anticipatory grief 7819 (1)

8/16/2019 Anticipatory Grief 7819 (1)

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Anticipatory Grief 1

Running Head: ANTICIPATORY GRIEF

Caregiver

and

Anticipatory Grief

Ro!anne "# Fran$%in

Augu t 1&' &(()

*+ ,-.: /eat0' /ying and Grieving

Prof# a2ie 3oudreau!

Tu%ane 4niver ity *c0oo% of *ocia% +or$


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Anticipatory Grief &

Introduction:

Fa2i%ia% caregiver dea% 5it0 t0e day6to6day rea%itie of caring for t0eir dying %oved

one # T0eir a7i%ity to cope 5it0 t0e de2and of caring for t0eir %oved one i great%y i2pacted

7y t0e upport t0ey receive fro2 ot0er fa2i%y 2e27er ' friend and re ource in t0e

co22unity# According to t0e 4#*# /epart2ent of Hea%t0 and Hu2an *ervice 8199) ' current

e ti2ate revea% t0at appro!i2ate%y .& 2i%%ion A2erican erve a fa2i%y caregiver for an i%%

or di a7%ed adu%t 8a cited in ;angan' Tay%or' Ya7roff' F%e2ing' < Ing0a2' &((=' p# &-, #

+it0 t0e >3a7y 3oo2er? generation reac0ing o%der age' t0e e nu27er are e!pected to

continue to ri e rapid%y in t0e co2ing year # *tudie 0ave docu2ented t0e p0y ica%' financia%

and p yc0o%ogica% 5eig0t t0at i re%ated to caregiving' 50i%e tating t0at t0e e 7urden

increa e a t0e end of %ife 7ec$on 8;angan et a%#' &((= # T0e e tudie 0ave a% o found t0at

t0e need of caregiver continue to 7e un2et 8;angan et a%#' &((= # T0i paper focu e on t0e

e2otiona% i2pact t0e i2pending deat0 0a on caregiver @ pecifica%%y' t0e concept of

anticipatory grief and t0eir a7i%ity to cope during t0e period 7efore t0e deat0 of t0e %oved one

for 50ic0 t0ey are caring#

Anticipatory Grief: A Background

According to Gi%%i%and < F%e2ing 8199) ' >t0e concept of anticipatory grief 5a fir t

identified a a uni ue eparation yndro2e 7y Binde2ann 819-- ' 50o tudied t0e reaction

of fa2i%y 2e27er of o%dier during +or%d +ar II? 8p#.-1 # T0e tudy re u%t 0o5ed t0at

t0e participant reacted to t0e po i7%e deat0 of re%ative o%dier 7y e!periencing t0e

traditiona% p0a e of 2ourning' 50ic0 inc%uded: >depre ion' 0eig0tened preoccupation 5it0


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Anticipatory Grief =

t0e departed' a revie5 of a%% for2 of deat0 50ic0 2ig0t 7efa%% 0i2' and anticipation of t0e

2ode of ad u t2ent nece itated 7y it? 8Gi%%i%and < F%e2ing' 199)' p#.-& # Binde2ann

found t0at t0i type of re pon e functioned a a defen e 2ec0ani 2 again t t0e effect of an

acute 2i%itary deat0 notification 8Gi%%i%and < F%e2ing' 199) # In addition' it 5a di covered

t0at t0e 50en t0e o%dier returned fro2 ervice' t0eir fa2i%ie 0ad ucce fu%%y co2p%eted t0e

grieving proce and 7eca2e o detac0ed t0at t0ey 5ere forging ne5 a ociation 5it0 ot0er

