What Pediatricians Say to Mothers of Sick Newborns: An Indirect Evaluation of the Counseling Process

(1)

What

Pediatricians

Say to Mothers

of Sick Newborns:

An Indirect

Evaluation

of the Counseling

Process

Ronald I. Clyman, M.D., Susan H. Sniderman, M.D., Roberta A. Ballard, M.D., and

Robert S. Roth, M.D.

From tile Departments of Pediatrics California, San Francisco

of .%fount Zion Medical Center, San Francisco, and University of

ABSTRACT. We examined what physicians tell mothers

about their premature infants’ chances of survival in the first

hours after birth and how mothers interpret the physicians’ remarks. Thirty-seven physicians (8 neonatologists, 29

pedi-atric house officers) and 21 mothers completed forms about hypothetical situations; from these forms, quantitative infor-mation was obtained about what each physician thought the chances of survival for a hypothetical infant were, what each

physician would tell a parent about the child’s chances of

survival, and how a mother would interpret the physician’s

statement about her child. Mothers heard poorer prognoses

for their infants than current nursery survival rates would predict; in addition, mothers heard poorer prognoses when

counseled by house officers than by neonatologists. The physicians’ lack of appreciation of their own nursery’s

survival rates was the major factor that accounted for the

mothers’ poorer estimation of the prognoses. House officers,

inexperienced in newborn care, had a significantly worse estimation of an infant’s actual prognosis than did neonato-logists; this difference in knowledge of actual survival rates accounted for the worse prognosis that mothers heard when counseled by a house officer versus a neonatologist. Training

programs in neonatology need to ensure that their physicians

are aware of the changing experiences that are occurring in

the field so that they have the information to counsel parents

appropriately. Pediatrics 63:719-723, 1979, communication

skills, perinatal, nursery, prenmature, counseling.

The

complexity

and

acute

nature

of caring

for

infants

in

an

intensive

care

nursery

make

it

difficult to evaluate the psychological needs of parents. Perhaps no issue in patient care arouses as much controversy and difference of opinion as

does

the

question

of how

and

what

to tell

parents

about

the

nature

and

prognosis

of

their

child’s

potentially fatal illness. ‘

Wiener3

has

pointed

out that many physicians, particularly “those

with

less

seasoning,”

are

likely

to avoid

a

discus-sion of prognosis with parents, even after the

parents

ask.

The

following

study

is an attempt

to

examine

what

physicians

at

various

levels

of

training

tell

mothers

about

their

infants’

prog-noses

in

the

first

hours

after

birth,

and

how

mothers

interpret

the

physicians’

remarks.

METHODS AND SAMPLE POPULATION

Physicians

Thirty-seven

physicians

from

Mount

Zion

Hospital

and

University

of California,

San

Fran-cisco,

were

asked

to participate

in this

study.

The

rates

of survival

(from

1973

to 1977)

were

virtual-ly the same for the two nurseries. Eight full-time

neonatologists

who

had

been

attending

at either

of the

medical

centers

for

more

than

three

years,

and

29 pediatric

house

officers

(interns,

residents,

and

fellows

in

neonatology)

participated

in

the

study. The eight neonatologists will be referred to as the “experienced MDs” and the 29 house

officers

will

be

referred

to as the

“inexperienced

MDs”

in

neonatal

problems.

In

a

preliminary

study, 20 physicians were given a list of

state-ments

that

they

might

use

to

tell

mothers

about

their

infants’

medical

condition.

From

this

list,

seven

statements

were

chosen

that

85%

of

the

physicians

rated

as satisfactory

representations

of

what

they

might

say

to

mothers.

The

37

physi-cians in the study were then given the list of seven

statements

(Table

I) and

asked

to indicate,

to

each

statement,

the

percentage

of survival

they

would

mean

if they

were

to

use

that

statement

to

tell

mothers

about

their

infants’

condition

(form

A).

