| 2 September 2016
Dear Interested Readers
This Week’s Offerings
Several years ago I asked my son who has put a new song on the Internet every Monday for the past three hundred and two weeks how he writes a song. Before I give you his answer click here to hear and see one of my favorite songs that was written for September 5, 2011. I like it because it also contains an interesting self portrait as well as a remarkable commentary in verse and song on how to approach life after a setback in a “restless world”.
I expected that he would answer my question about his creative process by telling me that he wrote the words and then a melody that fit the words and then put in the harmony to finish it all off. His response was that he always began with a single note. After my surprise began to fade I asked more and the picture that emerged for me was far from what I had expected to hear. That first note fits into a chord that becomes part of a riff that expands itself into a melody after which harmony is layered on and then, only after the musical idea is expressed, do the lyrics get layered on. That is pretty much what I remember of his formula, although if you ask him now he may report that I got it all wrong. That has happened before.
Someone recently asked me how I wrote every week and I had to stop and think to give an accurate answer. I was surprised to learn from my answer that along the way I had evolved a process that was not too dissimilar to my son’s creative process. I write this lead section about what’s in the letter first, before there is a letter! Well, that’s not exactly right. The process usually begins with an idea that has been rolling around in my head for a while. I may even have done some generalized reading looking for clues and facts that I might weave together before I begin to write, but when I do write, this section is first.
The process resembles putting down forms before pouring concrete. This first section is the form and most of the time it stays the way it was written, although on occasion I discover when I read the final product that I did not really deliver what I had hoped to write and must go back and bring this section into harmony with what finally emerged. Describing it to you now, I realize that this first section is my outline, although I never mastered being so planful as to write from preconceived outline. Outlines are structure and being a closet non conformist I resist conventional structure, but create my own version out of necessity.
What follows this confession as the letter for this week will be a combination of reflections and a recent story that together argue for how desperately we are searching for a structure that insures the patient centered care that we all want for ourselves and our families. We prioritize organizational finance, operational efficiency and effectiveness, and our response to external regulatory pressures ahead of the experience that patients and families have. We are more likely to protect a bottom line than the wait time for an appointment and respond more efficiently to venders than to our consumers. Frequently, issues of personal concern to professionals come first when we think about healthcare reform or if you prefer, transformation.
Much like my letter, we have been making it up as we go along and we have made some progress on the journey to more patient and family centered care in the rare institutions where it has been identified as a leading priority, but it is hard for patient centeredness to be the primary concern when our thoughts are dominated by “no margin, no mission”. When it comes to patient centered care we have moved down the road from what Atul Gawande has described as ignorance, when we could not even describe what might be good, to a more advanced state of ineptitude where we know what would be good but just can’t do it consistently. The Triple Aim still lies far ahead for most of us and is completely over the horizon for some reluctant travelers. There is no area of the search for quality that is more difficult to achieve than patient centeredness. The bulk of this letter is about that problem and the harm that flows from our continuing ineptitude.
I am always delighted to discover articles in the NEJM that have been written by someone whom I know or have heard speak. I feel that familiarity gives me a leg up on judging merit and reliability. Last week I was delighted to discover that the lead article in the “Perspectives” section of the NEJM was entitled “The Hard Work of Health Care Transformation” by Richard Bohmer, a Professor at Harvard Business School and physician whom I have heard speak at HBS and at other venues around Boston. I recommend that you click on the link and read the article in preparation for my story and reflections. In less than three pages he says much of what I have tried to say in a million or more words over several years of writing. At a very high level he describes the progress made at many healthcare organizations that have risen to the challenge of trying to deliver:
Care better than we’ve seen, health better than we’ve ever known, cost we can afford…for every person, every time.
Just to close a recurrent loop for me, the picture that Dr. Bohmer paints may be a shadowy image or outline of what is emerging as leading healthcare providers seek to understand how to organize personnel, facilities and finances into a conceptual framework and operating system that moves us toward the Triple Aim or as Dr. Ebert postulated more than fifty years ago:
The existing deficiencies in health care cannot be corrected simply by supplying more personnel, more facilities and more money. These problems can only be solved by organizing the personnel, facilities and financing into a conceptual framework and operating system that will provide optimally for the health needs of the population.
