Today, June 24, marks her 9th since the death of Zhanna Friske. For two years she was struggling with a terrible diagnosis – brain cancer. When we talk about cancer, we often mean only the patient, about what he has to go through in the struggle for life, but do not forget about those who are nearby. Friske’s death revealed one important problem – how and how to help relatives who have one of the family members sick. After all, they need no less support.
“I admit that loved ones worry even more than the patient,” Dmitry Shepelev told Woman’s Day. – Those who help a sick person to overcome a difficult test, in fact, need no less support. A psychologist should be assigned to everyone who is in the hospital next to a person diagnosed with cancer. In terms of importance, their services should be equated to that of therapists, surgeons and pharmacies. This is the lion’s share of success in the fight against the disease. There is no such practice in Russia, and if there is, it is not developed properly – in our country, psychologists are treated too cautiously. In vain. People most often have no choice but to be alone with their own fears, helplessness and some idle, conventional wisdom about this disease. “
Woman’s Day talked about this issue with Natalia Mikhailovna Rivkina, head of the EMC Clinic of Psychiatry and Psychotherapy.
How to present the news to the patient and relatives? What advice do you give to relatives on how they should behave with the patient?
The family is part of the healing process. But with the consent of the patient. At the very first meeting, we ask the patient which family members you are willing to initiate into the situation. Relatives receive the same degree of support and attention as the patient, and it is very important that the whole family is in the same frame of reference and understands what is happening with the patient. Otherwise, it happens that one family member offers to go to Germany, another says that you need to go to church and go through the rituals, the patient himself wants to stay in his country. And this stressful situation can affect the patient’s mood.
We have separate meetings for relatives, at which we teach how to properly communicate with the patient. We talk about what the patient experiences at all stages of treatment and in each case individually, relying on their family relationship, we find a way to behave correctly. For one person, it is important to be held by the hand, stroked on the head and spared. For another, it is important that the topic of the disease is not touched upon, that they do not demonstrate empathy too vividly. The main thing is that the family understands what the patient is experiencing emotionally and physically, and can adequately assess this and help doctors with their observations.
In Russia, it is often customary not to tell the diagnosis to the patient, first of all to inform his relatives, in the West, on the contrary. In your opinion, which option is better? Or does it all depend on the character of the patient, his attitude to the disease?
In some countries, there are still problems and heated discussions about whether or not a patient should be informed of the diagnosis of cancer and other life-threatening conditions. But most countries have a clear position on this issue. And not even just a position, but a whole system of teaching doctors how to communicate traumatic information to patients. Moreover, doctors are trained in these skills at universities. Undoubtedly, direct communication of information to the patient’s forehead, without taking into account his emotional characteristics, life history, the nature of his illness, can be extremely traumatic for the patient. And so shocking that patients can refuse treatment.
We know for sure and there is a huge amount of research in the world that prove that patients who are not informed about their disease are much more likely to develop depression and anxiety disorders. And this can have an extremely negative effect on treatment and aggravate the prognosis. This is a fact already proven by science. Over the past 40 years, there has been a huge amount of research on this topic, especially in America and Europe. In many ways, the increased level of anxiety is due to the fact that when patients are near other patients, in a family that is informed, one way or another understand that something is happening to them. And their fantasies about this topic can be much more frightening than what happens in reality. And we often in our practice faced a situation when the family insisted that the diagnosis be hidden from the patient, and he, in turn, secretly from the family came to the attending physician and asked to inform directly what was happening to him.
In our center, as in many countries of the world, we provide information to the patient to the extent that he would like to have it. Some say, “I don’t want to know anything about my diagnosis and prognosis.” Others want to know everything 100%, in all details. And then the issue will be discussed with them very directly and openly. It is very important that this is a conscious choice of the person, and we show respect for the patient. Scientific research shows that patients who receive constructive, meaningful information about what is happening to them and their predictions are much less susceptible to stress reactions, anxiety disorders and more calmly go through the various stages of treatment.
– Is an appointment with a psychotherapist appointed by the attending physician or is it an initiative of the patient himself?
This is the desire of the family and the patient. Around the world, the so-called scale of distress is used, which helps to show the level of maladjustment, a high level of development of anxiety or depression, and is an absolute signal that a person needs additional support. Unfortunately, in Russia it is used only in certain places, for example, in our clinic.
In Germany, the level of psycho-oncological service coverage of clinics is very high. In America, this will be very different from state to state. In New York, it’s from district to district. There are countries where this is supported by the state, and then the level of representation of psychologists and psychiatrists in oncology clinics is much higher. In the largest clinic in New York, Memorial Sloan Kettering Cancer Center, psychiatry is a huge separate clinic. The staff of psychiatrists there is 25 people. There, even oncologists have the skills to identify mental disorders. They go through training programs without fail.
