Complex, painful and expensive medical procedures at the end of life

It isn’t that it was a bad day, because it wasn’t really. There was too much work, yes, and I ended up staying late, but it was mostly made of good interactions and I felt generally competent. So, no, it wasn’t just a bad day. Still, this evening I feel like the best possible future would be one in which there was no technological medical care, where we just worked on sanitation, vaccinations, good nutrition, maternal health, mutual respect, stuff like that, maybe even penicillin, and called it good.

The stuff that is bothering me is use of really high end technological medicine to prolong life at its very bitter, and I do mean bitter, end. The woman found unconscious at home after not breathing for so long that her brain had died, kidneys had quit, but her heart still had the ability to pump, so she is in the intensive care unit receiving constant dialysis, on a ventilator with intravenous nutrition and scads of tests every day, all for the expected outcome of death, soon, or the less likely outcome of being able to breathe on her own so she can live in a nursing home with a feeding tube. Or the woman with cancer who has a huge ulcer on her bum, down to bone, which will take months to heal, leaving her in a nursing home and weaker than when she got it in the first place, all for the privilege of dying in pain of her incurable and progressive cancer.

Oh, and did I mention that they will start dialysis for her kidney failure so she can tolerate the surgery for her bedsore so she can heal to go to a nursing home to get a different bedsore so she can start chemo again so she can slightly delay her inevitable death of cancer? And the wraithlike man on dialysis for 11 years, only skin stretched over bone now, in constant discomfort and now failing to be able to even maintain his own blood pressure, who has clotted off all of his dialysis access so they will put a new temporary dialysis catheter in his chest tomorrow so he can live to go to a nursing home where he will lie in bed waiting for visitors or for the nurse to come give him pills and get dialysis 3 times a week until his catheter becomes infected and he is again admitted to the hospital to be saved again.

It feels like we are just playing with these peoples’ lives, giving them these ridiculously complex, painful and expensive medical procedures just because we can, not because they have value. And they are expensive, man they are expensive. Each of these will cost hundreds of thousands of dollars, if not in excess of a million dollars in some cases. If the money was nothing, well then it would be fine, or not exactly fine, but not so horrible, but the money isn’t nothing. This sort of thing is strangling our economy and having an impact on everyone’s life. Much of this expensive and inappropriate medical treatment is going to the very poor and the very uneducated, the smokers, drinkers, abused, neglected, educationally left behind, because these people are the sickest and the least likely to have had discussions with providers about what they want to get out of life and out of medical care. These people are bamboozled into thinking that what we give them, our fancy machines, our pull-you-out-of-the-mess-you’ve-gotten-yourself-into-one-more-time procedures, actually will give them something good. In fact, mostly, they just cause long term disability and dependence.

At this point the non-ranting part of me, the let’s be fair, there sometimes are good outcomes voice in my head is asking to be represented. Sometimes people are saved and they go on to get clean and participate in activities that enrich the lives of themselves and others. Cool. And also sometimes I think that for people with really rotten childhoods, an interaction with a loving and respectful medical staff is good in itself. But most of this good is achieved without our incredibly fancy and tremendously costly toys. And we are making new ones all the time, despite regulatory agencies that make it more difficult. These toys are things like newer ventilators that can force oxygenation out of lungs that are wet and squishy and over stretched, dialysis machines and heart lung bypass that can do the functions of the human body while it can’t run itself. Beds filled with air like floating on clouds, that might prevent bedsores. And potions, how we love the potions we use, so everyone gets an antibiotic, or 3, and we can support peoples’ blood pressures which means that they stay alive a little bit longer, but actually just die pretty soon anyway.

And the regular drugs we hand out like candy, blood pressure and heart pills that are incredibly powerful, but also deadly in combination with a little kidney dysfunction, a little diarrhea with dehydration and a little ibuprofen. I just today saw someone with that combo, potassium level over twice normal, would have been found dead had he not dragged himself in. Preventable. I’m not entirely sure why he wasn’t just found dead on his floor, but we will save him.

It feels like we are creating a race of zombies, walking dead who don’t know that they are dead, because we didn’t tell them. We never discussed how death is a part of life, and that we don’t get to decide whether we die or not, but we can have some input on how it looks and feels when we go. No discussion of the fact that the value of a life is not directly proportional to its length. I think these folks deserve better.

But, big caveat, I am not against all intensive care or resuscitation. But, just like not everybody needs the highest end whatever, intensive care, life sustaining therapies, resuscitation, really isn’t appropriate for everybody. Just because we have it doesn’t mean we need to use it.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

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