“The most varied kinds of discomfort can be observed in relationships with incurable patients. It is obvious that an optimal state can only be achieved if a new way of communication is created around death on the levels of natural human relationships and forms of community. This should deal with the appropriate psycho-social processes, make it possible to meet the dying at a spiritual level, help in mourning, prepare people for the fact of death and confront them with its consequences, including those that are already apparent. Most probably new rites, ceremonies and schemes of behaviour will also be needed that can stimulate and regulate communication concerning death.”
(Buda, 1997. p.14)
Becoming a “travelling companion” for the terminally ill
About hospices in general
The Britannica Hungarica describes hospices in the following way:
“A hospice is a home or a hospital institution established to relieve the physical and emotional distress of the dying. The term ‘hospice’ comes from the Middle Ages and referred to night shelters run as charity where pilgrims and travellers could rest and be refreshed. These places were often run by religious orders, the best known being the Saint Bernard Hospice, which still functions for travellers across the Pennines Alps even today.
Although separate hospitals for incurable patients already existed before the Twentieth Century, the special needs of the dying were only recognised after World War II, which then led to the modern hospice movements. One of the initiators of the movement was Cicely Saunders, who established Saint Christopher’s Hospice in London (1967). Together with other health care experts she realised that many modern medical treatments are not applicable in the case of dying people. Routine methods used for aggressively lengthening life in intensive care units often contribute to the sufferings and to the isolation of fatally ill people and deprive them of the possibility of dying in peace and in dignity. The health care system was not able to offer supportive care for this group of patients, which called for the formation of the modern hospice system.
Hospices provide a sympathetic, reassuring environment with the intention of making the last days of dying people as pleasant as possible. The reduction of physical pain is the highest priority: painkillers, tranquillisers and different physiotherapeutic methods are applied to relieve physical pain. At hospices pain prevention is a major objective, besides of course relieving already established pain. It is achieved through constant monitoring of the patient and the precise division and dosage of their medication according to individual needs. At hospices patients receive moral support from both their loved ones and staff, and their emotional and spiritual wellbeing is promoted through various methods. Patients are usually taken to the hospice on the advice of their medical practitioner, when they are thought to have only some weeks or months. Care may be offered exclusively within the frameworks of the health care institution, as outpatients, or at home.
The Hungarian hospice movement started its development in 1991. Today the various organisations are co-ordinated by the Hungarian Hospice Association.”
This information about hospices is available to anyone who is interested in the phenomenon or the movement. There are however aspects of this field that have not been systematised and elaborated upon. In this study I will discuss some of these special aspects.
The role of presence, trust and listening at a patients bedside
The path to death is an intensely personal event. The dying face unanswerable questions and they seek out the secret, their innermost secret. They often feel lonely and outcast in this the most sensitive period of their lives. Those who accompany them along this difficult path can facilitate the process most effectively with their trust and presence.
During our lifetime we all wish to be listened to and paid attention to. We also know that other people long for the same attention. At a patient’s bedside, however, we loose confidence and feel embarrassment. Many people think that patients need an interlocutor, a lady companion, someone to cheer them up or console them. When we want to do something or help, we think of some activity. But the most effective thing we can do is to listen to them in a devoted and active way. Some of us know that the most important thing is to listen to others but in certain situations we forget or are unable to do it, or we think that silence, that is passive listening is enough. Being able to listen is a complex skill, which takes a long time to acquire. It depends less on intellectual capacities than on the degree of emotional and personal development. While learning to listen to someone in an active way, one may also witness an incredible development in one’s own personality.
I have been working with dying people for years as a voluntary lay member of a hospice team. My personal experiences have taught me how important understanding attention is at the bedside of a relative, friend or acquaintance. Yet, I am still learning the art of ‘listening well’. This concerns sensitive, attentive presence, about remaining silent and listening. Silence — ‘keeping quiet’ — is also a very intense form of communication. Silence can be maintained in many ways although it is difficult to master. Remaining silent alongside a dying person is an exceptional task.
The meeting point of Carl Rogers’ personality-centred approach and Mihály Csíkszentmihályi’s concept of ‘flow experience’
Besides emphasising the role of active listening, this study hopes to demonstrate that devotedly and unreservedly offering attention, listening and being whole-heartedly present may appear to represent a sacrifice, yet brings great rewards. We are not donors for we receive priceless gifts, but only if we invest sufficiently. The transporting experience of a moment, the experience of belonging together, a spiritual experience and the potential for personal development reside in genuine encounters.
Carl Rogers’ patient-centred theory deeply affected me with its empathetic mode of behaviour, which incorporates stepping into another person’s conceptual world with such force that it were as if one were living that life, “moving in it without making judgements”, feeling what they feel and not feeling that they do not dare to feel. We can achieve this by putting aside our self for a period and creating room for the other. In rare moments, when I actually manage to create such an emotional state with a patient, I discover that the atmosphere around us unexpectedly changes, a change that is almost precisely measurable. It develops into a relaxed and trusting state, which, if I manage to maintain concentrated attention, will condense into a heated flow-experience. The two approaches meet here. In his book “Flow“, Professor Mihály Csíkszentmihályi (head of the Faculty of Psychology at the University of Chicago) introduced the concept of flow, as a sensation that concerns the experience of joy apparent in any area of life. It concerns the experience of being caught up in a current that appears during creative human activity, let it be work, gardening, mountain climbing, play or anything else. It might seem daring or even tactless to associate this feeling of joy with dying people, particularly for those who avoid the opportunity for more intimate time or a deeper spiritual encounter with the terminally ill. However, people who work in the field recount moments of uplifting beauty and elevation.
The three outstanding figures associated with assisting the dying are Elisabeth Kübler-Ross, Cicely Saunders and Mother Teresa of Calcutta. The initiator of the Hungarian hospice movement was Alaine Polcz. They first spoke up for humane death and, rising above sadness, their books and speeches attempt to reveal to us the elevating and enriching strength and beauty of this task that is so terribly difficult for many of us.
Nonetheless, this power and beauty can only be found after acquiring empathic attention. Rogers sees this as the complete surrender of the self in the interests of the patient. Csíkszentmihályi describes it as the precondition for flow-experience. Flow can be more precisely described as the state of perfect experience. It happens that all of a sudden one experiences joy for no particular reason, for example when one hears a tune or comes across a beautiful landscape. However, a perfect experience occurs most often whilst performing some purposeful activity, when investing, when bestowing extra energy on something that has a fair chance of a successful outcome. It is then that we carry out the task without any effort or frustration and focus our attention fully on the joyful purpose itself and our preoccupation with existence ceases. Paradoxically, after a flow experience the sense of self returns more intensely, anxiety disappears, we feel strong, infinite and confident, confusion and entropy clears from our heads and we are not constrained to make order in the flow of our thoughts, there is no state of crisis, we do not feel that we ought to defend ourselves. This state is the flow experience; interviewees most often described the feeling in this way, “as if I had been floating” or “as if some current had grabbed me”.
“Flow experience helps the Self in the process of integration because in this state of intense concentration consciousness becomes unusually clear. Thoughts, intents, feelings and all the senses focus on the same purpose. The experience is harmonious and when the flow episode is over, there is a sense of being more ‘together’ than before, not only inside, but with other people and with the world in general.” (Csíkszentmihályi, 1998, p73.)
My own experiences, Rogers’ concept of empathy, Csíkszentmihályi’s flow and Eric Berne’s teachings about spontaneity and vivacity, as well as the teachings of Eastern philosophies on the importance of present existence led me to the hypothesis that the greater our experience of the moment and our empathy towards another person, the more reciprocal the assisting relationship will become. Flow experience offers the greatest rewards to those who give the most. It is a fact that we are able to control a part of our consciousness. Consequently, through remaining silent and listening we can develop the ability to attain a higher degree of intimacy and togetherness, to become participants in a common flow experience even in the painfully difficult context of communicative behaviour with a dying person. My case studies offer an analysis of the effects of both active listening and the lack of active listening on communication and, through that, its effect on togetherness. The investigation also shows that flow experience that can be experienced in the deep togetherness that is attainable through active listening.
