July 14, 2013

Bill Nemitz: ALS sufferer, husband in health care limbo

Life can't get much worse for Gail Kennett.

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Gail Kennett, now in the late stages of Lou Gehrig’s disease, has been a critical-care patient at Maine Medical Center since February 2012.

Courtesy photo

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She's in the final stages of amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.

She's been a critical-care patient at Maine Medical Center in Portland since February 2012.

And her condition? Well, let's turn to Dr. Stephen Mette, chief of the hospital's critical care unit, for that one.

"She remains completely dependent on mechanical ventilation to sustain her life," wrote Mette in an update last month. "There are no attempts to wean her from mechanical ventilation and indeed she would not survive this given that she has essentially no respiratory muscle strength."

He continued, "She no longer has any motor function of her arms and hands. She uses a nurse call device triggered by small movement of her head. Communication has become more difficult over the past month. The care team now uses a system of eye deflection for yes or no answers only."

Beyond her life-or-death reliance on the ventilator, noted Mette, "Mrs. Kennett continues to be completely dependent for all aspects of her care including nutrition through a feeding tube, bathing and hygiene, positioning, tracheal suctioning. She continues to receive scheduled narcotics for control of pain and discomfort, anti-anxiety medications ..."

Heard enough?

So has Anthem Blue Cross and Blue Shield, which last September stopped paying for Kennett's care because, in the eyes of the health insurance company, none of the above is "medically necessary."

Rather, Anthem Utilization Management Services Inc. has decided, Gail's care is "custodial." And they don't cover that.

"It's scary," said John Kennett, Gail's husband of 46 years, as his wife, who can no longer speak, listened intently from her hospital bed last week.

He wasn't just talking about Gail's condition. Also keeping John (and Gail) awake at night is an out-of-pocket medical bill that recently passed the $1 million mark.

"I bring it up and (hospital personnel) say, 'Don't worry about it, don't worry about it,"' said John Kennett. "But I know that every day she's here, it's $3,300. And it starts to add up in your head."

Now for the truly maddening part: While Anthem argues that Gail could receive the same care for a lot less money in a skilled nursing facility, her family has contacted 38 such facilities throughout southern and central Maine and every one has said no -- they're not equipped to handle needs as complex as hers.

That, conceded an outside expert from Pennsylvania who backs Anthem's decision to stop footing Gail's ever-escalating hospital bill, "presents a dilemma."

"The lack of a SNF (skilled nursing facility) ventilator unit within reasonable proximity to the patient's home, and the apparent inability to arrange home mechanical ventilation is problematic," wrote Dr. James Lamprakos of IMX Medical Management Services in an "independent external review" of Gail's case last September.

"Nonetheless," Lamprakos continued, "the denial of inpatient care ... to a stable patient with ALS on mechanical ventilation is upheld."

It all started back in 2009, when Gail, now 69, noticed during one of her and John's regular walks around the Maine Mall that her foot kept slapping uncontrollably on the floor as she walked.

The relentless progression of ALS followed: first the walker, then the wheelchair, then the loss of hand and arm function -- and on Feb. 23, 2012, respiratory failure that landed Gail in a hospital bed in all likelihood for the rest of her life.

(Continued on page 2)

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