Illness Experiences and Culture PDF

10/5/2023 Illness Experiences and Culture SOC 162 10/5/2023 1 The Spirit Catches You and You Fall Down • Background and updates • ‘“In some sense, I was trying to provide a way of controlling her seizures with Western methods and Western medicines,” said Dr. Neil Ernst, who with his wife, Dr. Peg...

10/5/2023 Illness Experiences and Culture SOC 162 10/5/2023 1 The Spirit Catches You and You Fall Down • Background and updates • ‘“In some sense, I was trying to provide a way of controlling her seizures with Western methods and Western medicines,” said Dr. Neil Ernst, who with his wife, Dr. Peggy Philp, was one of the pediatricians who treated Lia early on. “And in some sense, the Lees were giving up control of their child to a system that they didn’t understand.” That cultural divide — despite the best intentions of both sides, Ms. Fadiman wrote — may have brought about Lia’s condition, a consequence of a catastrophic seizure when she was 4.” (NYT 2012/09/15). 2 1 10/5/2023 3 Lia’s Legacy • Impact on American medical community: • A required reading for medical students, medical sociologists, & medical anthropologists. • Prompting doctors to: • Ask: Is disease the same as illness? • Emphasize: healing power of family, tradition, & culture. 4 2 10/5/2023 Disease vs Illness (Review) • Disease: A pathological entity. (Biological condition) • Illness: Effects of the disease on patient’s entire way of life. (social meanings of the condition) 5 Lia’s doctors understood her disease, but not her illness. • Why? • Language and cultural barriers. • Mutual mistrust: • Doctors commented on Hmong patients: • “They just couldn’t f*** wait!” (pp. 178-179); • “It’s absolutely heaven for these people [to live in the US].” (p. 235). • Hmong patients believed that the doctors were aggressive and authoritarian. • Example: Doctors reported Lia’s parents reported to social services. • Why did Lia’s doctors do this? • How did the incidence affect Lia’s care? 6 3 10/5/2023 Patients’ Explanatory Models • Patients have their own explanatory models, which can be elicited by 8 questions (developed by Arthur Kleinman). • Fadiman thought the Lee’s might have answered these questions as follows: I . What do you call the problem? • Qaug dab peg. That means the spirit catches you and you fall down. 2. What do you think has caused the problem ? • Soul loss. 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. 7 5. How severe is the sickness? Will it have a short or long course? • Why are you asking us those 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 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. [pp. 260-261] 8 4 10/5/2023 Doctors’ Blind Spots • Dr. Hutchison: “Lia's brain was destroyed by septic shock, which was caused by the Pseudomonas aeruginosa bacillus in her blood. I don't know how Lia got it and I will never know…. The septic shock caused the seizures, not the other way around…. If Lia had not had seizures, she would have presented in a coma and shock, and the outcome would probably have been the same, except that her problem might have been more easily recognized….” • “Did her parents’ past noncompliance have anything to do with it?” • “Absolutely nothing. The only influence that medications could have had is that the Depakene we prescribed might have compromised her immune system and made her more susceptible to the Pseudomonas…. I still believe Depakene was the drug of choice, and I would prescribe it again. But, in fact, if the family was giving her the Depakene as instructed, it is conceivable that by following our instructions, they set her up for septic shock…. Tell …MCMC that the family didn’t do this to the kid. We did.” • “If it had been a brand-new kid walking off the street, … Neil would have done a septic workup and he would have caught it. But this was Lia. No one at MCMC would have noticed anything but her seizures. Lia was her seizures.” [pp. 254-6] 9 Achieving Cultural Competence • Talk nicely so that patients will do what I want them to do? Or, • Meaningful give-and-take to find common ground? 10 5 10/5/2023 1. Kleinman’s Suggestions • “First, get rid of the term ‘compliance’…. It implies moral hegemony.” • “Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community or a medical anthropologist, who can help you negotiate. Remember that a stance of mediation… requires compromise on both sides.” • “Third, yon 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?” (p. 261) 11 Ways for Lia’s parents and doctors to find common grounds? Doctors could have compromised on…. • Re: spiritual explanations? • Re: emotional outburst? • Re: herbal medicine or meditation? Then, parents could have been talked into doing… •? •? •? 12 6 10/5/2023 2. New Model of Doctor-Patient Communication • Moving toward seeing doctor-patient communication in terms of: co-constructing a “clinical narrative:” • A clinical narrative is a coherent story about the disease, its treatment, and how the patient is experiencing both: • The “story” links the past and the present to potential futures; • Plotting potential courses of action; • Though doctors take the lead, patients must also contribute. • The clinical narratives must be tailored to different audiences. • Common themes, but presented differently. • It must be ‘consumable’ for patients. • It reminds us that clinical narratives CAN contain biases or omissions. • [Lia’s case is the exact opposite.] 13 Discussion • How would you construct a “clinical narrative” about high blood pressure to Lia’s parents? • Connecting past, present, and future: “Your blood flowed in your body like little rivers. If you want to keep the “river” flowing smoothly, you need to keep the “riverbed” clear. Eating too much XYZ is slowly making the “river” narrower. You are still OK now. But to make sure you are still OK in the future, you need to exercise and reduce the amount of salt in your food.” • Doctor takes the lead, but patients also contribute. How should the doctor encourage the patient to contribute to this “story”? • Rule of thumb: Is the story medically true and also “consumable” by these patients? 14 7 10/5/2023 3. Cultural Brokerage • Cultural brokers provide connections between different “sense-making schemas.” • The framework with which people organize information, make sense of the world, understand causes & effects, etc. • E.g., Neil and Peggy’s sense-making schema: biomedicine and patient compliance. • Lia’s parents’ sense-making schema: mind-body connections and refugee struggles to retain dignity and some autonomy. • A cultural broker helps connect the two sense-making schemas. 15 • In Chapter 8, the author talks about how Sukey Waller and herself, both non-Hmong and did not speak the language, managed to earn the trust of the Hmong and learned to understand their perspectives to some extent. • What did they do to succeed at their cultural brokerage work? 16 8 10/5/2023 Recap: Key Concepts • Illness vs. disease; • Cultures of biomedicine; • Patients’ explanatory models; • Co-constructing clinical narratives; • Cultural brokerage. 17 How to think about this book today? • A lot has changed; but something hasn’t. • American medicine has become more culturally competent, but it’s still work-in-progress; • Hmong has become more assimilated. They should not be viewed through cultural stereotypes, but there still exist cultural differences that need to be respected. • In Fadima’s words: https://www.albany.edu/writersinst/webpages4/archives/fadiman_anne16.html#.YdtqPGhKg2 w 18 9 10/5/2023 Current Practices: From HHS “Think Cultural Health” • Examples of successful “cultural brokerage?” [e.g., connecting religious and biomedical frameworks] • Examples of doctors and patients constructing separate, conflicting clinical narratives? [e.g., doctor and patient did not share the same “story” of what’s going on, and what’s to do done.] • What do you think Carlos might have done after being dismissed by Dr. Walker without receiving a new prescription? • Dr. Walker said he wanted to talk to Carlos again to figure out what’s going on. What questions should he be asking, to better understand Carlos’s story, esp. how he connects the past, present, and possible course of treatment in the future? 19 10