The dangers of palliative care in modern Western medicine
Joe, as I shall call him here, underwent open-heart surgery at St. Joseph’s Hospital in Marshfield, Wisconsin on June 30, 2005. The operation was a success; however, the next day Joe suffered a massive stroke and physicians predicted a bleak outcome. According to them, Joe would never again recognize his loved ones and he would be bedridden for the rest of his life. Furthermore, the doctors couldn’t say how long the rest of his life might be—weeks, months or years. Joe is 54 years old.
Joe’s doctor recommended removing the ventilator that was helping him breathe. His family was asked to decide if Joe should have a feeding tube. “Yes, of course,” they adamantly replied. The doctor then asked whether they were just saying that because of what the pope had said about nutrition and hydration. Apparently, the doctor was referring to Pope John Paul II’s clear and repeated statements that tube-feeding and hydration are ordinary and morally obligatory means to sustain life; and that no “quality of life” judgment could justify euthanasia by omission. Since Joe and his family are Catholics, and since Joe was in a Catholic hospital, the doctor’s question seemed strange.
At this point, Joe’s daughter called me because I sometimes serve as a patient advocate. The family needed help sorting out the medical and moral issues. On July 7, the whole family gathered and I listened to their questions and concerns. The main issue, at that time, was the ventilator. I suggested that it would be appropriate to attempt to wean Joe from the ventilator with the understanding that its use would be continued if necessary.
I encouraged the family not to give up. Where there is life, there is hope.
A few days later, Joe’s son-in-law informed me that Joe was breathing on his own, but was still mostly unresponsive. I became uneasy when told that Joe had a “pain patch” and was also being given morphine twice a day. “The patch might be one reason he is not responsive,” I said. “Get it removed!”
The Duragesic pain patch delivers a continuous dose of the potent narcotic fentanyl. The drug’s manufacturer, Janssen, L.P., issued an “Important Drug Warning” to healthcare professionals in June 2005. That letter stated: “DURAGESIC is ONLY for use in patients who are already tolerant to opioid [refers to narcotics like morphine] therapy… Use in nonopioid tolerant patients may lead to fatal respiratory depression” (emphasis in original). In other words, it can cause a person like Joe to stop breathing. The letter also warned that Duragesic should not be used for the management of post-operative pain nor in patients with impaired consciousness. Duragesic, particularly in combination with other central nervous system depressants, such as morphine, can cause profound sedation or coma.
What were this man’s chances of waking up and responding to people while he was receiving fentanyl and morphine? I don’t know the answer. However, once the patch was removed, Joe started showing signs of awareness.
He was subsequently moved to a nursing home in Stevens Point, Wisconsin. In mid-August, he was admitted to the hospital to have his seizure medication adjusted. There it was discovered that he was not suffering seizures, but rather a system-wide infection was causing him to shake. Joe was treated with intravenous antibiotics. His daughter speculates that the massive amount of IV fluids flushed any residual drugs out of her dad’s system. Infections often cause sleepiness and sluggishness, so treating the infection may have perked him up.
Whatever happened, Joe started making remarkable progress. He recognized and named his loved ones. He began speaking and joking, proving that his renowned sense of humor was intact. He also told his wife that he loves her.
When Joe was well enough, he returned to the nursing home where amazed nurses called his progress “a miracle.” Perhaps it is, but I believe that many patients with brain damage would have similar outcomes if given enough time and appropriate care. In other words, physicians’ dire predictions become self-fulfilling prophecies when patients are denied life-sustaining care or sedated to the point that progress is obscured or prevented.
Now Joe only receives Tylenol for pain.Physical and speech therapy are producing good results. His feeding tube was removed and he traverses the nursing home hallway with a walker. Likewise, Joe’s speech is constantly improving. Before the stroke he spoke very plain English, but Joe is learning and expanding his vocabulary—using ‘big words’ his family never heard him use. The most exciting milestone for Joe was his first visit home for Thanksgiving dinner.
Joe is among the fortunate ones who have families that fight for their lives—without their intervention, would he have progressed so quickly? Probably not.
Julie Grimstad, executive director of Life Is Worth Living, Inc., is a writer, speaker and patient advocate.