The mother who died alone surrounded by her loving family
My mother died nine years ago. During her long illness, I visited her every day and we talked. I was almost the only person in the family with whom she could engage in open and honest communication. Everybody else was evasive, euphemistic or openly dishonest with her. I came under attack because I held the opinion that if the diagnosis is not made known to a dying patient the wall of lies will make them lonely and isolated. The family did not understand this and referred to me as heartless and, even after I had told my mother the sad news, were still unable to accept openness.
My mother rarely managed to open up to me as much as I had wished and after a while our conversations became staccato. We often fell silent, which was embarrassing and it saddened us both that we were unable to talk. I longed for my mother to open up more but I did not know how to help and at times I even felt she was annoyed with me. Those were difficult days for me indeed. Our enterprise took all my energy and I was forced to tear myself away from my endless tasks for visiting times. I felt guilty about my teenage children for whom I did not have enough time, either. As a result, while we were sitting about silently, my thoughts often wandered to my unfinished duties. I wanted to move us out of this situation so, following a psychologist friend’s advice, I dug out old photos and asked my mother about the past, unfortunately without result. Despite all this every day she awaited me with intense impatience but I still do not know what these meetings really meant to her. I can recall only one thing that perhaps created a more intimate moment: she sometimes complained to me about her ambivalent, sometimes hateful feelings toward my father, which I listened to with honest understanding.
My mother had the privilege of dying at home, surrounded by a loving family. Still, I feel no sense of calm when I think of those hours. Seeing that my mother was in the terminal phase my father called the family together. My brother and his wife, my father, one of my mother’s elder sisters and I squeezed in around the bed in the small room. My mother was no longer lucid as the painkillers had moved her out of the real world and she was lying with her eyes closed and sometimes mumbled something as if talking in her sleep. First her sister and later I held her hand, but then we just sat in silence or talked quietly during the long wait.
I find it impossible to understand why I was not with her completely, devoting myself to her departure. Her disturbed consciousness distanced me from her, somehow the lack of any feedback discouraged me so I lost confidence and sat puzzled in an armchair and waited. No matter how awful it sounds I was, in fact, waiting for her to die to be able to go home. It was late at night, I was tired and longing for my home and my bed. My father fell asleep exhausted. My mother’s sister suddenly said, “it’s over, she’s dead”. There was a frightened atmosphere, we woke my father who asked despairingly why we had not woken him up earlier, and people around me started to cry.
Although my mother died surrounded by her loved ones, I feel she was hardly less alone than in a hospital ward, lonely and abandoned.
I only cried about six months before her death, when I learned that she could not be saved. On that day a very deep sadness boiled up in me, then I burst out sobbing. I never cried after her death.
The father at whose bedside attentive listening was learned
My father died two years ago. His story is very interesting and I would like to tell a lot of people about it because it might help. I had always had a closer relationship with my mother who was almost a friend and with whom I could share everything. In contrast to this, I often argued with my father about silly little things. After my mother’s death my father remained alone, sorely tried by her loss, so I made a conscious effort to visit him. Initially, we had a lot of arguments as we had always done. Then, as the years passed, we adapted to each other. I became more accommodating and tolerant and he also tried to avoid arguments. In the meantime he fell ill and often had to stay in hospital because of his breathlessness. He would spend weeks at the sanatorium regaining his strength before he could return home to begin the cycle again. During my visits to the sanatorium we would often sit out on a bench in the park, at times among the fresh scents of spring, at others in the warmth of summer or in the faint sunshine of autumn.
At the beginning, I was always in a hurry as I was very busy — just as I had been during my mother’s illness. My family had grown with two more children alongside my teenage offspring. One day, when we were sitting on a bench, I began to feel my customary restlessness and that I should leave. I realised what I was doing and pulled myself together, asking myself where I was running and if there were anything more important than staying with my father for a long time. I thought that I didn’t have to go to the nursery school to collect the children yet, that my other chores could wait. From that day on, I carefully arranged my life in order to have enough time for the visits and, while I was there, I consciously cleared every disturbing thought from my mind and tried to get in tune with my father. I listened to him, I asked him about his thoughts, his feelings and his longings. I became interested in the past and I realised that if he left my questions would never be answered. Earlier, I had been bored by his stories, but at that time I asked him again about his childhood, about his apprenticeship, his wartime hardships, about his relationship with his parents and with my mother. He was happy to talk and I was happy to listen. Little by little we became closer. He slowly opened up and more confidential matters emerged. Sometimes the time I spent with him seemed to fly by.
His lungs deteriorated and his admissions into hospital became more frequent. On one occasion his extreme breathlessness precipitated an embolism but he recovered enough to return home. On the last occasion he was taken to hospital by ambulance as an emergency admission and almost asphyxiated on route. He fell into an alarming state in the hospital. I rushed in to see him and could see that his chances of survival were slim, which the doctor later confirmed. He was quiet, lying still with his eyes closed. We talked a little and then I just sat silently beside his bed.
The following day I arranged things so that I could stay with him to the end. My brother and his wife also arrived. They were soon preparing to leave but my brother, seeing my resolution to stay near my father, for days if need be, returned shortly afterward although he had clearly been fleeing that situation. My father still lay quietly, half dozing. It was difficult for him to talk but he managed to express his needs. Every now and then he would ask for water, at other times he needed to urinate. When some members of the family arrived he looked up and said, “Well, are so many of you here?” And later on, “I am going away. I am leaving you.” At which everyone began to protest, “Oh, no! How can you say that?” I leaned over to him so that he could understand me, I took his hand and I asked, “Do you think so, Dad?” To which he quietly answered “Yes, I do”.
I later told him that he had had another embolism and that had caused the extreme pain. He kept his eyes closed, nodded almost imperceptibly. By then only the three of us remained behind, my brother, his wife and I stayed with him all the way through. The day and the night passed quietly. In response to my questions father told me that he had no pain, but in general he did not feel well. When he had to urinate, he called me. I asked if he wanted me to call the nurse but he protested and with great effort sat up. My brother and I helped him to use the bottle. My father wanted me to help, surprised and moved I struggled to find his tiny shrunken penis.
The following day my brother dashed into his workplace and my sister-in-law and I remained to observe my father’s breathing. I kept in contact with my husband by telephone and he advised me to tell my father something nice as a good-bye. I liked the idea so I leaned close to my father’s face and I asked if he could understand me. He nodded but kept his eyes closed. “I’ll tell you something Dad, did you know that your marriage to my mother has always been an example to me and has given me strength all my life? It showed me that one could live in a nice way, that good marriages exist and for this and other reasons I had a very beautiful childhood. You know Dad, perhaps I found my partner because I believed that it was possible, because I had seen you two do it before.” He smiled weakly, lifted his hand and stroked my face. He had not done anything like that since I was a little girl. Then we just sat in silence, I held his hand and watched his breathing. I was very much with him. He was not given any painkillers and there was no need for any other medication. He left us lucidly conscious, with less and less frequent breaths and with a final sigh. I was glad to be beside him, I felt he had a pleasant death. My brother was very happy that he had stayed beside my father after all and he was horrified by the thought that my father had not even had the strength to call the nurse.
During the following weeks I often cried but these outflows of tears brought me relief and purification. Instead of pain they gave me a pleasant feeling of sadness. I missed my father but I was full of inexplicable good feelings, too. I recalled his death and I could see some beauty, some kind of joy shining through the painful fact. An example of this is that I washed and preserved as a memory his sweaty cotton pyjama top that had been drenched with his sweat on that last day. For the two years that have passed since his death, I have been wondering how it is possible that my poor mother, who had had such a close relationship with me all my life, was more distant from me at her death than my father with whom my relationship only improved in the last phase of his life. Neither of them is near me any more but somehow my father lives on inside me, I can feel his presence in a heart-warming way.
