Part III: Case Study Ellen— Shades of Patient Dumping

Ellen's daughter, Ann, had been told that Ellen would be moved on Monday to a Rehab facility and so Ann had gone to visit other family members in Delaware to discuss the situation with them. Ann felt that her mother was in a safe place--- Georgetown University Hospital.

Saturday at about 6pm I was called by a representative of Georgetown University Hospital (they meant to call Ann) and was informed that Ellen would be moved that evening to the Rehab facility.  I told the woman that I was the friend and not the daughter and thought it was a terrible idea to move her.   It seemed that now that the insurance had been approved that they were going to move Ellen to the Rehab facility. I let the person who called me know that the person she needed to talk to was Ann (Ellen's daughter) and gave her the correct number to call.  

How had this situation come about?  It seems that Saturday during the afternoon a physician called Ann to confirm the DNR that Ellen wanted and Ann said yes she understood that is what her mother wanted. There was no mention that she was going to be moved that evening.

The move on Saturday was totally unexpected and far from good or responsible care.  Ellen was weak, fragile, and readying to go to sleep when she was disrupted with the news that she would be moved.  A person too weak to go home and yet moved on a Saturday night. One can only imagine the enormous amount of stress this put on Ellen.

Is this patient dumping.  How could anyone have allowed that?  This is not the way that patients or their families should be treated.  

Hispanics and the Undocumented.

A few months ago I presented at a conference at the National Institutes of Health (NIH) and was reminded by the comments that people make that too often what people think about Hispanics is framed by their perception of undocumented people.   The assumption is that all undocumented persons are Hispanics and if there are alot of Hispanics...it is probably because they are undocumented and shouldn't be getting services anyway.

The numbers are pretty straight forward.  We know that there are 313 million people in the U.S. and about 55 million are Hispanic.  Of the estimated 11 million people in the U.S. that are undocumented fewer than 8 million are Hispanic.  This means that assuming every undocumented person is included in the count of 55 million Hispanics that 47 million Hispanics are in the U.S. legally. But people like having myths and scapegoats.

One of the proposed reasons for the rise in health care costs is that "all those" undocumented persons are using health resources.  The facts according to the Pew Hispanic Center indicate that 41% of undocumented persons have health insurance and those that do not have health insurance either pay out of pocket or tend to avoid the health care system.  The goal of undocumented workers is to work and not be noticed.  That is why going for any type of health service, especially any which may require an interface with a government agency, is avoided.

So do we have a health crisis in the U.S.?  Most definitely.  But don't blame it on persons who are undocumented.

Part II: Case Study Ellen— Water, nutrition, and the right mattress

My 83 year old friend Ellen was admitted to the hospital because she was dehydrated and very weak.  While in the ER I was told that she also had the beginnings of a bedsore. And while I was glad that she was admitted there were some observations that raised concerns:

• Just like in the ER health care professionals end up spending more time in front of a screen than in direct patient care.
• On Day One Ellen was given a large container of ice water with a straw so she could drink water.  The person who brought it did not realize she was too weak to either lift the container or suck from the straw.  I asked that she be given water in a cup and it was written on the board.  When I came back on Day 2 there was a pitcher of warm water that she could not lift and the glass. I got her ice water and filled her cup.  During the time I was there she drank 8 ozs of water.  I told the nurse how much she had to drink but I don't think anyone was really monitoring her intake even though the reason she was admitted was dehydration.
• Ellen had asked for tissues and while I was gone they left her two boxes---unopened.  I had to open one for her the next day when I returned.
• Since Ellen is very weak she is not able to eat very much.  I asked if they had Ensure and they said yes. I asked that she be given chocolate Ensure because she will usually drink it.  She was given vanilla.  When I inquired I was told, "... they send what they have."  It was not till Day four that she finally got the Chocolate Ensure.
• Although the beginning of a bedsore was pointed out to me while in the ER, Ellen was not given the special mattress to decrease the likelihood of the bedsore getting worse. 
• The care team is supposed to write their name but the only ones who did so were the nurses.

Better than most, I understand the stressors in health care, but some small low cost actions ( water, edible food, the right mattress) would definitely make the patient experience one conducive to getting better.

