From the other side of the stethoscope: Dr. Wendy Harpham

Wendy Harpham is a doctor of internal medicine, best-selling author, long-term cancer survivor and mother of three. Throughout her career, she has pursued her mission: "Helping others through the synergy of science and caring."

Born, raised and educated in New York, she moved to Texas in 1979 to complete her post-graduate training in internal medicine. In 1983, she opened a solo practice at Presbyterian Hospital of Dallas, where she combined the best of modern technology with old-fashioned caring. Based on her belief that well-informed patients do better and feel better, she developed teaching tools to educate her patients about their illnesses and treatments.

Dr. Harpham told her patients she'd care for them until she retired on her 80th birthday. But her dream was shattered in 1990 by her diagnosis of non-Hodgkins lymphoma. She was only 36 years old. Dr. Harpham has been in and out of treatment ever since.

With the same determination that marked her work as a physician, she has overcome the many challenges of life as a cancer patient. She has learned how to find hope when treatments aren't going well. How to make difficult treatment decisions. How to calm fear of recurrence. How to deal with chronic post-cancer fatigue. And how to balance hope and acceptance.

When ongoing illness forced Dr. Harpham to stop practicing medicine and redefine her career, she turned to writing as a way to continue to educate, comfort and inspire patients. From her useful perspective as physician-patient, she began sharing her hard-won insights and tips for getting good care and living as fully as possible.
With the publication of her first book in 1992, she coined the term "Healthy Survivor" and presented her three step approach to "Healthy Survivorship": (1) Obtain sound knowledge, (2) Find and nourish hope, and (3) Act effectively.

Her later books also made significant contributions to survivorship by discussing the notions of a "new normal" and "post-cancer fatigue," as well as offering the practical "Harpham Decision Tool" to help patients make wise treatment decisions. All Dr. Harpham's books blend scientific evidence-based information with practical philosophy.
In addition to her books and articles for patients, Dr. Harpham writes for a professional publication, Oncology Times. Her popular column—View From the Other Side of the Stethoscope—addresses common yet rarely discussed patient dilemmas and professional challenges in the care of cancer patients.

Dr. Harpham's lymphoma is in remission, but limited stamina prevents her from returning to clinical medicine at this time. So she continues to devote her energy to helping survivors through her speaking, writing (books, articles and blog) and activities as a patient advocate (member of steering committees, oversight boards and think tanks; interviewee on national shows such as The Today Show and The Oprah Winfrey Show; captain of Wendy's Eagles).

Advice: Look for a doctor who has seen the view from the other side of the stethoscope. And read Dr. Harpham’s new book, “Only 10 Seconds to Care: Help and Hope for Busy Clinicians.”

Read a story about another physician patient. Thanks to Dr. Harpham, whose biography is reprinted from her blog, WendyHarpham.com.

For all Massachusetts health care consumers: Testimony on the new Chapter 305 law

This was our testimony of Health Care for All's Consumer Health Quality Council before the Public Health Council, presented by Linda Burgess, Nicola Truppin, Deb Wachenheim and me:


RE: 105 CMR 130.000, Hospital Licensure, and 105 CMR 140.000, Licensure
of Clinics

Thank you for the opportunity to provide testimony on the regulations for
implementing sections of Chapter 305, the landmark cost containment and
quality improvement law. Health Care For All and the Consumer Health Quality
Council advocated for this law, and for these measures in particular, and we are
pleased to see steps being taken toward implementation.

The Consumer Health Quality Council is a coalition of Health Care For All. The
Consumer Council brings together Massachusetts residents who have been
impacted by poor quality health care and who are motivated by those
experiences to advocate for health care quality improvement. The members of
the Consumer Council want to work to ensure that what happened to them and
their families will not happen to someone else. The Consumer Council believes
that Chapter 305 will advance patient safety and health care quality for all
Massachusetts health care consumers.

Reporting of Serious Reportable Events and Infections
Many of our comments for both of these reports are similar, so you will see below
comments that apply to both reports and a few comments particular to one report
or the other.

Serious Reportable Events (SREs) are also known as "never events" because
these are events that should never happen in a health care setting. These
include events such as wrong-site surgery and wrong person surgery as well as
very serious medication errors and serious pressure ulcers. All together, there
are 28 events on the SRE list that has been established by the National Quality
Forum. While we all hope that these events are very rare, we know this is not yet
true. We applaud the steps that the Department of Public Health and the Board
of Registration in Medicine have already taken to track and reduce the
occurrence of these events. We believe the public reporting of SREs will not only
educate consumers about the fact that these events do happen and where they
are happening but will also prod hospitals to put in place preventative-based
systemic changes in order to reduce the likelihood of occurrence. We know that
the first hospital-specific report is due to come out in April 2009 and we plan to
do our part to educate the public about the report and how the information can be
appropriately used.

We also applaud the infection prevention, reduction and reporting work that has
been under way for some time under the direction of DPH and the Betsy Lehman
Center. A number of the Consumer Council members have been profoundly
affected by hospital-acquired infections and we look forward to seeing the first
public report on infections which will be released in April 2009, with the first
hospital-specific report coming out in the fall. We believe that these reports will
also both educate consumers and encourage improvement within hospitals.
Much needs to be done to prevent infections. Some practices such as hand-
washing are highly effective and inexpensive. And when compared to the cost of
treating or managing an infected person, prevention is inexpensive. We are
confident that public reporting will move hospitals and our health care delivery
system in the right direction. We hope to eventually see the SRE and infection
reports extended beyond the hospital and ambulatory surgery center settings to
include, for example, nursing homes.

Comments pertaining to reporting of SREs and infections:
According to Chapter 305, both public reports will be available on the website of
the Quality and Cost Council (QCC). The Consumer Health Quality Council is
available to serve as a consumer focus group as the website pages with these
reports are developed. We encourage the QCC, DPH, and EOHHS to undertake
a publicity campaign, which could include, for example, web postings and radio
and television public service announcements, to ensure that consumers are
aware of the existence of the reports and how they can access and use them.

• The reports should be easy to find, with a clear link from the homepage of
the Department of Public Health, the homepage of the QCC website, and
others.
• Reports should be available in languages other than English and
understandable to individuals with varying levels of health literacy.
• Reports should clearly illustrate the number of incidents and the health
care facilities’ responses to them. We would like to see the actual reports
include not just the numbers of SREs and infections that occurred at a
given hospital in a given year but to also show trend numbers over the
years for each hospital and to provide some information on improvement
efforts that hospitals have undertaken to reduce the SRE and infection
rates.
• Information should be available to consumers via the Internet but there
should also be other methods for accessing this information, for example:
o 1-800 phone number which consumers can call to find out
information about given hospitals;
o Require hospitals and clinics to have paper copies of the reports
on-site and/or to have computers which consumers can use to view
the websites.
• Public reports should be timely and not out of date, so that the information
is most useful to consumers and most accurately represents a hospital's
current standing.
• Reports should point out hospitals that report no incidents, or very few
SREs and/or infections. We are concerned that there may be
underreporting, especially initially, and we want oversight entities to be
aware of cases in which further investigation may be needed to ensure
that hospitals are complying with the law.
• The types of reportable SREs and infections should be regularly reviewed
by a task force to determine if the list of reportable events should be
expanded and/or revised. There should be at least one consumer
representative on any task force charged with this periodic review

Comments specific to the SRE reports:
In addition to reporting on the number and types of SREs that occur at each
hospital, we believe it would be useful for the report to also show the number of
SREs for each hospital for which related care was reimbursed and the number
for which care was not reimbursed under the nonpayment policy that is also in
Chapter 305. That will give the public a better sense of how many of the SREs
were and were not preventable. Finally, we encourage DPH and the Patient Care
Assessment (PCA) Program of the Board of Registration in Medicine to continue
to play an active role in rooting out and investigating SREs.

A comment specific to the infection report:
The initial public report on healthcare-associated infections will only provide
information on three types of infections. We strongly believe that the public
deserves to have access to information about many more infections. We know
that many more infections will be confidentially reported to the Betsy Lehman
Center and internally within hospitals. Some of those infections should be
publicly reported as well. Again, this will both allow consumers to make educated
choices as to where they get their care and drive hospitals even further to reduce
those infections that are publicly reported.

Nonpayment for Serious Reportable Events
The Consumer Council believes strongly that stopping payments for care needed
as a result of a preventable SRE will help to prevent the events from happening.
Medicare and other insurers have started taking steps in this direction, and we
applaud Massachusetts for being the first state to legislate this policy across all
hospitals. As suggested in the public reporting section, we recommend that a
task force be established to periodically review the list of SREs and determine if
the list of those for which care may not be reimbursed should be expanded
beyond the NQF list. This is especially important as Medicare, for example, is no
longer paying for services related to events, such as certain infections, that are
not on the NQF list.

