Barney G. Glaser and Anselm L. Strauss-Awareness of Dying-Aldine (1965) PDF
Barney G. Glaser and Anselm L. Strauss-Awareness of Dying-Aldine (1965) PDF
Barney G. Glaser and Anselm L. Strauss-Awareness of Dying-Aldine (1965) PDF
AWARENESS
OF
DYING
BY
Barney G. Glaser
AND
Anselm L. Strauss
ih
s ih
A L D IN E PU B LISH IN G C O M PA N Y / Chicago
To
W A LTER A. G LA SER
and
M IN N IE R O TH SC H IL D STRAUSS
Copyright 1965 by Barney G. Glaser and
Anselm L. Strauss
All rights reserved. No part of this publication may be
reproduced or transmitted in any form or by any means,
electronic or mechanical, including photocopy, recording,
or any information storage or retrieval system, without
permission in writing from the publisher.
First published 1965 by
Aldine Publishing Company
529 South Wabash Avenue
Chicago, Illinois 60605
Seventh Printing 1974
Library of Congress Catalog Card Number 65-12454
ISBN 0-202-30001-3
Designed by David Miller
Printed in the United States of America
Preface
Once upon a time a patient died and went to heaven,
but was not certain where he was. Puzzled, he asked
a nurse who was standing nearby: Nurse, am I dead?
The answer she gave him was: Have you asked your
doctor?
A n o n y m o u s,
circa 1964
viii
AWARENESS OF DYING
m ore rational and compassionate (and the two are far from
incom patible). The chief differences between our approach and
others can be quickly summarized. Recognizing th at most
Americans are now dying inside hospitals, we have focused
upon what happens when people die there. We have focused
on the interaction between hospital staffs and patients, rather
than on the patients themselves. We have reported on contexts
of action rather than merely on attitudes toward death. And
we have been less concerned with death itself than the process
of dying a process often of considerable duration.
This approach reflects our sociological perspective, for we
have attem pted to channel our reform ing impulses into an in
quiry not at all medical in character. If increasingly Americans
are dying within medical establishments, surrounded m ore by
nurses and physicians than by kinsmen, then how do these
representatives of the wider society manage themselves and their
patients while the latter are dying? How is the hospitals organi
zation capitalized upon in this process? W hat forms of social
action, transitory or m ore permanent, arise while handling the
dying of people? W hat are the social consequences for the hos
pital and its staff, as well as for the patients and their families?
T o answer these kinds of questions, we did intensive field
work (involving a combination of observation and interviewing)
at six hospitals located in the Bay area of San Francisco. We
chose a num ber of medical services at each hospital, selected,
as we shall explain later, to give us m aximum exposure to dif
ferent aspects of dying locales where death was sometimes
speedy, sometimes slow; sometimes expected, sometimes unex
pected! sometimes unanticipated by the patient, sometimes antic
ipated; and so on. The reader who is unacquainted with this
style of field research need only imagine the sociologist moving
rather freely within each medical service, having announced his
intention of studying term inal patients and w hat happens
around them to the personnel. The sociologist trails personnel
around the service, watching them at work, sometimes question
ing them about its details. H e sits at the nursing station. He
Preface
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AWARENESS OF DYING
Preface
Contents
PART I: INTRODUCTION
Chapter
Chapter
3
16
Chapter
Chapter
Chapter
Chapter
Chapter
3. Closed Awareness
4. Suspicion Awareness: The Contest for
Control
5. The R itual D ram a of M utual Pretense
6. The Ambiguities of O pen Awareness
7. Discounting Awareness
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47
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79
107
119
136
155
177
204
226
PART IV : CONCLUSIONS
Chapter 14.
Chapter 15.
a p p e n d ix :
259
274
286
295
Part One
Introduction
1
The Problem
of Awareness of Dying
American perspectives on death seem strangely paradoxical.
O ur newspapers confront the brutal fact of death directly, from
the front page headlines to the back page funeral announce
ments. Americans seem capable of accepting death as an every
day affair someone is always dying somewhere, frequently
under most unhappy circumstances. T o account for this absorb
ing interest in death (even death by violence), one need not
attribute to the reading public an especially vigorous appetite
for gruesome details. D eath is, after all, one of the character
istic features of hum an existence, and the people of any society
must find the means, to deal with this recurring crisis. Presum
ably one way to deal w ith jt is to talk and read about it.
Curiously, however, Americans generally seem to prefer to
talk about particular deaths rather than about death in the
abstract. D eath as such has been described as a taboo topic
for us, and we engage in very little abstract or philosophical
discussion of death.1 Public discussion is generally limited to
the social consequences of capital punishm ent o r euthanasia.
Americans are characteristically unwiljing to talk openly
bout the process of dying itself; and they are prone to avoid
telling a dying person that he is dying. This is, in part, a moral
attitude: life is preferable to whatever may follow it, and one
should not look forward to death unless he is in great pain.
This m oral attitude appears to be shared by The professional
people who work with or near the patients who die in our
1 Herman Feifel, Death, in Norman L. Farberow, Taboo Topics
(New York: Atherton Press, 1963), pp. 8-21.
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JJ
the situation where the patient does not recognize his impending
death even though everyone else does. There is the situation
where the patient suspects what the others know and therefore
attempts to confirm or invalidate his suspicion. There is the
situation where each party defines the patient as dying, but
each pretends that the other has not done so. And, of course,
there is also the situation where personnel and patient both
are aware that he is dying, and where they act on this aware
ness relatively openly. We shall refer to these situations as,
respectively, the following types of awareness context: closed
awareness, suspected awareness, mutual pretense awareness,
and open awareness.
The im pact of each type of awareness context upon the
interplay between patients and personnel is profound, for
people guide their talk and actions according to who knows
what and with what certainty. As talk, action, and the accom
panying cues unfold, certain awareness contexts tend to evolve
Into other contexts. Said another way, interaction evolves or
develops; it does not remain static. O ur task will be to trace
typical patterns of interactional development, and to link them
with awareness contexts, according to the following paradigm
for the study of awareness contexts and interaction: (1 ) a
description of each awareness context, (2 ) the social structural
conditions that enter into the context, (3 ) the consequent
interaction, including various tactics and countertactics, (4 ) the
change of interaction from one type of awareness to another,
(5 ) the ways in which various interactants engineer changes
of awareness context, and (6 ) various consequences of the
Interaction for the interactants, for the hospital, and for
further interaction. Each chapter in P art II is organized ac
cording to the above design. The purpose of these chapters is
to show how our theory discriminates various interactional
modes and processes. Thus, they show that the theory works.
Part III, which then follows, is focused on various general
problems associated with awareness contexts: notably as they
bear upon the patient, his family and the hospital staff. These
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2
Expectations
of Death: A Problem in
Social Definition
The issue discussed in this chapter is basic to all discussions
of interaction: How do the interacting persons come to define
both themselves and others as interactants and how do they
m ake redefinitions, if necessary, as the interaction continues?
As it pertains to the dying patient, the question is how hospital
personnel come to see the patient as due to die within some
approximate time period, and how they define their status and
sometimes their selves in their relations with this patient.
The patient m ust do the same with them, in reverse, even if
he never discovers their true definitions of him.
Some years ago the Swedish social scientist G unnar M yrdal,
in his book about race relations in the U nited States, remarked
upon the importance of criteria, in this instance especially a
cinglp criterion, skin color, for defining statuses. H e writes:
I had once another experience which throws light cm the
same problem. . . . T he N.A .A .C.P. had, in 1939, their
an n u al convention in Richm ond, Virginia. I visited the
mmrings and took part in a boat excursion which ended
die convention. O n board I approached a group of offi
cers and crew (w hites) who held themselves strictly
apart, looking on the Association members who had
crowded their ship for the day with an unmistakable
Hihrtnrf- of superiority, dislike, em barrassm ent, interest
and friendly hum or. . . . I told them that I was a
stranger who by chance had come on the boat, just for
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the patient; if relatives are not on hand they are sent a wire
stating that Y our (kin) has been put on the seriously ill list,
please come at once. The physician then has a talk with the
family, while social workers and the chaplain drop in to help.
To be sure, medical personnel at this hospital are reluctant
to initiate all this activity by formally indicating the patients
Impending death, and they wait until the last mom ent to put
patients on the critical list. Paradoxically, the nurses therefore
must work longer with cues unless given explicit information
by the doctor.
Two principal types of cues that can be read by the nurses
are the patients physical condition and the tem poral references
made either by themselves o r the medical staff. Physical cues,
ranging from those that spell hope to those that indicate im
mediate death, generally establish the certainty aspect of death
expectations. Tem poral cues, however, have many reference
points. A m ajor one is the typical progression of the disease,
against which the patients actual m ovement is m easured (he
ll going fast o r lingering ). A nother is the doctors ex
pectation about how long the patient will remain in the
hospital. F o r instance, one patients hospitalization was lasting
longer than the short while anticipated by the physician. Work
schedules also provide a tem poral reference: nurses adjust their
expectations according to whether the patient can continue
being bathed, turned, fed, and given sedation regularly. All
llich references pertain to the tem poral aspect of dying; that
ll, to how long the patient is expected to live.
Because physical cues are generally easier to read, and their
presence helps to establish some degree of certainty about dying,
temporal cues are rather indeterminate when the physical ones
I t absent. The patient m ay die sometime o r at any tim e.
As both types of cues accumulate, they m ay support each other;
for example, as a patients condition becomes m ore grave his
hospitalization grows longer. But physical and tem poral cues
Qan also cancel each other: thus, an unduly long hospitalization
n be balanced or even negated by increasingly hopeful physical
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cues. W hen cues cancel each other, nurses can use the more
hopeful one (he is going home sooner than expected) to balance
o r deny the less hopeful (he looks b ad ). As physical and
tem poral cues accumulate faster and become more severe, they
become harder to deny, and the expectation of death is gradually
more firmly established.
A bout the patients own expectation of death we shall have
much to say in succeeding chapters. H ere we need note only
the most general sources of his expectations. The m ost im
peccable source is the physician himself, who may choose to
announce directly you have little chance to live or your
disease is fatal. However, as noted in C hapter 1, American
physicians very infrequently m ake such announcements. M uch
m ore frequently they drop gentle, oblique references, relying
on the patients willingness to read those references correctly
but if he chooses to ignore their sombre meaning, then physi
cians assume that the patient really does not wish to confront
the fact of his own death.4
Besides the physicians word, what else can the patient
depend on if he does want to know his fate? If one were to
write a set of directives for such a patient it would go as fol
lows: A part from making your physician tell you, listen care
fully to what the staff says about you. Listen carefully also to
anything the medical or nursing personnel may tell you,
obliquely, about your condition; for sometimes they flash cues,
perhaps knowingly or perhaps unwittingly, about you. And do
not forget that you can sometimes force m ore cues out of the
staff members; by being canny and clever, you can catch them
unawares. M any patients, of course, figure out for themselves
such methods for discovering what the staff knows. In addition,
they can attem pt to read the physical cues in their own bodies.
These are sometimes unambiguous enough to be read correctly
by very aged patients or patients with chronic retrogressive
diseases. Again, as with the nurses themselves, tem poral cues
4 This topic of disclosure to patients by doctors is taken up in detail
in Chapter 8.
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Part Two
Types of
Awareness
Contexts
3
Closed
Awareness
In Am erican hospitals, frequently the patient does not recognize
his impending death even though the hospital personnel have
the information. This situation can be described as ^ closed
awareness context. Providing the physician decides to keep
the patient from realizing, or even seriously suspecting, what
his true status is, the problem is to maintain the context as a
closed one. With a genuinely comatose patient, the staff mem
bers naturally need not guard against disclosure of his terminal
condition. As an interactant, the comatose person is what
Goffman has called a non-person. 1 Two nurses caring for
him can speak in his presence without fear that, overhearing
them, he will suspect o r understand what they are saying
about him. Neither they nor the physicians need to engage in
tactics to protect him from any dread knowledge. A nd of
course with term inal babies, no precautions against disclosure
are needed either. But with conscious patients, care m ust be
taken not to disclose the staffs secret.
CO N TR IB U TIN G STRU CTU RA L CONDITIONS
There are at least five im portant structural conditions which
contribute to the existence and maintenance of the closed
awareness context.2 First, most patients are not especially
1 Erving Goffman, The Presentation of Self in Everyday Life (Edin
burgh, Scotland: University of Edinburgh, 1956), pp. 95-96.
* Cf. Barney Glaser and Anselm Strauss, Awareness Contexts and
Social Interaction, American Sociological Review, 29 (October, 1964),
pp. 669-679.
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ASSESSMENT M A N A G EM EN T
To sustain the unaware patients belief in their version of
his future biography, the staff members m ust control his assess
ments of those events and cues which might lead him to suspect
or gain knowledge of his terminality. Their attem pts at managing
his assessments involve them in a silent game played to and
around him ; during which they project themselves to him as
people who are trying to help him get better, or at least to
keep him from getting worse. They must be sufficiently com
m itted to this game, and sufficiently skilled at it, not to give
it away. Their advantage is that they can collaborate as a
team, sometimes a very experienced one, against an opponent
who, as noted earlier, has ordinarily not m uch experience in
discovering o r correctly interpreting signs of impending death,
and who is usually without allies.
Though the staffs explanations of his condition initially
may seem convincing to the unaware patient, and though he
may greatly trust the staff, he may begin to see and hear things
Closed Awareness
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pate death for some time, then they will extend the temporal
range implied in their talk. One nurse thus said, before leaving
for a weekend, See you next week. A nother told a patient
that he would need another X ray in two weeks. Similarly, they
talk about blood tests to be done next week, or about the
familys impending visit. One young nurse told us that she
used to chat with a young patient about his future dates and
parties, but that after discovering his certain and imminent
death, she unwittingly cut out all references to the distant
future. It is not easy to carry on a future-oriented conversation
without revealing ones knowledge that the conversation is, in
some sense, fraudulent, especially if the speaker is relatively
inexperienced.
Staff members, again especially if they are inexperienced,
m ust also guard against displaying those of their private
reactions to him and to his impending death as might rouse
the patients suspicions of his terminality. F or instance, young
nurses are sometimes affected by terminal patients of their own
age whose deaths become standing reminders of their own
potential death. ( I found . . . that the patients who concerned
me most when they died were women of my own age. . . . )
Identification of this kind is quite common, and makes more
difficult the staff members control of their behavioral cues.
Their reactions to the patients social loss 8 can also be
revealing. In our society, certain values are highly esteemed
among them youth, beauty, integrity, talent, and parental and
marital responsibility and when a terminal patient strikingly
embodies such values, staff members tend to react to the
potential or actual loss to his family o r to society. B ut such
reactions m ust not be allowed to intrude into the fictionalized
future biography that is directly and indirectly proffered to
the patient. Since personnel tend to share a common attribution
of social value, that intrusion is quite possible unless they keep
Barney Glaser and Anselm Strauss, The Social Loss of Dying
Patients, American Journal of Nursing (June 1964), pp.
