JOURNAL OF COMMUNICATION DISORDERS 12 (1979), 495-502 495

UNDERSTANDING DEATH, DYING, AND THE

CRITICALLY ILL: A CONCERN FOR
SPEECH-LANGUAGE PATHOLOGISTS
ROBERT E. POTTER and CARL R. SCHNEIDERMAN
Communication Disorders Program. Washington State Universi@. Pullman, WA 99164

GREER M. GIBSON,
Speech-Language Pathologist, Northwest Hospital, Seattle, WA 99120

The purpose of this article is to familiarize the speechlanguage pathologist with the behaviors that
critically and terminally ill persons demonstrate. To work effectively with these groups of individu-
als, it appears essential that the clinician know the dynamics of the psychological stages associated
with physical crisis, disability, death, and dying. This information is becoming more relevant to the
speech-language pathologist, particularly as his/her role as a member of a rehabilitation team provid-
ing direct services to the aged expands.

As speechlanguage pathologists increase their services to the critically ill and

geriatric population, it appears necessary that they become familiar with the
psychological stages associated with physical crisis, disability, death, and dying.
Medical technology has prolonged human life and, in a way, has increased the
fear of death and the number of emotional problems surrounding it; conse-
quently, there has been imposed a great need for understanding the problems of
confronting death and dying (Kubler-Ross, 1969). Ailments often associated
with aging, namely cancer and CNS deficit, are regularly accompanied by com-
munication disorders. Therefore, speech-language pathologists will find them-
selves more involved in the activities of the rehabilitative team and more respon-
sible for the recognition and understanding of the psychological aspects of seri-
ous illness, death, and dying. In fact, the speech-language pathologist may be
the one expert on a rehabilitation team who has the relevant training to judge if
there is a disparity among a patient’s abilities to comprehend, express, or process
information. Thus, the clinician may be in the best position to interpret the
patient’s apparent communicative and intellectual status to the other health-care
professionals and to the patient’s family, whose reaction to catastrophic illness
weighs heavily in the rehabilitative process. However, more than acting as an
interpreter, the speech-language pathologist should also function as an instructor
who provides a model for the most effective ways to communicate with the

Address correspondence to: Robert E. Potter, Professor and Director, Communication Disorders
Program, Washington State University, Daggy Hall 218, Pullman, WA 99164.

e Elsevier North Holland, Inc., 1979 0021-9924/79/06495-08$01.75

496 R.E. POTTER, C.R. SCHNEIDERMAN, and G.M. GIBSON

patient. The clinician can be useful in conveying information about the best
sensory channel with which to stimulate the patient, the level of abstractness
possible for the patient to comprehend, and the realistic expectations for his/her
improved comprehension and expression. These data can provide a strong basis
for establishing communication strategy among the patient, family, and clinician
about the crisis.
The position espoused by Toffler (1970)) that health-care professionals may
overlook many of the real adaptive problems of their clients because education
for specialization has been based primarily on what people are, rather than on
what they will become, appears to be accruing more significance for speech-
language pathologists as they increase their therapy activities with the aged.
Between now and 1990, the second largest segment of the census will include
approximately 30,000,OOO individuals 65 yr of age and over (Kiplinger, 1976;
Brotman, 1977). It is this retirement population that experiences a significant
increase in degenerative and catastrophic illnesses which have a limited prog-
nosis for recovery, and which are often concomitant with speech and language
deficits. Therefore, it seems certain that speech-language pathologists will find
themselves with an increased responsibility for the recognition and understanding
of thanantology and their clients’ emotional reactions to serious illness.
To actively participate as a rehabilitative team member, speech-language
pathologists must be cognizant of a patient’s emotional state which can reflect a
continuum of reactions beginning from the initial diagnosis to recovery from the
crisis or to death. Beverley (1976, p. 121) articulates the reaction as follows:

Sp.cific concerns and attitudes expressed by terminally ill patients and persons
wno have recovered from a critical illness include resentment at the loss of
control, lowered self-esteem (due to distress over their body image and/or to the
lack of respect shown toward their likes and dislikes, thoughts and preferences);
disruptions in meaningful relationships; lack of communication, and being
treated as an object rather than a person (such as when staff or family members
talk about rather than to the patient in his presence).