Patient/Family Notification: The Consumer Council is very concerned that there is
no guidance in the proposed regulations regarding how to notify patients/family of
the occurrence of an SRE as well as how to notify about payment policies. It is
left up to each hospital to put together its notification policies and procedures. If
an SRE has occurred, a patient and/or family members may be in the throes of
dealing with the physical and emotional consequences of that event. Or, it is
possible that the patient/family may not be aware that an SRE occurred. Or the
patient could be incompetent and not capable of comprehending the information.
Or English may not be the patient's first language. Obviously much care must be
taken when notification of the SRE is provided.

• In addition to informing the patient/family of the occurrence of the SRE,
they must also be notified of any known risks or future harm that could
result from the SRE.
• Notification should consist of both written and verbal communication and
given in the language of the patient/family to make sure it is understood by
those most impacted.
• We also encourage DPH to require that hospital staff be trained in the best
practices for disclosing such information to patients/family members.
• An independent third party should be present for these disclosures who
can attest to what the hospital disclosed, when and in what manner.

Non-payment: In providing information to patients/family about the decision to bill
or not bill, this must again be in the patient’s language and must be written so
that those with varying levels of health literacy can understand it. Our hope is that
as healthcare facilities become more comfortable disclosing SREs and other
adverse events, there will be improvements in patient/provider communication
over all.

We would like to see DPH play a more active role in helping to determine if an
SRE occurred and if it was preventable, in which case related care should not be
reimbursed. Under the proposed regulations, it seems that the hospitals have
most of the control over determining whether or not to charge. They may have an
appeals process that has been negotiated with the third-party payer, but we
believe DPH should have an active role as well. Further, the consumer should be
able to appeal a decision, especially, but not only, if there is not a third-party
payer or there is a high deductible to be met, and that appeal should involve
DPH.

The proposed regulations require that the hospitals submit a Root Cause
Analysis report to DPH, the payer and the patient if they do decide to charge for
care related to an SRE. However, there is no requirement to do this if they do not
decide to charge. This must be required in both cases, so that patients are fully
informed and so that hospitals learn from their mistakes. DPH should also require
that the SRE is recorded in the patient's medical record.

There needs to also be some guidance regarding the length of time for which
care related to a preventable SRE is not reimbursed. Once the patient leaves the
hospital, there may be a need for follow-up care. The patient should not have to
pay anything for that care, whether or not they go back to the same hospital, and
they should be fully informed that they do not have to pay. And a third-party
payer should not have to pay for any related follow-up care if given by the same
or an affiliated institution.

Finally, once the regulations are finalized and implemented, we believe there
should be a public information campaign to ensure that consumers are aware
that this nonpayment policy is in place and applies across Massachusetts.

Patient and Family Advisory Councils
The Consumer Council is very excited about the requirement for hospitals to
establish Patient and Family Advisory Councils (PFACs). We have seen models
for how these PFACs can be extremely effective and valued entities within an
institution. Hospitals such as Dana Farber have developed PFACs that are called
upon to bring their voices to many different aspects of the institution's work.
Every hospital in Massachusetts should establish these vehicles for bringing the
voices of patients and family members to their work.

We also strongly believe that the minimal cost associated with establishing and
maintaining PFACs is more than made up for with increased levels of patient and
family satisfaction, both in terms of having their voices heard and in terms of
actually making a difference in the quality of care provided. Patients and family
members bring unique perspectives to the work of a hospital and those
perspectives are often not heard unless there is an established mechanism to
ensure they are heard. Health Care For All and the Consumer Council are eager
to play a role in working with patient and family advisors across all
Massachusetts hospitals as the PFACs are established. We want to work to
ensure that the PFACs are effective bodies and are not established without being
nurtured by their institutions.

PFAC Membership: The proposed regulations require that at least 50% of the
membership of a PFAC be made up of patients and family members. While we
are pleased to see the requirement that a majority of the members have the
patient/family link to the hospital, we are a bit concerned that up to 50% of
membership could in theory be made up of hospital staff. We would like to see
some language specifically stating that 50% of the group cannot be staff only.
Perhaps the language could suggest a certain ratio of patients/family members to
staff (for example, 3-4 patients and family members for every one staff person) to
ensure that the group does not become too staff heavy. Further, we would like to
see language stating that there should be at least a minimum number of patients
and family members on each PFAC, to ensure that they are not too small to be
effective. According to the Institute for Family-Centered Care, an ideal minimum
number of patients and family members on a PFAC is 12-15.

We would also like to see guidelines as to the demographics of the PFAC
membership. The PFACs should reflect the diversity of both the hospitals'
patients and the community it serves. We would like to see a requirement that
individuals can access the PFAC directly without having to go through hospital
staff or administration. This would allow patients/family members with concerns
to know they can directly talk to an individual or group that shares the consumer
perspective. We would also like to see a requirement that a hospital staff person
be the coordinator for the PFAC and be the liaison between the PFAC and
hospital administration.

PFAC Activity Publicly Reported: We request a requirement for public reports
about the work of the PFACs. We know that there is a requirement for hospitals
to report to DPH annually on the work of the PFACs but very few members of the
general public seek out DPH reports. We want to ensure that the public is aware
of the existence of the PFACs and of their work. Perhaps DPH could send the
annual reports to local newspapers and/or require hospitals to post them on an
easily accessible section of their websites as well as have them available to
patients/family upon request. Further, we request that DPH issue a report on a
regular basis (perhaps every other year) summarizing the work and
accomplishments of all PFACs across Massachusetts. This would be informative
for consumers and would allow the hospitals and PFACs to learn from one
another.

Implementation: The regulations as written require that the Advisory Councils be
established by September of 2009. If this deadline is extended, then we strongly
encourage DPH to establish benchmarks that hospitals must meet by certain
dates, with the goal of eventually having a full Advisory Council set up and
running effectively by a set date. The Consumer Council and Health Care For All
would be available to participate in discussions on what those benchmarks and
their associated dates should be.

Rapid Response Methods
The Consumer Council believes that the establishment of rapid response
methods that can be activated by patients and family members will provide an
important tool to those individuals who feel that they need immediate assistance
and are not being heard. A number of members of the Consumer Council believe
that they or their family members could have utilized a rapid response method
had it been available when they were receiving care. If patients/family are well-
informed about the criteria for activating the method, we are certain that it will be
a vital tool that will save lives, as has been seen in hospitals that do have this
method in place.

Education: Our comments relate mostly to education regarding the rapid
response method. Patients and family members must be fully informed, upon
admission, of the existence of the rapid response method, criteria for activating it,
and how to activate it. This should be done in the language of the patient/family
and in the most accessible way possible across levels of health literacy. Some
examples of ways to educate them are with posters in their room and showing a
video, in addition to having hospital staff speak to them directly about the
method. Further, hospital staff need to be fully informed not only about the
method and the criteria, but about the fact that patients/family members can
activate the rapid response method and that staff should feel comfortable with
the fact that patients/family can do this. We do not want staff to see this as a
burden placed on them but rather as a potentially life-saving intervention.

Reporting: We would also like to see a reporting requirement so that the
Department of Public Health and the public, as well as the hospitals, can assess
how often the methods are used, if they were activated by patients, family or
staff, and if the activation helped to avert a potential problem. This reporting will
allow learning by everyone involved so that they can work to make these rapid
response methods as successful as possible.

Record Retention
Health Care For All would like to see language in the proposed regulations on
record retention and destruction requiring the health care facility to attempt to
contact a patient before destroying his/her records.

Thank you again for the opportunity to comment on the proposed regulations.
Health Care For All and the Consumer Health Quality Council look forward to
playing an active role in ensuring that implementation of all of these pieces of
Chapter 305 are a success. Please contact Deb Wachenheim, Health Quality
Manager at Health Care For All, at 617-275-2902 with any questions.


Ken Farbstein, President, Consumer Health Quality Council
Deb Wachenheim, Health Quality Manager, Health Care For All

Advice: Help create and shape new laws to improve patient safety.

Read earlier testimony on patient and family councils.

She has taken off her name tag: Hand-washing in hospitals

The WBUR radio station played a story this morning about hospitals' efforts to encourage staff to wash their hands frequently, to prevent hospital acquired infections.

At one Harvard teaching hospital, a nurse observes staff on the Cardiac unit to see who is washing their hands and when. What makes the nurse sure that they won't know they're being watched? Oh, she has taken off her name tag - but still wears the standard blue nurse's uniform and white coat. For ten minutes, she notes who washes their hands. Meanwhile, the Cardiac unit nurses hurry around the unit, probably aware of the one nurse, not from their unit, who isn't hustling around. Surprise! –everyone dutifully uses the hand sanitizer while she watches them. Does this spot-checking really raise compliance with hand-washing rules? Or does it just provide a reassuringly high rate of hand-washing?

A more reliable approach uses unobtrusive measures. Indeed, that ("Unobtrusive Measures") was the title of a book by Eugene Webb et al, written back in 1966. Such unobtrusive or “non-reactive” measures probably give a more honest view. At Beth Israel Deaconess Medical Center in Boston, for example, staff instead measure the volume of hand sanitizer used.

Advice to patient advocates: Bring a bottle of your own hand sanitizer, and keep it on the patient's bedside table as a gentle reminder.

Read another story on blue uniforms and hospital cleanliness.

