Care, Reconsidered

Filmmaker: We are here today to share our curiosity about care.

Care is so often bound to notions of healthcare. Perhaps we can reconsider what care means.

I am a filmmaker, designer, strategist, and professor at Parsons School of Design in New York City. For the past 30 years, my work has involved ethnography, media, and creative interventions for positive change.

Service designer: I am a service design strategist and educator. My work explores how even the smallest gestures, when applied at the scale of a system, can radically transform the human experience.

Over the years, I have investigated systems-oriented design within economics, education, and, most arecently, healthcare.

As the creative lead of the Design Innovation Group at Memorial Sloan Kettering Cancer Center, I lead a team that uses design to better understand, communicate, and shape the experience and delivery of cancer care.

We envision environments, services, tools, and artifacts that pose a central question:

What would cancer care look like if it were truly human-centered?

Filmmaker: My recent work, The End-of-Life Project, grew out of four years spent with five individuals at different stages of dying.

Along with my collaborator, Pavel, I documented hundreds of hours of presence at the end of life.

That fieldwork resulted in an art installation, a feature-length film, and the continuing development of tools for design research and education.

In preparation for the project, we trained as end-of-life doulas.

Along the way, many people asked me why I had moved into this work. What made me choose it?

There were many reasons.

Only several years into the project was I reminded that, in 1985, I was a 21-year-old gay man living in New York City. That was a very particular time and place, and my relationship to my own mortality was profoundly shaped by it.

Our filmmaking uses an immersive, participatory approach to time and space.

The work invites viewers to explore their bodies, their senses, and their ability to be fully present in relation to many things, including their own mortality.

Western culture often conflates privacy with the marginalization of people who are dying.

We create many forms of distance in our resistance to mortality. During our fieldwork, we became increasingly interested in our own visceral responses to death.

We became intrigued by the space between us, the filmmakers, and the dying person.

That space is time.

We were able to remain with people through what they could say or could not say, and through what they could do or could no longer do.

In her book No Place for Dying: Hospitals and the Ideology of Rescue, Helen Stanton Chapple writes that a distance, and often a tension, exists between places that support dying, such as hospice and palliative care, and the broader social invisibility and dismissal attached to those places.

We often characterize that seclusion as privacy.

But this raises serious questions.

How do we draw the line between public and private, or between those who can be rescued and those who are dying?

How does American culture benefit from and reinforce the removal of dying from public life?

And how might the answers illuminate the marginalization of people who are dying?

We do not handle endings especially well.

Endings are hard: the end of a day, the end of a season.

How might we approach the end of treatment or the final phase of life?

How do we recognize and honor the end of a moment? How long do these moments last? Minutes, days, months, or years?

When an ending arrives, how might we mark the transition?

Could the final moments of life be better supported if we learned to honor and navigate the other transitions we encounter?

The end of our working lives. The end of our childbearing years. The end of a relationship. The end of what had once been a good time.

How do we care? What might we learn from endings together?

Service designer: Together, John and I teach a graduate studio course at Parsons called Design for Living and Dying. It explores how design might shape our systems of care.

We examine the visceral experiences of serious illness that most of us will encounter from one perspective or another.

We embrace the fact that every one of us will eventually die and address how these experiences are likely to unfold through circumstances that are unplanned and beyond the limits of conventional preparedness.

We bring design into these contexts because they are among the few experiences that are truly universal.

Our studio places particular emphasis on expanding our understanding of care.

To paraphrase Annemarie Mol’s book The Logic of Care, care is not a matter of making perfectly argued individual choices. It grows from continuous, collaborative attempts to adapt knowledge and technology to our bodies, our senses, our full humanity, and the complexity of our lives.

An increasing number of options can create an illusion of freedom, but that is not always what genuine care requires.

Our work at Parsons examines human relationships within systems and services, carefully considering the experiences of everyone involved.

Through interactive workshops, inventive research tools, and creative uses of media, students engage diverse stakeholders in a co-design process.

Patients, hospice caregivers, nurse practitioners, palliative care physicians, behavioral psychologists, family and friend advocates, oncologists, and nonclinical care providers come together.

They listen to and witness different perspectives within complex systems of caregiving. They develop a deeper understanding of competing priorities and points of view in order to discover and design meaningful change.

Care is how we show up for one another from a place of shared humanity, before our roles, titles, or expertise.

When do we learn the gestures that define care throughout our lives?

When does our capacity to care begin?

How do we develop the capacity to protect and be protected, to nourish and be nourished, to advocate and be advocated for?

To teach and learn. To trust and be trusted. To listen and be listened to. To assist and be assisted. To hold and be held.

I want to be cared for while maintaining my dignity, my agency, and my whole self.

I want to be cared for while continuing to participate fully in the world.

Do we have the capacity to recognize opportunities to care for people as they truly are?

Can we care for what they uniquely need, for their goals in the present and future, and for the values that shape how they see the world?

Can we care for the person rather than the patient?

It is our job to care.

And beyond our jobs, it is our responsibility to care.

Who will you be in a moment of profound need?

Filmmaker: When we push dying to the margins, might we lose the opportunity to experience and learn from the slowness that allows wisdom to flow freely?

Older adult: Creating this has helped me maintain my sanity in the nursing home.

Believe me, aging in a nursing home is not easy.

That is why we are trying to think ahead. Do we want to spend the final years of our lives in California, New York, or Massachusetts?

You should think about it before the decision overtakes you and you suddenly find yourself in a place you have never examined.

It can feel like a prison, particularly when people ignore your wishes or treat you without respect.

It is terrifying.

But the boys were there with us. Suddenly, they were responsible, and they did the best they could.

So act before it happens. Otherwise, suddenly you are 75 and have nowhere to go.

When you look ahead, you may be able to avoid that.

For wealthy people, it may be less of a problem. For others, finding the right place can be extremely difficult.

You need to understand what people actually do there from morning until night.

Do they offer exercise? Do they encourage creative activity? Or is it simply walking and talking?

Having lived through it, I cannot tell you strongly enough that you, your pets, and your children must all be welcome there.

Thank you for your help.

Thank you.