Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient

Palliative Medicine

Volumn 26, Issue 3, 2012, Pages 222-231

  Mo, Ha Na ^a   Shin, Dong Wook ^b   Woo, Jae Ha ^c   Choi, Jin Young ^a   Kang, Jina ^a   Baik, Young Ji ^a   Huh, Yu Rae ^d   Won, Joo Hee ^e   Park, Myung Hee ^f   Cho, Sang Hee ^g  

^a National Cancer Center   (South Korea)

^b Seoul National University Hospital   (South Korea)

^c CLAREMONT GRADUATE UNIVERSITY   (United States)

^d Bobath Memorial Hospital   (South Korea)

^e Saemmul Hospice Hospital   (South Korea)

^f The Catholic University of Korea   (South Korea)

^g Chonnam National University   (South Korea)

Author keywords

Decision making; end of life; Korea; patient autonomy; quality of life

Indexed keywords

ADULT; ARTICLE; AWARENESS; BRAIN CANCER; BREAST CANCER; CANCER PALLIATIVE THERAPY; CANCER PATIENT; CROSS-SECTIONAL STUDY; DEATH; DECISION MAKING; DIGESTIVE SYSTEM CANCER; FEMALE; GOOD DEATH INVENTORY; HEAD AND NECK CANCER; HUMAN; KOREA; LUNG CANCER; MAJOR CLINICAL STUDY; MALE; PALLIATIVE THERAPY; PATIENT AUTONOMY; PATIENT DECISION MAKING; QUALITY OF DEATH; QUALITY OF LIFE; QUESTIONNAIRE; RELIGION; SPINAL CORD CANCER; TERMINAL DISEASE; UTERINE CERVIX CANCER; VALIDATION PROCESS;

AGED; ATTITUDE TO DEATH; CROSS-SECTIONAL STUDIES; CULTURE; DECISION MAKING; DEMOCRATIC PEOPLE'S REPUBLIC OF KOREA; ETHICS, MEDICAL; FEMALE; HUMANS; MALE; MIDDLE AGED; NEOPLASMS; PERSONAL AUTONOMY; QUALITY OF LIFE; TERMINAL CARE; TRUTH DISCLOSURE;

EID: 84863337558     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216311405089     Document Type: Article

References (55)

