In the Dying Room

All names and defining characteristics in this post have been changed for privacy

Over the last few days, I have had the pleasure of participating in an observership with the Transforming End-of-Life Care Team. While I had planned to save any blog posts on the amazing work that this team is doing at University College London Hospital for the end of my time with the team, I was so struck with my experience yesterday that I knew I had to share a story now.

The Transforming End of Life Care Team at UCLH is unique to this NHS trust; it does not exist at every NHS hospital. For a bit of background, without getting too much into the weeds of my next post, TEOLC was established due to a recognized need for a differentiation between palliative care and end-of-life care. Palliative care physicians in the UK, much like in the USA, experience much confusion about their field; when approaching patients, it is common for families and patients to believe that palliative care means that someone is dying. While this can be the case, it is certainly not always as many times palliative care interventions offer symptom control care to patients who do not have a life-threatening disease. At the same time, some patients have life-threatening diseases and need specialized and holistic care during the months, weeks, and days leading up to death. Thus, doctors at UCLH and in London generally, have recognized the need to have a palliative care team that can support symptom control for all patients and an end-of-life care team that specifically focuses on end-of-life protocols, support for families, and innovative pathways through which doctors on all wards (departments in the US) can approach patients who are dying.

While much of my time with TEOLC has been devoted to understanding their numerous projects, protocols, and educational training, I have also seen the team in a clinical context. Tina, a nurse with the team, was the first to invite me to shadow her time with two families. While we were discussing the two cases from the office building across the street from the hospital, I felt nerves beginning to creep in; this would be my first true interaction with dying on my Watson journey. A million thoughts flew through my mind: how would the family seem, should I introduce myself or stand off towards the side, will they even want me in the room during this moment, what if I get teary-eyed or emotional while I’m in the room? All these questions and more filled my head with noise as Tina explained the reasons we were going to see each of the two patients. As she talked, she emphasized that there were medical reasons for each visit (adjusting medication, shedding medications that were no longer vital, adjusting fluids, etc.) but most often it was to hold space for the family. She says she often finds herself rounding on patients and spending extended time hearing stories about their lives or learning more about their families. While still nervous and unsure of what to expect, I found the idea of holding space and listening to stories exciting; I was finally going to get a chance to see so many of my ideas about narrative in medicine in action.

Tina and I then crossed the street to the hospital and made our way up to one of the inpatient wards. I could see immediately which room we were heading to because on their door was a picture of a swan, part of an initiative by the TEOLC team to signal to the rest of the ward that someone was dying in this room and encourage the utmost compassion and sensitivity for patient and family when entering (more on this project in post coming later this week). Tina knocked quietly and we entered. To my surprise, the room was not quiet; a show was playing on an iPad pointed towards the hospital bed, a hospital-provided radio played music, and one of the family members was laughing when we entered the room. The patient appeared to be sleeping soundly on their side, curled up as if taking a long nap. It was Tina’s first time with the family so she started by introducing herself and me. For a moment, we stood there in this makeshift circle with the patient at the apex, a sort of signal of the family inviting Tina and me into this intimate moment.

Then, Tina addressed why we were there; the family was concerned because their loved one was retaining fluids, causing their limbs to swell with edema and even leak in some places which they found distressing. However, they did not like the idea of stopping fluids because they thought it could lead to dehydration. Outside of the room, on our walk over, Tina had explained this issue to me already. The patient had reached the end stage of their illness. She had said that it was common for families to have a hard time with stopping small things that were very indicative of what a person who was going to return to health may need: water, extra oxygen, food, etc. But a person who is dying does not need this and, with organs slowly becoming unable to do their job, the addition of some of these things may become more harmful. In this case, their body was no longer excreting fluid normally, so with IV fluids still being administered at the families’ request, the fluid was building up under the patient’s skin and leaking out. As Tina explained this to the family, she alternated facing each one individually, holding their attention with her body language, and speaking softly and peacefully. It was interesting to observe the different reactions of the family as they processed this information – one remained quietly nodding, one agreed to stop fluids immediately, and a shy member of the group would sit silently and then decide to voice a string of many questions all at once. Tina stood with them all, adding poignant pauses for processing and questions to come up. As I stood witness, I was impressed by how she managed to care for each individual in the room, acknowledging that each person may feel differently about their sick loved one and may bring different emotions, questions, and concerns to the conversations.

