Category Archives: The Patient

the n of 1

We’d like to think that medicine is entirely evidence-based, but it’s not. Some of what we do has a great amount of evidence behind it, but sometimes the evidence is a little more shaky. Sometimes there’s practically no evidence. As a paramedic put it to me in an ACLS class one day, aside from this short list of drugs, as far as the evidence goes, we could put mayonnaise in that IV and there’d be a similar amount of research to support it.

I mean, we try our best to operate under what we think to be the best. We read consensus statements from working groups, we go by clinical practice guidelines published by a committee of experts, and when we aren’t sure, we go by conjecture that we base on previous clinical experience and whatever tangentially associated evidence we happen to have packed away in our brains. We usually get pretty close, but the truth is that we could get a lot better. A lot of the time, we basically run on nothing.

In truth, we don’t really run on “nothing” — clinical experience isn’t irrelevant, and recommendations from those with more experience than us, while not exactly evidence, isn’t exactly nothing. But there’s lots of situations, especially with the sort-of new-frontier type medicine, where the answer to the question of what the best thing to do is honestly that we don’t know.

So imagine my joy when I find a document on a subject that I know has gotten little research. Somebody (in this case the Canadian Thoracic Society) has compiled all of the best available information into one document and made recommendations based on it. I skipped off to the printer (sorry, trees) and pulled out my highlighter and began swiping away at passages I found most relevant. I got two swipes and three paragraphs into the actual recommendations before I found this gem:

“Unfortunately, each of these techniques suffers from the lack of well-designed prospective trials. As such, recommendations were informed by observational studies and professional consensus.”

Professional consensus and observational studies. So clinical experience (times a lot of clinicians) plus tangentially related evidence (with a small sample size and no controlled conditions) are literally the best evidence we have. Like I said, it’s not exactly nothing, but when you consider the way things tend to fall apart under close scrutiny in this field, it’s about as close to nothing as you can get while still having a half-assed idea what you’re doing.

In school they teach us to operate on this version of ‘nothing’. They teach us models and give us context and try and assist us in developing the skills necessary to work outside the textbook. Very few patients are cookie-cutter. We operate like that a little bit when we’re brand new, but as we gain experience we learn things that are unteachable. We learn how much wiggle room we really have — that it’s not necessarily the end of the world if we try something and it doesn’t work. We learn that the limits we were given are margins of safety, and that there’s a lot of space between the margins.

Enter the patient. I’m lucky, I say — so many of my patients are heavily sedated and won’t remember what I did to them — I have a sort of list of things I can try in order to achieve the result that I want. It’s a common refrain in health care that patients don’t read textbooks, and it’s true. It’s exactly because no two patients are exactly alike that no two treatments are exactly alike. It’s the nature of what I do that I intervene and look for a particular patient response; when I don’t get the response I want, I change my intervention. In this way each patient is its own isolated experimental model: a kind of so-called n-of-1 trial.

I think if most people knew how much of my job (especially with regards to ventilating people) is “well, let’s try it and see what happens,” they’d be a little concerned. The truth is that that’s the essence of a lot of medicine. The beauty of ventilating someone with a piece of equipment that retails for more than a small condominium is that I get the benefit of immediate information about how my experiment is working. I don’t have to wait for days for antibiotics to work or steroids to kick in. I don’t even have to wait the minutes it can take for sedation to kick in. I will usually know in under 5 minutes if what I want to do is going to work or not, and because things respond so fast, unless I do something exceedingly stupid it’s actually very difficult for me to harm somebody with an experiment of this kind.

Sometimes I get another kind of immediate data: sometimes my patients are awake and talking. The home ventilator stuff I linked up there is so interesting precisely because of that. 99% of the time when I ventilate a patient, they’re out cold and I’m left to do the guesswork based on some animations and a few fluctuating numbers on an LCD screen. When the patient’s awake, they can tell me what they want and how they feel, and if they’re articulate about it and it’s a problem I can solve, in a way this gives me far more fine-grained control over what I end up doing.

He asks me questions, and the answer I have is an honest one: we don’t know, there’s not a lot of research to support this, we don’t have a lot of good models for what we’re doing, it depends on how you respond. It sounds terrifying to somebody who wants the patriarchal model of medicine to hand down a pronouncement from on high about what their therapy will entail. Sometimes we do that, but we try not to. Care plans shouldn’t be about what I think is best for you. I don’t live in your body for 24 hours a day and once you walk out those doors the life you live is your own. If I’m going to come up with something that you’re going to be able to live with day in and day out, it’s far better if we can come up with something together.

