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I read your post, and can see why there are no comments.
You did not pose any questions, nor did you make any statements that would invite someone to refute them.
Your post is what it is: simple fact.
While it does seem like you have valid points, and others may disagree, their disagreement wouldn't change the facts of the story you relate, to there isn't much to comment on.
The post was a survey of medical practices as they have "sort of" evolved over this period. I would expect more to have similar experiences. For example, I did not know that my classmate "Jim" was similarly fed a line of BS.
I tried to make access to the full article but was unable to without taking a “free” trial. I am afraid that I will forget to cancel the registration. I will take my best stab at this. Spoiler alert; things are a lot better now than they were back in the day. More on this below.
Back in 1971, when I was 14, a junior high school acquaintance, also named Jim, also about 14, who was a friend of one of my friends, David, lost his mother. He was 13 years old at the time. The occasion for Dave sharing this with me was in July 2018 when his wife was near death from cancer. He asked me to come to dinner with him to discuss handling the matter with his children, and certain Jewish issues. I recall that Jim's mother told my father that "she was utterly exhausted" and he was not surprised when seven months later she was dead, from metastatic breast cancer. Dave told me that Jim was not told until a day or two before that his mother was not going to recover. I remember asking Jim, through that winter and spring whether his mother had made any recovery from a “bad back” and would be able to walk. I did not know until they announced in class that Jim's mother had died. When Dave talked to me that night in July 2018, he was telling me what a bad father "Jack," Jim's father was for not being more honest. I told Dave that in those days it was common that even the immediate family was not given an honest preview of the prognosis. Then I told Dave my story.
Between August 1971 and January 1973 I had a similar experience. My father had an operation for rectal cancer in late August 1971 and my mother and I were told that my father should expect a full recovery, that they had “gotten it all." The doctors knew at the time that this was not at all true. Even at a fourteen year old Reading level, I was able to learn from materials in the high school and public library more about the truth. I learned also from other doctors that I talked to along the way how serious the situation was. I did want to believe, however, that my father was as healthy as he looked during the summer of 1972 when I was playing tennis with him.
My mother was finally told the day after Thanksgiving 1972 of an adverse liver scan. Exactly three weeks later, on December 15th, 1972 my mother told me the story. I was so unsurprised that I said "I have a concert that I'm playing (tuba) in tonight; how am I going to get to the High School." It was a snowy and sleety night so I knew I could not take my bicycle. I could also see that my mother was in no condition to drive. I did wind up getting there either via taxi or via one of our friends.
I relate these stories in order to show how far indeed we have come. I suppose that it may not always be well intentions; in order to use more modern treatments the patient's cooperation is necessary. Nobody is good at delivering bad news; even telling people that they are being fired is not easy. Death is certainly a lot harder.
But at some level, people need to know accurate information so that they can plan their own affairs, and for what comes after them.
Giving people false hope or ignoring real issues doesn't help anyone.
I tried to make access to the full article but was unable to without taking a “free” trial. I am afraid that I will forget to cancel the registration. I will take my best stab at this. Spoiler alert; things are a lot better now than they were back in the day. More on this below.
I accessed it with some help from another poster. The article was an ocean of platitudes.
Quote:
Originally Posted by Serious Conversation
Quote:
Originally Posted by jbgusa
Between August 1971 and January 1973 I had a similar experience. My father had an operation for rectal cancer in late August 1971 and my mother and I were told that my father should expect a full recovery, that they had “gotten it all." The doctors knew at the time that this was not at all true. Even at a fourteen year old Reading level, I was able to learn from materials in the high school and public library more about the truth. I learned also from other doctors that I talked to along the way how serious the situation was. I did want to believe, however, that my father was as healthy as he looked during the summer of 1972 when I was playing tennis with him.
My mother was finally told the day after Thanksgiving 1972 of an adverse liver scan. Exactly three weeks later, on December 15th, 1972 my mother told me the story. I was so unsurprised that I said "I have a concert that I'm playing (tuba) in tonight; how am I going to get to the High School." It was a snowy and sleety night so I knew I could not take my bicycle. I could also see that my mother was in no condition to drive. I did wind up getting there either via taxi or via one of our friends.