Part I: Case Study Ellen— If It is Weds. Night I Am in the ER

Over the past four weeks I have spent three Weds evenings in the ER with a friend (two times with Ellen and one time with David). One time at Sibley Memorial Hospital (part of Johns Hopkins Medicine) and twice at MedStar Georgetown University Hospital.  I wish that I could say that one experience was better than the other but the reality is that neither ER was what I had hoped.  They both shared some concerning similarities:

• Both had staff who spent more time in front of a screen than with patients.
• It was hard to know who could answer questions.
• Getting admitted into a room required waiting, and waiting, and waiting.
• There was no privacy...everyone hears everything...so all the HIPPA stuff seems irrelevant.
• Cleanliness did not seem a priority.
• Getting a glass of water was challenging.
• The transition from the ER to a hospital room took too long.

The major takeaway is that people go to the ER when they do not know what to do or when there are no other systems to take care of them.  That certainly was the case for the patients who's assessment I could hear through the curtain that separated us: the person who had a problem with alcoholism and was recurring visitor to the ER, the person who would go to a psychiatric unit because she said she had no place to get her  medication, as well as the person who was in a nursing home and prone to falling.  

Everyone waited patiently because it was clear that the ER needed help. 

Gastric Surgery for Diabetes

Type 2 diabetes is a complex condition that we are only beginning to understand, type 1 diabetes is an autoimmune disease, and type 1.5 is a new condition that we are beginning to study. Nevertheless, the media has latched on to two new medical studies and named gastric bypass surgery the new diabetes cure for type 2 diabetes.

I understand that people want quick solutions. I also know that one's relationship with their weight and stomach is complex. But your stomach is not just part of your "beauty" or "physique" nor is it just about digestion. Your stomach is the home for the many good microbes you need that help control your endocrine and immune systems.

Keep in mind that your body has 10 trillion cells and 100 trillion microbes that all work to keep you healthy. How exactly these microbes work is part of an evolving science. Some good information on the microbiome was provided in a recent Wired magazine. You can also learn about the brain in your gut by viewing the TED presentation by Heribert Watzke: The brain in your gut.

So anyone who encourages the cutting out of parts of the stomach as the answer does not understand the relationship between the stomach and health. The surgeons who advocate cutting do not address what happens to your microbiome, i.e., the healthy bacteria in your gut, that we are now learning are so important to our endocrine and immune systems.

Gastric surgery is not the answer.

Johns Hopkins Part 3: Getting the Electronic Health Record (EHR) Right

Today I received a call from Stephanie L. Reel, Vice Provost for Information Technology and Chief Information Officer, The Johns Hopkins University. We discussed the importance of having an EHR system that worked for health care providers and patients. I suggested that she talk to some end users to see what actually works and does not work.

My experiences demonstrated how the EHR system can become a burden for all levels of health care providers and patients. This becomes exacerbated when the productivity of health care providers is measured and calibrated by the inputs and metrics that are captured as part of the EHR. It seems that with all the numbers that are crunched the qualitative aspect of health care interactions are lost. Moreover, the value of the interpersonal dimension of care is diminished if not obliterated by just counting the procedures that are quantitative, i.e., easy to measure. As a result a health care provider ends up spending more time in front of a computer than in front of a patient. This is not what was intended.

All health care providers and patients want an EHR that works. Health care providers need to have an EHR system that helps them input, review, and correct patient information accurately and easily. Patients want information that is accurate so that the precious time with their health care provider is not spent making corrections.

In our case my husband has an excellent physician and I want to make sure that the tools that are at his disposal are useful tools and not impediments. I also want to make certain that during those visits that by their very nature are stressful, that time does not have to be wasted because the EHR failed to do what it was intended to— be a vital tool for patient safety by reducing the likelihood of medical errors.

Johns Hopkins Part 2: Is This Service Excellence?

The initial response to my email (see earlier post) was from a staff person who was supposed to respond to patient issues. I thanked her for her call and emphasized that it would be better if I received a call from a more senior person who could address my concerns with their EHR system and the ease of its use.

Later I received a call from Ms. Becky Zuccarelli, Director of Service Excellence, who informed me that because of HIPPA requirements that she would need a release before she could talk to me about the patient issue. I informed her that this was not a HIPPA issue as it was not about a specific patient but about their system. While she tried to do what she was trained to do, she was unable to understand the broader implications of the failure of their EHR system to either engage physicians or other health care providers or be responsive to the needs of patients. Ms. Zuccarelli's focus on service excellence missed concerns about system adequacy.

