Dr. Peter Saul at TED: Let’s talk about dying

Tags: advance directive, death, end-of-life decisions, intensive care, palliative care, the good death

The weight of their grief

We approach the humorless with humor; I think it’s the only way to cope. Sometimes there’s nothing to be done. Sometimes it’s sudden. Sometimes it’s a sudden insult but death doesn’t come suddenly. Then, their watch begins.

The rules about how many visitors to an ICU room go out the window. As many people as that room can fit, and outside visiting hours too. Sometimes we break other rules too, to allow children and the burning of smudges. The treatment decisions are guided by family, not the doctors anymore. The doctors have washed their hands.

The neurosurgeon has seen the CT scan (ah, technology) and too much time has passed since the bleeding begun. Your brain, in a box. Increase the pressure too much and it becomes toothpaste squeezed through the hole at the bottom of your skull. The phrase we use for this injury is “not compatible with life.” It’s less politically correct amongst ourselves. There’s just joking: “go towards the light;” when we have to shut off life support sometimes we dryly refer to it as being “the grim reaper.” In his room, though, it’s different. Their vigil makes it a sacred space.

Those who enter do so only out of necessity, with more respect than even the cemetery commands. We are quiet and as discreet as we can be, but somehow it still feels like a violation to go inside and do my job. Moreover, it’s difficult to watch their internal struggle: they have heard our words, they know there is no hope, but they reach for it anyway. They are grieving not only the death that hasn’t happened yet but the lost opportunities for his recovery. They’re grieving their lost hope at the same time as his loss, and all their losses before it as well.

They share these losses with me when I enter, while he actively dies; they’ve lived through this more than once. I try and keep my words to a minimum, aside from condolences and apologies for my intrusion. I am more proper than I usually am, even on a good day. I ask if they want the door closed. I enforce silence in myself. It isn’t my words that they want.

When I leave that room I feel like I walk slower, my breathing and my body heavier. I am moving in slow motion through water, the resistance of the air demanding more of my strength. I am brought back to where I was, when I last experienced such grief. I say a silent prayer for the fact that I had no vigil, in retrospect the finality of these things is a gift. I try to shake off the heaviness of it all, perhaps remarking at it to my manager or a coworker.

It is impossible to be wholly unaffected when they only currency in use is hope, and I have empty pockets. I can’t make this easier. All I can do is try to remember enough that it’s harder to forget, as I will eventually, as I always seem to. I’ll be reminded again of their grief soon enough, except at the same time it won’t be theirs, it will be someone new, and the grief will be fresh, and I will have my task, to be the cup-bearer of the good death.

learning to take it seriously

I’ve had asthma ever since I was a baby, I think. I won’t lie and say that it didn’t factor into my decision to get into respiratory, either — I wanted to have control.

I’d always hated games with running. I remember hating tag in elementary school — I could never outrun anybody. Eventually my chest would get tight and hurt, and I’d cough and feel like I couldn’t breathe. I’d have to stop and then I’d get tagged, and I couldn’t tag anybody else. So I just didn’t play.

Mom put me in soccer. I hated it instantly, with its constant running after the ball. Other sports seemed like more of the same. This continued until I was about 13, when I walked into the doctor’s office (by myself) and demanded some kind of testing. I got a Ventolin inhaler and a referral for some testing. The testing showed airway obstruction with reversibility — a hallmark of asthma.

I had a problem, though. My parents had never taken me seriously about this (“You’re just out of shape” is something I heard a lot) and I had some real misconceptions about severity and proper treatment. I ended up at one point taking a steroid inhaler but I ended up with a lot of hoarseness of the voice (I later learned this is a common side effect) and eventually stopped taking it. I had no idea how severe I was.

