Monthly Archives: November 2013

Tribute to Stan

Stan is the person in the piece below.  His impact on my life opens and closes a chapter on those who bring joy to our lives in the yet to be published work, Life Lessons, What Our Patients Teach Us.  I edited those two pieces to be one narrative, the one I submitted to the PNWA literary contest.  On this day after Thanksgiving, I remain happy for our friendship.

 The Caregiver

      “There is a Mr. Dorfel to see you in waiting room,” was the overhead page.  I was finishing notes from my morning clinic, but went out to greet him in our empty waiting room.  As soon as he saw me, he jumped up, same plaid flannel shirt, dentures clacking, toupee askew, and wrapped me in a big hug almost dropping the several rubber-banded bundles of papers he clutched in his hand.  “Dr. D, we need to talk.”

            Hugh and I went way back.  He had been my patient at the community health center, and he briefly followed me to the university medical center when I left the clinic and changed jobs. When the university billing style and increased cost became more than he cared to manage, he had returned to the health center for his medical care.

            As his doctor at the health center, our relationship had a rhythm: six months (summer and fall) of fairly frequent visits for his high blood pressure and preventive care and six months (winter and spring) of physical absence when he would escape to Mexico with its lower cost of living and warm winters.  When he would return, his line was the same.  “You know Dr. D, I would stay there all the year, but as you know, yours truly does not take that heat.  And Seattle is dandy, but on that medicine you give me, my hands are just too cold for the winters.  And Mexico is just marvelously wonderfully inexpensive,” he said, drawing out the marvelously like someone from the upper west side talking about last night’s gala.

            His Mexico months were punctuated by long, rambling, and usually tangential letters, handwritten or typed on the old Royal typewriter that he hauled back and forth between Mexico and Seattle.   He wrote on the politics of the day, his days in Mexico, my doctoring, stories he read in the New York Times, and other topics on his mind. A diehard liberal and pacifist, the envelopes carrying his letters always had several New Yorker cartoons folded inside.  Regardless of who was in office and how critical he was of the moneyed interests, he would pepper his long monologues about the state of the world with his belief in the goodness of some, also always asking after each staff member’s and my children’s health followed by many repetitions of “and give my hearty best to them.”  Hard to read in his scrawling hand and sprawling grammar, we would pass the letters around, and amid laughter and delight, we would each take a turn at trying to decipher the hand writing and to translate the run-on sentences into some sort of comprehensible message.  We all knew another autumn would come and Hugh would be back visiting the clinic and stopping at each person’s desk to compliment everyone he encountered.

            When he was in Seattle and still had his apartment, he would take the bus daily to a post office all the way across town where he kept his post office box. 

            “This way,” he said, “I can see all my old friends all over town.” 

            These old friends included the bus driver, the regulars on the city bus, and his favorite grocer where he bought bags of fresh vegetables and grains every day for cooking in his main utensil:  his pressure cooker.  He befriended everyone.  Hugh stated several times, “If I can make someone’s day brighter, why not?”  He often told me what a good person I was, whether he was referring to my doctoring, my mothering, or my personhood, and he was generous with these acknowledgements for pretty much everyone he met along the way. 

            One of his favorite refrains about his health went something like this: “You know I should be dead.  When I was thirty-five, that one doctor told me that I would be dead by the time I was forty.  You know it was (and, by the way it still is) that high blood pressure of mine, through the roof, but I told him it’d always been that way and you know it’s still that way.  It’s just me, blood pressure always bouncing all over the place. And here I am, still kicking.  Who would’ve imagined?”

            Yes, there he was in my office that day: close to 80, his toupee even more bedraggled than the last time I had seen him, with hardly any worldly goods and reasonably good health, other than his high blood pressure and formerly large prostate, which he loved to tell any listening audience was the largest his surgeon had ever removed.

            Most of us have some optimists in our midst. How many of these patients know their effect on us?  My clinic day is scheduled with appointments every few minutes.  In some specialties, an initial consultation might be allotted more time, but for most of us, wherever we are caring for patients, the pace is quick.  A first look at the schedule before starting a clinic gives me a sense of whom I will be seeing.  Sometimes that glance can open a floodgate of feelings ranging from anxiety about not knowing enough, to distress when seeing a challenging patient on the schedule, to delight when certain other patients are scheduled.  There really are those patients, like Hugh, who quite simply brighten my day.  These patients are just as likely to have major illnesses and some of them are dying when we work with them.  Even then, some people experience life in ways that transcend what is difficult —and it is contagious. 

            I was delighted to see Hugh that day when he appeared, unannounced, in my clinic. I had not seen him for over two years and suggested we get lunch. 

            “Doctor D, I need you to be the executer of my will,” he said, producing a card from that rubber-banded bunch of papers and handing it to me.  “I have this attorney, see it’s right here on her business card, and she says I need to name someone.  I won’t ask my kids.  I don’t have anything to do with them.  And I can’t ask my apartment manager as much as I know she is a great gal. You are the only one who can do this.  It should not be any work.  Really.”  

            From there he rambled on about his latest six months in Mexico, how his blood pressure was doing, and he reported on the health and welfare of the my former co-workers at the community health center. 

            “And how are the boys, Mr. Matthew and Mr. Nicholas?” he asked, always attentive to hearing how our family was faring.  During occasional pauses in his monologue, he polished off his bowl of hot and sour soup without ever getting a direct answer from me about his request. Instead, I asked him to come meet me again in a week.

            It had been years since I had been Hugh’s doctor, and I knew his social situation.  As his doctor I had never succeeded in getting him to tell me about or deal with his estrangement from his son and daughter.  At our next lunch, I agreed, conditionally, telling him, “This can only work if you stay in touch. I can’t have you here or Mexico and have no idea where you are or how you are doing.  You have to become like part of our family.”  

            He dutifully stayed in touch with those long letters when he was in Mexico and soup dates when he was in town. After several years, Hugh’s health declined. I helped him find assisted living and we packed up his apartment, all of two suitcases of clothes and personal items, a small table and chair, two boxes of books and his papers, his Royal typewriter, and a few kitchen items.  We recycled 16 brown grocery bags stuffed with the plastic bags that had held his vegetables and grain, and he relinquished his pressure cooker. 

            “Don’t expect me to learn how to use that microwave thing I now have instead of a stove, Dr. D.  I had one of the first automatic cars in the country because yours truly could not learn to shift with a clutch. See this?”   he said, swinging his can opener around his head.  “This is my third like this.  You can’t even find this kind any more, except at Goodwill, and I can’t use the new kind, and I am not talking about the electric new kind.”  

            His Mexico jaunts ended; my sons got to know him better and he became a more like a member of our family.  We would visit him, shoot pool in their recreation room, and carry on about the state of the world, and he would come to our house for special occasions.  Several hospitalizations and a number of years later, he moved to a skilled nursing facility where he lived until he died.  

            In those last and nursing home years, Hugh became the hat man.  In his sixties and seventies, he had worn that toupee which aged into his 80s, becoming increasingly worn, dirty, matted and infrequently shampooed.  During one hospitalization, his nurse supported my ultimatum, “lose the wig and be happily bald, or buy a new wig.  This one is a rat’s nest and is going in the garbage.”  With flourish, I threw it in the trash and he acquiesced.  He gave up the toupee and never replaced it.  Instead he donned hats.  Always a bit unusual in his dress, and willing to be flamboyant, he started accumulating baseball caps, beanies, and hats for each occasion.  He had a witch’s hat, a leprechaun’s hat, a Santa hat, and a pinwheel hat.   On my visits, I would catch him, scooting up to the desk in his wheelchair, up to three hats on his head at one time, and smiling at the nurse, turning to me, and saying, “This is my friend, Martha, and she works so hard and is the best nurse here.”  Later he would tell me, “We need to show more appreciation for the staff here.  They work so hard and people are always complaining.  I don’t know why they have to complain.”

            This man brought a smile to my face, whether I was seeing him in clinic, reading one of those quirky barely understandable letters, picturing him heading across town to get his mail or across continents to Mexico, watching him interact with nursing home residents and staff, or sitting at our dining room table. 

            He took me aside on one visit to discuss another idea of his.  Though he would have virtually no money left when he died, his wish was to give his little reserve fund to the health center where he received care for over 20 years.

            “I want you to give what’s left to the clinic staff so they can have some relaxing times,” he instructed me.  “They do so much.  Do they ever have time or money for a party? You give it to them when I’m gone.  Tell em how much they mean to me.”

            “Hugh, why wait until you’re dead!” was my immediate reply.  “I think you should give it to them!”

            “Doc, I’m not much for speaking in public; I don’t think I could do that.  You just handle it ok?”

            “Look,” I rolled my eyes.  “Your speaking ability is not the point.  I would like you to see how much you touch them and it will mean a lot to them to have you give it to them.  I’ll take you.  This is not like learning a new can opener.  If you can’t talk, I will help, but this is your gift, not mine.”

            Finally I convinced him to give it to them while he was still alive.  He and I went to a clinic staff meeting for the presentation. 

            “You work so hard, too hard, and I want you to have some time to take it easy, relax, just have some fun,” he told the staff, his voice cracking and tears streaming down his and many others’ faces.  The standing ovation honored the caregiver in the room.small Stan and Allie

 

 

Carrying stories

A few years ago I was given a mini sabbatical. I applied for it because I had collected about 30 stories written by other physicians in workshops a colleague and I offer. At the end of each session, I invited participants to give me what they had written with the expectation that maybe I would put them together with my stories into a manuscript for publication.  Fewer than a third gave me their stories and I had them transcribed and then started to work with the authors to edit and expand them. By the time I was granted the sabbatical, I was ready to explore the meaning within all of the writing, mine and that of the contributors.  I wanted to organize a coherent work. In my view, sabbaticals should also provide breathing room for rest  and for space where new creativity can surface.

The workshop we offer opens with a discussion of relationship centered care and some tools (mindfulness, narrative, self-awareness) and has a writing reflection where participants write about how they have been affected and changed as people (in their personal lives, not their doctor lives) within a relationship with a patient.  The sessions then have sharing of the writings with a focus on reflective listening. We offer these to resident physicians, medical students, and seasoned clinicians locally and nationally.

I knew the project had worth.  Physicians who have taken the workshop tell me their lives are fuller after going home and finding opportunities to spend some time sharing what they have learned from patients with those same individuals.  My patients have always been excited about the project and ask me weekly where they can buy the book. I shared the concept and writings with many people, most of whom were not physicians, in two writing workshops, Write on the Sound two years before my sabbatical and the Healing Art of Writing as the kickoff to it. That was 2010.

The summer of 2010 freedom was cut short by some family needs, but I was able to identify the main themes and see a form to the work. During the next year and a half I continued to pull it together, writing new material, editing, working with contributors, and putting out feelers for an agent, all of this in those little cracks in the weeks and months that were already overloaded with family and work.  A few vacation weeks found me with my laptop in a local coffee shop writing and editing.

By the winter of 2012 I had a rough draft of the entire manuscript and knowing I would be heading to Hedgebrook that fall, I was able to take a deep breath.  Three weeks would be mine to bring this project closer to completion.  I wrote about Hedgebrook in an earlier post; what it added to the quality of the work is immeasurable. I finished editing over the next months with a goal to find a home for it through the Pacific Northwest Writers Association and their annual conference.  My hopes grew when a story from the manuscript, “The Caregiver,” was a finalist in the short non-fiction category.  The conference has Pitch Sessions, where writers get 4 minutes per pitch with up to 6-9 agents and editors (from publishing houses). I was excited to share this work with as many as I could.

