Continuing its mission to advance palliative care, PACED Foundation reaffirms its commitment to fostering international partnerships within its active regions.
On October 17, 2023, a crucial webinar explored paediatric palliative care in Belarus. This session engaged with the Belarusian Children's Hospice team and the Director of the Republican Clinical Center for Paediatric Palliative Care.
We are releasing an in-depth summary of the talk and the presentation, along with video links in English and Russian.
Experts:
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
For the first time, the idea of palliative care and hospices emerged in our country at the oncology and haematology centre within the First City Hospital. In 1994, the Belarusian Children's Hospice was registered there, although it wasn't exclusively for children at that time. Our assistance could cover children and adults, with the support measures implemented solely for patients with oncological diagnoses. At that time, we had four volunteers working voluntarily. The 90s were a challenging period, and we operated as volunteers initially, later receiving support from Western programs. Only one direction was implemented - home care. I spent four months in America studying palliative care, bringing back knowledge that formed the basis for implementing the American model in our service. After a year of operation, we drew several essential conclusions - it wasn't sufficient to assist only children with oncological diagnoses. There was a significant number of patients with other illnesses requiring our support. Previously, such children's diverse symptoms were hidden behind the abbreviation CP (Cerebral Palsy). When we started working with these patients, we immediately understood that home care was insufficient; they needed socialization. I will never forget a girl who had never ridden a bus in her 15 years - we took her on a bus ride around the city, bringing her great joy. This led to the creation of our second program - the day centre. We were able to implement it with the help of Western grants.
There were two stationary wards that no one wanted to go to. Throughout their operation, only two orphaned children ended up there. Mothers were unwilling to bring their children to these stationary wards, but the day centre was thriving. We continued to grow, and in 2001, with the help of Western funding, we acquired a new building. We made many improvements, and now we have a day centre and five beds in the ward, which we actively use to assist oncology patients and provide parents with social relief. Much work had to be done with the parents - they were reluctant to leave their children, considering it akin to sending them to an "internat" (boarding school), refusing. However, we explained that it was a few weeks and an opportunity for them to recharge. The Parent Club was established, featuring informal meetings where we invited specialists, artists, and priests. In the new building, we initiated a grief program - writing cards with parents to their departed children and providing support. The volunteer program also evolved, and it became evident that a volunteer coordinator was needed. In 2000, we acquired a rural house 100 kilometres from Minsk with 2.5 hectares of land. Initially intended for siblings, it now hosts families and children with disabilities. At that time, we focused heavily on an educational program, as finding the necessary information was challenging. Significant efforts were also made to translate specialized literature. There is no longer a need for this - the Russian Palliative Fund is doing extensive work on translating literature, and we use it.
At that time, Belarus had seven public hospices - almost one in each region. These institutions were not legally affiliated with us, but we found sponsors for them and tried to provide support. The involvement of state organizations during that period was minimal. We understood the importance of integrating pediatric palliative care into the country's healthcare structure and system. To achieve this, we closely collaborated with the Minsk City Health Department and the Ministry of Health. After completing an internship at the St. Christopher Hospice, invited by Dr. Cecily Saunders, we initiated the first course in palliative medicine in Belarus and Russia, based at the Belarusian State Medical University. The next step was to create the first regulatory document on palliative medicine within Belarus's healthcare system. A doctor from our hospice became the country's first external specialist in pediatric palliative medicine for the Ministry of Health. The opening of the first palliative care department in Gomel was not a government initiative funded by foreign sources. However, it was established within a state polyclinic. Later 2011, a palliative care unit was opened in Minsk at the Children's Home, with more active state involvement. I want to emphasize the significance of developing and implementing clinical protocols in 2013 and the initiation of a national registry for those in need of palliative care. By 2011, we realized the need to expand and involve the government more in pediatric palliative medicine. Coincidentally, the president allocated land to construct a new building during this period. This marked the beginning of extensive work - we developed the project, took our architect to England for consultations with specialists, and gathered funds worldwide for construction. I will never forget a grandmother from Vitebsk who sent us 30 rubles from every pension and a person who sent money while in prison. The government also provided support at various levels, and in 2016, the construction was completed. From the start, we aimed to create a national palliative care centre. At that time, only two public palliative institutions remained in the country - ours and one in Mogilev. As soon as we started the new centre, the structure of palliative care provision changed, with the Ministry of Health becoming the leading player, and we shifted slightly to the side - with a crucial function but somewhat on the sidelines. Currently, we have 32 staff members and 13 contractors. We moved away from direct medical care; we don't have a hospital - our doctors provide consultative support for the state's implementation of medical care for palliative patients. We focus on regions - in Minsk, the palliative care unit manages the situation effectively. Currently, we focus on training caregivers and nannies; we conduct educational events for them. We also have a psychological support program, rehabilitation is progressing, and small thematic programs are running. The volunteer program is growing, playing a crucial role in our operations. A new direction is assisting patients up to 39 years old - challenging but vital. Pediatric care works well in Belarus; the challenge lies in supporting adult patients and transitioning from paediatrics. Our direction aims to address this issue.
Irina Zueva, Nurse at the Belarusian Children's Hospice
By education, I am a paramedic and have been working in hospice care for 12 years. My role involves providing palliative care to children at their homes. Currently, we focus on 50 families, with 9 of them in Minsk and the rest in various regions. Emphasis is placed on regional areas, as the situation with palliative care in Minsk is significantly better.
The palliative care we offer is planned; we discuss the needs with families in advance, select the necessary supplies, and then go out with a driver. The hospice has several nurses who also serve a coordination function. During the initial visit, the nurses develop a plan of necessary activities, considering the patient's individual needs, including the number of home visits, assistance from a psychologist, an habilitologist, and consultations with a doctor. Nurses are also involved in an educational program for parents. After discharge from the hospital, parents should not face the complexities of care alone. We train them in caring for tracheostomies and gastrostomies, wound care, and feeding through a tube. The hospice provides families with the necessary equipment and offers training. Consultations with a doctor can be organized if needed.
Nurses maintain constant close contact with families and, of course, must possess skills in psychological support. Pre-hospital care is also among the necessary skills of a nurse. During each visit, we conduct visual examinations, monitor dynamics, and discuss the prospects and potential needs of the child with the parents. Support is available round the clock; parents can ask questions anytime. We also accompany the process of children's dying. In my practice, there was a case where I supported the mother of a dying boy over the phone, provided psychological support, explained what was happening with the child, and walked with her through the entire journey until the end.
Katsiaryna Sidaruk, Psychologist at the NGO "Belarusian Children's Hospice
Psychological support in the hospice is provided in three main directions: working with parents, children and their siblings, and young adults. Each direction has its specificity. I oversee the third direction - working with young adults with disabilities and severe conditions aged 24 to 39. Our patients suffer from either congenital diseases or have consequences of injuries leading to limitations in their abilities. When working with adults, it is crucial to alleviate aggression, discuss the situation with the patient or the parent of an ill child, and understand it; it is essential to discuss with the surroundings the motives behind the emerging aggression, explain methods of interacting with someone in such an acute state. Many of our adult beneficiaries have a reduced level of intellect, making it difficult for them to comprehend what is happening to them and understand existing limitations - we work with such patients.