It wasn’t until I was older, several years older, and looking to get into respiratory, that I had a second spirometry and learned to interpret what it means. I was a bit taken aback by the degree of impairment it showed — I had always thought I was relatively mild, that my asthma was “well controlled” with just my Ventolin inhaler to take when I needed it. (The truth was, my asthma had always been poorly controlled, and would remain poorly controlled for years afterwards.) It was the first opportunity I’d had to print out a copy of the testing and show it to my parents — “See, I’m not making this shit up” — and interpret it for them. I showed my family physician a copy — he was a bit tickled and compared it to the one I’d had done before — and he immediately adjusted my medication to better control things, seeing that my lung function had declined significantly since the one I’d had previously. It would be a few more years before I would learn that this was a bad sign, a negative effect of poor control, that poor control would sabotage my lung function slowly until I ended up like somebody who’d smoked for years.

Even after I’d gotten into respiratory, denial is somewhat of a strong impulse. I see these people who are wheezing and struggling, I do PFTs on the asthmatics who have even poorer control than I do (and perhaps, still smoke,) and I get the groove carved into my brain that this is what ‘severe’ looks like. My daily symptoms, my inability to participate in any kind of real ‘cardio’ without symptoms, my exacerbations which would have me wheezing for weeks on end, those didn’t register as ‘severe’. I had had poor breathing for so long that attacks didn’t frighten me. I could breathe through them and limit my activity. I could suck on cough drops and take my Ventolin only when the coughing was paroxysmal, with me gagging, doubling over, seeing stars.

Beginning work as an RT probably was the best thing for my asthma. I had peer pressure from coworkers when my tight cough manifested itself at work. I figured out something that worked for my symptoms — and ended up taking a fairly large dose of it to remain in some semblance of ‘control’ — but wasn’t exactly compliant with it. (I’m not alone, rates of nonadherence to medication are really high and is the main reason for severe exacerbations in asthmatics.) It wasn’t until I sought investigation for allergy testing that I got appropriately slapped for this.

Little did I know, the allergy specialist I was booked to see is also an asthma specialist. I didn’t expect my (terrible) spirometry to be put on display in his office, but there it was. I also didn’t expect to have to detail, in mortifying detail, my lack of adherence to my prescribed medication regimen.

I endured, hanging my head, my scathing lecture about how I should know better, about how my spirometry was all chronic changes, about how he should not have to belabour this point, about taking it seriously. I don’t know if it was internalized ignorance, I don’t know if it was mostly denial, but I do know I took this guy seriously.

I went home with a renewed conviction to take this seriously. I was adherent to the medication regimen properly for the first time since ever, and around about six weeks of this I had an epiphany. I could breathe. I could breathe and I was simultaneously amazed at how used to not being able to breathe a person could get. I had always thought that constant symptoms were normal, and I had a high tolerance for feeling awful all the time.

During this time, I took up running. I had always resigned myself to never being able to run. I amazed myself and conquered running, and found that after a small uphill battle training period I began to enjoy it. I began to become very sensitive to changes in how I felt and I learned to respond quickly to symptoms instead of suffering through them. When I had a significant exacerbation, I went to the doctor and went on Prednisone, instead of digging my heels in, instead of deciding that a month of feeling terrible was worth not having to take five days of oral steroids. I was shocked at how fast I felt better from the bronchitis that had me exceeding the recommended dose of bronchodilators.  I found the side effects were not as terrible as I had been led to believe.

I know now that I was playing with fire. I don’t entirely know why I did it, if it was denial or if it had more to do with not wanting to be seen as malingering. I do know that if I hadn’t done something about it, it very well could have killed me or left me critically ill. Now, I make it my mission to knock some sense into those like me, those lulled into the fog of thinking they’re not as severe as they really are, those that think they’re in control when they’re really not. Somebody saved my life once, by making me take this seriously. I feel the need to pay it forward.

on being called “a hero”

There’s a hazard to having a friend that’s a sociologist: she forces me to think about why things are the way they are. In this particular case, she’s turned me on to some interesting reading material that seems never to fail me for something to think about.

I am not unaccustomed to risky jobs, and the people who work in them. I work with paramedics, firefighters, prison guards,  the most commonly thought-of “life is on the line, he’s such a hero” sort of stuff. The book they’re talking about is right on the money: for the most part, they don’t think of themselves as anything other than ordinary people in control of an extraordinary situation. Any mishaps that laypeople consider to be risks inherent in the job (a cop getting shot, a firefighter dying in a fire) are not seen as particularly risky to the people engaging in them. I’ve spoken to cops about going into buildings armed against people who have gone totally butternuts and are armed to the teeth — the risks they talk about aren’t that they might get shot at — it’s the fact that butternuts in the shed over there isn’t predictable. They’re trained to predict what the rest of us think are unpredictable.

