I find myself involved not infrequently with medical cases in which a declining patient suffers a primary insult and then starts down a medical, surgical or “rehabilitative gyre” of complications: therapy followed by complications of the therapy given to treat the complications of the therapy. The analogy would be that of a log flowing downhill from a peaceful creek, encountering a small eddy, twisting and turning as it gained speed in its downward spiral. This often involves a person of very advanced age or an older patient with multi-organ disease.
At times we generalists encounter these patients in the last phases of one of these cascades. A recent case comes to mind of a woman in her late eighties who at baseline had ambulatory dysfunction, obesity and atrial fibrillation treated with anticoagulants. She had suffered a fall with a complicated fracture of the ankle region. She underwent surgical repair of the fracture, then complications arose with anticoagulants employed for DVT prevention and her atrial fibrillation. She was transferred to a skilled facility where her rehabilitation did not go well. She developed pneumonia which was presumed to be health care associated, went on the usual antibiotics for the same and returned to the nursing home where she remained bed bound. At the nursing home she developed C. difficile colitis, failed management as a patient there and was again hospitalized. She failed hospital treatment for C. difficile and began to go into renal failure and heart failure. She underwent colonoscopy for diagnosis and instillation of Vancomycin directly into the colon. She was attended to by multiple sub specialists and her code status was DNRcc A. Due to dysphagia she was placed on total parenteral nutrition. I was called to see her when I was filling a day in the schedule for another doctor. Her ventricular rate was slowing, the nurse was worried.
I use the word “entropy” to describe this sort of scenario because clinically the patient as an organism, and the medical care being offered, appear to be descending into disorganization.
The elderly bones cannot tolerate relatively minor trauma, the lung becomes infected, the immune system cannot tolerate antibiotic treatment, the kidney fails and then the heart forgets its duty. She had slipped into a delirium. There is no end to procedures, medications and devices for each one of these events. Short of her heart ceasing to function at all (her resuscitation status is dnrcc A) she can be subject to any procedure; she could presumably be a candidate for surgery, a pacemaker, a left heart catheterization, hemodialysis, each one adding further threats of complications.
When I saw her she was uncomfortable, lethargic, moaning and unable to verbalize well enough to discuss her multiple problems. Her daughter who was her medical POA was at the bedside. In terms of patient and family communication technique, how would you proceed?
I have no algorithm for this, but I think in this kind of case, when you can only know what could be seen from the medical record, it is important first to listen to the daughter who has been caring for this person and who is now the decision maker. “Tell me what has happened to your Mom in the last few months,” is a good starting point. Do so in the manner of pure inquiry without judgement. The decision maker’s perception of what has been happening and expectations of care then often become apparent. In this case the daughter was very aware of therapeutic failure. Another good question, after you have listened to that person is to find out what kind of person the patient was and what preferences that patient had regarding medical care at an advanced age. “Did your Mom ever talk about what kind of care she wanted if she became so very ill?” I have been surprised how many times I have heard statements such as, “Well, she never wanted this.” (When I hear this it dawns on me that no one has ever asked.) You can then have a conversation regarding goals, which goals the family has and whether they are
realistic. If their goals are unrealistic you can use the “I hope but I am afraid” statements: “I hope we can get your Mom back on her feet, but I am afraid it might be too much to expect of her with the multiple organs that are failing her.”
If you are under the impression that the patient has no hope of what the patient and family would call a “meaningful recovery” you can proceed to a discussion of palliative care. Most people do not know what this is and it needs definition. I like to emphasize that it is care that devotes itself to the comfort and dignity of the patient and to management of symptoms in a non-invasive way. It is a conversation that every hospitalist should have, in a sense, rehearsed and ready, so that the family understands it is an end to the tethering of the patient to monitors, an end to laboratory investigations and procedures and an end to external means of organ replacement. If the family is concerned regarding hunger and thirst you need to be prepared for that conversation.
When I encounter patients such as this one I am reminded of Yeats’ opening verse to his poem, The Second Coming:
Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart: the center cannot hold…
In falconry the hawk or falcon is trained to hunt by a falconer, and hunts by flying in circles (gyres) above potential prey, directed by calls from the falconer.
We often become like the falcon of the poem, medically proceeding through our “widening” gyres, neglecting to listen or try to hear the patient or her kin.
A colleague and master of medical neologism, Dr. Dean Frate, coined a new term, “diagnonsense,”to characterize some of the work in which we physicians engage. I’m introducing a new word myself, “theraputrids,” for some of the wild prescribing that occurs in conjunction with diagnonsense.
Diagnonsense includes ordering a CT scan of the head in a patient presenting with cervical radiculopathy, a carotid ultrasound in a patient suffering from syncope, and then it progresses downwards from there. There is the practice of ordering a dimer on a patient with no suggestion of pulmonary embolism, a troponin on a 93-year-old with cellulitis, ankle/brachial ratios on someone who needs amputation, mammography for 89-year olds and a CT of the abdomen on almost everyone. Seems ridiculous as you read it, doesn’t it?
Oh medical mates, we have seen it all, have we not? Weekly or monthly head CT’s for narcotic addicted patients presenting to the ED with “headache.” In one patient I documented fourteen head CT’s within a year. That whiff of atelectasis diagnosed as pneumonia. Serial phlebotomies to monitor what does not need monitoring, or that induce anemia which leads to hematological consultation. Patients nearing the end of life subjected to screening colonoscopies. Imaging embarked upon for one problem that reveals some other lesion and then leads to an avalanche of radiological misadventures.
The best recent anecdote of this was an engaging lecture I attended delivered by a radiologist regarding the state of imaging in America. Not surprisingly, the field of radiology is in the midst of explosive growth. Warning that perhaps some of the imaging was unwarranted, she presented the case of a radiologist who decided to undergo screening CT colonoscopy. The colon was fine, but the CT showed an uncertain lesion of a kidney and the liver. Biopsy of the liver was negative. Biopsy of the kidney lesion was complicated by bleeding requiring operative intervention. The lesion was benign, but the physician patient lost five months from work with medical costs over fifty thousand dollars.The lecturer estimated the magnitude of radiation we are showering on the American public in the range of multiple Hiroshima bombs.
Ay, colleagues, you could pull out your hair over electronic order systems that make you consider Heparin or Lovenox in patients admitted for Coumidin coagulopathy and gastrointestinal bleeding. Then there are the vague radiological reports suggesting the need for further imaging. Do we heroically act upon Vitamin D levels that are meaningless in terminally demented patients? There are times mates, are there not times, when mesmerized at the computer screen, you just want to scream to be let out of this movie?
Take heart. Many clinicians are writing about and researching these issues. Choosing Wisely is an initiative by the American Board of Internal Medicine. Go to their website; there you can find links to sane guidelines for diagnosis and treatment that attempt to minimize waste, unnecessary testing and therapeutics. Try to have meaningful conversations with patients regarding the value of the things we do. “Think twice, stick once.”
