In the early 1980s, I worked at a hospital situated near Chicago’s Boys Town, a neighborhood that had become popular with young gay men.  The AIDS epidemic was just starting, and we knew nothing about the disease.  What caused it, was it transmissible, how could we treat It?  All we knew was that homosexuals admitted with red blotches all over their bodies and a weird pneumonia would almost certainly not leave the hospital upright.

A recent article in the “Annals of Internal Medicine” (September, 2021) illustrates a notable contrast between then and now.

HIV-related mortality has been decreasing since effective therapy was introduced in 1996.  In the period between 1999 and 2004, when therapy was just beginning to get wide distribution, persons entering HIV care had a 14.5% chance of dying in five years.  In the general population the figure was 3.4%.  Between 2011 and 2017, these numbers were 5% and 2.3%.

In the 1990s, AIDS-related deaths accounted for 50,000 deaths annually in the United States (thru 2020, the world-wide death toll is over 36 million).  Mortality has decreased by 37% from 2010 to 2018, and I wonder how many people we treated in the early 1980s would be alive today if we had had the medications we have today.

HIV-AIDS has basically become a chronic disease–manageable in much the way diabetes is.  However, there is much work to be done: 14% of people with HIV in the US remain undiagnosed.

Another common problem in hospice care is dyspnea, the subjective sensation of breathlessness.  Emphysema/bronchitis is the most common cause, although patients with heart failure are also prominent in this category.  The typical story involves a patient with a decades long history of smoking, often with lung cancer.  The lung cancer can be trivial next to the breathing difficulty, and many patients with both conditions are not candidates for thoracic surgery, as they would probably be unable to survive the procedure.  

Patients with end-stage COPD (the medical term, chronic obstructive pulmonary disease) experience breathing difficulties even at rest, or with minimal exertion, such as walking to the toilet.  When referred to hospice, they are already on maximal conventional medical therapy and have often experienced being on a breathing machine, wanting no part of it again.  

However, not all respiratory problems in lung cancer patients are from COPD.  A 69-year-old male with lung cancer and extreme breathlessness came under the care of my team.  Except for the breathlessness, Charles was in much better shape than his medical record would indicate.  He was alert, had a reasonable appetite, and was interacting with family and friends.  He had been told that the cancer had spread and that no more aggressive medical intervention was indicated.  He understood the gravity of his situation, but was desperate to ease his breathing.  Accordingly, he embraced all the therapies his pre-hospice set of physicians had prescribed: oxygen, medications to open his airway and decrease secretions, steroids to reduce inflammation, and generous use of antibiotics.  This is classic treatment for COPD, but Charles had no history of smoking, and was one of about 20 percent of patients with lung cancer who have never smoked.  Nevertheless, his dyspnea was being treated as though he had emphysema.

When I saw the patient, he was friendly, but his ability to converse was attenuated by his respiratory compromise.  On exam, he clearly had a massive accumulation of fluid in the right side of his chest.  In many disease states, fluid can accumulate between the lung and chest wall (a pleural effusion in medical terminology), compressing the lung and rendering it nearly useless.  There are many causes for pleural effusions (infection and heart failure, for instance), but malignancy is a prominent culprit.  In my patient, cancer screamed out as the cause for his effusion.

 I sent Charles to a pulmonologist for a thoracentesis, a fairly simple procedure that involves the insertion of a needle between the ribs with subsequent drainage of the fluid. This resulted in the removal of about three quarts of fluid, and because of the anticipated re-accumulation of the fluid seen in cancer cases, the doctor placed a drain that could be used at home. The patient experienced immediate respiratory relief and no longer required the medications that he was receiving for his “COPD.”  HIs conscientious caretaking wife learned how to manipulate his drain, and drew off a quart of fluid nearly every day.  Charles’s remaining three months of life were filled with short trips to friends and family, a joy for which he had given up hope.  The thoracentesis did not extend his life, but the effect on his quality of life, as his wife later said, was “immeasurable.”

Finding the pleural effusion while examining Charles was no great diagnostic coup.  A good medical student could have detected it.  The fact that it was not addressed before the patient got onto hospice reflects a common problem in our healthcare system–it is often a labyrinthine obstacle course that actually facilitates the neglect of important factors in good care.  Charles had the typical bevy of physicians that often renders care up to the point of referral to hospice.  Each had a role (e.g., administer chemotherapy or radiate a painful bone metastases), but no one was in charge of thinking about lungs.  Or even getting a good history.  The key that sharpened the focus that led to finding his effusion was the fact that he had never smoked, never had asthma.  The drugs he was on would have been appropriate for these conditions, and it is somewhat understandable that doctors just assumed a breathing problem in a person with lung cancer was from emphysema. Understandable,  but wholly unacceptable. .

Patients become eligible for hospice care when both a referring physician and a hospice physician agree that, on average, a patient has less than six months to live.   More than 1.49 million people were hospice beneficiaries in 2017, and this represented 48.2 percent of Medicare decedents.  Even with these large numbers, experts feel hospice services are underutilized. 

Opiod Abuse

In this era of prescription drug abuse the potential for misuse must be kept in mind.  In my ten plus years in hospice work, I ran into only one convincing abuse situation.

A 65-year-old female with lung cancer that had spread to her lymph nodes came under the care of my team.  Norma was a phlegmatic individual, who was pretty matter-of-fact about her pain, but, due to the extent of her disease, we were prescribing narcotics.  She said she lived alone, but hospice personnel, when making routine visits, often encountered several young men whom the patient variously identified as sons, other relatives, or friends.  One of our aides characterized these guys as “shady.”  

