A Hospice Chaplain is Quantifiably Wrong

(*Photo by John Rothwell.)

“The nurses do things that can be quantified,” one of our hospice chaplains announced, “which is not like what us chaplains or the social workers do.”

With hospice, a patient is supported by a “team” of doctors, nurses, social workers, chaplains, home health aides, and volunteers.

Was the chaplain, a person and a professional I respect, correct?

What is quantified? It’s a word describing precision, numbers, and comparisons.

A nurse may ask a patient what her or his pain is like on a scale of 1-to-10 or (especially if a patient can no longer talk) to choose from a range of emoji faces depicting happy smiles to grim anguish. Nurses increase or decrease the precise dosages of medications based on experience, information, and established guidelines.

The medical staff in hospice—and this is one of the tough parts of patient care—needs to regularly report how a patient is declining. If a hospice patient demonstrates consistent improvement in their physical health, they certainly still have an illness (and can’t stop the aging process), but they may no longer be eligible for the hospice benefit.

  • Is the patient losing weight?
  • Does he require stronger doses of pain medication?
  • Is she eating less, or only liquids, compared to last week or month?

Yes, nurses quantify, with specifics, to discern a patient’s changes.

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Social workers also do some heavy quantifiable lifting. If you ask your social worker to help with VA benefits, they will provide contact information, appropriate forms, and likely make phone calls to assist with government benefits. Social workers can provide lists of local agencies that patients can hire for caregiving. Furthermore, a trained medical social worker is never above showing a friendly grin, but then sneaking in the 1-to-10 pain question! Many social workers I know have ready access to that handout with smiling to grimacing emojis!

But most social workers, and certainly chaplains, spend considerable time beside a patient talking about that individual’s feelings and failures, God and religion, old dreams or new dreads.

How can you quantify a prayer? A conversation? Answering questions? Sharing silence? Will the social worker chart that the patient worried that no one had taken his dog Buster outside since the morning? And so the social worker, that paid professional, spent time letting Buster do his “business” in the backyard? Will the chaplain, ever the expert on spiritual issues, be able to provide a document containing all of the reasons why God seems distant or angry to the patient?

If a patient frets over a daughter who can’t get off work to be with her in her dying days, the social worker may indeed use the proper (quantifiable) methodology to create a letter to help the daughter take an official family leave from work. However, openly listening to the patient’s anguish about her absent child was part of an open-ended, non-measurable encounter.

When a family is stunned by the reaction of the youngest adult son, who blames a vengeful God on his father’s terminal illness, they may ask the chaplain for help. How they long for the son to pray with the family around the patient’s bed! His father needs his son’s presence, not his hatred. The chaplain may chart in the medical records when she met with the son and how long their conversation was . . . but much of what happened included the non-quantifiable expression of feelings about forever losing a parent.

Yes, I understood why the chaplain claimed a distinction between quantifying the needs for physical well-being versus the incalculable ways that our spiritual and emotional lives are supported.

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However . . .

So much of what a hospice nurse or physician does has nothing to do with quantities or calculations or precise dosages.

(And I suspect the chaplain knows this.)

I remember being with a nurse as she changed a patient’s bandages. Foul-smelling, grim-looking cancerous tumors had burst through the skin’s surface. I held the patient’s hand while the nurse tended to the wound. Everything the nurse did was “precise” and she “followed the book.” But everything the nurse did was also accompanied by gentle actions and reassuring explanations. Later, the medical chart may have shown the pain meds used and described the procedures, but it would not contain anything about the nurse’s tender mercies.

Once I visited a home with a nurse, her hands full of folded dark blue towels. The odds were high that the family could witness a “bleed out,” when the final stages of dying might include a disturbing abundance of blood. The dark-colored towels could be used if that “worst” happened. Their color, rather than the usual white towel, could decrease the visual impact of blood as they tried to help the patient . . . their beloved. Yes, a nurse had ten towels in her hand. Yes, she was prepared to talk precisely about the possible, and troubling, next steps. But the non-quantifiable compassion she showed this family with her explanations was breathtaking to witness.

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Much of what hospice does, when it works best for patients and their families, is quantifiable. From the dosages prescribed to the completed forms, the calculations, analyzing, and yes, even pointing to an emoji face, provide clear information for medical charts.

But there are essential moments that can never be clinically summarized in a chart.

Kind words.

Shared tears.

Tender hugs.

The chaplain was right, except that he was (mostly) wrong.

(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.)

*John Rothwell’s picture of a hospice nurse with a patient is “borrowed” from this lovely article HERE.

