Quality of Life in Old Age until the End - collaboration project with EUGMS and Maruzza Foundation
Developing an EAPC and EUGMS joint manifesto
A manifesto: "Palliative Care for Older People in the European Union" was launched at the European Parliament, by the Maruzza Foundation, EAPC, and the EUGMS, in September 2012. This sought to assist policy makers and national organisations to improve palliative care for older people in Europe. A working group with membership from both bodies (EAPC and EUGMS) and support from the Maruzza Foundation has been established to take this work forward.
The group is firstly undertaking a consultation exercise with EAPC and EUGMS members about palliative care for older people. The consultation is being undertaken between October 203 and June 2014 and aims to identify areas of collaboration between palliative care and geriatric care alongside the barriers and facilitators to on-going collaboration. Following this exercise, priorities for action will be identified for both the palliative care and geriatric care disciplines.
Dialogue between Geriatrics and Palliative Medicine
There is urgency to develop palliative care services for elderly patients, experts say. For this reason, the Vice-President of the European Parliament Gianni Pittella, in collaboration with the Maruzza Lefebvre Foundation, promoted a first ever dialogue between palliative medicine and geriatrics at an EU level. The event took place at the European Parliament in Brussels on September 25th, 2012.At this occasion, the European Association for Palliative Care (EAPC Onlus) and the European Union Geriatric Medicine Society (EUGMS) unveiled a joint manifesto promoting a European action plan on palliative care and geriatrics. The objective is to improve the quality of life of elderly patients with chronic diseases and cut back on health care costs by up to 60 per cent. Its ultimate scope is to insert geriatric palliative care in the EU agenda, hoping it becomes a human right one day.
John Dalli, European Commissioner for Health and Consumer Policy, and Mario Mauro, Head of Delegation of the Pdl to the European Parliament, intervened. The event is embedded into the framework of the European Year for Active Ageing and Intergenerational Solidarity.
Download The Manifesto in different languages using the links below:
Linking geriatrics and palliative care
As 90 per cent of deaths across the EU occur among people over 65, it is mandatory to improve palliative care access for them. Their needs, especially in the last stages of life, are numerous, but they often remain unmet because their discomfort is widely underestimated. Palliative treatments have historically been offered to cancer patients, but actually people aged 85+ are more likely to die from other illnesses, such as cardiovascular disease, diabetes and dementia, or simply of terminal ageing. As the population ages, the urgency of a dialogue between palliative medicine and geriatrics increases dramatically. By 2050, 1 out of 4 Europeans will be 65 years or older and 10 per cent will be 80+; in Italy and Spain, even one third will have reached this age. The two disciplines have much in common: they seek to optimise care for older adults with advanced illness, and see the patient and his loved ones as a unit requiring thoughtful, integrated care, rather than seeing the patient simply as a cluster of organs and conditions.
EU: what are the obstacles?
What is lacking today is a common European strategy. The EU leaves policymaking in this area up to member states which, in many cases, have failed to adopt the necessary measures to improve palliative care services. While more than 100m people per year would benefit from such treatments, less than 8 per cent of those in need have access to it. In 2003, the Council of Europe approved a recommendation on palliative care that was given to national governments so they should consider this - but only a few did. Almost all European countries have laws regulating euthanasia, however the right to palliative care is less widespread.
Inequalities across the EU
The UK leads the world in quality of dying, but many developed nations like Italy, Spain and Denmark lag a long way behind. The European scenario is characterised by inequalities, as different cultures deal with this issue in different ways. There are disparities within countries as well; rural/urban divisions (i.e. Italy), regional socioeconomic status (i.e. Spain) and decentralised governance seem to be the most important factors.
Where to start?
The Maruzza Lefebvre Foundation tackles this issue by bringing together policy makers, palliative care experts and geriatricians. Dialogue between the two medical disciplines at an EU level is an absolute novelty. The manifesto, developed in cooperation with EAPC Onlus and EUGMS, represents the first, concrete step towards an EU legislation on palliative care.
Belgium vis à vis the EU: Amongst European countries, Belgium comes in at 9th place in terms of palliative care.
Palliative care coverage: Palliative care is a young but burgeoning field in Belgium. There are three regional associations of palliative care (one each for Flanders, Brussels, and Wallony) which have been integrated comprehensively into the national health system. There is a broad public awareness for needs of elderly, chronically sick patients. Belgium is divided into 28 well-organized “palliative networks” which liaise with GPs to provide palliative care to patients upon request. National legislation states that palliative care is a right, and all patients in the country should have access to it.
People in need: Despite the availability of palliative medicine, opioid use is low in comparison with other western nations, indicating that much pain goes untreated. The most significant gap in an otherwise model system is the lack of standardised training for palliative care physicians and GPs, including the omission of pain management courses in general medical curricula.
Elderly: According to the IMF, Belgium's elderly population (65+) will increase by over 63%, and will reach over 25% of the country's overall population by 2050.
People over 65: 17.16% of total population.
People over 80: ca. 3% of total population.