An essential part of our work is supporting parents whose children are dying - in moments of acute grief, a person may feel that they are not needed, but this is not true. It is essential to be there, allowing parents to experience their grief, go through all its stages, and feel the presence of someone sympathetic and empathetic. Another aspect of our work is with young people in group settings. Typically, participants in the program include patients with cerebral palsy and other diseases that do not critically limit mobility.
We have not been conducting offline meetings recently due to logistical reasons - even with transportation available, loading the patients and transporting them to the meeting place can be challenging. There are challenges in an online format - only some of our beneficiaries can perceive communication through communication and video. I want to highlight the sensory room, which has become a phenomenon for patients of any age. Through sensory stimulation, we achieve relaxation and a sense of joy and happiness for our beneficiaries. It is crucial to tailor stimulation methods individually, so our specialists collaborate closely as a fully integrated team.
Zlat Kizin, Habilitologist at the Belarusian Children's Hospice
I have been working as an habilitologist in the hospice for three years. Let me begin by defining the term "habilitologist." It is widely known that rehabilitation is the restoration of lost functions, and habilitation works with cases where restoring a function to normalcy is impossible. The essence of habilitation lies in adapting the existing capabilities of a child to the surrounding world using technical means and teaching interaction. It is crucial to involve the child as much as possible in manipulations. Only through interaction during sessions can a child develop skills.
At our Centre, we train specialists from different regions of Belarus. We also travel with educational programs to regions and conduct public seminars. This helps bridge the gap in the capabilities of assisting patients in Minsk, where the level is relatively high, and in other parts of the country.
Assistance in selecting technical devices, including lifts, verticalizes, organising the life activities of severely ill patients at home, and, recently, orthoses and eye-tracking devices for computer control through eye movements, is highly sought. We also educate parents on the specifics of equipment usage. Habilitation activities take time, and thanks to McDonald's, we have several residential rooms where parents accompanying their children can stay.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical
We have been operating since 2016 and strive to incorporate all modern principles and approaches in providing palliative care to children. Firstly, we have expanded palliative care, offering it to all children immediately after diagnosis. We continue this care regardless of whether the child is undergoing treatment and the interventions may be directed towards overcoming illnesses.
The effectiveness of assisting children with severe illnesses is achievable through timely identification of health condition disruptions, intellectual diagnostics, the development of an individual rehabilitation program, and support for the child and their family. Ensuring the accessibility, continuity, and staged implementation of activities aimed at maintaining children's functions, skills, and social possibilities is crucial. Most importantly, a timely transition to palliative care can ensure an appropriate quality of life for the child and their family.
In 2016, changes were made to regulatory acts, allowing children in need of prolonged respiratory support to receive ventilators funded by the state budget. In 2017, a new resolution from the Ministry of Health was issued, regulating the provision of assistance to children in childcare facilities, including palliative care and support for children requiring prolonged respiratory support. Such children can receive assistance in childcare facilities until the age of 18.
In 2019, the regulatory document defining the procedure for providing palliative medical care to children in the Republic of Belarus was updated. This document incorporates all modern approaches to delivering palliative care to children and considers changes in legislation.
In 2020, the approval of the republican register of Children in Need of Palliative Care, which has been operational since 2015, was announced. Responsible individuals in each region are designated for inputting information and maintaining the registry. Finally, this year, new clinical protocols for providing palliative medical care to children have been developed and approved.
A significant amount of progress has been made, and I would like to highlight the results of our work. We have established and organised a multi-level organisational structure for providing palliative care to children, including a republican, regional, and district level. This structure encompasses the efforts of state institutions, the interaction between the public and private sectors, as well as interdepartmental cooperation involving the Ministry of Health, the Ministry of Labor and Social Protection (responsible for residential care facilities with palliative departments and centres for social services), and the Ministry of Education (overseeing corrective and developmental learning centres where individual education programs for children are determined).
A comprehensive package of regulatory documents has been developed, regulating the provision of assistance in both outpatient and inpatient settings and the provision of artificial lung ventilation. Children can receive medications, technical means of social rehabilitation, and necessary medical products—such as ventilators and home suction devices—on preferential terms. Additionally, activities for habilitation and rehabilitation are available in both inpatient and outpatient settings.
A register of children in need of palliative care is in operation. Unified report forms, which can be generated automatically, have been developed. The register contains personalised data for each patient under palliative care, including relevant information on the course of the illness, the implementation of rehabilitation and habilitation activities, and the provision of technical means of social rehabilitation and medical devices.
The register primarily facilitates planning, including long-term planning, for developing assistance throughout the Republic and in each specific region. It aids in providing organisational and methodological support and enhances collaboration among specialists. Over the seven years of our centre's operation, the number of children under palliative care has increased by 1.7 times. The majority of patients are school-aged children with nervous system disorders.
Adolescents constitute a significant portion of the patients, and special attention is given to assisting them in preparing for the transition to adult services, which primarily focuses on helping oncology patients and providing hospice care. The quality of pediatric palliative care has improved, with more children surviving to adulthood, leading to an increasing number of adult service encounters with such patients.
The priority of palliative care in Belarus is assisting at home. Over 80% of patients receive assistance at home, in palliative units of residential care institutions, and in childcare facilities integrated into the healthcare system. Of these, 7% are in childcare facilities, and 10.5% are in social protection institutions—specifically, residential care institutions for disabled children—where palliative beds and units have been established. Currently, 135 children in the Republic are on ventilators, with over 70% receiving support at home and 16% receiving assistance in palliative units within childcare facilities.
During the operation of our Centre, the number of patients receiving non-invasive respiratory support has increased. Currently, this accounts for 30% of all children receiving palliative care at home. In contemporary conditions, we provide high-tech assistance at the intersection of many professions, requiring knowledge in various medical fields and a sufficient level of psychological preparedness. It involves teamwork with specialists from different areas. In our centre, we apply a team-based approach and strive to implement the same approach in the regions.
The Centre is the main institution in the Republic that formulates policies and outlines the main directions for improving the provision of palliative care to children in the regions. We are a unique healthcare institution, distinct from typical healthcare facilities in terms of function within the structure. Our work priority is a team-based and interdisciplinary approach.
The Centre operates both inpatient and outpatient departments, where patients receive habilitation in day hospital conditions. Additionally, there is an outreach service. Regardless of the reason for hospitalisation, each patient is worked with by a team of specialists, including doctors, nurses, psychologists, special education teachers, therapists, caregivers, and a spiritual advisor.
The Centre assesses the effective status and implements a comprehensive set of habilitation and rehabilitation activities. This comprehensive approach allows us to address the maximum needs of the patient and their surroundings and provide recommendations for local specialists to continue a unified approach to patient management.
If necessary, dynamic observation can be continued by the outreach service, which has the ability to travel to any region of the Republic to provide both consultative and methodological assistance. In case of need, the Centre can also provide patient care throughout the Republic.
A distinctive feature of our Centre is that we genuinely provide palliative care, which includes medical, psychological, and social support. For over five years, the Centre has successfully implemented a program to assist patients with neuromuscular diseases—primarily spinal muscular atrophy and Duchenne muscular dystrophy. Patients undergo the entire range of diagnostic measures necessary to assess the dynamic state of the disease and the complete set of required habilitation and rehabilitation activities.
Such support has become essential as our patients have access to pathogenetic therapy. The Centre implements and recommends adopting modern techniques and approaches to providing palliative care in local organisations.