1. Mystakidou K, Parpa E, Tsilila E, Katsouda E and Vlahos L. Cancer information disclosure in different cultural contexts. Support Care Canc 2004; 12: 147-154. (Pubitemid 38374674)
2. Kelly WD and Friesen SR. Do cancer patients want to be told. Surgery 1950; 27: 822-826.
3. Lind SE, DelVecchio Good MJ, Seidel S, Csordas T and Good BJ. Telling the diagnosis of cancer. J Clin Oncol 1989; 7: 583-589. (Pubitemid 19126793)
4. Andersen MR, Bowen DJ, Morea J, Stein KD and Baker F. Involvement in decision-making and breast cancer survivor quality of life. Health Psychol 2009; 28: 29-37.
5. Andersen MR and Urban N. Involvement in decisionmaking and breast cancer survivor quality of life. Ann Behav Med 1999; 21: 201-209.
6. Perocchia RS, Hodorowski JK, Williams LA, et al. Patient-centered communication in cancer care: the role of the NCI's cancer information service. J Cancer Educ 2011; 26: 36-43.
7. Chater K and Tsai C-T. Palliative care in a multicultural society: a challenge for western ethics. Aust J Adv Nurs 2008; 26: 95-100.
8. Elwyn TD, Fetters M, Gorenflo D and Tsuda T. Cancer disclosure in Japan: historical comparisons, current practices. Soc Sci Med 1998; 46: 1151-1163. (Pubitemid 28149532)
9. Sheu S, Huang S, Tang F and Huang S. Ethical decision making on truth telling in terminal cancer: medical students' choices between patient autonomy and family paternalism. Med Educ 2006; 40: 590-598. (Pubitemid 43742834)
10. Yun Y, Lee C, Kim S, et al. The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol 2004; 22: 307-314. (Pubitemid 41095096)
11. Pang M. Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Br Med J 1999; 25: 247-253. (Pubitemid 29273776)
12. Ruhnke G, Wilson S, Akamatsu T, et al. Ethical decision making and patient autonomy. Chest 2000; 118: 1172-1182.
13. Chiu T, Hu W, Cheng S and Chen C. Ethical dilemmas in palliative care: a study in Taiwan. Br Med J 2000; 26: 353-357.
14. Konishi E and Davis A. Japanese nurses' perceptions about disclosure of information at the patients' end of life. Nurs Health Sci 1999; 1: 179-187.
15. Wang SY, Chen CH, Chen YS and Huang HL. The attitude toward truth telling of cancer in Taiwan. Journal Psychosom Res 2004; 57: 53-58. (Pubitemid 38901095)
16. Harle I, Johnston J, Mackay J, Mayer C, Russell S and Zwaai C. Advance care planning with cancer patients. Ontario, Canada: Cancer Care Ontario, 2008.
17. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L and Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. J Am Med Assoc 2000; 284: 2476-2482.
18. Patrick DL, Engelberg RA and Curtis JR. Evaluating the quality of dying and death. J Pain Symptom Manage 2001; 22: 717-726. (Pubitemid 32780510)
19. Teno JM, Clarridge B, Casey V, Edgman-Levitan S and Fowler J. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage 2001; 22: 752-758. (Pubitemid 32776586)
20. Steinhauser K, Bosworth H, Clipp E, et al. Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 2002; 5: 829-841. (Pubitemid 36055769)
21. Hirai K, Miyashita M, Morita T, Sanjo M and Uchitomi Y. Good death in Japanese cancer care: a qualitative study. J Pain Symptom Manage 2006; 31: 140-147. (Pubitemid 43243667)
22. Miyashita M, Morita T, Sato K, Hirai K, Shima Y and Uchitomi Y. Good death inventory: a measure for evaluating good death from the bereaved family member's perspective. J Pain Symptom Manage 2008; 35: 486-498. (Pubitemid 351601994)
23. Yun Y, Rhee Y, Nam S, et al. Public attitudes toward dying with dignity and hospice palliative care. Korean J Hosp Palliat Care 2004; 7: 17-28.
24. Kwon YC, Shin DW, Lee JH, et al. Impact of perception of socioeconomic burden on advocacy for patient autonomy in end-of-life decision making: a study of societal attitudes. Palliat Med 2009; 23: 87-94.
25. Leung KK, Chiu TY and Chen CY. The influence of awareness of terminal condition on spiritual well-being in terminal cancer patients. J Pain Symptom Manage 2006; 31: 449-456.
26. Yun YH, Kwon YC, Lee MK, et al. Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol 2010; 28: 1950-1957.
27. Shin DW, Choi JE, Kim JH, et al. What is the best practical survey methods for the comparative assessment of palliative care services: results from a national quality assessment project in Korea. J Pain Symptom Manage (In press).
28. Blackhall LJ, Murphy ST, Frank G, Michel V and Azen S. Ethnicity and attitudes toward patient autonomy. J Am Med Assoc 1995; 274: 820-825.
