Solving for X at the End of Life

— In interviews with people who were dying, we learned they wanted to mark their final days with meaningful experiences and leave their affairs in order. It’s time to reset logistics, last days and legacy.

By Thomas Kamber

He died fuller of faith than of fears,
Fuller of resolution than of pains,
Fuller of honour than of days.
Inscription, Westminster Abbey, 1631

Why do we so often die badly? How does it happen that so many of us arrive at the end of life unprepared for the journey? Somehow, we are stumped when it comes to creating a better model of dying. Our unique qualities as individuals are lost in the processes of medical institutions and funeral homes. For those facing our last days, we have a pretty good sense of what’s involved.

Twenty years ago, I started a nonprofit organization called Older Adults Technology Services (OATS) based in New York City that helps senior citizens build new models of aging while learning technology skills. We use design thinking methods to create new programs for social impact, using approaches like co-creation, prototyping and customer satisfaction metrics.

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum.

Recently we turned our innovation lens toward what was happening with older people in end-of-life situations to see if we could design new programs to help them. Using a design thinking methodology, we met with people who were dying and asked questions like, “What is a good day like for you?” and “If you could change one thing about your end-of-life process, what would it be?”

We met with people in their hospice beds, in their homes, and on one adventurous occasion, in the Fabergé room at the Metropolitan Museum. Some had been told they had months left, while others were living with just a few weeks in their prognosis. We visited other hospices around the country and spoke with social workers, chaplains, elder law attorneys and service providers.  We read books on death and dying by Caitlin Doughty, Atul Gawande and Richard Rohr. We had weekly review sessions and talked to experts on business planning and branding and customer experience design.

We Are Failing at Dying

Here is what we learned.

We are failing at dying. Instead of a time for growth, deep connection, reflection and deliverance, our ends of life are consumed by petty distractions and institutional imperatives. The dying people we interviewed had not given up on life; rather they were full of desire to mark their final days with meaningful experiences and leave their affairs in order.

Yet almost everyone expressed sadness and frustration that they lacked a path for the right kind of death, the kind of passing that would reflect well the kind of life they had lived and the essence of the person they had become.

People described an entrenched group of institutions, resistant to change and wielding enormous power, which have grown to dominate the last stage of life — hospitals, funeral homes, home care agencies, religious organizations. When asked what they wanted instead people asked for three kinds of help: logistics, last days and legacy.

We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

The Burden of Unmet Tasks

“Do you know someone who can come clean out my attic?” asked one woman in her fifties, fighting cancer and concerned that her overworked and grieving husband was sinking under the weight of daily tasks such as lawn mowing and housework. It was a startling response, in a bedside interview, to the question, “what’s most important to you now?” We were expecting ruminations on the duration of the soul, and instead people were preoccupied with getting the sheets clean and arranging pet care.

Logistics, it turns out, are top of mind for people who are dying. One woman spoke of her satisfaction in having arranged her funeral details and even set aside a dress to wear in her coffin. In an echo of Maslow’s famous hierarchy of human needs, the quotidian tasks form the base of the pyramid, and it seems difficult for people to elevate their thinking while still burdened with a laundry list of unmet tasks.

Many people commented on the need for legal help with logistics; writing wills, advance directives, health care proxies and financial plans. For many people, procrastination on legal matters resulted in family conflicts, loss of control over health decisions and anxiety about financial losses.

Unfortunately, once people were already in hospice, it was sometimes too late to interview lawyers and schedule notaries for important documents. Critical decisions about health, finances and death planning were left to caretakers and service providers, leaving the dying individual with little control over final decisions.

Death Needs a Reset

Being able to choose the location, activities and company of one’s last days was a recurrent theme. Despite being just days from passing, people expressed interest in writing articles, visiting museums, doing last trips with family members and exploring culture. My organization was able to arrange a robot tour of the Whitney Museum for one woman, who drove a telepresence robot around the museum from her hospice bed in Connecticut. At the end of the day, she drove the robot to the window and silently watched the sun setting over the river.