The current New Yorker (12/05/22) contains a long, thorough exposé of the hospice care industry. The conclusion of the article is that, although hospice care is supposed to be a responsible, caring alternative for people who are close to the end of their lives, the reality for many patients is that in many cases hospice care is a highly profitable racket for corporations that collect tax-payer funded fees for easing patients on their way to the grave. I am not going to reproduce the details of the New Yorker piece. I strongly recommend that you find it and read it. (ed note: “How Hospice Became a For-Profit Hustle”, New Yorker, 12/5/22.)

There are certainly downsides to ending one’s days in the hospital, submitting to intrusive and in many cases fruitless treatment. Such treatment is avoided in hospice care, which is intended for persons with no more than six months of life expectancy. The emphasis in hospice care is providing comfort measures. In many cases, the emphasis becomes “comfort measures only,” and any treatments that actually address disease symptoms are omitted, and replaced with those that are purely palliative. In a sense, hospice care is representative of an aspect of health-care delivery that has already given up on the patient.

What follows is a narrative of the last months of life of one such patient, a woman whom we knew very well and loved very much.

Beverly’s situation

Beverly was a strong, smart, confident, self-reliant woman. She was widowed nine years before her death, but she herself did not give up on life. She deeply loved her family, and she had many friends, not only in the senior living complex where she had a very pleasant apartment, but also in other parts of the country, including the mid-Western community where she grew up. She retained that mid-Western outlook, never totally adopting Eastern ways, despite having lived in the North-East most of her adult life. She was of a somewhat skeptical turn of mind, and was frugal to a fault. She had definite opinions. She loved flowers, bright colors, chocolate, Mozart, and the ocean.

It may seem redundant to say of a woman who died at her age that she had health problems. The fact that she survived to the age of 94-plus is testimony that she managed her health problems quite well. However, the opposing fact, that she did die in the middle of her 95th year, is evidence that at least some of her health problems overcame her. This narrative attempts to chronicle the incidents and the decisions that signaled that transition, from managing her health problems to succumbing to them.

Her underlying health problems

These were fairly common, especially for a person of her age, and were well under control.

Hypertension. Her elevated blood pressure was of long standing, and was mostly well controlled by means of two antihypertensive medications – metoprolol and amlodipine. The first of the two is a beta blocker, which has the effect of diminishing cardiac action, meaning that the contractions of the heart that pump blood through the circulatory system were somewhat diminished. Amlodipine is a calcium-channel blocker, which among other effects decreases the contraction of arteries. The two actions together very effectively lower blood pressure.

Elevated cholesterol. For control of her cholesterol, Beverly took simvastatin, and her cholesterol levels were well-controlled.

Of course, hypertension and high cholesterol are notorious cardiac risk factors. During the many years that Beverly was taking medications to treat those risk factors, she never experienced a cardiac incident – neither a heart attack nor a stroke.

Atrial fibrillation. This is a very common cardiac condition which, in and of itself, is relatively inconsequential. What happens is that the left atrium of the heart isn’t properly doing its job. The left atrium is supposed to accept blood from the pulmonary vasculature and pump that blood into the left ventricle, which in turn pumps that blood into the aorta for distribution throughout the whole arterial system.

In persons with atrial fib, that doesn’t happen as neatly and efficiently as desired. Instead of quickly transferring the blood into the left ventricle, the left atrium dithers. Individual muscle fibers contract, but not in sync with the regular cardiac rhythm. The result is that not all the blood in the atrium is pushed through to the ventricle. The most significant consequence of atrial fib is that the atrium is never emptied – a residue of blood remains in the atrium. Blood pooling in the atrium – or anywhere else, for that matter – has an increased tendency to form clots. And those blood clots can be carried along in the bloodstream and cause significant damage in other parts of the body. They can lodge in narrow places in the coronary arteries and cause heart attacks. Or they can travel to the brain, clog any of the myriad arteries supplying blood to our brains, and cause strokes.

To ward off that eventuality, Beverly was treated with several drugs. One was flecainide, which blocks some electric signals in the heart that can trigger an irregular heartbeat. Flecainide is used for several types of potentially dangerous irregular heartbeats, such as ventricular tachycardia, which is when the ventricle suddenly starts contracting too fast.

Another drug that she was taking for her atrial fibrillation was digoxin, which has a complicated and somewhat controversial history. Digoxin comes from digitalis lanata, the common foxglove, which in itself is poisonous. Or perhaps I should say, “can be poisonous.” The chief effect of digitalis-based drugs is to increase the force of cardiac contraction through its effect on the balance between calcium-, potassium-, and sodium-ion transport in heart muscle cells. Digoxin also has a steadying effect on cardiac rhythm, and for that reason is widely used to treat atrial fibrillation. The use of digitalis drugs in treating disorders of cardiac rhythm goes back nearly 250 years and has been generally accepted throughout the world.

