Bearing witness: The power of presence

By Aline Demerjian

It was a routine day in our bustling critical care unit: alarms and phones ringing, staff rushing around doing the numerous things that need to be done at any given time. When suddenly, everything stopped. An eighteen-year-old had been brought in by ambulance, unresponsive. The young woman was stabilized enough to make the elevator trip one floor up to our unit. While the team continued their life saving interventions, I escorted her family upstairs. Our team’s efforts were unsuccessful; the young woman died in the presence of her mother, father, and younger brother. Time seemed to stand still. Everyone was distraught, but none more than that family.

I asked myself: what could we do in their moment of overwhelming grief? I distinctly remember going into the patient’s room where her mother was sitting in a chair near the bed, quietly crying. With tears in my own eyes, I crouched down in front of her, looked at her person to person. I could not imagine the pain she was experiencing. But I could silently communicate: “You are not alone. I see you. I see your pain.”

Times of crisis and immense emotional pain are hard to describe. The world stops and speeds up at the same time. It is unbearable yet inescapable. If you are lucky, you are not alone during these experiences. I am a social worker in a large critical care unit. Sadness and tragedy are our norm. We help families to make unbelievably difficult decisions and support them through the process. I cannot take their pain away, I cannot change their reality. However, I can stand with them, share with them, cry with them. I can bear witness.

Everyone wants to “do” something to help. But there is not always something to “do.” Social workers are tasked with most things to do with emotions. Sometimes all I can do is be present. It feels helpless. But there are some ways to approach emotional suffering that can help: take their lead, give them space to be alone, make small talk, offer to call someone close. Focus on the here-and-now: offer water, a place to sit, physical proximity, a warm blanket. Get their questions answered by the medical team. Begin to prepare the family for the possibility of a bad outcome.

Social work is one of many helping professions in the hospital. Part of what makes our role unique is our focus on communication and relationship building. It takes time and trust to establish a connection with a person, one which would allow for the truth and hard work that must be shared. In a hospital setting, particularly in a busy critical care unit or emergency department, the social worker must be able establish rapport quickly. Empathy, openness, and calm must be conveyed within minutes to enable the building of trust. We are seeing people at their most vulnerable, when they are overwhelmed with both information and emotions, when they feel helpless. Our aim is to relieve that suffering, if only a little.

Grief presents in many ways, and we often don’t know what to do with it. There is loud noise coming from the family room and staff turn to me to fix it. We stop and listen for a moment: the noise is chanting, praying, crying. Teams tend to get very uncomfortable with outward expressions of emotion. But what is crying in this context if not an outward expression of the grief that someone is feeling? What is prayer if not an expression of hope? What is wailing, chanting, pacing, hand-wringing if not a way to let out the pain felt inside? We must make space for all these forms of expression for they are normal responses to tremendous anguish.

Patients in the critical care unit are usually too sick to be conscious. So I work with their families to discover the person we’ve been tasked to care for. My offer of “help” looks different for each family I support. I learn the patient and family’s value system, strengths, and barriers; because this informs how I engage and help them. I hear their story; I ask for their version of what is happening to their loved one. This often helps me understand how much they are absorbing of the reality unfolding in front of them.

A nurse is concerned two siblings aren’t grasping the gravity of their father’s stroke. I introduce myself, explain my role is to help support families when they have a loved one in the critical care unit. They tell me they want to know if their dad is going to need a cane or a walker when he comes home. I learn their dad is mom’s caregiver since her heart attack, so they don’t want her to see him till he is on the mend. He won’t mend – they’ve been told this, but they haven’t heard it yet. I hear them out, knowing their lives are being altered forever. It’s common that family members do not register what doctors tell them. My work is to figure out why.

It is easier to deny tragedy than it is to feel its weight. But slowly, we move a little, together. Whether it is over minutes, hours, days, or longer, we will move to acceptance of this unbearable reality. Making space and giving time to get there is not easy. Sitting with those feelings and listening to the pleading, is not easy. And in time, we move, even just a little. “What if the doctor is right?” Then I will stand here with you, and we will hear the news together and we will figure out the next steps.

A man, in his seventies, a pillar of his community, steps out of the shower one morning, complaining of a weird feeling in half of his body. He suddenly collapses, an ambulance is called, and he is rushed to the hospital. Scans confirm he has experienced a sudden brain bleed. We watch him for days. His wife tells me she believes in miracles, she will not lose hope. “No,” I say, “we must always have hope for something.” I walk the journey with her from hope for recovery to anticipatory grief. I get to know the family. I sit with them as various doctors give them updates, always accompanied by a terrible prognosis. Some days, they cannot hear it. They don’t want to talk to the doctor again. “Tell me some good news” she says to me. But over days, she moves to acceptance. She cannot be the one to say the words, but through her son, she tells us, “I understand,” and we make a plan to remove her husband of over forty years from life support. “We are not far” I tell her as I leave the room. “You are not alone,” I convey.

It is imperative to know that we are not alone. The family must feel we care – about them and about what is happening. What we “do” is we care. Caring is doing. And sometimes, the only caring we can give, is bearing witness. n H