Category Archives: ethics

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

writing about patients

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

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

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

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

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

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

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

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

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

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

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

All stories must meet several criteria:

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

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

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

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

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

Fragments

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

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

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

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

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

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

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

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

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

Not a single story

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So many layers.

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

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

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

The story:

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

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

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

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

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

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

But that in not the point of this post.

I mentioned three lenses above.

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

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

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

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

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

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

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

Patients or money first?

What do you see in this story

The insanity of it all.

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

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

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

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

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

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

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

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

Single Story continued

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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. It’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. 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.

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

Living and Limits

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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

Other Side of the Bed

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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.

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!

The vote

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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

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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 150^th anniversary of the Emancipation Proclamation and the Gettysburg Address and the 50^th 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

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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

Code Status

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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.

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

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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.

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