Expectant Medical Management

Some years ago, I hurt my right shoulder diving into a pool.  It did not improve with time, so I went to see an orthopedic surgeon who did a careful exam, diagnosed a muscle strain in the rotator cuff, and told me to stay away from activity that caused pain.

As I did not improve, he tried an injection with indifferent results and prescribed physical therapy.  I did this very conscientiously, but still had very limited range of motion.  It was time for an MRI.  

The MRI did not show a tear in the shoulder joint, so surgery was not recommended.  A “strain” is supposed to get better with PT, and I kept doing the prescribed exercises.  I continued to be unable to perform certain motions (such as throwing), however, so the doctor said it was time for surgery.

At surgery, the surgeon found a complete tear in one of the rotator cuff muscles.  He later told me that, while generally very accurate, MRIs occasionally missed important pathology.  He repaired the offending muscle, and I was throwing batting practice for my youth baseball team six months later.

Knee Pain: Garden Variety Arthritis or Something Else?

About four years ago, I developed pain in my right knee.  I was a bit of a runner (“loper” is a better term), and I thought, at my age of 71, arthritis was a good bet.  I tried to ignore it, using anti-inflammatory drugs as needed.  Pain persisted, however, so I consulted an orthopedic surgeon who specialized in knees.

From his exam, he felt my diagnosis was correct, did not do an X-ray, and said I could keep running while managing pain as I had been doing.  I was to return in three weeks if symptoms got worse.  Which they did.  He ordered an X-ray, which revealed the expected findings consistent with a joint that could be a good candidate for arthritis.  There was nothing else of note on the film.

I stopped running, but the pain persisted, so the doctor ordered an MRI, even though he felt it would not show anything more than what we already knew. Wrong. I had a stress fracture of the tibia (the bigger of two bones between the knee and ankle).  The prescription was to lay off high impact activity (i.e., running) until I got better,  Which I did with therapeutic success.

Another Diagnostic Dilemma 

Last year, I hurt my left wrist while breaking a fall after tripping on an uneven sidewalk.  I ignored the pain as long as I thought reasonable, then visited a hand surgeon.  He did a careful exam, and obtained X-Rays that revealed no fracture.  Based on minimal swelling and mild symptoms, he thought I had a mere strain, and gave me a brace, telling me to lay off any activity that caused pain.

I followed this advice without improvement, so the doctor ordered an MRI.  This revealed the fracture that the conventional X-Ray missed. He immobilized the wrist, predicted I would be better in a few weeks, and prescribed physical therapy to insure complete recovery of strength and motion.  Today, I have a hard time remembering which wrist I broke.

Thoughtful, Cost-effective Medicine

In each of the above described situations, some friends felt that my physicians were a trifle glib when evaluating my initial presentation.  They felt they should have been much more aggressive in getting to the diagnoses.  I, on the other hand, thought (and think), they practiced exemplary expectant management.  In each instance, they felt I would get better without the expensive diagnostic tests that only later proved to be necessary.  Critically, they persisted in follow-up until my situation was resolved.  Part of their decision making process was based on their belief that any delay in diagnosis would not compromise the eventual good outcome.  

Head CT Scans in Clinical Practice

Headache is one of the most common complaints in primary care outpatient medicine.  Too often, evaluating doctors order a CT scan of the head upon a patient’s initial visit for this complaint.  There are good reasons to obtain a scan quickly: for instance, patients who state their headache is by far the worst they ever had may have an intracranial bleed that requires immediate intervention.  But CT scans are expensive and expose patients to radiation that may not be necessary.  And most headaches can be characterized safely and accurately with a good history and physical exam.  Follow-up is critical and a scan may be justified if symptoms persist.  This is expectant management, and it is good, cost-effective medicine. 

*NOTE: The diagnostic restraint I am advocating in this post is only appropriate in selected situations.  Physicians must continually weigh a policy of embarking on a diagnostic adventure versus waiting in the expectation that a complaint will improve on its own.

Less Is More

The mantra with which I grew up in medicine was that appendicitis is a surgical disease.  A recent review in the Journal of the American Medical Association (JAMA), however, documents medical studies that show broad spectrum antibiotics can be useful in a selected group of patients in the treatment of acute appendicitis.  Non-surgical intervention, therefore, can be considered in patients for whom surgery is very risky and/or for whom findings on a CT scan indicate uncomplicated pathology.  Deciding on a non-surgical approach requires, however, careful consideration of outcomes, as well as patient desires.  Studies show that recurrence of appendicitis within one year of using the antibiotice approach can range from 15 to 40 percent.  Antibiotic treatment is not a panacea, but can be useful in selected situations.

