The pain of loneliness: how to help palliative care children in boarding schools
Hospice and Palliative Care Day is celebrated worldwide on October 10. A serious, incurable disease is a difficult ordeal for any family, but it is even more difficult for children and young adults who experience illness in boarding schools. This fall in Yekaterinburg, participants of a workshop organized by the Vera Foundation and the Region of Care project of the Popular Front discussed how to build a modern palliative care system in such institutions. Izvestia looked into how the system operates now and what changes are needed first.
Compensate for the deficit
The workshop "Palliative care for children and young adults in boarding schools" gathered 51 specialists from 17 regions of the country in Yekaterinburg at the end of September. The discussion of issues related to the continuous and high-quality support of such children was attended not only by representatives of the charitable sector, but also by the heads and staff of orphanages and doctors.
As a rule, about 10-20% of the total number of children recognized in the region as needing palliative care are in boarding schools, Anastasia Zhdanova, program director of the Region of Care social project of the Popular Front and head of the palliative care monitoring program, told Izvestia. Project staff have been coming to boarding schools since 2022.
— At the same time, children with the most severe health problems usually live in boarding schools. Despite the fact that the word "palliative care" is sometimes perceived as a designation of a very short life expectancy, this is not necessarily the case. Palliative care for a child may be necessary for many years, and the quality of his life depends very much on the availability and continuity of specialized medical care," she said.
Russian legislation in the field of palliative care has undergone a serious evolution in recent years and now represents a detailed regulatory framework, which also provides for the interaction of specialized palliative services with residential institutions, Evgenia Gabova, director of the Arzamas Home of Social Services for Children, Mayak, told Izvestia. Therefore, the main task, she is sure, is not to develop separate protocols directly for the DDI.
— The problem is different: specialized palliative care in the regions is very unevenly developed. Where there is a strong field service, she comes to the boarding school and works with the child in much the same way as at home. Where there is no such service or it is formal, the boarding school is forced to compensate for this deficit itself," the specialist said.
Practical skills
In such cases, the provision of qualified palliative care depends on the training of DDI staff, explained Ekaterina Tarakanova, head of the charitable Foundation for the development of palliative care "Children's Palliative Care". To do this, they need to have the skills to care for, feed, move around, and use medical equipment.
— However, in reality, there are very few trained specialists in children's boarding schools who are able to provide qualified specialized palliative care to children. This is due to the fact that there is practically no regular training on the specifics of working with children in need of palliative care for the staff of the regional children's educational institutions," she shared.
There are separate courses on nursing and basic palliative care, but they do not cover all the specifics when working with a child with severe and multiple developmental disabilities.
— The staff lacks practical skills. They need not only general lectures, but also individualized algorithms for a specific child and support on the ground," the editorial interlocutor emphasized.
In particular, Children's Palliative Care is trying to solve this problem through peer—to-peer training, when specialists from social institutions who already have extensive practical experience in caring for children and young adults in need of palliative care come to other boarding schools to inspect them on the spot and demonstrate important practical skills. learn skills and sort out complex cases. After the face-to-face stage, the team continues to accompany the institution online.
Other problems faced by DDI employees include staff shortages, heavy workload, and shift work, which makes it difficult for the entire team to train at once. There is also resistance to change, especially if new ways of care require abandoning familiar practices, Ekaterina Tarakanova noted.
In addition, boarding schools usually do not have a 24-hour medical service, so even fairly simple manipulations require going to the hospital.
— A very illustrative example is the emergency situation with gastrostomy. The family of a domestic child usually has a spare gastrostomy and understands what to do: you can replace it yourself or go to the hospital and return home. There are no spare gastrostomes in the DDI, and employees are not always ready to solve such situations on their own due to the issue of responsibility," said Olga Shelest, executive director of the Samara charitable foundation Evita.
In this case, the only route for the ward from the DDI is an ambulance and hospitalization. The same thing happens when the temperature rises: a pediatrician can be called to a home child and treated at home, and they are often immediately hospitalized from boarding school, the expert explained.
Employees of orphanages, faced with a difficult situation, often find themselves on their own, experts interviewed by Izvestia agree.
— Each specialist has his own area of responsibility, but when a child's individual problem arises — for example, it is impossible to change clothes properly due to severe spasticity, a person simply has no one to turn to for advice, - Olga Shelest explained.
Far and difficult
Often, those who live in DDI actually drop out of the polyclinic system, says Pavel Burykin, head of case support (children) at the Vera Hospice Charity Foundation, pediatrician at the Department of On-site Palliative Care for Children No. 9 at the DZM Palliative Care Center.
— It is believed that the institution has its own doctor and he will sort everything out. But often this is a psychiatrist, sometimes there is a pediatrician, and this is not enough for children with complex health problems," the expert said.
According to him, medical examinations in boarding schools are often carried out formally, and the consequences can be very serious. For example, a visual impairment that is not detected in time can deprive a child of the opportunity to study, and orthopedic problems missed by doctors can result in secondary skeletal changes that lead to contracture, dislocations, chronic pain and loss of motor skills.
"As a result, a child with relatively minor motor impairments may become bedridden and need much more complex medical care," the doctor explained.
At the same time, due to the lack of necessary medical staff in the hospital, children can be sent to the hospital even with a slight runny nose or fever, despite the fact that this threatens the child with stress and nosocomial infections, the source said.
At the same time, planned hospitalization is a separate and often quite complicated process when it comes to a child from a boarding school with palliative status, Anastasia Zhdanova explained.
— Boarding school doctors, even if they are qualified, have limited opportunities to help the child, due to the fact that they are in the social protection system. For example, they cannot independently send him to a planned hospitalization the way a polyclinic doctor does," she said.
In addition, a child from a boarding school often needs to solve several problems at once during one hospitalization: dental, neurological or surgical. But it is impossible to do this within the same bed, because these are different medical services. As a result, the DDI staff needs to organize several planned hospitalizations, for each of which it is necessary to undergo a multi-stage procedure.
— It is necessary to collect tests, undergo functional examinations, find a chaperone, and take the child. A child can get sick, tests become invalid, and everything has to start over to receive every medical service for a child with multiple developmental disabilities," Anastasia Zhdanova said.
To make matters worse, according to established tradition, most of these institutions are located far from regional centers. Most of the experts interviewed by Izvestia admit that they are often hundreds of kilometers away from cities.
— It turns out to be a paradox: the heaviest children often find themselves farthest from the centers of medical competence. Formally, state guarantees, a special procedure for medical examinations, and access to medical care are provided for children living in boarding schools. But it is much more difficult to implement these guarantees in a remote institution," Anastasia Zhdanova explained.
Find those in need
At the same time, the visits of the palliative service to the boarding school themselves also turn out to be a formality in some cases.
— In our practice, a doctor can come, examine a child, measure the main indicators, but at the same time not assess, for example, the condition of the gastrostoma, nutritional status or the dynamics of the neurological condition. That is, the very fact of departure does not mean that the child receives full—fledged supervision," Olga Shelest said.
Another problem is that not all children who need palliative care are recognized as such.
"There are often children in boarding schools who need palliative care, but they do not have an official document — the decision of the medical commission, because local specialists, even from specialized palliative services, sometimes simply do not understand the criteria of need," explained Evgenia Gabova.
Determining indications for palliative care is often difficult, Ekaterina Tarakanova confirmed.
— A large number of children with severe non-oncological pathology are concentrated in institutions and it is extremely difficult for employees to identify criteria for palliative care. We see both an overestimation and an underestimation of the number of children who really need help," she noted.
This means that employees sometimes lack an understanding of who needs to be connected to palliative care and at what point, the experts explained.
In search of a family
Boarding schools with teams trained to provide full-fledged care to palliative care children can provide pupils with a huge financial and professional resource, Evgenia Gabova confirmed. However, it still won't be enough.
— We can provide the child with good medical care, equipment, rehabilitation, a teacher, a psychologist, play therapy, volunteers, and the opportunity to go out into the city. We do this at the Lighthouse. But there is one thing that boarding school cannot provide — a mother or another truly significant adult," she emphasized.
Ideally, a child with this status should not be enrolled in the DDI, Olga Shelest admitted. At the same time, parents often abandon seriously ill children not because they do not want to raise them, but because they are afraid of not being able to cope physically or financially.
— There is no one to leave the child, it is difficult to organize care, you need to work, you need medical specialists and rehabilitation, — the interlocutor of the publication listed. — Therefore, the care system should be built around the family — with social nanny, respite, medical, psychological and legal support.
Palliative care is not limited to pain relief, nutrition and care, it also involves living close to a loved one, agrees Evgenia Gabova. Therefore, ideally, support for such children should consist of daily palliative care visits, as well as visits to the hospice to select therapy, nutrition, or to give parents a social break.
— Advanced palliative care is very good at preventing orphanhood. The family begins to receive high—quality comprehensive care, and children do not end up in boarding schools," the specialist expressed confidence.
And for children who are already in the system, it is important not to interrupt the search for a family — try to build relationships with relatives and loved ones, she recommended.
Own coordinator and access to medical care
If we talk about the development of a system of care for palliative care children in boarding schools, the first thing that Izvestia's interlocutors noticed was the fragmentation of existing assistance mechanisms and the lack of stable interaction between representatives of different organizations that ensure the interests of a child with palliative status. These are primarily social and palliative services, as well as doctors.
In an ideal system, a child outside of boarding school should have a whole team of specialists, including a pediatrician, neurologist, surgeon, rehabilitologists and palliative care specialists with the ability to connect nutritionists, occupational therapist or other staff, Olga Shelest is sure. All of them should interact with the DDI on a regular basis.
A separate social coordinator is needed inside the institution, who will act as a child's advocate, thoroughly know his needs and make decisions on each specific situation: from pain to problems with access to medical care or a broken wheelchair, and decide which specialist to contact with this problem, the specialist explained. Such a person could in many ways connect the disparate resources that exist today.
— Formally, the rights of children living in the DDI are the same as those of children living at home. But in practice, access to medical care for a child in a boarding school is more difficult. In the case of a domestic child, the mother calls a doctor, knows who to contact, can quickly respond to a change in condition, and insist on an examination. A child in the DDI often does not have such a personal coordinator," the source complained.
In addition, it is important to resolve the issue of geographical availability of medical care — children in need of palliative care, if they are in a residential care system, should be as close as possible to the centers of medical competence, Anastasia Zhdanova urged.
— The heavier the child is, the closer he should be to specialists with high awareness and experience in dealing with complex cases, — concluded the specialist.
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