m

. .w .
3.3.“...0...‘
or—Mm aw...

£2 ‘.
. .

. .~\
.

a»

. .. r. 5%

 

n...» ‘
61...: :23 1
iii. 1

in?

has
.. 4 ;.
finnnum‘itf
:Rhaiarv‘. l¥¥.

5;

1.3%., , .
.3..an
2-:
an. . 4 n
rzfiunmwuryfi ("Warm
.. 2, .2...
.rsvunfihi.

.2. .3”: ‘
30.")an 3.91:...) («on

I .33.: .
P31. 3%.“ h

s
gmfifluu . ‘
Qifldavnw .?t . h.
L141 iwvuidzi. 5‘
ha. v.43.»

a.
::
hivumm

. .513“

 

 

.15. Ml:

788 Illllllllllllllllllllllllllllllllllllll:llllllllllllllllllllll

31293 01688 0480

This is to certify that the

thesis entitled

Open Relationships/Honest Answers: A Dying Child's
Understanding of Terminal Illness and the Value in
Making the Truth Available

presented by
Sara A. Raza

has been accepted towards fulfillment
of the requirements for

MA degree in IPHH

 

 

Sid/fl fi/Im/ZLL/

“/7 Major professor

5 11 98
Date I /

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

 

 

LIBRARY

Michigan State ~

Unlverslty

 

 

PLACE IN RETURN BOX
to remove this checkout from your record.
TO AVOID FINE return on or before date due.

 

MTE DUE

DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

use mm“

 

OPEN RELATIONSHIPS/ HONEST ANSWERS: A DYING CHILD'S UNDERSTANDING OF
TERMINAL ILLNESS AND THE VALUE IN MAKING THE TRUTH AVAILABLE

By
Sara A. Raza

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
MASTER OF ARTS
Interdisciplinary Program in Health and Humanities

1998

ABSTRACT
OPEN RELATIONSHIPS/HONEST ANSWERS: A DYING CHILD'S UNDERSTANDING OF
TERMINAL ILLNESS AND THE VALUE IN MAKING THE TRUTH AVAILABLE
By

Sara A. Raza

This thesis argues that dying children have a moral claim to an open
relationship with their practitioner. First, I explain that an open relationship allows
honest communication between the patient and the practitioner. Such a relationship
cannot exist without sharing, autonomy, benevolence, compassion, courage, prudence,
phronesis, and justice; Next, I argue that such a relationship is morally ideal; then, that
contemporary theories of cognitive development do not rule out the possibility that
children are capable of such a relationship; finally, that some children's literature may
be a beneficial tool for helping children communicate about and understand difficult

issues.

To all my friends and family who constantly remind me of the power of faith,
hope and love. To my two furry angels, who always know when I need them most. To
those who are forever gone from this earth, you are always with me and give me the
strength to get up when 1 fall. And, mostly to all the children who have touched my life

and help me open my eyes to the. miracles all around- .you are the true miracles.

iii

ACKNOWLEDGMENTS

This thesis would not be possible without the constant guidance and
encouragement I received from members of my thesis committee, Dr. Judith Andre, Dr.
Lillian Phenice, and Dr. Linda Spence. Thank you so much for you suggestions and
support. A special thanks to Dr. Judith Andre, my thesis advisor, who helped to
encourage me to continue working on this thesis with the simple words that the topic is
really important. Judy, I really couldn't have done this without your direction, guidance,
grammar help and most importantly your willingness to listen and care.

I owe many of my thoughts and my ability to think in an interdisciplinary way to
the lPl-iH department and all the professors that conduct their courses in a way that
opens the minds of students and helps us to draw parallels among ideas that at first
glance seem to have no connections. A special thanks to Dr. Tom Tomlinson for
expanding my mind and to all my colleagues that kept me thinking of good arguments to
all I believe.

Finally, I would like to thank my mom for reading more prospective and thesis
drafts than one person should have to. You always told me pursue those things that
caught my heart and made me happy. That has to be the best advice that a parent could
ever give. Hopefully one day I will be able to give to others as much as you have always

given to me.

iv

TABLE OF CONTENTS

INTRODUCTION

 

CHAPTER]

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

REVIEW OF SCHOLARLY LITERATURE 5
Research about Children' 5 Ability to Understand Death 5
Work on Honesty in Health care 9
Work on the Use of Literature in Communicating with Children .................. 12
CHAPTER 2
WHAT'S SO GREAT ABOUT THE TRUTH? 13
To Tell the Truth 13
On the Other Side 14
Another Important Question - 16
Do These Reasons Fit for Children? 17
CHAPTER 3
AN ATMOSPHERE OF OPENNFSS 21
Open Relationships 21
Establishment of the Relationship 22
Harm 25
Personal Interaction Z6
. Practitioner/ Child Patient Relationship 27
Potential Problems 29
CHAPTER 4
COGNITIVE DEVELOPMENT: HOW A CHILD DYING FROM A TERMINAL ILLNESS
UNDERSTANDS DEATH 31
What Is It? 31
Views that Cast Doubt on Piagetian Theory 34
Other Issues in Child Development 36
CHAPTER 5
CHILDREN'S LITERATURE: A TOOL FOR APPROPRIATE DISCLOSURE 39
Literature's Value 39
'What Makes a Book Good? 40
Growing Through the Use of Literature - 40
Trouble: Bad literature 41
The Tools 41
Examples of Good literature 42
CONCLUSION 46
BIBLIOGRAPHY 49

 

INTRODUCTION
No one knows with regard to death whether it is not
really the greatest blessing that can happen to a man:
but people dread it as though they were certain that it
is the greatest evil. This is ignorance, which thinks that
it knows what it does not, must surely be ignorance most
culpable.

~Plato, The Apology

Death is one of the most difficult subjects to talk about because it reminds
us that we have little control over the world; this is never clearer than when we look at
children and realize that they too, die. I began this thesis trying to understand what it
is like to be a child with a terminal illness, yet there was no real way for me to
understand that without projecting my own feelings on the children that I so
desperately wanted to help. I

I figured that children needed hope, but only hope that was valid and
true. I believed that children needed and wanted to know the truth in all its nuances.
Then, it struck me that l was no better than the people before me. And I had to rethink
my plan of attack. If I really wanted to help children and make dying an easier
process, then I had to look at what the dying child really wants to know. So, I have
changed my focus, knowing full well that children are capable of much more than we
adults sometimes suspect. I began to think not about what children should be told, but
rather what they want to know. I cannot say that l fully‘understand what is going on
in the dying child's mind, but my aim in this thesis is to explore how a dying child
might see death and the dying process, what type of relationship might make the dying
process easier and finally whether there are tools available to aid in the dying child's
understanding of death. I feel much passion about this subject. Much of me thinks that

it is unfair that a child has to die and most of me wishes that we never had to wade

2
through such painful subjects. And yet I feel fortunate that I can bring a new look to

this age old problem.

In this thesis I am looking at children living with terminal illness, age seven to
ten, who have reached the terminal phase of their illness. I have chosen this age
group because it comes between the times when a child still does not fully understand
the notion of personhood and when the child desperately wants to be an adult. I have
also chosen to look at children who are in settings where death is all around and
presumed to affect their minds, as well as their bodies. In addition, these children will
have been primarily raised in health care settings. Therefore, they have spent a
considerable amount of time in the hospital. 1 This may also mean that some of the
children were first diagnosed with chronic illnesses and have since become terminal.

I have learned, through conversation with Dr. Linda Spence,2 that children are
given different information about their diagnosis and prognosis in different care
settings. In today's health care system, children are usually cared for at the clinic or
the hospital, although sometimes children are cared for at home or in hospice type
settings. Because children may receive different information depending on the setting
in which they receive their care, it is important, throughout this thesis, to keep in
mind that the children I will be focusing on have been cared for in the hospital and
may not be able to benefit from insight that the caring team in the clinic may have.

Finally, my focus in this study will only be on the white, middle class culture

with which I am familiar. Given more time, this study would be complemented by a

 

1"Considerable," meaning that they have been hospitalized at least once a month
since diagnosis.

2 Dr. Linda Spence, RN teaches in the Nursing department at Michigan State
University and has done considerable clinic and hospital work with dying children
throughout her career.

3

look at other cultures and how they might view children and terminal illness
differently.

In this thesis, I will be exploring how children living with terminal illness
might come to understand and question death and dying. i will look at the value an
honest open relationship might have for children and at their ability to ask questions
about their health and receive honest answers. In addition, I will discuss studies
relevant to children's ability to understand death. Finally, I will review some of the
tools that might aid in the child's understanding of such an abstract concept. 3
Throughout this thesis, I will focus on what we need to do for dying children. I will pay
particular attention to the ways relationships between the caring team and the child
affect that child's understanding of death and dying and their ability to receive honest
answers to their questions. I will also look at the value of personal engagement
between the child and the caring team. Finally, I will look at literature as a promising
tool in the dying child's understanding of death and loss. However, I will not be
looking at the social world that is created for the dying child or the emotional help
children might need to get through this process.4

On a final note, I will look at the child as separate from the unit of family. I am
doing this for the reason that dying children are facing a trauma that has already
caused them to disengage from their family. They are In the hospital and by this very
fact have experienced separation from the family unit and isolation from other

children. 5 In this thesis, I will focus my attention on the child's development and

 

3i will primarily be looking at literature as an aid in this understanding
process.

480th of these are interesting questions, but there is not enough time to explore
them in this thesis. For more information on these topics refer to work done by Myra
Bluebond-Langer in her dissertation and several of her books.

sBauer, David. "What of the Dying Child?" In Death in the Life of Children, ed.
Kaoru Yamamoto (Arizona: Kappa Delta Pi, 1978) 83.

4

their understanding. This understanding certainly does not occur in a vacuum. The
child is exposed to what other people think and understand, but I have chosen not to
look at the family context for several reasons. The most important reason is that much
work has been done on the family and how they, as a unit, deal with the crisis of death
and dying.

