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Specific People

It will surprise some of my readers and none of my friends when I say that I don’t like people very much.  Specific people I like a lot but as for your average generic human…not so much.  People are messy.  They throw off your schedule.  They’re unpredictable.  They expect reciprocal playdates.  Two events yesterday reminded me the power of the point at which average and generic become specific.

The first of these involved my work with elders.  My companion for the morning was a woman I had not met before.  This woman had juvenile diabetes and kidney disease. Her life revolved around dialysis.  She had seven siblings all of whom had died of similar maladies, the most recent merely 3 weeks before I met her.  One of her toes had been recently amputated.  She also had beautiful skin, smelled wonderful, and was carefully and stylishly dressed in a jean jacket and the most outrageous black wig I have ever seen.  You know what this wonderful lady was worried about?  The ten bucks of my own money I had spent on valet parking.  She was concerned about me.  That puts life in perspective, no?  She’s certainly not average or generic anymore.  She’s a specific person that I like a ton.

Later that day I went to the gym.   I did a group class I had done before, Tabata, in which you do impossible things for 20 seconds and rest for 10, over and over for 45 minutes.  It’s lovely, and I highly recommend it for people who love torture.  So anyway, I’m panting my way through the final 10 minutes when the instructor says that the last group of exercises will be tandem, that is, with a partner.  Now I’m the kind of gym-goer who hates, hates! interacting with others while exercising.  I will exercise next to other people, but god help me if I should have look at them or make conversation.  Remember I don’t like people much.  The instructor paired me up with a woman who, I had noticed out of the corner of my eye, was in sick shape and was absolutely killing this class.  The girl could out-burpee me six ways to Sunday.  I had never met her, but now we were going to share our sweaty pain.

Reader, this generic, average person instantly became specific.  She encouraged me when I didn’t want to do one single more squat jump.  She put her hand on my shoulder and I put mine on hers while we trembled through plank position, all the while talking about how many kids we had and how we both had to go take care of them after class.  We touched each other’s sweat and high-fived at the end.  I like her a ton.

Our current world would be transformed if we could make a few more generic humans into specific ones.

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R.E.S.P.E.C.T

I have recently started to volunteer for an organization called Friendshipworks, a wonderful group of people whose goal is to alleviate the pervasive problem of elder isolation.  Once a week or so I escort an elderly client to a doctor’s appointment, to help them get where they need to go but also to hang out and talk with them.  I started doing this as a way to give back, but volunteering in this way has had the unexpected side effect of giving me a patients-eye view of outpatient medicine.  I have had my own doctor’s appointments, of course, but my pediatrician, OB, and primary doctor all know I’m a physician and so I have long suspected that my interactions with them are somewhat different than what the general public would experience.  I didn’t realize how different.

You see, as an escort I’m anonymous.  Assumptions are made.  I’m just some middle-aged woman who clearly doesn’t have anything better to do than sit in waiting rooms with old people.  I push wheelchairs.  I walk very slowly with my elder.  I sit quietly during appointments.  I’m a nice person but maybe not very bright.  I clearly don’t have a job, or at least not a full-time one.  Perhaps I’m a nurse’s aide, or a distant relative.  I’m greeted politely or ignored completely.  People assume I will keep track of my elder’s stuff: walker, bag, shoes, which of course I do, and gladly.  I’m talked down to, as is my elder.  I’m greeted with exaggerated patience by the secretaries, as is my elder.  I’m sharply corrected for moving a chair in the waiting room to the wrong place.  My time is of no value – I can be told to wait, then see a tech, then wait some more, then be sent to get an imaging study that should have been scheduled ahead of time, then wait.  It is assumed I, and my elder, have no place to be.  We are told to come back in three months after nothing is accomplished except a medication change that could have been done over the phone.  People seem genuinely surprised when I do speak up, talking as I do in complete sentences.  The doctor is non-plussed when I suggest that that imaging test could be scheduled ahead of time next time, as though she never thought of that.  If I use long words they look at me like I have three heads.

We, my elder and I, are nobodies.

No patient, or escort, or family member, should ever be assumed to be nobody.  Every person should be approached with respect.  Period.

The book part II

He’s the website:

https://smile.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=Leng%2C+Shirie

The Book

Hello, readers!  I haven’t been here for a while but that’s because I’ve been working on the long-promised book about medicine and nursing.  I’m pleased to announce that it is out!  “The Choice: medicine vs nursing, which field is right for you?” is now out on Amazon.  Six bucks, 64 pages, check it out!

