Category Archives: health policy

two stem cell and bone marrow registration drive possibilities: please share

Please share these dates:  6/28 and 7/12 when folks 18-44 can register to register to be stem cell or bone marrow donors if a match is found.  The registry needs you!

Those 45-60 can register on line. Please check out information on bethematch.org regarding what this means!  The registry needs you. A cheek swab and a willingness…

Here is the thing: 97% of whites find a partial match.  65% of African Americans do. Other ethnic groups are lower than Whites and barely higher than those of African descent.  For a full match: 75% whites and only 25-35% of those of African descent.  Others are in between. Diversity in the registry is key. The sites for the drive are because they are diverse, inclusive, and social justice minded.  Please come by.

Feel free to share the fliers

Thanks! Sharon

Matt Dobie Immaculate

Matt Dobie St T

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skinny crazy small

I have a young friend who is using theater for raising public awareness.

SCSrevisionDecPost

Actress and playwright Sylvie Mae Baldwin announces the world premier of her original one-woman play skinny crazy small.  And I am delighted to promote it.

The play chronicles the 8 year battle of a young girl with anorexia, seeking to give new voice to the discussion of this illness and to advocate for breaking down stereotypes.

She has an Indiegogo campaign for skinny crazy small that is live for just a few more weeks. Funds will allow Baldwin to pay her director and technical director a fair wage, as well as to rent rehearsal and performance venues. The Indiegogo page has a full breakdown of how funds will be allotted. Please contribute to this project at:

https://www.indiegogo.com/projects/skinny-crazy-small
Your donation is tax deductible, thanks to Fractured Atlas, a non-profit arts organization in New York City. And if your employer matches donations, skinny crazy small can accept those as well!

Great resources to learn more about the show include their website and Facebook page: http://sylviemaebaldwin.wix.com/skinnycrazysmall

http://www.facebook.com/skinnycrazysmall

You can also purchase your skinny crazy small tickets today!: http://skinnycrazysmall.brownpapertickets.com

About Sylvie:

Sylvie Mae Baldwin is an actress, modern dancer, and musician. In May 2015 her original one-woman show, skinny crazy small, will premiere in Seattle, Washington. The play tells the story of a quirky and strong-willed girl’s struggle with anorexia and seeks to promote honest discussion about eating disorders (www.facebook.com/skinnycrazysmall). Regionally, Sylvie Mae has appeared on stage with Antaeus Company (CA), Book It Repertory Theatre (WA), Key City Public Theatre (WA), Lexington Children’s Theatre (KY), Seattle Public Theater (WA), Seattle Theatre Group (WA), and South Coast Repertory (CA). Sylvie Mae also was part of a group of young actors at the Northwest School who spent three years working in collaboration with UCSF Benioff Children’s Hospital tp craft short plays from the poems and journal entries of terminally ill children in the hospital’s ICU. These plays were performed at the UCSF medical facilities and the DeYoung Art Museum. Sylvie Mae trained with Anne Bogart and the SITI Company in New York. She is a proud member of the Actors’ Equity Association. http://www.sylviemaebaldwin.com

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.

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

Patient Centered? Really?

Where I work, we have decided some policy changes.  First of all, let me clarify what “we” means.  “We” is the management of our clinical enterprises, either one or both of them.  I scratch my head in wonder.

Lots of people now are talking about how our relationships with our patients are so important.  Well not exactly.  What they say is put our patients first.  What does that mean really to them? (“them” being the management I mention above in “we”)

They talk about team care, the patient centered medical home.  If we (now I mean me and others actually doing the work) meet some criteria, we get more reimbursement. But is that really putting the patient first?  What are those criteria?

Why is it that no one asks us who see patients what do we do to put our patients first?  Why do they not take it from patients who are satisfied?

But I digress.

Our new policies:

1.     We want our medical assistants to do more, facilitating what the doctors need to do.  They have long templates to complete on multiple visits, much more than the “why are you here?” and its ancillary questions, blood pressure, weight, pulse, respiratory rate, and oxygen saturation (and why does a healthy 20 year old need oxygen saturation anyway? Show me the evidence. I would rather that they remember to obtain and chart the respiratory rate and oxygen saturation when there are symptoms and cause.)

2.     They are to review every medication the patient is on and check them off.

3.     They are to see if any immunizations are needed and to order them for me to sign

4.     If it is a kid for a well child check they are to enter data from a long questionnaire the parent(s) filled out on how the child is doing medically, emotionally, nutritionally, and developmentally.

5.     That is to take place before I see the patient.

6.     What that means is:  our patient calls for an appointment.  Say they have a fever and sore throat.  They get a 15 minute appointment.  Say they are 80 with multiple problems.  They get a 30 minute appointment.  If 1-4 are completed by our medical assistants, I get about 5-6 minutes in a 15 minute appointment and maybe 12  in a longer more complicated appointment.  Do the math.

7.     If I take the time I was supposed to have, I get behind, running the risk of irritating the next few patients on my schedule. If I fill only the time left, I am shortchanging the patient I am seeing, who might feel they did not get to handle enough in the brief time with me.  Oh and by the way, it is fraud if I bill for more.

