Dr. Jessica Zitter
LinkedIn Healthcare Channel – Hard Cases
The woman was 47 years old and had suffered a devastating stroke three and a half weeks prior. It was the type of stroke which hit the nether regions of the brain, deep in the white matter, where the mysteries of consciousness, speech, and movement lie intertwined. Through a series of unfortunate events, she was now “locked in”–unable to speak or move, but fully aware. The only clue that she had cognitive function lay in the fact that she could blink on command. Her eyes communicated in other ways, too. The pure terror of paralysis emanated from her irises every time I poked my head into her room, begging me to come in and save her from her fate. This was clearly a living hell for her, as, I imagine, it would be for anyone.
Locked-in patients are particularly challenging for me. At first glance, they appear relaxed. Everything looks normal but their eyes. It is as if the horror of the experience is funneled through the one remaining sense, which betrays sheer terror.
I’d been called in as the Palliative Care doctor to help the family come to a place of some understanding and acceptance of this unthinkable tragedy. We are often asked to come in after tragedy has struck and the hubbub has died down, when the family is alone in the room with an incurable illness of any kind. With cases with very poor prognoses, this kind of standstill is common: The patient and family have noticed the decrease in activity and might feel abandoned and lost. The medical team may be daunted by grim and untreatable findings. In this case, the patient’s profound neurologic dysfunction wasn’t treatable, just a bread and butter stroke in a really bad place. And who wants to break that kind of news to people who are depending on you?
The team was in this bind. There was nothing fancy left to do. No MRIs to obtain, no blood tests to await. All we could do was watch as this woman came to the horrific understanding that she had been buried alive, that she was imprisoned in the tomb of her paralyzed body and that no new faces popping in doors had the power to stop it. Her family was in purgatory as well. They were likely aware that this was their new reality. But no one had confirmed it. Hints had been made, of course. “This isn’t looking good” was the closest acknowledgement from a doctor that her fate was probably sealed.
And, at 47 years of age, a poor resident of the inner city, she had no chance of becoming a Stephen Hawking, the celebrity physicist whose progressive motor neuron disease eventually rendered him essentially locked in. His disease had become debilitating only after he had been widely recognized as a brilliant theoretical physicist, renowned worldwide and retained by the greatest universities. He and his wife Jane had plentiful resources and several decades of progressive worsening to adapt to his condition and compensate for his limitations. It was highly unlikely that anyone would be able to find the time or resources to help this woman use blinking and tapping motions to communicate to others. Most likely, she would be sent to a nursing home, where she would lie in a bed until death came. Any potential “improvements” cited by doctors would be essentially irrelevant and possibly misleading. A toe that might move did not mean this woman’s overall condition would change.
Why not go and talk to her directly? Let her decide for herself. Wouldn’t it be possible to work with her at the bedside to identify whether she could grasp the information? Unfortunately, no. She could blink to simple commands such as “blink once, blink twice”, but then what? “Do you know where you are? Blink once for home, twice for hospital, three times for heaven?” Then, once past the logistics, it gets even murkier. “You will never be able to feed yourself again. Blink once if you accept this, twice if you don’t.”
Even waving from the doorway was painful for me, given the desperation in her eyes. I struggled to imagine breaking the reality of this horrific fate on this vulnerable woman. It is equivalent to telling a patient she’s been trapped, and there’s nothing we can do. I can count on one hand the number of locked-in patients to whom I have had to break this news, and I will not forget any of them.
I went to her family for guidance. Did they think that it would be better for her if I told her this news directly, or if we spared her from it? They didn’t know the answer. And so I didn’t talk to her. Call me a coward, but I geared my strategy towards family support. I would spend time with the patient, hold her hand and show her I cared, but I would not talk to her about her condition. Instead, I would focus on those who loved and knew her, supporting them in their process. I told myself that the sin of omission was lesser than that of dashing all hope. And quite honestly, I couldn’t see anything hopeful here.
