1alking Cancer

Bv

Lisa Sparks, Ph.D.
Proíessor and Presidential Research lellow in lealth and Risk
(ommunication. (hapman Uni·ersitv. Orange. (A 92866


Melinda M. Villagran, Ph.D.
Associate Proíessor. Department oí (ommunication
George Mason Uni·ersitv. lairíax. VA. 22030
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(opvright © 2009 bv Lisa Sparks & Melinda Villagran.


lirst published 2009 bv Lditorial Aresta S(
Sant Joan. 3
1¯141- Bellcaire d`Lmporda
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All rights reser·ed. No part oí this publication mav be reproduced or distri-
buted in anv íorm or bv anv means. including. but not limited to. the process
oí scanning and digitization. or stored in a database or retrie·al svstem. with-
out the prior written permission oí the Publisher.


1o order on line: www.editorialaresta.com


ISBN: 9¯8-84-93594893

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\e dedicate )at/ivg Cavcer to our íamilies
and íriends past. present. and íuture in-
cluding but not limited to:
John O.. Marcia. Daniele. Llena. Arianna.
Athena. Jav. Linda. Paul. Pevton. Katie.
Lmma. & Jack.
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Table of Contents

Prologue 11

(hapter One:
Understanding (ancer (ommunication
Science: lealth Literacv 19

(hapter 1wo: (ulture and (ancer (are 3¯

(hapter 1hree: (aregi·ing and (ommunication 51

(hapter lour: Social Identitv and (ancer (are 63

(hapter li·e: Pro·ider-Patient Interaction ¯5

(hapter Six: (ommunication in
(ancer (are Organizations 93

(hapter Se·en: New (ommunication 1echnologies
and Mediated Approaches to
(ancer (are 105

(hapter Light: (ancer (ommunication Messages
Across the Liíespan 11¯

Lpilogue 141

Reíerences 145
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COMMUNICA1ING WI1H AND ABOU1 SOCIL1Y`
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In the United State at least. the academic discipline oí (ommu-
nication has historicallv had a poor reputation. with manv un-
ílattering stereotvpes attached to it. In vears past. it was iníam-
ous íor the degree an athlete might tvpicallv take ií he or she was
more sports-oriented than intellectuallv-inclined. All that has
now changed. and íor the better! In manv colleges around the
world. (ommunication is regarded as one oí its most producti·e
and ·ibrant entities. Not onlv do students and the lav public
ha·e more knowledge about what constitutes its subject matter.
thev understand it to be a rigorous studv oí the wavs in which
we con·ev messages in íace-to-íace interaction. across old and
new medias. in the workplace. etc. Manv Deans and (hancel-
lors ha·e emerged írom (ommunication departments. a signiíi-
cant mo·e that has promoted this kind oí understanding and
newlv-íound prestige. Indeed. it is a ·erv popular discipline íor
e·en the brightest students to now take. vet one that oíten has
the most stringent standards íor a student to major in it.
All this means that to graduate with a degree in (om-
munication allows vou to obtain an arrav oí jobs quicker than
with most other degrees. Lmplovers oíten lo·e students with
this background and allied sensiti·ities. 1his is due. in large
part. to the íact that manv oí our societv`s ills ha·e. rightlv or
wronglv. been blamed on a lack oí communication. or miscom-
munications. between indi·iduals and or rele·ant parties. be thev
politicians. law eníorcement. or social groups relating to gender.
sexual orientation. nationalitv. ethnicitv. age. etc.
Our aim - in this quite unique international series oí
books - is to pro·ide readers with an understanding oí what the
newlv-emerging discipline oí (ommunication has to oííer socie-
tv - and íor each oí us indi·iduallv in our personal li·es. 1he
books are written bv communication experts who are them-
sel·es on the cutting edge oí research and theorv and who are
íorging new ad·ances in their respecti·e íields. \hene·er poss-
ible. the authors reíer to Spanish and Latin American research.
issues. problems. and policies. 1hese short. reader-íriendlv ·o-
lumes are not cluttered up bv distracting academic citations and
none oí these appear in the text at all: classic and recent sources
oí íurther reading are pro·ided at the end oí the book. In addi-
tion. these books are not thickened bv dense and complex theo-
ries. when introduced íor the necessitv oí understanding the
complexitv oí social issues thev are introduced. again. in a di-
gestible íormat.
1he Series. then. is an attempt to open up a dialogue
about knowledge gaps in an arrav oí social arenas - with the
con·iction that íurthering the public`s understanding about
communication issues will íacilitate greater tolerance and eííec-
ti·e. peaceíul social acti·ism. \e aim to pro·ide a íeast oí
compelling topics írom bullving to sports through to prejudice
through to older liíe - as can be seen at the end oí this Preíace.
1he inaugural ·olume here entitled. ´Communicating about
cancer¨ is written bv Lisa Sparks and Melinda Villagran. \hile
a somber topic at some le·els with which to open up a new Se-
ries. it is replete with hope and good ad·ice about a widespread
condition that can upset ií not ruin some people`s li·es and íam-
ilies. In this engaging and inno·ati·e book. we learn how cov·
vvvicatiov practices are íundamental to how we can more eííec-
ti·elv íirst learn about the disease that mav ha·e ·ictimized us or
our close ones through to how we can manage its manv diííer-
ent and challenging phases. \hile oncological concerns ha·e
in·ariablv been considered írom onlv medical perspecti·es. we
see herein how so important being communicated to and being
able to communicate about cancer can aííect well-being and
e·en sur·i·al. 1his book. thereíore. is an important springboard
íor the Series in that it is ·ital reading íor all oí us who. ine·ita-
blv. ha·e been. are being. or will be touched bv this per·asi·e
bodilv aííliction.


loward Giles t|virer.ity ot Catitorvia. ´avta ßarbara)
General Lditor

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11




Prologue


Bv the time vou ha·e picked up this book. vou ha·e probablv
alreadv been talking with health care pro·iders. íamilv members.
and íriends about vour experiences with cancer. )at/ivg Cavcer is
written íor anvone who has been impacted bv cancer in some
wav. \ou probablv alreadv ha·e something to sav about com-
munication processes in healthcare en·ironments. and vou
probablv alreadv know that some health iníormation makes
sense. but also íind that vou also come across conílicting health
iníormation that can oíten be quite coníusing to sort out. As
vou watch the dailv news vou ha·e probablv noticed a íew ex-
amples oí conílicting health iníormation. One report will sav
that ` íood is bad vou íor vou and should be a·oided. then
another report will sav that ` íood is actuallv good íor vou. so
vou should eat it regularlv. In recent vears we ha·e been told
about the dangers and health beneíits oí íoods such as red wine.
íish. and e·en chocolate. lealth iníormation can be ·erv con-
íusing!
Do vou ha·e a tendencv to ask a lot oí questions· Do
vou íind vourselí gathering as much iníormation as possible
when vou experience something new. or do vou íind vourselí
asking questions in a situation in which vou don`t íullv under-
stand what is happening· \e hope so. because ií vou answered
ves` to these questions---)at/ivg Cavcer is the right book íor
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vou. 1his mav be a ·erv diííicult moment in vour liíe or in the
liíe oí someone vou care a lot about. and )at/ivg Cavcer mav
oííer answers to some oí vou questions about communicating
with other during this time.
\e wrote this book in honor oí vou and vour lo·ed
ones who are dealing with the cancer experience in some wav. in
large part because we not onlv ha·e been studving and research-
ing this topic area íor more than 25 vears combined. but we also
ha·e been there` as caregi·ers íor our íamilv members. \hile
we ha·e made our own unique contributions to the literature
pro·ided and ha·e drawn upon our expertise in our writing oí
)at/ivg Cavcer. we also ha·e drawn upon the expertise oí nu-
merous scholars with whom we ha·e collaborated. írom whom
we ha·e learned about this topic based on their research. \e
want to take this opportunitv to recognize all oí the cancer
communication scientists who ha·e made this work richer and
more useíul íor our readers. 1he goal oí )at/ivg Cavcer is to lead
the reader through the maze oí tasks and iníormation that oíten
emerge when an indi·idual and íamilv is dealing with cancer íor
the íirst time or íor those who just want to obtain a deeper
knowledge oí communication processes and how such know-
ledge and understanding can lead to better health outcomes.
1his book oííers a svstematic look at the important role
oí communication concepts in cancer care. )at/ivg Cavcer in·es-
tigates the poweríul role communication plavs in creating shared
meaning and understanding oí cancer-related health iníormation
in an eííort to empower patients. íamilv members. pro·iders and
indi·iduals. communitv members. and organizations connected
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to the healthcare svstem to make the most iníormed health deci-
sions in an eííort to achie·e better health outcomes.
)at/ivg Cavcer helps the reader decide which questions to
ask and when. where to get reliable iníormation. and how or
when to share the diagnosis with others. In leading vou through
the book. we trv to help vou to understand how communication
about cancer can pro·ide a path towards helping vou and vour
lo·ed ones to continue to li·e vour absolute best and healthiest
li·es through the oíten diííicult. complex. and coníusing process
oí li·ing with cancer. \e attempt to shed light on how commu-
nication among patients. pro·iders. íamilv members. and me-
diated sources can enhance the diííicult process oí cancer care
so we can all make the best health decisions and. as such. li·e
our li·es in the best wav possible as we na·igate the oíten un-
known cultural world oí cancer írom pre·ention to detection.
diagnosis. treatment as well as sur·i·orship and end-oí-liíe. As
such. we structure the book bv starting each chapter with real
liíe scenarios vou are likelv to come across during vour cancer
care experience.
(hapter one kicks oíí these ideas bv oííering discussions
oí the increasinglv important topic oí health literacv and how
becoming health literate can lead to better health outcomes. \ou
mav ha·e heard the saving: /vorteage i. porer. In íact. patients
and caregi·ers alike must increase knowledge oí health and can-
cer iníormation in order to make the best and most iníormed
decisions along the cancer journev. 1he goal is to be able to
work with vour health care pro·ider team bv plaving a poweríul
role in the decision-making process.
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(hapter two considers the impact oí cultural iníluences
on cancer care. (ulture creates a context íor communication and
a set oí rules or norms about how we talk about cancer. \e
describe how culture shapes ·alues and belieís about health.
expectations íor ·isits. knowledge. attitudes. organization oí the
health care svstem. and societal and cultural norms about what it
means to ha·e cancer. (ulture permeates e·erv part oí our
world and thereíore also has a tremendous impact on the cancer
care process.
(hapter three outlines issues oí caregi·ing in the cancer
context bv examining communication needs oí patients and
caregi·ers. issues oí hospice and palliati·e care. and communica-
tion issues related to end-oí-liíe decision-making. death. and
dving. \e examine dilemmas oí social support. the relationship
between support and health outcomes. and research on support
groups íor people coping with ·arious tvpes oí health issues in
cancer contexts.
(hapter íour explores how cancer shapes and oíten
changes an indi·idual`s social identitv. \e pro·ide an intriguing
discussion on how a cancer diagnosis changes the wavs bv
which people talk and relate with other people and relationships.
low do patients. íamilv members. and íriends deal with identitv
shiíts írom li·ing a liíe not in·ol·ing cancer. to cancer oíten
becoming a dominant part oí the o·erall identitv.
(hapter íi·e pavs particular attention to health care pro-
·ider-patient interaction. lealth care pro·iders can be a great
source oí reliable iníormation about e·erv stage oí the cancer
care process. leath care pro·iders tend to answer most ques-


tions about the illness itselí. but oíten are not equipped to deal
with patient`s ·aried iníormational. emotional. and psvchological
needs. Because the relationship between health care pro·iders
and cancer patients is quite complex. we de·ote an entire chap-
ter to this expansi·e and important communication en·iron-
ment bv paving particular attention to the role oí íriends. íamilv.
as well as nurses. social workers. phvsician`s assistants. and la-
boratorv technicians and all aspects oí the health care team in
addition to the doctor,.
(hapter six examines eííecti·e communication within
health care organizations with an emphasis on the role oí hos-
pice organizations in terms oí how such communication can
make the experience oí cancer care more positi·e íor patients
and their íamilies. lealth organizations that are comprised oí
members who eííecti·elv balance the tasks and relationships in
the group tend to ha·e members who are more satisíied. more
team-oriented. and ultimatelv more successíul at maximizing the
potential oí health care deli·erv.
(hapter se·en íocuses on the role oí new technologies
and media in the cancer en·ironment. lealthcare consumers oí
all ages use ·arious technologies to obtain health iníormation
and communicate with pro·iders. Similarlv. íriends and íamilv
share health concerns and talk with each other about health is-
sues e·ervdav. (omputers and the Internet ha·e opened the wav
íor indi·iduals to create and maintain social networks bv linking
patients. pro·iders. íamilv members to health organizations. and
increasing knowledge about cancer care. In addition. the chapter
unco·ers the diííerences inherent between computer-mediated


communication and interpersonal communication as well as
how communication can be greatlv impacted bv the channel
through which it occurs.
(hapter eight pro·ides an extensi·e re·iew oí how
health risk messages impact our health outcomes and can do so
in diííerent wavs across the liíespan. In particular. the chapter
looks at the wavs in which we talk and learn about cancer within
our íamilies. írom our íriends. as well as írom health care pro-
·iders and how we then translate those ·arious health risk mes-
sages into making health decisions in our own li·es.
1he good news is that cancer is not what it was 20 vears
ago. which has resulted in record numbers oí cavcer .vrriror. than
e·er beíore in historv! As a result oí picking up )at/ivg Cavcer.
vou are more iníormed and taking action in the dailv liíe choices
in íront oí vou and as such. can make better health choices and
decisions along vour health care journev. 1he experience oí can-
cer is oíten a balance between hope and despair. and our goal is
to help readers íeel a little more hopeíul about their poweríul
role in the cancer care process. )at/ivg cavcer pro·ides a compre-
hensi·e. rigorous. but accessible approach to understanding
cancer and how such communication. iníormation. and subse-
quent iníormed decision-making can produce better health out-
comes. \e said beíore that knowledge is power. but communi-
cation is equallv poweríul. (ommunication can plav a huge role
in cancer pre·ention. and can also plav a signiíicant role in the
health decisions we make beíore. during. and aíter a cancer di-
agnosis. Aíter reading )at/ivg Cavcer. we trulv belie·e that vou
will ha·e another important tool to draw upon as vou encounter


the complex health care en·ironment. \es. vou will hit se·eral
roadblocks along vour cancer journev. but vou will hopeíullv,
be able to deal with the obstacles with more coníidence and
iníormation to help vou through the complexities and diííicul-
ties vou will indeed encounter. \e make health choices ·ia
communication. \e create. maintain. and destrov relationships
·ia communication. \e hope that bv reading )at/ivg Cavcer. vou
will be better equipped to deal with the ·arious health messages
and relationships in vour liíe. therebv producing better health
outcomes íor vou. vour íamilv. and íriends. \e hope that in
some small wav. bv using the communication tools acquired bv
reading )at/ivg Cavcer vour own cancer care experiences with the
health care svstem won`t be as diííicult as some oí the ones we
describe in the íollowing pages. íe.tiva íevte!

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19




Chapter One


Understanding Cancer Communication
Science: Health Literacy


íor cav it be tbat a per.ov rbo too/. ava teet. a. gooa a. í ao
ba. cavcer. Ye.teraay í ra. a vorvat. beattby ²1·year ota vav.
ava toaay í bare cavcer. í av .carea. avgry. covtv.ea ava ae·
pre..ea. í aov`t /vor rbat to ao ve·t. or rbere to tvrv.

1his statement reílects the ílood oí emotion experienced when a
person íinds out that he or she has cancer. Patients diagnosed
with cancer oíten íeel helpless and coníused about how to na·i-
gate their cancer care process. \here can I get the right iníor-
mation about cancer· low do I tell mv lo·ed ones about this·
(ommunication about cancer in·ol·es deciding which
questions to ask. where to get reliable iníormation. and how or
when to share the diagnosis with others. (ommunication scho-
lars are interested in íinding wavs to íoster emotional support
and open communication to help cancer patients li·e their best
and healthiest li·es. 1hus. the purpose oí this book is to shed
light on how communication among patients. pro·iders. íamilv
members. and mediated sources can enhance the diííicult pro-


cess oí cancer care so we can all make the best health decisions
and. as such. li·e our li·es in the best wav possible as we na·i-
gate the oíten uncertain. complex. and coníusing new cultural
world oí li·ing with cancer.
Our íramework íor understanding talking about cancer
in large part is .ociat beattb íor it is ·ia our relationships that we
most oíten seek and obtain health iníormation. make decisions.
etc. all oí which ultimatelv impact our health in dramatic wavs.
As such. we would like to put íorth what we call ´ociat íeattb
)beory as a íramework íor understanding how our interactions
impact our health. 1he central premise oí ´ociat íeattb )beory is
that our con·ersations and historv oí interactions create. main-
tain. and´or destrov our relationships in positi·e and negati·e
wavs that ultimatelv impact our health. 1hus. covvvvicatiov iv·
pact. ovr beattb orer tive. Lach dav. we can make conscious choic-
es about the people with whom we interact. Some interactions
will be positi·e and some will be negati·e. 1he goal is to con-
sciouslv choose to engage in vore positi·e interactions than neg-
ati·e interactions. thereíore creating vore positi·e and healthv
relationships in our li·es and thus be better equipped to make
better health decisions and successíullv age. At the same time.
we must consciouslv let go oí as manv negati·e interactions as
possible. 1hus. ií vou ha·e a negati·e interaction during the dav
vou better trv to surround vourselí at the ·erv least with an equal
number oí positi·e healthv interactions beíore the end oí the
dav. (onsciouslv do this each and e·erv dav and vou will slowlv
rid vourselí oí the relationships that are contributing negati·elv
to vour liíe and subsequentlv vour health. which will likelv result


in li·ing a healthier liíe so vou can li·e vour best liíe possible. Ií
we are able to be pre.evt in all oí our interactions. we can begin
choosing more positi·e relationships. organizations. etc. luture
research is needed to íullv understand the íunction oí ´ociat
íeattb )beory more preciselv in terms oí how our health is poten-
tiallv impacted in positi·e and negati·e wavs due to our interac-
tion en·ironment o·er time. \e are suggesting that vou begin to
pav more attention to the negati·e interactions in vour liíe and
oííset as manv oí those as possible with more positi·e interac-
tions and relationships to achie·e a more satisíactorv and. argu-
ablv. a healthier wav oí liíe. \e also suggest that vou pav atten-
tion to the positi·e interaction en·ironment in vour liíe and
spend more time nurturing those relationships that are contri-
buting to vour liíe in positi·e and healthv wavs.
1he connection between communication and social rela-
tionships and health and cancer mav not be something vou think
about ·erv oíten ií at all,. lowe·er. the term covvvvicatiov is
usuallv related to things like our social and interpersonal rela-
tionships. the Internet. and radio and tele·ision. In order to be-
come a well-educated consumer oí health iníormation means
becoming vore titerate about health and cancer and gaining a
deeper understanding how our social interactions and relation-
ships can plav a crucial role in impacting our health in a ·arietv
oí wavs.
íeattb titeracy is an emerging and extremelv important
area oí health communication around the world. and is rapidlv
becoming an important health communication issue recei·ing
national and international attention o·er the last íew vears. Al-


though patients in Luropean countries with nationalized health-
care svstems mav ha·e more access to care than residents in
other parts oí the world. there are still people who struggle to
read. understand. and use iníormation essential to pre·enting a
trip to the doctor in the íirst place! Some health care communi-
cation researchers argue that in order to impro·e the usabilitv oí
health iníormation we must íirst see impro·ement in the usabili-
tv oí health ser·ices. then increase knowledge and relationships
in an eííort to impro·e decision-making. and íinallv ad·ocate íor
health literacv outcomes within organizations. lealth literacv
has emerged as an important issue in recent vears. and it has
been íound to aííect the health outcomes oí indi·iduals.
lealth literacv is most oíten broken down to the íollow-
ing íour elements:
1, cvttvrat ava covceptvat /vorteage.
2, ti.tevivg ava .pea/ivg torat titeracy).
3, rritivg ava reaaivg tprivt titeracy). and
4, vvveracy t/vorteage ot .tati.tic. ava otber vvveric
aata v.ea iv beattbcare).
Manv phvsicians continue to take a routine approach to
medicine and patients rather than using an approach tailored to
each indi·idual case and patient needs. Research indicates that
phvsicians who pav attention to aspects oí health literacv tend to
be better in terms oí communicating with patients.


1he (enter íor Plain Language íocuses on health literacv
bv posing the íollowing questions: Do we li·e in a societv where
people can: 1, íind what thev need: 2, understand what thev
íind: and 3, use it to accomplish their goals· Ií vou were to ask
vourselí these same questions. would vou consider vourselí to
be proíicient and comíortable in na·igating the health care en·i-
ronment· 1his chapter hopes to accomplish the íollowing goals:
1, to help vou to understand the emerging and important re-
search area oí cancer communication science and cancer litera-
cv: and 2, how vou can increase vour cancer awareness and un-
derstanding. 1hus. vou will increase vour health and cancer lite-
racv so vou can make more iníormed health decisions and
achie·e better health outcomes.
lealth literacv is deíined as the degree to which indi·id-
uals ha·e the capacitv to obtain. process. and understand basic
health iníormation and ser·ices needed to make appropriate
health decisions.

Onlv 12 percent oí adults ha·e Proíicient health literacv. according
to the National Assessment oí Adult Literacv. In other words. near-
lv 9 out oí 10 adults mav lack the skills needed to manage their
health and pre·ent disease. lourteen percent oí adults 30 million
people, ha·e Below Basic health literacv. 1hese adults were more
likelv to report their health as poor 42 percent, and are more likelv
to lack health insurance 28 percent, than adults with Proíicient
health literacv. Low literacv has been linked to poor health out-
comes such as higher rates oí hospitalization and less írequent use
oí pre·enti·e ser·ices p. 2.3, see lact Sheet: lealth Literacv and


lealth Outcomes,
http:´´www.health.go·´communication´literacv´quickguide´Ouic
kguide.pdí.,.

lealth literacv can greatlv impact patient saíetv and
health outcomes. 1he Joint (ommission on Accreditation oí
lealthcare Organizations 2002, claims that root cause analvsis
íinds more than 80 percent oí medical errors are due to com-
munication breakdowns.` lealth literacv tvpicallv deals with an
indi·idual's abilitv to na·igate the health svstem. to obtain clini-
cal iníormation. and to obtain iníormation about pre·enti·e
acti·ities. although in recent vears the deíinition has been broa-
dened to include institutions. svstems. and communities. lealth
literacv should be deíined not just on the indi·idual le·el as in a
person`s knowledge. but also should include the greater com-
munitv`s abilitv to pro·ide spaces íor people to participate in
healthv liíestvles and to pro·ide opportunities íor creating
shared meaning and understanding in terms oí communication
among all communitv members.
In other words. it is not just mv responsibilitv to cook
healthv meals and go to the gvm or boot camp. It is also the
communitv`s responsibilitv to create attracti·e open spaces with
trouble-íree access and admission to biking. hiking. and running
trails as well as to increase access to healthv stores. lurther. the
communitv can and should pro·ide places where people can
more easilv get checkups íor their own health needs. lor in-
stance. íor cancer protection and pre·ention beha·iors. com-
munitv leaders can teach new parents about the importance oí
putting sunscreen on their voung toddlers e·erv dav and as a


result show their growing children how to put sunscreen on
e·ervdav. Such a simple pre·ention beha·ior can quite likelv
become an embedded health beha·ior íor those íortunate child-
ren. (ommunitv leaders can oííer healthv shopping and cooking
e·ents and´or a model íor implementing a healthv li·ing plan
within each neighborhood or communitv association.
lealth literacv is increasinglv recognized an important
issue

aííecting communication across the continuum oí health-
care.

