Some 85,000 Ukrainian children need palliative care, which would save them from unbearable pain and suffering. But there is no clear legislation in this area, and doctors are reluctant to prescribe strong painkillers. The new EU project will provide free legal support to seriously ill children and their parents over the period of 2018-2020. Help centres already operate in seven cities: Rivne, Vinnytsia, Sumy, Kharkiv, Dnipro, Mykolayiv and Mukacheve.
A five-year-old Matvii from the city of Rivne has disappointing diagnosis of amyotrophic lateral sclerosis.
His paralyzed body needs a change of position every 30 minutes. And very soon, he will need a device for artificial ventilation of his lungs.
There are more than 20 million children all around the world who have to live with a serious illness that limits their life expectancy, or live in a state that causes physical and emotional pain. Such children are born and die every day.
However, the observance of their right to the highest achievable standard of living, anesthesia and death with dignity depend only on the society in which they were born and live.
According to the Ukrainian Center for Social Data, 84,967 little Ukrainians needed palliative care in 2017.
It is really difficult to say how many such children exist, since medical records and a large number of false diagnoses do not allow accurate data to be obtained.
Every year on the second Saturday of October the world holds the World Hospice and Palliative Care Day. This year it falls on October 13.
The day before we talked with professionals in order to have a wider look at the available barriers to access to the palliative care in Ukraine as well as to find out how the healthcare system sees the problem of child palliative care today.
Everyone understands in his own way
Ideally, palliative care is an integral approach that allows improving the quality of life of patients and their families facing a serious illness.
According to the definition of the World Health Organization, such care:
- provides relief from pain;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help the family cope during the patients illness and in their own bereavement.
There is still no clear legislation in Ukraine that would determine a procedure for the provision of services to children in need of palliative care.
“While working in the healthcare sector, I am not afraid to say that the level of Ukrainian medicine in the provision of palliative care to children is close to zero.
We violate the rights of our little patients,” states Olena Riha, Professor, Pediatrician, International Trainer of Education Palliative End of Life Care Pediatrics.
“Many doctors, health managers, who have undergone training in accordance with the Soviet educational standards, understand palliative care in the old way: if there are no methods for recovery, then the person receives medication for the treatment of symptoms until his or her death, and dies in a hospital.
However, the philosophy of a new, modern understanding of palliative care is completely different”.
The problem is not only in old thinking, but also in education.
“We do not have undergraduate and postgraduate training of doctors and nurses. It is necessary to introduce such specialities as palliative care doctor or palliative care pediatrician.
Because whatever laws we publish, our ignorance will slow down the whole system“, says Mrs. Olena.
Doctors are afraid to prescribe morphine to children
In Ukraine, cases where little patients with unbearable pains did not receive adequate anesthesia still happen.
Although, it is similar to torturing according to international rules.
“The progressive resolution of the Cabinet of Ministers of Ukraine No. 333 (“On Approval of the Procedure for the Purchase, Transportation, Storage, Dispense, Use and Destruction of Drugs, Psychotropic Substances and Precursors at Health Care Institutions”, – author) occurred back in 2013, bylaws – in 2015,” tells Oleksandra Bratsiun, Palliative Care Development Adviser of the Ministry of Health, Palliative and Hospice Care Expert.
“However, in 2018, among doctors there is still an outdated practice of prescribing anesthesia.
There was a case in a town near Kyiv recently: The patient was not prescribed any anesthesia drugs. Neither the head of the healthcare facility nor the family doctor knows the legislation”.
According to the expert, not only ignorance of the current legislative norms and fear of strong painkillers is the reason that doctors do not observe the protocols, but also the total lack of responsibility for omission.
“If patients complain to their regional Health Department or to the head of the healthcare facility, or even to the Ministry of Health, there has been no precedent when any doctor was liable in a form that would make it clear that it cannot be done in future“, she thinks.
Olena Riha confirms that there is no experience in the wide use of opioids in children’s practice in Ukraine. Unfortunately, fears overpower knowledge in this area.
“My colleague told about the case when a child with the strongest manifestations of bone pain was prescribed morphine only when the child was already dying. And only at the resuscitation department.
There are many such cases, not to mention the most elementary – use of pain assessment scale for diagnosis of it in children. There is no such approach in routine medical practice“, says pediatrician Olena Riha.
She mentions Kharkiv Oblast as an example. There in the cancer register (card index of each case of cancer, its course and treatment, – author), about 400 children are registered, and the oblast procured just 5 vials of morphine syrup for a year.
The problem exists in the availability of anesthesia drugs. For example, Kharkiv Oblast has approximately 1,200 drug stores, and only 24 of them sell opioid analgesics and psychotropic drugs.
“Sometimes people (sick, persons with disabilities, single) from distant villages have to visit the regional center every 2 weeks”, explains the pediatrician.
