Rocky Roads: Delivering Hospice to Rural Communities

All right, imagine we’re meeting for the first time. You’re at home, and so am I.

We’ve arrived at this moment, though we’re in different places, because we’re meeting through a screen. A computer screen. A frame.

You’ve had a tough life, and you love your children and your old black Lab.

Miles away from town, you may live off the grid in a house you built with your own hands, or in a trailer on the back of your parents’ property. Maybe you live in your car, on a friend’s couch, or at the rescue mission.

Imagine for a moment that your journey to this place had nothing to do with attachment parenting, prenatal care, or the kind of privilege that mine did.

Imagine that you can’t even picture the upper reaches of Maslow’s hierarchy from way down at the bottom.

You’re sick, and you’re getting sicker.

Hello. My name is Michael. Michael Fratkin. Dr. Fratkin.

I’m a father, a husband, a brother, and a friend. And I’m also what’s called a palliative care doctor.

Now, what does that mean?

Well, it means that we don’t take care of patients. We bring care to people.

It also means that I’m part of a team of nurses, social workers, chaplains, community health workers, and care coordinators.

It means that we will never see you as anything other than the person you are.

It turns out that I’m also a person. The only thing distinguishing you from your care team, from us, is our current place on a timeline.

Right now, you’re in a place where you need to receive care, and we’re in a place where we need to give care.

Someday, I know I’ll need care too.

To get us started, I have a few questions.

Who are you?

What do you think is happening to you?

What matters most to you, now and going forward?

These questions are my offer to enter a relationship. A frame. A stake in the ground.

The questions are my invitation for us to connect and trust.

If you join me, a person and a doctor with a life, I can begin to understand how you’re navigating the life you’re living.

Several years ago, I had a crisis.

I was angry and confused, and angry as hell. I was just about wrecked.

The very sick people I had been caring for were teaching me what they wanted and what they needed, while the dusty, uninspired structures of the transactional 20th-century healthcare delivery system were crushing their hope and mine every day.

Under the pressures of numbers and clicks, and the expectation that while the system was locked down, my hours, my time, and my care were somehow limitless, I felt lost.

I couldn’t find a way to help sick people achieve the best possible lives they defined for themselves.

And I definitely couldn’t find that for myself, my family, or my colleagues.

All of us were suffering within a system that values transactions over relationships.

Like the work itself, the only way to manage this work is to manage it together.

Up in Northern California’s rural counties, the people who depend on the safety net are dispersed across a huge and rugged landscape.

They travel for hours in broken cars driven by family members who take precious time off work just to see me, all in the hope of achieving a better quality of life.

Well, that just seemed dumb.

Then I noticed the supercomputer Steve Jobs had put in my pocket.

I’ve never particularly loved technology, but I’ve always loved the people I get to care for.

I couldn’t keep asking people to come to me. And I couldn’t keep ripping through oil pans and tires on back roads all day long.

So I figured I would try connecting with them using the amazing tools at my fingertips.

I am, after all, a tool-using primate.

That’s it. That’s the genesis of ResolutionCare Network.

One burned-out rural palliative care physician. A ton of unmet need. And the simple idea that consumer technology and economics favoring relationships over transactions might be useful together.

Despite how miserable I felt, the timing turned out to be pretty good.

The Institute of Medicine had just released its second Dying in America report. And I have to tell you, in 17 years, things really hadn’t gotten much better.

Atul Gawande’s Being Mortal rocketed to the top of the bestseller list and was selling like hotcakes, even off the shelves at Walmart.

The California State Legislature stepped up with SB 1004, a mandate for palliative care for all Medicaid recipients.

And the California Health Care Foundation continued breaking trail by convening payers and providers to build partnerships that created access to palliative care in hospitals, clinics, and homes.

On the day we launched our crowdfunding campaign to build ResolutionCare, a young woman with brain cancer, Brittany Maynard, dug in.

She used the last few months of her life to advocate for her ideas about what death with dignity meant.

Brittany completed her life on the day we launched our crowdfunding campaign.

Using telemedicine is pragmatic. It’s simply the best way to build relationships with the people we need to reach, as often as we need to reach one another.

These days, our team connects directly with people for an average of about six hours a month. Nearly 50 percent of that engagement happens through video conferencing, face to face, person to person, in real time.

We estimate that we’ve saved more than 60,000 miles of driving this year.

Now, here’s a secret.

Telemedicine is better than real life.

Imagine again how sick you are. Imagine how far away everything is. Imagine how difficult everything feels.

And imagine how you feel when they stuff you into the role of “patient” at a clinic.

It’s imposing and depersonalizing.

Even if the magazines weren’t 10 years old, the plants weren’t wilted, and the staff wasn’t stressed beyond belief, it would still be wickedly intimidating.

Even if the other people waiting beside you weren’t frighteningly sick and coughing.

And imagine how you feel when some privileged healthcare professional comes knocking on your door.

Even if you aren’t embarrassed about the condition of your home, the smell, or the chaos, it’s still a home invasion.

Northern California is enriched by diverse cultures, many of whom agree on one thing: anybody coming down the driveway whom they don’t already know is probably someone they don’t want to meet.

The best possible care, defined by guidelines and randomized controlled clinical trials, can sometimes seem a million miles away from the people we work with.

A 40-year-old, brokenhearted single mother of three, addicted, homeless, mentally ill, living with cancer pain during the final months of her life, needs to be seen and heard before trust can lead to any medical progress.

That’s relationship, not transactions or compliance.

Doctors are people too. So are nurses and all the other people who form a team to bring care.

People brave enough to do this work, and fragile, like me, under the strain of a system they depend on.

Like sick people, clinicians walk into hospitals and get stuffed into institutional roles imposed on them too.

We are, after all, social primates.

We accomplish so much more by working together to create social structures that serve our goals instead of frustrating them.

At ResolutionCare, we empower our coworkers to work wherever they want, as long as we’re meeting the goals of the people under our care.

Our team is free to respond to every unique unmet need.

I’m wondering, do you all have any unique needs of your own?

Flexible hours and a focus on outcomes rather than time clocks give the team freedom for self-determination and creativity.

They get to work where they want and how they want while still being part of something bigger than themselves.

Imagine that.

What we’re doing isn’t technologically complicated or medically sophisticated, but it requires a whole lot of blue sky.

Blue sky is simply what’s happening outside the box, unconstrained by years of committee work, layers of turf battles, and politics.

Imagine that instead of building organizations from the whiteboards and boardrooms down, we build the future from the bedside up.

It means spending a few dollars to put a satellite dish on a home in the mountains, supporting a woman as she cares for her husband on the land where he has lived his entire life, and where his people have lived for centuries.

Respect for the agency and worth of all people has been embedded in the definition of good care and, in fact, embedded in the currently strained fabric of this American experiment.

The challenge in creating the future American healthcare experience is to create value for everyone, with improved well-being, dramatically better satisfaction, less waste, and sustainable work for those of us who care enough to bring care.

Imagine that future.

A couple of years ago, I was called to do a consultation at the hospital.

A 70-year-old Native man, an elder, was failing to recover from pneumonia.

His 90-year-old mother, Grandmother Aggie Pilgrim, sat upright at his bedside in tribal regalia.

I knew of her, and it made me nervous because Aggie had led the International Council of Thirteen Indigenous Grandmothers in a global effort to spread wisdom.

There were at least a dozen people in the room, representing five generations. On the bedside table, a laptop delivered another dozen family members from across the country.

And this pioneer of telemedicine for palliative care had nothing to do with setting it up.

The family laid out a clear path forward that would allow this man to complete his life peacefully.

I asked Grandmother Aggie to lead us in prayer.

She lit some sage, and I tried not to worry about the smoke alarm.

She spoke about her son, and about water, and about time. About how long a life is and how short a life is.

She connected all of his relations, across every distance, together in time, with love, respect, and all the room needed for grief and healing.

Imagine that we’re building a world that weaves that kind of wisdom into the healthcare delivery machinery.

Imagine that the best of our inventions are made useful to people through relationships that can guide them as they find their way toward the completion of their lives.

Imagine that when you’re sick, when we’re sick, the society we’re creating is clever enough to engineer and sustain a world worth living in and dying from.

Thank you.