We conduct diagnostics of nutritional status using bioimpedance, individually tailor enteral nutrition and its administration method, and diagnose for the earliest possible initiation of non-invasive ventilation (NIV). We can perform comprehensive dynamic monitoring. Physical therapists provide individual selection and adaptation of technical aids, utilising adaptive feeding techniques and alternative communication methods. Most importantly, we stay connected with our patients using various online interaction methods.
To enhance our work, we have identified key areas of focus. Primarily, attention is needed for approaches to organising palliative care in regions, personnel training in pediatric palliative care services, and ensuring continuity with adult services. The Centre also monitors the provision of essential medications and invasive access to them. Clinical protocols prioritise invasive access for administering medications to our patients.
We also ensure the provision and monitoring of social rehabilitation technical aids and organise and oversee nutritional support. Another focus is informing healthcare professionals, interdisciplinary specialists, and the public about pediatric palliative care services. In regions, we advocate for establishing rapid response services based in children's homes to develop the situation in pediatric palliative care.
Our country has seven regions - six regions and the capital city, Minsk. In three regions and Minsk, regional pediatric palliative care centres based in children's homes with outreach services are already operational. Additionally, 12 offices across the Republic provide patient patronage and can make home visits. The latest regulatory document defining service operations has introduced staffing standards, providing the opportunity to present all necessary positions at the local level to organise assistance.
For further development of pediatric palliative care, we plan to open ten more district-level offices in various regions of the Republic. The foundation of palliative care lies in experienced professionals: paediatricians, district paediatricians, and general practitioners. It is crucial to focus on the principle of teamwork. Unfortunately, not everyone in the public sector understands or is fully ready to adopt this concept.
When preparing to open an office, we emphasise team creation - a doctor, nurse, psychologist, special education teacher, and other specialists are required for office work. In regions, doctors often believe that they don't need to know about palliative care, as they have been district paediatricians for ten years and haven't seen a single such child. This is fundamentally incorrect.
In 2014, the WHO drew attention to migrating specialists from various medical fields into the palliative care system. In 2018, the WHO issued the "Integration of Palliative Care into Pediatric Practice" guidance, which was translated into Russian in 2020. Following the WHO principles, we understand the need for continuous practice and personnel training, and we pay significant attention to this aspect.
Colleagues have mentioned that palliative medicine courses are taught in the general medical practice department. Our Centre's doctors also teach this course. Moreover, we serve as the clinical base for the paediatrics department, conducting several days of training on each cycle of doctors' professional development at our facility. Since last year, the paediatrics department has run a two-week course on the interdisciplinary approach to managing critically ill children and the basics of pediatric palliative care.
In addition, we actively collaborate with the sports medicine and physiotherapy department for professional development and retraining of doctors, with the University of Physical Culture, which trains instructor-methodologists, and with the Belarusian State Medical College, where middle medical personnel and physiotherapy instructors undergo professional development. There is also a unique program on ecotherapy in rehabilitation in pediatric palliative care.
We strive to share our knowledge with specialists from the regions who come for professional development, encouraging them to apply the acquired knowledge in practice and understand the nature of palliative children and how to work with such severely ill children. Additionally, we annually conduct scientific-practical republican conferences, including international participation, to address issues related to pediatric palliative care.
We concluded that the diploma program needs more instructional hours regarding postgraduate training. We approached the Belarusian State Medical University to explore possibly increasing the pediatric palliative care course for the pediatric faculty. We put effort into developing and implementing educational programs on pediatric palliative care not only for doctors and middle medical personnel but also for related discipline specialists - clinical psychologists, social workers, educators - those specialists who work with our children. Another essential task is transitioning children to adult services, which we are currently actively addressing.
Question
How has the registry for pediatric palliative care evolved, what data is collected, how is it utilised, are you satisfied with its current organisation and appearance, and what improvements can be made?
Answers
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
It's challenging to answer briefly - the registry was initially one, and then it became the second. Overall, it's a topic worthy of a separate meeting. Initially, we created it as part of the UNICEF project, and it was elementary. The main goal was to make it easy for people to access. It was primarily intended for research purposes. Later, the Centre modernised it for its own needs. Please visit the palliative centre's website and inquire with them; they will gladly provide more information.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
The registry includes patient identification data for which we obtain consent, all within the legislation framework. We enter data - the history of the child's illness, all data from birth. We also collect information about the child's parents, probands, and the reason for and criteria for placing the child under palliative observation. The registry can include data on the child's hospitalisation, the implementation of various activities - rehabilitative, rehabilitative - what the child is provided with, what technical rehabilitation means, and what medical devices and consumables. Furthermore, we can add this information to the registry if the child receives treatment or consultation. This allows us to obtain statistical information and clinical data, track the dynamics of the disease, and continuously improve the registry. For example, we add labels to avoid missing diagnosis review deadlines or preparing documents for transferring patients to adult services as they approach adulthood. Notably, since 2020, there is a regulatory framework regulating the registry's operation, allowing each region to have a specialist responsible for its maintenance.
Question
Is sharing your model with colleagues from other countries possible and permitted?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
We can show how it works, but all the information it contains is medical and confidential. We can demonstrate its operation, what is entered into it, and the principles guiding its modernisation. We initially adapted it to the state system to obtain the maximum amount of data, track dynamics, make forecasts, build plans, review the situation in each region, and adjust as needed. The registry method indeed allows tracking the entire sphere of pediatric palliative care.
Question
Is the registry integrated into any standard healthcare information system?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Currently, the registry exists separately. We also have separate cancer and diabetes registries - all operate independently. In the Republic, an electronic healthcare platform is being developed. When it becomes operational, all these registries may be integrated into it.
Question
Do patients who are unable to come to the centre or hospice receive remote care?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Do all patients have the possibility to come to the Centre as a state institution? Sometimes circumstances, such as transportation difficulties or parental reluctance, may lead our specialists to provide care at the child's location. However, we can generally hospitalise a child from any region in the Centre. The decision is made based on the specific patient's needs—modern ambulances allow the transportation of even very ill children, but it is not always necessary. If a child is in the terminal stage, there is no point in transporting them hundreds of kilometres.
Nevertheless, we approach each case individually, striving to provide maximum assistance and support. We conduct consultations, develop strategies, and determine appropriate measures. Collaboration with the 'Belarusian Children's Hospice' is crucial. In cases where the Centre faces limitations due to its institutional status, we involve our colleagues. This collaboration also helps us transfer children to adult services. If we identify the need for additional assistance, we share a child with the hospice, where they can be provided with technical means and enteral nutrition if necessary. The replacement of gastrostomy and tracheostomy in children is regulated legislatively and is carried out in local medical institutions. However, for adult patients, this situation remains unresolved. In such cases, hospice programs are instrumental. This is a significant issue that needs to be addressed, as we transfer 300-330 children to adult services every year.
