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Posted by on in Current Medical Issues
I hope you are all having as glorious a summer as we are having in Seattle. Its sunny, green, and a great temperature! 
 
I have been dreaming and having frequent conversations lately about a better way forward — for healthcare, our planet, and human relations in general. One of the issues that is often raised about our healthcare system is that the voice of the patient is lost, and this is definitely a focus of healthcare advocates. Narrative medicine is a discipline that has arisen to address this. Wikipedia defines narrative medicine as follows:
 
Narrative medicine is a wholesome medical approach that recognizes the value of people's narratives in clinical practice, research, and education as a way to promote healing.
 
Columbia University Medical Center Program in Narrative Medicine describes the program by saying it “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.” The fact that such a respected university has a program in Narrative Medicine shows that this field is gaining traction, as well it should. The story used to be a primary concern; now we have to name a new discipline in order to bring it back. 

What is intuitively clear is that feeling that we are heard feels much better than not, and there are studies that show how this impacts our healing. Additionally, listening to the story can be lifesaving. Here is an article describing an incident that, while not lifesaving, was tremendously impactful in terms of preventing injury and pain.
 
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I was really anxious.  My father’s legs were getting weaker and his pain was worsening.  He had been having pain for quite a while, and that pain was often disabling in its severity, but the weakness was alarming.... Read more.  
 
As “modern medicine” evolves, the amount of data available has grown exponentially. Narratives are increasingly neglected in favor of facts and figures, thought to be more scientific and objective. I cannot disparage all the knowledge we have gained, but the stories and our sense of human connection, “seeing” our patients and clients, cannot be sacrificed in its favor.

Here is a great story from Intima the Journal of Narrative Medicine written by a professor at the University of Washington, Josephine Ensign, an adjunct associate professor and a leader in the field of narrative medicine.
 
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Medical Maze
by Josephine Ensign
Late one November night in 2000, I drove myself to the ER at the UW Medical Center... My legs had been tingling and getting progressively benumbed over the past week. The numbness started in my toes and now reached my butt and groin region, plus my toes were turning blue..... Read more.  
 
The take home message from this article is clear.  We need supportive data, but we also need the patient narrative. Both are critical to health and healing, and something important will be lost if we ignore either one. 

If you'd like to hear more from Josephine Ensign, she will be a speaker at the National Association of Healthcare Advocacy Consultant’s (NAHAC) National Conference in Seattle, November 16 - 18th, where we will be focusing on narrative medicine and interaction for the first afternoon. For more information about the conference, including additional speakers and registration, please visit the NAHAC website.  
 
Next month, join me as I take a look at integrative medicine, another discipline that focuses on the patient / physician relationship, and is not well understood by most people. 
 
Best of Health,
 
Sima Kahn, MD
Founder, Healthcare Advocacy Partners
 

Posted by on in Current Medical Issues

Happy summer everyone. I am relishing the beautiful weather and flowers, as well as the fresh vegetables and long hours of daylight!

I have been thinking a lot recently about how things are not always as they appear; often you need to dig a little deeper to find out the truth. So much of what we read these days is hype or selective reporting. Sadly, this is extremely true of medical information. I recently read an article about how Big Pharma (the pharmaceutical industrial complex) has made this into an art of sorts, and that if you take what you hear at face value, often you will be deceived.

More importantly, this topic came to mind because of an article that has received a tremendous amount of press in the media after it was published in the British Medical Journal.

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Medical Error - The Third Leading Cause of Death
by Martin Makary and Michael Daniel 

Dr. Martin A. Makary of Johns Hopkins and research fellow Michael Daniel wrote a paper stating that medical error is the third leading cause of death in the US. This is quite alarming, and in medical circles has led to quite a bit of head scratching—this is not what any of us have experienced, so is it really the case? How could we be so unaware of the third leading cause of death?

Prior to this paper the data used to discuss rate of death from medical errors was from 1984.  Dr. Makary does state that the 1984 study was not great science, however, they did find several good studies, reviewed the data, and came up with the figure of 251,000 deaths per year in the US from medical error.

It has been pointed out that Dr. Makary used 4 observational studies on incidents that occurred between 2000 and 2008, not exactly an accurate reflection of what the rate is now.  More importantly, the patients in those 4 studies were dominated by inpatients in the Medicare community, a more risk prone group than the general public. In fact, the authors say “the assumptions made in extrapolating study data to the broader U.S. population may limit the accuracy of our figure”. Aha, maybe it’s not as accurate as it appears in a splashy headline in our newspaper.