Giving people false hope or ignoring real issues doesn't help anyone..... But at some level, people need to know accurate information so that they can plan their own affairs, and for what comes after them.
You have gotten to the very heart of my post. My father could have used the year and a third that he had to find a merger partner or purchaser for his interior architecture practice. He was told, after the August 1971 operation and his discharge from the hospital a month later (long story as to why) he was told to carry on as before. His first recurrence symptoms were in June 1972 and a month later he went for a liver scan. He and my mother was told that it was "clear." A friend of mine who was a volunteer at the hospital where it was administered later told me that that was a lie. Still, he was going to work every day through October 1972 and almost every day until December 8, 1972. That time could have been used productively to wind down or sell his rather lucrative business. By the time my mother (and not my father) was told Thanksgiving Friday, my mother's bargaining power in negotiating a sale to my father's employee was negligible. My mother received one small payment in January, after he died, from the employee.
As it turned out, my mother was able to remarry, having met my (eventual) stepfather in February 1973. Still, you make my point about "false hopes" and "ignoring real issues."
I accessed it with some help from another poster. The article was an ocean of platitudes.
You have gotten to the very heart of my post. My father could have used the year and a third that he had to find a merger partner or purchaser for his interior architecture practice. He was told, after the August 1971 operation and his discharge from the hospital a month later (long story as to why) he was told to carry on as before. His first recurrence symptoms were in June 1972 and a month later he went for a liver scan. He and my mother was told that it was "clear." A friend of mine who was a volunteer at the hospital where it was administered later told me that that was a lie. Still, he was going to work every day through October 1972 and almost every day until December 8, 1972. That time could have been used productively to wind down or sell his rather lucrative business. By the time my mother (and not my father) was told Thanksgiving Friday, my mother's bargaining power in negotiating a sale to my father's employee was negligible. My mother received one small payment in January, after he died, from the employee.
As it turned out, my mother was able to remarry, having met my (eventual) stepfather in February 1973. Still, you make my point about "false hopes" and "ignoring real issues."
If I knew I had about a year to live, I would obviously approach that year very differently than if I think things seem to be going normally. I think anyone would.
I don't understand why a medical professional would keep that from people. It's not like the medical professionals gain anything by giving folks that false hope. What if I went for most of the year thinking everything is mostly fine, then start "feeling bad" at month 11, and am dead within the next month?
There are going to be cases where things are missed, a disease progresses faster or slower than expected, etc., but I just don't understand the reasoning by reassuring people that things are fine when they're not.
If I knew I had about a year to live, I would obviously approach that year very differently than if I think things seem to be going normally. I think anyone would.
I don't understand why a medical professional would keep that from people. It's not like the medical professionals gain anything by giving folks that false hope. What if I went for most of the year thinking everything is mostly fine, then start "feeling bad" at month 11, and am dead within the next month?
There are going to be cases where things are missed, a disease progresses faster or slower than expected, etc., but I just don't understand the reasoning by reassuring people that things are fine when they're not.
As my post a few up describes, this was universal at least through the early 1970s. The profession may have rationalized this in a number of ways. One may have been to "spare the person," whatever that means. I think it was to avoid a difficult conversation, and one that doctors may have worried would trigger liability for themselves or doctors who may have "missed something." As I described in detail, my father was largely "feeling fine" from September 1971 through September or October 1972. In fact we even played tennis during October 1972, and he was dead on January 5,1973. So basically, that matches your "what if" rather well. My father, in another example, wanted to take three rather than two aspirins. Finally, in late November, after the second liver scan they greenlighted him to do that.
The practice has only improved, I believe, since there are more treatments that prolong life, and the patient's cooperation is needed. Otherwise I believe we'd still be in 1972 as far as handling of death.