Five

to ten

days

later,

each

physician

was

given

another

form

(form

B)

with

four

hypothetical

Received July 26; revision accepted for publication Septem-ber 19, 1978.

(2)

TABLE I

Flow 21 MOTHERS INTERPRET STATEMENTS THAT PHYSICIANS MAKE ABOUT THEIR CHILDREN

Statements Gicen to .fotller by Physician

I. I feel confident in telling you now, that on the basis of our past experience, the baby’s chances of surviving are excellent.

2. Although infants with this problem often have a stormy and corn-plicated hospitalization, on the basis of our past experience, I would say that most babies with this problem have an excellent chance of surviving.

3. Although infants with this problem often have a stormy and com-plicated hospitalization, on the basis of our past experience, I would say that the chances of the baby’s surviving are good.

4. Although infants with this problem often have a stormy and com-plicated hospitalization, on the basis of our past experience, I would say that there is a fair chance that the baby will survive. 5. Infants with this condition often have complicated

hospitaliza-tions. Some turn out very well, but some don’t survive or survive with some residual problems. Although I’d like to tell you now how things will go, I can’t give you any definite predictions. We can only wait and see how the baby progresses.

6. Infants with this problem often have a complicated hospitaliza-tion and, although some survive and develop as normal infants, on the basis of our past experience, the chances of the baby’s not surviving are fairly high.

7. Infants with this problem often have a complicated hospitaliza-tion; on the basis of our past experience, I would say that the baby’s chances of surviving or surviving as a normal infant are poor.

%fean Survical

Mother Hears (%)

92 ± 2

82 ± 3

69 ± 3

49 ± 5

37 ± 5

22 ± 4

15 ± 3

cases of newborn infants who might be under

their

care.

The

physicians

were

instructed

to

“assume that you are going to talk to the mother

about

her

child

for

the

first time.

She

asks

you

what

the

baby’s

chances

of surviving

are.

After

explaining

the

infant’s

problems

you

summarize

by

saying

one

of

the

statements

following

the

case.”

After

each

case

was

a list

of

the

seven

statements

that

the

physicians

had

previously

rated

on

form

A. Immediately

after

completing

form

B,

the

physicians

were

given

form

C,

on

which

the

four

hypothetical

cases

were

listed.

They were then asked to indicate what they

thought

the

actual

percentage

of survival

was

for

each of these cases.

Mothers

Twenty-one

middle-class

mothers

(22

to

38

years

old,

who

were

not

involved

in health

care

delivery) who had normal healthy infants were

asked

to

participate

in

the

study.

All

were

acquaintances

of one

of the

authors

(R.I.C.)

and

were

eager

to

participate.

They

were

given

a

form (form D) with the seven statements from

Table

I and

the

following

instructions:

Suppose that instead of having a nice healthy baby, your baby was sick at birth and had to be taken to the intensive

care nursery. After an hour or more, one of the doctors comes to tell you about your baby’s condition. You are worried and ask if the baby will live. What would you think your baby’s percent chances of living (0 to 100%) were if the doctor said one of the statements below?

The

mean

percentage

of survival

assigned

to each

statement

by

the

group

of 21

mothers

is given

in

Table

I along

with

the

seven

statements.

From

the

four

forms,

we

obtained

quantitative

information

about:

(1)

what

each

physician

projects

the

chances

of survival

to be

in the

four

hypothetical

cases

(form

C);

(2) what

each

physi-cian

would

tell

mothers

about

the

child’s

chances

of

survival

(by

using

the

percentage

that

the

physician

assigned

to

statements

on

form

A

to

quantitate

the

physician’s

responses

on

form

B);

and

(3)

how

mothers

interpret

the

physician’s

statements

(by

using

the

“mean

survival

a mother

hears”

from

Table

I to quantitate

the

physician’s

statement

on

form

B).