Thanks to Sacha Pfeiffer for the source story on WBUR today.

The Patient Safety Blog Bookshelf

Over the last year or so, I've mentioned many books in Patient Safety Blog posts. These might be useful for a course syllabus or reading list:

Addiction, by Dr. Vatsal Thakker

Better: A Surgeon's Notes on Performance, by Dr. Atul Gawande

Broken: My story of addiction and redemption, by William Cope Moyers

Dartmouth Atlas of Healthcare, by Dr. John Wennberg et al

Diabetes Burnout, by Dr. William Polonsky

Fight Your Insurance Company and Win: Secrets of the Insurance Warrior, by Laurie Todd

First Patient, by Dr. Michael Palmer

First Year Parkinson's Disease, by Jackie Hunt Christensen

Havens: Stories of True Community Healing, by Leonard Jason and Martin Perdoux

How Doctors Think, by Dr. Jerome Groopman

Intern: A Doctor's Initiation, by Dr. Sandeep Jauhar

Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia, by Dr. Thomas Graboys and Peter Zheutlin

My Mother, Your Mother, by Dr. Dennis McCullough

My Stroke of Insight, by Jill Bolte Taylor

Navigating the Healthcare Maze: What You Need to Know, by Jeffrey Knott

Nordie's at Noon: The Personal Stories of Four Women "Too Young" for Breast Cancer by Patti Balwanz, Kim Carlos, Jennifer Johnson, and Jana Peters

On Hallowing One's Diminishments, by John Yungblut

Patients beyond Borders, by Josef Woodman

Rapt, by Winifred Gallagher

A Sea of Broken Hearts, by Dr. John James

Snake Oil Science, by R. Barker Bausell

Swimming in a Sea of Death, by David Rieff

To Love What Is, by Alix Kates Shulman

When Illness Goes Public, by Dr. Barron Lerner

When You're Falling, Dive, by Mark Matousek

We're going to put on your magic cream: Medical play

Cori Liptak on medical play [excerpted from this article about Cori Liptak’s work]:

Sometimes children aren't sedated for difficult procedures, and they need to sit still, and we help them to get through it. We can do work ahead of time to help them prepare so they understand what their job is throughout the course of the procedure. They might say, "Cori, I'm going to sit like a statue right now." Anytime you get to witness a child using something you taught and be successful as a result, that's rewarding.

For instance, when I use medical play with a child and see him stop giving the puppet lots of shots, and instead hear him say, "We're now going to put on your magic cream. It's numbing and you're not going to feel a thing. Don't be scared!" I’m watching him evolve in his ability to cope, and that transfers over into his real-life experience.

These behavioral interventions play a role in helping children master their situation medically.

Advice to parents: Role-playing a medical appointment with your child might make them less fearful.

Read about a very different kind of medical simulation.

Thanks to Cori Liptak, PhD, for the source article in the Fall/Winter 2008 issue of Paths of Progress, edited by Dawn Stapleton, and published by Dana-Farber Cancer Institute.

Their final act of service: Autopsies of fallen soldiers

Colonel Howard Harcke, a U.S. Army pathologist, noticed something peculiar in late 2005. The emergency treatment for a soldier's collapsed lung involves inserting a needle and tube into the chest cavity to relieve pressure and allow the lung to reinflate. But in one case, Colonel Harcke could see from a scan of an autopsied soldier that the tube had been too short to reach the chest cavity. Then he saw another case, and another, and half a dozen more. A collapsed lung can be life-threatening, so proper treatment is essential.

He pulled 100 CT scans of autopsied soldiers from the archives and calculated the average thickness of the chest wall in the American troops. He found that the standard tubing, five centimeters long, was too short for half the soldiers. If the tube were eight centimeters long, it would have been long enough for 99% of them.

The findings were presented to the Army Surgeon General, who ordered in August 2006 that the kits given to combat medics should be changed to include only the longer tubing. This allows for more effective emergency treatment of collapsed lungs.

Advice: Autopsies can teach doctors how to change medical practice to save people's lives. These fallen soldiers had a final act of service to others.

Read another story about the life-saving use of autopsies.

Thanks to Denise Grady for the source article in yesterday's New York Times.

Leave no veteran behind: Surviving veterans and their caregivers

On Memorial Day, we honor the soldiers who are continuing to grapple with their combat injuries, and we honor their family and professional caregivers and advocates. These are the men whose stories have appeared here in the last year:

Army Sgt. 1st Class Chris Blaxton survived the blast from an Improvised Explosive Device (IED) in Iraq. He has received help from the web site CaringBridge, his caregivers at Walter Reed Army Medical Center, and his niece, Anna Carncross.

Michael O'Neal, a veteran who served in Korea, has been cared for at the San Francisco Veterans Affairs Medical Center.

Army Staff Sergeant Brian Pearce survived in IED blast in Iraq. Dr. Kara Gagnon, director of low vision optometry at the West Haven, Connecticut veterans hospital, has been caring for him. The Blinded Veterans Association advocates on behalf of soldiers like Brian.

Sgt. Tony Wood, survivor of an explosion from an IED in Iraq, has been helped by the 10 in 10 Project, and the Warrior Transition Unit of Tripler Army Medical Center in Hawaii.

The Lion Still Roars: Teddy Kennedy & survival predictions

A year ago, Senator Teddy Kennedy's doctors told him he had 90 days to live. The senator pledged at the Democratic Convention in July that he would participate in Barack Obama's inauguration in January, and he did. We anticipate the arrival very soon of the Senate's universal health care bill, his long-time dream. "The lion still roars," as the Boston Herald's front-page headline of a story on Saturday by Hillary Chabot and Dave Wedge reports.

Doctors' predictions of how long a terminal patient has to live are often wrong. Indeed, these predictions only have "small associations" with survival times, according to a systematic review article that examined 24 studies. Dr. Antonio Vigano and his colleagues published their analysis of studies of terminal cancer patients in Palliative Medicine, a medical journal.

Advice to those hearing grim predictions of their survival time: Take it with a grain of salt, and savor Teddy Kennedy's example.

Read last year’s Teddy Kennedy story.

23 Employees: Farrah Fawcett and Patient Privacy, Part 2

California health regulators fined Kaiser Permanente's Bellflower hospital $250,000 Thursday for failing to keep 23 employees from snooping in the medical records of Nadya Suleman, the mother who set off a media frenzy after giving birth to octuplets in January.

The fine is the first monetary penalty imposed and largest allowed under a new state law enacted last year after widely publicized violations of privacy at UCLA Medical Center involving Farrah Fawcett, Britney Spears, California First Lady Maria Shriver and other celebrities.

The breaches involving Farrah's medical records -- first reported by The Los Angeles Times in April 2008 -- enraged California lawmakers and prompted the new law. In Farrah's case, a low-level UCLA employee accessed her records more often than her own doctors. The employee pleaded guilty last year to federal felony charges of selling the information to the National Enquirer.

Farrah said recently that she had suspected that hospital staff were leaking her records. To test that, she delayed telling her family about a specific recent diagnosis – until after it was leaked to the press – proof that an employee had been snooping.

Advice to people concerned about privacy: Ask your doctor to sign this form by the Patient Privacy Rights Foundation.

Read last year's story about Farrah.

Thanks to Charles Ornstein for the source story in the May 15 issue of the Los Angeles Times.

Your pet’s health is very important to us: Appointment reminder cards

Last month I received a cute postcard from our dog's veterinarian. It has a photo of a beagle puppy lying down, underneath a golden kitten, and they're looking at each other, nose to nose. Under the title, Keep your Companion Healthy, are four bullet points:

Bring them in for regular exams;
Keep their vaccinations current;
Ensure a proper diet and exercise;
Give them lots of love.

On the other side of the postcard is the vet's address and phone number, and a list of the five vaccinations that Jackson should get, with the date that each is due. The message at the bottom says: "Your pet's health is very important to us. Please call for an appointment."

Do you routinely get a friendly reminder like this from your doctor of the need to schedule an appointment? I don't. The vet's electronic medical record system must have generated the postcard, for there is no handwriting on it. The only manual step was to put the postage stamp on it.

To our friends who are doctors in medical practices: We can send a man to the moon, and we can replace hearts and lungs and livers. In addition to those heroic acts, as patients, we'd really appreciate getting a simple reminder card if we forget to schedule an appointment for our well-loved human pet.

Read another story of how our dog's electronic medical record is better than mine.

Our vet’s office: Highland Animal Hospital in Needham, Massachusetts.

Advice to those who are picking a doctor: Choose one who uses an electronic medical record system.

It's our heads under the knife: Comparative effectiveness research on treatment outcomes

I'm in training again toward an ambitious personal fitness goal, and it feels good. That's a real change from a few months back, when I had to stop jogging, biking and rowing because of a nasal condition. Here's the story:

Feeling congested all the time, I saw my primary care doctor. He referred me to an ear-nose-throat (ENT) surgeon for a consultation. The ENT surgeon examined me, and suggested – surprise! – surgery. (Indeed, Jack Fowler of the Foundation for Informed Medical Decision Making says surgeons recommend surgery in most of their consultations.)

