The names and clinical details of all persons in this account have been modified to maintain patient privacy.
“He turned 23 in the ICU last week.” Palliative care chaplain Helen’s voice echoes in the hospital stairwell as she briefs me on the patient we are about to visit. “His friends even came in and decorated his room. But no one so young should have to celebrate their birthday on the transplant list.”
I am shadowing in the palliative care division of the chaplaincy department at Tampa General Hospital. Prior to medical school, I had intermittently considered pursuing a career in ministry, and I believe that the ministerial principles of caring for the mental, emotional, and spiritual needs of very ill patients are lessons that can enrich the practice of all healthcare professionals, particularly physicians. My primary goal in shadowing today is to understand a small part of the essential non-biomedical healing that patients are offered through hospital chaplaincy. What I witness turns out to be a primer in the tenuous ministry of hope for the very ill. Two patients stand out from this brief expedition, highlighting the subtleties of hospital hope and the forbearing wisdom with which it must be extended.
Ricky is lying propped up in bed with a giant plush heart pillow on his chest. His mom, whose face is creased with worry and exhaustion, anxiously tells us that Ricky is fighting a fever and they don’t yet know why. Helen approaches the bed, and I’m expecting her to say some sunshine-y, uplifting words. But she simply stands there, rests her hand on the blanket beside Ricky, and says, “This is not how things should be.” Reaching weakly for Helen’s hand, Ricky looks over and locks eyes with Helen, silently agreeing.
Back in the stairwell, Helen tells me that compassion for the very ill involves normalizing suffering. While our knee-jerk reaction to someone else’s pain might be trying to find the silver lining, this can leave patients feeling isolated. Needing an organ transplant at age 23 is tragic, infuriating, backwards, and upside-down. Verbal affirmation of this reality is how we walk alongside and support the bodies and souls of the sick. Qama et al. in a 2022 study describe this as “hope work,” using language and behavior to communicate the heavy reality of illness.1 It is no easy task, as many healthcare practitioners feel they are depriving their patients of hope by openly acknowledging difficult prognoses.1 However, demonstrating understanding of a patient’s situation can provide a safe harbor for them amidst the pressure to bow to toxic optimism or crushing hopelessness. There is great comfort in one’s terror of death, anger at the world or God, or deep depression being met with gentle acceptance and understanding that such feelings are natural and not something to be dismissed in favor of looking on the bright side.
Historian Kate Bowler, a stage 4 colon cancer survivor, is intimately familiar with the stark juxtaposition forced upon those journeying through illness. She speaks of being “worn out by the tyranny of prescriptive joy,” the paradoxical hopelessness that can arise from well-meaning others trying to light a sparkler during one’s dark night of the body, soul, and mind.2 Oftentimes what is most needed is a voice in the dark declaring that, yes, this is unfair in every way and making sense of it seems impossible. In chaplain Helen’s ministry, this open acknowledgment of suffering is coupled with a quiet hope, one that is best communicated through her presence at the bedside.
Chaplains come from many different faith traditions, and in Helen’s Christian background, hope is found in the perfect love and goodness of God. Christians believe in a promise of eternal life after death, looking forward to an existence free from suffering and pain (Rev. 21:4, NIV).3 But there are also promises like that of Psalm 27, which closes with the declaration: “I will see the goodness of the Lord in the land of the living” (Ps. 27:13, NIV).3 Standing beside Ricky’s bed, holding his hand, appreciating the magnitude of his situation, Helen is the goodness of God manifest. She is not commanding miracles from heaven, but she is bearing witness to the suffering of a fellow human, offering spiritual healing where medical interventions fall short.
Engendering false hope, however, in a terminally ill patient is a frightening risk that increases healthcare practitioners’ discomfort in speaking openly with their patients about difficult prognoses.1 Enduring countless treatment regimens with a cadre of grisly side effects for the sake of a miniscule percent chance of recovery can be the product of such futile hopes, ultimately depriving the patient of the opportunity to live their fullest life possible even as it draws to a close. Theologian Donald Capps explains that “to hope…is to place ourselves at risk,” because we open ourselves to the possibility of our hopes going unrealized.4 As I watch the reservedness with which Helen speaks to her patients about their futures, I learn that in the precarity of the intensive care unit or the hospice wing, cautious hope is the rule.
Reina is finishing her pills when we enter her room. She is 35, her kidneys are failing, and she is not a transplant candidate. All this I have gleaned from her chart, but medical documentation fails to capture the radiant smile and warm greeting she graces us with. Helen is confirming Reina’s decisions about her healthcare proxies. As Reina agrees that she wants her mother and grandmother to have control of her medical decisions should she become incapable of making her own, her tears start to flow.
“Oh, my dear,” says Helen, “this is not the way it should be. Mom and Grandma should not have to consider making these kinds of decisions for their child.”
