What Doctors Say About Care of the Dying

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What Doctors Say About

Jacinta OA Tan & Jacqueline JL Chin

With contributions from

Terry SH Kaan & Tracey E Chan

A study commissioned by

Care of the Dying


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Jacinta OA Tan & Jacqueline JL Chin

With contributions from

Terry SH Kaan & Tracey E Chan

What Doctors Say About

Care of the Dying


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Copyright 2011 Jacinta OA Tan, Jacqueline JL Chin,Terry SH Kaan and Tracey E Chan

Published by The Lien Foundation1 Raes Place#51-00 One Raes PlaceSingapore 048616

Cover Image: Citizen o the Empire Clerk, 91.5x76cms/ 36x30 inches, oils on canvas, 2003Image in Chapter 1: Trace, l installation with 18 drawings, table, light bulb, 2007Image in Chapter 2: Ephemera, variable dimensions, paper and lightbox, 2010Image in Chapter 3: Down the Kampong Lane, 76x56 cms/ 30x22 inches, oils on canvas, 1991Image in Chapter 4: Anthropological Study o a Nation, 40.6x40.6cms, sot pastels, collage,

drawings, 2005Above images used with permission by Susie Wong. Susie Wong

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National Library Board, Singapore Cataloguing-in-Publication Data

Tan, Jacinta, 1965-What doctors say about care o the dying / Jacinta O.A. Tan & Jacqueline J.L. Chin with

contributions rom Terry S.H. Kaan & Tracey E. Chan. Singapore : The Lien Foundation, c2011.p. cm.ISBN : 978-981-08-9830-4 (pbk.)1. Physicians Singapore Attitudes. 2. Terminal care Singapore Public opinion. 3. Medical

ethics Singapore Public opinion. 4. Public opinion Singapore. I. Chin, Jacqueline J. L., 1967-II. Title.

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Acknowledgements

Foreword

Eecutive Summary

Introduction

Chapter 1 The End o Lie: Diverse Concepts,

New Signicance

Chapter 2 The Role o the Family

Chapter 3 Healthcare or the Dying in Singapore

Chapter 4 Law and the End o Lie

Conclusion

Endnotes

Resources

Appendi Research Team and Methods

Contentsh

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he authors wish to thank Associate Proessor Terry Kaan and

Assistant Proessor Tracey Evans Chan or their contributions

to the development o the whole project and specically or co-

writing the chapter on law. Our distinguished steering group has

also given generously o their time and epertise, and we would

like to thank: Dr Noreen Chan, Associate Proessor Dr Chin Jing

Jih, Associate Proessor Dr Cynthia Goh, Associate Proessor Dr

Goh Lee Gan, Proessor Desley Hegney, Dr Tan Yew Seng, Dr T

Thirumoorthy, Dr Major Tor Phern Chern and Dr Wu Huei Yaw.

We would also like to thank Mr Lee Poh Wah and Mr Gabriel

Lim o the Lien Foundation or their unstinting and enthusiastic

support o this research, and Ms Genevieve Kuek or her helpul

advice. Dr Diie Tan and Dr Grace Tan provided tireless and

invaluable assistance with proong and editing, Ms Iris Wee, Ms

Rosnizah binte Mohammed Ali, and Mr Alden Chng gave us kind

administrative support, and Ms Luo Zhiei put in many hours o

hard work on project administration, coding and analysis, or

which we are deeply grateul. We thank Mr Calvin Ho and Ms

Syahirah binte Abdul Karim or their help with the workshop we

conducted at the National University o Singapore on 9th July,

2011, and the 21 healthcare proessionals including 2 observers

in attendance who participated in the validation o this research.

Finally, and most importantly, we owe an enormous debt to the 78

doctors who generously gave o their time, eperience and selves

in this research enterprise.

Acknowledgementsh


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n 2010, Lien Foundation, the Singapore philanthropic house

behind the Lie Beore Dealth initiative, commissioned

researchers based in the Centre or Biomedical Ethics at the

National University o Singapore to carry out a study o the viewsand attitudes o doctors in Singapore towards the care o patients

at the end o lie. This is the rst empirical ethics research project

that has been undertaken by the Centre or Biomedical Ethics in

the National University o Singapore, and it has been an eciting

journey or all involved. This report is a brie account o the

research results, and urther, more detailed academic publications

will ollow. This lay report is intended to educate, inorm and

stimulate debate amongst doctors, the public, policymakers

and lawmakers about the issues surrounding the medical care

o patients at the end o lie. We hope that this is the start o a

new way o engaging healthcare proessionals, patients and their

amilies with medical ethics. It would be hard to imagine a more

relevant topic or public understanding and debate than this one,

which will aect us all in one way or another throughout our lives.

The two principal researchers, Dr Jacqueline Chin and Dr Jacinta

Tan, are to be commended or carrying out such a well-designed,

thorough and highly topical study.

Proessor Alastair Vincent Campbell

Chen Su Lan Professor of Medical Ethics

Director, The Centre for Biomedical Ethics

National University of Singapore

Forewordh


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vi

Executive Summary

Chapter 1The Concept o the End o Lie

and its Signicance

Doctors in Singapore have wide rangingviews about what constitutes the end-o-

lie as a phase. The difculty o settling on

one meaning, whether biological, existen-

tial or operational indicates the diversity o

needs and goals that must be addressed in

end o lie care provision.

Doctors see themselves as having the re-

sponsibility or deciding when medical

science is no longer going to help patients

recover, responsibility or signalling whenthe goal o care should shit rom recov-

ery and cure to comort and quality o lie,

and responsibility or guiding patients to

accept the shit o goals and to prepare or

the end o lie.

The religious belies o patients and their

amilies as well as Singapore societal

attitudes, aect how well preparing patients

or death is achieved. Some religious and

ethnic communities are better able to ace

death, while others fnd it a taboo subject

Lets say, The richness o maturity

o the society can be measured by how

much it puts into the care o those who

are in need, the disabled, the dying.

And as we grow as a society, i you nd

we have less and less time and interest

in those who are disabled and dying,

we may not be really growing as a

society. We may be growing as a body

o entrepreneurs, or moneymakers or

survivors. (Doctor 01)

to be avoided. Better understanding o

how patients approach and make sense o

death and dying through their culture andreligion helps doctors meet the care needs

o patients at the end o lie.

Chapter 2The Role o the Family

The principle o patient autonomy, well

accepted in Western developed countries1,

is generally difcult to apply in Singaporean

amily culture. Decision making tends to bemade collectively by amilies, and doctors

said that this can interere with their duty

to provide patients with inormation

about their diagnosis and involve them

in healthcare decisions. One o the most

difcult ethical issues doctors ace is

collusion with amilies in withholding

the truth o diagnosis rom patients. They

oten need to work hard on persuading

amily members to be allowed to talk topatients truthully.

Some patterns o amily decision making

were o concern. Elderly patients and legal

minors were oten passive in decision-mak-

ing or protective o their amilies, with the

result that doctors oten elt it was difcult

to discern their true wishes.

It is sometimes difcult or doctors to make

best interests decisions where individualssee themselves and their interests as

intertwined with others in the amily.

In some cases, patients make altruistic

sacrifces or the sake o the amily; in

others, amilies insist that the patients

interests do not take precedence over other

more pressing amily needs.

Doctors said that the quality o flial

piety as a value afrmed in Singapore

society is strained by the heavy personal

burden o healthcare fnance upon the

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vii

ExECUTIVE SUMMARY

sandwich generation o persons who have

responsibility or their elderly parents and

their children.

Chapter 3Care o the Dying withinthe Singapore Healthcare

System

The Singapore healthcare system is complex

and works well or certain models o illness,

but the general set up and fnancial system

may not ft the needs o many patients atthe end o lie who oten have long-term and

chronic healthcare needs. They require more

treatment and support outside the acute

hospital system. There tends to be a lack

o coordination or individuals and their

amilies as they move rom one type o care

to another, or one institution to another.

Doctors talked about how the current

healthcare system does not support patient

wishes to die at home, because o the lack

o fnancial, social and physical support or

this, including a lack o consideration o

the burden to inormal caregivers, as well

as logistical problems in certiying death at

home.

