Many have studied to exasperate the ways of Death, but fewer hours
have been spent to soften that necessity.
Sir Thomas Browne
Physicians
have never quite known how to behave at the bedside of their dying
patients. It may even have been harder 30 years ago before our amazing
life-extending (or dying-extending) technologies were available
to keep us busy. I knew a distinguished endocrinologist who, when
his patient took her last breath as he stood by, seemed embarrassed,
crossed himself, bowed slightly, and backed out of the room. Sometimes
in those far off days we would call for an epinephrin-filled syringe
with a long needle and aim it at the precordium, empty it, and wait.
In my experience nothing ever happened, but we could leave feeling
that we had done our best.
Now
hospital deaths are often wild, a confusion of unfeeling, but well-meaning,
noisy busyness in the ICU, nurses and housestaff standing by or
manipulating tubes, defibrillators, respirators, or just watching
the monitor as someone forcibly and rhythmically compresses the
chest. Hardly the euthanasia, the peaceful departure, the
good death that the ancients wished for themselves and their families.
Daniel Callahan wrote of the "wild death," earlier described
by Philippe Ariès, and now so common in our hospitals:
It is wild not simply because it is out of control
and terrorizing in its modern incarnation, but also because, in
the name of combating mortality, it has managed simultaneously to
subvert the institution of medicine, which cannot overcome mortality,
and the morality of human decisions about life and death, which
should not have to bear the burden of omni-responsibility.1
Callahan hardly intended to deny anyone
the right to choose the wild death, "… technological brinkmanship
without restraint, aiming to go as far as medical aggressiveness
ROBERT U. MASSEY, M.D., Professor Emeritus, Division of Humanistic
Studies, Department of Community Medicine and Health Care, University
of Connecticut School of Medicine, Farmington.
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will allow," but that he should know and be prepared to
accept "risking a terrible death—a risk for himself but
also for those who must care for him."2
In discussions
with older men and women, those mostly well beyond the Psalmist's
three score and ten, I have found an almost universal fear—even
terror—that instead of that peaceful death that nature so often
provides, they will be pummeled by EMTs, delivered to the ER, and
then rolled away to the ICU with absolutely no choice in the matter,
and spouses or children powerless, or not aggressive enough, to
intercede. Over and over I hear of living wills ignored, especially
when they could not be produced on the spot. One elderly man thought
he might have DNR tattooed on his forehead! More than this, many
are concerned that in the helplessness of their final illness they
will be subtly urged by well-meaning families and physicians to
have just one more round of chemotherapy or radiation, or will be
cheated out of a quiet death from pneumonia. I recall a wife and
her two sons, both ministers, blocking the hospital room doorway
of her husband and their father, near death from leukemia, for whose
pneumonia a resident had, not inappropriately, ordered antibiotics
to be given. They won the standoff, but only because they were able
to reach the patient's physician and friend by phone. The patient
died a peaceful death 24 hours later, and the resident sulked.
Leon
Kass writes that our urge to medicalize death is hubris and
reminds us of the tragic fate awaiting those who succumb to this
all-too-human fault. "We do not understand that the project
for the conquest of death leads only to dehumanization, that any
attempt to gain the tree of life by means of the tree of knowledge
leads inevitably to the hemlock.…" and that "the
victors live long enough to finish life demented and without choice."
He concludes:
The present crisis that leads some to press for
active euthanasia is really an opportunity to learn the limits of
the medicalization of life and death and to recover an appreciation
of living with and against mortality. It is an opportunity to remember
and affirm that there remains a residual human wholeness—however
precarious—that
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can be cared for in the face of incurable and terminal illness.
