The pediatric palliative care nurse’s communication challenge
The pediatric palliative care nurse works in a specialty where the communication task is not simply explaining a disease mechanism but helping a family hold two realities simultaneously: the reality of who their child is and what they mean to the people who love them, and the reality of what their child’s biology makes possible and impossible. These two realities do not cancel each other out. They coexist. The nurse’s job is to make sure the family can see both clearly enough to make decisions aligned with their own values rather than decisions driven by misunderstanding.
Three recurring communication failures define the pediatric palliative care context with particular frequency.
The first is the treatment-that-cannot-cure paradox. A family hears that a tumor cannot be surgically removed and cannot be cured with current therapies, and then they are told that the recommended treatment — radiation — also cannot cure it. They hear this as the medical team has given up and is managing symptoms instead of fighting the disease. The nurse must explain that “treatment” and “cure” are not the same word, and that in diffuse intrinsic pontine glioma they are separated by an anatomical reality that no surgeon can circumvent: the tumor is in the brainstem, and the brainstem cannot be resected.
The second is the comfort-care-means-giving-up confusion. When a family hears that the palliative care team is involved and that a comfort-focused approach is being presented alongside aggressive intervention, many families — particularly families from cultural backgrounds where fighting for a child is a profound moral obligation — interpret this as the medical team recommending against treatment, doubting the child’s worth, or pressuring the family toward a path they did not choose. The nurse must separate the presentation of an option from a recommendation, and explain what palliative care involvement actually means alongside any treatment path.
The third is the opioid tolerance and addiction confusion. When a dying child’s pain medication dose is increased repeatedly over weeks, families who are aware of the opioid crisis and who have been taught to be vigilant about opioid dependence can develop intense fear that their child is being made into an addict in the last weeks of life. This fear can cause them to advocate for inadequate pain control. The nurse must provide a clear and scientifically accurate distinction between two entirely different phenomena: the pharmacological receptor adaptation that drives dose escalation, and the behavioral compulsion that defines addiction.
Three conversations from the pediatric palliative care context:
Scenario 1: Lucas Vargas-Morales — 7 years old, Houston, Texas
Lucas Vargas-Morales had been a healthy, active second-grader at an elementary school in Houston’s East End until five weeks before the family came to Texas Children’s Hospital. His parents had noticed a slight droop on the left side of his face and attributed it to sleeping on that side. Two weeks later, Lucas began complaining that he was seeing double when he looked to the right, and he started tripping more than usual on the left stairs of their house. His pediatrician referred him immediately to neurology. The MRI showed what the radiologist described as a T2 expansile hyperintense mass occupying approximately 80 percent of the pons with a small dorsal exophytic component — a finding the neurologist told the family was consistent with a diffuse intrinsic pontine glioma. Biopsy at the request of the neuro-oncology team confirmed H3K27M-mutant diffuse midline glioma, WHO grade 4. The tumor was not amenable to surgical resection. The oncology team recommended conventional fractionated radiation therapy at 54 Gray in 30 fractions.
Raúl Vargas, a warehouse supervisor who had managed supply chains for eighteen years, sat in the consultation room with his wife Elena Morales, a bank teller, on either side of Lucas, who was drawing a truck on the back of his intake paperwork with a pen he had found on the table. Pediatric palliative care nurse Marisol Fuentes-Castro sat across from them. The oncology attending had explained the diagnosis and the radiation recommendation. Marisol was there to help with the questions that came after.
“Le agradecemos todo lo que me explicó el doctor,” Raúl began. He had his arms crossed, not in resistance but in the way of a man who held things in when he was trying to understand them. “Pero no entiendo una cosa. Me dijeron que el tumor no se puede operar. Me dijeron que la radiación no puede curar el tumor. Entonces, ¿qué es lo que estamos haciendo? ¿Por qué le vamos a dar radiación a Lucas si ustedes mismos dicen que no lo va a curar? Se siente como si nos dijeran que ya se rindieron con él.” (We appreciate everything the doctor explained to me. But I don’t understand one thing. They told me the tumor cannot be operated on. They told me radiation cannot cure the tumor. So what are we doing? Why are we going to give Lucas radiation if you yourselves say it will not cure him? It feels like you are telling us you have already given up on him.)
Elena had her hand on Lucas’s shoulder. Lucas was drawing a second truck.
Marisol understood what Raúl was actually asking. He was not asking for a pharmacology lecture. He was asking whether his son still had people in his corner.
