Monday Morning Bastards Redux

“I’m listening to this Zen radio station,” said Elizabeth, who was presided over a completely empty gift shop, unless a yakking parrot and a close -to-microscopic dog were enough to compete against the human dredges of three cruise ships that normally fill the shop. “It’s nice to reduce the stress, sometimes….”

So I contemplated it: I had taken a three or four-mile walk by the sea, listened to forty-five minutes of rapturous music by Heinrich Ignaz Franz von Biber (see below), did I have any right to question how seriously stressed Elizabeth might be? After all, we could both still walk, which was something, since Sunshine is still limping around—though also still working. Oh, and how long has this been going on? Well, it was two-weeks old when I wrote about it on October 16, 2014: We’re going on four or five months now, and Sunshine has received no treatment for his knee, but no matter! He now has another extended family of caring, although bureaucratic friends!

“Hey, they told me quietly at the doctor’s office to go to the procurer people,” Sunshine told me, and I knew what he meant. The Oficina de la Procuradora del Paciente is the Ombudsman for the patient—and so for the doctor’s office to be quietly urging him to turn them in is a fairly radical move.

“First they say it’s one paper and that the insurance company needs to provide it. Then the insurance company says the doctor’s office lost the paper, and for reasons of auditing they cannot provide a duplicate copy. So I’m going back and forth, and now they’re getting pissed at me because instead of going to their office, when the pain gets bad, I’m going to the emergency room. And that’s causing them real money….”

OK—that may not be actually what’s going on, but does it matter? Of course not, because whatever the legal or moral issues involved, from a financial point of view, it’s a disaster. Who knows? If the situation continues, Sunshine’s knee may worsen to the point of needing surgery—and how expensive is that? And how is Sunshine going to pay the bills if he’s in bed, recovering from knee surgery? He’s already working on his feet when he shouldn’t be.

So he’s asked me—can I help him? And I told him—stupidly—that I couldn’t, since I had to be writing this. Right—so my writing is more important than his knee? Hmmmm.

Why do I do this, I often wonder? Does a blogger make any difference? Is anyone out there? Are the shadowy figures who control the international global economy and governments quivering as they read my incendiary words? Or is it just me, a voice among millions of others—speaking whatever truth mine is to power? At any rate, here is just one sentence from the New York Times, enough to make me feel that my own Monday morning has just gotten soaked by a heavy rain of stress:

In several states, including New York, Wisconsin, Minnesota and New Hampshire, legislatures have banned the withdrawal of oral nutrition or hydration at all, no matter what a directive or a proxy says.

OK—for anyone who doesn’t know the story: My mother, at age 89, was barely able to walk, see, or do the things she had loved all her life. So, though she may or may not have had the beginning of Alzheimer’s, she stopped eating and drinking, with the full support of her doctor and her family. She died peacefully at home after eleven relatively comfortable days.

She had made her decision, and so perhaps even today she could have done what she did: Announce to her doctor that she was “done,” ready to go, happy to leave the party as it was dying down. More, that had always been her wish, which was why she had written (with my assistance, since I was an RN) a complex health care directive stating under what circumstances she wished fluids and food to be withheld, until she met her end. So is it the case that today she could make the decision to stop eating and drinking, but can no longer direct someone else to make that decision for her? What if my mother had been hit by a truck while going to the doctor to arrange to stop eating and drinking, and what if that collision had resulted in her being in a vegetative state? Would she have been out of luck? Oh, and if the blood pressure is insufficiently soaring, you might contemplate this sentence, from the same Times article:

“We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives.

Yeah? Well, if I were in a “fragile, vulnerable and terrible situation,”—and why do I think end-stage Alzheimer’s might be a very good example of the above—I’d want to do something. And no, I wouldn’t appreciate the Catholic Church deciding on what I was going to do.

Look—it’s abuse in Guantanamo; it’s abuse in Madison, Wisconsin. Anybody who is force-feeding a person who has refused nutrition or directed that a health proxy refuse nutrition on his behalf is committing torture. And nothing—not national security, not the church’s teaching on the sanctity of human life—can justify torture.

