ARC (ARACHNOIDITIS) NEWSLETTER
Volume 3, No.2 Summer 2003. Published by the ARACHNOIDITIS FOUNDATION, Inc
A Non-Profit Organization created for the Study of the Causes, the Diagnosis and the treatment of ARACHNOIDITIS
EDITOR’S PAGE
The latest crisis in the American Health Care System is supposed to be the exorbitant increases in malpractice insurance policies. Costs which have brought physician’s pleas for help. However the issues involved in the latest fumble on the manner in which patients are cared for has deeper roots than what appears on the surface.
DOES ANYONE CARE ABOUT THE PATIENTS?
The latest “malpractice crisis” has been provoked by an exorbitant and unexplained increase in the policy premiums of doctors’ malpractice insurance coverage. This has been justified, supposedly, by the stratospheric awards given to plaintiff victims of medical malpractice. However, these issues deserve a greater scrutiny into the factors involved to truly define what else is in play to understand that ultimate consequences of what doctors are asking state and federal legislators to do.
Expert financiers have stated that a major cause for the insurance company losses has been attributed to bad investments and the down spiral of the Stock Exchange, as insurers were heavily involved in stocks and bonds. So they raised the doctors’ premiums and reduced the amount of coverage.
Another significant increase in expenses to Insurance Companies is the cost of litigation; whether they win or loose the case in Court, the lawyers always win, as they like to litigate every case, and they charge royally for their hourly service. Plaintiff’s lawyers used to accept 33% of the award if they won, now they pass all expenses of litigation to the clients’ fees and add 30% to 40% of the awards. Settlements come late in the case, when plaintiff and defense lawyers have already charged their clients thousands of dollars.
So doctors have protested, plead to legislators, closed practices and even conducted minor strikes to appeal for sympathy to the public; in over 20 states caps for pain and suffering have already been placed at $250,000. In other states caps of $500,000 are being considered.
While all this is going on, the Institute of Medicine comes out with a report that over 1000 patients are dying daily from medical errors. Where are the patients left? Over the next three newsletters we would like to discuss these issues in depth, as they refer to the causes of Arachnoiditis.
Due to the fact that the most common causes of spinal arachnoiditis (ARC) are interventional procedures of the spine, whether at the first or second laminectomy, during a spinal fusion, from spinal or epidural anesthesia, epidural blood patches, a diagnostic myelogram, spinal tap or an adhesiolysis procedure, the medical profession has not only turned a deaf ear to reason on the prevalence of this disease, but we are in some cases in a phase of denial in which some do not even recognize its place in the echelon of neurological diseases. They would be even less willing to accept that it occurs in some cases as a complication of an operation, an anesthetic or diagnostic radiological procedure. .
Contrary to statements made by some of my colleagues and announcements by certain health care facilities, physicians make mistakes just like any other profession.
However, in each medical specialty there are certain guidelines to follow for each procedure, how to reach medical decisions and what sequence to follow in order to arrive to certain diagnosis by a process of elimination. Not being prepared, not clearly equipped, not evaluating patients thoroughly, taking shortcuts, bypassing safety steps, doing a poor selection of a patient for certain operation or vice-versa, conducting an operation carelessly, taking unnecessary risks, or not being available in moments of need have brought about complications that could have been prevented ensuing in catastrophic outcomes.
Since the American Medical Association, the State Medical Boards, the Specialty Boards and the Medical Schools have given mostly lip service to this very critical issue other authority groups have decided to act. Though to err is human, specifically while providing medical care to patients, errors may result in deaths, permanent injury, temporary disability, and pain; not to dwell on the eventual economic loss from the unplanned leave, medical costs that the injured individual will require, the loss of income to his/her family unit and the detriment to their quality of life.
In 1999 an independent government appointed group of distinguished physicians, scientists, economists, nurses, lawyers and administrators labeled as the Institute of Medicine Committee on Health Care in America produced a report entitled “To Err is Human: Building a Safer Health System” in response to insistent complaints based on concerns expressed by a number of organizations including patients, healthcare workers and consumers.
