24 ms·

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 can

by bane 4y ago

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 hospice systems are as near to worthless as any amount of money can buy -- at most times an absolute farce. These were people who went out of their way to make things a little less worse, but they all worked on the periphery of the system: drivers, suppliers, and so on. Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. I miss my Dad.

fdhfdjkfhdkj 4y ago
burritas 4y ago
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 to her patient, which got her pretty flustered. I don't see her anymore.
- jacquesm 4y ago
  The one thing that every doctor should have happen to them is to go through the medical system as well for something non-trivial. That usually gives them a lot more perspective on the reality of being on the receiving side.
  - toomuchtodo 4y ago
    Some doctors have a more healthy relationship with death than others. https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die https://www.theguardian.com/society/2012/feb/08/how-doctors-...
  - speakfreely 4y ago
    I don't think they can have the same experience as they are "insiders" to the system. Doctors and their families don't wait for appointments for months, aren't the last ones checked by the nurses in the hospitals, and get a variety of preferential treatment that makes their experience completely removed from the reality that the average person experiences.
    - david-gpu 4y ago
      My father was a doctor. You are correct: as patients they get preferential treatment. As often do their immediate family members. It's something I'm ashamed about when I look back at my own childhood.
      - comfypotato 4y ago
        I grew up with a good friend with a surgeon for a father, and my friend is finishing his surgery residency now. I watched (with some envy, really) as my friend was able to navigate the process of becoming a doctor with ease. He was no smarter than any other hard-working student, but he had the system working for him to point him in the right direction at every step of the process. (How to allocate his time studying, what kinds of jobs to work, even which foreign language to choose.) I still wouldn’t be ashamed if I were him. He’s good people and is headed to work for the VA (with all its warts, at least it’s free for the patients). Blatant favoritism is obviously wrong in the treatment of doctors and their families. That’s not what I’m talking about (it’s disgusting). Them knowing how to use the convoluted system is different, though, and I don’t think it’s something of which you should be ashamed. Especially if you/they work to make it a better system. If the parent comments have made it to this response: I’m sorry for your loss. Watching my healthy grandfather fall apart and die during the peak of the pandemic was a wake up call for me regarding the sad state of our healthcare system.
        boppo1 4y ago
        Which foreign language?
- inamberclad 4y ago
  It's a common theme - doctors just don't listen to their patients at all.
  - deleted 4y ago
    [deleted]
- the_sleaze_ 4y ago
  My own father passed roughly a year ago as well, also at a particularly advanced age. I had a similar experience, where I became frustrated with the lack of what I perceived to be care. As in "give a shit", or even a desire to find an actual diagnosis. One doctor told me, as my father lay intubated a foot away, that [the Dr's] best gift he gave his own parents was to DNR them so they never spent a day in a nursing home. A year later I've realized that my father was 80 years old. We all have to die at some point. Your father was 87. I understand you're upset. It may be that there was more for the medical system to do, there may not have been. At what point does spending possibly millions of dollars to extend some one's life 1 year, 2 years stop becoming good and turns into actual harm? They have to go at some point. Even if it is someone else's fault.
  - benatkin 4y ago
    > It may be that there was more for the medical system to do, there may not have been. I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's not what the hospice is tasked with doing. When someone has a terminal illness and refuses treatment what they are supposed to do is provide care while their illnesses kill them. They are to provide needs so other things don't kill them, not kill them earlier or make their conditions worse with laziness or incompetence. One example of something cancer shouldn't cause is bedsores from not being moved out of bed periodically. From how bane wrote of it, it seems like they were very far from any reasonable standard of care, so it would be hard to say what specifically would have gone better with his father's physical and mental condition during his months after diagnosis. As far as bane's father's diagnosis, I think it's likely if the medical system had worked harder to diagnose him they could have.
    - zamalek 4y ago
      Agreed. I am a person who would want millions spent to save my life, but despite that I take further issue with all this: people who refuse treatment are forced into a hospice because they are not allowed to choose euthanasia. You either suffer through a shit medical system, or have a needlessly painful/uncomfortable death.
- jacurtis 4y ago