Should we cave in, should we choose to become technical dispensers
of death, we will not only be abandoning our loved ones and our
duty to care; we will exacerbate the worst tendencies of modern
life, embracing technicism and so-called humaneness where encouragement
and humanity are both required and sorely lacking.3
Over
170 years ago, a medical student at Göttingen by the name of
Carl Friedrich Heinrich Marx wrote his doctoral thesis, De euthanasia
medica, "Medical Euthanasia,"4 by which
he meant, not the active euthanasia, the killing that many are demanding
as an alternative to a wild medicalized death, but rather the passive
good death, the peaceful death of skillful palliation that today
defines hospice care. Almost two centuries ago this newly minted
Med. et Chir. Dr. from his ancient university in Brunswick
reminded his fellow academics of that "great Englishman,"
Francis Bacon, who had written 200 years earlier urging physicians
"to stay with the patient after he is given up,…"
and "to acquire the skill and to bestow the attention whereby
the dying may pass more easily and quietly out of life."
Marx's
recommendations were strikingly similar to the principles of hospice
care today; he would have understood, as perhaps would Bacon, the
notion of physician assisted living (PAL) during life's final exit.
"Most physicians," he wrote, "once they see the expected
result of their treatment to be wanting,… start to lose interest
themselves." He even mentions a program at Heidelberg headed
by a Prof. Mai, and funded by Amalia, Duchess of Baden, that provided
training to women attendants in caring for the sick and the terminally
ill. Marx recommended that these caregivers be "considerate,
watchful, quiet, clean, free of prejudice toward people,… and
adhere to the doctor's orders with greatest obedience." He
described the care of bedsores, and that the "doctor will with
his own eyes repeatedly search for" them.
Marx
asked, "What good will it do the incurable patient to apply
dangerous and dubious therapeutic measures? The entire plan of treatment
will here confine itself within `symptomatic and palliative medication.'"
He even reminded his physician colleagues to see that the patient's
dry tongue and pharynx be moistened. He urged "soothing, soporific,
sedative, analgesic" medicines, and noted
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that "… narcotics are of enormous help." But later
he added the essential caveat, "… and least of all should
he be permitted (italics mine), prompted either by other
people's requests or by his own sense of mercy, to end the patient's
pitiful condition by purposely and deliberately hastening death.
How can it be permitted that he who is by law required to preserve
life be the originator of, or partner in, its destruction?"
In Marx's
brief thesis, written in 1826 upon his being admitted to the faculty
at Göttingen, we can find all the principles of hospice care
and of physician care at the end of life embodied in the PAL program.
Nothing new here. But even he was not their originator; we find
them not only in Bacon, but in the ancients—Pliny, Cicero,
Seneca, the Bible. They are imbedded somehow in our nature, and
even, as Lewis Thomas once suggested in nature itself: why else
the endorphins? Concerning them he wrote, "If I had to design
an ecosystem in which creatures had to live off each other and in
which dying was an indispensable part of living, I could not think
of a better way to manage."
But
when endorphins are not enough for the kinds of nonviolent, prolonged
deaths that we often produce and must endure, we have the means
and the inherent mercy to ease the passage. We should pay more attention
to the business of dying. My Harrison's Principles of Internal
Medicine devotes one and one half pages out of 2,044 to this
matter, but it does address the physician's role: "First of
all, the patient must be given an opportunity to speak to his physician
and to ask questions."
This
is what the PAL program as a part of the advanced directive is all
about. It frees patients who are prepared to plan for the inevitable
event to consider the options, discuss them with their physicians
and families, choose, and then say with Seneca: "I am ready
for death, hence I may enjoy life."
REFERENCES
1.Callahan D: A Troubled Dream of Life: Living
with Mortality,
New York: Simon & Schuster; 1993:90.
2.Callahan D, p. 206
3.Kass LR: Death with dignity and the sanctity
of life, In: Kogan BS, ed: A Time to Be Born and a Time to
Die, New York: Aldine de Gruyter: 1991; 117-45, p. 141.
4.Cane W: "Medical euthanasia": A paper
published in Latin in 1826, Translated and reintroduced to the
medical profession, J Hist Med Allied Sci 1952; 7:401-16.
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