Category Archives: social justice

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?

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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.

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.

 

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://i1.wp.com/www.scattergoodfoundation.org/sites/default/files/social_determinants_of_health.jpg

 

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