The five-year Horizon2020 research programme, which aims at the research of palliative sedation, began in March 2019 with the participation of the Hospice-Palliative Depratment of the Institute of Primary Health Care. Palliative sedation means the application of medicines that reduce the alertness level in such cases when the patient’s symptoms cannot be controlled properly with other treatments. The project with the cooperation of eight European countries examines the procedure’s ethical, legal and moral aspects besides the various clinical practices. We have talked about the importance of the research and about its effects in Hungary with dr. Ágnes Csikós, director of the Institute of Primary Health Care, and leader of the Hospice-Palliative Department.
Written by Rita Schweier
- What does it mean for Hungary and for the Hospice-Palliative Department in Pécs to join this European cooperation related to the examination of palliative sedation?
- Palliative sedation is a very complex and sensitive topic. Its application in the end-of-life, palliative care is a common practice abroad while in Hungary we do not have appropriate guidelines regarding it, as well as the multidisciplinary thinking is also missing, although having these would be a great help for the patients, family members, and for the providers as well. For us it is very important that we could join a consortium, research team, which includes countries such as the consortium leader Netherlands, and furthermore Belgium, England, Germany, Italy, Spain, and Romania. In these countries the application of palliative sedation is part of the clinical practice but of course there can be differences. Our aim is to make this opportunity available at home and to provide recommendations on the methods. What is less talked about, though no less important, is that it not only has clinical implications in the narrower sense, but it also raises many ethical and moral issues. The research examines these aspects and the kinds of challenges and hardships the relatives and family members have to face. It is a very systematic research that contains comparisons in the various countries both in regulatory and practical terms. It can be of great significance for Hungary to develop in this area of palliative care as well, and for us to be able to move forward in clinical practice while also helping the domestic patient care.
It is important to emphasize that the goal is not to shorten life but to relieve the symptoms. It is also important to speak and think about it more widely and in public because there are a lot of taboos and misunderstandings around the subject, and many times people put it under a hat with euthanasia, even though it is not what it is about. Palliative or terminal sedation is nothing else than symptomatic relief, which comes to mind when we cannot reduce the patient’s suffering in any other way. We can talk about its application temporarily as well but in most cases it is related to end-of-life care. It is very important to have such recommendations, clinical indication points that help the clinician in knowing when to think of its application and how to do it, which are the active substances he may use, in what dose, and how often. In the foreign practice it is never one person who decides about it but a team along with the patient’s doctor. It is essential to talk about the care plan with the family members too, which is part of the recommendations. In this extremely hard emotional situation we have to tell them what we are doing, why and how, and how it serves the insterests of the patient. Otherwise we create a lot of misunderstandings and opportunities to attack us. In my experience if this cooperation and conversation begins in time, there won’t be any problems and conflicts, but I have to say that it is going to be a long and time-consuming process. Of course, if possible, the patient must be involved too so that we know what is important to them.
- How has this happened in different care centers in Hungary so far?
- It is present in clinical practice at the moment too but it is important to standardize and regulate it because it causes difficulties to the clinicians that in such cases what it is that they can do and how the treatment should happen. It is important to develop a protocol, a series of procedural images, which serve as an accurate guide for the providers and which are not based on individual decisions and consideration, but on multidisciplinary agreement.
- Meanwhile, more and more patients and relatives decide and would like to decide whether the end-of-life treatment should take place in their homes or in one of the hospice institutions.
- It is true that most of the patients would like to stay at home and receive care there. Terminal sedation is possible in the patient’s home in several European countries, a good example for it is the Netherlands. It happens of course along strict protocols and regulations. The family physician can begin the treatment together with a palliative team. There are countries where it is not yet feasible at home; there they do it in hospitals, mainly in the hospice departments. I would already be glad if its order could be developed at least within an institutional framework.
- Pécs has an exceptional role though since there is a Hospice-Palliative Department at the university that is at the forefront in developing cooperations, organising and providing trainigs, and there is also a foundation, the Pécs-Baranya Hospice Foundation that has been helping patients and their relatives for years.
- We are indeed fortunate because the Clinical Centre and the Medical School has been supporting the teaching and practical introduction of the palliative care forms and our cooperation with the home hospice care providers is also very good. Over the past 10-15 years, this has led to he development of an integrated care model unique in the country. Here the patients can receive treatment in their homes and the clinicians can work together with the home care providers. The patients can get help from the members of the team based on their condition and needs: from a dietitian, a psychologist, a physiotherapist, a social worker, besides the doctor and nurses. The patients and their relatives can also access palliative care within the specialized outpatient care. The various forms of care can fortunately connect to each other, including the Department of Oncotherapy as well, and this way they can provide better standards of patient care and continuity.
- I’m afraid to ask: are there enough professionals for this in Pécs, and in the country?
- Unfortunately no, we need much more of them because these patients and family members require multidisciplinary help, which they could completely get if there were enough doctors and professional staff. We find the trainings very important regarding both the undergraduate, postgraduate, palliative license, and also the professional staff. Fortunately, there is a great interest in these from all patrs of the country, colleagues come from a varieties of clinical areas from for example Sopron, Szeged, Budapest and Dunaújváros: oncologists, surgeons, otorhinolaryngologists, dermatologists. It is wonderful because they can learn a lot from each other too since many of them have more decades of professional experience and practice. It is also fortunate that we have courses in the undergraduate training for which the medical students can enroll. Furthermore, it is rejoicing that there are such PhD papers in the field of palliative care that help the research.
From the aspect of further development it is a relevant question how we can improve financing, how we can involve additional resources, but primarily we are looking for those opportunities that contribute to ensuring the stability of the form of care. The aim is to broaden the financed forms of care, and to employ staff in full-time positions in this field as well. Many colleagues take home hospice care only as a second job after their clinical work because it is so poorly funded. We are also taking policy action hoping that we will succeed sooner or later.