Open Plan Dying

A lecture delivered at the AA Night School, 31 October 2014 at the Architectural Association, London.

This lecture tonight is about a few things: Understanding how the the city has changed the way we die as individuals; how through a broad understanding of death in the modern sense we can understand how the contemporary city can help us to die better; and how we can use design & architecture to facilitate change and establish 21st century conventions.

Logan’s Run (1976)

The reality of dying

First of all, let’s understand a few things about dying, the reality of dying. There is no easy way to say this: You will die. Your chances of dying doubles every 8 years. It is obvious, but we never really look at it black and white. Let’s get that out the way now, and think beyond our own personal death. Because it depends if we think about when we will die, or even at all. In reality, in our lifetime, death is now a slow process and our lives are characterised by long term, chronic disease.

University of Minnesota

Our commitment throughout the mid- to late-20th century to the medicalised treatment of the dying has resulted in a culture of often invasive treatments at the point of near-death. What we think will save us in emergencies, in fact can add to a lower quality of life over time, and often lead to a worse death. Our pursuit of extending life no matter what, results in a poor death, much poorer in many ways than what we experienced decades and centuries before.

Johns Hopkins study (1998)

We have an apparent contradiction in that modern medicine can hold us alive for longer, but often at the cost of a quality life. It compounded by the differences in attitude between those who administer medicine, and those who receive it. The public lives a different life and understanding from those who treat us. The above chart describes ‘preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness.’ Experienced doctors at John Hopkins Hospital in the US were asked some simple questions in response to the hypothetical scenario of experiencing an irreversible brain injury. They were asked if they would subsequently opt for:

  • CPR
  • Artifical ventilation
  • Dialysis
  • Feeding Tubes

These resusitation treatments are common around the modern world as life-prolong treatments, and are used everyday for a wide variety of threatening conditions. What is quite shocking is that, given the prognosis of a serious brain injury without any other terminal illness – a scenario that essentially suggests a low subsequent quality of life should you survive – 80% of the physicians declined all of the above therapies. The same doctors that would regularly maintain patients on life support systems for similar conditions, would not want the same for themselves.

Yet, pain relief was agreeable, this is something we can all side with. But to ask the same question of the general public and the numbers are almost always reversed on every therapy. It’s not that doctors don’t want to die, it’s just that they know enough about modern medicine to know its limits. This describes a fundamental difference in opinion about what is worthwhile treatment, and what is not.

It seems that even something as seemingly straightforward as life-prolonging treatment in hospital is not as simple as we think.

Why do we think we die like this?

Scenes like the death of cyborg Roy Batty in Bladerunner expose our conditioning about life and death. That death will hopefully take us quickly and painlessly, even poetically. Or that death is a seperate experience from life, and that medicine will save us if we need it, a problem to be overcome and treated like a sprained ankle.

Our preconceptions are illusionary. In fact, this preconception is so strong we even extend this to our built systems and infrastructure.

Death is in the city

We’ve built our civilisations around the group, the village, the town, the city. Our rituals, practices and experiences of dying are intrinsically linked to the these built environments. So when we talk about problems of dying, we’re also really talking about problems of the city.

By 2030, 92% of us will live in cities

That doesn’t mean our current problems are the same as the old ones. But it give us context to understand how we got here. It’s really significant to consider this, because at its heart, the city is about people. According to the World Resources Institute, by 2030, 92% of us will live in cities. Dying is about people, and almost everyone will be living in a city.

The deathbed

Up until the early 20th century, we almost all died at home. Home was where death took place. It was where the individual — to an extent — controlled their death; the family cared for them, cleaned them, lived with their body after they died.

[The home] as a space of negotiation and compromise between one’s condition and one’s aspirations; about the house as the elementary particle of society, and a stage upon which, for millennia, the theater of everyday life has unfolded.

