EXPERI ENCI NG THE SI TUATI ON OF BEI NG W I TH CANCER: SOME REVELATI ONS
1Kar ina Machado Siqueir a2 Mar ia Alv es Bar bosa3 Magali Roseir a Boem er4
Siqueir a KM, Bar bosa MA, Boem er MR. Ex per iencing t he sit uat ion of being w it h cancer : som e r evelat ions. Rev Lat ino- am Enfer m agem 2007 j ulho- agost o; 15( 4) : 605- 11.
This art icle aim s t o reveal t he m eaning of being- wit h- cancer t o oncologic pat ient , t rying t o com prehend t hem in t heir living, discerning t he discovery of new ways t o deliver care. This st udy is based on t he qualit at ive r esear ch m et h odology - ph en om en ological m odalit y , r ealized w it h can cer pat ien t s w h o w er e aw ar e of t h eir diagnosis and w er e hospit alized at an inst it ut ion specialized in oncology . Liv ing a ser ious disease lik e cancer reverberat es on t he person’s life in a significant way and affect s his/ her ent ire Being. The physical and psychical rest rict ions deriving from t he disease im ply significant changes, which m ay m ake t he person becom e dependent or w it h dr aw fr om social com pan ion sh ip. Mor eov er , t h e per son su ffer s du e t o fin an cial disar r an gem en t s an d m ay com e across t he need t o int errupt or give up of im port ant life proj ect s. The com prehension of what is lived by t he person wit h cancer indicat es t he relevance of t ransform at ions in t he philosophy of his/ her care, including t he need t o discuss and shar e feelings.
DESCRI PTORS: oncologic nur sing; hospice car e; car e hum anizat ion
EL VI VI R A SI TUACI ÓN DE SER CON CÁNCER: ALGUNAS ELUCI DACI ONES
Est e est udio t uvo com o propósit o revelar el significado de est ar con cáncer para pacient es oncológicos, buscando com prenderlos en esa vivencia y discerniendo nuevos cam inos para el cuidado. Un est udio fundam ent ado en la m et odología de la inv est igación cualit at iv a – m odalidad fenom enológica, fue r ealizado j unt o a pacient es oncológicos, conscient es del diagnóst ico de cáncer, int ernados en una inst it ución especializada en oncología. El vivir de una sit uación de enferm edad grave com o el cáncer repercut e significat ivam ent e en la vida de la persona, afect ando t odo su Ser . Las r est r icciones físicas y psíquicas com o consecuencia de la enfer m edad im plican en cam bios significat ivos y pueden llevar a la persona a quedarse dependient e o apart arse de la convivencia social. Adem ás, sufr e con los desaj ust es financier os y se v e con la necesidad de int er r um pir o desist ir de pr oy ect os im port ant es para su vida. La com prensión de lo vivido por la persona con cáncer señala para la relevancia de t ransform aciones en la filosofía de su cuidado, incluyendo la necesidad de discut ir y com part ir sent im ient os.
DESCRI PTORES: enfer m er ía oncológica; cuidados paliat iv os; hum anización de la at ención
O VI VENCI AR A SI TUAÇÃO DE SER COM CÂNCER: ALGUNS DES- VELAMENTOS
Est e est udo t eve com o pr opósit o desvelar o significado de ser - com - câncer par a pacient es oncológicos, b u scan d o com p r een d ê- los n esse v iv en ciar , v islu m b r an d o a d escob er t a d e n ov os cam in h os p ar a o cu id ar . Est udo fundam ent ado na m et odologia da pesquisa qualit at iv a – m odalidade fenom enológica, r ealizado j unt o a p acien t es on cológ icos, cien t es d o d iag n óst ico d e cân cer , in t er n ad os em u m a in st it u ição esp ecializad a em on cologia. Com pr een de- se, aqu i, qu e o v iv en ciar u m a sit u ação de doen ça gr av e com o o cân cer r eper cu t e significat ivam ent e na vida do Ser. As rest rições físicas e psíquicas decorrent es da doença im plicam em m udanças sign ificat iv as e podem lev ar a pessoa a t or n ar - se depen den t e ou afast ar - se do con v ív io social. Além disso, sofr e com os desaj u st es fin an ceir os e se depar a com a n ecessidade de in t er r om per ou desist ir de pr oj et os im por t an t es par a su a v ida. A com pr een são do v iv ido pela pessoa com cân cer sin aliza par a a r elev ân cia de t r ansfor m ações na filosofia de seu cuidado, incluindo a necessidade de discut ir e com par t ilhar sent im ent os.
