Category Archives: Health

Honesty and truth telling with Chinese characteristics

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Do you want your doctor to tell you everything, right away, as soon as she knows something bad is coming at you?

Take it another step:  who do you want the doctor to tell first: you, or your family?

In the US and other places like northern Europe, the answer to the former is umm maybe now but for sure eventually, and the second one is not even a question with HIPAA laws and all the other ways we strive to protect our privacy.

My experience here in China has been vastly different.

From our early days here (back in the Dark Ages of 2009) we quickly heard about how often serious diagnoses are not disclosed to the patient, but to the other relatives, and they decide when and if to tell the patient.

Of course I was aghast and fumed about patient autonomy, rights, lying to the patient, and more.

There are many questions surrounding this that I can’t begin to answer, beginning with how..and why…and what on earth…and strong adjectives that I might quickly jump to using like insufferable and paternalistic.

However.

A friend was telling me about her father’s recent diagnosis with advanced lung cancer, and how she and her sister want to tell him but their mother does not.

The mother has declined chemotherapy for him and they are telling him that his illness cannot be cured but he should eat healthy foods and take good care of his health.

Every weekend the three adult kids come home with their families and have a good family time together.  The dad says he didn’t have it so good until he got sick.

She is pretty sure he suspects.

My friend says they will go along with their mother because she will be around a lot longer and they don’t want to upset her too much since they have to deal with her.

As we talked and she described their family’s situation I had a sudden a-ha moment.

In the Chinese culture parents take care of children when they are young, and the expectation  is that the children will take care of the parents when they are old and/or sick.

In addition, major decisions about a young person’s life-college, career, spouse-are often all made by the senior decision makers in the family.  When they age, the roles are flipped to some degree.

In the US a big deal is made about living wills, health care power of attorneys, DNR statuses.

We entrust our decision making to our designated loved ones only at the very end of the journey when we can’t make the decision ourselves.

I wonder if the same choice is made but much earlier in the process here-at the beginning of the diagnosis, not at the end of life.

There is an element of trust that seems very deep-trusting that your spouse and children will do their utmost to decide what is best but not only for you but for the family as a whole.

I may not necessarily agree with that method in every regard, but that doesn’t mean it is less valid than my western perspective.

Can family members be loving, honest and truthful without the element of naked and complete disclosure that we value so much in the west?

Can doctors work within this system and still make sure that the needs of the actual patient are met appropriately?

These are some of the bigger cross-cultural issues we are grappling with as we, a group of western-trained doctors, attempt to teach and mentor a  group of young Chinese physicans.

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[random couple in park]

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Running on THE wall

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Running on THE wall

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The one you can see from outer space–yep, we ran on it!

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2550 steps, 3.5 km, as part of a half (or full, if you’re insane) marathon.
Along with about 2500 other people.

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Race day started with a 3 am wake up call, then the 3:30 am bus ride out to the access point on the Great Wall.

Thanks Coach K for your wealth of tips…I brought my coffee travel mug and sipped it at the right time to load up.

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We arrived at Yin-Yang Square and warmed up with the masses, visited the portapotties set up (with timers on the door to shame you into being quick) and arranged our gear: headband, electrolyte gels, and the all important Norwegian Flag.

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It was incidentally Norway’s 200th anniversary of Constitution Day this same day.

Thanks to the flag I met a dozen or so fellow Norwegians milling about, enjoying the day in a most unique way.

Even some Danes cheered me on.

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The race was in 5 start waves ten minutes apart, and we settled ourselves comfortably at the back of Wave 2 after watching the professionals take off in the first wave.

One of our medical colleagues was running as well so we cheered him on.

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The course was first 5k uphill on a little road leading to the main entrance to the Wall, then about 200 steps hiking up to the Wall itself, and then off we ran.

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Somehow my muscle memory kicked in and I had no difficulties with the steps, and left MeiMei behind.

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For a bit.

As we passed the highest point on the Wall and began the uneven descent, suddenly a jet-propelled yellow fury swept by me and I never saw her again until the finish line.