This, of course, thanks to the grooming of my friend the sociologist, makes me think of the times when I’ve been told I did something “heroic.”

Usually what happened is there was a very sick person in a very bad way, and I was part of a team of people who predicted the unpredictable and then responded. The response is to perform a number of different interventions in order to change the course of their illness or injury. I don’t think what I’m doing is heroic. I don’t think about how people are going to die if I screw up. I don’t feel the pressure, really. What I am is in control.

I can see the signs. I can measure and quantify how bad the situation is using specific parameters which allows me to manipulate those parameters with drugs or pressure or gas. I can control the oxygen or the respiratory rate. Sure, there’s a bit of a scramble trying to get to the point where you’re in control, when you’re on the move from prediction to execution, but you know what to do, so instead of being stressed about how it’s do or die time, you just stop thinking and do.

I find us RTs especially tend to think in “the worst thing that could happen is” sort of parameters. When others are afraid to extubate the patient we’re shrugging our shoulders going, “the worst thing that could happen is she/he gets reintubated.” To us, it’s no big deal. We’re trained to predict what the worst possible scenario could plausibly be, and then be prepared for it. We controlled the airway by putting in a tube, we did it once, we can do it again. If I can’t do it personally, there’s someone close by who can.

I remember a couple of these do-or-die situations happening to me and there was a lot of muscle memory in that st0p-thinking-just-do. A sick neonate thrashes a bit on the overhead warmer and self-extubates, and there’s no pediatrician within a shout’s reach? I’ve been trained for this. They taught me how to intubate precisely so that I could respond to this situation. Paralyzing myself with fear and waiting for the pediatrician to haul his ass into the room is an option, but the worst thing that could happen is I try and I miss. I’m also trained in what to do in that case: the patient would be no worse off for me missing. Besides the fact that I’m qualified and trained and skilled in intubation — the patient needs it right bloody now. If I waited for the pediatrician I’d feel like I had chosen the wrong line of work and would probably quit soon and go become an accountant. What I did was grab the (conveniently located) necessary equipment and make with the intubating. I know what has to be done, and I’m qualified to do it, so I do.

There are those times when despite your best efforts you lose control of the situation. Just like the firefighters do, I find we look for something to blame. Somebody screwed up, somebody didn’t notice the alarm, the monitor was malfunctioning, I gave up too soon and should have kept trying, we didn’t get there in time, they waited too long, and so on, and so on. I failed to predict the outcome. I failed to respond accordingly to the situation in the way in which I was trained. I look for how I could have gained control, therefore, I don’t really fear the loss of life that happens due to variables that are beyond my control.I learned very long ago as an RT that there’s some parts of the clinical situation that you just can’t change.

I’m scared of screwing up or missing something, I’m scared of missing the prediction or failing to respond. I’m also confident that the longer I spend in control and the more I refine my muscle memory, the more I lift the mental weights that allow me to consider more of the situation, the more that muscle memory allows me to automate simple tasks so I can spend more mental energy being observant to other signs, the less likely it will be that my simple screwup results in somebody’s death.

It’s happened in the past: I’ve failed to notice a sign that the patient was in cardiac arrest and then the patient died. That said, so did everyone else in the room fail to notice, and given how sick the patient was prior to going into cardiac arrest, the chances of us being successful even if we’d caught it were pretty slim anyway. No one person killed that patient. The culmination of many factors did, and some of them were beyond our control. Did I learn a hard lesson? Yes, I did. That one’s a notch on my proverbial shield that I’m not ever going to forget — and the next patient will benefit from it.

Therefore, by the same token, no one person involved in saving another’s life is “the hero.” The collective sum of our teamwork and brains and muscle memory and situational awareness and skills are the heroes. We just predicted the unpredictable. We executed our plan for how we were going to gain control. We gained control of the situation quickly and effectively, and then we held on to it. It holds no mystery to us.

