a perfunctory passing

If we ever had a fly on the wall when we talk to each other in ICU, in the RT department, they’d think we’re heartless.

We have a pretty intimate relationship with death. Death isn’t unexpected here, and it’s rarely sudden. Most deaths are well anticipated, planned for, welcomed even. The family may not anticipate it the way we do, but we have seen that shadow on the horizon many times, and we know it’s coming. We see small signs, we know the diagnoses and have a solid understanding for when it’s a lost cause. Usually, there’s nothing in writing regarding how the dying wanted their death to look. Few people plan their own deaths; usually these people are cancer patients, and not everybody dies of cancer. Those who have chosen to use and use up their bodies are especially prone to poor planning, which means when their end-organ failure catches up to them and assures their death is inevitable and probably soon, we find ourselves lost in the grey area between patient wishes and family wishes.

The dying is usually unable to give us much input at this point; especially in the elderly, especially with organ failure, confusion is common and not readily reversible. People also don’t talk about their deaths with their family. They might talk about it with their next-of-kin but they’re usually vague. “I don’t want to be put on life support” is a really vague statement, how do you respond when the doctor says “we want to put a tube down his throat”? Without specialized knowledge, how do you know they’re talking about life support? All that’s obvious is that the doctor wants to do something to stop his inevitable decline into the grave. What’s not obvious is that the doctor isn’t telling, the doctor is asking, and in that grey area, the answer they want is a clear end-of-life decision.

These are heavy decisions to make on the spot, and people need time. There is no small amount of grief in circling around this decision, the discussion between family members about whether they want to throw in the towel and accept that this really is the end. We can see it: the liver failure, the kidney failure, the heart failure, the respiratory failure. We can compensate for some of these things somewhat for a small amount of time, and we often do, in order to let people come to terms with that decision. But we, as the seemingly prescient-ones, know how close he is to the edge. We know that our various treatments and therapies and interventions and invasive procedures are only buying time. We whisper it to each other: “He needs to die.”

It’s said glibly, and we understand each other. We are not saying that this person’s life is insignificant, we are saying that this person’s natural death is being held off by medicine. We know which organs have failed and how completely. We know there’s no feasible way for this person to live a life unencumbered by pain, immobility, incontinence, isolation, and pathology.

Similarly, we know that the family is afraid, grieving, dealing with that process first before death even comes. We know the situation is emotionally very fraught. We know that what’s best for the patient is also what’s best for the family: we need to find a middle ground where it’s not about freeing up an ICU bed, where it’s not about medicine giving up on somebody and putting them on an ice floe out to sea. The middle ground is when we can present reasonably that what we want is to give the patient a kinder, gentler passing, one eased by painkillers and anti-nauseants, anti-anxiety drugs, and peace and calm. We don’t need to be convinced of these things, so we communicate in short-hand with each other.

“He needs to die,” we say, and the rest of us nod solemnly. What we mean is that his body wants to die, that without some form of life support he will surely die soon. What we mean is that he is living on borrowed time, at the expense of his comfort and health. Life support is not a benign thing; it is almost always inherently invasive, and with invasiveness comes risks.

We don’t usually go that far. Usually, all it takes is being honest: bring family into the room, show them what we see, show them his organs are failing and that he has a limited amount of time. They are encouraged to spend their time while they have it, and we stress to them that anything more we can do will only cause more pain with no true healing. There’s true understanding then, at the end, where they see what we see: that death will be soon and inevitable, and it’s only a matter of how easy we can make it on the dying.

And then after, when the family has finished streaming in and out, when the patient has been whisked away to the morgue and the bed has been cleaned and left as prim and pristine as it was when they arrived, when all trace of their presence has been erased, the next shift comes on, and asks where the patient went. “Oh, he died,” we say, and the next shift nods with relief.

“Oh, that’s good,” they say, a quote which when taken out of context sounds callous, from such a caring profession. Out of context it’s hard to understand why we’d be happy to hear somebody died;  he got what he needed, and what was best for him.

the ounce of prevention

A code that came in this weekend brought me back in time about a decade.

