Clinical Gastroenterology and Hepatology 2020;18:1417–1426

NARRATIVE REVIEWFasiha Kanwal, Section Editor

Improving Patient-Provider Relationships to Improve HealthCare

Douglas A. Drossman*,‡,§,jj and Johannah Ruddy*,jj

*Center for Education and Practice of Biopsychosocial Care, DrossmanCare, Durham, North Carolina; ‡UNC Center forFunctional GI and Motility Disorders, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; §DrossmanGastroenterology, DrossmanCare, Durham, North Carolina; and kRome Foundation, Raleigh, North Carolina

Abbreviations used in this paper: DGBI, disorder of gut-brain interaction;EHR, electronic health record; IBS, irritable bowel syndrome; PPR, pa-tient-provider relationship; RVU, relative value unit.

Most current article

© 2020 by the AGA Institute1542-3565/$36.00

https://doi.org/10.1016/j.cgh.2019.12.007

Changes in our health care system have posed challengesfor the patient-provider relationship (PPR) and may havenegative consequences. For the clinician, due to lower re-imbursements from third party payers, and increasedadministrative tasks such as the electronic medical record(EMR) and certification requirements, clinic visit time isnow one-fifth that of decades ago. Clinicians may orderdiagnostic studies and imaging as a substitute for face toface time as it is seen to save time and increase relativevalue units (RVUs). As a result, the medical interview isvery abbreviated, and the physical examination is dis-appearing. This occurs at the expense of the physician-patient relationship. Now there is limited time to gatherrelevant information, to understand the context of theillness, and address patient needs. For the clinician there isreduced satisfaction, loss of the meaningfulness of caringfor patients, and possibly increased risk for burnout, andmalpractice. This may lead to negative attitudes and be-haviors toward patients, particularly for those withnonstructural diagnoses (eg, disorders of gut-brain inter-action) which are given lower priority than those withacute or structural illness. In turn, patients experience adiminution in their role in the relationship and respond toadverse clinician behaviors with a lack of connection,frustration, and at times self-blame and stigmatization. Toreverse this downward trend and re-establish an effectivePPR changes are needed: 1) improving educationalmethods to provide skills to enhance patient-centeredcare, 2) incentivizing educators who teach and clinicianswho practice patient-centered care, and 3) research sup-port to demonstrate successful outcomes in satisfaction,adherence and clinical outcomes.

Keywords: Patient-provider Relationship; Communication;Medical Interview; Patient Care; Health Care; Diagnosis.

Changes in health care are moving clinicians awayfromtheidealsofprovidingthepatient-focusedtypeof care that brought them into the field. There is greaterpressure to see more patients in less time and, with lowerreimbursements, toorderexpensiveand often unnecessarytests that ultimately raise healthcare costs. Further,mounting administrative tasks leave clinicians fewer hoursto see patients and may even drive doctors to disengagefrom patients during the visit. As a result, patients voicetheir dissatisfaction,1 and doctors become frustrated,

defensive, and increasingly vulnerable to burnout; thismay negatively affect patient safety and the clinicaloutcome.2 Is there a way to bring back the joy of thepatient-provider relationship (PPR) and save health care?

In this article the authors, a gastroenterologist (D.D.)and a patient advocate (J.R.) use evidence from theliterature and personal experience3,4 to discuss how thechanges in the business of medicine has impaired thepatient-provider relationship (PPR) leading to a deteri-oration in health care. We must reverse this vicious cycleto improve clinical outcomes. Our aims are (1) todescribe the bases for these healthcare system changesand (2) provide the rationale and methods to educateproviders to implement effective communication skillsand improve the PPR.

