Obstacles B

in the

PERITZ

LE

l\SO\,

Treatment

of Dying

Patients

\1.l).

Theory andpractice in the management ofthe dying patient have movedforward in the past two decades. However, the author believes the benefits ofthis progress have not reached a large segment ofthe population of dying patients-those individuals who have a higher level ofpsychopathologv or arefrom a lower socioeconomic group. Obstacles in the treatment ofsuch patients are described and illustrated by case histories; the author makes specific recommendations related to the care of these more difficult cases.

TREATMENT of the dying patient has gained systematic attention only during the past two decades. Despite the brevity of this period, there have already been three distinct historic phases. During the first phase, well-integrated patients who generally qualified for psychoanalysis were studied. During the second phase, treatment of the dying patient was extended to a larger but still selective group of middle-class individuals. The current or third phase of modern thanatology is facing the challenge of bringing the treatment of the dying patient to all mdividuals regardless of psychopathology, socioeconomic status, race, or religion. In order to accomplish this, obstacles in the treatment of these dying patients must be carefully delineated and confronted. In this paper, I will describe these obstacles, provide illustrative clinical cases, and make recommendations for dealing with them. THE

REVIEW

OF

THE

The First Two

LITERATURE

Phases

The first phase in the recent history of treating dying patients coincided with the appearance of The PsychiaInst and the Dying Patient by Kurt Eissler in 1955 (1). Eissler’s book was associated with a decided quickening of interest in thanatology. The treatment of dying patients recorded in this volume was careful, thorough, and well documented. A number ofdetailed clinical studies in this style followed (2-5), and landmarks were chanted in the feelings of the dying patient, his methods of coping with death, and the relationship to his doctors.

Dr. Levinson is Associate cine of the City University New York, N.Y. 10029.

in Psychiatry, of New

The author wishes to thank ments during the preparation

Lawrence of this

28

A m J Psychiatry

/32:1,

Mount Sinai School York, Fifth Ave. and Roose, paper.

January

M.D.,

/975

of Medi100th St.,

for his helpful

com-

These studies dealt with only a small minority ofthe population of terminally ill individuals. These individuals were, for the most part, young, intelligent, cultured, matune, reality-based, and responsive, with high levels of frustration tolerance and good capacities for object relations. They did not display the characteristics of isolation, dependency, immaturity, distrust, superstition, and lack of education that frequently appear in the general population. The second phase was exemplified in the work of Elizabeth Kubler-Ross, whose book On Death and Dying (6) appeared in 1969. This study, which took place at Billings Hospital in Chicago, sampled a highly religious middleclass group of individuals who were invariably mature, hard-working, self-sacrificing, verbal, responsible, family-oniented people with roots in the community. Like the cases in Eissler’s book ( I ), these cases are not suitable as models for the treatment of the dying patient in the general population because they do not reflect the significant limitations in relatedness, emotional stability, intelligence, and accomplishment that are found in the general population. The Third Phase.’ The Problem

Today

There have been several other books about the dying patient in recent years. These have either been general reviews with little or no clinical material (7-13) or have included “normal” economically favored subjects (14, 15). A large group of individuals, characterized by higher psychopathology and lower socioeconomic status, have not yet benefited from our increased interest and proficiency in the management of the dying patient, as Sudnow ( I 6) has illustrated. He described the care of the tenminally ill in a 440-bed county general hospital that treated mainly indigent patients, many of whom were black. The nature of the organization did not require assumption of any extended responsibility to particular patients and their families, as would normally be found in a private hospital. alcoholic patients [patientsj from lower-class settings, prostitutes, suicidal cases, vagrants, narcotic addicts, and the like, when encountered in grave borderline illnesses, were normally accorded a more rapidly fatal fate. These patients were [viewed as] less interesting [and] less deserving” (16, p. 206). In an earlier work, Shands (17) described a similar trend in the tumor clinic of the Massachusetts General Hospital, Boston, Mass. He found that many cancer patients dropped out because the traditional shifting of clinic staff led to frequent disappointment in their efforts to form a needed dependent relationship. Other reports “.

