What the family wants

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Elizabeth Newman, McKnight's Senior Editor
Elizabeth Newman, McKnight's Senior Editor

In a discussion about palliative care and rehospitalizations at the American College of Health Care Administrators annual meeting over the weekend, one administrator raised a common problem: What do you do when the family is insistent on sending their loved one back to the hospital?

That's not easy, acknowledged presenter Sheila Capitosti. Even when the resident has an advance directive, it's all about long-term care providers “talking about realistic expectations,” with the family, she said.

This is a tough area for long-term care administrators faced with increasing pressure to reduce hospital readmissions. Ethically, we know a family's insistence on sending a resident to the hospital will likely make him or her worse. Now the pressure is on financially: Hospital executives have to find referral sources that won't result in penalties, and many systems will be moving toward bundled payments for the acute- and post-acute provider.

There's no fail-safe way to deal with family members  — illness can bring out the crazy in a person. But one place I suggest starting is examining how we frame illness when talking to family members of residents, and even our friends and coworkers.

To start, journalists  — and I plead guilty to this — who use the words “survivor,” “fought,” or “battle” in stories about illness should be ordered to go cover either a war or a high school, and then rethink any talk about battles. To that end, there's an excellent post by Michael A. Wosnick on KevinMd.com about how Roger Ebert didn't “lose his battle with cancer.”

“It's not the battle part that bothers me — it is the losing part,” Wosnick wrote, noting that it's fine to say cancer patients are fighting.

But I'm not sure I agree, as framing illness as a vicious fight still implies that the hospital patient or long-term care resident should prepare as if he or she is going to war. Maybe that's helpful to some, but I have seen it quickly devolve into how an ill person has to “keep fighting,” or about “how brave” the person is in his or her struggle. When we use those words, notes writer Colleen Shaddox, we are separating ourselves from the ill person. When a resident is inevitably headed toward what I heard one ACHCA attendee call “celestial discharge,” why frame it as a fight he or she can't win?

It is hard to accept a loved one fading away due to dementia, or to see his or her body deteriorating. But one thing I have witnessed in a pediatric intensive care unit and in nursing homes: The patient or resident often is more accepting of his or her impending death than the family member. Sometimes that is because of religious faith, and sometimes it's because they are either old enough or young enough to accept that there is only so much healthcare can do.

To talk with family members about realistic expectations is the beginning of allowing them to find peace, and, hopefully, grace.


Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Emily Mongan.

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