Clinical Guidelines, Patient Complexity and Trust

“It is much more important to know what sort of patient has a disease than what sort of disease a patient has.” Sir William Osler. 

The use of guidelines in medical practice is necessary for good patient care.  Guidelines have always been with us in practice, although it is only in recent years that the “best practice” norms that all physicians and nurses are taught have been formalized into guidelines.  What is a guideline?  According to the Institute of Medicine (IOM) and as used by the federal government National Guideline Clearinghouse, “Clinical practice guidelines are systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.”

 

A recent article in the Journal of the American Medical Association points out that, to be effective, guidelines must be trusted and widely accepted.  The authors discuss that guidelines should be developed through a rigorous, standardized process so that they are consistent and reflect the best, most up to date thinking in order to build and to deserve trust.   However even the most rigorous approaches to guideline development will not guarantee trust if they are then used in ways that foster suspicion.    There is almost a “bait and switch” quality to developing a guideline to assist practitioners and patients and then using them to determine if a practitioner is high or low quality, to set insurance coverage and to determine reimbursement.The use of the guidelines in this way can be seen as threatening and as regulating rather than assisting.  

The National Heart, Lung and Blood Institute is careful topoint out in their definitions of guidelines that “The recommendations are not fixed protocols that must be followed.  Responsible clinician’s judgment on the management of patients remains paramount.  Clinicians and patients need to develop individual treatment plans that are tailored to the specific needs and circumstances of the patient.”

But that is not how they are applied.  The various ratings tools often used by the health plans and other third parties, can label a practitioner as a “bad doctor “if guidelines are not adhered to.  The insurance carriers and the government payers can withhold payment if you deviate from the guidelines.  Treatments that deviate due to a caring physician trying to “tailor to the specific needs and circumstances of the patient” can be labeled as “experimental” or not in keeping with the “medical policy” that governs the reimbursement and coverage.  While there are appeals mechanisms in place, they are often difficult, time consuming, and may be perceived by the treating doctor and patient as being biased towards the health plan or other entity.

The use of guidelines as de facto standards for payment and quality rating purposes has positive aspects.  For physicians as a profession, the adherence to guidelines within certain parameters may be a proxy for quality especially in view of the lack of other available metrics.    However the erosion of trust that occurs when they are used in that fashion is real and needs to be acknowledged and addressed. 

One of the reasons that guidelines are not standards is that they do not take into account the complexities of real patients.  The practice of medicine is, more often than not, driven as much by the complexity of the individual patients as it is by the complexity of the disease being treated as was noted so eloquently in the quote from William Osler above.  In an article in the Annals of Internal Medicine published in December 2011, the authors defined five domains of patient complexity as reflected in the attached chart from their study.  

  

Only one of the five domains, the “medical decision making”, is in the realm of clinical guidelines.  Even that domain is not fully addressed by disease specific guidelines as diseases usually do not occur in medical isolation but in the context of other chronic illnesses, other acute illnesses and other medical risk factors that may not be reflected in one specific medical guideline.  The patient personal characteristics, the mental health issues, both primary and secondary due to the stress of the medical illness, as well as the very real life socioeconomic circumstances may make the following of a guideline difficult to impossible. 

In this reality of patient complexity, clinical guidelines are extremely valuable when used to help the patient and the doctor as long as they engender trust.  When, instead they are seen as just interfering in good patient care by pushing a doctor into the untenable position of adjusting to the individual needs of the patient or being labeled as practicing poor quality care, we do all a disservice.

 

Guidelines are a very positive force to doctors, nurses, other health professionals and especially to patients if they are trusted however their use as a way to determine reimbursement and benefits coverage can seriously erode that trust.  We need to find ways to measure physician performance and drive payment parameters without compromising the trust needed for guidelines to be used.    

A Systems Engineer Gets Sick

An excellent “A Piece of My Mind” article in the Journal of the American Medical Association entitled, “A Systems Engineer Meets the System”by David H. Gustafson, PhD is a reminder that while systems are important, people caring for people remains the key to good clinical outcomes.

Dr. Gustafson starts out his article by identifying himself as a systems engineer, whose life work has been, and remains, organizational change and quality improvement in health care.  He then describes his own experience as a patient with severe heart disease and his ongoing medical journey that includes a new heart courtesy of a heart transplant.  He identifies four elements of great care:

Commitment to Greatness: The health care professionals caring for him all did not just consider health care to be a job but instead brought energy and commitment to his care that went beyond work hours and normal work protocols.  They were driven by a mission for excellence that could overcome whatever obstacles arose. 

