Ref usal of treatment
Malcolm H Parker and Bernadette Tobin
Bill, a es -vear -oic man who is a heavy smoke r, com es in to
have his ears syring ed and ca sually mentions that he has
been coughing up blood lately. You order a chest x-ray,
which shows a mass in the ti ght lower lobe . He retuses any
further inves1ig ations . How hard should you try to per suade
him otherwis e?
l"1,n.\ 1ATELY, I)F.C ISIOS S AHOU'T w hat fu r ther in vestigatio n s
B:,] un derg oes are d ecisions h e h as to ma ke for himself. N ot
pr.marily because th at's what th e law says, for on thi s ma tt er
ｴｨ ｾ Jaw m erely re flects good ethics . The legal entitle me nt to
re'use wh at a doctor prop oses reflects the fact that each com-
PLte n t adult has the responsib ility to ma ke his o r her own
d .uces in life. II ma kes no d ifference that the d oct or chinks
do : pa tient's cho ice is unwise o r wrong, for no one else ca n
ｾ Ik in Bill's shoes no r override decisions that p rope rly
b, lon g to h im . But at th is stage it is much too early for you
u nply to accept h is refu sal o f any fur th er investi gat ion s.
It is more than likely th at Bill want s you r help. H e says h e
he come to ha ve his ea rs syr in ged. Then he " casu ally" men -
tI ns th at he h as b ee n cou gh ing u p b loo d . In what s ens e is
hi comm ent Ｂ｣ ｡ ｳ ｵ ｡ ｬ Ｂｾ Afte r all, he agree s to have a chest x-
ra . and re turns for th e result s. Peop le oflen reveal what mat-
Ｑ ｾ Ｌ Ｂ most to th em in tentative or seemingly offhan d wa}"5 -
sc ne even yawn as me)' d o so! Encoura ging the kind of sen -
si".i ty toward s patients th at help s d octors [0 recogn ise th is
pheno men on is no w a stand ard part of med ical edu cation ,
even tho ugh it rem ains unclear wh ether th is sen sitivity ca n
be [aught - it rna)' in fac t de velop only with life and clini -
cal experien ce .
'X "hat lies behind Bill's initial " refusal" ? ｾ Ｇｨ ｡ｴ Ｇ ｳ on his mind?
ｈ ｾ ｾ he jum ped pr em aturely to the co nclusi on th at h e h as
cancer} If so, docs he eq ua te ca n cer with immi ne nt d eath ?
h his th inking shaped by me mories of th e ba d ti mes that
others have h ad after bei ng diagnosed with cancer? Does h e
fur being coerced to undergo trea tm ent not of h is choosing?
Doe s he anticipa te a ser iou s ope ration that wou ld crip ple
him without hold ing out any hop e for his long-term survival?
Does he fea r th at sur gery itself wil l ini tiate deterioratio n?
Does he fea r wh at he thi nks would b e involved in furth er
diagnos tic leSts? Is he clin ically de pre sse d and pessim isti c
QlIe'ensland MHleal Edue.ttion C.nn, Grad...... School
of Medkin., Unl".rUty of Queen.land, Henton, QLD.
Malcolm H p,f1t... , MB as.
MUtt (HOf'sl. Senior Lectur er
Plll nk e« c.nn tor Ethics In He.lth Care,
St Vincent'a HoapitaI, Sydney, NSW.
ｬ･Ｇｮｾ ｬｴＮ Tobin, lolA. PhD. ｏｩｾ Ｌ qu ality of life. You shou ld reassu re him that you will resp ect
ｾｰｬＱ ｮ ｴＮ Ｚ Or B Tobll'l. ｐｉｾ ｫ･ ｴｬ Cent re lOt EthiCS.
51 V"'ce of s HosPItal, OarlinQllurst, N$W 2010_
l)loblnO plunl<etl.edll ,3u
MJA VOI174 21 May 2001
• Patie nts' thoughts . feelings an d des ires are
communicated in a variety of way s, and requ ire
sympa thetic, Critical interp rete ncn .
• Patients ne ed clear, evidence -based medical
information so that they can make their own decision s
about whether to co nse nt to or refuse med ical
tre atment .
• Treatment refu sal may provide an opport unity to
introd uce patients to advance care planning _
• Unconsciou s motiva tions in doc to rs may obstruc t good
cli nica l dectslon-mekmq.
• AlthOugh respe ct for the patient's responsibihly to make
ne armcare decisions should be a condition 0 1 the
clinica l relat ionsh ip, naarthcara cectstcn- maki ng Is a
coll aborative proc ess.
MJA 2001; 174: 531 ·532
rega rd ing h is future an d the pr os pects of tr eatment?' Does
he fea r being a burden on e thers? Is he ove rwhelmed by a
se n se of his own mortality? Is he d en yin g th e possibility o f
se rious d isease? H as co ughing up b lood par alysed h im with
a fear as yet un spe cified in his own mind?
