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This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience th
by jcims 3y ago
This article so clearly articulates the same chaos and uncertainty that I experienced in this exact same process with my wife’s cancer. The same experience that motivated my comment in the AskHN a couple of days ago asking how to engage the healthcare community to find opportunities to build something useful [1]
“Bess and I have learned not to wait. The healthcare system often moves slowly, and it’s good to be agentic. Insufficient agency is how people die while waiting for some indifferent bureaucrat to get back to them, or for some other bureaucratic process to spin up before the rapidly dividing cancer cells spin someone down”
So many little statements in that article ring true but I felt this deep in my core. Your notes about the onc being on vacation resurrected a little taste of the bile I had in my heart for the infuriating pace of everything.
I got to a point of deep, seething hatred for it all until one day my wife’s surgeon broke down crying on the phone. That little glimmer of humanity in what felt like a giant broken machine made me take a moment of pause and consider that some of the seeming indifference and immunity to the urgency might be self-protection. I have no idea what it’s like to work in a field where progress is so slow and the stakes are so high.
I wish you the best and thank you so much for sharing your journey so vividly. I think it really may be useful for those that find themselves in that same crucible.
1 - https://news.ycombinator.com/item?id=40089389 https://news.ycombinator.com/item?id=40089389
- short_sells_poo 3y agoI'm sorry for what your wife and you have gone through and I cannot imagine the frustration caused when being at the mercy of a seemingly uncaring bureaucracy and having little power to do anything. I do think that more often than not, the doctors appear uncaring because they're under a very similar feeling that you experienced - but all the time. If they don't build emotional barriers, they wouldn't be able to cope. I feel this is doubly true for areas like oncology where death is a much more regular occurrence and can happen even when everyone has done everything right. I cannot fathom the feeling of having to see people wither away, to see family after family lose their loved ones. Any doctor who doesn't learn to completely distance themselves from it all is probably not going to last.
- somenameforme 3y agoI think it's pretty easy to see things from the perspective of those in the medical field. You're treating a vast (and ever growing) number of people each year, you're overworked and buried in paperwork, and in the end - regardless of how much personal attention you dedicate (or don't) to somebody, their odds of survival are not going to change much. It's soul crushing work that's often paired with lots of quite dark humor. The more death you're around, the darker and more frequent the humor becomes, to the point I don't feel comfortable offering examples here. It's a coping mechanism. And then after all of this you need to go to the next patient, smile, and do your best to make them feel comfortable and completely confident in everything you say, all the while they [understandably] see their or their loved one's case as the single most important thing in the world. If you want to create a tech solution for something, it would definitely be the paperwork. But it's mired in a million rules, regulations, and restrictions that alone probably make any sort of effort to streamline it probably unworkable if not unlawful.
- jcims 3y agoIt is when you sit and think about it of course. Our family has always had very dark humor and our daughter started her nursing career a year after her mom passed. No examples needed lol. The challenge is maintaining that empathy in the face of an incredibly callous system.