“So... at work you know I do a lot about end-of-life care. And the more I learn, the more I realise that it’s important that we talk about what you would both want if something really bad happened, and you weren’t able to tell us.”

There was a brief moment’s silence as my parents looked at each other, before beginning to talk. The conversations that followed were typical of my family: somewhat blunt, quite honest, but always skirting around some of the more deeper issues. The type of unresolved issues that can make end of life decisions often treacherous.

However, after a few drinks, and some fairly frank admissions, the discussion remained just that: a discussion. I felt like I wanted to let them chew on it for a while, so we went back to our normal lives. But I had managed to breach the subject of death with my parents. Yet it was abstract, wishful, and felt like a remote and distant issue.

That was, until my father encountered some health issues. Health issues that convinced him that this wasn’t just a strange topic for dinner conversation, but something that should be carefully considered, and committed to.

Over time, the conversations returned to the topic of planning ahead, and how to practically document those decisions. We began to explore the options around contemporary advance care planning. I soon realised this – despite feeling like a fairly routine process – would reveal itself to be a complicated, ever-changing and somewhat archaic experience, that left me with a sense of unease, but ultimately feeling driven to find a better solution.

On the run up to Christmas last year, my father was buying presents in a shop when he was hit with a sudden wave of nausea and vertigo. He escaped to the store’s staircase to be violently sick. Though a short-lived but unpleasant experience, he was most surprised at the rapidity of his turn. As a fit 68-year old, with a clean health record, it came as a bit of a shock. Subsequent check-ups with the GP and referrals to the hospital revealed the culprit: a heart murmur. This was not a complete surprise to him, as he had been told about it in his early-20s, but had given it no thought for the 40 years since. But he was now approaching 70, with his body carrying the wear and tear of a life well-lived. With further discussions with surgeons, it was agreed he would undergo surgery and have his aortic valve replaced.

The first I knew about it all of this was when he called me up, out of the blue. He quickly picked up our previous conversation from the dinner table:

“Remember when we spoke about what we’d want to plan in advance, in case something happened? Well I think we should sit down and get it organised. I need to go in for surgery.”

My own heart skipped a beat as he told me. I assumed the worst. He quickly established that rather than something immediately life-threatening, this was a routine operation. And in fact, rather than fill him with fear, it seemed to give him purpose to the question of what he would want if it took a turn for the worse. “If it all goes wrong, just switch the machines off.” he had promptly proclaimed those months before, between sips of his drink.

Now, given a definitive time ahead where machines could potentially be involved, his tone soothed. Gone was the stubborn, instant decision making. Something else emerged.

I decided I wanted to build on our earlier conversation to help re-establish some of the boundaries: I knew having a foundation of a conversation was important. I also appreciated how much attitudes and decisions could change according to someone’s changing condition.

I asked him about what he meant about ‘no machines’. “If there’s no hope, then don’t keep me alive” he replied. I knew this essentially was a decision that would fall under the Advance Directive to Refuse Treatment (ADRT or Advance Directive). This was a legally binding document that would explicitly detail which treatments - like a ventilator to help him breathe - he would not want, even if it shortened his life.

This – I was told later by a clinician colleague – was always very helpful to know. It meant we clearly knew his ceiling of care - the red line of treatment he did not want to cross. So what else was there? My parents had established a Will some years before, which had stood the test of time. During our talks, he floated an addition to the will: to include me as an executor. I immediately took the opportunity to shelf the idea. I was the middle of three brothers: how would picking one son over the others, I argued, not raise family conflict in the event of his death? I quickly realised this could not be done over the phone. I called him back a minute later, and told him, “In fact, I’ll come home and go through it with you. I have everything.”

Fortunately, I’m a designer at the Helix Centre, a design studio embedded in a teaching hospital in London. The Helix Centre is a unique design studio where designers sit alongside clinicians to solve healthcare problems and deliver impactful design innovation. I had been spending the last few months discovering, researching and exploring end of life care, as part of a four year funded project. We had already found evidence to suggest that planning ahead was difficult to do for a variety of reasons: the plans themselves were complicated and hard to use, they were hard to amend according to shifting priorities, and the conversations surrounding them were rarely done in time. We felt that there was a great opportunity for design and technology to improve the experience of end-of-life care for patients, families, carers and clinicians, especially in an area that was now startlingly real: advance care planning.

I printed off all the documents, gathered the collection of existing advance care planning options and went back home to Scotland. When I arrived, I knew immediately what I had brought would be useless: My work was based in and around England, but he was in Scotland. The UK regions operate with different health systems, even different legal systems. This was our first bureaucratic hurdle: how to navigate the various British systems, and try and coordinate between the various services.

I immediately realised there was no good way to record his decisions as we talked. Would we go through on the computer, read the PDFs, or print them out? But how would he actually record them, with a pen and paper? Where would he keep these documents? Unlike the Will, the advance care plan is not legally binding and doesn’t have to involve a lawyer, who could keep the document safe.

I knew already from my work at Helix that it can be hard to navigate all the forms that make up a complete Advance Care Plan (ACP): an ADRT, Preferences for care, a Will, Organ donation, Lasting Power of Attorney (or Power of Attorney in Scotland), even a Do Not Attempt Resuscitation (DNAR or DNACPR). These documents all have varying degrees of complexity and legality, and can be hard to change them if something happens, or you change your mind.

Even with a clear set of basic decisions, with my Dad’s full capacity and our continuing conversations, we still hit a barrage of difficult questions: who else in my family knew about this? We talked openly, but would my brothers understand? How would each relationship be affected if the worst happened? Can you even plan for that? How was I sure I was asking the right questions to my father? Was I missing anything? What would his surgeon say? Did we have to convince him of any of these decisions, or would he just agree without question? None of the documents, tools or plans could be personalised to my father’s needs. For something so important, it felt sorely lacking to our specific family conditions.

