The power of Twitter

Last week, NPR ran a story on their Shots Blog based on a paper from JAMA Surgery, Quality Improvement Targets for Regional Variation in Surgical End-Stage Renal Disease Care. The story was one sided, and without balance. The truth is that irresponsible nephrologists are not the primary reason patients don't start dialysis with a fistula. Swapnil saw the post and went on a bit of a Twitter rant discussing the limitations of both the post and the article on which it was based. As is typical for our Twitter renal community, a number of other nephrologists chipped in with poignent observations and tweets. It quickly became a great academic discussion on the difficulties with fistulas.

I collected the relevant tweets and published a Storify of the entire event.

A few hours after I published the Storify I received an e-mail from Nadia Whitehead, the author of the NPR post. We did a 15 minute phone interview where I was able to provide some balance to the original article and I urged her to call Swapnil for some more feedback. She did that and posted a follow-up article a few days later. 

I think this is a pretty good example of why doctors need to participate in social media in open networks like Twitter rather than behind the locked doors of private physician networks like Doximity and Sermo. We need to be engaged in the same media and networks that the public is immersed in so we can be heard and reman relevant. I think it also shows the value of curating these discussions with a tool like Storify. I played a minimal role in the discussion but she reached out to me, primarily, I imagine, because I was the author of the Storify. The Storify is what triggered the action on her part.

Being Mortal: Chapter Three

Graham Abra wrote this summary. 

Chapter 3: Dependence

The chapter begins with the stories of Bella Silversone and Alice Hobson who struggle and are unhappy with their experiences in assisted living and skilled nursing facilities. 

Gawande uses these narratives to set the stage for how society has handled the care of people as they age.  In the United States, in the early 1900s, if individuals did not have family or financial independence the only option once they were unable to care for themselves was a poorhouse or almshouse.  These institutions housed not just the elderly but also the mentally ill, young drunks, and out-of-luck immigrants.  Housing was provided in exchange for labor and conditions were generally poor. 

Although poorhouses have now disappeared as places of care for the elderly in the United States they have been replaced by institutions that often require us to give up most of the control of our lives.  How this happened is the story of the medicalization of natural aging. 

In 1946, the Hill-Burton Act provided large amounts of federal funding for communities to build hospitals.  Medicine was becoming more powerful and for the first time was actually curing previously fatal diseases.  Social security might have provided financial support but it didn’t “cure” infirmity and so the hospital became an attractive option for the elderly infirm.

Unfortunately medicine had no answer for the ravages of time and chronic illness so the hospitals began to fill with the elderly who were unable to care for themselves as the poorhouses emptied and closed through the 1950s.  As their beds overflowed hospitals lobbied for help and in 1954 funds were made available for custodial units that provided a place for patients in need of extended “recovery.”  Thus was born the “nursing” home.  

In 1965 the Medicare bill passed and payment for medical services for elderly Americans in facilities that met basic health and safety standards was available. Unfortunately many parts of the country lacked access to such places and so, fearing a political backlash, the concept of “substantial compliance” was created – allowing facilities that were “close” to the standards and trying to improve to qualify for payment. This opened the door to profit through underfunded service. With a belief in the power of medicine to cure and payment on hand, 13,000 nursing homes were built by 1970, many with substantial quality problems.

The quality problems have improved over time and have been replaced by a focus on control and safety in order to meet payment requirements.  The institutions where 50% of us will spend a year a more of lives were not designed to make life worth living at the end – they were designed to meet other goals.  

After losing her love for life and signing a DNR, the chapter ends with Alice’s death.

Being Mortal: Chapter Two

Edgar Lerma, [EL] Chicago nephrologist and father of #NephPearls worked with Joel on this summary of the second exciting chapter of Being Mortal.

Chapter Two: THINGS FALL APART

Chapter Two looks at how life and death have changed with modernity. Gawande describes how the lifespan has increased from around 60 in the 1930’s to somewhere in the 80’s today. But he goes on to emphasize that the life span does not quite capture how much the shape of mortality has changed. He points out that modern medicine has dramatically reduced childhood mortality. Please look at the story of John Leal and his role in reducing infant mortality by 74% by inventing the concept of chlorinating city water.

