A Difficult Time
My Journey in Medicine	by Jerry Sobieraj, MD © 2001
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Chapter 13: The Form Doctor

Some days, it seemed that the major task of the day was to complete forms. I felt as though I had become a "form doctor". One of the great things about primary care is that we get to fill out the forms. It isn't that specialists don't fill out forms. Sometimes they make disability assessments, or need to fill out insurance forms to justify a therapy within their specialty. But primary care doctors get all of them, every conceivable type. We got Visiting Nurse Association (VNA) forms, durable medical goods forms, transportation forms, disability forms, food pantry forms, housing forms, etc. If there was an interface between your patient and an outside provider or service, whether medical or not, you could be sure there was a form for you to complete associated with the service.

Some forms are perfunctory. The durable medical goods forms tend to be easy. Most often they come from a local company that generally rents, but occasionally sells, durable (as opposed to disposable) medical equipment. Common examples of durable medical goods include a commode, a walker, a booster for a toilet seat, etc. The forms for these items come with a generic request letter and an attached page with all of the information completed. Thus, I only had to review the information, decide if it was appropriate, sign it and put it in the pre-addressed envelope. These types of forms generally needed to be renewed annually.

Other forms require a bit more time. Many of these come from the VNA. It is the VNA who often provides patient information to the durable medical goods company about which supplies a patient needs. However, the major role of the VNA is to provide home services for elderly or infirmed patients after hospitalization. To get VNA services, a person needs to be home bound (i.e. physically incapable of leaving the home). At times, the VNA has to overstate the extent of a person’s disability in order to be able to provide the services the patient needs. After the VNA’s initial assessment, they send the primary care provider a 2-3 page form to review and sign. It lists all the medications (which are worth reviewing, as occasionally the list does contain an error), all the services provided, and great, exhaustive detail about any special nursing services that are provided (e.g. details about wound dressing changes). However, many of the VNA reports I received were redundant and did not add to the information already in a patient's chart. As forms went, the VNA reports were pretty easy to sign off in good conscience and return in the envelope provided.

One of my favorites involved forms which clearly stated that they were to be completed by the patient (i.e. the form would specifically state, "to be completed by patient"). It wasn't only patients who would ask me to complete their parts of the form, but also other providers. There were several forms from the state, which only required a health care professional (which could be a nurse, social worker, psychologist, physician, physical therapist, etc.) to complete the form. When I received a form to complete from a patient's social worker, when they also could have completed the same form themselves was frustrating, to say the least. Patients often treat jury duty forms in a similar fashion. Under our current legal system in Massachusetts, all adults get a jury duty form every three years. Some of my patients would decide they couldn't serve due to their medical condition, and send the form right off to me. They never bothered to read it (or have someone read it to them if they couldn't do so themselves), though it clearly required them to complete and sign it. I suspected that illiteracy and cultural differences might have contributed to some of these forms coming my way, but when they added to a growing pile of other forms to complete, it was difficult to be empathic.

Yet, the forms I dreaded most were medical disability forms. These were the most problematic because they had a lot of questions that needed to be answered, and they just kept coming, one after another, month after month. First I needed to define the condition causing the disability. Then I needed to note whether it met one of the categories accepted as a cause of disability, or it met disability standards, without meeting a specific disability criterion. Next I noted what my patient could and couldn't do. There were questions about how many hours my patient could sit per day (the range was 0-8 hours). After each question like this was another question about my patient’s ability to sit if they had breaks as opposed to doing it continuously (i.e. sitting all day). There were similar questions about standing, bending, lifting (and how many pounds my patient could lift: 0-10, 10-20, 20-40, >50?). Finally I had to explain what I was doing about the problem, and how long the disability was likely to last.

The disability forms from the Commonwealth of Massachusetts and Social Security were different from those provided by insurance companies. The latter were very interesting indeed. Not only were disability insurance company forms the most burdensome because of the rapidity with which they came, but they often contained questions that seemed to have an adversarial tone (e.g. if patient wasn’t getting worse, why couldn't he or she go back to work?). They also often required a return to work date, even when my prior forms had indicated clearly that the person was totally and permanently disabled (this was the way disability lawyers liked me to write it).

The biggest problem with the disability forms was that doctors rarely received specific training in assessing disability. I began to teach residents in primary care clinic about occupational health, but I never had formal training in it myself. What I learned and taught was from experience and the limited published information I found in the general medical literature. Doctors are thrust by the legal system into a role which most of us are totally incapable of handling well. The other issue in this regard, especially with private disability insurance, is the roadblocks that are continually thrown in the way of people who are truly hurting (physically and emotionally). These barriers may take the form of continued requests for additional information or recurrent hearings required by the disability insurer.

The disability insurance industry has many attorneys on their staffs. They are able to constantly create obstacles that make it difficult for injured people to make a fair claim. At least once a year I had a patient who couldn't afford his or her medications because the disability insurer stopped their payments and thus, their source of income to pay for their medications. (Once a patient’s condition is linked to a disability insurer, all health care payments related to that condition come from the disability insurer. If a person disability award is due to headaches, the person’s health insurer will not pay any health insurance claims that use headache as the diagnosis. All claims for service using headache as diagnosis must go through the disability insurer, even if the claims are made decades later. Disability insurers appear to review their case files about once every three to five years. I seemed apparent to me that the disability insurers had rules about how many cases they needed to move off the rolls so as to maintain profitability. I imagined (rightly or wrongly) that the reviewers and attorneys had quotas about how many cases they would be expected to ax per unit time (i.e. there would be an expectation that they could remove a defined number of active disability cases from the rolls every month). Often my patients who transiently lost their disability status would be re-instated later, but not without undue stress, anguish and potentially without treatment during that time for their medical condition. In addition, patients frequently had to hire an attorney who specialized in disability law just to salvage their benefits.

