I believe that my friend Paul died long before his time because he was accidentally mistreated by a medical bureaucracy. He was a trusting, kind man who did what people in authority told him to do because they were busy experts, and he didn’t feel that he had the right to bother them. Even though Paul kept having problems because of mistakes made with his treatment, he waited until those problems became emergencies instead of speaking up. With all my heart, I wish we had known what was happening at the time in order to advocate for him.
Many of us can tell stories about how a lack of awareness or skill on the part of well-meaning people or a breakdown of communication, even with very committed and talented health care providers, caused great harm to someone who had a medical problem. We need to know how to protect ourselves from being hurt in these types of situations, just as we need to know how to defend ourselves from a deliberate assault.
When facing health and medical issues, being able to advocate for yourself and your loved ones to protect your health and well-being can make the difference between life and death.
The basic protection strategies we teach in Kidpower, to children and adults alike, are to:
• Stay Aware
• Take Charge, and
• Get Help.
Here’s a personal story about how using these strategies helped me deal with a medical emergency.
Once, on an Elderhostel canoe trip with my then 78-year-old father, I slipped on white gravel over white sandstone and crashed backwards onto the hard ground . We were coming back from a long hike and had a steep canyon, many miles of river, and a far road to drive to get anywhere for medical attention. This was also prior to cell phone access being common, so we had no way to notify others who might help.
Although we all thought I had a bad sprain, the reality was that both bones in my leg had broken just above my ankle and then snapped back into perfect alignment. This meant that I had a fracture that could heal without surgery at that point, but that there was a high risk of becoming much more badly broken.
Right after I fell, I found myself starting to black out. Instead, I started breathing slowly, and told myself that I had to stay conscious to stay safe. I sat up, looked at the beautiful view of the Missouri River 1,000 feet below, and took a breath. Everyone was understandably worried about me, and I needed their help to get down the canyon wall, which I had so easily scrambled up a short while before.
People became so focused on taking care of me that I had to keep reminding them to make sure they were well balanced and braced themselves. At one point, if I had taken the hand the man above me was offering me, we would probably all have crashed into a heap onto the rocks below. I looked up at this man teetering on the rock ledge above me and said, “You need a better position for your hands and feet.”
“It’s fine,” he said.
“Get better-braced so we don’t fall,” I insisted.
My father did the paddling for both of us down the river and kept a sharp eye on me for the next two days as I hobbled, rode in the canoe, and was finally driven back to civilization.
When I got to the hospital, a poorly trained technician made my temporary cast too big and then broke it off in a way that left shards of sharp fiberglass pressing against my unprotected skin. If I had straightened my leg as he told me to, I would have lacerated my knee. Instead, I looked disbelievingly at the cast and said, “I want a nurse to look at this…NOW!” The nurse was horrified and apologetic.
As I left the hospital, I was handed a pair of crutches with a few instructions on how to use them and stern directions not to bump my leg at any cost. It constantly took all my effort not to topple over, and I could only go a few steps at a time. I did not learn until I got home that the crutches had been adjusted for a person who was much taller than I am.
At the airports my father and I went through on the way home, the airport attendants who pushed my wheelchair were constantly pushing me into harm’s way. Even though I kept reminding them that my leg could not be bumped, they shoved me directly into the paths of people running for their airplanes and right behind people swinging heavy suitcases off the luggage ramps. Because the airports were noisy and because the attendants were distracted and in a hurry, I had to get loud in order to be heard. Several collisions were narrowly missed because I shouted things like “EXCUSE ME! … WAIT! … LOOK OUT!”
By the time I got home, I was worn out — but, thanks to my father’s support, good luck, and my having known how to watch out and speak up for myself, the break in my leg was miraculously still in perfect alignment and healed quickly without surgery.
Knowing how to Stay Aware, Take Charge, and Get Help can have a huge impact on your physical and emotional safety.
Stay Aware. In a medical emergency, well-meaning people sometimes get so nervous that they will do things that are harmful rather than helpful. They might move someone in a way that makes the injury worse. They might panic and cause an accident, by not looking where they are going or not being fully aware about what they are doing.
Once my friend Amanda and I were driving home at dusk and encountered a group of carefree and joyful teenaged-boys racing their bikes down the street in front of us with no helmets and no lights, right in the middle of the road. They swerved around us, and we slowed down to avoid a collision. Suddenly, one boy bumped his bike against the curb and went sailing over the bars to hit his head on a telephone pole.
