When the System Doesn't Serve the Dying and How to Change That

My dad loved life, and he hated being sick.

The months between my dad’s diagnosis and his death sucked.

But here’s the thing: they didn’t only suck.

During that difficult time, Dad and I had some precious interactions and important conversations.

Dad and I did not have a perfect relationship. Um, he was a proud, patriotic World War II veteran. And in the early 1970s, at least, I was a proud, idealistic, draft-dodging, anti-war, protesting hippie.

Dad hated my politics. He hated the way I looked, the length of my hair, the music I listened to, and my psychedelic explorations.

The months before his death gave us a chance to say things to one another that might otherwise have gone unsaid.

There were the “please forgive me’s,” the “I forgive you’s,” the “thank you’s,” and the “I love you’s.”

Expressing gratitude, forgiveness, and love seemed both necessary and natural.

We also had time to share stories the other hadn’t heard. I heard stories from his early years and about my parents’ lives before my sister and I came along.

We laughed together. We were sad together.

Though he felt physically lousy a lot of the time, Dad never lost his capacity for joy.

When my first daughter, Leela, was born, Dad was over the moon. In fact, being with Leela, even briefly, evoked joy every time.

These early experiences shaped my practice as a young physician and, frankly, my career.

I learned that at critical moments of life, time is measured in depth as much as in length.

When I met a seriously ill person, in addition to asking about pain and bowels, I made sure to take a moment, get quiet, lean forward, and ask, “And how are you within yourself?”

This felt like real doctoring.

I was drawn to the early hospice movement, which had sprouted in the optimistic generational soil of the 1970s and ’80s.

My generation was going to change the world, end war, hunger, and poverty, and extend healthcare to all.

Many of us were appalled to witness dying patients receiving bad care, and we committed ourselves to doing something about it.

Hospice upended mainstream medicine’s denial of death and its “treat till they die” mentality simply by being honest about dying and combining good medical care with meticulous attention to people’s personal priorities and those of their families.

We showed that much better care was possible.

This was a clinical revelation, but also a social and cultural one. In a sense, we were stretching the wellness movement through the end of life.

Abraham Maslow’s hierarchy of needs provided a rough scaffolding.

Human caring begins with making sure people have, you know, a roof over their head and a clean, dry bed.

It extends to competently diagnosing and managing each of their medical conditions, including the sources of their pain and suffering, and doing so in a way that aligns with their personal values, preferences, and priorities.

We can extend help to people who choose to complete their personal affairs.

Some people devote their limited time and energy to taking bucket-list trips or visiting loved ones. Some invest in mending and tending relationships, enjoying those relationships, sharing stories, reminiscing, and giving gifts.

For some people treated in this manner, it turns out that dying can become a culmination of life, not merely its ending.

Being with my dad and others taught me that, yes, well-being is possible even at the far edge of life.

And it seems to turn mostly on being able to love, feeling loved, and at least occasionally experiencing joy.

The full continuum of human caring extends to honoring and celebrating people who are ill or who have died.

That’s why we hold vigils, throw going-away parties, convene celebrations of life, hold funerals and memorials, attend wakes, and sit shiva.

These are rituals that help care for the whole person, their family, and ourselves.

This full continuum of human caring feels culturally monumental.

But wait, there’s more.

Hospice and palliative medicine research has clearly shown that consistently excellent care is practical, affordable, and scalable.

So why haven’t we done it?

Why haven’t we revolutionized the way Americans are routinely cared for and experience the last stages of life?

Sadly, the answer turns largely on greed and failures of leadership.

Greed is now pervasive within American business and corporate culture.

Healthcare executives and insurance executives may give lip service to human values, but they seem to squeeze every dollar they can out of healthcare transactions, stuffing their own pockets with wealth at their clients’ expense.

Hospice has tragically fallen victim to this trend.

A well-run hospice program can return annual profit margins of five to eight percent. But publicly traded and private equity-owned hospice corporations routinely post margins of 15 to 20 percent.

They do so, at least partly, by short-staffing doctors and nurses, tolerating higher caseloads, making fewer visits, allowing longer response times in emergencies, and leaving unmet needs among the people they’re supposed to serve.

Let’s be clear.

These are moral failures on the part of corporate leaders.

A terminally ill patient whose pain is undertreated and whose basic needs are unmet is robbed of comfort and the ability to do what matters most to them personally.

This social injustice must end.

A new cultural awakening and corresponding social movement are needed to safeguard people’s full human potential.

It is up to you and me to raise people’s expectations for reliably excellent care, and their awareness of the potential richness of these inherently difficult, unwanted times of life.

Dying people shouldn’t be left to figure things out on their own. That’s tantamount to abandonment.

They deserve doctors, social workers, patient advocates, navigators, and doulas who serve them, not some faceless corporation.

Patients and families need resources to identify the best hospitals and hospice programs, and help avoiding those that are bad or merely mediocre.

They need to know what to ask for and, when necessary, how to demand much better care.

Simply put, as a national community made up of mortal beings, and as a culture, it is time to grow the rest of the way up.

Many of you are already engaged in this important work of cultural evolution.

End Well today will showcase amazing, innovative efforts.

Through advocacy, and by infusing stories and images of people facing life’s end into the fabric of contemporary life, we are stretching our collective notions of full and healthy living.

I think of the doulas. Thank God for the doulas and the cultural leadership they are showing.

I thank the spiritual leaders who have the courage to integrate illness, caregiving, and dying into the life of faith communities.

Thank you to the psychedelic-assisted therapists and researchers, the green burial entrepreneurs, and the people convening Death Over Dinner gatherings and death cafés.

I thank the artists, actors, authors, musicians, poets, and stand-up comics who viscerally engage us in the varieties and depths of end-of-life experiences.

You are prime drivers of cultural transformation.

You know, back in 1978, when my career was just beginning, Dr. Elisabeth Kübler-Ross wrote:

“Children who have been exposed to these kinds of experiences in a safe, secure, and loving environment will then raise another generation of children who will most likely not even comprehend that we had to write books on death and dying and had to start special institutions for dying patients. They will not understand why there was this overwhelming fear of death that for so long covered over the fear of living.”

The young, idealistic physician still living within me believes that, together, we can realize this bright vision of a healthy human community.