THERE WAS such a case: one of the pillars of Russian radiology brought pictures of the lungs to a friend and colleague and asked him to carefully analyze them. The doctor studied them for a long time and carefully. Then he shook his head and said sadly: “You can see for yourself that there is nothing you can do to help this man - he has cancer. By the way, do I know him?” “You know,” the visitor answered just as sadly, “it’s me...”
The TRADITION of hiding the diagnosis of an oncological patient as a military secret came from Soviet medicine. There were reasons for this: whether you know that you have cancer or not, you will still be treated as expected. The current Minister of Health of Russia, Yuri SHEVCHENKO, shares the same opinion. Today in Russia there is no single approach to the question of whether to tell the truth. Doctors look closely at the patient for a long time before they risk revealing at least partially the secret of his illness. Unfortunately, we patients are very often not ready to accept the truth about ourselves.
Why do our oncologists try not to tell a cancer patient his true diagnosis? Because they are afraid for the patient - that he will go crazy, die of a heart attack, suffer from clinical depression... They are afraid - and rightly so: the truth for an oncology patient can be worse than metastases. If modern science has learned to treat cancer, it is not yet in its power to prevent suicide caused by cancer phobia.
The word heals and cripples
STILL 20 years ago, cancer was not a diagnosis. Cancer was a death sentence. Everyone always died from it, except for the rarest cases of spontaneous remission, described by Solzhenitsyn in “Cancer Ward.” But about 15 years ago, doctors learned to defeat first skin cancer, then breast cancer, then childhood leukemia (blood cancer)... Since then, the successes of oncology can only be compared with a breakthrough in space: hundreds of women, after curing uterine cancer, gave birth to healthy children. In Russia, thyroid cancer (consequences of Chernobyl) has been successfully treated for a long time, even in advanced stages. In general, malignant neoplasms at stages I and II are cured in 90% of cases while maintaining a high quality of life.
This optimistic information is not a secret at all. On the contrary, oncologists disseminate and promote it in every possible way. The result is often the opposite: patients willingly believe that Ivan Ivanovich died of cancer, but the fact that Pyotr Petrovich was cured of it is ignored. This is the paradox of public consciousness: medicine has gone far ahead, but it, this consciousness, is at least 10 years behind. And he still considers any form of cancer incurable and fatal. The result is paralysis of the will, which makes the patient not an ally of the doctor, but an ally of the disease.
The terrible news affects almost everyone in the same way: half develop deep depression. A person tries to find someone to blame for the fact that he is the one who got sick, and he finds it. Less often he blames himself, more often he blames those around him (why did I get sick and they didn’t?). Then comes the second phase of the reaction. Despair is replaced by hope: a person either does not believe that he really has cancer, or, on the contrary, passionately believes in the attending physician and trusts in the possibilities of modern medicine.
To each his own
In the United States, concealing the exact diagnosis of cancer patients was abandoned in the early 50s. The opinion of doctors was taken into account, if at all, then in the very last place. Americans, obsessed with protecting their own rights, were guided by the following consideration: the patient has the right to decide, not because his decision is more reasonable, but because it is his decision.
How does an oncologist behave in Europe or the USA? He invites a patient to his place, sometimes not alone, but with close relatives, and says something like this: “Don’t be alarmed, good sir, you have cancer. It’s best to immediately perform an operation that will cost so much. In this case, your insurance company will be able to pay only two-thirds of the required amount. There are other treatment plans: chemotherapy, radiation therapy. These measures will provide you with 10 years of quality life and can be fully covered by your health insurance. Choose..."
Essentially, this is a conversation between two business people - the seller and the buyer of medical services. Even if the subject of the transaction is the health and life of one of them, negotiations take place in a business environment, without fainting or wringing of hands. Once, Soviet oncologists were close to fainting when their Western colleagues invited them to such a conversation between a doctor and a patient.
What if the doctor hides the true diagnosis? It turns out that this is not always for the good. By believing the sweet lie, the patient can calm down and refuse to stay in the oncology clinic. A third of cancer patients in Russia today do just that - refuse radical treatment. At the same time, representatives of the most delicate field of oncology - children's - insist that their young patients must be informed of the true diagnosis. In this case, as the staff of the Oncological Research Center named after. Blokhin, children tolerate difficult treatment more easily and interact well with doctors.