I was reminded of the more consevrive approach to medical problems with a recent study of laser therapy for symptoms from vaginal atrophy in older patients.  This intervention has become very common in postmenapausal women with recurrent vaginal infections and sexual dysfunction.  Good clinical research, somewhat tardy in the investigation of the usefulness of laser therapy, however, shows that the laser procedure has no advantage over vaginal estrogen cream.  Another cottage industry has been threatened with the new data.

These studies have called to mind many procedures in medicine that have fallen from common use because of good research that revealed their uselessness.  

Swan Song for the Swan-Ganz

The Swan-Ganz catheter is a prominent example.  The determination of the hydrational status of critically ill patients (do they need more IV fluids, or less?) can be very challenging.  In the 1970s, the two physicians after whom the device was named, developed the balloon flotation catheter that could fairly easily be inserted into the lungs through the right side of the heart.  For arcane physiological reasons that are not important for the purposes of this article, accurate assessment of a patient’s fluid status, which is critical to the care of very ill patients, became much easier.  

The use of the Swan-Ganz became a routine standard of care in the 1980’s up to the turn of the century.  Investigators then began to ask the question of whether this elegant tool actually improved patient outcomes. The answer was negative–in fact there was a non-statistically significant trend toward harm.  The routine use of this procedure, which is still useful in selected situations, fell out of favor with these studies.  But not before billions of dollars were spent on the discredited intervention. 

Another Beguiling Procedure Proven Useless 

A similar fate befell the Extracranial-Intrcracnial Arterial Bypass procedure in common use by neurosurgeons and vascular surgeons in the 70’s and first part of the 80’s.  This technique bypassed the normal cerebral circulation, in much the same way that heart surgeons establish circulation around diseased arteries in the heart.  Studies were finally done, and, even though the procedure definitely improved circulation, the clinically relevant question was negative: it did not reduce mortality and strokes, large or small.

Breast Cancer: Progress Through Restraint

Another famous example of restraint in medical care involves the surgical treatment of breast cancer.  The Halsted procedure, established in the late 1800’s, was the surgical standard of care up until the 1970’s.  It involved radical surgery, with removal of the breast and the axillary lymph nodes (lymph nodes in the armpit), and later, the pectoral muscle overlying the affected breast.  This often resulted in morbidity such as intractable swelling of the arm on the affected side, not to mention the adverse cosmetic consequences.  Now breast surgery is much less mutilating, and along with improved staging and diagnostic techniques, it is associated with mortality outcomes equal to or greater than those with the Halsted procedure.

Bad News/ Good News

I am often disturbed by the mindless embrace of new technologies in healthcare that slip into the medical armamentarium before they are proven to actually help patients.  On the other hand, I am proud when medicine finally finds the wherewithal to critically examine the efficacy of interventions that have come into common use without adequate study.  Sometimes, less is more.

Terminal Care Is More Than the X’s and O’s of Medical Interventions

A recent opinion piece in the New York Times caught my attention: “Who Are We Caring for in the I.C.U.?”  I thought it would just be another exasperating chronicle of the staggering disproportion of unvaccinated people needing intensive care compared to the vaccinated.  But I was wrong.

Dr. Daniela Lamas is a pulmonary and critical care specialist.  In the article, she addressed a topic that often arises in the care of critically ill patients: what is a physician to do when the family of a loved one wants interventions that are clearly useless in a terminally ill patient who is unable to make his/her own decisions?  

Dr. Lamas tells the story of a family’s request to transfer a Covid-infected patient with respiratory failure to her institution, a larger hospital with greater resources than the transferring hospital.  Talking to the ICU doctor at the other institution, she felt that her hospital could do nothing that the other hospital had not already done.  Moreover, the transfer itself could be dangerous.

Nevertheless, she OK’ed the transfer.  Why?  First, let me tell you of a wise observation one of my esteemed medical mentors told me years ago: the care of the demented patient is largely the care of the patient’s loved ones.  This acknowledges the paucity of effective therapies for patients with end stage dementia, at the same time understanding the needs of family members.  They need to know that all reasonable interventions are being undertaken for loved ones, that the patient will be kept comfortable, and that mortal decisions are understandably excruciating.  Sometimes, misplaced guilt needs to be alleviated.   .

