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Life Health > Long-Term Care Planning

LTCI Watch: Accidental caregivers

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Over the past few weeks, I’ve discovered a strange, creepy gap in the U.S. health care system: A gap in support systems for people who suddenly get called to provide chronic care for others out of the blue.

Most of us have at least had some kind of dimly remembered grade school health class on emergency care. We know that you should put pressure on a bleeding wound, keep someone who seems to be in shock (for a reason other than heat stroke) warm, and compress the chest of someone who seems to be in cardiac arrest to the rhythm of the Bee Gees’.

But how do we give an EpiPen injection to someone suffering from a severe allergic reaction to peanuts? How do we look after the aging, disoriented father of a friend who needs a break? And how do we safely put scary powerful antibiotics in the PICC line of a stubborn 14-year-old girl who needs scary powerful antibiotics for six weeks?

A PICC line — a peripherally inserted central catheter — is a tube inserted near a patient’s elbow and threaded into a large vein that leads to the patient’s heart.

A PICC line is great for pumping the scary antibiotics through the bloodstream of a girl (many, many details changed her to protect privacy) who has a bad infection, but also potentially great at pumping horrible killer germs or air bubbles through the girl’s body.

In the case I’m thinking of, the girl’s father puts in the antibiotics most of the time, but sometimes he needs someone to fill in when he’s at work. What if he asked you to fill in?

It’s hard to find clear, detailed, well-organized information about topics like PICC lines on the Web or in printed medical guides for lay people.

What if the tender of the PICC line has basic, general questions, such as, “How big of a bubble of air in the PICC line is a dangerous bubble of air, and what’s too small to worry about?”

Or, “When the girl says her doctor told her it was OK for her to leave the house and go roller skating with friends, could that possibly be true?”

Lay friends and neighbors who are suddenly acting as caregivers may not have the privacy paperwork needed to ask the patient’s official caregivers for help.

If the random lay people try, for example, calling their own health insurance company nurse lines for advice, the nurses are likely to shoo them away.

But it hit me, as I was, frankly, weaseling out of having anything to do with the PICC line, that, at a time when the population is aging, the country is trying to minimize expenditures on formal care, and caregivers are desperate for time to live their lives, a lot of us may suddenly find ourselves staring at tiny bubbles of air in PICC lines without having any obvious way to weasel out of taking responsibility for the PICC lines. 

The country somehow needs to have systems that patients and caregivers can use to make basic information available to providers of very temporary, very informal respite care.

Maybe the kinds of care coordinators who work with private long-term care insurers could start by working with health plan nurse lines to make sure that the ordinary plan nurse lines can answer basic chronic care questions as well as questions about the callers’ own health.

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