title: Preferences regarding disclosure of prognosis and end-of-life care: A survey of cancer patients with advanced disease in a lower-middle-income country.
abstract: 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.
  
  
  
  To survey preferences of adult cancer patients regarding disclosure of prognosis and end-of-life care
  
  
  
  A multidimensional questionnaire was developed to survey consecutively sampled patients. A fifth of the participants completed a repeat survey 3 months later.
  
  
  
  Adult patients at a specialist cancer center in Pakistan.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Cancer Registry and Clinical Data Management, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan waleedz@skm.org.pk.
authors.forename: Waleed
authors.initials: W
authors.lastname: Zafar
authors.affiliation: Department of Internal Medicine, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
authors.forename: Haroon
authors.initials: H
authors.lastname: Hafeez
authors.affiliation: Department of Radiation Oncology, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
authors.forename: Arif
authors.initials: A
authors.lastname: Jamshed
authors.affiliation: Department of Radiation Oncology, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
authors.forename: Mazhar Ali
authors.initials: MA
authors.lastname: Shah
authors.affiliation: Department of Cancer Registry and Clinical Data Management, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
authors.forename: Ainul
authors.initials: A
authors.lastname: Quader
authors.affiliation: Department of Internal Medicine, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.
authors.forename: M Aasim
authors.initials: MA
authors.lastname: Yusuf
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003906:Developing Countries; D005260:Female; D006801:Humans; D008017:Life Expectancy; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010154:Pakistan; D057240:Patient Preference / Q000523:psychology*; D010817:Physician-Patient Relations; D011203:Poverty; D011379:Prognosis; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*; D014342:Truth Disclosure; D055815:Young Adult
keywords: Palliative care; developing countries; end-of-life care; health care surveys; neoplasm; patient preferences; prognosis; terminal care; truth disclosure