5 ms·

That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I

by jemmyw 3y ago

That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I couldn't say for sure.

dghughes 3y ago
My Dad had IPF a lung disease and struggled near the end mainly due to isolation at home. My Mom and myself were there but he missed his social outings like fishing and bargain hunting. Even struggling with his oxygen generator he fished struggling through mud and getting waders off and on. He was great until blood clots caused more issues like taking morphine to calm smooth muscle to help him breathe. Morphine just that tiny pill caused terrible constipation (opioids are terrible). My point being Dad would take anything just to feel even slightly better it meant he was still here. Death is terrifying and as long as you can limp along whatever makes it better is something people want. Really at that point you try to get to a point where you may just die in your sleep not knowing you did.
- rokkitmensch 3y ago
  The "death is terrifying" social malady does have some FDA-unsanctioned treatments you might consider. Check in with your network's Elusinian priests for the traditional cautions.
  - dghughes 3y ago
    Not sure what a network in medical context is but here in Canada there is the option of medical assistance in dying (MAID). Dad considered it but as a Catholic and just as a choice by anyone it was even more terrifying than just a natural death. You have to make the active choice and I think that is what scared him. Plus at the time I wasn't really seeing the anxiety he had he was good at masking it. He died in palliative care with assistance for any pain which was more mental than physical.
- freedomben 3y ago
  > opioids are terrible Why would you say something like this, especially given your dad's situation? yes they can cause constipation, but without opioids the pain would be much, much worse. To me it's a no-brainer, and nobody is forcing you to take opioids if you would rather the pain. I think opioids are a wonderful gift of nature to us and I'm immensely glad we have them. It terrifies me to think that we are so demonizing them now that they are withholding them from people who need them, and telling them to "take extra stength tylenol" instead. It's barbaric and cruel.
  - alach11 3y ago
    To me it seems pretty clear that the parent is saying "opioid [side effects] are terrible" after seeing how much suffering they caused their father.
  - dghughes 3y ago
    Sure if you take it out of context. >Morphine just that tiny pill caused terrible constipation (opioids are terrible)
    - freedomben 3y ago
      Fair enough, FWIW I wasn't trying to take it out of context. It seemed to me like a separate thread of thought being in the parens, but that's purely interpretive on my part. IMHO it would have been more clear to me your intention if you had said "(opioids are terrible for that)" or something similar. But that said I'm much too sensitive about the attacks on opiods because it's very much in the zeitgeist right now, and that would make me prone to defensiveness.
Aloha 3y ago
I understand the existential fear of the eternal dirt nap - but I dont care how much my loved one will miss me - because the quality of those last memories will be poor - and eternally painful to them, and will color the memories of me from the good times. Because of that, I would rather trade those moments of watching me die in the most agonizing, painful way imaginable, for the better memories - the times before I got sick. I watched my grandmother die, of cancer - there is nothing, literally nothing - that would allow me to put someone else thru that - at least not without their full consent, and making sure they knew of what was to come.
- stephen_g 3y ago
  You never know how people will going to respond - on the other hand, if there was some chance for five year or whatever survival, the people you're closest to might never forgive you for not trying if you refuse treatment... You'd hope not, but you never know. Then there's the problem that some have a few of the people closest to them in one camp, fully accepting, and some in the other camp, which can be terrible (I've seen it especially with people I know where it's their parent who was dying, with different siblings going either way).
  - ifdefdebug 3y ago
    One of my nearest avoided the pain of dying from cancer and years of painful treatment simply by suiciding. It was hard to accept her choice not to stay with us for few more years, denying our care. But of course I forgave her. We all forgave her. Edit: better said, we had no business forgiving her or not, that would be the worst forms of entitlement I could imagine. What I mean is that we still love her, no hard feelings.
  - refurb 3y ago
    You never know how people will going to respond That’s the thing. You might read “drug extends median overall survival by 3 months”. Big deal right? Well that’s the median. In reality it looks more like: - 5% see a complete response (cure) - 40% see a partial response - 55% see no response And of those 40% who see a partial response the median is 3 months but the range is 1 to 29 months. So now do you do it? 1 in 20 chance of a cure and 1 in 20 chance of two more years of life and a 1 in 10 chance of 1 more year of life.
pmarreck 3y ago
I have to say, the impression I get is that she loves her partner far more than the mother of my son and I love each other, but perhaps even this is a double-edged sword

by jemmyw 3y ago

That's a tragic story regardless of the medical hope. I don't think I would want to trade that level of discomfort for a little more time with my partner, but I couldn't say for sure.

