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ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2010.01072.x Advance directives and life-sustaining treatment: informed attitudes of Hong Kong Chinese elders with chronic disease Esther Mok PhD, RN, RM Professor, School of Nursing, The Hong Kong Polytechnic University, Hong Kong Fion H Ting BSc, RN Registered Nurse, Department of Medicine, Queen Mary Hospital, Hong Kong Ka-po Lau MPhil Research Associate, School of Nursing, The Hong Kong Polytechnic University, Hong Kong Submitted for publication: 3 June 2010 Accepted for publication: 29 September 2010 Correspondence: Ka-po Lau Research Associate School of Nursing The Hong Kong Polytechnic University Hong Kong Telephone: (852) 3400 8175 E-mail: [email protected] MOK E, TING FH & LAU K-P (2010) MOK E, TING FH & LAU K-P (2010) Journal of Nursing and Healthcare of Chronic Illness 2, 313–319 Advance directives and life-sustaining treatment: informed attitudes of Hong Kong Chinese elders with chronic disease Aim. The aim of this study was to examine attitudes towards advance directives and life-sustaining treatment of Chinese older persons with chronic disease in Hong Kong. Background. The concept of advance directives and related issues are fairly new to people in Hong Kong but they are open to talk about concerns at the end of life rather than treating death as a taboo. Older persons with chronic disease are a group to which end-of-life decision making is particularly relevant. Studies on attitudes of Chinese older persons with chronic disease towards advance directives and life-sus- taining treatment will be useful for culturally sensitive practice. Method. A cross sectional survey was carried out in 2009 in the in-patient wards of a hospital in Hong Kong. Advance directives and related concepts were explained to participants before they were interviewed to ensure they had sufficient background information to give informed attitudes. Quantitative data regarding their attitudes towards the use of advance directives and limited use of life-sustaining treatment were collected. Conclusions. Two hundred and nineteen participants completed the survey. Being informed of the concept of advance directives and related issues, in general they were able to take side regarding their attitudes regarding advance directives and life- sustaining treatment. They also had a general positive attitude towards the use of advance directives and limited use of life-sustaining treatment for a good death. To them, family was an indispensable part of end-of-life decision making. Relevance to clinical practice. While concepts such as advance care planning, advance directives and life-sustaining treatment are fairly new to people in Hong Kong, clinicians should make sure patients are fully informed before they are required to make any life-and-death decision. Family members should also be involved in the process of discussion and decision-making. Ó 2010 Blackwell Publishing Ltd 313

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Page 1: Advance directives and life-sustaining treatment: informed attitudes of Hong Kong Chinese elders with chronic disease

ORIGINAL ARTICLE doi: 10.1111/j.1752-9824.2010.01072.x

Advance directives and life-sustaining treatment: informed attitudes of

Hong Kong Chinese elders with chronic disease

Esther Mok PhD, RN, RM

Professor, School of Nursing, The Hong Kong Polytechnic University, Hong Kong

Fion H Ting BSc, RN

Registered Nurse, Department of Medicine, Queen Mary Hospital, Hong Kong

Ka-po Lau MPhil

Research Associate, School of Nursing, The Hong Kong Polytechnic University, Hong Kong

Submitted for publication: 3 June 2010

Accepted for publication: 29 September 2010

Correspondence:

Ka-po Lau

Research Associate

School of Nursing

The Hong Kong Polytechnic University

Hong Kong

Telephone: (852) 3400 8175

E-mail: [email protected]

MOK E, TING FH & LAU K-P (2010)MOK E, TING FH & LAU K-P (2010) Journal of Nursing and Healthcare of

Chronic Illness 2, 313–319

Advance directives and life-sustaining treatment: informed attitudes of Hong Kong

Chinese elders with chronic disease

Aim. The aim of this study was to examine attitudes towards advance directives and

life-sustaining treatment of Chinese older persons with chronic disease in Hong Kong.

