What About the Other C in Hospice Care?

alone

When grieving a loved one, we may bottle up our angry-awful-anguished emotions . . .

When sharing about a new hospice patient, the nurse said, “Constipation and spiritual distress.”

And that was it!

Once a week, in the first hours of a work morning, a hospice team (chaplains, doctors, nurses, social workers, volunteer coordinators, and bereavement) gathers to review the patients. We’ll remember those who have recently died, discuss the current and ongoing patients, and take the first official “team notes” about the patients who have just entered into our care.

In most weekly meetings, there are several patients with sparse information because they were admitted in the prior twenty-four hours. There will 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) has had an opportunity to visit the home or care facility. More has been learned and discerned, and therefore more can be reported about the patient. The information will be listed in the medical chart, coupled with details for managing each plan of care. Pain will be reduced. Breathing will be improved. Potentially unnecessary medications will be evaluated and may be discontinued.

If someone can’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, along with other impossibly difficult choices.

Last week, 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 only two so far: Constipation and Spiritual Distress.

Which was funny. And I smiled when the nearly empty chart flashed on the screen where we project its pages.

But it was also not funny and my smile faded.

Have you been . . . constipated? Yeah, see! I have. Everyone has.

I don’t have to go into detail—and you wouldn’t want me to anyway, right?—about how distressing 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 her (or his) parent: “My mother [or father, to muddle the patient’s identity] thinks she’s constipated, but it’s in her head.”

We both laughed. And we both 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. That waiting can morph into regrets.

Later, when grieving 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 try to 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.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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