She'd said Yes: Adverse drug events from a desire to please the doctor

Dr. Jeffrey Schnipper's story:
A Spanish-speaking woman came in to our hospital with very high blood pressure. She was on six different medications for it, she said, so we put her on a regimen of medications that was close to that, and that bottomed out her blood pressure! (I see something like that at least once a year.) This must have been the first time her body was actually seeing all those meds. I'd asked her in my Spanish – I'm pretty fluent – and she'd said Yes, she had really been taking all of them. I asked our hospital pharmacist to contact her community pharmacy, at Walgreen's in town, and we realized that one of the meds, she hadn't been taking for two months. Another one, she hadn't been taking for four months. A third medication, she was taking about two-thirds of the time (in other words, she was filling a 30-day prescription on average every 45 days). One medication prescription had never been filled at all. The two most costly medications, she HAD been taking faithfully. When we asked her again about her medications, showing her what we now knew, she admitted that she couldn't always afford her medications, so didn't fill all the prescriptions on time. She admitted to occasionally forgetting to take them. She also admitted that she didn't really know which medications were for her blood pressure. Each time she had gone back to her primary care provider with poorly controlled high blood pressure, her doctor had added another medication to her regimen.

She really needed TWO medications, IF she'd actually take them. So we backed off to two or three, choosing once a day, relatively inexpensive medications, which controlled her blood pressure really well. We also gave her a pill box and a refill reminder calendar to help her remember to take her medications and refill her prescriptions on time.

Advice: Tell your doctors the truth; don't tell them what you think they want to hear. If you have a problem with drugs being too costly, having side effects, occasionally missing doses, or you can't get to the pharmacy, tell them, and hopefully they can work out something that suits you better.

Read another story on a patient’s non-compliance.

Thanks to Dr. Jeffrey Schnipper for the source interview.

Recent Progress by Patient Activists: Headlines

About 50 patient activists and advocates convened at the IHI Forum for a Leadership Summit in Orlando in early December 2010. We drafted a mission of broadening our coalition to measurably and continually reduce medical errors. One month later, 42 of us participated in a reunion conference call. Here are some of the headlines of the recent progress mentioned in that call on January 8 by the participants. Bravo to these patient activists!


Kathleen Clark: I've been invited to join the Ethical Pathways Task Force at the regional medical center in my county, which will be composed of hospital and clinic leaders and community representatives, which will "study/converse/explore/learn together toward a goal of making recommendations for 'ethical pathways' (i.e. organizational structures, processes, and practices) that embed ethical consciousness and deliberation through the entire healthcare system."

Alicia Cole: This Tuesday I start my first class at UCLA, taking Health Law and Compliance! Also-I will be starting an Advocate Support Group to help those who would like some encouragement and assistance dealing with the issues/frustrations of being a Healthcare Warrior. The group will be confidential. If you are interested please email my your name, address and phone number.

Ken Farbstein: Through my work leading the Consumer Health Quality Council of Health Care for All, in December, the largest insurer in our state, Blue Cross Blue Shield of Massachusetts, informed their 900,000 beneficiaries via their e-newsletter that IF they are hospitalized and their condition deteriorates, they or a family member can call for a Rapid Response by specially trained hospital staff to intervene and rescue them promptly. More information can be found at Patient Safety Blog.

Dan Ford: Continuous reminders to and pushing providers regarding quality and patient safety through my work as a health care executive search consultant and currently as a board member of ISMP (Institute for Safe Medication Practices).

Regina Holliday: I continue to work on public awareness about patient rights. Since our meeting of last month, I worked with TMIT to spread awareness of the importance of access of the medical record through a short video called "Remember the Hollidays". Voice of America put out a written piece and a video about our patient access story as well as my Patient Safety paintings. In January, I am putting together a social justice camp to introduce the health crowd to the social justice crowd in DC. I will be filming a segment with Families USA that should air before the President later this month.

Libby Hoy: January 1, 2011 marked the launch of Patient & Family Centered Care Partners. An organization of healthcare providers, administrators, patients and families who are committed to partnering to improve the quality, access and safety of healthcare. Get more information here.

Kevin Kavanagh, MD: Two Op-Eds have been published recently:

In the Lexington Herald Leader on hospital-acquired infections, and

In the Courier Journal on the High Rates of Insurance Increases.