  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 3 weeks (having never visited the ER one time in my previous 35 years of life). Each time I was told to go home and rest. I received no care. I was unable to stay awake for more than a few hours and eventually became unable to talk and too weak to walk. I was unable to talk, eat, stay awake, and even drinking water was miserable. I lost 30 lbs in 1 month. I had to go on disability from my job (Site Reliability Engineering Manager). Life was so bad. Over the course of the next 10 months I visited a dozen different specialists. Most of them weren't even worth the copay. A lot of doctors are absolutely worthless. I did eventually build up a team of talented and caring doctors. But 80-90% of the doctors I saw had zero care of my wellness. I am 35 years old, 6 ft, 180 lbs. I am very healthy. I eat tons of veggies, i don't do drugs, I drink rarely (socially a few times a year). The specialists continued to rule out specific diseases within their respective line of specialty, but they kept suggesting I rule out more general stuff from my Primary Care Physician. But my primary care doctor would continue to shrug off suggestions I had and tests I requested. The fact that I had researched things on the internet would ensure that he wouldn't want to encourage it. He would shrug off symptoms telling me they were irrelevant or that I just had to deal with them or that its just part of me "getting older" (i'm only 35...). I had asked for basic tests like a metabolic panel or other broad tests to give us somewhere to look and he truly didn't care. He just wanted to send me to a different specialist and have them worry about me. After 10 months of this I found a new primary care physician. I explain my symptoms to him and he truly listened and cared for the first time since this whole thing started. He listened to my actual problems and the timeline of the events and within one visit he took a bunch of blood and sent off for a host of tests. Within a week of that visit I discovered I had severe Vitamin D deficiency and B12 deficiency. I took vitamin supplements for these two vitamins and within a week I was about 50% better. It took about a month and I was about 80% better and another month and I was 95% better. The cure to my disease was $20 worth of vitamins that you can buy at a corner market. I was on disability, I actually came close to dying a few times and racked up $150,000+ in medical procedures (luckily I have amazing insurance so it cost me my out of pocket max of $3,500). All of this for what was cured with vitamins and a simple blood test. A single visit from a caring doctor found this problem, but I suffered for a year because I couldn't find a doctor that cared enough to actually listen and take me seriously. The stickler is this. I wondered about a vitamin problem at the beginning and my original primary care physician told me specifically not to take a multi-vitamin because "it might make things worse". I had also explicitly requested a general vitamin and metabolic panel on my first visit to the emergency room and also on my first visit to the PCP, of which I was denied both times. I even specifically mentioned a vitamin B12 deficiency during my first visit with the PCP, but when he asked why I suspected it and I mentioned that I read about it on the internet and my symptoms matched up, he was determined to convince me that I was wrong and it couldn't be that. Not only did I effectively lose a year of my life and career and thousands of dollars. But I still might have some lingering permanent effects from this. Nothing like what I went through initially, but still lingering issues nonetheless. The lack of compassion or care in the medical community astounded me. I have been very healthy my whole life and haven't had to deal with a lot of doctors. I always looked up to them as intelligent and respectable people. But this experience really gave me a more cynical experience of them. I realize they are just shooting from the hip and guessing as much as anyone else. Yes they went to medical school and have that knowledge to fall back on, but they are still just guessing. They just want to get you out the door, just like when you have someone come into your office to talk about something. You want to make that person happy, but you also just want to get them to move on and stop bothering you. Most doctors have this same approach. You are a customer, and most doctors don't truly care about you more than that. They don't see you as a person with a life, who may actually die from these decisions you are making or make have serious repercussions (like taking disability off work or suffering daily). Yes, i'm American. So this is the American medical system I am talking about. But I doubt it's really that much different elsewhere in the world (minus the outrageous prices).
- tekknik 4y ago
  The interesting thing I find is with COVID vaccines. How many people were lambasted for not listening to their DR?
CalChris 4y ago
I won't agree about the American medical system but I'd say that our hospice system is pretty much Soylent Green.
- enraged_camel 4y ago
  The American medical system is an absolute travesty. To be fair to you though, this only really becomes obvious when one experiences functioning medical systems in other countries.
  - orangepurple 4y ago
    How else would health insurance executives, hospital executives, and doctors afford their third million dollar home? The system is working just fine for them.
    - zikduruqe 4y ago
      Except for me; they didn't get any yacht payments from me. When we had a medical disaster, I filed for bankruptcy once the bills came in, and this is with good insurance. It really didn't affect my credit score, and we bought a house and car 18 months afterwards. Sometimes bad things happen to good people, through no fault of their own. I mean, rich fat cats get debt forgiveness when things don't work out for them.
      - orangepurple 4y ago
        I'm guessing your assets were wiped out but you were able to qualify for house and car later due to cash flow. Anything I'm missing? Thanks for sharing btw
        zikduruqe 4y ago
        Nope. We just told the bank that we had a medical bankruptcy and they said "it happens all the time..." and proceeded with no issues.
onphonenow 4y ago
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 both sides , and folks living far from family and/or being heavily into the rat race may be a contributor as the med system try’s substituting for large tight knit family and social structures that have been diminished
