Advance care planning – for everyone
Digital services that facilitate difficult conversations
After we completed a project to design the ReSPECT process, we delved further into the facts, figures and stories surrounding end of life care. We learned that too many people die in hospital, with no medical reason to be there. We were excited by research showing advance care plans are effective in giving patients control during serious illness and death, and that people with a plan are more likely to die in their preferred place of care. We also believed that by combining our design and technical skills with insights from patients and their families, we could do something about the low take up of advance care plans.
As the population ages, and medical knowledge advances, the importance of giving people more choice and control over their care has never been greater. Around 500,000 people die each year in the UK, and half of these deaths occur in hospital. Yet only 8% of people want to be there.
Research shows that an advance care plan is an effective way to give people choice and control - 80% of people with a plan die in their preferred place of care. Having an advance care plan is highly effective in aligning healthcare with patients’ wishes. They reduce hospital bed days in over-65s and save money for the NHS. When an advance care plan is in place, patients and their families report happier experiences, particularly at the end of life.
An advance care plan is simply a written guide spelling out your likes, dislikes, wishes, and the treatments you want to refuse or the rituals you want followed - whether during illness or at the end of life. The planning process helps you and your carers think about different scenarios, and the plans are used by medical staff if you become too ill to communicate.
However, despite the numerous benefits only 5% of people admitted to hospital have an advance care plan. It’s like a will - we all should have one, but few of us bother until it is too late.
We wanted to change this, and from the outset we knew we didn’t just want to increase the number of plans being made in GP surgeries and hospitals. Clinicians are already very short on time. We wanted to take advance care planing mainstream – out of the clinics and hospitals, and into the home. To do this, we spun out a social enterprise with the sole purpose of developing digital tools that help individuals and families take an active role in planning and managing the care they receive.
Amber Plans on a tablet computer
The plan can then be shared with family, carers and GPs. The service, which covers England and Wales, received initial funding from SBRI Healthcare.
Our designs and prototypes were tested by volunteers from Marie Curie, and had invaluable input from Parkinson’s support groups and dementia memory clinics. We visited retirement communities and talked to GPs and palliative care consultants. We roped in family, friends, colleagues and strangers to make sure the service is straightforward to use for all walks of life. Now it has launched and is being used by people of all ages every day; our youngest user is 23, and our oldest is 85!
Digital Care Planning’s first product – Amber Care Plans - is designed to make the advance care planning process as easy as possible, so anyone can do it from the comfort of their own home.
The feedback we’ve received is encouraging. People tell us it’s easy to use, a great idea, and that they feel more in control after completing a plan. However, during our tests it has become apparent that some people benefit more from a conversational approach. We’re on a mission to make advance care planing easy for everyone, so we’ve developed a chatbot.
At the moment, Amber - our chatbot - walks you through the creation of your advance care plan. As more people use this service, Amber will learn to respond better to users. We’re also exploring how best to harness voice technology to make these difficult conversations easier and more social.