Clare Mulholland once said that there is nothing worse than not knowing what
you already knew. 6 Let us not sentence our children to this fate that may be worse

than death.

 

6 Clare Mulholland, 1973.

Chapter 1

REVIEW OF SCHOLARLY LITERATURE

My review of the scholarly literature is based on four disciplines. These are:
child development, philosophy, nursing and children's literature about death and
dying. I have taken this interdisciplinary approach to this thesis because I think that
it is important to keep in mind that children, even those that are facing death, are
trying to make sense of a world that is complex and mutt-faceted. While there have
been few studies and little written about communication between a child and their
provider, it is fairly plausible that some of the issues I am looking at may have been
explored in other disciplines. A more complete study of dying children and the
benefits of open relationships would certainly include a review of scholarly literature
in anthropology and sociology. However, those disciplines, along with others, are

beyond the scope of this thesis.

Research about children's ability to understand death

We have for centuries been thinking and writing about death and dying, but
these discussions have mostly concerned adults. Studies that have adult subjects may
seem irrelevant to this discussion of children dying from terminal illness, but it has
been noticed by Kenneth Doka that studies done on adults may show us something about
children. Ideally we would focus our attention on studies done on dying children, but
very few of these studies exist and it is likely that they never will. 7 Despite these

impediments, we can make sense of some of these data as they apply to

 

71 suggest this because it is almost impossible to be allowed to study children,
especially those dying from terminal illness. Organizations that are designed to protect
research subjects are not likely to allow studies on children, especially if those studies
are dealing with issues of death and dying.

children when we realize that "as a general rule, a child's struggle with life-
threatening illness is both similar to and different from that of an adult." 3 It is hard to
see how it is possible for the child to have experiences Similar to an adult; after all
children are not just small adults. However, Doka noticed that a child's death

experience is similar to that of adults in the ways of coping with the physical and social
aspects. Doka noted that children were well aware of and able to experience loss of the
physical, in similar ways to adults. This means that dying children and adults coped
with body function loss in similar enough ways that it is possible to use studies
conducted on adults to explore children.

Although there were those similarities, Doka noted that adults and children
were different in the ways of available communication and development issues.
Children, especially those who are young, have fewer words to draw from for active
communication. On the other hand, adults are able to communicate more clearly
because they have more words available. Also, children are still developing in a
number of ways. Children are physically growing, gaining motor skills and strength
and are experiencing much mental growth. Adults, while they may be experiencing
some minor mental growth, are fully matured beings. Because of these differences, it
was an important time for children and those people interested in their development,
when studies involving children began.

However, it was not until the 1930s that this really happened. Even then there

were few studies, but beginning in the 1970s intense interest began in the study of

 

8Doka, Kenneth. ”The Cruel Paradox: Children Who Are Living with Life-
Threatening Illnesses." In Handbook of Childhood Death and Bereavement, ed. Charles
Corr and Donna Corr, ( New York: Springer Publishing Co., 1996) 94.

7

children and how they might come to understand death. 9 Yet, despite the number of
studies in the 70s and 80s, there has been little progress in this area of child
development. There are several reasons for this lack of progress, though most have
something to do with the fact that results of these studies are confusing and the models
of the studies usually begin with assumptions that may not be accurate. For example, in
the majority of these studies, "it has been generally assumed that children's concepts of
death develop in accordance with Piaget's general theory of cognitive development." 10
This may be an accurate assumption for well children and some sick children, but
many people call the development stages, which Piaget's claims occur in all persons,

into question.

Several experts in the field of child development, who have done studies of
this sort, including Flanel and Gelman and Balllargeon, believe that the "process of
concept development in general is more complex, extends over a longer period of the
life span and results In more varied and individualized outcomes." 11 So, at this point
we are left with little understanding on how the child actually understands death and
dying. This becomes more clear when we look at how the ill child, especially the
terminally ill child, understands these concepts.

There have been few studies done on the understanding a child who is sick or
terminally ill may have about death. Yet, in these studies and others (those on children
that are well) we can notice one relationship that helps us to understand how the child

dying from a terminal illness may develop an understanding of death that is far more

 

9Speece, Mark and Sandor Brent. "The Development of Children's Understanding
of Death." In Handbook of Childhood Death and Bereavement , ed. Charles Corr and
Donna Corr (New York: Springer Publishing Co.,1996) 29.

10Speece, ”The Development of Children's Understanding of Death” 43.

“Flanel 1985 and Gelman and Baillargeon 1983.

8

mature than the understanding the average child may have. This relationship shows
that more experienced children, those that see and think about death more, were more
likely to have mature concepts of death. The first clinician to really suggest this about
ill children was Myra Bluebond—Langer who stated that children who had experience
and exposure to life threatening illness may have a more mature concept of death than
held by healthy children of relatively the same age.12 Since the time of her study, in
197 8, six major studies have been done, but the results are equivocal. Studies done in
1984 by Fetch and in 1990 by Groolman found a significant relationship between a
mature concept of death and life experience, but the other four studies showed mixed
results or no relationship. 13 Further studies have done little to show how the child
with terminal illness understands death, but have indicated that children with life
threatening illnesses are aware of what is going on in their bodies, even when parents
and caregivers try to conceal or withhold that information. 14

At this point, even with the studies that have been conducted on well children,
dying children from other cultures, and dying adults we are left without a definite
answer to how the child with illness or terminal illness may develop an understanding
of death. However, on the studies that have been conducted, it is plausible that children
who are terminally ill do have a more advanced notion and understanding of death. I
suggest this, because it seems plausible that children who are constantly exposed to
death and dying would be better able to grasp these concepts because they are no

longer abstract concepts to them. These children have spent much of their time in an

 

12BIuebond-Langer, Myra. "Awareness and Communication In Terminally Ill
Children: Pattern, Process, and Pretense," (Diss. University of Illinois, 1975).

13Fetch 1984 and Groolman 1990. as described by Speece, "The Development of
Children's Understanding of Death” 49.

14Doka97.

9
institution. They make their friends on the hospital ward and their friends die there.

These children hear about and witness death and are certainly affected by that. My
intention is to shed light on the child living with terminal illness in an institution so
that it is clear that their experiences do affect their understanding. With the help of
the studies conducted in the past and careful consideration of how those studies may
relate to the dying child, I plan to examine the following questions: should we, health
care professionals, acknowledge that death is approaching for the child? Do children
sense that they are dying, even without our explicit words? Do we rob children of their
right to come to a finis (end) after having possessed an end (telos), if we do not tell
them what they ask to know? Are children not able to make end of life decisions
without accurate information? These questions seem to be of utmost importance, if we
really want to help dying children. We must look at these questions, despite the
confusion we have seen in the outcomes of various studies. And, we must decide what
children need from us, so that they can reach their end. In the body of this thesis, I
will suggest that honest relationships, that involve personal engagement, will provide
the child an appropriate platform from which they can ask questions and receive

honest answers.

Work on Honesty in Health Care

In order to talk about honest relationships we must take a look at Sissela Bok's
book, Lying: Moral Choice in Public and Private Life. 15 From this look at truthfulness,
trust and the consequences of lying, we can come to some conclusions about the value
of honest relationships. The next step will be to see if this relationship is possible in
the medical setting. To establish this, we must turn our focus to philosophy and truth-

telling in the medical setting.

 

15Bok, Sissela. Lying: Moral Choice in Public and Private Life, (New York:
Pantheon Books, 1978).

10

In the world where doctors control the information and patients are only able to
possess that information if the doctor chooses to disclose it to them, it is important to see
if doctors do in fact disclose crucial information 16 and if they do not what are their
reasons for not doing so. Until the 19608 the pattern was that doctors did not disclose
information (88% of physicians followed this policy of nondisclosure) because they
feared that patients rich with the knowledge about their terminal condition would
"commit suicide, not cooperate with treatment or become depressed."l7 Interestingly
enough at the same time a study, by Samp and Currei, that surveyed cancer patients and
their families, showed that 87% believed that patients should be told their diagnosis and
prognosis.18 It was not until the end of the 19703 that physicians started to change
their beliefs about disclosure practices. At this point in time, 9896 of physicians
reported that their usual policy was to tell patients their diagnosis.19 This is obviously
quite a dramatic change from the 12% that had, the usual policy of disclosure in the
1960s. Unfortunately this dramatic change in disclosure practices only occurred if the
patient was an adult. It turned out that physicians clearly had a different policy when

it came to disclosure with a child patient. Novack, et al. found that 1896 of a sample of

 

16] suggest that crucial information is that about diagnosis and prognosis, but
also any other Information that the patient might request.

17Beauchamp, Tom and Robert Veatch. Ethical Issues in Death and Dying. 2nd ed,
(New Jersey: Prentice Hall, 1996) 64.

18Samp, Robert and Anthony R. Currei. "A Questionnaire Survey on Public
Cancer Education Obtained from Cancer Patients and their Families.” Cancer 10 ( 1957):
382.

19Novack, Dennis, Robin Plumer, Raymond Smith, Herbert Ochitill, Gary Marrow
and John Bennett. " Changes in Physicians' Attitudes Toward Telling the Cancer
Patient.” Journal of the AMA 241 (March 1979): 898.

11

219 physicians were less likely to tell children their diagnosis. 20 It seems that the
reasons for this discrepancy in disclosure practices between adults and children had
much to do with age, intelligence, and emOtional stability of the patient.21 These
results are not surprising and are easy to understand, though it is not clear how
physicians, in these studies, were able to gauge the intelligence or the emotional
stability of patients. However much we look at the changes in the practice of disclosure
it is clear that the children are left out of this movement. This may be due to the very
protective nature we all seem to have toward children or may be just plain unfair to the
young patient.

