Tuesday, October 25, 2016

What are the Barriers to Healthcare?



Photo credit: Katelyn Anderson


Recently, Matthew Holt published a blog post from Jess Jacobs, on the Worst Healthcare Experience of her life. His notion to redouble efforts toward changing our system for the better sparked my interest in the story of another young woman similarly afflicted.

Katelyn Anderson has EDS and was “officially” diagnosed with POTS five years ago. She holds a B....S. in Communications and was starting her graduate studies when one morning she woke with a racing heart, dizziness, and blackened vision. Physicians informed her there is no cure and she must resign herself to feeling exhausted and nauseous for the rest of her life.

Despite this, she has continued searching for methods to ameliorate her disease symptoms, which can include hypotension, poor circulation, headache, fatigue, tachycardia, nausea, shortness of breath, and unpredictable syncopal events. Doctors have compared her quality of life to that of a patient on dialysis and her level of fatigue to a person with congestive heart failure.

This remarkable woman is just 28 years old. Katelyn receives routine infusions of saline and nausea medications through a port in her chest so she can stand without near syncope. Her port is her life line. An in-home caregiver assists her with activities of daily living such as meal preparation, grocery shopping, and bathing.
Determined to make a difference, Katelyn has been using her talent as a photographer and blogger to inform and educate others about P.O.T.S. Most recently, Governor Jay Inslee and Mayor Patty Lent proclaimed October as Dysautonomia Awareness Month for Washington State and the City of Bremerton.

Katelyn moved to Kitsap County three years ago, yet has been unable to transfer her care locally due to lack of access. She travels back to Spokane for care from a variety of specialists. Katelyn has been forced not only to coordinate her care, but navigate a world in which she is unfamiliar. “I do not want people to be at a place in their life where they have to take healthcare into their own hands”, she declared.

Katelyn is right. Our healthcare system is a disjointed assortment of people, processes, and centers lacking vital interoperability. For Katelyn, POTS is likely secondary to having EDS. Definitive diagnosis requires eliminating other causes, such as Addison’s Disease, where the adrenal glands are unable to produce enough cortisol. Cortisol is important for immune function, blood sugar regulation, blood pressure stabilization, and metabolism. In high stress situations, we need increased cortisol release to function optimally.

If supply cannot meet demand, fatigue, low blood pressure and dizziness result even progressing to loss of consciousness. The gold standard for diagnosis of primary adrenal insufficiency is an ACTH stimulation test. A baseline cortisol level is drawn, ACTH is administered, and then cortisol levels are checked 30 and 60 minutes later.

Below is a timeline of the illogical road blocks Katelyn had to navigate to schedule her test.

5/10: An endocrinologist in Spokane recommends the ACTH stimulation test.
5/12: Katelyn calls the local infusion clinic for appointment. The referral has not been received.
Late July: The test is authorized by insurance and scheduled for September. Three medications must be discontinued for the test to be accurate meaning Katelyn is resigned to increased symptoms and even lower blood pressure, for the next six weeks.
9/12: Katelyn is denied her lab test when she arrives at the infusion clinic because the referral came from an endocrinologist outside the county. The lab had not informed Katelyn of this when she made the appointment.
9/12: The local infusion clinic called the only local endocrinologist to request an order and is denied. Physicians do not write orders for people who are not established patients.
9/12: By afternoon, the only option was finding a local PCP to write an order. This was difficult as ACTH stimulation tests are typically ordered, administered, and interpreted by specialists.
9/13-15: Katelyn calls her three clinic options in our county. None are accepting new Medicaid patients or are uncomfortable accepting her due to medical complexity. This is a common problem in our area.
9/16: Katelyn’s sister convinces her physician, who is currently not accepting new patients, to accept Katelyn as a patient.
9/22: Katelyn has an appointment with her "new" PCP who rewrites the order. Katelyn hand delivers it to the infusion clinic requesting it be given to the nurse manager.
9/29: Katelyn calls to make appointment at infusion clinic. The order was lost. A request for second order from her physician was made by fax. The infusion clinic would not schedule appointment since they did not have an order. Katelyn requests to see Nurse Manager and was unsuccessful.
9/30: Katelyn called infusion clinic, the second order has still not been received. The Nurse Manager is in a meeting.
10/5: Katelyn returns to the infusion clinic. They have not received a fax with the second order.
10/7: Katelyn calls the infusion clinic. The order has still not been received. She calls her physician. No response. She calls the infusion clinic again. By afternoon, no response and the day ends with no order and no plan.
10/10: Katelyn calls in the morning and in the afternoon, no progress is made.
10/11: Katelyn’s mother (ARNP from out of town) goes with her to the infusion clinic. No order has been received. The front staff offers little help to make progress. The Nurse Manager is available after Katelyn’s third request. The first order had to be re-written to be correct. The receptionists are managed by a different company and were not communicating with nurse manager. Nurse Manager facilitates the order from physician’s office and test is scheduled for 10/12 at 830am.

