Collected: 1,267,283 rubles Needed: 5,515,593 rubles.
Children's hospice
18 Feb 2019
8730
1138
We want helping other people to become natural, mundane and normal.
So that children with incurable and rare diseases have the same rights as all ordinary children, so that instead of dashes in their cards there is something that will make life easier for the child and his family. So that they are not "invisible" to society. So that people finally stop juxtaposing "we" and "they".
Every day we see moms and dads, young and not very, and sometimes very young, those who managed to make a successful career, and those who just graduated from the university, and even those who have recently taken a step into adulthood and this life is still and did not have time to understand, to feel. Joyful and tired, and very tired, those who hope and those who have already stopped. Those who are supported and those who are left alone, and whose life is now in the life of one single child - the most important person.
And none of the parents could ever imagine that this could happen to him.
It is important to write, speak and change the attitude of society towards those who need and it is important to help, despite the fact that they will not be able to recover. And not to answer the constantly asked questions about what their chances are. Their chance to live now, at this moment and not experience pain, inconvenience. Be able to leave the house in a comfortable wheelchair, with a compact and lightweight aspirator, and a backup ventilator.
Today there are 50 of them - terminally ill children who cannot be put off until tomorrow. But it is physically impossible to break, there is not enough time in the day, resources.
Children's hospice should not be the concern and experience of a few people. To the best of their ability, everyone can participate in this.
We can all do what is possible, and sometimes impossible, so that hospice children can live the most ordinary lives, if only because out of a few dozen, only a few will fall into the category of adults.
And all this is about a person's love for another person, about indifference. Children's hospice, for the most part, is about love.
Any amount you send helps us to work further and help children. You can always subscribe to a monthly subscription and this amount will be deducted every month from your card until you decide to cancel it.
100 rubles is the price of a cup of coffee and at the same time the opportunity to buy the necessary breathing equipment, and when many people participate in this, it turns into a chance to live.
About Children's Hospice
Some diseases cannot be cured. But that doesn't mean you can't live with them. The Roizman Foundation supports the Department of Outpatient Consultative Care for Children with Palliative Conditions at the Regional Children's Clinical Hospital 1 - the future children's hospice in Yekaterinburg, so that terminally ill children can receive everything they need for a life full of joyful and pleasant moments.
Who are these children
Most of our wards are children with rare genetic diseases that are not yet treatable. Many of them were born healthy, lived several happy months or years of their lives, until they suddenly fell ill. Now their life depends on drugs, special mixtures, devices and medical equipment. Many of which are not for sale with us.
Children under observation are terminally ill boys and girls. Many of them understand and realize what happened to them.
Why is it important to help them?
For adults with serious illnesses in Yekaterinburg there is a special institution - the state hospice. But there is no children's hospice in Yekaterinburg yet. Children who have no chance of recovery are at home or in intensive care units. They need not only love and care, but also constant expensive symptomatic treatment. With proper care, many of them will be able to live without pain, enjoy their childhood and the world around them.
Budgetary funds are not allocated for medical devices, rehabilitation facilities and medicines necessary for these children. The whole burden of caring for a sick child falls on the shoulders of his family. But when even a complete and needy family struggles every day for the life of a child, then the means and opportunities become much less.
Together with you, we will help children and their families to purchase medical equipment for home use, care and rehabilitation products. We can make their life comfortable, pain-free and a little happier.
How the Foundation helps children
The Foundation tries to use every opportunity to support the family and the child.
First of all, we collect money for the purchase of medical devices and equipment, care products and consumables, special mixtures and preparations, find volunteers who will bring the necessary medical devices from other cities and countries, and help to get an appointment with specialists.
Another important direction is that we organize holidays and entertainment events for sick children and their families. Because even the most frightening diagnosis does not mean that a child should be deprived of childhood. Together with volunteers, we try to make children's small but important dreams come true: for example, about a new interactive toy or about meeting funny clowns, about a comfortable wheelchair or an aspirator in the form of a funny animal, or about a friend with whom you can talk and play.