DESCRI TORES: en fer m agem on cológica; cu idados paliat iv os; h u m an ização da assist ên cia
Disponible en castellano/ Disponível em língua portuguesa SciELO Brasil w w w .scielo.br/ rlae 1
I NTRODUCTI ON
C
an cer h as af f ect ed an ex p r essiv e p ar t oft he world populat ion and has becom e one of t he m ain ca u se s o f d e a t h . Acco r d i n g t o t h e Wo r l d H e a l t h Or gan izat ion , ov er 1 0 m illion people ar e diagn osed w it h can cer each y ear. Appr ox im at ely six m illion of t h em d ie, w h ich r ep r esen t s 1 2 % of d eat h s in t h e w or ld( 1).
I n Br azil, est im at es f or 2 0 0 6 sh ow ed t h at t her e w ould be 472, 000 new cancer cases, 234, 000 am ong Br azilian m en and 238,000 am ong w om en( 2). Al t h o u g h se v e r a l t e ch n o l o g i ca l a d v a n ce m e n t s i n m od er n on colog y h av e p r ov id ed a b et t er cu r e r at e for m align t um or s, incidence and m or t alit y r at es call t he at t ent ion of public healt h aut hor it ies.
The fact t hat such an ex pr essiv e num ber of people seek healt h inst it ut ions t o t reat m align t um ors should m ak e r esear cher s r eflect ing on t he qualit y of h e a l t h c a r e o f f e r e d t o t h o s e p e o p l e . D e s p i t e concept ually aim ing at hum an dignit y and int egralit y, t he realit y of healt h inst it ut ions reveals t hat , over t im e, t he healt h care process has acquired m erely t echnical a n d r e d u c t i o n i s t c h a r a c t e r i s t i c s . H e a l t h c a r e p r o f e ssi o n a l s o f t e n a ssu m e a n a u t h o r i t a r i a n a n d defensive post ure. Moreover, healt h care act ions seem t o loose t heir originally int eract ive charact er, in which pat ien t s ar e co- r espon sible for m ak in g decision s on t heir healt h.
H e a l t h ca r e sh o u l d r e co v e r i t s e sse n t i a l m eaning, and should be perform ed m ult idim ensionally and involve t he abilit y t o recognize pat ient s as int egral b ein g s. Healt h car e sh ou ld b e ch ar act er ized as an at t it u d e, a w ay of b ein g , an d n ot on ly a t ask t h at t akes place at a cert ain m om ent . As a way of being, h ealt h car e b ecom es a b asic on t olog ical- ex ist en t ial phenom enon and, as a part of t he hum an nat ure and const it ut ion, it r ev eals it s concr et e w ay of being- in-t he- w or ld- w iin-t h- oin-t her s( 3- 4).
Cancer is a disease t hat has hist orically been associat ed t o ex per ien ces per m eat ed w it h su f f er in g and pain, followed by deat h. Due t o t he deat h st igm a involving t he disease, when people see t hem selves in t he world wit h cancer, t hey m ove from t heir everyday exist ence t o a life in anot her world dim ension, in which t he possibilit y of deat h seem s t o be inevit able. Hence, t h ey y ear n n ot on ly f or h ealt h car e r eg ar d in g t h e disease and it s phy sical m anifest at ions, but also for act i on s t h at ex p r ess sol i ci t u d e an d u n d er st an d i n g t oward t heir ill exist ence( 5).
S o c i a l p e r c e p t i o n u s u a l l y r e f l e c t s t h e a sso ci a t i o n o f ca n cer t o a sh a m ef u l f a t a l i l l n ess, co m m o n l y co n si d er ed a sy n o n y m o f d eat h , w h i ch i so l at es p at i en t s an d cu l t i v at es p essi m i st f eel i n g s t o w a r d t h e d i se a se . Co n si d e r i n g t h e h e a l t h ca r e offered t o cancer pat ient s and t he int erest t hat nurses w or k in g at a sp ecialized on colog y ser v ice h av e in offer ing healt h car e t hat t ak es t heir pat ient s’ needs in t o con sid er at ion , t h e p r esen t st u d y p r op osal w as developed: t o reveal t he m eaning of being- wit h- cancer f or on cological pat ien t s, aim in g t o u n der st an d t h eir ex per ience and t o find new pat hw ay s for t he healt h car e t hey ar e offer ed.
T H E O R E T I C A L - M E T H O D O L O G I C A L
FRAMEW ORK
Th i s st u d y i s f o u n d e d o n t h e q u a l i t a t i v e r esear ch m et hod - phenom enological m ode, and w as p e r f o r m e d a t a n i n st i t u t i o n sp e ci a l i ze d i n ca n ce r t r eat m ent , locat ed in Goiania, a cit y in t he st at e of Go i as.