Recent research shows that upon recei·ing diagnoses oí
diseases. such as cancer and Alzheimer`s disease. patients and
their íamilies oíten íace decisions íor which thev are usuallv
unprepared. Surprisinglv. healthcare pro·iders and the medical
establishment are oíten equallv unprepared to help patients and
their íamilies make the best and most iníormed decisions.
lealth communication scholars increasinglv report that treat-
ment choices are oíten made in an en·ironment oí uncertaintv.
ambiguitv. misiníormation. high emotion. anguish. and the out-
come ends up being less ía·orable than recent medical ad·ances
could allow.
Patients must be sa··v as thev gather credible health in-
íormation írom a ·arietv oí pro·iders. A recent studv in Spain
linked lack oí credible cancer iníormation to socio-economic sta-
tus. lowe·er. regardless oí income or education. health literacv
can be quite coníusing and daunting. Patients must come to
healthcare situations prepared with as much credible iníormation
as possible. 1he health care svstem can be a maze oí misiníorma-
tion.


lor example. printed consumer heath care materials deli·ered to
patients in multiple countries mav ha·e inaccurate or improper
word translations. \hile discussing the diííiculties oí creating ac-
curate health iníormation. a drug companv executi·e recentlv said.
\e trv to create materials that can be used in se·eral countries.
but there is no generic` Spanish that e·ervbodv can understand.
\hen vou write something in Roval Academv Spanish. vou end
up with something totallv incomprehensible to most people in
Mexico or Latin America. In Spain a computer is an oraevaaor. 1o
the rest oí the Spanish speaking world. a computer is a covpvtaaora
and an oraevaaor is a ·erv mean person that gi·es orders to vou. So.
ií vou tell a Latin American that thev must use their oraevaaor to
íind iníormation. thev will think that thev must get help írom their
·erv mean assistant principal. A non-proíit organization is an or-
ganization .iv avivo ae tvcro in Spain. .vivo means spirit in Spanish
and in some cultures vou must be careíul to not in·oke spirits.
Moreo·er. most don't know what .iv avivo ae tvcro means. Oííering
health iníormation can be ·erv diííicult unless one knows how to
translate heath iníormation. One needs to become íamiliar with
the linguistic and cultural choices oí the communitv. Most drug
companies and worldwide health care companies do a good oí
making sure iníormation is accurate. but as a consumer it is im-
portant to be careíul when translating iníormation írom Internet
chat rooms or other iníormal channels.
In other words. it is vour job as a health consumer to arm
vourselí with as much iníormation as possible. and to be a sa··v
consumer oí that iníormation. L·erv source is not a good source.
(onsider who wrote the iníormation. Gathering iníormation is the


íirst step. but analvzing the iníormation to consider inconsisten-
cies is the next step. Do not take e·erv piece oí iníormation at
íace ·alue. 1hat is certainlv not to sav vou should doubt all iníor-
mation. but rather. just be aware that vou ha·e choices about the
iníormation vou choose to ·iew as credible íor vourselí and vour
situation.
\hen reading health iníormation or talking to health au-
thorities. it is important to understand that statistics about vour
particular health issue mav not necessarilv applv to vour particular
case. Lach indi·idual patient has diííerent characteristics that mav
result in a stronger health outcome e.g. o·erall phvsical health
status. genetic predispositions. tolerance íor certain medications
and treatments,. lowe·er. it is not surprising that people who
simplv look at the numbers associated with a certain disease oíten
lose hope. gi·e up. and e·en die without anv real knowledge in
terms oí how thev would ha·e responded to certain treatment
options which could ha·e resulted in gaining se·eral vears or
more. Because health literacv is such a complex issue íor patients.
a ·arietv oí patient and caregi·er ad·ocacv groups ha·e been
íormed in recent vears in an eííort to raise awareness about par-
ticular diseases.
Perhaps vou ha·e a íriend or íamilv member who has
just been diagnosed with cancer. \ou íind that as an educated
person vou are able to gather ·arious kinds oí health iníorma-
tion about cancer bv talking with doctors and other health care
pro·iders as well as through online searches. Still. vou íind that
there is too much general iníormation and it doesn`t applv to
vour situation. \ou process as much iníormation as possible


sorting through the diííerent and sometimes conílicting iníor-
mation írom diííerent pro·iders and ·arious websites. Oíten-
times. vou search íor hours and e·en davs without íinding exact-
lv what vou are looking íor. Some oí the iníormation is diííicult
to understand because it is using quite a bit oí technical language
that vou are not íamiliar with. \ou spend e·en more time trving
to learn the new deíinitions and wavs oí talking about the diag-
nosis. possible treatment options. and directions on what do to
íor one thing or another. \ou are becoming more literate about
vour health and cancer care situation with each passing dav. but
it is still somewhat o·erwhelming and coníusing in terms oí
what to do with all this new iníormation.
\e would argue that health and cancer literacv go
bevond the initial deíinitions related to obtaining. processing.
and understanding basic health iníormation and ser·ices. Ga-
thering and processing such important health iníormation about
cancer is an important íirst step. but acting on this iníormation
in order to make iníormed choices and impro·e one`s health
and beha·iors across the liíe span is most oíten the ultimate
goal. low can we increase the likelihood that we will be able to
íind what we need. understand iníormation. and accomplish
attainable goals in the cancer en·ironment· Oí course. there are
most certainlv manv barriers to taking action that need to be
considered and require íurther research. 1o trulv reach a le·el oí
cancer literacv. health care pro·iders and health care svstems
must create an impro·ed en·ironment with which to work with
patients to create shared meaning that is tailored to each cancer
patient. (ancer literacv is more than being able to obtain and


process iníormation and ser·ices. (ancer literacv is not some-
thing patients ha·e or do not ha·e. and must impro·e. lealth
literacv is. íor example. when a health care pro·ider ensures that
a patient lea·es their oííice able to explain their diagnosis.
treatment protocol and´or set oí issues in their own words.
lealth literacv is when pro·iders oííer multiple messages in
multiple mediums íor the message recei·er aka: patients. íamilv
members. íriends,. lor instance. when a health care pro·ider
must break bad news to the patient s´he can talk about it ·erbal-
lv. while also pro·iding a large íont written´·isual´aural´picture
·ersion oí the discussion íor the patient and his or her caregi·-
ers to take home. 1hen. an interpersonallv based patient na·iga-
tor svstem much like the teacher-student relationship, could be
pro·ided outside oí a pro·ider appointment where a patient can
talk in more detail to clariív their needs and get íurther iníorma-
tion in a ·arietv oí appropriate íormats so patients can ha·e
choices in terms oí preíerred iníormation gathering. understand-
ing. and processing.
A new program in the United States is aimed at helping
hospitals nationwide to determine their patients' communication
needs and to implement speciíic tools to meet those needs. lor
instance. a hospital in New Jersev has set up a ·isual picture
svstem oí health care that is working. 1hev ha·e created mul-
tiple panels oí images that pro·ide patients with an opportunitv
to point to icons showing their speciíic health issue e.g. pain or
breathing problem, as well as the part oí the bodv that íeels
diííerent. Patients can also point to their nati·e language in a list
so an appropriate interpreter can be identiíied and brought in to


aid in the interpretation oí oíten complex health iníormation.
In Spain. íor instance. education and social class are oíten con-
sidered to be major iníluences on health literacv. As such. im-
pro·ements in health and cancer literacv must include these
íactors to plan eííecti·e health communication programs. create
impro·ed health outcomes. decrease costs. and increase patient
satisíaction. Patients with little education might beneíit írom the
use oí a picture svstem or other tools to help simpliív the identi-
íication oí complex health concerns.
!bat aoe. cavcer titeracy veav tor patievt. ava caregirer..
(ancer patients and caregi·ers are o·erwhelmed with
the ·ast amounts oí iníormation thev are exposed to throughout
the oíten lengthv process oí disco·ering thev ha·e cancer to
understanding the speciíic diagnosis. treatment options and the
related outcomes. Literacv means ha·ing a basic understanding
oí a range oí health topics and being able to diííerentiate diííer-
ent tvpes and what that means in terms oí decision-making íor
better health outcomes. Literacv must also include understand-
ing basic numbers. percentages. also known as numeracv skills.
1his can include things like understanding how to measure dos-
es. how to decipher nutrition labels. or how to calculate pre-
miums. co-pavs. deductibles or choosing a health plan. \hat can
a patient or caregi·er do to impro·e their cancer literacv· lirst
oí all. vou can ask vour pro·ider simple but speciíic questions
such as: "(an vou show me anv pictures·" Research supports
the notion oí patient understanding oí health iníormation ·ia
pictures in terms oí increasing both understanding and recall oí
health iníormation. Once vour health care pro·ider shows vou


pictures vou can íurther probe with additional questions to ob-
tain more speciíic important iníormation. lor instance. "In this
brochure vou'·e gi·en me. could vou show me the most impor-
tant thing íor me to do next·" 1hen. ask them to mark the im-
portant areas on the brochure. Another wav vou can increase
vour health and cancer literacv is bv bringing a spouse or a íami-
lv member with vou. 1his patient na·igator could be a íamilv
member or íriend or someone whom vou trust that can go with
vou to help vou na·igate the health care maze. Such a person
might remind vou oí questions or concerns that vou ha·e and
will also listen to the pro·ider's answers. 1his person can help
vou to identiív speciíic additional questions that mav need to be
asked oí the pro·ider so vou can know exactlv what to do next.
(ancer patients oíten ha·e numerous procedures that must be
done as well as multiple medications that must be administered
and taken. lor these situations. the literate cancer patient or
caregi·er could ask a simple but speciíic question such as:
"(ould vou show me how to do that·"
Vulnerable populations oíten ha·e signiíicant health lite-
racv diííiculties and are challenged bv intercultural communica-
tion barriers to accessing and making sense oí rele·ant health
iníormation. Patients and caregi·ers írom such populations are
oíten coníused and misiníormed about health care ser·ices.
earlv detection guidelines. disease pre·ention practices. treat-
ment strategies. and the correct use oí prescription drugs. which
can lead to serious errors and health problems. 1hese popula-
tions with the lowest le·els oí health literacv are likelv to be
poorer and less educated than persons with higher health litera-


cv. 1he digital di·ide literature indicates that better educated
adults are much more likelv to search íor iníormation on the
Internet. whereas lower literate adults are not. Lower literate
adults ha·e less access to computers and the internet. and de-
creased capabilitv in terms oí reading and comprehending in-
íormation. 1hus. while the Internet can be a ·aluable source oí
health iníormation. one also has to be mindíul about those who
ha·e diííiculties accessing the Internet.
Now. let`s imagine that we can increase an indi·idual`s
health literacv knowledge and the person knows that it is impor-
tant to eat íruits. ·egetables and leaív greens. íiber. exercise
e·erv dav. get dental checkups and other checkups íor cancer
pre·ention i.e. colonoscopv. mammogram,. la·ing the know-
ledge mav be a íirst step toward leading a healthier liíe. but that
does not mean that the person will ha·e the skill or abilitv to
take action in terms oí eating healthier. exercising dailv. regular
dental check-ups. regular colonoscopv and mammogram ap-
pointments. etc. Ií the person li·es next to an oil rig. or near a
polluted ri·er in a neighborhood were there is easv access to íast
íood and con·enience stores. the person will be less likelv to go
jogging e·erv dav and will not eat much íarmer`s market pro-
duce. low-íat dairv products. extra ·irgin oli·e oil and so on.
1hus. increasing an indi·idual`s knowledge certainlv does not
guarantee healthier beha·iors and liíestvles. Much health iníor-
mation is deli·ered under stressíul conditions and circumstances
surrounding a particular diagnosis and prognosis. which oíten
brings about intense emotion and arousal that impacts an indi-
·idual`s abilitv to process the message being deli·ered. 1he step


írom cogniti·e processing and understanding to implementing
concrete action oí embedded healthv beha·iors in one`s liíe is a
missing link that each indi·idual and íamilv must íill in their
own unique wav. but communitv leaders can pa·e the wav to-
ward educating their communitv one neighborhood at a time.
Go·ernment and communitv leaders can help. not hinder. bv
creating and promoting health literacv inter·entions that can be
easilv implemented in communities as well as tools to measure
the health literacv oí a communitv.
Research has shown the signiíicance oí health literacv
and the importance oí patient-pro·ider communication in can-
cer care and its positi·e impact on health outcomes. lindings
írom the 2003 National Assessment oí Adult Literacv NAAL,
sur·ev re·eal that large numbers oí adults are constrained in
their abilitv to use e·ervdav print materials with accuracv and
consistencv.
low can vou íeel coníident that vou are trulv cavcer tite·
rate· lere are a íew aspects oí health literacv vou mav want to
consider as vou na·igate the complex and oíten coníusing
health care en·ironment.
1, low would vou deíine health literacv and describe
its importance íor cancer en·ironments·
2, low well can vou discuss the signiíicance oí pa-
tient-pro·ider communication and its speciíic impor-
tance related to pre·enting cancer. detecting cancer.
cancer diagnoses and treatment: sur·i·orship issues.
end-oí-liíe issues·


3, Do vou ha·e the abilitv to e·aluate speciíic eííorts
to impro·e patient-pro·ider communication·
4, Do vou ha·e the abilitv to implement concrete
techniques that can be emploved bv patients to im-
pro·e communication with health care pro·iders·
5, (an vou adequatelv describe the pro·ider's role in
supporting patient or caregi·er, communication
with health care pro·iders·
6, (an vou identiív speciíic actions and opportunities
that are a·ailable to cancer care pro·iders to support
patient and caregi·er communication with health
care pro·iders·
¯, 1o what extent can vou support clients to be better
patient communicators with their health care pro-
·iders·



Useíul websites to aid in health and cancer literacv:

http:´´www.todocancer.com´esp
http:´´www.nia.nih.go·´lealthIníormation´Publications´1alki
ng\ith\ourDoctor´.
http:´´www.nlm.nih.go·´medlineplus´talkingwithvourdoctor.h
tml
http:´´imsersomavores.csic.es´index.html
http:´´www.askme3.org´
http:´´www.aeccjunior.org´
www.4women.go·´1ools
www.centeríorplainlanguage.org
http:´´www.ahrq.go·´questionsaretheanswer´index.html
http:´´www.ahcpr.go·´consumer´quicktips´doctalk.htm
http:´´www.nationaljewish.org´disease-
inío´svmptoms´questions.aspx
http:´´íamilvdoctor.org´online´íamdocen´home´pat-
ad·ocacv´healthcare´83¯.html
http:´´www.air.org´naal

 
37




Chapter Two


Culture and Cancer Care


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.ee preci.ety becav.e tbey .bare a .ivitar cvttvrat bac/grovva ava .eev to
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acro.. tbe rorta. e.peciatty tbe teav. trov ´ovtb .verica ava ítaty. Da·
viete bate. goivg to tbe aoctor tor avy rea.ov. bvt be get. regvtar cbec/vp.
becav.e at tea.t tbey .bare vavy cvttvrat beattb betiet. ava attitvae.. ´ove·
tive.. Dr. ´itra vv.t reter Daviete to otber pby.iciav. ritb aitterevt .pe·
ciattie. ava aitterevt cvttvrat bac/grovva.. rbicb re.vtt. iv vvcb vore
trv.tratiov ava oreratt vvptea.avt beattb care e·perievce..

Not all health care is the same. and a person`s cultural back-
ground plavs a major role in the wav that thev ·iew. recei·e. and
communicate about health. In the broadest sense. the term cvt·
tvre includes who a person is based on their race. ethnicitv.
gender. age. religious preíerences. income. and educational
background. Although we all ha·e di·erse phvsical characteris-
tics that make us unique. culture pro·ides a distinct wav to look
at and experience the world around us. It is a dvnamic íorce in


societv. It is a wav to express oursel·es. It is a wav to create our-
sel·es. \e create culture ·ia our dailv con·ersations and our
dailv con·ersations create the culture in which we li·e and con-
duct our dailv li·es.
In terms oí the relationship between culture and health.
culture shapes ·alues and belieís about health. expectations íor
e·erv ·isit to a care pro·ider. knowledge. attitudes. organization
oí the health care svstem. and societal and cultural norms about
what it means to ha·e cancer. (ulture permeates e·erv part oí
our world and thereíore also has a tremendous impact on the
cancer care process. Personal cultural orientations. local culture.
regional culture. and national culture all impact health care be-
cause thev írame the policies and procedures oí the health care
svstem. and thev shape the wav in which health communication
occurs. lor cancer patients and their íamilies culture creates a
context íor communication and a set oí rules or norms about
how that communication will occur.
(ulture is also the íramework bv which members oí a
communitv construct and explain health related problems. Lx-
periences are deíined within the culture oí the patient based on
a constructed meaning íor each health care interaction. In other
words. vour ·iew oí cancer in general. what it means to ha·e
cancer. what is like to sur·i·e cancer. how to discuss cancer are
all constructed based on vour cultural orientation. (ross-cultural
communication occurs when a patient and his or her pro·ider
come írom diííerent cultural backgrounds. In cancer care. it is
important to recognize vour own cultural perspecti·e. and trv to


understand how it is similar or diííerence írom those around
vou.
1his chapter examines the impact oí culture on the wavs
cancer care is experienced. and the special communication chal-
lenges that can occur when a patient and pro·ider come írom
diííerent cultures. 1here are se·eral wavs that diííerences in cul-
ture can ha·e an impact on cancer care processes. 1he íirst ma-
jor source oí diííerence is whether the patient and´or pro·ider
come írom an indi·idualist or a collecti·istic culture.

Individualism-collectivism
(ommunication researchers describe how indi·idualismcollec-
ti·ism is a continuum used to explain similarities and diííerences
across cultures. (ultures with more oí an indi·idualistic orienta-
tion ·alue and exhibit characteristics such as independence. au-
tonomv. selí-reliance. and achie·ement. (ultures with more oí a
collecti·istic orientation place greater emphasis on groups. íami-
lies. and social status. Although no countrv is completelv collec-
ti·istic or completelv indi·idualistic and there are certainlv indi-
·idual and personalitv diííerences within each culture. examples
oí countries with more oí a collecti·istic cultural orientation are
tvpicallv described in the research literature as Spain. Brazil.
(hina. Pakistan. Japan. and India. (ountries that tend to exhibit
more indi·idualistic cultural tendencies include the United
States. Australia. Sweden. and Germanv. Oí course. there is
some contro·ersv o·er this dichotomv. which is much more
complex than described here but it gi·es vou an idea oí some


cultural similarities and diííerences in terms oí how cultures
·iew things like relationships and time and space in ·aried wavs.
Indi·idualism-collecti·ism has been used to examine
how cancer patients experience íacets oí cancer care such as
communication with íamilv and pain management. (ommon
characteristics associated with indi·idualistic cancer patients and
pro·iders are independence. autonomv. selí-reliance. and
achie·ement. Indi·idualistic cancer patients mav ·iew cancer as
more oí a personal matter. or mav resist relving on others during
cancer care. Indi·idualistic cancer patients tvpicallv desire to
maintain control oí their own bodies and their own li·es. Indi-
·idualistic pro·iders mav be less supporti·e oí shared íamilv
decision-making and communication. choosing instead to com-
municate primarilv with the patient about decisions and therapv
choices.
(ollecti·istic cultures on the other hand ha·e a greater
emphasis on groups. íamilies. and social status. In collecti·ist
cultures. a cancer diagnosis is not an isolating e·ent. but rather it
is oíten a reason íor increased íamilv cohesion and collecti·e
sacriíice during treatments. Instead oí thinking about cancer in
terms as onlv the patient. in collecti·istic cultures a cancer diag-
nosis can ha·e implications. such as social stigma. íor the whole
íamilv or group to which the patient belongs.
\here cancer patients írom indi·idualistic cultures mav
tend to think more about the impact oí cancer on selí-identitv.
collecti·istic cancer patients mav tend to íocus communication
on the impact oí the cancer on group harmonv and íunctioning.


In countries with collecti·istic orientations. there is more
likelv to be a social stigma attached to a cancer diagnosis. Some-
times it is taboo to e·en speak about cancer because it is ·iewed
as a death sentence. lor example. research indicates that in (hi-
nese culture. the stigmatization associated with certain illnesses
leads to a desire to a·oid iníormation and keep matters pri·ate.
In addition. íear oí public disclosure oí illness among (hinese
and Latino caregi·ers created barriers to iníormation-seeking
beha·iors such as looking at web sites íor health iníormation.
In íact. stigma mav occur because oí cultural misper-
ceptions about what it means to ha·e cancer. In some collecti·-
ist cultures íor example. a cancer diagnosis mav be seen as a sign
that a person li·es in an unbalanced or unhealthv liíestvle. and
can be ·iewed as a death sentence. lor this reason. some per-
sons írom collecti·istic cultures minimize the seriousness oí
their svmptoms. or e·en íail to acknowledge svmptoms. when
thev come in to a clinic or doctor`s oííice. Instead. the patient
will choose to suííer in silence until thev cannot take the pain
anvmore. Bv then uníortunatelv. the cancer mav ha·e spread or
become untreatable.
Lack oí iníormation about the exact causes oí cancer
mav be the source oí inappropriate stigma íor persons with can-
cer because others mav think thev got cancer because thev did
something wrong. or something to deser·e the cancer. 1hese
ideas cannot be íurther írom the truth. (ancer patients who
experience discrimination because oí cultural misperceptions
about cancer suííer two tragedies -the uníair discrimination. and
the cancer itselí.


(ancer care pro·iders should be aware oí the tendencv
oí persons írom collecti·istic cultures to a·oid conílict and
communicate in a wav that allows both the patient and pro·ider
to sa·e íace.` In terms oí communication about cancer. this
mav mean íailure to gi·e completelv honest answers to embar-
rassing questions. or to agree with therapv regimes that the pa-
tient does not reallv want to undergo. Disagreement oí anv kind
is tvpicallv a·oided. especiallv with a phvsician. who is percei·ed
to ha·e high status and power.
lamilv members írom collecti·ist cultures are more like-
lv to plav a major role in the cancer care process íor a lo·ed one.
1his mav mean se·eral íamilv members attending doctor ·isits
with a parent or grandparent. In an eííort to allow a cancer pa-
tient to sa·e íace`. some more collecti·istic íamilies mav preíer
to communicate directlv with the phvsician in an eííort to con-
ceal a cancer diagnosis írom the patient. lor instance. a studv in
Japan re·ealed that although their íamilv members were told
about the patient`s condition and prognosis. less than 25° oí
cancer patients were told that thev had cancer beíore thev died
oí the disease. 1he will oí the íamilv was taken to reílect the will
oí the patient. so the íamilv made treatment decisions and with-
held iníormation about the cancer to allow the patient less psv-
chological distress.
In the United States. this practice goes directlv against
the standard rules about iníormed consent írom patients about
their cancer treatment protocols. In other words. a patient can-
not make iníormed choices about care options unless he or she
is aware oí their diagnosis. lor this reason. cancer care pro·iders


mav not agree to honor a decision to conceal a diagnosis. e·en ií
it is common practice in the patient`s home countrv or culture.