Ownership: The excellent medical teams that helped him all had a sense that whatever happened to him was their responsibility.  As he phrased it, “…, I knew the staff “owned” me.  I wouldn't be passed along somewhere else.”

 

Advocacy: Dr. Gustafson’s wife was with him constantly and she was always supported by a friend, only a phone call away, who is a physician.  His wife acted as his bodyguard, watching everything that was done, and his voice in issues as small as the cleanliness of his room and as large as the need for invasive tests.  The friend supported his wife and acted when needed as a “boundary spanner”.  He was there to remove barriers (as we say at Accolade) when they arose as they often do in health care and to coach Dr. Gustafson's wife. 

Caring: Dr. Gustafson puts it this way, “Caring means commitment, but it also includes having fun; being friendly; and getting to know other people as human beings and not just as clinicians, patients, housekeepers or administrators.”    All of us want to be seen and heard as individual human beings with our own thoughts, relationships, needs and values and must be recognized as such for true caring to occur. 

At Accolade we have built an organization and a profession whose main role is to act as the “boundary spanner” and the “advocate” and ultimately, the overall Health Assistant for every issue that has to do with accessing the best health care at times of need.  We put principles of “ownership” and “caring” into all of our client relationships.  By doing so, we improve care and this decreases risk to the individual patient and waste in the entire health care system.  

A Hospital is a Dangerous Place

The latest New England Journal of Medicine includes the description by Dr. Harlan Krumholz of a new disease: Post Hospital Syndrome.  In the article entitled, “Post-HospitalSyndrome – An Acquired, Transient Condition of Generalized Risk”, he notes clearly and concisely what most people in medicine have always believed but never voiced in this manner.  Just being in the hospital makes you sick. 

As he states it, “Patients who were recently hospitalized are not only recovering from their acute illness; they also experience a period of generalized risk for a range of adverse health events.”  To put it simply, the experience of being in the hospital puts you at risk for a virtual cornucopia of illnesses that often are totally unrelated to the reason you were admitted to the hospital in the first place.  He backs up this contention by reviewing the reasons that people are readmitted after Heart Failure, Pneumonia, COPD and Gastrointestinal problems.  It turns out that most of the time readmission is for causes other than those diagnoses that drove the need for hospitalization in the first place.  This chart from Dr. Krunholz’s article makes that vividly clear. 

When people are in the hospital, we, that is the health professionals who care for them, deprive them of sleep, disrupt their sleep and wake rhythms, often do not feed them in preparation for tests and procedures, create pain by poking them and prodding them, confuse them, give them medications which all have side effects, and keep them in bed which results in deconditioning their muscles.  Then we send them home saying “You are better”.  Numerous studies have shown that people who lose weight in the hospital are more likely to be readmitted.  At least part of that weight loss is related to the poor nutrition and the muscle depletion that comes from lying in bed. 

When we send them home, it is often with little coordination between the care givers in the hospital and those in the community, such as the primary care physician.  “Improvements” in health care delivery, such as the use of hospitalists, has fragmented care and impaired our ability to help peole through the transition from hospital to home.  The old saying that people are sent home “sicker and quicker” is often true and contributes to this “Post-Hospital Syndrome”. 

They are also sent home confused as the sleep disorders beget sleeping pills and the pain begets pain pills.  We then send people home either on the pills, some of which may be unnecessary when they are in their own beds without IVs sticking out of their arms, or on too few pills so they are racked with pain and fear despite having been “fixed” in the hospital.  Then we wonder why they have to be readmitted for the confusion and for mental status changes.

 

So what is my advice for patients and their families?

• Be a demanding patient in the hospital.  Do not meekly accept being awoken in the middle of the night, or being in a room in which there is noise and distraction.  Ask why being disturbed while asleep is necessary and what alternative plan can the doctors and nurses devise. 
• Do not meekly accept being starved.  If you are made NPO (nothing by mouth) prior to some test, specifically ask why and how long before you can eat.  After a test demand being brought food even if it is not the scheduled time for the floor. 
• Question everything.  What are these medications for, what is the blood test for, and why is that CT scan being done must be questions to ask constantly.
• If you are strong enough, get up and walk.  If you are not strong enough, aks a nurse to get you into a chair and to help you walk.
• If you are well enough, get dressed.  (Staff in the hospital will see you with more respect and as more “human” rather than the patient in room 3.)
• Have a bodyguard.  Have someone you know and trust, like a family member, stay with you as much as possible to help you and to advocate for you.  They should be coached beforehand so that they are assertive on your behalf. 
• Have an assistant or an advocate available by telephone.  This should be someone who understands the health care system and can help you be assertive and help you know the right questions to ask at the right times.  Your on-site “bodyguard” (see the previous bullet point) may not be enough of an expert to fill that role.
• When you go home, insist that the nurses and doctors call and report to the doctor who will be caring for you as an outpatient.  It is even better if you can be part of the call and listen in.  The transfer of the knowledge of your hospital stay is critical to your health. 
• Insist on taking copies of your records home with you.  Even in this day of electronic medical records, the staff can print out records for you to take with you. 