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Comments

  1. I have worked in Hospice, the Unit Co-Ordinator to open the first in patient Hospice in my State. Most recently, I was the recipient for my Mother, my Father. I, the only child without extended family was alone in the hospital with my Father after his major CVA and before we could get an open hospice bed.

    You mention the bleed out being anticipated. This occurred. Dad Knew something horrible was happening, I in nurse fashion acknowledge this is scary, I know, and I Am getting help! Help never came, except in the tossed in 2×2’s as I catched the bleed in towels attempting to keep him from drowning in his own blood (drowning, the worst). No suction to catch it between his nose and his mouth. Horrific. No One cared. Not even the hospitalist I demanded come to the floor. His words echoed the “I Don’t Give a Damn!” to me as I demanded to know what happened and why no one helped? Yes, my Father heard. 🙁

    I Never witnessed this Ever before or heard of it. Twenty years after my Hospice nursing,

    Will you be so kind to tell me what happened, how this was “anticipated”? How did we fall in between the cracks with Zero support. Or the new RN who did not hook up his PCA pump while we…his son in law…grandson went down to breakfast after a Looong night (bleed occurred while son slept on another floor and husband went home to shower). RN told me his pain med did not get administered bc I wasn’t there to push the button…Day 10. And Dr did order a base line dose along with ability to administer for break through. Did Not read the order. So Dad suffered even More of this hospitals ineptness.

    Why was I the daughter not allowed to be the daughter as my parents died but thrust in as the nurse? Yes, they failed. Will you be so kind as to fill me in what I cannot find in searches etc and was never a part of the hospice landscape that I worked years in?

    • Linda . . . I am so sorry you had this experience. I don’t think there’s anything I can add that would help with the obvious, and honest, pain that you have from the difficult death your father had. It breaks my heart.

      One tiny, narrow answer I can give you, based on what I wrote: the nurse I was with who had the dark blue towels was a veteran hospice nurse. The patient we were visiting had a particular kind of cancer and, based on the nurse’s education and experience, she “guessed” that the last moments of dying could literally be bloody. She wanted to prepare the family for “all” possibilities. How she shared the information with them was equally tender and blunt. She had a gift for truth.

      Though I often write about hospice in “glowing” terms, and I do view hospice as a hope-affirming way to live and die, there are endless mistakes, failures, and disappointments in hospice care. I’m sorry that you and your family had one of those.

      Thank you for taking the time to read my thoughts and even more to share your reactions.

  2. I commented above with my question about the bleed outs. Neglected to mention I wasn’t “there to push the pca pump button thus she didn’t hook him up, or read the orders…as I was down having breakfast attempting to recuperate from the worst in hospital/facility death I had Ever observed or been a part of, How, why, questions to this day. I try to let go, he doesn’t suffer any more.

  3. Years ago I had the most bizarre free fall of deaths, first one, then another, another and finally the last one. All in a period of 18 months, all the same family and all with enough time to find hospice care.

    Each was with different nurses and doctors and even social workers but the chaplain stayed the same. Even the hospice providers changed twice. He was the one grounding connection.
    For the fourth death he arrived knowing because the address was the same but the first two were adult children.

    My first impression of him was that he was nice ( always good). He was a good listener, (important) and new to this forum. He eventually acknowledged that fact. He’d been on the job the first time I’d met him for only a year. He said I’ll have to ask and get back to you a lot. As you mentioned so beautifully, the medical staff have precise steps to follow and they can and do measure everything. Forms must be filled out, boxes checked, dated and signed.

    The emotional slog that the family and friends must wade through is not precise, can’t be quantified and measured in the moment for sure and sometimes never.

    That chaplain, with his limited knowledge of how the wheels and cogs worked, kept coming back and explaining his understanding of our question’s answer and going back when another question came up. He did it until the questions stopped and he did it with an obvious show of emotional connection and words like; this is hard and what else can I do? A few times other staff assumed that we were getting the hang of hospice because we’d just dealt with a death. We were logistically, but we were not emotionally. He never did that. He started fresh each time.

    Not everything went smoothly, even after we’d done this several times in such a short time. I think we are mistaken when we fall into the idea that death can be managed in a way that will move smoothly through some mythical steps to a Hollywood passing. I find that if things don’t go smoothly we assign blame when the truth is that we don’t know all the circumstances and if we did we would probably wonder how it worked out so well. I doff my hat to the people who do this work day after day.

    • Thanks for sharing these thoughts. What a difficult time, for you and others.

      Now, looking back, it must have been “interesting” to see a new chaplain’s learning curve. And I am so glad this increasingly familiar chaplain “started fresh” every time with you on what must have been an emotional roller-coaster. Take care . . .

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