The time will come and there will be no incurable diseases at all, however, now, alas, doctors can not cure everyone. Therefore, an important task of the Fund is to support those people who are in trouble, to provide them with comprehensive assistance. That is why we are in every possible way developing projects of palliative medicine, which can improve the quality of life of incurable patients, especially children, and alleviate the symptoms of their diseases.

As you know, palliative pediatrics is a type of palliative medical care that provides the necessary examination and intervention of doctors, the purpose of which is to alleviate the suffering of terminally ill children. And in this matter, it is extremely important to take into account the physical, emotional and mental state of the kids.

Features of palliative care for children

Patients who receive palliative care need support 24 hours a day, 7 days a week, and therefore the task of doctors is to provide it. Everything matters here: to respond in a timely manner to a change in the patient's condition, to see any problem areas, to provide psychological assistance, to provide all the necessary medications, devices, and also means of care. Of course, this is not possible without close interaction with the patient himself and his family.

Advances in modern medicine make it possible to extend the life of an increasing number of terminally ill patients, but at the same time they remain very dependent on new and often very expensive technologies for its maintenance. This applies to the most severe chronic diseases, both congenital and acquired. In practice, treatment that is aimed at prolonging the life of the child and palliative care are often carried out at the same time. A patient who has experienced a crisis again needs therapy and rehabilitation aimed at prolonging his life, therefore, an individual approach is required for all patients. The Archangel Michael International Charitable Foundation is doing its best to help provide the necessary conditions for sick children in order to alleviate their fate.

Provision of palliative care for children at home

When it comes to caring for a dying child at home, this is certainly possible, but only if palliative care professionals are able to provide assistance at any time of the day. And of course, if other specialists are available, and there is also someone who will be responsible for communication between hospital and outpatient services, individual specialists. If necessary, you should immediately arrange for hospitalization of the patient. It is important to take into account the condition of the parents, their psychological and physical strength, who may need a break. This is necessary in the case of a long-term progressive chronic disease. This is why parents need to make sure they are not left without proper help.

Hospitalization of a sick child

It is worth noting that most patients prefer to stay at home if they are given a choice. Although there are opposite cases, when a desire for hospitalization is expressed. At the terminal stage of the disease, full-fledged palliative care is possible only in a hospital setting, where the work of staff is well organized, and there are no obstacles to caring for the patient.

Also, recently, in many clinics, special attention has begun to be paid to the needs of patients and their loved ones. The schedule of visits to intensive care units has become freer, and there is greater flexibility with regard to mandatory examinations and monitoring of the patient's condition. The philosophy of palliative care, which is provided to children, is successfully implemented in the work of a hospital where all attention is paid to the convenience and quality of life of the patient. Everything that is done for the patient and his loved ones is important to evaluate on the basis of these goals. This is why it is important to carefully select staff who approve of this approach, bearing in mind that palliative care, as well as intensive care, does not have techniques that fit all situations.

As you can see, full-fledged palliative care for children requires the coordinated efforts of a large circle of specialists - both doctors and psychiatrists, social workers, clergymen and volunteers. It is the active activity of each of us that can give a little more time to children and their parents to be together, the opportunity to see a new day. Therefore, the Archangel Michael Foundation calls for cooperation from all who wish to help alleviate the suffering of children.

Maria Rulik:

Hello! With you again the channel "Mediadoktor", the program "Healthy Childhood" and its hosts - me, Maria Rulik, and Alexander Lobanikhin, pediatrician, deputy chief physician of the children's clinic "Child". Hello!

Alexander Lobanikhin:

Good evening!

Maria Rulik:

We are finally back after a long vacation, after a break. And today our guest is a pediatrician, neonatologist Oksana Anatolyevna Monakhova - head of the pediatrics building for newborns and infants of the Filatov Children's City Clinical Hospital No. 13, chief specialist-neonatologist of the North-Western District of Moscow. Hello Oksana Anatolyevna!

Oksana Monakhova:

Hello!

Maria Rulik:

And today we have a rather complicated and difficult topic, which, it seems to me, should be discussed anyway. We will talk about palliative care for children, to whom it is shown, how it is organized in Moscow, Russia and, in particular, in the Filatovskaya hospital. And the most important question, which many people do not really understand for themselves, is what palliative medicine is, what does this term mean? Because for many it is more like a death sentence. What is it and what is included in this concept?

Oksana Monakhova:

Palliative care is the section of help that follows a difficult diagnosis, but after that, life continues. That is, we must make this life easier, continue as far as possible, this is a life without pain to the end, and make it as comfortable as possible for both parents and the child himself.

Palliative care for children is somewhat different from that for adults. First, it differs in the structure of its incidence. That is, if in adult pathology these are mainly oncological diseases, then in the children's structure, oncological diseases occupy about 10-15%, and everything else is genetic diseases, chromosomal severe pathologies, these are injuries, in particular, brain injuries, which subsequently lead to disability, these are severe organic brain lesions, which also lead to severe disability and early death of the child. And this is the life that, from the moment of the diagnosis to the moment of the child's death, it should be comfortable, painless, and parents and some children should be helped to accept this diagnosis when they are already of a conscious age.

Palliative care is the section of help that follows a difficult diagnosis, but after that, life continues. That is, we must make this life easier, continue as far as possible.

