This article expands and clarifies on the last article in this series entitled “The Benzodiazepine Issue” that published on Dec. 25, 2019 and accessible at moultrienews.com/opioid_crisis. The benzodiazepine issue is complex and I received a wide variety of responses, some of which were concerns that I will address in this and future articles. In this article we are addressing the first of those concerns; the issue of “Informed Consent.”
Benzodiazepines or “Benzos” for short are fairly new; the first was Thorazine in the 1950’s. Valium arrived in the 1960’s and many others such as Xanax, Ativan, Alprazolam and Klonopin have followed. Benzos are referred to as psychotropic drugs as they affect a person’s mental state and are commonly prescribed for anxiety, insomnia, as a muscle relaxant, an anti-seizure agent and as anesthesia for minor surgical procedures. It is well known that these are highly addictive drugs that can lead to physical dependency. Improper withdrawal, like alcohol, can be fatal. When used in conjunction with other drugs such as opiates or alcohol the likelihood of a fatal overdose increases as much as 10 times, according to The National Institute on Drug Abuse. Getting off of Benzos can bring on withdrawal symptoms that are completely debilitating and last for years.
“Informed Consent,” is permission granted from a patient to a doctor for treatment with full knowledge of possible consequences, risks and benefits. Every individual has the right to know what risks are involved in undergoing or foregoing medical treatment and the right to make meaningful decisions based on a full understanding of those risks. Valid informed consent must include three major elements: Disclosure of the information, competency of the patient (or surrogate) to make the decision and that the decision is voluntary.
An article by Dr. Christy Huff, a cardiologist and co-founder of the Benzodiazepine Information Coalition gives a clearer perspective on this issue in the context of Benzos. She writes:
“My experience is far from unique. The unfortunate truth is that patients prescribed benzodiazepines are not receiving true informed consent. While many were cautioned about the risk of addiction, the overwhelming majority of patients in online support groups for benzodiazepine withdrawal report having never been warned about the possibility of physical dependence, severe withdrawal and neurological injury. In fact, in a 2013 survey of the largest online forum, Benzobuddies, almost 60% of the respondents reported receiving no warning at all from their provider about the potential side effects and risks of benzodiazepines.
I’ve been asked many times how this could have happened to me. After all, I’m a doctor — I should have known. The truth is, physicians are not adequately trained about the possible adverse effects of benzodiazepines. As a medical student and internal medicine resident, I was taught about benzodiazepines’ potential for addiction and abuse, their increased risk of overdose in combination with alcohol and opioids, to prescribe them only “short term” (which I now know is less than two to four weeks) and to use caution in the elderly. But what happened to me and so many others, was never mentioned as a possibility. As I found out the hard way, the medical profession is grossly uneducated about the potential harms of this drug class.
Unfortunately, in the past few years, I’ve been forced to learn what could fill volumes about benzodiazepines through my research, participation in online support forums and my advocacy work. While not a comprehensive list of the risks, here are the things I wish I had known before ever accepting a prescription for a benzodiazepine:
- Physical dependence on benzodiazepines can develop in a matter of days or weeks. This can and often does, occur in the absence of abuse or addiction. Physical dependence and addiction are two distinct entities. Being warned only about the addictive nature of benzodiazepines gave me a false sense of security, since I took my medication only as prescribed.
- Withdrawal symptoms can be intolerable and disabling in spite of a very slow taper over the course of years. The worst cases may become bedridden (or suffer severe symptoms such as akathisia), unable to do basic self-care tasks most people take for granted such as showering or cooking. Not everyone will experience symptoms to this extreme, but currently there is no research to predict which patients will have problems.
- Even commonly prescribed or “low doses” of benzodiazepines can be problematic. I took the lowest dose of Xanax possible (even lower than my prescribed dose), but I developed major problems nonetheless. The bottom line is, there is no such thing as a “safe” dose of any benzodiazepine.
- Benzodiazepine adverse effects, tolerance and withdrawal can create a myriad of symptoms which are often confused with many chronic health conditions. Many patients, myself included, visit numerous doctors in search of an answer to the their problems, only to later discover the cause is their prescribed benzodiazepine.
- Perhaps the most disturbing thing is that these drugs can cause long-term brain damage, resulting in a protracted withdrawal syndrome that can persist years and may even be permanent. How many people would sign up for a benzodiazepine prescription if they understood this risk?
Fully informed consent regarding benzodiazepines is not happening in current practice, and that needs to change. The first step in solving the problem is ensuring that prescribers are fully aware of the risks. To start, all prescribers of benzodiazepines should educate themselves by reading the Ashton Manual, which contains information about benzodiazepine withdrawal and safe taper protocols. They should also read the prescribing guidelines for benzodiazepines (such as Pennsylvania and New York City), as well as websites containing educational material on benzodiazepines (such as Benzodiazepine Information Coalition, World Benzodiazepine Awareness Day and the Alliance for Benzodiazepine Best Practices).
