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I’ve been battling cancer last 2 years, but now only have a few days left

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Re: I’ve been battling cancer last 2 years, but now only have a few days left

#251

Post by Falkon1313 »

onphonenow wrote: post #120
bane wrote: post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

A big issue medical system side are basically absent family who only show up for end of life. A lot of folks threatening lawsuits etc. Few folks willing to pay much to make anything better - lots of asset transfer games. It’s usually but not always the most absent family members who get the most upset at those who are helping toilet someone etc. This has nothing to do with OPs point except there is frustration on bot…

People get upset because when they do take time off work, find someone to petsit/babysit/housesit, and clear out their life savings to travel back home, they expect to find their loved one being properly taken care of by the health care system. And what they find instead is often far from what they expected.

When I heard my mother had fallen down and was in a rehab center, I of course expected her to be being taken care of, healing up, and getting physical therapy. Instead she was emaciated and barely conscious, unable to talk, appeared to be dying, but no IVs or monitors or anything. I asked why she wasn't in the hospital and they wouldn't answer me. At all. Wouldn't tell me anything, despite that I had the Power Of Attorney signed by her in my hand.

It took 3 full days before someone showed up who had the authority to talk to me. Then I found out what had happened. She had indeed fallen and had been in the hospital but had been declining. Her tests had came back positive for cancer again. So she had signed out of the hospital and signed up for palliative/hospice care at the rehab place; DNR etc. It all made sense once it was finally explained. It matched with what we had talked about years before.

But for a few days there, you can bet I was upset. In truth, the nurses there were wonderful and were doing the best they could to make her comfortable as she died. I'm thankful for them.

But not only was it not at all what was expected (fell down and damaged her leg, now in rehabilitation), they also wouldn't explain at all. There's also the side effect that the family member may be a lot older and sicker than the visitor remembers and expected.

And there's also the communication factor at the family level. People find it hard to talk about that stuff to their family members, so they often don't. They might be hearing it for the first time from hospital or hospice personnel. If they can even get those people to talk to them.

I understand why it's tough for the nurses too, to see someone encountering that, and have to talk to them and refuse to tell them anything.

The whole way we handle situations like that is a mess, for everyone involved.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#252

Post by AdamJacobMuller »

robocat wrote: post #208
throwaway6734 wrote: post #197

Earlier quoted context omitted.

The problem is cost. You're a good grandson for fighting for your grandpa, but there's no way we can afford the level of care you're demanding for every person close to end of life. It's inherently a futile battle.

> but there's no way we can afford the level of care you're demanding for every person close to end of life You are referencing a pernicious myth - a classic selection bias. For the majority of illnesses we don’t know whether someone is near the end of their life or not. We all “know” that people tend to have expensive care just before they die, but the selection bias occurs because we ignore the counterfactual where…

> we don’t know whether someone is near the end of their life or not

Sometimes know, but, admitting it is harder than we want to believe.

I can pull up statistics on a foot ulcer in a geriatric patient and point out that it usually (>50%) leads to amputation and that following an amputation most patients don't live a year and get called an asshole. I realized fairly quickly that the right course was to fight to make the next 12 months - 2 years "as good as possible." Organizing care and finances (dying is expensive).

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#253

Post by AdamJacobMuller »

bane wrote: post #247
AdamJacobMuller wrote: post #192

Earlier quoted context omitted.

I went through this with my then 94-year-old grandfather a couple of years ago. I ultimately came away from the situation realizing that things only got done when you actively threaten people and force them take action. Doctor doesn't want to properly follow up on a stage-iv foot ulcer and home wound care misses scheduled appointments? Ok, we're going to the ER and telling them that the doctor doesn't respond to his…

You experience nearly mirrors mine with the exception of age and the circumstances of care. But the need to exhaustively advocate for even basic care was, to be honest, harder than losing my father in the end. It's painful to say, but after he died the relief my family felt from not having to fight every "care provider" constantly for every single minor thing was palpable. You have a follow-on comment about your opti…

> It's painful to say, but after he died the relief my family felt from not having to fight every "care provider" constantly for every single minor thing was palpable.

It's awful to even think about it, let alone articulate it, but, that year was terribly difficult on me and even worse for my mother. My grandfather was a proud man and having people need to help him with every aspect of daily living (I'll leave the details to what I suspect is not your imagination) was undignified. By the time he passed it was obvious there was no quality of life left and death was a mercy. It doesn't have to only be a mercy for the patient.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#254

Post by justinclift »

jacurtis wrote: post #218
burritas wrote: post #113

Earlier quoted context omitted.

I'd rather not go into personal detail but I share a similar experience. The thing that really drove it home for me was when I got back home and was telling my own doctor about my experience dealing with family in the medical system and she said I was mistaken or there was a misunderstanding because that kind of thing doesn't happen. I asked why she was siding with a doctor she'd never met before instead of listening…

I'll share another story as an example. Late last year I started having trouble swallowing. It started as a discomfort, and eventually turned into trouble breathing and inability to eat solids. I went from perfectly healthy (literally ran a triathalon two months before this, and a marathon a few months before that) to unable to eat solids and bedridden within ~3 weeks. I visited the ER a total of 5 times during those…

Out of curiosity, have you spoken with that idiot primary care physician since, to let them know how you were cured? ... and to do the whole "fucking told you so!" thing? :)

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#256

Post by robocat »

oneoff786 wrote: post #224
robocat wrote: post #208

Earlier quoted context omitted.

