More Related Content Similar to Final internship report Tugba Aydin-3 Similar to Final internship report Tugba Aydin-3 (20) 2. 2
I N T E R N S H I P ) R E P O R T ) !
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!
Prepared!for:!! Sint!Lucas!Andreas!hospital!in!Amsterdam!
Prepared!by:!!! BSc!Tuğba!Aydın,!2007991!
Student:!! Master!Management,!Policy!Analysis!and!Entrepreneurship!in!
Health!and!Life!Sciences!
Specialization:!! Management!and!entrepreneurship!
Start!date:! ! February!2015!
Version:! ! Final!research!report,!3th!of!July!2015!
!
!
!
!
Supervisors:!
Drs.!Elsbeth!ten!Kate!
Sint!Lucas!Andreas!hospital!!
Jan!Tooropstraat!164,!1061!AE!Amsterdam!
!
!
Dr.!T.J.!Schuitmaker!
Faculty!of!Earth!and!Life!Sciences,!VU!
De!Boelelaan!1081!
1081!HV!Amsterdam!
!
!
!
!
!
“Not everything that can be counted counts,
and not everything that counts can be
counted“
Albert Einstein
3. 3
Summary)
Introduction.+ Shared! decisionUmaking! (SDM)! is! seen! as! the! ‘middle’! approach!
between!the!paternalistic!and!informed!choice,!wherein!both!the!professional!and!the!patient!
is!recognized!as!an!expert!about!the!health!care!of!the!patient.!Shared!decisionUmaking!could!
help!to!improve!the!communication!between!physician!and!patient!as!it!may!foster!mutual!
understanding!and!elicit!the!specific!needs!and!concerns!of!the!immigrant!patient.!However,!
while!SDM!has!become!a!popular!model!in!health!communication,!the!question!is!how!it!can!
be!implemented!in!intercultural!contacts!between!physician!and!patient.!Insight!into!shared!
decisionUmaking!between!these!groups!may!improve!the!contact!between!them!and!enhance!
the! quality! of! care! in! a! society! that! is! rapidly! becoming! more! multicultural.! In! addition,!
several!articles!refer!to!the!importance!and!the!demand!for!SDM!in!the!oncology!department.!
Communication!is!a!prerequisite!for!SDM,!however!disparities!in!communication!can!occur!
regarding!different!cultures.!Therefore,!Teal!and!Street!have!identified!five!essential!cultural!
communication!competences!for!the!professionals,!which!can!lead!to!a!better!implementation!
of!SDM.!In!this!research!it!was!investigated!which!barriers!and!possible!solutions!exist!for!
implementing!SDM!in!the!oncology!department!of!the!SLAZ!Hospital!with!regard!to!the!five!
main!essential!intercultural!communication!competences!of!Teal!and!Street!(2008).!
Methodology.+ After! a! desk! study,! semi! structured! interviews! are! performed! with!
health!care!professionals!(6)!and!cancer!patients!(6).!All!patients!had!already!gone!through!
the!decision!making!process!with!regard!to!their!treatment!in!order!to!analyse!it!according!to!
the! theoretical! framework.! Afterwards,! a! content! analysis! approach! is! used! to! analyse! the!
qualitative!data.!
Results.+Lack!of!tools!and!empathy!during!conversations,!time!limit!with!specialists,!
varying!‘social!antenna’!of!the!professionals,!paternalistic!view!of!the!patients,!the!feeling!of!
being!thrown!in!a!rushing!train!and!unawareness!are!possible!barriers!for!SDM!with!regard!
to!intercultural!patients.!The!professionals!stressed!that!language!is!the!greatest!barrier.!The!
telephone! interpreter! is! rarely! used,! leading! that! family! members! serve! as! uncontrollable!
translators.! Dosing! the! high! amount! of! information! whilst! there! is! need! for! more! time! to!
explain!the!information!to!a!patient!with!a!language!barrier!poses!difficulties.!!
Conclusion.!There!is!no!uniformity!or!protocol!for!SDM!apparent.!Education!could!
aid!personnel!in!getting!the!skills!and!awareness!for!SDM,!because!of!the!variations!in!the!
‘social!antenna’!of!health!professionals.!This!antenna!helps!the!health!care!professionals!to!
recognize! cultural! differences! and! also! incorporate! them.! The! greatest! barriers! to!
implementing!SDM!with!regard!to!interculturality!can!be!recognised!among!patients!who!
experience! a! language! barrier.! Despite! the! availability! of! a! telephone! interpreter,!
professionals! rarely! use! these,! because! of! the! lack! of! emotion! in! the! translations.! Also,!
patients!experience!high!levels!of!fear!and!anxiety!with!regard!to!a!diagnosis!of!cancer!and!
mostly!accept!the!treatment!plan!of!the!specialist!while!still!trying!to!overcome!these!feelings!
and!process!the!information.!The!lack!of!tools,!like!leaflets!and!extra!time!for!people!with!a!
language!barrier!may!possibly!lead!to!high!levels!of!patient!ignorance!regarding!the!disease!
4. 4
and!the!treatment!options.!Lastly,!there!appears!to!be!a!need!for!more!specialised!personnel,!
like!immigrant!consultants!who!can!understand!the!culture!and!the!language!of!the!patient.!!
Recommendations.+ More! awareness! and! improvement! of! culturally! competent!
communication! could! be! achieved! by! education.! Case! presentation! by! professional!
colleagues!who!have!an!affinity!with!different!ethnic!cultures!and!moral!deliberation!can!be!
arranged.! Furthermore,! a! ‘colleague! as! interpreter’! system! can! be! set! up! for! verifiable!
translations! at! conversations! with! patients! who! have! a! language! barrier.! It! is! also!
recommended!to!increase!the!number!of!leaflets!and!other!appropriate!tools!and!to!translate!
the!leaflets!into!a!number!of!common!foreign!languages!that!are!used!in!the!hospital,!such!as!
Arabic,!Turkish!and!English.!The!translations!should!not!be!literal,!but!must!rather!be!done!
by!persons!who!know!the!culture!and!adapted!accordingly.!It!is!also!recommended!to!pay!
attention!for!the!running!out!consulting!hours!with!migrant!patients,!who!face!a!language!
barrier.!!
!
+ !
7. 7
1.)Introduction!
Over!the!last!years,!Dutch!healthUcare!policy!has!been!marked!by!an!interesting!combination!
of! costUcontainment! policies! alongside! an! assiduous! eagerness! of! marketUoriented! reforms!
(Schut! et! al.,! 2005).! Together! with! this! eagerness,! patient! participation! is! increasingly!
recognized!as!a!key!component!in!the!redesign!of!health!care!processes!(Longtin!et!al.,!2010).!
According!to!Frosch!and!Kaplan!(1999)!it!has!generally!been!agreed!that!patients!could!be!
involved! in! making! decisions! about! their! own! health! and! treatment! (Frosch! and! Kaplan,!
1999).!Adjacent!to!this,!Gafni!et!al.!(1998)!states!that!broadly!three!models!of!patientUdoctor!
relation!can!be!described:!paternalism,!informed!choice!and!shared!decisionUmaking!(Gafni!
et!al.,!1998).!While!a!paternalistic!view!allows!the!physician!a!dominant!role,!informed!choice!
represents! the! opposite.! Namely,! with! informed! choice,! the! patient! is! provided! with!
sufficient! information! and! the! doctor! withdraws! from! the! decision! making! process.! The!
approach! which! meets! at! the! ‘middle’! between! the! paternalistic! approach! and! informed!
choice!is!called!shared+decisionAmaking+(SDM)!(Charles!et!al.,!1997).!Stewart!(1995)!states!that!
selfUdetermination,!the!right!to!be!informed!about!all!treatment!options!and!the!right!to!an!
appropriate! and! optimal! overview! of! a! patient’s! disease! are! essential! principles! of! shared!
decision!making.!!
1.1.!Quality!of!healthcare!
The!late!90s!have!witnessed!the!emergence!of!the!term!shared+decisionAmaking!that!received!
increasing! worldwide! support,! since! it! is! associated! with! improvements! in! the! quality! of!
health!care!(Frosch!and!Kaplan,!1999;!Da!Silva,!2012).!Several!researchers!stated!that!shared!
decisionUmaking! should! be! the! norm! in! most! medical! practice! for! several! reasons!
(Beauchamp! et! al.,! 2001).!For! example,! involvement! of! the! patient! in! the! decisionUmaking!
process! results! in! an! improvement! in! health! outcome,! since! the! patient! is! more! likely! to!
adhere! to! the! provided! treatment! (Stewart! et! al.,! 1995).! Furthermore,! the! use! of! aids! like!
SDM,!which!are!‘preferenceUsensitive’!towards!the!patient,!results!in!a!better!understanding!
and! knowledge! about! the! disease,! better! risk! perception,! fewer! patient! decisions! made!
against! their! own! values! and! thus! more! patient! decisions! which! are! consistent! with! their!
preferences!(Stacey!et!al.,!2011).!Fewer!misunderstandings!between!the!patient!and!physician!
about!the!treatment!lead!also!to!fewer!prescribing!errors!(Stacey!et!al.,!2011;!Da!Silva,!2012).!!
1.2.!!Intercultural!society!!
In!today’s!multicultural!society,!health!care!professionals!are!increasingly!confronted!with!
different! cultures! and! languages,! leading! to! challenging! problems.! For! example,! in! the!
Netherlands,! approximately! two! million! people! are! of! nonUwestern! origin! (CBS,! 2014).!
Approximately! twenty! per! cent! of! the! total! population! of! the! Netherlands! consists! of!
immigrants,!of!which!approximately!ten!per!cent!are!nonUwestern!immigrants!(CBS,!2014).!
Given! that! people! from! different! cultures! hold! different! beliefs! about! health,! illness! and!
communication! (Gudykunst,! 1997),! the! patientUphysician! communication! faces! challenging!
problems.! These! divergent! beliefs,! as! well! as! linguistic! barriers! that! often! exist! between!
8. 8
members! of! different! cultures,! confront! health! care! practitioners! with! the! difficult! task! of!
delivering! good! quality! care! to! a! wide! diversity! of! patients,! each! bringing! his! unique!
background!to!the!medical!encounter!(Gudykunt,!1997).!
!
Results! of! a! number! of! survey! studies! indicate! that! there! is! more! misunderstanding,! less!
compliance! and! less! satisfaction! in! intercultural! medical! consultations! compared! to! intraU
cultural! medical! consultations! (Harmsen! et! al.,! 2003;! Laveist! et! al.,! 2002).! Furthermore,!
numerous!studies!have!shown!that!there!are!considerable!disparities!in!access!to!care!as!well!
as!in!health!outcomes!as!a!consequence!of!patients’!ethnic!background.!For!example,!ethnic!
minority!patients!are!less!likely!to!be!recommended!for!some!treatments!than!other!patients!
(Ibrahim!et!al.,!2003;!RuckerUWhitaker!et!al.,!2003).!Although!these!disparities!in!health!care!
are! probably! partly! related! to! socioUeconomic! variables! such! as! income,! gaps! in! doctor–
patient!communication!are!likely!to!play!a!crucial!role!as!well,!since!it!is!well!known!that!this!
factor! is! favourably! associated! with! various! healthUrelated! outcomes!(Roter,! 1992).! Hence,!
possible!gaps!in!intercultural!medical!communication!seem!to!place!ethnic!minority!patients!
at!an!increased!risk!of!receiving!inferior!care!(Schouten!et!al.,!2005). !
1.3.!Shared!decisionUmaking!and!intercultural!differences!
Shared!decisionUmaking!could!help!to!improve!the!communication!between!physician!and!
immigrant!patient!as!it!may!foster!mutual!understanding!and!elicit!the!specific!needs!and!
concerns! of! the! immigrant! patient! (Frosch! and! Kaplan,! 1999).! However,! while! shared!
decisionUmaking! has! become! a! popular! model! in! health! communication! (Schouten! et! al.!
2005),! the! question! is! how! SDM! can! be! implemented! in! intercultural! contacts! between!
physician! and! patient.! Insight! into! shared! decisionUmaking! between! these! groups! may!
improve!the!contact!between!them!and!enhance!the!quality!of!care!in!a!society!that!is!rapidly!
becoming!more!multicultural!(Schouten!et!al.,!2005).!
!
Elwyn! (2001)! reviewed! the! instruments! by! which! measurement! of! the! involvement! of! the!
patients!in!SDM!is!possible.!None!of!the!instruments!were!designed!for!measuring!patient!
involvement! and! the! instruments! were! oldUfashioned! (Elwyn! et! al.,! 2001),! resulting! in! a!
serious! hurdle! in! getting! SDM! into! practice.! Thus,! the! principles! of! SDM! are! well!
documented!but!there!is!a!lack!of!guidance!about!how!to!accomplish!the!approach!in!routine!
clinical! practice.! More! research! needs! to! be! done! to! understand! what! factors! hinder! or!
facilitate!the!implementation!of!SDM!in!clinical!practices!for!migrants!(Frosch!and!Kaplan,!
1999),!starting!with!the!patients’!willingness!and!opportunity!to!participate!in!the!decision!
making!process.!!
‘’For the two parties to dance together, the physician needs to know what kind of dance the
patient prefers and the steps that this involves. Otherwise, the dance will be punctuated with
false starts and missteps, creating tension between the partners and impeding their ability to
work together’’ (Charles et al., 1999).
9. 9
1.4.!Shared!decisionUmaking!and!cancer!
