The Other "C" in Hospice Care
We withhold, we lie, we refuse, we wait . . .
When sharing about a new hospice patient, the nurse said, “Constipation and spiritual distress.”
And that was it!
In a hospice agency where I once worked, a hospice team (chaplains, doctors, nurses, social workers, volunteer coordinators, and bereavement) gathered weekly to review the patients. We’d remember those who have recently died, discussed the ones continuing with us, and took the first official “team notes” about the patients who had just entered into our care.
In most of those meetings, there were several patients with a sparse history because of their recent admission. There would only be the initial remarks from an intake nurse. However, if a patient had started with us several days before the meeting, the case manager nurse (and often the social worker) had an opportunity to visit the home or care facility. More had been learned, and therefore more could be reported about the patient. The information was listed in the medical chart, coupled with details for managing each patient’s needs. Pain would be reduced. Breathing improved. Potentially unnecessary medications were evaluated and might be discontinued.
If someone couldn’t speak for him or herself, a family member or friend will be identified as the patient’s primary “voice.” Though rarely an easy conversation with families, decisions will be made and charted by the social workers about the patient’s desire for cremation versus burial.
I recall one of the many weeks where we had several new patients. One, a seventy-something man, had entered hospice care late on the prior day. Only the intake nurse had spent time with him. When we arrived at his name on the list of new patients, the supervising nurse in charge of the meeting announced the initial specific concerns known about him.
There were two, as I mentioned at the beginning: Constipation and Spiritual Distress.
Funny, right? I admit to smiling when the nearly empty chart flashed on the screen where we projected its pages.
But it was also not funny and my smile faded.
Have you been . . . constipated? Yeah, see! I have. Everyone has. What misery.
I don’t have to go into detail—and you wouldn’t want me to anyway, right?—about how awful constipation can be. Many hospice patients, because of age, illness, pharmaceuticals, surgery, and a host of other maladies and circumstances, will have constipation concerns. They may be dying from cancer. They may have failing memories, temporary because of exhaustion or ongoing because of dementia. They may have a compromised heart. Regardless of what other problems exist, the patient longs NOT to be constipated. And you and I understand! Sure, cancer is rightly and fearfully nicknamed “the Big C,” but for some there’s the awful and uncomfortable “little c” of constipation.
The new patient’s only other known urgent concern involved his spiritual life. Soon a chaplain would visit him. Did he want the comfort of prayer? Was the patient angry at God? Had his disease undermined his once-confident faith? Were there questions he wanted to ask or thoughts he needed to share? Especially with terminal illnesses, we are vividly aware of the physical ailments, but it’s often the unseen—a conflicted or contented soul, an unsettling memory or a promise yet to be kept—that represents a patient’s paramount need.
Later, during a break in the meeting and after the new patient’s two concerns had been discussed, one of the chaplains mentioned a different patient she’d recently visited. That patient’s caregiver, a middle-aged child, had commented to the chaplain about their parent: “My mother thinks she’s constipated, but it’s just in her head.”
We both chuckled. And we both immediately stopped laughing.
You probably also know what the “little c” can be like. But it’s more than a description of physical discomfort. In our emotions, in our spirituality, in our relationship with some of the people who matter most, we can become “constipated.” This is especially true when we face a terminal illness. Whether patient or family or both, we withhold feelings. We refuse to talk about our most troubling concerns. We build a moat around our fears by telling white lies. (Or telling grim, dark lies.) We wait—and wait and wait and wait—until the “perfect” time to tell a loved one about our diagnosis or worries or both. How often does that waiting morph into regrets?
Later, as we grieve a loved one, we may bottle up our angry-awful-anguished emotions. Some literally shut down and shut the door. How can you not sometimes?
With physical constipation, a nurse can adjust medications. When it’s the unsettling primary concern for our body, everything possible will be done to help.
But sometimes, a patient’s (or family’s) worst form of the “little c” is in the head or heart.
My book, A Companion for the Hospice Journey is available at Amazon.