I know little about human evolution, but my superficial reading in the subject allows me to say that most scholars and researchers assert that at some point we became truly bipedal and spent most of our time standing erect and that was the game-changer. At that point the humanoid creatures were able to range out of the forest and on to the sunlit savanna of Africa and walk their way to becoming the great predator of earth. Everything changes. The human hand and brain continued to evolve, the human skin developed intense pigment to protect itself from the sun, and the creature goes north and west. This is the great walker of the world.
It turns out that we can also consider ourselves to be “obligate” bipedal walkers. When we do not walk, research repeatedly shows, bad things happen. Even when you are ill, bed rest is bad for you. Obesity, diabetes, cardiovascular disease, functional decline, venous thrombosis is all associated with too much “rest’ from the task that evolution has bequeathed to us. It is sad to reflect that the automobile and the fast food joint are perhaps the cultural guarantors of the modern American physician’s livelihood.
The medical community “knows” this. Thus when I roam the hospital corridors hither and yon I continue to be perplexed by the fact that our patients are “in the bed.” Observers of this note that the failure to get older patients out of the bed documents the deleterious effects. They speak about the negative effects of “tethering” patients to intravenous lines, cardiac monitors and urinary catheters, the fall risks we increase by the opiates and anticholinergics we prescribe and the rapidity with which this “rest’ causes motor decline.
But here widens, once again, the great chasm between knowing and doing.
One of the most important variants of American English is what is called the African American vernacular English. One of the phrases I have learned and heard spoken only by some African Americans is “in the bed.” I noticed that the phrase had a meaning or implication that whoever was “in the bed” was near death, that if a speaker of this vernacular said, “He be in the bed,” it meant that the person was very seriously ill. A medical colleague who worked in a hospital in the Deep South and served a rural community of African Americans who spoke this colloquialism told me they would almost exclusively use the phrase for fatal conditions. Vernacular speech often yields words layered with meanings. The message embedded in this phrase has always been for me, “Get them out of the bed or they are going to die soon.”
“The Doll syndrome” is how I describe the condition of many of the patients I encounter. A few days ago I encountered a patient who had an exacerbation of chronic bronchitis. She was also centripetally obese, had obstructive sleep apnea, tended to be hypo ventilator, retaining CO2 and complaining of chronic back pain. The medical/nursing approach to treating her was to keep her in the bed for seven days, on IV medications, on a cardiac monitor for which there were no indications and offer her liberal doses of PRN IV and oral narcotics.
Admittedly, it is NOT FUN to get obese patients who are “in the bed,” up on their feet, to stimulate their respiratory centers, to try to wean them off the narcotics amidst their complaints and cries of anguish while beckoning them to return to their bipedal obligation. It is much easier to treat them like a ragdoll, in the bed, virtually motionless, narcotized and stirring only to order a meal or operate the television by remote. Yet, PLEASE COLLEAGUES do your job. When I encounter these patients, I am reminded of the famous opening lines of T.S. Elliot’s poem, The Lovesong of J. Alfred Prufrock:
“Let us go then, you and I
when the evening is spread out against the sky
like a patient etherized upon a table.”
These “doll syndrome” patients are close to being “etherized upon a table.” The therapeutic window of ether is very small; a bit too much and the patient “in the bed” is dead.
Florence Nightingale. Many know her name, but not the extent of her influence on hospital medicine in the mid 19th century. Known as the “Founder of Modern Nursing” Florence Nightingale lived for 90 years, and laid the foundation of professional nursing by spreading medical knowledge, fighting for social reforms and tireless acts of service. In 1860, Nightingale established the first secular nursing school in the world at St. Thomas’ Hospital, London, now part of King’s College. In recognition of her achievements and impact on the profession, The Nightingale Pledge is recited by new nurses and The Florence Nightingale Medal is presented as the highest international distinction a nurse can achieve. International Nurses Day is celebrated throughout the world on her birthday, May 12th.
April 19, 2017 “(Homer 9.90-101). “…the Lotus-eaters did not plan death for my comrades, but gave them of the lotus to taste/and whosoever of them ate of the honey-sweet fruit of the lotus,  had no longer any wish to bring back word or to return, but there they were fain to abide among the Lotus-eaters, feeding on the lotus, and forgetful of their homeward way. These men, therefore, I brought back perforce to the ships, weeping, and dragged them beneath the benches and bound them fast in the hollow ships;  and I bade the rest of my trusty comrades to embark with speed on the swift ships, lest perchance anyone should eat of the lotus and forget his homeward way.”
Appearing lately, albeit sotto voce, in the mainstream media, known more for superficial echoes of politicos and self-appointed pundits, are some alarming truths about declining life expectancy in the United States as well as a frightful and meteoric rise in opiate deaths, suicides and mortality related to alcohol abuse, chiefly among whites.
A decline in life expectancy like the one we are seeing among whites has never been seen before. Deaths related to opiate and alcohol abuse have never been higher in recorded history.
The pathology related to substance abuse has a prodrome and a trail of morbidity prior to mortality which has altered and is changing the diseases we treat in our hospitals. Recently I arrived at one of our hospitals in the early morning to pick up the patients of one of the physicians going off for a break. My list of patients numbered sixteen. The sickest was a fifty-four year old male dying of polysubstance abuse leading to sepsis, hepatitis C complicating shock, liver and respiratory failure. His clinical state was that of a cachectic and chronically encephalopathic man on death’s doorstep. A patient in the step-down unit nearby was a 41 year old female with staphylococcal septicemia, caused by intravenous heroin use, accompanied by septic bursitis of the hip, septic arthritis of the knee and pneumonia. Two doors down was a man in his mid-forties admitted for vague chest pain whose real pathology was ethanol withdrawal. On a regular medical floor was a thirty year old woman who had developed an arm abscess from IV heroin use. Later in the day I was asked to do a medical consultation for a woman on the psychiatry service who had been taking oral opiates for years for “chronic pain” who had taken an overdose of ethanol and her opiates.
That morning, one of three or four of my patients was suffering from conditions related to substance abuse! In my patient experience, this prevalence is becoming the norm. Three of the four who had opiate habituations were being treated in the hospital with opiates, in spite of the fact that the drugs were foundational to the problems that had caused them to be so ill.
Substance abuse, particularly opioid, and its associated pathologies and rampant proportions, would appear to deserve a very high priority within the hospital with established protocols, treatment modalities and embedded structures for its recognition and treatment. This appears to be especially true given that it is part of an epidemic of death that is lowering the life expectancy of a large “demographic” of this country. Treatment strategies and protocols for other medical problems are certainly in place within hospitals. We are, after all, forced via our EHR systems to ponder anticoagulant prevention of deep venous thrombosis. We are asked electronically to identify and provide appropriate treatment for possible myocardial infarctions, stroke, transient ischemic attack, atrial fibrillation, pneumonia/COPD and adult vaccination.
