"Looking Back": Clinical Review and Reconsideration

It is only natural, if one has a memory,  to look back with the remembrance of the event and think to oneself whether the decisions made and the outcome of the event could have turned out better if the issue was thought out and acted upon in a different way.  And it is only natural but also part of the professional learning experience for a physician to look back, reconsider and contemplate  a different approach to the diagnosing the illness, explaining the findings to the patient, presenting to the patient professional advice and then different decisions made with the patient.  Looking back may expose to the physician mistakes made, mistakes which can be prevented in future experiences.

 Mistakes can involve errors of knowledge or related to assumptions regarding the clinical condition but also about the patients themselves.  Mistaken conclusions by the doctor about the his or her patient may arise because of insufficient time taken with the patient to obtain, beyond the biologic aspects of the patient's illness, knowledge of the psychologic and social aspects of the patient's life and the impact of the illness on it.  The patient who is described as "non-compliant" toward diagnostic procedures or treatments, after the fact, may have had issues, which could be considered and attended to earlier, but unknown to the physician because of inadequate history taking and earlier discussion with the patient.

Errors or delays in making proper diagnoses can often, on looking back, be related to assumptions based on the medical literature or the physician's experience with patients bearing similar patchwork of symptoms.  It is much easier to base a conclusion on similarities to other cases than to start out with the approach that the diagnosis of the present patient will be unique and require more special and intensive intellectual attention.  Consultation of cases with specialists or others with assumed "more experience", especially informal "curb-side" consultations though often helpful to the physician, may provide inappropriate conclusions since the specialist has not had the opportunity to talk with or examine the patient of the case.

Treatment of the patient's disorder may be misguided by erroneous "it has always worked before" assumptions but also by paternalistic "this approach is the best for the patient" with some alternate treatments not presented to the patient for the patient's consideration. 

Failure of correct diagnosis or failure of treatment or frank "medical/surgical mistakes" is always an underlying consideration by all physicians but, at times physicians may have become unreasonably "optimistic" regarding diagnosis and treatment.  When this optimism fails in results, as it can, there follows much personal soul-searching and "looking back".  Yet, "looking back" really should be the final professional act in cases that "go well"  as those that don't since every case should be a professional learning experience and, without "looking back", looking forward may be missing something important for the physician  to know and, in fact, leave the physician misguided.   ..Maurice.

Graphic: Two Deer Looking Back--photograph taken by me at Red Rock State Park, Sedona, Arizona, June 2013.

The Ethics of "Gawking" in Medicine

The following original article which I wrote and was published today at the Bioethics.net website is reproduced here with permission.  ..Maurice

06/20/2013

THE ETHICS OF “GAWKING ” IN MEDICINE

Maurice Bernstein, MD

Gawking, defined in Merriam-Webster dictionary  as “to gape or stare stupidly.” It is the “stupidly” which I think sets the ethics of the behavior.  The “stupidly” can represent more than some ignorance of what is being observed but also a lack of true purpose at the time of the observation for either understanding or even participation.  Gawking is directed primarily for self-interest of the gawker and for no other purpose.  A general example of gawking can be given as motorists stopping briefly at an automobile accident simply to observe the trauma but not with an intent to provide assistance.  A more specific example of gawking was described in the Associated Press article November 12 2012 in the aftermath of Hurricane “Sandy”:

Garbage trucks, hulking military vehicles and mud-caked cars move slowly through a Staten Island waterfront neighborhood still reeling from Superstorm Sandy’s storm surge. Then comes an outlier: a spotless SUV with three passengers peering out windows at a mangled home choked with sea grass. Residents recognize the occupants right away. They’re disaster tourists, people drawn to the scene of a tragedy to glimpse the pictures they’ve seen on television come to life.

So then, in general, what has ethics to do with gawking?  Well, one can say that gawking having only to do with self-interest and absence of benefit or consent by those being gawked can be deemed unethical.  Considering the ethics, a more benign example would be a gentleman gawking at an attractive lady on the street.  For whose interest is the results of the gawking? Of course, it is that for the gentleman.  What benefit is surreptitious gawking for that woman? None, if she is not informed and perhaps some, if she was…but that would depend on her interpretation.  Does it make any difference, though, to the lady not to be informed?  Well, she can’t complain since she was walking out in a public place, so the gentleman’s gawking has really not produced any injury and which would be strictly termed unethical.

However the example of gawking which could be looked upon as unethical is, as in the case of observing the harm to others, such as the automobile accident or being a “disaster tourist” such as the Sandy experience is where that the ethical principle of beneficence is missing.  Instead of a humanitarian “Good Samaritan”  action on the part of the gawker to provide “good” to the harmed or injured, the behavior is strictly self-serving. That is unethical.

