Where you live in the country and whether or not you live alone, will have a disproportionate impact on your chances of receiving care at the end of your life, in the most appropriate setting. Older people, many of whom will have a number of complex medical conditions and people who live alone, are also less likely to achieve their wish to die at home.
Whilst Marie Curie welcomes findings in Public Health England's (PHE) What We Know Now Report published today - showing numbers dying at home (where most people want to be) has increased from 38 per cent in 2008 to 44 per cent in 2012 - there is still much to be done to improve the lives of those with a terminal illness, and their families.
As one of the report authors, Professor Julia Verne, Clinical Lead at PHEs National End of Life Care Intelligence Network stated: "... we cannot be complacent, the report highlights some aspects of patient experience which must improve, especially the care of the dying in hospital." The report also highlights the care of people with non-cancer conditions and the wide inequalities in end of care requiring more urgent prioritisation.
Marie Curie strongly believes that we need to pick up the pace of change if we want to be able to respond to the huge increase in the care needs of terminally ill people.
We're about to see the sharpest rise in the number of people dying, with annual deaths set to increase by 17% by 2030 to almost 590,000 deaths per year. Our rapidly ageing population and increasing numbers of people with multiple long-term, advanced conditions also requires more complex support towards the final stages of life. The majority of people die from non-cancer conditions such as heart failure, Chronic Obstructive Pulmonary Disease (COPD), dementia, frailty and multiple co-morbidities. Yet, these conditions are not always identified early enough and their course of decline can be erratic, unpredictable or protracted, often requiring complex health and social care support, which can be challenging.
A recent report from Marie Curie - Death and Dying: Understanding the Data - also painted a complex picture of end-of-life care, with big differences in access, experiences and outcomes for people who are terminally ill. It also showed that many people who die in hospital have no medical need to be there and do not want to be there. Our research also shows that 63% want to be cared for and die at home, yet only 44%, including those in care homes, do. This is because not enough or the right type of health and social care is available.
We want the Coalition Government to deliver on its 2010 Equity and Excellence Liberating the NHS White Paper in which they said the NHS would provide people with end of life care in the place on their choice by 2013/2014. In the Paper, the Government said they would '..... move towards a national choice offer to support people's preferences about how to have a good death, and we will work with providers, including hospices, to ensure that people have the support they need.'
'We expect choice of treatment and provider to become the reality for patients in the vast majority of NHS-funded services by no later than 2013/14.'
This is why Marie Curie is calling on the Government to urgently;
- Put in place increased capacity for health and social care so people can receive the right care in the right place when they are terminally ill
- Ensure everyone with a terminal illness has the option to have an 'Advanced Care Plan' in which they can outline their wishes and desires in terms of their end of life care
- Ensure everyone with a terminal diagnosis has timely access to free social care
- Ensure there is access to 24/7 palliative care for everyone who needs it
- Ensure there is good pain control and other symptom management at home
- Ensure quality advice and information is available for those needing care at the end of their lives
- Support for families and carers
Marie Curie works on its own and in partnership with a wide range of NHS, public and voluntary sector organisations to tackle many of the challenges highlighted in today's report. We want everyone, wherever they live to be able to have a 'good death', provided with the care they want and need, with support available for them and their families. As indicated in the report, Marie Curie enable more people to be cared for and die in the place of choice and through proactive and well-coordinated nursing care we can also reduce emergency hospital admissions and reduce levels of hospital care. We also know that when people have timely access to social care, they are less likely to suffer emergency admissions and die in hospital.
We hope today's PHE report will galvanise the Government to increase the pace of improvements in palliative and end of life care to ensure that everyone gets the right support at the right time and in the right place.