From the author: Konstantin Yatskevich, a specialist at the Minsk City Center for Palliative Care and Organization of Nursing, spoke about the palliative care service at home in an interview with the correspondent of the online agency ET CETERA Elena Chetvernya. November 26, 2009 ET CETERA (Health)As far as I know, the term palliative care is not known to many people today, what does it even mean? The concept of palliative care comes from the Latin word pallium, which literally means “cover” or “cloak” in the sense of a means of covering or protecting with some kind of symbolic blanket. In other words, this is the environment of a seriously and terminally ill person from all sides with guardianship and care, and such a patient who has practically no chance of recovery. Those. Palliative care is all currently known ways to reduce the burden of suffering and improve the quality of life of a terminally ill patient through funds, medical, social, psychological and spiritual assistance, as well as creating the most healthy and comfortable environment for the patient in his place of residence. Those. In palliative care there is no talk of cure at all? Yes that's right. In palliative care there is no talk of a cure, it is only about improving the quality of life and prolonging survival. Although, you know, occasionally there are still exceptions to this rule, but these are only exceptions, and they are always joyful, completely unpredictable, exciting, and they can literally be counted on the fingers of one hand. Just imagine, doctors give a verdict to a person - hopeless, due to the seriousness of, for example, a traumatic brain injury. The patient's so-called vegetative state, roughly speaking, it becomes a “living plant” with tubes protruding from almost all natural orifices. The prognosis is a slow decline, and after three to four months the patient is already standing on his own feet, eating independently and even going to the toilet. Isn't this a miracle? And such cases also happen in our practice, but in the overwhelming majority, unfortunately, we are dealing with hopeless and passing patients. Your center, as far as I know, specializes in providing care at home, but what are the general specifics of this type of palliative care? In the world today there are quite a few types, or rather models, of palliative care. This includes assistance in the inpatient setting of a medical institution, for example, the same hospice, this is assistance in a day hospital where patients are brought for procedures, these are emergency surgical pain relief services, these are mobile home care services, these are weekend services, temporary stay centers, specialized nursing homes, etc. Our center specializes in providing care to patients at home. This type of assistance has its own specifics and is in great demand in Minsk today. Firstly, not all patients want to spend the last days of their life in a hospice, but at home, as we know, walls help. Secondly, this is the most socialized type of assistance, in which assistance is provided without changing the patient’s usual environment and social environment. In addition, home care is also an economically viable area of ​​activity that does not require large investments and has continuity of social services with medical ones. A separate aspect is social prevention in dysfunctional families. After all, we sometimes have to apply administrative measures to irresponsible adult “children” and asocial persons who abandon their sick and infirm elderly to the mercy of fate. What type of patients do you most often have to deal with? There are quite a lot of people in need of palliative care in Minsk. According to clinic data, as of January 1, 2008, their number was 2,279 people. As of January 1, 2009, according to the lists of clinics, there were about 2,500 people in need of various types of palliative care, and lists are still being received. Of course, not all of them need a stationaryhelp, but the majority need some type of specialized medical, social and psychological assistance. We currently work only with five main categories of patients. These are patients with chronic diseases of the circulatory system, having the 1st disability group, patients with chronic cerebrovascular diseases, having the 1st disability group, HIV/AIDS-infected patients in stage V of the disease, patients with traumatic injuries, having the 1st or 2nd -th disability group, as well as patients with IV clinical group of cancer. We work with cancer patients mainly to treat bedsores, since specialized oncological palliative care in our city is provided to them in an adult hospice, which is headed by Olga Viktorovna Mychko, the best specialist in pain management in the republic. In percentage terms, patients with cerebrovascular diseases and diseases of the circulatory system predominate, then geriatric patients, patients with severe traumatic brain injuries and spinal injuries. The general structure of the capital's palliative care looks approximately like this: up to 40% are cancer patients, more than 60% are all other nosologies. In terms of age composition, the