Evidence-ba sed m edicine
From a medic al po int o f view, Bill needs your help. At th is
ea rly stage. neithe r o f you knows wha t [he mass in his lu ng
is. While h is hist ory o f smo king, recent haemcpt ysis an d
presence of a radiological ma ss suggest lung cancer, the lack
of a specific d iagnosis. prevents you from provi d ing him wi th
evi d ence-b ased information that ill help him to conside r his
op tio ns dearly. Bu t, in view of h at is probab le even now,
you sho uld ind icate tha t there are significant risks associated
with not p roceedi n g, and co nsi de rable adva ntages in doing
so. Despite .....h at Bill prob ab ly th in ks, he ha s. n ot received a
sent en ce of imminent d eath , eve n if h is con d itio n is fou nd
to be inc u ra ble .
Becau se decision -ma king is unnecessa rily risk y w ithout
first makin g a d iagnosis, you sho uld explore and clarify BiU's
fea rs, beliefs and possib le mi sconceptions so thai h e m ay sec
the wisdo m of laking at least thi s next step. You sho uld
co nvey [Q h im th at, eve n if he has an inc u rable ca ncer, there
is mu ch that modern medi cin e ca n offe r him to maintain h is
h is wishes and beliefs and that you will no t u rge h im to
undergo tr eatm ent that is fu tile or overly b urde nso me , an d
n eithe r will an)' specia list to wh om yo u refer h im .
531
 :mn-- - -
Advance care planning
Sp ecific d iscussion abo ut the nature and availabihty of pal-
Hauve care m ust await the establis hm ent of a d efinitive d iag-
nosis, toget h er with a negotiated de cision tha I treatm ent
aim ed at cu re IS ina ppropriate. However, you sho uld int ro-
du ce the' idea of planninK for th e later st ali:CS of life as a rou-
tine part of your clinical management. You should explain
to Bill th at if he bec omes una ble to m ake decisions fo r him-
!Id e. th ere are means of ens uri ng tha t h is wish es concernin g
fut ure medical cafe ",'ill be respected . Thi'!. m ay help to reas-
sur e him th at em barking on invesngauo ns and treatment s
docs no l co mm it h im to cont in uin g all possible medical
treatment.
At furt her appropriate 51.218'('1 , you sho uld. en courage Hill
[ 0 ul k to his family (and 'or oth er ca ft'jitiven ) about his goa ls,
values, p references , and his rears co n cern in g tr ea tment, and
to communicate to them his wish es in case a situ ation ari ses
in which he is unable: to m ake his wi shes known . You sho uld
also encourage 8 111 to be gin thin king abo ut wh o he would
Iilce 10 m alce decision s (10 h i'! be hal f if he beca me un able: 10
do so, and about writing an adva nce he alt h dtrecuve ."
It IS probable thai HIli', imnal re fusa l o f any further inves-
uganons will d issolve in th e ｉｩｾｴ of thi s kind of co nversation ,
at lea st over time , an d you should accord in gly refer him for
appro priate specialist diai:f105is and possible treatment, Per -
haps, however, n tllA' o r al some fur ther poi nl in th e dtag-
nos nc.treaunem proc ess, he " 'ill d eclin e fu rther active
m an agem ent . At ea ch sta ge, )UUsho uld try to ens ure that he
has what in fo rm ati on and SUppo rl he n eed s to add ress h is
own specific conc ern s and make h is own decisions. w
Yo u need 10 co nvey 10 Hill Iha l his q uality o f life may
d epend on th e exte nt to wh ich he accept s m ed ical treatment
- whatever his re spo nse to this, you sho uld try to m ake sure
that his decision s ar c th e best he can make given h is par -
ncu lar circu m stances and be liefs . Th e wont th ing yo u could
do would be to ab an don ni ll to th e wild erness o f his in itial
refusa l of further inves tigations . Aga in, good ethics is here
reflected in th e law. Sever al court judgm en ts have she ....n m at
whi le: a docto r ough t no t impose his or he r view s on an
unwilling p atient, th e doctor sh ou ld keep the p atient's cu r-
rent m ed ical a'isc:ssment on the agenda so th at decisions ca n
be ma d e in the Iigh l o f th llt :nsess men t.' T h er e is no in con-
sist ency bet.....een the la.....·s req uirinlot tha t a d octor di scharge
th is duty and its rccognmon that ultimately a com pelent
adult h as the respons ibility to make his or her o w n cho ices
and deci sions in life.
ObstKles to good de cislon-m.aklng
\X'hile m any fact ors (su ch as patien ts ' beliefs and anxieties,
a lac k of con fid ence in the doctor. o r communication d iffi-
cul ties) may obs u uct th e sensitive exploratio n of a patient 's
concerns, doc tors should be a w are of two issues relatin g 10
themselves th at ma y int erfer e with the process. \1t'hen faced
wi th th e ､ ｩ｡ｧｮ ｾ ｩ ｳ of a pati ent's incurable illne ss, doct ors are
, "" Sta:es.-.d lerr_ • • ｾ T _ 6I\d ...._eon ""'-'It, .... OfOv"dlfl b' II""!'
