This interview was taken during the international conference «Practice of Palliative Care in Eurasia Region» in Ivano-Frankivsk on 17-19th October, 2017. Original text is published at LB.ua.
This interview was taken during the international conference «Practice of Palliative Care in Eurasia Region» in Ivano-Frankivsk on 17-19th October, 2017. Original text is published at LB.ua.
Oncology Psychologist Eva Asribabayan: “Cancer makes you put up with the fact that we are all mortal”
In Ukraine, cancer accounts for 15% of death cases, with only cardiovascular disorders being ahead of it. According to the national cancer register, five of ten citizens suffering from cancer are bound to die. Every third one will die within a year after the cancer diagnosis. Despite the fact that almost every family in Ukraine is confronted with cancer in some way, doctors still lack the ability to tell the sad truth to their patients, and family members tend to hide the diagnosis from their ill relatives. Indifference, tense silence and fear – this is what people suffering from cancer have to deal with. Even if relatives seem to be around, every individual is bound to come through this on her/his own.
In Europe, patients are treated by specially trained oncology psychologists. Oncopsychology is considered as the narrowest medical specialization, though it is mainly exercised by people without medical background. These are psychologists who support the patient and his/her family all along and help the medical personnel choose the correct words. Occasionally, oncopsychology is presented as a method to integrate cancer into psychology, but there is no direct correlation between “brain clean-up” and recovery from cancer. Talking to patients is the job combining medical, psychological and social skills; it is a lifering for those who have lost themselves in their disease.
In 2016, the Armenian Oncopsychology Association was opened in Erevan on the basis of the local state university. Its director is Eva Asribabayan. Also, Eva now works at the psychology and social service at the chemotherapy clinics of the Muratsan Hospital of Erevan Medical University. She participated in the development of the academic course in palliative psychology and is going to develop a master program in palliative assistance next year. LB.ua discussed with Eva why the word “cancer” is still scaring, how we should talk about this disease properly and how we can learn to live afterwards.
The first thing cancer patients seem to be confronted with on the day they know their diagnosis is fear. Can we say that one must win against her/his fear to win against cancer?
When I first attended an international conference, I realized that 70% of oncopsychologists pursue an existentialist approach, since it is impossible to work in this field without asking oneself about life, death and sense. Fear itself very much depends on our stereotypes. For many, the cancer diagnosis sounds like a verdict. It is not that important to explain the diagnosis to a patient, but to tell that it can be treated successfully. Sometimes, it can’t, of course, but one can always make a try. Cancer is so scaring, because it always comes along with uncertainty. I rather don’t like the wording “victory against cancer”. It makes an impression that someone was a good fighter and returned as a winner and another one did not fight well enough and lost. That would be not fair.
The diagnosis makes you understand the fact that we are all mortal. I am not sure that one can overcome fear of death and feel ok about it, but one can establish some kind of relationship with this fact.
If it is not about victory, what should we talk about then?
About recovery. About living with cancer. Victory against fear means for me that we kind of accept the situation as it is, but with cancer your life just takes a different way. Cancer becomes a part of your life.
Is it like telling oneself “yes, I have cancer, and I will live with it”?
Yes, it is.But it is clear that you can’t tell it yourself and carry on living as usual. Being ill, being afraid of death, losing your hair, parts of your body and remaining jovial at the same time – it is wrong. One needs time to accept it. One must try to tell oneself: “yes, that’s the way it is, but I am still here, and it’s me with all my specific features”. Patients often get aggressive, and this is, perhaps, one of the most repelling emotions. On the other hand, many people are motivated by aggression instead of acceptance. Acceptance stands for both a process and a system involving not only the relatives, but the medical personnel as well. To accept the new reality and to put up with it is something which scares many people. Acceptance does not stand for resignation or for the end of it all. It means accepting that the individual is now here, on my side.
Sometimes, doctors consider a bad diagnosis as their personal fault, since it’s not easy to acknowledge the fact that there is nothing you can do. What else is scaring for doctors?
They work in the field where the risks are very high from the very beginning, but it’s very hard to accept it anyway. And many of them tell open about that. There is always some turning point for a doctor when he/she has to realize that his/her function is somewhat different now. The borderline in medicine between being able to help and sometimes being unable to do anything is very thin.
Why are people so afraid of the word “cancer”?
This is surprising. I studied associations which different groups of people have in their mind hearing the word “cancer”. For ordinary people, it is equal to death. This will be the mindset of an individual with the cancer diagnosis, when he/she comes to the hospital for the first time. It can happen, though, that people recover without knowing about their cancer diagnosis. At the same time, the cancer diagnosis is always disclosed, if it caused the death of a patient. That is why it is so important to make people aware of recovery chances as well. People must know that they can recover from cancer.
