Palliative care for children. Palliative care: a rosy childhood in spite of illness
| Life without pain and other severe symptoms . The child should be as free as possible from pain and other severe manifestations of the disease, and this can be achieved with competent palliative treatment and professional care. | Attention and respect. A child, even if he is very sick, has the right to have adults - both relatives and specialists - hear him, understand his condition, needs, fears and desires. |
| Family . Relatives of a child of a seriously ill child, who care for him around the clock, need support and help. The child's family should have the right and opportunity to be with him at all stages of illness and death. | Individual approach . Palliative care is provided taking into account the specifics of the disease, age, and condition of each child. At the same time, the number of therapeutic and diagnostic measures and painful manipulations is minimized in cases where they do not bring obvious benefits. |
“Palliative care for children is an active, comprehensive care for the body of the child, his psyche and soul, as well as support for his family members. It begins from the moment the diagnosis is established and continues throughout the entire period of the disease, including against the background of ongoing radical treatment. Caregivers should assess and alleviate the child's physical and psychological suffering and provide social support to the family. To be effective, palliative care requires a broad, multidisciplinary approach, involving the child's family and community resources.”
World Health Organization (WHO) 1998, ed. 2012.
The concept of palliative care is broader than the concept of "palliative medicine". According to the WHO definition, palliative care is not just a direction of medicine, but a medical and social activity, the purpose of which is to improve the quality of life of a child and his family. Palliative care is distinguished by a multidisciplinary approach: not only getting rid of pain and severe symptoms of the disease, but also psychological assistance, social support for the child and his relatives.
Principles of palliative care for children:
Multidisciplinary nature of care
Availability 24 hours, 7 days a week
Quality
Humanity
free
Continuity
Cooperation of state, public and other organizations, including international ones, in resolving issues of PC provision to children and their families
In Russia, the concept of palliative care is legally enshrined in Articles 32 and 36 of the Federal Law of the Russian Federation No. 323-FZ “On the Basics of Protecting the Health of Citizens in the Russian Federation” dated November 21, 2011. In 2015, the Ministry of Health of the Russian Federation approved the Procedure for the provision of palliative care to children. This is the first document clarifying the legal norms for the provision of medical care to terminally ill children in our country.
Exists delusion that palliative care is needed mainly by patients in the terminal stage of cancer, who have only a few months or weeks left to live. If we are talking about children, this is doubly misleading: firstly, palliative care is provided at different stages of an incurable disease, and with the proper quality of such care, children can live a long time. Secondly, oncological diseases are by far not the most common conditions in children that require palliative care, and account for only 10-20% of cases.
On the second Saturday of October, the world celebrates Hospice and Palliative Care Day. A new topic for Ukraine, but at least once a year it is customary to remember and talk about the problems of palliative patients. True, they say mostly public organizations and, occasionally, relatives of patients. Often already dead. Palliative patients themselves are usually silent. There are reasons for that. But lately I understand more and more clearly - you can’t be silent!
So let's get to know each other. I am Irina, I am 28 years old, I am a palliative patient. Those who are familiar with the word "palliative" often think that we are talking about a person who is living his last days. This is not entirely true. Palliative also refers to those patients who have an incurable, progressive disease, leading to a reduction in life expectancy. Now, I have several diseases that cannot be cured. Which is even difficult to contain. Therefore, my life expectancy is much less than the average. This is what I say when I don't want to hurt an impressionable interlocutor. And to be more precise: my disease is incurable and I will not live to see 65. And 50, probably, too. Well, up to 40 is not a fact at all. No, I don’t wake up every day with the thought of an imminent death (although I am awakened by a reminder to take medicines, without which I may not live to be 29 years old). And no, I do not live, "trying to be in time ...". I know that I still won't make it. Even if I were guaranteed 75 years, EVERYTHING would still be there, I would not have time. I don't... a thousand more patterns. I just live.
I live the day that I have. You have and I have. I know that I may not have tomorrow. But you, too, after all ... Who knows what brick will fall on your head? Whether for you or for me. Life is an unpredictable thing. Even if they tried to predict its duration :). I knew that my life would not be long at the age of 14. And I never thought in terms of the future. I didn’t have thoughts “when I’m 20…”, because I knew that I might not turn 20. This is probably why it is so difficult for me now to realize my 28 and approaching 30 - I have never thought about these numbers. But that didn't stop me from dreaming and making plans. Which sometimes came true, sometimes not. Everything is like everyone else. Like those who think that "tomorrow" is guaranteed to them. You can probably say that I have done a lot in my years.
