Blogger Note: This information was related to me by a dear friend whose family has been a part of my life for all of my nearly 51 years. She gave me permission to share it here. Names have been removed.
Let me tell you the story of the tests Mother's been having. She discovered in the mid-90's that she had very low platelets. (In case you're unaware, that is what makes blood clot.) My sister (who is a nurse) tells me they should be 250,000--400,000; Mother's were about 50,000. She was preparing for cataract surgery and the pre-op blood work discovered this. The surgeon called off the surgery and insisted she see a hematologist. She did and they did a bone marrow test. At the time they thought it was likely a precursor to leukemia. They managed to get her platelets up and the surgeon finally did surgery on one cataract. Since then, he just doesn't want to do the other. (If you notice her having difficulty seeing, that is the reason.) He fears a slow bleed which would cause her to lose her vision.
In the following years, her platelet levels were checked and they just stayed low: 25,000 to 65,000. Her health, otherwise, was good. No signs of leukemia. She had surgery in 2000, I think. A local surgeon repaired 3 abdominal hernias. She received large doses of platelets before the surgery. Afterward, she had excessive internal bleeding and had to go back to the hospital for more platelets. The surgeon told her then that it was a good thing they had repaired all 3 hernias because he wouldn't be touching her with a scalpel again. So, time passed, her health remained stable, and her platelets stayed low. The doctor said she was not going to have leukemia. If that were the issue it would have manifested fairly soon after the original discovery. Mother's health has been so good, it was concluded that she could have been this way for many years and no one knew. There's no particular way to treat the condition. Platelets are rare and expensive. As long as she was healthy, it was just left alone.
My sister and I had always been concerned about a minor accident because of her "bleeding out." In early December, Mother fell outside her church and hit the concrete sidewalk. She suffered cuts, bruises, and two broken shoulders, among other things. The day she fell, once we were at the hospital, my sister, my niece (also a nurse) and I kept telling the nurses, "Her platelets are very low. Please check her blood. She could bleed to death, etc." That day they were 11,000. She was transported to a hospital in a nearby city, where they gave her platelets after she arrived. They gave her massive doses and got her up to 205,000 before the surgery. (One problem with platelets is that they only survive about 36 hours.) Mother came through fine and survived surgery to repair both shoulders (including a replacement of one!). She was transferred from the hospital to a nursing home, briefly, before we secured around-the-clock care for her at home, with lots of physical therapy.
During her recuperation, they have been checking her blood at least once a week. Last week I was in the family physician's office and he remarked that he wanted Mother to see a hematologist. The next thing I knew, my sister and the doctor had scheduled her for an ultra-sound on her spleen and liver and another bone marrow test. I was instantly against it. If there is no treatment, what is the point? An ultra-sound is not a bad experience, but a bone marrow test is quite painful and invasive. When I asked my sister why this was being done she said, "We just need to know where we are." Well, I thought that was stupid. We know where we are: Mother has low platelets, her health is fine and her energy level is as good as could be expected at 89. She could be checked for anemia and treat that if necessary. Why put her through all the rest?
Mother has 2 daughters telling her different things. I told her if she wanted to do this I was fine with it but I wouldn't do it for myself. I try very hard to respect the decision of a person regarding their own body even if I don't agree on the wisdom of the decision. Naturally, she listened to the daughter that was the nurse! On Sunday night Mother went to my niece's for a super-bowl party. Then on Monday, she went to the local hospital for the ultra-sound. Tuesday, she went to a nearby city for the bone marrow test. They didn't give her any anesthesia for whatever reasons. Probably relating to her age and/or body weight (very small lady). Don't know, I'm just guessing. At any rate, she told me it was the most painful experience of her life. She was literally crying by the time they finished. That, of course, pissed me off!
Yesterday, I had an appointment in another city and had planned to drop Mother off to visit our youngest sister. I asked her if she preferred to stay home. I knew she was tired and probably needed rest. She told me that if there was a car going to the town where my sister lives, she wanted to be in it. When I picked her up, I noticed her color was bad and she wasn't totally steady on her feet. She had declined noticeably since I last saw her 5 days ago. Once in the car, I looked over at her and she had a "droopy" look. Her head was down, shoulders slumped and eyes nearly closed. It worried me, but she was determined to see my sister. After we got home, I told her of my concern and suggested she get some serious rest.
Unfortunately, the rest of her week is busy, too. Today she is getting her hair done and has a conference with the hematologist at the hospital here to discuss the results of her tests. (Don't know what might come of that.) Then, tomorrow she has to go back to the city where she was hospitalized to see the orthopedist who did her surgery. That schedule would tire anyone. I don't think I could do all that in one week.
I'm irked because I feel all this decline is largely due to the tests they're doing. I still can see no reason for knowing "where we are." What are they going to do? The only thing I can see is to keep her from being anemic and that can be determined with a finger prick. I'm just angry with the whole medical community these days. I feel that doctors aren't so involved with healing as they are in doing procedures because they can. They have intellectual curiosity. Fine. I don't want my mother to be their guinea pig! The rest of their motivation for what they do is to avoid being sued. What happened to healing? I'm not saying there are no longer doctors who care about healing, but it often is secondary to other concerns.
I'm always cautious with "city" doctors because that's where the ones who go into medicine to make lots of money are to be found. Small town physicians are more likely concerned with the people they treat. There are fine, caring doctors in cities, but they look just like the greedy ones. It's not always easy to tell them apart. By the time you know, you've been "had." It's so sad to see medicine turned into a business. I think back to my grandfather, his brother and 3 sons (all physicians) and feel sad. They would be so unhappy to see where medicine has gone, yet they are the generation who let it happen. The medical profession wouldn't regulate itself and people reacted to poor treatment with law suits. It's bad enough to observe these things from a distance. Then when I see myself and the ones I love being the "victims" it stirs ire.
To finish my rant, I think doctors should learn how to let their patients die. They have gotten to the point that if a patient dies, they feel they have failed. Where did people get the notion that we're not supposed to die? That's part of our job. I understand treating illness and certainly see no problem with that. However, I told my physician that at this point in life, I don't want my life "saved." I just want to be treated to make life more pleasant and rewarding for as long as I'm here.