Česky
How would you evaluate the functioning of OCHRIP so far?
We opened OCHRIP in spring 2014 and its capacity of six beds was filled immediately. We entered a new territory and from the beginning we set a high standard of medical and nursing care. We have been registered by the regional authority to operate the OCHRIP for children and the only problem remains the way of financing this type of care. We are in intensive negotiations with the health insurance companies about the reimbursement system and, despite the complexity of the problem, thanks to their helpfulness we have already made enough progress that a large part of the health care provided here has already been reimbursed and we are creating a system that will enable its reimbursement in the future. During the first year, we have already had several patients come and go, yet the length of stay in our ward remains many months. During the time our department has been in operation, we have eliminated a number of minor operational shortcomings and have fine-tuned and optimised both medical and nursing procedures. However, this in itself is a never-ending process. A number of details will still need to be worked out, and a number of problems are sure to come. However, based on our experience so far, we can proudly say that we have been able to implement our original plan to establish the first OCHRIP for children in the country very successfully.
Were there any weaknesses or problems that you had not originally anticipated? Would you do anything differently today?
The beginnings were not easy and I must openly admit that if it were not for the extremely helpful approach of the hospital management headed by the owner Ing. Sotirios Zavalianis, we would never have succeeded. We started from scratch. It was necessary to create lists of material, instrumentation, medicines, to create general operating rules for a completely new unprecedented ward, to make modifications to the existing premises, to introduce, for example, a camera system for monitoring patients and to provide countless other partial tasks. Last but not least, it was not easy to provide in a short time the erudite medical and non-medical staff in the number necessary for the opening of our department. Once again, the project was fortunate and we were able to recruit an extremely experienced and passionate Mgr. Pavlína Hesounová, without whom the establishment of our department would have been unthinkable.
The care of patients, especially paediatric patients in such a serious condition, is accompanied by many controversies and philosophical and practical questions...
It is true that these discussions are taking place across society and there are many conflicting opinions. The patients who are destined for hospitalisation in our department are quite different, but most of them are very seriously, sometimes terminally ill. They are patients with different types of diagnoses chronically affecting basic life functions, whose support is still needed to varying degrees. The current social morality, influenced by show business trends, shows the ideal of a young, beautiful, healthy and successful person and any deviation is unacceptable. The extreme in the form of disability and terminal illness must be removed from sight, preferably behind the high wall of a medical institution, and we can continue to pretend it does not exist. Many times we have witnessed a situation where the sight of our disabled and often terminally ill paediatric patients was not even tolerated by some of our medical colleagues. People who have never encountered a similar situation before - non-medical staff, for example - are subjected to such stress that in some cases they even collapse, and after leaving our ward, they talk about how the old Spartans knew how to deal with "IT" better.
How do you respond to opinions about the point of such care when the prospect of reversal and hope for improvement in the condition of these patients is slim? To what extent does this affect the staff in your department?
Most of the time we are lenient to the emotional opinions of the general public because under the pressure of the situation their thoughts are greatly influenced. The truth is that the psychological stress of working in our department is enormous. It lies largely on the shoulders of the nurses, who are in constant contact with patients throughout the shift. For the fact that they are able to maintain a high standard of care for these patients at all times and without fluctuations in such demanding conditions, they really deserve a great deal of thanks. In our department - doctors and nurses - we work together as one team. We are fully aware of the severity of our patients' illnesses and a certain helplessness in the face of a progressing incurable disease. It is true that many patients end their life journey in our ward. But it is our professional task to make their departure from this world, if necessary, as painless and as acceptable as possible for themselves and their parents and relatives. And that is the goal for which we want to make every effort together.
From your position as the head of a unique department, how do you view the euthanasia debate?
We are touching on an extremely sensitive area here. The more I deal with this issue, the more I realise how complex these topics are in terms of social morality, philosophy and ethics. I am struck by how many laymen, politicians and others feel called upon to make decisions on these complex issues. Most of these people have never even come close to a chronically ill person with a terminal illness, let alone understand what permanency entails. I'm almost allergic to statements like that, that modern medicine already has such resources that no one in the world needs to suffer at the end of their journey through life. Surely these people have never been in LDNs, old people's homes, children's nursing homes and similar facilities. Believe me, so much suffering, both mental and physical, is almost impossible to bear. That is why I think that our OCHRIP for children, which by its very nature is aimed at eliminating this type of hardship, is of great importance not only for the six patients currently hospitalized with us, but also as a bright hope for all other pediatric patients with incurable or prolonged illnesses, because, following our example, other facilities of this type will surely be established in other hospital facilities as well.
As a physician, where do you set the boundaries of life and death and how do you perceive the ancient art of dying (ars moriendi) when it comes to pediatric patients?
I myself have attended many international conferences on intensive care in the terminal stage of life in adults and children. Believe me, the largest intensive and ethical medicine capacities around the world address the issue of so-called EOL (end of life) decisions more or less successfully, depending on local resources, religious orientation and medical reserves. The issue of euthanasia, even in the area of children, is an integral part of these discussions. In our country, for example, the Czech Society of Palliative Medicine under the Czech Medical Society of J.E. Purkyně deals with these topics. In cooperation with foreign societies and colleagues, rules and recommendations are already being drawn up on how to proceed in the case of a dying child. This concerns, for example, the extent and adequacy of the care provided in relation to the severity of the organism's impairment and especially the patient's consciousness, the initiation of support for organ systems, connection to a ventilator and so on. We actively participate in such meetings and conferences in order to provide healthcare to our patients according to the most up-to-date world standards.
How do families of paediatric patients come to know about the existence of your department?
Before the opening of the ward last March, we were virtually full. Since then, we have established what is known as a waiting list, where there are always more patients waiting to be admitted to our hospital than the capacity of our beds. Most often we get calls from colleagues from various medical institutions, mostly with paediatric intensive care units, but we also get calls from people from home who have heard about us from relatives, from the internet, from doctors who have already placed a patient with us, etc. I must boast on behalf of the collective of nurses and doctors at this point, because we have received many letters of thanks from parents and relatives of our patients during our time here. The environment in which our patients and their parents reside could be called home without exaggeration. Each room is colourfully painted, there are drawings with children's motifs on the walls, there are sanitary facilities and a corner for rest, the patient has his own toys in bed, there is a television in the room. Doctors, nurses and specialist staff provide psychological help and psychological support to patients and especially to their parents and relatives, we have time to talk to them not only about their child but also about their life problems and all this together is very positive and encouraging.
What would you say to the general public, but also to professionals who question the need for such care?
Every society is judged morally by how it cares for its disabled, infirm, sick, elderly and dying citizens. As long as a person is healthy, it is easy to condemn the economically possibly disadvantageous health care for terminally ill children. However, it is imperative to point out that we also have patients who, given their underlying diagnosis, can and will be cured or their health improved to the point where they can undergo further therapy in a standard medical facility and ultimately live a full life! This fact is often overlooked and is one of the strongest motivators for the psyche of doctors and nurses in our department. Personally, I think that the necessity of such wards is demonstrated by the sheer number of requests for hospitalization of children from all over the country that we are unable to accommodate for capacity reasons. It should be noted that only the most difficult patients with a secured airway and the need for artificial pulmonary ventilation or support for other bodily functions are in our ward. There are many more "lighter" patients. The gratitude of the families whose patients are hospitalized with us speaks volumes. But the sincere thanks of parents and relatives when their child dies in our ward, thus ending his or her short life journey completely pain-free and in complete comfort until the last moment and with the participation of all the staff, I consider to be the highest recognition of our joint hard work.
