One Man's Quest to Make Mourning Joyful

Hi, End Well. I love this conference because there is no small talk. My heaven.

I’m going to tell you a little bit about me. I was born an hour and a half north of here to commercial citrus and avocado growers. My dad was a doctor at our local hospital, and my mom ran the ranch. They also rescued donkeys.

Anytime my dad was at the hospital, we were outside running irrigation lines, spreading fertilizer, and digging in the dirt. It was a magnificent childhood. It was beautiful, strange, and privileged. You really could say that I had absolutely nothing to worry about.

Until I did.

When I was three and my dad was 42, he was diagnosed with metastatic osteosarcoma, an aggressive bone cancer. It was the early 1980s. He was given a six-month prognosis and told to say goodbye to us.

Instead, he pursued early chemotherapy, radiation, and a leg amputation at the Mayo Clinic. Miraculously, he didn’t die. First, he lived one year. Then two. Then three.

But he had recurrences the whole time. We lived between scans. We lived as though there were an executioner’s axe hanging over our dinner table, and we didn’t know when it would fall.

His scans would often reveal something new: a neck tumor here, a leg tumor there, another tumor in his knee. Then he would go in for more treatment. It was like a sinister version of The Giving Tree, only he was trading body parts for time with us.

When I was 11, the cancer came back, and he knew it was for good. That was when he decided he was going to train my brother and me for a time without him.

While other kids were riding their bikes after school or having playdates, my brother and I were in my dad’s version of survival school. It was very specific to the things he thought we would need to survive without him.

Understanding the Dewey Decimal System has not helped me at all. Memorizing the member nations of the United Nations has helped me a little more. He taught us about the role of nitrogen in soil health, how to scratch a man’s eyes out if I was ever attacked, how to beat a man at pool, which I’m still working on, and how to fix a carburetor.

There were so many of these lessons.

He also did a number of things to remain present for us after he was gone, because he knew that would happen sooner rather than later. He planted trees around the ranch because he knew they would feed and shade us after he died.

Even though I was only 11, he bought a flock of doves, built them a little coop, and put my brother in charge of them. He said, “You have to take care of these until your sister gets married one day, hopefully a long time from now.”

He also became a beekeeper. He knew honey didn’t spoil. He knew the ancient Egyptians had used it as a natural antibiotic. He put away honey so that we would be able to stir it into our tea, even to this day.

Throughout it all, I knew he was suffering. I knew he was often in terrible pain, but he would not talk about it. He wouldn’t let us see him in the hospital. During the many years he was sick, I never saw him as a quote-unquote patient, although I saw him suffer all the time.

If any of us, or any friend or member of our community, expressed anything resembling empathy, he would become angry. For him, empathy and pity were the same thing.

Watching that from the beginning of my childhood through adolescence, I started to learn that being strong meant being invulnerable. It meant hiding whatever pain or suffering I felt because showing it would be a betrayal of him.

Here was this person sacrificing everything just to remain around long enough to teach me how to change a hose bib.

Our family line was, “You are privileged. You are blessed.” That was 100 percent true. But the second part was, “You had better work very damn hard to take advantage of the advantages you have been given.”

So I did.

I took all my fears and anxieties and threw them into schoolwork, after-school activities, and anything that would keep me from feeling my own worry or concern.

My dad said he would stay alive for as long as he could enjoy his life with my mom, my brother, and me. Then, when he couldn’t, he would die.

I took this entirely at face value until one day when I was 16. By then, he had lived for 13 years with metastatic bone cancer.

I was painting my nails with some friends and went into my parents’ bathroom cabinet looking for nail polish remover. I found an unmarked pill bottle with a handwritten note wrapped around it containing dosage instructions.

I immediately knew that my dad had a terminal prescription. This was it. He had a plan. There was a level of suffering he was unwilling to endure. That was what he had meant when he had been saying this my entire life.

I wasn’t angry. I completely understood. I was scared, certainly, but I knew I wasn’t supposed to say anything. Saying something would have been another kind of betrayal.