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After the Wall, the course led out through the town, down country roads and into a typical village with kids giving us high 5’s and handing out water bottles.

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We went down alleys, over bridges, up a steep trail through a fruit orchard, then looped back towards the start/finish area.

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A tent over a ditch was set up as a porta-potty, but I had already found an outhouse by a little restaurant earlier.

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Keep on running, see people from later start waves making their way towards the village.

Eat a banana and more gel to make it the last 4-5k.

The full-marathon runners had a longer loop, and topped off their marathon with another reverse trek back up the Wall to see if they had what it took at the end.

The guy who got 2nd place for the full marathon was on our bus driving back to Beijing, and said it’s the first time he seriously thought he wouldn’t make it to the finish line.

As for me, 3 hrs and 22 minutes after the gun, I crossed the finish line.

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It was my personal best, since it’s my first half marathon ever.

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And fantastic, awesome, exhilarating, every moment of the way.

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On Seeing

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ZZ was blind and the orphanage asked if we could find a foster home for him back in January.

He also could not roll over, sit, stand or do anything else a 2 year old was supposed to do.

They thought he had cerebral palsy, like most other kids who grow up untouched and unstimulated in orphanages, with resultant developmental delay.

No workup had been done on him, to our knowledge.

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We found out he had congenital cataracts and indeed was somewhat responding to light, so the doctors deemed him a candidate for eye surgery.

Then we found a heart murmur, with a resultant heart defect, and they wanted to fix that first, and then wait a period of time before fixing his eyes.

We’ve also found out he has no hearing, but is a candidate for cochlear implant surgery.

In the meantime, he has been receiving lots of one on one attention, and daily exercises to stimulate development.

He has progressed to standing, pushing a toy to walk, and reaching out to play with things on his own!

I am fairly convinced he does not have cerebral palsy at all, but has significant delays due to the combined visual and hearing impairment, plus the overall lack of environmental stimulation due to institutional care.

So finally in October he had his eye surgery, one eye each time, one week apart.

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Inpatient the whole time (10+ days including the pre-op and post-op mandatory hospital stay here), with around the clock babysitting provided by his foster mother’s church group.

Now he is getting visual stimulation therapy, which includes holding a blinking light in front of his eyes to train him to focus on it, and stimulate that dormant area of his brain.

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So far, he is liking it!
He’s even trying out new positions, just for show!

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Hidden Treasures

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Our medical team had a new type of outreach this week.
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We had some extra medical visitors in town, including a dear pediatric colleague who lived here for 2 years and there was an opportunity to go to a smaller city about 3 hours away to a special needs school.
This school was absolutely phenomenal.
We saw a total of about 60 patients, with 5 residents/recent graduates seeing the patients and N and I precepting/teaching.
In addition, the children seen that day also all received fluoride varnish treatments and some basic oral hygiene training from our team.

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I was struck by the parents’ hunger for information on how to help their kids learn and thrive.

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Some have received a diagnosis and have no idea what it means.
Others have no diagnosis, just are told their child is “delayed.”
I asked many of the moms and grandmas whether they felt like having their child at this school had made a difference.
The answer was an overwhelming YES.
Countless times we heard that prior to coming here, the children were unable to walk, or talk, or do much for themselves.
Now, 6 or 12 months later, they can!

This boy was being hauled up to the 4th floor by his grandmother every day, her lifting him under his arms.
And he’s not a tiny kid.
In the past months, he can actually climb all the stairs by himself, holding the handrail.
They were both beaming with pleasure, and I had tears in my eyes.

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I was blown away by whatever the teachers and therapists are doing.
Perhaps not all according to our ideal US standards–they are eager to have colleagues come and do more teacher training and therapy training–but they are certainly already making a huge impact on these families.

I was reminded of the fact that 85% of people living with disabilities are in the developing world.
And 98% of children with disabilities have no access to education worldwide.

(for more, read Unicef’s report on disabilities here)

I have certainly found limitations to education here in our city–for one, pretty much anybody with a disability cannot attend the regular school.
Each district has a public special needs school but there are reportedly tuition fees that many families cannot afford, even if distance is not an issue.
But I am still learning about that issue, so cannot wax too eloquent yet.

