We need silence in the noise of a pandemic

THERE is so much noise in this pandemic – a constant barrage of words and numbers, daily updates of infections, hospital and vaccine rates, dollars spent, and number of deaths. We talk at each other in small groups about what we could have done better. We yell at each other on social media and in the streets about what we should do next. With so much noise, there is no space to listen.

At the centre of this pandemic, we listen – in the silence behind the glass walls of our COVID-19 intensive care units (ICUs), with the sigh of mechanical ventilation replacing laboured breathing, behind our plastic face shields, where the noise is gone.

This silence is needed. It creates space to learn, to understand the patients we care for as people, not just the disease that brought them to us. As our society enters the third year of this pandemic, is it time to be silent, to listen to each other?

As an intensive care specialist, I have learnt that silence is the first crucial step in delivering person-centred care. If we ask, then stay silent and listen, patients will tell us what they value, their goals, what they are prepared to lose, and what is not negotiable.

When the patients cannot speak, we ask their families to provide this voice. We ask them to send us photos that we laminate and stick to the walls of their loved one’s room. Photos that show patients as people, upright, in their clothes, surrounded by those they love, in the places they cherish, doing what they enjoy. These stories and images build a picture of patients as people, and allow us to provide care aligned with what matters to them. This picture starts with a blank canvas of silence.

It is not easy for families or health care workers to do this. Silence is not naturally comfortable for most of us, particularly when it seems heavy with emotion. As clinicians we tend to fill the long pauses, while patients and families gather their thoughts, with a barrage of numbers, facts, prognostic percentages, and opinions. When we do this, we stop listening, families stop talking, and we replace patient voice with our noise. We risk losing sight of the person, reducing them to a disease or physiology, at worst a numerical response to treatment. We risk creating an outcome they do not want or cannot tolerate.

Over the past 2 years of COVID-19, when I have stopped and listened, I have heard a lot in this silence.

I have heard what patients value, what they are afraid of losing, and what they have lost. I have met patients in COVID-19 restricted hospitals who are separated from their loved ones and alone. I have witnessed the sadness of elderly men and women entering hospital with a new diagnosis of cancer or sudden deterioration in a long-standing disease. In a world with no hospital visitors, they were lonely. When leaving home meant their partner had to enter care, they were overcome with guilt. If their admission was for weeks or months, they were devastated by the knowledge they may never see their partner again, may die apart after a lifetime together.

I have seen the shock and grief of young mothers and fathers after emerging from unconsciousness and mechanical ventilation, required while their lungs recovered from severe COVID-19 pneumonia, to realise they had not seen their children for months.

It is clear what we value, what we do not want to lose.

I have heard what my colleagues are giving up for each other, and for our community, and I am worried. There is more of everything that is hard, less of what is joyful. More hours, sicker patients, more personal protective equipment, more distress, and more anger from isolated families.

Our ICU doctors and nurses are anxious about what they are losing or have lost – time with families, friends, sleep, exercise, holidays, or to just be alone. They feel guilty they have abandoned personal responsibilities, parenting children, the needs of elderly parents, supporting family and friends. They feel a sense of duty to each other and to our community. They are grateful for colleagues who have asked how they can help, listened to the answers, then turned up to care for patients, cut back to reduce the demand on our system, or talked to distressed families for us. They are grateful to community groups who have fed or entertained us. They are daunted by the reality that this is not over and fearful they cannot continue this relentless pace.

I have heard and seen what my community has lost and what may be intolerable.

In 2021, two of my friends died. One died in the lull between lockdowns. His family were at his bedside, and we were able to come together at his funeral as friends and family, to celebrate his life, and to mourn our loss. My other friend died interstate, during widespread lockdowns, and many of us sat alone in rooms around the country, watching a funeral on a screen, before re-entering our normal day. We did not gather, share stories, take time together to ease each other’s loss.

In years to come, I wonder if we will recognise how much we have lost from these lonely funerals, cancelled weddings and skipped major milestones.

I have listened to health leaders from our ICUs, hospitals, emergency services, and governments come together for 2 years to endlessly model and relentlessly plan; to try and build capacity to protect us against the worst of the overwhelmed systems witnessed globally; to wrestle with the logistics and enormity of this seemingly impossible balance of preventing death, while leaving life bearable; to do this year after year. I have, like all of us, watched this spill into our public debate.

It is loud out there, with all of us, in all this noise and numbers. There is less silence, less listening, and a lot to understand. As we start another year with COVID-19, have we stopped and asked each other what we value as a community? What we have lost and may still lose? Have we listened to each other to understand the mental health, economic, multigenerational impact of isolation and pandemic disease? Have we understood the risks of an exhausted hospital workforce?

In the silence of our patient interactions, we learn what matters. Perhaps we should do this next as a society. Damp the noise and listen.

Associate Professor Neil Orford is part of the Australian and New Zealand Intensive Care Research Centre at Monash University, as well as the Department of Critical Care, at the University of Melbourne. He is Associate Professor in Intensive Care in the School of Medicine at Deakin University. He is a Board Member of the College of Intensive Care Medicine of Australia and New Zealand.

 

 

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.