COPING WITH LOSS, DEATH AND GRIEVING

LOSS
INTRODUCTION

Loss is a part of life cycle. All people eperie!ce i! t"e for# of
c"a!$e, $ro%t" a!& tra!sitio!. O'r loss (e$i!s at (irt" )"a*i!$ to lea*e
t"e %ar#t" + sec'rity of t"e %o#(, a!& e!& %it" t"e 'lti#ate loss,
t"e &eat" of self. T"e eperie!ce of loss is pai!f'l, fri$"te!i!$ a!&
lo!ely a!& it tri$$ers a! array of e#otio!al respo!se. People #ay
*acillate (et%ee! &e!ial, s"oc-, &is(elief, a!$er, i!ertia, i!te!se
year!i!$, lo!eli!ess, sa&!ess loss of co!trol, &epressio! a!& spirit'al
&espair.
I! a&&itio! to !or#al losses associate& %it" lifecycle sta$es t"ere
are pote!tial losses of "ealt", a (o&y part, self i#a$e, self estee# a!&
e*e! o!e.s life. W"e! t"ere are p"ysical "ealt" pro(le#s s'c" as
&ia(etes, AIDS, car&iac co!&itio!s, GI &isor&ers, &isa(ilities a!&
!e'rolo$ical i#pair#e!ts te!& to respo!& to t"ese ill!ess %it" a $rief.
DEFINITION OF LOSS
Loss ca! (e &e/!e& as t"e '!&esire& c"a!$e or re#o*al of a *al'e&
o(0ect, perso! or sit'atio!
TYPES OF LOSSES
Necessary losses
It is a! i!te$ral part of eac" perso!s life. Necessary losses
are so#et"i!$ !at'ral a!& positi*e .E $1 $ro%i!$ 'p process. We
&e*elop i!&epe!&e!ce fro# o'r pare!ts, start a!& lea*e sc"ool,
c"a!$e frie!&s, (e$i! career a!& for# relatio!s"ips. T"ese losses
are replace& (y so#et"i!$ &i2ere!t a!& (etter.
Actual losses
T"e loss of a!y perso! or o(0ect t"at ca! !o lo!$er (e felt,
"ear&, -!o%! or eperie!ce& (y t"e i!&i*i&'al. E $1 loss of a (o&y
part, c"il& relatio!s"ip, or role at %or-.
Perceived losses
A!y loss t"at is '!i3'ely &e/!e& (y t"e $rie*i!$ clie!t, #ay
(e less o(*io's to ot"ers. T"ey are easily o*er loo-e& a!&
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#is'!&erstoo&, yet t"e pro$ress of $rief follo%s t"e sa#e
se3'e!ci!$ a!& pro$ressio! as act'al losses. E $ 1loss of co!/&e!ce
or presti$e.
Maturational losses
A!y c"a!$e i! t"e &e*elop#e!t process t"at is !or#ally
epecte& &'ri!$ a life ti#e. It is a part of !or#al life tra!sitio!, ('t
feels "elp a perso! to cope %it" t"e c"a!$e.
Situational losses
It i!cl'&es a!y s'&&e! '!pre&icta(le eter!al e*e!ts. Ofte!
t"is type of loss i!cl'&es #'ltiple losses rat"er t"a! a si!$le loss
s'c" as a'to#o(ile acci&e!t t"at lea*es a &ri*er paralyse&, '!a(le
to ret'r! to %or- a!& $rie*i!$ o*er t"e loss of a passe!$er i! t"e
acci&e!t
Loss of external objects
Ete!& of $rie*i!$ &epe!&s o! o(0ect.s *al'e, se!ti#e!t
attac"e& to it a!& it.s 'sef'l!ess .E $1 loss ,#isplace#e!t,
&eterioratio!, &estr'ctio! (y !at'ral ca'ses
Loss of known environment
Lo!eli!ess or !e% '!fa#iliar e!*iro!#e!t t"reate!s self
estee# a!& #a-es $rie*i!$ &i4c'lt. E $1 #o*i!$ fro# a
!ei$"(or"oo&, "ospitali5atio!, a !e% 0o( etc.
Loss of signifcant others
Loss of a fa#ily #e#(er, frie!&, tr'ste& !'rse or a!i#al
co#pa!io!.
Loss of life
Loss of life creates $rief for t"ose left (e"i!&. Perso! faci!$
&eat" ofte! fears pai!, loss of co!trol, a!& &epe!&e!cy o! ot"ers. E
$1 &eat" of a fa#ily #e#(er, frie!& or o%! &eat".
GRIE6
Grief is t"e p"ysical ,psyc"olo$ical + spirit'al respo!se to loss. It is
#a!ifeste& i! a *ariety of %ays t"at are '!i3'e to a! i!&i*i&'al a!&
(ase& o! perso!al eperie!ces, c'lt'ral epectatio!s a!& spirit'al
(eliefs. 7o'r!i!$ is t"e psyc"olo$ical process t"ro'$" %"ic" t"e
i!&i*i&'al passes o! to s'ccessf'l a&aptatio! to t"e loss of a *al'e&
o(0ect. 8erea*e#e!t i!cl'&es $rief a!& #o'r!i!$9t"e i!!er feeli!$ a!&
o't%ar& reactio!s of t"e s'r*i*or. T"e ti#e of $rie*i!$ &epe!&s o! t"e
si$!i/ca!ce of t"e loss, t"e le!$t" of ti#e t"e perso! %as -!o%! a!&
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lo*e&, t"e a!ticipatio! of or preparatio! for t"e loss, t"e perso!.s
e#otio!al sta(ility a!& copi!$ a(ility. So#e people resort to a('se of
prescriptio! #e&icatio!s, ille$al &r'$s or alco"ol if t"ey /!& it &i4c'lt
to cope %it" t"e loss, t"e $rief process is t"e! co#plicate& (y t"e 'se
of a&&icti*e s'(sta!ces.
TYPES OF GRIEF
Normal grief
It co!sists of !or#al feeli!$s, (e"a*iors a!& reactio! to loss.
T"is !or#al $rief respo!se to a loss ca! pro*e, "elpi!$ o!e to #at're
a!& &e*elop as a perso!. It i!cl'&es rese!t#e!t, sorro%, a!$er, cryi!$,
lo!eli!ess a!& te#porary %it" &ra%l fro# acti*ities.
Anticiatory grief
T"e process of &ise!$a$i!$ or letti!$ $o t"at occ'rs (efore a!
act'al loss of &eat" "as occ'rre& .E $1 o!ce a fa#ily recei*es a
ter#i!al &ia$!osis, t"ey (e$i! t"e process of sayi!$ $oo& (ye a!&
co#pleti!$ t"e life a2airs. W"e! t"e act'al process of &yei!$ is
ete!&e& for a lo!$ ti#e, perso!s i! t"e clie!t fa#ily #ay "a*e fe%
sy!&ro#es of $rief o!ce &eat" occ'rs.
!omlicated grief
W"e! t"e perso! "as &i4c'lty i! pro$ressi!$ t"ro'$" t"e
!or#al process of $rie*i!$, (erea*e#e!t (eco#e co#plicate&. I!
t"ese cases (erea*e#e!t appears to $o %ro!$ a!& loss !e*er resol*es.
T"is ca! t"reate! t"e perso!s relatio!s"ip %it" ot"ers. Co#plicate&
$rief i!cl'&es
a,c"ro!ic $rief9(e$i!s as !or#al $rief ('t co!ti!'es lo!$ ter#, %it"
little resol'tio! of feeli!$s a!& i!a(ility to re0oi! !or#al life
(,&elaye& $rief9 a $rief t"at is p't of '!til a later ti#e
c,ea$$erate& $rief
&,#as-e& $rief9occ'rs %"e! t"e perso! is $rie*i!$ ('t epressi!$ t"e
$rief t"ro'$" ot"er types of (e"a*iors. e $1 a #a! %"ose %ife "as &ie&
#ay (e$i! &ri!-i!$ "ea*ily
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"isenfranchised grief
Perso! eperie!ces $rief %"e! a loss is eperie!ce& a!& ca!!ot
(e ope!ly ac-!o%le&$e&, socially sa!ctio!e& or p'(licly s"are&. E $1
loss of part!er fro# AIDS, c"il& eperie!ci!$ &eat" of step pare!t
FACTORS INFLUENCING LOSS AND GRIEF
#uman develoment
Perso! of &i2eri!$ a$es a!& sta$es of &e*elop#e!t %ill &isplay
&i2ere!t a!& '!i3'e sy#pto#s of $rief. E $1 to&&lers are '!a(le to
'!&ersta!& loss or &eat", ('t t"ey %ill feel $reat a!iety o*er loss of
o(0ects a!& separatio! fro# pare!ts
Psychological ersectives of loss and grief
A$e, $e!&er, stat's, race, spirit'ality, reli$io's (eliefs, i!tellect,
ac"ie*e#e!t, self epressio! a!& c'lt'ral opport'!ity are t"e (asis for
a! i!&i*i&'al to &e/!e a!& 3'alify t"e &e/!itio! of life or &eat".
Socio economic status
It i!:'e!ces a perso!s a(ility to o(tai! optio!s a!& 'se s'pport
#ec"a!is#s %"e! copi!$ %it" loss. Ge!erally a! i!&i*i&'al feel
$reater ('r&e! fro# a loss %"e! t"ere is a lac- of /!a!cial,
e&'catio!al or occ'patio!al reso'rces T"ese clie!t.s re3'ire referral to
co##'!ity social ser*ice a$e!cies t"at ca! pro*i&e !ee&e& reso'rces.