Language Barriers
A second major barrier to cross-cultural communication in can-
cer care is language. \hen a patient and pro·ider do not share a
common primarv language. miscommunication can oíten occur.
Language barriers impede access to health organizations. dimi-
nish the potential qualitv oí health care ser·ices. and increase the
risk oí unintended health outcomes due to miscommunication.
Although most health care íacilities are required to pro-
·ide translators íor patients who ha·e trouble communicating in
the primarv language spoken in the clinic. translators are not
tvpicallv in·ol·ed in e·erv aspect oí patient care and decision-
making. and manv are poorlv trained or inexperienced with
translating medical iníormation. In addition to problems inte-
racting with pro·iders. language barriers in cancer care include
making appointments. locating appropriate health care íacilities.
reading signage in pro·ider oííices. completing patient intake
íorms. interacting with pro·iders. and reading prescription and
drug interaction iníormation. L·en when translators are used.
direct translation does not alwavs con·ev the intended meaning
oí the words. In íact. the same combination oí words in two
diííerent languages mav not produce the same meaning. íor ex-
ample. one studv íound that cancer terms such as "vearlv."
"mammogram."

"diagnosed." "risk íactors." "at risk." and "can-
cer", mean diííerent

things to Lnglish and Spanish

speakers.


In some cases. íamilv members who attend doctor ·isits
with their parents act as translators. L·en though their language
skills allow them to speak to pro·iders in another language. pa-
tients` íamilv members are not tvpicallv experienced with using
speciíic medical jargon. or detailing treatment options and drug
protocols. Moreo·er. íamilv members can be barriers to open
communication between patients and pro·iders ií thev need to
translate sensiti·e or embarrassing iníormation íor the patient.
lor example. Latino men being screened íor testicular cancer
are less likelv to share personal iníormation about their svmp-
toms ií a íamilv member is present.
L·en when the pro·ider and patient share a primarv
language. regional or national diííerences in the use oí that lan-
guage can impact the meaning oí communication. lor example.
a word or phrase that means one thing to someone írom Spain
mav not mean the same thing to someone írom Mexico or Ar-
gentina. Similarlv. terminologv related to cancer care in Britain
mav be totallv diííerent írom terms used in the U.S.. e·en
though Lnglish is the primarv language in both countries.
In addition to the actual words spoken bv patients and
pro·iders. the wav the words are used pro·ide clues to their
meaning. 1hese nuances are culturallv bound. In other words.
choices to sav or not sav certain things and the stress put on
certain words or svllables can change the meaning oí a message.
Someone not íluent in a language can miss the real meaning oí a
message e·en though thev belie·e thev understood what the
other person said.




latalism can be deíined as a belieí in the statement. "Ií someone
is meant to get cancer. thev will." latalistic ·iews oí cancer mav
stem írom cultural. racial. ethnic. religious. educational. and´or
socioeconomic diííerences among patient populations. 
Although religious belieís can oííer a sense oí hope íor cancer
patients and their íamilies. religious con·ictions can also lead to
a belieí that God. or some other higher power. ultimatelv con-
trols whether or not a person gets cancer. lor example. strong
religious belieís lead manv Latinos to belie·e illnesses such as
cancer are predetermined bv God. and should thereíore be ac-
cepted or endured in accordance with God's will. In these cases.
the patient and his or her íamilv mav also ·iew cancer treatment
as being onlv as eííecti·e as God`s plan íor the patient will al-
low. Sometimes patients with a strong sense oí íatalism are e·en
unlikelv to complv with treatment recommendations bv pro·id-
ers or seek treatment íor themsel·es or their íamilies because oí
this belieí.
1he religious belieís oí a patient can be ·erv important
to choices about treatments. especiallv when cancer is in an ad-
·anced stage. Pro·iders who work with terminallv ill cancer pa-
tients should be ·erv respectíul about the patient`s attitudes
about liíe aíter death. 1hose who ha·e similar belieís as their
pro·ider might íind comíort in talking about religious issues. or
engaging in religious acti·ities such as praving together.
On the other hand when pro·iders are not íamiliar with
the religious preíerences oí a particular culture or patient. pro-
·iders and health organizations can make serious errors in


judgment that result in miscommunication. or lack oí communi-
cation. abut the patient`s religious belieís. \hether the patient is
Buddhist. (hristian. Jewish. Muslim. lindu. Atheist. or some
other religion. pro·iders who come írom diííerent backgrounds
írom their patients still need to íind wavs to communicate in a
manner that shows respect íor the patients religious con·ic-
tions.

Gender Roles
Gender norms are closelv tied to culture. so cross-cultural
communication between men and women írom diííerent cul-
tures mav be diííicult unless both parties understand the cultural
iníluence oí gender on communication processes. 1he \orld
lealth Organization states that gender is a poweríul social de-
terminant oí health that interacts with other important íactors
such as a patient`s age. íamilv structure. income. education and
social support.
 is the term used íor biological diííerences. while
 is the term to diííerentiate between traditional roles oí
men in women based on culture. It is oíten belie·ed that biologv
determines diííerences in cancer incidence and mortalitv rates
such as women are more likelv to get breast cancer than men,.
howe·er. gender diííerences are also important. An example oí
how gender impacts cancer is that oí lung cancer. Although
men are statisticallv more likelv to get lung. some oí the reasons
íor this íact are based in gender issues. Men are more likelv to
work in occupations that expose them to occupational lung car-
cinogens. such as insecticides. pesticides and diesel. Men are also


less likelv to smoke low tar´nicotine brands that might be
·iewed as women`s cigarettes` because oí their thinner shape.
or because thev are marketed to women. \omen howe·er. mav
inhale more deeplv on cigarettes because the smaller. thinner
brands require a stronger inhalation. \omen are also more likelv
to choose to smoke as a means to reduce their weight. because
there are stronger social pressures on women than on men to be
thin. All oí these diííerences in potential causes oí lung cancer
can be traced to gender norms that are culturallv constructed.
lealth care pro·iders who ha·e a clear understanding oí
the cultural norms íor men and women in a particular culture
can ask questions and oííer iníormation to help that patient in a
more appropriate manner. lor example. some cultures ha·e
strict rules about how women must dress. and phvsical examina-
tions can be diííicult íor these women. Pro·iders who clearlv
understand the importance oí cultural traditions can be more
sensiti·e to their patients` preíerences based on gender.

(ertain cultures place great emphasis on a sense oí re-
spect íor persons in positions oí power. 1hink about how much
perceptions oí power impact the wav we communicate with
others. Although a doctor is likelv to tell a patient. Now I want
vou to make an appointment to see me again ií vou íeel anv
more pain.` is unlikelv that the patient would respond. Now
next time I come íor an appointment. I don`t want vou to lea·e
me waiting íor o·er an hour to see vou.` L·en though the ex-
change seems honest and clear. the íirst example would likelv be
·iewed as a reasonable instruction while the second statement


would might ·iewed as inappropriate. 1he reason íor this dis-
tinction is the power diííerence between the patient and the
pro·ider. Power is a cultural issue. and it diííers based on the
cultural context within which communication occurs.
1he power diííerence between patients and pro·iders
mav lead se·eral undesired outcomes íor cancer patients and
their íamilies. lirst. patients írom cultures that place a great em-
phasis on status mav ask íewer questions oí their phvsicians in
medical inter·iews because the patient is concerned about chal-
lenging the doctor`s authoritv. Despite a strong desire íor in-
íormation. patients and their íamilies mav resist asking diííicult
questions. or questions thev think might be ·iewed as tri·ial or
unimportant.
1he second major implication oí a strong sense oí cul-
tural diííerences based on culture is that pro·iders` attempt to
control medical interactions can dictate the wav the relationship
between the patient and pro·ider progresses. In other words.
patients need iníormation but thev also need comíort. aííilia-
tion. and respect írom pro·iders. 1he relational dimension oí
cancer care can be impacted bv power diííerences in pro·ider-
patient interactions.

Health Disparities
Impro·ing communication is central in impro·ing access to
health ser·ices íor all. 1here are signiíicant diííerences in the
o·erall rates oí disease and´or death among members oí speciíic
underser·ed cultural groups. as compared to the health status oí
the general population. 1hese diííerences occur in part because


oí biases. stereotvping. prejudice. and most importantlv because
oí a lack oí communication about health issues among certain
groups. Increasing health access or reducing disparities is direct-
lv related to understanding how culture impacts our health-
related attitudes. belieís. and beha·iors. 1his means not onlv
gaining a clearer understanding oí the impact oí culture on pa-
tients. but also how cultures plav a role in communication
among health pro·iders and health organizations responsible íor
the deli·erv oí medical ser·ices.
(ancer communication scientists seek to match the cul-
tural characteristics oí diííerent populations with speciíicallv
tailored approaches to health care and health communication in
an eííort to impro·e cancer care. New treatments. equipment.
and medications can cost millions oí dollars to de·elop. but
impro·ing cancer communication among persons írom diííerent
cultures has the potential do just as much in the íight against
cancer in a more cost eííecti·e manner. \hen a patient and
pro·ider come írom diííerent cultural backgrounds. íinding
common ground through communication can make both parties
íeel more comíortable and lead to better cancer care.
Issues oí cultural di·ersitv will continue to plav an im-
portant role in cancer care. As such. it is important to trv and
understand how to deal with diííerences that impact communi-
cation between patients and pro·iders. Our own cultural belieís
about cancer can sometimes be at odds the belieís oí others. and
this onlv enhances the need íor eííecti·e communication to re-
·eal and comprehend these diííerences.

 
51




Chapter Three


Caregiving and Communication


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erery ray po..ibte. bvt .be at.o /ver ber cbitarev veeaea ber to be tbere tor
tbev too.

1his chapter explores a number oí communication is-
sues´theories related to caregi·ing. including communication
needs oí patients and caregi·ers. hospice and palliati·e care. and
communication issues related to end-oí-liíe decision-making.
death. and dving. 1his chapter also pro·ides an o·er·iew oí kev
social support theories and processes as thev relate to cancer. It


will examine dilemmas oí social support. the relationship be-
tween support and health outcomes. and research on support
groups íor people coping with ·arious tvpes oí health issues in
cancer contexts.

Caregiving: 1heoretical and practical perspectives
Research has consistentlv shown that serious illness impacts the
li·es oí patients. their íamilies and lo·ed ones with a number oí
scholars making the argument that serious illness is indeed a
íamilv issue. Serious illnesses such as a cancer diagnosis add
demands. strains and hardships to íamilies who must deal with
numerous changes and decisions that impact the entire íamilv.
lamilies are oíten uniquelv qualiíied in terms oí understanding
patient attitudes and decision-making strategies and can there-
íore assist as an important resource in helping the patient to
make better decisions about their care.
lormal and iníormal networks are oíten in·ol·ed in the
cancer care process. lormal caregi·ers include people such as
the ·arious health care pro·iders vou encounter írom time oí a
cancer diagnosis e.g. primarv care phvsician. oncologist. nurses.
radiologists,. Iníormal caregi·ers tvpicallv include íamilv mem-
bers and close íriends. but also can include other people outside
the health care svstem in·ol·ed in vour care. Successíul negotia-
tion oí intersections between íormal and iníormal care termed
balanced coordination` are oí extreme importance in the e·ent
oí a cancer diagnosis. Such balanced coordination among the
·arious íormal and iníormal care networks can be trickv as ·ast
amounts oí health iníormation must be sorted through and de-


ciphered so that the best decisions can be made íor each situa-
tion.
Indi·iduals experiencing the more ad·anced stages oí
cancer oíten experience pain and discomíort írom the svmp-
toms oí their illness as well as psvchological distress írom the
illness and coping with their declining condition and mortalitv.
1he cancer patient and íamilv members arguablv go through
stages oí adaptation not unlike the stages oí adaptation so-
journers experience when entering and adapting to a new un-
known culture.
(aregi·ing is an extremelv diííicult and stressíul job
and in most cases. it doesn`t e·en draw a pavcheck! (aring íor a
íamilv member throughout the cancer experience can be highlv
emotional and phvsicallv taxing íor the caregi·er. It oíten be-
comes a íull time job íor the patient and the primarv caregi·er
due to the constant inílux oí doctor appointments. chemothe-
rapv and radiation regimens. etc. Most dependent older adults
in the United States who require long-term assistance currentlv
recei·e care írom íamilv members. Manv middle aged adults
íind that thev must care íor their older íamilv members and at
the same time must care íor their own children. Such íamilv
caregi·ers are termed the sandwich generation` due to the
competing roles oí caring íor older and vounger members oí
the íamilv. Perhaps. the most important element the new care-
gi·er must remember is to íirst take care oí vourselí. Similar to
the notion that a happv mama makes a happv household -a
stable. healthv. happv caregi·er can trulv ha·e more to oííer to
the íamilv member with cancer. (aregi·ers must continue to


take some time out íor themsel·es so thev can be there when
the patient needs them throughout the ·arious phases oí the
cancer care process.
(aregi·ing is oíten a longer term commitment and. as
such. the caregi·er must remain strong and steadv íor the
months and vears oí the caregi·ing marathon. In order to be
readv íor a marathon. the runner must take time to run and ex-
ercise e·ervdav. S´he must put in the mileage each week in or-
der to be prepared íor the marathon in the coming months. A
proper diet must be íollowed. Sleep becomes a top prioritv.
Running with a partner is oíten helpíul social support that aids
in accomplishing these goals. In the same wav. the caregi·er
must take time to train íor the caregi·ing marathon that lies
ahead. 1he mileage is diííerent than íor the runner. but the
energv le·el required phvsicallv and emotionallv is similar. Oíten
the social support needs íor the caregi·er are as important as íor
the cancer patient. 1his is a journev like none experienced or
imagined beíore. It is an experience that will change the wav vou
·iew the li·es around vou as well as vour own liíe.
lamilv caregi·ers are írequentlv asked to talk about
topics thev ha·e not thought much about beíore a cancer diag-
nosis. Such topics that arise might include chemotherapv. radia-
tion. needles. bowel mo·ements. loneliness. personal saíetv. and
intimate care. Such uncomíortable. stressíul. sociallv taboo. and
sensiti·e topics can cause íamilv caregi·ers to experience pe-
riods oí awkwardness and embarrassment ne·er beíore expe-
rienced. \hen caregi·ers pass on this iníormation to others.


humor is one mechanism a·ailable to help caregi·ers manage
íace-threatening situations.
Relati·elv íew people in our societv ha·e the íinancial
means to aííord a proíessional caregi·er íor their lo·ed ones. so
thev take on the responsibilitv themsel·es. As caregi·ers. marit-
al partners and íamilv members mav ha·e to spend an enorm-
ous amount oí time meeting the phvsical needs oí a parent. and
most people do not ha·e the experience. skills or training that
are necessarv to handle the immense responsibilitv oí caregi·-
ing. In the 21
st
centurv women are much more likelv than men
to become caregi·ers in our societv because oí íactors such as
women ha·ing a longer liíe span than men and the tendencv íor
men to marrv vounger women. In addition. women are oíten
stereotvped as more nurturing than men. and these perceptions
shape societal expectations that women are better suited as ca-
regi·ers than men. Uníortunatelv. these conditions and expecta-
tions ha·e led to a situation were women ha·e had to bear the
brunt oí caregi·er responsibilities in our societv. Manv oí these
íemale caregi·ers are older women li·ing on íixed incomes and
who mav ha·e limited íinancial and social resources. lopeíullv.
with the new millennium we will begin to see increases in
shared caregi·ing responsibilities across and within íamilies as
well as much needed shiíts oí the sole caregi·ing responsibilitv
most oíten burdening women. 1his will become particularlv
important as more and more women are entering and staving in
the workíorce and increasinglv taking on multiple roles. It is
time íor women and men to ha·e írank íamilv discussions in
creating a íamilv plan íor caring íor aging íamilv members. As


one pro·ides the care íor the aging parent. the other members
oí the íamilv will need to step up to take care oí the other íami-
lv responsibilities ie. laundrv. grocerv shopping. errands. clean-
ing. etc.,. (aregi·ing is an issue aííecting the entire íamilv -not
just the íemale aka: mom, in the íamilv!

Caregiver Roles
(aregi·ers plav a ·ital role in terms oí meeting patient needs.
and thev oíten deal with a number oí communication-related
issues that ha·e important implications íor the phvsical and psv-
chological well being oí patients and íor the caregi·ers them-
sel·es. Prior research suggests that the qualitv oí communication
among terminallv ill indi·iduals. their caregi·ers. and hospice
staíí iníluences patient and caregi·er outcomes. Although re-
searchers ha·e identiíied communication as an important part oí
the process oí pro·iding care. íew studies ha·e actuallv ex-
amined how speciíic communication ·ariables are related to
health outcomes oí people with long-term illnesses.
Some oí the manv responsibilities caregi·ers must
contend with include: a, pro·iding phvsical assistance and emo-
tional support to the patient. b, being a liaison between the
patient and an interdisciplinarv team oí pro·iders. c, handling
íinancial and social aííairs íor the patient. and d, monitoring
and communicating svmptoms íor pro·iders. 1hese responsibili-
ties present numerous communicati·e challenges íor caregi·ers
oí people with cancer enrolled in hospice programs. and we will
examine these in greater detail below.


Most primarv caregi·ers íor people diagnosed with
cancer are íamilv members and manv ha·e no training or capaci-
tv to competentlv deal with the phvsical and emotional stress oí
caregi·ing duties. \hile trained health workers pro·ide support
in terms oí pro·iding medical care and taking care oí a ·arietv oí
phvsical needs oí the patient. íamilv caregi·ers must handle a
·arietv oí tasks. including pro·iding emotional support. trans-
portation. managing íinances. monitoring svmptoms. coordinat-
ing schedules. increased housework. and running errands. and
caregi·er burden has been íound to increase as patients enter
into later stages oí the disease. 1hese acti·ities. coupled with the
stress oí coming to terms with the eminent death oí a lo·ed one.
can lead to phvsical and emotional exhaustion íor the caregi·er.
(aregi·ers` communication with their social network
and pro·iders can ha·e a positi·e impact on their stress le·els.
particularlv when thev are able to use their communication skills
to obtain assistance and emotional support. Uníortunatelv. care-
gi·ers oíten lack the di·erse communication skills necessarv to
eííecti·elv meet the needs oí the patient and their own needs.
One ·ariable that mav iníluence a caregi·er`s abilitv to use
communication to mobilize support írom his or her social net-
work is communication competence. Covvvvicatiov covpetevce
reíers to the abilitv to construct and use appropriate and eííec-
ti·e messages to meet goals´needs and to successíullv create and
maintain satisíving relationships. Researchers ha·e íound that
older adults with cancer and their caregi·ers with higher com-
munication competence had lower percei·ed stress le·els and


higher satisíaction with their support networks than indi·iduals
with lower communication competence.

Caregiving and Relationships
(ommunication between íamilv members mav exhibit a number
oí changes when thev take on caregi·er roles. Marital satisíac-
tion can be damaged bv the íinancial cost oí pro·iding íor child-
ren and parents. as well as the emotional costs associated with
the caregi·ing relationship. Married couples caring íor a parent
who report lower marital satisíaction report that the presence oí
a parent in the home reduces the amount oí o·erall communica-
tion time within the marital dvad. the amount oí pri·ate time
between couples. and increases certain tvpes oí communication
between the couple. such as decision-making. 1hese changes in
communication appear to aííect e·en long-terms marriages.
since thev ha·e been íound to experience declines in marital
satisíaction when the partners are caring íor an aging parent.
í..ve. ot bo.pice. pattiatire care. aeatb ava ayivg
Some people are uncomíortable with the words. hos-
pice. palliati·e care. and most certainlv death and dving. \e oí-
ten ha·e a diííicult time talking about these unknown issues and
as a result tend to ignore their existence as a part oí our li·es.
\hile vou mav ha·e general ideas about death and dving. vou
mav be wondering rbat e·actty i. bo.pice or rbat e·actty i. pattiatire
care.
ío.pice is deíined as health a group oí proíessionals and
·olunteers pro·iding medical. psvchological. social. or spiritual
care and support to terminallv ill indi·iduals and their lo·ed


ones. lospice íocuses on qualitv oí liíe. and issues oí peace.
comíort. and dignitv surrounding the death and dving expe-
rience. Pattiatire care also has the goal oí pro·iding qualitv oí liíe
while pre·enting or treating the disease svmptoms as earlv as
possible as well as the handling oí anv side eííects. psvchologi-
cal. social. and spiritual issues that are disease related. Palliati·e
care oíten is reíerred to as comíort care. supporti·e care. and
svmptom management. O·er the past two decades. hospice and
palliati·e care ha·e become popular options íor people íacing
terminal illness and their lo·ed ones. It is the desire oí most
patients with serious. incurable diseases to die at home. Dving at
home is associated with greater satisíaction bv berea·ed íamilv
members. lospice researchers in the cancer arena ha·e íound
that caregi·ers and patients iníluence each other ·ia interaction
in terms oí psvchological and phvsical outcomes because much
oí the dav to dav burden still íalls on the íamilv. lamilies and
patients needing hospice ser·ices should turn to hospice organi-
zations widelv a·ailable on the Internet as well as through health
care organizations that exist to pro·ide rele·ant and important
iníormation on hospice care options.
 


Reaching Out: Questions about Hospice
Depending where vou li·e. there mav be a ·arietv oí hospice
ser·ices a·ailable to vou or vour lo·ed one. Below are some
questions vou might ask vou pro·ider about hospice ser·ices ií it
becomes necessarv to consider as an option íor care. Sometimes
doctors do not oííer hospice ser·ices unless the patient asks
about them so being armed with questions about hospice might
help begin this important discussion. \ho is eligible íor hos-
pice·
1. \hen is the right time to start thinking about hos-
pice·
2. Are there inpatient íacilities in this area·
3. (an I get home hospice care in this area·
4. \ill I still need a constant íamilv member caregi·er
ií I choose to use hospice ser·ices·
5. Mv mom is eligible íor hospice ser·ices but she does
not want to discuss the topic because she thinks it
means she has gi·en up. low do I talk to her about
lospice·
6. \hat role does hospice plav in mv dav-to-dav cancer
care·
¯. \hat about nights when mv doctor is una·ailable.
Are hospice workers in charge oí mv care·
8. Gi·en mv diagnosis and situation. what other issues
should I be concerned with related to hospice·


Issues oí death and dving were relati·elv ignored until
the late 1960`s. Since that time indi·iduals ha·e increasinglv be-
gun to talk about the complex and diííicult uncertainties sur-
rounding dving and death. Most oí us who ha·e experienced the
death oí a close íamilv member or íriend li·e our li·es with
more depth. appreciation. enthusiasm. care. kindness. sensiti·itv.
and ·italitv than beíore such an experience. L·erv breath we
take suddenlv takes on more rele·ance than beíore. L·erv mo-
ment we are gi·en becomes special. L·erv e·ent and decision
has more purpose. L·erv interaction and relationship is signiíi-
cant. Oí course. we tend to more easilv íocus on the positi·e
relationships in our li·es. and more easilv let go oí the negati·e
relationships aííecting our li·es in negati·e wavs. Relati·elv little
theorv-based studies exist regarding hospice care and issues oí
death and dving. Researchers ha·e argued that empirical. theo-
reticallv dri·en research is needed surrounding diííicult issues oí
sur·i·orship. qualitv oí liíe. palliati·e and hospice care. as well as
loss. grieí. and berea·ement íor those diagnosed with cancer.