Philosophers and lay persons stand on both sides of this issue about telling the
available truth (for the standard reasons: see chapter 2). However, we notice again
that we must look at this issue first from outside the realm of the child dying from a
terminal illness. It is unfortunate that we must do that, but the reality is that,
"although references to children sometimes occur in the context of discussions of
particular topics, those who have proposed ethical theory have, by and large, ignored
children."22 After a look at honest relationships and truth-telling in the medical
setting, we will turn our attention to children and how they develop the skills to
understand abstract concepts and how an honest and supportive relationship might
benefit them. There is unfortunately a lack of literature available to begin this type of
discussion. Therefore, I will spend much of this chapter laying out the important parts
of cognitive development for all children and using some of the more salient ideas

given to us by the nursing field.

 

20Novaclt, et al. 899.

21Novack, et al. 900.

22"Children and Ethical Theory." Encyclopedia of Ethics. 1992 ed., 137.

12

Work on the use of Literature in Communicating with Children

Currently there is a lack of available information and studies that attempt to
show the positive effect that literature may have on the dying child's understanding of
death and dying. Therefore, this section of the thesis will draw from information on
the use of literature in aiding the moral imagination of adults and the new
biobliotherapy movement.

Bloliotherapy is a tool to help people solve problems and show them that they
are not the first to encounter such a problem, together with Martha Nussbaum's
proposal that the literary imagination has some value in aiding our thinking about
concepts that are abstract to us, points us to the notion that literature may have some
value for the dying child. However, there is little literature designed to teach a child
about their own death. It is clear that, despite the fact that some people have looked at
the merits of literature, we are left with questions about the value literature has for the
dying child. Along with looking at honest relationships, the possibility of such a
relationship in the medical setting, cognitive development in children, and the value
of children's literature, I will constantly be making it clear that the most important
aspect of relationships with dying children may be the personal engagement that

allows for honest answers to sometimes difficult questions.

Chapter 2

WHAT'S 80 GREAT ABOUT THE TRUTH?
What tormented Ivan llych most was the deception, the lie, which for some reason they
all accepted, that he was not dying but was simply ill, and that he need keep quiet and
undergo a treatment and then something very good would result. He however knew
that nothing would come of it, only still more agonizing suffering and death. This
deception tortured hime their not wishing to admit what they all knew and what he
knew, but wanting to lie to him concerning his terrible condition, and wishing and
forcing him to participate in that lie. Those lies- lies enacted over him on the eve of
his death and destined to degrade this awful solemn act to the level of their visitings,
their curtains, their sturgeon for dinner- were a terrible agony for Ivan llych.

-Leo Tolstoy, The Death of [van llych.

In this chapter we are going to take a look at the basic philosophical arguments
for and against truth telling. This chapter will lay out the ground work for the next
three chapters. Chapter 3 will deal with the nature and value of open relationships.
Chapter 4 will look at the cognitive development of the dying child and make the claim
that dying children may need the personal engagement set up in honest relationships.
Finally, in chapter 5, the focus will turn to an appropriate tool that might aid in a
dying child's understanding of death and dying. Now, we turn to truth. Recall that we
must first look at truth without any discussion of children. later, we will have to ask if
any of the reasons for telling or not telling the truth can be used to deal with dying

children.

To Tell the Truth
On one side of the issue about the importance of truth-telling and its value, are
those people who believe that it is simply wrong to lie. They claim that honesty is an

inherent duty of morality and is not dependent on whether telling the lie or the truth

l3

14

does any harm. 23 This is an absolutist position which says that telling the truth is
always more important than the consequences of that truth. These people make the
claim that to tell the truth is a duty. This means that in any relationship or practice the
truth must be told or the practice fails. This way of looking at truth and its value may
work in the world that has little to do with children and even less to do with Illness and
dying. It goes too far for my purposes, but cannot be easily dismissed. We cannot
dismiss this because in many situations a veracious person would be an ideal
participant. Just imagine a situation where it was impossible to count on another
person's word or action, and you can easily see how a person who is able to be honest,

truthful and accurate would be ideal, at least in that respect.

On the Other Side

On the other extreme is the thought that people are entirely unable to handle
any of the truth, but this view does not seem to be held by anyone who has a reasonable
idea about the value of truth or the nature of human beings. Instead, people who
disagree with the idea that the truth should be told no matter what the costs, tend to be
very concerned about the possible negative consequences that disclosure might have.
Most people who hold varying philosophical beliefs fit on the spectrum between telling
the whole truth and complete nondisclosure. Here I will be discussing consequentialist
ideas about truth telling, though there are also non-consequentialist ideas for this same
type of limited disclosure.

Sidgwick claims that the truth may cause harm and we must take that into

consideration, but we must also ”weigh the gain of any deception against the

 

23’This is like the views expressed by Immanuel Kant.

15

lmperilment of mutual confidence involved in all violation of truth.” 24 He justifies
such a statement on consequentialist grounds, and states that in order to act in the

right way, we must compare the consequences of lying to those of not lying in each
particular case. Others agree with Sidgwick when they claim that generally ”harms
done by lying and failing to speak truthfully are greater than the expected gains."25
W.D. Ross agrees with Sidgwick's proposal that both duty and consequences matter.26
These philosophers and many more seem to all be saying something similar. They are
stating a need for truth, but hold that truth need not be complete and is open to
interpretation. Sissela Bok states that "the whole truth is out of reach. But this fact has
very little to do with our choices about whether to lie or to speak honestly, about what
we say and what we hold back.” 27 I agree completely: Complete information about
illness and the processes the body would go through during that illness would be
impossible information to give. 'However, giving known information in a completely
truthful way is not absurd unless the patient cannot handle that information or does
not want it. Additionally, if patients want and can handle the truth, then there must be
some practical or operational reasons for telling the truth. These reasons have
something to do with gaining patient cooperation and giving patients some kind of
control of their lives. There is also the possibility that when patients are misinformed
or lied to they lose complete trust in their practitioners and become suspicious of all the

care that is given to them.

 

24Sidgwick, Henry. "The Classification of Duties of Veracity.” Methods of Ethics
(1907),312.

25Cabot, Richard. ”The Use of Truth and Falsehood in Medicine: An Experimental
Study." American Medicine 5 (1903) 344.

26 Ross, W.D. The Right and the Good, (Oxford: Oxford University Press, 1930) 28.

2730k 4.

16

Another Important Question

Here we are faced with a completely new question. Do patients really want to
know the truth? Experts stand on both sides of this issue as well. Some say that patients
do in fact want the truth and the harm that might result from such disclosure is much
less than physicians think.28 Others say that falsehoods may be wrong, but full
disclosure is not needed and that the physician has a right to withhold information
from the patient for the good of that patient.29 Along these lines, some experts note
that even when the patient seeks the truth, this may be the last thing that they really
want. 30 So far we are left with a dilemma. We still are not aware of what value truth
telling might have for children and we still are unaware of what patients want. The
statements and arguments on both sides of the issue are pretty convincing and none of
them can be easily dismissed. Up until nowwe have been looking at adult patients, for
which the increasing ethical consensus is that the truth should be made available.
However, there. remains disagreement about the degree of truth that should be given
and the detail with which information should be supplies. Now we will turn our focus
to the child dying from a terminal illness and decide which arguments and statements

fit that situation best.

 

288olt 13.

29Worthington, Hooker. Physician and Patient: Or, a Practical View of the
Mutual Duties, Relations and Interests of the Medical Profession and Community, (New
York: Baker and Schribbner, 1849). 359. Recall that this was written well before the
doctrine of Informed consent.

30 Meyer, Bernard. "Truth and the Physician." In Ethical Issues in Medicine: The
Role of the Physician in Today's Society, ed. 13. Fuller Torrey, (New York: Little Brown
and Company, 1968) 167.

17
Do These Reasons Fit For Children?

Lantos makes it clear that we are now moving into practically uncharted
territory with his statement, "as with most modern bioethics paradigms, all bets are off
when it comes to pediatrics." 31 He is right about this, but then makes the claim that, "if
it is a good thing to tell children the truth, it is not for the same practical or operational
reasons we tell adults."32 I disagree, however his thinking is in line with the idea that
children are going through similar, but not the same, things as adults when they face
death. However, if we come to the conclusion that it is our moral duty to tell adults at
least some of the truth, then we must want to gain their cooperation or empower them
and give them some control of their lives. I believe that these are at least three good
reasons to tell the truth to adults and may be the same reasons for telling children the
truth. It seems as if it is important that children, as well as adults, cooperate with their
practitioners, continue to have some control over their lives, and have some sense of
responsibility about their health care. Sissela Bok points out that "some level of
truthfulneSs has always been seen as essential to human society." 33 I take this to mean
that this truthfulness is essential to all members of human society. Our human society
does include dying children who may have the same need to hear the truth that adults
possess.

I am not advocating full disclosure. I am sure that in some cases the complete
complex truth could have devastating effects. Imagine a scenario in which the child
begins to ask questions about their illness, but not about death. In this situation, if they

were told that they are about to die, then that might devastate the child and make them

 

31Lantos, John. "Should we Always Tell Children the Truth?" In Perspectives in
Biology and Medicine (Autumn 1996), ed. Richard Iandu, et al. (Illinois: University of
Chicago Press, 1996) 84.

32Lantos 84.

33Bok 18.

18
less willing to cooperate with future medical procedures. I am also convinced that if we

truly want a child to participate in their medical care then we must give them
information. Doka writes, "if the child is going to have a sense of participation and
control in the illness, he or she will need to know what ls wrong and what is likely to
occur." 34 We are practically convinced that adults need this control and have a right to
make choices about their lives and their deaths. Why is that not the case for children?
Aside from the fact that some people have come to believe that "generally minors below
the ages of 1 1-13 do not possess many of the cognitive capacities one would associate
with the psychological elements of intelligent consent." 35 My fear is that the only
true reason we fail to disclose to children dying from a terminal illness is that it is
really hard to be emotionally superficial when everyone is aware of the truth. It
hardly seems clear that children have no need or want of the truth. What does seem
clear is that, "adults own difficulties in dealing with the deaths of children probably
underlies their inclination to withhold information from children."36

I believe that the only conclusions that we can draw from the studies done and
the arguments laid out by experts in their field is that there are truly, ”no established
criteria as to how much to tell children."37 Though I think, in light of the idea that
children dying from a terminal illness may have knowledge about disease that
surpasses the knowledge a well child may have (an idea expressed fully in chapter
four) and keeping in mind that I am not advocating full disclosure, it is fairly possible

to see a need for health care professionals to give "straight answers to straight

 

34Dol<a 97.

