Psychotherapy with the Dying Person
no inflexible rules that do not contradict the principle that dying is
an individual matter, and therefore should be individualized.
Management is most appropriate when the therapist at the outset
projects his imagination into the future toward the "Omega Point" and
considers when, where, how, and with whom this inexorable death ought
to occur." A.D. Weisman (1)
Psychotherapy with dying patients shares many features with all other
psychotherapy. However, the unique status of the dying person presents
special problems for the mental health professional. Clearly, everyone
will die, and in this sense all therapy is done with patients of a
limited life span. The labeling of a person as a "dying patient",
identifies that person as belonging to a special category of humanity,
and creates profound changes in the emotional, social, and spiritual
climate of therapy. The dying person is one who is seen to be in a
life-threatening condition with relatively little remaining time rind
little or no hope of recovery. This unique existential position of the
dying person necessitates some adaptations of the typical
psychotherapeutic attitudes and strategies. The goals, structure, and
process of therapy must change to meet the special needs and
circumstances of the dying patient.
How does therapy with a dying person differ from "typical" therapy? There
are several features which distinguish it.
* First, therapy is
more time-limited and time-focused. The dimension of time takes on
special urgency with the dying patient. While many therapies are
time-limited, often they proceed as if time were an inexhaustible
resource. The brief remaining time for the dying patient intensifies
the therapy process, and accelerates it.
* Second, the goals
of therapy with dying patients are often more modest. Recognizing the
limits of possible change is an essential feature of therapy with the
dying. What can be accomplished is quite restricted by time,
disability, and other aspects of the patient's condition.
* Third, the
treatment of the dying patient often requires careful coordination
with a variety of medical, nursing, and pastoral professionals. The
physical condition, medical treatments, and institutional settings of
the patient complicate the practical and psychological context of
Elisabeth Kubler-Ross' seminal work, "On Death and Dying" (2), very
little systematic attention had been given to psychotherapy with dying patients. One important exception to this neglect was the
humanistic approach described by Bowers, Jackson, Knight, and LeShan in their book, "Counseling the Dying" (3). The prime
impetus, though, was certainly Kubler-Ross, who provided an integrated
theoretical and therapeutic perspective for use with the dying
patient. Following her lead, hundreds of books and articles
have appeared in the last decade. Reflecting the increased maturity of the field, there are presently many therapists and
researchers focusing on this population, and in addition several
scholarly journals which devote some attention to the care of the dying person. Psychotherapy is beginning to be
incorporated into the more general and growing field of
clinical thanatology, which is concerned with the overall care
and treatment of the dying person - mind, body, and spirit. (4, 5)
psychotherapies are divided into four main groups - psychodynamic,
humanistic, behavioral, and family therapy.
features of these therapies as used with all patients are preserved in
the treatment of the dying, but each has been modified somewhat to fit
the unique needs of dying persons.
The Psychodynamic Approach
psychodynamic approaches are primarily concerned with the emotional
conflicts and defense mechanisms of the individual. Special issues of
conflict and defense arise in the dying person, and this approach
addresses them in the hope of resolving the psychic crisis to the
fullest extent possible. Dying is the ultimate crisis of ego
development, and as such is associated with intense infra-psychic
turmoil. Psychoanalyst Erik Erickson labels the last stage of ego
development, "ego integrity versus despair", and identifies it with
the crisis provoked by the confrontation with one's mortality.
The fear of death may precipitate a breakdown of previously integrated
ego functioning, and result in an attitude of despair and disgust. (6)
In most people the
threat of death generates powerful defensive reactions, and although
these defenses provide some limited relief of emotional distress, in
the end they prohibit the person from effectively coping
with the death crisis. Common defenses which are found in the
dying person include denial, displacement, projection, and regression.
As Kubler-Ross pointed out, denial is a very typical reaction of the
dying person. The refusal to accept the reality of death makes it
impossible for people to prepare themselves and their families
adequately for it.
Through the displacement defense the
fear of dying is channeled into other, "substitute" fears. For
example, one may become preoccupied with anxiety about family members,
personal business, household jobs, or other matters, and, thus, obtain
partial release of one's death anxiety. The dying person's projection
defense typically expresses itself in hostility and resentment toward
others, e.g., doctors, nurses, and family. The person may irrationally
blame others for the illness, or accuse them of not doing enough to
cure or help. Regression in the dying person is often manifested in
increasingly immature, dependent, and occasionally self-threatening
behaviors and attitudes. An example is the extremely helpless,
"infantilized" position of the person who has completely given up and
merely waits for death.
