Hektoen International

A Journal of Medical Humanities

Listening to the patient

Marina Maffoni
Francesca Dionigi

Pavia, Italy

Death and Life by Gustav Klimt

Alex was a smart thirty-nine year old man with drug-resistant lymphoma. In four years he had undergone two unsuccessful bone marrow transplants. That is all my senior psychologist tutor and I were told by the referring clinician, except that the patient himself had asked for psychological support. So we went to see him in his room, as we usually do with inpatients.

At first sight he seemed to be one of the world’s unluckiest men, struggling against such a serious disease. But after a few minutes I understood he was different: his words were different, much stronger.

Still determined to fight against his aggressive cancer, he talked about his wife and his two sons (nine and ten years old) as companions in his battle. He described the family as fully supportive and characterized by openness. He could tell his wife everything and she was always present for him. But there were some communication difficulties. “I cannot speak to her as I’m speaking to you.” He could tell her everything, but not his inner thoughts about dying. “When I try to talk about death, she gets angry and says – don’t speak in this manner! ….. But I’m sure she is thinking about my death and is simply afraid, and I understand her because I am also afraid.” He worried about her and about her burden.

He said his children were wonderful and described them as fully conscious of his disease. “My wife and I have always tried to tell our sons everything … in just the right manner, with the right words.” They had been told of their father’s illness and he described their response as positive. “They love me …..they are children: they cry and then they laugh!”.

Then Alex talked about his youngest child’s response to the failure of the second bone marrow transplant.  Alex’s sister had been the donor. “Daddy, but didn’t my aunt C. help you? She promised!”. Alex described how this upset him and he did not quite know how to come up with a correct and understandable answer. “Darling, your aunt has helped me, but now Daddy needs help once again … to win, to get better.”

Speaking about his sons as his strength, Alex said they were “the most beautiful thing that has happened in my life and the main reason to struggle against cancer.” He was fighting because he knew his little children needed their father, but had come to realize that at this moment he needed them more than they needed him. Then he added, “I wish I could take them to a football match as other fathers do … I wish I could see my sons growing up.”

Alex also gave a realistic picture of his illness, his initial fear and suspicion of the local doctors, how later they recommended a move to a more specialized hospital,  how at present he felt welcome and morally supported by clinicians who had adequately informed him about his health situation.  They were all doing their utmost and he felt free to speak with them.

Yet often Alex also spoke about his inner feelings, how sometimes he wondered if the disease would ever go away. He clearly had doubts about the final outcome and was afraid of dying and losing his family. There were moments of sadness and tears when he asked himself, “All the therapy undergone has never worked. Why should it work this time with a kind of cancer more and more aggressive?”  He had not forgotten the worries and doubts linked to the various failed treatments, and compared himself to his roommate, whose cancer had come back after five years and whose illusions and disillusions he could understand.

What clearly emerged was Alex’s human growth and personal metamorphosis, as well as his spontaneous reevaluation of life and its values. At a certain point he had been against seeking psychological help, feeling that with friends and family he needed nothing more. Later the disease experience led him to discover the value of being able to express his thoughts, worries, doubts, and emotions without judgments or filters. Speaking freely with a stranger simply listening was perceived as important in finding a new balance and an adaptive order in the confusion. Alex considered it effective to “throw out what I have inside me because it makes me feel better,” consequently requesting further psychological support during the subsequent day hospital visits.

After a week the results of the biopsy arrived and there was no good news: bad markers and few chances. Negative feelings, worries, and loss of hope soon ensued as the prospect of losing his sons became nearer and more painful. He thought of dying, appeared more frightened, and confessed he was losing hope. He maintained, however, a combative approach: “Now I start feeling a loss of hope, but I don’t want to surrender … because there is my family, because there are my sons … and then to be honest, I’m tired of always losing battles, now, I want to win this war!”

Indeed he had already won several battles. He had defeated the frightening silence that goes along with cancer. He had spoken freely and spontaneously, laying bare his fears, worries, doubts, and needs. In particular, he was able to communicate openly and to be listened to and supported at a time when he needed it most.

Acknowledgements

The group of the Department of Brain and Behavioral Sciences – University of Pavia (Italy) encouraged the writing of the manuscript with valuable comments and moral support. Special thanks go to Prof. Dr. Pierluigi Politi and Dr. Valentina Martinelli.


MARINA MAFFONI and FRANCESCA DIONIGI are clinical psychologists in the Department of Brain and Behavioral Sciences at the University of Pavia and the IRCCS Policlinico San Matteo Foundation in Pavia, Italy.

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