The importance of how and where we die and why it matters

By Simon Jones
Head of Policy and Public Affairs, Wales


Simon Jones, Head of Policy



Too many people in Wales are dying in hospital when their wish, overwhelmingly, is to die at home or in a hospice.  Recent figures compiled by Marie Curie Cancer Care from The Office of National Statistics and NHS Wales show that more people in Wales are dying in hospital than any other part of the UK and that they are, on average, spending longer in hospital before their death.


In a week that sees the end of the consultation period on the Welsh Government’s delivery plan for end of life care, I want to talk about the importance of how and where we die and why it matters to us and the family and friends we leave behind.

The big picture


Marie Curie recently launched an online End of Life Care Atlas which presents statistics relating to how and where we die. It shows an average of 61 percent of people in Wales dying in a hospital and only 20.5 per cent dying at home.

The numbers of people dying at home in Wales compares well to those dying at home across the UK where the average is 20.3 per cent.  The pattern compares less well for those dying in a hospital where the UK average is 55 per cent.  In Northern Ireland 51 per cent of people die in a hospital.

The picture within Wales displays significant regional variations, ranging from 56 per cent in the Hywel Dda area dying in a hospital to 69 per cent in Cwm Taf - the highest figure in the UK.

How long people stay in hospital in Wales in the period up to their death also merits careful attention.  Across the UK, on average, 24 per cent of people spent eight days or more in hospital before death.

In the Powys Health Board area the figure is as low as 19 per cent though, of course, there are no acute hospitals across the county. Across the rest of Wales the lowest percentage of people who have spent eight days or more in hospital prior to death is in the Betsi Cadwaladr area at 29 per cent and the highest is in the Aneurin Bevan area where the figure reaches 39 per cent.

These figures are in stark contrast to patient preference. In a 2008 YouGov poll which asked people in Wales where they would wish to be cared for if they had a terminal illness, 67 per cent said at home. 16 per cent chose a hospice or nursing home and only 6 per cent thought they would prefer to die in hospital.  People made their choice based on where they would feel happiest and on their ability to be close to family and friends.

At a time when the NHS in Wales is focusing on listening to people’s views and is guided by the Welsh government’s policy of getting services, where appropriate and safe, as close to people’s homes as possible this is surely an area where much could be achieved.

There are many organisations involved in end of life care that would play a part in making this change happen; NHS Wales, local authorities and a wide range of third sector organisations.

Evidence


Download the executive summary


Recent independent research, commissioned by Marie Curie and undertaken by the Nuffield Trust, looked at the experiences of over 29,000 people in England who received care from the Marie Curie Nursing Service. Their outcomes were compared to a ‘control’ group of people with similar characteristics who did not receive care from Marie Curie, but who may have received other nursing care.

It found that more than three quarters (77 per cent) of those receiving Marie Curie care died at home, compared to 35 per cent of the ‘control’ group. Only 12 per cent had an emergency admission at the end of life, compared to 35 per cent of the ‘control’ group, while as little as eight per cent had an A&E attendance, compared to 29 per cent of controls.

In Wales we recently looked at the outcomes in the Betsi Cadwaldr area where we provide a community nursing service and a rapid response service linked to the GP Out of Hours service.  In the six months between April and September 2012 we found that a very similar percentage of people receiving Marie Curie care died in their own homes.

Read more about the Nuffield Trust report

Though the Nuffield Trust work and our analysis of outcomes in north Wales are not directly comparable they both have a very clear and common message – it is possible, through co-ordinated support, to enable people to remain in their own homes in the weeks and days before they die.

Making improvements


We have been and remain very supportive and appreciative of the role the government has played in driving improvement in palliative care – from the publication of the Sugar Report to deliver 24/7 nursing in the community, through to the establishment of The Palliative Care Implementation Group, led by Baroness Finlay of Llandaff, Professor of Palliative Medicine.

The Group has led the delivery of a 24/7 consultant-led community nursing service across Wales.  All providers of palliative care services now work very closely together and the requirements placed on Local Health Boards in Wales in the draft end of life care delivery plan will take things to a next stage and allow much better scrutiny of service performance.

There are still areas where we feel the draft plan can be improved. For example requiring the ambulance service to have a plan in the way it supports end of life care, and further developing the way in which we get feedback from patients and their relatives to help inform service improvement.  We also think that place of death should be a key outcome indicator.

Talking about death is never easy.  It is even less easy talking about your own death.  Doing so, however, is the only way we will reach a position where people are able to die where they wish which, overwhelmingly, is at home.  The Welsh Government has clearly set its stall out over recent years and through the development of an end of life care delivery plan that it is prepared to talk about how and where we die.  We will continue to support this approach and to talk about what could be done to ensure the best possible quality of end of life care.

You can access the Atlas at www.mariecurie.org.uk/atlas and the Nuffield Trust report at www.mariecurie.org.uk/impact

This post first appeared as an article in the Western Mail on Monday December 3.