Psychosocial research
The National Strategy for Palliative Care 2010–2012 [1] declared the promotion of research in the field of palliative care an urgent task. This prioritization is correct and important. Each year the European Asso- ciation for Palliative Care (EAPC) holds a World Re- search Congress, at which important research activi- ties in all European countries and also other countries are presented. Switzerland has been a participant at the congress for many years; however, it is worth noting that the same group of people present their work year after year. This indicates that Switzerland has unfortunately not succeeded in significantly strengthening and expanding this group of research- ers. In international comparison, it is also noticeable that most of the research on palliative care in Swit- zerland is in the medical area, with clearly fewer studies being conducted in the areas of care, sociol- ogy, public health, and psychology.
Current topics in palliative care research in Switzerland
The working group for research of the Schweize
rische Gesellschaft für Palliative Medizin, Pflege und Begleitung (abbreviated as “palliative ch”) lists the current research focal points in Switzerland [2]: end of life issues, including decision-making processes and patients’ living wills, care of the dying, palliative aspects, and aspects of assisted suicide. In addition, there is a lot of research activity in the area of frequent symptoms, especially fatigue, significant weight loss, and pain, and there are some projects on specific topics in the areas of neurology, cardiology, intensive care, paediatrics, and different types of de- mentia. Much less research activity is found in the
Steffen Eychmüller, MD
172
Attractiveness of palliative care research, especially for junior scientists
In the field of palliative care, there is a demand for research projects that are highly practice-oriented and need-oriented. Researchers are supposed to give greater heed to the soft voice of the seriously ill and dying and their caregivers. The idea of bottom-up or grassroots research impresses people, but it is not usually feasible in practice. Due to a lack of time and a lack of research resources, specialists working in clinical practice are often hardly in a position to sub- mit research proposals that have a chance of being approved for a grant and to conduct research. Part- ners in academia as “engines” are urgently needed here and could, at least theoretically, join with spe- cialists to become successful duos of practical orien- tation and academic competency and to be brilliant in a joint effort. With regard to these prospects, Switzerland has definitely fallen behind in interna- tional comparison. So far, there has been only one single chair in palliative care at the universities (an endowed chair at the University of Lausanne), and for years, no one could be appointed to it. At pre- sent, no further professorships are foreseen. At the universities of applied sciences, too, there are no specialized institutes or specialists for research in palliative care focusing on research topics in this field. In the professional curricula, in particular in medicine and nursing, there are still no specialized programmes leading to nationally recognized titles. But in the end, this type of specialized postgraduate area of health services research.1 This is mostly due
to the fact that with the health system organized by the cantons, making it difficult to track patients’ paths, there are definite limitations to conducting this kind of research in Switzerland. Countries with national health systems are much more active in such areas of research.
Regarding patient groups, the research activities on patients diagnosed with cancer continue to be the most frequent. This accords only in part with the in- ternational trend. In recent years, other countries have put much more emphasis on integrating patient groups with cardiovascular disease and pulmonary disease, and research interest has also focused on neurological diseases and especially dementia. Based on the World Health Organization’s definition of palliative care [3] it follows that palliative care re- search should not be restricted to medical issues but should instead include research topics from other areas, such as ethics, sociology, and economics. But the non-medical area has been underrepresented in the research up to now. However, there is hope that this will change through the National Research Pro- gramme “End of Life” (NRP 67), which was launched in 2011 and covers a wide range of topics.
1 Health services research is a research area within health care system research at the microlevel of the health care system, in particular hospitals, doctors’ practices, or specific technologies in the health system. The subject of health services research is sickness and wellness services. Other factors, such as the intermediary institutions (health insurance companies, medical associations, etc.) and the national health policy that shapes services in the long term are not the direct subjects of research. But they are taken into consideration in the scientific studies as framework conditions of certain health services.
173 programme is needed – not only to interest young
specialists in a new field but also to offer them attractive professional development. Ultimately, in view of the definition of palliative care, it would be important to set up inter-professional professorships, such as a joint academic position for persons in nurs- ing and medicine, or also in public health and other areas. They would then collaborate on the broad and varied spectrum of palliative care and promote joint research.
Palliative care research in different language regions of Switzerland
When embarking upon a new field of study (such as research in the field of palliative care), it is an advan- tage when it can be done in one’s native language. Trying to understand the research methodology and dealing with statistics and research designs works best when one thoroughly understands the contents. For this reason, English as the “research language” is not always appropriate, and it is very understandable that members from the different language regions of Switzerland are joining together for these first steps in palliative care research. For instance, the Plate
forme latine de recherche en soins palliatifs et fin de vie (www.plrsp.ch) was established in 2010. In an exemplary manner, this platform not only brings to- gether researchers at different academic institutions but also, and most importantly, people interested in research at institutions in clinical practice, from hos- pitals to Spitex home care to nursing homes. This is a first step: not only to overcome barriers between ac- ademic institutions and the world of clinical practice and patient care but also as the researchers’ attempt to communicate together in their own language effi- ciently and understandably. The Plateforme latine de
recherche for the French-speaking region of Switzer- land is also open to Italian-speaking colleagues in Ti- cino. A similar platform is planned to be established for the German-speaking region of Switzerland in September 2011.