So to share medical confidentiality with a patient or not to share? Our doctors know better - that’s why they are our doctors. But life often throws out such tricks that no treatise on professional ethics will help. What should a doctor do if he knows for sure that a new expensive drug will help his patient? And the doctor knows just as accurately: the patient does not have money for this medicine. Where to get funds is the main medical secret of Russia at the end of the twentieth century!
The editors thank Academician of the Russian Academy of Medical Sciences V. A. Chissov, Professor S. L. Daryalova, Dr. honey. Sciences I.L. Khalifa for the information provided.
Anna Ushakova
Oncopsychologist, “Clear Morning” service for cancer patients.
How to support someone who has just been diagnosed?
At the moment when a person is diagnosed, the support and presence of a loved one nearby is important, so the first thing to do is to listen. But you need to listen sincerely, and not formally. The main message: “I hear you, I understand that you are scared, I will help.” Perhaps you just need to sit next to him, hug him, cry together, if this is appropriate - that is, share the excitement, let him speak out and not deny the person’s feelings.
It is very important not to overwhelm you with advice: “I looked on the Internet,” “my friends told me,” “I need to urgently go to Germany,” and so on. This can be very annoying, so advice should be at the request of the person himself. The maximum that can be done in this sense is to offer to read something with the wording “if you are interested.”
A person should feel that he has support, that they are not moving away from him, that they are not afraid of getting infected through dishes, towels, clothes
When a person first learns about the diagnosis, he has a lot of things to deal with urgently: find a doctor, medications, a place where he might have surgery. He may be depressed, and then he may need help just to go buy food. But you need to ask about this so as not to do a disservice and not to impose.
As for information, it should be taken only from trusted sources. There are many different sites, tricks and lures from people who are incompetent in this. For example, healing, homeopathy and so on.
How to talk correctly with a person who has cancer?
Each family has its own rules of communication, so a lot depends on the situation. I think that you need to start the conversation with yourself, talking about your feelings: “I feel that it’s hard for you. Can I help?" You should also try to maintain the same relationships that you had before the illness. A person should feel that he has support, that they are not moving away from him, that they are not afraid of getting infected through dishes, towels, or clothes.
How to cope with the illness of a loved one yourself?
Almost every person whose relative has cancer is very worried. Often he experiences even more than the patient himself, because he is in some kind of vacuum.
You need to immediately look at the resources of your loved ones: if you have someone to talk to, share the burden, that’s very good. We tell our relatives that on the plane they ask you to put a mask on yourself first, and then on the person sitting next to you. If a relative who is caring for a sick person is himself exhausted, on the verge of a nervous breakdown, then he will not be able to provide any quality assistance to the sick person. In general, you need to allow yourself to rest a little, be distracted, and share your feelings with another person.
Perhaps by refusing treatment a person wants to check how important he is to his relatives, whether they are afraid of losing him
Next, psychological support is important. We encourage you to call the support line and talk to a psychologist, because the conversation itself is therapeutic. A person shares his pain, dumps his emotions - like in a container. Also, a relative of a cancer patient can tell the psychologist about what is really forbidden - for example, he is angry with his mother because she is sick and dying, and this irritates him. The family will misunderstand this, but the psychologist gives a non-judgmental perception of the situation and complete acceptance of the person who needs support and support. A psychologist can also give practical recommendations to reduce anxiety and fear.
What to do if a person with cancer refuses treatment?
Such cases occur quite often - a lot depends on the person’s psychotype and the support they receive. If this happens, we advise relatives to tearfully beg the patient to continue treatment for their sake, and also to show how much they love him, how they want to see him next to them and fight together.
Some patients give up because they understand that treatment is a long journey and there will be a lot of things along the way. Perhaps by refusing treatment a person wants to check how important he is to his relatives, whether they are afraid of losing him. In this case, you need to turn to all your spiritual qualities and show the person’s value to himself.
Behind the words “I’m going to die soon” there are always some other words that the person would like to tell you
We also need to figure out what is behind this - perhaps these are myths and fears. As a rule, patients have the sad experience of the death of loved ones under similar circumstances, and this should be carefully discussed and information aimed at reducing these fears should be conveyed. Here, it is important to consult a psychologist who will help you look at the situation from different angles and work with those fears that prevent you from gaining confidence in your abilities and in treatment.
But still, a person’s life is in his hands, and the choice always remains his. We can ask and plead for a long time, but if a person has made such a decision, we must sincerely listen to him and try to understand. In this case, you will have to leave some responsibility on the patient himself.
How to talk about death?
The topic of death is very often taboo. This is a subtle, intimate moment. Nowhere are they taught to talk about death, and much depends on how it was lived in the family when older relatives died.
