How to Die Well - Part 1
ACCESS ALL AREAS
I recently asked a doctor (with a broad range of experience in palliative and intensive care) what he felt should be the focus of discussion around end of life treatment. “Access to hospice care,” was his unequivocal answer.
that is the most pressing issue in palliative care…”
This is an example of a proximal concern. It’s nuts and bolts. It’s service provision. It’s, “have we hired enough nurses to professionally administer pain and anxiolytic medication to the population who are currently dying?”. It does not concern itself with the metaphysics of life and death, and all its attendant ethical considerations.
This doctor is not a hardhead, nor does he lack the compassion or sensibility to understand that palliative care rightly takes in a much larger suite of human experience than what modern medicine can conventionally provide. He is merely concerned that such proximal concerns are being increasingly conflated with more abstract concerns relating to topics like euthanasia. As far as he is concerned, both discussions are very important, but the conversations must be delineated if we are to reach the societal consensus necessary to help people to die better and with optimal autonomy. It is my suspicion that his sentiments are shared by a significant proportion of the medical community and we would be keen to hear from medical professionals who either agree or disagree.
People have always been born and and people have always died. the circle of life is not exactly new. So why is this conversation important now?
The demographic deck is stacked top heavy, and the Baby Boomers know it. Many Boomers are entering the epoch of life where chronic and debilitating illnesses cluster - they are increasingly encountering cancerous, neurodegenerative, metabolic and cardiovascular conditions from which they are not ever likely to ostensibly ‘recover’. A quick glance at an actuary table demonstrates why conversations around what constitutes optimal and bespoke palliative care become exponentially more pressing with every passing year of life.
INDULGING IN THE ABSTRACT
So there you have, broadly speaking, two very distinct conversations:
1. A proximal, societal discussion about the quality of end of life
2. A more abstract societal discussion about the ethics surrounding the end of life.
Nuts and Bolts vs ‘Woo Woo’
So which conversation is more important?
Well, neither. They are different. They are both very important, and neither is subordinate to the other. What are perhaps two more pressing questions:
Which conversation is easier to attend to?
Which conversation is easier to pay attention to?
COMPARISONS of COMPLEXITY
So, to the first point,
which conversation is easier to attend to?
In my opinion, the proximal one relating access to hospice care is the clear answer.
This does not mean that this is somehow an easy fix for any society that wants to seriously think about how well prepared they are for the end of life treatment of a significant portion of their citizens. It’s a very complex, Apollonian discussion that will take a great deal of sorting out. What various areas of expertise are truly required to provide best possible care? Is it best thought of on a national or regional scale? What do the epidemiologists say? What are the fiscal realities of widespread hospice care for the tax payer? So, how complex is it to attend to this issue?
Well then, how can it be the easier of the two problems to attend to if it is very complex? Because everything is relative, and whilst the logistical discussion around optimal palliative care provision is very complex, the conversation around the ethics of the end of life is…
A proper discussion about the ethics surrounding end of life bumps us up against (amongst many other gargantuan issues) the hard problem of consciousness and the concept of free will.
We are not likely to have completely sorted out these various mysteries of the universe incumbent in a complete philosophical understanding of such matters as they pertain to life and death by the time you and yours need professional care at the end of life.
It will take an unknown amount of time before that conversation is concluded - if ever.
To die pain free and with no more than an acceptable amount of depression, anxiety and fear of death - and for this level of care to be professionally administered if you want it to be, regardless of your socio-economic status. How do we create a society where this is a reality?
This would be my opening conversational gambit. I would be quietly confident that a societal conversation on such a topic would be very fruitful, because through conversation, differences of opinion could be ironed out and broad consensus could be reached. Regardless of ideological, political or spiritual persuasion, it would transpire we all agreed more than we disagreed about what constitutes a good death - especially when you consider the inverse of my proposition, something which no sane and reasonable person wants for anyone:
To die in pain, with excessive amounts of depression and anxiety, and full of existential angst, with no access to professional support which might alleviate that suffering.
But is it likely that this conversation will be able to capture sufficient public attention in mainstream media to achieve its ends?
Because, its sister conversation (the more abstract conversation around the ethics of the end of life) is absolutely primed to monopolise a great deal of the necessary attention, and in a way that could be socially radioactive.
ATTENTION CAPTURE :
WHICH CONVERSATION IS GOING TO TREND?
If it offends,
In the late 80s the New Yorker magazine ran an expose into the more sordid aspects of local TV news, and in doing so popularised the saying, “if it bleeds it leads,” which seemed to be the first rule of that unscrupulous cadre.
