It started with a dream. As early as 1949 Cicely Saunders, a nurse and social worker in London, had thought about new ways to care for dying patients, and she had started to plan her house for the dying. It took her until 1967 (and she had to study medicine in the meantime) until the St. Christopher's Hospice in the south of London opened its doors. From this first modern hospice palliative care was spread to many other countries in Europe and worldwide. Many of the early pioneers of palliative and hospice care have received their first training in St. Christopher's.
Some decades later, another centre of excellence on another continent, the San Diego Hospice, has formulated it's vision as "Transforming Healthcare". This may sound too ambitious, but 40 years after the initiation of St. Christopher's Hospice palliative care seems to have achieved part of this great vision. Palliative care is accepted as an emerging medical discipline in many countries in Europe. The hospice movement has recruited a significant number of volunteers in some countries and has become a major social force, changing slowly the attitudes towards death and dying in the community. In Germany, hospice volunteers visit school classes to work with the children on dying, death and bereavement issues. Indeed, a recent report to the Parliamentary Assembly of the Council of Europe described palliative care as a model for innovative health care policy.
The 12th congress of the European Association for Palliative Care (www.eapcnet.eu) is scheduled in May 2011 in Lisbon, and in spite of the economic problems more than 2500 participants from all fields of health care will meet and discuss state of the art treatment and new developments. The mission of EAPC is to bring together many voices to forge a vision of excellence in palliative care that meets the needs of patients and their families. In addition to the biannual congresses and interlaced research congresses the EAPC produces guidance and support, for example with a white book on standards and norms in palliative care . With 42 national associations in 26 countries as collective members as well as the individual members EAPC represents well above 50,000 health care professionals and volunteers in palliative and hospice care.
However, in contrast to this story of success, there are many countries in Europe and abroad where palliative faces serious barriers and challenges, or is not available at all. A recent workshop in the Ukraine demonstrated that patients have to suffer severely from cancer-related pain, because legislation and regulations impair the adequate use of opioids. Whereas I can treat patients with a wide score of different opioids and application forms at home or during inpatient treatment, with (nearly) no upper limit in the dosage in my service in Germany, my colleague in the Ukraine has only injectable morphine, which can be given only up to 50 mg per day, a dosage that is vastly inadequate for many patients. The EU-funded project ATOME (Access to Opioid Medications in Europe, www.atome-project.eu) has recently started with the aim of improving access to adequate pain relief in12 European countries.
In addition, palliative care in Europe is focussed primarily on cancer patients, and patients with other diseases such as advanced obstructive pulmonary disease often lack information about the option of palliative care or find it hard to access palliative care services. Problems to access palliative care have also been described for members of other ethnic groups, such as Irish travellers or migrants.
If palliative care is available, patients often get transferred only in the last stage of the disease trajectory, when the prognosis is limited to a few weeks or even days. In contrast, new research has demonstrated that most patients would benefit from an earlier integration of palliative care. A controlled trial with early and continuous palliative care counselling in one group and standard care in the other patients found not only higher quality of life and a lower percentage of burdensome aggressive treatments, but also a longer survival time in the group with palliative care counselling.
All in all, palliative care has passed its infancy, but is still in its adolescence, and more ups and downs are to be expected in that period of development. With the transition from the pioneer days to becoming part of regular health care new challenges emerge, and more strategic work is needed. Governments need to formulate national strategies on palliative care, but also include palliative care in national health plans for other diseases such as cancer plans. Europe needs a palliative care research agenda to facilitate the development, and this agenda has to consider the specificities of the field, for example with the collaboration of health care and social sciences. The EAPC will pick up these issues at the congress in Lisbon, where the Lisbon Challenge will be released, a call for access to adequate palliative care as a human right of every patient who needs it.
With all this in mind, we should not forget that palliative care should be patient-centered, with the focus on the suffering patient and his family. And when I had a long talk with a patient following admission to the palliative care unit, and am thanked because he found it smoothening to talk about his problems, or when I listen to a patient report that he has slept well for the first time in a fortnight, because his pain has been relieved with an adequate dosage of opioids, then I know that it is worth it.
Prof. Dr. Lukas Radbruch
Past President of EAPC
Klinik für Palliativmedizin, Universitätsklinikum Bonn
Sigmund Freud Str. 25, 53127 Bonn
Zentrum für Palliativmedizin, Malteser Krankenhaus Bonn / Rhein-Sieg
Von Hompesch Str. 1, 53123 Bonn