To look upon medicine with a literary eye is something of a burden. If you have studied poetry, fiction and drama, no matter how much you have forgotten, you find yourself on the wards at times with literary phrases popping into your head that you cannot erase or make silent. Regarding sitting with a dying patient, “They also serve who only stand and wait,” from a poem by John Milton pops into mind. Recently, after a grueling day of caring for patients who almost to a person had fatal pathology, the phrase “in dubious battle” came to mind, and the often oxymoronic culture of “health” care as it “brands” itself in America vexed me.
In Dubious Battle is a novel by John Steinbeck. Steinbeck purloined the title from a phrase in Paradise Lost, the epic poem regarding the biblical fall of man by John Milton.
Paradise Lost is considered by many scholars to be the great epic poem of the modern English Language. The character of Satan plays a major role, of course, he being the character who will trick Adam and Eve into being ejected from the Garden. “In dubious battle” is a phrase used by Satan to describe the conflict that he and his band of fallen angels have lost in their conflict with God “in dubious battle on the plains of heaven.” The mythology is that Satan and co-conspirators in heaven, hating God and detesting his omnipotence, organize an armed uprising, lose and are thrown out of heaven by God.
In the poem, Milton employs oxymorons, a linkage of two ideas or words that are self-contradictory, such as “brilliant darkness.” The use of the adjective “dubious” by Satan is a nod to the oxymoron, because the entire notion of winning a fight with God is oxymoronic—you cannot win a fight against an omnipotent opponent.
Who cannot, having walked the wards for decades, find the notion, implicit in what we do, of “curing” certain patients, or “rehabilitating” certain patients, as oxymoronic compared to the actual data we must point and click and type into the electronic medical records to describe our patients’ conditions.
We cannot promise health to those whose journey has already taken them beyond its prospect. The obesity epidemic seems to be swelling like a wave, crashing upon those of us who work in the medical field. The changes of American culture, which I will call pathogenic, have brought us an opioid epidemic and an epidemic of obesity and they are causing our life expectancy to fall. They germinated during the youth of the baby boomers, coming to full fruition through their lifetimes. Now these massively obese souls have stumbled into the ranks of the aged and their multiple pathologies and physical impairments tethered to the expected impairments of aging itself kindle storms of acute disease.
I start a morning staring at the chart of a woman with a body mass index of 51. She presents with not one, but several potentially fatal events: her arm is infected; she has acute influenza and an acute exacerbation of her COPD with marked hypoxia. The patient’s age is seventy-something. She has had coronary stenting, lived for years with the metabolic syndrome of diabetes, hypertension and hyperlipidemia; she has had breast cancer bilaterally with infectious complications due to lymphedema, cellulitis and secondary bone infection of the spine, requiring months of intravenous antibiotics. She has suffered from diastolic heart failure and atrial fibrillation as well as chronic obstructive pulmonary disease; and she has chronic kidney disease.
This poor person is in dubious battle. We know she cannot win and we know that probably many medical adventures await her—those coronary arteries will get gummed up, the kidneys will fail completely and she will need dialysis. Chart review shows that she has been in and out of the hospital frequently over the past couple of years and the gravity of her morbidities appears on an upward curve.
Her aggressive consultants, her family informs me, are contemplating a biopsy of her vertebrae to make sure her bone infection is “under control.” I am fearful that procedure will not go well.
We are not caring for her health but attempting to react therapeutically to her multiple predictable disease states and the pathologies that are not random but rather the complications of a physiological illness for which we have little to offer. Severe obesity, mixed with aging, is a poisonous cocktail.
I have argued that one of our cardinal failures as physicians is to not honestly give a prognosis. There is a delicate dance in communicating with patients who have multiple smoldering and flaring morbidities and who have a very high likelihood of suffering severe complications and organ failures. On the one hand, it is not fair for us to maintain a pretense that patients such as the one whose clinical picture I sketched are going to be “cured.” On the other is the fact that professionally she deserves our empathy and in our communications, verbal and non-verbal, we must attempt to be of benefit. This is, of course, our duty to all patients but we must not forget it in our care of the severely obese or the addicted.
Taking a history from this patient was laborious and somewhat emotional. She was assisted by her daughter (whose level of involvement in her mother’s medical picture was revealed when she showed me her mother’s X-ray images on her cell phone.) I find it helpful, when trying to establish a relationship with a patient such as this one, to listen carefully to the story of her medical adventures and then acknowledge that she has had some really difficult encounters with disease over the past several years. “It sounds as though you have had a really tough time over the past years with these medical problems.” And then, of course, you have to listen to the response, which might give you a handle on what the patient and family have in terms of expectations. One can further connect by inviting the patient/family to explain the situation in the context of exactly how she and the family are coping with it—how and where she lives, who helps her, her functional abilities and disabilities. Being open to this information allows you to “go where the patient lives.” Doing so makes further conversations (about CPR or other intensive measures if they need be discussed) more contextualized within a relationship you have established.