So I said nothing. I put it back where I found it and tried to pretend I didn’t know.

Six months later, we were on the phone and got into a big fight. It was stupid. He wanted me to complete my college applications earlier than I wanted to, and I was mad.

I hung up on him. I didn’t say goodbye. I didn’t say, “I love you.” I just remember the ka-chunk of hanging up the phone as hard as I could.

I didn’t know it, but that day he was about to take his lethal medication. By the time I got home, he was unconscious. I would never hear his voice again.

I dealt with his death by chasing academic honors like a drug. I played Division I college sports until I stopped getting my period.

I threw myself at life and into life in a way that I’m not going to say I regret, but it was exhausting. I took his hopes and dreams for me and lived as though they were a to-do list rather than things I was supposed to enjoy.

I wrote a book. I earned my PhD. By my mid-thirties, I was absolutely exhausted.

I had spent my entire adult life trying to prove that I was good, because someone who is good is not someone who hangs up on her dying dad.

I was trying to use achievement, and all the nice things that come with it, like a drug. Like an anesthetic for all the difficult feelings I didn’t want to admit were there: shame, regret, and guilt.

I hate to say it, but you cannot kill shame, regret, and guilt with overwork and avoidance. Mine came back with a vengeance.

On the outside, I was successful and thriving. On the inside, I was questioning my worth. I was anxious and scared.

I didn’t want to keep living like this. I couldn’t keep living like this.

I decided I wanted to change. But how on earth do you do that?

I’m a writer and a researcher, so I set out to interview many of the grief specialists who are in this room. It was always hypothetical: “What would you do if…?”

But I started doing some of the work. I did everything they told me because my coping mechanism was still being a goodie two-shoes.

I even went into the wilderness with no food and no tent to do something that scared me: to be alone with my thoughts and feelings, including the ones I found most uncomfortable, with nothing to distract me from them.

I became very bored, very dirty, and very much in need of coffee.

I realized that what scared me most wasn’t even my most negative feelings. It was love.

Love is the gateway to negative feelings because you can lose it. I hate love. I hate caring about anyone or anything.

I knew that couldn’t stand. I wanted to live the kind of life my dad had actually wanted for me: a big, brave one. To do that, I was going to need to understand that courage looked different.

I heard about a grief-support organization for children and became a volunteer facilitator. It’s called Josie’s Place, and it’s in San Francisco. It’s a wonderful organization.

I immediately felt less alone because I walked in and saw that all these children thought they were bad too. So many had been out of the room playing when their mother died. Some had said something in anger to a parent that they regretted. They blamed themselves.

I could see, looking at them, that the terrible things that had happened were not their fault. Because I could see that, I began to understand that what had happened to me might not have been my fault either.

The children were doing something I think many of us do. It is easier to blame yourself, even though that is painful and uncomfortable, than to admit that bad things can happen for no reason at all.

The children taught me some of the most important lessons from what became a seven-year project and period of my life.

They taught me that the worst thing you can do when you’re sad is try not to be sad. That sounds basic, but I had spent years trying not to pay attention to sadness.

They also taught me that feeling guilty does not necessarily mean you did something wrong. Feeling regret does not necessarily mean you should have acted differently.

Here I was, learning all these things. But life is nothing if not a sushi conveyor belt of things that are going to test you and teach you at the same damn time.

First, I lost my dad. Then we lost our family home to a wildfire.

We didn’t just lose the house and a third of our trees. We lost everything my dad had worked so hard to prepare and save for us.

Two years after that, I lost my mom, also to cancer, but quickly this time. She chose the right to die too.

Because of the experience we had with my dad, we vowed that this time would be completely different. No one would be left wondering whether they had messed up, whether she knew how they really felt, or whether she understood how much she had meant to them.

We decided to hold a kind of goodbye, send-off, or living memorial for her, whatever you want to call it. We each took turns telling her how much she had meant to us and to our lives. We wished her a good journey and told her what we hoped for her.