My friend and I pulled over and found this boy lying in the gutter knocked out cold. His shocked friends, having gone from immortality to harsh reality in 2 seconds, were about to carry him out of the street. We stopped these very upset young teens from potentially further injuring their friend, asked them to wave cars around us from the side of the road, called 9-1-1, and took care of this boy until help arrived. Thankfully, he called us a few days later to say that he was going to be okay.
In any large bureaucracy, like a hospital or an airport, the needs of the system can often interfere with the well being of the individual. Although many health care providers are deeply committed and competent, you need to Stay Aware that some people caring for you might be poorly trained, be too busy to pay close attention, be careless, be misinformed, be overwhelmed with personal problems, or have trouble communicating with each other effectively.
Take Charge. When you are hurt or not feeling well, it is normal to want someone else to take care of you. If you are conscious, you can make a decision about which people you do and don’t trust with your well-being. Pay attention to your environment and the hazards around you. Pay attention to the level of awareness and skill of the people helping you. Give people directions about what they may and may not do with your body.
Do not give away your power to people in positions of authority. Insist on knowing what all your choices are and the pros and cons of each choice. If people do not listen to you, speak up strongly, respectfully, and determinedly. Be willing to get loud if people fail to pay attention to your concerns.
An older friend of mine who was in the hospital for an extended stay had directions in her chart from her doctor not to have blood tests because her veins were too weak to handle being punctured by people unless they had a great deal of skill. Because normal hospital routine was that every patient had regular blood tests, and because technicians did not read her chart carefully each time, my friend finally started shouting, “NO blood draws! My doctor says NO blood draws!” each time a technician in a blue coat came near her bed.
Protect your time and your money by insisting on seeing the results of any tests done to you and by understanding enough about your body to notice when something does not make sense. A colleague of mine had a scan done and asked, “Are you sure that’s my neck?” It turned out the technician had mistakenly taken a scan of her lower back instead.
Write your questions down before you see the doctor and write down the answers. Make sure that you understand what you need to do. Pay attention to inconsistencies. Double-check everything. A friend of mine noticed that the prescription she was given was contradictory to her doctor’s directions. When she asked, it turned out that the pharmacy had made a mistake. If she had followed their directions, she would have taken a lethal dose of her medication within a day.
Get Help. When you are unable to take care of yourself, ask people you trust to be your advocates. Most health care providers are deeply committed to the well-being of their patients. Although mistakes occur, we must all appreciate and value the tremendous job that they are doing under very difficult circumstances. Having an advocate to provide help can make a tremendous difference in communication and the ability to ensure the best possible care.
According to Jeff, who has had many encounters with the medical and emergency care system with his parents and in-laws for a variety of serious medical issues over the past few years, “I am incredibly thankful that my sisters and I have been able to accompany and be there with them during their journeys. The system is overwhelmed. As I sat there and marveled at what the nurses, doctors and others do, and how much they must truly care to do what they do, I also witnessed the incredible challenges on both sides of the doctor / patient relationship to communicate accurately and efficiently about the past and present, to understand the values and priorities of the patient, and then synthesize and agree on what should and shouldn’t be done. I’ve spent many, many hours in emergency room bays, and I watched many elderly come in alone, and wondered many times how they were going to get through their own journey without somebody there to act as their recorder, translator, counselor and advocate. They do, and the system struggles heroically to do the best that it can, but it’s a difficult challenge.”
When you need help, speak up. In a big bureaucracy, you might have to interrupt busy people and be very persistent about asking them for what you need. You can get people to want to help you more if you are respectful rather than abusive, even though you might be frustrated because it takes so much energy to get people to pay attention to your boundaries and needs, especially when you don’t feel well. People will become more responsive if you express appreciation often about what they are doing right, even if you feel it should just be their jobs.
A few years ago, I was in the hospital and needed to have a test done before the doctor would agree that it was safe for me to be released. The test kept getting delayed, and the head nurse kept saying there was nothing she could do to speed things up. Flat on my back, hooked up to monitors and an IV, with total laryngitis completely unrelated to my reason for being there, I felt sad that this nurse thought she was helpless to affect the system she was in. I kept thanking her for what she felt she could do and also kept asking for her to insist on their getting the test done in time for me to leave that day unless there was a really important reason for me to stay another night.
This head nurse kept shaking her head and saying sorrowfully, “I’m sorry, but I have no power!”
Finally, I whispered, “Do you have the power to ASK?” The nurse looked startled and then did ask again. The test was conducted with good results, and I got to go home.
We each have the power to ask persistently, respectfully, and relentlessly!
REMEMBER that when you have a medical problem, you have the responsibility and the right to take care of yourself and your loved ones. Medical self-defense means paying close attention to what is happening, taking action to ensure proper treatment, and insisting on getting the help you need.
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