Maria Rulik:

When I travel around Moscow, I often come across this poster, if I'm not mistaken, it belongs to some foundation that deals with palliative care, it says that if a person cannot be cured, this does not mean that he cannot be helped. Rather, we are talking about helping to alleviate the condition, or are we talking about some kind of socialization of this child?

Oksana Monakhova:

Both medical and social assistance is provided here. The structure of palliative care, which was created in Russia, is represented by inpatient palliative departments, that is, where medical care is provided, these are medical organizations. There is outgoing palliative care, this is help at home, that is, all the necessary measures are provided at home, psychological and spiritual help - any. And there are also hospices - these are just medical and social institutions that have been aimed at the patient lately.

Alexander Lobanikhin:

That is, when the patient cannot stay at home? And where is this separation - at home or not at home?

Oksana Monakhova:

This is the desire of the parents, for the most part. If they are ready to say goodbye at home, then the child can be at home. Sometimes his life, which can last for several years, can be on a ventilator, and this is also possible at home. Some parents find it difficult to perceive such a situation, so this child may be in a hospice when he does not require active medical manipulations. Well, those who need it should be in the palliative care units for children, that is, in our hospital, in the palliative care unit.

Alexander Lobanikhin:

Does this pediatric palliative care provide psychological support to parents? Or is it a separate area of ​​work with them?

Oksana Monakhova:

It is not separate, it is all very close. All our doctors who specialize in palliative care physicians undergo seminars, webinars in a continuous mode of providing palliative care, psychological assistance - both directed at patients and directed at parents, as well as directed at themselves, because, of course, to work close to death is hard.

Maria Rulik:

You said that palliative care provided to adults and children differs, in particular, in terms of diagnosis, that is, in terms of diseases that arise. We can talk in a little more detail about who is shown such help when it comes to children, and what exactly Filatovskaya Hospital works with most often - with what diagnoses, with what children, what age?

Oksana Monakhova:

Yes we can. Firstly, all patients subject to palliative care are divided into four categories depending on the degree, on the possibility of rehabilitation potential, that is, how much the child's condition can be adjusted, how close the end is. In our hospital, the palliative care department is more focused on children with neurological pathology, and is limited to a few years of age - up to 4 years. In most cases, children come to us at the age of newborn, we assess their condition (visiting medical commission), we come at the request of doctors who suspected that the child will need palliative care and, accordingly, create our own vision. That is, we understand that he needs palliative care, does not need, and we give an opinion. Yes, it does? We are ready to accept this child. No, doesn't it? You can continue to help, it is of a medical nature. We suspect either he needs help in another medical institution, or palliative care, but in a slightly different direction. And when we take the kids to our place, of course, we also offer parents to stay with us.

In our hospital, the palliative care department is more focused on children with neurological pathology, and is limited by age - up to 4 years.

Maria Rulik:

Do you have children with their parents?

Oksana Monakhova:

We offer this opportunity. Unfortunately, many children are already without parents.

Maria Rulik:

Abandoned?

Oksana Monakhova:

These are children abandoned by their parents.

Alexander Lobanikhin:

You said that the doctor determines the indications for palliative care, and then the commission decides whether these indications exist or not. Is this a primary care doctor, a pediatrician, or who are these doctors?

Oksana Monakhova:

Any doctor who works with this child. These are children, in general, rather heavy, and if we go out somewhere with a commission, then we go to hospitals. Initially, such diagnoses are made in a hospital, in intensive care units or in nursing units.

Alexander Lobanikhin:

If the health workers have not guided a specific family to the need for palliative care, can the family go to your department or some other department on its own?

Oksana Monakhova:

Yes, of course, they can contact us with such a request. The child will be admitted to the hospital due to his main illness, and a medical commission will be held in the future. They can also go to the hospice, this is a medical and social institution, it is, for the most part, of a charitable type, supported by the money of philanthropists, there are all the specialists who can also decide on the incurableness of the patient.

Alexander Lobanikhin:

That is, the Filatov hospital, by and large, accumulates not only patients from its departments, but also from other hospitals?

Oksana Monakhova:

We accept other patients.

Maria Rulik:

We say that this happens in clinics. But you have already touched on the fact that there is an outgoing consultative palliative service. Is she needed in order to confirm the need for such help, or does she help in the event that the parents have decided to leave the child at home and take care of him? What is this anyway?

Oksana Monakhova:

This is a fairly versatile help and, for the most part, practical. Parents are in constant contact with the assigned doctor and nursing staff by phone, ask questions, solve the necessary problems. And in the future, if the child needs help, the mother needs help, for example, in setting the probe, that is, she does not succeed, the nursing staff urgently leaves for her, that is, the nurse who works with her helps. There are situations when the help of specialists is needed, for example, a neurologist, a neurologist visits, provides assistance, and consults at home. But this, of course, does not negate the help in the compulsory medical insurance system, that is, the usual help in the polyclinic, when doctors also go to the house and help the child at home.

Maria Rulik:

Is this service also paid for by the OMS? That is, it is for insurance?

Oksana Monakhova:

No, these are different budget systems. Palliative care is included in the local budget, this is help from Moscow. Accordingly, Moscow children can receive such assistance in Moscow hospitals.

Maria Rulik:

How is it organized in our country, how developed is it? We are talking at the moment not only about the Filatovskaya hospital, about your opportunities, but all over Russia.

Oksana Monakhova:

Palliative care services are organized throughout Russia. They may not be in all cities, but in large cities they are everywhere.

Palliative care services are organized throughout Russia. They may not be in all cities, but in large cities they are everywhere.