Background. The concept of advance directives and related issues are fairly new to

people in Hong Kong but they are open to talk about concerns at the end of life rather

than treating death as a taboo. Older persons with chronic disease are a group to

which end-of-life decision making is particularly relevant. Studies on attitudes of

Chinese older persons with chronic disease towards advance directives and life-sus-

taining treatment will be useful for culturally sensitive practice.

Method. A cross sectional survey was carried out in 2009 in the in-patient wards of a

hospital in Hong Kong. Advance directives and related concepts were explained to

participants before they were interviewed to ensure they had sufficient background

information to give informed attitudes. Quantitative data regarding their attitudes

towards the use of advance directives and limited use of life-sustaining treatment were

collected.

Conclusions. Two hundred and nineteen participants completed the survey. Being

informed of the concept of advance directives and related issues, in general they were

able to take side regarding their attitudes regarding advance directives and life-

sustaining treatment. They also had a general positive attitude towards the use of

advance directives and limited use of life-sustaining treatment for a good death. To

them, family was an indispensable part of end-of-life decision making.

Relevance to clinical practice. While concepts such as advance care planning, advance

directives and life-sustaining treatment are fairly new to people in Hong Kong,

clinicians should make sure patients are fully informed before they are required to

make any life-and-death decision. Family members should also be involved in the

process of discussion and decision-making.

� 2010 Blackwell Publishing Ltd 313

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Key words: attitudes, chronic illness, end-of-life decision making, older people

Introduction

An advance directive represents documentation in the form of

health care a person wants to have at a future time when the

person loses the capacity to make such decisions. Advance

directives have two common forms: the living will and the

durable power of attorney for health care. The former allows

a person to leave health care instructions while the latter

allows the person to designate someone else to make health

care decisions on his/her behalf. The two forms of advance

directives are not mutually exclusive and it is suggested that a

combination of them can help solve some problems encoun-

tered during the execution of an advance directive (Brown

2003). The study reported in this paper examined the

attitudes of Hong Kong Chinese elders with chronic disease

towards advance directives and life-sustaining treatment.

Background

Advance directives uphold the principle of autonomy in

biomedical ethics (Beauchamp & Childress 2009). The

advocacy and the awareness of advance directives can also

be regarded as a response to high medical costs (Schneider-

man et al. 1992) and a move from medical paternalism to

consumerism (Bruce-Jones 1996) respectively. Advance direc-

tives have legal status in the USA, most Canadian provinces,

Singapore, some Australian states, New Zealand, Denmark,

the UK, the Netherlands, Belgium, France, Spain, Austria and

Hungary (Besirevic 2010). Irrespective of whether legally

recognised or not, advance directives always have clinical

relevance wherever life-sustaining treatment is applied.

Despite its good will, it appears that an advance directive

does not bring as much good as wished in terms of quality of

end-of-life care (Teno et al. 2007), the accuracy of surrogate

decision makers (Shalowitz et al. 2006), reliability, validity

and interpretation of the living will (Fagerlin & Schneider

2004, Winter et al. 2010), and medical treatments and

treatment costs (Schneiderman et al. 1992). It is suggested

that singly focused interventions like the Patient Self-Deter-

mination Act passed in 1990 in the USA and its reliance on

the completion of advance directives will not improve the

quality of end-of-life care (Teno et al. 2007). Advance care

planning, a broader, ongoing and interactive process involv-

ing not only or not necessarily a document of advance

directives is believed to be more beneficial (Jordens et al.

2005). In a recent randomised controlled trial, advance care

planning is found to improve end-of-life care and patient and

family satisfaction, and reduce stress, anxiety and depression

in surviving relatives (Detering et al. 2010).

Hong Kong has neither statute nor case law on the legal

status of advance directives; however, doctors are required to

respect the wish of a patient expressed through advance

directives even if they are contrary to their personal beliefs,

unless the directives involve unlawful acts such as euthanasia,

according to Code of Professional Conduct for the Guidance

of Registered Medical Practitioners (Medical Council of

Hong Kong 2009). While the Hong Kong Government

recognises the potential usefulness of advance directives, it

also recognises that the concept is fairly new to Hong Kong

people and touches upon a wide range of issues beyond its

legal and practical aspects; therefore, it has no intention to

actively advocate or encourage the public to make advance

directives at this stage. Instead, it introduces the concept of

advance directives to the public and invites views on the

concept in order to inform future directions and actions

(Food & Health Bureau 2009). Empirical studies concerning

end-of-life decision making are few but start to grow in

number in recent years in Hong Kong (Hui et al. 1997, Lee

et al. 2003, Chu & Woo 2004, Pang et al. 2004, Sham et al.