Shock

After the physician imparts a clinical diagnosis of a critical illness, a patient

typically experiences an initial state of shock (Kubler-Ross, 1969; Shonts, 1965).
During this period, the perception of reality of the diagnosis may appear fairly
lucid and objective, and the person may demonstrate, with little emotion, the
appearance of solid comprehension of the problem; however, the reaction is on
the automatic level and is not the result of a rational cognitive process (Shonts,
1965). The shock phase appears to enter only long enough for the individual to
develop a defense mechanism. Indeed, this period may be marked by indif-
ference or mild euphoria. In the case of a diagnosed cancer of the larynx, the
 DEATH, DYING, AND THE CRITICALLY ILL 497

patient often does not appreciate the extent of disability until after the operation,
no matter how well prepared he/she was preoperatively; this reported apparent
lack of concern demonstrated by a patient may reflect a lack of comprehension of
the disability (Rush, 1974). However, definite stages appear to emerge with
crisis and these are reflected not only by individuals but by their family; Lin-
demann (1944) reported five stages (somatic distress, preoccupation with the
image of the deceased, guilt, hostility, and loss of conduct patterns) occurring
with the “survivors” of the Coconut Grove fire. More recently, Kubler-Ross
( 1969) has organized her observations of grieving patients into specific stages. In
general, these stages can be categorized as: 1) denial and isolation; 2) anger; 3)
bargaining; 4) depression; and 5) acceptance. Although the stages appear to be
common, the degree of reaction is highly individualized.

Denial and Isolation

When the reality of the crisis diagnosis becomes overwhelming, denial and
isolation function as a buffer permitting the patient to adjust to the new problem.
Kubler-Ross (1969) indicates that the initial denial period is found when an
individual has learned of the critical condition through a medical source of
his/her own accord and is seeking a confirmation or rebuttal to the diagnosis. At
this point, he/she may go shopping for a diagnosis that will confirm the denial, or
in essence provide the news which the person wishes to hear. This behavior
frequently occurs when someone is issued the diagnosis in a state of unreadiness.
The denial may also be intermittent, and between episodes the reality may be
viewed in a depersonalized manner whereby the individual recognizes the crisis
but also isolates him or herself against its full import (Weisman and Hacket,
1967).

Anger

An individual’s inability to further deny presence of the crisis may precipitate

the stage identified as anger. The primary emotion experienced during this period
relates to “Why me?” (Kubler-Ross, 1969). In this episode, social controls are
broken down and the anger of the individual is displaced in all directions and to
anyone in the environment, including professionals and family members
(Kubler-Ross, 1969; Shonts, 1965). In the anger period there are feelings of
helplessness accompanied by anxiety, and it is hypothesized that the anger may
be the last loud cry that the individual is a living person and wants to be dealt
with in a humanistic manner (Kubler-Ross , 1969). It may also be the individual’s
way of saying, “I am still omnipotent and I rage because I could have done
something with my life” (Moses, 1976). It is important for the speechlanguage
pathologist to also understand that family members demonstrate the “Why me? ”
498 R.E. POTTER, C.R. SCHNEIDERMAN, and G.M. GIBSON

experience but with a different expression. It has been suggested that since the
“Why me?” cannot logically be internalized by family members it is directed
toward the client in a statement of “I don’t care if he/she dies” (Moses, 1976).

Bargaining

Bargaining is also a reaction to crisis, and although a less well-known

phenomenon than the other stages, it is equally helpful, even though it lasts for a
brief period (Kubler-Ross, 1969). The apparent rationale for bargaining is that if
I am pleasant rather than angry, perhaps I will gain a prize, a remission of the
crisis for good behavior (Shonts, 1965). There are three basic components to the
bargaining phase: 1) a prize for good behavior; 2) self-imposed deadline; and 3)
an unspoken promise not to ask for more. The promises are generally associated
with some feeling of guilt for past performance in life (Kubler-Ross, 1969). This
is best exemplified in the individual or in the family when an attempt is made to
bargain with God and/or science; viz., if you make me well I will devote myself
to the church or to a particular organization (Moses, 1976).

