Category Archives: being human

writing about patients

Sitting in a coffee shop, I anxiously awaited one of my patients. I invited him to meet with me to read the story I wrote about what I learned within our working together over a period of more than 15 years with me as primary care provider AKA PCP and him as patient. But really, who taught whom and what? As editor and author, I am preparing to submit the manuscript for Heart Murmurs ­–What Patients Teach Their Doctors. All of the stories deserve permission from the patients who are described in the book; fewer than half can be reached to ask for this permission.

Some contacts were emotionally easy. There is a chapter on those whose cheery dispositions brighten our days in clinic. When I met with those patients and family members, they enjoyed that I wrote about them in this way. But what about the more challenging lessons? This was the concern as I waited that day in the coffee shop. His was a difficult story, a past experience for him, and a lasting lesson for me. I wondered if he would veto it being in the book. After arriving and some chatting, he read it. I sat there sweating. He said he loved it, and he added some ideas for changing the details that blinded the story. This is how all these meetings have gone: I am anxious and worried and our patients are gracious and grateful for the project, touched that they have taught us. And there is our respect to change what they need changed in the story telling.

Whose story is it?  Of course, whether published or not, it is the perceptions (with all the bias implicit in perception) of the writer. On another level, when told it is the story of the teller and those about whom we storytellers write.  In patient care, some argue that it is always the patient’s story.  I am hoping to respect that view but to have a broader lens.

Reviewing stories with the individuals represented in them is an activity that adds to the relationships we have. One family member of a person who is deceased agreed with my perceptions and contributed details that were important and enriched the story. Several commented on how the story was accurate but that I left out details that were important to them. Often those had to do with what I did for them (much of which I do not remember and all of which was wonderful to hear, but not the focus of the stories). When reading a difficult narrative, several reached out to reassure me or another author. Each of the reviews went well, validating the project and our perceptions of reciprocity in these patient-doctor relationships. For me, what happened in the sharing of the stories supports my belief that this project is worthy for all, not just doctors.

Our physician authors also reviewed their narratives a year or so before publication; for many this review occurred a number of years after they wrote their stories. Older and more experienced, several commented that the revisit was a reminder of how they thought earlier in their career. They could see how they have changed as well as the characteristics that remain.

The ethics of patient protection has muddy waters.  Strict rules do not quite fit. I do believe that when we meet with patients and have conversation about a written narrative, the relationship grows. The co-creation of stories can enhance relationships where patients have the agency and that makes sense to me.  Doctors have written about their patients for centuries. Most of those writings, until very recently however, spoke to a culture where the patient was less of an equal partner in the physician-patient equation than what we currently believe and teach. Certainly, most of those years also preceded current privacy regulations. As recently as fifteen years ago, this subject was not routinely scrutinized. I have no idea where it will be ten years from now.

The emerging ethic about writing about our patients is not well defined. What can we say? What should we not say? Can we even do this writing? On the one hand, memoirs tell only one person’s perceptions. What should determine how a physician addresses this? In prior works, names and circumstances might be changed, but is that enough? Is there a line that is different when we are writing the story about a relationship that is defined by confidentiality?

At the same time that we ask these questions, medical education is clearly recognizing and supporting reflection by physicians. We teach it; we have reflections in our courses. Those of us attentive to this trend have also cautioned our learners, be they students or residents, about blogging and other social media outlets for sharing their reflections.

What are the answers? Others and I hope any answers encourage compassion and reflection in all of our healing professions.  We hope the answers allow the story telling that is so central to our diagnostic and therapeutic work. However these ethics evolve, I hope that we can support stories being told, shared, and valued, while  of course protecting the right of patients to their privacy in this very special relationship.

How do we reconcile these tensions in the best way we can?

In Heart Murmurs, the authors, including me, wrote about what they learned about themselves because of and within a relationship with a patient. We can’t tell that story without the story of the patient. I believe there is tremendous social value in this reflection and in it coming to the public domain. How then do we protect the covenant of confidentiality? Today I sit with a manuscript with over thirty authors and many stories of mine, over 80 total from all of us. Where I am settling, and I hope it is good for the mores of today, is the following:

All stories must meet several criteria:

  1. The value of telling the story is important to our social dialogue. The purpose of this project is one that meets this criteria for all the narratives included in the project.
  2. The story is told in a respectful way for each person represented. All stories, even those that have difficult circumstances, in this book are respectful, though I recognize how subjective perception is.
  3. If a person believes a story is about them, they should not feel embarrassed or shamed, also subjective and hard to predict in many cases.

All stories in Heart Murmurs have names and some circumstances altered, except for two where family explicitly approved using the actual name. I believe all included stories meet the above criteria. Patients of mine have read their piece and agreed to publication, or they are deceased and a family member read it and agreed to publication, or they are deceased and I could not find a family member for review, or it is a composite, or it is many years ago and I could not find the person to review the narrative.

If another physician contributor wanted to attach their name to their story one of the following criteria had to be be met:

  1. The author shared the narrative with their patient and the patient agreed to it being published; or
  2. The patient could not be found for sharing the story and the circumstances are altered for patient protection; or
  3. The patient is deceased and the author shared it with a family member who agreed that it can be published; or
  4. The patient is deceased and no family member is easily found or reachable and the story is generic enough that the identity seems reasonably protected; or
  5. The story is a composite and thus not attributable to one person; or
  6. The story is from a number of years ago and no one could be contacted and it is blinded enough so that identity seems reasonably protected from any but possibly the patient.

If one of these six criteria was not met, a story will say “anonymous” and the author can have a biographical note if they wish. For stories with an anonymous author, with circumstances changed, and with the authors being from all over the country, I believe patients’ identities are reasonably protected. Even if a person or a family member reads the book and identifies with the circumstances in a story and wonders, their identity should be protected from others. No persons should be certain it is really about them. What I also know: the lessons in every narrative in this book have been experienced in one way or another by individuals and their physicians all over our country.

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Fragments

Sometimes those fragments of time that occur in the cracks between the “regular” stuff of scheduled life are so full that there is no time to even contemplate a blog entry. There are simply no moments left.

We hope we can appreciate the meaning of what is happening in those cracks.  And then there is “now, back to our regularly scheduled show.”  This site just fell off the shelf for a bit.

Here is the big news: we have a publisher for our manuscript of narratives by physicians (and me as editor/author) sharing how we have been affected and changed in our relationships with patients. This is work I have been doing for years and compiling/editing for over 4 years. That’s one reason for no blog: trying to bring us and it together to get the manuscript in. That means: I need from each contributor three things: their bio, is their story blinded adequately, and do they want their name attached or to be anonymous?  Simple no? Not! Of the 30+, I still need to track down 5. Then I need a permission slip signed by each. I may need to appear in person on doorsteps all over the country to get it done.

I need to complete the editing and proofreading,  find some sample cover images, get a head shot (of me), a short statement for the back cover, proofread the bios, maybe write an epilogue.

And anyone have friends who are famous who will look at the manuscript and write an endorsement for the back cover? I wrote to Gawande, Verghese, and Remen and they did not respond…next? One of my sons says, “Ask em again.”

My time to edit and herd contributors is cut short by other moments that I can’t just ignore, as excited as I am that this work may actually see print.

Life happens. The book is all about relationships. I simply cannot shelve them while trying to make the book happen.

I am meeting with the patients about whom I have written and if they are deceased, I am sharing the stories with their family members -if I can find them. This is a process that is full of meaning for me, for the few other authors who are also contacting the subjects of their pieces, and hopefully for the people we are contacting.