I found and read a book on the treatment options for this condition, written by a surgeon who has widely performed this operation. To my surprise, I learned that he has started generally advising patients against this operation. I looked on the Internet to find the comments of patients who had had the surgery, and learned that many patients needed the operation again a few years later. Others reported that their recuperation had been particularly uncomfortable.

Luckily, I learned that an alternative to surgery was available: a steroidal inhaled spray, which has eliminated the congestion. It seems that I don't need surgery.

So now it's springtime, and I can train again, and breathe deep of the fresh air. And there's the fresh air of a new presidential administration. A thousand flowers, and a thousand legislative bills, are blooming.

One big bill would fund and publicize comparative effectiveness research on treatment options. Pres. Obama said that government should serve as an honest broker in helping people assess and evaluate treatment options. As he told interviewer David Leonhardt in Sunday's New York Times Magazine, "[it's] not an attempt to micromanage the doctor-patient relationship. It is an attempt to say to patients, we've looked at some objective studies, people who know about this stuff, concluding that the blue pill, which costs half as much as the red pill, is just as effective, and you might want to go ahead and get the blue one. And if a provider is pushing the red one on you, then you should at least ask some important questions….You have to have some independent group that can give you guidance."

Yes. For the septoplasty et al that I was considering, it would have been helpful to know what fraction of these surgical patients would recommend the surgery to a friend, how many needed the surgery repeated, how uncomfortable the recuperation was, how they rated the long-term improvement in how they felt, and how dangerous it was. The treatment decision is about the clinical quality as patients define it – not as it's usually defined by clinical outcomes researchers.

I hope that the $1.1 billion to be spent very soon on comparative effectiveness research will be spent on outcomes as patients define them. It's our heads that are under the knife…

In buying a car, I first look at Consumer Reports. This esteemed nonprofit routinely surveys car owners and portrays their findings on key dimensions of the cars' quality. We need something similar so that we can become smart buyers of our own healthcare.

Advice: Read widely about treatment options before you make a decision.

Read another story on a treatment decision.

A heaven of hell: The focused life

Winifred Gallagher's story:
Attention is selection: It's either this or it’s that.

During my cancer treatment several years ago, I managed to remain relatively cheerful by keeping in mind William James' comment, "My experience is what I agree to attend to." And this line from Milton: "The mind is its own place, and in itself can make a heaven of hell, a hell of heaven."

People don't understand that attention is a finite resource, like money. Do you want to invest your cognitive cash on endless Twittering or Net surfing or couch potatoing? You're constantly making choices, and your choices determine your experience, just as William James said.

You can lead a miserable life by obsessing on problems. You can drive yourself crazy trying to multitask and answer every email instantly.

When I woke up in the morning [several years ago], I'd ask myself, Do you want to lie here paying attention to the very good chance you'll die and leave your children motherless, or do you want to get up and wash your face and pay attention to your work and your family and your friends? Hell or heaven – it's your choice.


Winifred's book, Rapt, is a guide to the science of paying attention. This post was synthesized from excerpts of her book, as reported by John Tierney in today's New York Times.

Read another story about the surprising effects of removing distractions.

Thanks to Winifred Gallagher, and John Tierney for the source article.

Beginner's Luck & the Darlin' Spector of Universal Health Care: Obama's First Hundred Days

Today was Barack Obama's 100th day as president, giving us wags an irresistible chance to bloviate.

Are you healthier than you were on January 19? Probably not. Will you be healthier in the future, based on the last 100 days? Probably so, though not for the reasons you think.

Pres. Obama chose a guy from Scranton, Pennsylvania as his vice president. Joe Biden had been commuting home from Washington DC on the train, sharing seats with passengers he came to know well – like Sen. Arlen Spector of Pennsylvania. Biden influenced Spector's decision to change his party affiliation, giving the Democrats a nearly filibuster-proof majority in the US Senate. And it significantly strengthens the chance of passage of legislation favored by Pres. Obama like the coming universal health care bill.

Today the Senate voted by 53-43 to accept the president's budget, which includes funding for universal insurance. Sen. Spector, along with all the other Republicans, voted No. Presumably the newly Democratic Sen. Spector will vote Yes in the future, adding a critically important vote to the slim majority for the very controversial universal health insurance bill, forthcoming by October.

The conservative Democrats who voted against the budget because of what they saw as its excessive funding will likely insist on cost controls in the future universal health insurance bill, according to today's NY Times. Electronic medical records are being touted for this purpose for their role in limiting costs. For example, an EMR might reveal to a doctor that an expensive test like an X-ray or CT scan has already been performed, saving costs and time in the hospital. Or the legibility of the EMR's typed doctors' orders and progress notes might prevent costly errors. Or the automatic reminders generated by the EMR might lead to the earlier detection and cheaper treatment of cancer. Of course, in addition to these financial benefits of the EMR are their savings of lives and suffering: fewer days in the hospital, invasive tests that need not be performed, less chemotherapy, etc.

Obama was lucky to have Sen. Spector become a Democrat. Arguably, he created his own luck by choosing the guy from Scranton as a vice president. Either way, the result is a higher chance of passage of universal health insurance, and of substantial financial support for the widespread use of electronic medical records.

The result, ultimately, in your life: you're more likely to get an automatic reminder from your doctor about your next appointment. When you call your doctor's medical practice at night and get a covering doctor on call, that doctor is more likely to have electronic access to your medical record, and to give you better advice. When you're in the hospital, the computer will be more likely to intercept would-be overdoses and wrong drugs.

And, if you’re one of the 50 million Americans who don't have health insurance now, you'll be more likely to get coverage, and health care, based on Obama's decisions, and luck, during the last 100 days.

These likely future improvements of broader health insurance and broadened use of EMRs add to those in Obama's first month.

All in all, not a bad start in improving public health.

The very thought is dreadful: Hastening the Surgical Recovery Process

Kat Sanders' story:
The very thought of surgery is dreadful, and I don't think people in their right senses would volunteer to go under the surgeon's knife. I do know that there are hundreds of thousands of people who willingly undergo cosmetic surgery, but I really don't see the fun in this process. Of course, they reap the benefits of their patience, and well, persistence.

But it's a whole new ball game when you must be cut open in order to recover from an illness or if you've suffered an injury. Sometimes, you're not prepared and the surgery has to be done in an emergency. Whatever the reason you're on an operating table, your first thought is survival (even a minor surgery could go wrong if luck is not on your side), and once you pass that hurdle, you're going to be wondering how long it's going to take you to get back to normal. Those were the exact same thoughts going through my mind when I had to have a knee surgery to get my ACL (anterior cruciate ligament) reconstructed. I was anxious to know how soon I could go back to playing racquetball (which was how I sustained the injury in the first place).

If you want to get back to normal as soon as possible after a surgery, here's what you need to do:

· Don't hurry the process: This may seem contradictory to the subject of this post, but let me explain. My doctor was really good, not just in the operating room, but also in his bedside manner. He assured me that I would be back on court in three months. But it actually took me six to really get back to form. He was only trying to get me to be positive when he gave me the ballpark figure of three months. The truth is that I needed to give my body more time to adjust to my new ligament, and the longer I waited, the stronger I became. If you hurry the process, you're only risking injuring yourself again.

· Listen to your doctor: No matter what you think is best for you, it's better to listen to your doctor. If you're asked to follow a physiotherapy routine, do it. Don't overdo anything though, in an effort to get better sooner. Your body is not a machine that you can push beyond limits. You need to respect it and allow yourself enough time to rest and recuperate before it becomes as good as new.

· Stay positive: When I had my ACL reconstruction, one mistake I made was to browse the Internet and read about the surgery. I say mistake because I was mostly bombarded with negative news and reactions. But thanks to the support of my friends and family, I was able to stay positive, and now, eight months on, here I am, fit and back on the courts again. When you start thinking that you can do something, your mind conditions your body to believe that it is possible. And this is why a positive attitude works wonders when you’re recovering from a surgery.


Thanks to Kat Sanders for writing this post. Kat regularly blogs on the topic of online surgical tech school at her blog iScrub. She welcomes your comments and questions at her email address: katsanders25@gmail.com

Read a story about another athlete’s recovery from knee surgery.

Run the talk: The Boston Marathon

More than 26,000 runners ran the 113th Boston Marathon on Monday. Among them were numerous athletes who were raising money for cancer research, via Dana Farber Cancer Institute's Jimmy Fund, and many others wearing the yellow LiveStrong jerseys of Lance Armstrong's foundation. Some had hand-written on their shirts "for Mom," or other loved ones, presumably cancer victims.

The Jimmy Fund aimed at a fund-raising goal of $4.85 million through the runners' efforts. The runners benefit from the exercise, too, and all of us benefit from their inspiration, and their perspiration.

It was a stirring sight, as always, to see the runners of very different levels of ability.

Bravo! Encore!

Advice: You can walk the talk about fighting disease, and sometimes you get to run the talk.

Read a story about another athlete’s fund-raising to fight disease.