Accomplishing this task took more than 5 months. Medical care should be more accessible, equitable, and favorable for people like Katelyn. We must fix our broken system and eliminate arbitrary barriers for patients and physicians. Katelyn and countless others suffering from chronic disease deserve our time, effort, and above all, the best quality patient care.
Katelyn is an inspiration, she strives to see the beauty in life’s ordinary moments and capture them with her lens. View her captivating work at www.umberheartphotography.com.

Read her story at https://www.gofundme.com/acameraforkate as she strives to take her photography to the next level.  Thank you Katelyn for sharing your story with me and the world. 

Friday, October 21, 2016

Surprises When Talking to Patients in Public.




When meeting parents for the first time, a pediatrician often takes a thorough history.  This includes the delivery of the child, illnesses and surgeries since birth, and a cursory history about health of the mother and father.  Sometimes, important details are discovered the hard way
.
Patients often tell me they love that I recognize them in public, know their names, the names of their children, and some extra facts or two I have picked up about them over our years together.  I enjoy talking to patients and their families out in public because it gives me a glimpse into who they are outside of my office.  Not every child can place me right away and if they do, they hide in the folds of their mothers’ skirt whenever possible.
 
I was in Fred Meyer a few months ago and leaving the store after purchasing my items.  I saw a mother and her child, Larry, who is about 18 months old and absolutely at the height of his doctor terror.  I walked up behind the mother, placed my hand lightly on her shoulder so as not to startle her, and said “Well hello stranger, fancy seeing you here.”  Larry started crying right away, which to me was no surprise.  But, this mother’s reaction is what left me dumbfounded, dazed, and confused.
 
She jumped back, looked horrified and said, “Oh My Goodness, who the He!$  are you?”  Somehow, this was not how I envisioned the conversation in my head before stopping to be social.  Maybe I was on one of those shows where they videotape a prank so they can poke fun at you later, I thought. 
It took a moment or two to get my bearings. 

Just as I collected myself, another woman came around the corner from the restroom and exclaimed, “Oh, hi Dr. Al-Agba, how are you?”
 
I think my teeth could have fallen out onto the floor my jaw fell open so fast in shock.  “Didn’t I tell you I was an identical twin?” she asked.  Well, um, no, I do not remember you mentioning that exactly.  I do not think this fact had ever come up before.

While this situation is unlikely to happen again, the life lesson is to keep talking to patients in public, however be wary of tapping them on the shoulder from behind. Also I learned to think fast on my feet about the possibilities for why a parent might act like they do not know you at all.  Have a great week!

Tuesday, October 18, 2016

MACRA Payment Regulations Should Be Evidence-Based





Whether applied to policymaking for individuals, large populations, or administration of health services nationwide, it is imperative regulatory decisions be anchored to empirical evidence. The official MACRA rule has now been released.  It is 2,000 pages based on the opinion of many non-practicing physicians, Dartmouth economists, and government administrators with input from a few doctors on the front line. In my opinion, what began as a certain death sentence has commuted us to life in prison; MACRA will regulate physicians without representation. 

Let me acknowledge my opinion is limited by my own “small” practice bias. 380 thousand “small” practices (having 15 providers or less) will be exempted if they have less than 100 Medicare patients.  Your definition of small and mine are strikingly different.  Every single independent practice in my hometown of that “quasi-small” size, has sold to the local hospital already.  The “small” practices remaining in my community have 1 or 2 physicians, so I will refer to those as micro-practices for clarity.  My micro-practice serves more than 400 Medicaid patients, with a waitlist of more than 50.  MACRA rules do not seem to have an answer for when there are not enough micro-practices remaining with which to form a “virtual” group. 

