Comment by geocrasher | Hacker News Reader

Comment by geocrasher | Hacker News Reader

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I read this article in full, and I have to say: Amen. This subject has a deeply personal meaning for me.

I watched my wife go through similar things. Her stomach stopped working, and even with groundbreaking surgery and one of the top 10 gastroenterologists in the world at her side, nothing could be done. She tried to get treatments that she thought might help, until one day her GP just down the road finally told her what no doctor had the guts to say out loud: "you're dying."

That was a punch in the guts. That was late November 2019. She'd just turned 45. She went on hospice care just 4 months later. Hospice care was the best medical care she'd ever received. Finally she was in less pain (but still a lot of pain- starving to death is the opposite of pleasant). Finally able to have one on one care with a nurse who genuinely cared about her.

She passed away at home in February 2021 at 46 year old. Nobody tried to violently resuscitate her. Nobody stuck tubes in bad places. Nobody caused her more suffering in order to prolong her suffering. The green paper on the wall said so. One of my own biggest fears was having our home invaded by EMT's and police, with EMT's shattering her frail body to try to save it. But that never happened.

So, doctors have it right. Die in peace the old fashioned way, if possible.

I'm so sorry for your loss. I'm not sure if that means anything; coming from a random stranger on the HN. But thank you for sharing what must have been an unimaginably difficult time for you.

Im so sorry to hear about your loss. Standing by and watching a loved one go through this is truly awful. I had a tear in my eye reading your story, it is very familiar to me. My mum went through something very similar over ~4 years.

She had a minor relatively non-aggressive but unusual cancer. It was removed and she had optional radiotherapy to be sure it didn't return. She bounced back great - but then the odd stomach issues started.

No doctor could find or diagnose the cause. She was slowly fading away and getting weaker and weaker. She spent more time in hospital than out. She was always at the mercy of the next life-threatening PICC infection. The only explanation we ever had for the gastroparesis was that the radiotherapy damaged the nervous system around her stomach. It was years of misery and suffering, all the while propped up by TPN through starvation. Eventually she found her release, but like you, it changed my perspective on life and dying.

I am so sorry your family went through this for so long. Watching somebody you love slowly starve to death is unimaginably awful. But I have gone through it. To say "hang in there" isn't enough. Thank you for posting your experience.

I'm really sorry for your loss, I can't imagine losing my partner. Thanks for sharing your experience, like the article, it's quite eye opening.

Thank you, and you're welcome. Some good can be had from the experience. Empathy, hope, and the drive to always look for joy even in the worst of our days. It's what my wife was known for doing and it's something I have to give myself permission to do every day.

So sorry about your loss and thank you for sharing.

Hope this isn’t too personal a question, but you mentioned her stomach stopped working. I was under the impression that with modern medical care people can actually live without a functioning stomach. Is this incorrect or was there something else?

I don't mind answering. I gave the simplified version. Her body would not accept nutrition via the stomach, the upper intestine (jejunum, a J-tube) or intravenously (TPN). While the doctors were unable to diagnose anything more than gastroparesis (think "gastric paralysis") we (the family) suspect that there was a deeper systemic problem that the medical system would never have caught. Perhaps she had a disease that is extremely rare or as yet unidentified. Everything about it was atypical.

Thank you. An unfortunate reminder how much we still don’t know about the human body.

I didn't realize it was even possible for the body to not accept nutrition via TPN.

Right. It was so weird to see her get sick every time she started a bag of TPN. They tried different formulas, even exotic ones from overseas that were new to the market (and very costly).

My theory is that her body rejected nutrition in general and that the gastroparesis was just a symptom rather than a cause.

I've got a truly crazy level of food sensitivities and my mother was just about as badly off--and that makes me think of a slightly different theory that has worried me and I suspect applies to your wife:

Rather than rejecting nutrition in general the scenario that concerns me is reacting badly to something essential. All it would take is one component, not all nutrition.

To date I have reliable sources of carbohydrates and amino acids, but fatty acids are another matter. I have never found a source of highly purified fatty acids and as far as I can tell not even the TPN formulas are made that way.

I don't have gastroparesis issues but while AFIAK it was never labeled that my mother would react that way to eating something wrong. I can easily picture her getting sick from TPN containing something she was sensitive to.

It's not something that would have been of much priority for the doctors to test--if you can't tolerate all of the ingredients there's no value to knowing you can tolerate some. As far as I can tell your survival time eating no fat is a lot less than your survival time not eating, period. (If you're not eating your body draws on fat stores, thus providing fat. If you're eating but no fat the body doesn't draw on fat stores and bad things happen.)

I logged into HN so I can reply to your post. Thank you so so much for sharing. I can relate to your story in so many ways.

Thank you my friend. And I'm very sorry that you can relate. It's a tough thing, to say the least.

I am sorry to hear that. Loosing a loved before a really old age is just too early.

Thanks for sharing!

And yes, dying in peace at home like that is the best way to go if you ask me.

Thanks for sharing your personal story, and sorry for your loss. It's hard to imagine what it is to lose someone you love so early in life.

I am, however, glad that the end was the way you wanted it. From your comments, it's clear that it could have been much worse.

One nitpick: I am not sure what "the green paper on the wall said so" really means. Not a native English speaker.

The green paper on the wall was a Do Not Resuscitate order that was legally binding.

Thanks for clarifying.

Man, so sorry to hear what you went through, but your comment carries a lot of weight and meaning. Thanks for recounting this for us, even though it must have been painful. Your wife sounds like a true champion.

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