The Importance of Malaise...

About a year ago – a good friend of mine shared his observations about death and dying. 

“I have known 5 people who told me that they ‘felt the worst they had ever felt in their life’ and by that afternoon – they were dead.”  The “people” were all men.

He went on to describe what happened to our long-time mutual acquaintance and what he said on that fateful morning.  He described a man who went to work at a local factory despite his wife’s suggestion that he stay home and see a doctor. In every case the “worst I have ever felt in my life” predicted death in a few hours and did not deter these men from their usual daily routine.  Most of these men died of heart attacks.  They had atypical symptoms rather than chest pain – but my friend is not a physician and was not interested in the details only what they all said on the morning of their deaths.

The only time I felt that badly was when I sustained a ruptured and gangrenous appendix at age 18.  I had a very complicated course that included a Penrose drain being placed in my side to drain the remnants of the necrotic appendix. Even as I was healing, I felt horrible. I felt so badly that I did not care if I lived or died at that point. I was not depressed, nauseated, or in pain – just a very intense sick feeling.

That may be why I have had an interest in malaise as a syndrome.  I equate malaise with flu-like illnesses and that feeling you get from a severe case of the flu or flu-like viruses.  I had malaria once back in the 1970s and was very ill for several days.  That bout of illness was characterized by low energy, fever, and severe chills associated with the fever.  I can remember crawling across the floor of my house draped in a sleeping bag and into a tub of hot water just to warm up.  That was about 6 years after the appendicitis and the disease features were clearly different, but again not nausea, depression, or pain. 

Steadman’s medical dictionary defines malaise as:  A feeling of general discomfort or uneasiness, an out-of-sorts feeling, often the first indication of infection or other disease.  That definition captures the general experience but not the intensity.  I could tell that something was wrong in the early stages of appendicitis.  But in the space of 2 or 3 hours something was really wrong and the sick feeling was amplified a hundred-fold.  Are they both malaise?  Can malaise occur during a chronic condition – can you have acute and chronic malaise?  This semantic confusion may be why not many people seem interested in using the term. 

Interestingly there is a Malaise Inventory and it is in the psychiatric literature (1-3).  It was originally conceived by Michael Rutter as a measure of psychological well-being and the associated physical components.  It was adapted from the 195-item Cornell Medical Index Health Questionnaire.  The inventory itself consists of 24 self-competed questions and can be viewed here.  Many of the items (eg. Do you often feel miserable or depressed?) decrease item specificity.  Many of the items (eg. Do you often get worried about things?) are not specific for physical illnesses.  That may be why some authors found that psychological dimensions accounted for the more variance than physical ones.  It has generated very little research interest and is generally referenced once or twice a year in PubMed except for the year 2021 where there were 10 references.  In more recent studies it is used as a measure of psychological distress rather than malaise associated with a physical illness.

Why might it be important to have a more physically defined malaise? It could lead to earlier recognition of serious physical illnesses.  Based on what we currently know about pathophysiology – I would not be surprised if there were subtypes of malaise.  For example, the severe illnesses I have experienced were all most likely related to inflammatory signaling and the well documented effects of some of those molecules like cytokines. On the other hand, hyperadrenergic states associated with acute cardiovascular diseases could produce a different type of illness feeling.  We are generally limited by knowing the possible presentations (typical and atypical) to not miss a serious problem without reference to any non-specific illness feeling.  It may also allow for treatment of those associated symptoms. One of the striking features of the modern approach to appendicitis is rapid symptomatic treatment or pain and nausea. Are there better ways to treat acute infectious inflammatory conditions than NSAIDs and acetaminophen?  Are there better ways to treat chronic malaise?

My proposed analysis of malaise does not replace the need for common sense and recognizing the dangers of denial.  I am fully aware of the difficulty getting timely emergency care in the US health care system unless you need a trauma surgeon or interventional cardiologist.  But – if you are experiencing the “worst I have ever felt in my life” feeling you owe it to yourself and your family to get it checked out as soon as possible.  EMTs are called for a lot less.  I have talked to too many people who in retrospect would have called the EMTs instead of driving themselves to the hospital while they were having a heart attack.  

 

George Dawson, MD, DFAPA

 

References:

1:  Grant G, Nolan M, Ellis N. A reappraisal of the Malaise Inventory. Social psychiatry and psychiatric epidemiology. 1990 Jul;25:170-8.

2:  Rutter M, Graham R Yule W (1970a) A neuropsychiatric study in childhood. London, Heinemann.

3:  Rutter M, Tizard J, Whitmore K (1970 b) Education, health and behaviour. Longmans, London.

 

Photo Credit:  Eduardo Colon, MD - Thunderstorm over Minneapolis.

