Can We Find Hope in the Face of Death? *

 “When I get out of this crematorium, I am going to join the church community down the street; it has a bent toward social justice and a regular happy hour,” Joe said while holding his hospital gown to the side. He looked directly at me as I sprayed cleanser into his wound and carefully packed the site with moistened gauze.

Joe arrived at our hospice facility one week ago with pancreatic cancer and was declining at bullet train speed.  

“We are not a one-stop shop Joe. We only take care of people until they die, not afterward,” I replied.

He smiled and grimaced simultaneously as I placed tape over the dressing. Joe’s diagnosis and decline were sudden, fast, and tragic. He was a youthful 50 year old, newly remarried and loved hiking in the Pacific Northwest. His desire to join a church community was not necessarily avoidant to the reality of his situation, his mind simply could not fathom his imminent death. Joe’s body weight was down 15 percent to 118 pounds, and he only tolerated maybe three bites of yogurt a day. There was no way this man was leaving our facility. I wanted him to know this so he could make more "appropriate" decisions about his rapidly declining life. I gently asked him, “Joe . . . what if you don’t leave our facility?”

Joe shut down immediately; smile evaporated, banter closed. I awkwardly finished his wound care in silence.

When he died six days later, I felt a searing pain in my gut as I reckoned with my inadequate approach. He was just looking for a moment of relief from agonizing over his death. My inelegant question lacked openness and destroyed our trust. 

For years, I have contemplated how to bring hope to patients like Joe. How can I be hopeful and honest about their disease process? How can I be present to their existential fears and fuel an authentic conversation? Can I hold both hope and death in the same breath?

For years, I have contemplated how to bring hope to patients like Joe.

How can I be present to their existential fears and fuel an authentic conversation? 

Can I hold both hope and death in the same breath?

Americans love hope; it is one of our sacred values, right next to rugged individualism. Western medicine consistently delivers hope in the form of feeding tubes, ventilators, clinical trials, and cryopreservation. There always seems to be a potential cure or supplement or treatment in Mexico. Joe barely had the energy to brush his teeth let alone do 7 hours of internet research to find the next thing. I could have easily said, “Great idea Joe, let’s sign you up for Presbyterian Bingo next week,” knowing in my bones he would not survive. But I would feel dirty, like I was joining in the charade. 

Most of my hospice patients are out of treatment options and, like Joe, want to spend some time imagining a future. A brighter one. I remember my mom in the last month of her life, lying in her hospital bed perusing Architectural Digest magazines, planning her future kitchen remodel.

I studied narrative therapy this last year and found some tools that might offer a more elegant approach to holding hope alongside death.

Ask questions to find what is precious and meaningful. 

Joe’s desire to belong to a church community one week before his death likely involve complex layers that can be unpacked. Questions that clarify what is meaningful and precious to Joe, may bring an energizing hope even while a he is dying. For Joe, I could have asked follow up questions about his desire to join this specific church community.

“Oh, interesting Joe, tell me more about this church and why you are interested in joining?” If he wanted a community of people who share similar beliefs, we could have wondered about who in his life right now offers this for him. Perhaps we could have scheduled a visit with his brother in law who goes to this church. Maybe he simply needed to feel more support at this time, inspiring calls to family and friends and requesting visits to the hospice facility.

Further questions about Joe’s desire for a happy-hour-inspired spiritual community may have energized Joe or his wife to create an evening ritual with scotch and seltzer at 6:00pm. Maybe he wanted scotch, but perhaps he just wanted a consistent plan for visitors with a lighter tone.

A deeper conversation about Joe’s social justice values might have inspired a call to SeaWorld pleading for the release of orcas, bringing Joe peace and fulfillment in his last days on this planet.

These clarifying questions can highlight the urgency of the present moment without denying the reality of his death. 

Search for the absent but implied

  “I’m afraid of dying,” Geraldine mused carefully, sipping her chamomile tea and setting it gently on the quilted lap blanket covering her frail knees and legs. Me too! I immediately think. How do we get out of this awful and inevitable life trajectory? Geraldine arrived at our hospice facility weeks ago and her weakness prohibited her from getting out of her wheelchair today. She eyed me as if I had help, hope, the key to an alternative route. I remembered a mentor telling me, You will not have the answers to most of your hospice patients' existential questions, and that is okay. Silent presence and validation are enough.

I silently validated and nodded to Geraldine like, Yeah, death is scary. Geraldine looked disappointed with my silence, and with pursed lips she stared vacantly out the window. End of conversation.

These conversations (or lack of) haunt me. How could I have provided the more robust, engaging conversation she was searching for one month before she died? Michael White, developer of narrative therapy, offers the approach of “double listening” as a way to open up conversations and tune in to what is “absent but implicit” (White, 2000). Double listening searches for the needs and desires that are absent in statements such as “I’m afraid of dying.” 

With Geraldine, asking clarifying questions might get to the heart of the implications. Questions such as: What are you afraid of specifically? Do you fear pain? Leaving your loved ones? Being alone? If she was afraid of a painful death, we could have discussed medications and our hospice ethos of a comfortable death. We could have talked candidly about what peace meant to her, her feelings about opioids, or who she wanted as a bedside advocate. Together we could have found hope in clarifying her desires for a comfortable death as Geraldine faced the imminent reality of her death. 

If Geraldine felt fear about leaving loved ones, we could find a way for her to connect with them via FaceTime, phone-calls, or request for a visit. Perhaps she feared being forgotten, inspiring a creative conversation about how to connect with them after her death through writing letters to her grandchildren or recording a video to her three daughters highlighting her seventy-seven years of wisdom.

If Geraldine feared dying alone, perhaps we could have found ways to make her feel more supported by making a list of people she trusted. We could have called those loved ones to explicitly state she wanted them present at her bedside when she was dying, then taped this list at her bedside.

Deeper questions and conversations searching for what is underneath the statement “I’m afraid of dying,” can bring in a rich and textured framework when Geraldine’s life is pointing in one direction: death. Her story was thin, depleted, and dominated by despair. Clarifying what is absent but implicit may provide an energizing and laser-like hope that results in richer solutions to her storyline. We are not denying her death, we are highlighting her needs as she is dying.

The weeks, days, and months before one dies are potent with opportunities to clarify meaning and still find an energizing hope that does not deny the reality of their imminent death. By asking clarifying questions, elevating the present moment (rather than one’s imminent death), and searching for the absent but implied, I can help to provide hope to my dying patients. These narrative practices allow one to discover meaning and purpose as they are dying. This clarity and sense of aliveness can transform the present and the future.

There is nothing despairing about this.

*This story is fictionalized but based on many of my experiences as a hospice nurse.