By Bob Barnes
The patient, an elderly Native American man, was dying. He was lying in an ICU bed, being kept alive by a ventilator, his life slowly ebbing away. As the unit chaplain, I had spoken briefly with his daughter, Ann (not her real name), a few times as she wrestled with difficult life-and-death decisions. She hadn’t wanted anything.
On this particular day I was paged to his bedside. Unlike the previous times, Ann was not alone. Several siblings and nieces were also present. Ann told me she had finally decided to withdraw the ventilator. As we sat together contemplating the enormity of this moment for her, a cousin spoke up. “Did you ask him yet?” Ann shook her head.
“Ask me what?” I inquired.
“Oh, nothing. It will never be allowed. Never mind.”
“Well, I can’t possibility know if it’s allowable unless I know what it is.”
Ann took a long, deep breath. She proceeded to talk in great detail about her father’s life, his values, how he spent all of his time outdoors, and how he would never want to die indoors lying in a bed. “If we could just get him outside for even a few minutes, so he could feel the sun on his face. It wouldn’t have to be long, and then we could remove the life support. I know it would mean so much to him, even if he’s not awake.”
I told Ann that I did not know if this would be possible, but that it was worth asking.
I knew that we had a rooftop patio for staff, and that the weather this day was unseasonably warm for springtime in the North. The difficulty was the ventilator and fact that such a thing had never been tried. “Let me see what I can do.”
I asked the patient’s nurse and the charge nurse if they could move the patient to the roof on the vent and withdraw it there. Knowing the patient’s values, both were very excited by the plan but feared that it would not be allowed. Nonetheless, they wanted to try. Together we talked to the family.
The charge nurse literally took charge at this point. She proceeded to get all the necessary permissions, including from the physicians involved, the unit manager, administration, and the legal department. She arranged to have two nurses accompany the patient, and to have a respiratory therapist present for the transfer and extubation. Security asked all staff to vacate the patio so the family could have privacy. The arrangements came together incredibly fast considering their complexity.
At the appointed hour, a very strange-looking caravan moved through the corridors and up the elevator: the patient in his bed, a respiratory therapist at his side blowing air through the vent tube, two nurses, 15 family members and me. The weather was warm and pleasant as we emerged onto the patio, with the sun shining brightly overhead. Someone shouted, “Look, an eagle” and pointed straight up. We all imagined that we could see this important symbol for their culture.
After prayers at the bedside with the family and staff, the ventilator tube was removed. The family members crowded close, holding the patient and talking to him until he died very peacefully about 10 minutes later, the sun still shining brightly on his face.
We all lingered on the patio with the patient and family for some time afterward. Many commented that the patient would never have wanted to die in a hospital, but if he had to do so, that was the way he would have wanted to go. Ann and her family thanked the staff profusely for showing such respect for their culture and for giving them, and her father, what they felt was an incredible final gift. “You can’t possibly know how important this was to us.”
Bob Barnes, BCC, is a staff chaplain at St. Mary’s Medical Center in Duluth, MN.