Personal relationshis
W"e! t"e loss i!*ol*es a lo*e& o!e, t"e 3'ality a!& #ea!i!$ of
relatio!s"ip are critical i! '!&ersta!&i!$ a perso!.s $rief eperie!ce. It
is sai& t"at to lose yo'r pare!ts is to lose yo'r past, to lose yo'r
spo'se is to lose yo'r prese!t a!& to lose yo'r c"il& is to lose yo'r
f't're. W"e! t"e relatio!s"ip (et%ee! t%o perso!s "as (ee! *ery
close, it %ill (e *ery &i4c'lt for t"e o!e left (e"i!& to cope
Nature of loss
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T"e a(ility to resol*e $rief &epe!&s o! t"e #ea!i!$ of t"e loss
a!& t"e sit'atio! s'rro'!&i!$ t"e loss. T"e *isi(ility of t"e loss
i!:'e!ces t"e s'pport a perso! recei*es.
E $1 T"e loss of "o#e fro# a tor!a&o %ill (ri!$ s'pport fro# t"e
co##'!ity, %"ere as a pri*ate loss of a! i#porta!t possessio! #ay
(ri!$ less s'pport fro# ot"ers
Amount of suort for the bereaved
People %it" #ore e#otio!al a!& psyc"olo$ical s'pport
typically "a*e less co#plicate& $rief
!ulture and ethinicity
I!terpretatio! of t"e loss a!& t"e epressio! of t"e $rief arise
fro# c'lt'ral (ac-$ro'!& a!& fa#ily practices. Critical co#po!e!ts of
c'lt're are t"eir (asic core (elief syste#s t"at t"ey ca! a!& ofte! &o
"ol& to.
Siritual beliefs
I!&i*i&'al.s spirit'ality i!:'e!ces t"eir a(ility to cope %it"
loss. Clie!ts %it" a stro!$ i!terco!!ecte&!ess %it" a "i$"er po%er
are a(le to face &eat" %it" relati*ely #i!i#al &isco#fort.

STAGES OF GRIEVING
MODEL OF SUCCESSFUL GRIEVING : ENGEL(1964)
E!$el );<=>, %as a#o!$ t"e /rst to &e/!e sta$es of $rief. E!$el.s si
sta$es are1
$% Shock and disbelief%
S"oc- a!& &is(elief are 's'ally &e/!e& as ref'sal to accept t"e fact
of loss, follo%e& (y a st'!!e& or !'#( respo!se
&% "eveloing awareness.
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De*elopi!$ a%are!ess is c"aracteri5e& (y p"ysical a!& e#otio!al
respo!ses s'c" as a!$er, feeli!$ e#pty a!& cryi!$.
'% (estitution%
Restit'tio! i!*ol*es t"e rit'als s'rro'!&i!$ t"e loss %it" &eat"? it
i!cl'&es reli$io's, c'lt'ral or social epressio!s of #o'r!i!$, s'c" as
f'!eral ser*ices.
)% (esolving the loss%
It i!*ol*es &eali!$ %it" t"e *oi& left (y t"e loss.
*% +deali,ation.
I&eali5atio! is t"e ea$$eratio! of t"e $oo& 3'alities t"at t"e perso! or
o(0ect "a&, follo%e& (y accepta!ce of t"e loss a!& a lesse!e& !ee& to
foc's o! it.
-% .utcome
O'tco#e t"e /!al resol'tio! of t"e $rief process i!cl'&es &eali!$ %it"
t"e loss as a co##o! life occ'rre!ce.
STAGES OF GRIEVING : KUBLER ROSS (1975)
De!ial
A!$er
8ar$ai!i!$
Depressio!
Accepta!ce
.
"enial
De!ial is 's'ally o!ly a te#porary &efe!ce for t"e i!&i*i&'al.E.$.9@I feel
/!eA, @t"is ca!!ot (e "appe!i!$, !ot to #eA
Anger
O!ce i! t"e seco!& sta$e, t"e i!&i*i&'al reco$!ises t"e &e!ial ca!!ot
co!ti!'e. 8eca'se of a!$er t"e perso! is *ery &i4c'lt to care for &'e
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to #isplace& feeli!$s.E.$.1A%"y #eB It.s !ot fairA, @"o% ca! t"is
"appe!i!$ to #eBA
/argaining
T"e t"ir& sta$e i!*ol*es t"e "ope t"at t"e i!&i*i&'al ca! so#e"o%
postpo!e or &elay &eat".E.$.1AI '!&ersta!& I %ill &ie, ('t if I co'l& 0'st
"a*e #ore ti#e....A
"eression
I! t"is sta$e t"e perso! (e$i!s to '!&ersta!& t"e certai!ty of &eat".
8eca'se of t"is t"e i!&i*i&'al #ay (eco#e sile!t, ref'se *isitors a!&
spe!& #'c" of t"e ti#e cryi!$ a!& $rie*i!$.E.$.1AI #iss #y lo*e& o!e,
%"y $o o!BA
Accetance
T"e /!al sta$e co#es %it" peace a!& '!&ersta!&i!$ of &eat" t"at is
approac"i!$. Ge!erally, t"e perso! i! t"is sta$e %a!ts to (e left alo!e.
T"is sta$e "as also (ee! &escri(e& as t"e e!& of t"e &yi!$
str'$$le.E.$.1AI ca!.t /$"t it, I #ay as %ell prepare for itAT"ese sta$es
are !ot !ecessarily se3'e!tial sta$es. People ca! #o*e fro# o!e sta$e
to a!ot"er a!& t"e! (ac- a$ai! or s-ip a sta$e as t"ey atte#pt to &eal
%it" t"e loss.
MARTOCCIO!S STAGES OF GRIEVING
7artocc"io prese!te& /*e cl'ster of $rief to i!cl'&e
;. S"oc- a!& &is(elief.
C. Dear!i!$ a!& protest.
E. A!$'is", &isor$a!i5atio! a!& &espair.
>. I&e!ti/catio! of (erea*e#e!t98erea*e#e!t is a! i!&i*i&'al
e#otio!al respo!se to t"e loss of a si$!i/ca!t perso!.
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RANDO!S STAGES OF GRIEF
;. A*oi&a!ce
C. Co!fro!tatio!
E. Acco##o&atio!
A*oi&a!ce9i!cl'&es respo!ses s'c" as s"oc-, &e!iel, a!$er +
(ar$ai!i!$.
Co!fro!tatio!9t"e p"ase &'ri!$ %"ic" t"e perso! act'ally faces
t"e loss. It is a *ery e#otio!al + 'psetti!$ ti#e. T"is is %"e! t"e
perso! feels t"e $rief #ost ac'tely
Acco##o&atio!9t"e perso! (e$i!s to li*e %it" t"e loss, feel
(etter + res'#e so#e ro'ti!e acti*ities
Ra!&o.s sta$es are -!o%! as t"e si R.s of $rie*i!$. T"ey are
Reco$!isi!$ t"e loss)a%are!ess,
Reacti!$ to t"e separatio!)feel t"e e#otio!s,
Recollecti!$ #e#ories of t"e &ecease&)re#e#(eri!$,
relie*i!$,
Reli!$'is"i!$ t"e ol& attac"#e!ts)!e% %ays of li*i!$
%it"o't t"e &ecease&,
Rea&0'sti!$ to t"e !e% e!*iro!#e!t)!e% copi!$ s-ills,
Rei!*esti!$ self)e!er$y o!ce t'r!e& i!%ar& o! $rief to (e
foc'sse& o't%ar&,
STAGES OF BEREAVEMENT: BO"LBY(1961)
Protest
Disor$a!i5atio!
Reor$a!i5atio!
PATTERNS OF LIVING "ILE DYEING : MARTOCCIO(19#$,
;. Pea- a!& *alleys or perio&s of "ope a!& &epressio!1 Despite
"opef'l ti#es t"ere is still a! o*erall #o*e#e!t to%ar& &ecli!e
a!& &eat"
C. Desce!&i!$ platea's1 T"is &escri(es a &o%!%ar& tre!& %it"
pro$ressi*e &e(ilitatio! a!& e*e!t'ally &eat"
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E. Do%!%ar& slope %it" p"ysiolo$ical para#eters i!&icati!$ t"at
&eat" is i##i!e!t. Ofte! o(ser*e& i! critical care '!its %"ere
people a!& fa#ilies "a*e !o ti#e to prepare for &eat"
>. Last patter! is a &o%!%ar& sla!t t"at re*eals a crisis e*e!t, s'c"
as se*ere cere(ral "e#orr"a$e %it" al#ost !o "ope of reco*ery.
Ofte! t"e patie!t i! t"is patter! is (ei!$ #ai!tai!e& o! life
s'pport syste#s
"ILLIAM "ORDEN!S TEORY
His t"eory &escri(es t"e tas-s a $rie*i!$ perso! #'st ac"ie*e.
T"ese i!cl'&es t"e follo%i!$1
;. (eali,ing that loved one is gone0 i! t"e "o'rs + &ays after a
si$!i/ca!t loss, t"e $rie*i!$ perso! typically feels !'#( a!&
'!a(le to accept t"e fact of t"e loss. T"is !'#(!ess is t"o'$"t to
(e a! "elpf'l for# of &e!ial. So t"e tas- of reali5i!$ t"at lo*e&
o!e or o(0ect is $o!e #ay ta-e se*eral &ays, i! case of s'&&e!