Shortly thereafter, I was told that she had been accepted at a nursing home in the area. The place was a notorious parking lot for the incapacitated poor. The utilization manager, who directed patient traffic from her chair in the center of the ward, her table fan working full steam to keep her hot flashes at bay, told me that the nursing home wouldn’t accept her without a permanent, surgically-placed feeding tube–a peg.
In the early days of her ICU stay, a temporary feeding tube through her nose had allowed us to provide calories for medical purposes. But nursing homes know what doctors like me often don’t admit: that this isn’t a temporary condition. Something permanent had happened, and the care solutions needed permanent technologies, ones which wouldn’t get pulled out or dislodged in the middle of the night, or require extra care or maintenance.
Despite all of my justifications for not talking to the patient, the image of permanent mechanical feeding for this woman flipped an internal switch. How could I plug her further into this trapped life without offering her some option to refuse it? This act would serve as another nail in the casket, committing this woman to a nightmare worse than any B movie could describe. And unlike many of the patients we “plug in”, this patient was alert, cognitively intact. Prolonging her life for even a minute, let alone months or years, might amount to sheer cruelty. What would she do if given a choice? Might she prefer to pass away naturally? When I put myself in her place, I felt panic. I would have done everything in my remaining power to communicate my wishes. I would have used every possible flick of my eyelids. Every pupillary contraction I could muster. I would have begged people to let me go.
I knew I had to try and talk to her. I willed myself to walk in that room, be honest, and help this woman as best as I could. I pulled up a chair and sat next to her bed, raising the head of the bed so that we were at eye level. I took her limp hand in mine and held it tight. “I have very bad news,” I said, as gently as I could. “You had a very bad stroke, and that is why you are unable to talk or move. We can’t cure this condition you have. I’m afraid that you will always be paralyzed like this.”
I waited for an acknowledgment, but there was nothing. Just those staring eyes. Was she in shock? Angry? Terrified? In Palliative Care, we are trained to wait, to allow pauses in our conversations when we’ve broken bad news. But this was a completely different kind of waiting. Maybe she was begging me to go on. To give her more information. But maybe she was begging me to stop. To leave her alone, to take this impossible news away with me and never come back. I feared that I would never know.
“Can you blink once if you understand that?” I tried.
After about 10 seconds, a slow blink. I wasn’t sure if it was a true acknowledgement, or just a reflex. I went on. “Is that something that you can live with or would you rather pass away?”
What kind of terrible question was that? It sounded so callous, so mean. I plowed on as best I could. “Please blink once if you would want to continue being kept alive in this condition.” Another 10 seconds. Or was it 15? A slow blink. But maybe her eyes were dry? I tried a different tack. “Would you prefer to be allowed to die sooner? To be disconnected from these machines?”
The blinking wasn’t working. I felt panic rise. What if I was seeing what I thought I should see, what I would have wanted, and not this poor woman’s truth? What if she believed God’s will required that she be kept alive at all costs? What if she was too scared to die, and when being forced to choose between these two unspeakable outcomes, would have chosen to live in this purgatory? After 15 more minutes of impossible, disjointed attempts to communicate, I squeezed her hand again and retreated from the room to meet with her family outside in the hall. I simply didn’t know this woman well enough to project what she would want here. Maybe they could help me.
But they couldn’t. We talked and talked, about her, about her religious feelings, about whether she’d ever had a conversation about something like this. No, no, and no. They simply didn’t know. Individually they told me they didn’t feel comfortable “killing her” or “starving her.” Okay, I thought to myself, there is nothing more to do here. I do not have enough information to be confident that we are doing the right thing. Although I knew without a doubt what I would choose for myself or my loved ones, I was not in a position to make this choice for someone I did not know.
The tube was put in, the patient shipped off to a nursing facility. I limped away from that case. This nightmare scenario did make one thing very clear: even though a case like this is one in a million, we should make sure that we’ve done all possible preparation when it comes to this tremendously vulnerable stage of life—the very end.