The experience of becom ing ill wit h cancer is a p h en o m en o n w i t h d i f f er en t p ar t i cu l ar i t i es. On l y people w ho live t hr ough t his sit uat ion ar e capable of at t ribut ing t he m eaning of being- wit h- cancer and, t hus, r ev ealin g t h eir ex p er ien ce. Tak in g t h ese f act s in t o consider at ion, t his st udy w as per for m ed w it h elev en oncological pat ient s, aw ar e of t heir cancer diagnosis, who were hospit alized at t he healt h inst it ut ion select ed f or t h e r esear ch d u r in g t h e d at a collect ion p er iod . Pat ient s were int erviewed by one of t he st udy aut hors. Th e n u m b e r o f s t u d y p a r t i c i p a n t s w a s det erm ined by t he dat a sat urat ion crit erion( 6), adopt ed i n q u a l i t a t i v e r e s e a r c h , i n w h i c h i n f o r m a t i o n con v er g en ces an d d iv er g en ces in d icat e w h en d at a collect ion is finished. These convergences are referred t o as invariant s and express t he essence of t he st udy ph en om en on( 7 ).
Th e r esear ch w as d ev elop ed in accor d an ce w i t h t h e r eco m m en d at i o n s o f t h e Nat i o n al Heal t h Co u n c i l , Re s o l u t i o n 1 9 6 / 9 6( 8 ). Th e p r o j e c t w a s approved by t he I nst it ut ional Review Board on Hum an and Anim al Medical Research - Clinics Hospit al at Goias Feder al Univer sit y ( pr ot ocol CEPMHA/ HC/ UFG num ber 0 1 2 9 / 2 0 0 5 ) .
following quest ion: To you, what does it m ean t o exist w it h cancer ? I nt er v iew s w er e per for m ed in line w it h t h e ph en om en ological appr oach , w h ich pr esu pposes a sense of exchanging experiences, in which care and r espect for people should alw ay s ex ist( 9).
Dat a analy sis w as based on t he “ Qualit at iv e Analy sis Met hod of t he Sit uat ed Phenom enon”( 10), in w h i c h f o u r m o m e n t s a r e p r o p o s e d t o a n a l y z e st at em en t s( 6 , 1 0 ). Th ese w er e st r ict ly f ollow ed in t h e pr esen t st u dy.
Fi r s t , a c o m p r e h e n s i v e r e a d i n g o f t h e st at em ent s was perform ed in order t o obt ain an overall m e a n i n g , se e k i n g t o ca p t u r e t h e m e a n i n g s t h a t subj ect s at t ribut ed as well as how t hey at t ribut ed t hose m eanings. Next , a new reading of t he st at em ent s was per for m ed, slow er and m or e car efully, and m eaning u n it s w er e iden t if ied. Af t er iden t if y in g t h e m ean in g unit s in t he st at em ent s, t hey w er e r ead once again wit h t he aim of cat ching t he m eaning t hey cont ained. Fi n a l l y, t h e m e a n i n g u n i t s w e r e s u m m a r i z e d o r cat eg or ized accor d in g t o t h e t h em e, at t em p t in g t o r each t he st r uct ur e or essence of t he phenom enon. Th i s s y n t h e s i s o r c a t e g o r i z a t i o n p h a s e i s a l s o underst ood as t hem at izat ion, which m eans t o st udy a subj ect ser iously and sy st em at ically( 10).
At each analysis m om ent , effort s were m ade t o in cessan t ly qu est ion t h e descr ipt ion s obt ain ed in t he st at em ent s regarding exist ing wit h cancer, aim ing t o under st and t he phenom enon. The com pr ehensiv e analysis of t he st at em ent s m ade it possible t o discover som e aspect s of being- w it h- cancer, accor ding t o t he m ean in g s at t r ib u t ed b y on colog ical p at ien t s, w h ich appoint ed t he essence of ex per iencing t his sit uat ion. Ph e n o m e n o l o g y, a s t h e t h e o r e t i c a l -m et hodological fra-m ework, -m ade it possible t o obt ain experiences of t he Beings wit h cancer. I t was possible t o underst and t hem in t heir exist ent ial sense of being-in - t h e- w or ld- w it h - ot h er s, being-in or der t o appr eh en d t h e essence of t heir exist ence wit h cancer, wit h t heir own e x p e r i e n c e s , m e a n i n g a t t r i b u t i o n s a n d w o r l d per spect iv es as st ar t ing point s.
A s a p h i l o s o p h i c a l m o v e m e n t , ph en om en ology is on e of t h e m ain t h ou gh t lin es in t he 20t h cent ury, which appeared from t he concept ions of Edm und Husser l ( 1859- 1938) and w as dev eloped m ain ly in Fran ce an d Ger m any, by h is f ollow er s( 1 1 ). H u s s e r l p r o p o s e d , t h r o u g h p h e n o m e n o l o g y, t h e “ ret urn t o t he sam e t hings”, t he analysis of essences, under st ood as ideal unit s of m eaning, elem ent s t hat const it ut e t he m eaning of t heir ex per ience( 11).