Question
What forms of pediatric analgesic medications, both non-opioid and opioid, are currently available in Belarus?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Non-opioid medications include ibuprofen and nonsteroidal anti-inflammatory drugs, available in both liquid and suppository forms. As for opioid medications, there is an official liquid form called Oramorph, and we have recently procured morphine in ampoules from the Moscow Endocrine Plant. There are dosage-related questions regarding this form, but it is available. Additionally, we use sedative medications, such as Sibazon (Diazepam), in rectal tubes. For oncological children in need of pain relief, there are extended-release forms of morphine and Fentanyl, though these are intended for older children. In the Republic, there is the capability to manufacture pharmacy formulations of morphine in liquid form for oral intake, as a last resort upon a doctor's prescription. If, for any reason, other liquid forms of analgesics are unavailable, a solution can be prepared at the pharmacy based on the doctor's prescription. The Ministry of Health has assigned pharmacies to each region to ensure the provision of medications for the residents. We are moving away from the practice of administering induction analgesia through subcutaneous and intramuscular injections. The pediatric oncohematology Center covers all children with oncohematological diseases, and we closely collaborate with them. When children in the terminal stage are transferred to our Center, we develop a pain management plan and monitor the implementation of our recommendations in the regions. If necessary, we send doctors to the regions and liaise with pharmacists to ensure the child receives the required medications.
Question
How is the staffing issue addressed? Where and how do you recruit employees who share the philosophy and values of palliative care? What led you to work in palliative care?
Answer
Katsiaryna Sidaruk, Psychologist at the NGO "Belarusian Children's Hospice
As a rule, people who enter palliative care know what this field entails and feel the need to work in a system of helping others. I previously worked in a crisis centre for women with children, and transitioning to palliative care became a logical continuation for me. Over the course of a year, two of my relatives passed away with the help of palliative care, and I clearly understood that the relatives of patients in such situations cannot be left alone. There must be someone they can lean on and rely on for support.
Zlat Kizin, Habilitologist at the Belarusian Children's Hospice
My initial education was as a paramedic obstetrician. Later, I obtained a higher education in rehabilitation. I have always been involved in assisting everyone in overcoming challenges.
Irina Zueva, Nurse at the Belarusian Children's Hospice
I entered the field of palliative care 12 years ago - I ended up in a hospice by chance four years before I started working there. I was sent to training courses. When I understood what hospice care was and saw the memorial wall for children, the thought struck me - I will work here. And then, for four years, I worked towards that goal. The journey to professionalism was very long; I internalised everything, and at one point, it seemed like I wouldn't make it. At a particular moment, after a challenging visit, I thought - if I dedicate my life, will it save the child? I understood that it wouldn't. But my knowledge and skills, readiness, and ability to help and support the child and his mother can bring relief. I am constantly learning - from parents, from colleagues - I know everywhere. How to interact, how not to fall apart myself. And now, I see how valuable my assistance is. Dealing with death is particularly challenging - it is a personal matter for everyone.
Question
Question for the leaders - how do you find employees for your team?
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
We don't stand out from the general trend - we also have staffing issues. Previously, people used to come from courses, but now it's a significant problem for us. Firstly, we are a non-governmental organisation, which means employees need to accrue experience in a budgetary organisation. Medical experience counts, but budgetary expertise does not. Those who have decided never to work in a government structure again may come to us. Secondly, there needs to be more motivation. Young nurses come to us, and I see that they are not interested or motivated. We may need to wait until the new generation grows up. They will be more enthusiastic. For example, we have a problem with volunteers, and this year, two boys aged 15-16 joined us. These two boys impressed me with their willingness to help patients. I hope they will grow up and come to us. It's easier to find personnel in government structures, but it's much more challenging for us in a public organisation. Another critical factor is salary.
Starting this year, all our Western projects are ending, and fundraising will only be in Belarus. We currently have 32 employees in the hospice, and I need to find money to pay their salaries. Sometimes, you have to take a breath. It's like in resuscitation - inhale, exhale, exhale, exhale. Right now, we're exhaling, and we have to accept that. There are situations where we need help to do something. We can't force someone to be a good nurse in palliative care; we can't make a doctor come and say, 'I'm ready.' We can only wait patiently - like titration: drop by drop. Doctors come to the Centre for practice; they come to us. I don't know if they will return, but some might. You have to know how to wait. It's challenging for me, but I'm an optimist. After the exhalation, there will definitely be an inhalation.
Question
Tell us about how the work with volunteers is organized in the hospice: who trains them and coordinates their activities?
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
The best example of organizing work with volunteers is the Polish experience. In 1997-98, I had the opportunity to study it, which was very useful. Our volunteer program has been in place for a long time and requires strict supervision. With each volunteer, we sign a contract that regulates the number of hours worked. Volunteer work in the hospice added positives to our volunteers' resumes when applying for jobs in European countries. And it was essential for us that they fulfil their commitments before receiving a document confirming their work. We have a volunteer club that meets in full once a month. Different areas of activity are covered; for example, a volunteer oversees the transportation history. Currently, it is Yandex.Taxi, which provides five free trips per month for our families to any city in Belarus. All volunteers must take courses and receive a "diploma," in which we write how many hours they studied with a psychologist, how many learned skills for patient transfer, and how much knowledge they acquired from attendants. Experience shows that out of 10 willing to sign up, only one will make it to volunteer work, which is a good result. Of course, we have those who volunteer for a lifetime. There is also an exciting trend - volunteers are getting younger. Usually, 20-22-year-olds came to us, but this year, we took a risk and accepted 15-16-year-old guys, and the experience turned out to be very positive. We also have a program called "Dreams Come True," within which volunteers fulfil the wishes of oncology children - ride a horse, visit certain places - but all this happens under our control, as the responsibility lies with the hospice.
Question
Do state institutions find volunteers for work?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
The Centre's outpatient department specialists, such as psychologists and educators, engage volunteers in implementing various activities. We work with our patients at the Centre itself and organize socio-cultural events for them on a volunteer basis - musicians and artists come, for instance. Some volunteers assist in acquiring stationery and other necessary items. We do not involve volunteers in caring for children; the Centre's staff handles these tasks.
Question
Tell us about your plans and projects that you plan to implement.
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
I am a realist, and my main plan is to survive. I am a bit encapsulated at the moment, but living without plans is impossible—if you don't plan, you don't progress. The first thing we are doing is developing rehabilitation, which is highly in demand. We started with a pool history—we want to do aquatic rehabilitation. The second is the creation of a Center for Young Adults—a transitional bridge for patients. We are actively working with adult palliative care services, which, unfortunately, are more focused on oncology. However, we have many non-oncological diseases in young adults. We want to create a separate program, but it requires funding and training. Working with children is very different from working with adult patients. Thirdly, it's an educational project for all doctors, psychologists, and territorial centres. We want to explain palliative care—provide essential knowledge, and inform clearly. In general, it is necessary to report the entire society. For example, in one city, we managed to build a ramp in an apartment, but a neighbour came out and protested, lying down to block the construction. She said, 'Disabled people will not drive under my windows.' Later, we managed to find out the reason for such a strong reaction—her mother was dying painfully, and she no longer wanted to see pain and suffering. In the end, she agreed, but it took a long time. Society needs education; it is crucial.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
First and foremost, it's the development of palliative care at the grassroots level and the opening of consultation rooms. Of course, there's the educational program that Anna Georgievna mentioned. This year, we started a palliative patient school covering three regions. We plan to make some changes and adapt the format. These are our plans.
You can watch the video recording in English and Russian on our YouTube channel.
The summary in Russian is available via the link.
On October 17, 2023, a crucial webinar explored paediatric palliative care in Belarus. This session engaged with the Belarusian Children's Hospice team and the Director of the Republican Clinical Center for Paediatric Palliative Care.