Alan Levine: My "headline" would be the need to improve the performance of state medical boards in protecting the public from questionable/incompetent doctors.

Mary Ellen Mannix: Over a year and a half of work as the sole consumer representative panelist & writer on a clinical workgroup ended January 3, 2011. The American Academy of Otolaryngology - Head & Neck Surgery (AAO-HNS) published the first, national evidence based guideline on Tonsillectomy in Children co-authored by myself and a transdisciplinary team of clinicians.

Armando and Victoria Nahum: Safe Care Campaign has launched a new patient safety / advocacy site focusing on the prevention of medical errors called Patient Safety Partnership. If you would like to be listed as a resource within the site, please email Armando Nahum at anahum@safecarecampaign.org. with your area of focus so that we can highlight your organization to patients seeking your area of specialty.

Mary Ann Peugeot: I have presented a summary of the Conference to the Vanderbilt Patient & Family Council on Tuesday and expect to meet with the Chief Nursing Officer in early January. I am also working with Lisa Morisse on a possible seminar on Patient & Family Care.

Patty Skolnik, Citizens for Patient Safety… current project Patient Advocacy Training: "Finding Your Way Through A Safe Healthcare Journey;" Courses being given at hospitals and sponsored by hospitals. New updated medical journal with appendix from The Empowered Patient Coalition.

Trisha Torrey: My new book was published and might be of interest to those on the call: The Health Advocate's Marketing Handbook. I'll put a link from the Wiki – but if anyone wants info on it, they can find more here.

Jan Vick: SC Voices is actively involved in SC CARES and SC Mission:Lifeline initiatives. My website is here. The Ann S. Perdue Independent Autopsy Act is providing more transparency, by more autopsies being done in South Carolina.

Mary Weiss: Several bioethics professors at the University of Minnesota are pressing their Board of Regents for an independent investigation in the case of Dan Markingson with the goal of making clinical research safe for enrollees.

Bart Windrum:
- accepted an offer from Front Range Community College to teach a series of workshops on how to advocate and revisioning end of life on their main campus and at several adult communities (single family middle aged and elder continuum of care) they program for
- developing a hospital nurse survey, to launch Q1 11, intended to gain insight into the viewpoints and needs of hospital nurses with respect to patient-family proxy activities
- refined website and materials for greater emphasis on speaking
- elevated brain levels and writing output.

$52,000 for headaches: Multiple wrong-drug errors

In his fine essay in the New Yorker magazine this week, Dr. Atul Gawande described one woman as an example of a high-cost patient. She is a young migraine sufferer with diabetes, age 25. She had visited the E.R. about every ten days, i.e., 29 times, in a ten-month period, compiling bills of $52,000. She had faithfully filled her prescriptions, not missing a single renewal.

She'd take her medicine, but it wasn't working. When the headaches got bad, she'd go to the E.R. or to Urgent Care. The doctors would order CT scans and MRIs to ensure she didn't have a brain tumor or aneurysm (a blood-filled balloon-like bulge in a blood vessel), give her a narcotic injection to temporarily stop the headache, renew her prescription for imipramine if needed, and send her home. The next time she had a migraine, she'd go to the E.R. again and see the doctor then on duty, repeating the pattern. She wasn't having a primary care physician try different medications systematically to figure out how to prevent or limit her migraines.

She is an employee of a company that pays for her health care. At that company, like most, a very small fraction of patients consume a very disproportionate share of all healthcare expenses. The E.R. is the wrong place to treat people with a chronic condition like hers.

Three kinds of people could help her escape this agonizing pattern: medical providers, her employer, and she herself. First, the E.R. doctors might well have recognized her as one of their "frequent flyers." It's a shame none of them helped her get a primary care provider. (That would have gotten her better care, reducing costs by cutting the hospital’s E.R. revenue.) Second, the employer might have recognized that her medical care was poor. Indeed, the employer had hired Verisk Health to analyze their costliest patients' care, and Verisk’s research director discovered the problem in the woman’s pattern of care. It's not clear from Gawande's essay whether the unfortunate woman eventually received better care as a result of the data analysis. Third, the woman herself, or a friend, family member, or other patient advocate might have realized that her medical care was poor. Lacking that, the woman apparently took for granted that suffering in this way was her lot in life. She didn't think to advocate for herself.

