How to Say Goodbye: Reflections on the Role of Narrative Oncology

How to Say Goodbye: Reflections on the Role of Narrative Oncology

Guest Commentary

Jul 27, 2022

Dr. Anna Laucis headshotBy Anna M Laucis, MD, MPhil

At the premise, narrative medicine and narrative oncology explore the human side of medicine. Not just through the patient lens in terms of their journey and illness experiences, which often intersect with religious or other cultural beliefs, but also in terms of provider experiences and reflections. At its core, narrative medicine provides a creative outlet for thinking about these elements. It offers a space where providers and patients are allowed just “to be.” To be everything that being human means—to be flawed, to be hurt, to be angry, to be baffled, to be amazed. Emotions, essentially. Narrative medicine uses written word as well as other artistic media to delve into the inner workings behind these emotions and give them life and substance.

Particularly in oncology, patients and providers go through so much on the illness journey together and much of it is left unspoken. The pandemic experience also has given all of us much to reflect on: loss, fear, outrage, as well as examples of extraordinary courage, sacrifice, and resilience.

It is exciting to see a growing recognition for the special place that narrative medicine has in the world of oncology. I’d like to particularly highlight the Practical Radiation Oncology journal for creating a Narrative Oncology sectionThe ASCO Post has an even longer history of featuring narrative oncology work, spanning back to 2012; the publication’s Narratives in Oncology special issue takes the form of profiling leaders in the oncology community, helping connect us with the human side of these oncologists. The American Society for Radiation Oncology (ASTRO) has a legacy of this type of work as well, dating back to 2003 when it began the History Committee interviews of prominent radiation oncologists. These efforts are certainly exciting, though largely limited to individual profiles, aside from the PRO Narrative Oncology section that features poems and artwork. On that note, ASCO offers a more in-depth glimpse into narrative oncology through the Art of Oncology section of its Journal of Clinical Oncology, which is dedicated to personal essays and reflections on the human side of medicine. It would be great to see even more effort and work in this space.

Some examples of narrative medicine work I have had the honor of helping launch include the VOICES literary journal based at the Duke University School of Medicine, which features not only student and faculty contributions but also submissions by patients and family, as well as the Transitions Magazine, a wellness effort during my transitional year internship that also featured photography, writing, and patient/family submissions.

There is tremendous opportunity for further developing and carving out this space in the future. A particularly apt application of this type of work is in the setting of end-of-life care and palliative care, which closely integrates with oncology as well.

Original digital art created by Dr. Anna Laucis

Original art created by Dr. Laucis.

 

Recently I had the chance to reflect upon this during a social visit to the ICU to pay my respects to a dying patient—the very first patient with complex head and neck cancer I saw in practice. As I shyly stepped inside the sliding glass entry to his room, I saw his family at his bedside, intermittently tearful as they came to terms with his approaching mortality, as well as cheerful with smiles and laughs that escaped like butterflies from their mouths as his spirit filled them with joy. I comforted his family and lauded their efforts to respect his wishes of not undergoing further chest compressions or dialysis, and timidly offered my estimate that he would pass within hours to days, but at least peacefully and in no pain. “That was a lot,” I told them. “Many families don’t know what to expect and have everything done. But you are doing exactly what he would want. He is at ease.”

But was I at ease?

My emotions oscillated between relief that his family had accepted his approaching death and a distinct sadness that this would be my final farewell. He had done so well throughout treatment. Why did this now have to be his end, a simple pneumonia? Seven weeks of tough chemo and radiation and he had sailed through, miraculously so. But it was not a time for miracles. I was glad that his family was not holding out hope for one. But it just felt so unfair.

The closure for me, if there ever truly is one, was in saying goodbye to the patient himself. I approached him and talked gently to him, took his hand in mine, and took a moment to just be. In the stillness I was not a doctor anymore, but just a human, overwhelmed with the impossibility of the fragility of life and a tremendous respect for it all. In this space, this sacred space, blurred lines and emotions abound. Our daily concerns—work, the to-do list, wellness, burnout—have no meaning here. It is not a space filled with answers but with endless questions that I could never fathom to address in my lifetime. A sense that there is a greater purpose and a greater meaning, religious or not, and that we are all connected by this invisible thread woven into and through us, ahead of us and behind us.

That is the role I see for narrative oncology: to help us connect, and thread the needle, or at least try. So that we all may help each other, in our own unique ways, determine how to say goodbye.

As a glimpse into what narrative oncology can do, and what it’s all about, I’d like to share a poem I wrote reflecting upon the uncertainties that I saw my patient grappling with during lung cancer treatment and my own struggle trying to connect and comfort him in a landscape shrouded in an unclear future.

Am I enough?

By Anna M Laucis, MD, MPhil

Those days
Are tough when
You wonder
Am I enough?

       ~

That glance down
Tears pooling
As he reflects
Was it enough?

Surgery and chemo
Then radiation too
His lung cancer
Must be gone
…Right?

The privilege
To even catch
A glimpse
Of that struggle
The raw humanity

That’s what I treasure
But it’s also
What makes this
Role so… hard.

 

The hard truths
Of biology
That radiation
Has not yet
Conquered

And as the guide
In his journey
I cannot help
But think…

Am I enough?

 

I cannot even
Begin to fathom
The thoughts
He wrestles with

The brazen
Uncertainties
The abyss
Of the unknown

I guess what I can
And will offer
Is my time
And my attention

Glancing to see
His eyes like
Glass beads
I’ll pause and take
That extra moment
Just to allow him
To feel, and to be

So as he wonders
Was it enough?
The treatment
Now is done.

I’ll sit there
And reflect
Am I enough?

The answer
To that question
And to his fate
Hang in the balance

Despite the unknown
I comfort him
Say, “You did
Everything you could.”

Is that enough?
Perhaps not
But perhaps
It shows him
That I’m right there
Beside him
On this journey
As we face
Together
The unknown.

 

Dr. Laucis is a radiation oncologist at Green Bay Oncology in Green Bay, WI, who enjoys creative writing, basketball, and ensuring that each of her patients receives the highest quality of care possible.

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