This blog is written by and published under permission of Areeba Jawed, MD
Over the last few weeks, I have communicated with numerous families whose loved ones were hospitalized with COVID 19 related complications as a palliative care fellow at a county hospital in Indianapolis. Due to imposed visitation restrictions, family members were unable to visit patients admitted to the hospital and we functioned as a communication arm for the ICU team. I spent hours on the phone with families breaking down the daily changes in clinical status and bridging the various pieces of medical information together to formulate a headline which was clear, concise and relayed our concerns. I precariously walked the thin line between not depriving them of hope while preparing for an outcome which may be emotionally devastating.
In the voices of these families, I heard deep sorrow, hounding fear of loss, glimmers of hope and endless gratitude for the care provided by the hospital staff. A uniform theme was one of helplessness. Children of elderly patients and parents to young adults likewise described being haunted by guilt for having to leave their loved one alone in the hospital. Spouses who had never imagined being unable to care for their partners were frustrated and grieving. I wondered about the enormity of the trust families were being asked to place in us as they often got together in virtual groups across a lifeless electronic device to hear the hum of their loved one’s breathing machine and trace the tubes and drains which seemed to run together. I worried if the picture I’d painted with my daily phone calls had prepared them for what they were about to see. Despite my yearlong training in communication skills, I continually was at a loss for words; what does one say to a wife who cannot be by the death bed of her husband of four decades? How does one comfort children of a 43-year-old, who watch their mother pass away on facetime?
Practicing medicine during the pandemic defies many aspects of palliation which we value. As palliative care physicians, it’s not death we are uncomfortable with nor is death a failure of medicine in our eyes. An integral part of what we do focuses on cherishing one’s end of life and helping bring each person’s story to that perfect ending they desire however that might look. In the COVID 19 era I, like many others, feel as though my hands are tied. I feel inadequate. I struggle with my own helplessness. I shed tears behind closed doors and in empty stairwells.
Days and people begin to run into each other as each story starts with Covid 19. Now more than ever we must value the ability to stay grounded so we can take care of ourselves and that next person who needs us. We must focus on our little successes – like setting up a YouTube channel with songs in a mothers voice that her daughter listened to all day, getting a sixty year old his favorite drink before he slept into oblivion, saying aloud the “I love you” that a patient unsuccessfully mouthed to his family on FaceTime, reconnecting a zoom call every 40 minutes so family witnessed that last breath of their loved one.
Nothing could have prepared us for what was asked of us in the last few weeks and the enormity of the task ahead of us is daunting to say the least. In Khalil Gibran’s words may we all become the ocean that awaits us.
“The river needs to take the risk
of entering the ocean
because only then will fear disappear,
because that’s where the river will know
it’s not about disappearing into the ocean,
but of becoming the ocean.”