Risk Assessment

Great article

by Lavender - 2024-01-23 17:02:21

Very good read, thanks Beni🙌🏼

The last sentences finish it off nicely "So, just as we focus on the rewards of driving to work, we also need to focus on the rewards of various medical interventions, not only on their risks. In the proper light of considering both risks and rewards, we can then make decisions based on knowledge, not fear.​👍🏼

Lavender

by Beni - 2024-01-23 18:30:03

Thanks, Lavender.  

I enjoyed the read too Beni

by Gemita - 2024-01-23 20:10:22

Hello Beni, I hope you are doing okay.  Thank you for your post.  I will certainly have a look at Another Day in the Frontal Lobe and may order it from Amazon.  I certainly enjoyed reading the link you provided.

Sorry to be negative but I am not sure that I ever think about rewards as I go about my daily activities, although I am very much in touch with all the potential dangers around the home and while we are out.  Caring for someone who can get into trouble very quickly has made me especially aware of the dangers around us.

The problem with diseases like diabetes or high blood pressure is that they are usually silent conditions for many many years until we have a serious event requiring immediate lifelong medication or surgery. To then suddenly have to face taking a new medication for life (like a blood thinner or insulin) or having invasive surgery can cause such shock and anxiety.  At those times it is not always easy to think about the rewards of medical intervention when that intervention might prove so unpalatable.  I am afraid lots of meds and interventions fall into this category today.  

I am not sure that I agree with the statement in the link that there is no official risk document that accompanies a diagnosis or disease itself.  When my husband was infomed about his diabetes diagnosis he received plenty of information on the risks of having the disease, same with his heart, bowel, kidney, lung diseases.  In any event the risks of a disease are available widely on the internet which frequently alarm us.  My take home message from the Risk vs. Reward link would be "ensure that the chance of harm is less than the chance of benefit".

I am extremely happy with my pacemaker now and it has definitely given me a quality of life but my journey did not start well.  I had to face some really difficult decisions about how best to manage my condition.  I sat on the fence for far too long before coming to the only decision I could - to take lifelong anticoagulation and anti arrhythmic meds and to treat my tachycardia/bradycardia syndrome with a dual chamber pacemaker.

Relevant?

by Penguin - 2024-01-24 05:23:51

Is this opinion piece in the BMJ relevant? 

https://www.bmj.com/content/376/bmj.o702

Yes relevant

by Gemita - 2024-01-24 06:06:06

Yes it is relevant Penguin but I see that the authors of this Opinion article accepted by the British Medical Journal have both been remunerated by Los Angeles law firm, Baum, Hedlund, Aristei and Goldman for a fraction of the work they have done in analysing and critiquing GlaxoSmithKline's paroxetine Study 329 and Forest Laboratories citalopram Study CIT-MD-18, although they have no other competing interests to declare. 

Hopefully this will widen the discussion on "risk assessment" without hijacking Beni's original message, helping us all to better assess our risks when accepting treatments?  I attach a link too:

https://www.ncbi.nlm.nih.gov/books/NBK470182/#:~:text=Evidence%2Dbased%20medicine%20(EBM),medical%20decision%20for%20the%20patient.

Evidence-based medicine I see uses the scientific method to organize and apply current data to improve healthcare decisions, so the available science is combined with the healthcare professional's clinical experience and the patient's values to arrive at the best medical decision for the patient. 

Risk assessment

by piglet22 - 2024-01-24 06:34:21

In many activities, risk assessment is straightforward.

A large element is experience, but you can always get caught out.

I climb ladders quite often. Will it topple over? Is the angle correct? Have I got the right footware on? What might happen if I fall?

That's the easy bit. Did I check it for corrosion? Structural integrity? Probably not, so I introduce a significant risk, but it was OK last time,

There has been a spate of young driver deaths here. I doubt that much risk assessment went into those unfortunate accidents.

Medical risk is a different matter. We rely on professional advice and pharmaceutical PILs.