Picture the scene:  a big ballroom type space in the hotel.  Along the back wall there are between 25 and 30 agents and editors sitting in one row facing the doors, one long table in front of them.  Each has a chair across the table, facing the editor or agent.  At the gong, about 150 people enter the room and form lines in front of the person they desire to pitch.  A bell rings.  All of the firsts in line go and sit in a chair and pitch their work.  At four minutes, the bell rings and the next person in each line goes to the chair.  If you just pitched someone, you can go to the end of a different line.  At the ninety minute mark, the session is over.

At the end, I had seven people asking for the manuscript and the book proposal, a many paged document that speaks to the work, its audience, its competing works, the publicity and marketing plans and more. Hopeful for a home, I got those materials to them within a few weeks of the end of the conference. I am still waiting to hear from all but one.

Everyone has told me how much harder it is to find a home for a book in this market than for a paper.  They are right.  I have many publications in journals that are research and narrative.  This has been a trial in patience.  Finding time to move this project along is challenging. Keeping in touch with the contributors and hoping they do not lose hope adds another layer. When does patience become inertia?

What surprises me the most is the sense of responsibility I feel.  I am a person entrusted with a very large parcel of human truth that should be shared. Is that a ridiculous and hubris filled notion? I opened each pitch with, “When was the last time your physician shared with you what you mean to him or her?”  The universal answer was “Never.”  Knowing we matter in any relationship, that there is always reciprocity, is important for all to hear.  We recalibrate healing relationships when we teach patients that they are giving and not just receiving and when we teach those who care for patients to remember that they are also beneficiaries.

This is what I carry with this manuscript.

Feeling like a peddler of some elixir, I need engagement by someone  with the capacity to distribute it. I worry that I am somehow not selling it well enough and I fear that no one with that capacity will really understand.  It is hard for me to hold.  Lately, I have a lot of shoulder pain.  I believe it is where the weight sits squarely, the dynamic tension between the need to be patient and defining the alternatives.

Single Story continued

It is the night before Thanksgiving, and here I sit eating potato chips and promising myself a glass of wine when I finish this post (neither of which is good for my blood pressure or my cholesterol, speaking of the choices theme), needing to make stuffing and cranberry sauce tonight, shallots and brussel sprouts tomorrow,  one son downstairs viremic, the other just here from SoCal out on the town, and me, trying to sort out what has been swirling in my mind.

What to post?  Oh yes, and Allie the aged dog is scratching at my study door.  If I let her in, she will whine for attention.  If I don’t she will not go downstairs and bug the 25 year old. I could post about how my sons already see me as a daft old woman.  NO that is for another day.

Keeping it simple, I’ll stay with the theme of the single story.

I have a lot of friends who are anti military. I don’t agree with many of the actions we have taken in the world either.  And I want there to be more than the military as paths towards maturity and upward mobility available to poor, struggling in school, and minority youth. If it were on an equal footing with college, vocational training, being an entrepreneur, and if it did not involve a higher risk of dying, well, I might feel differently.  Point is, as I see it, though  no country is without a military.  So I’m not going to dis its existence; it seems to me it has to be.  I have many thoughts about war and its consequences and about our politics that have led us into war, but that too might be for another day.  I do accept that we will have a military. Do I want my kids choosing it given the recent decades of engagements?  no. Would they have my support if that were their choice?  A reluctant yes, because I do not live their lives.

Second point is:  how do you see people in the military?  Regardless of your political positions, how do you see them?  Do you have a story for the soldiers? the marines? the navy? the enlisted vs the officers?  the policy makers vs those who follow the orders? How does it break down for you?

I suspect many of us have a single story, whether it is pro or con.

Try to put yourself back to the early 1950s.  Picture a navy ship, a destroyer.  Ship and MascotIt’s during the Korean conflict.  Many if not most of the sailors on this destroyer are 18-20 years old, their first time away from home.  Sure, they had their basic training, but this is really away, three months “at sea.”  There is a captain of this ship.  His job is to get them to the part of the Pacific where they can do what the Department of Defense tells them to do.  It is a war in the eyes of the US Government and the military.

Draw a picture in your mind and start with the story of these young sailors and life on the ship in the middle of battle.  Do the same for the guy at the top, the captain.  His job is order, following orders, keeping everyone on task and the ship afloat. Maybe jot down your thoughts.

My father was the captain, in his thirties. dad3 Fast forward to 1969, and he was in some major position and stationed in Newport RI.  I could not drive my car on base (where my parents lived) with my anti-Viet Nam war stickers on my car. People hearing I was raised in the navy often gave me a single story: how I could come from that family?  They gave my dad a single story:  military brass are authoritarian and militaristic. On the other side, some could not understand the complexity of my beliefs. I was not anti-American  The contradictions and the huge space between two absolutes are sometimes so hard for people to handle, when in reality they are what define and embrace us all.

How could my father, this person who was in Pearl Harbor when it was bombed, on the USS Minneapolis when it was torpedoed, losing many men (and limping into a harbor to rebuild the hull out of bamboo and sailing back to mainland) be anything more than a true military man? How could he then go on to serve in both Korea and Viet Nam and not be locked into one view? Both ends of the spectrum would see it that way.  Do you inhabit the ends of the spectrum? And how many actually do?

I have many stories that round him out to the complex person he was. He was a true military man who loved his profession, not war, his profession—and he was more.  A few years ago, some of those 18 year old sailors, now in their 80s found my sibs and me.  One shared a letter that his parents had saved, sent to them back in those Korean War days.  It is below and I hope it shifts your lens from the picture you had. If you click on the image, it should enlarge so you can read it. As we approach Thanksgiving, my hope is that we all will be thankful we have the capacity to use our lenses to be wide angled.

Untitled 2If you missed it yesterday, I still recommend the talk by Chimamanda Adichie.

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.

Living and Limits

I am posting a woman’s entire post below because I found it helpful and provocative.  If you want some other sources that suggest we should really hear this story, look at Josh Freeman’s blog today.  He is talking about what it will take to improve health (and that will also lower health care spending) in our country. He links his thoughts to an earlier post of his, Capability; Why people may not adopt healthy behaviors. That earlier article contains some useful references to rattle your brain.  On a personal level, what really drives each of us in the choices we make?  Some of his references take a scholarly look at that question. None are quite as honestly blunt as the post I quote below.  While I might see the choices available to the writer as more numerous than the writer sees, that is not the point.  And of course my job is to offer what I see and seek ways to steer someone to more healthy choices that might improve their health status, regardless of the givens of their daily life, burdens, and realities. The point is that if we want to improve health, we sure cannot do it from a perch of I never really sat on your perch.  I hope you will read Josh’s post today and his 2010 one along with the one below and savor the richness of who we are as people/individuals.  We each are trying to get through a day, live a life, always in the midst of the expectation that we also make healthy choices.

From killermartinis.kinja.com

“There’s no way to structure this coherently. They are random observations that might help explain the mental processes. But often, I think that we look at the academic problems of poverty and have no idea of the why. We know the what and the how, and we can see systemic problems, but it’s rare to have a poor person actually explain it on their own behalf. So this is me doing that, sort of.

Rest is a luxury for the rich. I get up at 6AM, go to school (I have a full course load, but I only have to go to two in-person classes) then work, then I get the kids, then I pick up my husband, then I have half an hour to change and go to Job 2. I get home from that at around 12:30AM, then I have the rest of my classes and work to tend to. I’m in bed by 3. This isn’t every day, I have two days off a week from each of my obligations. I use that time to clean the house and soothe Mr. Martini and see the kids for longer than an hour and catch up on schoolwork. Those nights I’m in bed by midnight, but if I go to bed too early I won’t be able to stay up the other nights because I’ll fuck my pattern up, and I drive an hour home from Job 2 so I can’t afford to be sleepy. I never get a day off from work unless I am fairly sick. It doesn’t leave you much room to think about what you are doing, only to attend to the next thing and the next. Planning isn’t in the mix.

When I got pregnant the first time, I was living in a weekly motel. I had a minifridge with no freezer and a microwave. I was on WIC. I ate peanut butter from the jar and frozen burritos because they were 12/$2. Had I had a stove, I couldn’t have made beef burritos that cheaply. And I needed the meat, I was pregnant. I might not have had any prenatal care, but I am intelligent enough to eat protein and iron whilst knocked up.

I know how to cook. I had to take Home Ec to graduate high school. Most people on my level didn’t. Broccoli is intimidating. You have to have a working stove, and pots, and spices, and you’ll have to do the dishes no matter how tired you are or they’ll attract bugs. It is a huge new skill for a lot of people. That’s not great, but it’s true. And if you fuck it up, you could make your family sick. We have learned not to try too hard to be middle-class. It never works out well and always makes you feel worse for having tried and failed yet again. Better not to try. It makes more sense to get food that you know will be palatable and cheap and that keeps well. Junk food is a pleasure that we are allowed to have; why would we give that up? We have very few of them.

The closest Planned Parenthood to me is three hours. That’s a lot of money in gas. Lots of women can’t afford that, and even if you live near one you probably don’t want to be seen coming in and out in a lot of areas. We’re aware that we are not “having kids,” we’re “breeding.” We have kids for much the same reasons that I imagine rich people do. Urge to propagate and all. Nobody likes poor people procreating, but they judge abortion even harder.

Convenience food is just that. And we are not allowed many conveniences. Especially since the Patriot Act passed, it’s hard to get a bank account. But without one, you spend a lot of time figuring out where to cash a check and get money orders to pay bills. Most motels now have a no-credit-card-no-room policy. I wandered around SF for five hours in the rain once with nearly a thousand dollars on me and could not rent a room even if I gave them a $500 cash deposit and surrendered my cell phone to the desk to hold as surety.

Nobody gives enough thought to depression. You have to understand that we know that we will never not feel tired. We will never feel hopeful. We will never get a vacation. Ever. We know that the very act of being poor guarantees that we will never not be poor. It doesn’t give us much reason to improve ourselves. We don’t apply for jobs because we know we can’t afford to look nice enough to hold them. I would make a super legal secretary, but I’ve been turned down more than once because I “don’t fit the image of the firm,” which is a nice way of saying “gtfo, pov.” I am good enough to cook the food, hidden away in the kitchen, but my boss won’t make me a server because I don’t “fit the corporate image.” I am not beautiful. I have missing teeth and skin that looks like it will when you live on B12 and coffee and nicotine and no sleep. Beauty is a thing you get when you can afford it, and that’s how you get the job that you need in order to be beautiful. There isn’t much point trying.

Cooking attracts roaches. Nobody realizes that. I’ve spent a lot of hours impaling roach bodies and leaving them out on toothpick pikes to discourage others from entering. It doesn’t work, but is amusing.

“Free” only exists for rich people. It’s great that there’s a bowl of condoms at my school, but most poor people will never set foot on a college campus. We don’t belong there. There’s a clinic? Great! There’s still a copay. We’re not going. Besides, all they’ll tell you at the clinic is that you need to see a specialist, which seriously? Might as well be located on Mars for how accessible it is. “Low-cost” and “sliding scale” sounds like “money you have to spend” to me, and they can’t actually help you anyway.

I smoke. It’s expensive. It’s also the best option. You see, I am always, always exhausted. It’s a stimulant. When I am too tired to walk one more step, I can smoke and go for another hour. When I am enraged and beaten down and incapable of accomplishing one more thing, I can smoke and I feel a little better, just for a minute. It is the only relaxation I am allowed. It is not a good decision, but it is the only one that I have access to. It is the only thing I have found that keeps me from collapsing or exploding.

I make a lot of poor financial decisions. None of them matter, in the long term. I will never not be poor, so what does it matter if I don’t pay a thing and a half this week instead of just one thing? It’s not like the sacrifice will result in improved circumstances; the thing holding me back isn’t that I blow five bucks at Wendy’s. It’s that now that I have proven that I am a Poor Person that is all that I am or ever will be. It is not worth it to me to live a bleak life devoid of small pleasures so that one day I can make a single large purchase. I will never have large pleasures to hold on to. There’s a certain pull to live what bits of life you can while there’s money in your pocket, because no matter how responsible you are you will be broke in three days anyway. When you never have enough money it ceases to have meaning. I imagine having a lot of it is the same thing.