We nevertheless began the process of answering some basic questions about his care and priorities. Yet we found they grew into deeper unresolvable ones. It was beginning to be obvious: my father was not in immediate danger of losing capacity. The stakes were low, medically speaking. After all, the advance care plan and associated documents are there for when you cannot make the decision about various aspects of your care. The wolf was not at the door, and so we didn’t feel the need to make the hard decisions as we went through the plan. What we lacked in urgency, we made up with time and willingness. But we were let down by the process.

The paper-based, low-fidelity formats and forms represent the antiquated interaction between patient and health provider. They are one-way, slow and rely on appointments and meetings to confirm decisions. Though he can have the plans cleared with his GP and added to his record, it will take time and organisation. We had plenty of this, but what about other people who are faced with limited time? How can these plans be modernised to support them?

Digital health platforms can sometimes represent the panacea of the modern healthcare system. In one way, advance care planning would immediately benefit from the modernisation of an app service or web platform. The forms are complicated, and obtuse in their presentation: a well-designed user interface can easily fix that. Someone creating a digital advance care plan could more easily record their decisions and amend them if need be, a major stumbling block for paper-based plans.

However, in my father’s case – the case many campaigners seek to celebrate – he is making preparations far in advance of a particular scenario. His case is not complex, but it marks the start of a long journey of eventual decline as he ages. The challenge here is creating something that can be edited, stored in a way that is accessible, and maintained over a long period of time. There are currently few digital services that can confidently expect to last the decades that an advance care plan may be expected to be valid for. Companies go bust, data storages get wiped, subscriptions lapse, login details get lost.

Drawing back to the current system we have, I was left unsettled by some fundamental facts of difficult conversations around advance care planning. We were taking the time to have these discussions, but even with cooperative conversations and direct admissions, we would struggle to discuss some details. I realised that no matter the simplicity or transferability, having a conversation about the worst case scenario was really difficult. WIthout knowing the complexity of my father’s future health issues and possible trajectories of his needs, it meant that coming to a conclusion was hard.

It was clear we were benefiting from being educated, middle-class adults. We are used to informing ourselves of our health needs: my father had already taken the time to investigate and attempt to pick his own team of surgeons! “You’re not supposed to be able to do that” said one surgeon colleague. I remain impressed by my dad’s brass neck.

But what about those who have never taken control of their health? Those who are poorer, from a lower socio-economic class, who are more likely destined for a poorer death? What hope do they have of planning their care in advance? One consultant at a London hospice had once told me, “patients a lot of the time, will say: you don't need to tell me, just work it out for me.” The deference to clinical judgment, and a tendency for doctors to exhibit compassionate paternalism means that many people will never believe they have the power to choose their own preferences and priorities.

No manner of technology will change that behaviour, but conversations could help. They can help guide people away from entrenched, passive behaviour, and gently coaxed out what is important, what is significant, empower them to make active decisions about their care.

Nothing can really replace having good quality conversations that happen over a period of time. But using technology to support decision making can make the experience easier. To be able to navigate through the complex web of forms and processes, care planning is desperately in need of more innovative solutions. Solutions to help individuals express their preferences for care in the long term; to assist clinicians in coordinating the care needs of a patient; to help families make the most of their time together.

The discussions with my father were a great bonding experience. We made jokes, spoke seriously about the future, even planned the basics of his funeral. All stemming from a place of comfort and care, at a point early enough for him to take stock and consider what was most important to him now and in the future.

We had our first ever holiday together in Mexico, and it was there that I (at least) had the first suspicion that things may work out well between us. Choosing Costa Rica was a natural development for us, but the thing that cinched it was the chance to ground ourselves in the new year, in some of the most naturally diverse ecosystems on earth. I consider it the height of privilege and fortune to be able to say we did this. What we consider rare, special, unique has been whittled away, and trying to put aside complicated feelings of guilt about environmental impacts, the things we learned could may be worth it.

The Rainforest
We travelled to the southern tip of the country, to stay on the edges of Corcovado National Park. The park is known as the most diverse region in the most diverse country in the world. It is a green jewel of natural splendour, a peninsula of ancient primary rainforest.

I'd never experienced the complete, and total envelopment of nature at such a deep and wide scale. The experience was almost psychedelic (in the 'soul-revealing' definition of the word). The full-spectrum of sight, sound, smell and touch meant that everything vibrated with life. Every piece of soil, grass, leaf, branch and trunk was in motion, in decay, in flux.

In those days, walking around the forest floor, I was struck for the first time - in the deeply intuitive sense - about the interrelationship of things. To talk about ecosystems (especially in design) is very much part of the language of complexity about the modern world. But to see how things interacted, relied, fed and responded to each other in realtime, shifted my understanding of life.

It also showed me how death played its part. The things we move across and found on the floor - the dead things - were still very much useful, were just the lowest part of this giant turning wheel.

"...a rotting log is home to orders of magnitude more living tissue than the living tree… The judge asks what living things might need a dead tree.

‘Name your family. Your order. Birds, mammals, other plants. Tens of thousands of invertebrates. Three quarters of the region’s amphibians need them. Almost all the reptiles. Animals that keep down the pests than kill other trees. A dead tree is an infinite hotel…

Rot adds value to a forest. The forests here are the richest collections of biomass anywhere. Streams in old growth have five to ten times more fish. People could make more money harvesting mushrooms and fish and other edibles, year after year, than they do by clear-cutting every half dozen decades…"

It struck me then, about how our civilisations have divorced us from what it really means to participate in the cycle of life. The presence of dead things is neither benign or tragic, it is necessary. It is a contribution to the larger thing. To speak of a natural death in a human sense is a misnomer. This was death in nature, and it was beautiful.

