Speak Up!

It's always nice and easy to share with "Friends" and others. Or is it . . .?

It’s always nice and easy to share with “Friends” and others. Or is it . . .?

Instead of visiting homes to provide care, one of our hospice nurses is assigned to patients in skilled nursing facilities (SNF). SNFs are also known as convalescent hospitals, nursing homes or the-place-no-one-wants-to-be. Sometimes Keon—let’s give that name to our friendly nurse—will also tend to a patient at an ALF, or Assisted Living Facility.

Mostly, though, it’s a SNF. The patients aren’t doing well. Even before they neared death, they likely had other injuries or illnesses that required serious, ongoing medical attention. While no longer able to stay in a hospital, they were far too serious to consider going home.

But kindly Keon, either by mistake and design, was assigned several patients at home.

Just before the start of a team meeting, Keon joked with other staff and said, “Today I had a patient talk back to me and hardly knew what to do.”

Whoa! A patient spoke! The majority of Keon’s SNF patients were too ill to speak. But in a home, with family and friends helping, the patient will happily give feedback. Or angrily give feedback. The patient (and you and I) can choose from a long list of feelings for answering questions or sharing opinions:  beyond happy and angry, there’s sad, scared, confused, offended, irked, aroused, two-faced, pleasant and . . . oh, how endless is the list. Endless and complex.

A patient grimaced with every turn on the bed, but he muttered, “I feel great today.”

Maybe Keon will ask a spouse, also the patient’s caregiver, how she’s doing. With no sleep in two days, and barely keeping her eyes open, she replied, “I feel great today.”

We lie. We tell the truth. And we give mixed messages, exaggerate our hurt or hide our shame. Often the worst—whether from a patient with a serious illness or a friend sharing coffee on a warm spring day—is that nothing truthful is said. We clever humans disguise our real feelings.

One of the things I admire about hospice care is the staff intentionally seeks to include the patient and family in decision-making. What do you want? What do you need? One of things I appreciate about supporting bereaved families after a loved one dies is asking:  how are you doing, how can we help, what do you need? One of the things I look forward to when spending time with my family and friends—whether sipping coffee in a cozy café or helping during a crisis—is asking:  how are you doing or saying I will help in any way I can.

Let’s be blunt. Some of us will arrive at a point where we can’t speak for ourselves. If that happens, I hope a nurse like Keon will sit by your bed and, in silence and with respect, care for you, tend to your needs and try to make sure you’re as comfortable as possible. But everyone, on most days and in most moments, has the power to speak. To share the truth of how they feel or what they need. You’ll have the opportunity to tell good-hearted Keon what you need. You’ll have an opportunity to honestly tell your spouse, parent, child and friends what you need.

If you speak up . . .

(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.)

Image from here.

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Comments

  1. I was a Hospice Chaplain in Home Care for many years.
    It was a gift to me to be present. Period. The patients taught me that. In truth, the patients taught me everything important about being a Hospice Chaplain.
    Especially the Athiests. They taught me how to be present, loving and supportive without the “crutch” of religion.
    The best experience of my life.

    • How right you are, Susan . . . “a gift to be present.” Atheist, agnostic, Christian or Muslim, in hospice–at the time of death–the boundaries become meaningless. I’ll forever be inspired by a hospice social worker’s comment years ago as he went out to see patients: I wonder what I’ll learn today? The ones dying, and the ones grieving, often teach us what matters most . . .

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