It’s easy 99% of the time with my heavily sedated patients. The tube comes out, they come to, (sometimes not in that order,) and what I’ve done is something that was profoundly uncomfortable and yet saved their life. They don’t have to live with the therapy on a day-in-day-out basis — it was a short term thing and once over, it can be forgotten.

With someone who’s vented at home, it’s an entirely different story. Their life is my therapy and without it their life would be shortened considerably. They can’t ignore what I’m doing if it’s uncomfortable and they can’t forget about it because it’s ever present. I need his feedback to do my job properly: the equipment I use in the home is 1/10th the sophistication of the equipment I use in the ICU. I lose my raw data and get subjective information and I have to glean a course of action from that.

The benefit to this is his subjective response is just as quick oftentimes. He knows his body and I can trust that. He gives me far better data than I can get off of an LCD screen and it allows me to individualize his vent settings in a way that I would never dream of doing with an acutely ill patient. Admittedly it helps that most chronic ventilator patients have healthy lungs, and I’m using settings that are far gentler than anything I’d use on someone really sick, but an experiment is an experiment and it can still go awry.

It depends heavily on the patient too. Some people become very uncomfortable if they think you don’t know. Some people are anxious and when you say “we’ll have to try it and see how it goes” they hear you say that you’re not confident in what you’re doing. (Those are times you have to be part salesman.) But most people actually respond really well to an authentic voice, when you tell them we just don’t know and in a lot of ways we have no way of knowing. I tried hard to be honest without being wishy-washy, and I think they appreciated my lack of fatalism and my willingness to be flexible.

Even inasmuch as the n of 1 is a terrible way to conduct scientific research, it’s a great way to conduct patient care. We are all individuals and what works for one of us will likely not work for the next, and applying cookie-cutter approaches doesn’t always work. At some point a really good clinician will be willing to go beyond the textbook, to look at the data they have, to try new things and to see how they work out. The ability to think critically in this way is what separates out those who really know what they’re doing from those who use the paint-by-numbers or recipe-book method of healthcare, and not just for their critical thinking skills. Some of the most valuable things to come out of such an experiment is the experience of having done it in the first place, of learning those things that are unteachable. We shouldn’t fear experimentation. It’s how we become truly great at what we do.

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the man and the machine

Gear comes up so often as an RT that a day where I don’t do at least some troubleshooting is a boring day indeed. Where most of the other equipment other team members deal with are either ways of gathering patient data (lab analyzers, patient monitors) or ways of giving drugs to the patient (IV pumps), there are relatively few situations where the patient is directly interfacing with the machine in question. It is, after all, somewhat frowned upon for patients to adjust their monitor alarms or change their IV rate.

For many RTs, though, it’s a daily thing. I can think of two examples in particular, and they’re polar opposites: the spirometer, and the ventilator.

Spirometry is a difficult test to do sometimes, as it’s almost 100% effort dependent on the part of the patient. This is in contrast with blood analysis by the lab, where the major difficulty regarding the patient is whether or not you can get blood out of the person. (Sometimes it takes the lab tech who can get blood from a stone. Sometimes it takes four strong staff and five point restraints.) The most accurate results will only happen when a patient can understand my instructions, will cooperate and follow my directions, and when they try as hard as they possibly can.

They emphasize to us in school how important it is for us to coach the patient enthusiastically, since a major portion of getting the best effort out of someone is coaching them to try their hardest. It’s not uncommon for me to look at a patient’s results on the screen or watch a patient blow and go, “you can do better than that.”

Then there’s the interface itself: I’m trying to make a person do a very specific thing to a machine, and if I can’t make that person do what I need them to do, the test is nearly useless. This is a classic example of troubleshooting the patient. I made sure at the beginning of the testing day that my machine is working correctly, so unless something catastrophically fails, the problem is almost universally one with the patient. It’s my job to look at the output the machine displays, and try and explain to the patient I’m testing what I need them to do differently in order to get the output I want. This includes noticing things like air escaping the system at the mouthpiece (and therefore not being measured,) a lack of effort on the part of the patient (meaning the results appear as if the patient has terrible lung funtion to the untrained eye,) or some things the patient has no control over, like whether their dentures are loose, whether that stroke they had five years ago means they can’t make a mouth seal at the mouthpiece, whether they can’t understand what I’m saying but are smiling and nodding anyway, or whether they’re just not going to put the effort in and I’m wasting my time trying to teach a pig to sing.