In explaining what the medical care will be for this person’s acute problems a physician does not need to offer a general prognosis for anything but the acute problems. Should the medical situation deteriorate, giving as accurate a prognosis as possible may become necessary. In order to make that easier, establishing a relationship is a crucial step in patient communication.
Listen. Acknowledge. Listen more. Empathize. If we cast a cold eye on the numbers and ages of people with obesity in America, it is certain that our dubious battle has not yet reached its crescendo.
By 2020 it is estimated that 75% of Americans will be overweight or obese.
Some years ago when I practiced in a rural hospital I was asked to admit a man who had sustained fractures to both knees. I balked because I knew that the only orthopedic surgeon at the hospital was out of town and the man needed surgery on both knees. Aside from the fractures, he had no medical issues preventing surgery. Conventional medical wisdom teaches that the faster this sort of injury is fixed, the better the outcome for the patient. The hospital administrators pressured me to keep the patient “for a few days” until the orthopedic surgeon returned. Their incentive was clear. They wanted to capture the operative/financial billing. My incentive was to get the patient the care he required. Discussions that ensued between the administrators and me were not pretty.
At times financial and outcomes metrics push in an opposite directions.
I recently came across an interesting article of investigative journalism by Pulitzer Prize writer David Phillips in the New York Times. Phillips describes the complaints of physicians at a small VA hospital in rural Roseburg Oregon. They claim that the hospital administrators frequently denied care to patients who were very ill, sending them home or off to other facilities, in order to make their overall medical care outcomes look better. If the patients were not admitted, they were off the radar in terms of data analysis. Any negative outcome of their illness would occur at home or at another hospital.
He describes a set of ‘metrics’ used throughout the VA system to grade hospitals and their associated clinics. Patients who are very sick and die lower the grade as well as anyone requiring admission for congestive heart failure (the diagnosis implies poor system outpatient management). Also bringing down the score are patients readmitted within thirty days, hospital acquired infections and so forth. Phillips reports that there are about one hundred of these metrics that are used to grade facilities.
Curiously, Phillips finds, since the metrics grading system was implemented across the VA system, many facilities have improved their scores. He interviews doctors who claim this has happened not because of improved medical care but due to the fact that administrators game the numbers by avoiding the treatment of patients who might have poor outcomes. About half of the beds at the Roseburg VA, he reports, remain empty.
The community of Roseburg is rural and poor. The unemployment rate is high. The Roseburg VA Health System, he states, is understaffed and he reports that many of their primary care physician positions are empty, making ongoing care of patients in the system problematic. The hospital itself has no intensive care unit. But Phillips interviewed emergency and hospital physicians there who claim they are forced by administrators to turn patients away who could be cared for there in order to play the metrics game. They claim that the administrators want to keep patients with poor prognoses “off the books.” He describes a cachectic veteran in his eighties who presented with dehydration, falls and fractured ribs whom the doctors wanted to admit. The administrators refused and sent him home.
Given the fact that the community is rural and poor one would expect the disease burden of the veteran population in Roseburg to be high. So, given the poor staffing, the population, the location, and the demographics, why would distant administrators impose what sound like unattainable metrics on a group of health care workers struggling to provide veterans with care?
And, if you were the local administrator and the administrators above you would reward you if your scores improved and punish you if they did not, would you not manipulate everything you could to make your performance look better? Phillips reveals that administrator’s bonuses go upward with better scores.
This issue of avoidance of ill persons by medical professionals is not at all new.
The problem with evaluations at play in systems such as this is the failure of leadership (administrators) to embrace the reality of the workplace. From what Phillips reports, Roseburg’s VA facility’s principal and overarching problem is lack of staffing. Until administrators attend to that it is hard to imagine the value of imposing grading systems on teams of workers which are skeletal.
It would appear that the grading system under which it struggles represents an administrative failure. Expecting excellent medical outcomes in attempting to appropriately treat aging, rural veterans with multiple morbidities is a fool’s errand which fails the patients. The doctors think it is actually diminishing the quality of their care by administrators who do not want physicians to care for them in the hospital at all. The doctors he interviewed seemed to be saying, “Let us do our jobs and do what we can for these fragile and sick people without sending them many miles away from their families. Some of them might die because some of them have fatal illnesses, but metrics should not be part of the decision to care for them here or transfer them out.”
In my experience I have found that physicians generally, in keeping a patient at their facility or seeking a transfer to a higher level of care, do so with the best interest of the patient in mind. The questions involved include whether the patient would benefit from care not available at his/her present facility, and whether the patient wishes to experience that higher level of care. Hospital administrators can push and pull that decision in both directions depending upon their incentives. I would argue that the decision should be medical.
Administrators, in most of these decisions, lack the license, the agency and the ultimate responsibility for these decisions.