My MIL was living by herself and needed something done with her Thyroid, she needed Cardiac clearance for it to happen. Cardiac ended up scheduled 3 stents surgery in June. It ended up being 7 stents and she had problems with the anesthesia, so she was in the hospital almost 2 weeks. After that she was in Rehab for 2 weeks - after those two weeks, she stayed there (because my BIL and SIL went on vacation, and my husband had to come home for some medical appointments of his own.) This all happened in Arizona - we live in Texas. After a month in the place, she had rehab; she had an infection of some kind that was resist to meds - it was causing some mental health issues that weren't there before she had the surgery. My SIL was insistent that 89 yo mom needed to be in Assisted Living. My husband asked his mom "Do you want to do Cardiac Rehab in Assisted Living or Texas" TEXAS she said. This was late August. He flew with her, home to our house. The next day, he had to fly back to AZ to drive a car back home so we would have more than one vehicle. He is retired and I am still working fulltime. While I took him to airport - MIL got up with her walker and somehow fell down bumping her head and losing her hearing aid. I got home and found her on the kitchen floor. My gosh I was so scared. I found her hearing aid and she said no 911 - just get a neighbor to help me up. I ran across the street and got Charles and his wife Johnny. We all got her up into a chair, but the lump on the back of her head was so large, and red. We all thought I should take her to ER. I did - after 4 hours, they sent us home, no brain bleed, keep her quiet. My husband got home 2 days later. He took her to our MD, and he changed her antibiotic and put a referral in for Cardiac Rehab. She wouldn't sleep in the bedroom, just on the love seat with her feet raised. She needed help going to the bathroom and getting clean. Over the next couple of weeks, she seemed to be getting worse, so we called blue cross call a nurse, she said to call 911. They came and took her to the hospital. Our MD was doing rounds and ordered many more tests after a few days and a MRI, he came into the room, and called Mark and me out to the hall. They found pancreatic cancer, but with how bad she was a biopsy was ruled out. Did we want him to discuss this with his mom? YES. He told her and she said: "Well, know we know what it is". She got discharged to Hospice. Without a biopsy the doctor told us could be a couple months, but probably not. We cleaned out our home office and Hospice brought a hospital bed, and other things in and ambulance brought her home. Most of her nieces and nephews came to see her, all 4 of her grandkids came, and on of husband's cousin was with her, and I called them to dinner. MIL was not eating by then. Mom died that night, October 3, 2023, while we were having dinner. Not six months before all this she was an elderly lady living by herself. I thought the doctors did very well with her, here in TX.
I tried to make access to the full article but was unable to without taking a “free” trial. I am afraid that I will forget to cancel the registration. I will take my best stab at this. Spoiler alert; things are a lot better now than they were back in the day. More on this below.
Back in 1971, when I was 14, a junior high school acquaintance, also named Jim, also about 14, who was a friend of one of my friends, David, lost his mother. He was 13 years old at the time. The occasion for Dave sharing this with me was in July 2018 when his wife was near death from cancer. He asked me to come to dinner with him to discuss handling the matter with his children, and certain Jewish issues. I recall that Jim's mother told my father that "she was utterly exhausted" and he was not surprised when seven months later she was dead, from metastatic breast cancer. Dave told me that Jim was not told until a day or two before that his mother was not going to recover. I remember asking Jim, through that winter and spring whether his mother had made any recovery from a “bad back” and would be able to walk. I did not know until they announced in class that Jim's mother had died. When Dave talked to me that night in July 2018, he was telling me what a bad father "Jack," Jim's father was for not being more honest. I told Dave that in those days it was common that even the immediate family was not given an honest preview of the prognosis. Then I told Dave my story.
Between August 1971 and January 1973 I had a similar experience. My father had an operation for rectal cancer in late August 1971 and my mother and I were told that my father should expect a full recovery, that they had “gotten it all." The doctors knew at the time that this was not at all true. Even at a fourteen year old Reading level, I was able to learn from materials in the high school and public library more about the truth. I learned also from other doctors that I talked to along the way how serious the situation was. I did want to believe, however, that my father was as healthy as he looked during the summer of 1972 when I was playing tennis with him.
