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.

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.

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.