Clinicians' Experience with and Attitudes toward Discussing Advance Directives with Terminally Ill Patients and Their Families in a Chinese Community

Abstract

Background:

Although advance directives (ADs) are already exercised in many Western countries, cultural differences surrounding death and dying may potentially pose challenges to the implementation of ADs in a Chinese community. It is therefore relevant to explore the experience with and attitudes towards ADs of health care professionals, who are trained in Western medicine but working in a Chinese cultural setting. Hong Kong represents a unique setting for this.

Objective:

The study objective was to evaluate clinicians' experience with and attitudes towards discussing ADs with terminally ill patients and their families.

Methods:

In this descriptive pilot study, we conducted a cross-sectional questionnaire survey among doctors working in the largest teaching hospital at the University of Hong Kong.

Results:

Seventy-seven out of 269 doctors working in the surveyed departments completed the questionnaire. The majority of participants (n=72; 94%) indicated willingness to initiate discussions about ADs and 62% (n=48) supported the AD to be recognized as a legally binding document but only 49% (n=38) had past experience of such discussions.

Conclusions:

Clinicians were generally receptive of the concept of the AD, willing to practice it clinically, and supported its legal recognition. However, AD discussions were an infrequent encounter, hence many clinicians lack experience and are unfamiliar with relevant guidelines. Large-scale studies within the health care professions as well as qualitative studies further exploring potential barriers should follow.

Introduction

The advance directive (AD) for health care is a statement in which a mentally competent person indicates his wishes for health care when he becomes no longer competent in the future.^1,2 Common formats of the AD include living will and durable power of attorney for health care in the United States.^2,3 AD serves as a tool to exercise patients' autonomy in determination of their own health care and to respect the principle of informed consent when they are terminally ill, in a state of irreversible coma, or in a persistent vegetative state.⁴

Although ADs have already been discussed and exercised in countries such as Australia, Canada, United Kingdom, Singapore, and the United States,^5,6 it is still new to the general public in Hong Kong. The Law Reform Commission of Hong Kong recommended promotion but not legislation of the AD in a report released in 2006, with the argument that most people in the community have little knowledge on the issue.¹

In Hong Kong where the population is predominantly Chinese, the culture and values of society differ from those in Western countries. With Chinese culture being more family-centered, a patient's individual autonomy plays a less important role in decision making.^7,8 Chinese cultural taboos surrounding issues of terminal illness and death also need to be considered in discussion of end-of-life care. These cultural differences may potentially pose challenges to the effective implementation of the AD in a Chinese community.⁹

Attitudes towards the AD among patients or elders in Hong Kong were investigated in recent years and showed increasing awareness and acceptance of the concept.^10–12 In view of clinicians' crucial role in introducing the concept of the AD to the general public, their views towards implementation of the AD are equally important to explore. It has been suggested that health care professionals in Hong Kong, who are trained in Western medicine (biomedicine) but working in a Chinese cultural setting, are doubtful about the feasibility of setting up ADs, therefore representing a potential barrier to its implementation.¹³

To examine the acceptance of ADs by clinicians in Hong Kong, we conducted a cross-sectional pilot study investigating the experience with and attitudes of clinicians towards AD discussions with terminally ill patients and their families.

Methods

Subjects

This was a cross-sectional pilot study including a convenience sample of doctors working at the Department of Medicine, Department of Surgery, or Department of Clinical Oncology at Queen Mary Hospital, Hong Kong. Participants were approached in person or invited through their office representative.

Questionnaire

Participants were asked to complete a pre-designed questionnaire in which their demographic characteristics, their willingness, and experience with initiating discussions of AD with patients, and their views towards various ethical considerations and practical issues of ADs were investigated.

Statistical analysis

Standard descriptive analyses were used to assess sample characteristics and to calculate the distribution of participants' answers in all aspects of their knowledge and attitudes towards ADs. Pearson's chi-square test and Fisher's exact test were used to test associations of demographic characteristics with willingness to initiate AD discussions. P values of less than 0.05 were regarded as statistically significant. Statistical analyses were performed using IBM SPSS Statistics 22 (IBM, Armonk, NY).

Ethics

The research protocol was approved by the institutional review board of the University of Hong Kong/Hospital Authority Hong Kong West Cluster. Written informed consent was obtained from all participants at recruitment.