Part 1: The Provider

The Historical Perspective Leading to theCurrent Dilemma

Fifteen years ago, the author (D.D.) published anarticle5 about the changes in medical practice and edu-cation that led to a degradation of teaching and patientcare. The 1950s through the 1970s was the era of TVdoctors Marcus Welby and James Kildare. These weretimes when doctors had autonomy, treated patients atthe bedside, and made diagnoses from the history andphysical examination (“Listen to the patient; he is tellingyou the diagnosis.”—Sir William Osler, late 19th cen-tury)6 and there were few available tests. Imagingstudies were limited, and endoscopy and advanced im-aging methods such as computed tomography scanswere just beginning. Although medical science had notyet acquired dramatic breakthroughs occurring in recent

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decades, with limited third-party involvement, the phy-sicians had time to listen and examine their patients andmake decisions with their patients. From the 1970s and1980s to the time of the article’s publication in 2004,5

the growing influence of insurance companies led toreduced reimbursements influencing physicians to seemore patients, and primary care office time droppedfrom 45 to 15 minutes.7 The physical examinationbecame limited, highly focused, and often just a brief for-mality. While newer medical technologies and imaging ledto improved diagnostic capabilities, less information camefrom the patient who alone could provide the context ofthe illness. In 2001 the Institute of Medicine published,“Crossing the Quality Chasm: A New Health System for the21st century”8 and decried that there was a chasm be-tween patient and provider in American health care due tophysician centered practice and poor communication. Toclose this gap, “Patient centered care” was needed: clini-cians needed to be respectful and responsive to patientneeds and preferences with the patient helping to guideclinical decisions. Unfortunately, the publication waslimited in its exposure, and with growing influence ofdecisions being made by third-party payers, few of thesuggested recommendations were adopted.

The Current Health Care Environment

Since then, multiple issues have interfered with thePPR.

First, clinicians spend much less time with patients.Since 1975, despite the 4-fold increase in health-relatedjobs and over 20-fold rise in healthcare spending perperson, by 2019, the average office visit time had drop-ped to 12 minutes.9 Physicians need to see more patientsto earn enough relative value units (RVUs) to keep uptheir income. Additionally, RVUs prioritize procedure-based reimbursements over cognitive time, thus mak-ing face to face time a financial disincentive.

Second, the qualitative aspects of patient care, the “artof medicine,” have all but disappeared. The responsibilityto take a complete medical history and do a physicalexamination, to sit with the patient at the bedside and toquickly return patient emails and phone calls are nowmostly done by a diminishing group of seasoned expertswho lived thorough and benefitted from the experience.One man, after seeing multiple doctors, told the author(D.D.), “This is the first time any doctor has actuallytouched me to examine me.” Staring at the computerscreen and clicking boxes has replaced interpersonalengagement. What is lost are the essential nonverbalelements: being in close proximity, leaning forward,making good eye contact, and using affirmative nods andgestures.10 As a result, patient needs for engagement arenot being met.11

To the uninitiated, these activities possibly seen as“rituals” are highly valued by patients. They improve the

PPR via verbal and nonverbal engagement, and includingwhen a patient is distressed, a physical touch. Theyincrease patient satisfaction, produce positive neurobio-logical changes,12–14 and lead patients to provide morespecific and meaningful information that helps establishclinical priorities. Yet, these behaviors are being jeopar-dized due to fragmentation of care to multiple providersand “shift work” schedules. Patients and even thehealthcare team may not know who the main physician isas the sense of “ownership” is lost.

Thus, the “art of medicine” is no longer consistentwith personal workstyle because of time pressure, theperception that technology is more efficient, limited un-derstanding of the positive consequences of effectivecommunication skills, and little training to implementthese skills. The rectal examination is rarely done espe-cially by younger physicians who claim discomfort andlack of training yet up to 10 potential diagnoses can bemade at no extra cost.15 Importantly, the loss of theseclinical behaviors diminishes the patient’s role byremoving them from participation in their care. Yet,effective communication methods and patient-centeredcare brings the patient and provider fully into humanto human interaction, which then facilitates more effec-tive technology is a diagnostic resource and may berelied upon by some clinicians as a replacement forclinical observation and reasoning. One resident notedabout a patient with a cough, “Why talk with the patientor examine the chest when I can get a CT [computedtomography]?” Chronic human illness follows a bio-psychosocial, not a morphological construct,16 so toomuch reliance on technology can be ineffective,misleading, and costly. Within gastroenterology, themedical interview uses symptom based criteria to di-agnose disorders of gut-brain interaction (DGBIs),17 andconfidently communicating the diagnosis increases pa-tient acceptance and reduces unneeded endoscopy.18