35Doka 97. I will Show in chapter four that this fact is highly debatable.

3’6Mohowald, Mary. Women and Children In Health Care: An Unequal Majority
(Oxford: Oxford University Press, 1993) 196.

37Buckingham 70.

19

questions."38 If practitioners make the choice to supply children with the Information
they are requesting, then children might cooperate with their care, be able to have
some control over their lives, and make decisions about their own bodies and health. I
am pretty sure that nobody really knows what each child wants to know, but we should
understand the need some dying children may have for the truth. If that need is not

met some children will be worse off due to our lies.

I am convinced, through my work with children, 39 that even if a child is not
aware that her or she is dying, the child at least knows that something is wrong with
them. The natural reaction to the realization that something Is wrong is to ask
questions. Children want to know why someone is taking their blood, why they have to
stay in bed and even if they are going to die. I have seen how children react when
they know lies are being told to them. I have seen them completely lose trust in the
people that have lied to them. Sissela Bok makes it clear that, "those who learn that
they have been lied to in an important matter are resentful, disappointed and
suspicious." 40 We can easily avoid these negative reactions to being lied to by
answering questions in the truest way possible. I can agree that children may have no
need for the statistics of success and failure rates that we so readily supply to adults, but
children do have needs for information. This information can be given to children in
many ways and may need to given in several ways in order for the child to fully make
sense of it in relation to what they already understand in the world. In the next three
chapters, I will lay out a type of relationship in which it is possible for children to ask

questions and receive honest answers, I will suggest that the dying child is capable of

 

38Cabot84.

39 This work has been with both dying children and those who have
experienced the death of a loved one.

408olt 20.

20

understanding answers about death and dying that caregivers may give them, and I
will talk about the importance of personal engagement in the relationship and in all

tools that aid in the child's understanding of death and dying.

Chapter 3

AN ATMOSPHERE OF OPENNESS

Open Relationships

In order to see how open relationships might be important for dying children
and might aid in their ability to ask questions about their health care, we must first
look at what open relationships are. Relationships are talked about in a number of
social and professional areas, but for the purpose of our discussion we will focus on the
open relationship between the practitioner and patient. There are many potential
problems with such a relationship that will be included in this discussion, but first I
will turn my focus to establishment of an open practitioner/ patient relationship. The
goal in such a relationship is not only disclosure. A more important goal might be Open
communication that exists In a relationship between persons who choose to be truthful,
benevolent, compassionate, caring and courageous. Participates of the relationship
must also choose to act with prudence, exercise phronesis, believe in justice, and retain
autonomy.

The relationship should place both the patient and the caring team on a level

that allows both of them to put themselves in the other person's position. It must be a
partnership that advocates communication and sharing. Active verbal communication
and sharing will provide a platform for an open relationship. Both the patient and the
practitioner should be able to verbally express their hopes and desires and be willing to
share knowledge Openly with one another. 41 Without such aSpects, it seems Impossible

that most dying children would be comfortable enough to

 

41Other types of communication, including nonverbal, may also be used in an
open relationship. However, nonverbal communication should only be seen as an
additional aspect in the interaction between the practitioner and the patient.

21

ask questions to the practitioner. The health practitioners' goal is the establishment of
a relationship that affords the patient an opportunity to ask questions and receive
honest answers. An additional goal of the relationship is to create an atmosphere
where neither party feels as if information is being hidden. These are probably lofty
goals in all types of relationships and are definitely hard to achieve in the medical

setting.

Establishment of the Relationship

In the medical setting, the practitioner has a certain power over the patient.
This power is grounded in medical education and the information dumping that I think
is common in the medical discourse. Giving all the information, even when it is not
requested, may be telling the truth, but is does not aid the patient in their
understanding of their condition. However, information dumping does allow the
practitioner to remain emotionally distanced from the patient. Education about the
biology of illness, that is not shared, continues to allow the practitioner to distance
themselves from their patient. Naturally the practitioner knows more about the
biology of illness than the patient. If the team chooses to dump all the biological facts
on a patient, without being asked for them, or fails to give information when requested,
then that patient is left with no power over his or her own illness. Sissela Bok points
out that, "lying to patients has,..., seemed an especially excusable act." 42 Additionally,
the medical community seems to avoid the issue of truth entirely. In fact, the A. M. A.
Principles of Ethics mention little about when or if to tell the truth. The only mention

of truth-telling is embedded in discussions about informed consent.43 The idea of

 

42Bok 222.

43American Medical Association, Code of Medical Ethics, 8.08 Informed Consent,
1997. ,-

23
veracity is absent from virtually all medical oaths and codes. The Hippocratic oath,

which so many physicians use to explain their actions, makes no mention of
truthfulness. 44 We have to question this lack of direction about when or if to tell the
truth in medical care. The lack of direction makes it clear that, "a physician can decide
to tell as much or as little as he wants the patient to know, so long as he breaks no

laws. ”45 The truth is that there are no legal statutes that mandate what a practitioner
must tell a patient, but that does not mean that there are no principles that govern such
an action.

There seem to be some fundamental principles in medicine. Two of these
principles are discussed by Sissela Bok; these are the principles of beneficence and
nonmaleficence. 46 To these principles, I add: autonomy, truthfulness, benevolence,
compassion, courage, prudence, phronesis, and justice. The most important may be
beneficence and truthfulness. Fundamental to the practice of medicine is doing good.
Beneficence is basically preventing harm, removing harm and doing good even at
some cost or risk to oneself. This idea allows the practitioner to see the patient as a
complex being, with feelings and spirituality. The important aspect of beneficence for
this discussion is that what is good for a patient is that which is defined as good by the
patient. 47 The only way to understand what the patient believes is good is to
communicate with that patient. For a dying person, it may be very important for them
to decide what happens at the end of their life. They may want to make decisions about
who should get their property, what kind of burial or casket they want, and may have

the need to repair relationships. If we are beneflcent and if we look at patients with

 

44Bok 223.
45M 224.
“Bok 222.

47 Pellegrino, Edmund D. and David C. Thomasman, The Virtues in Medical
Practice, (New York: Oxford University Press, 1993) 64.

24
the knowledge that they are more than sick bodies, then we make sure that they are

cared for emotionally as well as physiologically.

The Other significantly important aspect of the relationship is truthfulness.
We looked a bit at trust in the previous chapter. Here, we revisit it only to remind
ourselves that truth must be delivered in such a way that patients can openly receive it
in an understandable way. Many times practitioners deliver information with more
medical jargon than the average person can understand. This is one way to deliver
asked for information in such a way that practitioners can remain distanced from the
patient and still feel as if they have answered questions. The practitioner is being
honest with the patient, but is not doing anything to benefit that patient's
understanding of his/ her condition. This type of communication is ineffective in
helping the patient to make sense of their world. If practitioners truly want to help
some patients, then they usually have to communicate effectively with them.
Additionally, practitioners must engage with patients in ways that are appropriate for
each patient's level of understanding and ability to use the information sought.
Practitioners must remember that some patients cannot handle some information. It
would be harmful to give information to patients in ways in which they could not make
sense of the information. Harm also comes to the patient when practitioners fail to be
benevolent in their practice. Benevolence is the virtue that disposes the practitioner to
be committed to the high ethical standards for which medicine is known. 43 The harm
continues without compassion which suggests the ideas of cosuffering, of fellowship in
the experience, of comprehension of ”what it's like," and even of taking upon oneself
something of another's pain and making it one's own. 49 In order to avoid harm, the

participants in the relationship must also have courage and exercise prudence.

 

48Drane, James F. Becoming a Good Doctor: The Place of Virtue and Character in
Medical Ethics, (Kansas City: Sheed and Ward, 1988) 33.

49Pellegrino 79.

ZS

Courage and prudence are virtues of practice. It takes courage to overcome our
presuppositions. More importantly, it takes courage to engage in an open relationship
where one's feelings and thoughts are often exposed. It also takes prudence to engage
in such a relationship. Prudence is the exercise of practical judgment. 50 It is stepping
back and looking at the whole person and then making a judgment about what is best
for that person. This virtue, along with the others, must be carried out with phronesis
and justice. Justice is simply rendering what is due to others. 51 Phronesis, as
captured by Aristotle, means practical wisdom. 52 It is the capacity for moral insight.
Phronesis is one's ability to gain understanding about how to carry out the best wishes
of another person. Each of these components to an open relationship is designed to
help prevent harm. I believe that they do so, but to understand how we must turn our

attention to what harm is and how we might be able to avoid it.

Harm

To avoid harm we must first figure out what it is. The Encyclopedia of Ethics
tells us that, " a necessary element in all harming is that it have an adverse effect on
someone's interests.” 53 This means that in order to harm persons we must be doing
something that keeps them from achieving their goals or receiving what is owed to
them. Therefore, we must come to some conclusion about the goals that a patient might
have in the relationship with their practitioner. Sissela Bok noted, in her discussion of
people with terminal illness, that ”for the great number of patients the goal must be

disclosure, and the atmosphere of openness."54 Notice that the goal is not only

 

50As offered by Mark Hanson- Associate for Religion- The Hastings Center.
51Pellegrino 92.

52Pelligrino 84.

53Encyclopedia of Ethics 437.

54301: 239.

