Healthplans are dependent on guidelines and standardized medical protocols and use these protocols to decide on payment. This has led to both better quality care in most cases, and a total breakdown of quality for those few people who don’t fit the protocols.
Most of these protocols are guidelines rather than standards. A standard is a specific mandatory rule meant to ensure consistency and quality. It is relatively low level and designed to always be followed. While there are many standards in medicine, most of these are embedded in the training and practice of every doctor, nurse, therapist and other health professional. It is usually not necessary to write formal medical policies for standards as most standards fit into the “standards of care” that are part of medical licensure, overall quality review and standard insurance contracts. A guideline, in contrast, is a recommended, non-mandatory rule or set of rules that assist in ensuring consistency and quality and is often more complex, nuanced, and leaves room for individual doctor/patient decision making. Guidelines are the basis for the overwhelming volume of healthplan medical policies and at least theoretically should not always be followed when individual problems require more customized approaches that do not fit the guideline.
Healthplans develop their medical policies based on scholarly developed guidelines and expert practitioner committees, but often conveniently forget that guidelines are non-mandatory. Instead they administer them as standards. While they have appeals processes in place, the appeals are often administered to test whether facts were missed that allow the medical policy to be followed, rather than as a method to test whether the medical policy, i.e. the guideline, should not be followed due to the unique aspects of the situation. This is wrong from a patient care perspective, and is a subversion of the meaning of a guideline.
I see this far too often in my work, and even in problems that family and friends have in their journeys through the healthplan and health care systems. Recently this challenge of healthplan guidelines being administered as standards affected someone very close to me who has a rare type of seizure disorder. Let’s call him “Al” for privacy’s sake. Al has been on a relatively new anti-seizure medication for more than a year. This seizure disorder was hard to initially diagnose and then hard to treat due to the very unusual type of epilepsy. At the time, more than a year ago, I undertook a national search to find the best epilepsy expert to diagnose and treat the disorder. I found someone who was the leader of an international epilepsy program, who published a massive number of studies, had numerous grants, had been an author of books about epilepsy and who had trained many of the leaders in the field worldwide. Al is now under his care. The drug was approved for payment by the healthplan a year ago and if it had not been approved would have cost over $700 per month, more than Al can afford.
Now, more than a year later, the healthplan has decided to deny further payment for the medication. The medical policy requires that this drug only be used as a second drug in addition to another first line drug. By that logic, Al would need to be on another drug before this particular medication could be paid for. Thus it could be approved but only by prescribing another drug in addition to the present drug at more cost and more risk to Al and more cost to the plan.
When the denial was communicated via mail, Al first asked himself, “What did I do wrong?” If is amazing that for many people, the first instinct is to feel guilt and anxiety over the denial when anger may be the more appropriate emotion. Al did nothing wrong and has followed healthplan rules and physician’s instructions at every step of the process. He has just had the misfortune of having a disease which does not neatly fit into the medical guideline and the policy on which the payment decision is based. If the guideline were being used correctly, as a non-mandatory rule that acts as a quality guide, the judgment and knowledge of the treating physician, who in Al’s case is a national expert in epilepsy, would be allowed to override the policy. Unfortunately, healthplans all too often do not work that way.
At any point in their life, a person may fit into the category of someone who is benefiting from the protocols or fit into the category of someone who is being hurt by the adherence to a rigid protocol. It is not the case that only certain people will be hurt by the misapplication of a guideline. Rather any of us may be affected by the type of low probability high consequence event or illness that doesn't fit existing guidelines and the resulting healthplan policies. At that point, people should not be afraid to reach out and get help in reminding the paying organizations that the medical policy is a guideline and not a standard and that rigid adherence to the policy is neither responsible nor even safe for people when they are in the throes of that unusual illness or circumstance.