Bearing Witness to the “Existential Slap”

For the cancer patient, many occasions of temporary victory over death may exist. However, at some point it becomes undeniably clear to most patients that the only outcome of their situation is death—existence will cease. The moment of this awareness… [is] the existential slap.¹

What does it really mean to be in control of one's death after the existential slap? Real control may be an illusion when considered against the backdrop of impending and choiceless existential decline. Here we tell the story of Matteo, an infectious disease physician at the end of his life. We share this experience as an interdisciplinary team who has struggled here and in other cases to be fully present with the aftershock of the existential slap.

Matteo was in his 60s with a history of stage IV lung cancer. Throughout his journey, Matteo suffered from progressive dyspnea despite empirical treatment with antibiotics, steroids, and oxygen. His disease continued to progress and when we met him, two back-to-back hospitalizations with multiple complications had exacerbated his physical deterioration. It became evident that Matteo was nearing his death. Now dependent on high-flow nasal cannula, discharge home was not possible and inpatient hospice was unacceptable to him. The palliative care service was consulted.

When the palliative care specialist entered the room, Matteo started the encounter by saying he understood his prognosis and that he wanted assistance to “help [him] die.” After exploring underlying grief and other relevant concerns, it was evident Matteo was a man who valued planning and order in all areas of his life. In fact, control over his autonomy empowered him tremendously. In the hospital, the rhythm of his routine had become painfully out of sync with his spirit. Adjusting to having no control was exquisitely painful to someone who—by nature—had been the master of his life and work.

It was not that Matteo was asking to die. Rather, it was clear he preferred death over the alternative of living in his current state. He discerned with the chaplain where God was in all of this, in light of his beliefs and what “allowing a natural death” looked like. He ultimately decided to decline continuation of the high-flow nasal cannula and was explicit with his knowledge of the implications, which were sure to be acute respiratory failure and death.

Matteo was divorced with two children, a 22-year-old daughter and a son in his late teens. He planned to see his children the following day and asked that we remove his oxygen after their visit. In the meantime, he wished a proper anointing by a priest, although he hadn't practiced his faith for many years. In keeping with his character, Matteo wanted to ensure the proper staff and resources were in place to begin his terminal withdrawal of respiratory support promptly at two o'clock in the afternoon. He collaborated with his nurses to agree he would be bathed and given all requested medications on time. He was openly and quite gracefully preparing for his death.

Matteo was in a long-term relationship with his partner, Angela. In her presence, he expressed feeling fully alive, appreciated, and dignified. He wanted her near him always. His relationship with Angela allowed him to engage in personal emotional healing for the first time in his life. He reported that he was spiritually at peace and felt “blessed with love.”

Beyond his family, Matteo had quickly co-created open and trusting dialogue with his oncology team, nurses, and palliative specialists. In roughly 48 hours, the involved staff and Matteo had formed deeply intimate relationships, discussing the most sensitive of information with great emotional safety and transparency. He had fostered his own reliable system of support that would accompany him into his final moments of lucidity and beyond.

In the hours before he died, Matteo appeared shaken. He was shaved and bathed. He held back tears and continued to find meaning during what he had decided would be his last day alive. Matteo said that morning, “I'm a lucky man… I can take the reins from here… I will be holding the hand of a woman I adore, who gave me back my life for the rest of my days, by seeing who I am.” In these vulnerable moments, he made the ineffable aspects of his legacy clear to all: integrity, choice, awareness, and dignity.

The team entered his room a few moments before the agreed upon time. He sat on the side of his bed with Angela. We reviewed the plan for respiratory support withdrawal. Prior to this moment, he had refused any medications that would potentially compromise his cognition. His body had been working overtime to breathe, speak, and stand. Finally, he wanted comfort and ease. Our chaplain led the group in prayer. Matteo laid back in bed and we began the weaning process. Morphine, lorazepam, and the team's presence synergized to meet his symptoms at the point of discomfort, easing his thoracic quivers and softening his grimaced brow.

He died only a handful of minutes after his oxygen was removed.

The chaplain offered a blessing in words familiar to Matteo's religious background that were requested by him before the day's events. We remained silent for some time. Angela walked us to the door and said, “His death was everything he needed it to be. I only hope mine is like that.”

Matteo died on a Tuesday in April, holding Angela's hand and cared for by a team of interdisciplinary staff members. We exited the room and stood in a poised hush in the hallway. Our tired eyes tried to find a comfortable space to rest. After a few minutes, we moved to a private space to process the experience together.

Bearing the Weight of Witness

On the surface, this is a story about a man who demonstrated informed agency in declining a life-sustaining intervention. Matteo responded to the existential slap with resilient and inspiring coping strategies that nurtured an experience of existential well-being and many displays of control in the present moment: finding meaning, establishing safety and support, and deliberately leaving his legacy. In many ways, the proximity of death appeared to awaken him to many tangible opportunities to express and receive love and demonstrate gratitude for a life well lived.

