Each word has a weight. It must be explained, clarified, brought in the best way by the doctor and by those who take care of a person who deals with the challenge with cancer.
Behind every term, from diagnosis to prognosis, from therapy to metastasis, there are realities, stories, sensitivities that must be known, respected, decoded for each one on the basis of their perceptions. Therefore, a real vocabulary is needed that allows to obtain the best communication and helps to build the alliance between those who take care and those who need help.
On this basis it was born a vocabulary with few words, 13. They are the basic terms of the relationship of care in oncology to tell all the meanings, rational and emotional, from the point of view of the doctor and the patient. Helping the doctor to get in touch with the patients’ experiences, and the latter to better understand “the meaning of the words” according to the doctor, is the goal of Emotional Dictionary – Atlas of Keywords in Oncology created by Giuseppe Antonelli, Full Professor of Italian Linguistics, University of Pavia, as part of the communication campaign “The sense of words – Another communication is possible.”
How to behave
Words such as diagnosis, prognosis, relapse, metastases, pronounced by specialists, nurses and listened to by patients and their carers, often resonate differently between those who care and those who are treated, hiding emotions, moods, unexpressed needs, in addition to those closely related to therapy.
The dictionary was developed on the basis of a consultation which – through sentiment analyzes, online surveys and comparison meetings – revealed the meanings attributed by specialists, patients and caregivers to 13 keywords identified by the campaign board.
“The Emotional Dictionary focuses on the centrality of the linguistic dimension in the treatment process to help establish a doctor-patient dialogue based on mutual trust – says Antonelli. Value the emotional investment that each patient works on the specialized lexicon, that personal coloring which gives the technical terms unexpected and highly subjective meanings.
Each entry in the dictionary is designed precisely to bring out these nuances of meaning in which the need for a relationship, for dialogue with the doctor becomes more evident “. The keywords of oncological diseases are not only part of the technical background of doctors and nurses, but have entered the lexicon of the more than 3,600,000 Italians who have had a diagnosis of cancer, their families and caregivers.
The emotional weight of oncological disease, however, amplifies, multiplies and expands the meanings associated with each term, charging them with an emotional tension that contrasts with the precision and neutrality of the technical language used by the doctor.
For example, the word “diagnosis” – which for the doctor indicates the communication of a clinical judgment and a first certainty to focus on the disease – for the patient is associated with an experience of pain and loneliness associated with a strong image such as that of an ax suspended above one’s head.
On the contrary, the word remission is experienced by patients as equivalent to liberation, return to normality, while for the doctor it is only the attenuation or regression of the symptoms that must be communicated without feeding illusory hopes.
The needs of those facing cancer
Today the dictionary represents an additional tool to support doctors, patients and caregivers to try to find common ground for communication and improve the care relationship.
From the consultation that preceded the drafting of the Dictionary However, numerous areas of need have emerged to be addressed in order to overcome the misalignment in communication, which amplifies the patient’s psychological distress and has a significant impact on his ability to live with the disease, adhere to therapy, manage social relationships and professional reintegration.
In addition to the lack of specific training in the operators to manage the heavy emotional load and the information need of patients, organizational shortcomings, crowding of clinics and “administrative” burden weigh.
The caregiver, or the family member who informally takes care of the care and support of the patient, could play a liaison role to bridge the gap in communication between patient and doctor, but must often in turn cope with a strong emotional load.
On these needs – as well as on the spread of Dictionary – the Associations supporting the campaign will work in the coming months, with the aim of sensitizing institutions to adopt interventions to improve communication and listening in oncology through the enhancement of the communication skills of doctors and nurses, psychological support for the patient and family members and specific training for caregivers in managing their emotional reactions and problems related to the care activity, in particular those relating to the relationship with the patient and communication with the doctor.
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