Hi everyone! My name is Gemma, I’m a researcher in Paediatric Palliative Care and a SIOP YI Board member. As part of our Mental Health Month, today I am posting on behalf of my colleague Dr Ellen M Henderson, who shares her experience of working on a longitudinal study of decision making with children with brain tumours. Here’s what Ellen has to say:
I began working on the “Decision-Making for Children with High-Risk Brain Tumours” project (funded by The Health Foundation) in February 2014, approximately 24 hours after I moved from a smaller city in the South West of England to London. I moved specifically to work on this project. The study, unlike others I had worked on before, used an ethnographic participant observation methodology. This method meant I was present everywhere that my three groups of participants (paediatric brain tumour patients, their parents and families and their clinicians) interacted. Data collection ran over the course of the illness trajectory of brain tumour patients who had a <20-30% chance of survival for two years. In practice this meant spending sometimes up to twelve hours at meetings where diagnoses, progression and treatments were discussed; at consultations or ward rounds with neuro-oncologists, clinical oncologists, nurses, surgeons, palliative care team members and other health care professionals; on home visits where I sat with family members and clinicians caring for children who were dying; sitting by hospital beds where treatment was delivered; talking about birthday cakes, playing with toy cars and watching Disney’s Frozen. So. Much. Frozen.
It was my job for the twenty months of data collection to know everything about these three groups and keep all their secrets along the way. I sat in numerous waiting rooms with anxious parents knowing that their consultant was about to tell them their child could have no more treatment and would have months to live. I listened to doctors tell me how difficult they found hugging their own children after spending their day caring for a dying child the same age. I sat with children who pretended not to know they were dying but when their parents left the room they made me promise to call their parents after they died to make sure they had someone to talk to.
It was my privilege in this job to be given access to patients’, families’ and clinicians’ lives and it was my role to document it accurately and without emotion as best I could so that this privilege would not be squandered. One mother described it as my job to make it better for the family that came along after hers – a tall ask.
I would be lying if I didn’t tell you it was hard. It’s lonely to be the only observer of someone else’s distress. I spent the majority of my evenings falling asleep in front of American police procedural television shows about an hour after I got home, incapable of engaging with anything else. I tried to eat well and spend my weekends doing something which made it hard to think about the hospital or my job. I insisted my friends tell me all about their day even when one once told me that her bad day couldn’t possibly be as bad as my bad day because “nobody died”. I used every opportunity to visit my mother for top ups of her baking and naps with our family dog. I booked a long holiday for the week after data collection closed so that I had something to look forward to. I also availed of all support available to me through my employers to talk about interactions that I found particularly upsetting – in our weekly research group de-brief meetings, in my boss’s office which was always open, with my clinical supervisor. Sometimes even now, 18 months after the study closed my patients have the odd cameo in my dreams. More so as the analysis of the data continues.
As hard as this job has been I am one of the lucky ones because it doesn’t make me sad. But do not mistake that for a lack of empathy. My role required a detachment and understanding that these clinicians, children and families needed my eye to be dry and my presence to be a constant so that they could focus on the people whose feelings were truly important – their own. And it was my duty to take care of myself so as not to burden any of my participants along the way.
Dr Henderson’s post is supported by Great Ormond Street Children’s Charity (508605).