Before I saw the living dead man, I had been optimistic about the world of respiratory therapy. Academically it sounds great: you’re helping people to breathe, and breathing is a fundamental aspect of living. If one ceases to breathe, or ceases breathing as well as before, very few things have higher priority. We half-joked in school that if you are not breathing, you will not be doing anything else either. And what could be more satisfying than aiding people’s breathing? It is an important and vital job. That attitude colored most of my first day.
Cheerfully I made the rounds, following a real respiratory therapist around and passing out nebulizers to patients who needed close maintenance to keep their lungs functional. I listened to lung sounds and was happy to hear, for the first time, real wheezing in an asthmatic in the ER. I coached patients on breathing exercises designed to expand the lungs and prevent pneumonia. I felt ecstatic at the opportunity to help people, to really make a difference in their lives. On our first round, we passed out more than a dozen breathing treatments, and I studiously made note of each one in my clinical notebook. For a few high moments, I truly felt that I was living the dream. But there was an exception coming. One thing I have learned is that there is always an exception.
The exception, that pesky and bothersome exception, was the living dead man.
The first time I saw a living dead man was at a hospital in Southern Maine. I was following a respiratory therapist on one of the medical floors where chronic patients gradually erode away under time’s ceaseless waves. He was the final patient on our first round of therapy, sequestered away in a corner room at the end of a long hallway. An ominous smell, a mix of tube feeding and plastic and feces, filled the hallway near his room. A battered metal cart stacked with synthetic isolation gowns, gloves, and eye-shielded masks was parked next to the door. Bright orange signs reading CONTACT ISOLATION: NO ENTRY WITHOUT PROTECTION were tacked to the door. From inside the room came the frantic, gurgling sound of a tracheotomy full of slime. It sounded like a monster from my childhood nightmares, breathing hard and waiting to suck me in and devour me. GGHHRR-ghrrr….GGHHRR-ghrrr…
Following the therapist, I donned the protective outfit of gloves, gown, and mask. We knocked loudly and entered the room. The wall of smell hit my virgin nostrils hard and I blinked back tears and shock. An incongruous advertisement for Clorox played loudly on the television and I caught a glimpse of the unfortunate man before me. Contorted, skeletal limbs, coated with peeling and bruised skin, were folded over a large, puffy torso that was topped with a melon-like head. A pair of panicked and pained eyes peered at out us and I was reminded of the look I‘d seen on slaughtered livestock. The patient was breathing heavily, hacking yellow phlegm out from his tracheotomy, bubbles spewing from between his lips.
The therapist, a pleasant and kind middle-aged woman, took a long suction catheter and advanced it into the trachea. A horrible slurping noise and a grimace from the patient followed, and then the plastic tubing attached to the catheter was suddenly full of yellow snot. The patient coughed one more time, my preceptor sucked the last bits of yellow from his trachea, and suddenly things were eerily quiet.
“What’s wrong with him?” I asked her as we set up for the man‘s therapy. We poured a vial of Albuterol into a nebulizer and hooked it into the man’s oxygen collar.
“He had a stroke…family wanted us to do everything, so here we are. He was in the ICU for months before he got the trache.”
“Will he get better?”
“Sometimes, stroke patients get better. This time probably not. It was a big stroke. He can’t do much.”
“What will happen to him?”
“He’ll probably go to a rehab center or a nursing home, but long-term, this is probably how he’ll be. Probably he’ll end up with a bad infection and then come back here and pass away.”
We finished our treatment, and the man stared off into the middle distance, the same look of horror on his face that he’d had when we came in. This was his life, day in and day out; tube feedings and colostomy bags and the endless fountain of mucous from his tracheotomy tube.
This whole scenario bothered me. I could not fathom a life in bed, a life without speaking, a life without moving, a life spent staring into the middle distance listening to Clorox commercials as clinicians tried to slow the inevitable decay of my body. Being alive but with no control and no voice seemed like a veritable hell on earth to me. I tried not to think about him much, but he haunted me and as the day wore on I kept seeing his horrified eyes staring out into space. I pondered his fate and asked myself what kind of people could put a man through that kind of suffering instead of letting him die.
