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The Last Straw: My Road To A Revolution

This week’s host of medical grand rounds invited individuals to submit blog posts that feature stories about “sudden change.”  As I meditated on this theme – I realized that one of my patients played a key role in my sudden career change from academic medicine to joining a healthcare revolution.

As chief resident in PM&R, I spent a few days a month at an inner city clinic in the Bronx, helping to treat children with disabilities.  The clinic was dingy, overcrowded, largely windowless, and had waiting lines out the door starting at 8am.  Home health attendants generally accompanied the wheelchair-bound children to the clinic as many of them were orphans living in group home environments.  The kids had conditions ranging from cerebral palsy, to spinal cord injury from gun shot wounds, to severe spina bifida.  They sat together in a tangled waiting room cluttered with wheelchairs, walkers, crutches, and various prosthetics and orthotics.  There were no toys or even a TV for their amusement.  The air conditioning didn’t work well, and a lone clock ticked its way through the day with a bold black and white face.

The home health aides were eager to be called back to the examination rooms so that they could escape the oppressive conditions of the waiting room.  I opened the door to the room and called the name of one young man (we’ll call him Sam) and an aide leapt to her feet, knocking over another patient’s ankle-foot orthosis in the process.  She pushed Sam’s electric wheelchair through a series of obstacles to the exit door and back towards the examining room.

Sam was a teenager with cerebral palsy and moderate cognitive deficits.  His spine was curved into an S shape from the years of being unable to control his muscles, and he displayed the usual prominent teeth with thick gums of a patient who’d been on long-term anti-seizure medications.  He looked up at me with trepidation, perhaps fearing that he’d receive botox injections for his spastic leg muscles during the visit.  His wheelchair was battered and worn, with old food crumbs adhering to the nooks and crannies.

“What brings Sam here today?” I asked the home health aide, knowing that Sam was non-verbal.  She told me that the joystick of his electric wheelchair had been broken for 10 months (the chair only moved to the left – and would spin in circles if the joystick were engaged), and Sam was unable to get around without someone pushing him.  Previous petitions for a joystick part were denied by Medicare because the wheelchair was “too new” to qualify for spare parts according to their rules.  They had come back to the clinic once a month for 10 months to ask a physician to fill out more paperwork to demonstrate the medical necessity of the spare part.  That paperwork had been mailed each month as per instructions (there was no electronic submission process), but there had been no response to the request.  Phone calls resulted in long waits on automated loops, without the ability to speak to a real person.  The missing part was valued at ~$40.

I examined Sam and found that he had a large ulcer on his sacrum.  The home health aid explained that Sam had been spending most of his awake time in a loaner wheelchair without the customized cushioning that his body needs to keep the pressure off his thin skin.  She said that she had tried to put the electric wheelchair cushion on the manual chair, but it kept slipping off and was unsafe.  Sam’s skin had been in perfect condition until the joystick malfunction.  I asked if he’d been having fevers.  The aide responded that he had, but she just figured it was because of the summer heat.

Sam was transferred from the clinic to the hospital for IV antibiotics, wound debridement, and a plastic surgery flap to cover the gaping ulcer hole.  His ulcer was infected and had given him blood poisoning (sepsis).  While in the hospital he contracted pneumonia since he had difficulty clearing his secretions.  He had to go to the ICU for a period of time due to respiratory failure.  Sam’s home health aide didn’t visit him in the hospital, and since he was an orphan who was unable to speak, the hospital staff had to rely on his paper medical chart from the group home for his medical history.  Unfortunately, his paper record was difficult to read (due to poor handwriting) and the hospital clerk never transferred his allergy profile into the hospital EMR.  Sam was violently allergic to a certain antibiotic (which he was given for his pneumonia), and he developed Stevens-Johnson Syndrome and eventually died of a combination of anaphylaxis, sepsis, and respiratory failure.