The Red Sox have been idle since coming back from disaster twice in order to beat the lowly Rays on Wednesday afternoon. I’ll have more to say about that toward the end of the letter as well as offering you a few thoughts about how to spend this last weekend of the summer. September will be all business and suspense with the run up to the Presidential debates that will begin before Tom Brady returns from his exile that begins this weekend.
May I suggest that you take a look at strategyhealthcare.com. Silly me, it has taken me almost two years to recognize that you must join the site and sign in with a password before you can leave a comment. There were technical reasons for that barrier. It seems that there are robots that work in the “comment space” in the blogosphere. I want comments so that barrier has come down. Give it a try. Taking down the wall will create a little more work for me, but I hope that the investment will make the site more valuable to you and other interested readers. As an alternative, never forget that you can direct any comment that you would like to make directly to me at drgenelindsey@gmail.com. I love getting mail.
“It Should Not Be This Hard!”
Almost two weeks ago I got a call that worried me from the moment I saw the identification of the caller on my screen. It was not the time of day that an old friend calls just to say, “What’s up? How are you doing? I’ve been thinking about you.” Emails or texts are the usually preferred forms of communication for this person whom I have known for many years.
My apprehension was immediately confirmed when the voice on the other end of the line said, “It’s terrible! Matt is in the hospital and he has had a stroke!” My caller and I had been communicating frequently lately because Matt had not been well. Several months ago she had emailed me for some advice because Matt had been discovered to have cancer after more than a year’s worth of complaints about an intermittent difficulty.
I had heaved a sigh of relief when I learned that Matt was to receive his care from the cancer services of an internationally famous hospital that was somewhat inconveniently located for him but not too far from his home. I was sure that he was getting the best. There was now one less concern for Matt and my friend who have been domestic partners for more than twenty-five years. I thought that my role as a friend and trusted adviser with a little bit of “inside” knowledge would become easier. I did not know the people from whom he was getting care, but I did know that there were few hospitals or oncology services in the world that published more textbooks, journal articles or had more NIH grants than this world famous institution. If you made a list of the ten most respected academic medical centers in the world, Matt was going to be getting his care at one that would be on everybody’s list.
How wrong I was. I knew that his care would be difficult. He was not surgically curable by the time his diagnosis was made. He began a combined course of chemotherapy and radiation that would be time consuming, uncomfortable and logistically difficult for anyone, but even more so for a semi retired couple in their seventies with only friends and no local family for support. Traveling ten or fifteen miles for care seems reasonable, especially if it is to get critical care that is deemed better than any that can be had on the planet. It is an easy trip even at peak commuting hours when you realize that there are some patients crossing oceans from other continents to get the same care. Rational thinking about how fortunate one is runs into the reality of how hard it is when your daily task is to fight the commute to get to the place where you go almost daily, like a job, to get the treatment that you hope might extend your life.
After several months of treatment Matt and my friend were encouraged because they were told that the scans “looked better.” The tumor was shrinking even though Matt felt weak most of the time and he had lost over forty pounds in the course of his treatment. There were only a few treatments left and his “counts” seemed to be holding. Looking back over my experience both in practice and in life, it occurs to me that things often seem to be getting better until they aren’t. The biggest events and changes arrive as sudden and unexpected surprises. So it was with Matt. My friend was awakened in the night by the sudden realization that something was wrong. Matt seemed confused. He was trying to get out of bed but seemed weak on one side. His speech made no sense. My friend is not a medical professional but is an educated professional woman who like most lay people has been made aware of the warning signs of stroke.
Perhaps if Matt had not been a complicated oncology patient, she would have had no ready place to call and she would have just called 911. The oncologist had urged them to call with any concern day or night, and so that was the call she made. She was relieved when after two calls and a thirty minute effort she was on the phone with the oncologist that she knew who listened to her story. She was surprised when the oncologist said, “He can not be having a stroke.” Perhaps he is just having some “intermittent delirium.” Apparently, this is a frequent problem in this oncologist’s experience. If he was still “confused” in the morning she could call and they would make special arrangements for him to be worked into the schedule for a visit. When the phone call ended, my friend was not relieved but confused and now faced the reality that she must either accept her advice or go elsewhere. Matt’s “confusion” seemed to come and go. The next few early morning hours were frightening and confusing but her sense was that he was getting worse. She then called 911.