Behind the words “I’m going to die soon” there are always some other words that the person would like to tell you. Maybe he wants to ask for something - for example, help him complete something unfinished. It is very important to listen to the person and understand what he really wants to convey. Perhaps he dreams of just going to the sea and watching seagulls fly. So do it! Have a dialogue and don't close yourself off. It is very important.
“A woman calls me and says: “The doctors have diagnosed my mother with cancer. How can I tell her about this?! She doesn’t know anything,” says a psychologist, cancer patient, and founder of the “Live” group for helping people with cancer, about a case from her practice. Inna Malash.
Inna Malash. Photo from the archive of the heroine of the publication.
“I ask: “How do you yourself feel as you experience this event?” In response, he cries. After a pause: “I didn’t think I felt so much. The main thing was to support my mother.”
But only after you touch your experiences will the answer to the question appear: how and when to talk to your mother.
The experiences of relatives and cancer patients are the same: fear, pain, despair, powerlessness... They can give way to hope and determination, and then return again. But relatives often deny themselves the right to feelings: “This is bad for my loved one - he is sick, it’s harder for him than for me.” It seems that your emotions are easier to control and ignore. After all, it is so difficult to be around when a loved one is crying. When he is scared and talks about death. I want to stop him, calm him down, assure him that everything will be fine. And it is at this point that either intimacy or distance begins.
What cancer patients really expect from their loved ones and how relatives can avoid ruining their lives in an attempt to save someone else’s is in our conversation.
The best thing is to be yourself
— Shock, denial, anger, bargaining, depression — loved ones and the cancer patient go through the same stages of accepting the diagnosis. But the stages during which the cancer patient and her relatives live may not coincide. And then the feelings enter into dissonance. At this moment, when there are no or very few resources for support, it is difficult to understand and agree with the desires of the other.
Then relatives are looking for information on how to “correctly” talk to a person who has cancer. This “right” thing is necessary for loved ones as support - they want to protect a loved one, save them from painful experiences, and not face their own powerlessness. But the paradox is that there is no “right” one. Everyone will have to look for their own, unique way of understanding in the dialogue. And this is not easy, because cancer patients develop a special sensitivity, a special perception of words. The best thing to do is to be yourself. This is probably the hardest thing.
“I know for sure: you need to change your treatment regimen/diet/attitude to life - and you will get better.”
Why do loved ones like to give such advice? The answer is obvious - to do the best - to keep the situation under control, to correct it. In fact: family and friends who are faced with the fear of death and their own vulnerability, with the help of these tips, want to control tomorrow and all subsequent days. This helps to cope with your own anxiety and powerlessness.
Giving advice on treatment, lifestyle, nutrition, relatives mean: “I love you. I'm afraid to lose you. I really want to help you, I’m looking for options and I want you to try everything to make it easier for you.” And the cancer patient hears: “I know exactly what you need!” And then the woman feels that no one takes her wishes into account, everyone knows better what to do... As if she were an inanimate object. As a result, the cancer patient withdraws and withdraws from loved ones.
“Be strong!”
What do we mean when we say to a cancer patient “hang in there!” or “be strong!”? In other words, we want to tell her: “I want you to live and overcome the disease!” But she hears this phrase differently: “You are alone in this struggle. You have no right to be afraid, to be weak!” At this moment she feels isolation, loneliness - her experiences are not accepted.
Photo: blog.donga.com "Calm down"
From early childhood, we are taught to control our feelings: “Don’t be too happy, no matter how much you have to cry,” “Don’t be afraid, you’re already big.” But they are not taught to be close to someone who is experiencing strong emotions: crying or angry, talking about their fears, especially the fear of death.
And at this moment it usually sounds: “Don’t cry! Calm down! Don't talk nonsense! What have you got into your head?”
We want to avoid the avalanche of grief, but the cancer patient hears: “You can’t behave this way, I don’t accept you like this, you’re alone.” She feels guilty and ashamed - why share this if those close to her do not accept her feelings.
“You look good!”
“You look good!”, or “You can’t even tell that you’re sick” - it seems natural to compliment a woman who is going through the ordeal of illness. We want to say: “You are doing great, you are still yourself! I want to cheer you up." And a woman undergoing chemotherapy sometimes feels after these words like a malingerer who needs to prove her poor health. It would be great to give compliments and at the same time ask how she really feels.