I n t he pr esent st udy, t he st at em ent s clear ly point ed t o t he issue of hum an ex ist ence, t o fur t her p e r s p e c t i v e s o r l i f e p r o j e c t s , r e d i m e n s i o n i n g exist ence, and, especially, t o t he finit ude issue. These dim ensions r ecall t he philosophical t hought of Mar t in Heidegger, since t hey incessant ly quest ion t he issue of t he Being and deal, fundam ent ally, w it h t he issue of hum an finit ude.
Heidegger con sider s m an as bein g- t h er e or
Dasein, which m eans a being in t he world, being wit h on eself an d w it h ot h er s, w h o sear ch f or t h eir ow n t r u t h t h r ou g h self - in t er r og at ion . Accor d in g t o t h is f r am ew or k , a Bein g can on ly b e d et er m in ed b ased on it s ow n m ean in g , t h at is, it is on ly p ossib le t o underst and t he Being in t he cont ext of it s own world, it s ow n ex per iences( 12).
Besid es t h e ch ar act er ist ic of b ein g - in - t h e-w o r l d , t h e b e i n g - t h e r e i s a b e i n g - t o e-w a r d - d e a t h . Ex ist en ce is n ot g iv en t o m an as a w ell ar r an g ed pat hway in which deat h is at t he end. Rat her, deat h, as a p ossib ilit y, can r u n acr oss m an ’s ex ist en ce at any m om ent . Deat h is under st ood as an inalienable possibilit y of no longer being able t o be pr esent , an ont ological possibilit y t hat Dasein has t o assum e; wit h deat h, t he being- t her e com plet es it s cour se. Hence, d y i n g i s n o t an ev en t ; i t i s a p h en o m en o n t o b e under st ood ex ist ent ially( 12).
Th e s e c o n s i d e r a t i o n s , u n d e r s t o o d a s Heidegger ’s m ain t h ou gh t s, per m eat ed t h e t h ou gh t lines follow ed dur ing t he analy sis of t his st udy. Wit h p h en o m en o l o g y as t h e t h eo r et i cal - m et h o d o l o g i cal f r am ew or k , t h e an aly sis w as or gan ized in t h em at ic cat egor ies. Som e of t he r ev elat ions ident ified in t his st udy ar e pr esent ed below , using fict it ious nam es.
COMPREHENSI VE ANALYSI S
Changes due t o ex ist ing w it h cancer
Changes in life habit s and t he need t o st op doing pleasant t hings are highlight ed as difficult ies in exist ing wit h cancer. Pat ient s report t hat t heir act ivit ies are now rest rict ed t o hom e or hospit al, expressing t heir exclusion from social life: You feel sad because you can’t
share, go out wit h friends, you can’t play soccer. You can’t go t o
t he m ovies because of t he com m ot ion, and when you go t o t he
m all, you wear a m ask or your hair is falling out . ( Rodrigo) ; I t is
hard t o answer t his quest ion, t here are lot s of t hings t hat happen
My life changed a lot , I had t o quit school [ …] I feel I m iss m y
form er life, I don’t feel t his is m e, it is like I st art ed anot her life
aft er cancer, a m ore difficult , m ore painful life. ( Robert a)
Th ese ch an ges m ak e t h e sit u at ion liv ed by Beings wit h cancer m ore difficult , and int ensify feelings of anguish and uncert aint y regarding t heir possibilit ies as Beings. These feelings are associated with the hum an condit ion of “ being- cast ” in t he world, a form of being t hat refers t o t heir own exist ent ial possibilit ies( 12).
Changes in body im age ar e r epor t ed as one of t he m aj or difficult ies faced by people w it h cancer. Pat ien t s r epor t em bar r assin g sit u at ion s, say in g it is difficult t o liv e w it h t he changes ex per ienced dur ing t reat m ent : Now, living wit h t his disease is very difficult [ …] I
had a colost om y and had t o st art using a bag. I was em barrassed,
I ’d never t hought , I had suffered o m uch already and now I had
t o use t his bag. But t hen, slowly, you st art adj ust ing. I t isn’t
easy, we can t ell t he t rut h, right ? I t isn’t easy. ( Luís)
A n o t h e r h i g h l i g h t e d a s p e c t w a s t h e d iscr im in at ion d u e t o p eop le’s lack of in f or m at ion r e g a r d i n g c a n c e r e t i o l o g y, i t s c o m m o n c l i n i c a l m an ifest at ion s an d side effect s of t r eat m en t . Som e pat ient s report psychological and social sufferings due t o prej udice and indifference: I feel t hat people look at m e
wit h indifference, like at school t here was a rum or t hat I had
AI DS. My hair was falling out and I had lost a lot of weight . [ …]
People look at you different ly; t hey t hink it ’s a cont agious disease.