Gawande describes the change in the ‘trajectories of life.’ In the past, life appeared to be a continuum, curtailed by disease or injury. This could happen at anytime from infancy, to childhood, to adulthood to older age. The risk was relatively flat, one day you were alive and the next you were kicked by a horse, or infected with influenza, or had a heart attack, and the next day you were dead. Modern medicine has changed that trajectory in a couple of different patterns. The most successful medical practices delay or prevent acute deaths. Treatment of serious infections or trauma care are good examples. Even some cancer therapy is successful at delaying the onset of decline without changing the basic pattern of health until a final acute loss:

People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis. They undergo treatment. Symptoms come under control. They resume regular life. They don’t feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses. Eventually, it makes itself known, turning up in the lungs, or in the brain, or in the spine, as it did with Joseph Lazaroff. From there, the decline is often relatively rapid, much as in the past. Death occurs later, but the trajectory remains the same.

But for others, including those with chronic and progressive diseases, the trajectory has ups and downs, and following every deterioration, any recovery is incomplete and the overall trend is accumulating burden of illness. A classic example is chronic kidney disease. It is a chronic and progressive disease marked with episodes of AKI that further reinforce and accelerate the decline. People become weaker and weaker with incomplete recovery.

The effect of medicine has also introduced (or made more prevalent) a new type of death, a third pattern, a pattern not influenced by acute or chronic disease but just a slow withering decline, death by old age. Gawande spends a few great paragraphs describing the normal deterioration of aging and medicines frustration in dealing with it. Some facts:

  • By age 60, people in industrialized countries have lost on average a third of their teeth.
  • “As we age, it’s as if the calcium seeps out of our skeletons and into our tissues.”
  • More than half of people develop hypertension by age 65
  • Peak cardiac output occurs at age 30 and deteriorates after that
  • By age 85, 40% of people have textbook dementia

This resonates with my [EL] CKD practice. I am repeatedly explaining that from age 40 onwards kidney function deteriorates as pat of normal aging. Furthermore, uncontrolled diabetes, hypertension, along with acute illness, accelerates this decline. My job, all of our jobs, as kidney specialists, is to slow this inevitable decline.

Gawande emphasizes that this deterioration is normal and unavoidable. We hold up the exceptional 97-year old marathoner as something to strive for rather than a story of remarkable genetic luck.

He then describes various theories about aging and different models to explain why we age. He looks at models of aging from complex systems to genetics. He describes the cellular mechanics of aging in skin, hair, and the eyes. It is a fascinating trip through the biology of aging.

As part of this tour we are introduced to Dr. Felix Silverstone a senior geriatrician at Parker Jewish Institute in New York. He is introduced as an expert geriatrician with over a 100 publications. He is is however old and now experiencing what he spent a career studying.

These societal changes bring about two revolutions: a “biological transformation” of the course of one’s life and also a “cultural transformation” of how one thinks about that course.

One of the societal changes of modernity has been the ‘rectangularization’ of the pyramid of life.

n the past, the elderly tended to be outnumbered by the younger generation; however, as people tend to live longer, there are almost equal numbers represented by the young and the elderly. This has wide ranging implications. For one, the number of people supporting retirees is shrinking compared to the number of retirees. The time when a large working population is supporting a small number of retirees is gone.

The second issue that he brings up is that medicine has done a poor job preparing for the changing demographics. The number of geriatricians with the skill and experience in handling such patients is not keeping up with the need. Structural changes in medicine perversely are causing geriatric centers to close in the face of increasing need.

Although the elderly population is growing rapidly, the number of certified geriatricians the medical profession has put in practice has actually fallen in the United States by 25 percent between 1996 and 2010.

As a subspecialist, I [EL] tend to view my patients in a reno-centric point of view. I feel that I am very good at diagnosing and treating kidney related problems. However, I do realize that as I fix my patients’ kidney related issues, e.g., blood pressure control, diabetes control, etc., there are some on the problem list that won’t ever get resolved, e.g., the lower extremity edema of my CHF patient with LVEF ~ 10% or the salt intake of my patient who depends on Meals on wheels, etc.

Oftentimes, my untrained mind, wonders why is it that whenever I see elderly patients, it’s as if the primary care provider hasn’t adjusted their BP meds or checked their proteinuria, etc. Gawande addresses this by explaining that geriatricians have a unique point of view. An example is a story about Dr. Juergen Bludau, a geriatrician, who paid more attention to an elderly patient’s feet, and if she is able to bend over to clean them. It all boils down to the idea that this intensely practical approach translates into decreased falls. Dr Bludau said that “the job of any doctor is to support quality of life: as much freedom from the ravages of disease as possible, and retention of enough function for active engagement in the world.” Gawande describes how effective the work of geritricians is by explaining a landmark randomized controlled trial of geriatric versus usual care.

