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.

John, 72, who retired in 2003 after 39 years as a high school history teacher first in Madison and then in South Portland, assumed his retirement health plan with Anthem through the Maine Education Association Benefits Trust would cover Gail for what was left of her life.

But less than a month after Gail's admission to Maine Medical Center, Anthem notified her that it would stop covering her care effective March 16, 2012.

And so the battle began.

"They (Anthem) say she appears ready for a lower level of care, but don't say when or where," wrote John in a plea for help to the Maine Education Association Benefits Trust, which contracts with Anthem to provide health coverage for its retirees.

"Maine offers no such facilities for patients on ventilators and there is no place for her to go," he continued. "There was no expression of sympathy or offer to provide help on the part of Anthem. As a Maine company servicing Maine people, I would have expected more."

His plea fell on deaf ears. After reviewing the Kennetts' request that they intervene with Anthem, the MEA Benefits Trust board of trustees informed John last month that they "reluctantly voted to decline further intervention" on the grounds that Anthem has complied with the terms of its plan and the doctor from Pennsylvania (however problematically) ruled against continuing Gail's coverage.

All of which leaves the Kennetts, at perhaps the most vulnerable point in their lives, mired in definitions, disclaimers and denials that all add up to one message: We're done. You're on your own now.

Anthem, backed up by Lamprakos' legally required outside review, says Gail fits the company's definition of "custodial care," meaning it "does not meet the criteria for skilled nursing or skilled rehabilitation services." And since Anthem doesn't cover custodial care, the company says, it's under no obligation to pay.

On the Kennetts' side are Dr. Mette, who as far back as last September cited Maine Medical Center as Gail's "only option," and Paula Banks, a social worker and consultant whose resume includes discharge planner and care coordinator at Maine Medical Center and admissions director and clinical services director at Cedars Healthcare Center in Portland.

"How any doctor, nurse, clinician, hospital administrator, Anthem UM reviewer or layman could think that Gail is at any 'level of care' other than acute is beyond my comprehension," wrote Banks last month in a letter to John Doyle, the Kennetts' attorney.

For starters, noted Banks, the myriad daily tasks needed to keep Gail alive at the hospital -- hooking her up to an "in-exsufflator" four or five times a day to make her cough, for example, or frequent "deep suctioning" to keep her lungs from filling with fluid -- can only be performed by a registered respiratory therapist.

But the bigger problem is that outside of the hospital and two out-of-state facilities (one in Laconia, N.H., the other on Cape Cod) that lie far beyond John's ability to faithfully sit by his wife's side day in and day out, there's simply no place else for Gail to go.

Attached to Banks' letter is a list of 38 skilled nursing facilities she contacted to see if they could handle Gail's care. The vast majority of the recorded responses simply say "cannot meet patient's needs." A few others paint an even bleaker picture.

"Unable to accommodate taking care of patient," replied a representative of St. Andre's Health Care in Biddeford. "I don't know of a facility that could take care of her."

"We can't and do not know of a sister facility that could," echoed Lakewood Continuing Care in Waterville.

The Kennetts' plight, to be sure, reveals a gaping hole in Maine's health care delivery system: If you're on a hospital ventilator and your condition is too complex for home-based care, you stay put or you die.

(In an email last week, Maine Department of Health and Human Services spokesman John Martins said "there have been discussions with Genesis Healthcare and Maine Medical Center regarding a proposed model to provide these services" in a skilled nursing care setting, although many business and regulatory hurdles remain before that becomes a reality.)

But beyond the system's inability to handle Gail, it's hard to fathom the world to which John Kennett awakes each morning:  Throughout all those decades teaching Maine kids, he thought he and his wife would have adequate health coverage in their twilight years; now he finds himself a soon-to-be widower and in debt more than a million dollars.

And the company he once thought would follow him and his wife to their graves now advises in its most recent denial letter to the Kennetts, "Even though benefits are not approved for your continued inpatient stay, we recommend that you consult with your provider to determine the care and/or treatment you may need."

Seriously? That's the best they can do for a woman who's spent her life volunteering for everything from her local schools to Habitat for Humanity and the Alzheimer's Association?

"Based on the policy and the criteria and the review process ... the care is currently custodial," said Anthem spokesman Christopher Dugan last week after looking into Gail's case with the family's permission.

John Kennett had the good sense to purchase long-term care insurance to supplement his and Gail's Anthem health policy, but the $220 per day currently paid to Maine Medical Center by MetLife (which has no problem recognizing the necessity of her treatment) amounts to less than 10 percent of her daily hospital bill.

And while there's always the chance that seven-figure outstanding balance ultimately will be written off to "bad debt" or "charity care" by Maine Medical Center once the Kennetts' last-ditch appeals (and, if necessary, federal lawsuit) run their course, that's small comfort as John kisses his wife around midnight each night and heads home to their empty house in Scarborough.

"We have been dealing so much with (the insurance dispute) that we can't focus here, where we should, to make sure Mom's comfortable and enjoy the time we have left," said the Kennetts' daughter, Allison Kennett Conti, motioning toward her ever-attentive mother last week. "We're just so focused on emails, phone calls, red tape and bureaucracy."

Late last summer, before Anthem finally agreed to cover Gail's hospital care until Sept. 22 but not one day more, the Kennett family requested a meeting of everyone -- the doctors, the nurses, the administrators, the social workers, the insurance company -- to try to find a way out of what Anthem's outside experts so accurately call her "dilemma."

"We had the meeting at the hospital and Anthem was aware of the meeting, that they were invited to come and be part of it," recalled John. "But they didn't show up."

Must have been too "problematic."

Bill Nemitz can be contacted at 791-6323 or at:

bnemitz@pressherald.com

 

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