Before each meeting, I feel anxious about sharing what I wrote. How accurate are my perceptions and descriptions? What will my writing bring up for the person (or family member) about whom I wrote. The narrative is really about what I learned about me in the context of that relationship, however that means telling the patient’s story. Funny, but revealing my lesson does not leave me feeling vulnerable. Instead, I am most concerned how they feel I represented them or their family member, because our connection in reality is just a small bit of who they are or their life story.  So far, and I only have three more people to meet, no one has had big concerns; all have had things to share that either enrich the story or give back to me. I will try to write this piece in an epilogue, but doubt I can do it justice. There is a ripple effect when we are authentic about this reciprocity piece in relationships. Moments…they can build on themselves like waves.

Not a single story

So many layers.

It always amazes me how we bring many lenses to any situation and these are how we see the world. Some, well maybe most of us, have several lenses, or maybe should.  What do you think?  Which lens rises to the top depends on so many things.

In the story of today, shall we look at this through the just get the person to safety lens?  How about the really weird, as in I can hardly believe I felt this and though it cannot be close, here I am, standing in another’s shoes lens?  Or the health-care system, it really can be better lens?

Or all of the above.  They all fit for me. I like the notion of multiple views.

The story:

It was a busy week back at the ranch, er job: several evening events, a night on call, but no matter.  I had made plans to take Friday off and even arranged coverage for Monday; we were going to the snow, heading for Canada.  “We” would be my neighbors and me.  They drive, I have the housing arranged: me in one room, their daughters in the other, the parents in the living room.  A close friend’s daughter with a season pass wanted to come too and she could sleep in my room.  All set.

Then my friend, mom of the kid who would be my room mate, decided to rent a place in the same building and come as well with another friend of ours.  All good….except she was tired and it was a long week and she was ambivalent.  Her daughter and I both talked with her, and in the end she decided to come.

Thursday evening we all (including my friend’s husband) were at a fund raising dinner, and all seemed ready for the next day.  I arose Friday, packed, and my neighbors and I hit the road.  Many hours later my friend, her daughter, and our other friend arrived.  My friend did not feel well, was nauseated and had abdominal pain all day.  She had not eaten since the night before.

Saturday morning it seemed clear that my friend needed to be seen at the clinic.  She, our mutual friend, and I (all family medicine doctors) feared appendicitis. While my neighbors, my friend’s daughter, and I went to ski, the other two went to the clinic.  By lunch, we knew. Her daughter and I headed down the mountain:  appendicitis.

We were in a location with no hospital.  We knew the ones along the way from there to Seattle.  Her husband was not with us because he had been on call, but had gotten sleep and was able to drive to the border and meet us. We knew there were surgeons in Squamish, then Vancouver, then Bellingham, then Everett, hoping to get her to Seattle.

The punch line is that she did get to Seattle, had her surgery around midnight Saturday night, and was home Sunday evening.

But that in not the point of this post.

I mentioned three lenses above.

Get her to safety: Who should go, where to go, who helped us know?  We had many possibilities.  Who should go?  Should her daughter drive her to Seattle?  What if she got sicker along the route and a doctor was not with her?  How luxurious that there were two other doctors along.  And who should go?

Stand in shoes:  The two doctor friends (Diane and me) decided to drive her to the border. Had we crossed the border, the wait to go north was close to two hours. We did not want her husband driving across. And she did not want us crossing to deliver her and face that wait. We opted to park at the Canadian border, talk to the guards, walk to the US border (about an 8 minute walk, in the pouring rain, our friend doubled over, us carrying her bags), talk to a US guard who by cell phone instructed her husband how to get to us without getting in the 90 min line, and delivered our friend to her husband.  Something hit all three of us, only shared after the fact. What we felt walking across, pouring rain, was a sense of vulnerability. It was a trek. 

Although we knew we had what we needed to get our friend across to the USA and us back into Canada, we were nervous and vulnerable.  How is it for others for whom the border cross has even higher stakes ?