At the local hospital where he was taken by ambulance, the staff in the emergency room quickly determined that he was indeed in the midst of a major neurological event. Protocols were activated and it was determined that he did need to go “in town” to the academic medical center to see if he could have the clot extracted from his middle cerebral artery. Things moved along expeditiously but when the procedure was attempted more than ten hours after the onset of his symptoms, the outcome was suboptimal. The stroke team expressed regrets that they had not been called sooner.
One would hope that the downward course had reached its nadir. Matt was now in the ICU at a capable hospital where ineptitude had been supplanted by world-class technology and decades of clinical experience. Communications expertise and effective operations seem not to be worthy of attention in this institution famous in part for being famous. Concerns about aspiration led to mixed messages from nurses, house staff and attendings. Difficulties with feeding tubes and ensuing debates about the merits and advisability of a PEG versus surgical placement of a gastrostomy tube were confounded by parallel debates over anticoagulation for recurrent atrial fibrillation, low platelet counts, operative risks and rehabilitation status. Every question answered by one authority was refuted by another from a different service or by a house officer or nurse who offered contrary advice or began to make a new plan. My friend was actually the person who suggested the direct surgical placement of the gastrostomy tube since the “team” was concerned that his condition contraindicated the PEG and without some access for nutrition he would not be a candidate for rehab.
As the week moved on medications were forgotten. Antibiotics were stopped and started as questionable x rays led to debates of infection versus atelectasis. All the while my friend felt that Matt was getting worse. At one point she emailed to say:
The young surgical resident in here yesterday decided to withhold nourishment from Matt beginning yesterday in order to try to go ahead with the stomach tube (PEG). When I got here around 1:00, Matt was in awful shape and has lost a lot of what he was able to do and say since yesterday. He had been 12 hours without nourishment even though they had clearly decided he couldn’t have the surgery.
I am very frustrated. Team meeting was held at 2:30; surgeon didn’t show up. I made it clear that nothing was to happen that I didn’t know about. Those present agreed that Matt shouldn’t have surgery until he finished the radiation - next Monday. Yesterday and before, they were talking about rehab. Today, they are thinking that he couldn’t do three hours of therapy - that would make him not qualified for rehab. Finally got some saline going in him - took five hours to accomplish that. Hoping that will make things better.
Worried about rehab. For Medicare to cover rehab up to 100 days he needs to go into an acute care [rehab] facility. If he goes to a lesser care facility, then he gets only 20 days in a rehab that can’t really help him...
Got the heparin issue straightened out. He is now getting a sufficient amount such that it would be withdrawn before surgery for the PEG.
Gene, sometimes I feel as though I am in the land of crazy. People need to communicate, get the whole picture of the patient, and youngsters need to get more experience before being in a decision making position. I told them in the meeting that I knew they wanted to get him out of here but there was no point in losing common sense. They all agreed. I have a friend in the neurologist; … and he is being most helpful.
I was not the only person offering sympathy and advice. Another friend of my friend whom I do not know was rather blunt but I feel some would applaud her summary about the quality of care that many people receive:
I hate doctors and trust no one. I suggest you do the same because you never know what their motivation is. It sounds so cynical I know, but I’ve had almost 6 years experience with every kind of hospital and rehab and the whole system is f--ed.
Try and hang in there-day to day...it's no way to live but what else can you do?!
Give our love to Matt & to you of course & if you ever need to vent or rant, I’m your man!
Not to belabor the story I will finish quickly by saying that the last oncology treatments were eventually completed. Matt did eventually have the surgical placement of his gastrostomy tube and was deemed to have enough rehab potential to merit transfer to the more intensive rehab facility where he will get up to one hundred days of care. In the last email I received my friend wrote:
Gene,
The surgery went well although Matt is still in pain from it, but it has just been about 32 hours since the surgery. He was moved to rehab at 5 today. It is a much saner place and absolutely beautiful. So far people are very cooperative, personable, and actually have some time to talk. The last radiation treatment was around 4 this afternoon.
So tired; didn’t get to go to NYC for some work yesterday and today, but can reschedule fortunately. Just not the time to leave.