It also revealed a deeper sense of time. We humans live in planetary cycles of hours, days, weeks, months, and supposedly years. But in the forest, there was a sense of a longer time. A continual time. Time that blurred into the undefinable. Things moved, but didn't. There was a deeper movement going on, and we were simply flashes of light passing through.

The deep unforgettable sensation of vibrating life, of presence underneath majesty, of feeling a different type of time, has carried me through this year, and surfaced again at various places around the world.

The Redwood
In April I took a trip out to San Francisco to meet with my business partner, Alex. It's a rare thing for us to travel to each other physically, we do almost all our work together remotely. We had one afternoon off, so with his girlfriend Jess, we went to the most accessible and easy-to-reach primordial place: Muir Woods National Park.

I've been very fortunate in my life to explore Redwood forests, to come up close to Giant Sequoias, and stand beneath them. Before the trip, I'd stumbled across a great Japanese book on Shinrin-yoku ('taking in the forest atmosphere' or 'forest bathing') and tried to take onboard some of the lessons around deep listening and immersing yourself in the sensorial feeling of a forest. It worked. To sit with a being of such size and age, it doesn't approach you as an abstract experience - this feeling of long time - it is there, right in front of you.

Leaving aside the boxing of these redwoods into small, discreet parks that are fenced, picketed and displayed like museum pieces, the Redwood parks leave something in you that is such a privilege to experience.

Being the United States, you can of course buy a Redwood as you exit through the gift shop. So naturally, I bought one. In fact, I bought two. One for the farm in Italy, and another for my Dad in Edinburgh: we'd taken a trip to Yosemite a few years before, and taken in those forests too. This was a gift for both of us, to remember our time together, but also for the future beyond the both of us.

I liked the idea of giving him a tree that would at first, peek through the soil in our small Edinburgh garden, but eventually, without anyone really realising it, dwarf the surrounding buildings, a rocket ship of a tree bursting into the sky over hundreds of years.

I too, wanted to try and live along a longer time frame. To act beyond my short life. To literally plant a seed, root a tree into a spot where it might flourish over centuries. Placing it into a small terracotta pot, it seemed absurd to consider how gigantic this thing could get over time.

The Oak
In May, we celebrated our wedding anniversary. A party to bring our extended families together, with our friends on my wife's family farm. Two friends led the ceremony, and we came together underneath an Oak tree, in a field of pomegranates.

The tree slowed us down to a pause, and reminded me that for the tree, our meeting, our marriage, our life together, was just a few rings around its trunk. To be in the company of a sentinel, shaded by its leaves in the spring sun, was to situate ourselves in a moment, in time, and recognise our passing in it. It made me realise how often I took for granted the presence of trees, and how slow we needed to move to properly see them.

"You and the tree in your backyard come from a common ancestor…A billion and a half years ago, the two of you parted ways…But even now, after an immense journey in separate directions, that tree and you still share a quarter of your genes…"

Roberta's parents grow organic pomegranates, and the field in which we stood was home to thousands of them. The garden of Eden had an apple at its centre, but most historians actually name it as a pomegranate. It is a fruit of life, of jewelled brightness. Standing amongst them, under the Oak, talking about past, present and future, I felt amongst the company of a different type of being that watched over us.

The Pine
We've spent the summer in Montenegro. I didn't expect to feel a similar vibrancy of life like I did in Costa Rica. But in Montenegro - for whatever reason, accidental or otherwise - I've seen and felt a complexity of nature, an interwoven dialogue between plant, insect, animal and weather, that has often taken my breath away.

Perhaps, unlike the rest of Europe, they don't cover their land in pesticides? I don't know. It has probably to do with the fact that the country is almost all mountain. Endless ripples of rock that crash down on itself for hundreds of miles. A country called the Black Mountain is in this case, extremely accurate. The pines that cover these hills speak to an older Europe, one that avoided the all pillaging of resources by Romans and subsequent cultures to make ships and cities. And so the variety of plant life and insects that hug the hills around Kotor Bay where we live, make for rich living ecosystem that I have taken so much pleasure from.

In July, John Thackara retweeted Naomi Klein, who in very deliberate words encouraged everyone to read Richard Powers book, The Overstory.

I took one pass at its synopsis and ordered it straight away. It seemed like Powers had put into prose what I'd been feeling all year. The trees are our friends. They communicate to each other. They live in a time beyond our understanding. They were here before us, and they will be here after us.

I read it underneath a pine tree, that stretches to the water near our house. I consider the tree my friend now. I feel like Powers book acted as a translation text, to put into human words the truth about what trees are, how they live on this planet, and how we can re-join the world with them. I am not underestimating by saying it may be one of the most important books I've ever read.

The book, the experience and interaction in the rainforest, with the redwood, the oak, the pine have utterly shifted my perception of life. I feel you cannot look at a tree in the same way, you cannot be moved by the presence it creates, and be changed by it.

I think one of our greatest flaws as humans is our inability to think beyond our own time. It probably is a genetic/animalistic trait that predisposes us to treating the here-and-now as the most important, to watch for threats, to deal with the nearest around us.

The constant banging of the mindfulness drum, of being in the present, of being here now can sometimes act as a trap to a deeper truth: some things last a long time. Some things take their time, in a way which is almost impossible for us to consider. But we need to consider it.

Our appetite for everything at the tip of our nose has gotten us here, and here is not a great place. We've consumed without delay, taken the short term gain over any long term pay off. We've forgotten the value in planting seeds for things that will never flourish in our life time. The things that matter, really matter, take time.

Trees can help us remember this.

Jem Bendell wrote those words last year in his startling paper, "Deep Adaptation: A Map for Navigating Climate Tragedy". I've spent the last few days trying to digest it, along with a number of other things swirling around in my head.