Poverty is bleak and cuts off your long-term brain. It’s why you see people with four different babydaddies instead of one. You grab a bit of connection wherever you can to survive. You have no idea how strong the pull to feel worthwhile is. It’s more basic than food. You go to these people who make you feel lovely for an hour that one time, and that’s all you get. You’re probably not compatible with them for anything long-term, but right this minute they can make you feel powerful and valuable. It does not matter what will happen in a month. Whatever happens in a month is probably going to be just about as indifferent as whatever happened today or last week. None of it matters. We don’t plan long-term because if we do we’ll just get our hearts broken. It’s best not to hope. You just take what you can get as you spot it.

I am not asking for sympathy. I am just trying to explain, on a human level, how it is that people make what look from the outside like awful decisions. This is what our lives are like, and here are our defense mechanisms, and here is why we think differently. It’s certainly self-defeating, but it’s safer. That’s all. I hope it helps make sense of it.

Additions have been made to the update below to reflect the responses received.

UPDATE: The response to this piece is overwhelming. I have had a lot of people ask to use my work. Please do. Share it with the world if you found value in it. Please link back if you can. If you are teaching, I am happy to discuss this with or clarify for you, and you can freely use this piece in your classes. Please do let me know where you teach. You can reach me on Twitter, @killermartinis. I set up an email at killermartinisbook@ gmail as well.

This piece has gone fully viral. People have been asking me to write, and how they can help. After enough people tried to send me paypal money, I set up a gofundme. Find it here. It promptly went insane. I have raised my typical yearly income as of this update. I have no idea what to say except thank you. I am going to speak with some money people who will make sure that I can’t fuck this up, and I will use it to do good things with.

I’ve also set up a blog, which I hope you will find here.

Understand that I wrote this as an example of the thought process that we struggle with. Most of us are clinically depressed, and we do not get therapy and medication and support. We get told to get over it. And we find ways to cope. I am not saying that people live without hope entirely; that is not human nature. But these are the thoughts that are never too far away, that creep up on us every chance they get, that prey on our better judgement when we are tired and stressed and weakened. We maintain a constant vigil against these thoughts, because we are afraid that if we speak them aloud or even articulate them in our heads they will become unmanageably real.

Thank you for reading. I am glad people find value in it. Because I am getting tired of people not reading this and then commenting anyway, I am making a few things clear: not all of this piece is about me. That is why I said that they were observations. And this piece is not all of me: that is why I said that they were random observations rather than complete ones. If you really have to urge me to abort or keep my knees closed or wonder whether I can fax you my citizenship documents or if I really in fact have been poor because I know multisyllabic words, I would like to ask that you read the comments and see whether anyone has made your point in the particular fashion you intend to. It is not that I mind trolls so much, it’s that they’re getting repetitive and if you have to say nothing I hope you can at least do it in an entertaining fashion.

If, however, you simply are curious about something and actually want to have a conversation, I do not mind repeating myself because those conversations are valuable and not actually repetitive. They tend to be very specific to the asker, and I am happy to shed any light I can. I do not mind honest questions. They are why I wrote this piece.

Thank you all, so much. I don’t know what life will look like next week, and for once that’s a good thing. And I have you to thank.”

This post first appeared on killermartinis.kinja.com

Food for Action

The 2013 Farm Bill is now in conference committee (a meeting between the US House and the US Senate to reconcile differences between the two bills that emerged, one from each chamber). At stake are food stamps.  The House version of the bill has a 20 billion dollar cut.  The Senate bill has a 4 Billion dollar cut.  What does this mean?https://i1.wp.com/www.caritas-waco.org/logo%202%20SNAP_LOGO_eng_acro.JPG

1 out of 6 Americans have inadequate access to food. 21% of households with children have what is now called food insecurity. Over 50 million Americans have difficulty keeping food on the table. 1 in 5 children are at risk for hunger; for Latinos and African American children it is 1 out of every 3. 

Take a look at Jennifer Ensign’s post on her blog Medical Margins.

Could you live on $4.20 a day?  Want to take the challenge and try?  Then will you let the media in your town and your congress people know your experience?  Below is a sample letter and ideas for implementing.  We suggest you send it to a Senator or Congressperson on the committee, challenging them to live on the food stamp allotment until the bill is out of conference.  Then, if you take the challenge, share your experience with the press, blogs, and your congresswomen and men.  Below the sample letter is a list of all on the conference committee. The time to act is now; they have been in conference since 10/30/13.

To:  Representative (or Senator)…
Fr:  your name
Re;  The Farm Bill Conference
November 23, 2013

Dear Representative (or Senator) fill in name

We are writing to you in your role as (_________) state’s conferee on the House-Senate Farm Bill Conference.  As individuals from (_________________), we are gravely concerned by the cuts already taken – and being considered – in food stamp benefits. We assume you want to do
what is best for your constituents, and thus might welcome a first-hand understanding of your actions.

This letter has two parts.
(1)  We are calling on you and your conferees on the Farm Bill to limit your spending on food to the current Food Stamp allotment for an individual for the duration of the Conference Committee.   We know that you may have taken a one-week “food stamp challenge;”  we believe it is particularly appropriate that all of the Conferees “take the challenge” for the duration while deciding whether to restore, or further cut, food stamp benefits. We know this will be difficult, given an average benefit for one person in Washington State is just  $4.20/day.   It is not only not easy, it can be harmful – e.g., to people in physically-demanding jobs, while pregnant or recovering from surgery or illness, or dealing with many of life’s challenges.

(2)  At the same time, we will be limiting our own food spending to that same amount.   To aid your deliberations, we will be reporting regularly on the results to your office, and to others throughout our communities.

Indeed, some those who write you may already rely on SNAP and thus live with the reality of food insecurity.  I hope you also hear their stories. As you and your colleagues debate whether or not to make cuts to a program which is necessary for many to get by, we seek to remind you there are people behind the numbers.  In that spirit, we wish to share our stories with you and will do so.

Those of us who are not limited to a food stamp allotment believe that food security is a right and no person should be denied access to adequate food and proper nutrition.  We wish to stand in solidarity with those who face food insecurity and who will be deeply affected by the actions of you and your colleagues.

Some people will feel they cannot participate (e.g., if it would endanger their health or the health of their families).  In those cases, we will share their stories with you.

We look forward to working with you on this issue.

Sincerely

(your name)

___________________________
Why do this:  We believe it would help committee members in the understanding of food insecurity if they were to have even a limited experience in what it is like to have no more than $4.20/person/day (the average benefit in WA) to spend for food.

And, since we realize it may be difficult for a sitting member of Congress to do this, we are asking others to also do this – for as long as the Farm Bill Conference meets.  By signing this letter, you will be agreeing to do the following:

1)      Confine your food consumption to what you can purchase on $4.20/person/day.
2)      Send regular reports to your Senator’s or Representative’s office, telling her how it feels, and whether it is easy or hard.  E.g., whether it affects energy levels; whether you can afford healthful food; how your attitudes are affected.
3)      Send regular reports to others:  social media, traditional media, colleagues, neighbors, family, friends.
4)       If you believe it would be harmful to you or your family to limit food spending so drastically (e.g., if you are diabetic or pregnant or recovering from an illness or surgery), we ask that you send that information to the Representative’s office.   (Food stamp recipients are not given higher amounts if they hold physically demanding jobs, or have special health conditions.)

If this sounds like something you are willing to do (or at least try), please copy this letter, sign it, and send it to the appropriate person for your state or to the chair of the committee.  And then, begin the pledge.
______________________________________

Who is on the committee:

The Senate conferees include:

Democrats:

  • Sen. Debbie Stabenow (D-MI), Chairwoman of the Senate Agriculture Committee
  • Sen. Patrick Leahy (D-VT)
  • Sen. Tom Harkin (D-IA)
  • Sen. Max Baucus (D-MT)
  • Sen. Sherrod Brown (D-OH)
  • Sen. Amy Klobuchar (D-MN)
  • Sen. Michael Bennet (D-CO)

Republicans:

  • Sen. Thad Cochran (R-MS), Ranking Member of the Senate Agriculture Committee
  • Sen. Pat Roberts (R-KS)
  • Sen. Saxby Chambliss (R-GA)
  • Sen. John Boozman (R-AR)
  • Sen. John Hoeven (R-ND)

The House conferees include:

Republicans:

House Committee on Agriculture conferees:

  • Rep. Frank D. Lucas (R-OK), Chairman of the House Agriculture Committee
  • Rep. Steve King (R-IA)
  • Rep. Randy Neugebauer (R-TX)
  • Rep. Mike Rogers (R-AL)
  • Rep. K. Michael Conaway (R-TX)
  • Rep. Glenn ‘GT’ Thompson (R-PA)
  • Rep. Austin Scott (R-GA)
  • Rep. Rick Crawford (R-AR)
  • Rep. Martha Roby (R-AL)
  • Rep. Kristi Noem (R-SD)
  • Rep. Jeff Denham (R-CA)
  • Rep. Rodney Davis (R-IL)

Leadership conferee:

  • Rep. Steve Southerland (R-FL)

House Foreign Affairs Committee conferees:

  • Rep. Ed Royce (R-CA), Chairman
  • Rep. Tom Marino (R-PA)

House Ways & Means Committee conferees:

  • Rep. Dave Camp (R-MI), Chairman
  • Rep. Sam Johnson (R-TX)

Democrats:

House Committee on Agriculture conferees:

  • Rep. Collin Peterson (D-MN), Ranking Member of House Agriculture Committee
  • Rep. Mike McIntyre (D-NC)
  • Rep. Jim Costa (D-CA)
  • Rep. Tim Walz (D-MN)
  • Rep. Kurt Schrader (D-OR)
  • Rep. Jim McGovern (D-MA)
  • Rep. Suzan DelBene (D-WA)
  • Rep. Gloria Negrete McLeod (D-CA)
  • Rep. Filemon Vela (D-TX)

On Keep On Keepin’ On

While swimming this morning, I was thinking about these recent weeks.  They mark the anniversaries I mentioned earlier in the week and my father died this week 17 years ago.  My brother-in-law died last month and a friend (the dad, grandpa, father-in-law, and husband to close friends) died this month. Swimming is a good place to be with myself, quiet and undistracted. From reflecting on the lives of those on my mind, I moved to questions about how we live.  How is it that we keep on keeping on? that we get up and keep going? I alluded to it in yesterday’s post.  It is more central on my mind today.

Two strangers suffered a similar loss.  https://i2.wp.com/www.griefland.com/wp-content/uploads/2012/09/GrieflandBigSur1.jpgArmen’s son Alex and a few years later Nancy’s daughter Rachel died.  A mutual friend introduced them and Armen became a guide and mentor with Nancy after Rachel’s death. As they wrote and exchanged thoughts and feelings, each was drawn deeper into this land we call grief.  They became close friends and  their writings became a book I recommend you buy: Griefland: An Intimate Portrait of Love, Loss and Unlikely Friendship. 

Nancy and I had corresponded in a web-based support group over the few years before Rachel’s death. In 2009, I showed her a picture of a doll I made in a workshop based on the work of Marita Dingus.

my dragonfly

I did not have knowledge of some cultures’ beliefs about dragonflies when I put one on my doll, but I liked it even more when I learned the symbolism. Nancy asked me to make a doll for Armen as a thank you for her presence in Nancy’s life.  She mentioned she would like one too.  They each sent me a few items that were meaningful artifacts in their families. Nancy wanted each to have a dragonfly.