Three years ago, before a very terrible operation, I "just in case" made a slide show to the song DDT "This is all that will remain after me." It turned out that in addition to two titanium joints and a pacemaker, after me there will be many things that I stood at the origins of. Myasthenic Forum and Association, Happy Child Foundation. Surviving children and relatives of those who did not survive, but for whom everything possible was done, will remain. Over the past 3 years, the list has grown even more.
But, by and large, it doesn't matter. Because I do not seek to "leave my mark on the earth." I just live. I live the way I want to and do what makes me happy. Here and now. Of course, I would like my undertakings to live on after me. But only because they seem to me useful for people. And I want this usefulness not to end with my death. I don't like to talk about my problems. I feel stupid when they begin to actively sympathize with me and even more actively regret. Sometimes I hide my condition. From doctors, for example. Because if you cannot be cured, then you are not particularly interested in curing. So, if I want to be treated (albeit a banal fracture), I do not voice 2/3 of my diagnoses. When I moved to live in Kiev, they asked me: “Are you not afraid that you will be denied medical care because of the Zaporozhye residence permit?” No I'm not afraid. Because I do not count on hospitals where they look at registration. Here, in Kiev, I rely only on a few doctor friends who, if I call, will rush to me and do whatever is necessary. And I won't go to the hospital. Not because I have a Zaporozhye residence permit. But because I am a palliative patient, and for such people in our country, medical care, as it were, is not shown.
Am I afraid of death? I'm afraid to stop living. Not only cease to exist physically, but also cease to live the life that brings me pleasure. I'm afraid to become completely weak and dependent on others. I am afraid that at some point there will simply not be enough resources (strength, money, connections, conditions, etc.) to continue an active life. And I'm afraid of hospitals and intensive care units. My biggest fear is dying in the intensive care unit. I know how it happens, and I don't want myself to die like that. More precisely - such a life, even before death.
I'm dreaming. About everything everyday and about what, I realize, will forever remain a dream for me. I dream of living longer. An active life filled with interesting events. I want to be able to say “no” in advance to pointless resuscitation. I want to go sledding down the hill in winter. I want to know that the medicines that I cannot live without will not be lost from pharmacies for the next re-registration. I don't want to writhe in pain if I need pain relief. I want to be judged by my abilities and deeds, not by my diagnoses and life expectancy. I dream about traveling… I really like to visit new places! Now I dream of sunny weather so that I can take a camera and go to shoot autumn.
Ludmila Lepesha
Thanks Irina. You have done a lot for the universe. May your days be filled with joy from what you bring to people. Live long and full.
Clara
Well done! Respect for you is huge!, God give you strength, energy and I wish you health, yes, yes health! believe in miracles, but they are - I know for sure, life is unpredictable!
Sergei
Turning to the true God through the son of Jesus Christ will change your thinking, views and life for the better, and the article is motivating and excellent.
bair
Irina, I wish you good luck and luck. Human life is fragile, we, each of us, are a small grain in this world. And no one is safe from anything on this earth. so that every living being lives, finds some kind of happiness, although, as the 24th Pandito Khambo Lama Damba Ayusheev says: “We live in a world of suffering, and it is essentially impossible to wish for happiness, because the world of suffering ”No matter how your desire for a full life is worth a lot .... without pathos.
Ekaterina Dunyushkina
Thanks, Irina.
Thank you for WHAT and most importantly HOW you tell us average mortals.
After all, by and large, there really is no difference between us. We are just each individual. And it is the life of each individual that gives him the goal in life for which he came into this world. And your life is very worthy.
After reading your message, I remember one parable:
A boy is drowning in a pond, a passer-by walks by, rushes into the water and saves the boy.
The boy, having come to his senses, says words of gratitude to the passer-by. And he answers him:
"Don't thank, make your life worth saving."
So are we. Often our life is not even worthy of our birth. We live to work, not work to live.
Once again, thank you. And in response, I wish you more satisfaction from the goals achieved and just from life.
“We don’t know how much time is ahead, so we try not to put anything off until tomorrow»
In Russia, about 180 thousand children annually need palliative care. Only a small part of them receive it. All because while this direction is poorly developed, there are not enough qualified specialists, there is no necessary infrastructure. At the same time, it is possible and necessary to help these children, according to those who develop children's palliative care.
“If a patient cannot be cured, this does not mean that he cannot be helped,” said Vera Millionshchikova, founder of the First Moscow Hospice. Believe in this and those who continue her work today.
Ease suffering for children and give respite to parents
Palliative care is a way to make life easier for terminally ill children, to make it more humane. So that in the life of a child there is no pain and unnecessary suffering. In order for the existence of these children to be, as far as possible, full, high-quality, safe and protected, says charitable foundation director« Children's palliative» Karina Vartanova.
