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.
Have a Story to Tell? Had a medical error?
Frustrated with a health problem?
Wednesday, November 19, 2014
Dr. Betsy MacGregor’s story:
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.
Thursday, February 28, 2013
I recently scanned the literature for the Society for Participative Medicine, finding these key conclusions:
Domain 1: Patient Experience
Participation by inpatients protects against adverse events, reducing them by half (Weingart et al, 2011).
Multidisciplinary collaborative patient rounds have created a strong trend of overall decreased mortality in New Hampshire's Concord Hospital (Kendall, 2003).
A medical home for children with special health care needs reduced hospitalization by more than 20% (58% vs. 43%), and nearly cut in half the number of parents missing 20 days or more of work (26% vs. 14%) (Davidson et al, 2004).
Patients who participate more actively in physical therapy after hip fracture achieve 25% more of their self-reported pre-fracture function (Talkowski et al, 2009).
Domain 2: Health Literacy
Interactive computer based support systems have positive effects on knowledge, social support, and clinical outcomes (Coulter and Ellins, 2007).
Enabling patients to see their doctors' progress notes in Open Notes led two-thirds of patients to report they are now more likely to take medications as prescribed (Delbanco et al., 2012).
Domain 3: Choosing Treatment
Using PatientsLikeMe enables epilepsy patients to have fewer Emergency Room visits (Wicks et al, 2012).
Genetic testing for BRCA1/2 leads women to select risk-reducing surgeries, post-menopausal hormone therapy, and pre-implantation genetic diagnosis (Lorizio et al, 2011).
Patient participation in medical decisions has been linked to improvements in adherence to treatment plans (Golin et al, 2006).
Shared Decision Making studies show:
Mastectomies were reduced by 74% (Whelan et al, 2004).
Prostatectomies were reduced by 33% (Auvinen et al, 2001).
Cardiac revascularization surgery was reduced by 29% (Morgan et al, 2000).
Decision aids were associated with 26% fewer hip replacement surgeries, 38% fewer knee replacements and 12-21% lower costs over a six-month period (Arterburn et al, 2012).
Surgery for herniated disks was reduced by 32% (47% vs. 32%), and back pain was significantly lessened (Deyo et al, 2000).
Hysterectomies were reduced by 21%, with cost reduction averaging $1,184 (Kennedy et al, 2002).
Domain 4: Self-Management
Patient activation - having the knowledge, skills and confidence to manage one's health - is positively related to 12 patient outcomes, e.g., having an Emergency Department visit, having A1c, HDL, and triglyceride levels in the normal range, etc. (Greene & Hibbard, 2012).
A systematic review article on family-centered care for children with special health needs concluded that most of the 24 studies found at least one association of family-centered care with a positive outcome (Kuhlthau et al, 2011).
Educational and self-help programmes that are actively supported by clinicians improve health outcomes for patients with depression, eating disorders, asthma, diabetes, and hypertension (Coulter and Ellins, 2007).
Domain 5: Health Promotion
Patient-centered care in outpatient visits (defined by Davis Observation Codes: patient activation like patient questions, chatting, and health knowledge; counseling, compliance, nutrition, exercise and health promotion) decreased specialty care visits, hospitalizations, and laboratory and diagnostic tests, and reduced total medical charges by about one-third (Bertakis et al, 2011).
Behaviour therapy for patients with advanced lung cancer produced positive effects in physical functioning (Cormer et al, 1996).
Domain 6: Public Engagement
Online patient communities that have been designed to ascertain clinical outcomes can identify the efficacy, or inefficacy, of certain drugs. PatientsLikeMe, for example, ascertained that lithium was not effective for its community of patients with ALS (Wicks et al, 2011).
David Arterburn et al, "Introducing Decision Aids at Group Health Was Linked to Sharply Lower Hip and Knee Surgery Rates and Costs," Health Affairs, Oct. 2012.
Auvinen A, Hakama M, Ala-Opas M, Vornanen T, Leppilahti M, Salminen P, et al.A randomized trial of choice of treatment in prostate cancer: the effect of intervention on the treatment chosen. BJU International 2004;93(1):52-6. Auvinen A, Vornanen T, Tammela T L, Ala-Opas M, Leppilahti M, Salminen P, et al.A randomized trial of the choice of treatment in prostate cancer: design and baseline characteristics. BJU International 2001;88(7):708-15.
Bertakis KD, Azari R., Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med. 2011 May-Jun;24(3):229-39. See pages 229, 233 & 236.