When the dolls were complete, I explained them to both women:

Armen, I have never met you.  Your friend Nancy describes you as passionate, a gypsy at heart, deep, powerful.  She asked me to make you a dragonfly doll and yours is my second in a series of three.  Thank you for shepherding and sharing this journey with Nancy.  Having held the artifacts you gave to Nancy, there are ways I feel I know you.  When I look at the photo of earlier days, I see the connection among the four of you. Your traveling cross and your passport express other components of your spirit.

I imagined a wild gypsy for you at first and the picture that I had df5in my mind was actually the doll that I made.  When I look at your veiled dancer now however, she looks more subtle and gentle. She is the gypsy, the carrier or holder of your story, as much as another could represent it.  She is clothed in layers that can swirl or hide.  She is complex.  If she is a carefree gypsy, she is also a tender soul who can hold much in her softness for those whom she loves.  Your dragonfly is made from Swarovski crystals.  Crystals should refract light to show a rainbow: many colors, many symbols in many cultures.  dragonfly1Your doll would embrace the variety, which for me mean life and hope and beauty.  When you look at the inside of the cape, it becomes obvious that the story is yours.  The cape is held down, weighted, grounded by the two beads that are bone, raising your friend’s question of where do the bones go?

The lizard on your shoulder is for Alex, who loved lizards. The mother and two children: Danielle and her two and of course, you and your two, all linked to each other.  The ring is for your many years with your husband. The weights at the edge of the cape are also for your connection to writing, to Setrakian and Sorayan.  The key, from Rachel, is what keys are, both the means to open and move through, and also the reminder that we do not have to do these walks alone.  You are the living demonstration of this in your friendship with Nancy.

The heart is within the key; no key functions outside of our hearts. There are two word notations, “peace” and “&”.  You live in words; may they bring you peace. The “&” is an inclusive word.  Your cross is of course for your travels, and for my wish that many jeweled adventures lay ahead.  For this walk, you need boots; Nancy felt shoes were a key symbol for you both.  That they are boots is my touch: they do work, they touch dirt, they kick when necessary.  There is a bit of imaginary cowgirl in me.  We also share the material in your doll’s veil; my doll has the same fabric as a cape.  Both yours and Nancy’s dolls have the same fabric in their capes, reversed.

Nancy, your doll is the Lady in Red.  df2This was your stretch, and for us, always remembering to stretch will help keep us sane.  That we have never met is really rather amazing when I think about our connection.  Making these dolls was a treat for me. Because of your request, I could know you better.  Your dragonfly is like an amulet, a shield, beaded with the colors of earth and fire, the counterpoints for this insect that lives between air and water.  It is fastened with the button from your youth, because those years are the template from which you have grown.  It emerges from your paisley fabric, linking you further to your past.  It is fringed to represent a talis for whatever form your spirituality takes.

df7As with Armen’s doll, the inside of the cape is where your family tree lives, showing that the doll is the keeper of your story.  I picked a quote from Saroyan’s book Where the Bones Go, because really, this project came to be in large part because of Rachel bringing you to Armen.

Your dragonfly doll is regal and proud and unbound.  She strikes me as a protector who can stand tall, feel everything, living in her domain, not constrained by tradition or dictum. df4 Jessica’s cameo is on your skirt.  Do you and Jessica know that cameos are seen as a vow of love, sometimes given to travelers? Josh’s Aztec cross can be another talisman, protecting you from evil.  Rachel’s Mama Bear icon became part of Rachel’s key, because how she saw you and your heart will be part of your discovery as you use your key.  The beads then encircle you and thread connects the three siblings to your heart.  The heart on your doll is one from a pair of earrings; the other one is on my doll,  as our hearts are linked.  And of course, there are two keys; you have one and Armen has one.  Your word is grace.  You also live in words and your journey is rich with grace. The “&” is inclusive; do you remember in seminar hearing how “but” negates and “and” expands?  You told me shoes were very important.  The boots are my touch.  Boots do work, they walk through shit, and they kick when necessary.

Other Side of the Bed

Luckily I have not spent much time truly on the other side of the bed as a patient. And those moments have been brief, though worth being snapshot vignettes in this post.

There was the time at 18 years of age that I had surgery on my tail bone. When I went to the post operative exam, the surgeon had three medical students shadowing him that day (males all of them, not much older than I). The nurse put me in a room, noting I had sweat pants and a t shirt on and would not need to change to a gown.  When the surgeon and his students entered, there was a brief exchange:

“How’re you doing?”

“I’m fine.  Can I go back to work?”

“”Well, let’s see, bottoms up!” he exclaimed as he tipped me into leaning over the exam table as he pulled down my sweat pants, exposing my surgical incision (and buttocks) to the students. To this day I wonder. Was he doing a bravado thing for the students? Was it an attempt at funny, with me included and not as the object?

A few years later, when I was in grad school, I was hospitalized at UC Berkeley with a pneumonia. I was 21. Thought to be a bug called mycoplasma, the treatment those days was tetracycline.  That stay was notable for several things.  Because the hospital was right on campus, friends could visit at all hours- and bring me things I needed, like cigarettes.  In those days the only reason I could not smoke in the room was because I was on oxygen.  Can you believe it, pneumonia and no policy against smoking?  You could often find me leaning out the window with my oxygen off, having my smoke.

While there, my face, arms, chest and back all broke out in the most amazing case of an acne like rash.  It hurt, it burned, and it itched.  None of the doctors seemed concerned, though they would say “Hmmm, I wonder”  or “Hmmm, have you been sweating a lot when your fever breaks?” I was  a relatively compliant patient (other than the smoking), sitting there, taking what medicines they gave, asking very few questions. There were also had medical students on a “student health” rotation from UC San Francisco.  One day, in came the attending doctor, white coat pocket’s full of papers and gadgets. With him were 5 young men.  Yes men…few women yet.  They had on short white coats, with pockets stuffed more that those of the attending doctor.  By the time of this incident I was very close to the same age as them.  Most medical students went straight from college into med school.

They circled the bed with the attending at the center looking at me from the foot of the bed; the students, two or three to each side, were at his side with “What new exciting thing will I learn” expressions on their eager faces.  I, the specimen, was asked to raise the head of the bed and sit up.  This was not hard (I mean, really, I had just been at the window, hanging half way out to satisfy my nicotine urge).  I complied.  While they did not have beards and those big white collars, I could not help but think of Rembrandt’s The Anatomy Lesson of Dr. Nicolaes Tulp.    I almost laughed out loud.  If I had any inkling I would be heading for medicine, I might have been more understanding, but no, I was going to be a social policies person, community advocate extraordinaire. So these fellows amused me with their devotion to, well I was not sure what.

As the attending spoke about my case with words that were at that time a foreign language, he reached across the bed and with aplomb, he pulled down my gown, dropping it at my waist. There I was, sitting, at age 21, bare breasted with this horrific acne like rash, facing these eager students and their teacher as he lectured about my skin condition, tying it to the fevers and sweats I had in the previous days. This monologue was probably only a couple of minutes. It felt like an eternity.  I sat there dutifully.

We teach differently and hopefully our students and residents know to attend to patient comfort.Knee Device_2

This is me, 2009, fractured tibial plateau, post repair by a surgeon who held my hand while they put me under anesthesia.  I cannot tell you how much that meant to me.

Knowing that there is so little I can know about another’s experience is one thing; life reinforcing that knowledge hits it home.

All the time, I start patients on lisinopril and other medications that are called ACE Inhibitors.  Some significant proportion of them come in saying, “Change it. The cough is unbearable.”  When they say “cough,” I am all over it.  I change their medication to something else.  I ask questions about the cough to convince the patient and me that the cough is not from an illness rather than a side effect of the medication.  I ask about fever, cold symptoms, smoking, sputum production, timing of the cough, things that make it better and worse.  Inevitably the patient has stopped the medication and the cough has vanished, poof, just vanished. That’s enough for me; I suggest an alternative.

This past month my doctor and I have been discussing my blood pressure.  From the 14 hours I could tolerate the 24 hour blood pressure monitor, it was clear.

OK first, to any of my patients who I have subjected to a 24 hour blood pressure monitor, my heartfelt apologies.  I thought it was a nifty high tech device that silently and unobtrusively recorded blood pressures as the day went by. NOT.  It is a clumsy cuff with a big fanny pack to be worn.  I was more or less ok with that.  BUT it beeped every time it was going to take a blood pressure, leaving me explaining it to co-workers and then awakening every 20 minutes during the night, to finally throw it across the room at 2AM. I thought I would have a hypertensive crisis from wearing the thing.

My results were clear:  to manage my blood pressure all I needed to do was not work and spend a lot of time in bed. I like that idea, but I could picture the bills mounting, so opted for a very tiny, almost homeopathic dose of lisinopril, 2.5 mg for any of you who might be in the guild.

Sweet, I thought. Days 1 and two went fine and I even remembered to take the pill.  I was getting over a cold and was not surprised by the occasional cough.  (For those who do not know me, I do not any longer hang out windows smoking; I quit 28.5 years ago, but am sure, when I have a cold, that my lungs remind me of those days.) Then came day three.  At about 1030 that morning I felt a tickle in my throat.  No big deal.  A tickle is a tickle.  Thing to do: clear my throat.  I coughed once and went into this several minute spasm that went from gasping for air to wanting to reach down and tear the tickle from my throat to knowing that some more coughing would not solve it. With a drink of water, it settled down.  At 2PM there was a repeat, and again at 5 and 9PM.  The next three days were no different.  NOTHING prevented them; this was like nothing I had ever experienced, even in my smoker’s cough or whooping cough days.

I stopped taking the lisinopril and still need to tell my doctor.  That very weird cough is gone.  The real test would be to take it again and see if it has come back.  I actually have suggested that to patients with whatever med they are not tolerating, to prove to them (and me) that it really was a side effect to the medication.  I did that with tetracyline.  Guess what: same rash, I am allergic to it.  With this lisinopril, I am not sure I want to take my own recommendation.

What I cannot believe is that I have never really understood from what patients described to me that this cough is really beyond annoying.  There is no way I could see patients, teach or even concentrate with it!

The last of recent lessons has to do with cataracts.  I have probably had over a thousand patients get cataract surgery, almost all very very happy with the results.  NOT ONE has talked about the 5 weeks of 4 times a day drops (four different ones, spaced 5 minutes a piece) Have you ever tried to do something and know that in five minutes you have to do drop #2 and five minutes after that drop #3 and after five minutes later drop #4…only to repeat 4 times that day? That requires a lot of focus.

And not one person talked about the challenge of how do you see when you cannot get your new prescription for six weeks?  My surgery on my right eye was a piece of cake.  For the first time since age 13 I can see 20/25 without glasses.  Cool. Here’s the catch!  I cannot read anything out of it.  If I put on my glasses, my left eye is happy and can see mid, far, and near.  For my right eye nothing is right. I have to wait six weeks to get that script. If I have my glasses off, my left eye is not good at near, mid, or far distances, but my right eye can see far.  How did I not know this from all our patients?  I am fine.  My brain has adjusted and luckily I have not had a complex tear to repair for a woman having a baby or other need for both eyes to work together.  Tomorrow I get a pair of glasses that will be right for both eyes until the left eye is done and then I will have six more weeks.

To my patients:  I now know better how to ask about your experience.  And I celebrate your resilience and how your carry on and adjust, regardless!

Backslide

Parent is a noun, not a verb.  In late twentieth and the current centuries it has been relegated to verb status by many who speak to the art of being a parent, as in “to parent.” Leaving the semantic argument aside, there are developmental challenges along the way of being a parent.  How we spend time with, coach, and nurture a two year old is different than for a five year old, twelve year old, twenty-five year old.