It also often happens that relatives, and doctors as well, do not talk to patients about their disease or even conceal the diagnosis. Can you describe the way an individual feels from who his/her cancer diagnosis is hidden?
Probably, it is very individual, but I can observe that patients are just horrified. They are often over-emotional, sometimes they fall into depression. Reactions are very different, but one thing I can tell for sure – the awareness that it happens to you does not come at once. Nowadays, doctors do tell the diagnosis, but they do not make a clear forecast. According to my research, the word “cancer” does frighten people, but, on the other hand, its impact is due to the meaning we give to it. The common experience for all patients is that they are left alone. It is scaring to die, and a patient is left alone, there is nobody he/she can talk to about this: the family keeps smiling, and the doctors are not allowed to give any forecasts.
When you say that “doctors are not allowed to tell”, do you mean a concrete verbal veto from anyone or is it rather a self-restriction?
Normally, it works like this: the family asks not to tell the diagnosis to the ill relative, since nobody knows what to do, and the doctor decides to keep silent, even if he/she can do this and feels like telling this to the patient. In general, doctors say it is always easier to treat patients who know what their diagnosis is: there is no need to swindle, and it is easier to cooperate. As far as children are concerned, it happens that the father knows the diagnosis but does not tell it to his child and to the mother.
Does one have to tell the diagnosis to a child?
From patients you can often hear their own clear diagnosis which I myself can’t spell. Children have, at least, access to the Internet. Sometimes, the parents think that their child won’t understand anything, but the child does see and feel that his/her life is different now, that something is wrong with the parents. If people around keep silent, a child starts looking for information on his/her own, which is not always good. Children normally demonstrate that it is important for them to know what’s going on. A child must understand what is going to him/her to the extent in which he/she is ready to absorb it. A patient has the right to know, but he/she also has the right to remain ignorant. It is not very kind to make an individual absorb more than he/she is actually ready to in the given moment. But all patients irrespective of their age must be aware that there is a possibility to discuss the things, that there are people around you can talk to.
We watched the play “Oscar and a lady in pink” together in the theater in Ivano-Frankovsk (charity play based on the roman by Erich Schmitt about a little boy with an incurable disease, starring Irma Vitovskaya in the leading role). In one of episodes, Oscar is angry at his parents, because they did not tell him his diagnosis thinking he was unaware of what was going on. You told me that that scene was very close to reality, that this is the way it looks like in real life.
In the moment, when Oscar was lying with his back to the public with his mother sitting aside and his father standing at the bed, all silent, I started to cry. Because it was a scene demonstrating three absolutely lonely individuals, each one in her/his own way.
Do you talk to families in your daily work?
Yes, sure. But it’s really talking. I do not offer any therapy to them – the same psychologist can’t treat family members and their ill relative. In some cases, I can have family members sit together to talk about it on their own. It is important for the relatives as well to know that they matter, because, all of a sudden, everything starts to turn around one person in the family.
Why don’t they talk to their relative about his/her disease?
Because they are scared. They ask themselves: “how is he/she going to live with this information? Will he/she cope with it or not? And how will I live with it? And what if he/she refuses the treatment?” The most important about “Oscar” is even not the fact that the parents do not let their child go, but that they live in the future which actually does not exist; in fact, they even do not have any present. In cases like this it’s like: “I am dying, and you are not with me, you are doing I don’t know what!”
Whose job is this to tell the diagnosis to a patient?
I am sure that this is the doctor’s job.
What role does the psychologist play here?
My lecture at the international forum for palliative assistance in Ivano-Frankovsk I named “Informing bad news”, which was translated quite literally. But I do not like the word “informing”. Informing is like telling a person bluntly “you have cancer” and leaving him/her with this news. However, a message is, first of all, an act of communication. But the problem is that medics do not receive any special training in communication. When doctors tell me: “I am scared to tell the diagnosis to the patient, because he/she might commit a suicide then”, I tell then: “If you just tell your patient something like “Hello, you have cancer, good bye”, this is most probably what your patient will do”. It is important for everyone to understand that someone will make efforts for him/her. Even if the treatment itself does not deliver a positive result, the quality of life can and must be improved under any circumstances. A psychologist could discuss the diagnosis with a doctor and, if required, advise the best way to disclose the diagnosis to the patient. The perfect case is when a psychologist should be somewhere around but should not intervene in the process of telling the diagnosis. Asking a psychologist to tell the diagnosis to the patient is like asking a doctor to make psychotherapy for the patient
How can you understand that it is important for patient to discuss their condition?