.

.

.

.

.

PERITZ

have shown that the adequacy of case management decreases with sociocultunal distance between the clinician and his patient (18).

LEVINSON

relational world. A hypochondriacal patient may be preoccupied with symptoms rather than relationships and may even feel relief and a sense ofvindication because his illness is a real” disease. The patient with paranoid character traits is likely to react to his progressive organic disease with heightened distrust and suspicion that is fed by growing anger, despain, frustration, and helplessness. The individual with a schizoid tendency reacts with increased withdrawal, seclusiveness, and fantasy preoccupation. These reactions present formidable obstacles to the physician who attempts to care for a dying patient during his terminal illness. Patients who present a narcissistic personality structune often have functioned very well prior to their disease, despite an inordinate need to be admired, a shallow emotional life, and a tendency to exploit their objects. Under the stress of terminal illness, they feel extreme envy and despair, and their enhanced distrust and depreciation of others leaves them completely unable to depend on anyone. The ravages of disease often increase their underlying rage and lead to the appearance of paranoid traits that further impede the staff’s efforts to help them. Other borderline-type traits include the impulse neurosis-a form of character pathology that finds expression in alcoholism and drug addiction among the general population. Such patients’ pursuit ofdrugs for terminal pain is particularly difficult to manage. This group of patients merges with the “acting-out” personality disorders, which present a particular proclivity for suicide. Finally, there is the passive-dependent personality, who is often lonely and pessimistic and manifests a deep sense of futility and hopelessness. The following sections will describe patients I studied who presented obstacles related to the factors I have enumerated. “

FACTORS DYING

LEAI)ING

TO

OBSTACLES

IN

TREATING

PATIENTS

A number of factors can lead to obstacles in the treatment of the dying patient by causing abnormal mood states, excessive regression, negativism, acting out, abuse of medication, and countentransfenence reactions on the part of the stafl. I have found the following factors most likely to lead to complications in the treatment of the dying patient: I ) severe ego deficiencies in the areas of frustration tolerance, contact with reality, and cognitive function: 2) pathological coping mechanisms that lead to withdrawal, isolation, suspicion, and conflict with doctors, clergy, family, and hospital staff; 3) the nature and severity of the physical disease; 4) religious, socioeconomic, cultural, and racial barriers; 5) lack of cooperation by the family; 6) iatrogenic factors stemming from the physician’s unresolved feelings about death and his frustrated omnipotence; and 7) shortcomings in the patterning of medical care. Chronic schizophrenia and mental subnormality, which were included under factor I, accounted for 3 cases in my sample of 14 patients. Factor 2 was a steady feature in the borderline psychopathology that characterized most of the remaining subjects in the cases I observed. A discussion of borderline traits that present obstacles to treatment precedes case histories illustrating these factors. Borderline

Traits

as Obstacles

While the number of psychotic patients in the general population is not large, the incidence of borderline mdividuals is considerable. In the population of dying patients there are also stable character disorders that have decompensated under the stress of mortal disease. The borderline patient who is terminally ill often shows an excessive use of denial, coupled with marked deficiencies in such ego functions as self-observation, reality assessment, perception, integration, and communication. There is a lack of tolerance for anxiety and other affects, making it impossible to go through a process of protest and mourning ( 19). These patients find it difficult to feel concern for their objects and to feel guilt. Their reactions take primitive forms of rage and impotence rather than mourning and regret over aggression. They tend to withdraw from too close an emotional involvement, which lends a shallowness to their lives. Other characteristics associated with the borderline level of psychopathology are obsessive and compulsive mechanisms, hypochondniasis, paranoid trends, and schizoid traits. These elements often present overwhelming barriers to the establishment of the working relationship that is necessary to effectively help the dying patient. An obsessive borderline patient tends to intellectualize the experience of dying, to employ isolation to excess, and to regress into an ideational rather than a