So now, what about gawking and its ethics in relation to the medical profession?  The duty of the medical profession is essentially to the benefit and good for the patient among other ethical principles and along with the attempt to preserve  the decisional autonomy of the patient.  Within the United States, The Health Insurance Portability and Accountability Acts (HIPAA) deals with assuring confidentiality of patient historical information (that which is spoken or written) but there are no laws of which I am aware which regulates how a patient’s physical body, during clinical evaluation, procedures or surgery can be maintained as private and away from the unwanted eyes of onlookers about whom the patient was unaware and had not given consent. These onlookers have been termed  “gawkers” by the patients on finding that they had been present. All you need to do is go to my “Bioethics Discussion Blog”(www.bioethicsdiscussion.blogspot.com) and read the comments by patients written over the years to my many threads on “Patient Modesty” for confirmation of the application of this expression.  And who are these “gawkers”?  The name has been applied to medical students, nursing students, technicians, medical industry representatives and other “visitors”, none of whom were consented to be present by the patient and who are standing around and not specifically contributing to the care and attention to the patient but looking at the patient’s body for their own various interests.  Yes, the patient’s physical body, uncovered to various degrees along with the observation of the activities of others attending to the patient may be of value to those simply “looking on” even beyond some personal prurient interest. However whatever the value to the gawker or the eventual benefit to others, the fact that these individuals have not been directly accepted to be present by the patient and not directly involved in the patient’s care makes their gawking unethical.  As far as some patients are concerned “gawking” on them is more than “staring stupidly” but “staring without informed consent.” What these patients would want is talking consent in place of doing gawking.

As a patient, what would be your opinion?

"Nudging" Informed Consent Toward One Direction

 

You  enter a grocery store and as you pass through the front door you find a beautiful display of luscious  looking fresh fruits.  You came to the market to buy some spare ribs and wine for supper but that is way in the back of the store.  Prior to entering the store, you had only the ribs and wine on your shopping list but now you find yourself buying a few pounds of the fruit. Moving back through the market, you find the display of bottles of wine. You find that the more expensive and imported wines are displayed at eye level and the cheaper, local and less noteworthy wines are standing on an elevated shelf, accessable, but you have to reach up for them. Might you be tempted to take one of the wines at eye level? Maybe not, but then you hadn't even previously considered buying an expensive wine for this evening's supper. What I am presenting here as examples of how the grocery market can affect your decision-making by creating

"nudges" to change your shopping list decisions. This example of ways to affect decision-making in the grocery decision-making also can occur in the challenge of making your informed consent medical decisions.

The June 2013 issue of the American Journal of Bioethics has one of its target articles and a number of open-peer commentaries just about "nudging and informed consent". If the healthcare provider presents to the patient the information needed for the patient to make informed consent but yet sets a particular detail "in the front of the store" or "on a lower shelf", representing how the facts are presented to the patient, the provider may be essentially "nudging" the patient toward one decision in place of the other but without denying the patient any loss of autonomy to select either to consent or dissent for any of the options presented. The nudging can vary in intensity from something like a very slight nudge to a nudge which might be considered almost a "push".

To demonstrate directly to my visitors some examples of slight nudges as presented in one peer review article in that journal "Nudging and the Complicated Read Life of "Informed Consent" by Charles Douglas and Emily Proudfoot. I would like to present their two "scripts" which they presented to patients in a study to determine whether a nudge in presenting the facts could affect the patient's decision-making. 

Pretend (and I hope it is only a pretend) that as a woman you are concerned about a breast lump or an abnormality which was found only on a mammogram and that may be a cancer. The doctor is aware that there are two approaches in management which are available: perform a "thru the skin" biopsy of the abnormality which involves at the most only a little local

anesthesia with virtually no risk and present results, if negative for cancer, would still leave only a less than 1% chance that a cancer would be missed but the lump continued to be observed  if no cancer was  or to fully excise the

 abnormality under general anesthesia which would carry the risk of anesthesia and the surgery but provide 100% confidence regarding the diagnosis of the lesion and the lesion would have been removed. The patient can be told the facts, the procedure, risks and conclusions in each of two ways. either may represent a nudge in one direction or the other. My own examples of how the facts could be presented as based on the article would be:

1)  "You may have the lump simply biopsied under local anesthesia with negligible risks from the procedure rather than surgically removed under general anesthesia with its known risks, and the results of the biopsy if negative for cancer would be correct over 99% of the time and missing the cancer less than 1% of the time, I would consider that an acceptable risk. After the biopsy, if negative for cancer, the lump will be continued to be observed"

2)"To have the lump biopsied there would be very little risk from the procedure and a less than 1% chance a cancer would be missed. However, you may have the lump fully removed but with the known risks from the general anesthesia and surgery.  If you want to be 100% certain regarding whether the lump is cancer or not, then we should excise, remove it."

Notice that the facts are presented in both examples for the patient's education and decision but with a difference in the wording and emphasis.  If you were only presented with disclosure #1 how would you respond? Would you agree for a biopsy? If you were only presented with disclosure #2 how would you respond? would you agree for an excision?

Do you see the "nudging" of the patient in one direction or another in each of the patient presentations?  Do you think it is fair, that it is ethical for a doctor to tenderly direct (nudge) the  patient in one direction or another based on the doctor's professional opinion as to what would be in the patient's best interest. Have you, as a patient, felt nudged by your doctor?  ..Maurice.

Graphic: From Google Images.

   

Clinical Research:Patient-Centered Goals:Set by Who?: The Patients!

