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As clinicians, how do we elevate our humanity to connect with the entire patient? How do we expand our knowledge base, move beyond our implicit biases and understand the critical role of culture?
Culture and compassion are critical aspects of psychiatric care, but how do we define culture? Why does it matter? And how do we integrate it into our care? If we strip away everything else, what I would really like to share with you is the power of being human. As clinicians, how do we elevate our humanity to connect with the entire patient? How do we expand our knowledge base, move beyond our implicit biases and understand the critical role of culture?
Some 30 years ago, when I was a resident at The University of Missouri-Columbia, I was called in for a consult. Back then, there was a small pizza shop across from our local mosque. A driver on his way to make a delivery noticed a man in the parking lot across the street standing in front of his car. When the driver returned, he saw the same man standing in the same spot, seemingly frozen in time. He left to make another delivery and decided to call for help when the man still hadn’t moved.
The man was incoherent and nearly catatonic when he was admitted to the inpatient unit. They were able to determine that he was Muslim and indicated so in his chart. The doctors examined him and decided on his course of treatment. The nurses made sure he was comfortable in his bed before going to check on their other patients. When they came back, they found him on the floor. Did he fall? Was he trying to test our patience? They put him back in his bed, but later they found him once again lying at an angle on the floor. They returned him to his bed over and over and each time they found him back on the floor. The treatment team went from being concerned to perplexed to frustrated. Why was this patient being defiant? Why was he disobeying orders from doctors and nurses? Why did he prefer the cold, hard floor to his soft hospital bed?
Exasperated and out of ideas, someone suggested they reach out to the Muslim resident. When I entered his hospital room, I found a scared, confused man who still wasn’t talking. I looked at him and looked around the room. I studied the area and the angle where he lay. It all made sense. This patient, who had no history of psychiatric hospitalizations, experienced his first psychotic episode and was afraid he was dying. And, as is customary in Muslim culture, if death came for him, he wanted to make sure he was facing Mecca.
He was not a difficult patient. He was being a Muslim patient. Instead of finding a way to support his wishes, such as moving the hospital bed a few inches this way or that, the medical personnel scolded him.
This scenario highlights the importance of understanding every aspect of the patient. Although it happened more than three decades ago, we continue to struggle with understanding the deep and rich cultural backgrounds of our patients and how they will better inform treatment modalities and interventions.
It is critical that we do, not only because it will make us better clinicians but because our changing demographics demand it. According to the Pew Research Center,1 when children in public schools went back to school this fall, more than 50% were from racial and ethnic minority groups. Compare that with 1995, when just 35% of students were minorities. By 2060, about one in five Americans are expected to be foreign born.2[PDF]
Disparity between physicians of racial and ethnic minorities and the populations they serve only compounds existing health disparities. We know that people of color are less likely to receive treatment for mental illness.3 We also know that a lack of cultural humility in treating psychiatric disorders can affect care. It can lead to misdiagnosis, which may result in improper treatment. All of this can prolong the suffering in our patients.
Culture is key
For the sake of this discussion, culture is a little bit of everything that makes us who we are-our beliefs, values, and traditions, as well as the language we speak, the music we listen to, and the food we eat. It is how we choose to worship-or not. It is the clothes we wear and how we wear them. Culture affects how we see the world; how much influence we give our families over the decisions we make in life; how we view health and illness; and how we approach love and happiness or loneliness and despair. It is all of this and more. And it touches virtually every aspect of our lives.
When I first came to the US from Egypt, the factors that influenced my culture included my religion, the Arabic that so easily rolled off my tongue, my devotion to my family-immediate and extended-and to my profession. Those values remain important to me. I learned quickly that it was not easy being a Muslim, an immigrant, and a woman who chose to wear a hijab and who spoke with an accent.
A person’s cultural identity isn’t static. It evolves with them. I learned to meld the culture I came with my new culture. I had my first avocado, enjoyed the tartness of a kiwi for the first time, and discovered my love of burritos. I stopped showing up late to things, even though back home it was culturally understood that a 5 PM dinner really meant 6. or 6:30. Or any time before dessert.
