When someone is not dead but not alive

May lay in a hospital bed, her wrinkled skin covered with sensors that monitored her every breath and heartbeat. Her husband sat at her bedside gently stroking her withering gray hair as her chest moved slowly up and down accompanied by the soft whoosh-whoosh of the ventilator that breathed for her.

He stared expectantly at her face as if at any moment she would rise and free herself from the multiple tubes that sustained her. Her adult daughters sat and stared blankly at the floor, waiting for something — anything. The streams of data transmitted from her body were monitored closely both by a team in a remote electronic-ICU bunker 50 miles away and her ICU nurse 15 feet away. Yet what May could not have realized was that despite her family’s presence at her bedside and the twenty-four-hour care she received, she had been abandoned. She was alone.

Several weeks earlier, May came to the hospital from her nursing home, “yet another pneumonia,” the note in her chart said. “She seems to get one of these every few months,” said her husband, “Can’t we give her something for that?” The emergency room physician explained that she had aspiration, essentially choking on her own food and spit. She would continue to get pneumonia until she eventually passed away.

This wasn’t the first time he had heard this. But she made it through. “I didn’t give up on her then, and I’m not going to now,” he said adding, “she’s a fighter.” Her husband Daniels countenance was such that the emergency physician admitting May to the hospital didn’t bother asking whether his wife should be resuscitated in the event her heart or lungs stopped working, and she needed to be put on life support.

May was admitted to the general medical ward and was started on antibiotics, but she eventually got worse. Sometime in the middle of the night, a nurse found her ashen and struggling to breathe, and called a “code blue.” May’s breathing had gotten so bad that she needed life support, she had a tube put down her trachea and was taken to the ICU where she was put on a ventilator.

On a Monday morning, I met with May’s family; it was the beginning of my ICU week. For May and her family, it was the beginning of their third week in the ICU, and it showed. Her husband, Daniel looked unkempt, his thick shock of gray hair was whirled and tangled, his flannel shirt partly tucked into grease-stained jeans. He recognized me immediately. I was the doctor who told him that May was going to die.

Things hadn’t always been this way. May had once been active and happy. She enjoyed looking after their grandchildren Since her grandchildren were born, she made it a point to go to church and to take them to bible school. Three years ago, however, things started to change. She had a stroke that put her in the hospital for a week, followed by another three weeks in a rehab facility. She came home from the rehab facility strong enough to be able to walk with a walker. She hated it. She preferring to hobble or not walk at all. Her daughters pitched in to do all the cooking and cleaning. Their care of their parents was exemplary. The elderly couple rarely had to leave the house and indeed, rarely did. But May’s increasing dependence didn’t sit well with her. She had been a proud mother and grandmother, a caregiver for her husband, three children, and grandchildren, a matriarch of her family. Now suddenly, she needed help with everything. Her lost independence left her sullen and depressed. She continued to have problems; she was in and out of the hospital several times. Each admission left her weaker and more dependent on others.

I met Daniel for the second time that Monday, and together with his daughters discussed the next steps. She couldn’t be removed from the ventilator. She would need a tracheostomy; this would be necessary for us to move her to an LTAC, a long-term acute care facility that could care for her and help her recover. But I made it clear that recovery unlikely to happen. “We have two options,” I explained, “ we can either continue down this highly unlikely path of cure, or there’s another option. Instead of trying to make her better, we can move forward with the goal of trying to keep her comfortable, to focus on preserving her comfort and dignity rather than her life.”

Daniel broke the silence, muttering, “You’re saying to just let her die?” His eyes fixed on the floor. His daughter motioned me into the hallway. “I understand what you’re saying; me and my sister have known this moment would come for a long time. It’s just, he’s struggling with this.” She asked for a few days time to make a decision.

I saw Daniel again a few days later. “We thought about what you said, doc.”

Do the right thing. I thought: don’t be selfish.

“I think we would like to do the tracheostomy.”

The tracheostomy was performed the next day. But we ran into problems in the search for an LTAC. Her insurance was pushing back; she did not have LTAC coverage. We went back and forth. Meanwhile, a week went by, then another. There was little we were doing for May at this point other than sustaining her, breathing for her, feeding and bathing her. Ironically, had May been transferred to the LTAC, her day-to-day care would have been far cheaper than the care that she continued to receive.

I wonder if Daniel would have made a different choice if he had known that May would not be able to leave the hospital. We are trained that when chronically ill people can’t be removed from life support, they are presented with the option of natural death or transfer to an LTAC facility. It has not been until recently that we are presented with situations where health insurance will not cover these levels of care.

May’s family still comes to visit her. On a good day she will look at them and smile, and squeeze their hands, but on most days she sleeps or stares blankly.

Deep Ramachandran is a pulmonary and critical care physician, and social media co-editor, CHEST. He blogs at CaduceusBlog and ACCP Thought Leaders, and can be reached on Twitter @Caduceusblogger.

Image credit: Shutterstock.com

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