In reviewing Oliver Sacks’ memoir, On the Move: A Life, book reviewer Andrew Solomon captured the spirit of narrative medicine. I once saw a carpenter at work, tapping a nail once to set it, and then with a decisive second stroke, driving it all the way home. Solomon hit the nail on the head just like that:
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Sunday, May 24, 2015
Tuesday, April 21, 2015
In Part 1, Beverly Swymer told the story of how the Patient Family Advisory Council of Milford Regional Medical Center improved care in the Emergency Room for behavioral health patients.
As Part 2, here are my thoughts on their results, and their ingredients of success. –Ken Farbstein
This effort reduced E.R. recidivism by 82% among a group of behavioral health patients who had frequently used Milford’s E.R. (from 7.3 visits/patient to 1.3, n=12 patients over the period of four months before, and four months after, these changes took effect). This was probably particularly helpful in freeing E.R. capacity because the number of behavioral health E.R. visits at Milford had been growing about 7% each year.
In interviewing Beverly, I had urged her to elaborate on her role, and I was puzzled at the absence of “I” in her answers. We often preach about the importance of collaborative styles, but rarely see them in practice. I came to realize that I was hearing from a genuinely collaborative, self-effacing leader. Beverly served on the PFAC after her long career at Milford as a nurse ended in 2009. Her leadership style, or indeed her nature, along with her acquaintance with many of the staff, and the active participation of staff including the Chair of Emergency Medicine, helped to bring about these solid accomplishments.
When I asked bluntly about her own role and contribution, she answered wisely, in a way that might sound clichéd in someone else’s mouth: “It’s very important to make people feel empowered, to impact the journey, to think this will come about if we work on this together, like we did with rounds in the E.R. The PFAC was a vehicle to come together to see what we could do to make a difference, and we did make a difference.”
Read about other accomplishments of Milford Regional's PFAC. Thanks to Terri McDonald, Kim Munto, and Beverly Swymer for these stories.
Thursday, April 16, 2015
Fabio Giraldo is a Scribe with ScribeAmerica. This is his story:
Tuesday, March 24, 2015
March 23 marked five years since Pres. Obama signed the Affordable Care Act into law. Ten million more people now have insurance coverage. As the ACA has only been in effect for a little more than a year, though, to ascertain its other likely effects, it is more useful to consider the first five years of the universal health coverage law in Massachusetts, the model for the ACA.
In Massachusetts, universal coverage became law in April 2006 as Chapter 58. The most widely cited study of its effects over the first five years describes an improvement in the self-assessed health status of non-elderly Massachusetts adults. That's the gold standard for whether the whole law was worth it: do people feel healthier? Before the law, 60% rated their health as very good or excellent; afterward, 65% rated it that way. Far more people were insured, and got medical care, according to the article by Sharon K. Long, Karen Stockley and Heather Dahlen in Health Affairs in January 2012, "Massachusetts Health Reforms: Uninsurance Remains Low, Self-Reported Health Status Improves As State Prepares To Tackle Costs."
Read a story about the likely effects of universal health insurance on women's health.
Wednesday, March 11, 2015
Friday, January 16, 2015
The poster near the Jewish Community Center's locker rooms proclaims in 288-point type: "Rabbi Loses 35 Pounds!," and then nudges: "Exercise and eating well are the new rituals."
"This program transformed the way I think about meals, food and fitness. I struggled for years to lose weight and keep it off. But the TIO (Take It Off) program put it all together in a way that helped me shed pounds, get strong and fit, and feel good about what I eat and what I don't. Checking in each week in a private session, along with personal training, has helped me keep on track. I'm not going back to the way I used to eat, and I'm not giving up my regular workouts. This has truly brought positive change to my life," says Rabbi Barbara Penzner.
She is being the change, leading by example. Her leadership in several other realms has been inspirational and life-changing, too. To name just two: Years ago, she helped form and guide the Greater Boston Interfaith Organization, an important component of the coalition that brought universal health insurance to Massachusetts. And she led the Hyatt Hotel boycott, which eventually led to fair treatment for hotel workers in Boston and across the country.
Joan Hayes has served as her personal trainer (and mine) at the Jewish Community Center in Newton, Massachusetts. Thanks, Joan!
Read another story about sustaining healthier habits.
Tuesday, January 13, 2015
Sunday, January 4, 2015
Wednesday, December 31, 2014
Tuesday, December 30, 2014
Monday, December 29, 2014
Wednesday, November 19, 2014
Dr. Betsy MacGregor’s story:
We admitted a great number of children who were sick with AIDS to my hospital back in those days, and sadly we lost many of them. I remember one two-year-old boy in particular. He touched me deeply. As was typical, he had acquired the virus from his infected mother when he was born, and despite our best efforts to help him, he was slowly slipping away from us. He lay quietly in his crib, hollow-eyed and emaciated, never smiling or even crying. He simply did not have the energy.