Yet the substance abusers cycle through our system repeatedly as though their presence or absence was akin to a change of the weather and their treatment often includes supplying them with the poison that is already killing them. We have no protocols for treating them acutely, no discharge protocols that steer them toward outpatient treatment. Their peccant pathology is something we avoid. In fact, to me these patients seem to be the abandoned and the shunned. We try to avoid the correct diagnosis of opioid addiction by adding euphemisms such as “chronic pain” to patient problem lists. Otherwise, we fear, our terms for addiction might be pejorative. We self-censor due to our own moral misgivings. We would rather not recognize addiction as a disease because we harbor moral misgivings about the condition. We then leave these patients on drugs that are amnesic and suicidal. Almost by definition these patients are cognitively disabled. They cannot create a constituency demanding addiction treatment. They form a constituency of “drug seekers.”
And we admit people who are opioid dependent for other conditions and, even when their opiate intake threatens their health we simply continue or escalate their opiates. How can a morbidly obese person with pneumonia and hypoventilation in respiratory failure benefit from opiates that will further depress the respiratory function and drive?
Beyond anecdote are the numbers of people known to die from prescription opiates or street heroine. In 2015 someone in Ohio died of an opioid overdose every two hours and fifty-two minutes. In 2014 Ohio had 2,106 deaths due to opioid overdose, exceeding the number for California, a vastly larger state in terms of population. 2015 saw a huge increase in the number of Ohio opiate deaths when it shot up to 3,050. On average that is 8 deaths per day. The grim tally for 2016 promises to be higher but apparently is not yet official. Regarding Cleveland and environs, Cuyahoga County suffered 500 opiate overdose deaths in 2016. Roughly two thirds of these people were male and ninety percent were white and the largest cohort was in the age group between thirty and sixty.
Nearly all investigators of this epidemic agree that it began and was fueled principally by physicians inappropriately prescribing opiate medications.
These are the death statistics. Numbers of substance abusers visiting emergency facilities and medical clinics seeking drugs, numbers visiting clinics and hospitals for treatment of substance abuse and numbers seeking treatment for overdose, associated infections or associated injury are harder or at times impossible to accurately define.
If, month in and month out, a person in Ohio died every two to three hours of a communicable disease—influenza or streptococcal rheumatic fever, the public outcry would not be hushed.
I will argue that, although much is already being done on a state level to address this, little to nothing is happening within hospitals or systems of hospitals. Addiction is a well-studied disease. Why have we no addiction specialists to consult?
Every change needs a starting point. We need to correct our thinking. We need to stop assessing pain as a vital sign. It is not. Pain as a vital sign is a charade, a fantasy and anti-science. At the emergency department level we need to stop using opiates, particularly for opiate dependent people and reserve the drugs for acute or malignant pain according to rigid guidelines. On the medical floors we need to disabuse ourselves. Patients will not die from heroin withdrawal except in rare instances and do not require suboxone or morphine or other opiates. They may require intravenous fluid support and benefit from antiemetics or other non-opiate and non-benzodiazepine medication, but they do not benefit from our preservation of and enablement of their addictions. Suboxone and methadone should be administered by teams of addiction specialists.
We must see the error of our ways. Patients who chronically ingest opiates for “chronic abdominal pain” and “chronic idiopathic gastroparesis” have opiate gut syndromes, a fact pointed out over a hundred years ago, fashionably now ignored. Patients who allegedly have “chronic pancreatitis” overwhelmingly do not have any radiological or biochemical evidence of pancreatic inflammation and they should not be treated with opiates. They usually present to the hospital when they have exhausted an outpatient supply of opiates. I find them on our wards, absent any physical or laboratory evidence of hypovolemia in spite of their claims of intractable vomiting. There are innumerable other patient improvisational theatrics that lead to unnecessary opiate administration; I will not dwell on fibromyalgia, migraine or low back pain, syndromes that demand alternative therapies to opiates. And we must stop blithely dolling out opiates to hospitalized patients simply because they take them as outpatients.
We must reeducate ourselves. Nursing, physicians, hospitals and the pharmaceutical industry, the “we” that have control, must come back to an ancient recognition that opiates have an indication, acutely and chronically, for only a very small number of clinical situations.
We must disabuse ourselves. No “patient satisfaction” evaluation should be requested of any patient regarding their pain management until our epidemic of opioid deaths has been ended. No incentive should ever be given to an emergency department clinician to provide opiate management that is dubious. Chronic opiate ingestion, not one to ten pain scores, should be flags and markers on patient charts indicating a potential life-threatening pathology. If we are to count the cigarettes a patient smokes, let us count the milligrams of opiates they eat.
Our hospitals have become Islands of the Lotus eaters. Look into any chart and it seems no matter what the condition treated, there is an opiate medication ordered.
We must do for our patients what Odysseus did for his men. Their ship landed on the island of the lotus eaters and his men ate the plant they were offered. They were drugged and forgot their duties, forgot their longing for home and refused to leave. He dragged them back to their ship, binding them beneath their rowing benches and renewed their journey homeward.
In 2014 Ohio won the shameful honor as “ground zero” in the Opioid Epidemic. In that year 2,106 deaths occurred in Ohio due to opioid overdose (Cleveland.com November 30, 2016), more than any other state in the US. California, a state with more than 3x the population of Ohio, came in second.
I often ask young doctors, “What is your most uncomfortable conversation with your patients?” The most common answer I receive is not relaying prognosis or abnormal test results. Overwhelmingly, the most uncomfortable conversations with patients are with those who are seeking opiates. I often ponder regarding individual solutions. But before solutions, we must identify sources. Without avoiding advice on individual physician responses to patients demanding opiates let me first consider how we, institutionally and socially, find ourselves in these uncomfortable conversations.
As a start, the fact that there is an opiate overdose/abuse epidemic still seems to be a dead elephant in the living room for most emergency department personnel and what they do to patients in many ways sets the stage or scenario in which we later find the patient. When I speak to ED physicians about the issue they appear to be aware of it but I cannot see that it changes their practices. Thus the number of patients administered hydromorphone in the ED, usually given IV (which produces a euphoria akin to heroin), for questionable complaints of pain does not appear to be diminishing. The patients then arrive on the floor primed with the expectation that this euphoric state will be maintained by the staff on the floor. Most ED practitioners appear to have forgotten that all the drugs that we give for pain can be given subcutaneously and that there are modalities to address pain other than opiates. Many ED physicians are afraid that their masters at the corporate level will penalize them for any patient complaints should they refuse the patients who “know” they must have opiates like Dilaudid (often with a little Phenergan on the side). This scenario, in which a person with chronic pain or pain far out of proportion to clinical, radiographic or laboratory findings is treated with potent intravenous narcosis, is the one which most frustrates me. To me it is one of the ways we initiate or enable addiction.
We could perhaps make history by being the first hospitalists to campaign to convene a mandatory meeting, followed by periodic mandatory meetings, of all hospitalists, all ED practitioners, pharmacy staff, nursing leaders and administrators to review narcotic usage in the hospital, both on the floors and in the ED, with review of any events such as respiratory depression or delirium induced by opiates. The expressed purpose of such meetings could be “Intervention into the Opiate Crisis; “(Hospital’s) Role in Preventing and Addressing Opiate Abuse.” The burning issue behind this demand would be the fact that thus far in 2017 a person in Cuyahoga County dies every other day from an opiate overdose.