He came in dead, and he left that way too, as these things are sometimes wont to go. Later, after the post-mortem, the infection control officer did her customary chasing down of the staff members who were at the code. Seems the patient had meningococcal meningitis, a severe infection of the brain linings caused by a bacterium which spreads in the droplets of respiratory secretions. The infection control officer was there with a stack of prescriptions for antibiotics, a dose of which we all had to take to ensure that we who were exposed would not succumb to this infection.

The scariest part about meningococcus isn’t antibiotic resistance (MRSA) or disease mutations in animal hosts making the pathogen more dangerous to humans (H1N1), but rather how fast the disease progresses from an asymptomatic incubation stage to causing severe brain damage or death. Vaccination is available against the infection but vaccination campaigns in Canada haven’t been part of the routine immunization series, so herd immunity is nonexistent. The last time a number of teenagers died of this vaccine-preventable disease was when I received my immunizations against it.

About ten years ago, several high-school aged kids where I lived contracted meningococcal infection. Some of them got treated early enough on for meningitis, but the unlucky ones ended up like this kid. The infection overwhelmed their bodies, resulting in a the typical meningitis-type rash growing and growing into purpura, a sign the infection had caused DIC. At that point, the sepsis had progressed so far that the likelihood of a good outcome was extremely poor, and as a result, two very healthy kids died very suddenly.

Meningococcal disease is downright frightening, and is one of the few examples of infections you shouldn’t wait to get antibiotics for. It’s one of relatively few infections that, even in industrialized nations, still kills people fast enough that a matter of hours can make the difference between alive and dead. It’s one infection where the best treatment is that ounce of prevention: vaccination for those who are at risk. It’s one infection that emphasizes how important vaccination can be in avoiding preventable deaths. It’s one infection that really lays bare how little the medical community can do if we don’t catch you in time. And it makes it very starkly clear how dangerous it can be to not pay attention to your body.

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

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.

even when it’s different, it’s always the same

It’s funny how reading news stories bring back memories.

It’s always awful when a new mum dies. It’s usually such an awful death, too.

I remember the first time I ever was at a birth like that. An emergency section, an abrupted placenta. Baby’s heart rate frighteningly low, respiratory came for baby, and ended up with front row seats at the show. Enough bleeding for a horror movie. More bags of PRBCs and FFP than I had ever seen before. Fluids, fluids, fluids. I’d been at many c-sections before and they were all elective, scheduled, methodical things. The most tension in the room was an obstetrician demanding a student justify their presence or an anaesthetist calling someone out for making a mess of the OR with gloves covered in baby cheese. None of this wide-eyed adrenaline, the obstetrician and his assistant scrambling to get the baby out as fast as possible, the air thick with the sense of urgency. The jokes about us making him feel like a “real obstetrician” lighten the mood only the tiniest of margins. There’s a little person in there, and it’s not exactly scheduled to come out.

This story, however, is about the mum. When mum gets sick, or something horrifyingly bad happens. These scenes stick in my mind forever, not only because of the family, the husband, the tiny baby. The father and tiny baby aren’t there to see those last five, ten, thirty-five minutes. Just me, and the code team, there to witness what will later be described in one sentence.

Pick your pathology, really; there’s no shortage of pathologies that can cause this type of thing. The one that crosses my mind when thinking about these events is the amniotic fluid embolus. A seemingly normal birth, a happy fresh baby, an elated family. The endings of birth didn’t stop the bleeding. It continued and continued, and what began as a mild worry quickly escalated into a high-strung fear. The bleeding wasn’t stopping.

The infusions of blood products are really only a stopgap measure. By the time her heart stops, it’s already too late. We can only infuse so much. I have, arguably, the easiest job: stand at the head of the bed and watch, while I make her limp body breathe. Everyone else is scrambling and using their brain. I, I am standing there with one hand on the bagger and one hand on the yankauer, suctioning blood that flows freely from her lips, nose, eyes. It seems wrong, these young people coding in our ICU. As if the codes should all involve 90 year olds who were ready to let go. All I can think of, while watching this person die of DIC, is their husband, their family members, their brand new baby.