It's a more one sided business, more trust than assessment for the patient.

How many of us really really read the consent form in pre-op situations? Or the tightly folded PIL?

But did anyone explain the risks of pacemaker implantation in 2005? No, but they didn't need to because I knew life couldn't go on as it was, so wheel me in.

Piglet

by Beni - 2024-01-24 07:10:41

Very well put, Piglet.  Thank you for your insight.

Very interesting short read

by Good Dog - 2024-01-24 08:15:16

As the author stated and Lavender emphasized; it is so essential that we make our medical decisions based in knowledge, not fear. I found that to be easier said than done. On the other hand, I do wonder how some folks can base their medical decisions entirely on one doctor’s recommendation. I know that it happens. I have a family member for whom the outcome of a medical decision would have been disastrous had it been based only on his doctor’s recommendation.

This was an excellent read. I thought that it made such good sense, but I also thought that there is more to the story! I say that only, because I was recently facing a medical decision that I agonized over. I believed that I had options, but not all the doctors that I saw believed that. Educating myself was critically important in an effort to understand both the risks and the rewards. However, understanding those did not eliminate or even minimize the fear. I think that the reason, at least in my case, was more about risk tolerance than anything else. Obviously, risk tolerance is subjective. Some folks might think that a 2% to 4% complication rate is acceptable for them, but I believe it to be a greater risk than I am willing to accept at this point in my life. I think that educating oneself often requires being very resourceful. I don’t think that is always second nature for everyone. I searched for and found the right doctor. I attribute much of that simply; to dumb luck, but it still required a lot of heartache and effort. Ultimately, I now have a doctor that I believe is the best, but more importantly, a doctor that would provide me with the treatment options that offered a solution consistent with my risk tolerance. So when it comes to risk assessment; that is my story. It may not be the whole story, because I have not yet had the procedure. That is coming next month. So we’ll see!

GEMITA's quote

by docklock - 2024-01-24 10:52:11

"Sorry to be negative but I am not sure that I ever think about rewards as I go about my daily activities, although I am very much in touch with all the potential dangers around the home and while we are out."

The above is from Gemita and I am in agreement with her thought.

If I sat on the edge of my bed every morning and debated whether getting out of bed is a risk for the day -- I would be incapacitated. If I analyzed every movement I took as a 'risk/failure/reward' I would not function.

Do I assess 'risk vs. reward' -- of course.  Having extremely poor balance, I use a'walking stick'  for balance -- even around the house.  My Boxer, Bo, is fairly excitable and I always look where he is before moving about.  During the winter/snow months we have, I don't think about going out for 'fear' of falling.  Breaking a hip at my age would virtually end my lifestyle -- so I'm careful.

But being careful isn't the end of the game.  I just think before I act.  It's just gotten to be a habit for me and I don't think much about it.

I live alone and have for the last 20 years.  My son lives in the same city so I can count on him for things I can no long do. Yeah, living alone has made me more independent, but also more careful.  I have good neighbors and my phone is with me (most of the time). 

While that article in question was written in 2013, a lot has changed.  I really don't put a lot of faith/trust in 'medical articles' as they often are subsidized by Big Pharma and have an ulterior motive.  I also don't put much faith/trust in consulting "Dr. Google" as anyone can chime in with their opinion. 

As our President, Ronald Reagan once said: "Trust, but verify".  Important then, even more so today with all the garbage floating around.

Just my opinion.     

Gemita

by Penguin - 2024-01-24 11:55:56

Gemita, 

Apologies if you felt that this was an attempt to hijack the thread.  It wasn’t, but it serves as a reminder to read the small print and to consider who authored the article. I didn’t do this! 

I should probably have suggested this originally, but could I suggest that you view the Rapid Responses to the article I posted? They come from various medical professionals and the general public and therefore the opinions widen out and include views from different fields of medicine and the general public. Some challenge the opinions in the article and two cardiologists have commented.  