International cooperation
Another way to strengthen the national research ca- pacity in the field of palliative care is to co-operate with international partners. Here in Switzerland, we already have many contacts. They range from the Euro-Sentinella collaboration between the Swiss
Sentinel Surveillance Network (general practition- ers) and European countries to cooperation with the University of Ottawa in Canada (Lausanne), but there are also contacts within EU projects. Here, in particular two projects in St Gallen, EPCRC and OPCARE9, profited greatly and have expanded their own research capacities in recent years [4, 5]. In the
European Palliative Care Research Collaborative (EPCRC), research topics such as genetic disposition and the administering of opiates were examined. In
Optimizing Care of the Dying in 9 Countries (OP CARE9), the aim was to set up a research collabora- tion on events in the dying process and their effects on support, monitoring, and treatment. These pro- jects, funded through the EU 7th Framework are
lucky chances, since they boost intensive collabora- tion with clear objectives and capacity building for several years to come. At the international level, this has led to additional projects. Furthermore, it has become clear that if palliative care research in Swit- zerland does not become firmly anchored in the academic sector, it is unlikely to remain competitive in the future. The phase of pioneers, also in research, must now become consolidated through a phase of implementation and integration of palliative care in the national research landscape. This is the only way that Switzerland’s continued participation in larger international projects with considerable potential synergies for national research can be ensured.
174
In 2009 the Council of Europe adopted a resolution on palliative care, assessing palliative care as “a model for innovative health and social policies” [6]. This could and should also serve as a model for the future development of palliative care research in Switzerland: an innovative model for inter-profes- sional research and research in the related areas of health system, sociology, public health, economics, ethics, philosophy, and many other areas. With re- gard to the broad orientation of this research, the National Research Programme “End of Life” (NRP 67), launched in 2011, is a significant milestone. It remains to be seen whether this measure will suffice to firmly anchor this wide range of research in Switzerland. The financing of palliative care research
in Switzerland
In my experience, the pioneering phase is also over with regard to funding. In past years, first research projects could still find financial support outside of competitive research funds, based on goodwill. Now, this has clearly changed. Our research projects in all areas must bear critical evaluation in the form of the internationally established and common peer review system. With respect to quality, this is surely wel- comed, but on the other hand, there are few review- ers who know and recognize the specific aspects of palliative care, from its inter-professional nature to multidisciplinarity and the specific methodology and its restrictions in the research. Special funding pro- grammes could be an important step here. Another issue concerns the extent to which private founda- tions show commitment and interest in this much ne- glected area of research.
What is palliative care?
Palliative care is the care and treatment of persons with terminal, life-threat- ening and/or chronic, progressive illnesses. Palliative care begins early on, but its main emphasis is during the time when curing the disease is no longer considered possible and is therefore no longer the primary objective. Patients are ensured an optimal quality of life, adapted to their situation, up to the end of life, and their loved ones are offered appropriate support. Palliative care prevents suffering and complications. It encompasses medical pain and symptom relief and psychological, social, and spiritual support [7].
175 Conclusion
Palliative care is a broad and an interesting topic. In the light of the sociodemographic development in Switzerland and other Western countries, the social and political relevance of palliative care research is very high. Research efforts show that results cannot simply be “imported” from elsewhere but instead must be adapted to the cultural context of a country, or must be gained in the country itself. For this rea- son, an important objective over the years to come will be the establishment of a broad research com- munity in the field of palliative care in Switzerland. This should represent and revitalize the various axes: from clinical practice research to philosophical is- sues, from various regional foci in the sense of a vir- tual national research institute to international col- laboration – and all of this supported and solidly anchored within the academic world. This objective could best be reached in Switzerland by establishing modern, inter-professional professorships in pallia- tive care. In this way, palliative care could be further developed as an innovative model also in research.
References
1. BAG/GDK (Federal Office of Public Health/Swiss Conference of the Cantonal Ministers of Public Health). Nationale Strategie Palliative Care 2010–2012 [National Strategy for Palliative Care 2010–2012]. Available in German, French, and Italian at www.bag.admin.ch/palliativecare. A summary in English is available at http://www.bag.admin.ch/ themen/medizin/06082/10907/index.html?lang=de 2. “palliative ch” working group for research (Arbeits
gruppe Forschung): www.palliative.ch/index. php?id=126
3. WHO Definition of Palliative Care (2002): www.who.int/cancer/palliative/definition/en/ 4. European Palliative Care Research Collaborative
EPCRC: www.epcrc.org
5. OPCARE9, a European collaboration to improve care of the dying: www.opcare9.eu
6. Council of Europe Resolution 1649 (2009): Palliative care: a model for innovative health and social policies: http://assembly.coe.int/Mainf.asp?link=/Documents/ AdoptedText/ta09/ERES1649.htm
7. BAG/GDK (Federal Office of Public Health/ Swiss Conference of the Cantonal Ministers of Public Health). (2010). Nationale Leitlinien Palliative Care [National guidelines for palliative care] (p. 8). Bern: BAG/GDK.