The End of Empathy

New word of the day: Tele-empathy.

Tele-empathy is not being empathetic over the phone.  It is not crying in the sad parts of your favorite TV show. It is not beaming empathetic thoughts magically across time and space.  No, tele-empathy is a technology.  I should rather say, a group of technologies recently being created to increase the empathy of health care providers.  This is rich, you might say, coming from an industry that brought us electronic medical records, automated “help desks”, and robocallers.  Sandeep Juhar, a writer for the New York Times, tried out one of these devices, one that simulates the uncontrollable shaking suffered by Parkinson’s patients, and describes tele-empathy as follows: (www.nytimes.com/2017/07/29/opinion/sunday/empathy-gadgets.html)

…“tele-empathy”: using technology to improve insight into the patient experience.  Movement disorders like Parkinson’s are one aspect of this work, but there are others. Engineers are studying the airflow patterns of patients with emphysema to replicate their shortness of breath in others. A virtual-reality program is being developed to misalign sound from video, a technique called dephasing, in ways that mimic the experience of disordered thinking in psychiatric illness. Gadgets are being made to numb the feet to reproduce the symptoms of diabetic nerve disease.

Makers of medical devices are usually not motivated by empathy themselves, so they must think there’s a market for this sort of thing.  Why?  Because empathy is in short supply virtually everywhere you look.  The GOP healthcare bill showed a remarkable inability to walk in the shoes of the less fortunate.  The Charlie Gard tragedy demonstrated how little we understand the emotional consequences of our actions on those who actually have to care for terminally ill patients and on the patients themselves. The entire Middle East is a black hole into which sympathy, empathy, and compassion have vanished without a trace.  Juhar asserts that “Lack of empathy in caregivers — doctors, nurses, even loved ones — is one of the most widely voiced complaints in the health care field.”  If true, (Juhar gives no references to back up this statement), then why?

Empathy has been studied fairly extensively.  Some of the things we know are fairly obvious.  For example, empathy has been shown to be lower in people in positions of power and in personality disorders like psychopathy and narcissism, findings that will spectacularly fail to surprise the likes of Sean Spicer and Reince Priebus.  It is also true that our own emotional state can distort our understanding of other peoples feelings, as Tania Singer and her colleagues found in their work with an area of the brain called the right supermarginal gyrus (https://www.psychologytoday.com/blog/the-athletes-way/201310/the-neuroscience-empathy).  Empathy seems to suffer when we have to make very quick decisions.  It is harder for us to empathize with people who are very different from ourselves.  Empathy decreases in people who are in pain or otherwise stressed.

 98% of us (excluding psychopaths and narcissists) have the built-in ability to empathize, and this skill can be enhanced by specific training.  You can show emotionally charged videos to people, teach them about visual cues and body language, raise emotional awareness, and yes, simulate Parkinson’s.  But what it really takes to be empathetic is the ability, and willingness to, engage with people.  Some researchers believe that empathy is actually a choice that we make. https://www.nytimes.com/2015/07/12/opinion/sunday/empathy-is-actually-a-choice.html.  They contend that we choose to feel more empathetic when the object of empathy does not require sacrifice on our part, and that we may choose not to interact with certain groups because we do not want to feel empathy towards them.  It is pretty well known now that empathy decreases in medical school, particularly in the clinical years. This is because being empathetic is hard emotional work, and requires the sacrifice of our own comfort and well-being.  It requires that we slow down, understand our own feelings, ignore our own pain and stress, and confront our differences.

Empathy is the work of a life-time.

 

Right To Try

I haven’t posted on this blog for quite some time, having gotten distracted by the tempting and ultimately false hope of a do-over.  Despite my best efforts over the last few months two things have become clear.  One, I’m probably never going to play for the New York Philharmonic.  Two, last November isn’t coming back with a different result.  In my fog of violinistic pipe dreams and pink fluffy visions of impeachment I have held on to the belief that I have a Right To Try.

Imagine my amazement when I read that my Right to Try is now enshrined in rule of law in most states.  Not the Right to Try to have a music career.  Any delusional individual has that right.  No, I’m informed that I have the Right to Try…not to die!  Well, thanks, but if you think this means I’m going to renew that gym membership I’ve got a potential music career to sell you.

