emoonal support during chemo · • uncertainty. li l et al. (2017) prognostic values of eortc...

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Emo$onalsupportduringChemo

PazFernández-Ortega.PhD,MSc,RN,BPsychChairofEduca9onMASCCSG

NursingResearchCoordinator.Ins4tuteCatalàd’OncologiaBarcelona-Spain.Mail:mfo@iconcologia.net

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Emo$onalsupport

Mul$dimensionality

Inten$on&percep$on

Specialsitua$ons

Whoisatrisk

Toolsandbestinterven$ons

Takehomemessage…

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

MULTIDIMENSIONAL NEEDS

MULTIDISCIPLINARY APPROACH

SOCIAL WORK

ONCOLOGY

RESEARCH

PALLIATIVE CARE

NUTRITION

RADIOTHERAPY

PHARMACIST

CANCER NURSES

Psychological

BiologicalSocial-spiritual

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Chemotherapy intention always is/ should be to bring benefit to patient

Effec$vity Subjec$ve-cogni$vepercep$onbenefit/nonbenefit

But,howpa$entsperceivethis?Signalscomingfromprofessionals,nurses&family-caregivers

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Outcomes & benefit perceived for patients

Effec$vity Subjec$ve-cogni$vebenefit/nonbenefit

RigorEvidence-based

protocolsProfessionalcompetencies

-AKtudes-Empathy

Pa$entsgetsignalsfromProfessionals,nursesandteam

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Whatisemo$onalsupport

•  Emo$onsrefertofeelingsinpre-chemotherapy–  Feelingsasfear,fustra$on,guilty…

Pa$entsneed:•  Receivetreatmentinforma$on•  Receiveinstrumentalinforma$onand..•  Receiveaffec$veinforma$on

•  Some$mesoneissubs$tu$ngtheotherBalancingall..

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Majorityofpa$entsreceivingChemotherapy;AdjuvantorPallia$veand/orinclinicaltrialsPhaseI•  Situa$onofsuffering•  Threateningsitua$on•  Lossofcontrol•  Impactsitua$on•  Feelingofdespair•  Fear•  Doubts•  Difficul$esforcommunica$on•  Difficul$estokeeptheaMen$on

Vulnerabilitysitua$on

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Whoisourpa$ent?

ALL THEM ARE INCLUDED IN THE SITUATION!!!

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Physical needs interrelation:•  Symptoms more prevalent: asthenia, anorexia and

loss of weight…

•  Refractory situation of distress also causing 41-55% of cases.

•  Complex lesions: external lesions, hemorrhagic, infections, odor…

Consider high complexity if: •  Low adherence in previous treatments •  Difficulty in medications management •  If using devices as pumps

Advancedoncologynursepa$entevalua$on

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Physical needs, interrelation:

•  High nº symptoms + high intensity

•  High toxicity •  Low adherence •  Repetitive - hospitalization •  Patient age •  Emergencies situation •  Ending active treatment

Symptoms more prevalent: asthenia, anorexia and loss of weight… Refractory situation of distress also causing 41-55% of cases. Complex lesions: external lesions, hemorrhagic, infections, odor… Consider as high complexity if: •  Low adherence in previous treatments •  Difficulty in medications management •  Lack of supportive medications ++ •  If using devices as pumps or

nasogastric or other

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Psychological needs Emotional suffering is the result of adaptation to difficulties.

•  It is a cognitive state •  Prognosis predictor. * •  with a sense of threat for the personal integrity •  feeling of impotence -predestination •  lack of personal and psychosocial resources to cope •  feelings of loss of control •  hopelessness •  uncertainty.

Li L et al. (2017) Prognostic values of EORTC QLQ-C30 and QLQ-HCC18 index-scores in patients with hepatocellular carcinoma clinical application of health-related quality-of-life data. BMC Cancer.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Psychological needs

Somedata:•  Psychologicalproblems(12–85%)•  Informa$on(6–93%)•  Socialproblems(1–89%)•  Spiritual(14–51%)**•  communica$on(2–57%)•  Sexualityneeds(33–63%) * Harrison JD (2009) What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 17:1117–1128

**Jimenez-FonsecaP.2018Themedia$ngroleofspirituality(meaning,peace,faith)betweenpsychologicaldistressandmentaladjustmentincancerpa$ents.SupportCareCancer.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

High level of distress •  High demand of attention •  Low demand of attention Meaning of the treatment How patient use his coping strategies Emotional and spiritual resources Recent cases in same family Degree of threat perceived Higher risk personality disorders & history of psychiatric illness.