I fought against the stigma in my community to seek mental health care. If you had a heart problem, “wouldn’t you go to a cardiologist?”, I would ask my patients. A psychiatrist is no different. They silently begged to differ and do not always seek help.
When my patients come to me, I ask questions to try and understand who they are and how their culture affects them. Some people call this culturally competent care, but this is not a checklist of finite information to master. You cannot study hard then take a test in African-American culture and be declared culturally competent. Because Arab-Americans and Chinese-Americans and every other racial, ethnic, gender or religious group are not homogenous, each person, each experience is different and unique.
Cultural humility maybe a better term because it encompasses more of the essence of mental health care. It is about openness, about an ongoing and shared journey. We do not need to be experts in our patients’ culture, but we do need to respect their values and beliefs. We need to be cognizant of our own biases and how those may color our care.
There are other names for this type of care-culturally congruent, culturally informed, culturally sensitive, culturally confident-but the goal is the same. I am not as concerned about what we call it as I am about whether and how we implement it.
We are all busy with demands of back-to-back patients, mentoring our residents, completing scholarly work and emails. A mountain of emails appears every morning, even though we answered another pile just the night before. Of course, advocacy work on behalf of the children in this country, documented or undocumented, refugee or native-born, is also important. But compassion, like culture, cannot be an afterthought.
Compassion must be present in everything we do, in how we think about and talk to our patients, as well as how we explain a diagnosis to families worried about their children.
I remember how anxious I was when I first immigrated to the US. Would people accept me? What would the future look like for my children? Would I be able to continue my work as a doctor? There were so many unknowns.
I think about that when I think about our refugee patients. Their plight is so much worse for many who are escaping war and violence and famine. They were traumatized before, during and after their journeys here. In addition to acculturation stress, they worry about the family they left behind. They struggle with survivor guilt.
Ten years ago, I went from doctor to a patient. I went in for routine surgery that I scheduled over a long weekend so I wouldn’t have to miss work. There was a complication. I almost died. I slipped into a coma and was placed on a ventilator. No one knew if I would make it. And it seemed that complications kept coming, one after another. I was diagnosed with DIC, which as you all know is also referred to as Death Is Coming.
By what some would call God’s mercy, I survived. My doctors, family, and friends rallied around me. My children camped out in the waiting room. My husband never left my side. My doctors, who had been my colleagues before the surgery, didn’t give up on me.
Their compassion shone in the care they gave me and in the way they communicated with my family as I lay unconscious in the hospital bed. They updated my family constantly. They valued their input. They were patient when my family grew frustrated by the lack of progress in my condition. They were understanding when they walked into my room and found them praying.
That is compassionate care. And that is the care we should strive to give every patient. I realize my situation was different. I was a patient at the hospital where I headed an inpatient unit. I had known many of the doctors for years. Some of them I even trained.
What if we treated all our patients like they were our friends and colleagues? As if they were our very own children? I don’t think anyone would disagree that we need to embrace cultural humility and compassion, but the reality is always harder than the ideal.
A number of barriers keep us from providing proper care and keep the children and their families from seeking treatment. Language is an obvious one. Some consider getting an interpreter as one more task. Maybe a family member can translate, we think to ourselves, but it is critical we use trained professionals so we can communicate with our patients whose English is limited. This helps guard against misunderstandings and breaches of confidentiality. Stigma is another obstacle, a significant one in many communities of color.
A 10-year-old girl came in for depression. She had been diagnosed with cancer and the oncologist recognized the need for a psychiatrist. The girl’s family had recently immigrated from the Middle East. They viewed cancer as a death sentence.
They believed God would heal her, so they resisted their oncologist’s treatment plan. They didn’t even want the girl’s doctor to use the word cancer when he talked to their daughter. When the girl said God hated her for making her sick, her mother told her to repent.
The last thing they wanted was a psychiatrist to get involved.
