this recording, our guest has no disclosures.

Jenny, welcome to our podcast and thank you for joining us.

Dr. Jenny Ruiz: Thank you so much for having me here. It's truly a privilege.

Dr. Lidia Schapira: It's our pleasure. So, Jenny, I like to start by asking our authors what it is that they're reading now.

Dr. Jenny Ruiz: Yeah. So I'm currently reading Lean In by Sheryl Sandberg as I'm new to a transition to a new institution.

Dr. Lidia Schapira: Doesn't sound like a lot of fun, but I hope that it's useful.

So let's talk a little bit about your work. What made you choose a career in pediatric oncology?

Dr. Jenny Ruiz: I think my decision to go into medicine has stemmed from my extended family's interaction with the medical field. At the age of 18, I decided to be premed because I had an encounter with my grandfather, taking him to his clinic appointments after his kidney transplant and being asked by the doctor to interpret for him. I was at that time 17 or 18, and I thought it was a very interesting question that they were asking me. I didn't really think my grandfather would be telling me, his granddaughter, all his personal medical symptoms to then tell the doctor.

Dr. Lidia Schapira: It's a huge responsibility that's often, I'm going to say, inflicted on children, and especially in this case, with your grandfather. You talk very candidly and openly about being in a family where there was a genetic susceptibility to disease other than cancer and your solidarity with your patient and their family for being an immigrant community and having this. Tell us a little bit about the years that you lived with the story. You cared for this child for many years before sharing the story so openly. Tell us about that.

Dr. Jenny Ruiz: Yeah. I met this family my first year in the first month of my fellowship four years ago. At the beginning, he was doing so well. I mean, it was unfortunate he had a second diagnosis of cancer, but he did exceptionally well in the outpatient setting, really not having any admissions for all of that. And it was just beautiful to have that relationship with the parents, being able to speak the same language, being able to understand the culture, and seeing them kind of go through this all over again and seeing a little boy grow up.

And it wasn't really until the last two years that a lot of the incidents that I describe in the story started happening. And so it definitely was a lot to kind of process it with the family as they themselves were going through all the trauma of having the parents diagnosed with cancer. And I think it definitely did take me a while to even after all of that, to put it down in the story and writing it down. I found myself oftentimes kind of writing a little part of the story and having to pause because of all the emotions coming back. And so I think I did that a couple of times across the country, across the world, honestly, little paragraphs here and there.

Dr. Lidia Schapira: That's so interesting. Assuming, maybe reading into this, that telling the story, writing the story, helped you process something that was very personal, very challenging. Can we talk a little bit about this issue of language? You said that you've seen this look of relief on patients' faces when they realize that you speak Spanish and that you can communicate with them, Spanish in this case being the language that binds you to the patient. Tell us a little bit about that, how you view language and speaking the same language as your patient and their family.

Dr. Jenny Ruiz: Yeah, I think we often take for granted that we're able to communicate with our doctors, our medical team, in our primary language. And it's very easy to overlook that there's a lot of immigrants in this country who don't have that luxury of being able to speak to their medical team in their preferred language. So I think one of the main drivers for me to go into medicine is to be able to connect with these families who speak Spanish, knowing that Spanish is my first language, and be able to really communicate in a plain language and explain it to them in a way that they understand and for it to be much easier to then see if they truly understand and check for understanding. I think in pediatric oncology especially, it's a very stressful time to be told that your child might have cancer and to be able to have that conversation in your preferred language, I think takes a lot of that stress away.

Dr. Lidia Schapira: You talk about the fact that patients often feel relief and that it's easier to build rapport and trust, but I think there is something else that perhaps I read into or I wanted to read into it, which was warmth. I think that it's easier to convey that warmth or to understand each other a little bit better when there's concordance in language. So do you find yourself being assigned more of the Spanish speaking families as a result of your ability to communicate?

Dr. Jenny Ruiz: I didn't really get that sense in fellowship. I mean, I think at one point they were asking for a volunteer from the fellows who needed to pick up another patient, and it just happened that the family spoke Spanish. I was like, "Of course!" I have found it very interesting in fellowship when I would be on call for some reason, every time or quite a few times that I was on call, it'd be a Spanish speaking family in the ED. And I loved going to talk to them. I might not be giving the best news to them, but the fact that somehow our timelines aligned and they would be in the ED, and I would be on call, and I would be that first physician to kind of talk about cancer with them.

Dr. Lidia Schapira: That's such a beautiful sentiment that you express there. And I wonder if you can tell us or teach us a little bit about how you feel when you work with an interpreter for a language or a culture that you don't understand. Just something that happens to all of us in a society that hopefully welcomes immigrant families.

Dr. Jenny Ruiz: Yeah, I mean, I think there's definitely a lot of skills to be taught in how to work with an interpreter. Again, using simple short sentences, positioning yourself as you are talking to the family, there's not going to be this three-way thing, trying to make that connection as much as possible. I think also noticing the unspoken words and the subtleties of the parent's face, the mom or the dad is very important, even with an interpreter, be like, oh, I noticed this. Is there something that you want to discuss more that made you do this?

Dr. Lidia Schapira: And even using an opportunity to debrief with interpreters to make sure that we got it right. In your case in pediatric oncology, I think communication is even more complicated because you have the parent and the child and the interpreter. So tell us a little bit about your experience working with families where kids maybe speak English much better than the parents. You still need to communicate with the parents. I think that adds more challenges.