Terminally ill children have the same rights as healthy children, and it is important to support not only a sick child, but his entire family. Therefore, we arrange events for their brothers and sisters, help to distract and relieve their parents a little. It is important to do everything so that these children feel happy, and moms and dads understand that in difficult times they were not left without help. Children should not die alone, in intensive care, but should be in a family, with those who hold their hands and love them no matter what.
How can you help children
We know for sure that any person, being anywhere in the world, can help people with us. If you have free time, just write and we will decide how exactly you can help.
First of all, we collect money for the purchase of expensive medical devices, medicines, consumables and special mixtures for children. Any amount of donation brings us and our wards closer to ensuring that children live without pain, have time to enjoy childhood and the world around. In the "Urgent Help" section, we put all the information on children.
Equally important is the help of volunteers, for whom there is always a job. Most often, we need help with organizing events, taking pictures, transporting children, transporting vital things or documents by car, finding specialists in a particular field, communicating with children. Now we are recruiting people who have some free time and are willing to work with children on a regular basis, to come to families.
It is especially important for us to cooperate with people who live in Moscow and abroad, who are ready to help with logistics, who are ready to take with them in their luggage and bring the necessary things for children. Who is ready to help with the purchase of vital medical devices and mixtures. Many of these devices are not sold in our country, and many abroad are much cheaper. In order for the child to receive the necessary assistance, you need to find a place where to buy equipment, consumables or a medical device, purchase it and arrange delivery to Russia. Help is needed at every stage.
Hospice is the basic structure of palliative care for the care of seriously ill people in the terminal state (when organ damage is irreversible), who have days and months to live rather than years.
Russia
In June 2014, the first stage of the Children's Hospice for 12 patients (plus eight day hospital beds) was opened in Kazan as part of a public-private partnership between the Ministry of Health of Tatarstan and the Foundation. Angela Vavilova. The hospice is located on Academician Korolev Street, 67. Previously, only two wards were located at this address in the building of the Kazan Children's Therapeutic Sanatorium No. treatment. Also in 2014, 10 children's palliative beds were opened in Kazan in a specialized Republican Children's Home.
The Volgograd Regional Clinical Hospice, designed for 100 beds, has a pediatric department and an outreach service, and assistance is provided to children with various diagnoses. The children's palliative department is designed for 20 beds.
Since 2013, a children's palliative department with 30 beds has been operating in the Mineralnye Vody of the Stavropol Territory in the Central District Hospital.
In Novokuznetsk, Kemerovo Region, in March 2013, a children's hospice department was opened in Children's Hospital No. 28, designed for 25 beds.
In Krasnodar, in the city clinical hospital No. 3, 20 children's palliative beds appeared in the children's department in 2013.
In 2014, palliative care services at home (PPC) operated in 54 regions of Russia, in 89 institutions (children's hospitals, orphanages, adult and children's hospices, etc.). In total, about 400 CCP beds, 13 CCP departments, three children's hospices, one specialized CCP center, 12 outreach services for providing CCP at home have been opened.
Belarus
The British call this institution not hospice (hospice), but respice (from English respite - respite). Patients come here not only in the terminal stage of the disease, but also families with terminally ill children who need a "respite".
The main goal of Helen & Douglas House is to make terminally ill children and young people feel the fullness of life, without fear for their health, and give their families a rest.
In both hospices, you can leave the patient in the care of the staff, and leave the family.
The length of stay in the hospice is limited and usually only a couple of days for those who came to "rest", but can be extended for those who come here for the last time.
The hospital is designed for 30 patients, the length of stay in the hospice is a little less than a month, but if necessary, the child can stay there longer. The stay in the hospice for patients is completely free, paid for by insurance. The hospice attracts philanthropists to raise funds, donations go not to specific children, but to the hospice support program.
The hospice doesn't look like a hospital, it's a two-story orange building. On the ground floor there are wards for sick children, educational, treatment, play and other rooms, on the second floor in separate wards families of patients live. There is a swimming pool, jacuzzi, where they do water massage, a room with a trampoline. There is dolphin therapy.
There are seven employees for every child. The hospice employs nurses, support staff, educators, volunteers, pool coaches, creative activities specialists, social workers. There are no psychologists and priests in the state, but at the request of the family they can be invited.