One of the committee members, R. Leape, MD, claimed that studies including large numbers of hospitalized patients indicated that in the U.S.A., one million patients are injured per year, of which 100,000 die as result of errors in their care (available in www.apa.org/ppo/science/leape.html ). Mind you they are only talking about death rate, the morbidity (non fatal complications) rate must be enormous. Some of the many questions (not answers) that the Committee came out with included:
- Why is health care so hazardous?
- What needs to be done to improve safety?
- Why are patients not told of the real risks?
- Why diagnostic tests were not done in time?
I am certain that many ARC patients could answer these questions at length, however we have to look at the “health care” concept in general, first and then answer some of these questions as they relate to ARC, in particular.
One of Dr. Leape’s recommendations to the U.S. Senate Committee is that since we do not have a precise idea of the incidence and extent of the problem there is need to review the manner of how “incidents” or “errors” are reported. Due to the “punitive” aspect of how Boards, Hospitals, Courts and other governing groups now react physicians are reluctant to voluntarily report or admit to wrongdoing. In all reality, not all of these errors are “medical,” but the term has been applied to errors by nurses, pharmacists, therapists and other healthcare workers, as well. There is no question in anybody’s mind that no doctor, nurse, pharmacist or therapist wants to deliberately hurt any patient.
The Institute of Medicine recognizes this premise too and have concluded that “errors” are caused by “faulty” systems, processes and conditions that lead people to make “mistakes.” This is as vague of a statement as you can compose.
The intense and long training that most health care providers undergo is not enough to ensure complete safety. They need more information and definitely patients need a great deal more information, too about the indications and outcomes of procedures they are subjected to.
In the forthcoming issues of this “Newsletter” we will discuss many of the related issues in the chain of events that eventually may lead to ARC.
The first issue is: PATIENT INFORMATION AND REAL INFORMED CONSENT.
Undoubtedly access to the internet has given patients a remarkable source where to acquire information on medical illnesses, procedures and their possible outcomes.
Unfortunately, not all the available information is correct, as a matter of fact, a lot of it is misconstrued or is composed in a certain manner to misinform patients or to inform them in such a way that it would entice patients to sign up for “such and such” procedure.
Remember no two cases are the same and as recently published in the New Eng J of Medicine (2003:348:25) there is a great variability on the threshold of pain among individuals. This has been confirmed in a study by Granot et al (Anesthesiology 2003:98:1422-1426) in patients having C-section. So, what works for some patients does not necessarily work for others and that explains why some patients can handle their ARC without opiates and in others 100mg of morphine/day is not enough, besides the extent of the lesions is also very variable. Therefore, recommendations from patient to patient may not only be ineffective but in some cases it may prove to be right out dangerous. Please, not only get informed but get PROPERLY AND FULLY INFORMED.
In reference to the spine, the best chances to correct whatever problem brought the back pain is at the first operation. From there on, the likelihood of being free of pain and to fully recover decreases exponentially, another operation (laminectomy or fusion) rarely makes the pain disappear.
What to do:
a) Make certain that a proper and definitive diagnosis is achieved.
b) Inform yourself on who is the best surgeon in the region; do not necessarily stay in your town for convenience.
c) Ask for incidence of successes and complications; talk to operated patients.
d) Do not rush into it, if you think you are hurting now if the operation fails you have no idea how painful it will be.
e) Ask if your pain is going to be relieved 50%, 75% or 100%. Make sure you get a straight answer.