We are comfortable.

when he said thank you

I hugged him, with one arm, afterwards. I hugged him because he was afraid.

He’s a pediatrician. It’s that season, you see. The season of kids with hideous gastroenteritis, the season of dehydrated little tiny people who are justthisclose to having one of those near-death situations we talk about in PALS so much.

This little one, her heart rate was over 200. She met the standard definitions of shock. She needed a lot of fluid, and fast, before her little heart wore itself out from beating so fast. I only got called to do a cap gas really. If the results aren’t that bad, I don’t ordinarily return to the room. This was one of those situations when I returned in person to the treatment room. This child was doing that eyes-rolling-back-in-her-head-breathing-is-optional thing, being stimulated by nurses rubbing her sternum with knuckles to try and get her to wake up and take a breath. This child was close to having a cardiac arrest. These poor nurses were doing everything they could prior to the pediatrician arriving kind of thing. These poor nurses had poked this poor baby 20 times or more.

By the time the pediatrician had arrived, the favored major sites had been poked to try and get an IV. I could hear the echo of my PALS instructor (another pediatrician) in my head: “how many times do we poke and poke and poke with these sick kids, when we could just do an IO then and there, and leave those veins for after they’ve been rehydrated?”

I had nothing respiratory to do, other than prepare. I changed my mask on my bagger. I had my intubation equipment ready. I was planning for the worst, and, at the same time, I was prodding my pediatrician: “just put in an IO, just do an IO, the gun is six feet from where you’re standing, why struggle with trying to put in a fragile IV in the scalp you can’t pound some real fluid in anyway, just put in an IO.” I was naive about his previous experiences with trying to put in these fabled beasts into small children. I was unable to put myself in that picture, of the child who had suffered through multiple attempts. I was that ignorance-is-bliss voice-of-reason, where I had no clue that he had tried this before and it’d gone horribly.

He did it anyway.

After multiple attempts at an IV cannulation in this very small, very dehydrated child, he finally pulled out the IO gun to drill a needle into this tiny person’s leg bone. It’s a very squick-inducing thing. Had it not been the best method of getting some life saving fluid into this baby, I would never have suggested it. How necessary it was became obvious when they drilled into her leg and she didn’t even flinch. In goes the IO. A very large amount of fluid gets pounded into a very tiny person and very quickly does such a baby begin trying to put the ECG lead cables in her mouth rather than her eyes rolling back into her head. Relief.

“Good, her heart rate is slowing down” (from the 200 earlier, I”m thinking,)

“Great, mine too,” the pediatrician says, and my heart goes out to him.

He, in truly heroic fashion, later thanked me for making him do the scary IO thing he didn’t want to do, later. I replied with a smile and a one-armed hug.

I am so pleased to have these relationships with the doctors I work with. I chafe to think at how I would work with someone who would not be receptive to input. I am extremely pleased that in this case, this child lived, and am perhaps in this case, not so immodestly proud as to think of how I perhaps may have helped to save this baby’s life by being a right royal pain in the ass.

I love my job.

equipment monkey

It’s all at once an amusement, a pain in the ass, and a blessed distraction to be one of the only direct-patient-care health professionals that keeps a toolbox in her office.

I feel a certain sense of pride and accomplishment when I’m walking down the hall past the ICU, packing a two pound crescent wrench, or a pair of pliers, or an assortment of screwdrivers and hex keys. I work in this normally sterile environment and here I am getting my hands dirty, hauling tanks, spinning nuts and bolts, tightening connections, taking apart malfunctioning equipment to fix it, replacing bulbs and batteries and sensors and analyzing cells. Some equipment is less dirty than others; tanks are by far the dirtiest job. Some equipment is bigger and heavier than others; the blood gas machine is by far the tiniest and most finicky.

On the other hand, being the only person in the building besides the biomed (and the one who keeps the more extensive hours) I end up being the one getting phone calls about “why is this leaking” or “this isn’t working and I need you to come take a look at it” for pretty much any piece of equipment I lay my hands on in my scope of practice. It becomes somewhat frustrating when I have people to deal with (people can’t lay broken on the counter for a month and then be fixed at my convenience) but at the same time I rely so much on the equipment in order to do my job that it becomes just part of the job to ensure that what I rely on is optimally tuned and ready to go.