A!challenging!aspect!of!shared!decisionUmaking!is!the!engagement!of!cancer!patients!in!the!
decisionUmaking! about! their! treatments.! Interestingly,! a! study! of! Luker! et! al.! (1995)! about!
information!priorities!of!new!patients!with!breast!cancer!identified!a!top!three:!!information!
about! the! chance! of! cure,! information! about! the! spread! of! disease! and! information! about!
treatment! options! (Luker! et! al.,! 1995),! which! is! an! essential! element! of! SDM.! However,!
implementing!SDM!in!cancer!care!is!often!complex.!High!levels!of!uncertainty!may!exist,!and!
health! care! providers! must! help! patients! understand! the! potential! risks! versus! benefits! of!
different! treatment! options,! while! recognizing! the! huge! shock! that! being! diagnosed! with!
cancer! is! for! the! patient.! To! implement! SDM! in! oncology! practice,! physicians! and! other!
health! care! providers! need! to! understand! the! components! of! SDM! and! know! what! the!
approaches!to!supporting!and!facilitating!this!process!as!part!of!cancer!care!are!(Kane!et!al.,!
2014).!!
1.5.!Sint!Lucas!Andreas!hospital!!
The!Sint!Lucas!Andreas!Hospital!(SLAZ)!in!Amsterdam!provides!approximately!60U70%!of!
their! care! to! patients! with! a! different! origin! than! the! indigenous! population! in! the!
Netherlands,! mainly! from! Turkey! or! Morocco.! Therefore! it! is! of! a! major! importance! that!
research! is! performed,! focussing! on! this! specific! population.! SLAZ! called! several! projects!
into! existence,! such! as! the! workgroup! for! ethnic! diversity! within! the! hospital.! This! work!
group!aims!to!create!a!framework!for!activities!that!support!knowledge!and!skills!regarding!
ethnic! diversity! among! patients! and,! with! that,! improve! the! care! that! they! deliver! to! this!
specific!patient!group1.!In!this!context,!the!connection!between!the!multicultural!background!
of! the! hospital! and! shared! decisionUmaking! is! one! of! the! most! important! and! challenging!
aspects!to!investigate.!!
1.6.!Research!objective!and!research!question!!
As!little!is!known!about!the!reason!why!SDM!is!not!implemented!in!the!SLAZ,!in!particular!
in!the!oncology!department,!taking!into!account!the!intercultural!difference!between!patient!
and! doctor,! the! objective! is! formulated! as! follows.! The! aim! of! this! study! is! to! make!
recommendations!to!the!SLAZ!to!improve!the!knowledge!and!skills!needed!for!SDM!within!
the!hospital!in!order!to!have!a!clear!and!transparent!intercultural!decisionUmaking!process!
between! patients! and! health! care! professionals.! This! will! be! performed! by! making! an!
analysis!of!the!current!situation,!centred!on!identifying!what!factors!hinder!SDM!within!the!
oncology!department!with!regard!to!the!immigrant!patient.!
!
Hence,! to! achieve! the! research! objective! a! central! research! question! was! formulated.! How!
can! the! process! of! decisionUmaking! be! improved! in! the! oncology! department,! taking! into!
account!barriers!resulting!from!intercultural!differences?
1
Werkgroup!Etnische!Diversiteit.!Visiedocument!Etnische!Diversiteit.!Amsterdam;!2012:17.
10. 10
2.)Theoretical)background)
2.1.!Definitions!of!shared!decision!making!
Patient!participation!in!decisionUmaking!or!SDM!has!several!definitions!and!interpretations,!
of! which! the! essence! is! that! patients! and! professionals! decide! together! about! a! treatment.!
Charles! (1999)! cites! several! authors! and! states! that! shared! decisionUmaking! is! seen! as! a!
mechanism! for! decreasing! the! imbalance! of! power! and! information! between! doctors! and!
patients! by! expanding! patientsn! information! base,! sense! of! autonomy! and! control! over!
treatment! decisions! that! influence! their! wellUbeing! (Eddy,! 1990;! Ryan,! 1992;! Emanuel! and!
Emanuel,!1992).!Others!define!SDM!as!an!approach!‘where!clinicians!and!patients!share!the!
best!available!evidence!when!faced!with!the!task!of!making!decisions,!and!where!patients!are!
supported!to!consider!options,!to!achieve!informed!preferences’!(Elwyn!et!al.,!2010).!Charles!
et!al.,!has!extensively!described!SDM!with!four!key!elements!of!SDM!as!follows:!1)!At!least!
two!participants!(physician!and!patient)!are!involved;!2)!Both!parties!share!information;!3)!
Both! parties! take! steps! to! reach! a! consensus! about! the! preferred! treatment;! and! 4)! An!
agreement!is!reached!about!a!treatment!decision!(1999).!!
2.2.!Shared!decision!making!in!practice!!
Elwyn!et!al,!(2012)!attempted!to!translate!conceptual!descriptions!of!SDM!into!a!threeUstep!
model.! It! is! purposed! as! a! guideline! for! bringing! SDM! into! practice! and! integrates!
communication!skills!for!the!physicians!(Elwyn!et!al.,!2012).!!Three!steps!are!distinguished:!
choice!talk,!option!talk!and!the!decision!talk,!wherein!deliberation!is!supported!through!the!
process!of!decision!making.!In!the!choice!talk,!the!physician!conveys!awareness!at!the!patient!
that!several!choices!of!treatment!are!available.!Subsequently,!the!option!talk!will!provide!the!
patient! with! all! detailed! information,! so! that! in! the! decision! talk! the! patient! is! enabled! to!
choose!the!best!option!according!to!his!preferences.!The!intention!is!that!the!patient!will!go!
from!his!initial!preferences,!which!are!based!on!the!awareness!of!the!options,!to!informed!
preferences! (based! on! the! most! relevant! benefits! and! risks)! (Towle! et! al.,! 1999).! Figure! 1!
shows!an!illustration!of!the!deliberation. !
!
!
!
2.2.!Reasons!for!implementing!shared!decision!making!!
Several!reasons!can!be!mentioned!why!shared!decisionUmaking!should!be!implemented!in!
health! care,! such! as! respecting! autonomy,! beneficence! and! nonUmaleficence.! Respecting!
11. 11
autonomy! enables! individuals! to! make! informed,! reasoned! choices.! However,! it! is! also!
needed!in!order!to!balance!the!benefits!of!treatment!against!the!risks!and!costs,!which!is!the!
beneficence! part.! The! nonUmaleficence! aspect! of! SDM! is! about! avoiding! harm.! Patients’!
preferences!must!be!determined!in!order!to!judge!whether!the!benefits!and!risks!of!treatment!
are! balanced! from! a! patient’s! perspective.! ! This! can! result! in! the! avoidance! of! procedures!
which! may! harm! patients! and! thus! which! they! would! rather! not! have! if! they! were! well!
informed.! Abundant! evidence! of! a! reduction! in! the! use! of! tests! and! elective! procedures!
shows!that!patients!tend!to!make!more!conservative!judgments!than!their!doctors!(Stacey!et!
al.,!2011).!Shared!decisionUmaking!may!thus!also!reduce!both!underuse!as!well!as!overuse!of!
unjustified! practice! and! consequently! reduce! the! costs,! although! no! hard! evidence! on! the!
matter!exists.!The!involvement!of!lessUeducated!people!to!the!same!extent!as!those!who!are!
more!educated!may!also!enhance!the!sense!of!justice!and!equity!(fair!distribution!of!benefits,!
risks,! and! costs).! Lastly,! SDM! may! lead! to! better! health! outcomes! and! lower! prosecution!
rates,!though!there!is!little!evidence!on!this!matter!(Hack!et!al.,!2006;!Légaré!et!al.,!2010).! !
2.3.!Problems!with!implementation!of!SDM!
Despite!the!benefits,!researchers!state!that!SDM!has!not!yet!been!widely!adopted!by!health!
care!professionals!(McKinstry,!2000).!Critics!of!SDM!point!out!the!impossibility!of!providing!
information!about!the!potential!benefits!and!risks!of!all!treatment!options!and!the!possible!
harm!in!divulging!all!the!uncertainties!in!medical!care.!Increasing!the!patient’s!involvement!
in! the! decision! making! process! may! lead! to! the! spread! of! costly,! unnecessary! or! harmful!
procedures!which!could!place!unwarranted!demands!on!health!care!resources.!Interestingly,!
another!argument!of!the!critics!is!that!the!patients!do!not!want!to!participate!in!decisions!
(Coulter,!1997).!Additionally,!culture!and!ethnicity!have!also!often!been!cited!as!barriers!in!
effective!communication!between!physician!and!patient!(Schouten!et!al.,!2005).!!!
!
Although! SDM! should! be! the! norm! in! most! medical! practices,! it! is! not! suited! to! every!
situation.!For!example,!some!patients!are!disempowered!by!their!illness.!A!patient!who!has!
to!undergo!surgery!immediately!because!he!is!shot!and!has!unstable!vital!signs!is!not!able!to!
decide!whether!or!not!he!wants!surgery.!Because!there!is!only!one!reasonable!option!in!this!
situation,!shared!decisionUmaking!cannot!be!applied!here.!This!predication!is!accordant!with!
some!accounts!of!SDM!that!are!explicitly!limited!to!situations!in!which!more!than!one!choice!
exists!(Charles!et!al.,!1997;!Towle!et!al.,!1999;!Katz,!1984),!and!with!research!suggesting!that!
‘’Edward (aged 75) had recently been diagnosed as having an enlarged prostate gland causing him
bothersome urinary symptoms. He was offered surgery as the most effective treatment and accepted
the recommendation. Before surgery he enjoyed an active sex life, which was important to him and his
wife, but this was seriously affected by the surgery. He had been made aware that some men have
sexual problems after surgery but he did not feel as if he’d had a chance to consider the extent of this
risk or to consider whether this was a concern to him personally. Looking back, he feels that if he had
been given more of a chance to discuss his preferences, he may have postponed surgery in favour of
“watchful waiting”. (Elwyn et al., 2012).
12. 12
physicians!believe!that!SDM!is!particularly!appropriate!in!situations!for!which!there!is!no!
professional!consensus!on!the!best!treatment!(Elwyn!et!al.,!1999).!Some!physicians!indicate!
that!patients!do!not!have!the!willingness!to!be!involved!in!decisions!or!lack!the!capacity!for!
it.!Besides!this,!they!often!worry!about!the!fact!that!the!patient!may!opt!for!a!decision!that!is!
not!the!best!for!him.!Others!think!that!SDM!is!not!achievable!because!of!time!pressure,!or!
claim! that! they! are! already! doing! SDM,! although! data! from! patient! experience! surveys!
indicates!the!opposite!(ZikmundUFisher!et!al.;!Coulter!2010).!
2.4.!Essential!intercultural!communication!
Communication!is!a!prerequisite!for!SDM,!however!disparities!in!communication!can!occur!
regarding!different!cultures!(Teal!and!Street,!2008).!According!to!Cross!et!al.!(1989),!culture!is!
defined! as! the! “integrated! pattern! of! human! behaviour! that! includes! thoughts,!
communications,!actions,!customs,!beliefs,!values!and!institutions!of!a!racial,!ethnic,!religious!
or!social!group”!(Cross!et!al.!1989).!Since!SLAZ!has!a!wide!variety!of!different!ethnicities,!this!
research!has!defined!the!term!interUcultural!as!‘between!different!ethnicities’.!As!mentioned,!
due! to! increasing! migration,! the! health! care! system! in! the! Netherlands! is! challenged! by! a!
multiUethnic!society!(Frenk!et!al.,!2010).!One!of!the!main!issues!where!consequences!of!this!
multiUethnic! society! can! be! seen! is! in! the! interaction! between! patients! and! doctors.!
Subsequently,! one! of! the! most! challenging! areas! of! healthcare! communication! is! the!
culturally!diverse!patient!(Silverman!et!al.,!2008).!Misunderstandings!can!result!in!a!decrease!
in!the!quality!of!the!health!care!(Ferguson!et!al.,!2002).!!
)
Several!aspects!have!to!be!considered!when!it!comes!to!intercultural+communication+between!
physician!and!immigrant!patient.!PatientUcentred!communication,!which!takes!into!account!
the!cultural!aspects!of!a!patient,!is!frequently!linked!to!improved!health!outcomes!(Epstein!
and! Street,! 2007;! Mead! and! Bower,! 2002).! Teal! and! Street! (2008)! have! identified! specific!
communication!skills!,!which!help!to!increase!the!cultural!competence!of!the!physician,!so!as!
to! get! an! advanced! repertoire,! greater! awareness,! a! stronger! ability! to! adapt! to! the!
intercultural!patient!and!more!knowledge!about!the!situation!of!the!patient!(see!Appendix!
4).!The!communication!competences!are:!nonAverbal+behaviour,+verbal+behaviour,+recognition+of+
potential+differences,+incorporation+of+cultural+knowledge+and+negotiation+&+collaboration!(Teal!and!
Street,!2008).!!
!
NonAverbal+ behaviour+ skills! of! the! physician! contribute! to! the! reflection! of! the! physician’s!
respect! and! include! actively! listening! to! the! patient! (Berlin! &! Fowkes,! 1983).! Eye! contact,!
physical! space,! facial! expressiveness! and! the! use! of! gestures! are! examples! of! nonUverbal!
activities.!Verbal+behaviour!of!the!doctor!creates!understanding!for!the!situation!of!the!patient!
as!a!connection,!by!just!asking!about!the!problems!of!the!patient.!Recognition!of!emotional!
cues!from!the!patient!and!acknowledgment,!reflection,!and!calibration!of!the!emotion!by!the!
physician! is! also! important! at! this! stage! (Coulehan! et! al.,! 2001).! Whereas! (non)! verbal!
behaviour!is!useful!for!every!consultation,!recognition+of+potential+differences+is!more!essential!
13. 13
for!the!culturally!different!patient!in!order!to!forestall!possible!misunderstandings!and!social!
distance!(KimUGodwin!et!al.,!2001).!Openness!is!required,!since!the!physician!has!to!identify!
potential!cultural!differences!by!inviting!the!patient!to!question,!allowing!for!the!different!
perspective!of!the!patient!and!exploring!the!preferences!for!involvement!in!medical!decisionU
making.!!!
