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Childers, MD^1 Author Affiliations Article Information * ^1Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania JAMA. 2022;327(15):1449-1450. doi:10.1001/jama.2022.4619 visual abstract icon Visual Abstract editorial comment icon Editorial Comment related articles icon Related Articles author interview icon Interviews multimedia icon Multimedia It's my last clinic session before Christmas. When the phone in the pocket of my white coat rings, I am startled to see my sister Liz's number. Our 85-year-old mother had recently been diagnosed with duodenal cancer, and she is scheduled to get a port placed for chemotherapy today. But Liz's first words are, "It's not Mom. It's Dad." My father's nursing home, unable to reach my mother while she was in the operating room, called Liz. Dad was becoming more lethargic and eating and drinking less. His laboratory tests showed a creatinine of 6.7 mg/dL with a blood urea nitrogen of more than 100 mg/dL. They were asking Liz if they should send him to the hospital. I have been a palliative medicine specialist for more than a decade. Medical teams consult me for the most difficult discussions. I know how to build a picture of the future--and how and when to share that future. For me, these conversations are as automatic as hanging my stethoscope around my neck and clipping my pager to my belt. I often tell learners that bad news floods the brain with emotion so that it is not a good time for decision-making. But as I leave clinic that day, my medical brain comes back; what happens if Dad goes to the hospital? I can hear the case presentation: A 90-year-old man with moderate dementia admitted with acute on chronic renal failure. The next steps: place an IV for fluid resuscitation and a catheter to measure urine output. Consult nephrology to spin the urine and determine that his kidney failure is, as expected, prerenal but get an ultrasound anyway just to be sure there is no obstruction. My father, even before developing dementia, had been cantankerous, apt to verbally swing without provocation. Now he has a vague perception of something wrong, plastic tubes hanging out, an irritation and burning in his arm where an IV line resides. He reaches up to get this interference out of his way. Next there is something on his wrists preventing his arms from moving. His struggles lead to being bound tighter and another tube is placed, this one hanging from his nose. He descends into semiconsciousness. Maybe he emerges, weeks later, in an unfamiliar room at the nursing home. His CD player is gone, and his book of haiku. It's not long before they send him back to the hospital. My sister, mother, and I are finally able to confer while I drive in the dark to pick up my dog from day care, the cell phone projecting through the car speakers. Like so many of the families I care for, clinicians presented us with a choice without offering any guidance. As I help my dog into the back seat, I reluctantly accept a role that none of Dad's official caregivers have offered to fill. I paint the picture of a longer life, but with worsening confusion in more unfamiliar environments. Hospitalization might help him live a few months more, maybe even a year or 2, but we need to decide if that tradeoff would be worth it to him. We all know that my father had loved classical music, poetry, and giving chess lessons at the neighborhood elementary school where he had volunteered. He has been able to enjoy at least the first 2 in the memory care unit where he has been for 8 months. I can guess how he might feel about medical treatments. I have never heard of my father seeking medical care for anything that wasn't acutely bothering him. As I act as the doctor, asking the questions ("What would Dad have thought about this situation?") 3 seconds later I join in attempting to answer them. Yet I wonder how much I am steering the conversations in a convenient direction. I have never been especially close to my father. My sister and I are already beginning to worry individually and silently about how we will manage his care after our mother dies from cancer. How am I to be the doctor here when I am also the daughter who has a troubled and distant relationship with a person who, if he lives, will cause me great personal inconvenience and expense? In the end, we are fairly sure. When my mother enrolls him in hospice, the nurse tells her blithely, "People in hospice can live for months." Five days later I am driving to Virginia to see him for the last time. My sister is scheduled to leave for London the day after Christmas and asks me if he will survive until she gets back. When I see him in the bed, wan, cheeks hollowed, only able to mumble a few words, I tell her, "No." The next day, when I have returned home and to the hospital to cover Christmas Eve, I get the call that he is gone. I text my husband, get no immediate response and go on rounding. Tears threaten to well up when the husband of an elderly woman who is dying of cancer approaches me outside the room to ask whether he should call their children in from out of town to see her. I envision a stone wall between the doctor me and the daughter me, built up brick by brick, and go on. Six months later, I am again rounding on the inpatient palliative care service. After our daily meeting, I dial in to my mother's visit with her oncologist in Virginia. I can tell by the doctor's voice that something is wrong. She is feeling weak and having trouble standing up. He sends her to the emergency department. In an hour, I am expected in the intensive care unit to help the family of an elderly patient decide whether to place a tube for artificial nutrition. I go. I perform entirely by rote. Then I get in my car and drive to Virginia. At the hospital, my mother's medical team consults oncology, cardiology, and palliative care. I am there every day from 9 am to 5 pm, as far as most of them know, just a daughter. In between unpredictably timed visits from specialists, I work on my laptop by her bedside. I have a phone meeting to plan for next year's medical education research conference series. I write a draft of a manuscript. On hospital day 