- jasonhansel 4y ago
  As applied to medical decisions, this even has its own name--"Daughter from California" syndrome: https://en.wikipedia.org/wiki/Daughter_from_California_syndrome https://en.wikipedia.org/wiki/Daughter_from_California_syndr...
- Falkon1313 4y ago
  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.
jacquesm 4y ago
So many stories like yours. They are one of the reasons living in the United States never appealed to me. With Christmas coming up this must be a very hard time for you, hang in there.
- mythhouse 4y ago
  I've lived in India, UK and USA for atleast 5 years in each. I would take USA in a heartbeat if I can have good insurance You are getting cutting edge care in USA. For example, My father has prostate cancer and latest NCNN guidelines recommend 'triplet therapy' [1] at diagnosis and is the standard in USA. But in UK they you only get chemo and ADT via NHS. They also have major delays (years) in getting latest medical innovations, eg: Daraloutamide isn't available via NHS for PC so you are out of luck if you cannot tolerate the only available option there ( enzalutamide). I personally know family in UK who have Cardiovascular events on Enzalutamide but can't access Darolutamide because it isn't available via NHS. There are also a wider variety of clinical trail options in USA compared to UK when you run out of SOC options. you can check here https://clinicaltrials.gov/ https://clinicaltrials.gov/ to see which country has the most research going on when you get to that stage. I urge you to do major research your options because its literally life and death. Seek out experts who can make this decision for you based on available options. Imagine losing years of your life because you made a country decision based on generic internet comments :/ . 1. https://www.frontiersin.org/articles/10.3389/fphar.2022.955925/full https://www.frontiersin.org/articles/10.3389/fphar.2022.9559...
  - deleted 4y ago
    [deleted]
  - jacquesm 4y ago
    I'm in NL and absolutely not concerned about the quality of health care here or what it will cost. Insurance here is very good and reasonably affordable.
    - mythhouse 4y ago
      For sure. PC runs in my family and I have somewhat of A/B test due to this based on family members living in different parts of the world. I had family travel to india recently to get provenge ( after exhausting all other SOC options ) because NHS said its too expensive https://www.ajmc.com/view/nice-rejects-provenge-says-treatment-is-not-cost-effective https://www.ajmc.com/view/nice-rejects-provenge-says-treatme... It was apparently available under some clinical trial but that trial wasn't recruiting at that point.
agumonkey 4y ago
Sorry for you. And sadly it's not an uncommon experience. Lots of people leave cancer care with a sour taste due to way too many mishaps. And the recent era is not pretty (diminishing healthcare in lots of places .. saying that as a French, covid wiping a lot of professional out of the field). We can do a lot better, focus and resources must pour where it's important.
ethics13 4y ago
My experience of the hospice system is the opposite of yours. My dad was 73, passed away from cancer that took him way too soon as he was more active than people half his age. He swam, ran, worked out everyday. Was one of the most positive people in the world. The hospice people were absolute angels as to how they handled him and his last months. Truly the most compassionate people work in these places and it was good to have at least that in his dying days. I am sorry for your loss and the experience you've had with your dad.
- bane 4y ago
  Thanks, I appreciate it, and am happy to hear that your own experience was far more positive than our own. I take comfort that my father's wishes were to spend his final few months at home and die there. It took a herculean effort on behalf of all of us to pull it off, pulling 24 hour bedside shifts for months took a toll. But we all have zero regrets about it, and despite the grief, was a very beautiful way to honor and support him.
mythhouse 4y ago
> Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. We are about enter this system for my dad for end stage Prostate cancer. Wondering whats in store for us :|, curious to hear any specific we should watch out for.
- bane 4y ago
  I'm so sorry to hear it :( All I can really say is that in general, advocate advocate advocate. Don't take no for an answer, don't settle for "the policy", double-triple check in/out network providers and take control of the situation and above all, be polite. Yelling will cause them to shut down, but polite firmness will put you in command. There are often clever ways around seemingly insurmountable obstacles [1] It's easy to forget that doctors are simply a service provider and provide services you request or consent to. Treat them no different than a waiter, or an engineer, they have no magic, only training. Quality of care can vary wildly across doctors, nurses, and facilities. The system they work within is broken, and its broken what it means to "practice medicine". The only people who care about your father is your family, and they have to never forget that and tirelessly push that point of view. 1 - An anecdote: I temporarily became an on-call "IT technician" for a day to get around covid restrictions at one facility my father was having a hard time at. The staff couldn't do anything about it and honestly felt bad, then we all realized that employees could go anywhere, while family and guests could not. edit this response also mirrors my own, https://news.ycombinator.com/item?id=34044230 https://news.ycombinator.com/item?id=34044230
AdamJacobMuller 4y ago
