Looking Beyond the Tissue Box, the Art of Letting Go

The line of white coats came filing into the small, beige room and methodically sat at the table across from the family. I immediately recognized the centerpiece, a small tissue box, marking the divide between the health care team and the patient’s loved one. It is a scene I am far too familiar with, and I knew my wounds were still open, my memories still too fresh. I spent the rest of that family meeting staring at the tissue box, listening to the dialog between the palliative care team and the grieving husband, trying my best not to relate. I knew if I looked away from the tissues I would expose myself, and I chose to avoid the inevitable pain eye contact would trigger in my fragile state.

The patient was a 72-year-old female who was readmitted for aspiration pneumonia after recently suffering a stroke, and currently in the ICU on a ventilator. During morning rounds, the patient’s husband wanted to discuss tracheostomy and feeding tube placement. His request was met by my attending’s cleverly disguised phrase, “Let’s sit down together this afternoon and discuss goals of care.” The husband did not stand a chance.

When we first walked into the beige room that afternoon, the sweet elderly man looked elated by the amount of attention that surrounded him. He smoothed against the table a crisp sheet of paper upon which he had meticulously wrote out every question he wished to discuss with this impressive fleet of doctors. But it was obvious what we were here to do, and it was too painful to watch the flurry of white coats swarm. The palliative care physician led the charge as she artfully phrased well-rehearsed questions and concerns. She held back any bias and elicited the untampered understandings and wishes of the patient’s husband before anyone else spoke. Yet despite the gentle wording, the underlying message that the doctors were trying to get across the table was clear: “Your wife is going to die, and feeding or breathing tubes will only prolong the inevitable.”

Without fail, we were able to elaborate on the realities of mechanical ventilation and artificial nutrition. Within thirty minutes, we had broken this man down into understanding that he would be inflicting more harm onto his wife of fifty years by placing artificial tubes. The feeling of success on our side of the table was tangible. We had explained the medicine well, and the husband understood. Our job was done. I got up to leave with the rest of the palliative team, and for the first time I let my eyes drift away from the tissue box and to that crisp sheet of paper with those thoughtful questions.

It hit me hard. I imagined the length of time it likely took the elderly man to steady his tremulous hand and write out every line. I glanced back at the once elated husband now sunken in his chair. That prior feeling of triumph was making me nauseous and ashamed. The purpose of these meetings is to hear the wishes of the family. Yet, we are also supposed to provide the facts. And with these facts comes the blunt and biased truths of what a physician deems appropriate quality of life. I cannot help but feel like a hypocrite when I sit on the side of the white coats. It was not too long ago that I had been on the other side of the tissues, sunken down in the same chair as the husband sat now.

I did not undergo a successful palliative care intervention. I battled through multiple family meetings and made the doctors of my teaching hospital incredibly frustrated every time they gathered around a tissue box with me.

As the only member of my family with a medical background, I assumed the role of advocate and primary caregiver of my father. My dad had Parkinson’s, a disease that took everything from him. A once brilliant mind and athletic build began wasting away as the Lewy body dementia started settling in. As his little girl now transformed into his caretaker, I was terrified. I did everything to prepare myself. While he was still lucid, I had him fill out every bit of paperwork imaginable and forced him to make decisions for various health care scenarios. I was adamant about never having to make decisions; I would just echo the choices he had already made. I thought this would be the only way to protect myself, if I did exactly what he said he wanted, then maybe I could make it through.

I was wrong. I was naïve to think there could be a simple solution to protect or prepare oneself for choosing the death of the person they love most in this world. Originally, his main concern was being a burden. A physician himself, he was a practical, unassuming man. I imagined he would want a simple goodbye without bells or whistles. But I was not letting myself imagine or assume; I was going to do whatever he told me he wanted.

I brought up code status again after his third ICU stay. I felt that I was back in the small, beige room, on the side of health care team again. Sitting on the edge of my dad’s hospital bed, I illustrated the horrors of chest compressions. I had participated in my first code just a few weeks prior, and the feeling of frail ribs cracking underneath my palms still haunted me. And though my dad’s mind was growing foggier, his voice was clear, “I want chest compressions. I want the best medical care.”

I constantly had to relay to his doctors that while I understood the severity of his illness, I could not go against his clearly stated wishes. For me, no matter how strong the hallucination or tangential the thought, I could not ignore what my dad was telling me. My father wanted to live. He wanted a chance to go home again, spend one more Christmas morning with his kids, see his rose garden bloom for the last time, and take care of the golden retriever who never left his side.

And after a series of treatments for acute, near fatal events, I eventually brought my dad home with a PEG tube, a permanent tracheostomy, and a PICC line for easy access. I took a year off medical school to make the most out of the time I had left with him. I was able to hire and train four caregivers to help me take 24/7 care of him. Things were good, and everyone was happy, or so I thought.

It was coming to the end of the month, and our 72-year-old female patient was successfully weaned from the ventilator. We arranged a second palliative care meeting, this time with the patient directly. We were able to discuss goals of care and realized she did indeed want a feeding tube and tracheostomy to help prevent her from having to return to the hospital each time she aspirated a meal. Again, we tried to explain that these tubes may increase her chances of aspirating or decrease her quality of life. She stopped us midsentence and said something that I will never forget: “My husband is not ready to let me go yet. I want to be able to give him the time he needs.”

There was no counterpoint from our end, and the small room fell silent. I quickly retreated to the security of a locked gaze with that tissue box and let the gravity of her words sink in. For the first time, I saw it from the health care’s side of the table, and the new view terrified me and continues to keep me up at night.

Was it possible? Could my dad have been telling me what I wanted to hear? Was he just giving me the time I needed to let go, giving me a chance to fight the goodbye? I based every decision on questions I personally had asked him. My dad lived for his children; he would do anything for us. Did he really want to spend his last year hooked up to tubes controlled by his daughter? Or was that for me?

I will never know the right answer, despite the sleepless nights of retracing every decision that was made. But I realize now that there is no right answer when it comes to losing a loved one. There never will be. Every family in those small, beige rooms is different. I see this now when I look beyond the tissue box and into the faces of people trying to deal with life’s impossible decision of when to let go.

Declarations

Conflict of Interest

The authors declare that they do not have a conflict of interest.