Goodbye Lia Lee

Lia Lee died on August 31, 2012 in Sacramento, California. She was 30 years old.

It is likely you have not heard of the Lee family. They arrived in the United States in 1980 from a refugee camp in Thailand with fewer possessions than they had children.

They endured the incomprehensible journey of many refugees: Forced out of their village in Laos; a month-long walking journey to nearby Thailand;a year in a refugee camp; finally settling into a small apartment in the city of Merced, California – a complete mismatch for a people who worked the land.

They would later say that all that was nothing compared to the nightmare that awaited them in the United States when they encountered the American health care system through one of their children, Lia Lee.

That story began in 1982, the year of Lia’s birth when, at three months old, she had her first seizure. With that seizure and a diagnosis of epilepsy a Grand Canyon sized cultural chasm formed between the medical system treating her and the family attempting to care for her. It was about perception and care; western biomedicine having a face-off with traditional beliefs that included herbs, teas, and animal sacrifice.

In this case there was no winner – everyone lost, especially Lia Lee. 

The Spirit Catches You and You Fall Down

A book telling the story was published in 1997 and it, more than any other book, transformed the way we do care with patients whose beliefs differ dramatically from those of dominant American culture. The book is called The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, And the Collision of Two Cultures written by Anne Fadiman. Part anthropology, part history, and part biography, the book captures a troubling story and tells it well.

With Lia’s diagnosis of epilepsy (called “the spirit catches you and you fall down” or quag dab peg in Hmong) came medical treatment, medical testing, and worried parents. But at heart was a clear difference in cultural beliefs; beliefs that unwillingly became barriers to Lia’s care, not by design, but by a default system that dismissed the beliefs as irrational.

As the story unfolds, the reader feels a profound sense of sadness and anger. Both sides cared for the child (though arguably the parents had far more at stake); both sides wanted to see her get well; but there the similarities ended. The author relays the story with such compassion that neither side comes across as the ‘bad guy’; instead there is a longing to see them understand each other and come to a point of negotiation around Lia’s care.

But that never happens. 

Instead Lia has a grand mal seizure and there is nothing more the hospital can do for her. Brain dead with a raging fever the medical professionals send her home to die, but she doesn’t die. Treated with loving and sacrificial care at home, she lives, but in a vegetative state.

So now, over 25 years after she was supposed to die, Lia has died. How can I feel so sad over the death of someone I’ve never met? I think it’s because every time I read or recommend the book I realize anew that Lia’s life didn’t have to turn out this way. It’s one of the reasons why I feel so strongly about some of the work I do, and that is speaking and teaching on the importance of culturally responsive care.

So as I think of her death I am grateful to the author, Anne Fadiman for beautifully capturing a story that is so critical to understanding cultural collisions in health care. And I am profoundly grateful to the Lee family for their willingness to have their story told; a story that spread far wider and farther than I am sure they could imagine.

I am also grateful that this family I have never met taught me so much about life and the sanctity of life through their care of this child turned woman. Someone who, from the world’s perspective as one who could no longer function on her own, was of little use and value, yet to them infinitely precious.

So goodbye Lia. And thank you.

The Many Uses of Olive Oil

There were 6 of us in a small examining room designed for two people — the doctor and the patient. In this case there were two women from the Sudan, two nurses, one patient navigator, one interpreter, and one baby.

It was crowded.

To say I was invited  to come to this community health center was something of a delusion, it was more as if I had been challenged to come – challenged with strong words: “This program isn’t working! You try to use this life-style education tool with culturally diverse patients”

To give context the “challenger” was referring to a health assessment that my office had developed to gauge whether a person is ready to make changes to their lifestyle. It included questions on weight, healthy fats, exercise, fresh fruits, vegetable consumption and more.

I was not a fan of the questionnaire – I had worked with people from different cultural backgrounds my entire professional career and knew that this tool had been developed from a bias of western biomedicine. As such, it had limited use.

But I accepted the invitation knowing that at least they would see I was on their side.

So there we were: health professionals, patients, and a culturally biased assessment. Speaking through an interpreter I began talking. I introduced myself and asked if I could ask them a few questions. They nodded in assent – no problem.

And so I began:

“Are you a healthy weight?” Blank looks.

The interpreter tried again, and then looked at me. “This is not relevant,” she said. “They do not weigh themselves.” Of course, they didn’t. What was I thinking? They were women who had escaped the Sudan, made their way through the arduous process of refugee camps and resettlement and I was asking them about healthy weight. Wow. But determined to continue I pressed on.