When it seemed like the family was as satisfied as possible with Tina’s explanation, she asked if it would be alright to turn her attention to the patient. The family all agreed and I watched Tina get level with the hospital bed, greeting the patient directly and telling them exactly what she was about to do. She examined their limbs and noted the fluid retention before tucking them back in. She stayed down by their side, stroking their head softly, and noting how comfortable they looked. I noted the same; Tina had taught me to look at an unconscious person’s face for telltale signs of pain or discomfort. The patient was snoring softly but otherwise, their face showed no grimaces or signs of distress.

Tina stood once again and placed herself once more by my side, restoring the circle and reconnecting everyone in the room. She asked once more if everyone was alright with the decision to stop fluids for the moment as it was likely causing their loved one to be more uncomfortable. Two of them nodded but Tina and I both noticed that the third was a bit more reserved, and their face showed worry. Tina asked this family member more directly if there were any concerns. After insistence on feeling fine, Tina and I could see that the family now wanted to continue their visit alone. The space that we all shared now needed to become just the family’s once more. Again, Tina turned to each of them, thanking them for letting her share their space, and promised that she would check in again tomorrow, if they would like, to see if more concerns or questions could be addressed. The family seemed to like this idea and so we exited.

Once outside the room, I was at a loss for words. I was impressed and emotional over so many things. Notably, I was amazed at the calm with which Tina navigated the room and was able to balance all the different personalities while still taking the time to share a moment with the patient individually. Not only did this show the family that the clinicians still cared about their loved ones’ well-being, but it also emphasized the dying person’s humanity in a subtle but unmistakable way. I was not sure how one learns to make something so difficult appear so natural and of course, I shared this with Tina. She assured me that it took much practice and that eventually you develop a sort of script but are careful to customize it each time to the different dynamics of each patient’s family and loved ones. Even with her reassurance of practice, there was a certain intangible quality to Tina that I can’t quite describe succinctly; her presence engendered calm through words, tone, and body language while her physical being – her placement in the room, her creation, and manipulation of the space itself – invited everyone into an impermanent but shared community. I knew immediately that this quality isn’t necessarily taught but unique to those who are drawn to end-of-life care.

Secondly, I was amazed by the space and moment itself. For all the fear I had about entering it, I found myself quite astounded by the amount of life in a place of dying. The music blaring, the patient’s favorite show playing, and pictures of family and friends littering the windowsill – all of which told the true story of the patient lying in the bed in front of me. Even as we talked about the details of the impending death, life continued around us; the family chuckled here and there, recounting stories of infamy at local pubs, spoke of a recent wedding, and one family member’s ringtone, a funny and loud song signaling their partner was calling, cut loudly through the middle of our conversation. Life persisted even through this moment and, I would argue, fought loudly and exuberantly to be noticed and present for the family, Tina, and me.

While my experience in this dying room is one of many, likely variable, experiences I will have amongst the seriously ill and dying this year, I imagine that it will set a standard. I now will be searching for the way that living demands a place alongside death.  I would wager, based on just my first few weeks alone, I will come to find that this year will be just as much about exploring life as it will death and in some ways that quiets the fear I felt before entering into the patient's room. If you take nothing else from this post, I hope you at least felt a bit of Tina's calming presence through the screen or thought about what music you might like at your bedside. I hope you felt some of the life that made the dying room far less scary, and in many ways, familiar. Most of all, as this year continues, I hope I can continue to use this space for writing to cause you to pause and think about death and watch your own fear grow quieter.