Power to the people: Patient in command

Blog Essay 32*

Bernard Lown, MD

Benedictions to patient-centrism, patient privacy, patient autonomy — everything-for-the-patient rhetoric — flow from the pervasive PR of the health establishment. The more I hear these jingles, the more my heart skips a beat. At my age I can’t afford arrhythmia’s. My experience as a cardiologist murmurs that these extra-systoles may be auguries of the hereafter.

I have learned that in our market culture, whenever a message is oft repeated, you can suspect a sales pitch. Indeed the patient looms large as a commodity to be seduced by medicalization, to be showered with drugs, subjected to endless tests, imaged to expose hidden recesses of anatomy, probed by magical genetic analyses for the Ur-self, and salvaged by so-called life-saving interventions. At the same time the patient has grown ever more Lilliputian. You the patient, with real or imagined dysfunctional biological machinery, is largely present; but you the sentient human being is largely absent. The contradiction is beyond Hegelian dialectics.

Time and patient-centrism

What is the significance of a human presence? What does true patient-centrism entail when medicine is a calling rather than a business transaction? First and foremost a doctor affords adequate time for a patient. There is no substitute for time. Shortcuts, fractionated multiple brief visits, having aides fill out rarely-looked-at forms, do not substitute for solid time. A doctor typing away into the informational catacomb of a computer is not patient time. These, rather than confirming, mock much-vaunted declarations of patient primacy.

Time is our most valued possession. When shared abundantly, it is a precious gift. Time is the mortar that cements the bonds of trust. Time exposes the wider human terrain of the social and psychological detritus that frequently compels a medical visit in the first place.

In manufacturing, diminished time for producing a commodity is the mark of efficiency. Not so in clinical medicine. The briefer the doctor-patient encounter, the more inefficient the process. Human as well as financial costs grow exponentially when shorting the time spent with a physician. The more time a doctor spends in listening and performing a thorough physical examination, especially during an initial visit, the more the patient and the health system profit. Time enables the professionalism of a calling to prevail over the powerful dictates of the market.

When we talk of cost in our market-driven society, the numeric exclusively speaks of the cost to providers. Ignored in these mountainous discourses about health efficiency is the magnitude of time invested by patients. Surfing the Net and shopping around for a second opinion take an enormous amount of time. The time spent making appointments and shuttling between robotic telephonic voices, the time for traveling to clinics, the hours spent waiting in doctor’s offices—all impose costs to the patient. And what of time away from work, or the cost for babysitters? And what about the prodigious investment of time by caregivers who shoulder the medical and nursing tasks hitherto the exclusive province of professionals in attending to family members prematurely discharged by the hospital? These impose fiscal burdens on individuals as well as on our economy. The substantial psychological stresses associated with such an unproductive investment of time fray the very health that the medical care system is structured to preserve.

My thesis is that genuine patient-centrism would drastically reduce health care costs and result in more healed patients and more fulfilled doctors. (This will be considered in future essays.)

So what is true patient-centrism?

We need to return to the central issue. Time has other dimensions than duration. It has continuity, depth, and intensity. Continuity is disrupted when the patient is interrupted after a sentence or two, or the doctor is diverted by being paged or called to the telephone, or by seeing several patients simultaneously, or by obtaining the patient’s history while typing away on a computer. Such behavior truncates potentially vital dialogues and constitutes negative time. It communicates a lack of caring. It subtracts from a doctor’s ability to foster trust, promote confidentiality, and thereby facilitate discovering what truly ails the patient.

When the doctor sits facing a patient at eye level, physical proximity promotes psychological proximity. The exchange thereby is intensified. The doctor earns the privilege of hearing hidden content, at times not only from others but also possibly from a patient who is not fully aware of what is truly troubling. Frequently the all-knowing patient does not know. Healing is about such an act of discovery.

“Interviewing a patient is never a stereotyped interrogatory. It is a dynamic interaction. The doctor constantly floats hypotheses. The patient expresses a distaste for something, an affinity for something else, or evades answering some question, raising new surmises to be explored.”(1) Patient-centrism demands cultivating the extraordinarily complex art of listening. To be able to focus on uncovering the meaning hidden in pauses, on deriving subtexts from inflections, on harvesting the rich catch floating in the spacious interstices between words or on words uttered haltingly. Silences may reveal where problems are hidden. A doctor craves discovering the gestalt of the unique human being searching for help.