Making the programs especially desirable: Surgical errors in babies' treatment at a Boston teaching hospital

A Harvard teaching hospital in Boston just announced that it has suspended its program of heart surgery for children, just after making serious "technical errors" in surgery affecting two babies. One baby suffered neurological damage, and was transferred to Children's Hospital. The other is still at the same hospital, weeks after the March surgery, and is recovering. The physician hospital spokesman said that "patient privacy concerns" prevented him from describing the surgical errors in more detail.

State health officials recommend that hospitals perform at least about 25 adult heart operations a month, but they do not set a standard for pediatric heart surgery. The hospital where these errors occurred performed an average of only four or five of these operations a month. By contrast, surgical teams at Boston Children's Hospital perform about 90 of these operations each month.

Practice makes near-perfect for surgical teams, as it does for everyone else.

Dr. Peter Manning, director of cardiothoracic surgery at Cincinnati Children's Hospital Medical Center, said that cardiac surgery can be lucrative and prestigious for hospitals, making the programs especially desirable for hospitals.

Advice to parents considering surgery for their children: Get your child to a hospital with a surgeon and surgical team who perform that specific operation frequently.

Read a story about appropriately assertive parents’ preferences in a teaching hospital. Thanks to Liz Kowalczyk for the source story in the Boston Globe on April 17.

The bleeding was mysterious: Re-admission to the hospital

Here's the story of Jocelyn Angel Mommy of Melbourne, Florida, found on Nikki's Project Angel Mommy on MySpace:

I married a man who already had two children (then ages 11 and 9) from his first marriage. It was my only marriage and I had no children and I really wanted to have my own but I had to wait till he was ready which took more than 6 years. We did conceive quickly though and I found out I was pregnant on my 36th birthday in April 2004. My pregnancy was rough on me -- I was extremely nauseated and vomiting a lot for the first couple of months. But I was starting to feel better and get excited around halfway through and I allowed myself to believe I would really be bringing a baby home.

On Aug. 10, 2004, at 22 weeks, I started bleeding at home. I was admitted to Labor & Delivery and the bleeding was mysterious but they found my blood pressure to be extremely high. Although I was released the next day with meds (bleeding had stopped), the BP didn't come down so I was readmitted a few days later. I was in the hospital for another 10 days but nothing they did kept my BP down so I was transferred to a larger hospital in Orlando on Aug. 24th. There I got very sick very quickly and was diagnosed with severe pre-eclampsia and HELLP syndrome...my life was in immediate danger and my only chance was to deliver the baby immediately.

[HELLP syndrome, a variant of pre-eclampsia, stands for: Hemolytic anemia, Elevated Liver enzymes and Low Platelet count, according to Wikipedia.]


Jocelyn was one of the people whose "bounce-back" re-admission to the hospital can indicate that the quality of care during her first hospital admission had been sub-par. This is a disturbingly common occurrence. In a recent study in the New England Journal of Medicine of April 2, Dr. Stephen Jencks and his collaborators found that one-fifth (20%) of Medicare inpatients were re-admitted within a month of their discharge. The results: great suffering, like Jocelyn's, and great costs, many of them unnecessary.

Apparently, many of the re-admitted people in the study had not seen their primary care doctor between the two inpatient stays. Dr. Jencks found that half of the patients with medical (i.e., non-surgical) discharges had not had a doctor's office visit between the two hospitalizations.

Advice to people who are leaving the hospital: Make sure you see your primary care provider right away, and make sure he or she knows you've just left the hospital.

Thanks to Jocelyn and Nikki.

Leviticus and clinical guidelines

I just had another birthday, and, with my daughter's Bat Mitzvah coming up, my own Bar Mitzvah, 39 years ago, came to mind. (A Bar Mitzvah is a religious ceremony when a Jewish 13-year-old formally takes on the obligations of adulthood, in front of friends and family.)

My Torah (Old Testament) portion was in Chapter 13 of Leviticus, where God gives instructions to the priests – the closest thing then to doctors – on how to diagnose various skin conditions. Various types of skin blemishes and conditions are described and differentiated, to allow differential diagnoses, with different treatments prescribed for each.

In three key ways, this method is superior to that often used by today's doctors. First, the guidelines in Leviticus are clearly authoritative. The source has credibility among the priestly medical practitioners of that time and place, e.g., with reference to the proper sterilization of cloths. God clearly specified that under certain circumstances the double washing of certain cloths can make them clean enough for re-use (verse 58). Hospitals might find their policies on sterilization and the prevention of infections are somewhat less clear, and are less authoritative, than this, as the embarrassing news about the recent spate of hospital acquired infections makes clear.

Second, the guidelines in Leviticus were widely known. They had been published in numerous languages, and the Bible is the most widely owned book, so everyone could refer to them if needed. By contrast, often today's doctors aren’t aware of consensus guidelines, and don't heed them.

Third, the guidelines in Leviticus have been translated into a language that consumers can readily understand. Note that they originally appeared in a language – Aramaic - readable only by a few. This may be the biggest advantage that Leviticus holds over modern clinical guidelines, which are generally known only to doctors. Only now, with the Internet, is diagnostic information readily widely available to laymen.

The clinical guidelines in Leviticus are authoritative, widely known and available, and clearly understandable by laymen – excellent goals for more modern clinical guidelines in our more skeptical era.

Read a story about modern diagnosis in the Internet era.

Thousands of miles away, but right there: Pharmacy computer alerts

Something is better than nothing. On a recent trip my cold turned into an infection. The local walk-in clinic prescribed an antibiotic.

My drug insurance company – thousands of miles away, but right there on my pharmacist's computer – refused to pay for it because the prescribed antibiotic interacted with another drug I am taking.

Death, a stroke, or at minimum, a very bad headache would have ensued.

The pharmacist called the doctor, and something suitable was submitted. So there are some beginnings on shared electronic health data, and I am very glad.

-Hal Winsborough, Madison, Wisconsin

The pharmacy's computer alert, and the pharmacist's reaction, prevented injury to Hal. However, these computer systems are only as good as the human pharmacist who heeds, or ignores, the alert. Here's another story, about a pharmacy computer alert that a pharmacist chose to ignore and override.

Thanks to Hal Winsborough for his letter to the editor, published in the New York Times of April 11.

Take your stupid X-rays!: A patient's choice of treatment

Dr. George Reskakis' story:
It was the first time I had met Cynthia. She was dressed impeccably in a blue suit with an understated brooch on the collar – a woman who clearly took care of herself. So I was surprised when she complained of bad breath.

She just wanted a teeth cleaning. As part of the standard conversation with new patients, I explained the need for a proper evaluation, including X-rays.

She was unequivocal: "X-rays! No way!"

In 28 years in general practice, I have seen the full range of reactions to the dentist’s chair. Personal experience plays a part. So do the stories of friends and family, and "I'd rather have a root canal" jokes. The Internet can give people enough knowledge to be dangerous. A trip to the dentist gives people the motivation to be insistent, even demanding, regarding care that might not be appropriate.

If I do what they want I risk missing something or making poor treatment decisions. If I do what is right, I risk losing a patient who needs help.

I explained that for a dentist seeing a new patient, a thorough exam and a set of good X-rays are the foundation of good care, and that the current guidelines from the American Dental Association suggest that healthy adults without evidence of tooth decay or additional risk factors should have films taken every couple of years.

She had last had dental X-rays three years earlier. We talked for 15 minutes more about X-rays – the modern, digital system, the minimal amount of radiation she would receive, and its quick and painless nature.

I did not want to lose her as a patient, but I could not give in. I told her I couldn't ignore the possibility of underlying disease. I needed X-rays if I was going to treat her.

"Fine," she said finally. "Take your stupid X-rays."

It wasn't until after we completed her treatment (root canals, gum surgery, two posts and two crowns) that Cynthia confided the reason she had fought so hard against X-rays. Her mother had died from cancer that was caused by radiation treatment as a child.

We talked again about radiation, and the difference between diagnostic radiation doses and therapeutic radiation doses. In the early 1950s, I told her, the doses were hundreds of thousands of times what is used today; there was not enough evidence yet of radiation’s harmfulness.

Cynthia came around to the idea that X-rays are a safe and useful medical tool.

Advice to people thinking of having diagnostic tests: Find a doctor who will listen to your concerns and take the time to discuss them with you.

Read a story about a dentist's patient-mindedness.

Thanks to Dr. George Reskakis for his article in the NY Times of November 18, 2008.

Between sandwich bites: Testicular surgery against a father’s wishes

This is a father's complaint to the Nevada State Board of Medical Examiners:

To whom it may concern, from one who it has concerned greatly:

It is said that the greatest skill of a doctor is their bedside manners. I could agree with this in theory, the theory being predicated on the hope, my hope that the doctor is operating on all cylinders, is integrated, aligned, smart and most importantly honest. A doctor can have a wonderful personality and a wonderful bedside manner and yet, be completely deceptive, dishonest and completely unconcerned with our welfare when compared to standard practices and of course legal liability. It appears in our mostly litigious society doctors are scared of lawsuit and therefore will be most versed in how to avoid lawsuit secondary to their professional skill.

