Shame, Blame and Cultural Humility

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In recent posts (Cultural Humility and Language and Cultural Humility) I shared that cultural humility begins with recognizing our own silent assumptions that act as blinders. These blinders can inhibit the way in which we glimpse the world through the eyes of others. At times they can cause us to blame patients, shaming individuals in the process.

The blinders of health care which can lead to blame and shame derive from a fundamental cultural assumptions of Western culture– I am in charge and thus have personal responsibility for all aspects of my life. How do these assumptions show up in health care and how do they at times cause blame and shame?

Consider how you think about the relationship of lifestyle to prevention and wellness. Our language related to illness, as I wrote about in “Language and Cultural Humility” tends to make use of military metaphors – health care battles disease. In contrast, when we think about prevention we tend to use a personal responsibility framework embodied in the term “lifestyle choices.”

We assume based on ample evidence that eating the right food in the right amount and exercising regularly prevents problems such as obesity, high blood pressure and heart disease. Don’t get me wrong – focusing on how changes in lifestyle can prevent health problems is useful, but too often we move beyond the evidence and invoke the personal responsibility blinders embedded in the term “lifestyle choices” to judge those who are overweight, smoke or lead sedentary lives. We reason that if regular exercise and a good diet help prevent health problems, and if everyone is personally in control and responsible for their behavior, than obesity or other “evidence” of not following an “ideal lifestyle” must flow from weak-willed lack of disciplined choices. This structure of thinking is equivalent to viewing obesity as a character flaw which then leads to blame and shame.

“Lifestyle choices” represents our Western cultural blinders of control and personal responsibility. We silently say to ourselves that “it is all about the choices we make.” The term also reflects biases flowing from a culture of affluence. We silently assume that everyone can afford fruits and vegetables rather than macaroni and cheese or that regular exercise need not need compete with more basic needs to make it day to day.

I do not intend to diminish “agency,” the sense that our decisions matter. I am suggesting that “agency,” though important, can act as a cultural blinder leading to judgment, shame and blame.

Avoiding the judgmental shame/blame trap implicit in “lifestyle choices” requires us to recognize our deep- seated cultural biases and to replace judgment with curiosity. As an example, the personal responsibility framework is one of many ways to view prevention issues. Like other frameworks it is not right or wrong, rather simply more useful (when it helps prevent health problems) or less useful (when it leads to judgmental blame). Another alternative viewpoint to personal responsibility is that obesity is a species problem which develops from humans being separated from the cycles of famine that marked most of our history. In this viewpoint, humans developed metabolic defenses to cope with famine and now that we have have moved beyond the environment for which we evolved to handle, obesity occurs.

Do you at times judge yourself or others for what you consider ‘lifestyle choices”? Reading this blog, do you find yourself irritated and wanting to assert: “but prevention is about choices and personal responsibility”? (If so, you may have a cultural blinder). Please use comments below to describe your deep-seated cultural biases.

Language and Cultural Humility

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In my last post, Cultural Humility, based on the book The Spirit Catches You and You Fall Down, I shared that cultural humility involves replacing judgment with curiosity, and begins with reflecting on our own silent assumptions. Another book, Illness as Metaphor, by Susan Sontag, made me realize the depth of my biases and the difficulty of rising above them. Sontag shows how the words we use imply assumptions; language powerfully yet invisibly shapes how we view the world.

Sontag describes how Tuberculosis (TB) was viewed prior to our understanding of its origin and treatment. TB, also known as Consumption, was seen as a disease of a passion. Individuals with TB were “consumed” with unrequited passion. Consumption was viewed as a feature of the romantic artistic temperament, and the gaunt appearance of the “consumptive” became the model for aristocratic looks.