8Gi%%i%and < F%e2ing' 199) # A%t0oug0 t0i outco2e 5a found trou7%ing' t0e concept of

anticipatory grief 5a >5ide%y endor ed 7y c%inician and re earc0er 5or$ing 5it0

ter2ina%%y6i%% patient and t0eir fa2i%ie ? 8Gi%%i%and < F%e2ing' 199) #

*ince t0en' re earc0 0a 0o5n a varying' even controver ia% picture of anticipatory

grief a it re%ate to t0e caregiver# One tudy found t0at >t0e e!pectation of deat0' 5it0 it

potentia% for anticipatory grief and preparation' 5a genera%%y 7eneficia% to 7ereave2ent

outco2e?' 50i%e anot0er found t0at >a%t0oug0 deat0 due to 0ort i%%ne e 5ere a ociated

5it0 7etter ad u t2ent to 7ereave2ent t0an udden deat0 ' %engt0y c0ronic i%%ne e 5ere

a ociated 5ere a ociated 5it0 2ore co2p%icated 7ereave2ent t0an 0orter i%%ne e ?

8Gi%%i%and < F%e2ing' 199)' p#.-= #

Rando 819)D argued t0at anticipatory grief i a 2i no2er 7ecau e >anticipatory?ugge t t0at one i grieving o%e%y for anticipated a oppo ed to pa t and current

%o e and >grief? i2p%ie t0e nece ity of co2p%ete decat0e!i fro2 t0e dying per on a oppo ed to one 0ope for and 5it0 t0at per on in t0e future# 8p#1=

T0e a7ove argu2ent 0a 7een interpreted to 2ean t0at Rando prefer a narro5er definition of

t0e ter2 >grief?' con ider t0e proce to 7e a for2 of 2ourning and prefer t0e ter2

>anticipatory 2ourning? 8Gi%%i%and < F%e2ing' 199)' p# .-- # T0e proce t0at Rando 8&(((a


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Anticipatory Grief -

%aid out inc%uded: >coping and interaction' p yc0o ocia% reorgani ation' p%anning' 7a%ancing

conf%icting de2and ' and faci%itating an appropriate deat0### 50ic0 0ave 7een 0i torica%%y a

part of grief 5or$? 8a cited in Ivancovic0 < +ong' &((.' p# &11 # Fina%%y' t0ere are t0o e t0at

deny anticipatory grief ea e t0e tran ition# Par$e and +ei 819)= argue t0at t0e

>anticipation of %o inten ifie attac02ent? 8p#)= # It i c%ear t0at t0e concept of anticipatory

grief i controver ia% and re earc0 0a %ed to varying argu2ent in t0e %iterature# Ho5ever'

eac0 of t0e concept a7ove can add i2portance to t0e de7ate' 7ut t0e focu i and a%5ay

0ou%d 7e t0e finding t0e 7e t upport 2ec0ani 2 for caregiver of t0e dying#

Anticipatory Grief Effect and Process:

Anticipatory grief 0a 7een de cri7ed a a 2u%tidi2en iona% e!perience t0at occur on

t0ree different %eve% : t0e p yc0o%ogica%' t0e interper ona% and t0e ociocu%tura% 8Hu2p0rey'

19)D # At t0e p yc0o%ogica% %eve% >t0ere are factor t0at affect t0e ot0er %eve% ' 50ic0 inc%ude

individua% coping a7i%itie and fee%ing of gui%t' re pon i7i%ity' anger and de pondency?@

50erea at t0e interper ona% %eve%' >t0e 2anner in 50ic0 t0e caregiver' fa2i%ie and t0e dying

dea% 5it0 or deny t0eir i2pending %o 5i%% 0ave an effect on t0eir anticipatory grief' a 5e%%

a po i7%y inf%uencing t0eir %ong6ter2 ad u t2ent? 8Hu2p0rey' 19)D' p# D- # *pecifica%%y' t0e

caregiver reaction can 0ave a ignificant effect on t0e e2otiona% condition of 7ot0 t0e dying

%oved one and t0e re t of t0e fa2i%y 2e27er # T0e i22inent deat0 of a %oved one i a con tant

re2inder of one o5n 2orta%ity# A% o' e%f67%a2e and regret can add to one p yc0o%ogica%

