Grieving the end of life experience from an ICU nurse

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The image of patients dying in the intensive care unit is changing. Over the phone, family members cry on the other end as I tell them that we are not allowing visitors due to “the coronavirus” at this time. They tell me, “but I help make his decisions for him.” These decisions now have to be made over the phone.

This is just what we have to do to keep society safe.

I am an RN working on the frontlines in a thirteen bed ICU with an attached four-bed surgical ICU. These beds are rarely full. Today, they remain full of individuals on ventilator support, all testing positive for COVID-19. Our unit is now the designated COVID-19 ICU.

They are not improving.

Family members call the nurses’ phones, and they ask how their loved one is doing today. They are unable to be at the bedside due to visitor restrictions. So, when I tell them “he or she is not doing well today,” they don’t know that I mean that they are not improving, that they will probably not make it off of that ventilator, that the next time they will see their loved one, will be when they pass away in this unit.

Difficult decisions will have to be made by family members and advocates. Decisions that are inevitable, like removing ventilator support and making the patient comfortable.  Decisions like changing their code status to NO CPR, decisions to place their family member in hospice care.

These were tough and morally distressing judgment calls to make when visiting hours were not restricted. I can not imagine the difficulty and moral distress felt by these individuals now.

The last image many of these families will have of their loved one is that of the patient lying in bed, being assisted by a ventilator and other machines.

When one woman had tested positive for COVID-19, her family had made the decision to withdraw ventilator support. For these extreme end of life circumstances, for now, two visitors were allowed at the bedside. Her family members were placed in yellow isolation gowns, a mask, and a face shield. They held her hand with their own gloved hands. The patient wore a mask. After administering comfort care medications, knowing that it would only be a matter of hours that this loved individual had left on this earth, I stepped to the corner and cried through my N95 mask, as I reminisced about how beautiful and sobering this scene used to be, not even a few months ago.

I loved the families that would be at the bedside daily. I loved seeing a dying patient covered in warm blankets, sometimes with their own robes or homemade blankets on top of them, in a room full of their loved ones. I loved seeing these families tend to their dying mother, brother, sister, or child- washing their faces, lotioning their hands, singing to them, playing music. I loved seeing families, sometimes up to thirty people at the bedside, sharing memories, and laughing.

I loved sneaking boxes of tissues in the room and letting patients enjoy their final days or hours with those who mattered most, doing what they loved most- being together, while I silently snuck around the room doing what needed to be done. I am grieving for those who will not be able to have a beautiful end of life experience. People are dying from COVID-19, and many will be dying alone. Without a solution to this crippling isolation created in the wake of this virus, I fear that it will leave families scarred and with complicated grief patterns. I can’t hold their hands. I can’t cry with them. I don’t know how to help them.

Alexandria Frangedak is a critical care nurse.

Image credit: Shutterstock.com

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