End-of-life care ... what do patients really want?
EU—funded researchers have discovered that terminally ill patients would rather give their quality of life a boost than extend the time they have left. The finding is an outcome of the PRISMA ('Reflecting the positive diversities of European priorities for research and measurement in end of life care') project that clinched EUR 1.65 million under the Health Theme of the EU's Seventh Framework Programme (FP7) to deliver an integrated programme to coordinate research priorities and practice.
Led by King's College London in the UK, the PRISMA partners conducted a telephone survey of more than 9 000 people in 7 European countries: this offered insight into how people suffering from serious illnesses (including cancer) want to live better rather than longer, as well as the various issues that impact the lives of caregivers.
The data show that of the people polled in Belgium, England, Germany and the Netherlands, 71% would choose to improve their quality of life compared to 4% who would rather extend their life; 25% believe that both quality and extending life are important. When asked what was the biggest problem for them, patients said 'being in pain' was the worst, followed by 'being a burden to others'.
The study's findings were discussed by policymakers, palliative care experts and research funders in Brussels, Belgium on 24 March at a symposium held by the PRISMA consortium. According to the project partners, more focus should be placed on quality of life together with potentially life—prolonging treatments; this is especially important given that a quarter of those polled want both.
Professor Irene Higginson of King's College London led a group of researchers and clinicians who favour reassessing delivery of end—of—life care in Europe and raising research investment to ensure people's needs are met soundly before they pass.
'There needs to be a fundamental shift in the approach to delivering end—of—life care across Europe,' says Professor Higginson, PRISMA's Scientific Director. 'Although individuals' priorities and needs will differ, it is absolutely clear that people value highly the quality of time they have left,' she adds.
'What we need to see is a step—change in the way policymakers 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.'
The PRISMA partners want to encourage healthcare professionals working with people with advanced diseases to change how they measure factors that are vital for patients and their families.
The majority of professionals depend on physical tests, including blood tests and scans, to diagnose and treat their patients. PRISMA believes that while such tests are central to a patient's well—being, they can potentially miss the effects of the illness on the person and their family. Evaluations based on symptoms, and social, psychological and spiritual needs should be included as well.
PRISMA partner Professor Stein Kaasa of the Norwegian University of Science and Technology says: '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.'
Other PRISMA partners included experts from Belgium, Germany, Italy, Norway, Portugal, Spain and Uganda.