One-page profiles in end of life support

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.

Stephen's one-page profile

Stephen’s one-page profile

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.

Advertisements

The cancer wasn’t going to control me

Madge's one-page profile

Madge’s one-page profile

How one-page profiles can help people living with cancer to communicate with family, friends and professionals how best to support them.

Written by Gill Bailey 

Madge, 67, lives on the Fylde Coast. She is full of fun, a great story teller and very sociable. She has three children and four grandchildren. Her family are her life and Madge gets a great deal of pleasure from her grandchildren who range from six to eleven years old. Madge’s daughter Sally and her son Ian live nearby with their partners. Her other son Sam lives in Australia and Madge talks to him on Skype every weekend.

One year ago Madge’s world changed irreversibly. She was diagnosed with cancer of the oesophagus. Two months after receiving her diagnoses Madge underwent major surgery. On a bad day, Madge struggles to get out of bed. She often has to use a wheelchair to get about. She struggles to eat and enjoy her food and finds it difficult to sleep. Madge’s illness has taken its toll on her physically. She has lost three stone in recent months and her mobility is suffering more and more. But it is the mental and emotional impact that her diagnosis has had on Madge and her family which she finds most upsetting. Madge is a strong, intelligent, independent woman and watching the people she loves worry after her, seeing the concern in their eyes as they watch her eat or fretfully ask after her wellbeing has been incredibly hard. Madge needed to find a way of managing her condition, her emotions and those of the people close to her. The cancer wouldn’t go away but Madge wasn’t going to let it take control of her life.

We introduced person-centred thinking tools and specifically a one-page profile to Madge so that she could explore and communicate what was important to her and how best people could support her. As well as helping Madge to talk openly about her hopes and fears, she was able to specifically address some of the things that she found most frustrating about her condition and in turn how people could help her to manage this.

Madge developed a one-page profile and shared it with family and friends but also with medical and support staff who needed to understand Madge better in order to care for her in the way that she wished. In her one-page profile, Madge highlighted the importance of her family, the set time that she spends with them and the regular skype chats that she has with Sam each week. She noted her weekly luncheon club and card games with her friends. She described how important it was that people continued to share their good news with her because it helped keep her spirits up and how staying out of hospital was something she strived for daily.

Once she had stated the important things in her life, Madge was able to clearly say how people could support her to stay happy and healthy. This included helping her with the technical side of the skype sessions. Knowing that she was embarrassed by the wheelchair she sometimes had to use. Not making a fuss or cheering her on for clearing her plate when eating. Understanding that hospital appointments made her anxious and so organising the logistical side of it first and then letting her know who would be coming with her and when helped..

The one-page profile, together with other person-centred thinking tools, has been used to review Madge’s care and plan her support. It has helped the people closest to her to focus on the positive things they can do to support her, something which is incredibly difficult when dealing with the sadness of cancer and the changes that it brings. Madge’s family and friends remain the most important parts of her life and she is choosing to spend her time with the people she loves. She won’t stop laughing and she won’t let the cancer stop her living her life the way she wants to live it.

To create your own one-page profile and use other person-centred thinking tools to help with your cancer or long term health condition journey you can visit the think about your life website.

Seeing through the fog of grief

A moving and powerful story about how a one-page profile helped one woman find her voice when grieving the passing of her much loved husband. 

Written by Julie Malette

Monique's grieving one-page profile

Monique’s grieving one-page profile

Monique was 64 when her husband of 44 years Gaëtan passed away from an extremely aggressive cancer.  She and Gaëtan were in the process of selling their home and moving into an apartment when he was diagnosed and then passed away. 

Monique was a retired school administrative assistant and Gaëtan was a retired teacher.  They were selling the house in order to have more money to travel and enjoy life.  They had lifelong friendships with other couples they either met in high school or met early in their careers.

When Gaëtan passed away, Monique felt not only lonely from the loss of her husband but also hurt by the absence and lack of support from some family members and more importantly from the lack of support from some of their friends.  She understood that they were also grieving and that it must be awkward for them as couples to visit or invite her for visits but the loneliness and hurt was unbearable.

Monique’s daughter received a one-page profile example from a Person-Centred Practices colleague who had lost her husband.  She shared this example of profile developed to help family and friends understand what is important to the person in the grieving process and how to best support them.  That night, Monique went home and developed her own one-page profile and the next day her daughter typed it up for her and added a picture.

Writing the profile helped Monique sort out the different feelings she was experiencing and better understand what was important to her during this difficult time and what support she truly needed and wanted while she was grieving the loss of her husband.  Monique said that putting pen to paper was what helped her see through the fog of grief and understand herself and the situation better.

Monique chose to share the profile with her sisters (not her brothers) as well as a few close friends.  She was surprised at some of the reactions.  Many thanked her for sharing the profile because it helped them understand how to better support her.  A few others didn’t seem quite sure what to do with the information.  One friend in particular didn’t say anything after reading it and Monique was saddened by it and the disappointment made her contemplate letting go of the relationship.  A short while after this experience, this friend started visiting Monique and invited her for a meal.  Sharing the one-page profile with this friend actually saved the relationship.

Many people are hesitant about sharing stories and talking about the person who is deceased.  Monique needed and desperately wanted to talk about Gaëtan.  Writing a one-page profile helped her talk to family and friends about this need, even if she didn’t always share the profile with them.  The profile helped her find her voice.