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so fail to finish it. He may set plans into operation that make
little sense because he will soon be dead, and the plans will
have to be undone after his death. Also, the unaware patient
may unwittingly shorten his life because he does not realize that
special care is necessary to extend it. Thus he may not under
stand the necessity for certain treatm ents and refuse them.
Unaware cardiac patients, as another instance, may even destroy
themselves by insisting upon undue activity.
A word or two should be said about the next of kin. It is
commonly recognized that it is in some ways easier for the
family to face a patient who does not know of his terminality,
especially if he is the kind of person who is likely to die
gracelessly. And if an unaware person is suddenly stricken
and dies, sometimes his family is grateful that he died without
knowing. On the other hand, when the kin m ust participate
in the non-disclosure drama, especially if it lasts very long, the
experience can be very painful. W hat is more, family members
suffer sometimes because they cannot express their grief openly
to the dying person; this is especially true of husbands and
wives who are accustomed to sharing their private lives. Other
consequences for the family of a patient who dies without
awareness are poignantly suggested in the following anecdote:
The dying m ans wife had been informed by the doctor, and
had shared this information with friends, whose daughter told
the patients young son. The son developed a strong distrust
for the doctor, and felt in a way disinherited by his father
since they had not discussed the responsibilities that would
fall to him in the future (nor could they). The father, of course,
could do nothing to ameliorate this situation because he did
not know that he was going to die; and so, this closed aware
ness situation was, perhaps unnecessarily, made more painful
and difficult for the family members.
We have already indicated in detail what difficulties the
closed awareness context creates for the hospital staff, especially
for the nurses. Nurses may sometimes actually be relieved
when the patient talks openly about his demise and they no
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Suspicion Awareness:
The Contest for Control
How does a patient who suspects that he is dying try to verify
his suspicions while others, who recognize that he suspects,
simultaneously attem pt to negate his suspicions? The hallm ark
of this awareness context is that the patient does not know,
but only suspects with varying degrees of certainty, that the
hospital personnel believe him to be dying. The consequential
interaction to run a bit ahead of the story can be described
metaphorically as a fencing match, wherein the patient is on
the offensive and staff members are carefully and cannily on
the defensive. U nder conditions of closed awareness there was
little contest for interactional control; now a contest between
patient and staff is characteristic.
This particular awareness context should be distinguished
from two others involving suspicion, neither of which we shall
analyze but which require mention. These are both closed
suspicion contexts. One type is closed because, though the
patient is suspicious, the staff does not recognize his suspicion.
A patient may choose not to reveal his suspicion, and manage
that game for some while, but only rarely can he maintain this
silent and difficult pose for any considerable time without
either being discovered or confirming his suspicions about his
true status. Perhaps a more im portant type of awareness con
text, for our purposes, occurs when staff members wonder
but are not sure whether he really does suspect the worst. Or,
they may wonder whether he really knows but is choosing
not to reveal his knowledge. In either event they are careful
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THE PA T IE N T S IN Q U IR Y AN D TACTICS
The patients objective is to get true indicators of his sus
pected status; that is, he wants validating cues that tell him for
sure. H e may attem pt to obtain the crucial information first
hand, by sneaking a look at his medical charts or by trying to
overhear staff conversations. H e may also directly query his
physician or the nurses, Am I going to die? not necessarily
expecting an honest answer but hoping th at his earnest desire to
know will elicit at least a revealing one. Nurses find themselves
confronted from time to time with these queries, which may be
asked suddenly to catch them off guard.
But if a patient receives a negative answer, or if he chooses
not to ask directly, then he may make various kinds of indirect
queries. A simple approach is to announce that he is dying in
order to see how staff members react. A patient may hint that
he is dying without making a straightforward announcement,
again seeking to elicit significant cues. H e may engage a nurse
or physician in conversation about his symptoms, pressing very
hard, then listening intently for the meanings around the edges
of their answers and comments. In certain illnesses, as in can
cer, a great many medical tests may be given; these test situa
tions afford opportunity for conversational gambits. Shrewdest
of all are the conversational snares a patient can set for unwary
personnel, to get them unwittingly to reveal w hat they know or
contradict implicitly what someone else has told him. Those
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5
The Ritual Drama
of Mutual Pretense
W hen patient and staff both know that the patient, is dying
but pretend otherwise when both agree to act as if he were
going to live then a context of m utual pretense exists. Either
party can initiate his share of the context; it ends when one
side cannot, or will not, sustain the pretense any longer.
The mutual-pretense awareness context is perhaps less
visible, even to its participants, than the closed, open, and
suspicion contexts, because the interaction involved tends to
be more subtle. On some hospital services, however, it is the
predominant context. One nurse who worked on an intensive
care unit rem arked about an unusual patient who had announced
he was going to die: I havent had to cope with this very
often. 1 may know they are going to die, and the patient knows
it, but (usually) hes just not going to let you know that he
knows.
Once we visited a small Catholic hospital where medical
and nursing care for the many dying patients was efficiently
organized. The staff members were supported in their difficult
work by a powerful philosophy that they were doing every
thing possible for the patients comfort but generally did
not talk with patients about death. This setting brought about
frequent mutual pretense. This awareness context is also pre
dom inant in such settings as county hospitals, where elderly
patients of low socioeconomic status are sent to die; patient
and staff are well aware of imminent death but each tends to
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let us say, then the illusion will be shattered. The clown must
also do his best to sustain the the illusion by clever acting, by
not playing too far out of character. Ordinarily nobody
addresses him as if he were other than the character he is
pretending to be. T hat is, everybody takes him seriously, at
face value. A nd unless particular members return to see the
circus again, the clowns perform ance occurs only once, be
ginning and ending according to a prearranged schedule.
O ur two simple examples of pretense suggest some im
portant features of the particular awareness context to which
we shall devote this chapter. The make-believe in which patient
and hospital staff engage resembles the childs game much
more than the clowns act. It has no institutionalized beginning
and ending com parable to the entry and departure of the clown;
either the patient or the staff must signal the beginning of
their joint pretense. Both parties m ust act properly if the
pretense is to be m aintained, because, as in the childs game,
the illusion created is fragile, and easily shattered by incon
gruous realistic acts. B ut if either party slips slightly, the
other may pretend to ignore the slip.2 Each episode between
the patient and a staff member tends to be brief, but the mutual
pretense is done with terrible seriousness, for the stakes are
very high.
21. Bensman and I. Garver, Crime and Punishment m the Factory,
in A. Gouldner and H. Gouldner (eds.), Modem Society (New York:
Harcourt, Brace and World, 1963), pp. 593-96.
3 A German communist, Alexander Weissberg, accused of spying
during the great period of Soviet spy trials, has written a fascinating
account of how he and many other accused persons collaborated with
the Soviet government in an elaborate pretense, carried on for the
benefit of the outside world. The stakes were high for the accused
(their lives) as well as for the Soviet. Weissbergs narrative also illus
trated how uninitiated interactants must be coached into their roles
and how they must be cued into the existence of the pretense context
where they do not recognize it. See Alexander Weissberg, The Accused
(New York: Simon and Schuster, 1951).
67
IN ITIATING T H E PR ET EN SE
This particular awareness context cannot exist, of course,
unless both the patient and staff are aware that he is dying.
Therefore all the structural conditions which contribute to the
existence of open awareness (and which are absent in closed
and suspicion awareness) contribute also to the existence of
mutual pretense. In addition, at least one interactant must
indicate a desire to pretend that the patient is not dying and
the other must agree to the pretense, acting accordingly.
A prime structural condition in the existence and m ain
tenance of mutual pretense is that unless the patient initiates
conversation about his impending death, no staff m em ber is
required to talk about it with him. As typical Americans, they
are unlikely to initiate such a conversation; and as professionals
they have no rules commanding them to talk about death with
the patient, unless he desires it. In turn, he may wish to initiate
such conversation, but surely neither hospital rules nor common
convention urges it upon him. Consequently, unless either the
aware patient or the staff members breaks the silence by words
or gestures, a m utual pretense rather than an open awareness
context will exist; as, for example, when the physician does not
care to talk about death, and the patient does not press the
issue though he clearly does recognize his terminality.
The patient, of course, is more likely than the staff mem
bers to refer openly to his death, thereby inviting them, ex
plicitly or implicitly, to respond in kind. If they seem unw illing,
he may decide they do not wish to confront openly the fact of
his death, and .then he may, out of tact or genuine empathy
for their em barrassm ent o r distress, keep his silence. H e may
misinterpret their responses, of course, but for reasons sug
gested in previous chapters, he probably has correctly read
their reluctance to refer openly to his impending death.
Staff members, in turn, m ay give him opportunities to speak
of his death, if they deem it wise, without their directly or
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dying?
N u r s e : W e ll, n o , h e n e v e r ta lk e d a b o u t it. I n e v e r
h e a r d h im u s e th e w o r d c a n c e r . . . .
I n t e r v i e w e r : Did he indicate that he knew he was
dying?
N u r s e : Well, I got that impression, yes. . . . It wasnt
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CONSEQUENCES O F M U TU A L PR ET E N SE
For the patient, the pretense context can yield a measure
of dignity and considerable privacy, though it may deny him
the closer relationships with staff members and family mem
bers that sometimes occur when he allows them to participate
In his open acceptance of death. A nd if they initiate and he
accepts the pretense, he may have nobody with whom to talk
although he might profit greatly from talk. (O ne term inal patient
told a close friend, who told us, that when her family and
husband insisted on pretending th at she would recover, she
suffered from the isolation, feeling as if she were trapped in
cotton batting.) F or the family especially more distant kin
the pretense context can minimize em barrassm ent and other
Interactional strains; but for closer kin, franker concourse may
have many advantages (as we shall discuss further in C hapter
6.) Oscillation between contexts of open awareness and m utual
pretense can also cause interactional strains. We once observed
a man persuading his m other to abandon her apathy she had
permanently closed her eyes, to the staffs great distress and
"try hard to live. She agreed finally to resume the pretense,
but later relapsed into apathy. The series of episodes caused
some anguish to both family and patient, as well as to the
nurses. When the patient initiates the m utual pretense, staff
members are likely to feel relieved. Yet the consequent stress
of either maintaining the pretense o r changing it to open aware
ness sometimes may be considerable. Again, both the relief and
the stress affect nurses more than medical personnel, principally
because the latter spend less time with patients.
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The Ambiguities
of Open Awareness
Whenever both staff and patient know that he is d y in g , and
acknowledge it in their actions, the context is one of open
awareness. (W e have touched several times on the structural
conditions that contribute to the existence or appearance of
open awareness.) But openness does not eliminate complexity,
and, in fact, certain ambiguities associated with two properties
of the open awareness context are inevitable. The first the
time and m anner of death will occasionally be relevant to
our discussion. The second property, however, will be central
because it pertains directly to awareness o f death itself.
First, even when he recognizes and acknowledges the fact
of terminality, the patients awareness is frequently qualified
by his ignorance or suspicion about other aspects of his death.
Thus, a patient who knows that he is dying may be convinced
that death is still some months away. Staff members m a y then
conceal their own knowledge of the time th at death is expected
to occur, even though they may refer openly to the fact that
it is expected. Similarly, they may keep secret their expectation
that the patient is going to deteriorate badly, so long as he is
unaware of this contingency. Only rarely will staff members
attempt to make the patient fully aware about time or mode of
death if they judge the time to be sooner than the patient
expects or the m ode unpleasant.
O f course certain structural conditions may occasionally be
present to make the patient m ore aware o f these subsidiary
aspects of his impending death. H e may be a physician who
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STYLES O F DYING
Once a patient has indicated his awareness of dying, the
most im portant interactional consequence is that he is now
responsible for his acts as a dying person. He knows now that
he is not merely sick but dying. He must face that fact. So
ciologically, facing an impending death m eans that the
patient will be judged, and will judge himself, according toi
certain standards of proper conduct. These standards, pertaining to the way a m an handles himself during his final hours and
to his behavior during the days he spends waiting to die, apply
even to physically dazed patients. Similarly, certain standard*
apply then to the conduct of hospital personnel, who must
behave properly as humans and as professionals. The bare
bones of this governed reciprocal action show through the
conversation between a nurse and a young dying girl. The
nurse said, Janet, Ill try as hard as I can ; and then when
the youngster asked whether she was going to die, the nurse
answered, I dont know, you might, but just keep fighting.
A t first glance, staff members obligation to a dying patient
(regardless of specific awareness context) seems simple enough.
If possible, they must save him; if not, then they m ust give
proper medical and nursing care until he dies. But so simple!
a conception of their obligation ignores the fact that the patient;
deserves their obligation because he has been defined as dyings
Generally he need not actively seek definition of this status^
but need only be defined medically as dying (though on rare:
occasions a patient may have to convince his physician th at
he really is dying). On the other hand, ethical and social a t
well as medical judgments enter into questions such as when;
to try to save a patient and when to give up, how much toi
prolong life when death is certain or the patient is already
comatose, and so on. If such nonmedical judgments are rele
vant, then logically some patients must act so that they do
not deserve as much care as do patients who behave properlyy
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make life easier for the staff. Staff members need not work
at getting these patients to behave properly, since they take
considerable responsibility for dying properly if not with
dignity, then with minimal loss of self-control. (F o r instance,
one American nurse described an old-world patient who closed
off his life with great ceremony: he called his family to his
bedside, so that he could say farewell, then thanked the nurse
for all her care, and finally closed his eyes to sleep and die.)
The staff members need only align their own conduct with the
patients particular but acceptable style of facing death.
Patients who do not die properly, on the other hand,
create a m ajor interactional problem for the staff. The problem
of inducing them to die properly gives rise, inevitably, to a
series of staff tactics.2 Some are based on the patients under
standing of the situation: staff members therefore command,
reprimand, admonish and scold. Thus one nurse spoke firmly
to patients, or relatives, when they began to make too much
noise at the approach of death. A nother scolded a patient, If
you can do all that, why you can drink fluids too. If youd
eat and drink, then the doctor wouldnt have to stick needles
in your legs. And patients are told to stop incessant crying,
It doesnt help you and it doesnt make me feel any better.
Threats are also used:
I asked what they did about such patients generally, and
she went into a lovely imitative act: she put on a firm
voice and appearance and told the imaginary patient
just what would happen to him if he didnt take what
ever he was supposed to take, or do whatever he was
supposed to do. If you dont do this, then these conses Getting the patient to die properly is, of course, also a problem
in the suspicion awareness and mutual pretense contexts. In the latter
situation, however, the tactics characteristic of open awareness can also
be used; or the staff can occasionally shatter the pretense, but then
quickly return to it. When a patient is suspicious of his terminality^
inducing him to die properly is managed less directly and fully than
when the patient is aware. Consequently, we have chosen to discuss
acceptable dying mainly in connection with the open awareness
context.
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93
ment rem arked that: The m other was irritable and swore
at both the daughter and the R N s. Hospital personnel do
not usually have to contend with difficult families as often or
as directly as visiting nurses, but when they do, they may en
counter the same problems of management.