The doctors identifed a need to debate the

healthcare system openly in order to develop

new ideas and policies about better access

to good healthcare, and wholistic, seamlessand appropriate care or patients and

amilies whose needs will vary and uctuate

at the end o lie.

Chapter 4The Law and the End o Lie

The law is generally seen by doctors as

setting the boundaries or, rather than

dictating, their clinical practice. They do

not seem to notice discrepancies between

their clinical practice and Singapore law

that governs adult patient consent and

confdentiality.

Doctors see very distinct moral dierences

between withholding and withdrawing

treatment, and hastening deathwhile

both withholding and withdrawing

treatment are morally acceptable to most,

hastening death is morally unacceptable to

almost all. Withholding and withdrawing

treatment are seen as morally acceptable

in cases o utility or competent patient

reusal, but withholding and withdrawing

nutrition and hydration are much more

ambivalently viewed, because eeding

carries an emotional signifcance to both

doctors and amilies.

Euthanasia and physician-assisted suicide

are largely disapproved o, and most

doctors do not want their proession to

have any part in such acts, though many

specifc cases o severe suering do troubledoctors.

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10

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viii

The Project

In recent years, there has been an increasingrecognition o, and interest in, the end-o-lie

phase o lie. The medical specialty o Palliative

Care has developed along with the provision o

hospices and hospice home care or patients near

the end o lie in Singapore. At the same time,

there has been some public debate about several

related issuesthe improvement o healthcare

leading to more chronic courses o illnesses that

would previously have caused people to die

quickly; the aging population and the increasing

burden o caring or elderly people who wouldhave chronic illnesses; and the demands o some

patients or changes in the law to allow provision

o euthanasia and physician-assisted suicide. All

these raise practical and ethical questions which

need to be answered i healthcare provision in

Singapore is to remain relevant and appropriate

to the needs o the population.

Introduction

What We Did

Although there are many dierent healthcare proessionals involved in care o the

dying, doctors still have primary responsibility or most healthcare decisions at the

end o lie in Singapore. For this reason, we decided to ocus only on doctors or this

study. Some doctors are very experienced and highly skilled in managing problems

that patients and their amilies ace at the end o lie; other doctors rarely see dying

patients and may be poorly equipped to help such patients when they do meet them.

In order to examine the range o doctors that patients may meet at the end o lie,

we decided to interview as many types o doctors as we could. The questions used in

the research were developed with the assistance o a distinguished steering group o

experts.

We used a qualitative interview method, which means that the interviewers talked

to the doctors in a confdential research interview using a exible method o dialogue

which covers all the areas named in a Topic Guide but also ollows the doctors own

accounts and experiences. Please see the Appendix or a more detailed account o the

research method. Seventy-eight doctors were recruited rom a wide range o disciplines.

They also came rom a wide range o work settings: private amily medicine, polyclinics,

private medical home care, community hospitals, hospices, private specialist practice,

restructured hospital specialist practice and academic medicine.1

It has become evident that there is very littleevidence to guide the development o policy and

practice o care o patients at the end o lie.

Most o the research at the end o lie comes

rom First World, ully-industrialised countries

in Europe, the United States and Canada, and

Australasia. Given that end-o-lie issues involve

many value-based and culture-based actors, it

is likely that these research results do not apply

well to the Singapore context; and it is not clear

what the dierences may be between Singapore,

which has a very modern, advanced healthcare

system in an Asian context, and these countries.

This project aims to provide preliminary

research evidence o end-o-lie issues in the

Singapore context, which can be built upon in

uture research and project initiatives.


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1.1 The denition o end-o-lie

It is now quite common amongst doctors

to talk about end-o-lie. There is even

a medical specialty, palliative care, that

(amongst other things) ocuses on medical

and other needs o patients at the end o

lie. But what do doctors think end-o-

lie is? We asked doctors what the term

end-o-lie means to them, and we ound

that in spite o being a commonly accepted

term, trying to pin down what constitutesend-o-lie is not straightorward. The

term end-o-lie, it turned out, means a lot

o dierent things to dierent people, and

even dierent things to the same person.

z Biological and unctionaldenitions o end-o-lie

There were some who thought that end-

o-lie simply meant death, nothing more

or less; or that end-o-lie was perhaps a

persons last ew hours or days alive, when

that person was literally in the process o

dying. For example, most doctors use the

Lets say, The richness o maturity

o the society can be measured by how

much it puts into the care o those who

are in need, the disabled, the dying.

And as we grow as a society, i you nd

we have less and less time and interest

in those who are disabled and dying,

we may not be really growing as a

society. We may be growing as a bodyo entrepreneurs, or moneymakers or

survivors. (Doctor 01)

1

The End of Life

cessation o heartbeat and breathing as

the markers o death in ordinary clinical

practice; but in the ormal legal sense,diagnosis o death was actually made

using specifc criteria or brain death, as is

done when organs are going to be used or

transplant.

[It is] the physical end o lie. So death

means, physically, theres no longer someone

able to unction as a living organism.

Whatever denes a physical organism. That,

to me, is end-o-lie, and that is equivalent

to death. (Doctor 02)

z Broader denitions o end-o-lieMost, however, saw end-o-lie as a

bigger, longer and more complex stage in

lie. In medicine, doctors explained, there

were broad defnitions about end-o-lie

being a distinct stage in medical care.

[T]o me, end-o-lie is really the time

rom when it becomes certain, whateverdisease process he may have, its no longer

reversible. And then rom this point onwards,

it is a march, a progression towards death.

And to me, thats end-o-lie, and end-o-lie

care. (Doctor 01)

From a clinical point o view, I would

say that when, seemingly, the treatment

goals have shited rom cure ... you know,

to that o maintaining comort, and that

the prognosis in terms o actually reversingthe disease process has ceased, and were

looking now at comort and end-o-lie type

o treatments. Its dened more like the

goals o treatment. (Doctor 13)

For me, I reer to the illness, or

eample, i the illness itsel is going to be

progressive, and is going to get worse with

time. So that is how I dene my lie-limiting

illness as ... not so much by the age, as by

the illness. For eample, dementia itsel can

be a lie limiting illness, because it is going

to progress. (Doctor 63)

Diverse Concepts, New Significance

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3

END OF LIFE: NEW SIGNIFICANCE

zPolicy and operational denitionsThere were also much narrower operational

criteria which were used or practicalpurposes, but which ail to accommodate

these broader defnitions. An example

o narrow criteria is the clear-cut, time-

based defnitions o end-o-lie which are

currently used to determine when patients

become eligible to have their hospice care

paid or by the government. However,

doctors pointed out that medical science is

still poor at determining exactly how long

an individual person has let to live, so this

can be a problem. For example, there have

been difcult cases where patients who

were given less than six months to live go

to a hospice but then had to leave because

they had outlived their allocated unding

or hospice care.

The way [the] Singapore Government

unds, end-o-lie will translate into the last

three months. At the most, si months,

because the Singapore government undsevery Singaporean citizen up to si months

to give them time to come to terms with it,

granting palliative care provision or up to

si months o each individuals lie. So i

youve used it up beore you die, too bad,

you dont get it again. ...Its denitely very

dicult, we are very bad at [prognosticat-

ing], we over-estimate all the time. From

a hospice point o view, its three to si

months. From a home care hospice point o

view, its one year because the unding orthem is one year. Thats the practical way o

dening [the end-o-lie phase] or service

delivery. (Doctor 03)

Other doctors challenged the priorities o

end-o-lie debates, and the need or a hard

defnition o the end o lie, preerring the

language o goals o care, and the needs

o the dying.

So maybe we shouldnt worry too much

about the word. So I dont think the term

end-o-lie should be given priority. We

shouldnt be too obsessed with the term

end-o-lie. Maybe we should be more

obsessed with needs or a better term orit, or goals o care. Yes, we should be more

obsessed with goals o care and needs than

on end-o-lie. Because that boes people

in. (Doctor 01)

Several doctors thought that the end o

lie was when patients were not expected

to live more than a certain period o time,

usually counted in months up to one or

two years. Most doctors elt that the end-

o-lie stage is much more ill-defned and

poorly captured by time-based criteria,

because to them it is when patients

suer rom what they called lie-limiting

illness. A lie-limiting illness is one which

is incurable and likely to end the lie o

a patient prematurely, but nevertheless

death may not occur or many more years.