I can’t stare only at the machine and ignore the patient: the forced exhalation maneuver can cause a transient decrease in blood pressure and a transient slowing of the heart rate, especially towards the end of exhalation, where the patient is forcing against airways that are empty of air and for the most part, closed. In this way it resembles a valsalva maneuver and I need to pay attention to my patient, because if they faint and fall off the chair and bounce their skull off the concrete floor, well, I have a bigger problem than poor test results. If I don’t notice that air is leaking out the side of the patient’s mouth, I’m gonna have a really hard time figuring out why I can’t get decent results. At the same time, I can’t only stare at the patient and ignore the machine. The whole trick to the success of the test is ensuring that the patient is interfacing properly with the machine. Ignoring the machine is to ignore half of the system.

The other major example I have, the ventilator, is somewhat the opposite sort of system. In this case, the patient is often, but not always, passive (rather than with the spirometer, where the machine is passive.) With the ventilator, I’m trying to make the machine do this very specific thing, and if I can’t get the machine to do what I need it to do, then I’ve got some serious problems. The confounding extra factor, for bonus fun, is that sometimes the patient isn’t passive. Sometimes, I’ve got this machine that’s supposed to be breathing for a patient that’s trying to breathe, and a major limitation to this is that they don’t share a brain (though they’re working on that.) Sometimes the patient’s trying to breathe and the machine is trying to breathe and they end up fighting each other, or what some people call “the patient fighting the ventilator.” The term we prefer to use is ‘patient-ventilator dyssynchrony’ or, more colloquially, “hypo-sedation-emia.”

In an ideal world, the patient would initiate a breath and the ventilator would detect this and deliver a breath in synchrony with the patient’s efforts. This is called ‘triggering’ the breath. Then, when the patient is done inhaling, the ventilator can also detect this and, depending on the mode of ventilation, can stop delivering the breath near the same time the patient stops inhaling. This is called ‘cycling’ the breath.

Being as, from a gas flow physics standpoint, the sensors that make these detections are a considerable distance from the patient, sometimes the ventilator isn’t able to detect what the patient wants the ventilator to do. Accordingly, the ventilator is more likely to have a harder time the sicker you are and the worse your lungs are. The ventilator is, after all, a machine, and one of the major downfalls of machines is they don’t think, they only do what we program them to do. Sometimes we can program them with complex algorithms designed to eliminate some of the thinking, but that does not obviate the need to think.

This is where I come in. I observe both the machine and the patient and try to tweak what variables I can tweak in order to get the machine and the patient to agree with each other. I try and see what the patient is trying to do and try and manipulate the variables I have to try and make the vent do what the patient is trying to get it to do. It’s a magical sort of alchemy, and sometimes I can’t make it work. Most of the time, though, I can manage to find the sweet spot between the totally passive patient who “rides” the ventilator and the dyspneic, agitated, desaturating, magical self-extubating patient.

The opposite is also true: sometimes the patient is so sick and so short of breath that they consume so much oxygen trying to breathe (and doing so only ineffectively) that they’re better off anaesthetized so I can take over and make the patient’s lungs do what want them to do so they get some actual gas exchange going and they can get better.

The trend with new ventilator modes is to try and make it so the machine can adjust itself continually according to what the patient appears to ‘want’ according to a software algorithm. This seems like a good idea in theory, and it can work pretty good for some patients, but us RTs tend to hate these newfangled modes for one reason and one reason only: we can’t tweak them. “I can’t make the stupid thing do what want it to do” is what we think, trying to find that sweet spot. I can see what the patient is trying to get the vent to do and the software algorithm can’t.

It’s alchemy, it’s guesswork, it’s “let’s try this and see how that works”, it’s tweaking and a process of elimination. Half the time the process is a series of judgement calls and failed experiments until something works.

I’m the respiratory therapist, and when I troubleshoot a system, it’s got both a machine and a person in it, and I have to troubleshoot them both at the same time. It leads to a unique set of skills and challenges, and I don’t even think these systems are unique to my profession. I think these systems are visible in many disciplines where people interact with machines. I think most of us are just not used to seeing the person as a part of the system.

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when the cure is worse than the disease

I read the chart. I read the notes from the cancer clinic. Call it morbid curiosity — I call it chart review. Either way, she’s fucked.

She’s young. In her 50s, she’s smoked for years, in a region where radon has only recently become something worth educating the public about. English isn’t her first language, and neither is it her family’s.

