Tag Archives: the good death

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.

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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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