Despite the advent of modern science, we continue to view illnesses through blinders. Consider, for instance, that we use military metaphors to guide our thinking about cancer. Cancer cells invade the body. Individuals fight cancer. Radiation therapy bombards cancer cells and chemotherapy targets malignant cells, though it creates collateral damage of harming healthy cells, leading to hair loss, vomiting, etc. Obituaries describe how a loved one finally died after a long battle with cancer. Indeed, the war on cancer began with Nixon signing the National Cancer Act of 1971 to conquer cancer. We may extend the military metaphor of cancer to all disease: Modern medicine fights illness.

Alternatively, we may view cancer through another blinder: the revenge of an injured environment on thoughtless humans who smoke, eat toxins (saccharin, nitrites, hormone fed poultry, etc.), pollute with pesticides, or overdose on radiation and microwave energy. These military and environmental metaphors can be useful, but they may also be damaging unless accompanied by the humility to understand that they are simply cultural assumptions embedded in language.

Consider the example of my mother. She was at peace after chemotherapy failed and wanted to be comfortable and with her family. A well intentioned busybody harangued her to continue the fight by eating apricot pits and by visualizing her good cells fighting the cancer cells. Implicit in the busybody’s world view was that cancer victims had control–if only they tried hard enough. Although modern medicine uses treatments which are more effective than fruit pits and imagery, the trap is the same. The military view of illness may engender subtle blame, shame and a sense of failure. Progressive illness must imply that we did not fight hard enough or that we developed the cancer in the first place because we were weak willed and smoked or ate the wrong things.

As I read Sontag’s book, I reflected that perhaps our most pervasive blinder relates to the language we use to describe life. The following words demonstrate examples of different views of life embedded in language:

Life is a struggle
Life is a gift
Life is a door to the next life
Life is a journey
Life is a stage
Life is a mystery
Lifee is box of chocolates (and you never know what you’re going to get)

In order to glimpse the world through the eyes of others, we must first see and remove our own blinders which may be deeply embedded in the words we use.

Please use comments below to describe how the words you use reflect silent assumptions and biases which may interfere with your interactions with those who have different assumptions.

Cultural Humility

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Reading The Spirit Catches You and You Fall Down by Anne Fadiman, I was struck with the realization that my deep-seated biases about health care could limit my open-mindedness unless I was aware of them.

Fadiman chronicles the story of young Lia Lee, her parents, and their struggle with language and cultural barriers. The Lees were among the 150,000 Hmong immigrants who fled Laos when the country fell to communist forces in 1975. Lia, their fourteenth child, was born in California in 1982. As with so many immigrants at that time, the Lees had little exposure to the Western world and believed deeply in a world of spirits and shamans. Lia was only 3 months old when she sustained her first seizure and was later diagnosed with epilepsy.

Fadiman describes the family’s reaction as follows:

When Lia was about three months old, her older sister  slammed the front door of the Lees’ apartment. A few moments later, Lia’s eyes rolled up, her arms jerked over her head and she fainted. The Lees had little doubt that what had happened. Despite the careful installation of Lia’s soul during the” hu plig” ceremony, the noise of the door had been so profoundly frightening that her soul had fled her body and become lost. They recognized the resulting symptoms as “quag dab peg”, which means, “the spirit catches you and you fall down”.

In traditional Hmong belief, qaug dab peg, like many illnesses, is viewed as spiritual in origin and is caused by the soul separating from the body. A traditional cure might entail visits from a shaman who would attempt to reunite body and soul. According to Fadiman, the Hmong regard epilepsy with ambivalence. On the one hand, it is seen as serious and potentially dangerous. On the other hand, it is considered a special honor and individuals with epilepsy often become a “txiv neeb”- a shaman healer.

Lia’s seizures progressed and by the time she was 4 years old she had been hospitalized 17 times and endured more than 100 clinic visits. Cultural misunderstandings between the care teams and the family created tragic consequences. The Lees did not always give Lia her medication because they often misunderstood the ever- changing directions and they did not want to completely interfere with quag dab peg. To encourage her soul’s return, her parents gave her herbs and amulets and she was sometimes visited by a Hmong shaman, who chanted, beat a gong and performed animal sacrifice.