She was diagnosed sometime around 2009, lung cancer. It’s untreatable with surgical resection, they tried radiation, even though her type doesn’t usually respond well to it. They treated her with first, second, third-line chemotherapy. A recent CT scan told her cancer doctor it had spread… to bones, to other organs, to lymph nodes. There’s lumps growing she can feel herself, and tell the cancer doctor if they’re growing bigger. They try a fourth-line chemotherapy agent, something palliative. They tell her, and her husband, that the cancer has spread, despite a year of debilitating, nauseating treatments. They are, “understandably distressed.”

She comes into the emergency department with signs of infection. Her lungs are somewhat compromised by the fact that there’s a tumor obstructing part of one lung. Her infection plus, god-knows-what, affect her lungs in such a way that I’m MacGyvering various ways in which I can keep her oxygen levels in some range that is compatible with life. The point becomes clearly made to us, throughout the day, that if she’s not going to die tomorrow, she’s going to end up intubated.

The intensivist explains to the patient, and her family, what is necessary. Unfortunately, due to the nature of being the doctor-in-charge-of-everybody-sickest-in-the-hospital, the explanation is somewhat harried and unclear. The explanation falls to the rest of us, the so-called “healthcare team,” to explain what’s necessary for the next few days. “There is a chance,” I say, “and not a small chance, that she may never end up off of life support,” I explain. I ascertain that what she wants is to be supported in the short term. I ensure that I understand clearly her wishes regarding the long term — that her life not be artificially prolonged, should we give her her week-or-so’s duration of ‘rallying time’ and determine, after a week’s worth of life support and drugs and everything-that-can-be-provided, that things are not improving. I ensure that her family, her husband, her children, her mother, understand that this is a very difficult decision to be made in the week-or-so to come, should things not improve. I try and be clear — English is not their first language either. She is very clear, herself — she wants to be kept comfortable, should what is killing her today turn out to be her cancer, and not the infection that we can treat with powerful drugs in a week-or-so.

They understood me. In no uncertain terms, they knew that this may be the last time they ever got to see her awake, and talking. This gave her husband the courage to ask the intensivist — a gruff and imposing man — for some time so that her daughter could come and see her before she became unable to speak. The intensivist has other priorities — either she ends up on the ventilator now or in a couple hours’ time, it won’t make a difference really as to the outcome since she is not yet at the point of crashing. The intensivist will return, and in that time, we-the-ICU-staff will do our best to ensure that should these be her last moments of wakefulness, they will be as meaningful as can reasonably be expected under the circumstances.

We bend the rules — two people in a patient room max, nobody under the age of 16 years, nobody after 8pm. We call their spiritual guide of choice. We are spiritually rewarded, ourselves — treated, somewhat bittersweetly, to the sight of her entire family in that tiny room, hands joined, chanting prayers together in their language.

This is a story that I don’t know the end of yet. It was a hard thing to be close to that much pain. That said, I feel better knowing that even if the story has a really shitty ending, that at least she had a chance to tell her family how much she loves them before she died.

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showing her the exit

The saddest situations aren’t the 95-year-old grannies who’ve lived good lives. They’re not the people who’ve abused their bodies until the wheels fall off. They’re not even really the accidental stuff, the traumas that, in a split second, change a life forever. The saddest things are the young people with chronic illnesses, the healthy people whose bodies just up and betray them one day. Arguably, the worst of these illnesses is pulmonary fibrosis.

It’s fairly rare — the stats on Wikipedia say somewhere between 10-30 per hundred thousand people — but it’s devastating. It’s one of those diseases where you seriously wonder whose mom you ran over in another life to deserve it. Your normally very elastic lung tissue is replaced gradually with scar tissue — which doesn’t stretch. It’s like breathing with a belt around your chest, and every day the belt gets just a tiny bit tighter until finally, you suffocate to death. The treatments are generally just big-gun immunosuppressants. There’s no real specific treatment. Most people are dead within 5 years.

There’s no nice way to slice it. It sucks and it’s awful. Who can handle being given a death sentence and told “there’s nothing we can do”?

She’d been told that when she was in her 20s. She suffered through the shortness of breath, dragging an oxygen tank around with her. She was young and healthy otherwise, though, and so ended up on the transplant list. A lottery where if you win, you get to live. And lucky her — she won a pair.

I’ve heard it said that a lung transplant is trading one chronic disease for another — and it’s the truth. The antirejection drugs they give you after the transplant make you more likely to get infections that’ll wreck your lungs — it’s not uncommon to get colonized with something strange. Your new lungs aren’t connected to your nervous system so your cough reflex doesn’t exist. The drugs come with their own side effects — unpleasant ones.  And sometimes your lungs come with pathogens of their own that you didn’t know about until after the recovery period.

