Adventures in Wonderland: A Canadian navigating the American Medical System.
Gallstones from Wikipedia commons.
I am a Canadian. I grew up in Canada and while I have traveled a lot more than most Canadians, I have never lived outside of Canada. I was a youngster when Canadian style socialized medicine appeared and so I’ve never really know anything else. I always took it for granted. My Ph.D. is in Human Genetics and this meant I spent a number of years working in a university’s medical faculty, often being trained right alongside medical residents. When you put me in a room of doctors chattering about something medical I can follow the conversation and even talk back. My higher level of training in human genetics as a Ph.D meant I taught undergraduate medical students my subject of speciality. I also had the opportunity to influence provincial (state level for American readers) government level medical policy.
My first experience with American medicine came when my husband developed terrible abdominal pain in his upper right quadrant. We called our private insurer. (No Canadian in their right mind crosses the border without extra private insurance unless they have unlimited wealth.) We were directed to a nearby town and given the addresses of two hospitals. We were told we had 100% coverage. Get the medical help we needed and let them know what was going on.
We stopped at the first hospital to have the most astonishing thing happen. While my husband leaned over a chair barely supporting himself in his pain, I was informed by the receptionist that they would not accept our insurance and she then ordered us to leave and leave immediately. I was so astonished I literally stood there with my mouth open for a moment and then I closed my mouth and asked her to repeat herself. I simply could not believe what I was hearing. She pointed to the door. This hospital did not accept people not insured by their private carrier, especially not Canadians, and we were to leave now or she would call her supervisor and security and have us escorted out.
It was at this point I realized how much I took the Canadian right to receive medical care for granted and how there was no such right in the USA. Someone standing nearby sweeping the floor told us (in a whisper) to go to the second hospital on my list because “They take anyone.” We arrived at the second hospital some twenty minutes later, my husband now nearly doubled over in agony and everything was very different. He was whisked right into the back of the emergency room by the triage nurse while they sat me down to fill out paperwork. My husband’s speedy entry into the emergency area really terrified me. In Canada, you only get past the ER triage nurse if you are about to die. Anything but eminent death means hours of waiting. Therefore my husband must be about to die. I eventually followed him and by the time I found him, he was on the bed and had his examining gown on and an emergency medical specialist was in the room checking him. The rest happened with dizzying speed to someone accustomed to the Canadian medical system.
A technician with an ultrasound machine showed up while the doctor was present and she did a full ultrasound and she told us it was gallstones. (In Canada technicians generally never tell a patient results.) While she worked someone drew blood and then the ER doctor was back to tell us the CT scan was ready for us. The CT and the blood work confirmed that my husband was suffering from acute hepatitus and pancreatitis due to a blocked common bile duct and infected gallbladder. He was admitted to the hospital and placed on IV fluids. The speed with which these expensive tests were ordered and administered was beyond astonishing to my Canadian mind.
I know the Canadian system can provide a scan just as quickly in an emergency. It’s just not the usual procedure. In Canada, such scans are not ordered without a full clinical work up, an educated guess as to the problem and the test is only done to confirm the diagnosis. There is often a discussion of which tests to do and which ones not to do depending on the full clinical picture. Sometimes this discussion involves the patient. For example, I went into the emergency room once with the worst migraine I ever had and the doctors discussed with me the relative merits of doing a spinal tap and the likelihood it would pick up something a CT did not and the cost/benefit ratio. (We decided together to just try a migraine medication first and that worked.) Here in this ER, no one asked us what test we might want or not want. No doctor actually touched my husband before the tests were underway and the clinical questions they asked were mind bogglingly minimal. “Let’s just wait to see what the tests show.”
My husband was also immediately admitted, even before the diagnosis was in. That too would be unheard of in a Canadian hospital. In fact “hallway medicine”, being left for hours or even days in a hallway in the ER until a bed opens up is a common political rallying point. “We will end hallway medicine.” (They never do.) I decided there was a great deal good to say for American medicine while a nurse had me fill out the paperwork about who my 100% insurer was. I filled out all the forms and told the nice lady I was supposed to call the insurance company back. She assured me they would call for me. After I left, I called the nice insurance company representative back anyway. The same nice person I had spoken to before answered me and I was given a case number and told not to worry. I had 100% coverage.