One often hears or participates in a political discussion about a problem we suffer in the United States which appears to have been improved or solved in another nation. One side proposes that we adopt what country X has done to solve our problem. The other side often counters with what is really not an argument but a non sequitur stating, “We are not country X.” While true that we are not country X, the fact that we are not is an invalid argument within debate. Embodied in that statement however, is the notion that: a) we are unique and special, b) we are incapable or politically incompetent to confront the issue, or c) the problem is highly damaging to most of us but is producing great sums of money for a few individuals, and well… “We are not country X.”
I point this out as preface to a discussion of the success of the relatively poor country of Portugal in addressing its opiate abuse epidemic. Their results in dealing with their own epidemic of opiate-related deaths has been only superficially exposed and virtually ignored by our corporate media. Yet from Portugal’s example we might learn striking and relatively simple lessons to put a halt to our opiate-related epidemic of death, and curb the associated medical pathology and social pathology.
During the 1990’s Portugal saw a rapid increase of opiate addiction and opiate-related deaths, mostly from intravenous heroin use, along with a striking increase in HIV and hepatitis transmission related to the same. Their death rate climbed to twice the rate for European countries in general. I have read estimates that one percent of their population suffered from addiction, perhaps more. From accounts, their problems with opiate addiction were almost a prelude or foreshadowing of what we are experiencing today in the United States.
In 2001 Portugal responded to their epidemic by decriminalizing the possession of relatively small amounts of illegal drugs. It has been reported that they consider possession of approximately ten days’ worth of drugs for a person to be a non-criminal offense, but they did not legalize the possession. Possession of the small amounts of certain drugs remained an administrative offense and manufacturing or selling illegal drugs and trafficking remained criminal offenses.
The majority of addicts were thus removed from the criminal system of courts and prison sentences and therefore the society at large was spared these costs. Persons found to have small amounts of illegal drugs were referred to administrative committees for evaluation. These committees consisted of a representative of social services, a person from the legal system and a physician. The committee retained punitive measures it could bring to bear against these persons, but these did not include prison sentences. The committee is tasked with assessing the person and suggesting a treatment modality. If the person does not comply, he/she could suffer various penalties such as forfeiture of licenses related to work.
At the same time Portugal established a free system of treatment centers, some public and some private, that promoted harm reduction, some social services and conversion to medical replacement therapy. They included inpatient services but the bulk of their treatment facilities were for outpatients.
Their success in reducing drug-related death rates over a few years was stunning. Portugal joined the three lowest death rate countries in Europe. Rates of HIV and hepatitis transmission also declined dramatically. The rates of opiate and other drug addictions do not appear to have changed, but this part of the epidemiology is difficult to assess due to the fact that their policy changes made it much easier to count the number of addicts out there once many of them were offered free treatment.
I am not able to comment on the financial costs of this change of policy in Portugal. There was a savings, no doubt, from not having to support the cost of the courts and incarceration which we continue to sustain in this country. There was a cost to establish medical facilities for treatment. Were we to emulate Portugal I suspect we might actually see a net savings, given that within our prison-industrial complex we are currently spending tens of thousands of dollars a year to incarcerate addicts. It would be difficult to quantify the dollars saved by decreasing the social costs of our addiction epidemic—the costs of social services for the foster care of children with addicted parents, the medical costs of the complications of intravenous drug abuse, the EMS costs of dealing with overdoses and so forth. Political push-back would, no doubt, be strong from the for-profit prison corporations in the United States and assuredly from other entities that directly or indirectly profit from the status quo.
What the Portuguese did was to take the problem out of the system of criminal justice and to treat it as a medical and social problem. There are many reports of entities such as local criminal courts attempting basically the same thing in the United States but clearly we need to change on a national level. For years now our “war on drugs” has failed and criminalization of addiction has failed. Both have cost us phenomenal amounts in terms of social disruption and pathology, to say nothing of the fortunes sunk in failing policies and policing. The profits related to these policies have gone to pharmaceutical giants, the private prison-industrial corporations and to cartels of traffickers in illegal substances.
Portugal, a much less wealthy nation than our own, has created solutions which we, with much more in the way of fortune and resources, should emulate. The morgues here are bulging. Death rates continue to rise. “We are not Portugal” is an insufficient statement regarding our inertial present posture.
As Director of Patient Experience in our group of physicians, my job is to promote better patient communication. However, it increasingly appears to me that physician to physician communication is generally deteriorating and in need of remediation as well. Perhaps as my years advance I am forgetting that poor communication has always existed. Please help me out: are a lot of medical people speaking gibberish today, or is it just my imagination? As a group of hospitalists, we care for patients in the hospital. We admit patients into hospital beds principally after they have been evaluated and treated in the emergency department of our hospitals, but we also receive them from other emergency medical facilities, clinics and doctors’ offices.
Historically when these transfers occur it is convention that the referring physician verbally “presents” the patient case to the accepting physician. This allows the accepting physician to establish the seriousness of the illness, to be sure that the hospital where we practice has the capacity to care for the patient’s illness and to establish what kind of medical floor the patient will re-quire(intensive care, regular medical floor, monitored bed) and so forth.