“No nos hemos rendido,” she said. “Y lo que le voy a explicar es por qué la radiación importa — qué hace en el cuerpo de Lucas específicamente, por qué la operación no es posible, y qué significa para el tiempo que Lucas va a tener.” (We have not given up. And what I am going to explain is why radiation matters — what it does in Lucas’s body specifically, why surgery is not possible, and what it means for the time Lucas is going to have.)
“El tumor de Lucas está en el puente — el ‘pons’ en inglés. El puente es una parte del tronco cerebral que está justo en el centro del cerebro, entre el cerebro principal arriba y la médula espinal abajo. Si uno pudiera ver el tronco cerebral, el puente es la sección del medio, la más ancha. Dentro de esa estructura viven los núcleos — los grupos de neuronas — que controlan la mayoría de los nervios de la cara y la cabeza: el nervio que mueve los ojos hacia los lados, el nervio que controla los músculos de la cara, el nervio que controla la audición y el equilibrio. También pasan por ahí los tractos que llevan las señales del cerebro a la médula espinal para mover los brazos, las piernas, y el tronco. Y en el centro del puente está la formación reticular — el sistema de neuronas que regula el ritmo de la respiración y del corazón.” (Lucas’s tumor is in the pons — the ‘bridge.’ The pons is a section of the brainstem located right in the center of the brain, between the main brain above and the spinal cord below. If one could see the brainstem, the pons is the middle section, the widest one. Inside that structure live the nuclei — the groups of neurons — that control most of the nerves of the face and head: the nerve that moves the eyes to the side, the nerve that controls the muscles of the face, the nerve that controls hearing and balance. The tracts that carry signals from the brain to the spinal cord to move the arms, legs, and trunk also pass through there. And in the center of the pons is the reticular formation — the system of neurons that regulates the rhythm of breathing and the heart.)
Raúl was watching her steadily. Lucas had set down the pen.
“El tumor de Lucas no se formó al lado de esas estructuras — se formó dentro de ellas. Se llama ‘difuso’ porque está mezclado con el tejido normal del puente. Las células del tumor están entretejidas con las neuronas que controlan la respiración de Lucas, el ritmo de su corazón, los nervios de su cara. Un cirujano no puede sacar el tumor sin sacar esas neuronas. Y si saca esas neuronas, Lucas no puede respirar, no puede latir el corazón. No es que el cirujano no tenga la habilidad de operar el tumor. Es que el tumor y el puente son la misma cosa. No hay borde entre el tumor y el tejido vital que lo rodea. Por eso no se opera.” (Lucas’s tumor did not form next to those structures — it formed inside them. It is called ‘diffuse’ because it is mixed with the normal tissue of the pons. The tumor cells are interwoven with the neurons that control Lucas’s breathing, his heart rhythm, the nerves of his face. A surgeon cannot remove the tumor without removing those neurons. And if those neurons are removed, Lucas cannot breathe, the heart cannot beat. It is not that the surgeon lacks the skill to operate on the tumor. It is that the tumor and the pons are the same thing. There is no boundary between the tumor and the vital tissue surrounding it. That is why surgery is not an option.)
Raúl uncrossed his arms. “¿Y la radiación?” (And radiation?)
“La radiación no elimina el tumor. Pero lo que sí puede hacer es reducir su actividad — frenar temporalmente el crecimiento de las células del tumor — de manera que las estructuras del puente que están siendo comprimidas por el tumor puedan funcionar mejor durante un tiempo. Cuando el tumor se reduce aunque sea parcialmente, el nervio que mueve los ojos de Lucas hacia la derecha tiene menos presión. El nervio que controla los músculos del lado izquierdo de la cara de Lucas tiene menos compresión. El camino de señales entre el cerebro y las piernas de Lucas tiene más espacio.” (Radiation does not eliminate the tumor. But what it can do is reduce its activity — temporarily slow the growth of the tumor cells — such that the structures of the pons that are being compressed by the tumor can function better for a time. When the tumor shrinks even partially, the nerve that moves Lucas’s eyes to the right has less pressure on it. The nerve that controls the muscles on the left side of Lucas’s face has less compression. The signal pathway between the brain and Lucas’s legs has more room.)
“¿Cuánto tiempo?” Elena asked, her voice careful. (How much time?)