It feels like we are reaching a heightened state of fear and panic about the future. Bendell makes the point at various places in his paper, that the future is uncertain. Nevertheless, there are key indicators to suggest that we will soon be entering into a series of feedback loops which will uncontrollably change both the climate, and our civilisations: he talks about methane released from the seabed underneath the arctic. He talks about the fires in that region - which have been in the news (again) this month. For him, these are not outliers, these are the forms of the new age we are entering into. And it will not end well.

This new age takes two flavours: the world will change and nothing will follow. Or, the world will change, and something new will emerge. This is where people's natural outlook plays its biggest part I think. Do you think the world will end, or do you hope we will endure?

Taking a step back, almost physically from my laptop where I read the paper, I tried to make sense of this pivotal moment. Here we are, on the brink. If you listen to some people, it's the point of no return. For some, we still have time to limit the worst of it. For others, like Bendell, we are actually past that moment, and now it's about creating 'deep adaptations' to our civilisation in order to survive. For others, this is not even a problem: the changes in temperature and climate mean we can holiday in the UK rather than Spain. For myself however, I tried to contextualise this apocalyptic vision inside my own lived experiences.

As a result of my own experience, with the things I was absorbed to, I have to consciously shut out the cultural touchpoints surrounding apocalyptic visions, which have entered my imagination over the last 30 years or so.

I watched Akira when I was about 9, its beautiful, dense, point-lit Neo-Tokyo rising out of the rubble of nuclear war was both beguiling and terrifying. I watched Terminator 2 far too young, and had nightmares about being trapped in playgrounds when the nuclear bombs fell. These were hangovers of the nuclear terror, the defining horror of the Cold War which I was born into. As a teenager, I loved George Romero's Dawn of the Dead, with its anti-consumerist commentary, but the zombification of culture - from smartphone addiction, to declining voter turnout - leaves a bitter taste in the mouth. But now, now we have this even bigger mysterious, emotionless terror to face: the planet itself.

And yet, as I thought about it, there was twinges and memories of the end of the world, that had happened to me as an adult. I remembered: we've been here before. I didn't have to imagine what the death of the world order looked like. I'd already experienced it. In an interesting twist of timing, I both experienced the collapse of one world order, while being exposed to the most potent excesses of it.

In 2008, I was working as a freelance designer for a design studio in London. It was very early in my career (I'd graduated a year earlier) and was brought on to help design art catalogues for the Gagosian Gallery in New York. The project itself was incredible: I got to work at one of my favourite studios, alongside one of the directors whose reputation was unparalleled. I got to learn from the master. I was able to see first hand his decision-making process for picking paper stocks, his intuition about layouts, printing process, typographic choice. It was like drinking fresh water from a mountain stream. I was in heaven.

We'd gotten one book under our belt (a stoic catalogue for sculptor Richard Serra) and we were working on the second, with a third on the way. This second was for Richard Prince, the American artist. He's most famous for his Marlboro Men series, pushing the boundaries of ownership, copyright and semiotics. His paintings, taken from advertising are in a way, the natural successor to Warhol and their pop consumer dirge.

This latest body of work, born out of the excesses of the New York art scene in the late 2000s, was called Canal Zone. The paintings - collages of donkey's, pin-up girls, Rastafarian men with crudely pasted guitars and elliptical shapes - were grotesque, horrific, exploitative pieces. I took great pleasure in creating the crops for detail pages, focusing in on particularly contrasting textures and badly placed materials that really exposed the materiality of the pieces rather than the pornography of the images. The artist reportedly like them.

The pieces - as is usual for catalogues - had an essay that accompanied them, inside the book. It was written by James Frey. Frey is famous for writing his own autobiography, but making it all up. He has a directness which is exposing. We selected a very jolly looking typeface that would not be out of place at a Chicken Cottage menu. It was the best way to mask the terror.

I was working on that book, that essay, some day in September 2008. I was watching the RBS stock go into freewill, with detached bemusement. It was my bank - I grew up in Edinburgh and opened my first bank account at their head office in St. Andrew's Square - but this felt strange. It was like watching capitalism destroy itself.

As I recall (though its probably different in reality) it began with Lehman Brothers, and then it hit others, and then Northern Rock, and then RBS and others. It was a chain reaction. Like Hemingway said about going bankrupt, it happened "gradually, then suddenly."

I was watching - as many of us were - what it was like to watch an economy come close to collapse. This was essentially the collapse of the neoliberal world order. Everything had finally caught up with it, the feedback loops had become unsustainable, the nature of man was being horribly, brutally corrected by the science of economics.

But the interesting thing was, I was working on a catalogue that was viscerally describing what came after.

Back in 2019, Wwhen I read Bendell's paper on the imminent collapse of our civilisation as a result of the runaway climate breakdown that is about to happen, I immediately remembered the essay that James Frey wrote, to accompany this horrific, broken down series of paintings of mankind run amok.

I digged around my files and re-found it, and I've placed it in full below. It still haunts me, as a rapid progression of one world order, dragged into a new one. It's over the top - like the paintings - and features caricatures, and dramatic exaggeration (it is a piece of fiction after all). But still, the story, the artwork and the catalogue all signal the death throes of one civilisation - one born out of Cold War fear and neo-liberal financial excess - and replaces with another. It was titled, 'Ding Dong The Witch Is Dead'