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 service and home care didn't show up. Had to do that several times but eventually doctors and home care got tired of getting yelled at (by me and by whomever at the hospital system they reported too, because, ER staff was unhappy) that home care and doctors visits were much more regular. Sadly 94 with a foot ulcer only ends one way and in the hospital post-amputation doctors were deflecting responsibility for his ongoing care and basically leaving him on a post-op ward with minimal PT/OT and extremely limited interaction due to COVID restrictions. A JACO complaint resulted in a meeting at the hospital with about 16 doctors in attendance. I started the conversation by telling them "Your inaction is killing my grandfather and before we leave here today we will find a solution because I will not allow you to murder him". My aunt (who was there) described me as "a bit much" but within 24 hours he was moved home with appropriate support, multiple PT/OT daily, 24-hour home care, nursing visits, etc. Sadly 94 with an amputation only ends one way and within 6 months he reached a point where we knew the end was near. We enrolled in a home hospice program but the end came quickly. Hospice, despite promising 24/7 coverage and promising quick response times, failed in the end and despite repeated calls over his final day nobody showed up. Eventually, only threatening to call 911 (because we were desperate) and saying we would tell 911 that hospice care was non-responsive resulted in a nursing dispatch, but, it was too late. The American health care system seems to require one to stand up and scream sometimes to get help. Doctors, nurses, etc are individually great people but they all have their own myopic opinions of the situation which my grandfather was not the center of. Getting things done requires reorienting them and making them realize you will not settle and that medical opinion is both only an opinion but also only one part of a large equation. (Yes, perhaps, PT/OT techs in Dr X's experience are better in sub-acute rehab facility X, definitely they will do 3x daily instead of 2x daily, but being completely isolated (no family visits due to COVID) is a completely dominating concern and not even a medical one.) Every regret I have from that year is from not pushing people harder, everything I'm proud of is from when I did.
- 4y ago
tootie 4y ago
I'm not clear how that relates to the post or what exactly the medical people did wrong from your post? I have a had a few elderly relatives go through long bouts of treatment and they got good diagnoses and care all the way across. The worst was my grandmother's chemo was pharmaceutical and the pills were $2000 a dose and not covered by Medicare at the time.
- bane 4y ago
  I have a bunch of other comments in here that relate some of the story. It's honestly too much to give a daily play-by-play of six months of somebody's life. Suffice it to say I wouldn't accept the service-level we received at a fast food restaurant. But medical care is wildly variable in the U.S., even just changing a nurse, or going down the street to another facility can magically transform an episode of care from "the dumbest nonsense I've ever experienced" to "reasonable and compassionate".
TheBrokenRail 4y ago
I feel like I'm missing something, what did the medical system actually do wrong? I feel like I'm missing an intermediary paragraph talking about high fees or uncompassionate doctors or something similar.
- bane 4y ago
  It's longer than I care to really write, but I think this comment (not be myself) gets to the essence of my experience as well https://news.ycombinator.com/item?id=34044230 https://news.ycombinator.com/item?id=34044230 and an anecdote I don't care to rewrite https://news.ycombinator.com/item?id=34047842 https://news.ycombinator.com/item?id=34047842
hackerlight 4y ago
Why can't we have a non-scammy version of Theranos that detects cancer early? Why is this so hard?
greedo 4y ago
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.
- bane 4y ago
  Thanks, I appreciate it. The holidays kind of suck at the moment.
tekknik 4y ago
I miss my mother, and almost lost my dad to literally the same lung cancer. His was caused by welding. The thing is, we were poor and he was totally cured. Missing a portion of his lung, but cured. They even paid for him to change careers. From my perspective, the medical system saved my poor father.
kashunstva 4y ago
> f*ck the American medical system To call it a _system_ is generous because it implies a goal-oriented design where each component fits together intentionally. This in no way describes healthcare in the U.S. If you have unlimited time, money, access, and medical knowledge, you can find ways to put together what you need. But lack one or more of those elements, and good luck to you.
celene-II_thro 4y ago
My experience has led me to the conclusion hospice needs strong regulation & it can't happen soon enough. Trigger warning: my story is both sick & sad. When my Dad was on his deathbed at home with lung cancer my Mom was in charge of administering the morphine dropper on a schedule like she was shown to do by the hospice nurse. I was younger then, not dealing with it well so was self-medicating & was very out of it. No appropriate situational awareness at all. The next morning after he was dead I was cleaning up & thought it odd that his morphine bottle was still half full but didn't think much of it. His body didn't look quite right either but being the first dead body I'd ever seen how would I know something was off? Decades later I learned his hands wouldn't go together because when he had died he was pushing her off him with all his strength while she was suffocating him. So on top of not getting his morphine he had her probably on top of his distended belly with all that pain exceeding what was already unimaginable, suffocating him. Before my Mom died she asked me if he'd molested me & I was surprised. I told her no, of course not, & soon afterward she started mismanaging her diabetes just a bit more than usual. She died of a heart attack a few months later- presumably from the diabetes. Though I think it was a suicide after realizing what she had done to Dad.