For two days my husband languished on IV fluids while built up poison was flushed out of his system to fix his suffering liver and pancreas. Nothing by food or mouth. He got only IV fluids and tincture of time. People came to do blood tests regularly. The hospital room was no cleaner than any Canadian hospital but I was amazed to see all the beds were the same age and matched the furniture. Even the curtains looked nice and new. Monday morning a surgeon walked in and announced he would be doing a procedure called an Endoscopic retrograde cholangiopancreatography (ERCP). ERCP which meant he would stick a scope with a camera down my husband’s throat, past his stomach and then up to the bile duct to have a look see. It would require an anesthetic and we got the speech about the potential dangers of full anesthetic that was just like the ones we had in Canada. More forms were signed.
At this point, the Red Queen arrived on the scene. A nurse rushed in to tell me my insurance company was on the telephone demanding an update. I went off to the nurses’ station to answer the telephone call. Suddenly everything with them had changed. I had not called back to tell them about my husband’s condition. I had not informed them about the hospitalization. (Actually I had but somehow they were now saying I hadn’t.) They had not had a chance to arrange for my husband to be transferred back to Canada for care. Therefore, they could choose not to pay for the hospitalization and the surgery. I had somehow violated the terms of my health insurance so our health problems were not their responsibility any longer. I had a sudden vision of bankruptcy. I started pleading. A nurse took the telephone, covered the receiver with her hand, and smilingly assured me she knew how to handle this. She then proceeded to tell the person on the other end off, using terms like “emergency” and “urgent” and “will die if not treated” and “too sick to be moved”. She then hung up and smiled at me again, saying it was all taken care of. I was shaken, but grateful. My husband was rolled off to have the ERCP. I found myself more worried about my insurance being cut off than my poor husband’s illness. I heartily wished we were back home in Canada.
My husband came out of the ERCP and the surgeon looked worried when he spoke to me. The procedure had gone well enough with one large stone removed but another was beyond his reach and so he had put in a stent to bypass the stone and allow the bile to drain. My husband needed surgery to remove the gallbladder the next day. It was all arranged. I asked about the insurance company, not my husband. The doctor told me not to worry about it. He had already called our insurer and it was all set up. The surgery was scheduled for tomorrow, early afternoon, providing the blood work came back showing continued improvement on the liver and pancreas. I breathed a sigh of relief. The insurance issue was okay. Then I started fretting about surgery.
The next day my husband seemed considerably improved. All the yellow in his skin was gone and the white of his eyes were back to being white from yellow. We were now in a bit of a routine knowing the nurses as we did. A man next door was living with all sorts of complications of diabetes and now without both his feet and most of one leg. He was raising a fuss. The place he wanted to go back to would not take him. Insurance again. He was being transferred to a different place he didn’t want to go stay at. It was not his home. He would not get good care. He would die of neglect. I heard him talking with his wife about he had used up all his coverage, reached some maximum amount and now he had to go to some other place for the uninsured with complex health issues. An ambulance crew arrived and removed him, over his protests, including more than once saying he’d rather be dead than go to this new place. I was very glad we would be going back to Canada.
They were doing the movement of my husband to his bed when a nurse came in. The insurance company was on the telephone again. Once again I was facing the same threat. The surgery was not approved in advance. They had not been given a chance to arrange to move him. They demanded to speak to the doctor and since none was available told me to tell everyone there would be no payment for the surgery until all the medical records, every last one was faxed for their approval. I saw my husband being rolled out of the room. I ran to them to tell them of this new wrinkle. One of the people getting my husband ready used a cell phone to call someone. A few minutes later I was summoned to the desk again to find a strange doctor. He called the number I had been given and among other things asked the person on the other end what medical degree they had. He hung up and then commented he better go see my husband since he had just said he had examined him. At this point, my husband was being wheeled out and the doctor walked over, picked up the chart, glanced at it. He asked my husband his name. After my husband said his name, he set the chart down and left. (We were later billed $850 dollars for this consultation.)