Advice: If you're limited by poor health, ask an advocate if anything can be done to make your life easier.

Read another story on migraines. Thanks to Dr. Atul Gawande for the source essay in the New Yorker of January 24.

Without a single E.R. visit: The Special Care Center

Dr. Atul Gawande's description of the morning huddles by an innovative medical practice:
The Special Care Center in Atlantic City, New Jersey houses an experiment started in 2007 by the health-benefit programs of the casino worker's union and AtlantiCare Medical Center, the city's two largest employers.

Dr. Rushika Fernandopulle runs the clinic just for workers with very high medical costs. A staff meeting each morning reviews the medical issues of the patients on that day’s appointment books. Clinicians popped open their laptops and pulled up their patient lists together. A full-time social worker and the receptionist joined the doctors and nurses. Outnumbering them all were eight full-time "health coaches" from the patients' communities.

In 45 minutes the staff ran through everyone's patients. They reviewed the requests that patients had made by email or phone, and the plans for the ones with appointments that day. Staff made sure that all patients who made a sick visit the day before got a follow-up call within 24 hours, that every test was reviewed, and that every unexpected problem was addressed.

Most patients required no more than 10 seconds. Mr. Green didn't turn up for his cardiac testing or return calls about it. "I know where his wife works. I'll track her down," the receptionist said. Ms. Blue is pregnant and on a medication for high blood pressure that's unsafe for pregnant women. "I'll change her prescription right now," said her doctor, and did so.

Other patients required longer discussions. A middle-aged heart-disease patient's recent blood tests showed worsening kidney failure. The team decided to repeat the blood tests that morning, organize a kidney ultrasound in the afternoon if the tests confirmed the finding, and have him seen in the office at the end of the day.

A staff member read out the hospital census. Of the clinic's 1200 chronically ill patients, just one was in the hospital, and she was being discharged. The clinic's patients had gone four days without a single E.R. visit. On hearing this, staff cheered and broke into applause.

Read another story by Dr. Atul Gawande.

Thanks to Dr. Atul Gawande for the source article in the Jan. 24 issue of The New Yorker.

When you have to go there: The medical home

Robert Frost wrote, "Home is the place where, when you have to go there, they have to take you in."

The medical home is being highly touted. But be careful: some are much homier than others. One key consideration should be their evening and weekend hours. If they're not open for you then, they're not a home by Robert Frost's definition.

In the Boston area, Westwood-Mansfield Pediatrics, for example, offers visits until 8 pm on four weekdays, and is open on Saturday and Sunday mornings.

Read another story on the medical home.

Thanks to Dr. Lester Hartman for the source interview.

Unspicy spicy noodles: Imaginative hospital food

Executive Chef Pnina Peled at Memorial Sloan-Kettering Cancer Center in New York City faced a challenge. A young cancer patient had a craving for a unique food: "unspicy spicy noodles." So Pnina came in on her day off with a stack of cookbooks, and concocted a whole-wheat sesame spaghetti dish with sesame oil and green beans that she'd chopped fine to look like scallions.

Another young cancer patient's mother, Valerie Ramo, became convinced that Pnina had been crucial to her daughter Joely's recovery from severe aplitic anemia. Doctors had expected that Joely would need tube feeding after her bone marrow transplant. Instead, Pnina found a way to make tasty substitutes for pressed turkey and cheese sandwiches Joely asked for, a combination of strawberry daiquiri and pina colada mixers, and a "takeout" pizza in a pizza box. Valerie said that Joely ended up not needed the intravenous nutrition because Joely liked Pnina's food so much.

Now an outpatient, Joely says she looks forward to her doctor's appointments several times a week because she can eat lunch at the hospital.

Read another story on uniquely tailored healthcare.

Thanks to Shivani Vora for the source article in the New York Times of January 16.

Wow! They do care: A patient-centered medical home

Dr. Lester Hartman of Westwood-Mansfield Pediatrics sent out an email message to the parents of his patients, as part of his new initiative to get to know his patients. He is trying to get to a four-star rating on knowledge of patients by the doctor, according to patient surveys conducted by Massachusetts Health Quality Partners (MHQP).

He asks the parents, "What is important for us to know about your child?". His staff then enter the answer into the electronic medical record, in a prominent yellow PostIt area on the computer screen.

If the parent has said the child is needle-phobic, the nurse will call the parent before the visit, asking whether to give the shot at the start or end of the visit. The parents say, "Wow! They do care!"

Read another story on a patient-centered medical home.

Happy New Year: It's your medical record, but you can't see it

Two of my encounters with the healthcare system yesterday ranged from the sublime to the ridiculous. First, the sublimely good one: I went to our veterinarian's office to buy some toothpaste for my dog. When I asked for it, they asked my last name. I was given the toothpaste, and I paid for it. With the receipt, the clerk handed me a one-page printout listing the dates for Jackson's next well-dog checkup and the next three years of immunizations, with his photo and name, address, and owners at the top of the page. I was delighted: without my even asking, they gave me tailored information to keep my beloved pet healthy.

Then, later in the afternoon, the ridiculous. I brought another beloved pet, my daughter, to see a sports medicine doctor for a minor issue. I asked the clerk to see her medical record. They couldn't give it to me. Why? For privacy reasons. Whose privacy?! Well…it's policy, so we can't. Why did I want it? To do my homework in advance, and to save the doctor's time during the appointment. Following their procedure, I filled out a paper release form, to be handled by Medical Records. Could I FAX them the release, and have them FAX me the record? You'd need to call Medical Records for that. OK; I called, but could only get a recording that said they'd need 7 to 10 days to mail the doctor's progress note to me. I talked to the Practice Administrator. I couldn't get my daughter's record in advance, nor could my daughter. Well, whose record is it? It's yours, but our policy says you can't see it. Who set the policy – the Director of Nursing? No. The CEO? No, a committee.

They had me; I was stumped, and we both knew it. Those were the magic words: "policy," and "committee." That meant logic and reasonableness wouldn't matter.

Advice for a New Year's resolution for dealing with a very old-fashioned medical system: To get "your" medical record, either keep a copy of the doctor's last note about your visit, or ask your doctor's Medical Records unit, two weeks in advance, to send it to you.

Read another story on my dog's medical record.

They'll be godmothers to thousands: Pulse oximetry for newborns

On Oct. 13, Kathleen Sebelius, the Secretary of the U.S. Department of Health and Human Services, sent a letter formally recommending that hospitals perform pulse oximetry screening of newborn babies. This followed the formal recommendation of the Secretary's Advisory Committee for Hereditable Disorders in Newborns and Children, which had met a month earlier. Pulse oximetry is performed via a painless clip (imagine a soft clothespin) on the baby's foot, to measure the oxygen in their blood.

Sebelius' recommendation was made on the ninth anniversary of the death of Mary Ellen Mannix’s son, James. Mary Ellen has become an influential patient advocate since then, and participates on the advisory board of the (newly born) Newborn Coalition.

The Newborn Coalition and the mission to get pulse oximetry as a recommendation on the SACHDNC were spearheaded by Annamarie Sarinaan. Annamarie's daughter, born with a heart defect, got good, error-free care, and survives.

Bravo to Annamarie and Mary Ellen, who will soon become virtual godmothers to the babies who will be healthier as a result of their work!

Advice: Forward this to your friends who are expecting a baby, and have them send this to their obstetricians.

I was one of 99: Hepatitis from injections

Evelyn McKnight's story:
In over 45 known outbreaks during the last twelve years, patients have been the victims of syringe re-use. I was one of 99 Nebraskans infected with hepatitis C in 2001 while receiving treatment for cancer. Syringes were reused, and a saline bag was misused. And ours is not an isolated incident. Over 150,000 Americans have been notified during the last decade that they have been put at risk for infection while receiving medical treatment. Infection control by ambulatory surgery centers is described by Dr. Melissa Schaefer and her colleagues in an article this month in the Journal of the American Medical Association.

Our research led me to discover inadequate level of protection for patients caused by widespread failure of health care providers to follow fundamental, basic injection safety practices. Astonishingly, these unsafe practices continue.

We started the HONOReform Foundation in 2007. Our vision is a nation in which health care providers always follow fundamental injection safety practices that are designed to protect all patients each and every time they receive an injection.