It hurt like the dickens. It was also so beautiful.

If you can swing it, everyone deserves a chance to say goodbye and good luck.

I learned through this process that death is a doorway, not a destination.

No matter what you believe about the afterlife, as soon as you die, you immediately begin becoming something else, another form of life.

I saw this up close. A year after my mom died, we decided to spread her ashes over the lemon orchards she had planted 45 years earlier.

We used our friend’s crop duster, the same kind of plane we use to fertilize or spray the trees. We had to mix her with a 10-pound bag of Gold Medal flour because human remains are not visible enough from an airplane, which is a fact I never thought I would need to know.

Her ashes were spread over the trees and soil. They were pulled into the roots of the trees and incorporated into the lemons.

Because we eat those lemons, they became us too.

Actually, if you shop at Safeway, maybe they became you too. Don’t tell the USDA.

By spending so many years of my late teens and early adulthood trying to outrun or outwork my negative feelings, I missed a very important lesson.

You cannot have joy without pain. You cannot have bravery without fear. You cannot have resilience without challenges. You cannot have life without death.

These things are not opposites. They are partners.

It is never too late to remember that every heart is a phoenix, being born from the ashes of what we love again and again and again.

Thank you.

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I wasn’t there the night my mother died.

That is a sentence that has defined my life for 27 years, and it didn’t have to be this way.

The night my mother died, I was a college freshman attending a small liberal arts school in Vermont. My mom had been sick for five years. In fact, both of my parents got cancer at the same time when I was in the eighth grade.

My dad found out first. He had prostate cancer. Within months of his diagnosis, my mother learned that she had stage four colon cancer.

I’m an only child, and this experience rocked my whole little family. We tried not to talk about it much. We tried to pretend everything was going to be okay. I used a lot of distractions to keep up that ruse. My love of cute boys and creative writing were my go-to methods.

So there I was, chasing cute boys in my creative writing classes in college, when my father called one afternoon.

My mom had been in and out of the hospital ever since they dropped me off at my dorm room a few months earlier. My dad said they were trying some potentially lifesaving alternative treatments and that I should carry on with school for now.

But that afternoon, when he called me, there was something different in his voice. He sounded tired. Resigned.

“She’s not going to make it,” he said. “Kiddo, we talked about it, and we think you should stay at school for now.”

I remember the air thinning inside the little phone booth where I sat. I remember the sound of kids laughing in the common room nearby.

He continued, “You’re 18 now, kiddo. The choice is up to you.”

I hung up the phone, threw a few things in a bag, and set out to drive the seven hours to the hospital where my mother lay dying.

It was midwinter. I left in the late afternoon, and the roads were icy. Scared and stressed, I stopped halfway to see a friend who happened to be a cute boy.

My dad said, “Why don’t you stay the night and continue on in the morning?”

You can probably guess what happened next.

At 3:00 a.m., my father called me at the boy’s house. My mother was dead.

That moment, in that boy’s house at 3:00 in the morning, became a dividing line in my life. There was no going back to who I had been before.

Who I was becoming was someone who would carry a very complicated grief forward with me, a grief infused with guilt, pain, anger, and confusion about how my mother had reached the end of her life without any of us quite realizing it was coming.

My mother died in 1997. Since then, many studies have outlined the disparity between what Americans believe they want at the end of life and the care they actually receive.

We know that 80 percent of older patients living with incurable cancer wish to avoid hospitalization and high-intensity treatments at the end of life. We know that missed opportunities for end-of-life discussions are far too common.

A 2022 study in the Journal of the American Medical Association found that more than 41 percent of patients living with incurable cancer believed they had more than five years to live, while only 10 percent of their oncologists agreed with those estimates. Nearly 60 percent of patients with terminal cancer believed their cancer could go away and never return.

Based on a 2014 Stanford survey of doctors, we know that physicians are overwhelmingly likely to choose nonaggressive care at the end of their own lives. Up to one-third of oncologists would not accept the chemotherapy they prescribe to others. The same survey found that 80 percent of physicians would likely choose do-not-resuscitate orders for themselves.