Once educated, prescribers have a responsibility to fully inform their patients of the risks of benzodiazepines – it’s simply not enough to expect a patient to read the drug sheet handed to them at the pharmacy.
These drugs are so dangerous that written consent administered by the prescriber should be required before patients receive a prescription. This is currently not mandatory, but as more patients are recognizing they have been harmed by benzodiazepines, the push for this is growing. Informed consent bills initiated by benzodiazepine-injured patients are currently in progress in several states including Massachusetts, New Jersey and Connecticut.
Patients deserve to be given all the information needed to make the best decisions regarding their health: Anything less is unacceptable. Knowing that lack of adequate informed consent about these drugs is a gaping hole in current medical practice, I authored a consent form for benzodiazepine prescription, which contains everything I wish I’d been told before being given that Xanax prescription. Using this form has the potential to reduce patient suffering and save lives, so I am urging all prescribers to integrate this tool into their clinical practice.”
Huff’s post complete with links can be accessed at moultrienews.com/opioid_crisis.
I spoke with Jim, a local ER and Urgent Care doctor for many years. “Few cases of inappropriate prescribing of Benzos by doctors are malicious,” he said. “There are still some pill mills out there, but it isn’t the norm. What I see happen more often is the result of doctors wanting to make patients happy and keep them coming back. You can consult with a patient about getting counseling, diet, exercise and start them on lower risk medications, but when they keep coming back and saying nothing will work for them but Xanax the doctor may give in and prescribe a low dosage. The next thing you know the patient is back saying they are having trouble getting through the day and next they are taking the medication four times a day. Then tolerance builds up and dosages get increased. Then side effects develop that need to be addressed."
“As to informed consent, the doctor is on the front line and responsibility lies with them rather than with the pharmacies. Pharmacies don’t like to question prescriptions because when they do the prescribing doctor often reacts with hostility. The pharmaceutical manufacturers publish much of the literature out there, but there are apps available that give more detailed information on these drugs.”
“It is very hard to discern when a patient is trying to game the system and when there is a genuine need. The days when you could spend half an hour interviewing and helping patients make the best decisions are gone. Because in today’s medical environment doctors are often overwhelmed by the number of patients they have to see there just isn’t the time for the level of individualized attention there used to be.”
In conclusion, it seems that the old adage “buyer beware” is certainly appropriate here. In future articles we are going to address the stigma surrounding addictive drug usage, the difference between physical dependency and addiction and discuss withdrawal in greater detail.
- Informed consent: https://www.ama-assn.org/delivering-care/ethics/informed-consent
- 2013 survey: https://adaa.org/sites/default/files/Pittman121.pdf
- Physical dependence and addiction as two distinct entities: https://www.drugabuse.gov/publications/principles-drug-addiction-treatment-research-based-guide-third-edition/frequently-asked-questions/there-difference-between-physical-dependence
- Withdrawal symptoms: https://www.benzoinfo.com/2017/10/09/common-benzodiazepine-withdrawal-post-withdrawal-symptoms
- Akathisia: https://www.kevinmd.com/blog/2018/11/dont-miss-this-adverse-drug-reaction-when-tapering-benzodiazepines.html
- Symptoms: https://www.benzoinfo.com/2018/04/21/existing-estimates-what-percentage-of-people-experience-benzodiazepine-withdrawal
- Low doses: https://www.benzoinfo.com/2016/09/05/what-is-a-low-dose
- Chronic health conditions: https://www.benzoinfo.com/2018/04/28/how-benzodiazepines-mimic-chronic-illness-and-what-to-do-about-it
- Brain damage: https://www.psychologytoday.com/us/blog/side-effects/201011/brain-damage-benzodiazepines-the-troubling-facts-risks-and-history-minor
- Protracted withdrawal syndrome: https://www.benzo.org.uk/pws04.htm
- Ashton Manual: https://www.benzo.org.uk/manual
- Pennsylvania: https://www.health.pa.gov/topics/Documents/Opioids/PA Guidelines on Benzo Prescribing.pdf
- New York City: https://www1.nyc.gov/assets/doh/downloads/pdf/chi/chi-35-2.pdf
- Benzodiazepine Information Coalition, World Benzodiazepine Awareness Day: https://www.benzoinfo.com
- Alliance for Benzodiazepine Best Practices: https://benzoreform.org
- Massachusetts bill: https://malegislature.gov/Bills/190/H3594
- New Jersey bill: https://www.tapinto.net/towns/belmar-slash-lake-como/articles/kean-introduces-bill-to-raise-awareness-of-risks-of-benzodiazepines
- Connecticut bill: https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=HB-5645
- Consent form for benzodiazepine prescription: http://www.benzoinfo.com/2018/10/16/informed-consent