!
Besides! the! recognition! of! potential! differences,! the! incorporation+ of+ cultural+ knowledge! is!
another!very!important!skill,!since!limited!cultural!knowledge!about!the!patient!is!a!barrier!
to! actually! incorporating! the! information.! Previously! learned! information! from! similar!
patients,!for!example,!helps!the!physician!to!gain!familiarity!with!the!socioUcultural!nature!of!
the!patient.!In!this!manner,!discussion!of!diagnostic!or!treatment!options!is!more!likely!to!be!
consistent!with!the!profile!of!the!patient,!including!the!patients’!skills,!understanding,!origin!
and!values!(Lipkin,!Quill,!&!Napodano,!1984).!At!last,!Teal!and!Street!(2008)!have!identified!
negotiation+and+collaboration!skills,!which!require!the!doctor!to!work!with!acute!awareness!and!
adaptability!in!order!to!achieve!a!shared!understanding!and!to!accomplish!an!agreement!on!
the!treatment!with!the!patient!from!a!different!culture!(Makoul!&!Clayman,!2006),!avoiding!
any!stereotyping!of!a!patient.!In!the!best!scenario,!a!doctor!with!an!increased!level!of!these!
skills!will!show!more!adaptability!to!the!preferences!for!SDM,!as!he!can!identify!them!more!
effectively.
2.5.!Theoretical!framework!!
Some! barriers! that! impede! the! implementation! of! SDM! in! practice! are! known! from! the!
literature.!To!deal!with!these,!a!lot!of!recommendations!have!been!made!and!tools!created.!
Nevertheless,! SDM! faces! problems! with! multicultural! patients! in! particular.! This! research!
aims!to!elaborate!and!determine!the!barriers!which!multicultural!patients!are!experiencing!
with! regard! to! SDM! in! the! SLAZ! and! the! possible! solutions! for! it.+ The! relevance! and!
explanations!of!the!terms!shown!in!the!theoretical!framework!(Figure!2)!are!described!in!the!
previous! paragraphs.! Eventually,! a! theoretical! framework! is! formed! from! these! concepts.!
This!framework!aims!to!create!more!knowledge!and!awareness!in!the!SLAZ!about!SDM!and!
interculturality.!+
!
14. 14
!
2.6.!SubUquestions!
Three! main! questions! can! be! derived! from! the! theoretical! framework! that! is! illustrated! in!
Figure!2.!!
1. Which!barriers!do!multicultural!cancer!patients!face!regarding!essential!intercultural!
communication!within!SDM!in!the!oncology!department!of!the!SLAZ?!
2. Which! barriers! do! health! care! professionals! face! regarding! essential! intercultural!
communication!within!SDM!in!the!oncology!department!of!the!SLAZ?!
3. In!what!way!can!the!barriers!be!dealt!with?!
!
!
!
)
!
!
! )
SDM
Essential
intercultural
communication
Non-verbal
behavior
Verbal behavior
Recognition of
potential cultural
differences
Incorporation of
cultural
knowledge
Negotiation and
collaboration
Figure 1: Theoretical Framework. )
15. 15
3.)Methodology)
3.1!Research!strategy!!!
Since! this! study! aims! to! explore! why! barriers! with! regard! to! SDM! and! intercultural!
differences! can! be! bridged! in! the! SLAZ,! a! qualitative! study! that! provides! more! inUdepth!
information,! seems! to! be! best! applicable.! After! a! desk! study! on! the! topic! SDM! and!
intercultural! differences! interviews! with! both! professionals! as! well! as! patients! were!
conducted! in! the! period! between! March! 2015! and! May! 2015.! The! combination! of! these!
different!methods!provides!a!deeper!understanding!and!makes!the!research!justifiable.!Also,!
a!combination!of!methods!can!be!used!for!increasing!the!validity!of!findings.!Figure!3!shows!
the!methods!used!in!this!study.2!
!
The! interviews! are! designed! in! a! semiU
structured! fashion! in! order! to! obtain! the!
patients’! and! the! professionals’! view! on! a!
specific! range! of! topics,! such! as! shared!
decisionUmaking! in! the! oncology! department!
and! intercultural! challenges.! The! subU
questions,! which! are! derived! from! the!
theoretical! framework,! are! used! for! the!
direction! of! the! interview! questions! (see!
Appendix! 1).! ! The! semiUstructured! interview!
gives!specific!information!about!the!concepts!
by!means!of!the!subUquestions,!but!also!allow!
new!input!from!both!the!interviewer!and!the!
interviewee.!The!interviews!are!performed!in!
the!SLAZ!and!notes!are!taken.!Also!a!digital!
voice! recorder! is! used! to! record! the!
conversations.! The! interviews! with! patients! varied! between! 25! to! 45! minutes,! while! the!
interviews!with!professionals!lasted!up!to!55!minutes.!The!duration!varied!due!to!the!semiU
structured! design.! All! patients!were! invited! via! the! hospital! and! in! collaboration! with! the!
oncologists.! Also,! all! interviewees! had! already! gone! through! the! decision! making! process!
with!regard!to!their!treatment!in!order!to!analyse!it!according!to!the!theoretical!framework.!!
The!professionals!were!approached!by!mail,!phone!or!face!to!face.!!
3.2.!Research!analysis!
The!aim!of!this!research!was!to!take!all!relevant!variations!and!opinions,!experiences!and!
motivations!into!account.!Data!gathered!by!the!interviews!was!analysed!according!to!the!five!
main!elements!of!intercultural!communication!by!Teal!and!Street!(2008).!!!!!
!
2
Prior%to%of%actually%actively%recruiting%patients,%the%permission%of%the%ethical%committee%(ACWO)%was%requested.
Desk study
6 interviews
with
cancer patients
6 interviews
with health
professionals
Figure 2: Methods
17. 17
4.)Results)
This! section! summarises! the! findings! from! the! interviews! that! are! conducted! with! both!
patients!as!professionals!about!intercultural!communication!within!shared!decisionUmaking!
at!the!oncology!department.!In!total,!12!interviews!are!performed,!whereby!6!with!patients!
and!the!remaining!6!with!health!care!professionals.!!
4.1.!Patients!!
The!patients!varied!between!the!age!of!57!and!72,!consisting!of!two!men!and!four!women.!
They!were!from!Aruba,!Surinam,!Syria,!Morocco!and!Turkey.!Some!patients!had!a!language!
barrier,!but!others!not.!In!general,!older!first!generation!immigrants!are!accompanied!with!
family! members! and! have! a! language! barrier.! Mostly,! the! patient! is! doing! the! followUup!
treatment!at!the!oncology!department,!after!having!diagnosed!and!treated!by!the!surgeon.!So!
the! bad! news! conversation! is! not! always! with! the! oncologist,! but! also! with! several! other!
specialists,!like!the!physician!who!is!specialised!in!lungs!or!the!internist.!!!
4.1.1.Verbal+and+nonAverbal+behaviour+
(NonU)!verbal!behaviour!of!the!physician!is!one!of!the!important!aspects!in!the!model!of!Teal!
and! Street! (2008).! Patients! are! asked! about! their! experience! about! this! aspect! during! their!
conversation! with! the! physician.! Reflecting! of! the! observed! emotion! is! a! part! of! verbal!
behaviour.!About!this!item!patients!who!are!diagnosed!with!cancer:!
!
‘The+doctors+are+not+that+compassionated,+as+I+have+experienced.+They+act+more+like,+ow+gosh+you+are+
diagnosed+with+that,+you+will+get+a+medicine+for+feeling+better.’+(Intv+3)3+
!
‘She+ was+ really+ scared.+ And+ he+ tried+ to+ comfort+ her+ but+ he+ said,+ this+ is+ the+ situation,+ it+ has+ to+ be+
treated.’+(Intv+1)4++
!
‘The+internist,+he+said+to+him,+you+are+terminally+ill.+You+will+not+be+cured+anymore.+That+is+very+hard.+
Bam+bam.+I+experienced+it+like+you+were+just+a+number.+He+has+to+go+again+to+that+internist+the+20th+of+
May,+he+doesn’t+like+him.+But+the+oncologist+not,+she+is+very+emotionally+involved.’+(Intv+7)5+
+
+‘I+think+the+doctors+know+what+kind+of+terrible+emotions+a+cancer+patient+feel.+And+yes,+it+cannot+be+
otherwise,+ they_re+ approaching+ you+ in+ an+ appropriate+ way.+ She+ really+ listens+ to+ you,+ and+ asks+
questions,+and+sets+you+at+ease.’+(Intv+2)6+
%
3
De%artsen%die%zijn%niet%echt%meelevend%wat%ik%zo%ervaar.%Die%zijn%meer%van,%ja%jeetje%je%hebt%dat,%kom%maar%hier,%je%krijgt%een%pilletje%en%
word%je%beter%(intv%3).%%
4
En%ze%was%ja,%ze%vond%het%heel%eng.%En%hij%heeft%haar%wel%geprobeerd%te%troosten%maar%hij%zei,%ja%het%is%niet%anders,%en%het%moet%behandeld%
worden.%(intv%1).!!
5
De%internist,%hij%heeft%tegen%hem%gezegd,%je%bent%ongeneeslijk%ziek,%zo%hup%pats.%Ja,%van%je%wordt%niet%beter.%Dat%is%wel%hard.%Bam%bam%
klaar.%Ik%vond%dat%je%net%een%nummer%was%en%hij%moet%20%mei,%moet%hij%weer%naar%die%internist,%hij%vindt%hem%niet%leuk.%Maar%de%oncoloog%
niet,%die%leeft%wel%mee.%(int%7)%
6
Ik%denk%dat%de%artsen%weten%met%wat%voor%vreselijk%emoties%een%kankerpatiënt%te%maken%heeft.%En%ja,%het%kan%ook%niet%anders,%dat%ze%je%
op%een%leuke%manier%benaderen.%Dat%ze%echt%zo%naar%je%luisteren,%en%de%vragen%stelt,%en%op%je%gemak%stelt.%(intv%2)%
18. 18
When! it! was! asked! whether! the! doctor! could! do! anything! better! or! not,! one! patient!
responded:!
+
‘Yes,+I+find+emotional+involvement+very+important.+You+don+not+need+to+cry,+I+understand+that+as+well.+
But+I+have+to+say,+the+personnel+is+very+emotionally+involved.’+(Intv+3)7+
!
The!physician!should,!especially!when!it!comes!to!patients!who!has!a!language!barrier,!invite!
to! ask! question! when! the! patient! does! not! understand! anything! or! control! whether! the!
patient!does!understand!the!information!or!not.!Subsequently,!jargon!and!speaking!fast!will!
not!helpful!for!the!physician.!!
!
‘He+said+to+me,+did+she+understand+it,+did+you+translate+it+correctly?+Because+he+saw+her+scared+facial+
expression+and+looked+at+her+like+did+she+really+understand+it.’+(Intv+1)8+
%
‘Medical+terms+were+used,+but+they+were+explained+in+an+understandable+language+to+me.+That+was+
pleasant.’+(Intv+2)9+
%
Also,!active!listening!is!an!indispensable!part!of!(nonU)!verbal!behaviour.!A!patient!noticed!
the!time)limit!and!the!doctor!has!to!listen!actively,!otherwise!he!or!she!will!miss!information.!
%
‘We+had+not+much+time,+of+course.+10+minutes+here+and+10+minutes+there.+And+you+have+to+explain+
everything+quickly.’+(Intv+3)
10
+
+
‘I+had+a+lot+of+questions.+But+actually,+I+couldn’t+ask+everything,+because+he+wanted+to+do+everything+
quickly.’+(Intv+7)11+
+
It! seems! difficult! to! estimate! in! what! extent! the! patient! want! to! be! informed.! A! patients!
mention!that!he!was!not!that!much!informed!and!started!directly!with!a!heavy!chemo:!
‘Not+so+very+much,+so+I+started+immediately+with+a+very+heavy+chemotherapy.+So+I+did+not+know+what+I+
encountered.+ I+ encountered+ things,+ which+ I+ didn’t+ know,+ the+ doctors+ said+ to+ me+ that+ I+ would+ be+
sensitive+for+cold,+but+I+still+didn’t+know+how+I+would+experience+it.+(Intv+8)+12+
!
And!he!continues!with!an!example:!
!