–––

You are forty-six years old.
You are married and you have two children, teenage girls, thirteen and fifteen, they are supple, budding, on the edge of womanhood.
You work in finance. You are a partner in your company. You have forty million dollars in the bank, a Fifth Avenue co-op, a house on the pond in Sagaponack. You belong to a club in the city, and a club at the beach. You have a driver, a Mercedes and a Range Rover out East, your daughters both have horses.
You never fly commercial.
You never buy off the rack.
You never cook or clean you have people who do that for you.
Every year at Christmas you and your family go St. Barts. You stay at the Eden Rock in a suite you eat at La Plage, at des Pêcheurs, On the Rocks, Do Brasil. Your friends are all there some have yachts 200 foot pleasuredomes with millions of dollars of art on their walls, some rent houses, some are at your hotel, others nearby. You spend ten days eating and drinking and fucking sometimes your spouse, sometimes not. Your daughters lie on the beach and gossip with other girls and flirt with boys and disappear at night.
You’re going early this year, hey why not, the weather has been shitty in New York and political turmoil Russians Arabs Chinese fuck ’em all have been making business difficult.
Your driver picks you up everyone’s excited woohoo woohoo he takes you to Teterboro. The Gulfstream is waiting you only own a share of it someday the whole fucking thing will be yours. You get on. Your girls are texting their friends they have dvd’s and computers. You and your spouse each have a drink and go to sleep. You fly it’s fast and easy and extremely comfortable. You land there are people waiting for you they gather up your luggage and take you to the hotel. You check in everything is beautiful, perfect, expensive, somehow it evens smells of taste and luxury, it’s just the way you like it, just the way, another Christmas on St. Barts, lovely.
You have dinner drink too much the girls leave you go to bed you and your spouse both scream while you fuck even sex is better here.
You go to sleep. On sheets that cost more than most people on the island make in a year. Who cares. Fuck them. Let them sleep in dirt. As long as the food is warm and the drinks are cold and everything stays perfect. You go to sleep.
Peacefully.
Sleep.

–

You are shaken awake. Your daughters are in your room they know they are not supposed to come into your room, in New York it’s fine but not here, not on vacation, not when you might be doing something you don’t want them to see, they are thirteen and fifteen.
They looked shocked, terrified, hysterical. You immediately think they’ve been raped (not yet, my friend, not yet). You come out of sleep quickly ask them what’s wrong they’re both shaking their entire bodies somehow shaking one of them says it’s over, everything’s gone, the other immediately starts sobbing, everything’s gone.
You get out of bed. You tell your girls your beautiful young, supple, budding, on the edge of womanhood girls to calm down they don’t, they can’t, they both fall apart, neither can speak. You hug them your spouse wakes wonders what’s wrong you raise your eyebrows you still don’t know.
You still don’t know.
You still don’t know.
Your spouse gets out of the bed your older daughter calms down enough to say there was a war.
Was?
Everything’s gone.
Everything’s gone.

–

Not everything, but pretty fucking close. Every major city in North America. Every major city in Europe and Russia. The entire Middle East every city town village hamlet every mud fucking hut. Pakistan and India bye-bye. China bye-bye, though there is so much there that some may be left, no one knows, no one knows. There’s some desert in Australia, parts of the Reef. South Africa burned the rest soon to follow. Japan hit again it is no more. South America incinerated. Iran fired first. Israel responded. Then Russia. Then us. Then it didn’t matter who fired or when or where all of the buttons were pushed. Kaboom. Kaboom. Kaboom. Over and over and over and over, again and again and again. Kaboom. Not everything, but pretty fucking close.

–

First day you’re shocked.
Second day you’re scared.
Third day you’re confused.
Fourth day you’re panicked.
Fifth day you fall apart.
Sixth day there’s a riot.
Seventh day doom.

–

Your money is worthless. Your job and title and degrees mean shit. Your apartment and house are gone. Your parents are dead. Your friends are all dead. Everyone you know, except for your spouse and children, are all fucking dead. The restaurants, galleries, shops, and boutiques that meant so much to you, that were so much a part of your life, that were so fucking important, they’re ash. The school you went to, ha ha ha ha ha. The place where you were married, no longer. Everything that was, is no longer. That includes hope and love and the future. No longer. Ha ha ha ha ha .

–

The hotels become encampments. Water, food, and bullets become currency. Women become slaves. Some cook, some clean, some carry children, some take care of children, some care for the sick and the wounded, some care for prisoners. Some of the women become objects of pleasure and they are defiled, defiled every day, defiled in every way you can imagine. The weak become the strong. The fist rules the mind. Words you come to live with and know include force, brutality, violence. Fear loses its meaning because you are absolutely fucking terrified every moment of every day. You are not strong. Your hand is limp. You live in the dirt. You wear rags. You eat the leaves of trees at night when you’re done working and on good days, the best days, you get a piece of discarded fruit, or a well-chewed bone. When the sun sets, and the fallout has made the sunset beautiful beyond your imagination, you curse it, you curse it, you curse that fucking sun.

–

Your daughters are gone, they were taken, dragged away while you were lying beaten and bloodied too damaged to scream, they went into the hills, they remain in the hills, you don’t know where it’s an endless green mass, they were young, beautiful, supple, budding, on the edge of womanhood, and they are gone.
Gone.
Gone.

–––

Is this our fate?

The economist Mark Blyth wrote in 2016, "the era of neoliberalism is over. The era of neo-nationalism has just begun.".

I've spent a large majority of my adult life transitioning from the old neoliberal world order in which I was born into. That world is gone. The security and tradition of my parent's generation is essentially wiped out. The expectations of my own generation have been snuffed out as a result of the Great Recession. The world, in many ways, has already ended.

The rise of Neo-nationalism is one indication of the collapse we may already be experiencing. Which provokes in me, the most unusual feeling: relief.

It's already started. You don't need to hold your breath and wait for the drop. So that means we don't need to be afraid of what happens next, it's here, so what are we going to do about it?

For the past 14 years, John had been part of small psychodynamic psychotherapy group in North London. I joined that group 3 years ago, after coming back from the Netherlands. We met every Thursday at 5pm, for 90 minutes. That one hour and a half every week was the most contact John had with the outside world. In a lot of significant ways, we were his last social link to the world.

