I’m Dr Sam Quinn and I joined the Glasgow End of Life Studies Group as a Research Associate on the Dying in the Margins project in July 2021. My background is in qualitative research and I have worked on topics encompassing learning disability, dementia and forensic settings. By way of introduction, I have written an account of the recent death of a close family member and how this has shaped my thinking around the Dying in the Margins project. Those involved gave their permission for this account to be published in the blog.
My father-in-law lived with a life-limiting illness that required a heart transplant. He had the transplant 24 years ago, but his health took a downturn four years ago and, subsequently, he required frequent hospital visits. In 2019, he was told he had 18 months to live.
Although both he and the family were anticipating his death at some vague point in the future, he continued past the 18-month prognosis, and it felt as though he would be around forever. He did not let his condition get in the way of living as full and active a life as possible, despite living through a global pandemic.
Sadly, after a brief spell in hospital in June 2021, it became clear he was approaching the end of his life. He discharged himself and moved back home. The urgency of the situation was not immediately apparent to me in the first few days. As a family, we were used to periods where he would be unwell and then suddenly rebound. However, when the Marie Curie nurses started visiting, the reality started to dawn a little. Nevertheless, I did not anticipate the speed with which events would play out.
My mother-in-law called at 6.30 am on a Monday morning and told us that he was extremely ill. After picking up my brother-in-law, we arrived at 7 am. The house was busy with nurses coming in and out. I spent that morning fetching food and shopping that we thought we might need for the coming days and weeks. At lunchtime, the nurses were still discussing the possibility of having a hospital bed delivered to the house. By this time, all of the family was there and were able to spend time with him. It was a very hot and humid day. My mother-in-law had purchased a nebuliser to help with his breathing, which the family took turns in administering.
In the afternoon, he had a syringe driver fitted and it became clearer that we should be thinking in terms of hours rather than days. Thinking there would be some time, I picked up food for the family from a drive-through five minutes down the road. As I walked through the front door, my wife called for everybody to come through urgently. I dropped the food and ran through. He was unresponsive and it became clear that he had died.
I chose to illustrate this account by recreating photographs of key objects that I noted on the day. Receipts from buying things we thought might help the situation, the half-eaten cheeseburger thrown aside when rushing through to the bedroom, the nebuliser that helped to ease his breathing, and the clock, moments after he died.
Receipts, a half-eaten cheeseburger, a nebuliser and the clock on the wall giving the time of death.
I found looking through a research lens at the last 24 hours we spent with him to be helpful, both in terms of dealing with his loss but also shaping my thinking towards the study. In the 24 hours before his death, we spent over £400.00 on items we thought would help him or ourselves get through the day. Some of our key purchases included:
- Nebuliser (£60.00)
- Shorts and t-shirts (£40.00)
- Electric fan (£27.99)
- Petrol (£20.00)
- McDonald’s (£19.00)
- Takeaway (£20.00)
- Cleaning supplies (£10.00)
As a family, we were fortunate that we were in a position to be able to make these purchases. For me, this experience highlighted the unexpected expenses that can occur at the end of life. We were able to buy equipment to make my father-in-law more comfortable, use the car to pick up family and shopping, even order food when we were too busy to cook. People who are struggling to get by financially and who have money worries are not always able to make these one-off purchases, just one of many factors that may impact the ability to have a ‘good’ death. This experience is something I will be mindful of and continue to draw upon as we progress in the Dying in the Margins project.