August 22nd, 2007 by Dr. Val Jones in True Stories
1 Comment »
Dr. Sid Schwab recently wrote a wonderful blog post about what doctors feel when they treat patients who remind them of their own kids. For example, he describes how it makes the physician want to run home and hug his/her kids out of gratitude that they’re ok. His post reminded me of an experience I had in the pediatric Emergency Department where I came face to face with memories of my own childhood trauma.
I was bitten in the face by a neighbor’s dog when I was about 4 years old. It was unprovoked and completely unexpected. The dog had no history of viciousness and I had no history of tormenting the creature. I was standing in the hallway, eye to eye with the dog (we were the same height) and I reached out to gently pet him when he attacked me. My parents freaked out, blood was pouring out of my face, and apparently it initially looked as if he’d gotten my left eyes since it was covered in blood. I was rushed to the local hospital where a family physician cleaned me up and put stitches in my cheek, eyebrow, and corner of my eye. It was hard to sit still for the numbing medicine and I was crying softly through it all. I don’t remember the details of the event, but I do still have the scars on my face – scars, I am told, that would be less noticeable if a plastic surgeon had closed the wounds.
Flash forward 30 years and I’m working a night shift in the pediatric ED. A father carries in his young daughter, crying and bloody. She had been mauled by a dog – and had sustained injuries to her face only. I escort the little girl to an examining room and begin flushing her wounds with saline to get a sense of how extensive they are. Dad goes to fill out paperwork while mom holds the girl’s hand.
It was eerie – her injuries were very similar to my own. I figured she’d need a total of 15 stitches or so, all on the left side of her face. There was no missing flesh so I knew that the cosmetic result would be good. I explained to her mom that we would be able to stitch her up nicely – and that she’d likely have minimal scarring. The mom asked for a plastic surgeon – and I agreed to call one for her right away.
That night I had a new appreciation for what my parents must have felt when I was bitten. I could see these strangers’ concern – how they hoped that their little girl wouldn’t be permanently disfigured, how they wanted the most experienced doctor to do the suturing, how they held her hand as she cried. It was really tough – but we were all grateful that the injuries weren’t more severe… and I was glad that I didn’t have to do the suturing. I showed the girl my scars and she seemed comforted by how they had turned out. This experience reminded me how personal experience can add a special dimension to caring for others, and that sometimes having been a patient can make you a better doctor.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 17th, 2007 by Dr. Val Jones in True Stories
3 Comments »
I was pleased to receive an email invitation from Dr. Jon Mikel from Unbounded Medicine to blog about surgery. He writes,
“Please feel free to post anything related to surgery,
like surgical procedures, mistakes during surgery or during your training,
lessons learned, tips, first operation done solo, memorable operations,
memorable patients, jokes, your point of view about surgery, or even why you dislike surgery or surgeons (if that is the case).”
As my mind wandered through all the possible posts I could prepare, I settled on a touching story that highlights the life of a wonderful surgeon named John Schullinger. Dr. Schullinger was the surprised recipient of one advanced case of intussusception in a 10 month old baby girl. The baby was shipped to him from a distant general hospital where they didn’t have any pediatric surgeons to take the case. On arrival the baby was moribund – septic and seizing, with an abdomen distended with gangrene.
Dr. Schullinger explained the gravity of the baby’s condition to her mom, promised not to give up on the baby, and took her to the O.R. for a bowel resection. Against all odds – and having to resect everything from the terminal ileum to the sigmoid colon – the baby made it through. A jubilant mother thanked the surgeon, and promised to keep in touch, though the family would be moving out of the country.
Every Christmas, the baby’s mom sent Dr. Schullinger a card from Canada – detailing her daughter’s growth and accomplishments and thanking him again for saving her life. Each Christmas he responded with a hand written note, expressing his pleasure with the child’s progress.
This ritual continued each year for 25 years until one day the young woman went to visit the surgeon and thank him in person. She was interviewing for medical school at Columbia, the same institution where Dr. Schullinger had saved her life nearly a quarter century earlier. It was a tearful reunion and touching for both surgeon and patient – because they could see how operations can change lives, and how babies that you operate on can grow up to be physicians who help other babies.
Dr. Schullinger saved my life – but his influence reached far beyond his technical skills in the O.R. His compassion and faithful follow up responses to my mom showed me what being a doctor is all about. My fondest hope is that I’ll live up to his example.
So for all you surgeons out there… you work longer hours than most others on this planet, you sacrifice your lifestyle to serve others, and yet you rarely see how your work impacts families long term. I am here to thank you on behalf of all those who can’t or don’t – please take courage from this story. You never know if the patient you operate on will come back and take over the scalpel for you one day…
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 14th, 2007 by Dr. Val Jones in Expert Interviews
4 Comments »
In a recent study conducted by the Agency for Healthcare Research and Quality (AHRQ), it was argued that better primary care could prevent 4 million hospitalizations per year. This staggering potential savings – on the order of tens of billions of dollars – seems like a good place to start in reducing some of the burden on the healthcare system (and reducing unnecessary pain and suffering). I interviewed Dr. Joe Scherger, Clinical Professor of Family & Preventive Medicine at the University of California, San Diego School of Medicine (UCSD) and member of the Institute of Medicine, to get his take on the importance of prevention in reducing health costs.
Dr. Val: What do the AHRQ
statistics tell us about the role of primary care in reducing healthcare
costs?