Kati, who was seemingly listened to
I came to know Kati in hospital. Dr. M. ushered me into her room and introduced me to her with a few kind words. Kati wasn’t the least interested in who I was and why I was there and immediately started to tell me the story of her illness. Without any questions she kept up the story for almost three hours. Although I tried hard to listen carefully, distracting thoughts about her were continuously running through my mind: “How is it possible that this nice young creature will soon die and that she is talking about how much she likes going to the discotheque, dancing and making love? She says that she would like to find a real partner and to have another child with, her son is eleven years old and she is very worried about him. She is proud of being young and feminine and yet what a big son she has, and that the benign tumour she has is diminishing with the radiotherapy and how lucky it is that she came in time and not two years later…”
It was a mystery to me as to how this simple, but far from stupid woman could be so blind to the nature of her illness. During the hours I spent with her, I was eagerly waiting for her to turn her attention to me so that I would be able to tell her this and that about myself. I thought that for this fresh relationship confidence would be indispensable and I could gain it only if I had the chance to open up so that she could get to know and love me. I sought the opportunity to join in the one-sided monologue. Unfortunately, despite all my efforts, I left the room without having said anything. I was disappointed and tired, I felt that no real relationship had been established between us in spite of the long and exhausting meeting.
Róza, who could re-evaluate a period of her life with the help of an attentive listener
During my visit, Róza’s son, Gáspár, was in a garrulous mood and talked about bygone days and their family life. I was suddenly aware that we were having a nice chat over the patient’s head, as though she were not even there, so I anxiously asked Róza whether she enjoyed listening to these old stories or whether we were perhaps disturbing her. I also privately wondered if Róza might actually enjoy these recollections and if she might even grow closer to her son by listening to him telling me, a stranger, about his happy childhood rather than his mother. Róza reassured me that it was interesting for her as well and that we should go on talking. From the long conversation I learnt about what a traditional, close-nit family they had been. Every Sunday the children and grandchildren set out from various locations for a common purpose — to visit the grandparents who lived in a large villa set in a two-acre garden in Budakalász. Róza’s parents-in-law always received their children, their daughter and son-in-laws and their grand children with open arms. The women cooked lunch on a huge stove in the kitchen while the men chatted and the children were at their happiest visiting the numerous animals in the outbuildings: the horses, the pigs, the poultry, and the rabbits. Every child had a “twin” of a similar age amongst their cousins with whom they had a closer friendship, so they had a great time together on these Sundays in the huge garden in the fresh air. The image Gáspár described of his childhood was so attractive, so idyllic, so beautiful and dreamlike, that I began to feel sorry for my own children who only met their cousins on special occasions. I even decided to change this and to gather the family together occasionally.
During my next visit I sensed that no more than my stroking could reach Róza’s soul as something warm and that we would never be able to communicate with each other again. She was sleeping, beyond reach and totally indifferent to the outside world and I entertained no hope that she would escape this state of introspection. So it came as some surprise when, after a few minutes, Róza summoned up all her strength, struggled into an alert state and even managed to initiate a conversation. She whispered how dependent she felt and what patience she must require, adding how nice it was for her when the nurse came and washed her, that it brought sunshine into her day. “Certainly, there are patients that require a lot of patience”, I said, “my poor mother was one but you are not like that at all Róza”. Hearing this clearly felt good to her and she did not argue, but merely said that she was trying her best. By then she had grown tired and she fell silent, I took her hand and we held the silence together. I decided to offer her a gift and tell her about the precious thing my family had gained from her and her family. I told her how much I liked the way they had lived with their regular family meetings and that I now intended to change our family customs — their beautiful example had ignited something in me. Róza began to recall those good old days, they had indeed been good, they had been beautiful and they had loved those Sundays a lot. She pondered awhile about it and she might even have smiled had she been able to. Her son came in and joined the stroll up memory lane, talking unselfconsciously for a long time, a child once more searching out the secrets of the outbuildings on the family homestead in Budakalász with his cousins. It was pleasant for all of us, including Róza who seemed to enjoy the journey into the past. I also enjoyed hearing about an idyllic family that in this day and age seems so incredible. Then Gáspár offered some fruit yoghurt to his mum and we saw with astonishment that instead of the usual one or two spoonfuls she ate a quarter of a cupful.
Teréz, who managed to reveal something beyond suffering
At lunch it turned out that one of the old women could not feed herself. I went back to her carefully sat her up and we started the slow Sisyphean toil. Teréz was hard of hearing and in any case, too weak to speak. She was visibly struggling to catch her breath and the oxygen tank beside her bed also made it clear that this was a problem of hers. It took her minutes to collect herself between each spoonful of soup. Beside breathlessness she was tortured by nausea as well, which the brimming spittoon on her bedside table bore witness to. In spite of all this she had asked for the soup but the eating of it was too burdensome for her and she was bent over double on the bed. There was no need to have a talent for empathy to understand that she must have felt terrible. The contents of the soup dish slowly diminished with each spoonful she took and I had to wait for a long time before I could offer her the next. I felt very sorry for her. It was the first time that the thought occurred to me that I, too, would become this old, with thousands of wrinkles, with a face distorted by tufts of hair. Yet behind the appearance I would remain, my older daughter who knows me as pretty and youthful, would come to see me and feed my withered and helpless self.
A drop of the tomato soup fell on my skirt and the nasty stain made me tense and while I waited for the old woman to calm down I wondered if the stain would come out. I then realised that I was not together with her enough, my thoughts were wandering even though I had learned that I should not let them because there is nothing more important than the patient. However, it is not easy to control ones thoughts and I was trying to get in tune with the old woman. As I watched her painful breathing, I unconsciously began to breathe with her, I had somehow come across the notion that if I was practically breathing with her, if I was taking air together with her, in, out, in, out, my easy and healthy breathtaking would help hers. Obviously, I did not really believe it, but I would not have been surprised had it really happened. I would not presume to suggest that my actions made it easier for the woman but I could identify with her situation, her suffering, her loneliness and her helplessness so strongly that later I felt I was able to relate to her with an altered state of mind. I somehow understood the weight of her existence from the inside, the value of each and every spoonful of soup. When she began to retch I stroked her thick, dry, grey hair and then supported her back, embracing her until she calmed down.
Rubin tea with Éva
Éva was a single middle-aged woman, more or less capable of attending to her own needs, optimistic and pleasant. During one of my visits she mentioned that she liked drinking fine tea from an elegant cup. Of course she did not possess one and less attractive ones would suffice but still, she could imagine the feeling of sipping delicious, fragrant tea from a beautiful cup and of it bestowing the joy that the conversation and the encounter deserved. On the next occasion that I visited I took along with me two china cups and some special tea that I had bought especially for the two of us, enjoying the preparation for the meeting.
It was a pleasant event, in spite of the negative effects of the dismal weather and my consequently gloomy mood. We made some tea and lay the small round coffee table. Éva procured some biscuits to go along with the tea and our conversation ranged across several topics. Although I had learned not to talk about myself, inwardly I still betrayed Éva because I kept drifting off into my own world. Quite abruptly something happened and I suddenly became very interested in the way Éva talked about herself. I began to listen attentively. I asked some questions to make sense of various concatenations. Her confidence grew and she talked increasingly honestly about herself. I wanted to go even deeper, so I continued to listen and pose questions. As she was talking about her life and about her approaching death answers came to her, too. As fresh questions arose new answers were conceived, rather like the way one peels an onion we peeled away many layers of Éva’s soul, together. She spoke for hours and I contributed only questions as in the meantime we drank the fine, fragrant tea from the beautiful cups. Incredible as it might sound, it suddenly felt as if we were intoxicated from that drink. Reality ceased to matter: the stuffy room with the lingering heavy smell of incontinence pads and urine-stained clothing, the untidy poverty of the basement flat, and my own duties all became distant. There was just the steaming tea and the two of us, as if only we two existed, not just in that room but in the whole universe.