Check out the analysis and rebuttal of the science in the article below. 

ANALYSIS - Re: Medical Error - The Third Leading Cause of Death
by Kaveh G. Shojania

Cause of death is often multifactorial; a terminally ill patient may experience a medical error, but their underlying disease may be the majority of the cause of death. There is a huge and often unrecognized difference between an error and a bad outcome. All medical treatment has a risk of bad outcome even when no errors occur.

This is summed up very well in an article from Vinay Prasad on Stat News. "While the report in the BMJ — and the press release promoting it — sounded like researchers were on to something new, they were merely reminding us of old data."

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Don't Believe What You Read on New Report of Medical Error Deaths
by Vinay Prasad

No one would disagree with the efforts to eliminate medical errors to the highest degree possible, and like many important aspects of healthcare, this is one that is underfunded, understudied, and often swept under the carpet. Yet, to overstate the incidence does not help the effort to decrease medical error.

As advocates we will never stop working to prevent medical errors from occurring, but we need to be careful not to see them around every corner where they may not exist.

Best of Health,

Sima Kahn, MD
Founder, Healthcare Advocacy Partners

 

 

Happy spring everyone! Here in Seattle the weather is unseasonably gorgeous, and it makes everything better.

This is the last newsletter where I will focus specifically on upstreamists, and I want to do so around a theme: end of life planning. I would bet most of you don’t know that April 16th was National Healthcare Decisions Day (NHDD). From their website:

National Healthcare Decisions Day(NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.

The theme for 2016 is "It Always Seems Too Early, Until It’s Too Late."

"NHDD exists as a 50-state annual initiative to provide clear, concise, and consistent information on healthcare decision-making to both the public and providers/facilities through the widespread availability and dissemination of simple, free, and uniform tools (not just forms) to guide the process. NHDD entails 50 independent, but coordinated, state and local events (necessitated by the difference in state laws and dynamics) supported by a national media and public education campaign.

A key goal of NHDD is to demystify healthcare decision-making and make the topic of advance care planning inescapable. On NHDD, no one in the U.S. should be able to open a paper, watch TV, view the internet, see a physician or lawyer, or go to a healthcare facility without being confronted with the topic of advance care planning.

Among other things, NHDD helps people understand that advance healthcare decision-making includes much more than living wills; it is a process that should focus first on conversation and choosing an agent."

I am aware that it seems incredibly onerous to sit down and think about end of life planning, but there are a lot of resources out there to simplify it. In Washington State, you don’t have to have a lawyer to sign a Healthcare Power of Attorney document (aka healthcare proxy)—in fact you don’t even need a notary. You can go online, get documents, print them out, fill them in, and give them to your loved ones! Please do this for the sake of those you care about if not for yourself.

And now for the upstreamists. The people and organizations I am going to highlight are all working to make this subject accessible to everyone, not just lawyers. The goal is to change the thinking of our society that this is just not something to talk about, or that there will be time later, but rather to take action now so that your individual wishes can be known. 

The first organization I want to mention is Get Your Sh*t Together, founded by Chanel Reynolds. She founded the organization after the tragic and sudden loss of her husband in my neighborhood! Here is the story from the New York Times. This is a stunning example of “it always seems too early until its too late”. 

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A Shocking Death, a Financial Lesson and Help for Others
by Ron Lieber

The next organization I want to feature is Death over Dinner, started by Michael Hebb, who found out about the difficulty of helping those at the end of life when he met two doctors on a train ride. The doctors were dismayed about our healthcare system and relayed this startling fact:   

Nearly 75% of Americans want to die at home, yet only 25% of them do.

His organization makes it almost fun to have these conversations:

"Send an invite to loved ones, and then set the table to start talking about end-of-life care and how we want to live the final days of our lives.  We'll provide the tools and tips to get the conversation started.  You choose the guests and the menu, and let the conversation and the wine flow."

Michael Hebb on TEDMED ~  What Happens When Death is What's for Dinner

And finally, The Conversation Project began in 2010, when Ellen Goodman, a well known journalist, and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones.

Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now, and as often as necessary, so that their wishes are known when the time comes.

All of these sites have easily accessible documents for anyone to use. And I would be remiss if I didn’t mention The Five Wishes from Aging with Dignitya website that offers downloadable living wills that help document and describe your desires for end of life care. 

If you want any more information, let me know. Your family and your doctors will thank you.

Best of Health,

Sima Kahn, MD
Founder, Healthcare Advocacy Partners