Maria Rulik:

Can the Moscow Region apply, or do they have their own service?

Oksana Monakhova:

If we have a child with a palliative disease in Moscow and in our hospital, we draw up a protocol for the patient's incurability.

Maria Rulik:

What is incurableness?

Oksana Monakhova:

Inappropriateness is the inability to cure a patient for a given disease, which inevitably leads to death at an early stage. In this case, we are already negotiating with local medical organizations to transfer the child to his place of residence, where he is later transferred to palliative care.

Maria Rulik:

Do you help to find such an opportunity at your place of residence?

Oksana Monakhova:

Maria Rulik:

All the time we hear this terrible word - the suddenness of the death of this child. As far as I understand, in such cases, children should be in the hospital, when it comes to short lifetimes. And in what cases is it decided that the child can be transferred home, and at home he is provided with such a service?

Oksana Monakhova:

When we fully taught the mother to take care of the child, when she can put any probe, clean the airways of the child, she fully provides him with nutrition, that is, she knows how to feed such a special child and acts without the help of medical personnel.

Maria Rulik:

In principle, being in your hospital is not always to the end, it happens sometimes to educate parents so that they can pick up such a child and be with him, perhaps they have older or younger children so that the whole family can be to the end with such a kid?

Oksana Monakhova:

Yes. There is a downside, when the child is in the family, there is the concept of social respite. The palliative care unit also helps with this. When there are older children who at one time need to rest and go to the sea, they cannot take a heavy child with them, then the child is sent for a social respite to the palliative unit, where the medical staff provides full care.

When there are older children who at one time need to rest and go to the sea, they cannot take a heavy child with them, then the child is sent for a social respite to the palliative unit, where the medical staff provides full care.

Maria Rulik:

This is really great because finding such a child is not only stressful for the whole family, but it is very physically difficult for the mother, or for the entire family who provide care. This is 24 hours, as far as I understand, and in constant mode. Tell me, very often I hear, I read on the Internet an appeal for help, fundraising and so on. We indirectly touched upon the topic that if a child needs an artificial respirator, this is expensive medical equipment, which not every family, but rather a few who can afford to buy, you help such patients to purchase, or give out, or somehow you can provide so that the child is not always in the hospital?

Oksana Monakhova:

Can. Our outreach palliative care service is not configured to work with artificial ventilation devices, that is, this is not our direction. But such devices as an oxygen concentrator, an aspirator, something that helps to remove mucus from the respiratory tract, any other medical equipment that children of our profile will need, we give it out. She is, and we provide all the children who are attached to us.

Maria Rulik:

And parents shouldn't buy all these tubes, spare parts for their own money, but can they contact you?

Oksana Monakhova:

Not to us. Parents turn to social assistance services for supplies. These children are disabled since childhood and are fully provided by the state with all consumables, so when they have a disability, they receive everything they need in the social assistance service.

These children are disabled since childhood and are fully provided by the state with all consumables, so when they have a disability, they receive everything they need in the social assistance service.

Alexander Lobanikhin:

Can you ask a question closer to your department? I would like to understand what it is - roughly speaking, the capacity of the department, what kind of specialists are these, what is the profile of the specialists? Because we are now discussing understandable things, but I would like to convey that these are people who learn and know how to work with this profile of patients, because just having received a medical education, if you do not come across such patients every day, you are not such a skill. get it. What is a palliative care unit, what is there, what is not there, what specialists, what would you like, where would you like to move within the framework of your department?

Oksana Monakhova:

We have a Corps of Pediatrics and Neonatal Pathology. In the structure of this building there is a palliative care department. This department is small, designed for 7 beds, and, in principle, we are ready to put all these kids with their parents. At the moment, no parent is with us. Nurses with the qualification and specialty of “nurse in pediatrics for the care of newborns” work with children, and these sisters additionally received training in palliative care, as well as doctors. Initially, these are pediatricians, who later received certificates in neonatology and subsequently received certificates in palliative care or continue their studies. Now almost all training has been transferred to the Internet, and they also attend various webinars or conferences that are dedicated to palliative care.

Alexander Lobanikhin:

Is there an educational base in this direction?

Oksana Monakhova:

Yes, we already have it.

Maria Rulik:

You have repeated several times that palliative care nurses have taken special courses and doctors. And what exactly is included in this training, what is more emphasized? To psychological support when working with such children or psychological support from doctors and nurses themselves?

Oksana Monakhova:

Both. Here, to a greater extent, understanding of palliative care itself, that this is not the end, and to convey to parents that we continue to provide medical care, we are doing everything necessary for the child. We allow him to be in more comfortable conditions, that is, we remove the pain, we remove the same mucus that prevents the child from breathing, we treat his concomitant diseases, realizing that someday this will all end. And all the training is tuned to this, the doctors initially own all the medical manipulations. There is more understanding of how to help such a child.

Of course, if you just put a pediatrician next to an incurable child, he will throw up his hands: I don't know what to do. His kidneys are not working well, he does not understand what is happening, he does not develop at all - how can I help him? Our tests, for example, of this child's urine and blood, are naturally deteriorating, but they deteriorate in terms of the underlying disease, and then we cannot help. Either it is a condition that has joined in connection with the underlying disease. For example, pneumonia has joined, or the trophism of the skin is disturbed, and additional massage is required, treatment, certain child care is required. This is what our palliative care doctors are taught.