The little boy’s mother had brought him to our emergency room one night, burning up with fever. The chest x-ray we took showed he had pneumonia, and so we promptly admitted him to the pediatric ward. His mother lingered at his side for a time, but then departed and never returned. Eventually we learned she had been admitted to another hospital shortly after leaving ours and had died there from complications of her own AIDS. The one thing she had left her son was his name. She had called him Angel.
Angel had been on our pediatric ward for three months. There was no other place that wanted him, and frankly we were happy to keep him with us. At least we knew he would be fed and kept clean and sheltered and would occasionally be held in another human being’s arms when one of the staff was able to spare a moment or two. We knew he had little time left.
One night, when I was on call and kept busy on the ward into the wee hours of the night, I glimpsed a side of Angel’s story I had not been aware of before. The lights had all been turned down and most of the children put to sleep in their beds, and I was going about my intern’s work – reviewing orders, checking on patients’ vital signs, and peeking in on the sickest ones – when something caught my ear. A faint lyrical sound was whispering down one of the dimly lit hallways. Listening closely I detected the thin notes of a melody carried by a human voice.
I was tired and still had chores to do, but the wistful sound called to me, and so I followed it, curious to learn what its source was. It led me to Angel’s room. Yet what I saw through the doorway as I approached made me pause and remain in the quiet shadows of the hallway rather than enter. For it was clear that more was taking place in Angel’s room than the sad wasting of an unfulfilled life. Something more intimate was happening, something that needed not to be disturbed.
With Angel was his father. I had never seen the man before, but during discussions on our daily morning rounds, I had heard that he often came in the wee hours of the night to visit his son. He was a tough-looking person, unshaven and stamped with the harsh signs of inner city life and his own battle with the AIDS he had acquired during years of drug addiction. I wondered what factors in his life prevented him from visiting in the light of day as other parents did. Perhaps he was fully occupied with trying to survive, I thought, or maybe he just preferred the lonely hours of the night, when he was less likely to encounter the accusing stares of strangers’ eyes.
The man was sitting in a chair, holding Angel on his lap and feeding him infant formula with a dropper. As I watched, he waited carefully for his son’s lips to accept each drop before offering him another, all the while gazing into his child’s eyes and softly crooning a melody – a hauntingly soothing sound, the notes filled with reassurance and encouragement. Angel’s eyes remained fastened in turn on his father’s face, as if he were drinking in life-giving nourishment from the look that he saw there.
The two of them were in such a rapt communion that I remained bound in unmoving silence outside their door. It seemed that I had been summoned not to enter, but to stand as an observer of this exquisite scene, witness to an act of meaning that lay beyond my mind’s measuring.
What I had been called to witness, my heart said, was the love that was shining brightly in that little room. Nothing more than that, and nothing less. In the light of that love, the tragedy of Angel’s pitiful life – of both their lives – was being lifted up and set aside. I could feel the truth of that as surely as anything my medical books had ever taught me.
The shadows in the hallway seemed to whisper, Do you see? This is what love is. It is a force more powerful than even life-destroying disease. It can tenderly embrace whatever the world has abandoned as hopeless and transform it into something to be cherished.
Read a story about the power of love from a group. Thanks to Dr. Betsy MacGregor for permission to reprint this excerpt from her book, In Awe of Being Human: A doctor’s stories from the edge of life and death.
Tuesday, November 4, 2014
Tuesday, October 28, 2014
I retired in 2010 at age 69. Wayne [Altman, MD, my PCP] said, Howard, you should join these groups that Kerri and I have been running. I was pre-diabetic, on the threshold of being obese. I had issues with my blood pressure, glycemic index, cholesterol, and all that stuff. I was skeptical but I was willing to give it a try, because I’ve dealt with weight issues for all my life, and nothing I’d tried before ever worked (or worked for very long).
The secret sauce? You’re in a group, where we all come from different facets of life. The thing we have in common is the need to deal with health and fitness. It doesn’t make a difference if you’re a high-powered executive, or retired, or you work like Stacie. Over 20 weeks, you bond, and you develop a community, and affection. These e-lists are set up for each group, and remain even after the group is over.
I was in Group 4, which began in September 2010. We had buddies; Gerri was mine. I was sending emails. But then I thought: Does she really want to hear this?! She’s much younger. I’ll send her an email, and I’ll ask her, Is it too much? I won’t be offended. Her answer was, Oh, absolutely not! I love it. It’s a reminder for her of what SHE had made as a commitment to do in her own life. It’s support and accountability at the same time. The next week, she shared this, and she suggested Wayne should appoint a nudge to remind the group to do emails. So I did, sharing a daily email about me and responding to others. The traffic on the e-list just took off!