29. Montazeri A, Tavoli A, Mohagheghi MA, Roshan R and Tavoli Z. Disclosure of cancer diagnosis and quality of life in cancer patients: should it be the same everywhere? BMC Canc 2009; 9: 39.
30. Centeno-Cortes C and Nunez-Olarte JM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients' responses. Palliat Med 1994; 8: 39-44. (Pubitemid 24044501)
31. Pieterse AH, Baas-Thijssen MC, Marijnen CA and Stiggelbout AM. Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration. Br J Canc 2008; 99: 875-882.
32. Groenvold M, Petersen MA, Aaronson NK, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Canc 2006; 42: 55-64. (Pubitemid 41818953)
33. Shin DW, Choi JE, Miyashita M, et al. Cross-cultural application of the Korean version of the European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care (EORTC QLQ-C15-PAL). J Pain Symptom Manage 2011; 41: 478-484.
34. Miyashita M, Morita T and Hirai K. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol 2008; 26: 3845-3852.
35. Miyashita M, Morita T, Tsuneto S, Sato K and Shima Y. The Japan HOspice and Palliative Care Evaluation study (J-HOPE study): study design and characteristics of participating institutions. Am J Hospice Palliat Care 2008; 25: 223-232.
36. Shin DW, Choi JY, Kim JH, Joo JS, Baik YJ and Mo HN. Development of standard service model and quality evaluation system for palliative care organizations (National R & D program for cancer control, No. 0920350). Goyang: National Cancer Center, 2010.
37. Beauchamp TL and Childress JF. Principles of biomedical ethics. New York City: Oxford University Press, 2001.
38. Pellegrino ED. Some things ought never be done: moral absolutes in clinical ethics. Theor Med Bioeth 2005; 26: 469-486. (Pubitemid 41684730)
39. Westra AE, Willems DL and Smit BJ. Communicating with Muslim parents: 'the four principles' are not as culturally neutral as suggested. Eur J Pediatr 2009; 168: 1383-1387.
40. Lo B. Resolving ethical dilemmas: a guide for clinicians, 4th ed. Baltimore, MD: Lippincott Williams & Wilkins, 2009.
41. US Census Bureau. Minority population tops 100 million. Washington, DC: US Census Bureau, 2007.
42. European Commission. 'Foreigners living in the EU are diverse and largely younger than the nationals of the EU Member states', http://ec.europa.eu/ eurostat (2010. accessed 1 December 2010).
43. Matsumura S, Bito S, Liu H, et al. Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese. J Gen Int Med 2002; 17: 531-539. (Pubitemid 34993554)
44. Phipps E, True G, Harris D, et al. Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol 2003; 21: 549-554. (Pubitemid 46606486)
45. Seo M, Tamura K, Shijo H, Morioka E, Ikegame C and Hirasako K. Telling the diagnosis to cancer patients in Japan: attitude and perception of patients, physicians and nurses. Palliat Med 2000; 14: 105-110. (Pubitemid 30198019)
46. Fan R. Reconsidering surrogate decision making: Aristotelianism and Confucianism on ideal human relations. Philos East W 2002; 52: 346-372.
47. Ishiwata R and Sakai A. The physician-patient relationship and medical ethics in Japan. Camb Q Healthc Ethics 1994; 3: 60-66.
48. Voltz R, Akabayashi A, Reese C, Ohi G and Sass H. End-of-life decisions and advance directives in palliative care a cross-cultural survey of patients and health-care professionals. J Pain Symptom Manage 1998; 16: 153-162. (Pubitemid 28429063)
49. Sekimoto M, Asai A, Ohnishi M, et al. Patients' preferences for involvement in treatment decision making in Japan. BMC Fam Pract 2004; 5: 1.
50. Fallowfield L, Jenkins V and Beveridge H. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002; 16: 297-303.
51. Miyashita M, Sanjo M, Morita T, Hirai K and Uchitomi Y. Good death in cancer care: a nationwide quantitative study. Ann Oncol 2007; 18: 1090-1097. (Pubitemid 47053778)
52. Cheng SY, Hu W, Liu W, Yao C, Chen C and Chiu T. Good death study of elderly patients with terminal cancer in Taiwan. Palliat Med 2008; 22: 626-632.
53. Watanabe Y, Takahashi M and Kai I. Japanese cancer patient participation in and satisfaction with treatment-related decision-making: a qualitative study. BMC Publ Health 2008; 8: 77.
54. Baik YJ, Shin DW, Choi JY, et al. Late referral to palliative care services in Korea. J Pain Symptom Manage (online published) doi:10.1016/j. jpainsymman.2010.06.019.
55. WHO. National cancer control programmes: policies and managerial guidelines. Geneva: World Health Organization, 2002.