Bringing sleep lessons from personal life to rehabilitation- An OT’s perspective

“I haven’t had a single patient tell me that they didn’t have sleep issues, except when they are on sleeping pills”

– Maria, an Occupational Therapist.

“Sleep fascinates me.” That is what Maria said to me the first time we met. We connected due to her eager enthusiasm to discuss sleep. “The more I learned, the more I understood the magnificent things that the brain does when we are sleeping”

Maria is an occupational therapist at the Jewish Rehabilitation Hospital in Laval. In a nutshell, she is a part of the interdisciplinary rehabilitation care team that helps patients maximize their functional independence and recover after an injury, accident, or neurological condition. In the past, she has worked with patients who suffered from traumatic brain injury (TBI) and now for 2 years, she is treating chronic pain patients.

Beyond her fascination with sleep, Maria’s pragmatic mindset drives her to draw from her experiences managing her sleep issues to support her patients better. “Almost all my patients have sleep issues,” she noted, “and it affects their recovery.”

A Birthday Gift

With all that intense curiosity and spark in her eyes, while discussing sleep, I couldn’t help but ask where it all began. “It was June 2020, and I was alone in my room for two weeks with a TV, knitting kit, and books,” she shared. “I had COVID—that was my 50th birthday gift! I started questioning everything, and I accidentally fell into the rabbit hole of sleep’s mysteries.” She devoured books and podcasts about dreams, the healing powers of sleep, the circadian clock, light exposure and breathing to name a few.

On returning to work after these intense weeks of isolation, Maria frustratingly started experiencing brain fog and struggled to retain information. “I would ask my patients some questions and I was no longer documenting them. At the end of the day, I couldn’t form coherent sentences,” she recalled. In addition, she was going through the pre-menopause phase. “Falling asleep, staying asleep and feeling rested in the morning was a problem for me”, she added.

This issue was exacerbated by the fact that Maria was trading sleep with Netflix, like many of us. “It was a stressful time. I wanted to do something for myself. So, I would watch Netflix or knit from 10 pm until very late. I learnt many things, but I was not sleeping”, she admitted.

Recognizing the problem and being conscious of her family’s history of dementia, Maria decided to turn her fascination with sleep into actionable changes in her own life. “I started exercising, changed my diet, “fixed” my sleep cycle and eventually my fogginess had dissipated. I started doing Yoga Nidra to fall asleep, which I heard from the Huberman podcast. I loved it and it became a chore every night. I would do it in the middle of the night if I woke up. Apart from that, I maintained sleep hygiene, got a lamp for light exposure in the morning and bought a ring which tracks my sleep.”

Self-Education to Patient-Education

Before self-educating, just as Maria had minimized the importance of sleep in her personal life, she was unaware of its profound impact on the recovery of her hospitalized patients needing acute care.

She recalled, “I was treating geriatric and TBI patients, teaching them to carry out activities of daily living, getting dressed, getting out of bed. I never really talked about breathing, light exposure or sleep. All of that was unknown to me. In fact, the nurses came at FIVE a.m. and woke the patients up to take blood samples. I now notice that they don’t have enough exposure to sunlight. On top of that, winters make it difficult to bring patients outside- it’s cold.”

Unfortunately, sleep disruptions in hospitals are a systemic issue and not one person is to blame. She added, “With all that I know now, I can’t help but think about what I could have done differently”.

Maria’s concerns are germane. Sleep disturbances are prevalent among individuals undergoing rehabilitation care. They can precede or emerge because of their condition, which in turn can exacerbate the condition or slow the recovery.

This is important because sleep impacts various rehabilitation-related outcomes such as motor learning and relearning, remembering the learned skills and information, managing pain, healing and recovery, problem-solving and implementation of adaptation strategies.
Although Maria wasn’t taught this in her training to become an occupational therapist, she recognizes this, and she voices her concerns while giving examples of her patients. She now works with patients suffering from chronic pain. A significant part of her job involves educating patients on lifestyle factors like sleep, diet, postural hygiene and breathing techniques to help them recover. She said, “I had already [personally] been there [done that].” Thus, this was right up her alley.

