Out of 288 Hong Kong cancer patients, 92.3% include themselves in decision-making, 71% prefer joint decision-making: with family (67.6%), with doctor (57.8%), with doctor plus family (54.7%), with family minus doctor (12.9%), and with doctor minus family (3.1%). <5% want decision-making by “doctor-alone” and <1% desire decision-making by “family-alone”. Harmony, communication and responsibility are reasons for family participation. Most patients prefer “specialist” (92%) for information, followed by “family” (85%), “friends” (58%), and “GP” (53%). Trust in doctors and prospects for controlling/curing disease are important factors in decision-making. Patients want to participate and be listened to rather than make decisions. Doctors should not disclose information to family without patients’ permission, nor withhold information from patient on family’s request. Only 25% of patients have discussed post-competent treatment with others and 7% have heard of Advance Directive (AD); 24% refuse to discuss it. After AD has been explained to them, 66% remain reluctant to sign one, preferring to leave oral instructions or appoint family as proxy decision-makers. The family’s decision-making role increases when patients become incompetent. The top reason for signing AD is to receive preferred post-competent treatments, and for not signing it, difficulty with making a prospective decision. The implications of these findings will be discussed.


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pp. 109-133
Launched on MUSE
Open Access
Archive Status
Archived 2017
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