As you may have discovered already, medical practitioners across the country are involved in similar institutional efforts. If you google “reducing narcotic use in the emergency department” you will find a bounty of guidelines and articles describing successful efforts at all sorts of levels to help practitioners kick the habit of opiate prescription (pun intended.) I like “An ER Kicks the Habit of Opioids for Pain,” found in the New York Times, 10 June 2016, which describes how a New Jersey Hospital Emergency Department cut their opiate use by 38%. Harm reduction strategies are easy to find, constructed by institutions or various medical societies.
Harm reduction on the street is perhaps a way of framing your discussion of opiate intake with a person who clearly is seeking opiates that are inappropriate in their treatment. At times, because the opiate epidemic is so potentially fatal, I go straight to questioning patients about what is the greatest threat to their lives, the intravenous use of street drugs, and simply ask them if they do that. If the answer is affirmative, I then try to give them the lecture about how to reduce risk of death from overdose and complications of infection. At SHM and other websites you can find detailed discussions about how iv drug abusers “cook” and administer their drugs and how to advise them to do so in the least harmful way, including procurement of clean needles and Narcan. Most physicians do not know how iv drug abusers go about preparing their drugs for iv injection and an understanding of this is informative in comprehending the infectious complications we encounter as well as in advising addicts on how to avoid death and infection.
The issue of how to deal with the patient seeking inappropriate narcotics rapidly balloons outward from our need to protect the individual patient to the necessity of addressing and influencing a national medical epidemic of preventable death.
For Christmas I received a copy of The Quotable Osler, (Silverman, Murray, Bryan, ed., American College of Physicians, 2008), a collection of short statements and observations drawn from the writings of Sir William Osler. Osler has been a voice in my head throughout my career and I found myself “listening” once again to his words of wisdom.
Most of the medical residents and students I encounter have no notion of who Osler was. This is a pity; it bespeaks an ignorance of the career of a man who shaped the way we work to this day. He wrote the first comprehensive textbook of Internal Medicine. He transformed the way we are educated. He wrote extensively on what the ideal physician should be and how he should behave. (I use the male gender pronoun here, as this was a time when physicians were overwhelmingly male.) His shadow was so long that, decades after his death he was quoted constantly. In fact, so many of his alleged “aphorisms” were falsely attributed to him that a book like The Quotable Osler is a scholarly documentation of statements that can be truly proven to have come from his pen. He was a man of humor, humility and wit; he was also deeply reflective on behaviors and the pitfalls of physicians. His chief devotion was to medical students and teaching at the bedside.
My father-in-law taught at Johns Hopkins Medical School years after Osler was among the founding giants. He spoke of Osler as the symbol of a group of people, a large cadre of physician educators who effected changes in medical education and practice in the 1890’s through the first quarter of the 20th Century. Most of their names have fallen into oblivion but Osler’s remains. If he was exemplary of a class of new clinicians, it is perhaps because he is best remembered by the massive content of written advice he left to us. I would argue that especially now, as medical practice for so many reasons appears to become more complicated by the minute, his words are worthy of reconsideration.
It can also be argued that his professional life must be placed in the context of the era. The time of his life was one of expansive change in medical and biological knowledge and medical technology. At the time of his birth (1849) there was literally no knowledge of the bacterial and viral etiologies of illness. By the time he was in his prime the exact bacterial pathogens as causative agents of many diseases had been identified and typed and bacteriology and virology laboratories flourished. Within his lifetime microscopic histology and pathology were born and flourished as sciences, physiology as a discipline shed ever more light on organ function. Surgery at his birth was brutal and primitive; by the time he was a distinguished professor, safe surgical interventions into every body cavity but that of the skull were being performed. The x-ray began to offer its internal images. During his lifetime massive changes in public heath infrastructure, spurred by expanding understanding of mechanisms of infection transmission, were taking place across Europe and North America.
Within that context, the physician himself was rapidly changing, from something not much better than a bumbling observer to a potentially accurate diagnostician and interventionist. The role and the methodology of the physician were changing and Osler offered through his lectures and papers a paradigm of what that new doctor should be. Much of what he advised his students was related to communicating with patients: “Listen to the patient, he is telling you the diagnosis.” (p. 98)
Osler began his days as an educator by rounding with his students at the bedside. He would expect a student to give a history “in the patient’s own words” and he would verify the history with the patient. He advocated calm silence in hearing the patient and then careful observation and physical examination.
He reminded his students that while they were examining patients, the patients were evaluating them: “Remember, however, that every patient upon whom you wait will examine you critically and form an estimate of you by the way in which you conduct yourself the bedside.” (p.103)
He advocated using clear, plain language in communicating with patients:
“And from the standpoint of medicine as an art for the prevention and cure of disease, the man who translates the hieroglyphics of science into the plain language of healing is certainly the more useful.” (p.58)
He also urged his students to treat persons as individuals, not disease states: “There is a tendency among young men about hospitals to study the cases, not the patients, and in the interest they take in the disease, lose sight of the individual. Strive against this.” (p. 102)
In four relatively short sentences, Osler sums up the essence of good patient communication: 1) Listen; 2) Be aware that a doctor’s behavior in the patient interview is a means by which the patients judge the doctor; 3) Use simple, plain language in explanations; and most important 4) Approach the ill patient as an individual with problems, not a disease state.
Dr. Osler was an advocate for an empathetic approach to each patient: “The motto of each of you as you undertake the examination and treatment of a case should be ‘put yourself in his place.’ Realize, so far as you can, the mental state of the patient, enter into his feelings…Scan gently his faults …the kindly word, the cheerful greeting, the sympathetic look.” (p. 46)
Of all the pieces of advice in The Quotable Osler, one paragraph has captivated my thought. In a world in which time seems compressed and we are sometimes crippled by malignant memories of the past and fears for a catastrophic future, Osler advises us to disregard anything but the present, to focus on the day’s work, to live “earnestly and intently:”
“The load of tomorrow, added to that of yesterday, carried today makes the strongest falter. Shut off the future as tightly as the past. No dreams, no visions, no delicious fantasies, no castles in the air, with which, as the old song so truly says,‘hearts are broken, heads are turned.’ To youth, we are told, belongs the future, but the wretched tomorrow that so plagues some of us has no certainty, except through today. Who can tell what a day may bring forth? The future is today—there is no tomorrow! The day of a man’s salvation is now—the life of the present, of today, lived earnestly, intently, without a forward looking thought, is the only insurance for the future. Let the limit of your horizon be a twenty-four hour circle.”
Having been so admonished, keeps these words within reach, and when you awaken with a remorse for the past and fear for the future, read them again and again.
in·flu·en·zanoun inflew’enzeA highly contagious viral infection of the respiratory passages causing fever, severe aching and catarrh, and often occurring in epidemics.
We are in the middle of the influenza season. We medical practitioners dread this illness because there is nothing we can do about it. It can vary from an illness of relatively mild symptoms to a deadly syndrome, and can have terrible complications in those already infirm with other conditions. As it varies in its morbidity and mortality it varies in its clinical course.
