Getting There from Here

As I think about where we are today, where we’ve been and where we’re going, I’m guided by a North Star: helping people with serious illness, and the people who care for them, live well and end well.

For me, palliative care is an important part of that journey. It is an extra layer of support that reduces suffering and improves quality of life for both the patient and the family.

When I look back at where we’ve been, I find it remarkable that just 30 years ago, the field of palliative care did not exist. It was built through private-sector philanthropy and committed clinical leadership.

The Cambia Health Foundation has focused on palliative care as our signature investment program since the very beginning. At first, we concentrated on building the palliative care workforce and providing seed funding to local hospitals so they could develop palliative care programs.

Our theory was: If we build it, they will come.

But let me take you back to an “aha” moment that changed our theory.

It was the 2008 presidential campaign, and Obamacare was at the center of the political debate. One provision in the proposed legislation would have allowed doctors to bill Medicare for advance care planning conversations.

Overnight, the political rhetoric went into overdrive. There were ominous warnings about government death panels, healthcare rationing and even killing Grandma.

It was ridiculous. Complete and utter nonsense.

Yet it taught us something. It taught us that words matter. They matter a lot.

Systemic change alone is not enough to change care. We realized that we also needed to change the culture. We needed to incite a social movement.

Think about the way childbirth changed in this country during the 1970s. The medical system did not decide that it needed to change. Committed people like you and me said, “We want a different path.”

We are doing the same thing here.

It starts with listening.

After the death panel debates, the Cambia Health Foundation conducted a national survey. We found that 71 percent of Americans did not know what palliative care was. Yet once the term was explained to them, 97 percent believed it should be a priority for the healthcare system. They wanted palliative care to be available alongside their curative treatment options.

That was when we realized that a lack of understanding was a serious barrier to quality care.

Even if we built it, they might not come.

The path is not always straight when you are trying to change a culture. We learned from our original approach, and we pivoted.

We now know that social movements operate on two levels: changing how people think about something and changing what they can do about it.

Words and action, together.

“Together” is a key word for the Cambia Health Foundation. Over the years, we have built a web of relationships with fellow travelers. Many of you are in this room today.

Let me pause and say thank you. Thank you for your commitment, your passion and your partnership.

Together, we have created real change.

Three-quarters of hospitals in the United States now have palliative care programs. There are 149 fellowship programs for palliative care clinicians. Medicare now covers advance care planning conversations. And there are 62 Sojourns Scholars leading the way toward a healthcare system that is more compassionate, holistic and healing.

That is a lot of change in 30 years, and all of it gives me great hope.

That is good, because we still have more to do.

Although we have accomplished a great deal, more must be done to help people live well and end well.

We still need to do three things.

First, we need to expand access beyond hospitals and into communities and homes.

Second, we need to better support family caregivers. We need to recognize and honor them for the heroic work they do.

Third, we need to get our messaging right. All of us need to speak with one voice.

People are still confused about what palliative care is. They equate it with hospice. As a result, they decline services and suffer without that extra layer of support.

Together, we need to change the narrative so that everyone who could benefit from palliative care knows what it is and how to access it.

Words and action, together.

None of us can do this alone. But when we team up, amazing things happen.

They have. They are. And they will.

Thank you.