They stopped me from saving her life: Patient partnership and E.R. treatment

Lee's story:
I live here in Arlington, Massachusetts. For several years I was dating a woman named Elizabeth. She was a Type 1 diabetic from when she was 12 years old. She hadn't taken good care with her insulin when she was young because she was angry and felt adults didn't understand her. Her mom was divorced several times during her childhood, and that added to what she rebelled against by eating sugar when she shouldn't. She also feared gaining weight if she took as much insulin as she should. Most type 1 diabetics became diabetics as children, and have inner psychological battles. There's a very private inner painful world – they could die if they don't do what they're supposed to do. Some kids rebel….

When I met her, Elizabeth's condition had advanced to the point where both of her kidneys had failed, and she had received a transplanted kidney from her mother. She had had five eye operations, and was legally blind in one eye. She had neuropathy [a nerve problem] in her feet and hands, and couldn't balance well. She was an adorable, absolutely lovely and loving person, the most amazing person I ever met.

Due to side-effects of the immunosuppressive drugs she was on to prevent rejection of her transplanted kidney, her vascular condition had degenerated to that of a typical 95-year old woman (though she was only 43). At the time of her kidney transplant, the immunosuppressive drugs used caused calcium to leach out of bones and deposit in the walls of her arteries, so she had atherosclerosis, and plaque deposits in her arteries.

During 2008 she had four minor strokes, and recovered completely from each. She also developed arterial spasm events in her brain which could give stroke-like symptoms. She'd have to go the E.R. when a brain artery spasm happened, and the spasm could be immediately relieved with Compazine.

On New Year's Eve Day last year, she called me at 6 am in the middle of one of these brain arterial spasms; I rushed to her house and drove her to the E.R.

She had been through the same situation in that E.R. four or five times before, so it was all in her records what needed to be done, including a letter with specific directions from her stroke specialist; all they had to do was give her a short I.V. [intravenous, i.e., into the vein] of Compazine. But the E.R. doctor decided to review her whole case first. So she continued retching, and her retching caused a cerebral hemorrhage. Because of the cerebral hemorrhage she was taken off Plavix in the ICU [intensive care unit]. Before she completed her recovery from the hemorrhage in the ICU, she had a severe stroke – because she'd been taken off the Plavix - and she died.

During the whole time in the E.R., I was telling the nurse, "You need to give her the Compazine! Here's a letter about that from the stroke [physician] specialist!" I asked the nurse, "Can't you just give the IV?" She said, Not without a doctor's order. The letter from the stroke specialist wasn't good enough.

So she didn't get the Compazine in time. That review by the E.R. doctor effectively killed her – because of the time he spent on it.

I knew more about her condition, much more, than the E.R. doctor because I'd read hundreds of pages of information about it. The nurse asked him to come into the room and talk to me, but he did not come in until after her hemorrhage, and by then it was too late.. Doctors assume that someone who's not an M.D. is an idiot; it's not the case. Sometimes we are better educated about a condition than the doctor.

With the computer system at that hospital, there's no way for a standing order to be placed in the system to dictate what to do during an E.R. visit with a particular problem. So someone with a recurring condition (as most stroke patients have), cannot take advantage of their stroke specialist's prior knowledge of what has to be done.

I've called every major vendor of healthcare software in the U.S. No system has a feature allowing it to hold a standing order for the E.R. If such a feature existed, Elizabeth would be alive.

Back up four months: When we learned first about the brain arterial spasm problem that Elizabeth had, and how critically she'd need Compazine, I asked if I could have a vial of Compazine and a syringe to use in an emergency. Their answer: the standard dose is by I.V. and not syringe injection. Our policy is that we don't allow people to have Compazine at home. I had specifically tried to be responsible in a way to save her life, and they stopped me, like they did later in the E.R. too.

I'd tried to save her another way, too. When we were in the car on the way to the E.R., I called ahead, and asked them to please get the Compazine ready. They answered, "No, you’re not an ambulance."

I don't want to pursue a legal case unless that is necessary to change their system. Not every doctor will be good; the guy that was on duty in the E.R. was horrible. I want a capability so a person can prevent damage from the stupidity of an inadequate doctor by acting ahead of time.

This business of preventing people who are highly responsible for their health from helping themselves and the ones they love is insane!

The hospital wouldn't let us have a Compazine for an emergency they knew would predictably occur. What do you mean, she can't have a syringe?! She gave herself insulin about four times a day!

