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. .