I Lied When I Said We Did Everything We Could • Hacker News Board

Re: I Lied When I Said We Did Everything We Could

#161

Post by lmkg » Sun, Apr 07, 2019, 9:58 PM UTC

nlh wrote: post #142

I lost my dad recently (he was 84 and lived a wonderful and healthy life, which I consider a huge win for him). He had a terribly bad stroke that left him very much alive, but without the ability to speak, read, or write. He was a professional book reviewer and writer for much of his life, and continued to read, write, and think with voracity up until the minute before his stroke (he was setting up his Series 4 Apple…

I want to thank you for sharing your story, and also want to point out what I believe to be the most important point: Be clear with your loved ones what each of you considers "life worth living." Communication is paramount, and doing it ahead of time is also paramount because various situations mean it can't be done in the moment.

The goal and ideal scenario is that when circumstances require it, your loved ones do not feel that they are the ones making a decision. They should feel that they are carrying out the decision that you already made for them, with minimal interpretation on your part.

I was in a similar situation with my mother, and without going into too much detail, it was a significant burden taken off of me that she had made it very clear (both in person over the years, and through legal documents) what her wishes were. It is honestly something that I'm very thankful that she did, and recommend to others, especially those facing eminent medical issues.

Re: I Lied When I Said We Did Everything We Could

#162

Post by Pxtl » Sun, Apr 07, 2019, 9:58 PM UTC

cableshaft wrote: post #154

Pxtl wrote: post #49

I don't have asthma. My doctor says I have something milder than asthma. I have a puffer, and if you put me in the same room as a rabbit or guinea pig I will be struggling to breathe in about 20 minutes. I've lied awake at night coughing and hearing the accordion-like chorus of my wheezing windpipe. But it's not asthma. It has, however, made me very aware of what it feels like when lungs are not working well. Nothing…

You probably do have asthma. I'm a lifelong asthmatic and what you're describing is me on a rare bad day (it didn't used to be as rare as a kid, but is more rare for me in adulthood). You should probably get a second opinion, and an inhaler, peak flow meter, and a nebulizer as soon as you can. I got worried about life expectancy for asthmatics recently, and it seems like, generally speaking, as long as it's well trea…

My attacks are very rare - basically only brought on by extreme spring cleaning without a dust mask (dust allergies), and I have a corticosteroid inhaler that I take through allergy season.

Either way, I'll have another conversation with my doctor. My understanding was that asthma was generally a lifelong thing - my breathing was fine until I was around 30.

Re: I Lied When I Said We Did Everything We Could

#163

Post by mikecsh » Sun, Apr 07, 2019, 9:59 PM UTC

epmaybe wrote: post #88

fencepost wrote: post #76

"Everything we could" [and more than we should] I can't help but wonder if there was anyone with medical training acting as a patient advocate in this and similar situations.

Doctors can undergo special training in 'palliative care'. These docs have a pretty broad spectrum in terms of when they become involved, but from my own experience they've been pretty good at being patient/family advocates to primary care teams. They should ideally get involved at the beginning of any chronic illness, to discuss goals of care regularly, and provide patients and families with resources for end of lif…

Palliative care is an incredible specialty. Something I wish more patients understood is that palliative care is not just end of life care. Their remit is the alleviation of symptoms and pain at any stage of a life limiting illness. In the UK many people consider palliative care to be synonymous with end of life care for cancer patients and are unwilling to be referred to them. This can lead to unnecessary suffering. Perhaps a re-brand is in order.. :/

Re: I Lied When I Said We Did Everything We Could

#164

Post by pygy_ » Sun, Apr 07, 2019, 10:03 PM UTC

diminoten wrote: post #40

I want to go out as a result of a series of violent mistakes trying to save my life. Why would anyone want anything else? Peaceful death is basically suicide. Why do doctors continually perpetuate this notion that slipping softly into death (palliative care, hospice) is preferable to continually trying to avoid it by way of riskier and riskier attempts at treating the root cause? At the very least, we could be honest…

Everyone has a threshold regarding the amount of suffering they are willing to endure rather than dying. Yours (and your grandfather's, per your other comment) may be high, but so isn't everyone else's.

Suicide and euthanasia are valid options in some situations, which are up to each individual to evaluate for themselves.

The doctor in the article has been confronted to the selfish side of love too many times. People want their family members to be kept alive because losing them would make them sad. Somehow more sad than seeing them suffer and slowly die anyways.

Re: I Lied When I Said We Did Everything We Could

#165

Post by [deleted] » Sun, Apr 07, 2019, 10:05 PM UTC

bellerose wrote: post #12

This article reinforces my view even more. We as a society needs to allow people to end their life in a medical environment and only if they're capable of making the decision on their own in a rational manner. I've witnessed horrible situations where the life is not going to improve and is intolerable for the victim who wants an exit even if it means death. Why do we allow our own selfish desires to have these people…

[deleted]

Re: I Lied When I Said We Did Everything We Could

#166

Post by throwaway180118 » Sun, Apr 07, 2019, 10:06 PM UTC

DoreenMichele wrote: post #36

I have an incurable condition and spent about 3.5 months bedridden before finally getting a proper diagnosis. My condition has a significant respiratory component. While bedridden, I hallucinated wordless conversations with the Grim Reaper. One day, in the landscape of my mind, he rode up to me on a black steed, leaned down and peered into my face, then swirled around and rode off. I ran after him screaming "Don't le…

What's the name of this condition?

Re: I Lied When I Said We Did Everything We Could

#167

Post by Invictus0 » Sun, Apr 07, 2019, 10:11 PM UTC

I wish the author would have done more to explain the medical terms. Presumably, the audience is not people who know what sarcoidosis is.

Re: I Lied When I Said We Did Everything We Could

#168

Post by chmod775 » Sun, Apr 07, 2019, 10:12 PM UTC

diminoten wrote: post #141

pdonis wrote: post #140

Earlier quoted context omitted.

If you call something someone else says a lie, that's not a statement of opinion. You're saying they said something false. That's a factual matter.

An opinion can be false/wrong/a lie.

Something can't be an opinion and a lie by definition.

Lying is consciously uttering something you belive to be untrue. It can't be your opinion at the same time.

So unless you're planning to insult the people you are talking to by calling them dishonest, you should cease this way of discussing the topic.

It's obvious you care greatly about this matter and tempers can understandably get heated, but people calling each other liars rarely have productive discussions that leave all parties wiser.

Re: I Lied When I Said We Did Everything We Could

#169

Post by aplummer » Sun, Apr 07, 2019, 10:13 PM UTC

throwaway180118 wrote: post #166

DoreenMichele wrote: post #36

I have an incurable condition and spent about 3.5 months bedridden before finally getting a proper diagnosis. My condition has a significant respiratory component. While bedridden, I hallucinated wordless conversations with the Grim Reaper. One day, in the landscape of my mind, he rode up to me on a black steed, leaned down and peered into my face, then swirled around and rode off. I ran after him screaming "Don't le…

What's the name of this condition?

Atypical cystic fibrosis based on the bio

Re: I Lied When I Said We Did Everything We Could

#170

Post by mikecsh » Sun, Apr 07, 2019, 10:14 PM UTC

diminoten wrote: post #40

I want to go out as a result of a series of violent mistakes trying to save my life. Why would anyone want anything else? Peaceful death is basically suicide. Why do doctors continually perpetuate this notion that slipping softly into death (palliative care, hospice) is preferable to continually trying to avoid it by way of riskier and riskier attempts at treating the root cause? At the very least, we could be honest…

I wonder whether you would have such strongly held opinions if you had more experience of medicine, disease, and end of life.