I could be trained. I'm a very competent person. I taught at MIT and I designed medical equipment for years at Hewlett Packard. If I'd known a spasm could kill her, I'd have done whatever it took to have that Compazine at home. If I had to, I would have stolen the stuff.

Lee's Advice: If you or someone you love has a recurring condition that needs to be treated at the E.R., write a letter to the hospital urging them to put in place a standing order at the E.R. for how to treat your condition. Urge them also to put in place a policy of preparing for your arrival based on a phone call from you. If there is a treatment you should be trained to give at home, push to be trained to administer that treatment.

Please feel free to send a copy of this along with your request, and please let the writer of this blog know what response you get.


Thanks to Lee Weinstein for sharing Elizabeth's story.

Read about a near-miss in matching a patient’s home medications with hospital medications [“medication reconciliation”].

Run, do not walk: A dentist's errors

Patti's story:
In 2002 I was referred to a dentist by my family physician. The dentist insisted he perform a full mouth oral reconstruction and he was the "best" for the job. My dentist told me a panoramic X-ray would be taken before recon but later I found he had no such machine. He also told me I would be given antibiotics...knowing I had a heart condition.

Immediately all my veneers broke at one a month as my dentist tried to patch them with a yellowed crackled substance. Later my front teeth had to be filed down and capped. I also learned other patients of this dentist had veneer failures.

In 2004 my recon was still not complete. My dentist ignored facial pain, numbness, swelling, infection and inability to chew solid food. His response was, "shut up, you're losing weight." My dentist also told me to "shut up" or, I'll take back your reconstruction...you don't deserve my reconstruction. I didn't know what that meant.

After my veneers failed a newly crowned molar broke due to improper load force. My dentist angrily slathered a rough substance over my molar with visible debris still under the slathered crown.

Later four unsuccessful root canals were performed, all necrotic, all with no antibiotics. My dentist stated I could become immune to a plaque if given antibiotics. I lost my crown and learned of crown replacement guarantees.

After one of my past root canals I confronted my dentist about sedating me without my knowledge or consent. He was leaving me to drive home alone under the "influence." His response to my sleeping was, "You were wasting costly chair time." I told him to never do that again.

During an appointment for final impressions for that "free" replacement crown my dentist sedated me again without my permission. He was verbally and physically abusive. He drilled for two hours through the "sole" of my molar. He stated in my file I would lose that molar.

I sought the best of dentists including periodontists and prosthodontists for sectioning. But my dentist destroyed everything above the gum including his own crown lengthening and gum surgery which he told me would be done by a periodontist. Another one of my dentist's lies.

I also found out from those dental specialists I had TMD from an improperly positioned reconstruction.

Weeks later with no antibiotics and what was left of a severed necrotic molar sealed in silver amalgam I was admitted to a hospital with septic shock, hemorrhaging internally. I was put on life support with renal and respiratory failure. My insides were repaired as best they could. My family was told I would die. At 5' 7" I was left weighing 83 pounds.

Due to malnutrition I lost my hair and fingernails. My surgery also failed leaving my stomach and intestines to flip over one another. My colon protruded out my navel. All my internal organs relocated outside my body. I was left to suffer ileus (vomiting my own feces) and ongoing renal failure.

Again I sought the best...only, this time I was looking for the best abdominal repair surgeon. No surgeon could make such a huge repair and without repair I was to die.

Two years later in 2006 my incision reopened spewing pus from an intra-abdominal abscess.

I found a renowned surgeon at Chicago's Northwestern Memorial Hospital to repair me...the largest repair he has performed. I am told I am lucky to be alive.

The most disturbing fact about my dentist is that he held no current controlled substance license at that time. I have also found my dentist claimed specialized dental fields without even passing a simple written test. My dentist's Chicago Dentistry Society profile states TMD as one of his specialties. My dentist denied any knowledge of TMD when confronted with my failed TMD reconstruction.

I was told by dentists to demand a free crown replacement. I was told by a prosthodontist to demand a properly placed reconstruction.

Patti's Advice: It's our duty to check our dentist's licensure through our state's department of professional regulations. Don't be afraid to ask questions!

Run...do not walk from a dentist like this idiot!!!

Read a story about a much more competent and compassionate dentist. Thanks to Patti DePaola for sharing her story.