&eat" it ta-es se*eral %ee-s to ac"ie*e.
C. 1xeriencing the ain0 o!ce t"e $rie*i!$ perso! "as accepte&
t"e reality of t"e loss, t"e feeli!$ a!& e#otio!s t"at s'rface are
i!te!se a!& ca! c"a!$e rapi&ly. T"is #a-es t"e perso! feel o't
of co!trol. People i! t"is sta$e #ay say t"at t"ey feel as if t"ey
are $oi!$ cra5y. T"is is t"e lo!$est p"ase of $rie*i!$
E. Adjusting to the environment without the deceased0 t"is #ea!s
perfor#i!$ acti*ities alo!e ,s'c" as $oi!$ for %al- or s"oppi!$,
t"at %ere o!ce s"are& or ta-i!$ o! roles a!& respo!si(ilities t"at
t"e &ecease& pre*io'sly "el&. O!ce t"e perso! "as esta(lis"e&
t"e !e% patter! "e feels satisfactio! a!& i!crease& self estee#
>. Adjusting to the environment without the deceased1 i!itially all
e!er$y is foc'se& o! t"e &ecease&1 t"i!-i!$ a(o't t"e perso!,
tal-i!$ a(o't "er, reli*i!$ #e#ories a!& so o!. Co!ce!tratio! is
&i4c'lt, so t"e $rie*i!$ perso! /!&s it "ar& to e!$a$e i!
acti*ities s'c" as rea&i!$. W"e! t"e perso!.s e!er$y (e$i!s to
:o% to%ar& ot"ers or to &i2ere!t or for#er i!terest, t"e "eali!$
process is i! pro$ress.

DEAT AND DYING
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Deat" is t"e 'lti#ate loss.T"e &yei!$ perso! 'lti#atelyfaces
t"e loss of p"ysical co!trol a!& f'!ctio!, i!&epe!&e!ce, relatio!s"ips,
possi(ilities a!& 'lti#ately life itself.
DEFINITION
I! ;<F;, t"e Presi&e!t.s co##issio! for t"e st'&y of
Et"ical Pro(le#s i! #e&ici!e a!& 8e"a*io'ral a!& 8io#e&ical researc"
&e/!e& %&'() as prese!t %"e! a! i!&i*i&'al "as s'stai!e& eit"er
irre*ersi(le cessatio! of circ'latory a!& respiratory f'!ctio!s, or
irre*ersi(le cessatio! of all f'!ctio!s of t"e e!tire (rai!, i!cl'&i!$ (rai!
ste#.
Dyi!$ #ay occ'r s'&&e!ly as a res'lt of a! acci&e!t
,i!0'ry or pat"olo$ic crisis s'c" as a "eart attac- or it #ay occ'r after
a prolo!$e& eperie!ce of a &e(ilitati!$ &isease s'c" as ca!cer, AIDS
or #'ltiple sclerosis. Dyi!$ is a process rat"er t"a! a! e*e!t %"ic",
o!ce (e$'!, %ill lea& to t"e &eat" of e*ery cell i! t"e (o&y. So#e cells
ca! li*e #'c" lo!$er t"a! ot"ers %it"o't oy$e! or !'trie!ts. 6or
ea#ple (rai! cells (e$i! to &ie after a #atter of a fe% #i!'tes
%"ereas cells i! t"e eye a!& s-i! ca! s'r*i*e for C> "o'rs or #ore
after t"e "eart "as stoppe&. 8eca'se &yi!$ is a process, it is !ecessary
to i&e!tify %"e! t"e process reac"es t"e poi!t of &eat" a!& a li*i!$
"'#a! (ei!$ ca! !o lo!$er eist. Deat" t"erefore is !ot %"e! e*ery
cell i! t"e (o&y "as &ie& ('t %"e! a! i!&i*i&'al s'2ers a! irre*ersi(le
loss of t"e capacity to (e co!scio's co#(i!e& %it" t"e irre*ersi(le loss
of t"e capacity to (reat"e. T"is occ'rs %"e! *ital ce!tres i! t"e (rai!
ste#, or (ase of t"e (rai!, are &a#a$e& (eyo!& repair. S'c" &a#a$e
ca! occ'r %"e! t"e (rai! itself is i!0're&, s'c" as i! a! acci&e!t, or
ca! occ'r i!&irectly (y star*i!$ t"e (rai! of oy$e!, s'c" as %"e! t"e
10
"eart stops (eati!$.
STANDARDS OF DEAT DETERMINATION
)a, A perso! is &ea& %"e!, accor&i!$ to or&i!ary sta!&ar&s of #e&ical
practice, t"ere is irre*ersi(le cessatio! of t"e perso!.s spo!ta!eo's
respiratory a!& circ'latory f'!ctio!s. )Patie!t is p'lse less, ap!oeic a!&
'!respo!si*e to *er(al sti#'li for a perio& of at least C G H #i!'tes,.
)(, If arti/cial #ea!s of s'pport precl'&e a &eter#i!atio! t"at a
perso!Is spo!ta!eo's respiratory a!& circ'latory f'!ctio!s "a*e
cease&, t"e perso! is &ea& %"e!, i! t"e a!!o'!ce& opi!io! of a
p"ysicia!, accor&i!$ to or&i!ary sta!&ar&s of #e&ical practice, t"ere is
irre*ersi(le cessatio! of all spo!ta!eo's (rai! f'!ctio!. Deat" occ'rs
%"e! t"e rele*a!t f'!ctio!s cease.
NEEDS OF TE DYING PATIENT
D*+,- .&/01,!0 2+33 14 /+-)(0
6ro# A#erica! Jo'r!al of !'rsi!$, KH);,<<
I "a*e t"e ri$"t to (e to (e treate& as a li*i!$ "'#a! (ei!$ '!til i
&ie.
I "a*e t"e ri$"t to #ai!tai! a se!se of "opef'l!ess, "o%e*er
c"a!$i!$ its foc's #ay (e.
I "a*e t"e ri$"t to (e care& for (y t"ose %"o ca! #ai!tai! a
se!se of "opef'l!ess, "o%e*er c"a!$i!$ t"is #ay (e.
I "a*e t"e ri$"t to epress #y feeli!$s a!& e#otio!s a!& #y
approac"i!$ &eat" i! #y o%! %ay.
I "a*e t"e ri$"t to participate i! &ecisio!s co!cer!i!$ #y care.
I "a*e t"e ri$"t to epect co!ti!'i!$ #e&ical a!& !'rsi!$
atte!tio!.
I "a*e t"e ri$"t !ot to &ie alo!e.
I "a*e t"e ri$"t to (e free fro# pai!.
I "a*e t"e ri$"t to "a*e #y 3'estio!s a!s%ere& "o!estly.
11
I "a*e t"e ri$"t !ot to (e &ecei*e&.
I "a*e t"e ri$"t to "a*e "elp fro# a!& for #y fa#ily i! accepti!$
#y &eat".
I "a*e t"e ri$"t to &ie i! peace a!& &i$!ity.
I "a*e t"e ri$"t to retai! #y i!&i*i&'ality a!& !ot (e 0'&$e& (y
#y &ecisio!s, %"ic" #ay (e co!trary to t"e (eliefs of ot"ers.
I "a*e t"e ri$"t to &isc'ss a!& e!lar$e #y reli$io's or spirit'al
eperie!ces, re$ar&less of %"at t"ey #ea! to ot"ers.
I "a*e t"e ri$"t to epect t"at t"e sa!ctity of t"e "'#a! (o&y
%ill (e respecte& after &eat".
I "a*e t"e ri$"t to (e care& for (y cari!$, se!siti*e,
-!o%le&$ea(le people %"o %ill atte#pt to '!&ersta!& #y !ee&s
a!& %ill (e a(le to $ai! so#e satisfactio! i! "elpi!$ face #y
&eat".
CLINICAL MANIFESTATIONS AT TE END OF LIFE
Deat" occ'rs %"e! all *ital or$a!s a!& syste#s cease to f'!ctio!. As
&eat" approac"es, #eta(olis# is re&'ce& a!& t"e (o&y $ra&'ally
slo%s &o%! '!til all f'!ctio! e!&s. Ge!erally respiratio! ceases /rst,
a!& t"e! "eart stops (eati!$ %it"i! a fe% #i!'tes. T"e #a!ifestatio!
i! &etail i!cl'&es p"ysical a!& psyc"olo$ical #a!ifestatio!s.
PYSICAL MANIFESTATIONS
SENSORD SDSTE7
Heari!$ 9 's'ally last se!se to &isappear
To'c" 9 &ecrease& se!satio!
9 &ecrease& perceptio! of to'c" a!& pai!
Taste 9 &ecrease& %it" &isease pro$ress.
S#ell 9 &ecrease& %it" &isease pro$ress.
Si$"t 9(l'rri!$ of *isio!
9(li!- re:e a(se!t
9eyeli&s re#ai! "alf ope!
INTEGL7ENTARD SDSTE7
12
9Col& cla##y s-i!
9cya!oses o! !ose, !ail (e&s
9@%a li-e s-i!A %"e! *ery !ear to &eat".