by bane 4y ago

fdhfdjkfhdkj 4y ago

burritas 4y ago

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 to her patient, which got her pretty flustered. I don't see her anymore.

jacquesm 4y ago
The one thing that every doctor should have happen to them is to go through the medical system as well for something non-trivial. That usually gives them a lot more perspective on the reality of being on the receiving side.
- toomuchtodo 4y ago
  Some doctors have a more healthy relationship with death than others. https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.huffpost.com/entry/doctors-death_b_1500871 https://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die https://www.theguardian.com/society/2012/feb/08/how-doctors-...
- speakfreely 4y ago
  I don't think they can have the same experience as they are "insiders" to the system. Doctors and their families don't wait for appointments for months, aren't the last ones checked by the nurses in the hospitals, and get a variety of preferential treatment that makes their experience completely removed from the reality that the average person experiences.
  - david-gpu 4y ago
    My father was a doctor. You are correct: as patients they get preferential treatment. As often do their immediate family members. It's something I'm ashamed about when I look back at my own childhood.
    - comfypotato 4y ago
      I grew up with a good friend with a surgeon for a father, and my friend is finishing his surgery residency now. I watched (with some envy, really) as my friend was able to navigate the process of becoming a doctor with ease. He was no smarter than any other hard-working student, but he had the system working for him to point him in the right direction at every step of the process. (How to allocate his time studying, what kinds of jobs to work, even which foreign language to choose.) I still wouldn’t be ashamed if I were him. He’s good people and is headed to work for the VA (with all its warts, at least it’s free for the patients). Blatant favoritism is obviously wrong in the treatment of doctors and their families. That’s not what I’m talking about (it’s disgusting). Them knowing how to use the convoluted system is different, though, and I don’t think it’s something of which you should be ashamed. Especially if you/they work to make it a better system. If the parent comments have made it to this response: I’m sorry for your loss. Watching my healthy grandfather fall apart and die during the peak of the pandemic was a wake up call for me regarding the sad state of our healthcare system.
      - boppo1 4y ago
        Which foreign language?
inamberclad 4y ago
It's a common theme - doctors just don't listen to their patients at all.
- deleted 4y ago
  [deleted]
the_sleaze_ 4y ago
My own father passed roughly a year ago as well, also at a particularly advanced age. I had a similar experience, where I became frustrated with the lack of what I perceived to be care. As in "give a shit", or even a desire to find an actual diagnosis. One doctor told me, as my father lay intubated a foot away, that [the Dr's] best gift he gave his own parents was to DNR them so they never spent a day in a nursing home. A year later I've realized that my father was 80 years old. We all have to die at some point. Your father was 87. I understand you're upset. It may be that there was more for the medical system to do, there may not have been. At what point does spending possibly millions of dollars to extend some one's life 1 year, 2 years stop becoming good and turns into actual harm? They have to go at some point. Even if it is someone else's fault.
- benatkin 4y ago
  > It may be that there was more for the medical system to do, there may not have been. I think you're mistaken if you think bane's complaint goes away if it turns out they couldn't have saved him. For one thing, bane said his father refused treatment, but still had a complaint with the hospice. The complaint with the hospice probably wouldn't be that they didn't save him from succumbing to his illness because that's not what the hospice is tasked with doing. When someone has a terminal illness and refuses treatment what they are supposed to do is provide care while their illnesses kill them. They are to provide needs so other things don't kill them, not kill them earlier or make their conditions worse with laziness or incompetence. One example of something cancer shouldn't cause is bedsores from not being moved out of bed periodically. From how bane wrote of it, it seems like they were very far from any reasonable standard of care, so it would be hard to say what specifically would have gone better with his father's physical and mental condition during his months after diagnosis. As far as bane's father's diagnosis, I think it's likely if the medical system had worked harder to diagnose him they could have.
  - zamalek 4y ago
    Agreed. I am a person who would want millions spent to save my life, but despite that I take further issue with all this: people who refuse treatment are forced into a hospice because they are not allowed to choose euthanasia. You either suffer through a shit medical system, or have a needlessly painful/uncomfortable death.
jacurtis 4y ago
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 3 weeks (having never visited the ER one time in my previous 35 years of life). Each time I was told to go home and rest. I received no care. I was unable to stay awake for more than a few hours and eventually became unable to talk and too weak to walk. I was unable to talk, eat, stay awake, and even drinking water was miserable. I lost 30 lbs in 1 month. I had to go on disability from my job (Site Reliability Engineering Manager). Life was so bad. Over the course of the next 10 months I visited a dozen different specialists. Most of them weren't even worth the copay. A lot of doctors are absolutely worthless. I did eventually build up a team of talented and caring doctors. But 80-90% of the doctors I saw had zero care of my wellness. I am 35 years old, 6 ft, 180 lbs. I am very healthy. I eat tons of veggies, i don't do drugs, I drink rarely (socially a few times a year). The specialists continued to rule out specific diseases within their respective line of specialty, but they kept suggesting I rule out more general stuff from my Primary Care Physician. But my primary care doctor would continue to shrug off suggestions I had and tests I requested. The fact that I had researched things on the internet would ensure that he wouldn't want to encourage it. He would shrug off symptoms telling me they were irrelevant or that I just had to deal with them or that its just part of me "getting older" (i'm only 35...). I had asked for basic tests like a metabolic panel or other broad tests to give us somewhere to look and he truly didn't care. He just wanted to send me to a different specialist and have them worry about me. After 10 months of this I found a new primary care physician. I explain my symptoms to him and he truly listened and cared for the first time since this whole thing started. He listened to my actual problems and the timeline of the events and within one visit he took a bunch of blood and sent off for a host of tests. Within a week of that visit I discovered I had severe Vitamin D deficiency and B12 deficiency. I took vitamin supplements for these two vitamins and within a week I was about 50% better. It took about a month and I was about 80% better and another month and I was 95% better. The cure to my disease was $20 worth of vitamins that you can buy at a corner market. I was on disability, I actually came close to dying a few times and racked up $150,000+ in medical procedures (luckily I have amazing insurance so it cost me my out of pocket max of $3,500). All of this for what was cured with vitamins and a simple blood test. A single visit from a caring doctor found this problem, but I suffered for a year because I couldn't find a doctor that cared enough to actually listen and take me seriously. The stickler is this. I wondered about a vitamin problem at the beginning and my original primary care physician told me specifically not to take a multi-vitamin because "it might make things worse". I had also explicitly requested a general vitamin and metabolic panel on my first visit to the emergency room and also on my first visit to the PCP, of which I was denied both times. I even specifically mentioned a vitamin B12 deficiency during my first visit with the PCP, but when he asked why I suspected it and I mentioned that I read about it on the internet and my symptoms matched up, he was determined to convince me that I was wrong and it couldn't be that. Not only did I effectively lose a year of my life and career and thousands of dollars. But I still might have some lingering permanent effects from this. Nothing like what I went through initially, but still lingering issues nonetheless. The lack of compassion or care in the medical community astounded me. I have been very healthy my whole life and haven't had to deal with a lot of doctors. I always looked up to them as intelligent and respectable people. But this experience really gave me a more cynical experience of them. I realize they are just shooting from the hip and guessing as much as anyone else. Yes they went to medical school and have that knowledge to fall back on, but they are still just guessing. They just want to get you out the door, just like when you have someone come into your office to talk about something. You want to make that person happy, but you also just want to get them to move on and stop bothering you. Most doctors have this same approach. You are a customer, and most doctors don't truly care about you more than that. They don't see you as a person with a life, who may actually die from these decisions you are making or make have serious repercussions (like taking disability off work or suffering daily). Yes, i'm American. So this is the American medical system I am talking about. But I doubt it's really that much different elsewhere in the world (minus the outrageous prices).
tekknik 4y ago
The interesting thing I find is with COVID vaccines. How many people were lambasted for not listening to their DR?