Canada
Vancouver is home to North America's first children's hospice, Canuck Place, which opened in 1995. Funds for the creation of the hospice were collected through a specially created fund, the partners of which were the hockey club Vancouver Canucks (hence the name of the hospice), as well as several other well-known organizations and foundations.
The hospice provides services to 350 children under 19 and their families. The hospice accepts patients with advanced life-threatening conditions such as heart disease, nervous system disease, cancer, and metabolic disease from all over British Columbia.
Hospice services are annually used by about 200 children and their families, of which 120 children periodically go to the inpatient department. Of the seven patient bedrooms, five are designed for one child and his family, and two more rooms are designed for the simultaneous stay of several patients. Nine children and four families can be in the hospice at the same time.
In addition to the inpatient department, the hospice operates an outpatient clinic Madison Clinic.
Usually, the referral to hospice is given by the attending physician, but the child's family can seek help from hospice specialists and independently at any stage of the disease.
In a hospital environment, doctors and nurses provide round-the-clock medical care, including pain relief, palliative care, relief of symptoms of the disease and side effects of treatment. Hospice doctors are renowned experts in the field of palliative care. In addition to the hospice, they work at the Vancouver Maternity and Childhood Center and the British Columbia Children's Hospital. All of them teach and research in the departments of pediatrics and the Department of Palliative Care in the Department of Family Medicine at the University of British Columbia. The hospice employs psychologists and social workers who regularly meet and talk with children, their parents, siblings.
The hospice has music, play and art therapy programs. School-age children, both patients and their siblings, can attend school during their stay in the hospice. The hospice has a full-time teacher and teacher assistant; they are assisted by volunteers. The hospice employs about 300 volunteers, each of them has a specific role in the hospice.
Hospice stays are free for children and their families. The hospice budget ($7.6 million a year) is 27% funded by the British Columbia government. The hockey club contributes another 20% to the budget. The rest of the budget consists of charitable donations from individuals and organizations.
The center uses several therapeutic programs such as hydrotherapy, music and sensory therapies. Specialists also come to the center with dogs and miniature horses trained to interact with children. Several times a year, the center organizes "brothers and sisters days" when children whose brother or sister suffers from a serious illness can spend time here together. Family members may stay overnight near terminally ill children.
The staff of the center is made up of nurses, developmental specialists, carers and specialists with experience in pediatrics. Nurses must hold a nursing degree. Nurses must also have a Nursing Specialist Diploma. The Darling Home for Kids invites volunteers. There is also a list of volunteer positions. For example, "volunteer who goes shopping and collects donations", "volunteer in the kitchen", "volunteer for organizing festive and sports events" - a total of 14 positions.
The center receives financial support from the Department of Health and the Department of Human Services, but the center's budget is largely dependent on philanthropy. Twice a year, the center organizes major fundraising events.
Netherlands
There are seven children's hospices in the Netherlands, of which three are Mappa Mondo hospices. The Mappa Mondo hospices are funded by the local branch of the Red Cross.
This is exactly the hospice; only symptomatic treatment is carried out there, for palliative care there is outreach assistance.
The hospice is for children from 0 to 18 years of age with diseases recognized as incurable. Doctors from hospitals send to the hospice, their decision is confirmed by a commission of representatives of the insurance company and the hospice. The poor and uninsured also have the opportunity to get into the hospice, each case is considered by a special commission of the Red Cross. Financial assistance is not provided to patients. But if the case is out of the ordinary, such assistance is provided by an insurance company, or the state allocates a subsidy to an individual family.
The patient stays in the hospice for an average year. In exceptional cases - as much as necessary. The hospice has a number of patients who are taken home for the weekend.
Outpatients are handled by a palliative service that operates separately.
A traveling palliative care service may transport drugs. The hospice does not have such a license, but if a patient needs pain medication, at any time of the day or night they call the patient's attending physician, who sends a fax to a special, round-the-clock pharmacy, and from there they bring the drug in the right amount to the hospice within ten minutes.
Parents in the hospice cannot stay overnight. A psychologist assigned by the social service at the request of the insurance company works with the family.
The hospice has a drawing studio, a games room, and a relaxation therapy room. Children who are able to walk are taken to school by volunteers. Those in wheelchairs are taken to school every morning by taxi, and then brought to the hospice. The insurance company pays.