A major goal of dynamic therapy with
the dying is to help the person recognize, confront, and replace the
defenses which run counter to an emotionally healthy attitude
toward death. In the process it may be necessary to try to work
through some long-standing problems and fixations which are
intensified by the death crisis. For instance, a patient with a
history of anxiety over separation from family members may be more
distressed over the issue of loss/separation than by other
death-related concerns. Dynamic therapy with dying patients is not
directed as much toward the goal of insight, as it is with others.
Time limits the course of therapy with the dying, and the goals are
therefore more short term changes; rather than long-term personality
change. The strategy of Kubler-Ross is a good model of a dynamic
approach to defenses and emotional conflicts in therapy with the
dying. (2, 7)
"On Death and Dying" provides many
wonderful examples of a therapeutic approach that begins by accepting
the defensive position of the patient, and then proceeds to work with
the patient to overcome the self-defeating results of those defenses.
Below is an example of one of Kubler-Ross' cases:
Mr. 0. was a successful businessman
dying of Hodgkin’s disease. During his stay in the hospital he behaved
like a tyrant with his family and the staff. He blamed his cancer on
his own "weakness" and claimed that "it was in his own hands to get up
and walk out of the hospital the moment he made up his mind to eat
more." His wife consulted with Dr. Ross for help in dealing with his
"We showed her - in the example of his
need to blame himself for 'his weakness' - that he had to be in
control of all situations and wondered if she could give him more of a
feeling of being in control, at a time when he had lost control of so
much of his environment. She did that by continuing her daily visits
but she telephoned him first, asking him each time for the most
convenient time and duration of the visit. As soon as it was up to him
to set the time and length of the visits, they became brief but
pleasant encounters. Also, she stopped giving him advice as to what to
eat and how often to get up, but rather rephrased it into statements
kike, “I bet only you can decide when to start eating this and that”.
He was able to eat again, but only after all staff and relatives
stopped telling him what to do”.
As Mr. O. began to regain a sense of
control over his environment and his activities, his anger, guilt, and
tyrannical behavior decreased, and his relationship with his family
Another significant concern which has
been addressed by the psychodynamic approach is countertransference,
the emotional reactions of the therapist. The therapist must be
particularly careful to avoid letting personal fears and conflicts
over death interfere with helping the patient. The three potential
negative results of countertransference are:
1) The therapist unwittingly supports
the patient's denial of death by avoiding the issue.
2) The therapist regresses to a
helpless position in doing therapy with the patient.
3) The therapist engages in an anxious
avoidance of the patient and his concerns.
In order to minimize the effects of
the therapist's own attitudes toward death on the therapy, the
therapist should explore and confront personal death attitudes before
initiating treatment. (8)
More than other approaches the
humanistic view of therapy clearly integrates a philosophy of human
nature in which death plays an essential role. Existentialism is a
philosophy which has had a significant effect on the humanistic
approach, and in this philosophy living the "good life" demand a
confrontation with the reality of death. Death awareness helps us to
clarify our values and purpose in life, and motivates us to live our
lives with fullness and meaning. Death is the absolute existential
threat, and it forces us to acknowledge the limit of our life plans
and face "nothingness". (9)
Humanistic therapy aims to help the
dying patient live as full a life as possible in the face of death.
Without giving false hope or optimism, the therapist attempts to
mobilize the patient's will to live, to encourage the expression and
growth of the self, and to facilitate the patient's self-actualization
(10, 11, 12). LeShan, an advocate of this approach, expresses his view
of humanistic therapy with the dying in the following remark:
"Help is really
needed in terms of how to live, not how to die." (10)
With the dying patient humanistic
therapy is more intensely focused than with others. According to
LeShan psychotherapy should "move strongly" with the dying patient. An
example of his approach is given in this dialogue.
Patient (P): "I'm afraid of my
cancer. I want to live
Therapist (T): "Why? Whose
life do you want to live?"
P: "I detest it! I've never lived my
own life. There was always so much to do at the moment. So much to
...I never got around to living my life."
T: "You never even were able to find
out what it was."
P: "That's why I drink. It makes
things look better. Not so dark."