O ur discussion of the style of dying would be incomplete
if we failed to note that the patients own conceptions of the
proper way to die may contradict staff expectations. When
a patient has his own clear conception of propriety, staff mem
bers may have difficulty inducing him to accept or conform to
their ideas. Occasionally, for example, a patient displays so
much composure as to seem unnatural: The hospital staff
reacted to W erts behavior, which changed in no particular
from his norm al behavior, with awe and awkwardness. I had
hoped they would react with easy frankness toward him. In
stead the opaqueness of the relationship between patient and
medical attendants seemed to increase. . . . One . . . young
nurse . . . said to me, B ut hes so natural. 4
One patient we observed greatly unnerved the nurses be
cause he insisted upon signing his own autopsy permit. Others,
as already noted, simply want to die in private, alone with
themselves and perhaps with their God. In fact, some patients
would rather die at home, not because of the familiar sur
roundings, but because then they can minimize interference
with their own managem ent of death. In the hospital, the
nurses tend to see gestures toward privacy as a rejection of
themselves, and find them difficult to understand or tolerate.
And when a hospital patient commits suicide, he represents at
its widest the potential gulf between staff and patient concep
tions of the proper approach to death, for suicide epitomizes the
possibilities for rationally managing ones own death so as to
remove it from staff control altogether. Thus, staff members
may sometimes condone a suicide b u t rarely can fully approve
of it.
4 Wertenbaker, op. cit., p. 66.
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T H E P A T IE N T N EG O TIA TES
The interaction between patient and staff members is also
greatly affected by the patients negotiations with them. Every
sentient patient, whether terminal or not, wants to get certain
things or to have certain events occur; he coaxes, wheedles,
bargain#, persuades, hints, and uses other forms of negotiation.
A patient who is aware that he is dying may attem pt to negoti
ate explicitly about matters pertaining to his own dying.5 F or
what he gains, he can, in return, offer specific cooperation with
the staff, or a generally acceptable style of dying; or even,
negatively, threaten a less acceptable style if they will not
negotiate properly.
M uch of the daily negotiation centers around the pacing
and minimizing of such routines as bathing, eating, taking
medication or undergoing treatments. Understandably, a nurse
wants these routines scheduled, and if they are medically im
portant, she wants them done properly. B ut a weary or de
pressed patient may wish to delay or completely avoid some
routines. Thus, when a cancer patient suggests later cooperation,
the nurses may not urge him to eat or bathe or have his
tem perature taken; or they may cater to his wishes to the
extent of offering to do something for him ( How about a
bath now? ) rather than announcing that something will now
happen.
A patient sometimes rejects a nurses offer, perhaps by
saying that he is not going to get out of bed anymore and thus
implying clearly that his end is near. O r, foreseeing his end,
a patient may bargain to avoid some routine. ( H e kept telling
me he doesnt need a bath, hes not going to be around very
long anyway, and I dont care what you do to me, and Im
going to die anyway. ) H e may negotiate for a delay in pro* Negotiation about dying may occur also in the suspicion awareness
or mutual pretense contexts. We have chosen to discuss negotiation,
however, in relation to open awareness contexts because their negotia
tions are especially explicit,
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the physicians promise not to let him live needlessly long, not
to perm it him to die in excessive pain, and to let him know
when death is quite near. And of course patients negotiate
principally with kinsmen to have things done after death has
taken place.
It is worth noting also that a person who is dying in an
unacceptable m anner faces difficulties when he attempts to
gain his ends through negotiation. Staff members understandably
have less patience for the negotiation and altogether less empa
thy with him. One woman, for instance, behaved so badly
for so many weeks that the nurses gradually took to spending
as little time with her as possible. Shortly before she died, the
chaplain entered her room and found her in considerable pain.
She said, Im looking for the nurses. The chaplain, when
later describing the scene, remarked that Id been pushing
the nurses on this just as hard as I could and was wondering
how far I could go on pushing them. H e helped to rearrange
the patients body on the bed so as to reduce her pain. Then
he and she prayed together. As he left the room, he asked, Is
there something else you would like the nurses to do for you?
She said, Yes, see that one comes immediately. The chaplain
thought to himself that he wasnt sure whether he could manage
that particular feat. In the hallway he found a nurse and, put
ting his arm around her, he asked, How about doing me a
favor? Would you go in and take care of M rs. Plum immedi
ately? She answered, Yes, Ill do it for you as a favor.
NON -M ED ICA L N EG L IG EN C E AND PR ID E
From the staffs point of view, negotiation involves much
more than simply deferring to patients wishes. If the staff
plays ball with a patient, of course, then he is more likely
to die in a m anner acceptable to them. Less obvious in the
negotiation is that they may develop an emotional commitment
to fulfilling their end of bargains made with patients. If they
succeed, they can remember the patient, after his death, with
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then she can feel that she has done her hum an duty. If she
fails him, she is likely to feel somewat negligent. Promises may
be extended to relatives also. One nurse sent a husband to the
coffee room, promising that if his wife began to die, he would
be notified in time, but she failed to notify him quickly enough,
and afterwards felt very badly.
Negotiations need not take such an explicit form as exacting
and giving a promise. Nurses, thus, sometimes feel negligent
when they cannot converse adequately with patients who wish
to talk about their impending deaths, whether the desire to
talk is announced or only signaled. Here is an unusual but
illuminating example:
We had a m an on a pacemaker. We had him in inten
sive care for five weeks. We were probing his chest, four
times a day; he was arresting. . . . He developed an
infection. As long as they keep draining it, hell live.
But its deep and eventually going to get him. I ran out
of things to say. I had to sit and watch him and pound
his chest for five weeks. . . . I was very awkward be
cause he was very intelligent and very much aware of
what was going on. . . . Every day I had to come in
and say Good morning, how are you today? We
talked, we used to read, it was just terrible. I was never
so much involved with a patient.
Even physicians sometimes betray similar feelings of negli
gence or unease by the very brusqueness with which they reject
invitations to talk while making medical examinations of patients
who are fully aware of their own terminality.
A chaplain, whom we observed, derived great satisfaction
(because of having few feelings of negligence) from his ability
to converse with dying patients about their oncoming deaths
as well as about their post-death affairs. His satisfaction is
highly instructive for two reasons. He could respond to patients
invitations to talk and, indeed, draw them into conversation
better than could the nursing and medical personnel. And he
was wonderfully able to wed his professional standards, with
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7
Discounting
Awareness
In each of the foregoing chapters, we have described ways in
which others consider a patients actual or potential awareness
of his impending death, in combination with their own aware
ness. But imagine, now, certain situations in which the patients
awareness might be discounted. The hopelessly comatose pa
tient, of course, comes most quickly to mind, but awareness is
also discounted in less obvious cases. O ur discussion in this
chapter is intended to highlight, by contrast, the behavior that
occurs because people usually must take awareness into account.
CA TEG O R IC A L DISCOUNTING
With certain categories of patients, staff members may act
without taking awareness into account. We shall consider four
such categories, beginning with prem ature babies.
Most premies who die are recognized as doomed at time
of birth, or even before. Because an infant cannot know that
it is dying, the nurses on premie services need not take aware
ness into account. They can talk, in the infants presence,
about the time it is likely to die, o r how its parents feel about
its death, or say that they themselves feel its just as well
the infant will die. They can act as if they neither wanted nor
expected it to live, because of its physical immaturity. With
other premies, who at first are expected to live but then take
a turn for the worse, nurses work desperately to prevent
death, sometimes becoming very devoted to the dying baby.
Again the nurses behavior can be quite open, rather than
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Discounting Awareness
111
SITUATIONAL DISCOUNTING
Three types of situations also exist in which awareness is
often discounted. The first involves the conscious use of space
to prevent the changing of suspicion or closed awareness into
open awareness, so that staff members can ignore the patient,
as when they talk about his terminality beyond the range of
his hearing. This use of space can be hazardous, since the
patient accidentally may overhear the conversation or take
special pains to overhear it. Yet a spatial barrier very often
allows personnel to discount the patients awareness.
A second type of situation occurs when patients who are
fully aware of their own terminality behave acceptably and
permit others partly to discount their awareness. Conversation
can flow easily because they do not make death the sole topic
of conversation. N ot every word and gesture need touch on
the mutual awareness of the impending death, though after a
few minutes the m atter of terminality may emerge again, en
tering directly or obliquely into the interaction. Even when a
patient who does not accept his death easily converses with a
staff member, terminality can be on the far edge of the patients
consciousness and not appreciably intrude into their conver
sation. And, of course, many tasks that staff members perform
in the patients presence are so remote from m atters of ter
minality that any incidental conversation taking place at the
same time can be commonplace or related to the tasks them
selves.
U nder these rather ordinary circumstances, the discounting
of awareness is optional; staff members may either ignore
awareness or take it into account. But in the third type of
situation, awareness m ust be ignored because other more im
portant matters are at stake. F o r instance, if a patients heart
suddenly stops beating, staff members must ordinarily take
heroic measures to keep him alive. These measures usually
convey to a patient, whether o r not he was previously aware
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would be
trying to
moment,
years if
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but in a lower key they sometimes act much like kinsmen. The
tendency to treat a recently deceased kinsman as if he were
still alive is reinforced by the nurses or physicians efforts to
protect family members against the shock of making symbolic;
farewells to a disfigured corpse, arranging appearances so that)
the deceased person resembles his former self. When they arc
successful, the effect is not only to fix a more normal imagq|
in the kinsmens memories, but permit them temporarily tcj!
regard and act toward the patient as not quite dead.
v
Persons who are present when a death actually occurs arc
often struck by the remarkably thin line that stretches betweeq
life and death. Momentarily, the person now dead seems hardly
dead because he was so recently alive. As long as this mystity
illusion persists, the onlooker tends to act as if he were not
discounting the awareness of a living person. Again, even hos
pital personnel are subject to this brief illusion.
Staff members who give post-mortem care are open te?
another kind of experience as well. General rules of decency;
and institutional instructions, prescribe that the corpse bi(
treated with respect. One should not handle the corpse roughly;
or make any disrespectful gestures toward it; in fact, nothing
should be done to the body that is not required by post-mortem
care. These rules may be neglected because personnel become
callous or because they are in too great a hurry to complete
the post-mortem tasks. Young nurses who witness such dis
respectful handling may become physically sick, or at least
irate, primarily because they feel that hum ans ought not to be
treated thus. They react not only to what they consider inap
propriate behavior, but also to their sense that this person
(the corpse) would have been horrified had he foreseen what
would happen to him after his death. The deceased persons
awareness is thus taken into account, in a strange way, by the
living, even though, realistically, that problem should disappear
after the patient has died.
O ur interpretation of post-mortem reactions may seem
farfetched, but it does highlight our main point in this chapter.
Discounting Awareness
115
Part Three
Problems of
Awareness
Direct Disclosure of
Terminality
One of the most difficult of doctors dilemmas is whether or
not to tell a patient he has a fatal illness. The ideal rule
offered by doctors is that in each individual case they should
decide whether the patient really wants to know and can
take it. However, 69 to 90 per cent of doctors (depending
on the study) favor not telling their patients about terminal
illness,1 rather than following this ideal individual decision.
So it appears that most doctors have a general standard from
which the same decision flows for most patients that they
should not be told. This finding also indicates that the standard
of do not tell receives very strong support from colleagues.
Many conditions reduce a doctors inclination to make a
separate decision for each case. Few doctors get to know each
terminal patient well enough to judge his desire for disclosure
or his capacity to withstand the shock of it. Getting to know
a patient well enough takes more time than doctors typically
have. Furtherm ore, with the current increase of patient loads
doctors will have less and less time for each patient, which
creates a paradox: with more patients dying in hospitals, more
will not be told they are dying. Even when a doctor has had
many contacts with a particular patient, class or educational
differences, or personality clashes, may prevent effective com
munication. Some doctors simply feel unable to handle them
selves well enough during disclosure to make a complicated
illness understandable. If a doctor makes a mistake, he may
'H e rm an Feifel, Death, in Norman L. Farberow (ed.), Taboo
Topics (New York: Atherton Press, 1963), p. 17.
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DEPRESSIO N
The initial response of the patient to disclosure is depres
sion. The large majority of patients come to terms with their
depression sufficiently to go on to the next stage of the response
process. A few do not. They withdraw from contact with every
one and remain in a state of hopelessness. In this limiting sense
they become non-interacting, non-cooperative patients; the
nurses can not reach them. Depression is usually handled
by sedation until the patient starts relating to the staff. In one
case a nurse observed that a patient visibly shortened his life
because of his period of anxiety and withdrawal.
A C C EPTA N C E O R D EN IA L?
A fter an initial period of acute depression, the patient
responds to the announcement by choosing either to accept
or to deny the imminence of his death. In effect, he takes a
stand on whether and how he will die, and this stand profoundly
affects his relations with the staff from that time on.
In general, sharp, abrupt disclosure tends to produce
more denial, than dulled disclosure.6 W hen the disclosure is
sharp, the depression is more immediate and profound, and
denial begins immediately as a mechanism to cope with the
shock.7 T o predict an individuals response, however, one
needs the kind of intimate knowledge of the patient that doctors
would prefer to have. W ithout it, it is very difficult to say which
path to death a patient will take, or for how long. In some
cases, the patients response changes; he cannot hold out against
This hypothesis complements the discussion by Feifel ( op. cit.)
on the importance of how telling is done.
7 For another discussion of denial of illness upon disclosure, see
Henry D. Lederer, How the Sick View Their World, in E. Gartly
Jaco (ed.), Patients, Physicians and Illness (New York: Free Press of
Glencoe, 1958), pp. 247-250. Denial of dying is characteristic of our
society as shown by Robert Fultons data: see Death and the Self,
Journal of Religion and Health, 3, No. 4 (July 1964), pp. 359368. See the analysis of denial of death in American society by Talcott
Parsons, Death in American Society, American Behavioral Scientist, 6
(May 1963), pp. 61-65.
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turned to his wife and said, Well, weve got to get every
thing lined up; I promised [so-and-so] my. . .
This im
mediate getting down to the provisions of a will was considered
abnormal by one nurse who said, Ive never seen a reaction
like that, it was almost m orbid. A nother patient began dis
cussing with the social worker the various veterans benefits
they could obtain for his wife, and another tried to get his
wife, who was emotionally very dependent on him, married
to a hospital corpsman. One patient gave up his pain medica
tion long enough to put his financial affairs in order with the
aid of a social worker, for he knew that as soon as he was
too drugged to operate effectively, his family would try to take
over his estate.
To give the patient a chance to settle his affairs and to
plan for the future of his family, is, of course, an important
consideration when a doctor decides whether to disclose fatal
illness.8 He can seldom be sure, however, that the patients
response will take this direction or advance so far. Moreover,
some affairs to be settled are less im portant than others; still,
patients have a chance to pick up loose ends or accomplish
unfinished business. For example, before entering the hospital
for cancer surgery one woman said, I am going to do three
things before I enter the hospital things Ive been meaning to
do for a long time. Im going to make some grape jelly. Ive
always dreamed of having a shelf full of jelly jars with my own
label on them. Then Im going to get up enough nerve to saddle
and bridle my daughters horse and take a ride. Then Im going
to apologize to my mother-in-law for what I said to her in
1949. A nother patient with leukemia quit work and bought a
sailboat. He planned to explore the delta region of the Sacra
mento and San Joaquin Rivers until his last trip to the hospital.