The hospice staff consists of ten specially trained nurses and ten volunteers. Each employee leads two or three families, keeps in touch with them and talks about the child's condition. There are two teachers on staff. Forty volunteers. Their functions include playing with children, feeding, washing, shopping, taking children to school (if the child is able to learn), they ride children on special bicycles.
The material was prepared on the basis of information from RIA Novosti and open sources
Hospice is the last refuge for the terminally ill when medicine is already powerless to help. Hospice is a slow dying within the walls of a government institution, saturated with the smells of decay. Hospice is the acceptance of death when it becomes already quite tangible. Approximately with such stereotypes we associate similar institutions. And if you imagine that this hospice is for children?
Therefore, when I was offered to travel to St. Petersburg and get acquainted with the activities of an NGO for pediatric palliative care for minors with serious and incurable diseases, I thought for a while. Due to natural impressionability, it was difficult to decide to see what subconsciously seemed to me as a layman. However, on the other hand, as a doctor, and besides, the father of two children, it was interesting for me to come into contact with this type of medical and social activity, which is not so widespread in Russia, and see everything with my own eyes.
In general, the idea of creating a St. Petersburg children's hospice arose back in 2003, when, through the efforts of the archpriest Alexandra Tkachenko charitable foundation was organized "Children's Hospice" At the same time, there were simply no such samples, the experience of which could be adopted, in the country. Everything was built on a whim and on enthusiasm. Of course, not without the support of the city authorities and private investors.
At first, having received a license to conduct medical activities, assistance to seriously ill children was carried out on an outpatient basis, that is, there were mobile teams providing pre-hospital nursing pediatric care, outpatient care, specialized support for pediatric oncology with the necessary socio-psychological component, and by 2010, finally the first inpatient institution in Russia was opened, providing comprehensive palliative care to children - St. Petersburg State Autonomous Healthcare Institution "Hospice (Children's)".
1. This building of the former "Nikolaev Orphanage" (Kurakina Dacha), by the way, is an architectural monument of the 18th century, transferred to the hospice as a room. At the time of its transfer, it was actually in disrepair, and the project for its reconstruction, in addition to strict requirements for the protection of monuments, had to take into account the infrastructure necessary for a medical hospital. Thanks to the incredible efforts of the designers, it was possible to combine all this. So - outside the house seems to be wooden (as expected), but inside is a completely different world. 
2. Next to the body surrounded by so loved ones varlamov.ru
modern urban high-rise buildings - a well-groomed playground. 
3. Let's look inside? 
4. What does it look like? School? Polyclinic? Private educational center? Does it look like a hospice in the way that is still rooted in our heads? 
5. You can talk platitudes - a feeling of home comfort (it tastes good, but we won’t argue about color here), an atmosphere of confidence and positive emotions. It's not that important. The main thing is not a hospital with white-tiled walls and rusty gurneys along them. 
6. On the walls are real paintings (not reproductions), including those made by students of the St. Petersburg State Academic Institute of Painting, Sculpture and Architecture named after I. E. Repin. 
7. Meeting with the hospice staff. By the way, this part-time room is a classroom for developing and creative activities, and not only textbooks, but using music recording, video editing and even creating your own cartoons. 
8. Meet - this is the same Alexander Tkachenko. Not a strict, frowning obscurantist archpriest who thinks in dogmas, but quite a lively charming interlocutor with a great sense of humor, able to captivate the interlocutor and completely immersed in this whole story. Not forgetting, however, about the family - and he, for a second, has four sons. 
9. Here, for example, is a card index containing data on all the inhabitants of the hospice. For reference: the hospice is designed for 18 round-the-clock beds, 10 day beds, as well as organizing the work of mobile teams at the rate of 4,500 visits per year. At the same time, there are licenses for all necessary activities, including the use of narcotic and potent drugs. 
10. Round-the-clock medical control. 
11. And this is a creative team, thanks to which new ideas are created for an interesting, and most importantly, as less painful life as possible for children. Precisely life, not existence and survival. 
12.
13. One of these notions is the sensory room. Its main purpose is classes with relaxation and polysensory stimulation, the purpose of which is emotional discharge, overcoming protracted crisis states, and most importantly, establishing trusting contact between children and specialists. Look - here are light fibers, and a swing-petal, and a board of tactile sensations, and a multimedia projector with a screen. 