Psychological needs Emotional suffering is the result of adaptation to difficulties. Do professionals check adaptation??

Advancedoncologynursepa$entevalua$on

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Social - Family needs •  Living conditions and environmental. •  Role, relationships, family dynamic, relations in family. •  Self-care practices •  Values, beliefs and practices •  Resources and organization for care •  Financial and economic impact of disease

COMPLEXITY CRITERIA: –  caregiver claudication for caring –  increase burden of care –  not cover the caregiver needs –  lack of support

Advancedoncologynursepa$entevalua$on

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Which are patient ‘s expectation of chemo?

Mo$va$on&benefitexpectedforchemo.-Istheremanypossibili$es?-Isonlythe“lasthopeforpa$ent”??

Thereisdiscordancebetweenpa$entfamily

Solidaritywiththehumanbeing.Altruism

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

•  Personalizedrela$onship•  Informa$onreceived•  Shareddecisionsontreatment•  Proves&complementarytests•  Experienceofinclusion/exclusion•  Proximitytotheteam•  Adjustedexpecta$ons•  Side-effects•  Accessibilityincaseofdoubts•  Percep$onofmeaning(legacy)

What aspects can influence subjective perception patient/family during chemo or Clinical Trials?

Pa$ent-Family

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

•  Sa$sfac$onwithemo$onalsupport– Defini$on:theextenttowhichpa$entsfeeltheyreceivehelptocopewithemo$onsandstress/distress– Stress-distressincreaseduringChemo

Whatpa$entstellusabout?:

Brandes K, et al. Understanding the interplay of cancer patients' instrumental concerns and emotions. Patient Educ Couns. 2017;100(5):839-845.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Exis$ngtools?:Sometoolsarepurelyinformingorprovidinginforma$on–sotheyareaMendingpa$ents’informa$onalneeds.

–  Mostfocusinsymptoms,notalwayscoveremo$onalneeds..–  Best:balancingtheinstrumentalissueswiththeemo$ons

Toolswithaholis$cperspec$ve:•  CHEMOSUPPORT–2018OncologyNursingForum,Coolbrandtetal.•  Short-FormSuppor$veCareNeedssurvey(SCNS-SFM)*•  Effec$vefollow-uppostChemotherapy;Internet,video**,phone

calls,APP,pa$entsgroupseduca$on,expertpa$ent…

*BoyesA,(2009)Briefassessmentofadultcancerpa$ents’perceivedneeds:developmentandvalida$onofthe34-itemSuppor$veCareNeedsSurvey(SCNS-SF34).JEvalClinPract.

**KinnaneN.(2008)Evalua$onoftheaddi$onofvideo-basededuca$onforpa$entsreceivingstandardpre-chemotherapyeduca$on.EurJCancerCare.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Case:MaríaAndchemotherapy…

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

María...•  Ms.Misan77year-oldwomanrecentlydiagnosiswithstageIVPancrea$cCancer.

•  Shehadremainedingreathealthun$lherrecentdiagnosis,ajerwhichherenergyhadplummetedandshewasspendingover50%dayinsofa-bed.

•  Overwhelmedwiththesightoftheirlovedonelosingherstrengthwitheachpassingday,herfamilyhadgoneintopanic.–  “Couldn’tthedoctorssaveherfromthiscancer?”–  “Chemotherapyhashelpedsomany,right?”–  “Weneedtotrysomething,doctor!”

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

María...•  Thepa$entherselfwasdetachedfromtheideaofbaMlingthedisease:–  “Ihavelivedagoodlife,”shewouldsay,andtakeapassivedistanceinhertreatment/illness.