RESPIRATORD SDSTE7
9I!crease& respiratory rate
9c"ey!e stro-e respiratio! )alter!ati!$ perio&s of ap!oea, &eep
a!& rapi& (reat"i!$,
9irre$'lar (reat"i!$ $ra&'ally slo%i!$ &o%! to ter#i!al $asps
)$'ppy (reat"i!$,
9!oisy %et so'!&i!$ )&eat" rattle,
LRINARD SDSTE7
9Gra&'al &ecrease i! 'ri!ary o'tp't
9'ri!ary i!co!ti!e!ce or '!a(le to 'ri!ate
GASTROINTESTINAL SDSTE7
9Acc'#'latio! of $as
9&iste!sio! a!& !a'sea
9loss of sp"i!cter co!trol
9possi(le cessatio! of GI f'!ctio!
9(o%el #o*e#e!t #ay occ'r (efore i##i!e!t &eat" or at t"e
ti#e of &eat".
7LSCLLOSMELETAL SDSTE7
9Gra&'al loss of a(ility to #o*e
9loss of $a$ re:e
9sa$$i!$ of 0a% res'lts i! loss of facial #'scle to!e, &ysp"a$ia,
&i4c'lty i! spea-i!$
CADIOVASCLLAR SDSTE7
9I!crease& "eart rate1 later slo%i!$
9irre$'lar r"yt"#s
9&ecrease& (loo& press're
9%ea-e!i!$ of p'lse
PSYCOSOCIAL MANIFESTATIONS
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A *ariety of feeli!$s a!& e#otio!s a2ect t"e &yi!$ patie!ts at t"e e!&
of life care. T"ey are
Altere& &ecisio! #a-i!$
6ear of lo!eli!ess
fear of pai!
Helpless!ess
Restless!ess
A!iety
I#pe!&i!$ &oo#
Visio! li-e eperie!ces
Grief
ASPECTS OF END OF LIFE CARE
T"e i#porta!t aspects of e!& of life care i!*ol*es
i. Palliati*e care
ii. Preparatio! at t"e e!& of life care
iii. A&*a!ce& &irecti*es
i*. L!&ersta!&i!$ CPR a!& DNR
*. Care &'ri!$ t"e /!al &ays
*i. Hospice care
1. PALLIATIVE CARE
DE6INITION
T"e palliati*e care #ea!s ta-i!$ care of t"e %"ole perso!9
(o&y, #i!& a!& spirit, "eart a!& so'l. Palliati*e care is so#eti#es
calle& "ospice care. To&ay, &octors are a(le to c're #a!y people
&ia$!ose& %it" ca!cer. If a c're is !ot possi(le, so#e people recei*e
treat#e!t to #a!a$e t"e sy#pto#s a!& si&e e2ects of ca!cer a!& its
treat#e!t. T"is type of treat#e!t is calle& palliati*e care.
PLRPOSES
Treati!$ pai! a!& all ot"er p"ysical sy#pto#s ca'se& (y &isease
a!& its treat#e!ts.
A&&ressi!$ a perso!.s spirit'al !ee&s a!& co!cer!s.
A&&ressi!$ a!& treati!$ a perso!.s psyc"osocial !ee&s s'c" as
copi!$ %it" c"a!$es i! (o&y i#a$e a!& &epressio!.
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Pro*i&i!$ s'pport for t"e patie!t.s fa#ily, frie!&s a!& care
$i*ers.
PRINCIPLES O6 PALLIATIVE CARE
I. palliati*e care respects t"e $oals, li-es, a!& c"oices of t"e &yi!$
perso! a!& "is or "er lo*e& o!es..."elpi!$ t"e# to '!&ersta!&
t"e ill!ess a!& %"at ca! (e epecte& fro# it, a!& to /$'re o't
%"at is #ost i#porta!t &'ri!$ t"e ti#e.
II. Palliati*e care loo-s after t"e #e&ical, e#otio!al, social a!&
spirit'al !ee&s of t"e &yi!$ perso! %it" a foc's o! #a-i!$ s're
"e or s"e is co#forta(le, !ot left alo!e, a!& a(le to loo- (ac- o!
"is or "er life a!& /!& peace.
III. Palliati*e care s'pports t"e !ee& of fa#ily #e#(ers, "elpi!$
t"e# %it" t"e respo!si(ilities of care $i*i!$ a!& e*e! s'pporti!$
t"e# as t"ey $rie*e.
IV. Palliati*e care "elps to $ai! access to !ee&e& "ealt" care
pro*i&ers a!& appropriate care setti!$s i!*ol*i!$ *ario's -i!&s of
trai!e& pro*i&ers i! &i2ere!t setti!$s, tailore& to t"e !ee&s of t"e
patie!t a!& "is or "er fa#ily.
V. Palliati*e care ('il&s a %ay to pro*i&e ecelle!t care at t"e e!&
of life t"ro'$" e&'catio! of care pro*i&ers, appropriate "ealt"
policies, a!& a&e3'ate f'!&i!$ fro# i!s'res a!& t"e $o*er!#e!t.
THE PALLIATIVE CARE TEA7
Se*eral "ealt" care professio!als #ay participate as part of a tea# to
$i*e palliati*e care. T"e tea# #e#(ers i!cl'&es,
DOCTOR1 T"e &octor ser*es as t"e "ealt" care tea# lea&er,
#a-es treat#e!t pla!s a!& &eci&es o! #e&icatio! a!& &osi!$
a!& #ay co!s'lt %it" ot"er &octors, s'c" as pai! specialist or a
ra&iatio! o!colo$ist.
15
NLRSES1 T"e !'rse $i*es &irect care to t"e patie!t a!& "elps
%it" #a!a$i!$ pla! a!& ot"er si&e e2ects of ca!cer a!& its
treat#e!t. T"e !'rse also acts as a laiso! %it" t"e rest of t"e
"ealt" care tea# #e#(ers. 6or people i! "o#e "ospice
pro$ra##e, !'rses *isit t"e# at "o#e se*eral ti#es a %ee- a!&
so#eti#es #ore t"a! o!ce a &ay.
SOCIAL WORMER1 A social %or-er #ay "elp %it" /!a!cial iss'es?
arra!$e fa#ily #eeti!$s a!& "elps %it" &isc"ar$e fro# "o#e or
"ospice care.
SPIRITLAL ADVISORS1 A c"aplai! or ot"er spirit'al a&*isors
co'!sel t"e patie!t a!& fa#ily #e#(ers o! reli$io's a!&
spirit'al #atters.
DIETITIAN1 A &ieticia! "elps t"e patie!t a!& fa#ily #e#(ers to
pla! "ealt"y #eals a!& a&&resses !'tritio!al co!cer!s.
PHDSIOTHERAPIST1 A p"ysiot"erapist "elps t"e patie!t to
#ai!tai! #o*e#e!t a!& "elps %"e! t"e patie!t "as &i4c'lty i!
#o*i!$ aro'!&, a!& also a&&resses social co!cer!s at "o#e.
GRIE6 AND 8EREAVE7ENT CO.ORDINATOR1 T"is professio!al
co'!sels t"e patie!t a!& fa#ily #e#(ers a!& "elp %it" pla!!i!$
a!& #e#orial ser*ices.
PALLIATIVE CARE SETTINGS
As t"e !ee&s of e*ery fa#ily a!& fa#ily #e#(er *ary, a!& as
&i2ere!t care setti!$s prese!t. palliati*e care is pro*i&e& i! "o#e a!&
"ospital also.
I, ()& )10.+('3 0&((+,-0
Despite t"e eco!o#ic a!& "'#a! costs associate& %it" &eat"
i! t"e "ospital setti!$s, as #a!y as HNOof all &eat"s occ'r i! t"e ac'te
care setti!$s. It is clear t"at #a!y patie!ts %ill co!ti!'e to opt for
"ospital care or &efa'lt %ill /!& t"e#sel*es i! "ospital setti!$s at t"e
e!& of life care. I!creasi!$ly, "ospitals are co!&'cti!$ syste# %i&e
assess#e!ts of e!& of life care practices a!& o'tco#es a!& are
&e*elopi!$ i!!o*ati*e #o&els for &eli*eri!$ "i$" 3'ality, perso!
16
ce!tre& care to t"e patie!ts approac"i!$ t"e e!& of life. Hospitals cite
co!si&era(le /!a!cial (arriers to pro*i&i!$ "i$" 3'ality palliati*e care
i! ac'te care setti!$s. P'(lic policy c"a!$es "a*e (ee! calle& for t"at
%o'l& pro*i&e rei#('rse#e!t to "ospitals for care &eli*ere& *ia
&esi$!ate& "ospital %i&e palliati*e care (e&s, cl'stere& palliati*e care
'!its or palliati*e care co!s'ltatio! ser*ices i! ac'te care setti!$s.
I, ()& )15& 6'/& 0&((+,-0
W"ere e*er t"e patie!t #ay 'lti#ately &ie, t"ey are li-ely to
spe!& #ost of t"eir last year of life i! t"eir o%! "o#e (ei!$ care& for
(y close fa#ily #e#(ers. W"e! t"e patie!t a!& t"e fa#ily.s "opes are
foc'sse& o! allo%i!$ t"e patie!t to &ie i! "is or "er o%! "o#e ,t"e
!'rses !ee& to (e ac'tely se!siti*e to t"e s"ifti!$ !ee&s of t"e cari!$
fa#ily. S'pport fro# palliati*e care cli!ical !'rse specialists s'c" as
7ac#illa! !'rses a!&Por accessi!$ t"e 7arie c'rie !'rsi!$ ser*ice to
pro*i&e ete!&e& perio&s of care i! t"e "o#e, ofte! o*er!i$"t ,ca!
pro*i&e cr'cial s'pport to t"e fa#ily, per"aps a*oi&i!$ late crisis
a&#issio! to "ospital &'e to care $i*er strai!. 6or people i! "o#e
"ospice pro$ra##e, !'rses *isit t"e# at "o#e se*eral ti#es a %ee-
a!& so#eti#es #ore t"a! o!ce a &ay.