14. An interesting detail of the hospice is a board on which everyone can express their own thoughts to alleviate the suffering of others and receive additional strength for life. 
15. Lucky - during a visit to the hospice, there was just a concert for ... I don’t want to say the word "sick" or "patients", let it be - for the inhabitants of this house. 
16.
17.
18.
19.
20. One of the game rooms, divided into several spaces - a zone for the development of motor functions, a zone for the development of intellectual functions (games, puzzles, constructors) and a zone for the development of social skills, where toys for role-playing interaction act as means. 
21.
22. In the basement there is even a swimming pool with hydromassage and other bells and whistles. Are we at the hospice? By the way, the designers of the building were against the installation of the pool, but the archpriest managed to convince them. After all, if, for example, a child needs to be baptized, then where to get the "Jordan"? In general, we came to a common denominator. 
23. Various "self-propelled carriages" that make life easier for children with limited mobility. 
24.
25. Pharmacy and warehouse of medicines. 
26. The ground floor of the hospice is completely devoted to the staff and is more technical. However, even here there is a design that may be controversial from an artistic point of view, but certainly does not give the feeling of being in some kind of morgue. 
27. Behind these doors, for example, are refrigeration units where food is stored. 
28. Although ... The morgue is here too. Well, not the morgue, of course. This is just a room where a family says goodbye to a dead child. It's called the sad room. Here is a gurney covered with disposable linen, as well as a candle and an icon, which, of course, can be removed if the family's religion requires it. 
29. There is also a rack with children's toys and a shelf with medicines that the parents of the child may need. 
30. When someone in the hospice dies, this candle burns at the reception for several days. 
31. We rise to the second floor. It is the main one, since it is here that children's wards are located. 
32. Nursing post. 
33. And even a separate room for the cat. 
34. Parents spend almost all the time with very small inhabitants. 
35.
36. And this boy is already quite independent. He is erudite beyond his years, reasonable, it is quite possible to communicate with him as with an adult. Many probably noticed that serious illnesses make children older and wiser much earlier. 
37. We will not disclose names, surnames and diagnoses. 
38. By the way, this miniature Cologne Cathedral was assembled by a young designer so carefully that Alexander Tkachenko is simply delighted. In any case, the local residents need such attention like air or that same nutrient solution. 
39. Next to the treatment room. 
40. And this is an intensive care unit for the most difficult children who require round-the-clock supervision and support, where, in addition to functional beds, there are sofas for parents. An interesting and probably symbolic detail - the ceilings are decorated in the form of a clear sky with balloons flying up. 
41. Well, illness is illness, and dinner, as they say, is on schedule. 
42. What do we have on the menu today? 
43.
44. And as many as twelve wall clocks on the wall. Also a symbol? 
45. And on the uppermost attic floor there is a house church in honor of St. Luke (Voino-Yasenetsky), where services are held weekly. It is open at any time and there are candles completely free. 
Hospice is the basic structure of palliative care for the care of seriously ill people in the terminal state (when organ damage is irreversible), who have days and months to live rather than years.
Palliative care is a set of measures aimed at improving the quality of life of a patient and his relatives who are faced with problems associated with the presence of a life-threatening disease.
Russia
The service includes children's doctors, nurses, a social worker, a psychologist, a priest, and volunteers who help families with seriously ill children.
The House of Richard functions mainly on charitable donations from individuals and organizations, it also collects funds through a network of thrift stores, where people bring clothes, equipment, souvenirs and knick-knacks, which are then brought into marketable condition and sold. Volunteers of the House of Richard also arrange various events: charity marathons, tea parties, games, competitions, etc. On average, the House requires £ 3 million a year to run normally.
The hospice offers eight rooms for children from 0 to 19 years old, two of which are combined into a shared room so that parents can be near the child. There are also two apartments where the patient's family can live. The hospice residents have at their disposal a multi-sensory room, playroom, a chapel that can be used by people of different faiths, a room for teenagers, a computer room, a garden for walking and a playground.