"Everything will be fine"
In this phrase, it is easy for a person who is sick to feel that the other person is not interested in how things really are. After all, a cancer patient has a different reality; today he faces uncertainty, difficult treatment, and a recovery period. Relatives think they need positive attitudes. But they repeat them out of their own fear and anxiety. The cancer patient perceives “everything will be fine” with deep sadness, and she does not want to share what is in her heart.
Talk about your fears
As a kitten named Woof said: “Let’s be afraid together!” It’s very difficult to be frank: “Yes, I’m very scared too. But I’m close”, “I also feel pain and want to share it with you”, “I don’t know how it will be, but I hope for our future.” If it’s a friend: “I’m really sorry this happened. Tell me, will you be supported if I call or write to you? I can whine and complain.”
Not only words, but also silence can be healing. Just imagine how much it is: when there is someone nearby who accepts all your pain, doubts, sorrows and all the despair that you have. Doesn’t say “calm down”, doesn’t promise that “everything will be fine”, and doesn’t tell how it is for others. He's just there, he holds your hand, and you feel his sincerity.
Photo: vesti.dp.ua Talking about death is as difficult as talking about love
Yes, it’s very scary to hear from a loved one the phrase: “I’m afraid to die.” The first reaction is to object: “What are you talking about!” Or stop: “Don’t even talk about it!” Or ignore: “Let’s go breathe better air, eat healthy food and restore white blood cells.”
But this will not stop the cancer patient from thinking about death. She will simply experience this alone, alone with herself.
It is more natural to ask: “What do you think about death? How do you feel about it? What do you want and how do you see it? After all, thoughts about death are thoughts about life, about time that you want to spend on the most valuable and important things.
In our culture, death and everything connected with it - funerals, preparation for them - is a taboo topic. Recently, one of the cancer patients said: “I’m probably crazy, but I want to talk to my husband about what kind of funeral I want.” Why abnormal? I see this as caring for loved ones - the living. After all, that same “last will” is what the living need most. There is so much unspoken love in this - it is as difficult to talk about it as death.
And if a loved one who has cancer wants to talk to you about death, do so. Of course, this is incredibly difficult: at this moment, your fear of death is very strong - that’s why you want to get away from such a conversation. But all feelings, including fear, pain, despair, have their own volume. And they end if you speak them out. Sharing such difficult feelings makes our lives authentic.
Photo: pitstophealth.com Cancer and children
It seems to many that children do not understand anything when loved ones are sick. They really don't understand everything. But everyone feels, picks up on the slightest changes in the family and really needs explanations. And if there are no explanations, they begin to show their anxiety: phobias, nightmares, aggression, decreased performance at school, and play computer games. Often this is the only way for a child to convey that he is also worried. But adults often do not understand this right away, because life has changed a lot - there are a lot of worries, a lot of emotions. And then they begin to shame: “How are you behaving, mom is already feeling bad, but you...”. Or blame: “Because you did this, mom got even worse.”
Adults can distract themselves, support themselves with their hobbies, going to the theater, meeting with friends. But children are deprived of this opportunity due to their limited life experience. It’s good if they at least somehow act out their fears and loneliness: they draw horror films, graves and crosses, play funerals... But even in this case, how do adults react? They are scared, confused and do not know what to tell the child.
"Mom just left"
I know a case where a preschool child was not explained what was happening to his mother. Mom was sick, and the disease progressed. The parents decided not to traumatize the child, rented an apartment, and the child began to live with his grandmother. They simply explained to him that his mother had left. While mom was alive, she called him, and then, when she died, dad returned. The boy was not at the funeral, but he sees: grandma is crying, dad is not able to talk to him, periodically everyone leaves somewhere, is silent about something, they moved and changed kindergarten. How does he feel? Despite all the assurances of my mother’s love, there was betrayal on her part, a lot of anger. Strong resentment that he was abandoned. He feels the loss of contact with his loved ones: they are hiding something from him, and he no longer trusts them. Isolation - having no one to talk to about your feelings, because everyone is immersed in their experiences and no one explains what happened. I don’t know what happened to this boy, but I was never able to convince the father to talk to the child about his mother. It was not possible to convey that children are very worried and often blame themselves when incomprehensible changes occur in the family. I know this is a very difficult loss for a young child. But grief subsides when it is shared. He didn't have such an opportunity.
Photo: gursesintour.com “You can’t have fun - mom is sick”
Because adults do not ask children about how they feel or explain the changes at home, children begin to look for the reason within themselves. One boy, a junior in school, only hears that his mother is sick - he needs to be quiet and not upset her in any way.