Once I went t o t he m all and sat at a t able, in t he food court , near
t wo girls. My hair was short and I was wearing a m ask, so I was
sit t ing t here and t hey st art ed st aring at m e, t hen t hey changed
t a b l e s. ( Ro d r i g o ) ; No w , o n e t h i n g w e q u e st i o n a l o t i s
discrim inat ion, you arrive at places and people m ove away, you
w ear your m ask, so t hey t hink you’ve had your t eet h rem oved.
When you don’t have hair and you w ear a handkerchief, m any
friends m ove away, so it get s really com plicat ed. Usually, t his
discrim inat ion st ill happens, unt il t oday. ( Crist iana)
Ca n c e r h a s a l w a y s b e e n p e r c e i v e d a s som et h in g em bar r assin g, con t agiou s an d in cu r able; an illness t radit ionally relegat ed by societ y( 13). Cancer can significant ly affect one’s self- percept ion, behavior and social r elat ionships. I n m ost cases, people st ar t being t r eat ed differ ent ly aft er t heir diagnosis.
Social life is im port ant for hum an beings. This ev o k es t h e Hei d eg g er i a n co m p r eh en si o n t h a t t h e b ein g - t h er e is a b ein g - w it h , so it is im p ossib le t o sep ar at e Bein g s f r om t h ose w it h w h om t h ey k eep social r elat ionships. The being- w it h is an ex ist ent ial charact erist ic of t he being- t here, since it is im possible for m an t o exist alone in t he world and not est ablish r e l a t i o n sh i p s w i t h o t h e r s( 4 ). Pa t i e n t s r e p o r t t h a t
sit uat ions like suffering due t o illness, self- care deficit an d depen din g on ot h er s t o per for m daily act iv it ies cause feelings of insufficiency and infer ior it y : I h av e
fait h t hat one day I will get cured and get back t o m y act ivit ies,
be a real m an again because now I don’t feel like a com plet e m an.
Som et im es, t here are days I get so sick t hat I need m y wife’s
help t o t ur n in bed. The disease m ak es us m or e and m ode
debilit at ed, but I ’ll soon recover ( Carlos) ; But for m e it has been
very com plicat ed t o deal wit h t his disease, you know? I t ’s hard
t o have cancer, you feel inferior, like life is really ending ( Mart a) .
Am on g t h e ch an ges ex per ien ced by can cer pat ien t s, t h e im possibilit y t o w or k w as r epor t ed as som et hing t hat int im idat es and excludes. Work is one of t h e w ay s in w h ich h u m an s ex p r ess an d id en t if y t h em selv es an d becom e f u lf illed as a bein g- in - t h e-w o r l d . Ph y si ca l i n ca p a ci t y t o p e r f o r m d a i l y e-w o r k act iv it ies cau ses f eelin gs t h at r edu ce t h e qu alit y of t heir exist ence: But I pray t o God t hat soon He will cure m e
and I can go back t o doing what I did before, because I had a
dangerous j ob, but I liked it . ( Carlos) ; My life changed a lot aft er
t his disease. Now, even if I get bet t er I won’t be able t o work wit h
t he cat t le like I did before. I ’m recovering st ep by st ep, but I
can’t go back t o working wit h t he cat t le like I did before. I ’ll have
t o change m y life radically, I ’ll have t o m ove t o t he cit y [ …] and
t ot ally change t he rhyt hm , right ? I ’ll have t o, I don’t know, buy
and sell clot hes, because I don’t have m uch educat ion, right ? I ’ll
have t o t ry t o live som e ot her way. ( Eduardo)
Besides t he lack of personal fulfillm ent t hrough work, financial difficult ies due t o being away from work worry people, especially during t reat m ent , m ainly t hose w hose fam ilies financially depend on t hem : I t is really
hard not t o work knowing t hat your children need your support .
I t ’s a good t hing m y wife also helps at hom e, she works in t he
clot hing indust ry, t he wage is low, but it helps. ( Paulo) ; I ’m not
working and at hom e nobody works, nobody is em ployed, we live
wit h a very low incom e. Act ually, if I found som eone t o help m e get
ret ired it would be really nice. What m akes it difficult is t hat I
need t o work and I can’t [ …] There’s no way I can work, I lost m y
appet it e, I feel weak, even pain som et im es. ( Luís)
I n a capit alist societ y, t he inabilit y t o w or k , provide for one’s own needs and keep one’s fam ily in g o o d f i n a n c i a l c o n d i t i o n s m a k e s h u m a n s f e e l disposable, a dependant - being w it h no aut onom y, a body t hat no longer m eet s t he pr oduct iv e dem ands of a consum er ist societ y( 14).