My mother was finally told the day after Thanksgiving 1972 of an adverse liver scan. Exactly three weeks later, on December 15th, 1972 my mother told me the story. I was so unsurprised that I said "I have a concert that I'm playing (tuba) in tonight; how am I going to get to the High School." It was a snowy and sleety night so I knew I could not take my bicycle. I could also see that my mother was in no condition to drive. I did wind up getting there either via taxi or via one of our friends.
I relate these stories in order to show how far indeed we have come. I suppose that it may not always be well intentions; in order to use more modern treatments the patient's cooperation is necessary. Nobody is good at delivering bad news; even telling people that they are being fired is not easy. Death is certainly a lot harder.
OK I will try to make some at least semi-intelligent comments about your post:
First, yeah, the ability to detect cancer sooner when it can be treated more successfully have advanced considerably in the last roughly 50 years. That said, if you don't go get the scans done, mastering the obvious, you won't benefit. So that's something actionable for those of us who are overdue for various scans.
Second, treatment is much more effective now than 50 years ago. Particularly St. Jude Hospital has really improved survival rates, at least for childhood cancer. Some improvements are quite dramatic, some cancers that had a more than 90% death rate then, now have a 90% or better survival rate. I'm not a doctor, but would think that much of the research done on children would apply equally to adults, even senior adults. But don't quote me on that, I'm not certain it's true.
But, yeah, talking about death is still quite hard for most of us. Not sure what to do about that. The eldest son of a just-retired work colleague had treatment for a rare brain cancer, which included an astoundingly high dose of radiation to his head. I work in nuclear and the dose, 8000 REM, is something I would associate with immediate death. The entire dose was not administered all at once, instead over a few weeks. This bought him a few good years of remission. But the tumor has come back, and his doctors don't think he could even survive such a treatment again. It was a "Hail Mary" type treatment that all knew going in could only be done once. He's still living, staying with his parents, who fortunately are borderline wealthy, and his mom is a retired high-level nurse. So he's got the best at home care he could have. But he is walking with a walker, a couple of weeks ago his Dad, him and I went to a local Original Pancake House, he enjoyed some pancakes with us. We talked about various things, but not about his impending almost certain death. He is less than 40. I suggested we go to OPH again last week, and his Dad said he was too weak to walk a few yards from the car to the restaurant. He will probably have some better weeks again before the end, but, we all know the end is coming. As it is for all of us really, but most of us are not staring the Grim Reaper in the eye like he is.
OK I will try to make some at least semi-intelligent comments about your post:
No worries; you're far more than "semi-intelligent."
Quote:
Originally Posted by M3 Mitch
First, yeah, the ability to detect cancer sooner when it can be treated more successfully have advanced considerably in the last roughly 50 years. That said, if you don't go get the scans done, mastering the obvious, you won't benefit. So that's something actionable for those of us who are overdue for various scans.
There is some controversy about whether "catching it early" gives you the same five years that you would have had. I am gearing up for a colonoscopy soon and have the sinking feeling that it's largely theater. There are still many dying of that form of cancer. One advance that clearly has been made is in prevention; we have a lot fewer educated people smoking than in days gone by.
Quote:
Originally Posted by M3 Mitch
Second, treatment is much more effective now than 50 years ago. Particularly St. Jude Hospital has really improved survival rates, at least for childhood cancer. Some improvements are quite dramatic, some cancers that had a more than 90% death rate then, now have a 90% or better survival rate. I'm not a doctor, but would think that much of the research done on children would apply equally to adults, even senior adults. But don't quote me on that, I'm not certain it's true.
I have not researched childhood cancers. It does seem that much more progress has been made with the lymphomas and leukemias than with "solid body" tumors such s breast, colon, brain, cervical, uterine, etc. The long-term survival rates have obviously jumped from near-zero to loftier levels. Many others, particularly pancreatic, still have an abysmal prognosis. My own preference might, if diagnosed with a solid-body, might be to get the initial operation, and after t hat opt for palliative. I am not sure that chemo/radiation really snuff out metastatic solid-body cancers. Also, as life spans advance, I am not sure that it makes sense for some of these brilliant treatments to be used on the elderly. I am 67 and still am not retired. I am not sure that I would want treatments I would have gotten at 45.
