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Happy holidays to all of you!

This is a good time of year to look back at the year and do a survey of how well we are accomplishing our goals. I’ve been thinking about how to spread the word about healthcare advocacy, and this story struck me as a case in point.

Recently a colleague and friend said to me that she had thought about calling me (as a healthcare advocate) when her son had been very ill. He was much better now, but the family had gone through a very difficult and scary time.   I wondered what had made her hesitate while they were going through the health crisis. We met for lunch recently, and she told me the story. Here it is with many identifiers changed, and I’ve included my comments in italics where a healthcare advocate would have helped.

This 22-year-old male’s past medical history is significant only for migraines, he has been active in sports and has been routinely healthy.

He joined a fraternity in college and then moved into a house with friends where he began to have respiratory illnesses, and his health began to deteriorate. The house, which his mother describes as a dump (I thought that the house my son lived in his fourth year of university should be burned down when they moved out), was subsequently found to have black mold. He developed gastric ulcers that eventually bled and he was treated according to the appropriate protocol.

In December of 2014, he called his mother during a particularly bad respiratory infection to “come get me”.  She did, and he was found to have pneumonia.  Due to his illness he had to take an extra semester to graduate, but he recovered at home with appropriate medical care and finished school in March of 2015.

In October of 2015,  his family noted that he was becoming more and more irritable, and he began to have more and more fatigue.  (I should add here: this would not necessarily trigger a call to an advocate, but it would have been a good time for him to see his primary care doctor). Within 2 months he was sleeping more and more and eating less and less (again, see your doctor! This is not normal!).  

In January of 2016 he noticed blood in his urine. Was this a urinary tract infection? He saw a urologist, who also ordered a CAT scan, which was normal. The possibility that he had passed a kidney stone was considered, although the symptoms were not particularly characteristic for that, and my friend’s son did not think that it was likely.

A week later his nausea, irritability, and fatigue had markedly increased. He saw a nephrologist at his medical clinic, who wondered if it was a virus. A creatinine was checked (this measures kidney function) and it was found to be 3.5 (abnormally high, especially for a young person). He was scheduled to have a scope of his bladder, but that was cancelled due to respiratory symptoms (asthma?). The next day, when he saw his urologist his creatinine was 5.5 (even worse! And rapidly worsening!)  It was clear that something was going on that needed to be addressed urgently, and he was admitted to the hospital—and put on the oncology floor!

Here is the first point where a healthcare advocate would have been helpful. The family felt lost in space. And he was on an oncology floor! An advocate could have helped with the communication between the medical team and the family, and explained that this did not mean he had cancer. At a time like this, someone who can keep track of all the pieces of information and relay them calmly to a very distressed patient and family can be priceless.

He proceeded quickly to a diagnostic workup that led to the diagnosis of a rare autoimmune syndrome that attacks the kidneys.  As a kidney biopsy confirmed this, his creatinine climbed close to 7, and his blood pressure increased.  The doctors immediately began treatment with plasmapharesis (a method of removing blood from the body, separating the components, and reinfusing the cells but not the plasma--a way of getting rid of unwanted antibodies). They also treated him with prednisone, as well as an oral chemotherapeutic agent. He was told that 50% of his kidney tissue had been affected by the immune complexes. He believed, wrongly, that he was destined for a kidney transplant, and soon.

Next place for an advocate to intervene: not all medical providers communicate well with patients, and making sure the patient and family have a realistic idea of what could lie ahead is important. The emotional distress that this misinformation caused was significant, and entirely unnecessary.

He continued to have daily plasmapharesis for 4 weeks; his hospital stay was complicated by the development of a blood clot in his arm that required IV anticoagulation (overtreatment led to him bleeding from everywhere but dissolved the clot very rapidly), and a bout of hospital acquired pneumonia after about 2 weeks was treated with IV and oral antibiotics.

One of his doctors took his pathology slides to a conference because it was so unusual. He was discharged after a 4-week hospital stay on 20 different medications. His creatinine is now around 1.5.

What went well?

  • Relatively rapid diagnosis after hospitalization, and appropriate treatment, with improvement in his condition.

What went not so well?

  • One nephrologist told him he would need a kidney transplant in a year.

  • Lack of mental health consultation

  • A different nephrologist every week for all 4 weeks he was hospitalized

  • No support groups

A healthcare advocate would have been able to work with the system and the patient to be sure he had some mental health consultation during the hospital stay. In addition, the family needed some support, and this also could have been facilitated. In addition, if the nephrologist is going to change weekly, the healthcare advocate can be the continuity to be sure all sides are hearing each other.

Now: He is recovering at home, rides his motorcycle, and doing much better. He is off of chemo and has weaned down his prednisone. He has gotten much feistier (he doesn’t want his mom going to doctor appointments with him). But he went through a significant period of depression, and was even suicidal. He is on an antidepressant, which helps. He still feels under the influence of “chemo brain”, but this is slowly improving.  And he is experiencing what sounds to me like PTSD.

A healthcare advocate would stay involved after discharge from the hospital, and perhaps could have hastened treatment for the depression, as well as help find resources to treat PTSD.

As my friend said, a healthcare advocate is like a SWAT team that can swoop in and make sure everything that needs attention gets attention.

My friend’s son had a fairly rapid diagnosis, good medical care, and is doing much better. Even so, the journey could have been so much less painful, scary, and a much smoother ride with an advocate.

A healthy new year to all!


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