Now the foundation is exclusively engaged in research and educational projects in the field of palliative care for children. And the very first project of the foundation was a mobile children's service, in which doctors, nurses, psychologists and social workers worked. They took care of 120 children in Moscow and the Moscow region. It was one of the first models of field services in Russia, following the example of which services began to appear in different regions of the country.
“Yes, we are dealing with children who cannot be helped by traditional therapeutic methods, but their life can be facilitated and improved, no matter how long it will be: for some it’s a few months, for someone it’s a few days, and some have several years, because the trajectories of diseases in children with palliative diagnoses are very different,” says Karina Vartanova.
We say 'palliative care', not 'palliative care'. Because palliative care is a complex concept, and medicine as such is not as much as it seems. Therefore, when people talk about "palliative medicine", the help inevitably comes down to curative, medical methods of influence. But after all, psychological, social, and spiritual assistance play an equally important role in palliative care.
A small percentage of oncological diagnoses is the main difference between children's palliative care and adults. According to various studies, the number of children with cancer in need of palliative care is 10-20%.
This is due to the fact that today children's oncology is treated quite successfully, notes Karina Vartanova. Everything else is a variety of diagnoses: neurological, metabolic, neurodegenerative diseases, chromosomal diseases, respiratory pathology, and much more.
Help at home
Now there are three forms of existence of palliative care - these are hospices, departments at a hospital and outreach services (help at home), says Ph.D., associate professor, director of scientific and methodological work of the Children's Palliative Foundation, associate professor of the Department of Oncology , Hematology and Radiation Therapy RNIMU them. N.I. Pirogova, head physician of the children's hospice with the "House with a lighthouse" Natalia Savva.
The mobile palliative care service for children includes doctors, nurses, psychologists, and social workers. And this is the minimum set of commands.
Usually specialists come to the house one at a time. The doctor usually has three visits a day. He examines the child, prescribes symptomatic therapy, and talks with parents. This is a very important part of the doctor's work, sometimes such conversations can last several hours. The child may be on a ventilator, in which case the doctor must not only assess the child's condition, but also check the operation of the equipment.
There are four main functions on the shoulders of the children's mobile palliative care service. The first is symptom control. “We remove all the adverse symptoms that interfere with life,” the doctor says.
The second is teaching parents how to care for the child, play with him, and also provide assistance in an emergency. The third function is to help the child at the end of life. When a child passes away, the service accompanies the family. The child is prescribed pain medication. There is a lot of support from psychologists working in such a service. Another task is a “social respite”, when parents can get an assistant for the day from the mobile service, which will free the mother from caring for the child for this time. Mom can go to a children's hospice event, see a doctor, or just sleep. Such assistants - nannies or nurses from field services are in great demand, and they are sorely lacking, Natalya Savva notes.
Outreach services also organize events for parents and grandparents. It can be, for example, a beauty day for moms or family painting workshops. When a terminally ill child has siblings, they also need to be worked on. Therefore, there is a line for psychological support of brothers and sisters.
There are also lawyers who help families. For example, when there were difficulties in obtaining a certain medication. It turns out that the service has a lot of functions, a lot of specialists, says Natalya Savva.
Another very important point is education for a terminally ill child. Many people believe that if a child is terminally ill, then he should stay at home.
“We really want the children to study, to go to school. If the child is very difficult, then there may be education at home, there are distance schools. If a child has completely impaired cognitive abilities, then play therapists select a special program. In any state, the child wants to play, and parents can be taught this,” says Natalia Savva.
"House with a lighthouse" that illuminates the lives of terminally ill children
The direction of children's palliative care in Moscow, for example, covers the Children's Hospice "House with a Lighthouse". The hospice does not yet have a hospital, it is under construction. But the main direction of the "House with a lighthouse" is palliative care at home, and it will continue after the appearance of the hospital.
Thanks to the Houses with a Lighthouse outreach service, about 800 terminally ill children can receive assistance per year. And this is 27 thousand visits of doctors, nurses, psychologists, play therapists, nannies, social workers and coordinators.
Among the wards of the fund are children of different ages, with a large number of diagnoses. For example, little Agatha. The baby was admitted to the intensive care unit on the fourth day of life, and since then she has been constantly connected to a ventilator. Agatha has Ondine's curse syndrome, children with this disease "forget" to breathe at night. The girl was diagnosed early, so there is a chance that she can be switched from a ventilator to non-invasive ventilation of the lungs, and she will sleep in a mask. Bringing Agatha home required a list of expensive equipment, funded by the hospice. Now the girl needs the help of hospice specialists, a play therapist, a nanny, and expensive medicines.