T: "Maybe the better way would be to
find out what is your way of life and start living."
P: "How could I do that?"
T: "That's what we are trying
to do here." (10)
Feigenberg describes the main features
of his humanistic, "patient-centered" approach in the following way:
1) It emphasizes building a strong,
supportive, and empathic relationship with the client.
2) It allows the client to set the
pace of the treatment.
3) It enables the client to actively and positively participate in the
process of dying. (13)
The behavioral approach to therapy
relies on educating patients about more adequate coping skills to help
deal better with the death crisis. Impending death is a terribly
stressful situation, and it produces extreme emotional reactions like
anxiety and depression, which inhibit patients from living out the
remainder of their lives in a satisfactory way. The symptoms of the
dying patient are partially manageable through some standard
behavioral techniques. For example, relaxation training and
desensitization can help to alleviate excessive fear and tension.
Other self-management skills, like biofeedback and self-hypnosis, are
also useful in controlling the distressing emotions of the patient.
One example of a valuable behavior
therapy technique is "stress inoculation training". With the dying
patient this strategy may be used to help cope with the physical and
emotional aspects of pain. In this approach the patient is taught how
to employ cognitive and behavioral skills in preparing for pain and
managing pain. Some of the "self-statements" learned in this technique
for pain control are shown below.
Preparing for Pain:
it I have to do?"
"I can develop a plan to handle it."
"Just think about what I have to do."
Confronting and Managing Pain:
"I can meet the challenge."
"Just handle it one step at a time."
"Just relax, breathe deeply."
"Good, I did it."
"I handled that pretty well."
"I knew I could get through
A basic goal of behavior therapy is to
provide some Coping skills so that the patient can reduce discomfort
and gain a measure of control over life. The loss of control over
one's body, one's actions, and one's future which is experienced by
the dying patient can lead to emotional distress and to feelings of
helplessness and passivity. The acquisition of productive coping
skills will not only enable the patient to manage negative feelings
better, but can also improve self-esteem by providing a sense of
competence and self-efficacy.
The behavioral approach to therapy
tends to focus on specific and concrete symptoms. It does not directly
attend to the developmental and personality issues which are so
important in dynamic or humanistic approaches. The goal of the therapy
is primarily to relieve negative emotions and to enable the patient to
cope more effectively in the remaining time. (14, 15)
The impending death of a family member
places the entire family in a state of crisis. Death presents a
threatening situation for each member of the dying person's family.
The degree of disturbance in the family depends on many factors such
as the role of the dying member, the stage of development of the
family, and the quality of relationships among family members. A
family systems approach conceives of the entire family, not just the
dying person, as the recipient of therapy. This approach seeks to
provide the family unit the opportunity to learn to deal with the
tragedy. Some therapists will continue treatment beyond the death,
offering grief counseling for the survivors.
Though family therapy may be integrated
into therapies of various types, there are several issues on which
family therapists are more likely to focus. Lying patients often
experience a need to feel the closeness and support of their families
in facing the death crisis. In families where past conflicts have
interfered with relationships between the patient and others, family
therapy can facilitate more open and productive communication. This
can benefit all members concerned in terms of finding closure for
"unfinished business". The defenses of family members can make it very
difficult for the dying patient to confront death. It often happens
that family members share the defensive reactions of the dying person,
such as denial of the facts and displaced anger.
An advantage of the family approach to
therapy is that it offers an experience that may enable everyone to
accept the facts and to work together to enhance the quality of life
for the dying person. Families generally experience a range of intense
emotions regarding the dying patient, including anger, guilt, fear,
and depression. In family therapy members are encouraged to understand
and express these feelings in anticipation of the death of their loved
As she was in many other areas, Kubler-Ross
was a pioneer in involving families in the therapeutic process with
the dying. The case below, from Kubler-Ross (2), illustrates some
common emotional dynamics in families with a terminally ill member.
"I am reminded of an old woman who had
been hospitalized for several weeks and required extensive and
expensive nursing care in a private hospital...
Her daughter was torn between sending
her to a nursing home or keeping her in the hospital, where she
apparently wanted to stay. Her
son-in-law was angry at her for having used up their life
savings... When I visited the old woman she looked frightened and
weary. I asked her simply what she was so afraid of ... She was afraid
of 'being eaten up alive by the worms'. While I was catching my breath
and tried to understand the real meaning of this statement, her
daughter blurted out, 'If that's what's keeping you from dying, we can
burn you' by which she naturally meant that a cremation would prevent
her from having any contact with earthworms. All her suppressed anger
was in this statement."