As Joseph Grima wrote in SQM: The Quantified Home, the home was stage for the theatre of everyday life, and for death. It is that stage that we need to rejuvenate and make prominent, because the whole cycle has been clipped and removed, sanitised, outsourced to professional institutions. We’ve moved from our family caring for us, to professionals caring for us.

The professional care of the dying, and importantly the spaces they use, is a recent change. It is often situated in a hospital or other medicalised space.

However, we can go back quite far into history – to the Middle Ages – to understand how the built space for dying was responding to particular challenges of the time. Used by pilgrims on the trail, these new Medieval hospices often mirrored what we’d consider contemporary hospitals. The Hospice in Jerusalem which operated from around 1160, had beds for over 2000 people, and had a death rate of 50 people per day. Staffed by dedicated carers, they tended the wounds and cared for the dying, who were thousands of miles from home. These rare buildings were the exception to our rule of death at home. The Hospice served soldiers and knights waging war, who required both religious and medical support for their wounds in the Holy Land. Back on home soil, most care for the dying was undertaken by those in the community; performed by healers and supportive people, not specialists.

Yet it was not only the buildings themselves – the hospices and hospitals – that changed the way we died, but with the general growth of cities themselves. London is an excellent example. It has been the source of innovation for centuries, and was often first around changes with health. The discovery and systematic treatment for cholera by John Snow in 1854 was at once an astounding result of overcrowding and disease, and yet an incredible feat of modern public health management.

Plague doctor, London c.14th century

For most of its history, London was a disease-riddled place, which has ensured that death was never far away. One of the most devastating periods of death in London was the Black Death. During plague times in the 14–15th centuries, it has been estimated that between 20–50% of the population were dying at any one time. Everything was strained: economics, politics, class structures even religion.

However, affected people were often only treated by local, travelling healers. A resulting sense of community defined by the healers was significant, because there was no real infrastructure for handling disease. Everything was localised, and the Church was often no help: religious belief was shaken to its core by the brutality of the disease. As a result, an entire industry emerged made up of dedicated people whose job was just to tend to the dying. The Plague Doctors would often be newly trained doctors, folk healers, or volunteers who would enter into contracts with the city to tend to the plague victims. They would tend to the rich and poor alike. Their role became so essential to European life during the time of plague, that they were often witnesses to wills, advisors on end-of-life care, and even performed autopsies. These community-based doctors moved between the fields of health, law and civil politics to provide the most essential and ungratifying work.

Another aspect to our life in the city defined by plague and disease, was the practice of burials and cemeteries. One immediate result of this rapid and unprecendeted level of death caused by infectious diseases in the city, was to rapidly scale up practices we had been using for thousands of years. Everything took on scale: the number of visitations by a travelling expert, the memorialisation of people in monuments, even the practices around burying of the dead. They all grew exponentially.

Laid to rest

Since time immemorial we have buried our dead. Evidence from Neanderthal remains show simple cave burials from over 500,000 years ago. We first started to bury our dead for two reasons: simply to avoid getting eaten by scavengers, but also to evoke animistic principles of returning to the earth, the earliest forms of religion practice. Where we first buried our dead in accessible caves or other ‘special’ locations in the landscape, we would soon over time bring them closer to our settlements and homes, building monuments to their memory.

In Greenberg, Solomon and Pyszczynski’s The Worm at the Core, they go so far as to suggest that it was in fact our rudimentary memorials to our dead that stimulated Man to move from roaming hunter-gatherer to rooted farmer. The fixed point of rock formations and fruit-and-grain offerings to our dead ancestors stimulated basic crop farming, and we eventually settled in and around our memorials. Our early death practices may have laid the seeds for our own built civilisations.

However, as our settlements grew, and became villages and towns, we kept our practices intact until they were unfit for our health. Because of the legitimate fear and effect of pestilence and disease from living in the crowded cities, we needed to create spaces away from the our homes and we began to create larger, dedicated spaces for the dead.

