Not Dead but Not Alive; The terminally unhealed languish in America’s hospitals.

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May lay in a hospital bed, her wrinkled and mottled skin covered with leads, and sensors that monitored her every breath and heartbeat. A camera that was mounted on the wall allowed a doctor to zoom in closely enough to count her tattered eyelashes. 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 myriad 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. “They told me before to let her die, but I didn’t listen to them, I told them to treat her anyway, and she made it through. I didn’t give up on her then and I’m not going to now”, 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.

Doctors worked on her for more than a week,  treating her pneumonia with powerful antibiotics. But even as her pneumonia cleared, her body withered. Her skin hung from her bones as her muscles wasted away, her eyes hollowed, and the skin of her arms filled with bruises as nurses struggled to find a place from which to draw blood. On the second Sunday of her ICU stay, the doctors tried a “trial extubation”. As the family understood it, her lungs had improved to the point that she might be able to be taken off the ventilator, but her body was now so weak, they did not know whether she would actually be able to breathe on her own. If she had to be put back on the ventilator, the doctors told them, she would require a tracheostomy that would allow her to live on the ventilator long term.  The social worker would then seek placement in a long term facility for patients on long term ventilators, essentially a hybrid hospital, rehab, and nursing home in one. Her breathing failed within minutes of being taken off the ventilator, and she was immediately put back on life support.

It was the following day, Monday morning, that I met with May’s family to discuss what had happened the day before, 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 unkept, his thick shock of gray hair was whirled and tangled, his flannel shirt partly tucked into ripped and stained jeans. He gave the impression of someone who had not been taking care of himself, let alone someone who could take care of his chronically ill wife. His visage upon seeing me betrayed both surprise and regret as he recognized me from four months earlier.  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 while her daughters went to work.  She had a son who lived on the other side of the country but kept in touch, they made sure that they got together every Easter, and either Thanksgiving or Christmas. In that way the family would all be together at least twice per year. She hadn’t always been religious but since her grandchildren were born she made it a point to go to church more often 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 3 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 better yet, not walk at all. Her husband did all the driving, her daughters pitched in to do all the cooking and cleaning. Their care of their parents was exemplary. Together they made sure the house was clean, and refrigerator was always well stocked with fresh food, their parents wanted for nothing. The elderly couple rarely had to leave the house and indeed, they rarely did. May left the house only for doctor’s appointments or holidays when there were special events at church. But May’s increasing dependence didn’t sit well with her. She had been a proud mother and grandmother, a caregiver for her husband, 3 children, and grandchildren, a matriarch of her family. Now suddenly she needed help with everything, her lost independence left her sullen and depressed, she became increasingly withdrawn.  

These were things that I discovered during my first meeting with the family four months earlier, gleaned from multiple discussions with her daughters and her husband. May had just had a second stroke, it left her unable to swallow, and caused her words to come out in a nonsensical jumble, something her neurologist had described as a “word salad”. Her inability to swallow her own secretions had caused her develop a pneumonia, and her respiratory status was declining quickly, to the point that she would need to be put on a ventilator soon. I spoke with Daniel and his daughters and described what was likely to come. She never really recovered from the first stroke, I explained, and it was likely that this second stroke would leave her much worse off. She would not be able to walk, she might not be able to eat, and would probably require a feeding tube to get in enough nutrition to keep her alive. And lastly, I cautioned, she would be too dependent to go home, she would likely spend the rest of her life in a nursing home, fed through a tube. “In other words”, I told them, “I can save her life, but I’m not sure the life she would be living would be something that she would want”

“Well doc” said Daniel, “I’m not ready to give up on her, I want you to do everything you can to give her every chance possible to recover”

I put May on the ventilator a few minutes later and treated her for pneumonia. The infection cleared and she was freed from the ventilator 5 days later. She was still not able to swallow and had a feeding tube placed before she was sent to a nursing home.

Since then she had been in and out of the hospital for various issues,  first a pneumonia, then, abnormal heart rhythms, and again for gastrointestinal bleeding. Each time, she was treated for the new problem, got better, and went back to the nursing home. Her underlying maladies remained.  Her family visited her often, they found that her speech had improved somewhat. Despite her frustrations at not being able to put a full sentence together, she could communicate basic things to her family and her care providers. At the nursing home, she learned to hold a toothbrush and move her head in such a way that she was able to brush her teeth by herself. She was now able to eat a pureed and thickened diet, though she still needed to be fed through the feeding tube in her  stomach to get in enough calories to keep her alive. Her husband was pleased with her progress though he was not able to come in as often as he liked. He could no longer drive and needed to wait until his daughters were free to bring him in for a visit. Despite May’s progress, she remained unable to walk or get out of bed, and depended on caregivers for basic activities like bathing, going to the bathroom, and being transferred from her bed to a wheelchair or a recliner.