And, time out of mind, this presentation of the case by the referring physician has been an important expression of the craftsmanship of the referring doctor. What he or she says proves that she knows why the patient has been brought to a doctor, who the patient is in terms of age, chronic and past medical problems, what the patient exhibits on physician examination, and what, if any, laboratory studies and imaging studies show. This usually includes a description of what treatment has been rendered.
Just last week I received a call from a physician at a clinical location outside the hospital, to accept a transfer to our hospital of a man this physician was evaluating. The physician was clearly a native English speaker but after several minutes of listening to him I had no notion of who the patient was or why he was being transferred to me. I knew I was in trouble when the referring physician began with an introduction, “Well, I have a guy here who, I don’t know, had a fever and, well, maybe there is a pneumonia….his white count is 24 thousand…He played eighteen rounds of golf yesterday and then felt bad…”
This frustrating, unorganized “hand-off” conversation degenerated into a sort of game of twenty questions. I had to ask the patient’s age, race, current medical problems and whether he was diabetic (the physician did not know). The physician gave me the laboratory and imaging data before telling me about the findings on physical examination. There was talk of fever and a pos-sible pneumonia. I concluded by simply accepting the patient after determining he could go to a regular medical floor.
When I went to see him and asked him what was troubling him his wife told me he had a recurrent soft tissue infection in his leg. He was a morbidly obese, insulin resistant diabetic with hypertension and obstructive sleep apnea and a body mass index of forty five. He was hospitalized two years ago for cellulitis of the right leg. And, indeed, he had a swollen and erythematous right leg.
This sort of communication failure seems to be happening to me more frequently. The following day I was called to accept a patient from an emergency facility because she used heroin and needed to have an observation admission to rule out bacterial endocarditis. Not only did she have no complaints to suggest bacterial infection, she had never used intravenous heroin. She had a long history of ingesting heroin via the nasal route, but never had used a vein. I could imagine sinusitis secondary to heroin inhalation, but endocarditis?
These frustrating hand-off encounters suggest that the basics of practice are being ignored. The basics, of course, include the step by step process of evaluating a patient—the reckoning of who the patient is, what chronic and past medical conditions exist, what the complaints are, what the physical findings are, then what the laboratory findings tell.
This process is then articulated by verbal presentation of the patient to another physician. That presentation is effective only if the information within it is accurate and also has coherence. So the first patient I mentioned above can be medically described well in a couple of sentences: “This is a 68 year old, very morbidly obese, white, male, hypertensive diabetic with a complaint of malaise and fever.” When one hears that last sentence one has an immediate picture of the “who” of the patient, at least in the medical sense.
I would also urge colleagues to consider including in that first sentence any information that medically defines the patient. If a patient suffers from a severe cardiomyopathy, or is being treated for a malignancy, or has a major ongoing series of morbidities, those should appear in the opening first or second sentence. “This is an 85 year old with advanced dementia, DNRCCA status and an ejection fraction of 25 percent who was brought to the hospital due to fever from the nursing facility where she is a resident.” I find that more typically when an ED clinician calls regarding that same person, I am told about an 85 year old patient with fever and a urinary tract infection and a high white blood count. Verbally expressing the “who” of the patient is critical to better communication. It is essential to treating people rather than processing patients.
The issue of the heroin addict implies poor patient communication but also implies that she was evaluated without the craftsmanship demanded by competent practice. If you are practicing in an emergency facility, particularly one in a state and nation known for its huge epidemic of deaths from opiate abuse, you have to be able to have a competent conversation with people who use opiates. That includes finding out their method of ingestion—prescriptions, intravenous ingestion or nasal ingestion; one of the oldest methods of ingestion is to smoke it. You need to know how often they need to take it to avoid withdrawal. Then you can employ “harm reduction” strategies which include questions about needle exchanges, Narcan availability, instruction about the safest ways to injectand also question the patient about previous rehab attempts, street Fentanyl issues and ask for a social service consult regarding treatment venues for the patient. (see SHM’s website: http://www.hospitalmedicine.org/Web/Quality___Innovation/Implementation_Toolkit/Radeo/radeo_home.aspx
This particular patient who regularly used opiates was fully employed, demonstrated insight into her addiction, recognized that at this point she was using heroin pretty much to avoid withdrawal symptoms and had been thinking of finding some treatment options to “get clean.” She “used” several times a day. Since she had spent about twelve hours within the other hospital and our own it was pretty clear that she was dosing herself while in the hospital and she had no withdrawal symptoms.
As I listened to her describe the symptoms that had brought her to an emergency department in the first place(which were fairly trivial) and heard what she had to say about her life it struck me that subconsciously she was most likely looking for some help with the primary problem of her life, opiate dependence. Sadly our society has this problem in spades and our medical /social system seems flummoxed about what to do with it. We are unable to employ models successfully employed in other countries, but that is the subject of another of my screeds and tirades. In any event, her “who” was much more in need of some counseling and support than blood cultures and antibiotics.
A fifty-six year old woman is brought to the emergency department because she exhibits confusion. She is accompanied by her elderly mother who does not see her often but has on the day of her presentation randomly tried to communicate with her and found her confused. The mother cannot contribute much regarding anything else but knows she has been in good health and knows she does not smoke but thinks she drinks alcohol frequently. The patient exhibits mild confusion but is fully oriented. She seems to have memory impairments. She appears to have no focal neurological complaints. Her blood alcohol level is 0.08 gm per deciliter and a CT of her head reveals no acute lesions. She is afebrile and a CBC and basic metabolic panel are unremarkable. Her symptoms are attributed to ethanol and she is discharged.
En route to her mother’s car she suffers an event involving a fall. She appears unhurt. She is returned to the emergency department and admitted with a suspicion of alcohol withdrawal and possible seizure. She was admitted by a hospitalist and evaluated by a neurologist.
Eight hours later she is found by the rounding hospitalist to have an expressive aphasia and a right homonymous hemianopsia. She is fully cooperative. She has a slight fever. An emergency lumbar puncture reveals lymphocytosis and is positive for herpes simplex antigen. Appropriate antivirals are administered. She recovers after seven days.
A forty-two year old woman presents to the emergency department with subacute abdominal pain. Her urinalysis reveals leukocytes and she is treated for a urinary tract infection and released. She returns after seven days complaining of abdominal pain, is found on urinalysis to again have leukorrhea and a CT of the abdomen is obtained and is negative. The hospitalist is called to admit her for a urinary tract infection that has failed outpatient management. She arrives at the floor. On questioning she complains of a month of progressive epigastric pain exacerbated by food. Her physical examination reveals marked tenderness to palpation in the epigastrium. Upper endoscopy the following morning reveals a large and deep gastric ulceration.
A sixty-one year old nursing assistant presents with right upper quadrant pain of sudden onset following the ingestion of a fatty meal. She has had two episodes of alcohol related pancreatitis, the last nine months previous, after which she gave up all alcohol ingestion. A CT of the abdomen reveals a pancreatic cyst, slightly larger than when seen before. Her serum lipase is normal. She is admitted for acute pancreatitis. When she is examined on the floor she reports the pain has improved. Her examination reveals marked tenderness in the right upper quadrant. She describes her pain from previous pancreatitis to have been different-epigastric with radiation into the back. When asked what she thinks is causing her pain she says that she thinks this must be her gall bladder as she had a similar and brief episode two weeks ago after eating fried chicken. Ultrasound of the gall bladder confirms biliary sludge and wall thickening.
“Anchoring” is broadly described as a cognitive bias that occurs in decision making.It is a cognitive event dependent upon the human tendency to rely too strongly on the first piece of information that is offered in a decision making task. Each member of the team then reinforces this error, in writing and verbally. Unless a member of the team is contrarian enough to fully reevaluate the data and repeat investigations, the error anchors the problem into the wrong solutions. So in all three of the above scenarios we see a “first thing” offered— a urinary infection, an alcohol related problem and a pancreatic problem—that anchors the decision making process. In medical care I would argue it can then propagate through “groupthink” in which members of a group find it easy to accept things that are not necessarily true to minimize their cerebral work and to keep themselves in the majority—to conform.
Anchoring, in my view, is a common threat to patient safety. It usually is markedly exacerbated by inadequate information gathering, inadequate physical examination, a failure of deductive reasoning, a comfortable emphasis on the importance of laboratory tests or imaging, or a combination of all of the above.
In the first case, assuming the patient had an alcohol related problem was contrary to her examination and was based on inadequate information. Many people drink alcohol frequently and are not sick from it. On examination she was muscular, healthy appearing, well kept and not confused but rather having trouble with her speech. Some people addicted to ethanol do consume enough to give them withdrawal symptoms and are good at hiding it and appear healthy. But the evidence for this lady having symptoms due to withdrawal were pretty flimsy. She had no tachycardia or tremor. She had no stigmata of liver disease. Her ethanol level was consistent with the ingestion of perhaps two cans of beer.
In the second case there was an inadequate history obtained and the physical examination was superficial. The diagnosis of urinary infection was made on the basis of a lab test and not on urinary symptoms (asymptomatic bacteruria.) Going with that handle, that anchor, is so very tempting because it finalizes the work, ends the intellectual chore of actually listening to the patient and hands off the problem.
In the third case there was a failure of “all of the above.” These are the worst. And it is embarrassing when the patient herself ends up telling you, twelve hours after admission, having been examined by two physicians, what the correct diagnosis is.
This is a form of thinking within a group of people in which dysfunctional decision making occurs as a result of the group’s desire for conformity. Why the group favors conformity can be multi-factorial, but often it involves devotion to the leadership’s thought process. In this process the group tends to throw out data that conflicts with their view of reality and isolate dissenting voices
This is one of the problems to which medicine is not at all immune. The opiate addiction crisis is in part to blame on a dysfunctional thought process, to which multiple medical professionals succumbed, and which became a type of thought conformity which went unchallenged in large segments of the the medical establishment. This was the unproven supposition that people with chronic pain cannot become addicted to opioids.