The Richard House has a day center located in a separate building from the hospice, where children can stay for a few hours after school or for the whole day and take part in activities organized for children who are stationary in the House.
Richard's House provides "respice" services: for two weeks you can leave your child in the care of the staff. Parents or guardians can leave for this time or settle in one of the apartments at the hospice.
The hospice also accepts emergency patients, for which the institution always has four free beds (and two extra beds for holidays and summer).
All hospice services are free.
Richard's house is not a medical institution, there are no doctors on staff, only qualified nurses (as well as students who are in practice) and educators work with children. If necessary, medical care for children and adolescents is provided by specialists from the Great Ormond Street Hospital, which cooperates with the hospice. However, the hospice does not accept patients in need of medical treatment and ongoing medical care, except in the final stages of a child's or adolescent's life.
The main goal of creating the House of Richard is to support families: parents, brothers and sisters - in caring for a seriously ill child. For brothers and sisters, a special group is organized here - the Merry Group, which meets every month. Children (aged seven years and over) get together for events, trips and just heart-to-heart talks.
There is also a special program in which trained volunteers work with children (siblings of patients) one on one.
Work is also being done with seriously ill children themselves, especially with patients over the age of 17, who are assisted in the transition from the usual care provided by children's services to the work of institutions dealing with seriously ill adults.
Support for families is provided not only during the stay of the child in the House of Richard, but also after his death. The House has a special room where the body can be kept until burial, regardless of whether the child died directly in the Richard House, the hospital or at home. The family is provided with psychological assistance for as long as necessary, relatives are also invited to memorial services in memory of former patients of the House.
George Mark Children's House is located in northern California, near San Francisco. They help chronically and terminally ill children and those children whose illnesses limit their lifespan. The hospice was opened in 2004 and became the first in the United States The age of patients is from 0 to 19 years.
The building of the George Mark House looks like a large private house, which hospice workers believe contributes to all three types of palliative care they provide: rest and temporary relief of symptoms, assistance with the transition of patients from hospital to home, and care for terminally ill patients at the end. life.
Household workers provide both medical and psychological assistance. The staff relieves children of pain and symptoms of their illnesses with the help of art and play therapy, music therapy, practical and emotional support for the child and his family. In addition to doctors and nurses, there is a psycho-social manager, a child life specialist, a spiritual care coordinator for the child and his family, a psychologist, a pharmacist and a team of volunteers. Psychological counseling is provided for grieving parents, brothers and sisters of the child. The consultation is not limited in time.
Children nearing the end of their lives and their families can spend the last days of a child together. On the territory, in addition to apartments for families and wards for patients, there is a computer room, communal gardens and gardens for privacy. There is also a corner for your favorite pet. Concerts and festive dinners are organized.
Germany
The St. Nicholas Children's Hospice is located in a village 200 km from Munich. The outpatient service was established in 2004, the hospital - in 2005. Funds for the construction were allocated by insurance companies and philanthropists.
The hospice provides comprehensive medical and social care, including pain relief. Mostly there are children with non-oncological chronic diseases: lesions of the central nervous system, genetic diseases, Hurler or Hunter syndrome, severe forms of cerebral palsy. Cancer patients receive care at home or in the clinic.
The hospital is designed for 30 patients, the length of stay in the hospice is a little less than a month, but if necessary, the child can stay there longer. The stay in the hospice for patients is completely free, paid for by insurance. The hospice attracts philanthropists to raise funds, donations go not to specific children, but to the hospice support program.
The hospice does not look like a hospital, it is a two-story orange building. On the ground floor there are wards for sick children, educational, treatment, play and other rooms, on the second floor in separate wards families of patients live. There is a swimming pool, jacuzzi, where they do water massage, a room with a trampoline. There is dolphin therapy.
There are seven employees for every child. The hospice employs nurses, support staff, educators, volunteers, pool coaches, creative activities specialists, social workers. There are no psychologists and priests in the state, but at the request of the family they can be invited.
Canada
Vancouver is home to North America's first children's hospice, Canuck Place, which opened in 1995. Funds for the creation of the hospice were collected through a specially created fund, the partners of which were the hockey club Vancouver Canucks (hence the name of the hospice), as well as several other well-known organizations and foundations.
