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!