dghughes 3y ago

My Dad had IPF a lung disease and struggled near the end mainly due to isolation at home. My Mom and myself were there but he missed his social outings like fishing and bargain hunting. Even struggling with his oxygen generator he fished struggling through mud and getting waders off and on. He was great until blood clots caused more issues like taking morphine to calm smooth muscle to help him breathe. Morphine just that tiny pill caused terrible constipation (opioids are terrible). My point being Dad would take anything just to feel even slightly better it meant he was still here. Death is terrifying and as long as you can limp along whatever makes it better is something people want. Really at that point you try to get to a point where you may just die in your sleep not knowing you did.

rokkitmensch 3y ago
The "death is terrifying" social malady does have some FDA-unsanctioned treatments you might consider. Check in with your network's Elusinian priests for the traditional cautions.
- dghughes 3y ago
  Not sure what a network in medical context is but here in Canada there is the option of medical assistance in dying (MAID). Dad considered it but as a Catholic and just as a choice by anyone it was even more terrifying than just a natural death. You have to make the active choice and I think that is what scared him. Plus at the time I wasn't really seeing the anxiety he had he was good at masking it. He died in palliative care with assistance for any pain which was more mental than physical.
freedomben 3y ago
> opioids are terrible Why would you say something like this, especially given your dad's situation? yes they can cause constipation, but without opioids the pain would be much, much worse. To me it's a no-brainer, and nobody is forcing you to take opioids if you would rather the pain. I think opioids are a wonderful gift of nature to us and I'm immensely glad we have them. It terrifies me to think that we are so demonizing them now that they are withholding them from people who need them, and telling them to "take extra stength tylenol" instead. It's barbaric and cruel.
- alach11 3y ago
  To me it seems pretty clear that the parent is saying "opioid [side effects] are terrible" after seeing how much suffering they caused their father.
- dghughes 3y ago
  Sure if you take it out of context. >Morphine just that tiny pill caused terrible constipation (opioids are terrible)
  - freedomben 3y ago
    Fair enough, FWIW I wasn't trying to take it out of context. It seemed to me like a separate thread of thought being in the parens, but that's purely interpretive on my part. IMHO it would have been more clear to me your intention if you had said "(opioids are terrible for that)" or something similar. But that said I'm much too sensitive about the attacks on opiods because it's very much in the zeitgeist right now, and that would make me prone to defensiveness.

Aloha 3y ago

I understand the existential fear of the eternal dirt nap - but I dont care how much my loved one will miss me - because the quality of those last memories will be poor - and eternally painful to them, and will color the memories of me from the good times. Because of that, I would rather trade those moments of watching me die in the most agonizing, painful way imaginable, for the better memories - the times before I got sick. I watched my grandmother die, of cancer - there is nothing, literally nothing - that would allow me to put someone else thru that - at least not without their full consent, and making sure they knew of what was to come.

stephen_g 3y ago
You never know how people will going to respond - on the other hand, if there was some chance for five year or whatever survival, the people you're closest to might never forgive you for not trying if you refuse treatment... You'd hope not, but you never know. Then there's the problem that some have a few of the people closest to them in one camp, fully accepting, and some in the other camp, which can be terrible (I've seen it especially with people I know where it's their parent who was dying, with different siblings going either way).
- ifdefdebug 3y ago
  One of my nearest avoided the pain of dying from cancer and years of painful treatment simply by suiciding. It was hard to accept her choice not to stay with us for few more years, denying our care. But of course I forgave her. We all forgave her. Edit: better said, we had no business forgiving her or not, that would be the worst forms of entitlement I could imagine. What I mean is that we still love her, no hard feelings.
- refurb 3y ago
  You never know how people will going to respond That’s the thing. You might read “drug extends median overall survival by 3 months”. Big deal right? Well that’s the median. In reality it looks more like: - 5% see a complete response (cure) - 40% see a partial response - 55% see no response And of those 40% who see a partial response the median is 3 months but the range is 1 to 29 months. So now do you do it? 1 in 20 chance of a cure and 1 in 20 chance of two more years of life and a 1 in 10 chance of 1 more year of life.

pmarreck 3y ago

I have to say, the impression I get is that she loves her partner far more than the mother of my son and I love each other, but perhaps even this is a double-edged sword