So Dr. Lamas’ action implicitly acknowledged the needs of the members of the family–they needed to know that they had done everything possible for their loved one.  Her decision was one that benefitted the family, but did not hurt the patient (the patient died two days after the transfer).  Her approach went beyond the mere X’s and O’s of medical care.

Families’ desires frequently are at odds with what a physician thinks is appropriate for a patient.  In the absence of a patient being able to make decisions (and in the absence of an explicit advance directive), some families want every measure taken that preserves life–every second of life is precious regardless of any other consideration.  

Many times, I have been in a situation where family desires conflict with my own sense of doing what is best for a dying patient.  Life is precious, but in desperate situations, my priorities were ensuring comfort and dignity.  

I have never come to peace in such fraught situations.  Physicians are taught, number one, to be the patient’s advocate, and doing CPR on an imminently terminal, hopelessly ill patient does not seem to be in the patient’s best interest.  

With Dr. Lamas’ thoughtful commentary, however, sheds light on the less than obvious challenges in making good decisions in the care of terminally ill patients.

The Best Treatment for Lung Cancer: Prevention

Here are some excerpts from tobacco ads in the United States from the thirties up to 1964:  Lucky Strikes were “gentle on my throat.”  Phillip Morris advised: “Play safe with your throat.”  Old Golds were “fresh as mountain air.”  And, in the type of claim that must be illegal today, “smoking Camels stimulates the natural flow of digestive fluids … increases alkalinity.”

Addressing the Problem through Public Health

The prevalence of smoking in the US peaked in 1964 at 42% among adults.  In 2019, the number was 14% (males 15.3%. Females 12.7%).*  What happened in 1964?  The publication of the first Surgeon General’s report that explicitly warned of the dangers of tobacco use.

Over the years, a steady march of public health interventions amplified the messaging.  In 1966, individual packs of cigarettes were required to bear the message that smoking “may be hazardous to your health.”  Cigarette ads were banned from radio and television in 1971.  In 1988, that year’s Surgeon General’s report stated that smoking was addictive, just like heroin.  Attorneys generals and the largest tobacco companies agreed to prohibit advertising targeting youth.  Legal restrictions on smoking in public spaces became commonplace, and media counter-marketing campaigns became prominent.

Taxation   

A factor that was (and is) just as important as the public health interventions in decreasing smoking, if not more so, was taxation.  The price of cigarettes varies from state to state (the cost of smoking in tobacco growing states is generally less than the national average), but still high compared to the sixties.  The average smoker smokes 15 cigarettes per day, spending $3.90 per day in the states where cigarettes are least expensive (Missouri and Virginia).  In New York City, a similar consumption costs $9.60 per day, amounting to an expenditure of $3504 per year for tobacco. 

For arcane technical reasons, the federal tax on cigarettes varies from state to state, but ranges from about $1.00 per pack to $4.00. The impact of taxation is remarkable: in Chicago (where taxes on cigarettes are the highest in the nation), city taxes per pack are $1.18, county taxes $3.00, and state taxes $2.98.  And this does not include the federal tax. 

Results 

What is the effect of all of the anti-smoking interventions?  The incidence (new cases per year) of lung cancer in males has decreased by 47% since 1984 (the decrease in females, though real, is not as striking due to a lower prevalence of smoking).  This success is largely due to smoking cessation, though improved treatment and earlier detection are also factors.  And note this analysis does not even address mortality from other cancers and heart disease for which smoking is implicated.  

Remaining Challenges

We still have a ways to go. In 2018, 234,000 new cases of lung cancer were diagnosed in the US.  In 2015, the national expenditure for treatment of lung cancer was $13.4 B.  In 2019, 13.3% of cancer survivors were cigarette smokers. 

The Power Intervention: Prevention

The moral of this story is that low tech intervention can have a major impact on health.  Few public health campaigns have had the impact on well-being that the anti-smoking campaign in the US has had.  

But, another condition that cries out for urgent public health intervention is America’s weight problem. According to the National Institutes of Health, obesity and overweight together are the second leading cause of preventable death in the United States, close behind tobacco use. An estimated 300,000 deaths per year are due to the obesity epidemic.

