The range of what we think and do is limited by what we fail to notice.R. D. Laing
And because we fail to notice that we fail to notice, there is little we can do to change;
until we notice how failing to notice shapes our thoughts and deeds.
A few items I’ve seen circulating have got me thinking about the water we swim in. (Or, the invisible assumptions we operate within that inhibit our imagination and limit our options.)
First, this personal essay by a First Nations chief about learning to embrace harm reduction. It’s a few years old, but it’s getting a lot of new shares. The essay speaks to the struggle to stay engaged with loved ones when they are addicted and unable to achieve stable recovery. His willingness to tolerate not having answers and solutions resonates strongly with me.
So . . . what’s the invisible assumption that is reacted to? It’s the framing of a binary choice between an abstinence expectation and unconditional love.
However, to me, I think he subtly points toward maintaining hope for full, sustained recovery AND figuring out how to maintain engagement and unconditional love.
For me, harm reduction is akin to unconditional love. We do not want our loved ones to harm themselves, but we know that we cannot resolve their historical trauma for them. We can only be there for them when they are ready to take steps on their own healing journeys. Unconditional love is not easy – it is exceptionally difficult. Until I learn another way, I will do my best to express unconditional love to my family, friends and loved ones.
So . . . I don’t think we have to reject viewing abstinence as the ideal/desired outcome for severe SUD to embrace harm reduction for people whose addictive disease is still active. (And, I don’t think Chief Kelly would disagree.)
Second, I was reviewing epidemiological data to prepare a proposal and found this informational page from the Recovery Research Institute.
People who read this blog know that I am skeptical of the diseases of despair narrative. (Though, my some of my co-bloggers disagree with me.)
I think most people would be surprised by the epidemiological data. The differences by income, race, and education are not what most people would expect, though there are 2 findings that fit current narratives:
- Drug use disorders are more prevalent in adults with lower annual family income, though those differences diminish a little if we combine alcohol use disorders and drug use disorders. (To me sequencing would be important here. A severe drug use disorder is likely to interfere with income, and criminalization of drug possession/sale further interferes with income.)
- Alcohol and drug use disorders are more prevalent in native american adults.
The report also does not distinguish between severe, moderate and mild SUDs.
In any case, I think much of the epidemiological data provides reasons to question the notion that SUDs are largely a product of the social conditions we often attribute it to.
Third, there was (another) very sad tweet from someone losing a friend to an overdose and appealing for more access to naloxone.
At this point in the crisis, we’ve all seen far too many of these kinds of posts.
(Let me insert here that I’m a believer in naloxone provision. I’ve been an advocate for OTC naloxone and was on the state’s workgroup to implement the standing order. Since then, I’ve been involved in advocacy for medicaid to cover these OTC naloxone purchases. At Dawn Farm, we had naloxone in all dwellings, gave away naloxone to high risk clients, and gave prescriptions to all clients with an OUD. So . . . nothing in this post should be understood as criticism of naloxone access.)
I wondered if this person’s friend had any previous naloxone rescues. This led me to wonder what portion of people who die by OD had a previous naloxone rescue.
This got me thinking about defibrillators. Imagine we were talking about a person who died of a heart attack and had been previously saved (maybe even on multiple occasions) by public space automatic defibrillators.
Under these circumstances, would our attention be on him not being rescued by a defibrillator?
I suspect it wouldn’t. I suspect our attention would be on the fact that this friend was not successfully engaged into a cardiac care system of adequate quality, intensity and duration to treat his illness, restore global health, and prevent his death.
Finally, The New England Journal of Medicine recently published a perspective piece about treating addiction as a terminal illness.
When I saw the title, I expected to hate it, but it’s much more thoughtful than I anticipated. It’s about a patient with endocarditis (an infection of a heart valve that is frequently caused by injection drug use) who rejects a valve replacement and chooses hospice.
She acknowledges failures of the system and suggests that it shouldn’t have come to this decision. She closes with these thoughts.
For many people, the choice to forgo curative therapy and accept only palliative care arises from an assessment of their perceived quality of life with treatment and the quality of death they desire. Although some also have coexisting depression or other mental illness, such diagnoses don’t necessarily interfere with their capacity to refuse treatments. Ms. A. retained that capacity, but though that part was ethically clear, I still struggle with her decision. Ms. A. deserved to live. Choosing what her death would look like was her right, but I wish she’d had better options, and I regret that respecting her final choice was the only dignity I could offer. Such is the inevitable result of treating addiction as a disease in a system that is not equipped to do so successfully, in a society that often pays mere lip service to the idea that people with substance use disorders need care instead of judgment.Treating Addiction as a Terminal Disease
Of course, I do not know much about Ms. A, but I have serious reservations the assessment that her decisional capacity as sound. I don’t imagine I’d advocate for any involuntary treatment, but I can’t imagine accepting this as a sound decision.
The piece goes to great lengths to provide the context for Ms. A’s decision. Ms. A’s despair makes a lot of sense in this context, but that context should evoke our horror. There are treatments that could have not just prevented the endocarditis, but provided an opportunity for flourishing.
How many endocarditis patients receive anything resembling the kind of care an addicted physician gets? Conversely, how many get discharged from hospitals with opioids for pain management and no meaningful treatment?
This only makes sense and seems compassionate if we have to ask, “What the hell is water?”