Apr 3, 2009

Putting It into a Way Patients Can Understand

The dance performances that I look forward to every year are performances for the Harvard China Care kids at their weekly "Dumplings" activity Saturdays and their annual Children's Day Carnival. The kids are just too cute!

In an hour's time, I have to get the kids, ranging in age from 3-8 years old, excited about cultural dance and teach them a short routine. The excitement part is easy. Rhythmic music, extravagant costumes, flashy props, and the mere fact that I'm someone new is usually enough to generate excitement. Teaching is where I have to get creative.

Forget about formal dance terms. Plie, chasse, fifth position, and even the concept of beats often don't make sense to these kids. What do I do? I translate these dance terms into words and concepts they can understand. I tell them to not just stand on their toes to releve with their hands above their heads, but to reach for the stars. Instead of telling them to maintain a happy expression during the fast moving section, I tell the kids to remember to smile at their mommys and daddys who will be watching them.

I also constantly fish for feedback. I tell the kids to "Follow me!" or "Show me!" If there are any kids left standing still with a confused look on their face, I repeat the movements and try different analogies. For example, instead of smiling at their parents, I tell them to look for the funniest person in the audience. After the short lesson, we give a quick performance for the parents and China Care mentors. Performing, teaching, and then watching the kids dance is such a rewarding experience! It even beats dancing for audiences of over 1000 people!

Pauline Chen of The New York Times, recently wrote two pieces that I feel should be read together. The first piece is about connectedness as a measure of the strength of the doctor-patient relationship (click here to read!). In the piece, Chen refers to The Annals of Internal Medicine study led by researchers at Massachusetts General Hospital, which found that 60% of patients had a "connected" relationship with their doctor, 1 in 3 patients were "connected" to a practice of doctors, and 5% of patients were not "connected" at all. The study suggests that patients who are "connected" with their doctors receive better care.

The second piece is about health literacy and the large percentage of people who do not follow a doctor's advice simply because they do not understand it (click here to read!). Chen reports that nearly half of all Americans have difficulties obtaining, understanding, and acting upon information important to their health. The story Chen recounts of a former patient called Jack illustrates the great tragedy that a lack of understanding can lead to.

The messages of these two pieces intuitively make sense. As Chen says, for patients that she has known for a long time, she knows about their family and work and the patients know about her family and work. This allows for doctors to establish what Chen calls a clinical baseline. Providers then are quickly able to sense whenever the patients veer from that baseline.

It's quality interactions that help achieve this sense of connectedness between patients and their providers. In Chen's article, Dr. Steven Atlas talks about how care should be patient-centered. To illustrate this, Dr. Atlas suggests different models of care including patient interactions via e-mail, instant messaging, and phone calls all in addition to regular visits-- adapting the care model to the patient rather than trying to fit the patient to the provider.

While I believe exploring different models of care to adapt the care model to the patient is an important component of making care patient-centered, patient-centered care also puts a lot of the responsibility of care on the patients' shoulders. Shared decision making is what many call it. But, how do patients make good decisions if they lack understanding? How do patients and doctors achieve "connectedness" without understanding?

These questions become extremely important when treating underserved populations. How do you establish connectedness or impart the importance or urgency of medical advice if the patient doesn't speak English, works several jobs, does not have a reliable source of transportation, and only seeks medical attention when absolutely necessary? How are providers supposed to deliver the best possible care to these underserved populations? Simply waiting for these patients to come knocking or waiting for them to ask questions is not delivering patient-centered care and not delivering the best care possible to these populations. Providers need to mold care to the lifestyle of the patients and in a way these patients can understand.

As an Asian American, the difficulties minorities face in receiving the best care is a reality that I see often. Just a few months ago, a very close family friend was admitted to the hospital with an abdominal aortic aneurysm. My family friend, whom I'll call Auntie Ling, is an immigrant from Taiwan. She has been living in the United States for over twenty years. In that time, Auntie Ling has developed a strong support network of friends from the local Chinese school and local Chinese church. We are her extended family.

When we went to visit her in the hospital, Auntie Ling explained to us her various treatment options. She could either wait out the aneurysm and take blood pressure lowering medications or she could undergo surgery. Auntie Ling's husband then interjected that he did not want her to have surgery because there was only a 7% survival rate in the surgery. While we were visiting, the doctor came in for a short check-up and we were told to leave. We did not have the opportunity to discuss her condition with the doctor. Auntie Ling and her husband can both speak English more or less fluently, but did they both really understand what was going on?

