What I know stays outside

Written in memory of her father, WAN Huan’s personal reflection explores her sudden loss to reveal how clinical knowledge breaks down within rigid hospital hierarchies, and why medicine requires humanistic empathy when silence, shock, and grief leave families speechless.

I am not an ordinary family member of a patient. I work in the administrative office of a tertiary hospital in Shanghai, China. Although I am not directly involved in clinical care, years of experience have given me fluency in the language of medicine. Yet, during the ten hours when my father was transferred out of the ICU only to be sent back, I discovered the limits of that knowledge – not because I lacked understanding, but because, within the hierarchy of this system, a family member’s knowledge carries no inherent authority.

On July 12, 2022, my father was admitted to a hospital in a mid-sized city in central China with a cerebral haemorrhage. That night, he underwent a decompressive craniectomy. After the surgery, I began keeping a record of his temperature, blood pressure, heart rate, level of consciousness, bowel and bladder function, and every detail of his treatment.

A temperature of 38.5°C, an elevated C-reactive protein, and white flocculent material in the cerebrospinal fluid drain all pointed to the spread of intracranial infection. The switch from meropenem to tigecycline signalled the emergence of drug-resistant bacteria. I had worked in a hospital for five years – I knew these signs all too well. I assumed that this knowledge would be of use.

At 2:00 p.m. on July 27, my father was transferred from the ICU to a general ward. We took this as a sign for improvement. That day, I continued my record. His temperature dropped from 38.3 to 37.4, his blood pressure fell from 170 to 140, his oxygen saturation remained above 98%, and his pupil response returned. Every indicator told me he was improving. I believed he was truly getting better. 

But I came to understand that data can only describe the past; it never foretells the future. It told me how things were at the time, but not what would come next. Like any ordinary family member, I had no idea what tomorrow would bring. This is the first limitation of knowledge: data could not eliminate the uncertainty.

Gunnlaugsdóttir et al (2024) describe this state as emotional limbo – a suspended state of waiting, caught between hope and despair, not knowing whether the patient will improve or decline, not knowing whether to hold on or let go. Uncertainty may never be eliminated. If a doctor had said, “We don’t know what will happen next either, but we will face it with you,” that sentence would not have erased the uncertainty, but it would have assured the family that they were not alone.

At 11:00 p.m., the cerebrospinal fluid drain became blocked. Inside the tube was white flocculent material. I knew this pointed to a postoperative intracranial infection, but knowing was of no use. The nurse glanced at it and walked away. Her expression said it all: this patient was too sick, too much trouble. I could read her expression, but there was nothing I could do. I had no power to make this patient “less troublesome”. A moment later, his oxygen saturation suddenly dropped to 90%. I went to find a doctor, but there was no doctor on duty, only a nurse. She said, “send him back to the ICU.” It was not a suggestion; it sounded like an order. I did not argue. All I could do was nod and push my father back to the ICU.

That night, no one stopped to consult with me. My role was not that of a decision-maker, but simply a receiver of notifications. Not because I lacked understanding, but because within the hierarchy of this medical system, family members are usually an after-thought. Doctors hold the authority because they hold the knowledge, so they call the shots. I understood all the medical terms, but I stood on the powerless side of that line. As Pilnick et al. (2011) have argued, asymmetry lies at the heart of the medical enterprise—it is founded in what doctors are there for. That is, doctors are socially authorised to diagnose and treat, to call the shots, while patients and families are expected to comply.

This points to a deeper issue: the coupling of knowledge and power is not natural. For knowledge to be converted into power, it requires a role recognised by the system. As Fricker (2007) argues, epistemic injustice occurs when knowledge is dismissed not because it is false, but because the knower lacks a socially recognised role to be heard. Physicians possess that role, so their knowledge becomes decisions. My knowledge remained, but my role was only that of a family member, so my words carried no weight. This is the second limitation of my knowledge: not the knowledge itself, but the system’s refusal to recognise it—not because it was wrong, but because of who I was. That night, no one stopped to ask me, “What do you want?” This is the deepest pain of the power asymmetry—not that I was denied the right to decide, but that I was denied even the dignity of being asked. In such system, there lacks a mechanism for shared decision-making: the physician explains the reasoning behind the recommendation, the patient and their loves ones describes who the patient is as a person, and together they deliberate.

As midnight approached, we pushed my father back to the ICU in a daze, our minds blank, our bodies moving on their own. No plan, no words, just the bed rolling forward. This was no one’s fault; the nurse truly could not manage the situation. The problem was that the ICU deemed my father ready for transfer, but the general ward lacked the capacity to receive him. Once transferred out of the ICU, the patient fell through the cracks of care transitions—a fragmented system with no coordination, no handoff, no bridge between ICU and general ward. 

