Decoding Health Care

Part 30: Being a patient (part one)

There is an adage that doctors are the worst patients. I can attest to that. It’s probably due in part to doctors thinking they have all the answers, so they want to direct their own care. Doctors don’t know how to be patients. They have no real idea what patients are experiencing and when they actually experience it for themselves it’s jarring (and uncomfortable).

I have enjoyed pretty good health for 65 years. I am on meds for my blood pressure and cholesterol and blood sugar, but these meds have been really effective and have had essentially no side effects. About 2 years ago I started having knee pain. This became progressively worse, limiting my ability to do the things I like to do. I saw a rheumatologist and an orthopedist with the ultimate diagnosis of degenerative osteoarthritis. Initially the symptoms waxed and waned and were generally controlled with ibuprofen. But then they got worse. I couldn’t walk very far and I started to have pain at night which interrupted my sleep. My orthopedist tried intra-articular steroids and hyaluronic acid, but neither resulted in more than a month of benefit. About 2 months ago, I had had enough and decided to proceed with total knee replacement (TKR).

This a pretty typical story for patients with DJD of the knee. There are over 750,000 knee replacements performed in the US every year. Almost 5% of Americans over the age of 50 have a knee replacement, and among octogenarians 10% have at least one artificial knee. TKR is one of the most common surgeries done by orthopedic surgeons (either number 2 or number 3 depending on who you ask). The complication rate is pretty low; just over 5% of these procedures have complications which include anesthesia complications, blood clots in the leg, or infections. The results are pretty good, although perhaps 20% of patients still have some knee pain after a year. It is generally felt that TKR is one of the hardest orthopedic surgeries to recover from (second to complicated spine surgery).

I am now a couple of weeks post-op and by all accounts doing fairly well. It certainly hasn’t been the most fun experience and I have a long way to go with rehab. All of the statistics I cited in the last paragraph were either presented to me pre-op or I was able to find doing a cursory internet search. But this is far from the complete story.

I learned a lot about illness by being a patient; I wish I understood these things when I was taking care of patients. Here are some things that are really important to patients:

1. Pain is bad (part one): Pain is subjective, and no two people experience a given level of pain the same way. As an oncologist, I saw many patients with pain. I felt that I was fairly liberal in my prescribing pain medications; I was especially sympathetic to my patients with cancer pain. But I did not fully grasp how soul crushing having pain every day can be, and it doesn’t have to be the worst pain ever. Constant pain takes its toll. It is difficult to concentrate. Food doesn’t taste good. Pain is why I chose to go ahead with surgery. Every day (before surgery) I woke up knowing I would have pain. As a physician I spent a lot of time addressing severity of pain and not enough addressing chronicity of pain (which is just as important).

2. Quality of life is important: Pain has a huge influence on quality of life. Being able to get a good night’s sleep is also vital to a good quality of life. Being able to exercise (or at the minimum to walk) is important. And these are only the beginning of what matters to patients. When I was in practice I didn’t spend enough time figuring out what was detracting from my patients’ quality of life (other than pain). I spent little time discussing sleep, mostly because I really didn’t know much about how to evaluate it or treat it (other than sleeping pills). In oncology, we often spend more time focusing on response rate or progression free survival and not enough time discussing quality of life and the side effects of treatment. At least in theory, this is covered in the informed consent process but I fear it is largely implied rather than explicitly addressed.

3. It is hard to wait. Once I decided to have surgery, I had to wait about 6 weeks for my procedure. There is a general recommendation that you need to wait three months from the last intra-articular steroid injection to reduce the risk of post-op infection. I needed to get pre-op testing and medical clearance. And it needed to fit my calendar as well as that of my surgeon. By the end of six weeks, I was desperate to proceed. Six weeks seemed like a long time; depending on the source of your data, that is about average in the US. But in Canada, the wait is more like 6 months (again, depending on the source of your data). If I needed to wait 6 months I would have been desperate. To be clear, my knee problems weren’t going to kill me and there isn’t a lot of evidence that the wait worsens outcomes. But we must acknowledge that the wait is completely the result of the health care system in place in Canada (national health insurance). Would this happen in the US if we adopted a similar national health insurance program? A lot of people think it would, and that deserves some serious debate.