President Biden has recently revived the concept of the “moonshot,” a federal initiative to decrease cancer deaths by 50%.  He is no doubt thinking about high tech interventions in the detection and treatment of conditions with high mortality. For the biggest and most cost effective interventions, however, he would do well to look at the power of prevention.

*These stats are from a trove of facts available to all at www.ncbi.nim.nih.gov,  Among the most interesting: those who hold a college degree have a 6.9% rate of smoking, while the percentage for non-college grads is 21.6%.  Households with incomes per year of more than $100,000 have a prevalence of smoking of about 7.1%; households with less than $35,000? 21.4%.

Warning: Disinformation May Be Bad for your Health

There are two extreme approaches to the Covid epidemic: shut down everything, or ignore the whole thing.  Of course neither position is defensible, but finding the golden mean between the two strategies requires an understanding of nuance and a respect for complexity.  Thoughtful, well informed people can disagree on where to land on the spectrum, but looking at the quality of our national dialogue on Covid issues, you might believe there is no middle ground.

Members of school boards all over the country are facing threats for their stances on Covid mitigation strategies for students.  Legislators are subject to vituperative communications and demonstrations regarding policies to try to get Covid under control.  Patrons at restaurants excoriate employees who are trying to enforce masking and vaccination mandates.  Demonstrators gather outside of hospitals to demand unproven drugs like ivermectin be given to Covid patients.  And it goes on and on.

Public Figures Pile On

The mindlessness of events like these reflect a startling lack of appreciation of the complexity of the issues surrounding the Covid pandemic, and the obliviousness is not confined to the masses.  Public figures in the media and politicians also build on the stupefying avalanche of disinformation, sometimes with explicit mistruths, often with selective use of data.

  • A Houston physician blames the Covid surge in Texas on vaccinated individuals
  • A US senator claims that masks are completely ineffective in protecting against Covid infection
  • A major news network edits a piece to “prove” that the director of the CDC states that comorbidities, not lack of vaccination, were responsible for the killing 75% of unvaccinated people. Hosts of a major cable “news” show seize on this, asserting this is further evidence of the government’s dissembling about the efficacy of vaccination.  
  • One commentator asserts that current vaccines have no effect against the Omicron variant

Fact Based Responses

Some of these assertions are too ridiculous to comment upon.  Others gloss over the truth. 

Masks may not be as effective as we would like, but they do reduce Covid infection in people who wear them conscientiously and correctly.  

The CDC director was referring  to a population of vaccinated people who died, three quarters of whom had four or more comorbidities (the study looked at 1.2 million vaccinated individuals, 36 of whom died).  

Vaccines have failed to reliably prevent Covid infection, but continue to confer a high level of protection against severe disease, hospitalization, and death.

Ignoring Facts to Make a Point

Selective citation of facts without additional acknowledgement of information that muddies a cherished position is another, more subtle way of purveying disinformation.  This is perhaps the most pernicious brand of truth twisting, as facts, limited though they may be, are often presented accurately. Here is an example.

A prominent surgeon from Johns Hopkins medical school, is a strident opponent of requiring children to be vaccinated.  He points out, accurately, that there are very few deaths in children from Covid and plays up the exceedingly rare vaccine complication of myocarditis in children.  But he is silent about the broader societal impact of asymptomatic infection in children.  Are they important vectors to spread the disease to a population more vulnerable to serious complications of Covid infection?  They are.  Are hospitalizations of children for Covid infections at an all time high?  Yes.  Do children suffer long term complications of Covid such as the “long haul” syndrome?  

We don’t know, and this physician’s analysis is an example of making a point without a comprehensive look at important possibilities.  A study out of Italy found that one third of 129 children aged 6 to 16 had two or more lingering symptoms for at least four months after infection.  Symptoms included insomnia, fatigue, muscle pain, and persistent cold-like symptoms.  Even though preliminary, these findings deserve to be part of any responsible analysis on whether children should be vaccinated. 

Consequences

Disinformation comes in many forms, including outright untruths, tendentious manipulation of data, and willful simplification of complicated issues. In a simpering interview in November, the above physician repeatedly used words like “crazy” to characterize policies with which he disagrees.  This smug assuredness, characteristic of so much of the rhetoric on Covid challenges, compromises credibility,* and probably retards progress on meaningful solutions to the epidemic.  

