In some cases, the whole team will look at it to make sure the treatment is working. or not.
Uncertainty is cruel. Your loved one becomes unwell and visits a doctor for diagnosis. They then undergo a series of treatments.
This sequence of events raises many questions. Will they recover, will their recovery be complete, when will they recover, and how did this disease come about? Many of these questions cannot be answered with certainty.
This is a time when parents often blame themselves for almost everything that happens. Blaming is a very harmful thought process, especially when the blade of blame is turned inward.
Outside of the medical world, many jobs are rooted in data, rules, behavior, and certainty. Coming to the hospital expecting clear answers and a reliable plan is understandable in the context of modern life, where we expect control over outcomes.
However, the human body is special and mysterious. Many parts of the body that are essential for health are hidden from view and are not yet fully understood.
Many functions and structures cannot be easily visualized with technology. For example, cells in the bone marrow and nerve cells in the brain.
Healthcare is often compared to aviation in terms of safety, but unlike airplanes, people are different. This means that no matter how much progress we make in knowledge and treatments, there will always be uncertainty.
When caring for sick patients, we are often faced with seemingly hopeless situations. I have learned that now is exactly when we need hope the most. Ironically, hope is hidden in the folds of uncertainty, so we must go looking for it.
Sociologists such as Hannah Arendt have described concepts closely associated with hope: action, innovation, revolution, social change, and trust. Decades of sociological research have demonstrated that hope can be reliably measured, that hope is malleable, and that hope promotes resilience. Hope is beneficial against many traumatic life events.
Arendt had experienced brutality herself, having been interned in concentration camps, fleeing Europe as a refugee, and then seeking asylum in the United States. She suggested that during difficult life events, such as illness in her family, we witness the imperfection of life and the fragility of the world. This is scary.
Feelings of hope arise from accepting fear and uncertainty, resulting in a positive way of thinking and acting. I have heard many parents say, “Where there is life, there is hope.”
When people want a good outcome, a reasonable outcome, it motivates them to take action.
It can inspire growth and courage in taking on roles and tasks that you previously thought were impossible for you.
Despite the most dire circumstances, families perform amazing acts of hope.
Supporting other families on the ward, telling their stories to raise awareness, fundraising and advocating for change to improve outcomes for the next person affected.
Each of these reflects a desire for something better. These wishes can be for those you love, and they can also be for people you have never met.
When a child is sick and hospitalized, the anxiety is brutal.Photo: Getty
“Amor Mundi” means “love of the world” and means caring for life so that it can continue. Hope gives compassion to others.
Donating blood for a transfusion is a generous act that gives donors a sense of purpose. It's nice to receive a text message a week or so later letting you know your blood has been donated to someone else. It also spreads a little hope that someday, when you need blood, someone will donate it for you.
Organ donation is an incredibly courageous act filled with hope. If something terrible happens and you decide to tell your family that you want to donate your organs if you can't survive, that conversation is born of hope.
It's the hope that someone will live on long after you're gone.
You and your family don't know who is the person who received the call in the middle of the night telling you to rush in for the transplant surgery. However, your family may find some comfort over time from the knowledge you and they have brought into life as much as they could. While one family grieves the loss, another family watches their child, father or sister recover and grow.
When things look hopeless and the future is uncertain, reaching for hope is essential.
Dr Suzanne Crowe, Consultant Pediatric Intensive Care, is Chair of the Medical Council of Ireland.