After the 15th century, we begin to see the rise of the cemetery, as cities for the dead. Creating in the landscape the typical formations and rows of the dead, enscribed and organised. The rich amongst us would build grand tombs and symbols of their success in life, like the pharoahs of ancient Egypt.

Yet even this practice became distorted over time. Once the city dwellers couldn’t fit in the local parishes in their neighbourhood, the cemetery then becomes a profitable endeavour, selling vital plots of land for the dead. This practice continues today.

The spaces we are laid to rest in, reflect the ways we die in general. We need to recognise the world is not the same as it was, with the rituals, conditions and beliefs that used to be held. Our cities have changed radically, and so have the ways in which we die. It is vital that we understand the real, current problems and causes of death.

New England Journal of Science

What we die of today

Our problems are not infectious diseases like diphtheria or tuberculosis. The problems in the 21st century are heart disease, suicide, Alzheimer’s.

In 1900, cancer and heart disease accounted for 18% of all deaths. Today, that figure has jumped to 63%. In addition to being responsible for a greater share of deaths overall, the absolute number of people being killed by these chronic conditions has also grown, from 201 people out of every 100,000 in 1900 to nearly 380 per 100,000 today.

Another subtle problem as a result of changing causes of death, is the way in which we perceive death happening to us. We may think of our future deathbed, perhaps contemplate our slow decline into the darkness. But if suicide and Alzheimer’s is really killing us, why do we think we’re dying another way?

Perhaps due to the fact the notion of the cinematic death permeates and persists in culture, and often supports the idea of a hero’s death, or noble death. It handily skirts around the idea that death is anything but horrible. The Greek and Roman idea of a good death was the genesis for a lot of these myths: even Emperor Augustus supposedly died mid-kiss.

This attitude is deep rooted – to support clean, noble deaths and ignore the possible reality – and it is factored into the most people’s understanding of how you die and where. Because we approach life from a particular point of view: you are living until you are about to die. It is a life-affirming attitude, but can result in shock if it comes true. This shock, this contrast of binary states leads to many problems, one of which is social death. Friends and family can often retreat from a loved one who is suffering from a long-term, terminal illness, shutting them out of their life over time, letting them go. The realisation that someone is dying, creates a tension about what a relationship is really for. This problem is compounded by the fact that modern medicine can often ensure a slow decline into death. We want to be with those that are alive, so when someone is not, it can create awful situations. This leads to a loss of the self. A loss of life-meaning, and social connection. It can be exacerbated by people around who cannot connect with the dying person. Social isolation is sadly common when we die.

Taken as a whole, when we want to tackle the problems of dying in 21st century — chronic disease, death denial, social death — we need to understand where this happens.

After the horrors of the First World War, death became a ‘hidden event’, occurring within a medical setting. By the mid-1960s, two thirds of all deaths occurred in hospitals or other places caring for the sick. As a result, we have as a society begun to forget that death is a daily, monthly, yearly occurrence.

Problems of accessibility

We can group a lot of these problems into larger themes of accessibility and time. To promote better ways of dying, people need better access to services, with opportunities to develop and engage with the issues around dying over time.

This may range from governmental or commerical services, or just come down to the access between people to simply talk about dying. Established taboos and a deeper engrained denial stop many discussions, and we need to find a way around that.

So who can access a good death? Rich people basically. After all, the pursuit of immortality has always been a rich man’s dream.

Bucket List Films

Take for example Bucket List Films: for a large fee you can hire a private film crew to follow you around and document your life. They give you the opportunity and platform to give your life meaning through passing knowledge down, and allowing you to connect with future family generations. If you can pay, you can have your grandfather’s words and pictures echo 100 years down the line.

Cryopreservation Unit by Taryn Simon

In the more recognisable sense, cryopreservation is of course, the classic rich man’s fantasy. Except, it is now quite affordable. You can take out a £100,000 insurance policy, which comes down to about £150 a month, to secure a space for your head. In this case science replaces religion: a promise of a life renewed, based entirely on good faith.

