(Adapted from a presentation at the City of Hope Cancer Center’s 2026 Interdisciplinary End of Life Symposium)
Welcome, everyone. It is an honor to be here with you. Thank you, Dr. Banerjee, City of Hope and all the planning committee and fellow presenters.
I want to share with you a story. This story is about meaning making in suffering at life’s end, but I warn you – it may not be what you expect it to be.
Here is The Scene
Years ago I had a palliative care patient whom today I will name Ernie. I will call his wife, Sharon. When I met Ernie he had stage 4 colorectal cancer. He was in a palliative care program, not hospice.
Ernie was an interesting guy – a musician, artist and social philosopher, aged 50. Ernie was a romantic and an eternal optimist and had by then survived two years longer than medically expected although his quality of life, by most standards, would be considered pretty intolerable.
He and his wife both believed his extended survival was due to their positive thinking and their undying love – more than all the chemo, radiation, supplements or color and light therapy.
They lived their lives with one goal: to be together longer with the ultimate hope of beating the cancer. Their hope and faith was spiritual, not religious.
One day I visited Ernie after about two weeks’ absence. I had been used to seeing him weekly. It seemed pretty clear to me that something had changed and that he was dying. As all here know, It is so hard to predict time to death and we are continually surprised in our personal estimates, but my first look that day told me he probably had just a few days to live.
He wasn’t yet actively dying, breathing a little irregular but very short on breath, no long gaps, no Cheyne-Stokes breathing, still swallowing well. Lips a little cyanotic, his skin was grey with well-creased pain lines in his forehead. Still alert and responsive but with very little energy or air.
Ernie and I had developed a trusting relationship, with me doing regular visualization and light trance journeys with him for some months to help him manage his more acute symptoms and to visualize, and hopefully promote, healing. We had a history of going deep together in these journeys and in our conversations.
On that day, recognizing the signs of rapid deterioration, and trusting our relationship, I asked him, “Ernie, are you afraid?”
He was silent for a moment and then he scowled and whispered with what little air he could manage to gather, “No, I’m not afraid! What is wrong with you people? This is just my body purging toxins.”
Apparently I wasn’t the first team member to visit him that day with concern but I hadn’t noticed anything new like that in the chart notes.
In my own arrogance and “expertise,” I wanted to say to him “Ernie, pushing death away now is denying the life and time that is still available to you! Wasting what little time is left. Time is running out for “meaningful” conversations!” Don’t waste this precious time in denial!
Of course, I did not say any of those things.
Meaning making at life’s end. That is what this talk is supposed to be about. How often do we see time run out for families stuck in their denial of death before the important things get said? – Things like the good goodbye, you know: I’m sorry; I’m proud of you; I forgive you; please forgive me. I love you.
Saying what you need to say to your loved ones and asking to hear what you need to hear before it is too late.
We have all seen families wait too long – finding too suddenly that time is up and it is too late for those last stories from a parent, shared in quiet voices to the children, in their final days and hours.
We all know how fast things can go south with our patients.
Ernie and his wife, Sharon had meaning in every moment they were both alive together, however difficult. Every golden-gate sunset they shared from their highrise with their floor to ceiling windows.
Every gentle touch. Every soft word. Even with the physical suffering.
They knew very well what they needed and their relationship was the primary one they were concerned with. They had supported each other for 33 years through thick and thin, win and loss and, according to both, had never, in all those years, raised their voices in anger to one another!
Of course they needed to deny death! And their denial had kept them unified in their love and life for two extra years!
I never saw Ernie again. He died three days later never having entered hospice. I checked in with his wife a couple of times after her husband’s death. Sharon grieved her loss in healthy ways and three months later was doing pretty well.
Naming the Reach
“No, I’m not afraid! What is wrong with you people?”
I hadn’t recognized it, but in truth, I had wanted to somehow, in however small a way, fix Ernie’s dying, and lessen his suffering by making it more meaningful … on my terms… and limit my own suffering as a witness to his.
I wanted to help him get to the good goodbyes, the closures and completions, the last stories and wishes and “I love you’s”.
You know, the sacred vocabulary of good palliative care.
I wanted to give Ernie and his wife the fix that survives renunciation of cure.
A part of the sacred vocabulary of palliative care IS meaning making, isn’t it?
How can I be questioning this professional and cultural wisdom that is essentially palliative liturgy?
This is what we all want! The making of sense and meaning where there is intolerable terminal suffering and tragedy and trauma and dying and loss and grief.
As hospice and palliative care providers, doctors, doulas and nurses and therapists, the one instrument we’re still allowed to reach for after we’ve given up the curatives, given up all the hopeful medical interventions, because it looks like accompaniment and carries none of the shame of failure – the last reach past symptom management …, is meaning-making.
My impulse – my impulse – as a properly trained clinical chaplain and compassionate spiritual care provider, was to try to fix something that Ernie wasn’t getting or might miss out on. To “help him” not miss an opportunity for some late stage meaning making.
Time was running out for him and his family.
