People deserve to have their end-of-life care wishes met
With the number of dying each year expected to increase, the government needs to make the right to a good death a priority
The Guardian, Wednesday 18 January 2012
Providing home-based end-of-life care should be a positive experience. Photograph: Paul Box/reportdigital.co.uk
Every minute in the UK someone dies. That’s over half a million people a year, but many of us are still not receiving good end-of-life care or having our dying wishes met. This can cause unnecessary pain and suffering.
Despite recent progress, the gap between what people want when they are dying and what they get remains huge. Although around 70% of us would like to die at home, more than half continue to die in hospital, often after unnecessary and expensive trips to accident and emergency departments and crisis admission. According to the National Audit Office, four in 10 end‑of-life patients had no medical need to be in hospital. This is especially concerning as a poll for Dying Matters last year found that 59% of people are scared of dying in hospital.
It doesn’t have to be like this. Across the country there are examples of excellent practice that show the positive impact of viewing end of life as more than a health issue. The example of Home Group supporting people to stay at home builds on other good work in the north-east through its “good death charter”.
The good news is that, by listening to what people want, investing in community services and making end-of-life care everyone’s business, we can improve things. The Dying Matters coalition, which has 16,000 members, can help. It was set up to help people to make plans for their end of life. With people living longer, but the number dying each year expected to increase, we need to make this a government priority. And to make this happen we need a new deal for dying people.
First, we need to shift investment towards community-based services, including day and night end-of-life support, and to ensure that both care homes and housing providers are able to help people stay at home at the end of their lives. Second, more needs to be done to support staff working across health, social care and housing to improve their confidence in having sensitive conversations about people’s end-of-life wishes. Importantly, this needs to be accompanied by zero tolerance of unacceptable care. Third, there needs to be leadership on end-of-life care so that it becomes a priority.
Finally, we need to see a good death as a normal part of a good life – and as a right. This is not a dress rehearsal: we only have one chance to get this right for ourselves and our loved ones, which is why it is so important to improve care and to innovate, especially in community settings where most of us would like to be cared for and to die. We will all die: the challenge is to ensure we can all be sure of a good death, wherever we live.
(Eve Richardson is chief executive of the National Council for Palliative Care and the Dying Matters coalition)