Volumes!
Primary care works with the
patient early in the course of illness, maybe even before it has developed, such
as with prehypertension and prediabetes. Primary care focused on prevention
with patients keeps people healthier and out of the
hospital.
Dr. Val: What can individual
Americans do to reduce their likelihood of having to be admitted to the
hospital?
Prevention begins with the individual,
not the physician. 60% of disease is related to lifestyle. Bad habits such as
smoking, overeating, not being physically fit, and stress underlie most common
chronic diseases. If Americans choose to be healthy and work at it, we would
save tremendously in medical expenses.
Dr. Val: Are there other studies
to suggest that having a medical home (with a PCP) can improve
health?
The medical home concept is new and lacks
studies, but the work of Barbara Starfield and others have confirmed the
importance of primary care and having a continuity relationship with a primary
care physician. The more primary is available, the healthier the population.
The opposite is true with specialty care.
Dr. Val: Why did the
“gatekeeper” movement (promoted by HMOs) fail, and what is the current role of
the family physician in the healthcare system?
The
“gatekeeper” role failed because it restricted patient choice. Patients need to
be in control of the health care, which is what patient-centered care is all
about. HMOs put the health insurance plan in charge, something which was hated
by patients and their physicians.
Dr. Val: In your work with the
IOM (specifically in Closing the Quality Chasm) did the role of primary care and
preventive medicine come up? If so, what did the IOM think that PCPs would
contribute to quality improvement in healthcare? Did they discuss (perhaps
tangentially) the cost issue (how to reduce costs by increasing preventive
measures?)
Just before the IOM Quality Reports
came out, the IOM did a major report on the importance of primary care. The
importance of primary care and prevention are central to improved quality. In
the “Chasm Report”, the focus was more on the patients taking greater charge of
their health care, and the realization that primary care is a team effort, and
not just a role for physicians. The reduction in costs comes from making health
care more accessible (not dependent on visits) through health information
technology and the internet. Preventing disease, and treating it early when it
comes, are the keys to quality and cost reduction. Revolution Health is a
vehicle for this, consistent with the vision of the “Chasm Report.”
Dr. Val: How can patients be sure that they’re getting the best primary care?
First take charge of your
own primary care. The traditional patient-physician relationship was, “Yes
doctor”, “Whatever you say doctor”. Your care would be limited by the knowledge
and recall (on the spot) of your doctor.
Much better is a “shared care” relationship with your primary care
physician and team. After all, the care is about you. Be informed. Make your
own decisions realizing that the physician and care team are advisors, coaches
in your care. You may agree with them, or disagree and do it your way. By
having your own personal health record and being connected to resources like
Revolution Health, you are empowered to get the care you want and need.
Finally, choose your primary care wisely. Not just anybody will do. Your
primary care physician is as important a choice as your close friends. You need
to like and trust this person. Have a great primary care physician who knows
you and cares about you and your health care is in real good shape. But, no
matter how good she or he is, you still must take responsibility for your care.
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
August 12th, 2007 by Dr. Val Jones in True Stories
5 Comments »
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 RevolutionHealth.com.
July 30th, 2007 by Dr. Val Jones in Opinion
1 Comment »
You may remember the horrifying story of a young French woman who passed out after taking some sedatives, and her dog tried to wake her up by gnawing on her face. She was the first recipient of a face transplant, and is on immunosuppressant therapy to this day to prevent rejection of the donor tissue. This immunosuppression puts her at greater risk for cancer and infections and raises the issue of whether the benefits (a closer approximation of a normal appearance than reconstruction of her face from her own body tissue) outweigh the risks (a shortened lifespan and potential hospitalizations for infections, eventual tissue rejection, and perhaps cancer.)
Many people suffer severe facial disfigurement from accidents and burns every year. Face transplants could give them a chance at a relatively normal appearance – but American doctors are unwilling to put them at risk for what is in essence a cosmetic procedure. However, Harvard physicians are now offering face transplants to those who are already on immunosuppressants for organ transplants they’ve previously received. As you may imagine, the number of people who qualify for face transplants is rather small – as you’d have to have had an organ transplant and then coincidentally sustained severe trauma and tissue loss to the face.
The Boston Globe ran an interesting story on a man who was severely disfigured by facial burns and could have been eligible for a face transplant in France. He chose to undergo reconstruction from his own tissues, which requires no immunosuppression. He says that he is glad that his body is healthy, that he requires no medications, and that the risks of a face transplant are not worth the benefits, though he remains severely disfigured.
I think it’s interesting that the French took a different stand on this issue – allowing people to choose to have a cosmetic procedure at the expense of general health, longevity, and risk for life-threatening illness.
I have known patients who decline limb amputations for fear of disfigurement – even though the gangrene in the limb is sure to result in sepsis and eventual death. A person’s appearance and personal identity are sometimes inextricably linked – so that some would choose death over disfigurement (even of a limb). Is this choice pathological, or is it their right to choose? Given the choice between disfigurement or death, I’d choose disfigurement. I’d also not choose a face transplant over reconstruction from my own tissues, even if the aesthetic outcome is inferior. Still, I’m hesitant to say that those who’d rather live a shorter, less healthy life with a more natural face are unilaterally making the wrong choice for them. For the time being, though, people who wish to make that choice will need to do so outside of the US.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