PALLIATIVE SEDATION AT THE END O6 LI6E
Alt"o'$" palliati*e se&atio! re#ai!s co!tro*ersial, it is
o2ere& i! so#e setti!$s to patie!ts %"o are close to &eat" or %"o
"a*e sy#pto#s t"at &o !ot respo!& to co!*e!tio!al p"ar#acolo$ic or
!o! p"ar#acolo$ical approac"es. T"e palliati*e se&atio! to relie*e
sy#pto#s, !ot to "aste! &eat" it is #ost co##o!ly 'se& %"e! t"e
patie!t e"i(its i!tracta(le pai!, &ysp!oea, sei5'res or &eliri'#. 8efore
i#ple#e!ti!$ palliati*e se&atio!, t"e "ealt" care tea# s"o'l& asses
for t"e prese!ce of '!&erlyi!$ a!& treata(le ca'ses of s'2eri!$ s'c"
17
as &epressio! or spirit'al pai!. 6i!ally t"e patie!t a!& fa#ily s"o'l& (e
f'lly i!for#e& a(o't t"e 'se of t"is treat#e!t.
E$1 I!f'sio! of (e!5o&ia5epi!e or (ar(it'rates i! &oses a&e3'ate to
i!&'ce sleep a!& eli#i!ate si$!s of &isco#fort.
O!ce se&atio! "as (ee! i!&'ce&, t"e !'rse s"o'l& co!ti!'e
to co#fort to t"e patie!t, #o!itor t"e p"ysiolo$ical e2ect of t"e
se&atio!, s'pport t"e fa#ily are a!& e!s're t"e co##'!icatio! %it"i!
t"e "ealt" tea# a!& (et%ee! t"e tea# a!& t"e fa#ily.
$. PREPARATION AT TE END OF LIFE CARE
Despite t"e &octor.s (est e2orts a!& "ar& %or-, &isease
treat#e!t so#eti#es stops %or-i!$ a!& a c're or lo!$er ter#
re#issio! is !o lo!$er possi(le. T"is sta$e of ill!ess is calle& a&*a!ce&,
ter#i!al or e!& sta$e. T"is sta$e i!cl'&es,
GRIEVING DOLR LOSSES
Lear!i!$ t"at perso!s ill!ess "as (eco#e ter#i!al ca! (ri!$
a(o't i!te!se feeli!$s of a!$er, fear $rief, re$ret a!& ot"er
stro!$ e#otio!s.
Tal-i!$ a(o't feeli!$s a!& co!cer!s %it" fa#ily, frie!&s a!&
care$i*ers ca! "elp (ri!$ yo' co#fort.
It is !or#al to $rie*e a!& #o'r! t"e loss of yo'r a(ilities, t"e
lo*e& o!es yo' %ill lea*e (e"i!&, a!& t"e &ays yo' %ill !ot "a*e.
GETTING A66AIRS IN ORDER
Setti!$ yo'r a2airs i!cl'&e locati!$ a!& or$a!i5i!$ i#porta!t
le$al a!& /!a!cial &oc'#e!ts, s'c" as %ill, #arria$e a!& (irt"
certi/cates, social sec'rity car&, i!s'ra!ce policies, (a!-
state#e!ts a!& i!*est#e!t s'##aries.
So#e people also /!& it "elpf'l to pla! so#e aspects of t"eir
o%! f'!eral. T"is ca! (e &o!e %it" set of %ritte! i!str'ctio!s or
tal-i!$ to fa#ily or close frie!&s a(o't yo'r %is"es.
18
As %e approac" t"e e!& of yo'r life t"ere #ay (e certai! t"i!$s
yo' %is" to acco#plis" i! t"e ti#e yo' "a*e left. T"ese tas-s
ca! "elp to (ri!$ a se!se of #ea!i!$ a!& co#pletio! to yo'r life,
a!& #ay ra!$e fro# f'l/lli!$ a lifelo!$ &rea# to #ore si#ple
eperie!ces s'c" as rerea&i!$ a fa*o'rite (oo- or spe!&i!$ ti#e
%it" t"ose %"o are i#porta!t to yo'.
REVIEWING DOLR LI6E
It is o!ly !at'ral to %a!t to lea*e a le$acy? e*i&e!ce t"at yo'r
life #attere& a!& t"at yo' #a&e a &i2ere!ce i! t"e %orl&.
Ta-e ti#e to re:ect o! a!& cele(rate t"e e*e!ts i! yo'r life9t"e
t"i!$s yo' "a*e acco#plis"e&, t"e people yo' "a*e lo*e&, t"e
i!&i*i&'als a!& e*e!ts t"at "a*e s"ape& yo'.
Tal-i!$ a(o't or recor&i!$ yo'r %is"es a!& &rea#s for lo*e&
o!es i! t"e f't're ca! "elp ease re$rets a(o't "a*i!$ to lea*e
t"e#, a!& "elp t"e# feel co!!ecte& to yo' at i#porta!t ti#es
t"ro'$"o't t"eir li*es.
RELIGION AND SIRITLALITD
T"e spirit'ality is a -ey co#po!e!t of co#pre"e!si*e !'rsi!$
for ter#i!ally ill patie!ts a!& t"eir fa#ilies. I!cl'&e co'!selli!$ to
patie!t a!& fa#ily #e#(ers. Spirit'al !ee&s &o !ot !ecessarily e3'ate
to reli$io!. A perso! #ay (e of !o partic'lar fait" ('t "a*e a &eep
spirit'ality. So#e patie!ts #ay c"oose to p'rs'e a spirit'al pat" so#e
#ay !ot. So t"eir i!&i*i&'al !ee&s to (e respecte&. T"e patie!t.s a!&
fa#ily.s prefere!ces relate& to spirit'al $'i&a!ce or pastoral care
ser*ices s"o'l& (e !ote&.
E$1 Gi*i!$ a!oi!t#e!t.
6or so#e, or$a!ise& reli$io! is a ce!tral part of life a!& t"e
s'pport of fait" a!& cler$y #e#(ers are a! i#porta!t so'rce of
co#fort at t"e e!& of life. 6or ot"ers, spirit'al co#fort #ay lie i! a
19
se!se of co!!ectio! to !at're or people. W"at #atters is /!&i!$ s'c"
co#fort, co#pletio!, peace %"ic" %ill s'stai! "ope a!& #ea!i!$.
4. ADVANCED DIRECTIVES
I! ;<<; t"e O#!i('s reco!ciliatio! act of;<<N (eca#e
e2ecti*e. It is fre3'e!tly -!o%! as t"eA Patie!t self &eter#i!atio! actA.
T"is act re3'ires all i!stit'tio!s t"at participate i! 7e&icare to pro*i&e
%ritte! i!for#atio! to patie!t.s co!cer!i!$ t"eir ri$"t to accept or
ref'se treat#e!t. T"is i!for#atio! s"o'l& i!cl'&e t"e ri$"t to i!itiate
a&*a!ce &irecti*es. A&*a!ce &irecti*es are t"e le$al &oc'#e!ts t"at
eplai! t"e -i!& of #e&ical treat#e!t %o'l& %a!t a!& %o'l& !ot %a!t
if yo' (eco#e '!a(le to #a-e t"ese &ecisio!s for yo'rself. A&*a!ce
&irecti*es protect clie!t.s ri$"ts a!& prefere!ces for t"e #e&ical
treat#e!t a!& &i#i!is" t"e ('r&e! of fa#ily #e#(ers a!& t"e ot"er
care$i*ers #a-i!$ &ecisio! for clie!t. It protect t"e ri$"ts a!&
prefere!ces for t"e #e&ical treat#e!t (y %riti!$ &o%! t"e clie!t.s
%is"es i! a! a&*a!ce &irecti*e a!& "a*i!$ a %it!ess or %it!esses si$!
t"e state#e!t.
TDPES O6 ADVANCE DIRECTIVES
T"e #ost co##o! type s of a&*a!ce &irecti*es are t"e t"e
li*i!$ %ill a!& t"e
&'ra(le po%er of attor!ey for "ealt" care.
LIVING WILL
A type of a&*a!ce &irecti*e i! %"ic" t"e i!&i*i&'al &oc'#e!ts
treat#e!t prefere!ces. It pro*i&es i!str'ctio!s for care i! t"e e*e!t
t"at t"e si$!er is ter#i!ally ill a!& !ot a(le to co##'!icate "isP"er
%is"es &irectly a!& ofte! is acco#pa!ie& (y a &'ra(le po%er of
attor!ey for "ealt" care. T"is is also -!o%! as a #e&ical &irecti*e or
20
treat#e!t &irecti*e or &irecti*e to p"ysicia!s a!& fa#ily.. A li*i!$ %ill
ca! i!cl'&e t"e state#e!ts a(o't
W"et"er clie!t %a!t t"e #e&ical tea# to 'se car&iop'l#o!ary
res'scitatio!)CPR, a!& or arti/cial life s'pport s'c" as
#ec"a!ical *e!tilator, if (reat"i!$ or "eart stops.