Within eighteen months, 10 percent of the patients in both groups had died. But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services.

These were stunning results. If scientists came up with a device—call it an automatic defrailer—that wouldn’t extend your life but would slash the likelihood you’d end up in a nursing home or miserable with depression, we’d be clamoring for it. We wouldn’t care if doctors had to open up your chest and plug the thing into your heart. We’d have pink-ribbon campaigns to get one for every person over seventy-five. Congress would be holding hearings demanding to know why forty-year-olds couldn’t get them installed. Medical students would be jockeying to become defrailulation specialists, and Wall Street would be bidding up company stock prices.

Instead, it was just geriatrics. The geriatric teams weren’t doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications. They saw that arthritis was controlled. They made sure toenails were trimmed and meals were square. They looked for worrisome signs of isolation and had a social worker check that the patient’s home was safe.

How do we reward this kind of work? Chad Boult, the geriatrician who was the lead investigator of the University of Minnesota study, can tell you. A few months after he published the results, demonstrating how much better people’s lives were with specialized geriatric care, the university closed the division of geriatrics.

The chapter closes by rejoining Felix Siverstone as he ages and enters a nursing home with his wife. He thrives in this environment and even starts a journal club for retired physicians (NephJC geriatric edition!)

The chapter is a great set up for the rest of the book, it informs the readers, sets the stage, raises the stakes. The tension is set.

The thing that gets us to the thing...

Matt and I wrote a wrap-up post for NephMadness that went up on MedScape today. Please go read it. In it we explain what we are trying to do with the various social media events and projects we promote for nephrology:

We have established an informal curriculum of digital mentorship. The goal is to provide a vibrant community of always-available, academically minded nephrologists who are interested in sharing their skills, knowledge, and wisdom. Most of these conversations are spontaneous. Examples include recent discussions on the relationship between sodium linked glucose transporter-2 (SGLT2) inhibitors (a new drug for the treatment of diabetes) and diabetic ketoacidosis and another about whether one should stop antiplatelet agents before kidney biopsy. The tweets were a mixture of references, pithy bits of insight, images from primary sources, and opinions.

NephJC and NephMadness are stepping stones to this always available online community. They are important for setting the tone and attracting people who share our vision and academic values. But in the end, NephJC isn't the thing it is just the means of getting to the ultimate goal of a viable, self-perpetuating, professional network, of academically-minded, nephrologists particiapating in social media. I was reminded of this while watching the pilot of Halt and Catch Fire. The plot turns on an old article written by the protagonist, Gordon Clark, where he states that computers aren't the thing, but rather the thing that gets us to the thing.

Being Mortal: Chapter one

Suzanne Norby is a nephrologist and fellowship program director at the Mayo Clinic and recently joined the NephJC advisory board. She wrote the first of our eight (fingers crossed) chapter summaries of Atul Gawande's Being Mortal

Chapter one The Independent Self

In the first chapter of his book, Being Mortal – Medicine and What Matters in the End, Atul Gawande begins by introducing the reader to the dissimilar aging experiences of his grandmother-in-law, Alice Hobson, in Alexandria, VA and his own grandfather, Sitawan Gawande, in India.  He then explores several historical and cultural influences affecting how societies view elders and aging.

When Gawande first met his future grandmother-in-law, Alice was a vibrant 73-year-old widow living an active and independent life: residing in her own home, driving her own car, and even regularly going to the gym with a friend.  In contrast, his own grandfather was hard of hearing, walked with a cane, and lived in the home of one of his sons in India. He not only had assistance with activities of daily living but also occupied a place of honor. One fateful day, at age 109, he was traveling with a family member on a bus to take care of some of his own business at a courthouse.  He fell and hit his head, likely suffering a subdural hemorrhage. Several days later, he died at home, surrounded by family, as he would have wanted.

Next, Gawande explains that relationship between older and younger generations has evolved in multiple ways.  First, the exclusive position once held by elders has eroded. Throughout most of history, life expectancy was considerably shorter than it is now.  Those who lived to an advanced age were respected, even revered, for their wisdom, perspective, and knowledge of tradition.  Now, living to advanced age is commonplace. Contemporary means of communication have largely eliminated the need for oral transmission of precious information to the next generation.  Moreover, older people are less likely to embrace the most modern technology, and members of younger generations have become the experts in knowledge transmission, reducing the relative importance of elders.

