Integrating Dying Into Living

Hello. I have the unenviable privilege of being both British and Scottish, so try to reset your filters if the accent gets a bit much.

I’m going to talk about a couple of things. I’ll start with power and control before moving into design.

We’ve been talking about this all morning, but since the 19th century, the healthcare professional, particularly the doctor, has been considered the expert in death.

You’ve had the power. You’ve had the control. You put us on pathways, diagnose us, and look at us through what Foucault called the “clinical gaze.” As a non-clinician, that ability to see the reality of things is incredibly powerful.

And you give us pain relief.

One of the most remarkable developments since the 19th century is the ability to help ensure that, when we die, we can do so without pain.

But that wasn’t always the case.

Before the 19th century, the priest was the expert in death. Priests had the power and control. They sat at your bedside and guided you into the next life. That authority wasn’t really challenged.

They didn’t have pain relief, but they could say, “Okay, this is really painful. You’re going to suffer. But what comes next will make it all worthwhile.”

My point is that, in the 21st century, neither the doctor nor the priest should hold all the power and control.

It should be us.

It should be people and communities.

The individual is the expert in their disease and illness. And the power we have as communities to support one another through the end of life is incredible.

That’s the challenge I want to put forward today. This is what we need to do in the 21st century, and I think design has an important role to play.

Death involves everyone: the patient, doctor, nurse, healthcare system, cleaner who comes into the room, caregiver, family, and neighbors.

It involves absolutely everyone.

As designers, we ask how we can design accordingly and include all of those people.

We often talk about patient-centered care. BJ Miller alluded earlier to relationship-centered care.

That’s what we do at the Helix Centre.

The Helix Centre is a design studio embedded directly inside St Mary’s Hospital in London. We’re right next to where Alexander Fleming discovered penicillin by accident, and that spirit of innovation is central to what we do.

We sit inside a strange glass-and-wood box that is often mistaken for either a sauna or an MRI scanner. Then people discover it’s a design studio and think it’s even stranger.

We work as a unique team to address some of the biggest healthcare challenges in the United Kingdom and internationally.

Our team includes designers and technologists like me, sitting alongside oncologists, physiotherapists, and surgeons.

We work directly with patients, the public, and frontline healthcare staff. That is fundamental to tackling the most complex problems in healthcare.

Our projects range from pediatric drug safety and stroke rehabilitation to bowel cancer screening. But one of the biggest areas we work in is end-of-life care.

When we began our end-of-life care project a couple of years ago, we started in our own environment: the hospital.

We asked, “How is death handled in the hospital?”

It turns out, pretty badly.

There are many problems, but one thing stood out as we spoke with nurses, doctors, patients, and families.

A huge number of people who die in hospitals arrive through emergency admissions. They are carried in by ambulance and die through that experience.

Sometimes that is unavoidable. A person may have been in a car accident.

But many older people, people living with frailty or dementia, and people approaching the end of life enter the hospital as emergencies and ultimately die there.

We explored this using human-centered design principles. That means spending time in these environments, digging around, observing, and seeing how things actually work.

We found something called the DNACPR form, which stands for “Do Not Attempt Cardiopulmonary Resuscitation.”

There is an important difference between the United Kingdom and the United States here.

Essentially, this form says that if your heart and lungs stop, clinicians will not attempt to resuscitate you.

The decision is made because they believe resuscitation would not be in your best interests. You may not survive it, or you may survive with brain damage and very little chance of meaningful recovery.

It is an important document intended to prevent further harm.

But it sits inside a medical record and is signed by a clinician.

In the United Kingdom, a patient cannot demand a treatment. You cannot demand CPR. The clinician makes a decision based on what they believe is in your best interests.

This leads to many problems.

A clinician may complete the form at two in the morning or four in the afternoon and place it in your medical records.

They may or may not tell you that the form exists.

They may or may not tell your family.

That has led to serious battles in the United Kingdom’s High Court. There have been many cases in which families weren’t told that their loved one would not be resuscitated if their heart and lungs stopped.

The form was originally created in the 1960s to address cardiac arrest. But as we’ve medicalized death, its use has expanded.

A frail older person admitted with a broken hip may now have this form.

We thought, “Oh my God, we have to do something. What can design contribute?”

Thankfully, about 40 other organizations in the United Kingdom had already been conducting research and building evidence toward a solution.

That solution is called ReSPECT.

Yes, it is another form. But get past that, because it is fundamentally important.

It includes the CPR decision, but that sits near the bottom.

The rest of the form builds a comprehensive picture of what a person wants during an emergency.

Our major contribution was helping translate the patient’s and family’s needs, wishes, and preferences into a clinical document.