A good example o a lie-limiting illness

would be neuromuscular dystrophy, where

the patient progressively loses the use ohis or her muscles and eventually is unable

to breathe.

zThe surprise questionHow then, do we even know when a per-

son is in the end-o-lie stage? Some doc-

tors suggested that the litmus test could

be a hypothetical question o whether the

doctor would be surprised i a particular

patient died soon. I asked that question

and a doctor said, no, they would not besurprised, then the patient probably is

at the end o lieirrespective o how it

might be defned.

End-o-lie would be when the end is

near but not so, so near. So maybe within a

year i the child were to pass away, I would

not be surprised. (Doctor 41)

And I think at least rom my point

o view, its important to consider these

people, maybe not obviously at the end o

lie, but who could be nearing the end o lie


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WHAT DOCTORS SAY

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because when things do happen, they, their

physicians, and their amilies all turn around

and say, Oh, but it was so sudden! But thenactually when you look back, it wasnt really

that surprising. The end may have come

very quickly but it wasnt that surprising, in

the bigger scheme o things. (Doctor 05)

zSpiritual and other non-medicalunderstandings o end o lie

Finally, many doctors said that end o lie

was not just a medical issue, but a spiri-

tual, emotional and psychological stage.

[I]nternally, or onesel, at certain stag-

es o meditation, youre supposed to medi-

tate on how rebirth occurs. Why [the] law o

karma works, and how is there causes and

conditions, and how it impacts on the new

rebirth. And subsequently, eperience o

this liehow is it [the law o karma] linked

with eperiences o that lie and the past,

previous lie. So you have to analyse those

[matters] deeply. Thats when you have toanalyse in yoursel: how did the death hap-

pen in you, in the past lie? And how did

the rebirth occur in your lie? So, spiritually,

that is how I understand death to be; but

clinically I cant do that because, unless one

has psychic power, we cant tell. So we go

by physical, objective signs. (Doctor 09)

The Muslims view death as the end o

the lie in this world. Because Muslims be-

lieve in the hereater. The world is a tran-sient place where you sow, you work, where

you try to do as many good deeds. And its

a transient thing. As you pass on you will go

on to another lie, basically. So death is just

a point to deliberate between the lie in this

world and the lie in that world. So thats

how Muslims view death. (Doctor 76)

When people roughly know when

theyre going to die. They plan what they

want to do with the rest o it [their lie].(Doctor 07)

1.2 How end-o-lie aectsdecisions

zBalancing curative treatmentand comort care

For some doctors, the end-o-lie stage

marked a distinct phase where the goal otreatment shits rom cure to comort

care. Comort care, as they described it,

consists o treatment and care with the

aim o maximising quality o the patients

remaining lie, rather than strenuously

trying to maximise the quantity o

remaining lie. The important dierence is

Decline

DeathHealthStatus

HealthStatus

HealthStatus

Time Time Time

Death Death

Decline

Crises

Trajectories o Dying

Trajectory 1: Sudden death withinthe context o chronic illness

Acute Myocardial Infarction orFatal Arrhythmia in the context ochronic heart disease

Massive Stroke or MyocardialInarction in the context ochronic cerebral vascular disease

Trajectory 3: Steady decline withintermittent crises and unpredictabledeath point

Advanced stage heart disease

Advanced stage lung disease

Advanced liver failure

Trajectory 2: Steady decline withexpected death no matter what treat-ments oered

Poor prognosis cancers

Neurodegenerative diseases

Source: Glaser and Strauss (www.fammed.washington.edu)


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5


that treatment with the goal o cure, which

tries to help the patient survive longer,

usually means a great deal o discomort inthe short term. In other words, aiming or

cure oten involved a lot o short term pain

and discomort with the aim o gaining a

lot in the long term in terms o added years

o lie; but aiming or comort involves

trying to maximise current conditions and

quality o lie because there is no prospect

o gain in the long term because o the

inevitability o death.

For eample, insulin. Insulin treatments

to a patient may not seem un. Its an

injection. But physicians all over the world

argue, and I guess thats how Ive been

trained as well, that its just a shot, it isnt

that painul and you get used to it. But

you know, i you are able to control your

diabetes well, you are going to prevent

this, prevent that, and you are going to live

much longerand so we push the patients

into doing those things.Interviewer: Whereas when its terminal

you may think ...

Thats right. Then the reverse would

have taken predominance, and then the

quality o lie will be the predominant

consideration, rather than actually being

based on longevity. (Doctor 02)

zMortal risksAn unusual idea was that patients could

be in an end-o-lie stage while the goalso treatment were still to cure the patient.

The doctor who suggested this explained

that some o her patients had such serious

illnesses that they had to be guided to ace

up to the strong possibility o imminent

death, in particular, death due to the con-

sequences o treatment itsel; but that, at

the same time, the treatment was not utile

but trying to cure the patient.

[Y]ou know that there is this upront

20% mortality in any [names major

medical procedure]. And i youre going

or a procedure that has got [an] upront

mortality rate o 20%, you had better

prepare in case you dont make it through.So thats how we perceive it. So, Id say that

the challenge is how to prepare or end-o-

lie issues, while giving hope or a cure and

ghting to survive. Does that make sense to

you? (Doctor 14)

1.3 The role o the doctor inthe end-o-lie stage

zThe doctor as leader in the careteam

Many doctors also elt that deciding that

the end-o-lie stage had been reached

is one o the jobs a doctor has. This is

because he is in a position to judge, based

on his medical expertise, when urther

medical treatment aiming or cure or

recovery is utile. In other words, in a

world o increasingly sophisticated medical

technology and increasing expectationson the part o patients and their amilies

o what that medical technology can do

or them, the doctor is the one who may

have the painul task o telling patients

that medical science cannot do any more

to heal them. At this point, the doctor has

the urther task to guide the patient and his

or her amily to accept the inevitability o

an imminent death, and to prepare or this.

[T]he stage beore that, when yourenot sure, or youre battling, or instance,

and you know that you may be going this

or you may be going that way, you are not

quite sure. To me, that is not yet end-o-

lie because, at that point o time. During

end-o-lie care, the physicians goals

have changed. Beore end-o-lie care, the

physician is still preserving [lie], to prevent

death. But at the point when the physician

now determines to his best proessional

wisdom, my goal now is no longerIm

no longer able to achieve my previous

goals, I now have to go toward this goal:


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WHAT DOCTORS SAY

6

to have this person, and everybody that is

involved, to prepare or the demise o the

specic person. Thats when its end-o-lie care. And the physician has to clearly

signal this change o goals: documentary-

wise, team-wise, everybody, to decide. O

course its not easy or the physician to take

the decision. And physicians need to learn

how to come to that decision. What is the

process, how you do it. Thats the diculty

in real lie: its compleity, its uncertainty,

how you deal with and judge certain things.

(Doctor 01)

z Doctor in the gapSeveral doctors talked about taking on

roles that are not strictly medical when

dealing with people who are at the end-

o-lie. Some o this was due to the lack

o other resources or specifcally trained

proessionals who could help such patients

with psychological, spiritual and social

needs. Doctors, however, oten elt that it

was their role to not only deal with theirpatients medical needs, but also to treat

their patients more holistically by address-

ing the complexity o all their other needs.

[T]hey were told by the hospital that

shes ninety plus, this is a sacral sore, shes

septic. Just take her home. Let her die, you

know? And then the GP was looking ater

her or ages. He was my riend who called

me up and said, Do you think you want to

see her? Because you do wounds, right?I do. So I went to her house. The amily

was very nice. They were so supportive.

They got a hospital bed that could be, you

know, cranked up and down. They have a

maid to look ater her and they were doing

these dressings all wrong. So I was, like

okay, theyre very hardworking about it but

theyre not doing it right. And they were

always eeding her white porridge, so she

had basically not much nutrition. So I went

to the kitchen, I inspected it. I taught the

maid how to cook. Like, you know, what

kind o soup, how you puree stu so that

she has something to let the fesh grow.