Part of the success of any new system is listening to feedback from users and fixing the problem. Handling a situation is not the answer. I emphasized that they need to fix their EHR system before they kill someone and the fatal mistake ends up being chalked up to medical error rather than avoidable system failure.

I am still hoping for a meaningful response and will keep you posted on what happens next.

Johns Hopkins Part 1: The Electronic Health Record (EHR) that Isn't

On Friday, September 16, 2011 I sent the email below to Dr. Edward Miller, Dean and CEO of Johns Hopkins Medicine. Let's see the response I get:

Just to share with you two exchanges I had with your staff which indicates a failure in the design and implementation of your EHR system.

1. When I brought my husband in for his regular visit, once again he noted that he did not take the medicines listed on the printout. The response was that it was too complicated to change what was there as it would take too much time and anyway his medicines were properly listed in the notes.

2. When I reviewed the letter for my husbands scheduled infusion his medicine was incorrectly listed as Rituzan. When I called to get it corrected I was told that it was a mistake in the coding but that he would get the correct medicine..and moreover it has been incorrectly listed in the system since March when he first started to get his infusions.

Having worked on many aspects of getting legislation passed with respect to EHRs I was surprised and disappointed by the responses I received. EHRs are for more than billing; they are essential for patient safety. If someone is brought into the ER do you think the staff in the ER have the time to read through the notes to know the medications that a patient has taken? The responses of your staff reflect the failure of your EHR system to meet the needs of the health care providers at the front line as well as those of the patient.

I hope that you are able to make your system work better before someone gets hurt. I look forward to hearing from you about how you intend to fix a system which is not working as it should.

Sincerely,

Jane L. Delgado, Ph.D., M.S.
President and CEO
National Alliance for Hispanic Health
1501 Sixteenth Street, NW, Washington, DC 20036-1401
(202) 797-4321 Executive Office | (202) 265-8027 FAX
jdelgado@hispanichealth.org | http://www.hispanichealth.org

Public Health and Science

There is an enormous gap between the public health community and the science community. Public health is driven by large data sets and averages. Science is moving into the realm of each person being their own universe of 10 trillion cells and 100 trillion microbes. How do we use the rich data we are able to analyze about the individual with health at the community level? We need to benefit from both.

Public health must become better at measuring multiple factors at the same time while understanding that communities are more than the composite of unique individuals factors. Our analysis of communities and public health needs to keep up with what science is teaching us about individualized health and systems.

For Cinco de Mayo No More Latino Policy Day

When I was invited to a recent gathering for a Latino Health Policy Day I thought I was reading some script from the 1980’s that read, “In order to reach the Hispanic community invite a group of Hispanics to meet with you one day.” Are we so out of touch with each other that we need Latino Day to hear from Hispanics? I wondered if there was an Anglo Day, and only on that day would the effort be made to include Anglos in policy.

In health to make good policy we need to understand the entire community we serve, and it needs to be a part of how we do our work every day. Today about 1 out of every 6 persons in the United States is Hispanic. Also consider that the combined total population of Canada and Australia is 57 million which is about the size of the population of Hispanics in the U.S (54 million*).

Just not on Cinco de Mayo, but everyday our policies need to take everyone into account and make it possible to tailor what we do to meet individual needs. To have good policy it means that every day is Hispanic Policy day, African American Policy Day, Anglo Policy Day, Women’s Policy Day, and so on. If we do not include all communities we make policies that are bound to miss the mark.

*Unlike Census and others when I give the population of Hispanic persons in the United States I include the 4 million citizens who live in Puerto Rico.

New data has surprising results

Today the news is that salt is okay and yesterday it was that BMI was not a good measure of health. The eagerness to make news sometimes gets in the way of being informative. One day’s science news is trumped (does that have new meaning today?) by the next day’s new discovery. Typically the data are described, the findings are made into pronouncements, and the need for further research is discussed. The reader is left wondering which facts were correct. Is it any surprise that consumers are confused by and distrusting of science? When information is presented in a way that is unclear people just keep doing what they are most familiar with and ignore the information generated by the new finding. We need to make science relevant to the people we are trying to reach.