Another form of active preparation is to attem pt a full
8 A study by Dr. Donald Oken showed that MDs are more likely
to disclose to businessmen because they needed to wind up business
matters; i.e., MDs perceived this matter as important: Donald Oken,
What to Tell Cancer Patients: A Study of Medical Attitudes,
The Journal of the American Medical Association, 175 (April 1961),
pp. 1120-1128.
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^33
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Some patients try to prove they are not term inal by engaging
in strenuous activities. One patient, having been told he had
a bad heart, left the hospital and started spading up his garden
to prove the doctor wrong (and his own denial right). A nother
patient wouldnt stick to his diet. The death impending in the
present can also be denied through future-oriented talk with
the nurses. One patient began making plans to buy a chicken
farm when he left the hospital as soon as he learned he was
going to die. Communication blocks of various sorts aid denial.
Some patients simply dont hear the doctor, other refuse to
admit it, others cannot use the word cancer in any verbal
context, and still others avoid any discussion of the nature
of their illness or the inevitability of death.
As a result of the contest between staff and patient, with
one trying to open the awareness context and the other trying
to close it, a denying patient can start an accumulating process
of reciprocal isolation between himself and nurses, doctors,
family members and social workers. After disclosure, others
expect him to acknowledge his impending death, so they attempt
to relate to him on this basis. Doctors speak to him and nurses
give treatm ent on the understanding that his impending demise
can be mentioned or at least signaled. Family members and
social workers may refer to plans for his burial and his finances.
A patient who avoids the subject when he is not expected to
avoid it forces others to avoid it too, which makes them unable
to help or prepare him. One social worker said, helplessly,
about a denying patient, There was nothing I could do for
him. At this first stage of the isolation process, the patient
forces an implicit agreement between himself and others that
the topic of his terminality will not be discussed, thus instituting
a mutual pretense context. In the next stage, some of these
people may avoid all contact with the patient because he has
frustrated their efforts to help him. Nurses, doctors and social
workers tend to spend their time with patients they can help,
to prevent the feeling of helplessness that often overcomes them
while engaged in terminal care. As a result, the patient finds
himself alone, apart from receiving the necessary technical
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9
The Unaware
Family
A dying patients family creates a chronic problem for nurses.
Family members are relatively easy to handle one at a time,
but as a group they can join forces to put pressure on the
nurse to give them better visiting hours, m ore information,
special treatm ent, and so on. Nurses m ust control the family
so as to keep disturbing scenes at a minimum, and to maintain
family composure, so that family members can make crucial
decisions, visit the patient, and help with patient care, without
disrupting hospital routine.
The nurses problem is compounded, for she often has
to handle many family groups in the course of her day. In the
cancer ward, for example, a nurse may be in charge of a
num ber of long-term dying patients; she has to cope with all
their families through their long ordeal. A nd of course her
task is doubled or even tripled for any patient who has two or
three independent, sometimes hostile families (in-law groups,
two wives one divorced and their children, children s fami
lies, etc.).
A nother condition that increases this aspect of a nurses
work is the rotation of patients under her care. R otation con
fronts the nurse with new, unfamiliar families, while at the
same time the family of a previous patient may still be drifting
around the ward, asking her for information o r help whenever
they pass each other. In addition, on wards with long-term
patients, nurses become acquainted with the families of other
nurses patients, and these families come to make demands on
h er too. (A compensating feature in dealing with the families
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best they can. En route they may disturb staff and patients by
breaking down and sobbing, asking questions and so on. Also
the staff may have to prevent family members from passing
the news on to the patient, usually unwittingly through cues,
say, of grief. And if the closed context changes to either a
suspicion or mutual pretense context, the family must be
supported and guided in the art of either not validating sus
picions or maintaining pretenses.
When there is enough time, then, these reasons for keeping
the family in the dark are likely to outweigh any pressure to
tell them the truth. Even when time is short, family members
may be kept unaware if the doctor suspects they are psycho
logically incapable of bearing up under the news. A nd though
time is usually short on an emergency ward, staff doctors will
prefer not to tell the family that a patient is dying, if they
expect a private doctor to take over, because it is considered
his prerogative to disclose or not.
In many cases, of course, especially in veterans hospitals
and state hospitals, there is no family to tell. The patient may
be without kin, or perhaps no one in his family cares enough
to visit the hospital o r m aintain sufficient contact to be reached
by the seriously ill, come at once telegram. A nurse, a fellow
patient, or a friend may stand in for family, and indeed many
people in this position feel strongly that they are the only
family the patient had before death.
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rate in keeping the secret from the patient and will be reluctant
to reveal it to his family. (In their search for information on
the patients status, relatives may even accost the sociologist
doing field work, since he seems nice enough to approach, looks
intelligent, and is hanging around seemingly not doing much of
anything. If he does respond, the staff may use him to absorb
the relatives anxiety, knowing that he will not jeopardize his
research position on the ward by leaking closed inform ation.)
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bers can help with terminal care, and thus facilitate the ordeal
associated with dying. Linked with this factor is an im portant
one we have already mentioned disclosing to family members
gives them time to prepare themselves for the patients death.
Hopefully, this preparation also renders family members com
posed enough to help during the final ordeal.
Immediate contingencies, especially for short-term and
emergency dying patients, often make it essential to tell family
members quickly, so that they can authorize a treatm ent or an
operation, take leave of the patient, and make social, financial,
and emotional preparations. Sometimes a relative m ust m ake
a lengthy journey if he is to see the patient before he dies. Under
these emergency conditions, relatives may feel cheated if they
are not told promptly enough to give them a chance to partici
pate in the patients last days o r hours. Participation may not
only be a personal need of a family member, but also may be
expected of him by friends and other relatives. A general norm
in American culture is that no one should die alone; preferably,
death should be attended by a close relative.2 Telling the family
too late may m ean that the patients life may have to be unduly
prolonged while awaiting the arrival of a relative. On the other
hand, too sudden a disclosure may leave the family ill prepared
to cope with these last-minute activities, and results can be
traum atic indeed. O ther factors that affect disclosure to the
family are its ethnic status, language, religion, and education,
as well as the degree of rapport with the doctor. These are
among the criteria that a doctor uses to judge whether the
members want, and can take the news, and whether he will
be able to make them understand the nature of the patients
illness.3
See Robert Fulton, Death and Self, Journal o f Religion and
Health. 4 (July 1964), p. 364, for properties of this norm.
T he relationship of social factors such as ethnic status, social class,
language, religion, education to properties of disclosure to the family
(particularly if, when, and how) is an important research problem. Th$
research should also develop the intervening interaction process that
links the relationship of a social factor to a kind of disclosure.
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TRANSITIONS TO AW ARENESS
Staff members use a great many special tactics to ease the
familys transition to awareness. M ost of these tactics are rela
tively purposeful variations on the general procedure for
disclosing terminality to the family.
The customary assumption th at someone m ust be told
has resulted, in some hospitals, in formal procedures for gradual
disclosures to families. A t some point in the patients progress
toward death this point varies, but typically it occurs when
uncertainty becomes firm certainty he is put on a critically or
seriously ill list. This action, usually ordered by the doctor,
sets in motion many activities designed to bring at least one
family mem ber into awareness. If none are on the scene, a wire
is automatically sent to the closest kin: Y our (wife) has been
put on the seriously ill list, please come at once. O r a phone
call is made: Y oud better come over here, your little boy
is injured. These communications, while short of full disclosure
of terminality, create suspicion and prepare a family member
for full disclosure as soon as he reaches the hospital. Once on
the ward the family m em ber is ushered into the privacy of a
room or office and is gently told by the doctor, Unless he
takes a turn for the better, Im afraid he wont pull through.
The doctor then answers questions, while other staff members
come to complete the process of making the relative aware of
the impending death. A nurse, social worker, nun, clerk or chap
lain may take over the last stages of the transition in an effort
to avert a possible breakdown or a scene.
The same process of disclosure is also followed when the
expectations of an aware family mem ber must be altered in a
direction closer to death; for example, from uncertain and
time unknown to certain and time imminent. When
the hospital has no formal procedures, the doctor may initiate
the process on his own, or a nurse may initiate it by reminding
the doctor that the patient has reached a stage that warrants
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doing all we can, or Its out of our hands now, and then
outlining what will come. This briefing tactic can be usefully
interwoven with the known tendency of family members to
take care of each other. In one case a doctor faced seven family
members, including the patients wife, who was on the verge
of collapse. The doctor first briefed the whole group together,
then took the wife to the patients bedside. When she was ready
to leave the patient, obviously close to breaking under the
strain, the doctor returned her to the waiting family, who im
mediately gathered around her in close collective support. At
this point the doctor disappeared, signaling the nurses to stay
away. Thus the weakest family mem ber was brought into
awareness, without imposing on the staff the burden of picking
up the pieces. In addition, the doctor could phrase his briefing
in fairly technical language because the family provided its own
emotional support and control for the wife. H ad the wife
been alone this would have been too harsh an approach. The
presence of stronger family members protected the doctor by
permitting him to keep the wife at a safe distance, emotionally.
The social distance imposed by the use of technical language
made it doubly appropriate for the family to gather round and
help the wife; it also released the doctor from the need to
express much sympathy, so that he could better maintain his
own composure during the strain of instigating the transition
to awareness.
A prime means of softening disclosure to the family is to
leave out the tem poral dimension of the impending death, which
makes the event itself appear less certain than it is. By saying,
Its out of our hands now, the doctor implies that he is
helpless, unable to stop the illness or to ascertain when death
will come. As death approaches, and it becomes appropriate
to reveal the time it is expected to occur, a doctor may either
be very vague It will be a short time or abandon his
effort to soften the blow, making his announcement precise
enough to enable the family to pace its preparations more cor
rectly, if not comfortably.
Gentle disclosure can have negative effects on both family
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had done, the doctor took the woman into a private room to
smooth over the situation.
Disclosure space. As our description of the disclosure pro
cedure suggests, management of space is a strategic factor in
bringing families into awareness. Ideally it occurs in the privacy
of a closed room. A t the opposite extreme, space is disregarded,
as in the case just described, and disclosure occurs through a
blunt surprise announcement made in a public place filled with
people. The less urgent the situation for instance, uncertainty,
with time unknown the more likely a doctor is to disclose in
the hallway instead of his office. Even in the hallway, privacy
varies some places are virtually private and others are full of
heavy traffic. In a closed context, the patients room is generally
taboo for disclosure to the family, though the ends of larger
ward rooms or rooms of comatose patients may not be.
Variations in the effort to manage space depend on the
amount of time the doctor has available (as determined by the
rate at which the patient is dying as well as the doctors work
load), and his relations with both the patient and his family.
The spatial provisions the hospital has made for family mem
bers are also im portant. Some wards have their own waiting
rooms. Some hospitals provide only a central waiting room on
the ground floor, and others provide no facilities at all except
perhaps a chair in the hallway. These various places may be
used for less urgent disclosures that seem to require less than
complete privacy. Invariably, however, all hospitals have near
at hand a room or office where disclosure can be made privately.
N o disclosure. Under certain conditions, the preferred
strategy, o r non-strategy, is simply not to make an explicit
disclosure. When the doctor thinks that terminality is obvious,
in view of the patients visibly moribund condition, he feels
that he need not initiate the disclosure process, expecting family
members to realize what is happening, and to seek help from
a chaplain, nurse o r social worker for their preparations, or
make an appointm ent with him if they need information. While
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The Aware
Family
No clear line divides the family in transition to awareness from
the fully aware family, but staff members can see the difference,
and they change their tactics accordingly. Once a family is
aware that the patient is dying, managing that family takes on
new dimensions. Perhaps the most critical change is in its
visiting patterns. The usual relaxation of visiting restrictions for
an aware family creates for the staff new problems associated
with maintaining family privacy, helping family members main
tain their composure and prepare for the patients death, and
also coping with their intensified need for information.
VISITING
Relaxation of Visiting Rules. When they learn that the
patient is dying, relatives usually increase their visits, coming
more often and in larger numbers, and more of them visit on
private schedules. (Sometimes, of course, particularly for the
old, neglected patients in state hospitals, family members stop
coming altogether after they become aware of the impending
death; this may also happen sometimes to young patients who
are estranged from their families.) If the awareness context
is kept closed to the patient, these increased visits can become
an obvious cue that must be m anaged by both staff and family
to reduce the patients suspicion of his true condition. O ther
wise the increased visits may inadvertently transform the aware
ness context to an open one or to one of mutual pretense.
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1 Rose Laub Coser, Life in the Ward (East Lansing: Michigan State
University Press, 1962), p. 59.
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ber can then, if needed, take the sobbing one down to the lobby
to receive the support of the whole family. Keeping the intimate
family members close at hand also allows them to spell each
other at the patients bedside, thus reducing the strain on any
one member.
U nder the stress of waiting, however, family members may
develop drift routes, the m ore distant relatives trying to get
closer by slipping back up the scale of distance the staff has
put between them and the patient. They drift up elevators, out
of waiting rooms, and past the nursing station to the patient s
door and in to his bedside. W hen they are noticed and chal
lenged, they obligingly return to their assigned waiting space
but soon they start drifting back again. Nurses do have some
control over this tendency, especially in the intensive care wards
where space is at a premium. Once at the door the family mem
ber usually stops and peeks through a window or otherwise
attracts a nurses attention. She may either invite him in or
give him a time to return for a legitimate visit. As long as
relatives acknowledge this door norm , nurses have a means
of control that they can use to redistribute the family members
to their appropriate waiting places.
The Relative as Worker or Patient. A hospital visitor can
not remain at his dying kinsmans bedside for very long without
taking on a role other than that of relative or visitor sug
gested by the situation, one that integrates him with the staffs
daily work. Since the kinsman or relative role is external
to and often interferes with hospital routine, it is useful to
classify the relative in such a way that he becomes a dependable
participant in the work context. The two m ajor roles adopted
by family members are patient and worker, both of which
link them directly to daily activity.
A less frequent alternative is to turn the constant visitor
into a non-person. Completely ignored and discounted, non
person relatives are least disturbing to staff work. In state and
county hospitals for the aged, and in VA hospitals and on
emergency wards, where family visits are less common, few
lh e Aware Family
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they are sure of the time they do not like to be held accountable
for it. A nurse put it so: I do not like to play G od. In one
case, a m other spent her days at her sons bedside, expecting
him to die but, since time was unknown, not expecting death
for a while. Suddenly she noticed that the boys breathing
had become more difficult, and thinking he might soon die, she
asked the nurse about it. The nurse avoided the issue, leaving
her suspicious but uncertain, so that when the boy did die
the blow was harder than it would have been had the nurse
verified her suspicions.
