Waleed Zafar1, Haroon Hafeez2, Arif Jamshed3, Mazhar Ali Shah3, Ainul Quader4, M Aasim Yusuf2. 1. Department of Cancer Registry and Clinical Data Management, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan waleedz@skm.org.pk. 2. Department of Internal Medicine, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan. 3. Department of Radiation Oncology, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan. 4. Department of Cancer Registry and Clinical Data Management, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
Abstract
BACKGROUND: Cancer patients' preferences regarding disclosure of prognosis and end-of-life care remain under-reported from low- and middle-income countries where cancer poses an increasing demand on scarce healthcare resources. A better knowledge of these preferences can help in achievement of shared treatment goals. AIM: To survey preferences of adult cancer patients regarding disclosure of prognosis and end-of-life care DESIGN: A multidimensional questionnaire was developed to survey consecutively sampled patients. A fifth of the participants completed a repeat survey 3 months later. SETTING/PARTICIPANTS: Adult patients at a specialist cancer center in Pakistan. RESULTS: In total, 520 patients were surveyed initially (participation rate 98.6%) and 100 completed the repeat survey. Three in five respondents wanted a healthcare provider to give them detailed information about their prognosis and life expectancy. Those who wanted information withheld were significantly more likely to be female, to have a lower socioeconomic status, or to have lung cancer. Only two in five patients agreed that they wanted to die at home and more than 90% wanted all possible care till end-of-life. Yet, a little over half also agreed that they did not wish to be placed on a ventilator. In rank ordering preferences about end-of-life, respondents ranked "religious wellbeing" as the highest and "avoiding inappropriate prolongation of dying" as the lowest of six options. CONCLUSION: A majority of adult cancer patients surveyed in this study wanted a truthful disclosure about their disease prognosis and expressed a preference for hospital-based care at end-of-life. Healthcare providers should find ways to tailor prognostic information to patients' expressed information needs.
BACKGROUND:Cancerpatients' preferences regarding disclosure of prognosis and end-of-life care remain under-reported from low- and middle-income countries where cancer poses an increasing demand on scarce healthcare resources. A better knowledge of these preferences can help in achievement of shared treatment goals. AIM: To survey preferences of adult cancerpatients regarding disclosure of prognosis and end-of-life care DESIGN: A multidimensional questionnaire was developed to survey consecutively sampled patients. A fifth of the participants completed a repeat survey 3 months later. SETTING/PARTICIPANTS: Adult patients at a specialist cancer center in Pakistan. RESULTS: In total, 520 patients were surveyed initially (participation rate 98.6%) and 100 completed the repeat survey. Three in five respondents wanted a healthcare provider to give them detailed information about their prognosis and life expectancy. Those who wanted information withheld were significantly more likely to be female, to have a lower socioeconomic status, or to have lung cancer. Only two in five patients agreed that they wanted to die at home and more than 90% wanted all possible care till end-of-life. Yet, a little over half also agreed that they did not wish to be placed on a ventilator. In rank ordering preferences about end-of-life, respondents ranked "religious wellbeing" as the highest and "avoiding inappropriate prolongation of dying" as the lowest of six options. CONCLUSION: A majority of adult cancerpatients surveyed in this study wanted a truthful disclosure about their disease prognosis and expressed a preference for hospital-based care at end-of-life. Healthcare providers should find ways to tailor prognostic information to patients' expressed information needs.
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