CalChris 4y ago

I won't agree about the American medical system but I'd say that our hospice system is pretty much Soylent Green.

enraged_camel 4y ago
The American medical system is an absolute travesty. To be fair to you though, this only really becomes obvious when one experiences functioning medical systems in other countries.
- orangepurple 4y ago
  How else would health insurance executives, hospital executives, and doctors afford their third million dollar home? The system is working just fine for them.
  - zikduruqe 4y ago
    Except for me; they didn't get any yacht payments from me. When we had a medical disaster, I filed for bankruptcy once the bills came in, and this is with good insurance. It really didn't affect my credit score, and we bought a house and car 18 months afterwards. Sometimes bad things happen to good people, through no fault of their own. I mean, rich fat cats get debt forgiveness when things don't work out for them.
    - orangepurple 4y ago
      I'm guessing your assets were wiped out but you were able to qualify for house and car later due to cash flow. Anything I'm missing? Thanks for sharing btw
      - zikduruqe 4y ago
        Nope. We just told the bank that we had a medical bankruptcy and they said "it happens all the time..." and proceeded with no issues.

onphonenow 4y ago

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 both sides , and folks living far from family and/or being heavily into the rat race may be a contributor as the med system try’s substituting for large tight knit family and social structures that have been diminished

jasonhansel 4y ago
As applied to medical decisions, this even has its own name--"Daughter from California" syndrome: https://en.wikipedia.org/wiki/Daughter_from_California_syndrome https://en.wikipedia.org/wiki/Daughter_from_California_syndr...
Falkon1313 4y ago
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.