7
Ja,%emotioneel%betrokkenheid%vind%ik%wel%heel%erg%belangrijk.%Je%hoeft%er%niet%bij%te%gaan%huilen,%dat%snap%ik%ook%wel.%Ik%moet%wel%zeggen,%
overigens%personeel%daar%die%leeft%wel%mee. (intv%3)%
8
Ja,%hij%zei%toen%tegen%mij,%heeft%ze%echt%begrepen%wat%er%echt%is,%en%heb%je%het%echt%goed%uitgelegd.%Want%soms%zei%ze%van%je%kijkt%heel%eng.%
En%hij%keek%zo%naar%haar%heeft%ze%het%echt%goed%begrepen%dus%ja%(intv%1).%%
9
%Er%werden%wel%medische%termen%gebruikt%maar%ze%werden%wel%in%begrijpelijke%taal%aan%mij%uitgelegd%weetje%wel%dus.%Dat%vond%ik%wel%fijn%.%
(int%2)%
10
We%hadden%natuurlijk%wel%weinig%tijd.%10%minuten%daar%en%10%minuten%daar.%En%je%moet%ook%heel%snel%alles%kwijt%kunnen%(intv%3).%%
11
Ja,%ik%had%heel%veel%vragen.%Ik%kon%eigenlijk%niet%alles%kwijt,%omdat%hij%alles,%ja,%een%beetje%snel%snel%wilde%doen.%(int%7)%
12
Niet%zo%echt%veel,%dus%ik%was%meteen%begonnen%met%een%hele%zware%chemo.%Dus%ik%wist%niet%wat%ik%tegenkwam.%Ik%kwam%dingen%tegen%
die%ik%niet%wist%bijvoorbeeld%de%dokters%zeiden%tegen%mij%nou%je%wordt%gevoelig%van%het%kou,%alleen%dat%dus%hoe%weet%ik%niet%dus%ik%moet%die%
beleving%meemaken
19. 19
‘I+heard+some+things,+but+for+me+it+was+very+vague.+Eventually+I+found+out+by+myself,+so+when+I+had+
the+first+day,+the+so+heavy+chemo,+I+thought+well+it_s+just+the+medicine+so+I+didn’t+brought+a+family+
member+with+me,+but+I+suddenly+began+to+be+giddy.+I+tried+to+walk;+on+street+started+to+be+giddy+and+
felt+ cold+ wind.+ My+ eyes+ were+ no+ longer+ open.+ Really,+ and+ then+ I+ feel+ air,+ cold+ air,+ and+ my+ throat+
collapsed.’+(Intv+8)13+
4.1.2.+Recognition+of+potential+cultural+differences+and+incorporation+of+cultural+knowledge+
The!patients!were!also!asked!to!what!extent!they!recognised!cultural!awareness!and!in!what!
way!they!value!it.!Recognition!of!potential!cultural!differences!can!be!hard!for!physicians,!
because!every!patient!is!different.!Nevertheless,!it!seems!to!make!patients!more!comfortable,!
and!they!think!the!physician!should!know!something!about!the!culture!and!diseases!of!some!
ethnic! groups.! Despite! this,! many! patients! do! not! want! to! be! treated! differently! by! the!
physician! and! do! not! think! that! the! physician! should! know! a! lot! about! the! culture! of! the!
patient;!just!some!appreciation!of!the!culture!is!sufficient.!
%
‘It_s+just+important+that+the+doctor+knows+what+the+background+is.+People+from+the+Mediterranean…+
they+ have…almost+ everyone+ has+ Thalassemia.+ So+ if+ you+ know+ you_re+ coming+ from+ there,+ then+ you+
automatically+know+you+can+have+Thalassemia.+(Int+1)14+
%
‘Yeah,+why...+I+don’t+know,+but+it+is+of+course+important+that+he+knows+something+about+my+culture.+I+
think+that+I+will+be+more+at+ease.’+(Intv+6)+15+
+
‘It+wouldn’t+make+sense+(if+the+physician+knew+more+deeply+about+culture),+what+does+it+add?’+(Intv+
7)16+
!
At! the! same! time,! Surinamese! patients! notice! that! they! are! not! different! than! the! Dutch!
people:!
% %
‘We+ were+ a+ colony+ of+ the+ Netherlands+ for+ 300+ years.+ We+ learned+ from+ Dutch+ books.+ The+ Dutch+
national+anthem,+we+sang+it.’+(Intv+2)17+
!
Assessing! patients’! own! explanatory! models! for! the! disease! and! the! social! context! of! the!
patient,!learning!about!core!concepts!for!patients!(are!more!people!deciding?)!and!asking!for!
the! patients’! perspectives! about! recommended! treatment! are! competences! which! the!
physician!can!use!to!increase!the!success!of!the!intercultural!communication,!according!to!
13
Ik%had%wel%wat%gehoord%maar%was%voor%mij%heel%vaag%en%hoe%weet%ik%niet.%Maar%uiteindelijk%kwam%ikzelf%er%achter,%dus%toen%ik%de%eerste%
dag%zo'n%zware%chemo%had%gehad%ik%dacht%nou%het%is%gewoon%medicijn%ik%heb%het%niemand%geroepen%van%mijn%familie,%maar%opeens%begon%
mij%draaierig%te%worden.%Ik%probeer%te%lopen,%ik%ging%op%straat%en%begon%draaieren%en%koude%wind.%Mijn%ogen%gingen%niet%meer%open.%Echt%
waar%en%dan%voel%ik%lucht,%koude%lucht%en%mijn%hele%keel%klapt%erin.%(int%8) !
14
Het%is%gewoon%belangrijk%dat%de%arts%weet%wat%de%achtergrond%is%zegmaar.%Mensen%uit%de%middellandse%zee,%die%hebben%bijna%iedereen%
heeft%Thalassemie.%Dus%als%je%weet%dat%je%daar%vandaar%komt,%dan%weet%je%automatisch%dat%je%Thalassemie%hebt%bijvoorbeeld.%(int%1)%
15
Ja,%waarom.%Dat%weet%ik%niet%meer,%maar%dat%is%wel%belangrijk%natuurlijk%dat%ie%van%m’n%cultuur%weet.%%Ik%denk%dat%ik%me%dan%meer%op%
mijn%gemak%voel.%(int%6)%
16
Dat%heeft%eigenlijk%geen%zin,%wat%voegt%het%toe?%(int%7)
17
Wij%zijn%300%jaar%kolonie%geweest%van%Nederland.%Uit%de%Nederlandse%boeken%hebben%wij%geleerd.%De%Nederlandse%volkslied%hebben%wij%
gezongen.%(intv%2)%
20. 20
Teal! and! Street.! It! is! important! that! the! physician! knows! how! the! patient! experiences! the!
disease,!in!order!to!adjust!the!treatment!plan.!One!patient!described!her!endometrial!cancer!
as:!‘There+is+a+devil+in+me.’+(Intv+2)18+!
!
It!is!asked!whether!the!patient!has!decided!or!someone!else.!The!daughter!of!a!72Uyear!old!
patient!with!prostate!cancer!answered:!
+
‘Yeah,+we+decided+on+that+(the+treatment)+together.+Of+course,+you+ask:+do+you+want+it+or+not?+It+was+
just+simply+done+jointly.+It+was+also+his+desire,+I+mean,+he+must+be+healed,+right?’+(Intv+7)19+
!
During! a! conversation! with! a! patient! who! is! not! able! to! understand! and! speak! Dutch,! a!
family!member!generally!serves!as!an!interpreter!or!translator.!When!it!was!asked!whether!
the! physician! mentioned! that! the! patient! could! interrupt! any! time! he! or! she! does! not!
understand! something,! in! order! to! be! open! and! to! correct! the! possible! different!
interpretations,!one!patient,!said!in!incomprehension!of!the!behaviour!of!the!doctor:!!
+
‘Exactly+ the+ opposite.+ We+ translate+ it,+ as+ I+ do+ now.+ I+ translate+ it+ and+ then+ the+ internist+ comes+ in+
between+like+yes+yes+uhhm,+you+are+both+talking+at+the+same+time.+Yes,+that+is+our+language,+like+this+
we+talk.+‘You+are+talking+at+the+same+time,+can+you+not+discuss+this+later?’+he+said.+But+the+oncologist,+
she+waits+until+I+explain+it+to+him.+And+then+she+goes+further,+it+is+not+interrupted.’+(Intv+7)20+
!
The! same! patient! continued! her! story! mentioning! that! taking! time! and! giving! space! to!
present!a!question!at!the!end!of!the!consultation!is!a!positive!point:!!
‘The+oncologist,+she+gives+me+the+space.+And+also+asks+at+the+end+whether+we+have+questions+or+not.+Do+
you+ want+ to+ know+ something?+ And+ sometimes+ afterwards,+ after+ we+ finish,+ we+ realise+ we+ forgot+
something,+ so+ we+ wait+ in+ the+ hallway+ and+ she+ still+ makes+ time+ for+ us.+ That+ was+ different+ with+ the+
internist.’+(Intv+7)21+
!
In! order! to! provide! the! information,! which! is! needed! to! understand! the! disease! and! the!
treatment!options,!the!physicians!can!use!tools.!However,!patients!very!often!mention!that!
the!physician!just!sketches!out!the!situation!on!paper!and!does!not!use!another!tool.!And!the!
specialised!nurse,!who!gives!the!patients!more!information!about!the!treatment!options,!did!
not!give!them!a!leaflet!in!a!simple!form!about!the!disease!itself.!Also,!these!leaflets!are!not!
18
Er%zit%een%duivel%in%me%(intv2)
19
Ja%dat%hebben%we%gewoon%samen%besloten,%natuurlijk%vraag%je%van,%wil%je%dit%wel?%Het%was%gewoon%gezamenlijk.%Het%was%ook%wel%zijn%
eigen%wil.%jawel,%hij%moet%toch%beter%worden?%(int%7)+
20
Juist%tegenovergestelde.%Wij%vertalen%het,%zoals%ik%het%nu%doe.%Ik%vertaal%het%en%dan%komt%de%internist%er%tussen%van%%ja%ja%uhhm,%van%jullie%
praten%door%elkaar%ofzo.%Ja,%dat%is%onze%taal,%zo%praten%wij.%Jullie%praten%door%elkaar,%kunnen%jullie%dat%niet%straks%bespreken?%Maar%de%
oncoloog%wacht%tot%ik%het%aan%hem%uitleg.%En%dan%gaat%ze%weer%verder,%wordt%niet%onderbroken.%(Int%7)%
21
De%oncoloog,%zij%laat%me%de%ruimte.%%Vraagt%ook%op%het%laatst%van,%heb%je%nog%vragen?%Wil%je%nog%iets%weten?%En%achteraf%soms,%zijn%we%
klaar,%zijn%we%iets%vergeten,%wachten%we%even%op%de%gang%en%dan%neemt%ze%nog%de%tijd%voor%ons.%Dat%was%anders%bij%de%internist.%(int%7)!
21. 21
available!in!different!languages.!Just!one!patient!mentioned!a!CD!about!the!experiences!of!
other!cancer!patients.!
!
‘She+gave+me+a+booklet+explaining+what+chemotherapy+is,+what+I+need+to+do+etcetera.+I+got+addresses+for+
the+wigs,+because+my+hair+is+already+falling+out+awfully+after+the+first+time.+For+me+it+was+not+really+
enough.’+(Intv+6)22+
‘I+borrowed+a+CD+from+the+hospital.+But+it+was+about+people,+talking+about+themselves.’+(Intv+8)
23
!
Additionally,! a! DutchUspeaking! 54Uyear! old! liver! cancer! patient! reports:+ ‘I+ found+ the+ Dutch+
language+leaflets+more+than+enough.’+(Intv+8)+
24
+
!
The! patient’s! fear! of! the! disease! and! the! chemo! is! often! big,! and! a! lot! of! guiding! and!
information! provision! is! needed.! Therefore! a! patient! mentioned! the! need! for! more!
specialised)personnel.!!
!
‘They+do+not+even+have+time+to+go+to+the+toilet,+because+the+bell+rings+every+time.+So,+you+should+look+
after…how+can+we+guide+the+patient?+Do+I+need+more+hands,+do+I+need+another+kind+of+personnel?’+
(Intv+3)25!
!
A! patient! with! liver! and! intestinal! cancer! addressed! an! important! (financial! and!
organizational)!dilemma!for!cancer!patients:!
‘Better+referral.+No,+not+home+help,+but+people+with+problems,+real+problems,+look...they+suffer+under+
these+diseases...+there+are+many+letters+(for+example+tax+administration)+which+we+must+deal+with.+I+
have+difficulty+with+it,+and+it+is+also+a+kind+of+jungle+that+you+end+up+in,+a+jungle+with+those+laws,+with+
the+bureaucracy.+Yeah,+you+do+not+know+where+to+go.+A+kind+of+legal+aid,+social+assistance+could+help,+
you+are+alone.’+(Intv+8)26+
4.1.3+Negotiation+and+collaboration++
In! SDM,! the! patient! and! physician! decide! together! about! the! treatment.! However,! some!
patients!do!not!even!want!to!decide!and!believe!that!the!physician!knows!the!best!for!them,!
which! is! a! paternalistic) view.! Many! patients! mention! the! duration! of! the! education! and!
22
Ze%heeft%me%wel%een%boekje%met%wat%is%chemotherapie%dat%soort%dingen%gegeven,%wat%ik%moet%doen%allemaal.%Ik%krijg%adressen%voor%de%
pruiken%of%zo,%want%me%haren%valt%al%de%eerste%keer%vreselijk%uit.%Voor%mij%was%niet%echt%genoeg.%(intv%6)+
23
Ik%had%die%CD%geleend.%Van%hier,%van%ziekenhuis.%Maar%die%informatie,%ze%praten%over%zichzelf.%(int%8)
24
Ik%vond%Nederlandse%taal%meer%dan%genoeg%(int%8)
25
Ze%hebben%nog%geen%eens%de%tijd%om%te%poepen%en%te%plassen,%want%elke%keer%gaat%de%bel.%Dus%je%moet%ook%eigenlijk%kijken%van,%hoe%kun%
je%de%patiënt%daar%goed%in%begeleiden.%Heb%je%daar%meer%handen%voor%nodig,%heb%je%daar%ander%soort%personeel%voor%nodig%(int3)
26
Betere% verwijzing.% Nee,% niet% huishelp,% maar% mensen% met% problemen,% echte% problemen% die,% kijk% ze% moet% er% onder% lijden% onder% die%
ziektes...er% zijn% veel% brieven% en% die% moeten% geregeld% worden.% Ik% heb% er% moeite% mee,% en% het% is% ook% een% soort% oerwoud,% dat% je% in% een%
oerwoud% terecht% bent% gekomen% met% die% wetten% met% die% bureaucratie.% Ja,% je% weet% niet% waar% je% naar% toe% moet.% Soort,% juridische% hulp,%
maatschappelijke%hulp%zou%kunnen%helpen,%je%staat%er%alleen%voor.%(int%8)%
22. 22
experience!of!the!specialists.!In!addition!to!that,!many!cancer!patients!are!too!afraid!to!make!
decisions.!They!feel!like!they!are!stepping!in!a!rushing!train.!!
!
‘The+doctor+said+you+can+decide,+but+my+dad+asked+him+what+is+the+best.+You+are+going+to+decide+for+us.+
For+us+it+was+just+scary+to+hear+it+for+the+first+time.’+(Intv+1)27+
+
‘Look,+they+are+also+humans+and+they+do+this+daily+and+they+know+how+can+treat+their+patients.+So,+I+
pretend+that+they+have+done+what+is+normal+and+how+it+has+to+be.’+(Intv+8)28+
!
