Palliative Medicine: At the Extremes of Life
Experiences of Palliative Care through the eyes of twin sisters about to graduate as doctors in the NHS.
Throughout medical school, we’ve both been incredibly lucky to have had the chance to work with Palliative Care teams in the NHS (and abroad!). It has given us both a great appreciation of patient-centred, holistic medicine, where the patient is not simply a combination of their ailments, but a human being, whose value is not diminished just because they are nearing the end of their life.
These are our reflections on significant experiences of Palliative Medicine in both the Paediatric and the Adult setting.
Part 1: Paediatric
It’s strange how the details of significant events stay with you long after they have happened. I remember this day vividly, and will undoubtedly carry it with me for the rest of my life. The Paediatrician was dressed in long boots, a turtleneck dress and a brightly coloured scarf. By the standards of our South African counterparts, it was a chilly winter day. By UK standards, we were enjoying a heatwave. I was sitting in a small consultation room in the offices of the Paediatric Palliative Care Service serving the local children’s hospital where I was carrying out my medical elective. Surrounded by countless soft toys, rattles and play mats, it felt about as far from a doctor’s office as you could get.
Our third patient of the day was a 6-month-old baby boy and his parents. This was their first visit to the service since they had received the news of their son’s congenital heart defect, which surgeons had deemed unsuitable for surgical repair. They walked into the consultation room, heads lowered and eyes watering.
The Paediatrician began her questions exploring their family life in depth - how many children did they have? What did they do? Where did they live? Finally, we got to the diagnosis and how they found out. The story was as heartbreaking as you can imagine, maybe even more so. Less than 6 weeks ago, their son had been unwell with flu-like symptoms and was admitted to hospital. What they initially thought to be a simple chest infection was revealed to be an incurable, life-limiting diagnosis. All the while, the little boy sat contentedly on the playmat, the sound of his rattle providing paradoxically happy background noise to the conversation. Blissfully unaware of the uncertainties his future held for himself and his family.
Hearing the parents speak about how they had felt since they found out the diagnosis was heart-wrenching. At one point, the child’s mother asked - ‘Was it my fault?’. I felt a lump rising in my throat, reduced to this by the thought that the child’s parents could have thought that they were at fault. More questions followed from the parents, this time complex and relating to the condition. I admit I got a little bit lost in the Medicine of it all, as we often do with interesting cases. Not moments later, I was brought back into the reality of the situation by the tears welling up in the mother’s eyes and the quiver in the father’s voice.
Alongside this overwhelming sadness was an incredible amount of respect for the Paediatrician. She remained calm, collected and empathetic throughout the consultation, able to manage expectations realistically without losing hope altogether. This was without a doubt one of the most difficult conversations I had ever had to witness, and she made leading it look effortless.
Afterwards, I felt so unbelievably guilty. How could I, someone who could not even begin to understand their pain, be upset by this situation? It can be easy to become accustomed to death as a normal part of medicine, and in some ways, I know this is absolutely necessary. But having an emotional response to difficult situations should not induce guilt - it should remind us of the humanity involved in what we do.
Part 2: Adult
“I’ll see you next week.” It’s a simple sentence. Maybe one you’ve heard your friends or your family members say after a meeting or on the phone. And we take it for granted, that certainty we place on the future.
I was in the first week of my elective project in Palliative Medicine, shadowing a wonderful registrar. It was Friday afternoon, and we were on the Oncology Ward, seeing the last patient on the list. We walked into the bay, and gave ourselves as much privacy as is afforded by most hospitals bays by drawing the curtains around us. The registrar pulled up a bench and beckoned me to sit with her at the patient’s bedside.
“So, how have you been managing?” She asked, starting up the conversation. I say conversation rather than consultation because that’s what it felt like. This was (and still is) something I love about Palliative Medicine - the humanity of it, the realness of it. It is one of the few specialities I’ve experienced where patients are treated as anything but. You ask them about their lives, about their worries, their hopes. You ask them about their family and friends, not just as an ice breaker or a conversation filler while you faff at your computer, but because you really want to know what they have to say. It’s one of the few medical specialities that focuses on the person as a whole, not just the part of them we’re able to “fix”.
The registrar and I spoke with the patient for about an hour, discussing various aspects of life and illness. We talked about things that troubled her and how we could address them. She told us how she was looking forward to being transferred to the local hospice over the weekend, and how she’d heard wonderful things about it. The registrar turned to me and then back to the patient, smiling. “Well, you’ll see a familiar face once you get there - our medical student is doing her placement there next week.” I know it sounds strange, but this filled me with comfort. The start of a new placement or job can be frightening; knowing that someone would recognise me there filled me with a sense of comfort. The patient turned to me and said, “That’s great! I’ll see you next week.”
The following Monday, I showed up to the hospice’s board round [jargon alert: essentially a seated ward round to discuss all the patients before seeing them]. I eagerly scanned the handover sheet, looking for my patient’s name. Nowhere to be found. I checked a few more times, thinking maybe I’d gotten it wrong, but still nothing. Later that day, I asked one of the junior doctors about the patient, wondering if maybe her transfer had been delayed or she’d not been added to the handover list yet. Unfortunately, I was told she had died over the weekend, and had never made it to the hospice.
You’d be surprised, how much it can affect you. One conversation was all we’d had, but the sadness of the news resonated with me as if I’d known her for much longer. Reflecting on this, I considered why this might have been. Maybe it was because she was so kind. Maybe it was because she was the first patient I had known to die. Or maybe it was that, despite knowing she suffered from a life-limiting illness, I was just expecting to see her next week.
Neither of us know whether our future lies in the field of Palliative Medicine, but what we do know is that our experiences in this field have already had a huge impact on our future careers, for the better.
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