Good clinicians are aware that patients with active in-flammatory bowel disease may have little or no symp-toms, and patients with minimal or no observant diseasemay have severe symptoms.19,20 Even with gastro-paresis, delayed gastric emptying does not correlate withsymptoms.21 Thus, learning the illness experience fromthe patient leads to proper diagnosis, which is thencorrelated with the pathological or physiologicalfeatures.22

Fourth, clinicians are forced to spend more adminis-trative time studying and documenting to maintain cre-dentialing requirements: Maintenance of Certification,2-year reappointment credentialing, Occupational Safetyand Health Administration certification, training for sex-ual harassment, bloodborne pathogens, tuberculosisinfection, fire and environmental safety, Health InsurancePortability and Accountability Act, and opioid use. Theelectronic health record (EHR), required for billing ser-vices, occupies two-thirds of clinic visit time and reduces

Figure 1. Survey asking medical patients to describe their provider in 2 words after a clinic visit. Word clouds represent thefrequency of item responses. (A) Positive and (B) responses.

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professional satisfaction in multiple ways: poor usability,time-consuming data entry, interference with face-to-facepatient care, inefficient and less fulfilling work content,inability to exchange health information between EHRproducts, and increased attention toward billingdocumentation over the clinical and contextual aspectsof care.23 These factors may also contribute toburnout24 and possibly attrition.9 Even documentationof patient satisfaction is missing its mark. The Con-sumer Assessment of Healthcare Providers and Sys-tems is supposed to assess patient satisfaction.However, much like the EHR, it uses questions designedto improve reimbursement (eg, room cleanliness, get-ting medications on time, hospital staff responsiveness)rather than identifying scientifically proven factors ofpatient satisfaction (eg, trust, likeability, activelistening, compassion, hope).25,26

All this affects how patients perceive their providers.In a large internet survey of irritable bowel syndrome(IBS) patients, 40% were not at all or only a little bitsatisfied with the care provided by their physicians.1

After a clinical visit at a medical institution, patientswere asked, “Please describe your provider in today’svisit in 2 words.”27 Word clouds represented the fre-quency of patient responses. The positive items(Figure 1A) were few: knowledgeable, professional, andcaring. However, the negative ones (Figure 1B) werehigher in number and focused on the doctors beingrushed, unconcerned, indifferent, uncaring, arrogant, andeven rude. Clinicians can improve patient perceptions ofthem through communication skills to address theirunmet expectations.11

The Challenge of Treating Patients With DGBIs

In Western culture, more credibility is given tosymptoms derived from structurally based diseases.Thus, with DGBIs where imaging and laboratory studies

are negative,17 psychological stigma is often imposed.28

Clinicians not well trained in the diagnosis and treat-ment of these patients may feel ineffective in managingthem or see them as out of their realm of responsibility.This can lead to poor communication, negative atti-tudes,29 ordering of procedures unlikely to yield mean-ingful information, or focusing their time on “organic” or“sicker” patients. The more comprehensive bio-psychosocial model of illness and disease30 is replacingthis dualistic approach. It embraces neuro-gastroenterology31 and gut-brain interactions that im-proves our understanding of DGBI and leads to new andmore effective treatments. There is a need to providebetter training to providers so that they can use this newscientific knowledge along with effective communicationskills to gain competency and engage with and actuatepatients in their care.

Using Effective Communication Skills toImprove Patient Care

In this section, we provide the rationale for imple-menting patient-centered care in a time efficient mannerto improve patient and provider satisfaction as well ashealth care. This applies to patients with all gastroin-testinal and medical disorders.

Effective communication improves diagnosis and clin-ical decision making. The core principles of effectivecommunication (active listening, addressing the patient’sagenda, providing empathy, and validation of patient’sbeliefs and concerns)32 motivates the patient to providethe clinical and psychosocial information needed fordiagnosis and management. They establish a trustingenvironment for patients to share their deepest thoughtsand feelings, which may contribute to or be generative ofthe illness. This information also helps the clinician un-derstand the full impact of the patient’s illness on themand their worldview.

