It is difficult enough for patients to cope with the shock of being told by a physician that they have a chronic disease. As laymen, it is also tough to deal with the technical medical language and to try to comprehend what has happened within our bodies. This problem is understandable, as the science behind diagnosis, treatment and dealing with relapse is extremely complicated.
A caring and compassionate doctor can help lessen a patient's anxiety and enhance their understanding of their disease by spending time with them (and their caregivers) to clearly discuss their illness and what regimens will be recommended -- and to empower them to do research on their own and ask questions during appointments.
However, an entire cottage industry has been created by medical bureaucrats to play games with definitions in order to obfuscate, confuse and bewilder patients. It also frustrates their doctors and complicates the ability to deal with patient needs and goals in care.
Catch phrases used by insurance companies, medical administrators and public health officials are part of the problem. Words have a specific meaning within science, but words develop a political meaning when used by these non-practicing medical officials. To quote George Orwell, "Political language is designed to make lies sound truthful and murder respectable and to give an appearance of solidity to pure wind."
A tragic side effect of additional government oversight of our health care system is that we see the veracity of Orwell's observations. Political definitions take precedence over scientific definitions in an attempt to try to bend the health care cost curve downwards. Unfortunately, the bending of this curve is usually being done over the backs of those who are chronically ill.
Political people have long known that if you control the meanings of words, you effectively control the people who use the words. (This is true even within the medical profession.) And if you make the definitions difficult, you limit the ability of those who are affected by them to disagree or debate their effect. Sadly these limits do affect both patients and physicians!
At every medical convention that I have attended, there is always a panel on how to define words "quality" and "value" as they relate to what, when and how much care the sick will receive. Well, it is not really a debate, as patients are often left out of the conversation and doctors are forced to adhere to standards as defined by their administrators, with little opportunity for critical input. And the winner of the debate on what defines quality and value will determine the future of our health care system.
Please note that this battle over definitions is not a left versus right issue -- it is bipartisan, as seen in this Daily Kos quote that relates to Orwell's views.
Apply this basic principle to everything you read, every piece of fashionable jargon that is slipped into the discourse, apply it to terminology designed to hide the reality. What are they trying to hide in the verbal dross? When confronted with these habits, I recommend following Orwell's advice, jeer loudly and often. I try. Simplified English does not mean that the concept is dumbed down, it just means that the lies and their intent have nowhere to hide.
Examples of this word play include the use of the phrase "step therapy," a process in which older drugs must be tried before newer and more effective treatment. There is another and more accurate phrase used for this situation -- "fail first." One must fail on the old drug before being allowed by insurance companies to try the better medication. In this case "failure" can mean poorer health and even premature death. "Step therapy" often merely transfers the ultimate insurance expense from the healthcare carrier to the life insurance carrier.
When deciding whether to allow Hepatitis C patients access to drugs that have a cure rate of over 90 percent, insurance companies decide on care based on a definition of how scarred and damaged one's liver must be in order to gain access these miracle drugs. This is a big problem in California, where one of the health care systems is denying the right treatment at the right time while banking billions in reserves.
Even when administrators try to help, they can inflict harm. Everyone in the medical supply chain now claims to be "patient centered" and that they respond to consumer needs. Their actions ring hollow -- their use of the phrase is for marketing and public relations purposes, not to listen to us and help the patient in need.
To me, "patient centered" within the current health system conjures up the image of a circular firing squad, with patients being attacked and prodded from every angle. Large studies are funded to describe what this phrase actually means in plural as opposed to realizing that every individual patient has different needs, goals, response to care and relapse potential. Doctors understand that "patient centered" means that each patient is different and that we are not averages subject to one size fits all care -- why can't these administrators accept this and let our doctors practice the art and science of medicine?
"Precision medicine" has also become a popular phrase. At a convention this year, a speaker implied that if you want to get a government grant or funding, it would be best to use this phrase as opposed to saying something like "patient centered" or "personalized medicine" -- or simply "satisfying the individual patient's needs." The phrase begs a question -- what kind of care was being provided before a focus group approved the use of these words -- imprecise medicine?
Doctors also experience their own problems with definitions. Their associations, administrators (and the insurance companies with whom bureaucrats have formed alliances) spout inanities like "choosing wisely," "evidence based," "meaningful use" and "unnecessary" when they describe their new vision of health care. This absurd passive-aggressive Orwellian language implies that the doctors were somehow negligent in their duties in the first place, were not making the right choices, were not relying on scientific facts or were wasting time and financial resources in their greedy pursuit of a buck. These shameless slanders by organizations against their own membership are appalling!
Organizational names within the health care system also hide the meaning and intent of the bureaucracy. In the United Kingdom, the Disneyfied-named NICE (the National Institute for Health and Care Excellence) decides who gets care and what type of care. One of the tools used is QALY (quality adjusted life years), an assumption based on average expected life and costs of treatment.
They sound harmless, so what is the problem? QALY has been used to deny care based on these averages and critically ill patients are often starved or denied water against their consent, all in the name of "quality" in the eyes of the bureaucracy.
Of course these administrators would not be treated this way. After all, some patients or treatments are equal, but some patients and treatments are more equal than others.
The definition of all of the words that relate to health care must not originate in an insurance company algorithm, politician's whim or an administrator's budget -- people who have never seen the patient -- they must be determined at the bedside of the patient in question. A doctor satisfying the individual's needs, who treats the patient as person, creates real "value." A doctor respecting their wishes, looking them in their eyes and showing empathy, treating them as an individual, providing medically justifiable care creates real "quality." And this value goes far beyond mere extension of life balanced against the cost of treatment, it encompasses what a patient can do with that time -- attend weddings, births and family lifecycle events that make life worth living in the first place!
All definitions of care must be clear, patient-based and science-based -- not politically-based -- in order to assure that those of us who are ill have access and choice to the right information and treatments at the right time.