jacquesm 4y ago

So many stories like yours. They are one of the reasons living in the United States never appealed to me. With Christmas coming up this must be a very hard time for you, hang in there.

mythhouse 4y ago
I've lived in India, UK and USA for atleast 5 years in each. I would take USA in a heartbeat if I can have good insurance You are getting cutting edge care in USA. For example, My father has prostate cancer and latest NCNN guidelines recommend 'triplet therapy' [1] at diagnosis and is the standard in USA. But in UK they you only get chemo and ADT via NHS. They also have major delays (years) in getting latest medical innovations, eg: Daraloutamide isn't available via NHS for PC so you are out of luck if you cannot tolerate the only available option there ( enzalutamide). I personally know family in UK who have Cardiovascular events on Enzalutamide but can't access Darolutamide because it isn't available via NHS. There are also a wider variety of clinical trail options in USA compared to UK when you run out of SOC options. you can check here https://clinicaltrials.gov/ https://clinicaltrials.gov/ to see which country has the most research going on when you get to that stage. I urge you to do major research your options because its literally life and death. Seek out experts who can make this decision for you based on available options. Imagine losing years of your life because you made a country decision based on generic internet comments :/ . 1. https://www.frontiersin.org/articles/10.3389/fphar.2022.955925/full https://www.frontiersin.org/articles/10.3389/fphar.2022.9559...
- deleted 4y ago
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- jacquesm 4y ago
  I'm in NL and absolutely not concerned about the quality of health care here or what it will cost. Insurance here is very good and reasonably affordable.
  - mythhouse 4y ago
    For sure. PC runs in my family and I have somewhat of A/B test due to this based on family members living in different parts of the world. I had family travel to india recently to get provenge ( after exhausting all other SOC options ) because NHS said its too expensive https://www.ajmc.com/view/nice-rejects-provenge-says-treatment-is-not-cost-effective https://www.ajmc.com/view/nice-rejects-provenge-says-treatme... It was apparently available under some clinical trial but that trial wasn't recruiting at that point.

agumonkey 4y ago

Sorry for you. And sadly it's not an uncommon experience. Lots of people leave cancer care with a sour taste due to way too many mishaps. And the recent era is not pretty (diminishing healthcare in lots of places .. saying that as a French, covid wiping a lot of professional out of the field). We can do a lot better, focus and resources must pour where it's important.

ethics13 4y ago

My experience of the hospice system is the opposite of yours. My dad was 73, passed away from cancer that took him way too soon as he was more active than people half his age. He swam, ran, worked out everyday. Was one of the most positive people in the world. The hospice people were absolute angels as to how they handled him and his last months. Truly the most compassionate people work in these places and it was good to have at least that in his dying days. I am sorry for your loss and the experience you've had with your dad.

bane 4y ago
Thanks, I appreciate it, and am happy to hear that your own experience was far more positive than our own. I take comfort that my father's wishes were to spend his final few months at home and die there. It took a herculean effort on behalf of all of us to pull it off, pulling 24 hour bedside shifts for months took a toll. But we all have zero regrets about it, and despite the grief, was a very beautiful way to honor and support him.

mythhouse 4y ago

> Fuck cancer, but also fuck the American medical system, and anybody who's gotten in the way of making it more sane and compassionate. We are about enter this system for my dad for end stage Prostate cancer. Wondering whats in store for us :|, curious to hear any specific we should watch out for.

bane 4y ago
I'm so sorry to hear it :( All I can really say is that in general, advocate advocate advocate. Don't take no for an answer, don't settle for "the policy", double-triple check in/out network providers and take control of the situation and above all, be polite. Yelling will cause them to shut down, but polite firmness will put you in command. There are often clever ways around seemingly insurmountable obstacles [1] It's easy to forget that doctors are simply a service provider and provide services you request or consent to. Treat them no different than a waiter, or an engineer, they have no magic, only training. Quality of care can vary wildly across doctors, nurses, and facilities. The system they work within is broken, and its broken what it means to "practice medicine". The only people who care about your father is your family, and they have to never forget that and tirelessly push that point of view. 1 - An anecdote: I temporarily became an on-call "IT technician" for a day to get around covid restrictions at one facility my father was having a hard time at. The staff couldn't do anything about it and honestly felt bad, then we all realized that employees could go anywhere, while family and guests could not. edit this response also mirrors my own, https://news.ycombinator.com/item?id=34044230 https://news.ycombinator.com/item?id=34044230