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Effective communication creates a collaboration ofcare. Some physicians, having a “hypertrophied sense ofresponsibility,” think that they should do more when theclinical encounter does not go well. However, patient-centered care means shared responsibility. This em-powers the patient and offloads any undue sense ofburden on the part of the clinician. Shared decisionmaking often identifies other treatment options that thepatient is motivated to engage in, and may reducemalpractice suits.33 When collaboration of care througheffective communication is established, clinicians liketheir patients more and vice versa.34,35

Effective communication establishes mean-ingfulness. Beyond pleasure or happiness (ie, “hedo-nism”), the highest levels of well-being and satisfactionrelate to the ability to actualize our human potential, byfinding meaningfulness in what we do (“eudaimo-nism”).36 Job dissatisfaction, burnout, and early retire-ment are attributed to multiple encumbrances that divertattention away from what clinicians find meaningful inthe workplace. In a qualitative narrative study of physi-cians addressing what is meaningful, Horowitz et al37

found that nontechnical humanistic experiences withpatients (“.crossing from the world of biomedicine intotheir patient’s world.”) was the critical factor; beinghuman and present with the patient was most valued.The PPR is the most commonly reported and powerfuldeterminant of physician satisfaction.37,38

Effective communication saves time. Clinicians maysay that they are too busy to use communication skills asthey perceive their time must be prioritized towardmaking a proper diagnosis (implying the use of focused,disease-based questions). However, a skilled patient-centered interview saves time by asking fewer ques-tions while capturing the key features of the diagnosisand an understanding the patient’s biopsychosocialworld. Effective nonverbal and verbal questioning stylealso increases trust and engagement, which facilitatesshared decision making, leading to optimal treatment. Apatient-centered communication style compared with amore traditional one brings more meaningful and accu-rate information in the same amount of time (https://www.youtube.com/watch?v¼BeHPpvuB_mc).

Effective communication provides benefits to the pa-tient and clinician and improves the clinical outcome. Thebenefits to the patient include creating engagement andtrust, establishing the patient’s agenda, determining therelevancy of the data, receiving clear information, anddetermining a mutual set of goals and treatment plan.32

For the clinician, studies show that communication skillstraining improves satisfaction and empathy, reduces thesense of emotional exhaustion, and reduces “flooding”(the emotional response to an overwhelming clinicalsituation with no perceived control) and burnout.39,40

Finally, regarding outcome, an effective patient-provider interaction reduces symptom severity andemotional distress, improves satisfaction and coping, andreduces the use of healthcare services.32,41,42

Putting Technology and Evidence-BasedMedicine in Perspective

In his book, Deep Medicine: How Artificial IntelligenceCan Make Healthcare Human Again,9 Dr Eric Topol ad-dresses the future impact of artificial intelligence tovirtually eliminate the human component to diagnosis.Artificial intelligence will be more accurate than humansin interpreting imaging or laboratory data and makingdiagnoses from a wide array of clinical information.However, he cautions that this will then require pro-viders to address the clinical context to which this in-formation is applied.41 For this to occur, communicationskills are needed to engage with the patient to interpretthe information. By transitioning away from being atechnician, the clinician may re-establish a personalrelationship and enjoyment in the process of the care.

In the 1990s, evidence-based medicine offered toadvance intuition-based medicine by applying scientificevidence for making clinical decisions. However, manyclinicians did not feel it met the needs of everydaypractice.43 For example, when guidelines from clinicaltrials are applied to patients, only a proportion of pa-tients will respond, and if not advised on the rationale fora medication, the patient may not take it. Evidence-basedmedicine addresses statistical likelihoods for treatmentbenefit but does not cover the nuances that differentiatepatient motivation to take medication or even theirpersonal likelihood for clinical response. Chang andLee43 proposed to replace evidence-based medicine with“interpersonal medicine”: an approach that is responsiveto individual patient circumstances, capabilities, andpreferences. It requires that clinicians not rely on harddata alone, but rather use it in the context of collabora-tive relationships built on empathy, trust, and effectivecommunication.

How Can We Make It Happen?

Given these challenges, a great deal must occur toimplement the adoption of patient-centered care andimprove communication skills.