Such is the case with Dr. J.

I met her on what may have been considered a routine pre-surgical consult. The surgery we discussed was an exploratory surgery for my son's ascended right testicle. I asked lots of questions. In my world, this surgery was going to be a simple procedure because I felt a lump on my son's upper right pubic bone, which gave me assurance that his testicle was there and merely required some medical assistance to return it to where it belonged in his scrotum.

It seemed it would be a simple procedure on the doctor’s part as well because she was far more concerned with eating her lunch in either a recently vacated office or an office she has recently moved into. I followed her into this room to continue my line of questioning. I asked her about her rather flippant line where she said his testicle would be removed if it was less than the size of her pinky fingernail, while ceremoniously indicating such with her extended digits.

I asked her- "What if it is exactly the size of your fingernail?"

"I would still remove it," she replied between bites of her sandwich.

"Really? I don't like that idea. If it is the size of your fingernail, then I expect it stays in. In fact, I'd prefer if his testicle is not the size to move, then it is left alone," I said firmly. She nodded in agreement with her mouth full.

Little did I know at this point I should have pursued a more explicit confirmation of my request, as in I should have gotten this confirmation in detailed affirmation, notarized and with a medical examiner witness.

Because as it turned out later, the doctor removed my son's right ascended testicle without actually measuring it at all. To further add insult to injury to my son and to my duty to protect as Father, she claimed that it was a pre-cancerous situation and that the testicle would be tested for cancer cells. This of course was just a ruse and was never carried out. Of course a young struggling testicle will show no signs of cancer. The main problem I learned from my multiple attempts to find a pediatric urological expert witness is that Doctor J. toed the line of medical malpractice liability. If anything atrophic (by her view) is left in the body, then that is a more litigious situation then actually following the patient's parent's request. In fact, the doctor now sanctimoniously hides behind even more medical legalese by claiming that she did what was "clearly in the best interest of the patient."

How does she know what is in the best interest of the patient?

Oh, because she refers to "a multitude of medical research findings" which only gives her a bigger trench to sit with her other than conscious behavior.

I clearly told her what is in the best interest of my son and she affirmed my request. If she was somehow medically bound to complete my son's procedure with a forced removal of his testicle, then she should have told me clearly at our meeting. Because if she told me at our pre-surgical operation meeting that she is required by medical directives to avoid any future lawsuit and to remove my son's testicle I clearly would have opted out of such a railroaded situation and continued my exploration of alternative therapy.

This is the crux of my crucifixion. And this is also where I hope and pray the doctor is nailed for negligence.

There are errors of omission and then there are errors of commission.

And then there are errors of both. Errors of commission are answering a question incorrectly, which she did. Failing to answer a question or to answer a question in full is an error of omission. She did both while gleefully eating her packed lunch. Such contempt.

I choose at this time to abbreviate my letter and my complaint. I'm sure there are things I could have done differently and things I could have said differently, yet clearly someone in the room of pre-surgical consultation was licensed as the professional, yet clearly my curious questioning was indignantly refused. If I asked nothing, I could accept my results. If I refused nothing, I could accept my results. If I clearly asked and directed the doctor and she told me clearly what she was legally required to do, then I would have accepted an entirely different outcome.

The doctor should listen closer to patients, especially parents.

So in fact, bedside manners are very important. Maybe all of this would have been very different had the doctor demonstrated polite, concerned, engaged listening. And I know it would have been a significantly better outcome if the doctor revealed direct honesty of what is medically required in her surgical procedure. She even could have done this between sandwich bites, or preferably after lunch.

Advice to parents: Specify your preferences for your child’s surgery in writing beforehand and have the surgeon sign it.

Read another story about the lack of informed consent for testicular cancer.

Thanks to Bryan Brey for sharing his story.

A Sea of Broken Hearts: Fatal errors in a young athlete’s medical treatment

Dr. John James tells the heart-breaking story of his son's medical treatment:

I lost my 19-year old son several years ago in Texas due to multiple medical errors. He had collapsed while running, self-recovered, but was taken by ambulance to a hospital in his college town. There cardiologists evaluated him for 5 days and could not find any cause of his collapse. They delegated his followup to a physician in training in family medicine, she gave him a clean bill of health, and two weeks later he collapsed and died while running.

There were several catastrophic medical errors. First his cardiologists failed to apply a national, widely published guideline for potassium replacement in a person with cardiac arrhythmias, they failed to make an obvious diagnosis of acquired long QT syndrome, and they failed to warn him properly that running would be hazardous to his life. They wrote in the medical record that they warned him against running just after they gave him a second dose of Versed, a drug widely used as a sedative and known to cause amnesia. His discharge summary gave the only written instruction: do not drive for 24 hours.

I have written a book called "A Sea of Broken Hearts" that chronicles my son's botched care, the cardiologists' clumsy tampering with evidence in the medical record, and why we need a national patient bill of rights.

Dr. James' Advice: What should I have done differently? First, I had an intuition that his college-town hospital and especially the cardiologist assigned to his case were in over their head. I sensed this when his cardiologist was not interested in me getting my son's previous electrocardiogram that the Air Force had done a few months before. I should have followed my intuition.

I was not aware of how easily one can be manipulated by fear. In my son's case we were told the woeful story of Pete Maravich who collapsed and died suddenly. At the time, we did not know what informed consent really ought to be, and so we were frightened into allowing invasive testing. In my book I give good (but not absolutely conclusive) evidence that the invasive testing set my son up for death. This was combined with Alex's untreated, severe potassium depletion.

 I should never have been so trusting. I should have asked to see the details of the results of every test that was done. This way I might have found out that the hospital had screwed up his cardiac MRI. I should also have demanded to see his medical records at least twice a day. I really did not know much cardiology at the time, but I might have seen the major change in his electrocardiogram that showed that three risk factors for sudden death had disappeared...temporarily. There is no evidence in the record that his cardiologists ever looked at this second electrocardiogram.

As Julia Hallisey DDS wrote in her book "The Empowered Patient": never trust your heart to a single cardiologist; get a second opinion. I would add: make certain it is an independent second opinion rendered without knowledge of the first opinion.

Read about the organization Dr. James has launched, Patient Safety America.

Thanks to Dr. James, a patient safety hero, for forming a nonprofit organization to help others, and writing his son's painful story.

Tired but wryly triumphant: Culturally competent care for a Somali patient

On an afternoon in late September, Dr. Douglas Pryce and Dr. Osman Harare, the interpreter and patient advocate, emerged from an examining room looking tired but wryly triumphant. They had just finished negotiating, politely but persistently, with a patient who – just as politely but persistently – had refused to allow any blood tests because it was the holy month of Ramadan and he feared that having blood drawn might be a sin.

Finally, they telephoned an imam, who declared that there was no sin. The blood was drawn.

Dr. Pryce says that one of the great joys of working in a hospital like Hennepin County Medical Center in Minneapolis is finding ways to bridge such cultural divides – and knowing that his patients are better off because of it.

Advice to people of another culture: Find a medical provider and interpreter who respect your cultural beliefs and medical preferences.

Read another story about culturally competent care.

Thanks to Denise Grady for the source article in the New York Times of March 29.

An April Fool's Daydream: The physical exam

A few days ago I got a warm, funny postcard from my doctor, reminding me of my upcoming appointment, asking me to email him my medication list, and inviting me to email him with any questions I'd like to discuss. In the card, he congratulates me on the progress I've made on my fitness plan, which he has monitored by email since my last physical exam. (He'd asked whether I preferred a letter, postcard, or email for the reminder, and since I'm not concerned about confidentiality, I preferred the postcard.)

A day or so before the visit, I email him my medication list, which my pharmacy had emailed me.

When I arrive, as I've been told, I first fill out a form asking what I'd like to talk about during the visit. The assistant hands me some patient education materials about the condition I've mentioned, and I read it during the short wait to see my doctor.

In the exam room, the nurse takes my weight, blood pressure, and pulse, and shows me on a graph how they compare with my past readings.

The doctor runs through my written questions. He refers to the problem list in my electronic medical record, and the note that the ENT specialist had emailed into it, which recommended surgery for a benign nasal polyp. My primary care doctor discusses the trade-offs of different options, and supports my decision not to have surgery for now. He advises me on how to use an inhaler that can shrink the polyp, forestalling or delaying the need for surgery. He realizes from the pharmacy's medication list and refill history that I've been using the inhaler every other day instead of daily, and we discuss that. By the end of the visit, we have discussed my fitness plan and my risk factors. At the end of the visit, he hands me some printed information about my condition and his suggestions, and the recommended date for the next appointment.

Advice: Dream big dreams, and work hard to make them come true.

Read another physical exam story.