Thank you again for all of your help.
I tell you this story for many reasons. It is a cautionary tale that we all should appreciate because it can happen to anyone. We are all “dependent on the kindness of others” or subject to the same pain and humiliations from which there is no guaranteed protection no matter how successful we have been, the fame of the institutions where we jockey to get our care, the level of our education, the people that we know or the size of our resources.
Consider Matt and my friend. They are in their early seventies looking forward to travel in retirement although she does some continuing consulting. (She did not make the trip to NYC.) They both are educated with graduate degrees and have had positions in life with significant responsibilities. They sought to protect their health with great primary care. They thought they were going to a world-class institution for cancer care. They are “connected” in the social sense of the phrase. They followed the rules they were given; yet they had an unfortunate outcome made even more difficult to endure because of systems issues.
Expense or the cost of care was never an issue, but there were enormous amounts of avoidable waste and suffering in their experience. The cost we will all bear, because Medicare will cover most of the cost of the acute hospital care and rehab, will be measured in the hundreds of thousands of dollars over what it might have been save for the initial response when care was requested and there was a statistically higher likelihood of reversing the course of the middle cerebral occlusion. Indeed some flow was restored even after the delay. Perhaps things might have been worse had my friend not given Matt an aspirin even before she called the doctor when she first suspected that he might be having a stroke.
I have written before about the work of Dr. Anthony DiGioia who practices orthopedic surgery at the University of Pittsburgh and heads up their innovative program of Patient and Family Centered Care. Dr. DiGioia and his colleagues have published many scholarly articles demonstrating the economic benefits to patients and institutions associated with care that is co designed by clinicians and patients and families. The system and methodology are nicely described in a recently published PDF that you should download.
In the AMA Journal of Ethics Dr. DiGioia and his colleagues have written:
We suggest that clinicians and healthcare organizations can apply Pine and Gilmore’s prescription of creating an exceptional experience of care by partnering with patients and families to redesign care and can do so in a way that increases value by simultaneously improving clinical outcomes and decreasing costs. Experience includes everything that leaves an impression on the patient and family, from their viewpoint—for example, clinical outcomes and care quality, interactions with and among care professionals, transitions in care, the physical environment, safety, and costs. Accordingly, medical education must include (1) coursework that introduces these concepts and (2) a specific implementation mechanism with which to achieve and sustain (over time) focus on patients’ experiences and on patient and family-centered care in clinical settings.
That paragraph suggests that it is not only within the capability of an AMC with world class credentials and resources to practice a more patient centered form of care, but it also makes reference to the fact that TDABC (time driven activity based cost) analysis shows that focusing on co creating a better experience of care for patients and families improves profitability and lowers total medical expense. In other words, if your mantra is “no margin, no mission” then introducing patient and family centered methodology and practice in your institution should be a high priority!
The pain, suffering and mental anguish that Matt and my friend endured is avoidable and represents waste. Eliminating dysfunctional hospital and practice communications should be a universal objective. Designing pathways of care with patients and families should be a universal priority.
As I have been thinking about these issues over the last several weeks while this story developed, I was surprised and delighted to discover that the lead article in the “Perspectives” section of the NEJM was entitled “The Hard Work of Health Care Transformation” by Richard Bohmer, a Professor at Harvard Business School and physician whom I have heard speak at HBS and at other venues around Boston.
Dr. Bohmer's first paragraph is a brilliant description of the world as many organizations are experiencing it now.
Governments and regulators influence the performance of health care organizations and practitioners primarily through positive and negative financial incentives, regulatory constraints on their licenses to practice, and support of performance-improvement activities through education, research, and measurement programs. The financial approaches aim to motivate change in the way organizations and practitioners configure their systems and deliver care, under the assumption that once they’re motivated to seek surplus or avoid sanction, they’ll be willing and able to make local operational changes to reduce cost and improve safety, patient experience, and outcomes. Unfortunately, experience shows that although a changed market may be a helpful precondition to local performance improvement, it hardly guarantees effective operational change.
Following that paragraph he describes how the most forward thinking organizations are approaching the hard work of transformation. I do the article disservice when I attempt to distill the remaining text down to the following points. He observes that a few organizations have progressed with their transformation and then for the benefit of those who are struggling asks the rhetorical question, “How did they do it ?”
