The following letter was sent to the the doctor sponsoring the Brain Matters 3 international NeuroEthics Conference and several other doctors in attendance as well.
Dear To whom it may concern,
I would like to again thank you for bringing attention to the ethical dilemmas surrounding Functional Neurological Disorders. Of course I am biased, but I think it would be hard to find an illness or disorder with more unanswered questions.
Functional Neurological Disorder has a plethora of ethical issues around patient care, philosophy, research and representation. I am writing to highlight some of these and clarify the impact they have on patients, in the hope that they can be addressed as a matter of urgency.
First and foremost, this disorder has not yet been given a name acceptable to the various groups involved; nor will any medical specialty assume full responsibility for FND patients.
Omitting ‘Conversion Disorder’ from the name in the upcoming DSM-5, because there can not be clear evidence of relevant psychological stress ‘converting’ to physical symptoms, may be a step in the right direction. However, this disregards the fact that a true short-term conversion disorder does exist, with clear psychological components.
Listing Functional Neurological Symptoms Disorder directly with illness anxiety and removing the need to establish whether someone is feigning or not will truly be a detrimental decision. I find it perplexing to diagnose a patient with a disorder that has even left the medical community mystified for decades, and then label this patient with illness anxiety if they choose to do research in order to grasp an understanding of their diagnosis. I have yet to hear of any other ailment where a patient is not encouraged to educate him or herself and is in some cases actually discouraged. Unfortunately this information, or lack thereof, is more time consuming because of the limited amount of patient information that is rarely updated. As of now, the government-supported websites have very little information and what is available is desperately lacking current findings.
My point is illness anxiety has no more to do with Functional Neurological Symptoms Disorder than with any other disorder nor would it necessarily produce similar physical type symptoms. I am not surprised that many with a diagnosis of FND would have illness anxiety given the severity of physical symptoms. Further adding to this confusion is the little information given at time of diagnosis because of the lack of understanding by many physicians who are labeling and treating them; however, the fact comorbidity exists gives little to no relevance as to anything else they have in common, which is also part of my issue with factitious disorder.
If an individual is feigning they can have any symptom they want. The fact is, if they are going to this extent for some kind of secondary gain- they do have psychological issues that need and deserve attention. They also deserve to be treated with respect. Yet, again, this has no more relevance to FND than any other illness.
My point does not stem from disdain for illness anxiety and Factitious Disorder, but for the reasoning that it may insinuate that those with FND are more prone to either disorder; therefore, further causing confusion and misunderstanding to a disorder that is already struggling to be clearly defined. Neither illness anxiety nor Factitious Disorder has any more to do with this illness than with any other. Listing them together is insinuating that is indeed the case.
Categorizing these disorders together in the DSM-5 will have a gross negative impact on research funding, patient care, and benefits paid or not paid. It will undoubtedly force those who had insurance, but can no longer get care approved, to shift the burden on to the government (i.e. Medicaid).
This particular re-listing by the DSM-5 somatic work group lacks evidence to support their change rational and to target a patient group that has little to no doctor support or representation seems unethical indeed.
Which brings us to what I believe to be the real “crisis for neurology”? It is a disheartening fact that many of those suffering from a Functional Neurological Disorder are comparably debilitated to people with Parkinson’s, yet are left without effective treatment plans, or medical professionals willing to take responsibility for their care.
Many have endured appalling treatment at the hands of physicians who do not understand the condition; therefore, the doctor cannot accurately explain it to the patient whom they have just diagnosed. No one should have to wonder if they will be treated with respect when they enter a medical facility regardless of diagnosis.
The most widespread (and damaging) fallacy is when doctors tell the patient, their family, and/or support system “if they accept this diagnosis, their symptoms will probably go away naturally”.
This statement has a devastating impact on patients: it fills them with confusion, frustration, disbelief and self-doubt. They are left thinking that if they do not get better then it is somehow their fault; they are not trying hard enough.
Furthermore, this statement can cause a rift between patients and their families, when relatives accept the doctor’s advice.
Patients go into the emergency room because of physical neurological complaints. They come out with functional symptoms and psychiatric disorder and possibly a new-found depression; but sadly, the ethical dilemmas do not end there.
The fact such little research has been done – and that most of it has focused on the same area – is a serious problem.
Research is imperative if there is to be a future with an effective treatment plan. I have concern over some of the practices involved in how research is focused and abstracts are possibly chosen. What information is being used and how it is obtained. I wonder if results can ever be completely free of bias, and whether researcher influence then leads to further distorted protocols.
The primary focus has been to link functional neurological symptoms purely to a psychological etiology. Yet, we as a society have made little progress and are nowhere closer to an effective treatment plan than Freud himself. Research done with such focus and lack of broader perspective I fear may further steer this ship that is quite possibly slightly off course further in the wrong direction. Has there been protocols omitting the psychological aspect all together and thinking outside the box completely? Empirical based research has the opportunity to shed new light on old ideologies if they are not distracted by previous tainted biases.