These are all things we know. Most of you in this room know them. Thankfully, they have been discussed frequently over the past decade.

Here is what hasn’t been discussed enough: the disparity between what people want at the end of life and what they receive is resulting in prolonged and complicated grief for the families mourning those patients.

Families like mine.

After my mom died, I dropped out of school for a while. I even gave up writing for a time. Although I eventually returned to college, I came back with crippling anxiety and complicated grief.

We didn’t have as many of the amazing grief resources then that we have today. Whenever I talked about my struggles with my mother’s death, people told me I would be fine. I was an adult now. I should just carry on.

By the time I graduated from college, my father’s cancer had returned. While my friends were trying out new apartments, cities, careers, and relationships, I was driving my dad to radiation treatments, caring for him at home, and grappling with the realization that I might lose my only remaining parent.

My father’s treatment was brutal. Radiation to his hips left him unable to walk. Radiation to his mouth, where the cancer had spread, left him unable to eat.

Still, the doctors tried to usher us toward various alternative treatments. I encouraged my dad to listen to them. I wanted so badly to prolong his life.

After a while, my father said no. No more treatments.

He wanted to go home. He wanted to live the rest of his life with as much dignity and presence as possible, and he wanted me to help him do it.

I cared for him at home with the help of a hospice team. During the final weeks of his life, we were able to have the conversations we really needed to have. We were able to say goodbye.

My father died at 7:00 p.m. on a Tuesday evening in August, in his bedroom, six years after my mother. I was holding his hand.

It was the last great gift he ever gave me.

Because of these experiences, I became a grief therapist. That is not what I thought I would be when I was growing up.

I’m still a writer too. My fifth book is coming out in a few months. My parents would be proud. I’m married now, with a family of my own.

I became a grief therapist because, after my father died, I went on to work in hospice. What I saw there were so many missed opportunities around end-of-life care and conversations.

It is well known that hospice is available to people with less than six months to live, but research shows that the median length of a hospice stay is only 18 days.

Many debilitating symptoms, including pain, nausea, and depression, decrease substantially once hospice begins. This leaves us wondering how many patients are suffering needlessly for potentially months at the end of their lives.

What the studies aren’t showing is the impact this needless suffering and lack of awareness around the end of life have on the families mourning these patients.

Day in and day out as a grief therapist, I listen to stories of distressing encounters within the medical system.

My clients tell me that no one informed them their loved one was so close to death. They ruminate on the choices they were encouraged to make around treatments that might have saved their person, but didn’t.

I bear witness to the immense guilt they grapple with because they lacked information. They tell me again and again that they would have done things differently if they had known how little time their person had.

They sit in anguish over the missed opportunities to help their loved ones close out their lives with agency and dignity. They mourn the missed opportunities to say goodbye.

Last year, prolonged grief disorder was added to the Diagnostic and Statistical Manual of Mental Disorders. Some of its symptoms include identity disruption, marked disbelief that the person is gone, a feeling that life is meaningless, and acute emotions characterized by anger, guilt, denial, and blame.

Every client I meet who experienced these missed opportunities around the end of life, every client who didn’t get to say goodbye, who didn’t understand how close their person was to death, or whose loved one did not understand how close they were to death, meets the symptom criteria for prolonged grief disorder.

In fact, one known risk factor for prolonged grief disorder is the experience of losing a loved one in a hospital.

People experiencing prolonged grief disorder describe feeling stuck in time or frozen in their grief. They feel alone and isolated. Their relationships with loved ones suffer, as does their own health.

When we lose a loved one the way I lost my mother, the way so many people are losing those they love, we are being robbed of the kind of grief we deserve.

I believe the ability to grieve is inherent in all of us. I believe grief can be beautiful. It can be a way to honor the people we love. It can help us examine what truly matters and enable us to live more meaningful lives.