PATIENTS

STUDIED

While engaged in psychiatric consultation in a large general hospital, I focused on referrals that presented obstacles in the management of the dying patient. These more difficult” cases were selected from cancer patients referred from two services-ear, nose, and throat (ENT) and hematology. During a two-year period, I studied a total of 14 individuals-8 surgical and 6 medical cases. They represented only those consultees who had not accepted recommended psychotherapy but who could be partially followed anyway, or those who initially ac cepted contact but then broke it off on one or more occasions. In each case, the cancer was at least moderately advanced and the prognosis was poor. Eleven patients died within two to six months after referral. There were 9 men and 5 women, with an average age of46. Every subject I studied was seen for at least six sessions and most patients had many more sessions. In addition, there were consultations with medical staff, social service, family, and clergy. The ENT subjects were generally referred by the nuns“

Am

J Psychiatry

132:!, January

1975

29

TREATMENT

OF DYING

PATIENTS

ing staff because they were not experiencing the level of feeling associated with fatal disease. They usually manifested stoicism or excessive depression. The hematologic referrals were usually made by the attending physician and were often associated with untoward emotional reactions to chemotherapy with such drugs as cortisone, cyclophosphamide (Cytoxan), and vincnistine sulfate. The undue stress precipitated or underscored existing psychopathology. There are significant difTerences that cannot be overlooked between the patients with progressive tumors (many of them treated surgically) of the ENT service and those with the intermittent, invisible cancers of the blood system (20). However, patients with these diseases share a common ground when it comes to coping with death, Case Reports

In certain cases, religious, cultural, social, and racial factors can pose a formidable barrier in the treatment of the dying patient. Religion provides a harmonious means of coping with death for some people. Usually, religion emphasizes the importance of an afterlife, and it thus detracts from the finality of death and eases mourning and the need to withdraw the libidinal cathexes from love objects. Devoutly religious people often charge the image of God with libido that is freed in anticipation of entering a new world, and these individuals are often best served by the clergy. However, the dying patient who finds himself in the borderline area between religion and rationalism can provide formidable obstacles to therapy. Such patients

can

become

Obstacles

In the first case I will describe, excessive use of denial and paranoid mechanisms formed a serious obstacle to treatment. The second case deals with a borderline patient with severe acting-out tendencies. 1. A 61-year-old truck carcinoma in the neck region. surgery, the patient employed

driver

Case

disease,

and

he displaced

shoulder ailment and helplessness were

Another with this

of

attitudes,

weakness

he was

physicians,

which

illness and

suspicious

ofconcern

onto

he

viewed

as

a

cause

for

educated

and

fears

to

his

about

sadistic,

to

social

grandiose

stability,

He

as a sign

In

monologue

his

physician. recipient

2. A 29-year-old

narcissistic

and

process

that

decline,

he

phys-

feats.

masochistic

divorced

housewife had leukemia for two years before she died. The disease, combined with her psychological immaturity, led to a senies of emotional crises for which the internist insisted on psychiatnic

treatment.

contact

after

consistently

However,

a few sessions. shallow

and

on each

occasion

Her object

conflictual,

and

she

rejected

relationships she

had

the

had been always

main-

tamed an infantile attitude toward her mother. These infantile needs were greatly intensified by her fatal disease and led to a period of promiscuity. Intense envy of others’ health as well as rage at her mother, who had failed to protect her from the disease, led to much guilt and to an all-consuming sado-masochistic relationship with a lover. The therapist was an instant recipient of primitive transference wishes and of sadistic projections that made it difficult to alter the acting-out behavior. The patient’s children suffered abuse and neglect as a result of her acting-out

30

behavior.

Am

J Psychiatry

January

/975

doctrine

but

at

from

racial

as treatment

differences

ofa

black

In this situation, the of a hostile transference

can

patient

physician based

on

occur

in

by a white becomes the the patient’s

often real experiences of rejection and exploitation. The third case illustrates a barrier to the treatment the dying patient that resulted from cultural factors. deficiency in the tional obstruction

patterning in this

of

medical

care

was

an

of A

addi-

case.

