Jake Seliger has died

This is a complicated subject.

Because those rules are in place for reasons. And some of those reasons are to prevent drug companies from turning the poor into lab rats with no regard to their safety. And I guarantee you, you let "terminal" patients skirt rules, there will be a hell of a lot more "terminal" patients.

And I'm sure there are some non-regulation reasons to limit various therapies. They are trying to see if thing X can help. And if thing X only helps when combined with thing Y, you don't exactly get that information when focusing on thing X. Or the worse scenarios of thing Y making thing X ineffective or harmful.

This was written from a very emotional place, and understandably so. But that state means they are not exactly in a position to consider all the reasons. And it must be frustrating as hell to have tried 40 things that didn't work to only be denied the 41st because you tried too many other things. Especially if that 41st thing turns out to be something that works.

But I don't think the answer is let terminal patients take whatever they feel like.

I've experienced this from both sides. First with my father who was dying of cancer and was informed that while some promising treatments were in trials, he was not eligible. Balancing potential harm from unapproved drugs vs. certain death within 12 months feels like an easy task.

On the other side, my wife worked for a mid-sized pharma in the past. After several rounds of trials that each cost tens of millions of dollars, the FDA couldn't be convinced to approve the drug, despite hearings full of people who were either alive because the drug saved their lives or were hoping to have it approved for future use. After a couple more trials, the company ended up cutting losses and moving on to something else. Again, it feels like there should be some pathway here. Such a drug shouldn't be the first option if others are available, but if there's nothing else or other treatments haven't worked, what's the real harm in letting someone who's going to die anyway give it a shot.

May Jake rest in peace and may his memory be a blessing to his wife and daughter.

Their views on clinical trials were understandable given the circumstances. Those regulations were written in blood, miscarriage/birth defects, autoimmune conditions, genetic damage, and other horrors. This is a complicated ethical topic because clinical trials can harm patients and families of patients as much as they can help, and sometimes many years after the fact of the trial. It's not an appropriate discussion in a memorial post.

Thanks - it’s so helpful for them to have documented this for us to understand a very complex and opaque process. All while they were under extreme stress.

After reading "A Sister’s Eulogy for Steve Jobs", I felt Steve Jobs was finally happy with the way he lived life.

About 160,000 people die each day on this planet. It’s probably safe to assume that a good number of them are facing it with grace and clarity. The fact that many aren’t able to, for one reason or another, is maybe more heart-breaking, in a way.

I just relatively recently found his posts through HN. Even though I've only read something like 5-8 posts, I quickly became "attached", for lack of a better word, as I truly enjoyed the writing and openness. It brought me closer to that kind of situation, and the people in it, than I've (yet) ever been. I wish them all the best.

I can't remember where I read this, but it's always stuck with me:

    "Healthy is merely the slowest form of dying"

As the romantic partner of someone going through a degenerative disorder and as someone who watched my grandmother be consumed by dementia I can say that it's something most people develop over time instead of being born good at.

If a hang nail is bad enough to make you withdraw then that means you don't have a lot of experience of getting sick to the point where you had to push through as it hasn't happened a lot. Over the course of the 14 years I've had with my partner (started year 15 last month!) I've seen how she's had to adapt to remain involved and communicative - and a lot of days, that's a struggle for her that she puts herself through to stay connected to the people she loves.

tl;dr: It's an adaptation, and I'm glad that you've not had to build that adaptation.

If you look at the disease progression and his blogging history, it was a few months before he did open up about the situation.

(He may have discussed it earlier on HN, I haven't gone through his history to check on this.)

Once he began, however, he continued to the bitter end. And yes that is commendable.

He was an active HN user and a writer, he had a very active blog for many years, and he and his wife had been documenting their struggles during his disease; some of those articles were voted high here and had a lot of discussion around them. So in the microcosm of HN, it's relevant news.

RIP Jake.

Based on his LinkedIn profile: a writer, editor and researcher

https://www.linkedin.com/in/jake-seliger-03363819

+1

Yes. Email mods for any such requests.

<https://news.ycombinator.com/item?id=41203566>

Thanks for the link.

Bizarrely, the post on Marginal Revolution links to a post from 5 days ago, and it's easy to confirm that Jake was still alive when that post was published. (And, apparently, for almost a week afterwards.) The gofundme appears to be the only source that states he's died, and the MR report doesn't even mention it. (Other than to include a link to it in a quote from someone else.)

His brother also posted a comment, https://jakeseliger.com/2024/08/04/starting-hospice-the-end/... , about his brother's death - slightly different wording than the GoFundMe update.

Yes I remember the shock to hear that The Hermit, who kinda run The Register forums, died on the same day I had a chat with him. He quietly messaged me to give me some advice that was spot on. I had no idea and there was no hint that he was at the tail end of a protracted illness. They closed the forums and the website continued to change and be less of a community after that.

I think thats why cancer is such a vicious illness to have a loved one experience. Its a long drawn-out suffering, with an inevitability at the end of it. The body shuts down gradually as the cancer wins out. For my sister it was the same with 'good days' vs 'bad days'. At first bad days were the minority and over time the ratio changed.

Niklaus Wirth didn't get one

Much as I followed Jake’s story I don’t think it fits. Though I would be for it.

Further related:

How to let go: Jake's life ends as his daughter's begins

https://news.ycombinator.com/item?id=41174621

I believe he briefly talked about that in a post. I think he gave all the account info to his wife.

Indeed. I had never even heard of Jake before the post a few days ago about him going into hospice, so I had no personal attachment to the guy. But even so, reading about what he and his loved ones went through struck me as brutally unfair. Nobody should have to suffer (or watch someone they love suffer) like he did. Not just the disease itself but the extreme measures he had to go through just to try to keep it at bay. May he rest in peace.

Email such suggestions to mods at hn@ycombinator.com.

"@dang is a no-op": <https://news.ycombinator.com/item?id=36526450>

(Edit: I've emailed the suggestion, and we now have a black bar.)