Česky
What is the state of long-term intensive care for children in the Czech Republic?
There are only two facilities in the Czech Republic that provide long-term intensive care for children with ventilated children (dDIOP with ventilation), here in Hořovice and at the Military Hospital in Olomouc. There is only one long-term intensive care unit for children without ventilatory support (dDIOP without ventilation) in Hořovice. We would like to and are working intensively on this together with other experts within the Section of Paediatric Palliative Care of the ČSPM ČLS JEP to create a sufficient network of such wards. According to expert estimates, one ward in the region that can take care of such a child patient in the long term could be enough to bring families closer. The aim is therefore to decentralise this type of care. This is also one of the sub-objectives of the Concept of Care for Children and Adolescents with Serious Life-Limiting or Life-Threatening Diseases and their Families, so that this type of care in the Czech Republic is systemically grasped and sufficiently ensured.
How does children's palliative care work in the hospital in Hořovice?
In our hospital we provide care that is long-term, intensive and of course palliative care is an integral part of it. There are two departments here, which are essentially independent of each other. The first is the children's intensive care unit, which takes care of patients who need replacement of some of their vital functions, most often breathing. These are children who are wholly or partially dependent on ventilatory support. The second is the Children's Intensive Care Unit (CICU), where we care for children who are not dependent on ventilatory support and also their carers. Ventilatory and non-ventilatory care is relatively separate in paediatric patients, unlike this type of care in adult patients where there is considerably more permeability between the two. In fact, in paediatric patients it is very often the case that if a child is put on long-term ventilatory support, by the nature of the diagnosis there is little chance of being taken off the ventilator. Exceptionally, it does happen that a patient is able to be weaned off, and comes to our DIOP. Unfortunately, this doesn't happen very often, so we don't have many patients in common.
In general, there is a smaller group of children with serious life-limiting diagnoses who need long-term ventilatory support, and there is definitely a larger group of children who do not need ventilatory support, and this is exactly the type of care we need to expand nationwide.
Who are your patients and where do they come from?
Non-ventilation DIOP for children is a segment of care that is lacking in the country. Therefore, we very often take children from teaching hospitals in different regions, most often from the intensive care setting when resuscitation or intensive care is no longer indicated, the child has stable vital signs and a relatively stable condition, but for some reason it is not possible to discharge the child to home care. The reasons may be many - incomplete stability of health status, unfinished long-term medication, nutrition, or we see that families need time and space to learn how to care for the child, for example, to care for different inputs, suctioning from a tracheostomy, feeding into a PEG, etc. These are the physical aspects. But very often they also need time to come to terms with the new situation. For example, the fact that they have had a healthy child up to now and as a result of a serious accident suddenly have a child permanently dependent on their care. In the time since we opened the DIOP ward, which is 3 and a half years, I have seen that if a family comes from an acute setting, it is easier for them to go home from our ward after various lengths of hospitalization. We have time and space for them here, and we are dedicated not only to medical care, but also to supporting the whole family - a psychologist, a chaplain, a social worker can come. Often a family suddenly finds itself in a difficult situation, when it loses part of its income because one of the parents has to stay permanently at home with a sick child.
What is the age limit of your patients and what about the children who grow up?
We have children 0-19 years old. Then there is a big problem and it's a big question for palliative care in general - what about the children who reach the world of adult medicine? It's very difficult for families and for us because it's not easy to find a suitable workplace. They are not adults. And it's happening more and more often because with good diagnosis, good care and good medicine, children with serious diagnoses live to adulthood.
About 20 years ago, for example, children with cystic fibrosis lived to an average age of 15. Now it is well over 20 years, and this will surely increase with modern treatments (gene therapy, ATB treatment, inhalation, transplantation).
The world of adult medicine is not quite ready to accept patients with psychomotor deficits and handing them over is even more difficult. Previously, they were hardly encountered.
Why not ARO? Why not ICU?
Children who no longer need it should not be admitted to an acute care bed. ARO or ICU wards are aimed at stabilization and ideally recovery, discharge home. The moment care becomes long-term or does not lead easily and quickly to recovery, the child should not stay there for a long time. Once there is a stable chronic patient who has no chance of recovery at all or over a very long period of time, it is a major burden on the ward itself and its staff, both in terms of attitude and behaviour change (for example, teaching parents) and economic burden on the whole health system.
The environment and care in a DIOP unit are inherently different. That is why we are working so hard to get this type of care for children into the health care system and also into the reimbursement ordinance. For many years it has been in place for adult patients, but not so much for children. We are therefore negotiating, as part of our conceptual work, with representatives of the insurance companies, that is, the payers of care, and representatives of the Ministry of Health to get it into the care system.
How big is your department?
The DIOP ward without ventilation has 6 beds, the ventilation ward has 13 beds. It is not desirable for the ward to be large. However, it is also not a solution to have two beds in the acute ward because, as I mentioned, a different type of care is needed.
We have separate nursing teams on our wards. The nurses in DIOP know why they go there, it's not really a job for everyone. Some people are typically set up for an intensive care or resuscitation environment, they want to do intensive care but not long-term care, and the same goes for doctors. DIOP is a lot about good nursing care, long-term stabilization of the patient and family, communication with the family.
What are the most common diagnoses?
To begin with, it is important to say that we have almost no children with a cancer diagnosis. These are patients of large cancer centres (haemato-oncology clinics) where care is as focused as possible on the child's recovery. However, approximately 20% of children are not cured of their cancer. They then go home from the care of the clinics, where we can offer them the care of a home hospice (mobile specialist palliative care) if that is the family's wish at the end of life. However, the vast majority do not end up in long-term hospital care.
So we have almost exclusively non-cancer diagnoses, which are a wide range - various birth defects, whether structural, for example severe inoperable heart defects or central nervous system defects, complex chromosomal defects, inborn errors of metabolism. These are often rare diseases and rare diagnoses. We also care for children with various central nervous system disorders.
"How do you come to terms with the fact that your previously healthy child suddenly has a slim chance of recovery? I have to admit that it's challenging even for me to talk about it."
Is it possible that the situation will change and a miracle will happen?
Yes, even here, in this group of children, a miracle can happen. I have seen a child with an unfavourable prognosis referred to us and then transferred and left "on his own". Two children have improved incredibly in this way. One boy did leave in a wheelchair because he still had a spinal cord injury, but even so, from the unfavorable condition of an unresponsive boy in a vigil coma, he left here a sitting and talking boy, albeit at a lower mental level than would be appropriate for his age. The second patient was a lady who left literally "on her own" after a severe head injury while skiing.
That is why this care is important too, it gives time and space, and sometimes a miracle happens in this group of children.
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