Ex ist ing w it h cancer : ex per iencing fear and suffer ing
closer wit h t hese people perm it t ed underst anding t hat t he disease causes r eper cussions in Beings’ liv es as a w h o l e , a n d n o t o n l y r e g a r d i n g t h e i r b e i n g - i l l . Experiencing fear and suffering becom es part of t heir hum an exist ence, and im pairm ent s due t o t he disease becom e, ov er t im e, m or e oft en and disabling.
One of t he m aj or fears and difficult ies cancer pat ient s face is t he experience of physical pain. Beings wit h cancer recall pain as som et hing t hat causes m uch p h y sical su f f er in g an d t h at can cau se sit u at ion s of ex t r em e psy ch ological im balan ce, w h ich cou ld ev en lead t o suicide: I n t he beginning m y leg hurt t oo m uch, and I
t ook m edicat ion and it wouldn’t help. So I would j ust st ay in bed,
com e t o t he hospit al and go back, used a wheel chair [ …] I t was
when m y knee hurt so m uch t hat I j um ped ( at t em pt ed suicide)
because t he knee hurt j ust t oo m uch, you know? I would bang m y
head on t he floor, bang hard, because of m y knee pain, it really
hurt , you could see m y knee swelling, as if it would explode
inside m e ( Gabriela) .
Suicide at t em pt s reveal t he inabilit y of Beings t o bear t he overload of living wit h such a serious and disabling healt h pr oblem . Suicide is one of t he m ain causes of deat h am ong young adult s, and t hough it is st u d ied all ov er t h e w or ld , it st ill r em ain s a m aj or e n i g m a f o r sci e n ce s t h a t st u d y h u m a n b e h a v i o r. How ev er, f r om t h e Heid eg g er ian p er sp ect iv e, it is
Dasein’s wish t o no longer be t here- in- t he- world, and t h is u n der st an din g can be a w ay of r ebu ildin g an d r edim ensioning t heir ex ist ent ial per spect iv es( 15).
I n s e v e r a l c a s e s , t h e p r o p o s e d c a n c e r t r eat m ent pr ocedur es becom e aggr essiv e and cause or ganic side effect s. Pat ient s r ecall chem ot her apy as a difficult t r eat m ent , due t o t he side effect s caused b y c h e m o t h e r a p e u t i c a g e n t s : B e c a u s e b e f o r e
chem ot herapy, I felt OK, I only had j oint pain. Aft er I st art ed
chem ot herapy, I st art ed feeling really sick, I felt pain, fat igue,
t iredness, I felt a lit t le rej ect ed because I couldn’t have visit ors
because t he doct or did not allow m e t o have visit ors at hom e
( Rodr igo) ; Now t h e h ar dest t h in g is ch em ot h er apy , in t h e
beginning, t he first t im es, fourt h session I t hink, I t hought of
giving up. I t hought I wouldn’t handle it , t hat I would die if I
cont inued ( Mart a) .
Wh ile t h ey ack n ow led g e an d su f f er d u e t o t he side effect s of t reat m ent , pat ient s em phasize t he im port ance of chem ot herapy in t heir quest t o becom e again a Bein g w it h ou t t h e disease( 1 6 ). The follow ing st at em ent s express pat ient s’ awareness regarding t he need for chem ot herapy: [ …] I n t his final session I ’m feeling
a lit t le bet t er, I t ook som e m edicat ion for st om ach sickness and
I didn’t vom it so m uch. My appet it e is st ill bad and I don’t like t o
eat anyt hing, I have lost all t he pleasure regarding food. I used
t o eat well, but chem ot herapy really wears you out . But you have
t o do it , right , t here is no ot her resource ( Robert a) ; Som et im es I
w or r y about t hese r eact ions, afr aid I m ight have t o quit t he
t reat m ent , so I t ry hard not t o be sick. Because I know t hat , if I
st op, it can m ean I ’ll die because of t his disease and I really don’t
want t o die ( Luís) .
Ma n y c h e m o t h e r a p e u t i c a g e n t s c a u s e a cyt ot oxic effect on hair bulb cells, w hich affect s t heir rapid proliferat ion and part ially or t ot ally inhibit s t heir m et abolism and m it ot ic act iv it y, w hich w eakens and causes hair loss( 17).