What is wrong with you people? Then, that “Oh… Damn!” realization:
I had blown it. I had completely missed where he was and what he really needed; completely failed to accompany him in a compassionate presence, the hallmark of my profession!
Me talking instead of listening!
You here today, many of you, if you are professionally palliative, have mostly renounced fixing. That’s part of our founding identity as palliative care providers, the thing that separates us from the curative machine that we often also partially define ourselves against.
And meaning-centered care is precisely the form that fixing takes after you’ve given up cure. It is the fixing a palliative clinician is still permitted to do.
Having renounced the curative protocol, we keep that one instrument – the meaning-making one, because it looks like accompaniment and it feels like presence, and it carries none of the shame of the failed or discontinued curative reflex.
But it can be the same flight from helplessness, albeit in more acceptable clothes. You know, you leave your labcoat in the car and don the warm, soft sweater embrace.
The Tell in the game, is the timing.
The seasoned clinician – chaplain, doctor, nurse or social worker, who has truly let go of fixing, still reaches, in the patient’s room, to the dignity question, the legacy project, the “what has given your life meaning” patient prompt.
The thing to notice is precisely when that reach happens.
The thing I want you to notice: If you watch for it you will see that it tends to arrive at the exact moment your patient’s silence or despair begins to become unbearable – to you, not the moment your patient signals readiness.
The reach away from the suffering into meaning-making is all too frequently timed to the caregiver’s discomfort.
The Flight
Ernie had pinned me to the wall with his words – judgment and need expressed simultaneously. The weakness of his breath that barely powered the words past his teeth sharpened his spear point.
I felt exposed, alone, incompetent, vulnerable.
I could feel and see myself standing at his bedside as though I were looking down from the ceiling on myself and him, and his wife, Sharon.
They were the suffering judges of my incompetence.
Had I just taken away some bit of hope that was crucial to his surviving a few days longer? How could I have missed this?
Where was my head, or my heart, where were my trained eyes and ears?
What would Alice, my former clinical supervisor have said to me during the verbatim review? What can I learn from this to make me a better chaplain?
I know what she would have said: “Bob, what were you FEELING?”
My head was buzzing. I was in my own kind of denial – but fighting to not be. I could see a white cloud of fog all around me the way I did when I was faced with a math problem in school that I didn’t know how to solve and was ashamed that I could not and I began to panic!
Fear, shame, numbness.
That is what my mind and body did in that moment, pinned by Ernie’s judgment against the wall of his San Francisco 12th floor highrise overlooking the Bay, exposed, alone, incompetent.
And then the buzzing, my flight upward into the ceiling-corner view, the interior cascade: Had I taken his hope? How could I have missed this? How can I salvage this?
Listen to this! Every one of those questions I raised to myself was a reach away from and not toward Ernie and his wife!
They were me reaching away from him and his suffering, toward clinical assessment and intervention, toward correction, or toward the future improvement of a chaplain who hopefully wouldn’t feel this way ever again.
I fled my own helplessness into professional self-improvement at the precise instant a dying man had told me the raw truth about what he needed from me.
Ernie hadn’t just caught me trying to fix.
He caught me, cold, in my unconscious abandonment of him, and I watched myself try to escape his catching me there in real time.
A butterfly pinned to the wall.
That white cloud was a gift.
The math-problem cloud. It was the tell my body gives me when it hits something it cannot solve and refuses to just stand inside of it but instead soundlessly panics.
I would bet that every clinician here has a version of it, the buzz, the going-abstract, the sudden urgent question that arises internally, … the question you don’t share with your colleagues… or chart.
Ernie was holding thirty-three years of love and had long outlived his prognosis, and he needed no course correction from me.
The denial I was allegedly saving him from was only a tidier fix to my own suffering.
The clinical skill needed here was to distrust my own clinical certainty. The clinical skill needed was for me to notice that my reach to fix his meaning-making was timed to my own discomfort, not his readiness and not his need.
Ernie did not need me to be right about him. He needed me to not be so sure.
So, I came back to him, rather than hide in my shame and my drive to be better.
The Descent
I had failed. So what do I do now? I grabbed a nearby chair, pulled it to his bedside, and… I …sat …down.
I brought myself to his level – physically close to his need.
The shame, the buzzing, the white cloud – they were the exact data telling me I needed to reach, not away, but toward.
I didn’t discard my feelings. I stopped fleeing into them, stopped letting them run the show, and I let it become information rather than command.
I pulled myself down from above because I saw that I needed to be present with Ernie. What I felt did not matter unless it resulted in my being present as Ernie and Sharon needed me to be present.
Being a better chaplain in the future was irrelevant if I could not be a better chaplain right now. What really mattered was what he felt, she felt, they needed.
Of course, it did also matter what I felt. That was critically important information. This is one of the first things one is taught in clinical pastoral education.
But our feelings and beliefs, I might add, are there to inform us, not to be projected or ignored.
So I came down from the ceiling because I saw Ernie needed presence more than he needed my feelings to be resolved.