“Los estudios muestran que sin radiación, la mayoría de los niños con el tumor de Lucas viven entre cinco y siete meses desde el diagnóstico. Con radiación, la mayoría vive entre nueve y once meses. La diferencia — cuatro a seis meses — es tiempo real. Tiempo donde Lucas puede tener menos caída facial, menos visión doble, más capacidad de caminar. Tiempo donde Lucas puede estar en casa con ustedes, en la escuela una parte del tiempo si sus síntomas lo permiten, haciendo las cosas que Lucas hace. Eso no es rendirse. Esa es la única intervención que tenemos probada para darle más tiempo de calidad a Lucas.” (The studies show that without radiation, most children with Lucas’s tumor live between five and seven months from diagnosis. With radiation, most live between nine and eleven months. The difference — four to six months — is real time. Time where Lucas can have less facial droop, less double vision, more ability to walk. Time where Lucas can be at home with you, at school part of the time if his symptoms allow, doing the things Lucas does. That is not giving up. That is the only proven intervention we have to give Lucas more quality time.)
Lucas looked up. He had been listening. “¿Me va a doler la radiación?” (Is radiation going to hurt me?)
“No durante la sesión misma,” Marisol said, turning to him directly. “La máquina hace un sonido, pero tú no sientes nada en el momento. Después puede haber un poco de cansancio, y a veces la piel se pone un poquito rosa. Pero el tratamiento en sí no duele.” (Not during the session itself. The machine makes a sound, but you do not feel anything in the moment. Afterward there can be a little tiredness, and sometimes the skin gets a little pink. But the treatment itself does not hurt.)
Lucas considered this and returned to his truck.
“También hay algo más que quiero que sepan,” Marisol continued. “El tipo de tumor de Lucas — con la mutación H3K27M — es el objetivo de varios medicamentos experimentales que están en estudios clínicos ahora mismo. Estos medicamentos actúan directamente sobre esa mutación específica. Son la única línea de investigación que tiene el potencial de curar el DIPG. La radiación le da a Lucas el tiempo que necesita mientras esos estudios continúan. No estamos ofreciendo la radiación porque no haya otra opción disponible — estamos ofreciendo la radiación porque es lo que le da a Lucas más tiempo de calidad mientras seguimos buscando.” (There is also something else I want you to know. Lucas’s type of tumor — with the H3K27M mutation — is the target of several experimental medications that are in clinical studies right now. These medications act directly on that specific mutation. They are the only line of investigation that has the potential to cure DIPG. Radiation gives Lucas the time he needs while those studies continue. We are not offering radiation because there is no other option available — we are offering radiation because it is what gives Lucas more quality time while we keep searching.)
Raúl exhaled slowly. He looked at his son. “Entonces la radiación no es rendirse,” he said. “La radiación es lo único que puede darle tiempo a Lucas mientras los médicos buscan un tratamiento que sí pueda curar el tipo de tumor que tiene.” (So radiation is not giving up. Radiation is the only thing that can give Lucas time while the doctors look for a treatment that can actually cure the type of tumor he has.)
“Exactamente eso,” Marisol said. (Exactly that.)
Lucas held up his drawing. “Le puse tu nombre al camión,” he told Raúl. “Dice ‘Papá.’” (I put your name on the truck. It says ‘Papá.’)
Raúl took the drawing. He held it with both hands.
Scenario 2: Isabela Herrera-Santos — 3 days old, San Antonio, Texas
Isabela Herrera-Santos had been born at 38 weeks and 3 days by scheduled cesarean section at University Hospital in San Antonio after prenatal ultrasound at 20 weeks had shown suspected cardiac and structural abnormalities. Chromosomal microarray on amniocentesis confirmed full trisomy 18 — three copies of chromosome 18 in all analyzed cells. The family had been counseled during the pregnancy by maternal-fetal medicine and by the pediatric cardiology and neonatology teams at a prenatal consultation. Isabela was born with a birth weight of 2,310 grams. She had the characteristic overlapping fingers of the index over the third finger bilaterally, low-set posteriorly rotated ears, micrognathia, and central hypotonia on her newborn neurological examination. Her suck reflex was absent. She had required CPAP within the first four hours of life for apneic episodes. Echocardiogram on day one confirmed a complete atrioventricular canal defect with an unrestrictive left-to-right shunt and moderate pulmonary hypertension. Renal ultrasound showed a horseshoe kidney configuration. Ophthalmology noted coloboma of the left iris.
On day three, the neonatology attending asked the palliative care team to join a family meeting. Carlos Herrera, a city bus driver who had worked the same route for eleven years, and Sofía Santos, a home health aide who had cared for elderly patients with complex medical needs for seven years, sat in the family consultation room beside the NICU with Isabela in Sofía’s arms, still on low-flow oxygen through nasal prongs.