4, after an oncologist has stood at the edge of Mom's bed to deny that a biological treatment was ever an option, the palliative care team comes by to discuss hospice. As so many patients do, my mother responds, "I'm not ready for that yet." If she were my patient, I would explore gently, asking, "Tell me what you know about hospice?" and respect her decision even if I disagreed. What I say in that particular room is, "No Mom, you NEED hospice. For my sake." She agrees. Later, when the hospice social worker comes by to meet her, Mom asks what hospice can do for her. I automatically launch into the speech I have given a thousand times and interrupt myself after the first sentence, saying to the social worker, "You go ahead." When the hospice nurse visits her apartment a few days later, Mom looks healthy, and tells them her life story while sitting in a rocking chair wearing a long, flowered skirt. The nurse asks the next question on her intake form, "So do you want CPR?" Mom hesitates. Before I even have the chance to think, "That's a horrible way to have a code status discussion," I find myself interrupting: "No! Mom, you're DNR!" She agrees. I know that what was coming--I know that untreated cancer is like walking a plain that slopes imperceptibly downward in a way that you come to expect could go on forever until a sudden swift drop. One day a few months later, she needs my help pulling her out of a chair. Then she is spending most of the day in bed. She asks me, "When is the chemotherapy that's making me so tired going to wear off?" I pause. Who am I to give this news? How much would I say if I were the doctor, and how much should I say as the daughter? I answer, "No, Mom, this is the cancer." I have spent months bringing her novels. Now, she can't hold up a book. One morning, after I have helped her from the bathroom back into bed, using all my strength to lift her, comes the question, "How can I end this?" It isn't the first time I have been asked for aid in dying. I have taught this conversation. I know how the doctor should respond--explore, empathize. But as the daughter I don't have to ask what is behind the question. She is envisioning months of lying in the bed, condemned to never feel a breeze again. I choke out an answer: "Don't worry Mom, it won't be long." Liz takes the week off to be with her. I feel I need to go back to work. Two days later, Liz calls me while I am walking down a hospital corridor to ask if it is happening today. I ask, "What does she look like?" "She can speak a few words. She is a little bit awake," she tells me. "No," I say, "We have a few days." I am wrong. The next call interrupts "Amazing Grace" on my headphones as I am walking back from the gym the next morning. When I see my mother's number, I expect it is her home health aide asking me what medication to give her. Instead: "She's gone." For a few crazy moments, I wonder whether I can go to work at least until I finish giving a talk at noon. Then, I let go of it all and pack up the car. Section Editor: Preeti Malani, MD, MSJ, Associate Editor. Back to top Article Information Corresponding Author: Julie W. Childers, MD, Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, University of Pittsburgh School of Medicine, 200 Lothrop St, 9W, Pittsburgh, PA 15213 (childersjw2@upmc.edu). Conflict of Interest Disclosures: None reported. Additional Contributions: I would like to thank Andrew Thurston, MD, for editorial feedback and my sister for allowing me to share our family's story. Dr Thurston was not compensated for his contributions. Comment Limit 200 characters [ ] Limit 25 characters [ ] Conflicts of Interest Disclosure Identify all potential conflicts of interest that might be relevant to your comment. 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The following information is required and must be completed in order to submit a comment: Thank You. Your comment submission was successful. Please allow up to 2 business days for review, approval, and posting. JAMA 2 Comments for this article EXPAND ALL April 21, 2022 "Only the Wearer Knows Where the Shoe Pinches " Anjana Bhan, MBBS, ABIM Endocrinology | Max Healthcare, New Delhi, India Thank you for sharing your thoughts . It's not easy being a daughter or son to your parents and their treating doctor at the same time . Many of us have gone through what you wrote about. Many of us have not been able to treat a parent who is suffering from a chronic illness that falls within our own specialty. Sometimes it's because we don't want our thinking to be biased or clouded because of our relationship. Sometimes it's because one doesn't want to miss or neglect a relevant issue because of the confusion in our minds. Sometimes the illness is so all-consuming that one cannot professionally do justice to one's own practice and treating a parent at the same time. Whatever one's personal equation in this situation, it's not simple. To be a bystander -- a knowledgeable, skilled yet passive player in these circumstances -- is heart-wrenching, which only you are aware of, and it hurts, because both as a child of your parent and as a professional doctor you always want the best. Only the wearer knows where the shoe pinches. CONFLICT OF INTEREST: None Reported READ MORE April 24, 2022 It's Never Easy Leonardo Vando, MD | I want to thank you for sharing your story, which is inevitably one we all share. Being physicians does not have to make it harder than it is. I think one of the takeaways is self-care. We all grieve differently but we all need to allow our process to unfold. We physicians suffer from a notorious lack of self care. I am guilty of it on a weekly basis, when I fail to block time off to be with my family. When I read your story I kept telling myself: oh my goodness, she went to see a patient right after losing her father! I know, I have myself buried in work to avoid pain. It's hard. Take care of yourself. CONFLICT OF INTEREST: None Reported READ MORE See More About A Piece of My Mind End of Life Humanities Narrative Medicine Shared Decision Making and Communication Geriatrics Download PDF Cite This Citation Childers JW. Goals of Care. 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