Supplementary 1: The Malaise Inventory

How are you feeling generally…

1. Do you often have backache?

2. Do you feel tired most of the time?

3. Do you often feel miserable or depressed?

4. Do you often have bad headaches?

5. Do you often get worried about things?

6. Do you usually have great difficulty in falling or staying asleep?

7. Do you usually wake unnecessarily early in the morning?

8. Do you wear yourself out worrying about your health?

9. Do you often get in a violent rage?

10. Do people often annoy and irritate you?

11. Have you at times had twitching of the face, head or shoulders?

12. Do you often suddenly become scared for no good reason?

13. Are you scared to be alone when there are no friends near you?

14. Are you easily upset or irritated?

15. Are you frightened of going out alone or of meeting people?

16. Are you constantly keyed up and jittery?

17. Do you suffer from indigestion?

18. Do you suffer from an upset stomach?

19. Is your appetite poor?

20. Does every little thing get on your nerves and wear you out?

21. Does your heart often race like mad?

22. Do you often have bad pains in your eyes?

23. Are you troubled with rheumatism or fibrositis?

24. Have you ever had a nervous breakdown?

 

Supplementary 2: 

I put the following questionnaire together based on some of my previous inventories for tracking flu-like illnesses.  

The Minnesota Malaise Index (MNMI)

1:  I have a fever

2:  I am fatigued

3:  I feel physically sick like I have the flu or another serious infection

4:  I have a difficult time concentrating on tasks and thoughts that I need to focus on and this is a new problem.

5:  I have a difficult time making decisions that used to be easy for me.

6:  I have a cough

7:  I have a runny nose

8:  My nose is congested to the point that it blocks or partially blocks air flow.

9:  I have a headache

10:  I have a sore throat

11:  My muscles are sore

12:  My joints are sore

13:  I am sneezing

14:  I am sleeping less than 6 hours per night

15:  I am sleeping more than 9 hours per day

16:  I have no appetite

17:  I have nausea, vomiting, or diarrhea

18:  I am in pain

19:  My activity level has changed and I am hardly doing anything

20:  Severity level:

A.       Some impairment in daily activity due to illness.

B.       Moderate impairment postpones desired activity.  No longer able to exercise.

C.       Severe impairment – need to rest due to illness and feeling physically ill

D.       Very severe impairment-cannot stand or sit due to severe illness and in some cases indifferent to living or dying due to illness severity

 

Supplementary 3:

Minnesota Malaise Index Tracker

 

 

 

 

 

Science and Politics…..With A Lesson from Psychiatry

 

I started reading this week’s edition of Science and was surprised to find several editorials about the relationship between science and politics. In addition to the editorials, news items like “Will Trump upend public health?” and “Trump picks lawyer for EPA.” Were no less alarming.

Marcia McNutt, President of the National Academy of Sciences wrote the first essay (3).  She correctly discusses science as a rational neutral process that by its very nature is apolitical.  She describes the peril of citizens ignoring scientific reality by quoting a 26% increased mortality rate in areas of the US where political leaders dismissed the importance of the COVID-19 vaccine.  She makes the point that science must define the body of information that policy should be based on - but it should not actually dictate policy.  She advocates for a role of listening to the affected people and fighting the disinformation that affects them.  Unfortunately, the process of active listening will not do anything toward fighting misinformation – especially when things get to the wide dissemination and meme stage. 

H. Holden Thorp, Editor-in-Chief of Science journals wrote the second essay (4) and it was more specific to the current political situation.  After commenting on the win for Trump he provides the following qualifier:

“Although his success stems partly from a willingness to tap into xenophobia, racism, transphobia, nationalism, and disregard for the truth, his message resonates with a large part of the American populace who feel alienated from America’s governmental, social, and economic institutions.”

The first clause in this sentence is accurate – but there are problems with the second.  Are xenophobia, racism, transphobia, nationalism, and dishonesty really symptoms of an underlying problem or do they represent the real problem of an opportunistic politician successfully scapegoating a portion of the population to gain the support of the electorate with these biases?  That has immediate relevance for the author’s proposed solutions of decreasing scientific misconduct to enhance public trust.  He points out that an animated defense on X/Twitter by scientists was not successful (how could it be based on the platform’s structure, biases and conflicts of interest?). He ends by correctly predicting that the attacks on science and scientists will go on unabated into the future and would like to see a response by the scientific community that makes them less successful.

The essay by Jaffrey Mervis (2) highlights concerns that research advocates have for the Trump agenda that is described at one point as defunding research to reduce taxes.  Any analysis of the tax plan shows that the savings are disproportionately awarded to the top 1% of wage earners.  A research physicist points out that there is no good news for science in the Trump agenda and that also translates to no good news to the tech industry that depends on government funded research for innovation.  Three areas from the Biden administration that may suffer are the Chips and Science Act, climate change, and research collaboration with China. 