It’s been a long time since women routinely died in childbirth. These events are admittedly quite rare. But they happen. And when they happen, everything inside me twigs about how abnormal it is for a new mother to die in this place of western medicine and modern cures, of nothing other than having a baby.

the one who doesn’t cry

An unanticipated death; some professional embarrassment in there for good measure. Difficult, due to the fact that the one who died was a child, and a sweet one; that, and the fact that it was likely our fault in some way. (The reader is left to imagine the multitude of ways in which one person in a team of probably hundreds could be possibly at fault. Trust me. We’re all wondering the same thing.)

A debriefing; listening to the vignettes of the family and the child from the circle of chairs in the playroom. Some tall people on some tiny chairs, wilted from night shifts, or the ones fresh from days off, with perfectly applied makeup. They had a long time with this baby, they laid down in his bed and hugged him, patted his tummy to comfort him in that way they had seen his dad do, taking him to the playroom instead of starting his feeds … interviews with mom … years of past history … perhaps wondering why they hadn’t intervened earlier.

If there’s anything I’ve learned through a multitude of shitty situations, a multitude of debriefings, it’s this: no matter what is your fault, it’s over. Learn from it, for it’s the only possible positive outcome of an entirely crappy situation. Beating yourself up about how it could have been better if you had the power to go back in time and fix your fuckups is ultimately a failed exercise in self-loathing, and the self-loathing is an obstacle to learning: what’s happened has happened, so learn for next time, and prevent it from happening again.

A lot of that happened in that debriefing. From the strong and silent among us semi-blaming themselves, knowing what they’d do different, to the ones who have what seem like the easiest jobs in that they are only so tangentially involved, nearly everyone seemed upset nearly to the point of tears.

Except me.

It came to be my turn near the end, and I spoke of equipment malfunctions, problems with sensors, recalibrating X and Y, and of being pissed at myself (not blaming) because I had been so absorbed in the equipment that for that critical minute, I forgot to look at the patient. I wasn’t upset at the death of the kid, I was more pissed at myself that I had immediately jumped to the conclusion that the equipment was messing up on me.

To be fair to myself, the rest of the equipment hadn’t exactly been working as intended, and I’d had problems from the get-go. Things were quiet and stuff that should have been watched wasn’t, but it’s hard to not feel a bit like an uncaring goon when the people who weren’t even there for the arrest seem significantly more shaken up than I am.

It’s remarkable to me because, I think, this is not simply because of respiratory or because of the sheer amount of times I’ve been there when somebody’s died. I don’t think it’s that I’ve become desensitized or somehow heartless regarding the whole incident. Indeed, I was upset about it — I just did all my crying immediately afterwards and not in the debriefing. So it goes.

I think, however, that last paragraph is a bit reflective of how RTs are. We have the face we show to the rest of the team, and then there’s the things we say, the stuff we complain about, the opinions we share, the discussions of what bother us, the planning what to do next, that we all do behind the closed door of the respiratory department. The reason I never cry at organized debriefings, the ones headed by a social worker or someone with training for crying people, is because in order to keep doing what I do, I have to do it every day, by myself, behind a closed door. More often than not, I do it with other RTs. Sometimes, like the particular instance that struck me this time, I end up doing it at 2am with other health professionals, like the nurse who gave me a hug before I cleaned my vent and went home to bed.

I think it’s healthier that way; that I know how to debrief so that I can sleep, that I do it automatically and without needing hand-holding or prompting. I think it’s what means I can do my job without having a nervous breakdown.

Long ago I used to worry that not crying about these things meant I was getting callous and gritty, jaded and bitter, all those things that they usually say about surgeons and cops. I don’t worry about those things anymore: I think I have a better understanding of grief and attachment as a result of having done it more times than I can count. I can survive without losing compassion. Maybe some would call it tough, but I hate that word for this. It’s not some kind of machismo bullshit need to appear all stiff-upper-lippy. It’s just self-preservation. I can sleep without waking up screaming, I can go to work the next morning, and I can still have fun at work. I still love my job. No matter how shitty it gets, I plan to. For a long, long time.