Case 3. A 20year-old woman who had dropped out of high school and become involved with the counterculture was dying of Hodgkins’ disease. She rejected psychiatric consultation in of

milieu.

a faith The

healer

who

patient

was

terminated

popular an

in

the

important

counterculture

of chemo-

course

therapy at the insistence ofthe faith healer. This proved to be an unfortunate choice, as the disease, which had carried a hopeful

prognosis if given intensive months and led to rapid decline

therapy

more

faith

healer

and

distrust,

stress

of which

impasse

was

sent to a cancer hospital a bed on an acute surgical surroundings

in regard her

obstacles

when

the

to the

depression

in her

patient

was

terminal phase in order to free She was deprived of her familmedical

care

patterning

on her

earlier

refusal

Lack of cooperation by family other important obstacle in the

members treatment

patient.

a result

and anger additional

four

weak-

intervention, made psycho-

increasing

compounded

for her ward.

after

patient’s

psychiatric faith healer

by

posed

The

based

and staff cooperate.

as

returned

and death.

to her. Guilt

further

both The

treatment,

subsequent with the

acceptable added

treatment.

countertransference

The

impasse

can

ofdefIcient

be formidable,

to

can pose anof the dying as the

patient

of-

ten finds himself very dependent on his family and depnived of his authority (if he has not already surrendered it). The final clinical example I will present illustrates the dramatic interplay of a combination of factors that can provide formidable obstacles to treatment. The two main elements in this case are the special nature of the organic process Case

ofthe /32:1,

religious

too

ian

Case

arising

situations

ened physical state limited although her disillusionment

denial of a inferiority

of former

and vocational

he

consultation, In addition,

of any

passivity.

class.

Therefore,

behavioral or physician. and

relationship and anti-

feelings

ostracism.

people

and

and

emotional

a

He employed total social, and economic

rejection

an ongoing

related

resistance social worker,

of all

of

in establishing his pseudomasculine

of

a chronic

His frustration, anger, progressive debilitation

whom

were

of intellectualism. sense of intellectual,

ical strength,

he had had extensive denial toward his fatal

or even talking

as

overwhelming from a nurse,

presented

of metastatic

such

favor

smacked marked of

dying

inadequate.

emotional

presented whether

feelings

important obstacle patient stemmed from

intellectual

viewed

onto

and

Although massive

caused by neuralgia. resulting from the

projected

negligent,

all

was

skeptical

the same time view the therapist as too rationalistic, challenging, and th reatening. Cult ure-bound patients often view the therapist as an outsider. Competition between agents of the different disciplines can develop.

itself

and

iat rogenic

4. An

attractive

maxillary

sinus

factors.

24-year-old

with extension

woman

died

of carcinoma

to the eye and skull

after

a

PERITZ

one-year

of the disease

course

in the

prognosis.

treatment lose her

The

patient

because of the face,” as noted

that

featured

had

been

tragedy by the

marked referred

oscillations for

psychiatric

of “a beautiful girl nurses, who identified

having to heavily

with the patient. Psychiatric

treatment

confirmed

the

began

diagnosis

after

and

the

the

first

poor

surgical

The

with

However,

her

disease

members

ofgnief, helplessness, on rounds and were cation

in

was

scheduled

patient

response

death, dune,

and,

and

patient

at a stage

staff

of acceptance.

revealed

deep

the

patient’s

although

denial,

appeals.

she

was

stopped

discontinued

the bedside prognosti-

A second

faced

coping

mutilation,

the

the

inevitability

of

The

operative

unable

to eat due to the loss ofthe

ished

and

frail,

bersome

and

oral

The

nature

tionships

of the

patient

she

lose

could

cancer

that

her

face

to resume

She became

get

accustomed

to the

caused

a young

-

woman

support,

represented

a

special

of her prognosis reappearance

the psychiatric

and

The

patient

frontation dissuaded

with from

geny which reinstated

dure,

began

they and

The

denial

rationalized.

and

Denial

the patient

to continue

with death. and distrust.