The essay by Jocelyn Kaiser (1) focuses on the possible impact on the National Institutes of Health (NIH).  In this essay there is clear focus on Robert F. Kennedy, Jr. as a danger to the NIH and health related basic science research.  That danger on the one hand describes him with the euphemism “vaccine skeptic” and on the other quotes former NIH Director Harold Varmus as saying: ”enormous risks especially if [Trump] placed someone as unhinged as [Kennedy] into a position of responsibility.”  There is a lot of room between skeptic and unhinged.  Trying to present an even-handed description in this case is a clear error when responding to RFK’s rhetoric. It is not a stretch to say that his rhetoric may replace science as the guiding principle behind the NIH.  That is a problem regarding the role of science advising policy makers and a boundary problem on the part of rhetoricians.  Simply put – if you are an administrator with no science background and you are making science up – stay in your lane.

Another clear example of potential problems with a Republican Congress is still based on the COVID-19 pandemic and insistence that the bat coronavirus research was the source of the pandemic virus.  This has reached meme status in the MAGA community fueled by rhetoric from both Trump and members of Congress who have directly attacked NIH scientists.  In some cases those verbal attacks have resulted in threats of violence to those same scientists. All of that happening even though the origins of SARS-CoV-2 are not settled science - but most recent reports suggest origins in the wild like practically all pandemic viruses. Some politicians want to reform the NIH and that is typically a code word for changing an institution to something more like the one they want.  In the case of the Trump administration that can include banning fetal tissue research and I would expect other issues related to women’s reproductive health that the religious right objects to.

The final essay by Rachel Vogel (5) is focused primarily on the implications of Trump’s threat to leave the World Health Organization (WHO). The author reminds us that Trump started this process in July 2020 based on the false claim that “WHO had helped China cover up the spread of the virus in the early days of the pandemic.”  The Biden administration came in and stopped that process.  WHO member states are bracing for a second withdrawal or a reduction in funding to key programs that many think would be catastrophic.  Cuts could also be made to the US Agency for International Development (USAID) that administers many of these programs and other agencies funded to research and treat tuberculosis, malaria, and AIDS.  Political and religious ideology may also be a factor.  A program for AIDS relief started by George W. Bush is a possible target for indirect support of abortions and the use of language that right wing religious groups consider offensive including “transgender people” and “sex workers”.  It is likely that a “gag rule” on the dissemination of abortion information will be reinstated and the penalty will be withdrawal of funding.  Like aspects of the other essays, the author is hopeful that there will be ways to compensate for the Trump worst case scenario. Reform of the NIH has been talked about in the past.  Europe and other countries could compensate for the lack of US support.  Competitive funding sources like the BRICS group (Brazil, Russia, India, China, and South Africa) could also come to the forefront.  The amount of funding available from BRICS and what those countries would require in return is speculation at this point.    

The 5 essays highlight real problems and given Trump’s current nominations for the Director of HHS and NIH probably minimize them.  Suggested solutions to the problem seem to be the time-honored stay out of politics, present the data, and take the high road.  This is really an inadequate plan.  How do I know this?  The valuable lesson is that this is what psychiatry has done for decades.  Ever since Thomas Szasz began his repetitive rhetoric that there was no such thing as mental illness, or that psychiatric diagnoses were like drapetomania (later modified to drapetomania was somehow a psychiatric diagnosis) we have had to tolerate nonsensical criticism while major physician and psychiatric groups were silent.  The many leaders in the field who did respond and had excellent responses were eventually ignored as the neo-Szaszians continue to repeat this nonsense decades later.  An experiment by Rosenhan that was exposed as fraudulent continues to serve as an anchor point for antipsychiatrists – even though what happened clearly did not impact the field (deinstitutionalization had already started and the neo-Kraepelinians were already at work on reliable and valid diagnostic criteria).  The result of this rhetoric is significant hangover on the field. It is difficult to make a direct connection but common sense dictates that psychiatric resources probably takes a hit from all the repetitive negative rhetoric. That is the risk to all of medicine, public health, and scientific research with the current MAGA rhetoric.

Science typically considers itself above rhetoric and politics at least until the competition for grant funding heats up.  The editorials all fail to comment on this.  Instead, they suggest that leading by example, being available for consultation, and generally taking the higher ground will somehow correct corrosive politics.  That is both a naïve and losing strategy.  We currently have a party that has lied and misinformed the public repeatedly and at record levels.  It is supported by a large mainstream media organization with the same goals providing a constant diet of misinformation. It is funded by billionaires. The effects of all those dynamics are easily observed in attitudes toward real science and scientists.  Experts on autocracy and authoritarianism point out that the effect of constant lies on any group of citizens is that eventually they don’t believe anything – even if it happens to be the truth.  A standard authoritarian tactic is to attack expertise and pretend that it does not exist.   