Medical education needs to address the process ofcare. Medical school, graduate, and postgraduate educa-tional curricula and continuing medical education trainingprioritize content-based information as well as the diag-nosis and treatment of disease. They must also includeprograms in clinical reasoning, communication skills, andthe overall process of care using experiential learning andactive participation. While lectures can provide a knowl-edge base, retention is limited. Learning best occurs withandrogogic (as opposed to pedantic) principles: beinglearner-centered, problem-focused, addressing theimportant work needs, and motivating learning throughinternal drives.44 Optimal learning also requires educa-tional modalities beyond the classroom: small grouplearning, patient- provider demonstrations using patient

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simulators, case video presentation and discussion, facil-itated role-play exercises, and sharing of personal chal-lenges in the care of patients (eg, Balint groups).45 In thisway, clinicians can capture the critical skills of interviewtechnique, the physical examination, nonverbal commu-nication, body language, and proxemics. Table 1 offersverbal and nonverbal methods that can be applied toimprove communication. These skills are useful acrossdisciplines and can help when coordinating team-basedcare. We believe that providing such educational pro-grams can be an immediate achievable goal.

To meet some of these needs, the Rome Foundationhas made efforts to improve education in the communi-cation area. These include at no cost a study guide(https://romedross.video/2YphMDd) for self-learningand programs to teach clinicians and train facilitatorsto implement this knowledge (https://romedross.video/2KPTYzC).

Support for research is needed to provide vali-dation. There is limited research assessing patient-centered care and effective communication skills. ANational Institutes of Health consensus conference pro-posed that communication skills training programs couldbe studied as an intervention that leads to improvedpatient-provider satisfaction and clinical outcomes.46

This has not yet been implemented. Research studiesneed to go beyond assessing patient satisfaction to alsodemonstrate improvement in medication adherence,reduced healthcare utilization, improved clinical out-comes, and ultimately reduced healthcare costs. Inaddition, qualitative research could capture what keystakeholders’ needs and desires are when it comes topatient-centered care. With this type of evidence, itwould be easier for payers to reward clinicians for a jobwell done, and the patients will benefit. We believe thisto be an achievable goal over the next decade.

Teaching and learning effective communication skillsand patient care must be incentivized. Incentives areneeded for clinicians to maintain their motivation for andpractice of these skills. We must reward scholarly clini-cians by having their learning institutions, third-partypayers who benefit from these clinicians and evencongress show their support financially.5 Third partypayers should reward clinicians who reduce healthcareexpenses through good patient care by prioritizing RVUsto favor cognitive skills at least as much as proceduraltasks. Certification requirements such as Maintenance ofCertification, and continuing medical education creditsshould include patient care skills as well as disease-based knowledge. Finally, specialty boards mustinclude expertise in communication as well as patient-centered care and implement certification programs foracquiring these skills.

We also must reward the educators that teach thesecurricula with salary support via reallocation of institu-tional overhead and providing increased administrative,teaching, and research time. Unfortunately, the schedulesof good educators are often consumed by clinical service

because they do their job well, yet this limits their careerdevelopment. Finally, bonuses and promotions should beprovided to those demonstrating good educational skills.We believe that evidence from research that validatescommunication skills will drive incentivization.

Part 2: The Patient

In Part 2, experiences are reported from the patient’s(J.R.) perspective.

“Satisfaction, the idea of how positive someone feelsabout an encounter is an important metric, but experi-ence encompasses more than just a sense of satisfaction.Satisfaction is in the moment, but experience is thelasting story.”—Jason A. Wolf, PhD, President of the BerylInstitute

The Patient’s Role in the Care

This quote struck me that patient satisfaction and theoverall patient-provider experience could be improvedwhen communication also includes the patient’s experi-ence. Many healthcare organizations today are assessingpatient satisfaction developed by payers to provideproper reimbursement more than addressing true pa-tient satisfaction. Traditionally, the patient’s perspectivehas been overlooked, ignored, or dismissed.4,47,48 How-ever, since 2000, this has been changing, with a growingnumber of published articles by patients and from phy-sicians about patient-reported outcomes and qualitygoals. Patients now voice their frustrations of thehealthcare system, their unmet needs, and at times thepoor care they receive in online forums, blogs, and evenmainstream medical journals.