When the palliative care nurse Ana Espinoza-Reyes introduced herself, Sofía’s expression changed. “Perdón,” she said. Her voice was controlled in the way of someone who had learned not to show fear in front of patients. “¿Cuidados paliativos? Eso es para cuando ya no hay nada que hacer. ¿Están diciéndonos que dejemos de pelear por Isabela?” (Excuse me. Palliative care? That is for when there is nothing more to do. Are you telling us to stop fighting for Isabela?)
Carlos had his jaw set. “Isabela está viva. Está aquí. Quiero que hagan todo lo posible.” (Isabela is alive. She is here. I want you to do everything possible.)
Ana had heard this introduction — or a version of it — many times. She understood the fear exactly. The word “palliative” had been attached to a meaning it did not have, and the family was acting on that meaning with the love and ferocity that the situation deserved.
“Voy a empezar con lo más importante,” she said. “El equipo de cuidados paliativos no está aquí para convencerlos de parar. No estamos aquí para decirles que Isabela no vale la pena de pelear. Y nuestra presencia aquí no significa que el equipo médico crea que Isabela no va a sobrevivir. Lo que hacemos es diferente de eso.” (I am going to start with what is most important. The palliative care team is not here to convince you to stop. We are not here to tell you Isabela is not worth fighting for. And our presence here does not mean the medical team believes Isabela will not survive. What we do is different from that.)
Sofía looked up. “¿Entonces qué hacen?” (Then what do you do?)
“El equipo de cuidados paliativos trabaja junto con el equipo de la NICU — no en lugar de él. Nuestro trabajo es tres cosas: primero, asegurarnos de que Isabela esté cómoda — que no tenga dolor, que los procedimientos que necesite sean lo menos angustiantes posible para ella. Segundo, asegurarnos de que ustedes como familia tengan toda la información que necesitan para tomar decisiones — sobre la cirugía, sobre las opciones de cuidado, sobre qué significa cada camino. Tercero, apoyarlos a ustedes — a los dos, y también a cualquier familiar que esté pasando por esto con ustedes. Si Isabela necesita la cirugía del corazón y ustedes deciden hacerla, el equipo de cuidados paliativos sigue aquí. Si deciden no hacerla, el equipo de cuidados paliativos sigue aquí. No desaparecemos según la decisión que tomen. Estamos aquí para que cualquier camino que elijan sea el mejor posible para Isabela y para ustedes.” (The palliative care team works alongside the NICU team — not instead of it. Our job is three things: first, making sure Isabela is comfortable — that she is not in pain, that the procedures she needs are as non-distressing as possible for her. Second, making sure you as a family have all the information you need to make decisions — about surgery, about care options, about what each path means. Third, supporting you — both of you, and also any family member going through this with you. If Isabela needs heart surgery and you decide to do it, the palliative care team is still here. If you decide not to, the palliative care team is still here. We do not disappear depending on the decision you make. We are here so that whatever path you choose is the best possible for Isabela and for you.)
Carlos had been watching Ana steadily. Something in his posture had changed — the set jaw remained, but the set had shifted from defensive to attentive. “¿Entonces hay una opción de cirugía?” (So there is a surgical option?)
“Sí. Eso es parte de lo que quiero explicarles hoy — con honestidad completa sobre lo que la cirugía puede y no puede lograr para Isabela específicamente.” (Yes. That is part of what I want to explain to you today — with complete honesty about what surgery can and cannot achieve for Isabela specifically.)
Ana took a breath. “La Trisomía 18 es una condición donde todas las células del cuerpo de Isabela tienen una copia extra del cromosoma 18 — tres copias en lugar de dos. Ese cromosoma adicional está en cada célula del cuerpo — en el corazón, en el cerebro, en los riñones, en los nervios. Eso significa que la Trisomía 18 no es solo un problema del corazón. Es un condición que afecta el desarrollo de todos los órganos al mismo tiempo.” (Trisomy 18 is a condition where all of Isabela’s body cells have an extra copy of chromosome 18 — three copies instead of two. That additional chromosome is in every cell in the body — in the heart, in the brain, in the kidneys, in the nerves. That means Trisomy 18 is not just a heart problem. It is a condition that affects the development of all organs at the same time.)