Results

Seventy-seven (Medicine: 40; Surgery: 31; Clinical Oncology: 6) out of the 269 doctors working in the surveyed departments completed the questionnaire. Demographic characteristics of the study respondents are shown in Table 1. The median age of the participants was 33 (5th to 95th percentiles: 23.6–44.4), while the median number of years of clinical experience was 8 (5th to 95th percentiles: 1–20). The male:female ratio was similar to that of doctors practicing in Hong Kong, but the median age of the participants was slightly younger compared to all doctors employed by the Hong Kong Hospital Authority (male: 69%; median age: 38 years).¹⁴

Table 1.

Demographic Characteristics of Respondents

	Total N	Willing to discuss (%)	Not willing to discuss (%)	P Value^a
Total N	77	72 (93.5)	5 (6.5)
Age (years)
≤35	46	41 (89.1)	5 (10.9)	0.150^b
≥36	27	27 (100.0)	0 (0.0)
Missing data	4
Gender
Male	52	49 (94.2)	3 (5.8)	0.657^b
Female	25	23 (92.0)	2 (8.0)
Specialty
Medicine	40	38 (95.0)	2 (5.0)	0.557
Surgery	31	29 (93.5)	2 (6.5)
Clinical oncology	6	5 (83.3)	1 (16.7)
Years of medical practice (years)
0–10	49	45 (91.8)	4 (8.2)	0.300^b
11–60	28	27 (96.4)	1 (3.6)
Religion
With religious beliefs	35	31 (88.6)	4 (11.4)	0.174^b
Without religious beliefs	41	40 (97.6)	1 (2.4)
Missing data	1
Previous experience with AD discussion
With previous experience	38	37 (97.4)	1 (2.6)	0.358^b
Without previous experience	39	35 (89.7)	4 (10.3)

P values of the associations of demographic characteristics with clinicians' willingness to initiate AD discussions calculated comparing across category levels with Pearson's chi-square test.

Fisher's exact test.

Of the clinicians who completed the questionnaire, 94% (n=72) were willing to initiate AD discussions with terminally ill patients and their families. Fifty-one percent (n=39) of the doctors had no experience initiating AD discussions, while 30% (n=23) had such discussions at a frequency of either once or less than once per month (see Table 2). Sixty-two percent (n=48) supported the AD to be recognized as a legally binding document. Eighty-eight percent (n=68) knew about the relevant AD guidelines issued locally, while 10% (n=8) were not aware of its existence. We saw a tendency that higher age and longer clinical experience seemed to increase the positive attitudes towards ADs. However, the differences were not statistically significant, possibly due to limited power.

Table 2.

Experience with AD Discussion and Relevant Guidelines

	n (%)
Initiated AD discussions
Yes (%)	38 (49.4)
No (%)	39 (50.6)
Frequency
0 (%)	39 (50.6)
≤1/month (%)	23 (29.9)
2–5/month (%)	8 (10.4)
5–10/month (%)	7 (9.1)
Familiarity with Hospital Authority^a guidelines
Very familiar (%)	16 (20.8)
Know its existence but not very familiar (%)	52 (67.5)
Not aware of its existence (%)	8 (10.4)
Missing data (%)	1 (1.3)
Aware of AD standardized form recommended by Hospital Authority^a
Yes (%)	44 (57.1)
No (%)	33 (42.9)

The Hong Kong Hospital Authority is a statutory body managing all public hospitals in Hong Kong.

Discussion

This pilot study investigating a small subset of doctors in Hong Kong indicated that local clinicians are generally receptive of the concept of the AD, willing to practice it clinically, and support its legal recognition. However, AD discussions are an infrequent encounter, hence many clinicians lack experience and are unfamiliar with relevant guidelines.

Our finding was compatible with those of two previous local studies targeting third- to fifth-year medical students and professional nurses in which the majority (79%¹⁵ and 89%,¹⁶ respectively) supported the use of ADs. Previous overseas studies also reported high acceptance and support of the use of ADs among health professionals.^17,18

The positive attitude towards ADs might reflect the fact that the participants have all trained in Western medicine (biomedicine), where the concept of the AD is introduced in their medical ethics education, in which students are trained by conducting in-depth clinical case analysis considering both clinical context and patient-, family-, societal- and cultural values—and therefore the ambiguity towards AD discussion is not as prominent as previously suggested.¹³ Moreover, most local doctors, even though they have been trained in local modern institutions (i.e., teaching biomedicine), are quite familiar with the local cultural setting and the influences (and at times conflicting values) from both traditional Chinese culture and modern biomedicine.