The narcotic pill counts nurses monitor carefully kept coming up short.  Even though the patient did not seem to be in much distress, she always said her pain was inadequately controlled.  I kept increasing her doses of morphine and decreasing the intervals between them.  Of course we began to wonder if Norma’s drugs, the “good stuff,” were making their way to the street.  Accordingly, we stopped dispensing the usual month’s supply of narcotics and reassessed every two weeks.  Then we went to once a week.  When the pills still disappeared faster than prescribed, we told the patient that we would give her no more pills than the prescribed amount—if she ran out, we would not supply more drugs until the next scheduled interval.  Soon after we instituted this policy, the patient revoked her hospice care.

Some time ago, I took care of an 80 year old man who underwent surgery for an expanding abdominal aortic aneurysm.  This is a ballooning of the major abdominal blood vessel that carries blood to the abdomen and lower extremities.  At a certain size, the risk for rupture is high, and consequences are grave.  Surgical repair is indicated.

John was a cognitively normal octogenarian prior to the surgery.  His procedure went well technically, but postoperatively he became confused and combative.  In short, he was delirious–he recognized neither his wife nor me.  

This was “postoperative neurocognitive decline,” a condition that, according to a study in the British Journal of Anesthesiology in 2019, afflicts 65% of patients 65 or older after major non-cardiac surgery.  The same study found that 10% of these patients developed long-term cognitive decline.

Research designed to improve outcomes (Journal of the American Medical Association, Internal Medicine, 2020) points to strategies that may improve this important syndrome.  In this study, a family-involved combination of cognitive stimulation and mobilization significantly reduced delirium in both the short and long term.

If you need surgery, you need surgery.  Life threatening conditions such John’s aneurysm certainly justified the risk of surgery.  

The major take home, though, is that an elderly patient (or any patient) should carefully consider therapies besides surgery in an elective situation.  If a hip or knee has gone bad, for instance, perhaps physical therapy, or more intense physical therapy, may provide an acceptable alternative to a prosthetic joint.

John recovered from his delirium after a few days, and his surgery was a success.  But his wife said that he never was quite like his old self. 

Control of pain is a hallmark of hospice care and bestows some of the most satisfying and tangible results in the care of the terminally ill.  I remember hundreds of patients whose pain syndromes were easily controlled with judicious use of narcotics, rendering them comfortable and able to interact with loved ones. 

But treating pain can be very tricky.  With my team, I was taking care of a Vietnam veteran in his home.  “Larry”  had a neck cancer the size of a softball that protruded through his skin, the consequence of years of tobacco use.  Neither chemotherapy nor radiation was any longer effective for him.  His hospice nurse and I monitored his pain compulsively, raising his dose of morphine every few days when he reported inadequate pain control.  Reaching outlandish doses of opioid, I began to consider switching narcotics, as changing to a different narcotic can be quite effective.

Our team chaplain, a Vietnam veteran himself, visited the patient frequently and was taken aback one day when the patient asked him whether God can forgive all things.  Of course the chaplain (AKA “spiritual counselor” in hospice lexicon) gingerly explored this query.  It turned out that the patient felt he had done unspeakable acts in Vietnam, and his anguish with these memories became prominent with his impending demise. 

In the next few weeks, the chaplain talked to him about these issues and assured him of the possibility of redemption.  As the sessions went on, his narcotic requirement decreased dramatically, and I was able to taper him to a more usual dose of morphine, and pain became a non-issue in his last few months of life.  In hospice parlance, we would say Larry had  “spiritual” pain, that is, discomfort with a prominent emotional component.  As Larry’s case shows, the treatment for this involves more than just bludgeoning with narcotics.

Introduction to the Medical Beat

James Whalen, MD

Welcome to the Medical Beat.  I have created this blog out of a desire to share my experiences as a hospice physician.  In addition, I will identify and explicate issues that lay people concerned about healthcare in the United States will find of interest. I have published such articles in the past in periodicals that, frankly, have a modest readership, and I am hoping the magic of the internet will provide me with a larger audience.  These articles were not short on opinion, and I will continue in the same vein.

A word about hospice.  The mission of hospice care is to provide comfort care for the terminally ill.  It is funded primarily by Medicare, with services being delivered mainly in patients’ residences.  Patient care teams consist of a nurse case manager, a physician, nurses who deliver the care, home health care aides, a social worker, and a chaplain.  I was the team physician for a team that cared for patients in homes and institutions like assisted living facilities and nursing homes.  We typically had about 60 patients under our care, with four or five new admissions per week balanced by the same number of deaths.

Dying Well: A Hospice Physician’s Memories and Reflections

One of my most memorable experiences in hospice involved the care of an old man.  Richard was 100 years old, and even though he had no life-threatening illnesses, he had decided that he had had enough of living.  HIs spouse was dead, his friends were dead, his children were dead.  His only close companion was his dog, a mutt, that had been with him for at least a decade.  The dog, with debilitating arthritis, was in worse shape than its master.

The gentleman’s plan was simple: quit eating.  As he became weaker, but still rational and steadfast on his course of action, his dog walker urged him to engage hospice care.  He reluctantly agreed.  

When I first met him, Richard was off-putting, suspicious that I would take measures to extend his life.  Once I convinced him I had no interest other than ensuring his comfort, he became quite friendly, regaling me with memories from an era inaccessible to most people.

When the inevitable outcome of his decision drew near, hospice personnel monitored him for any sign of discomfort.  His dog lay on his lap for the duration, and the patient slipped into unconsciousness.  A hospice Certified Home Health Aide (CHHA) reported that he had a perfect hospice death—he was completely calm, and had no  pain or any other kind of discomfort.  A few minutes after he died, the dog struggled to its feet, rolled off the side of the bed, and staggered to a corner in the bedroom.  Whereupon he lay down and died.