Italy vis à vis the EU: Amongst European countries, Italy places itself at 12th place in terms of palliative care services, much behind Poland and almost tied with Latvia.
Palliative care coverage: Very inconsistent, with huge regional inequalities. In the North, patients have a much higher chance of receiving palliative care than in the South. Palliative medicine is not a recognised specialty: treatment is usually carried out by general practitioners, who often did not receive adequate training on pain management and emotional support.
People in need: Only 15% of incurably ill receive palliative treatment, and they are mainly cancer patients under 65.
Elderly: Italy has the oldest population in Europe. However, collaboration between geriatrics and palliative medicine is minimal.
People over 65: 30% of total population.
People over 85: 2,8% of total population.
The UK vis à vis the EU: The UK leads the world in quality of dying, and is currently developing an End of Life Care Strategy for England – the first of its kind in worldwide. The UK was the cradle of the modern hospice movement, and its pioneer, Dame Cicely Saunders, defined the ‘total care’ approach that is still embraced by professionals all over the world today.
Palliative care coverage: The UK continues to be the leader in palliative care development in Europe for what concerns quantity of services offered, high standards expected, and research environment.
People in need: The UK suffers a shortage of medical personnel in palliative care, where many vacant posts are unfilled due to insufficient qualified applicants. Other issues include training and drug availability outside of normal working hours.
Elderly: Although the UK population keeps ageing, it is projected to be one of the least aged countries in the EU by 2035.
People over 65: 17% of total population.
People over 85: 2,2% of total population, likely to double by 2030.
France vis à vis the EU: Amongst European countries, France comes in at 6th place in terms of palliative care, almost tied with Spain and Germany.
Palliative care coverage: Despite a few imperfections in French palliative care services, such as professional prejudices against prescribing opioids, the French system is noteworthy for the wide availability and variety of free palliative care services, the research structure and the continued backing by the parliament. Care is usually based from the hospital, with a majority of palliative care teams dedicated to working in this setting, although recently home care has also seen rapid development. In the last ten years, the vitality of this field has grown enormously, evidenced by the quantity of palliative care associations which have sprung up and consistent legislation which defends palliative care as a right for all citizens. The formulation and implementation of a national plan on palliative care has also been named as one of the three health priorities of the President of the Republic.
People in need: The situation is less shocking than in many other European countries; however, many patients are unnecessarily in pain due to reluctance of GPs to prescribe opioids (see above). A lack of training for doctors is also an issue.
Elderly: By 2050, one out of three inhabitants will be at least 60 years old, whereas the ratio in 2005 was one to five. In 2004, 22% of the population was at least 60 years old while the same group will make up to 35% by 2040. Old-age dependency ratio (ratio between 65 year olds and population of working age [between 15 and 64 years old] was 25% in 2008 and is expected to rise to 45,5% by 2060. By 2050, one out of three inhabitants will be at least 80 years old.
People over 65: 16,7% of total population.
People over 80: 5,4% of total population (predicted to be in 5,82% in 2025 and 8,75% in 2050).
Germany vis à vis the EU: Amongst European countries, Germany comes in at 8th place in terms of palliative care, almost tied with France and Spain.
Palliative care coverage: Uneven, although it is growing steadily and spreading to most areas. The region of Nordrhein-Westfalen is clearly the most developed, sponsoring research projects and pilot programmes to test different care models, while other regions have little or no care available. Not all Germans are sufficiently aware of the problem yet, although efforts made by organisations such as the German Association for Palliative Medicine have been taking steps to address this for the past several years. Germany does not have a national palliative care policy (nor a national cancer or HIV control policy or an essential medicines list). However, a significant law came into effect in 2008: the inclusion and financing of home care in the national health infrastructure.
People in need: Many elderly patients suffer from untreated pain. GP often are insufficiently trained as palliative care is still not part of all curricula at medical faculties.
Elderly: Old-age dependency ratio (ratio between 65 year-old people and population of working age [between 15 and 64 years old]: 24,2% in 2000; expected to rise to 34,9% in 2030 and to 52,6% in 2040.
People over 65: 17m (=ca. 21% of total population).
People over 80: 4% in 2009; this number is expected to rise to 13-15% by 2045. Between now and 2025, some experts even predict a rise of the percentage of this population group by 70%.
Spain vis à vis the EU: Amongst European countries, Spain comes in at 7th place in terms of palliative care services, almost tied with France and Germany.
Palliative care coverage: Uneven, with some highly developed regions, such as Catalonia and Extremadura, other medium-developed regions, like the Basque Country or Cantabria, and a few ones with relatively little development, such as Galicia.
People in need: Only about 40% of terminally ill receive appropriate palliative treatment. This is in spite of the fact that every year 55% of deceased suffer from a terminal illness, and around 250,000 of them need palliative care, according to data provided by the Laguna Palliative Care Hospital in Madrid.
Elderly: In three decades Spain will have the oldest population in the world, according to UN data.
People over 65: 17,5% of total population.
People over 85: 3,4% of total population.