We are pleased to announce that HONOReform Foundation, along with the Southern Nevada Health District, launched our Compassionate Response Toolkit on December 1, 2010, in Las Vegas. Providers throughout the area will be able to give this helpful resource, written from the patient perspective from our year-long research, to anyone diagnosed with viral hepatitis. It is just a start for our toolkit. It will be available online to all patients…and will be offered to public health departments and other organizations.

I invite you to join us in our efforts—testifying and working with federal and state lawmakers on legislation to protect patients, helping public health officials prevent and respond to outbreaks, and providing inspirational and motivational compassion and support to people across the country who have been affected by unsafe injection practices.

Please visit our web site, HONOReform.org, and please contact me anytime, evelyn@HONOReform.org.

Read a daredevil’s hepatitis story.

The patient's decision: Data on dialysis facilities' outcomes

Roberta Wager went on dialysis in the early 1980s. "I had nothing, no frame of reference," for choosing a dialysis facility, she said.

But now, dialysis patients can have a much more informed choice. Today, ProPublica made available extensive information on the quality of dialysis facilities across the U.S., in an easily searchable database.

"It gives you a snapshot of what a clinic is about," said Roberta, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "It should be the patient's right and the patient's decision to have [the numbers]….This is your life. Wouldn't you want to have everything in your favor?"

Almost 400,000 Americans depend on chronic dialysis to do what their failed kidneys cannot. Their number has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.

Advice: Dialysis patients should look up the outcomes of local facilities on the database, interview current dialysis facility staff, tour the facilities, and gather information about staff members' experience level and turnover rates.

Read another dialysis story from this blog, or read ProPublica's full story by Robin Fields.

The cult that cures: Listening to stories

"It's not surprising that storytelling became so fundamental to the culture of A.A. What is more interesting is what it contributes to recovery. 'It's just confession,' you might think, or 'It's just free psychotherapy.' And that's partially right. But it's not just confession or psychotherapy when everyone in the room is doing it, and it turns out that listening to stories is just as important – and maybe more important – than telling them. Stories break through loneliness. And perhaps the worst thing about alcoholism - and the reason I tried to kill myself that night – is the conviction that you deserve your loneliness, that no one needs to be cast out more than you do."

Advice: In this holiday season, listen to and tell lots of stories with others.

Read another story about the therapeutic fellowship of A.A.. Thanks to Clancy Martin for this excerpt from his warm and poignant article in the January 2011 issue of Harper's Magazine, ”The Drunk’s Club: A.A., the cult that cures”.

Woodstock in Kissimmee: IHI's National Forum Leadership Summit

In November 2000, a very pregnant woman entered a Boston teaching hospital to have her labor induced. "Suzanne" experienced a series of medical errors that resulted in the loss of her fetus and the rupture of her uterus. This required a hysterectomy and an 18-day stay in the surgical intensive care unit.

Five months later, after the insurer, Harvard's Risk Management Foundation, had settled with the family, and after the hospital's public apology, RMF approached the hospital, asking them to adapt Crew Resource Management to safeguard obstetrics. Physician leaders did so. In fact, the medical staff was so successful at bringing this form of team communication to the Obstetrics unit that the number of high-severity adverse events fell by 62%.

This is a case in point of how tragedy can sometimes ultimately lead to improved patient safety. That may not happen often, as it requires brave and dedicated leaders at the top and middle levels of a hospital, and a particular type of dedication by clinicians. Most hospitals lack leaders like Jim Reinertsen, Paul Levy, and Stephen Pratt. Their leadership was key and their receipt of the John Eisenberg Award was well deserved.


Two weeks ago, at the National Forum of the Institute for Healthcare Improvement near Orlando in Kissimmee, Florida, I had the pleasure of meeting Paul Levy and Dr. Pratt, and seeing Dr. Reinertsen again. Along with the heads of the Cautious Patient Foundation, Paul had charmed his fellow hospital CEOs into sponsoring 50 patient activists from around the country to participate in the Forum. I was one of the lucky ones who'd been chosen to attend the Leadership Summit.

For we patient advocates, it was our Woodstock, a mass intoxicating love-in that convened widely scattered like-minded young-at-hearts who are critical of the Establishment. I expect to tell many of our intense and redemptive stories in this blog over the next few months. Many of us hope to turn our tragedies into improvements as solid, life-giving, and lasting as the use of CRM in Obstetrics.