RESULTS

The

four

hypothetical

cases

that

physicians

(3)

TABLE III

the

actual

percentage

of survival

for

the

two

nur-series over

the

years

1973

through

1977,

based

on

birth

weight,

gestational

age,

and

presence

or

ab-sence of hyaline membrane disease (HMD), was:

case

1, 100%;

case

2, 97%;

case

3, 94%;

and

case

4,

55% for 21, 39, 30, and 20 infants, respectively.

\Ve

compared

the

actual

survival

statistics

in

the two nurseries

with

the

chances

of survival

that

the mothers hear (Table

III).

In

every

instance,

the mother’s expectations for the infant’s survival was less than the actual expectations. This

dis-crepancy was greater

when

mothers

were

told

by

“

inexperienced’

‘ rather than “experienced”

phy-sicians (Table III).

Almost all the physicians significantly underes-timated the infants’ actual chances of survival. As can be seen in Fig 1, although there was a wide range of opinions about actual nursery statistics, practically all physicians surveyed believed that these infants have a poorer prognosis than their own hospital’s nursery statistics would predict.

When we look at the statements the physicians

chose to tell the parents, it is apparent that there are some physicians who indicate better chances

of

survival

than

what

they

actually

believe

to

exist; however, there is an even larger group who indicate poorer chances of survival. As a group, the physicians appeared to give a slightly poorer prognosis than they believe the infant has (Fig 1).

Some mothers hear more positive and some more negative prognoses than the physician wished to communicate; but, as a group, mothers tend to hear a slightly poorer prognosis than the physician wished to communicate (Fig 1).

Fig

2 shows

the

mean

differences

in

informa-tion transmitted by the eight “experienced” and 29 “inexperienced” physicians. There appears to

be

no

significant

difference

between

“experi-enced” physicians’ and “inexperienced” physi-cians’ ability, as a group, to “tell a mother” what

TABLE II

HYPOTHETICAL CASES

Case 1-35 Weeks A#{176}wit/lout HMD:f A 1,600-gm, SGA (less than tenth percentile) infant born to a woman with severe preeclampsia at 35 weeks’ gestation. The

in-fant is not receiving oxygen but had a central venous hematocrit value of 65% at 2 hours of age. The infant has an initial episode of asymptomatic hypoglycemia (less than 20 mg/dl) picked up on a routine dextrostick examination (at 2 hours of age) that responds rapidly to intravenously administered glucose therapy.

Case 2-35 weeks AGA, with H.ID: A 35-weeks AGA

in-fant born by cesarean section to a mother who had pla-centa previa. The infant is pale and having grunting res-pirations. The infant is intubated and ventilated, and an umbilical catheter is placed. Initial pH is 7.09; Pco,, 35 torr; Po, 80 torr. The infant is hypotensive and is given blood. By 1 hour of age, the infant is placed on a venti-lator and has a chest roentgenogram consistent with

HMD.

Case 3-30 weeks AGA, with H.ID: A 1,300-gm AGA in-fant delivered at 30 weeks’ gestation after spontaneous rupture of the membranes and premature labor. Grunt-ing respirations develop, and the infant has a chest roentgenogram consistent with HMD 1w 1 hour of age. The infant’s respiratory status progressively deteriorates. By 6 hours of age, the infant is placed on a ventilator.

Case 4-26 weeks AGA, without HMD: An 800-gm AGA infant is born at 26 weeks’ gestation into a “pediatric set-up.” The infant is intubated within 30 seconds and

ventilated with 40% oxygen. Initial pH at 10 minutes of age is 7.18; PCO, 44 torr; and Po, 65 torr. The infant is stabilized over the first few hours and, by 4 hours of age, the infant is still on a ventilator in Fio, = 0.30 with

pressures of 10 cm HO/2 cm HO at a rate of 15 per minute. Chest roentgenogram does not show HMD.

#{176}SGA= small for gestational age; AGA appropriate for

gestational age.

tHMD = hyaline membrane disease.