Hospice provides services to children under 19 and their families. The hospice accepts patients with advanced life-threatening conditions such as heart disease, nervous system disease, cancer, and metabolic disease from all over British Columbia.
Hospice services are annually used by about 200 children and their families, of which 120 children periodically go to the inpatient department. Of the seven patient bedrooms, five are designed for one child and his family, and two more rooms are designed for the simultaneous stay of several patients. Nine children and four families can be in the hospice at the same time.
In addition to the inpatient department, the hospice operates an outpatient clinic Madison Clinic.
Usually, the referral to hospice is given by the attending physician, but the child's family can seek help from hospice specialists and independently at any stage of the disease.
In a hospital environment, doctors and nurses provide round-the-clock medical care, including pain relief, palliative care, relief of symptoms of the disease and side effects of treatment. Hospice doctors are renowned experts in the field of palliative care. In addition to the hospice, they work at the Vancouver Maternity and Childhood Center and the British Columbia Children's Hospital. All of them teach and research in the departments of pediatrics and the Department of Palliative Care in the Department of Family Medicine at the University of British Columbia. The hospice employs psychologists and social workers who regularly meet and talk with children, their parents, siblings.
The hospice has music, play and art therapy programs. School-age children, both patients and their siblings, can attend school during their stay in the hospice. The hospice has a full-time teacher and teacher assistant; they are assisted by volunteers. The hospice employs about 300 volunteers, each of them has a specific role in the hospice.
Hospice stays are free for children and their families.
The hospice budget ($7.6 million a year) is 27% funded by the British Columbia government. The hockey club contributes another 20% to the budget. The rest of the budget consists of charitable donations from individuals and organizations.
The Darling Home for Kids is located near the city of Milton in southern Ontario, forty kilometers from Toronto. This is a small health center that has a palliative care program for children and adolescents, as well as a temporary assistance program for families who care for sick children at home (the term respite care is used for this). Children from 0 to 18 years old are accepted here. The center was opened in September 2004 by the charitable organization The Calendarbrook Society.
Palliative care includes four types of programs: temporary palliative care (in case the child lives at home most of the time and is in the center for no more than a week at one visit), emergency palliative care, palliative care in transition periods and palliative care for children in terminal stages of illness .
The center has only two single rooms for palliative patients and ten beds for children who receive temporary assistance. In addition to the wards, there is a kitchen, a dining room, a special rest room, and a guest room.
The center uses several therapeutic programs such as hydrotherapy, music and sensory therapies. Specialists also come to the center with dogs and miniature horses trained to interact with children. Several times a year, the center organizes "brothers and sisters days" when children whose brother or sister suffers from a serious illness can spend time here together. Family members may stay overnight near terminally ill children.
The staff of the center is made up of nurses, developmental specialists, carers and specialists with experience in pediatrics. Nurses must hold a nursing degree. Nurses must also have a Nursing Specialist Diploma. The Darling Home for Kids invites volunteers. There is also a list of volunteer positions. For example, "volunteer who goes shopping and collects donations", "volunteer in the kitchen", "volunteer for organizing festive and sporting events" - a total of 14 positions.
The center receives financial support from the Department of Health and the Department of Human Services, but the center's budget is largely dependent on philanthropy. Twice a year, the center organizes major fundraising events.
Netherlands
There are seven children's hospices in the Netherlands, of which three are "Mappa Mondo" hospices. The first Mappamondo children's hospice was opened at the initiative of the Red Cross in 1997 in Zwolle, the second in Rijswijk in 2002, and the third in The Hague in 2006.
All of them are close to local hospitals, if you need additional help, an ambulance is immediately sent from the hospital.
The Mappa Mondo hospices are funded by the local branch of the Red Cross. This is exactly the hospice; only symptomatic treatment is carried out there, for palliative care there is outreach assistance.
Hospice is for children from zero to 18 years of age with diseases recognized as incurable. Doctors from hospitals send to the hospice, their decision is confirmed by a commission of representatives of the insurance company and the hospice. The poor and uninsured also have the opportunity to get into the hospice, each case is considered by a special commission of the Red Cross. Financial assistance is not provided to patients. But if the case is out of the ordinary, such assistance is provided by an insurance company, or the state allocates a subsidy to an individual family.