Neal Ernst, her physician, saw his job as practicing good medicine and assumed the job of Lia’s parents was to comply with his advice. In his view, lack of compliance constituted child endangerment and Lia was forcefully separated from her parents and placed in foster care for a year. The separation triggered the mother to consider suicide and at one point Child Protective Services considered placing the entire family in a psychiatric hospital.

Lia was 4 1/2 years when she developed an overwhelming infection and sustained seizure. Her organs failed and she slipped into a permanent coma. She was sent home to die but through meticulous and loving attentiveness of her family she lived another 30 years in a persistent vegetative state.

Several years after Lia became comatose, her mother shared the following with Fadiman:

Your soul is like your shadow. Sometimes it just wanders off like a butterfly and that is when you are sad and that’s when you get sick, and if comes back to you, that is when you are happy and you are well again. Sometimes the soul goes away but the doctors don’t believe it. The doctors can fix some sicknesses that involved the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things. With Lia it was good to do a little medicine and a little “neeb”, but not too much medicine because the medicine cuts the neeb’s effect. If we did a little of each she didn’t get sick as much, but the doctors wouldn’t let us give just a little medicine because they didn’t understand about the soul.

As a young physician, I learned to view medicine through the “mind body dualism” articulated by the philosopher Rene Descartes – mind and body are separate. I also embrace the scientific model. In contrast, the Hmong see spirit, mind and body as one. Paradoxically, the scientific model using modern PET scanning images is consistent with the Hmong perspective that mind, body and spirit are inseparable. Despite this recent evidence, my western mind remains mired in the illusory divide between mind and body.

I invisibly roll my eyes when I hear people talk about the latest diet supplement, feng sui, or spiritual healers. As I read the words of Lia’s mother, I understand that the eye rolling reflects an attitude of judgment arising from blinders. Though I will always value skepticism based on the scientific model, I can replace judgment with curiosity. This represents the beginning of cultural humility.

The starting point of cultural humility is not for me to examine the patient’s belief system but rather for me to reflect on my own silent assumptions. Perhaps the outcome for Lia would have been different if her providers maintained a foundation of cultural humility.

In order to glimpse the world through the eyes of others we must first see and remove our own blinders. Please use comments below to describe how your biases and assumptions may interfere with interacting with individuals who do not share your way of seeing the world.

With Great Power Comes Great Responsiblity

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Ben Parker, uncle of Peter Parker (Spiderman), taught a young Spidey, “With great power comes great responsibility.”

George, taught me that lesson the first day of internship as my resident accompanied me through the Intensive Care Unit (ICU). Several months earlier, George, a perfectly healthy and vital young man, planned to donate a kidney to his brother, but now he lived on a ventilator in a deep coma. As part of the evaluation for kidney donation he underwent an Intravenous Pyelogram (IVP kidney XR). Unfortunately, George sustained a cardiac arrest from an allergic reaction to the IVP dye leaving him with severe and permanent brain damage from lack of oxygen.

Day after day I visited him as his family stood vigil at his bedside. Noticing movement when they touched him, his family clung to hope for his recovery. I knew movement demonstrated decerebrate posturing indicating severe brain damage with a grim prognosis.

Despite trying to distance myself from the tragedy, his status seared a lesson into my being. Before meeting George, I knew of the great potential of modern medicine to provide benefit (e.g. kidney transplant). On my first day of internship, George taught me the power of healthcare to harm as well as help. With the great power to harm comes the great responsibility to use the scientific method (evidence-based medicine) to assure that our interventions carry a greater likelihood of benefit than harm.

Of course, health care, like life, includes a “mystery bag”- forces like love, spirit, will and belief that cannot be readily studied with randomized, controlled trials. With great power comes great responsibility to use the scientific method with great humility that mysteries abound.

Please use comments below to describe your thoughts about using the scientific method while embracing the mysteries of life.