I'd like to salute the leaders of Boston's Beth Israel Deaconess Medical Center, and the doctors who joined us in the Leadership Summit, including some who have harrowing stories as patients: Carl Flatley, Julia Hallisy, Kevin Kavanagh, Gil Mileikowsky, Cari Oliver, Kavita Patel, and Stephen Pratt.

Read another crew resource management story, or read Stephen Pratt's article of Dec. 2007 in the Joint Commission Journal on Quality and Safety.

70% don't know: Carl Flatley's story on sepsis

Watch this short video video, prepared by Carl Flatley, the founder and Chairman of the Sepsis Alliance.

Read another sepsis story, or see the Sepsis Alliance website.

Which they can take to market: The Hunger Site

Today, on Thanksgiving, I'm thinking only about food, not about patient safety. You can get food to hungry people, for free, every day. The Hunger Site, at http://www.TheHungerSite.com, enrolls advertisers who will pay for food for a starving person, in exchange for the honor of showing their ad to you briefly on the website. You can click there as often as once a day. When you click, the money generated goes directly to Mercy Corps, Feeding America, and Millennium Promise.

Here's the story of how the aid reached Zainbon in the Aceh province of Indonesia:

Zainbon is a 37-year-old rice farmer with a black baseball cap perched atop her pink headscarf. Her husband mans a desk as a temporary, low-level bureaucrat in the district transportation office nearby, but still they struggle to find the rupiahs each month to get by. She pulls at her scarf, explaining how they stretch six or seven dollars a day across the needs of cooking staples, school fees, fuel and now, in the fall planting season, fertilizer and rice seed. A Mercy Corps survey in the area recently found staple food prices climbing between ten and twenty-five percent, on top of fuel prices that jumped forty percent earlier this year.

"This is hugely important for us — the staples are rising and the salary isn't keeping pace," Zainbon says. "What about others whose husbands are just farming? They're struggling even worse."

This worldwide crisis is striking an area just starting to find its feet again after a vicious cycle of calamity. For decades, a rural separatist conflict kept many farmers out of their rice fields and fruit plantations for fear that they would be caught in the crossfire. Then in 2004, the Asian tsunami sent a wall of water up to thirty feet deep and flattened everything in the area, including the entire village of Naga Umbang.

With the houses now rebuilt, the rice paddies cleared of debris and new water buffalo roaming the yards, villagers are now teaming with Mercy Corps to strengthen their rice farming techniques and improve crop yields. And with food prices bearing down on locals, it could't come at a better time.

"We need to modernize," Zainbon said through a translator. "We're already thinking about when Mercy Corps leaves here, and this transfer of knowledge is one way we can build independence. Money from an NGO would go quickly, but knowledge and technology sticks in your mind."

The improved techniques are aimed at boosting incomes. Typically most of the rice harvest in villages like this goes to feed families. But if farmers in Naga Umbang can grow more efficiently, they will begin to see surplus rice from the same backbreaking labor they currently put into the season. And they will hopefully have the resolve to plant a second crop each year, which they can take to market in nearby cities.

Advice: Please click on The Hunger Site's "Click Here to Give – It's Free" button today, and every day. The site is run by someone I know and trust.

Thanks to the Mercy Corps for providing this story, which is reprinted here.

I thought this was an odd response: A father’s intuition on misdiagnosis

John James' story:
Early in my son's failed diagnosis I told his lead cardiologist that I could get a previous electrocardiogram [which produces graphs of the heart's electrical activity over time] done a few months before my son's non-fatal collapse. That cardiologist wasn't interested in this previous EKG. Since I carried a small card in my wallet with my EKG, I thought this was an odd response from the cardiologist if he knew what he was doing. My intuition said I need to find another hospital for my son. Unfortunately, I did not follow my intuition and my son lost his life to incompetent medical care. The changes in my son's EKG would have pointed the way to the proper diagnosis, which was acquired long QT syndrome [a rare heart condition].

John James' Advice: If I could tell patients only one thing it would be to follow your intuition. If you think there is something wrong where you or a loved one is being diagnosed or treated then take charge, get a second opinion, or just get out.