26

disclosure. The goal is also the atmosphere of openness that may come from an honest

' relationship. Here Bok is not saying that patients should be told information about
their illness that they may not want; she is addressing the need some patients might
have for open communication. Certainly it would be a problem to give information to a
patient that has made no request for such information. In fact giving information in
this way might be harmful. Maybe sometimes it is better for some patients to live in
denial for a while. Maybe the truth is more than some patients can handle. For those
people, the news should not be given. People have the right to receive information
when they request it and not receive information when they have not asked for it.
Personal autonomy does not end when a person is diagnosed with a terminal illness.
Patients with terminal illness still have the ability to make autonomous decisions about
their bodies and their health care. I am convinced that patients have the same need for
open communication as people outside of the hospital.

The argument against this notion is that even if ordinary people may
understand what is spoken to them, this is not true for patients. 55 This may be true;
some patients cannot understand some information, even when they ask for it. But,
some patients can and do. Some patients recognize that there is something wrong with

their bodies and recognize how practitioners care for them when death is imminent.

Personal Interaction
In much of the literature, it is noted that the primary goal of those who choose
to work with patients is for those patients to get well.56 Unfortunately, in the case

where the caregiver is treating and caring for a person dying from a terminal illness,

 

55301: 227.

56Rothenberg, Michael. ”Problems posed for staff who care for the child.” In
Care of the Child Facing Death, ed. Lindy Burton (London: Routledge and Kegan Paul
Ltd.,1974) 39.

27
this goal cannot be reached. According to Michael Rothenberg, a natural impulse, that

all of us experience when we are faced with the dilemma of not being able to reach our
goals, is to withdraw from the situation.57 If he is correct, then we are faced with a
problem. The problem is that a relationship probably cannot survive when one of the
participants is withdrawing from the other. Patients seem to have the ability to
recognize that people are withdrawing from them; a phenomenon that occurs all too
often in the medical setting. We can see in the literature that people write of death as
”a battle lost.” 53 We see that ”death is to be fought with any means possible.” 59
Through this struggle to keep patients alive, there is little room for the dying person to
be cared for in such a way as to be able to deal with the facts of life and untimely death.
This becomes an even bigger problem when we turn to children whom many of us
assume cannot even begin to understand their diagnosis and prognosis and have been
excluded from most literature about relationshipsin the medical setting. In the next
chapter, I will focus my attention on this issue of what dying children may be capable
of understanding. Here, I will try to make some sense of the value of honest

relationships with dying children.

Practitioner/Child Patient Relationship
There seems to be some value in carefully listening to a child's questions
and providing honest answers to those questions, but what is the value? Are some

children, especially those who are dying, better off because they have open

 

S7Rothenberg 44.

58Gordon, Bianca. ”An Interdisciplinary Approach to the Dying Child and his
Family,” In Care of the Child Facing Death, ed. Lindy Burton (London: Routledge and
Kegan Paul Ltd., 1974) 143.

59Easson, William. The Dying Child: The Management of the Child or Adolescent
Who is Dying (Illinois: Charles C. Thomas Publishers, 1970) 91.

28

relationships with their practitioners? These are tough questions that we have done a
poor job of examining. In the current literature, authors spend a great deal of time
talking about the doctor/ patient relationship as it pertains to adults. What they fail to
discuss is the more common relationship between the nurse and the patient and any
sort of relationship between a dying child and their practitioner. So, here we must
come to some conclusions about the value of an open relationship with dying children
by recalling what we know about dying children, what we know about their worlds and
what we have come to understand about communication and sharing. My belief is that
an open relationship will allow each dying child to make sense of the world, not be
alone as they go through this discovery, and retain some power over their lives.

Most practitioners and patients who engage in open relationships find that this
engagement needs some degree of emotion, personal interest, individuality, and mutual
knowledge. 60 The two or perhaps more parties of these relationships need some
emotional connection so that they can share the burdens of illness; they need to have
personal interest in one another so they can share their hopes and desires; they need
to maintain individuality so that one party does not command too much from the other:
and they need to share mutual knowledge so that they can help one another
throughout the sometimes tragic experience of death. This entry in the Encyclopedia
of Ethics is focusing on adult relationships, but I do not see why these same four aspects
of open relationships would not be important to dying children. Dying children are
trying to make sense of a world that is full of the horrors of needles, medicine that
makes them feel sick, and the inevitability of death. It seems almost impossible to
imagine how a child could make sense of such a world unaided. The aid that these
children need might be found in an open relationship that involves emotional support,

personal interest, and mutual knowledge. Earlier we talked about the power that comes

 

60Encyclopedia of Ethics, ”Personal Relationships," 956.

29
from knowledge: the power that comes from medical information that is not shared.

Isn't it possible that children need some of this power so that they can make sense of
their world? Sissela Bok noted that one nurse found that, "from personal
experience...patients who aren't told about their terminal illness have so many verbal
and emotional questions unanswered that many will begin to realize that their illness is
more serious than they're being told.."61 If patients are left with these unanswered
questions, then are they not in some sense left to die alone? I think that they are left to
die alone and, I believe, that this aloneness is more harmful than we know. I cannot
think of anything that does this more than to take away a person's right to information
about themselves. It may be difficult to gauge what a patient wants to know,
particularly if that patient is a young child, but we can all but eliminate this problem if
we provide a relationship that allows for open questioning and answering. This type of
relationship, the same type of relationship that we believe is effective for adult
patients, may prove to be effective for child patients as they make sense of their world.
If practitioners truly want to help some children, then they probably have to
communicate effectively with them. Additionally, practitioners must engage with
children in ways that are appropriate for each child's level of understanding and
ability to use the information they are asking for. Practitioners must remember that
some patients cannot handle some information. This is particularly true for some

children; I deal with this issue in the next chapter.

Potential Problems
The type of open relationship that I believe practitioners should try to have
with their patients has potential problems. The main problem is that it is hard to judge

what patients really are able to understand and what they really want to know. I

 

Glsok 225.

30

believe that the solution to this problem comes from the relationship itself. An open
relationship will most probably provide the opportunity for the practitioner to learn
how the patient is dealing with the information already possessed and the patient's
ability to deal with additional information. Here I am not saying that practitioners
should withhold information just because they do not think that patients are ready to
hear that information. Rather, I am pointing out the need for practitioners to supply
asked for information in a way that patients can understand and accept it. This may
mean that the practitioner may have to explain the facts of prognosis in various ways
to the same patient. The time should be taken to do so. In my experience as a patient
and in working with children, I have come to understand that people rarely ask for
information that they are not ready to hear. I do some volunteer work with grieving
children and have noticed, on numerous occasions, that they ask detailed questions
about the death of their parents only when they "are prepared to hear the answers.
Health care practitioners must trust that children can gauge what information they are
ready to hear and then supply that information when it is requested. An additional
problem may be that some people assume that children, that are told the truth about
their diagnosis and prognosis, will be robed of hope. I disagree, children that are
given information that they request can still have hope. They may have a different
type of hope, but it is hope none the less. Children that are given information when
they request it have the true hope that comes from knowing you are not alone and you
have some control over your life.

The argument that children are not among those people that can understand
infOrmation about their conditions remains. I disagree and hope to show that dying
children can understand honest answers to their questions. In order to look at this
issue we must look at cognitive deveIOpment in children and discover what children

may be able to comprehend.

Chapter 4

COGNITIVE DEVELOPMENT: HOW A CHILD DYING FROM A TERMINAL
ILLNESS UNDERSTANDS DEATH

He was a truly remarkable young man, mature beyond his years. But,
then critical illness has a way of maturing people.

-Marilynne Sequin, RN.

Cognitive Development: What is it?

Cognitive development as defined is the "intellectual development over time of a
child especially in skills such as thinking, perceiving, reasoning and judging." 62
Studying cognitive development is extremely difficult because it has many components.
However, in this thesis, I will focus on only some of these components. I will be
looking at learning and more importantly how one gains information about the world.
Recall that I am focusing on children aged seven to ten who are dying from a terminal
illness. These children are sure to be gaining information that is unlike the
information gained by the average healthy child. This is, however, not clear in studies
that have been done on the cognitive development of children, mostly because we have
failed to do many studies on the child dying from a terminal illness. I will also attempt
to show that, based on what we know about cognitive development, the child dying
from a terminal illness might have a higher cognitive level about death and dying
than a healthy child.

It has been noted that children learn what they live. This means that children

are better able to grasp those concepts with which they are most familiar.63 Based on

 

62Leve, Robert. Childhood: The Study of Development, (New York: Random House,
1980) 219.

63Ileve 187.

31

32

this notion, a child living in a world filled with illness and death probably grasps these
concepts better than a child who has never seen or experienced illness and death.
Childhood development specialists have also noticed a correlation between intelligence
and one's experiences. 64 We have come to understand that children are able to acquire
cognitive thinking processes at different rates and in different times of their
development, yet all children seem to need to acquire at least the following three
processes before they can make sense of their world. The processes are: first, the child
needs to be faced with new information or the need to redefine previously held
information, second, the child needs to be able to transform that information so that it
can be used in new situations and third, the child must be able to evaluate the new
learning to make sure that it fits accurately into their world view."5 Once a child had
gained these processes, then the child should be able to think about the world they
experience in such a way that they can acquire and use information.

Much of what we know about cognitive development and the
assumptions for many of the studies I have been referencing have come from the work
done by the Swiss psychologist, Jean Piaget. Piaget, in his detailed look at cognitive
development, attempts to answer the basic question of "how does the simple infant
gradually develop into an adult who is capable of abstract reasoning?" 66 Piaget
predicts that children, at least those that I am talking about, are in what he calls the
concrete operations phase. In this phase the child begins to conceptualize in a
concrete way. They think logically, can classify things and develop the use of

elementary logic.67 The child can now organize their world based on this logic and see

 

64am 188.
65Leve 225.
661m: 196.

67Leve 320.