W"et"er yo' %a!t to recei*e a fee&i!$ t'(e, if yo' ca!!ot (e fe&
ot"er%iseB
W"et"er clie!t %a!t certai! proce&'res s'c" as &ialysis.
DLRA8LE POWER O6 ATTORNED 6OR HEA LTH CARE
It is a le$al &oc'#e!t t"ro'$" %"ic" t"e si$!er appoi!ts a!&
a't"ori5es a!ot"er i!&i*i&'al to #a-e &ecisio!s o! "is or "er (e"alf
%"e! "ePs"e is !o lo!$er a(le to spea- for "i#P"erself. T"e perso!.s
appoi!t is ofte! referre& to as "eat" care proy, a$e!t or attor!ey i!9
fact a!& "as a't"ority o!ly o*er #e&ical &ecisio!s, !ot ot"er #atters
s'c" as /!a!ces. T"is is also -!o%! as a "ealt" care po%er of attor!ey
or a proy &irecti*e. A!y co#pete!t a&'lt, a$e #ore t"a!;Fyrs or ol&er
ca! (e a "ealt" care a$e!t. O!ce yo' c"oose a "ealt" care a$e!t yo'
ca! still #a-e yo'r o%! &ecisio!s a(o't yo'r #e&ical care1 yo'r "ealt"
care a$e!t %ill o!ly #a-e &ecisio!s o!ce yo' are '!a(le to &o so.
O!ce yo' #a-e a! a&*a!ce &irecti*e, yo' ca! c"a!$e it if !ee&e&.
C"a!$es ca! #a&e as lo!$ as yo' still "a*e or re$ai! yo'r a(ility to
#a-e &ecisio!s a!& s"o'l& !otify "ealt" care tea# if a!y c"a!$es
#a&e.
4. UNDERSTANDING CPR AND DNR
CPR is a co#(i!atio! of c"est co#pressio!s a!& resc'e
(reat"i!$ t"at is $i*e! to a perso! i! car&iac arrest. W"e! a perso!
$oes to car&iac arrest, t"e "eart stops p'#pi!$ (loo& t"ro'$"
(o&y.CPR ca! te#porarily "elp a s#all a#o'!t of (loo& :o% to t"e
"eart a!& (rai! '!til t"e "eart (e$i!s (eati!$ a$ai!.CPR #ay i!cl'&e
t"e follo%i!$1
21
7a!'al c"est co#pressio!.
De/(rillatio!
Gi*i!$ &r'$s to sti#'late t"e "eart
7o't" to #o't" (reat"i!$
I!sertio! of a! arti/cial air%ay
A DNR or&er is a type of a&*a!ce &irecti*e a!& it is t"e
%ritte! p"ysicia!.s or&er i!str'cti!$ "ealt" care pro*i&ers !ot to
atte#pt CPR a!& it is ofte! re3'este& (y patie!t a!& fa#ily. A Q!o co&e
Qor DNR or&er allo%s t"e perso! to &ie %it" co#fort #eas'res o!ly a!&
%it"o't t"e i!terfere!ce of t"e tec"!olo$y. A !e% ter# (ei!$ 'se& to
replace Q!o co&e. or DNR is t"e ter# allo%e& !at'ral &eat" )AND,.t"is
ter# #ore acc'rately co!*eys %"at act'ally "appe!s. It is also
so#eti#es referre& to as Qco#fort co&e. stat's, #ea!i!$ t"at all
co#fort #eas'res associate& %it" pai! co!trol a!& sy#pto#
#a!a$e#e!t are carrie& o't. Ho%e*er, t"e !at'ral p"ysiolo$ical
pro$ressio! to &eat" is !ot &elaye& or i!terr'pte&. L!li-e ot"er
a&*a!ce &irecti*es t"at are %ritte! a!& si$!e& (y t"e i!&i*i&'al, a DNR
or&er #'st (e co#plete& a!& si$!e& (y &octor or ot"er "ealt" care
pro*i&er, s'c" as "ospice !'rse practio!er. O!ce co#plete& it s"o'l&
(e a&&e& to t"e #e&ical recor&.
I&eally, &ecisio!s a(o't e!& of life care s"o'l& (e #a&e early
i! t"e care process (efore t"ere is a !ee& for t"e#. If %ait '!til a crisis
occ'rs, it #ay (e too late for co##'!icate yo'r %is"es a(o't a DNR
or&er or ot"er a&*a!ce &irecti*es. Ho%e*er, #a!y p"ysicia!s are
rel'cta!t to %rite t"ese or&ers, especially %"e! t"is iss'e is a so'rce of
co!:ict (et%ee! t"e patie!t a!& fa#ily or (et%ee! i!&i*i&'al fa#ily
#e#(ers.
5. CARE DURING FINAL DAYS
If treat#e!t is !o lo!$er a(le to slo% or "alt t"e $ro%t" of
t"e &isease, t"e &isease &e*elops %"at is -!o%! as a&*a!ce& or e!&
22
sta$e. Treat#e!t for e!& sta$e foc'ses o! -eepi!$ t"e perso!
co#forta(le a!& free of pai! as "e or s"e approac"es t"e e!& of life.
E*e! if a c're or lo!$ ter# re#issio! is !o lo!$er possi(le, t"e perso!
still "as t"e c"oices for care. So#e people &eci&e to stop acti*e
treat#e!ts )e.$.1 c"e#ot"erapy,,ot"er people #ay recei*e a&&itio!al
#e&ical treat#e!ts a!& to co!ti!'e (ot" palliati*e a!& acti*e care a!&
#a!y of t"e# &eci&e to e!ter "ospice care. Care &'ri!$ /!al &ays
i!cl'&e,
P/17+%+,- 61541/(
Co#fort #eas'res &'ri!$ t"e e!& of life i!cl'&es,
Lse foa# c's"io!s to #a-e (e&s a!& c"airs #ore co#forta(le
a!& "elp t"e patie!t to c"a!$e positio!s fre3'e!tly a!& c"a!$e
t"e (e& li!e!s as !ecessary.
Ele*ate t"e patie!t.s "ea& or t'r! t"e patie!t o! "is or "er si&e
to "elp #a-e (reat"i!$ easier.
Lse (la!-ets to "elp -eep t"e perso! %ar# + $e!tly r'( t"e
perso!.s "a!&, feet or soa- t"e "a!&s a!& feet i! %ar# %ater.
A $e!tle #assa$e ca! (e co#forti!$ a!& ca! "elp %it" (loo&
circ'latio! a!& &ry s-i!. Lse a lotio! %it"o't alco"ol, %"ic"
te!&s to f'rt"er &ry s-i!.
O2er sips of li3'i& t"ro'$" a stra% or fro# a spoo! to "elp to
-eep t"e #o't" #oist. Glyceri!e s%a(s a!& lip (al# also "elp
%it" &ry #o't" a!& lips.
C1,(/133+,- .'+,
Co!trolli!$ pai! is a! i#porta!t part of &yi!$ co#forta(ly a!&
peacef'lly.
A&#i!ister #e&icatio!s aro'!& t"e cloc- i! a ti#ely #a!!er a!&
o! a re$'lar (asis to pro*i&e co!sta!t relief rat"er t"a! %aiti!$
'!til t"e pai! is '!(eara(le.
Co!ce!trate& #orp"i!e sol'tio! ca! (e *ery e2ecti*e (y
&eli*ere& (y t"e s'(li!$'al ro'te.
23
I! case of '!co!trolle& pai!, palliati*e se&atio!.
R&0.&6(+,- 8,'3 9+0)&0
T"e !'rse !ee&s to (e a%are of %is"es of patie!t a!& fa#ily
#e#(ers. 6or ea#ple, so#e people !eari!$ t"e e!& of life c"oose !ot
to recei*e arti/cial life s'pport )e$? *e!tilators, fee&i!$ t'(es etc,, a!&
#ay re3'est a DNR or&er. Care $i*ers a!& ot"ers %"o care a(o't t"e
perso! #ay !ot al%ays a$ree %it" t"e &ecisio!s o'tli!e& i! a! a&*a!ce
&irecti*e. Ho%e*er, "a*i!$ a patie!t.s /!al %is"es respecte& a!&
follo%e& is a! i#porta!t !ee& for people %it" a! a&*a!ce& ill!ess.
6. OSPICE CARE
Hospice is !ot a place ('t a co!cept of care t"at pro*i&es
co#passio!, co!cer!, a!& s'pport for &yi!$. Hospice a!& palliati*e
care are fre3'e!tly 'se& i!terc"a!$ea(ly. Hospice eists to pro*i&e
s'pport a!& care for perso! i! t"e last p"ases of t"e i!c'ra(le &iseases
so t"at t"ey #i$"t li*e as f'lly a!& as co#forta(le as possi(le. Hospice
care pro$ra##es pro*i&e #'lti&iscipli!ary care at t"e e!& of life %it"
e#p"asis o! sy#pto# #a!a$e#e!t, a&*a!ce care pla!!i!$, spirit'al
care, fa#ily s'pport, i!cl'&i!$ (erea*e#e!t.