In the park with Éva, a flow experience
It was a pleasant spring when I began to visit Éva. By taking my arm she could walk relatively easily, so we always went to a nearby park where she could watch at length the children playing joyfully. She was interested in every small event or in the ‘eventlessness’ of the place: the smell and the colours of spring, the birdsong, and the clouds in the sky or the pebble by her shoes. At these times I also sank into silent contemplation and along with my mobile phone I switched off my distant thoughts so that I was able to attend to Éva. I had changed a lot by the time she became my patient. I was capable of humbleness, of staying in the background, of giving active and interested attention. Éva also made my job easy because she was just as happy with contemplative, silent meetings as she was with conversations. Thus I was also allowed to enjoy a carefree spring. These were the hours of rest and relaxation without which I would have been unable to take time out for a walk, for sitting in the park with nothing to do, for an hour with my phone turned off. It was my conscientious presence, my being with her that facilitated my own peace as well. I seemingly sacrificed my spare time and freedom but in fact it was no sacrifice: I felt real joy in what I received in return. I got on the same wavelength as Éva, together we turned our faces to the sun, looked at the pebbles by our feet and watched the exciting shapes of the clouds. Her pleasure and my pleasure became one.
Éva, who made a gift of her death
Éva surprised me with her death. On the Thursday we had enjoyed the busy sights of the playground and on Monday I was told at the hospital that Éva had been taken away by ambulance and that she was dying. On Friday she had suddenly become unwell and had been practically unconscious for three days.
I went to see her but the sight saddened me. She lay alone in a depressing, barren room, and the sight of her was depressing and barren, too. She was stiff and her mouth was half open, only her loud breathing reminded me that she was a living person. I sat down, took her hand and quietly told her that I was there and I was going to stay there as long as I could. She did not react. She seemed not to perceive anything from the outside world. The thought that she had to die such a lonely death in that barren room saddened me. She had no close relatives, and although hospice workers had often stayed with her in the preceding days who could tell if there would be someone there in her final hour. I had three hours before I had to collect my children and I could not think of a way to be able to stay with her. Neither did I know how long it would take, days perhaps. I was trying to figure all this out as I sat silently beside her bed and I did not release her hand for even a moment. From time to time I even talked to her in the hope that our meeting would offer her some strength. I felt an indescribable peace; this perfect experience of intimacy and harmony made an indelible imprint on my memory.
I may have spent two hours with her like this when she started to breathe more slowly, with longer and longer intervals before she took the next breath. I suspected that the end was nigh. I held her hand tighter so that she would feel my encouragement. I tried with all my heart and soul to be with her. She sighed deeply one last time and I was sitting beside my lost loved one and instead of sadness I experienced joy: I felt that Éva had made a gift to me of her death.
“People should understand that every time they threaten or humiliate another person, cause unnecessary pain, order them about or reject them, they become a power that causes pathological psychological phenomena, no matter to how small a degree. People should recognise that everyone who is nice, helpful, polite, psychologically democratic, open and warm-hearted represents an actual psychotherapeutic power, now matter to how small a degree.” (A. Maslow)
Modes of active and passive listening
The common feature of the cases I have presented is that listening played a principal role in them. However, the quality of listening varied considerably, ranging from what, in the communication theory, is termed ‘passive listening’, to attentive or ‘active listening’.
When the helper visits Kati in hospital we see an example of passive listening. The young woman was bursting with the desire to communicate, so much so that she did not allow the unknown visitor speak. But the helper was not the ideal audience either, at the beginning she did turn toward her with interest but soon after her attention level dropped. Her thoughts showed scattered attention. She became stuck in what she had heard and went into analyses. Busy with her own inner monologue, she reflected immediately on what was said even though the story continued. At the same time she also contributed; she was preparing for a ‘self-introduction’ and was constantly alert to the moment when she could launch in without being impolite. This divided attention does not allow someone to get emotionally in tune with someone else, to generate understanding with empathy. In this situation it is not only the speaker who loses, the listener loses as well: her fatigue and disappointment is a direct result of her lack of commitment. She only superficially undertook the role of the listener and her listening remained devoid of the emotion and warmth characteristic of passive listening. The investment in the encounter was missing. Real presence is more than physical proximity; it is a whole-hearted presence, a complete devotion of the self and devout attention and identification with the patient and their story.
In the first case the woman’s visits to her mother are similarly sad, for although she was motivated by a sincere desire she was unable to develop a more intimate contact with the parent. This case involves another type of listening. Here the mother is silent, as is her daughter. They fail to create an inner silence and cannot get onto each other’s wavelength. The cacophony of the world outside the patient’s room filters into the patient through the daughter and the conversations remain superficial, unable to deepen. The lack of content in their communication refers to the lack of personal presence. This silence is disturbing and they both feel uneasy. Commitment to the relationship is also missing here. The girl’s thoughts centre on her unaccomplished tasks as she tries to meet the requirements of her job, her children’s needs, her husband and her sick mother. This transitional, neither-here-nor there state makes genuine communication impossible, and although she is honestly longing to share a deep and meaningful time with her mother in the last months, her lack of commitment prevents her from creating the prerequisite ambience. During this period of her life she had no time for herself, though ensuring an inner peace is a precondition for forming an undisturbed, harmonious relationship with an incurable patient.
“Attendance, careful listening, absorbency in another person to a meaningful degree is only possible if one is able to immerse in yourself as well and if one can at times even talk about oneself and in a different manner from what the reality of the moment would dictate or what would be intellectually encompassible.” (Vannesse, 1993, p.28)
However, her life, burdened as it is with chores may not be the only reason for those sadly empty encounters that are practically devoid of content. What could be the explanation for such a hiatus in sensitivity and understanding? And why are they missing in the helper’s case where a hectic lifestyle was not an issue? Aronson and Rogers define fear as a common factor in the lack of sensitivity and understanding. Effective communication requires us to overcome our fear of others and to recognise our weak points. But this is not simply a question of decision, as we often do not even arrive at the question about what it is we are hesitant about or afraid of. The emphasis is on sensitivity, or rather on whether we are capable of learning how to pay attention to our own feelings, of whether we can develop sensitivity for others in ourselves. The girl in the first case study does not reach the point of realising her own fears. Her careful, reserved behaviour is evidently a strategy resulting from fear. She is unable to recognise or to formulate her feelings, and consequently to turn to her mother with sufficient sensitivity.
The requirements of Rogers’ non-directive technique
In Rogers’ approach, in a supporting relationship the atmosphere promoting development rests upon three conditions: acceptance, empathic understanding and congruence (Rogers, 1983, p10). The first element, the attitude of acceptance can be clearly observed in the behaviour of the girl (who had first failed with her mother) with her father. She relates to her father with complete devotion and a positive attitude. Although she recalled that earlier they had had a lot of arguments, at the time of the illness she had been able to accept her father’s feelings, temper, fears, oppositions, even his standpoints that countered hers. She did not feel it is necessary to prove her point by any means, to criticise her father’s behaviour constantly, nor to indulge in the protocol of entertaining, diverting or consoling him. Acceptance, as a mode of relating to another person, is rather difficult to acquire. We would all like our family, friends and acquaintances to see things in a similar way to ourselves. Consequently, it is intensely difficult to allow ourselves the tolerance in which others are free to be themselves. Over the years, the girl reached the point with her father where she could accept and respect his whole personality. Her acceptance makes it possible for him to become a ‘person’, and thus to change, develop and flourish until the last moments of his life. She had been unable to offer the same kind of acceptance to her mother, although she had basically loved her mother more. Fear is the only explanation for this, fear erected a wall between them, a wall of silence and unuttered words.
The second condition, understanding, only operated on the level of the mother and daughter relationship. The girl mentions as an aside how she listened to her mother’s complaints about her father. Yet the significance of this is not to be overlooked. The mother had accumulated a lot of pain and anger towards him as a husband because of the many affronts of their last years of marriage, as well as his role as her caretaker; the ambivalent emotions of the patient are apparent, a difficult to express mixture of gratitude and recognition. Consequently, the daughter becomes a suitable vent for the woman’s frustration about the husband, for the letting of accumulated grievance. The girl does not set herself against her mother and assert her father’s role as a devoted nurse to the mother, instead she listens to her mother with sympathy and understanding.