My mother, for example, had uterine. The initial cancer was operated on, followed by chemo and radiation. Second time around a colonoscopy found spread. The next almost three years were agonizing, with futile treatments, and dementia thrown in. I wouldn't wish that on my worst enemy. At around the same time as my mother's second go-round a friend's wife developed uterine cancer. The following six years were uneven, and ended in death. In her case I might have done what she did; their twins still had a mother from ages six through 13.
Quote:
Originally Posted by M3 Mitch
But, yeah, talking about death is still quite hard for most of us. Not sure what to do about that. The eldest son of a just-retired work colleague had treatment for a rare brain cancer, which included an astoundingly high dose of radiation to his head. I work in nuclear and the dose, 8000 REM, is something I would associate with immediate death. The entire dose was not administered all at once, instead over a few weeks. This bought him a few good years of remission. But the tumor has come back, and his doctors don't think he could even survive such a treatment again. It was a "Hail Mary" type treatment that all knew going in could only be done once. He's still living, staying with his parents, who fortunately are borderline wealthy, and his mom is a retired high-level nurse. So he's got the best at home care he could have. But he is walking with a walker, a couple of weeks ago his Dad, him and I went to a local Original Pancake House, he enjoyed some pancakes with us. We talked about various things, but not about his impending almost certain death. He is less than 40. I suggested we go to OPH again last week, and his Dad said he was too weak to walk a few yards from the car to the restaurant. He will probably have some better weeks again before the end, but, we all know the end is coming. As it is for all of us really, but most of us are not staring the Grim Reaper in the eye like he is.
That is truly a heartbreaking tale. That illustrates why I might go for the initial "Hail Mary" treatment but nothing further beyond palliative care. That is also why I treasure the patient and his or her family being given the necessary information to make decisions themselves rather than giving doctors, nurses and hospital ethics boards free reign to do what they want while feeding the family "happy horse excrement."
The post was a survey of medical practices as they have "sort of" evolved over this period. I would expect more to have similar experiences. For example, I did not know that my classmate "Jim" was similarly fed a line of BS.
Oh, there must be many out there. I was a nursing student from 1970-1973. One of the few distinct memories I have from Nursing School is the following:
After a lecture regarding surgery and cancer, the instructor told the students to raise their hand if they approved of the policy whereby surgical patients diagnosed with metastatic cancer nor their families were informed of the patient's true prognosis.
IIRC, most of the students agreed with the policy. After all, why spend precious time worrying about how little time is actually left? And, what if the patient lived longer than expected? Etc.
Then the instructor asked, "What if you were the patient? Would you want to know?" I swear, every damn one of us raised our hands.
Fast-forward to today. The major fear among the elderly is dementia. The diagnosis will be shared with the family, but not the patient. After all, why upset the patient when there is no effective treatment? Echos of the past.
Oh, there must be many out there. I was a nursing student from 1970-1973. One of the few distinct memories I have from Nursing School is the following:
After a lecture regarding surgery and cancer, the instructor told the students to raise their hand if they approved of the policy whereby surgical patients diagnosed with metastatic cancer nor their families were informed of the patient's true prognosis.
IIRC, most of the students agreed with the policy. After all, why spend precious time worrying about how little time is actually left? And, what if the patient lived longer than expected? Etc.
Then the instructor asked, "What if you were the patient? Would you want to know?" I swear, every damn one of us raised our hands.
I did not know it was as bad as mendacious information being actually instructed.
Quote:
Originally Posted by lenora
Fast-forward to today. The major fear among the elderly is dementia. The diagnosis will be shared with the family, but not the patient. After all, why upset the patient when there is no effective treatment? Echos of the past.
I agree with you. People should be told so that they would know to plan their affairs accordingly. And, this is a tough topic to broach but many would likely prefer to be able to arrange the termination of their own life after, say, one last party. People should have that right, when they are able to make the decision.
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