We understood that clinicians like to work in order, starting at the top of a form and moving toward the bottom.

With ReSPECT, the clinician cannot move beyond a central section without having a conversation with the patient.

They have to ask, “Would you prioritize life-sustaining treatment, or would you prioritize comfort-focused treatment?”

The patient can then ask, “What does that mean?”

That begins a conversation about comfort-focused and life-sustaining treatments. The patient can indicate where their preferences fall, building a picture of what they would want during an emergency.

Previously, those conversations often weren’t happening.

We designed the conversation into emergency care planning.

What became really interesting was realizing that we weren’t simply designing a form. We were redesigning the relationship between clinicians, patients, and families around what someone wants during an emergency.

We can’t change the clinical realities, but we can create better ways to have conversations at the end of life, even during an acute emergency at two in the morning.

That is a deeply traumatizing moment for many people.

We’re trying to build in conversation and dialogue, and to help clinicians have these discussions, because clinicians often find them just as difficult as patients do.

That is one example of what we do at the Helix Centre through our end-of-life projects.

Another area I’ve been working on is more of a personal mission.

There are two unavoidable things in life: technology and death.

I’m interested in how we can use technology more effectively to help us live with death and dying.

A couple of years ago, my friend Alex and I started a company called Humane Engineering. We wanted to explore how technology could address important, underserved issues.

It began when an interesting phenomenon emerged: teenagers were taking selfies at funerals.

People became really upset.

“Oh my God, these kids are so vain. They’re so disrespectful. They don’t understand what they’re doing. This is awful.”

But I kept thinking, “This is completely normal.”

These kids are 14 or 15 years old. They take selfies all day, every day.

What is unusual is that they’re attending a funeral for the first time.

This is their way of processing it. It’s their way of saying, “I’m here. I’m doing this. This is weird,” and reaching out to friends for support.

But the technology wasn’t built for experiences like death, dying, and grief.

We thought there had to be a better way.

This is a kind of silent crisis.

Alongside death education, talking with children about death is a massive challenge.

In the United Kingdom, there is roughly one child in every classroom who has lost a parent. Millions of children have lost someone they love.

From my own experience of losing a friend when I was 17, I knew this was a significant problem.

Bereavement during childhood can have lifelong effects. It can affect mental health, school attendance, education, and even involvement with crime later in life.

So we asked how we could support young people using technology they already engage with every day.

That’s why we created Cove.

Cove is a music therapy app. It allows people to use music to express complex emotions and create a personal journal.

It helps them release something they are feeling, which can be incredibly difficult during bereavement.

Young people often find it hard to talk to others or say how they feel.

We believe music has tremendous potential. I think we’ll hear more later about how powerful music can be in relation to death and dying.

Cove has been so successful in supporting young people that the National Health Service is funding us to expand it.

Starting next year, general practitioners and family practices will be able to prescribe it to families.

Imagine that: prescribing music as medicine.

I think it’s fantastic.

What really makes a difference is when people write to us and explain how making music helped them process their grief and bereavement.

That makes all of the work worthwhile.

I’ll close with something that may seem obvious.

For most people, the experience of dying is filled with uncertainty and dread. It may be the most terrifying thing we ever experience.

We have to acknowledge that. There is no way to design it away completely. It is going to happen.

This is the Ars Moriendi, which appears in your booklet. It was a book from the 1400s and one of the earliest books produced with movable type after the Bible, itself an innovation in design.

We have been doing this for centuries.

The book allowed people to guide themselves toward a good death without a priest or the Church.

That was incredibly transformative. It represented a shift in power and control.

It deeply upset the Church because it no longer held exclusive power over death. That power was now in the hands of the people.

We need to maintain that spirit as we move through the 21st century.

At the same time, we have issues like this syringe driver. It is introduced into the home of a dying person, and that person may die a few days later.

Families may think, “That machine did it. That killed my mother.”

People are frightened by these machines that care for us.

In my opinion, we need to stop relying so heavily on machines at the end of life.

I would prefer a loved one to administer pain relief rather than a machine.

Death is a four-dimensional experience. It is physical, spiritual, social, and psychological. All of those dimensions exist together.

So when we ask how we will address death and the end of life in the 21st century, I have to say to the doctors in the room: it isn’t only your job anymore.

It belongs to all of us.

I think design can contribute to that. This must be a joint effort.

Design can help make death a social and human experience again.

We need to deprofessionalize it and share the knowledge held by professionals with everyone.

We need to demedicalize it. Pain relief should not always have to remain solely in the hands of a doctor. Other people can be trained to administer it and ensure that the person they are caring for receives the love and attention they deserve.

This is a huge conversation.

Please, let’s keep it going.

Thank you.