Laminectomies done to correct a herniated disc have a much lower chance to succeed in relieving the pain if any of the following are present.
a) lumbarization of S1
b) sacralization of L5
c) spinal stenosis
d) short pedicles
e) if you smoke
f) weight exceeds 30% of expected
g) scoliosis
h) spondylosis (facet joint arthritis)
i) spondylolisthesis (slipped vertebra)
Remember in the majority of cases of low back pain, patients seek medical care mostly because of the pain; whatever operation or treatment has to have as main objective “the relief of the PAIN”. Removal of the herniated portion of the disc, a well healed fusion or facetectomy do not mean much to the patients if pain is not relieved. The same premise must be applied before pain relieving procedures (epidural injections, adhesiolysis, facet joint injections, etc.) they should relieve the pain, even if it is temporary (weeks or months).
T. Nolan an expert on quality improvement identified three prerequisites for improvement.
1. WILL
2. IDEAS
3. EXECUTION
WILL implies ardent desire, need of recognition and effort. It does not happen by chance. If the threat of malpractice is removed what is left to encourage healthcare workers, organizations and administrators to improve it?
IDEAS are required because when the need to change old methods and costumes is recognized someone has to have the incentive to come up with solutions; moreover organizations and governmental agents have to have the wisdom and revenues to act on those ideas.
EXECUTION: Then, when the many factors that cause deaths, sores, hypoxia, cauda equina syndrome, infections, heart attacks, strokes in hospitals are identified someone, somewhere has to have the integrity to accept and the authority to change the conditions and allow for change to happen.
If the insurers and doctors get their way fewer lawyers will accept to litigate cases of patients injured by negligence. Herein, we are getting mixed signals. If the concern, or fear for malpractice litigation is removed or at least decreased significantly and very little has been done to reduce medical errors since the I of M report came out in 1999, it seems that the incentives to reduce deaths and complications from errors of medical care are removed. That leaves patients not only in limbo, but half way to purgatory, because their incidental injuries and deaths would be part of supposedly more realistic statistics but they will continue to suffer pain, disability, loss of income, greater medical and hospital costs and in some cases death; with little chances to be compensated for them.
Physicians continue to be in denial, as noted by Blenden RJ et al (Views of practicing physicians and the public on medical errors N Eng J Med 2002:347:1933-40) “displaying an arrogant refusal to accept the extent and frequency of medical errors, even when they admit to mistakes in the care they themselves or their relatives received.” Therefore, instruments or sponges will be left in the abdomen, the wrong intervertebral space will be operated, wrong information will be passed on to each other, referring physicians and medical societies will place road blocks to improvement, so patients will not be better off.
The main objective “avoid patient injury” (primas non-nocere) has lost its primordial place to carelessness, “fast tracking,” early discharge and pharmaceutically sponsored studies. If it is true what DM Berwick wrote (Errors today and errors tomorrow, N Eng J Med 2003:348:25-27) reminding us that the I of M’s estimated that 100 patients die every day in USA hospitals, the incidence of non-lethal injuries is accepted as being far more common (most patients with ARC included), however no one knows precisely how many.
For example, the false concept that surgery and anesthesia are completely safe may be a myth as shown by Lagasse RS (Anesthesia Safety: Model or Myth. Anesthesiology 2002, 97:1609-1617). Questionable statements had given the impression of low death rate (1:260,000) in anesthesia (BMJ:2000:370-388). This has lead the public to submit themselves to repeat operations without questions, with minimal concerns, with little hesitation, Lagasse has boldly challenged those numbers in an elegantly done study suggesting that deaths occurred in one out of every 60,000 anesthetics, emphasizing that there are risks specially for those patients with concomitant diseases.
For non-fatal errors, a typical attitude has been taken by those analyzing the incidence of spinal hematoma after the use of low weight heparin given IV to prevent the rare complication of pulmonary embolism occurring after deep venous thrombosis. These authors are willing to accept the possible risk of requiring to have an emergency laminectomy (if diagnosed in time) to evacuate the collection of blood in the bony constricted space of the vertebral canal, which has left many patients paralyzed or with cauda equina syndrome, for the convenience of given an epidural instead of a general anesthetic (Anesth Analg 1994:179:89-93).