"My brother's end of life care"

My brother went to hospital for a check up but they kept him in. He was told within a few days that he had lung cancer. My brother was vulnerable, he was an anxious fellow and not used to being around a lot of people. He was placed in Ward 3.

I did talk with a nurse to ask them to look out for him and explained he has issues with social anxiety. Before I could finish what I was saying they told me that he would not be considered for a side room as they were kept for vulnerable, frail patients. 

I did convey to staff that I was keen to talk to a doctor about my brother's prognosis. Each day I visited I had a list of questions with me. I am aware of the pressures on the nhs and was not my usual tenacious self in seeking answers imminently. I told myself not to be a burden and to wait. I also checked they had my details as next of kin and the  nurse I spoke to read out my mobile number to me.

After one week my brother caught covid and his health deteriorated. They could do no more for him. They tried to phone me on my mobile during the night but I missed the call. He was moved to the HDU for a short spell and  then moved back to Ward 3. I spent the last 36 hours by his side. 

Those last 36 hours (I'm sorry to say) have to be the most traumatic thing I have ever witnessed and experienced, they have had a lasting and significant impact on me. I feel like I have PTSD as a result.

Why am I unhappy? My expectations were that he was in the right place, that professionals were equipped to deal with this. Now I'm not so sure. 

When he was in HDU he was in constant pain, he was given a driver for pain but his pain management was never under control. His end of life experience was painful, traumatic, hampered and distressing for all involved (staff and family and least of all my brother). His passing was not peaceful in any way. It did not improve any when he was moved back to ward 3. I got the sense that staff were not experienced, prepared or equipped to deal with his end of life care. Even when I saw him slipping away and becoming agitated I asked nursing staff for advice, a prognosis, some insight into what was going on. This was not forthcoming. 

I feel that my brother died a death without dignity due to his end of life care/ pain management being ineffective. I am a strong person but six months on, this experience can only be described as not only traumatic but horrific, disturbing and painful beyond words. 

I am not sure what can be done but I wanted to share my experience to save other people from this pain.

My brother went in for a check up and died 2 weeks later. He died of Covid, this is on his death certificate. Having a side room may have saved him from covid but it was not considered at the time I asked. 

When the nurse read out my mobile number I was not thinking as I normally would as I would usually also provide my landline number. Maybe it can be suggested for staff to ask if relatives have a landline. Had this been the case, the hospital would have been able to contact me and I would have been able to talk to my brother before he deteriorated to the extent he could barely talk due to shortness of breath.

Early on his admission I saw a doctor doing the rounds and they knew I had questions but may have been waiting on results coming back from his scope. My future hope would be that they don't wait, they start the conversations earlier. I feel this would have made a difference as it would have resulted in a conversation with my brother where I was made aware of his wishes.I feel I can confidently say this as I know myself and know how I work.

I am really not trying to lay blame, I want to improve things and I am just exploring all angles. 

As for end of life care and pain management, what feedback can be provided ? I know that if my brother had been an animal and the public witnessed his pain then there would have been an outcry. I'm sure of that. 

Anyone in the medical profession will be able to suggest how to improve matters on this topic. I wanted a pain free, comfortable passing for my brother so he could die with dignity and I am sorry I was not able to do this for him. Had I been more knowledgable on pain and treatment, and been more assertive with staff to advocate for him, it may have made a difference. 

I practice gratefulness, on a daily basis but I have been unable to return to the hospital, or write to them to give thanks. This concerns me on a daily basis that's why I am writing this piece, hopefully some good can come of it.

Signed, Big sister