–  Thisaotudefurtherdistressedthefamily:“itislikesheisgivingup.”

– Uponrequestofthecancernurse,oncologistevaluatedthepa$entandtookthe$metodiscusstreatmentop$ons.

•  Theonlyremainingop$onwaschemotherapySurgerywasnolongeranop$on,andradiotherapywasnotgoingtobepar$cularlyuseful.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Maria...•  Pa$entandfamilywerereluctantanddidnotknowwhatchemotherapyreallymeant.– Wouldbeusefulaninforma$vepamphletofthepoten$alchemotherapeu$cdrugs…...

–  Pamphletexplains:“Nephrotoxicity,neurotoxicity,thrombosis,rash,edema,riskofbleeding…”

–  Familylongdiscussions:-  chemotherapyisgoingtomakehersuffermore!”-  “sheisnotgoingtogiveuplikethis!”-  “ifnotchemotherapythenwhat?!”

•  AND….“whatifchemotherapysavesherlife?!”

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

NowChemoand….???

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Someuseful$ps:•  Sit,don’tstand:samelevelaspt.

• Makeeyecontact.Nottocomputer

•  Listencarefully:compassionatepresence.

• Useplain,non-medical• Usethepa$ent’swords.•  Slowdown:Speakclearlyandmoderatepace.

•  Limitandrepeatcontent:3-5keypointsandrepeatthem.

•  Askpa$entstorepeatajertheinforma$ongivenhislanguage

•  Bespecificandconcrete:Don’tvague•  Showgraphics:picturesorillustra$ons,•  Includefamilymembersindiscussion.•  Demonstratehowit’sdone.Demonstra$on•  Invitepa$entpar$cipa$on:

−  “Whatques$onsdoyouhave?”or“Wediscussedalotofinforma$on.Whatcanwereviewagain?”

−  Don’t:“Doyouhaveanyques$ons?”−  Elicitques$onsfrompa$entsseveral$mesduringanofficevisit.

•  Showthatyouhavethe$me:•  Helppa$entspriori$zeques$ons.longlist•  Remindpa$entstobringques$onswiththemtoappointments.

Includefamilymembersindiscussion.Demonstratehowit’sdone.Whetherdoingexercisesortakingmedicine,ademonstra$onofhowtodosomethingmaybeclearerthanaverbalexplana$on.Invitepa$entpar$cipa$on:Encouragepa$entstoaskques$onsandbeinvolvedintheconversa$onduringvisitsandtobeproac$veintheirhealthcare.

Say“Whatques$onsdoyouhave?”or“Wediscussedalotofinforma$on.Whatcanwereviewagain?”(open-ended)

Donotaskpa$ents,“Doyouhaveanyques$ons?”(close-ended)

Elicitques$onsfrompa$entsseveral$mesduringanofficevisit.

Showthatyouhavethe$me:Beconsciousaboutpresen$ngyourselfashaving$meandwan$ngtolistentotheirques$ons.Helppa$entspriori$zeques$ons.Ifpa$entshavealonglistofques$ons,helpthemdecidewhichonesaremostimportanttoaddressatthisvisit.Havethemscheduleanothervisittoaddresstherestoftheirques$ons.Remindpa$entstobringques$onswiththemtoappointments.Encouragethemtoaskques$onsinotherhealthcareseongs.

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

hlp://www.helphurlool.com/

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Takehomemessage…

•  Chemotherapycontext+distress–  Mul$dimensionality-mul$profesionals–  Momentsthatincreasecomplexity-firstcycle–  Personsmorevulnerable;older,migrants,pallia$ve,adolescents–  Relapse;second-3rd-4thline.ClinicalTrial-Finishtreatment

•  Baselineassessmentisagoodpredictorofpostsurvivalandmorbidity–  Professionalsbeingalertonsignsfordistress–  Beingalerttocomplexity–  Cogni$vemeaningaMributedtoChemo–  Toolsandreferraltoexpertprofessionals

PazFernándezOrtegaPhD,MSc,RN.Educa9onSG

Thanks!

Ques$ons?Sugges$ons?Discussions…