At no recent point in history have legitimate scientists, physicians, and public health officials been threatened with violence by people who have no clear idea of what they do.  In many cases these professionals have been responsible for saving thousands of lives. That situation should be intolerable to any scientist or modern citizen who can evaluate the effects of science.  Furthermore, it should not be supported at any level by the government, but it currently is.  The same party that that supports lies also supports threats and violence at various levels up to an including an attempt to overthrow the US government. With the current election there is the expectation that attempt will be whitewashed as a protest further eroding the rule of law.

The curious aspect of this process is that it is right out there in the open. The repetitive lies are picked up by social media.  Proxies of that ideology begin to amplify them to the point that they become memes rapidly assimilated by true believers in the same ideology.  At that point they become part of that culture and resistant to change from rational arguments and additional information. There is no evidence that I am aware of that change is possible at that point and the most recent Presidential election is solid evidence.     

There is a semi rational basis to politics at best.  The current election illustrates this at many levels.  Major questions of character, intellect, and policy were ignored. The fact checking mode of the fourth estate was minimized.  Some media outlets were mere propaganda arms and provided no information for voters to make an informed decision. 

The only rational course is to continuously counter the repetitive propaganda being put out in social media.  There is no comprehensive strategy for doing this but it must be done.  It will take more than a few editors from Science journals.  A starting point may be a coalition of editors of science and medical journals with their own website dedicated to refuting misinformation and posting the real science. The time has come to stand up for what is science and what is not and protect people under attack for doing the right thing.

 

George Dawson, MD, DFAPA

 

References:

 

1:  Kaiser J. Trump won. Is NIH in for a major shake-up? Science. 2024 Nov 15;386(6723):713-714. doi: 10.1126/science.adu5821. Epub 2024 Nov 14. PMID: 39541475.

2:  Mervis J. Research advocates see 'no good news for science'. Science. 2024 Nov 15;386(6723):712-713. doi: 10.1126/science.adu5820. Epub 2024 Nov 14. PMID: 39541473.

3:  McNutt M. Science is neither red nor blue. Science. 2024 Nov 15;386(6723):707. doi: 10.1126/science.adu4907. Epub 2024 Nov 14. PMID: 39541446.

4:  Thorp HH. Time to take stock. Science. 2024 Nov 15;386(6723):709. doi: 10.1126/science.adu4331. Epub 2024 Nov 7. PMID: 39508752.

5:  Vogel G. 'America first' could affect health worldwide. Science. 2024 Nov 15;386(6723):715. doi: 10.1126/science.adu5822. Epub 2024 Nov 14. PMID: 39541476.

The Most Important Thing I Learned in the 8th grade….

 

I grew up in the northernmost regions of Wisconsin on the shore of Lake Superior. I also grew up a relatively long time ago. There were no wealthy people around – you were either a working-class family with a regular pay check or a working-class family with an irregular paycheck. It all depended on the work.  My father was a railroad fireman (he shoveled coal in steam engines) and later an engineer on diesel locomotives.  Even though he was in his forties work was very irregular due to the seniority system used by railroads.  The oldest people got their selection of jobs and there were more people than jobs. Many people at the top refused to retire creating a lot of anger and controversy by younger people wanting to work more hours.

The entire population of my home town was from European ancestry – everyone was white. Irish and Scandinavian derived families clustered on the west side of town and eastern European, German and Polish families on the east side of town.  We lived on the east side about 7 blocks from the lake.  

The town was located between two reservations inhabited by the Red Cliff and Bad River Tribes of the Lake Superior Chippewa. It was rare to encounter anyone of Native American ancestry unless you played sports and competed against some of those teams or until you were in middle school or high school. I used to fish on the Bad River Reservation with my grandfather and we got to known some of the men who ran a local boat landing.

Racism was overt and it was everywhere.  That may sound odd given my description of the place, but it would not take much to set people off.  An image on television like Muhammad Ali talking in his usual provocative manner or Willy Mays showboating in center field was all that it took. Racial epithets followed at a rate and intensity that was quite unbelievable.  There were a few cooler heads.  My grandmother was one.  All that she could do was to insist that people not talk like that in her presence.  As a boy – it was a mystery to me that the rest room facilities on trains were segregated – even though we were practically in Canada and there were no black people around.  I asked my father why the porter had to have a separate bathroom and he could not give me an answer.  At the time I had never seen a porter.    

The time frame of my youth coincided with the American Civil Rights Movement (1954-1968) but there was no discussion of it in schools, churches, or the public discourse.  The only place where it came up at all was in my 8^th grade biology course.   On a day back in 1965 – I learned the best lesson I ever learned in high school and possibly in my life.