:

It was very interesting for me to read a Viewpoint article in the June 12 2013

issue of the Journal of the American Medical Association (JAMA). It has to do

with medical research and the role of patients in that research. The article is

titled "Patient's Responsibility to Participate in Decision Making and

Research" by Tinetti and Basch. One always thinks that the role of the patient

in medical research should be simply as the "guinea pig" or subject of the

research and that the creation and development of the research project is the

job of the research scientists and physicians. It is these professional folks

who are known to understand the science and the missing information that needs

to be discovered and they are the ones to be involved in deciding upon what and

how and to what ends a medical research study should be designed.

However, on thinking about this a bit further about how medical (also called

clinical) research is to be initiated, one should ask the question as to whose

primary benefit should the research be directed.  One could say that it is to

increase the pool of medical knowledge from which physicians can access in

order to treat all their patients. A more cynical answer would be that the

benefit can be self-serving and really provide a significant benefit to the

professional both in terms of satisfaction of personal inquisitiveness and, of

course, the opportunity to advance one's professional career. The article, on

the other hand, stresses the importance of considering the patients themselves

as the beneficiaries of medical research and as such it should be the patients

themselves who should be involved in setting the basis for a study and involved

in establishing what should be the study's goal. After all, it is the patients

who can provide input into what patients want to get out of the conclusion of

the research. This input could direct the research scientists toward finding

results which would be more acceptable and needed from the patient's point of

view.

Beyond the goal of the study, since the patients are the "guinea-pigs" it would

seem ethical to allow some patient autonomy in the details of the project to

have a say with regard to how they, as subjects, be utilized and more

comfortable with the project. It is important to remember that, in many aspects

of the study, there is a declared responsibility of the patient to strictly

follow the directions set by the researchers and continue their participation

since otherwise the study may be flawed or even lead to its abandonment.

Therefore, patient participation in a study should extend beyond being solely

the subjects to be experimented upon. As the title of the JAMA article suggests

beyond being the subject, shouldn't patients in general be required to

participate in medical research? However, also as the JAMA article implies that

though there is general consensus about the responsibilities of patients to

request information from physicians if they don't understand, participate in

decision about diagnosis and treatment options and agree to adhere to agreed-on

treatment program, "the responsibility of patients to participate in research

is less clear than their responsibility to participate in their own care." One

argument that could be made for patient responsibility would be that "patients

have the duty to participate in research because everyone benefits from the

results and the no one should be a 'free rider'"

Though, ideally, to achieve an effective goal of "patient-centered" healthcare

and decision-making, the JAMA article concludes that to reach that goal

requires that "patients let clinicians know their priorities, understand which

strategies are most likely to achieve their priorities and participate in

research which generates this evidence."

I would be interested to read what my visitors think about the role of patients

to become a study research subject but also contribute to the development of

patient-centered goals for the study.  ..Maurice.

Graphic:  From  www.asbestos.com via Google Images

The Disabled: Ethical and Practical Issues Yet to be Resolved: What Can You Find Out and Tell Us About Them?

I have developed a number of threads on this blog presenting and discussing issues that deal with the disabled person such as the following:

"Thinking and Writing about the Disabled:Courageous or Burdened"

"Eugenics,“Feeblemindedness” and the “Droolers”: Stories of Stereotyping andDiscrimination"

Disability RightsGroups: Sacrificing the Individual for the Agenda?

The MentallyDisabled Women: Sterilization at the Request of Others 

“Better Dead ThanDisabled”: Bad Date and Bad Balance 

The Ashley Caseand What is Ethical?

Refusing to Cast aDeaf Ear to the Ethics of Maintaining Deafness within a Deaf Family

Many of the issues presented in these threads over the past number of years are still not  settled and some, of recent interest have not even been discussed here as yet..

Some of the issues still undecided by ethicists but also by the public are listed below.  I have not performed a library or Google search regarding the current facts regarding the status and full arguments for or against these issues to present here on my blog.

I thought it might be interesting to have my readers do the research on one or more of these topics and write a comment here about the arguments and status of the debate as researched.  On the other hand, based on their experience or current knowledge, some visitors might like to just write about their own opinions regarding any of these issues.

I hope my visitors don't think that I am just lazy making this request. I'm not. I just want to see, through this experiment how others discover and present the facts regarding these issues which are very important both to the disabled person, that person's family and to the society in general.  So go and Google the topic, learn and return and tell us what you know. ..Maurice.

The use of bionic eyes

The use of cochlear implants

Prosthetics for everyday use or competitive sports

“Normalizing” surgery for individuals with Down Syndrome

Limb lengthening surgeries (e.g., for individuals with achondroplasia)

The use of growth hormones

The use of “neuroenhancement” drugs (e.g., to improve focus, memory, or other cognitive functioning)

Laws that influence decision making on behalf of disabled children (e.g., the Swedish law requiring parents to consult with member of the Deaf community prior to agreeing to cochlear implant surgery for their child)

Growth attenuation procedures

Familial or community pressure to modify or refuse modifications of one’s body

Graphic:  Classic "the disabled" signage from Google Images