Kubler-Ross encouraged the mother and
daughter to communicate honestly for the first time about their
individual concerns, and they were able to console each other and make
arrangements for the mother's cremation. The mother died the next day.
of the Dying Person
The best known theory of the dying process
is that of Kubler-Ross, who proposes that many dying people progress
through five stages of dying, described below:
1. Denial. Initially the reaction is "No!
Not me!” Though the denial is rarely complete, most people respond with
disbelief in the seriousness of their illness.
2. Anger. In this stage the dying person
expresses anger, resentment, and hostility at the "injustice" of dying,
and often projects these attitudes onto others.
3. Bargaining. The dying person tries to
"make deals" to prolong life, e.g., making promises to God.
4. Depression. Here the individual may
become overwhelmed with feelings of loss, hopelessness, shame and guilt,
and may experience "preparatory grief".
5. Acceptance. In the final stage one
comes to terms with death, not necessarily happily, but with a feeling of
readiness to meet it.
Some researchers have questioned the
generality of Kubler-Ross' five stages, pointing out that they do not
necessarily apply to all dying people and that the therapeutic
implications of the theory are not necessarily appropriate for everyone.
An alternate view of the "trajectory" of
the dying person is offered by the psychiatrist, Avery Weisman (5). He
believes that Kubler-Ross' theory describes some common reactions to loss,
rather than general stages of dying. Weisman proposes four very flexible
1. Existential Plight. The dying person
experiences an extreme emotional shock at the awareness of his/her own
2. Mitigation & Accommodation. The
individual attempts to resume a "normal" life after first learning of the
terminal nature of the illness.
3. Decline & Deterioration. When illness
and its treatment begin to take full control over one's life and normal
living is no longer possible, this stage begins.
4. Pre-Terminality & Terminality. This
final stage refers to the very end of life, when treatment is no longer
helpful and the "death watch" begins.
Whether they accept
stage theories or not, most researchers and practitioners recognize that
there are many common features in the emotional reactions of dying people.
The core emotions on which therapies focus include depression, anxiety,
and anger (17, 18, 19, 20).
Depression. Depression is perhaps the most typical
response of the dying person. Although they are not inevitable, feelings
of hopelessness and powerlessness pervade the experience of most dying
people. The physical impairments that result from terminal illnesses and
the restrictions on hospitalized patients only add to these feelings. The
mental and physical condition of the dying person fosters a sense of
alienation and withdrawal.
Patients may slowly
become estranged from family and friends, and they begin to disengage from
"normal" living at the point where death is the prognosis. Depression is
also associated with the loss of control over life events experienced by
the patient. As death nears it is easier to slip into a state of passive
resignation and despair. The potential of suicide is also a matter of
great concern. The demoralization, hopelessness, and physical pain of the
dying patient contribute to a greater risk for suicidal action. The
relatively high rates of suicide among the elderly may reflect depression
in this group because of the infirmities of old age.
For most people the thought of death provokes anxiety. In facing death
people typically experience a wide range of anxieties and related emotions
like fear, dread, and panic. An analysis of the anxiety of the dying
person identifies several central concerns. Surely, everyone confronts
death in a unique way dependent on one's individual needs, personality,
culture, and social situation, but the majority of dying persons
experience intense feelings of anxiety and associated emotional stress.
Some of the common elements of this anxiety are described below:
The physical condition of the patient is
certainly an obvious and significant source of anxiety. Pain, suffering,
and the physical debilitation of the terminally ill person contribute
significantly to insecurity, stress and anxiety. In addition terminally
ill patients whose medical treatments are painful or aversive, e.g.,
chemotherapy for cancer victims, may develop conditioned anxiety reactions
to the treatment setting and anticipatory anxiety regarding further
treatments. Anxiety and shame can also result from the physical changes
which occur in the dying person. The patient who insists "I don't want
anyone to see me like this!" may be expressing a fear of rejection by
others because of unacceptable bodily alterations from the illness.