And then you use [a type o dressing] to

start dressing. Taught her how to clean, beneat, and then I made another visit, to make

sure that she got it right. And the fesh

just grows all the way back and she only

died one year later instead o a couple o

weeks. (Doctor 07)

z Facilitator o the dying patientsaims

Some doctors said that they could not just

abandon their patients ater drawing a line

or medical interventions, and there was a

strong theme o the role o doctors being

to care or their patients, to listen to them,

and not just to cure them. This is not to say

that there are no medical needs at the end-

o-lie. Doctors talked in particular about

the need or relie o pain and o other

symptoms o the illness at the end-o-lie,

and elt that medicine still has a big role to

play in helping people to be comortable,

ulfl wishes and to be able to have a gooddeath.

we already counselled her [patient]

and told her its [the procedure she asked

or] not curative. I mean, its way against

principles but it wasnt impossible because

it is something that you can do. But youve

got to get the patient to understand that

were only doing this or you because you

asked or it. But given a choice we would

remove the whole thing. But anyway shesaid she just wanted to be happy. So we just

did it or her. (Doctor 07)

I think most people associate end o

lie with palliative care, and most people

associate palliative care with oncology. And I

think thats a very skewed or very restricted,

restrictive view o what palliative care is. You

can have non-oncological palliative care,

end-stage renal ailure. You can have liver

disease, end-stage hepatic disease. All these

are palliative. So I think its a transition, its

that journey I think, in the last ew weeks


17/68

7


beore you breathe your last breath. Thats

end-o-lie. So i you ask me, end-o-lie care

... it applies to everyone who comes to us,or transits home, to die. That to me is end-

o-lie care. So its not so much, sometimes

... by the time you reach the end, its not so

much medical. Its psychological, spiritual.

Its handling amily dynamics. It is ensuring

that the patient can[2 second pause] has

the autonomy to decide what he wants, to

say how he wants to go. A lot o times they

want an etension not because they are

araid to die, but they want an etension to

nish all unnished business. I just want to

live long enough to wait or somebody to

say goodbye to me. And then thats it. Its

good enough. (Doctor 19)

1.4 Religious infuences atthe end o lie

Religion greatly aects how patients

respond to the end o lie. The doctorsspoke o how having a religion changes the

meaning o the end o lie or their patients.

They also described how religion aects

the way that patients deal with acing the

issues o end-o-lie.

zTraditional Chinese beliesabout death

A large number o patients and their

amilies in Singapore call themselves

Buddhist or Taoist but are not strictly orsolely ollowing the teachings o Buddha

or Lao Tzu. Instead, they hold traditional

Chinese belies in an assortment o gods

and spirits and ollow many traditions

concerning death and dying. The doctors

described these Chinese as having a strong

taboo o speaking o death or associating

with death, or example having a person

die in the home or being physically near

someone who is dying, or being breathed

upon during a persons last breath. They

explained that this makes the notion o

bringing a patient home to die amongst his

or her loved ones in amiliar surroundings,

something considered sel-evidently good

in many cultures and developed countries,a problem or these Chinese. Superstition

around the subject o death was also a

problem, or example, to mention death

is to invite it or would be bad luck. This

makes bringing up and discussing the

subject o death and dying very difcult

with these patients and their amilies. This

means that important issues and decisions

tend to be overlooked, such as the making

o wills and preparing or the possibility or

eventuality o death, or example makingAdvance Medical Directives or appointing

donees in anticipation o mental incapacity.

[W]hen the people die, the way that

the Taoist [Speaker means here a syncretic

version o Chinese religions practised in

Singapore] reacts is, Oh no, they have died

and you must then do all sorts o things

to paciy the [Mandarin, literal

translation: Bull Head, Horse Face; twoguardians o the Underworld in Chinese

mythology] and then they will burn... all

these things, and then have all these rituals

that they must ollow, and all these taboos,

thousand and one o them. Like, you know,

i you get married, you cannot have a death

near [the date]. ...I you have a new baby,

[and] you have visited a grave, you cannot

go near it [the baby]. I you have just given

birth, you should not attend somebodys

wedding, and obviously, they are not goingto attend anything that has to do with

death. (Doctor 68)

Because our old people had been

through the Japanese War. They had seen

cons sticking out o the ground. But

ater that we became very hush-hush. Its

something that we understand in our psyche

but something we dont say. And its because

its inauspicious to say. So when I talk about

death and dying to a Chinese in Chinese, we

would reer to the traditional term which is

[Mandarin, literal translation: ater


18/68

WHAT DOCTORS SAY

8

a hundred years, an euphemism or ater

youve passed away]. I wouldnt say, Uncle,

[Mandarin, translation: ateryouve died]. I would say, Uncle,

? [Mandarin, translation: what

are your instructions when youve reached a

hundred years?] Its the traditional contet.

And we know our cultural background ...

Interviewer: Ah, this is new. This is

important. You can talk about death. But

you may use a dierent way o alluding to it

that is acceptable to the other party.

Right. When the Emperor is dying, and

he asks whos going to succeed him, you

back in [to the topic by introducing it indi-

rectly], [Mandarin, translation:

ater a hundred years].

Interviewer 2: Can you translate that?

. [Mandarin, translation: a hun-

dred years] I you go back [in time], you can

nd [this] in [ancient Chinese] reerences.

Interviewer: Ah. So its quite acceptable

to die at a hundred.

So your lie is completed what areyour plans. In act I dont say die very oten.

Interviewer: This is really new and I think

its actually very, very important. So you

might say in Chinese, . Then

what else do you say?

[You might] say: I youre very sick, when

you are not around anymore, are you worried

about your children? These are the things

that in our local contet tell the patient

that he may not make it. (Doctor 71)

zMuslim and Christian

acceptance o death; andpeople with no settled belies[L]ets say a [Muslim] mother loses her

child... yes, they will grieve or a while but

they tend to be able to overcome it much

aster, yeah they will still eel sad and all

that, but you can see that they are handling

it much better, they seem as [i to think],

you know, [that the] person has moved

on, that God has taken the person back

similar to how the Christian will see it.

(Doctor 68)

I think, or eample, Muslims are very

accepting. Normally their amilies are

supportive. They camp in the hospital.The entire kampong [Malay, translation:

village]. And they will bring their mats, their

picnic stu, and theyll be, like, you know,

in the stairwells, you know, occupy all the

stairs and, you know, just sitting there to

accompany the patient in shits.

Interviewer: Wow.

You know, one or two, they go in, they

see the guy, they help him. So its a very good

testimony o amily togetherness. Chinese,

it depends. To me its like, I nd that or

Christians, I think Christians die peaceully.

They are not araid o dying. They know

whats at the other end. Normally those who

are very cool about it, they just say bye.

Interviewer: Oh do they?

Yeah they do. The ones who dont

believe in anything tend to be more earul

but I need to sit with the dying on their

deathbed. Just to sit with them and hold

their hand because sometimes you haveto hold their hands because nobody visits

them. You know, some o them have such

dysunctional amilies that people dont

visit. And theyre very lonely, no one to

talk to. And they just want to talk to you.

Because they have nobody. And sometimes

theyre like, so upset, and then they know

theyre dying and theres nothing they can

do. So with all the tubes and everything just

hold their hand. They know when theyre

going. Just hold until they let go o you.Interviewer: Well thats great that you get

to do that.

Well, yeah, but you know its not particu-

larly nice. You see that patient is going to die

and, its like, and you know theres nothing

much you can do because youve done ma

and you still have to see him go. But theyre

lonely you know. Theyre scared and, like,

thats all you can do. (Doctor 07)

zBuddhist outlook on deathBuddhists were also accepting o death

and the end-o-lie, but or other reasons.


19/68

9


Devout Buddhists were described as having

the ability to meditate to overcome pain,

and death was viewed as the gateway toanother existence, with the experience to

be aced calmly and without emotional

attachment to earthly things and relation-

ships.

Well Im Buddhist. And as a Buddhist,

I am a staunch meditator. ... [W]hen the

death consciousness occurs, immediately

ater that is rebirth-making consciousness.

