Another anniversary approaches and again I am reminded of the day the lights first went out for me and my family. None of us could have ever imagined the horror of that day and we would never be the same. We received the devastating news that our eldest child was discovered in his bed after passing in the night from an unintentional overdose. As heartbreaking as that day was, and all the days since, when our youngest son died 6 years later from a Fentanyl patch, it was an unspeakable tragedy and another epic loss for us all to endure.
I often find myself pondering the vast differences in social awareness and treatment that now exist well over a decade later. The same is largely due to countless educational and advocacy efforts that seek a more humanistic approach toward care for substance use disorder. And yet, although much has changed, much still has not. There are compelling efforts to support those with a substance use disorder (SUD) and their families; and, although education is key, there remains serious work necessary to make sure those who suffer receive vital resources they desperately need and deserve.
Those include, but are not limited to, implementation of specific standards based on evidence informed care that consider both substance use and mental health issues combined. Advocates and stake holders are doing diligent work in their local communities and with state and federal legislators to demand true parity in healthcare for those who desperately require services. Families can now find reliable information, support and services from many government and non-profit organizations. These groups provide guidance and education based on standards and newly defined principles of care, methods of collaboration between families and their loved ones, and many invaluable aids and resources to educate and change the way society views people with a substance related disorder.
What has exacerbated the pain felt by families of substance related loss is knowing that there existed a body of knowledge that was scientifically vetted and could have made a significant difference in how treatment was being offered up for our lost loved ones. For countless people in treatment, those known resources, strategies and extended plans of care could have actually helped increase better outcomes and saved lives. The science, research and practices were already being offered during the times when my sons were receiving treatment.
- Why then were those sources not made available to them?
- Why was the treatment model in those days designed to isolate families away from loved ones thereby denying the very tribe that could have helped sustain them in recovery?
The effect of that kind of isolation rendered our sons even more helpless. They returned after months of residential treatment feeling worse than when they began. We saw up close the impact demeaning messaging received in treatment had on them. The marching orders they received in treatment increased shame and stigma and, despite our efforts to support them in recovery, diminished hope left them feeling like recovery was not even possible for them.
It did not help that we were somewhat clueless – believing what we were being told by society and treatment providers. We had been through this once before, and the second time we knew exactly what we were looking for in treatment for our youngest son. Sadly, like many families, we were fed untruths by unscrupulous treatment directors, and found the treatment protocols far less than what was promised. Turns out, our sons experienced revolving doors in detox and residential treatment devoid of any explicable standards of care – – all designed to keep feeding the business of recovery and their collective pockets.
In my advocacy and educational outreach since the passing of my two sons, I have come to understand impediments the boys each encountered during residential treatment. Their physicians were ill equipped as well to truly assist them with recovery from opioid dependency. To say it is painful to know that there was much known and available, however not provided to them in their experience toward recovery, is a profound understatement. Acceptance of all paths to recovery was not even a thing back then. And, denial of utilizing known tools to give them a fighting chance at recovery during treatment and upon exit from the same was unconscionable.
What I am referring to here is now known as harm reduction.
I absolutely acknowledge that the 12-step and abstinence methods to attain recovery have been successful for decades and are still the basis for sustained recovery. And yet, for many, just hearing that that was the only path must have sounded ominous and unattainable. For those individuals, I can only think how encouraging it would have been to hear “there are many paths to recovery.” I often ask myself why the messaging wasn’t an offer of hope, like, “you are still healing and that is okay!” Abstinence was effectively the only message communicated to my sons and any departure from 12-step and total abstinence often rendered them feeling like losers in the recovery community where they placed their trust and sought to belong.
We learned from the boys how unacceptable it was to use medicine assisted treatment. Granted, we knew little about it, but we were eager to have them try. However, they received that directive from treatment and in meetings. That, combined with ridicule, judgment and smacks to their already depleted self-esteem should they even entertain utilizing MAT (medicine assisted treatment) was not helpful to their recovery. The boys, like others dependent on opioids, could have seriously benefited from medicine assisted treatment to give them a fighting chance. What if 12-step abstinence was not the only acceptable path for them at the time? They were convinced that anything less would be deserving of labels like “not being clean” or “dirty”. For them that damaging image was on replay in their minds to further the judgment already felt by their plight.
