Reflections in a Head Mirror

Hospitals are a little like the beach. The next wave comes in, and the footprints of your pain and suffering, your delivery and recovery, are obliterated; the sheets are changed.
-Anna Quindlan, “One True Thing”  


When a patient spends more than a few days in the hospital, the room often takes on his or her personality. For a while, the patient and family have a space — four walls, a bathroom, a window — that becomes their own. Frequently, I feel like a visitor as I enter such a room. When I walk the halls, my memory stirs as I link specific rooms with particular patients and their stories.     

When I was first in practice, I was asked to see a woman who had been hospitalized for several weeks. She was holding her own but, in those days before hospice, she had nowhere else to go. As I opened the door, my nose filled with the aroma of flowers. There was soft music playing, The bedraggled bulletin board was covered with family photos and get well cards. A “We Miss You!” banner hung from the ceiling. Board games were stacked on the ledge.  

The place felt like someone’s home or maybe their summer cottage. Family and friends had taken a few square feet of hospital and planted their own personal healing garden.  

“The flowers are beautiful!” I commented, approaching the bed rail.  

“It’s like a funeral parlor, don’t you think?” she responded. I looked to see if she was serious. Her eyes gave her away.  

“A very classy funeral parlor,” I agreed.  

Over the next few weeks, she deteriorated. Her family kept vigil, personalizing and rearranging the photos, cards and mementos. Every few days, I looked to see what was new.  

One day, I knocked on the door and peeked in. The flower fragrance had dissipated and the room was empty. The bed was raised to its highest setting and the sheets were crisply made. I blinked. The personality had been swept away. 

The cocoon had opened. She was gone.  

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Thanks to Courtney S. for the quote from Anna Quindlan.

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The following is feedback received for this blog: Thanks for painting a beautiful picture of a person not only a patient. - Kerry http://clubsammichcafe.spaces.live.com/

Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.
-Atul Gawande, MD  


In response to my last blog entry, a colleague who returned recently from six months working in hospitals and clinics in Rwanda and Cameroon asked for resources on “different perspectives on the current politics and changes in health-care.” I am a novice in policy; every time I read a new editorial or column that proposes how to best pay for health care yet keep the costs under control, I am swayed. It seems that many commentators say something that seems to make sense to me.  

But, what is the heart of the matter? What fundamentally needs to change in order to reform health care?

In a recent article in the The New Yorker, surgeon-writer Atul Gawande, MD helped me understand the issues in a fresh way. Here is an analogy that he uses to describe the current healthcare situation in much of the country:    


"Providing health care is like building a house. The task requires experts, expensive equipment and materials, and a huge amount of coordination. Imagine that, instead of paying a contractor to pull a team together and keep them on track, you paid an electrician for every outlet he recommends, a plumber for every faucet, and a carpenter for every cabinet. Would you be surprised if you got a house with a thousand outlets, faucets, and cabinets, at three times the cost you expected, and the whole thing fell apart a couple of years later? Getting the country's best electrician on the job (he trained at Harvard, somebody tells you) isn't going to solve this problem."  


So what does Dr. Gawande seem to suggest?

First, we need to develop a team approach to medical care. He details the differences between market-driven, free-wheeling healthcare communities like McAllen, Texas, integrated systems like the Mayo Clinic and smaller, partially integrated communities like Grand Junction, Colo. Team care is less expensive and built around evidence.  

Second, we need to understand culturally that more health care does not translate to better health care. Some communities seem to value quality medical care and some seem to reward "quantity" care — more tests, more bills, more frequent exams, more procedures. The people who control the number and types of tests (the doctors) don't usually see the impact of their prescribing patterns on the bigger picture. For example, McAllen, Texas, has no better and, in many ways, even worse outcomes than much-lower cost towns. Interestingly, the McAllen physicians with whom Dr. Gawande spoke had no idea that that their community’s health care was extraordinarily expensive nor did the physicians know why that was the case.    

Third, in many places, no one, neither the government, the insurers, the physicians, nor the patients has any role in overseeing the entire system of care for the community of patients. As he says, "Someone has to be accountable for the totality of care. Otherwise, you get a system that has no brakes."    

Finally, and potentially most important, Dr. Gawande shows us that HOW we pay for medical care will ultimately be less important than having a "culture of medicine" that is, above all, consistently ethical. If every test or procedure directly benefits the person who orders it, there is too much temptation.  