* The social dimension of anxiety is also
an important issue with the dying. Many worry about the effects of their
illnesses on family members and friends. For people whose social roles are
critical to the well-being of others anxiety over others may be as
pronounced as self-concern. For instance, a single mother with two young
children is quite likely to experience great fear for the future and
safety of her children. Another aspect of social anxiety in the dying
-involves the fear of loss and disruption of relationships. As suggested
above social anxieties may be due to anticipated rejection because of
physical revulsion, or to other factors, e.g., the fear of not being
needed or wanted by others.
* The spiritual and existential aspects of
death anxiety are also part of the psychology of dying. Questions about
the meaning of one's life and the possibilities of life after death are
common concerns of the dying person. It is not unusual for people to show
sudden increases in religious feelings when facing the prospect of
personal annihilation. In dealing effectively with these concerns
psychotherapists do well to cooperate with the clergy and pastoral
counselors, who are proficient in helping people through religious crises.
In Kubler-Ross' model anger is an essential stage of dying.
The disorganization of and threat to life felt by the dying person
generates frustration, resentment, and hostility. These emotions can
easily be turned against others or turned in on the self. Family members,
friends, hospital staff, and therapists are likely to bear the brunt of
this anger. The reactions of the recipients of anger may include
withdrawal, anxiety, defensiveness, and anger in return. This will only
complicate an already tension-filled situation. When the patient's anger
is internalized, it leads to self-recrimination, self-blame, guilt, and
lower self-esteem. As many psychologists have pointed out, anger turned on
the self often fuels depression. The anger of the dying person is not
always focused on others or the self, but is for many a diffuse,
untargeted feeling. The pain, injustice and absurdity of dying cannot
always be blamed on anyone or anything but the human condition, and that
cannot be changed.
A case reported by Kubler-Ross (2)
illustrates some of the common features of a patient's anger.
Bob, a 21 year old cancer victim, was
troublesome with the staff and other patients. His intense hostility
prompted Kubler-Ross' consultation with him. On seeing his collection of
"Get Well" cards she asked him, "Bob, doesn't that make you mad? You lie
on your back in this room for six weeks staring at this wall with these
pink, green, and blue get well cards?"
"He turned around abruptly, pouring out
his rage, anger, envy, directly at all the people who could be outside
enjoying the sunshine, going shopping, picking a fancy get-well-soon card.
And then he continued to talk about his mother who 'spends the night here
on the couch.
Big deal! Big sacrifice! Every morning
when she leaves, she makes the same statements - "I better get home now, I
have to take a shower!" ‘And he went on, looking at me, most full of hate,
saying, 'And you too, Dr. Ross, you are no good! You, too, are going to
walk out of here again.'
What counsel and advice can be offered to
the dying person who experiences these intense emotions, and the many
associated problems accompanying them? Often, the answer depends on the
theoretical orientation of the therapist. As discussed earlier, different
theories recommend different strategies for treating emotional distress.
Behavioral therapies can assist the patient to take some control over
these feelings through techniques like desensitization, stress management,
and relaxation training. Even a small measure of control can improve the
condition of the patient. Humanistic therapists seek to help the patient
confront death in as active and positive a way as possible, relying on an
exploration of the individual's values, goals and self-understanding.
Dynamic therapy attends to the defensive reactions of the patient, and
attempts to overcome self-defeating defenses in order to help the patient
through the dying process.
Despite considerable diversity in theory,
the practical demands on counselors of the dying have led to some common
concerns. As a rule therapists working with dying people take an
"eclectic" approach - they choose from various theories those ideas which
are most applicable to the individual needs of their patients.
If there is one fundamental principle of
therapy with the dying person, it is to facilitate communication about the
person's needs. A primary task of therapists is to assist patients in
meeting their individual needs in their remaining time. Of course, each
one has different needs, depending on life history, personality, and many
other factors, but there are some common needs shared by most dying
people. These needs include, but are not necessarily limited to, security,
affection, support, dignity, and self-expression.
Context of Dying
Dying, like other aspects of life, is
uniquely conditioned by numerous individual differences. In discussing
this uniqueness the term "life context" may be used to capture the complex
aspects of the patient's life which influence the process of dying (16).
Two psychosocial dimensions of the life context will be explored here -
the developmental and the treatment contexts.
Dying is often assumed to be a problem of
the elderly. Although this is generally an accurate assumption, much of
the attention of psychotherapists working with the dying has been directed
at groups other than the elderly. The age of the person is an important
therapeutic factor insofar as it determines the needs of the patient, the
reactions of the family, and attitudes of treatment staff. Specific
therapeutic issues will be considered for three age groups - the elderly,
adults, and children.