My experience in observing my sons was that the drug of choice made them “feel normal.” They were not so much getting a high from use as using became like having air to breathe. People do not desire to become dependent on any substance and they certainly do not want to die from self-medicating. For most, that is not the intention for continued use. The perpetual cycle is oftentimes a cycle of pain, (trauma, stressors, and/or depression, etc.) followed by use to relieve the pain, recurring consequences of use, shame, induction of physical pain, etc. on repeat. Deep, deep shame. Both of my sons described in detail about those things being triggers for their use. I have come to realize over the years since their passings that we also represented triggers for them. Even by our support, the constant trigger of not wanting to hurt the people they loved always loomed large. They were not thinking about themselves. There was a pull to be free from the monkey on their backs and the helplessness to change was ominous. Again, I can only imagine the sadness and deep, deep, sorrow they must have felt. We know they worked very hard…..if only they could have understood that their best was always good enough for us.
The good news is that harm reduction tools exist to help break the cycle of using. If sustaining life is the end goal then we cannot minimize the value and effectiveness of these harm reduction resources, tools and principles of care.
Our focus should be on implementing harm reduction programs and providing the resources necessary to reduce overdoses and save precious lives. Being mindful that there is not just one way to get to recovery.
Given that there are alternative options on the way to wellness and recovery, what is the harm in providing for the needs of people going through treatment and recovery?
Today, I can also imagine a time when people who need harm reduction resources can all receive them in their communities. These assists are invaluable, highly recommended, readily accessible and utilized successfully for the treatment of an opioid use disorder.
Harm reduction relies in part on the *following:
- Expanded outreach and education programs on harm reduction, including overdose prevention education
- Access to medications for opioid use disorder (MOUD)
- Expanded access to safe injection sites and syringe service programs
- Expanded access to naloxone, especially targeted distribution in high-risk areas and for individuals; and training and access to the same by families of those with a opioid use disorder
- Drug testing supplies through the use of safe drug checking with fentanyl test strips
- Respect and compassion for all paths to recovery as designed by an individual based on their needs with mindfulness that one size of treatment does not fit all.
- Alternative treatment programs subscribe to CRAFT informed care (Community Reinforcement & Family Treatment) or SMART Recovery (as examples)
(*For more information see Brandeis Opioid Resource Connector, http://opioid-resource-connector.org/harm-reduction/what-is-harm-reduction)
As more customized, comprehensive and family inclusive treatment plans become available and adhere to studied principles of care, patients and families will demand nothing less and the industry will respond in order to survive.
Fortunately, more and more health care providers are learning about medication assisted treatment options and are receiving the education and licensing to distribute these essential medications to patients with OUDs (Opioid Use Disorders). Legislation is underway in many states effectively making it easier for physicians and medical providers to screen, test and provide much needed care to all patients with a substance use disorder.
Breaking the cycles of use with harm reduction aids known to reduce overdoses is necessary to save precious lives. Being mindful that there is not just one way to get to recovery is key. Language matters and how we communicate with our loved ones about that is essential to give them hope. The harm caused by holding back and failure to utilize these essential tools to reduce the horrible effects of long-term detox and end drug overdoses is unconscionable. Not doing so has and continues to be proven deadly. I know that only too well.
Using substances to self-medicate is not a crime. It is a human experience to try to alleviate one’s pain whether it is mental, physical or emotional. What if collectively we error on the humane side of the coin to offer whatever might be helpful. By adopting the mindset that recovery is in fact a process everyone is entitled to it, harm reduction strategies should be made available in every community.
So, you may ask, “what’s the harm?” I have lost half of my family to drug overdoses that could have had a different ending. They died alone. Parents like me have an answer to the question, “what’s the harm?” The answer is in the photos and memories of our departed children, gone way too soon. They did not have the benefit of harm reduction as part of their treatment and recovery from a substance use disorder. And that is just not acceptable.
Our loved ones need to understand that our relationships are safe places to share their truth, any time, any place. Messaging that is judgmental, shaming or demeaning deflates trust, perpetuates greater isolation, which reinforces use and self-loathing that can lead to death. We must turn this message around, and, instead of telling someone what they must do (which does not honor where they are in their treatment/recovery struggles) how about asking, “what can we do for you?”
We are all all still healing from something……and that is okay.
Let’s stop the harm and support life saving measures for everyone who needs the help of harm reduction!
~ D