“He was yelling at me! He said I could not tell her she had cancer! No one here ever tells them!”
We were standing just outside the gate of the National Referral Hospital in Thimphu, Bhutan. I looked up at the oncologist, squinting into the afternoon sun.
That afternoon he had been working with patients, as usual. He was just about to tell his patient that she had cancer and that it was a terminal diagnosis. Then the patient’s son pulled him out of the room and insisted that she not be told.
The oncology nurse beside me nodded and said, “It was the same in the Ukraine, but I think they are changing now, slowly.” She had served in the Peace Corps two decades earlier.
I had heard this story before. Someone is diagnosed with cancer. (It’s always terminal here. No one is ever diagnosed in time.) The patient is admitted, and the family comes along. The head of the family, probably a middle-aged man, is the person who receives medical information, makes decisions, and determines what the patient will be told.
The patient is not told that he has cancer. He is not told that his status is terminal. If he needs treatment, he is told that it’s to prevent cancer, not to treat it.
Hearing this story, I felt the urgency of judgment.
Don’t they know about confidentiality and informed consent and patient rights and self-determination and and and … ETHICS!
I wonder if something functional is going on here? The nurse said it used to be like this in the Ukraine. Does that mean progress or Westernization?
I went home and did a lot of reading online. Turns out this is incredibly common in Asia, Latin America, and among Native Americans.
What’s going on here?
Paternalism vs. Self-determination
In non-Western cultures, the family and the medical providers approach care from a paternalistic framework. Doctors and elders are seen as wise. Their status and successful life experiences prove this. They know best, and they have the decision making power.
Contrast this to a Western mindset where the individual is king. The patient has to consent to family member’s involvement, and removing decision-making power is a complicated legal process. Tools like the advanced directive aim to extend the individual’s decision-making power as long as possible.
Compassionate Duty vs. Emotional Support
In Bhutan, I’ve noticed that family members show their love and support for each other through behavioral support.
The most obvious example is the use of attendants. One family member will stay with the ill person day and night, attending to every need. (Sometimes more than one person fills this role or family members take turns.) In the hospital, the attendant may share a bed with the patient or sleep next to them on the floor. Another role that a family member might fill is decision-maker and protector.
Even when providing this behavioral support, family member members might never discuss emotions or display an emotional reaction.
In Western cultures, family members tend towards verbal and emotional support. When someone is very sick, there is an expectation that you show support and concern verbally and that you somehow communicate a distressed and saddened emotional state.
Just look at movies like Steele Magnolias or Terms of Endearment. Characters who are stoic ultimately have an intensely emotional scene, and we love them for it.
Emotional Restriction vs. Messy Authenticity
I’ve noticed that the Bhutanese are very emotionally restricted when in distress. It’s common to see a flattening of affect with mental health patients. Walking around the medical wards in the hospital, I have never seen anyone crying.
This may have to do with saving face and the primacy of the family. People are defined as family members, and they have a duty to one another. Showing emotional distress or unhappiness is a reflection on whether your family members have fulfilled their duties.
Contrast this to the West where being “the black sheep of the family” is often a badge of honor. Separation from the family is seen as a healthy and normative developmental stage. Children are taught to take responsibility for their actions, and parents are encouraged to let children make mistakes.
Westerns also value the messy authentic individual. It’s considered healthy to let go of how others perceive you and let it all hang out. Sort of like this guy.
McCabe, M. et. al. (2010, January 21). When the Family Requests Withholding the Diagnosis: Who Owns the Truth? [journal article]. Retrieved from http://jop.ascopubs.org/content/6/2/94.full
Benowitz, S. (1999). To Tell the Truth: A Cancer Diagnosis in Other Cultures Is Often a Family Affair [journal article]. Retrieved from http://jnci.oxfordjournals.org/content/91/22/1918.full
Prager, K. (2009, November 24). Informing the Patient: “The Whole Truth and Nothing but the Truth” [pdf]. Retrieved from http://www.cumc.columbia.edu/dept/bec/pdf/Whole_Truth_Nothing_but_Truth.pdf
Seabright, H.R. et. al. (2005, February 1). Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians [journal article]. Retrieved from http://www.aafp.org/afp/2005/0201/p515.html