At that point when the death consciousness

occurs, that is death. Death consciousness

occurs in one billionth o a second. Its very

ast. Death consciousness occurs, and in the

last moment, click, and then thats death.

Interviewer: And then ater that, you e-

perience something else?

That would be a new lie. (Doctor 09)

zDoctors handling their ownreligious belies

For doctors who were themselves religious,whether Christian, Muslim or Buddhist,

their belies were important to how they

deal with patients who are dying, and their

amilies. Doctors, being amiliar with death

in the course o their work, were much less

superstitious about death themselves, and

saw it as their vocation to help those who

were dying. The doctors who had strong

religious belies were very careul about

being sensitive to their patients belies and

vulnerabilities, and tended to share theirown convictions only with patients who

were ellow believers.

[The] government said: Look, the

hospital I mean, its a act, The hospital is

not the place or you to promote your aith,

to evangelize. Because o that, medical sta

are sometimes reluctant to raise spiritual

issues. I should be able to talk to the dying

patients or the relatives about spiritual

issues without having to evangelize. But o

course i Im a Christian and my patient is a

Buddhist, Im supposed to know something

about [the] Buddhist concept o death. And

i I dont know, society epects me to nd a

doctor who knows the Buddhist things, whocan then acilitate it. (Doctor 01)

The doctors own religious belies also a-

ected how they viewed moral issues such as

euthanasia, and this will be discussed later.

1.5 Societal attitudes tothe end o lie

Singaporean societal attitudes have a ma-

jor impact on how doctors treat patients at

the end-o-lie.

Several doctors described Singaporeans

as suspicious people, who might think that

a doctor was giving up on them i he or

she spoke o accepting the end-o-lie or

advised against continued treatment.

Furthermore, doctors described that

Singaporean amilies fnd it difcult to

suggest to their relatives that they shoulddo advance planning or death such as

writing wills and stating wishes concerning

terminal care, because ill relatives would

accuse them o wishing them dead or

wanting their property. Finally, there

were accounts that some people think

that the encouragement o patients to be

able to go home in order to die in amiliar

surroundings amongst those they love is

an attempt on the part o institutions and

the state to save money at their expense.This account rom doctors suggested that

society itsel is still distrustul o the motives

o amilies, healthcare proessionals and

the government, which aects issues

concerning death and dying.

z Why amilies tend to avoidend-o-lie conversationsI think people dont want to talk about

it, number one. Its becausewell my

theory anywayor the children especially,

when you talk about it there is also the issue

about nance, property, who gets it when


20/68

WHAT DOCTORS SAY

10

Summary

Doctors in Singapore do not seem to have a very clear and settled notion o what

constitutes the end o lie as a phase. Nonetheless, they see their role as caring or

their patients at the end o lie even when cure is not possible. Doctors see themselves

as having the responsibility or deciding when medical science is no longer going to

help patients recover, responsibility or signalling when the goal o care should shit

rom recovery and cure to comort and quality o lie, and responsibility or guiding

patients to accept the shit o goals and to prepare or the end o lie. The cultural and

religious belies o patients and their amilies as well as Singapore societal attitudes,

however, do aect how well these tasks are achieved.

youre gone. Its really bad. Because i you

remember in Singapore, [or] the average

Singaporean, most, even the lower income,will have property. Its that HDB fat, that

little nest egg. So when you talk about

end-o-lie, immediately the response is,

So youre talking about money. Which,

actually, a lot o times, the children, or

the other people who are staying with

them, dont intend to [talk about money].

They just want to know how youre going

to settle your aairs. So its very coloured

with that. So thats number one. Number

two is that, well, theres the Chinese athersaying, suay [Hokkien, translation: unlucky,

inauspicious], that kind o thing, dont invite

trouble, dont talk about it kind o thing. So

that one is also there. Number three is that

health literacy is actually very low in this

country compared to other countries.

(Doctor 06)

zA low-trust society

I think there are quite a ew things here.Singapore is a low trust society and people

are very suspicious. I dont know i youve

seen that video o the guy in the HOTA [Hu-

man Organ Transplant Act] case? The guy

in [names hospital] where the mother was

pleading with them not to harvest his or-

gans. Its actually on YouTube.

Interviewer: It is?

Yes, it is. In act this guy had intracerebral

haemorrhage. They invoked HOTA and were

trying to harvest his organs. And his amily

hadnt quite come to grips with it yet. And

the mother went on her knees, and wasdragging, sort o holding, the legs o the

surgeon as he was going into the operating

room. They handled it very badly. Channel

8 was there. They lmed it and its got on

YouTube. So HOTA is raught with [does not

nish thought]... and when you go on the

internet, its raught with lack o trust, and

suspicion over whats happening. Have

their organs been harvested or wealthy

people who can aord transplants? So

similarly here, at the end o lie, [the peoplesuspect] the government is trying to save

money by not treating their relatives who

have epensive end-o-lie needs, who need

epensive therapies. (Doctor 60)

zFamily involvement at the endo lie

Singapore amily members were described

as still very involved in each others care;

and that within the nuclear amilies at

least, there were strong relationships and

interdependence. Malays in particular

were described as having strong amily and

community bonds, with many relatives

and riends showing up to visit patients in

hospital and being very willing to provide

support or the ill person, including fnan-

cial help as required. The issue o amily

will be discussed in the next Chapter.


21/68


22/68

2

The Role of the Family

Some patients would say, Oh, the

surgeon told me I have a growth here

which is quite common, and he wants

to take it out. And Id ask them, Oh,

so will taking it out make it much better

or you, all over again? And some o

them would say, Yeah, yeah. Thats

what he said. And some o them say,

I dont know. He said I have a growthand I must take it out, so I take it out

loh! And then they sign consent, and

they are all respectul, all gullible,

respectul o the doctors decisions. And

then Id try to understand what the

patient values, what they work as, what

their occupation is, and so orth. Then I

would try to get the patient out o the

room, using some ecuses like, Oh, you

need to go sit in a room, get a blood

test done. Then Id bring the amily

in and say, Whats going on here? Tell

me about it, and let them tell their

story, and understand their perspective.

Because the amily needs to eel I am

on their side as well. But I have to keep

remembering that I am the advocate

o the patient. My duty o care is to

the patient rst, my duty o care to the

amily [is] second. I have [a] duty o care

to both, but the patient is rst. But ithe patient is so linked in to the amily,

I have to be very cautious how I do this.

So, it gets very dicult sometimes. So I

try to listen to the amilys point o view;

listen to, try to understand the patient,

and then try to see i we can marry the

two. Because ultimately the duty o care

is still to the patient and what is in the

interests o the patient. (Doctor 03)

2.1 The discrepancy betweenSingapore law and medical

practice

One o the strongest themes emerging

rom the research was the role o the

amily in decision-making at the end o

lie. Doctors all described the amilies o

most ill patients at the end o lie as being

extremely involved in the decision-making

process in many ways.

zAutonomy principle is hard toapply in Asian amily culture

Singapore law assumes an individual

autonomy model o making decisions or

patients who have not lost their abilities

to make decisions. This assumption is also

present in English law as well as the law in

most developed countries. The law holds

that the individual adult patient has the

right to be given inormation about their

medical condition frst in a confdential

setting, and that they can then makeinormed treatment decisions with their

doctor, including decisions about how

much they allow the doctor to tell their

amily members and how much they wish

to involve them in decisions about their

care. Most doctors elt that this model o

making decisions does not reect medical

practice in Singapore at all.

Its very dicult in Singapore. Especially

when you have your Western concept oautonomy and all that. Its really very, very

hard to apply. I think doctors try to apply it

but I must say we bend the rules; we try to

work round it, sometimes, to be creative.

Because the truth is: Asians do see

themselves as part o a unit. There was a

complaint against a particular oncologist

where a lady said, How could he tell our

mother without rst telling us? I told her

that the oncologist in question had worked

in America where they are required to tell

the patient beore anyone else and ask

permission to tell anyone else lest they be

12


23/68

13

THE ROLE OF THE FAMILY

sued. And she said she wasnt aware o that.