Alexander Lobanikhin:

The children you are with now, as you said, are there without their parents. If this is a child with a longer, better prognosis, I believe that these are, in the main, still very young children, if this is not a month, not two, not three, but for some years he can live in one form or another usefulness, do they remain for this entire period in the department, or is there a period of stay and are transferred to another place?

Oksana Monakhova:

In our hospital, the limit is up to 4 years, that is, this child can be with us for 4 years, and in the future it will be transferred.

Maria Rulik:

If we are talking about a very young age, children want to develop, they want to see something bright, touch, play, as much as possible in their state. If we are already talking about an older age, they need much more activity. How can you help with this? Is such care given and is it included in palliative care?

Oksana Monakhova:

Of course, this is included in palliative care. And this is exactly the difference from palliative care for adults. Children need development. Whatever he is, he needs to be taken on handles, and to be stroked, pressed, said an affectionate, kind word, shown toys, given toys to hold, we all have it. Children have different toys and mobiles. Sisters often take them on handles, take them out for a walk. We do not often have, but nevertheless, volunteers come, who go out into the street with the kids in strollers and walk there for a while. Children respond. Despite the fact that not all are developed for their age, these children respond. They sometimes smile, they call, each has its own character. Children are all different, but they remain children.

Alexander Lobanikhin:

We, being students of the medical university, also had a department in Kazan, including a hospital where there was a department of refusenik children, and so doctors always welcomed the presence of students with these children, because, one way or another, the number of nurses and doctors was not Thus, they could not provide the level of social interaction that is needed so that they could develop, because even if there are 3 nurses per department, there are 35 children, for example, and doctors generally need to be treated, to do something else. Do volunteers have access to these children? Where do they come from, and how can you become these volunteers?

Oksana Monakhova:

In order to become a volunteer, you need to be at least healthy, have a medical record, have all vaccinations and contact the management of our hospital with this. We always welcome volunteers and are glad to have them with us. Here they come to the aid of the sisters. Of course, to come for 1-2 times is some help, but a little not the same. The children become attached, and the sisters are somewhat jealous of this. Therefore, they can give someone a walk, but someone not (I will go myself, that is, this is my child who has been lying for years). Of course, they are attached, and the sisters work in shifts, they always work, taking the same children, so the children know their nurses.

In order to become a volunteer, you need to be at least healthy, have a medical record, have all vaccinations and contact the management of our hospital with this. We always welcome volunteers and are glad to have them with us.

Maria Rulik:

Do you train volunteers too? Because the desire to come and help is one thing, but it's difficult. Here, not every person who does not have children can take a baby in his arms. If you bring a baby to your dad from the hospital, it won't take him right away. And here we are talking about a child with some peculiarities: something cannot be done at all, somewhere it will hurt him, if you take it wrong, somewhere you need to notice some sign when he needs help, when you can no longer cope , but you need to call a nurse or doctor. Are they undergoing some kind of training?

Oksana Monakhova:

No, they are not trained, they are under the constant supervision of medical personnel.

Maria Rulik:

They are not alone?

Oksana Monakhova:

Don't stay.

Alexander Lobanikhin:

It is important that volunteers need to understand that you are taking on some kind of patronage, that is, it should not be 1-2 times, and you just need to make a medical book, be healthy, and if people have a need to help, this is possible.

Maria Rulik:

But you also need to understand that if you came for the first time and realized that you are not able to repeat this constantly, then you need to find the strength to confess, and not try again, again, and then quit, because you need to think not only about yourself, but also that you will leave there a child who will feel some kind of affection for you and want to see you. Well, the same nurses who are jealous for a reason, because they perform this work from year to year and really on the basis of human rights, who, almost like a mother to this baby, have the right to decide who I will let in and who not. This, it seems to me, is a very difficult topic, because many adults do not understand what volunteering is, they think it is so easy and they want to help so much, but in fact it is very hard work, like the work of nurses who work with such children, and doctors.

Oksana Monakhova:

Therefore, of course, you need to decide. That is, we always look at how close such an action is for a given person. Very often they refuse to work with such children, moving on to relatively healthy newborns, who will soon be able to go home or to an orphanage.

Maria Rulik:

I also heard that there is such a vacancy in several hospitals - it is to be a mother for a newborn baby, to take him more in her arms, to feed him, because there are not enough nurses, and a nurse, among other things, must provide medical assistance.

Oksana Monakhova:

Not "apart from", this is her first function.

There is such a vacancy in several hospitals - to be a mother for a newborn baby, to take him more in her arms, to feed him, because there are not enough nurses, and a nurse must provide medical assistance.

Maria Rulik:

Most often, a nurse is a woman, and, of course, her heart breaks when the baby cries, when he is uncomfortable, in pain, but she cannot take everyone in her arms. I have already told you this story, that earlier in the Bakulevskaya hospital in the neonatal department, children were taken away - the parents had no right to be there, that is, they gave the child and further down the list they watched how the operation went, and then the doctors reported when it was possible to pick it up, then there is already after discharge it was possible to pick up the children. So, women nurses did not work in this department, nurses worked there. And one chief nurse was a woman - aged, with a fighting character, I think she could lead a regiment. And the nurses, because the women really could not stand it, and the boys somehow got along more smartly with the children. I can't say that they took it easier, but they endured all the hardships more easily and coped very skillfully. Maybe it makes sense for you to adopt - you need to take nurses? And physical strength can also come in handy - take out the stroller, lift a heavy child.

