There's a wonderful article over at The Atlantic called How Not to Die. It's worth reading in its entirety, but I wanted to summarize it here because the work of Dr. Angelo Volandes is so important.
End of life care in the US medical system is not good. At the same time it's very good, which can be very bad depending on who you are talking to.
Medicine has become so advanced that for those approaching the end of life--those with terminal illnesses, degenerative diseases like Alzheimer's or those elderly who are medically fragile--hospitals and doctors can administer procedures that can prolong the technicalities of life but remove all the dignity and pleasantness of it.
This kind of conundrum leads to a dire need of what Dr. Volandes and the medical establishment calls "The Conversation". Here's how Rauch, the author of the article, describes it:
The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired.He goes on to say that The Conversation happens far less often than it needs to. It takes time to have, and it takes good social and verbal skills to have. A doctor, or social worker (or death panel, if you listen to Sarah Palin) needs to explain to a patient exactly what his or her options are. Without emotional cues, without sentimentality, without judgement or pressure.
What's sad is that the people most qualified to have The Conversation--doctors--are not always the best people to have it. In some cases, they're the worst.
What Dr. Volandes is trying to do is create a series of 6 or 7 minute videos that can be shown to a patient to give them all the facts they need in order to have The Conversation in the clearest way possible. By actually showing them what the procedures are.
To me, the most poignant part of the article comes at the end, when Rauch is talking about putting Dr. Volandes' videos into context by remembering his own father's experiences with end of life care:
Volandes is explaining to me that tube feeding is overused in elderly dementia patients, but my mind has floated back to 2009. My father’s disease, by then, had destroyed his ability to protect his airway when he swallowed; food, drink, and saliva ended up in his lungs. He coughed violently when he ate or drank. Doctors mentioned tube feeding as an option, and well-intentioned friends nudged us in that direction. But his friends had no real idea what tube feeding entailed, and neither did I, and neither did he.It's so difficult to make these decisions as children or partners of patients, because who wants to be the person who decides against a feeding tube, which sounds like you want to starve your loved one? But when shown what a feeding tube actually looks like to a person who doesn't have much longer to live anyway, people are able to make peaceful decisions and spend their last days with their loved ones comforted by the knowledge that their final days are comfortable and peaceful rather than grim, clinical and artificially sustained.
“Let me ask you this,” Volandes says. “Suppose I’m having a conversation with you about whether your father would want this. And I said ‘feeding tube,’ and you’re thinking to yourself, Food, yeah, I could give food to my mom or dad. We just want to make sure that regardless of the way the gastroenterologist is presenting the procedure, the patient’s loved ones know this is what we’re talking about.
I hope you'll go read the article, as it seems that Dr. Volandes' dreams of having these videos be a ubiquitous part of end of life care is an uphill battle. It seems to me to be a goal worth supporting.