Planning your care in advance
Thinking about the future and making plans for potential health and social care can be difficult.
Nobody is obliged to plan their care in advance, but by talking to those who provide care for you, you can communicate your wishes for any future care.
Talking to your nurses, doctors, care home manager, social worker, family or friends about your wishes is important should you become unable to make or communicate your decisions because of serious illness or disability.
East Leicestershire and Rutland CCG (ELR CCG) have developed a new guide to help patients consider what care and treatment they might like to receive if they should become seriously ill, disabled or unable to make decisions for themselves in the future. The guide also offers advice on how to have discussions with your care providers and explains how to record your decisions.
ELR CCG want to ensure that quality underpins everything we do and the Deciding Right programme has held events so GPs and other Leicestershire health professionals can share best practice on supporting patients at the end of their lives.
GPs, clinical coordinators, palliative care nurses, adult social care providers and representatives from secondary care in East Leicestershire and Rutland have had the opportunity to learn more about the Deciding Right programme, receive guidance on having conversations with patients and been provided with tools and resources to help them implement the programme.
Work is also ongoing to ensure health professionals across East Leicestershire are fully supported in their roles as end of life care providers. As the programme continues, more guidance will be issued on how to open discussions, record patient decisions, put care plans into action and how to share plans with other health and social care providers.
Working together for you
Health professionals and partners from across Leicestershire have come together on the Deciding Right programme to help provide patients with more choice about their care. Together they have tapped into a wealth of experience and expertise to make sure patients are able to make informed decisions about their future care and talk openly with their care providers about their wishes.
ELR CCG has worked in partnership on the Deciding Right programme with:
- Leicester City CCG
- West Leicestershire CCG
- University Hospitals of Leicester
- Leicestershire Partnership Trust
- Leicestershire County Council
- Leicester City Council
- Rutland County Council
- Patient and carer representatives
- East Midlands Ambulance Service
- Out of Hours Service
- Health Informatics Service
Sheila Westbury said having an advanced care plan helped her husband Donald to have a “good death” and took away stress for the family by ensuring he was able to make his wishes known not only to medical staff, but also to relatives.
The 74-year-old, who lives in Cossington, Leicestershire, lost her 80-year-old husband on 24 September 2012 after he suffered from end stage heart failure.
Mrs Westbury, who was married to Donald for 52 years, said the former bus driver was diagnosed with high blood pressure and heart problems in 2011, he began losing weight and it was the following year that the family was told that he would not get better.
“Donald caught shingles and never really recovered. We went to see our GP and he said we needed to do some planning. We were given the Deciding Right – Planning your care in advance leaflet to take away and discuss. It gave us information on how to sit down as a family and have some difficult conversations,” she said.
“We were able to discuss what Donald wanted for his care, how he didn’t want to go into hospital and what sort of funeral he wanted. The advanced care plan meant there were no questions left unanswered and everyone knew what had been decided.”
Grandmother-of-eight Mrs Westbury and her three children – Suzanne Harrison, aged 52, Stella Ward, 49, and Mark Westbury, aged 51 – all feel that Donald got to die with dignity.
Suzanne, who lives in Sileby, added: “Having the advanced care plan meant that most of the stress was taken away and I don’t really know what we would have done without it. It was still a very difficult time for everyone but it was reassuring to know that Dad didn’t need to be frightened to tell his GP what he wanted and he was able to communicate to everyone what sort of a death he wanted.”
The Homefield College residential support worker said alongside the advanced care plan she was also given a lot of support by her employer and colleagues which enabled the family to help care for Donald and to cope after his death. Her mother also continued to receive support from health and social care professionals.
She said: “It was also very important to Dad that he was not resuscitated, so when the end came and he collapsed at home we were able to tell the ambulance service this with confidence. In the end it was a good death, one that Dad wanted. He died with dignity and we’ve got good memories of the time we spent with him.”