vast majority of our patients are gerontological or age-related patients. Tell us how and when your center was founded, how many people work in it? Our center operates at the 5th City Clinical Hospital of Minsk, or more precisely, it is a structural division of the hospital. The center was created on the basis of the project "Mobile Hospice for Adults", which operated from 04/01/2005 to 10/1/2006. The initiators of this project were the Belarusian Children's Hospice, represented by its director A.G. Gorchakova, the Health Committee of the Minsk City Executive Committee, represented by the head of the department of medical and preventive care N.M. Predko and the 5th City Clinical Hospital represented by chief nurse N.K. Zagorodny. The order No. 61 on the creation of the Center was dated February 9, 2007. So we will soon be three years old. The work of the center is managed by the chief nurse of the 5th City Clinical Hospital, Nonna Konstantinovna Zagorodnaya. Today, our center employs 13 employees, including nurses, a palliative care doctor and a specialist in psychological and social work and information technology - your humble servant. Today there are 157 active patients under the care of the center, i.e. requiring active assistance. Tell us a little about your work, how does the process of providing home care work? Our center has a telephone hotline with an answering machine. We accept applications from those in need both by calling 296 44 38 and centrally in the form of lists from outpatient clinics in Minsk. As I already said, today we have received lists from almost all clinics in Minsk. There are about 2,600 people in need of medical and social assistance. The procedure for accepting the center's care is extremely simple. To do this, the legal representatives or relatives of the patient must write a statement and then fill out a referral at their clinic, provided that the patient is a disabled person of the 1st group, has a corresponding disease and indications for taking under guardianship. After this, we contact the patient and set a date for the initial visit. The first visit is always attended by a palliative team consisting of: a doctor, a nurse and me, as a specialist in psychological and social work. The doctor and nurse are engaged in purely medical manipulations and procedures, and my functions include examination and assessment of the socio-psychological status of the patient and the climate in his environment, as well as counseling relatives and helping them create the most comfortable environment, both social, psychological and spiritual. The quality of life of a seriously ill patient largely depends on this situation. What, in your opinion, most influences the quality of life of terminally and seriously ill people? A lot influences - and qualitymedical care, and the social and everyday environment and the emotional, psychological and, of course, spiritual atmosphere in the patient’s family. It is curious that the medical aspect of care is not always decisive and determines the quality of life. Of course, in some cases the medical aspect is the main one, as a rule, when there are corresponding medical problems - pain, severe and chronic diseases, wounds and injuries, extensive bedsores, trophic ulcers, etc., requiring regular procedures. But, at the same time, there are a large number of situations when the social and everyday environment and the emotional and psychological atmosphere in the family of a terminally ill person play a decisive role. This applies to the majority of traumatic patients and disabled people - spinal patients who have preserved cognitive sphere and vital resource. They suffer the most from social instability and emotional cruelty. In some cases, the spiritual factor plays a decisive role. As a rule, this concerns people who are in terminal stages, feel the approach of death and experience existential suffering. Human suffering is generally a complex category that has many components, and in each specific case one must be able to identify the main components of suffering. The quality of assistance depends on how correctly they are defined. This, in my opinion, is the essence of palliative care. Yes, now I understand better why teamwork is so important in palliative care. Tell me, doesn’t the fear of death weigh heavily on seriously ill people the most? Speaking of older people, no, in a number of cases, strange as it may seem. The fear of death in many seriously ill patients, who have a relatively intact cognitive sphere, transforms over time into other forms of suffering. Many seriously ill people, on the contrary, themselves want death to come closer and thereby end their suffering, that’s the problem. It is not so much death itself that is scary, but its painful anticipation. It is what causes the greatest suffering, and my task is to create conditions for their possible reduction, and this can be done mainly through psychological and spiritual methods. If I understand you correctly, many terminally ill patients would be willing to use euthanasia if it were legalized? How do you personally feel about euthanasia? I