Hospice care is $e!erally pro*i&e& i! t"e "o#e, %it"
i!patie!t care reser*e& for ac'te pai! #a!a$e#e!t or respite care for
fa#ilies or care $i*ers i! !ee& of a (rea-. Ho#e care is pro*i&e& o! a
part ti#e, i!ter#itte!t, o! call, re$'larly sc"e&'le& or co!ti!'o's (asis
.Hospice care ser*ices are a*aila(le C>"rs a &ay a!& K &ays a %ee- to
pro*i&e "elp to patie!ts a!& fa#ilies i! t"eir "o#es. T"e i!patie!t
"ospice setti!$s "a*e (ee! &ei!stit'tio!alise& to #a-e t"e at#osp"ere
as relae& a!& "o#eli-e as possi(le.
C/+(&/+' 41/ )10.+6& 6'/&
24
A&#issio! to a "ospice care pro$ra##e "as t%o criteria
.6irst t"e patie!t #'st &esire t"e ser*ices? seco!&, a p"ysicia! #'st
certify t"at t"e patie!t "as = #o!t"s or less to li*e. Hospice ca! "elp
(y foc'ssi!$ o! i!&i*i&'als !ee& a!& $oals. Hospice care allo%s a
perso! to approac" t"e e!& of life %it" co!/&e!ce, co#fort, peace a!&
&i$!ity.
C15.'/+,- .'33+'(+7& 6'/& ',% )10.+6& 6'/&
Alt"o'$" t"e ter# palliati*e care a!& "ospice care are
so#eti#es 'se& i!terc"a!$ea(ly, t"ey "a*e sli$"tly &i2ere!t
#ea!i!$s. Palliati*e care applies to e*ery steps of ca!cer process.
Palliati*e care is t"e fra#e %or- for "ospice care. Palliati*e care starts
#'c" earlier i! a &isease process %"ere as "ospice is tra&itio!ally is
li#ite& to t"e pro0ecte& last si #o!t"s of life.
T)& )10.+6& (&'5
6or "ospice to (e s'ccessf'l i! ac"ie*i!$ its $oals, it
re3'ires a &isc'ssio! a#o!$ patie!t, His or "er care $i*ers a!& a
*ariety of #e&ical, !'rsi!$ a!& ot"er "ealt" care professio!als. T"e
#e#(ers i!cl'&e
A &octor %"o ser*es as t"e #e&ical &irector of t"e tea#.
N'rses %"o pro*i&e &irect care a!& case #a!a$e#e!t.
Ho#e "ealt" ai&es i!cl'&i!$ (at" ai&s to assist %it" (asic !ee&s.
Social %or-ers.
C"aplai!s a!& pastoral care co'!sellors
P"ysical, occ'patio!al a!& re"a(ilitatio! t"erapists.
Dieticia!s
Trai!e& "ospice *ol'!teers
8erea*e#e!t co'!sellors
7ost "ospice care is pro*i&e& i! patie!t.s o%! "o#e, also care
o'tsi&e t"e "o#e. Also 7e&icare "ospice (e!e/ts are also a*aila(le. It
is a fe&eral "ealt" i!s'ra!ce pro$ra##e for people of a$e =Hyrs a!&
ol&er, so#e &isa(le& people '!&er =Hyrs a!& people of all a$es %it"
e!& sta$e re!al &iseases.
25
NURSING MANAGEMENT: END OF LIFE CARE
6OR PAIN
Pai! #ay (e a #a0or sy#pto# associate& %it" ter#i!al ill!ess
a!& t"e o!e of t"e #ost feare&. Pai! ca! (e ac'te or c"ro!ic.
N:/0+,- I,(&/7&,(+1,0
Asses t"e pai! t"oro'$"ly a!& &eter#i!e t"e 3'ality, i!te!sity,
locatio!, a!& co!tri('ti!$ factors.
7i!i#i5e possi(le irrita!ts s'c" as s-i! irritatio!s fro# %et!ess,
"eat or col& a!& press're.
A&#i!ister #e&icatio!s aro'!& t"e cloc- i! a ti#ely #a!!er a!&
o! a re$'lar (asis to pro*i&e co!sta!t relief rat"er t"a! %aiti!$
'!til t"e pai! is '!(eara(le.
Pro*i&e co#ple#e!tary a!& alter!ati*e t"erapies s'c" as
#assa$e, ac'press're, t"erape'tic to'c" relaatio! tec"!i3'es
as !ee&e&.
E*al'ate t"e e2ecti*e!ess of pai! relief #eas'res fre3'e!tly to
e!s're t"at t"e patie!t is o! correct a&e3'ate &r'$ re$i#e!.
Do !ot &elay or &e!y pai! relief #eas'res to a ter#i!ally ill
patie!t.
6OR DDSPHAGIA
It #ay occ'r (eca'se of etre#e %ea-!ess a!& c"a!$es i! le*el
of co!scio's!ess.
N:/0+,- I,(&/7&,(+1,0
I&e!tify t"e least i!*asi*e alter!ati*e ro'tes of a&#i!istratio! for
&r'$s !ee&e& for sy#pto# #a!a$e#e!t.
S'ctio! orally as !ee&e&.
6OR DEHDDRATION
26
7ay occ'r &'ri!$ t"e last &ays of life. As t"e &eat" approac"es,
patie!t te!& to ta-e i! less foo& a!& :'i&.
N:/0+,- I,(&/7&,(+1,0
Asses t"e co!&itio! of #'co's #e#(ra!e fre3'e!tly to pre*e!t
ecessi*e &ry!ess, %"ic" ca! lea& to &isco#fort.
7ai!tai! co#plete, re$'lar oral care to pro*i&e for co#fort a!&
"y&ratio! of t"e #'co's #e#(ra!es.
Do !ot force t"e patie!t to eat or &ri!-.
E!co'ra$e t"e co!s'#ptio! of ice c"ips a!& sips of :'i&s or 'se
#oist clot"es to pro*i&e #oist're to t"e #o't".
Apply l'(rica!t to t"e lips a!& oral #'co's #e#(ra!e as
!ee&e&.
Reass're fa#ily t"at cessatio! of foo& a!& :'i& i!ta-e is !at'ral
part of t"e processes of &yi!$.
6OR DDSPNEA
Acco#pa!ie& (y fear of s'2ocatio! a!& a!iety or '!&erlyi!$
&isease process ca! eacer(ate &ysp!oea. Co'$"i!$ a!&
epectorati!$ secretio!s (eco#e &i4c'lt.
N:/0+,- +,(&/7&,(+1,0
Assess respiratory stat's re$'larly.
Ele*ate t"e "ea& a!&Por positio! o! si&e to i#pro*e c"est
epa!sio!.
Lse a fa! or air co!&itio!er to facilitate #o*e#e!t of cool air.
A&#i!ister s'pple#e!tal oy$e! as or&ere&.
A&#i!ister &r'$s as prescri(e&.
S'ctio! as !ee&e& to re#o*e acc'#'latio! o #'c's fro# t"e
air%ays. S'ctio!i!$ is 'se& ca'tio'sly i! ter#i!al p"ase.
6OR WEAMNESS AND 6ATIGLE
It is epecte& at t"e e!& of life. 7eta(olic &e#a!&s relate& to
&isease process co!tri('te to %ea-!ess a!& fati$'e.
27
N:/0+,- +,(&/7&,(+1,0
Assess t"e patie!t.s tolera!ce for acti*ities.
Ti#e !'rsi!$ i!ter*e!tio!s to co!ser*e e!er$y.
Assist t"e patie!t to i&e!tify a!& co#plete &esire& acti*ities.
Pro*i&e fre3'e!t rest perio&s.
6OR SMIN 8REAMDOWN
S-i! i!te$rity is &i4c'lt to #ai!tai! at t"e e!& of life. I##o(ility,
'ri!ary a!& (o%el i!co!ti!e!ce, &ry s-i!, !'tritio!al &e/cits, a!ae#ia,
frictio! a!& s"eari!$ forces lea& to a "i$" ris- for s-i! (rea-&o%!. As
&eat" approac", circ'latio! to t"e etre#ities &ecreases a!& t"ey
(eco#e cool #ottle& a!& cya!otic.
N:/0+,- +,(&/7&,(+1,0
Assess t"e s-i! for t"e si$!s of (rea- &o%!.
I#ple#e!t protocols to pre*e!t s-i! (rea-&o%! (y co!trolli!$
&rai!a$e a!& -eepi!$ t"e s-i! a!& a!y %o'!& areas clea!.
6ollo% appropriate !'rsi!$ #a!a$e#e!t protocol for a patie!t
%"o is i##o(ile.
Lse (la!-ets to co*er for %ar#t"? !e*er apply "eat.
Pre*e!t t"e e2ects of s"eari!$ forces.
6OR I7PAIRED 8OWEL PATTERNS
Co!stipatio! ca! (e ca'se& (y i##o(ility, 'se of opioi&s, lac- of
/(res i! t"e &iet a!& &e"y&ratio!. Also &iarr"oea #ay occ'r as
#'ssels rela or fro# a faecal i#pactio! relate& 'se of opioi&s a!&
i##o(ility.
N:/0+,- +,(&/7&,(+1,0
Assess (o%el f'!ctio!.
Assess for a!& re#o*e faecal i#pactio!s.
E!co'ra$e #o*e#e!t a!& p"ysical acti*ities as tolerate&.
E!co'ra$e /(re i! t"e &iet if appropriate.
E!co'ra$e :'i&s if appropriate.
Lse stool softe!ers, s'ppositories, laati*es or e!e#a if or&ere&.
