Knowledge of palliative care and preference of end of life care: a cross-sectional survey of residents in the Chinese socio-cultural background of Macao

BMC Palliative Care - Tập 20 Số 1 - 2021
Kuai In Tam1, Sok Leng1, Mingxia Zhu1, Sok Man Leong1
1Kiang Wu Nursing College of Macau, Macao SAR, China

Tóm tắt

Abstract Background Since the establishment of a hospice in the year 2000 and the development of a palliative care ward in 2019, there is no study examining public’s knowledge of palliative care, nor preference of end of life care in Macao. Aim Targeting Chinese residents of Macao, the current study has 3 goals: i) to understand the level of knowledge of palliative care, ii) to explore the preference of end of life treatments, and iii) to identify the associated factors of the preference of end of life treatments. Methods A cross-sectional questionnaire survey was conducted using a structured questionnaire. The study employed non-probability quota sampling through which Macao residents aged 18 and above were recruited between July and September 2020. Results A total of 737 responses were valid. The average correct rate of palliative care knowledge ranged from 40.4% to 85.5%. Pertaining to end of life treatments, 62.0% of the respondents chose comfort care. However, almost half of the respondents agreed that life-sustaining treatments should not be stopped under any circumstances. Respondents who scored higher in palliative care knowledge and those with secondary and tertiary education were associated factors of choosing comfort care rather than life-sustaining treatments. In addition, respondents who agreed that futile life-sustaining treatments should be stopped were also associated with preference for comfort care. Conclusion The understanding of palliative care amongst Macao residents is inadequate. Despite the public’s inclination towards comfort care, it is generally believed that life-sustaining treatments should not be stopped at the end of life. The study results suggest that not only the knowledge of palliative care should be enhanced amongst the general public in Macao, but information about life-sustaining treatments should also be offered to patients and families by healthcare professionals, in aiding end of life treatment decision making.

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Tài liệu tham khảo

Social Welfare Bureau. The 2016 - 2025 ten-year action plan for elderly services. In: Bureau SW, ed. Macao: Social Welfare Bureau; 2016.

Australian Government. Community attitudes towards palliative care. Canberra: Department of Health and Ageing; 2003 [Available from: http://www.health.gov.au/internet/main/publishing.nsf/Content/palliativecare-pubs-comm-attitudes.htm.

Hirai K, Kudo T, Akiyama M, Matoba M, Shiozaki M, Yamaki T, et al. Public awareness, knowledge of availability, and readiness for cancer palliative care services: a population-based survey across four regions in Japan. J Palliat Med. 2011;14(8):918–22.

Westerlund C, Tishelman C, Benkel I, Fürst CJ, Molander U, et al. Public awareness of palliative care in Sweden. Scand J Public Health. 2018;46(4):478–87.

Wallace J. Public awareness of palliative care: report of the findings of the first national survey in Scotland into public knowledge and understanding of palliative care. Scottish Partnership for Palliative Care; 2003.

McIlfatrick S, Hasson F, McLaughlin D, Johnston G, Roulston A, Rutherford L, et al. Public awareness and attitudes toward palliative care in Northern Ireland. BMC Palliat Care. 2013;12(1):34.

ChungWongKiangChauLauWong RY-NEL-YNPY-KJYSY-S, et al. Knowledge, attitudes, and preferences of advance decisions, end-of-life care, and place of care and death in Hong Kong. A population-based telephone survey of 1067 adults. J Am Med Dir Assoc. 2017;18(4):367.e19-367.e27.

Benini F, Fabris M, Pace DS, Vernò V, Negro V, De Conno F, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Ann Ist Super Sanita. 2011;47:253–9.

Weafer & Associates Research. A nationwide survey of public attitudes and experiences regarding death and dying. Dublin: Weafer & Associates Research; 2004 [Available from: https://hospicefoundation.ie/wp-content/uploads/2012/04/Weafer-et-al-2004-A-nationwide-survey-of-public-attitudes-and-experiences-regarding-death-and-dying.pdf.