“Do you eat healthy fats?” More blank looks. My problem-solving mode switched on and I thought – ok, I’ll ask if they use olive oil – that’s a healthy fat.

New olive oil, just pressed. It has a dense co...

“Do you use olive oil?”

Their eyes lit up. They smiled. “Oh yes! We use olive oil all the time”. Good, I thought!  We’re making some progress…..

“Yes olive oil. We love olive oil! It is wonderful. We use it every day…..on our hair”

I began to laugh, and they with me. The whole encounter was so absurd. I would have gotten more information on their health and eating habits by having a normal conversation and inserting the right questions at the right time instead of following this biased and culturally illiterate tool.

The story is a great example of some of the challenges presented in working with patients from different countries and cultures. The healthcare professional (whether nurse, doctor, social worker or any other) comes into the clinical encounter with his or her own predetermined biases, values, and beliefs. Added to that is the often inflexible culture of western biomedicine under the umbrella of the institution. All of this mixes into a potentially difficult interaction with the patient.  We then wonder why patients won’t come back…or get offended…or don’t do as we want them to.

Culturally responsive care is critical to healthy outcomes.

But changing this dynamic is not easy. It’s a journey and as such takes time, preparation, and mile markers.

One of the first mile markers in learning to communicate across cultural boundaries is to understand one’s own cultural beliefs and values. Only then can we better interact with those from different backgrounds. If we don’t know what we believe and value, what is unique to our cultural backgrounds, we are ill-equipped to forge into relationships with those vastly different from us, even less ready to offer them good health care.

And after that it’s about listening to the stories and constantly being willing to learn and adapt.

It’s interactions like the one I’ve described that help me on this journey of communicating across cultural boundaries. They remind me that I have to be ever flexible and willing to see from the other person’s perspective; recognizing both literally and metaphorically the many uses of olive oil.

Moms and Babes – the First 1000 Days

Every day I wake up and I know my children have enough to eat. It’s always been that way. When I lived in Chicago with a new-born baby, breastfeeding for the first time, I would wake up and have a nutritious breakfast, full of protein and the calories necessary for my baby to thrive. When we lived in Pakistan, a land where the average daily wage is three dollars and fifty cents and poverty inescapable, my children were well nourished babies and toddlers. Egypt was the same.

No matter how poor I thought we were, there was always food, there was always healthcare. But I, well (perhaps over?) nourished, am not the norm.

Each year over 2.6 million children die of malnutrition.

Save the Children has published their “State of the World’s Mothers” report for 2012. This annual report focuses on the first 1000 days of life, that critical period of development for a child — a time when the effects of poor nutrition will yield long-term results that cannot be reversed.

The period begins at the start of a woman’s pregnancy and goes through a child’s second birthday. It is during this time that good nutrition is necessary for a child to grow both intellectually and physically, in brain and in body. Malnutrition not only affects the baby, it affects the entire country and ultimately the world through extending poverty, lower earning power and loss of human potential.

The report looks at which countries are successful at providing adequate nutrition during these first 1000 days and which are not. But it also goes further and looks at solutions that are not costly and can make all the difference in a child’s life.

Some of Save the Children’s key findings include:

  • Children in an alarming number of countries are not getting adequate nutrition in their first 1000 days. “Out of 73 developing countries- which together account for 95 percent of child deaths – only four score”very good” on measures of young child nutrition”
  • Child malnutrition is limiting the future success of millions of children and by default their countries
  • Economic growth is not enough to fight malnutrition. It seems like it should be so easy, right? Just offer more aid, more money, increase assistance to farmers. But like many things it takes not only money but also policy change in a world where women and children don’t stand on the highest rung of the global ladder.
  • Health workers are the key to success. By this they don’t mean doctors and nurses in traditional primary care settings, but rather community health workers and midwives stationed in communities and available to bring community care of teaching on hygiene and nutrition, vitamins, promoting breast-feeding,and treating diarrhea.

The report is not all bleak. Solutions are introduced in the form of 6 low-cost nutrition interventions that were identified. These are iron folate, breastfeeding, complementary feeding, vitamin A, zinc and hygiene. None of them are expensive and Save the Children estimates that these could be provided for a cost of $20/per child for the first 1000 days. The report suggests that over 2 million lives could be saved through world-wide implementation of these interventions.

But for the interventions to work people and policy have to come together and care. So what to do? It’s a Tuesday morning and if you are like me you are probably sitting a bit removed from all of this — I just had a coffee worth half a day’s wages for a Pakistani.

I’m told in the book of James that “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” and I can believe that malnourished children, and moms who can’t afford the nourishment fit well into that category.

