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Making a Difference Every Day

ED

Permission given by his sister to show his families’ favourite photograph

 

At Oxfield Court in Huddersfield we ensure we support all our clients with a high standard of person centered and end of life care(EOL).

A team of dedicated individuals from different areas and different roles within St Anne’s have developed a care pathway ‘Doing it my way’, which was originally inspired by achieving and implementing the Gold Standards Framework (GSF) at Oxfield Court. My Way has grown from our experience of embedding the principles of EOL from the GSF. Our care staff have received training and are competent and confident in supporting our clients to lead healthy lifestyles and supporting them and their families at the end of their lives. We understood that to provide excellent end of life care the whole team must be on board and working together and feel confident to support the client and their family no matter what the challenges might be. We understood that waiting for someone to become ill and then acting was too late as no one makes good decisions in a crisis with little time to think and plan.

These principles are embedded within every individual care plans as dying is an important part of the living process. Being able to unite with the client, their families and other specialist services, to develop a trusting supportive network at an early stage is imperative, especially as our clients are often born with a life limiting conditions. Our ethos is to introduce our care pathway principles shortly after admission, ensuring the smooth transition from the client’s heath being at the optimum level and as the person’s health starts to deteriorate to their end of life.

ED came to live at 8, Oxfield Court a nursing home for individuals with a learning disability in 2014. His family were so dedicated to their brother and emotional, as he had down’s syndrome and dementia, which was affecting his independence and well-being.

We had an initial settling in period, where we built up a trusting relationship and then had open and honest discussions about their brother regarding his health and how his downs syndrome and dementia would start having an impact on him.

These discussions were fundamental in laying a strong and trusting foundation for the process of the end of life care we would eventually provide and the difficult decisions we faced. We worked collaboratively together in all the decisions made, as E was assessed as not having capacity now to understand what support he needed and conversations about his best interest were made together for the next two years. We continued to share information in some instances when the kettle was boiling for a cup to tea. We would talk about his future and the changes we might witness and how we would support him in the way he wanted to be cared for. We talked about their preferences and completed his advance care plan.

During the next two years, we promoted E’s independence and his spiritual needs. Activities that gave meaning to his life were being around his family and familiar carers due to his anxiety and he enjoyed his trips out for a large slice of cheese cake and a latte. He found the canal boat trips relaxing and laying on the sofa was his comfort zone and something he had enjoyed at home when he lived with his mum. He welcomed visitors with his friendly comments and his mannerisms created happy encounters.

As his health deteriorated. We talked about the importance of putting a DNACPR in place and the benefits of having anticipatory medication prescribed. His sisters found this a difficult topic to take on board, but we worked through their concerns and I made sure that they understood this would be in E’s best interest.

His family were supported through all changes they were seeing with their brother. The care staff were there to reassure and explain why we were supporting him in the way we did. He had stopped talking and was sleeping a lot of the time. They were still involved in all the aspects of his life and care. He would have periods of being anxious and his carers would stay by his side and reassure him. He had regular aroma massage sessions, which he liked and it helped him to stay relaxed and calm.

Even after all reasonable adjustments had been made to maintain his independence, E started to struggle to take adequate amounts of nutrition and hydration and was losing weight. We approached the Admiral nurse at Kirkwood Hospice who came to support us to ensure we had the care he required in place. We had frank discussions over his end of life care. She was impressed with his end of life file and the information in it, especially his life story book, which we explained was acting as a memory tool. E would on his good days responded to the photographs of his life as a young boy and man with his family. It helped his family to reflect on their life together and it broke the silences that occurred as everyone was deep in their own thoughts. His family contacted Father Emmanuel who befriended him and got to know him. He shared his faith, they prayed together and eventually he performed the sacrament of sick with E and his family.

As we reached the time when together we needed to make the ethical decision about whether it was in E’s best interest to be supported to receive his nutrition and hydration via an enteral feed, his family and professionals united to become one and talked openly about how we could support him at the end stages of his life. An emotionally lead decision was made by his family supported by his care practitioners, to not have a PEG fitted and we reassured his family of how we would ensure their concerns would be addressed as he was experiencing end stage dysphasia and dementia. All records were completed on a best interests document that was read by all who attended the meeting as a true record of what had been discussed and the decisions that had been made.

A week later E’s health deteriorated quite suddenly, but we had put the necessary protocol in place to ensure everything in our service ran smoothly. The Admiral nurse popped in on a regular basis and she gave the family a booklet explaining what to expect as E entered the final stages of his life. His sisters spent the next week holding his hand, reminiscing over their fond memories being supported by my team ensuring they plenty to eat and drink and comforted them when they needed it. E died peacefully on the 26th May 2017 in the place of his choice, surrounded by his family and carers.

On the 15 June 2017, we united for Requiem Mass for E. Father Emmanuel facilitated his service.

This will not be the last time we meet. The close bonds we developed over the time E was in our care has enable his family and carers to grieve. His family have asked if they can continue to visit us when they are passing and we have made plans to unite again on the date of E death to celebrate his life.

7TH October 1958 ~ 26th May 2017