 
63




Chapter Four


Social Identity and Cancer Care


low would vou respond ií vou were asked write a description
oí vourselí based on the things vou ·alue. and the roles vou plav
in other people`s li·es. and who vou are as a person· 1o answer
this question. vou would ha·e to think about vour .ociat iaevtity.
or the labels vou wear in liíe that make vou unique. In liíe we all
belong to se·eral groups based on the roles we plav. and those
groups create our identities. Social identitv is the wav we deíine
oursel·es. and the wav others deíine us based on the groups to
which we belong.
1he íirst author oí this book íor example. might de-
scribe herselí bv writing something like. I am a scholar-teacher
oí health and cancer communication science and uni·ersitv pro-
íessor. I am a mom oí three adorable girls who dri·e me crazv at
times. I am a de·oted wiíe and dedicated parent. I am an a·id
runner but alwavs need more time to train. I am not a morning
person. I am a coííee íanatic. I am a lrancophile but married an
Italian who lo·es me despite that. I am an art lo·er with a back-
ground in art historv and photographv. I am a pseudo-
connoisseur oí (aliíornia chardonnav. I am a (hristian. but en-


jov Buddhist philosophv. readings. and meditation. I am a \est-
ern girl who lo·es classical music and all sorts oí alternati·e mu-
sic. but has grown to lo·e countrv music. I am a health nut most
oí the time. but lo·e a good burger. steak. and´or barbeque.
linallv. I will alwavs consider mvselí to be a caregi·er to mv dad
who died oí lung cancer in 199¯. Although I had been alreadv
studving issues surrounding health communication and aging
since 1992. it was aíter this experience that I began de·oting mv
liíe`s work to the studv oí cancer communication science.
1he second author oí this book might write something
like the íollowing: I am a 1exan transplanted to the Last (oast
oí the U.S.. I am married to a super-organized super dad who
adores me and who I adore. I am a scholar-teacher oí health
communication. I am a de·oted mom oí three girls and a bov
who all dri·e me nuts sometimes but I would not ha·e mv liíe
anv other wav. I am a Diet (oke íanatic and can`t get enough to
get through the dav. I am a gvm rat escaping when I can so I can
get a break. I am the child oí a two-time cancer sur·i·or. and
íinallv. I used to be a smoker. but manv vears ago I had the cou-
rage to quit and now de·ote mv liíe`s work to the studv oí
health and cancer communication science.
1hese are our current identities. Although we both ha·e
experienced cancer through our parents. thankíullv neither one
oí us has vet to experience a cancer diagnosis oursel·es. \hen a
person is diagnosed with cancer. it is easv to lose sight oí the
social identitv that existed beíore the cancer diagnosis. Someone
who was íormerlv ·iewed as a íriend` becomes a íriend ritb
cavcer.` a boss` becomes a boss ritb cavcer.` a dancer` be-


comes a íormer dancer who quit because she .` 1here
is tvpicallv a shiít írom an identitv not in·ol·ing cancer. to can-
cer oíten becoming a dominant part oí the o·erall identitv.
1he bodv is the íirst casualtv oí cancer. but social identi-
tv is sometimes the second casualtv oí cancer. 1hroughout our
li·es certain aspects oí who we are become more or less impor-
tant. and that is also true íor cancer patients. (ommunication is
the means bv which a cancer patient or caregi·er helps create
meaning íor the experience and shapes their newlv transíormed
identitv. Just as a person must íight to rid the bodv oí cancer.
sometimes a person must also íight to maintain a social identitv
that is not dominated bv a cancer diagnosis or treatment. Social
identitv is created bv the wav we highlight certain parts oí our
sel·es. and bv the wav other ·iew us. Acti·e awareness oí social
identitv can help cancer patients and their caregi·ers more acti·e
participants in the creation and maintenance oí a positi·e social
identitv.
\hen indi·idual`s íirst hear the word cancer` írom
their pro·ider. thev oíten experience a range oí emotions. \e
argue that an intergroup approach to the studv oí communica-
tion about cancer is important íor impro·ing the li·es oí those
aííected bv the disease. 1his chapter describes the wavs in which
group identiíications and stereotvpes can enlighten our under-
standing oí cancer pre·ention and treatment practices. as well
some oí the wide-ranging social processes surrounding the ex-
perience oí cancer. Identities and stereotvpes can iníluence the
wavs in which we express oursel·es. interpret others` beha·iors.
and generallv orient to those around us. In the current chapter.


we describe how an intergroup approach has been applied to the
studv oí health issues such as cancer. and how a cancer diagno-
sis can impact identitv in a ·arietv oí wavs.
(ancer-related identitv transíormation occurs when an
indi·idual`s social identitv is eclipsed bv a cancer diagnosis. In
this process. sometimes it can seem as ií all oí the parts oí a
person`s identitv that made them similar to others. or unique in
some wav. are o·ershadowed bv one íact. one bit oí iníorma-
tion. one thing that e·ervone wants to talk about behind closed
doors. or a·oid talking about when the person is present. S´he
has .
1he social identitv oí a cancer patient is all too oíten
completelv redeíined bv the wav others about. or reíer to. the
patient. It seems that the íacts that. she is a communication
proíessor in \ashington D.(..` or She has run a marathon
beíore.` become much less signiíicant to others as e·erv reíer-
ence to the person includes the word cancer. I was talking to
mv íriend Ann. She is the one with cancer.` Mv boss who has
cancer was in a meeting todav with our new client.` Did vou
see that ladv who looked like she has cancer·`
1he tendencv bv others to make note oí this íact is oíten
intended in a positi·e wav. such as to alert people to be extra
kind about phvsical signs oí illness. or understanding about a
missed meeting. 1he result howe·er. can íeel like nothing the
cancer patient has e·er done. or will e·er do again. matters be-
cause the onlv thing on e·ervone`s mind is cancer. 1his misper-
ception can lead to stereotvpes. and íeelings oí hopelessness or
isolation. lor manv cancer patients. the wav the world ·iews


who thev are is no longer rooted in a set oí group aííiliations
such as a dad. a runner. or a coin collector. Instead. identitv is
íormed bv membership in onlv one group - the group oí people
who ha·e been diagnosed with cancer.
Not onlv does cancer ha·e the abilitv to redeíine the wav
others ·iew the social identitv oí a cancer patient. but it can im-
pact íamilv members who act as caregi·ers to the patient. lor
example. patients and caregi·ers mav go to great lengths to con-
ceal a diagnosis írom íriends and íamilv just to a·oid a loss oí
normalcv. or a loss oí an existing social identitv. 1he impact oí
these actions mav diminish the ob·ious identitv transíormation.
but less ob·ious eííects will not diminish. lor example. manv
cancer patients and caregi·ers report an increased awareness and
acti·ities related to íederal healthcare spending. and begin to
·iew themsel·es as acti·ists. Other patients and caregi·ers re-
mo·e themsel·es írom social obligations in an eííort to stream-
line their social identitv and concentrate on the cancer treat-
ment.
1he role oí caregi·er can be an emotional and time-
consuming job. As such. caregi·ers` social identities are oíten
transíormed bv the experience. lor example. when the íirst au-
thor was caring íor her íather as he was dving oí cancer. the
caregi·er part oí her identitv was among the íirst and most do-
minant parts oí her ·iew oí herselí. 1he diííiculties and jovs
associated with caregi·ing were oíten the topics oí con·ersation
at that time. Now more than ten vears later. the idea oí being a
caregi·er still remains a part oí her identitv. but is not as promi-
nent as it was when she was li·ing it e·erv dav. 1o understand


how our identities. or our ·iews about who we are based on our
roles in the world. are transíormed during cancer care. it is im-
portant to look more closelv at social identitv theorv.
´ociat íaevtity )beory ava ívtergrovp Re.earcb
Social Identitv 1heorv SI1, has been applied to the
cancer context speciíicallv íocusing on issues surrounding can-
cer diagnosis. treatment. and reco·erv to the health communica-
tion literature. and most speciíicallv to issues surrounding cancer
diagnosis. treatment. and reco·erv.
SI1 is a broad theorv oí intergroup relations. which ío-
cuses on the meaning people assign to their identities. the wavs
in which thev guard them. and the wavs in which thev respond
when their identities are in jeopardv. It deals primarilv with iden-
tiíication with large social groups such as age or culture. but can
also be applied to smaller and more specialized groups such as a
íamilv unit or a speciíic disease such as cancer.
In terms oí cancer and cancer care. identities that ha·e
traditionallv been at the center oí this context get at core oí our
o·erall identities. such as our identities with large social groups
including cultural background. nationalitv. sex. or age. All oí
these broad parts oí our identities aííect us deeplv. Second.
there are more speciíic identities we mav associate with our gen-
eral health-related beha·iors. lor example. some oí us mav ha·e
negati·e health beha·iors such as being a smoker. while others
oí us mav ha·e positi·e health beha·iors such as being a runner.
1hird. unique identities exist íor those who ha·e been diagnosed
with cancer. lor instance. one`s increasing identitv as a sick per-
son. or cancer patient´·ictim´sur·i·or. (ancer is statisticallv


linked with certain group memberships. such as older adults.
smokers. and excessi·e sun bathers so it is important to look at
how our identities shape who we are and how we beha·e.

What is Identification?
In general. indi·iduals who identiív stronglv with a group are
those who see their group memberships as central to who thev
are. who are proud oí their group memberships. and who tend
to act in terms oí their group memberships. Identiíication is the
extent to which a particular person aligns them selí with a par-
ticular group. Identiíication is indicated bv speciíic beha·iors
that make a person more ob·iouslv deíined to the world as a
member oí a particular group. lor example. a person who likes
to cook mav join a cooking club. or an older person might
choose to join AARP.

Intergroup approach to cancer
1o better understand social identitv and its relationship with
cancer. think about the process oí pealing an onion. On the
outside oí the onion there are large lavers. As vou peal the
onion. the pieces get smaller. but thev might be thicker. or smell
stronger. Bv the time vou get to the core oí the onion. the smell
is so strong it can make vou crv! Our identitv is sort oí the same.
\e ha·e the parts oí oursel·es that are ob·ious to the world.
Gender. race. class. and age might be pieces oí our identities
that the world can see. But just like pealing an onion. we ha·e
lots oí lavers that make up who we are. As we peel back the
lavers. there are manv more part to our identitv. 1hev might not


be ·isible to the world. but thev are certainlv important in the
wav we see oursel·es. and the wav we communicate with others.
Instead oí lavers to the onion. research on social identitv
and cancer identiíies and applies three le·els oí identitv to the
cancer context. 1he íirst le·el is the privary iaevtity. when indi-
·iduals identiív with large scale social groups and those identiíi-
cations iníluence their susceptibilitv and coping with cancer.
Primarv identitv is the ·erv íirst or second thing vou would put
on vour list oí roles. I am a woman. I am Spanish. I am a moth-
er. \e stronglv identiív with certain parts oí oursel·es so we are
more likelv to trv and protect this part oí our identitv in ·erv
direct wavs. lor example. highlv identiíied rovev might be more
likelv to attend to breast cancer as a potential risk oí the aging
process and. thereíore. embed appropriate pre·ention strategies
into their li·es.
1he second le·el is the .ecovaary iaevtity. which reíers to
certain beha·iors that we enact that make us who we are. I am a
runner. I am a dancer. I am a smoker. Secondarv identities inílu-
ence cancer processes because manv times these are the parts oí
who we are that lead us to protecti·e beha·iors such as exercise.
or dangerous beha·iors such as smoking. lor example. those
whom identiív stronglv with smoking and being identiíied as a
smoker` will likelv ha·e a more diííicult time quitting smoking.
1hose who lo·e to sunbathe mav íind it diííicult to change their
beha·iors to reduce the risk oí melanoma. 1he things we do. are
our secondarv identities.
1he third le·el oí identitv is reíerred to as the tertiary teret.
when identiíication with cancer-speciíic entities will likelv come


into plav in terms oí identiíication. During this process íor ex-
ample. the label as a cancer patient. ·ictim. or sur·i·or becomes
important. In this case. indi·iduals whom identiív more stronglv
with being a sur·i·or rather than a ·ictim would likelv expe-
rience better health outcomes. In all cases. the issue here is that
an indi·idual`s conceptualizations oí her or himselí mav ha·e
the capacitv to change psvchological orientation and beha·iors
related to cancer. and hence to iníluence her or his health out-
comes. Identities can be understood as lavered and complex in
terms oí their interactions. 1hereíore. we plan on examining
cancer identitv. how indi·iduals experience ha·ing cancer` and
being a member oí that ·ulnerable group. and more speciíicallv
how that identiíication might be experienced diííerentlv íor an
older person.

Discrimination and Stereotypes Based on Identities
Research re·eals that discrimination as a result oí group mem-
bership can cause stress. An intergroup perspecti·e grounded in
social identitv theorv pro·ides a clear explanation íor the origins
oí stereotvpes and discriminatorv beha·iors. and hence helps us
in understanding the origins oí some oí these health diííeren-
tials. Ií íor example. a person is a member oí a particular group.
he or she mav be judged to possess all oí the characteristics oí
that group. In some cases. group characteristics ha·e implica-
tions íor cancer. 1o illustrate this we will use an application in
the íorm oí a scenario about Joaquin. Although Joaquin`s expe-
riences are not real. this application oí identitv in health will help
vou to understand how it might plav out in vour liíe.


. ó¨ year ota Me·icav·.vericav vav. ¡oaqviv i. aiagvo.ea ritb
pro.tate cavcer. íe´. .eeivg a Cavca.iav pby.iciav rbov re`tt catt
Moby. )be tact tbat ¡oaqviv i. Me·icav·.vericav vigbt bare covtri·
bvtea to tbe ai.ea.e iv tbe tir.t ptace. perbap. tbrovgb .ivpte grovp·
ba.ea .v.ceptibitity. ai.crivivatiov·.tre..·beattb tiv/.. or cvttvratty·
a..ociatea eativg´beattb bebarior patterv..

Stereotvpes oí social groups can iníluence diagnosis and
treatment. Phvsicians mav stereotvpe their patients. diagnosing
or treating medical complaints in wavs that íit commonlv known
risk íactors íor the groups to which the patient belongs. lor
example. older adults` svmptoms are treated as a normal` part oí
aging. as opposed to recei·ing treatment that would be routine
in vounger patients.

)be treatvevt ¡oaqviv receire. vay tbev be ivttvevcea tor e·avpte. iv
terv. ot tbe aoctor´. .tereotype. ava precovceptiov.. covvvvicatiov ait·
ticvttie. iv tbe evcovvter. ava perbap. ivtergrovp av·iety´vorv. te.g..
¡oaqviv aoe. vot .pea/ vvcb ívgti.b. ava i. vot a./ivg qve.tiov. be·
cav.e be tbiv/. it i. rvae to cbattevge tbe aoctor`. avtbority ritb qve.·
tiov.).

Identiíication can iníluence awareness oí links between
social group membership and illness. as well as pre·enti·e and
treatment practices. In other words. more highlv group-
identiíied indi·iduals would be more likelv to engage in appro-
priate pre·enti·e practices e.g.. regular pap smears or breast
selí-exams íor highlv identiíied women: or real men don`t need


help,. Ií a person does not highlv identiív with a particular
group membership. she or he is less likelv to enact pre·entati·e
practices íor that group I am not a hea·v smoker so I don`t
reallv ha·e to worrv about lung cancer,. 1he treatment process
mav then be impeded bv some oí these identities e.g.. ií Joaquin
is an unhealthv eater. to what extent does he identiív with those
eating patterns· Joaquin lo·es hamburgers and íries. but since
thev are not part oí the traditional Mexican diet. he does not
count them as being a regular part oí his liíestvle. le also does
not consider other eating patterns that are not consistent with
his cultural identitv.

Secondary Identities
It is clear that certain beha·iors can alter the risk oí cancer.
lrom the current perspecti·e. we are interested in the extent to
which identiíication with those beha·iors. or with groups that
are associated with those beha·iors. might iníluence cancer risks
and outcomes.

1ertiary Identities
Researchers ha·e argued that it is important to understand the
wavs in which indi·iduals identiív with their position as cancer
patievt.´rictiv.. as well as their identiíication as .vrriror.. It also
mav be the case that attention to speciíic terminologv matters
more than we mav initiallv think or pav attention to. A íurther
related area is the extent to which thev identiív as members oí a
speciíic group oí either patients or sur·i·ors e.g.. in the íorm oí
a support group,.


.va ot covr.e. tbrovgb tbi. proce.. ¡oaqviv ritt aeretop a .ev.e ot
.ett´iaevtity a. .vrriror´vov·.vrriror rbicb ritt ivttvevce bi. ovt·
cove..

1hrough this example. we intended to illustrate the
range oí important issues surrounding cancer that can be ad-
dressed using an intergroup íramework. A greater understanding
oí how identitv íunctions in the cancer en·ironment can help
create speciíic theoreticallv based message strategies íor patients
and pro·iders to consider as thev create. recreate. negotiate. and
renegotiate such identities across the continuum oí cancer care
írom pre·ention. detection. diagnosis. treatment. sur·i·orship.
and end-oí-liíe. 1raining and de·elopment programs could be
designed. íor example. to reduce identiíication with smoking
and other smokers. and increase identiíication with other groups
engaging in healthier beha·iors might ha·e a proíound eííect on
eííicacv and increase one`s chances oí quitting smoking!
75




Chapter Five


Provider Patient Interaction


ívva ra. av orgavi.ea. prote..iovat rovav rbo ra. recevtty aiagvo.ea
ritb brea.t cavcer. .tter ber aiagvo.i.. .be qvic/ty becave acqvaivtea ritb
tot. ot aitterevt veaicat per.ovvet rbo rovta be ror/ivg ritb ber avrivg ber
cavcer treatvevt protocot. ívva ravtea to bavate eacb retatiov.bip a. .be
aia erery otber retatiov.bip iv ber tite - prote..iovatty. ´be tett tbat it .be
covta try ava be a /vorteageabte. covptiavt. ava obiectire patievt. .be covta
ptay av actire part iv tryivg to beat ber cavcer.
)be probtev ra. tbat erery proriaer ívva vet baa a aitterevt
per.ovatity ava approacb to ber care. ava eacb ove gare ber .tigbtty aitterevt
ivtorvatiov abovt ber progvo.i. ava tbe aetait. ot ber protocot. ´be ravtea
to be a voaet patievt. bvt .be ra. evotiovat ava ottev tett too .ic/ to erev
tbiv/ abovt att tbe ivtorvatiov .be ra. gettivg abovt ber care.

1he shock and sadness that comes with a cancer diagnosis is
oíten íollowed bv a high degree oí íear and doubt about what to
do next. lealth care pro·iders can be a great source oí reliable
iníormation about treatment options and prospects íor reco·erv
at this stage in the cancer care process. leath care pro·iders
usuallv ha·e the knowledge and experience to answer manv
questions about the illness. but can rarelv anticipate and íulíill all
oí a patient`s iníormational. emotional. and psvchological needs.


1he relationship between health care pro·iders and cancer pa-
tients is ·erv complex.
Oítentimes. newlv diagnosed cancer patients relv hea·ilv
on their doctor íor iníormation about their condition and pros-
pects íor reco·erv. Nurses. social workers. phvsician`s assistants.
and laboratorv technicians also plav signiíicant roles in commu-
nicating with vou about cancer. and thev are ·aluable members
oí vour health care team. \our team oí pro·iders will be able to
talk with vou about manv topics that will arise during the cancer
care process. Since discussions with íriends and íamilv about a
cancer diagnosis can be emotional or scarv. some patients mav
look to health care pro·iders to take on a greater role in talking
with them about their concerns.
As discussed in the caregi·ing chapter. íriends and íami-
lv are a common source íor support and guidance about prob-
lems in our li·es. Ironicallv howe·er. íamilv members can some-
times be the hardest people to talk to about a cancer diagnosis.
e·en when thev are oíten emotionallv the closest people to us in
our e·ervdav li·es. Some patients don`t want to worrv íamilv
members too much. so thev trv to conceal their need to talk
about their cancer bv a·oiding the topic completelv. In addition.
íamilv members oíten don`t want to upset their lo·ed ones anv
more than necessarv. As such. thev tend to minimize or a·oid
serious discussions with the cancer patient. \hen a cancer pa-
tient does not ha·e a close relationship with íriends or íamilv
members beíore their diagnosis. it can be extremelv tough to call
a parent or old íriend to sav. li. remember me· I know we
ha·en`t talked íor ages but there is something I need to tell vou