Anchoring I suspect can also be engendered by the protocols in place to identify stroke and sepsis in hospitalized patients. When sepsis or stroke alerts are called, the symptoms or signs the patient is exhibiting have now been “anchored.” Clinicians need to be wary.
Probably the best antidote to the anchoring process in medical thinking is the mature ability to constantly hold a diagnostic assertion in the mind while at the same time subjecting it to doubt. What one also sees in some very skilled clinicians is a profoundly humble attitude in communication with other professionals, a sincere posture of welcoming critique, a “Please tell me when you think I am wrong” posture in discussing diagnosis and therapy. This is a humbling job. “Pride goeth before the fall.”
A piece of black humor I hear often uttered regarding patient satisfaction surveys is the hope that the patient survey does not arrive at the same time the hospital bills start to appear.
Humor thrives on recognition and examination of the absurd. Who has not received a medical bill that appears absurd? A page filled with descriptions and explanations are all quite mysterious, even to physicians. We puzzle over pages listing inscrutable procedures, descriptions of co-pays, explanations of family and individual deductibles, cost of procedures, insurance adjusted price, amount billed to insurance company(but awaiting final determination).
The standard hospital bill delivers complexity upon complexity, to say nothing of various errors that can occur. Once it took almost a year to convince a local hospital that the reason my insurance company was not compensating them for my wife’s major procedure was because they were billing it incorrectly with a cosmetic procedure code. Actually, it was my office manager who spent hours on the phone, month after month, until someone on the other end awakened from a computer screen induced stupor and billed the event correctly.
Our American medical care “system” has become rife with what some economists call “economic pollution.” The insurance realities for almost everyone change quickly as employers switch carriers to save costs. Insurance carriers amend rules incessantly as they alter costs and benefits to maintain profit. Individuals who purchase their own insurance jump from plan to plan as costs go up. There are so many variables and pitfalls that the entire system is burdened with clerical costs that consume massive amounts of time and money. The confusion inherent in the system makes the analogy to smog warranted. One can hardly see the economy of the process for the smog of changing and flummoxing economic rules that enshroud it.
For practitioners it means massive costs in overhead and hiring staff that can work to collect fees from the various entities that insure us. For many patients who have insurance the system is so complex that they cannot comprehend it.
Sadly, for many insured patients, the one thing they do comprehend is how precarious they are in terms of health insurance. If they lose a job, they lose insurance and perhaps a chronically ill spouse dependent on that insurance will go without medical care. Or they know that even though they are insured, they really cannot go to a doctor because the deductible portion of their coverage is something that would financially drown them. Frequently we meet patients who are insured but cannot afford the prescribed medications, such as the best inhaled bronchodilators or most advanced insulins. Medicaid is now available in many states to people with very modest incomes, not available in others. The system is labyrinthine and laden with economic smog. A large percentage of patients with Medicare are in “managed care” plans administered by the insurance giants, changing the rules frequently and always seem to be merely government-sanctioned middle men extracting a rent from the system. We have all dealt with the wrenches they can throw into care plans to maintain their profit margins.
One of the very important skills in patient communication is the art of dealing with patient anxiety and fear. When that fear is economic, how do we deal with it? Recently I worked with a patient hospitalized for acute manifestations of what appeared to be chronic conditions of which he had been totally unaware. He was eligible for Medicare, his wife was not. She had chronic medical problems which were covered by his employer’s insurance. As I tried to explain his conditions he warned me that he could not stay in the hospital for fear of losing his employment, thus losing the insurance he depended upon to care for his wife. He assured me he could not afford to purchase insurance for her as an individual.
Thus his anxiety was something of a cascade, moving from economic insecurity to personal anxiety regarding his diagnoses and his job, to spousal and familial anxiety regarding the care of his spouse. How do I communicate with him regarding that?
First I think it is crucial not to deny that the anxiety is real and understandable. To admonish him for not focusing on his own well-being, to assure him that “something could be worked out” or to shame him for not addressing his own medical problems before they became so acute would not be in any way helpful or therapeutic. Acknowledgment that he had a situation that would make anyone worried and anxious would be truthful and empathic. Saying something like, “I see you have a real dilemma facing you at this point that would make anyone worried” would be a good start to exploring what his options might be. The next step might be to assure him that we, the hospital, would try to help him sort out his options regarding insurance, putting a consult and call to the social worker who could help him understand what might happen to him and his wife if he lost time from work, lost his job or became disabled.
There may be no happy ending to these troubles. The fortunes of many of our patients are dashed upon the rocks by the smoggy winds of the “system.” It is foolish to to deny that financial anxiety is a vicious partner to the other anxieties our patients face.. Sometimes getting that anxiety out onto the table and being empathetic about it is the best we can do to help our patients along their journeys.
