Everyone Has Their Story

I work in politics. I live and breathe politics. And, frankly, politics can really, really suck.

Perhaps this is obvious. On a daily, hourly and minute-by-minute basis, we are deluged with negative news about politics. Healthcare is no exception. In fact, this may be even more pronounced in healthcare because healthcare is politics that is literally on our bodies. It is government on us, close to us, near us and, in some cases, inside us.

This creates immense political and personal challenges.

So why the hell do I work in politics?

For one simple reason. Contrary to what we have come to believe, politics is perhaps the best vehicle for improving people’s lives and their care. This is especially true for people living with serious, advanced illness and facing the end of life.

Take Linda. Linda is a working mom whose son is not yet out of high school. She is caring for both of her parents, who have Alzheimer’s and less than a year to live.

Take Phil. Phil is a physician who practiced for more than 30 years in Johnson City, Tennessee. Still, he could not have imagined how difficult it would be to have that conversation with his terminally ill wife while sitting at her bedside and holding her hand.

Take Johnny. Johnny is the son of a mother and father with two terrible diseases, a mother with cancer and a father with Alzheimer’s. Johnny saw the importance of considering your own care options while you are of sound body and mind, as he did with his parents.

Finally, take Ted, or Teddy, as many of us knew him. Teddy lived and worked after being diagnosed with terminal brain cancer, wanting to leave his mark on the people he had dedicated his entire life to serving. His mantra while working and dying was, “Aren’t I lucky?”

What do these individuals have in common? Why are their stories unique, yet also common to us all?

Linda, Phil, Johnny and Teddy were all members of the United States Congress, either the House of Representatives or the Senate.

It is true. Politicians are human too. I know it is hard to believe.

Politicians, regardless of their political allegiances or the legislative bodies in which they serve, have personal end-of-life stories that cut through the toxicity and challenges we face as a country. I have found that these stories can become some of the most powerful forces in the halls of Congress, changing the lives of millions of Americans.

I have a story too. This issue is deeply personal to me.

This is my mom. I took this photo from Facebook yesterday without permission, so this is not being filmed, right?

My mom has cared for hundreds of people in hospice over the past 35 years. She is the heart side of my brain.

My dad was a physician, a pathologist and a scientist. He is the technical side of my brain.

This led to some very interesting dinner conversations while I was growing up. I call them conversations now. At the time, they were arguments about death.

My mom taught me to see a dying patient as a person, rather than simply as a patient. Seeing the person honors their dignity and quality of life, beyond their medical care.

My dad taught me how much could be done, the miracles of modern medicine and how far medicine could extend life.

It was my parents, right-handed and left-handed, science and spirituality, life and death, who led me to palliative and hospice care. They led me to the idea of alleviating suffering through healthcare and human care, and to the belief that if we redesign our healthcare system and its built-in incentives, we can fulfill the promise of palliative and hospice care.

Care could always respond to a person’s goals, values and wishes, for everyone, rather than only for people who are dying.

Unfortunately, in America, we do not receive the best end-of-life care possible.

I call this the big gap. On one side is what people want. On the other is what they typically receive.

We want coordinated care, with the home as the primary setting. Yet we are too often recycled in and out of the hospital. Study after study shows that our healthcare system still prioritizes the volume of care over its value.

Don’t we all want our healthcare professionals to communicate with one another, especially when we are seriously ill?

We want our pain managed and to receive comfort care. Yet many dying people receive unwanted and ineffective treatments.

One study found that 89 percent of people believed their healthcare providers should talk to them about end-of-life care, but only 17 percent of those conversations actually happened. Ninety percent of physicians had never brought it up. Nothing against the physicians in this room, but 90 percent.

People want to be at home with their families and the people they love. Yet we typically die in hospitals, sometimes in pain and isolation.

Studies conducted here in California asked people where they wanted to die. Seventy percent said they wanted to die at home, but 68 percent did not.

This is the big gap.

Finally, people who are seriously ill do not want to become a burden on the people they love. This is a shocking idea to me, but study after study shows that it is the number one issue people think about when they are dying.

Yet high medical costs at the end of life can impoverish families and cost our country hundreds of billions of dollars in unnecessary spending.

This is the gap we must close.

The Dartmouth Atlas also teaches us that there are geographic disparities in the United States, that there are better and worse places to die in this country.

Why is it that 71 percent of people in Ogden, Utah, die while receiving hospice care, while only 31 percent do in Manhattan? That is a full 40-point difference.

Why are intensive care unit deaths in Cedar Rapids, Iowa, almost four times those in Los Angeles?

Again, we must close these gaps to honor people’s dignity and ensure that they receive the best possible care.

Policy and politics offer solutions.

Over the past several years, dozens of bills have been introduced in Congress to improve the lives of people with advanced illnesses and those facing the end of life, more than ever before. It is my great privilege to work with many people in this room and across the country on this legislation.