My knowledge alerted me to the danger, but my identity rendered my voice powerless. Individual awareness, no matter how clear, cannot fix a structural malfunction. This is the third limitation of knowledge: understanding what is needed does not give me the power to mend a broken system. In fact, this type of knowing carries a cruel irony—possessing the foresight to see a systemic disaster unfolding, while lacking any mechanism to stop it, only makes me feel more powerless and hopeless. I understood exactly what he needed, but the system simply could not hold him. 

Later I kept reflecting: if we had been present when the ICU physicians handed over to the general ward physicians; if the ward nurse had known that this patient had just come out of the ICU and required special attention—perhaps my father would not have been sent back so quickly.

After my father was pushed back into the ICU, what was happening inside? In the six hours that followed, the most critical hours, no one came to communicate with us. Was someone there to take over immediately, or did he wait a long time? I do not know. I understand how an ICU works, but knowing the process and knowing what my father was going through at that very moment are two different things. Once that door closed, it was a total spatial blackout. I was stripped of my sight entirely. Not because I lacked sufficient understanding, but because the system uses a door to separate those qualified to know from those who are not. This is the fourth limitation of knowledge: when the door closes, knowledge cannot pass through it. 

If, during those six hours, someone had walked out through that door in time to tell us, “This is what is happening inside, and this is what we will do next” – I might have felt that the door had not completely separated us from my father.

On August 11, my father was again transferred out of the ICU, to a general ward. But he never came home. After his second admission to the ICU, his physical condition deteriorated sharply.

Those ten hours took me from hope to disillusionment. It was not that I did not understand. It was that I understood, but that understanding had no place to land.

After my father died, I kept reflecting: if even I, someone who had worked in a hospital for five years and could read those numbers, was powerless in this system, then what of those family members who cannot read lab reports, do not understand antibiotic names, and do not know what white flocculent material signifies? When they walk to the ICU door, they do not possess the knowledge I had. When a nurse tells them to “send him back to the ICU,” they lack my intuition that something is wrong. When they stand before a closed door, they may not even know what questions to ask. The cracks I encountered—they will fall deeper into them. The cracks in care transitions are not one person’s struggle. This is a care gap shared by intensive care units worldwide (Hiller et al., 2024).

Across the four limitations I have traced, my knowledge had failed to eliminate uncertainty, failed to grant me a voice, failed to fix a fractured system, and failed to pass through a closed door. My reckoning with the limitations of my own “insider” knowledge demonstrates the vital importance of narrative medicine’s core capacities: attention, representation, and affiliation (Charon 2006). Yet, while recent scholars explore narrative medicine in Chinese end-of-life care (Li 2025) —a context where the family’s narrative authority is culturally embedded (Xie and Wang 2026) —what happens when sudden shock and rigid isolation leave us completely speechless? How can a system honour a patient’s humanity if it cannot hold the silent, fragmented trauma of their loved ones’ grief?

In my father’s ICU experience, the system lacked the relational empathy to catch us as we fell through its structural cracks; no one attended to our shock, represented his story, or affiliated with us in our bereavement. If medicine cannot open its doors to the silent weights a patient’s universe carries, will its greatest knowledge always stay outside?

About the Author

WAN Huan is a medical education specialist at Huashan Hospital, Fudan University, China. She holds a Master’s degree in Healthcare Management, and her work focuses on cross-cultural comparative studies in narrative medicine.

References

Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press.

Fricker, Miranda. 2007. Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press.

Gunnlaugsdóttir, Thórdís, Ragnheidur Jóna Jónasdóttir, Kristín Björnsdóttir, and Maria Elisabeth Klinke. 2024. “How Can Family Members of Patients in the Intensive Care Unit Be Supported? A Systematic Review of Qualitative Reviews, Meta-Synthesis, and Novel Recommendations for Nursing Care”. International Journal of Nursing Studies Advances 7: 100251. https://doi.org/10.1016/j.ijnsa.2024.100251.

Hiller M, Burisch C, Wittmann M, Bracht H, Kaltwasser A, Bakker J. The current state of intensive care unit discharge practices – Results of an international survey study. Front Med (Lausanne). 2024 May 7;11:1377902. doi: 10.3389/fmed.2024.1377902. PMID: 38774398; PMCID: PMC11106471.

Li, Fei. 2025. Narrative Palliative Care. Peking Union Medical College Press.

Pilnick, Alison, and Robert Dingwall. 2011. “On the Remarkable Persistence of Asymmetry in Doctor/Patient Interaction: A Critical Review”. Social Science & Medicine 72, no. 8 (April): 1374–1382. https://doi.org/10.1016/j.socscimed.2011.02.033.

Xie, Zexi, and Aeneas Zi Wang. 2026. “The Narrative Construction of Good Death in China: A Qualitative Study of Family Members’ Roles.” Social Science & Medicine 395: 119099. https://doi.org/10.1016/j.socscimed.2026.119099.