I remember my mother speaking fondly of her cousin who had gone deaf in childhood from a measles infection. As a young woman she died when she was struck from behind by a trolley she could not hear. Kids remember stories like that. It put measles into a new realm of fear for me. Today we read of outbreaks of mumps and measles in scattered communities in the United States where significant numbers of parents refuse to immunize their children. The refusal to immunize has stemmed, at least in part, from a completely debunked study linking autism to immunization. To the typical physician this is baffling. I would assert that these refusals are also due to a cultural amnesia regarding what havoc these diseases—polio, measles, mumps, diphtheria, pertussis and rubella wreaked on patients prior to the practice of immunization.
At the time I was born children were immunized in the U.S. for diphtheria, pertussis and tetanus. Smallpox vaccination was also available and I can recall a public health nurse jabbing it into my arm in a starburst pattern when I was four. The other immunizations were merely on the horizon. Dreaded most of all, perhaps, was polio, which crippled children and often killed adults. I went to school with children who wore steel braces on their legs, having contracted “infantile paralysis,” as polio was called, in their first years of life. Polio was disfiguring, paralyzing; I remember photos of stricken men and women who were living out their lives in an iron lung. For less terrifying diseases like chickenpox, measles, mumps and rubella there was a sense that they were inevitably suffered.
For those formerly “inevitable” infections, a wily general practitioner or pediatrician who cared for you, particularly in a small community where he usually cared for almost everyone, had to offer you the chance to become immune to these diseases by making sure you suffered from them at the optimal time of your childhood. So between the ages of four and six I was exposed to children in my small community who had mumps, measles, rubella and chickenpox at various intervals, to make sure that I was immune. The doctor would call and I would be exposed to whoever in the neighborhood was suffering from whatever it was a good idea for me to catch. Chickenpox was a no-brainer, a fairly mild infection for a four-year-old but virulent, scarring and no fun at all for an adult. Obviously, one wished for mumps in the small boys, lest they contract it during adolescence when it might have disastrous effects on the testicles. Rubella and measles were a must, particularly Rubella for girls due to its ability to complicate pregnancy and produce children with congenital rubella syndrome.
From personal experience I can say that suffering these diseases was no fun. A good physician wanted you to get them when you were healthy and young because the suffering from them in adulthood is far worse. These diseases were particularly distressing for parents because, I assure you, something like the mumps turns you into a very sick puppy for days. Moms would typically have two or three drooling, febrile children lying about looking like lethargic chipmunks. And certainly there could be complications to these disorders— neurological damage from mumps, superimposed bacterial infection in almost all these viral diseases, deafness from measles, here and there blindness or rarely death. Smallpox had about a 30 percent death rate among descendants of Europeans, higher in other ethnicities, so virtually no one was foolish enough to refuse to immunize their child against that. Culturally, smallpox retained a cachet drawn from cultural memory that placed it some where in the ballpark of the bubonic plague even through the 1950’s.
The rock star of immunizations would be the first effective polio vaccine developed by Jonas Salk. When it appeared parents sought it for their kids as if it were a holy grail of health. It relieved parents in the developed world from the worry that, like F.D.R, they or their children might be suddenly crippled by an invisible but highly infectious agent. In 1955 The March of Dimes sponsored a wildly popular campaign of immunization that in six years reduced the Polio disease rate in the United States from 35,000 cases a year prior to vaccination to 167 cases in 1961.
Subsequent vaccines became available suggesting near eradication of measles and mumps in 1963 and rubella in 1969,resulting in striking declines in disease prevalence.
The children immunized had parents with a cultural memory of how nasty these diseases could be. Many had parents who served in the armed services, World War II, Korea or Vietnam who had been forced to undergo multiple immunizations and required to take anti-malarials in certain combat theaters. Cultural memory fades. Within a generation or two following the discovery of effective vaccines, no one remembers going to school with a child whose mother died of polio and no one can recall a cousin who went deaf from measles. For too many parents, the cultural amnesia is bolstered by what appears to be willful ignorance, a refusal to learn about the past by reading or listening to those who have lived it. This is coupled with a refusal to respect the hard scientific work involved in creating on a national level an environment virtually free of these diseases.
Negative attitudes toward vaccination appear to me to be part of a darker trend in our culture; a deprecatory view of hard science and intellectual work and a tendency to lash out at intellectuals who bear discomforting news. Of course this is not new in western culture. Semmelweis, the Viennese physician who proved good hand hygiene prevented the spread of infection, had his career destroyed for doing so. In our day, and very recently, there were attempts to pillory the pediatrician in Flint Michigan who first raised the alarm regarding high lead levels in her patients due to the horribly faulty work the city had needlessly done to change its water source. The list of courageous thinkers abused for their brilliance is long.
I am also struck by the ahistorical character of many people who are otherwise literate. Many seem to have no curiosity regarding how life was lived before they were born. To have no curiosity regarding the past, to be stuck staring at the computer or cell phone screen of only today is to be a prisoner of the present. Absent a comprehension of the past it is impossible to form any brilliant imagination of what we want of today or of the future. If we are not students of history, we may be doomed to repeat past mistakes and endanger those who follow.