Dr. Jenny Ruiz: Last year when I was a first year attending, I actually prepped a fellow with a talk with a Spanish speaking family with an interpreter. But the teenager's English was his primary language, so yes, he knew Spanish too, and the family wanted him to be involved in this discussion. So definitely a lot of more nuances there, a lot more emotions to be aware of, subtleties to be aware of, nonverbal communication that's happening. But I think honestly, we rely a lot on the parents to guide us in terms of: Do we want the child to be involved? How much information? Do we want to then say it differently for them at a later time or include them from the beginning? It's a lot of talking to the family and making sure that we are meeting their needs.

Dr. Lidia Schapira: So what I'm picking up from our conversation is that you seem to be very tuned into the emotional part of the work. Let me ask this question, and that is: How do you take care of your emotions in these situations where there's so much at stake?

Dr. Jenny Ruiz: Yeah, I mean, I think it definitely can be a very emotional career and certain instances can make it even more emotional and stressful. For me, it's been very important to have a very strong support system. I have my husband, I have my extended friends who are in the Northeast, have become another family for me. And I think, honestly, you know, prioritizing your mental health, whether that's doing your hobbies, whether that's going to therapy, have all been very important for me in this career.

Dr. Lidia Schapira: I am delighted to hear you say that you are taking time for yourself and looking for things outside of work. That said, let me turn back to the relationship you developed that you describe here with Gabriela, the mother of your patient to whom the letter is addressed. You talk a lot about feeling strongly when you felt there were injustices or when they didn't have the proper access. Tell us a little bit about what that relationship was like and what it's been like for you when you find yourself advocating for families.

Dr. Jenny Ruiz: Yeah, I think these strong feelings stem from seeing my family go through these same struggles and wanting the medical system to do better for immigrant families so they can have the best outcomes. I think oftentimes I find myself realizing I'm getting emotional or worked up and be like, okay, there's something going on here. I need to step back before I start talking to someone else about this, of what I want to happen or what I need to advocate for and really knowing that people will respond better if I stay calm and also kind of push back and in a professional way, ask questions, like, why is this happening? And if this is not our standard, why are we deviating from our standards?

Dr. Lidia Schapira: So I know this is an early moment in your career. I mean, you're an assistant professor and just in the second year of a new job. But how do you imagine that this interest and this advocacy that you're so good at and feel so strongly about is going to impact your career going forward?

Dr. Jenny Ruiz: I hope to continue to be a role model for trainees and faculty as I progress in my career, maybe I'll take on some leadership roles within the med school education system.

Dr. Lidia Schapira: As you imagine yourself teaching, leading, and modeling behaviors, what are the most important messages that you'd like to convey to your students or peers?

Dr. Jenny Ruiz: In pediatrics, at least ask the parents. Ask the family what language do they want to be communicated in for the medical information of their child? And then if it's not a language that you have been certified in to speak in, or are a fluent language native speaker, then get that interpreter. And then again the plain language and the short sentences.

Dr. Lidia Schapira: So the health literacy and language preference for you are sort of intertwined, so to speak. So I'm curious, does your institution routinely collect that information, and do you ask every patient their language preference?

Dr. Jenny Ruiz: I think there's definitely lots of room for improvement on how that information is being collected. I don't think it's being done in a systematic way. And hospitals are so large, everyone's doing it in different ways. When I was a fellow, I would be called from the emergency, say for cancer. I would always ask the emergency team, "Do they speak English, or am I going to need an interpreter for this?" And it's sad to say, to share that at one point they told me that the family spoke English and it went down there and then they're like, actually, no, English is not the primary language of them all. But we haven't been using an interpreter and I'm like, what is going on?

Dr. Lidia Schapira: Yeah, I think that unfortunately, we've all been witnesses to such moments and it's sort of time for our culture to get this right.

As we get towards the end of this lovely chat, let me ask if you've shared some of this with your family and how your role, perhaps as the early interpreter for your grandfather has evolved over these years in terms of your being at this position of being an expert now in medicine and perhaps a facilitator.

Dr. Jenny Ruiz: Yeah, I definitely have taken on a role with my siblings and my cousins, kind of telling them the things I see in medicine and telling them why it's important to go to your annual checkup to get those screening tests because too often we see too many people just die too early, when it could have been prevented or a medication could have started early. So I think I've definitely taken on that role within my extended family. I hope that they kind of trust me and that little trust can then slowly build into a trust with their own medical team.

Dr. Lidia Schapira: And if I may just dig a little bit more into this story, my last question is what did it feel like to go to the funeral for your patient's dad?

Dr. Jenny Ruiz: I never thought that I would be going to a funeral for a parent. I thought I was going to be going for the child with the field that I had chosen. So it was definitely unusual. I had a couple of family members also pass away during my fellowship years, so it was a lot of reflection of the things that my family went through, things I saw with this family, a lot of similarities. So it's definitely been a very unique story that I felt like I needed to get down on a paper and share because oftentimes we don't hear these stories.

Dr. Lidia Schapira: It was definitely a message that needed to come out. And we are so grateful to you for writing it, as you say, in little snippets in different times of your life from different locations. Thank you for that and thank you very much for agreeing to chat with me today.

Dr. Jenny Ruiz: Thank you.

Dr. Lidia Schapira: And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio:

Dr. Jenny Ruiz is an Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine.