Opinion
A PIECE OF MY MIND William Rafelson, MD, MBA Department of Medicine, Warren Alpert Medical School of Brown University, Rhode Island Hospital, Providence.
Corresponding Author: William Rafelson, MD, MBA (wrafelson@lifespan .org). Section Editor: Roxanne K. Young, Associate Senior Editor. jama.com
The Warmth “Why didn’t you do oncology? Mom says you almost chose it.” “One of my patients,” Dad texted. “29. Cute. Funny. AML. She died while I was covering her.” “It’s here,” the nurse says. She calls it with a warm, sweet voice, a relief, as if announcing a sun shower passing through. She says the words, unassuming and simple and pregnant with meaning, and I feel the warmth instantly. It comes over me like a fever with chills. It fills me, then rolls along the hallways of 8A, permeates the cotton linens, drapes over the tired shoulders of overnight nurses. Morning light fills the hospital floor and a euphoria comes over me, something I haven’t felt since my first delivery as a medical student. Something beautiful is going on and I am about to see it. 827. A middle-aged man rendered paraplegic from lymphoma. He passed. His family surrounds him, part crying, part laughing from love of their son, and his relief from pain. We hug them. Mom holds on. She says, “He’s in heaven, walking again.” I agree. We continue rounds. My chest feels warm, and I catch myself smiling halfway down the hall. They say there are four quarters to becoming a physician in residency: day 1, week 1, month 1, and everything after. I’m on 8A (Hem-Onc) for the first month. I feared oncology would burn me out. It can, but it hasn’t. I sit cross-legged on the trash can in 854 on a Friday night, chatting about the patient’s time in the military, his love of roasting his own coffee beans, and his advocacy for medical marijuana. I ask what his secret is for enjoying life in the face of acute myelogenous leukemia (AML), the fourth cancer of his lifetime. A cachectic man in glasses, he shrugs his shoulders. “I keep busy. I have a lot of hobbies, I guess.” He smiles. None of my patients, no matter how uneducated or how poor, none of them are stupid. They read us better than we can. In 823, a 70-year-old woman with multiple myeloma and a brain bleed is “altered.” Bed rails up. She cries during every attending rounds. “Emotionally labile,” I write in every progress note. On her penultimate rounds, we talk about the plan. She halfgrins. “There is no plan. I’m dying.” She’s right. We change the goal to home. And I learn we don’t keep patients captive. The next day I see her for the first time not crying. The ambulance crew is here to take her home. I hold her wrist. “We’re springing you out of here.” Her smile, a true smile, is so powerful that I have to rub my eyes. Kyle, in room 802, is my last patient before I sign out of 8A. He’s a guy my age from East Greenwich with metastatic melanoma of the leg, adrenals, and brain. He comes here for inability to walk for five days. For the past year
he had been through multiple operations and chemotherapies for melanoma. The leg is swollen, foulsmelling, covered in metastases. Kyle shakes his head, embarrassed. We treat him for a possible cellulitis, but suspicion is low. This is cancer. He lies in bed, wincing from the pain that he says is a 4 out of 10. He’s wearing a gray T-shirt with a family crest that reads “House Lannister,” an ironic nod to the villainous clan of the TV series Game of Thrones. I like him instantly. I ask him how he’s coping with his illness. “I’m OK.” He scratches his overgrown beard. “I have what I have, it is what it is.” Over the week, Kyle and I say good morning, chat about what’s on television. His pain score of 4 means he still can’t get out of bed. He rarely asks for his “asneeded” Dilaudid, so I order a pain pump with a button. He pushes it twice an hour, maxing it. “Are you in pain?” I ask the next morning. “Still about a 4 or a 5.” We go up. A week goes by. Second-to-last day on Hem-Onc. The dog refuses to poop, and I am running late. My wife, a resident in the ICU, calls me in the car. “They are coding Kyle. Come quick.” I speed up. I go down the hall toward Kyle’s room. I see his girlfriend, her face red from grief. The code team is down the hall. In Kyle’s room he lies in the bed with a nonrebreather mask and a respiratory therapist ready to intubate. He’s thrashing around uncomfortably, eyes closed, trying to pull the mask off. I see his mother walk in. A retired OR nurse here, Fran has a long face and tired eyes. The senior resident running the code informs her that Kyle has had a seizure. “I know he’s technically Full Code, but I would hate to intubate him without talking to you first.” She shakes her head “no” repeatedly. I sense the night team is disarmed by a mother who prioritizes comfort, not the ICU, for her 34-year-old son. But they don’t know. Kyle’s mother holds out her hands. “What are we going to do when he's intubated?” The resident responds, “Well, that just buys us time so we can get him to CT.” “And then where? I know what he has.” I feel tension, so I speak. “I think keeping him comfortable is a very good decision, actually. That’s what a good mom would do.” Fran grabs me and cries. My job now is to make Kyle comfortable. Dr Martin, our palliative care consultant, guides us. Ativan and Haldol every hour as needed, Dilaudid PCA drip. The pharmacy pages me to confirm this is what I meant to order. Yes. I walk back in. The room has changed. No more respiratory therapists—crash cart is gone. No more JAMA October 16, 2013 Volume 310, Number 15
Downloaded From: http://jama.jamanetwork.com/ by a University of Arizona Health Sciences Library User on 05/27/2015
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Opinion A Piece of My Mind
thrashing and moaning, now he lies in bed sleeping. Scrub nurses and unit secretaries, family and close friends, sit around the young man. Kyle’s girlfriend lies spooning him. I am overwhelmed by kindness and good will. I get the pieces of my patient I forgot to ask. Was he a good boy? Yes. He was in Pearl Harbor for four years. He loved video games, his girlfriend, his country, tattoos, kilts, and the navy. He was a “coner”—worked at the head of the submarine in sonar. He was adopted. His aunt says, “They went to the baby store and got Kyle.” His breathing changes. I begin to doubt myself. Could we have reduced the swelling with a higher steroid regimen? Could we have saved him if we didn’t focus on treating the leg wound, and instead went after the cancer with chemo? The “what-if’s” push families and physicians alike to madness. It precludes healing and does nothing for the patient in the bed. When I think of all the survivors who feel guilty or angry when a son dies, I think of when Kyle and I first met: I have what I have, it is what it is. A silence falls on the family. I speak up. “I just want to make sure there are no feelings of guilt. This was an aggressive disease. He is very brave. Now it’s all about love.” Father Ranallo stops by to give Kyle his last rites. I am outside at the nursing station, standing guard. He comes out of the room. “Beautiful family,” he says. “He’s lucky,” I reply. I’m called back into the room for stopped breathing. The family goes to the lounge to wait. I put my hand on Kyle. He becomes tachycardic, so I become tachycardic. I rub his shoulder. “We’re okay, Kyle. We’re okay.” We wait together. It passes. I can’t declare the exact time because there’s no one moment. I pull up the covers to keep him warm. I close the door on my way out, massaging my forehead. I feel something that I haven’t felt in eight years: shame. Shame that my testicular cancer was curable and his melanoma was not. I want to go back into Kyle’s room one week prior. I want to go beneath just the talk about Game of Thrones and Married With Children. I want to tell him why I really got into oncology. I want to tell him that I too had operations and chemo as a young man. That I’m on 8A along with him. That 8A is just a synecdoche, a thing standing for more than just a floor, but a community of patients and families who feel how Kyle feels: in pain, embarrassed, and with no choice but to face reality. Dedication: For Kyle and the rest of 8A. Additional Contributions: I would like to thank Fran Courtney for allowing me to take care of her
1566
I begin to miss Kyle, our mornings, “bullshitting” about TV, tattoos, and Rhode Island. Our conversations were short, but the punctuation filled with our uncertainty about the future. I go see Fran. She gives me a hug good-bye. “In a few weeks, I’ll bring you some baked goods.” “My wife’s covering 8A after I leave,” I say. “I’ll ask her to page me.” I go back into the resident lounge. Thankfully, Hem-Onc is not intensive care. When patients die, we come together—nurses, secretaries, physicians—to heal. I usually say something like, I’ll miss her smile. Or, he was a nice guy. We don’t have to be profound, we just have to be true. In the act of talking we process what would otherwise make us cold. In the act of writing we remember what we said. I confide to Rob, my senior. “Poor Kyle. My only wish is that I could have sat with him for longer, and talked.” Rob nods, then pauses. “You know, when I talked to him, I got the sense that wasn’t what he wanted. What he wanted was a doctor to treat his pain without making him feel embarrassed. You gave him the button before he died.” I seek support from my attending, Dr Quesenberry, who heads the division. An avuncular man, he leans back in his chair. “Even when you think you can’t do anything, they need you. You serve a very important role for them.” He clasps his hands. “You heal them.” Second-to-last day on Hem-Onc. I pull out the list of “8A Survival Tips” written by those before me. Make sure you check for fever in your neutropenics. Chemotherapy has a lot of fluid in it— watch for heart failure. Important orders not to forget: DVT prophylaxis, morning labs, coverage, diet. I draw a line and begin to write. “Code status is impermanent. If your patient is dying, talk to the family, tell them the prognosis. Give them your gut call. We can’t always prevent death, but we can always control how it happens. A good death on 8A or at home can be better than a tragic death in the ICU.” Home Sunday morning. I hold the dog in my arms, swaying to Dylan. My rotation ends on Monday. I have 24 hours to write. Where to begin. I text my father: “Pronounced my first patient yesterday. Nice young man with melanoma. Beautiful family. An honorable death. Still want to be an oncologist.”
son. I would also like to acknowledge Tovah Tripp, MD, for her editorial guidance, and for calling me.
Disclosure of Potential Conflicts of Interest and none were reported.
Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for
JAMA October 16, 2013 Volume 310, Number 15
Downloaded From: http://jama.jamanetwork.com/ by a University of Arizona Health Sciences Library User on 05/27/2015
jama.com
A PIECE OF MY MIND William Rafelson, MD, MBA Department of Medicine, Warren Alpert Medical School of Brown University, Rhode Island Hospital, Providence.
Corresponding Author: William Rafelson, MD, MBA (wrafelson@lifespan .org). Section Editor: Roxanne K. Young, Associate Senior Editor. jama.com
The Warmth “Why didn’t you do oncology? Mom says you almost chose it.” “One of my patients,” Dad texted. “29. Cute. Funny. AML. She died while I was covering her.” “It’s here,” the nurse says. She calls it with a warm, sweet voice, a relief, as if announcing a sun shower passing through. She says the words, unassuming and simple and pregnant with meaning, and I feel the warmth instantly. It comes over me like a fever with chills. It fills me, then rolls along the hallways of 8A, permeates the cotton linens, drapes over the tired shoulders of overnight nurses. Morning light fills the hospital floor and a euphoria comes over me, something I haven’t felt since my first delivery as a medical student. Something beautiful is going on and I am about to see it. 827. A middle-aged man rendered paraplegic from lymphoma. He passed. His family surrounds him, part crying, part laughing from love of their son, and his relief from pain. We hug them. Mom holds on. She says, “He’s in heaven, walking again.” I agree. We continue rounds. My chest feels warm, and I catch myself smiling halfway down the hall. They say there are four quarters to becoming a physician in residency: day 1, week 1, month 1, and everything after. I’m on 8A (Hem-Onc) for the first month. I feared oncology would burn me out. It can, but it hasn’t. I sit cross-legged on the trash can in 854 on a Friday night, chatting about the patient’s time in the military, his love of roasting his own coffee beans, and his advocacy for medical marijuana. I ask what his secret is for enjoying life in the face of acute myelogenous leukemia (AML), the fourth cancer of his lifetime. A cachectic man in glasses, he shrugs his shoulders. “I keep busy. I have a lot of hobbies, I guess.” He smiles. None of my patients, no matter how uneducated or how poor, none of them are stupid. They read us better than we can. In 823, a 70-year-old woman with multiple myeloma and a brain bleed is “altered.” Bed rails up. She cries during every attending rounds. “Emotionally labile,” I write in every progress note. On her penultimate rounds, we talk about the plan. She halfgrins. “There is no plan. I’m dying.” She’s right. We change the goal to home. And I learn we don’t keep patients captive. The next day I see her for the first time not crying. The ambulance crew is here to take her home. I hold her wrist. “We’re springing you out of here.” Her smile, a true smile, is so powerful that I have to rub my eyes. Kyle, in room 802, is my last patient before I sign out of 8A. He’s a guy my age from East Greenwich with metastatic melanoma of the leg, adrenals, and brain. He comes here for inability to walk for five days. For the past year
he had been through multiple operations and chemotherapies for melanoma. The leg is swollen, foulsmelling, covered in metastases. Kyle shakes his head, embarrassed. We treat him for a possible cellulitis, but suspicion is low. This is cancer. He lies in bed, wincing from the pain that he says is a 4 out of 10. He’s wearing a gray T-shirt with a family crest that reads “House Lannister,” an ironic nod to the villainous clan of the TV series Game of Thrones. I like him instantly. I ask him how he’s coping with his illness. “I’m OK.” He scratches his overgrown beard. “I have what I have, it is what it is.” Over the week, Kyle and I say good morning, chat about what’s on television. His pain score of 4 means he still can’t get out of bed. He rarely asks for his “asneeded” Dilaudid, so I order a pain pump with a button. He pushes it twice an hour, maxing it. “Are you in pain?” I ask the next morning. “Still about a 4 or a 5.” We go up. A week goes by. Second-to-last day on Hem-Onc. The dog refuses to poop, and I am running late. My wife, a resident in the ICU, calls me in the car. “They are coding Kyle. Come quick.” I speed up. I go down the hall toward Kyle’s room. I see his girlfriend, her face red from grief. The code team is down the hall. In Kyle’s room he lies in the bed with a nonrebreather mask and a respiratory therapist ready to intubate. He’s thrashing around uncomfortably, eyes closed, trying to pull the mask off. I see his mother walk in. A retired OR nurse here, Fran has a long face and tired eyes. The senior resident running the code informs her that Kyle has had a seizure. “I know he’s technically Full Code, but I would hate to intubate him without talking to you first.” She shakes her head “no” repeatedly. I sense the night team is disarmed by a mother who prioritizes comfort, not the ICU, for her 34-year-old son. But they don’t know. Kyle’s mother holds out her hands. “What are we going to do when he's intubated?” The resident responds, “Well, that just buys us time so we can get him to CT.” “And then where? I know what he has.” I feel tension, so I speak. “I think keeping him comfortable is a very good decision, actually. That’s what a good mom would do.” Fran grabs me and cries. My job now is to make Kyle comfortable. Dr Martin, our palliative care consultant, guides us. Ativan and Haldol every hour as needed, Dilaudid PCA drip. The pharmacy pages me to confirm this is what I meant to order. Yes. I walk back in. The room has changed. No more respiratory therapists—crash cart is gone. No more JAMA October 16, 2013 Volume 310, Number 15
Downloaded From: http://jama.jamanetwork.com/ by a University of Arizona Health Sciences Library User on 05/27/2015
1565
Opinion A Piece of My Mind
thrashing and moaning, now he lies in bed sleeping. Scrub nurses and unit secretaries, family and close friends, sit around the young man. Kyle’s girlfriend lies spooning him. I am overwhelmed by kindness and good will. I get the pieces of my patient I forgot to ask. Was he a good boy? Yes. He was in Pearl Harbor for four years. He loved video games, his girlfriend, his country, tattoos, kilts, and the navy. He was a “coner”—worked at the head of the submarine in sonar. He was adopted. His aunt says, “They went to the baby store and got Kyle.” His breathing changes. I begin to doubt myself. Could we have reduced the swelling with a higher steroid regimen? Could we have saved him if we didn’t focus on treating the leg wound, and instead went after the cancer with chemo? The “what-if’s” push families and physicians alike to