7urden and an!iety over t0e i2pending deat0 of a %oved one# 4nre o%ved i ue 5it0 pa t

di pute ' 0ar 0 5ord and un$ind action can re urface at t0i ti2e and t0i 2ay 7e an

opportunity for 0ea%ing and c%o ure' 50ic0 5i%% 0ave a po itive effect on t0e anticipatory grief


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Anticipatory Grief .

proce # Fina%%y' at t0e ociocu%tura% %eve%' anticipatory grief can a i t caregiver cope 5it0

i2pending %o t0at 0ave not 7een e!po ed to >appropriate coping trategie fro2 ocieta% or

fa2i%y ro%e 2ode% ? 8Hu2p0rey' 19)D' p#D- #

In addition' t0ere are adaptationa% ta $ t0at caregiver are confronted 5it0 in t0e

proce of anticipatory grief' 50ic0 can vary in t0e 2agnitude of t0e i%%ne and

environ2enta% factor # >*o2e of t0e e ta $ inc%ude' 7ut are not %i2ited to: re2aining

eparate' adapting to ro%e c0ange 7earing t0e affect of grief' facing rea%ity and aying

good7ye 8Hu2p0rey' 19)D # One i t0at it i e!tre2e%y i2portant for caregiver i t0e a7i%ity

to adapt to ro%e c0ange@ t0i a7i%ity to adapt i one of t0e 2o t c0a%%enging dutie one can

a u2e# +0en o2eone 7eco2e t0e caregiver' t0ey 2ay 0ave to re%in ui 0 o2e dutie to

ot0er fa2i%y 2e27er or t0ey 2ay 0ave to add to t0eir e!i ting dutie ' 50ic0 can 7e

e!tre2e%y >over50e%2ing and 2ay cau e po5er trugg%e 5it0in t0e fa2i%y? 8Hu2p0rey'

19)D' p# D) # Anot0er $ey ta $ i to face t0e rea%ity of t0e anticipated %o ' 50ic0 can 7e dea%t

5it0 in progre ion#

Hu2p0rey 819)D refer to it a a%%o5ing ti2e for co2pre0en ion andinterna%i ation of t0e painfu% infor2ation# 3rief' i2aginary g%i2p e into t0efuture in 50ic0 t0e %oved one no %onger e!i t need to 7e nor2a%i ed for t0efa2i%y 2e27er a part of t0e proce for anticipatory grief# /i cu ion of 2edica%re uire2ent ' p%an for care' funera% arrange2ent ' and financia% concern 2ay need to

7e addre ed over and over again# 8p# D)

According to +a%$er < Po2eroy 8199D ' >T0e grief of t0e caregiver %iving 5it0 t0e c0ange

and 2u%tip%e %o e during >t0e funera% t0at never end ? i a per i tent t0e2e in t0e caregiving

%iterature? 8p# &-9 # Additiona%%y' t0ere are conf%ict of e2otion 50en one i atte2pting to

tend to t0e need of t0e dying and t0e %iving i2u%taneou %y# In 0o2e6care etting ' t0e fa2i%y

2e27er i ta$ing care of t0eir %oved one at 0o2e' trying to 2aintain t0eir ot0er


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Anticipatory Grief D

re pon i7i%itie and t0ere are fe5' if any occa ion to ta$e a 7rea$# >It i not unco22on for

di co2fort or gui%t to deve%op 50en fa2i%y 2e27er $no5 t0at t0e dying %oved one 0a

o7 erved t0e2 in ituation of %evity or 0ear t0e2 ta%$ a7out an en oya7%e nig0t out' a%2o t

a if t0ere i a en e of 7etraya% 5it0 t0e 2o2entary putting a ide of pain and grief? 8Rando'

19)D' p# =1 # It i i2perative t0at t0e caregiver 7e a%%o5ed re pite' o t0at t0ey can 2aintain

t0eir per ona% 0ea%t0' attend to t0e fa2i%y and t0eir per ona% need # A%% t0e e i ue are critica%