In addition, older people no longer remain as heads of households, providing a basis for family stability until their death. Children follow their own paths, move out of the family home, secure their own property, and become economically independent. They don’t depend on inheriting parents’ money and property to sustain their own families.  At the same time, this phenomenon also has brought financial freedom to aging parents, along with the concept of enjoying retirement.  Gawande notes that “intimacy at a distance” occurs when elderly people have financial means of their own and can choose not to live with their children after they are no longer working.  The percentage of elderly people living alone is increasing not only in the U.S. but also in countries in which it had been previously regarded as “shameful” when an elderly parent is left to live alone.  In fact, he points out that it has become “acceptable and feasible” for elderly people, such as his grandmother-in-law Alice, to live autonomously.  Generational power differences have shifted, allowing both parents and children to have more freedom and control.  Rather than valuing elders or even the younger generations, society’s ideal has become the “independent self.”

Alice’s unsteadiness is not something that can be fixed

The problem with the independent self, Gawande explains, is that inexorably, the realities of life eventually render independence impossible.  He poses the question, “If independence is what we live for, what do we do when it can no longer be sustained?”  He then returns to the story of Alice, now 84 years old, exhibiting memory impairment while on a family vacation and sustaining multiple falls in her home. Her son takes her to the doctor, who diagnoses osteoporosis and changes her medications.  Ultimately, though, Alice’s unsteadiness is not something that can be fixed:  she would not be able to remain independent as she continued to decline.  Her doctor, however, “had no answers or direction or guidance” and couldn’t describe what to expect going forward.  With that statement, Gawande foreshadows the message of the next several chapters of his book.

The book club is coming!

On July 13th and 14th we will be doing the first NephJC book club on Atul Gawande's excellent Being Mortal.

Don't lose hope the book has some supremely uplifting chapters like the story of Bill Thomas bringing life to a nursing home with pets, lots of pets:

To get ready for the book club I found this article about the twitter book club #1Book140. Pretty interesting. My favorite part of the article is

But so what? For me, 1book140 was more enjoyable for its intimacy. Most of all, I liked how nice everyone was. So often the Internet is a place of derision and insult. But on 1book140, participants respected one another without having to be told to be nice.

I would be so happy if the conclusion of people take away from NephJC is that the people are nice and the conversation civil.

Thoughts on tonight's #NephJC Social Media Chat

Last night I was reading John Weiner's personal reflection on social media in medicine. He posed the question of whether the definition of professionalism is fixed and we need to adapt our social media use to these standards or do we adopt our measure and expectations of professionalism to new tools and personal behaviors. His words:

For example, a joint initiative of the Australian Medical Association Council of Doctors-in-Training, the New Zealand Medical Association Doctors-in-Training Council, the New Zealand Medical Students’ Association and the Australian Medical Students’ Association has produced a document called ‘Social media and the medical profession’ (Mansfield et al., 2011). The advice includes, inter alia, this statement:

Our perceptions and regulations regarding professional behaviour must evolve to encompass these new forms of media.

I would argue that perceptions and regulations of professionalism, once properly espoused and documented, should be applied universally, in any day and age, and for any circumstance or technology. This is declared, for example, in the Royal Australian and New Zealand College of Psychiatrists Position Statement ‘Psychiatry, online presence and social media’ (RANZCP, 2012) where, although there are specific allusions to social media behaviour in the document, there is an over-riding clause that clearly states:

they must ensure their social media use and Internet presence upholds the ethical and practice standards required for Fellowship of the College. (RANZCP, 2012)

Others argue that social media is somehow different. After all, it has immediacy and reach and permanency. I cannot accept that a smart, well-educated student who has achieved entry to medical school does not know these properties of social media.

This question seems to be at the center of any discussion of professionalism in social media, we need to at least understand what we mean by professionalism. While at first blush it seems that standards are only standards because they do not change. But on deeper thought, it is clear society has evolved. Imagine 1985 Marty McFly driving his Delorean to 2015 Brooklyn. What would be his reaction to people:

  • publicly share vacation photos for the world to see
  • millions of public diaries open to the world
  • restaurants full of people snapping and sharing pictures of their food
  • people "checking in" to share their current location when they get to every social engagement

He would be shocked at this narcissistic hellscape. Our ideas of privacy have undergone radical changes in just a few decades. It seems to me that the codes of professionalism must evolve with the standards and behaviors of the time or they will lose relevancy and become just an exercise in conservatism.

Please join us for this chat tonight at 9PM Eastern or tomorrow at 8PM GMT (3PM Eastern/Noon Pacific), it should be great.