I met Daniel for the second time that Monday, and together with his daughters discussed  the next steps in May’s care. It didn’t appear that she could be liberated from the ventilator,  and she would need a tracheostomy. She would need a surgery to create a hole in her throat, where the ventilator would be attached. This would give her the best chance of weaning off the ventilator, and 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. However I made it clear that recovery for her was unlikely to happen. “This is a time to look back and reflect on where we’ve been and where we’re going” I told them. “We have two options, we can either continue to try to see if she is going to get better, which is highly unlikely, or we can change the goals of what we’re trying to accomplish” I said. Daniel looked at me, a question forming in his furrowed brow.

“We can change the goal of our care. Instead of trying to make her better, we can move forward with the goal of trying to keep her comfortable. As such we could remove the tubes, stop the treatments that aren’t accomplishing anything, and allow her to pass naturally. Our goal would be to keep her comfortable rather that to extend her life, and to make sure that we preserve her comfort and dignity”

After a few moments, Daniel broke the silence “You’re saying you want me to just let her die” Daniel muttered, half a statement and half an accusation.  His eyes went from me to the floor.  His visage was blank, he was plainly too exhausted to consider anything other than the notion that had been driving him for the past year. The notion that his wife of 47 years would come back to him. His daughter motioned me into the hallway, where I followed her. “I understand what you’re saying, me and my sister have known this moment would come for a long time. It’s just. . .”  the emotion broke through her face, but in a moment she suppressed the anguish “he’s really having a hard time processing this, I don’t think he’s ready” She asked to delay the decision for a few days while she and her sister spoke with their father. I reiterated what my recommendation would be but stressed that I would help and support them regardless of what their decision was.

I didn’t see Daniel again until a few days later, a nurse told me that one of May’s daughters was in her room and wanted to speak with me. Daniel and May’s oldest daughter were in her hospital room. They stood up and shook my hand, as I entered the room, a sign of respect that they always observed. “We thought about what you said, Doc” said Daniel. “And what you said about how she’s not going to get better” tears started to well up in his eyes. Do the right thing, I thought Don’t be selfish.

“I think we would like to do the tracheostomy”

No, don’t do this!  “I understand” I said.

“They said before she was going to die, and she didn’t, and I’m not ready to let her go”

You bastard! 

“I understand” I said,  “we’ll proceed with the procedure, let me know of anything else I can do to help you”.

You selfish bastard!

The tracheostomy was performed the next day. By now she had completed her course of antibiotics, and there was little we were doing for May other other than sustaining her life with the ventilator, feeding her, keeping her clean, and collecting her effluents. The social worker had begun the process of looking for an LTAC facility where she would go long term. May’s insurance was through her husbands plan, they were lucky enough to have a solid pension and health coverage in retirement after years of working in a union.  But we ran into problems. Her insurance was pushing back on the request for coverage. She had already used up nearly all of the rehab days allotted under her plan, and in addition, she did not have coverage for LTAC care. We went back and forth with May’s insurance company. Our requests for referral and coverage would be bounced repeatedly in a triangle between the hospital, the LTAC, and May’s insurance company.

Each fax would be returned a few days later with a denial of coverage, and each time the social worker would ask that the request be escalated, and escalated further, followed by an appeal, only to  be rejected again. Meanwhile a week went by, then another. 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, and her insurance continued to pay for,  in the ICU.

I wonder if we should have checked with her insurance coverage before presenting potential plan of care options. Perhaps Daniel would  have made a different choice if he had known that May would not be able to leave the hospital. But this is not a situation that we have dealt with before. 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. Having now been unable to find May placement in a local facility, we’re now looking at potential facilities out of state that might accept her.

May’s family still come to visit her, but their visits have become less frequent. 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, M.D. is a Pulmonary, Critical Care, Sleep Medicine physician, and CHEST Journal Social Media Editor. He blogs at Caduceusblog and the CHEST Thought Leaders Blog. He is on twitter @Caduceusblogger.