I humbly suggest you expand the options in your “flexible” plan, to include a control group composed primarily of 1-2 physician practices.  Please, do not overlook the importance of tailoring interventions to the unique needs of small communities in order to ensure the existence of micro-practices in the long-term. The fates of millions of Medicare (and presumably Medicaid) beneficiaries is at stake.  It is absolutely essential that new payment plans are evaluated in comparison to a control group prior to arbitrarily being applied across the nation. 

A recent article in the NEJM evaluated early performance of ACO’s by using a control group, which is vitally important to the evaluation process.  Researchers concluded the first year was associated with early reductions in Medicare spending among 2012 entrants (1.4%, P=0.02) but not among 2013 entrants. Performance on quality measures was improved in some areas and unchanged in others.  And surprise, surprise, savings were consistently greater in independent primary care groups than in hospital-integrated groups among entrants in 2012 and 2013 (P=0.005 for interaction).  How on earth can CMS ignore yet another study showing independent primary care groups save money before someone important realizes MACRA (as it stands now) is on the bridge to nowhere?

Policymaking must use scientific research to guide decisions at each stage of the process in every branch of government. According to the Washington State Institute for Public Policy, there are three designations to grade the rigor of research methods and the amount of evidence available to guide sweeping program interventions: Evidence-based, research-based, and promising. 

Evidence-based programs have been rigorously studied; using randomized controlled trials, and found to be effective. Research-based programs have been tested using rigorous methods (studies using strong comparison groups, as I am proposing) but do not meet the evidence-based standard.  Promising programs have been tested using less arduous research designs and typically use well-constructed logic or theories to support ideas. 

Postulating and theorizing by Dartmouth economists has left us all on treacherous ground. These experts assembled data, “interpreted” it creatively, and then drew unsubstantiated conclusions upon which to base recommendations for creation of PCMH’s and ACO’s.  The fruits of their “promising, yet non evidence-based” labor have generated unimpressive outcomes, yet their poor quality decisions will not affect their income.  Culpability must be incorporated in the process this time.  Government agencies, their managers, and those economists now advising them must be held accountable for their outcomes this time before holding physicians responsible for ours.

Confidence in these experts is fading because Patient Centered Medical Homes (PCMH) and Accountable Care Organizations (ACO) are not holding up their end of the bargain, demonstrating miniscule savings at best, while making the life of a physician far more cumbersome.  A thorough critique by Kip Sullivan summarizes the research on three PCMH’s and three ACO’s showing little to any cost savings, further exposing the weak platform on which CMS has built their Quality Payment Program. 

In that same vein, CMS is estimating how much value-based payments will bring down medical costs while guiding patients toward better health.  The word “estimate” appears far too often in the Executive Summary of the MACRA Rule for me to be comfortable with this plan.  CMS intends to impose “promising, albeit not evidence-based” options on all physicians treating Medicare patients in less than 3 months.  Where is the conclusive data demonstrating cost containment and improved quality?  It does not appear to exist. What if your estimates are incorrect?  The consequences will be catastrophic for independent solo practices if your “estimates” are wrong.  Should I be forced to make this blind leap of faith without being certain?

Andy, good science will be good for your conscience. CMS policymaking must be based on rigorous research that is supported by empirical evidence, even if the results are equivocal.  Presuming, opining, and educated guessing are not adequate methods for imposing non evidence-based programs upon large populations.  Before CMS officially implements sweeping payment modifications on January 1st; please consider allowing a control group option, composed of small practices with 1-2 physicians.  I, for one, would like to be at the top of the list.  Do not throw the “fee-for-service” baby out with the bathwater before being absolutely certain your non-evidence-based payment models actually contain costs and are better for patient care quality than what is already in place. 




Wednesday, October 12, 2016

Don't Surrender Doctors... Fight. My Call to Action.





Independent physicians are at the beginning of a challenging movement as we fight to stay relevant and solvent during the transition of health care from independence to “regulation without representation”.     In 1773, British Parliament passed the Tea Act with the objective to help the struggling British East India Company survive. Opposition to the Act resulted in the return of delivered tea back to Britain.  Boston left the ships carrying tea in port and on December 16, 1773, colonists in disguise swarmed aboard three tea-laden ships and dumped their cargo into the harbor.  The seeds were planted for the Revolutionary War. 

