National survey shows little change in quality of care for terminally ill people

Scott Sinclair, Policy and Public Affairs Managerby Scott Sinclair Policy & Public Affairs Manager Making sure terminally ill people can live and die well is one of the biggest public health challenges facing society.  The National Survey of Bereaved People (VOICES, Views of Informal Carers – Evaluation of Services)   enables bereaved people in England to share their views on health and social care services experienced by a relative or friend in the last three months of their life. Despite being six years on from the Government’s End of Life Care Strategy, the most striking thing to emerge from this year’s survey, completed by 22,661 people, is how little has changed.

Disappointing results

Perhaps most disappointingly, the percentage of respondents who rated the overall quality of care experienced by people at the end of life as being outstanding or excellent has not changed significantly between 2011 (43%), 2012 (44%) and 2013 (43%). People also experience a significant variation in the quality of care they receive depending on where they die, what they die of and the deprivation level of the area they live in. Quality of care is rated highest for people who died from cancer (51% rating care as outstanding or excellent) and rated significantly lower for those who died in hospital than any other location (33% rating care as outstanding or excellent). These echo the findings of earlier surveys. People and organisations who design, commission and deliver health and social care services must take heed of these results and use them to drive improvements in all people’s experiences of end of life care, regardless of setting or diagnosis.

Pain relief

A Marie Curie report earlier this year highlighted that many terminally ill people are suffering unnecessarily because their pain is not being relieved, and the VOICES survey supports this finding . Relief of pain was reported as being provided ‘completely, all of the time’ most frequently for patients in hospices (62%) and least frequently for those at home (18%). Again, lamentably, there has been little change in patterns of pain relief in different settings between 2011 and 2013. There is a lack of round-the-clock help for terminally ill people and they need more support, especially overnight and at weekends. In May 2014 the National Care of the Dying Audit of Hospitals found that  only 22% of Trusts were offering 24/7 access to palliative care . 24/7 access to palliative care was also a key recommendation of the Neuberger review.

Individual needs

According to survey respondents, most people who stated where they would like to die expressed a preference to die at home (79%) but only 35% of people expressing that preference actually died there. Half of the people who wanted to die at home actually died in hospital. We need to give people a genuine choice, and control about where they are cared for and die. As this report by the Nuffield Trust on the Marie Curie Nursing Service shows, meeting people’s preferences is not unrealistic or unaffordable, yet many people die in hospital without any real clinical need. Services must be organised and coordinated around the needs and desires of individuals and their families. This is essential to improving the quality of end of life care yet this year’s VOICES survey shows that for those dying at home, the quality of coordination of care was rated significantly lower in 2013 compared to 2012. This must change.

Respect from nurses

One positive finding from this year’s survey is that the dignity and respect shown by hospital nurses (51% in 2013 from 48% in 2011) and hospice nurses has increased (86% in 2013 from 81% in 2011). Though this is encouraging, dignity and respect from other professionals has remained unchanged when comparing results from the last three years.  There is very little training for healthcare professionals in providing care and support for terminally ill people, yet most of them will work with someone with a terminal illness at some point in their career. There needs to be more mandatory, ongoing end of life care training for all health and social care professionals. In the three years the National Bereavement Survey (VOICES) has been running, it has highlighted both the poor and excellent care that people at the end of life receive. One of the blocks to achieving improved quality of care is the lack of feedback from patients and carers about the care received and VOICES has given us this data in abundance The challenge now for everyone involved in the care of terminally ill people and their families is to now take that data and make much needed changes to ensure that everyone gets the care that they need. With demographic changes coming that will see more people needing more complex care at the end of their lives, we simply cannot afford to let the drive to improve the quality of care available to terminally ill people drift.   NOTE FOR COMMISSIONERS: The newest release of VOICES data has been published at a national level. The Office for National Statistics recently combined the 2011 and 2012 waves of VOICES survey data and reconfigured the data so it is available at both Local Area Team and Clinical Commissioning Group level. To help commissioners determine what the VOICES CCG level data means for their areas, Marie Curie has created a mini-Atlas containing the new CCG level data.