In local community-based studies, 88% of old age home residents^10,19 and 76.4% of local citizens¹⁶ indicated interest in ADs, while 63% of Chinese patients with advanced malignancies actually set up an AD after the discussion was initiated by their clinicians.¹² In another local cross-sectional study done among elderly patients in 2009, 49% said they would consider having an AD if it were formally legislated.¹¹ A qualitative study done in 2012 further revealed that participants would not totally submit to family autonomy.²⁰ These results indicate that despite the common conception of cultural barriers towards discussions on end-of-life issues,⁹ many Hong Kong citizens are at least interested in knowing more about the AD, and the dominance of traditional culture in end-of-life decisions in modern Chinese communities is possibly diminishing.

Furthermore, the AD may possibly encourage family discussions on end-of-life issues. Patients may wish to explain their health care decisions to their family and listen to their opinions before actually setting up an AD. In this way, ADs may actually encourage such conversations, thus combining values of family-centered decision making and patient autonomy.

However, since there still seems to be insufficient understanding about ADs within the community¹¹ as well as inadequate promotion,¹³ cultural issues related to a more family-centered decision making process as well as dominant taboos concerning dying and death continue to represent challenges to health professionals working in end-of-life care in Chinese communities across the world.^7,8

Limitations

This is the first study to investigate clinicians' experience with and attitudes towards ADs in Hong Kong. Being a small-scale pilot study, several limitations should be noted. The small sample size and recruitment of subjects done by convenience sampling and limited to a subset of doctors all working at a single hospital reduces sample representativeness and generalizability of results. Also, bias in recalling the frequency of past AD discussions may potentially be an issue. Moreover, ethical and practical views towards ADs in the questionnaire were preset, limiting details of the doctors' views. Lastly, we cannot exclude the possibility that doctors who were not willing to participate in the survey would also be less willing to initiate discussions on an AD, in which case the findings would be attenuated.

Conclusions

This study provides preliminary results that the majority of clinicians, who are educated in Western medicine but working in a Chinese cultural setting, seem willing to initiate AD discussions with terminally ill patients and their families. Further investigations should follow, assessing whether local health professions in general support the use of AD, with similar studies of larger sample size across different hospitals in Hong Kong as well as other Chinese communities. Qualitative studies would also be essential to identify and understand the perceived barriers to implementation of the AD in more detail.

Footnotes

Acknowledgments

We would like to thank W. C. Y. Leung, B. Hou, W. H. Chung, and S. H. Lau for their support and assistance in the study; Mr. Eric Chan for his assistance in statistical analysis; and Dr. V. H. F. Lee, Department of Clinical Oncology, The University of Hong Kong, for his valuable advice.

Author Disclosure Statement

No competing financial interests exist.

School of Public Health,Li Ka Shing Faculty of Medicine,The University of Hong Kong Questionnaire

Topic of study

Willingness of clinicians to initiate discussions about Advance Directives (ADs) with terminally ill patients and their families

A) Personal particulars

Age : ________

Gender : □ Male □ Female

Specialty : ______________________________________________

Years of medical practice : ___________

Religion : □ Yes (Please specify : ____________________)

□ No

B) Experience with initiation of AD

(Please tick the appropriate box)

1. Have you initiated discussions about ADs with terminally ill patients and their families before?

□ Yes □ No (please proceed to 3)

2. How often do you initiate such discussions?

□ Once per month □ 2–5 times per month

□ 5–10 times per month □>10 times per month

3. How familiar are you with the Hospital Authority clinicians' guideline for assisting patients to set up their AD?

□ I am very familiar with it.

□ I know it exists but I am not very familiar.

□ I am not aware of its existence.

4. Are you aware that there is a standardized form recommended by the Hospital Authority for setting up AD?

□ Yes □ No

C) Perspective towards initiation of ADs

At this moment, I am willing to initiate discussions about an AD with terminally ill patients and their families.

□ Yes □ No

(Please tick the appropriate box)

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