We reiterate, families tend to give patients more time than
they have it is a way of sustaining hope. W ithout a roughly
specific idea of the time of death, family members may tend
to delay their preparations on the basis of a short-run expecta
tion that the patient will continue to live for a while. They
expect him to be alive the following day, even when they are
certain he will die sometime. They expect, therefore, a daily
o r even a weekly living relationship with him, forgetting the
end m ust come. But doctors and nurses can encourage family
preparation, and thereby enhance composure, by keeping fam ily
members up to date with realistic expectations. To this end, it
is advisable for staff to give accurate responses to fam ily mem
bers who are testing suspicions, even though this may require
them to make the statement of probable time of death that
they are generally reluctant to give.
The disclosing of time of expected death is also paced
according to the period of illness, both of which in turn affect
the amount of time the family has to complete preparations.
The patient who is certain to die, but at an unknown time, and
whose illness is a long, lingering one, provides the best oppor
tunity for family preparation. Cases like this afford both
stimulus and time for grieving and for arranging affairs. The
problem here is to see that family members are told the ex
pected time of death early enough to allow them to complete
their preparations. Of course, if the doctor gives no certain
expectation that death will occur in the foreseeable future, as is
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most often the case, then the long illness may be of little bene
fit in allowing the family to prepare itself. W hen a transition
in expectations finally does occur, the family may have no
more time for preparation than the family that learns of the
impending death, only a few weeks in advance. Adequate
preparations take time even when the family members are
told that the patient is certain to die in a few weeks so that
they are stimulated to make full preparations, these few weeks
may not be enough. Short-term illness, or a fatal accident,
often leaves the family only a few days or hours, but even
then an adequate expectation (certainty, known tim e) is neces
sary to stimulate even the minimal preparation that is possible.
Often, however, even on emergency wards where the patient
may be on the verge of dying, the family is only given an
uncertainty expectation. Thus even deaths expected by the
staff can be very surprising to a family that has not had ade
quate death expectations to stimulate its preparations.
Illnesses associated with reprieve patterns that is, the
patient is on the verge of death many times but recovers some
what hinder full preparation. Reprieves spark hope, so that
the family is never completely prepared for the death: They
think the next reprieve may be complete, not tem porary. Thus,
even when the doctor announces a time of death, usually a few
days ahead of time, the family members may feel that the
miraculous return to life they have watched before might
happen again. As one uncle said, It was hard to fully reconcile
ourselves since weve seen her revive before and she could
do it again. W hen a pattern like this is established, the family
may refuse to give up all hope even if the doctor tells them
they must, which may put the family through many tortuous
episodes after each, wishing the patient had died. Further,
the short notice he is able to give them is usually not enough
to allow the family members time to reconcile themselves and
begin preparations.
Linked with lingering and reprieve-pattern illnesses is the
ever constant hope that medical researchers will find a cure
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PR O LO N G IN G L IF E
A part from the needs of teaching and research, several
conditions encourage unduly extending the life of patients in
the nothing more to do phase. Some of these conditions
preclude changing the goal from recovery to comfort, so that
the doctor continues to strive for recovery even though he
knows that death is very certain. O ther conditions perm it a
change in goal from recovery to comfort, bu t still generate
efforts to prolong the patients life.
Change o f goal and time of death. Knowing when the
patient will die, after he has reached the nothing m ore to
do phase, is crucial for the doctors decision as to whether he
should begin a treatm ent that may prolong life indefinitely and
therefore excessively. If he is sure when the patient will die,
he is less likely to prescribe a treatm ent that will prolong
life even for a short time, preferring to let the patient die in
the natural course of the illness. One doctor told us that
if a condition, symptom, o r disease is secondary to the m ajor
problem, then it will not be treated if the effect might be to
prolong death, which is certain and close by. Thus in a
case of metastic cancer, a patient developed pneum onia in the
two days preceding her death. The doctor did not treat the
pneumonia, suspecting that to do so might prolong her life
and assuming that the new illness might make her go a little
quicker.
If the doctor is not sure when the patient will die, however,
he is likely to order treatments blood transfusions, antibiotics,
an operation that may extend the patients life. W ithout a firm
expectation as to time of death, he is usually not willing simply
to wait and let the patient die, since unless something is done,
the patient may live on indefinitely in much greater discomfort.
Com fort surgery may be performed to allow the patient to
eat, or to breathe more easily; antibiotics or blood transfusions
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This is not only true of us; it holds true for many groups of
doctors. These doctors are trying to ensure that awareness
of nothing more to do will prevail over the strongly em pha
sized and organizationally supported medical ideal that life
must be sustained at any cost. They have established an
invisible system to assure that the invisible act will be
performed.
Doctors, particularly the younger ones, often cannot bear
the thought of losing a patient, which comes with recognizing
that there is nothing more to do. Fired with the ideal of saving,
they put patients on life-prolonging equipment, in the vain
hope that they can achieve recovery after all. They search the
literature for clues to new treatments. (A young doctor in a
hospital in San Francisco found such a treatment, saved his
patient and became famous for it.) F o r the m ost part, however,
the effort is of no avail, and eventually the doctor realizes he
is responding to a deeply internalized ideal that can no longer
be fulfilled. Accordingly, he changes his goal and ceases pro
longing. One doctor rescued a patient who suddenly hem or
rhaged but la te r. recognized his lost opportunity to let the
patient die: If I had given it a second thought, I wouldnt
have saved him . This also occurred to a nurse who had
automatically inserted a falling tube but wondered, immediately
afterwards, why she had done it.
Several other conditions, linked with the medical ideal
of prolonging, result in discounting awareness of nothing more
to do. It is often very hard just to watch a patient die. The
sense of helplessness also a consequence of the medical ideal
may cause a doctor to reinvoke the recovery goal and try
to prolong the patients life, hoping to save him later. F or the
moment, at least, this reduces his frustration and helplessness
at being unable to do anything effective. Some doctors feel
that a patients death puts their professional competence in
question, rather than the state of medical knowledge generally;
and as a consequence they will not relinquish the recovery goal
until they feel assured (often after reminders from colleagues
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loses consciousness, that the doctor does not need to say any
thing. Even if the nurse can see no change, she can tell from
the doctors slackening of effort that there is nothing more to
do. This meaning is clear when, for example, the doctor sud
denly stops blood transfusions. Or, the doctor may post the
patients name on a critical or term inal list, so that this inform a
tion is routinely distributed to the nurses involved. A nd the
nurse spends so much more time with the patient that she
is very likely to witness this strategic change in his condition
before the doctor does, and rush to tell him.
As the nurse comes to realize that there is nothing more
to do, she adjusts her goal from recovery to comfort care.
One nurse expressed the goal change this way, You can still
make the patient comfortable and you can still entertain him
and you can still distract him . Thus, in relinquishing the
prospect of recovery she was planning comfort activities. As we
noted in the previous chapter, however, losing the chance to
achieve the prim ary medical goal of recovery, and with it the
highest nursing reward, often results in less involvement and
effort in patient care.
Because this reduced effort is such a common reaction
among nurses, a doctor may again be reluctant to tell a nurse
that there is nothing more to do, if she is not already aware.
His purpose is to keep the nurse alert to recovery as long as
possible, until she becomes aware on her own and starts
thinking in terms of routine comfort. If the nurses awareness
is on the level of suspicion because the doctor has not validated
her suspicions, she is likely to remain doubtful and alert for
counter-cues, still hoping for recovery. H er tendency is to wait
and see; as one nurse put it, If he comes out of it, well work
on him. He only has to give us the slightest cue. Should the
doctor stop working himself, a nurse who still thinks there is
a chance may be horrified and blurt out, Do something,
doctor! A nurse who . is sure the patient is in the nothing
more to d o phase might hesitate to continue working, for
her efforts might result in painful prolonging. F o r nurses who
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A patient who denies his own dying may refuse any attentions
that segregate him from typical or recovering patients, while a
withdrawn patient ignores them just as he ignores all efforts to
pull him out of his withdrawal. Nurses who go out of their
way to engage in good will care are distressed by refusal
or disregard, for the loss of contact reduces them to helpless
ness. They can then give only rudim entary forms of comfort
(perking up a pillow ). There is almost nothing to do until
the patient allows himself to be reached again. Withdrawal
is the patients most extreme control over the pace of inter
action with nurses.
PAINLESS C O M FO R T
M ost of the nurses energy is concentrated on maintaining
painless comfort for the patient. While painlessness is a goal
that is desirable for all patients, it takes on added importance
for a patient who has nothing left to hope for but painlessness.
F or such a patient, lethal risks to insure painlessness through
narcotics are legitimate, though they would never be taken
for patients who can be expected to bear pain in the service
of recovery.(The possibility of addiction is now irrelevant be
cause the dying patient can never be taken off the narcotics.)
Painless comfort is a goal strongly emphasized by doctors,
family, nurses and other patients (as well as the patient him
self), for few people can stand anothers pain. If a patient
is in too much pain, everyone is upset by the scream at the
end of the hall, which threatens to disrupt the routine work
as well as the staffs collective moods and feelings the senti
m ental order of the ward. Thus, the nurse is under considerable
social pressure to control the patients pain successfully.
Differential Death Expectations. To accomplish this task,
a nurse m ust have adequate sedation orders from the doctor.
How adequate the doctors instructions appear to the nurse
depends on their differential appraisal of the patients stage of
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dying. If both doctor and nurse are aware that the patient is
in the nothing more to do phase, then the doctors instruc
tions are very likely to allow the nurse to use her own discretion
in the dosage necessary to keep the patient free of pain. She
may even risk lethal dosages. None of the (nurses) believe
in euthanasia, but its just that as you give these heavy doses
of narcotics you think that this may be the last one he can
take. One nurse reported that her instructions gave her a
leeway that would allow the patient to die in the line of her
duty. The implicit instruction was: Give [this degree of medi
cation] to the patient e v e ry
hours until dead.
If the doctor is aware that there is nothing more to do
for the patient, and gives very loose instructions to a nurse
who is unaware of the patients condition, she may be fright
ened by so much discretionary power. She will cover herself
by phoning the doctor to check dosages or to request lower
dosage orders, checking with the head nurse, sticking as close to
the order as its looseness permits, and so on. She fears that if
anything happens to the patient she could be accused of negli
gence in her interpreting of the loose orders. She also fears
loss of self-control when faced with pain that she knows she
can within the limits of her orders blot out with a heavy, but
potentially lethal dose.
A nurse who realizes somewhat before the doctor does
that the patient is either in, or soon will be in, the nothing
more to do phase, faces other interaction problems. If the
doctor, in preparing to leave the ward, has not given her
sufficiently loose instructions to ensure painless comfort, she
must act fast. She will have to corner the doctor and either
remind him that he has left no instructions or suggest to him
possible changes in old or current instructions. Saying she
might need them, and asking what she should do, she prods the
doctor into giving leeway. If this tactic fails, or if she is too
shy to try it, two alternatives remain. One is to engage in
invisible acts of increased dosage: some nurses, particularly
private nurses, do take m atters into their own hands. The
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13
Awareness and
The Nurses Composure
Despite many adverse circumstances in the dying situation, a
nurse must make every effort to m aintain her professional
composure, for both her own work and the assistance she gives
other staff members depend on it.1 The combined requirements
of dying patients, their families, and the staff for appropriate
levels of involvement in and attitudes toward patients, and also
their kinds of collective moods and degrees of composure,
create and define an overall sentimental order in the ward
and each nurses composure is vital to maintaining that order.
Nevertheless, nurses can become very upset, and a nurses
great fear in the dying situation is that she might lose control
over herself.
While many structural conditions help a nurse m aintain
her composure, other conditions tend to break it down. To
cope with situations that threaten to destroy her composure, a
nurse m ust develop strategies to maintain it. Some strategies
are general avoiding dying patients, for example and there
fore appropriate under many different circumstances; other
strategies are m ore specialized. Some strategies involve inter
action; others consist of collective moods or patterns of be
havior. Some are standard and acceptable to all nurses, so
that anyone may use them ; others are developed privately and
may or may not be condoned by other staff members.
M aintaining professional composure is a complex problem,
in view of the multitude of disturbing conditions that nurses
1 The study of professional composure is, as yet, an unresearched
area in the sociology of professions.
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DYING IS U N C ER TA IN
In this early stage, when nurses are not yet certain that
the patient will die, and do not know when this uncertainty
will be resolved, they perceive little need to protect their com
posure. They therefore do not avoid conditions of working and
talking that induce or encourage involvement with the patient,
though, during the later stages of dying, they will use counter
acting tactics in the same conditions.
Nurses have a general conception of the death ratio i.e.,
the proportion of patients who die on their ward. When
the chances are slim that any patient will die unexpectedly
( We dont have very many patients who die ), nurses permit
themselves to become involved quite freely, to the limit im
posed by the sentimental order of the ward. They do not need
to think in terms of possible death. On wards with a relatively
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them very deeply in the patients fate. As one doctor put it,
Intensive care makes for intense nurses. This situation is
one of the most challenging for nurses, because, as we have
mentioned, they have been trained to regard saving a patient
as one of the highest achievements in nursing, and failure to
save may seriously threaten their composure. In the words of
one intensive care unit nurse: Staff feels different about the
seriously ill [uncertainty] and the terminal [certainty] patients.
They might have saved the seriously ill so they feel worse,
perhaps, that they didnt. A t the same time, however, the
intensity of the work tends to take a nurses mind off the pa
tients fate, reducing her conscious involvement and helping
her to maintain composure during the crisis. Even during
periods when intense work is not necessary, they keep them
selves as busy as possible in order to m aintain their composure
while awaiting the outcome.
However long the crisis period lasts, the prospect of failure
that is, when it seems likely that the patient will be certain
to die also causes the nurses to work even harder, to fore
stall any accusation of negligence (a direct threat to composure)
from themselves, other staff members, or the patients family.
They want to be sure that no stone is left unturned, that
there is no implication that they could have done m ore. To
withdraw their involvement from the patient they engage in
object switching (changing the object of their involvement)
by concentrating on helping patients who have a chance to
live, or on the poor doctor who has tried so hard to bring
the patient through. They also turn to each other for mutual
support in giving up the patient. To each other, they say that
there is nothing more to do, or they rationalize the patients
social loss. Even if he had lived he would have had brain
damage may be said of a young father with everything to live
for.
The risk of losing composure through excessive involvement
is especially high for nurses on the prem ature infant wards.
Nurses tend to become very involved in saving a prem ature
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baby who lives through its first days, when they know the
m other wants it, especially if the baby has no physical defects,
but they can become equally involved in saving a premie that
the m other does not want, because it is alone and helpless in
the world. They adopt the babies, give them names, and
watch over them closely to the end. While the nurses may be
well insulated from the mother, they cannot avoid being aware
of her wishes because she either telephones the ward incessantly
or does not phone at all.
Involvement in the babys fate may even lead a nurse
to phone when she is off duty to keep track of its condition.
This radically departs from the standard strategy to reduce
involvement in patients seldom following a case on which
they are not immediately working, and seldom following their
own cases when not on duty. During the crisis period the very
involved nurse may become quite upset should the premie turn
bad, and some loss of composure is readily understood by
her coworkers. If the premie dies they fall back on the standard
strategies of object switching, absolving themselves of negli
gence, reducing social loss, and referring to Gods will.