We stood in line at the US station for pedestrians.  There were border patrol folks milling around.  It looked like they were not attentive to the lines and were not doing work.  We stood there.  Our friend was getting more and more hunched over.  We were scared. How much time did she have until she ruptured that appendix?  Finally we asked for help. The guard heard us and did help and a few minutes later our friend was on her way south and we two others were trudging back to Canada.

What do others feel in that walk between borders?  Really, we all knew ours was only 8 min between the two borders in that nomad’s land and yet each of us silently felt that anxt: what if it does not go well?  We all have enough life experience to know that what we felt had to be, given the certainty of our getting across, just a tiny fraction of what many millions feel when crossing a border under duress.

And the health care system:  Our friend had lab results and CT scan that showed the appendicitis.  We had seen the monetary charges: they were half what they would be in the good old USA.  Yet people complain about single payor.  Really? 

OK, once we handed her over to her husband, they were in the good ol USA.  One hospital/ surgeon on call would require she go to the ER.  Even if they accepted the CT scan and labs, there is that charge on top. (and by the way, there would be the delay and risk of rupture) A second hospital/surgeon would admit her straight to a room and then the OR.  Guess which was chosen? Surgery that night, home the next day.

Patients or money first?

What do you see in this story

Hearing Loss—Take Two

In my last blog on hearing and hearing loss, I mentioned how a lot of what most of us actually “hear” is with our eyes.  We unconsciously add to our sound hearing with context and even lip reading and intonation.  I would quote proportions and give a reference if I could find it again.  Oh well, I csan’t.  Tonight I went to see The Lego Movie at the advice of my son, Nicholas.  Lego characters do not really move their lips, right?  During the first few minutes, until the story line was established, I thought it might turn out to be a worthless venture with my comprehension being about 70%.  Once we were about 5 minutes into the movie, I could much more clearly “hear” the characters’ lines–because I had characters and story line. It was a very interesting verification of what I had read, tonight experienced first hand.

That brings me to the –drum roll and trumpet blasts–hearing aids. I opted for the ones recommended, that sit in the ear and supposedly do a great job of not magnifying surrounding sounds and would work for work, which for me means 1) hearing soft spoken people in meetings, 2) being in group sessions and hearing various people, and 3) using the tools of my trade: the stethoscope.  Of course I also hoped that the car radio could be at a lower volume and that dining in loud noisy restaurants would be easier.

They get a grade of D+ -maybe- except in one crucial area they get an F and therefore will not work.  I feel like the princess and the pea.

1.     In the car:  Wow, I can hear all the other cars and my car’s quirky noises.  Cool.  But I cannot turn down the radio volume.  If anything I need it louder to hear over all the “new” noises I can hear.

2.     Small groups at work:  not yet tested.

3.     Restaurants:  I used to love eavesdropping on tables near me.  I am happy to report that capacity might be back with the aids!  Hearing my dinner companions however is not improved at all.  Like the car radio, the indiscriminate pick up of the microphones does not make the near and dear clearer.  Do I want to eavesdrop or do I want to be part of the dinner conversation at my table?

4.     And the final:  I can hear NOTHING of the heart with my stethoscope and lung sounds are 90% blunted.  So this aid will not work and will be returned.

I know there are some that apparently filter better and they had downsides that left them not recommended (I cannot remember why).

We would think that the technology that is out there would have this figured out. I am back to the drawing board, trying to do my part to do my share of the conversations in my life. It is not so simple as just go get a hearing aid.

What?

During the last years of my dad’s life, we all knew his hearing was not great.  I’m not sure why he did not get hearing aids.  We knew that large noisy groups made it hard for him to socialize and that he shied away from those.  He could hear us in small groups or one on one conversation, mostly.  I don’t remember feeling annoyed with him or him getting short with us when he could not hear. He was career navy and served in WWII, Korea, and Viet Nam so I know he had noise exposure as one culprit in his hearing loss.  And there was age.

I do remember feeling I wish we did not have to plan events so that he could be comfortable.