Read a happier story about the role of a patient’s intuition in choosing medical treatment. Thanks to John James for this story.

Click here to get John’s book and e-newsletter subscription.

How cool is that?: the Personal Health Record

The administrative director of Patient Always First has an 88-year-old father who lives in another state. After a lengthy hospital stay about a year and a half ago, he returned to his home but was no longer able to live alone. Different aides come in to help him as well as a physical therapist who comes to see and work with him twice a week.

Before Betsy used the PatientAlways First Health Record (PFHR), she would ask her dad, “are you taking your medicines?” and he would always say “yes.” His aide would also say “yes, I give him what he needs.”

She decided to start a PFHR for him. She called his pharmacist and got a list of his medicines, and then she called her father’s doctor, and asked if these medicines were the ones he should be taking. (She faxed the list to the doctor’s office.)

(Doctors would be glad to check a list of medicines like this because, obviously, they want you on the medicines that they want you on.)

So imagine her surprise when she learned that her father was still taking several medicines that the doctor had discontinued and replaced with different prescriptions. The doctor had no way of knowing that his patient was still taking the old medications as well as the new ones. (A real-life scenario of “medications: just plain mix-ups.”) The pharmacy continued to fill all the re-ordered prescriptions, old and new, and because so many different people were coming to the house to help, the aides weren’t exactly sure what he was supposed to be taking. The doctor was able to recognize the errors and cross out the medications that were no longer to be given.

Betsy then put her dad’s correct medications into the PFHR, and added his diagnoses, allergies, important contacts, etc. as she remembered them and as she asked him to recall. She printed out a copy of the PFHR and it sits on top of the medicine box so that anyone coming in to help can just look at the list and know what medicines to give.

(Remember, just do it. From your memory, it’s going to be better than what your doctor has had time to organize.)

Then, since the PFHR has this really neat feature where you can let other people access the record, or add to it (only with your permission), she allowed the physical therapist who visits her dad to have access to add to the record. So now, when the physical therapist comes, he types the date, vital signs, and other information about her dad’s treatment and condition that day into the record. And Betsy can see all that information when she logs on.

So Betsy can have some peace about helping her father long-distance like this- she really is checking in and helping with his health.

And if her dad should need to go to the emergency room again, then his aide could bring the printed-out PFHR, or Betsy could fax it to the ER, or the ER could even access it online themselves (if Betsy or her father gives them the username and password.)

Now, how cool is that?

Advice to Sandwich Generation women who are caring for a distant parent: Get a personal health record for them.

Read another personal health record story, or read Dr. Oliver’s blog.

Thanks to Dr. Cari Oliver for her permission to reprint this story from her book, “Cautious Care: A Guide for Patients.”

To complete the miscarriage at home: A lack of discharge instructions

Rene's story:
Years ago I was diagnosed by more than one fertility specialist as being infertile because I had only one fallopian tube that was totally blocked. I lost my other fallopian tube in 1990 when I had a tubal pregnancy. To add to the odds stacking up against us, my husband Arthur had a low sperm count. We were told our only alternative was in vitro fertilization (IVF) which was not affordable. Unfortunately most insurance companies don't pay for this procedure, so we didn't worry about it. God had blessed me with two daughters before I got married that Arthur legally adopted at a young age. Our daughters were all grown up and out of the house. We were living life to the fullest without the responsibility of being tied down to children, when suddenly after seventeen years of marriage and not using a contraceptive I became pregnant with our son, who was conceived on February 15, 2008, just one day after our seventeen year wedding anniversary. What an anniversary gift! The doctors still can't explain how we conceived our love baby.

I had prenatal care early in the pregnancy. Then in my second trimester, my water bag broke, and I went to the hospital here in Louisiana. I was sent home to complete my miscarriage with no discharge instructions. I was told I would be going home to pass tissue the size of a bar of soap. We left the E.R. at 5 am, on Arthur's birthday, and delivered our son at home 45 minutes later in the toilet. Arthur grabbed baby Trey who was still alive, breathing and gasping for air. Within minutes Trey stopped breathing and went limp in Arthur's hands. Our love baby was gone, we would have never left the E.R. if we were told it was a possibility our baby would be still alive.

