Designing a More Human Death

This is me back in the day. I was a brand-new intern.

I joined this army of doctors to save patients’ lives in the heroic war against death.

But during my third week of internship, I sustained my first casualty.

I was assigned to a small hospital in central Pennsylvania and working on the inpatient medical service. During a 24-hour on-call shift, I got a call from a nurse in the middle of the night.

Because it was only my third week out of medical school, I panicked.

My patient was having difficulty breathing. We placed a high-flow oxygen mask on him, but he became increasingly agitated and lethargic.

I was terrified.

We could not get enough oxygen into his lungs. After a failed intubation and a surgical airway, he died before dawn.

After I rounded with my medical team that morning, I retreated to a hospital bathroom and cried.

I thought I had made a terrible mistake by becoming a physician. But I compartmentalized my emotions and carried on.

This is from the novel The House of God. It captures the absurdity of life in hospitals. It’s a book many of us read as medical students or residents, and it shows the brutality of medical training.

As a resident, I went on to care for many more patients. Many of them died, but I don’t remember ever crying again.

Maybe I was too emotionally or physically exhausted.

Maybe I was becoming less human.

As human beings, death unites us. It is the common denominator.

In our society, we have designed the experience of dying. Doctors are the principal architects of the medicalization of death and dying in America.

Over the past century, doctors have become the experts on death.

We orchestrate dying as a series of medical events: symptoms, diagnosis, treatment, admission to the hospital, discharge, rinse and repeat.

Doctors try to extend life at all costs through technology. We value the quantity of life over its quality.

Yet even though we are the architects of the dying experience, most of us receive little or no training in what it means to die well.

Expertise in end-of-life care is siloed within a small community of palliative care specialists.

But why can’t palliative medicine simply be called medicine?

Why can’t every doctor, from the orthopedic surgeon to the emergency physician, feel comfortable talking with patients about the end of life?

What would it look like to view death and dying as a design challenge rather than only a medical one?

We might ask questions like these:

How might we demedicalize death?

How might we change the narrative around death and dying?

How might we shift expertise about death away from physicians?

I believe design can help us address these challenges.

Design can humanize death and dying.

At my medical school in Philadelphia, we use design thinking to apply creativity to medicine. We were the first program at the medical school to teach students how to apply design thinking in healthcare.

We define design thinking as an approach to generating ideas and solutions that serve human needs.

Design thinking makes the creative process less opaque. It helps us rewrite the rules of business as usual.

And I want to emphasize that design thinking isn’t only for designers. Any one of us can take part.

These are the design principles we apply through our health design thinking program. We teach future doctors to think like designers and apply these principles to healthcare.

We want the experience of healthcare to be more human for both patients and physicians.

Anyone who works in healthcare knows it can be a very toxic environment.

In hospitals, for example, we use a secret language.

In the emergency room, you might hear the phrase “moving the meat.” It refers to being efficient, diagnosing and discharging patients as quickly as possible.

I am guilty of using that derogatory phrase.

I am also guilty of labeling my patients with language like this.

Working in the meat grinder of the hospital is hard. I have experienced symptoms of burnout, including a loss of empathy and a sense of becoming dehumanized.

Burnout is an epidemic in American medicine, and everyone loses, especially patients, because burned-out doctors deliver burned-out care.

When you experience burnout, empathy goes down the drain.

Empathy is a core principle of design thinking. We can define it as the ability to recognize and share the mental state of another person.

This is a tent encampment in Kensington, Philadelphia. We have many of these encampments in the neighborhood.

People travel to Kensington from across the city, and even from other states, to buy and use heroin.

What is the mental state of a human being living with addiction in one of these tent encampments?

What is the mental state of someone who comes to me in the emergency room after overdosing on heroin?

Design helps me rehumanize my patients.

Instead of asking, “Why are you here again after overdosing on opioids?” a more empathetic question might be, “What happened in your life that led you here?”

To humanize my patients, I knew we needed to move beyond the walls of the hospital and venture into the community.

We formed a team of a dozen architects, designers, medical students, and undergraduate students to launch a program called Collab Philadelphia.

One of Collab’s goals is to open dialogue in the community and change the narrative around the opioid crisis.

Stigmatizing attitudes toward people living with addiction have stifled public health efforts to end the crisis. Overcoming that stigma is central to addressing the epidemic.

In a similar way, conversations about death and dying are also stigmatized.

My friend Adam Hayden, who is living with brain cancer, says, “It’s important that we bring death out of the shadows of taboo.”

Last summer, we held a design thinking workshop on reimagining death and dying.

A design workshop is a structured series of activities that prompts people to think creatively, share ideas, and make those ideas concrete through simple prototypes.

More than 40 people attended. We were surprised by the diversity of the participants and by how deeply they engaged with the subject.

They shared their own beliefs and experiences around death and dying.

Because empathy is a central ingredient in a successful design workshop, charrette, or sprint, I reached out to my friend Adam again.

Adam is a father of three boys from Indiana. He has a graduate degree in philosophy.

At 35, he learned that he had glioblastoma, a highly aggressive form of brain cancer.

Using his iPhone, Adam recorded a five-minute video about his thoughts on death and the way his diagnosis had affected his life. We shared the video with the workshop participants.

To help everyone become more comfortable discussing their own mortality, we asked them to write an imaginary obituary for The New York Times.

Then we invited them to brainstorm around the problems associated with death and dying in America.

We were surprised and impressed by the rich diversity of cultural perspectives.

The invitation to create a simple prototype led to ideas ranging from a child-friendly curriculum about the cycles of life and death to new cultural traditions around dying.

We live in a death-denying culture. It is difficult to have these conversations.

But through our design workshop, we brought 40 strangers together to consider how we might redesign death and dying.

This is my son, Nolan. He’s kind of cute.

When Nolan was three and a half years old, we shared a traumatic experience.

Death nearly met me as the father of a young son.

As a physician, I had cared for many patients who died. But I never thought death would visit me personally, as though my white coat were a force field protecting me from it.

On a hot summer day, our family was having lunch in a friend’s backyard when I saw something at the bottom of the swimming pool in my peripheral vision.

It was Nolan.

I dove in and pulled him out.

His lips and skin were mottled blue from oxygen deprivation, like the patient I had cared for during my internship.

I began the familiar steps of resuscitation. Except this time, the patient was my son.

Fortunately, Nolan had been submerged for only a brief period, and he recovered without harm.

He is 10 years old now, and he vividly remembers his near-drowning experience.

He’s a funny guy. He jokes about it.

Last month, he said, “Hey, Dad, I want to tell you something about that experience. I went into death’s house, robbed it, and survived.”

That traumatic event has allowed my son and me to have open conversations about death and dying.

They aren’t morbid or dark conversations.

We know death will come for us, and it’s okay to talk about it.

I believe that to live well, we need to design how we can end well.

And in this moment we are all experiencing together, I feel optimistic about death and dying.

We have the opportunity to reframe our understanding of it, demedicalize it, and humanize the experience of death.

Thank you