Justin Trewen Q&A: Improving end of life care for people with cancer

I qualified as a nurse around ten years ago, after looking after my Grandad at the end of his life. He didn’t have the best death in hospital, but there was an end of life care facilitator there who made everything easier for us as a family. She inspired me to train as a nurse and care for people at the end of life.

I worked on medical and rehabilitation wards in Berkshire, and then in Brighton, with a focus on end of life care and care for the elderly, which has always been a passion. I then joined the discharge team at Royal Sussex County Hospital, and loved being involved in complex discharge planning for patients.

My role is to try to improve care for people who are dying in hospital, and this can involve lots of different projects. For example, I’m excited about the ‘Taste for Pleasure’ project, which aims to dispel ‘nil by mouth’ culture and introduce some of the patient’s favourite tastes if appropriate when providing mouth care. We’re also looking into using volunteers in end of life care, who can spend time with people who are dying on the wards, and also offer respite for friends and families.

Research conducted prior to the fast track facilitator project found that, from the time someone was diagnosed as dying, it took about 13.8 days to discharge them from hospital to their preferred place of care. Of the sample of patients I looked at, 80% died on day eight in a hospital bed. I’m very proud that, as a result of our new pathway, people at hospital in Wakefield who are diagnosed as dying and want to be at home with carers can now get home within six to eight hours.

This was a really successful project and we were runners up at the Patient Experience Network National Awards last year. I also won the Macmillan Quality Improvement Excellence Award in November. This national recognition helped secure continued funding for the role from the Trust, to embed this work further across our hospital and two others. But the real achievement is the fact that the project is working, and the impact for people at the end of life is immediate.

I think the public often have Macmillan in their hearts, so that affiliation helps us gain patients’ trust and make sure they feel safe. We have also used the training available from Macmillan, and received the grant funding to pay for some advanced communications skills courses.

I think the thing that really matters to people is communication. If you know what you are facing, you can face it. The main thing for me is offering hospice care within the hospital. I think having volunteers can help with that. For example, volunteers who can spend time doing things such as hair and nails or providing complementary therapies.

We are also embedding the Gold Standards Framework for end of life care into four wards. I would like to see that rolled out across the Trust. We know the NHS is under such huge pressure, but in an ideal world, I would like to see end of life care given greater recognition as a key priority.

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