A start for me is to take a closer look at this 70 page report.  Awareness is always a first and necessary step.

And after awareness I’m not sure – I do know this —  it is not about guilt, not about feeling forced, rather any steps are out of a greater understanding and commitment to my faith and God’s world.

An Afternoon of Hope Tea Party

Pakistan is an amazing and complex country and a country of extremes. It boasts some of the highest and most beautiful mountain ranges; invites one in to incredible and gracious hospitality; arguably has the best food in the world and, with all that, has some tremendously difficult situations for women.

So it was early on in life that I met women with tremendous disadvantages, many in situations that seemed hopeless. It was before I turned 20, while volunteering at a women’s and children’s hospital in Shikarpur, Sindh, that I first met a woman who had a fistula. By definition a fistula is “a medical condition brought about by obstructed labor and/or trauma leaving a woman with incontinence,” The resulting symptoms are that the woman constantly smells like urine and can never get clean. But that is just the medical definition. The practical definition is loss of family, isolation, being seen as a pariah, and relegated to a cursed position in areas of the world where being a woman brings challenges from the first days of life. Fistulas are indescribably awful for the woman who has one.

”These are the women most to be pitied in the world,” said Dr. Hamlin. ”They’re alone in the world, ashamed of their injuries. For lepers, or AIDS victims, there are organizations that help. But nobody knows about these women or helps them.” (Alone And Ashamed, by Nicholas D. Kristof, Published: May 16, 2003)

Consider these sobering statistics about fistula:

It is estimated that 90% of fistula patients consider suicide as a solution. (Kristof and WuDunn, Half the Sky)

According to the World Health Organization, an estimated 2-5 million women have fistula worldwide.

The World Health Organization estimates as many as 50,000 — 100,000 new cases of fistula each year, yet the global treatment capacity is less than 20,000 cases a year. (Hope for Our Sisters)

The treatment is a surgery that has a 90% success rate if there are no complications and with complications the rate is still fairly high at 60%. It is not an exaggeration to say that the treatment saves lives. In a world where these women have been cast out like garbage, alienated and isolated, this surgery brings a hope that radiates through their world, forever changing their future.

“Nothing can equal the gratitude of the woman who, wearied by constant pain and desperate with the realisation that her very presence is an offence to others, finds suddenly that life has been given anew and that she has again become a citizen of the world,” Professor Chassar Moir. (Hamlin and Little, The Hospital By The River)

So why on a Saturday am I bringing up this serious topic? Because today at 1pm eastern time my niece, Christi-Lynn, a nurse and woman who is passionate about women’s health worldwide, is holding a special tea to raise money so that one woman can receive this surgery. The cost of surgery is $450.00. That’s the equivalent of 2 months worth of cell phone service for a family of five. It’s nothing. A tiny dent in a budget – and it changes a life. I have only raised awareness for causes a couple of times, but I believe that those who read Communicating Across Boundaries have a unique love for the world, and for women. So even though you can’t attend – if you can give to the tea party “An Afternoon of Hope” to raise money and awareness of the problem of fistula’s for women around the world, please contact me at

Blogger’s Note: The organization that my niece is working with is called Hope For Our Sisters: Changing the Lives of Women One Woman at a Time. Much of the information on this post was gleaned from their excellent site. Follow the link for more information including articles as well as information on how you can host a tea. One of my good friends, Judy Long, uses her talent as a photographer to create cards to sell with all proceeds going towards Hope for Our Sisters.

Other sources:

A Sea of Pink

Dedicated to Tami, Betsy & Chien-Chi – you are amazing!

It’s October and across the United States a sea of pink is in place. Pink ribbons, t-shirts, turbans, and signs all urge people to be aware of breast cancer. Susan G. Komen For the Cure sponsored walks and community health center high teas, featuring survivors and sweets, are all on board with the need to know about the disease and fight for funds to inform, as well as the continued need for research funding.

Daily I speak with women who have been diagnosed with breast cancer. They contact me because they have lost health insurance and are desperate for a way to pay for treatment. Our program is their last resort. Some come who have stopped treatment. They can no longer pay and so cancel their appointments. Their oncologists plead with them to continue, but without insurance they see no other way. It’s their voices that I hear when I see the pink ribbons. When women contact me, they are rightfully angry. They have usually lost their jobs, with the loss of their jobs they lose their insurance, with the loss of insurance they lose their treatment, with the loss of treatment, they ultimately lose their chance at survival. I’m not being dramatic. This is fact. It’s a domino effect. Their anger is not at me, it’s at a broken system, but I’m the one who is best situated to receive it. It’s a sea of angry pink.

