July 22, 2013

Bill Nemitz: Patient's live-or-die decision still her own

The family of an ALS sufferer with soaring medical bills responds to readers who challenge her choice to live.

Telling one's story in public often has its consequences -- not the least being that many people out there aren't shy about chiming in on what you did right or what, in their opinion, you did wrong. And chime in people have in the case of Gail Kennett, a 69-year-old woman from Scarborough with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's disease.

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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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"The availability of Health Care Money is 'limited' not 'infinite,'" wrote one reader, identifying herself as a registered nurse, in an email to me last week. "It must be appropriately 'rationed' ... given to those who WILL benefit from care and withheld from those that will NOT benefit."

Let's recap:

Gail Kennett has been on a ventilator at Maine Medical Center in Portland since February of 2012. In a column last Sunday, I wrote about a Catch-22 she, her husband, John, and the rest of the Kennett family face as Gail's body deserts her while her mind remains fully lucid and very much alive.

Anthem Blue Cross & Blue Shield, John and Gail's insurance carrier through the Maine Education Association Benefits Trust, refused as of last September to pay her medical bills because the company considers her care "custodial," which is not covered under the Kennetts' plan. Recently, the Kennetts' out-of-pocket hospital bill passed the $1 million mark -- and it continues to climb to the tune of more than $3,000 per day.

The Kennetts' problem: Outside of Maine Medical Center, there are no lower-tier facilities willing to accept Gail as a patient. In fact, 38 skilled nursing facilities contacted on the family's behalf have said they are not equipped to meet her needs.

Home care is also out of the question because, as Gail's daughter, Allison Kennett Conti, explained last week, John Kennett has all he can do to sit by his wife's side at the hospital -- let alone administer the daily deep suctioning and other procedures that prevent Gail from essentially drowning in her own body fluids.

"We've been told time and time again by the hospital that (home care) would be an unsafe situation," said Conti. "With which we agree."

The column generated many responses, some sympathetic to the Kennetts' dilemma, others not so much. It's that second group that makes Gail's story, with her and her family's permission, worth a second look today.

"If Mrs. Kennett is able to answer affirmatively, 'Yes' or 'No' using her eyes, has anyone asked whether she wants to stay on life support? This is the topic that needs to be discussed," wrote one reader.

Yes, Gail's family has asked her that question. And yes, hard as it may be for some to fathom, she wants to stay alive.

"She feels like removing the ventilator is tantamount to suicide," said Conti. "She wants every minute with my dad and every minute with her family that's given."

If that interpretation of suicide sounds extreme, her daughter said, Gail may have good reason. Eighteen years ago, her 23-year-old son, Timothy, shot himself to death for reasons that to this day aren't clear. An up-and-coming electrical engineer with IBM, he offered no explanation in the brief note he left behind and exhibited no warning signs beforehand that he was experiencing a serious emotional crisis.

"My mother never recovered from that," said Conti. "She was really devastated by it."

Advised another reader: "Hospitals should not be used as living morgues. The general public needs to come to grips with the fact that they will not live forever. They need to be encouraged to make living wills and think hard before hooking up a loved one or themselves to a machine."

(Continued on page 2)

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