John lived alone. He spent his time sitting in his chair. He would often say that he'd been sitting in that chair for 20 years, unable to move. For the first year I thought he was speaking metaphorically. Then as I got to know him, I learned was speaking literally.

John's life was so barren, devoid of people, energy and movement, he would spend all his time in his chair, in his home, never moving.

It's hard to express just how sad John made me feel. When you meet someone you know is lonely, the first feeling is sometimes sympathy, or pity. That was true for John, until he would talk about some of the things that happened to him in his life. Then it descended into something deeper. Darker. Most despairing. He said he was at therapy as a desperate last-move to save himself, though he was quite convinced that it wouldn't help undo the things that happened to him.

His life was made up of shattered fragments of bitter storytelling. He'd been married to a woman for a number of years. Had two daughters.

But at some point in the 90s or 80s, something happened with his wife – I never really found out – that meant he was taken to court, and lost custody of his daughters.

After that, he'd been in a serious car accident. Combined with some other accident in his childhood, it meant he walked with a stick, with one leg shorter than the other. He wore the same big, black, custom leather shoes every week. It gave him the air of an industrial worker. They were almost clown-like in their size.

His life was a wreck. But that was nothing compared to what happened to him before he was even born. I feel compelled to write about John because his story, his family's story would be otherwise lost forever. I don't know how much of this breaks a protocol or unwritten therapeutic practice. But the ache I feel when I think about John makes me want to communicate his story.

He had no reason to fabricate any of it, and early on in my time with him, he shared a written piece that painted a brutal picture of the upbringing he had. The horrific context to his life. This generational trauma he carried his entire life, that he has now taken with him to the grave.

It is this particular element of his life that I find the most upsetting. That John never found peace in his own history. At least not with us, his therapy group that he attended as a last-ditch attempt to make sense of it.

John had the hardest mask of any person I've ever met. With his sheer stubbornness, he maintained a facade that was held in place for 70 years. Only once or twice, did it slightly slip, and when it did, it revealed a sadness that I find hard to recall or touch again.

The emotions are almost too overwhelming. Which troubles me more, because it is exactly the reason why John kept the mask firmly in place. He didn't want to share his pain, but it calcified in him until there was barely anything left of himself.

Our therapist last said that he starved himself of attention, or love in an attempt to relieve his guilt of being alive. I can't imagine how that must of felt like, but I feel in a way honoured that he let us know a bit of how it did feel.

Only once did John mention his younger siblings, 'the babies in the snow'.

John was Polish, but born and raised in India in a British camp, just after the second world war. During one session he gave us a piece of A4 with his families account during the war.

"My family lived in the part of Poland which was invaded by the Soviets. When the Soviet planes were bombing and strafing our parents used to tell the children to run for the woods on our farm. Attacked from every side by hugely superior numbers and technology, it was only a matter of time before Poland was overrun. The Nazis alone had 14 times as many tanks and 5 times as many planes as the Poles.

People who have lived under both Nazis and Soviets often say the Soviets were worse.

They shipped out a million people, only a fraction of whom survived.

They came at 2am in February 1940. Eventually my family finished up in a labour camp not far from Archangelsk, near the Arctic circle. They were moved mainly by train and barge. Barges were often used as transport.

My mother`s youngest child died on such a barge while they were being transported. My mother bribed the captain with her wedding ring to pull over to the bank so the baby could be buried. The ground was frozen, so she, the baby Teresa, had to be buried in a snow bank.

Many people died in the camp. The old and the young didn't last long. My mothers next youngest child, 5 year old Marian, died next, followed by 6 year old Danuta. My sister Zofia, 8 at the time, knew she was next. She prayed she could have a piece of bread before she died, not with anything on it, just a plain piece of bread."

John loved his sister Zofia. Her experience of the camps and her starvation had given her an obsessive attitude to food. Her tables were always filled with food, and when he spent time with her, all she would do was feed him. He loved the attention, but there was a deep anxiety to it all.

Last year, Zofia died, falling down some stairs. With that fall, John was left alone. It was around about then, that his cancer got worse.

John had about 4 cancers in his body - across his kidneys, liver, bone and I think pancreas. He had been living with these cancers for years. I was amazed he was in the state he was. He was in such poor state, I knew he probably didn't have long to live.

I tried to forget my own experiences and professional work when I was in our group therapy. I was desperate for him to go to the Marie Curie hospice, to meet the teams and begin palliative care, but I didn't try to help him. It wasn't about helping him practically, but helping him engage with his own life, uncover, investigate it.

John was indignant about his treatments. He didn't want to go the hospice. He would pour over all the research, all the findings, all the papers about his treatments he was getting at the Royal Free. He would undergo numerous surgeries and treatments to keep the cancers at bay.

His life was a litany of abuses. His body was under siege, eating away at itself. But he was somehow managing to stay alive.

We talked with him about his attitude to life as staying as still as possible, to stay alive as long as possible, without actually living.

He wasn't living for anything in particular. His daughters, now adults, had a strained relationship with him. One lived in California and he barely saw her. They loved him dearly, obviously, it was clear to us. But he would not tell them the extent of his illness. We knew more about him than his own family. We knew the pain he carried, about his family, his sister. But we felt it too.

I struggle to make sense of what happened in John's life. On one level, I really felt his silence mirrored my own grandmother, who fled the Russians after the second world war, and grandfather who was imprisoned by the Russians in a Gulag. Their silence, their coldness in raising my mother in refugee camps in Germany has imprinted on me, and my brothers, in a way that is hard to describe. It is one large reason I am in therapy myself. It is perhaps one reason why John and I were together in the first place.

–

Just before Christmas, John was talking about wanting to take a trip to Japan. It was the last place he'd ever wanted to go.

In those last session, with cancer throughout his body, his life in a frozen stasis, he lit a candle for this life he'd once had. I was talking about my recent marriage, and how happy I was. He talked about meeting his wife for the first time. A woman he'd met in the US, in California, and the adventure they'd had.

This John, this mysterious younger John, without any of the agony of injury and cancer, perhaps successfully suppressing his family history, was a man full of life. He talked about meeting this beautiful woman, convincing her to travel with him across the Southwest in a car, going from state to state. He laughed as he recounted his stories about the Grand Canyon and Florida swamps. It was so beautiful to see this younger, care-free man shine through this frozen, still man in front of me.

That was the last time I saw him.

After Christmas, notes would come through - making excuses, which were common - that he couldn't come to the therapy session. He was ill. He couldn't travel.

We knew it was coming eventually. I knew it would come. I didn't know how I felt about it. I still don't.

I didn't think I'd ever mourn the loss of someone like John. Grieve for his life, his sister, his family. These people I never met.

But in his quiet way, he taught me a lot about sadness, loss, life and myself. He was like a friend to me, even a father to me. He was this man I talked with, about every little detail in my inner life, every Thursday for an hour and a half, and now he's gone.

Human-centred design offers a powerful way to improve healthcare. By identifying the human needs of people, and working with them, design can take a multifaceted approach to solving some of the most complex problems. Of all the areas in healthcare that would greatly benefit from design innovation and a human-centred approach, it is end-of-life care. Simply put, the needs are the most human: it demands a holistic approach to support clinical treatments, along with emotional and social support for the patient and family, while always focusing on the relationships of everyone involved. We understand there is an appetite by the global palliative medicine profession to set out and build a positive vision that tackles 21st century challenges, expressed with a flexibility to experiment, openness to collaborate and desire for change. Human-centred design is an effective tool to support the palliative medicine profession in its goals.

Applying design in healthcare at the Helix Centre

The Helix Centre is a healthcare innovation studio, embedded inside St Mary’s Hospital in London, led by Professor the Lord Ara Darzi at Imperial College London. Established in 2014 as a collaboration between Imperial College London and the Royal College of Art, we are a team of designers, technologists and clinicians tackling some of the most pressing challenges in healthcare.

We believe design and technology will play a natural and fundamental part in defining the next decades of end-of-life care. It is increasingly accepted that technology will continue to integrate into everybody’s daily lives, and global healthcare systems as a whole are embracing technology at the heart of their work.

The Helix Centre, during one of our design workshops

In our studio, we employ various processes to rapidly dissect a problem, highlight areas of opportunity and prototype solutions. We collaborate internally alongside other subject matter experts to explore opportunity areas from their unique perspectives. We consider everything from a user’s motivations and behaviours, to the viability of potential business models, to the feasibility of technological execution. We co-create solutions with frontline healthcare professionals, academics and the general public.

We have a dedicated team who work on a number of end-of-life care projects. Our aim is to research and design innovative solutions that improve the quality of life for people - young and old - living with life-limiting conditions or are at the end of their life. We are committed to alleviating suffering for dying people, empowering them to live their life to the fullest and to transform the support and experience their families and carers receive as well as professionals and health systems alike. We have been developing three active areas of work that broadly address end-of-life care in the hospital, the home and the hospice.

Enabling conversations in emergency care settings

To understand the current problems for end of life care, it is important to begin in the place where death occurs the most: the hospital. Nearly half of all deaths in England occur in hospitals (223,007 out of 469,975 in 2014), with 69-82% of those who die needing palliative care. Despite this large proportion of people dying in hospital, only 3% actually want to.

Talking about death in a hospital can be incredibly difficult. The curative setting builds an expectation with patients that they are going to get better, and receive long-prolonging treatment at all costs. Many feel that the responsibility for discussions around palliative or end of life treatments should come from clinicians.

End-of-life care in this context is often delivered last minute, following an acute episode that places extraordinary strain on patients, families and clinicians to have meaningful conversations in a short time frame, about the possibility of dying. These conversations at the end of life often form around decisions not to resuscitate the patient. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) forms are used in these instances, and are widespread having been put in place for 94% of patients’ notes at the time of death.

DNACPR forms are used to make specific clinical decisions for an individual if their heart or lungs stop working, but their use has been linked to many problems. The forms vary within NHS Trusts and community settings, meaning that some people have multiple forms to suit each setting; and there are cases of DNACPR forms having been created without the knowledge of the person or their loved ones. Having difficult conversations about declining health is a vitally important part of how we care for people with life-threatening conditions.

To help improve the way in which end-of-life care is delivered in hospitals - and in collaboration with the Resuscitation Council and a working group of other 30 national organisations - we have helped redesign the way in which difficult conversations about life-sustaining treatments are conducted and recorded with a new form and process called ReSPECT. ReSPECT is a clinician-led process that brings the patient to the centre of the emergency care decisions.

The ReSPECT form

At the centre of the ReSPECT process is a form which is designed to guide a conversation between healthcare professionals and the patient. It features a graphic device used to demonstrate that there is often a compromise between sustaining life and providing comfort and dignity. We helped to clarify this process for patients, to make it accessible and easy to understand.

One of the biggest challenges in introducing a new procedure to the healthcare sector is educating and supporting the people that need to use it. Indeed, clinicians in general get very little training in holding ‘difficult conversations’ specifically and end-of-life care in general. So in response, Helix created a prototype web app to provide accessible training and support to clinicians using the ReSPECT process. This prototype was then developed further, and delivered to professional audiences in a collaboration between Helix Centre Clinical Research Fellow Dr. Gehan Soosaipillai, UCLPartners and Tom Stables Associates. This new digital tool enables healthcare professionals learn about the new process with interactive training scenarios and discussion tips.

To date, the new ReSPECT process has been implemented in over 130 sites across the UK and Ireland, and is being evaluated by Warwick University.