To be their own voice: Early detection of breast cancer

Rep. Debbie Wasserman Schultz held a press conference yesterday in a small dining room at the U.S. Capitol building in Washington, DC to announce legislation for a national campaign to educate young women and their doctors on the need to start early on breast cancer detection. Her bill, the EARLY Act ("Education and Awareness Requires Learning Young"), would provide $9 million annually. She says it "would encourage young women to be their own voice – to speak up for themselves and know when they need to go to their doctor. The EARLY Act will teach both young women and medical professionals alike about risk factors, warning signs of breast cancer and predictive tools such as genetic testing that can help women make informed decisions about their health."

The glamorous 42-year-old congresswoman had discovered a breast lump through self-examination in December 2007. Since then, she has undergone seven major surgeries. She learned that her Ashkenazi Jewish ancestry places her at greater risk for the cancer to spread, so she chose to have a double mastectomy, and the removal of her ovaries.

She had kept the illness private during her re-election campaign, not wanting the illness to "define" her.

After her press conference, she had another important message to convey: "I'm healthy, and I'm through it."

She had to make some very tough choices. Maybe her most heroic choice was to go public and to sponsor legislation to protect other young women. That's why she's a patient advocate hero.

Advice: Like her, help others who face the difficult healthcare choices that you've had to confront.

Read another story of a vigorous and imaginative breast cancer survivor. Thanks to Richard Leiby for the source story in today's Washington Post.

Most of them love it: A surgeon's use of humor

Here's Nurse G.P.'s letter to a nursing advice columnist:
"Dr. Sam," a good-natured general surgeon in our same-day surgery clinic, enjoys chatting with patients before procedures. To put them at ease, he regales them with humorous stories, and most of them love it. Last week, Dr. Sam told several of his favorite stories to a patient who was clearly anxious. After he left, she confided to me that she was still dreading surgery. "I had some questions that I never got to ask because he was too busy being a comedian," she said.

Advice to patients about to undergo surgery: Bring a written list of your questions to hand to the doctor or nurse, in case it's hard to get a word in edgewise.

Read a story about physicians' attempts to build rapport with patients.

Thanks to Susan Salladay, the nursing advice columnist, for the source article in the July 2008 issue of Nursing2008.

While she lay in bed: Insurance denials for pre-existing conditions

"My mother died very suddenly and very young," her adult son told AARP Bulletin last fall.

Ann Dunham died in 1995 at age 52 after working as a consultant for the U.S. Agency for International Development, the Ford Foundation and Women's World Banking. She taught her son an important lesson about access to health care. "She'd go from contract to contract and would be able to buy health insurance [only] when she got a new contract," her son said. "When she got sick, she had just signed up for a new job, a new contract, and she had a lot of arguments of whether this was a pre-existing condition of which she had no knowledge whatsoever….As someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make sure those companies stop discriminating against those who are sick and who need care the most."

This is more than wishful thinking on the son's part, as he is now president of the United States – Barack Obama. As he said frequently during the presidential campaign, "These are not abstractions for me."

Advice: Fight for health insurance for all.

Read a story about a pre-existing condition.

Thanks to Jim Toedtman for the source article in the March issue of the AARP Bulletin.

40th Birthday in the Kingdom: A fatal misdiagnosis by an EMT

Gina's story [the names are changed]:
My older sister was 39, almost 40, and lived in Beaufort, South Carolina, on St. Helena's Island. My kids called her Aunt Mell. One day, we had to call for emergency help for her. The firemen came first, then two EMTs (emergency medical technicians).

The emergency medical technicians (EMTs) tried to help her up, but couldn't. At that time, at 5:34 am, her pulse was 126, which was regular; she just needed oxygen. They decided not to treat her until she got up herself. One guy thought she was faking it. With a lack of oxygen, you act a little funny…But they said, If you don't get up, I'm going to call the policeman! They wouldn't let me intervene.

So they didn't treat her for some time – for 18 minutes. I was praying for everything to be all right. I was in shock. She was my big sister, and she depended on me to come through for her. That morning, when she really needed me, I felt so helpless. I tried to help her by letting them help her.

He had his boots on her arm to help her stay down, or whatever.

She went into cardiac arrest. The one EMT guy just flipped out, called her by name, and then he knew she was gone. The EMT guy tried to work on her. "We have no time to waste," he said. They tried to revive her for 15-20 minutes, but I knew she was gone already. So instead of having her 40th birthday party with us, she had it in the Kingdom [of God].

I wanted an autopsy. The nurse said, "We have to do an autopsy; who do you want to take the body? I have to talk to a family member." But they acted like there was a mix-up, like one of my other siblings had told them something different. They went ahead and had a funeral service director pick her up, so there was no autopsy.

But their mistake was in the record anyway, so we were able to find out the truth. Most people thought she had died from an asthma attack, but I saw, and I knew better. I never thought I'd witness a medical team that didn't give help. It was such a nightmare – I thought I was dreaming.

I went through all of this in a deposition with a lawyer. The EMT guy was really mean; he had anger management issues. My attorney picked up on that, and said, He's a very angry man! But nothing happened to that man.

My mom was devastated by this. She spoke at the deposition, and poured her heart out. That brought her peace. She knew the truth, but was in too much pain to talk about it. The stress from all that shortened her life.

I haven't told anyone about this for ten years, until now.

Gina's Advice: If the EMTs don't seem to be helping your family member in an emergency, call 911 again, or call the police. Act right away!

Read another story of a 911 call gone awry.

Thanks to Gina for telling her story over the phone. A fuller account can be found in the October 2004 issue of the Journal of Emergency Medical Services, in Volume 29.

Motivated to advocate for quality improvement: “Quality Care Saves Lives” Event at the Massachusetts State House

This is a transcript of my introduction this morning’s event at the Massachusetts State House:

My name is Ken Farbstein and I serve as President of the Consumer Health Quality Council.

The Consumer Health Quality Council consists of a diverse group of people who have suffered, or whose family members have suffered, health care errors. So we are strongly motivated to advocate for quality improvement and patient safety. The group has been active since 2006.

Today four Council members will be sharing their stories: John McCormick from Pembroke, Jen Tosca from Kingston, Robena Reid from Acton, and Lucilia Prates, our founder and former president, from Arlington. Their video stories serve as powerful examples of those who are taking an active role in improving health care quality in Massachusetts. I would also like to acknowledge all of the Consumer Council members who are here today. Please stand up. Thank you.

The Council Members have been working with students at Boston University School for Public Health to make these video stories. We want to thank Dan Dao, Daniel Lau, Elizabeth Romero, and Nandini Ravishankar for their work.

If you are interested in learning more about the Council, please feel free to pick up information at the table or speak with me or any other member of the Consumer Council or Kuong Ly of Health Care For All.

You will hear some individual stories today, just a few of the many – too many -- stories across Massachusetts that make clear why we need to improve health care quality.

The short videos appear here.


John McCormick's Advice: You can insist on having a more senior doctor see the patient if you are unsatisfied with the resident's care.

See another video from Health Care for All.

He'd sailed through heart surgery: Failure to rescue

Six-year-old Christian Padilla of Fort Wayne, Indiana had sailed through a successful heart surgery to correct a birth defect in 2005, only to die days later from the preventable complications that characterize a failure to rescue case.

"The nurse didn't recognize his symptoms as something of concern," said the boy's father, Jim Padilla, 38, an assistant professor at a local university. "She described him in her medical notes as 'acting fidgety.'"

In reality, Christian was unconscious and suffering seizures as a result of the brain swelling that killed him, said his father, who received a $1.25 million combined settlement from the Indiana Patient's Compensation Fund and the hospital, according to the Indiana Department of Insurance.

It's not clear whether a drug reaction or another problem caused the swelling, said Padilla, who was at his son's side, frantic, throughout the ordeal.

"We got to the point where I had asked multiple times: 'Should he be sleeping so long?'" he said. "Over and over, I was told this was normal.'"

Such a failure to make a diagnosis in time, or to provide treatment in time, is called "failure to rescue."

The nurse's failure to notice Christian's subtle but increasing symptoms of distress is a key element of this measure of how well hospitals respond to unexpected complications — or don't, said Dr. Samantha Collier, chief medical officer for HealthGrades. "As an example, somebody comes in for an elective surgery like a knee replacement and turns up with vague symptoms, like shortness of breath, and the next thing you know, somebody dies," explained Dr. Collier. "It's obvious that if you go in for a knee surgery, you shouldn't die."

The term "failure to rescue" refers to cases where caregivers fail to notice or respond when a patient is dying of preventable complications in a hospital. Between 2004 and 2006, failure to rescue claimed more than 188,000 lives, amounting to about 128 deaths for every 1,000 patients at risk of complications, according to a report from HealthGrades, a health care ratings organization. That's more than any other measure found in the 2008 report, and indeed in five consecutive annual reports by Health Grade.

Advice to family members of a hospitalized relative: Insist that a Rapid Response Team help your relative if you see them declining rapidly in the hospital.

Thanks to JoNel Aleccia for the source story in MSNBC, and thanks to Helen Haskell.

$9.8 Billion of its own cash: High price of drugs

The big news today is of Merck’s acquisition/merger with Schering Plough, for $41 billion. Natasha Singer writes in today's New York Times that "Merck will use $9.8 billion of its own cash for the purchase." Hmmm, who did all that money come from?