Think it can’t get worse? Oh, but it does, because the same New York Times, a week later, reports the interesting news. I bring you a screen shot of the headline:

OK—at this point the Biber Effect had been seriously diluted, but could I not read the article? Of course not, so now I read that Dino Palermo, in his eighties and visiting every day his PhD-educated wife in the Mary Manning Walsh Nursing Home—a Catholic facility in Manhattan—had arrived one day to find a six page legal document on his wife’s bed. Why? The facility claimed that Palermo owed money, and they were asking the state to assign guardianship to collect. In short, the nursing home would take over Mrs. Palermo’s finances, and determine whom to pay.

It didn’t happen, but it also didn’t make Mr. Palermo’s life—presumably not the easiest, since now he had to take on a legal case AND take care of his wife—any happier. Here’s the New York Times again:

Mr. Palermo, 82, was devastated by the petition, brought in the name of Sister Sean William, the Carmelite nun who is the executive director of Mary Manning Walsh. “It’s like a hell,” he said last fall, speaking in the cadences of the southern Italian village where he grew up in poverty in a family of eight. “Never in my life I was sued for anything. I just want to take care of my wife.”

Is it just me, or is the world more than ordinarily deranged nowadays, when a Carmelite nun, for God’s sake, is suing an 80-year old for control of his wife’s money?

Well, The New York Times has more resources than this blog, so they could do what I cannot, but they were good enough to tell me about it. Because it seems that the statistics are hard to come by about guardianship—hmm, wonder why that should be—but the Times got Hunter University to look into the matter. And here’s what they found:

In a random, anonymized sample of 700 guardianship cases filed in Manhattan over a decade, Hunter College researchers found more than 12 percent were brought by nursing homes.

In case you hadn’t noticed, we’re under attack here—we people who want to make our own decisions, live our own lives, and do so without the government either mandating what we can do or spying on us to make sure we’re not doing something else. Is it any coincidence that the first day of our new congress, they got right down to dictating what a woman can or cannot do to her body? Here, for a change, is Huffington Post:

Emboldened by a new Senate majority, Republicans in Congress introduced five abortion restrictions in the first three days of the new legislative session that would severely limit women's access to the procedure.

It’s nothing short of breath-taking—even worse than a fifty-year history of three-pack-a-day smoking—the callousness of the Catholic Church. Though it has to be admired: Who else could so deftly rig the system? Dino’s wife has no power to stop being a vegetable, no power to direct anyone to withhold fluids. And then the same “church” that made that decision for her is now trying to get hold of her purse strings.

First they make the morality.

Then they make the money off it.

    

Medical Sadism

I read it and immediately thought of Thomas Moore. No, not the Irish poet who wrote the lyrics to the Minstrel Boy, and not Thomas More, Catholic martyr and saint. No, the American author of Care of the Soul, who, coincidentally, spent several years of his life in a seminary, with a view to becoming a priest.

Care of the Soul was followed by a number of other very good books; a little known and early book was entitled Dark Eros, and it focused on the nature of sadism. And one its theses is that there is a dark side to many of the professions that are ostensibly filled with light.

Teaching is one—a good teacher is going to have to say things like this:

This work is shoddy. You have not done enough research, you have not buttressed your arguments, you have failed to provide footnotes for material that you quoted. Take it back and bring it to me next Friday, or you’ll get an F in the course.

It’s not pretty, of course, but it’s necessary. In religion, too, there is sadism. Remember the story of the monk who was combatting acedia, the noonday demon of sloth and spiritual laziness? He goes to his cell at night and discovers a demon in his room, and runs to his advisor. The monk refuses to help him, and orders him to his bed.

There’s a dark side to medicine as well. I recently read a list of the ten most psychopathic professions, and guess—beyond of course CEOs—who made the list? Surgeons. Regular doctors score on the 10 most caring list; the guy who is willing to take an electric saw and attack your cranium had better be a psychopath.

Moore’s point—if I understood it—is that there is a shadow, much as Jung argued. And that it is better to know it, meet it, understand it, and learn when and how to use it than to deny it, fear it, negate it, and ultimately be consumed by it.