The first time I made this conclusion was after my talk to nurses, since these are the nurses who spend most time with patients. Nurses can always tell you that they are overwhelmed with questions, but they are not trained how to deal with them. Of course, establishing contacts between a psychologist and a patient is a process which takes time: the first meeting is always about getting to know each other, you are originally considered as a part of the system, then the patient learns about confidentiality and checks to what extent he/she can trust you and why he/she might need you. Moreover, it is difficult to treat a patient, if he/she has always been convinced that psychology is nuts. Sometimes, it all goes down to the request “to tell some story”.
And what do you answer in such cases?
I explain that my task is a bit different. But it does happen that a patient really needs a bit of silence. In this case, it is important to prevent a depressive condition.
How can you be sure it is not a pathology, when a patient does not talk?
It happens seldom that patients do not talk at all. More often, these are kids who do not talk, and they do it out of protest. But there are clear indicators available to measure depressive condition. In Armenia, this is diagnosed by psychiatrists, I can only guess about it. It is important to understand where the borderline is here – if I start to do someone’s job, it will affect the quality of my job.
If you assume that a patient has a psychiatric diagnosis, can you send him/her to the psychiatrist?
It is always complicated, because you still have to consider the stigma “I am not insane”. It is easier for people to deal with neurologists than with psychiatrists. The most frequent disorder among cancer patients aged 50-60 years is the permanent state of alert. But they have always thought that lack of sleep and fighting constant panic attacks is ok, it’s just some “individual feature”. They can’t even assume that it can be remedied. The disease makes these symptoms stronger, and it’s increasingly difficult to control oneself.
I let patients understand that the hospital is not the loveliest place and that is why I am here and they can always approach me. If we treat a patient as a private customer, we actually make a contract with him/her under which we work together pursuing the same goal and this cooperation with the customer is often a kind of supporting therapy. The psychologist does not harass the patient to change his/her mindset and to work with his/her childhood traumas, since the doctor deals with an individual with his/her own capacities who has somehow managed to live for, say, 50 years and somehow handled his/her problems. I like to ask my patients: “How have you handled your challenges so far? How do you do this? What helped you in your life?” These questions are very helpful, they help patients restore connection to their lost “myself”.
The diagnosis can disrupt your sense of self-identification. Apart from losing his/her main occupation, a patient loses his/her role in the human relations – instead of the beloved mother, a patient can turn into the beloved mother who needs to be taken care of and needs to be consoled all the time. Another thing is that patients literally lose a part of themselves. Sexuality is still a taboo topic in our country, especially when it comes to women who have children. Such women are told: “You have your breast cut off, it’s not a big deal. Your kids are already adult. The main thing is that you have survived.” But why does she have to put up with this “not a big deal”? It’s her breast, she’s been taken a part of her body. And she has to come through this. And also, she has to learn to live without her hair. Sometimes I tell my female patients: “let’s talk about some sense, let’s sort it out”. But in the next second I think: “my God, she’s despaired, because she does not have any hair left, what sense are you going to talk about? Her face is different now, she looks into the mirror and can’t recognize herself, and she must find the way back to herself first”.
Overcoming a loss
When an individual loses a part of his/her body, what impact does it have on his/her “myself”?
To get used to one’s new body, one needs, on the average, two years. The thing is that not all patients have time for this. People have to learn to live with their new bodies in a bit different reality. It comes to the situation when a person loses not only his/her normal condition, but also his/her functionality – he/she is not in position anymore to do simple things like, for instance, walking out on the street. And despite all this, a patient must find the answer to the question: “what is left for me, after all?”.
Is there any way to prepare a patient for the loss of an organ?
It must be discussed in advance. The question is how to do this. Announcing changes in the patient’s body does not guarantee that the patient will note it properly, but at least he/she will start finding his/her way to her/his different body. I facilitated a support group for women, and many of them confessed to me for the first time: “my husband has not seen my breast yet, I keep it closed”. At the same time, they tried to convince themselves: “it’s ok, I have already grown up a child, it’s ok”. It makes sense to ask oneself the question: “is my female nature confined to my breast only? What is another way for myself to feel myself a woman?” One should not play down the loss of an organ, but the patient needs a possibility to mourn it.
It is hard for anyone who is suffering from a disease to accept the fact that he/she must rely on other people now. What role does independence play for patients?