One quote I found: “Parenting isn’t a noun but a verb–an ongoing process instead of an accomplishment.  And that no matter how many years you put into the job, the learning curve is, well, fairly flat.” Jodi Picoult House Rules

When our children are little we are in active verb mode. We nurture our kids not just by our presence; we set the standards, the expectations, the family values.  We guide, we play with, we love our children.  We do their laundry, buy, cook and serve their food, coach their teams and attend their games, help with homework, be sure the homework is done, take them and their friends places, teach them to ride bikes and practice reading and math, celebrate their accomplishments, wipe tears from their eyes, and tuck them in at night with stories and hugs.

Then they start to shun our verb like presence in their lives, brushing it off like they brush off lint on their dark sweaters with the apparently emerging demonstration that they care about how they look (even if that look isn’t one we particularly like).  Well, actually, it’s all the better from their perspective if it’s a look we won’t particularly like. The practice we got with our two and four year olds, hearing “no, I do it myself” should serve us well when not a decade later their cry is undeniable.

I don’t know about you, but for me I was in boot camp training to transition from verb to noun.

“Mom, why are you bugging me about my work?”  “Mom, are you going to come to college and make sure I get enough sleep and eat the right food?”  These were all good points, but in my mind I had the answers ready, even as I tried, often unsuccessfully,  to avoid sharing them: “I am still paying the bills.”  “Maybe you don’t know how important this is.” “You think you are older than you are or act.” My thoughts did not dampen the push back, nor should it have.

I admit to jealousy that  some parents have an easier time with this transition than I did. A concept and an image both helped me.  The image is of those bobble head dolls that sit on dashboards.  My job: imitate them as much as I could.  The concept:  stop parenting as a verb and embrace parenting as a noun.

My sons are adults now.  Unless I am asked or it involves my resources, there really is no need to be a verb.  Sometimes it is hard.

The other night I was giving my son a ride somewhere. All day I had been worrying about something that (1) was not really my business and (2) was really not worth worry and (3) did I mention it was not my business? So I brought it up in the car and the words floated, no rushed from my mouth in a torrent I couldn’t stop soon enough to prevent them reaching my son’s ears. As the sound waves were traveling, I realized I had just taken a giant step backward. Verb, giving advice that was not asked for or needed. And my son’s radar is finely tuned for sniffing out parental back sliding. He called me out, suggested (with amazing tact, given the visual darts coming my way) alternative wording. And I apologized.

Some kids are more tolerant of their parents and some maybe even enjoy frequent meddling (verb) by their parents.  I guess I can thank my kids for the hard core training they give me.  Wait, that’s a verb!  Can I look forward to noun from them some day?

The vote

I started three different posts tonight and cannot decide on the order.  Which first?  Which second?  Which third or not at all.

This blog has 150 “followers.”  Now is your chance to weigh in.  Here are the choices for the next few.  What do you want to hear?

1. Parenting as a noun (vs verb), a back slide (car ride Wed night)

2. life on the other side, eg in the bed as patient

3. Counting on the Latino vote

4. Getting quiet with yourself

Tomorrow will be one of those. If you weigh in, that will decide which.

Awakening in the USA

Some ask, what do all my posts,  health policy mixed with family, memoir,  have to do with moments?  We live in them!  Moments have content.  These current times will be remembered when most national elected officials from both parties share some of history’s lowest approval ratings. Moments, where we live, how conscious and intentional we are, how we use them, are really all we have.  Relationships happen within them.  Relationships end within them.  Both lead to change and either forward or backward movement. I am a generalist and have many domains in play at any given moment.  There are many who can attest that I cannot be narrowed: my parents and grandparents, my college advisor, my grad school advisor, the specialists who wanted me to pick their field during med school, and on and on and on.  For me the threads connect. My hope is that readers will see what the moments mean when I write (and maybe want to read the book if someone takes it and it moves from manuscript to book, Life Lessons, What Our Patients Teach Us)

Today and this week  the press is reminding us of 1863 and 1963.  The events they remember were touchstones in my life. 1863 was having its hundredth anniversary in 1963 when many moments were pivotal for me.

There I was, a recent transplant (August 1962) from California to Virginia, sophomore in high school.  Me: a pudgy teen with acne and a decent brain in the throes of who am I, though I did not know it.  There were existential crises like when I found out my friends would think I was a snob when I did not recognize them because I was too vain to wear my new glasses.  I had my first real boyfriend, a congressional page.

My world turned on the events of 1963 in ways that shaped me.  I am sure there were the foundations laid by other circumstances in our lives, like having an older brother whose brilliance I accepted and being a young girl in the 60s whose guidance counselor told me, because I was female, that my aspirations should aim at state teachers college “and not higher” or my mothers flight of fury to take on this woman for trying to limit my dreams.  I can write more about all of that and my development in those contexts, but tonight is about 1963.

To get there we need to fast forward to 1964.  It was the World’s Fair in New York.  My brother was off to college. My parents, my two younger sisters, and I boarded a bus to NY to meet my mother’s parents, see New York, and do the World’s Fair. On the bus, I was working on a talk for my “expository speech” in debate club.  Titled “Building Bridges,” I called for racial equality and inclusivity. I showed it to my mother.  She actually asked if I had written it or copied it from somewhere.  I was taken aback, furious, and with a typical 15 year old posture, I cried, “How could you even think that?” silencing those in the seats nearby. This was the most original piece I had ever written. How dare she? Did she know me so little that she could not understand from where this came?  She imagined I plagiarized it?  Really? It came from her upbringing of me…and 1963.  She raised us with  “all are equal; we are the same.” The 1963 opened my eyes.

1963

January of 1963 was the 100 anniversary of the Emancipation Proclamation (1/1/1863).  We were studying the civil war in class.  It was on the news.

I was that teen with my first boy friend, that Capitol Hill Page whose dad was a congressman from somewhere.  We would go to DC for dinner, me with my fake id, have steaks and wine and cigarettes.  There was the luau at LB Johnson’s house, then Vice President, because Lucy Bird was also dating a Page. That made me a grown-up, right?

June of 1963: John F. Kennedy issued a proclamation ordering the Governor Wallace of Alabama to comply with the 1954(!) law of school desegregation. When Wallace blocked the entrance to the University, JFK brought in the National Guard and Wallace stepped aside.

Dulles Airport had been built and sometimes my friends and I would drive out there, all dressed up, just to be in that space, new with driver’s licenses, acting adult.

August of 1963, with the 100 year anniversary of the Emancipation Proclamation (1/1/1863) and of the Gettysburg Address (11/19/1863), Martin Luther King and 200,000 others marched on Washington.

August of 1963, my brother was leaving for college on the left coast and I was convincing my parents that I could have his room and paint it pink, (which by the way was on a different level, allowing me to both sneak out and smoke cigarettes with the window open and, I thought, be undetected.)

Also in 1963 the Beatles hit the US.  They were not on Ed Sullivan until 1964, but as my musically talented brother validated my more visceral very positive response and said:  “this is very talented and complex music.”

November of 1963: I was sitting in a class when the announcement came.  “The President has been shot.” JFK was dead, just weeks before he could have hoped to have the civil rights bill passed, or would it have been?  How did that moment bring history forward with a big tradeoff?

Regardless of that answer, for me it was a year of awakening to a larger world, to the imperfect union we have, to the work we still face, as Lincoln noted in the Gettysburg address. In this week and year 2013, the 150th anniversary of the Emancipation Proclamation and the Gettysburg Address and the 50th anniversary of JFK’s death, I sit here knowing what the cumulative moments of 1963 did to grow me and they feed me still.  And you?

Students’ eye towards the future

What we know from many studies is that most medical students enter medical school with a stated altruism, many wanting to work for social justice, to serve the underserved, and in primary care careers. And then the attrition starts, moment by moment, and it is down hill from there.

By graduation, the students going into rural and underserved careers drop the majority of those initially interested.

Think of it as a pipeline.  It has a diameter to hold all of the students going who, at entry, want these careers.  At graduation there is a much smaller trickle of those going into primary care and of those, a few drops choose rural or urban underserved practices. I won’t bore you with all that we don’t know about how to impact this; suffice it to say that it matters to some of us medical educators and health policy nuts and so we keep trying.  There are of course the extrinsic factors (like “specialty bashing” or remuneration differentials that select procedures over time spent with a patient in life style conversations) and we don’t control those. And we keep trying to impact what we can.

Tonight, maybe seventy-five people were in the room, ranging from deans to first year medical students with faculty, staff, and second, third, and fourth year students in between.  Two thirds were students. The states of Washington, Wyoming, Alaska, Montana, and Idaho (WWAMI) were represented with both deans, students, and staff.  A few “out of states” students were there as well, at least one from California.

Some of us have spent a good portion of our work lives developing and feeding that pipeline I mentioned above and then nurturing the students in it to continue their commitment to careers caring for rural and urban underserved communities.  The WWAMI states have 28% of the US land mass and only 3.5% of the population, of which 35% are rural residents.  And what we might call rural in Washington is considered urban in Montana, Wyoming, Alaska.

The University of Washington Medical School serves those five states, through the WWAMI Program.  Two recent initiatives to nurture that pipeline are the Underserved Pathway  (UP) and the TRUST Program. The UP is a program any student can join, providing structure to students for planning their curriculum, mentorship, and on-line educational modules.  The TRUST program admits a cohort of students to be scholars (now 10 a year in Montana, 5 in Eastern Washington, 5 in Western Washington, 5 in Idaho, and soon some from Alaska and Wyoming) from an applicant pool who have both the credentials for admission to the school of medicine and those that support a stated desire to have a career in rural or underserved health care. TRUST scholars have a longitudinal relationship with one rural community for the entire four years of medical school. They spend two weeks in their community before first year classes even begin, visit during the years one and two, a month in the summer after first year, and 4-7 months in third year, returning for elective work in fourth year.  All complete the UP.

The regional deans from Alaska, Wyoming, Montana, Idaho, Eastern Washington and Western Washington are in town this week for a variety of meetings purposely packed into one week.  As part of this visit, they like to spend time with the students from their state and we (TRUST and UP) want to pull them all together for an educational session.  That was tonight’s gathering.

After a Kaiser Foundation video on the ACA and a clicker response quiz, small groups formed to discuss hopes, fears, impacts, and real stories these students have already witnessed.  Each state dean gave an overview and update of what is happening in their state.  While Washington is the only of the five with medicaid expansion, several are on board with exchanges and several are having ongoing medicaid expansion discussions with strong support from groups like physicians, hospitals, business, labor, and others.

In the wrap up it was clear that these medical students see their lives as having a social context and contract to improve health and  access.

They worry about their capacity and acknowledge we need new models of care.

They know that whether they are activists or not, they are being political, which opens a discussion of how to be active effectively.

Many believe that universal single payer insurance will be the only thing that will work.

They are realistic that change is hard and will be incremental.

I worried that this would feel like a downer.  From the energy in the room and the comments after, I think it was energizing.  Lesson for me:  hard topics with no easy solutions are less so with the support of others.

And me:  I am deeply touched by the realism, passion, energy, and clarity of these students.  They seem up for the task.  And there are more of them than were in my generation. If our programs keep their fire kindled, I will feel success.  If one of each of us elders fosters two or more who take on the mission, I will feel success.  Tonight I am grateful to be part of the effort and to our students who keep me with some modicum of focus and youth.

The US Health Care System

From Aaron Carroll from JAMA

“From JAMA. I reformatted the abstract, and broke it up into paragraphs to make it easier to read:

Health care in the United States includes a vast array of complex interrelationships among those who receive, provide, and finance care. In this article, publicly available data were used to identify trends in health care, principally from 1980 to 2011, in the source and use of funds (“economic anatomy”), the people receiving and organizations providing care, and the resulting value created and health outcomes.

In 2011, US health care employed 15.7% of the workforce, with expenditures of $2.7 trillion, doubling since 1980 as a percentage of US gross domestic product (GDP) to 17.9%. Yearly growth has decreased since 1970, especially since 2002, but, at 3% per year, exceeds any other industry and GDP overall.