The girl threatened to jump from the hospital window because she worried the medication would poison her. She was irritable, angry, and unable to concentrate. She had nightmares and did not want to play video games or see her friends. Her parents kept her home from school for a month because she was sick.
They did this all because they loved her. They thought they were doing the best thing for her.
It took time to earn their trust. I emphasized confidentiality and acknowledged their fear of a mental health diagnosis. I underscored the biological aspects of depression, pointing out that it was not a personal shortcoming or something that she could just switch off. I clarified her mother’s thought processes and practiced cognitive restructuring. I stayed in touch with the family as she transitioned to outpatient.
She is still in treatment for cancer and, after getting family buy-in, she took her medication consistently. Her quality of life has improved. She is interacting with her friends again. She met with a school counselor and went back to school.
Many more barriers, such as economic, geographic, and cultural beliefs, may impede our care. Many families come in distrustful of the health care system or at the very least confused by it. They may wonder how a psychiatrist could ever relate to what they are going through.
This is where the value of being human comes in. I may have not grown up going to Friday night football games, but the joy of a parent seeing his child succeed is universal, as is the pain of seeing them suffer. The details, the perceptions, the manifestations are unique. Understanding that is the first step of cultural humility. No group is identical. I can’t assume that just because I worked with one Native American patient, I know how to work with all Native American patients.
The refugee experience is different from the experience of a child who was separated from her father at the border. Their experiences are markedly different from a second-generation Latino American who works as a lawyer and eats avocado toast for breakfast.
Last year, I was honored to work with a talented group to develop an educational video that focused on refugee mental health care. The primary goal was to decrease the stigma around seeking care. Stigma is stubborn and destructive, and we have to chip away at it until we shatter it in every community. To my delight, the video was translated into six languages* and the response from the community has been strong. The Table lists some components of cultural care for clinicians.
I am working with my colleagues to revise the American Academy of Child and Adolescent Psychiatry (AACAP) cultural curriculum to help residents and fellows understand the value of culture, the strengths it can offer, and the risks it may carry.4 AACAP’s Practice Parameters for Cultural Competence should be a part of every child psychiatrist’s toolbox.5[PDF] The DSM-IV Outline for Cultural Formulation and the Cultural Formulation Interview in the DSM-5 will help guide us as we prioritize culture and compassion in mental health care.
Remember the man standing at his car across from the pizza shop? Remember how frustrated his treatment team was when they found him on the floor time and time again? We can treat the whole patient if we ask the right questions.
*Video in other languages
Dr Adam is Clinical Professor of Psychiatry, University of Missouri- Columbia, Columbia, MO.
1. Krogstad JM. A view of the nation's future through kindergarten demographics. Pew Research. July 31, 2019. https://www.pewresearch.org/fact-tank/2019/07/31/kindergarten-demographics-in-us. Accessed February 5, 2020./
2. Colby SL, Ortman JM. Projections of the Size and Composition of the US Population: 2014 to 2060. Population Estimates and Projections. Current Population Reports. P25-1143. US Census Bureau. 2015. https://www.census.gov/content/dam/Census/library/publications/2015/demo/p25-1143.pdf. Accessed February 5, 2020.
3. Bailey RK. Working with African American/Black Patients. American Psychiatric Association. https://www.psychiatry.org/psychiatrists/cultural-competency/education/best-practice-highlights/best-practice-highlights-for-working-with-african-american-patients. Accessed February 5, 2020.
4. Al-Mateen CS, Mian A, Pumariega A, et al. Diversity and Cultural Competency Curriculum for Child and Adolescent Psychiatry Training. American Academy of Child and Adolescent Psychiatry. 2011. https://www.aacap.org/AACAP/Resources_for_Primary_Care/Diversity_and_Cultural_Competency_Curriculum/Home.aspx. Accessed February 5, 2020.
5. American Academy of Child and Adolescent Psychiatry. Practice Parameter for Cultural Competence in Child and Adolescent Psychiatric Practice. 2013. https://www.aacap.org/App_Themes/AACAP/Docs/practice_parameters/Cultural_Competence_Web.pdf. Accessed February 5, 2020.