by Amy Cavanaugh – Prior to his diagnosis, my husband was a pain patient due to a car accident. The neurologic damage he sustained caused migraines, tremors, and chronic pain. In order to have a quality of life, Keith avoided opiates and prescription pain medications and relied upon cannabis for pain management.
He preferred cannabis for pain because pain pills tended to put him in a stupor and impaired his driving. The effects were long lasting as well as very addictive. It was easier for him to control his pain and the amount of medication he took with cannabis. Historically, he would quickly build up a tolerance to pain pills. They caused him to hallucinate and when they wore off, he experienced significant mood swings, which affected his relationships. Withdrawal from these pills was complicated and physically grueling. Cannabis assured him a quality of life not offered by pain medications.
He used cannabis even though he had over thirty years of sobriety in Alcoholics Anonymous. Because he was using it as medicine, he did not see this as breaking his sobriety any more than taking any other type of medication. Largely, his cannabis use went without incident. However in 2005, at a routine traffic stop, the officer found a small amount of cannabis in his car. He was arrested and at his attorney’s suggestion, entered a pre-trial intervention (PTI) program, thus avoiding jail time. As part of the PTI, he was required to attend substance abuse classes.
There were several problems with this. For one, as a pain patient, he did not always feel well enough to attend class. However, failure to do so would void the agreement. Secondly, he was treated as an addict. When he explained that he was sober and that cannabis was his medicine, the facilitators took this to mean he was in denial with respect to his addiction. Also, because of the other medications he was on, he would routinely fail the required drug test—not to mention the fact that he was now in chronic pain because he could not use cannabis and did not want to resort to pain pills. Lastly, we lived in South Florida where there was a severe crisis with respect to the abuse of pills and other hard drugs at the time. He was taking up a PTI seat that would have been better used by a sick and suffering addict trying to beat his or her addiction. In short, the program was a waste of time and money and had a negative impact upon his health.
Eventually, the staff stopped trying to fit a square peg into a round hole. His special circumstances were placing undue burdens on the program and the counselors were distracted from those who genuinely needed help with their addictions. As a result the case was dropped, but only after having spent a great deal of time, money, and discomfort in attempting to meet his PTI obligations.
Keith continued to medicate using cannabis with his doctor’s knowledge. While his doctors could not prescribe cannabis, most of them felt that it was preferable to pain pills. At one point he was prescribed Marinol, a synthetic drug that includes some of the chemical properties that are found in the actual cannabis plant. This prescription version was very expensive, generated more side effects, and seemed to be less effective for his symptoms.
In 2010, Keith was diagnosed with leukemia. This meant that he was frequently in and out of the hospital for treatment. This also meant that he was no longer able to medicate with cannabis. Sadly, his oncologists prescribed OxyContin as well as other powerful pain medications. He quickly became addicted and while he did not “doctor shop” or obtain the pills illegally, he always had extras. This was because while in the hospital he took the hospital’s medication, leaving him extras from his prescription at home. As time when on, he needed more and more pills, and the doctors, wanting him to be comfortable, were very liberal in prescribing these pills. They seemed unaware of his increased dependence or of the fact that he was building up a tolerance. When he complained, they would increase the dosage and supplement his extended-release pills with short acting pills for “breakthrough” pain.
It became clear that he was quickly becoming dangerously addicted to these pills. They were controlling him, affecting his mood and, in the end, took his life. Several times, when I was not in the hospital room, he managed to take far more than he had been prescribed. One such incident resulted in him going into respiratory failure and being transferred to ICU for six weeks. Although he survived the overdose, by this time he was dangerously addicted to painkillers and would go to any lengths to get more. He was also starting to experience organ failure from the massive doses of medications he was taking. He was increasingly hostile and agitated. This resulted in his doctors prescribing even more drugs, including tranquilizers and anti-psychotics. His mood shifts made it increasingly difficult to be a caregiver. He was routinely hostile to doctors, nurses, and myself.
While Keith lived for several more months, the side effects of the medications were interfering significantly with his rehabilitation. He always found a way to get more pills, whether he hid them or convinced someone that he needed extras for home. In short, he was acting like an addict. He was incoherent and too drowsy to participate in physical therapy. It was hard for him to swallow, which resulted in the insertion of a feeding tube. His condition continued to worsen and sadly, even though his leukemia was in remission according to his doctors, Keith died on January 3, 2011. The cause of death was respiratory failure related to his dependence on pain medications.
I have a great deal of guilt and remorse that I did not do more. I was unaware of the dangers of these drugs at the time. While I do not blame his doctors, and I understand that they prescribed them out of compassion, I believe that they were unaware of the true nature of these powerful pain medications. I do not think they understood how quickly a chronic pain patient can build up a tolerance, how dangerously addictive pain medications can be, and how difficult it is to withdraw from them.
In recent years, Florida has become known as the OxyContin capital of the world—85% of the Oxycontin in America is prescribed in Florida. Florida’s Attorney General is cracking down on pain clinics and the medical tourism that has sprung up surrounding the unscrupulous prescribing of these pills. Clinics are being shut down and pain clinic owners and doctors working at these clinics are facing criminal charges up to and including first-degree murder. While this initiative is to be commended, it has created some unfortunate consequences for pain patients in Florida.
