General, Multidisciplinary, Self-Care

The Art of Coping with End-of-Life Care

What do we do when we leave a visit feeling as though we have journeyed a thousand miles since the visit began?  When we arrived, all we knew were facts–name, age, diagnosis, recent medical history, comorbidities, referral reason, primary caregiver’s name and relationship to patient. Now, as we walk out the door, we can not comprehend all that has transpired–interpersonally, intrapersonally, emotionally, physiologically, spiritually. Time has been interrupted, then suspended, then reversed, then expanded, and music lingers in the air as something shared comes to a close and we have to leave the room to go… document.

Forgive me, documentation is an easy, obvious target. Everyone loves to pick on documentation, and its signature drudgery is not actually my point here. This scenario has countless other possible endings that are equally or even more unsatisfying.  Some may even be destructive. Sometimes, we are leaving work immediately after that visit to tend to critical responsibilities at home or in our community. Or maybe we have to go see four more patients. Yet, how can we really expect to walk alongside other human beings as they navigate death, and then step back into our own reality without finding some way to balance the weight of what we’ve experienced with an equivalent something else?

Once upon a seemingly average afternoon, I stepped into the hospital room of a patient far too young for death, barely strong enough to communicate, surrounded by a complex family trying to respect the patient’s and each other’s needs while they navigated an increasingly grim situation and their own intensifying emotions. Every ounce of energy I had was poured out in the process of attending to the interplay of relational dynamics and emotions, and then continually making decisions about interventions based on emerging needs. All the while, I was inevitably having my own experience of this fading human life, of the loss these loved ones were enduring, of the music, and of the way each person was relating to me. I had not just stepped into a room. I had stepped into their lives, not as an observer, but as a new character in their unfolding tragedy with the potential to really help, or to really hurt. Beyond all this, however, somehow the fact that the interventions were so effective, helpful even beyond what I had hoped, was what weighed most on me as I left the room, stumbling back into my own reality

My usual approach to self-care was in no way sufficient to bear what I was carrying in those next minutes, hours, and days. It will come as no surprise to all of you musicians and other artists out there that something in me was begging for a chance at expression. I needed to tell what had happened, but narration was not going to suffice. There was simply too much that had occurred on too many levels with too many indescribable nuances in music and interactions. What had only taken an hour or two to unfold would take a year to retell. Even then, who knows how much I would have been able to say I understood what had taken place. Along with a need for expression, I felt a sure need for comprehension.

Again, you musicians and other artists will not be surprised that creativity was the outlet that finally helped me express, comprehend, and rebalance. The process that eventually met my needs was writing poetry, even though I am not a poet. My poem is here for you to read. I have found that it represents not only that particular visit, but many other visits as well. For me, it captures much of what I experienced and what I felt the patient and family experienced, and it does so in a truer way than prose ever could. I hope that you find meaning in it, too, and that it reminds you to use the arts to help you find balance while you walk with others through life and death each day.

 

 A Thursday Afternoon Visit

I come.

You let me in.

I take in your world.

You don’t know what to make of me.

I wonder, “Will I be able to help?”

 

I work.

You sense a change.

I respond.

You begin to trust.

I pray, “Lord, give them what they need.”

 

I continue.

You let go.

I don’t mind.

You feel your feet touch the floor.

I sing, “Comin’ for to carry me home.”

 

I close.

You shake my hand.

We will never be the same.

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3 thoughts on “The Art of Coping with End-of-Life Care”

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