For many of us, this case sparked a broad array of complex feelings in the wake of witnessing the existential slap, including fear, distress, worry, beauty, and gratitude. In most cases of terminal life support withdrawal, patients are comatose or sedated and it is the family who makes the final decisions and preparations. On this day, it was a lucid and passionate physician who expressed his wishes clearly and without reservation.

One of the most challenging moments was when the palliative care nurse practitioner (NP) gently invited Matteo—who had become anxious and suddenly quite talkative—to lie down in bed after checking in about his readiness regarding the day's plan. Matteo looked at each one of us with wide active eyes reflecting an understandable mixture of both apprehension and thanks. None of us knows exactly the depths of what those eyes were saying but he quickly relaxed and reclined with our assistance.

The profound impact of that last moment… the gravity of the act to come… the surreal heaviness of the room—he looked at the palliative care NP and said with a smile: “I trust you.” We watched as Matteo embraced his partner, settled into his body for the last time, and nodded to our team to proceed. The definitive withdrawal of life-sustaining therapy—although ethically justifiable—continues to haunt some of us in light of this extremely vivid interaction.

A critical element of the day's affairs was our team cohesion and emotional support for one another. The primary nurse was on staff orientation at the time and yet was committed to “holding vigil over [her] patient.” The physician assistant was also in training with the palliative care team and stayed available and engaged throughout. The primary team NP was in the late stage of pregnancy, creating new life as she ushered the passing of another's. Our chaplain emanated a contagious spiritual fortitude. Our social worker offered therapeutic expertise that allowed us each to express our humanity in the context of high-stakes clinical obligations. Our team of palliative and oncology NPs held each other up with eye contact, verbal encouragement, and sheer unremitting presence. Many nursing staff were at the bedside with the willingness to provide whatever was needed. There was a palpable air of sadness and yet a seamless flow in knowing we were honoring our patient's wishes. Our debrief allowed for tears, comfort, and an open expression of care for each other and our work.

This case was life changing for us all. Perhaps the challenge in this case is how painful yet “perfect” it felt for our team. Here we had a patient, choosing to forgo life-sustaining measures, fully capable of deciding his care, and also overtly aware he was at the end of his life. We shared a mutual team appreciation and compassion for the patient, and have had ongoing opportunities to process the existential weight of this case. And—yet—there continues to be a piercing awareness of both the sacredness of the experience and the reflective grief it awakened within each of us.

Matteo's story is illustrative of the elemental opposites that often come to dine at the existential last supper. Choice and infliction, calm and wrath, camaraderie and aloneness, peace and anguish, faith and despair, and flurry and stillness—all intersecting to create a stir that can be quite arduous for even the most durable of spirits. And yet we—as the ones who walk alongside those doing this hard work of living while dying—must seek to create a space that can hold all of it. This is no easy task. It means bearing witness with a commitment to finding hope. To encounter hope under the gaze of the existential glare and then to splendor in its possibility for just that moment… that is grace.

Yes, there is always something to hope for. There is this moment… and if we are so fortunate, there is a next…. and we exist “right here” and “right now.” Our grace exists in our “now-ness.” Matteo showed us what power looks like in the midst of that “now-ness”; he transformed choicelessness into control.

Bearing witness to another's existential slap can cause peripheral wounding for all of us; bruises that require care and patience and that virtue we don't utter nearly enough in this work—love. All of us formed a special and strong love for Matteo. We showed that love by caring for him with devout nurturance of the control he sought and fulfilling our obligations to serve as both professionals and as human beings. Bearing witness is not a passive task; it calls for grit. The bearing of witness is an active and engaged privilege that has the potential to provide all those things so many of us seek: meaning, hope, and connection.

In this case, endless support seemed to enter the crisis space to sojourn with Matteo through an existentially uncertain passage, with clinical and interpersonal expertise, empathic understanding, spiritual support, and family accompaniment. His death led to painful sharing and growth-inspiring discussion between staff of all levels that would not have ordinarily occurred. His self-knowledge has led us all to a deeper understanding of our work, our lives, and our roles of service.

How do we apply the lessons we have learned in Matteo's case to patients who are unconscious or otherwise incapable of choosing for themselves? Or for the individual who is unable or unwilling to find acceptance in the context of a terminal prognosis? For many diagnosed with cancer, it may be safe to assume that a “cure” is often their main objective. End-of-life care is often not mentioned until clinicians feel we have run out of options to quantifiably extend life.

It appears that—in some cases—we seemingly “conquer death” with curative treatments. But all too often we come to the impasse in the wake of the existential slap where cure eludes us and emerging, sometimes frightening, realities must be navigated. When cure isn't possible, maybe we have the power to choreograph the “best possible death,” when scientific, psychological, and spiritual resources are privileged to intersect in a moment that will not be forgotten.

Funding Information

The authors acknowledge the NIH/NCI Cancer Center Support Grant P30 CA008748. W.E.R. is funded under NCI award number T32 CA009461.