End-of-life issues: Case 1
Bernadette Tobin and Ian 0 Cameron

Mrs W. aged 85, lives in a nursing home. She has dense
hemiplegia from a prev ious strok e and severe d ementia.
She develops signs of pne umo nia . He r d aug hter has lold
you (her general practitioner) that her mother alwa ys feared
end ing up be ing a b urden 00 o thers . How ever, her son whom you do not kr'IcYw well - rings you and demands that
his mo ther be admitted to hos pital and be given all possib le treatment. How will you respond to this s itua tion?

LET u s DEVELOP this imaginary but frequently encountered
scen ario at the sam e time as we exa mine it s ethical challenges. Mrs W's son tells you he had promised his father he
would always look after his mother, and th at. although he has
not been able to visit her regularly, he now wants his mother
admitted to h ospital: he b elieves she will die if n ot treated .
Wh en you begin to q uestion th e value, to M n W herself, of
admitt ing her to hospital, he beco mes insistent . Alth ough
you are not convince d that th e son is truly acting in hi s
mo the r's best interests, you arrange hospital admi ssion . You
also recommend th e desirabili ty of a case co nference involving both of Mrs W's ad ult child ren, th e staff of th e nursing
hom e and yourself.

Collaborative decision-making: wh y it is required

It is importan t to be clear about why you need to consult MIs
W's family and her primary caregivers . It is not in order to
do "whatever th e family want s" . Families sometim es want
the doct or to do what amounts to overtreating (" Please do
everything possible to keep Mum alive") or underrre atin g
(" Can' t we hur r y th ings up a littl e?"). You need to cons ult
family and o the r prim ar y caregivers in orde r to ensu re th at,
in deciding what treatm ent is app rop riate for M rs W, you
ta ke into account (a) any infor mation th at is known about
what Mrs W would have wanted; (b) any signs as to what she
in fact wants now; (c) the capacity of her family and/or th e
nu rsing home to loo k after her; and (d) th e views of the
famil y and primary caregivers on the ap propriateness of
various fo rms of treatment and car e.
Alth ou gh you are no t ob liged to accede to a request th at
you th ink unreaso nab le (even if you are threatened with dire
consequences should yo u not do sol), it make s good sense
to allow the proce ss of deci sion-making to occ ur at a pace
that allows th e fami ly to app reciat e th e implications of th e
Plunkett cenb'e f or Ethic. In H.-Ith c.re, St Vincent's
Hospital, Sydn ey, NSW.
Bemadette Tobin, MA., PhD, Dilec lOf,
Rehabilitation Studie s Un it, Royal Reh abilita tion centre,
Ryde . NSW.
IBn 0 CIIrnet'011, FACRM. FA.FRM. PhD. DIrector.
Reprints: Dr B Tobin, Pll,ltlken Cen tre lOf Elhics. 5t VIl"lC8r'1t"s Hospital,

Darlinghursl, NSW 2010.
b.tobinOplunken.aeu.edu.au
424

• Con sulting the fam ily 01 an incompetent patient is
necessary in orde r to ens ure that yo u lake into acc ount
(a) any inlo rmation thai is known about what the pat ient
would hav e wanted; (b) any sig ns as to what the patient
wants now ; (c) the ca pac ity of the family and/or nurs ing
home to look after the pat ient; a nd (d ) the views of the
fam ily and primary caregiver s on the appropriateness
of va rious form s 01treatment and care .
• Fut ile or ov erly burden some tr eatment should not be
adm inistered.
• Soci al prejud ices aga inst elde rly anrvor dementect
people ma y unjust ly deny them appropri ate med ical
and nursing ca re .
The ethica l ch all enges facin g fam ilies/caregivers 01
incompetent pat ient s should be fram ed in ways that
genuinely he lp them to co me 10 reasonable solut ions.

situa tion. to co me to terms with thei r feelings, and to teach
as mu ch agr eem ent among th em selves as th ey can.
Let us now assume that th e ad mitti ng officer at th e local
hospi tal is reluctant to ad mit M rs W, that he thinks that
eme rgen cy treatme nt (which will include intrav enous
antibiotics and hyd ration) will be inappropriate for someone
in her condition. Although you have some sympathy with this
view. you are aware of the son's wishes and you fear th at (he
ad m itting officer 's otherwise reason able view migh t itself be
motivated in part by an unconscious bias against elderly,
demented people. Wh en he begins to tal k in fiscal terms
about the hospital's budget, you respo nd that ad mission to
the hosp ital will at least be the best way of ensuring th at Mrs
W be seen by a geriatrician, who can help to guide the family
through the next phase of treatment and decis ion- making.
So, let us assume that M rs W is admitted for assessment in
th e hospi tal's eme rgency depa rt ment .
Avoiding the influence of social pr ejudices

At th is point it is opportune to recall how considerations of
a pati ent's advan ced age and severe de me ntia should figure
in a doctor 's clinical decision-making. That is. how can doctors and o ther hea lthcare pra ctit ion ers avoid being influenced by social prejudices agains t th e elderly and the
incompet ent? Three sets of issue s ari se: the first to do wi th
what constitutes a proper limit to the administration of a lifesustaining tr eatment ; the seco nd to do with th e appropriate
allocat ion of resources to elde rly andl or demented people;
and the third to do with decision-making on behalf of incompetent people .
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Vol17S