Later that day, we encountered his family, a large group of old Maine Catholics. They seemed to be nice people, but I couldn‘t face them. All I could think was that his family either hated him or had advanced to a state of pure denial. It bothered me, and I couldn’t look at them. It was my first encounter with the dark side of modern medicine, and it was the first time that I ever asked myself: is our help just hurting this man?
Chapter One: Clinical Learning Curve
Before I saw the living dead man, I had been optimistic about the world of respiratory therapy. Academically it sounds great: you’re helping people to breathe, and breathing is a fundamental aspect of living. If one ceases to breathe, or ceases breathing as well as before, very few things have higher priority. We half-joked in school that if you are not breathing, you will not be doing anything else either. And what could be more satisfying than aiding people’s breathing? It is an important and vital job. That attitude colored most of my first day.
Cheerfully I made the rounds, following a real respiratory therapist around and passing out nebulizers to patients who needed close maintenance to keep their lungs functional. I listened to lung sounds and was happy to hear, for the first time, real wheezing in an asthmatic in the ER. I coached patients on breathing exercises designed to expand the lungs and prevent pneumonia. I felt ecstatic at the opportunity to help people, to really make a difference in their lives. On our first round, we passed out more than a dozen breathing treatments, and I studiously made note of each one in my clinical notebook. For a few high moments, I truly felt that I was living the dream. But there was an exception coming. One thing I have learned is that there is always an exception.
The exception, that pesky and bothersome exception, was the living dead man.
The first time I saw a living dead man was at a hospital in Southern Maine. I was following a respiratory therapist on one of the medical floors where chronic patients gradually erode away under time’s ceaseless waves. He was the final patient on our first round of therapy, sequestered away in a corner room at the end of a long hallway. An ominous smell, a mix of tube feeding and plastic and feces, filled the hallway near his room. A battered metal cart stacked with synthetic isolation gowns, gloves, and eye-shielded masks was parked next to the door. Bright orange signs reading CONTACT ISOLATION: NO ENTRY WITHOUT PROTECTION were tacked to the door. From inside the room came the frantic, gurgling sound of a tracheotomy full of slime. It sounded like a monster from my childhood nightmares, breathing hard and waiting to suck me in and devour me. GGHHRR-ghrrr….GGHHRR-ghrrr…
Following the therapist, I donned the protective outfit of gloves, gown, and mask. We knocked loudly and entered the room. The wall of smell hit my virgin nostrils hard and I blinked back tears and shock. An incongruous advertisement for Clorox played loudly on the television and I caught a glimpse of the unfortunate man before me. Contorted, skeletal limbs, coated with peeling and bruised skin, were folded over a large, puffy torso that was topped with a melon-like head. A pair of panicked and pained eyes peered at out us and I was reminded of the look I‘d seen on slaughtered livestock. The patient was breathing heavily, hacking yellow phlegm out from his tracheotomy, bubbles spewing from between his lips.
The therapist, a pleasant and kind middle-aged woman, took a long suction catheter and advanced it into the trachea. A horrible slurping noise and a grimace from the patient followed, and then the plastic tubing attached to the catheter was suddenly full of yellow snot. The patient coughed one more time, my preceptor sucked the last bits of yellow from his trachea, and suddenly things were eerily quiet.
“What’s wrong with him?” I asked her as we set up for the man‘s therapy. We poured a vial of Albuterol into a nebulizer and hooked it into the man’s oxygen collar.
“He had a stroke…family wanted us to do everything, so here we are. He was in the ICU for months before he got the trache.”
“Will he get better?”
“Sometimes, stroke patients get better. This time probably not. It was a big stroke. He can’t do much.”
“What will happen to him?”
“He’ll probably go to a rehab center or a nursing home, but long-term, this is probably how he’ll be. Probably he’ll end up with a bad infection and then come back here and pass away.”