It was a nightmare! They hadn't told me that could happen. There's no way they can make me believe that was normal. But that's what they said at the medical review panel, and that it was not preventable.

At the deposition, the E.R. doctor had tears in his eyes, and said, "I didn't realize this would happen," even though his lawyer was trying to tell him to shut up. But my Ob Gyn doctor could care less! She just sat there, twirling the ice in her glass, looking at me with such bitterness. If she'd said, "Rene, I'm sorry, I made a mistake," it would be different. But to pretend that I'm the one who has a problem, really irritated me. I went to this doctor because I trusted her, she was the best. She said she would take care of me and she didn't. There should be a law to prevent hospitals from discharging people without instructions when they most need them!

Rene's Advice: All week long my body was telling me something. Everybody knows their own body. If something's not right, it's not right. If you feel uncomfortable about a procedure, ask questions. Realize that the doctor is a man and not God, and ask questions about what they're doing, and why. If your body is giving you warning signs, if the doctor can't see you, get a second opinion.

Thanks to Rene McCoy for sharing her story.

Read another story on a premature birth.

I was not told of the complications: Botched Lasik Surgery

Caprice’s story:
I went to the eye center to see if I would be a candidate for Lasik. I was not told of the complications other than the obvious, I was never told of the permanent side effects (reading glasses). I was assured that I could attain 20/20 with the surgery. After my first surgery the doctor left "debris" under the flap of the right eye, and my eye became infected. I had excruciating headaches and the antibiotics did not help.
I went back in, they had to lift the flap and remove the debris, I was not told this would change the prescription of the eye. After removing the "debris" he left behind in the initial surgery my eyesight in my left eye was 20/40 and it became 20/100 in the right. I was not allowed to use any kind of corrective lenses at this time, again I was suffering severe headaches due to the disparity between the vision in both eyes. Unable to see adequately I subsequently lost my job. I went in to have the right eye corrected again.

After this surgery both eyes were 20/40 and I failed my eye exam for my drivers license. I was told I would have to wait a year before they could go back in and "enhance my vision. One year later I received a notice in the mail advising me it was time to come in and have my eyes checked. I returned to their office only to be told I would be charged for the visit. I was indignant and told them it was a follow-up from the previous surgeries, that they had not given me 20/20 and I would not pay. I was escorted back for more tests on my eyes. I was told they could get me 20/20 this time and i asked would this affect my near vision I was assured by two technicians it would not. I was scheduled for the "enhancement." After the "enhancement" surgery I discovered the doctor not only had left "debris" in the right eye he had also left some in the left eye as well. The field of vision in my right eye was greatly obstructed.

Not wanting to allow this "doctor" to touch me again I went to a specialist in Dallas only to discover not only had the doctor left "debris" in my right and left eyes, he had left creases in the flap of the right and ruined the lens in that eye as well! I got astigmatism in the left eye and I have to permanently wear reading glasses all the time. The specialist spent 45 minutes cleaning out the "debris" and "ironing" out the creases. I want to tell the world what they did to me!

Read another story about elective surgery. Thanks to Caprice for sharing her story.

When you buy a car: Inappropriate surgery

Here's an idea that should both empower consumers and nudge costs down.

When you buy a car, critical information for this major purchase decision is immediately available, and clearly and prominently displayed on key features of the product, e.g., the miles per gallon. The decision of whether to have surgery is just as important, but information as clear and objective as that is usually absent.

The National Priorities Partnership is a broad group of experts, convened by the National Quality Forum, who have agreed that certain operations are often unwarranted.

Patients who are considering a coronary artery bypass graft (CABG), hysterectomy, knee/hip replacement, prostatectomy, percutaneous transluminal coronary angioplasty (PTCA), or spinal surgery should carefully consider beforehand whether the surgery is appropriate for them. To enable them to do so, patient advocates should find out and tell them the:

Survival rate;

Identification and frequency of the most common adverse effect;

Fraction of patients who need the operation to be performed again;

Best alternative to surgery; and

Cost to be billed by the surgeon and hospital.


I wish I had this information when I considered surgery. A friend's father also would probably have wanted to know it, as it might have saved him from an ineffective operation that left him incontinent. When consumers learn this information, many will probably consider alternatives to surgery, which may well be less expensive.