Finally the best way to avoid Post-Hospital Syndrome is to avoid going into the hospital in the first place.  While a hospital stay is sometimes unavoidable and can be lifesaving, it is also risky and can leave you sick in ways that are totally different than your reason for going in.   

Who's in Charge Here?

This week’s issue of the New England Journal of Medicine has two “Perspective” pieces having to do with decision making and the difficulties that modern medical advances and modern health policy advances have inadvertently created.  I read these and can only think of the immortal words of Oliver Hardy talking to Stan Laurel saying, “Well, here’s another fine mess you’ve gotten me into”.  In our zeal for ever more expertise that comes with medical specialization and for ever more organization for our unorganized system, have we created a “fine mess”?   Are we losing the ability to help our patients make choices that are consistent with their own values and in keeping with the best medical knowledge?

The article by Stavert and Lott entitled, “The BystanderEffect in Medical Care” accurately compares the problem of having multiple specialists to the bystander effect which is the human tendency to be less likely to offer help in emergency situations when other people are present.  Poor communication and coordination between medical professionals can lead to each physician only being focused on the specific disease they are involved in treating and not the entire patient.  The old concept of the primary care doctor being the “captain of the ship” has given way to primary care doctors who no longer even enter the hospital and leave that care to the hospitalists, intensivists, and other specialists.  For complex outpatients, the primary care role can quickly devolve into a triage role.  The specialists who are focused on their small piece of the puzzle often don’t truly coordinate with the primary care physician.  The primary care physician is so busy just seeing patients that the coordination and the compilation of the facts and opinions gleaned from the specialists often never happens.   Even if the coordination happens, it is then never communicated to the patient and the family.  The authors suggest mechanisms to improve communication between individuals’ clinicians by supporting initiatives such as the TeamSTEPPS (Team Strategies and Tools to Enhance Performance and Patient Safety), an initiative developed by the US Agency for Healthcare Research and Quality.

The article by Oshima and Emanuel entitled, “Shared Decision Making to Improve Care and Reduce Costs” points out that the Affordable Care Act (ACA) calls for greater use of shared decision making in health care and that the implementation of that part of the law has stalled.  They call for more use of decision aids and more use of incentive payments to encourage providers to better use those decision aids and for funding the development of better shared decision making tools.  They make the strong argument that a good starting point is to begin with are the 20 most frequently performed procedures and to require the use of decision aids for those procedures.  They further argue that full Medicare and Medicaid reimbursement should be contingent upon those decision aids being used. 

I find myself reading all of this and agreeing with the analysis but wondering at the same time, if the cures for the two diseases of “bystander” effect and lack of shared decision making are leading us into a morass of forms, requirements and process that will do little to really solve the problems.  The bystander effect, while suggesting the need for better teamwork still requires a single person who feels ownership of all of the patient problems.  Traditionally that single person has been the primary care doctor.  But putting more pressure on the primary care doctor to do all that coordination, compilation of results and opinions, and communication is hard to reconcile with the challenges of primary care practice.  The primary care physician still has to evaluate, diagnose and treat while seeing more and more patients and having less time with each patient.  I, like others, hope the medical home initiatives and the ACO movement brings incremental improvement but for me and my family, I also hope that I always have one person I trust who will be by my side whatever my problem or problems may be.  That person may or may not be the doctor.  In our system at Accolade, we have developed a new profession; that of Health Assistant, who communicates, educates, coordinates and advocates while not diagnosing or treating.  They take the time to be the one person at the patient and the family’s side during the duress of illness.

While decision aids may be necessary for better shared decision making they are in no ways sufficient (and the authors do not suggest that they are sufficient).  Many patients and their families just do not have the skills to use those resources most effectively.  They are often riddled with the anxiety and depression that comes with illness that prevents good use of such tools.  They often have real barriers that have to do with family, financial and work concerns among other types of “non-medical” issues that prevents them from making the best choices.  I wonder if requiring a provider to hand someone a booklet or asking a patient to watch an interactive video will make all the difference.  I have my doubts even as I acknowledge that these tools are useful when used together with other communication and support techniques. 

In this mix, we need more humanity.  We need more caring.  While more tools and systems certainly will help, I doubt that they are the whole or even the most important parts of the answers we seek.