Morphine syrup cannot be purchased at a retail drug store even on prescription. It is procured only on a centralized basis. Children continue to feel pain“.
One on one with your hero
Palliative care is not just pain relief, but also systemic support for a family fighting the disease. And this, unfortunately, is not available still.
Let’s turn to the progressive international practice. There, palliative care for children, for the most part, is provided at home. When parents first find out about a child’s diagnosis, they immediately receive the care of the palliative care team.
No one leaves the family alone with their problems – doctors, psychologists, social workers work continuously. Attention in this family is paid even to grandparents, brothers and sisters of a sick child.
And even after the child dies, the palliative care team continues to support the family.
“In Ukraine, people live silently with their grief. Our people are very patient. Unfortunately, there is no effective state policy in this area as of today. There’s a lack of consistency“, mentions Olena Riha.
She says that in 2016, on the basis of the Kharkiv children’s home, they were engaged in the Mobile Teams Project, visited families where there was a need for palliative care.
“We have seen such situations that the heart is getting broken. For example, a mother is in the third stage of breast cancer, she has a baby with a cerebral palsy in her hands, and they have no one to go to a drug store or a shop.
Another case – a mother of three children, who name is Olha. She grieved that the average child had never been to the zoo, because the youngest child was severely ill. And then she added that two or three times she had wanted to commit suicide because of such a difficult life“, recalls the pediatrician.
Nataliia Kovalinska, a social worker from the Rivne Legal Aid Center, says that such families lack the help of a psychologist and financial support in the first place.
The situation is very difficult in the family of the 5-year-old Matvii. The boy needs a change of the body position every half an hour.
“Parents suffer greatly. They sleep in turn. They are exhausted. The boy’s mother said she was not sleeping anymore. She knows she needs to wake up.
They have no possibility to hire someone else to help them. The mother is with a child all the time, and the father works, because he need to support a family, in particular to buy probes, medicines, diapers and baby food“, Mrs. Nataliia tells about the realities of the family.
Social workers and human rights activists of the Rivne Legal Aid Center, which started to work this year with the EU support, are currently taking care of the family.
The same branch of support for seriously ill children and their families was opened in Vinnytsia, Sumy, Kharkiv, Dnipro, Mykolaiv and Mukachevo.
Changes must come
A healthcare reform only takes the first steps in this direction.
So, the order of the Ministry of Health No. 504 “On Approval of the Procedure for Provision of Primary Healthcare” entered into force in July 2018 – palliative care is included in the “green list” of the types of healthcare, which costs are to be covered by the state.
According to Oleksandra Bratsiun, Palliative Care Development Adviser of the Ministry of Health, the next step of the state is expected to be radical enough – the current order No. 41 on the organization of provision of palliative care will be changed.
Now it is said that palliative care is provided to patients of all age groups, but there is no indication of children individually.
There is also no reference to the forms of child care, which differs from adult care.
“There will be a separate section titled “Palliative care to children”; it will also contain the forms of care and types of care.
In other words, it will be regulated by the state as a standard“, explains Oleksandra Bratsiun.
The order also provides for the mandatory notification and direction of relatives of a child, who needs palliative care, by social services with a family assistance resource: diapers, antimicrobial mattresses and wheelchairs.
Regarding education in palliative care, the Ministry of Health supports the unified international palliative care curriculum (for adults and children) proposed by the WHO that needs to be adapted and introduced as a compulsory subject in the undergraduate level of education for doctors and nurses.
“It is expected that it will be compulsory course for medical universities and colleges.
There is the first draft of the program. In future, we need to analyze the existing education and find out what steps are needed to be implemented. It will be done during the round table in November“, sums up Oleksandra Bratsiun.
If you need palliative care
For consultation, legal, financial or other support, please contact the following non-governmental or charity organizations:
- Legal Aid Centers for seriously ill children and their parents (Rivne, Vinnytsia, Sumy, Kharkiv, Dnipro, Mykolaiv and Mukachevo)
- Center for Palliative Childcare in Kyiv (telephone (044) 467 80 11)
- Tabletochki Charitable Foundation (telephone 067 464 87 74, 050 210 70 02)
- Charity Foundation for the Care for Children with Oncological Diseases “Crab” (hotline: 0-800-500-137)
- Ukrainian Association of Palliative Care for Children (telephone 093 757 22 70, 067 547 32 55)
- Charitable Organization “Association of Palliative and Hospice Care” (telephone 097 141 74 56)
- Kyv Association of the Ukrainian Samaritan Union (telephone 044 201 35 01, 201 35 02)
- Open Palms Charitable Foundation (telephone 067 628 22 11, 067 5473255)
By Halyna Zhovtko, EUProstir, especially for UP.Zhyttia
The article was originally published on Ukrainska Pravda Zhyttia