Steffen Eychmüller, MD
Steffen Eychmüller has been medical director and head of the Center for Palliative Care at the Cantonal Hospital of St Gallen since 2006. He studied medicine and completed his resi- dency in Germany and Switzer- land. He then conducted research in Sydney and Perth, Australia. Eychmüller specializes in palliative care, psycho-oncology, and pain. He is a co-investigator in the European research project OPCARE9. From 2005 to 2009 he was co-president of the Schweizerische Gesellschaft für Palliative Medizin, Pflege und Begleitung (palliative ch).
Phone +41 (0)71 494 35 51 [email protected] www.palliativ-sg.ch
176
National Strategy for Palliative Care 2010– 2012
The number of deaths per year in Switzerland will increase in the coming years and dec- ades. Today, 60,000 persons of all ages die each year in Switzerland. The Federal Statistical Office (FSO) expects the number to reach 90,000 persons annually by the year 2050. This is due mainly to the age structure of the population: Predictions show that by 2030 the number of persons over the age of 80 will more than double.
In addition, owing to the rising life expectancy and medical advances, chronic illnesses and multimorbidity – when persons have several concurrent chronic conditions – have become more frequent. This affects not only older persons but also younger, seriously ill patients with cancer, neurological disorders or chronic, progressive diseases.
A future consequence of this development is that, for one, the need for extensive care and treatment in the final phase of life will be greater. For another, medical care and treatment will become significantly more complex.
In view of these diverse societal, social and health policy challenges, the Swiss government and the cantons decided to join together to promote palliative care in Switzerland. To this end, in the context of the National Health Policy Dialogue platform they launched the “National Strategy for Palliative Care 2010–2012”.
With the National Strategy, the Confederation and the cantons established goals towards closing the identified gaps in access to care, financing, awareness, training and research. The measures will be realized and the means used in a targeted-oriented way in a con- certed effort by all partners. The National Strategy focuses on increased coordination and on better utilization of synergies at the national and cantonal levels.
Palliative care is the care and treatment of persons with terminal, life-threatening and/or chronic, progressive illnesses. Palliative care begins early on, but its main emphasis is the time when curing the condition is no longer considered possible and is no longer the primary goal. The goal of the National Strategy for Palliative Care is to allow all chronically ill and dying persons to receive palliative care that is adapted to their situation in order to improve their quality of life.
Federal Office of Public Health (FOPH) Health Policy Directorate
Daniela Wäfler
Head, National Strategy for Palliative Care P. O. Box
CH-3003 Bern
Phone +41 (0)31 325 52 53 [email protected] www.bag.admin.ch/palliativecare
177
National Research Programme “End of Life” (NRP 67)
The NRP 67 “End of life” aims to gain new insights into the last phase of life. The knowl- edge useful to guiding decisions and practices during the last stage of life will be made available to decision-makers in the health care system, as well as to politicians and profes- sionals involved in the care of persons at the end of life. “Persons at the end of life” refers to persons – whether newborn infants, children, young people, middle-aged, elderly or very elderly people – who in all likelihood will live no more than a few months.
Perceptions and frameworks regarding the end of life in a state of flux
Perceptions and frameworks regarding the end of life are currently in a state of flux. New institutions, such as palliative care services or suicide assistance organizations, dedicate themselves to the needs of persons reaching the end of life. Demographic changes and new forms of family life challenge traditional models for support and provision of care to persons at the end of life. Living wills, the practice of suicide assistance, diverse expecta- tions towards medical care, and high health care costs, have become the subject of heated public debate.
Most people in Switzerland currently die in old age. Medical decisions influence the dying process in many cases. The focus of these decisions is to ensure a “good dying”, and no (longer) to fight impending death. The discourse on “good” and “bad” dying has become increasingly pluralistic and intense in recent years.
Better understanding of dying processes
New research is needed to understand these developments better. This is the rationale for NRP 67, which includes four main research areas:
– Dying processes and provision of care: The focus here is on the current state of care for persons at the end of life in Switzerland, on dying processes, and on attendant practices with a special focus on palliative care.
– Decisions, motives and attitudes: This area centres on decisions made during the dying process, and on the motives, convictions and attitudes underlying them.
– Regulations and proposals for action: The focus here is on normative rules such as legal regulation or ethics guidelines, as well as questions regarding distributive justice in the health system.
– Cultural concepts and social ideals: Death and dying have attracted a great deal of pub- lic interest in recent years. This research area includes questions regarding how death and dying are given meaning, cultural representations of death and dying, and relevant social normalization processes.
In February the Federal Council commissioned the Swiss National Science Foundation to carry out NRP 67 “End of life”. This research programme is endowed with a budget of CHF 15 million. The research projects will be selected after a two-stage procedure in 2011.