- I ha·e cancer. \ould vou please be mv support svstem now
because I reallv need someone to be here íor me.` Moreo·er.
íriends and íamilv do not usuallv ha·e the experience or exper-
tise to answer e·en the most common questions asked bv cancer
patients. lor these reasons. communication with health care
pro·iders becomes the primarv place to ·oice a ·arietv oí íears.
questions. and concerns about the cancer care process.
In general. pro·ider-patient communication has three
major íunctions. 1he íirst íunction oí communication with vour
cancer care pro·iders is  1his mav sound odd at íirst but
tvpicallv e·erv íormal interaction in our li·es íunctions to estab-
lish the rules oí engagement. ` or how we are supposed to inte-
ract in that particular situation. 1he roles íor patients and pro-
·iders are negotiated írom their ·erv íirst meeting.
In tvpical pro·ider-patient interactions. the pro·ider has
control o·er the ílow oí iníormation because he or she asks
most oí the questions. and then gi·es out iníormation on topics
related to care. Phvsicians traditionallv ha·e a high status and a
signiíicant amount oí power because thev ha·e the abilitv to
sa·e li·es. lor this reason. it is ·erv normal to íeel powerless
when talking with them. especiallv aíter hearing about a cancer
diagnosis íor the íirst time. Although patients cannot choose to
 ha·e cancer. thev do plav a major role in choosing the wav
their communication with cancer care pro·iders will occur.
In other words. each interaction with a pro·ider is nego-
tiated. Patients and pro·iders come in to each ·isit with a set oí
objecti·es and a set oí needs íor iníormation. 1he relationship
with a health care pro·ider will be created o·er time and patients


share control about the wav in which the relationship is created
and maintained.
A íormal relationship between a doctor and patient mav
start out ·erv structured. with the pro·ider managing the tvpes
oí topics discussed and the ílow oí communication. but o·er
time control mav shiít to a less structured relationship between
the pro·ider and patient. As the relationship progresses. patients
ha·e more control o·er communication because thev share in
decision-making and topic selection íor interactions. In this wav.
patients are able to íreelv discuss topics with their pro·iders. ask
rele·ant questions. and ·oice concerns about their treatment
options.
1he second major íunction oí the pro·ider-patient rela-
tionship is  Aííiliation reíers to our desire to build a
relationship based on kindness. dignitv. and respect írom our
pro·iders. Research suggests most people would rather ha·e a
highlv competent phvsician who is not particularlv íriendlv. than
a ·erv íriendlv phvsician who is not particularlv competent at
treating cancer. lowe·er. the healthcare pro·iders who are able
to build an interpersonal relationship with their patients are the
least likelv to get sued íor malpractice. which suggests that rap-
port building is important! 1he most eííecti·e pro·ider-patient
relationships are those where the communication is used to
show kindness. build trust. and demonstrate mutual respect.
Aííiliation occurs when patients íeel thev can trulv connect with
their pro·iders o·er the length oí their relationship.
Pro·iders are human too. and it is human nature to want
to be treated kindlv. Sometimes patients or their íamilv mem-


bers treat pro·iders unkindlv because thev do not like the mes-
sage the pro·ider must deli·er about the status oí the patient`s
cancer. or because thev come írom a diííerent cultural back-
ground. or because oí limitations on treatment options that the
pro·ider can recommend. Remember. it is not íair to punish
vour pro·ider ií vou don`t like the news she or he deli·ers to
vou. It is reasonable though. to expect all pro·iders to consis-
tentlv exhibit compassion and honest communication during
each interaction.
1he third íunction oí pro·ider-patient communication
is that it is goat·airectea. meaning that each interaction is intended
to achie·e a common purpose. Perhaps that purpose is to decide
on therapv options. or perhaps that goal is to share iníormation
about the speciíics oí a cancer diagnosis. 1here can be se·eral
goals íor pro·ider-patient communication. and depending on
vour relationship with vour pro·ider and the nature oí vour ill-
ness. vou mav ha·e diííerent needs and diííerent expectations
íor the interaction. But sometimes vour goals íor a ·isit to the
doctor do not match with the goals oí the pro·ider. lor exam-
ple. despite vour right to ha·e undi·ided attention during a ·isit
to the doctor. vou mav íind that vour doctor is distracted bv
time constraints or bv a pre·ious interaction with another pa-
tient. 1hese situations can lead to miscommunication or a lack
oí communication on topics that are important íor the cancer
care process.
Other times. vou mav not íeel completelv successíul in
vour communication with vour doctor. e·en when vou think oí
se·eral questions in ad·ance. go there with a speciíic purpose.


and trv vour best to listen and interact with vour doctor. Aíter
all. going to the doctor can be scarv and exhausting! Sometimes
beíore vou see the doctor vou get dressed in a ·erv re·ealing
paper gown. and vou sit on an uncomíortable table under a
bright light. waiting íor the doctor to come in. Sometimes vou
can wait íor a ·erv long time until the doctor walks in. In íact.
some patients e·en report íalling asleep while waiting íor a pro-
·ider because thev ha·e to wait so long. Other patients are so
ner·ous that sleeping is not an option. 1here are no books. no
magazines. no Ipod`s. Iphone`s. or Blackberrv`s that can take
awav the íear and dread that can come with waiting íor the doc-
tor. especiallv when it comes to such a serious issue as cancer.
\hen the pro·ider íinallv does arri·e. it is not uncom-
mon to íeel instant coníusion and brain drain. almost like vou
can`t remember whv vou are there at all! \hen the pro·ider
walks in the door. she or he mav be reading vour chart or writ-
ing notes so it mav not seem like the right time to ask vour ques-
tions or bring up vour concerns. Manv times. reading the chart
is íollowed bv a series oí questions írom the doctor about svmp-
toms. treatment. and anv other de·elopments since vour last
·isit. linallv. aíter answering questions and undergoing a phvsi-
cal examination. the phvsician turns the con·ersation o·er to
vou. Do vou ha·e anv questions beíore I go·` the phvsician
mav ask. 1he ob·ious responses are to either sav no. or to ask a
question about the last topic the doctor discussed. It can be ·erv
diííicult to get back to other questions or topics that vou hoped
to address at the appointment. 1his requires changing topics and
bringing up issues that mav take time to discuss thoroughlv.


Ouestions such as how will mv treatment aííect mv sexual liíe.`
or where can I go to get a good wig` mav seem out oí place or
too diííicult to tackle in a short time. \hen the doctor seems in
a hurrv to get to the next patient. it`s not alwavs easv to achie·e
goal íor the interaction.
One positi·e de·elopment is that an increasing number
oí pro·iders are changing the structure oí patient interactions to
include time beíore or aíter an examination to a separate and
more producti·e time. which is tvpicallv when the patient and
his or her íamilv members, come into the doctor`s oííice to
ha·e a summarv discussion. Ií vou ha·e the abilitv to choose
vour health care pro·iders. vou mav want to íind pro·iders who
make these tvpes oí con·ersations a routine part oí each ·isit.
1ake notes during this time so vou can remember e·ervthing
that is said. la·ing another person there with vou will also help
vou achie·e vour iníormation goals because vou can both ask
questions and remember what is said aíter the ·isit.

Health Care Provider 1raining
Although most nursing schools teach courses in pro·ider-
patient communication. it mav come as a surprise that phvsi-
cians recei·e minimal training in medical school about how to
eííecti·elv communicate with patients. 1o make up íor this. thev
do a íair amount oí on the job learning` bv trial and error as
thev begin their medical careers. Medical school curricula are
íilled with classes in biologv. chemistrv. anatomv. and other
scientiíic courses. but thev do not include manv courses on top-
ics such as how to share scientiíic iníormation in easv to under-


stand terms. how to handle emotion or grieí in patient interac-
tions. or how to break bad news to patients in the most appro-
priate manner.
Based on the tvpe oí health care svstem within which
thev work. phvsicians can see multiple patients in a dav. each
one with a diííerent historv. a diííerent illness. and a diííerent
communication stvle. 1hat is whv it is important to establish a
good relationship with vour phvsicians through honest. direct
communication.
1hat mav sound simple. but all too oíten patients íeel re-
luctant to discuss certain topics or disclose certain iníormation
to pro·iders. Patients mav íail to disclose important iníormation
because oí time constraints. or because thev are aíraid to speak
up about diííicult or embarrassing topics such as alcohol or drug
abuse. A health care pro·ider can onlv treat svmptoms oí which
he or she is aware. and getting a total picture oí the health oí a
patient is an important step in cancer care. lor example. a pa-
tient who has been diagnosed with lung cancer mav be reluctant
to admit that she or he is still smoking cigarettes. But íailing to
be honest and direct with the doctor about this íact mav put a
person in extra danger because oí potential drug interactions or
the need to prescribe additional medications.
Uníortunatelv. most health care clinics and hospitals are
not set up to deal with patients as whole people. but rather thev
mostlv íocus on íinding wavs to íight the cancer through exami-
nations. tests. radiation. chemotherapv. or surgerv. L·en though
doctors ha·e a lot oí knowledge about cancer. thev mav not be
skilled at communicating with patients about e·erv aspect oí


what it means to be a cancer patient. In addition. doctors ha·e
alreadv spent vears in the health care setting and as a result ha·e
more experience with all aspects oí health care en·ironments. In
contrast. most patients ha·e not spent much time in health care
situations. hospitals. etc. and thereíore are more uncomíortable
and anxious with all the uncertainties and new experiences
brought about bv the new en·ironment.
Due to their limited communication training. health care
pro·iders mav tend to íocus more on the medical aspects oí
illness. and neglect sharing iníormation about the social. psvcho-
logical. and spiritual impact cancer mav ha·e on patients and
their lo·ed ones. L·en though we know these issues are so im-
portant to a person`s health. thev are not oíten part oí the tradi-
tional cancer care process. \our doctor is vour partner in care.
but based on vour unique relationship. he or she mav not be
comíortable or equipped to talk to vou about these areas oí vour
liíe.
Doctors are oíten trained to seek cures íor disease. so
thev tvpicallv íocus on medical iníormation sharing. 1hev mav
trv to limit the amount oí con·ersations about vou as a total
person bv asking íew questions. or changing the topic when vou
share ·erv personal stories during vour ·isit. Pro·iders mav
seem less interested in vou as a husband. wiíe. daughter. son.
mother. íather. proíessional. or íriend. and more interested in
vou as a set oí tests. and set oí numbers. a stage and size oí can-
cer growth. 1his is not necessarilv an indication that thev don`t
care about vou as a whole person. but rather just a íunction oí


their desire to íocus most oí their time and attention on vour
medical care.
lealth care pro·iders mav not communicate with vou
a. a totat per.ov íor a number oí reasons. lirst. phvsicians are
oíten trained in medical school based on the bioveaicat model oí
medicine. 1his approach íocuses on scientiíic explanations íor
illness and treatment. It requires direct e·idence and svstematic
methodologv íor ·eriíving and treating disease. Interactions with
pro·iders who stick to the biomedical approach to communica-
tion will be less interacti·e. and more íocused on speciíic ques-
tions about svmptoms and treatment. lrom the biomedical
perspecti·e. medicine is science. so communication between
pro·iders and patients should be aimed at sharing iníormation
rele·ant to treating the disease.
One positi·e aspect oí the biomedical approach to med-
icine is that vour health care pro·ider will communicate with
vou in a wav that puts the most emphasis on how to best deal
with vour cancer. In a world where time and monev are limited
in health care. the biomedical approach narrowlv íocuses on
cancer as a disease that must be íought in a scientiíic. svstematic
manner. (ancer is the enemv and vour pro·ider will íollow
strict. structured protocols to íight the cancer. 1he cancer is a
phvsical problem and the biomedical approach puts the phvsical
nature oí the illness íront and center in e·erv con·ersation.
e·erv decision. and e·erv test.
Second. the biomedical approach to pro·ider-patient in-
teractions mav be more comíortable íor some pro·iders and
patients so the interactions will go more smoothlv. \ou will not


spend too much time talking about diííicult personal topics such
as the impact oí the cancer diagnosis on vour íamilv. or on vour
íeelings oí sadness or anxietv. 1his helps the interaction remain
more íormal. and mav be helpíul in getting through diííicult
examinations or con·ersations about a negati·e prognosis. Pa-
tients might íeel more comíortable ií thev do not ha·e to talk
about diííicult topics. and pro·iders can keep their íocus on
íighting the cancer.
1hink íor a moment about how emotionallv diííicult it is
íor health care pro·iders to see cancer patients and their íamilies
in a clinic e·erv dav. Some patients walk awav cancer-íree. but
some do not sur·i·e. Pro·iders who build close personal rela-
tionships mav íeel more responsible íor the wav their patient`s
cancer progresses. Doctors ha·e a great amount oí skill and
training to íight cancer. but ultimatelv thev mav not be able to
control the course oí cancer care. Also. doctors who ha·e close
personal relationships with their patients mav íeel thev can`t be
as objecti·e about treatment and care options. \hen patients
share a great deal oí iníormation with their doctor about their
íamilv liíe. their hopes. their dreams íor liíe aíter cancer. the
relationship can turn írom being purelv proíessional to becom-
ing more oí a íriendship or partnership in the care process.
Some pro·iders íeel the mo·e írom strictlv proíessional rela-
tionships to more personal relationships with their patients is
too psvchologicallv diííicult and emotionallv draining to manage
on a regular basis. Ií it is diííicult to break bad news to patients.
it is e·en more diííicult to break bad news to patients with
whom vou ha·e a personal íriendship. Again. each relationship


between pro·ider and patient is uniquelv negotiated between the
two parties. lormal structure mav be replaced bv iníormal
íriendship. or mutual respect.
linallv. sometimes patients share personal iníormation
with their pro·ider that the doctor is not equipped to deal with.
lor example. doctors mav íeel ill-equipped to counsel highlv
religious patients who communicate with the pro·ider about
their íeelings about liíe aíter death. Some male pro·iders mav
experience diííiculties relating to their íemale breast cancer pa-
tients who need to discuss concerns about sexual intimacv.
linding a pro·ider who meets vour needs íor communication
about cancer and medical care is not an easv task. but ha·ing a
pro·ider who will listen and communicate with vou is just as
important as e·erv other aspect oí vour treatment. 1oo much
reliance strictlv on biomedical iníormation sharing can lea·e out
a set oí topics that need to be addressed during the cancer care
process. Uníortunatelv. allegiance to the biomedical approach to
illness mav lead pro·iders to neglect íeatures oí a patient`s dav-
to-dav world that mav impact their cancer treatment. Important
aspects oí the whole person. including one`s cultural belieís.
abilitv to cope with problems. íamilv situation and historv. and
íinancial status all plav parts in how well that person deals with a
cancer diagnosis.
No one oí part oí a person`s liíe can cause him or her to
li·e longer. but anv one aspect oí a person`s liíe can certainlv
make health care harder to deal with o·er a period oí time.
Don`t íorget that no matter how much vou hear about vou as a
cavcer patievt. vou are a whole person with a liíe and a selí outside


the pro·ider patient interaction. \ou are more than the sum oí
vour tests and numbers.
Regardless oí the tvpes oí treatments a patient under-
goes. or the goals oí cancer care. one oí the most important
aspects oí the pro·ider-patient interaction is that vour pro·ider
is the place where vou can get much oí the iníormation vou
need to share in decisions about vour care. Patient-pro·ider
communication ·aries greatlv in terms oí the amounts and tvpes
oí iníormation vou will recei·e írom vour pro·ider. Some rela-
tionships include lots oí iníormation about a ·arietv oí topics.
while other pro·ider -patient interactions are short. ·ague. or
onlv co·er basic iníormation and instructions íor the patient.
Remember. e·en though a cancer diagnosis can make vou íeel
tremendous uncertaintv about vour own liíe and vour destinv.
there are diííering wavs to vou can choose to manage the com-
munication with vour pro·iders.

Managing Provider-Patient Communication
1here are two wavs íor patients to trv and manage communica-
tion in the pro·ider patient interaction. Some people are ivtorva·
tiov .ee/er.. or people who come in to e·erv interaction with a list
oí questions written down and careíullv researched in ad·ance.
Iníormation seekers take control oí their situation bv plaving an
acti·e role in con·ersations with their pro·ider. Asking ques-
tions. expressing opinions. and ·oicing concerns can help vou
become an acti·e participant in vour care. It is ne·er good to
íeel powerless o·er vour situation. Acti·e communication and
iníormation seeking can help create a strong partnership be-


tween vou and vour pro·ider to sol·e problems and make deci-
sions about vour care. \our pro·ider can help vou íilter iníor-
mation vou mav ha·e collected írom other sources such as the
Internet. or through íriends and íamilv.
1he second wav to manage communication with vour
pro·ider is to act as an ivtorvatiov aroiaer. Iníormation a·oiders
choose not to engage in acti·e participation with their pro·iders
bv steering clear oí sensiti·e topics when talking to their pro·id-
er. Iníormation a·oiders mav íind it more comíortable to keep
awav írom diííicult iníormation about their prognosis. instead
íocusing on small talk with their pro·ider. Iníormation a·oiders
tvpicallv íeel that thev want to maintain their identitv or role in
societv írom beíore thev were diagnosed with cancer. 1he best
wav to do that írom this perspecti·e is to minimize con·ersa-
tions about anvthing to do with cancer. 1hese patients mav be
just as aware as iníormation seekers about the implications oí
their illness. but thev choose to handle their concerns in a dií-
íerent manner bv a·oiding iníormation on the subject and main-
taining pri·acv. e·en írom their phvsician.
Although there is a great need íor constructi·e commu-
nication between health care pro·iders and cancer patients.
there are barriers to open communication on both sides oí the
issue. Pro·iders mav choose to stick to biomedical iníormation
in an eííort to maintain a proíessional distance írom the patient.
and patients mav choose to a·oid iníormation in an eííort to
maintain some control o·er their pri·ate concerns. lear oí emo-
tional exposure and ·ulnerabilitv are possible outcomes íor pro-


·iders and patients who build strong personal relationships dur-
ing the course oí cancer care.

Kill the Cancer or Manage the Pain?
One oí the most important topics to discuss with vour doctor is
the goal oí vour cancer treatment or therapv. Some procedures
are diagnostic in nature. which means thev are designed to gi·e
vour doctor more iníormation about vour cancer. Once vou and
vour pro·ider ha·e a clear picture oí vour illness. vou should
turn vour con·ersations to the goal oí the next phase oí vour
cancer care. Depending on the stage oí vour cancer. vour health
care pro·ider mav either choose treatments that seek to kill the
cancer.` or else thev will trv to manage the pain` vou íeel írom
vour cancer.
Lííorts to kill the cancer` are therapies health care pro-
·iders use in a cvratire approach to íighting disease. which means
to use therapies designed to cure the cancer. 1he primarv goal
oí curati·e surgeries or radiation therapies is to kill or remo·e
the cancer cells. la·ing a ·erv honest con·ersation about the
potential beneíits and side eííects oí e·erv treatment option
helps vou be realistic about the potential outcomes and helps
minimize misunderstandings between vou and vour pro·iders in
the íuture. Surprisinglv. some patients undergo treatments with-
out a clear picture oí the intended goal. 1o a·oid miscommuni-
cation or íalse expectations about the potential beneíits and
harms that might come írom a particular therapv or surgerv.
communication with vour pro·ider is the onlv solution. lor
example. while most people would agree it is beneíicial to use


a·ailable medications and procedures to sa·e a person írom
suííering. the nature oí illness can make this a complicated issue.
(hemotherapv. radiation. and other curati·e treatments mav
onlv temporarilv íight the disease. and sometimes the side eí-
íects are diííicult to bear. 1hese approaches can ha·e negati·e
implications íor a patient`s qualitv oí liíe e.g. sickness írom
chemotherapv. loss oí hair írom radiation treatment. time spent
in the hospital while reco·ering írom surgerv,. Ií cancer care
pro·iders are not hopeíul about the possible outcomes oí cura-
ti·e treatments. a patient and his or her cancer care team mav
make a collecti·e decision not to take a curati·e approach to
care. 1his means instead oí choosing treatments that result in
spending íeeling sick or losing hair. a patient mav choose to
spend qualitv time with íamilv and íriends in their remaining
davs.
Based on vour stage oí cancer. vour doctor mav íeel it is
in vour best interest to include pattiatire care in vour treatment
process. In palliati·e care. the goal is to pro·ide the best qualitv
oí liíe possible íor vou as a cancer patient. Palliati·e care can be
used during a time when vou are getting cancer treatment. or it
mav be used when there is no more useíul treatment íor vour
disease. In this case. the íocus oí vour care will shiít írom killing
the cancer to managing vour pain. Palliati·e care looks at the
svmptoms associated with cancer and cancer treatment. includ-
ing phvsical. emotional. and spiritual problems. Palliati·e care
pro·iders work to deal with problems including pain. nausea.
loss oí appetite. depression. and íatigue.



Reaching out: Questions to Ask Your
Cancer Care Provider
Sometimes it is hard to know which questions to ask vour heath
care pro·ider. Although it is not necessarv to ask all oí these
questions. vou mav íind this list helps vou íocus on vour own
speciíic concerns beíore vour next ·isit. \our pro·ider mav an-
swer manv oí these questions in the course oí vour ·isit. but ií
he or she does not. it is períectlv acceptable íor vou to ask. 1his
list is not comprehensi·e. but it is a good place to start when
planning a con·ersation about cancer therapv. 1he answers mav
pro·ide vou a íeeling oí comíort that vou are in experienced
hands with vour pro·ider. and mav gi·e vou ·aluable clues about
who vour doctor is as a person.

1. low long ha·e vou been practicing medicine·
2. \here did vou go to school and what kind oí training
ha·e vou had related to mv tvpe oí cancer·
3. Are vou aííiliated with a speciíic cancer center or hospit-
al where I will need to go íor treatment·
4. (an vou describe mv treatment method in detail· \hat
are the side eííects I might experience· \hat tvpes oí changes
do I need to make in mv personal liíe during treatment·
5. low might I íeel aíter each treatment·
6. Do vou oíten work with other pro·iders in mv health
care team´ low regularlv do vou speak with them·
¯. la·e vou treated other people with mv kind oí problem
whom I can call·
8. low much will each treatment cost·


9. low long will it be beíore we know ií it is working or
not·
10. \hat is the best case scenario íor the outcome oí this
treatment· \hat are mv
odds oí achie·ing that outcome·
11. \hat tvpes oí special supplies might I need while I am in
treatment· \ill I need a
special bed·
12. \ill I need to get a wig· \ill I need constant compa-
nionship. or can I be alone during mv therapv·



93




Chapter Six


Communication in Cancer Care
Organizations


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te.t re.vtt. erer .ivce. Katberive ba. ´tage ² Metavova. ´be /vor. tbat
.oveove iv tbe ctivic ba. tbe re.vtt. ot ber te.t. bvt vo ove .eev. to be abte
to tett ber tbe ivtorvatiov .be veea.. ava vov ove cav erev tett ber rbo .be
.bovta .pea/ ritb to tiva ovt tbe re.vtt.. ´be ba. cattea erery aoctor .be cav
tbiv/ ot ov ber beattb care teav. ava ae.pite ber be.t ettort.. .be ba. .pevt
tbe ta.t tro aay. tearivg roice vait ve..age.. )o va/e vatter. ror.e. .be i.
vot .vre it ber iv.vravce covpavy ritt pay tor tbe te.t .ivce it ra. vot cov.i·
aerea e..evtiat tor ber treatvevt.