The Social Security Administration (SSA), which has managed long term disability (SSDI, social security disability income) for the U.S. Government, was just as bad. In fact, I never saw an SSDI claim go through on the first application. It appeared to be automatically denied the first time around. I routinely had to counsel patients to reapply, as this was just "part of the process". My suspicions about the perfunctory first application rejection by SSA were confirmed when a patient of mine who was dying of gastric cancer was rejected. Prior to her cancer, she had provided customer assistance for over five years at a local department store. She worked despite panic attacks that were difficult to control, hypertensive heart disease and sleep apnea. When she contracted stomach cancer, I convinced her to stop working and apply for disability. I even had to implore her to appeal her denial. I believe she received benefits for a month or two before she finally died.

If filling out forms wasn’t sufficiently onerous, at times I had to write a letter just to obtain the form which needed to be completed. For example, if a patient needed to miss work due to a short term disability, there were two ways to begin the process. One was available to all, an unpaid leave of absence under the Family Medical Leave Act (initially vetoed by G. H. W. Bush, but signed into law in 1993 by President Clinton). The second was through a short-term disability application. Both methods had associated forms which were to be completed by a physician. Many workplaces required a doctor’s letter stating that the employee was ill and needed time off. This led the employer to give the physician a form to complete which requested information identical to that included in the letter about the patient’s disability. I couldn't just ask the employee to get the form, a letter was generally required.

The most distressing aspect of disability forms is that they never end. Even patients with chronic, progressive conditions need to have a form completed annually stating that they aren't getting better. At some level, I understand the rationale behind such a request, as insurers don’t want to continue to pay if a claim is inactive. Yet I experienced such requests as another attempt to steal time from me. Over time, I felt required to keep copies of the forms I completed, so I could make sure every year’s version was consistent with prior years. Any deviation from year to year in how I completed the form would be noted by the disability insurance company, and would lead to a letter or phone call that required a response from me. Thus, even more time would need to be devoted to disability issues.

At times I found myself advising patients about how to proceed with disability claims. In general I recommended that if lost wages weren't involved, and the only issue was an injury, they should manage it through their health insurance. I didn't recommend this just to avoid disability forms, though surely it was tempting. I did it because I had seen people not be able to get the care they needed for a medical problem due to delinquent disability payments. Despite the agreement made by the disability insurer and my patient over what illness was covered, and what would be compensated, sometimes the insurer would just stop paying for unclear reasons. Even in cases where a judge ruled against a disability insurer in favor of my patient, there was little if anything done to the disability insurer for non-payment. My patients would just accrue medical bills related to their problem, and hope that eventually the disability insurer would start to pay again. Recently, when a young patient of mine with a work-related knee injury requested an evaluation, I strongly recommended that he treat it as a strict health problem to be managed by his health insurance. Otherwise, he risked having his knee "carved out" of future health insurance policies as a pre-existing condition. This would require all treatment of that knee for the next 40-50 years of his life to be managed through the disability insurance company of the employer who handled the original claim rather than through his health insurance.

The final form of frustration was the unexpected one. This was often a letter requesting that I defend my actions. A recent example was a form I received related to a patient I admitted to the hospital for fevers, weakness and severe anemia. There was no obvious infection causing the fever, so he wasn't on antibiotics. He was able to eat well enough, so he didn't need an IV (intravenous line to give fluids and medicine). He was a Jehovah's Witness, so despite his severe anemia, and symptoms related to it, he wasn't going to be transfused blood due to his religious beliefs. Yet he was ill, had been unsuccessfully battling his disease as an outpatient, and there were still diagnostic uncertainties about the cause of his illness. While he was in the hospital, we got his blood pressure under control and did a couple diagnostic tests which weren't easy to obtain on an outpatient basis. After a couple days, he went home feeling better than when he entered the hospital.

Yet, because we didn't put an intravenous line (IV) in him, or place a tube into any orifice (e.g. mouth, bladder, etc.), he wasn't deemed appropriate for admission. I had to justify in a letter to the insurance company why I had the audacity to admit this man to the hospital. If he hadn't been a Jehovah's Witness, he would likely have been transfused, thus satisfying the health insurance company. Yet, his religious beliefs prevented this, and thus, he was deemed inappropriate for admission. I have had colleagues who gave patients IV fluid unnecessarily, just to medically justify their patient’s hospitalization. Hospitals have become places where we do things to people (e.g. procedures and treatments). We no longer have the luxury of viewing hospitals as a place to care for the seriously ill, regardless of the specifics of their care. Most of the time the two coincide, those seriously ill need to have things done to them. When they don't, a doctor can well expect a letter asking why, and …please, answer in detail!

Recently, another example of the surprise type of letter involved a colleague of mine. She had cared for a young woman who felt feverish and fatigued. She did an extensive evaluation, including laboratory testing, trying to decipher her illness. She gave the patient instructions on how to manage her illness in the two week interval between the initial evaluation and her follow up visit. Yet, the patient felt it wasn't enough. She complained to her insurance company, who requested the doctor send them a letter detailing her justification for her treatment plan. This letter was in addition to the detailed office note she had already written about the services provided to the patient.

I realize that there are doctors out there ignoring patient complaints. In these cases, such a letter of justification may be appropriate. Yet the entitlement that some patients have come to expect from our health care system has been excessive. I found that people called with common maladies, which were best handled by rest and time, but that some patients demanded same day treatment, largely because it was covered by their health insurance (and often, they paid dearly for this insurance). A primary care doctor’s ability to use his or her medical judgment was no longer relevant or possible. Responding to such patient and insurer requests became imperative, or Big Brother would take action against one (with the appropriate paper work, of course).

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