Το σχεδόν φιλί...

Μια μικρή ιστορία, που απασχολεί συχνά εμάς τους μικρούς ιατρούς...

Μια μικρή ιστορία όμως, που καταπιάνεται με θέματα μεγάλα... Με θέματα που ίσως σταμάτησαν να καταπιάνονται οι μεγάλοι ιατροί...

In the darkened room, gray shadows fell across Mrs. R’s face,
and she wearily glanced up at me. I gently stroked her hand,
but she did not seem to notice. I felt an urge to give her a gentle
kiss on the cheek. It seemed the only way to restore part of what
she had irreparably lost.

In general, I do not think kissing patients is on the top 10 list
of items we teach our students. I recall during my medical school
days observing a hale, hearty gastroenterologist lifting up his
little constipated patient and planting kisses on her cheek, under
the approving eye of her crooning parents. Once I moved out
of the realm of pediatrics and into the adult world of infectious
diseases, kisses were banished forever. In the era of resistant
bacteria, hugs were pretty much out, too. But, perhaps, there are
exceptions. I like Mrs. R.

Mrs. R was one of my primary care patients. She was well
into her 80s when I first met her: still a handsome woman
with a distinctive profile, a strong chin, and a peculiar dignity,
fiercely independent in her ladylike manner. She was a petite
woman, always slender but in her later years had become quite
frail. She had been widowed years ago and had no children. She
did have a nephew who lived over in the next state, an internist
who took as good care of her as he could from miles
and miles away.

Mrs. R began to have episodes of acute shortness of
breath and landed in the hospital, where she was subsequently
diagnosed with angina. Of course, she was offered a cardiac
catheterization.

Mrs. R would have none of that. She knew perfectly well
what she wanted: she had lived a good full life and was not
interested in spending more time in the hospital. She repeated,
clearly and unequivocally, that she was not going for any invasive
tests. If it was her time to go to the great beyond, so be it. She
carefully had her health care proxy and advance directives
legalized and notarized, and was confident that her wishes had
been made clear. I agreed that her approach was reasonable. On
this hospitalization, I duly wrote the ‘‘Do Not Resuscitate’’
(DNR) order in the chart and looked to discharge her.
We tried to set her up with a home health aide. She reluctantly
agreed, then, as soon as she met the said person, promptly
threw her out in her firm, yet genteel manner. She decided that
she would continue to live her life strictly on her own terms, with
no outside interference from anyone. I discussed the situation
with her nephew.

‘‘She threw the last two aides out of the house, too,’’ he said,
partly in resignation, and perhaps partly in admiration.
Mrs. R certainly did know what she wanted. The question
was if the medical community would allow her to live, and die,
as she wished. In retrospect, the odds were not in her favor. As I am in a
5-physician group, there was only a 20% chance of my being on
call when Mrs. R was admitted. In my group, there are 2 physicians,
including myself, who routinely ask a newly admitted
patient if they have an advance directive. The other 3 usually
do not ask unless the patient is obviously breathing their last.
Although I believe this attitude is shortsighted, I cannot fault
my partners too much because this is a result of our training in
the American system. We were trained to diagnose and cure
disease, and falling short of that makes us feel uncomfortable,
as if we have not done our job. In fact, it was not until my
fellowship that one of my professors told me that our overriding
priority should always be to make the patient feel better. My
professor was clearly in the minority.

And so it is that many physicians avoid addressing the issue
of advance directive. The very term DNR carries with it a very
negative connotation. Nurses not uncommonly recoil and start
speaking in hushed whispers when they hear a patient has been
made DNR as if we are shunning the patient and giving up
on them. The new expression ‘‘Allow Natural Death,’’ which I
fervently hope will gain traction in New Jersey, is more accurate
and more positive in outlook. It implies allowing nature
to take its course rather than the implication that we are not
doing what we are supposed to do.

We physicians as a group often do not know what to do
with patients such as Mrs. R, who prefer a less aggressive approach.
So as not to have blame assigned to them, residents
will routinely write, ‘‘Patient refused cardiac catheterizationI.’’
They put the burden on the patient, implicitly blaming the
patient for not following standard procedure. It should not be
that way. Deciding whether or not to do a potentially harmful
test should be the patient and physician working together toward
a common, mutually understood goal.

As Mrs. R deteriorated, her admissions inevitably became
more frequent. Each time Mrs. R was admitted by one of my
partners, I had to remind my entire group (and more forcibly,
the cardiologist) that she did not want an aggressive workup
and wanted to be ‘‘DNR.’’ It was on her final admission, however,
where the impersonal, unforgiving nature of the medical
system was exposed.

On Mrs. R’s last admission, she came to the emergency
department (ED) early in the evening, breathing 40 times per
minute. She did not respond to furosemide. Her nephew talked
to the ED physician over the telephone and said clearly that
Mrs. R had a living will and did not want to be resuscitated.
At the ED physician’s request, Mrs. R’s nephew faxed the living
will. As her unequivocally stated last wishes were arriving
on the fax machine in the back of the ED, the ED physician,
not bothering to wait for this confirmation of the DNR, intubated
Mrs. R. And that is how Mrs. R became a victim of the
system. Once the machine is set in motion, it is not so easy
to stop.