Noticing The Red Flags

Given that sleep is integral to rehabilitation outcomes, the lack of consensus and guidelines on this matter is alarming. (Although see for TBI.). Occupational therapists and physiotherapists face challenges and they must rely on their knowledge or hospital /department guidelines, if any and apply make-shift strategies.

“I haven’t had a single patient tell me that they didn’t have sleep issues, except when they are on sleeping pills”, said Maria. She speculates on patients’ sleep issues through the administration of sleep questionnaires as a part of initial evaluation and recognizes red flags- the risk factors – which might allude to underlying sleep problems. “I ask them if they snore if they wake up many times in the night. I check if they are overweight, or they have blood sugar issues. Sometimes they say- I need a sugary snack before sleeping otherwise I can’t sleep”, she explained, “I suspect sleep apnea.”

She described that some of her patients present with a perfect “cocktail of these red flags”. These patients suffer chronic pain or fibromyalgia or injuries; they work night shifts or are working in stressful jobs in the healthcare system and have mental health issues. They show a compounding effect.

Everything Is Right, Then What Is Wrong?

“When I see these red flags, I wonder what this patient really needs the most?”, she wondered, “They have chronic inflammation due to injury and their body hasn’t healed the way you expect it to heal because of sleep issues. I’m wondering if their uncorrected sleep apnea or other sleep disorder is partly contributing to this inflammatory process?”

One of Maria’s patients suffering from chronic pain was doing everything right- eating well, “sleeping”, watching her lifestyle, applying correct tools- but her pain didn’t alleviate. “She was on sleeping pills for over 7 years. This patient raised a question for me. I am wondering if the sleeping pills just sedated her brain, and that she hasn’t benefited from the beautiful reparative sleep for years.”

While no causal inferences can be drawn about this patient, it is well known that benzodiazepines and Z-hypnotics used as sleep medications, paradoxically, rob us of the deeper stages of sleep, don’t treat the root problem and may cause numerous side effects.

An Upside-down Process: Reaching Out To Family Doctors

With her proactive self-education and keen observations, Maria does an outstanding job in identifying sleep problems in her patients, even though sleep is not her primary focus of treatment. However, she cannot diagnose a sleep disorder herself- this needs a sleep specialist. This needs a patient to be referred to a sleep specialist by their family doctor. This needs a family doctor to first recognize sleep issues; which requires them to ask sleep-related questions to their patients even if the primary issue that patients seek help for is chronic pain or skin diseases. This needs them to be educated on sleep as a part of their curriculum or continuing health education program. This is a multivariate issue.

I was stunned by the examples Maria shared of her patients. Maria recalled about her patient with chronic regional pain syndrome which she described, “It’s like the inflammatory immune response after an injury never turns off. It was a vicious cycle of pain, lack of sleep and lack of healing. She was very deep in pain.” On observing this patient’s red flags, which included bedwetting at night, and visual hallucinations, Maria suspected sleep apnea. She took the extra step of sending a letter to the patient’s family doctor requesting to refer her to a sleep clinic. Maria said, “Her doctor agreed. She was diagnosed with moderate to severe sleep apnea and she got the CPAP machine.”

After Maria and the rehabilitation care team convinced the patient to use the CPAP machine, she said, “My patient eventually, slowly and miraculously became another woman! She started to feel the difference in her energy levels within a month and within 2-3 months you could see the difference in her recovery. I saw her developing problem-solving skills, adapting their way of doing things and thinking of how she can integrate her non-dominant hand in daily activities. She came out of the fog.”

Given the severity of the sleep apnea in this patient, I asked Maria if the patient’s family doctor couldn’t recognize this themselves. She nodded in despair and a huge sigh, “I am surprised too”, she added. “I don’t know how many times we have sent a request to the patient’s family doctors to refer them to the sleep clinic to start managing the sleep issues or to at least exclude the possibility of sleep issue being a potential catalyst to my patient’s pain.”