I may be a bit out of my lane in this blog entry–the commentary is more sociological than medical.  However, It is not hard to connect the rhetorical dots and feel that, if we had a reasonable and productive national discussion on the pandemic issues, hundreds of thousands of deaths attributable to Covid infections could have been prevented..

*This same physician, in a simpering interview in November of 2021, confidently predicted the epidemic would be over in December.  Early in 2021, he predicted that the US would achieve herd immunity by April of that year. 

….

Blocking and Tackling in Health Care

In a recent blog, I noted that the infant mortality rate in the US is higher than the other ten richest nations in the world, and that our life expectancy was three years less.  Our health care system is partly responsible for these disturbing statistics, but many extra-medical factors play an important role, including obesity, poverty, racial discrimination, etc.  

Nevertheless, there are gaps in our health care system that contribute to our poor showing on the international scene.  They are all the more reprehensible because some of them are easy to fix, at least theoretically.  Hypertension, high blood pressure, is front and center.

With revised definitions of hypertension in 2017 (blood pressures of greater than 130 systolic, the higher number, or greater than 80 diastolic, the lower number), 47% of Americans have high blood pressure, of whom about 20% are unaware of it.  In 2019, over one half million deaths in the US had hypertension as the primary or contributing cause.  One estimate of the average yearly cost to our society from 2008 to 2014 was $131 billion.

What’s exasperating is that none of this is necessary.  There are simple interventions for the prevention, diagnosis and treatment of hypertension.  Conservative measures such as  improved diet, weight control, exercise, limiting alcohol ingestion, and not smoking are all effective, and when it comes to medications, the cupboard is full.  We have an array of pharmaceutical treatments for hypertension that are safe and effective, most of them with few side effects.  And most can be taken once a day.   

So what’s the problem?  In my judgment, it is a simple lack of prioritization.  We are in the thrall of high tech interventions that grab the headlines, but they do not have nearly the impact on our nation’s health that control of hypertension would have.

It starts with detection.  Blood pressure machines that are now common in drugstores may not be dependable–repeated measurements in a medical setting are necessary.  And what about medical settings?  I am sure your primary care doctor checks your blood pressure, but I bet this does not happen reliably in visits to your dermatologist, ophthalmologist, orthopedist, etc. Or the dentist’s office.  Had we the will, we could make this happen: insurers (Medicare and Medicaid included) could simply withhold reimbursement for services unless a blood pressure is recorded in the medical record.  If the BP is high, there should also be documentation that the patient was advised to see his/her own primary care doctor.

Another hurdle is compliance once the diagnosis is made.  I am reminded of “directly observed therapy” (DOT) used in the treatment of tuberculosis.  To enhance effectiveness and minimize resistance to drugs for TB, some clinics have devised means to observe notably unreliable patients actually ingesting the medicines.  This intervention would not translate to the hypertension problem, but I cite it as an example of a policy that reflects a will to get a job done.

Some years ago, I visited some medical clinics in Tanzania.  They were primitive by our standards, but highly effective for the needs of the population.  In the rare instance that you needed an intervention for cardiac disease, you had to go to the neighboring country’s capitol, Nairobi.  But if you had malaria, tuberculosis, or HIV-Aids, these clinics were well equipped to handle these problems that were common in Tanzanians.

Our medical technology is the envy of the world.  We have easy access to scans that give us staggerly detailed information, cancer treatments that actually cure previously fatal disease, transplants, robotic surgical interventions that were previously impossible, etc.  It goes on and on.  These are the touchdown passes of our system,  but somehow we don’t provide the basic blocking and tackling needed for the routine and important problems that afflict most Americans.

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Waste Below the Radar in Health Care

The Journal of the American Medical Association (JAMA) recently published three articles pertaining to administrative costs of health care in the US.  (November 2, 2021).  In 2019, the US spent $3.8 trillion on health care (quite a bit more in Covid times, no doubt), with about $950 billion going to nonclinical administrative functions.  One of the articles compared the number of administrative workers in service industries such as education and law to the same number in health care.  It cited a study that showed health care had more than twice the number of administrative support personnel for doctors and nurses than for teachers and lawyers.

I don’t know if the above example is fair, but the estimated administrative costs are probably understated on the whole.  Cost estimates for our health care system typically focus on providers (hospitals, doctors, nurses) and don’t capture the expense of, say, employee benefit consultants who help businesses research and negotiate health insurance plans.