madness. It precludes healing and does nothing for the patient in the bed. When I think of all the survivors who feel guilty or angry when a son dies, I think of when Kyle and I first met: I have what I have, it is what it is. A silence falls on the family. I speak up. “I just want to make sure there are no feelings of guilt. This was an aggressive disease. He is very brave. Now it’s all about love.” Father Ranallo stops by to give Kyle his last rites. I am outside at the nursing station, standing guard. He comes out of the room. “Beautiful family,” he says. “He’s lucky,” I reply. I’m called back into the room for stopped breathing. The family goes to the lounge to wait. I put my hand on Kyle. He becomes tachycardic, so I become tachycardic. I rub his shoulder. “We’re okay, Kyle. We’re okay.” We wait together. It passes. I can’t declare the exact time because there’s no one moment. I pull up the covers to keep him warm. I close the door on my way out, massaging my forehead. I feel something that I haven’t felt in eight years: shame. Shame that my testicular cancer was curable and his melanoma was not. I want to go back into Kyle’s room one week prior. I want to go beneath just the talk about Game of Thrones and Married With Children. I want to tell him why I really got into oncology. I want to tell him that I too had operations and chemo as a young man. That I’m on 8A along with him. That 8A is just a synecdoche, a thing standing for more than just a floor, but a community of patients and families who feel how Kyle feels: in pain, embarrassed, and with no choice but to face reality. Dedication: For Kyle and the rest of 8A. Additional Contributions: I would like to thank Fran Courtney for allowing me to take care of her
1566
I begin to miss Kyle, our mornings, “bullshitting” about TV, tattoos, and Rhode Island. Our conversations were short, but the punctuation filled with our uncertainty about the future. I go see Fran. She gives me a hug good-bye. “In a few weeks, I’ll bring you some baked goods.” “My wife’s covering 8A after I leave,” I say. “I’ll ask her to page me.” I go back into the resident lounge. Thankfully, Hem-Onc is not intensive care. When patients die, we come together—nurses, secretaries, physicians—to heal. I usually say something like, I’ll miss her smile. Or, he was a nice guy. We don’t have to be profound, we just have to be true. In the act of talking we process what would otherwise make us cold. In the act of writing we remember what we said. I confide to Rob, my senior. “Poor Kyle. My only wish is that I could have sat with him for longer, and talked.” Rob nods, then pauses. “You know, when I talked to him, I got the sense that wasn’t what he wanted. What he wanted was a doctor to treat his pain without making him feel embarrassed. You gave him the button before he died.” I seek support from my attending, Dr Quesenberry, who heads the division. An avuncular man, he leans back in his chair. “Even when you think you can’t do anything, they need you. You serve a very important role for them.” He clasps his hands. “You heal them.” Second-to-last day on Hem-Onc. I pull out the list of “8A Survival Tips” written by those before me. Make sure you check for fever in your neutropenics. Chemotherapy has a lot of fluid in it— watch for heart failure. Important orders not to forget: DVT prophylaxis, morning labs, coverage, diet. I draw a line and begin to write. “Code status is impermanent. If your patient is dying, talk to the family, tell them the prognosis. Give them your gut call. We can’t always prevent death, but we can always control how it happens. A good death on 8A or at home can be better than a tragic death in the ICU.” Home Sunday morning. I hold the dog in my arms, swaying to Dylan. My rotation ends on Monday. I have 24 hours to write. Where to begin. I text my father: “Pronounced my first patient yesterday. Nice young man with melanoma. Beautiful family. An honorable death. Still want to be an oncologist.”
son. I would also like to acknowledge Tovah Tripp, MD, for her editorial guidance, and for calling me.
Disclosure of Potential Conflicts of Interest and none were reported.
Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for
JAMA October 16, 2013 Volume 310, Number 15
Downloaded From: http://jama.jamanetwork.com/ by a University of Arizona Health Sciences Library User on 05/27/2015
jama.com