And this boy tells me: “Today I played with my friends at school, it was fun. And then I remembered - my mother is sick, I can’t have fun!”
What should you tell your child in this situation? “Yes, mom is sick - and it’s very sad, but it’s great that you have friends! It’s great that you had fun and will be able to tell your mom something good when you get home.”
We talked to him, 10 years old, not only about joy, but about envy, about anger towards others when they do not understand what is wrong with him and how things are going at home. About how sad and lonely he gets. I felt that I was not with a little boy, but with a wise adult.
“How are you behaving?!”
I remember a teenage boy who heard somewhere that cancer was transmitted by airborne droplets. None of the adults talked to him about this or said that this was not so. And when his mother wanted to hug him, he stepped back and said: “Don’t hug me, I don’t want to die later.”
And the adults condemned him very much: “How are you behaving! How cowardly you are! This is your mother!
The boy was left alone with all his experiences. How much pain, guilt towards his mother and unexpressed love he had left.
I explained to my family that his reaction was natural. He is not a child, but not yet an adult! Despite the man's voice and mustache! It is very difficult to cope with such a great loss on your own. I ask my father: “What do you think about death?” And I understand that he himself is afraid to even say the word death. What is easier to deny than to admit its existence, one’s powerlessness in front of it. There is so much pain, so much fear, sadness and despair in this that he wants to silently lean on his son. It is impossible to rely on a frightened teenager - and that’s why such words came out. I really believe that they were able to talk to each other and find mutual support in their grief.
Cancer and parents
Elderly parents often live in their own information field, where the word “cancer” is tantamount to death. They begin to mourn their child immediately after they learn his diagnosis - they come, are silent and cry.
This causes great anger in the sick woman - after all, she is alive and focused on fighting. But she feels that her mother does not believe in her recovery. I remember one of my cancer patients said to her mother: “Mom, go away. I didn't die. You mourn me as if I were dead, but I am alive.”
The second extreme: if remission occurs, the parents are sure that there was no cancer. “I know, Lucy had cancer - so she went straight to the next world, but you pah-pah-pah, you’ve already been living for five years - it’s as if the doctors made a mistake!” This causes great resentment: my struggle has been devalued. I went through a difficult path, but my mother cannot appreciate it and accept it.
Cancer and men
Boys are raised to be strong from childhood: not to cry, not to complain, to be a support. Men feel like fighters on the front line: even among friends it is difficult for them to talk about how they feel because of their wife’s illness. They want to run away—for example, from the room of the woman they love—because their own emotional container is full. It is also difficult for them to meet her emotions - anger, tears, powerlessness.
They try to control their condition by distancing themselves, going to work, and sometimes drinking alcohol. A woman perceives this as indifference and betrayal. It often happens that this is not the case at all. The eyes of these seemingly calm men betray all the pain that they cannot express.
Men show love and care in their own way: they take care of everything. Clean the house, do homework with your child, bring your loved one groceries, go to another country to get medicine. But just sitting next to her, taking her hand and seeing her tears, even if they are tears of gratitude, is unbearably difficult. It’s as if they don’t have enough safety margin for this. Women need warmth and presence so much that they begin to reproach them for callousness, say that they are distant, and demand attention. And the man moves away even more.
Husbands of cancer patients rarely come to see a psychologist. Often it’s easy to just ask how to behave with your wife in such a difficult situation. Sometimes, before talking about their wife’s illness, they can talk about anything - work, children, friends. It takes time for them to start talking about something they really care deeply about. I am very grateful to them for their courage: there is no greater courage than admitting sadness and powerlessness.
The actions of the husbands of cancer patients who wanted to support their wives aroused my admiration. For example, to support their wives during chemotherapy, husbands also cut their hair bald or shaved their mustaches, which they valued more than their hair, because they had not parted with them since they were 18 years old.
Photo: kinopoisk.ru, still from the film “Ma Ma” You cannot be responsible for the feelings and lives of others
Why are we afraid of the emotions of a cancer patient? In fact, we are afraid to face our experiences that will arise when a loved one begins to talk about pain, suffering, fear. Everyone responds with their own pain, and not with the pain of someone else. Indeed, when a loved one is in pain, you may experience powerlessness and despair, shame and guilt. But they are yours! And it’s your responsibility how to handle them - suppress, ignore or live. Having feelings is the ability to be alive. It's not the other person's fault that you feel this way. And vice versa. You cannot be responsible for other people's feelings and their lives.