That kind of grief is not available to those of us who must first sort through the anguish, guilt, and blame that come with losing a loved one under circumstances filled with missed opportunities.

Where have we gone wrong?

Where? Let me count the ways.

The chasm between what we believe about end-of-life care and what our families face in reality is immense. We are at a crossroads. Our collective consciousness needs a transformative shift.

The issue lies within the very foundation of the healthcare system. There is an implicit bias that favors action over conversation and procedures over emotional understanding. It also reflects how society perceives the role of healthcare.

Isn’t it ironic that doctors, the very people trained to sustain life, so often grapple with facing its inevitable end?

Death is not a failure. It is not the opposite of life. It is part of life.

It is time for medical schools to place as much emphasis on communication, empathy, and open, honest conversations about the end of life as they do on pharmacology and procedures.

Whether you are a healthcare professional or not, it is time to demand better. It is time for society to advocate for a system that respects our wishes at the end of life, one that provides the comfort, care, and dignity we all deserve.

Each of us has the power to be an agent of change within our families, our communities, and beyond.

As I stand here with my heart laid bare, here is my plea: let us confront our discomfort with mortality. Let us prioritize open, honest conversations about the end of life.

For every story I have heard and every tear that has been shed, I have felt a burning need to champion this cause. Each story reaffirms a truth I can no longer deny: the inadequacies of our current system are leaving far too many grieving souls in their wake.

You, me, all of us, we deserve better. We owe it to future generations to make sure better is what we get.

I can’t sit by any longer. I can’t listen to story after story about a death that didn’t have to happen the way it did without making a promise each time to try to make a difference.

Here are five ways you can begin making a difference today.

First, embrace self-awareness. Explore literature, courses, and seminars about death and dying. Understand your personal beliefs about mortality. This is the first step toward meaningful conversations.

Second, foster open conversations. Whether it is at a dinner party or a community gathering, initiate dialogue about the end of life.

Third, advocate for better medical training. Lobby for curricula that focus as much on emotional understanding as they do on procedures. Our doctors should be equipped to handle every facet of life, including its end.

Fourth, prepare personally. Draft a will or an advance healthcare directive and share it with the people you love. Set an example for others to follow.

Fifth, engage with your community. Host a meeting, start a workshop, volunteer in hospice, or find another way to involve your community in these issues.

A few days before he died, my father turned to me and said, “Kiddo, if there were no death, we’d never know how sweet life really is.”

It was the last thing he said to me.

It’s true.

Death is not the problem. The missed opportunities to face it are.

Thank you.

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I’m going to ask everyone to close your eyes. Yes, sir, you too in the back.

I want you to imagine that we are at a cemetery. It’s the first of November, and the cemetery is lit by 6,000 candles. One candle for each tombstone, each beloved person, each story.

You see people of all ages at the cemetery, young people and older people. They all have one thing in common: each person is holding someone in their mind and heart.

They are all looking in the same direction because, if you look a little closer, you see a stage.

There is a singer-songwriter on that stage, singing a song he wrote for a friend who died from cancer several years ago. Then you see a poet reading a poem about what death can teach us throughout our lives. You see dancers performing a beautiful choreography about two loved ones saying goodbye. You hear storytellers sharing the lives of the people resting beneath the tombstones, the people who formed and built the cities, communities, and towns where we live.

You can open your eyes now.

Let’s see how we can bring that dream to life.

[Video plays.]

My name is Pieter Deknudt. I come all the way from Belgium, a tiny country in the center of Europe. It may be small, but it is beautiful, and there is a wonderful movement happening there. We call it the Mourning Revolution.

I’ll tell you more about that later, but first I need to tell you the story of Robbie.

When Robbie and I were teenagers, we lived in the same town, Deerlijk, Belgium. We each played in different bands when we were around 19 or 20 years old.

I had just started a band called Zinger. We played a kind of brass-pop music. Robbie was much cooler than I was, I have to admit. He played bass in a rock-and-roll band called Highway Jack, and they were pretty good.

