Author: Karolina Vlckova, MSc., Centre for Palliative Care
Date of publication: October 2020
Keywords: End-of-life care, Nursing Homes, Advance Care Planning, Palliative Care, Advance Directives
The Czech Republic is one of six research partners involved in mySupport study. The goal of this study is to implement the evidence-based Family Carer Decision Support intervention in nursing homes in six countries in Europe and in Canada. The main aim of this educational intervention is to assist family carers of people with dementia in decision making processes about end-of-life care for their relatives.
The Czech Republic, unlike other researcher partners within the study, is a post-communist country. Regarding palliative care, systematic development of this field started 10-15 years ago, however we still have to advocate its usefulness (Kabelka, 2020). We ask what are the specifics of end-of-life care in the Czech Republic and what are the barriers to implementation of palliative care? These questions were investigated during an interview with Matěj Lejsal, the director of a very successful and progressive nursing home Sue Ryder, based in Prague.
In the Czech Republic, as a consequence of the communist regime, a tradition of big institutions remains. Nursing homes are still the main providers of care for older people. These big institutions are usually located in buildings which were constructed during the 1950s. Moreover, there is a persisting paternalistic approach in the provision of health care which is supported not only by health care professionals and providers but also by patients and their family caregivers (Krizova, & Simek, 2007). In the Czech Republic physicians are highly respected among the public and viewed as authorative figures. Patients and their family caregivers are use to relying on the opinion of their physicians and are not use to been involved in the decision-making process.
Another main specific in care for older people is the fact that the Ministry of Health and Ministry of Labour and Social Affair do not cooperate and do not share the same vision of what care for older people should look like. ´The resort of social care and health care services are divided and there are strong systematic barriers to the cooperation of these two Ministries, ´nursing home director Matěj Lejsal reported. This problem at national level remains the same at regional level where municipal or regional authorities (who are usually the founder of nursing homes) are afraid of crossing the borders and support cooperation between the resort of social care and health care services. On an organizational level this leads to misunderstanding between nurses and social workers. Often they blame each other instead of finding a way to provide care together. ´We had one nursing home resident who lived for a long period of time in our nursing home and died in hospital and it was great. They are (hospital staff) our partners and they can do what we are not able to do, we cannot do everything. ´ This attitude is important to establish partnership and this can change the environment. ´We also do not require their cooperation, instead of that we invite them to cooperate with us for the best interest of the nursing home resident.´
Another big issue is the system of social services is diverse and fragmented in terms of financing and legal status. For example, some nursing homes are established by a regional authority, some of them are a non-governmental organisation and some of them are private companies. This means that social services are not standardised, and quality is difficult to measure. ´We cannot even say that if you pay more you are getting better service, ´ nursing home director Matěj Lejslal highlighted.
Regarding palliative care, systematic development of this field started 10-15 years ago, however we still have to advocate its usefulness (Kabelka, 2020). General palliative care is not developed yet and awareness about this topic is low in general practitioners which is a problem especially for nursing homes. Nursing homes in the Czech Republic usually do not have physicians in their team but they cooperate with general practitioners. ´Another problem is also insufficient availability of physicians which means that in case of a decrease of physical condition we must call the emergency and transfer the nursing home resident to the hospital’, Mr Lejsal reported.
Another problem: ´We are missing shared vision of how palliative care should be delivered among professionals. ´ In the Czech Republic, there is more than one professional society which trains palliative care professionals. However, these organisations do not always cooperate with each other which makes defining the vision for end-of-life care difficult.
In terms of the development of palliative care in nursing homes, there is also persisting tendency to paternalistically protect nursing home residents and fear of neglect of care at a regional level in founders who usually have distorted ideas about palliative care because they do not have any experience with it. This means that health care staff within nursing homes do not always have support for providing end-of-life care and residents are usually transferred to hospital. Another issue is a lack of health care staff availability. According to nursing home director Matěj Lejsal: ´The barrier for implementation of palliative care is lack of nurses. Many nursing homes do not have nurses available 24/7. ´
Advance directives are also still not well-known and/or used in the Czech Republic because in general population 75 % of people do not know what it is and only 43 % of physicians have right information about it (STEM/MARK, 2015). This fact makes providing palliative care in nursing homes in the Czech Republic even more difficult.
End-of-life care in the nursing homes in the Czech Republic is still at the beginning of its development and it needs more cooperation between social services and health care on national, regional, and organizational level. Cooperation between nursing homes and general practitioners needs to be especially supported. The vision of what this care should look like and how it should be delivered needs to be clearly stated and needs to be understandable and acceptable for health care professionals, service providers and for residents of nursing homes and their family caregivers. Also, residents of nursing homes and their family caregivers need to be supported to participate in the decision-making process and care planning. To learn more about the benefits of the benefits of patient autonomy, advance care planning and advance care directives read Dr Nicola Cornally’s blog article, ‘Advance Care Planning as a Medium for Providing Care Aligned to Peoples Wishes’.
Meet the authors:
Matěj Lejsal MSc., is a director of Nursing home Sue Ryder and research fellow at Faculty of Humanities at Charles University. He deals with social and health care systems, management of organizations operating in this area. It focuses on the integration of social and health services at the national, regional and organizational levels. It deals with the culture of the organization in the social and health field. Uses practical experience in the management of a non-profit organization operating in social and socio-health services.
Karolína Vlčková MSc., is a research fellow in the Centre for Palliative Care in Prague. She is doing PhD at First Faculty of Medicine at Charles University on topic Prognostic Awareness in Patients with Advanced Cancer. She is also Assistant Professor of Medical Psychology at Third Faculty of Medicine at Charles University in Prague. She worked on several studies on neuropsychological assessment of dementia in the National Institute for Mental Health and participated in the project on reminiscence therapy which involved people with dementia and their caregivers.
Kabelka, L. (2020). Building Specialized Palliative Care for the Czech Republic: A Fifteen-Year Leadership Journey in a Developing Country. Journal of Palliative Medicine, 23(5), 607-610.
Krizova, E., & Simek, J. (2007). Theory and practice of informed consent in the Czech Republic. Journal of medical ethics, 33(5), 273–277. https://doi.org/10.1136/jme.2005.015164
STEM/MARK. (2015). Dříve vyslovené přání – výzkumná zpráva. Retrieved from: https://www.umirani.cz/sites/default/files/custom-files/cesta-domu-zprava-umirani-a-pece-o-nevylecitelne-nemocne-2015.pdf