Patient-centrism denotes sensitivity to the infirmities of old age. It requires tuning more empathically to the dawdling, the discursive, the forgetful, and the confused. The more psychologically impaired the patient, the more gentleness is needed: less interrupting, less pushing and demanding, less rush. How often have I heard the phrase “Doctor, I have used too much of your precious time already.” A mark of fulfilled doctoring, these words entwine human beings as in Martin Buber’s “I and Thou.”

The absent physical examination

What I have experienced as a patient and have witnessed in a long career of doctoring is quite different. Many doctors first encounter a partially disrobed patient in an examining room. (I am reminded of an old joke. Two young people totally undressed and in johnnies are awaiting a doctor in a multipatient examining area. One turns to the other asking, “Why did I have to undress? I have only a dislocated thumb.” The other, appearing even more perplexed, says, “I came only to deliver a package.”)

The doctor invariably stands, looking down on the recumbent patient while glancing at information gathered by an aide, poses a few perfunctory questions focused on the chief complaint, which frequently has little to do with what truly ails the patient. In the twenty hospitalizations that I experienced over the past five years, I haven’t had the house staff do a physical exam other than feeling my abdomen where I was hurting. At times it was preceded by placing a stethoscope on my chest, presumably to establish that my heart was beating. The hospital where this transpired proclaims unswerving dedication to the primacy of patients.

Rather than the manipulation of an aching shoulder, or the palpation of a painful belly, patient-centrism demands a comprehensive physical examination. Few exertions by a doctor resonate as well with a patient. Often after such an examination the patient is ready to expose what truly is troubling.

Memory prods me back sixty years. The lapse of time does not diminish the frisson of unease evoked by this remembrance. I recall the 85-year-old woman vividly. Though elegantly attired she seemed shrouded in mourning. An exhaustive history failed to divulge why she was full of aches. No bodily part was exempted from some complaint. Why had she remained single? Why was she evasive about her family — rarely the case with upper-class Boston Brahmins? Why the multiple charities that she was involved with?

After a thorough physical examination, in a leap of wild imagining, as I was gently squeezing her forearm, I asked, “If you want my help, why are you so secretive?” As these words slipped out, I regretted my brazen intrusiveness. Her body shivered. She looked like a cornered prey, head moving side to side. In a barely audible murmur she repeated several times in a funereal dirge, “No, oh no.” After an interminable pause, she half asked and half affirmed: “You know, then?” I remained silent, not aware of what I was supposed to know and not prepared for what was coming. Looking straight ahead, focused on some distant point of grief, she related a tale suppressed over a near lifetime.

Reared in a proper upper-class Boston family, she consorted at age 19 with a man in his mid-30s. Her parents vehemently opposed this relationship and warned that she would come to bad end. When she realized that she was pregnant, she obtained a job on a Vermont farm. There she delivered the baby by herself, then dropped the newborn down an old well. She remained a gentle, ghostly spinster, never revealing until this moment that she had murdered her own child. No amount of self-flagellation diminished the ache, assuaged the sleepless nights, or lighted the crushing weight of guilt. In this fateful examining room her lifelong search for absolution was now at hand.(2)

Prescribing drugs and patient-centrism

Patient-centrism extends beyond the initial diagnostic workup. It permeates every nook and cranny of doctor-patient interaction. That is what a calling is all about. Patient-centeredness involves minimalism in prescribing. I am convinced when a single drug is prescribed, the doctor probably knows what to anticipate. When two drugs are prescribed, uncertainty prevails. When three drugs are prescribed, a doctor hasn’t the foggiest notion how a patient will react. When four drugs are prescribed, God doesn’t know what might ensue.

During my cardiovascular fellowship with Dr. Samuel A. Levine at the Peter Bent Brigham Hospital in Boston, I was impressed with the magnitude of adverse drug reactions. When Dr. Levine had a new hospital admission, he stopped all drugs. At first I was horrified, anticipating a host of adverse effects. On the contrary, the large majority of patients rapidly improved.