For all her patients their family doctors agreed with her request, except for one case. “For one patient, we stopped treating him because we felt we were putting his life in danger by making him drive here. We observed that he was falling asleep during our group educational program. He was minimizing how much he was falling asleep.” Maria continued, “Once he fell asleep in the middle of the sentence in front of the psychologist in our team. The psychologist warned us that we had an urgent problem. We were scared to even have him leave and drive back.”

This was a grave issue and Maria’s team reacted immediately. They sent an urgent request to his family doctor asking for a referral to a sleep specialist. To their shock, his family doctor refused to make a referral. Maria added, “So, I called the doctor to ask the reason [for the refusal].” The doctor responded, “You didn’t attach the results of the Epworth Sleepiness Scale in the letter. Anything above 15 on that questionnaire will justify referring him to the sleep clinic.” Maria furiously continued, “Until that moment I didn’t know what the Epworth sleepiness scale was.” She searched the questionnaire, administered it to her patient and finally he was referred to a sleep specialist.

This case exemplified a backward process. It seemed as though the responsibility fell on Maria to find out about the questionnaire and address the sleep issue that wasn’t even the primary reason she was treating the patient in the first place.
Generally, the patient’s rehabilitation care continues simultaneously as their sleep issues are getting addressed. Maria said, “We have limited time. So, we address the sleep issue right off the bat, send the letter to the doctor, and continue their rehabilitation. They are still suffering from a sleep disorder while we treat them even if it may impact their recovery.”

An Occupational Therapist’s Frustration: Crack in the System

These experiences highlight the gaps in the system and people like Maria who recognize them are frustrated. “I think part of the frustration in our team stems from the fact that we are almost the last line of care. We get these patients where the symptoms are chronic. Has no one in the pipeline of care thought of considering sleep issues as an impacting factor in a patient’s recovery? Doctors should address sleep in the chronic pain profile of the patient.”

Although it is tough to overcome these challenges entirely, Maria and her team take proactive steps. They have started sending requests for referrals to the doctors, administering some sleep questionnaires, conducting group and individualized sleep education for patients and being sensitive to red flags.

“I can’t cover my eyes”, said Maria alluding to a need for cross-disciplinary implementation of knowledge on sleep. She explained that she cannot focus on recovery without considering sleep. “I feel that the patients that we get have fallen through the cracks of the system. They come here and they have been suffering for a very long time.”

But she also feels hopeful that this will change.

Call For Change

Drawing from her experiences and knowledge, Maria suggested the inclusion of sleep education in occupational therapists’ curriculums. She passionately said, “We deal with patients that had brain and body injury and their body is hurting. In such situations, our body goes into a repair and healing mode. Sleep is also a part of auto repair. That’s the way I see it. So how come we are not addressing it? Why are we not taught it? Regardless of the patient profile that OTs will work within their career, they should learn in schools what I had to learn by myself. Had I known all this, I would have done things differently when I was working in acute care with TBI.”

Lastly, Maria iterated that sleep should be addressed at the beginning of the patient’s line of care. “The first line of defence system is a family doctor. They should be trained and sensitized to this issue. Currently, they are not addressing this. I don’t want to generalize. I had patients with very good family doctors, and I know that they have limited time with their patients. But sleep is equally important and should be a part of their routine evaluation.”

In addition, establishing clear guidelines to address and manage sleep in rehabilitation care will be pivotal. This can include standardizing the use of sleep questionnaires, implementing best practices to improve sleep conditions in hospitals, and evaluating the impact of sleep interventions on patients’ recovery.
Maria’s story of devouring knowledge for her personal sleep struggles and transferring her passion for her patients’ recovery is inspiring. She hopes that her story raises questions and calls for much-needed change. She concluded, “I really hope this is for my patients.”