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In the beginning I was just a dad who fell over a bit and then couldn't drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It's obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It's half-term and Tom, my seven-year-old, has wandered out into the garden. He's smiling, looking back at the house, as he points out a squirrel to someone standing inside. There's adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I'm in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It's positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It's gusty and leaves are twirling down from an ash tree.

I realise I've been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I'm here, I can see that we're all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn't.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders' webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven't reached this stage yet. Death and dying can be known. It doesn't stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the "[va]nilla" on offer but, silent and motionless, I don't know if he noticed, and then I heard him padding away into the next room.

I see three people moving and turning together - and it's no longer breaking my heart

I can't be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me - held on to it - for days, as if I wasn't just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there's plenty of spare tubing lying around. This place is like a fisherman's cottage but with coils of plastic everywhere - in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy's marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I'd imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I'm very still with this disease now: I'm an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o'clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together - and it's no longer breaking my heart. It's just sad and comforting. I didn't expect the end of my life to feel like the future.

I see and hear my family clowning around and I want so much to be in there with them - teaching my children to brush their teeth in the style of a camel. Instead I'm unnaturally still - observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I'm not clowning around any more; I just see it going on - how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I've never got over that loss.

I'm fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I'm assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I've been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It's really hard to cry when you rely on a mask for air. I use a mask that's attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can't track the progress of my pupils, so crying is a form of incapacitation. It's so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It's not that we're always crying together. It just happens sometimes. Recently Gill's been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it's the present. It's all been leading up to this. Sad but no longer broken. Here with Gill. It's a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

* A Short History Of Falling: Everything I Observed About Love Whilst Dying, by Joe Hammond, is published by 4th Estate.

* Comments on this piece are premoderated to ensure discussion remains on topics raised by the writer. Please be aware there may be a short delay in comments appearing on the site.

If you would like your comment on this piece to be considered for Weekend magazine's letters page, please email weekend@theguardian.com, including your name and address (not for publication).
Topics

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Joe Hammond's final article: 'I've been saying goodbye to my family for two years'

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In the beginning I was just a dad who fell over a bit and then couldn't drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils.

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Advance Decisions

Who are we - and what do we do?

We are a charity working to raise awareness of Advance Decisions ('living wills') and to help people complete them. Find out more about us and how we can assist you in writing your Advance Decision.We also provide training on Advance Decisions for GPs and other healthcare professionals; and are involved in research.

What is an Advance Decision?

An Advance Decision is a document in which you set out your end-of-life choices. It is designed for when you can no longer communicate these choices - such as when you're unconscious, or in the late stages of dementia. For example, if you don't want a ventilator or a feeding tube in such circumstances, you can refuse these treatments now. Advance Decisions are legally-binding, provided they are properly completed.

How can I make an Advance Decision?

Contact us! We can help you think through the issues, and make sure that the wording you use reflects your wishes and meets legal requirements. You fill in a simple form (available above - under ' Make an AD '), sign it, and get your signature witnessed. You don't need a solicitor.

Will my Advance Decision work?

Your Advance Decision will only work if people know about it. We can advise you about how to make sure they do. See also 'Make an AD - Next Steps ' above

For more information

See our frequently asked questions and resources pages.

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ADA is a charity working to raise awareness of Advance Decisions ('living wills') and to help people complete them. Find out more about us and how we can assist you in writing your Advance Decision.We also provide training on Advance Decisions for GPs and other healthcare professionals; and are involved in research.

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But who gets the vase? The day my sister and I chose what to keep when our parents die

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Cheerful at having a joint hobby, my parents distributed stickers for us to put on their keepsakes. We tossed a coin for who got the sewing cabinet

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A chat about life's end over coffee and cake doesn't sound like everyone's cup of tea. But could it be a way to get people talking about a subject we can't escape and is often avoided?

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The role the city plays with the dead and dying

The reality of dying

The city has changed the way we die as individuals. But 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. Because in this age, death is now a slow process and our lives are characterised by long term, chronic disease.

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.

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:

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.

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.

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: y ou 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.

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.

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.
Delivered as a lecture at the AA Night School, 31 October 2014 at the Architectural Association, London.

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Open Plan Dying - Being and Dying - Medium

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The reality of dying The city has changed the way we die as individuals. But 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.

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BBC Two - Horizon, 2019, We Need to Talk about Death

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Dr Kevin Fong makes a personal journey through the moral questions about death.

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Providing the missing piece

"70% of people would like to die in their homes, but only 17% do."