For many hundreds of years physicians described febrile diseases by their “stadia” or stages. This works very well for certain illnesses such as yellow fever or hepatitis, which tend to unfold predictably. With influenza the course is variable according to the strain, which of course differs from year to year. Even then, there is a great discrepancy in symptom expression. In the last part of the nineteenth century and the first half of the twentieth, clinicians carefully examined and studied huge numbers of patients who presented during outbreaks of the disease, demonstrating repeatedly that depending on the strain or at certain stadia, the disease seemed to have a favorite organ system through which it would express itself. It might be neurologic, laryngeal, pulmonary, gastrointestinal, dermatologic, or myocardial. There was nearly always some form of pulmonary involvement, however.
Expert reviews of the disease written around 1900, while surely tainted with some mistaken diagnoses, are long on physical findings leading to separate classifications. Even through the great pandemic of 1918 the exact pathogen causing the illness had not been identified. Many experts felt it was bacterial, and thus the suppurative complications of the viral disease tended to be “lumped” into the case mix. Nevertheless, it is interesting to read the accounts of these physicians because, unlike today, they describe the illness through their meticulous history taking and through very thorough physical examination of patients on a day by day basis. So transient rashes, pericardial friction rubs or murmurs of papillary muscle dysfunction that come and go are noted, suggestive of far greater attention to physical findings than any of us today would claim to afford our patients. We have our radiology, lab tests and echocardiography; they had their eyes ears and hands. “Use makes master.” 1
By the latter half of the twentieth century, descriptions of the “stadia” of influenza are replaced with the more modern term, the “clinical course.” The modern description is more generalized: a sudden onset of systemic malaise and myalgia, cough and other upper respiratory symptoms, fever and chills and possibly a big bag of other symptoms. The patient is ill for about a week and almost always looks and feels much sicker than can be explained by the clinical, X-ray or laboratory findings. Most will recover with no intervention.
Hiding, lurking, in the sub consciousness of all practitioners who confront the victims of an outbreak with a modicum of knowledge, there has always been the possibility that, at times, during rare outbreaks, particularly 1918, many of those patients would be dead within a day or two. Thus, if you walk into the clinic waiting room on the first day of an epidemic and the face of every person there appears ghastly, you have no way of knowing whether this is one of those times.
There is no choice for physicians other than to carefully examine everyone. This is the way I recall the epidemic of 1977-78 when I was in training as an intern in pediatrics. The outpatient clinic rapidly filled its waiting rooms with coughing, febrile, wheezing kids who all looked limp and listless, who all had to be examined to determine the severity of the primary disease and for complications—worsening asthma, pyogenic otitis, localized pneumonia, dehydration. I was lucky that year. My mentor was a courageous and tireless young man who was fully trained in pediatrics and even though he was a very gentle soul he was heroic and marshaled all of us into the breach, as it were.
I also did not contract the illness that year. In terms of suffering myself, I do have a vague memory of probably having the illness at the age of five— I recall days of cough and febrile hallucinations, I can still see the face of the local general practitioner at my bedside, and feel his antibiotic injections, I recall his huge black bag, and days of sleep morphing into nights of paroxysmal cough. For me personally the disease then ends except as a practitioner, until last week.
If patient experience is enhanced by practitioners with empathy, my recent personal case of influenza will be a fount of empathy on my part forever. If this is a disease that can kill you, but usually does not, let me suggest that it pretends to be killing you very convincingly, to the point that at times you wish it would just get on with the job and do so.
My Personal Stadia Begins
The first stage is marked by a sort of prodromal day of the mental blues. Life seems listless, happiness a distant memory, an anhedonia sets in; there is no pleasure, no joy. I cook my favorite soup from scratch; though the taste offers no pleasure. A sore throat develops and then rhinorrhea. My mental outlook becomes blacker as night approaches. Lines from a Yeats’ poem seem apt:”I gathered all, brought all to mind/ All life ahead seemed waste of breath/A waste of breath the years behind.” 2
Rhinorrhea worsens as the time for bed approaches. In spite of the gloom of spirits the bed seems a welcome place at first. Soon it becomes a horror chamber as the second stadium is entered. Fever begins, with violent chills that cannot be soothed by pounds of blankets. Myalgia begins, with muscle stiffness after repose, and muscle pain with motion made to relieve the joints. The mind races, and when chills abate, troubled sleep does descend and furtive, rapidly changing visual dreaming follows, colorful TV screens. Then chills return with wakefulness and pain. Then as morning approaches, the minds scaffolding seems to collapse, darkness arrives, welcome unconsciousness ensues.
Daylight again. In the third stadium it is painful to breathe or swallow. There is a cough, a general pain of all the muscles from head to foot. The mental depression has been replaced by mental lethargy, complete cognitive incompetence. My cell phone is ringing but I do not answer it. What would I say? A clinical light starts to dimly shine into self-reflection. My inner, physician’s eye notes that there appears to be no respiratory distress, no high fever, but the day is half-gone. Where? An hour of coffee drinking, acetaminophen, Motrin and hot chicken broth ingestion is all I can accomplish against a profound lethargy. As I fall back to sleep, the little clinical thought mechanism of the brain contemplates influenza, check -listing symptoms, marking the painful cough, the lack of appetite; indeed the lack of any gastrointestinal symptoms. The pulse is weak and thready, in the nineties at rest, suggesting a myocardial depression. There is no shortness of breath at rest.
On awakening, it is near dusk. The third stadium persists. There is thirst to be sated, exacerbating pharyngeal pain. Rhinorrhea persists; cough is unchanged, not paroxysmal. Myalgia persists. Mental lethargy is severe and muscle weakness is general and worse than anything I can remember except for severe post-surgical blood loss. Another night follows like the first, dreadful with chills, near hallucinatory dreams, muscle pain. An old shoulder fracture seems fresh, an old right sciatica screams off and on in the right leg. The next day repeats the previous, and is spent somnolently, but each day is now a little less symptomatic. I tell myself that since it is not worse it does not matter that it is not much better, that is one of the rules for influenza. It should be at its worst quickly and then, if worsening from a baseline, or worsening after improvement, it is time for concern. This case just lingers. The mental depression lingers, the fatigue remains severe, but there is less fever, fewer chills, finally the chills are gone. The illness throws a couple of curves—some watery diarrhea, a couple of transient episodes of severe vertigo, but in general it gradually abates. After a week it seems gone except for persistent fatigue, transient cough, breathlessness with exertion and, perhaps the worst, mental exhaustion.
As a curious clinician, contemplating the disease as it is seen in others and then through intense personal experience, one is left with a huge question: What was that all about?? An epidemic virus comes along, has done so since time out of mind, initiates a disease through the nasal/respiratory portal, then becomes protean in its acute manifestations. First you are struck by depression; next the illness racks your muscles and bones. There is the expected cough and pulmonary compromise but then, well, neurologically you are a mess as well and can’t remember what to say when you answer the phone or remember what day it is. Like to have thermoregulation? Well, let’s do without that for a few days, you can be a poikilotherm and when your body temperature drops below 90 F the chills will knock you out of it. After you have eaten nothing for a few days, let’s follow that up with some watery diarrhea, maybe some vomiting.