Unfortunately, the medical machine’s default mode is
always to do more. It does not involve listening carefully to
the patient, and it does not particularly pay heed to the Hippocratic
oath’s directive to ‘‘do no harm.’’ The default mode lacks
intelligence, and, most importantly, it lacks common sense. I regret to say I was not on call that night. If I had been, I would like to say I would have driven back to the hospital, put her on
a morphine drip, and had her extubated. She would have passed
away peacefully in the night.

However, this was not to be her fate. She was instead
taken upstairs and continued to be poked, prodded, and stuck,
half-living and half-dead in the crazy artificial twilight of the
intensive care unit (ICU). After several frightening and demeaning
days on the ventilator, she was finally terminally extubated.
In ICU jargon, however, she ‘‘flew,’’ which in her case meant
she was transferred in very fragile condition to the regular floor,
with precious little chance of making a full recovery.
For a while, she seemed to stabilize, but she never regained
enough strength to even sit up in a chair. During the next few
relatively uneventful days, she felt depressed and frustrated
and felt that she had somehow been violated. Although we
were hopeful that she would rally and get out of the hospital,
she could never truly believe that.

In due course, she was violated even more. On her tenth
day of hospitalization, she was given quinolones for what, in
retrospect, was a worsening of congestive heart failure, and
developed a severe case of Clostridium difficile. She spent an agonizing few days with a distended abdomen, helpless in her bed, as liquid stool ran continuously from her.
Up until that point, her medical care had been by committee,
with my partners often ceding control to a revolving team
of intensivists who had never before met the patient. It was
not my turn to round in the hospital for those fateful days.
Ultimately, I did finally see her in the hospital again. I tried to
make amends as soon as possible.

‘‘Doctor Louie, it’s you,’’ Mrs. R said weakly. ‘‘I’ve been
trying to tell them I don’t want anything more done.’’ She was
appalled at everything that she had been through, and now
this proud woman was embarrassed that her bedclothes were
continually soiled from relentless diarrhea.

The next day, she was worse. Mrs. R lay in the bed
disheveled, unable to eat, unable to get comfortable. I sat at
her bedside with my isolation gown and gloves on, stroking
her hand and talking softly to her. I wanted to comfort her
and to restore her dignity somehow. I wanted to kiss her.
But I did not. Perhaps it was my code of professionalism.
Perhaps it was the contact isolation for the C. difficile.
Or perhaps I did not feel worthy enough after all we had
inflicted upon her.

(Infectious Diseases in Clinical Practice & Volume 19, Number 3, May 2011, The Almost Kiss - εννοείται χωρίς άδεια αναδημοσίευσης...)

Είναι κάτι παππούδια και γιαγιάδια, που έρχονται στο νοσοκομείο και είναι πραγματικά για φίλημα... Θυμάμαι ειδικά ένα φιλί σε μια γιαγιά από την Αλβανία... Τι είναι αυτό το μεγάλο συναίσθημα, που σε συνδέει με τους ανθρώπους αγαπητέ μικρέ ιατρέ μου; Είναι τόσο μεγάλο που μπορεί να παραμείνει μεγάλο όσο εσύ... μεγαλώνεις και γίνεσαι μεγάλος (σε ηλικία και εμπειρία) ιατρός; Ή μήπως η μεγαλοσύνη αυτής της σχέσης είναι αντιστρόφως ανάλογη με την ηλικία σου, δηλαδή όσο εσύ μεγαλώνεις αυτή η μεγάλη σχέση σου με τους ασθενείς μικραίνει και... μακραίνει;

Δυο ακόμη σχόλια για αυτήν την ιστορία πέρα από τον Ατλαντικό:

1. Τα όρια της ανθρώπινης ζωής -η έναρξη και η λήξη του ανθρώπου- πάντα μπέρδευαν και δυσκόλευαν τους ανθρώπους και δη τους ιατρούς. Η αντίληψη της φύσης, τα όριά της και γιατί όχι και τα όργιά της, ανέκαθεν ήταν ένα θέμα πνευματικής διελκυστίνδας.

2. Αγαπητέ Τειρεσία, βλέπουμε ότι ακόμα και οι ξένοι φίλοι μας ιατροί, αυτοί που δημοσιεύουν σε μεγάλα ιατρικά περιοδικά, μιλούν για υπερήλικες που αδυνατούν να ελέγξουν τη εκροή και την κατανομή διαφόρων σωματικών υγρών τους, με αποτέλεσμα να λερώνονται... Κάτι για το οποίο έχω μιλήσει και εγώ σε παλαιότερη ανάρτηση, χωρίς να θέλω να τους θίξω, που εσύ όμως το εξέλαβες ως απέχθεια και αηδία από μέρους μου για αυτούς τους πάσχοντες. Ήρθε η ώρα λοιπόν να σου ξαναπώ ότι το να αναφερόμαστε σε έναν υπερήλικα άρρωστο που είναι λερωμένος και ανακατεμένος με τα δικά του σωματικά υγρά, δεν αφορά έναν υποβιβαστικό τρόπο αντιμετώπισης. Δεν είναι ταμπού -πλέον- να μιλήσουμε για όλα τα θέματα της ανθρώπινης παρουσίας ξεκάθαρα και δεν επηρεάζει τα πραγματικά μου αισθήματα για αυτούς τους αρρώστους.