Actually, many states have passed Right to Try laws that concern end-of-life treatment options.  These laws are meant make it possible for terminally ill patients to get access to experimental or unconventional treatments that are not yet generally available, ie., that haven’t been approved by the FDA.  There’s even a website, righttotry.org, created by the Goldwater Institute, a conservative think tank.  Here’s what these folks say about the Right to Try concept:

Under Right To Try, a terminal patient would be able to access an investigational medicine if:

  1. The patient has a terminal disease and has exhausted all conventional treatment options
  2.  The medication has successfully completed basic safety testing and is part of the FDA’s on-going approval process
  3.  The patient has provided “informed consent” acknowledging the potential risk of the drug
  4.  The company developing the medication is willing to make it available to the patient

I am not opposed to people getting access to potentially helpful treatments.  I’m all for it.  There is some room for caution, however, when I consider a few facts about science, the FDA, and human nature.

First, science.  It is no secret that science has a mixed track record when it comes to medicine.  Science is the reason people don’t die of smallpox anymore, and the reason the maternal death rate is so low, and the reason we sterilize surgical instruments.  But there have been some spectacular fails as well.  Consider the anti-nausea medication Thalidomide.  The recent discovery that many of the stock breast cancer cells used for breast cancer research are not, in fact, breast cancer cells (read Rigor Mortis: How Sloppy Science Creates Worthless Cures, Crushes Hope, and Wastes Billions, by Richard Harris).  Or the striking discovery that real arthroscopic knee surgery is not any more useful than fake arthroscopic knee surgery (N Engl J Med 2013; 369:2515-2524December 26, 2013).

Second, the FDA.  Basic safety measurements are small pre-clinical trials done in the lab and on laboratory animals, not people.  Furthermore, some sources suggest that 90% of experimental medicines and treatments fail to pass FDA approval because they ultimately don’t work.

The irony here, of course, being that while no one believes in science any more, everyone still believes in science.  For now we come to the human nature factor.  A meta-analysis of studies of patient expectations, done by Tammy Hoffman and her team and published in the Journal of the American Medical Association Internal Medicine, showed that “…the majority of participants overestimated intervention benefit and underestimated harm.” (JAMA Intern Med. 2015;175(2):274-286.)  This despite the fact that nothing can be done for or to a patient without informed consent, and we can talk another time about how useful informed consent is, both informationally and legally.  Here’s what Daniel Engber of Slate magazine, who reports on this sort of thing, says about this:

Patients seem to overvalue innovation, as a rule, and assume that newer drugs have a better chance of working than any other treatment, just because they’re new. Not only does this sanguine view of scientific progress fail to fit the facts; it also leads patients to the converse, false impression that “nonconventional” treatments aren’t likely to be harmful in themselves. A more sober view suggests that the hope that often moves people to seek out these types of treatments—and the ever-present pressure to fight until the end—is not as useful as we think.

Despite all of the above, people have a seemingly endless capacity for hope.  It is part of what makes us human and allows us to get up every morning, practice, write, raise our children, develop new drugs, and vote.  We all have the Right to Try.

Is Your Hospital Anti-Baby?

Pregnant women – a public service announcement: the facility of choice for your birth experience might be Baby-Hostile.  You should probably check.

The World Health Organization (WHO) and the United Nations Children’s Fund (UNICEF) has created a “global initiative” entitled The Baby-Friendly Hospital Initiative (BFHI).  And thank goodness.  What new mother would want to be around people who hate babies?  I’m sure they’re promoting things like baby blankets, diapers, stuffed toys.  Maybe they have elderly people volunteering to be temporary grandparents.  They probably have Twinkle Twinkle Little Star on heavy rotation in the nurseries, which of course are outfitted in top-to-bottom Pottery Barn Kids.

Here’s what the BFHI website says the organizations mission is: (https://www.babyfriendlyusa.org/about-us/baby-friendly-hospital-initiative)

The Baby-Friendly Hospital Initiative (BFHI) is a global program that was launched by the World Health Organization (WHO) and the United Nations Children’s Fund (UNICEF) in 1991 to encourage and recognize hospitals and birthing centers that offer an optimal level of care for infant feeding and mother/baby bonding. It recognizes and awards birthing facilities who successfully implement the Ten Steps to Successful Breastfeeding.

Oh.  It’s a breastfeeding initiative.  I see.  Now, full disclosure – I did not breastfeed my kids.  I tried it with the first one. For a week.  It hurt.  I dreaded feedings.  The baby didn’t like it.  She cried.  I cried.  We stopped trying.  Our relationship got much better.  So far, my kids are healthy, happy, normally-weighted, and intelligent.