When we listen to another person, we are inclined to immediately evaluate and qualify what they say. We do not usually even attempt to understand, we immediately follow our accustomed patterns and constructions because understanding is risky: if we allow ourselves to understand others, this understanding may change us. So once again fear prevents us from placing ourselves in another person’s thought world deeply and with empathy. In this case the woman is able to do it and their relationship breaks out of grey superficiality. Her entire relationship with her father can be characterised by this one area of her relationship with her mother. The second case is a rare example of sensitive understanding, of a complete identification with the other person’s soul and thought world, which allows them an easy, safe atmosphere of confidence.
Cicely Saunders, the great pioneer of the British hospice movement, also emphasises the importance of understanding in connection with incurable patients
“Once I asked a man who knew he was dying, what he expected most of those who were taking care of him,” she said, “that they should seem to be trying to understand me.” (Szögjál, 1995, p.47)
Rogers idea is that if a person is understood, then that person belongs somewhere and who needs the feeling of belonging somewhere more than a dying person who is preparing to lose their partner, children, friends, work, wealth, joys, sadness, in one word: everything. Such understanding is only possible if we try to relate to the patient with empathy and moreover with empathy such as that, which Carl Rogers expressively described. Of course we cannot hope to avoid every discomfort and conflict through sensitive attention. The patient is a human being in their illness as well, with human emotions and expressions. They can show aggressive, hostile behaviour to visitors, turn their backs impolitely, feel bored, indifferent, restless, irritated, desperate, reserved, or apathetic. The list of the possible emotional states is endless. They are often driven to, for them, alien behaviour precisely by facing up to their illness, and because they are ill, they are much more at the mercy of their emotions.
The observations Elisabeth Kübler-Ross made of the emotional stages of incurable patients are today widely known all over the world. Confrontation with the fact of illness is followed initially by denial and isolation, which turns to anger. The third stage is dispute, after which comes depression, before resignation is finally reached. Naturally, emotional processes do not always follow each other exactly in this sequence, but as lay people it is useful to acknowledge their existence so that, with appropriate empathy, we can identify them if we meet them. This identification has the effect of releasing tension, which in turn helps with acceptance and understanding.
In the second case study the father becomes important for the woman, the focus of her attention. As a person she is less prominent, so the characteristic elements of everyday social communication fall away from her: insincerity, the wish to be good enough, the desire to gain the upper hand or to prove oneself, the multitude of conscious or unconscious masks. This brings us directly to the third factor of Rogers’ conditions: congruence. Sincerely reflecting the feelings she experienced in their relationship re-affects her father and thus creates the potential for further unconditional confidence.
Openness and active listening
Openness and the creation of a safe environment is closely connected with understanding, where one makes it possible for another person to open up and reveal. The girl does not achieve this openness with her mother despite all her efforts. She encourages her mother toward more honest and freer expressions, for example while they are looking at photo albums, but without result. Her behaviour is presumably not in harmony with her verbal expression. The lack of congruence is revealing since, as is widely recognised, people can excellently decode the language of body, gestures, mimicry and other non-verbal means of communication, which reflect our inside world much more clearly than our verbal utterances.
In her relationship with her father, the girl is perfectly open, as a result the father, too, becomes more and more open, and he speaks more and more courageously about himself and about his profound inner processes. The girl is sincerely interested in her father’s past and present, she expects answers to her inquiries and she attends to them closely. This mode of listening is termed ‘active listening’ and is the most efficient way of maintaining communication. The listener turns to the partner with empathetic understanding, acceptance and respect. This atmosphere dissolves tensions and creates confidence. But silence here does not mean muteness and attention is often not enough for the speaker to open up. What is required is what communication theory dubs ‘door-opening questions’, which help speakers to open up and encourage them to go on with communication. Beside questions active listeners give continuous feedback, they sometimes repeat a word or a sentence or ask about a detail. All this empowers the speaker and they go on talking with confidence because they can see interested attention. The summary or paraphrasing of certain parts offers a reassuring picture that what was said was also understood. In the case of active listening emotions are also worth reflection: ‘It seems that this thought is frightening for you’ or ‘you seem to be embarrassed by this question’.
The father is the main beneficiary of this active listening. The girl learns how to make the most of the relationship, the situation and the moment. She learns active attention. She excludes the outside world and she leaves every other aspect of life behind. She undertakes to abandon her individuality, to suppress her own demanding, greedy self, to wholeheartedly focus on her father and beam her interest onto him. In response the father opens up and flourishes in the warmth of attention and a relationship full of emotions and intimacy is formed.
Pay attention and listen to me
If I ask you to listen to me and
You give me advice,
you do not grant my wish.
If I ask you to listen my feelings
And you explain why it is wrong that I feel that way,
You tread on me.
If I ask you to listen to me
And you feel you have to do something
To solve my problem
Excuse me, but I feel
You are deaf.
I asked you nothing more than to attend to me,
And to listen to me.
I did not ask you to advise, nor to do,
I asked but to be listened to.
I am not helpless,
Just weak and downcast.
When you do something instead of me
That I ought to do,
You only reinforce my fear and weakness.
But if you accept that I feel as I feel,
Even if this feeling is incomprehensible to you,
You make it possible for me to examine
And to make sense of the incomprehensible.
If this happens, the answer becomes clear
And there is no need for advice.
Perhaps praying is useful for many people
Because God does not offer advice or solution:
He attends and listens and entrusts the rest to us.
So, you, too, please attend and listen to me!
If you want to speak, wait awhile.
And then I will also be able to attend to you
Agnes Beguin (1997.5)
The external and internal features of listening
The visible part of ‘good listening’ is active attention, the signs of which are eye contact, nodding, turning to the person and relaxed posture. Looking is one of the most important feedback functions, a speaker may realise the presence, or lack of interest through eye contact. If one nods, one can react to a speaker without disturbing or interrupting them. We express our understanding and at the same time encourage them to go on. Posture tells a lot about the degree of interest. By standing, we motivate the speaker to curtail their talk, but when we make ourselves comfortable and lean forward a bit, we communicate a positive and attentive attitude. Volumes have been published about body language, but we do not have to be experts to discover dissonance, if there is a contrast between uttered words and thoughts.
These are the external manifestations of listening and attention, but they are only the tip of the iceberg, the real event takes place inside. Listening is not purely an intellectual perception of the information conveyed, listening involves joining someone: tuning in, a feeling for and a sharing of what the speaker feels. One becomes absolutely dissolved in the present, brushes off images unconnected to the situation, and gives oneself to the moment. The listener tunes in with the speaker and enters their story. The emotions present in the narrator are sensed through empathetic attention. Nothing is important beyond the other person. This absolute self-abandonment (i.e. Rogers’ triad: acceptance, understanding, and congruence) creates a qualitative change, virtually palpable in the atmosphere around the two people. “Rubin tea with Éva” is not only a core example of this, but the moment of shift is discernible: how the interest of the helper is suddenly awoken, how she sheds her gloom, how she begins to pay attention to the patient with complete abandonment and, finally, how she is captured by the elevating flow-experience of the encounter.
Spiritual accompaniment into death
The principles of efficient communication are valid for all social interactions. But there are extraordinary situations where a more intense sensitivity is needed; such is communicative behaviour with incurable patients. When we encounter an incurable illness, we experience the feeling of powerlessness. We long to help, and come to the bitter realisation that we cannot do anything. The most we can do is to offer our presence and attention. How we achieve this small thing is far from a matter of indifference. Presence can manifest in different ways, as we have demonstrated. It ranges from an apparent, physical presence (as we saw with the woman and her mother and also with Kati the helper in the hospital), to sensitive listening, devoted, intensive participation, to availability. The range is broad.