For many years, Beverly also took the anti-coagulant drug, coumadin. Coumadin is the prescription name for warfarin, which is also widely used as rat poison. The dose of coumadin needs to be very closely regulated, which is accomplished by performing a blood test on the patient to measure the time it takes for the blood to clot. That test, prothrombin time (PT), is used to calculate the coumadin dose, so that the clotting time is neither too slow, which would increase the risk of internal bleeding, nor too fast, which would increase the risk of dangerous clot formation.

A couple of years ago, Beverly heard about another anticoagulant from a friend of hers. The particular benefit of that relatively new drug is that its use did not require those frequent PT tests that she had had to schedule. The new drug was Xarelto (rivaroxaban, from Jannsen). Beverly asked her cardiologist about the drug, and he agreed to prescribe it. Xarelto employs a different mechanism to inhibit clot formation. It is a selective inhibitor of an enzyme that is necessary to form blood clots, thus reducing, but not altogether preventing, the blood’s tendency to form clots.

So, up until a few years ago, those were Beverly’s health conditions: hypertension, elevated cholesterol, and a history of atrial fibrillation. Those health conditions were kept under reasonably good control with the aid of those drugs – metoprolol and amlodipine for her hypertension, simvastatin for her elevated cholesterol, and flecainide, digoxin, and Xarelto for her atrial fib.

And then she was diagnosed with idiopathic pulmonary fibrosis. She had been having episodes of shortness of breath. Her physician thought it might be an infection of some kind, resulting in bronchitis or possibly pneumonia, and treated her with antibiotics, without much improving her symptoms. She was tested for sleep apnea and prescribed a CPAP (continuous positive airways pressure) machine to pump air into her lungs, which she had to use every night. This involved wearing a mask over her nose and mouth, and having the CPAP machine in another room in her apartment, with the air hose snaking over the floor. She found it uncomfortable and inconvenient. And then, as her symptoms did not significantly improve, she was ultimately diagnosed with idiopathic pulmonary fibrosis.

Idiopathic pulmonary fibrosis

The word “idiopathic” always arouses misgivings in Yours Truly. When I learned of Beverly’s diagnosis, I immediately checked my bible, Harrison’s Principles of Internal Medicine, and there on page 1499 was where I started to learn about this disease. Idiopathic pulmonary fibrosis (IPF) is classified as an interstitial lung disease, which means that the disease process takes place in the interstices of the lung. Inflammation and deposition of collagen are the features that bring on the symptoms of this disease, those symptoms being shortness of breath, a dry non-productive cough, and crackling noises on the intake of breath. The lungs are essentially choked with the fibrous spread of collagen, such that the alveoli – the tiny structures where the blood absorbs oxygen from the air – are not able to perform their function.

As the term “idiopathic” implies, the cause of this disease is not certain, but the list of likely risk factors, based on association, is familiar. Leading the list is cigarette smoking and exposure to dust of various kinds, as well as exposure to certain solvents. None of those risk factors would explain Beverly’s condition. Aspiration of material into the trachea due to gastroesophageal reflux is also listed a possible risk factor. (What happens in that case is that stuff such as food or drink that we are supposed to swallow goes by mistake into our windpipe and potentially into our lungs, due to a malfunction of the epiglottis, which is supposed to seal off the windpipe when we swallow, to prevent that from happening.)

Neither my Harrison’s nor any other source I consulted had anything the least encouraging to say about treatment. Beverly was of course referred to a pulmonologist by her regular physician, and she shared the results of her initial CT scan with me:

“CLINICAL INDICATION; Patient with cough and phlegm for many years and treated with antibiotics without improvement.  Left lower lobe fibrosis.

TECHNIQUE: Multiple axial images through the chest were acquired with contrast.  Comparison made to chest x-ray from 5/29/14.

FINDINGS;  There is no pulmonary embolus on CT of the chest.  No mediastinal, no axillary and no hilar adenopathy.  The heart size is normal.  There is moderate fibrosis seen scattered throughout the lungs best seen in the peripheries in particular in the lower lobes.  There is otherwise no mass or consolidation seen in the chest.

Limited CT of the upper abdomen demonstrates normal visualized portions of the liver and spleen and the adrenals age normal.