So now we say, Those who post lose the most! You have to be willing to share your difficulties as well as the successes. This is for life. Doing it alone wouldn’t work.
I found I was having success. I decided four months wasn’t enough of a baseline. So I re-upped with another group. By June 2011 I lost 30 pounds and eight inches in my waist, and even better, I managed to keep it off. I sleep like a babe! I’ve become active – I Nordic walk, power walking with poles, and I go to the gym.
I’ve been in a regular group or an advanced group since I’ve started. Although I’ve mastered the exercise and the food piece, my sense is I will always want the connection, the group. The advanced group meets once a month over ten months. Also, occasionally we can get together between the monthly meetings.
So now I’m giving back, paying it forward. I serve as a resource for the wellness group program and I’m a regular “guest speaker” at one of the initial weekly sessions of each new 4-month program to share my experience and offer support. I thank Wayne and Kerri [Hawkins, nutritionist] for saving my life. All my tests are normal or optimal. I’m off statins and blood pressure meds, and I just take Vitamin B-12.
I’m still in contact with my group from 2010, since you develop friendships. I still post to all the groups I’ve been in, and some people respond, even now.
Read another story about weight loss. Thanks to Howard Cloth for sharing his story.
Tuesday, October 14, 2014
Friday, October 10, 2014
Monday, October 6, 2014
Dr. Rich Sagall’s story:
In the late 1990s, I was still doing Family Medicine and Occupational Medicine. A medical social worker friend of mine told me about Patient Assistance Programs. I was in Bangor, Maine and she was in Mississippi. She had made a small database that she kept on her laptop. During home visits, she would look up the programs her patients could make use of.
I’d taught myself to code HTML. I thought, this would be a good project to use that, so I started inputting data on patient assistance programs on weekends and after hours. I put a counter on the website. I felt guilty about it, because my own visits to the website would inflate the count. At first, there were maybe 50 visits a day; maybe three of those were mine, so the total really wasn’t so big.
Now Needy Meds has grown over the last 17 years. We have 20 employees, data on 7,000 points of savings (programs, coupons, co-pay cards, camps, etc.), 13,000 free/low cost/sliding scale clinics, and 8,000 to 10,000 visits a day to our website. We’ve gotten a lot of emails and letters from people about their savings, saying they never knew about patient assistance programs before that. We make medicine affordable when it’s unaffordable.
But I can’t tell you about the specific patients we’ve helped. That’s because of our philosophy: we want to put the fewest obstacles in the way of people getting the information. So we don’t have registration, or log-in, or sign-in. We want access to be anonymous, since some people were concerned about putting their personal information on the Web. They just type in the drug name, and we give them all the information, including an interactive pdf.
Now we’re way beyond just medicines; now we have copay cards, coupons, disease-based assistance (programs based on the diagnosis), programs to help people apply for patient assistance programs, including 1,000 state/local government assistance progs, and 3,000 free clinics.
We keep all the data current, reviewing every program at least every six months.
Advice for patient advocates: Bookmark this site. There’s no such thing as a free lunch, but sometimes there are free meds.
See a story on the cost of medication, or see Dr. Sagall's blog.
Thanks to Dr. Richard Sagall of NeedyMeds for the interview.
Friday, August 29, 2014
John Sundman and Betty Burton tell about their son:
Jakob was born two years after our daughter. It was pretty dramatic – the doctors did these tests and looked at the results and then asked Betty and me if we wanted to buy burial insurance! It was really tacky!
He was a preemie, six weeks early. He was pretty big, at five pounds, seven ounces, so they were wondering whether we had gotten the date of conception wrong. But his earlobes were translucent, and there were other signs that showed that developmentally he was not too far along. His breasts weren’t formed; he didn’t have nipples. His ears were not all the way formed.
In his first year, he was sickly, and didn’t put on weight. He didn’t meet any developmental milestones. We were aware of that because we were not totally inexperienced parents; we’d had another child already.
Even accounting for that, he was just a lump. When I was changing his diapers, I said to Betty: I don’t think this baby can see. He was six weeks old at the time.
We went to a pediatric ophthalmologist who diagnosed him with strabismus (lazy eye) and nystagmus and said we should patch one eye. As an infant, he was sensitive to light, so it was hard to look in there; and the doctor can’t really tell. He really needed to see Jakob’s eyes under anesthesia, but he was too weak and sickly; so the anesthesia could kill him. That went on for a long time.
We went through a couple of doctors who were just arrogant. One said the main problem was a nervous mother. But Betty had worked on her PhD in molecular genetics at Purdue and used to teach pre-medical students, so she was not intimidated. She’d say, I graphed his weight; here’s the normal distribution; he’s a standard deviation below; he’s not growing.
He didn’t show any interest in anything for a year, not in toys, and didn’t reach for anything, he was just kind of there. Then in a toy store once, he reached for a ball, so I bought that thing so damned fast! You want it, kid, it’s yours.