At present poly-pharmacy is the fate of the elderly. By age 65 multimorbidity is the new normal, as are visits to numerous specialists. This inevitably results in a stash of drugs. In my experience ten or more medications are the rule. When a patient presents with new symptoms, the doctor is in a quandary. If the symptoms are related to the drugs, which of the many is not easy to unravel. Complicating the conundrum is that the same drug in its generic and brand formulations may differ in size, shape, color, and name. If the patient is shuttling to various consultants, identical medications may be prescribed. Sorting out what is going on requires sleuthing and infinite patience.

I learned painfully, and close at home, the harm that so-called minor drugs can inflict. My father developed vertigo. He had to retire from work and give up driving. He consulted to no avail numerous Boston medical specialists. He grew profoundly depressed. It was heartbreaking to watch a vigorous and very intelligent man so disabled and in despair. He denied taking any medications or health supplements. Once my mother overheard my medical interrogatory about drugs. She volunteered, “What about the eye drops?” Indeed five years earlier an ophthalmologist prescribed tetracycline eye drops for lid inflammation. Shortly after the eye drops were stopped, the disabling vertigo disappeared, but the psychological damage could not be undone.

Since that experience I insisted that patients with new symptoms bring in all their brand and generic drugs, including health supplements, vitamins, minerals, eyedrops, ointments, and lotions. At times I found duplicates as well as medications I had never been informed about. Many times it enabled me to identify the hitherto elusive causes for inexplicably bizarre symptoms.

An astounding lesson of my many decades of medical practice was the commonality of adverse drug reactions. Strange that I myself over several years was a victim. I developed a neuropathy, consisting of shooting, stinging, sharp electric shocks radiating from buttocks to toes, waking me nearly nightly from sound sleep. Visits to doctors and neurologists were unavailing. I was on no new medications and had been taking the same pills for more than a decade. I began to believe that drugs were implicated. The likeliest was a statin drug, the ever-popular Lipitor. Based on my cholesterol level I had reduced it to only three times weekly. Every physician I had visited dismissed my suggestion. Statins had a low-risk profile and almost never induced neuropathic pains. I had been taking it over many years without symptoms and in a minuscule dose.(3) Though “irrational,” I stopped Lipitor. Within three days the symptoms disappeared. For the first time in several years I slept through the night without discomfort. It seemed miraculous. Ever the skeptic scientist, I restarted the Lipitor. Within three days, the very same symptoms recurred, only to disappear again on drug cessation.

It should come as no surprise that adverse drug reactions are a serious problem among the elderly, who commonly take a multiplicity of pills, vitamins, and diverse health supplements. After all, every drug is a potential poison. This was already recognized in antiquity. The medieval alchemist, astrologer, and physician Paracelsus noted, “All substances (drugs) are poisons; there is none that is not a poison.” The right dose distinguished a poison from a remedy. Shakespeare in “Romeo and Juliet” phrased the same more poetically. Friar Lawrence searches for a potion to put Juliet in a sleep simulating death. On encountering a flower with medical powers he reflects: “Within the infant rind of this small flower / Poison has residence, and medicine power.”

Attending to patients with multiple cardiovascular risk factors, I never started multiple drugs simultaneously but spaced them over many weeks. The most important drug was started first. Several weeks later the next drug was to be taken, and so on. This permitted prompt recognition of which agent or which combination was the cause of an adverse reaction. Patient-centrism consists in investing time to readily detect — better still, to minimize — adverse drug reactions.

Patient-centrism involves empowering patients to take charge of their own management relating to some drugs for oft-recurring symptoms. Patients are far more informed about their own physical and emotional selves than the most astute clinicians. For example, patients with angina pectoris know when to take the magical nitroglycerin to ward off chest discomfort. Not even a doctor endowed with Solomonic wisdom would be able to navigate these uncharted waters. One patient, the CEO of a large corporation, would have long-lasting chest discomfort, and sometimes broke into a sweat, during board meetings. He related that if he took two nitroglycerin sublingually as the board meeting got started and one when a board member whom he intensely disliked began to talk, he was free of angina.