Patients and physicians must take responsibility fortheir distinctive and equally important roles to improveoutcomes. As a patient with a chronic gastrointestinalillness and patient advocate, I learned that when Ipassively accepted a physician’s directive, the outcomewas nowhere as positive as it is now when I share theresponsibility of care with my current provider.3 Why isthat experience so hard to achieve in our healthcaresystem? Let us look at the issues that drive the negativepatient experience and ultimately, poor outcome.

Gender Stereotyping

Just like female providers compared with male pro-viders are not given the same salaries or career oppor-tunities, female patients are not treated with the sameattention in their medical care. Historically, many womenare taught to observe certain social codes: be polite; asknicely; wait your turn. Because of this, when seekingcare, we often find ourselves begging, rather thanasserting, to be taken seriously, and providers may cometo expect this. With wait times in emergency rooms aslong as 110 minutes and no real follow-up or established

Table 1. Verbal and Nonverbal Behaviors Affecting Communication32

Behavior Facilitates Inhibits

NonverbalClinical environment Private, comfortable Noisy, physical barriersEye contact Frequent Infrequent or constantListening Active listening—questions relate to what patient says Distracted or preoccupied (eg, typing)Body posture Direct, open, relaxed Body turned, arms foldedHead nodding Well timed Infrequent, excessiveBody proximity Close enough to touch Too close or too distantFacial expression Shows interest and understanding Preoccupation, boredom, disapprovalVoice Gentle tone Harsh, rushedTouching Helpful if well timed and used to communicate

empathyInsincere if inappropriate or not properly timed

Synchrony (arms, legs) Concordant DiscordantVerbalQuestion forms Open ended to generate hypotheses Rigid or stereotyped style

Closed ended to test hypotheses Multiple-choice or leading questions (“Youdidn’t.did you?)

Use of patient’s words Use of unfamiliar words or jargonFacilitates patient discussion by “echoing” or

affirmative gesturesInterruptions, undue control of conversation

Uses summarizing statements Not doneQuestion/interview style Nonjudgmental Judgmental

Follows lead of patient’s prior comments (patient-centered)

Follows own preset agenda or style

Use of a narrative thread Unorganized questioningAppropriate use of silence Interruptions or too much silenceAppropriate reassurance and encouragement Premature or unwarranted reassurance or

encouragementCommunicates empathy Not provided or not sincere

Recommendations Elicits feedback and negotiates No feedback, directly states viewsAsks/provides medical

informationAs appropriate to the clinical issues Too many biomedical questions and too detailed

informationAsks/provides psychosocial

informationElicits in a sensitive and nonthreatening manner Ignores psychosocial data or asks intrusive or

probing questionsHumor When appropriate and facilitative None or inappropriate humor

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plan of care,48 I found myself offering excuses: “I amsorry to bother you, I know you are busy. You probablyhave patients who are sicker than I am, but could youplease help me.” After a car accident, I recall sitting for 3hours on a gurney in the ER with a male colleague whowas also injured. I had chemical burns all over my face,chest, eyes, and mouth, left from air-conditioner coolant,yet I was not offered wet cloths to wipe off excesschemicals. My male colleague was immediately calledback to triage, given a clean gown and wet cloths to cleanup, and was immediately seen by providers, while I wasleft in stained, dirty clothes, on a gurney in the hallwayfor hours. Unfortunately, the attending physician came tosee me just after I tried to clean myself up in the rest-room, and after not finding me went on, leaving me withburning skin, eyes and breathing difficulties until hereturned 4 hours later.

Pain Management

Gender stereotyping also leads to the belief thatemotional rather than physical causes lead to women’s

pain, even in the presence of clinical tests which showtheir physical nature.47,49 One week after having a rec-tocele and cystocele repair, I developed severe pain andwent back to the gynecologist. I was not examined andinstead shamed; I was told that even 78-year-old womenhave the same procedure as I did without such post-operative pain. Then I was told there was nothing wrong,offered ibuprofen and gabapentin, and sent out withoutany effort to follow up on the outcome. A few days later, Iwas examined by another physician who discovered Ihad an internal ulcer from a ruptured stitch that becameinfected, and I was then treated appropriately.