The sensitivity of people on their way to death is intensified, but their attention is focused in on themselves, they slowly turn inward. They discover dimensions that have been hidden so far, they dig deeper and deeper, and they try to find their innermost truth. If we attempt to help them in this process, the best thing we can do is to respect this intention and with our loving presence create a safe, supportive atmosphere for their inner work. A bridge to a patient can only be built from empathetic attention, so that they would not enclose themselves in the prison of their loneliness, and so that they can maintain their bonds with people, the outside world and themselves. Even in the last days of her life Aunt Róza was able to accept and be happy over the light, humorous, relaxed shared moments that from time to time occur in human relationships. Dying is the occasion of final reckoning when the question of whether one did this or that well is posed. The answer can be a tormentingly painful — not always. With the help of her son, and the helper’s sincere interest and ability to listen, Róza was able to re-experience the positive events from her life over and over again and can catch a glimpse of the legacy she was leaving behind her when she was gone. In this case, Róza received help in evaluating her life.
The woman in the first case study sought something similar: she wanted to preserve or even strengthen the bond. She tried to save her mother from the pain of separation, which is why she told her mother the unfortunate prognosis of her illness, but in the absence of sensitive attention she misjudges the timing, the method and the strength of the discussion. In the shadow of death people are sometimes possessed by philosophical thinking, mysticism, or spirituality, which is difficult to express. Our support in this uncertainty may mean that we help to bring to the surface what the dying person only suspects. In that situation people do not long for ready answers but for human closeness, a loving, supportive atmosphere that helps them in getting closer to their innermost essence. A friend, the family, a care provider can offer the most if they get in tune with this inner process, sensitively attending, but most of all intuitively sensing psychological processes that are active in the patient, joining them on their road as a partner.
In the case that presents the mother and daughter relationship, the woman realises the shortcomings in her communication with her mother but is insensitive to the messages beyond words, to the fine resonance that her mother conveys to her. Marie de Hennezel, the French psychologist who dealt with the dying for almost a decade at the so-called “Palliative Care Department” used an expression “spiritual accompaniment to death”. By this she meant when those who stay with a dying person turn to them with respect, when they see something other than merely bodily suffering, when they catch a glimpse of the invisible part of their personality as well — their intimacy, the secret of their personality — when they trust the inner power working in them despite all appearances. This basically represents a trust in their future, in their ability to change and to develop even in the midst of agony.
“In this sense, a spiritual accompanying to death is nothing but simply being present beside the other, listening to them and with trust receiving all that bursts out from them. …spirituality is presence, listening, trust.” (de Hennezel—Leloup, 1999, p.24)
The second case study offers a neat example of presence, when the woman turns to her father with pure simplicity, she wants nothing more than to wholeheartedly be with her father. This wholehearted presence naturally brings about good answers, good listening, sensitive attention and humane acts that contribute to the inner peace of the dying person, to their great and secret inner journey. Relatives usually cannot or do not dare to make this step, or else they are unable to get in tune with the inner events of the dying because of a misinterpreted humanitarianism. Their presence is filled with anxiety and confusion and is consequently of no help to a human being who is departing.
We do not help dying people by opposing them, by wanting to maintain appearances at all costs even when they know for certain that they will die, by holding them back and forcibly clinging to them. In our case, the definite statement expressed to the visitors “I am leaving” could have been a farewell but the reflex protestations made that impossible. The patient was neither in the mood nor did he have the strength to resist or to prove his point, yet the lack of understanding caused him pain. The woman, however, simply accepted her father’s feelings when she said, “Do you think so, Dad?” The father nodded and simultaneously an atmosphere of intimate confidence and understanding between them was formed. From then on the father knows that it is her who will ‘understand him’, he put himself in her hands, and entrusted her even with the act of urination, which was fraught with embarrassment.
When the mother was dying, the same girl and the family members did not communicate their sympathy and support through their behaviour. Their attention was not focused on the patient as was revealed through several examples of meta-communication. Mimics and gestures can be telltale signs, but their presumption is that the patient cannot perceive these in her unconscious state. It is an accepted fact that an unconscious patient perceives much more of their environment than has been commonly supposed. Touching, stroking, holding her hands a bit more firmly, the words addressed to her, though they seemingly fall into unreciprocating silence, they should not lose their strength or be ended. Should we think that the time for silence has arrived and that words are unnecessary, then the same internal attention should be given to the departing person.
It is desirable to be present, that is to be there physically, spiritually and emotionally, again in other words, to be in the present, i.e. in the moment through thick and thin. Only in this way, can accompanying someone to death become a common experience and not the solitary sadness of people sharing the same space. The extent to which it is accurate to refer to the departure of a beloved person as an ‘experience’ is demonstrated by the second case study, the woman’s account of her father’s death.
Togetherness and flow experience
When we manage to get in tune with a patient — overcoming our own fears, without discomfort or strenuous effort in a natural and relaxed state; when we are able to concentrate our attention — as if “taking in” the other person’s feelings and thoughts, then we may experience a certain kind of joy and flow. This can be the case even when we witness pain and suffering. We are afraid to see such feelings, we resist and erect walls of fear, yet paradoxically this defence does not protect us from the emotions we are trying to avoid but rather constitutes an obstacle to any intimacy and joy in being together. The above cases demonstrate, that if a relative or a helper is able to hand themselves over with trust to being present, to being there in time and space, they become open to this releasing or giving up of the self, then they will be a recipient of an unexpected gift. In the examples when the daughter is unable to ensure this real togetherness and presence for her mother and when the helper does not give the sick young woman Kati understanding attention, we can see that all participants are frustrated and disappointed. There has been an apparent investment, time has been devoted and the listening factor was realised, both examples show endeavours at good will. Just the same, no genuine and deep encounter came about nor was there a joyful experience. The other stories show just the opposite.
The real break-through in the relationship between the woman and her father took place on the bench of the sanatorium when she realises that she has nothing more important to do than be with her father in a completely devoted way.
“The most important moment of your life is
The present moment,
The most important person is
The one you have to sit down and talk with right now.
Its most important action is love.”
(Master Eckhart, Fourteenth Century)
This had been a gesture intended for her father but in the process she rid herself of her own shackles and was able to experience the flow of togetherness at a higher level. They both profit from the product of the investment: harmony.
In Róza’s story, empathy helps the visitor to achieve a state of perfect intimacy. The voluntary helper recognised that the son’s story-telling mood could serve as a basis for an opportunity for joyful remembering and common nostalgia with the mother, even though she was too weak to talk. The son helped the mother by becoming her ‘mouth-piece’ in a summarisation and examination of her life. The helper was not blocked by her own complexes, by facing death, the reality and closeness of suffering, pain and death. She remained her natural self beside the bed of the dying, attended with sensitivity, identified with the emotions of the patient and also enjoyed family memories along with her. Her devoted presence and curious attention builds a bridge between the dying mother and her son, as well as becoming an active recipient of the intimacy between them. The time spent together enriched all three people.
Suffering and pain – but still flow
The voluntary helper feeding Teréz overcame a much more hopeless situation and came to experience flow despite all the difficulties. The helper, recognising her empathy-free behaviour, tried to focus on the patient in some way. It is difficult to concentrate the flood of thoughts and create sympathy and love in ourselves if they are not there, so she applied a technique that came to her spontaneously and which is simply an easy to perform exercise, not really expecting the result she actually got. No matter how simple the exercise may be, it requires both attention to be focussed and a complete devotion to the patient, consequently emotions will generally deepen and the other elements of getting in tune will also occur. Sympathy and the wish to help cannot remain at the superficial level that the helper tried to shift from. A stronger sense of belonging together and of union or we could say a sense of love appears. Erich Fromm writes about this identification or diving down to the essence:
“In fraternal love the experience of connection with every person, human solidarity and human unification comes about. Fraternal love is based on the experience that we are all one. The differences in talent, intelligence, and knowledge are negligible in comparison to the unanimity of the common human essence alike for all human beings. In order to experience this feeling we have to get from the surface to the essence. If I perceive the other person superficially, I perceive mainly the differences that separate us from each other. If I get to the essence I realise our unanimous character, the fact that we are siblings. This is a ‘central relatedness’ not between surface and surface but between centre and centre.” (Fromm, 1993, p.65)
Indeed, through superficial and scattered perception—hairy birthmarks and a wretched old body—the helper arrived at the essence where she caught a glimpse of their unanimous nature, her innermost essence met the innermost essence of her fellow-human. This was a meeting between “centre and centre”. There was no verbal communication between the helper and the patient. The event itself, feeding, is a simple, everyday event, still, a movingly beautiful change occurred beneath the surface. The helper, having overcome her own limitations, could offer an extension of what she could do without this concentrated attention. But the experience is not only that of giving, rather the suffering experienced together condenses into a “flow experience” from which the person awakes purified and empowered. She is not the same person that she had been and is able to glimpse life with a wider perspective for a moment despite all its sufferings, a rare gift in everyday life.