Oksana Monakhova:

Sick children are of low weight. Our sisters are due to the fact that they are mothers themselves, that is, their attitude towards children is precisely maternal, and we appreciate this to a greater extent. Still, nurses with faster decision-making work well in intensive care, and not where it is necessary to nurture children, that is, slowly and motherly.

Maria Rulik:

Agree with you.

Alexander Lobanikhin:

Let's get back to such a concept as children with the potential for rehabilitation. The child is on palliative care, but at some point we understand that this child suddenly becomes either curable at this stage, or the period of his departure is postponed for an indefinite number of years. Are there such children?

Oksana Monakhova:

Yes, such children have a place to be. To begin with, when we recognize them as incurable, we mean 4 categories. These are children with life-threatening diseases, but with some potential. For example, when carrying out a radical operation, it may or may not work. Until the child reaches this surgical intervention, then it will already be clear whether to continue palliative care, or the child may already be withdrawn from palliative care and will continue to develop, not differing much from his peers.

Alexander Lobanikhin:

But will he have some kind of socialization?

Oksana Monakhova:

Maria Rulik:

But their only socialization is being not somewhere out there, far away, but still with their parents. It is difficult to ask such a question - do these children feel? They do not develop, but do they feel care and love, touches and kisses of their parents?

Oksana Monakhova:

They feel, and this is very clearly noticeable. When parents come, the child changes, his gaze changes, he opens his eyes, looks, but the gaze is not meaningful in children with such a pathology. In principle, when parents come, they behave in a completely different way - we see it. They have a different voice, their movements are different, that is, the feeling that they are happy.

Maria Rulik:

You, too, see the difference between those children who are undergoing treatment without parents, and those children whom you supervise at home, who are with their parents, with their family. Let them sometimes bring you to the hospital in order to rest, and in order to undergo the same medical examination with their own older and younger children, or for themselves. Is there a difference between these children?

Oksana Monakhova:

As you understand, we have a very small palliative service, and therefore I will definitely say that there is practically no difference. Our children, who are in our hospital, in our palliative department, are loved, and they feel it.

Our children, who are in our hospital, in our palliative department, are loved, and they feel it.

Maria Rulik:

But for these children, whatever the diagnosis, whatever the speed of the final, even doctors cannot predict exactly when this will happen. And, as you say, sometimes it happens that life expectancy increases, sometimes unexpectedly, and for doctors as well. The child is showing his own inner potential. All the same, this can be seen from this child, that he feels good - from the fact that he is at home, from the fact that he is loved, from the fact that they are with him. And parents should understand this, that it is important - important for the child, important for the parent himself, as the feeling that you give a child with disabilities and life expectancy everything that you would give to a healthy child.

Oksana Monakhova:

Alexander Lobanikhin:

To be honest, even 10 or 15 years ago in our country in relation to such children, in relation to such people, they would say: why is this necessary?

Maria Rulik:

It would rather be the responsibility of the parents alone.

Alexander Lobanikhin:

I just understand that in this direction, which you are developing, you need to have a certain mentality in order to come in this direction, because I perfectly understand what kind of separation it is, what you can experience there, what emotions. It now has a certain development, a certain stage in our country. Initially, probably at the administrative level, then the medical community perceived it differently. But as far as I know, this philosophy has come to us already in some ready-made form from abroad. At what stage are we now in relation to the whole world, what is our potential, and how much do we want to move forward?

Oksana Monakhova:

We want to move, development is going on. Probably very briefly: such a palliative movement has been launched in Russia since 1993, we have just begun, we have the potential for development in terms of, for the most part, transferring palliative care to home. Yes, society is not quite ready to accept such children, and therefore we have a palliative care unit of an inpatient type and hospices, where this care is provided not for short time intervals, as in other countries, but for a longer period. But everyone decides for himself, because this is quite hard parental work - caring for such a child. Therefore, we have something to strive for, this is to ensure that the hospice is at home, that all the necessary specialists come to the child, so that all children who need it are covered. To do this, we need to continue working with society, so that they can be accepted, so that they understand that palliative care is not the end, it is help that must be accepted in order for your child and yourself to feel more psychologically comfortable. And plus physical support, that is, this is the staff who comes and helps to do something at home, the same medical procedures.

Maria Rulik:

It is also important that parents understand that, having found themselves in such a situation, who really stayed with their child, did not refuse and continue this path, they are not alone. Because you provide psychological help, and the person sees examples of what is happening with you, he knows that he can come and learn, he can come and leave the child, for example, for a week, to have his own life. It is very important in such a situation to understand that you are not alone. Perhaps, meetings are arranged, parents can get to know each other, and when they come to you, communicating with your doctors, they can exchange contacts, support each other. It is very important to understand that you are not alone with this grief. And each parent should understand that he will be helped, that there is where to turn, there are specialists who are ready to talk and physically provide assistance, including medication, even in a situation when it seems that there is no way out.

Alexander Lobanikhin:

I would even say that parents should mature to the point that this gap is not grief or trouble, this is life, just a little different, but grief and misfortune will still happen.

Maria Rulik:

And you can be ready for this.

Oksana Monakhova:

You need to prepare for this, but at the same time continue to live a more fulfilling life. We have mobile palliative services, hospices, and charitable foundations that help and arrange holidays for such children. There are volunteers who help these kids go to the pool. That is, children on artificial lung ventilation leave and swim in the pool with their parents, then they are also returned home. This is a great event, a great holiday for these kids.