While to those who have never been affected by breast cancer, all the pink may seem like a cute, little campaign, to those affected the pink ribbons are symbolic of their lives. There is a quiet desperation and determination to make sure women in the future have the best possible options for treatment and survival.

I have learned much from working with these women and I receive far more credit than I deserve from them. It is some of the reflections that I have heard that have affected me the most. My friend Chien-chi said this:

I wasn’t afraid of losing my breast. I wasn’t afraid of losing my hair. I was afraid of losing my mind!

Chien-Chi is Chinese and has used her experience to be a passionate advocate for women in her community to learn about breast cancer and take advantage of early screening. She has moved her passion from heart to paper, from paper to funder, and from funder to program. I am privileged to be a small part of her program to educate the Asian American community in the Boston area about breast cancer.

So I rarely use my role as a nurse in this blog but if you are a woman and you read this you can do a couple of things. As you see the pink ribbons, don’t think of them as pink ribbons, but think of them as women, each of whom are  going through a long journey and process. Read up and talk to your doctor about breast cancer and your individual risk factors. And lastly, if you don’t have insurance and need to be screened, be aware of this program: The National Breast and Cervical Cancer Early Detection Program. It is present in all 50 states, Washington DC, and 5 US Territories and 12 tribes. I know there are varying opinions of government-funded programs but I have worked in this program off and on for over 11 years and can say, without hesitation, that the amount of money spent on the program is nothing compared to the number of lives saved – lives of moms, sisters, grandmas and friends. So – that’s my shout out to the sea of pink that may surround you during October.

“First Do No Harm”

Since Friday evening, I have tried to figure out what bothers me (besides the obvious sting from the slap in the face of humanity that the cry “Let him die” brings) about the now infamous interaction between Ron Paul, Wolf Blitzer and audience members at the CNN – Tea Party Express Republican Debate. As a full disclaimer it is important to note that I am a nurse. Nurses care not about who has insurance, their administrators are the ones who care. Nurses want to give the best treatment and care possible for the problem that presents itself, regardless of ability to pay. In analyzing the dialogue from that perspective, I feel the most disturbing part of the interaction is based on the familiar words “First do no harm“.

Ron Paul graduated from Duke University School of Medicine. He then went on to serve as a surgeon in the air force during the Vietnam War. Ron Paul had to have seen young people die senselessly and tragically. As a physician schooled in western medicine, Ron Paul would also know the words “First do no harm.” The phrase is erroneously thought to be part of the Hippocratic Oath, an oath from an ancient Greek medical text.  This oath was often recited on graduating from medical school, as a reminder or commitment of sorts for the doctor as they entered a new phase of their education – that of learning to care for patients. A phrase in the Hippocratic Oath says “I will keep them from harm and injustice” and although the oath is no longer a part of medical education, the phrase “First do no harm!”is widely known and widely used.  Rooted in Latin, it forms the basis of medical ethics. Basically a physician is called to do good, and if he can’t do good, then at least don’t harm. It serves as a reminder that the possible harm of any intervention must always be considered before going through with the intervention.

This is where Ron Paul’s response to Wolf Blitzer bothered me. In the case that was presented, not intervening is the intervention, and not intervening causes harm. Not intervening causes a young man to die. The callous cry or jeer  “Let Him Die” should have been met with a strong response from Paul, a physician, with the words “First, do no harm”. The initial silence was an indictment, not only on him as a politician, but also as a physician and as a human being. His next words, that the hypothetical patient “should do whatever he wants to do” are equally indicting. Last time I checked, people who were being cared for in the intensive care unit of a hospital, didn’t necessarily have the ability to make decisions.

I understand the problem with the sky-rocketing costs in medicine. As a state government employee, I understand frustration with government waste and daily see the effects of inefficiency. What I don’t understand is his willingness to let jeers of “Let him die” from the audience win the moment. Let’s be clear, no one really remembers what he said after the loud jeers of “Let him die”. Even if he had something substantive to say, it was lost in the moment. As a politician, he has come a long way from his days in medical school and in this debate seemed to rewrite this well-known Latin phrase to say “First make sure that the patient has done all they can to help themselves. Only then will they be deemed worthy of treatment”.

No wonder he didn’t last long in the medical profession – letting people die is far easier than helping them to live.

“Room 143 Needs a Bedpan”

“Room 143 Needs a Bedpan!”

A tirade by a nurse and a human being.