Although most would agree that healthcare is a íundamental
part oí societv. a wide ·arietv oí problems exist in the health
care institutions that deli·er care to cancer patients. Deli·ering
care to e·ervone who needs it is a monumental task. and coor-
dinated communication is at the core oí e·erv eííecti·e health
organization. 1he se·eritv oí some oí the problems with health-
care svstems could be alle·iated bv impro·ing communication
among pro·iders. between pro·iders and patients. among health
researchers. and among public health leaders and the public.


lealth communication researchers ha·e disco·ered that manv
costlv problems. such as high pro·ider turno·er rates. are oíten
related to issue oí communication.
Imagine an organization where there are se·eral bosses.
se·eral diííerent sets oí rules. se·eral diííerent costs íor the
same item. and se·eral diííerent procedures íor the same task.
(ancer care is complex in part because oí the organizational
structure oí healthcare in general.
Phvsicians tvpicallv ha·e their own oííice and oííice
staíí. which is one organization with its own rules and chain oí
command. 1he doctor will reíer patients to a hospital that has
its own organizational structure. oí which the doctor and patient
are a part. Lach oí the three parties: the hospital. the doctor`s
oííice. and the hospital. will communicate directlv with the other
two. and each will need to relav iníormation to the third partv
that thev get írom the second partv. Sounds coníusing· It can be
coníusing íor anvone. especiallv a cancer patient who is under-
going phvsicallv and mentallv demanding therapv.
A íourth partv is then added to the mix oí communica-
tors -the person or group who is responsible íor pavment oí the
expenses related to cancer care. \hether care is being paid íor
out oí pocket. bv pri·ate insurance. or a publiclv íinanced pro-
gram such as Medicare in the U.S.. there will be constraints to
what is allowed based on íinancial concerns. 1he tvpe oí pav-
ment will dictate how much pro·iders can charge íor their ser-
·ices. which ser·ices thev can oííer. and how much oí the cost
íor which the patient will be responsible. lor example. proce-
dures or medications that are deemed to be experimental` mav


not be allowable. All oí these issues will need to be communi-
cated to the patient beíore treatment begins.
Seeing specialists is tvpicallv necessarv. but it adds e·en
more chaos to the chain oí communication. Gaining appoint-
ments with specialists can take weeks or months. and when a
patient does get in to see the doctor. he or she is will need to
make certain that the specialist has all the diagnostic tests and
examination records írom the primarv phvsician and´or other
specialists who ha·e seen the patient.
All oí these lavers oí cancer care create a diííicult bu-
reaucratic svstem to na·igate. and can result in miscommunica-
tion. or e·en a total íailure to communicate. among all the par-
ties in·ol·ed. 1he specialized nature oí cancer care and the
complexitv oí the health care svstem. howe·er. make coordi-
nated communication a ·ital part oí successíul cancer care
processes. 1here is no room to let important iníormation íall
through the cracks` during this progression.
\hen a patient is newlv diagnosed with cancer. she or
he is .ociati.ea into cancer care. 1his íorm oí organizational so-
cialization is similar to being socialized into anv other organiza-
tion. like when a person gets a new job. 1here is oíten a new
title or role associated with a new job. In the same wav. cancer
patients take on a new title and role in their own care.
Orgavi.atiovat ´ociati.atiov means gaining and managing
rele·ant iníormation about how to na·igate through a cancer
care organization. It is the process oí adjusting to a new role oí
selí-ad·ocate íor eííecti·e cancer treatment or therapv. It is
learning about all the plavers on the cancer care team. In the


case oí health care organizations. the íocus should be on adapt-
ing the organization or perceptions oí the organization to the
indi·idual patient. Research on organizational socialization gen-
erallv reíers to a three-step process including an anticipatorv
phase. an entrv phase. and an assimilation phase. (ancer patients
in the avticipatory pba.e oí socialization recei·e general iníorma-
tion and íorm opinions about the larger health care svstem. and
about speciíic health organizations.
1he second phase. orgavi.atiovat evtry. begins when a
member íirst interacts with the health care organization. and
mav include an orientation oí with a representati·e oí the organ-
ization. as well as printed materials or ·ideotapes. Patients íind
out about treatment protocols. and learn terminologv related to
their disease.
linallv. the a..ivitatiov phase is when cancer patients gain
a clearer understanding oí patient and pro·ider roles in cancer
care. and gain a better picture oí how each plaver is allowed or
expected to participate in health decision-making. 1he patient
begins to make sense oí what it means to be part oí a cancer
care organization. and aligns his or her personal ·alues. goals.
and expectations with others.
Some research suggests that organizations do not reallv
exist outside human interaction. but rather are constructed bv
on continued human interaction. In other words. a patient`s
unique cancer care team does not exist beíore that person rece-
i·es a cancer diagnosis. 1he team`s sole task is to treat the pa-
tient`s cancer and promote healing based on the person`s unique
medical condition. social and psvchological state. and íinancial


resources. 1he patient and team communicate to achie·e that
goal.
1he process oí .ev.eva/ivg íor a patient occurs based on
simultaneous action and interpretation oí action between and
among the health care team. Aíter a diagnosis. there is a need
íor iníormation exchange and the creation oí shared meaning
that in turn generates a new organizational structure. In this
example. an organization or health care team is reallv a process
oí bringing order out oí chaos and organizing a new realitv íor
the cancer patient. Although the patient will relv most hea·ilv on
her or his primarv doctor. there will be a whole team oí proíes-
sionals who will come together in the process oí organizing.

Health Care 1eam Communication
Although hospitals mav be ·iewed as a central organizational
structure íor health care deli·erv. patients tvpicallv interact with
members oí a ·arietv oí organizations during the cancer care
process. A hospital mav be just one place where care occurs.
including doctors` oííices. specialtv clinics. diagnostic technolo-
gv centers and surgerv centers. 1he íact that cancer care almost
ne·er occurs in just one phvsical location íor a patient requires a
concerted eííort to de·elop and coordinate communication be-
tween and among all parties who deli·er care íor that patient.
Similarlv. patients oíten think in terms oí one doctor or
health care pro·ider who is in charge oí their care. 1he old
model oí a íamilv doctor whom is present írom birth until death
rarelv exists in todav`s world. In realitv. it is rare to recei·e all


health care írom just one pro·ider. especiallv aíter a cancer di-
agnosis.
Ideallv. the health care team works together to make de-
cisions and pro·ider coordinated care. Sometimes the commu-
nication among team members is a regular part oí the dav. but
sometimes the amount and qualitv oí communication about
patients is limited bv time and conílicting schedules.
L·en though manv phvsicians and surgeons work long.
irregular hours. íinding time to communicate about patients
with other health care pro·iders takes a back seat to communi-
cating directlv with patients and their íamilies. In health organi-
zations there are se·eral characteristics oí eííecti·e health care
teams to look out íor as a patient. It is completelv acceptable to
ask important questions about the team pro·iding vour care.
Some important issues to consider:
!bat i. tbi. beattbcare teav´. cottectire teret ot e·perievce.
1eams will most likelv include phvsicians. and surgeon
with vear oí experience with cancer patients. and some residents.
interns. or medical students who ha·e signiíicantlv less expe-
rience.
!bat are tbe vorvat patterv. ot ivteractiov ot tbi. teav.
1his question includes regular hours when team mem-
bers might be a·ailable to meet with patients and íamilv mem-
bers. Also. are there íormal leaders in the group to whom vou
should direct important questions about vour care· Do certain
team members ha·e specialized iníormation about which vou
should be aware. Sometimes just knowing who the correct per-
son is to ask questions can impro·e vour abilitv to get timelv


answers. and make sure vour concerns are made clear to the
right audience.
\hen vou suspect vour team mav not be communicat-
ing with each other on a regular basis. it becomes especiallv im-
portant to know the best time. and to whom vou should direct
vour questions. 1eams that meet ·erv earlv in the morning íor
example. like those who work in hospitals. mav not communi-
cate with each other again íor the rest oí the dav. Making sure to
get vour questions to the right person in ad·ance oí that morn-
ing meeting can mean the diííerence between getting and answer
on that dav. or waiting 24 hours until the team meets again.
í. yovr teav airer.e ba.ea ov tbeir cvttvrat. .ociat. or .ocioaevo·
grapbic bac/grovva.. ava iv retatiov to yovr orv .ocioaevograpbic cbarac·
teri.tic..
Some patients íeel more comíortable with a pro·ider
who is oí the same sex. or about the same age. or írom the same
cultural background. Research suggests íor example. that wom-
en patients tvpicallv íeel most comíortable communicating with
women pro·iders. lealthcare teams are oíten comprised oí
persons írom a ·arietv oí backgrounds. but as a patient it can be
beneíicial to understand which team members might identiív
most closelv with vou as a patient.
ít yovr beattbcare teav i. aitterevt trov yov ba.ea ov .ocioaevo·
grapbic cbaracteri.tic.. ao teav vevber. .eev to e·bibit cvttvrat .ev.itirity
to patievt. trov otber cvttvre..
Anv percei·ed bias or prejudice exhibited bv members
oí vour healthcare team should be noted and reported to orga-
nizational leaders immediatelv. 1his is especiallv true ií vou íeel


that vou are not recei·ing qualitv care because oí vour own cul-
tural background.
Doe. tbe beattbcare teav appear to be .ati.tiea ritb tbeir iob..
Oíten high job satisíaction. or a íeeling that vour job is mea-
ningíul and rewarding. can lead to less turno·er. less burnout.
and more cohesion in work teams. Ií vour health care team has a
high degree oí job satisíaction. thev will be more likelv to treat
patients with a high le·el oí respect. which can contribute to
patient satisíaction and better health outcomes. (oordination
among team members is more likelv to occur on a regular basis
because the team is more likelv to ha·e worked together íor a
longer period oí time.
Do yov ritve.. avy covttict betreev vevber. ot yovr beattbcare
teav. (onílict might be harsh words about a missing chart. an
o·erlooked request íor assistance. or an unreturned page or
phone call. 1eam members who exhibit signs oí conílict are less
likelv to ha·e consistent. meaningíul communication with each
other about vour case and concerns. In this situation. be sure to
repeat kev questions or problems to each team member as vou
see them. Do not assume team members are sharing vour in-
íormation with each other. In addition. when iníormation is
shared. it is more likelv that misunderstandings or reíraming oí
vour concerns will occur. (onílict in health organizations can
occur without impacting patients. but when vour healthcare
team seems to exhibit consistent conílict or harsh words to or
about each other. as a patient vou do not want to get caught in
the middle. Be honest with vour pro·iders about anv conílict


vou witness. Let them know ií it makes vou uncomíortable. and
report extreme concerns to leaders oí the health organization.
Although as a patient it is not usuallv possible to com-
pletelv change vour health deli·erv team based on percei·ed lack
oí eííecti·e communication. asking vourselí these questions can
help re·eal potential crac/.. or places where iníormation could
be lost or misrepresented. 1aking a good look at the communi-
cation oí the health deli·erv team allows patients to íoreshadow
potentiallv serious issues that might impede qualitv care. 1aking
an objecti·e look at how a cancer care team organizes them-
sel·es and exchanges ·ital iníormation.

Learning Organizations
A learning organization is an organization that gains knowledge
írom continuous processes oí iníormation exchange between
the organization and the en·ironment. 1o contextualize this
concept in terms oí cancer care. the organizational structure in
charge oí deli·ering health care to a cancer patient needs to íuse
together a coherent plan íor each patient bv sharing iníormation
and adapting based on de·elopments that occur along the wav.
Instead oí íunctioning as a slow-mo·ing bureaucracv. health
care deli·erv svstems should take responsibilitv íor their own
íunctioning and adapt to meet the needs oí the patient. 1his
process occurs though eííecti·e communication among all the
parts oí the svstem.
Senge oííers íi·e disciplines that can be applied to can-
cer in eííecti·e health deli·erv svstems. ´y.tev )biv/ivg is the
abilitv to think about connections and patterns oí svstems as a


whole is exempliíied when all parties in the cancer care process
keep a larger ·iew oí total picture íor each patient. and do no
get too bogged down in anv one part oí the whole svstem. Per.ov
Ma.tery occurs when each phvsician. nurse. technician. billing
agent. and specialist spends countless time leaning his or her
craít. Learning organizations are ones in which all oí these par-
ties demonstrate a commitment to learning more about each
other and anv other new de·elopments in their íield. Patients
too should be open to learning new ideas or ·iews oí the cancer
care process as well.
Mevtat Moaet. are deeplv ingrained assumptions. generali-
zations. or pictures oí how the cancer care process occurs. that
impact the perspecti·es and beha·iors oí health care deli·erv
teams. Ií a team ·iews the world in terms oí the wav we ha·e
alwavs done things.` thev will be less likelv to integrate cutting-
edge technologv or use oí non-traditional therapies. Mental
models also impact communication because persons in learning
organizations create new wavs oí doing things that require new
communicati·e channels.
1he process oí ßvitaivg a ´barea 1i.iov occurs when the
whole cancer care team creates and shares a mental picture oí
the íuture thev all hope to create. In most cases this means all oí
the things that will need to occur to mo·e someone írom being
a cancer patient to being a cancer sur·i·or. \hen a clear ·ision
oí sur·i·orship moti·ates e·erv action oí the health care team.
all members can excel and learn to make that ·ision a realitv.
linallv. Senge stresses that learning must start with
communication or )eav íearvivg. 1his means the most eííicient


cancer care occurs when all parties reallv work together means
and take time to recognize places where communication among
all the units can be impro·ed to increase eííecti·eness.

Organizational 1ypes
Although hospitals mav be ·iewed as a central organizational
structure íor health care deli·erv. patients tvpicallv interact with
members oí a ·arietv oí organizations during the cancer care
process. A hospital mav be just one place where care occurs.
including doctors` oííices. specialtv clinics. diagnostic technolo-
gv centers and surgerv centers. 1he íact that cancer care almost
ne·er occurs in just one location íor a patient requires a con-
certed eííort to de·elop and coordinate communication between
and among all parties who deli·er care íor that patient.
In addition to the health organizations discussed so íar
in this chapter. it is important to note the unique structure and
íunction oí communication in hospices. Although hospice or-
ganizations oíten work in concert with other cancer care team
members. the goal oí hospice makes communication in hospice
en·ironments distincti·e. lospice organizations are designed
speciíicallv to support terminallv-ill patients and their íamilies.
Some hospice organizations are housed within hospitals. some
are in stand-alone buildings. and sometimes hospice team mem-
bers ·isit patients in their own homes. Regardless oí the phvsical
location oí hospice. the organizational goals are to impro·e the
qualitv oí a patient's íinal davs through a change in the íocus oí
care írom attempting to cure cancer to attempting to manage
the pain and suííering oí the patient.


lospice care is deli·ered through a coordinated com-
municati·e eííort bv speciallv trained proíessionals. ·olunteers
and íamilv members who seek to reduce pain.
(ommunication related to hospice is unique because it mo·es
past discussions centering exclusi·elv on phvsical discomíort to
explore the emotional. social and spiritual impact oí the disease
on the patient and their íamilies. Part oí the mission oí hospice
organizations is to help patients and their íamilies begin to deal
with the ine·itable grieí and distress that come with a terminal
cancer diagnosis. 1his requires communication that stresses
comíorting messages and is most successíul when doctors can
pro·ide support to íamilies whose lo·ed ones are near death.
1he channels. íormat. and content oí communication in
cancer care organizations all seek to achie·e a balance between
the tasks oí cancer care on one hand. and relationships among
organizational members on the other hand. lealth organizations
that are comprised oí members who eííecti·elv balance the tasks
and relationships in the group tend to ha·e members who are
more satisíied. more team-oriented. and ultimatelv more suc-
cessíul at maximizing the potential oí health care deli·erv. Al-
though no amount oí communication can change the outcome
oí cancer íor some patients. eííecti·e communication within the
health care organization can make the experience oí cancer care
more positi·e íor patients and their íamilies.

105




Chapter Seven


New Communication Technologies and
Mediated Approaches to Cancer Care


íteva. .riavva. ava .tbeva are .i.ter.. )bey are cov.tavtty a./ivg tbeir
parevt. pervi..iov to too/ vp ivtorvatiov ov tbe ívtervet. !bev ove .i.ter
ba. av aitvevt tbe otber tiva. tbe tate.t ivtorvatiov .be cav ava te·t. ber
.i.ter ritb oraer. to try tbi. or tbat. )beir vov. íti.abetb ottev too/. vp
tbe vo.t recevt beattb ivtorvatiov tor tbe re.t ot tbe tavity. )beir grava
vov. Maria rait. tor ove ot tbev to catt ber ritb tbe tate.t ivtorvatiov tor
tate.t tavity arava). Maria preter. to go ov tbe ívtervet to tiva trieva. iv
tbe cbat roov. tbat bare e·perievce. ava aitvevt. ti/e ber. ava teare. tbe
otber ivtorvatiov·.ee/ivg avtie. to tbe re.t ot tbe tavity. )be vev iv tbe
tavity preter to tocv. ovty ov .torie. abovt beattb tbey ratcb ov teteri.iov.

In recent vears. the wav we communicate has been transíormed
bv the widespread adoption oí the cellular de·ices. the Internet.
contemporarv soítware programs. and other new technologies
used íor communication. In a Januarv 2008 Meaia Po.t Pvbtica·
tiov. article. new research írom i(rossing indicated that about
60° oí all adults use the \eb to íind health and wellness in-
íormation. lealthcare consumers use technologv to obtain
health iníormation and communicate with pro·iders. lriends
and íamilv share health concerns and communicate with each


other about health issues in dailv liíe. (omputer networks help
create and maintain social networks bv linking patients. pro·id-
ers. íamilv members to health organizations. and to knowledge
about health care topics.
All communication is impacted bv the channel through
which it occurs. so there are inherent diííerences between íace-
to-íace communication and computer-mediated communication
(M(,. lirst. íace-to-íace communication such as communica-
tion that occurs at a ·isit to the doctor. allows íor each partici-
pant to send ·erbal and non·erbal messages throughout the
con·ersation. 1he words themsel·es and the wav the words are
spoken oííer important clues about the meaning oí the con·er-
sation. Lmotional displavs such as a smile or a tear can be seen
bv participants to help oííer additional meaning to the discus-
sion.
On the other hand. because íace-to-íace communication
is much more spontaneous than written con·ersations that oc-
cur through email or text messages. there is more likelv to be
miscommunication due to word choices and misinterpreted
non·erbal cues. \hen a pro·ider is writing instead oí looking at
a patient during a con·ersation. this mav be a signal to the pa-
tient that the pro·ider does not care about the con·ersation.
lace-to-íace communication does not allow íor anonvmous
questions. and the íact that both participants can see each other
mav limit the topics that are discussed.
(omputer-mediated communication (M(, diííers írom
íace-to-íace communication in se·eral important wavs. lirst.
computers allow íor anonvmitv íor participants in chat rooms or


online support groups. 1his íeature oí (M( adds to the abilitv
oí patients to seek out iníormation on embarrassing or coníus-
ing topics. Second. the online communitv íor cancer patients
and their íamilies is open 24 hours per dav. and access is íree to
anvone who has a computer. Reading and´or writing a blog can
be therapeutic íor some patients. and (M( allows those with
similar ideas to connect in cvberspace. 1he sense oí loneliness
and isolation experienced in the past bv some cancer patients
can be diminished bv access to (M(.
Uníortunatelv. not e·erv patient has access to a comput-
er. or knows how to access credible iníormation about cancer.
1he increasing expectation that patients will use computers as
part oí their care creates a gap between those who ha·e access
and those who do not ha·e access to computers. (M( can also
be a source oí miscommunication because oí its lack oí social
and emotional cues that are present in íace-to-íace con·ersa-
tions. Although some cues such as adding a : to a written
statement, are used on occasion. there is signiíicantlv less con-
textual iníormation transmitted bv written words. 1o sav. I íeel
reallv sick todav.` can be much diííerent than writing the same
words. 1he meaning mav be diííerent based on the wav the
words are spoken. \ritten communication does not oííer the
same ílexibilitv as spoken language.
1here is no doubt that communication technologies will
continue to signiíicantlv impact the wavs in which we communi-
cate about health. 1he term most commonlv used to encompass
the broad intersection between medicine and technologv is 
 L-health encompasses all íorms oí computer-mediated


health communication including telemedicine and electronic
medical records. (ommunication about cancer occurs e·erv dav
·ia e-health channels.
)eteveaicive is the use oí technologv as a link to pro·ide
health care to indi·iduals who are not geographicallv close to
their health care pro·iders. 1elemedicine is a practical wav íor
patients who li·e in rural areas. or those who are too sick to
tra·el to see specialists. to access heath care. It íocuses speciíi-
callv on the deli·erv oí health care ·ia ·arious íorms oí technol-
ogv. including telephones and computers.
ítectrovic veaicat recora. can be accessed ·ia remote loca-
tions through the use oí computers. Llectronic medical records
communicate a patient`s ·ital iníormation to pro·iders who
access them. 1he beneíit oí this process is that records can be
retrie·ed írom remote locations. and iníormation can be easilv
shared among a health care team. lor cancer patients and their
íamilies. this can eliminate lengthv descriptions oí pre·ious
treatments and diagnoses e·erv time a new pro·ider joins the
cancer care team. Instead oí recounting e·ervthing that has hap-
pened to a patient. the pro·ider can read all the pertinent iníor-
mation in a centralized database.
\ithin the larger íield oí e-health. there are a mvriad oí
wavs bv which computer-mediated communication (M(, im-
pacts cancer care. (M( pro·ides a channel íor interpersonal
communication e.g.. email or chat,. and íor mass-mediated
communication e.g. web pages. online news,. Some íorms oí
(M( are interacti·e. and some are not. (M( can be one person
searching íor a particular piece oí written iníormation. or it can


be a group oí geographicallv distant persons coming together in
·irtual space.
1he continuum oí cancer care -írom pre·ention to sur-
·i·orship- is represented. enacted. and discussed e·erv dav
through computer-mediated communication. One oí the most
per·asi·e links between cancer communication and (M( is the
Internet.

1he Internet and Information about Cancer
At no other time has health iníormation been more accessible to
people than todav due to the ad·ent oí the Internet. 1he Inter-
net is an important channel íor pro·iders to communicate with
other pro·iders. a source íor social support íor patients. and as a
means íor health campaigns to reach indi·iduals around the
world. It has increased consumers` abilitv to shop íor pro·iders.
to shop íor treatment options. and to learn about complementa-
rv and alternati·e methods oí cancer care.
Suppose íor example that vou ha·e a health concern. but
vou are unsure whether or not vou need treatment. 1he íirst
thing vou might do is surí the Net to trv and íind iníormation
about vour svmptoms. lealth iníormation íound on the Inter-
net can be extremelv coníusing. and mav oííer a wide ·arietv oí
potential causes íor a particular set oí svmptoms. Based on what
vou read. there mav be cause íor alarm. but sometimes it is easv
to jump to inaccurate conclusions based on incorrect or con-
ílicting iníormation írom ·arious web sites.
1he realitv is that health issues are extremelv complex.
and the ·erv same bump. or pain. or ache. mav ha·e manv dií-


íerent meanings. lealth care pro·iders go to school íor vears
and vears to learn how to properlv diagnose patients` illnesses.
so a quick look at the Internet mav not be suííicient to get a
correct diagnosis. As a consumer. it is practicallv impossible to
properlv selí-diagnose a complex illness using onlv the Internet.
Iníormation acquired írom the Internet does add to a set oí
knowledge about a svmptom. but the translation oí that know-
ledge most oíten requires a trained proíessional. 1he Internet
can be helpíul íor gaining basic remedies íor basic health ques-
tions such as. low to treat a bee sting.` or \hat does poison
i·v look like·` More complex issues howe·er. such as svmptom
and treatments íor cancer. require more complex answers that
should be pro·ided bv a knowledgeable health care proíessional.
1he bottom line is that the Internet can oííer some good iníor-
mation to discuss with vour pro·ider. but it is not a substitute
íor qualitv health care.
Aíter looking íor iníormation about a condition on the
Internet. the next step is ·isiting a pro·ider. 1he Internet might
be used to íind a doctor. or to get directions and oííice iníorma-
tion. lealth care pro·iders e·en ad·ertise on the Internet. and
some ha·e elaborate web sites that market their ser·ices to pa-
tients. lealth care marketing is big business. so indi·idual phvsi-
cians. hospitals. and diagnostic centers market themsel·es on the
Internet.
Aíter choosing and ·isiting a doctor. patients oíten
search the Internet to ·eriív the iníormation thev recei·ed about
their condition. A cancer diagnosis can be shocking and scarv.
so it is ·erv common to seek out additional iníormation aíter


recei·ing diagnosis and treatment options. Some patients will
use the Internet to look up terms used bv their pro·ider. \hat is
a mastectomv·` \hat does a radiologist do· All oí these ques-
tions can be íound on the Internet.
1he Internet has re·olutionized the wav health consum-
ers seek out and use health iníormation about cancer. A recent
studv reported that among Internet users. as manv as 8 out oí 10
look íor health iníormation online. on topics including pre·en-
tion issues. diagnosis oí speciíic tvpes oí cancer. and traditional
and experimental treatment options.
1he wavs in which iníormation gained írom Internet
sources is used also ·aries. Sometimes the goal is to selí-
diagnose a health problem. while others times the goal is to íind
support íor iníormation recei·ed írom doctors or lo·ed ones.
1he Internet is sometimes the íirst source oí cancer iníorma-
tion. and sometimes it is used to ·alidate iníormation írom oth-
er sources. lor Internet users. the abilitv to seek out and re-
spond to iníormation about cancer through computer-mediated
communication has become an integral part oí all aspects oí
health communication.