Doulas are not a new idea. In indigenous cultures around the globe, and for thousands of years, people have stayed in their homes to die, looked after by their family and local community. In the western world, this concept has been undermined by a gradual shift towards hospitalisation, taking responsibility away from the person and those around them. However it's possible to make death an intimate, spiritual and peaceful experience for everyone involved, whether medical support is required or not.

Doulas are trained in supporting people at the beginning (birth doulas) and end of life. 'End of Life Doulas' walk alongside the individual, their family and their community as an informed companion. They are sensitive to practical, emotional and spiritual needs and are a consistent and compassionate presence, with knowledge, experience and understanding. Their role is to preserve the quality of wellbeing, sense of identity and self-worth from the moment of diagnosis. They do not replace medical care, but facilitate access to resources that are available and also recognise the frequently intangible elements of life that can have a major impact on the family as they strive to maintain the best quality of life possible.

We know that taking care of someone at home is a big decision for a family. We know too that the end of life can be a lonely experience for those who are alone, in nursing homes or even in hospital. Our aim is to support people to live their life as meaningfully as possible right to the end, while making it more comfortable and natural for them to die at home if they want to.
10 things about being an EoL Doula

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Providing the missing piece "70% of people would like to die in their homes, but only 17% do." Doulas are not a new idea. In indigenous cultures around the globe, and for thousands of years, people have stayed in their homes to die, looked after by their family and local community.

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Read all about it and find a Death Cafe near you. Or start one!

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At a Death Cafe people gather to eat cake, drink tea and discuss death. Our objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.

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Dying people are taking their own lives here and abroad. The current law offers them no protection or support. Join us and help change the law.

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Grief can be overwhelming - you don’t have to deal with it alone. Cruse Bereavement Support is here. Call our helpline or chat online.

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Advance Care Planning with people from South Asian Communities

We partnered with Subco Trust and the University of Bristol's Good Grief Connects project to co-produce advance care planning workshops for South Asian elders.

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We want you to be in control of your end-of-life decisions. Because there is no-one better to make them.

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A Discord chat room for UK death positive folks where you can discuss anything from death in films and popular culture to asking real questions about planning for death in the UK.

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This section explains what an Advance Decision (Living Will) is, what it can and cannot be used for, and how to make one. The information is for people living in England and Wales.

Advance Decision (Living Will) - what is it?

An Advance Decision allows you to write down any treatments that you don't want to have in the future, in case you later become unable to make or communicate decisions for yourself.

It will only be used if you can't make or communicate a decision for yourself. The legal name is an Advance Decision to Refuse Treatment, and it's also sometimes called a Living Will or an Advance Directive.

Advance Decisions are legally binding in England and Wales, as long as they meet certain requirements. This means that if a healthcare professional knows you've made an Advance Decision, they have to follow it. If they ignore an Advance Decision then they could be taken to court.

In this section:

More information
If you live in Scotland, read our information about Advance Directives or Welfare Power of Attorney. If you live in Northern Ireland, please see our information about planning ahead here.
We also have a separate factsheet for people with a mental illness, or a history of mental illness, who want to understand when their Advance Decision will be followed.

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Advance Decisions (Living Wills) | Compassion in Dying

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An Advance Decision (Living Will) is a legally binding way to refuse treatment. Find out how to make one and download our free forms. We also provide tips for talking to your doctor about your treatment wishes, and explain what to do if there is a disagreement about someone's treatment when they have previously made an Advance Decision.

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Power of Attorney | Legal issues | Age UK

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There are a number of reasons why you might need someone to make decisions for you, or act on your behalf. A power of attorney can make decisions for you.

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- News story

The Public Guardian for England and Wales and Chief Executive of the Office of the Public Guardian, Alan Eccles, has announced his intention to retire in June 2019.

- Blog post

Ashok Chopra looks at how OPG is trialling a service that could improve the safeguarding of people who may lack mental capacity

- News story

The Office of the Public Guardian (OPG) has updated its guidance on how to request a search of its registers.

Latest from the Office of the Public Guardian

What the Office of the Public Guardian does

The Office of the Public Guardian (OPG) protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance.

OPG is an executive agency, sponsored by the Ministry of Justice.

Read more about what we do

Contact OPG

Make an FOI request

1. Read about the Freedom of Information (FOI) Act and how to make a request.

2. Check our previous releases to see if we've already answered your question.

3. Make a new request by contacting us using the details below.

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The Office of the Public Guardian (OPG) protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance. OPG is an executive agency, sponsored by the Ministry of Justice .