Government funding increased from 31.1% in 1980 to 42.3% in 2011. Despite the increases in resources devoted to health care, multiple health metrics, including life expectancy at birth and survival with many diseases, shows the United States trailing peer nations. The findings from this analysis contradict several common assumptions. Since 2000,

  1. price (especially of hospital charges [+4.2%/y], professional services [3.6%/y], drugs and devices [+4.0%/y], and administrative costs [+5.6%/y]), not demand for services or aging of the population, produced 91% of cost increases;
  2. personal out-of-pocket spending on insurance premiums and co-payments have declined from 23% to 11%; and
  3. chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.

Three factors have produced the most change:

  1. consolidation, with fewer general hospitals and more single-specialty hospitals and physician groups, producing financial concentration in health systems, insurers, pharmacies, and benefit managers;
  2. information technology, in which investment has occurred but value is elusive; and
  3. the patient as consumer, whereby influence is sought outside traditional channels, using social media, informal networks, new public sources of information, and self-management software.

These forces create tension among patient aims for choice, personal care, and attention; physician aims for professionalism and autonomy; and public and private payer aims for aggregate economic value across large populations. Measurements of cost and outcome (applied to groups) are supplanting individuals’ preferences. Clinicians increasingly are expected to substitute social and economic goals for the needs of a single patient. These contradictory forces are difficult to reconcile, creating risk of growing instability and political tensions. A national conversation, guided by the best data and information, aimed at explicit understanding of choices, tradeoffs, and expectations, using broader definitions of health and value, is needed.

My frustration? That anyone treats any of this as news. At some point we need to stop diagnosing the problem and start doing something about it.”

And then factor in the uninsured, the health disparities, and social determinants.  Are we having the wrong conversations? Are they even conversations?

Halfway photo break

trees sculp garden

It is November 16th, past the midway point.  As a thank you for sticking this out I am going to simply post some pictures from around here in the Northwest.  And I am going to sit back, pretend it is summer, finish being on call, and tomorrow read the New York Times, wishing I were sitting in a raft on Lake Sutherland. MtR arboretumThe photos above are, starting from the top, woods on the Olympic Peninsula, Space Needle seen through Cloud Cover by Teresita Hernandez (Olympic Sculpture Garden, Seattle), Mt Rainier sunrise from Lake Washington (taken by my son), The Arboretum in fall.

PICT1506_2

Code status continued

Sharon M. posted a comment that I had informed Eva’s son and it was ultimately up to him.  True that he was key in this process.  He was the voice for Eva. If he chose, is everyone who cares for Eva bound by his decision?  What if the harm of resuscitation outweighed the benefit? What if it is a different story and the patient was in an accident and is in a coma.  The doctors think aggressive treatment can save her, return her to a functional life with quality (and who gets to decide that anyway)?  The surrogate says, no, do not intubate.  Whose decision should carry the weight?  How would YOU decide?

What could I do?  What should I do with Eva’s case?

We were taught certain key values in ethics classes:

Autonomy: Every person has the right to self determination.  This would include the surrogate decision maker, like Eva’s son, acting on her behalf.

Beneficence: We are to act for the good of the patient

Non-Maleficence: “Primum no nocere”  or First, do no harm

Justice: This calls for the fair distribution of scarce resources and fairness and equity in delivery of care (not a hallmark of the US Healthcare System)

Respect:  Every person should be treated with dignity

Honesty and clarity: Informed consent comes from this concept.

There is a four box methodology for sorting through all this, which is copied from here 

MEDICAL CONSIDERATIONS
The Principles of Beneficence and Nonmaleficence

  1. What is the patient’s medical problem? Is the problem acute? Chronic? Critical? Reversible? Emergent? Terminal?
  2. What are the goals of treatment?
  3. In what circumstances are medical treatments not indicated?
  4. What are the probabilities of success of various treatment options?
  5. In sum, how can this patient be benefited by medical and nursing care, and how can harm be avoided?
PATIENT PREFERENCES
The Principle of Respect for Autonomy

  1. Has the patient been informed of benefits and risks, understood this information, and given consent?
  2. Is the patient mentally capable and legally competent, and is there evidence of incapacity?
  3. If mentally capable, what preferences about treatment is the patient stating?
  4. If incapacitated, has the patient expressed prior preferences?
  5. Who is the appropriate surrogate to make decisions for the incapacitated patient?
  6. Is the patient unwilling or unable to cooperate with medical treatment? If so, why?
QUALITY OF LIFE
The Principles of beneficence and Nonmaleficence and Respect for Autonomy

  1. What are the prospects, with or without treatment, for a return to normal life, and what physical, mental, and social deficits might the patient experience even if treatment succeeds?
  2. On what grounds can anyone judge that some quality of life would be undesirable for a patient who cannot make or express such a judgment?
  3. Are there biases that might prejudice the provider’s evaluation of the patient’s quality of life?
  4. What ethical issues arise concerning improving or enhancing a patient’s quality of life?
  5. Do quality-of-life assessments raise any questions regarding changes in treatment plans, such as forgoing life-sustaining treatment?
  6. What are plans and rationale to forgo life-sustaining treatment?
  7. What is the legal and ethical status of suicide?
CONTEXTUAL FEATURES
The Principles of Justice and Fairness

  1. Are there professional, interprofessional, or business interests that might create conflicts of interest in the clinical treatment of patients?
  2. Are there parties other than clinicians and patients, such as family members, who have an interest in clinical decisions?
  3. What are the limits imposed on patient confidentiality by the legitimate interests of third parties?
  4. Are there financial factors that create conflicts of interest in clinical decisions?
  5. Are there problems of allocation of scarce health resources that might affect clinical decisions?
  6. Are there religious issues that might affect clinical decisions?
  7. What are the legal issues that might affect clinical decisions?
  8. Are there considerations of clinical research and education that might affect clinical decisions?
  9. Are there issues of public health and safety that affect clinical decisions?
  10. Are there conflicts of interest within institutions or organizations (e.g. hospitals) that may affect clinical decisions and patient welfare?

Back when I first was a student and resident, we involved patients and families in discussions of code status.  Usually we agreed.  If we did not, we would continue to talk with patients and families and tell them if we thought the person was a “no code.”  This process became more formalized in the places I practiced, but there still were still times when the patients and their families did not agree with us, the doctors.  We talked and inevitably we agreed, always, in my practice, erring on the side of letting someone stay in the full resuscitation category.

Never before Eva had I reached this block.  Take a look at the four boxes.  What do you need to know in Eva’s case?  How would you approach this?  If it is totally Eva’s son’s right to decide, do I have an obligation to perform CPR and advanced life support measures, even if they go against what I think I took as a physician’s oath?

In all ethical crises, two or more values come into conflict.  In this one it is where autonomy comes into conflict with beneficence/non-maleficence. Can you weigh in?

Code Status

Curled up like a little child taking a nap, she seemed even smaller than her ninety pounds.  She was clean, her hair in a tidy braid, her skin soft and moist, and she had no signs of skin breakdown or bed sores, the absence of which told us that her son clearly took time bathing her, using moisturizers, and frequently turning her to prevent prolonged pressure on any one area.  Sometimes she would open her eyes but they did not register any recognition — even of her son, even when he called her name, Eva.  Mostly now at 88 years of age, she just lay there all curled up, no longer able to uncurl, eyes closed.  https://i2.wp.com/farm5.staticflickr.com/4080/4823054554_b0ebf60d20.jpg

 We could get no response from Eva unless she experienced pain.  Turning her would sometimes bring a cry and trying to stretch her contracted limbs always brought one.  She wore a diaper that was changed regularly by her son at home and by our staff when she was in the hospital.  A few years earlier she would wake up and could be fed.  That ability had slowly vanished and her son elected to having a feeding tube placed as her sole way to receive nutrition.  He wanted to keep his mother alive as long as he could.  Her diagnosis?  Advanced and advancing dementia, a combination of Alzheimer’s and small strokes.

Eva’s caregiver was her son, a man in his fifties who immigrated with her, leaving his position in their home country. His only income was the state support as his mother’s caregiver.  Every few months Eva would develop some malady—a cough, a urine infection, or mysterious fevers. We would hospitalize her, noting that during her stays, her son rarely visited. This limited our ability to form a relationship, a partnership with this important person in Eva’s life, but we believed everyone needs a break. For that reason, his absence did not bother our interns and residents or me and the other faculty doctors. Usually after several days, we would pronounce Eva well enough for discharge and he would come and get her or be at home to receive her when the cabulance brought her home.

When Eva’s condition progressed to the unresponsive curled up, unable to uncurl or respond being, we initiated a conversation with her son who had durable power of attorney for health matters. If her heart stopped, what would he want for her? What would she want?  He was adamant that he wanted full resuscitation.  We talked with him about how she was in the terminal stages of Alzheimer’s and asked him about the quality of her life.  He remained firm:  resuscitate her if she needed it.

There often are family fears around this discussion of what we call the “code status” (the do or do not resuscitate).  Will we give antibiotics if needed?  Are we stopping all treatment?  Will we be less attentive to someone who is a “DNR” (do not resuscitate) than to someone who is “full code” or do resuscitate? Where is the line drawn?  We emphasized that our care would be ongoing and we would aggressively treat the reason she was in the hospital. The question was a what if.  What if her heart stopped?  What if she needed to be intubated?  He did not change his mind. He wanted her to be a “full code.”

Medical futility is a situation when intervening is not likely to have a good outcome or to produce good quality for the person.  There are easy examples: should a person with advanced lung cancer, with spread to other organs, be given an organ transplant?  When we think about the rususcitate or not question, age and other medical conditions influence the predicatbility of success. For Eva, if her heart stopped, indicating she was basically trying to die, the likelihood of surviving a full resuscitation was less than 1%.  And “codes” are brutal:  ribs get broken, livers and spleens lacerated, lungs punctured.  This is certainly not all the time, but the older and more frail a person is, it is more likely that it will result in what feels to us like torture and it is least likely that the person will survive.  Some states allow a physician, with certain protocols to say it is medically futile.

There have been times when it is clear to me that a family knows they do not want to prolong suffering and yet are incapable of making the decision to have an order of “do not resuscitate.”  When I talk about the odds for the patient as being exquisitely low and say I can sign the form saying and documenting why it is medically futile, they are grateful.  This was not the case with Eva’s son.  He wanted the “full code.”

What could I do?  What should I do?

_____________________________________________________

The image is a sculpture by Ron Mueck called Old Woman in Bed can be found here. 

 

Ethical questions

Why did I write that story yesterday?

Several conversations brought it back to mind.  One was with Steph Cooper, the ER doc I mentioned, who told me about the piece she wrote on “ethical crises in clinical care.”  (I am still waiting for the link Steph to share it here and increase your readership.)  A second was with some faculty and students with whom I am working to address needed development of our “learning environment.”  We have ongoing discussions about how to make it safe for students, staff, faculty, and residents to report what they perceive as unprofessional behavior, abuse, or mistreatment.  Even defining what is abuse and mistreatment or unprofessional behavior is fraught with large gray zones.  Add to that the differential ranks and our students often don’t feel they can directly give feedback to someone who is going to grade them, especially before the grade is submitted.

I understand that vulnerability and that is why we are creating many avenues for conversation and/or reporting.  At the same time, maybe all people have a line in the sand where, if crossed, they would be willing to stand up in the moment and speak.  Many ethical dilemmas are much smaller than the story I told yesterday and some are larger. Each asks us as individuals to make a determination whether to stand, where to stand, how to stand, speak and walk, and about the direction action or inaction will take us as individuals and as communities.

 These challenges happen in everyone’s lives. I will have some more examples from clinical care over the next few days. Please,  share ones you have faced.