This story reaffirms studies that show that femalesuffering with pain is minimized, mocked, and coaxedinto silence.48,49 In her comedy special, Wanda Sykesrecalled having severe postoperative pain following adouble mastectomy. She asked for stronger painmedication but was treated with ibuprofen while hermale friends were given opioids for much less severeconditions. This has been referred to as “Yentl” syn-drome: the paradox of women being underdiagnosedand undertreated, leading to adverse healthcareoutcomes.50,51

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Similarly, physicians may incorrectly diagnosewomen with chronic pain as having a mental healthcondition without proper evidence and are morelikely prescribe psychotropic drugs.48,50 Thus, menand women can receive different diagnoses and treat-ments, and respond differently, even with the same clin-ical presentation!

Impact on the Patient

These experiences have consequences. When youask a woman with chronic pain about their illnessexperience, you will often hear stories of guilt,shame, embarrassment, and even depression. Theyare vulnerable to become self-critical unnecessarily,and experience frustration, anger, and social isola-tion.48 Further, the burden of a chronic illness canimpair their ability to work, care for loved ones,interact with others, and perform basic personaltasks. Concerns about bowel habits with IBS impacton dating, intimacy, and sexuality, leading to furtherisolation.3,50,52

Provider Stigma and the Patient

When physicians attribute a negative stigma to pa-tient symptoms, the impact on the patient is profound,especially if they adhere to this stigma. Some may justreject the diagnosis, but if they accept it, they maydevelop feelings of guilt and self-blame for having acondition not perceived as “real.” The sense of shamethat follows inhibits their ability to adequately expresstheir thoughts and feelings with their providers, leadingthem to minimize the severity of their symptoms.4,53

Statements or inferences of being “crazy” “hysterical,”or “unstable” disengages patients from their care, fearingthat they will be labeled as untrustworthy or not cred-ible. About 50% of IBS patients do not inform theirfamily members and friends about being diagnosed withthese disorders based on a fear of being misunderstoodor not believed.52

As a patient with IBS, when a physician told methat I was “fine” because of a lack of structural evi-dence for my symptoms and that I should eat yogurtand practice yoga, I immediately went to a place ofshame. I was embarrassed for wasting my and thephysician’s time for what he felt was “nothing serious.”I was no longer willing to share the impact of thesymptoms on my life because I assumed that he nolonger cared.3

Physicians are often ineffective in providing educa-tion. If they see these disorders dualistically, they mightnot clearly communicate that their diagnosis is “real,”because they do not believe it themselves.3,28 Further-more, tentativeness in conveying the diagnosis leads tomore tests and leaves patients unconvinced.18 Then, anyrecommendation for a neuromodulator will be rejected

by the patient because of the perceived stigma and a lackof rationale for it. Why would a patient coming to thedoctor for bowel disturbance and abdominal pain, un-derstand or agree to taking such a medication or a psy-chological treatment unless the physician first gives aclear diagnosis and provides the physiological rationaleto justify these treatments?3,4

The Role of Stress

All of this diminishes patient understanding as to therole of “stress,” as it directs it to being “in my head.” Eventhe best clinicians struggle to reframe this understandinginto a clear perspective. Proper validation and patientacceptance involve communicating the bidirectionality ofstress and gastrointestinal symptoms: chronic and se-vere symptoms can cause psychological distress, whichaffects the severity and chronicity of the illness; it is not apsychiatric illness.4 Explanations that cover the dysre-gulation of the brain gut axis for these disorders can bevery enlightening for patients. For me, hearing that mysymptoms were part of a real, medical diagnosis ofpostinfection IBS validated my years of uncertainty andemotional distress wondering if I was overreacting to thepain and physical symptoms. The diagnosis made memore willing to listen to my doctor’s suggestion fortreatment, including the use of a neuromodulator.3,4