Shalev A, Phongtankuel V, Kozlov E, Shen MJ, Adelman RD, Reid MC. Awareness and misperceptions of hospice and palliative care: a population-based survey study. Am J Hosp Palliat Med. 2018;35(3):431–9.

Sanjo M, Miyashita M, Morita T, Hirai K, Kawa M, Ashiya T, et al. Perceptions of specialized inpatient palliative care: a population-based survey in Japan. J Pain Symptom Manage. 2008;35(3):275–82.

Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.

The Federation of Medical Societies of Hong Kong. Survey on care for the advanced diseases. 2016 [Available from: https://www.fmshk.org/fmshk.html?id=737.

Xie Y, Xu Y, Yang S, Yan J, Jin XQ, Liu C. Investigation of the awareness of and demand for hospice care and attitudes towards life-sustaining treatment at the end of life among community residents in Hangzhou. BMC Palliat Care. 2020;19(1):1–9.

The University of Hong Kong. Community-wide survey on end-of-life care in Hong Kong 2016. Hong Kong; 2016.

Ho SW, Sanders GF. Preferences on end-of-life decisions among older Chinese in Macau. J Transcult Nurs. 2015;26(2):157–63.

Documentation and Information Centre of the Statistics and Census Service. Yearbook of statistics 2019. In: Service DaICotSaC, ed. Macao: Printing Bureau; 2020.

Charan J, Biswas T. How to calculate sample size for different study designs in medical research? Indian J Psychol Med. 2013;35(2):121.

Pourhoseingholi MA, Vahedi M, Rahimzadeh M. Sample size calculation in medical studies. Gastroenterol Hepatol Bed Bench. 2013;6(1):14.

Hsu C-P, Chen H-W, Lee S-Y, Tsou M-T. Knowledge and attitude toward hospice palliative care among community-dwelling aged Taiwanese—analysis of related factors. Int J Gerontol. 2012;6(2):105–11.

Koffman J, Burke G, Dias A, Raval B, Byrne J, Gonzales J, et al. Demographic factors and awareness of palliative care and related services. Palliat Med. 2007;21(2):145–53.

Yamagishi A, Morita T, Miyashita M, Akizuki N, Kizawa Y, Shirahige Y, et al. Palliative care in Japan: current status and a nationwide challenge to improve palliative care by the cancer control act and the outreach palliative care trial of integrated regional model (OPTIM) study. Am J Hosp Palliat Med. 2008;25(5):412–8.

Zhu T, Zhang J, Shi Y, Yi J, Zhang Q, Zhao Y, Gao Q, Wang Z, Li J, Liu X, Liu D. Awareness and attitudes toward advance care planning among community-dwelling older adults in China: a mixed-methods study. Am J Hosp Palliat Care. 2020:1049909120905255.

TEI Unit. The 2015 quality of death index: ranking palliative care across the world. London: The Economist Intelligence Unit; 2015. p. 15.

Chiu T-Y, Hu W-Y, Huang H-L, Yao C-A, Chen C-Y. Prevailing ethical dilemmas in terminal care for patients with cancer in Taiwan. J Clin Oncol. 2009;27(24):3964–8.

Huang H-L, Yao C-A, Hu W-Y, Cheng S-Y, Hwang S-J, Chen C-D, et al. Prevailing ethical dilemmas encountered by physicians in terminal cancer care changed after the enactment of the natural death act: 15 years’ follow-up survey. J Pain Symptom Manage. 2018;55(3):843–50.

Seymour J, Payne S, Chapman A, Holloway M. Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Sociol Health Illn. 2007;29(6):872–90.

Kwok T, Twinn S, Yan E. The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. J Adv Nurs. 2007;58(3):256–62.

Yun YH, Lee MK, Chang YJ, You CH, Kim S, Choi JS, et al. The life-sustaining treatments among cancer patients at end of life and the caregiver’s experience and perspectives. Support Care Cancer. 2010;18(2):189–96.