In fact, in addition to emotional support, psychiatrists also provide great help in the treatment of pain, nausea, and eating disorders, which can be a side effect of chemotherapy. Many psychotropic medications can help manage nausea. Antidepressants enhance the effects of pain medications.
– There is an opinion that belief in recovery is half of the cure. How true is this statement, in your opinion? And is there any scientific evidence for this fact?
Unfortunately, in our country there are still excesses in the idea that cancer is associated with psychoemotional factors, that it occurs in people who have experienced stressful situations, that this is the so-called psychoemotional reaction. Which has already been absolutely proven that this is not the case. But since these ideas still exist, there are also ideas that with the right attitude, with hypnosis procedures, auto-training or visualization techniques for this tumor, which you need to imagine and try to get rid of, you can be cured. In this globally, of course, there is nothing wrong, because it cannot harm a person. But some patients may refuse treatment, relying on such psychological methods. This is, of course, a tragic path. Because it has already been absolutely proven that oncological diseases are biological diseases, and they are not associated in any way with reactions to stress and require certain treatment. And the work that psychologists do is supportive work aimed at preserving the quality of life, but not getting rid of the disease. Therefore, faith in recovery, a positive attitude, it supports a person on the path, helps to endure difficulties more easily, but it is not a healing factor in itself. Many patients, living in such beliefs, if they experience a relapse of the disease, accept it as their own defeat, and this is a very painful process. We do our best to ensure that patients have a positive but realistic attitude.
– And what instructions do you give to the patient himself?
For me, a positive attitude is an opportunity to live in reality: a person understands what is happening to him and makes realistic plans, in the interval that doctors can assume. This period may be 40 years, and it may be 6 months. I saw patients completing their affairs, meeting with someone with whom they were in a quarrel, doing what they did not have time to do before. It is very important for a person to forgive someone during this period, to say “I love” to another …
– Now on the Internet you can find information on any disease, there are many forums where people share their personal experiences. Is this for the benefit of the patient or do you advise not to read such information, because it often does not correspond to reality?
Unfortunately, in Russia, many sites related to medicine are not reviewed by doctors. And this applies not only to oncology. When working with patients, even with the usual form of depression, the first thing I ask is: “Please do not go online. Swear you will not check your prescriptions online. ” Because there is a lot of information that does not correspond to reality. This also applies to the diseases themselves and the methods of treatment. People write that cancer is a death sentence, chemotherapy is an unbearable procedure with an endless list of side effects. But in fact there is no such disease “cancer”, there is a huge number of diseases of the oncological spectrum. And they, even being of the same localization, are extremely different from each other. Just because one woman with breast cancer describes a personal experience on a blog does not mean that her experience has anything to do with another woman who has fallen ill. Of course, whenever possible, we try to protect patients from information that is not only not useful, but also poisonous. We recommend the websites of official clinics to patients, because they exist with the participation and support of doctors, and they provide adequate answers to questions.
– How many meetings should be held with relatives and patients during treatment?
The first part is psychoeducation – a format when everything that happens to him is discussed with the patient in much more detail than was discussed with the doctor. The patient has the opportunity to ask all the questions that interest him, from the causes of the disease to the methods of treatment. This is not psychotherapy yet, but a very important part. In Germany, for example, all patients are required to complete this stage. It can vary from three to ten meetings. This is done so that patients do not have false ideas that can maladjust him.
Beyond that, dealing with stress responses is important. Some people need antidepressants. We then meet with such patients once a week to monitor the dosage. Typically, this treatment lasts at least 2 months.
Next, an important stage, which we have absolutely missed in Russia, is the stage of the formation of remission. When a person actually recovers and, as our patients say, “all doctors lose interest,” and people experience loneliness and fear of the disease returning. After undergoing chemotherapy, people sometimes experience many cognitive problems – difficulties in concentration, attention, forgetfulness, absent-mindedness, it is extremely difficult for them to return to work and they sometimes do not even understand what it is connected with, they think that this disease has crippled them so much. In reality, all they need is cognitive training that will restore all functions. The remission stage is an extremely vulnerable period that requires attention. All over the world there are special programs that deal with patients in remission. It can be a course of 10 appointments, or it so happens that doctors have been in contact with the patient for years.
These patients are taught what it is to control their disease. Because just to tell a person, you are not afraid of anything, this is a stupid phrase. It is important for patients to understand that they are related to a specific doctor.
Help is needed, of course, both at the stage of relapse, when the disease has returned, and at the stage of transition to palliative treatment, when we finish active treatment, because there are no more tools to cope with the tumor process itself, but we have the tools to maintain quality the patient’s life. At this stage, most patients experience despair and disappointment in doctors, they believe that some kind of treatment mistakes were made. And here a great skill of the doctor is required in order not to lose touch with the patient and to support him.