At one point or other, I have complained to several of Max’s specialists about how difficult it is to get into see them. It is fascinating to me that when I have done so they have almost without exception assured me they understand and have coached me in backdoor ways to get through their own bureaucracy.
For Max’s allergist, who also manages his asthma, the backdoor she suggested was to call and ask for a same-day appointment to see her practice’s respiratory therapist. She assured me the respiratory therapist was almost always there. If the therapist had any concerns or heard any wheezing, he or she would pull in the allergist. Voila, we would have a way around a three-month wait, which is what you would be told if you called and asked for an appointment.
With Max’s neurosurgeon, the way to get the doctor to answer direct questions was to call after hours. If you called during the day, the nurse, not the surgeon, would attempt to answer the question when she had a few minutes — which may or may not be the same day you asked the question. After hours, the surgeon explained, he or whoever the on call surgeon was would come right to the phone. You could have a direct conversation about the issue. The surgeon also suggested scheduling routine appointments first thing in the morning. If we had questions for him while Max was admitted to the hospital, we could always have the nurses page him. “Neurosurgeons are busy,” he explained, a fact which I’m sure I wasn’t even disputing when he gave me more advice than I had even sought about getting more timely answers to our concerns.
With the pediatrician we used when we lived in what I like to describe as the sleepy lost-in-time town where we spent the kids’ preschool (also known as germ festival) years, the way was to have the direct line of the pediatrician’s favorite nurse. It turns out the town had significantly more patients than the two pediatric clinics could serve. Sometimes at odd hours during the day the front desk staff would just stop answering the phones. I cannot tell you how frustrating it is for a mom of a sick kid to know the medical staff was all there but to have no way to reach them. That was, it was frustrating until I vented and the pediatrician quite matter-of-factly gave me the direct number of his favorite nurse. She almost always answered her line.
And I could go on … ENTs, eye doctors, neurologists — we have had this issue many times. They all had ideas on how to beat their own systems. It is in this context that I have been watching the debate over universal health care.
No matter your politics about the recently enacted individual mandate one aspect of it that tends to get observers worked up is the idea that requiring insurance of everyone will flood the system and lead to rationing of care.
When the government proposed paying doctors to talk about end-of-life issues with their patients, the rhetoric became “death panels” and pulling the plug on Grandma. The whole notion of rationing never even got discussed at least not rationally. I would like to propose, though, that in many parts of the country and in many specialized areas rationing already exists.
Throughout the kids’ lives, Jason has worked primarily for state government. We have always had what many would consider good insurance. When we lived in Tennessee, it was an H.M.O. with a set co-pay (my preference). Where we are now in Arkansas, it is a P.P.O with a deductible and an 80-20 split after that.
While we theoretically have a choice of many doctors, the specialists Max needs are in high demand. To get in to see them typically involves direct referrals from pediatricians or other specialists and months-long waits. Since most of them are only available through children’s hospitals or university medical centers, patients on Medicaid are quite correctly given the same priority in scheduling as patients with private insurance. The only difference is private insurance users usually end up paying more for the service, which is quite proper in my view from an ethical model, but not exactly the usual economic model.
Usually if you are paying more for a service, you can expect some perks for it. By contrast, I find what we get are often more arbitrary rules than you find on lower-cost government insurance.
I know I am nitpicking here, but it irks me that our insurance company will pay for a wig for kids with cancer but not for kids with alopecia. Never mind that hair loss from cancer treatment is almost always temporary while hair loss from alopecia is often much more persistent. I find it completely illogical that they will pay for mental health services for Claire to talk with a psychologist about the social consequences of hair loss but they won’t cover visits with a dermatologist because they consider alopecia to be “cosmetic” as if it were a nose job even though it’s an autoimmune disorder.
While that is the most irritating and to me glaring inconsistency, I have found several other differences in coverage that make no sense. For instance, our thoughtful cost-conscious ophthalmologist always asks us if we have vision insurance before marking Max’s forms. It turns out the insurance company will pay for a vision check for him because he has a shunt and a complex neurological diagnosis that could affect his vision (if the ophthalmologist checks the correct box anyway) but since we don’t have vision insurance they wouldn’t pay to monitor his run-of-the-mill fairsightedness even though that is what prompted his current need for glasses. It seems to me being able to see well is important no matter the source of the problem.
Along the same lines, our previous insurance company would not pay for us to discuss Max’s diet with a nutritionist, but they would cover ambulance rides, replacement epipens and multiple emergency room visits if we hadn’t been able to get a handle on his food allergies on our own. Presumably they also would have paid for any diseases he developed as result of vitamin deficiencies, although to this point I haven’t wanted to test that theory.
Don’t get me wrong. I’m happy to have insurance and access to good care. When I get too frustrated, I close my eyes and picture mothers in third-world countries hiking hundreds of miles across desert lands carrying sick children on their backs just to get access to a make-shift clinic. I’m grateful for Jason’s job. I’m grateful that we have options. I’m grateful that if something happens our country provides a safety net of insurance for those who can’t afford to pay.
But it’s hard not to find a lot of these rules to be arbitrary. It’s hard not to resent how much we have to pay out of pocket relative to other families. Maybe I would think differently if I had healthier kids, but it is hard not to view free health care especially health care for kids as a really good idea if not a right. At the very least it seems silly to not have the discussion about rationing and if it can be managed.
Rather than have doctors spend time coaching patients and their loved ones about ways to get around the system, wouldn’t it make more sense to design a better system? We should identify and discuss issues like doctor shortages straight up, and we should have outlets where we can discuss what medical conditions are covered in public with a panel of medical experts interested in healing patients instead of behind closed doors at an insurance company with a panel of experts interested in maximizing share prices.
I’m not even sure we have to have individual mandates and universal coverage, but I do know I’m going to hang on to the direct line numbers of the nurses I have and leave room in my address book for a few more just in case. I guess when I am frustrated I’m going to keep asking the doctors for tips in gaming their own systems. They usually have good suggestions.