33
where things fit. Piaget implies that a child of this age and developmental level is

probably unable to view or understand the more abstract concepts in our world. This
means that they, at the age of seven through the age of eleven, could probably not
grasp the concept of death in a way that we do as adults. Piaget's claim is that one does
not begin to have genuine conceptual operations until one is close to the age of
puberty. (’8 These ideas suggest that children dying from a terminal illness might be
able to understand the concrete aspects of hospital care and procedure, but they would
most likely be unable to grasp ideas about death and dying in the way that adults do.
From discussions with children and those people that care for them as well as
some of the more salient aspects of studies done on children, it is obvious that children
do think about and understand the more concrete aspects of being ill. Myra Bluebond-
Langer found, through her research with dying children, that "the children knew that
the disease was a series of relapses and remissions, of 'good times and bad times,’ against
a back drop of bone pain, headaches that did not go away with aspirin, hemorrhaging
that never seemed to stop, constant weakness, anemia, and infections that required
hospitalization."69 These children were at least aware of the physical changes that they
were experiencing, but were probably aware of much more. In Bluebond-Langer's
study she noted that, "the leukemic child acquired a great deal of information about the
hospital, staff, rules and procedures; about the disease, its treatment, process and

prognosis, before he died." 70 The dying child was immersed in the routines of the

 

68Kastenbaum, Robert. "The Child's Understanding of Death: How Does it
Develop?" In Explaining Death to Children, ed. Earl Grollman (Boston: Beacon Press,
1967) 97.

69Bluebond-I.anger, Myra. ”Awareness and Communication In Terminally Ill
Children: Pattern, Process, and Pretense," (Diss. University of Illinois, 1975)210.

70Bluebond«-I.anger, Myra. "Awareness and Communication In Terminally Ill
Children: Pattern, Process, and Pretense," 213.

34
hospital and picked up various kinds of information that could affect the child's

understanding of the more abstract concepts of death and dying. Because these
children are so immersed in the various aspects of life in the hospital, they might also
become immersed in ideas of death in the hospital. If this is true, then these children
might be able to reason about abstract concepts of death in more advanced ways then

the average healthy child who is not exposed to death and dying.

Views that Cast Doubt on Piagetian Theory

Piaget‘s model helps us to understand that all children, despite their different
life patterns, are at some point able to deal with the more concrete aspects of the world.
However, because Piaget never looked at dying children it may be inappropriate to use
his model to look at the dying child. I believe that the world of the dying child is
different from that of the well children. Furthermore, researchers who have studied
Piagetian theory and then tried to see how it fits dying children have seen that the
theory is not always very accurate for some children.

Studies have shown that, ”even the young child has begun to enjoy the 'world of
ideas' on at least an entrance level." 71 Also, it is noted that, "from approximately the
age of five, the child seems gradually to be accommodating himself to the proposition
that death is final, inevitable, universal and personal."72 These children are beginning
to understand the implication of death. They are coming to leave behind the thought
that death is like going to sleep. Some researchers even speculate ”that droughts of
death are intertwined with the total pattern of personality development right from the

beginning, influencing and being influenced by the child's experiences." 73 If these

 

71Kastenbaum 97.
72Kastenbaum 101.

73Kastenbaum 106.

35
researchers' findings are accurate, then it is possible that the dying child age 7-10 is

able not only to deal with the concept of death, but also able to understand what death
is and how death and dying fit in to their view of the world. Furthermore, many
researchers have come to the conclusions that, "if not aware at a conceptual level,
children are at least aware that something is happening to their bodies." 74 If children
are aware of what is going on in their bodies, as the research suggests, then I would
argue that we have some duty to those children. That duty would be to open discussion
with each child in such a way that they can ask questions and we can respond with the
truth.

Robert Coles tells us that children are full of whys.75 They are curious when
they see petechiae 76 on their skin. They wonder why they are having trouble
breathing or why some lab technician keeps coming into their room to take their
blood. Coles tells us that he has learned a lesson through his work; he has found that
"children very much need a sense of purpose and direction in life...." 77 Coles was not
talking about the child dying from a terminal illness, but he speaks a truth of all
children. Just because these children are dying, it doesn't make them any less
children. They have the same need to understand the world. They just have a different
world to understand. They have to understand a world full of death, pain and
unfortunately silence. Myra Bluebond-Ianger found, in her study, that most of the

children were aware that they were dying. She noted that they expressed this

 

74Judd, Dorothy. Give Sorrow Words: Working with a Dying Child, (London: Free
Association Press, 1989) 29. °

7SColes, Robert. The Moral Imagination of Children, (New York: Random House,
1997) 101.

76Condition in which minute hemorrhagic spots, of pinpoint to pinhead size,
develop on the skin.

77Coles 177.

36

awareness in very different ways; some directly said they were going to die; others

were less direct, but all knew something was wrong with them and the world they lived

in.78

I have gone about this chapter trying to make sense of the world in which the
dying child is placed and I have tried to show that they live in a world that is different
from 'the world in which the healthy child lives. If children do learn what they live,
then the dying child does learn about death. However, that dying child learns about
death amidst a host of other development problems. My focus in this thesis is on the
cognitive development of the dying child, but I would be foolhardy to believe that
cognitive development is not effected by the other areas of development. So, now we
turn to some other areas of child development. Unfortunately, here again we have
almost no data on the dying child. Therefore, we will begin our look at the child living
with a chronic illness. Recall that many of the children dying from a terminal illness

were first diagnosed with a chronic illness.

Other Issues in Child Development

Clearly illness affects development, but what is that effect and does that
effect carry to the area of cognitive development? Studies on children with chronic
illness have conclusively shown that in most areas of development the child will be
behind the rest of the children his/ her age. 79 Over the life-span, from infancy
through adolescence, the child may have trouble developing autonomy, learning social

roles, mastering body control skills (especially motor skills), establishing

 

78Bluebond-I.anger, Myra. "Awareness and Communication In Terminally Ill
Children: Pattern, Process, and Pretense,"213.

79Yoos, Lori. "Chronic Childhood Illness: Developmental Issues." Pediatric
Nursing 13 (Jan.~Feb.) 26.

37
independence, and being comfortable with their body. 80 Though each of these may

affect the cognitive development of the child, the profound cognitive effects of long
term hospital care and illness seem to be related to establishing a full set of tools that
help one to understand and use concrete operations. This is most likely due to the
reality that much of the knowledge the child needs to acquire is acquired in the social
setting of the classroom.81 However, this study of children with chronic illness did not
look at how these children were able to understand illness or death. More recent
studies of children and illness have looked at healthy children and what they
understand about illness and death. These studies tend to suggest that ”children's
concepts of illness do evolve in a systematic and predictable sequence consistent with
Piaget's theory of cognitive development.” 32 However, we must remain clear that most
of these studies are done on healthy children and the data might not reflect a dying
child's understanding. The few studies done on ill, dying, or hospitalized children seem
to show different results than those done on healthy children. These studies, although
not all of them, tend to show that there is a definite correlation between a child's
cognitive development and their understanding of illness.83 This suggests that
children who have experienced illness or have been in the hospital are better able to
understand illness causality and other illness concepts. This does not suggest that these
children have an overall higher cognitive level than well children. These studies

make the suggestion that ill children are better able to understand illness. Despite the

 

80Yoos 26-7.
81Yoos 27.

82Burbauch, Daniel and Lizette Peterson. ”Children's Concepts of Physical
Illness: A Review and Critique of the Cognitive Development literature,” Health
Psychology 5(3) ( 1986) 307. and Perrin, Ellen and Susan Gerrity. "There‘s a Demon in
Your Belly: Children's Understanding of Illness,” Pediatrics 67 (June 1981) 848.

83Burbauch 314.

38
reality that there are no published studies, in the area this thesis pertains to, done on

dying children and there may never be any, I suggest that, based on research done on
ill or hospitalized children, studies on dying children might show that these children
have a more established and better understanding of death than do healthy children.

If I am right about what research might show in respect to the dying child's
ability to understand death and we are able to establish a mutually honest and giving
relationship between the practitioner and the child, then it is fairly possible that we
will be able to aid the dying child in their search for meaning about life and death.
Next, we turn to literature as a tool in supplying the information that dying children
may request. This tool is one that will probably not work without personal engagement

and a belief that dying children can understand death.

Chapter 5
CHILDREN '8 LITERATURE: A TOOL FOR APPROPRIATE DISCLOSURE
...literature: it is held to be instrumental to the communication of truths
that could in principle be adequately stated without literature...
-Martha Nussbaum, Love's Knowledge
Literature's Value
It will take more than good literature to help a child understand death and
dying. Literature cannot stand alone; it can only act as a complement to personal
engagement. However, without it we may fail to help children understand death and
dying. My beliefs in the strength of literature as a teaching tool to contribute to one's
ability to grasp abstract concepts are not mine alone. Martha Nussbaum tells us that
stories not only allow- us the-opportunity to "embrace the ordinary,"84 but also to gain
some understanding of those things that are outside of the world we readily experience.
If literature does in fact afford us the opportunity to grasp the ordinary, then
literature would be a positive tool in helping children dying from a terminal disease to
grasp the concept of death. Eulalie Ross notes that as a child learns about life and
death, "the experience of reading a book can contribute to the child's growth, and the
better the book, the more vigorous the growth." 85 On the basis of this, we must come to
some understanding of what makes a book good and what growth we are really trying

to achieve.

 

84Nussbaum, Martha. Poetic Justice: The Literary Imagination and Public Life,
(Boston: Beacon Press, 1995) 9.

85Ross, Eulalie. ”Children's Books Relating to Death: A Discussion in Explaining
Death to Children." In Explaining Death to Children, ed. Earl Grollman (Boston: Becan
Press, 1967) 249.

What Makes a Book Good?

If children really want to know about death and dying, then the best possible
book is one that shows death in at least an honest way. In useful literature death would
be "presented for the child to absorb and ponder over, strengthening as he does so the
inner resources that will help him cope with death when it moves within his
confines."86 However, if children and the adults that care for them are more concerned
about loss of function, the useful literature would discuss loss of function and the
importance of that in relation to how the world now looks to the child. If the literature
is good, then it will give an accurate depiction of death or loss and help the child to
gain some "tolerance for the enigma."87 Good literature, that which is useful, will also

promote growth in the child's understanding of death.

