ICU or FCU?

ICU or FCU?

Yesterday we had this conversation at home. A conversation about unforeseeable, treasurable yet painful end of life moments.

This conversation happened because of a relative, Beena (name changed), who was in her end of life stage in the ICU. Her husband, Mathunny and their four adult children were in the hospital waiting outside the ICU, frequently peeping through a side window to see her. The son came from Hyderabad. All three daughters flew in from the US. They left their young children in the care of their spouses and got a week’s emergency leave. One of them had a baby a month back and was still recovering from her C-section. They came rushing just to be with their dear mother.

Till a month back, Beena was healthy and strong. They had a full life – traveling, visiting relatives. But, suddenly she fell ill. The biopsy at the hospital revealed that she is in advanced stages of cancer. The deterioration was quick. She was admitted into the ICU. After observing how the situation was worsening, the doctors told the family that they could take her home. However, the family decided to have the care at the hospital rather than at home where an emergency response was not possible. Situation was grim and her internal organs were failing one by one. Doctors told the family to call the children and inform everyone else who may want to visit.

When the children came in, she was able to recognize and respond to them. Since it was ICU the visit time was limited and they had to come one by one. When the son came in, he told her that Papa and the daughters are waiting outside the ICU by the window side. She murmured back, “Lucky him” indicating that Mathunny was lucky to have the children with him.

Within a few hours she stopped responding. Mathunny and the children knew the condition was beyond recovery. She was connected to tubes and wires and lay there alone inside. They were exhausted from physical and mental strain but continued to wait outside.

At our home, between us, I asked the question, “Why don’t they bring her outside the ICU and be by her side? This is probably the last opportunity to be by her side when they are all together”. We knew we didn’t have the answers, but started a train of thought.

She is certainly at a point of no return. At best, she may be conscious inside, listening to them and may be she was longing to have them all around her bed. Or at worst, she may have passed out. We don’t know. But the family’s strain was visible. Emotionally drained, they sat in silence. They didn’t want to let go. They kept her in the ICU with that one hope. But also they are yearning to be near her in her last moments. To hug her and squeeze her hands. But they are not allowed to gather around her in the ICU as they would have loved to. It was only a few minutes visit every time.

What is the right thing to do? Is it better to hope against hope and keep her in the ICU or is it right to take her out and gather by her side and celebrate those last moments?

Sometime back, we had another extended family who did what they thought was the right thing. When their father was clearly at the end stage of life, they asked the hospital to bring him from the ICU to the room. All the children sat around the bed and sang to him the songs he liked so much. They discussed those good times they enjoyed with them. They recounted what an awesome father he had been to them. They didn’t know if he was listening. But as they sang, they saw him slip away to his final abode. They were happy they could be with him in those last moments. May be if they had him in the ICU, they could have extended the breathing for a couple of more days, but would have missed this fabulous farewell. Was that better?

Every family has to take a decision at that stage. Without fear, without bias, without the pressure of those who may think differently. Often the immediate family waver and listen to the contradicting comments of others, fearing what others will think if they bring their loved one out of the ICU.

I saw a YouTube video of a family dancing around their father who was at the end of his life. With tubes connected to him from top to bottom, he was listening and smiling and watching their show of love.  The mother was also dancing and in between she went around and held his hand. Sunny Singh was having his end of life journey. And he was enjoying it.

Two days back, we saw the movie, “Aami”, the story of Kamala Das, the unconventional writer. She lived her life on her own terms. A stormy life in the public place. At one point the camera focuses on the crowd sitting around the body of Kamala’s husband. Well into the night, people were sitting near the body. She suddenly prompted all of them to go and sleep. She said, “I want to be alone with Das-ettan. This is the last time we can be together”. To those who were reluctant, she firmly asked to leave the room. Even to all her three children. Then she put off the light and slowly lay down on the floor by her husband’s body, hugging him. She didn’t want anyone to steal her final moments with her husband.

That led to our conversation – about our possible end of life situations. I told Laila that if there was a situation like this, where it was clear that I was exiting, I would like to be near her and spend the time holding her hand rather than be left in the ICU alone. It is important to have that intimacy rather than the tubes extending my breath for a few more days. I will gladly pass away enjoying, relishing, savoring, appreciating those moments of togetherness. She agreed, that is her preference too.

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Family Care Unit is better than an ICU. Moments together in FCU are precious than extended hours alone in ICU.