Discussions we need to have

On July 23, 2010 Senator Webb wrote an Op Ed Piece for the Wall Street Journal, "Diversity and the Myth of White Privilege" that inspired me to write a Letter to the Editor. I was pleased that it was published today (July 28, 2010) as it provided a different framework for understanding why so many of us do the work that we do.

Senator Webb seems fixated only on slivers of history of his home state of Virginia and not the realities of the nation. He ignores that Spanish settlers were on the continent before Jamestown or Plymouth Rock were settled. But the issue goes beyond who was here first.

What is most damaging about his commentary is that it suggests that the only reason we should help African Americans is because of past injustices; and, that no other community has suffered. There are thousands of incidents from the past and the present that depict a different reality. In health those realities get played out in how patients get information, the decisions we make about treatment, and so much more.

We need to understand our beliefs about others if we are going to get past them and provide quality care to all. To save health care resources you need to provide a patient with the care that is needed and not one which is based on false assumptions.

Field Research 101

It is Valentines’s Day, Chinese New Year, and the beginning of a new decade so there is much to celebrate. Last year was more difficult as those I love spent too much time in hospitals. As I was with them it was an opportunity to watch up close and experience the many facets of our health care system. I found that I had to find the place in myself where I could be calm when all I wanted to do was scream, “Do you hear what the patient is saying?”
It became very clear that the clinical nuances of the individual patient seem to get lost when health care providers focus on their clinical guidelines and not on the specifics of the person in front of them. I watched as very caring and smart providers were rushed and wanted to take the path that was most familiar to them.
Fortunately, on my IPhone I have Epocrates™ and I used it to show how the patient may have a negative response to the medicine they were going to give him. I made the health care provider take extra time and double check. They took the time and checked their system and the medicine was not given.
What would have happened if I had not been there? “Medical Error” may have had another person to claim. Our systems can be brilliant but they can also blunder. The difference between one and the other is usually the act of one human being.
We need health insurance reform for certain. We also need to change the way our health system functions. That would be something we could all celebrate.

The Need for Plain English and Page Limits

Since we are hitting the reset button on health insurance reform, Congress should also commit to voting out a bill of reasonable length and in straight forward language. After all the U.S. Constitution is an eloquent 4,400 words. Surely Congress can commit to writing a health insurance reform bill that is of a length and language that would allow all Americans to understand the bill. The new process should be that at the outset all legislation had to be written in plain English and with a page limit for the document. A maximum length of 50 pages would be read by most. I have been informed by those whom I trust that laws are necessarily long because they have to cite all the other laws that are being changed. My response to that necessity is to add those as footnotes. Having a long document means that it is only read by a limited set of people (i.e. lobbyists). Of greater concern is that the longer the document the more it becomes burdened by special inclusions and carve outs.

The legislation on health insurance reform should be something that we all can read and understand. It should be concise and understandable by those folks who are most clearly impacted by it; that means most of us. To have real insurance reform can be simply put: we all must have it, exclusions or rates based on pre-existing conditions, gender, or age will no longer be allowed, and because we are a responsible society there will be programs to make sure that persons of modest means can buy into a plan. With that said, that leaves 49+ pages for more details.

Better outcomes for patients ignored

I posted this to the National Journal Healthcare blog this morning:

I waited to write this blog because I was hopeful that someone would comment on the July 2, 2009 New England Journal of Medicine article, “The Effect of Medicare Part D on Drug and Medical Spending.” What Zhang, Donohue, Lave, O’Donnell, and Newhouse reported was that “Groups that had no or minimal drug coverage before the implementation of Part D had reductions in other medical spending that approximately offset the increased spending on drugs, but medical spending increased in the group that had more generous previous coverage.”

These findings bring to the forefront the reality of our health care system - just because you do the right thing for a person’s best health does not mean that it will reduce cost or have the same effect for everyone. We can all agree that it is better to take medicine than to have “other medical spending” because it means that you are able to manage your disease. This was the outcome for those who had the least coverage before Medicare Part D. For those who had more coverage the findings are harder to interpret.

In the same way that Medicare Part D was the right choice for patient health, expanding health insurance coverage to all, including preventive care coverage, is the right thing to do now. But we must be honest. Just because it is the right thing to do does not mean it will save money.

The key point is that health care is complex and deserves more than sound bites especially because it is about life, death, and the difficultly in measuring the quality of life.

