One person dies every minute in the UK each year, most of whom have an advanced serious illness. With our ageing population, this number is set to rise along with increased need for palliative and end of life care by 2030.
Evidence tells us most people want to be cared for and die in their own home or in a care home, where possible. Most people who die in the community receive palliative and end-of-life care from a general practice, without involvement of hospice or specialist palliative care.
We can make a bigger impact on people’s experiences towards the end of their lives with high quality, consistent, planned care across GP practices and their networks.
The Daffodil Standards
The Daffodil Standards provide evidence-based guidance, tools and resources to test what you are doing well and spot where you can make improvements. They are important as GPs and their teams play a vital role in caring for terminally ill or dying patients.
I was talking to a friend the other day whose husband had died before Christmas, after a long battle with prostate cancer. She told me that her GP practice had been 'their rock', particularly towards the end, so I asked her what stood out for her.
She answered simply: 'they cared, and they listened to Alan and myself'. She went on to say that her most memorable contact with her GP practice was talking with the receptionist, Amy.
This is what the Daffodil Standards are all about. Facilitating a clear practice team approach, where all staff are encouraged to consider their own part in how they can improve care and support across each of the eight Daffodil Standards.
Whole team approach
It’s not about ticking boxes, but building the confidence of your staff and a compassionate culture; recognising when someone needs support earlier and sensitively involving patients and families in their care.
Most importantly, it provides an opportunity for patients and families to take the lead in understanding the support available to them, having open conversations and making decisions about their care.
Life is short, and better support in this area for patients means they can focus on enjoying the time they have left, rather than worrying about how to get the care and support they need.
Top tips for improving end-of-life care
The following tips explain how the Daffodil Standards can help your practice
- Make sure that patients feel able to discuss issues openly with someone in the surgery when they need help and advice - and that doesn’t always have to be with their GP.
- Small changes can make a big difference. For example, implement simple identification coding flags, identify carers or next of kin for all people on the palliative or supportive care register and send a bereavement card when a patient dies – families tell us this simple acknowledgement and possible signposting by their GP means a lot and helps them on their way through their grief.
- Not all changes have to be done by GPs. There are great teams of receptionists, nurses, health care assistants and pharmacists, to name a few, who are passionate about making a difference. So, ask who’d like to contribute and share the tasks between your practice, and the multidisciplinary team.
- Audit deaths at your practice, for example, look at the last twenty deaths to see how many of these had carers or ‘important other’ noted to see where records can be improved. One practice we worked with did this and realised that only 30% of people who died had been identified by the practice on their palliative care register (60% is gold standard) – and that only 40% had a carer or ‘important other’ noted (60-90% is a benchmark). Most of these were carers of cancer patients.
- Create a system to code the patient with an advanced serious illness on their palliative/ supportive care register and agree within the practice a place to record (e.g. on the ‘problem list’), so that all members of the team are clear if the person or carer calls in and requests support.
- Make sure each person on the palliative/supportive care register has been offered the opportunity to note important family members or carers on their record – including when and how they could be contacted. With consent of the person, try and involve these people in important decisions about care and support and document these discussions – these discussions can be crucial to enable achieving a person’s preferred priorities of care and death.
- Look at how to support carers during a person’s illness and after someone dies. This can include talking with some families of people who had died to find out their experience of care from the practice – i.e. what they think worked well at the practice and what could be improved.
The Daffodil Standards |
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The Daffodil Standards are a free, voluntary resource with attributable CPD points. Practices signing up receive a free welcome pack, which includes a ‘Daffodil Mark’ certificate to display, showing their commitment to improving end of life care. More information is available here. |
- Dr Catherine Millington-Sanders is RCGP/Marie Curie national end-of-life care champion
Dr Millington-Sanders and Dr Rachael Marchant, RCGP/Marie Curie clinical support fellow for end-of-life care, will be presenting the Daffodil Standards at the RCGP Annual Conference in Liverpool on Friday 25 October at 3pm in a session entitled 'A QI tool for end-of-life care in general practice’ - room 1C.
Delegates can also visit the Marie Curie stand and Great Big Daffodil installation at the RCGP Annual Conference, which takes place Thursday-Saturday this week, to find out more.