We are releasing an in-depth summary of the talk and the presentation, along with video links in English and Russian.
Experts:
- Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
- Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
- Zlat Kizin, Habilitologist at the Belarusian Children's Hospice
- Katsiaryna Sidaruk, Psychologist at the NGO "Belarusian Children's Hospice
- Irina Zueva, Nurse at the Belarusian Children's Hospice
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
For the first time, the idea of palliative care and hospices emerged in our country at the oncology and haematology centre within the First City Hospital. In 1994, the Belarusian Children's Hospice was registered there, although it wasn't exclusively for children at that time. Our assistance could cover children and adults, with the support measures implemented solely for patients with oncological diagnoses. At that time, we had four volunteers working voluntarily. The 90s were a challenging period, and we operated as volunteers initially, later receiving support from Western programs. Only one direction was implemented - home care. I spent four months in America studying palliative care, bringing back knowledge that formed the basis for implementing the American model in our service. After a year of operation, we drew several essential conclusions - it wasn't sufficient to assist only children with oncological diagnoses. There was a significant number of patients with other illnesses requiring our support. Previously, such children's diverse symptoms were hidden behind the abbreviation CP (Cerebral Palsy). When we started working with these patients, we immediately understood that home care was insufficient; they needed socialization. I will never forget a girl who had never ridden a bus in her 15 years - we took her on a bus ride around the city, bringing her great joy. This led to the creation of our second program - the day centre. We were able to implement it with the help of Western grants.
There were two stationary wards that no one wanted to go to. Throughout their operation, only two orphaned children ended up there. Mothers were unwilling to bring their children to these stationary wards, but the day centre was thriving. We continued to grow, and in 2001, with the help of Western funding, we acquired a new building. We made many improvements, and now we have a day centre and five beds in the ward, which we actively use to assist oncology patients and provide parents with social relief. Much work had to be done with the parents - they were reluctant to leave their children, considering it akin to sending them to an "internat" (boarding school), refusing. However, we explained that it was a few weeks and an opportunity for them to recharge. The Parent Club was established, featuring informal meetings where we invited specialists, artists, and priests. In the new building, we initiated a grief program - writing cards with parents to their departed children and providing support. The volunteer program also evolved, and it became evident that a volunteer coordinator was needed. In 2000, we acquired a rural house 100 kilometres from Minsk with 2.5 hectares of land. Initially intended for siblings, it now hosts families and children with disabilities. At that time, we focused heavily on an educational program, as finding the necessary information was challenging. Significant efforts were also made to translate specialized literature. There is no longer a need for this - the Russian Palliative Fund is doing extensive work on translating literature, and we use it.
At that time, Belarus had seven public hospices - almost one in each region. These institutions were not legally affiliated with us, but we found sponsors for them and tried to provide support. The involvement of state organizations during that period was minimal. We understood the importance of integrating pediatric palliative care into the country's healthcare structure and system. To achieve this, we closely collaborated with the Minsk City Health Department and the Ministry of Health. After completing an internship at the St. Christopher Hospice, invited by Dr. Cecily Saunders, we initiated the first course in palliative medicine in Belarus and Russia, based at the Belarusian State Medical University. The next step was to create the first regulatory document on palliative medicine within Belarus's healthcare system. A doctor from our hospice became the country's first external specialist in pediatric palliative medicine for the Ministry of Health. The opening of the first palliative care department in Gomel was not a government initiative funded by foreign sources. However, it was established within a state polyclinic. Later 2011, a palliative care unit was opened in Minsk at the Children's Home, with more active state involvement. I want to emphasize the significance of developing and implementing clinical protocols in 2013 and the initiation of a national registry for those in need of palliative care. By 2011, we realized the need to expand and involve the government more in pediatric palliative medicine. Coincidentally, the president allocated land to construct a new building during this period. This marked the beginning of extensive work - we developed the project, took our architect to England for consultations with specialists, and gathered funds worldwide for construction. I will never forget a grandmother from Vitebsk who sent us 30 rubles from every pension and a person who sent money while in prison. The government also provided support at various levels, and in 2016, the construction was completed. From the start, we aimed to create a national palliative care centre. At that time, only two public palliative institutions remained in the country - ours and one in Mogilev. As soon as we started the new centre, the structure of palliative care provision changed, with the Ministry of Health becoming the leading player, and we shifted slightly to the side - with a crucial function but somewhat on the sidelines. Currently, we have 32 staff members and 13 contractors. We moved away from direct medical care; we don't have a hospital - our doctors provide consultative support for the state's implementation of medical care for palliative patients. We focus on regions - in Minsk, the palliative care unit manages the situation effectively. Currently, we focus on training caregivers and nannies; we conduct educational events for them. We also have a psychological support program, rehabilitation is progressing, and small thematic programs are running. The volunteer program is growing, playing a crucial role in our operations. A new direction is assisting patients up to 39 years old - challenging but vital. Pediatric care works well in Belarus; the challenge lies in supporting adult patients and transitioning from paediatrics. Our direction aims to address this issue.
Irina Zueva, Nurse at the Belarusian Children's Hospice
By education, I am a paramedic and have been working in hospice care for 12 years. My role involves providing palliative care to children at their homes. Currently, we focus on 50 families, with 9 of them in Minsk and the rest in various regions. Emphasis is placed on regional areas, as the situation with palliative care in Minsk is significantly better.
The palliative care we offer is planned; we discuss the needs with families in advance, select the necessary supplies, and then go out with a driver. The hospice has several nurses who also serve a coordination function. During the initial visit, the nurses develop a plan of necessary activities, considering the patient's individual needs, including the number of home visits, assistance from a psychologist, an habilitologist, and consultations with a doctor. Nurses are also involved in an educational program for parents. After discharge from the hospital, parents should not face the complexities of care alone. We train them in caring for tracheostomies and gastrostomies, wound care, and feeding through a tube. The hospice provides families with the necessary equipment and offers training. Consultations with a doctor can be organized if needed.
Nurses maintain constant close contact with families and, of course, must possess skills in psychological support. Pre-hospital care is also among the necessary skills of a nurse. During each visit, we conduct visual examinations, monitor dynamics, and discuss the prospects and potential needs of the child with the parents. Support is available round the clock; parents can ask questions anytime. We also accompany the process of children's dying. In my practice, there was a case where I supported the mother of a dying boy over the phone, provided psychological support, explained what was happening with the child, and walked with her through the entire journey until the end.
Katsiaryna Sidaruk, Psychologist at the NGO "Belarusian Children's Hospice
Psychological support in the hospice is provided in three main directions: working with parents, children and their siblings, and young adults. Each direction has its specificity. I oversee the third direction - working with young adults with disabilities and severe conditions aged 24 to 39. Our patients suffer from either congenital diseases or have consequences of injuries leading to limitations in their abilities. When working with adults, it is crucial to alleviate aggression, discuss the situation with the patient or the parent of an ill child, and understand it; it is essential to discuss with the surroundings the motives behind the emerging aggression, explain methods of interacting with someone in such an acute state. Many of our adult beneficiaries have a reduced level of intellect, making it difficult for them to comprehend what is happening to them and understand existing limitations - we work with such patients.