It is an unusual contradiction that we simultaneously experience our own identity and identification with another person. Csíkszentmihályi describes this intense feeling as follows:
“After a flow experience the structure of the Self becomes more complex than before. The Self develops in accordance with the growth of complexity. The evolving of the personality into a more complex whole involves two significant psychological processes: the result of differentiation and integration. Differentiation results in becoming unique, i.e. different from others, while integration means just the opposite: unification with ideals, people and things outside the self. The complex Self succeeds in connecting these contradictory tendencies.” (Csíkszentmihályi, 1998, p.72)
The helper consciously changed her attitude from partial presence but she unconsciously applied the Tonglen method (meaning: giving and receiving), which is based on ancient Eastern traditions. This breathing exercise opens the potential for us to concentrate and to be together with another person. According to the Eastern ritual breathing out releases our tensions and fears, while breathing in floods us with the sufferings of another person, however, instead of retaining it the next exhalation releases it. We emanate the light, the power and the peace of the next inhalation towards the patient. We give the patient a ‘delight-transfusion’ that does not emanate from us but only passes rapidly through us; we are channels open to spiritual helpers.
- Y. Leolup (orthodox priest and theologist, professor of psychology and philosophy) described this phenomenon beautifully during his conversation with Marie de Hennezel as mentioned earlier.
“What actually happens on these occasions is that the great images or great archetypes filling the spiritual subconscious of the patient become mobilised…
Our help reaches from breath to breath, from heart to heart, from unconscious to unconscious.” (de Hennezel—Leolup, 1999, p.106)
Awareness, vivacity, intimacy
A comparison between silent togetherness with incurable patients, active listening and flow seems perhaps the least daring in the description of the experience with Éva in the park. The helper’s life is typically hectic, full of ringing phones, family and work duties, and one might think that she has simply added to her problems with her undertaking but from her narrative it is obvious that she experiences the present moment there and then at its fullest. She was only able to do that by excluding everything from her mind that did not belong to the given moment, by putting aside every problem, every unaccomplished task, and by willingly to devoting herself to peaceful togetherness and the pleasures of the present. She looked at the world around them with new eyes, with the curiosity of a child as her receptors took in impulses permeated with the pleasures of existence.
The helper surrendered herself, put her own life aside and made herself a part of the patient’s life. It is a self-sacrificial gesture: most people, and she herself on many occasions, feel compelled to bring their problems with them, to talk about them, to share them with the other person and to thus ease their soul. Nonetheless, our helper did nothing of the sort. She ‘sacrificed’ herself briefly for an incurable patient, which is when change occurs: the sacrifice ceases to be a sacrifice, life reveals beauty to her that had gone unnoticed. Her rushing between past and future stopped in the present, the exhausting activities of the soul were calmed, she inhabited the present moment and perceived what surrounded her: birds, the sky, the pebbles, spring. This is the state we term ‘awareness’.
“Awareness is an ability to perceive the coffee-pot and the bird songs in my own way and not as I was taught. Awareness requires living here and now and not somewhere else in the past or in the future.” (Berne, 1984, p.235)
Chance events in life do not offer us the most intimate moments. Neither do extraordinary events hold the greatest pleasures in store for us. Life offers us every moment as a gift but we do not leave the space for it. We do not allow ourselves to see it because our attention is scanning in a thousand directions incessantly, because of our superficiality; neither do we allow ourselves to hear it due to the continuous inner stream of thoughts.
The most varied philosophies warn us from Antiquity today. Osho, a currently fashionable esoteric master writes,
“Can you hear the song of the ladybird in the distance? Can you hear the twittering of the birds? This is susceptibility. Susceptibility is perfect silence in the living present: you are motionless, without stirring, yet you are not asleep, you are alert, completely conscious. Where silence and awareness meet, emerge and unite, there is susceptibility.” (Osho, 1998, p.19)
Berne and Osho both compare this state to the liberated state of a child.
“Be a child. Set out from the state of ‘I do not know’ and silence, awareness appear by themselves. Then life is a blessing.” (Osho, 1998, p.19)
And from here there is only one step to
“intimacy, which is the spontaneous and matchless openness of the conscious person, it is the absolute liberation of the eidetically sensitive, unspoilt child living here and now, in complete naivety. ” (Berne, 1984, p.238)
The sick Éva and the helper conjured up intimacy and became the beneficiaries of their work themselves. Their shared time is absolutely harmonious. According to Berne people are “alive” in these cases because they know how they feel and where they are and when things happen.
“They know that the trees will stay there after their death, but they will not be there any more to watch them, so they want to see them now, as intensely as possible.” (Berne, 1984, p.238)
As intensely as the poet lives his life:
Like a mad lover loves…
with wet hair under a fallen sky
tread on the dry leaves of an autumn alley of trees:
so did I love walking on this earth.
Or like a traveller in foreign cities
who on the first night goes and walks,
runs to look here and there, never satiated,
pouring with sweat in a joyous trance
arrived at last to the city of his dreams
where all is new, a city of shop windows
the colour of the drinks in cafés,
where passers-by throng in festival mood,
the wild thyme’s scent of freedom
so now he longs to stay forever,
as he is, so was I with this world.
I knew: here all is fresh and ephemeral,
matchless, rare, a fleeting phenomenon.
When a butterfly passed I said, “Take a good look,
you see this for the first and last time.”
When I drank wine with a good friend I took him
with an open heart and words, as if by morning
I would have to die—and all this
because I feared the dawn when
there would be no friend, no wine nor waking.
Others feel this too, but tuck it in their brains.
But I carried it in my forehead.
My conscience from its prompt box constantly
threatening, “It all will end.”
And this spark here between the manacles of non-existence,
the miracle of existence that I am,
on the beast’s toothless gums of destruction
a firefly still twinkling
the eternal and harrowing lore of
passing: these gave my life
a flavour, delight, magic and glory,
these made me a fool, enraptured me
and enchanted the whirling wonder
palace out of sheer existence for me.
Intoxicated from the earth’s one-time wine,
entwining I embraced
every concept, object and person,
like drunkards cling to lamp posts.
Thus my world became beautiful. The starred-sky,
a museum wallpapered with needlepoint;
the three dimensions of space, around,
a storehouse filled with baled experience, where
my clock-face, a table laid
for twelve, my seconds,
heavy droplets of honey-dripping.
Thus I became the lover of the earth,
the great fan, the Romeo of clouds,
the troubadour beneath lost cities,
the carver of gothic embroidery in rhymes,
and the naked priest of the pagan festival’s
night bath, until my time was ended
and I vanished, the fleeting phenomenon
on the eternal sea of phenomena.
The art of togetherness
The internal attitude with which we are present at the bedside of a patient determines the atmosphere. ‘Being present’, the most complete acceptance of the moment creates the confidential atmosphere in which the patient dares to let go, does not feel a burden to the other, nor feels hurried and can sink into a tension-free and easy state. This of course then affects the helper in return and a degree of intimacy may develop in which they can both exist in a relaxed way. They may become parts of the flow experience and, in accordance to the give and take of the situation, they are both enriched through this togetherness. An important characteristic of the perfect experience is that it does not happen to us just like that, but we create it ourselves. Our everyday life hides numerous opportunities to give new colours and flavours to our routine activities, to get into the current, the flow experience. The most beautiful moments of our lives are usually not connected to passive relaxation and passive reception but they are the result of some effort, of a physical or mental investment on our parts. We can learn how to control our inner experiences and thus to change the quality of our life. If we live through every single detail of our lives with completeness, good or bad, then we come closest to our living, vivacious selves.