‘Everything+was+so+fast.+I+heard+about+it+on+the+20th+of+March+and+now+it+is+the+beginning+of+May.+So,+
within+one+and+a+half+months,+I+had+everything+including+the+treatment.+That+is+fast,+don’t+you+think?’+
(Intv+6)
29
Many! patients! mentioned! that! they! did! not! decide! on! their! treatment.! Two! main! reasons!
were!cited:!either!they!were!too!afraid!and!left!the!decision!up!to!the!doctor,!or!there!was!no!
choice!and!again!they!left!the!decision!up!to!the!doctor.!The!next!quote!communicates!this:!!
%
‘You+know,+at+a+given+moment…+Look,+she+explains+why+she+would+go+for+a+maximum+cure.+She+is+the+
oncologist,+she+is+the+expert,+she+surely+knows+why,+and+she+explained+to+me+why,+because+the+tumor+is+
in+a+very+crucial+place.+And+therefore,+the+decision+is+made+for+this+treatment.’+(Intv+1)30+
!
‘Chemotherapy,+this+is+very+sensible+for+chemotherapy,+it+will+work+fast.+I+said+okay,+this+will+be+done,+
okay,+that+will+be+done,+okay.+When+you…,+you+don’t+think+anymore+about+what+more+could+it+be?+
How+ can+ I+ be+ treated+ in+ another+ way?+ Or+ another+ treatment,+ you+ don’t+ ask+ that+ anymore.+ The+
physician+decided’+(Intv+6)31+
!
‘There+was+no+decision+at+all.+It+was+more+like,+‘this+is+the+treatment+that+we+have,+only+treatment+we+
have,+do+you+agree?+Do+you+want+to...+does+he+want+to+be+treated?’+And+then+we+discussed+together+
and+said+yes,+he+wants+it.’+(Intv+7)32!
!
Much! has! been! said! about! information! provision! and! creating! more! patient! knowledge.!
Nevertheless,!particularly!in!reference!to!cancer!patients,!patients!are!not!able!to!take!all!the!
27
‘De%arts%zei%jullie%mogen%zelf%beslissen%zegmaar,%maar%mijn%vader%heeft%hem%gevraagd%wat%is%goed%zegmaar.%U%gaat%beslissen%voor%ons%
want%ja.%Voor%ons%is%het%gewoon%eng%en%in%het%begin%om%dat%te%horen.’%(int1)!
28
Kijk,%het%zijn%ook%mensen%en%zij%zijn%dagelijks%mee%bezig%en%ze%weten%hoe%zij%hun%cliënten%of%patiënten%bedoel%ik,%moeten%behandelen.%
Dus%ik%neem%aan%dat%zij%gewoon%normaal%gedaan%hebben%hoe%het%hoort.%(int%8)+
29
Alles%was%echt%snel.%Ik%had%20%maart%gehoord%en%nu%is%het%begin%van%mei.%Dus%binnen%anderhalve%maand%alles%gekregen%met%behandelen.%
Dat%is%toch%te%snel%vind%je%niet?%(int%6)
30
Ja,%weetje%op%een%gegeven%moment,%kijk%ze%legt%uit%waarom%ze%voor%de%maximale%kuur%kiest.%Zij%is%oncoloog,%zij%is%de%deskundige,%ze%zou%
wel%weten%waarom,%en%ze%heeft%het%mij%ook%uitgelegd%waarom%weetje%wel,%omdat%de%tumor%op%een%hele%nare%plek%zat.%En%daarom%is%er%
gekozen%voor%deze%vorm%van,%of%deze%hoeveelheid%kuren.%(intv%1)
31
Chemotherapie,%dit%is%heel%gevoelig%voor%chemotherapie,%maar%die%gaat%wel%sneller%werken.%Ik%zeg%toen,%oké%dit%wordt%gedaan%oké%dat%
wordt%gedaan%oké.%Als%jij,%jij%denken%niet%meer%aan%weet%je,%wat%kan%het%nog%meer%zijn?,%hoe%kan%het%meer%behandeld%worden?%of%een%
andere%behandeling.%Dat%vraag%je%eigenlijk%niet%meer.%De%arts%heeft%de%beslissing%genomen.%(intv%6)+
32
Er%was%helemaal%geen%beslissing%genomen.%Het%was%meer%van,%dit%is%de%behandeling%die%we%hebben,%enige%behandeling%die%we%hebben,%
zijn%jullie%het%er%mee%eens?%Willen%jullie…%wiltie%behandeld%worden?%En%toen%hebben%we%samen%besproken,%jahaa%hij%wil%het.%(int%7)%
23. 23
information!the!first!time,!because!they!are!in!massive!shock.!Many!physicians!are!aware!of!
this! and! they! plan! a! second! and! third! appointment.! On! the! other! hand,! some! physicians!
think!that!they!need!even!more!time!to!explain!the!situation!when!the!patient!is!a!poorU!or!
nonUDutch!speaker!in!comparison!with!DutchUspeaking!patients.!
‘Yes,+he+wanted+to+explain+a+lot+of+things,+but+he+said+_I+know+that+you+don’t+want+to+hear+anything+
today.+We_re+going+to+make+other+arrangements+to+explain+it.’+And+so+he+did.+At+the+second+and+third+
appointment+I+started+to+hear+a+little+of+everything,+this+and+this+and+that,+this+is+how+it+works.’+(Intv+
6)+33+
The!patient!does!not!know!the!treatment!options!exactly;!some!vague!ideas!are!presented!to!
the!physician,!which!they!hear!from!colleagues!or!family!members.!However,!because!the!
patient! is! unaware! and! inexperienced,! she! accepts! directly! what! the! physicians! say! about!
these!ideas,!resulting!in!the!patient!not!feeling!internally)fine!with!the!treatment.!!
‘No,+I+asked+it.+My+niece+was…+she+had+lung+cancer,+but+was+diagnosed+early.+It+was+very+small.+She+
had+a+very+good+doctor+there+(in+Turkey)+and+she+used+medications+without+chemotherapy.+It+was+a+
kind+of+injection.+Injected+three+times+or+chemotherapy,+I+explained+that+to+the+doctor.+She+said,+we+
have+ that+ here+ too,+ but+ for+ the+ right+ and+ best+ chemotherapy.+ Actually,+ I+ don’t+ want+ chemotherapy’+
(Intv+6)
34
The!same!patient!follows!her!story!with!the!next!quote;!where!she!clearly!explains!that!she!is!
doing!something!that!she!does!not!want!to:!!
‘I+said+amputate+my+entire+breast.+She+said+_that+is+not+necessary_.+She+says+_after+the+chemotherapy+it+
will+be+over+and+later+on+a+piece+will+be+removed.+Only+that+piece.’+But+she+doesn’t+find+it+necessary+to+
amputate+my+whole+breast.+Nevertheless,+I+have+asked+for+it.+I+don’t+want+that+disease.+But+I+was+not+
assertive+enough+I+think.+Because+instead+of+chemotherapy+you+can+better+amputate+the+whole+breast,+
so+I+am+finished+with+this+disease+in+one+go.+And+that+is+still+my+desire.’+(Intv+6)+35+
+
As!mentioned!earlier,!SDM!is!about!two!experts:!the!doctor!and!the!patient.!This!means!that!
both! parties! have! to! take! their! responsibility.! The! patient! can! take! his! responsibility,! for!
example,! by! investigating! which! treatment! options! are! available.! The! next! quote! conveys!
that!this!did!not!work!for!this!patient:!
!
33
Jawel,%hij%wou%heel%veel%dingen%uitleggen,%maar%hij%zegt%‘’weet%wel%dat%je%niks%wil%horen%vandaag.%We%gaan%andere%afspraken%maken%om%
het%uit%te%leggen’’.%En%dat%heeft%hij%ook%gedaan.%Toen%begin%ik%tweede%afspraak%en%derde%afspraak%begin%ik%beetje%te%horen%van%alles%dit%en%
dit%en%dat,%dat%gaat%zo.%(intv%6)!
34
Mijn%nichtje%was%ook,%zij%had%een%longkanker,%maar%dat%was%meteen%al%in%het%begin%gepakt.%Het%was%heel%klein%hé.%Zij%had%een%heel%goede%
arts%daaro%en%heeft%medicijnen%gebruikt%zonder%chemotherapie.%Het%was%een%soort%prik.%Iets%van%drie%keer%geprikt%of%chemotherapie%dat%heb%
ik%uitgelegd%aan%die%dokter.%Zij%zegt,%dat%hebben%wij%hier%ook,%maar%voor%de%juiste%en%beste%is%chemotherapie.%Maar%ik%wil%eigenlijk%geen%
chemotherapie.%(int%6)
35
Ik%heb%gezegd%haal%me%hele%borst%weg.%Ze%zei%‘dat%hoeft%helemaal%niet’.%Ze%zegt%‘dat%gaat%met%chemotherapie%over%en%later%wordt%wel%een%
stukje%weggehaald.%Alleen%dit%gedeelte%dan’.%Maar%ze%vindt%dat%niet%heel%me%borst%hoeft%weg%te%halen.%Maar%ik%heb%er%wel%om%gevraagd.%Ik%
wil%die%ziekte%niet.%Maar%ik%was%niet%te%stellig%denk%ik.%Want%in%plaats%van%chemotherapie%kan%je%beter%je%borst%weghalen%dat%ik%er%in%één%keer%
af%is.%En%dat%wil%ik%nog%steeds%graag%hoor.+
24. 24
‘When+we+heard+this,+I+looked+for+things,+whether+there+were+other+treatments,+then+I+asked+whether+an+
operation+is+possible.+They+said+no,+all+the+questions+I+asked+were+no+solution.+I+also+asked+if+it+is+not+
better+to+go+to+the+Antonie+van+Leeuwenhoek+Hospital?+No,+because+they+are+working+together+with+us.+
It+also+made+no+sense.’+(Intv+7)36+
About!the!hard!work!of!the!oncologist:!!
I+think+that+oncologists+do+quite+a+lot+of+work.+I+see+them+just+running+harder+and+harder+and+harder.+It+
is+very+tedious.+I+think+I+appreciate+them+very+much+for+their+work,+they+have+to+jump+in+everywhere+
and+are+also+very+nice,+you+see.+I+really+have+great+admiration+for+them.’+(Intv+8)37+
!
!
!
!
!
) !
36
Toen% we% dit% hoorde,% heb% ik% zelf% dingen% opgezocht,% of% er% nog%andere% behandelingen% waren,% toen% heb% ik% gevraagd% van% kan% er% geen%
operatie?%Die%zeiden%nee,%al%de%vragen%die%ik%heb%gesteld%was%geen%oplossing.%Ik%vroeg%ook%van%kunnen%we%niet%beter%naar%Antonie%van%
Leeuwenhoek%ziekenhuis?%Nee,%want%die%werken%samen%met%ons.%Dat%heeft%ook%geen%zin.%(int%7)+
37
Ik%vind%dat%oncologen%behoorlijk%veel%werk%doen.%Ik%zie%ze%gewoon%harder%en%harder%en%harder%rennen.%Het%is%heel%vervelend.%Ik%vind,%ik%
waardeer%ze%heel%veel%van%dat%werk%dat%ze%bij%iedereen%moeten%springen%en%ook%heel%lief%zijn%begrijp%je.%Ik%heb%echt%grote%waardering%voor%
hun.%(int%8)!
25. 25
4.2.!Professionals!!
The!group!of!health!care!professionals!who!were!interviewed!in!this!research!comprises!a!
surgeon,! an! oncologist,! a! spiritual! caregiver! (in! Dutch:! geestelijke+ verzorger),! a! specialised!
nurse!(in!Dutch:!specialistische+verpleegkundige),!an!ANIOS!(physician!who!is!not!in!education!
to!become!a!specialist)!and!a!consultant!about!nursing!in!the!oncology!department!(in!Dutch:!
verpleegkundig+consulent+oncologie).!Their!ages!varied!between!27!and!62.!!!!!!!!!!!!!!!!!!!!!!!!!
4.2.1.+Verbal+and+nonAverbal+behaviour+
The! first! question! to! all! professionals! was! whether! they! act! differently! towards! a! nonU
Western! migrant! in! comparison! with! Dutch! people.! They! all! answered! approximately! the!
same;!they!check!whether!or!not!the!patient!understands)and)speaks)Dutch:!
‘I+don’t+think+that+you+start+very+differently,+because+I+think+anything+you+ask+and+say,+you+need+to+
weigh+a+little+with+anyone.+Hey,+how+does+he+interpret+it,+do+I+see+a+look+of+recognition+or+do+I+see+a+sort+
of+glazed+look+like+‘I+have+no+idea+what+this+guy+is+saying’.+So,+you+see+that+a+lot+with+less+educated+
people,+you+have+to+check+it.’+(Intv+4)38+
‘Yes,+I+always+ask+the+patient+whether+he+speaks+and+understands+Dutch.+You+pay+more+attention+to+
the+ patient+ himself,+ sitting+ across+ from+ you,+ than+ whether+ he+ is+ immigrant+ or+ nonAimmigrant.+ A+
conversation+with+an+old+man+is+very+different+from+a+conversation+with+a+young+person.+Whether+it+is+
an+ educated+ or+ medicallyAtrained+ person+ also+ makes+ a+ difference.+ Or+ whether+ someone+ understands+
statistics+or+not.+So+there+are+lots+of+things+you+should+pay+attention+to+so+that+you+can+adjust+the+way+
of+explanation.+And+one+of+those+is+also+whether+or+not+it+is+an+immigrant.’+(Intv+5)39+
‘I+think+that+we+can+be+too+crude+and+unkind+sometimes,+in+their+eyes.’+(Intv+9)40+
4.2.2.+Recognition+of+potential+cultural+differences+and+incorporation+of+cultural+knowledge+
Using! an! official! translator! is! a! way! of! dealing! with! a! language! barrier! as! a! professional.!