Hair loss w as r epor t ed as on e of t h e m ost r e l e v a n t s i d e e f f e c t s i n t e r m s o f t h e i m p a c t o f t r eat m en t in pat ien t s’ liv es. Th eir self- per cept ion is t h at of an u gly per son , differ en t fr om t h e on e t h at ex ist ed b ef or e t h e d isease, an d on e t h at d oes n ot m eet so ci al b eau t y st an d ar d s, cau si n g si g n i f i can t psy ch ological an d social r eper cu ssion s in t h e life of beings- w it h cancer going t hr ough chem ot her apy : The
hardest part is t he hair because you feel em barrassed around
ot her people, I had really long hair, it was beaut iful and now it is
short and t hin. I som et im es st op chem ot herapy and it st art s
growing, but soon I go back and it falls out again. I know it isn’t
im port ant considering t he seriousness of t he disease, but it ’s
som et hing t hat t roubles m e, m akes m e feel ugly, em barrassed,
upset ( Robert a) .
Th ou gh it is n ot a clin ically sign if ican t side effect , som e pat ient s consider chem ot her apy - induced hair loss as one of t he m ost devast at ing side effect s of t r eat m ent . Alopecia can hav e negat iv e effect s on o n e ’ s b o d y i m a g e , c a u s i n g m u c h s u f f e r i n g a n d changing int erpersonal relat ionships and social life as a whole( 16- 17).
Th e f e e l i n g o f f e a r t o w a r d d e a t h i s e x p e r i e n c e d a t t h e m o m e n t o f d i a g n o s i s a n d a cco m p a n i es b ei n g s- w i t h - ca n cer t h r o u g h o u t t h ei r coping wit h t he disease. Deat h is t he m ost fright ening fact in life, which no one can cont rol or predict( 12). I n t he present st udy, t he fear of deat h was report ed by p eop le w h o w er e u n ab le t o m ak e lif e p r oj ect s lik e s e e i n g t h e i r c h i l d r e n g r o w , m e e t i n g t h e i r g r an d ch ild r en an d en j oy in g t h eir r et ir em en t . Som e st at em en t s ex plicit ly pr esen t ed t h e fear of deat h : I
had depression before, but it got worse aft er I was diagnosed
wit h cancer… because t hen you feel t he t hreat of dying, so it
worsens. You t hink t hat cancer and deat h are t he sam e, I t hought
t h at w ay , ev en som e h ealt h p r of ession als t h in k t h at w ay
( Gabriela) ; But I ’m st ill afraid, I ’m afraid of t he t ransplant , because
[ …] At t he m om ent of bone m arrow infusion, I kept t hinking: m y
God, am I dying t oday? ( Crist iana) ; But I knew t hat I needed t o
operat e, so I t hought : eit her I loose a part of m e or I loose m y life,
because cancer really kills you if you don’t t reat it [ …] I ’m not
ready for deat h, you know? I ’m afraid of dying because I don’t
t hink it ’s t im e. I don’t have any grandchildren yet and I really
want t o m eet m y grandchildren ( Lúcia) .
From t he fundam ent al const it ut ion of Dasein, t h e d e a t h p h e n o m e n o n i s r e v e a l e d a s a b e i n g -t ow ar ds- -t he- end. I -t is an on-t ological possibili-t y -t ha-t
Dasein has t o assum e, configur ing it as a possibilit y of no longer being able t o be present( 12). I n t his sense, t he deat h phenom enon is no longer seen as a m er e e n d o r d i s a p p e a r a n c e ; i t a s s u m e s i t s h u m a n ex ist en t ial ch ar act er ist ics.
D e s p i t e t h e a d v a n c e m e n t s i n c a n c e r t reat m ent , pat ient s report t hat t he fear of recurrence i s so m e t h i n g t h a t w o r r i e s a n d ca u se s su f f e r i n g . An g u ish is associat ed w it h t h e f ear of t h e d isease r et ur ning and causing deat h, and is char act er ized by not k now ing w hat is fear ed or causes t hat anguish. Wit h anguish, what t hreat ens t he Dasein or t he Being’s ex ist ence is som et hing t hat is now her e, is unfam iliar w it h t heir ev er y day life, and is unex pect ed( 12).
The fr agilit y due t o t he possibilit y of r elapses causes m om ent s of m uch anx iet y. Som e st at em ent s show t hose feelings: But w hat can I do? I k now I hav e t o go
on or I ’ll die, t his disease w ill t ak e m e. That ’s w hy I cont inue.
[ …] I r eally w ish t o see t hem m ar r ied, w it h childr en, but I ’m
afraid t hat won’t happen. I know t hat even t reat ing it , t he disease
can r et ur n, so I ’m scar ed ( Mar t a) ; The m ost difficult t hing of
t his disease is not k now ing w hen y ou’ll get r id of it or if it w ill
r et ur n. This fear of r et ur ning is difficult , I t w or r ies us a lot
( Paulo) .