An essential part of our work is supporting parents whose children are dying - in moments of acute grief, a person may feel that they are not needed, but this is not true. It is essential to be there, allowing parents to experience their grief, go through all its stages, and feel the presence of someone sympathetic and empathetic. Another aspect of our work is with young people in group settings. Typically, participants in the program include patients with cerebral palsy and other diseases that do not critically limit mobility.
We have not been conducting offline meetings recently due to logistical reasons - even with transportation available, loading the patients and transporting them to the meeting place can be challenging. There are challenges in an online format - only some of our beneficiaries can perceive communication through communication and video. I want to highlight the sensory room, which has become a phenomenon for patients of any age. Through sensory stimulation, we achieve relaxation and a sense of joy and happiness for our beneficiaries. It is crucial to tailor stimulation methods individually, so our specialists collaborate closely as a fully integrated team.
Zlat Kizin, Habilitologist at the Belarusian Children's Hospice
I have been working as an habilitologist in the hospice for three years. Let me begin by defining the term "habilitologist." It is widely known that rehabilitation is the restoration of lost functions, and habilitation works with cases where restoring a function to normalcy is impossible. The essence of habilitation lies in adapting the existing capabilities of a child to the surrounding world using technical means and teaching interaction. It is crucial to involve the child as much as possible in manipulations. Only through interaction during sessions can a child develop skills.
At our Centre, we train specialists from different regions of Belarus. We also travel with educational programs to regions and conduct public seminars. This helps bridge the gap in the capabilities of assisting patients in Minsk, where the level is relatively high, and in other parts of the country.
Assistance in selecting technical devices, including lifts, verticalizes, organising the life activities of severely ill patients at home, and, recently, orthoses and eye-tracking devices for computer control through eye movements, is highly sought. We also educate parents on the specifics of equipment usage. Habilitation activities take time, and thanks to McDonald's, we have several residential rooms where parents accompanying their children can stay.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical
We have been operating since 2016 and strive to incorporate all modern principles and approaches in providing palliative care to children. Firstly, we have expanded palliative care, offering it to all children immediately after diagnosis. We continue this care regardless of whether the child is undergoing treatment and the interventions may be directed towards overcoming illnesses.
The effectiveness of assisting children with severe illnesses is achievable through timely identification of health condition disruptions, intellectual diagnostics, the development of an individual rehabilitation program, and support for the child and their family. Ensuring the accessibility, continuity, and staged implementation of activities aimed at maintaining children's functions, skills, and social possibilities is crucial. Most importantly, a timely transition to palliative care can ensure an appropriate quality of life for the child and their family.
In 2016, changes were made to regulatory acts, allowing children in need of prolonged respiratory support to receive ventilators funded by the state budget. In 2017, a new resolution from the Ministry of Health was issued, regulating the provision of assistance to children in childcare facilities, including palliative care and support for children requiring prolonged respiratory support. Such children can receive assistance in childcare facilities until the age of 18.
In 2019, the regulatory document defining the procedure for providing palliative medical care to children in the Republic of Belarus was updated. This document incorporates all modern approaches to delivering palliative care to children and considers changes in legislation.
In 2020, the approval of the republican register of Children in Need of Palliative Care, which has been operational since 2015, was announced. Responsible individuals in each region are designated for inputting information and maintaining the registry. Finally, this year, new clinical protocols for providing palliative medical care to children have been developed and approved.
A significant amount of progress has been made, and I would like to highlight the results of our work. We have established and organised a multi-level organisational structure for providing palliative care to children, including a republican, regional, and district level. This structure encompasses the efforts of state institutions, the interaction between the public and private sectors, as well as interdepartmental cooperation involving the Ministry of Health, the Ministry of Labor and Social Protection (responsible for residential care facilities with palliative departments and centres for social services), and the Ministry of Education (overseeing corrective and developmental learning centres where individual education programs for children are determined).
A comprehensive package of regulatory documents has been developed, regulating the provision of assistance in both outpatient and inpatient settings and the provision of artificial lung ventilation. Children can receive medications, technical means of social rehabilitation, and necessary medical products—such as ventilators and home suction devices—on preferential terms. Additionally, activities for habilitation and rehabilitation are available in both inpatient and outpatient settings.
A register of children in need of palliative care is in operation. Unified report forms, which can be generated automatically, have been developed. The register contains personalised data for each patient under palliative care, including relevant information on the course of the illness, the implementation of rehabilitation and habilitation activities, and the provision of technical means of social rehabilitation and medical devices.
The register primarily facilitates planning, including long-term planning, for developing assistance throughout the Republic and in each specific region. It aids in providing organisational and methodological support and enhances collaboration among specialists. Over the seven years of our centre's operation, the number of children under palliative care has increased by 1.7 times. The majority of patients are school-aged children with nervous system disorders.
Adolescents constitute a significant portion of the patients, and special attention is given to assisting them in preparing for the transition to adult services, which primarily focuses on helping oncology patients and providing hospice care. The quality of pediatric palliative care has improved, with more children surviving to adulthood, leading to an increasing number of adult service encounters with such patients.
The priority of palliative care in Belarus is assisting at home. Over 80% of patients receive assistance at home, in palliative units of residential care institutions, and in childcare facilities integrated into the healthcare system. Of these, 7% are in childcare facilities, and 10.5% are in social protection institutions—specifically, residential care institutions for disabled children—where palliative beds and units have been established. Currently, 135 children in the Republic are on ventilators, with over 70% receiving support at home and 16% receiving assistance in palliative units within childcare facilities.
During the operation of our Centre, the number of patients receiving non-invasive respiratory support has increased. Currently, this accounts for 30% of all children receiving palliative care at home. In contemporary conditions, we provide high-tech assistance at the intersection of many professions, requiring knowledge in various medical fields and a sufficient level of psychological preparedness. It involves teamwork with specialists from different areas. In our centre, we apply a team-based approach and strive to implement the same approach in the regions.
The Centre is the main institution in the Republic that formulates policies and outlines the main directions for improving the provision of palliative care to children in the regions. We are a unique healthcare institution, distinct from typical healthcare facilities in terms of function within the structure. Our work priority is a team-based and interdisciplinary approach.
The Centre operates both inpatient and outpatient departments, where patients receive habilitation in day hospital conditions. Additionally, there is an outreach service. Regardless of the reason for hospitalisation, each patient is worked with by a team of specialists, including doctors, nurses, psychologists, special education teachers, therapists, caregivers, and a spiritual advisor.
The Centre assesses the effective status and implements a comprehensive set of habilitation and rehabilitation activities. This comprehensive approach allows us to address the maximum needs of the patient and their surroundings and provide recommendations for local specialists to continue a unified approach to patient management.
If necessary, dynamic observation can be continued by the outreach service, which has the ability to travel to any region of the Republic to provide both consultative and methodological assistance. In case of need, the Centre can also provide patient care throughout the Republic.
A distinctive feature of our Centre is that we genuinely provide palliative care, which includes medical, psychological, and social support. For over five years, the Centre has successfully implemented a program to assist patients with neuromuscular diseases—primarily spinal muscular atrophy and Duchenne muscular dystrophy. Patients undergo the entire range of diagnostic measures necessary to assess the dynamic state of the disease and the complete set of required habilitation and rehabilitation activities.
Such support has become essential as our patients have access to pathogenetic therapy. The Centre implements and recommends adopting modern techniques and approaches to providing palliative care in local organisations.