We finished our treatment, and the man stared off into the middle distance, the same look of horror on his face that he’d had when we came in. This was his life, day in and day out; tube feedings and colostomy bags and the endless fountain of mucous from his tracheotomy tube.
This whole scenario bothered me. I could not fathom a life in bed, a life without speaking, a life without moving, a life spent staring into the middle distance listening to Clorox commercials as clinicians tried to slow the inevitable decay of my body. Being alive but with no control and no voice seemed like a veritable hell on earth to me. I tried not to think about him much, but he haunted me and as the day wore on I kept seeing his horrified eyes staring out into space. I pondered his fate and asked myself what kind of people could put a man through that kind of suffering instead of letting him die.
Later that day, we encountered his family, a large group of old Maine Catholics. They seemed to be nice people, but I couldn‘t face them. All I could think was that his family either hated him or had advanced to a state of pure denial. It bothered me, and I couldn’t look at them. It was my first encounter with the dark side of modern medicine, and it was the first time that I ever asked myself: is our help just hurting this man?
Before I saw the living dead man, I had been optimistic about the world of respiratory therapy. Academically it sounds great: you’re helping people to breathe, and breathing is a fundamental aspect of living. If one ceases to breathe, or ceases breathing as well as before, very few things have higher priority. We half-joked in school that if you are not breathing, you will not be doing anything else either. And what could be more satisfying than aiding people’s breathing? It is an important and vital job. That attitude colored most of my first clinical education day.
Cheerfully I made the rounds, following a real respiratory therapist around and passing out nebulizers to patients who needed close maintenance to keep their lungs functional. I listened to lung sounds and was happy to hear, for the first time, real wheezing in an asthmatic in the ER. I coached patients on breathing exercises designed to expand the lungs and prevent pneumonia. I felt ecstatic at the opportunity to help people, to really make a difference in their lives. On our first round, we passed out more than a dozen breathing treatments, and I studiously made note of each one in my clinical notebook. For a few high moments, I truly felt that I was living the dream. But there was an exception coming. One thing I have learned is that there is always an exception.
The exception, that pesky and bothersome exception, was the living dead man.
The first time I saw a living dead man was at a hospital in Southern Maine. I was following a respiratory therapist on one of the medical floors where chronic patients gradually erode away under time’s ceaseless waves. He was the final patient on our first round of therapy, sequestered away in a corner room at the end of a long hallway. An ominous smell, a mix of tube feeding and plastic and feces, filled the hallway near his room. A battered metal cart stacked with synthetic isolation gowns, gloves, and eye-shielded masks was parked next to the door. Bright orange signs reading CONTACT ISOLATION: NO ENTRY WITHOUT PROTECTION were tacked to the door. From inside the room came the frantic, gurgling sound of a tracheotomy full of slime. It sounded like a monster from my childhood nightmares, breathing hard and waiting to suck me in and devour me. GGHHRR-ghrrr….GGHHRR-ghrrr…
Following the therapist, I donned the protective outfit of gloves, gown, and mask. We knocked loudly and entered the room. The wall of smell hit my virgin nostrils hard and I blinked back tears and shock. An incongruous advertisement for Clorox played loudly on the television and I caught a glimpse of the unfortunate man before me. Contorted, skeletal limbs, coated with peeling and bruised skin, were folded over a large, puffy torso that was topped with a melon-like head. A pair of panicked and pained eyes peered at out us and I was reminded of the look I‘d seen on slaughtered livestock. The patient was breathing heavily, hacking yellow phlegm out from his tracheotomy, bubbles spewing from between his lips.
The therapist, a pleasant and kind middle-aged woman, took a long suction catheter and advanced it into the trachea. A horrible slurping noise and a grimace from the patient followed, and then the plastic tubing attached to the catheter was suddenly full of yellow snot. The patient coughed one more time, my preceptor sucked the last bits of yellow from his trachea, and suddenly things were eerily quiet.
