This week is the National Council for Palliative Care (NCPC), Dying Matters Coalition, Dying Matters Awareness Week (DMAW), with the theme, ‘Talk Plan Live’. The aim being to highlight the importance of talking about dying and, importantly, of planning ahead. In October 2014, we published the Centre’s report on Transforming care at the end-of-life, so this seems like an appropriate time to consider developments since then and why raising the profile of dying really does matter.
Our report on end-of-life care acknowledged that supporting people to live well until they die is very challenging. It noted that while the focus is often on where and when people die, there is less understanding of how people die. It acknowledged the measurable improvements there have been in supporting people to die in the place of their choice and that individuals who are able to access a hospice or specialist community and hospital palliative care services, generally receive high standards of care. However, it also found that there are still too many inequalities in access to good quality care and support and limited information on whether the considerable resources spent on end-of-life care (which we estimated were at least £4.5 billion a year) are used effectively.
The Deloitte report synthesised the findings of a number of important national reviews, which identified shortcomings as well as significant variations in quality of care; and highlighted some of the solutions at the national level and, more specifically, local examples of evidence based practice that were helping to transform care. Since publication, there have been a number of positive improvements, many of which are highlighted as part of Dying Awareness week. But there have also been a number of further publications showing there is still much to do. These include:
- The February 2015 report by the consumer organisation Which? 'Dying Better', which is explores the financial, legal, and administrative challenges that consumers experience at each stage in the dying process. In outlining the structural, societal and subjective barriers that individuals and carers face, it identifies steps that companies, government bodies and professionals could take to improve people's experience. It calculated that consumers face a range of often unforeseen costs at the end-of-life, including travel to and from hospital, increased heating bills and the price of special foods and clothing; and that following bereavement, people face the escalating cost of funerals (a seven per cent per annum increase since 2004) with costs likely to rise to £11,200 by 2020, up from £8,400 in 2012. It also noted that people currently lack information and knowledge on choices.i
- In March 2015, the House of Commons Health Select Committee published the report on its End-of-Life Care Inquiry identifying significant variation in quality and practice, across both acute and community settings. It’s recommendations include a call for free social care at the end of life so that no one dies in hospital for want of a social care package of support, bereavement support for families and equal access to round-the-clock specialist palliative care for people with non-cancer diagnosis, older people and those with dementia.ii
- In March 2015, a new survey by Marie Curie revealed the top concerns people would have if they were faced with caring for a loved one with a terminal illness. Fifty per cent of UK adults say that their loved one’s pain not being managed would be a top concern, followed closely by not having access to 24/7 care and support (44 per cent). The results also show that over 20 per cent say they would be concerned about the strains caring for a loved one would have on their finances and 24 per cent would be concerned about the ability to take time off work to care for a loved one. Older UK adults are more likely than their younger counterparts to say that if they had a loved one with a terminal illness, they would be concerned about not having access to 24/7 care and support.iii
- on 18 May, the NCPC Dying Matters Coalition survey of over 2,000 adults, commissioned to support DMAW, found that while many patients regularly thought about death and believed it should be talked about more often, most admitted they found it uncomfortable to discuss. Less than a third of people had written a Will, registered as an organ donor, taken out life insurance or talked to someone about their funeral wishes. Just 18 per cent had asked a family member about their end of life wishes. The most important factor in a “good death” was seen as being pain free (33 per cent), followed by being with family and friends and retaining dignity. Furthermore, 75 per cent of people agree that providing end of life care should be a fundamental part of the work of the NHS, with almost two-thirds agreeing that end of life care should be a priority for the new Government.iv
The Dying Matters Coalition, is working to address the above issues. Indeed, the NCPC has published a new guide ‘What to expect when someone important to you is dying' which aims to demystify the dying process so that people better understand the changes that can happen in the last days of life.v
The five things to enable people to live well and die well are:vi
- Make a Will and consider if you need to make financial plans
- Record your funeral wishes
- Plan for your future care and support
- Register as an organ donor
- Tell your loved ones your wishes.
Every adult, whatever their age, has a part to play in encouraging their loved ones to ‘Talk, Plan, Live’ and indeed lead by example. Raising the profile of dying, which is one of life's certainties, will be a critical factor enabling people to live well and get the most out of life until the very end.