Some of these bills have progressed and become law.

Yes, we are making progress. Yes, there is hope.

For example, Medicare now places value on advance care planning by paying physicians and other health professionals for conversations about end-of-life wishes. Advocates fought for decades for this simple policy solution to a politically charged issue.

One would think the “death panels” were finally dead.

Bipartisan legislation has also been introduced to establish new models of care similar to hospice, but available earlier for people with advanced illnesses.

Imagine receiving supportive palliative care from an interdisciplinary team in your home months, or even years, before hospice.

Payers in commercial and Medicare Advantage markets are experimenting with and investing in this kind of care. Medicare itself should be next.

The Medicare Care Choices Model, which was mentioned earlier, shows promise by allowing curative and comfort-focused care to be offered at the same time. But the model only applies to people who are already eligible for hospice.

We must move upstream from hospice. Hospice is the original person-centered care model.

Bipartisan legislation has also been introduced to train our workforce in palliative care. We need more palliative care soldiers in this country.

Let’s invest in our workforce to ensure that all health professionals, beyond those who specialize in hospice and palliative care, receive basic training in end-of-life care. Shouldn’t that be the norm?

Finally, bipartisan legislation passed the Senate unanimously just a few weeks ago that would support and pay for better care coordination for people with multiple chronic conditions. The legislation included a seminal study examining longitudinal care planning for people approaching the end of life.

This is only a sample of the bipartisan progress we have made as a country.

Yes, we are making progress. Yes, there is hope.

Now, politics.

Yes, politics can suck. But in this case, politics can be both a solution and an inspiration.

You have heard the phrase, “All politics is local.” In healthcare, all politics is personal.

How do we navigate the complicated politics of advanced illness and end-of-life care?

We use personal stories as our guiding beacon.

Just one year ago, the Senate Special Committee on Aging held a bipartisan hearing led by Senator Sheldon Whitehouse, a Democrat from Rhode Island, and Senator Susan Collins, a Republican from Maine.

A guy by the name of Dr. Atul Gawande, perhaps you have heard of him, was the lead witness.

The hearing was about end-of-life policy. But within moments, it became clear that the hearing was not really about policy. It was about stories.

There was not a dry eye in that committee room, including among members of Congress and including me. I am a crier. I even think I saw Atul get a little misty.

Yes, even in congressional committees, we have the opportunity to humanize the issue of end-of-life care.

Many members who support this legislation do so for personal reasons, because of Teddy’s story, my story, your stories and our stories.

But politics is more complicated than that.

If personal stories are our guide, our green light across the bay and our key to unlocking the conversation, then managing the political process is our strategy. Process is the roadmap to success.

We have many tools in our tool belts.

Lawmakers feel all kinds of pressure and have many reasons for wanting to create change, from constituent outcry and major donors to their own political aspirations and the desire to put points on the board.

Lawmakers have problems that need to be addressed, and better end-of-life care can offer solutions.

One of those problems is fiscal. It was mentioned earlier: the high and unsustainable costs of the Medicare program, largely attributed to too many expensive tests and a growing baby boomer population.

We know the Medicare trust fund is projected to become insolvent. We know that approximately 5 percent of Medicare beneficiaries account for almost 40 percent of Medicare spending, many of them near the end of life. We also know that Medicare spending during the final year of life has doubled over the past 15 years.

Addressing costs at the end of life is the unspoken, quietly whispered issue in end-of-life care.

Politically, those costs are the third rail.

Lowering costs must mean rationing, right? It must mean the government is taking something away.

No.

It makes no difference to me, Congress or Medicare what treatment you choose, or whether you choose treatment at all. You do you.

When care is provided according to a person’s goals, values and wishes, when it takes conversations into account, supports the family, is provided at home and avoids unnecessary crisis care in the hospital, guess what? It saves money.

More often than not, when care is provided at home or in another appropriate setting, costs are lower.

That is the care my mom wants. I think it may be the care my dad wants too. We are still talking about that.

Maybe, just maybe, high-quality care for advanced illness and the end of life can help sustain cherished public programs such as Medicare, both now and for generations to come.

Serious challenges still remain.

When people were asked whether the Affordable Care Act allows a government panel to make decisions about end-of-life care for Medicare beneficiaries, 60 percent answered yes or said they did not know.

Indeed, the idea of death panels is still alive.

This is our challenge, and this is where you come in.

Your stories will be the engine that drives politics toward better care for advanced illness and the end of life. Your stories can kill the myth of death panels and normalize these conversations in politics and far beyond.

Your stories will break the logjam and neutralize the toxicity.

Keep talking. Keep sharing. Keep telling your stories.

Because if you do, if we do, we will have better end-of-life care in this country.

And politics might just suck a whole lot less.

Thank you.