1S Octobe r 2001

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Proper limi t. re life-sustaining treatment

The pro pe r limits to medical ca re can be stated relati vely
succinctly (although the judge ment th at th ese limits have in
fact bee n reach ed will always depend on the particularitie s
of th e individual case) . T reatments may legitimately be withhd d or withdrawn if they are therapeutically futil e. overly
I::urden som e to the patient, or not rea sonably available withcut disproportionate hardship to the patient or patient's
carers.' For instance, although nutrition and hydration
should always be provi de d to people who need the m, they
e-e not requ ired when they can not be assimilated by a
person's body or wh en the mode of delivery imposes grave
burdens on th e patient or care rs .
Appr opr iate car e for dependent elderly people

A good do ctor will hav e a deep respe ct for the lives of elderly
people, and inde ed a special co nce rn for th ose who suffer
from the disadvantage of de mentia." Recognising that old age
iii itself is not a "di sease" to be treated, he or she will manage
to avoid both th e Scylla of ovenreatment (preserving life at
Q' /Y cost) and th e Charybdis of un dertreatmen t (abandoning
the elderly JUSt because they are elde rly. and th e demented
j\.! ~t because th ey are demented) . A good docto r will help
patients and th eir families to ta ilor th eir expectations to a
reasonable level of health and longevity. and ind eed will help
them com e to terms with ou r com mon m ortality.
Deci$ion·rn~king on beh~" of incompetent people

Except in th e case of an emergency, treatment sho uld not be
administered to an incompetent patient such as .Mrs W until
ali the relevant information has been d isclosed and considered by her legitimate guardian o r representativ e an d th e
consent of th at person has been given. Repre5enring Mrs W
is the key ethica l notio n: if her son and daughter are not able
to agree be tween them selves as to wha t forms of tr eatment
and care are in the ir mother's best inte rests, th en you may
have to form an opinion as to whic h of th em more truly represents what th eir moth er would have want ed if she were able
to speak for herself.

Framing decisions about Iife.sustainlng treatment
With these th ings in mind, let us return to unravelling th e
case of Mrs W. You speak aga in with the di rector of th e
tmergency department. who explains that th e hospital sometimet has to contend with the reluctance of some me dica l
(and surgical) teams to accept the care of elderly, demented
patient s. In tr avenous antibiotics and rehydration have
been co mmenced for Mrs W. who ha s bronch opneumon ia
and is fluid-depleted, thin and undernourished. The geriatrician o n call bas accepted M rs W under her care and
wishes to d iscu ss her prognosis with th ose who are involved
in her cont in uing care. You arra nge for th is to take place .
How should th e ethical cha llen ge facing Mrs W's family
and caregivers be explained? The qu estions co uld usefully be
put in the following way: Would treating a future occu rrence
MJA Vol 175

15 Octobe r 200 1

of pneumonia be likely to restore Mrs W to a conditio n
which, all things cons ide red . would be reasonablysarnfactqry
for her, or wou ld it me rely prolo ng her gravely debilitated
condition? Would the insertion of a nasogastric rube be likely
to restore her to a condition she would find satisfacto ry, o r
would it merely impose unreasonable burdens on her ? Would
resuscitati on hold any benefits for Mrs W he rself, and. if so,
would th ey be proportionate or disproportiona te to th e burdens it would impose on he r? What ben efit to Mrs W might
a future hospital admission ha ve?
Raising these q uestions abo ut a future situation should
encourage the fami ly to confront M rs W's current situation
realistically and to see th at resu sci tation and/or fu ture hospital admission might be ina ppropriate. O f co urse, there
should be no question th at, wh atever else is decided, M rs W
sho uld continue to be offered food and water by mouth and
have her hygien e and comfort attended to.
Let us now imagine that, over the ne xt few days , Mrs W
is confused, inter mittently agitated an d d istressed; th at she
is unable to tolerate oxygen by mask or nasal prongs; th at she
pulls the intr avenous cann ula o ut on several occasion s; and
that sedation is disc ussed but not com me nced. Gradually,
Mrs W's pneumo nia is likely to imp rove and she will be
d ischarged back to the nu rsing ho me and into yo ur ca re .
It is not unreason able to hope that, at this point, the way
you have handled Mrs W's care, in pa rticular the way you
have put w issues to be decided to herfamily and caregivers, has
helped them to co me to som e agr eem ent in their hope s and
exp ectations for their mother. If so. you sho uld document
the se deci sions clearl y and unequivocally in the clini cal
note s. and ask the d irector of nu rsing at th e nursing hom e
to undertake th e responsibility for informing th e other nursing home staff of th e situ atio n. You sho uld also encourage
Mrs Ws family to keep in touch with both you and the d irector of nursing about th eir m oth er 's care.
Acknowledgements
Thanks 10Dr Nick Brennan. Professor HonryBrodaty and the ree rees lor helpful comments con an urliflr draft

References
1. HalsOury'J Laws of Auslralia, Sydroey: Bul1_ortr'1s. 1991_: 28Q..3030. 380-3510.
2, GormaltyL. edItor. The dependent elderly: autonomy. justlca and q...ality 01 care.
Cemtlridge: Cambf id ge University Pflt$$. 1992.
0

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