I am then concerned as to whether research teams are getting the most pertinent information. As a patient it is difficult to know what symptoms are applicable and how to then best verbalize, so others understand. Also, are researchers obtaining the most valuable information when an interview is question led? A researcher never goes into a study blindly. The scientist begins with an objective to prove if their hypothesis is true or false. One could assume the plausibility of the outcome if it is the focus. Therefore, an unethical bias has already emerged before the work has even begun.
From there, are ethical dilemmas emerging from unintentional documentation that is subjective but presented as being factual?
I understand the importance of taking objective and subjective data in assessments of a patient to make a diagnostic judgment. However, how does documentation escape the unethical biases of researcher opinions? It is only human nature to see things from your own personal perspective. I have personally found on several occasions where a doctor’s opinion has been charted as factual information. Because of my personal experience I see a clear need to distinguish between objective and subjective findings.
Years later as this data is being further evaluated, is opinion based material painting a picture for the next doctor? Are researchers now viewing subjective notes with an objective view?
Would better patient-doctor collaboration be a simple but effective tool that could prevent misconceptions and protect all parties involved and their vested interests?
One can’t help but see as all these questions and issues add up- Could this explain why a disorder that has actually been equivalent to MS in patient numbers is still – after over 100 years – vacillating between two fields of study, yet falling into the abyss? I do not mean to be overly critical and I am very thankful for any research that has been done or is ongoing. People are suffering because of neglectful care and ineffective treatment plans which may get worse as managing Functional Neurological Disorder patients becomes a costly government issue instead of a focus for quality care.
The ambiguity is leaving patients searching for medical professionals to treat them and monitor medication. At what point should a physician intervene with drugs to best control symptoms? We have established a moral code of conduct for suffering animals, yet functional patients are sent home time and time again with bodies that are spasming out of control and in horrific pain; many without even a follow-up appointment or a treatment plan.
Is lack of knowledge making doctors feel it is unethical to take on a patient they know they are inadequately equipped to help? If so, this leaves a vast gap as to who should be monitoring the overall health of functional disorder sufferers.
For a disorder that has not had proper research, is it ethical to withhold medications that may be useful?
Like all areas of science there is always a need to examine and explore the possibilities of how we are stifling ourselves. When have we become so focused that we are blind to the overall picture. What pressures do new and upcoming researchers have to follow in the footsteps of their predecessors because they do not want to be seen as disrespectful?
As patients we may see ethical issues from a different perspective. Labeling, discrimination, research, and treatment are at the top of our priority list. I acknowledge this may not be the same list or same prioritization as you and your colleagues may have, so, I ask:
Can a group ever get a diverse overall dialogue like you had suggested you were hoping for when most perspective is from the same point of view? As medical professionals I am sure the amount of patients with Functional Neurological Disorder that have been seen combined is staggering.
However, I can’t help but wonder the advantages there may be, if lines of communication were more open and freely utilized. As sufferers we are capable of learning what scientists know or how they comprehend this disorder. However, others are at a disadvantage because they will never fully comprehend nor feel this disorder coursing through their veins and will not truly know what sufferers feel when they are free of critical and clinical biases.
I do realize the study of neuroethics encompasses more than just patient care, but because of my personal interest it is what and who I represent.
As you discuss the ethical dilemmas over the course of a few days, please know I do not mean disrespect nor to sound ungrateful to those who dedicate their lives to science. I hope my thoughts and insight on these issues, which I and many others live with everyday, will help bring just a little more perspective from another point of view.
I wish you all the best in a successful and productive meeting. If you did receive funding to have sessions taped I would very much be interested in obtain copies and would appreciate if you could forward the information on how I may acquire these.
I would like to highlight a fairly recent article that I believe shines a light on ethical research biases. As I read this short article I found it plagued with many comments based on opinion and subjective data. This lack of factual statistics and the small amount of actual PNES patients involved left more questions than answers. Not only did the doctor lose any creditability he had, these comments also reflected poorly on the Institution and on research in general. I do not think this is always the case nor do I think it is typical, but I believe the goal should always be to work towards creditable and ethical practices.
The following has all been copy and pasted directly from the article itself.
By Rick Nauert, PHD Senior News Editor
Reviewed by John M. Grohol, Psy.D. on April 12, 2012
‘People at risk for pseudo-seizures are typically highly suggestible – which is why physicians often have tried not to publicize or draw attention to the condition.’
‘Along with seizure symptoms, patients with PNES often have other problematic behaviors and unstable relationships. Many remain occupationally disabled and have high health care expenditures, even years after the non-epileptic nature of their events is identified,’
‘In this new study, a team of neuropsychologists and neurologists at the Johns Hopkins University School of Medicine suggest that people with PNES don’t necessarily experience more frequent or severe stressful events than people with epilepsy or neurologically healthy people. However, they seem to lack effective coping mechanisms necessary to deal with those stresses and feel more distressed by them.’
‘These patients behave as if they have an organic brain disease, but they don’t,” said Jason Brandt, Ph.D., the study’s senior investigator. “And it turns out that their life stresses weren’t all that high, but they’re very sensitive to stress and they don’t deal with it well.’