Reaching Out: ´ociat ´vpport ava CMC

\ou Might lind Answers to the lollowing Ouestions on
the Internet
1he Internet oííers cancer patients and their íamilies a
great opportunitv to reach out to other people in the same situa-
tion. in chat rooms íocused on cancer therapv and treatment.


1here are se·eral beneíits to talking to people in chat rooms that
vou mav not íind when talking to people in vour e·ervdav liíe.
\ou can oíten íind people who ha·e the same svmptoms as vou
do. the same side eííects as vou do. and the same concerns and
íears vou do. \ou can e·en ask embarrassing or diííicult ques-
tions anonvmouslv without ha·ing to íeel awkward. or put
someone else in an awkward position. lere are a íew topic areas
vou might choose to discuss with people in internet chat rooms.
1his list is not exhausti·e. but it might help vou thin about the
tvpes oí questions vou would like to ask.

1. low should I expect to íeel during mv treatment·
2. \here are the best places near mv house to get sup-
plies like special bras. wigs. hospital beds etc·
3. Are there local agencies that can help me take care oí
mvselí while I am sick·
4. \hat Ií I want to hire a person to help clean mv
house or take care oí mv vard· Does anvone ha·e
suggestions·
5. I`m íeeling stressed. low ha·e others coped with the
emotional rollercoaster oí cancer therapv·
6. I think I might be depressed. but I don`t want to
mention it to mv doctor. \hat are the svmptoms oí
depression·


¯. low does cancer therapv aííect vour sex liíe· Are
there anv tricks to maintaining intimacv with mv
partner while I am sick·
8. I am caring íor mv lo·ed one who has cancer. but
sometimes I íeel I am in o·er mv head. \hen should
I turn to proíessional help·
9. Mv doctor told me mv cancer is terminal. \hat are
the legal matters I should be thinking about·
10. I know mv cancer is terminal but I still ha·e unre-
sol·ed issues with a íew important people in mv liíe.
low can I approach them to talk about mv íeelings
now that I know I am not going to li·e much longer·
11. low do I make mv íamilv íeel better about mv con-
dition· Mv main concern is letting them know I am
readv íor whate·er happens.
12. Mv doctor uses terms I don`t understand. Does anv-
one know what a certain word she used means·
In addition to being a source oí iníormation about can-
cer. the Internet pro·ides a mechanism íor social support íor
cancer patients and their íamilies. Selí-expression though written
communication can be beneíicial in se·eral wavs. lirst. (M(
support groups oííer the abilitv to express diííiculties oí uncer-
taintv. grieí. íeelings oí injustice. íear. and anger. 1here is a cer-
tain comíort in íinding others who share the same condition.
the same concerns. and the same struggles. (omputer-mediated
social support networks oííer patients the opportunitv to con-


nect o·er space and time with people thev mav ne·er meet íace-
to-íace. 1he relationships mav become ·erv close as the tvpes oí
iníormation shared mav be ·erv personal. 1he support recei·ed
is not based on social or íamilv obligation. but rather on a ge-
nuine desire to connect with others using technologv.
(omputer-mediated support groups are also easilv ac-
cessible íor Internet users. e·en when the patient is too sick or
tired to attend íace-to-íace support groups. Meetings held in
hospitals and other locations are onlv beneíicial when patients
can access them. 1he ease oí accessibilitv oí online support
groups íor Internet users is a major beneíit.


An increasing number oí health care pro·iders are choosing to
use electronic mail. or email. as a wav to connect with their pa-
tients. \hen a patient and pro·ider communicate through email.
there are se·eral important considerations to keep in mind. Pro-
·iders should take se·eral important steps to íoster ethical and
eííecti·e communication with patients. Patients should recog-
nize the beneíits and limitations oí email communication.
lirst. the cancer care pro·ider should take necessarv
steps to authenticate that the patient is in íact the person with
whom he or she is emailing. Although it sounds unlikelv. a íami-
lv member or emplover could potentiallv email a pro·ider íor
pri·ate patient iníormation. Authentication can be achie·ed bv
íilling out a consent íorm with a secure email address íor con-
tacting the pro·ider. 1his should occur beíore to the initiation
oí online communication with a patient. Iníormed consent bv


the patient should be established in ad·ance so the patient and
pro·ider both ha·e a clear understanding oí the tvpes oí iníor-
mation that should be con·eved through email. and when it
would be better to use other communication channels such as
íace-to-íace communication or telephone interactions.
Second. email correspondence between patients and
pro·iders should onlv occur in existing clinical relationships.
Because so much oí cancer care is highlv personal. it is essential
íor anv care pro·ider to know a patient`s medical historv. and
the speciíics oí their diagnosis and therapv. Lmail correspon-
dence with online doctors cannot pro·ider the personalized.
accurate iníormation that cancer patients and their íamilies relv
upon. lor this reason. online communication with pro·ider
should be limited to those pro·iders whom a patient has met
and been e·aluated bv in a clinical setting. Although the idea oí
using technologv to anonvmouslv Ask the Doctor` questions
o·er the internet can seem like a time-eííicient and cost-sa·ing
measure. these tvpes oí web sites and ser·ices should be re-
ser·ed íor more routine questions or concerns. (ancer patients
need coordinated care írom pro·iders who are íamiliar with the
speciíics oí their case. so online ad·ice írom pro·iders who ha·e
ne·er me the patient should be a·oided.
1hird. oítentimes pro·ider charge íees íor time spent
writing and responding to email messages írom patients. 1hese
íees should be made clear to the patient in ad·ance. and patients
should ha·e a íull understanding about whether the íees will be
considered allowable based on the health care plan to which the
patient belongs.


linallv. patients and pro·iders need to establish rules íor
acceptable use oí email. lor example. how long is a reasonable
amount oí time to expect to wait íor a replv· \hen should a
patient use the telephone instead oí emailing· \hen should a
patient go to the emergencv room instead oí emailing·
Doctors work long and irregular hours. so when thev do
ha·e time oíí it is uníair to expect them to answer routine ques-
tions sent ·ia email. Manv doctors ha·e email oííice hours`
during which patients can expect to send and recei·e messages
in a íew hours. Other times. pro·iders ha·e a 48 hour policv.
which states all messages will be responded to within a 48 hour
period. 1he main point is to make sure the expectations íor
email are lined out in ad·ance to a·oid miscommunication be-
cause oí the technologv used to con·ev a message.





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117




Chapter Eight


Cancer Communication Messages
Across the Lifespan


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

(ancer is ne·er an easv subject. but talking about cancer when
we are vounger with less exposure to the topic area brings on
diííerent con·ersations and understanding oí the disease and
how it plavs out when compared to talking about cancer with
older adults who tend to ha·e known someone who has been
diagnosed with cancer at the ·erv least and more likelv ha·e
learned a lot about cancer bv seeing a íriend or íamilv member
go through the cancer process in one wav or another. 1he can-
cer experience can be especiallv complicated and talking about
the cancer experience can also be extremelv delicate and com-
plex. 1his chapter looks at the wavs in which we talk and learn
about cancer within our íamilies. írom our íriends. as well as
írom health care pro·iders and how we then translate those
·arious health risk messages into making health decisions in our
own li·es. As such. this chapter íocuses on the role oí health
risk messages as we communicate about cancer across the liíes-
pan. 1hink about some oí the con·ersations vou listened to
when vou were a child sitting around the íamilv dinner table. As
vou think back. vou might recall Mom saving eat vour ·egeta-
bles` or vou need to eat three bites oí each beíore vou mav be
excused írom the table.` etc. lill in vour own con·ersation here
! 1he realitv is that some íamilies are more attuned to promoting
healthv beha·iors oí diet and exercise within the íamilv culture
than others. lor those oí us who ha·e experienced cancer with-
in our íamilies. we tend to be quite ·igilant in translating healthv
messages and beha·iors on to our children. íriends. and e·erv-
one around us in the most subtle sometimes not so subtle!,
wavs possible. lor instance. the íirst author`s íather died oí lung


cancer with 16 additional brain metastases, in 1998 at the voung
age oí 58. Although he had been smoke íree íor the last 10 vears
oí his liíe. he had indeed been a smoker írom the age oí 15 oíí
and on throughout most oí his adult liíe. Although the íirst au-
thor has ne·er been a smoker. she has alwavs been sensiti·e to
smoke in the air due to se·ere allergies. 1hus. e·en second hand
smoke has been a·oided whene·er possible. Persuasi·e health
messages and beha·iors about the risks oí smoking ha·e trans-
lated to her íamilv members oí all generations. lurther. health
risk messages related to diet. exercise. and sunscreen protection
ha·e also become more salient discussions at the dinner table.
shopping lists. time allotted íor exercise. and so íorth. 1hese
important health risk messages and beha·iors are being naturallv
integrated into íamilv liíe. which is a beneíit to the rest oí the
íamilv creating a íamilv culture oí healthv beha·iors. 1his is not
to sav that e·erv dav is the períect dav oí health beha·ior. but
the goal is to shiít the íamilv to more healthv beha·iors and
choices than not in an eííort to create embedded health beha-
·iors within our li·es. \e create embedded health beha·iors bv
talking about health. con·incing our íamilv and íriends to adopt
healthier beha·iors in ·arious aspects oí their li·es until such
health beha·iors become an embedded part oí e·ervdav liíe
across the liíespan. Sometimes genetics and íamilv culture work
together to be an agent íor pre·ention íor the rest oí the íamilv.
As we learn about healthier beha·iors. we want to share our
knowledge and capabilitv oí integrating such beha·iors into our
liíe bv helping others to see how thev can do it too!


Lmotion can plav a huge role in terms oí how it impacts
our cogniti·e message processing. low we process messages
and impact oí emotion and cognition. Message recei·ers can
ha·e irrele·ant thoughts when recei·ing a health message. In
such cases. the message recei·er thinks about entirelv diííerent
issues when recei·ing a message. Irrele·ant thoughts can take
the íorm oí I was thinking about grocerv shopping while mv
doctor was talking to me` or I am aíraid oí dving so I turned
mv thoughts to something more positi·e.` As Sparks` line oí
research consistentlv points out this is particularlv salient in the
cancer communication context where the topic is likelv to con-
jure up thoughts oí death. íear. or e·en recollections oí a loss oí
a lo·ed one. As such. as vou talk with vour íamilv and íriends
about a highlv emotionallv charged health topic such as cancer.
vou might take into consideration how to keep thoughts on task.
Risk message processing is actuallv a part oí our phvsi-
ologv. In other words. we are hard wired to think about risk in a
certain wav. (onsider what happens when vou see what vou
belie·e to be a snake on the ground. \our immediate reaction
mav be to mo·e quicklv. because vour brain tells vou to get
awav. or vou mav íreeze in íear. Our response to the snake is
dri·en bv our brain. and how we ·iew percei·ed risks. Because
at its core percei·ed risk is phvsiological. it is possible íor us to
look at expected patterns oí beha·ior related to risk. \e can
look at which messages create certain responses to risk.
(ommunication about risk is important in the context oí
cancer íor two reasons. lirst. in terms oí pre·ention oí cancer. it
is essential to think about which tvpes oí messages help us to


change riskv health beha·iors i.e. smoking. sunscreen protec-
tion. or getting a sexual partner to engage in protected sex beha-
·iors,. Second. in term oí cancer treatment or therapv. patients
and their íamilies consider the risks associate with ·arious
treatments in planning íor the cancer care process. 1here are a
number oí health beha·ior theories that explain how and whv
we engage in riskv health beha·iors or not,. Such theories em-
phasize things like how we sort through or decide on the costs
and beneíits oí engaging in certain riskv health beha·iors e.g..
smoking cessation. condom use. sunscreen protection. seat belt
use. proper diet íull oí nutritional choices. implementing consis-
tent exercise routines. etc., as well as what we consider to be
normal healthv beha·ior íor such decisions and whether or not
we ha·e the capabilitv oí changing our beha·iors in our current
en·ironments.
At least one-halí oí all deaths can be attributed to pre-
·entable beha·ioral and social íactors. such as poor diets. smok-
ing. alcohol use. and poor en·ironmental health conditions.
1hese numbers are in line with similar statistics írom other íirst
world nations. Beha·iors associated with increased risk íor can-
cers ha·e been consistentlv linked to mortalitv rates. but oíten-
times people do not consider the potentiallv hazardous out-
comes oí such beha·iors. In other words. when a woman perce-
i·es that smoking is the norm because all her íriends smoke. and
she likes the wav she looks while holding a cigarette. she will not
ha·e intentions to quit. so she will not quit smoking. Just think
about it - sometimes it is easier to take a less scarv path than it
is to íace changing unhealthv beha·iors. Some people choose


not to change riskv beha·iors because thev are just too aíraid to
trv. lear oí íailure can be a primarv reason íor not starting a diet
or not quitting smoking. \hen a man is more scared oí cancer
than he is scared oí íacing the problem oí his risk beha·ior. he
is more likelv to change that riskv beha·ior. \hen a woman is
more scared cer·ical cancer than she is scared oí a pel·ic exam.
she is more likelv to get a pel·ic exam. Ií vou know someone
who will not change riskv health beha·iors. think about whether
thev are scared oí the change. or scared oí íailing to change.
1his can help vou communicate eííecti·elv to make that person
íeel more capable and less íearíul oí change.
In terms oí risks associated with cancer treatment. it is
easv to see whv we will put up with nausea. hair loss. and end-
less needles and tests. Our íear oí cancer outweighs the íear
associated with treatment. 1here are people who do not íeel this
wav. howe·er. Although there are manv others íactors hat can
iníluence therapv decisions. some people choose not to undergo
certain therapies because thev íear the treatment itselí.
Importantlv. researchers ha·e acknowledged the impor-
tance oí manipulating persuasi·e messages to induce moti·ation
in recei·ers to increase the likelihood oí svstematic processing.
\et. when we trv to con·ince our íriend or lo·ed one to change
something or do engage in a diííerent health beha·ior we oíten
get resistance. lor instance. trving to get vour great aunt to stop
smoking is not an easv task when she has been smoking her
entire liíe. Or. persuading vour aging íather to consistentlv take
his prescription drugs to control íor his rising blood pressure is
not an easv dailv con·ersation to ha·e. Similarlv. trving to get


vour children to eat their íruits and ·eggies instead oí junk
íood..not easv! 1he point here is that children ha·e unique
barriers that will aííect their likelihood oí processing in a diííer-
ent wav than middle aged or older adults do and we need to
ha·e this basic understanding as we talk with them about their
health beha·iors!
In other words. the wavs in which we írame messages
impact the wavs people process the messages and make subse-
quent health risk decisions based on such messages. 1hus. the
wav we present messages oíten impacts the decisions people
make. 1his can ha·e a huge impact on one`s health experience.
Once vou understand this concept vou will be able to put it into
practice in vour own liíe and the li·es oí those vou care about.
In recent vears. health communication scholars and
health practitioners ha·e utilized prospect theorv bv using mes-
sage íraming to understand the communication in·ol·ed in riskv
decisions. 1he landmark essavs oí Amos 1·erskv and Daniel
Kahneman put íorth prospect theorv. suggesting that indi·iduals
will react diííerentiallv to iníormation presented as gains or
losses. People encode iníormation and make choices in terms oí
potential gains or potential losses. 1hus. íactuallv equi·alent
iníormation can be presented to people diííerentlv so thev en-
code it as either a gain or a loss íraming,. A íraming eííect is
demonstrated bv constructing two transparentlv equi·alent ·er-
sions oí a gi·en problem. which ne·ertheless vield predictablv
diííerent choices. 1he standard example oí a íraming problem is
the li·es sa·ed. li·es lost` question. which oííers a choice be-
tween two public-health programs proposed to deal with an


epidemic that is threatening 600 li·es. One program will sa·e
200 li·es: the other has a 1´3 chance oí sa·ing all 600 li·es and a
2´3 chance oí sa·ing none. In this ·ersion. people preíer the
program that will sa·e 200 li·es. In the second ·ersion. one pro-
gram will result in 400 deaths: the other has a 2´3 chance oí 600
deaths and a 1´3 chance oí no deaths. In this íormulation. most
people preíer the gamble. Oí course. these íormulations present
identical situations. 1he onlv diííerence is that in the íirst íor-
mulation. the problem is íramed in terms oí li·es .area and in
the second. the situation is íramed as a matter oí li·es to.t. 1hus.
the message írame that a decision-maker adopts is controlled
partlv bv tbe torvvtatiov ot tbe probtev and partlv bv the norms.
habits. and personal characteristics oí the decision-maker. In
essence. indi·iduals tend to select some aspects oí a percei·ed
realitv and make them more salient during interaction.
Nearlv all health-related iníormation can be construed in
terms oí either gains beneíits, or losses costs,. But which
írame works better· 1he answer depends on whether the target
health beha·ior is an illness-detection beha·ior or an illness pro-
tection beha·ior. Detection beha·iors tvpicallv in·ol·e iníorma-
tion-seeking and a certain set oí actions that are uncertain in
nature but can be detected e.g.. prostate exam. mammographv.
mole. breast selí-examinations´lump, i.e.. \ou mav íind some-
thing wrong,. Protection beha·iors e.g.. using sunscreen. seat-
belts, tvpicallv lead to relati·elv certain outcomes i.e.. \ou
maintain vour current healthv status,.
Prospect theorv predicts that to..·travea iníormation
leads to preíerence íor vvcertaivty. whereas gaiv·travea iníorma-


tion leads to preíerence íor certaivty. Research íindings indicate
that to..·travea messages were eííecti·e in promoting mammo-
graphv. breast selí-examinations. and lIV testing. Caiv·travea
messages were eííecti·e in promoting iníant car restraints. phvs-
ical exercise. smoking cessation. and sunscreen.
1he message-íraming component oí prospect theorv has
been utilized in health risk studies dealing with the uncertaintv
and risks in·ol·ed in disease detection. Research suggests that
íemale participants were more con·inced to conduct breast selí-
examinations aíter being exposed to negati·elv íramed messages
than positi·elv íramed messages. Negati·elv íramed messages
ha·e also been íound to be more eííecti·e in persuading persons
to engage in detection beha·iors. such as seeking health iníor-
mation or disco·ering a lump or mole. \hv should vou care
about positi·elv and negati·elv íramed messages· Iníormation is
power. \ou mav be able to use some persuasi·e techniques de-
scribed here as vou care íor vour lo·ed ones whether in a stage
oí cancer pre·ention. detection. diagnosis. treatment. sur·i·or-
ship. or possiblv end-oí-liíe. As such. vou mav ha·e better
health outcomes and´or health care experiences as vou na·igate
the health care team and svstem.
Prospect theorv has shown that message íeatures aííect
the wavs health and illnesses are percei·ed. Another íocus oí
health communication research has been on exploring the wavs
in which communication aííects peoples` attitudes. (an a change
in attitude mo·e people írom tbiv/ivg about a pre·ention or
detection beha·ior to activg ov tbeir betiet.· \hat causes indi·idu-
als to change their health-related beha·ior· low do the ac-


counts patients and iníormal caregi·ers present about a health
condition impact their management oí that condition· Such
questions are at the heart oí a signiíicant amount oí health
communication research.
\ou mav still be thinking. \hv is this line oí health
communication research important to me·` \e think it is ex-
tremelv important that vou understand how persuasi·e health
iníormation and messages are presented can make a .igviticavt
diííerence in how that iníormation is processed. recei·ed. and
acted upon and tbi. cav greatty ivpact yovr beattb! \e are trving to
con·ev how important it is íor vou to be a critical health care
consumer oí iníormation and messages. because doing so can
literallv sa·e vour liíe or the liíe oí vour lo·ed one. Such impor-
tant liíe changing messages are deli·ered and processed in dií-
íerent wavs. bv people oí all ages to people oí diííerent ages at
diííerent times across the liíespan as well as in diííerent con-
texts.

Communicating About Cancer Across the Lifespan
O·er the next se·eral decades. we will see a substantial increase
in the older adult population in se·eral countries. including
Spain. Italv. and the United States. In Spain. bv 2050 it is ex-
pected that 35.6° oí the population will be o·er the age oí 65.
\hile age bv itselí is not necessarilv predicti·e oí illness. health
problems do tend to occur more írequentlv as we age. A num-
ber oí communication-based problems continue to plague our
healthcare svstem when it comes to pro·iding care to older pa-
tients. 1his chapter builds on aging research bv íocusing on an


important and growing area oí health communication research:
health communication across the liíe span. It íocuses on issues
associated with aging that can lead to problems íor older adults
in terms oí recei·ing qualitv healthcare.
In order to eííecti·elv communicate during cancer care.
it is crucial that we íirst begin to understand that just as not all
cancer diagnoses are alike -not all patients are alike. Indi·iduals
oí similar chronological age oíten undergo ·erv diííerent liíe-
experiences. 1hese diííerent experiences can iníluence commu-
nication in relationships. One liíe-experience that can diííer
between indi·iduals oí the same chronological age is the pres-
ence or absence oí a cancer diagnosis. 1he impact oí such a
diagnosis. and subsequent interactions related to the diagnosis.
can be remarkablv o·erwhelming íor older adults as well as íor
those caring íor the older adult patient. Although manv older
adults ha·e known others who ha·e been diagnosed with can-
cer. more oíten than not these indi·iduals ha·e little to no expe-
rience with the cancer culture and anv norms associated with
this unknown world. 1he communication surrounding each
diagnosis íor older adult patients must begin to be tailored to
account íor such complexities.
As we ha·e discussed in pre·ious chapters. the new cul-
tural world oí cancer is oíten burdened with new identities. new
unknown relationships. and no·el terminologv. 1he íocus oí
this chapter is to íocus on an emerging and crucial area oí can-
cer communication science that íocuses on the complexities and
changes íaced at diííering points across the liíespan. 1he subtle
complexities oí age related communication barriers oíten impact


aging patients diagnosed with cancer. In order to pro·ide the
best care íor aging patients. we must íirst understand the diííer-
ences patients experience when diagnosed with cancer at diííer-
ent points across the liíespan with a particular íocus on the
unique issues that manv older adults íace and how these barriers
can get in the wav oí older adult preíerences íor and abilitv to
process messages. which could potentiallv iníluence health out-
comes.
Older adults are diagnosed with cancer more than anv
other segment oí the population. 1he \orld lealth organiza-
tion predicts a sharp increase in the number oí cases oí cancer -
írom 10 million new cases globallv in 2000. to 15 million in 2020
- is mainlv due to a steadv increase in the aging populations in
both de·eloped and de·eloping countries. the continued pre·a-
lence oí smoking. and in unhealthv liíestvles including poor di-
ets. At this time more than anv other. it is crucial that we begin
to understand how to communicate with aging cancer patients
across the continuum oí cancer care írom diagnosis to sur·i·or-
ship. 1hus. the studv oí communication practices during cancer
care íor the aging patient is critical íor impro·ing geriatric care
as well as to consider the li·es oí those aííected bv the disease.
(onsequentlv. the unique aspects oí cancer care íor the aging
patient will become increasinglv important.
It should be e·ident that age-related phvsiological
changes. cogniti·e changes. and liíe experiences oí older indi-
·iduals tend to complicate the wavs health care pro·iders and
íamilv members care íor the aging patient who has been diag-
nosed with cancer. lrom a perspecti·e grounded in liíe span


de·elopmental communication. understanding con·ersational
barriers that are unique to patients diagnosed at diííerent points
in liíe írom childhood to old age are discussed. Once such con-
·ersational barriers are addressed and better understood in
terms oí adaptation to slow. but incremental deíicits across the
liíe span. all oí us in·ol·ed in caring íor cancer patients will ha·e
more clearlv deíined wavs oí constructing messages that patients
will likelv comprehend and process. which likelv contribute to
better health outcomes. (ancer messages must be designed spe-
ciíicallv íor each population.