Alexander Lobanikhin:

These are the good fellows. On a positive note, we will finish such a difficult event.

Maria Rulik:

Thank you very much. And I hope that we have made a little positive contribution to this topic. Thank you very much again for such a story.

Oksana Monakhova:

Thank you for the opportunity to tell.

According to the definition of the World Health Organization, palliative care is active all-round care for incurable patients, primarily relief of pain and other painful symptoms, psychological, social and spiritual support, the purpose of which is to improve the quality of life of the patient and his loved ones.

Palliative care for children is carried out in hospitals, where sometimes there are departments specialized for this care, at home (if possible, and the patient and his relatives want it) or in hospices. Hospices have a range of palliative care services that are funded and supported to work together. In some countries there are special hospices for children, which are different from those for adults who receive children from time to time, and represent an important link between hospital and home care.

Palliative pediatrics- a type of palliative medical care, provides the necessary examinations and medical interventions aimed at alleviating the suffering of terminally ill children. The same principle applies to palliative care for children as to pediatrics in general - an approach to the physical, mental and emotional state of a child and its development based on the concept of maturity, but in conditions of palliative care it has to be applied to patients who die before reaching adulthood. age. Many narrow specialists also encounter this group of patients, so knowledge of the theoretical and practical foundations of palliative care is often even more necessary for them than for general pediatricians. In addition, mastering them (the skills of psychotherapy, pain relief and elimination of other painful symptoms) is useful in other areas of pediatric practice.

Differences in palliative care for children from traditional care for adults in the terminal stage of oncological diseases are as follows.

Fortunately, the number of children dying is small, so general pediatricians and specialists in certain branches of pediatrics are faced with the death of their patients relatively rarely. Due to the relative rarity of death in childhood, palliative care services for children are poorly developed, and there are few scientific studies devoted to its scientific justification.

The circle of incurable diseases that lead to death in childhood is large, therefore, specialists of different profiles have to be involved in the assistance. In adults, regardless of the etiology of the disease in its terminal stage, the experience and scientific substantiation of palliative care in oncology is often successfully used. In pediatrics, this is not always possible, since among the incurable diseases there are many poorly studied, to which it is impossible to extend the experience gained in a certain narrow field.

The course of many diseases in children is unpredictable, so the prognosis remains uncertain. It is often impossible to predict exactly how quickly a fatal disease in children will progress. The uncertainty of the future keeps parents and children in constant tension. In addition, one service rarely succeeds in providing palliative care for children. Usually, care for patients with incurable chronic diseases is provided by several services, the spheres of activity of which to some extent overlap with each other, and only in the terminal stage palliative care as such becomes of leading importance.

In many cases, it is unclear whether treatment will lead to recovery or remission and prolong life, or whether it should only be considered supportive and palliative. Deciding whether treatment prolongs life or has only a palliative effect has become not always possible with the availability of methods such as non-invasive mechanical ventilation (ALV) without intubation or a tracheostomy tube.

Medical advances make it possible to prolong the life of an increasing number of terminally ill children, but at the same time they remain largely dependent on modern, often very expensive technologies for its maintenance. This applies to the most severe chronic diseases, both congenital and acquired. In practice, life-prolonging treatment and palliative care are often carried out at the same time. A child who has survived a severe, almost fatal crisis again needs rehabilitation and therapy aimed at prolonging life, so it is unacceptable to approach all terminally ill children with one yardstick.

Palliative care planning

It is often impossible to determine how long a terminally ill child is left to live. In addition, the parents will realize the hopelessness of the situation much later than they make a judgment about the poor prognosis. It is important to use this time gap to prepare parents for the informed decisions they need to make when their child's life comes to an end. Given some predictive uncertainty, which even with an undoubtedly poor prognosis persists in children, it is advisable to ask parents whether they want resuscitation measures to be carried out, in what conditions it is desirable for them to organize caring for a child in the last days and hours of his life, to assess how much he needs pain relief and relief from painful symptoms. It is more convenient for the child and loved ones to resolve these issues with doctors who treat him for a long time. The primary care physician or specialist pediatrician and their nursing staff are always advised by palliative care specialists or hospice staff when needed. The doctor should not put off talking to parents on the pretext that he is embarrassed. By delaying or shifting it onto the shoulders of colleagues, he will only complicate matters. He should try to put himself in the shoes of the parents, understand their feelings, think over all the arguments for and against certain decisions: do the parents have enough material opportunities and skills to organize care in the last days of the child's life, do they need a break, do they require care other family members, which is more expedient - to leave the patient at home, to be hospitalized or placed in a hospice.

Full care of a dying child at home is possible if palliative care professionals can provide assistance at any time of the day, if other specialists are available and a person is identified who is responsible for liaison between hospital and outpatient services and individual specialists who can organize hospitalization of the patient or help if necessary parents who need a break. The latter is especially important in the case of a long-term progressive chronic illness, when, in order to give the parents some rest, the child has to be hospitalized, placed in a caring family or hospice. This opportunity should be provided before the parents' powers are exhausted. Parents must be sure that they will not be left without help. Most chronic patients prefer to stay at home when given a choice, but sometimes, even with full-fledged home care, children express a desire to be hospitalized or placed in a hospice for some time.