I suspect that many people are grateful for drugs and devices which save their lives, but  as Good Dog and Piglet suggest, those same people may look into opinions more deeply when treatment becomes more complex; when there are longer term effects from the treatments they originally received or when they face a decision which seems perilous because there is little evidence or guarantee of success.   In those situations, should we just trust or is the onus on us to make our decision as secure as possible. In doing so whose evidence can we rely on? 

Fascinating thread

by IAN MC - 2024-01-24 12:22:03

It seems to me that medicine is all about minimising risk and we, the patients, must do as much as possible to help the process. Most of us have already had pacemakers installed which successfully remove most of the risks associated with bradycardia.

I have recently been involved in a risk--minimisation exercise. It all started when I read that one third of people over 65 and one half of people over 80 fall at least once a year. If you happen to be on blood-thinners , which I am, then the risk of a fall-induced brain bleed is significant

I am in the UK and the response of our NHS to my queries and E-mails asking about my personal fall risk has been FANTASTIC although I have never fallen down { except for one faint 13 yrs ago  , just before I had my first pacemaker fitted ! ]  This is what I have achieved so far :-

- I was invited to attend a falls risk -assessment clinic

- I had a home-visit from an occcupational therapist who assessed my home for adequate stair-rails, grab handles in my bathroom etc

- I have got a physiotherapy appt on  Friday when balance-improvement exercises will be discussed

All of these happened because of my query re the minimisation of risk associated with falls.

Ian

Penguin

by Gemita - 2024-01-24 14:33:49

You raise some important points.  The decision to go ahead with an elected procedure ultimately rests with the patient.  An emergency procedure is often out of our control.  For an elected procedure, we are given the information by our doctors, or should be.  At least I was. 

It was set out in writing exactly what my risks were with each particular procedure (the percentage risk figure was actually quoted) with all the possible difficulties I could encounter and of course the expected rewards that could be expected from either a pulmonary vein isolation ablation, AV Node ablation and/or a dual chamber pacemaker.  Whatever I chose, I would still have to go on anticoagulation and anti arrhythmic and/or a rate control medication for life.  It was all a bit daunting and I had to choose, but I had all the facts to work with.

In the event that we are not satisfied with the information that we receive from our doctor, then it is for us to continue to search for more answers or to seek a second or even a third opinion.  I read research papers all the time, several of them on the same subject to try to get a balanced view (and to try to understand a difficult technical subject).  So no, I don’t just leave it to the doctor caring for me, I like to do my own research and then to ask further questions.  But there comes a time Penguin when perhaps we need to stop searching and to make a decision based on our best evidence at the time and then never to look back.

Research sites I have found helpful:-

The BMJ site is excellent. I usually type in BMJ followed by the topic I want to read.

Google Scholar

PubMedCentral

BioMedCentral

ResearchGate 

Science Direct

I have quickly gone through the responses to the Evidence Based Medicine Opinion link you kindly provided.  They were extremely varied views. The BMJ journal is a well respected journal. I know from experience with our Pain Survey that it is very difficult to get an article accepted for publication so I am confident that the Opinion article you posted can be respected/trusted and deserves to be published in the BMJ. 

I would like to believe that good doctors everywhere will always search for the truth and will want to bring their patients maximum benefit, with the lowest risk and cost.  

Docklock

by Beni - 2024-01-24 15:01:22

Dear Docklock

You might be surprised to know that our nervous system is constantly evaluating risks in the environment and adjusting our physiological response to deal with potential risks subconsciously.  It is called neuroception and it is an automatic neural process.  This mechanism scans the environment for safety and danger continuously without us noticing.

Essentially, neuroception is the process by which neural circuits determine whether a situation or person is safe, dangerous or even, life threatening.

As opposed to perception, which is a cognitive thought, neuroception involves brain processes that work outside of our conscious awareness.  These evaluations can occur extremely quickly and without our knowledge.

So, while we think we are not constantly aware of our surroundings, it would appear that we are.

