Vienna Ng, M.D., C.C.F.P. June 6, 2006

1. Exploring Chinese Patients’ and Families’ Wishes for Information Disclosure and Participation of Health Management Decisions During Palliative Care Vienna Ng, M.D., C.C.F.P. June 6, 2006

2. BACKGROUND • Doctors are regularly faced with the task of disclosing information to patients with life-threatening conditions • It has been shown that patients not fluent in English were more likely to be unaware of their diagnosis

3. BACKGROUND • Asian cultural groups are family-centered • A majority of Chinese population wanted information even if the news is “bad” • Most of the Chinese elderly had low level of anxiety toward death

4. SPECIFIC AIM • To explore the desires of Chinese palliative patients and families for information and participation in health management decisions during palliative care

5. METHODS • A sample of two Chinese patients and their respective family members was selected; one patient declined interview • Selection criteria: • Chinese participants • Admitted to the palliative care unit • Stable physical condition

6. METHODS • Semi-structured interviews were conducted in Cantonese and Mandarin. All interviews were tape-recorded and transcribed verbatim and translated from Chinese into English • Ethical approval was obtained from the University of British Columbia Behavioral Research Ethics Board and Vancouver Coastal Health Research Institute

7. RESULTS Sample characteristics: • Age • 70-72 years • Place of origin • Hong Kong and Mainland China • First language • Cantonese and Mandarin • Length of stay in Canada • 9-10 years

8. RESULTS • Chinese palliative patient preferred to receive information about their illness and participate in health care management • Families objected to physician telling the patient a “bad” diagnosis or prognosis and they wish to make decisions on behalf of their loved ones

9. RESULTS Non-maleficence and nondisclosure: “…she will give up on herself and lose the hope to live…although the disease is incurable, there are people who can live 3 or 5 years with the toxic lump in their body. I don’t know about the Westerners, isn’t it true that you will tell them everything directly…this does not work, we Chinese cannot tolerate that, don’t tell her…”

10. RESULTS “…the doctor told us her prognosis is six months to one year. We [my son and I] knew it but we did not tell her. The doctor told us that the toxic lump in her body is quite big but she did not know it either… My wife does not understand English and so when my son is translating for her, he did not tell his mother …”

11. RESULTS Family determination in decision making: “…she cannot think clearly [because] they are regularly giving her injections of analgesics and anti-nauseants…” “…my daughter and I will make decisions for him. He is a very quiet person. He does not talk much. He does not know how to ask questions…”

12. RESULTS Silence around death: “…one day a nurse came in with a doctor and told me this [showing me a piece of paper with the Chinese words written “you have an incurable disease; you are going to die”]…”

13. CONCLUSION • Palliative patients preferred to know information about their illness and that they wanted to participate in decision making with their families • During palliative care, family members actively protect terminally ill patients from knowledge of their condition and they wish to make medical decisions on behalf of their loved ones

14. SUMMARY • The desire for information disclosure in palliative patients does not differ from the viewpoint held by the general Chinese population • The approach of disclosing information in the Chinese should not be different from the palliative care approach that stems from the respect for autonomy

15. ACKNOWLEDGEMENTS • Dr. Wendy Yeomans (Faculty Advisor) • Ms. Pat Porterfield (Clinical Nurse Specialist, Palliative Care) • Primary Team Members in the Palliative Care Unit, VGH