The surgeon visited on both Saturday and Sunday: Medical tourism to Switzerland

Colleen McGarry's story:
During my four-day quiet stay in a Swiss private clinic, staff stopped by frequently and served homemade meals. The surgeon visited on both Saturday and Sunday. The only paperwork that I had to complete was my signature on the safe deposit box. In this expensive country, my room was $500 per day.

This experience was a bit surprising as my prior encounters with hospitals had been limited to American institutions. Lower malpractice premiums and awards may help keep costs down, but they are not the only factors. In this era of globalization, one wonders why hospital managers do not examine what works well in other countries.

While there is great respect for American medical research and expertise, there is a general fear that American-style health care delivery practices will eventually find their way here. Let us hope that it is the other way around.

Advice to those thinking of expensive elective surgery: Consider medical tourism.

Read another story about medical tourism. Thanks to Colleen for her letter to the editor, reprinted here from the June 15 issue of the New York Times.

A major impediment: Patient expectations

Dr. Gabriel Ledger's note on patient expectations:
A major impediment to minimizing patient testing is patient expectation. My patient with a viral chest cold expects a chest X-ray, to prove that his two-week cough isn’t pneumonia (it isn't), and the mother of my three-year-old patient who tumbled off the sofa expects a CT scan, to prove that everything will be fine with the child’s brain (it will be fine, except for the unknown long-term results of the radiation from the CT scan). When the tests aren't done, the patients leave my E.R. dissatisfied and write complaint letters to the hospital. And, in the rare instance that the viral chest cold later turns into pneumonia, the patient assumes that I "missed it" and wants to sue me. Doctors need to be held accountable for over-testing, but let's not forget how patient expectation affects the issue.

Thanks for Dr. Ledger's letter, reprinted from the June 29 issue of the New Yorker.

Managing the risk: Blue Cross Blue Shield of Texas' rescission of a breast cancer patient's coverage

Robin Beaton worked as a nurse for 30 years, and had retired by age 59. She had insurance coverage in an individual policy through Blue Cross Blue Shield of Texas. Though she had had acne, and a rapid heartbeat, she didn't mention them on her insurance application. However, Blue Cross accepted her application, and she paid premiums regularly. Then, when she was diagnosed with an aggressive form of breast cancer, her doctor told her she needed a double mastectomy. At that time, Blue Cross retroactively canceled ("rescinded") her policy, as she recently testified to the US Congress.

The insurance company said the fact that she had seen a dermatologist for acne, who mistakenly entered a notation on her chart that suggested her simple acne was a precancerous condition, allowed Blue Cross to leave her in the lurch.

Such a practice by insurers, of reviewing the person's health questionnaire, and rescinding policies, upon learning of an expensive condition like cancer, is quite common, said the three insurance CEOs who testified. The congressional panel reported that three insurers had done this almost 20,000 times in a five-year period.


I spoke with a senior spokesperson for Blue Cross Blue Shield of Texas, and asked these questions:

1. What are the steps of the review process routinely used by BCBS of Texas to consider whether current insureds have pre-existing conditions that would affect their eligibility for covered services?

2. Which diagnoses and conditions of an insured do NOT trigger an electronic review of pre-existing conditions?

3. Which diagnoses and conditions of an insured do NOT trigger a review of pre-existing conditions that uses phone calls, manual chart review, or other ways of collecting information?

4. Were BCBSTX employees rewarded financially based on the rescissions they identify?

5. Will your CEO commit to limiting rescissions to only policyholders who intentionally lie or commit fraud to obtain coverage? If not, why not?

This was the formal answer by the BCBS of Texas spokesperson:
"If an applicant for individual health insurance does not disclose noteworthy medical conditions during the application process, coverage may have been offered that cannot be properly supported by the premiums received for that individual's coverage. During our review of such cases, every effort is taken to retain the member's coverage, while still appropriately managing the risk and maintaining affordable rates for all individuals covered by such plans. In fact, Blue Cross and Blue Shield of Texas often allows members to retain their coverage by applying an increased premium rate, adding a specific coverage exclusion rider or removing the individual's coverage rather than the entire family's coverage. As such, a very small percentage of individual members actually lose coverage when compared to the 300,000 members covered by individual plans in Texas.

It is also worth noting that BCBSTX supports health care reform that guarantees insurance for any individual who applies for it regardless of health status as long as all individuals participate in a health insurance pool."

Advice: Share this story, and support a public insurance option as an alternative to private insurance.

Read another story about insurers’ rescissions.