I m por t ant t hought s r egar ding Being- ill r ecall t hat t he disease causes an aggr ession, a solut ion of cont inuit y bet ween t he form er and t he present living, m aking t he fut ure uncert ain( 18). This uncert aint y is part of everyday life and worries especially t hose who are ill wit h a serious disease like cancer. There is a present f ear of n o lon ger liv in g lik e t h ey u sed t o or of n ot ov er com ing t his m om ent , w hich causes feelings t hat reduce t he exist ent ial qualit y of Being of people w it h can cer.
Wh en h eal t h p r o f essi o n al s l i v e w i t h t h ese people and com e closer t o t hese feelings, t hey should r ecov er t he or iginal m eaning of healt h car e, a w ay -o f - b e i n g w i t h s -o l i c i t u d e , w h i c h p e r m i t s s h a r i n g e x p e r i e n ce s a n d cl a r i f y i n g p a t i e n t s’ d o u b t s a n d uncer t aint ies, w hen possible.
FI NAL CONSI DERATI ONS
Accor d in g t o t h e Heid eg g er ian f r am ew or k , m an is t h e on ly bein g capable of r ef lect in g on an d q u e st i o n i n g h i s Be i n g . Me n m a n i f e st t h e m se l v e s t h r ou gh speech ; it is t h r ou gh t h eir ow n st at em en t s t h at m en r ev eal t h e m ean in g of h u m an b ein g an d ex ist in g.
Though a difficult t ask, people who t ook part in t h is st u dy agr eed t o descr ibe t h e m ean in gs t h ey at t r ibu t e t o t h eir disease sit u at ion . Hen ce, t h r ou gh t heir st at em ent s and non- verbal com m unicat ion, t hey co- part icipat ed and allowed for a bet t er underst anding of t he phenom enon exist ing w it h cancer.
As soon as Beings face t he realit y of exist ing w it h a ser iou s d isease, sev er al ex ist en t ial p r oj ect s t end t o be annulled or changed by t he ex per ienced sit u at ion . Ev er y d ay act iv it ies b ecom e com p r om ised and phy sical im pedim ent s cause significant changes, which can lead t o dependence in several aspect s. The pr esent st udy show ed t hat , fr om a new per spect iv e, Being ill wit h cancer prom ot es a new direct ion t o one’s life; how ev er, t hose changes ar e not easy or want ed by t he Being.
Th e p r e s e n t s t u d y p e r m i t t e d t o b e t t e r u n der st an d t h e life- w or ld of can cer pat ien t s. A fact t hat called special at t ent ion was t hat , during t he st udy, pat ient s r epor t ed being discr im inat ed against . I t w as obser v ed t h at can cer, as a r ealit y, can af f ect on e’s self - per cept ion an d beh av ior r egar din g on e’s social r elat ion sh ip s.
Besides t h e n u m er ou s su ffer in gs cau sed by t h e disease, t h e st igm a t h at st ill in v olv es can cer is responsible for t he cont inuing prej udice t hat increases suffer ing and int ensiv ely ex haust s hum ans.
D e s p i t e t h e a d v a n c e m e n t s i n c a n c e r t r eat m en t , it w as ob ser v ed t h at t h e f ear of d eat h accom panies pat ient s w hen coping w it h t he disease. Moreover, t he possibilit y of recurrences was highlight ed i n t h e st at em en t s as so m et h i n g t h at w o r r i es an d causes suffer ing. Anguish is associat ed w it h t he fear of t he disease r et ur ning and causing deat h.
o f f er ed t o o n co l o g i cal p at i en t s, b y r eco v er i n g t h e aut hent ic m eaning of healt h car e act ions.
The com pr ehension of w hat cancer pat ient s ex p er ien ce in d icat es t h e n eed t o d iscu ss f eelin g s, sh a r e p a i n s, so r r o w s a n d p r eo ccu p a t i o n s, r el i ev e t ensions caused by a sit uat ion filled w it h uncer t aint y a n d f e a r. Ca r i n g f o r p e o p l e w i t h ca n ce r i m p l i e s d ev elop in g t h e sen sit iv it y t o p er ceiv e p at ien t s an d co n si d e r t h e i r f r a g i l i t y a s p e o p l e a w a r e o f t h e i r
sit uat ion and who need specific care in t erm s of t heir ex ist ent ial dom ain, and not only t heir phy sical body. H e a l t h c a r e p r o f e s s i o n a l s n e e d t o t a k e r e sp o n si b i l i t y f o r ca r e w i t h so l i ci t u d e , g u i d e d b y considerat ion and pat ience, and founded on t hese t wo w or ds’ sense of t em poralit y. Considerat ion r efer s t o t he solicit ex per ience look ing at t he past , at for m er ex p er ien ces, an d p at ien ce is t h e solicit ex p er ien ce looking t owards t he fut ure, t o what is yet t o com e.
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