think that before the legalization of euthanasia, we, as a society, had not yet matured and had not matured according to many criteria, and first of all culturally, morally and spiritually. In our republic we do not yet have our own “Law on Palliative Care”, even in the capital there is still no system of care for the elderly, seriously and hopelessly ill people, there is not a single specialized nursing home, but there are many prejudices and negative stereotypes. Those. We do not have a palliative culture and a hospice tradition, we have no experience in this work, and we are already aiming at the final phase of this type of care - euthanasia as an “easy death.” First, you need to create a system of care and assistance for seriously and hopelessly ill people, and only then, based on the experience of this work - working with suffering and death, explore the problem of euthanasia. Foreign experience convincingly shows that with developed palliative care, the need for euthanasia decreases significantly, and vice versa - if the palliative care system is not developed, then the number of suicides and requests for euthanasia increases. By the way, I was very alarmed by the message of the interfax.by agency dated May 11, 2009: “Elderly Minsk residents began to leave to die in nature.” This is just the first “bell” that we need to develop the direction of caring for the elderly, lonely and seriously ill people. Personally, I am not opposed to euthanasia, provided there are appropriate conditions and prerequisites, but, in my opinion, they will not exist in the foreseeable future, and therefore there is no point in talking about it now. Let's learn to die like a Christian. How do you personally feel about death? Personally, I have a philosophical attitude towards death, especially after I myself lost my parents. NotI remember who said that parents separate a person from the gaze of eternity. And having lost his parents, a person himself stands before eternity, which peers into him. This is exactly what I felt and realized after they left. We are all mortal, but not everyone thinks seriously about this during their lifetime, and, moreover, not everyone lives with this awareness. In palliative care, death is an integral element of the work and the “technological process,” so to speak, unfortunately, and in this regard, I think that nothing sobers a person and disciplines him more than the awareness of approaching death. At the same time, almost every person with an incurable and fatal disease goes through a certain period of struggle with thoughts about the inevitability of death. Thanatology, the science of death, describes five stages that a person’s consciousness goes through before death. The first is the stage of denying one's own death. The second is anger at the inevitability of death. The third is attempts to flirt and trade with death. The fourth is the stage of depression from the intractability and inexorability of death. Fifth – the stage of humility and... leaving. From experience I can say that the most effective means of helping patients in recent days is not so much psychological as emotional, mental and spiritual help. I try to provide this to our patients as much as possible. Those. can you combine psychological help with spiritual help? Why not? I have already told you that the difficulty of palliative care is that it is a multidisciplinary field of activity for fairly mature people with experience and diverse knowledge. That is why my task is to help a person and alleviate the degree of his suffering in any available way, except for euthanasia, of course. That is why there is no contradiction in the fact that an individual approach is applied to each person. With an atheist I speak one language - the language of psychology - one that is close and understandable to him, but with a believer I can speak in a different language - spiritual. Excuse me, of course, but aren’t there elements of deceit and lack of sincerity in this? After all, these are completely different types of help, in addition, to provide spiritual help you need to have clergy or at least the blessing of a priest? There is no deceit or insincerity in this. There is only stereotyped thinking and the desire to classify everything, but in life, fortunately, everything is mixed in one “soup”. It always saddens me to see when people associate spirituality purely with church paraphernalia and ritualism, often excessive. It’s even sadder to see blinding religious fanaticism against the backdrop of intransigence to other opinions. Spirituality does not live in the church or in religious rituals, it lives in the human heart and in the human soul. Spirituality is the light of the human soul, almost in the literal sense, which can be shared and illuminate some spiritual space, that’s all. And you can only share what you have. This is the main principle of any help. If you have love, then you can share it with someone, if you have knowledge, you can share it with someone, if you have light in your soul, you can also share it. But you cannot share with others what you yourself do not have. And