(It’s true, by the way, on a national level as well. Wouldn’t it have been better if we had just said, “hey, we want their oil!” and invaded wherever we wanted? Couldn’t we at least have had a debate about that, instead of the “weapons of mass destruction?” As it is, there’s a great bumper sticker in the Middle East that reads: “Give Us Your Oil or We’ll Bring You Democracy!” With the stars and stripes on either side!)

And so I read the attachment to the email from an ethicist whom I have never met who was meeting with a woman, also whom I have never met. I have spoken with her, however, over the phone, and she related the story of her husband that was essentially similar to my mother’s. Her husband, like my mother, had or might have had Alzheimer’s. Both decided to stop drinking and eating until they died (medically termed VSED—Voluntarily Stopping Eating and Drinking). The difference? My mother had the care of an extraordinary group of hospice nurses / physical therapists / social workers—an amazing team. Jane’s husband was refused service from hospice; now, some months after his death, she wants to know why. And so she met with Dick (as you will have guessed, Dick and Jane are not their real names…) the ethicist for the hospice, to see where the ball got dropped.

Dick in turn wrote to me, and I take the liberty of quoting from his email: 

We are attempting to address two questions. Does a person suffering with Alzheimer's but without a less than 6 month prognosis qualify as a hospice candidate solely on the grounds that he or she wishes to utilize VSED to bring their life to a close? The other question is whether or not a person who utilizes VSED and, when the person reaches a point where hospice or palliative care would be an option, qualify for hospice care?

Jane's husband did not qualify because he did not have a less than 6 month prognosis nor was his disease a 7 or above of the FAST Scale (I attached it for your information). If he had had either a less than 6 month prognosis or a greater than 7a FAST Scale score, he would have been accepted to hospice.

In addition, because he did not have a less than 6-month prognosis, he did not qualify for the provisions of the Washington State Death with Dignity Act.

I have friends with degenerative neurological diseases such as Parkinson's and Huntington's and I can very well understand and appreciate the desire to control the timing of one's death. I also know that many in the healthcare field are grappling with what is sometimes termed as "rational suicide" or "pre-emptive suicide." I heard a presentation on this at an ethics convention in Atlanta a couple weeks ago.  

As you know, Jane is a strong advocate for VSED. I can appreciate and respect her passion. That said, I have concerns. How do we, as a society, insure that the vulnerable are protected from undue coercion to hasten the end of their lives? Should hospice become the place where those suffering with degenerative neurological disease come to end their life via VSED? If it is, what are the guidelines to be? If it isn't, where is the appropriate place?

I have no answers, a few concerns, and questions about how we prepare for an ever increasing population of folks with these diseases.

That's enough for now.

I look forward to your thoughts and comments.

Clearly a sincere and honest guy. But how to respond?

Well, in my mother’s case, she had had an advanced health care directive (“living will”) for a decade and a half; in that document she had written something like, “if euthanasia—which I would much prefer—is not available when I am no longer able to live a life of dignity, I direct my health agent to withhold food and fluids until I die.”

As it happened, she didn’t need her health agent—read “Marc”—she told it directly to the doctor, whose own mother had done exactly the same thing. And I and my eldest brother were with her, and we were both sobbing. The doctor handed me the Kleenex, told me, “I’ve been in that chair many times,” and ordered hospice care. Why? Because if my mother did indeed stop drinking and eating, she was definitely within six months of her death. And that was and is the standard definition of hospice care.

That made sense to me. Curiously, no one else questioned the logic either, though all of the hospice people said they had never seen it done. “I’ve seen people stop eating and drinking because of a terminal disease—cancer or Huntington’s—but never in essentially good health.”

(I should state that my mother was 89, had severe macular degeneration, limited mobility, and acute deafness. She had been a fine poet and could no longer write or read. How much rice does the Chinaman have to eat?)

Of all of the people who have heard the story of my mother’s death, only four have expressed disapproval. On what grounds? Religious: only God can take a life. Obviously, I’m not a theologian, and cannot address this question. My mother, however, was an atheist—was she to be denied help because of someone else’s religious views? If so, were any public funds being given to that organization? Any Medicare reimbursement, perhaps?