Maria did not have tubal ligation surgery that day.  My colleague and I definitely wondered if we were outliers, which is what the chief resident wanted us to believe. I have no way of knowing how other students would have responded, but would have liked to believe, would still like to believe that my classmates and others would have the same response that we had.

In those days, at that hospital, the on-call attending faculty doctor was not always in the operating room with the chief resident. He was however in the hospital.

One of us stayed in the operating room, threatening to lie across Maria and prevent the surgery.  The other went to call and find the attending doctor and report the incident.  He came immediately, stayed for the cesarean section, and told the chief that he could not perform a tubal ligation. He later spoke with us individually and with the chief resident, making it clear that this incident could not be repeated and that the impact on our performance evaluation from this incident would be neutral from the chief’s perspective and positive from his.

Challenged

It was a typical night on call, if you can name any night on call for a third year medical student as typical. And as much fun as our obstetrics rotation was, this night was would turn out to be neither fun nor typical.

There were probably a couple of patients in labor. Though I don’t remember, that would have been the usual scene.  What I do remember is one woman I’ll call Maria.  Maria arrived having painful contractions three minutes apart for the prior several hours.  This was going to be her 7th birth, which had the other student and I almost gleeful that one of us would actually get to help with a vaginal delivery that night.  If we were lucky, it might even be early enough to get a little sleep in the call room. The “call room” would be better named the bunk-house, with its four bunks and central location a few uninsulated feet from and not out of earshot of anyone in labor.

When she arrived, Maria said her pregnancy had been quite normal although she didn’t have all the prenatal care that was recommended back in 1977.  She recently moved from El Salvador to San Francisco with her husband and 4 of their children, leaving two behind living with grandparents.  They spoke no English.

She was indeed in labor and her cervix was starting to dilate and with each contraction she would concentrate, close her eyes, wipe some sweat from her face and breathe slowly.  The thing we students could do best was coach a woman in labor, but Maria was a pro and clearly could have taken over our job if she were not busy right in those moments. After a bit she and her husband went for a walk around the ward, stopping for each contraction, hoping the labor would speed up. She went from bed and some fetal monitoring to walking every hour or so for many hours.  She did not dilate further.  After many hours and into the middle of the night, “we” (that would be the resident on the service) decided to augment her labor with oxytocin, a medicine that strengthens uterine contractions. Her contractions got closer together and the continuous fetal heart monitoring showed the baby to be tolerating the stronger and closer together contractions.

The head would not descend in her pelvis.  That’s not too unusual for a woman who has had several pregnancies and births, but at some point the cervix needs to dilate and the head needs to descend.  She made it to 6 centimeters dilation and we realized the head was not in a great position to descend.  Usually the head is either occiput anterior (the baby facing the floor if the mom is on her back) or occiput posterior (the baby facing the ceiling, or sunny side up, if the mom is on her back).  This baby was facing one side, or occiput transverse. Babies in this position often have difficulty navigating the birth canal.  We were not able to rotate the head and the head remained too high to safely break her bag of waters and see if then we could rotate the head or if it would descend on its own.  There was another aspect to this labor. Her other babies, born in El Salvador were in the 6-7 pound range and we estimated this baby to be about 9 pounds.

The senior resident discussed the lack of progress with Maria and her husband and she signed the consent for a caesarian delivery.  The operating room was set up and she was taken back and given an epidural anesthesia. I was a bit glum that there would not be a vaginal birth, but along with my fellow student, I was glad to be there and assist with the surgery.  While walking to the operating room with the chief resident, he was talking us through the steps of the surgery.  And then he said, “While she is open I am going to tie her tubes.  She has had plenty of children and does not need more.”

Game changer.  Here we were mere mice in a sea of dragons.  We had been trained to accept our position in the pecking order (though the women in my class were a bit rebellious about this and the many comments made about women invading medicine).  But we KNEW where the power was.  He was in his fourth or fifth year of residency, a full 6-7 years ahead of us.

And he was saying he was going to sterilize a woman who had not given consent.

The year our class entered medical school 3% of the classes nationally were women.  My class at my school was 30% women.  And we were an older and proud to be there and cantankerous group who knew the laws about reproductive health.  Maria had Medicaid and the federal law had been passed a few years prior that required a 30 day period between signing a consent for tubal ligation and the surgery happening (unless for instance there was a premature delivery).

This is called an ethical crisis in medicine.

What should we do?  What could we do?

We told the resident he could not do this.  He told us it was not our decision.  We told him he could not do this.  He said he would have us fired, kicked out of school if we tried to stop him.

What should we do?  What could we do?

I was visiting with a friend, Steph Cooper, an ER doc who writes beautifully about this work we do and its challenges (she has a great piece in the manuscript I am trying to publish). I hope she will send me the link to the narrative she published recently about ethical crises.  They can be big or small.  They are real.

This story:  to be continued.

 

Choosing Wisely

Yesterday I mentioned that Doctors estimate our country spends $6.8 billion in unnecessary tests.  Who can fix this?  We all can, doctors, health systems, patients, and insurers.https://i2.wp.com/ih.constantcontact.com/fs011/1101428692505/img/279.jpg

In 2011 The National Physician’s Alliance (NPA) published work on the Good Stewardship Project, a pilot  which was developed with funding from the American Board of Internal Medicine Foundation.  The initial effort worked with physicians in three specialties to “define 5 things “you can do in your practice” to provide excellent patient care while appropriately conserving health care resources in the fields of internal medicine, family medicine, and pediatrics.”

Subsequent to that pilot the NPA continues to work with specialties to take on both looking at the evidence and the education of patients regarding tests that have no evidence and should be considered unnecessary.  The aim is to engage physicians in conversation with their patients to choose “care that is:

  • Supported by evidence
  • Not duplicative of other tests or procedures already received
  • Free from harm
  • Truly necessary”

Consumer Reports is on board helping to develop materials for patients.  By 2014 more than 30 specialty organizations will have created evidence based lists of care that is not supported by evidence and/or may be unnecessary.  This represents over 500,000 physicians who are represented by these groups who commit to work with their patients to make wise choices. The link to all of the specialty organizations, with links to their lists is here.

The Family Medicine list, as an example, is below. The data and evidence is here.

1. Don’t do imaging for low back pain within the first six weeks, unless red flags are present.
2. Don’t routinely prescribe antibiotics for acute mild-to-moderate sinusitis unless symptoms last for seven or more days, or symptoms worsen after initial clinical improvement.
3. Don’t use dual-energy x-ray absorptiometry (DEXA) screening for osteoporosis in women younger than 65 or men younger than 70 with no risk factors.
4. Don’t order annual electrocardiograms (EKGs) or any other cardiac
screening for low-risk patients without symptoms.
5. Don’t perform Pap smears on women younger than 21 or who have had a hysterectomy for non-cancer disease.
6. Don’t schedule elective, non-medically indicated inductions of labor or Cesarean deliveries before 39 weeks, 0 days gestational age.
7. Avoid elective, non-medically indicated inductions of labor between 39 weeks, 0 days and 41 weeks, 0 days unless the cervix is deemed favorable.
8. Don’t screen for carotid artery stenosis (CAS) in asymptomatic adult patients.
9. Don’t screen women older than 65 years of age for cervical cancer who have had adequate prior screening and are not otherwise at high risk for cervical cancer.
10. Don’t screen women younger than 30 years of age for cervical cancer with HPV testing, alone or in combination with cytology.
11. Don’t prescribe antibiotics for otitis media in children aged 2–12
years with non-severe symptoms where the observation option is
reasonable.
12. Don’t perform voiding cystourethrogram (VCUG) routinely in first
febrile urinary tract infection (UTI) in children aged 2–24 months.
13. Don’t routinely screen for prostate cancer using a prostate-specific
antigen (PSA) test or digital rectal exam.
14. Don’t screen adolescents for scoliosis.
15. Don’t require a pelvic exam or other physical exam to prescribe
oral contraceptive medication.

Needs, wants, resources, responsibility

     Trolling the blogosphere I came upon a blog that had me thinking for several days, trying to sort through my initial reactions and to form some understanding of both my gut and of reasoned approaches that might help this blogger.  Her story raises questions about need vs want, how we understand need, the ways need can be met, and an ethical dilemma for the doctor. How do we both respect patient autonomy and voice in managing their lives and at the same time be stewards of health care resources, using them wisely when they are known to improve the health related result for the patient and not using them when they do not meet this mandate?

     Imagine you are a young woman who had a pregnancy loss at 23 weeks.  https://i0.wp.com/www.radiologyinfo.org/photocat/popup/ob-us-fetal-profiletri1.jpgThe tests on the fetus did not show any chromosomal or structural abnormalities.  There were neither knots in the umbilical cord nor anything abnormal about the placenta.  Now you are pregnant and nervous.  In fact you have so much anxiety that you want to have a Doppler machine (the little machine that lets you hear heart tones) so you can hear the heart tones whenever you feel anxious, to calm your fears.  A prescription was not given to you because it was not felt to be medically necessary.  This has been upsetting you and your anxiety increases.

     You call your doctor and ask for a same day appointment with an in-office ultrasound to reassure you.  You are told the ultrasound is not necessary and given an appointment later in the week.  Since you had been promised immediate access if there were problems with the pregnancy, you are angry and even more worried.  Why are they treating you this way?  Why can’t they understand that you deserve care that gives you what you need?

     You leave your next visit reassured that you are still pregnant and with the prescription for the Doppler. What is it that you need, really?  A Doppler to take home?  An ultrasound that day? How often will you used the Doppler?  How often do you think you need a view through ultrasound?  No one commenting on this blog was asking these questions.  There was an outpouring of empathy around the prior fetal death and the current nervousness.  And virtually all shared her anger about not getting what she “needs.”  No one questioned her being nervous.  (I don’t either).

     Everyone accepted at face value what she said would help. That I do question. And on that subject, what role do we each play in the high cost of medical care in the US?  Just looking at medical tests and whether they are necessary or not, current estimates suggest that we have about $6.8 billion spent annually in unnecessary medical tests.What’s necessary?  Whose responsibility is it to be stewards of smart choices?  We know new technology woos doctors, often long before there is any evidence that using the technology has any impact on the health of individuals or of communities. We know tests are often done because a physician is nervous of being sued if something is missed or has delay in diagnosis.  And a family asking for tests or treatments sways doctors as well.

     What the patient in the above example needs to navigate this pregnancy is a lot of support and understanding about her loss and her anxiety about this pregnancy. Certainly she would be helped with quick access to her providers when she has either worrisome symptoms or a rise in her anxiety.  She also would benefit from evidence based strategies to manage her anxiety. There is evidence that suggests that regular ultrasounds (and that would include frequent at home Doppler following of fetal heart rate) does not improve the likelihood of a healthy baby born at term.

      It would be great if those tests calm her.  And if they do not?  Then what?  Whether she got the Doppler or the ultrasound, she still can take well proven steps to be less anxious. These include exercise, good diet, and training thoughts to have a more balanced and accurate view of the situation.  Mindfulness also has and excellent track record for managing anxiety. Many cities have Mindfulness Based Stress Reduction (MBSR) sessions based on the work by Jon Kabat-Zinn. In the case of this pregnant and legitimately worried woman, what she thinks she needs may not be what actually helps her.  What is the responsibility of her doctors?  Give her what she wants? Or give her what they think she needs?

The image is from radiology.org

All in a flash

Here is your assignment “class.”  Take a look at this sequence of pictures and write the story.  Let’s see how many variants you can develop.  Have fun with it.  Just hit comment and narrate the pictures.

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rjk2a

Image

Image

Anticipation

     The quiet in the house on this early barely light fall morning allowed in the sound of rain on the metal gutters.  I could feel the chill and see the ground covered with leaves shaken loose during the night. Appreciating the silence, my mind wandered to a few moments of anticipation.  It has been a long time since little feet ran across the wood floor and preschool laughter filled the air, delighting at the smallest and simplest pleasure.  Occasionally a young colleague or friend will be by with a young child for a work event but bed times and awakenings are distant.  When I tried, I could almost bring the memories forward, and closing my eyes, allow them to fill today’s space.