Thanks to Paul Begala for the source article in CNN.com on June 19.

Around an upcoming Bruce Springsteen concert: Patient control over cancer treatment

"At almost any age, there is a desire to exert some control over your environment," says Dr. Holcombe Grier, a pediatric oncologist at Dana-Farber Cancer Institute. "Medical residents need to be thoughtful in doing rounds with me and ask a child, 'I have to listen to your chest. Do you want me to do it here, or do you want to stand over by Mommy?'" Dr. Grier recognizes the importance of respecting young patients' intellects and easing their anxiety by always including them in conversations and decision-making about their care.

When it's clinically safe, physicians will occasionally put off starting a new series of chemotherapy drugs or steroids for a few days so a patient can enjoy a birthday party or other major event. One woman remembers her husband working with his doctor to rearrange a chemo treatment around an upcoming Bruce Springsteen concert.

Advice to cancer patients: Find a doctor who can partner with you against your disease.

Thanks to Saul Wisnia for the source article in the Fall/Winter 2008 issue of the Dana-Farber newsletter, Paths of Progress. This is an excerpt from that article about ways for cancer patients to cope with the ups and downs of treatment.

In New York, it was considered very stylish: Hair after chemotherapy

K. Jensen writes:

Dear Diary,
I lost my hair during chemotherapy treatments for breast cancer. When it came back, it grew first on the top of my head and then later filled in on the sides.

In New York, my new crew cut was considered very stylish – for women. People would stop me on the street, compliment me and ask me where I had it done. When another cancer patient also asked me about my "new do," I tried to explain: "It's chemo."

"Kimo?" she said. "He does a great job. Where does he work? What's his number?"

Read another surprising story about chemotherapy’s effect on hair. Thanks to Ms. Jensen, whose diary entry appeared in the Metropolitan Diary in the New York Times of June 17.

Just before his stem cell transplant: Insurers' recission of coverage

Peggy Raddatz, an Illinois resident, testified before a subcommiteee of the U.S. House of Representatives yesterday that Fortis Insurance Company attempted to drop her brother Otto from coverage just before he was to receive a stem cell transplant to treat his lymphoma. According to Peggy, the company sought to cancel her brother's insurance because it said he had failed to disclose that he had previously suffered gallstones and an aneurysm when he first signed up for his insurance policy.

But, Peggy said, her brother had never been informed of those conditions. They showed up only in a CT scan that was never revealed to him, she said.

Eventually, the company relented after they received weeks of her phonecalls, and pressure to do so from the Illinois Attorney General's office. Peggy said most policyholders who lose their insurance are not as lucky. Indeed, insurers have culled many thousands of such beneficiaries from their rolls.

You can see the brief video of her testimony here.

Do you want the option to choose coverage through the government instead of an insurer's coverage?

Advice: Call your Congressman and insist that the coming health care law include a public insurance option.

Read a story on why President Obama feels so strongly about insurance company denials. Thanks to Patrick Yoest for the source story today in CNN Money.com.

In our darkest time: The role of faith

I've given short shrift in the blog to the role of faith in physical healing and emotional healing after loss, as this reflection by Dr. John James on the recent story by Cori Liptak made me realize:

I liked the story you sent out today about cancer victims/survivors sticking together. Many of us in the Christian faith community ask why there must be suffering and the story you passed along answers that question. Suffering is essential so that we understand the suffering of others. Once I recovered from the acute grief of loss of my 19-year old son to medical errors, I came to a new understanding of what my faith expects of me and where God was during my son's days of dying. God was there in those who came to us in our darkest time and showed uncommon compassion. No one really wants to be there when a child is dying, but God puts them there nonetheless.

And so it happened not long afterward that good friends at church lost a daughter to an accidental overdose of therapeutic drugs. And not long after this a co-worker lost her son for the same reason. Having experienced the loss of a child, I was able to listen to their grief, their doubts, their "what ifs," and their hopelessness. Because of my suffering I was able to minister to them in ways that someone who had never lost a child could never hope to do. It is promised to us that we can turn all things to good if we love God. I would never wish the death of a child on anyone, but even this can be made the basis for a good purpose in life.

I've concluded that his world was created intentionally as an imperfect place where suffering abounds. My faith tells me that we are to love one another, but there would be no need for love if there were no suffering. Suffering is the vacuum into which the Breath love enters to lessen the suffering. Unfortunately, the Christian faith community has come to suppose that by sufficient praying and righteous behavior all will go well. That is obviously not the case, but my fellow Christians keep at it supposing that somehow God is delivering specific blessings when in fact, God expects loving responses to others, and assumes that we are prepared to suffer and carry our cross as life hands us suffering.

