Hospice May Confront Our Habits

habit sign

Please ignore what I’m about to tell you regarding handling a hospice patient in the final hours or days of their life.

Hmmm?

Let me rephrase that first sentence: don’t assume I’m correct when wondering if turning a patient in hospice care every two hours near her or his last breath is necessary.

Hmmm?

One of the nurses at our weekly hospice team meetings—where the staff gathers to review each patient’s condition and needs—mentioned she’d read an article questioning the value of turning a patient near the end of life. She wasn’t recommending a change of policy for our treatment of dying patients, or suggesting that some patients be used as “experiments” to see how turning versus not turning impacts their well-being. Mostly, she seemed to be asking about how to improve the quality of life for families and their loved ones as they face the final days.

Based on how other nurses in the team meeting reacted to her comment, regularly turning a patient is an essential aspect of patient care training. That makes sense. By shifting someone, if only a gentle move, bedsores and skin tears and bruising might be reduced or avoided. It’s important for our bodies to be in motion, minimally active.

After breaking a leg while backpacking in the early 1980s (“It’s a tib-fib spiral fracture,” the surgeon had announced after screwing pins into the two bones of my lower left leg, “It’ll take a long time for recovery . . .”), I was shocked at how quickly the hospital nurses demanded I get active. I just wanted to groan and complain! Indeed, even before I could dangle my one good and one bad leg over the bed, they had me exercising while flat on my back. How I loved the butt cheek squeezes! Give me 100 squeezes, kid!

Keep the body moving. But what about when the body—when our loved one—is near death?

In that time, our old habits and routines are strong influences.

We know we need liquid to live, and we make sure the patient drinks plenty of fluids. Hydrate!

We know how important eating is, and even if only a taste of vanilla pudding or sips of Ensure, we’ll do almost anything to ensure our loved one has a “meal.”

Whether child or adult, who doesn’t recall the first nibble of a cracker or spoon of chicken noodle soup after you’ve been too sick to eat? Once you started eating, you were on the road to recovery. In the hospital, after my scary leg injury, one of the nurses said I’d be discharged from the hospital only after successfully handling a little drink and a smidgen of food. A successful bite or two meant escaping . . . bring it on!

There’s more. Exercise, and remember no pain, no gain! Get eight good hours of sleep! Don’t have many sweets! Consume five (or four?) daily portions of fruit and vegetables!

All the rules we have, all the habits of life, all the ways to get well, get strong, and get going.

What about turning the patient every two hours?

Is there a point when keeping the body is motion is no longer necessary? After hearing the medical staff in the team meeting briefly discuss it, and after reading a few articles about the value of turning (and because my education and experience is ministry but not health care), I don’t know. However, at some point in caring for a loved one, it may be an important question. Turning or not turning a patient is a choice nurses and doctors may discuss with you. Or you may want to ask them. Whoever starts the conversation, it won’t be an easy subject for any caregiver.

The “habits” that might need to change when a loved one nears life’s end all represent difficult steps for the family. If medical staff suggests your parent or spouse may no longer benefit from drinking and eating, try to be open to their advice. Maybe you’ll end up disagreeing, maybe it’s not time for you or the one you love to stop taking a particular pill or eating three “meals” a day, but at least consider what is being said.

Years of habit and experience rightly cause us to understand: if only he or she will eat a little more or drink a little more, won’t they get better? In most of life, that’s hopefully true.

But in the time of dying, maybe we need to let go of certain habits, choosing instead to hold the hand, whisper words of comfort, and give the nourishment of our presence. Maybe there will come a time when turning the body every two hours is not as important as the stillness of being with the other and sharing the final moments of their journey with them.

(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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Comments

  1. For a while, I tried to get my mother to eat and drink more in her final weeks, to slip in a bite or a sip. I had no idea how long she would still be here, did not ask for any timeline estimate, and knew/felt that I had to just take it as it came. It was touch and go, sometimes surprising as to what she took or refused. Although she had perhaps moderate dementia, she was very much “herself” and was interested in eating what tasted good to her. When we enjoyed eating ice cream on a stick together, it was a good reminder of how we had had fun together, when I was a child and as I was an adult.
    The nurse, a wonderful woman, who connected well with my mother, was concerned about a bed sore so urged me to turn my mother every few hours. It was difficult to turn her both physically and emotionally, as her osteoarthritis was clearly painful.
    I did what I could, trying to balance what I thought I should do and what my instincts told me in terms of not causing more/other discomfort. Later I felt good about having done the best I could at the time. We realized that giving her the regular medication could be causing more trouble as she was hardly eating. It became a matter of giving her regular doses of the hospice medications to make her as comfortable as possible.
    She was on hospice at home for about five weeks. Most of that time included reading aloud, reciting poetry and singing together. The biggest changes came during the final five days. I believe that we helped make the time as comfortable as it could be.
    This is the first time I have been able to revisit the hospice time so fully with equanimity after the last seven months. I appreciate having your shared experience to guide me.

    • Carol:

      I’m glad you’ve been able to “revisit the hospice time” in this way. In a recent grief support group setting, I used this quote from Fred Rogers (Mr. Rogers!):

      “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”

      The more we talk/write/share some of the difficult experiences, they often begin to lose their power to cause self-doubts or second-guessing, and start becoming experiences we understand and learn from. Thanks for your words!

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