We conduct diagnostics of nutritional status using bioimpedance, individually tailor enteral nutrition and its administration method, and diagnose for the earliest possible initiation of non-invasive ventilation (NIV). We can perform comprehensive dynamic monitoring. Physical therapists provide individual selection and adaptation of technical aids, utilising adaptive feeding techniques and alternative communication methods. Most importantly, we stay connected with our patients using various online interaction methods.
To enhance our work, we have identified key areas of focus. Primarily, attention is needed for approaches to organising palliative care in regions, personnel training in pediatric palliative care services, and ensuring continuity with adult services. The Centre also monitors the provision of essential medications and invasive access to them. Clinical protocols prioritise invasive access for administering medications to our patients.
We also ensure the provision and monitoring of social rehabilitation technical aids and organise and oversee nutritional support. Another focus is informing healthcare professionals, interdisciplinary specialists, and the public about pediatric palliative care services. In regions, we advocate for establishing rapid response services based in children's homes to develop the situation in pediatric palliative care.
Our country has seven regions - six regions and the capital city, Minsk. In three regions and Minsk, regional pediatric palliative care centres based in children's homes with outreach services are already operational. Additionally, 12 offices across the Republic provide patient patronage and can make home visits. The latest regulatory document defining service operations has introduced staffing standards, providing the opportunity to present all necessary positions at the local level to organise assistance.
For further development of pediatric palliative care, we plan to open ten more district-level offices in various regions of the Republic. The foundation of palliative care lies in experienced professionals: paediatricians, district paediatricians, and general practitioners. It is crucial to focus on the principle of teamwork. Unfortunately, not everyone in the public sector understands or is fully ready to adopt this concept.
When preparing to open an office, we emphasise team creation - a doctor, nurse, psychologist, special education teacher, and other specialists are required for office work. In regions, doctors often believe that they don't need to know about palliative care, as they have been district paediatricians for ten years and haven't seen a single such child. This is fundamentally incorrect.
In 2014, the WHO drew attention to migrating specialists from various medical fields into the palliative care system. In 2018, the WHO issued the "Integration of Palliative Care into Pediatric Practice" guidance, which was translated into Russian in 2020. Following the WHO principles, we understand the need for continuous practice and personnel training, and we pay significant attention to this aspect.
Colleagues have mentioned that palliative medicine courses are taught in the general medical practice department. Our Centre's doctors also teach this course. Moreover, we serve as the clinical base for the paediatrics department, conducting several days of training on each cycle of doctors' professional development at our facility. Since last year, the paediatrics department has run a two-week course on the interdisciplinary approach to managing critically ill children and the basics of pediatric palliative care.
In addition, we actively collaborate with the sports medicine and physiotherapy department for professional development and retraining of doctors, with the University of Physical Culture, which trains instructor-methodologists, and with the Belarusian State Medical College, where middle medical personnel and physiotherapy instructors undergo professional development. There is also a unique program on ecotherapy in rehabilitation in pediatric palliative care.
We strive to share our knowledge with specialists from the regions who come for professional development, encouraging them to apply the acquired knowledge in practice and understand the nature of palliative children and how to work with such severely ill children. Additionally, we annually conduct scientific-practical republican conferences, including international participation, to address issues related to pediatric palliative care.
We concluded that the diploma program needs more instructional hours regarding postgraduate training. We approached the Belarusian State Medical University to explore possibly increasing the pediatric palliative care course for the pediatric faculty. We put effort into developing and implementing educational programs on pediatric palliative care not only for doctors and middle medical personnel but also for related discipline specialists - clinical psychologists, social workers, educators - those specialists who work with our children. Another essential task is transitioning children to adult services, which we are currently actively addressing.
Question
How has the registry for pediatric palliative care evolved, what data is collected, how is it utilised, are you satisfied with its current organisation and appearance, and what improvements can be made?
Answers
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
It's challenging to answer briefly - the registry was initially one, and then it became the second. Overall, it's a topic worthy of a separate meeting. Initially, we created it as part of the UNICEF project, and it was elementary. The main goal was to make it easy for people to access. It was primarily intended for research purposes. Later, the Centre modernised it for its own needs. Please visit the palliative centre's website and inquire with them; they will gladly provide more information.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
The registry includes patient identification data for which we obtain consent, all within the legislation framework. We enter data - the history of the child's illness, all data from birth. We also collect information about the child's parents, probands, and the reason for and criteria for placing the child under palliative observation. The registry can include data on the child's hospitalisation, the implementation of various activities - rehabilitative, rehabilitative - what the child is provided with, what technical rehabilitation means, and what medical devices and consumables. Furthermore, we can add this information to the registry if the child receives treatment or consultation. This allows us to obtain statistical information and clinical data, track the dynamics of the disease, and continuously improve the registry. For example, we add labels to avoid missing diagnosis review deadlines or preparing documents for transferring patients to adult services as they approach adulthood. Notably, since 2020, there is a regulatory framework regulating the registry's operation, allowing each region to have a specialist responsible for its maintenance.
Question
Is sharing your model with colleagues from other countries possible and permitted?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
We can show how it works, but all the information it contains is medical and confidential. We can demonstrate its operation, what is entered into it, and the principles guiding its modernisation. We initially adapted it to the state system to obtain the maximum amount of data, track dynamics, make forecasts, build plans, review the situation in each region, and adjust as needed. The registry method indeed allows tracking the entire sphere of pediatric palliative care.
Question
Is the registry integrated into any standard healthcare information system?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Currently, the registry exists separately. We also have separate cancer and diabetes registries - all operate independently. In the Republic, an electronic healthcare platform is being developed. When it becomes operational, all these registries may be integrated into it.
Question
Do patients who are unable to come to the centre or hospice receive remote care?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Do all patients have the possibility to come to the Centre as a state institution? Sometimes circumstances, such as transportation difficulties or parental reluctance, may lead our specialists to provide care at the child's location. However, we can generally hospitalise a child from any region in the Centre. The decision is made based on the specific patient's needs—modern ambulances allow the transportation of even very ill children, but it is not always necessary. If a child is in the terminal stage, there is no point in transporting them hundreds of kilometres.
Nevertheless, we approach each case individually, striving to provide maximum assistance and support. We conduct consultations, develop strategies, and determine appropriate measures. Collaboration with the 'Belarusian Children's Hospice' is crucial. In cases where the Centre faces limitations due to its institutional status, we involve our colleagues. This collaboration also helps us transfer children to adult services. If we identify the need for additional assistance, we share a child with the hospice, where they can be provided with technical means and enteral nutrition if necessary. The replacement of gastrostomy and tracheostomy in children is regulated legislatively and is carried out in local medical institutions. However, for adult patients, this situation remains unresolved. In such cases, hospice programs are instrumental. This is a significant issue that needs to be addressed, as we transfer 300-330 children to adult services every year.