This brings up the question of who is responsible for what when there is a change in physical ability?  How much of the burden is on the person whose health and ability status changes? What about those in that person’s life?

Next week I will have molds made for hearing aids.  Some of my hearing loss is just family and age, I am sure.  I also sing in a group and in a concert two years ago, the tenors to my left were magnificently loud in several pieces and I heard immediately the tell tale ringing that did not stop when I left the concert and for days later.  Actually I still have the tinnitus, more in my left than right ear.  Luckily for me it does not drive me batty, either because I am already batty or because I just have enough going on that it is not on the radar of my life.  But I knew after that event my left ear in particular was in deep trouble for hearing.

I say “what?” a lot.  I struggle in my groups with students if the quiet students do not speak up.  My kids are frustrated at having to repeat themselves.  Maybe my students are too.  My friends tease me.  I say “wait til you have these shoes on…see how it is.” I laugh with them because I am good at laughing at myself.  Some people seem irritated when I ask for them to repeat themselves.  I feel “less than” even though I did not make this happen other than to sing next to loud people.

Soon after that concert a very close friend and I were at her family’s cabin.  I was saying “what?” a lot.  And she would then yell her next response, well not yell loudly, but much louder than it needed to be.  I got irritated and suggested that if she did not mumble I could hear her, that it was articulation not loudness that was the issue.  She retorted that I was going deaf and she did not mumble.  I told her I had an audiology appointment already made and that I still believed she mumbled.  Within the week I found out the degree of my hearing loss and mutual friends acknowledged that she does “mumble” a bit.

Loud places are hard.  It turns out that with sensorineural hearing loss, part of what happens is not only can a person hear less well, they also have a shift in the noise comfort level.  A normal hearing person will say “it is bothering me” when the noise level is at a certain decibel level.  A sensorineural hearing loss person will say it is bothering them at a much lower decibel level.  And that is independent of what they can hear in language at a given level.  I have had three hearing tests.  The first two my results demonstrated this.  In the third I “cheated,” because I knew of this concept.  I weathered the noise far beyond what was really tolerable…and I passed.  Yay me!  Not.

It turns out that a lot of our communication is not from hearing.  It can be body language, lip reading that we don’t know we are doing, etc.  The context helps.  Some people are better at accommodating, figuring out context and filling in the blanks.

And in some settings it is hard to ask people to speak up, or say it again.  I can understand why my dad and others with hearing loss tend to withdraw.  I have wondered if I should stop my working in the work I do.  Is that wondering because I question my skill or because I am embarrassed or because I am just tired advocating for myself?  I honestly don’t know. I just feel like it is hard, my problem, and well…I guess I just don’t know what should/could be a reasonable expectation in differnt relationships.  Many have trouble hearing our department chairman.  Is that my problem and should I just pretend I hear and be quiet?

Last week I felt like a sitcom.  My younger son yelled down to me from upstairs. “Mom, can you get me some paper?”  I yelled back, “what do you need paper for?”
“Mom can you just get me some paper, now?” I answered, “Nick, just get it from the printer, which is right up there with you. Won’t that work?”  He then came down stairs looking crosseyed.  “What is wrong with you?”  “What do you mean,” I retorted.  “You want paper. There is tons upstairs.” “Mom, I said, will you do me a favor!?” We both collapsed in laughter to his words, “get that hearing aid.”

I found a website that talks honestly about what others can do.  I know what I need to do.  Of course I hope the aids help.  The ones I tried before did nothing.

Here are tips if you are a normally hearing person with someone in your life who is hearing impaired from the Hearing Loss Association of America:

Tips for Hearing Person to Communicate with Person who has a Hearing Loss

Set Your Stage

  • Face person directly.
  • Spotlight your face (no backlighting).
  • Avoid noisy backgrounds.
  • Get attention first.
  • Ask how you can facilitate communication.
  • When audio and acoustics are poor, emphasize the visual.