I was a definite nerd back then and extremely interested in science – especially biology.  It was the only class that seemed to be interesting.  That was probably fueled by being a neurotic kid and always wondering if I had an undiagnosed disease or not.  My imagined symptoms at the time seemed limitless and I would find myself in the library researching rabies and various cancers primarily.  It seemed that cancer was always a dinner table topic for my parents.  A relative with exploratory surgery and the ultimate ending: “They just sewed him back up – there was nothing more they could do.”  There was not a lot available to an 8^th grader with those interests so I ended up picking up a lot of biology on the side. That could be useful or not depending on who the teacher was – so I kept most of it to myself.

I can still recall the excitement of learning that our biology course had been changed to Modern Biology and there was a new textbook (1). Our teacher told us the course would be more relevant and it could also form the basis for a college trajectory.  All I can remember about it today is frog dissections, the genetics of taste testing and tongue rolling, and the idea that race was a social construct that had nothing to do with biology.

That’s right – the social construct bomb was dropped in the middle of the Great White North in 1965 and it did not make a sound. There was no emphasis about it.  There were no lessons seeking to connect it to the culture at the time and the Civil Rights Movement.  There was no controversy at school board meetings. It was right there in the book.  A biological definition of races and a description that the isolated groups that were called races would probably intermix at some point and the artificial, color-based designations would just disappear.  We would all be one big happy Homo sapiens family. That information was as rational as it was profound when I read it the first time and witnessed how the idea was repeatedly violated over the next 50 years.  I had seen it violated so many times I went back and found the original biology text that I read in the 8^th grade.         

Some of the key quotes from that text are on the following graphic.  The basic idea is that the species originated and subpopulations migrated over thousands of years and were geographically isolated. During that isolation mutations occurred in those populations that led to some alterations in physical appearance but the genome wide similarities were still much greater than any between population differences. One standard species definition is the ability to interbreed between populations and that was sustained.  Even though populations were named by different physical characteristics they were biologically identical. In the modern era, the longstanding physical barriers to population mixing are no longer present and we should expect a more homogeneous population over time.

Flash forward to 2024.  I just read a paper (2) that should be read by everyone and combined with my personal experience is the impetus for this post. The additional impetus is the recent election in the US and a political cultural movements that are overtly racist, anti-racist, and anti-anti-racist. There are some common interests.  As a clear example, the overtly racist and anti-anti-racist movements coalesce around the central idea that the white race will be “replaced” by non-white races and this will result in significant loss of political advantage. That theory is called the Great Replacement Theory and it plays out at several levels not the least of which is the claim that one party seeks to use it to their advantage to get more voters and they will do this by illegal immigration. Never mind the fact that non-citizens cannot vote.  And never mind the fact that the current political landscape is a small blip in geological time. 

The paper is written by two evolutionary and theoretical biologists.  Expectedly it contains an abundance of modern theory about human genetics, evolution, and most importantly modes of transmission between individuals in populations. The most interesting focus for biologists and physicians is that there are ways to transmit behaviors between generations that are outside genetic transmission and that there are potential interactions between these modes and individual genetics.  The authors use an example of dairy farming and the persistence of lactase alleles.  Dairy farming can select for those alleles in the population but cultural adaption like the use of milk fermentation can also be successful in the absence of lactase persistence.  The main drivers of non-genetic inheritance are depicted in the graphic at the top of this post from the authors’ paper. 

In the body of the paper, they discuss cultural evolution (CE) and gene culture coevolution (GCC) models.  The lactase allele in the context of dairy farming is an example of GCC.  They discuss common errors made in suggesting that race is biologically based and introduce how cultural factors explain some of the differences attributed to genetics.  Intellectual differences are cited as one early example that was attributed to genetics.  Modern genetic studies combining cultural factors show that there are no clear genetic differences between comparison populations.  All of the differences in educational achievement can be attributed to cultural factors like cultural role models, parental expectations, resources, social roles, and environmental niche.  Negative factors like racial discrimination and adverse life experiences can also play a role.  This paper is a reminder to carefully look for other sources of variance in large in genome wide association studies (GWAS) and whether cultural factors were studied.  My speculation is that the commonest cultural factor in play these days is childhood trauma because the Adverse Childhood Experiences (ACE) checklist is available and considered a measure. This paper would suggest that is only part of the story.      

So here it is nearly 60 years after I read that race has no biological basis and that it is a social construct. Race is still being used to divide citizens, suppress the vote, ration resources, stereotype people, direct violence at people, and actively discriminate against them.  I don’t know if reading this paper will be helpful at all so I provided the slides comparing my 8^th grade biology text and a current state of the art paper in abbreviated form.