Handling the family during this crisis period is also strategic
for maintaining composure. The intense work on all these wards
is somewhat shielded, by doors and door norms, from the
f a m ily This structural arrangement reduces nurses involvement
in the family, and prevents family members from disturbing the
nurses composure by creating a scene or asking many ques
tions. Since the family is unlikely ever to know who the nurses
on the case were, they cannot bother the nurses afterwards
by asking why the patient could not be saved. This means,
however, that any nurse passing through the door m ay be
approached for information (as we mentioned in C hapter 10).
Nurses also try to insulate themselves from the family by
putting relatives in distant waiting rooms, empty treatm ent
rooms, offices, or main lobbies to wait out the crisis. A glasswalled office is a preferred place to insulate family members
waiting out a crisis because they can be watched without actual
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D Y IN G IS C ER TA IN BUT TIM E O F D EA T H
IS UNKNOW N
W hen the nurses are finally certain that the patient will
die, but at an unknown time, the conditions of work and talk
that threaten their composure multiply rapidly. The progressive
building up of strategies begins to snowball. Previous strategies
to manage involvement and maintain composure, are refined
and used more often, and new strategies must be developed.
Work. Since there is nothing more to do for the patient
in this stage of dying, nurses begin now to design their work
to make the last days, weeks, or months of the patients life
comfortable and painless. Nurses work especially hard to make
the patient comfortable at this stage, to overcome their feelings
of negligence by achieving the only goal of patient care remain
ing. The need to feel justified was clearly expressed by the
nurse who said, I feel especially that I want to know I did
everything I could to make the patients last days comfortable.
So if anything I see it as more necessary rather than less.
Self-accusations of negligence are common during this stage
of dying. F or example, one nurse said, Sometimes a death
will linger in my mind. I feel I could have done more to make
her comfortable. In this case, self-accusations of negligence
made it impossible to carry out the m ajor composure strategy
of forgetting the patient and thus reducing involvement in his
death.
Family members may also accuse nurses of neglecting to
keep the patient comfortable; they may start a status-forcing
scene to get the nurses to do what they feel will insure comfort
the nurses job. To avoid such scenes the nurses isolate
the family in waiting rooms o r avoid them and call in other
helpers a social worker, chaplain, orderly, policeman, or ward
clerk. Although the strategy of role switching (referred to
in Chapter 9 ) turning family members over to others to
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him die and to relieving his pain, combine to distress the nurses.
To help regain their composure, some nurses develop a
miracle rationale, hoping that something miraculous will arise
from the research to save the patient after all. A t best, slender
hope offers weak consolation.
A nother way of making dying patients comfortable is to
give some routine care in a somewhat expressive and considerate
manner. When nurses employ the composure strategy of avoid
ing the patient, dying patients sharply feel the nurses pulling
away. But when it comes to the duties of medical care, nurses
cannot literally avoid the patient. They can, however, employ
expressive avoidance ; that is, they avoid him as a person
while they are fulfilling their medical duties. They ignore him,
treat him as a body (that is, socially d ead ), wear bland pro
fessional facial expressions, exude dignity and efficiency, and
refuse or evade conversation, o r else do their chores quickly
and get out before the patient can say anything.
One nurse expressed her failure to make the patient com
fortable in this regard as negligence: I felt guilty after she
died because I could have made her life a little bit more
com fortable. A nother nurse engaging in expressive avoid
ance, while accomplishing routine duties with a 13-year-old
patient, was asked by the patient to play cards with him. This
request for continuous, relatively intimate contact forced her
literally to avoid him; she mumbled something about being very
busy and ran. But even her feeling of negligence later on was
less threatening to her composure than was the prospect of
close contact with a patient whose capacity to involve her
emotionally was, because of his high social loss value, virtually
irrestistible.
In another case a nurse involved with a young patient who
was dying began to avoid him expressively, but he countered
her strategy:
He began to make demands that she would come back
into the room and that she would spend more time with
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get our feelings out, then forget it and go home. But she also
said, referring to a lingering patient. These are the kinds of
deaths that stay with you.
Talk. O utright avoidance and expressive avoidance are
both strategies for precluding conversation as well as control
ling work. However, once a conversation has begun, other
strategies can be used to protect a nurse from involvement or
distress. With patients approaching death, nurses avoid the
subject of death in general. This subject may easily come up
in discussions about another patient further along with the
same disease, thus allowing the first patient to use another
dying or deceased patient as a reference for gauging his
own chances.3 When the awareness context is closed, or one
of suspicion, a nurse cannot discuss another patients impending
death without virtually giving the first patients fate away. When
the context is one of m utual pretense, she might thereby destroy
the comfortable illusion that others, including the patient,
have carefully established. In an open awareness context, she
m ust still decide how much the patient should be told, or wants
to know, about how he o r another patient is going to die. Since
at this stage neither the nurse nor patient knows when he is
going to die, telling the aware patient when another patient
might die or did die may lead him to false and distressing
assumptions. Thus, giving him too many details may cause him
to break down or withdraw from all communication; either
outcome threatens her composure.
Selective listening is another conversational tactic. Nurses
listen only to information from the patient and his family that
will help them with their work, without increasing their involve
ment. They turn a deaf ear, if possible, to details about the
indicators of social loss children, spouse, job, talent that
make the impending death so distressing.
3 The use by patients of other patients as references for ascertain
ing facts about their own condition has been thoroughly studied for
the tubercular patient. See Julius Roth, Timetables (Indianapolis: BobbsMerrill, 1963).
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look into the room as she goes by and all will take turns
answering the patients calls. In some cases, however, one nurse
may have to sit with the patient for eight hours, being relieved
only for meals and coffee. This trap can be quite distressing,
especially if the patient has a high social loss value which
exacerbates the feeling of helplessness. One nurse watching a
14-year-old girl during her last hours said: I felt badly about
it, you know, here was a young girl and just to see her lying
there, and there really wasnt too much you could do for her,
you know, only to keep her comfortable and then she wasnt
even aware of that. I think more than anything, its just a help
less feeling, sort of a loss feeling, you just dont know what to
do and you couldnt do too much in this particular case.
One strategy to reduce the strain on composure imposed
by the death watch is to ask the doctor for flexible sedation
orders. Once the doctor has told the nurses when the patient
is likely to die, they may legitimately request flexible orders,
to insure a comfortable ending for the patient. F o r the nurse
who m ust participate in the death watch, this gives her an
opportunity to alleviate her own distress as well as the patients
sometimes final agony.
Nurses can also find ways to delegate the death watch,
usually to someone who is not quite aware of the task he is
being asked to perform (another use of role switching ). If
the dying patient is in a room with an alert patient, the nurse
may leave the room with a pressing work excuse, asking
the alert patient to call her immediately if he notices a change
in the other patient. Nurses will also ask an ever-present family
member, or perhaps a chaplain, to sit with the patient. If no
one is available, a patient may be left to die alone, between
periodic checks, though nurses find this outcome most disturbing
unless he is already comatose.
W hen the patient approaches death, a num ber of pre
announcements have to be made; keeping a death watch is
a necessary preliminary to these announcements. A doctor must
be called, and calling him either too soon o r too late is em
barrassing, and hence threatening to composure. (Doctors can
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his death would be so delayed, for then they could have per
mitted a more appropriate degree of involvement during the
years of lingering.)
One strategy to handle an overdue death is simply to avoid
and forget the patient. This is sometimes aided by the collective
mood: Its senseless. When the patient lingers on indefinitely
in a comatose state physically alive, socially dead, nurses may
just stop thinking about him. One nurse said in such a case, It
m akes no sense for her to live beyond the point where she
went on living and that was by some m onths.
The patient who is expected to die on the operating table,
b u t instead lives on for three o r four days, is another example
of overdue death. In one such case, during this short but
intensive overdue period, nurses who had participated in the
operation became quite upset. They felt that perhaps more
could have been done for the patient if the doctors had ap
proached him with the expectation th at he was going to
recover, and that everyone had been negligent. Each day, as
they came to work, they asked whether the patient had died
yet. Only after he died could the nurses who were involved
convincingly regain their norm al composure. Thus some overdue
patients are forgotten before death, and others never forgotten.
PESSIMISM AND C OM POSU RE
Built into the development of strategies to manage involve
m ent and maintain composure while the patient is dying, is
an element of pessimism. The nurses base their defenses on a
conservative estimate of the patients chances, preferring ex
cessive caution to the risk of breaking down at the wrong
moment. As we have indicated, this too-careful guarding of
composure may be hard on a patient who is really not as
close to dying as the nurses believe. The nurses pessimism,
therefore, is a source of slightly inaccurate death expectations.
If the patient recovers comes alive a nurse with a
well-developed strategy against losing composure may be dis-
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tressed by the realization that she failed him. She was negligent.
If she had not been so careful to guard her composure, she
could have treated the patient as if he were merely seriously
ill, talking with him about almost anything and motivating
him to get well. N ot only could she have applied her training
more effectively, but the patient would have had m ore com
panionship.
In general, this implicit pessimism causes nurses, too often,
to pull away from patients sooner than necessary and, in
deed, why should it be necessary at all? If the patient has
been unaware that he is expected to die, this pulling away may
risk a prem ature, abrupt disclosure of his impending death
which can be very distressing to the patient and unnecessary
if he is still in the uncertain stages of dying. One uncertain-todie patient who later recovered told us, W hen I felt the
nurses pulling away from me, I knew I was dying and I became
terribly depressed.
Part Four
Conclusions
14
The Practical
Use of Awareness Theory
In this chapter we shall discuss how our substantive sociological
theory has been developed in order to facilitate applying it in
daily situations of terminal care by sociologists, by doctors
and nurses, and by family members and dying patients. The
application of substantive sociological theory to practice requires
developing a theory with (a t least) four highly interrelated
properties. (A s we have dem onstrated in this book and will
discuss explicitly in the next chapter, a theory with these
properties is also very likely to contribute to formal i.e., gen
eral sociological theory.) The first requisite property is that
the theory m ust closely fit the substantive area in which it
will be used. Second, it m ust be readily understandable by
laymen concerned with this area. Third, it m ust be sufficiently
general to be applicable to a m ultitude of diverse, daily situa
tions within the substantive area, not just to a specific type of
situation. Fourth, it m ust allow the user partial control over
the structure and process of the substantive area as it changes
through time. We shall discuss each of these closely related
properties and briefly illustrate them from our book to show
how our theory incorporates them, and therefore why and how
our theory can be applied in term inal care situations.1
1 Applied theory can be powerful for exactly the reasons set forth
by John Dewey, some years ago: W hat is sometimes termed applied
science . . . is directly concerned with . . . instrumentalities at work in
effecting modifications of existence in behalf of conclusions that are
reflectively preferred. . . . Application is a hard word for many to
accept. It suggests some extraneous tool ready-made and complete which
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FITNESS
T hat the theory m ust fit the substantive area to which it
will be applied is the underlying basis of the theorys four
requisite properties. It may seem obvious to require that sub
stantive theory m ust correspond closely to the data, but actually
in the current ways of developing sociological theory there
are m any pitfalls that may preclude good fitness.2 Sociologists
often develop a substantive theory theory for substantive areas
such as patient care, delinquency, graduate education that
embodies, without his realization, the sociologists ideals, the
values of his occupation and social class, as well as popular
views and myths, along with his deliberate efforts at making
logical deductions from some form al theory to which he became
committed as a graduate student (for example, a theory of
organizations, stratification, communication, authority, learning,
o r deviant behavior). These witting and unwitting strategies
typically result in theories too divorced from the everyday
realities of the substantive area, so that one does not quite
is then put to uses that are external to its nature. But . . . application of
science means application in, not application to. Application in some
thing signifies a more extensive interaction of natural events with one
another, an elimination of distance and obstacles; provision of oppor
tunities for interactions that reveal potentialities previously hidden and
that bring into existence new histories with new initiations and endings.
Engineering, medicine, social arts realize relationships that were unreal^
ized in actual existence. Surely in their new context the latter are
understood or known as they are not in isolation. Experience and
Nature (Chicagor-Open Court Publishing Company, 1925), pp. 161-162.
* For many years, Herbert Blumer has remarked in his classes that
sociologists perennially import theories from other disciplines that do
not fit the data of sociology and inappropriately apply sociological
theories developed from the study of data different than that under
consideration. Cf. The Problem of the Concept in Social Psychology,
American Journal o f Sociology (March, 1940), pp. 707-719. For an
analysis of how current sociological methods by their very nature often
result in data and theory that does not fit the realities of the situation
see Aaron V. Cicourel, M ethod and Measurement in Sociology (New
York: Free Press of Glencoe, 1964).
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G E N E R A L IT Y
In deciding upon the analytic level of our concepts, we
have been guided by the criteria that they should not be so
abstract as to lose their sensitizing aspect, but yet must be
abstract enough to make our theory a general guide to the
multi-conditional, ever-changing daily situations of terminal
care. Through the level of generality of our concepts we have
tried to make the theory flexible enough to make a wide variety
of changing situations understandable, and also flexible enough
to be readily reformulated, virtually on the spot, when necessary,
that is, when the theory does not work. The person who applies
our theory will, we believe, be able to bend, adjust, or quickly
reform ulate awareness theory as he applies it in trying to keep
up with and manage the situational realities that he wishes to
improve. F o r example, nurses will be able better to cope with
family and patients during sudden transitions from closed to
pretense or open awareness if they try to apply elements of
our theory (see Chapters 3, 8, 9 ), continually adjusting the
theory in application.
We are concerned also with the theorys generality of scope.
Because of the changing conditions of everyday terminal situa
tions it is not necessary to use rigorous research to find precise,
quantitatively validated, factual, knowledge upon which to
base the theory. F acts change quickly, and precise quantitative
approaches (even large-scale surveys) typically yield too few
general concepts and relations between concepts to be of broad
practical use in coping with the complex interplay of forces
characteristic of the substantive area. A person who employs
quantitatively derived theory knows his few variables better
than anyone, but these variables are only part of the picture. 11
Theory of this nature will also tend to give the user the idea
that since the facts are correct so is the theory; this hinders
the continual adjustm ent and reform ulation of theory necessi Zetterberg, op. cit., p. 187.
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15
Awareness and
the Study of
Social Interaction
We noted in the first chapter that this book would focus upon
a set of related questions: W hat were the recurrent kinds of
interaction between dying patient and hospital personnel?
W hat were the kinds of tactics used by personnel in dealing
with the patient? W hat were the conditions of hospital organi
zation under which interaction and tactics occurred? And in
what ways did they affect the goals and stakes of patient, family,
and personnel in the dying situation? In anticipation of the
pages to follow, we remarked that in finding answers to such
questions we had discovered that most of their variations could
be accounted for by what each party to the dying situation
was aware of about the patients fate. In consequence, we
would deal with these questions as they related to the powerful
explanatory variable of awareness, which we conceptualized
as awareness context. ( W hat each interactant knows of the
patients defined status, along with his recognition of the others
awarenesses of his own definition the total picture as a so
ciologist might construct it an awareness context. It is the
context within which these people interact while taking cogni
zance of it. )
In part II of the book, we discussed four types of awareness
context of great im port for what goes on around the patient :
closed, suspicion, m utual pretense, and open awareness. We
assumed, for simplicitys sake, that only two interactants were
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FR O M SUBSTANTIVE TO FO R M A L TH EO R Y
In the preceding chapter we remarked that substantive
theory faithful to the empirical situation cannot be formulated
by merely applying a formal theory to the substantive area. A
substantive theory must be first formulated in order to see which
parts of diverse formal theories (originally developed for such
conceptual areas as deviance, status congruency, reference
groups, stigma, or hierarchy) can then further the substantive
formulation. A nd in its turn, substantive theory may help in
formulating formal theory. It may also contribute to the formu
lation of new formal theory grounded on careful comparative
research.