Walking down a corridor in a recent visit to the hospital, I was lulled out of my thoughts by the abrasive sound of a hospital employee yelling out “Hey! Room 143 needs a bed pan. Can you take care of it?”

Dressed in institutional blue with her name and the status of ‘Registered Nurse’ printed on a plastic pin, she had a tired body and bitter eyes.

Further on, another employee, hair dyed a bright blonde and nails turquoise was speaking in a voice that all could hear “Hi Hon! Here’s your medicine. Then we need to move you into the chair, ok?” Evidently the blonde had not been taught that speaking louder will not cause a non-English speaker to suddenly understand. There are times when I am seriously disturbed by the attitudes and platitudes of those who work in my chosen profession of nursing, and healthcare in general.

When did we decide it was ok to strip men, women, and children of the dignity of identity and make them room numbers? When did it happen that the renowned professor of neuroscience became room 143 and the Mexican immigrant in room 144 became “Hon”, a term reserved for those with whom we have a relationship?

When we strip people of their identity it is easier to treat them as widgets on an assembly line that involve chores but no human interaction. We have turned what we affectionately call our “healthcare system” into many people’s worst nightmare, only they don’t get to wake up and say “It was only a bad dream!”.

Worse, there are those who feel that a complaint will surely affect those we love who are in room 143, and bring about a pay-back of sorts that includes inadequate care and bad behavior.

I’m not asking that hospitals and clinics be resorts or day spas. I’m asking that they address the fundamentals of human dignity and realize that referring to people as room numbers fails to deliver.

I wish I had an answer to my rant. I do believe that once we figure out how to put human dignity back into the healthcare equation we will have a better foundation by which to address the healthcare crisis.

Perhaps putting human dignity in the formula starts with making healthcare less about healthcare executives (who I guarantee will one day be “Room 143”) and making it more about the patients.

Healthcare Executives vs The People

I like my job – it has its moments of discontent, but for the most part I am able to use my nursing background in a creative way, developing and promoting programs for those who are most likely to miss out on access to good healthcare. At times because of immigration status and at other times economic status, all are on the fringes of society and third culture kids do well on the fringes. Sometimes daily and sometimes weekly I speak with women who have been diagnosed with breast or cervical cancer. Everyone of them has a couple of things in common: All are in various stages of trauma and all are desperate for one reason – none of the women I speak with have health insurance. Our program walks them through a process connecting them to health care, and in connecting to healthcare they are linked to life.

It’s in some of those moments that I have a fantasy of a courtroom. The jury would be The People and the trial Health Care Executives vs. The People”. This trial would tell each womans story – how they came to find out they had breast cancer, the moment of silence that enveloped them as all other words became meaningless other than the big C, the state of shock and disbelief as they walked through the initial days where words like surgery, chemotherapy, and radiation suddenly became routine in their vocabulary and “cut, poison, and burn” became ok to be used on their bodies. Each women would have no mercy on the listeners, telling their stories complete with graphic exhibits. Exhibit A would show a picture of the breast that used to be and Exhibit B would show the head of hair they used to have before they lost both. Exhibit C would give the empirical data on cost of treatment, salaries, cost of insurance, and financial impact on their families.

Each woman would include in their narrative how they came to have no money to pay for treatment and stopped the chemotherapy or radiation recommended knowing that it could well be their death sentence. These details of the cost of insurance and treatment would be juxtaposed with tax returns of the health care executives of the major insurance companies in their state.

  • 18 million includes base salary of $1,095,785 plus benefits (Aetna CEO – Ron Williams)
  • 17 million includes base salary of $584,243 plus benefits including over 2 million dollars in a sign-on bonus (Coventry Healthcare CEO – Allen Wise)
  • 13 million includes base salary of $1,144,000 plus benefits (Wellpoint CEO – Angela Braly)
  • 8 million includes base salary of $1,300,000 plus benefits (United Health Group CEO – Stephen Hemsley)

The list would go on and each of the people listed would have a court order to be present, and answer to these women. They would have to face the shock of the women as they processed, with growing astonishment and rage, the information that the salary plus benefits of one CEO could pay the treatment costs of almost all of them. They would need to answer to the righteous anger that would undoubtedly be voiced at the greed and insensitivity of those removed from need and financial burden.

In my fantasy the trial is short but dramatic and of course The People win. It’s front page news and there is both rejoicing for the women and derision and disgust for the healthcare executives. But I am jolted out of my fantasy through the ringing of a phone and one more woman, newly diagnosed and in shock, to be a witness and tell her story in  my make-believe trial.

Bloggers note: All data is taken from in their second annual review of health plan CEO compensation. Published in May of 2010.