From symptoms alone it is clear that the immune response to this illness calls up the image of multiple battlegrounds in multiple organ systems and with multiple manifestations. Some writers and researchers call the immune response to influenza a “cytokine storm” and suggest that the problem of the disease is not the virus but our immune response to it. Some suggest that immunization is not to prevent you from getting the disease, but to prevent you from killing yourself with your own immune response the next time you do.
While the above may sound like hyperbole, the protean quality of acute symptoms is also matched by the late sequelae. Late, probably autoimmune, phenomena are well documented. For a good analysis of the acute and late manifestations as they are represented by the most severe world pandemic of influenza, see The Great Influenza by John M. Barry. He is basically a historian but, regarding the deadliness of the 1918 pandemic favors the argument that it was fatal mostly to the very healthy patients in the prime of life because they were able to mount a virtually suicidal immune response which that particular strain called forth.
When encountering a patient with influenza the example of our forebears is worth following. First, this is a serious illness and, although as examiner you may be hard-pressed to find physical changes to explain the degree of physical discomfort, the patients’ complaints are not to be minimized. In fact, I suspect it is of some comfort to the patient if he or she is reassured that their physical and mental distresses are very real and very attributable to the disease and not to some weakness on their part. Especially early in the illness this recognition of the ability of the viral syndrome to inflict such discomfort helps explain the lack of efficacy of antibiotics and can help the patient to be persuaded to avoid them. This is one of the illnesses demanding frequent and thorough physical examination as the days progress. Feel the pulse, turn on the lights, peer down the pharynx, auscultate carefully. Be that GP at the bedside with the big black bag.
Finkler, “Influenza,” Twentieth Century Practice, Infectious Disease, ed. Thomas Lathrop Stedman, 1904
Yeats, “An Irish Airman Foresees His Death” Public Domain
MACBETH Act II, Scene ii Methought I heard a voice cry, “Sleep no more! Macbeth does murder sleep”—the innocent sleep, Sleep that knits up the raveled sleave of care, The death of each day’s life, sore labor’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.
In my readings I do not see Shakespeare quoted very often, which is a pity. I think not long ago quoting Shakespeare became a thing considered rather corny, which is a blow to oral history because so many of the phrases we use were invented by Shakespeare. Some of you who are younger graduates can thank Shakespeare for the phrase, “This disease is beyond my practice,” the next time you feel uncertain when asked to suture a wound or tend to a seventeen-year-old.(1)
I was reminded of Macbeth’s observation about sleep the other day when I went to round on a patient and he was in a deep sleep. It is not surprising to find a patient asleep in the day because one of the injuries we inflict on hospital patients is sleep deprivation. Sleep deprivation leads to cognitive impairment which interferes with patient communication. (It also has adverse metabolic and immunologic consequences.) I moved on from this patient, reasoning that he needed his sleep, which from the time of the ancients has been praised as “reparative” or health- inducing. Actually the ancient Greeks, I am told, wrote about certain types of sleep that were not healthful, probably making them the first to write about disturbed sleep cycles.
That we disturb our patients’ sleep is something that has been studied and addressed very fully by nurse and physician investigators and there is nothing I can say that will be new. One of the things that must be responsible for sleep disturbance are all the bleeps and rings of monitors and other devices on the nursing divisions to which nobody seems to pay any attention. How many times have you attempted to have a discussion with a patient only to be interrupted by an IV device that is ringing every two seconds and is being completely ignored? If I were sick and trying to snooze I think such an alarm would induce violent and destructive behavior on my part.
Every time I think about this, I recall a Monty Python gig in which a bunch of doctors await the delivery of a new piece of equipment to their hospital. When it arrives they descend into an ecstasy of delight as they take it out of its packing and admire how shiny and wonderful it is, singing its praises, only to be interrupted by a hospital administrator who wants to know what it does. Shocked by the inquiry one of the Pythons in surgical scrubs explains: “Why, you fool, it goes ‘BLEEP!’ “They then entertain the administrator by showing that it will bleep in the nursery, bleep in the delivery room and bleep in the surgery.
There has to be an app for this. If my cell phone can warn me that my thermostat at home needs a change, certainly an ICU nurse could carry a cell phone or similar device that would tell her that his/her patient’s O2 sat was 89 or that his systolic BP was over 190 without an alarm going off in the room. A floor nurse could get a text that the IV was malfunctioning or the infusion had finished without engaging that box that goes ‘bleep.’ Or he/she could get a text that the call button had been pushed without sounding an alarm at the nurses station that reverberates like an ‘abandon the spaceship’ warning in a sci-fi movie about aliens. Sometimes I step onto a floor so engulfed in bells going off that I wonder if a young Sigourney Weaver is going to come tearing around the corner headed for the escape pod. (I know this last metaphorical expression dates me, but you have to admit, that movie was iconic.)
I am certain someone has figured this out.
And, physicians, how many times have you written orders for vital signs not to be obtained in a stable patient who is asleep at night? And what about that uncomfortable monitoring apparatus we throw onto people who don’t have a whiff of arrhythmia? Try rolling over in bed with that box in your pocket.
The “patient experience” issues we should confront revolve not only around communication but around the environment, electronic and otherwise, immediately surrounding the patient. Safety issues must predominate, but they can be managed without interrupting the patient’s rest or sleep cycles. Google some of these issues and you will find that a lot of creative people are addressing them in novel ways. Send me a text if you find the app.
Improving patient satisfaction is a commendable pursuit and reaps many side benefits. Attention to the comfort and dignity of patients, careful listening, clear explaining and respectful responses are all laudable habits to incorporate as foundational to our daily patient interactions.
However, a darker side of this mission arises from the semantics. Patient satisfaction can easily morph as a concept into customer satisfaction, this being a tool of marketing and retail sales. Within that notion live many behaviors that are the antithesis of good medical care—the idea that the customer is always right, the psychology of manipulating customer conversations into a sale, the selling to the customer what he/she wants regardless of the customer’s true interests—these mindsets embody the bigger notion that above all, we must satisfy the people we encounter. That view approaches delusion when applied to the practice of medicine.
Once beyond the obvious principles of listening, hearing, respecting, empathizing and explaining, patient satisfaction training and the burgeoning bureaucracy that lies behind it often fades into superfice. This is because each family and patient presents with temperaments, personality disorders, positive and negative family interactions, reasonable or unreasonable expectations of the world and the medical system. It is often a huge task for the practitioner to sift through these psychodynamics and attempt to achieve what is best. Patient satisfaction conferences and discussions often omit any acknowledgement that behind most humans, a set of psychological/psychiatric realities exists that, no matter what we do, will indelibly shape the “patient experience.”
This superficiality is not surprising. Medicine as a generalist body of knowledge has become intensely fragmented by many forces and some of these forces have swept the hospital psychiatric wards. Indeed psychiatry has changed from a science of explaining human behaviors into a practice of providing pharmacology for psychiatric symptoms. The days seem long gone when a psychiatrist might tease the psychotic from the depressive, the personality disorder from the somatoform or dig into a patient’s past for the trauma that is foundational to the patient’s PTSD and advise a medical team.
