How person-centred thinking tools like one-page profiles can help people get the right support at the end of their life whilst helping family, friends and professionals through the journey.
Written by Tracy Meyerhoff
Sixty-two year old Stephen lived in Karelia Court, a home run by Hull City Council which specialises in supporting people with autism. Stephen’s autism affected his communication and interaction with people but despite this he was able to express his wishes clearly and choose his own support using person-centred thinking tools, something that Hull City Council has been introducing across their adult social services.
Staff at Karelia Court were committed to supporting Stephen in the way he wished, and so used a one-page profile to help record what was important to him and how best to support him. To assist the team in this staff received a training programme and introduced a series of support structures that helped change the culture of Karelia Court, putting person-centred thinking at the forefront of their support. This was reflected in the way staff and residents interacted with each other as well as in paperwork and care planning.
For Stephen, it meant that he was able to live life the way he chose whilst receiving the support he needed. This approach became all the more important when in 2011 Stephen was diagnosed with advanced oesophageal cancer. As a man with autism, routine and familiarity were very important to him, and his diagnosis meant that he was going to experience a number of changes and come into contact with lots more professionals involved in his care.
Following discussions between family, carers, clinicians, and Stephen, palliative care was felt to be the most appropriate treatment. For staff at Karelia Court, this meant ensuring that their values of providing person-centred care continued and that the new people that would become involved in Stephen’s support used his one-page profile to understand him and how best to support him.
Stephen remained at Karelia Court and received some in-patient care at Dove House Hospice. This reduced the chances of Stephen having to make unnecessary hospital admissions, which would have caused him additional distress. It also meant that staff were able to work together, Karelia Court sharing their knowledge of autism and Dove House Hospice, end of life care. Most importantly though, it meant that Stephen’s person-centred support continued and one of his dreams was realised when he met Hull City Football Club players after staff at the Hospice read that he was an avid supporter in his ‘If I could, I would’ statement; one of the person-centred thinking tools used at Karelia Court.
Sadly Stephen’s condition worsened and he passed away in January 2012 but the person-centred support he received from teams at Karelia Court and Dove House Hospice never faltered. The visits from friends and family that he had expressed as being so important to him meant that he passed peacefully with his loved ones by his side.
Since Stephen’s death, all the organisations involved have come together to reflect on what happened and to ensure that care for other supported people at the end of their life is always of a high quality. By keeping Stephen at the heart of all planning, sharing information and constantly talking to Stephen about what he wanted and needed, he was able to make decisions about his care right the way through, even planning where he wanted to be at the end of his life. It meant that his brother and sister were able to spend time with him without worrying about the practical elements of his care, that medical staff and support workers were confident that they were acting in his best interests, and that Stephen himself was comfortable throughout. Reflecting on the support Stephen received and how he was at the end of his life, his brother said; “If my death is half as good as Stephen’s was, then I would be happy.”
Talking about the benefits that person-centred care had on Stephen and how tools like one-page profiles could help others, Tracy Meyerhoff, Assistant Head of Adult Services (Hull City Council) said; “We realised through working with Stephen that it was the simple things that mattered to him, and for him good care meant providing seamless support and knowing him well.
“We have new ways of working, and we recognise person-centred thinking tools for the positive impact they can have. They help to ensure that the person is not lost in a chaotic and confusing time, and that they continue to influence decisions throughout their medical journey.”
There is an end of life personalisation checklist and guidance book available for free download as part of the Progress for Provider series.