Making advance care planning more personal and better connected

As the population ages, and medical knowledge advances, the importance of giving people more choice and control over their care has never been greater. Getting people to fill in an advance care plan (ACP) has been shown to be highly effective in aligning healthcare with patient's wishes, reducing hospital bed days in over-65s, and moving deaths from the hospital to the community.

However, filling in ACPs is currently human resource intensive and is putting a strain on GPs, palliative care teams, charities and volunteers. The result is that not enough plans are ever being completed. We understand that carefully structured conversations that explore patient's values, not forms, will be the key to increasing uptake of advance care plans. While they are predominantly person-to-person or form-based, the service cannot scale.

We have successfully created the first spin-out venture from the Helix Centre, called Digital Care Planning. With NHS funding, it is modernising the way in which ACPs are created and shared within the network surrounding a person living with a life-limiting disease. It does this by genuinely focusing on their individual needs and priorities for care using technology. We learned that some people prefer to quickly establish their priorities of care quickly, whereas others wish to take their time and discuss the details. Surprisingly, we learned that though technology skills vary from people to people, their acceptance of new technologies - voice technology, chatbots - was higher than originally thought. Our approach to technology allows everyone to define their plan according to their own preferences, promoting their autonomy and independence, moving at a pace that is most comfortable.

Our platform, Amber Care Plans is an easy-to-use, free website that captures people’s future care decisions through accessible user interface that is designed for real people, not healthcare professionals. You can learn about all the various aspects of an advance care plan, record your decisions easily, print off for your personal records and digitally share with loved ones. As Gemma, a Marie Curie volunteer remarked, “I’m thinking about my family when filling this out. It’s great to know they have something to guide them.”

Amber was designed in collaboration with a wide-range of people living with life-limiting conditions

As well as creating a truly person-centred advance care planning tool, we are scaling the ability to create and capture digital care records for the UK health service. Our goal is to effectively and simply connect people with the right healthcare professionals, so that when the time comes, everyone knows what that person wants and needs. The website - amberplans.com - is available for use today, with integration plans in place to connect with NHS services in the near future.

Developing the future of hospice care

The medical innovations of the 20th century radically changed the ways we die, moving it from the home to the hospital, with particular problems we’ve already addressed. In this new century, we need to build a better relationship with death that is open and inclusive, to understand and create better networks, services and places to help us to live well until we die.

It is our mission to define and help deliver future forms of end-of-life care, using contemporary and emerging technologies and practices, and we’re looking at how we can do that with the hospice sector. Hospices perform the most specialised and experienced end-of-life care in the UK, caring for around 360,000 people each year. They are excellent places to meet the many needs of the dying person, however they suffer from a variety of problems, not least of all the fact there are too few referrals from community services and hospitals to hospices which means patients lose out on the experience of hospice staff near the end of their life.

Given many people do not access specialised hospice care, informal carers play a significant role. In any future care model, the needs of these caregivers need to be considered; the caring burden is physical, mental, emotional, and financial, causing high levels of anxiety and stress over a long period of time.

The experience of dying is a deeply human one. It is a uniquely emotional, psychological, spiritual - even mystical - time that everyone will go through. Death can be a terrifying prospect, but good end-of-life care can make a huge amount of difference. We believe that to make radical improvements to the holistic care of the dying person, there is a greater need to support dying people with their psychosocial - spiritual, emotional and psychological - needs. It is vital to not only serve those person’s needs, but broaden the abilities of those caring for them to support and attend to them, both professional and non-professionals.

With the amount of care being delivered by informal - often family - carers, it is vitally important that we both train people to become carers, and support them in being the best carer possible. This can be achieved in the long-term through education, or by identifying the unmet psychosocial care needs and better enabling and equipping people today, to deliver that high level of care.

We have identified five main issues that describe the desire for self-administration of pain relief, the notion of social death, coping with compassion fatigue, accomodation of illness and loss and death anxiety. These issues were factored against six methods to tackle these problems such as peer-to-peer support, training and skills management, new and emerging therapy practices, self-management and others. We are currently developing three new prototype services that tackle some of these complex issues, leveraging the expertise of the hospice movement and the desire for radical change. Patients and families are seeking new tools to support long-term complex needs, to be empowered to care for each other - in their family and in their communities. If done appropriately, technology has a powerful role in enabling this.

By combining human-centred design, relationship-based care models, evaluating and implementing existing and emerging technologies with evidence-based research, we believe we can transform the experience for patients, their loved ones and professionals. We think design can make a huge difference in improving clinical and social outcomes and to the effectiveness of end-of-life care services, particularly for hospices. We are working to establish a tangible vision for the future of end-of-life care, that supports everyone to live as well as possible - with all the joy, sorrow and meaning that comes with it - until the very end.

This editorial was published in the European Journal for Palliative Care in June 2018, in its final edition.

I'll be using this occasionally (so expect sporadic, short, long, sometimes inconsistent posts) ranging from all the areas of interest I have. From my work designing human-centred, relationship-based products and services centred around end-of-life care at the Helix Centre ; the continuing hard work of bringing a mental health product that uses music therapy via Humane Engineering and our app Cove; and some of the overlapping ideas and issues from my research studio Being and Dying. Perhaps even some photos that would have traditionally gone on Instagram, or music links that will typically live on Spotify.

I think for those of us fortunate enough to have some modicum of technical expertise, we are afforded more privacy, control and voice than others. I've been slowly weaning myself off most social media, but maintain an active Twitter presence (mostly because there remains, for all its faults, a fantastic community of people wanting to connect and speak to each other about good, important things). I think there is a better way to connect, and share ideas, and perhaps one of the oldest ideas of the modern internet: the personal blog, may work well.

I am also using this platform as a way to test ways of writing, and I'll probably follow this post with some published work that I think deserves wider attention.

That's it for now.
IW