it doesn’t matter to me what you call my help - purely psychological, purely spiritual or mixed, I simply share what I have and what a person needs at the moment. I don’t have any clergy, I’m “just” a believer, but I have the blessing of two priests at once, representing, very symbolically, different confessions: Father Andrei, a priest of the Belarusian Greek Catholic Church, and Father Nikolai, the Vladyka’s personal secretary , Metropolitan of Minsk and Slutsk Philaret. But this is not the point, but the fact that palliative care generally involves a multi-confessional approach, because among seriously ill people there can be not only Christians, but also Muslims, Jews, Buddhists and representatives of other religious movements anddenominations. This is why spiritual work in the field of palliative care should not be mono-confessional or narrowly orthodox. Among our patients, naturally, the majority are Orthodox. That is why in spiritual work we are helped by workers of the rapid response service of the social department of the Minsk diocese - sister of mercy Claudia, as well as volunteers Vladimir and Andrey. I’ll tell you quite seriously - it is spiritual help, and not medical care, that is, perhaps, the basis of all palliative care throughout the world. Maybe I’m not formulating my question quite correctly, but what is the most difficult thing in your work? The hardest thing is to see human suffering and pain, both of the patient and his loved ones. It's impossible to get used to this. What is most paradoxical is that in some cases it is the patient’s close people and relatives who experience greater suffering than the patient himself, who, for example, has an unpreserved cognitive sphere or is in a vegetative state. That is why the object of palliative care is not only the patient himself, but also his entire family. A family is almost in the full sense of the word a living organism, living its own emotional and spiritual life. And when you enter the apartment of another patient, from the threshold you feel that aura, that emotional and spiritual atmosphere that reigns in the family of a seriously ill patient. In one case, it is an incomprehensible weight that falls on you as soon as you have time to cross the threshold; heaviness from everything - from the stale air, in which the smell of feces, mold, and sometimes decaying flesh is clearly felt; the weight of clutter and dilapidation of the once warm family hearth, in which life was seething just recently, but now there is disorder, like in an old barn. But what is most acutely perceived is not the meagerness of the situation, not the collapse and neglect of the home, which is characteristic of the apartments of many of our patients, but the lack of spirituality, in the atmosphere of which there is continuous suffering, pain and hopelessness. That's what's hardest. It is this heaviness floating in the air that falls on you like a lead slab in some apartments from the very threshold and literally shackles you throughout your entire body. When going into the apartment of a seriously ill patient, you, of course, first of all try to focus your attention on the patient himself and his problems, as well as the problems of the whole family, but as you work, you seem to involuntarily assess the situation as a whole and look for some explanation for the situation that has arisen . Strange as it may seem, you almost always find them, and above all, in human lack of spirituality. The apartment seems to have everything you need for care, but somehow everything is wrong. And the patient’s bed is not in the right place, there are not many necessary accessories, there is not enough light and fresh air, etc. Then your gaze, as if by itself, switches to the cultural environment, and here, in confirmation of your intuition, you discover that there is not a single spiritual book in the apartment, not a single image or icon. Those. There is not a single sign indicating that the holy spirit or God in any of its manifestations is honored here, but there is only material rubbish, some kind of medicine and human pain, or rather, the pain of the incorruptible human soul, which is surrounded by complete decay and darkness. But in other apartments for some reason this heaviness is not present, even despite the same, and sometimes greater, poverty. It seems to be the same problem, the same pain, suffering and hopelessness, but only without the touch of this leaden heaviness and stuffiness, but with some kind of spiritual warmth, with the presence of some completely simple human sincerity and care. This is not at all flashy and, at first glance, insignificant, concern about how the patient’s bed is located, how handrails or limiters are attached to this bed, where and how the light is located, what drugs and medications are used. Even if there are no expensive medicines, then there are some simple folk remedies, there is some kind of comfort for the patient. But what is most important is that in such an apartment there are always signs of the presence of the human spirit and faith, no matter what. These signs are also spiritual.