I did not touch on the rhetoric involved and that is long, detailed, and discussed in other places on this blog.  Very briefly – philosophers and other rhetoricians have taken an anti-science stand in the past because they believed that science was given too much power.  That came about as philosophical musings gave way to more predictable scientific explanations. The problem is that science is an evolving process rather than a book of clearcut answers with some areas less evolved than others.  Eugenics and even more recent claims that race and associated cultural characteristics and endpoints are genetically based could be considered part of that process.  But many of these arguments still persist and like other areas of science have been politicized.  The authors here present all the reasons those arguments about race as a biological property are wrong.      

It was known in 1963 and it’s even more well known today.

 

George Dawson, MD, DFAPA

Supplementary 1:  In terms of cultural factors and educational attainment I was reminded of one from my background - the Medical College Admissions Test (MCAT).  Back when I took it there was a general knowledge section that was supposed to show that the applicant had a knowledge base outside of science.  It was heavily weighted to the arts and humanities.   It was eventually eliminated because it was shown to favor students in large cities where there was access to art galleries and museums.  The closest museum to my home town was 200 miles away.  My family rarely left town.  When they did it was usually to pick up my father from a train station about 30 miles away.  

Supplementary 2:  It is interesting to consider the political rhetoric of the last election as it applies to the concept of race as a social construct.  It was common to see minority groups that in some cases were extremely small being scapegoated for political purposes.  Some of it had to do with long standing racism and some of it had to do with cultural factors.  The whole point of this blog post is how can any of that be acceptable if we are all members of the same race with trivial differences in genomes, appearance, and behavior?      

 

References:

1: Botticelli CB, Erk FC, Fishleder J, Peterson GE, Smith FW, Strawbridge DW, Van Norma RW, Welch CA (Biological Sciences Curriculum Study). Biological Science: Molecules to Man. Revised Edition. Boston: Houghton Mifflin Company, 1963: 671-674.

2: Lala KN, Feldman MW. Genes, culture, and scientific racism. Proc Natl Acad Sci U S A. 2024 Nov 26;121(48):e2322874121. doi: 10.1073/pnas.2322874121. Epub 2024 Nov 18. PMID: 39556747.        

3:  Creanza N, Kolodny O, Feldman MW. Cultural evolutionary theory: How culture evolves and why it matters. Proc Natl Acad Sci U S A. 2017 Jul 25;114(30):7782-7789. doi: 10.1073/pnas.1620732114. Epub 2017 Jul 24. PMID: 28739941; PMCID: PMC5544263.

 

Graphics Credit:

From reference 2 Copyright © 2024 the Author(s). Published by PNAS. This open access article is distributed under Creative Commons Attribution License 4.0 (CC BY).

 

The Wait In The Emergency Department….

 

I just got back from the hospital.  My wife was admitted with acute appendicitis and is scheduled for an appendectomy in the morning. That sounds like a routine occurrence.  There are after all about a quarter of a million appendectomies done in the US every year.  I had a complicated case myself at age 18 with a perforated appendix, sepsis, and a weeklong stay in the hospital with a drain in my side. It was one of the sickest episodes in my life – even after the appendix was removed, I could barely talk with my friends who came to visit due to the pain and intense malaise – but mostly the malaise - an intense feeling like you have the flu but many times worse.

The problem started at about 2PM today when she noticed some nausea and abdominal pain.  She thought it started after drinking some coffee at her health club along with a protein drink.  Over the next hour she became intensely nauseated and started to get increasing pain.  She asked me to examine her and she had tenderness with some slight rebound tenderness in the right lower quadrant but no abdominal wall rigidity.  I suggested we go to the emergency department to get assessed for appendicitis.  She declined because she knew the process would take hours.  She preferred Urgent Care – but I reminded her it was the place of no urgent lab results and over penetrated x-rays.  There was nothing urgent about any of the Urgent Cares we had been to in our health plan.  I finally convinced her that the ED was the only place where things get done and I was worried that she had an acute abdomen that would only get worse. 

That is exactly what happened over the next two hours – increasing pain and nausea.  She was eventually vomiting continuously and in severe pain.  So, we headed down to the ED and got there at about 7:10 PM.  The check-in was excruciating slow.  An RN asked her about 50 questions while she could barely sit in the chair.  She kept saying that she had to lay down.  The nurse finally said – “I wish we had a bed to offer you but we don’t.  You can lay down over there on the waiting room chairs.”  The chairs she referred to were in the triage area.  My wife laid across two normal sized chairs and covered herself with a blanket we brought from home.  We were interrupted by a nurse who took her down the hallway gave her medication for nausea (Zofran) and pain (hydromorphone).  She came back to those chairs but we were eventually asked to go to the general waiting area.  I took this picture of her laying across a larger bench style chair that was too short for her to lay flat.  The blanket is our own.

