End-of-life care is one of the nine key components of care for older people outlined in the report I wrote with colleagues in 2014. I also spend much of my working life supporting patients close to death and their families, so I’m delighted we’re giving this issue prominence.
Around half a million people die each year in England and Wales. We’re all going to die eventually. Some will die suddenly, unexpectedly, with little chance to plan or even be aware of what’s happening. Others may be diagnosed with a rapidly terminal condition such as late-presenting, advanced cancer. Even in this scenario, most will have at least a few weeks to plan for the end and to ensure a relatively ‘good’ death. However, with a rapid rise in the number of people in the UK aged over 65 and an even larger rise anticipated in those aged over 80, most of us will die with frailty or long-term medical conditions and will start to rely more heavily on health and social care services, making the need for a conversation about personal preferences regarding end-of-life care even more pressing.
The Mental Capacity Act has helped start some conversations about advance-decisions and welfare attorneys, and developments such as the Leadership Alliance for the Care of Dying People’s One chance to get it right report and the Gold Standards Framework have helped staff in the NHS and care home sector to develop plans with more people. But this is not the norm.
So what does happen when people die in England in the 21st century? Despite too many poor experiences and media coverage that tends to focus on scandal over solutions and success, there is plenty of good. A recent Economist Intelligence Unit report rated the UK the best place to die out of 80 countries. And the latest National Survey of Bereaved People reported responses from more than 21,000 people – 75 per cent of whom rated their loved one’s care as ‘outstanding’, ‘excellent’ or ‘good’. This is something we should celebrate, though we still can’t be complacent about the 10 per cent of experiences rated ‘poor’.
Hospice care was considered to offer the best support, security and control of symptoms, while home offered perhaps the most dignity and control – but often additional worries too. Nearly half of us still die in hospital – even though over two-thirds of people say they would prefer to die at home given the choice. And far too many care home residents are admitted to hospital to die. However, we should not crudely reduce discussion of quality in palliative care to where people die. Some people will die in hospital and some will actively choose this when death is near, even when offered alternatives. And we can’t assume that end-of-life care in hospital is inevitably done badly. Place of death certainly matters, but it is not the only factor when it comes to discussing quality in palliative care.
To improve palliative care and support both in hospital and elsewhere, we ideally need a bigger specialist palliative care workforce. According to the Royal College of Physicians consultant census there are only 519 consultants in the four UK nations. And the National Council for Palliative Care workforce report showed we have fewer than 5,000 specialist nurses. We also need more hospice places than we currently have. And it is essential to address the crises in social care provision and the primary care workforce.
There will never be enough specialist palliative care provision to help everyone, all the time. And even with specialist care available, many other general professions, services and charities such as Macmillan, Marie Curie and Dementia UK (via Admiral Nurses) play their part in helping people to die well. Good end-of-life care skills need to be everyone’s business. A binary scenario in which people either see a specialist palliative care team or have a bad death can no longer be tolerated.
We’ll touch on all these subjects and many more during our conference in September. Most importantly, several sessions and speakers will focus on how things can be improved and are being improved right now within our services. Sometimes ‘innovation’ is as much about replicating the things that we already know work, but making them the norm rather than rare exceptions.
- Find out more about our upcoming event, Innovative approaches to end-of-life care