to

too the

but she felt to the lesion

bedand

resume

her

con-

She

was iatrogenically

recovered

her efforts

died

with

from

the proce-

to arrive

a feeling

at an ac-

of hopeless-

approach

dying

to the more difficult dying patient conI ) dealing with the patient himself, 2) consultation for the personnel who cane for the

individual,

policies Very of such traditional

pants:

and

3) influencing

official

regarding death and dying. limited goals must be accepted patients. A good therapeutic sense cannot be expected.

and staff approach

often meet to therapy

with that

distrust may

within

a brief

must for the

be supported borderline

maintained.

attitudes

and

in the treatment relationship in the Instead, the thena-

or apathy. encourage

The pasventilation

in better integrated patients is viewed by these individuals with suspicion and seen as disinterest, condescension, foreboding, on pity. There is no time with the more difficult dying patient to work through borderline traits in the usual way. The therapist should quickly sense the patient’s suspicions and insecurities and actively try to alleviate them. Preoccupation with physical symptoms is another limiting factor. Support, reassurance, and relief of the physi-

span

tive

rather

intent

may

appear

decrease

and

needed.

also

Inordinate

remust

time.

educa-

oven

death

of

warrant

the

therapist must be their side effects,

in the factor

and

schi-

amount

may

The agents,

of the disease and due to spontaneous

and

the

depression

medication. treatment

Concern

the progression toms diminish

dying

course of to con-

increases

quickly fades remission

with

as sympon active

intervention.

It is particularly with

patient

any

and

paranoid

reduce

their expected efficacy. Variability organic process is an important

treatment

at

directive,

and

be able to use psychoanalgesics with skill and imag-

can

symtomatology

sider(2l).

defenses

interpretive.

Phenothiazines

zoid

dependepression

than challenged, need for distance

be supportive,

The therapist should pharmacologic agents and ination.

excess

de-

attenuate

Pathological

rather patient’s

should than

time.

and

to

sanction

combat

of

Suicidal

treatment

rapport

RECOMMENDATIONS

of three

providing

pist sive

heavily by the time

TREATMENT

drop

-all

need

apathy,

and

in responding

affects,

may

and

protest,

and the

rela-

therapist

usually spect

The

be agile

impulses,

withdrawal

heav-

death. However, the medical staffcould not be once again offering hope in the form of cryosur-

she was too weak

commodation ness, futility,

to

The

use of antidepressant familiar with cancer

obstacle

treatment,

counter encourage

should

changing

another.

dency,

patients takes precedence over to death, separation, and loss. While confronting rigid defenses

therapist

and

cum-

became only of the tumor),

too ugly and ashamed. When I was finally admitted side, I immediately asked to see her unbandaged made sure not to flinch at the gruesome sight.

in

analgesic

malnour-

had recurred.

for admiration,

As the true nature her again (after the

wanted

palate.

the tumor

on her looks to

treatment. clear to

before

prosthesis,

dependent

sists

proce-

the

fluid

denial,

be

operation

with

with

psychotherapy.

feelings

which inflicted great suffering, involved the resection of segments of the palate, maxilla, and orbit, as well as reof the eye. The patient was left with great pain and was

large moval

ily

arrive

and guilt. They began to avoid not able to maintain an accurate to

revived

and

of the medical

patient,

more

fenses

had a strong inclination toward denial but nevertheless began to express feelings of protest, anger, and despair in a brave effort to cope

in one

to

procedure

prognosis.

cal symptoms for these communications related Flexibility is important.

LEVINSON

urgent

the

is a more

they

must

fatal

illness

the

psychiatrist

cane

physician

difficult

case.

This

coordinate and

that

primary what

the

be responsive

establish

when

the

is necessary

patient

is told

to each

other’s

dying

because about

his

suggestions

about analgesia, palliation, etc. The psychiatrist should serve an educative function for the primary physicians who themselves must care for most dying patients. It should be demonstrated that the emotional needs of the dying

can

time.

