Post-its from Practice:
A "good" but unnecessary death (Mar 2008)
Neno, a patient of six years, died last week. He died how and where he hoped he would, in his log-term partner's arms at home in his own bed. We had had our last consultation just four days before, when he walked to the surgery, although he was severely jaundiced and unwell. He said it might be his last walk, but he wanted to say thank you to the receptionists for their care and attention and he wanted to review his life with his doctor and discuss his last requests. He apologised that he wouldn't be able to cook that barbeque he had promised, unless I wanted to come in the next couple of days - it was hailing outside as he spoke!
I felt extremely privileged to be able to share this time with him and to have helped in the care of this amazing man. It reminded me again why I love being a GP.
If you had looked at his records you might have wondered if I was talking about the same person - he was allocated to us six years ago after being discharged from the specialist service for aggressive behaviour. He had paranoid schizophrenia, problematic drug and alcohol use and hepatitis C, as well as ruptured cruciate ligaments after a bike accident, so he needed a brace and crutches to walk.
He responded well to the "freedom" of the surgery and would pop in to chat to the receptionists. We always knew when he was heading for a psychotic episode because these visits became more frequent. He mainly took his medication, and avoided most psychiatric appointments, but developed a good relationship with his community psychiatric nurse. Neno's drug use settled well on 200mg of injectable methadone. He was dependent on alcohol and struggled constantly to keep his alcohol use under control.
After a successful detox we referred him, at his request, for treatment of his hepatitis C. He was genotype 3a and had active hepatitis. Sadly this was four years ago, before the recent NICE guidance, which recommends treatment for all who consent and the hospital declined him treatment because he was having injectable methadone treatment, rather than because of his psychiatric history or alcohol despite the fact that we confirmed that he never shared and was religious about using clean equipment.
When he was refused hepatitis C treatment he behaved badly at the appointment and got discharged back to our care. Shortly after that he had an alcohol relapse and would not discuss HCV treatment again. We monitored his liver function and alpha-fetoprotein (rises in liver disease and markedly in liver cancer) and continued to work with him on his alcohol use. Then, during a psychiatric admission about 18 months ago, he developed liver failure and a hepatoma (liver cancer about 5% of people with chronic hepatitis C develop) was diagnosed. It was untreatable and for those who are treated the results are poor for the majority ...Transplant was the only possibility and that was unlikely. He was given about three months to live but he defied the medics by living for 18 months.
No-one can say if Neno had been treated four years previously for his HCV whether he would still be alive but it is difficult not to speculate. Since his death I have thought about him a lot. He was an extraordinary man who I grew to love and I miss him. But I feel pleased to have known him and pleased that we were able to get past the labels to see the person that he was.