Auntie Ling was discharged from the hospital on meds after a few days, but by the end of the week, she was back in the hospital because her pain and nausea had worsened. By the next week, she was transferred to another hospital for surgery. Her sudden decision to have surgery baffled me. My mom later explained to me that one of Auntie Ling’s friends from church had asked for clarification on the risks of surgery and found that Auntie Ling and her husband had misunderstood the survival rate. The surgery had not a 7% survival rate, but a 7% failure rate. That's a completely different message!

What kind of improvements could we have made to avoid this confusion? Auntie Ling and her husband demonstrated the ability to speak English, but this misunderstanding still occurred. Several national campaigns including Speak Up and Health People 2010 address health literacy and several reports including the 2007 National Healthcare Disparities Report and the National Quality Report recognize that significant gaps in care to underserved populations still exist.

On an individual level, all patients need to feel empowered to raise questions and providers should constantly check back for understanding. Recommendations and advice need to be framed in a way patients can understand. The National Healthcare Disparities Report and the National Quality Report recommend increased efforts of cultural competency training. Actions related to cultural competency are calling for language interpreters and using any means possible to communicate including pictures and diagrams while maintaining a respect for each patient's beliefs and culture. Families should also be involved in understanding when appropriate. Rather than "Do you understand?", perhaps "Can you please explain back to me what I have just said, so that I know you understand?" is more helpful.

What efforts can be made on a macro level to improve the connectedness between doctors and patients and improve the health literacy of all?

When it's health that is at stake, taking the extra time to ensure understanding by putting information into a way that patients can understand seems like a wise investment. When a patient returns with improved health because he/she was able to obtain, understand, and act upon good health advice, I'm sure that is just as, if not more rewarding, than teaching kids how to dance!

Mar 30, 2009

International Forum on Quality and Safety in Healthcare - Berlin

From the 17th to the 20th of March, nearly a 100 students and teachers/mentors from 9 different countries participated in the BMJ & IHI International Forum on Quality and Safety in Healthcare. Being a part of this group of enthusiastic group, truly made the Forum an unforgettable and inspirational experience for me, and it gives an extra boost when it come to spreading the word about the importance of quality and safety in health care to your peers back home.

The Forum had nearly 2000 participants from 65 different countries alltogether, all meeting up to share their experiences from and to learn about initiatives to improve the safety and care for patients worldwide. The spirit of the Forum is very idealistic, these people gather with a common objective, to take an active part in changing health care systems, to insure that every single patients recieve the best possible care.

Dr. Don Berwick adressed the issue of Patient and Family Centered Care in his Keynote on the 18th of March, sharing his vision about a health care system that rather would look upon patients as individuals, with different needs, rather than an unpersonal mass. This represents a different way of thinking, which in my view is what the improvement-movement is all about. To redefine the way we provide healthcare, and actually acknowledge that one might need to think outside the box to do it. This is something that struck me and many of my peers during the four hectical days in Berlin. Working on improvement and safety isn't necessarily very difficult, but it requires that you get a different perspective on the job you are doing. One of my favourite quotations from last year, which I heard again in Berlin is "We all have two jobs, one is to do the job we're trained to do, the second one is to constantly improve the job we're doing."

The improvement work that is going on in developing countries also impressed me. IHI, USAID among others, are running projects in collaboration with local authorities in several low-income countries. To see what they have accomplished, e.g. with the distribution of HAART-medication, and on maternal health should be a big inspiration for all of us, I know it is for me. It also shows one of the big strengths of the methodology of quality improvement and safety, it is universal and applicable to most health care systems.

Being given the possibility to take part of this more or less idealistic movement is an opportunity I wish all health care professional students would get. This sounds like utopia, but it is actually possible, through the IHI Open School. That however requires advocates, both students and teachers, that share their experiences and get the message across to their peers. That is something all the students and their teachers agreed upon on the very last day; we're stronger together, and we can contribute to make a change for the better.

Mar 29, 2009

Our first meeting

Hi there. This is my first stab at blogging. I wanted to tell you about our first meeting of the IHI Open School at Beverly Hospital. We have a non-traditional chapter in that our chapter is sponsored by a hospital, and has three nursing schools associated with it. We have only been organizing since the Congress in January, and I am very excited about the membership so far, and even more, how we can lay the foundation for this chapter for the fall. During our first meeting, we got to know each other and where everyone is in their nursing programs. We viewed a few videos that are available on You Tube, and then started a discussion about some of the things in healthcare that we have seen that need to be fixed. Many of us shared not only experiences that we had as clinicians, but many shared experiences from the perspective of being patients and family members of patients. It was amazing to me the insight that everyone had not only into the things that didn't work well, but the systems that needed to be improved. I am looking foward very much to getting to know everyone better, and for ideas surrounding improvement projects that will be meaningful to those involved!!!

Julie Holden, Beverly Hospital Chapter Leader