Consider briefly one of the most challenging family psychological dynamics that we, as internists, encounter: the relationship of someone to the patient that is codependent. A recent case in which I was involved is illustrative.
I was rounding on a patient who had a recent below the knee amputation as part of a constellation of medical problems best named as part of his chronic “diabesity” syndrome. He was in his early fifties and constantly in company with his wife. He was mentally competent, alert and coherent. Almost all the questions I put to him were answered by his wife. Indeed, when I asked about his stools he remained silent while she described their number, consistency and appearance. When I asked him about whether he was eating she complained of the taste of the food. When I asked him if he had been out of bed she explained why he had not. She explained and defended what I suggested might be an overuse of narcotics. Review of his extensive medical record strongly suggested one thing about him as a patient. He had not taken care of his medical problems. He had suffered the consequences, the heart disease, the peripheral vascular disease, the chronic kidney disease, the obstructive sleep apnea which he refused to treat, the previous contralateral below the knee amputation from which he had never progressed to the use of a final prosthesis. He did not own these problems, his wife did.
A codependent relationship exists when one of the partners (or the entire family) devotes him or herself to compensating for the dysfunctional behavior of the other, be it his/her immaturity, lack of self-care, mental disorder or addiction. That codependent person does not act out of innate interests of him or herself. That person’s actions and, in a sense personhood, their thinking and behavior, is organized around another person and his or her behaviors and perceived needs.
In attempting to offer medical care to patients such as this one we often feel intense frustration. We enter the room, attempt to establish a relationship with the patient, but the patient becomes someone “apostrophic” in the sense that his codependent partner and the practitioner begin to speak of him as someone who is absent, a figure not there, abstract, alive in the imagination of the spouse or caregiver.
I had been warned on taking a hand-off regarding this patient that his wife was “a problem.” I was told basically that she was demanding, not happy with his care and generally unsatisfied. This is typical of the traits discovered in codependent people. Since they cannot truly own the problems of the other, which they have assumed as the defining factors of their own happiness, they are not happy when the outcome is, predictably to the impartial observer, negative. Symptoms of codependency are lack of trust, perfectionism, manipulation and low self-worth.
Hospital physicians have very brief encounters with these sorts of patients. It is futile, in my view, to expect to change the pathological relationship when it is so entrenched. Yet recognizing this relationship is essential to the practitioner because once identified it is explanatory of the usually negative feelings it generates in us. The default posture of the internist in a long term relationship with these sorts of patients is very different from the posture of the internist treating the interdependent patient for a week in the hospital. At best we can urge the patient to act in his own interests, to get out of bed, to reduce opiate consumption, to cooperate with physical therapy. We cannot challenge the codependent partner’s role. He or she is wired through personality to that role. We can listen and be non-defensive and nonjudgmental in the face of their critique of his/her medical or nursing care. Remember, it is the nurses who most often bear the brunt of these dysfunctional relationships.
One communication I have tried, gingerly, with the ever-present codependent person is to ask after their own health, their own self-care: “I notice that you have big burden in caring for him. I hope you are taking care of yourself, getting enough sleep and taking care of your own health.”
This may open the door of perception a tiny crack. I would not do so until you have visited the person several times—these people are often fragile and almost by definition depressed. “Patient Satisfaction” is a remote goal for this situation. Scratch a depression and anger might pour forth.
The study of safety within a workplace is vast and certainly not new.
I examined the surface of it some years back when I took the introductory safety and quality course of the Institute for Healthcare Improvement. I strongly recommend this course to anyone with a neophyte’s interest in the study of patient and worker safety within a hospital.
The basic principles of any workplace safety policy or program are based on the study of the types of errors humans make and the basic understanding that humans will inevitably make errors. In a work place these errors may be individual, but usually they are not—they are systemic. A work “system” can be laden with steps that encourage error or a work system can be designed to minimize error. Work systems that stymie or obstruct the worker from proceeding through the job and thus require “work arounds” are fertile ground for error (think certain EHRs). The basic principle in the study of error is that it will happen and the study and implementation of safety measures is, in a way, the constant detection of systemic risks of error and their reduction.
A culture of safety within a workplace requires that the working group be dedicated to it above interests of profit, egocentric hierarchy and any other demand such a “branding,” time-restraints or output requirements. A level playing field of communication is required and communication among workers, regardless of their place in the working hierarchy, is essential to a safety culture within the workplace.
So, if a nurse observes something unsafe but fears reprisal from an angry physician or surgeon and remains mute, the culture of that work environ is de facto not safe. Studies of safety disasters are bulging with instances in which hierarchical forces led to the maiming and death of individuals or in some cases, massive numbers of people.
Hospitalists seldom have the ability to change the culture of hospitals in which we work. I say this because while administrators may champion patient safety, their hands are often tied by a business model that may be threatened by policies that prioritize patient safety. The history of medicine is littered with the failed careers of vanguard physicians who dared to condemn the dangerous practices of their contemporaries. Consider the intense resistance against the adoption of aseptic technique and basic hand hygiene waged by surgeons in the U.S. in the last half of the nineteenth century. Oliver Wendell Holmes, Sr., the physician and poet, was pilloried by Boston surgeons because he insisted, prior to proof of microbial disease, that puerperal fever was passed from patient to patient by the obstetrician.
That having been said, individually we can do a great deal. I urge any physician to peruse the work of surgeon and medical writer, Atul Gawande, on patient safety. Early on he examined the use of checklists for workplace safety and, along with others, advocated their extension into the medical workplace.
The checklist became a tool of workplace safety when it was first adopted by the aeronautical community in the 1930’s, probably spawned by a famous aircraft disaster. Boeing developed a legendary aircraft that surpassed all the hopes of the military, but it was more complicated than anything that had been flown before. When the top brass of the military came to see it put through its paces the prototype crashed shortly after take off. Post crash analysis of the accident revealed certain things should have been done prior to take off that had not been done and the result was catastrophic. The result, a checklist of mandatory tasks to be completed by the crew prior to takeoff.
What would a hospitalist’s checklist look like?
Many have been used, particularly for team rounding, and they deal mostly with safety issues. Below is an example.
1.“Why is the patient here?” This may seem foolish, but the question often cannot be answered by nursing staff and it asks us to primarily consider whether the patient really must be in a hospital because the hospital is de facto a place that puts the patient at risk.
2. “What are we doing to the patient today? Do they need IV fluids? Do they need cardiac monitoring? What diagnostic or therapeutic procedures? What risk do these pose?”
3.”Is the patient a fall risk, have we ambulated the patient, does the patient require PT?” Patients are at risk of rapidly developing debility.
4.”What objects are indwelling and are they needed/safe?” Central lines and Foley catheters place the patient at risk.
5. “What are we doing pharmacologically? Is the patient on antibiotics and if so are these needed and appropriate?”
6.”Is DVT risk being addressed?”
7. “What are the barriers to discharge? Are there special social factors that need to be addressed?”
8. “What is the major concern of the patient?” This could be pain, hunger from being not fed, and fear of losing independence.