I still needed to fax all the records so I explained this to the nurse who handed me a form allowing them to send the medical records and told me I had to get my husband’s signature. I turned around to get him to sign but he was gone, wheeled off. I spent a frantic twenty minutes tracking him down and then getting him to sign. He was groggy from the meds they had given him and he asked me to stay with him. I couldn’t. I told him as soon as I got the forms upstairs I would be back. I ran with the forms upstairs. When I got back he was already in surgery.
The surgeon came out to tell me the surgery itself went very well but my husband had been in big trouble. The gall bladder was shrunken, badly infected, and had really needed to come out. With such a condition he was lucky to not be dead but he should recover nicely now. He then said something that I found kind of shocking. My husband was in exceptionally good condition for a man of his age and that was why he had survived. I thought of the man with diabetes, one year younger than my husband and shuddered. The doctor went out about how there was no sign of cancer. That hadn’t actually occurred to me until then.
The next morning the first doctor who had done the ERCP and put in the stents came to see us. He gave us his card and told us we needed to be be back in 6 weeks to 3 months to have these stents out. We were cleared for him to leave and for us to continue our trip to Boston where my husband was going to be a visiting professor for several months but we would have to return to New York. I listened carefully, checked all the paperwork we had been given and after he left, I called the insurance company. They immediately informed me they would not cover this stent removal. It was a planned procedure, not an emergency one and we would have to go back to Canada. Suddenly all our plans were up in the air and I didn’t know what we would do.
My husband was unsteady on his feet as I helped out to the truck. We went ‘home’ to our travel trailer and he collapsed to sleep while I fretted and worried. The more I thought about, the angrier I got. I had missed comforting my husband when he needed me in order to fight with an insurance company. What had happened was not right or fair. We had paid insurance premiums for years for just such an emergency. What right did our provider have to treat me in this fashion? What gave them the right to be so nasty and threaten me with bankruptcy and send me running around to fax forms and the like? This was wrong. When my husband awoke I told him everything that had happened. He had been unaware of any of this and he agreed it was not right. He called his company’s employee services person. She agreed this had not been right and promised to call us back after calling our provider. The next day we left for Boston.
The story of my adventures in the US health care is far from over but I think at this point I will break and summarize my observations. Health care in the USA is not a right. You can be refused health care and left to die if you don’t have the money required to pay for it. Some Americans have told me that isn’t the case. The first hospital that chased us away was violating the law. They could be charged. Be that as it may, they refused to provide care and if the other hospital had not taken us in, my husband would have died. On the other hand maybe it is correct and the reason that they rushed us out as quickly as they did was because they knew if he collapsed they would have to treat him and likely they would lose money. The other hospital had a clear policy of treating first and asking questions later. That hospital has to pay for everyone so clearly they must be charging those with insurance enough extra to cover those without. Americans do have a form of socialized medicine. In effect, Americans have privatized socialized medicine.
The message to be taken away from this is that in the USA clinical diagnostic skills are of far less importance than knowing what tests to order. In Canada doctors are taught to use their clinical skills first and order diagnostics tests after. They discuss costs and the cost of diagnostics tests is always part of the decision. For the insured in the USA, the cost of diagnostic tests is the last concern. If the insurance will over it, then order the tests. If you miss something, no matter how unimportant or far fetched the possibility, by not ordering a battery of tests doctors face a law suit. This means that costs are driven up by concern over law suits and doctors lose that fine edge of diagnostic clinical skills that Canadian doctors take pride in. Plus it costs a whole lot more to do all those tests.
Lastly psychological trauma. It’s hard enough to see someone you love go through agonizing pain and face surgery and possibly even death without the added stress of some clerk for the insurance company threatening to cut off your insurance. I have spoken to many Americans who confirmed this is normal practice by American insurance companies. Costs are so high they constantly try to cut people off for any excuse they can find. Contracts are complex and difficult. Managed care is a nightmare of inefficient bureaucracy. Clerks at the other end of telephones make life and death decisions. Even if you think you have 100% coverage, there are limitations and out clauses and ‘trip you up’ clauses designed to find excuses to cut you off. This means instead of being able to concentrate the needs of my poor sick husband, I had to chase paper, fight for the coverage I paid for and wander corridors trying to resolve things. This is an assault on the psychological welfare of patients and their families and an utterly dehumanizing experience. It’s wrong. That is the down side of American medicine. There is an upside which I will discuss next blog.
Next installment – “Complications.”