2007, Tang et al. 2007). In general, these studies found that

people in Hong Kong might not have sufficient knowledge

regarding advance directives and related issues but they were

open to talk about concerns at the end of life instead of

considering death a taboo subject as traditionally believed to

be the case in Chinese societies (Tse et al. 2003).

In December 2009, the Hong Kong government issued a

consultation paper on advance directives to collect views

from the public, the medical and the legal professionals (Food

& Health Bureau 2009). It is high time for local researchers

to make further efforts to contribute to the development of

advance directives and related issues. Like other developed

countries, Hong Kong is facing an ageing population. The

expectations of life at birth for male and female for the year

2008 were 79Æ3 and 85Æ5 respectively (Census & Statistics

Department 2010). The percentage of the population aged 65

and over was projected to increase from 12% in 2006–26%

in 2036 and the median age of the population, from 39Æ6–

46Æ1 (Census & Statistics Department 2007). In particular,

69Æ9% of people aged 65 and above had chronic health

conditions as told by practitioners of Western medicine in

Hong Kong (Census & Statistics Department 2008). Patients

with eventually fatal chronic disease often receive routine

E Mok et al.

314 � 2010 Blackwell Publishing Ltd

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treatments in response to health problems rather than

treatments arising from planning that incorporates the

patient’s situation and preferences (Lynn & Goldstein

2003). Older persons with incurable, progressive, eventually

fatal and disabling disease can be considered a group to

which end-of-life medical decision making is particularly

relevant.

Aim

To examine the attitudes of Hong Kong Chinese elders with

chronic disease towards advance directives and life-sustaining

treatment.

Methods

This is a cross-sectional survey. Data were collected in the

medical admission wards of the Queen Mary Hospital. The

Hospital is one of the largest acute regional hospitals of Hong

Kong managed by the Hospital Authority, a statutory body

accountable to the Hong Kong government. From January to

November 2009, there were 1734 admissions to the medical

admission wards.

Participants

A convenience sample was recruited from September 2009–

February 2010. Inclusion criteria included Chinese people

aged 60 years or above, with chronic disease, mentally alert

and able to communicate in Cantonese. Patients with

cognitive impairment, suffering from mental illness or in

unstable condition (e.g. vital signs or haemodynamically

unstable) were excluded.

Measurement

The questionnaire consisted of questions collecting demo-

graphic data and medical history, and exploring respondents’

attitudes towards advance directives and life-sustaining

treatment. Regarding advance directives, respondents were

asked whether they would consider prepare one if it had legal

status and why, and whether they wanted to discuss issues

related to advance directives with others and with whom.

Questions regarding life-sustaining treatment were adopted

from previously published studies (Blackhall et al. 1999, Lee

et al. 2003), examining respondents’ views on life-sustaining

treatment: the respondents were asked to respond to eight

statements about life-sustaining treatment using a 5-point

Likert scale, with 1 representing strongly disagree, 2 disagree,

3 not sure, 4 agree, and 5 strongly agree.

Data collection

Individual, face-to-face interviews were conducted in the in-

patient wards by the second author, who worked in the

Hospital as a registered nurse. Advance directives are fairly

new to Hong Kong people (Food & Health Bureau 2009) and

knowledge of life-sustaining procedures was poor among

older people in Hong Kong compared with their counterparts

in Western countries (Hui et al. 1997). In order to ensure

participants would have sufficient background knowledge to

express their views on advance directives and life-sustaining

treatment, the following information was explained and

given to them:

• A report on substitute decision making and advance

directives in relation to medical treatment (The Law Re-

form Commission of Hong Kong 2006).