I encourage all hospitalists to examine these issues further. Patient satisfaction cannot be improved in the absence of a safe patient environment.
There are times in the life of hospitals when the flow of patients inward seems to suddenly diminish. At these times we physicians who are known as hospitalists may feel confused, liberated, or uncomfortable. Suddenly the census sheet tells you that there are only eleven patients awaiting your visitation instead of fifteen or eighteen. How does one change pace? Do we plow through these encounters at the usual speed, then slouch to our desks to complete our myriad electronic assignments? Or do we seize the moment and increase our bedside time?
A friend who is a seasoned hospitalist recently observed that we are no longer physicians but rather data managers. We go to the bedside, assess and make decisions, then devote the bulk of our time managing input into a clumsy data system known as an electronic health record. When our census shrinks, our default behavior might be to carry on at our usual pace, rejoicing that we will have enough time in the day to feed our electronic masters well.
By nature I am a procrastinator. I do first what I want to do and put off what I do not want to do. This is a simplistic definition. At times I do what I really do not want to do but still put off the things that I simply generally do not want to do. It is a curious foible. So I often force myself to interview first the patients who are really difficult yet still delay my charting of that encounter. Some of our character defects are very complicated.
Recently I found my census sheet rather barren, so I did what I like to do. I left behind the electronic notice on my screen telling me that I had a hundred or so items that needed signing, left behind the billing I had not done and sallied forth to the bedsides. I do not recall that I had any glaring, conscious notion that I had plenty of time, yet, once seated in a patient room I felt unburdened by an apprehension of the future of the day.
One of my first patients, under the care of a resident, was an eighty-something brought in because rather suddenly she could not walk. She felt she would fall. There was nothing else, no focal neurological complaint, no vestibular symptoms, no physical findings. Of course she had undergone the usual studies and imaging, nothing had been found. Her history suggested a sudden onset to her troubles, her gait appeared factitiously abnormal.
So we discussed her life. She had been for some years caring for a husband with advancing dementia. He now had progressed to a non-ambulatory state. Her days were consumed by his care. She had some relief from home health people, not daily, and her children pitched in to some extent, but they all had jobs and families of their own to care for. She had limited means of escape, to go out of her home, to have social interactions. Her husband’s disease had progressed to a point where she had trouble recognizing him. His personality had altered. She could no longer see in him the bright, Case educated engineer he had been. He made it clear he no longer wanted to live. She felt she could not leave him alone.
“I got out of bed the other day and just couldn’t walk,” was her complaint. Having the time to hear her well, it was a small leap of psychological interpretation to hear what she was really saying, that she could no longer function in the mode in which the disease of her husband had placed her. The oppression of his disease had become unbearable. She came to the hospital because she was seeking a haven.
Some diseases can be oppressors as tyrannical as slave masters. Their tyranny oppresses not only the patient but his family. The elderly spouse of the chronically and slowly dying dementia patient who becomes in her frailty a nurse; the single mother of the child with cancer, who loses her job to care for her and slips into the abyss of poverty and homelessness; there are few havens for these oppressed.
Our curious insurance systems offer scant havens from this oppression. They focus our resources on acute illness and compensate for procedures performed upon individuals. For the community of persons surrounding the ill and plagued by those illnesses there is little if any nurture or even recognition. If you are ninety and suffer from mild dementia and terminal aortic valve stenosis the system will pay many thousands to replace the diseased valve. If the dementia progresses your are out of luck and your care must be conjured from private savings, the sacrifices of family or the kindness of others.
The patient of whom I speak was thankful to me for listening, and told me she was thankful for the time I took to hear her out. I had been empathetic, and empathy is an important healing agent, I have no doubt.
What of empathy? Whither does it go? An empathetic environment no doubt helps to heal, but what is it when not attached to some action? Does it manifest itself in better patient satisfaction scores or should it rather ignite in us demands for change? From the empathy we are supposed to experience, urged by the corporate medical world, should not that empathy direct us to challenge the system that offers such scant haven for the oppressed?
Hospitalists’ patients with complex life-limiting illnesses can be grouped broadly into three major populations. There are those with:
terminal progressive illness, like metastatic cancers, likely to be fatal in a shorter term even with the appropriate use of advanced therapies;
chronic illness, like end-stage renal disease from diabetes and hypertension, likely to be fatal over a longer period of time with well managed outpatient and occasional inpatient medical care;
and, acute illness, like myocardial infarction or pulmonary embolism, that have quantifiable 6 month or 1 year mortality rates.1
It is important for hospitalists and their teams to recognize these populations as those that can most benefit from having their goals of care discussed and used to formulate treatment plans that best allow them to achieve their desired outcomes. Personalized, goal-directed therapies benefit patients, families, care teams, hospital systems, ACOs, and, more broadly, third-party payers like Medicare.
While many patients and families surveyed about encounters for life-limiting illnesses express preferences in care, some studies have shown less than 50% of medical records containing advance directives, and between 65-76% of physicians who were unaware that their patients had advance directives.2 Similarly, up to a quarter of patients with pain or dyspnea reported ineffective treatment. Up to a quarter of those surveyed also reported problems with physician communication. These types of disparities can lead to patient and/or family dissatisfaction with care received, sometimes reporting a greater than 10% difference in key “always” metrics associated with respect and comfort.3,4
There is an obvious need for more attention to the goals of patients and families with life-limiting, serious, or complex illness in directing therapies toward outcomes in line with their values and expectations. In an era when medical care reimbursement is being tied to outcomes like reduced readmissions, satisfaction with medical care and acute episode communication, and relatively narrow definitions of value, there is a timely and corresponding financial case to be made for that same attention. Now is the time to recognize that hospitalists are at a pivot point in providing the care that patients and families desire in a cost-effective way, of being conscientious and caring stewards of both personal values and system value.
As part of the Martin Healthcare Group’s efforts to promote and encourage values driving value, watch for training opportunities coming to each of our partner locations. I hope to see each of you soon, to give you useful tools and increased professional confidence to care for our most vulnerable populations during admission for serious, complex, and/or life-limiting illnesses.
Anderson, W. G., Kools, S., & Lyndon, A. (2012). Dancing Around Death: Hospitalist-Patient Communication About Serious Illness. Qualitative Health Research,23(1), 3-13. doi:10.1177/1049732312461728
Ohioans need to be more aware of the steady rise in cases of Lyme Disease due to the increase of deer or “blacklegged tick” The blacklegged tick was not even a threat in Ohio 10 years ago. However, in 2014 there were 146 cases reported to the OHIO DEPT of HEALTH. Take precautions when hiking in the woods. For more info, see
Seeing is believing! Awaiting FDA approval, a bionic eyeball gives hope to those with retinal disease and geriatric macular degeneration. A high-tech implanted eyeball receives messages from a pair of glasses equipped with a tiny camera, worn by the patient. While not restoring vision, the inventors hope to provide enough sight “so a patient can walk down a familiar street without a cane or a guide dog.” For more on this, see http://www.rd.com/health/wellness/10-health-inventions-that-will-improve-your-life/