IMPRESSION;  Moderate scarring and fibrosis in the lungs best seen in the lower lobes with no pulmonary embolus and no mass or consolidation seen in the chest.  The fibrosis is likely on the basis of interstitial pulmonary fibrosis as seen on previous chest x-ray from 5/29/14 which will serve as baseline CT to assess progression in the future.”

Beverly was prescribed night-time oxygen, and stayed on that regimen over the next eighteen months or so with not much change in her symptoms. The night-time oxygen tended to dry out her airways, with the result that she had nosebleeds from time to time. Also, she experienced a fall, which was likely not due to any instability on her part, but was caused by a Christmas tree skirt which had been left on the floor of her adult home and not removed when the tree was taken down. The fall caused a fracture of her pelvis which required a few days of hospitalization and a number of sessions in a rehab facility. She had used a walker prior to that accident, but was mostly able to walk erect and quite briskly with the walker. After that fall, she went downhill a bit. She tended to walk in a more bent position, and complained more often of being out of breath.

During this time a couple of drugs were being promoted as being helpful to patients with idiopathic pulmonary fibrosis. These were pirfenidone (Esbriet, from Genentech) and nintedanib (Opev, from Boehringer-Ingelheim). Neither drug promised, or even hinted, that it was a cure for IPF, but the data did suggest that these drugs could significantly slow the progression.

The pulmonologist that Beverly had been seeing prescribed Esbriet for Beverly , and she promptly started taking the drug as prescribed. He had warned her that she would likely not experience any improvement in her breathing, and emphasized that the most benefit she might derive from Esbriet was a delay in the progression of her IPF, which might – just might! – put off the time when she would require full-time oxygen. Beverly was not especially cheered by this prospect, but she added the Esbriet to her daily drug regimen.

As the pulmonologist had told her, there was no improvement in her breathing. Beverly’s response, in spite of the warning, was that “it wasn’t helping.” But then, after a few weeks on Esbriet, she began to experience troubling aches and pains, which she attributed to the drug. She also remembered that the pharmacist had told her that those aches and pains were one of the Esbriet side effects. She continued taking Esbriet a bit longer and then quit.

Enter hospice care

Around this time, Beverly’s pulmonologist came to the conclusion that Beverly had reached the point in her overall condition such that she qualified for hospice care, which would be covered by Medicare. The qualifying factor was that, in his opinion, she had no more than six months to live, and she would likely need more assistance in managing the tasks of daily living. The care would be provided to her at her own home in the retirement community where she has been living. It would initially consist of weekly visits by a nurse, who was “in charge” of her care, and more frequent visits by nursing assistants. The move from her own apartment to a residential hospice would only come when it was no longer practical for her to continue living where she had been living, which entailed going from her apartment to the dining room under her own power.

(A brief aside: a few months before this, Beverly had acquired an electric scooter, which permitted her to travel to the dining room, and, indeed, anywhere on the premises up to and including the bank and the supermarket that were near the residence.)

On the face of it, the plan sounded quite good. She would get assistance and care as needed; she could stay in her pleasant apartment; and she wouldn’t have to pay out of her own pocket – a prospect which appalled her frugal soul. The initial contact between Beverly and the hospice organization was quite satisfactory, but the first contact with the nurse who would be in charge of Beverly’s care was not a bit satisfactory. Beverly found this nurse dictatorial and stiff. For example, she immediately proclaimed that Beverly would need to purchase a hospital bed, because her own comfortable king-sized bed was too low for the nurse or the nursing assistants to do their necessary work if Beverly were ever bed-ridden.

A point of greater disagreement, which would continue to be contentious, was the management of Beverly’s medications. The hospice nurse stated that from then on, Beverly’s medications would be handled by hospice. Beverly saw no reason for this change, since she had been handling her own medications without so much as a glitch, and wanted to continue to do so.

A compromise of sorts was worked out. Beverly would take her medications as she had been, but the three drugs that she had been taking for her atrial fibrillation were discontinued. These were flecainide, Xarelto, and digoxin. One drug was added: morphine sulfate, ostensibly to ease the anxiety Beverly felt when she was short of breath.

The triggering event

Not long after the entrance of hospice care in Beverly’s life, an event took place that hastened her end. She fell in her bathroom in the middle of the night, and managed to pick herself up off the floor and get back into bed. But in the morning she realized that she needed help, and called the desk at her residence to ask for assistance. She was taken to the local hospital, where she was found to have fractured her scapula in the fall. Aside from that fracture, which did not require anything other than supportive bandaging, she was not seriously injured. The decision at the hospital was to release her to residential hospice care, following which perhaps she could go to a residential rehabilitation facility and then be able to go home. But, as we’ll shortly see, it didn’t quite work out that way.