Very often, relatives are keen to help and take over everything just not to bother their beloved one. But a human feels a human not only, when he/she receives something, but also, when he/she gives something back. This is the reason why it is so important for children, for instance, to talk to other children, to play and to learn – these are things which give them sense in life. This is the reason why a sick mom is keen to know about the problem of her children and to be able to give them some advice. I always ask my patients what inspires them, what they love. Probably, it can’t be done at 100%, but we can find ways to do at least a part of it. If a patient suffers from a serious disease, it means that his/her life has changed. And if a patient can’t do what he/she used to do, it does not mean that he/she can’t do anything at all.
What shall we tell a patient asking how much time is left for him/her to live?
We reflect on this together with patients and try to figure out how it will be like after they depart. Cancer is unpredictable and can make you die. Cancer is a disease where those who have almost no chances somehow survive and those with high chances die. In fact, I work with uncertainty. A psychologist has no right to talk about the time remaining.
Does it happen that the presence of a psychologist makes patients aggressive, like “you have not been through this and have no idea how I feel”?
The only thing I can do in such cases is to agree, because we really do not know how the patient feels like. But it makes sense to make a patient understand that we have abilities and skills not to understand, but to help. I have never felt any aggression from my patients, which is probably due to the fact that I never say “I understand”. I can imagine, assume, but I can’t understand. A psychologist can indeed provoke aggression through his/her behavior. But aggression is sometimes the necessary element of the contact. There is a different thing which happens to our psychologists more often: due to unclear borders in oncology, they often unofficial social workers. Sometimes, patients ask them personal questions like “where else do you work?”, “are you married?”, “how are your parents?”. On the one hand, insincerity affects the contact; on the other hand, excessively personal relations can be dangerous as well.
Are there any things which you should not tell the patient?
It’s not worth telling the patient what is the best way for him/her to act. In general, there is nothing which is absolutely clear in oncology. Your appearance is also important in a way. For instance, it took me long to decide if I may color my hair.
You did not want to have too much attention?
It’s a bit different in oncology. It is important for me to at least in approximately the same situation with my patient. It is wrong to wear fancy clothes and high-heels when visiting a person who is undergoing a chemotherapy treatment. But, of course, the key thing in my job is intention. You must have a clear idea how you want to help. This mindset comes over to the patient.
Life after cancer
How is assistance organized in Armenia for those who have recovered from cancer?
We do not have this kind of assistance, unfortunately. We have small separate programs, but they are not consolidated. Last year, I visited a hospital for children at Harvard and observed that a meeting with the psychologist was attended by like five people only. It was surprising for me – such a big hospital and only few children seeing the psychologist. But the local psychologist told me: “there are just few of them, yeah, but these are the ones who really need it”. That was the first time I understood that American kids can describe their feelings the way no adult can, they are used to reflecting and studying themselves. From many of my patients attending group therapy sessions I would hear: “I was really scared, but I came here and saw that I am not alone in this situation”. This is the key word in this activity – “not alone”. In Erevan, adults often stay in their rooms not to see the children who are in the same unit. I try to make these adults go out, because the kids love life like no adult can. Kids can teach the adults a lot in this sense.
It happens that some person does not believe he/she can survive, finalizes all unfinished matters, sells the business, says good bye to his/her future and then recovers. It becomes a double blow to this person. Is it possible to learn or to teach how to live after cancer without fear?
Fear of life is the back side of the fear of death. When we are afraid of death, we are afraid of life, and vice versa. It’s not easy to return to life after cancer, because it is different. Each of us can have cancer, but we do not often think about this. A person who suffered from cancer, is afraid of a relapse. Neither myself, nor anyone else can’t give a hope to anyone. We can always give an alternative, but only in an indirect way. A patient can come to me with so many hopes that I can’t just tell this person: “you know, and what if you die anyway?” Normally, sooner or later, patients expresses different scenarios, and this is the moment when it is important to touch upon the alternative option.
Maybe, readiness to all scenarios also depends on the doctor’s ability to explain appropriately and consistently what the patient will have to come through later, how he/she can feel and what complications could come up?
This is indeed very important. Informed consent is not just a nice formulation. When buying a car, an individual asks more questions than when seeing a doctor. This is because the doctor uses medical terms and the patient feels like an idiot. Also, the emotional condition of the patient lets him/her absorb only 20 to 30% of the provided information. Patients can’t understand and memorize everything during their first visit, and doctors should not be upset about it. It is also important for adults to talk about the progress of the treatment. It is hard to say if it’s worth telling it to teenagers, because they can start to feel symptoms which were probably not present at all. But in my opinion, it has more to do with sensitivity and mindset than with the age. The borderline is very subtle here, but it is important to explain what side effects this or that treatment will have. It often happens that after the first bout of chemotherapy patients do not feel any side effects and think like “I thought it would be bad, but I feel great”, but I understand that he/she will walk out of the room and will be overwhelmed with the symptoms he/she is not prepared for. Preparation to possible developments is the part where psychologists and doctors cooperate. Confidentiality in medicine works in a different way: I inform the patient that his/her personal story will stay between us, but everything related to the treatment I will be discussing with the doctor.
