Partnering With Parents
It’s been more than 20 years since I received a telephone call from a mother begging me to see her 25-year-old daughter. She claimed her daughter was moribund without morphine. I consented and the mother brought to me one of the most beautiful women you will ever see. In fact, the girl was part of the local Hollywood scene vying for bit parts and a shot at stardom. Unfortunately, she had severe pain “all over” and had been given a diagnosis of fibromyalgia by her referring physicians. The daughter also stated she could only function when taking morphine. In those early years of pain treatment, the very existence of fibromyalgia was questioned, and opioid treatment was in its infancy. California had just passed its “Intractable Pain Act,” which coincided with the insistence of patients and physicians who rightly stated that some severe incurable patients needed opioids. Since fibromyalgia wasn’t accepted as a disease at that time, I believed that patients like my budding starlet simply had the early manifestations of a common collagen or rheumatologic disease; lupus, scleroderma, or rheumatoid arthritis. Lyme disease hadn’t yet made the scene and couldn’t be found in any textbook.
My work-up was standard: joint examination, range-of-motion testing, rheumatoid panel, serum cortisol, and erythrocyte sedimentation rate. The young lady had lots of positive findings including a very high serum cortisol level and some abnormal immunologic markers. Just as mother and daughter claimed, morphine in this patient seemed heaven-sent. Over the next few years she was able to work, marry, and carry on like a young lady is supposed to do. I saw her regularly, but, unfortunately, I wasn’t smart enough to demand that her mother remain involved with her care. In fact, after the initial couple of visits, I didn’t see the mother for more than 15 years. One day out of the blue, the mother popped into my office unannounced and claimed her daughter was becoming so mentally impaired and incompetent that she now had to live in the mother’s house and be cared for like a child. This was surprising to me, because the patient always came to the clinic with a husband or girlfriend, and I never picked up on any serious mental deterioration. A few weeks later, following the mother’s tirade, there came a lawyer’s “love letter” in the mail blaming me for the patient’s deteriorated mental state.
All of this occurred before we knew anything about glial cell activation, neuroinflammation, central pain, hormonal dysfunction, and loss of brain matter with severe chronic pain.1-3 In those early years of pain treatment, I was simply not aware that mental deterioration and a demented state may result from severe chronic pain. In retrospect, the high serum cortisol level when the girl was first admitted to my clinic should have been a tip-off, since mental deterioration is a long known complication of hypercortisolemia.4
Besides this case of mental deterioration, I had lots of other young and middle-aged adults who I began to treat more than 20 years ago. This allowed me to witness another unexpected complication of undertreated severe chronic pain—suicide. More than one parent blamed me for undertreatment and the cause of the suicide. In fact, they were right in most cases, because I belonged to the “restrict medication” club. Doctors who are too stingy with medication and decide to undertreat severe chronic pain need to expect the midnight hostile call from a grieving parent blaming them for their child’s suicide. All told, my early experiences in pain treatment taught me that families must be involved with opioid treatment of severe chronic pain. Single adults, particularly young ones, must have parents who are knowledgeable and are closely involved in the treatment process unless no parent exists or the parent is otherwise incapable of being involved.
By involved, I mean, first and foremost, being educated about the long-term consequences of severe pain, and the pros and cons of the medications that must be used, especially opioids. It’s difficult for patients, parents, and society to accept that suicide and mental deterioration are part and parcel of undertreated severe, chronic pain. We can’t waltz around this basic fact, and parents must know the facts. Once I gain the parent’s confidence, they let me know they already intuitively believe that their child is extremely ill and most likely will deteriorate and live a shortened life. A frank discussion allows the parents to prepare for providing custodial or assisted care for their pain-inflicted child should the need arise.
Today, I won’t treat a single young adult without one or more parents accompanying the patient for the first several visits. Once the parent understands the goals and limitations of pain treatment and the possible mental deterioration that may accompany severe chronic pain, they become your best therapeutic partner. If and when mental deterioration sets in, the parents are prepared to step in. I personally have some ongoing private talks with parents to give them an update on the facts as I know them. I give them my cell phone number, but I’m amazed how seldom they call.
Initially, I was somewhat intimidated and afraid to make confidants of parents, but it’s turned out terrifically. I don’t worry much about medication misuse, overdose, or auto accidents. Also, I know the patient will get a decent diet and a roof over their head. Mom and Pop are watching and understand they need to step in whenever there’s a problem.
Admittedly, the observations of a single doctor do not make an epidemiologic survey, but I sense there appears to be a lot more young adult pain conditions: fibromyalgia, Lyme disease, diabetes, headaches, and genetic diseases. Perhaps I’m just more aware, but the time is here when we sometimes have to treat young adults with potent medications, particularly opioids. It’s a sad occurrence, but when we have to embark on such treatments, we can use a partner and that’s called a parent.