I had wanted, in my heart, but also in my arrogance and discomfort, to give Ernie a meaningful conversation – to “help him” find and make meaning and it was precisely the wrong move.
What actually repaired the moment was wordless and downward – toward Ernie, toward his suffering – To. The. Chair. Eye to Eye..
That dreaded line, “there is nothing more we can do” is often, really, “there is nothing more I can bear to do here.”
This makes me wonder if the oncologist, in her often impossible role as hopeful healer, may carry the most unmetabolized grief in the room, she is given no ritual and no permission, even though she is always fighting the odds and entropy.
Patient and compassion and patience are their words too.
What can the oncologist do with “there is nothing more I can do?”
The Words
Communication. Compassion. Caring. Patience. – the words that guide and inform my own work – the words that hopefully guide and inform all of our work – the words we practice with, and strive to live by:
Three of the four, communication, compassion and caring plus the word patient itself, come to us from the same Latin root: pati, meaning to suffer, to undergo, to bear.
Compassion is compati: to suffer with.
And patience is the capacity to undergo without fleeing.
And the patient is, literally, the one who suffers.
Even passion, as in “the Passion,” derives from the same root word: suffering.
And the word care is older and heavier than the clinical care management meaning we’ve made of it: the Old English cearu (“CHAE-ah-roo”) meant sorrow, grief, anxiety… not efficient solicitude.
Communication is the one outlier word, from the Latin communis, meaning shared, gift, and duty; but its sibling is communion, the making-common of a thing, sharing in it rather than transmitting data across a gap between speaker and hearer.
So the palliative lexicon, perhaps the gentlest, the most beautiful vocabulary in medicine, turns out to be a vocabulary of suffering and shared burden.
Our field has spent decades saying these words with the suffering part, especially the shared suffering part, sanded off. I want us to put it back.
The Discernment
To my mind, the chaplain’s job, and perhaps all hospice and palliative care providers’ jobs, when and if possible, is to palliate spiritual suffering.
There are two kinds of spiritual suffering, and they inform the need for opposite responses.
One kind of spiritual suffering is when there is a genuine collapse of meaning. This is where the psycho-oncologist Dr. William Breitbart’s and the existentialist philosopher Victor Frankl’s work in meaning centered psychotherapy, is a real gift, and meaning reconstruction is both possible and merciful.
In meaning-centered care you identify what has made, still makes and will make life valuable to the individual for the time that is left. Things like nature, family, grandkids, companionship, work, humor, dignity, friendship and love, and living memories.
You examine identity, try to navigate a changed present and future to cope with the physical decline caused by the illness or the accident or trauma.
The clinician will try to recognize that the patient is losing control of his-her life but still has the freedom and capacity to choose their internal attitudes and responses to the suffering and changes.
Finally, the person, in reviewing their past, present and expected future, tries to draw a line of continuity through what they have done, accomplished, lost, and will leave for, the loved ones who will survive them.
In other words – the task and opportunity is to create a new, narrative that includes or incorporates what they will leave behind when they die.
The other kind of spiritual suffering is not a problem to be solved. It may look like it at first. Rather, it is a hard truth simply to be witnessed. Sometimes, simple witnessing is the only appropriate human response to the unbearable and unredeemed.
With this kind of spiritual suffering, reaching for a meaning-making protocol is not the indicated care. Here – meaning making is escape.
It is abandonment wearing a helper costume.
Here, the task is to be fully, closely, present.
Despite the personal cost. Despite the impulse to help with the meaning problem because what is most needed is simply compassionate presence.
Being present with the suffering with as much self awareness as possible.
And yes, I am aware of the personal emotional cost of this kind of unescaped witnessing to the witness. To us… but…
Sometimes at life’s end and death’s threshold, the meaning-centered intervention is to stop reaching for meaning and simply get closer to, make yourself vulnerable to, the suffering.
Vulnerable and present to the suffering of the patient and his family, and to our own.
And this is what I am going to leave you with:
The clinical skill called for here with end of life suffering is not another technique for manufacturing meaning. It is the discernment and courage to tell the two types of suffering apart, and the courage to put the tool down when it’s the wrong tool.
I said that the clinical skill of discerning the difference between a crisis of meaning that can be addressed vs the one that must simply be witnessed was the last thing I was going to leave you with. But I realized that what I want to leave you with is this:
There is a reason we all do this work and it is the same reason I encourage your staying vulnerable to the suffering of others as well as your own.
The reason IS the same: It is love. You love them. They are worth it. You are worth it. Admit it. That is why we do this work. We Love.
Thank you. May a Spirit of Love hold your patients and their families, and you.
NOTE: I will be doing a followup to this article. During this professional presentation I found myself in tears at a number of places – this with a professional, clinical, medical audience. Part of my point in the piece was to raise up the notion that we clinical professionals do experience suffering when we witness the suffering and death of those we care for. We do what we do out of love. Both the suffering and the love, need to be, I assert, recognized, appreciated, accepted, and metabolized for our own well-being and to make us better clinicians. Bob