“What’s wrong with him?” I asked her as we set up for the man‘s therapy. We poured a vial of Albuterol into a nebulizer and hooked it into the man’s oxygen collar.
“He had a stroke…family wanted us to do everything, so here we are. He was in the ICU for months before he got the trache.”
“Will he get better?”
“Sometimes, stroke patients get better. This time probably not. It was a big stroke. He can’t do much.”
“What will happen to him?”
“He’ll probably go to a rehab center or a nursing home, but long-term, this is probably how he’ll be. Probably he’ll end up with a bad infection and then come back here and pass away.”
We finished our treatment, and the man stared off into the middle distance, the same look of horror on his face that he’d had when we came in. This was his life, day in and day out; tube feedings and colostomy bags and the endless fountain of mucous from his tracheotomy tube.
This whole scenario bothered me. What kind of cruel joke was this? Were we seriously going to prolong this man’s suffering, delay the inevitable? Was I actively participating in the extension of suffering? Our job as respiratory therapists is to help people, not to torture the dying and prolong the misery. I was confused. I was frightened. My head was spinning. I could not fathom a life in bed, a life without speaking, a life without moving, a life spent staring into the middle distance listening to Clorox commercials as clinicians tried to slow the inevitable decay of my body. Being alive but with no control and no voice seemed like a veritable hell on earth to me. I tried not to think about him much, but he haunted me and as the day wore on I kept seeing his horrified eyes staring out into space. I pondered his fate and asked myself what kind of people could put a man through that kind of suffering instead of letting him die.
Later that day, we encountered his family, a large group of old Maine Catholics. They seemed to be nice people, but I couldn‘t face them. All I could think was that his family either hated him or had advanced to a state of pure denial. It bothered me, and I couldn’t look at them. It was my first encounter with the dark side of modern medicine, and it was the first time that I ever asked myself: is our help just hurting this man?
You know, just like I do, that the things we do to people in the name of keeping them alive is heinous. Everytime I take care of one of these “living dead men” I remind myself to go home to reinforce to my wife what I want should that fate ever befall me. She hates it, but at least she knows.
But it’s like the House of God (just finished reading it…), the more we do, the worse they get. Gomers never die…
I think anyone who works in a hospital and has witnessed languishing patients, has often pondered what should be done is a situation like this. I used to put quotes around “we saved someone else today”, as I gave report on another patient was forcibly pulled back from walking towards the light. I’ve worked in acute care and long term acute care. If you want to work in an environment where you have many questions about quality of life, etc., work for an LTAC…
I think it is very difficult for the families of patients who have unfortunate catastrophic illnesses to make decisions they’re not medically qualified to make. That’s where clinicians should be involved to explain the science behind the event, along with those clinicians who can provide the emotional support that results because of the event.
In this case, it is easy to say the family is clueless – because they are. But, whether they are good Catholics or hold some other religious belief, their understanding of the situation at hand needs to be explained to them – on their level. I am reading a book called, “Hospital”, about Maimonides Hospital in New York. The hospital’s history includes treating Orthodox Jews and the author in the book takes the time to tell the readers about how end of life issues are dealt with by those who hold that belief – they don’t believe in removing loved ones from “life support”. She also speaks about her observations about other faiths/cultures as well.
I think if nothing else, we should realize that the “living dead” may, or may not be – we don’t know. Especially in the case of a stroke – the patient may be “locked in” – they may hear… we don’t know – they surely can’t tell us… And, after they get to this point, after the initial “saving”, how do you let them go? Wean them from the vent, continue the tube feeds, hurry up and change their level of care before something else happens… No one wants to make those decisions – again, all of this needs to be explained to the family. And, no, they’re (the family) not all scholars and most won’t get it – thus the challenge.
I enjoyed reading your blog!
Wow. Just… wow.
Just because we can, doesn’t mean we should. I feel so bad for these poor souls everytime I take care of one.