Linda R. has a hunch, and a personal interest. Her letter, written a few days before the Merck/Schering story:

The drug companies use the high cost of current drugs to research new drugs that aren't even necessary. It's all a big money-making scheme. It's, "Let's see if we can come up with a drug for hangnails", and then "here's how we'll market it." Then they push the idea down consumers' throats with TV and magazine ads and push them on the doctors with salesman and samples. It all fuels big drug company profits. And when Congress or anyone asks, "Why are these drugs so expensive?" The drug companies say, "It's the cost of research!" Research for what? For another sleeping pill? For another drug for toenail fungus or mood swings. How many pills do we need out there for common maladies? It's all a scam!

This is what I'd like to see done. I'd like to see a watchdog committee go in and see just how much it costs to make a variety of 2nd-tier and 3rd-tier drugs. See how much the actual cost of the drug itself is. And when we have a National Health Plan in place, the government will only pay the actual cost of the pill. Let philanthropists fund research for important, groundbreaking discoveries and cures! Let the drug companies get out there with their hat in their hand, like every one else instead of taking it out of lower income pockets.

And then there are the patent laws. Why are drug companies allowed to have 5 and 10 year patents on new drugs? Back in 2001 when I was uninsured, I had to pay the $100 for a month's supply of a drug that an insured person only had to pay $20 or less for. It was part of what bankrupted me. And now there are other ways to get prescriptions at insurance coverage cost, but are people being actively informed? About stores like Costco that have a special program for uninsured people so they can buy their prescriptions for the same price as insured people? From experience I can tell you the answer is "No." It's only becoming known by word-of-mouth. I wonder why...

This article says it all much better than I can ---- "The Truth About the Drug Companies." This article tells it all.

I understand that the government doesn't want to oversee big business to the point of screwing up the capitalist system. However, government officials need to remember what the word "government" means: "Government is the body within any organization that has the authority to make and the power to enforce laws, regulations, or rules." The U.S. government needs to step up to the plate and start making new laws and enforcing new laws that will protect the American people from greedy and disreputable capitalism that directly affects Americans' quality of life.

My apologies, but this is what gets me on my soapbox! Thanks for helping. Go get 'em! One step at a time! One law at a time!

Advice: Help to pass one law at a time.

Read a story about high drug costs.

With significant potential financial gain: Unnecessary cardiac surgery

Father John Corapi went to Dr. M. for a diagnosis, and the doctor recommended surgery. Father Corapi then got second, third, fourth and fifth opinions, all of which disagreed with Dr. M.'s diagnosis and recommendation for cardiac surgery. He was so struck by these additional opinions that he went to the FBI.

The FBI performed a three-month investigation, interviewing medical staff at the local medical center in California, other patients of Dr. M., some of his colleagues, Dr. Gerald Rogan, and outside cardiologists as far away as the Cleveland Clinic. The FBI produced a 67-page affidavit that led to a search warrant authorizing an FBI raid on Dr. M.'s office. The affidavit contained a description of Dr. M.'s interaction with patients: the doctor bullied patients, and scared them. He would consistently tell patients, many of whom had ambiguous symptoms and no history of coronary disease, that he needed to perform an angiogram to determine whether the patient required invasive treatment. (An angiogram is a diagnostic test that takes X-ray pictures of the heart arteries, highlighted by an injected dye, via a soft catheter tube that the surgeon threads into the heart from an incision in the patient's groin. )

If the angiogram failed to document treatable disease, or as was frequently the case with Dr. M., was unreadable, he would perform an intravascular ultrasound, which at the time was new, and unfamiliar to many cardiologists. By improperly setting the gain on the ultrasound too high, Dr. M. guaranteed the appearance but not the reality of significant arterial blockages. Dr. M. would then lean over the supine patient and tell him in dire tones that without immediate bypass surgery, he would die. In such a stressful situation, few patients were sufficiently confident, rational, or sophisticated to ask for a second opinion. For the few who did, Dr. M. typically referred the patient to another doctor in his practice, who would confirm the diagnosis, relying on Dr. M.'s recommendation, and perform the surgery.

The California Medical Board sought a restraining order against the two doctors, finding that:

"Both have fraudulently misrepresented the findings of tests to induce and/or scare patients into having unnecessary surgeries or interventions. At best, this can be viewed as incompetent and/or grossly negligent as well as dishonest and corrupt. [They] misled, lied to or attempted to frighten patients into consenting to invasive coronary surgical procedures, at significant risk to the patient and with significant potential financial gain."

Advice: Work to reform the payment system that rewards unscrupulous doctors for unnecessary and dangerous surgery.

Read another story about unnecessary bypass surgery.

Thanks to Drs. Gerald Rogan, Frank Sebat and Ian Grady for the source, Disaster Analysis Redding Medical Center Congressional Report, June 1, 2008, and to Helen Haskell.

An incentive to do the wrong thing: A Phenergan injection lawsuit

Diana Levine is a guitarist, age 63, living in Vermont. She went to a clinic, complaining of pain from migraine headaches. A doctor there chose to inject her with Phenergan, an anti-nausea drug made by Wyeth Pharmaceuticals. Though the drug label permitted the drug's intravenous injection, it stated that "extreme care" was needed to avoid hitting an artery, because "likely" complications included "gangrene requiring amputation."

Unfortunately Diana immediately developed gangrene, and the musician's right forearm had to be amputated. She sued Wyeth, and won. The U.S. Supreme Court upheld the decision in a ruling today, by a vote of 6 to 3.

Diana’s case is especially significant because the Supreme Court's ruling enhances the rights of injured patients to hold drug makers responsible.

This case also implicates our payment system. Doctors are paid well for administering injections, and are not paid for prescribing oral drugs, for example, that usually offer available alternatives. The reimbursement system provided an incentive to do the wrong thing, and Diana is suffering for it.

Advice: Consider a lawsuit if a medication error causes you significant injury.

Read a story about a migraine sufferer.

Thanks to Jess Bravin; and Joan Biskupic and Julie Appleby for the source articles in today's Wall St. Journal and USA Today, respectively.

Her law came too late for her: Insured medical leaves of absence

Michelle Morse was a full-time student at Plymouth State University in New Hampshire. Michelle was found to have colon cancer in 203, and her doctor recommended she take a leave of absence for chemotherapy.

But if she took a leave, she would lose her insurance. She stayed in school while undergoing her treatments, and at the same time campaigned for a law to let students stay on their parents' health insurance while on medical leave from college. Congress passed the law last year, but it came too late for her: she died in 2005.

Would it have made a difference if Michelle had been able to take a leave and focus on treatment? "We'll never know," said her mother, AnneMarie Morse.

"It was horrible," AnneMarie said of her dealings with the insurance companies. When one executive told her indignantly that the company had already paid out a lot of money for Michelle, she responded, "I would give my life for you not to have to pay one cent for my daughter."

Michelle is a hero for using her anger at the insurance system to advocate a law that now protects people in her situation.

Advice: Get busy as a citizen, like Michelle, to push the reform of our screwy healthcare insurance system.

Read a story showing the need for reform of our payment system.

Thanks to Nicholas Kristof for the source article in the March 1 issue of the NY Times.

Ten years ago, she had one year to live: Mistrust of doctors’ opinions

Dr. Abigail Zuger's story:
A patient and I have been conducting an increasingly existential dialogue on these subjects for years now – not easy to sustain in 15-minute segments, even less as we both realize we are getting exactly nowhere.

She has untreated HIV infection with an immune system now so dysfunctional that it is quite extraordinary for her to be still in the pink of health.

Which she is, no doubt about it. She feels fine. At some point in the past a health care professional hazarded that she had a year to live, and after 10 years she lost all faith in expert predictions.

From my own long experience with patients just like her, I know the very unpleasant future that surely awaits her. She has no interest in letting my memories drag her across the river. She only knows she feels fine. Furthermore, she has tried all the drugs that will change her risk, and every one of them makes her feel sick.

We have tossed this all around many times, and each time she enumerates the same paradox: I, with my gloomy warnings and my new ideas for medication, am trying to make her sick. She is determined to stay healthy.

Healthy to infect others, I point out. Healthy to leave her son an orphan. Healthy until she gets sicker than anyone needs to be.

Healthy in the here and now, she insists. Healthy not to throw up every morning, healthy enough to go to work, pay the bills and buy the kid a set of drums. Healthy to feel like herself.

Clearly, there is health, and there is health, and sometimes the twain just will not meet. Meanwhile, every time I look at her lab reports I feel a little sick.

When epidemic infection came to town in the old days, it was usually clear who was sick and who was well. Yet in the midst of New York's typhoid outbreaks of the early 20th century, one of the healthy was Mary Mallon, "Typhoid Mary," the cook who carried the germ, infected dozens of others, yet never got sick.

Health is as hard to define as love or happiness, and even harder to trap and keep.

Advice to victims of medical errors: Remember that even after you've had a doctor make a mistake, doctors are still right much more often than they're wrong.

Thanks to Dr. Abigail Zuger for the source article in the Sept. 30 issue of the New York Times.