(However, having said all of this, my neuroception seems to be a little faulty.  It failed to notify me of the ice in my driveway which resulted in my taking a little tumble on my well upholstered derrière yesterday.   Thank goodness for upholstery!)

Kindest regards,

Beni

Ronald Reagan

by piglet22 - 2024-01-25 09:48:32

When you have the nuclear button you really do have to risk assess, Trust the information given by the analyists, verify the enemy and their intentions.

With the world standing at 90 seconds to midnight on the Doomsday Clock, it's even more important.

Neuroception

by Lavender - 2024-01-25 21:33:20

Neuroception can be faulty. It can make us think there's a risk when there isn't. It can make us think people are untrustworthy and thus work against our ability to take medical advice. 
That can certainly hinder our ability to take risks or try new meds. See this article:

https://chhs.fresnostate.edu/ccci/documents/07.15.16%20Neuroception%20Porges%202004.pdf

I too think of our need to get more information to make decisions so we can assess risk vs benefit. We may not have a medical background so we are dependent on advice from professionals. My parent's' generation blindly trusted whatever the doctor told them. My generation does more research before making decisions. For example:

My ex husband was diagnosed with stage four colon cancer. He was told he had to have an immediate removal of most of his colon and have a permanent colostomy bag. He refused treatment and said he would rather die. This doctor said it was do this or die. 
 

I learned of a new gastrointestinal surgeon in the area who was doing a different approach whereby he used chemo and radiation, did a partial removal of the infected colon, a temporary colostomy bag and then more chemotherapy. It followed by a reversal of the bag in time with a reconstruction of the colon into a J Pouch. 
 

My ex husband refused treatment but eventually I got him to agree to it. It took nine months start to finish and he was and still is cancer free-over 20 years later. 
 

Had we listened to dr number one-his life would be different. Research led me to doctor number two and his approach to the cancer. 
 

It is a must to do informed research in order to assess risk vs benefit. With faulty neroception, you might have anxiety and mistakenly never trust any medical professional or fail to believe anyone. 🤪

Thanks Lavender; you made some excellent points and great info

by Good Dog - 2024-01-26 13:06:41

My dad had a very similar experience to your ex-husband's. He was diagnosed with bladder cancer in the mid 1980's. The Doc had him scheduled for surgery to remove his bladder 3 days later. My sister was working in the medical field at the time and she said "whoa"; you need a second opinion. She sent him to an Onocoligist that had a relatively new procedure back then to remove tumors with a catheter (minimally invasive). He went on to live a normal life for another 30 years with his bladder in-tact. Although, his brother had the same cancer 20 years after my Dad. The Doc performed the exact same procedure, but accidently punctured his bladder. He died the next day. I have seen too many incidents like that which is why I don't think there is any so-called routine surgeries. Frankly, it is also why I have a lower risk tolerence than many other folks.

I think one of the biggest differences that separate us from our parents is the internet. We have so much more info at our fingertips today! 

Thanks!

Dave

Lavender

by Beni - 2024-01-26 15:59:36

Dear Lavender

There is a lot to unpack in your post.  But that is a very good article.  I always like food for thought.

You are absolutely right.  Neuroception can be faulty.  (I am living proof.)  There are so many variables which affect how we process information.   It is often manifested as skepticism, which when applied to medical issues is defined as doubts about the ability of conventional medical care to appreciably alter one's health status.

There are so many factors that drive people to make the decisions they do.  Some can be attributed to imagined dangers.  Others are derived from personal experiences or the experiences of others.  But, also,  we live in a time of scientific (and one could, I think,  extend that to medical) skepticism.  And without delving too much into this since it is such a “hot button” topic, one could reasonably extrapolate this skepticism, this wide spread doubt, to the malfunctioning of the neuroception neurons.  The Polyvagal Theory is one of the newer thoughts about this topic of neuroception.  But it may not be the whole answer.  The human mind is incredibly complicated and science is gaining new insights, ones that often contradict previous beliefs, all the time.