• A model form of advance directive proposed by The Law

Reform Commission of Hong Kong (2006).

• An information sheet that explained various aspects of

cardiopulmonary resuscitation, including its definition,

risks and benefits, success rates and prognostic indicators;

the concept of vegetative state; and picture illustrations of

cardiopulmonary resuscitation, artificial ventilation and

intravenous fluid infusion.

The interviewer then verbally administered the question-

naire to each participant. Each interview lasted for an average

of about 30 minutes. Participants’ medical histories were

retrieved from the computerised electronic patient record.

Data analysis

Data were analysed using SPSSSPSS 15.0 (SPSS Inc., Chicago, IL,

USA). Descriptive results were reported by frequencies,

percentages, means and standard deviations. Chi-Square test

was used to examine if the proportion of respondents who

agreed with limited use of life-sustaining treatment was

different from those who disagreed or were undecided.

Ethical considerations

The study aim was explained to each participant. Written

informed consent was obtained. Ethical approval was

obtained from a University and Hospital Authority Research

Ethics Committees.

Results

Respondents’ characteristics

A total number of 240 eligible patients were identified

between September 2009–February 2010. Nine of them

Original article Advance directives and life-sustaining treatment

� 2010 Blackwell Publishing Ltd 315

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refused to participate and 12 failed to complete the interview

(four felt too tired to continue, six could not understand the

topic, and two had severe hearing impairments that made

continuation of the interview impossible), resulting in 219

completed interviews. Respondents’ background characteris-

tics are summarised in Table 1. They aged from 60–92 years,

having 1 to 11 chronic diseases needing regular medical

follow up. The majority of them were female (60Æ7%), now

married (58Æ0%), living with family (82Æ2%), with primary

education or less (69Æ9%) and perceived their health as very

poor, poor or fair (91Æ3%). About 80% of them had not

heard about advance directives before they joined this study.

Attitudes towards the use of advance directives

Respondents’ attitudes towards the use of advance directives

are summarised in Table 2. If advance directives were

legalised in Hong Kong, about half of the respondents

(49Æ3%) would consider preparing an advance directive and

the rest, either would not consider it or were undecided. For

those who considered preparing an advance directive, the

most frequently selected reason was to ensure a comfortable

end of life without prolonging suffering (71Æ3%). For those

who did not consider preparing one, the most frequently

selected reason was that they believed their family would

make decisions for them when needed (39Æ1%). 39Æ3% of

respondents wanted to discuss issues related to advance

directives with others and most of them (91Æ9%) wanted to

discuss them with their family.

Table 1 Respondents’ characteristics (N = 219)

Characteristic n (%)

Sex

Male 86 (39Æ3)

Female 133 (60Æ7)

Age [mean (SD)] 72Æ7 (8Æ0)

Educational level

Nil 67 (30Æ6)

Primary 86 (39Æ3)

Secondary 52 (23Æ7)

Tertiary 14 (6Æ4)

Religious belief

Nil 79 (36Æ1)

Catholic/Protestant 40 (18Æ3)

Buddhist 34 (15Æ5)

Ancestor worship 60 (27Æ4)

Others 6 (2Æ7)

Marital status

Married 127 (58Æ0)

Widowed 71 (32Æ4)

Divorced/Separated 12 (5Æ5)

Single 9 (4Æ1)

Living arrangement

Living alone 27 (12Æ3)

Living with family 180 (82Æ2)

Living in old age home 10 (4Æ6)

Others 2 (0Æ9)

Having children

Yes 202 (92Æ2)

No 17 (7Æ8)

Total number of chronic disease needing regular

follow up [mean (SD)]

3Æ5 (1Æ9)

The five most prevalent chronic diseases

Hypertension 153 (69Æ9)

Heart diseases 90 (41Æ1)

Diabetes mellitus 72 (32Æ9)

Cancer 59 (26Æ9)

High cholesterol 46 (21Æ0)

Self-perceived health status

Very poor 27 (12Æ3)

Poor 87 (39Æ7)