::Fio = fraction of inspired oxygen concentration.

they want her to hear (P >

.5,

Mann-Whitney,

U-test)

or in their

opinions,

as a group,

to be more

or

less

optimistic

in

presenting

information

to

a

mother

about

her

infant

(P > .5, Mann-Whitney,

DIFFERENCE BETWEEN INFANT’S ACTUAL CHANCE OF SURVIVAL AND CHANCE OF SURVIVAL MOTHERS HEAR

Case % Nursery % Survival Mothe rs Hear When Told

Survival A

By Experienced MD By Inexperienced MD

(n8) (n29)

1-35 weeks SGA, without 100 88 82

HMD

2-35 weeks AGA, with HMD 97 83 67

3-30 weeks AGA, with HMD 94 72 59

4-26 weeks AGA, without 55 40 33

HMD

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(4)

MD expectation MD tells mothers

vs vs

nursery survil MD expectation

Mothers hear

vs

MD tells mothers

MD expectotton MD tells mothers

vs vs MD expectation

S

I Mothers hear vs MD tells mothers

a > > U) C a) C.) C a) a) 0 . (3 . a > > (I) C C., C a) a) 0 . Experienced MD

0

/n8xperiencedMD

Fic 2. How information about actual nursery statistics changes when told to mothers by house officers (inexperi-enced MD) versus neonatologists (experienced MD). Bars

represent mean

(

± SEM) of differences (experienced, n 8; inexperienced, n = 29) described in legend to Fig 1.

DISCUSSION

-40- #{149}

FIG 1. How information about actual nursery statistics changes when told to Inothers by a physician. Each dot (#{149}) represents for individual physician average of differences

(among

four cases) for (1) difference in the rate of survival according to nurserys statistics and rate according to what physician thought survival was; (2) difference in rate of survival according to what physician thought survival was and rate according to what physician would tell a mother; and (3) difference in rate of survival according to what physician would tell a mother and rate according to what “mean survival that mothers hear” for physician’s

state-nients. Stippled bar represents mean

(

± SEM) of 37

differ-ences ill each category.

U-test).

“Inexperienced”

physicians,

however,

have

a

significantly

poorer

estimation

of

an

infant’s

actual

prognosis

than

do

“experienced”

physicians

(P

< .01, Mann-Whitney, U-test); this

difference

in

awareness

of

actual

survival

rates

accounts

for

the

poorer

prognosis

that

a mother

hears

when

counseled

by

an

“inexperienced”

versus

an

“experienced”

physician.

The

transmission

of

information from the

actual

nursery

statistics

to

what

a mother

hears

can be divided into three steps: (1) knowledge: the physician’s knowledge of the actual statistics; (2)

optimism:

the

physician’s desire to be more or less

optimistic in presenting the information to a

mother;

and

(3)

interpretation:

the

mother’s

understanding

of

what

the

physician

wants

the

mother

to hear.

There

is

a

wide

range

of

opinions

held

by

physicians about whether to be optimistic or pessimistic in presenting information to parents. As a group, however, physicians tend to give

Many of the physicians we approached thought

that giving parents optimistic outlooks in the first hours after the birth of their premature infant was dishonest and misleading. They thought that if a

mother

is

prepared

for

a

death,

she

will

go

through the experience with less emotional

upheaval.

This

concern

has

been

expressed

by

I

We

have

found,

in

our

own

follow-up

study of parents who have lost a newborn, that

there was no evidence to suggest that parents

were

harmed

if an

earlier

favorable

prediction

proved

to be

incorrect.5

Although

physicians

who

use this

approach

are

attempting

to

be

helpful,

others have suggested that the anticipatory grief,

instead

of being

adaptive

to parents,

may

actually

be

disruptive

to

the

child-parent

relationship.’7

At

present,

most

premature

infants

do

survive.

