I Know More than the Hospice Staff

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When first admitted into hospice care, one of the patients mentioned they looked forward to the chaplain’s visit. In recent years, before and especially during his illness, this person told the admitting nurse about reading (and re-reading) the Bible cover-to-cover.

“There’s nothing the chaplain can say that I don’t already know about the Bible.”

Really?

Did humility, humor, or hubris influence our new patient’s claim? Were the words boastful or spoken to avoid more difficult emotions? What is easily said on the “surface” may hide deeper questions or concerns. Like, Won’t someone please listen to me? or perhaps Let me start with a subject I can control—knowing the Bible—to eventually risk revealing what is out of control . . . my fear of dying.

Many of the people all hospices serve have faith traditions with a unique book. The Hindu reveres the Bhagavad-Gita. Jews claim the Torah. Christians embrace the New Testament. Muslims honor the Koran. Some patients may know little about the sacred text at the center of their religion, while others might possess a scholar’s awareness. A life-threatening disease can cause one person to explore—for the first time, or with renewed energy—the words of her faith, hoping to uncover answers or encouragement. The next person might scorn his religion’s traditions because the illness proves God doesn’t care or never existed.

A hospice chaplain enters into a person’s life, from hours to months. The chaplain has no interest in interpreting, defending, or condemning any scripture. Instead, what is important to the chaplain is what is important to the patient. Even more essential, what are the real hurts and hopes in the shadows behind a patient’s knowledge, ignorance, or doubts about their faith?

What are the deeper questions?

All hospice staff have met and will meet family members claiming to be experts. There’s nothing the home health aide/nurse/social worker/doctor can say that the patient or caregivers doesn’t already know. After all, this is the information age! In every article I’ve posted for this hospice site, I’ve scanned the web to clarify or seek data. With a slick mouse click or an easy finger swipe, I can discover “exactly” what ails me. Or what is wrong with you!

  • What caused that cancer?
  • What is the best treatment for COPD?
  • Is it harmful to take morphine?
  • What are the adverse side effects of Ativan?

On we search, often acting as if we’ve become experts. Whether we read the Bible from Genesis to Revelation or memorize the Mayo Clinic’s details about my disease, we overflow with information.

Well, we overflow with something . . .

Often, we are fearful. Or doubtful. Or have shattered dreams. Or loneliness. Or anger.

A few years ago, I was anticipating surgery because of carpal tunnel syndrome. I’d gone to doctor, uncertain of why my wrist ached and several fingers were numb. Efforts were made to treat the problem with physical therapy. I was told to do or not do certain activities. I had an odd test that recorded how fast my nerves conveyed electrical signals up and down my arm. Eventually I faced surgery. These were my hands. I needed them to type on a keyboard, for hugging and handshakes, to hoist a wine glass, take my dog for walks, and for holding hands with my wife. I scoured the Internet, wanting to become an “expert” on the procedure and its aftermath. Much of what I found was the worst! Botched surgeries! Raging infections! Physical therapy scams! The web overflows with awful exclamation points!!!!!!

These days, a hospice nurse can be told she’s wrong about suggested medications for a patient because:

  • Dr. Oz reported . . .
  • WebMD warned . . .
  • On YouTube, I saw . . .
  • A Google search revealed A instead of B . . .
  • My cousin the pharmacist recommended . . .

Well, whatever was said or found, it contradicted the nurse. And so, patients or caregivers debate the nurse standing in your room, with your chart in her hands, and who is a phone call away from consulting your physician.

Will the patient argue with or listen to the nurse?

Will the caregiver quote random “experts” or learn from (and trust) the nurse?

In the time of dying, no one is an expert. Truly, I am glad sacred texts like the Bible or the Bhagavad-Gita provide comfort for certain believers. I am glad for the user-friendly knowledge on reputable websites. I am glad for family members that are medical professionals who bring their knowledge into caring for a spouse or parent or second cousin. I am glad people can answer a confident “Yes” when a social worker asks if they’ve completed a POLST or DNR form.

But whether a drug regime, theology, or a necessary form, I hope patients and caregivers, along with hospice professionals, can admit all forms of expertise are limited when we enter the sacred, scary landscape of dying.

When a person responds to the joys and sorrows of others as if they were his own, he has attained the highest state of spiritual union. – from the Bhagavad-Gita

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(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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