The elderly person, having reached what is usually
thought to be the "normal end" of life, is more likely to see death as a
timely, though not necessarily welcome, event. The perceived timeliness of
death is an important variable in the patient's and others' reactions to
the process of dying (5). Death is not typically desired by the elderly
person, but it is more likely to be accepted. The families and friends of
the elderly dying person tend to view death as less tragic and threatening
than in the case of a child or young adult. Unfortunately, in our society
the elderly are an undervalued group, and this is reflected in the
attitudes toward death in this part of the life span. The death of an old
person is usually less disruptive of normal family processes, because of
the marginal economic and social roles of the elderly.
In therapeutic work with this group several important age-specific
problems arise. The combined effects of old age and terminal illness can
produce extreme physical handicaps which are both painful and emotionally
distressing. The loss of physical control over one's body is a
frustrating, embarrassing, and depressing experience. Given a marginal
social role and terminal illness the elderly person can easily experience
a sense of uselessness and unimportance in the final months of life.
There are few events like the death of a child which provoke such intense
emotions and exert such powerful effects on family, friends, hospital
staff, and therapists. The therapy needs of dying children vary greatly
with age, illness, personality, and family factors. Toddlers and infants
respond to their dying mostly in terms of the reactions of family members.
The lack of understanding of death in the very young child limits the
range of emotional reactions to dying. The young child's conception of
death is quite vague and magical, and the feelings about dying are more
often fears of separation from parents. In addition the fear of physical
pain and suffering needs to be managed in therapy, as well as the behavior
of the dying child, e.g., compliance to hospital rules and medical advice.
With increased maturity
and self-awareness the school age child begins to perceive death as a more
permanent and concrete event. At this age the child may view dying as a
punishment for wrongdoing, and experience remorse, guilt, and shame.
Through middle childhood the concept of death becomes more defined as a
final and irreversible event. By age 10 children generally will conceive
of death as permanent, and with this awareness comes a more intense and
personal emotional response to dying.
Dr. Bluebond-Langner, an important researcher in this area, describes five
stages of understanding that children undergo in their awareness of the
meaning of death:
1. An understanding that the illness is serious.
2. An understanding of the drugs and their side-effects.
3. An understanding of the purpose of treatment procedures.
4. An awareness of phases of relapse and remission.
5. An awareness of their own eventual death. (28)
From late childhood through adolescence there is a greater concern of the
dying child with the physical aspects of the process. The fear of pain and
physical disability emerge as central concerns. A related problem that is
most apparent in teenaged patients involves the association between
body-image and identity, and the feelings of shame and disgrace over their
physical conditions. For the terminally ill adolescent there is an acute
sense of the injustice of death.
Dying teens rightly see themselves as
being cheated out of a future, and this hard to accept. Hostility and
aggressive behavior is not unusual for this group, and these feelings
certainly need to be addressed. (29, 30)
Therapy for the dying child must be
adjusted to the developmental level of each patient. In general therapists
seek to provide information, support, and solace for the dying child. The
child needs accurate facts about the illness and treatments, but obviously
communications of this sort must be appropriate to the child's capacity
for understanding. The discussion of death and dying with the young child
is best approached by letting the child lead with questions, and giving
direct answers to them without overloading the child with information too
advanced for comprehension. The role of parents in these discussions is
extremely important, especially for the very young child.
Emotional support is also a goal of therapy with dying
children. The emotions of the child may be overwhelming and confusing.
Children need to feel security and support in the therapy so that they may
openly express their concerns and fears. For younger children play therapy
is a good strategy to enable them to work on their emotions. Therapists
should provide the child with opportunities to experience positive
feelings of success and control to enhance the child's self-esteem and
Attempts to normalize the child's life may also help. For example, it is
beneficial where possible to maintain the family and educational
activities in which the child is involved. For older children and teens
help can be gained through the use of peer group meetings.