“El defecto del corazón de Isabela — el canal AV completo — es un tipo de defecto que los cirujanos cardíacos han operado en bebés con Trisomía 18 antes. En los centros con más experiencia, aproximadamente un tercio a la mitad de los bebés sobreviven hasta salir del hospital después de la cirugía. Eso significa que hay bebés con Trisomía 18 que han tenido esa cirugía y han llegado a casa. Algunos de ellos viven un año, algunos viven más. Hay familias que han tenido años con sus hijos después de la cirugía.” (Isabela’s heart defect — the complete AV canal — is a type of defect that cardiac surgeons have operated on in babies with Trisomy 18 before. In the centers with the most experience, approximately one-third to one-half of babies survive to hospital discharge after surgery. That means there are babies with Trisomy 18 who have had that surgery and made it home. Some of them live one year, some live more. There are families who have had years with their children after surgery.)
Sofía had been listening with her hand over Isabela’s back. “¿Y la otra parte? ¿Lo que la cirugía no puede lograr?” (And the other part? What surgery cannot achieve?)
“La Trisomía 18 también afecta el sistema nervioso — el tronco cerebral, el cerebro, los nervios. Los episodios donde Isabela deja de respirar — los que requieren el CPAP — vienen de esa parte. El tronco cerebral de Isabela no regula la respiración de manera completamente automática como debería, porque el cromosoma adicional afecta el desarrollo de esas neuronas. Eso no es algo que la cirugía del corazón pueda cambiar. La cirugía puede arreglar el corazón. No puede cambiar el tronco cerebral o los nervios o los riñones o cualquier otro órgano afectado por la Trisomía 18. Isabela, después de la cirugía del corazón exitosa, seguiría teniendo los episodios de apnea que tiene ahora. Seguiría necesitando soporte para la respiración. Y su trayectoria a largo plazo dependería de cómo su sistema nervioso y sus otros órganos responden — no solo del corazón.” (Trisomy 18 also affects the nervous system — the brainstem, the brain, the nerves. The episodes where Isabela stops breathing — the ones requiring CPAP — come from that part. Isabela’s brainstem does not regulate breathing completely automatically as it should, because the additional chromosome affects the development of those neurons. That is not something cardiac surgery can change. Surgery can fix the heart. It cannot change the brainstem or the nerves or the kidneys or any other organ affected by Trisomy 18. Isabela, after successful cardiac surgery, would continue to have the apneic episodes she has now. She would continue to need respiratory support. And her long-term trajectory would depend on how her nervous system and other organs respond — not just the heart.)
Carlos was quiet for a long moment. “¿Y si no operamos?” (And if we do not operate?)
“Sin la cirugía del corazón, el defecto cardíaco es la causa más probable de muerte en los próximos meses — la mayoría de los bebés con Trisomía 18 sin cirugía cardíaca viven semanas a meses. El enfoque sería asegurarnos de que Isabela esté completamente cómoda — sin dolor, sostenida en brazos de la familia tanto como sea posible, con todos los medicamentos para el confort que necesite — y que tengan todo el tiempo posible juntos. Algunos bebés con Trisomía 18 viven más tiempo de lo esperado incluso sin cirugía, especialmente si los episodios de apnea responden al soporte no invasivo como el CPAP.” (Without cardiac surgery, the cardiac defect is the most likely cause of death in the coming months — most babies with Trisomy 18 without cardiac surgery live weeks to months. The focus would be making sure Isabela is completely comfortable — no pain, held in the family’s arms as much as possible, with all the comfort medications she needs — and that you have as much time together as possible. Some babies with Trisomy 18 live longer than expected even without surgery, especially if the apneic episodes respond to non-invasive support like CPAP.)
Sofía shifted Isabela slightly in her arms. The baby made a small sound and settled. “¿Ustedes qué nos recomiendan?” (What do you recommend?)
“No hay una respuesta médica única que sea correcta para todas las familias en la situación de ustedes,” Ana said. “Hay familias que eligen la cirugía y tienen años con sus hijos. Hay familias que eligen el cuidado de confort y tienen meses preciosos con su bebé. La recomendación del equipo médico es que elijan con información completa — sabiendo lo que la cirugía puede lograr y lo que no puede cambiar. Cualquiera de las dos decisiones va a ser apoyada completamente por el equipo. El equipo de paliativos va a estar con ustedes en los dos casos.” (There is no single medically correct answer for all families in your situation. There are families who choose surgery and have years with their children. There are families who choose comfort care and have precious months with their baby. The medical team’s recommendation is that you choose with complete information — knowing what surgery can achieve and what it cannot change. Either decision will be completely supported by the team. The palliative care team will be with you in both cases.)
Carlos put his hand over Sofía’s where it rested on Isabela’s back. Isabela was sleeping.
“Entiendo ahora,” Sofía said. “El equipo de cuidados paliativos no está aquí para convencernos de no operar. Está aquí para que entendamos todo lo que significa cada camino — y para que Isabela esté cómoda y nosotros estemos apoyados sin importar qué elijamos.” (I understand now. The palliative care team is not here to convince us not to operate. They are here so that we understand everything each path means — and so that Isabela is comfortable and we are supported no matter what we choose.)
“Exactamente eso,” Ana said. (Exactly that.)
“¿Podemos ver las fotos de los bebés que sí sobrevivieron?” Carlos asked. “Los del grupo que sí llegaron a casa.” (Can we see the photos of the babies who did survive? The ones from the group who did make it home.)
“Sí,” Ana said. “Hay familias que han dado permiso para compartir esas historias. Les consigo eso.” (Yes. There are families who have given permission to share those stories. I will get that for you.)
Scenario 3: Miguel Ramírez-Torres — 15 years old, Dallas, Texas
Miguel Ramírez-Torres had been diagnosed with osteosarcoma of the right distal femur at age thirteen after three months of knee pain that his parents had attributed to growing pains. His alkaline phosphatase was markedly elevated, and the MRI showed a large destructive mass of the distal femur metaphysis with periosteal elevation and soft tissue extension. Biopsy confirmed conventional high-grade osteosarcoma. He had received neoadjuvant chemotherapy with MAP protocol — three cycles of high-dose methotrexate, doxorubicin, and cisplatin — followed by limb-salvage resection of the distal femur with reconstruction. Pathological examination of the resection specimen showed 95 percent tumor necrosis — a favorable response. He completed three more cycles of adjuvant MAP and was followed in surveillance.
The surveillance CT at fourteen months post-resection showed two new pulmonary nodules in the right lower lobe. Biopsy confirmed osteosarcoma metastasis. Salvage chemotherapy with gemcitabine and docetaxel was initiated. Restaging at four months showed progressive bilateral pulmonary metastases and a new lesion in the right iliac crest on bone scan. A second salvage regimen with ifosfamide and etoposide produced no measurable response. The treatment team discussed the situation with Miguel and his family: no standard salvage regimen had produced meaningful tumor control, and the burden of continued chemotherapy in the context of progressive disease and worsening functional status outweighed the potential benefit. Miguel and his family, after multiple discussions over several weeks, decided to enroll in home hospice.
Six weeks into hospice, Miguel’s pain from his pulmonary metastases and bone lesion had been escalating. His pain regimen had been adjusted three times. He was currently on an intravenous morphine patient-controlled analgesia pump with a basal rate of 2 milligrams per hour and a demand bolus of 1 milligram every ten minutes. The basal rate had been increased from 1 milligram per hour to 1.5 milligrams per hour nine days before, and then to 2 milligrams per hour four days before, each time because Miguel was waking from sleep with pain, rating his pain at 7 or 8 out of 10, and using all available demand boluses without adequate relief at the lower rate.
Roberto Ramírez, a construction site supervisor, had called the hospice line that evening. He spoke with pediatric palliative care nurse Carmen Villanueva-Castillo at the follow-up visit the next morning. Luisa Torres, Miguel’s mother and a dental receptionist, was also present. Miguel was in his bedroom with his headphones on, and the conversation was taking place in the kitchen.
“Yo sé que lo único que importa es que Miguel no tenga dolor,” Roberto began. He had his hands flat on the kitchen table. “Pero he leído sobre la crisis de opioides. He visto lo que le pasa a la gente con estos medicamentos. Y me preocupa que cada vez que veo que suben la dosis, me pregunte si Miguel se está volviendo adicto. Y si ya murió drogadicto en lugar de como él es — un buen muchacho que jugaba futúbol. No quiero que eso sea lo que sea lo último que le pase.” (I know the only thing that matters is that Miguel is not in pain. But I have read about the opioid crisis. I have seen what happens to people with these medications. And I am worried that every time I see the dose go up, I ask myself whether Miguel is becoming addicted. And whether he will have died a drug addict instead of who he is — a good kid who played soccer. I do not want that to be the last thing that happens to him.)
Luisa had been nodding. “Yo le he dicho a Miguel que pida menos dosis — que aguante un poco más antes de apretar el botón. Porque me da miedo también.” (I have been telling Miguel to request fewer doses — to hold out a little longer before pressing the button. Because I am also afraid.)
Carmen absorbed both statements without visible reaction. The fear was real and came from love. But what Roberto and Luisa were doing — Roberto asking about addiction, Luisa asking Miguel to tolerate more pain — meant that Miguel might be in pain he did not need to be in because his parents were afraid of a thing that did not apply to him.
“Gracias por decirme esto,” she said. “Lo que me están diciendo importa mucho para el cuidado de Miguel. Y lo que quiero hacer hoy es explicarles la diferencia entre dos cosas que tienen nombres que suenan parecidos pero que son completamente diferentes en el cuerpo: la tolerancia a los opioides y la adicción a los opioides. Porque la preocupación que tienen — que Miguel se está volviendo adicto — es una preocupación que tiene sentido si no conocemos esa diferencia. Pero cuando la conocemos, vemos que lo que le está pasando a Miguel es completamente diferente.” (Thank you for telling me this. What you are telling me matters a great deal for Miguel’s care. And what I want to do today is explain the difference between two things that have names that sound similar but that are completely different in the body: opioid tolerance and opioid addiction. Because the concern you have — that Miguel is becoming addicted — is a concern that makes sense if we do not know that difference. But when we know it, we see that what is happening to Miguel is completely different.)
Roberto leaned forward slightly. Luisa uncrossed her arms.
“La morfina actúa en el cuerpo de Miguel fijándose a receptores específicos — los llamamos receptores mu-opioides — que están en los nervios que transmiten el dolor. Cuando la morfina ocupa esos receptores, bloquea la señal de dolor. Eso es el efecto que buscamos. Pero cuando esos receptores son ocupados continuamente — día tras día — el cuerpo hace algo que hace con muchos medicamentos: se adapta. Los receptores responden al uso continuo siendo menos sensibles a la morfina. Parte de esa adaptación es que algunos receptores desaparecen de la superficie de los nervios — el cuerpo los retira hacia adentro. Parte es que los receptores que quedan se conectan menos eficientemente con las proteínas dentro de la célula que producen el bloqueo del dolor. El resultado es que la misma dosis de morfina que la semana pasada controlaba bien el dolor de Miguel, esta semana controla menos — no porque Miguel necesite más morfina para sentirse bien sin dolor, sino porque los receptores que reciben la morfina están reducidos.” (Morphine acts in Miguel’s body by binding to specific receptors — we call them mu-opioid receptors — that are on the nerves that transmit pain. When morphine occupies those receptors, it blocks the pain signal. That is the effect we are seeking. But when those receptors are continuously occupied — day after day — the body does something it does with many medications: it adapts. The receptors respond to continuous use by becoming less sensitive to morphine. Part of that adaptation is that some receptors disappear from the surface of the nerves — the body pulls them inward. Part is that the receptors that remain connect less efficiently with the proteins inside the cell that produce the pain block. The result is that the same dose of morphine that controlled Miguel’s pain well last week controls it less this week — not because Miguel needs more morphine to feel good without pain, but because the receptors receiving the morphine have been reduced.)
“Eso se llama tolerancia — no adicción. La tolerancia es una adaptación farmacológica del receptor. La vemos con muchos medicamentos — con medicamentos para la presión arterial, con medicamentos para el sueño. No tiene nada que ver con la personalidad de Miguel, con su voluntad, con si es una persona con tendencia a las adicciones. Es química pura de receptor. Y la respuesta clínica a la tolerancia es ajustar la dosis — subir la morfina para compensar la reducción en los receptores, de manera que Miguel siga teniendo el bloqueo del dolor que necesita.” (That is called tolerance — not addiction. Tolerance is a pharmacological receptor adaptation. We see it with many medications — with blood pressure medications, with sleep medications. It has nothing to do with Miguel’s personality, his willpower, whether he is a person with a tendency toward addiction. It is pure receptor chemistry. And the clinical response to tolerance is to adjust the dose — increase the morphine to compensate for the reduction in receptors, so that Miguel continues to have the pain block he needs.)
Roberto was very still. “¿Y la adicción?” he asked. (And addiction?)
“La adicción — el trastorno por uso de opioides — es algo completamente diferente. La adicción es cuando una persona busca el medicamento compulsivamente para obtener sus efectos fuera del propósito médico — para sentir euforia, para escapar de algo emocionalmente, para un efecto que no es el control del dolor. La adicción requiere un contexto de comportamiento: la persona busca el medicamento cuando no lo necesita médicamente, siente un deseo compulsivo de tenerlo, sigue usándolo aunque le cause daño en su vida — en sus relaciones, en su trabajo, en su bienestar. Todo el diagnóstico de adicción depende de ese contexto.” (Addiction — opioid use disorder — is something completely different. Addiction is when a person seeks the medication compulsively to obtain its effects outside of the medical purpose — to feel euphoria, to escape something emotionally, for an effect that is not pain control. Addiction requires a behavioral context: the person seeks the medication when they do not medically need it, feels a compulsive desire to have it, continues using it even though it causes harm in their life — in their relationships, in their work, in their wellbeing. The entire diagnosis of addiction depends on that context.)
