How Storytelling Can Influence End-of-Life Policies

Back to the future.

Imagine it’s 1972. Republican incumbent Richard Nixon is about to defeat Democratic Senator George McGovern in a landslide for the presidency, following the lowest voter turnout since 1948, just 55 percent.

That year, the last human crew landed on the moon.

And the band KISS was formed.

Hell yeah. KISS is still relevant.

But also that year, in August, a Swiss-born physician testified at the first national hearing on the subject of death before the United States Senate Special Committee on Aging.

Elisabeth Kübler-Ross.

She spoke of death with dignity and an evolving sense of hope for the dying. A state of mind that begins with hope for a cure and ends with hope for the living, hope for their children and hope for their loved ones.

She also spoke of a peculiar death-denying society.

“To isolate both the dying and the old serves a purpose in society,” she said. “They are reminders of our own mortality.”

Our own mortality.

Well, we’ve heard a lot about our own mortality today. But what really happened in that hearing room in the United States Senate? What really happened that day in 1972?

Well, I actually don’t know from experience. I was negative one years old, and clearly upset that I wasn’t there.

But what happened at that hearing, before a Senate committee with no legislative authority, a committee that could not consider or pass bills, was innovation.

What happened was hard work. The really hard work of stretching, thinking and considering that death could be something else.

The status quo was questioned that day. A political curiosity and a will to change our system of care in America were born.

For us as a nation, that hearing asked: How could end-of-life care be improved through policy and politics?

That was a crucial moment. A committee with no legislative authority fostered a sea change in this country.

Fast-forward to 1982. After a series of Medicare demonstrations designed to test the concept, hospice became an enshrined benefit for anyone over the age of 65 with six months or less to live.

Fast-forward to today, 41 years later, and that benefit remains largely unchanged.

That’s good for hospice programs in this country that rely on a daily payment from Medicare. We call it a per diem.

But is it good for people?

Is it good for families in this rapidly changing healthcare environment?

Is it good for all of us as humans in America, even those humans in Congress?

Yes, they’re humans too.

The spirit of that Medicare benefit, passed by Congress more than 40 years ago, remains relevant today. From my perspective, it’s crucial.

It’s community-based. It allows people to receive care in their homes. It relies on an interdisciplinary team, with support from volunteers, everyday people with extraordinary empathy and a desire to give. Many of you are in this room today.

And it includes a robust bereavement program, especially among our nonprofit programs across the country.

Dr. Kübler-Ross sparked a movement that day, in American hospitals and homes, and also in Washington, D.C., where I live and work.

My wife lives and works there too. She’s out here somewhere.

So I offer a simple question:

Can we do that again today?

Can we create a spark?

Despite what you read in the news, Congress is still open for business.

Barely.

And certainly behind the scenes, in the committees with jurisdiction over healthcare, even committees with no legislative authority can spark a movement.

Yet the problems remain clear. We’ve heard some of the statistics throughout the day.

About 10 percent of the Medicare population accounts for more than 57 percent of its costs.

Studies show that about 42 percent of people in this country have had any conversation about end-of-life issues.

Only about 23 percent have put their care directives into writing or legal documentation.

Almost half of doctors report that they’re unsure what to say during an end-of-life conversation, and fewer than a third report receiving any formal training.

When asked where they want to die, about 70 percent of Americans say they want to die at home.

About 70 percent do not die at home.

Many researchers are now even asking whether home is the right place to die for people with medically complex conditions.

It’s a controversial but important question.

All too often, people’s goals, values and wishes are not reflected in the care they receive.

And perhaps most importantly, are palliative care and hospice enough?

Aren’t we all pre-terminal?

Shouldn’t we receive that care sooner?

We also know that the healthcare system, and the many community-based interventions around it, are evolving.

Healthcare represents a full fifth of our GDP in America.

Health plans are looking more like providers every day. Providers are looking more like health plans.

Payment and reimbursement in America are now based more than ever on value rather than volume.

Nonprofit entities are being challenged by the growing interests of for-profit competitors and their venture-backed partners.

Consolidation abounds.

And nonmedical services are becoming widely recognized as crucial to achieving better health and stronger communities.

The healthcare system and our communities are evolving around end-of-life care.

So, have hospice and palliative care been left behind?

I say no.

Especially if we, you and me, nurture some spark.

Any spark.

And I think we’ve seen sparks today.

Sparks of design.

Sparks of personal stories. Powerful personal stories. Wow.

Sparks of innovative approaches.

Sparks of love and compassion.

And yes, human sparks that unite us in empathy, courage and the desire to make all of this better.

I think we need a spark of reform in Washington, D.C.

We need to ensure a continuum of care in America.

And what do I mean by that?

With 10,000 baby boomers turning 65 every day in America, the time is now to rethink how care for the dying is delivered and paid for.

We’re still talking about this.

There is no interest, industry or force at play in American healthcare and its markets that is exempt from the downstream, largely immeasurable effects of decisions made in Washington, D.C.

None.

As Tip O’Neill famously said, all politics is local.

Remember that one?

But the largest forces in healthcare policy and politics are federal and state. In that sense, we need federal and state solutions to improve end-of-life care in America.

We need a system of community care that is seamless for the patient and the family.

Actually, not the patient.

The person.

The person, the family and the caregivers.

A system that begins well before the end of life and relies on our patchwork, but, I would argue, powerful public-private partnerships in the United States.

That will mean big changes in Washington.

Big sparks.

So, what’s the secret sauce?

What is the most powerful force we have to ensure that leaders understand what high-quality end-of-life care can truly be, and to build and sustain this seamless approach?

Personal stories.

This is my mom.

Don’t those popovers look so good?

Her specialty.

She has been a hospice and palliative care advocate, volunteer and leader in our community in Vermont since 1975, after reading Dr. Kübler-Ross’s On Death and Dying.

I wonder whether she saw that hearing in 1972.

She’s watching right now. I’m sure I’ll get a text before I finish telling me whether she watched it or read about it.

But she inspired me to do this work.

She’s my personal story.

Here she is with Elisabeth Kübler-Ross. She’s there in the back.

When Elisabeth was in hospice, it was the great honor of my mother’s career to be part of her care team, really as a friend, as Elisabeth neared the end of her life.

Yeah, she’s pretty amazing.

And this is President Biden and his late son, Beau.

President Biden is not only the commander in chief.

President Biden is the empath in chief.

Politicians have stories too.

Human stories that can spark policy and transcend politics to ensure higher-quality end-of-life care in America.

And he’s not alone.

Senator Warner. Senator Capito. Senator Barrasso. Members of Congress. Republicans. Cabinet secretaries. West Wing staff.

They all have stories.

And those stories unite us in empathy. They create a more powerful opportunity to tell our stories as humans.

So imagine that one day you find yourself in a powerless committee room.

Your story, your voice, could be the very spark that ignites a movement and transforms how we care for one another at the end of life.

Remember, it’s not only about changing policies.

It’s about changing hearts.

And that starts with a story.

Thank you.