It would appear your ex-husband was in the “frozen” mode of the “flight, fight or frozen” survival response that is connected to neuroception.  Sometimes, even the best of us are simply overwhelmed with decisions we have to make.  Sorting through options, listening to opinions, gathering information from reliable and not-so-reliable sources, etc.  is exhausting.   All of this, frequently, being done under incredible pressure and duress, including timelines.  What to do?  Who to trust?  Who is right?  What if I make the wrong choice?  What then?  Under such stressful conditions, it is not uncommon for people to simply “freeze up”.   We have all seen it happen.  Some of us, including me, have experienced it ourselves.  To simply stop and say “no” to everything.  Not always the logical answer but, hey, human beings are specialists in being (frequently) illogical.  Most of us, when we see a car round a corner and drive towards us at a high speed while we are crossing, make the decision to move across the road a little faster.   But, sometimes, people freeze.  It happens.

In the case of your ex-husband, he had you.  YOU made all the difference; you were his life saver.  He was one lucky person to have you and your persistence to hunt for options and answers.  Your dedication to take the time and make the effort to persuade him to choose this other path.  The one you found for him.  What a gift you gave him! 

The hunt for options brings me to the topic of second opinions and individual doctors’ skill sets. 

Medicine is so incredibly complicated and is moving at such a phenomenal speed that I wonder how any individual doctor can keep up with all those moving parts.  Not every doctor is going to, or will want to, or even be able to, keep up with each and every innovation in his (or her) field of expertise.  Sure, AI and computers in general help, but there will be a point in every professional’s life where they draw the line. (Kind of like our car mechanic.  He drew the line at taking course(s) to be certified in servicing electric/hybrid cars.  He figures he will have enough work servicing IC engines to last him the rest of his life.  He is 31 years old, BTW.  Not that I am comparing car mechanics to physicians.  I am hoping you get my drift, though.  As individuals, we all have limits.)

Something that might help is a central data base where we could enter the proposed treatment for a certain diagnosis and be able to explore treatment options there.  Ideally, there would then be a link available to the medical professional who offers that treatment.

(I don’t know if that is feasible or not.  But in Ontario, where I live, a doctor has proposed something very much like that as a tool to speed up treatments and referrals.  It is just a proposal right now but it will be interesting to see if it goes anywhere.)

But back to neuroception.  When you think back to our ancient ancestors, back when we were just as much the huntee as we were the hunter, paying attention to messages of fight or flight (or freeze) from their brain probably saved many an ancient relative of mine from ending up as being the main entrée on the saber-toothed tiger’s luncheon menu.   I would think hearing a twig snap in the area behind you required one to err on the side of caution and get out of harm’s way as best (and fast) as one could.

After all, as my old Scottish grandmother used to say “It’s the second mouse, dearie, that gets the cheese.”  Exercising caution was her personal motto.

Best Wishes

Beni

GREAT CONVERSATIONS

by docklock - 2024-01-27 13:54:30

This has been one of the longest/largest 'conversation' that I've witnessed in my short time on this forum.  I have learned much and enjoyed the conversation.

Beni

by Lavender - 2024-01-27 20:01:57

Dave, what a story!  But we do what we have to do and move forward with the best intentions. What a shame the bladder was punctured!

Beni, I love the mind stretching in this thread! 

So from the article I fore mentioned, we can see that assessing risk vs benefits can be impaired in those with mental illness. Flight, fight or freeze can be impaired.

What happens when neuroception itself is impaired? From a theoretical perspective, faulty neuroception—that is, an inability to detect accurately whether the environment is safe or another person is trustworthy—might lie at the root of several psychiatric disorders:

Areas in the temporal cortex that are assumed to inhibit fight, flight, or freeze reactions are not activated in people with autism or schizophrenia, who have difficulty with social engagement.

Individuals with anxiety disorders and depression have compromised social behavior; difficulties in regulating the heart rate, as reflected in measures of vagal control of the heart; and reduced facial expressiveness.

