Bed or Chair? Does Spiritual Care Look the Same?
By Michael Eselun, BCC, Chaplain for the Simms/Mann – UCLA Center for Integrative Oncology.
I serve as the chaplain for the Simms/Mann-UCLA Center for Integrative Oncology. We are a multi-disciplinary team tending to the psychosocial and spiritual needs of UCLA cancer patients and their families in the outpatient setting. Primarily, I’m visiting patients in the infusion clinics while they’re seated—some would say trapped, in a recliner getting their chemo, often not even a few feet away from another patient in another chair— another story and another universe away. I also spent many years working on the inpatient side, in the bone marrow transplant unit at the UCLA Medical Center. It seemed to me that it might be worth exploring some of the differences between these two worlds and how that context of the ambulatory care setting can shape the spiritual care one provides.
The most obvious difference in these two worlds is that here in the infusion clinic, the patient is sitting up and in her own clothes. While perhaps seeming an obvious yet insignificant detail, I think the implications can be profound. On one hand the patient may seem more empowered, less vulnerable, while anchored to some degree in the “normalcy” of her world and identity. While the patient lying in the hospital bed, draped in a flimsy hospital gown may seem more vulnerable, exposed, isolated, and detached from all the familiarity of her world and the context that reminds her who she is. All of that is true in many ways– and in some ways it isn’t. And sometimes I find the assumptions we make in these settings can blind us to the spiritual needs beneath the appearances.
I used to be amazed, making my rounds on the bone marrow transplant unit, introducing myself to the sickest of the sick, and hearing back—“Oh no thanks. I’m fine.” Fine? Really? How is that possible? In American culture in particular, it seems we value self-reliance and independence so deeply that such a response would seem almost expected if not admired, no matter the circumstances. To admit that I need help would make me feel more vulnerable and perhaps even more embarrassed than I already feel—so, “No thanks, I’m fine.” That response can seem doubly commonplace then, in an infusion clinic, where the patient not only has no privacy, but his immediate concerns of the moment may have little to do with his cancer, much less his spirituality.
Build a Relationship
Since the ambulatory patient is often very much anchored in his world, his immediate mood and concerns may be tied just as much to the traffic that made him late, problems at work, or getting done with chemo in time to pick his kid up from school as it would be tied to concerns about his illness. Unlike the hospital setting, in the clinic, introducing myself to a patient on day one of his chemo, may be the start of a years-long relationship for him and me. I find we need to start where we are and first build a relationship—commiserate about the parking, ask about the work, sometimes long before we mention cancer, let alone God and spirituality—that may be weeks from now. Because these relationships are often longer term, I find there is a whole other dimension to the spiritual care I provide. What does it mean to “walk beside” for the long haul?
I’ve seen Stan every two weeks for the last three years as he gets treated for metastatic colon cancer. For the last few months, he has been in intractable pain. While a dyed-in the- wool Catholic, week after week, he’d much prefer to be distracted from his pain during our visits and talk about his passion—cars. In the hospital setting, the context is crisis based. In the clinic, there is an aspect of riding the wave beside the patient over the long haul of the journey– through the hopes, the struggles, the successes, the disappointments… and back to perhaps a new definition of hope. The thing is, I can’t ride that wave if there’s no relationship. For Stan, spending time with me talking about cars is more powerful than any prayer.
Yet sometimes appearances can be deceiving. A patient may be consumed today with work or family issues, or they may physically appear to be as healthy as you or me—and yet they could have a terminal diagnosis with a very aggressive disease and a life expectancy of only months. Those deceiving appearances can also shape how the larger circle of life responds to them, and in turn can constrain their access to available support, spiritual or otherwise. Suzanne has metastatic breast cancer and outwardly appears healthy, and yet she expresses frustration that, “people don’t realize I’m a cancer patient too! I need help!” On the inpatient side, there was never any doubt about who the sick ones were.
Assessing vulnerability can be a tricky business. On the inpatient side, while yes, one can be visibly weakened and isolated, it is also true, that for the time being all her needs are being tended to, around the clock by a team of the best professionals available. Clara, 73, fiercely independent and self-reliant by nature, unmarried, with no children, sits in her recliner alone in the infusion clinic wondering about how she will get a meal prepared tonight or make it up the stairs to her apartment.
Through another lens, that isolation in the hospital affords a patient a kind of anonymity, invisible to their everyday world if they so choose. The infusion clinic is a very public place. While yes, a patient in the clinic can still choose to maintain a kind of privacy from her everyday world, the clinic setting demands that her sense of herself in her everyday life confront this inescapable reality of cancer in a public place.
Ralph was diagnosed months ago and has undergone surgery for his cancer and been undergoing radiation, but it wasn’t until his first day of chemo that he was slapped awake to this reality — “Oh, now I’m a cancer patient! Look at all these sick people!” Up until then he could kind of pretend it was something he was just going through, an inconvenience. “I wasn’t a ‘cancer patient.’ Now I am.”
Exploration of Identity is a Key Component
I find that that exploration of identity is a key component to the spiritual journey of the cancer patient in either the hospital or the clinic setting. When all of those labels of identity to which we have attached ourselves are no longer true, or not in the same way, who’s left? Is there even an essential me beneath all those labels? Is she worthy of love? Is she capable of giving love?
Then again, the infusion clinic sometimes affords another kind of intimacy, not possible in the hospital—that is patient-to-patient…comparing notes, passing the time, sometimes developing deep friendships. Particularly in a teaching institution such as UCLA, there are often multiple patients on the same day treated by the same oncologist for the same exceedingly rare cancer.
Out there in the world Ruth and Janice would find little occasion for their paths to ever cross. They are rooted in different generations, geography, class, race, politics, and religious viewpoint. And yet here in the infusion clinic, dealing with the same diagnosis, they became soul sisters in a way…meeting on the most intimate ground of all, fighting the same battle for more life. And because of the intimacy of that sisterly journey, when Ruth arrived to clinic one day to find out that Janice had died, her grief was equally profound and layered with meaning and implications for herself. Weeks later she shared incredulously, “Michael I didn’t grieve like this when my own sister died!”
There’s another aspect to this public space that can affect one in a deeply spiritual way, and that is coming face-to-face with the comparisons of circumstance and suffering—you see them all as you’re escorted to your chair. Some take this opportunity to snap themselves back into an “attitude of gratitude.” “Hey, look, it could be worse, right? At least I’m not in as bad shape as she is!” That particular reading of the scales of justice, or one’s faith in a just universe cuts both ways. Because the very next sentence after, “It could be worse,” might be, “Why am I such a crybaby? What have I got to complain about?” Where’s the grace and compassion in that? Getting up close to those who are worse off can also really stoke the fear of, “Is that what’s next for me?”
I find that one of the hallmarks of my ministry in this setting, (one in which the lion’s share of patients would identify as “spiritual not religious,”) hinges on this theme of offering oneself grace to be a human being–to be where I am, as I am, feeling as I do. It seems so many of us come to an experience like cancer, already invested in a narrowly defined scorecard on what it means to be a “good cancer patient.”
When we don’t measure up to those preconceived notions, the suffering earns compounded interest. It doesn’t help when the larger culture can relentlessly reinforce those notions. “You MUST stay positive! Attitude is everything! You must pray harder!” Whether in a bed or a chair, for me the essence of spiritual care boils down to–being a witness, walking beside, offering the grace to be a human being,—it seems so simple. And it is. Though it’s not easy.
Originally published through PlainViews, a publication of the Healthcare Chaplaincy Network.