We can invest a lot of work into a quality relationship with a patient. The values we can offer, and which can bring about flow experience are: concentrated attention; quieting our self; making space in our minds for the other person’s thoughts; undertaking to dare to enter the forest of fear, anxieties, and pains of the departing person; the courage to take risks; and the struggle to understanding. But if we do not emerge in things, if we always carefully tiptoe across the surface, we will never discover the subtle resonance that is only revealed to those who are willing to look at everything that surrounds them with a curious eye, and with brave and living wonder. Artists look at the world in this way, but in reverse: there should be a creation. On every occasion we need to turn togetherness and sensitive attention for the other at these encounters into a work of art, or even an art form that is unique and unrepeatable. Listening is in itself a creation; it is an intellectual activity that also gives pleasure during the process of its creation. A work of art is always unique.
Often no work of art is created, because real art requires the metamorphosis of the artist, and every work has a price. If I am unable to devote myself, if I am only half present or if in my mind I am trying to solve questions from my own life I will get no further on either side. I will not be present and there will be no break-through; my body, my eyes, my gestures will communicate my absence to my partner, and being together will not bring peace or relief to them either. At the same time, neither shall I be able to proceed with tidying up the chaos in my own mind. This in-between state brings no positive experience or flow; there is no investment and consequently no profit either. I would be able to return home tired having completed one of my chores, having done, so to speak, what I had to. On the other hand, real togetherness, a flow experience energises, refreshes and results in the empowerment of the self.
The autothelic personality
With the decision to switch off the mobile phone and suppress inner dialogue and the continuous hubbub of her own life a self-induction process started for the helper. She starts to notice her surroundings, come alive and be conscious. This brings about the liberation, to use Berne’s word “spontaneity” that we can experience when we are not constrained to feel only what we have been taught.
“Autonomy is realised if the following three abilities are activated or start functioning again: awareness, spontaneity and intimacy. ” (Berne, E. 1984. p.235)
While Berne talks about the autonomous personality, Csíkszentmihályi mentions the autothelic personality in a similar context. An autothelic act is one that we do exclusively for its own sake, the aim is to experience the activity itself. If we study because we find joy in it the experience is autothelic. However, if we want to be top of the class or to enter a reputable institution, then we will be directed by the hope of a future reward. If someone does things in general because they enjoy it and not for an external purpose their personality can be described as autothelic. An autothelic personality does not require recognition, reward or renown the reward comes from their activities.
This study does not intend solely to demonstrate that if every now and then we are able to get in tune with a fellow sufferer, to give up the disposition that requires constant and active participation, and to turn to a patient with total empathy, then joy and a positive experience will be ours as our giving transforms into receiving. This work also posits that on those occasions we will have the good fortune to experience incidental phenomena. This intensive presence can be acquired and consciously applied! Initially we warn ourselves, constrain our wandering self, discipline our inner world and create order. Once we have experienced the inevitable flow experience a few times, it will become both more frequent and easier to tune into the familiar and desired state. An autothelic personality can also be acquired, as well as be innate. When we sit down with a patient to listen with complete devotion because we long to do it and we would like to be a part of this intimate relationship, then it will happen easily, in self abandonment and for the sake of the deed itself. If it does, then the patient’s vulnerability will also cease, because as long as the patient is in a situation where they are requesting and accepting they will feel their vulnerability. But as soon as they can catch a glimpse of, or a sense of an established communicative situation, of the other being present of their own free will, for the sake of being together and as an act of joy, completely and wholeheartedly, then the patient will be liberated of any thought of being burdensome.
Manifestations of joy near death
“What can we give a dying person in the last half an hour of his life?
The belief that they are not alone.” (Mother Teresa of Calcutta)
The last moments of life are very valuable, and those who can witness and experience these moments, are recipients of an unbelievable privilege. Yet we avoid it because we have not yet experienced it, how much richer and more humane it can make us to be present at a last goodbye. Anybody who has spent time with the dying can tell stories similar to that of Éva’s. In numerous cases the unconscious dying person may wait for days for a beloved person to show up, a grandchild, a partner, a prodigal child, a relative coming from far away. They let life go only when the awaited person arrives, without regaining consciousness even for a moment. There is another much more refined form of perception than seeing, hearing, and touching.
Consequently, it is not only a privilege, but also a great responsibility to stay with a dying person in their last moments. There is a real need for an ability to listen well! It is not enough to be present physically; one has to apply all one’s creativity to control one’s wandering thoughts and emotions. Fear, despair, too strong an attachment and other thoughts may all hinder the dying from departing in peace. At the same time our accepting love, our presence offering power and support may help them. It can often be very trying to stay alone with a dying or a dead person. But there are quite a few people who overcome their aversion and anxieties and experience the feeling of joy that can be as familiar as sadness.
Marie de Hennezel, who meets death on a daily basis because of her work, recounts one such joyful experience. In her last hour, a ninety-one year old woman told her with delight and wisdom that
“‘Life, my dear child, gives itself to those who grab hold of it with two hands. Do not fear a thing, live! Experience everything that offers itself as all, all is God’s gift.’
There is passion and fire in this last message this side of death. [says de Hennezel] I just dropped in on her, almost as a stranger, and this old dying woman talked to me about life. On leaving the room, I was taken by an ardent desire to live and love. I felt that this old woman had breathed on the flame of my life with all her remaining strength. An unexpected gift.” (de Hennezel, 1997. p.176)
On another occasion in the hospital she underwent perhaps the most self-abandoning moment of her life because of her experience of a dying person:
“When I left Daniele, I suddenly felt the desire to run on the grass barefoot, to become intoxicated by my movements. I got into my car and I drove to the park of the Castle of Sceaux. It was mild and the days were getting noticeably longer. I was running, twirling and spinning on the huge grass area in front of the castle with infinite joy. I felt the warm and damp soil under my feet. I thanked life and Daniele for this conscious, hot and joyful moment.” (de Hennezel, 1997. p.148)
Alaine Polcz’s first encounter with a dead person was in his secondary school years, at a summer practice.
“I entered the room during the quiet midday hours. A boy was lying there, naked on a wire mattress. In the first minute I did not dare to look at him. I looked out of the window, it was a dazzling summer day. Then I turned towards the boy and at that moment a light, floating feeling came to me. It is very difficult to give a rational explanation for it, but I sensed the feeling of joy. The boy died and was liberated from his sufferings… After the face and body of the boy, when I looked out of the window again, I saw a sunlit cortex. This filled me with extra happiness, the joy of life–and the two together made it complete.” (Polcz, 1989, p.27)
These gifts are not given to superficial spectators. An open heart, trust and submission is required.
Fear or flow experience?
There is a so-called ‘professional kindness’ or ‘hospice smile’, ‘hospice voice’ in the profession of assisting. It is a ready-made pattern, a self-defence mechanism, a constantly available safety belt. Remaining outside and keeping a distance is what certain experts recommend. It is understandable as a kind of survival strategy; some arguments can also be raised for it from the patient’s side. Witnessing suffering we start our defence reflexes instinctively: we start acting vehemently around the patient, we arrange things, we abstract, we distance and even reject, and who knows what else. The human mind is very creative if activated by fear or anxiety. These are well-known solutions. The purpose of this study is to show another way that makes it possible to allow a person who is fighting illness, physical and psychological suffering close to us in the knowledge that we are not threatened, what is more we may even go through an elevating, enriching experience.
The importance of active listening is taught in a wide number of forums today, in business life, politics and anywhere where human communication takes place. To emphasise this is important simply because communication breakdown with dying people can make people forget about even this principle thesis. The real statement of this study is that those who are able to create an inner silence and make room for an empathetic and understanding attention with a presence (or rather when they are capable of these) may undergo a flow experience. “Centre and centre” can meet, two people may connect at a higher level and one may experience that, in actual fact, we are all one.
But the passing moment leaves its mark: the helper is not the same person as before. There has been a conclusive change in the structure of their personality and every single genuine meeting is a further step on the road to spiritual enrichment and development.
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