Lavender

by Good Dog - 2024-01-28 07:41:30

After reading your latest post, all I can say is OMG. I think it goes without saying that it is very close to impossible to help someone that does not want to be helped. I cannot even begin to imagine the challenges that you faced over such a very long period of time. All I can say to that is; I think you are a saint!

God bless you!

Sincerely,

Dave

Lavender, again

by Beni - 2024-01-28 12:31:17

Oh, Lavender, I am so sorry you had this experience.  To want to help someone, someone you care about, who does not want or is unable to help himself is a nightmare.    I can only imagine how isolating and frustrating this journey was for you.

When I read your initial post about your ex-husband, I did not know he had been diagnosed with a psychiatric disorder.  Of course, that changes everything.

Faulty neuroception may indeed lie at the root of psychiatric disorders such as autism and schizophrenia. 

But other recent studies have shown that there maybe a genetic component to these mental health conditions.  One study noted that a deletion in chromosome 22 may lead to the developing of certain disorders.  Genetic factors are thought to make substantial contributions - as much as 80% - to the etiology of autism, schizophrenia and bi polar disorder.

When it comes to clinical depression, then a whole host of possible causes may play a role in the development of this condition.  Genetics, abuse, age, some medications, conflict, death or loss, gender, serious illness, substance abuse, etc. can all be contributing factors.

It has also been found that some people with clinical depression (which is described as a constant sense of hopelessness and despair that can last for many days, weeks or even longer) have a smaller hippocampus – the region of the brain that is integral to the storing of memories.  A smaller hippocampus results in fewer serotonin receptors which then results in less of the chemical being available to the brain, resulting in a chemical imbalance.  Serotonin is associated with happiness, focus and calmness. 

(This is where prescribed medications come into play.  Selective serotonin reuptake inhibitors (SSRIs) are the most commonly prescribed antidepressants. They can ease symptoms of moderate to severe depression, are relatively safe and typically cause fewer side effects than other types of antidepressants do.  SSRIs treat depression by increasing levels of serotonin in the brain. Serotonin is one of the chemical messengers (neurotransmitters) that carry signals between brain nerve cells (neurons).

SSRIs block the reabsorption (reuptake) of serotonin into neurons. This makes more serotonin available to improve transmission of messages between neurons. SSRIs are called selective because they mainly affect serotonin, not other neurotransmitters.)

But, and there is always a ”but”, this difference in the size of the hippocampus is not present in all individuals who have been diagnosed with depression.  So, where does that leave that study?  What does that mean? I don’t know.

Which leads me to another thought that has probably occurred to you as well.  Dr. Porges Polyvagal Theory is just that - a theory.  That doesn’t mean it isn’t valuable science and theory is, indeed, an important part of science but nothing has been proven.   (I have included a link to an article whose author disputes much of Dr. Porges theory.)  There is, almost always, an opposing view on just about everything.  Opposition, I think, improves the science.

https://www.psychologytoday.com/ca/blog/women-who-stray/202209/polyvagal-theory-useful-narrative-still-just-theory

By the same token, the discovery of a missing component on chromosome 22 is real but what does it mean?  The article I read did not say the missing bit absolutely lies at the root of the development of ASD or schizophrenia. It just said it “may”.  Nothing definitive there.

This field of study, like almost everything else in the world these days, is always in a state of flux.  Theories come and go.  Findings lead researchers down one rabbit hole only to find that it is a dead end or there is a branch leading off in another direction.  Sometimes you feel like you are Don Quixote, tilting at windmills.

Other times, there is a real eureka! moment and some pieces actually fall into place. 

I can tell, from your posts, that your sometimes sad life experiences have helped create in you a strong sense of purpose and compassion.  This part of your personality comes shining through in each and every message you post.  (I think I have mentioned this to you before.)  And I know your strong faith provides you each and every day with fresh commitment and direction as well as personal strength.

It is a joy to correspond with you.  Happy Sunday.