When I heard about Sam’s tragic fate, it occurred to me that the entire system had let him down.  Bureaucratic red tape had prevented him from getting his wheelchair part, poor care at his group home had resulted in a severe ulcer, unreliable transfer of information at the hospital resulted in a life-threatening allergic reaction, and a lack of continuity of care ensured his fate.  Sam had no voice and no advocate.  He died frightened and alone, a life valued at <$40 in a downward spiral of SNAFUs beginning with denial of a wheelchair part that would give him mobility and freedom in a world where he had little to look forward to.

Sam’s story was the last straw in my long list of frustrations with the healthcare system.  I began looking for a way to contribute to some large scale improvements – and felt that IT and enhanced information sharing would be the foundation of any true revolution in healthcare.  And so when I learned about Revolution Health’s mission and vision, I eagerly joined the team.  This is a 20 year project – creating the online medical home for America, with complete and secure interoperability between hospitals, health plans, healthcare professionals, and patients.  But we’re committed to it, we’re building the foundation for it now, and we know that if successful – people like Sam will have a new chance at life.  I can only hope that my “sudden change” will have long lasting effects on those who desperately need a change in healthcare.This post originally appeared on Dr. Val’s blog at

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5 Responses to “The Last Straw: My Road To A Revolution”

  1. earthling says:

    Thanks Val – really moving. It is interesting that each of us seems to have a personal “tipping point” – too bad that yours was an especially tragic one. 

  2. Joe G says:

    Ugh. That story makes my blood boil. I wish you could print it out and hang it above the desk of every damn bureaucrat in the chain that lead to Sam’s death.

  3. Kim Sanders-Fisher says:

            When American’s say that Universal Healthcare would bankrupt the government I am always struck by the painful reality of situations like this tragic case.   Government number crunchers are so myopic in their interpretation of the cost of providing care that they loose all sight of the financial consequences of not providing timely care.  The $40 for a Wheelchair part was avoided, but the government must have been responsible for covering the considerable cost of subsequent treatment, for the ulcer, the infection and the reaction that required a stint in the ICU.  Inevitably the system must pay a high price for the folly of ignoring minor details while a condition is manageable and effective treatment is more affordable,      