The literature on administrative costs is difficult and extensive.  Anyone can simply google “administrative costs in US health care” and encounter an avalanche of articles, a fair amount of which is controversial.  For instance, almost 20 years ago researchers found that administrative costs per capita for health care in Canada were less than one-third of the costs in the US.  This was met with many objections as to study methodology, questionable value of comparison to a health care system much different from the US, and even the political motivation of the authors.

As a former provider and a current consumer of health care, however, I don’t need exhaustive data to convince me of the truth that there is significant waste in our health care system.

When I was in a  university physician group practice, we employed a  “coordinator” to be sure our charting satisfied insurers’ requirements for collecting billing claims  This included physician signatures for every clinical encounter..  This person was full time, with benefits and his/her sole job was to track down the doctors and present charts for our missing signatures.

Some years back, physicians committed the sin of paying more attention to good patient care than billing.  Corporate medicine registered this and now employs nonclinical personnel to be sure physicians bill the maximum amount under the rules.  

(I cannot resist highlighting the irony of some of the administrative functions designed to save money.  Some activities engender a virtual arms race: insurance companies make rules to, say, limit billing, and medical providers hire consultants to help them figure out how to beat the rules. The opportunity costs are enormous: dollars expended on these activities could be used for patient care).

And then there is an administrative cost that shows up in no analysis of administrative costs that I am aware of.  Members of the public face a plethora of options when choosing insurance plans–this occurs every year for many people, such as those who have changed jobs and therefore have a different health insurance plan. They navigate a labyrinth of issues that involve deductibles, co-pays, in network vs. out of network costs, prior authorization (the requirement that an insurance company must sanction a test before committing to coverage), and eye popping provider bills that seem to constitute a bureaucratic stress tests.*  And don’t forget the donut hole.

The time the public puts in navigating health insurance issues is clearly staggering.  I wish someone would do a study of these in-kind contributions we all make to health care.

The point of all of this is that a lot of our insurance premiums are going for nonclinical purposes.  One of the articles referenced above asserts that more than one quarter of the cost of administration in health care could be eliminated without compromising the quality of care. Another compares our administrative costs of health care to the other ten richest countries in the world.  According to this study, we spend about three times the amount of money on administration as the average of the ten countries.

Do these bureaucratic costs pay off?  Our rmean life expectancy is three years less than that of the ten countries, and our infant mortality is the highest.  But these and other measures of outcomes are another story.

*I recently got a statement that read: $400 that the provider billed, but the total cost (allowed amount) was $34.40, of which my plan paid $29.24.  I paid $5.16.

A Personal Note on Hospice Work

In the introduction to this blog on September 5, 2021, I stated that initial entries would be heavy on hospice experiences during my ten plus years as a hospice team physician.  I have now exhausted stories that I can tell without betraying confidences–some circumstances are so idiosyncratic that people involved (patients and families) might be identifiable.

So I am now going to concentrate on general healthcare issues, attempting to identify and explicate important issues for intelligent lay people that get little coverage in the popular press.

So this is likely my last entry on hospice matters.

When I told new acquaintances what I did for a living while I worked in hospice, most people observed that the work must have been very difficult.  Generally, they were referring to the emotional challenge of caring for terminal patients.  

In fact, I found the hospice work very fulfilling.  I have had a varied background in medicine, including medical education, hospital administration, and a bit of research—all in the context of the practice of primary care.  But none of it has been more satisfying than my hospice work.  To be sure, there have been more than a few tragic moments, but, with my mutually supportive team of professionals, and, I guess,  a certain amount of professional distance, I have successfully navigated the emotional minefield.  And the good my team and I have done for terminal patients and their families far outweighs the emotional burden.  Taking away pain for the last two or three months of a patient’s life, for instance, has provided me with a powerful, palpable sense of accomplishment that was sometimes lacking in my other professional experiences.  

My hospice work was always interesting, even in “routine” cases—after all, every situation featured a new cast.  Of course there was a lot of sadness, but often a measure of joy.  I saw families coalesce around the care of a loved one and actually celebrate a life well lived and well loved.  As I reflect on my hospice experience, however, the overriding descriptor is profound.  I, and my hospice colleagues, were right in the middle of momentous events for patients and families, and were privileged to provide comfort care, while helping to guide them through the most difficult decisions in life.  

I think of the 32 year old  mother of three young children with a fatal pulmonary disease.  We were able to make her comfortable while maintaining lucidity, and she wanted to remain at home with her children for the duration of her illness. But she did not want to die in their presence.  We were fortunate to time it well—we got her to our short term care hospital facility the day before she died.