#NephJC has RSS subscribers?

A few months ago, we mentioned how to subscribe our feed with RSS

At that time, we had one subscriber (Swapnil) - and to our great surprise, it seems to be that RSS is back. Just see below:

Unless there are spam RSS subscriptions somehow....

In some other news, we would like to thank Marjorie Lazoff for mentioning us in the LITFL blog  - go check out their literature review here

Swapnil Hiremath, M.D.

The AUA v ACP guidelines. Fight!

Tonight's and Wednesday's #NephJC is going to focus on the ACP guidelines. But it is important to recognize that a different group looked at the same data and came up with very different conclusions of what CPG should look like.

The systemic review that is the primary source...

The systemic review that is the primary source...

...was the same in both clinical practice guidelines.

...was the same in both clinical practice guidelines.

The American Urological Association Guideline (PDF) consists of 27 guidelines covering:

  • Evaluation
  • Diet therapy
  • Pharmacologic therapy
  • Follow-up

The AUA did consider 18 additional studies that were not part of the AHRQ analysis. The recommendations are graded and the authors interpreted the grades thusly:

  1. Clinical Principle. This is a statement about a component of care that is widely agreed upon by urologists or other clinicians for which there may or may not be evidence in the medical literature. My sense this is, that these recommendations are so woven into the fabric of stone care that people would not be able to get a study of these practices past an IRB.
  2. Expert Opinion. This is a statement, achieved by consensus of the Panel, based on clinical training, experience, knowledge and judgment for which there is no or insufficient evidence.
  3. A or B level evidence translated into Standards
  4. C level evidence becomes Recommendations
  5. Options are non-directive standards that may or may not be based on evidence. There is only one and it was evidence grade B

Background

  • The prevalence of stones is increasing. It has gone from 5.2% in 1988-94 to 8.8% in 2007-2010.
     
  • It is affecting more women so that it is much male dominated. The male:female ratio has slipped from 1.7:1 in 1997 to 1.3:1 in 2002.
  • They looked at the diet studies that used stone formation as the outcome. Those studies found that increased water intake reduced stones. It found beneficial effect by avoiding cola. 
     
  • They looked at multicomponent diets and described the ability of a low sodium, normal calcium, low animal protein to reduce stones more than a low calcium diet.
     
  • Two other studies restricted animal protein as part of a multicomponent diet and was unable to find any advantage.
     
  • The authors point out that changes to urinary stone risk factors has not been validated as an intermediate endpoint.

The authors are transparent about one of the primary gaps in the use of diagnostic information about the nature of a stone in the therapy for that stone.


One caveat, all the RCTs diet studies were done in stone forming men.


The Guidelines

The 27 guidelines themselves are pretty straight forward and read like a description of what takes place in a well run stone clinic. The authors are again transparent, labeling many of the guidelines as Clinical Principle and Expert Opinion. In terms of the final score it looks like this:

Well over half the guidelines are opinion or clinical principle (which is just an opinion in a new hat).

Well over half the guidelines are opinion or clinical principle (which is just an opinion in a new hat).

Here is the breakdown by section:

Not surprisingly, only pharmacologic therapy has received significant RCT attention.

Not surprisingly, only pharmacologic therapy has received significant RCT attention.

The AUA and ACP guidelines are based on the same evidence but ultimately look very different. The ACP guidelines look at this evidence desert and provide guidelines so sparse they end up functionally useless. The AUA, on the other hand, hitches the evidence to common sense, scientific innuendo, and long-held medical habit to provide fairly comprehensive guidelines that primary care doctors and part-time stone-physicians can use to actually take care of patients. The AUA guidelines paired with the AHRQ evidence analysis are documents I would have every fellow add to their iPad library. The ACP guidelines? Not so much.

In the end the ACP guidelines read like political statement protesting the sorry state of stone evidence, while the AUA guidelines provide a practical manual guiding stone care while still being transparent about the poor state of evidence.

Joel Topf, MD

NephJC: GMT chat slightly delayed this week

In case you were all wondering where the EU/African leg of the PD/CHF #NephJC chat disappeared, it will be held - albeit with a week's delay - on Wednesday June 3rd. It is all for a good reason. It has been quite busy for the Europeans this week - as you must have seen with all the furious tweeting from Charlie Tomson, Daniel McGuinness, David Arroyo, and many more including our very own Paul Phelan (who also wrote some excellent AJKD blog posts).

But, better late than never - and we hope many of you join us this week for the PD/CHF #nephjc chat.