Growing through the use of Literature

We cannot expect that all good literature about death or loss will have a
profound effect on our child's understanding of these concepts, but we can expect that
some good literature will have a positive effect on some children. This effect will be in
the form of a complex realization about the world and how they fit into that world.
They can gain much in the way of understanding about how death and loss really
function in the world. Unfortunately, because children have not experienced as much
of the world as some authors of children's literature, we must always be aware of the

possibility that some literature about death and loss is not good literature.

 

86 Ross, Eulalie 271.

87Ross, Eulalie 257.

41

Trouble: Bad Literature

Literature that distorts the world by presenting historical or scientific facts
falsely or misrepresents the importance of suffering or harm, is literature that does
more harm than good. 33 Fantasy literature, that twists the historical and scientific
facts of the world, has a place in aiding the growing imagination of the child. Yet, it
fails the child when we are talking about something as serious and difficult as death
and loss. Those books that give children a false idea about the world and how death
really affects us, on the most personal level, are harmful. Therefore, we must always be

aware of what good literature is and we must help our children to read critically.

The Tools

We must give all our children, especially those dying from a terminal illness,
the skills "to recognize and then match behavior to the moral circumstances at
hand."89 We must recognize that children may not be able to learn about abstract
concepts. and how to react to those concepts when they become reality, if their
discovery of the world is entirely unaided. 90 One such aid is good literature. Although
literature may not be the only tool in the education of our dying children, it is
certainly a tool we cannot overlook. It is a fact that many of us have a hard time
talking to children about death and loss. Recall the story about Angela's parents from
chapter one; here is another part of the story:

She proceeded to tell me how she had been

diagnosed with cancer more than two years ago
and that she knew she would die. Angela was

 

88Nussbaum 75.

89Churchland, Paul. "Neural Representations of the Social World" In Mind and
Morals: Essays on Ethics and Cognitive Science, ed. Larry May, Marilyn Friedman and
Andy Clark (Massachusetts: MIT Press, 1996) 105.

90Churchland 105.

42

heartbroken that her mother and father could
not talk with her about her death. She had tried
to discuss it with her doctor, but he had rebuked

her abruptly for such talk...91

If Angela's parents are not able to talk about death and her doctor rebukes her for the
mere thought of it, then who is going to explain death and loss to her? Angela's case
may be a special one. Maybe I am wrong. Maybe most parents are willing to talk about
death and maybe most doctors and nurses want to have open dialogues with their
patients; still what is the harm in the use of good literature as an aid in a child's
understanding? There doesn't seem to be any harm. Surely some children will benefit
from the use of good literature and none will be harmed. Some researchers say that a
child conceives of death based on their age, other researchers say that this conception
comes from maturity. Might it also come from what a child is taught? 92

I turn next to a look at current children's literature. The books listed and talked
about here are examples of good literature, but each of us must look at all books before
we give them to any children and only use those that are appropriate for a particular

child.

Examples of Good Literature

For the children in the age group to which this thesis is targeted, there are few
books that really get at the heart of death and dying. Most literature about death and
loss is written for the survivors. The literature is written for those people who have
experienced the death of others, but are not about to die. This is a failure on the part
of authors of children's literature that may have much to do with our fear of childhood

death. Maybe when we begin to realize that death is natural and discover that dying

 

91$eguin 74.

92Sylvia Anthony makes this idea clear in her book, The Discovery of Death in
Childhood and After. This is also an idea held by most of the people that work with
children and use literature as a tool in their work.

43
children really do need to gain some understanding of death so that they can go

peacefully, there will be a multitude of books available for these children. Until then,
we have to look critically at books that are available and make sure that they give
children a realistic look at death and loss.

The books that I believe to be the most useful for children, between the ages of
seven to ten, are books that look at death in a number of ways. Antoine de Saint-
Exupéry, in The Little Prince, 93 gives the child a look at both life and death. He
explains that there is nothing sad about leaving your old shell (body) behind. This
book may confuse some children, but it is a wonderful book for adults to share with
children who may believe that the spirit exists separately from the body. Eleanor
Coerr, in Sadako, 94 gives the child a realistic look at dying from cancer and how death
can be a very peaceful time. Carl Sandburg's poem, "Blue Silver”, gives children a very
beautiful look a child's funeral. The idea of being in a coffin may be extremely
terrifying forchildren, but Sandburg's words,

So they made a long silver box, just long enough to
reach from her head to her feet. And they put on her
a blue silver dress and a blue silver band around her
forehead and blue silver shoes on her feet. There were

soft blue silk and silver sleeves to cover her left arm
and her right arm- the two arms crossed on her breast

like the letter v.95
make the event easier to understand and not so scary. We can also see stories about
death in The Chronicles of Narnia .96 In this seven book series, four children travel

on many adventures and face death in very real ways. These are adventure books, but

 

9P’De Saint-Exupéry, Antonie. The Little Prince, (San Diego: Harcourt Brace &
Company, 1943).

94Coerr, Eleanor. Sadako, (New York: G. P. Putnam's Sons, 1993).

95Sandburg, Carl. ”Blue Silver." In Rootabaga Stories.

96MB, C. S. The Chronicles of Narnia, (New York: Macmillan Publishing Co.,
1970).

44

- in worlds where these children face death there is always a detailed exploration of how
they feel about the loss of life. We can also get some idea about death from Charlotte's
Web and Little Women. However, these books fail to talk about death as it really affects
the child's person. Some of the best literature that is written for children is written by
children and adults who had childhood illness. A child can learn much about body
function loss by reading Lucy Grealy's, Autobiography of A Face. 97 This is a true story
about a young child with a cancer that causes her to have some facial abnormalities. It
is an autobiography, not about death, but about fear and feeling different In this book,
Lucy Grealy had a hard time feeling normal anywhere outside of the hospital. The
hospital became her safe place where she was more like the other children. It is
possible that many other children dying of a terminal illness feel this way. I think it
would be very beneficial for them to know they are not alone. Other books that detail
how children deal with terminal illness are: The Kid's Book about Death and Dying,98
Love, Mark, 99 and many others. 100 These are compilations of stories and letters
written by children facing terminal disease, some of whom are dying. One book that I
believe should be shared with every child is There Is a Rainbow Behind Every Dark
Cloud ,101 which is a picture and word book that allows children to see other children

living with terminal illness. In this book, children living with and dying from

 

97Grealy, Lucy. Autobiography of a Face, (Boston: Houghton Mifflin Company,
1994).

98Rofes, Eric. The Kids' Book about Death and Dying, (Boston: Little, Brown
Publishers, 1985).

998civani, Mark. Love, Mark, (Syracuse: HOpe for the Bereaved, 1980).

100For a very comprehensive look at the currently available literature on death
and dying look at: Grollman, Earl. Talking About Death: A Dialogue between Parent and
Child, (Boston: Beacon Press, 1990).

101Center for Attitudinal Healing, There Is a Rainbow Behind Every Dark Cloud,
(California: Celestial Arts, 1979).

4S

terminal illness detail their feelings about terminal illness in such a way that one
cannot help being touched by their deep insight and understanding. Finally, for those
children who may need or want more advanced literature Shira: A Legacy of
Courage102 is a great biography of a child who comes to terms with illness and dying.
However, good literature can only be good for children if it is presented by someone
who is willing to invest some time with children and provide for them healthy
communication about death and loss.

Additionally, written words are not the not the only source of dialogue about
death and dying. For instance, there are some great short films that do a wonderful job
of introducing children to death and to other children dying from terminal illness. For
example, Nine-Year-Olds Talk About Death, a film that shows healthy fourth-graders
talking about death, introduces this concept in a light that is easily understood by all
children. There are also some films that discuss specific aspects of death, such as
funerals, cremation and burial, that might be helpful in a child's understanding of the
more concrete aspects of the dying process. However, neither literature nor film will
be successful as a learning tool without healthy communication and interaction

between the child and the caregivers or parents supplying these tools.

 

102Grollman, Sharon. Shira: A Legacy of Courage, (New York: Doubleday, 1988)-

CONCLUSION

In this thesis the focus has been on the seven to ten year old child who is dying
from a terminal illness. We have looked at some of the philosophies held by those
people that choose to disclose the truth, seen the value in the an open relationship,
looked at what information dying children are cognitively able to process and grasp,
and finally explored a tool that may help children grasp the concept of death and see
how it fits into their world. I have stated how dying children might need an open
relationship with their practitioners so that they feel comfortable asking questions and
receiving honest answers. And I have shown a need for each child to have some
control over his or own body and death. It might be said that the reality of what I want
for children, that they be supplied with the information they ask for, may rob them of
hope. I believe that true hope only has one source. That source is knowing that you
will receive the truth when you ask to hear it. I think that most people, even children,
can and do deal with the reality of death. Maybe we, as caregivers, do not want to deal
with death and can hardly handle it when a child dies, but I would argue that children
tend to not ask for more than they really want to know.

I have argued that the dying child, in the last stages of illness, knows a great
deal about medicine, loss and death. We hear it time and time again: children learn
what they live. A dying child lives in a world where death is near. That child is bound
to learn about death. Hopefully, we can all be able to deal with death enough that these
children do not have to die alone. Yes, the child still dies and those of us left will mourn
that loss, no matter what the child understands when he or she dies. But can we really

allow the dying child, who knows they are dying, to live the end of their life alone?

Additionally, I would like to propose some changes in the ways in which we

educate or children and the practitioners that care for them. Yet, I know that

47
bringing about large scale educational change may take a lifetime. We might consider

policy of death

education in schools, for all children. That way if they are ever faced with a terminal
illness, they would know a little about being ill and what death is like. Certainly, just
knowing something does not take away the impact of it actually happening, but it may
soften the blow. I also propose that adult caregivers are exposed to better training
about death, especially as it concerns children. Medical care is taught in such a way
that cure is more important than care and death is always avoided. We must make room
in education for death. Medicine is not a perfect enterprise; therefore patients will die.
We must be prepared for that, so that we can help the patient in their last stages of life.
We must also make room for open relationships in the medical setting. It certainly will
take more time to establish a relationship than it takes to "dump" information. We must
take that time. Our children are worth it. Iantoswrites, " most children in the world
who die don't get dialysis, TPIV, or the truth. Might not two out of three be
enough?"103 I say no, two out of these three will never be enough, not if we can do all
three and we can.