Depression

When an individual reaches the realization that denial, anger, and bargaining
have not eliminated the crisis, he/she may enter into depression. Suddenly, the
person is faced with the realization, “I’m not as omnipotent as I thought”
(Moses, 1976). There are two types of depression usually manifested: preparat-
ory and reactive. The latter, which develops from antecedent events such as the
ineffectiveness of bargaining, is typically expressed (Kubler-Ross, 1969)) and as
its presence becomes overwhelming, suicide may be contemplated and/or at-
tempted (Shonts, 1965). Preparatory depression appears primarily as a reaction
to future losses and may result in unrealistic thoughts with regard to future events
(Kubler-Ross, 1969; Shonts, 1965).

Acceptance

In the final stage of the sequence, the individual attains acceptance; in this
segment, anxiety decreases to the point that the person develops a more realistic
identity and sense of self-worth (Shonts, 1965). Acceptance is not to be mis-
construed as giving up or surrendering hope for happiness, but should be re-
garded as a peace of mind. Acceptance may be as Verwoerdt (1966) has
suggested, “. . . the patient’s one last gift to those around him in his struggle
with fate. His acceptance of death as an affirmation of life . . ” (p. 76). Simi-
larly, as Kubler-Ross (1969) indicates, the acceptance generally comes more
easily with an older person who has had the opportunity to lead a full life
 DEATH, DYING, AND THE CRITICALLY ILL 499

culminating in the attainment of specific goals. It is at this point, too, that family
members’ acceptance can aid the speech-language pathologist in the therapy
program and make the critically ill individual more comfortable in his/her envi-
ronment

Counseling and Direct Services

By understanding the emotional dynamics operating on the individual and the

family, speechlanguage pathologists may be able to greatly enhance their effec-
tiveness in counseling and in providing direct therapy services to the criticially ill
individual and his/her family. The speech-language pathologist has something
unique to offer to the communicative process itself. Realistically, the speech-
language pathology profession exists, in part, because many people, including
health-care workers, are uncomfortable in dealing with persons who do not
receive and express language normally. The discomfort manifests itself in a
variety of ways such as restriction of contact and withdrawal of support; “talking
for” and impatience with someone who is capable of some forms of self-expres-
sion; speaking to the patient in a style usually reserved for very young children;
and conversing in the presence of the patient as if he or she were inanimate or
absent. These actions serve to isolate the person, reduce his/her right to dignity,
and remove even the capable patient from the decision-making process. Further-
more, the patient can and often does become an object in the therapy paradigm
instead of a rehabilitative team member who should be allowed to participate to
whatever degree he/she is capable.
Families may also withdraw from the critically ill for a variety of factors, but
perhaps the paramount reason is lack of information. Ignorance usually invokes
an aura of fear when a person must deal with a seemingly incomprehensible
situation. The speech-language pathologist, by taking the role of educator, can
demonstrate the special effort needed to communicate with the patient and to
allow his/her family to assume an active role in the decision-making processes
concerned with rehabilitation. As noted by Benoliel (1974), the critically ill
person is often at the mercy of his/her family and the opportunities to deal openly
with the life-threatening aspects of the illness depend greatly on his/her status
relative to the change of position in the family.
Often the patient may experience a depersonalization process when not al-
lowed to function as co-manager during the convalescent period (Wright, 1960).
Beverley (1976) discusses this phenomenon as the “waiting vulture” syndrome.
The designation is used to explain what happens when family members embrace
anticipated loss too quickly, and no longer assume that a relationship is possible
with their loved one. The results may adversely affect the professional staff,
family, and the patient. To avoid this impediment to communication, the patient
must be treated, as nearly as possible, as before the critical illness and with
500 R.E. POTTER, C.R. SCHNEIDERMAN, and G.M. GIBSON

allowance for humor (Crawford, 1974) rather than with a sense of portentious-
ness.

