A group of leading researchers and clinicians, led by Professor Irene Higginson OBE at King’s College London, will today call for delivery of end-of-life care across Europe to be reviewed, and investment in research increased, in order to meet people’s needs more effectively at the end of their lives.
The call comes as policy makers, research funders and experts in palliative and end-of-life care meet today in Brussels at a symposium held by PRISMA – a consortium of experts from nine European and African countries, led by King’s College London.
PRISMA, funded by the European Commission to coordinate end-of-life care research across nations, says greater attention must be paid to quality of life alongside potentially life-prolonging treatments, as its survey of public views shows quality of life is important to people, often more so than extending it.
Results of the first ever survey of over 9,000 people across seven European countries about their priorities for end of life care will be discussed at today’s symposium. The survey explored people’s priorities as if they were confronted with a serious disease, and had less than one year to live. The survey showed that: 71 percent of people said they would want to improve quality of life for the time they had left; four percent would like to extend life; and 25 percent said both quality and extending life was equally important.
Professor Irene Higginson OBE, scientific lead of PRISMA and Professor of Palliative Care and Policy at King’s College London, said: ‘There needs to be a fundamental shift in the approach to delivering end-of-life care across Europe. Although individuals’ priorities and needs will differ, it is absolutely clear that people value highly the quality of the time they have left.
‘What we need to see is a step-change in the way policy-makers and clinicians across Europe look at end-of-life care, and ensure that people’s priorities and needs inform planning and delivery of these services. Together with an increased investment in scientific research into end-of-life care, this will really make a difference to the quality of people’s lives as they face their last weeks and days.’
Professor Higginson continued: ‘Only 0.11 percent of cancer research funding in the UK goes towards palliative and end-of-life care research, so it is vital that more is invested in this area to ensure scientific evidence helps to inform best practice.’
People surveyed in England said their top priorities at the end of life would be: having pain and discomfort relieved (47%), keeping a positive attitude (25%) and making sure relatives and friends are not distressed (20%). Only eight percent said having practical matters resolved would be their top priority. The importance of these priorities varied across countries, although the top two were the same across all countries.
The PRISMA group is calling for a change in the way all health care professionals working with patients with advanced diseases measure things which are important to patients and their families. Currently, the focus is on physical tests such as x-rays, scans and monitoring bloods. But PRISMA warns that, although important, these routine tests may miss the effects of the illness on the person and their family. A move towards assessment of symptoms, psychological, social and spiritual needs is urgently required in order to ensure an adequate response to patient and family priorities.
PRISMA compared the survey results with the views of nearly 800 clinicians working in end-of-life care and recommended a five-pronged approach to tackle: symptom control; emotional well-being; family support; choice for where to be cared for; and information needs.
Professor Higginson commented: ‘Each person facing the end of their life and their family are entitled to individualised care that addresses these five areas. Problems need to be screened for and resolved quickly and effectively so people have the best possible quality of life and time with their family members.’
To help achieve this, PRISMA has launched new guidance on how to measure outcomes in end-of-life care, and developed a novel system to help improve measurement within clinical care called the POS-S hand-held symptom card and booklet. These tools feature the Palliative care Outcome Scale which PRISMA found is one of the most frequently used measures in palliative care within Europe.
Professor Stein Kaasa, a member of PRISMA, Professor of Palliative Medicine and an oncologist at the Norwegian University of Science and Technology said: ‘It is now the responsibility of all clinicians working with patients with life-threatening diseases such as advanced cancer, to measure and lead others to measure the outcomes of their work against what matters to patients, so they know they are on the right track to providing quality care.’