EDITOR’S NOTE: This article originally was published March 1, 2018 in the RACmonitor e-News
A look back on the difficult end to a cherished friend’s life.
“Larry only has a couple of weeks to live,” read the Facebook message from the wife of one of my oldest living friends. “He wants to talk to you.”
I first met Larry in second grade. We became fast friends through elementary school and junior and senior high school. We were in Cub Scouts together and later, he was my assistant patrol leader in Boy Scout Troop 6. He was always by my side, whispering advice on how to pitch a pup tent faster than any other patrol. He was there by my side during our orienteering course in the wilderness, using only a map and compass to plot our path back to camp. I was the patrol leader; Larry was the coach.
A true entrepreneur, Larry skipped college and went on to form a diving school and later owned a sprawling horse ranch in Colorado. He once delivered a horse to a mutual friend who was living in Chicago at the time; it was an arduous journey from Colorado to Illinois, pulling a horse trailer and stopping frequency to walk the horse.
Larry did call to explain, in the fashion of Mark Twain before him, that news about his demise was greatly exaggerated. We had a great conversation, him telling me things about our life as kids that will stay with me forever. He also told me that the docs had his prognosis all wrong. He had inhaled some toxic fumes, so it wasn’t COPD (chronic obstructive pulmonary disease).
The night of his birthday last month, he told friends at dinner that he was worried about my pneumonia, as I had been diagnosed the day before. But I was too tired to call him and wish him happy birthday.
But then, the day after his birthday, on Jan. 12, Larry died.
Having read the insightful stories in the RACmonitor news about palliative care by Michael Salvatore, MD, I reached out to Dr. Salvatore for comfort as much as to gain a more personal perspective on palliative care, especially in the light of my friend’s death.
Below are highlights of that interview:
- Buck: My oldest living friend died earlier this month from COPD. He had been suffering for quite some time. He had to use a walker. He was quite active, so I can imagine what a burden it must have been for him to travel from Northern California to Southern California to see his grandkids. His wife, in telling me of his death, said that he was in constant pain when walking in the house – pain acerbated by his diabetes.
Dr. Salvatore: Patients, especially men, will try to maintain the roles they perceived they have in their lives, e.g., husband, father, and grandfather.
The way you provide hope in hopeless situations is by giving the patient and caretaker what is called predictive information. This information allows them to develop a coping plan. So I take out your appendix and I tell you that it will hurt very much for 24 hours, then it will rapidly abate. You anticipate a day of pain and recovery and you steel yourself to cope with the pain until tomorrow. This reduces the stress of not knowing how long the pain will last. You need to set expectations so patients and family know what they will have to cope with.
Diabetic pain is a torture, and difficult to manage. Certainly, end-stage COPD could make adequate pain control problematic, but the doctor and the patient need to have frank and perhaps uncomfortable conversations of what can be done and what the patient wants. Sometimes, at the end, treatment of the disease and comforting the symptoms of the disease can be in conflict, and a choice must be made.
- Buck: In the latter stages of his COPD, Larry would tire easily and sleep for long periods of time. He was, she said, losing ground.
Dr. Salvatore: Very common because:
- You do not feel pain when you sleep. I had an aged classics professor who called sleep his River Lethe
- The work of breathing in end-stage COPD can be as physically fatiguing as running – patients need physical restoration.
- Physically, he would need to sleep more to deal with the unrelenting stresses – knowing you are dying, leaving your loved ones, losing control, and losing your identity
- Depressed people sleep more, and if your friend wasn’t a little depressed in his situation, he would be crazy.
- Buck: According to his wife, Larry inhaled some fine dust particles while vacuuming their large birdcage. This caused what she described as chemical pneumonia. The chemical pneumonia triggered the COPD. Dr. Salvatore: When you only have enough lung left to breathe standing still, when you have no lung reserve left – then any insult – hot air, cold air, dusty air, bird-y air – will cause problems.
- Buck: His doctor, however, according to Larry’s wife, said that it was only a matter of time before he would die. The doctor had said the same about Larry’s bronchitis. Larry had been a smoker (I remember that from our high school days), but he had quit, according to his wife, 30 years ago. At what point in his treating the COPD might the doctor have suggested palliative care? Dr. Salvatore: It is a doctor’s responsibility to make a diagnosis (what is wrong) and a prognosis (what is going to happen). The doctor was obligated to foretell the trajectory of the disease; this is the predictive information your friend needed to cope with his decline (e.g., it will get continually worse for so many months and then you will die). It is an obligation to tell patients that they are dying! Palliative care was needed to palliate a disease that could no longer be ameliorated. Smokers vary on the lung injury spectrum based on their genetic make-up, which might make them more susceptible to the toxic effects of cigarette smoke. Also, no two smokers smoke the same – inhale versus inhale and hold, filtered versus unfiltered, one pack in 16 hours versus one pack in eight hours, one pack versus more than one pack a day, occupational lung hazards, air pollution, secondhand smoke on top of firsthand smoke, the younger you start, the worse it is – you get the picture.
- Buck: For a physician to make that kind of prognosis almost seems immoral without suggesting palliative care. Dr. Salvatore: Unnecessary suffering is unethical and inhuman, but many doctors do not see relief of suffering as their problem to deal with – and worse yet, many do not see it as a problem.
- Buck: Does the physician have any moral or ethical responsibility to make such a recommendation? Dr. Salvatore: What could be worse to feel that you are dying, and no one is telling you that you are? It is an ethical and human responsibility to tell patients the facts, and if you do not know the facts, this same responsibility obligates you to place them under the care of someone who will find the facts and tell them to the patient.
- Buck: Larry, according to his wife, wanted to stay at home and cope, using his walker. Can palliative care be administered at home? (Such a naïve question, I’m sure.)
Dr. Salvatore: All palliative care starts on outpatients, and as they deteriorate, the palliative care will become hospice care. The idea of palliative care is to start when only a little is needed and then increase as the disease worsens – and to keep the patient in their home as long as possible, even allowing for a comfortable death in their home when feasible.
- Buck: What/where is the intersection between palliative care and hospice care? Dr. Salvatore: Hospice is a subset of palliative care, the last stage of palliative care. So not all palliative care is hospice, but all hospice is palliative care. Ideally, palliative care should morph into hospice. In a chronic process, bringing in hospice at the end without preceding palliative care is, while no better than hospice, a failure of suffering relief. Many patients and some doctors think palliative care is hospice. The patients can be forgiven their ignorance; the physicians cannot.
About Michael Salvatore, MD
Dr. Michael Salvatore was a pulmonary medicine/critical care physician for 35 years. Since 2012 he has been the physician advisor and medical director of the palliative care team at Beebe Healthcare in Delaware. After earning his MD at the University of Arizona, he trained in internal medicine and PULM/CCM at Duke University. Dr. Salvatore is a member of the RACmonitor editorial board.