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.

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.

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.