Obviously, every individual needs a different period of time to overcome the loss of his/her relative, to mourn it. But are there indicators showing that the mourning has been protracted and turned into a problem?
Psychologists often say that one year after the departure is enough to realize this fact, since this is a cycle which you spend without your beloved one: his/her birthday, your own birthday, New Year, day of departure, start of the spring season. If a person starts to cry upon mentioning the departed several years afterwards, it is a reason for concern. If the things in the room of the departed remain untouched, it means that a person lives the life of the departed and not his/her own life. The common opinion is that in the first 40 days after the death of a relative almost any kind of behavior (including that which is actually considered psychotic) is ok, since this is a reaction to the suffered trauma.
Also, there are symptoms indicating protracted grief: sharp reactions, tears, insomnia, lack of functionality, inability to take care of oneself and relatives. The only thing which is worse than the grief which has not been overcome is a new grief overlapping with the previous one.
Also, we often talk about premature grief: a person is still alive, but it is treated like he/she has departed already.
What makes you feel satisfied in your work with patients?
These are moments of sincerity and openness which you almost never experience in your routine life. These are moment of being happy and close to each other. No matter what – a meeting with a psychologist is a meeting of two humans anyway. Everything which is going on in psychotherapy depends, in my opinion, to 60% on my relationship with the patients. I just like to see how beautiful a human can be. This beauty sometimes leaves me out of breath.
Can it be that your personal sphere is affected by such close relations to your patients?
No. If you mark the limits properly from the very beginning, it won’t happen. But it’s scary, you can always lose control. To prevent it, supervision is in place.
Can you confess to a patient that the borderline between you and him/her has been trespassed?
It is a matter of paradigm, and the answer depends on what school of psychology the specialist belongs to. Patients used to be placed on a couch to make them invisible. Now, the common idea in humanism, in existentialism as well as in Gestalt therapy is that the understanding that we are all humans is the most valuable which you can translate to the patient. A psychotherapist often becomes an important and close counterpart for his/her patient and confessing that he/she is not perfect either the psychotherapists indicates that he/she is a human as well. Insincerity is detected by patients immediately. Confessing the breach of the border is not a problem for me, if I understand, why it happened. This is not about “my problems we have solved, let’s talk about yours now”. The answer to the question “why am I working with this person?” is the thread which keeps the psychologist stable and does not let him/her fall into a personal relationship with the patient.
You have been working as an oncopsychologist for nine years already, what keeps you in this job?
I was confronted with cancer and death in our family – I lost my father. He prepared me for that: we had always been very sincere to each other and could talk about things directly. All that time I thought: “what if it was a different way, if he was alone? That would be so horrible!” I want people to have a chance to have someone on their side. If it’s a person’s choice to be alone, it’s ok. But everyone must have a choice.
Where is the line between assistance and affection in psychology?
This is the key question for specialists. On the one hand, you can just burn out in one to three years, if you put yourself into everyone’s shoes; on the other hand, it won’t work out, if you do not feel your patients anymore. It is important to take care of yourself first. For me, this is a kind of supervision, my personal psychotherapy. I am often asked “what should I do to feel nothing when a child is dying?”. I do not think it is possible and necessary to do anything about it. It is important to accept that it will be painful. Our job is also to legalize reaction to death. Grief, anger and aggression are not always legal, but when we demonstrate them, we allow ourselves to feel them. Also, I am sure that we always have people around who can help us, you just have to see them.
What have your patients taught you?
One of my patients died, when she was 21. You do not have deepened psychotherapy in oncology, but that was the case. Now it seems to me that 60% of all that accounted for my personal psychotherapy, based on what I received from her. She was unique, she was very well aware what was going on with her, but she had such a strong hope! It wasn’t about self-deception, it was about her belief in life. She was a phantastically luminous person and taught me to bring light even in hard situations. Also, I had a patient once who refused any contact and kept silent all the time. I would come to him just to sit around (sitting quietly close to someone who does not want to see you is quite a challenge). First, he started to smile at me, then our communication got less formal, finally we started to cooperate. My patients have taught me that the most important thing is just to be around.
This interview was taken by a journalist of LB.ua Marharyta Tulup. Original text is here.