The practice in Singapore is the opposite o

that. Im not saying that in every situationyou should talk to the amily rst because

you may really have to make that judgement

call. And so we have to be very sensitive to

that. (Doctor 03)

z Working with amilies ondisclosure and decision-making

Doctors said that the situation or patients

in Singapore is the reverse o the legal

model in most cases, particularly in cases

involving elderly patients who have adult

children who are paying or their medical

care. In Singapore, the amily expects to

be told any bad news frst, and then the

amily members decide, with or without

the doctor, how much they want the

patient to be told. In some cases, the amily

members attempt to control and dictate

both disclosure o inormation and type o

treatment right rom the start, beore the

diagnosis is even known. Many doctorsdescribed that they do collude with this

system, and some doctors described being

placed in a difcult situation when patients

who have been reerred to them arrive

completely ignorant o their diagnosis

or seriousness o their illness, and even

ignorant o why major procedures such as

surgery have been perormed.

I think that when you practice in the

West, you take it or granted that everyoneis very autonomous, the right to sel-

determination is a very important ethic in

the West. Here, decisions are being made as

a amily. And I think that here, sometimes

we do have diculty telling patients their

diagnosis, much less making decisions.

You cant make decisions when the patient

doesnt know the diagnosis. That is a very

common problem that we ace, and usually

the amilies are protective and dont want

them to know how ill they are, because they

dont want to make them eel worse. So it

stops there. We need to make all these very

dicult decisions about urther medical

care, which siteis it in the hospital? In the

hospice? In the home? It is very hard. Weneed to use our amilies as surrogates, based

on their understanding o the values o the

patients, to make all these very unilateral

decisions. So, that is in itsel quite a chal-

lenge. (Doctor 62)

So everything rom, say, treatment

decisions to say, or eample, you know, i

clinician says that in my view the goals o

care have shited, its now going into

comort measures rather than curative, and

then amily will say something quite

dierent. And well say that, Well but, you

know, in terms o taking inormed consent,

we need to try and understand how your

Mommy or Daddy eels about it; and they

say, you know, Better dont tell her, shes

not going to be able to make a decision,

Shes not educated, Shes in such pain,

whatever. And then they will try and bargain

or some o that shit in the spectrum ohow much autonomy we want to give to

patient versus them, versus you know, us.

And there is some sort o communication or

bargaining. (Doctor 13)

So I just use very general terms, to see i

she understands or not about the condition.

Sometimes i they really dont want the

patient to know, beore the patient steps in,

they will bring a note and ask the clinic

assistant to bring [that] in rst. My ather[or mother] does not know the diagnosis.

Please do not disclose. (Doctor 63)

2.2 Family patterns o disclosureand decision-making in elderly

patients

zFamilies try to protect patientsthrough non-disclosure andcollusion

Family members who try to prevent

disclosure by doctors to patients, and who


24/68

WHAT DOCTORS SAY

14

try to make decisions or patients, appear

to be doing so out o good intentions. All

the doctors who described such actions saidthat relatives were well-intentioned in their

actions. The relatives were generally trying

to protect the patients rom the burden o

knowledge, the burden o responsibility

o making decisions, and in particular the

prospect o losing hope i given bad news.

My own personal approach is that I nd

out why; almost always I receive the same

answer: I dont want this person to lose

hope. Yeah, then you start to eplore a bit

more. (Doctor 63)

The reasons given to me sometimes

were that the patient wouldnt be able to

cope with the news or that he wouldnt be

able to accept that he has cancer or some

terminal illness. They suggested that the

patient might eel depressed, they may

want to commit suicide or do something

very stupid. I tell them that thats not usuallythe case. (Doctor 16)

zMany elderly patients relinquishdecision making to amilymembers

Interestingly, not only were adult children

trying to protect their elderly parents

rom the burdens o knowledge and

decision-making, but doctors described

many elderly parents as being willing, or

wishing, to deer to their adult children inmaking decisions, or understanding the

ull acts o their illnesses. The doctors

ound that where many adult children

were insisting that they should be making

decisions or their elderly parents or that

their elderly parents should not be told o

their diagnosis, these elderly parents were

themselves not tending to ask the doctors

or inormation or seemed happy to pass

decision-making over to them.

A lot o time in the West, we usually

approach the patient, we work with the

patient toward a certain goal, but here it is

dierent, a lot o times, either the patient

deers to the amily in terms o decisionmaking or, they may be too ill at a certain

point to make decisions when you rst meet

them. The amily becomes a very important

aspect o decision making. So a lot o times

we work with the amily rather than the

patient. Either they are too elderly or they

decide to leave the decision making to the

amily. Or they are too ill. Occasionally we

do have patient who can make decisions on

their own, and we do as ar as possible try

to talk to them. (Doctor 63)

I think i you look at the West, autonomy

is very important. Tell me rst, then I

decide whether to tell my amily. But over

here, being Oriental, being Asian, I think

the amily unit is very strong, and there is

always a deerment or transer o autonomy

many times, rom the elderly personthe

grandather, grandmother. And the transer

o autonomy goes to the eldest child or theeldest son. And many times you hear Let

my son decide. It is my son who makes the

decision. (Doctor 61)

zReasons elderly relinquish ordeer decision making

Doctors tended to think that this pattern

o protection was because many elderly

parents were uneducated and considered

by their adult children to be relatively

uninormed about medical issues.

Interviewer: Even when given the

choice, the elderly would deer?

Yes, thats right. I think it may have to do

withIm not very sureit may have to do

with education. A lot o the elderly are not

very well educated, whereas those in the

West are probably better educated. And,

thereore, our elderly patients eel that they

may deer to their children who know more,

and perhaps it has to do with wanting

their children to be involved as well.

(Doctor 63)


25/68

15


However, it is not evident that it was

as simple as an issue o dierence in

educational levels. There were accountswhich suggested this was not merely an

issue o lack o education or knowledge, but

more the adult children having difculty

trusting in their parents resilience in the

ace o adversity, or having a dierent

attitude towards decisions about treatment

at the end o lie than their parents

themselves may take. In some situations,

the elderly were able to assert their own

preerences, but in others, the elderly

parent was gracious and more concernedabout maintaining harmony than in

achieving their personal preerences.

[My ather] went through a procedure

and he became acutely breathless. Id

spoken to [athers doctor] and I said, He

doesnt want to be intubated. And he said,

Okay, lets try the non-invasive ventilation.

So we tried putting on an oygen mask. But

he was very uncomortable with it. I said,Lets just put it. And he said no. And he

told [the doctor], Dont listen to my son,

listen to my wie. She knows what I want.

And then I backed out [o the discussion].

Fortunately he came through that. But the

idea is that, he and my mum are very, very

clear. Theyd talked about this again and

again. They said they know eactly where

each o them stands. (Doctor 60)

My eperience tells me that amilies arevery important. And the power o the amily

is both eplicit and implicit. I mean, most

people when they talk about the infuence

o the amily in the decision making tend to

think o the scenario where the patient

doesnt know very much or hes a bit rail

and doddery and the amily takes over.

Well thats only part o the equation. I have

an equal number o patients who actually, I

think, i let to their own devices would

probably decide one way but or the sake o

their amily, decide another way, in order to

preserve amily harmony. And I have at least

hal a dozen patients where this has become

openly [the case], Actually I dont want.

But you know lah, my children are, [Cantonese; translation: cannot bear it]. So I

will try. (Doctor 05)

zFamily dynamics and individualmembers interests

Although most o the decisions o adult

children were ascribed to positive motives

such as protection, in some cases doctors

could ascertain that adult children might

be making decisions which werent the

wishes o their parents or even in their best

interests, but motivated by the childrens

own interests or emotional reactions to the

end o lie.

And in order to get her more comort-

able I actually probably needed to increase

her medication and, maybe, she might get a

bit drowsy. The other thing was that she

hadnt slept in about a week. And I thought,

you know, i I gave her some sedation andlet her rest, it might be [pauses] it might

give her some symptom relie. But her

daughter was dead against it because her

daughter wanted her mother to be able to

communicate. Or she wanted to be able to

communicate with her mother. She was so

consumed by her own grie that it wasnt, it

just wasnt possible to get through to her.

And then I spoke to the patients husband,

this girls ather. I eplained to him what we

were trying to do. He said to me, I under-stand what you are saying.