By 3 hours she was finally given a bed in the ED low acuity area and more Zofran and hydromorphone.  That stopped working a lot sooner.  She was sent for a CT scan of the abdomen at the 3 ½ hour mark.  That was preceded by a visit by an ED resident and later the attending physician. We got the final CT result about 1 ½ hours later when I went out to report she was continuing to get worse and the medications did not seem to be doing anything.  The Zofran was changed to Compazine and more hydromorphone was given.  Eventually a new ED physician came in and explained that surgeons had been called and that an appendectomy would probably be recommended.

At that point it was after midnight and I discussed me going home after I had said my piece with the surgeons.  I had two specific concerns about antibiotic coverage.  My wife was out of it by then but whispered: “Just behave yourself.”  When you have been married as long as we have - that snappy repartee develops.

On the long drive home, I had time to reflect on a number of things.  First, I was an intern at this hospital in 1982 and at that time we had a trauma wing and a non-acute wing.  Interns would rotate from one side to the other every other night.  The attendings on each side wanted to get people in and out as quickly as possible and they emphasized that point to us.  There were no bottlenecks and people were triaged based on acuity.  There was a sign there tonight saying that was still the rule.  Of the 30 or so people in the ED waiting room are, there was possibly 2 other people as ill as she was.  They were all laying on waiting room chairs.  Second, the pace was leisurely with a lot of down time. I still don’t understand why it takes 6 hours to get a diagnosis of acute appendicitis when I could do it as an intern in 15 or 20 minutes without a CT scan (we were told the CT scan results took 30 minutes to get back.)  Third, if EDs are that inefficient why not offload some of the front-end work to Urgent Cares.  That would entail making an Urgent Care urgent – a place where you can get a rapid assessment and the necessary tests and (hopefully) get directly admitted to a hospital and treated.  Fourth, the bottleneck suggests to me that beds are being rationed at some point.  We were in the second busiest ED in the Twin Cities. At some point – ED demand has been well defined and it should be accommodated.  Fifth, the place is run down. When I was there the argument could be made that it was worse, but this is a brand-new addition to the front of a brand-new addition to an old hospital.  It had the gestalt of a bus depot. People were milling about coughing and sneezing around the people laying on chairs waiting to get a bed.  Not a good look for either patient satisfaction or infection control.

All things considered it is an ongoing suboptimal experience. Nausea and pain were tolerated far too long with little follow up on the initial results.  It highlighted to me the need for an advocate when you go into a hospital these days – not just to prevent major problems but also to troubleshoot around routine decisions like: “Should I press this call light because not only does the medicine not seem to be working but I feel a lot worse.” Or “Maybe you should ask that doctor again if they have the CT results – it has been an hour.”   And of course, if you know additional history as an advocate that is valuable information.

Were there bright spots?  Both the ED and surgical residents had a great interpersonal style.  They gathered all the relevant information, were personable, and the surgery resident did a great job with the informed consent for the surgery. That’s about it.  It took 5 hours to get to the two physicians who could do something and then another hour to do it.  I told the surgeon I was in the same ED as an intern and then went into psychiatry.  She said that her experience on psychiatry was “heartbreaking” and she thanked me for my service.  Not the first time that has happened.

That is all I know at this point other than the fact that my heart rate was up the entire time I was part of this process – probably by 30 or 40 beats per minute.  I got home at about 1:45 AM and got about 4 hours of sleep.  A call to her nurse this morning for an update resulted in me finding out that she is still in the ED at 9 AM.  She is now getting IV fluids, antibiotics, anti-nausea medication, and pain medication. Her surgery is not scheduled until 3:45 PM today.  The nurse reassures me that she will be in a hospital bed after the surgery and may be able to go home the same day.

This is state of the art health care in the US.  After 40 years of micromanaged health care by managed care organizations we have a system that is less efficient and patient centered than the one I was trained in back in the 1980s. The only real innovation has been the use of CT scanning for the diagnosis and that was scientific innovation rather than business management.  Despite all the patient satisfaction surveys we have a system that no patient should be satisfied with.

 

George Dawson, MD, DFAPA 

Update 1:  My wife had surgery today approximately 23 hours after presenting to the emergency department with acute abdominal pain.  It occurred at about 6:15 PM.  I have highlighted what happened over the first 24 hours in the timeline below. I have not filled in the medications yet – but she was taking an anti-nausea medication (Zofran or compazine) and pain medication typically hydromorphone or oxycodone.  She was getting IV fluids at a rate of 50 ml/hour and at one point became hypotensive and the rate was increased. 