In developing our substantive theory of awareness contexts,
we utilized the strategy of choosing multiple comparison groups
to study (see A ppendix). Those groups were chosen by virtue
of the logic of our emerging analytical framework. The reader
will recall that we studied, simultaneously or in succession, a
series of hospital services designed to maximize differences and
similarities in the dying situation according to our emerging
substantive theory of awareness contexts. We suggested in our
opening chapter, and discussed in a recent article,1 that aware
ness contexts are not confined to the dying situation, but are
found generally throughout the full range of social interaction.
Consequently, if one wishes to develop a systematic formal
(o r general) theory of awareness contexts, he m ust analyze
data from m any substantive areas.
When advancing a substantive theory to a formal one, the
comparative analysis of groups is still the m ost powerful
method for formulating credible theory. The logic for dis
covering substantive theory which provided an efficient guide
to multiple groups in one substantive area also will provide
a guide for obtaining m ore data from many kinds of substantive
areas, in order to generate formal theory and to verify or
1 Glaser and Strauss, Awareness Contexts and Social Interaction,
American Sociological Review, 29 (October, 1964), pp. 669-679.
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5 Cf. Fred Reif and Anselm Strauss, The Impact o f Rapid Dis
covery Upon the Scientists Career, Social Problems, 1965.
ON TO F O R M A L TH EO R Y ?
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cit.
8 Ibid.; also see Ned Polskys description of hustler tactics in pool
halls: The Hustler, Social Problems, 12 (1964), pp. 3-15.
8 See M. Daltons description of organizational cheating in his Men
Who Manage (New York: Wiley, 1959); also Albert J. Reiss, Jr., The
Social Integration of Queers and Peers, Social Problems, 9 (1961),
pp. 102-120.
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APPENDIX
Methods of Collection
and Analysis of Data
In our book, we have attem pted to develop an integrated
theory about awareness contexts as they pertain to dying in
hospitals. A fter a preliminary stage of eleven months this aim
governed further collection and analysis of data. As noted in
C hapter 1, fieldwork data were gathered at a num ber of hospitals
in the Bay area of San Francisco over a period of three years.
Fieldwork procedures are well known to sociologists, but the
health professionals may be less acquainted with them. We shall,
therefore, write this appendix with both audiences in mind,
emphasizing especially the features of field m ethod which make
it extremely appropriate for developing integrated theory about
a substantive topic like dying. 1 In presenting our views, we
shall give information about what we did and how we did it,
and at the same time we shall give a more general commentary
on the characteristics of a credible and pragmatically useful
substantive theory.
First, we should note that our concept of awareness
context was foreshadowed by personal experiences of both
authors. Five years before the study began, Strauss participated
in what was at first a closed and then a mutual pretense aware1 For extended discussions, from which this Appendix is drawn, of
discovering and developing substantive theory through the collection
and analysis of qualitative data, see Barney G. Glaser and Anselm L.
Strauss, Discovery of Substantive Theory: A Basic Strategy Under
lying Qualitative Analysis, American Behavioral Scientist, 8 (1965),
pp. 5-12;.and Barney G. Glaser, The Constant Comparative Method of
Qualitative Analysis, Social Problems, 12 (1965), pp. 436-45. Extensive
citation of related source materials on qualitative analysis may be found
in these papers. See also the remarks on method in the Preface.
286
287
288
APPENDIX
289
290
APPENDIX
291
292
APPENDIX
293
Index
Abstract models: mathematical system,
282; equilibrium, 282
Acceptable style of dying, 86, 89-93,
103, 105; see also Appropriate,
Behavior, Improper conduct, Proper
conduct
Accepting death, 3, 62, 111, 121, 126,
127-132, 133; not accepting, 5
Access variables, 271-272
Accident patients, 48, 83, 170
Accountable, 5, 169
Acknowledgment: of awareness, lOfn,
79, 134, 198; not pretense, lOfn; pre
tense, lOfn, 11; see also Awareness
context
Action, 11, 13, 18, 34, 52, 54, 62, 68,
70, 74, 79, 81, 102, 104, 120, 181,
182, 186, 196, 200; see also Behavior,
Improper conduct, Proper conduct,
Response
Acute disease, 7
Addict, 210, 279
Admission of truth, 40
Age: nurse-patient same age, 38, 239;
see also Child, Geriatric patients,
Pediatric ward, Premature babies,
Young patient
Agreement, 10, 39; see also Consensus,
Disagreement
Aide, nurses, 59, 63, 143, 166, 207
Alertness: of nurse, 23, 40, 48; of
patient, 49
Alienation, 281
All right, 36
Allies, 32, 34, 52
Ambiguities, 36, 79-106, 176, 182, 279
Analytic theory, 263, 265, 291
Anger, 57, 88, 91, 92, 106, 110, 161,
234
Announcement, 45, 53, 54, 55, 94, 108,
124, 149, 151, 152, 153, 154, 168,
170, 176, 196, 248, 249; see also
Disclosure, Formal declaration
Anxiety, 55, 100, 126, 142, 145, 229
Apathy, 89, 91
Appropriate, 80, 82, 93, 149
Approval, 103
Asia, 31, 46, 85, 162fn
Ask your physician, 36, 57, 241
Assessment, 55, 95
Assessment management, 34-39, 41
Babies, 29
Back regions, 242fn
Badly, taking death, 45, 96
Bargain, 94, 96
Bates, Alan P., 161fn
Be brave, 121
Becker, Howard S., 4fn, 19fn, 178fn
Behavior, 39, 63, 82, 83, 84, 85, 86,
87, 88, 91, 92, 96, 107, 175, 217,
226, 243; see also Action, Crying,
Improper conduct, Proper conduct,
Response
Bensman, I., 66fn
Betrayed, feels, 46
Biderman, Albert, 63fn
Biography, fictional, 32-34, 38
Blauner, Robert, 281, 281fn
Blessing he died, 85, 215, 216; see
also Collective mood
Blumer, Herbert, 14fn, 260fn, 263fn
Body changes, 48, 165, 168, 233; see
also Deterioration
Breakdown, 147, 150, 163, 171, 172,
174, 184, 222, 240, 248, 255
Breaking through, 91
Bucher, Rue, 14fn
295
296
Cant talk, 213-214
Cardiac patient, 44, 48, 98, 134, 154fn
Carpenter, K. M., 165fn
Case, 185-188, 189, 195, 201
Catch on, 48
Catholic: hospital, 20, 64, 78, 171, 201,
243; patient, 39fn, 248; sacrament,
39fn
Caudill, William, 33fn
Censor, 37
Ceremonies, 59, 90, 104
Certain suspicion, 48, 55
Certain to die on time, 24, 25
Certainty of death, 18, 47, 55, 89; see
also Death expectations
Change, 15, 25, 32, 49, 60-61, 75, 76,
80, 89, 93, 103, 111, 122, 127, 135,
139, 155, 179, 196-203, 204, 205,
206, 217; see also Social change,
Transitions of awareness
Chaplain, 21, 25, 61, 70, 75, 91, 96, 97,
98, 103, 121, 127, 143, 147, 171,
172, 212, 214, 235, 243, 247, 248
Charity Hospital, 166
Charts, medical, 53, 55, 222
Chattering, 54, 57
Cheerful, 57, 86, 89, 125, 141, 207, 245
Child, 33, 65, 82, 100, 108, 137, 188,
191, 237, 241, 254
Chinese, 81
Chronic disease, 7, 22, 48
Cicourel, Aaron, 260fn
City of Hope Hospital, 166
Claim, 58, 59
Clinical experience, 30
Closed awareness, 10, 11, 29-46, 48, 49,
56, 59, 60, 64, 67, 80, 105, 111, 132,
134, 137, 139, 144, 153, 154fn, 155,
157, 158, 176, 181, 182, 186, 190,
199, 207, 210, 216, 217, 240, 242,
243, 269, 272, 283, 286, 287; see also
Awareness context, Transitions of
awareness
Closed suspicion, 47, 55, 61, 241; see
also Suspicion awareness
Cloward, Richard, 262fn
Coaching, 40, 91, 92
Coax, 91, 148
Cobb, Beatrix, 131fn
Coding, 288
Cohen, Albert, 262fn
Coleman, James, 178fn
Collaborate, 141, 144, 197
Collection, methods, 286-293
Collective mood, 190, 204, 208, 215,
216, 217, 224, 226, 227, 229, 234,
236, 244-246, 248, 255; see also
Accepting death, Forgetting, Sadness
AWARENESS OF DYING
In d ex
297
Davis, Fred, 13, 19fn, 26fn, 41fn,
132fn, 150, 172fn, 182fn, 245fn
Death: long term, 41, 136, 137, 138,
170; open, 43, 76; short term, 137;
unexpected, 26, 44, 151, 152, 168,
177, 200, 250-255; see also Linger
ing, Shock, Surprise
Death expectations, 16-28, 58, 79, 80,
93, 102, 125, 171, 180, 188, 206,
220, 250, 255; certain death (known
time), 19, 24, 82, 123, 151, 170, 173,
227, 287; certain death (unknown
time), 19, 24, 168, 169, 179, 185,
188, 190, 191, 194, 235-246; chang
ing, 23-26, 147, 148; uncertain death
(known time question resolved), 19,
25, 230; uncertain death (unknown
time), 19, 25, 153, 177, 179, 227234; see also Certainty of death
Death sentence, 154
Death talker, 242
Death watch, 158, 246-248
Decision making, 166, 182, 191, 197,
199; see also Disclosure
Deduction, 261, 282
Defensive, 47
Definition of dying, 9, 10, 11, 17, 51,
82; nurses', 23; patients, 23; social,
16-28
DeGramont, Sanche, 52fn
Degree: of awareness, lOfn; convinced,
18; of preparation, 167-174; of sus
picion, lOfn, 11, 60; of unawareness,
lOfn
Demand, schedule of medication, 211,
212, 213
Deny, 56, 59, 60, 63, 121, 126, 127,
132-135, 171, 174, 208
Depressed, 94, 121, 126, 135, 186, 245
Deserves to die, 82, 83, 110
Deterioration, physical, 75, 79, 85, 101,
102, 103, 105, 184, 198, 213, 221;
see also Body changes
Dewey, John, 259fn-260fn, 273
Diagnosis, 4, 7, 9, 18, 19, 20, 112, 148,
177
Died without knowing, 44
Diet, 41, 87, 134, 184, 204
Difficult patient, 85; see also Noncooperative
Dignity, 80, 86, 103
Direct disclosure, 20, 22, 30, 31, 127135, 151; see also Announcement,
Disclosure
Dirty work, 148
Disadvantage, 103
Disagreement, 9, 10, 86, 89, 195, 221,
222, 223; see also Conflict
298
Disapproval, 81, 84, 93
Disclosure, 5, 6, 12, 19, 22, 26, 30, 35,
41, 42, 59, 119-135, 145, 146, 150,
193, 269; decision for, 6, 39, 42, 48,
166; doctor's, 19, 20, 30, 42, 48, 50,
139, 143, 147, 179; family, 31, 42,
167, 196; gentle, 125, 126, 148, 151,
168, 176; guard against, 29, 31, 32,
35, 36, 41, 44, 48, 62, 78, 101, 110,
243; nurses, 19, 41, 42, 151, 256;
sharp, 125, 126, 150, 152, 153, 176;
unwitting, 37, 39, 40, 158; when, 6,
112; see also Announcement
Discounting, 35, 107-118, 200-203
Divert, 37
Division of labor, 63, 204, 206, 242,
243
Do something care, 186-188
Doing all we can, 149, 188, 196, 231
Doubt, 33, 195, 217
Drift routes, 164, 233
Drowned out, 159
Dulles, Allen, 52fn
Dumping ground, 178
Dying patient, 82, 84, 85, 87, 88, 89,
92, 94, 132, 139, 146, 151, 155, 160,
165, 166, 172, 177, 178, 188, 197,
210, 226, 230, 239
Education, 146
Ehrlich, Danuta, 14fn
Elicit, 51, 53, 54, 95
Emergency: conditions, 146, 165, 200;
measures, 112, 196, 218, 221
Emergency ward, 18, 25, 39, 83, 139,
152, 154, 164, 170, 230
Emotional care, 143, 149, 172, 210
Emotional distance, 46; see also Avoid
ance, Contact
Empathy, 90, 104
Equipment, 186, 190, 191, 195, 197,
200, 201, 202, 219, 220, 230, 244
Ethnic status, 146
Etzioni, Amitai, !22fn
Europe, 85
Euthanasia, 3, 209, 222
Expert testimony, 4, 159, 195
Extended kin, 31
Facial expression, 33, 37, 39, 42, 56,
71, 142, 237
Facing, 82, 86, 87, 88, 103, 104
Failure to discount, 113-115; see also
Discounting
Family, 4, 6, 8, 10, 11, 20, 21, 24, 25,
42, 43, 44, 46, 49, 56, 62, 70, 72,
73, 75, 76, 90, 92, 93, 95, 96, 97,
AWARENESS OF DYING
Index
Goals, 176, 177, 179, 188, 190, 193,
194, 195-203, 204, 205, 206, 208,
215, 218, 225, 228, 235; see also
Comfort, Recovery, Save the patient
Go-between, 52
Goffman, Erving, 9, 13, 14, 14fn, 29,
29fn, 52, 108, 122fn, 161fn, 219fn,
242fn, 278fn, 282, 283
Going fast, 21