Or the World War II vet who fought in France and came home with a bottle of red wine.  He had lung cancer with widespread metastases.  With judicious doses of narcotics, he looked much better in person than on paper.  He was intelligent, understood his prognosis and accepted it, but had one very big regret.  He had been saving the Bordeaux for his sixtieth wedding anniversary celebration two months hence, but he knew that he could not partake.  Due to the risk of over sedation from the mix of alcohol and narcotics, he had been admonished to refrain from drinking.  When he told me this, I simply stared at him.  He said “Maybe I could…”, “I guess it couldn’t…”, “Maybe I will….”  When I left his apartment, I said “To your health.”  He did not wait for two months.  Good thing—he died about three weeks after I saw him.

Or the 55-year-old lifelong passionate Cubs fan with amyotrophic lateral sclerosis (Lou Gehrig Disease).  She had battled the disease for three years and was now completely paralyzed but for some marginally functioning respiratory muscles.  She had clearly stated she did not want to be put on a respirator, and, with the help of oxygen administered through a nasal cannula, she struggled through the summer of 2016, a Cubs cap atop her head.  She somehow made it through the world series win, then died a few weeks later.  This could have been a treacly Hollywood script, but it is true.

Or the pair of married 90-year-olds who had both been on kidney machines (hemodialysis) for years.  They were exhausted, overwhelmed, and depressed.  When we explained that discontinuation of dialysis was an option, and that kidney failure was very unlikely to cause an uncomfortable death, they both perked up and decided to discontinue treatment.  Their family members would have liked to have them persevere, but they honored their parents’ decision.  The wife died within a week, and the husband, somewhat discomfited by his lingering life, died three weeks later.

Or the 72-year-old man with terminal lung cancer.  Sam’s wife had left him 15 years before, declaring that she was gay and was moving in with her new partner.  The couple had collaborated in the raising of their daughter.  When Sam became unable to care for himself, his former wife, and her partner, moved in and tended to him until his death.

Or the undocumented Mexican immigrant with widespread stomach cancer.   59-years-old, Estaban understood his prognosis, but once we got his pain under control, he became obsessed with the idea of returning home.  He had no money, but my hospice company has a foundation, funded by donations from grateful family members of terminal patients for whom we cared.  We financed his trip home, and, not knowing what kind of medical care he would get in rural Mexico, we loaded him down with cartons of morphine.  I often wonder how the border crossing went.

Or another World War II vet with heart failure. 95 years old, John fought in France and somehow came home in one piece, the proud possessor of a purple heart.  He married and started a successful car dealership in Chicago’s northern suburbs, and this enterprise financed the college education of his four children.  John’s heart had betrayed him—it was pumping at about 10 percent efficiency, and it was clear he was not long for this world.  HIs elderly wife, exhausted by the care she had lovingly provided to John, had reluctantly placed him in an assisted living facility.  

Like many hospices, my company employs veterans’ liaisons.  Among their duties is recognition of the service of our veterans, and Captain Warner, a retired army ranger, carried out this mission with a passion.  On the day of John’s ceremony, the hospice team, family, facility personnel, and other residents gathered in a common room.  John was wheeled in, listing to his left, army cap askew.  He seemed to be only intermittently conscious.  The captain played a recording of the national anthem, read the certificate of appreciation, and presented an American flag to John.  He then rose to attention and snapped off a smart salute.  John opened his eyes and, with a supreme effort, raised his tremulous right hand to his cap.  It was an imperfect salute, but a salute it unmistakably was.

A Primer (short) on Clinical Trials

When cholesterol lowering drugs were being investigated, there was no question that they lowered cholesterol levels in the blood.  But the cholesterol level is a mere number, and does not address the crucial question of whether patients actually benefit from these drugs.* This is the clinically relevant question, a concept that sometimes seems to get lost in the approval process of new drugs.

Enter Aducanumad (brand name Aduhelm).  The U.S. Food and Drug Administration (FDA) recently granted approval of this drug for patients with mild symptoms of Alzheimer Disease, based in no small part on its unquestioned ability to attack the amyloid plaques found in the brains of Alzheimer’s patients.  These collections of protein have been the subject of research for years in the neurological research community, and the idea that removing them to treat Alzheimer’s has been the subject of extensive investigation.