AdamJacobMuller 4y ago

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 service and home care didn't show up. Had to do that several times but eventually doctors and home care got tired of getting yelled at (by me and by whomever at the hospital system they reported too, because, ER staff was unhappy) that home care and doctors visits were much more regular. Sadly 94 with a foot ulcer only ends one way and in the hospital post-amputation doctors were deflecting responsibility for his ongoing care and basically leaving him on a post-op ward with minimal PT/OT and extremely limited interaction due to COVID restrictions. A JACO complaint resulted in a meeting at the hospital with about 16 doctors in attendance. I started the conversation by telling them "Your inaction is killing my grandfather and before we leave here today we will find a solution because I will not allow you to murder him". My aunt (who was there) described me as "a bit much" but within 24 hours he was moved home with appropriate support, multiple PT/OT daily, 24-hour home care, nursing visits, etc. Sadly 94 with an amputation only ends one way and within 6 months he reached a point where we knew the end was near. We enrolled in a home hospice program but the end came quickly. Hospice, despite promising 24/7 coverage and promising quick response times, failed in the end and despite repeated calls over his final day nobody showed up. Eventually, only threatening to call 911 (because we were desperate) and saying we would tell 911 that hospice care was non-responsive resulted in a nursing dispatch, but, it was too late. The American health care system seems to require one to stand up and scream sometimes to get help. Doctors, nurses, etc are individually great people but they all have their own myopic opinions of the situation which my grandfather was not the center of. Getting things done requires reorienting them and making them realize you will not settle and that medical opinion is both only an opinion but also only one part of a large equation. (Yes, perhaps, PT/OT techs in Dr X's experience are better in sub-acute rehab facility X, definitely they will do 3x daily instead of 2x daily, but being completely isolated (no family visits due to COVID) is a completely dominating concern and not even a medical one.) Every regret I have from that year is from not pushing people harder, everything I'm proud of is from when I did.

4y ago

tootie 4y ago

I'm not clear how that relates to the post or what exactly the medical people did wrong from your post? I have a had a few elderly relatives go through long bouts of treatment and they got good diagnoses and care all the way across. The worst was my grandmother's chemo was pharmaceutical and the pills were $2000 a dose and not covered by Medicare at the time.

bane 4y ago
I have a bunch of other comments in here that relate some of the story. It's honestly too much to give a daily play-by-play of six months of somebody's life. Suffice it to say I wouldn't accept the service-level we received at a fast food restaurant. But medical care is wildly variable in the U.S., even just changing a nurse, or going down the street to another facility can magically transform an episode of care from "the dumbest nonsense I've ever experienced" to "reasonable and compassionate".

TheBrokenRail 4y ago

I feel like I'm missing something, what did the medical system actually do wrong? I feel like I'm missing an intermediary paragraph talking about high fees or uncompassionate doctors or something similar.

bane 4y ago
It's longer than I care to really write, but I think this comment (not be myself) gets to the essence of my experience as well https://news.ycombinator.com/item?id=34044230 https://news.ycombinator.com/item?id=34044230 and an anecdote I don't care to rewrite https://news.ycombinator.com/item?id=34047842 https://news.ycombinator.com/item?id=34047842

hackerlight 4y ago

Why can't we have a non-scammy version of Theranos that detects cancer early? Why is this so hard?

greedo 4y ago

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.

bane 4y ago
Thanks, I appreciate it. The holidays kind of suck at the moment.

tekknik 4y ago

I miss my mother, and almost lost my dad to literally the same lung cancer. His was caused by welding. The thing is, we were poor and he was totally cured. Missing a portion of his lung, but cured. They even paid for him to change careers. From my perspective, the medical system saved my poor father.

kashunstva 4y ago

> f*ck the American medical system To call it a _system_ is generous because it implies a goal-oriented design where each component fits together intentionally. This in no way describes healthcare in the U.S. If you have unlimited time, money, access, and medical knowledge, you can find ways to put together what you need. But lack one or more of those elements, and good luck to you.

celene-II_thro 4y ago

My experience has led me to the conclusion hospice needs strong regulation & it can't happen soon enough. Trigger warning: my story is both sick & sad. When my Dad was on his deathbed at home with lung cancer my Mom was in charge of administering the morphine dropper on a schedule like she was shown to do by the hospice nurse. I was younger then, not dealing with it well so was self-medicating & was very out of it. No appropriate situational awareness at all. The next morning after he was dead I was cleaning up & thought it odd that his morphine bottle was still half full but didn't think much of it. His body didn't look quite right either but being the first dead body I'd ever seen how would I know something was off? Decades later I learned his hands wouldn't go together because when he had died he was pushing her off him with all his strength while she was suffocating him. So on top of not getting his morphine he had her probably on top of his distended belly with all that pain exceeding what was already unimaginable, suffocating him. Before my Mom died she asked me if he'd molested me & I was surprised. I told her no, of course not, & soon afterward she started mismanaging her diabetes just a bit more than usual. She died of a heart attack a few months later- presumably from the diabetes. Though I think it was a suicide after realizing what she had done to Dad.