At the same time, we are pretending that we are being a team.  Don’t get me wrong.  I believe in teams.  I love teams.  It used to be true that our front desk staff were on the team.  They knew the patients when they called for appointments.  They knew who they could squeeze in as an extra, who needed more time.  And our patients trusted them. Now we have a call center for the whole medical center, that I will just say is not the same.  It used to be true that I worked 95% of the time with the same medical assistant.  The patients who call me their doctor knew that medical assistant had their back, whether it was a hug or an urgent medication renewal.  We had a pharmacist and social worker who knew most of our patients and our highest need patients knew them.

That was then and this is now.  Team?  Why is the patient left off the team?  How come they don’t know that the work of the medical assistant is part of their visit?  Why don’t we schedule so that the medical assistant work can happen and I can still have the time my patient and I need to work together on whatever brought that particular person to the visit?  Instead our patients are dissatisfied.  The medical assistants are incredibly stressed with more to do and realizing the more time they take the less time we doctors have.  And I cannot do my job.

This is just one area where not involving regular working stiffs (like me and our staffs) in policy and process development just does not work.  Instead we have institutions trying to get certificates for a reductionist view of what is needed in our encounters, er, yea I mean relationships, with real people around their health concerns.  Check boxes, lists of criteria…most well intentioned and could make for good patient care, but reduced to a get it done without any realism about time and skill and the imperative the patient brings to an encounter with me.

Oh well….I will keep doing what I do.  The next piece may be on Intellectual Freedom, the academy (that would be places where teachers and scholars live in universities), and my institution—that is if I believe the new language in our faculty code that gives us some intellectual freedom and whether I trust that it would supersede the policy of the Medical Center.

The insanity of it all.

A team of four residents (maximum of two at a time in 12-15 hours shifts at the hospital) and an Attending/faculty doctor cares for our family medicine patients when they are hospitalized. Other services have other team structures. Our patients come from our clinic and a number of satellite clinics and are adult medicine patients, women in labor, new moms and their newborns, and some women with prenatal problems requiring hospitalization. The residents are first year (interns) and senior (second and third year).  Our residents are generally smart and attentive and work well with our patients, treating them as individuals with lives outside the hospital and with careful management of the reasons they are in the hospital.  They do a good job running between laboring and delivering women and our very ill internal medicine patients.

Recently when a friend was the attending on the service, a patient with complex medical and psychosocial concerns was admitted.  The team created the time and space to really unearth some of the underlying physical and social challenges faced by this patient.  This led to a carefully orchestrated discharge plan, including where and when she would be seen for ongoing care and what elements that care might contain.

Once again our health care system snatched defeat from the jaws of victory.  The patient’s insurance covered our hospital, but it turns out it did not cover being seen in our neighborhood clinic, which is part of the same health system.  The patient did not get the necessary outpatient care and was readmitted to the hospital.

Last night I heard that one of the major insurers in this area dropped a contract with a major hospital that is used by many physician groups.  Instead they are contracting with another hospital that has its own multispecialty group.  Now all the medical groups who have used the other hospital are rushing to see if the approved hospital will give them privileges to hospitalize their patients. If not, their patients will have to be hospitalized at the approved hospital by doctors who do not know them and whose electronic medical records do not communicate with those of the outpatient doctors from the other hospital.

What has always been clear to me:  the insurance companies will keep their profit margins.  (Oh yes—hospitals and doctors’ groups want to do the same.)  None of this is the recipe for improving health and health status or for curbing health care costs.

The task of trying to provide continuous seamless care for our patients just gets harder and more insane.

Every major country with good health outcomes has lower costs.  Take a look at the expenditure tables in this Commonwealth report.   Look also at : 1) the tables on mortality from index cancers, 2) hospitalizations, 3) deaths in hospital.  For all we spend, we do no better than other industrialized nations spending much less.  According to The State of the Worlds Mothers 2013 report, we are 30th in the world for newborn deaths on the first day of life. 30th!  The top ten with the lowest rates are Finland, Sweden, Norway, Iceland, Netherland, Denmark, Spain, Belgium, Germany, and Austrailia. Our spot, 30th, is worse than any industrialized nation.  Life span, you might ask?  We are 48th in the world, despite our spending.  Each of the industrialized nations with better outcomes than us also has significant government involvement in setting prices and policy, which our electorate continues to fight.

I am far less concerned with the troubles of the ACA website; gee, my electronic medical record crashes on me all the time when I am up late at night doing my charting.  I have to live with it, boot it up again, and still get the job done.  Even fewer choices of where to get care is ok with me.  That may be a price to pay to get more people covered, at least the way we have chosen to go about it in this country.  But if fewer choices and inadequate technology are accompanied by insane lack of coordination of care across locations AND by rising profits of insurance companies, well then, I continue to not understand how Americans can fear a single payer plan.

