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 shifting our efforts is to make the prevention of intense suffering a top priority of governance. 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 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, where I am also a member of the EA Greece team. My background is in molecular biological research.
jonleighton
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.
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.
Improving access to effective medication to treat cluster (“suicide”) headaches
OPIS is an EA-associated think-and-do tank focused on the prevention of intense suffering as an ethical priority (https://www.preventsuffering.org/). We are addressing a few specific causes of suffering and, at a more meta level, working to promote compassionate ethics in governance.
One of our main current areas of focus is cluster headaches, a form of trigeminal autonomic cephalalgia and one of the most painful conditions known to medicine, often driving patients to suicide (https://www.preventsuffering.org/cluster-headaches/). The agony they cause is often compared to having a red hot ice pick driven though the eye into the brain. Attacks typically last one hour and repeat several times a day. Patients are often woken up several times during the night by attacks, and they go to extremes, including banging their head against the wall and punching their head, to try to distract themselves from the severe pain. About 85% of patients have episodic clusters lasting 1-3 months, occurring once or twice a year at the same time of year, during which they have daily recurrences at the frequency mentioned; the other 15% have chronic clusters that can last for years, often with multiple attacks per day and without a single day’s break. Although they only affect about 1 in 1000 people, the severity of the pain dramatically increases the scale of the problem.
A large number of patient reports attest to the efficacy of certain indoleamines and related compounds with hallucinogenic properties, including psilocybin, LSD and DMT, both in aborting attacks and in preventing entire episodes. Research reports based on survey results indicate that these compounds can be more effective than standard medical treatments, which are far from satisfactory. But legal restrictions and lack of sufficient information among doctors and patients mean that patients often suffer needlessly.
OPIS is working to improve access to effective treatments through an initiative to change government regulations in some key countries, and improve the information available to patients and doctors.
I propose to give a brief talk about the ethical priority of treating extreme pain, and provide more details about this specific condition and how we are tackling the subject and the challenges faced. I hope to inspire more EAs to consider supporting or becoming active in this and related cause areas.
Apologies for replying only now. We are happy to dedicate funds to a specific cause area when requested, such as advocacy for pain relief, which in any case represents much of our current focus. Even more general advocacy to promote the ethic of non-suffering in policy-making and decision-making invariably puts much of the emphasis on human suffering and pain relief.
There are clearly differences in how people respond to opioids, both in terms of efficacy of pain relief and severity of side effects, and for some chronic pain patients there are other treatments that may be preferable. But for a substantial fraction of chronic pain patients, opioids appear to be the only medication that is sufficiently effective, justifying any side effects. Note also that these Cochrane studies refer only to non-cancer pain, whereas for terminal cancer patients—one of the main categories of pain patients addressed by the Lancet study—side effects that affect daily functioning may be even less important than pain relief.
JC, thanks a lot for your comments. The short article I linked to summarised the situation but you’re right that it doesn’t provide additional sources. I would, however, maintain that much of the concerns about opioid misuse do come from the US, even though the context is different, which is why it is so important to show the weakness of the arguments made linking justified prescriptions and misuse. Two white papers by the Alliance for the Treatment of Intractable Pain are useful and contain many references:
Also this article by noted pain patient advocate Thomas Kline, MD:
https://medium.com/@ThomasKlineMD/opioid-addiction-is-it-rare-or-not-abaa3722714
See also this article in The Guardian:
The situation of opioid misuse in West Africa hasn’t received nearly as much scrutiny. But as is the case in the US, it’s critical to distinguish between the use of street drugs and medically appropriate prescriptions, and to be careful about drawing any putative link between them. There are already tight controls on the import of most opioids, including morphine, and government restrictions are generally stricter than necessary to prevent diversion. The Economist article refers to codeine, a weak opioid that isn’t as strictly regulated as more powerful opioids, and tramadol, which is a medically used opioid that, as far as I know, is not included in UN conventions and in many countries has not been subjected to the same domestic regulations as other opioids, making it easier to import and distribute for non-medical uses. So this is a public health issue with socioeconomic causes as well, and there are different potential strategies to address it, including more balanced regulations for the drugs in question. But there is no good reason to think that making morphine widely available within the medical system under controlled conditions would contribute in any significant way to this problem.
The fact that the lack of access to morphine in most of the world has been meticulously studied and highlighted in a major Lancet article as a huge public health problem in itself, and the lack of evidence that balanced domestic policies to make morphine available to those in need result in diversion to street use, should give sufficient cover to EAs and any others who want to help address this issue. Things are changing far too slowly, and if there were issues along the way that emerged in some countries they could be corrected. Even if the EA movement were to embrace this issue as a major cause area, I would see the risk of “devastating” consequences as being extremely low.
I am unaware of any major flow-through effects, other than allowing chronic pain patients to function and work, and reducing stress and suffering in family members and others supporting those in pain.
I would urge them to contact me to have a conversation about the specific ways we would use funding in support of local efforts. Contact and donation info are on the OPIS website: http://www.preventsuffering.org/
Yes, sure. For patients in the end stages of terminal diseases such as cancer or inadequately treated AIDS who are in severe pain, dependence is clearly not an issue. For others, short-term treatment with opioids has been shown in studies to lead to dependence in only a small fraction of cases. And for those with chronic pain, dependence on medication is arguably much less of a concern than for them to suffer.
The opioid crisis in the US and the irrational response by the authorities to drastically limit opioid prescriptions have been devastating to chronic pain patients, often suddenly deprived of a medication they have used stably for years that allowed them to function. It has also created the false impression that prescribing opioids to patients in need is a significant cause of drug deaths. Although overprescribing of pain medications in the past likely contributed to overuse and dependence, most of the overdoses today are due to street heroin and illegally imported fentanyl, a powerful drug which is also used to lace heroin.
There are also means to limit the risk of prescribed morphine getting into the wrong hands, such as distributing it in diluted oral form, which is of much less use to those with drug dependence—this has been done successfully in Uganda. So although opioids need to be managed carefully and precautions taken so that only those who need it can obtain it, there is ample evidence for how morphine can be provided to patients in need without reasonable grounds for opiophobia.
16 Oct: This short article sums up the irrationality of opiophobia: https://www.cato.org/publications/commentary/opioid-crisis-not-helped-panic
As you know, Lee, your post increased our interest (OPIS; http://www.preventsuffering.org) in this issue as a potentially tractable cause area, and after the Lancet Commission report a year ago, we became engaged with the issue through our UN Human Rights Council event and advocacy (http://www.preventsuffering.org/pain/). We have since been contacted by palliative care associations about collaborating, and so I prepared a document with some new thoughts and an analysis of promoting morphine access as a potentially cost-effective EA cause area for those interested in relieving some of the worst human suffering. The document is here: http://www.preventsuffering.org/wp-content/uploads/2018/10/Relieving-extreme-physical-pain-in-humans-–-an-opportunity-for-effective-funding.pdf I will also create a new EA Forum post to elicit feedback.
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