Why is she silent about the diagnosis?
Does a cancer patient have the right not to tell her family about her illness? Yes. This is her personal decision at the moment. She might change her mind later, but that's the way it is now. There may be reasons for this.
Care and love. Fear of hurting. She doesn't want to hurt you, your dear ones.
Feelings of guilt and shame. Often, cancer patients feel guilty for getting sick, for the fact that everyone is worried, and who knows what else!.. And they also feel a huge sense of shame: she turned out to be “not what she should be, not like other healthy people.” , and she needs time to process these very difficult feelings.
Fear that they will not hear and will insist on their own. Of course, one could say honestly: “I’m sick, I’m very worried and I want to be alone now, but I appreciate and love you.” But this sincerity is more difficult for many than silence, because there is often a negative experience.
Photo: i2.wp.com Why is she refusing treatment?
Death is a great savior when we do not accept our life as it is. This fear of life can be conscious or unconscious. And perhaps this is one of the reasons why women refuse treatment when the chances of remission are high.
One woman I know had stage 1 breast cancer - and she refused treatment. Death was preferable to her than surgery, scars, chemotherapy and hair loss. This was the only way to resolve difficult relationships with parents and with a loved one.
Sometimes they refuse treatment because they are afraid of difficulties and pain - they begin to believe sorcerers and charlatans who promise a guaranteed and easier way to achieve remission.
I understand how unbearably difficult it is for loved ones in this case, but all we can do is express our disagreement, talk about how sad and painful we are. But at the same time remember: the life of another does not belong to us.
Why does fear not go away when remission occurs?
Fear is a natural feeling. And it is not humanly possible to get rid of it completely, especially if it concerns the fear of death. The fear of death also gives birth to the fear of relapse, when everything seems to be in order - the person is in remission.
But taking death into account, you begin to live in accordance with your desires. Finding your own dose of happiness - I think this is one of the ways to treat oncology - to help official medicine. It is quite possible that we are afraid of death in vain, because it enriches our lives with something truly worthwhile - authentic life. After all, life is what is happening right now, in the present. In the past there are memories, in the future there are dreams.
Understanding our own finitude, we make a choice in favor of our life, where we call a spade a spade, do not try to change what is impossible to change, and do not put anything off for later. Don't be afraid that your life will end, be afraid that it will never begin.
Doctors of almost any specialty, in their medical practice, are faced with the problem of oncological pathology. Defeating a tumor is never easy. Fighting cancer requires significant effort on the part of medical professionals and is impossible without the active participation of the patient in the treatment process. Therefore, the question of the advisability of informing a patient about the presence of a malignant neoplasm is extremely important and requires an unambiguous decision.
Unfortunately, at a time when “all progressive humanity” has long and unequivocally decided on the tactics of a doctor’s behavior towards a patient when cancer is detected, and is concerned with finding effective ways to cure the disease, in the vastness of the former USSR, the most important principle of medical practice is still Ethics in oncology consider the ability to hide the truth from the patient.To paraphrase Shakespeare:
“To know or not to know?” = “Fight or die passively?”
The luminaries of Russian deontology (deontology in oncology ) is considered to be academicians N.N. Blokhina (pictured) and N.N. Petrov, who in their works (second half of the twentieth century) substantiated the need to hide the diagnosis of cancer from the patient. It was believed that the mental trauma that a patient receives at the “moment of truth” is so strong that it can push a person to commit suicide or develop a doom complex in him, poisoning his life.
In the USSR, there was a certain industry of skillfully concealing the true diagnosis from the patient. For example, on sick leave they wrote “Disease” instead of “Cancer”, during medical rounds they used the Latin “Cancer”, the patient was not informed of the results of X-ray examinations and biopsies (or they lied), and they were not shown medical documents about his state of health.
During my internship, I had the opportunity to take part in a “psychological” surgical intervention on a patient with stage 4. colon cancer. To hide the truth, surgeons, under general anesthesia, made a laparotomy incision in the skin of the anterior abdominal wall, without opening the abdominal cavity, simulating a successful operation.
It was customary to report the diagnosis (of course, without the patient’s consent) to his relatives, to whom responsibility for further developments of events was shifted. Since it was assumed that the patient would die in any case, ignorance was “more humane.” Mikhail Bulgakov, a doctor by training, in his novel “The Master and Margarita” perfectly described the possible development of events when the bartender from the theater was informed that he would die in 6 months from liver cancer.