Full-fledged palliative care for children in the terminal stage of an incurable disease in a hospital setting is quite possible if the work of the hospital is organized flexibly enough and does not create obstacles for caring for the dying. The largest number of children die in intensive care units for newborns and older children of multidisciplinary patients. In most such cases, shortly before the death of the child, it is necessary to decide whether it is advisable to continue therapy aimed at prolonging life, or, on the contrary, to limit or stop it. Recently, hospitals have begun to pay more attention to the needs of patients and their loved ones - they have made more free visits in intensive care units, they have begun to show more flexibility in relation to research and monitoring that is mandatory for all patients in the intensive care unit. The philosophy of palliative care for children is being successfully implemented in the work of a hospital where the main attention in care is paid to its convenience for the patient and the quality of life of the latter. Everything that is done for the patient and his loved ones should be considered on the basis of these goals. At the forefront should be the question of what to do to make the patient easier and more comfortable, and not what type of treatment to stop. Staff who accept this approach with understanding and approval should be carefully selected, bearing in mind that palliative care, as well as intensive care, does not have a one-size-fits-all approach. In addition, full-fledged palliative care for children requires the coordinated efforts of many specialists - doctors, nurses, psychologists, social workers, and sometimes the participation of clergymen and trained volunteers.

The article was prepared and edited by: surgeon

These are medical measures aimed at alleviating the conditions of patients with incurable diseases accompanied by severe pain. The approach improves the quality of life of patients.

Palliative care is indispensable for both people with mental and physical disabilities.

This approach has several features:

• Considers death as a normal process, but creates conditions for the struggle for life.
• It is not aimed at prolonging or shortening the life of the organism.
• Aimed at relieving pain and being able to lead an active lifestyle.
• Consists in providing support to the patient's family.

Targets and goals

One of the main goals is to help critically ill people at home and maintain the desire for life.

When treatment in a hospital is ineffective, a person is left alone with his illness and fears. For later life, it is necessary to stabilize the emotional state of the person himself and those close to him.

Tasks:

1. Pain relief and relief of painful sensations.
2. Psychological support for the patient and loved ones.
3. Developing a healthy attitude towards death.
4. Meeting spiritual needs.
5. Solving the problems of medical bioethics.

Development history in Russia

The word "palliative" itself is derived from the Latin "pallium". In translation, it means a veil, a cloak.

In a broad sense, it is characterized by protection from adverse influences and the provision of comfort. In a narrow sense, it is focused on creating appropriate conditions for people who, according to medical forecasts, will not have long to live.

The origins of palliative care go back to nursing homes, hospices, almshouses, orphanages. They arose during the Middle Ages in churches and monasteries. Special people were responsible for caring for incurable patients. It was only in 1843 that such establishments were divided according to their goals.

In Russia, the first mentions date back to 1682. Then Tsar Fyodor Alekseevich ordered to create a spitalnik, special hospitals for the poor and seriously ill.

Modern palliative medicine took shape during the second half of the 20th century. At first, they talked about her only in relation to cancer patients.

In 1987, on the basis of M.N. P. A. Herzen created one of the first offices to provide assistance to patients with severe pain. In 1994, a palliative care unit was opened at Moscow City Hospital No. 11. Today there are 130 structural divisions in various regions. Another 58 are in the process of formation.

Concepts and principles of palliative care for adults and children

Palliative care is provided on an outpatient basis, in the mode of a round-the-clock or day hospital.

Responsibility for its timely provision lies with the state, health authorities, and public institutions.

Clinics aimed at helping patients with incurable diagnoses are being set up at many hospices and hospitals.

In them:

• monitor the general health of the patient,
• prescribe medications
• issue referrals to inpatient medical institutions,
• refer patients for consultation to doctors,
• advise,
• carry out measures aimed at improving the emotional state of the patient.

When working with children, the condition of the parents is also taken into account. The main task is to provide opportunities for full communication, ensuring the baby is in a good mood.

Since babies feel pain several times more acutely than adults, the main principle is to use any legal methods aimed at alleviating the general condition of the patient.

Palliative care for adults and children is based on the principles of observance of moral and ethical standards, respectful and humane treatment of the patient and his relatives.

Organization

These services are provided by state, municipal and private health systems. Information to the patient is communicated by the attending physicians and using any other sources.

Palliative care offices interact with various charitable, volunteer and religious organizations.

A doctor who has completed special training courses and a nurse work in such an office. Under the new rules, the day hospital does not provide for palliative care. Most patients receive it at home or within the walls of hospitals.

Referral to medical offices providing such assistance is carried out by doctors of hospices, visiting nursing services, doctors of palliative offices. If there is no histologically confirmed diagnosis, then the referral is issued by the decision of the medical commission.

Patients

There are three groups of patients for whom palliative care is provided in full. Sick:

• 4 stages,
• AIDS in the terminal stage,
• progressive diseases in the terminal stage of development.

Often, clients are patients with diseases in the stage of decompensation and inability to achieve remission, patients with the consequences of cerebrovascular accident, with irreversible injuries, degenerative diseases of the nervous system.

Palliative care for cancer patients

Maintaining an acceptable level of quality of life is the most important task in oncology. Adequate living conditions are being created.

In a hospital setting, patients who cannot completely cure the ailment are manipulated to alleviate severe symptoms.

For example, if radiation therapy relieves severe pain, then palliative chemotherapy is aimed at shrinking tumor tissue. It allows to reduce intoxication with tumor metabolic products.

