Skip to 0 minutes and 9 seconds In this session, we’ll be looking at how palliative care has developed across Europe. I spoke to six specialists conducting research into palliative care provision from the countries involved in the InSup-C project. The UK is often seen as the cradle of palliative care with the work of Dame Cicely Saunders taking the lead. Professor Sheila Payne from Lancaster University explains. The modern hospice and palliative care concept was initially developed by Dame Cicely Saunders in the 1950s and 1960s as a special initiative outside the NHS, the British national health care system. She opened St Christopher’s Hospice in South London in 1967 with inpatient beds and rapidly expanded provision to include home care and day care programme.
Skip to 0 minutes and 58 seconds Her model of palliative care was based on three pillars– clinical care, education, and research. However, other countries soon started to develop palliative care similar to the UK, with pioneers developing it in response to suffering at the end of life for cancer patients in particular. In the early ’80s, some health professionals realised that there were different and better ways of caring for patients at the end of life. These pioneers looked for advanced and comprehensive training about what they thought the care for terminal patients should be, some founded in the United Kingdom and some others in countries like Italy or Canada who were developing palliative care.
Skip to 1 minute and 38 seconds Some regional health services, such as those in Canarian and Catalan, the Spanish Association Against Cancer and the Hospital Order of San Juan de Dios, encouraged and supported the pioneers to develop more units with more beds, better equipped, and run by palliative care providers. By the ’90s, the first home care teams appeared. And in 1994, there were some examples of coordination with primary care teams. Nowadays, palliative care is part of the basic provision of the Spanish health system. And this is relatively well-implemented in all regions. Whilst Western Europe has more established palliative care, other countries, particularly from the central independent states, are still developing palliative care. In Hungary, although palliative care started later, they have nevertheless developed many services.
Skip to 2 minutes and 32 seconds The development of palliative care started more than 25 years ago in Hungary. During the late ’80s, two groups started to work within the National Institute of Oncology, offering for the first time in Hungary complex psychological support to cancer patients. Their services were based on the needs of patients and on open communication between patients and physicians, which was not a common practice in those days. In those days, the hospice philosophy was completely unknown in Hungary. Therefore, the primary aim was to attract attention to the problems of thousands of dying people. In 1995, the Hungarian Hospice Palliative Association was established with the collaboration of 19 hospice service providers.
Skip to 3 minutes and 21 seconds The following achievements and developments of those years are mostly due to the activity of the Hungarian Hospice and Palliative Association in collaboration with civic and professional organisations in Budapest, Miskolc and Szombathely. In the UK, we have the national End of Life Strategy to encourage good practice in end of life care. There are two important policy developments that have influenced palliative care in the United Kingdom– the NICE guidance for palliative care for adults with cancer in 2004, and more importantly, the End of Life Care Strategy published in 2008. The latter policy aimed to improve palliative care for patients in all environments and with all conditions, not just cancer.
Skip to 4 minutes and 10 seconds As the UK is made up of a number of countries, there are slight differences in policy between England, Wales, Scotland, and Northern Ireland. At the very least, the World Health Organisation has recognised end of life care is a human right. Indeed, the European Association for Palliative Care launched the Prague Charter in 2013, reinforcing it as a basic human right. Many countries have these initiatives, and in the Netherlands this has been backed with money. The national government in The Netherlands wants to improve the quality of palliative care. In order to do so, in 2014 they launched the National Programme for Palliative Care. This is the second time the government has implemented a large developmental programme.
Skip to 4 minutes and 58 seconds Also at the end of the ’90s, there was a large programme through which many developments have been brought about. In its new programme, which will last until 2020, the government has planned to invest 8 and 1/2 million euros each year in further development of palliative care. By means of the programme, PALLIANTIE more than care, this is helping stimulate research and education as well as improving the care in daily practice. Part of this programme is the establishment of eight centres of expertise connected to the eight university medical centres. These centres of expertise work with the also-new Consortia for Palliative Care, and are involved in collaborations between regional organisations of care providers, educational institutions, patients organisations, et cetera.
Skip to 5 minutes and 52 seconds These consortia play a major role in practical quality improvement in palliative care as well as in prioritising regional focus point in all three aspects– daily care, research, and educations. In other countries this has gone further and the need for palliative care is a legal requirement. The government organised what we have in Belgium networks that could coverage the whole country so that every patient, wherever he is cared for, could have advice or support from dedicated palliative professionals. And on top of that, we had the law. In 2002 there is the law on palliative care that states that every patient can ask for palliative support when there is the wish or the need for palliation.
Skip to 6 minutes and 43 seconds A second law was the law on the right for the patient. So every patient can refuse treatment but also has the right to be informed about diagnosis and prognosis. So it is a very good stimulation to communicate better with the patient. And at the same time, we have the law on euthanasia, where the patient has the right to ask for euthanasia. But that does not mean that there is the right for euthanasia, since every physician can refuse for personal or ethical reasons. These changes in policy have often been a result of pressure from public awareness, which has helped to inform the services required.
Skip to 7 minutes and 29 seconds There is more development in the last decade and growing support from other stakeholders, including government sickness funds and physician boards. This is not only related to policy, but also to the growing awareness of hospice and palliative care, probably due to the large number of volunteers and volunteer services. There even has been a national media awareness week in November, 2013, with more than 40 TV and radio contributions on hospice, palliative care, death, dying, and bereavement. There are some films, German and international ones, for example, the film about the patient diagnosed with advanced brain cancer called Halt auf freier Strecke, which raised public awareness.
Skip to 8 minutes and 19 seconds There is the National Charter for the Severely Ill and Dying, initiated and organised by the combined German medical associations. More than 50 organisations participated in this charter, including the hospital association, the sickness fund, and several government representatives from different federal states.
The development of palliative care across Europe
The following steps feature five short films focusing on a number of topics:
- The development of palliative care across Europe
- Palliative care services
- Pain control
- Palliative care education
- Essential components of palliative care
The films feature contributions from palliative care specialists who were involved in the InSup-C project. In this first film, you will hear how palliative care has developed in different ways across Europe. The film begins with the work of Dame Cicely Saunders who developed the modern hospice and palliative care concept in the 1950s and 1960s in the UK. You will hear about how this work informed the palliative care movement and policies within other European countries.
While watching this series of short films, you may wish to make some further notes about palliative care within your own country and the issues being raised in the videos. Your notes will be useful for a later activity.
For those of you who are interested, you can find some optional reading in the downloads section below.
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