At the same time, while it can be grating to get multiple phone calls to come fix a piece of equipment that can wait, it’s absolutely lovely during times of “office” drama to be able to disappear with my toolbox and let them all hash it out.

I think the tendency for us to be the fixers comes from several sources. There’s first, the fact that my entire job revolves around equipment. Oxygen equipment, pulse oximeters, the ventilator, suction equipment, intubation equipment, that damned blood gas analyzer, and on and on and on. Then there’s the fact that since so much of my job is equipment, a significant chunk of my training is troubleshooting equipment. When you’re keeping a patient alive with equipment, you’d better know how to troubleshoot when things start to go awry. (Significant in this training: “is it a problem with the equipment or a problem with the patient?”) Lastly, and this is just a loose theory, there seems to be this predilection towards mechanical inclination that’s common among RTs, and combined with all of the above, when there’s one of me and between two and twenty nurses watching me do my job, it becomes common knowledge among the healthcare team that I’m the one who just knows how to fix things. I imagine that’s how I get roped into performing a 3am-on-a-Saturday resuscitation on the printer, anyway.

With so much more equipment being software-controlled, there’s going to need to be an inclination towards computers moreso too, I think. Maybe not so much as the biomed needs, but it’s looking like it’s going to be more and more necessary to troubleshoot software problems as well as problems with the mechanics of it all.

All in all, though, I’m happy to be the one with the toolbox. And not only because when I’m resuscitating equipment, if my patient dies, with enough tools and time and parts and knowledge, I can pretty much always bring it back to life.

Tags: biomedical engineering technology, critical thinking, gear, troubleshooting

he walks alone

Many of the stories I have to tell aren’t really my stories. They’re the stories of others. Sometimes it’s the patient’s story, sometimes it’s the family’s story, and in this case, it’s the surgeon’s story.

She had been told she had to have bowel surgery to resect a tumor. She was quite frightened of this because she’d seen it happen to other members of her family, and they had gotten quite sick and nearly died. She was terrified of what would happen, especially after the surgery, when an arduous recovery would not necessarily mean that she was cancer-free.

She procrastinated. Her procedure, while not exactly elective, depended on her consenting to the surgery, and so she put it off. As is wont to happen with cancers, and especially gastrointestinal ones, she became more wasted as the weeks wore on, her body unable to properly absorb the nutrition that she was able to keep down.

Finally, the day came where she reached the point of no return. She presented in emergency gravely ill, with suspicions that her bowel had perhaps obstructed and perforated. She was operated on by one of the best — I didn’t enter into that equation until after her surgery.

She’d arrived decompensated and in poor condition and required a lot of blood during surgery. As happens somewhat rarely, she had a transfusion reaction. This precipitated respiratory failure and my involvement. Sadly, due to multiple factors, including how truly sick she was going into the surgery, her body failed to rally. Her surgical sites refused to heal and broke down, requiring further laparotomies. Finally, after returning to the operating room for the tenth time, the surgeon threw up his hands. There was simply no more bowel left to resect. Either she would recover, or she would not.

I remember a conversation that I had with him in the hallway after he had discovered she’d have to go to the theater for the last time. He had taken very personal care of this patient, not handing her over to a colleague even over the Christmas break. He poked his head in on her every single day that he was physically able to.

“You know, you think you do a good job…” he said to me, shaking his head. Knowing only the little that I knew, I tried to offer some meager reassurance that he had done what he could with what he had, which was arguably not very much to begin with. He simply shook his head and walked, alone, down the hallway to get the patient on the slate for surgery.

He carried the entire weight of this person’s recovery on his shoulders. I can only imagine how he’d felt when she began the downward spiral towards her eventual death. Especially being as he’s South African, reading Bongi’s post about the graveyard made me think of him. There most certainly is a tombstone somewhere in this man’s mind, with that woman’s name on it.

Tags: professional grief, surgery, the crapshoot