[Mandarin, translation: But my

daughter cannot accept it]. The daughter

cannot accept. And because o that, he was

also prepared to let his wie be like that.

(Doctor 05)

You know the ones who dont want to

let go, right? And they dont want to let go

because o misguided reasons o why they

think their ather may need [more

treatment], but a lot o the time when I

personally deal with these amilies, I think


26/68

WHAT DOCTORS SAY

16

they eel guilty. Okay, because oh, they eel,

Oh! I didnt have enough opportunity to

spend time with my ather when he waswell, so its my ault that I cant support him

and take care o him. So one o the most

important things that we need to do as

physicians, I think, is to remove guilt. And

we do that well. So [we say to the amily],

Its his illness that prevents him rom being

sustained. Its got nothing to do with you.

Okay, youve done well. Youre a great son.

Youre a great daughter. Okay, youve done

a great job taking care o your parents. So

all these we...[pauses], at least I, tend to do

this repeatedly. (Doctor 08)

zNot being a burden on theamily

A urther complication, o course, was

the act that most elderly people were

dependent on their amily or both care

and fnancial support, and their decisions

may be coloured by a consciousness o not

wishing to be a burden on their amily or adrain on their amilys resources.

The other concern is sometimes the

elderly may be worried that their ...

ultimately my amily is going to care or me.

They may need to make certain decisions

because the burden is on them. Financial

burdens, physical burdens and so on. I

suspect that also plays a part in some o

these elderly patients. And they dont want

to make certain decisions, which mayburden their amilies because o this unsaid

[concern], you know. (Doctor 63)

I mean their dear wish is to go home

and spend their days at home. But there is a

problem at home because they live with an

elderly spouse and the children are very

busy with their own lives and things like

that. They have their own children to deal

with. So it depends then on how the

dynamics play out, and how the resources

play out because i you have a patriarch who

says ok die, die, I want to go home. I dont

care what all o you think. Then sometimes

the children crumble and say ok, well take

the old man home even though they nearlypengsan [Malay; translation: collapse] rom

the stress. But there would also be other

people, you know someone else who might

say, Actually I do, I really do want to go

home. But I can see that I will be a burden

and my amily will be very stressed so I

accept that I will go to a nursing home or I

will go to a hospice. Ok so these are

decisions that are played out every day in

every hospital. Thats quite absurd and even

though in a discipline like palliative care, we

say that we like to respect peoples choices

and we know that sometimes in respecting

a choice, we may adversely impact on the

amily. And the patient himsel may not

want that at the risk o disrupting amily

harmony, being a burden etc. So you know

thats a common eample. And we accept

that. (Doctor 05)

2.3 Family patterns in makingdecisions or younger

patients

zIndependent decision makersFrom the accounts o the doctors, there

may be some phases in lie in Singapore

when people are more independent in

making treatment decisions, and some

phases when they are less so. One doctor

gave an account o patients aged around40 to 55 or 60 years who are independent

in decision-making, and younger adult

patients who retreated to a child-like

position when ill.

Lets start with the middle-aged. Im

personally getting near the age group. But

lets put it at orty to ty-ve or up to sity,

those two decades o people. I think the

majority o them wish to make decisions or

themselves especially concerning [the] end

o lie. But Ive observed that, or those

between 55 and 60, they tend to have a big


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17


amily. Even or the unmarried patients,

their eperiences are pretty similar to those

older. Below that age range, people are easyto approach or talking to about their

diagnosis and treatment. And theyre

generally the decision-maker i not the

primary decision-maker. Ive observed that

among the thirty to thirty-ve age group,

and I think it pertains to this particular

culture, their parents are still infuential on

their decision-making. Perhaps its related

to the act that they had lapsed rom a

healthy to an ill state, so their coping

mechanisms have changed. From a

previously independent mentality, they

revert to a more childlike state and pass

decision-making back to their parents, like

children and teenagers do. (Doctor 16)

Doctors who mainly treated adult patients

who are young and economically active

ound that these patients were very

independent in making their own decisions.

Normally early [names type o] cancer is

about 30 plus.

Interviewer: 30 plus? That young?

My youngest patient in [names work

contet] is 26. She came in as a stage 4

[cancer]. Yeah. She died in about 18 months.

And the only reason she saw me was because

I was the only one who wanted to help her

conserve her [appearance] and give her

adjuvant [auiliary] therapy because

everyone else just wanted to remove every-thing and she has very sensitive because she

was single; and she said she wanted to be

put in the con, with her [appearance]

intact, whether or not she died rom cancer

because she said she knew she was going to

die. So she was not going to die rom [major

disguring operation]. (Doctor 07)

zPassivity o mature minors inend o lie decisions

We did not interview many doctors who

treated patients under 21 years, the general

age o legal majority in Singapore. The

doctors we spoke to who did treat legal

minors ound that parents in Singapore

are very protective o their children, eventhose who are older adolescents or nearly

adult. In the well-educated society that

Singapore is, these children would be

highly educated; but nevertheless parents

tended to dominate decision-making and

to give legal consent, with children staying

relatively passive and uninvolved, or being

heavily inuenced by the views o their

parents.

I remember I had a [names disease]

patient aged eighteen to nineteen about

two years ago. His condition progressively

deteriorated till his passing away. I recall

that his ather was the decision-maker

throughout that period. The patient never

asked about his condition. People who did

ask were his amily members, in particular,

his ather. (Doctor 16)

And its also a bit o the amily unit. Imean in the amily unit so much o what the

children think is infuenced by the parents.

And again the parents are not always o the

same mind. So. Thats part o the issue I

think. [] I think because in the local con-

tet the parents have a lot more infuence

on their children, assent1 to the doctor will

always be there, how much o it is paren-

tally infuenced, sometimes it is hard to de-

cide. (Doctor 43)

And I think in our Singapore situation it

is a lot more eacerbated by the act that

the amily still consider them [adolescents

and those under 21 years] as children. So a

lot o them are not allowed to participate in

decision-making. (Doctor 41)

zChildren protecting theirparents, reacting romsuppressed eelings

Once again, the motivations o the

parents were usually the protection o

their children, who were also [like or the


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WHAT DOCTORS SAY

18

elderly] eared to be at risk o losing hope

i they were to know the seriousness o

their illness or poor prospects.

We nd that a lot o our [paediatric]

patients protect their parents. So that they

dont make their parents upset.

Interviewer: Tell me what happens in

these amily systems. We need to unpack a

bit more.

A lot o these parents willbasically

they dont want the child to lose the will to

live, they dont want us to tell the patient

its so serious. Basically they want them to

ght, and they want to give them hope.

But a lot o these kids will eperience death

when they are in the ward. Because some o

the other children dont make it. It may not

be epected because they had some bad

inection. So they have some eperience

with death. But because they are not

really allowed to talk about it, they dont.

And they would act up in dierent ways

being non-compliant with medication, notwanting to come to hospital. They are just

dicult. Sometimes at home their parents

cant control them. Because i the child is

teen or siteen years, the child cannot be

orced. And yet they dont want us to talk to

them. (Doctor 41)

zDoctors prevented rom talkingto minors about their diagnosisand care plans

In some situations, doctors suspectedthat older children and adolescents were

oten just echoing their parents wishes

and werent necessarily happy about the

decisions their parents were making.

However, in these cases the doctors were

oten prevented rom being able to speak

to these children alone and could not veriy

what the childrens real wishes were.

These are teenagers, eighteen [years

old]. This was kind o silly because our ward

was in [name] Cancer Centre. So you tell

them when they walk into the ward, theyre

going to see and theyre going to read. And

they [the parents] say [to the teenager], Oh,

because they dont have beds elsewhere.The whole thing becomes ridiculous. But we

try to work with the amily and dont want

to alienate them. So we dont want to go

against their wishes. What most o us would

say is, We want you to tell the child, and

we tell them why and all that. It usually

would take a ew minutes or them to agree.

But we tell them, were the child to ask us,

we will not lie. So it depends on what the

child asks. I they ask the nurse or one o

us, we would tell the truth. But in the ward,

one parent is allowed to stay with the child.

