Which children can be our patients?
A child with any diagnosis that is defined by doctors as incurable and which threatens and shortens his or her life.
In case the diagnosis is not clear, but there is high probability that the illness is terminal, we accept the child for a specific period of time. Then we discharge the child to a specialized unit for a regular medical examination.
What illnesses do the children in hospice suffer from?
•illnesses, when the treatment is ineffective or failed, e.g.:
cancer diseases not responsive to cytostatics or radiation and the tumour cannot be surgically removed, serious illnesses of liver and kidneys with no chance of transplantation, serious congenital heart diseases or cardiomyopathy when surgery or heart transplant are not possible or were not successful etc.
•diseases, where treatment can prolong life in a good quality, but where health condition gradually worsens, e.g. cystic fibrosis
•illnesses that we cannot cure, nor can we slow down worsening of the medical condition, e.g. serious metabolic illnesses, metabolic disorders of lipids, carbohydrates, amino acids, neurodegenerative diseases, muscular dystrophy etc.
•illnesses with severe neurological damage, which do not worsen, but the risk of fatal complications is very high, e.g. severe cerebral palsy
•state after severe injury or brain damage e.g. after car accidents
•severe birth defects of the brain or other organs, e.g. Edwards syndrome, Patau syndrome, other birth syndromes etc.
Criteria of admission to children´s hospice
•the illness of the child is incurable, it causes worsening of condition and the death of the child is inevitable
•life-prolonging cure was finished. There are illnesses that are incurable, but the treatment can prolong the child´s life, e.g. incurable cancer diseases, cystic fibrosis, etc. Such treatment is provided by specialized hospital units. Life-prolonging treatment always brings certain decrease in the quality of life (repeated injections and blood tests, side effects of medication, hospital stays, etc.). When the health condition of the child gradually worsens, the life-prolonging treatment can bring more suffering than benefit. Palliative care in hospice does not worsen the suffering; it focuses on symptom control (pain, shortness of breath, etc.) and improvement of quality of life.
•child wishes to stay in home environment and parents agree
•parents are able to take care of the child 24/7. In case of alcoholism, drug addiction, severe psychological disease and similar conditions, the child´s stay in the home environment is not possible.
•parents have signed informed consent with hospice care (after discussion with its employees)
•the place where the family lives is not more than 2 hours car ride away from Bratislava
When is it appropriate to ask for the help of hospice?
We provide our services to terminally ill children not only in the last weeks and days of their lives. Our experience proves that the sooner the families ask for help, the more we can help improve the child´s quality of life. When times are hard, you will be able to find support in the relationship that we will have established and the knowledge and experience that we have.
How to ask for help from the hospice?
Admission to Plamienok hospice can be requested by someone from the child´s environment – family, doctor (general practitioner or specialist).
They may call or email us.
PLAMIENOK n.o., Zadunajská cesta 6, 851 01 Bratislava
+421 905 596 760
Before admission of the child, we consult child´s medical condition and diagnosis with the doctor (specialist in the hospital, GP), who was taking care of the child. If the diagnosis fulfils the admission criteria, we invite the parents (guardians) to a meeting. The meeting takes place wherever it is most convenient for them (in the hospital, at home, in hospice offices). We ask them to let us know what kind of help they need and we inform them what we can do for the child and the family. If they decide to accept our care, they sign an informed consent and we will plan the first visit in the following days.
Can we ask for a home visit ourselves?
Parents or the child can ask for a home visit anytime they feel the need.
The reason may not be just the worsening of the medical condition (increase of pain, cough, fever, etc.) but also when they do not feel well (they are afraid of what will happen, they have no support in the family, they feel they need to handle everything alone, they feel anxious, the child does not want to communicate with anyone and they do not know what to do, partner does not admit the severity of the situation, etc.). Hospice does not focus solely on physical difficulties, but tries to help also with emotional difficulties. In Slovakia we are not used to ask for help, if the origin of our pain is not physical. However, it is part of our job as much as the treatment of physical symptoms.
What do the visits look like?
The visits are always conducted by two professionals. Their occupation is based on the need of the child and other members of the family. For physical aspects there is doctor and nurse, for social problems a social worker, the supervision of the accompaniment is done by a psychologist. Every employee of the hospice is informed about all areas (i.e. psychologist is also aware of the health problems that may develop). Should the family wish a particular team member not to visit them due to personal reasons, we will try to respect this wish.
If the health condition of the child is stable, we conduct planned home visits. The family is always informed in advance by phone who and when will the visit take place. When stable, children with oncological diseases are visited once in seven to ten days, children with non-oncological diseases (metabolic, neurodegenerative etc.) are visited once in two to four weeks. Should the medical condition of the child worsen, after a phone consultation, we visit the child immediately.
Home visits last ninety minutes on average.
Do we need to pay for the hospice services?
No. All services including lending of the medical equipment are provided free of charge. They are financed from grants and from individual and corporate donations.
What if we come to the conclusion that the hospice care does not suit our needs?
If, after some time, you come to a conclusion that this type of care does not suit the needs of your child, you may ask for help from another organization or an individual – hospital or a doctor. The hospice care will be terminated. Should you decide to return to home care after some time, we can renew care.
Is home treatment as effective as hospital treatment?
Terminally ill children can receive equally effective treatment at home as in a hospital (provided that the necessary medication and medical equipment is available). We provide our care also to children, who need to use ventilation, are with impaired consciousness, unable to ingest, unable to move.
If the medical condition of our child worsens suddenly, who is going to help us?
Hospice employees will teach you how to immediately assist your child. After the admission they bring all necessary medical equipment and will let you know when and how to use it. For example should the child need oxygen, you will turn on the oxygen concentrator, in case of problems with swallowing, you will use a suction pump to suck the content of the mouth. If the child needs to lie down most of the time, you will use a special mattress to prevent bedsores. All the equipment that helps children in the hospital can be brought home as well.
The doctor from the hospice will explain in detail the treatment and use of medication, which will be prescribed in case of sudden worsening of the medical condition. For example if pain appears or increases, child starts vomiting, having seizures, constipation, fever, etc., the necessary medication will be at hand and you will know how to use it. You can consult a hospice doctor by phone 24 hours per day 7 days a week.
When admitting the child to the hospice care, its employees will also bring a special medical materials kit, e.g. bandage material, nutrition aid, movement assistance, etc. You will be trained to use it. Together we will also try to find a person (from family, neighbours, medical worker) that lives nearby and could help you with care and support in case of emergency.
We provide our services 24/7. Through a phone consultation we will inform you what to do until the doctor and nurse arrive for the visit.
What if we cannot manage home care?
The care of a child, whose medical condition is gradually worsening, is always difficult and demanding. Whenever you feel that the pressure on you and your family is unbearable, you may ask for hospital care. Even if the child dies in the hospital, the time spent at home has its deep meaning.
Is it possible to provide equal level of professional care at home compared to hospital? What if something gets neglected?
There are very few circumstances (e.g. serious bleeding) when hospitalization is unavoidable. If the family is equipped with and trained to use necessary medication and medical equipment, it is usually possible to provide the same level of care at home as in hospital.
What if the medical condition of our child improves or new medication or treatment becomes available?
If the medical condition of the child improves or new treatment with a perspective of saving the child´s life becomes available, the child will be referred to a specialized unit in a hospital.