Physicians in private practice are facing a war of our own, and make no mistake; we are battling for our freedom and our livelihoods.  Insurance companies and government control of health care has become “regulation without representation.”  Lofty guidelines are being imposed, while administrators, insurance executives, and policy consultants are wedged firmly between doctors and patients.  Ironically, when it comes to taking responsibility for a life, the physician is standing there all alone.  How dare we ask a fee-for-the-service we have rendered?  That would be ‘fiscally wasteful’ according to health policy pundits who know nothing of service-oriented occupations.  This is my call to action. 

Where is all the money going?  CEO’s of healthcare insurance companies are making millions. High level CMS employees undoubtedly have higher incomes than primary care physicians.  Where is the outcry from the media and public?  The media, with reason, jumped all over Mylan when they started charging $600 for an Epi-pen two-pack, but at least it is a tangible product.  These high paid middleman are sucking the life out of patients and physicians without any demonstrable need or benefit. Some insurance CEO’s make over $100 million per year, which amounts to approximately $280,000 a day. How many Epi-Pens can they buy with $280,000? 

The majority of physicians are beholden to third party payers, who decide what our work is worth, like modern day indentured servitude.  Instead of having conversations with patients, our time is spent buried in absurd paperwork, endless forms, and questionnaires to accommodate federal requirements instituted by elected officials while industry insiders are controlling the puppet strings.  Physician lobbying groups, such as the American College of Physicians, keep telling us to “roll over and play dead” because they are profiting regardless. 

While they may not be drinking tea, the business of healthcare is certainly having a party at the expense of physicians, patients, and taxpayers.  It is time the party comes to an end.  Physicians are being held accountable for outcomes yet have no influence on how we care for our patients in our own offices.  Medicare beneficiaries are forbidden from entering private contracts with their long-term physicians (DPC); the only way out is physicians must say no to Medicare and some private insurances.  

Last year, a large insurance company and I did not quite see eye to eye.  Family X already had two children for whom I provided medical care.  Their newborn was assigned to an adult nephrologist two counties away by mistake (I hope), so it seemed reasonable to provide necessary primary care for their third child.  This infant had a respiratory arrest at her two week appointment.  I resuscitated the baby and paramedics transported the infant to the children’s hospital for PICU care.  Imagine my surprise 2 months later when a “take-back” was initiated on the payment for this patient encounter after initially being compensated.  Dr. W in the appeal resolutions department told me to “lose his phone number”; he thought a few hundred dollars was too costly for just saving a human life.  Believe it or not, Dr. W was a pediatrician in private practice before “if you can’t beat them, join them” took hold. 

Ultimately, I had no choice but to bill the family for provided services (at a considerable discount) as cash pay and they obliged.  A threatening letter arrived a few days later from Mr. CEO that balance billing was illegal and there would be serious consequences if I insisted on any monetary payment for my work.  This by definition is worse than indentured servitude.  Balance billing is charging a patient the difference between what health insurance reimburses and the provider charged.   The fact I was not paid by his company nullifies his entire accusation. 

I fired off a response humbly suggesting he focus more on placating his stockholders, while leaving the work of saving lives to me.  Our practice cut ties with this company, notified patients it was no longer accepted in our practice, and most families changed their insurance plans.  You would think my David and Goliath-esque tale ends here; however our local federally subsidized Community Health Center is the only place accepting this exchange plan (for reasons that should be obvious at this point.)  There is no pediatrician available.  The tables suddenly turned.

Local insurance representatives inquired why patients were being turned away.  Never having signed a contract, I made it abundantly clear they had no control over anything.  If I did not receive back pay, there would be no further deliberations. Suddenly, ‘take-backs’ were being halted and back payments were being reversed from over a year before.  When a high level executive called to ask if I would reconsider accepting their patients, it dawned on me that physicians may hold more cards than we realize. 

Health policy experts and insurance executives are NOT physicians and they require our expertise; they have not foreseen the complications that will arise when supply does not meet demand.  Physicians are fed up with data collection requirements, cumbersome electronic record systems, and outcome measures that mean next to nothing.  The time has come to throw proverbial tea chests into the Harbor and refuse to comply with the regulations being enforced up on us.  “No Regulation without Representation” should be our battle cry.  My practice is terminating another insurance contract this week.  If we make smart business decisions, refuse to follow the rules while managing to survive long enough, we can win this war.  Patients deserve better.  Physicians deserve better. 