In Robbie’s mind, he was the greatest rock-and-roll bass player in the greatest rock-and-roll band in the entire galaxy.

Once, his band entered a local competition. When they weren’t selected for the semifinals, he publicly called out the jury.

That was Robbie. Torn jeans, a leather jacket, and one foot planted on the monitor as he rocked the bass. When we watched bands at our local pub, he was always the person shouting from the crowd, “More guitars! I need more guitars! Turn them up!”

Then it was his birthday. There was a crazy party, and when they drove home at six in the morning, the car he was in missed a bend and crashed into a house.

Suddenly, Robbie was gone.

After the funeral, I stopped making music. Nothing would come out anymore.

It wasn’t until two years later that I suddenly picked up my guitar. It was calling to me in some way, and this song about Robbie came out of it, completely out of the blue.

The first of November was approaching, and I noticed something strange. Nothing was happening. No one was making plans to gather around Robbie or commemorate him.

The more I thought about it, the more I realized how colorless our mourning culture had become. I saw how little creativity, energy, and love we were putting into commemorating the people we had lost.

It had become so bad that on the first of November that year, there was an annual radio interview with a representative from the chrysanthemum industry.

The first of November is All Saints’ Day. In Belgium, we traditionally visit cemeteries to commemorate our loved ones, and we place chrysanthemums on their graves.

During this national radio interview, the host asked, “What are the latest trends?”

The representative said, “We had a nine percent increase in flower sales, so we had a really good year.”

I thought, come on. What are we doing?

It’s the first of November, the day when we commemorate the people we miss, and we’re talking about chrysanthemum sales?

That was the moment I swore I would take that man’s place on the radio news. I was going to help make the day more beautiful, warmer, and more human.

The following year, on the first of November, I stood at the cemetery. I had decided to play the song I wrote for Robbie, called “Grace,” near his grave.

I was terrified. I was scared of how people would react and worried that I might hurt someone’s feelings.

But I picked up my guitar. We had invited the local brass band, storytellers, and poets to help us create something beautiful.

I strummed my first G-major chord.

Any guitarists in here? No? Okay, I can say whatever I want.

[Performs “Grace.”]

People responded in such a breathtakingly beautiful and warm way that we decided to spread the idea.

There was a man named Milo who was in his sixties. He said, “Pieter, this is the first time I’ve returned to the cemetery since my son died 10 years ago. I never felt comfortable here. It didn’t feel good. But this brought me back. It felt beautiful and warm. This is how I want to do it from now on.”

Then he asked, “Can I join your team?”

I thought, wait a minute. I don’t have a team. I hadn’t been thinking about creating teams.

It was only later that I realized death is a team sport. Or at least grief is a team sport. Mourning is a team sport.

In the years that followed, more and more cities and towns across Belgium began organizing concerts in cemeteries. Today, these events take place at more than 150 cemeteries. You have to remember that Belgium is a tiny country. Nearly half of our cities participate.

We have a national television program broadcast live from a cemetery. We created a magazine that sold out. And we think we’re ready to cross the border.

I did some research to see whether anything like this was happening in the United States.

I asked ChatGPT, because that’s what we do now, “Can you give me some examples of music concerts at cemeteries in the United States?”

It told me that while there have been some concerts in American cemeteries, they are uncommon and often receive mixed reactions because of the sensitivity of the location. Examples may exist, but they are not widespread.

Ladies and gentlemen, what do you think I’m doing here?

Why am I here?

I want to know who is on my team.

Tracy promised me there would be a QR code right now. Good, Tracy. Thank you.

The QR code includes my contact information and email address. I want everyone who can help with this dream, in any way, to contact me.

I heard there is a break after this talk. I will be right outside that door, and I want to meet everyone here who can help.

To close this beautiful moment we’re sharing in this beautiful place in Los Angeles, I want to take a selfie with all my new team members.

Can we get some lights in here?

Let’s do this. Raise your hand if you’re still on my team.

Ladies and gentlemen, thank you so much. It has been a pleasure being here.