For dying children therapy needs to address
the concerns of the family. Family members are essential for effective
therapy with children. However, family members must be helped to deal with
their own problems regarding the child's dying. In a family therapy
approach both the dying child and others in the family learn to
communicate openly with one another. Parents often must be helped to
manage their feelings of anger, guilt, and helplessness, as they learn to
help their child. (31. 32, 33)
Everyday reality is obviously quite
different for the dying person, and a central fact in the difference is
that of "treatment". The primary social role of the dying person is
"patient", whose identity-and purpose are defined largely in terms of the medical treatments and other services being offered -
psychotherapy, social welfare, pastoral counseling. The features of the
treatment context vary from patient to patient depending on specific
medical, psychological, and social characteristics, but for the entire
treatment context will influence the needs and concerns of the dying
person. The treatment context often produces problems which have to be
addressed in therapy. Two aspects of this context which will be considered
are the death awareness and the specific illnesses of
Glaser and Straus analyzed several patterns
of communication between family, medical staff, and dying patients in
their important work, "Awareness of Dying" (34). These patterns define the
awareness context of the dying person. Each of these patterns is
distinguished by the type of communication about the person's condition
that takes place between the patient and significant others. Four patterns
can be identified - closed awareness, suspected awareness, mutual
pretense, and open awareness.
* In the closed awareness context others
know the patient is dying, but the patient does not.
For example, the parents of a terminally
ill child may pretend that the child will be getting out of the hospital
soon, even though they know it will never happen. Parents may play this
game to "protect" the child and to try to maintain their own denial.
* Suspected awareness exists when others
try to deceive the patient about the terminal condition, even when the
patient suspects the truth.
The dialogue below from an interview with
two nurses from Glaser and Strauss' book shows the working of suspected
awareness in a hospitalized patient.
First Nurse: A stern face, you don't have
to communicate very much verbally, you put things short and formal ...
Yes, very much the nurse.
Second Nurse: Be tender but
First Nurse: Sort of distant,
sort of sweet.
Second Nurse: Talk about everything but the
condition of the patient.
First Nurse: And if you do communicate with
them, when you are not too much the nurse, you could talk about all kinds
of other things, you know, carefully circling the question of death.
* The pattern of mutual pretense is one in
which the patient and others have struck a "silent bargain" to pretend
that the patient is not dying, even though everyone knows the truth. The
dialogue below, also from Glaser and Strauss, illustrates such a context
between a nurse and patient.
Interviewer (I): Did he
talk about his cancer or his dying?
Nurse (N): Well, no, he
never talked about it. I never heard him use the word cancer.
I: Did he
indicate that he knew he was dying?
N: Well, I got
that impression, yes ... It wasn't really openly, but I think the day that
his roommate said he should get up and start walking, I felt that he was a
little bit antagonistic. He said what his condition was, that he felt
very, very ill that moment.
I: He never
talked about leaving the hospital?
I: Did he
talk about his future at all.
N: Not a
thing. I never heard a word.
I: You said yesterday
that he was more or less isolated, because the nurses felt that he was
hosted. But they have dealt with patients like this many times. You said
they stayed away from him.
N: Well, I think at the
very end. You see this is what
I meant by isolation-we don't communicate with them.
* The healthiest pattern is open awareness
in which both patient and others acknowledge and openly discuss the
facts of dying. From a therapeutic stance this is the ideal awareness
context and a goal of therapy. Open awareness is not necessarily easy to
attain, and attempts to establish this type of relationship may
prematurely overwhelm the defenses of the dying person and provoke
significant emotional distress. There are many advantages of this
open awareness for the patient and significant others in
the treatment context. Patients and their families can benefit by honest
sharing of their experiences regarding death and can prepare themselves
more fully for it. Also, the patient is able to make plans and
arrangements necessitated by death, e.g., funeral plans, writing a will.
In considering the treatment context of
the dying person one factor of fundamental importance is the specific
disease from which the patient suffers. Specific terminal illnesses create
unique medical, psychological, and social problems for patients. Though
there are obviously many diseases which kill people, only a few have
received special attention by those working with the dying. Three diseases
and their implications for psychotherapy will be discussed here: cancer,
Alzheimer's disease, and AIDS.
Therapists have attended to cancer victims more than any other terminally
ill group. Some of the features of terminal cancer which set it apart from
other illnesses are its prolonged course, periods of remission, and its
stigma (35, 36). Because cancer may be a progressively debilitating
disease, the cancer victim can anticipate a long and often painful
struggle, associated with aversive medical treatments. For many cancer
patients the disease involves a rollercoaster ride from remission to
relapse, which is enormously stressful.