John wrote the book "A Sea of Broken Hearts" after his son's death due to medical errors. His comments about the beneficial effects of suffering reminds me of an observation by Rabbi Harold Kushner in his book, "When Bad Things Happen to Good People." Rabbi Kushner's young son Adam had progeria - a rare, debilitating and fatal illness. Rabbi Kushner said the suffering certainly deepened his own spirituality - but that the rabbi would gladly give up all that gain to have his son back....

Advice to those who’ve experienced a tragic loss: Faith, and praying with others in your community, can strengthen your purpose in life.

Read another story on the healing role of faith.

If they don't reach back: Hand-shaking etiquette for immunocompromised patients

George Sarnoff's question:
My wife’s immune system is compromised because of chronic lymphocytic leukemia. How can she tactfully refuse to shake a proffered hand without going into medical detail?

Philip Galanes' advice:
I walked in your wife's wedges, George, and tried avoiding shaking hands myself. It was no picnic: When people extend their hand in friendship, they want it shaken, an pronto!

At first, I kept my hands in my pockets and smiled extra big in lieu of shaking, which didn't work at all: Still Life with Outstretched Hand. Awkward! Next, I claimed a bum wrist, which led to a silly web of lies about a phony tennis injury, and my friend remembered that I play left-handed and we shake with our right.

So the best I can offer is a generic statement like, "I'm a little under the weather." It's vague and true. And if the would-be shaker is bold enough to inquire further (and many will), just say: "Oh, that's boring. How are you?"

So with apologies to Diana Ross, reaching out to touch somebody's hand isn't the only way to make the world a better place. Let's try a little understanding if they don't reach back.

Read another story about privacy.

Thanks to George Sarnoff for his letter, reprinted here from today's issue of the New York Times.

Unnecessary, painful and redundant: Costly care at the end of life

Margie Parko’s story:
During the last year and a half of my mother-in-law's life, her medical care incurred huge medical expenses as the quality of her life declined. She was in her late 80s, and many of the hospitalizations and tests she endured were unnecessary, painful and redundant. Her doctors did not communicate so her medications were often incompatible.

Thousands of dollars could have been saved if her medical records had been electronic and available to both the hospitals and the doctors who were treating her. I believe that in many high-cost areas, making minor changes in patient care and reducing redundancy would improve costs considerably.

Advice: Ask if the hospital has a computerized physician order entry system before you let a family member be hospitalized there.

Read another story about another unnecessary healthcare cost that an electronic medical record could have prevented.

Thanks to Margie for the source letter to the editor in the NY Times of June 10.

I have a friend who understands: Friendship among cancer survivors

Cori Liptak's story [excerpted from this article on Cori Liptak’s work]:

Survivorship and treatment completion pose their own challenges. Brain tumor survivors struggle with multiple medical, cognitive, and physical challenges. These impact school, work and friendships; many struggle socially. To help meet some of these challenges, I've started a program called STEPS (Success Through Education, Psychosocial Support and Socialization) that holds a dinner once a month for brain tumor survivors and their caregivers. Patients know that they're going to see people who are like them and understand what they're going through, which is what has made people come every month. As part of the program, we took a group of brain tumor survivors to Project Adventure, where they worked as a team to overcome challenging tasks like climbing a tree and walking across a wire. One girl who is legally blind wanted to try the task, and the group worked together to help her get up the ladder and to the tree. They did this solely with communication and absolute trust, and it was successful because they all really care for each other. These are people who have established friendships outside of Dana-Farber. Once you've seen a patient connect with another patient and be able to say, "I have a friend who understands," the power of that type of success goes beyond anything I can really describe.

Advice: Find friends who have survived the same crises you did.

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

The Impact of Medical Error on Family Members: A study

Sherry Worsham, a graduate student at Harvard, is conducting a study on the impact of medical error on family members. She is looking for adults with a family member who experienced an injurious medical error between Jan. 1, 1999 and Jan. 1, 2009 to answer a 30-minute online survey. You can learn more about it here; type in CAT as the password.

Advice to injured patients and their family members: Look for opportunities to tell your story.

Thanks to Helen Haskell of Mothers Against Medical Errors for passing this on.

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