The surgeon discussed the results of the surgery with me. The appendix had perforated and as a result they had to clean the area to clear away that debris.  The procedure was maintained as a laparoscopic appendectomy despite the area of infection.  The surgeon quoted a 20% abscess formation rate with this complication.  We discussed the importance of the right antibiotic combination to prevent infection and secondary infection of a recent hip arthroplasty.  The surgeon emphasized that despite previous statement – my wife would not be going home because she continued to need IV antibiotics and oral antibiotics at the time of discharge.  When I left the hospital, my wife was alert and had some continued nausea and abdominal pain.  She was in good spirts and the nurses were discussing how she would start the night out with frequent monitoring and how that would taper off into the next day.

The issue of antibiotic coverage for a hip or knee arthroplasty is somewhat controversial in terms of antibiotic coverage. Most sources suggest a first- or second-generation cephalosporin and metronidazole.  I will put the medications on the timeline if I can convince the nurses to print out a copy of the MAR (Medication Administration Record). Hoping that discharge is imminent if there are no complications tonight.

 The antibiotic issue in appendicitis is also controversial.  There is a debate about just how good a purely medical/antibiotic approach to appendicitis is.  For example, there is a high recurrence rate of symptoms after treatment with just antibiotics.  There is some uncertainty about whether the risk for perforation is reduced and there is currently a protocol to study that problem.  It seems fairly straightforward if you consider that a partial mechanism is that the infection causes circulatory compromise and this leads to tissue damage including necrosis and leakage of the appendix contents.  The CT imaging may also be predictive.  The first surgery resident suggested that if a pattern of obstruction was visible there would more likely be perforation and disseminated infection.  My wife’s CT scan had that pattern and she did sustain a perforation.       

Update 2:  My wife was discharged today (11/15/2024).  Nobody explained the rationale – but I am speculating it was because her blood pressure stabilized (she was hypotensive), she did not have a fever, and her physicians thought the current level of pain and nausea that she has will resolve in the next week.  She was discharged with 4 doses of a cephalosporin and 4 doses of metronidazole after receiving an undetermined amount of antibiotic.  I say undetermined because she requested a printout of the medications administered (MAR) and were told they would not give it to us.  Instead, we should go down to medical records and sign a release to get this printout.  That made no sense to me but I have encountered this resistance at this hospital before that included having to pay for a third party to send me many irrelevant records from my own treatment.  I would think that the world’s most expensive electronic health record would have no difficulty with this task.  We were given an incomplete discharge instruction sheet instead that highlighted some of the problems with this EHR – not the least of which is reconciling the discharge medications.

We were told that follow up will be with my wife’s primary care physician.  No mention of the 20% chance of an intrabdominal abscess or what to do about that.  Just instructions on how to inspect and care for the laparoscopy incisions. My wife also has a 6-week-old arthroplasty of the right hip. I emphasized the need for antibiotic prophylaxis to prevent infection of that hip to the surgical team.  Her orthopedic surgeons advised her not to get any dental work done for 6 months (it is 80% healed at 3 months) and in terms of bacterial exposure a perforated appendix is probably as problematic as dental work.  I will need to confirm with orthopedics about whether a longer course of antibiotics is needed.

She is currently ambulatory, in good spirits, and has pain, and nausea.  No nausea medications were given on discharge. A limited amount of oxycodone was given for pain at half the dose she was taking in the hospital (10 mg). The bulk of the pain treatment was a combination of ibuprofen, acetaminophen, and methocarbamol.  This polypharmacy approach to postop pain seems common these days.  I will be assisting her with the medications and helping her monitor her condition.  I will also be researching the antibiotic issue and trying to get in touch with her orthopedics team.

Supplementary 3: I am adding this note on the third day after discharge (post-op day #5).  It appears that my wife has made significant progress today with a marked reduction in pain and improvement in other gastrointestinal symptoms.  She did have a temperature of 99.5 F last night but none today.  She continues to take several pain medications, a medication for muscle spasm, and a medication for gastroesophageal reflux.  I messaged her orthopedic surgeon about the antibiotic prophylaxis to ask if he thought it was adequate to prevent infection of the hip prosthesis and he did. She has a follow up with him next week but none with general surgery.  Her discharge paperwork clearly states: "We recommend that all non-essential contact with health care facilities be avoided."  Apparently that includes discharge follow up appointments.

Supplementary - more on malaise - I use the term frequently on this blog and often interchangeably with "flu-like illness".  It probably correlates with systemic inflammatory components released during infection like cytokines.  Watching my wife go through this course of appendicitis - I was reminded of what I went through 50 years ago.  At that time I became acutely ill in a period of hours, met my primary care physician in the ED, and he took my appendix out and placed a drain in my side in a period of 2 hours.  I was in the hospital for the next week.  I can recall an intense sick feeling that was not associated with pain or nausea.  It was so intense - it was the only time in my life that I did not care if I lived or died.  I just wanted it to stop.  Friends visited and I could barely talk with them.  This is my understanding of malaise at the severest level.