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3 Things I Wish the Medical Staff Understood During My Hospitalization

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Just over 10 years ago, I developed Bickerstaff brainstem encephalitis (BBE), and was in a coma for six weeks and hospitalized for 18 months. The illness resulted in an acquired brain injury (ABI) which caused a multitude of physical, mental and emotional issues that confused me, puzzled doctors and frustrated nurses and care aides. As a result, I experienced countless moments of fear, isolation, loneliness, confusion, depression and anxiety. I believe many of these situations could have been alleviated if hospital staff were better prepared. These are the three main areas where health workers’ lack of knowledge and understanding impacted my care:

1. ICU delirium and post-intensive care syndrome (PICS).

Delirium is an abrupt change in the brain that causes mental confusion and emotional disruption. It is caused by many factors, and can result in hallucinations, emotional disturbances, sleep issues, cognitive impairments and more. Up to 80% of ICU patients experience delirium (depending on the severity of illness). There are often long-term consequences, such as depression, anxiety, post-traumatic stress disorder (PTSD) and even physical impairments.

PICS is a group of health problems that often are a result of ICU stays. These health issues fall into three main categories: physical impairment, cognitive impairment and psychiatric impairment. They may begin in the ICU and can persist for years after having left the ICU. Patients who have had sepsis, acute respiratory distress syndrome (ARDS), multi-organ failure or prolonged mechanical ventilation can be at higher risk for developing PICS due to the intense care of these medical conditions.

I have almost no memories of the first month after emerging from the coma. The next few months are a confused, disjointed blur of fractured images and visceral emotions. Whenever I allow myself to reflect back on that time, I am flooded with fear, confusion, disorientation and vulnerability. I felt anchorless and disembodied, like my atoms had separated into a formless mist, and my self-awareness was intact, but untethered to physical reality. I experienced hallucinations, paranoia and a terribly skewed perception of time, sometimes not even able to tell night from day.

Doctors often stood over my bed, read my chart and discussed my status with their colleagues without speaking to me. Nurses came and fiddled with equipment, tubes and wires. They emptied containers, injected fluids and replaced bags and dressings. My virtually lifeless body was poked, prodded, tubed, turned, adjusted, scanned, stripped, bathed, diapered and clothed. All of this was done by nurses, care aides and technicians who barely looked at my face, and almost never spoke to me. They were far more concerned with my physical health than my mental state, and I think many of them assumed I was unaware or unable to comprehend.

I believe the mental health issues I experienced from delirium and PICS could have been alleviated if medical staff were better educated about it. Simple acts like greeting me when they enter my room, telling me the time and date and sharing what the plans of the day are may have helped clarify time and space. Talking to me and explaining what’s happening during scans and procedures may have eased fear and anxiety. Recognizing there is a person who may be completely aware inside that nonverbal body, and trying to find ways to help me communicate, might have reassured and tethered me to reality.

2. Emotional lability (pseudobulbar affect).

Injury to the brain can often result in emotional lability, which is a neurological condition that causes uncontrollable outbursts, often at inappropriate times. The reaction is often far more intense than the situation warrants, or is incongruent with the circumstances (laughing at sad news).

I experienced emotional lability for years after my brain injury. As my brain and nervous system repaired itself over the years, I slowly stabilized, but the first year while I hospitalized was the worst. I constantly felt emotionally twisted and “out of control.” When I wasn’t bawling or raging, I was flat and emotionless. I yelled and cursed at nurses, threw tantrums with therapists and became demanding and obstinate with loved ones. I burst into tears when my mother told me it was a beautiful spring day outside, and laughed when the doctors told me they would probably have to amputate my feet. My reactions surprised and shamed me. I lay awake at night, feeling guilty about an outburst, only to repeat my behavior again the next day.

The nurses became frustrated, physiotherapists stopped working with me and the care aides assigned to my nightly “mental health watch” stopped interacting with me. I felt like a pariah, a bad patient, a troublemaker. And the worst part was I had very little control over it. It was like riding a wild horse bareback over an open plain. A few nurses began to take it personally, and they would curse at me, say cruel things or flat-out ignore me. This only exacerbated my emotional responses, and left me feeling determined to fight back.

I know my behavior was disruptive and added a great deal of stress to the nurses’ jobs. I certainly don’t believe anyone should have to tolerate abuse, regardless of the circumstances or how ill the patient is. However, I believe if medical staff were better educated and supported by the hospital, they may be less likely to take poor behavior personally, be more patient with emotional outbursts and better equipped to manage the stress and resentment that threatens to build.