Get the Point Across

  • Don’t shout.
  • Speak clearly, at moderate pace, not over-emphasizing words.
  • Don’t hide your mouth, chew food, gum, or smoke while talking.
  • Re-phrase if you are not understood.
  • Use facial expressions, gestures.
  • Give clues when changing subjects or say “new subject.”

Establish Empathy with Your Audience

  • Be patient if response seems slow.
  • Talk to a hard of hearing person, not about him or her to another person.
  • Show respect to help build confidence and have a constructive conversation.
  • Maintain a sense of humor, stay positive and relax
Tips for the Person with Hearing Loss to Communicate with Hearing People

Set Your Stage

  • Tell others how best to talk to you.
  • Pick your best spot (light, quiet area, close to speaker).
  • Anticipate difficult situations, plan how to minimize them.Do Your Part
  • Pay attention.
  • Concentrate on speaker.
  • Look for visual clues.
  • Ask for written cues if needed.
  • Don’t interrupt. Let conversation flow to fill in the blanks and gain more meaning.
  • Maintain a sense of humor, stay positive and relaxed.

Establish Empathy with Audience

  • React. Let the speaker know how well he or she is conveying the information.
  • Don’t bluff. Admit it when you don’t understand.
  • If too tired to concentrate, ask for discussion later.
  • Thank the speaker for trying

I return to the question.  Who has responsibility for what? What is your role?

happiness moments

For my birthday (11/5 if you want to remember it in the future) my son gave me The Happiness Project. by Gretchen Rubin.  I thought it was an intriguing choice.  With respect for him, I won’t spend words talking about the personality styles of my sons.  What I wondered was whether this was something he thought particularly appropriate for me or was it a projection of his sense of self.  Fairly soon after giving it to me, he checked in. “So how is the happiness project going?”

That makes the question clear, right?

I have been formally and informally evaluated (by numerous bosses, co workers, students, residents, and patients) as being serious, but with a very in tact sense of humor.  I have not been evaluated as seeming unhappy. OK if you asked the 7 full or interim chairs of my department if they think I am happy, I confess I have no idea what they would say or what their criteria might be.

Do you have a clue whether your bosses, your co workers, your friends, your family think you are happy?  And if you drew a line from 0 to 100,  0 being morbidly depressed and unhappy and 100 being ecstatic all the time, where would you rate… self rating or by others? I admit to a slight bent towards paranoia since getting the book, wondering how many, like my son, think I will benefit from a happiness project, well any more than any of us could. ( i think we all could, but not at the expense of that which drives us to seek and work for a world that is better…OK, I think it is how to have both.)

I am reading the book.  There are great tips.  I like the “enjoy the now”, “sing in the morning,” and many more that challenge me.  Others I do, routinely.  And I guess I am glad.  Think of the Eeyore my son would think I am if I were not generous, open to people’s feelings, looking for ways to be off the path, collecting (ok very small that way…two means a collection).  I do sing, not in the morning.  I need other voices around me to find my part and I don’t have other voices with me in the shower, not that I am opposed to it, just is not there. I think I have done a good job at stop nagging.  As for not wanting appreciation: I plead I am human. OK, I will take it on…not being a martyr in the not wanting appreciation, that is hard.  I am human.  It is a work in progress. I am a work in progress.

Write a novel? Forget about results? OK.  I have not written a novel.  I have written a manuscript.  And I cannot forget about those results.  I am carrying the stories of many people, including the 30+ contributors to this work, and feel a responsibility to bring it to print.  These narratives need to be shared. What shall I do next to get it there while waiting for replies?

Happiness…I think I have it a lot of the time and it is multi-tasked with the things that weigh on my mind: things out of sync with my values and yet realities at work, my kids’ health and challenges, the fears of waiting for the other shoe(s) to drop, and wanting this manuscript to become a book.  In the meantime I will read and find those tips in The Happiness Project that can grow me and maybe reassure my son that I am not Eeyore.