Patients were informed about cancer only if they categorically refused treatment. Thus, in the USSR, cancer patients, as a rule, died without knowing their diagnosis (“happy”), without having time to put their affairs in order, without saying goodbye to their relatives, without using all their chances in the fight for life.
In the 80-90s, doctors, at their own peril and risk, began to more often inform patients about the real diagnosis, since new treatment methods in oncology (organ and tissue transplants, chemotherapy, radiation therapy, etc.) disavowed deception. There were attempts to justify a differentiated approach depending on a person’s psychotype (sanguine people can know, but phlegmatic people cannot) and other arguments that made it possible to bypass the generally accepted doctrine.
Finally, in 1991 the Law was adopted. Article 31 of the “Fundamentals of the legislation of the Russian Federation on the protection of the health of citizens” (in force since 1993) enshrines the patient’s right to become acquainted with absolutely all medical information relating to his health. It enshrines two basic guarantees of patient rights:
- Know the real state of your health.
- It is guaranteed to be sure that the doctor will not disclose information about his health status to third parties without the patient’s consent.
Great Law! The norms adopted there work well in Western Europe and the USA. We see on TV and read on the Internet how Hollywood stars, successful businessmen and politicians, fight cancer, becoming almost national heroes. Each patient there is told the truth about the state of his health, and the patient himself decides his future fate, choosing the most optimal, from his point of view, clinic, doctors and even method of treatment, or refuses to fight, completing his earthly journey. In other words, there is a unified approach to all patients with rare exceptions (mental illnesses, etc.), which eliminates the possibility of any abuse.
What about us? Not only are our patients, but most of our doctors in the outback have not even heard of this Law. Many Internet resources continue to preach concealing the diagnosis from patients, providing patients with outdated information. There is an opinion among oncologists that the Law, in fact, does not oblige, but allows them to tell patients the truth. And if the patient hasn’t asked, you can remain silent altogether.
In the textbook for medical universities Sh.Kh. Gantsev 2006 edition we read: « The use in practice of rigid positions “to report - not to report” without taking into account the wishes of the patient and the specific situation is unacceptable, and is only a way of protecting the doctor in a “delicate”, psychologically difficult situation caused by difficult questions from the patient and his own incompetence, rather than helping in solving the patient’s problems»?!
In other words, instead of strictly implementing the letter of the Law, we, as always, introduce the human factor and create the ground for abuse, and most importantly, we deprive patients of the right to fight for their lives in all possible ways. If the Law essentially placed responsibility for decision-making on the patient, then such judgments remove responsibility from everyone. The doctor considered it inappropriate to inform, but the patient did not know, but at the same time had the opportunity to undergo an organ transplant, for example, in Germany or the USA. And it’s no one’s fault that he died...
By the way, in Ukraine (I don’t know about Russia) there has been some progress in patient awareness. Doctors are required to inform patients, against signature, of the examination results, diagnosis and treatment plan. It doesn’t work everywhere and doesn’t always work yet, but common sense must prevail!
A terribly sad post, at the beginning of which I asked the question: “Should I or should I not tell a patient about a life-threatening diagnosis, for example, that he has stage 4 cancer?”
“Recently, people are increasingly turning to me with requests for help with just such a disease. When my mother had cancer, I never mustered up the courage to tell her the truth, but my compassionate and helpful behavior betrayed me. My mother cried quietly, hugged me with younger brother and always lamented: “To whom will I leave you, my dear ones?!” One hot July day, she passed away, and it seemed that the world had collapsed to move on. But, to my surprise, life continued: everyday life gave way to holidays, births were born. children and grandchildren, and the house was filled not only with worries, but also with joy...” Bayalinova shared her memories.
For an answer to the question of whether it is necessary to tell patients in the last stages of the disease that their disease is incurable, the editors website addressed the staff of the multidisciplinary team of the palliative care project. Opinions were divided.
No need to report diagnosis
Most of the team opposed giving the diagnosis to terminally ill patients.
Oncologist Saltanat Mambetova:
Let me tell you a story related to this issue. I worked in the palliative care department of the National Oncology Center. And in our department there was one respectable lady of respectable years with stage 4 cervical cancer. She came to me every day: “Doctor, tell me my diagnosis in full, from beginning to end, what stage.”
But I didn’t meet her relatives, because my sons came after work, and by that time I had already left. I thought: “She seems to be a calm woman, a respectable lady, very educated, I can probably tell her.” I didn’t say the word “cancer,” I said, “You have cancer,” I didn’t even say the stage, and that’s it.