We had to take him for medical care from our home in Westborough to Harvard Community Health Plan in Harvard Square in Cambridge. That’s a long shlep to see the doctor! Then we moved even farther away to Gardner, 57 miles away from Boston, to a much better house.
They put Jakob under anesthesia and learned that his retinas were all damaged, with lots of scarring. They did a blood test that showed toxoplasmosis, a parasitic disease you can get from cats. That’s why they say to stay away from kitty litter.
The classic hallmark of that is that it almost always attacks the eyes and the optic nerve. It attacks the central nervous system. It happened when he was a fetus, they said, telling us that the infection is over now, that we should take care of him and he would be fine.
Betty had a friend who was the head of nursing at UMass Worcester, with access to their medical library. This was before the Internet, when medical information was hard to access. It was like the Man from UNCLE. She found a book, Infectious Diseases of the Fetus and Newborn, a 1200 page textbook with a 90 page article on toxoplasmosis. Betty was reading it to me until 4 a.m. in bed, and said, Oh my God, John! Two-thirds of infected babies spontaneously abort. Most of them have mental retardation, and all of them have eye problems. There’s scarring of the brain, since the organism eats the brain matter. It can go into the heart and lungs too.
Forty percent of the world population adults have toxoplasmosis, but if you get it as an adult, your immune system takes care of it.
Betty found an article by Jack Remington of Stanford University Medical School, who said we CAN do something. We had changed doctors a couple of times, since we were just being jerked around. This was the article that was in the textbook
The doctors did a CT scan and the report said Jakob had hydrocephalus. So we went to a pediatric neurosurgeon, the best in Boston. He told us, I can’t operate for reasons A, B, C, and D. He’ll just be a vegetable, so just institutionalize him and have another child. We were outraged!
We did get a second opinion which said the baby cannot be operated on for hydrocephalus, but it’s not causing any problems right now anyway.
Betty got in touch with Jack Remington; who said, We’ve been treating this in pregnant women and newborns in France, on a drug regimen they’d developed. Dr. Remington was pushing for wider adoption of it in the U.S., but the FDA has not approved the medicines for this purpose, so we would need a doctor to get a waiver to use that protocol. Dr. Remington said he would then guide our doctor through the protocol.
Jakob was now 18 months old, and somewhere along the way, we had had it. We wrote to the head of Harvard Community Health Plan saying, Your obstetrician screwed up by missing the diagnosis even though Betty reported all the signs while she was pregnant.
All three doctors were condescending; we only liked the ophthalmologist. But the lawyers said the only one we could sue was him! He was the only one who had done anything good for Jakob.
To placate us they assigned Don Berwick, because we had good reason to be angry. He was the eighth pediatrician we’d seen. He was great. He listened to the whole history. Betty met with him for an hour and a half; he made sure he had the whole picture. He didn’t interrupt, or tell us where our thinking was wrong, or that our facts were wrong, like other doctors. He said, Let me talk to Jack Remington.
They had Jakob take two powerful neurotoxins - drugs that were good at killing toxoplasmosis. The first is pyrimethamine; the second is sulfadiazine, to kill the organism; the third part of the cocktail is folinic acid, which mitigates the toxic effects of one of the other drugs.
They got it all worked out. Don was about to go on vacation out of the country, so he left it with a woman doctor who was the head pediatrician. He was a pretty young doctor at the time in 1983.
So we start the drug therapy. We’re about four days into it and suddenly Jakob is shaking on the floor, having a seizure. I call an ambulance.
We found out there were two things going on: the baby’s weight was said to be pounds instead of kilograms, so they were basically giving our 7 lb baby [???] the dose for a grown woman. The overdose had caused the seizures. On top of that, the doctor had prescribed folic acid instead of folinic acid, so there was nothing to counteract the chemo agent.
After his vacation Don came back and gave Betty the medicine bottles, saying we should hold onto them. The implication was that if we wanted to sue them, we would have this as evidence. Betty left with the bottles that showed the errors by the prescribing doctor.
For next six months, we had a doctor we could trust, on the same page with us. He took charge. Jakob started to do better.
He started going to early intervention. When he got to be college age, he attended classes at Bridgewater State College. Now, at age 31, he has organized people to help in food distribution. His vision is poor, but he can read normal-sized print. He calls it “Facebooking” because he has to hold the book so close to read. I’d like for that doctor who said he’d be a “vegetable” to see him now!
Betty and I were very happy with Dr. Berwick's medical care of our son and indeed of our family. We do believe that he saved Jakob's life, for if Jakob had not been treated we're sure we would have lost him to the disease. And Don was always kind, thoughtful, humble, hardworking, and clearly motivated by a love of children and of ending or reducing suffering.
Thanks to John and Betty Sundman for sharing Jakob’s story.
Read another story about Don Berwick.