     Tonight that changed.  Three little boys fill the house now for too short a stay, bringing their stories, their hugs and laughter, their happiness to be here, to see I have legos and books and cars.  Even Allie the aged canine seems energized and did a few rapid runs around the hall to entertain and as the boys settled, they  enticed her close for a petting frenzy.

     In bed now, likely not asleep yet, I know they will be the alarm clock I forgot to bring down to where I will sleep, letting their parents have my room close to them. Tomorrow morning’s early light will be different than today’s.  That much I know.

Vulnerabilities

Pia and Zach posed some interesting questions. Thanks for those.  Here is what they asked:

“i’m interested in hearing your take on the intersection of gender and race. my impression is that race and gender become important in situations of vulnerability, that is when these categories are noticed — what do you think? in my experience, a narrative has to arise in order to explain this position of vulnerability/inferiority, but do you think it could also arise out of a situation of perpetuating superiority/privilege? for me, race and gender are often interchangeable categories of hierarchy, and are hard for me to separate, but perhaps they are separate. additionally, do you think that we (even the learned liberals ;) ) perpetuate disparities in health, in salaries, in social position? what’s your take on that? lotsa questions!”

Race and gender in my mind are not interchangeable but they can definitely intersect.  Is race real?  We all have a racial identity and that colors both opportunities and perceptions of self and others and is often a major contributor to policies that differentiate access, opportunity, and position in the social structure.  Given what we know now about biological diversity, is there good science behind race?  We know that most racial classifications are based on pheontype (skin color, hair type) and not on genetics and that there is more racial diversity within “racially classified groups” than between two different groups. Race is better understood as a social construct from which other policies and definitions have emerged.

There are social constructs about gender and there is a biologic basis for assignment in most cases, but not for beliefs about differences in capabilities.

Both gender and racial beliefs can play into health and health status, because much of what makes up health is from the social determinants. Health, defined by the World Health Organization in 1948, is “a state of complete physical, mental and social well-being and not merely the absence of disease of infirmity.”

If by vulnerable you mean at risk for poor health outcomes, less opportunity for optimal social and physical health, yes both race and gender can result in some group relegating based on “race” or gender to a status that has vulnerability.  First around the world, racial designation and gender are factors in what is being called social exclusion or having a lesser relationship than another group in the social, cultural, political, and economic domains.  This exclusion  results in less access to opportunities and resources, which impacts health.  Second, gender inequalities result in poor outcomes for women and children of both genders and we know that education of women plays a major role in improving the economic health of a country.  The drawing below from Dalgren and Whitehead (1991) outlines what impacts health; clearly there is much more than from genetic burden of disease.https://i0.wp.com/www.scattergoodfoundation.org/sites/default/files/social_determinants_of_health.jpg

 

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Why are there health disparities?

It is getting late and I want to post this soon.  I brought up race yesterday and implied (with the study I did) that is is not likely about biology when we think about the differences in the health of different communities.  Today, let’s look at some of the differences in health, just in our country.  To what might you attribute these?

The following is a cut and past from the Center for Disease Control

“Health Disparities – Examples

    • African American women and men 45-74 years of age in 2006 had the largest death rates from heart disease and stroke compared with the same age women and men of other racial and ethnic populations.
    • From 2005-2008, people with the largest prevalence of hypertension were 65 years and older, African American adults, U.S.-born adults, adults with less than a college education, and those with public health insurance (64 years and younger), diabetes, obesity, or a disability compared with their counterparts.
    • Among many sex-age groups, the prevalence of obesity from 2005-2008 was lower among White Americans than among African Americans or Mexican Americans. Among females aged 20-39 years, the prevalence of obesity was largest among African Americans.
    • Infants of African American women in 2006 had death rates twice as large as infants of White American women.
    • Adolescent and adult African Americans ages 15-59 years in 2007 had the largest death rates from homicide, as compared with other racial and ethnic populations of the same ages.
    • HIV infection rate among African Americans in 2008 was the largest rate compared with those of other racial and ethnic populations.

Mother and Child

  • Hispanic American and African American adults aged 18-64 years had substantially larger percentages of uninsured populations compared with Asian/Pacific Islander and White Americans.
  • Colorectal screening obtained in 2008 by African Americans, Hispanics, and American Indian/Alaska Natives was lower than screening obtained by White Americans.
  • During the 2009–10 influenza season, lower influenza vaccination coverage was observed among African American and Hispanic American adults than among White adults.
  • In 2009, high school completion among African American adults was the second lowest (second to completion among Hispanic adults and similar to the completion among American Indian/Alaska Native adults).
  • In 2009, the percentage of African American adults living in poverty was among the largest compared with other racial/ethnic populations (similar to percentages among American Indians/Alaska Natives and Hispanic Americans).
  • In 2009, African American adults more often lived in inadequate and unhealthy housing than White adults. The percentage of African American adults living in inadequate housing was similar to percentages among American Indian/Alaska Native and Hispanic adults. These populations had the largest percentages of adults living in inadequate housing.”
 
 

From where do some stories come?

      One of my Hedgebrook friends wrote me and said, “Great blog. I’m interested in the medicine and social justice side. it’s intriguing. If I landed on it and didn’t know you that would draw me. and thanks for plugging us all.” I said I would answer questions so I guess we seque to talk about a topic that will come soon, maybe even tomorrow unless I take a twist to a different direction: health disparities and stories found there. First though, what do you think about when I mention the word RACE.  I do not mean marathons, or automobiles, or Olympic sprints.

     Do you personally identify with a race?  What is your narrative about race? Not an ethnicity, either, but a race? What makes up race in your mind? When were you aware of race?  How?  How do you think beliefs about race influence policy? Is there good science behind that?

     A few years ago I did a study with colleagues.  It is well known that African Americans are more likely to die from colon cancer than their White peers.  The prior two hypotheses were:  1) they get diagnosed later (hmm is that lack of access, cultural beliefs about screening, not being offered screening at the same rate as Whites?) and 2) there is a biological difference.  Our study found that controlling for stage (so all those with stage II and III were in the same boat, presumably found at the same time), IF African Americans received the appropriate treatment (the “standard of care” of the right surgery and 6 months of chemotherapy), their 5 year survival was the same.  Now the question of why some do not get the standard of care is still open, but I think the biology question has at least one response. Health disparities is a huge topic for discussion, but first, where do they come from?

     If you live in the Puget Sound Region, listen up.  Currently the Pacific Science Center is hosting “Race, Are We So Different?” We are one of 25 or so cities to host it, and we are, so far, the only city/county to host intentional conversations about race, diversity, inclusion that draw viewing the exhibit beyond the individual experience.  The exhibit presents conversation about race from three perspectives:  history, human variation, and lived experience.

     King County and the City of Seattle Race and Social Justice Initiative (RSJI) are supporting groups to meet before viewing the exhibit and again after viewing it.  They have trained facilitators who will come and meet with any group for the two sessions, for free.  I participated in the pre-exhibit session, will now go to the exhibit, and then participate in a post-exhibit session. While the material might not be new for some of us, the conversation was invaluable and the more conversations we have, the more we might move ourselves forward as humans.  

     It is easy to register groups. 

              From the website:“Each Group Workshop has two components: a 75-minute pre-exhibit session and a two-hour post-exhibit session.These experiences are designed for groups to use the exhibit to expand and apply their understanding of racial equity. There are many ways that groups can use Group Workshops, including: to initiate or deepen work around racial equity, diversity and inclusion; as a training or team-building activity; to lay the groundwork for new or revised programming, policies or initiatives.To register for a Group Workshop please visit RSJI site.”

     If you are in the area:  invite a group from work, family, community and let’s get the conversation going.  If you are not close enough, you can visit this site and pull groups together to watch and discuss the material.  www.understandingrace.org.

NaBloPoMo

     The blogging world has NaBloPoMo or National Blog Post Month.  According to this site, it started as a joke.  It is now every month with November being the big month in conjunction with NaNoWriMo.  Sponsored by BlogHer and WordPress, bloggers have until 11/5/13 to sign up and commit to a post a day.  There are almost 1800signed up at this time.

     Are you wondering what this has to do with you? Well, I apologize for the 30 emails you will get telling you I have a new post and for the fact that writing one a day will probably mean that the moments I talk about are going to be all over the place.

     If you have any particular moments you want to share, pass them on and I will post them, well maybe I will.

Inspiration

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Annie, Mieko, Claire, me, Elin and Olumide (in front) on a break from our literary mission, after watching one of the presidential debates

Do you have an interest in writers you may not know?  if you want to support women writers, take a few moments and read about these women, and buy and support their work.

Each of them was at Hedgebrook for at least a week overlapping with me in the Fall of 2012.  They are brilliant, funny, insightful and very able to put all of that to paper in poetry, drama, essay, fiction, memoir, and science writing.  Humbled in the presence of their talent and enriched by their generosity, I hope my work is informed by their wisdom.

Olumide Poopola (poetry, drama, fiction)

Annie Holmes (political history, memoir, fiction)

Donna Hemans (fiction)

 Simha Evan Stubblefield

Claire Dederer  (essay and memoir)

Mieko  Ouchi (drama)

Karen Joy Fowler (fiction)

Elin Kelsey (environmental science)

And another plug for Hedgebrook Cookbook: celebrating radical hospitality

heading home

Three residents heading home to their cottages after dinner, their baskets full with breakfast, lunch, and treats for the next day

 

Radical Hospitality

What would epitomize “radical hospitality” to you?Image

Some people asked about the trees in the header.  They are at the corner of Double Bluff Road and Milliman on Whidbey Island in Washington State and these trees take me back to last year, taking the picture on a bike ride during a 3-week residency at Hedgebrook, a woman’s writers’ retreat. Picture 6 cottages spread out on a 40-acre property of old growth forest, meadows, gardens, and a farmhouse and barn.  Each of the six cabins houses one woman writer who was offered a residency of two to six weeks. Fir, which was mine is the pictured one. The women who come to Hedgebrook are from all over the world and the founders wanted women from dense urban areas to not feel too alone or frightened in the woods. Designed with exquisite intentionality, each handcrafted cottage is in view of one other cottage.

Each has a work area, a cozy chair with blanket and light for reading, a wood stove (and unlimited wood and kindling cut to size for the residents), a small kitchen and implements for one.  Each has a half bath and a sleeping loft up a ladder with an arched window that opens to all the night sounds of the forest.  The bathhouse, in a central clearing, has two shower rooms, a claw foot tub room, and a washer and dryer.  The founder, Nancy Nordoff believed in the power of nature to inspire, in the importance of women having a room of their own, and of the need for more women’s voices to come forward in print.

Imagine getting up each morning, building a fire, fixing breakfast from the food foraged in the farm house kitchen, making a pot of French press coffee or putting the kettle on the wood stove for tea and settling in to write, undisturbed by anything other than your own thoughts.  The night before you brought up your foraged food and a lunch, specially prepared by last night’s chef, ready to heat and eat when you are ready.  More time to write fills the afternoon, or maybe you will include a walk, bike ride, or reading and researching.  Then it is dinner, at the farmhouse with the other 5 residents and the chef.  And oh the food: most often local, beautifully prepared, and delicious.  Check out (and buy) Hedgebrook Cookbook; Celebrating Radical Hospitality.  Conversations over dinner are far-reaching and rich with reading suggestions, thoughts about writing, and life.  After dinner you might go back to your cabin to work more, read, spend the evening in continued solitude, or reconvene with the other five residents at one person’s cabin to share readings from everyone’s work.

The place, the women, the nurturing by the staff…what an idyllic and protracted moment.   Can you imagine radical hospitality now?