Challenges in Communicating With Older Adults
\e argue ·ia ´ociat íeattb )beory that an indi·idual`s abilitv to
create and maintain satisíaction with interactions and message
exchanges in ·arious relationships ultimatelv aííects one`s
health. Research suggests that indi·iduals without close interper-
sonal interactions and relationships are two times as likelv to die
than those with strong interpersonal ties. 1hus. íurther under-
standing oí how our interactions plav out in the construction
and processing oí such messages across the communication
continuum e.g.. interpersonal. small group. organizational. pub-
lic. mass, is another element that mav contribute greatlv to in-
creased health outcomes íor aging patients.
1he importance oí understanding the complexities un-
derlving communicating with the aging patient diagnosed with
cancer works in another important wav. (ommunication not
onlv plavs a crucial role in assessing a patient`s mental and phvs-
ical health. but. additionallv. aíter thev are diagnosed with an


illness such as cancer. their communicati·e relationships seem to
iníluence how thev will get well. Due to the complexities oí the
health care pro·ider-older adult patient relationship. barriers
that older adults and their partners and caregi·ers íace in con-
·ersation and some implications oí such barriers must be better
understood as well as the connection to the wavs in which older
adults adapt to deíicits acquired across the liíe span.

Challenge J: Aging Characteristics
lor decades. researchers ha·e recognized that manv oí the de-
clining characteristics associated with aging are tvpicallv linked
to distinct elements within each oí our li·es and not necessarilv
a íunction oí growing old. Primarv characteristics oí aging in-
clude de·elopmental changes that result solelv írom the process
oí aging i.e. wrinkles,. whereas secondarv characteristics are
changes that occur due to e·ents that take place during the liíe
span e.g.. poor diet,. (ommunication barriers in cancer care íor
the aging patient can be caused bv both primarv and secondarv
characteristics oí aging.

Challenge 2: Aging and loss of eye sight
Oíten the íirst signs oí evesight decline occur around the age oí
40. 1his slow process oí ·ision loss is due to a thickening oí the
crvstalline lenses oí the eve. along with a decrease in elasticitv oí
the lenses oí the eve. Manv indi·iduals initial coping strategies
include holding printed material íarther awav írom the eves. As
we reach the age oí 50. small objects and details become more
diííicult resulting in an increased need íor reading glasses. Bv the


age oí ¯0. approximatelv ¯0° do not ha·e normal ·ision e·en
with correction. Such losses due to aging also begin to aííect
e·ervdav acti·ities.

Challenge 3: Aging and Loss of Hearing
1he aging process also impacts our abilitv to hear and process
aural iníormation. particularlv higher írequencv sounds. Presbv-
cusis is the term used to describe the hearing loss associated
with aging. learing problems increase considerablv aíter the age
oí 45. whereas 20° oí indi·iduals o·er the age oí ¯5 experience
mild hearing loss. Oíten the declining abilitv to hear mixed with
a decline in coníidence about hearing result in more requests íor
repetition oí iníormation or an a·oidance oí con·ersations. Ll-
derlv indi·iduals experiencing hearing loss will trv to o·ercom-
pensate ·ia a number oí strategies including an attempt to íill in
the semantic and svntactic gaps whene·er possible. Oí course.
as with anv con·ersational snaíu. inappropriate íillers can create
an uncomíortable con·ersation. \hen con·ersations do not
íollow con·entional norms. the wrong words bring about unin-
tended consequences. Such sensorv diííiculties contribute to
decreases in coníidence with one`s con·ersational abilities.
which in turn mav contribute to problems in other areas such as
message processing or particular iníormation seeking strategies
íor older adults. Message exchange and understanding is likelv
to be impacted bv such declines acquired across one`s liíe span.
particularlv when it comes to the increase in time it takes íor
older adults to encode and decode messages.



Challenge 4: Aging and Messages
\ord retrie·al. name recall. and planning what to sav during a
con·ersation can also present problems along with delavs in
processing all oí which can impact the tvpical con·ersational
ílow. iníormation gathering. and decision-making. Such diííicul-
ties oíten lead interactants to begin to question the older speak-
er`s competence. which can lead to stereotvping resulting in a
host oí problems íor the aging patient in terms oí obtaining the
best cancer iníormation. decision-making and o·erall cancer
care.

Challenge 5: Aging and Cognitive Iunction
Research indicates that some dimensions oí intelligence slightlv
decrease as we age. particularlv íor those o·er the age oí ¯0.
howe·er some e·idence re·eals that some oí the cogniti·e de-
cline related to aging can be o·ercompensated íor with mental
and phvsical acti·itv. Older adults írequentlv ha·e been íound to
ha·e a more diííicult time in making iníerences írom iníorma-
tion obtained írom an interaction than vounger adults. which
leads people to belie·e that the older adult is not getting the
point oí the con·ersation or mav be coníused in some wav.
L·ervdav problem sol·ing can also be a problem íor
older adults simplv because the strategies emploved diííer írom
those used bv vounger adults. Nussbaum and colleagues íurther
state that such diííerences are shown on declarati·e i.e.. search-
ing íor the iníormation, and procedural i.e.. using prior expe-
riential knowledge, le·els. On the declarati·e le·el. older adults
can siít through ·ast amounts oí iníormation and pull out the


rele·ant pieces oí iníormation necessarv íor choosing the best
option a·ailable. whereas vounger adults tend to act more like
no·ices bv searching íor extensi·e iníormation. On the proce-
dural le·el oí problem sol·ing. older adults relv on well-
established procedural strategies íor obtaining solutions to the
problem. which mav not adapt to current societal needs and
wavs oí li·ing. Poor problem sol·ing mav emerge when old
skills are applied to newer problems. thus older adults mav just
need some retooling íor contemporarv societv e.g. computer.
text messaging. etc.,

Challenge 6: Aging and Memory
Similar to the research on aging and cogniti·e abilities. Baltes
and colleagues research studving the iníluence oí aging on
memorv indicates memorv to be a multidimensional construct.
Sensorv. short-term. and long-term memorv and all are diííeren-
tiallv impacted bv the aging process.
´ev.ory vevory is deíined as one`s abilitv to remember an
image or memorv oí stimuli within a íraction oí a second aíter
exposure. ´bort·terv vevory is deíined as the abilitv to remember
an image or memorv oí stimuli within seconds or minutes aíter
exposure and tends to slowlv decline with age. (on·ersational
diííiculties tend to arise íor older adults because oí problems
with simultaneouslv processing and storing iníormation. In
terms oí short-term memorv recall oí iníormation. vounger
adults ha·e an ad·antage o·er older adults. íovg·terv vevory is
comprised oí speciíic experiences or episodic memorv. know-
ledge or semantic memorv. and procedural memorv. It takes


more time íor older adults to retrie·e iníormation írom memo-
rv. howe·er. older adults ha·e been íound to ha·e better narra-
ti·e recall and tend to remember stories in more accurate detail
than their vounger counterparts. Older adults and vounger
adults ha·e diííerent problem-sol·ing strategies and social-
knowledge scripts because thev do not share the same schema.
Understanding such diííerences is the íirst step toward reducing
misunderstandings and miscommunication oí health messages.

Challenge 7: Aging and Relationships
1he nature and management oí cancer íor older adults depends
upon not onlv biological processes. but psvchological and social
processes as well. A cancer diagnosis will be quite disrupti·e to
the patient`s relational world. Understanding how íamilv and
íriend relationships íunction in old age can help us to predict
and explain the process oí an older indi·idual`s successíul adap-
tation to li·ing with cancer. Research consistentlv supports the
notion that interpersonal communication is a central component
in terms oí understanding how to successíullv adapt to and eí-
íecti·elv manage the complexities in·ol·ed in caring íor aging
patients. As we described in (hapter One. social relationships
and processes contribute to our health in positi·e and negati·e
wavs. Research suggests that those who age successíullv tend to
reduce our o·erall social interactions while maintaining those
relationships that pro·ide the most emotional support. 1hus. as
we suggested earlier with our description oí ´ociat íeattb )beory.
relationships can greatlv impact one`s health. particularlv with an
acute diagnosis oí manv cancers and the subsequent care that


mav be in·ol·ed. Understanding how íamilv and íriend relation-
ships íunction in old age can help us to predict and explain the
process oí an older indi·idual`s successíul adaptation to li·ing
with cancer.
(ommunication not onlv plavs a crucial role in assessing
a patient`s mental and phvsical health. but. additionallv. aíter
thev are diagnosed with an illness such as cancer. their commu-
nicati·e relationships seem to iníluence how thev will get well.
Research indicates that when breaking bad news it is important
to ha·e built a positi·e relationship with the patient bv coordi-
nating and distinguishing content and relational aspects oí
communication to both iníorm people about cancer and cancer
treatment. without coníusing or upsetting them. despite the
challenges oí íunctioning within a managed care svstem or
health care svstem that hinders eííecti·e communication and
relationship building.

Challenge 8: Aging and Language
Research has re·ealed that in the U.S. older adults are percei·ed
negati·elv and oíten recei·e negati·e remarks or experiences
írom people in vounger age groups. lowe·er. in lispanic cul-
tures. older adults are treated with respect and generallv ha·e
more authoritv. Older adults in countries like (hina and Korea
abide show respect íor their elder or íilial pietv where children
oí adults take care oí them in old age. (onsequences oí showing
a lack oí respect toward elders is oíten ·iewed as disrupti·e to
cultural and íamilv svstems. which can greatlv impact health
outcomes. Older (hinese men and women immigrating to the


United States are oíten íorced to íend íor themsel·es as their
íamilies become acculturated to American customs. Research
has íound that people sometimes approximate their beha·ior to
accommodate toward a stereotvpe that thev hold about another
person. meaning thev mo·e toward a preconcei·ed notion or
stereotvpe oí how a particular person looks or is rather than
accommodating íor the indi·idual`s actual beha·ior. lor exam-
ple. a doctor treating a cancer patient írom a diííerent culture
mav speak more slowlv or more loudlv because he or she mav
assume that the íoreigner will ha·e trouble understanding them.
Similarlv. research has indicated that the context in which older
adults are encountered is the strongest indicator íor how s´he
will be recei·ed. lor instance. encountering an older person in a
hospital or nursing home leads to assumptions oí impairment
associated with negati·e stereotvping. but encountering the
same person in a ·ibrant business setting pro·ides an image oí a
competent person and leads to positi·e stereotvping.
lealth care pro·iders mav encounter diííiculties during
cross-cultural con·ersations due to language barriers. Stereo-
tvpes can also inhibit openness among patients and pro·iders
when thev ·iew their patients diííering cultural belieís or ·alues
about illness and treatments as iníerior to their own. As
touched upon in our chapter on culture. indi·iduals írequentlv
seek out health care pro·iders who share similar cultural back-
grounds as their own. with the belieí that thev share the same
·alues. or thev mav commonlv relv on íamilv members to pro-
·ide care. In other words. people most oíten seek out similar
others íor health iníormation.


Communicating About Cancer with Children

As with older adults. communicating with children about a can-
cer diagnosis can be an emotional con·ersation. 1hese con·ersa-
tions can also howe·er be an opportunitv íor children to learn
about the bodv. cancer. and the power oí medicine. and oí vour
lo·e íor them. As in e·erv situation. children want to know that
thev are and will be lo·ed throughout the cancer care process.
Sometimes a parent is the person with cancer. sometimes it is a
grandparent or close relati·e. Regardless oí who has cancer.
there are se·eral wavs to help children íeel saíe and secure aíter
the cancer diagnosis oí a lo·ed one. 1he next section outlines
some things to consider when communicating with children
about cancer.

Challenge J: Audience Analysis
1he íirst step in communicating with children about cancer is to
analvze the audience. \here is the child in terms oí his or her
emotional growth. intellectual abilitv. and age· (hronological
age is one helpíul predictor oí how the child will respond. but
emotional growth and de·elopmental maturitv are also kevs
things to consider. lor help with vounger children. some experts
recommend using props such as puppets. books. or stuííed an-
imals. Older children will ha·e a much clearer understanding oí
the meaning oí cancer` but do not assume that thev íullv un-
derstand the complexitv oí the disease. (hildren oí all ages need
speciíic but tailored iníormation to help them understand the
situation oí their lo·ed one.


Analvzing the audience also means considering the best
word or set oí words to use to describe the situation. 1hinking
about the best words to use will help build vour coníidence be-
cause vou will be able to rehearse vour initial statements in vour
head beíore vou speak with the child. 1hat is not to sav vou
ha·e to memorize the whole con·ersation in ad·ance - just like
anv con·ersation. vou want to let it e·ol·e naturallv. 1here is
nothing worse than trving to stav on a script when vou are talk-
ing to a child. 1he most comíortable approach mav be íor both
vou to let the questions and answers occur spontaneouslv. One
wav vou can prepare íor the con·ersation is to think oí the kev
ideas. or main points. íor the talk. \hat iníormation do vou
want to get across· \hat are the simplest terms vou can use to
con·ev that iníormation·
\hen vou think about choosing words to use. vou ha·e
to remember there is a diííerence between íraming things in a
positi·e light. and lving. Lving can be ·erv damaging and hurtíul
to children. especiallv ií thev íind out írom other sources that
what vou said is not true. 1rv to be positi·e. but honest. A·oid
words that ha·e to do with the patient the cost oí care. the
tvpes oí medications etc, and íocus on words that help the child
understand cancer in simple terms. Sometimes it is helpíul to
pro·ide examples and stories that children can relate to. lor
example. remember what happens to the water vou jump in and
it makes a big splash· 1here are wa·es that splash in the
pool´bathtub´etc. It is like vou ha·e something mo·ing around
inside oí vou and sometimes it can splash out and sometimes it
cannot. Oí course. the kev is to adapt and tailor the message to


each indi·idual child and his or her unique personalitv. interests.
experiences. In most cases using straightíorward. honest lan-
guage helps make communicating with children easier and more
successíul.

Challenge 2: Relationship Characteristics
1he second main issue to consider is the child`s relationship
with the person who has cancer. 1his will help vou prepare íor
potential questions the child might ask as vou discuss the illness.
\ill we still be able to plav ball·` \ill he still be at mv school
plav·` Sometimes children think oí illness in terms oí how it will
aííect their own liíe and their own routine. 1his is another place
where using a positi·e. but honest írame mav come in handv.
Lach relationship has its own unique dvnamics and its
own challenges to think about when talking to children about
cancer. Does the person li·e geographicallv close. or íar awav·
low will the cancer treatment protocol impact ·isitation· Does
the patient ha·e pets· (hildren are sometimes concerned about
who will care íor the pet during treatment.

Challenge 3: Listening to Children 1alk about Cancer
linallv. we ha·e spent a whole book íocusing on talking about
cancer but good communication in·ol·es both speaking and
listening. Although we tend to íocus much more on what we
will sav than what we hear. listening is one oí the best tools to
use in vour con·ersations with children. Instead oí telling them
how to íeel. ask them how thev íeel. \hen vou ha·e gi·en an
honest basic explanation oí the cancer to the child. just stop


talking. \ait íor at least se·eral seconds this can seem like íor-
e·er in diííicult situations. but it will gi·e the child time to digest
the iníormation and respond. All too oíten. as adults we íorget
to listen to children. \e know how diííicult it can be because
we each ha·e three children li·ing at home!
(hildren will ask what thev need to know. 1heir ques-
tions will gi·e vou clues about what to sav or not sav, next.
(hildren can be ·erv direct bv saving. Are vou going to die·` or
thev can shiít topics to something more comíortable such as.
(an I go outside now·` Be readv to respond to the questions
as thev occur. Listening also means waiting íor the right time to
bring up the topic when the child has had time to think about
the initial con·ersation. Additional questions or concerns will
come up o·er time. In the end. it is a general rule that commu-
nicating about cancer with children means reassuring the child
about the known. and being honest about the unknown.
Although older adults and children are two distinctlv dií-
íerent groups. thev both present speciíic challenges íor commu-
nicating about cancer. 1hese are se·eral good web sites that gi·e
speciíic iníormation about both oí these topics. 1he Internet
can be a good source íor tips on communicating with indi·idu-
als across the liíespan such as children or older adults.

141



Epilogue


\e wrote this book in an eííort to make vou a more eííecti·e
communicator when talking about cancer. \e hope vou ha·e
learned a little bit about how to better communicate about can-
cer with ·arious important people in vour liíe including vour
health care pro·iders. íriends. and íamilv members. As stated
earlier in our book. communication about cancer in·ol·es decid-
ing which questions to ask. where to get reliable iníormation.
and how or when to share the diagnosis with others. Our pur-
pose in writing this book was to help those oí vou li·ing with
cancer to understand better wavs oí íostering emotional support
and open communication to help vou and vour lo·ed ones
through the cancer maze and as a result li·e vour ·erv best and
healthiest li·es. \e attempted to shed light on how communica-
tion among patients. pro·iders. íamilv members. and mediated
sources can enhance the diííicult process oí cancer care.
\e lo·e studving and conducting research studies in the
areas oí health and risk communication and continue to lo·e it
more e·erv vear. because we get to talk with people like vou
who are either li·ing with cancer or who ha·e been impacted bv
cancer. \ou show us courage and determination that we rarelv
see in our world oí academe and íor that we are trulv grateíul.
\ou are the reason we continue to bring our research ideas and
results to the classroom and bevond -because vou show us how


important our work can be and how it can trulv help people to
make better health decisions and li·e better and healthier li·es.
\e sincerelv hope that aíter reading )at/ivg Cavcer. vou
are more iníormed than vou were beíore and that as a result vou
are better equipped to take action in e·erv health related choice
vou make in vour dailv liíe. \e also hope that vou ha·e learned
how to better obtain the iníormation vou are looking íor. how
to better na·igate the multiíaceted and coníusing interactions
vou will encounter in ·arious health care svstems. low vou ask
questions and íollow-up with íurther questions to each and
e·erv member oí the health care team. how vou educate vour-
selí. how vou explain íacts and emotions. and how vou lead each
member oí vour health care team will make a diííerence in vour
cancer experience. )at/ivg cavcer helps each and e·erv one oí us
to gain a better understanding oí cancer itselí and how commu-
nication. iníormation. and subsequent iníormed decision-
making can indeed contribute to better health outcomes íor all
in·ol·ed. (ommunication plavs a huge role in cancer pre·en-
tion. but can also help us with important health decisions we
make beíore. during. and aíter a cancer diagnosis. As discussed
earlier. vou will likelv come across some roadblocks during vour
cancer care experience. howe·er vou are more iníormed and
better equipped with )at/ivg Cavcer bv vour side and please con-
tact us anvtime ií vou ha·e anv additional questions íor us!
\hile we would lo·e to take all the credit íor this book.
we had some help along the wav! lirst oí all. we extend sincere
thanks and acknowledgement to our guru. mentor. and íriend
Dr. lowie Giles who is the series editor. \ithout lowie bv our


side this book would not ha·e been possible. \e are trulv grate-
íul íor this opportunitv. Grazie Mille lowie! Second. we ac-
knowledge and send our warm wishes and thanks to Bernat
Montagut oí Lditorial Aresta íor pa·ing the wav to make this
happen. 1hird. we thank our íamilv and íriends and the numer-
ous colleagues. students. patients. caregi·ers. and research ·o-
lunteers o·er the vears íor their insights. thoughts. and steadíast
courage to press on toward the goal set beíore them. \e send
heartíelt thanks to all who ha·e crossed our paths o·er the vears
helping to make our dreams come true -the dream to contribute
something important that will help people in some small wav.
\e wish vou the ·erv best in realizing vour dreams. goals. de-
sires. and abilitv to li·e vour ·erv best liíe possible.
\e hope we ha·e gi·en vou a íew communicati·e tools
so vou can get through vour health care journev in the best wav
possible. Use the ·arious communicati·e strategies and ap-
proaches acquired bv reading )at/ivg Cavcer. and vour own can-
cer care experiences won`t be as dreadíul as manv oí the stories
we ha·e described. Keep asking questions. seeking credible in-
íormation. choosing healthv and supporti·e relationships. and
talk to e·ervone possible until vou get the answers vou need.
Ne·er take no` íor an answer. Keep the íaith! \ou are in our
thoughts and pravers.

 
145

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

Among the books to follow in this Series:

´A World of Languages¨ bv John Ldwards t´t íravci. `arier |.)
´Communication and intimacy in older adulthood¨ Jon l. Nussbaum.
Michelle Miller-Dav. & (arla lisher tPevv ´tate |.. |´.)
´Children and the media¨ bv Karen Riddle t|. ot !i.cov.iv·Maai.ov) &
Lmilv Mover-Gusé tObio ´tate |.. |´.)
´I Like You, Love You, Hate You: Negotiating Intimate Interpersonal
Relationships ¨ bv Marv \iemann Santa Barbara (itv (ollege,
´Prejudice, discrimination, and intergroup communication¨ bv Richard
Bourhis t| ot Movtreat. Cavaaa)
´Ability speaks. Communicating with disabilities¨ bv Lllen B. Rvan and
Karen Bannister tMcMa.ter |.. Cavaaa)
´Sports communication and the media¨ Andrew Billings tCtev.ov |..
|´.)
"How did I get talked into that?" Persuasion, psychology, and cul-
ture¨ Kristine litch t| ot íora. |´.)
´Ageism at work: 1he role of language in a changing workplace¨ Ro-
bert M. Mc(ann t| ot ´ovtberv Catitorvia. |´.)
Small acts of living: Violence, resistance and the power of language¨
Linda (oates & Allan \ade tO/egavav Cottege. Cavaaa)
Crisis and Lmergency Risk Communication: J0 best practices for
improving preparation and response` Matt Seeger & 1im Sel-
now t!ayve ´tate |.. |´.)
´1he negative side of positive thinking¨ Ann Da·idson tMova.b |.. .v.·
tratia)
Children being seen and heard: 1he roles of youth in their immigrant
families' adaptation` Vikk Katz t|. ot ´ovtberv Catitorvia. |´.)


´Bullying: Contexts, consequences, and control¨ Maili Porhola t¡yra./y·
ta |.. íivtava) & 1errv A. Kinnev t!ayve ´tate |.. |´.)