Notes & Links: September 3, 2013

“Good” Patients and “Difficult” Patients – Rethinking Our Definitions

Louise Aronson, MD writing in the NEJM makes the best case I have read for patient/caregiver engagement. She does not drag her argument through cost benefit ratios or outcomes but speaks to heart of the matter through her father’s illness. And since she is a physician as is her father her message and conclusions have a greater credibility. She has seen both sides. 

The clinical details are clearly detailed in the article. Dr. Louise by her own admission left the doctoring to others but as a trained physician she could not sit back and not think like a physician. That butted heads with not wanting to be a family member complaining about care. As she says: “I had quieted my internal alarms for more than 2 hours.”  She wanted to be a good patient or good family over being the physician.

…the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don’t bother me and you let me be in charge of what happens and when. Such a definition runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes.

That is the money shot here, “active participation of patients and families”. When Donna was in the middle of her chemo or radiation we as a couple, me as a caregiver, her as a patent participated. We found all the HCP were active and attentive to our needs. (Well let’s leave the radiation oncologist out of this.) Each to a person wanted us to be part of the team. And that carried over to the hospice as well. 

Culturally, we could benefit from a lens shift toward seeing more-vocal patients and families as actively engaged in their health care, presenting new, potentially important information, and expressing unmet care needs. At the systems level, we need to both count (using specially designated sections of the medical record) and reward (through diagnostic and billing codes) the time that providers spend talking to patients and families.

This is as important as being the HCP who engages with patients and caregivers. We need to help both the physician and patient benefit not just clinically but financially. 

We Are Paying The Price for Failing to Lead the World in Science Education
All I can say to parents get your child a microscope. Let them use it. Encourage them or they will end up like Mike Adams the ‘Health Ranger” at 

Orac at Respectful Insolence put up this post Mike Adams puts Chicken McNuggets ‘under the microscope.’ Hilarity ensues.This is a long post but will bring you smiles galore. 

In a nutshell Mike Adams takes some Chicken McNuggets under the scope, an expensive scope, and tells us there are fibers in them. 

I’ll take a stab at identifying the mysterious objects that so baffle Adams. Those “hair-like” objects look like dust to me. I mean, seriously. Has Mike Adams ever looked at dust under the microscope at 200X magnification? It’s easy to find images on the web, for example, here, here, and here. Lots of everyday things look really scary under the microscope. I did that when I was a little kid.(Actually, I noticed dust on the microscope slides and was fascinated by it.) 

That’s it for me on this. Orac has a funny post for all you science types. And if you are a parent help your children become adept at science. Get them a microscope. 

New Media Use by Patients Who Are Homeless: The Potential of mHealth to Connectivity
Post, Vaca, et. al publishing online in JIMR offers up data many for those of us who want to find ways to help the homeless with health issues. Clearly communications and follow-up is critical for the homeless population who access a disproportionate share of ED time and dollars. 
Some of the results noted by the authors:

In total, 5788 subjects were enrolled in the study. Of these, 249 (4.30%) patients reported episodes of homelessness in the past year. Patients who had experienced homelessness were more likely to be male (54.6%, 136/249), younger (mean age 40 vs 46 years), African American (38.6%, 96/249) or Latino (25.3%, 63/249), and have lower income and less education than stably housed patients

…patients experiencing homelessness were similar to stably housed patients in types of new media use, modes of media, and frequency of use, defying popular assumptions of a large “digital divide” for patients who are homeless. This finding is consistent with prior research showing that young adults who were homeless versus non-homeless had very similar uses of social network technology and suggests that such similarities may extend to older adults as well. In addition, homeless patients are similar to stably housed patients in “new media use”, meaning they should not be thought of as different or unique from other patients.

Did you get that? Homeless patients should not be thought of as different or unique from other patients in their use and access to ‘new media’. It not surprising that patients experiencing homelessness feel they are treated as inferior within the healthcare system. Consider that in light of the article above from the NEJM on “good patients”. 

This study gives one pause to consider some of the recommendations the authors present regarding pre-paying for minutes, use of cell plans like Lifeline or LinkUp America etc can have a positive outcome on reducing the cost of homelessness on healthcare delivered through the emergency room. This study shows that homeless patients who are not drug or alcohol abusers, or psychotic are seeking the same information as patients who live in big homes. 

And You Think Being a Brain Surgeon is Easy
Where to start? I am gobsmacked after reading Anatomy of a Tragedy in the Texas Observer written by Saul Elbein. Here is the second paragraph from the article:

Physicians who complained about Duntsch to the Texas Medical Board and to the hospitals he worked at described his practice in superlative terms. They used phrases like “the worst surgeon I’ve ever seen.” One doctor I spoke with, brought in to repair one of Duntsch’s spinal fusion cases, remarked that it seemed Duntsch had learned everything perfectly just so he could do the opposite. Another doctor compared Duntsch to Hannibal Lecter three times in eight minutes.

After that you couldn’t stop me from reading this article. And it more about how a free market system can sometimes crash and burn taking human life with it. 

We have to consider the uncomfortable possibility that Christopher Duntsch is to the medical system what the recent West explosion was to the fertilizer industry—a regrettable tragedy, but the price of living in a free-market system. And that with Duntsch, as with other bad doctors, the system worked exactly as it was designed to.

The system worked and lef dead and maimed in its wake. 

I have to point to Arron Carroll at The Incidental Economist for his post about this titled Get Ready to Read the Scariest Medical Story of 2013. He rightly points to the moving parts of the system that failed. 

  • Limiting patients option for holding doctors and hospitals accountable
  • Suing hospitals was made more difficult by the Texas Legislature
  • Medical Board is not an aggressive enforcer

Arron ends his post with the following which captures my very thoughts

We spend so much time discussing the malpractice system, and how it needs to be reformed to protect physicians and lower costs, that sometimes we forget why it’s there. Some doctors are bad, full stop. We need a mechanism to protect patients, too.

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