> but there's no way we can afford the level of care you're demanding for every person close to end of life You are referencing a pernicious myth - a classic selection bias. For the majority of illnesses we don’t know whether someone is near the end of their life or not. We all “know” that people tend to have expensive care just before they die, but the selection bias occurs because we ignore the counterfactual where…

I feel you’re wrong on two directions. Sure, most people who die weren’t obviously on end of life. But those people tend not to be the ones with high end of life costs. The high cost is due to their circumstances, not the label. Second, the folks we are identifying as end of life tend to have a pretty good true positive : false positive rate. So if you’re in that bucket, you probably ought to be there.

My opinions don’t matter. Argue against the paper cited in the article “Predictive modeling of U.S. health care spending in late life” https://pubmed.ncbi.nlm.nih.gov/29954980/ Abstract:

  That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste. But this interpretation presumes knowledge of who will die and when. Here we analyze how spending is distributed by predicted mortality, based on a machine-learning model of annual mortality risk built using Medicare claims. Death is highly unpredictable. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%. The simple fact that we spend more on the sick-both on those who recover and those who die-accounts for 30 to 50% of the concentration of spending on the dead. Our results suggest that spending on the ex post dead does not necessarily mean that we spend on the ex ante "hopeless."

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#257

Post by greedo »

bane wrote: post #104

Almost exactly 18 months ago, my then 87 year old father, after feeling unwell and having some fluid problems with his lungs was diagnosed with stage-4 lung cancer. He turned down treatment and died at home a couple days before Christmas last year. I've come away from the experience very unhappy with the medical system. There's a long list, things that in any other industry would be prosecuted. The medical and hospic…

Sorry for your loss. I too lost my dad to lung cancer three years ago. He died right after Thanksgiving at 87 also. My stepdad died in December, so the holidays kind of suck for me. Hope you find peace.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#258

Post by rag_ksh »

justrudd wrote: post #210

This year, during a routine physical, my general practitioner felt some “lumps” in my throat. He wasn’t worried but wanted me to get a second opinion on them. two rounds of chemo and two five week five day a week rounds of radiation later, I no longer have the tumors in my throat. I was lucky. They got detected early and hadn’t metastasized. But holy hell was radiation treatment terrible. When I had my first round of…

>But all through the pain and the uncertainty, the thing that affected me the most was - I really learned who, in my social circle, I could count on. Made me realize that most of my social circle is acquaintances not friends. Not loved ones.

The First time you experience this is extremely painful and disorienting. Only advantage being you come out way stronger on the other side.

I hope things are better for you now and hope and pray nothing but the best comes your way hereafter. Have a good one brother.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#259

Post by onphonenow »

Falkon1313 wrote: post #251
onphonenow wrote: post #120

Earlier quoted context omitted.

A big issue medical system side are basically absent family who only show up for end of life. A lot of folks threatening lawsuits etc. Few folks willing to pay much to make anything better - lots of asset transfer games. It’s usually but not always the most absent family members who get the most upset at those who are helping toilet someone etc. This has nothing to do with OPs point except there is frustration on bot…

People get upset because when they do take time off work, find someone to petsit/babysit/housesit, and clear out their life savings to travel back home, they expect to find their loved one being properly taken care of by the health care system. And what they find instead is often far from what they expected. When I heard my mother had fallen down and was in a rehab center, I of course expected her to be being taken c…

And folks in the system may note that if folks lived close to or with their elderly parents many issues could be dealt with more easily.

You had authority (poa) but may have been seen as abdicating responsibility.

Ideas for folks who want to be active in parents lives.

Try to live close by. Free childcare when they are healthy. Even just weekly visits in assisted living w kids occasionally is game changing for parents quality of life.

Go big early on accessibility at home. Grab bars, walk in showers , shower bench etc etc . They will get used eventually.

Same with in home support. Try to get a relationship going w someone or agency early while parents have agency. One day a week, pay for something pt even etc. Can take going through a few to find a fit - some will be horrible and just after discharge not a great time to be sorting this all out. Just being in system for support can be a big win on things like hospital discharge.

Lots of challenges in all of this, but societal factors (living far away, work life balance etc) are a part of this, not just medical system.

Re: I’ve been battling cancer last 2 years, but now only have a few days left

#260

Post by oneoff786 »

robocat wrote: post #256
oneoff786 wrote: post #224

Earlier quoted context omitted.

I feel you’re wrong on two directions. Sure, most people who die weren’t obviously on end of life. But those people tend not to be the ones with high end of life costs. The high cost is due to their circumstances, not the label. Second, the folks we are identifying as end of life tend to have a pretty good true positive : false positive rate. So if you’re in that bucket, you probably ought to be there.

My opinions don’t matter. Argue against the paper cited in the article “Predictive modeling of U.S. health care spending in late life” https://pubmed.ncbi.nlm.nih.gov/29954980/ Abstract: That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste. But this interpretation presumes knowledge of who will die and when. Here we analyze how spending is distrib…

> That one-quarter of Medicare spending in the United States occurs in the last year of life is commonly interpreted as waste.

This is the issue this paragraph is dedicated to refuting. But this thread is not about this issue. So it’s largely just an irrelevant passage. However;

> Here we analyze how spending is distributed by predicted mortality, based on a machine-learning model of annual mortality risk built using Medicare claims. Death is highly unpredictable. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%.

This quote is dumb. As a data scientist I give it an F. Less than 5% of spending is accounted for by individuals with predicted mortality above 50%? Ok but what proportion of individuals is that? Is it 10% in which case they’re underrepresented? 5% in which case they’re average? Or .1% in which case they’re pulling in 50x their share? If we pull the criteria down to 40% what happens? What share of people who died are above 50% in the model? It’s a quote that is basically impossible to make use of on its face but is being used to push a very specific narrative.

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