Some!professionals!think!that!an!official!translator!is!a!requirement,!while!others!think!that!
family!is!sufficient.!Others!think!that!neither!work,!because!they!have!both!disadvantages.!!
‘An+ official+ translator+ is+ better,+ because+ there+ is+ a+ more+ objective+ manner+ of+ translating.+ And+
sometimes+there+are+young+children.+Then+I+hesitate+whether+I+let+the+kid+translate,+in+particular+at+the+
oncology+department.+I+think+that’s+also+a+burden+for+them,+a+child+should+just+be+a+child.+But+there+is+a+
barrier+to+arranging+it,+it+seems+that+family+is+easier.’+(Intv+4)41+
38
Ik%denk%in%zekere%zin%dat%je%niet%heel%anders%begint,%want%ik%denk%dat%alles%wat%je%vraagt%en%zegt%dan%moet%je%een%beetje%pijlen%aan%
iemand%van%hey%hoe%komt%het%over%zie%ik%een%blik%van%herkenning%of%zie%ik%soort%van%een%glazen%blik%van%ik%heb%geen%idee%wat%die%vent%daar%
zegt.%Dus%dat%heb%je%ook%veel%met%laag%opgeleide%autochtonen%dat%je%ook%heel%goed%moet%checken.%(int%4)!
39
Ja,% ik% vraag% altijd% aan% de% patiënt% zelf% of% die% Nederlands% spreekt% en% begrijpt.% Je% let% meer% op% de% patiënt% die% tegenover% je% zit% dan% op%
allochtone%of%nietcallochtone.%Een%gesprek%met%een%oud%iemand%is%ook%heel%anders%dan%een%gesprek%met%een%jong%iemand.%Opleidingsniveau%
of%iemand%medisch%geschoold%is%of%helemaal%niet%maakt%ook%al%heel%veel%uit.%Of%iemand%begrip%heeft%van%statistiek.%Dus%er%zijn%heel%veel%
dingen%waar%je%op%let%om%de%manier%van%uitleg%aan%moet%passen.%En%één%daarvan%is%ook%allochtoon%ja/nee.%(int%5)
40
Ik%denk%dat%wij%af%en%toe%te%bot%en%te%onaardig%overkomen%(int%9)
41
Een%tolk%is%beter,%want%ik%denk%dat%je%dan%een%objectievere%manier%hebt%van%vertalen.%En%soms%ook%weer%met%kleinere%kinderen.%Dan%zit%
je%wel%een%beetje%te%twijfelen%van,%ja%nou%moet%ik%jou%nou%laten%vertalen%en%helemaal%op%de%oncologie%afdeling.%Dat%is%volgens%mij%ook%
belasting%voor%hun.%Je%moet%gewoon%kind%zijn.%Er%is%toch%een%drempel%met%een%geregel,%want%je%merkt%toch%dat%het%makkelijker%is%als%er%toch%
familie%bij%is.%(Int%4)%
26. 26
‘So+it+is+difficult+to+control+and+you+just+ask+it.+I+ask+the+children+if+they+have+translated+what+I+said,+
otherwise+I+will+be+in+a+long+conversation+with+the+children+and+the+parents+will+sit+obediently+without+
having+any+idea+that+there+is+direct+translation.’+(Intv+5)42+
!
An!alternative!for!the!official!translator!is!a!telephone)interpreter!(in!Dutch:!tolken+telefoon),!
however!physicians!are!sceptical:!!
‘Yes,+this+is+also+the+main+reason+that+a+telephone+interpreter+does+not+work.+They+give+just+a+literal+
translation.+I+never+use+a+telephone+interpreter+in+such+consults,+or+at+least+it+has+to+be+an+interpreter+
who+is+actually+in+the+room.+If+that+person+doesn’t+have+medical+knowledge,+it+is+difficult+to+translate+
that+ well.+ A+ translator+ who+ is+ sitting+ across+ from+ you+ can+ feel+ whether+ somebody+ understands+
something+or+not+and+can+adapt.’+(Intv+5)’+43+
‘We+rarely+use+it+in+this+hospital.+I’ve+never+even+used+it+in+my+entire+life.’+(Intv+12) 44
!
Besides!a!translator,!other!tools!can!be!used!to!inform!the!patient.!It!is!repeatedly!mentioned!
by!physicians!that!they!sketch!the!situation,!and!that!other!tools!are!limited!or!too!statistical:!
‘Anyway,+I+often+use+pictures+to+explain+how+the+human+body+works.+If+I+don’t+have+a+picture,+I+sketch+
the+situation+and+show+it+on+paper.’+(Intv+5)+45+
‘We+have+films,+for+example+for+multiple+myeloma+and+that+is+about+the+disease.+Besides+that,+we+have+a+
film+about+the+kidneys,+but+that’s+about+the+treatments.’+(Intv+9)+46+
‘There+is+a+computer+programme+in+which+you+can+fill+in+the+size+of+the+tumor+and+the+characteristics+
of+the+patient+and+the+tumor.+It+shows+the+survival+rate+if+you+are+treated+with+chemotherapy+compared+
to+hormone+therapy.’+(Intv+12)+47+
The!word!‘cancer’!is!sometimes!a!very!hard!word!for!elderly!migrants.!The!family!members!
choose!to!conceal!the!word!‘cancer’!and!prefer!to!use!other!words.!This!can!be!inconvenient!
for!the!physicians.!This!issue!is!mentioned!several!times:!
!
42
Dus%dat%is%moeilijk%om%te%controleren%en%je%vraagt%het%dan%wel.%Dan%vraag%ik%wel%aan%de%kinderen%of%ze%vertalen%wat%ik%zeg,%want%anders%
krijg%je%namelijk%een%lang%gesprek%met%de%kinderen%en%zitten%de%ouders%d’r%braaf%bij%zonder%dat%je%het%idee%hebt%dat%er%één%op%één%vertaalt%
wordt.%(int%5)
43
Ja,%dit%is%ook%de%belangrijkste%reden%dat%een%tolkentelefoon%in%deze%niet%werkt.%Je%geeft%alleen%maar%een%letterlijke%vertaling.%Naja%we%
hebben%tolkentelefoons%die%ik%nooit%in%dit%soort%gesprekken%of%het%moet%een%tolk%zijn%die%echt%in%de%kamer%zit.%Maar%als%die%gene%geen%begrip%
heeft%van%of%kennis%heeft%van%medische%kennis%dan%is%het%soms%lastig%om%dat%goed%te%vertalen.%Vertalen%en%tegenover%je%zitten%dan%kan%
voelen%en%zien%wat%iemand%wel%of%niet%begrijpt%en%dat%daarop%aanpast.%(int%5)%
44
Die%gebruiken%we%in%het%ziekenhuis%zelden.%Ik%heb%'m%zelfs%in%mijn%hele%leven%nog%nooit%gebruikt.%(int%12)%
45
Ik%gebruik%vaak%plaatjes%sowieso%om%uit%te%leggen%hoe%het%menselijke%lichaam%in%elkaar%zit.%Of%ik%teken%het%als%ik%geen%plaatjes%bij%de%hand%
heb%of%laat%zien%op%een%blaadje%en%wijs%het%aan.%(int%5)!
46
De%video%die%hebben%we%bijvoorbeeld%voor%het%type%multiple%myeloom%en%dat%gaat%over%wat%de%ziekte%is.%We%hebben%ook%wel%wat%voor%
de%nieren%maar%dat%gaat%ook%over%een%behandeling.%(int%9)
47
Je%hebt%een%computerprogramma's%waarin%je%kan%laten%zien%als%iemand%is%geopereerd%en%dan%vul%je%de%tumorgrootte%in%met%tumor%
kenmerken%en%kenmerken%van%de%patiënt%en%dan%rolt%daaruit%hoe%groot%de%kans%is.%Als%je%dan%chemotherapie%neemt%hoeveel%procent%je%wint%
en%als%je%hormoontherapie%neemt%hoeveel%procent%je%wint.%(int%12)!
27. 27
‘We+have+patients+whose+children+say,+in+collaboration+with+the+patient+actually:+‘We+prefer+that+you+
do+not+name+the+diagnosis+of+cancer+to+our+mother,+the+patient’.+I+find+that+inconvenient+sometimes.+
But+it+is+their+culture+and+I+respect+it.’+(Intv+4)48!
‘They+say+_yeah,+don’t+mention+the+word+cancer,+because+it+has+such+a+charge’.+Then+you+use+the+word+
_tumor_,+which+is+not+always+malignant+in+their+understanding.+So+you+still+name+it,+but+you+describe+
it.’+(Intv+5)!49!
)
Education!for!physicians!and!other!professionals!also!seems!important:!
‘I+ think+ that+ more+ education+ can+ be+ given+ to+ doctors+ about+ cultural+ differences+ in+ this+ hospital.+
Actually,+we+have+planned+half+an+hour+every+morning+for+education+after+the+patient+transfers.+I+think+
it+ adds+ very+ much+ if+ people+ with+ a+ certain+ social+ background+ or+ people+ who+ know+ from+ their+ own+
experience+and+know+the+medical+world+and+cultural+differences,+and+they+can+tell+you+about+that.+I+
think+it+really+helps.’+(Intv+4)+50+
‘I+think,+professionals+have+to+be+educated+better.+They+don’t+get+any+education+in+their+curriculum+
about+ intercultural+ differences.+ There+ must+ be+ created+ more+ open+ mindedness+ and+ more+ awareness+
about+different+cultures.+We,+in+the+West+are+not+superior,+although+we+mostly+believe+that.+Moral+
deliberation,+ which+ is+ organized+ better+ in+ the+ OLVG,+ or+ clinical+ lessons+ should+ be+ arranged+ more+
frequently’.+(Intv+10)51+
+
+‘There+is+interest.+A+few+years+ago,+we+did+a+survey;+there+is+a+great+need,+certainly+from+the+nurses+
group.+Then,+something+happens,+but+it+also+disappears.’+(Intv+9)+52+
Different!professionals!have!mentioned!the!‘social)antenna’.!This!antenna!helps!health!care!
professionals!to!recognize!cultural!differences!and!also!incorporate!them.!!
‘But+ I+ think+ it+ is+ especially+ important+ that+ your+ social+ antenna+ have+ to+ be+ good.+ And+ that+ you+ are+
aware+ that+ certain+ cultural+ differences+ can+ occur+ and+ that+ you+ are+ alert+ to+ this.+ That+ you+ notice+
someone+understands+something+or+someone+has+been+cautious+when+you+use+the+word+cancer.’+(Intv+
4)+53+
+
48
We%hebben%nu%ook%patiënten%liggen%die%waarvan%de%kinderen%ook%in%samenwerking%met%de%patiënt%eigenlijk%zeggen%van%‘we%willen%
diagnose%kanker%willen%we%niet%dat%je%die%tegen%onze%moeder,%de%patiënt,%vertelt’.%Ik%vind%dat%zelf%soms%wel%lastig.%Dat%is%hun%cultuur%en%dat%
respecteer%ik.!
49
Je%kunt,%dan%zeggen%ze%van%‘ja,%noem%het%woord%kanker%niet,%want%dat%heeft%zo’n%lading’.%Naja%dan%gebruik%je%het%woord%’tumor’%wat%niet%
altijd%kwaadaardig%hoef%te%zijn%en%in%hun%begrip.%Dus%je%noemt%het%dan%wel,%je%beschrijft%het.%(int%5)
50
Ik%denk%ook%dat%van%dit%ziekenhuis%dat%er%ook%meer%onderwijs%gegeven%kan%worden%op%basis%van%cultuurverschillen.%Naar%artsen%toe.%We%
hebben%elke%ochtend%eigenlijk%onderwijs%en%na%de%ochtend%overdrachten%half%uur%is%dat%ingepland.%Ik%denk%dat%het%heel%erg%zal%toevoegen%
als%daar%mensen%met%een%sociale%achtergrond%of%mensen%die%uit%eigen%ervaring%heeft%medische%vak%en%cultuurverschillen%kennen%en%dat%ze%
daarover%kunnen%vertellen.%Ik%denk%dat%dat%heel%erg%helpt.
51
Ik%denk%dat%artsen%en%andere%zorgverleners%echt%beter%opgeleid%moeten%worden.%Ze%krijgen%sowieso%niks%over%interculturele%verschillen%
in%hun%curriculum.%We%moeten%meer%open%minded%zijn%ook%meer%besef%hebben%van%dat%er%verschillende%culturen%zijn%en%dat%dat%niet%fout%of%
verkeerd%is.%Wij%in%het%Westen%denken%nog%wel%eens%dat%we%superieur%zijn.%We%kunnen%bijvoorbeeld%meer%moreel%beraden,%dat%wordt%in%het%
OLVG%al%beter%gedaan,%of%klinische%lessen%zouden%vaker%gehouden%moeten%worden.%(int%10)%
52
Er% is% belangstelling.% We% hebben% een% paar% jaar% geleden% ook% een% enquête% gehouden% er% is% grote% behoefte% ook% zeker% bij% de%
verpleegkundigen%groep%en%dan%gebeurt%er%even%wat,%maar%het%verdwijnt%ook%weer.%(int%9)%
53
Maar% ik% denk% dat% het% vooral% belangrijk% is% dat% je% sociale% antenne% goed% hebt% aan% staan.% En% dat% je% bewust% bent% van% bepaalde%
cultuurverschillen%komen%voor%en%dat%je%daar%vooral%alert%op%bent.%Dat%je%merkt%hey%iemand%snapt%iets%niet%of%iemand%is%al%terughoudend%als%
je%het%woord%kanker%gebruikt.%(int%4)%
28. 28
There! seems! to! be! a! demand! for,! and! also! some! scepticism! of,! a) longer) consult) time) for!
specialised! nurses! who! are! providing! crucial! information! and! an) immigrant) health)
consultant)who!can!be!a!mediator!within!two!cultures:!