Fair 86 (39Æ3)

Good 16 (7Æ3)

Very good 3 (1Æ4)

Heard about advance directives before joining this study

Yes 41 (18Æ7)

No 178 (81Æ3)

Table 2 Attitudes towards the use of advance directives

Variable n (%)

Considered using an advance directive if it was legalised (N = 219)

Yes 108 (49Æ3)

No 64 (29Æ2)

Undecided 47 (21Æ5)

The three most prevalent reasons for considering using an advance

directive* (N = 108)

Ensure a comfortable end of life without prolonged

suffering

77 (71Æ3)

Avoid causing a burden to family 42 (38Æ9)

Hope that wishes will be respected 38 (35Æ2)

The three most prevalent reasons for

not considering using an advance directive* (N = 64)

My family will decide for me 25 (39Æ1)

Let nature take its course 16 (25Æ0)

No need to think about it now 15 (23Æ4)

Wanted to discuss issues related to advance directives with others

(N = 219)

Yes 86 (39Æ3)

No 121 (55Æ3)

Undecided 12 (5Æ5)

Wanted to discuss issues related to advance directives with* (N = 86)

Family 79 (91Æ9)

Doctor 8 (9Æ3)

Friend 5 (5Æ8)

Others 2 (2Æ3)

*Multiple responses were allowed.

E Mok et al.

316 � 2010 Blackwell Publishing Ltd

Page 5: Advance directives and life-sustaining treatment: informed attitudes of Hong Kong Chinese elders with chronic disease

Attitudes towards life-sustaining treatment

Respondents’ attitudes towards limited use of life-sustaining

treatment are summarised in Table 3. The majority of our

respondents supported limited use of life-sustaining treat-

ment, according to particular medical condition and patients’

wish. In all the eight items presented, the proportion of

respondents who agreed with limited use of life-sustaining

treatment was significantly greater than those who disagreed

or were undecided (p < 0Æ001).

Discussion

In this study, 219 Chinese elders aged 60 and above with

chronic disease in Hong Kong responded to questions

regarding their attitudes towards advance directives and

life-sustaining treatment. The majority of them had not heard

about advance directives before they joined this study. The

reported attitudes represent informed attitudes since the

concept of advance directives and various terms of life-

sustaining treatment were explained to them beforehand. The

majority of our respondents not only were able to take side

rather than being undecided, they also showed a positive

attitude towards the use of advance directives and the limited

use of life-sustaining treatment. A number of studies have

shown that when patients were aware of the real survival

rates of life-sustaining treatment, they were less likely to

desire this intervention (Murphy et al. 1994, O’Brien et al.

1995, Kerridge et al. 1999). A study found that up to 20% of

respondents who were older persons in Hong Kong changed

their mind and declined cardiopulmonary resuscitation after

they knew the true outcome of the procedure (Hui et al.

1997). All these findings support the utmost importance of

‘informed’ decision making in end-of-life care.

‘A comfortable end of life without prolonged suffering’

was the most frequently selected reason for considering using

an advance directive if it was legalised (71Æ3%). In a local

study of older persons with advanced chronic obstructive

pulmonary disease, alleviation of illness burdens and peaceful

and dignified death was also found to be the primary concern

behind decision making of limiting life-sustaining treatment

(Pang et al. 2004). A good death seems to be the primary

concern behind considering using advance directives in

Chinese elders with chronic disease.

From responses to various questions it was evidenced that

in our sample of Chinese elders with chronic disease, family

played an important role in end-of-life decision making. For

those respondents who did not consider using an advance

directive if it was legalised, ‘my family will decide for me’ was

the most frequently selected reason (39Æ1%). For those who

considered using one, ‘avoid causing a burden to family’ was

the second most frequently selected reason (38Æ9%). If

respondents wanted to discuss issues related to advance

directives with someone, they wanted to talk to their family

the most (91Æ9%). Previous literature has reported that

traditional Chinese societies were strongly family-centred:

Table 3 Attitudes towards life-sustaining treatment (N = 219)

Statements�

Disagree�

n (%)