Assumptions and single stories

It was about 1030 in the evening and I was at home, settling in and at the same time wondering if I would get through the night without hearing from our resident on call. Well, we were both on call, but he would get the first call and then get in touch with me.  I was hoping for sleep and not excitement. On our in-patient service we care for women in labor and manage their deliveries, and then care for them and their newborns after birth. We also care for adults admitted with adult medical (and sometimes surgical) problems necessitating a stay in the hospital. It was calm at that moment and there are no guarantees in this job.

When the call came, I took a deep breath and listened to my resident’s report.  This patient was in the ER and needed admission. He told me she was pretty sick, probably a pneumonia but maybe a pulmonary embolism, and  she was in a lot of pain. On top of her acute problem, she had major chronic health challenges.  She was only 31, but she had a form of muscular dystrophy that was diagnosed during her teens, leaving her with  spasms of some muscle groups and weakness of others. Recently she had gotten her first electric wheel chair. She could transfer from it to a couch or bed, but not walk much more.  What we both knew was that pneumonia, because of her weakened chest wall muscles, could become a recurring event.  What we did not know was what she knew about her life expectancy.

He had appropriately started her on antibiotics and some breathing treatments, and he reviewed the scan that showed it was not a pulmonary embolism. I picked up my things and headed in to see her.

It’s a short drive from my house to the hospital and the drive is through a beautiful wooded arboretumArboretum that always calms me as I race to a delivery or whatever pulls me in during the late hours.  On the drive that night I wondered, what is her life like?  What does she do with her time?  She was wheelchair bound, too weak to walk now.  She had to know her life expectancy was limited.  Our resident has told me she lived at home with her parents and that her mom was in the ER with her.

Another thing was the pain.  She was in pain and asking for increasing narcotics.  I wondered, hmmmm, how much is the sack around the lungs, the pleura, that can really hurt when inflamed and how much was psychic pain?  What was she doing to manage that?  She must have some, right?

Before I was even aware, I had painted a picture of this young woman:  chronically ill, disabled, little life quality, now sick and needing antibiotics and wanting pain medications.

During that week we had cared for another young woman, a lung transplant recipient, who at 21 spent her days at home doing nothing but playing computer games.  I was never able to figure out whether she was depressed, insecure in a world she could now enter with more health than she had as a child, or what held her back.  But knowing she was healthy enough to be in school or working, I had to work to not judge her choices. I clearly was projecting her story onto a reality I was creating in my mind for this woman I had not yet met.

Entering the exam room in the ER, this is what I saw:  a young woman curled into a ball. With every breath she moaned.  She wasn’t breathing fast and because she was not using a lot of extra muscles to breathe, I could tell she was not in respiratory distress (that’s our medicalese for an outsider being able to tell you are having trouble breathing). OK, true, she had oxygen on through those prongs in her nose, but it was not turned up very high, so it clearly was working.

Her mom was sitting at the bedside reading.  60ish, eyes drooping, almost asleep over the book.

I opened with an introduction of me to them and then asked why they were there, apologizing for the fact that they had answered this question already, several times.

“Mom, you tell her.  I’m hurting to much to talk. And I’ll start coughing,” she said.

Her mom told the story of fever, cough, trying the inhalers and chest thumping they had been taught.  None of it worked.  I knew this from the history the resident had obtained, his exam, her labs and imaging studies.  And I wanted to hear it fresh to confirm it.

As we moved along, I was needing to answer that question that nagged me during the drive in to the ER.  What was her life?  As in living her life?  Maybe it was my innate curiosity.  Maybe it was I really didn’t want her to be like the other woman who seemed to have abandoned life.  (Oh, right, those are my standards…and who am I to dictate what is a valuable life?  Have you ever caught yourself in that bind?).  Maybe I really wanted to connect with her.  Maybe all of the above?  (I hate those questions on tests that have is it 1,2,3? or 2, 4? or 1,3? or none of the above. Just sayin’)

Getting to the social history part of our script includes things like where were you born?  With whom do you live? What is your school history?  Do you work? Where? How do you spend your days?  Who supports you? What are your stresses?  (and more, depending on the person and their story).

I opened up:  “I know you are in a lot of pain.  Is this typical?”

She answered, “No absolutely not!”

I countered, “OK, we will help with that. Can I ask you about you and your life?  I am really interested in what school was like, what you are doing now, how you spend your days when you are not in the ER with a pneumonia.”

“Well,” she said, “I am pretty busy.  I work in a book store part time.  I’m a writer so I also tutor kids in their language arts course.  And then there is this start up that is trying to make documentaries about how people with chronic illness have a hard time getting ahead in their jobs. I am a volunteer with that.”

Boom.  Assumptions shattered. I had both made assumptions and given her a “single story.” What the resident told me, colored by the experience with a different patient, shaded by my own biases, and outlined in the drive in had given her a story in my mind that was completely inaccurate.

Yesterday’s post, Tina Shang’s  comments, and a wonderful poem by Nancy Woo all speak to how we make assumptions prematurely and as humans have a tendency to relegate each person to a SINGLE story that does not give the respect that is due to the complexity of the human spirit.

Take a look at this TED talk by Chimananda Adichie. If you have not already seen it, it is more eloquent than I can be.