The patient stays in the hospice for an average year. In exceptional cases - as much as needed. The hospice has a number of patients who are taken home for the weekend.
Outpatients are handled by a palliative service that operates separately.
A mobile palliative service can transport drugs. The hospice does not have such a license, but if a patient needs pain medication, at any time of the day or night they call the patient's attending physician, who sends a fax to a special, round-the-clock pharmacy, and from there they bring the drug in the right amount to the hospice within ten minutes.
Parents in the hospice cannot stay overnight. A psychologist assigned by the social service at the request of the insurance company works with the family.
The hospice has a drawing studio, a games room, and a relaxation therapy room. Children who are able to walk are taken to school by volunteers. Those in wheelchairs are taken to school every morning by taxi, and then brought to the hospice. The insurance company pays.
The hospice staff consists of ten specially trained nurses and ten volunteers. Each employee leads two or three families, keeps in touch with them and talks about the child's condition. There are two teachers on staff. Forty volunteers. Their functions include - playing with children, feeding, washing, shopping, taking children to school (if the child is able to study), they ride children on special bicycles, in general, they take care of them.
The material was prepared on the basis of information from RIA Novosti and open sources
You know, if I had the opportunity to make three wishes, I would spend one of them so that this candle would never light up. This is because the candle is in the children's hospice and it is lit when the soul of one of the children rises to heaven...
I saw a lot in this life, I was even in war zones, but believe me, children's hospice is a very difficult topic for me to understand and perceive. After all, there are children with incurable diseases. Honestly, I even gathered my thoughts for a long time to write a post.
St. Petersburg Children's Hospice was founded in 2003 on the initiative of a man with a very kind heart - Archpriest Alexander Tkachenko (pictured).
It is worth noting that, in general, amazingly responsive people work in the hospice, who believe that "if you can not add life to days, you need to add days to life." The work is very difficult, not everyone is able to alleviate the suffering of children, support them morally and physically.
This is the first institution of palliative care for children in Russia. Every year about 400 children receive help from hospice specialists. Organizational experience, methodological approaches and practical developments have long been used to develop the palliative care system in other regions of Russia.
In the children's hospice, most of the diseases are diseases of the central nervous system and genetic disorders, oncology - no more than 10-20%. By the way, this is the key difference between children's hospices and adults, where cancer is the main profile.
It is the specificity of diseases that determines the fact that children can live or be observed in a children's hospice for quite a long time, unlike adults, whose time in a hospice is very limited. And unlike adult hospices, during a stay in a hospice, the child grows, develops, and he must be provided with opportunities for learning and development.
In a children's hospice, I asked the question, what percentage of children are cured? A sad answer was received - 0%. After all, children are sent to palliative care, which medicine cannot cure. If the child is cured, it means that at the stage of diagnosis and decision-making by the medical commission, a medical error occurred ...
The phenomenon of hospice is perhaps different: for example, doctors give a child no more than 2 weeks of life, and he lives for a month or two. Such cases were, and repeatedly. In general, in the hospice they try to see a miracle not in the fact that the child is cured, but in every day that he lives. It's not easy, but without this philosophy there would be no hospice.
The hospice also provides spiritual assistance to children. It is worth noting that the Children's Hospice in St. Petersburg appeared on the initiative of the Church and with the support of the state.
The Russian Orthodox Church at the very first stage invested all its experience and philosophy in the creation of a system of assistance to seriously ill children. But in the future, people of various faiths (philanthropists, specialists, experts) worked to ensure that the institution could effectively exist and professionally provide assistance.
Then all development programs, all new projects of the hospice (for example, such as interfaith interaction, i.e. involving representatives of faiths in helping children, developing spiritual care as a professional service within the framework of palliative care) are all the result of Presidential grants won by the hospice team .
It is worth recognizing that high-quality palliative care for children is impossible without combining, on the one hand, state funding and charitable programs, on the other hand, the efforts and participation of all public institutions and structures. Therefore, I welcome that there is a consolidation of all the good forces of society to help those who need it.
The hospice is now raising money for two ventilators. These are devices that allow children not to stay in intensive care, but to be at home or in a hospice with their parents. If you would like to support, contacts can be found at