3. Mental health versus physical health.

These are two separate areas of health, but from my experience, it’s surprising how often medical professionals get them mixed up, especially if you have a pre-existing mental illness. Because I had a brain injury and a history of depression and addiction, many doctors assumed some of my physical issues were mental health issues. These assumptions not only delayed or complicated treatment for the physical distress, they exacerbated the mental turmoil I was experiencing.

After about four months with a tracheostomy, the respirologist decided it was time for it to come out. To prepare me for breathing through my mouth and nose again, he wanted to plug my trach. The plug was a small plastic piece that screwed into my trach hole, preventing air from flowing in and out. Each time it was put in, I could exhale but not inhale. I might get a few inhales in the beginning, and it would seem like everything was fine. Then, suddenly, I was emptying my lungs and not filling them again. It’s like a valve would open so I could exhale, then slam closed when I tried to inhale. I was repeatedly instructed to “relax” and “not think about it,” and “if you let it, your body knows what to do.” I tried, I really did, but to no avail.

At first, everyone was supportive and encouraging, returning to try again and again. After a while, however, they became exasperated, even angry with me, claiming it was “all in my head” and I should just “stop fighting it.”

They even went so far as to have my physiotherapists insert the plug secretly during a session to “trick” my mind into accepting it. A few minutes after the session, as I was sitting in my wheelchair across from my husband, I began to suffocate. As soon as my husband realized what was happening, he reached forward and pulled the plug out. I took a deep breath and promptly burst into tears. This reaction was a not only a knee-jerk response to the sudden fear I had just experienced, it was also a reaction to the sense of betrayal I felt. The trust I had placed in the therapists while I was so vulnerable was forever broken, and my future sessions were tainted with suspicion and nervousness.

Still, that wasn’t enough to convince the respirologists I was telling the truth, that it was a physical barrier, not a mental one. It was decided the trach would be removed anyway, that once the trach was out, my body would respond normally. I lay on the hard table, squinting against the bright light overhead. The respirologist’s masked face appeared above me. I felt him fiddling around at the base of my throat, releasing the strap around my neck. A bit of a tug, and a sliding sensation, then

… inhale … exhale … inhale … exhale … nothing … exhale … nothing …

I clutched at my throat. The doctor pulled my hand away from the wound, and said, “Breathe in, Jennifer.”

“I can’t!” I tried to scream. I began to panic when I saw his eyes widen in alarm, and he fumbled for the old trach he had just removed (there was not a new one prepared since he didn’t think it would be needed). “Hang on,” he said in a slightly shaky voice. Cold hands on my neck, a sharp pain, then … inhale!

A few days later, after a number of tests and scans, the respirologist informed us my vocal chords were still partially paralyzed, which was causing the breathing issues. No apology for the distress he caused me, or the stress that was put on my family. In fact, he then matter-of-factly predicted I would have a tracheostomy and feeding tube for the remainder of my life, and walked out to begin his weekend. Six months later, the trach was removed with no issues, physical or mental.

This is only one of the many times a physical issue was mistaken for a mental or behavioral one during my hospital stay. All too often medical professionals do not fully understand or do not take the time to investigate a patient’s symptoms. If the standard tests and scans do not reveal answers, it is assumed there is no physical ailment, and therefore the issue must be mental. If you have a history of mental health issues, this only reinforces those assumptions, and makes it even more difficult for a patient or their loved ones to challenge them.

Of the many dozens of doctors, nurses, care aides and technicians encountered during my hospitalization and recovery, about 10% were fantastic: compassionate, informed, patient, diligent. Twenty percent were good: knowledgeable, patient and forthcoming. Sixty percent were tolerable: professional, trained, but indifferent. Ten percent were bad: negligent and unkind. And of that last 10%, five were terrible: cruel and abusive. Only five. Yet, they are the people I remember most. Their abuse is the greatest contributor to the PTSD and anxiety I still experience today.

It goes to show how much of an impact patient’s experiences with hospital staff can have on their mental health for years to come, and sometimes the rest of their lives.

This responsibility does not rest on the shoulders of health care workers alone. To remain current and skilled, they should be continually trying to educate themselves and learning new skills. However, there needs to be a higher level of training in areas of mental health, as well as doctor-patient interaction. Hospital staff are often overworked, under-rested, and time-restricted. This often impacts their own mental health and their interactions with patients. To provide patients with thorough and compassionate care, hospitals need to provide health workers with the resources necessary to maintain their physical and mental health, increase the time spent communicating with patients and investigating issues and improving their knowledge and training.

After all, isn’t the goal to release the patient from the hospital in stable physical and  mental health?

Getty image by KatarzynaBialasiewicz

Originally published: April 13, 2021
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