7ecau e at t0e a2e ti2e a providing care and anticipating t0e deat0 of t0eir %oved one' t0e

fa2i%y unit 2u t ti%% function' o t0at t0e y te2 doe not co2p%ete%y co%%ap e during t0i

cri i #

The Caregiver Experience with HI !AI"#:

"ie5ing t0e i2pact of caregiver anticipatory grief t0roug0 t0e %en of HI" AI/*

7ring an i2portant %ayer into t0e di cu ion# It i argued t0at anticipatory grief 2ay 7enefit

t0o e 50o provide care to t0o e 5it0 HI" AI/*' 7ut t0at t0e %engt0 of t0e i%%ne and >t0e

tig2ati ation and 2u%tip%e %o e a ociated 5it0 t0e di ea e 2ay i2pede t0e caregiver

a7i%ity to effective%y engage in t0e grief proce ? 8+a%$er' Po2eroy' ;cNei%' < Fran$%in'

199D' p# -9 # /ue to t0e advent of p0ar2aceutica% intervention and 2edica% re earc0' t0e

%ife pan for per on %iving 5it0 HI" AI/* 0a %engt0ened# In turn' t0i 0a produced i ue

for caregiver t0at are ent5ined in t0e >c0ronic nature of t0e di ea e? t0at inc%ude: >nu2erou

re2i ion and re%ap e @ increa ed financia%' ocia%' p0y ica% and e2otiona% pre ure @ %ong6

ter2 fa2i%y di ruption@ t0e e2otiona% re pon e of caregiver @ and' recurring di%e22a

urrounding deci ion 2a$ing and treat2ent c0oice ? 8+a%$er et a%#' 199D' p# .( # In t0e

%iterature' t0ere i di cu ion of anticipatory grief occurring during a D to 1) 2ont0 period@


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Anticipatory Grief ,

0o5ever' 7ecau e t0e %engt0 of t0e di ea e can continue 2uc0 %onger t0an t0i point t0ere are

additiona% i ue ' ta $ and upport t0at can a i t t0e caregiver 8+a%$er et a%#' 199D #

T0ere are t0ree p0a e of c0ronic i%%ne t0at can 7e a ociated 5it0 t0e anticipatory

grief proce a2ong caregiver # T0e fir t i t0e >cri i p0a e? 50ic0 i 7efore and

i22ediate%y after t0e diagno i @ t0e ti2e 50en arrange2ent are 2ade and anticipatory

grieving u ua%%y co22ence 8+a%$er et a%#' 199D # /uring t0i ti2e' it 5ou%d ee2 t0at an

e!tre2e range of e2otion 5ou%d 7e pre ent@ fro2 0a2e to denia% to anger' e pecia%%y 50en

dea%ing 5it0 a di ea e uc0 a HI" AI/*# T0e ocia% tig2a invo%ved in o2e in tance can

co2pound t0e tre on t0e caregiver if t0e condition i $ept concea%ed fro2 fa2i%y and

friend # >In addition' fa2i%y and friend often encourage t0e caregiver to 2ove uic$%y

t0roug0 t0e grief proce or caregiver 2ay $eep t0eir grief a ecret and 2ay 7e re%uctant to

u e ot0er for t0e upport t0ey 2ay need? 8+a%$er et a%#' 199D' p#.1 # It i unfortunate t0at

even t0oug0 ociety 0a progre ed in it 2ind et' t0ere are ti%% notion a ociated 5it0 t0e

di ea e t0at cau e fa2i%ie to $eep diagno e a ecret# T0e e are u t a fe5 of t0e 5ay t0at

ocia% tig2a can affect t0e proce # T0e >c0ronic p0a e? i %engt0y and e!tre2e%y vo%ati%e

7ecau e t0i i t0e tage 50ere t0e caregiver can incur 2u%tip%e %o e # *ince per on 5it0