Therapists working with cancer patients
will focus on the cycle of optimism and despair which accompanies changes
in the symptoms of the disease. In addition there are stress and pain
management techniques that are helpful in enabling patients to get through
the more noxious periods of medical treatment, e.g., chemotherapy.
Behavioral therapy techniques such as desensitization and relaxation
training have been useful to help cancer patients learn to control the
anticipatory stress and nausea related to chemotherapy. (37)
Alzheimer's Disease. This is a degenerative brain
disease which presents a major health problem for the elderly. The
combined physical and psychological effects of this disease are quite
devastating, and taken in conjunction with the normal problems of old age,
it creates a host of therapeutic needs for the victims and their families.
In the early stages patients and family members benefit by education in
the nature of the disease so they can anticipate and better cope with the
changes to come, in particular the emotional and cognitive impairments of
the patient. With its advance the patient experiences severe dementia, and
the focus of therapy shifts more to helping family members manage the
patient as effectively as possible, assuming they are in the role of
Even though there is at this time no cure
for Alzheimer's, it is possible to address in therapy the patient's
secondary symptoms and their consequences in order to assist the person in
adjusting to the disease. Three kinds of issues are of major concern in
treatment of the Alzheimer's patient:
* Painful Self-Awareness. The emotional
reactions of the patient to the physical and psychological debilitation
due to the disease may include anxiety, depression, and
* Self-Incapacitation. Numerous
self-harming consequences may result from the progressive
deterioration, such as careless behavior (e.g., falling down),
malnutrition, and self-neglect.
* Over stimulation. With reduced stress
tolerance capacities and coping ability the Alzheimer's victim may be more
easily overwhelmed by tensions and irritations of everyday life.
The past few years have seen an enormous amount of interest in AIDS
(acquired immune deficiency syndrome). Some predictions indicate that AIDS
will reach epidemic proportions in the next 20 years. For now though
mental health professionals have begun to examine the specific therapeutic
needs of AIDS victims. As great as the stigma of cancer may be, it
pales in comparison with the stigma of AIDS. Several reasons for
this stigmatization are apparent. It is primarily transmitted through
intimate sexual contact and sharing of needles by intravenous drug users.
The prevalence of AIDS in homosexuals, prostitutes, and drug abusers gives
it an association with "deviant" sexuality and antisocial behavior.
Aside from its association with
groups who are negatively perceived, the disease is typically fatal, thus
allowing little or no hope for recovery on the part of victims. For now at
least, a diagnosis of AIDS is equivalent to a death sentence, and the fear
generated by this disease among the public has often been turned against
its victims and those in high AIDS-risk groups.
Where most other terminally ill patients
are pitied, AIDS victims are often shunned, rejected, and met with
open hostility, even by those family members and friends who are most
needed by the patient.
Presently, the single largest risk group for AIDS is homosexual men, and consequently much of the
therapeutic work has focused on the needs of this group.
Guilt, shame and fear of recriminations from others are common
emotional reactions presented by the gay patient. These feelings
are sometimes justified in light of the responses of family and
hospital staff". Therapists can work to help AIDS victims openly express
their fears and to manage the emotional distress produced by
the disease. (40, 41, 42)
What Can Psychotherapy Offer the Dying
Basically psychotherapy offers the dying
person much the same that it offers anyone - a supportive relationship in
which the individual has opportunities to work on significant personal
concerns. The unique life situation of the dying person places limits on
the process of therapy and demands greater modesty on the part of
therapists regarding possible outcomes. Regardless of theoretical
orientations therapists working with dying patients rely first and
foremost on communication. Therapy is best used as a forum for exchanging
information, educating, expressing fears, and discussing needs.
What are the Goals of Therapy with Dying
The major goals of therapy with the dying
patient can be summarized in a few simple statements.
1. To allow open communication with
patients regarding their conditions, and to provide honest, factual
information about those conditions.
2. To facilitate the expression of
important emotions and to help patients learn to manage these emotions as
well possible under the circumstances.
3. To provide a relationship in which
patients can experience support in the confrontation with death.
4. To intervene between patients and other
significant people such as family, friends, and medical staff.
The fundamental purpose of psychotherapy
for the dying person is best described by Avery Weisman, who proposes that
therapy should help patients to participate in "an appropriate death",
rather than having an "appropriated death" thrust at them.
"An appropriate death is one that
would be acceptable to the patient; a death that might be chosen had there
been a choice." (5)
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