This

be

instruction

responded

daily

rounds

as well

grand rounds. discourage a with” a dying the medical death, as well

within

be

as through

reasonable

given

amounts

informally

case

of

during

presentations

during

Subtle departmental influences that quietly young house staff member from “sitting patient should be uncovered. Discussion by and nursing staffs of their feelings about as their attitudes toward “psychos” and so-

cioeconomically and valuable in modifying ofdying

to

can

patients

morally deprived iatrogenic factors

individuals, in the

can treatment

be

(22).

To influence official attitudes, efforts must be made to recognize the dying patient’s special needs. Public funding should be sought for research and the development of varied programs. Then, each case could be carefully screened and a decision made as to whether psychiatric treatment was needed and, if so, what type of therapy should be given. At the same time, another decision would be made as to whether the patient was suitable for treatment on a general wand, a cancer ward, a terminal care hospital, or at home. Public and private health insunance should compensate physicians for the additional time

the

required

family

by

should

Am

the

emotional

needs

be covered

for specific

J Psychiatry

132.1,

of

January

the

dying,

expenses

1975

and

from

31

TREATMENT

OF DYING

PATIENTS

caring for the patient at home during the terminal phase, Finally, it is important to equip the medical student with the ability to recognize and respond to the emotional needs of the many terminally ill patients he will encounten. Along the same lines, continuing education programs for practicing physicians should promote the theory and practice of thanatology. All of these efforts should receive confirmation by the appearance of appropriate questions on licensure examinations, specialty board cxaminations, and during periodic review.

9. 10. II I2. 13. 14.

15. 16.

REFERENCES 1. Eissler

K: The

ternational

Psychiatrist

Universities

and

Press,

the Dying Patient. New York, Inl955 to natural death. Psychoanal Q 28:

2. Saul L: Reactions of a man 383-386, 1959 3. Young WH: Death of a patient during psychotherapy. Psychiat 23:103-108, 1960 4. Norton J: Treatment of a dying patient. Psychoanal Stud Child l8:54I-560, 1963 5. Roose L: The dying patient. mt J Psychoanal 50:385 395, I969 6. Kubler-Ross E: On Death and Dying. New York, Macmillan Publishing Co, 1969 7. Feifel H: The Meaning of Death. New York, McGraw-Hill Book Co. 1959 8. Glaser BG, Strauss AL: Awareness of Dying. Chicago, Aldine Pub-

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/975

17. 18.

19. 20. 21.

22.

lishing Co. 1965 Hinton i: Dying. Baltimore. Penguin Books, 1967 Pearson L: Death and Dying. Cleveland. Case Western Reserve Press, 1969 Brim 0: The Dying Patient. New York, Russell Sage Foundation, I970 Schoenberg B: Psychosocial Aspects ofTerminal Care. New York, Columbia University Press, 1972 Kastenbaum R, Aisenberg R: The Psychology of Death. New York, Springer Publishing Co. 1972 Schoenberg B, Carr AC, Peretz D, et al: Loss and Grief: Psychological Management in Medical Practice. New York, Columbia Urnversity Press, 1970 Weisman AD: On Dying and Denying. New York, Behavioral Publications, 1972 Sudnow D: Dying in a public hospital, in The Dying Patient. Edited by Brim 0. New York, Russell Sage Foundation, 1970, pp 191-208 Shands HC, Finesinger JE, Cobb 5, et al: Psychological mechanisms in patients with cancer. Cancer 4: I I 59 1 I 70, I 951 Gross HS, Herbert M R, Knatterud GL, et al: The effect of race and sex on the variation of diagnosis and disposition in a psychiatric emergency room. i Nerv Ment Dis 148:638-642, l969 Kernberg 0: Borderline personality organization. i Am Psychoanal Assoc 15:641 -685, 1967 Hertzberg Li: Cancer and the dying patient. Am J Psychiatry 128:806-810, 1972 Davies RK, Quinlan DM, McKegney FP. et al: Organic factors and psychological adjustment in advanced cancer patients. Psychosom Med 35:464 471, 1973 Artiss KL, Levine AS: Doctor-patient relation in severe illness. N Engli Med 288:1210-1214, 1973