Acquiescent physicians have already been driven out of independence.  Those of us who remain are smart, resilient, capable, and now we must be resolute in our refusal to comply. We know how to provide extraordinary care, which is why our doors are still open.   My office is overwhelmed by patients clamoring for a living, breathing physician who listens, makes eye contact, and is not attached to a computer.  We must never give up, we must continue to argue, irritate, and aggravate healthcare bureaucrats at every turn, like those brave individuals who boldly tossed tea into the Boston Harbor many years ago.  Defiance will inspire progress. Do not surrender at any cost.  

Tuesday, October 11, 2016

America's Favorite Pastime





Baseball is one of the greatest sports of all time.  In this country, people have attended games, played games of catch outside with their children, and coached little league teams for generations in small towns everywhere.  This is a story about a few of those children with some interesting medical lessons sprinkled in for good measure.

My most recent experience with damage from a baseball involves a beautiful little child who was playing catch with her father.  As he recounted the story to me, he mentioned how well she was throwing her fastball.  It was both accurate and consistent; he became more impressed the longer he threw back and forth with her.   Over time, he slowly advanced his speed to 50% of his strength and still, she caught ball after ball.  That is, until the one time she didn’t catch it.  It hit her smack in the middle of her forehead.  According to dad, the sound was significantly haunting.  Her knees buckled from the pain and shock, she collapsed, however remained conscious throughout the experience.  This is one tough little person. 

Now let’s talk about the baseball bat.  My most striking case (literally and figuratively) involved a school-aged boy many years ago.  He was standing too close to the batter at a little league game.  His forehead was on the receiving end of another child’s full swing using a metal bat.  His father said the ghastly sound made him cringe as he ran out to help his son who was knocked unconscious by the blow to his head.  The boy remembers standing near the batter waiting for his turn and waking up under my care in the ER. 

When I reached his bedside, he was awake, alert, and talking with me but had the largest mound (pun intended) on his forehead that I have ever seen to this very day.  In fact, pressing on his forehead left an indentation from my finger in the large hematoma (medical term for very large swelling with blood below the skin.)  It still makes me a little woozy.  We did not exactly call every concussion back in those days and as long as they could “eat, drink, walk and talk”, they were cleared to be discharged home. 

However, I believed underneath that swollen forehead his skull had to be fractured.  I presented the case to my attending and requested an X-ray.  “It is not broken,” my attending said.  “Are you kidding me?  It has to be fractured in two”, I blurted.  He said, “since you are about to be in practice on your own, I think it would be a good lesson for you to order that film.  Go for it.”  I remained convinced this young man needed an X-ray, so I went with it and of course, learned something important. 

The bone was perfectly pristine and intact.  The boy was discharged home to follow up for the concussion.  “How did you know it would not be broken?” I inquired to my supervising physician.  “In 30 years, I still have not seen a broken frontal bone.  It is probably one of the strongest flat bones in the body.”  To this day, I have yet to see a fractured forehead bone.  I have lots of experience with small children falling out of grocery carts onto their foreheads; those accidentally whacked with sticks, bats, and balls, and have seen plenty of children recuperating after automobile accidents. 

Finally, the most common injury has been “little league” elbow which is due to overuse while pitching. It boils down to being conservative with pitch counts:  no more than 50-75 per game depending on age.  Make sure your child has time off after pitching using the rule of 20’s:  Twenty pitches or less requires one day of rest, 20-40 requires two days, and 40-60 needs three days.   There is one final rule to preventing injuries in young pitchers and that is not allowing “breaking” pitches such as curveball, screwballs, sliders, knuckleballs, and other variations.  Breaking pitches spin, as a result of applying finger pressure to the ball and snapping your wrist when releasing it. The mechanics needed to execute these pitches place undue stress on key joints in the elbow and shoulder.  The USA Baseball Medical & Safety Advisory Committee recommends only players over 14 years old should be allowed to throw breaking pitches.

So much time is spent these days talking about football injuries, I figured a quick collection of my own experiences over the years might lend a little perspective.  My best advice is to keep playing outside with your own children even if there are some stumbles and scrapes along the way.   And take heart; at least you are not the father who hit his daughter in the face with his own fastball at half speed.   

Tuesday, October 4, 2016

Building Better Metrics: Patient Satisfaction Can Be Done Right!




Recently I wrote about empowerment and the importance of letting patients make their own health care decisions.  Our job is to make sure patients are given information and then allowed to choose the best option for them.  Maybe we should even embolden patients; give them confidence and encourage them to take more control. Physicians tend to feel more comfortable advising according to the “standard of care” and we struggle handing over the reins when we believe we “know” the safest path to take. 