In their book—which I read in the month before my mother’s death, so my memory is shaky (it was not an easy time)—To Die Well, authors Sidney Wanzer and Joseph Glenmullen argue that most if not all of the major religions are comfortable with a person choosing to stop eating and drinking, and that it is not considered suicide. I think this is Jesuitry, but I also don’t care. The point is that it was her body, her decision, and if that’s what she wanted to do, I supported it.

That last sentence, to me, is key to the whole affair. But what was this mention of a FAST rating? And why, having been a nurse for many years, had I not heard of it? What had the boys cooked up now? I give you the attached FAST scale here:

FAST Scale (Functional Assessment Stage)
Stage                                       Characteristics
1.	Normal Aging.  No difficulties, either subjectively or objectively
2.	Possible Mild Cognitive Impairment; complains of forgetting locations of objects.  Subjective word finding difficulties
3	Mild Cognitive Impairment: decreased job functioning evident to co-workers; difficulty in traveling to new locations; decreased organizational capacity.
4.	Mild Dementia: decreased ability to perform complex tasks (e.g., planning dinner for guests); handling personal finances (forgetting to pay bills); difficulty marketing, etc.
5.	Moderate Dementia: requires assistance tin choosing proper clothing to wear for the day, season, or occasion.
6.	Moderately Severe Dementia
6a	Difficulty putting clothing on properly without assistance
6b	Unable to bathe properly, (e.g., difficulty adjusting bath water temperature) occasionally or more frequently over the past weeks
6c	Inability to handle mechanics of toileting (e.g., forgetting to flush, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks
6d	Urinary incontinence, occasional or more frequent
6e	Fecal incontinence, occasional or more frequently over the past week
7	Severe Dementia
7a	Ability to speak limited to about half a dozen words in an average day
7b	Intelligible vocabulary limited to a single word in an average day
7c	Non-ambulatory (unable to walk without assistance / non-purposeful ambulation)
7d	Unable to sit up independently
7e	Unable to smile
7f	Unable to hold head up

Another facet of sadism is to label people, and we did it frequently in those days when I worked as a nurse. “We got an MI coming in!” somebody would shout in the emergency room—and we understood, myocardial infarction. But our MI was somebody’s husband of 50 years, three kids’ father, 8 grandchildren’s…you get the picture.

And so I scanned the list above and realized: my mother or Jane’s husband would have had to be unable to bathe, put on clothes, and shit and piss in their pants? Oh, and only be able to speak half a dozen words in a single day—this (at least in the case of my mother) from a woman who could quote reams of Shakespeare—before anyone in the medical profession could put her out of her misery?

“BASTARDS!” I exploded. And got up and raged around the house. Because even though it’s been three years, those days of scrambling to find a way out for my mother, of fighting the medical system, of fighting my own brother who refused to let her kill herself in any other way—those were days of terror. Those were days when the level of desperation had risen or sunk—don’t know which—to the point where I would have taken a gun and shot my mother, as my father would have shot an old, suffering dog in his North Dakota Great Depression youth. Those were days when the idea of seeing my rotting mother sitting in a shit-filled diaper with drool hanging down her mouth in a wheelchair looking aimlessly at me in some nursing home, where cheerful aides out of high school are calling her “Fran” (she hated that) and tying her hands because she’s trying to get out of the wheelchair….

Dick, the ethicist, isn’t a bastard, of course. But I think the medical system is going to have to get to the point—finally, after so many years—of realizing a simple point.

“Who’s in charge of patient care,” a doctor once asked me in an interview. I knew what he wanted—I was coming across as an uppity nurse.

“The patient,” I said.

Wasn’t the response he expected, but he had the grace to admit I was right (I also didn’t get the job….)

My mother’s doctor made it clear—she would do this for an 89-year old, frail, blind, deaf woman confronting Alzheimer’s. But a sixteen-year old, upset because she had broken up with the only guy she would ever, ever, EVER love? No way.

Usually, like Dick, I have more questions than answers. But not today. Copy and paste from the email: “Should hospice become the place where those suffering with degenerative neurological disease come to end their life via VSED?”

Yes.

Dammit!