“Miguel recibe morfina a través de una bomba manejada médicamente para controlar el dolor de metástasis ósea que de otra manera lo despertaría de noche con un dolor de siete u ocho sobre diez, que le impediría comer, que haría que cada hora fuera dominada por el dolor en lugar de por la familia. No está buscando la morfina para ningún propósito que no sea el dolor. No hay contexto de adicción porque no hay comportamiento de búsqueda fuera del contexto médico. Cuando decimos que el diagnóstico de adicción depende de un contexto de comportamiento, eso no es un juicio sobre Miguel — es que esa conducta simplemente no existe en su situación. Miguel no puede desarrollar adicción desde una bomba médica de PCA para dolor de metástasis.” (Miguel receives morphine through a medically managed pump to control bone metastasis pain that would otherwise wake him at night with seven or eight out of ten pain, that would prevent him from eating, that would make every hour dominated by pain instead of by family. He is not seeking morphine for any purpose other than pain. There is no addiction context because there is no drug-seeking behavior outside the medical context. When we say that the addiction diagnosis depends on a behavioral context, that is not a judgment about Miguel — it is that that behavior simply does not exist in his situation. Miguel cannot develop addiction from a medical PCA pump for metastasis pain.)
Luisa had both hands over her mouth. She looked at Roberto. “Le estaba diciendo que aguantara,” she said, her voice breaking. (I was telling him to hold out.)
“Lo sé,” Carmen said gently. “Lo hacía por amor. Pero ahora que entienden la diferencia, podemos asegurarnos de que Miguel tenga el control del dolor que necesita — sin miedo de que eso lo esté haciendo adicto, porque no lo está haciendo.” (I know. You were doing it out of love. But now that you understand the difference, we can make sure Miguel has the pain control he needs — without fear that it is making him addicted, because it is not.)
“¿Podemos decirle que puede apretar el botón cuando necesite?” Roberto asked. (Can we tell him he can press the button when he needs to?)
“Sí. El objetivo de la bomba es que Miguel pueda dormir la noche completa, que pueda comer algo, que pueda estar en el sillón con ustedes viendo algo en la tele sin que el dolor sea lo único que existe en ese momento. Ese es el objetivo. Si el dolor está interfiriendo con eso, necesitamos ajustar. La dosis es un parámetro al servicio de ese objetivo — nada más.” (Yes. The goal of the pump is for Miguel to sleep through the night, to be able to eat something, to be in the chair with you watching something on television without pain being the only thing that exists in that moment. That is the goal. If pain is interfering with that, we need to adjust. The dose is a parameter in service of that goal — nothing more.)
Roberto stood up. “Voy a decirle,” he said. He walked down the hall toward Miguel’s room. (I am going to tell him.)
Luisa looked at Carmen. “¿Hay alguna manera de saber si el medicamento lo está ayudando — de verdad ayudando?” (Is there a way to know if the medication is helping him — really helping?)
“Sí,” Carmen said. “Si Miguel puede dormir cuatro o cinco horas seguidas. Si puede comer algo. Si cuando está despierto, el dolor no es lo primero que menciona. Si puede tener una conversación sin tener que parar por el dolor. Esas son las señales de que el medicamento está haciendo su trabajo. Eso es lo que estamos buscando.” (Yes. If Miguel can sleep four or five hours in a row. If he can eat something. If when he is awake, pain is not the first thing he mentions. If he can have a conversation without having to stop because of pain. Those are the signs that the medication is doing its job. That is what we are looking for.)
From down the hall, there was a sound that might have been the television or might have been Roberto’s voice, and then Miguel’s voice, and then the two of them together.
Luisa wiped her eyes. “Entonces cuando la dosis sube, no es porque Miguel se está volviendo adicto,” she said. “Es porque su cuerpo se adaptó al nivel anterior y necesitamos subir la dosis para que el medicamento siga haciendo su trabajo — que es controlar el dolor para que Miguel pueda estar presente con nosotros.” (So when the dose goes up, it is not because Miguel is becoming addicted. It is because his body adapted to the previous level and we need to raise the dose so the medication keeps doing its job — which is to control pain so Miguel can be present with us.)
“Exactamente eso,” Carmen said. (Exactly that.)