Every time I talk about building better metrics, I emphasize the significance of evaluating something physicians can change or control.  The intent behind measuring patient satisfaction was likely to increase patient autonomy, however, as with many things; the devil was in the details.  It turns out chasing higher patient satisfaction scores can result in higher costs and increased mortality.  Overall, the most satisfied patients were more likely to be admitted to the hospital and total health-care costs were 9% higher. Most strikingly, for every 100 people who died over a four year period in the least satisfied group, 126 people died in the most satisfied group.  At least they died happy and satisfied right? That notion can be difficult for some physicians to accept but might be more important than we realize.  

Looking at surveys Press and Ganey developed over their illustrious careers leaves me wanting something more than “Did your doctor listen to you?” and “How often were you treated with courtesy and respect by your physician?” Neither attribute ensures better health care outcomes as noted above.  If the goal is to empower patients, more objective questions are necessary to give more insight into this metric.  

1.     Did your physician give you a name for your condition?  (“I don’t know” counts.)

2.     Did your physician discuss more than one treatment option? 

3.     Did your physician ask you to choose a treatment for your condition?

4.     Did you ask a question of your physician? How many?  _________

(CMS bonuses $ per number of questions >1.) 

5.    What did you learn during your appointment with your physician? (Use lines below and there is more space on the back if necessary.)

A few winters ago, I had my opinion handed to me on a silver platter.  A new family with a 4 month old baby came in for a well child check-up and immunizations.  The mother mentioned concerns about a cough her son had for 7 days.  On exam, he was afebrile and well hydrated; yet, had raspy breathing that troubled me.  On exam, that observation translated into bi-basilar crackles with slightly decreased breath sounds on the right side.  Without a fever, a chest x-ray seemed like the best option to differentiate between bronchiolitis (not worrisome) and pneumonia (more distressing.) 

The mother picked her child up off the table and looked horrified at my suggestion to order a film. Fear and hesitation over an X-ray was a novel response, however I had seen this reaction about immunizations, blood draws, or other significant interventions before.  I inquired as to her concerns and reassured her radiation exposure was minimal compared to the risk of missing pneumonia in an infant.  We went back and forth with a more questions and answers.  I always try to be kind, courteous, open, direct, and honest and this situation was no different.  This mother did not want an antibiotic prescription and I was uncomfortable treating the baby with antibiotics and no definitive diagnosis.  She ultimately refused any further care, picked up her son, walked out the door, and went home.

This child was not necessarily on death’s doorstep, but I could not guarantee this child would get better on his own.  I communicated as much to the mother; she disagreed and it was her right to do so.   I explained my concerns, conveyed my recommendations clearly, and discussed symptoms she should watch for if the baby worsened.  I documented the encounter in the chart and there was nothing more for me to do. 

After the mother left, the student shadowing me that day began crying out of shock, disbelief, concern, and frustration at this mother for not doing the “right” thing.  I remember feeling this way years before:  there was always a right answer, it was our job to find it, and make things happen, but health care does not always work that way.  As a physician matures, they begin to understand more of the gray.   

The practice of medicine is an indefinite, sometimes clumsy art and as a result can be unpredictable as a science.  While it is difficult for physicians to comprehend, what we believe to be best for our patients may not be what they feel is best for their children or themselves.  It is a bitter pill to swallow.  We spend years in training witnessing good outcomes with intervention and death from “poor” decisions, but we must remain cognizant of the fact each patient may have a different goal.

Patient satisfaction seems to come less from the ultimate outcome, and more from feeling acknowledged and having played a role in health care decisions.  That is the key to true empowerment and autonomy.  Consider how this mother might have answered the survey questions. She would have been “satisfied” despite our disagreeing, which makes for a better metric upon which to evaluate quality. 

Patients are weary of being told what is best for them, what they should do, or what standard of care dictates.  Unfortunately, I have lost children as a result of parents not following some recommendations a few times in my career. In reality, I may have lost them regardless. 

Here is where the rubber meets the road:  The autonomy to choose the right path for a given patient may have dangerous and permanent consequences, but the authority lies with them for better or for worse.  A patient may be very satisfied one moment and dead the next.  It is time physicians embrace the fact that our aim and conduct should be to inform and educate, not to convince or influence and let the chips fall where they may.  And survey metrics should objectively reflect the importance of that vital patient concept.