           Americans need to understand that not only do these ruthless bureaucratic decision cause tremendous human misery, the “Sledgehammer” principal of waiting until only the most radical strategy stands any chance of working, is not cost effective.  Sadly this is the preferred tactic in the <?xml:namespace prefix = st1 ns = “urn:schemas-microsoft-com:office:smarttags” /><st1:country-region w:st=”on”><st1:place w:st=”on”>US</st1:place></st1:country-region> not just in Healthcare, but in numerous other areas as well like care of vulnerable children, education and handling youth offenders. <SPAN style=”mso-spacerun: yes”> </SPAN>All of these areas need pragmatic reevaluation to determine where money invested early can prevent catastrophic costs later on. <SPAN style=”mso-spacerun: yes”> </SPAN>I am sure it would have been more affordable to pay for the improvements that were called for in <st1:City w:st=”on”><st1:place w:st=”on”>New Orleans</st1:place></st1:City> flood defenses than it will be to pay for the damage caused by Katrina. For such a business oriented nation I am always shocked by <st1:country-region w:st=”on”><st1:place w:st=”on”>America</st1:place></st1:country-region>’s skewed priorities and how they never seem to learn from past errors or try to fix a clearly dysfunctional system. <SPAN style=”mso-spacerun: yes”> </SPAN></FONT></P>
    <P class=MsoNormal style=”MARGIN: 0in 0in 0pt; TEXT-ALIGN: justify”><FONT face=”Arial Narrow”><SPAN style=”mso-spacerun: yes”>       </SPAN>With regard to Medical care there is a significant savings made by relying on routine testing, early detection of disease and rapid intervention when a diagnosis is made. <SPAN style=”mso-spacerun: yes”> </SPAN>Initially universal access to care would be plagued by the long history of ignored priorities; millions of Americans who are currently unable to afford treatment will seek treatment for conditions that should have been dealt with more promptly. <SPAN style=”mso-spacerun: yes”> </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN>The good news is that if all Americans had access to such care over time the cost of care would become a lot more manageable as the positive effect of early detection took hold. <SPAN style=”mso-spacerun: yes”> </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN></FONT></P>
    <P class=MsoNormal style=”MARGIN: 0in 0in 0pt; TEXT-ALIGN: justify”><FONT face=”Arial Narrow”><SPAN style=”mso-spacerun: yes”>       </SPAN>In the 90s US Medical facilities all over the <st1:country-region w:st=”on”><st1:place w:st=”on”>US</st1:place></st1:country-region> thought they were making fiscally sound decisions when they cut back on basic Nursing staff.<SPAN style=”mso-spacerun: yes”>  </SPAN>Their poorly conceived strategy backfired when staff resisted the “more with less” exploitation by leaving Nursing in droves.<SPAN style=”mso-spacerun: yes”>  </SPAN>Instead of recognizing that the toxic work environment had precipitated a “Nursing Exodus” the “Nursing Crisis” became an excuse for even more radical staffing cuts and unworkable conditions. Hospitals are now stuck paying huge fees to Nursing Agency just to bring back Nurses who were once on their payroll! <SPAN style=”mso-spacerun: yes”> </SPAN>Instead of reversing the damage of Deliberate Negligent Understaffing, Medical facilities insist on hemorrhaging their HR budget on top heavy Management. </FONT></P>
    <P class=MsoNormal style=”MARGIN: 0in 0in 0pt; TEXT-ALIGN: justify”><FONT face=”Arial Narrow”><SPAN style=”mso-spacerun: yes”>       </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN>The experience mix has deteriorated and there are fewer cleaning staff leading to poorer standards of hygiene and those dreaded Hospital bugs.<SPAN style=”mso-spacerun: yes”>  </SPAN>The exhaustion of overstretched Medical staff has led to a huge increase in errors while infection rates have increased dramatically too. Mistakes and infections cost money, just as they did in the case you described, but they also contribute to unnecessary human misery.<SPAN style=”mso-spacerun: yes”>  </SPAN>So how much money is being saved by relying on fewer, less qualified Nursing staff and fudging the gaps in coverage using Agency temps?<SPAN style=”mso-spacerun: yes”>  </SPAN>None; this disastrous experiment in so called “cost containment” needs to end ASAP before more people suffer and die due to substandard care.<SPAN style=”mso-spacerun: yes”>  </SPAN>The <A href=” “>C.U.T. Campaign to CONTROL UNDERSTAFFING TODAY</A>, really needs to hear from Dr. Val and the voice of reason so please visit the two  T.E.A.M. Blogsites, <A href=””>TRANSPARENCY for EQUAL ACCOUNTABILITY in MEDICINE</A><SPAN style=”mso-spacerun: yes”>  </SPAN><SPAN style=”mso-spacerun: yes”> </SPAN>To read about  <A href=” “>US Disaster Preparedness</A> a new concept for <A href=””>Medical Risk Insurance</A> or an Idea for change see <A href=””>an Innovative Solution.</A> <SPAN style=”mso-spacerun: yes”>  These are just my personal thoughts and ideas regarding US Healthcare, but I welcome your comments. </SPAN></FONT></P>

  4. pete14rose says:

    Dear Dr. Val                                                                                                                             I am a 34 yr. old construction worker who is stuck in a bad situation. I have what my Dr. calls displaced sacrum. My sacrum frequently pops out of place and my Dr. has to manipulate it back in place which is extremely painful. My Dr. is a sports Dr. not a chiropractor so he also induces medicines.Is there a procedure that con be done to permanently fix my sacrum from displacing. I would be very grateful for any information you could share with me concerning this matter. Much love to all, pete14rose.

  5. ValJonesMD says:

    Pete – we have an orthopedic surgeon available to answer your question.  Please go to the “Doctor Is In” discussion group and ask him for some information, ok?  All best, Val

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