Reina shakes her head, fingering the strand of prayer beads around her neck. “No, it is not. But you know, God is good. Maybe we won’t even need to use that paper.” She gestures toward the healthcare proxy form. Helen offers an empathetic smile and asks if Reina would find comfort in a prayer. Reina agrees, so we hold hands and Helen prays for the peace and comfort of God’s presence.
We’re smothering our hands in sanitizer outside Reina’s room when I ask Helen why she seems to shy away from openly offering hope for healing or recovery. She considers my query, then asks how I am defining hope. I think about it for two flights of stairs and a hallway before I realize the narrowness of my working definition. I have restricted myself to a future-oriented hope, something I am privileged of in the kingdom of the well.
Sitting at a workstation computer so she can document, Helen explains while she types. “In the hospital,” she says, “you never know what could happen. The last thing we want to do is offer false hope when there are so many unknown factors at play. Instead of thinking of hope only in a futuristic context, we can offer hope in the present, and even the past. Patients can garner hope from the presence of loved ones at their bedside and even from cherished memories.” After some more discussion, we decide that my modified definition of hope will be “a place to put your eyes,” somewhere to focus when everything feels out of control and wretchedly uncertain.
In JRR Tolkien’s “The Two Towers,” the wizard Gandalf admonishes his comrades: “I have spoken words of hope. But only of hope. Hope is not victory.”5 To offer cautious hope means sometimes forgoing the battlefield rhetoric so common in serious illness in favor of dwelling with patients in their suffering, existing as a present presence. Hope does not need to mean “victory” in the sense of recovering from a disease. It can mean reminiscing with close family and friends about the fullness of one’s life and experiences. It can mean enjoying the gentle touch of loved ones, listening to music, moving one’s body as much as is comfortable, or simply sitting in silence with one who can offer a loving, patient attentiveness. These past and present-oriented handholds of hope confer a level of agency to the very ill. This is essential in the advanced stages of disease because it encourages effective coping strategies that can increase a patient’s quality of life and may even affect the disease course.6
Reina was hoping for a miracle, an exception to the rule, while Helen foresaw a more sobering outcome. “[Sometimes] what is true is not kind, and that truth must be cloaked in kindness,” a kindness that looks like welcoming a patient’s desperate hope without stoking the flames of rashness.7 Hopes for a miracle do not need to be wholly dismissed, but it has been demonstrated that the most helpful strategies for increasing a patient’s hope in the terminal stages of disease are those that allow patients to live their final days without false expectations.1 A special wisdom is therefore required in these situations which can only come from knowing the patient well and understanding their desires for the end of their life. This is why chaplains are an irreplaceable component of the healthcare team: their unique skillset and time commitments allow them to understand patients on a level that physicians, nurses, or other healthcare workers may not be able to grasp. Preserving a patient’s hope, then, is a team effort.
As a physician, I will be what Helen calls a “doer of medicine,” someone who examines, diagnoses, prescribes, cuts, sews, explains. It is what I want to be after years of training and what patients expect of their doctors. But when medical knowledge is at a loss for assuaging an affliction like hopelessness, those we might call the “be-ers of medicine” are called up for service. These are chaplains, family members, friends, nurses, other healthcare practitioners, anyone who is willing to pause and be present with the patient in their affliction. With the increasing burden of clerical demands, physicians are pressed to spend less time at the bedside. Yet there is something inherently healing in one’s physician taking the time to simply be with them and learn who they are as a person. Only then can we aspire to offer our patients some form of hope, whether overt or subtle, confident or cautious. Therefore, to my fellow future physicians: spend the extra five minutes you don’t have, sit on the bed, hold the hand in the exam room, ask the question that might open Pandora’s box, sacrifice efficiency for humanity. And then also call a chaplaincy consult. Because hope is medicine, and our presence is the prescription.
1. Qama, Enxhi, Nicola , Nicola , Sara . “Health Professionals’ View on the Role of Hope and Communication Challenges with Patients in Palliative Care: A Systematic Narrative Review.” Patient Education and Counseling 105, no. 6 (2022): 1470-87, .2021.09.025.
2. Bowler, Kate C. Everything Happens for a Reason and Other Lies I’ve Loved. New York: Random House, 2019.
3. Holy Bible: New International Version. Grand Rapids: Zondervan, 1973.
4. Capps, Donald C. “The Wise Fool Reframed.” In Images of Pastoral Care: Classic Readings, edited by Robert C. Dykstra, 108-122. Des Peres, MO: Chalice Press, 2005.
5. Tolkien, JRR. The Two Towers. New York: Harper Collins Publishers, 1994.
6. Salamanca-Balen, Natalia, Thomas Merluzzi, Man Chen. “The Effectiveness of Hope-Fostering Interventions in Palliative Care: A Systematic Review and Meta-Analysis.” Palliative Medicine 35, no. 4 (2021): 710-28, : 10.1016/j.pec.2021.09.025.
7. Getter, Amy. “Precarious Hope.” American Journal of Nursing, 112, no. 12 (2012): 72. https://doi.org/10.1097/01.NAJ.0000423517.43338.84.