6OR LRINARD INCONTINENCE
28
It #ay res'lt fro# &isease pro$ressio! or c"a!$es i! t"e le*el of
co!scio's!ess. As &eat" (eco#es i##i!e!t, t"e pere!!ial #'ssels
rela.
N:/0+,- +,(&/7&,(+1,0
Assess 'ri!ary f'!ctio!.
Lse a(sor(e!t pa&s for 'ri!ary i!co!ti!e!ce.
6ollo% t"e appropriate !'rsi!$ protocol for t"e co!si&eratio! for
t"e 'se of i!&%elli!$ or eter!al cat"eters.
6ollo% appropriate !'rsi!$ #a!a$e#e!t to pre*e!t s-i!
irritatio!s a!& (rea-&o%! fro# 'ri!ary i!co!ti!e!ce.
6OR ANORERA, NALSEA+VO7ITTING
Ca'se& (y co#plicatio!s of t"e &isease process or &r'$s.
Co!stipatio!, i#pactio!, (o%el o(str'ctio! ca! also ca'se a!oreia,
!a'sea a!& *o#iti!$.
N:/0+,- +,(&/7&,(+1,0
Asses t"e patie!t for co#plai!ts of !a'sea a!& *o#iti!$.
Asses possi(le co!tri('ti!$ factors of !a'sea a!& *o#iti!$.
Ha*e fa#ily #e#(ers to pro*i&e patie!t.s fa*o'rite foo&s.
Disc'ss #o&i/catio! to t"e &r'$ re$i#e! %it" t"e &octor.
Pro*i&e a!tie#etic (efore #eals if or&ere&.
O2er a!& pro*i&e fre3'e!t #eals %it" s#all portio!s of fa*o'rite
foo&s.
Pro*i&e fre3'e!t #o't" care, especially after *o#iti!$.
PSDCHOSOCIAL CARE
A *ariety of feeli!$s a!& e#otio!s a2ect t"e &yi!$ patie!t a!&
fa#ily at t"e e!& of life. 7ost patie!ts a!& fa#ilies str'$$le %it" a
ter#i!al &ia$!osis a!& t"e reali5atio! t"at t"ere is !o c're. Ti#e #ay
(e !ee&e& to process t"e i#pe!&i!$ &eat" a!& for#'late e#otio!al
29
respo!ses. T"e patie!t a!& fa#ily feel o*er%"el#e&, fearf'l, po%erless
a!& fati$'e&.
N:/0+,- +,(&/7&,(+1,0
Asses t"e psyc"olo$ical stat's of t"e patie!t.
Co!*erse as if t"e patie!t is alert, 'si!$ soft *oice a!& $e!tle
to'c".
E!co'ra$e t"e fa#ily to tal- %it" a!& reass're t"e &yi!$ perso!.
E!co'ra$e *isit (y appropriate spirit'al care pro*i&er, c"aplai! or
fa#ily #e#(ers.
Pro*i&e a roo# t"at is 3'iet, %ell li$"te&, a!& fa#iliar to re&'ce
t"e e2ects of &eliri'#, a!iety.
Reorie!t t"e &yi!$ perso! to t"e perso!, place, %it" eac"
e!co'!ter.
Stay p"ysically close to t"e fri$"te!e& patie!t
Reass're i! a cal#, soft *oice %it" to'c" a!& slo% stro-es of t"e
s-i!.
E!co'ra$e fa#ily #e#(ers to participate i! t"e care of t"e
patie!t.
Ta-e %it" co!s'lta!t a!& arra!$e for co'!selli!$.
Do!.t allo% t"e patie!t to (e alo!e, -eep "i# e!$a$e& %it" so#e
%or-.
LEGAL AND ETICAL ISSUES AFFECTING END OF LIFE
CARE
Patie!ts a!& fa#ilies str'$$le %it" #a!y &ecisio!s &'ri!$ t"e
ter#i!al ill!ess a!& &yi!$ eperie!ce. 7a!y people &eci&e t"at t"e
o'tco#es relate& to t"eir care s"o'l& (e (ase& o! t"eir o%! %is"es.
7'ltiple treat#e!t optio!s a!& sop"isticate& life s'pport tec"!olo$ies
#ay #a-e it &i4c'lt to &ra% t"e li!e (et%ee! pro#oti!$ life a!&
!ee&lessly prolo!$i!$ t"e &yi!$ process. Patie!ts "a*e a le$ally a!&
#orally protecte& ri$"t to co!se!t to a!& ref'se a!y a!& all i!&icate&
#e&ical t"erapies.
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);,.ORGAN AND TISSLE DONATON
Perso!s %"o are le$ally co#pete!t #ay c"oose or$a! &o!atio!.
A!y (o&y part or t"e e!tire (o&y #ay (e &o!ate&. T"e &ecisio! to
&o!ate or$a!s or to pro*i&e a!ato#ic $ifts #ay (e #a&e (y perso!
(efore &eat" a!& fa#ily per#issio! #'st (e o(tai!e& at t"e ti#e of
&o!atio!. 8ot" or$a! a!& tiss'e &o!atio! follo% speci/c le$al
$'i&eli!es. Le$al re3'ire#e!ts a!& facility policies for or$a! or tiss'e
&o!atio! #'st (e follo%e&. T"e p"ysicia! #'st (e !oti/e& i##e&iately
%"e! or$a! &o!atio! is i!te!&e& (eca'se so#e tiss'es #'st (e 'se&
%it"i! "o'rs after &eat".
)C,.TER7INAL WEANING
Ter#i!al %ea!i!$ is t"e $ra&'al %it"&ra%al of #ec"a!ical
*e!tilatio! fro# a patie!t %it" a ter#i!al ill!ess or a! irre*ersi(le
co!&itio! %it" a poor &ia$!osis. I! so#e cases ,a co#pete!t patie!ts
&eci&e t"at t"ey %is" t"eir *e!tilator s'pport e!&e&? #ore ofte!, t"e
s'rro$ate &ecisio! #a-ers for a! i!co#pete!t patie!t &eter#i!e t"at
co!ti!'e& *e!tilator s'pport is f'tile. A !'rses role i! ter#i!al %ea!i!$
is to participate i! t"e &ecisio! #a-i!$ process (y o2eri!$ "elpf'l
i!for#atio! a(o't t"e (e!e/ts a!& ('r&e! of co!ti!'e& *e!tilatio! a!&
&escriptio! of %"at to epect if ter#i!al %ea!i!$ is i!itiate&. S'pport
t"e patie!t.s fa#ily a!& #a!a$i!$ se&atio! a!& a!al$esia are critical
!'rsi!$ respo!si(ilities.
)E,.ELTHANASIA
E't"a!asia literally #ea!s @$oo& &yi!$.AIt is t"e &eli(erate
e!&i!$ of t"e life of perso! s'2eri!$ fro# a! i!c'ra(le &isease.
E't"a!asia #ay (e co!&'cte& passi*ely, !o! acti*ely, or acti*ely.
E't"a!asia #ay (e co!&'cte& %it" co!se!t )*ol'!tary e't"a!asia, or
%it"o't co!se!t )i!*ol'!tary,.i!*ol'!tary e't"a!asia is co!&'cte&
31
%"ere a! i!&i*i&'al #a-es a &ecisio! for ot"er perso! i!capa(le of
&oi!$ so. Passive euthanasia e!tails t"e %it""ol&i!$ of co##o!
treat#e!ts s'c" as a!ti(iotics, c"e#ot"erapy i! ca!cer or s'r$ery or
t"e &istri('tio! of #e&icatio! s'c" as #orp"i!e to relie*e pai!,
-!o%i!$ t"at it #ay also res'lt i! &eat". Passi*e e't"a!asia is #ost
accepte& for# a!& it is a co##o! practice. Non active euthanasia
e!tails t"e %it"&ra%i!$ of life s'pport. Active euthanasia e!tails t"e
'se of let"al i!0ectio! or car(o! #o!oi&e t"at forces to -ill a!& %as
&ee#e& (ot" i##oral a!& ille$al. I! t"is t"e cli!icia! acts &irectly to
ca'se t"e &eat" of t"e patie!t. Also i! assisted suicide, t"e cli!icia!
pro*i&es t"e #ea!s t"e patie!t 'se& to ca'se "er o%! &eat" )e.$.
pro*i&es a prescriptio! for a let"al &ose of (ar(it'rates,.
I! ;<<>, t"e A#erica! !'rses associatio! )ANA,iss'e& positio!
state#e!ts stati!$ t"at assisti!$ i! s'ici&e a!& participati!$ i! acti*e
e't"a!asia are i! *iolatio! of t"e co&e for !'rses , t"e et"ical tra&itio!s
a!& $oals of t"e professio! a!& its co*e!a!t %it" t"e society.
CONCLUSION
Ter#i!al ill!ess a!& &yi!$ are etre#ely perso!al e*e!ts t"at
a2ect t"e patie!t, t"e fa#ily a!& t"e "ealt" care pro*i&ers. Pro*i&i!$
care for t"e patie!ts a!& t"eir fa#ilies a!& t"e e!& of life is a
c"alle!$i!$ a!& re%ar&i!$ eperie!ce. E!& of life care o2ers a!
opport'!ity to apply t"e s-ills a!& perso!al co##it#e!t t"at t"e
!'rses (ri!$ to t"eir professio!.
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32
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<. "ttp1PPe!&o:ifecare.co.'-P0o'r!al.s"t#l
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>
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33