I the child isnt let alone, then they never

ask (Doctor 41)

O course i the childs older, wed tell

them we would want to listen to what the

childs opinion is. We had recently a case

where I elt the child was just saying yes or

the parents. And we have never managed

to get the child alone. But we guessedrom certain things they say to the nurses

at night, when the parents are asleep and

all that, that he really isnt happy about

continuing treatment.

Interviewer: Okay. How old is this child?

Hes, I think, ourteen or teen.

Interviewer: So he would know.

He does, he does. He had a bad time with

the treatment you see. And he didnt want

to go through with it again. But the amily

didnt want to let go. And a lot o the timethey eel they dont have the choice, that

they should carry on. Because the choice

would be to give up and let him die.

(Doctor 41)

zDoctors and parents who havediculties stopping curativetreatments or minors

As with the treatment o the elderly,

however, doctors were more able to see that

in some cases the parents o children and

even their doctors were making decisions

based on their own emotional journeys,


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19


and in particular whether they were able

to let go o their children who were acing

death.

In general we have more problems with

our oncology patients. For them, when

we rst started wed go all out to treat, to

treat, to treat. And its only when we nd

that were just causing more problems than

curing that we tell them that we should

maybe think about shiting our goals o care.

So its very hard or them to let go. Because

they have been trained to be very careul

about eposing the child to inection, about

making sure the child eats clean ood. And

monitoring blood tests. And i they are

to suddenly switch oin the sense that

they stop monitoring, and give the child

whatever she wants and all thatits very

hard or them to make the decision. It oten

takes a ew months beore they themselves

have to be convinced by their seeing how

much its not benetting the child.

(Doctor 41)

I get rustrated, because [pauses]

its because o my own personal biases. I

would probably consider giving up earlier

compared to the oncologist whos thinking,

Hey, one more round. Its that kind o

thing. And, in paediatrics particularly, theres

a big problem because its the parents who

are asking or the urther chemotherapy,

and the urther aggressive therapy. And

I never really know how much o that isthe childs decision. It could be the childs

decision, [but] I dont know, as it is a amily

thing. That is something I struggle with. So

sometimes I eel that we are all just moving

down this aggressive route, and theres not

enough voices gone into, Lets go a bit

more into comort care and let the kid have

a chance to play and enjoy whatever couple

o months he has. (Doctor 43)

So I said, Why is he getting this? So

she [the treating doctor] said, He very

poor-thing ah, hes only siteen years old.

Interviewer: So you do not let a siteen-

year-old die.

Its dicult or her. I think so. In [namesspecialty], we get very close to the patient.

We get very close to patients and the whole

amily. This is [due to] repeated visits, you

see? So the rapport is much stronger than,

say, with other doctor-patient relationships.

Yeah. So it is dicult.

Interviewer: So, sorry this is my psychiatry

hat going on. I start wondering, i the

doctor cant let go, how does one epect

the mother to let go?

Yes! That was my eact question. So one

o the [my] projects is to help the doctor

recognize [the problem], and help the

doctor, because i the doctor cannot let go,

then that is the time when the doctor needs

help. (Doctor 14)

2.4 The practical consequenceso not involving amilies in

decisions

The doctors said that it was neither realistic

nor possible to speak to patients frst about

their condition, or to exclude amilies rom

making decisions or medical disclosures

to patients. Instead, the common practice

in Singapore was to speak to the amily

members frst beore breaking bad news

to patients. I a doctor tried to speak

confdentially to a patient frst, this would

upset amily members who might lodgecomplaints against the doctor, threaten

lawsuits or take the patient to another

healthcare provider.

Oh! Huge issues here, partly because

on one hand our laws seem to suggest one

thing i.e. best interest as decision; but on

the other hand, clinical practice seems to

always send the message that amily here

in Singapore are o prime importance.

These reasons ranging rom yes, it is to

the patients best interest that we involve

the amily in decision-making to the more


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WHAT DOCTORS SAY

20

cynical, protect backside, patient dies, it is

the relatives that are going to sue you, not

the patient. (Doctor 13)

zCompromise solutions put toamilies regarding disclosure

Most doctors did believe that patients had

to know about their diagnosis in general

terms, to understand and agree in general

terms to their treatment, and to know in

broad terms i they were at the end o lie.

This was important to doctors because

patients did have to understand why they

were undergoing uncomortable or evenpainul procedures, and because patients

should have the opportunity at the end

o their lives to settle their aairs and say

goodbye to people important to them as

they wished.

She had breast cancer, and she seemed

to preer her amily to take charge o

everything. It went on until the point

when the amily said I was to send her ormastectomy without telling her about it

or the diagnosis. But I said, You cant do

that! Shes having her breast walloped.

(Doctor 03)

For someone who doesnt know the

diagnosis, Id speak to them separately,

Id try to get the amily to understand the

importance o her knowing the diagnosis,

so as to be able to get the treatment. So as

I said, using the same strategy to convincethem that its necessary but telling them that

it doesnt mean you have to use terriying

words, to give every bit o inormation.

But she has to understand that its serious,

serious enough to have serious treatment,

enough to give consent. So usually that

works. And then I have to go back to the

patient to nd out i she wants to make the

treatment decision hersel, or she wants to

delegate. (Doctor 03)

zUnproductiveness o hiding thetruth

In act, many doctors said that mostamilies attempts to hide inormation

rom their parents were doomed to ail,

and elderly patients and children tended

to know what was happening, i not rom

their setting then rom the behaviour o

those around them. The problem then

with withholding inormation was that

it blocked any ability or the patient and

amily to communicate honestly about

the situation, while not enabling any truly

blissul ignorance.

And she [a patient] lived with a very

protective daughter who obviously ound

it very hard to accept [the situation], and

unortunately, she had a very aggressive

cancer with a prognosis o three months or

less. And rom the day she was diagnosed,

her daughter told the attending physicians

not to tell her the diagnosis. When she [the

patient] came to me, she was illiterate andshe didnt know it was the Cancer Centre.

She actually said, Why am I still having so

much pain and problems, when the surgeon

has taken out this growth, this lump, and I

should be ok by now? Thats why, in terms

o damage control, palliative care is [not best

oered] at the tail end. I you had handled

it better upstream, in a more sensitive and

easier way[tails o] I dont know what

to say. What do you say to her? The truth

is that you have symptoms because o thecancer. The cancer is still there! You know?

No, no! The surgeon said it was technically

too dicult to operate, which is why I must

take oral medicine. And I said, What is it

that is so dicult to operate that it doesnt

get better? And her daughter said I mustnt

tell. So thats why I had to skirt round that

issue. That was the rst time I met her,

and I hadnt had time to get to know her.

Skirt round the issue, and skirt round the

issue. (Doctor 03)


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zHow to break bad news to apatient

The doctors we spoke to all disapprovedo ull collusion o doctors with amilies in

completely hiding diagnoses and terminal

prognoses rom patients. Instead, most

o them advocated a sensitive approach

where they frst approached the amily and

prepared them or the news, then discussed

the patient with them and helped the amily

to decide how inormation-giving should

be broached with the patient.

And so, they [the patient] will know.

Eventually, they will know. Its how you tell

them. So, like I said, discuss with the amily.

I the patient is very much in charge o

himsel, discuss this with the patient and the

amily together. Usually, they [the doctors]

try to do a bit o investigative work. They

would sugar-coat it, in the local contet

we sugar-coat it and tell a little bit to the

amily rst, and then decide, You tell, or I

tell? Somebody has to tell. Sometimes, theamily cannot cope. [They] say, Doctor, can

you tell? I say, Sure, Id be happy to. But

even beore I tell, Id say, Let me see him

or a ew times. Let me gauge this person.

You tell me what hes like at home. Then, let

me talk to him. Let me gauge his responses.

Then, well nd the right words to tell.

Interviewer: So, sounds like or you, not

telling, which was discussed at the [medical

ethics] conerence, is not an option. But, at

the same time, you oten involve the amilybeore you tell the patient.

Unless the patient asks me, What did

the [investigative test] show? Is it good, or

is it no good? And beore that, even when

they get consent or the [test], wed say that,

Well, there is a suspicion that your [names

What Doctors Say About Care of the Dying

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