I was shadowing a practitioner recently in order to give her some feedback on her communication skills with patients. We entered an examination room in the emergency department where we encountered a gravely ill gentleman and his two middle aged daughters.
One daughter sat quietly beside him with a sad countenance. Another daughter stood close by and offered his history to us. Her expression was one of sadness, fear and anxiety. Like her face, her voice quivered with fear and anxiety, but it is her face I remember. When we left the room I asked the practitioner if she made note of how anxious that daughter appeared. She shook her head, saying she had not seen it. Note that I do not say she ignored it. I think it is more likely that she could not see it. It was not a failure to note but an inability to see.
In the spectrum of disorders from Asperger’s syndrome to autism, experts seem to agree that individuals diagnosed within the spectrum lack the ability to read emotions expressed by the human face. In communicating face-to-face with people they are disadvantaged and cannot identify joy, sadness or anger. They also cannot “hear” these emotions in the voices of people with whom they are talking. I suspect that not only those within the spectrum of Asperger’s have deficit abilities in reading emotions of others. Just as some of us have perfect pitch or have better color perception than most, there are some of us who do not “read” or “hear” the emotional language expressed on the face and in the voice of the people with whom we speak.
Temple Grandin is an autism expert and animal behavior expert who is autistic herself and has written extensively about her experience. I recall that she said in an interview that she could tell more about a person’s emotional state when she was talking to them on the phone than when she was facing the person—an implication that her visual cortex was somehow trumping or cancelling out her auditory cortex in relation to evaluating the emotion of the person speaking to her.
Emotional intelligence starts with the ability to perceive and name emotions in other humans. I find most doctors are not very good at this. I suspect this is not because they cannot see emotions, but because they have no training in how to respond to them. Physicians are not taught much psychology and psychotherapeutic technique. Most physicians have no training in the cauldron of emotional studies that one finds in literature, music and the visual arts.
Thus when many physicians encounter a strong emotion in a patient or a family caregiver they tend to try to disregard it or to persuade the patient they should not have it. The problem with both approaches is that emotions—anger, fear, sadness, grief—are not chosen by the brain. The brain has them: they are not good or bad, they simply exist and they tend not to just go away. Sadness does not befall us by our own volition. Although the emotions of personality disordered patients may be very inappropriate and reflective of a wildly unrealistic world, this befalls a small minority of people and most emotions are appropriate even if their manifestations seem ugly.
Scholars of patient communication advise us to first see the emotion and then to name it. So when you come upon a patient or caregiver who has a sad appearance and affect, you can say, “You seem sad. Do you want to talk about it?” Then you can express an understanding of it: “I can see how getting sick and losing your job because of it would make you sad and anxious.” You do not need to offer any answers or solutions to the problem. You can correct the impressions of the person if they are false and causing fear or sadness: “I can see you think that this illness is going to make you die soon and I want you to understand that is not the case.” Yet you cannot get anywhere in dealing with the emotions of patients without asking about a person’s emotions.
Rhetoric that you can put into practice in the form of questions or statements:
How do you feel about what we have discussed?
Given what we have talked about, what are you most afraid of?
I can understand that you would feel this way.
Fearis an apprehension about something negative that will or might occur, often of a loss. It might be a loss of function, loss of life. We have to ask patients what they are afraid of, because it is not possible to infer it. An ill and elderly patient may be fearful and sad not only regarding the illness, but because he or she fears they will become a burden on their family.
Sadnessis a reflex to a loss or to a loss that seems very likely to occur.
Angeris generated by loss and fear. Loss often generates a sense of shame and loneliness in us.
The means of comforting patients suffering from fear, sadness and anxiety stemming from the diseases we treat them for is complicated and situational. Often it entails just listening to them. Sitting beside them, assuming an engaged body posture, grasping them by the arm are often more powerful means of communication than words. In some instances an assurance to the patient or family that they will “get through this” is helpful. There are many tragedies in life which we will never get over, but most we can get through. Most people suffering very sad events also experience a sense of solitude or a sense of being alone.
Returning to the emergency department exam room and the patient and his daughters, I can say that there were things that the practitioner might have done to comfort the patient. He was lethargic, struggling to breathe beneath an oxygen mask, suffering from COPD related pneumonia, an element of heart failure and renal insufficiency. He had difficulty speaking due to a laryngectomy. In the years preceding this he had undergone cardiac surgery, cancer surgery and had become dependent on home oxygen. She might have encouraged him that he would feel better with treatment, that he would be in intensive care and that we would attend to his needs.
What about the daughters? There was a conversation needed that did not take place. What were their fears? Who had medical power of attorney? What were their goals for their father? Were they only concerned regarding his survival or were they anxious to explain that he did not want to be on a ventilator again? As a practitioner you cannot know these things until you ask. “You seem to be very anxious and fearful for your father. Can we talk about it?”
You cannot communicate properly with a patient or caregiver until you learn to look into their eyes, read their emotion and respond to it.
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.
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.