Dying young. 

Dying remains taboo, it probably always will remain taboo in most people’s minds as well, that is something that may never change across different generations and cultures. However, as a nurse working within palliative care, I am more biased to encouraging people to being more open to the discussionsurrounding death when the time comes. However how does this conversation change when your patient is in their young 20’s? Does this conversation change?

I strongly believe the way we nurse a palliative patient changes on each individual case, there definitely isn’t one size fits all in palliative nursing and sometimes I often see myself climatize to my patient in hand, becoming a chameleon in their environment.

However, why are young adults not receiving adequate palliative care when they need it? This has been flagged up throughout my short time in palliative nursing and often through debriefs of these patients there is a never a clear outcome. 

This blog is not to fix the issue, it’s just to create a discussion about why is it so difficult to give palliative care to a young adult? I know the most glaringly obvious answer is because they are young. Maybe palliative care wont ever be well received to young adults because it is too painful to have to come to that realization. The fight and hope, episodes of denial in patients and their families are  often the coping mechanism holding it together and sometimes by accepting palliative means losing this. Are we contradicting out job by forcing them to accept us?

Looking after young adults that have been diagnosed with a terminal illness, it often was chaotic when crisis hit, every young patient was different but often I saw it had to hit crisis point before acceptance of pain medication or any intervention that meant being kept ‘comfortable’ was accepted. 

Looking after a young man who had just turned 20 was a real privilege and he taught me many ways in which he wanted to be cared for that differed from anything I had ever thought before or that followed ‘linear palliative’ nursing. 

His main concerns weren’t about his pain, or his overwhelming tumors on his body, or sleepless nights, it was simpler than that and we as nurses and every health care professional that walked into his room had ignored it. 

He opened up and explained  he was sick of the ‘sympathy’, the sad looks and patronizing tone of voice he got from anyone that he encountered. He had enough about discussing his pain and giving scales between 1-10 of how effective medicines were. He was unable to see his friends due to lockdown and was desperate for some ‘normality’. 

We had a conversation about the things that were important to him. He wanted to laugh, and he wanted to talk about Love Island, he became very tearful talking about this because hefelt like he was screaming from the inside, but no one can hear him because all we, the health professionals, choose to see is the problems we, think he must be suffering with. 

The young patient had 4 weeks of being at home doing what he wanted to do whilst he could. This meant being with his dog, playing his x-box and feeling safe. He would often laugh at the thought of ever ‘dying in a hospice’ and being ‘bored stiff’ with the serene atmosphere and calming music. He was in pain on most of my visits and often I felt as if I wasn’treally doing my job as it was a conversation about normality, reality TV or my poor knowledge of football he wanted rather than the pain relief, or symptom control advice I was used to giving.

However, it took me a while to realize that was his symptom control. For the 4 weeks he slept on his sofa in his lounge, but this was his wish and as much as it may not have looked the picture-perfect shot of a hospital bed and a pain free patient it is what he wanted. 

I think it’s difficult to ever feel like you have done a ‘good job’ in palliative care because it seems strange to ever feel satisfaction or achievement from a death. However, I will take away from this particular patient how much he enjoyed feeling ‘normal’ and that despite all the fancy medications and symptom control measures we have to offer sometimes the simplest gestures as company and a conversation are more effective.