Another example of patients in control relates to the use of diuretics. I have never understood why doctors are intent in tormenting patients who accumulate edema. Invariably a powerful diuretic, such as lasix or torsemide, is prescribed daily. For many elderly, commonly afflicted with urinary incontinence, this is life disrupting. If they take the diuretic in the morning, they are housebound with frequent urination. If they use the diuretic in the evening, sleep, ever fragile, is disrupted. Daily diuretics induce dehydration in many, favoring a reduced blood volume and postural low blood pressure. These predispose the elderly to the most dreaded complication, namely, falling and fracturing thinned bones. Additionally, excessive diuretic use may deplete bodily potassium and magnesium, thereby increasing the likelihood of life-threatening heart rhythm disorders.

I consistently begin by prescribing a diuretic once weekly. The patient keeps a daily weight chart. A diuretic is taken only when body weight has increased by three pounds. The patient takes charge of diuretic management. Invariably diuretic use is markedly reduced. I have had patients shift from daily to monthly use. Monitoring their body weight instructs patients about high-sodium foods as a key factor in fluid retention. They learn also that frequent eating outside the home compels the use of more diuretics. Gaining control of the vagaries of one’s own body promotes a more secure life. In fact, much medical evidence, emanating primarily from Great Britain, suggests that being in control of one’s own life is a key factor in reducing the toll of heart disease.

Life style and patient-centrism

My father-in-law insisted that he wanted to die living rather than live dying. I have promoted this philosophic view among my patients. Living in the shadow of death’s imminence degrades and shortens life. I aimed to curtail hospital admissions, since these consistently deplete one’s sense of self-control. I have pontificated against seeing specialists, including myself! At times I took an extreme position. I still recall the frightened demeanor of GT, an athletic man in his 30s. He had visited multiple cardiologists on a monthly basis. GT’s family was indeed afflicted with cardiovascular disease. Episodic palpitations were his only cardiac complaint. A careful workup showed that he did not have a heart problem. GT had no risk factors for cardiovascular disease. He pursued a prudent and healthy lifestyle. When we finished, I did not suggest a revisit. Appearing perturbed, GT asked, “Are you firing me as a patient?”

My tart, seemingly reflexive, response: “Let me see you again in ten years.” GT grew agitated and inquired whether his situation was hopeless and my suggesting that he come back in ten years was a gentle way to get rid of him.

I responded, “You have no heart condition. You are not going to have a heart problem in the next decade. Tell me, how would I earn a decent living if I ‘fired patients’?” It evoked a laugh. I continued, “I want to see you frequently so I can send my three kids to college. But knowing how wholesome your heart is, my conscience does not permit exploiting the fears of a healthy man who will certainly outlive his doctors.”

GT left elated and I thought that was the last of him. He returned the same month exactly a decade later, proudly stating, “I have not seen a cardiologist in the past ten years.”

Patient-centrism demands not burdening a lifestyle with medical “don’ts.” These often relate to diet, work, travel, a change of job, or retirement. I counsel the principle of moderation. The ancient Greeks already comprehended the importance of “meden agan” (nothing to excess), as a way to achieve a healthy life. Another key element is deep engagement in communal living, beginning with family and friends and extending to bonding with neighbors, joining clubs, reading great literature, playing an instrument, and exerting oneself for the social good. A fulfilled life commonly is the best prescription for a long life.

The word “doctor” derives from the Latin“docere” (to teach). A doctor’s role ultimately is that of a teacher: educating and helping patients acquire healthy lifestyles. The primacy of the patient is affirmed when doctors practice their ancient art guided by modern medical science.

*This essay is dedicated to the many doctors who struggle throughout their lives to raise medicine above the dead level of a business and avoid assaulting patients mindlessly with technology.

Notes and Bibliography

1. Lown Blog Essay 14. “Reflections on a Half Century of Medical Practice: The art of listening to the elderly patient.” January, 2010, https://bernardlown.wordpress.com

2. Lown B. The Lost Art of Healing (New York: Ballantine Books,1999) p.26.

3. Statin drugs are reported to have an unusually low incidence of adverse drug reactions, ranging from 1 to 2 percent. These involve primarily muscle discomfort. The data appears solid as it is based on studies of tens of thousands of patients. In the Lown Clinics we found that one-fifth to one-fourth of patients who are on statins experience adverse reactions. Why this tenfold disparity? I can only conjecture. The Lown cardiologists take careful histories. Most so-called scientific drug studies are based on data gathered by technicians who fill out forms. The vast majority of these reported studies are sponsored by pharmaceutical companies who have scant interest in discovering the potential adverse effects of their drugs.

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