While at the hospice facility, there were more issues about her medications. Beverly had put her various prescribed drugs, as well as some drugs that she occasionally took “as needed,” in a single lidded plastic container with twelve small divided compartments, into each of which she placed one of her medications. On the inside lid of her medications box she had scrupulously drawn a chart identifying each of the meds along with the specifics of dosage. When she was first taken to the hospice facility, a friend brought her the medications box so that she would be able to continue to take them. But hospice would not permit Beverly to take any of the medications from her box. The reason they gave for this stance was that since the medications were not in their original containers, they could not be sure of the dosing instructions or expiration dates. They could not even be sure that the medications were correctly identified in Beverly’s meds box. So the medications were withheld.

Along about the second day at the hospice, Beverly found that she had to urinate with much greater frequency than usual – up to several times in one hour. The hospice staff helped her, of course, but did nothing at all to address what turned out to be a serious urinary tract infection (UTI). After about a day and a half of nearly constant peeing, Beverly insisted that hospice call 911. Which they did, whereupon she was taken to a larger hospital, an excellent academic medical center, where it was found that her UTI had progressed to sepsis.

At this hospital, Beverly’s sepsis and UTI were treated promptly and effectively by means of intravenous antibiotics. After about three days, the question was, where would she go when released from the hospital? The alternatives were: back to residential hospice; back to her apartment with, at least initially, skilled nursing care as needed; or to a residential rehab facility. Beverly by far preferred the residential rehab facility, which she had used previously, when she had the accident resulting in a fractured pelvis. This last option would require that she be evaluated by the rehab facility to make sure that she was in fit condition to go through the rehab process, which required some exercise. And indeed, somewhat to the surprise of her family members, she was deemed sufficiently fit to go through rehab. So, to rehab she went.

The first couple of days in residential rehab went quite well. It seemed likely that after her ten days or so at the rehab facility, she would be able to return to apartment. One of her daughters had established a connection with an organization that provided nursing care for patients in their own homes. Beverly was a bit nervous about this option, mostly on account of what she thought was the exorbitant hourly charge that she would have to pay, even though she could well have afforded it. (It was her mid-western frugality speaking.) But the prospect of going home was agreeable.

Unfortunately, that prospect came to naught. Along about the third day in the rehab facility, she took a distinct turn for the worse. She felt too feeble to engage in the twice-daily exercise sessions, and her breathing became labored. Although the rehab facility was staffed with nurses, and there was a physician on staff, the facility was not an appropriate place to manage a patient whose breathing symptoms were worsening. In fact, the staff at the rehab facility suspected that Beverly might have developed pneumonia, which is always a threat to a patient who is essentially bed-ridden. Consequently, from the rehab facility, Beverly was once again transferred to the hospital where she had been treated for the UTI and sepsis.

At the hospital, it was determined that she did not have pneumonia. What she was experiencing, in fact, was significant worsening of her respiratory capacity. This meant that she would have to be given supplementary oxygen round the clock, via a nasal tube. The hospital physician in charge of her care then contacted her daughters and informed them about Beverly’s status. There was very little chance at this point that her state of health would improve sufficiently to permit her to return to her apartment even with nursing care. And there was a distinct possibility that she would die within a fairly short time; thus the window of time for Beverly’s daughters to come to see her was shrinking. So, indeed, the daughters travelled to Beverly’s bedside.

They found Beverly confined to her bed, receiving intra-nasal oxygen 24 hours a day. She was also attached to an intravenous drip through which she received water, some nourishment, and such of her medications as were considered necessary. For fairly long periods of time, she seemed to be unresponsive, but then at other times she was able to respond to what her daughters were saying to her, albeit in very short phrases. She also was subject to coughing fits that her daughters found difficult to watch.

During this time there had been discussion, mostly between Beverly’s daughters, as to Beverly’s destination when (and if!) she was discharged from the hospital. One possibility was an assisted living facility that was linked with the independent living facility where Beverly had been dwelling. This option appeared to offer one single advantage – residents were transported to and from the dining room rather than having to get there under their own steam. However, the living quarters were not nearly as pleasant as Beverly’s own apartment. A second option was for Beverly to remain in her own apartment with skilled nursing “as needed,” which might mean that nurses would be present round the clock. A problem with this option was that it would require a place for the nurses to be able to sleep during the night shift, which in Beverly’s apartment would be quite difficult. A third option was residential hospice care. The hospice facility maintained several individual homes where hospice patients could live in a non-hospital setting, but with whatever medical assistance they needed, and helped by care-givers who could attend to the patient’s needs. And yet a fourth option was for Beverly to remain in the hospital, although in a different wing, but with her care in the hands of the hospice organization. This meant that the supervising physician would be the same person who would have supervised her care had she gone to a residential hospice facility, and the nursing would be provided by hospice nurses.