Good will comfort, 206-208, 238
Goudeket, Maurice, 104fn
Gouldner, Alvin, 66fn, 216fn, 262fn,
264fn, 271fn
Gouldner, Helen, 66fn
Gracefully, 225, 245
Gracelessly, 44, 62, 101, 105, 180
Grand theorizing, 282
Grief, 44, 139, 141, 168, 169, 171, 172,
173-174, 184, 199
Griffin, John, 17, 278
Guilt, 173, 237, 245, 250
Gunther, John, 74fn, 131fn
Hagstrom, Warren O., 178fn
Handle, 45, 63, 82, 135, 162, 167, 168,
196, 212, 242, 243, 248, 255, 287
Hard, taking death, 45
Helpers of the family, 171-172
Helplessness, 191, 202, 214, 236, 238,
247
Heroics, 25, 111, 159, 178, 197, 198,
200, 201, 219
Hint, 42, 48, 53, 59, 94; see abo
Disclosure
Hobbes, Thomas, 14
Hope, 24, 108, 168, 169, 170, 186, 187,
190, 192, 212, 229; lose all, 121, 122;
none, 24, 84, 126, 131, 177, 186, 200,
201, 223, 244, 287
Hospital, county, 45, 48, 78, 81, 164,
187, 289fn
Hospital, private, 24
Hospital administrators, 24, 198
Hospital milieu, 54
Hospital organization, 8, 18, 19, 23fn,
31, 39, 49, 50, 57, 64, 78, 172, 212,
271,,287
Hospital stay, 21, 41, 49, 50, 54, 84,
166, 182
Hostile, 88, 91, 156
Hughes, Evqrett C., 4fn, 19fn, 148fn,
178fn
Icheiser, G., 13
Ideal, medical, 201, 202, 215, 216, 219,
225
Identification, 38
299
Identity, 13, professional 59
Ideology, 30, 64, 99, 100
Illness, 82, 84, 133, 170, 239
Imminent death, 38, 64, 95, 102, 113,
126, 192, 196, 248
Impatience, 57
Impending death, 4, 5, 11, 18, 20, 26,
30, 31, 32, 34, 38, 42, 50, 55, 67,
70, 75, 76, 79, 82, 98, 101, 103, 107,
109, 120, 127, 132, 133, 134, 135,
141, 147, 151, 154, 155, 166, 167,
174, 189, 196, 225, 240, 251, 256
Improper conduct, 83, 84, 85, 86, 96;
see also Action, Behavior, Proper
conduct
Inaccessibility of physician, 41, 45; see
also Avoidance, Contact
Indian, 81
Indicators, 53, 55; of pain, 213; see
also Cues, Signs
Induction, 261, 267
Ineptness, 5
Information, 49, 50-53, 124, 136, 137,
138, 142, 143, 145, 153, 155, 159,
174-176, 197, 204, 232, 251; see abo
Disclosure
Informer, 52
Inquiry tactics, 23-55, 57; see abo
Questions, Tactics
Insiders, 8, 9, 51, 277
Insight, 87
Intense work, 230-233
Intensive-care ward, 25, 48, 49, 54, 64,
137, 141, 142, 144, 164, 178, 201,
219, 228, 230, 231, 249
Intensive living, 131, 132
Interactants, 16, 274, 277
Interactional theories, 282-285
Interesting case, 185-186
Interpretation, 35, 36, 54, 60, 133, 233,
241
Interruption of life by illness, 43
Interviewing, 8, 266
Intrusion, 38, 73
Invalidate, 11
Invisible act, 198, 199, 202, 210, 216,
222, 236
Invisible system, 202, 216
Involvement, 37, 78, 160, 174, 178, 200,
206, 218, 219, 226, 227, 228,
229, 231, 232, 235, 236, 237, 238,
239, 243, 244, 249, 250, 251, 252,
254, 255
Isolate, 41, 132, 134, 233; see abo
Avoidance, Contact
Jaco, E. Gartly, 126fn, 131fn
Japan, 49, 81
300
AWARENESS OF DYING
Index
301
302
AWARENESS OF DYING
Procedures, 35, 41, 48, 50fn, 54, 56, Reiss, Albert J., 283fn
Reissman, Leonard, 165fn
94, 95
Rejection, 93, 94, 98, 174
Process, 3, 11, 17, 227
Relative; role of patient, 164-167, 236;
Professional ethics, 6, 143, 148, 151,
role of worker, 164-167, 236; see
222
also Family, Visitor
Prognosis, 7, 18, 19, 20, 24, 25, 42,
Religion, 146; see also Chaplain,
138
Spiritual care
Progression of disease, 21, 26, 36, 147
Prolong life, 82, 84, 99, 104, 159, 166, Repetitive interaction, 15
Report, 4
179, 180, 182, 185, 186, 190, 191,
193, 194-203, 205, 206, 215, 216, Repress, 80
Reprieve, 170, 177; short term, 24, 127,
219, 220, 223, 225
138
Promise, 97, 98
Reprimand, 90, 91
Proper conduct, 82, 84, 85, 88, 90,
102, 103, 104, 105; see also Action, Reproach, 89
Research, 39, 43, 105, 120, 131, 145,
Appropriate, Behavior, Improper
170, 171, 188-193, 194, 198, 201,
conduct
213, 215, 236
Protection, 46, 63, 70
Resigned, 45
Psychiatrist, 31, 86, 91, 243
Resources, 51, 57, 60
Psychological aspects, 4, 5, 50, 58, 62,
Response, 122, 123, 125, 126, 130, 242;
75, 78, 83, 99, 120, 127, 166
see also Reactions
Public Health Service, 287
Pull away, 256, see also Avoidance Responsible, 82, 130, 141, 166, 197,
199, 204, 223, 248
Purposeful, 61
Rest, 156, 167
Retrogress, 22, 32, 40, 41, 75
Qualitative facts, 266, 292; diverse, 266 Revealing, 53, 56, 142, 145, 149, 157;
see also Disclosure
Quantitative facts, 265, 292, 293
Questions, 5, 7, 18, 32, 39, 51, 53, 58, Review life, 43, 104, 127, 157; see also
Prepared for death
100, 127, 132, 133, 144, 174, 175,
Reward, 178, 205
176, 232, 241, 242
Riesman, David, 282
Quint, Jeanne C., 4fn, 5fn, 57fn, 58fn,
Rights, 58, 59, 175, 192
129fn, 216fn
Rituals, 42, 59, 64-78, 85, 106
Rohrer, John H., 165fn
Role, 71, 86, 140, 159, 164-167
Race, 16, 17, 81, 84
Role switching, 143, 241, 243, 247;
Rapport, 146
see also Ask your physician"
Ratio; certain/uncertain death, 178179, 228; insiders/outsiders, 279; Rose, Arnold, 14fn
Rotation of patient, 136
patient-personnel, 46
Roth, Julius A., 19fn, 23fn, 33fn,
Ratner, Joseph, 273fn
132fn, 240fn
Reach, 126
Reactions, 38, 63, 81, 102, 103, 114, Rough patient, 63
Routine work, 45, 76, 94, 162, 164,
122, 123, 205
167, 174, 185, 207, 237, 238
Reading signs, 19, 54
Rules, 15, 32, 57, 67, 70, 72, 73, 78,
"Really knows, 47, 50
86, 114, 122, 135, 139, 155, 156,
Reassure, 36, 41, 42, 48
157, 158, 175, 199, 220, 221, 244,
Reciprocal, 82; isolation, 132, 134
285fn; invoked, 158, 161, 167;
Recognition, 10, 11, 48, 49, 50, 63,
relaxed, 155, 156, 157, 167; see also
79, 101, 102, 224, 225
Privileges
Recovery, 178, 179, 182, 186, 188, 190,
191, 194, 196, 197, 200, 201, 202, Runaround, 57, 62
204, 205, 206, 228, 229, 233, 234,
252, 253; see also Goals, No-re
Sabshin, Melvin, 14fn
covery problem
Sadness, 37, 174; see also Collective
Rehabilitation, 41
mood
Rehearsal, 80, 239
Sanction, 236
Reif, Fred, 280fn
Index
Save the patient, 176, 177, 178, 186,
188, 196, 201, 202, 215, 216, 228,
230, 231, 234, 244, 245, 252
Scenes, 73, 88, 91, 105, 139, 150, 151,
152, 158-161, 163, 186, 196, 212,
232, 236; see also Status forcing
Schatzman, Leonard, 14fn
Schedule, 94, 211, 212
Scold, 90, 91
Screaming, 88, 102, 208
Screening measures, 178
Secret, 29, 31, 35, 37, 52, 57, 79, 141,
145
Sedation, 21, 40, 75, 126, 159, 166, 182,
184, 204, 208, 210, 211, 212, 213,
233, 236, 238, 247; tactics of, 22,
40, 102, 213, 214, 221-223; see also
Medication
Selective listening, 240
Self, 16, 89
Send the patient home, 181-184
Senile, 42, 109
Senselessly, 85, 215, 219, 255
Senses, 52, 53
Sensitive, 172, 174
Sensitizing theory, 263, 265, 291
Sentient, 9, 42, 85, 94, 108, 115, 182
Sentimental, 226, 227, 228, 245, 249
Serene, 78
Settle affairs, 168, 169, 171, 236, 244;
social, 127; financial, 127, 128; see
also Plan, Prepared for death
Shadow, 51, 52
Sheff, Thomas J., 120
Sherif, M 59fn
Shift, changes, 40, 49, 228, 229
Shniedman, Edwin S., 129fn
Shock, 26, 44, 50, 152, 182, 197, 248,
251, 252, 254; see also Death, un
expected
Shopping around, 87
Signal, 42, 65, 69, 74, 76, 91, 134, 149,
243; see also Flash cues
Signs, 12, 13, 30, 48, 51, 52, 55, 277,
278, 279
Si'ence, 39, 47, 53, 54, 59, 62, 64, 75,
78, 91, 102, 125
Simmel, Georg, 13, 282
Situational discounting, 111-113; see
also Discounting
Skin, color, 13, 16, 17, 277, 278
Slips, 54
Snow a patient under, 40, 102, 213,
214
Sociability shield, 36
Social change, 14
Social consequences, 3, 5
Social definition, 16-28
303
Social interaction, 7, 8, 9, 10, 14, 15,
16, 49, 58, 59, 60, 63, 64, 65,
73, 75, 82, 90, 94, 100, 108, 121,
143, 145, 156, 158, 159, 160, 167,
179, 180, 183, 206, 207, 209, 269,
274-285
Social issues, 6
Social loss, 38, 130, 219, 228, 229,
232, 237, 238, 244, 247, 250; actual,
38; potential, 38
Social order, 13, 14
Social-psychological dimensions, 12
Social regulations, 14, 15
Social structure, 11, 13, 271, 283, 284,
285, 289
Social workers, 21, 121, 127, 128, 130,
133, 134, 135, 143, 147, 153, 171,
172, 183, 214, 235, 243
Socially alive, 109, 110
Socially dead, 109, 110, 215, 237, 255;
see also Comatose, Premature babies
Socioeconomic status, 81; high, 57, 123;
low, 57, 64, 84, 123, 171
Sociological research, 282-285
Space, 37, 56, 111, 153, 158; arrange
ment of, 57, 154; management of,
162-164
Spencer, 282
Spiritual care 99, 128; see also Chaplain
Spotter, 52
Staff rotation, 40
Stakes, 12, 111, 190, 277, 279
Status, 9, 13, 16, 23, 24, 30, 32
47, 48, 53, 54, 68, 82, 122, 145,
148, 154, 207, 217, 218, 277, 278;
professional, 57, 58, 59
Status forcing, 158-161, 163, 173, 212,
217, 235
Status passage, 24
Stewart, J. M., 165fn
Stinchcombe, Arthur, 161fn
Strain, 45, 59, 62, 88, 99, 105, 149,
151, 164, 172, 173, 184, 239, 243fn,
246, 247, 248
Strategies, 226, 227, 230, 232, 233, 235,
236, 237, 238, 240, 241, 242, 243,
246, 250, 251, 255, 256, 269;
defense, 227, 228
Strauss, Anselm L., 4fn, 5fn, lOfn,
14fn, 19fn, 24fn, 29fn, 33fn, 38fn,
59fn, 130fn, 158fn, 178fn, 216fn,
219fn, 224fn, 228fn, 276fn, 277fn,
280fn, 283fn, 285fn, 286, 286fn
Stress, 9, 25, 105, 130, 138, 164, 182,
185; 199, 225, 242, 243fn
Structure, 63, 85, 161fn, 181; condi
tions, 29-32, 46, 48, 49, 67, 79, 220,
223, 226, 279, 284, 285fn, 289
304
Substantive area, 259-273, 275, 276,
281
Substantive theory, 259-273, 275, 276,
280, 282, 283, 284, 286, 288, 289,
290, 293
Suicide, 83, 84, 85, 93, 101, 102, 110,
120, 121, 129, 132, 186, 193, 210,
212, 223-225, 251, 252, 254
Support, 43, 60, 120, 143, 149, 164,
172, 197, 231, 234, 244, 245
Surgery, 97, 104, 177, 233; patients,
54, 125; see also Operation
Surprise, 26, 44, 150, 151, 152, 168,
170, 252, 253, 254; see also Death,
unexpected
Suspicion awareness, 11, 32, 33, 34, 35,
36, 38, 39, 40, 42, 45, 47-63, 64,
67, 90fn, 100, 101, 111, 139, 151,
154, 155, 157, 158, 168, 169, 180,
183, 240, 243
Suspicions, 47, 79, 108, 181, 182, 186,
229, 246; negate, 47; unfounded, 60;
verify, 47, 50, 54, 169, 233
Sympathy, 52, 71, 72, 75, 83, 85, 92,
95, 135, 149, 171, 174, 224, 245
Symptoms, 40, 41, 42, 48, 49, 50, 53,
73, 194, 229, 233; see also Cues,
Signs
System, 51, 53
Taboo, 3, 184
Tactics, 8, 11, 13, 15, 26, 36, 41,
51, 54, 63, 77, 91, 94, 102, 105,
123, 125, 140, 142, 145, 147, 149,
153, 163, 166, 167, 209, 210, 211,
253, 269, 279, 283; avoidance, 154;
confirmation seeking, 56; patient,
212, 213; staff, 55-58, 90, 137, 143,
144, 155, 159, 160, 161, 174, 175,
225, 238; see also Strategies
Take, 61, 105, 119, 141, 154fn, 183
Talk, 3, 4, 5, 11, 37, 38, 41,
42, 44, 50, 57, 68, 72, 73, 78,
84, 91, 95, 98, 103, 104, 107, 130,
148, 214, 233-234, 238, 240-244;
of dying, 41, 45, 58, 59, 67, 69, 105;
see also Communication, Conver
sation, Disclosure
Task, 148, 160fn, 161, 162, 165
Team, 12, 34, 51, 52, 53, 57, 78,
161fn, 165, 173, 246
Technical care, 4, 5, 6, 97
Teenagers, 32, 52, 92
Temporary illness, 43
Terminality, 4, 5, 7, 8, 12, 17, 20,
26, 32,
33, 38, 40, 41, 43, 45,
48, 49,
50, 53, 54, 55, 58, 61,
AWARENESS OF DYING
Index
Visibility, 219
Visiting, 155-167, 173
Visiting attendant, 166; see also
Relative
Visiting nurses, 92
Visitor, troublesome, 156; see also
Family
Waiting room, 159, 163, 164, 182, 232,
233, 235
Ward clerk, 171, 235
We all have to go sometime, 36, 233
Weber, Max, 9, 283
Weissberg, Alexander, 66fn
303
Wertenbaker, Lael, 87fn, 93fn, 104fn,
113fn, 129fn, 162fn
Wilson, M-, 59fn
Wish to die, 80
Withdrawal, 89, 92, 126, 186, 192, 208,
240, 245
Work schedules, 21, 167
Work with," 78
Young patient, 155, 219, 228, 287, 247
Zetterberg, Hans L., 261fn, 262fn,
263fn, 265fn, 266fn, 267fn, 268fn