From that moment on, complaints started coming at me that I was inhumane, inhumane. Like, how dare I say that to her face. She's an elderly woman, and what if she had a heart attack?
And from that moment on, I began to be afraid to voice diagnoses. I only speak when relatives ask.
For example, the daughter of an elderly man, our patient, contacted me and asked me to tell him the diagnosis, because the doctors did not want to do this. I went to his house and talked to him first. Having made sure that this was a person who was resistant to life’s difficulties, I told him that he had cancer, which, unfortunately, for his age could not be treated, and none of the surgeons would undertake the operation. And he took it calmly, and then even said “thank you.” Then I realized that I needed to convey the information in doses, without shocking the patient, and then say it so carefully that he would remain grateful for it.
There was also a case when I came to a patient: I was asked to consult her. She was a woman about 45 years old, unmarried, and she had cancer and her legs were swollen. She categorically denied that the disease was no longer curable. At the end, the woman asked me: “Please tell me, will the swelling go away?” And I already saw that the prognosis was extremely unfavorable. She probably had a month or a month and a half left to live. And I answered her: “Maybe it will pass, or maybe not, I don’t know yet, let’s watch.” And she exploded: “How can you tell me this, do you want to say that I will die?” She accepted my words as if I had announced a verdict to her.
Once upon a time I had a conversation with the daughter of one of the patients, who had already died. And I asked: “Why didn’t you want to tell your father the diagnosis?” She replied that if I had told him that he had cancer, he would have become depressed and died within one year. And so he lived for 7 years.
It depends on the psychology of the person, and on the conditions in which he lived, what his family circumstances are, and so on.
Psychologist Marina Litvinova:
Hope dies last. Most people would be against having their hope taken away from them. I have worked with many patients who categorically denied that they had terminal cancer. Everyone clings to life. There is a very small percentage of those who adequately perceive the diagnosis and understand that they need to do something in time, that they do not have much time left.
And many, upon hearing the diagnosis, actually fall into depression. They die, as a rule, faster, because they refuse both treatment and food, they wave their hand at it and do nothing, they say: “I would like to leave quickly.”
People in this state can take drugs when no one is there and do something to themselves. There are also cases of suicide, we just don’t voice it so often.
MDC nurse Kharnisa Tairova:
When I came to palliative care, I just had my first patient: a very beautiful woman, she led an active lifestyle, was in public, and took care of herself. And when she was told that she had cancer, she gave up literally everything: she stopped drinking and eating. Over the course of a week, she naturally lost weight, and metastases began to spread faster. It even happened that I came, she said: “I will pay you, but do something for me so that I die.” It just burned out quickly.
The diagnosis must be reported
Head of the palliative care project Lola Asanalieva:
Let me tell you another point of view. Okay, we have little experience. Not long ago there was a seminar with palliative care specialists from Scotland. One of them, Stephen Hutchison, said that in 25 years of work in palliative care there was not a single case of suicide among patients.
Going into depression means that the psychologist's work was not enough to prepare the patient. He is stuck in the denial stage, which is very bad. Therefore, the patient must be led to accept the diagnosis.
I believe that the diagnosis should be communicated in the early stages, when the patient is in the second or third stage of the disease. And doing this is certainly not the way some Kyrgyz doctors do.
We have had several cases where patients were immediately told: “Oh, your tests, so you have cancer. That’s it, go, goodbye.” It was as if they said: “Go and die.” It's horrible.
It’s another matter when the doctor sees such tests, says: “Come into the office, sit down,” and begins to ask what the patient knows about his diagnosis. If the patient closes down, there is some kind of aggression or he does not want to know his diagnosis, the doctor ends this meeting and offers to meet after some time. And it may even take a month or two until the doctor understands that the patient is ready to hear his diagnosis.
We have just started working, and we have such a mentality that we are supposedly “good” for the patient, that we don’t tell him, we follow his lead, because there will be suicides and depression. And those who have been working in this direction for a long time say that they do not see this, these are only isolated cases. Perhaps the patient had depression before, not even related to oncology, or maybe he had a mental illness in general, and it worsened at that moment.
But most healthy, adequate people, on the contrary, cooperate with doctors, knowing their diagnosis. And if we say that the patient has gastritis instead of stomach cancer, which can no longer be treated, aggression spills out on the doctors. The patient feels that he is getting worse and worse, says: “Why are you coming to me? It’s not better for me, and in general let’s get out of here” - and begins to call us names and kick out our doctors.
Illustrative photo.