4. Being a patient is complicated (and time consuming). Nothing is simple when you are the patient, and doctors often forget this. Let me give you an example. I asked my orthopedics team for a temporary handicapped parking permit. They readily agreed and printed out the DMV form and completed it in the office at a pre-op visit. The next business day, I drove to the DMV and got in line (there is always a line at the DMV). When I got to the window, the clerk pleasantly informed me that they do not issue temporary permits at the DMV office, only permanent ones, and that I needed to go to City Hall. Now this bit of information isn’t present on the DMV form. When I asked which office in City Hall I needed to go to she had no idea. I trekked across town but when I got to City Hall there was no information desk; I flagged down a polite young person who walked by and they suggested I go to the City Clerk’s office. This turned out to be correct. So I waited in line again (behind someone getting a dog license) and got the permit. My total time investment was about three hours. I thought about my patients with cancer who needed a handicapped permit and were forced to perform the same set of somersaults while feeling really bad. It is not difficult to imagine a world where this could all be done almost instantaneously on the internet, but it’s not.

There are countless other examples of how the system isn’t patient friendly. I had difficulty getting my post-op pain meds. Despite assurances that the scripts were electronically sent to my pharmacy, multiple phone calls to the pharmacy established that no prescriptions were sent. This triggered a series of phone calls to the surgeon’s office, numerous voice mails, and ultimately the discovery that there was a transmission error in the e-prescribing. It took several days to work this out. Thank goodness it was worked out 48 hrs before my surgery. But what if I hadn’t been so obsessive about everything being in place before surgery? These may sound like trivial matters and for me they were. But again, imagine a patient who doesn’t feel so well. To say these processes aren’t patient centric is an understatement.

5. Insurance works pretty good for common things. You probably thought I was going to discuss insurance when I talked about how inefficient everything is, but I didn’t because there have been absolutely no issues with my insurance (so far).

This may surprise you but it probably should not. Since I am over 65 I am on Medicare. When I enrolled, I needed to choose either traditional Medicare with a supplemental policy (Medigap) or go with Medicare Advantage. In either case, I would pay the Medicare part B premium (remember, Medicare is not free unless you are destitute and also qualify for Medicaid) and I would need part D coverage. If I went with the Medigap option, I would pay a monthly premium (in New York, about $400 a month) and in return could essentially go to any doctor or hospital I wanted and have no co-pays (not including part D drugs).

If I went with Medicare Advantage (MA), I would have no (or a nominal) premium but I would be subject to traditional health insurance utilization management, ie I would need to get prior auth, there would be restrictions on what hospital/doctor (network) I went to and I would have co-pays on some services (for example, $40 for an office visit with a specialist) as well as part D co-pays. In addition, I received basic dental and vision coverage and some other bells and whistles like reimbursement for gym membership. It is not difficult to understand why I, as a healthy person, chose Medicare Advantage.

But I did not anticipate my knee problems. As it turned out, that was irrelevant. My local hospital and surgeon were all in network for my surgery. I suppose if I wanted to go to the Hospital for Special Surgery in NYC that might have been an issue but I never really considered that. My surgery and physical therapy required prior authorization but my surgeon told me that there would be no difficulty obtaining it and that proved correct. Why? The care I chose was strictly by the book. The system was ready and able to approve and pay for my care without a delay. And my sum total co-pays to this point are less than one month Medigap premium.

Now I hope that I haven’t jinxed myself and that my course remains uncomplicated. But this got me to thinking about all the discussion regarding MA and utilization and network management. The reason MA is such a good choice for me is that the government is overpaying MA plans. This is partially because the payment is “risk adjusted” and the MA plans have learned how to game the system by attaching borderline questionable diagnoses to each beneficiary, optimizing the amount of money they receive. The government is on to this and we can expect that this risk adjustment scheme is going to fixed, and as a result the MA plans will either start charging a premium or limiting services or both. But for now, it’s still a pretty good benefit for most healthy seniors.

The utilization management and network management issues are something most Americans with employer sponsored health care are accustomed to. Health plans manage expensive “things”. They make sure that the drugs or procedures that are part of the treatment plan are based on medical evidence; if they are not, they say no. This sounds very straightforward but in fact it is not. Doctors (and health plans) consider the published medical evidence when they make treatment/coverage decisions. But the medical evidence is almost never comprehensive or definitive. Often the benefits require interpretation. Conflict arises because doctors lean towards yes and health plans lean towards no. You might conclude therefore that the doctor leans towards potentially benefiting the patient and the health plan leans toward potentially benefiting the health plan. But this is simplistic. There are many situations in medicine where the preponderance of evidence is that a given intervention will not work. Note that I did not say it had no chance of working. You might say that the answer should therefore always be yes (give the patient a chance). But these treatments have side effects and they have costs which someone must pay. There are treatments that are just wrong for a particular patient in a particular situation. The answer should be no. But that is not the American way.

How we determine which treatment is appropriate and which is not is a complicated question and deserves its own post. In summary, my MA plan has taken good care of me and insurance has been the one thing I haven’t needed to worry about.

That is a lot to digest, but we are only half done. Being a patient can teach doctors a lot.