Health Care Costs: More than Dollars

I posted this to the National Journal Healthcare blog this afternoon:

Today’s New York Times article ”In Health Reform, a Cancer Offers an Acid Test” is the type of analysis and discussion that makes me shudder when I think of how easy it is to misuse the findings from proposed comparative effectiveness research when the focus is just cost. The Times has a chart comparing the average cost of the five types of treatment for prostate cancer. What is lacking is how each procedure impacts the life of the person receiving the treatment.

I propose that all those considering health care reform remember to take the perspective of the patient and health consumer. For each procedure what needs to be included as part of any cost or effective analysis there is also a new measure that takes into account consumer’s assessment of PAID (pain, absence from work, invasiveness of procedure, and disability.) for each procedure under consideration. Patients need more information but it is more than just cost of the procedure.

Reading between the lines

There has been much hubbub about the New Yorker article comparing El Paso to McAllen and virtually nothing about Richard Cooper’s article, ”States With More Health Care Spending Have Better Quality Health Care: Lessons About Medicare.” (December 4, 2008 Health Affairs – Web Exclusive). It is easy to understand why.

The New Yorker analysis resonates to the mythology that pervades thinking about health - that there is great variability in costs of health care because in some areas physicians are not doing what is good treatment but rather taking actions that will only increase their income. The suggestion is made that where there are high Medicare costs it is because there is much waste and the suggestion is stretched to explain all the waste in health care.

Cooper’s analysis however looks at all health spending instead of the slice represented by Medicare data. Cooper finds that, “Medicare spending per enrollee correlates poorly with total health care spending per capita.” He takes it one step further with the data he presents to state that regional variation in Medicare is not a valid measure of how well the health care system is working.

My question is simple - then why do we keep using Medicare data the way we do?

Best Outcomes for All

I just finished the first edits on my book (look for it in early 2010) and am so glad that I will be able to write my blog again. The best part about writing a new book is that it is an opportunity to look across sectors and see what is on the horizon that will shape our health and well being. In many ways the new developments left me hopeful. At the same time it became clear that it was time to rethink some of the terms used by the health cognoscenti.

Let’s begin with discarding the conceptual framework of ED (not the one of blue pill fame) but as in “Elimination of Disparities” a term which over the past decade has had increased popularity. Too often ED became the new code for addressing the health care needs and concerns of Hispanics, African Americans, Asian Americans, Native Americans, and other communities.

The research that ensued documented the differences in care and treatment. With ED too many made the assumption that the best treatment would be the same for all. I knew that was a mistake because too often the goal of equal treatment did not sufficiently focus on outcomes.

There are differences among individuals and the best health care for a non-Hispanic woman in Minnesota may not be what is best for a Latina in Santa Fe. If fact, there is a growing body of evidence that the Latina is less likely to practice unhealthy behaviors like smoking and is likely to live longer that the woman in Minnesota.

As we enter one of the most robust debates we have had on health care, the need should not be to standardize treatment but to design systems that achieve the best outcome for all (BOA). The goal should be “Best Outcomes for All”; not on the average but at the individual level. That is something we can all get behind.

Saving money is not always good news

It will be refreshing when I go to a meeting and people present data in a way that tells the full story. Take the recent thrown around fact that we have spent less money on Medicare Part D than had been projected. Isn’t it great that we saved billions of dollars? The reality is that half of the savings come from the failure to enroll all of the modest income persons who are eligible for extra help in paying for their medicines. While the savings may sound good, the challenge remains to enroll all those eligible in a program that helps them get the medicines they need.

Hispanics Have Highest End-of-Life Costs

A study published this week in the Archives of Internal Medicine found that in the last six months of life cost for care for Hispanic patients ($31,702) was 60% higher than for non-Hispanic white ($20,166) patients. I have been there at the end-of-life for four people who were very close to me. If the costs are higher for Hispanics than for non-Hispanics whites I would say it is because no one took the time to talk to the patient and the patient’s family.

Hispanics are the group least likely to have a regular source of care. This means we are also less likely to have a relationship with a provider who understands our wishes on end-of-life issues. Ensuring the dignity and comfort all people deserve at the end-of-life is one more reason why health reform is so important. Hispanics must have access to health care providers who can understand their patient’s language and cultural values and can support families in their decisions about end-of-life care. It’s a simple matter of quality of care.