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<blockquote data-quote="Marguerite" data-source="post: 369847" data-attributes="member: 1991"><p>Thanks for that link, EB. We don't have anything formal like that, but for years I used to read my doctor's notes and letters, by reading upside down across the desk. One time when I was at a new specialist (a rehab specialist, allegedly to help me regain some lost fitness) I noted my favourite specialist had commented on my "addiction to opiate medication". I was cranky, because we had discussed it in depth and I had dug out information to show that while I was habituated to it, I was not an addict. Fix the pain and you fix the dependence. The problem was one of semantics - by my specialist's definition of addiction (someone whose body is used to the medications and whose body will go into withdrawal if the medications are stopped suddenly) then yes, I am an addict. But that is not the definition of addiction.</p><p></p><p>The rehab specialist very quickly dismissed the addiction issue as a non-issue but I made a point of raising it with my pain specialist, who communicated HIS views to my specialist.</p><p></p><p>My specialist had a go at me for my reading upside down across the desk - I said that a patient's gotta do what a patient's gotta do. He said that I had been hurt by doing it. I said I wouldn't have been hurt, if he had listened to me and kept up with his reading; and in fact, we had both learned and resolved issues because of my reading habits.</p><p></p><p>Some years later my specialist retired. He had a huge patient caseload and knew he wasn't being replaced with the same sort of specialist, so there was nobody who could take over all his patients. Because I was a long-termer and more able to look out for myself (compared to someone till feeling their way around the medical system) he cut me loose. He gave me my entire medical file (posted it out, it was too big to carry away with me). I found he had not only included all his notes, all his letters to other doctors, but also all my letters I had sent him, including Christmas cards. When he had been critical of where we chose to live, for example (he was concerned about how far we have to drive to get to a hospital) I sent him a postcard of the village beach and said, "This is the best medicine for me, to live here." It was all there.</p><p></p><p>Another specialist of mine (somewhat different modality, but has taken over as my main specialist now) sends a letter about me to my GP after each visit. He dictates that letter to his organiser while I am still there. he will ask me if there is anything I think he needs to include.</p><p></p><p>I am a firm believer in patients being a vital part of the health management team. </p><p></p><p>In my lifetime I have seen a lot of change in how medicine is carried out. My mother had chronic health problems and was often in hospital, in days when young children were often not permitted to visit the wards. But I was too young to be left home alone, so I would have to go to the hospital as well, then sit outside the ward in the waiting room. Visiting hour was for one hour in the evening. Usually my family would persuade the ward matron to let me in to see that my mother was still alive - the matron would peer out at me sitting still and quiet in the waiting room (I had been primed by my sisters) and sometimes I would be allowed in for five minutes.</p><p></p><p>We read "Readers Digest" and read of medical breakthroughs as well as that interesting series, "I Am Joe's [insert organ of your choice here]". We watched medical shows like "Dr Kildare" and "Ben Casey". There were some interesting ethical dilemmas concerning how much you tell the patients, and when. A young girl had a brain tumour and in removing the tumour, the surgeon also had to remove her visual cortex (or cut the optic nerve, or something - no details given) and the girl woke up wondering why everything was dark. Then the double episode dealing with the arrival of a very new dialysis machine (they were a very recent and expensive development) and there were more patients needing dialysis than the machine would be able to service; the doctors had to decide who was to get the treatment, and who would have to die. Lifestyle, occupation and age were all factors to be considered in the very painful decisions. The program dealt with the emotional responses of the patients and their families. It was, I felt, a benchmark program in that it acknowledged more than previous shows, that the whole patient and lifestyle, family etc need to be considered when making medical decisions. But what still struck me commonly in these shows, was the doctor on a pedestal. Also, the doctor often had the ethical dilemma of "Do I tell my patient that she is dying?" with the tragedy of the patient generally NOT being told because it would be too cruel.</p><p></p><p>In Readers Digest I read about Kay Kendall, who was diagnosed with leukemia while her husband Rex Harrison was performing on stage in "My Fair Lady" in London. As her husband, HE was told her her leukemia, but said she was not to be told; his wife was so full of life and love, he didn't want her final months to be filled with doom and gloom. And over those months he was glad to see that she continued happy and enjoying life, although complaining at times of still feeling tired. The article went on to comment on how pleased and gratified Rex was, that she never knew she had leukemia. She remained positive to the end. But reading between the lines, I believe she knew, realised he didn't want her to know, and spent her final months pretending to be ignorant of her impending death to spare HIM the pain. Don't be critical of the doctors or the husband - this was how things were done back then. But what opportunities they missed, to really talk! How tragic!</p><p></p><p>We know now that to have the opportunity to know, is a blessing. You have choices you can make in better knowledge. I think back to me recent brush with cancer and think back to the bad old 50s and how it could have been handled - there were a lot of choices to make and I am so glad I was given the chance, quickly, to make them. If there had been a lot of subterfuge and telling of the husband but not the wife, I would have been very suspicious and not taken it well. I also know husband - I don't think it is a burden he could handle on his own. But then, even in the 50s, I think husband would have walked out to the waiting room, called me in and then said to the doctor, "OK, now tell her what you just told me."