She lived for months inside a hospital, slowly and tediously recovering from an illness that lay waste to the landscape of her body. She nearly died of CMV pneumonia. Her new lungs ended up getting destroyed and her shortness of breath came back. Again, she felt like she was suffocating to death. And then, the transplant center told her she was in full blown rejection, that there was nothing they could do, and that she should go home and get her affairs in order and be with her family.

I first met her because she had asked her family to help he commit suicide. She had suffered for years at this point. She remembered acutely what it was like to feel like she was suffocating to death, and she was terrified to die that way. So terrified, in fact, that she had begged her husband to kill her.

I provided no real respiratory therapy. Respiratory wise what could be done was being done. Instead, I sat on her bed and we talked, over her breakfast, while her husband snoozed in a cot by her bed. She described to me what she was afraid of: suffering. The reason she’d asked him to help her die was because she didn’t want to suffer; I ended up spending my visit explaining to he the concept of palliative care.

I explained that with diseases where you’re dying of shortness of breath, what we do is give medications to relieve shortness of breath. Ordinarily with respiratory disease we would not want to give medications that suppress the so-called “drive” to breathe, lest we worsen the situation. When we are palliating respiratory disease, on the other hand, the drive to breathe is what causes the sensation of shortness of breath — so we will in fact very deliberately suppress the drive to breathe, so as to relieve the shortness of breath. These medications are often sedating, so we only give you enough to make your time tolerable, so you can enjoy your time left with your family without suffering. Instead of increasing quantity of life, the goal is to increase quality of life.

She cried, cried and cried, her relief pouring off of her with her tears. She had so anticipated suffocating to death that to be told she doesn’t have to suffer was very relieving. Now, instead of feeling like her only way out was an act of desperation done in secret, she instead could pass away in a safe place, in relative comfort, with her family by her side seeing that she didn’t have to suffer. I saw her again a couple of days later and she seemed at peace. She’d spent some time touring the palliative care ward, talking to the palliative care coordinator. It seemed the relief had settled on her.

I was not surprised to find out that she had passed away only a few days later.

I think about how I got into respiratory to save lives, but in all honesty, I spend a good chunk of time helping people end them. I can’t say I find this disagreeable… I feel much, much better at the end of the day knowing I helped give a very sick lady what she wanted — a good death.

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blinks of life

Relatively speaking, with consideration for the span of a lifetime, the amount of time I get with a patient is rather short. Days, weeks, even months or a year don’t accurately reflect the fullness of a life lived outside the concrete box that is a hospital.

I don’t realize this at the time, really. There’s other things that concern me when they are in the ICU with tubes down their throats. It’s sometimes kind of striking later when you read their obituary and find out they were an avid hedgehog breeder, a rabid hockey fan (with pictures to prove,) or even, in another life and at another time, a hugely important civic personality, a philanthropist, a businessman or woman, or a humanitarian crusader.

It’s easy to lose sight of this. The depth and reality of an entire human life is such an immense time of otherwise indigestible details… it’s inabsorbable, at least in five minutes, or at most, a week or a month or a year. I will never know you as your family or your loved ones know you. I will never know you as you know yourself.

I am, however, quite treated to these little glimmers of what you are as a person. Perhaps it’s your common-law husband, talking to us while you’re comatose, of your philanthropic ventures. Perhaps it’s the name you’ve made for yourself in the community, the fact that the other healthcare professionals responsible for your life know what you’ve done. Perhaps it’s how you treat us, these faceless agents of the system, in how you call us angels and/or assholes. Perhaps it’s even being able to experience you on a daily basis, and to have you declare that you have adopted us as newfound family.

I keep the happy little moments close. Even if things didn’t go as planned. Even if you ended up passing on far before your time. Even if I have to endure the march of family following after your downturn, ensuring with their own eyes that indeed, the truth is real, that you are closer to death than they’d ever want to realize. I like to think about your personalities in the best of times, how you taught, how you advocated for your isolated community that only you cared about, how your wife loves you so much she would be here to watch you struggle even to the detriment of herself.

I won’t pretend that all that I get is positive. Sometimes you’ve been out of jail only long enough for us to declare you dead due to a gang-related incident. Sometimes you have no family, and the only people who see your beauty are those of us tasked with poking you with sharp things and wiping your ass. Sometimes you’re an insufferable asshole, and even your family physician will not at all hesitate in telling us exactly so.

I think the thing that I have most intimately learned in this situation is that I am completely unable to judge a person. All that I get are the tiniest sparks of life, the most washed-out and grainy snapshots of a person. You are something to someone, perhaps everything to everyone, or nothing to no-one.

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