The fragility of a person near death reveals the profound sense of human dignity. Dr. Richard, a Xaverian Sister and head of a palliative care center, shares her experience: with each person, one must make every effort to connect.
It’s always the relationship with others that gives meaning and flavor to life. However, establishing a connection with someone at the end of life can be difficult: you’re facing someone in pain, and listening to that pain is what makes the relationship possible.
When Self-Esteem Is Lost
As the end of life approaches, the sick, disabled, or elderly person gradually loses their abilities. This dependency makes relationships with others painful: their self-image is altered, their intellectual faculties decline, and they begin to doubt themselves, losing self-esteem. They may think: “I’m no longer who I was. I’m not sure if I can still be loved. Will others tire of me?”
This loss of self-esteem can become so overwhelming that it leads to a desire for death: “I don’t know if they still recognize or love me in this state. It would be better to die than to live like this.” In these cases, we must acknowledge this psychic despair: “I understand what you’re feeling.”
In the final stages, the person lives with uncertainty. Everything becomes alarming: “What will happen to me? How will the illness progress? How will death come? Will I be alone?” Fear of being alone, of losing control, of no longer being able to express oneself, of being entirely at the mercy of others may also trigger deep doubt, even questioning their core beliefs. Yet, through this suffering and loss, something deeper can emerge.
The Sense of Powerlessness in Loved Ones
Family and friends suffer from seeing their loved one in pain. It can be unbearable to be close to someone in physical agony. The sense of powerlessness is immense. It’s painful for close family — spouses, children — not to be able to take the suffering away or fully understand the moral and spiritual torment. Our love, however intense, doesn’t lessen their suffering or prevent death. Each of us faces our solitude. Those with faith may entrust their loved one to God, but even so, we still feel powerless in the face of their suffering.
We must confront our own limitations, a difficult task, especially when time is short, and we long to do more for the other.
The Difficulty of Communication
Another source of suffering for those close to the dying is the growing difficulty in communication, especially in cases of severe illness, advanced age, or the approach of death.
It’s crucial to keep the patient informed about their illness and its progression since they are the most directly affected. Yet, many lies or half-truths are told, not out of malice, but to soften a reality that seems too brutal for both the patient and their loved ones: “Don’t tell them, they don’t need to know.” Information must be given gradually, at the patient’s pace, in an atmosphere of truth and trust, not to hide anything but to ensure it can be heard and understood.
Families often need guidance and support in handling this.
The question, “Am I dying?” can terrify us, but it is rarely asked directly. Usually, the patient will signal their awareness of death through their body’s sensations. They might say, “Do you think I will die soon?” By using the phrase “die soon,” they are already expressing something they feel. Instead of fearing this question, we can reframe it simply: “You said ‘die soon,’ what makes you say that? What are you feeling?” This allows them to guide us in how to respond. Practicing this small technique in a climate of trust helps lessen the fear of words that might hurt. It also makes it okay to hesitate and say, “Your words touch me deeply. I don’t know how to respond”.
Rediscovering Reciprocity
Sometimes verbal communication is no longer possible because the illness affects the brain or speech organs. The patient may be in a semi-coma or too weak to speak. We must all learn “non-verbal” communication—connecting through eyes, hands, or smiles, interpreting small gestures and expressions as words. It’s challenging to stay close to someone without feeling a sense of reciprocity, even though it may still exist. Those experienced with severely disabled individuals know how profoundly their presence can transform us, even when communication seems one-sided.
We must believe in this reciprocity, even when we can’t feel it. Philosopher Paul Ricoeur once said: “When you’re with someone at the end of life, and you can’t communicate, do you leave that room unchanged?” No.
Something happens within us. We are touched, transformed, or in the process of being transformed.
In their great vulnerability, even when they can no longer communicate, just by being close and attentive, that person deeply affects and changes us.
– Dr. Marie-Sylvie Richard, 2004
