I run OPIS, a think-and-do tank I founded that’s dedicated to the prevention of intense suffering of all sentient beings. We’ve been focused on improving access to controlled substances (morphine and psychedelics) for the effective treatment of severe pain (terminal cancer and cluster headaches, respectively) and, to a lesser extent through postings and talks, on ending factory farming. Our larger goal and where we are putting more of our efforts is in promoting compassionate ethics in governmental decision-making to prioritise the prevention of intense suffering. I’m the author of two books on ethics, The Battle for Compassion: Ethics in an Apathetic Universe (2011) and my new book, The Tango of Ethics: Intuition, Rationality and the Prevention of Suffering (January 2023). I’ve also co-organised a workshop in the Swiss Alps for suffering-focused EAs from around Europe. I’m officially based in Switzerland but spend much of my time in Greece. My background is in molecular biological research.
jonleighton
I think it’s great that you did this analysis. There’s a strong tendency, including among many health economists and rationalists, to want to use one single metric to cover everything that matters and aggregate all the data to get a single number (utility, wellbeing, suffering...). This makes it much easier to make decisions, since you’re just comparing potential outcomes based on single numbers. The problem is that not everything can be added together in a way that is both meaningful and non-arbitrary, even if you introduce different weightings. In this case, while aggregating different intensities of suffering to get a single number can simplify things, it loses critical information. So focusing on something more narrowly defined and maintaining a degree of granularity in the analysis ensures that the worst suffering isn’t neglected against a background of more widespread but less intense suffering.
If you put all the existing evidence together – which is much more than just those two studies – even with the risks of bias, it really is overwhelming. See, for example, Fig. 2 in our policy paper, based on a paper by Schindler et al. https://www.preventsuffering.org/wp-content/uploads/2020/11/Legalising-Access-to-Psilocybin-for-Cluster-Headaches-Policy-Paper.pdf, and also some of the patient testimonials. The usual standards for determining the effectiveness of new medications are understandably more rigorous than for other kinds of situations, but in the case of cluster headaches, the huge number of patient reports claiming the efficacy of psychedelics (while other substances like cannabis are generally ineffective), including chronic cluster headaches that end after a few doses of psychedelics, essentially excludes the possibility that there is no causal relationship. And the extreme pain means that patients have the right to access them even if there were any doubts. We’re actually preparing a case series for submission, with a Zurich-based neurologist who can legally prescribe psychedelics, on the results obtained with her patients.
There’s a real need for large clinical trials. There have been a few on psilocybin and LSD as preventatives. The big obstacles are recruiting a sufficient number of patients and obtaining funding to study substances that aren’t directly patentable. Demonstrating the efficacy of DMT as an abortive compared to placebo could be done on very few patients and reach high statistical significance. Demonstrating greater efficacy than Sumatriptan—a standard abortive—would be more difficult, as the latter is also fast-acting and effective in the short term. Sumatriptan is widely believed among patients to cause rebound attacks and to lose effectiveness over time, so a proper comparative study would probably need to follow patients over a period of months. I don’t think that DMT would have to be legal (e.g. for personal use) to be studied as a controlled substance—just authorisation would be needed.
OPIS suffering survey: a request for your help!
There is this write-up from 2020: https://www.medicusmundi.ch/de/advocacy/publikationen/mms-bulletin/palliativversorgung/advocacy-fuer-palliativmedizin-und-pflege-ein-weltweiter-querschnitt/how-a-local-champion-can-bring-the-government-on-board
More recent updates in our December 2022 newsletter: https://mailchi.mp/106e8af12947/opis-december-13469449
Yes, I agree. Asking people who don’t suffer from a condition to evaluate it is already an imprecise approach, and it just doesn’t work for extreme suffering. I think self-evaluation is essential. A study on people with cluster headaches who had also experienced other sources of pain, including childbirth, kidney stones and gunshot wounds, provides a means of normalising the scale by re-setting the meaning of 10 (we reproduced the graph in our policy paper on cluster headaches). The measure was pain intensity, but the same approach could be used for suffering. Qualitative descriptors of different pain/suffering levels can help ensure that people mean the same thing in their self-evaluations. In my opinion, time tradeoffs can be helpful for ranking intensities of suffering, but I don’t think they can substitute for direct intensity evaluations.
Thanks for writing this report, which is really well researched!
One point I would stress, which you also hinted at, is the inadequacy of current metrics, including the WELLBY (though a definite improvement on the DALY and QALY), to properly account for the reality of extreme suffering. While 0-10 scales are common and useful, they impose the compression of a complex phenomenon onto a superficially linear scale that then gets treated as such, as if the different points on the scale represent equivalent increases in a cardinal unit. Pain and suffering that are so severe as to prompt suicidal ideations and attempts have a qualitatively distinct aspect that isn’t captured by such scales – probably not even if we interpreted them as being logarithmic. For this reason, reducing pain or suffering from a true 10 to an 8 is probably far more significant than reducing it from a 3 to a 1 – even if the timescale of the extreme suffering is much shorter.