The Power of a Physical Exam

A physical examination can make a patient feel vali-dated because the clinician has demonstrated acommitment to engage with the patient in the effort todiagnose. Many physicians are moving away from thispractice because of shortened time with patients, andperhaps less training in this skill, and this may lead tomore testing.54 In the last 10 years, I can count on onehand the number of times that a doctor performed aphysical examination. But when done, it had a profoundimpact on my perception of the physician’s concern forme and their interest and understanding of my symp-toms. After spending so much time doing their electronicmedical record on the computer, a doctor stepping awayto do a physical examination can provide a much neededconnection. It changes the dynamics of the visit bycommunicating confidence, a sense of security, and trust.Then the patient to feels more connected to the doctorand to trust in their diagnosis and proposed treatment.Thus, the physical exam provides a more positive expe-rience, prompting the patient to continue to engage withthe physician.54

Patient Education

The Latin word for doctor is docere, which means “toteach.” Isn’t that amazing? As a former teacher, I love thisas it conveys that physicians are in the perfect role not

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only to diagnose and treat, but also to educate patientsabout their conditions and treatment options. Patientswant to be educated, and if physicians do not provide theproper information to them, they will seek it from lessreliable sources (Think Dr Google).

There has been a remarkable growth in educationalinformation available to patients through brochures,videos and internet programs targeted toward patients.While this is an educational asset, patients also want thisinformation to be a resource rather than a substitute forknowledge acquisition. The physician needs to providethe proper context for this information and to target ittoward the patient’s interests and level of understanding.Patients desire scientifically backed education that isrelevant and thorough,52,54 and when they go to theinternet, the physician needs to address misinformationto help the patient gain an accurate understanding.8 Thebest and most effective form of education is in the office,one on one with a physician or clinical care team mem-ber having a dialogue and then using diagrams and ma-nipulatives to show mechanisms of action, physiologyand the rationale for treatment. No matter what type ofeducation a physician chooses, there needs to befrequent checks for understanding along the way.3,47

This interactive learning creates improved understand-ing, shared decision making, and treatment adherence. Italso motivates the patient to take some control back anddevelop self-management strategies.3,8,32

Setting the Follow-Up Appointment

With chronic illness, the physician should initiate areturn appointment instead of leaving that responsibilitywith the patient. Until I met my current gastroenterolo-gist, I was told that I should return if needed; there wasno long-term plan of care. Patients do not want to beabandoned in their pain. When a provider takes theinitiative to establish ongoing care, an unspokencommitment is communicated that the physician isinvested in the patient’s well-being, and the patient nolonger feels alone. This sets the stage for positive en-counters going forward.54

Hopeful, Not Hopeless

Finally, patients need hope. From struggling with achronic condition, I frequently feel alone. I wonder howto communicate how I feel even though I might look“healthy.” As a patient advocate, I hear from patientswith IBS, inflammatory bowel disease, gastroparesis,chronic constipation, and chronic pain about theirstruggles and their searching for a glimmer of hope. Thestories are the same; they wonder if they are alone intheir experience, whether or when it will end, or willthey ever be able to live a “normal” life again. Thesethoughts and feelings are often associated with severesymptoms, poor quality of life, and feelings of being a

burden on others, all of which cause them to withdrawfrom family, friends, and coworkers.52 As a “peoplepleaser,” when my symptoms are severe and I am unableto participate in activities with friends or family, I feelguilty for letting others down because of my illness.3

These thoughts and feelings and negative provider in-teractions leave the patient with a profound sense ofhopelessness, doubt, and self-blame.50,52

A physician can provide hope by rephrasing expla-nations of the condition to include optimism and avail-ability in the care. Yes, even a lifelong condition can bemanaged and people can regain a sense of control,manage their symptoms and live an active life.55 Letpatients know that they are not alone, that other patientsstruggle with the same symptoms, and that together youwill work to get better no matter what arises along theway.3,32

William Osler once said, “The good physician treatsthe disease, the great physician treats the patient whohas the disease.” This is so true for patients and really allthat we are looking for. Someone to listen, to care, and toprovide long-term support. This is the experience thatencompasses more than patient satisfaction. It is thelasting patient-provider story that we all desire.

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Reprint requestsAddress requests for reprints to: Douglas A. Drossman, MD, Center for Edu-cation and Practice of Biopsychosocial Care, Drossman Gastroenterology, andthe Rome Foundation, 901 Kings Mill Road, Chapel Hill, North Carolina 27517.e-mail: [email protected]; fax: (919) 929-7919.

Conflicts of interestThe authors disclose no conflicts.