Not sure

n (%)

Agree§

n (%) v2***

1. If life-prolonging technology exists it should always be used (�) 178 (81Æ3) 27 (12Æ3) 14 (6Æ4) 227Æ72. Doctors should generally try to keep their patients alive on

machines for as long as possible, no matter how uncomfortable

the machines are (�)

170 (77Æ6) 35 (16) 14 (6Æ4) 196Æ4

3. If a patient is dying, it is best not to prolong their life by any means (+) 11 (5Æ0) 13 (5Æ9) 195 (89Æ0) 305Æ94. Under no circumstances should life-sustaining machines be stopped (�) 145 (66Æ2) 42 (19Æ2) 32 (14Æ6) 107Æ25. It is a doctor’s duty to stop life-prolonging treatments on patients

if patients do not want them any more (+)

7 (3Æ2) 22 (10Æ0) 190 (86Æ8) 282Æ8

6. When a person is in a vegetative state, medical treatments usually

should not be used to keep them alive (+)

28 (12Æ8) 45 (20Æ5) 146 (66Æ7) 111Æ5

7. If a patient is unable to breathe without a breathing machine,

it would be wrong to take them off the machine (even if the condition

is hopeless) because that would be killing the patient (�)

148 (67Æ6) 35 (16Æ0) 36 (16Æ4) 115Æ6

8. Even if my condition were hopeless, I would want my life prolonged

as much as possible (�)

186 (84Æ9) 12 (5Æ5) 21 (9Æ6) 262Æ9

***p < 0Æ001.�Statement supporting (+) or against (�) decision to withhold or withdraw treatment in dying patients.�Patients who chose strongly disagree or disagree were grouped together as ‘Disagree’.§Patient who chose strongly agree or agree were grouped together as ‘Agree’.

Original article Advance directives and life-sustaining treatment

� 2010 Blackwell Publishing Ltd 317

Page 6: Advance directives and life-sustaining treatment: informed attitudes of Hong Kong Chinese elders with chronic disease

health care decisions were often made by the family as a

group rather than by the individual, and the principle of

autonomy played a lesser role in Chinese societies (Ip et al.

1998). The involvement of family in the documentation of

advance directives and the process of advance care planning

are particularly important for Chinese people.

Relevance to clinical practice

While concepts such as advance care planning, advance

directives and life-sustaining treatment are fairly new to

people in Hong Kong, clinicians should make sure patients

are fully informed before they are required to make any life-

and-death decision. Family members should also be involved

in the process of discussion and decision-making.

Limitations

Our study has several limitations. There was no control

group and comparisons cannot be made between informed

and not informed patients. Our sample was hospitalised older

patients with acute illness in a single hospital and thus their

views may not represent those of the general older popula-

tion. The questionnaire used hypothetical clinical scenarios;

therefore, responses to the survey might not accurately reflect

what individuals would choose in reality. Another potential

bias is that only individuals who were willing to discuss

death-related issues agreed to participate.

Conclusion

The world is facing an ageing population and the prevalence

of chronic disease in the older population is high. Advance

care planning is particularly relevant to older people with

chronic disease. In this study, it was found when Chinese

older people with chronic disease were informed of details

about advance directives and life-sustaining treatment, the

majority of them were able to take side regarding their

attitudes towards these issues rather than undecided. They

also had a general positive attitude towards the use of

advance directives and limited use of life-sustaining treatment

for a good death. To them, family was an indispensable part

of end-of-life decision making.

Acknowledgements

We would like to thank Ms SWK Wong, Departmental

Operational Manager, Department of Medicine of the Queen

Mary Hospital for approving and supporting this study. We

would also like to thank Dr PP Chen, Dr JCY Lee, Dr JKS

Yeo and Dr HY So for granting us permission to adapt their

assessment tool on attitudes towards life-sustaining treat-

ment.

Contributions

Study design: EM, FTH; data collection: FTH; data analysis:

EM, FTH, KPL and manuscript preparation: EM, FTH, KPL.

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Original article Advance directives and life-sustaining treatment

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