In any case, this particular school is a bright spot in their city, and we are looking forward to our next trip and planning more targeted educational and medical interventions.

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Morning Run

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With jet lag you can get a lot of stuff done by 5 am.

So last week I tried to take advantage and get in some early runs before my natural tendency to sleep rules and I get more settled….

A few notes on the pictures:

The sky was remarkably blue, due to some recent torrential rains the past few days.

The roads were remarkably unpopulated at 5 am.

Demolition zone–on every other block.

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The nearly complete rehabbed government square.  Can you spot the defective computerized image on the pillars?

And the next day I ran the images were all of somebody’s generic HP desktop.

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The construction workers were filing in underneath to start work on this impressive structure.  I don’t see any signs about “Injury-free days” around here.

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The vendors selling things to people about to get on long distance buses to recreation areas outside the city were busy.

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Sidewalk art.

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Wedding processions start early.  Note the flower-decorated car at the front of the line. The blue-and-white building is the entrance to the Muslim meat market, where you can get best-quality cuts of beef and lamb.

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I thought this construction wall advert was cute.

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In contrast, I (try not to) daydream about my trail runs in the northern Minnesota Boundary Waters about 6 weeks ago….

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Grilling: Food and More

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DSCN0215I was determined to eat as many varieties of grilled foods as possible while in the US this summer.

Due to our lack of ventilated porch on the 14th floor over there, rules about grilling down in the courtyard and parks, etc, we have missed the grill while overseas.

The first week found us dining on grilled salmon, marinated chicken and roasted veggies one day, and portabellas and brats another time.

And of course, burgers, dogs, steaks, sweet corn, and other saliva-inducing all-American treats.

There was somewhat of a re-entry learning curve, like the fire from dripping oil that completely charred the first batch of ‘bellas.

We travel back to China next week, and will try not to miss these things.

Traveling back and forth is kind of like pulling a curtain back or closing one door and entering a different room.

If you try to keep the door open and live like a Westerner, expecting western foods and customs and all the rest when in Asia, you will be disappointed.

Such as, there is no Mexican food in our city unless you make it all from scratch yourself with substituted ingredients.

Passable Italian food, but forego any steak-based entree anywhere.

However, if you focus on enjoying the food Chinese people do well in China, you will be in culinary paradise–not only great authentic Chinese cuisine, but also their Korean and Japanese neighbors serve up some mean grub locally.

Hmmmm….could also apply to other aspects of cross-cultural living.

When I get back to China I will introduce you to our new neighborhood’s “Eat Street.”

In the meantime, live in the present!

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ICU

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I still have so much to learn about life here.

I heard about a baby, only a few months old, who was hospitalized recently for a serious bacterial infection that has destroyed a large portion of the skin on her face.

Her father, 27,  earns about $300 a month as a driver.

Her mother, 25, loves her little darling with all her heart.

When the doctors told them, “Just let her die, you’ve only had her for 4 months; she will hate you when she grows up for letting her live so disfigured” she insisted that they do everything to save her.

I visit them at the hospital with our mutual acquaintance.

The parents are living, 24 hours a day, on a mat and two small stools near the PICU entrance.
The grandparents take turns bringing in food.

Any phone call from the doctor is met with trepidation.

They have seen her once since her hospitalization over 2 weeks ago, passing by in the hall on her way to surgery a day earlier.

As I clutch this woman’s hand, tears are streaming down her face as she pours out her story–nightmare, really.

We all shed tears together, 3 mothers.

They ask me questions.

Most I cannot answer.

Only God can give answers, and sometimes we have to wait.

Wait.

These Chinese parents with sick children have a tremendous time waiting.

As I leave the young couple I skirt around thermoses, potato chip bags and more bundles of humanity camped out lining both sides of the hallway, each with their own story of tragedy and despair.

I pass through the huge pediatric IV infusion area filled to overflowing with blanketed bundles, tantruming toddlers and morose mothers staring blankly forward.

My heart breaks again.

And I go home, thankful for my children but still the heaviness, lingering.