Thank you for your comments and observations about the “living” dead. Like the marathon runner, we find our “wall” that we will either overcome or fail… Please get help with an experienced instructor, friend, colleague… seek someone who can help YOU, because you are at a cross-roads where you will make decisions that impact the rest of your life and career. The subject of how to educate the family into making good life decisions is so far beyond our abilities as humans. We just do not make good life decisions. The best we can hope for in reality is a compromise on decisions and that sometimes is going to cause suffering. Do your best to help the cause, support the people, the clinicians, the family doctors, the pulmonologists who are in the position to help guide and counsel the family and pray for the best. I am a RT student who knew I was going to be working in a world of distorted healthcare values before I started, so I have been working a part time job as Unit Secretary/nurse assistant in Surgical ICU and Cardiac Care Units in order to become inured (but hopefully not unsympathetic) to tough medical conditions and situations. I knew I needed to do this during clinical at nursing homes when I saw patients who would never live their lives in the unsupported real world outside the home, who would never have normal family relations again before they expired in this artificial world… and they were all cognizant of their situations. All we can do is our part to alleviate human suffering helping one person at a time to the best of our ability without becoming too cynical and distorted in our own views of life. Sometimes we need to turn to humor, sometimes to prayer, sometimes to love, but never to cynicism without becoming distorted ourselves. Good luck and I hope we meet sometime.
Sometimes our job is just SO hard. I often wonder the same things.
I see that Wanderer beat me to the punch with the House of God similarity. In the book, Gomers are nearly immortal, clinging to life long after their multitude of chronic conditions should have prevailed, while only the young are really capable of dying.
Although I haven’t had this kind of exposure, and although I tend to agree with your stance that people should be allowed to die without extended suffering should this be imminent, I just want to throw this thought out there:
how do you know that this man’s look of horror and panic was a response to his life as a “living dead man”, rather than the fear of facing death and the horror that the doctors might take him off life support? Sometimes people are not ready to die, and while this isn’t usually their decision to make, I am still not sure whether it is an act of kindness to force them into it, ready or not..
KB, keep your head up. Every now and then we really help people. Most of the time we prolong miserable existences in the name of medicine. Hopefully the memories of those we help will be greater than those we did not.
I often think it’s not about the family being clueless or good or bad, simply terrified to be “the bad guy”, the one who says “let him/her die”. That’s a HUGE hard decision to live with. So many times I can’t count anymore, I’ve had families of the could have been living dead ask over and over “Are we doing the right thing to let them go? Do you think we’re bad sons/daughters/spouses?” And I always reply “I think you’re the bravest person in this room.”
It’s a hard decision but like all of you, I’ve seen the horror and I now believe that if people could know what we know and see what we see and imagine themselves in that bed, those what to do questions would become much easier for them.
Maybe he just was hypERthyroid. Seriously though, been through this with family members, and plenty of pets too, and know now not to take life saving measures too far, now,I hope. But most folks won’t get it until they’ve been through one or two of these deaths in their own world. They’ve unfortunately got to learn it the hard way.
Hey KB:
Dig your posters! I’m Nick.
I’ve had a trach and 24/7 ventilator for 14 years. I went to college on a ventilator, got published on a ventilator, had my first kiss on a ventilator. I have always relied on RTs a lot, and was featured here in the AARC newsletter.
Because I’m on life support, some have told me my life is not worth living. They’re wrong.
I respect your legitimate concerns about “just delaying the inevitable” and prolonging suffering, and obviously the calculation is different with a brain dead patient, but life on life support should never be ruled out as horrible, as a blanket statement across the board. Please never go to the extreme of thinking that just because someone will never be like they once were, their life is not worth living (e.g. The Onion | Gymnast Shawn Johnson Put To Sleep After Breaking Leg).
See, this is why I work in hospice. And I consider myself a well informed pro-life Catholic.
This family just suffers from ignorance. On TV, it’s a full court press to save the patient! We can’t give up hope! That’s where the heroism is in health care, right? In reality we’re not extending life, we’re prolonging dying.
We live in a culture that emphasizes quantity over quality, every time.