HI" AI/* can go t0roug0 2any tage of i%%ne ' t0ere are cyc%e of 7ot0 trong and poor

0ea%t0 8+a%$er et a%#' 199D # Caregiver face t0e e %o e repeated%y a t0e i%%ne progre e :

0ope for t0e future' upport net5or$ ' financia%' co2panion 0ip' and never $no5ing 50en t0e

period i tru%y going to end# T0e fina% p0a e i t0e >ter2ina% p0a e? 50ic0 i 50en t0ere can

even 7e fee%ing of re%ief t0at t0e uffering of t0eir %oved one 5i%% fina%%y 7e over 8+a%$er et

a%#' 199D # On t0e ot0er 0and' t0i i an opportunity for t0e caregiver to re o%ve fee%ing 5it0


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Anticipatory Grief )

t0eir %ove one fro2 t0e pa t and 2a$e peace o t0ere i c%o ure at t0i critica% ti2e# /uring a%%

t0e e p0a e ' it i critica% t0at c%inica% intervention i avai%a7%e to a i t caregiver ' a it re%ate

to HI" AI/*@ prefera7%y at t0e on et of diagno i ' 7ecau e it ee2 t0at fa2i%ie are 2o t in

need of 0e%p at t0i ti2e 7ut are %ea t %i$e%y to ee$ or receive it#

Intervention #trategies and I$p%ications:

It i i2portant t0at caregiver 7e given an opportunity to care for t0eir ter2ina%%y

%oved one and concurrent%y 0ave t0e a7i%ity to 7egin t0e anticipatory grief proce # Idea%%y'

intervention 0ou%d 7e avai%a7%e at t0e ti2e of diagno i and continue t0roug0out t0e p0a e

of t0e i%%ne # It cou%d 7e po i7%e t0at 5aiting unti% t0e ter2ina% tage i too %ate for t0e

caregiver to gain t0e upport and guidance t0ey 2ay need in t0e proce #

According to +a%$er et a%#' 8199D ' a%t0oug0 t0e 7enefit of engaging in anticipatorygrief 2ay not 7e apparent unti% %ong after deat0 occur ' t0o e50o engage in anticipatory grief during and inter2ediate6ter2 i%%ne are

7etter a7%e to re2ain engaged 5it0 t0e dying per on and report 7etter preparation for deat0 and ad u t2ent after deat0# 8p# .=

*o2e pecific intervention t0at can 7e reco22ended for caregiver inc%ude: a e ing t0e

caregiver previou e!perience 5it0 %o to ee 50ere t0ey are and 50ere t0ey can go fro2

0ere' referring t0e caregiver to upport group and pro2oting open co22unication 7et5een

t0e caregiver and t0e dying per on 7y under tanding t0e fa2i%y y te2 and 2a$ing

individua%i ed' rea%i tic reco22endation # 4 ing fa2i%y conferencing to 0e%p t0e2 adapt to

ro%e and re pon i7i%itie t0at 5i%% 7e c0anging and 2o t i2portant%y' upporting t0e caregiver

in co2pre0ending t0at it i i2portant to ta%$ to t0eir %oved one and e!pre t0eir good7ye are

a% o reco22ended 8+a%$er et a%#' 199D # It i i2portant t0at ervice are acce i7%e not u t for


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t0e patient 7ut a% o for t0e caregiver t0at can 7e tai%ored o t0at even if t0ey are open to

receiving ervice ' t0ey are ti2e%y and a individua%i ed a po i7%e# T0e i2p%ication for

ocia% 5or$ are c%ear: >intervention in anticipatory grief give t0e practitioner an

opportunity to capita%i e on a t0erapeutic opportunity? 8+a%$er et a%#' 199D' p#.. # T0i 2ean

t0at t0e ocia% 5or$er 0a an opportunity to e entia%%y do >grief 5or$? 7efore t0e deat0

occur and a i t t0e caregiver engage and progre to a point 50ere grief can occur 7ut

prevent e2otiona% detac02ent fro2 t0e dying %oved one#

Conc%usion:

T0e caregiver ta$e on a 0eavy 7urden' 50et0er it i out of %ove or o7%igation# It i

i2portant t0at for t0eir a$e and for t0e a$e of t0e dying %oved one t0ere i an out%et t0at can

provide ocia% and e2otiona% upport t0roug0 t0e ourney# T0erefore' it i c%ear t0at a i ting

caregiver 5it0 anticipatory grief i an i2portant tage in t0e caregiving proce for a%%

invo%ved# A%t0oug0 t0ere i a %ot of re earc0 on t0e topic' furt0er re earc0 t0at direct%y focu e

on p%anning and eva%uation of caregiver6driven c%inica% intervention i needed to provide

co2p%ete ervice de%ivery#


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Anticipatory Grief 1(

Reference

Gi%%i%and' G# < F%e2ing' *# 8199) # A co2pari on of pou a% anticipatory grief and

conventiona% grief# "eath #tudies& '' 8D ' .-16.D9#

Hu2p0rey' ;#A# 819)D # Effect of anticipatory grief for t0e patient' fa2i%y 2e27er' and

caregiver# In T#A# Rando 8Ed# ' (oss and anticipatory grief) 8pp# D=6,9 # Ne5 Yor$:

Be!ington 3oo$ #

Ivancovic0' /#A# < +ong' P# T# 8&((. # T0e ro%e of e!i tentia% and piritua% coping in

anticipatory grief# In A# To2er' G# E%ia on' < P# +ong 8Ed # ' Existentia% and

spiritua% issues in death attitudes) 8pp# &(96&=- # Ne5 Yor$: Tay%or < Franci #

Binde2ann' E# 819-- # *y2pto2ato%ogy and 2anage2ent of acute grief# A$erican

*ourna% of Psychiatry& +,+ ' 1-161-)#

;angan' P#A#' Tay%or' #B#' Ya7roff' #R#' F%e2ing' /#A#' < Ing0a2' #;# 8&((= #

Caregiving near t0e end of %ife# Pa%%iative and #upportive Care& + 8= ' &-,6&.9#

Par$e ' C#;# < +ei ' R#*# 819)= # -ecovery fro$ .ereave$ent) Ne5 Yor$: 3a ic 3oo$ #

Rando' T#A# 819)D # A co2pre0en ive ana%y i of anticipatory grief: Per pective ' proce e '

pro2i e ' and pro7%e2 # In T#A# Rando 8Ed# ' (oss and anticipatory grief) 8pp# =6=, #

Ne5 Yor$: Be!ington 3oo$ #

Rando' T#A# 8&((( # Anticipatory 2ourning: A revie5 and criti ue of t0e %iterature# In T#A#

Rando 8Ed# 'C%inica% di$ensions of anticipatory $ourning: Theory and practice in

working with the dying& their %oved ones& and their caregivers 8pp# 1,6.( #

C0a2paign' IB: Re earc0 Pre #


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4#*# /epart2ent of Hea%t0 and Hu2an *ervice 8199) # Infor2a% caregiving: Co2pa ion

in action# 3a ed on data fro2 t0e Nationa% *urvey of Fa2i%ie and Hou e0o%d #

+a 0ington' /C: /epart2ent of Hea%t0 and Hu2an *ervice #

+a%$er' R# #' Po2eroy' E#C#' ;cNei%' #*#' < Fran$%in' C# 8199D # Anticipatory grief and

AI/*: *trategie for intervening 5it0 caregiver # Hea%th / #ocia% 0ork& '+ 81 ' -16.,#

+a%$er' R# # < Po2eroy' E#C# 8199D # /epre ion or griefJ T0e e!perience of caregiver of

peop%e 5it0 de2entia# Hea%th / #ocia% 0ork& '+ 8- ' &-,6&.-#

anticipatory grief 7819 (1)

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