The main principles of working with cancer patients are:

• psychological support,
• balanced diet,
• correction of disorders of the digestive system,
• fighting pain.

Palliative at home

When the treatment is completed, but the disease progresses, the best solution is to get help at home. Specialists from the service arrive on schedule or on a call from relatives, the patient himself.

If necessary, powerful pain relievers can be used in the process.

The patronage nurse can visit the child on her own or do it in conjunction with the doctor. The work takes into account the mental and physical condition of the patient. Active therapeutic measures are carried out only if the patient wants it.

Hospice

In a hospice setting, palliative work is carried out not only by medical personnel, but also by volunteers. The patient is sent to an institution for measures aimed at relieving pain and reducing shortness of breath.

The main indications for getting help are:

1. The need to search for methods and conduct adequate treatment.
2. Carrying out actions that cannot be carried out at home.
3. Lack of relatives who could provide assistance at home.

Center in Moscow

The center was organized on the basis of the Order of the Moscow Healthcare Department No. 106 in 2015. The task is to provide palliative care to patients at home, in a hospital. The implementation of modern methods of improving the quality of life of patients is being carried out.

Services are provided both under a medical policy and for a fee. Primary care is organized on a territorial-district basis.

The center consists of a hospital for 200 people, a branch of the visiting patronage service. The main direction of work is to provide assistance to incurable patients with progressive diseases and to ensure continuity in the work of institutions that provide such assistance.

Video about the types of palliative care for incurable patients:

Palliative care for children

Palliative care for children in the modern world is a separate medical specialty and a separate area of ​​medical and social activity. This direction is just beginning to develop in Russia. To create an effective system of palliative care for children in our country, it is necessary to understand the differences from palliative care for adults, an analysis of world experience in organizing palliative and hospice care for children and the specifics of Russian healthcare.

Palliative pediatrics, which has existed in the world since the 70s. XX century, is currently developing as a unique and separate from adult palliative medicine service with a broad approach to symptom control, psychosocial, spiritual and practical assistance and has already shown the ability to significantly alleviate the suffering of terminally ill children and their families. Over the 30 years of its existence, palliative pediatrics has undergone colossal development and accumulated an impressive evidence base, but it is still not widely implemented even in those countries where it is already being formed as a separate medical specialty.

Features of palliative care in pediatrics

Palliative Pediatrics is an active and holistic approach to caring for a seriously ill and dying child, including physical, emotional, social and spiritual elements of care. She is committed to achieving the quality of life of a child with a life-threatening or life-shortening illness and family support, including eliminating and managing symptoms, providing respite and caring for family members after death during a bereavement period (Association for the Support of Children with Life-Threatening and Terminal Conditions and families, Royal College of Pediatrics and Child Health). This definition sounded the key concepts of palliative pediatrics - Life-limiting illness (a disease that shortens life) - a condition that leads to the premature death of a child (up to ~ 40 years old or until the death of his parents), and Life-threatening illness (a disease that threatens life) - a condition in which, without aggressive treatment, which is dangerous in itself, there is a high risk of death.

The goal of palliative pediatrics is to achieve the best quality of life for patients and their families, in accordance with their values ​​and regardless of where the patient is located.

On the one hand, this broad definition articulates the goals that should ideally be set by any clinician in contact with a child and his family, regardless of diagnosis, threat to life or other circumstances. But still, where the prognosis for life is limited by a life-threatening disease, the emotional and spiritual state of all family members throughout the child's life becomes even more important.

Palliative pediatrics is a subdivision of palliative medicine and inherits from it the basic principles and approaches in providing care to terminally ill patients. However, it is possible to list a number of features that determined the need to separate this area into a separate service and a separate clinical specialty. Let's take a look at some of them.

1. Children die much less often than adults, especially in developed countries.

Over the past century, advances in medicine have brought under control many of the diseases that in previous centuries made child death a constant threat and a daily reality. These are primarily children's infections and their complications - scarlet fever, measles, whooping cough, diphtheria, acute rheumatic fever. Modern society in developed countries takes the rarity of child deaths for granted, although the transition from the familiarity of child death to its exclusivity occurred in just one century.

Nevertheless, children and young adults continue to die from severe, debilitating diseases - malignant tumors, cystic fibrosis, neurodegenerative diseases. Although these cases may seem rare on a society scale and sometimes a modern person may never face the death of a child from a serious illness in his entire life, these children and their families certainly suffer and need help.

2. The spectrum of diseases in pediatric palliative medicine differs from that in adults.

Diseases of children that determine the need for palliative care represent a wide spectrum, including rare conditions, sometimes genetically determined, often with concomitant disabilities in physical and intellectual development. There are 4 main groups of conditions that determine the need for palliative care:

• - life-threatening diseases in which a cure is possible, but there is a possibility that treatment will be unsuccessful (for example, malignant neoplasms, organ failure);
• - conditions in which premature death is inevitable, but there is intensive treatment that can affect the course of the disease, increase life expectancy and allow the child to participate in social life (for example, cystic fibrosis, Duchenne muscular dystrophy);
• - progressive diseases, in which at present there are no methods that can affect the natural course of the disease, for which palliative measures have been developed that can ensure life for many years (some mucopolysaccharidoses, Batten's disease);
• - irreversible, but not progressive conditions that cause severe disability and susceptibility to diseases leading to premature death (severe forms of post-infectious, post-traumatic organic lesions of the central nervous system, for example, cerebral palsy).