On a final note, I am pleased to add that things are starting to change in this
area. We are starting to talk about children and death. We are starting to realize that
children and their beliefs and ideas are important. Recently, OPRR104 , a federal
agency to which most federally funded research most answer, has adopted a policy
requiring the use of children in all research that involves human subjects, unless
conditions are met that show why children must be excluded from the research. There

has also been much discussions about dying children and their rights to make decisions

 

lo3Iantos 91.

lo“OPRR- Office of Protection from Research Risk

48

about their own health care on nationally recognized television programming. 105
These are positive steps in treating children as important participants in decision

making. May we continue to take such positive steps.

 

105One story line on television's ER dealt with this issue as it pertained to a child
with cancer deciding to have an experimental treatment.

BIBLIOGRAPHY

BIBLIOGRAPHY

American Medical Association, Code of Medical Ethics. 8.08 Informed Consent, 1997.

Anthony, Sylvia. The Discovery of Death in Childhood and After. New York: Harcourt
Brace, 1940.

Bauer, David. " What of the Dying Child?” In Death in the Life of Children, ed. Kaoru
Yamamoto. Arizona: Kappa Delta Pi, 1978.

Beauchamp, Tom and Robert Veatch. Ethical Issues in Death and Dying. 2nd ed. New
Jersey: Prentice Hall, 1996.

Bluebond-Langer, Myra. The Private Worlds of Dying Children. New Jersey:
Princeton University Press, 1978.

Bluebond-Langer, Myra. "Awareness and Communication In Terminally Ill
Children: Pattern, Process, and Pretense." Diss. University of Illinois, 1975.

Bok, Sissela. Lying: Moral; Choice in Public and Private Life. New York: Panetheon
Books, 1978.

Buckingham, Robert. A Special Kind of Love: Care of the Dying Child. New York:
Continuum Publishing Co., 1983.

Burbach, Daniel J. and Lizette Peterson. ”Children's Concepts of Physical Illness: A
Review and Critique of the Cognitive Development Literature." Health
Psychology 1986, 5(3): 307-325.

Cabot, Richard. ”The Use of Truth and Falsehood in Medicine: An Experimental Study.”
American Medicine 5(1903): 34449.

Center for Attitudinal Healing. There is a Rainbow Behind Every Dark Cloud. California:
Celestial Arts, 1979.

"Children and Ethical Theory.” Encyclopedia of Ethics. 1992ed.

Churchland, Paul. ”Neural Representations of the Social World” In Mind and Morals:
Essays on Ethics and Cognitive Science, ed. Larry May, Marilyn Friedman and
Andy Clark. Massachusetts: MIT Press, 1996.

Coerr, Eleanor. Sadako. New York: G. P. Putnam's Sons, 1993.

50

Coles, Robert. The Moral Intelligence of Children. New York: Random House, 1997.

De Saint-Exupéry, Antonie. The Little Prince. San Diego: Harcourt Brace 8:
Company, 1943.

Doka, Kenneth. "The Cruel Paradox: Children Who Are living with Life- Threatening
Illnesses." In Handbook of Childhood Death and Bereavement, ed. Charles Corr
and Donna Corr. New York: Springer Publishing Co., 1996.

Drane, James F. Becoming a Good Doctor: The Place of Virtue and Character in Medical
Ethics. Kansas City: Sheed and Ward, 1988.

Easson, William. The Dying Child: The Management of the Child or Adolescent Who is
Dying. Illinois: Charles C. Thomas Publishers, 1970.

Encyclopedia of Ethics, 1992 ed.

Fry. " Images of Death in Children.” In Death in the Life of Children, ed. Kaoru
Yamamoto. Arizona: Kappa Delta Pi, 1978.

Gareth, Matthews. "Children's Concepts of Illness and Death.” In Children and Health
Care: Moral and Social Issues, ed. Loretta Kopelman and John C. Moskop. Boston:
Kluwer Academic Publishers, 1989.

Grealy, Lucy. Autobiography of a Face. Boston: Houghton Mifflin Company, 1994.

Grissco, Thomas and Linda Vierling. ”Minors' Consent to Treatment: A
Developmental Perspective." Professional Psychology 9 (August 1978):

412-27.
Grollman, Sharon. Shira: A Legacy of Courage. New York: Doubleday,1988.
Goldman, Ann. Care of the Dying Child. Oxford: Oxford University Press, 1994.

Gordon, Audrey K. and Dennis Klass. They Need to Know: How to Teach Children about
Death. New Jersey: Prentice Hall Inc., 1979.

Gordon, Bianca. "An Interdisciplinary Approach to the Dying Child and His
Family” In Care of the Child Facing Death. Lindy Burton, ed. London:
and Kegan Paul Ltd., 1974.

Grollman, Earl. Talking About Death: A Dialogue between Parent and Child. Boston:
Beacon Press, 1990.

Jackson, Jennifer. "Telling the Truth." Journal of Medical Ethics 17(1991): 5-9.

Judd, Dorothy. Give Sorrow Words: Working with a Dying Child. London: Free
Association Books, 1989.

Kastenbaum, Robert. " The Child's Understanding of Death: How Does it Develop?" In
Explaining Death to Children, ed. Earl Grollman. Boston: Becan Press, 1967.

SI

Lantos, John. "Should we Always Tell Children the Truth?" In Perspectives in
Biology and Medicine (Autumn 1996), ed. Richard Iandu, et al. Illinois:
University of Chicago Press, 1996.

Iewis, C. S. The Chronicles of Narnia. New York: Macmillen Publishing Co., 1970.

Leve, Robert. Childhood: The Study of Development New York: Random House, 1980.

Lipkin, Mack. "On Lying to Patients." Newsweek (June 4, 1979): 13.

Marten, George and Alvin Mauer. " Psychosocial Interactions of the Dying Child, the
Parents, and Health-Care Professionals." In Children and Death: Perspectives
from Birth through Adolescence, ed. John Schowaiter, et al. New York: Praeger
Publishers, 1987.

Meyer, Bernard. "Truth and the Physician." In Ethical Issues in Medicine: The Role of
the Physician in Today's Society, ed. E. Fuller Torrey. New York: Little Brown
and Company, 1968.

Mohowald, Mary. Women and Children in Health Care: An Unequal Majority. Oxford:
Oxford University Press, 1993.

Mulholland, Clare. 1973.

Novack, Dennis, Robin Plumer, Raymond Smith, Herbert Ochitill, Gary Marrow and
John Bennett. " Changes in Physicians' Attitudes Toward Telling the Cancer
Patient." Journal of the AMA 241 (March 1979): 897-900.

Nussbaum, Martha. Poetic Justice: The Literary Imagination and Public Life. Boston:
Beacon Press, 1995.

Pekkanen, John. MD..: Doctor's talk about themselves. New York: Dell Publishing, 1988.

Pellegrino, Edmund D. and David C. Thomasman. The Virtues in Medical Practice. New
York: Oxford University Press, 1993.

Perrin, Ellen C. and Susan Gerrity. " There's a Demon in Your Belly: Children's
Understanding of Illness." Pediatrics 67 (November 1981): 841-849.

Rofes, Eric. The Kids' Book about Death and Dying. Boston: little, Brown Publishers,
1985.

Ross, Eulalie. "Children's Books Relating to Death: A Discussion in Explaining Death to
Children." In Explaining Death to Children, ed. Earl Grollman. Boston: Becan
Press, 1967.

Ross, W. D. The Right and the Good. Oxford: Oxford University Press, 1930.

Rothenberg, Michael. "Problems posed for staff who care for the child." In Care of the
Child Facing Death. Iindy Burton, ed. London: Routledge and Kegan Paul Ltd.,
1974.

Sandburg, Carl. "Blue Silver." In Rootabaga Stories.

52

Samp, Robert and Anthony R. Currei. "A Questionnaire Survey on Public Cancer
Education Obtained from Cancer Patients and their Families." Cancer 10 (1957):
382-384.

Scivani, Mark. Love, Mark. Syracuse: Hope for the Bereaved, 1980.

Seguin, Marilynne and Cheryl Smith. A Gentle Death. Canada: Key Porter Books, Ltd.,
1994.

Sidgwick, Henry. "The Classification of Duties of Veracity." Methods of Ethics
(1907):312.

Speece, Mark and Sandor Brent. "The Development of Children's Understanding of
Death." In Handbook of Childhood Death and Bereavement, ed. Charles Corr and
Donna Corr. New York: Springer Publishing Co., 1996.

Speece, Mark and Sandor Brent. "Irreversibility, Nonfunctionality and Universality:
Children's Understanding of Three Components of a Death Concept." In
Children and Death: Perspectives from Birth through Adolescence, ed. John
Schowaiter, et al. New York: Praeger Publishers, 1987.

Weir, Robert and Charles Peters. "Affirming the Decisions Adolescents Make about Life
and Death." Hastings Center Report 27 (November 1997): 29—40.

Worthington, Hooker. Physician and Patient: Or, a Practical View of the Mutual Duties,
Relations and Interests of the Medical Profession and Community. New York:
Baker and Schribbner, 1849.

Van Eys, Jan. " The Definition of Dying and the Personhood of the Child." In
Children and Death: Perspectives from Birth through Adolescence, ed. John
Schowaiter, et al. New York: Praeger Publishers, 1987.

Yoos, Lori. "Chronic Childhood Illness: Developmental Issues." Pediatric Nursing 13
(Jam-Feb.) 25-28.

MICHIGAN STRTE UNIV. LIBRQRIES
llIIWNHIIHIIWIUIHWI”INNIIIINIWIWI
31293016880480