So breastfeeding is Baby-Friendly.  Which implies that if you are not breastfeeding, or promoting breastfeeding, you are, what, Baby-Unfriendly?  Anti-Baby?  Baby-Neutral?  Well, regardless of what BFHI is implying, it is most definitely not Mother-Friendly.  Here are those Ten Steps:

  1. Have a written breastfeeding policy that is routinely communicated to all health care staff.
  2. Train all health care staff in the skills necessary to implement this policy.
  3. Inform all pregnant women about the benefits and management of breastfeeding.
  4. Help mothers initiate breastfeeding within one hour of birth.
  5. Show mothers how to breastfeed and how to maintain lactation, even if they are separated from their infants.
  6. Give infants no food or drink other than breast-milk, unless medically indicated.
  7. Practice rooming in – allow mothers and infants to remain together 24 hours a day.
  8. Encourage breastfeeding on demand.
  9. Give no pacifiers or artificial nipples to breastfeeding infants.
  10. Foster the establishment of breastfeeding support groups and refer mothers to them on discharge from the hospital or birth center.

Those are awesome recommendations!  For women who are really motivated to breastfeeding and don’t require sleep, with babies who also take to breastfeeding like proverbial fish.  It will be a perfect nightmare for anyone else.  Breastfeeding hurts at first.   Babies do not always take to it right away.  Milk comes in late, or in short supply.  Mothers are human beings who need sleep.  In a Baby-Friendly hospital, if you can’t or don’t want to breastfeed, if your child has trouble getting the hang of it, if you have other kids at home and really need a rest before you go home with this one, well, your hospital stay will be less than pleasant and probably not a great way to start the journey of motherhood.

Well, what does BFHI say about this?

When a mother specifically states that she has no plans to breastfeed or requests that her breastfeeding infant be given a breast milk substitute, the health care staff should first explore the reasons for this request, address the concerns raised, and educate her about the possible consequences to the health of her infant and the success of breastfeeding. If the mother still requests a breast milk substitute, her request should be granted and the process and the informed decision should be documented.  Baby‐Friendly is not about making a mother feel guilty; it is about preventing her regret for decisions made without the proper information. Further, Baby‐Friendly policies protect the mother from the influences of commercial interests so that she may make decisions on the basis of scientific evidence and not marketing material.

We Baby-Friendly hospitals know that grown women can’t protect themselves from Similac and won’t take responsibility for their own decisions.  I mean, we have “allowed” mothers and infants to remain together 24/7 after all.  Mothers who make bad decisions…well, at least we made them sign something acknowledging their unfitness as mothers.  Not to make them feel guilty or anything.

Along comes the Journal of the American Medical Association (JAMA), to save the day.  In an article published in August, a meta-analysis found that such institutional implementation of breastfeeding policies don’t actually have the effect of increasing breastfeeding rates.  http://jamanetwork.com/journals/jama/article-abstract/2571222#.WBjMUzJ8KfY

In contrast to evidence supporting individual-level interventions [which do work], the evidence review included nine fair- to good-quality studies evaluating the effectiveness of system-level primary care interventions to support breastfeeding and reported that there was no consistent association between system-level interventions and any beneficial outcomes.

Well, when the Baby Friendly folks got wind of this, they struck back with a two-page statement that started with accusing the JAMA article of being “filled with comments not supported by research”.  They cited research to support their side (R. Pérez‐Escamilla, J. Martinez and S. Segura‐Pérez, “Impact of the Baby‐friendly Hospital Initiative on Breastfeeding and Child Health Outcomes: A Systematic Review. doi: /mcn.12294.,” Maternal Child Nutrition, 2016) and published an opinion paper in the October issue of JAMA laying out their evidence.

A recent meta-analysis of studies evaluating the BFHI found that the implementation of the BFHI increased exclusive breastfeeding by 49% and any breastfeeding by 66%. (http://jamanetwork.com/journals/jamapediatrics/article-abstract/2546143)

Well, sure, if you bully and guilt women into it.  And who is right about such initiatives anyway?  The people that think it helps, or the people that don’t?  Who the F@#$!% cares?  You know who is right?  The mother is.  Each individual woman, the adult, thinking being attached to the breasts and producer of the milk in question, decides what to do for herself and her baby.  And she’s right.

 

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