Tag Archives: end-of-life decisions

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

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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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