Problems of time

We are also faced with the problem of time. Who has either the time (quality) or enough time (quantity) to consider dying? Who is even thinking about dying?

Well thankfully, there are more and more people. There are two interesting developments over the last few years. The Death Café, as an important to think about the creation of spaces to talk, and the emergence of Death Doula. These informal carers go a long way to re-introduce a community death person, into our modern society. Working much like a birth doula – a non-medical person who assists in child birth – they provide emotional support, physical assistance for the dying, as they would the newborn.

Dying in the city, today

These last two emergent trends — accesibility and time — give us a framework to how we can practically discuss how the city can help us personally, and in a larger civil sense. So if we consider, dying in the city today we can conclude on a few things.

21st c. problems with 21st c. ambitions

We have 21st century problems: long-term chronic disease, an over-reliance of medical institutions for treatment and belief systems. But we have 21st century ambitions: some promising attempts to combat the denial of death, a desire to localise the experience and normalise dying experience to a community scale, and a drive to discover and create appropriate death rituals for the modern age.

Smart Citizens: Connected and compassionate

What can we consider for possible 21st century solutions? We could put forward some of the benefits that come from ideas around smart cities, such as instantly connected infrastructure, data-driven responsive, distributed services and systems.

Or, we could focus our attention on the citizens of those cities. The ones that appropriate that smart city technology, adapt it for their needs, making the city a space for a better society, at the human level.

It is not enough to simply “make the invisible, visible”. But change might happen through creating convenient, accessible ways to try something different, and then multiplying that through social proof and network effects, reinforcing through feedback.

Dan Hill, the urbanist has helped popularise the term of smart citizens, in response to the often grand claims for the larger smart cities. His is an inherently more compassionate approach, which, with our view on problems around dying, we can heartily get behind.

This revealing of the city system, through its people, reinforces the notion that we need to bring death from the shadows, and bring it both into the home, and into the common spaces. The smart citizen, as we naturally occur, form a small piece of the larger city, but they form a social service which is fundamental to solving the problems we are facing.

Smart citizens value empathy, dialogue and trust; unremittingly share their knowledge and their learning, because this is where true value comes from; value access over ownership, contribution over power.

Frank Kresin simplifies this into concepts that helpfully support a lot of the possible solutions. This ground-up approach provides lots of opportunity:

So one can design a system, or culture, in which individual actors are aware that they are part of a wider interdependent system of complex movements, with positive end results — safer, smoother — at a systemic level as well as individual.

Dan Hill again, sums this up nicely. It’s a notion that support a modern death because it positively plays into the ideas of dying as a personal and wider, public process as well. This interdependency is vital. We can quickly build a framework that suggest the smart citizens is a large component of a 21st century solution to our 21st century problems.

The city as the citizen

We then need to define what the conditions of a good death might be, and how they could be meshed with some of the ideas of a smart citizen. We can ask, how can we all die well now, and in the future? What about…

  • Community-based dying, with a new class of agile, responsive carers that are trained in the complex needs of the dying;
  • Open access to contemporary services that can best support the holistic needs for the family over time, beyond death;
  • Building spaces to confront death denial in a constructive way;
  • Adapting existing spaces to enable more meaningful death in the public, moving from closed hospitals and hospices, and beyond social media to something more open and concrete;
  • Continue to speculate about our personal futures through public discourse and engagement.

A list like this puts forward the ideas that have been established, into a set of possible starting points, that we can use to build better ways to die.

Death in the open

When it comes to dying, we need to move away from a reliance on institutions and spaces that are built for the ill-who-die, or expectantly-dying, to diffusing the experience of death, through our daily lives once again.

Not in the way it used to be, where infant mortality and disease marked daily life. Rather that a connected modern city dweller understands their contribution to improving the lives of themselves, their families and those around them, by engaging with the natural rhythm of life: that we die, we will die surrounded by each other – either at home or in the city – and that we can make the experience more compassionate, rewarding and enlightening.