In general, doctors are becoming increasingly concerned about prescribing these medications. In addition, fewer pharmacies are willing to fill prescriptions because of the associated risk of prosecution and criminal activity surrounding them. Some pharmacies have been forbidden from selling these pills; most recently, two CVS pharmacies lost their right to dispense narcotics because the DEA felt that they were filling an inordinate number of prescriptions. It was not uncommon for me to have to go to four or five pharmacies before I found one that could fill Keith’s prescription. Some pharmacies would not fill the prescription because he was not with me.
In short, the unintended consequences of the crackdown on prescription narcotics, coupled with the fact that Florida does not have therapeutic cannabis laws on its books, has lead to the criminalization of pain. This leaves pain patients with few alternatives. They become dangerously addicted to these medications and quickly build up a tolerance. Doctors fear the consequences of over prescribing narcotic painkillers and this means that pain patients are more likely to seek out illegal means of obtaining pain relief. It has been noted that since the crackdown there has been an increased use of street opiates such as heroin. Ironically, Florida has some of the strictest cannabis laws in the country. Pain patients and caregivers alike are fearful of using cannabis for fear of incarceration. The Attorney General’s office does not seem to understand that many of those abusing readily available pain pills actually started on the road to addiction as pain patients. And in the blink of an eye, they went from patients to addicts. Unfortunately, unless you are a pain patient or a caregiver to one, this would not be apparent to you. Florida’s crackdown on “pill mills” has been considered a success by some, and lawmakers insist that nothing that they have done impacts the ability of legitimate pain patients to medicate their pain.
There is a new uneasiness in patient-doctor communications when the subject of pain management is addressed. Pain cannot be measured like blood pressure or a heart rate; this leaves doctors to trust their patients with respect to the level of pain they experience. Also, not all chronic pain patients look sick; this makes doctors question the validity of their patient’s claims. Even doctors with long standing relationships with patients are less willing to prescribe painkillers for fear of prosecution or malpractice litigation. What is worse is that many patients are now physically dependant on prescription narcotics, making it unlikely that they will ever experience pain relief using less dangerous medications. There are few alternatives. Unlike sixteen other states, Florida does not allow the use of medical cannabis, and judges have rarely agreed to the medical defense argument in presiding over the trials of cannabis patients.
There are more than ten fatal overdoses a day in Florida due to pain pills. There has never been an overdose related to the use of cannabis. Those who do not support the use of cannabis for medical purposes claim that it is a gateway drug or cite its addictive properties. A good example of this widespread misinformation was when Keith was in a hospital in Miami. When I spoke to a medical student there about cannabis use as opposed to narcotics, she looked at me and said, “well cannabis is very addictive.” Amazingly, the hospital’s internet server blocked my access to internet sites discussing the medical use of cannabis. This was the hospital where Keith’s dangerous narcotic addiction first became apparent to me. In response to skeptics, I would argue that today’s gateway to harder drugs is the medicine cabinet. Any dependence due to cannabis pales in comparison to the addictive properties of painkillers. Until you experience life with an addicted patient, it is impossible to comprehend the far-reaching consequences these drugs have upon family, friends, and patients themselves.
As a result of Keith’s death, I have become a vocal advocate for changing Florida’s cannabis laws as well as a spokesperson warning about the dangers of prescription narcotics. When I talk to various groups and elected officials, I explain that, despite what they might think, many people who seek relief at pain clinics, and many who doctor shop and resort to crime in order to obtain painkillers, are actually in pain. I have also sought counseling to deal with the trauma I experienced from trying to be a caregiver to someone in the throes of such an addiction. There were arguments whenever I tried to monitor his dosage. I rarely slept for fear that he would cause himself harm. I was even accused by family members of abuse after he told them false stories of my withholding care or mistreating him—simply because I had attempted to regulate his overuse of painkillers.
In short, it quickly became the pain pills that were controlling his life—not the pain. I am a cancer survivor myself. I did not use cannabis during my treatment because I feared the consequences of being caught for both of us. I also feared losing my job because we are subject to random drug testing at work. Had cannabis been legal, I would have much preferred to medicate with cannabis than the cocktail of pharmaceuticals that I was prescribed.
It is shameful to realize the costs associated with Florida’s pain pill crisis—in terms of crime, treatment, and law enforcement. What is more shameful is the number of lives that have been ruined in the process. The user isn’t the only one affected by dependence on prescription narcotics. Family members, caregivers, and loved ones are also victims. These drugs cause mood swings and personality changes. Loved ones are often forced to become gatekeepers for these medications, which can cause stress, arguments, and even domestic violence. None of these unfortunate by-products occur when patients use cannabis. Cannabis dependence is not physical, there is no drastic shift in the demeanor of the patient, and there is no associated withdrawal.
As grieved as I was about Keith’s death, I often think what life would be like had he survived. He had become hopelessly addicted to narcotics and would stop at nothing to get more. He would have faced a long hard road to detox off the pills. Considering his additional medical problems, I am not sure he would have been able to kick the physical dependence. The price I paid because of cannabis prohibition has been high. I was forced to watch a loved one transform into a monster because of prescription painkillers. I had put my own life on hold to focus on his leukemia treatment, which was in itself successful, only to have him lose his life because of a failed and flawed war on drugs.
Amy Cavanaugh is a 53-year-old retirement plan consultant, a grandmother, and a community leader who was caregiver to a pain patient until he lost his life as a direct result of prescription pain pills, which were prescribed as part of his course of treatment for leukemia.