+
‘I+think+that+a+consult+should+have+the+double+duration+when+dealing+with+greater+cultural+differences+
or+a+language+barrier.+It+can+not+be+avoided+completely,+but+you+need+more+time.‘+(Intv+4)
54
‘No,+there+is+no+need+for+more+time.+But+sometimes,+you+have+to+make+other+arrangements.+And+that+is+
all+about+the+fact+that+a+person+can+listen+for+max+half+an+hour.+It+is+a+lot.+You+have+to+dose+it.’+(Intv+5)+
55+
‘No,+I+think+that+I+see+them+as+long+as+the+Dutch+patients,+but+we+have+also+the+mama+care+nurses+who+
explain+ a+ lot+ to+ the+ patients.+ They+ have+ one+ consult+ as+ standard,+ but+ maybe+ two+ or+ more+ when+ it+
becomes+too+complicated.’+(Intv+12)+56+
‘Well,+we+do+have+an+immigrant+health+consultant+in+the+hospital,+unfortunately+she+is+ill,+and+she+is+of+
Moroccan+origin,+speaks+Arabic+too.+Besides+the+language,+she+is+also+familiar+with+both+cultures+and+
therefore+able+to+translate.+Not+only+from+me+to+the+patient,+but+often+also+the+other+way+around.’+(Intv+
5)57+
‘Absolutely,+you_re+much+more+on+the+relational+side.+Problems+with+migrant+patients,+like+that+they+
don’t+cancel+an+appointment,+takes+more+time.+There+are+two+things+you+can+do.+It+doesn’t+help+to+say:+
‘you+should+have+been+here+this+morning,+why+were+you+absent’.+Then+you+increase+the+chance+that+
people+don’t+come+anymore.+Since+you_re+on+the+relational+side,+humour+helps.’+(Intv+9)58+
So,!there!is!a!demand!for!longer!consulting!time,!but!that!is!time!that!is!not!available.!And!
that! is! a! problem! that! is! related! with! the! policy! of! the! hospital,! as! one! professional!
mentioned:!!
‘It+just+takes+time+and+that+time+period+is+really+complicated.+Because+you+just+spend+a+lot+more+time,+
time+that+you+simply+do+not+always+have,+on+the+migrant+patients,+and+that+is+not+visible.+My+biggest+
problem+is+time;+if+I+have+a+lot+of+migrant+patients+in+a+day,+my+consulting+hour+just+explodes’+(Intv+
9)59+
54
Ik% denk% dat% een% consult% twee% keer% zolang% moet% duren% als% er% sprake% is% van% of% heel% veel% cultuurverschillen% of% taalbarrière.% dat% niet%
helemaal%te%vermijden%is%door%het%langer%te%maken.%Maar%dat,%je%hebt%gewoon%meer%tijd%nodig.%(nt%4)%
55
Nee.%Je%hebt%niet%meer%tijd%nodig,%maar%af%en%toe%moet%je%een%andere%afspraak%maken.%En%dat%heeft%er%mee%te%maken%dat%je%kunt%nou%
maximaal%een%half%uur%kan%luisteren%en%daarna%is%het%over.%Het%is%zoveel.%Je%moet%het%doseren.%(int%5)
56
Dus%nee,%ik%denk%dat%ze%net%zo%vaak%bij%mij%komen%alleen%we%hebben%natuurlijk%ook%mammacare%verpleegkundigen%die%een%heleboel%
uitleggen.%Die%zullen,%die%hebben%standaard%één%gesprek,%maar%die%hebben%denk%ik%wel%twee%of%drie%gesprekken%als%het%echt%ingewikkeld%is.
(int%12)
57
Nou% we% hebben,% helaas% is% ze% nu% ziek,% een% allochtone% zorgconsulente% in% huis% en% zij% is% dan% Marokkaans% van% oorsprong% spreekt% ook%
Arabisch%in%ieder%geval.%Dat%scheelt,%omdat%zij%naast%de%taal%ook%twee%culturen%kent%en%daarin%een%vertaalslag%soms%kan%maken.%Niet%alleen%
voor%mij%uit%naar%de%patiënt%toe,%maar%vaak%ook%andersom.%(int%5)
58
Absoluut%je%gaat%veel%meer%op%de%relationele%zitten.%Het%helpt%niet%om%te%zeggen%u%had%er%moeten%zijn%hier%vanmorgen,%waarom%bent%u%
niet%gekomen,%ja,%dan%haken%mensen%vaak%af.%Niet%altijd,%maar%vaak%wel.%Omdat%je%op%die%relationele%kant%moet%gaan%zitten%en%vaak%helpt%
humor.%(int%9)%
59
Het%kost%gewoon%veel%tijd%en%die%tijdspanne%is%echt%ingewikkeld.%Want%je%bent%soms%aan%een%allochtone%patiënt%gewoon%veel%meer%tijd%
kwijt%die%je%gewoon%lang%niet%altijd%hebt%en%dat%is%niet%zichtbaar.%Mijn%grootste%probleem%is%tijd,%als%je%veel%allochtonen%patiënten%hebt,%dan%
loopt%je%spreekuur%gigantisch%uit.%(int%9)%
29. 29
A!better!connection!with!the!first)line)care)(GP)!could!be!an!improvement:!
‘I+ have+ the+ idea+ that+ migrant+ patients,+ but+ that+ differs+ a+ lot,+ more+ frequently+ come+ directly+ to+ the+
hospital+instead+of+calling+the+GP.+Hospitals+and+GP’s+don’t+overlap+well.’+(Intv+4)+60+
‘After+ the+ diagnosis+ consult+ with+ the+ oncologist,+ they+ should+ go+ to+ the+ GP+ for+ a+ ‘timeAout’+
conversation.+ And+ the+ GP+ questions+ you+ about+ what+ information+ you+ received.+ What+ are+ your+
emotions?+How+is+it+going+at+home?+What+are+the+questions+you+would+like+to+ask+the+oncologist+next+
time?+If+the+GP+doesn’t+know+the+answer,+they+can+make+a+list.’+(Intv+5)+61+
4.2.3+Negotiation+and+collaboration+
As!a!physician,!you!feel!obliged!to!inform!the!patient!in!the!best!way!possible!and!to!get!an!
informed! consent! on! the! treatment,! which! the! patient! will! follow.! Sometimes! it! is! hard! to!
speak!about!an!informed!consent,!because!the!family!members!have!eliminated!the!informed!
part.!
!
‘You+ want+ to+ inform+ a+ patient+ in+ the+ best+ way.+ But+ you+ are+ not+ able+ to+ tell+ everything+ about+ the+
patient.+He+has+also+the+right+to+know+everything.+But+in+that+case,+an+informed+consent+is+somewhat+
difficult,+ because+ the+ informed+ part+ disappears.+ The+ consent+ you+ can+ get.+ But+ these+ things+ are+ the+
extreme+examples+of+culture+differences.‘ (Intv+4)
62
+
+
‘But+the+clue+is+that+if+you_re+talking+about+shared+decisionAmaking,+that+you+at+least+give+people+the+
feeling+that+they+can+decide.+And+even+if+you+have+to+be+on+a+more+relational+side,+people+have+then+the+
understanding+that+they+can+decide.’+(Intv+9)63
About!the!role)of)the)family!within!the!decision!process:!
‘However,+ you+ have+ to+ go+ very+ far+ in+ the+ wishes+ of+ the+ family.+ Look,+ it+ is+ all+ about+ the+ patient.+
Sometimes+it+is+important+to+trace+the+real+wishes+of+the+patient+himself,+because+sometimes+you+can+
see+that+the+family+is+taking+over.’+(Intv+4)+64+
+
‘Anyhow,+shared+decisionAmaking+is+difficult+in+moments+when+someone+does+not+know+the+language,+
because+then+you+actually+do+the+decision+making+with+the+daughter+or+son.’+(Intv+5)65+
+
‘I+think,+patients+just+agree,+and+do+not+decide.’+(Intv+11)66+
60
dat%ik%het%idee%heb%dat%met%allochtone%patiënten%dat%het%wel%vaak%lastiger%is%om%die%koppeling%met%de%eerste%lijn%goed%te%krijgen.%Dat%dat%
vloeiend%in%elkaar%overloopt.%Dat%is%soms,%ja,%het%wisselt%ook%wel%heel%erg%hoor,%maar%soms%zijn%ze%meer%geneigd%om%naar%het%ziekenhuis%te%
komen%en%het%ziekenhuis%te%bellen.%Dat%het%juist%vaak%beter%is%om%via%de%huisarts%te%gaan.%Dat%die%ook%laag%drempeliger%langs%kan%komen.%
61
Na%zo’n%gesprek%bij%mij%of%bij%een%diagnose%dat%de%patiënt%terug%gaat%naar%de%huisarts%voor%een%timecout%gesprek.%En%de%huisarts%vraagt%
‘’vertel.%Wat%weet%je%dat%er%verteld%is?,%Wat%zijn%de%emoties?,%Hoe%ga%je%daarmee%om?,%Hoe%gaat%het%thuis?,%Hoe%gaat%het%met%deze%dingen%
ongeveer?,%Wat%zijn%de%vragen%die%u%de%volgende%keer%zou%willen%stellen?’’.%Die%stelt%ie%dan%aan%de%huisarts.%Als%de%huisarts%het%niet%weet%
dan%kan%je%samen%de%vragenlijst%maken%en%die%kan%meegegeven%worden.
62
Maar%je%wilt%ook,%en%je%wil%ook%een%patiënt%goed%kunnen%informeren.%Mja%als%je%dan%niet%alles%mag%zeggen%van%de%patiënt.%Die%heeft%ook%
recht%op%niet%te%weten.%Maar%dan%is%een%inform%consent%wat%lastiger,%want%de%inform%is%er%eigenlijk%niet.%Het%consent%kun%je%nog%soort%van%
krijgen.%Ik%denk%dat%dat,%maar%dat%zijn%denk%ik%extremer%van%de%cultuurverschillen.%(intv%4)
63
Maar%de%kunst%is%natuurlijk%dat%je%als%het%hebt%over%shared%decisioncmaking,%dat%je%mensen%in%ieder%geval%het%gevoel%geeft%dat%ze%mee%
kunnen%besluiten%en%ook%daar%als%je%op%de%relationele%kant,%gaat%zitten.%Hebben%mensen%wel%het%gevoel%dat%ze%mee%kunnen%besluiten.%
64
Maar%dat%je%wel%heel%ver%in%die%wensen%van%de%familie%van%de%patiënt%mee%moet%gaan.%Kijk,%de%patiënt,%daar%draait%het%om.%Het%is%ook%
belangrijk%om%soms%ook%achter%te%halen%wat%de%patiënt%nou%zelf%wil,%want%soms%merk%je%dat%de%familie%te%erg%overneemt.(int%4) )
65
Sowieso%is%shared%decisioncmaking%moeilijk%op%moment%dat%iemand%de%taal%helemaal%niet%weet,%want%dan%heb%je%eigenlijk%de%decision%
making%met%de%dochter%of%de%zoon.%(int%5)%
66
Ik%denk%dat%ze%vooral%akkoord%gaan%en%niet%meebeslissen.%(int%11)+
30. 30
!
It!is!mentioned!that!both!the!physician!and!the!patient!have!to!take!their!responsibility.!The!
next!quote!is!about!the!responsibility)of)the)patient.!Migrant!patients!are!more!frequently!
associated!with!laxity!and!that!can!be!a!problem!with!appointments.!!
!
‘It+happens+regularly+that+they+don’t+keep+their+appointment.+I+have+the+feeling+that+some+people+live+
life+ more+ dayAbyAday,+ like,+ ‘I+ feel+ tired+ now+ and+ I+ cannot+ come’+ and+ ‘I_m+ too+ tired+ to+ cancel+ the+
appointment’.+It+also+happens+with+Dutch+people,+but+with+immigrants+much+more+often.+It+is+possible+
that+we+didn’t+inform+them+appropriately+or+that+they+don’t+understand+it’+(Intv+9)
67
Another! very! important! part! of! SDM! is! informing) the) patient.! There! is! likely! a! missing!
element!when!we!speak!about!intercultural!communication,!since!professionals!believe!that!
they!are!doing!enough!to!inform!the!patient,!while!the!patient!does!not!agree.!
‘If+you+look+at+how+we+provide+information,+we+are+perhaps+too+good.+Both+in+writing+as+spoken.+An+
interpreter+is+involved+if+necessary.+Family+gets+involved.+Recall.+Websites+are+specified.+Yeah,+you+
know,+at+some+point+it+stops.’+(Intv+9)+68+
Sometimes,!the!physicians!believe!that!they!have!to!protect!the!patients.!The!next!quote!is!
very!remarkable:!
!
‘I+am+aware+that+I+am+steering.+If+the+patient+is+69,+it+would+be+a+bad+period+for+this+woman;+she+will+
not+finish+the+chemotherapy.+Then+I+focus+more+on+the+fact+that+the+chemotherapy+is+a+heavy+therapy,+
and+leave+the+5+per+cent+extra+survival+rate+in+the+background.+I+mention+it,+but+do+not+dwell+on+it.+
Because+sometimes+you+have+to+protect+patients’+(Intv+12)69
It!is!also!remarkable!that!information!provision!is!only!done!according!to!treatment!option!
and!not!per!cancer!type!and!accompanying!cure.!!
‘Yes,+you+inform,+not+by+cancer+type,+but+by+cure.+You+inform+for+the+treatment.+You+have+different+
types+of+treatments+and+we+talk+about+the+specific+treatments.’+(Intv+9)+70+
!