ｾＱｉｊ｜･ｭ 01 pat _ ｾ ｳ･ｴＧｉ ＢＧｍ ｬＤ
532
- - - - - -I
so me times confronted with a sense of their own mortalrr , _
persua din g patients to contin ue tr eatment can be on e mo ns
by whi ch the y cop e with their ow n fea rs and anxieties, i\ nd
so m e d oc tors fear th at accepti ng a patient 's refusal Oh f'-l l_
m ent is tantam o un t 10 be in g a p art y 10 th e patien t's ､ ･ ｾ ｴｨ Ｌ
In both in st ances, an u nco nscio us h ut d efe nsive om rupo,
renee on th e part o f the docto r can obstruct op en neg" la,
tion of w ha t will be best for the pa tient.
A comperem penon is entitled to refuse wh at a doct or j' r1>
poses . This ide a is cen tral to medi cin e's own ethic (ProPlrty
unders tood), and ill justification " dear. H ealth, m th e Ｌｾ
o f ph ysical .....ellbeing, is o nly o ne of th e things abo ut w:- ch
ind ividuals care. Hew.' a pe rson pu rs ues h ealth, in th e L D'
text of everythin g else th ai is im portant to him o r he r, ｾ I
m ail er for each ind t\i d ual. S o on e else can do the b a lc.rc-
ing of h ealth with fam ily, career , and hfcstyle th at IS ｩｮＧｾ ｬ Ｚ ed
in Ii,;:ng one's own life as a self-d etermin in g pe rson .
The rec ent co rr ections' of pat ernalistic miscon ceptic r. of
medicine 's ethic th at han restor ed respect for the pan e :1"1
self-determ inatio n to its proper pla ce in the clii :al
en counter arc \'e ry welcome, However, we must now II' id
gom g 10 th e o pposite extrem e and m iSTaken ly thinkin of
treatment d ecisions as enti rely th e respo nsibilit)' 0 1 he
p atien t.
To respect and fu lfil ou r du tie s to patients who are 11. :If
10 be serious ly ill, we sho uld eng age them wi th cle ar I ;e'
se n ranons of the relevan t eviden ce, he lp align the im p J .
rions o f mal evide nce "id! th eir deepes t co nvicti ons, sUPi )rt
them in th ei r d eci sio ns about di agnostic p rocedures nd
treatm ent . an d rem ain with them in wh atever way ' tj
choose to live their rem ain in g life. This last du ty m ay be he
most di fficult, as we confro nt our ult imate im potence if: he
face o f o ur comm on m orulit),. But at this poi nt , we I ay
h ave m or e to learn from ou r paue n ts tha n the y d o fro rr, J5,
Adl'tO ...ｾＧ Ｚ ｬ ｨ｡ Ｂ ｾ Ｌ to 0- JoIVI lAcl"C.(le ...., Co e;.,.alO ｇｾ ro ':I-
comm.m. on." Ｎ Ｇｾ＾･ｦ (Jr,,,
References
HoOP'!' sc. ｖ Ｇｾ ｑｉＧ｡ Ｂ KJ , t"""oiI" l ce. Perl J M MAp oeo,eoslQ"a" tI '.l..e.; d
11" -..,,ta """Q me ll,cal l'eal........l 'n lh.. e lde,'V· Med J AIiSf ' 996, 'M " t ｾ ' 9,
2 8oeg1e, P, 51_ art C, ｓ･ ｾｬ･ｃ J. Soane L. DaI..m,noll9 IN ｾ ｡ ｨｬ Ｇｴｶ otoiIo-, -( .
di 'I'IC; IIVI" ......., ; AIJ$l 2OClO. 111 ｾＵ ＭＵ＼ｬＸ
J N. I'onti l'1 u .n &I'd t.l&(loC&.I ｨｊ ｬ ｾ ..cn ｃｯｶＧｬ｣ｾ Ｎ Ger>e- &1 ｧ Ｇｊｬ ｬｴ ｨ･ ｾ 10' "... ＬＧ ｾ
ｏＧＮ ｃｾ ｬ ｩ ｯ ....,. on proyidol'lg ",tormal'on 10 Poillt. " 15 Cantle... : N"l,lRC, 1!Rl
, Rogotrs ¥ ｗ＿ｉ Ｌ Ｌｾ ... [19921 1T5 Cl A ' 19
!I tao . ,...,.I',s,'. -.C..... 'eporl .c:ll NSW COurl 01 Appeal (1'5A.,glJSl 1999).
«I "e....cn .rro I .., CMo. . ... ｊ ｾ Ｎ P"nc oplell 01 tHon'ed,cal e moes tth eo ｾ , ;f't
O>-lQrtl ｶＭ･ｴｾ P-ft. 19<).l J
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