Question
What forms of pediatric analgesic medications, both non-opioid and opioid, are currently available in Belarus?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
Non-opioid medications include ibuprofen and nonsteroidal anti-inflammatory drugs, available in both liquid and suppository forms. As for opioid medications, there is an official liquid form called Oramorph, and we have recently procured morphine in ampoules from the Moscow Endocrine Plant. There are dosage-related questions regarding this form, but it is available. Additionally, we use sedative medications, such as Sibazon (Diazepam), in rectal tubes. For oncological children in need of pain relief, there are extended-release forms of morphine and Fentanyl, though these are intended for older children. In the Republic, there is the capability to manufacture pharmacy formulations of morphine in liquid form for oral intake, as a last resort upon a doctor's prescription. If, for any reason, other liquid forms of analgesics are unavailable, a solution can be prepared at the pharmacy based on the doctor's prescription. The Ministry of Health has assigned pharmacies to each region to ensure the provision of medications for the residents. We are moving away from the practice of administering induction analgesia through subcutaneous and intramuscular injections. The pediatric oncohematology Center covers all children with oncohematological diseases, and we closely collaborate with them. When children in the terminal stage are transferred to our Center, we develop a pain management plan and monitor the implementation of our recommendations in the regions. If necessary, we send doctors to the regions and liaise with pharmacists to ensure the child receives the required medications.
Question
How is the staffing issue addressed? Where and how do you recruit employees who share the philosophy and values of palliative care? What led you to work in palliative care?
Answer
Katsiaryna Sidaruk, Psychologist at the NGO "Belarusian Children's Hospice
As a rule, people who enter palliative care know what this field entails and feel the need to work in a system of helping others. I previously worked in a crisis centre for women with children, and transitioning to palliative care became a logical continuation for me. Over the course of a year, two of my relatives passed away with the help of palliative care, and I clearly understood that the relatives of patients in such situations cannot be left alone. There must be someone they can lean on and rely on for support.
Zlat Kizin, Habilitologist at the Belarusian Children's Hospice
My initial education was as a paramedic obstetrician. Later, I obtained a higher education in rehabilitation. I have always been involved in assisting everyone in overcoming challenges.
Irina Zueva, Nurse at the Belarusian Children's Hospice
I entered the field of palliative care 12 years ago - I ended up in a hospice by chance four years before I started working there. I was sent to training courses. When I understood what hospice care was and saw the memorial wall for children, the thought struck me - I will work here. And then, for four years, I worked towards that goal. The journey to professionalism was very long; I internalised everything, and at one point, it seemed like I wouldn't make it. At a particular moment, after a challenging visit, I thought - if I dedicate my life, will it save the child? I understood that it wouldn't. But my knowledge and skills, readiness, and ability to help and support the child and his mother can bring relief. I am constantly learning - from parents, from colleagues - I know everywhere. How to interact, how not to fall apart myself. And now, I see how valuable my assistance is. Dealing with death is particularly challenging - it is a personal matter for everyone.
Question
Question for the leaders - how do you find employees for your team?
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
We don't stand out from the general trend - we also have staffing issues. Previously, people used to come from courses, but now it's a significant problem for us. Firstly, we are a non-governmental organisation, which means employees need to accrue experience in a budgetary organisation. Medical experience counts, but budgetary expertise does not. Those who have decided never to work in a government structure again may come to us. Secondly, there needs to be more motivation. Young nurses come to us, and I see that they are not interested or motivated. We may need to wait until the new generation grows up. They will be more enthusiastic. For example, we have a problem with volunteers, and this year, two boys aged 15-16 joined us. These two boys impressed me with their willingness to help patients. I hope they will grow up and come to us. It's easier to find personnel in government structures, but it's much more challenging for us in a public organisation. Another critical factor is salary.
Starting this year, all our Western projects are ending, and fundraising will only be in Belarus. We currently have 32 employees in the hospice, and I need to find money to pay their salaries. Sometimes, you have to take a breath. It's like in resuscitation - inhale, exhale, exhale, exhale. Right now, we're exhaling, and we have to accept that. There are situations where we need help to do something. We can't force someone to be a good nurse in palliative care; we can't make a doctor come and say, 'I'm ready.' We can only wait patiently - like titration: drop by drop. Doctors come to the Centre for practice; they come to us. I don't know if they will return, but some might. You have to know how to wait. It's challenging for me, but I'm an optimist. After the exhalation, there will definitely be an inhalation.
Question
Tell us about how the work with volunteers is organized in the hospice: who trains them and coordinates their activities?
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
The best example of organizing work with volunteers is the Polish experience. In 1997-98, I had the opportunity to study it, which was very useful. Our volunteer program has been in place for a long time and requires strict supervision. With each volunteer, we sign a contract that regulates the number of hours worked. Volunteer work in the hospice added positives to our volunteers' resumes when applying for jobs in European countries. And it was essential for us that they fulfil their commitments before receiving a document confirming their work. We have a volunteer club that meets in full once a month. Different areas of activity are covered; for example, a volunteer oversees the transportation history. Currently, it is Yandex.Taxi, which provides five free trips per month for our families to any city in Belarus. All volunteers must take courses and receive a "diploma," in which we write how many hours they studied with a psychologist, how many learned skills for patient transfer, and how much knowledge they acquired from attendants. Experience shows that out of 10 willing to sign up, only one will make it to volunteer work, which is a good result. Of course, we have those who volunteer for a lifetime. There is also an exciting trend - volunteers are getting younger. Usually, 20-22-year-olds came to us, but this year, we took a risk and accepted 15-16-year-old guys, and the experience turned out to be very positive. We also have a program called "Dreams Come True," within which volunteers fulfil the wishes of oncology children - ride a horse, visit certain places - but all this happens under our control, as the responsibility lies with the hospice.
Question
Do state institutions find volunteers for work?
Answer
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
The Centre's outpatient department specialists, such as psychologists and educators, engage volunteers in implementing various activities. We work with our patients at the Centre itself and organize socio-cultural events for them on a volunteer basis - musicians and artists come, for instance. Some volunteers assist in acquiring stationery and other necessary items. We do not involve volunteers in caring for children; the Centre's staff handles these tasks.
Question
Tell us about your plans and projects that you plan to implement.
Answer
Anna Gorchakova, Director of the Belarusian Children's Hospice, Head of the palliative medicine course at BelMAPO
I am a realist, and my main plan is to survive. I am a bit encapsulated at the moment, but living without plans is impossible—if you don't plan, you don't progress. The first thing we are doing is developing rehabilitation, which is highly in demand. We started with a pool history—we want to do aquatic rehabilitation. The second is the creation of a Center for Young Adults—a transitional bridge for patients. We are actively working with adult palliative care services, which, unfortunately, are more focused on oncology. However, we have many non-oncological diseases in young adults. We want to create a separate program, but it requires funding and training. Working with children is very different from working with adult patients. Thirdly, it's an educational project for all doctors, psychologists, and territorial centres. We want to explain palliative care—provide essential knowledge, and inform clearly. In general, it is necessary to report the entire society. For example, in one city, we managed to build a ramp in an apartment, but a neighbour came out and protested, lying down to block the construction. She said, 'Disabled people will not drive under my windows.' Later, we managed to find out the reason for such a strong reaction—her mother was dying painfully, and she no longer wanted to see pain and suffering. In the end, she agreed, but it took a long time. Society needs education; it is crucial.
Ludmila Bomberova, Director of the "Republican Clinical Center for Palliative Medical Care for Children", Chief external expert of the Ministry of Health for paediatriс palliative care
First and foremost, it's the development of palliative care at the grassroots level and the opening of consultation rooms. Of course, there's the educational program that Anna Georgievna mentioned. This year, we started a palliative patient school covering three regions. We plan to make some changes and adapt the format. These are our plans.
You can watch the video recording in English and Russian on our YouTube channel.
The summary in Russian is available via the link.