The! next! quote! illustrates! the! frustration! of! personnel! who! notice! that! projects! are! not!
effectively! addressed! and! that! much! information! is! getting! lost! because! of! the! lack! of!
hospital)policy)and)knowledge)transfer.!
67
Dat%gebeurt%met%enige%regelmaat%dat%men%zich%niet%aan%de%afspraken%houd.%En%soms%heb%ik%het%idee%dat%mensen%wat%meer%met%de%dag%
leven,%ik%voel%mij%nu%moe%en%ik%kan%niet%komen%en%ik%ben%ook%eigenlijk%te%moe%om%af%te%bellen%en%dat%gebeurt%ook%weleens%bij%gewoon%de%
nederlanders%zeg%maar.%Maar%bij%allochtonen%wel%veel%meer.%Die%mogelijkheid%zit%'m%in%dat%we%het%niet%goed%hebben%verteld%of%dat%ze%het%
niet%begrijpen.%(int%9)
68
Als%je%kijkt%hoe%wij%voorlichten,%lichten%wij%misschien%te%goed%voor.%En%schriftelijk%en%mondeling.%Tolk%wordt%zo%nodig%betrokken.%Familie%
wordt%betrokken.%Recall%wordt%zeker%bij%ouderen%ook.%Sites%worden%opgegeven.%Ja,%weet%je%op%een%gegeven%moment%houdt%het%op.%(int%9)%
69
Maar%ik%ben%wel%bewust%dat%ik%zelf%wel%stuur.%Ik%zit%dan%tegenover%die%patiënt%en%ik%denk%ze%is%69,%dan%praat%ik%die%mevrouw,%en%dan%denk%
ik%ja%dat%gaat%dat%wordt%een%rottijd%voor%haar,%ze%gaat%het%niet%afmaken.%Dan%zeg%ik%van%ja,%het%is%toch%wel%zwaar,%dan%dik%ik%dat%aan.%En%dan%
praat%in%minder%over%die%5%%extra%genezingskans%zeg%maar.%Ik%noem%het%wel,%maar%het%is%maar%waar%je%het%meeste%tijd%aanbesteed%aan%wat%
je%aandikt.%Want%je%moet%patiënten%ook%af%en%toe%beschermen%tegen%dingen.%(int%12)
70
%Ja,%je%licht%voor,%niet%per%kankersoort,%maar%per%kuur.%Je%licht%voor%over%de%behandeling.%Je%hebt%verschillende%soorten%behandelingen%en%
die%specifieke%behandeling%daar%vertel%je%wat%over.%(int%9)%
31. 31
‘Well+there+is+too+little+hospital+policy.+I+believe+that+we+should+select+people+before+they+start+in+this+
hospital+according+to+whether+he+or+she+likes+to+work+with+migrants.+So+whether+they+have+a+kind+of+
cultural+ awareness+ and+ affection,+ and+ I+ think+ that+ there+ should+ be+ much+ more+ about+ knowledge+
transfer.+ In+ the+ last+ few+ years+ there+ were+ some+ projects+ but+ then+ it+ disappears+ after+ a+ while.+ Such+
projects+are+really+poorly+picked+up.+The+problem+is+not+sufficiently+brought+out+into+the+open.+It+is+not+
visible+and+when+it+isn’t+visible,+it+will+never+be+solved.+(Intv+9)+71+
!
Many!patients!mentioned!that!they!feel!as!if!they!are!dropped!into!a!jungle,!ocean!or!into!an!
onrushing!train.!One!professional!noticed!something!very!important!about!this!feeling!in!the!
patient:!
‘Of+course,+you+have+to+meet+requirements.+After+an+operation,+within+x+weeks+the+chemotherapy+needs+
to+be+started.+But+if+people+have+metastatic+cancer,+the+chemo+can+easily+start+a+week+later.+And+I+think+
for+shared+decisionAmaking,+and+anyway+in+accepting+the+treatment,+it+is+very+important+that+you+take+
your+time.+And+that+you+take+the+time+to+give+people+the+feeling+that+they+are+stepping+into+a+train,+
which+ is+ rushing+ by,+ but+ still+ have+ the+ time+ and+ feeling+ that+ they+ can+ enter+ calmly+ and+ pack+ their+
luggage+with+them.’+(Intv+9)72+
While! a! surgeon! mentions! that! the! patient! is! in! a! hurry! and! not! the! physicians,! this! can!
suggest!that!many!patients!need!more!explicit!information!in!order!to!decrease!their!fear!of!
cancer:!
‘The+problem+is,+I+always+try+to+brake,+because+the+patient+is+in+a+hurry,+not+me.+The+patient,+if+they+
hear+that+they+are+diagnosed+with+breast+cancer,+they+ask+immediately+when+they+will+be+operated.’+
(Intv+12)73+
! )
71
Nou%ja%er%is%te%weinig%ziekenhuisbeleid.%Ik%vind%dat%je%alle%mensen%die%hier%werken,%moet%selecteren%op%of%mensen%het%leuk%vinden%om%
met%allochtone%patiënten%te%werken.%Dus%een%soort%culturele%bewustheid%en%ook%affectie%hebben%en%ik%vind%dat%er%veel%meer%aangedragen%
moet%worden%in%kennis,%overdracht.%We%zijn%steeds%de%afgelopen%jaren%wat%projectjes%en%dat%verdwijnt%weer.%De%borging%van%dit%soort%
projecten%is%echt%heel%erg%slecht.%Het%probleem%ligt%niet%onvoldoende%goed%op%tafel.%Het%is%niet%zichtbaar%en%op%het%moment%dat%het%niet%
zichtbaar%is,%gaat%het%ook%nooit%opgelost%worden.%(int%9)%
72
Natuurlijk,%moet%je%aan%allerlei%eisen%voldoen.%Zoveel%weken%na%een%operatie%moeten%mensen%starten%met%de%chemotherapie.%Maar%als%
mensen%uitgezaaide%kanker%hebben%kan%dat%best%een%weekje%later.%En%ik%denk%dat%voor%shared%decisioncmaking%en%sowieso%accepteren%van%
de%behandeling,%dat%het%heel%belangrijk%is%dat%je%de%tijd%neemt.%En%de%tijd%neemt%om%de%mensen%het%gevoel%te%geven%dat%ze%ja,%op%een%trein%
stappen%waar%ze%die%voorbij%raast,%maar%dat%ze%wel%rustig%kunnen%instappen%en%hun%koffertje%erbij%te%pakken.%(int%9)
73
Het%probleem%is%een%beetje%dat,%ik%probeer%altijd%een%beetje%op%de%rem%te%gaan%staan%bij,%want%vaak%is%de%patiënt%die%de%haast%krijgt.%Ik%
heb%geen%haast.%Maar%die%patiënt%als%ze%borstkanker%horen,%dan%vragen%ze%eigenlijk%al%wanneer%kan%ik%geopereerd%worden?%(Int%12)
32. 32
5.)Conclusion)and)discussion)
In! this! research! it! was! investigated! which! barriers! and! possible! solutions! exist! for!
implementing!SDM!in!the!oncology!department!of!the!SLAZ!with!regard!to!the!five!main!
essential!intercultural!communication!competences!of!Teal!and!Street!(2008).!A!desk!study!
was!performed!and!health!professionals!and!cancer!patients!of!varying!cultural!backgrounds!
were!interviewed,!resulting!in!noteUworthy!conclusions.!In!general,!SDM!is!a!term!known!by!
almost!all!personnel!in!the!SLAZ.!However,!many!are!not!aware!of!it!and!no!uniformity!or!
protocol! for! SDM! is! apparent.! Education! could! aid! personnel! in! getting! the! skills! and!
awareness!for!SDM.!Furthermore,!variations!in!the!‘social!antenna’!of!health!professionals!
were! identified.! This! antenna! helps! the! health! care! professionals! to! recognize! cultural!
differences! and! also! incorporate! them.! For! example,! patients! from! certain! cultures! have!
greater!difficulty!accepting!a!diagnosis!of!‘cancer’.!!
!
The!greatest!barriers!to!implementing!SDM!with!regard!to!interculturality!can!be!recognised!
among! patients! who! experience! a! language! barrier.! These! patients! are! generally!
accompanied!by!family!members!who!translate!the!information.!This!research!indicates!that!
the! information! transfer! via! family! member! is! not! verifiable! by! the! physician,! which! can!
often! lead! to! misunderstandings.! Despite! the! availability! of! a! telephone! interpreter,!
professionals! rarely! use! these.! Lack! of! emotion! and/or! empathy! is! commonly! cited! as! a!
disadvantage.!The!role!of!the!family!in!intercultural!communication!with!patients!who!have!
a! language! barrier! should! not! be! underestimated,! since! the! communication! occurs! mostly!
between!the!family!member!and!the!professional.!!
!!
This! research! also! indicates! that! patients! experience! high! levels! of! fear! and! anxiety! with!
regard!to!a!diagnosis!of!cancer!and!mostly!accept!the!treatment!plan!of!the!specialist!while!
still! trying! to! overcome! these! feelings! and! process! the! information.! The! lack! of! tools,! like!
leaflets!and!extra!time!for!people!with!a!language!barrier!may!possibly!lead!to!high!levels!of!
patient!ignorance!regarding!the!disease!and!the!treatment!options.!Moreover,!the!role!of!the!
GP! in! information! provision! cannot! be! overlooked.! Lastly,! there! appears! to! be! a! need! for!
more!specialised!personnel,!like!immigrant!consultants!who!can!understand!the!culture!and!
the!language!of!the!patient.!!
5.1.!Reflection!on!the!theoretical!framework!
Teal!and!Street!(2008)!have!identified!five!different!cultural!competences!the!physician!ought!
to! be! aware! of! during! an! intercultural! conversation.! Paternotte! et! al.! (2015)! have! also!
identified! similar! points,! which! have! to! be! taken! into! consideration.! Language! differences!
(verbal!and!non,verbal!behaviour),!differences!in!cultural!perception!of!disease!(Recognition!
of! potential! cultural! differences! and! incorporation! of! cultural! knowledge)! and! the! social!
component! of! communication! (Negotiation! and! collaboration)! are! possible! factors! and!
barriers!that!can!influence!the!intercultural!communication!process!(Paternotte!et!al.,!2015).!
Therefore,!all!these!cultural!competences!are!included!and!considered!in!this!research.!
33. 33
!
Verbal+and+nonAverbal+behaviour.!Reflecting!the!observed!emotion!is!a!part!of!verbal!behaviour,!
while!being!emotionally!involved!during!the!conversation!is!a!nonUverbal!competence.!The!
presence!of!emotion!and!empathy!was!noted!by!all!patients!as!a!significant!prerequisite!for!
trust!between!the!patient!and!the!professional.!The!nurses!were!rated!well!in!this!respect,!but!
the!specialists!received!less!praise!for!their!empathy.!At!the!same!time,!there!is!less!time!at!
the!consult!with!the!specialist!than!with!the!nurses.!Research!has!indicated!that!knowing!a!
few! words! of! the! patientsn! language! is! enough! to! build! a! relationship! and! facilitate! the!
communication!(Brugge!et!al.,!2009).!Furthermore,!according!to!Paternotte!et!al.!(2015)!there!
are! some! skills! that! the! doctor! should! implement! for! intercultural! conversations,! such! as!
making!use!of!attributes!(e.g.!pictures).!
!
This!research!has!found!that!use!of!these!tools!among!physicians!can!be!determined,!but!that!
the! (cultural)! translation! is! lacking.! Leaflets! are! not! translated! into! certain! main! foreign!
languages!and!are!not!easily!available,!e.g.!in!the!waiting!room.!To!remedy!these!lacks,!an!
immigrant!health!consultant!(in!Dutch:!zorgconsulent)!was!hired.!However,!it!is!mentioned!
that! the! consultant! may! suffer! from! a! burnout! due! to! the! overload! of! work,! which! is! a!
reasonable!indication!of!the!great!demand!for!cultural!consultancy!services.!Many!noted!that!
the! health! consultant! plays! a! particularly! important! role,! since! she! is! able! to! translate!
between! cultures.! Physicians! have! emphasized! many! times! that! the! word! ‘cancer’! has! a!
considerable!negative!effect!on!some!migrants!and!that!they!often!have!difficulty!reconciling!
this!with!their!own!values!and!beliefs;!here,!the!health!consultant!can!play!a!crucial!role!in!
improving!understanding!among!cultures.!!
!
Many!patients!are!referred!by!other!specialists!to!the!oncology!department!and!have!already!
received!information!about!their!disease!at!that!stage.!That!may!explain!why!many!tools!in!
the!oncology!department!are!about!treatment!options!without!addressing!the!specific!cancer!
the! patient! has! been! diagnosed! with.! Several! patients! perceived! cancer! as! a! ‘devil’! or!
‘monster’! and! reacted! to! it! with! great! fear.! More! information! provision! about! how! cancer!
develops!in!the!body!may!help!to!decrease!that!fear,!and!may!also!help!patients!adhere!to!
treatment! plans.! Interviews! have! shown! that! lessUeducated! migrants! are! more! likely! to! be!
absent!from!appointments.!Greater!awareness!of!the!disease!could!help!them!to!understand!
the!necessity!of!the!treatment.!!
+
Recognition+of+potential+cultural+differences+and+incorporation+of+cultural+knowledge.!First!of!all,!this!
research!has!found!that!there!are!only!minimal!differences!between!migrants!from!Suriname!
and!native!Dutch!patients!when!compared!with!nonUWestern!immigrants.!The!absence!of!a!
language!barrier!for!Surinamese!migrants!is!a!likely!reason!for!this.!Generally,!intercultural!
barriers!are!more!obviously!present!among!migrants!who!are!less!educated!and!experience!a!
language!barrier.!It!must!be!borne!in!mind,!however,!that!interculturality!is!not!only!about!
different!ethnicities.!A!physician!or!health!professional!can!also!face!intercultural!barriers!in!