Well, does Aducanumad, in addition to obliterating the plaques, actually help patients?  Do the clinically relevant measures of cognitive decline improve, or at least progress more slowly?

Two large, well designed studies addressed this question.  One showed a miniscule advantage in the scores of Alzheimer’s patients on neurocognitive testing; the other found no difference between the patients who got the drug (the intervention group) and those who got placebo (the control group).  Neurologists have mostly concluded that we still do not know if Aducanumad is effective in treating Alzheimer Disease.

We do know it is expensive ($56,000 a year!), and we know that it is associated with brain swelling (reversible) and sometimes minor cerebral bleeding.  We also know that FDA approval was highly controversial.  The decision to approve went against the FDA’s advisory committee’s recommendation and occasioned the resignation of three scientists on the committee who protested the action.  

The clinically relevant question of whether Aducanumad is effective in treating Alzheimer Disease remains unanswered.  The question of whether Biogen, the manufacturer, has benefited financially is not in question.

*For patients with established cardiovascular disease, the evidence that statins (the most commonly prescribed pharmaceutical to lower cholesterol) reduce morbidity and mortality is solid.  This is secondary prevention.  The question whether primary prevention (giving a drug to people who have not had any clinical symptoms of heart disease) is complex and subject to some degree of controversy.

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Polypharmacy in Hospice Patients

Hospice doctors generally do not actively target root causes of disease in treating patients—we treat symptoms.  The patients’ drugs are usually max-ed out anyway and further intervention in the underlying cause of patients’ problems is futile.  We usually maintain appropriate medications the patient was taking when admitted to hospice, and tinker with them minimally.  

But sometimes an intervention in the patient’s drug regime is so obvious, and easy, that we do intervene.  For example, a cardiac patient may be running a blood pressure that is too high for the optimal treatment of heart failure.  A simple increase in the dose of an antihypertensive medication may lower the pressure, improve cardiac function, and make the patient more comfortable.  Or adding a low dose steroid to a patient with severe emphysema can do wonders for the comfort of a patient.

Another area ripe for active intervention springs from complicated, extensive drug regimens.  For me It was almost impossible to resist trying to rationalize startlingly burdensome amounts of prescriptions.  Patients routinely came under our care with 20 medications, some of which were actually harmful.  This partially reflects the pharmaceutical industry’s other worldly marketing.  Patients and families often resist stopping a cholesterol lowering drug, for instance, even though the patient is malnourished and weighs less than 90 pounds.  The drug companies have persuaded them that they need to take these medications right to the end of life.  Convincing families and patients of the dangers, and futility, of these drugs can be very difficult, however, as the marketing leaves an imprint that can be impervious to reason.

Paring down the medication burden is most rewarding when patients are on a plethora of psychoactive medications.  It was not unusual, for instance, to encounter patients new to hospice on multiple drugs that can impair consciousness.  The genesis of such  insupportable regimens springs from  the various sites of care that a patient has encountered before coming to hospice: nursing homes, assisted living facilities, emergency rooms, urgent care centers, and hospitals.  Each setting finds a doctor responding to symptoms such as agitation, anxiety, psychosis, and depression by layering on more medications without the careful review of all medications that a good primary care doctor does.

Jean Paul was an 83 year old male with mild to moderate dementia, but, except for some extreme episodes of agitation, which sometimes threatened violence, his wife was able to care for him at home.  A conscientious caretaker, she administered all of his medications as directed.  These had accumulated from episodes of care in multiple settings and, for each of these encounters, new psychoactive drugs, most of them with sedating side effects, were often prescribed without apparent attention to the patient’s entire drug regimen.  

Over the course of a few months, Jean Paul’s wife began to notice a decline in his alertness, and this soon progressed to stuporousness.  It seemed his dementia was precipitously worsening and that it was time for hospice.

In her initial evaluation, his hospice nurse found that Jean Paul was on two antipsychotics, two anti-anxiety pills and two sleeping pills–conscientiously administered by his wife as scheduled.  We slowly tapered all of these drugs, and the patient’s alertness improved weekly.  Finally, after three months, the patient reverted to his level of mental acuity from about four months prior.  Caring for him was still a challenge, but he was no longer appropriate for hospice care.  The hospice team helped to line up agencies to assist his wife with his care, and we discharged him with the promise that  he could always be readmitted to hospice care if clinical deterioration warranted it.