For example, someone with cluster headaches might find the attacks on the verge of unbearability while experiencing them, similar to torture. A temporary drop in SWB during the attacks—even if it were to zero—wouldn’t sufficiently reflect the degree of agony. Furthermore, during attack-free periods, life satisfaction might be evaluated as relatively high and not reflect the suffering experienced during attacks.
Since interventions to reduce pain and other causes of suffering are ultimately aimed at reducing the phenomenon of suffering itself, there’s a strong case for new metrics to measure it more directly than the WELLBY does. In their 2017 paper, the Lancet Commission on Palliative Care and Pain Relief proposed the SALY (Suffering-Adjusted Life-Year). In my new book The Tango of Ethics, I suggested that the SALY could be reduced to YLS (Years Lived with Suffering), and I also proposed two additional metrics that could better account for the reality of severe and extreme suffering without being diluted by aggregation with moderate suffering: “Years Lived with Severe Suffering (YLSS) could capture suffering at the level of approximately 7⁄10 and above. A separate metric called Days Lived with Extreme Suffering (DLES) could capture the most urgent suffering at the level of approximately 9⁄10 and above, and properly account for it even when experienced on short timescales.” These metrics, and especially the latter, would ensure that the most severe suffering is not overlooked in public health interventions, and would allow us to better track states that have the highest urgency.
Of course, using additional metrics would complicate cost-effectiveness comparisons of interventions that have been evaluated in other terms, such as improved life satisfaction. But this would not be a valid reason not to use them, especially as parallel measures. If we want to address suffering so extreme that it causes people to kill themselves to escape it, we need to track it more directly.
A couple of specific points regarding interventions:
-Paying for the purchase of opioids could indeed help relieve the burden to healthcare systems in low-income countries in cases where palliative care and access to morphine are already a reality, but cost remains a barrier even after other obstacles have been lowered (logistics, training, regulatory…). Note that, because they are subject to international control, opioids in these countries are usually purchased centrally through the government and not by independent healthcare institutions.
-Advocacy for the legal provision of psychedelics to treat cluster headaches and some related conditions, which we are already engaged in, might be considered more cost-effective according to a metric that attributes particular importance to extreme pain/suffering, even if we can only provide a rough estimate of the impact of such campaigns.
(One minor point: it wasn’t clear to me why going from 0 to 10 on a pain scale represents an 11-point change.)
Thanks, Jamie. Yes, I entirely agree, assuming of course that this epistemology encompasses subjective experience. In other places I consistently refer to the combination of compassion and rationality as core values. In fact, one could argue that compassion is a consequence of rationality if one takes into account the content of all current and potential subjective experiences/mind states as the most relevant part of reality to act upon, and one also takes a metaphysically accurate view of personal identity. In this post I didn’t focus on rationality because it is already a strong given within the EA community (although I dispute the rationality of some widely held principles), whereas concern for suffering is more variable.
The definition I use is caring about suffering – others’ and also one’s own – and being motivated to prevent or alleviate it.
New book: The Tango of Ethics: Intuition, Rationality and the Prevention of Suffering
Promoting compassionate longtermism
For what it’s worth, I’m on the list and closely connected to EA :)
Thanks for this link, Simon. Some cluster headache patients do report trying things like “Sinus Plumber” (which contains capsaicin), but I don’t see it being widely recommended as a treatment. I’m not sure how many patient support groups are even aware of the study cited in this video, and among those patients who try capsaicin, it seems the expectation is that it might work rapidly as an abortive, rather than as a preventative following several applications. I will follow up on this with some patient groups I’m in contact with.
Thanks! I wrote a description of the storyboard, used my network to find an illustrator who does animation, worked closely with her to get the images right, found the right music and then edited the video myself, mainly using Final Cut.
OPIS policy paper: Legalising access to psilocybin for the treatment of cluster headaches
So, results of the small-scale migraine study I mentioned above were actually published in June and showed a significant effect of psilocybin on migraines. “Preliminary Analysis of the Sustained Effects of a Single Low Oral Dose of Psilocybin in Migraine Headache”, https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13854 The results were also shown at a cluster headache conference I spoke at over the weekend: a single low dose of psilocybin cut migraine frequency in half. Pretty encouraging!
My guess is that it’s indeed mainly the stigma of illegal drugs and not wanting to lose credibility as an organisation by promoting alternative treatments from that category that haven’t been approved. Probably not status quo bias as there’s enthusiasm about new official treatments. Some cluster headache patients themselves may be reluctant to try illegal drugs, but desperation and the encouragement of other patients in the community reduce the psychological barriers.
Thanks! There is actually an RCT for psilocybin in migraines as well, being conducted by the same Yale researcher, Emmanuelle Schindler - results should even be presented this month, I believe. Migraine patient associations are larger and have more clout, so I expect positive results to get traction and make talk of psilocybin and other controlled substances more mainstream. Until now, migraine organisations and even one major cluster headache association (OUCH) tend to avoid talk of controlled substances.
There was a small trial that was recently completed at Yale. The administrative hurdles are greater, including DEA approval in the US, but certainly not insurmountable. It might be easier in some other countries with more permissive laws and where psychedelics have already been legally prescribed, like Canada and Switzerland, but approval is still necessary.