It takes courage to speak up to doctors and experts and say “No!” to their tests and treatments. But sometimes that’s the best thing you can do, because otherwise they may do things that you really don’t want.
Take my 89-year-old mother-in-law, Rachel. She lives in a nice little board-and-care home in San Mateo. She woke up this morning with slurred speech and weakness in her right arm. The aide there took her blood pressure and it was 210/100. Instead of calling us, the aide called paramedics, who took Rachel to the hospital. Aisha raced down there around 9 AM and has been with her all day.
She didn’t really need an ambulance. This has happened to Rachel about seven times before. We take her in; they give her a strong medicine to bring her pressure down, and the symptoms disappear. That’s what happened this time, too, except that for some reason they did a CAT scan first. But within an hour, her blood pressure was down to 150/84, her speech was normal, and she could have gone home.
That’s when a hotshot radiologist jumped into the mix. After the neurologist had already discharged Rachel, and Aisha had gone to get the car to pick her up, he saw something on the CAT scan that troubled him, and he wanted to do an ultrasound and maybe another test on her carotid artery.
The carotid artery brings blood to the brain, and if it’s blocked or damaged, it can cause brain damage. So Rachel, who had already gotten dressed, had to lie back down and wait for these new tests. Nobody could explain to Aisha or Rachel why these tests had to be done today; it apparently had to do with the radiologist’s schedule. He was the only one who could do them right, I guess.
But a bigger question was, why was he doing these tests at all? Suppose you find something wrong with her carotid? Are you going to operate today? Have you noticed that she is 89 years old, disabled, living in a board-and-care? Have you asked her what treatment she would accept? Because there was no way Rachel would go for blood vessel surgery. She doesn’t even like to take pills. And if you can’t do the treatment, why put everyone through this trauma to identify the problem?
What’s so weird about this is that the hospital is a Health Maintenance Organization (HMO). They’re not making any money from doing all these tests. Goodness knows what would have happened at a fee-for-service hospital.
Meanwhile, they hadn’t fed Rachel all day. Aisha went and bought her some lunch at the cafeteria, but they were both getting tired and annoyed. She had a social gathering to go to in the evening and she was going to miss it. I wish I had gone with her to advocate, but dragging my scooter in and out of the car makes things more difficult for her, so I didn’t go.
I was able to help by phone, though. I reminded her of another ER visit when Rachel was having trouble swallowing, and they tried to put a nasogastric tube down to give her medicines. She fought them, and Aisha and I said “No; she’s refusing. Stop.” To our surprise, the nurses were very supportive and one said, “I wish more people would say that.”
So Aisha and Rachel signed themselves out and got home for a late dinner. Rachel is speaking fine and her blood pressure is OK. Aisha didn’t make her party, but you can’t have everything.
American medicine overtreats people every day. It wastes hundreds of billions of dollars for care that nobody wants and that causes more problems than it solves. Because some doctor, who knows a patient only by her CAT scan, thinks he knows better than her or her family what is best for her, and because everyone is afraid of missing something and being sued, and because they believe that if they do their job right, everyone will live forever, people have painful, difficult, expensive medical experiences that often make things worse. Really the only defense you have is to say no, so don’t be afraid to do it!
For Rachel, we were able to limit the madness to one day. For some people, it goes on for years. But she will be with us tomorrow for her 90th birthday, instead of in a hospital. That’s something to look forward to.
Source URL: https://www.diabetesselfmanagement.com/blog/refusing-medical-treatments/
David Spero: David Spero has been a nurse for 40 years and has lived with multiple sclerosis for 30 years. He is the author of four books: The Art of Getting Well: Maximizing Health When You Have a Chronic Illness (Hunter House 2002), Diabetes: Sugar-coated Crisis — Who Gets It, Who Profits, and How to Stop It (New Society 2006, Diabetes Heroes (Jim Healthy 2014), and The Inn by the Healing Path: Stories on the road to wellness (Smashwords 2015.) He writes for Diabetes Self-Management and Pain-Free Living (formerly Arthritis Self-Management) magazines. His website is www.davidsperorn.com. His blog is TheInnbytheHealingPath.com.
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