Pessimistic remarks in the first hours after birth cause a premature infant’s mother to start the process of anticipatory grief. Kennell and Klaus7

have

observed

that

if

the

infant

lives

and

the

physician has been pessimistic, “it is sometimes difficult for parents to become closely attached

after

they

have

figuratively

dug

a few

shovelfuls

of earth.”

(5)

recent

years.59

The

mothers

used

in this

study

did

not actually have sick newborns. We did not think that it was proper to involve mothers at the time of transport or mothers who currently had infants being cared for in our intensive care nurseries.

How

mothers

actually

perceive

statements

made

by the physician at the time of transport must remain speculative.

Although the aforementioned two areas of controversy may play significant roles in the type of information a physician transmits to a mother,

we

found

that

the

major

factor

accounting

for

the

mothers’ poorer estimation of their infants’ prog-noses was the lack of knowledge by physicians (as a group) of their particular nursery’s survival

rates. House officers who are “inexperienced” in

newborn

care

think

that

the

prognosis

for

survival

for

a sick

newborn

is significantly

poorer

than

do

those who are “experienced” in newborn care. This difference in knowledge of actual survival rates accounts for the poorer prognosis that a mother hears when counseled by an “inexperi-enced” versus an “experienced” physician.

The

recent

improvement

in

survival

rates

observed in our medical centers is similar to that reported in other series.” When talking with physicians after the questionnaires were com-pleted, we observed that they tended to

remem-ber

the

sickest

infants

who

had

the

most

compli-cations and tended to forget the infants who had minimal problems.

When counseling a parent, it is important for the physician first to determine what the chances

for

an infant

will

be and

then,

on

the

basis

of

cur-rent

expectations,

to adjust

what

he or she

says

ac-cordingly. A physician’s style and ability to corn-municate information is an essential part of

effec-tive

counseling;

in addition,

training

programs

in

neonatology need to ensure that their physicians

are

aware

of

the

changing

experiences

that

are

occurring

in

the

field

so

that

they

have

the

information

to counsel

parents

appropriately.

REFERENCES

1. Rothenberg MB: Reactions of those who treat children with cancer. Pediatrics 40:507, 1967.

2. Schowalter JE: Death and the pediatric house officer. I Pediatr 76:706, 1970.

3. Wiener JM: Attitudes of pediatricians toward the care of fatally ill children. I Pcdiatr 76:700, 1970. 4. Harper R. Concepcion S, Sokol 5: Is parental contact

with infants in the neonatal intensive care unit

really a good idea? Pediatr Res 9:259, 1975. 5. Rowe J, Clyman R, Green C, et al: Follow-up of families

who experience a perinatal death. Pediatrics 62:166,

1978.

6. Friedman SB: Psychological aspects of sudded unex-pected death in infants and children. Pcdiatr Clin

Nortlz Am 21:103, 1974.

7. Kennel JH, Klaus MH: Caring for parents of an infant

who dies, in Klaus MH, Kennell JH (eds): Maternal

infant Bonding. St Louis, C V Mosby Co, 1976, p

209.

8. Korsch BM, Negrete VF: Doctor-patient comlnunica-tion. Sci Am 227:66, 1972.

9. Korsch BM: The Armstrong Lecture, physicians, patients and decisions. Am I Dis C/hId 127:328, 1974.

10. Kopelman AE: The smallest preterm infants. Am I Di.s

Child 132:461, 1978.

ACKNOWLEDGMENTS

Dr. Clyman is the recipient of a Young Investigator’s Award from the National Heart, Lung, and Blood Institute HL-21409-01.

We would like to thank Dr. Joseph Kitterman for his helpful discussions, Ms. Mureen Schlueter for her help in compiling survival rates for the nursery at the University of California, San Francisco, and Ms. Susan Axelrod for her help in the preparation of the manuscript.

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(6)

1979;63;719

Pediatrics

Ronald I. Clyman, Susan H. Sniderman, Roberta A. Ballard and Robert S. Roth

Counseling Process