Monday, 12 November 2012
Eight Questions That Can Heal
Dr. Arthur Kleinman is a psychiatrist and anthropologist who heads the Department of Social Medicine at Harvard University. In my last blog post, I talked about the heartbreaking story of Lia Lee in "The Spirit Catches You and You Fall Down" by Anne Fadiman. Lia's intractable seizure disorder combined with the cultural barriers between Lia's family and the medical community that treated her yielded tragic results. Dr. Kleinman's opinions on Lia's case appear near the end of the book. Besides being an expert on the Hmong people (Lia's culture), he is a major contributor to cross-cultural understanding in cases where western medicine clashes head-on with new arrivals in North America who present themselves at the Emergency Room.
Kleinman devised eight simple questions for non-English speaking patients and their families. This is how Lia's family answered them:
1) What do you call the problem?
Qaug dab peg. That means the spirit catches you and fall down.
2) What do you think has caused the problem?
3) Why do you think it started when it did?
Lia's sister Yer slammed the door and Lia's soul was frightened out of her body.
4) What do you think the sickness does? How does it work?
It makes Lia shake and fall down. It works because a spirit called a dab is catching her.
5) How severe is the sickness? Will it have a long or short course?
Why are you asking us these questions? If you are a good doctor, you should know the answers yourself.
6) What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment?
You should give Lia the medicine to take for a week but no longer. After she is well, she should stop taking the medicine. You should not treat her by taking her blood or the fluid from her backbone. Lia should also be treated at home with our Hmong medicines and by sacrificing pigs and chickens. We hope Lia will be healthy, but we are not sure we want her to stop shaking forever because it makes her noble in our culture, and when she grows up she might become a shaman.
7) What are the chief problems the sickness has caused?
It has made us sad to see Lia hurt, and it has made us angry at Yer.
8) What do you fear most about the sickness?
That Lia's soul will never return. (Pages 260-1)
The author Anne Fadiman presented Dr. Kleinman with the Lee family's responses to his eight questions and this what she wrote:
From his vantage point, a physician could encounter no more captivating a patient than Lia, no finer a set of parents than the Lees. Then I told him what had happened later - the Lees' noncompliance with Lia's anti-convulsant regimen, the foster home, the neurological catastrophe - and asked him if he had any retroactive suggestions for her pediatricians.
"I have three," he said briskly. "First, get rid of the term 'compliance.' It's a lousy term. It implies moral hegemony. You don't want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist, who can help you negotiate. Remember that a stance of mediation, like a divorce proceeding, requires compromise on both sides. Decide what's critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can't see that your own culture has its own set of interests, emotions and biases, how can you expect to deal successfully with someone else's culture?" (Pg. 261)
It would not be an understatement to say that I was thrilled when I read these eight questions. I believe that most people who are faced with serious illness, together with their families, struggle to comprehend the culture and language of biomedicine. These simple eight questions have the potential of creating an even playing field of mutual understanding and respect in situations where patients are faced with choosing complicated treatments or invasive procedures.
In 2004, my son Nicholas was suffering nearly constant pain from a series of failed hip surgeries and nerve blocks that resulted in increased pain due to nerve damage. Nick's doctors were all highly skilled, totally dedicated professionals who struggled to help us recover hope for a pain-free future. Now, looking at Kleinman's eight questions, I know that if I had answered them then and showed them to our doctors, they would have answered the same way that Lia's pediatricians did when they saw the Lee's answers: "They thought WHAT????" When our doctor told us that nerve blocks 'killed the nerves', I understood that Nick would have no sensation and certainly no pain. After the nerve blocks, when my boy still flinched upon movement, I believed the nerve blocks had failed and needed to be re-done. I know now that nerve blocks only partially numb sensation. When another doctor said that Nicholas (aged 16) needed to 'adjust his lifestyle' and lie down most of the day in order to be comfortable, I could not accept that his active lifestyle could be over. I believed it was my job to defend his chances of an active future. There were many misunderstandings and all of them caused our family great distress.
I'm going to write to Dr. Kleinman to ask him whether any scholar has investigated using his eight questions with non-immigrant patients. Think of it! These eight questions could be used to share perceptions between an elderly parent, family and professional care-home staff. They could be used in cases where a young adult has just been diagnosed with schizophrenia and misconceptions about the causes of mental illness are revealed.
I am inspired by these eight questions and I am determined to find out more about how they can assist families like mine navigate the culture and language of biomedicine. I'll keep you posted!