There is a deep-rooted and long-standing conviction in modern medicine that the end of life is largely a biological process marked by multiorgan dysfunction with an imperious need for targeted technical and pharmacological interventions. Reducing end-of-life human experience to a biomedical event erodes one of the most meaningful and important life experiences: a complex, intimate encounter toward ourselves, a profound existential and psychological dialog. In this unique dialog, communication provides a means to assure that the humanity of patients is maintained and possibly strengthened. In this encounter with tangible and glimpsed death—perhaps the most visceral, intimate, and profound in our lives—communication is a special place that “saves,” in part, the remainings of ourselves after they are amputated by disease and adversity. Communication reminds us that of as human beings, we not only share a common destiny, which we all call death, but that we have a common need of relationships, communication, and being connected to each other.
Each hour that passes at the end of life is marked by an array of emotions that may include awe, fulfillment, hope, anger, depression, or fear of the unknown more than of death itself in a society that hides, fears, romanticizes, and regards death as an option. Man, confronted with his finitude, does not anguish so much about the moment of death, but the process leading to this inevitable outcome.
The principles of communication in palliative medicine are in many ways the same as those that support good communication practice in other medical contexts. Nonetheless, there are subtle (but crucial) differences in communication at the end of life that ironically often are beyond words and have been best captured through thumbnail sketches along my path as a palliative care physician. The sketches here were collected from encounters with patients, their families, and friends, shared experiences, contemplative moments—a conscious reflection on being, observing and learning from the patients and families I have cared for. Therefore, this text is not a lesson but a sharing.
Sketches from my “life´s pocketbook”
…Communication is recognizing that feelings of distress, fear, anger, and questioning are normal and should be integrated and welcomed with openness. “Death´s walk” can be fulfilling and rewarding and lead to growth. There is a beauty in the process of dying that must be found through being close and bear witness.
…Communication is recognizing what we carry to the interaction with end-of-life patients, our personal experiences, and discommodities. Withdrawing and asking for help is a sign of true strength.
…Communication is recognizing that there is no right or ideal time to communicate. Communication is the ability to accommodate humanly moments in the present context.
…Communication is alertness to the unsaid, "What do patients tell us when they say nothing at all?" and to incomplete and stammered phrases, “I would like all this to end sooner….” Stop and don´t miss the opportunity to hear what one has to say, underlining that this request for attention is welcomed.
…Communication is based on infinite invisible details. There is nothing random about the presence of images, drawings, or photographs placed on patients’ rooms. Such images refer to powerful messages of what patients were before their diseases and physical disfiguration. "This is how I want you to see me and remember me." Such signs can serve as a starting point for deep conversations.
…Communication is using the language of the body of others to reach what words cannot express “… although you cannot speak in words, your body says something about what you are feeling.”
…Communication is to allow…
…Communication is to allow crying as a normal expression that has a time and space within human encounters. Crying is not something strange or far from us.
…Communication is sitting on the chair and being seated on the chair. Too many times taken seats are empty… too empty.
…Communication is to nod with the head more often than we use or speech muscles.
…Limited time does not jeopardize good communication.
…Communication has a powerful, yet simple meaning: ultimately, it means connecting to others. One should exercise and consciously recuperate our natural instinct of being connected to others without calling upon technology. New generations must be taught to reconnect and communicate, and we all have that legacy obligation toward them.
…Communication is allowing the matters of the body and of the heart and soul. Avoiding any one of these expressions of human beings is an exercise of futility and deception. People deserve and search for our full attention.
…Communication is an exercise of witnessing. Many of the questions made have already been answered by its narrator. People want witnesses giving rise to silence as a compassionate, effective, and comforting means of answering back.
…Communication is silence. Silence is not the absence of things, words, meanings. Silence is not the gap between the elements of our speech or the end of some music you heard. Silence is speech itself, the music itself.
…Communication is assuming that in all misunderstanding, you were the responsible element for transmitting poor information. One should rephrase old expressions such as “You didn't understand” to “I did not make myself understood, for I will strive to explain better and more clearly.”
…Communication is allowing people to break, fall, falter, and become the person who needs to be saved and cared for. Communication is assuring that "You know that I am here."
…Communication is avoiding mismatched greetings. What do we know about others’ "Good morning" or "Good afternoon"?
…Communication is “Don´t assume.” We know nothing about people's lives, their suffering, how they feel, and their pain. Suffering is a unique phenomenon. It is up to us to recognize it, witness it, and feel the emergent need to ameliorate it. Therefore, communication is an exercise of compassion and non-abandonment.
…Communication is looking in the eyes.
…more than everything, the greatest danger in communication is the illusion that it occurred without flaws, obstacles, missed opportunities, and, mainly, without the need for our continued questioning and improvement for others’ well-being.