I still don’t know much about policy, but Dr. Gawande’s house-building analogy makes sense to me. I have seen medical care that concentrates on the fancy decorative embellishments and ignores the foundation. We have a lot of work ahead of us.

Common sense ain't common.
-Will Rogers


I have been sorting out family memorabilia lately. Here is an excerpt from my great-grandfather’s obituary from March 7, 1929:  


“Frank Briggle, 63 years old and a widely known farmer, died suddenly this morning at his home on Joplin Street, death following an attack of heart disease. He had been in poor health for three weeks but was considered improving. He came to town this morning with his son, Will, and was at the Dawson Motor Company’s office when he was seized with heart failure. He was rushed to his home in the ambulance and died there soon afterwards…Mr. Briggle is survived by his wife and three children: two boys, George and Will, and a daughter, Mabel.”    


Did you read that? Were you as surprised as I am? “He was rushed to his home in the ambulance.” In fact, my great-grandfather’s town had a very well-respected, up-to-date hospital. Apparently, though, when my great-grandfather was close to death, the place to send him — via ambulance, no less — was home. That would never happen today.   

This dusty family episode came into perspective for me when I ran across the following numbers: we each spend, on average, over $300,000 on health care during the course of our lifetimes. Of this, over $188,000 is spent after we reach age 65. Studies show that we spend an average of $30,000 on health care in the very last year before we die. People who eventually die from cancer spend even more. The costs can be devastating. 

I would like to think that my frugal Presbyterian great-grandfather completed his life controlling his own healthcare costs and maintaining his dignity. Maybe he was on to something when he persuaded the ambulance driver that the place he needed to be in his final moments was not at the local hospital, but at home with his wife, his two boys, and the sweet young woman who would eventually become my grandmother. May they all rest in peace.   


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References:

Joyce GF, et al. The Lifetime Burden Of Chronic Disease Among The Elderly, Health Affairs 2005 Sept; 24 Suppl 2:W5R18-29

Alemayehu B, Warner K, The Lifetime Distribution of Health Care Costs, Health Serv Res. 2004 June; 39(3): 627 - 642.

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The following is feedback received for this blog: Thanks for the personal-anecdote from your family's past - certainly helps to add perspective to an otherwise seemingly polarized political-topic. If you have any recommendations for resources as far as how I can learn the different perspectives on the current politics and changes in health-care, I'd love to hear them! Thanks! - Mary B.

Question: What do you call physicians who write?
Answer: Physicians.
- Jay Baruch, MD  


I sit in the office and listen as she tells me her story. Her cancer treatment had impacted her family in nearly unimaginable ways. Personal demons are everywhere. Just as she recovered from surgery, her marriage disintegrated. Her life has been and would always be completely different from my own. I am riveted.  

As I sit transfixed, my mind starts working … is this a story I can turn into an essay?    


In a piece entitled, “Thin Walls,” Jay Baruch writes about a woman who leaves college and lives with her grandparents, becoming part of their lives in the months before her grandfather succumbs to a slow and debilitating death from cirrhosis. The story careens dangerously through drug dealing to child neglect to the physical effects of liver failure to suicide to death. We watch proud, angry, and stubborn people collapse. We wonder at the effect on the young woman — a character created by Dr. Baruch, an emergency physician and bioethicist at Brown University. The narrative is breathtaking and is only one of the remarkable fictional essays in his book, Fourteen Stories.  

As an accomplished physician-writer, Dr. Baruch has chosen to work in fiction and he does so for a reason: the stories really belong to the patients. In an essay entitled, The Story Always Comes First, he confesses that “[w]riting about ‘real events’ and ‘real people’ from my roles as a physician makes me feel like a thief … [because] [t]he physician-patient relationship is tender and complex, charged with issues of vulnerability and power.”    

As I listen to my patient run through the latest disasters, I wonder how I could share her story, honestly and reflectively, in a way that betrays nothing of the patient’s private experience. Like Dr. Baruch, I write to “understand particular human behavior and to effectively communicate that which surprises and disturbs me.”  

I decide to pass on turning this woman's difficult struggles into an essay. Maybe a small piece of it will end up in a work of fiction someday. In the meantime, I will continue to admire writers like Jay Baruch.