To discuss these options, Beverly’s two daughters had a meeting with a very pleasant hospice representative who explained the particulars of hospice care, although in a distinctly positive and persuasive manner.

As it happened, Beverly’s daughters did not need to come to any conclusion, because Beverly died that same day.

Could a different course of care have led to a significantly different ending?

Of course, it is impossible to do any more than speculate, but as I look at the sequence of events, there is plenty to speculate about.

I question whether Beverly’s care under her pulmonologist was optimal. Other than ordering the CPAP device to counter Beverly’s supposed sleep apnea, he did very little to address her breathing symptoms. He did not, for example, suggest a bronchodilator to see if it would relieve her shortness of breath. He was not the person who suggested the drug Esbriet to see if it would at least slow down the progression of her pulmonary fibrosis symptoms. It was I who came across the early discussions of that drug and suggested to Beverly that she ask her pulmonologist to prescribe it. And when Beverly decided that “it wasn’t helping,” he didn’t remind her that what Esbriet might do is slow down the progression of her condition, but would not reverse or improve her symptoms. So Beverly quit taking it. Then I came across very preliminary research that showed that metformin (a drug used in type 2 diabetes) actually reversed fibrosis in mice. I suggested to Beverly that she ask about metformin, which would have to be prescribed off-label. Her pulmonologist refused, but her primary care physician agreed to give it a try, on the chance – no doubt fairly small – that it might actually help. She had just begun to take it when the precipitating event took place that ultimately led to her death.

And it was her pulmonologist who made the decision to switch her to hospice care, thus taking himself out of the picture.

Was hospice care really necessary at that stage in Beverly’s life? The accepted view is that a change from curative to palliative care is appropriate when the patient has been diagnosed with a really serious illness that is causing unbearable suffering and frequent visits to the emergency department. An additional qualifying factor is whether caring for the patient is causing consequential problems to the caregiver’s life. Although Beverly had indeed been diagnosed with a serious illness with no known cure, she was not experiencing unbearable suffering. Her visits to the ER were unrelated to her illness, but mostly due to accidents. And she was quite competently managing her own life, with no particular strain on the lives of anyone else. She was having her meals in the residence’s dining room, transporting herself there on her little electric scooter. She socialized with several friends fairly frequently, going out to dinner at local restaurants. When her daughters came to visit, she went with them on pleasant outings. It is certainly true that she was short of breath, tired easily, and limited in her mobility, but the transition to hospice care, which she did not initiate, appeared to be a surrender.

The distinction between palliative care and curative care may be ambiguous. Is a treatment that actually addresses and minimizes symptoms palliative or curative? The increasing doses of morphine that Beverly was receiving were certainly not curative. They were considered palliative in that they may have relieved Beverly’s anxiety about her shortness of breath. But morphine, like other opiates, actually reduces respiration, thereby adding to Beverly’s shortness of breath. The morphine seems to have had the effect of easing her end, but also speeding it.

Also, the requirement that a patient have no more than six month of life expectancy is more an administrative rule than a medical guideline. Hospice is normally covered by Medicare, and, according to Gretchen Brown, the chief executive of a very large hospice organization, Medicare sometimes raises questions when patients are in hospice care longer than six months. According to Brown, “We really can’t pay for something that’s going to cause someone to live longer than six months.” Thus, there seems to be an institutional motivation to avoid measures that would tend to prolong a patient’s life.

Dylan Thomas said: “Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.” Hospice seems to say the exact opposite. As for me, I’m definitely more in Dylan Thomas’s camp than I am a hospice advocate.

* * * * * *

The next episode in the Doc Gumshoe papers will, I hope, contain more positive news on such subjects as slowing the progression of Alzheimer’s disease and the possibility of a universal flu vaccine. In the meantime to all citizens of Gumshoe Nation, stay well, with no need for either hospice care or the alternatives. And do please keep the comments and queries coming! Best to all, Michael Jorrin (aka Doc Gumshoe)

[ed note: Michael Jorrin, who I dubbed “Doc Gumshoe” many years ago, is a longtime medical writer (not a doctor) and shares his commentary with Gumshoe readers once or twice a month. He does not generally write about the investment prospects of topics he covers, but has agreed to our trading restrictions.  Past Doc Gumshoe columns are available here.]