Corner J. et al. "Non-pharmacological intervention for breathlessness in lung cancer," Palliat Med 1996;10:199-305.
Angela Coulter and Jo Ellins, Effectiveness of strategies for informing, educating, and involving patients [a systematic review] at BMJ 2007; 335 doi: http://dx.doi.org/10.1136/bmj.39246.581169.80
Davidson EJ et al, "The pediatric alliance for coordinated care: Evaluation of a medical home model," Pediatrics, 113.5, May 2004, pS1507.
Tom Delbanco, Jan Walker, Sigall K. Bell, Jonathan D. Darer, Joann G. Elmore, Nadine Farag, Henry J. Feldman, Roanne Mejilla, Long Ngo, James D. Ralston, Stephen E. Ross, Neha Trivedi, Elisabeth Vodicka, Suzanne G. Leveille; Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead. Annals of Internal Medicine. 2012 Oct;157(7):461-470.
Deyo RA, Cherkin DC, Weinstein J, Howe J, Ciol M, Mulley AG. Involving patients in clinical decisions: impact of an interactive video program on use of back surgery. Medical Care 2000;38(9):959-69.
Golin, C.E., M.R. DiMatteo, and L. Gelberg (1996), "The role of patient participation in the doctor visit: Implications for adherence to diabetes care," Diabetes Care, 19, 1153-64.)
Greene, J and Hibbard, JH, "Why does patient activation matter?: An examination of the relationships between patient activation and health-related outcomes," Journal of General Internal Medicine, May 2012, 27(5), pages 520-6.
Kendall, EM, "Improving patient care with collaborative rounds," American Journal of Health-System Pharmacy, Vol. 60, Jan. 15, 2003, pages 132-135.
Kennedy AD, Sculpher MJ, Coulter A, Dwyer N, Rees M, Abrams KR, et al.Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA 2002;288(21):2701-8.
Kuhlthau, KA et al., "Evidence for family-centered care for children with special health care needs: A systematic review," Academic Pediatrics, Vol 11, No. 2, pages 136-143.
Lorizio W, et al, "Pharmacogenetic testing affects choice of therapy among women considering tamoxifen treatment," Genome Med. 2011; 3(10): 64. Published online 2011 October 4. doi: 10.1186/gm280
Morgan MW, Deber RB, Llewellyn-Thomas HA, Gladstone P, Cusimano RJ, O'Rourke K, et al. Randomized, controlled trial of an interactive videodisc decision aid for patients with ischemic heart disease. Journal of General Internal Medicine 2000;15(10):685-93.
JB Talkowski et al, "Patient Participation and Physical Activity During Rehabilitation and Future Functional Outcomes in Patients After Hip Fracture," Arch Phys Med Rehabil Vol 90, April 2009.
Weingart SN et al, Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011 Jun;23(3):269-77.
Whelan T, Levine M, Willan A, Gafni A, Sanders K, Mirsky D, et al. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA 2004; 292(4):435-41.
P Wicks et al, "Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm," Nature Biotechnology, Vol. 29, No 5, May 2011, pages 411-414.
P Wicks et al., "Perceived benefits of sharing health data between people with epilepsy on an online platform," Epilepsy & Behavior, Vol 23, #1, Jan. 2012, pages 16-23, Table 2.
Wednesday, November 14, 2012
Thursday, October 25, 2012
Wednesday, October 17, 2012
Saturday, October 13, 2012
The saddest part of the story of the assassination attempt on Pres. Garfield more than 100 years ago is the medical treatment he received in the months after he was shot. Joseph Lister had recently shown that antisepsis [sterile conditions] greatly reduced infections, so doctors throughout Europe had already widely started using carbolic acid and other practices. But Garfield's doctors repeatedly poked into his bullet wound with unwashed hands and probes, causing infections that ultimately killed him.
The story is so so sad because it's so familiar. Healthcare-acquired infections still injure many thousands of patients. Evidence-based practices to prevent them often go unused.
The head physician treating Garfield even had the gall to bill the government the equivalent of $1 million in today's dollars for his treatment. This, too, feels far too familiar, as payers continue to pay exorbitant prices on our behalf for medical errors.
Advice: Read Candice Millard's excellent book, The Destiny of the Republic.
Read another president's medical story.
Tuesday, September 11, 2012
Friday, August 17, 2012
Sunday, August 5, 2012
Thursday, August 2, 2012
Wednesday, August 1, 2012
Thursday, July 26, 2012
Monday, July 9, 2012