Besides a few remaining oases of excellence, the tacit equivalent axiom for today’s ‘click bait’ journalists would seem to be
If it offends - it trends.
Extremities are more predictable, so the unholy marriage of media algorithms coded to maximise the most extreme and easily offended (and therefore most predictable) version of yourself, and opportunistic journalists enculturated and incentivised by advertising paymasters to maximise ‘clicks’, means offensive and outrageous conversations get selected for. You still have to click on the content, and in this way the blood of a polarised and polarising media is on all our hands.
Imagine two headlines. Heuristically speaking, which one is likely to get more attention?
Local Hospital Hosts Productive Meeting between Palliative Care Physicians, Politicians and Town Planners to Discuss 30-Year Hospice Care Provision Plan for Region
Pro-Lifer DESTROYS Dumb Protestor in Hospital Debate!
The first headline appeals to our cortical regions, the higher-order executive components of the brain. These are the anatomically more superficial bits of your brain that help with the executive functions - think of it as the part of your brain that stops you eating chocolate cake in favour of doing your taxes. It helps you pay attention to all the boring stuff, like Headline One.
The second headline taps a more ancient part of the human brain - it ploughs your emotional centres - an altogether deeper and more fruitful furrow. Its attention is grabbed when things are outrageous, like the latter headline.
When it comes to capturing attention,
Divisive, low-ball commentary is not exactly new - tabloid-esque media has been with us in one form or another since the Gutenberg Press - but what is new, is its synergy with artificial narrow intelligence - the kind of intelligence that can subtly and perniciously groom you into thinking a certain way. If you think this is scare-mongering, and believe that you and society at large are fairly resilient to this greater level of manipulation, then perhaps you are simply ignorant of how hackable an animal you might actually be.
This has implications for nuanced discussions around palliative care, because a one-eyed pursuit of longevity by physicians can leave a vacuum of unmet treatment needs, and what flows in to fill this space isn’t always helpful or empirical. We need to be able to have nuanced discussions and can no longer rely on mainstream media to act as reasonable compères.
DOCTORS = DEATH DENIERS?
If you have had occasion to put small children to bed who don’t want to go to bed, you have seen the phenomena of ‘sleep repudiation’ in all its glory. Note the distinction from sleep rejection. Sleep rejection is characterised by a child expressing the opinion that they don’t think they need to go to sleep now, whereas sleep repudiation is characterised by a child embodying the opinion that sleep isn’t really a thing, and even if it was, it no longer seems to apply to them, so they may as well just keep playing, thank you very much.
(If, only if, the little sweethearts, they knew that the choice wasn’t so much between sleep and wake but between bed and you throwing them out of the window whilst humming this tune)*
From the outside, medics can be seen to embody a type of death repudiation. This is not a criticism, but merely an observation. Perhaps it is impossible to go about your day-to-day work as a physician without raging against the dying of the light…
To illustrate, if you are in a motorway pile-up, and are haemorrhaging blood out of both legs whilst the fire brigade try to cut you out of the wreckage, of course you want the resuscitationist to be totally focussed on keeping you alive. You might have a case for a malpractice suit if she instead had heaved a sigh, sat down in the mangled passenger seat and said, “I mean, what is death really anyway?”
Perhaps the propriety of death repudiation is highly contextual.
We are all shuffling towards death. I don’t mean this in a cynical or fatalist way, but rather it is more of a technical observation. We reach a sort of physiological apogee some time in the early part of adulthood and then it’s a game of mitigating entropy from then on. The medical community is in this way a victim of its own success, because as it has disproportionately increased lifespan with regard to healthspan, it has created an environment where end of life decisions are more ambiguous and the expectation for the seeming pursuit of immortality is as much a culture of the patients as the doctors.
THE FRUITS OF DENIAL
In much the same way as the alchemists failed in their venture to give us gold and instead gave us the ‘booby prize’ of modern chemistry, it could be said that modern medicine has so far failed in its attempts to give us immortality but has instead given us the booby prize of greatly increased life and health span. This is an absolutely massive achievement that needs to be roundly acknowledged; had the prevailing culture adopted a stance on immortality that it was a foolish and elusive thing to pursue, then we might not have made the gains that we did. However, perhaps for Millenia, perhaps forever, the massive ‘lag time truth’ is that we are stuck with mortality. So, that being said, here are some facts:
We are all extraordinarily likely to die.
Psychedelics have shown great scientific promise in ameliorating some of most profound morbidity a dying person is likely to face.
The multidisciplinary troupe of professionals charged with manning the last station of our lives, therefore, need to know about that.
The next installment of How to Die Well will outline how psychedelics can help in a palliative setting. You can listen to our conversation about this topic with Dr Martin Williams here.