• “Examination of organizations that have achieved and sustained substantial performance improvements reveals that lasting transformation requires the relentless hard work of local operational redesign…” Not by “top-management-led structural and governance change”. ---Think Lean!
• “Successful ‘transformers’ like Virginia Mason Medical Center...make small changes to their structures and processes over long periods.” --Think Lean!
• “Everything from communicating with patients to cleaning gastroscopes to ordering tests and choosing therapies has been subject to redesign...”---Think Lean!
• “These organizations’ experiences clarify that multidisciplinary teams must undertake this redesign work.”---Think Lean!
• “..few redesigns get it 100% right the first time. In practice health care transformation is a long series of local experiments.”---Think Lean!
• “Transformation requires sustained change in individual behavior, team interactions, and operational design.”---Think Lean!
The article then asks how successful organizations manage and fund this process of change. The answer is that they create improvement resources that engage clinicians. (Even better if they engage patients and families.) They have a standardized approach to change (like Lean, Six Sigma or perhaps Patient and Family Centered Methodology/Practice). Those methodologies change the language and culture of the organization. Progressive organizations are committed to measurement and data utilization to facilitate transparency and change. Most successful organizations have senior management groups that support and facilitate the work done closer to the point of care. ---Think Lean!
Work by Dr. Digioia and his colleagues, work in organizations that have embraced improvement methodologies like Lean, and thoughtful analysts like Dr. Bohmer give me encouragement that care that is as disappointing and dysfunctional as Matt received as a patient and my friend endured as a family member, may become rare in time. In the interim I hope that they both will continue to have a better experience in the rehab process, but I am worried that there will be more avoidable and regrettable experiences ahead. Rehab from a stroke and treatment for an aggressive tumor is a tough combination, and it is an ethical obligation for us all to work hard to improve the experience of the patients and families who come to us with the expectation of help. It makes so much sense that it boggles the mind to realize that we continue to allow our collective ineptitude and misconceptions to delay that day when we all can count on receiving
Care better than we’ve seen, health better than we’ve ever known, cost we can afford…for every person, every time.
Before the Leaves Change
The Labor Day weekend was once the official end of summer. With most children back in school for one or two weeks the holiday just doesn’t have the punch it once had. This last week the days have been cooler. There is a fall chill in the air in the morning and evening. Last Sunday I realized that I had been neglecting my sailing primarily because it is hard to find people who have the time and courage to accompany me as I am challenged by the tricky breezes on the lake. My wife used her long lense to capture my effort and since it was taken from such a distance that it is impossible to see the perplexed look on my face, it is presented as the end of summer picture in today’s letter.
In politics and sports we are moving into a month of uncertainty. Tom Brady’s banishment begins this weekend. He has been mum about where he will be for the next month. The only certainty is that he can’t be seen in Foxboro. Following a trip to Mexico and an interesting speech in Arizona, Tom’s friend and the Republican candidate for president continues to remind me of a descriptive line from Kris Kristofferson, “He’s a walking contradiction, partly truth and partly fiction, taking every wrong direction...” On the other side of the contest there is an ever growing body of “excuse me” columns in the NYT that only hopeless liberals like me read. The sum total of all that I read is that no one knows anything for sure. Some say they do, but anything can happen and will between now and November 8. I put no confidence in the predictions of pundits or what seems like the expected outcome in the minds of the rational this year because “rational” has had nothing to do with this extended episode of national torture. Something tells me we “haven’t seen nothing yet.”
My unsteady nerves had a night off last night because the Sox were in transit to the West Coast where they are scheduled to play two of the teams at the bottom of the standings. They are a remarkable team that can beat themselves in new and surprising ways when it looks like they are about to “breakout” and cruise to the playoffs. I’ll be on pins and needles for the next two months. Long walks are my survival strategy. I hope that you will be so busy improving care delivery where you work that you have no time for the foolishness that bogs me down. Do not miss any chances for a late summer/early fall walk. Winter can start any time.
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| Be well, take care of yourself, stay in touch, and don’t let anything keep you from making the choice to do the good that you can do every day,
Gene
Dr. Gene Lindsey
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