Another ward of the hospice is Leva. The boy goes to an inclusive kindergarten, loves to sing and takes part in all performances. Leva has type 2 SMA. On the street, the boy moves in the Skippy stroller, and around the house - in a special car, which his dad assembled first for him, and then for other children in the Children's Hospice. Lyova also needs the help of hospice doctors and medicines. And there are hundreds of similar stories - where the disease cannot be cured, but it is possible and necessary to help - hundreds.
“Terminally ill children have the same rights as healthy children, and the task of the children's hospice is to give families enough support to continue living a normal life - meet friends, go to work, sleep at home, take children to school, and go to the country in the summer. ”, say the organizers of the House with a Lighthouse.
Photo: House with a lighthouse, barbecue picnic
We do not know how much time is ahead, so we try not to put off anything until tomorrow. And we also love to make dreams come true, they say in the hospice. For example, thanks to the hospice, the dream of eight-year-old Liza, who has an incurable form of cancer, came true. Lisa visited the set of the series "Voronins", which she loves. And another ward, Serezha, met with the player of his favorite CSKA team, Igor Akinfev, and attended a closed training session. Some of the guys talked to their favorite artist, some visited Disneyland, received a coveted camera as a gift, or flew in a helicopter. Some of these children have already passed away, but it is very important that their dream came true.
Photo: “House with a lighthouse”, Lisa on the set of the series
A catastrophic shortage of specialists and the services themselves
As for the problems associated with the provision of children's palliative care, there are many of them. These are funding, the lack of similar institutions that provide such assistance, and the lack of specialists.
The region itself is still quite young. If adult palliative care appeared 20 years ago, then children's care has existed for a little more than six. The very concept of “palliative care” was enshrined in the law only in 2011.
Now there are children's palliative visiting services, hospices. For example, there is a children's hospice in Moscow, St. Petersburg, Kazan, and a hospice has recently opened in Omsk. A children's hospice is being built in Kaliningrad. But this is not enough, says Karina Vartanova.
According to expert estimates, in Russia, about 180 thousand children may need palliative care, of which 9.5 thousand die annually. Some live to the age of 18, some even go into adult service. In Moscow, for example, there are about 3,000 needy children, while about 750 children actually receive home assistance, says Natalya Savva.
Therefore, first of all, not hospices and departments should be created, but outreach services that would help these children and their families at home, the doctor believes. There are very few outreach services.
Government agencies and non-profit organizations can organize field service. It’s good if a state organization is involved in this, because in this case there is stable funding. But finding institutions that would like to do this is difficult, she notes.
“The second problem is a huge shortage of specialists. In order to open centers and services for children's palliative care, trained, certified specialists are needed. And those who have been trained can be counted on the fingers, ”says Director of the Children's Palliative Charitable Foundation.
Fortunately, major changes are taking place in this direction. For example, advanced training departments appeared in Moscow at the Russian National Research Medical University. N.I. Pirogov, she notes.
Starting from 2015, the specialists of "Children's Palliative" regularly, once or twice a month, hold educational seminars in the regions. Pediatricians, resuscitators, neurologists usually gather at such seminars, and where there are services, palliative specialists are sure to come.
We used to think that this would be a very long and difficult process: you start working almost from scratch, many specialists hear the phrase “palliative care” for the first time, recalls Karina Vartanova.
“It seems like it will take a very long time for something to work. Nothing like this. People learn very well, they hear very well. And in many places where there was nothing, palliative services are already working. And that makes me very happy,” she says. And this means that the child does not need to go to Moscow, he can be helped on the spot, and this is very important.
We are not trying to replace the state, but we can initiate change
The role of charitable organizations, which constantly draw the attention of the state to existing problems, in the development of palliative care is very important.
We are not trying to replace the state, it is simply unrealistic, says Karina Vartanova. But we can well initiate the process of change, develop proposals, and contribute to the development of one direction or another.
For example, recently "" received a subsidy from the Moscow Public Relations Committee so that children in boarding schools could also receive palliative care, says Natalya Savva.
Now often such children spend almost their entire lives in hospitals, simply because there are no trained personnel and special medical equipment. Due to the fact that the child is constantly in the hospital, he does not study, he develops social neglect, many associated medical problems develop, she says.
“I really want these children to also be provided with qualified palliative care by mobile services and specialists from residential institutions themselves,” says Natalia Savva.
Now there is support at the level of relevant authorities, and relevant bills are being developed. Recently, the government allocated over 4 billion rubles for the development of palliative care in the regions.
“We really want the process of developing the institution of palliative care for children to take place as quickly as possible, because children get sick here and now, and they also need help here and now. And every new case when a child cannot receive normal assistance is very painful,” concludes Karina Vartanova.