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.
“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.”
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.”
Gail Kennett has a living will. It leaves the decision-making to her husband should she be unable to make a rational decision herself, but it doesn’t anticipate a scenario where she’s fully alert and aware of her situation and can communicate what she wants (and what she doesn’t).
As for the decision to go on the ventilator, the Kennetts didn’t have a lot of time when Gail arrived at Maine Medical Center’s emergency room that evening 17 months ago with what turned out to be pneumonia.
“She was put on the spot there in the ER: ‘You’re going to die or you’re going to be put on this ventilator.’ She chose the ventilator,” recalled Conti. “At that point, none of us knew there wasn’t any facility where she could be taken care of. None of us knew we weren’t going to be able to bring her home. So we just had no idea that it was going to become a situation like this.”
This is, of course, not the first time the desire (or is it instinct?) to live runs counter to the widespread perception that life can become, at some point, no longer worth living.
Consider this excerpt from a 1991 report by the American Medical Association’s Council on Ethical and Judicial Affairs titled “Decisions Near the End of Life.”
“There is no such thing as a ‘natural’ death. Somewhere along the way for just about every patient, death is forestalled by human choice and human action, or death is allowed to occur by human choice. Life-support techniques make death a matter of human choice and hence a matter that provokes ethical concern.”
Indeed. Conti often finds herself wondering if her mother wants to stick around until the family’s financial crisis is resolved rather than die knowing that her illness left her husband of 46 years not only emotionally devastated, but financially ruined as well.
Even if staying alive compounds the financial hardship?
“That’s a good question,” replied Conti. “I’m sure it goes through her mind. It definitely goes through my mind — and I feel guilty thinking of it.”
There is, of course, no universally right or wrong answer to the Kennetts’ predicament — which is why I chose last week to limit the story to their battle with Anthem and leave the life-and-death conundrum to the privacy of the family.
Yet, as still another reader wrote: “This article reflects a real tragedy that will grow as the Baby Boomer population grows (older). And it misses a growing and more significant issue besides cost. And that is HOW TO DIE.”
But what if someone, no matter how dire her dependence, is still more concerned with how to live? Is Gail Kennett under obligation to anyone other than herself and her family to make that transition from survival to what several readers referred to as a “dignified death”?
“I think my dad has a lot to do with that,” said Conti, who spoke for the family last week at John’s request. “She looks forward to his (daily) visits, they watch their shows together, he reads to her. They get cards from family and friends that they look forward to. That’s kind of what keeps her going.”
Sooner or later, that will change. Gail’s failing immune system will be overwhelmed by one infection or another, she’ll likely slip into a coma and her family will decide what to do now that, as Conti put it, “she’s no longer conscious and that part of the equation is gone.”
But she’s not there yet. And much as many people she’s never met think she’s the victim of her own poor planning or mildly chastise the Kennetts for not considering the bigger picture here, Gail Kennett is simply not prepared to die.
“Any day, that could change,” conceded Conti. “Tomorrow we might ask her and she might say, ‘I’ve had enough.’ But that’s her prerogative.”
Bill Nemitz can be contacted at 791-6323 or at: