We investigated the impact of perception of socioeconomic burden on beliefs regarding a patient’s autonomy in end-of-life (EOL) decision making. We also sought to identify the characteristics of individuals who advocate patient autonomy and their attitudes toward other EOL issues. A total of 1055 individuals from the Korean general population were interviewed through a telephone survey using a structured questionnaire that was designed to investigate public attitudes toward various EOL issues. Of 1019 individuals included in the analysis, 635 (62.3%) specified the patient and 221 (21.7%) the family, when asked who is the appropriate decision maker in terms of EOL decisions in the absence of perception of socioeconomic burden. In contrast, the numbers were 458 (44.9%) and 500 (49.1%), respectively, if substantial burden was assumed. Respondents who favoured the patient’s right to make decisions regardless of perception of socioeconomic burden numbered only 312 (30.6%) and were likely to be younger and have knowledge of hospice than who favoured family decision. Former group also favoured the disclosure of terminal illness to patients, withholding life-sustaining treatment, and preparation of advanced directives. Societal attitudes toward patient autonomy were significantly influenced by perception of socioeconomic burden. Open and balanced discussion about burden to family and adequate welfare support are thus suggested.
1 Emanuel EJ Fairclough DL Slutsman J Alpert H Baldwin D Emanuel LL . Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med1999; 341: 956–963.
2.
2 Nijboer C Tempelaar R Sanderman R Triemstra M Spruijt RJ van den Bos GA . Cancer and caregiving: the impact on the caregiver's health. Psychooncology1998; 7: 3–13.
3.
3 Schulz R Beach SR Lind B Martire LM Zdaniuk B Hirsch C . Involvement in caregiving and adjustment to death of a spouse: findings from the caregiver health effects study. JAMA2001; 285: 3123–3129.
4.
4 Grunfeld E Coyle D Whelan T Clinch J Reyno L Earle CC . Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ2004; 170: 1795–1801.
5.
5 Yun YH Rhee YS Kang IO Lee JS Bang SM Lee WS . Economic burdens and quality of life of family caregivers of cancer patients. Oncology2005; 68: 107–114.
6.
6 Emanuel EJ Fairclough DL Slutsman J Emanuel LL . Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med2000; 132: 451–459.
7.
7 Proot IM Abu-Saad HH Crebolder HF Goldsteen M Luker KA Widdershoven GA . Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci2003; 17: 113–121.
8.
8 Covinsky KE Goldman L Cook EF Oye R Desbiens N Reding D . The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA1994; 272: 1839–1844.
9.
9 McPherson CJ Wilson KG Lobchuk MM Brajtman S . Self-perceived burden to others: patient and family caregiver correlates. J Palliat Care2007; 23: 135–142.
10.
10 Karel MJ Gatz M . Factors influencing life-sustaining treatment decisions in a community sample of families. Psychol Aging1996; 11: 226–234.
11.
11 Ganzini L Harvath TA Jackson A Goy ER Miller LL Delorit MA . Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med2002; 347: 582–588.
12.
12 Kwok T Twinn S Yan E . The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. J Adv Nurs2007; 58: 256–262.
13.
13 Borum ML Lynn J Zhong Z . The effects of patient race on outcomes in seriously ill patients in SUPPORT: an overview of economic impact, medical intervention, and end-of-life decisions. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Am Geriatr Soc2000; 48: S194–S198.
14.
14 Higginson IJ Costantini M . Communication in end-of-life cancer care: a comparison of team assessments in three European countries. J Clin Oncol2002; 20: 3674–3682.
15.
15 Stiggelbout AM Molewijk AC Otten W Timmermans DR van Bockel JH Kievit J . Ideals of patient autonomy in clinical decision making: a study on the development of a scale to assess patients' and physicians' views. J Med Ethics2004; 30: 268–274.
16.
16 Hilden HM Honkasalo ML Louhiala P . Finnish doctors and the realisation of patient autonomy in the context of end of life decision making. J Med Ethics2006; 32: 316–320.
17.
17 Beauchamp TL Childress JF . Principles of biomedical ethics.New York, Oxford: Oxford University Press; 1994.
18.
18 Yun YH Lee CG Kim SY Lee SW Heo DS Kim JS . The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol2004; 22: 307–314.
19.
19 Sheu SJ Huang SH Tang FI Huang SL . Ethical decision making on truth telling in terminal cancer: medical students' choices between patient autonomy and family paternalism. Med Educ2006; 40: 590–598.
20.
20 Al-Mobeireek A . Ethics in decision making and patient autonomy. Chest2001; 120: 688.
21.
21 Matsumura S Bito S Liu H Kahn K Fukuhara S Kagawa-Singer M . Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese. J Gen Intern Med2002; 17: 531–539.
22.
22 Feldman MD Zhang J Cummings SR . Chinese and U.S. internists adhere to different ethical standards. J Gen Intern Med1999; 14: 469–473.
23.
23 Yun YH Rhee YS Nam SY Chae YM Heo DS Lee SW . Public attitudes toward dying with dignity and hospice·palliative care. Korean J Hosp Palliat Care2004; 7: 17–28.
24.
24 Miyashita M Sanjo M Morita T Hirai K Uchitomi Y . Good death in cancer care: a nationwide quantitative study. Ann Oncol2007; 18: 1090–1097.
25.
25 Bowman KW Singer PA . Chinese seniors' perspectives on end-of-life decisions. Soc Sci Med2001; 53: 455–464.
26.
26 Heyland DK Dodek P Rocker G Groll D Gafni A Pichora D . What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ2006; 174: 627–633.
27.
27 Steinhauser KE Christakis NA Clipp EC McNeilly M McIntyre L Tulsky JA . Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA2000; 284: 2476–2482.
28.
28 Fried TR Bradley EH . What matters to seriously ill older persons making end-of-life treatment decisions? A qualitative study. J Palliat Med2003; 6: 237–244.
29.
29 Braun UK Beyth RJ Ford ME McCullough LB . Defining limits in care of terminally ill patients. BMJ2007; 334: 239–241.
30.
30 Qidwai W . Patient autonomy: reflections from a developing country. Am Fam Physician2005; 71: 1261.
31.
31 Bruera E Neumann CM Mazzocato C Stiefel F Sala R . Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients. Palliat Med2000; 14: 287–298.
32.
32 Gochman DS Bonham GS . The social structure of the hospice decision. Hosp J1990; 6: 15–36.
33.
33 Slomka J . The negotiation of death: clinical decision making at the end of life. Soc Sci Med1992; 35: 251–259.
34.
34 Winzelberg GS Hanson LC Tulsky JA . Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families. J Am Geriatr Soc2005; 53: 1046–1050.
35.
35 Singer PA Martin DK Kelner M . Quality end-of-life care: patients' perspectives. JAMA1999; 281: 163–168.
36.
36 Teno JM Casey VA Welch LC Edgman-Levitan S . Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage2001; 22: 738–751.
37.
37 Haley WE Allen RS Raynold S Chen H . burton, A, Gallagher-Thomson, D. Family issues in end-of-life decision making and end-of-life care. Am Behav Sci2002; 46: 284–298.
38.
38 Deber RB . Physicians in health care management: 8. The patient-physician partnership: decision making, problem solving and the desire to participate. CMAJ1994; 151: 423–427.
39.
39 Ende J Kazis L Ash A Moskowitz MA . Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med1989; 4: 23–30.
40.
40 Stiggelbout AM Kiebert GM . A role for the sick role. Patient preferences regarding information and participation in clinical decision-making. CMAJ1997; 157: 383–389.
41.
41 Duke G Thompson S Hastie M . Factors influencing completion of advanced directives in hospitalized patients. Int J Palliat Nurs2007; 13: 39–43.
42.
42 Hardwig J . What about the family? Hastings Cent Rep1990; 20: 5–10.
43.
43 Mappes TA Zembaty JS . Patient choices, family interests, and physician obligations. Kennedy Inst Ethics J1994; 4: 27–46.
44.
44 Hardwig J . Families and futility: forestalling demands for futile treatment. J Clin Ethics2005; 16: 335–344.