</p><p></p><p>Times have changed a lot so it will be interesting to see what changes there are in the next 50 years!</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 369847, member: 1991"] Thanks for that link, EB. We don't have anything formal like that, but for years I used to read my doctor's notes and letters, by reading upside down across the desk. One time when I was at a new specialist (a rehab specialist, allegedly to help me regain some lost fitness) I noted my favourite specialist had commented on my "addiction to opiate medication". I was cranky, because we had discussed it in depth and I had dug out information to show that while I was habituated to it, I was not an addict. Fix the pain and you fix the dependence. The problem was one of semantics - by my specialist's definition of addiction (someone whose body is used to the medications and whose body will go into withdrawal if the medications are stopped suddenly) then yes, I am an addict. But that is not the definition of addiction. The rehab specialist very quickly dismissed the addiction issue as a non-issue but I made a point of raising it with my pain specialist, who communicated HIS views to my specialist. My specialist had a go at me for my reading upside down across the desk - I said that a patient's gotta do what a patient's gotta do. He said that I had been hurt by doing it. I said I wouldn't have been hurt, if he had listened to me and kept up with his reading; and in fact, we had both learned and resolved issues because of my reading habits. Some years later my specialist retired. He had a huge patient caseload and knew he wasn't being replaced with the same sort of specialist, so there was nobody who could take over all his patients. Because I was a long-termer and more able to look out for myself (compared to someone till feeling their way around the medical system) he cut me loose. He gave me my entire medical file (posted it out, it was too big to carry away with me). I found he had not only included all his notes, all his letters to other doctors, but also all my letters I had sent him, including Christmas cards. When he had been critical of where we chose to live, for example (he was concerned about how far we have to drive to get to a hospital) I sent him a postcard of the village beach and said, "This is the best medicine for me, to live here." It was all there. Another specialist of mine (somewhat different modality, but has taken over as my main specialist now) sends a letter about me to my GP after each visit. He dictates that letter to his organiser while I am still there. he will ask me if there is anything I think he needs to include. I am a firm believer in patients being a vital part of the health management team. In my lifetime I have seen a lot of change in how medicine is carried out. My mother had chronic health problems and was often in hospital, in days when young children were often not permitted to visit the wards. But I was too young to be left home alone, so I would have to go to the hospital as well, then sit outside the ward in the waiting room. Visiting hour was for one hour in the evening. Usually my family would persuade the ward matron to let me in to see that my mother was still alive - the matron would peer out at me sitting still and quiet in the waiting room (I had been primed by my sisters) and sometimes I would be allowed in for five minutes. We read "Readers Digest" and read of medical breakthroughs as well as that interesting series, "I Am Joe's [insert organ of your choice here]". We watched medical shows like "Dr Kildare" and "Ben Casey". There were some interesting ethical dilemmas concerning how much you tell the patients, and when. A young girl had a brain tumour and in removing the tumour, the surgeon also had to remove her visual cortex (or cut the optic nerve, or something - no details given) and the girl woke up wondering why everything was dark. Then the double episode dealing with the arrival of a very new dialysis machine (they were a very recent and expensive development) and there were more patients needing dialysis than the machine would be able to service; the doctors had to decide who was to get the treatment, and who would have to die. Lifestyle, occupation and age were all factors to be considered in the very painful decisions. The program dealt with the emotional responses of the patients and their families. It was, I felt, a benchmark program in that it acknowledged more than previous shows, that the whole patient and lifestyle, family etc need to be considered when making medical decisions. But what still struck me commonly in these shows, was the doctor on a pedestal. Also, the doctor often had the ethical dilemma of "Do I tell my patient that she is dying?" with the tragedy of the patient generally NOT being told because it would be too cruel. In Readers Digest I read about Kay Kendall, who was diagnosed with leukemia while her husband Rex Harrison was performing on stage in "My Fair Lady" in London. As her husband, HE was told her her leukemia, but said she was not to be told; his wife was so full of life and love, he didn't want her final months to be filled with doom and gloom. And over those months he was glad to see that she continued happy and enjoying life, although complaining at times of still feeling tired. The article went on to comment on how pleased and gratified Rex was, that she never knew she had leukemia. She remained positive to the end. But reading between the lines, I believe she knew, realised he didn't want her to know, and spent her final months pretending to be ignorant of her impending death to spare HIM the pain. Don't be critical of the doctors or the husband - this was how things were done back then. But what opportunities they missed, to really talk! How tragic! We know now that to have the opportunity to know, is a blessing. You have choices you can make in better knowledge. I think back to me recent brush with cancer and think back to the bad old 50s and how it could have been handled - there were a lot of choices to make and I am so glad I was given the chance, quickly, to make them. If there had been a lot of subterfuge and telling of the husband but not the wife, I would have been very suspicious and not taken it well. I also know husband - I don't think it is a burden he could handle on his own. But then, even in the 50s, I think husband would have walked out to the waiting room, called me in and then said to the doctor, "OK, now tell her what you just told me." Times have changed a lot so it will be interesting to see what changes there are in the next 50 years! Marg [/QUOTE]
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