Conclusion

It has been suggested that the way our society defines death leaves the indi-
vidual particularly vulnerable to anxieties and apprehensions about life’s final
transition (Beverley, 1976; Caughill, 1976; Kubler-Ross, 1969). This vulnerabil-
ity can also be generalized to critical illness and, depending upon individual
philosophical and/or religious values, the degree of impact can vary considerably
between persons. Trauma that occurs with relative suddenness and which perma-
nently alters, in a deleterious manner, the status and self-concept of an indi-
vidual, will most likely effect “grief” reactions. Theseexpressions will also be
felt in different degrees by many who come into contact with the traumatized
person. As speech-language pathologists recognize the various stage behaviors
demonstrated by critically and/or terminally ill patients and their families, they
can make direct intervention to facilitate the communication process or they can
make appropriate referrals to specific health-service personnel such as physi-
cians, psychologists, psychiatrists, social workers, and nurses, to minimize the
emotional discomforts and stress of those affected. Optimally, what our in-
volvement should establish most prominently with the participants is the concept
that we know it is difficult for them to communicate their logic and emotions
during this episode in their lives and that if they choose to enlist our specialized
professional assistance, we will do our best to facilitate the communicative
process. Perhaps one of the key impressions the clinician can convey to patients
and their families working their way through the stages to acceptance is “I
understand . . . ”

References

Benoliel, J. Q. (1974). The patient, death, and the family, found in The Patienf, Death, and the
Family. Charles Scribner’s & Sons: New York.
Beverly, E. V. (1976). Understanding and helping dying patients and their families. Geriarrics 3 1:
117,121-122, 127.
Blair, D. (1975). On widowhood. J. Geriatric Psychiatry 8: 29-40.
Brotman, H B ( 1977). Population projections. Gerontobgist 17: 203-209.
Caughill, R. S. (ed.) (1976). The Dying Patient: A Supportive Approach. Little, Brown: Boston.
Earle, A. M., Argondizzo, N. T.. and Kirtscher, A. H. (Eds.) (1976). The Nurse as Caregiver.
Columbia University Press: New York.
Feifel, H. (1977). New Meanings ofDeath. McGraw-Hill: New York.
Glaser, B. G., Strauss, A. L. (1968). Time for Dying. Aldine: dicago.
The Kiplinger Washington Letter, The Kiplinger Washington Editor, 1729 H Street NW,
Washington, D. C. Vols. 53, 52.
Kubler-Ross, E. (1969). On Death and Dying. MacMillan: New York.
 DEATH, DYING, AND THE CRITICALLY ILL 501

Lerer, B., Avni, J., Wiesel, D. (1976). Bad tidings and the hospitalized patient. Menf. Health Sot. 3:
205-211.
Levine, S , and Kahana, R., (Eds.) ( 1967). Psychodynamic Studies on Aging: Creativity, Reminisc-
ing, and Dying. International University Press: New York.
Lindemann, Erick (1944). Symptomalogy: Management of acute grief. Amer. J. of Psychiatry,
Boston.
Moses, K. (1976). Parent counseling in communicative disorders: an introduction to mourning
theory, presented at American Speech and Hearing Association Western Regional Conference,
May 26-29, 1976. Portland, Oregon.
Quint, J. C. (1967). The Nurse and the Dying Patient. MacMillan: New York.
Rush, B. F. (1974). A surgical oncologist’s observations. In Anticipatory Grief, Schoenberg et al.
@Is.). Columbia University Press: New York.
Schoenberg, B., Can, A. C., Kutschner, A. H., Peretz, D., and Goldberg, I. K., (eds.) (1974).
Anticipatory Grief, Columbia University Press: New York.
Shonts, P. (1965). Reactions to crisis. The Volta Rev. 67: X54-370.
Toffler, A. (1970). FutureShock. Random House: New York.
Troup, S. B., and Greene, W. A., (Eds.) (1974). The Patient, Death, and the Family. Charles
Scribner’s & Sons: New York.
Verwoerdt, A. (1966). Communicafion with the Fatally Ill. C. C. Thomas: Springfield, Illinois.
Weismann, A., and Hackett, T. (1967). Denial as a social act. In Psychodynamic Studies on Aging:
Creativity, Reminiscing, and Dying, International University Press.
Wright, B. (1960). Physical Disability-A Psychological Approach. Harper & Row: New York.