Purpose: We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea.
Methods: A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version).
Results: A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the ‘physical and psychological comfort’ (4.99 versus 5.61, p = 0.03), ‘environmental comfort’ (5.51 versus 6.04, p = 0.08), and ‘emotional functioning’ (55.70 versus 71.01, p = 0.06).
Conclusion: in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual’s ability, preference, need, and culture.
MystakidouKParpaETsililaEKatsoudaEVlahosL. Cancer information disclosure in different cultural contexts. Support Care Canc2004; 12: 147–154.
2.
KellyWDFriesenSR. Do cancer patients want to be told. Surgery1950; 27: 822–826.
3.
LindSEDelVecchio GoodMJSeidelSCsordasTGoodBJ. Telling the diagnosis of cancer. J Clin Oncol1989; 7: 583–589.
4.
AndersenMRBowenDJMoreaJSteinKDBakerF. Involvement in decision-making and breast cancer survivor quality of life. Health Psychol2009; 28: 29–37.
5.
AndersenMRUrbanN. Involvement in decision-making and breast cancer survivor quality of life. Ann Behav Med1999; 21: 201–209.
6.
PerocchiaRSHodorowskiJKWilliamsLA. Patient-centered communication in cancer care: the role of the NCI’s cancer information service. J Cancer Educ2011; 26: 36–43.
7.
ChaterKTsaiC-T. Palliative care in a multicultural society: a challenge for western ethics. Aust J Adv Nurs2008; 26: 95–100.
8.
ElwynTDFettersMGorenfloDTsudaT. Cancer disclosure in Japan: historical comparisons, current practices. Soc Sci Med1998; 46: 1151–1163.
9.
SheuSHuangSTangFHuangS. Ethical decision making on truth telling in terminal cancer: medical students’ choices between patient autonomy and family paternalism. Med Educ2006; 40: 590–598.
10.
YunYLeeCKimS. The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol2004; 22: 307–314.
11.
PangM. Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Br Med J1999; 25: 247–253.
12.
RuhnkeGWilsonSAkamatsuT. Ethical decision making and patient autonomy. Chest2000; 118: 1172–1182.
13.
ChiuTHuWChengSChenC. Ethical dilemmas in palliative care: a study in Taiwan. Br Med J2000; 26: 353–357.
14.
KonishiEDavisA. Japanese nurses’ perceptions about disclosure of information at the patients’ end of life. Nurs Health Sci1999; 1: 179–187.
15.
WangSYChenCHChenYSHuangHL. The attitude toward truth telling of cancer in Taiwan. Journal Psychosom Res2004; 57: 53–58.
16.
HarleIJohnstonJMackayJMayerCRussellSZwaaiC. Advance care planning with cancer patients. Ontario, Canada: Cancer Care Ontario, 2008.
17.
SteinhauserKEChristakisNAClippECMcNeillyMMcIntyreLTulskyJA. Factors considered important at the end of life by patients, family, physicians, and other care providers. J Am Med Assoc2000; 284: 2476–2482.
18.
PatrickDLEngelbergRACurtisJR. Evaluating the quality of dying and death. J Pain Symptom Manage2001; 22: 717–726.
19.
TenoJMClarridgeBCaseyVEdgman-LevitanSFowlerJ. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain Symptom Manage2001; 22: 752–758.
20.
SteinhauserKBosworthHClippE. Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med2002; 5: 829–841.
21.
HiraiKMiyashitaMMoritaTSanjoMUchitomiY. Good death in Japanese cancer care: a qualitative study. J Pain Symptom Manage2006; 31: 140–147.
22.
MiyashitaMMoritaTSatoKHiraiKShimaYUchitomiY. Good death inventory: a measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage2008; 35: 486–498.
23.
YunYRheeYNamS. Public attitudes toward dying with dignity and hospice palliative care. Korean J Hosp Palliat Care2004; 7: 17–28.
24.
KwonYCShinDWLeeJH. Impact of perception of socioeconomic burden on advocacy for patient autonomy in end-of-life decision making: a study of societal attitudes. Palliat Med2009; 23: 87–94.
25.
LeungKKChiuTYChenCY. The influence of awareness of terminal condition on spiritual well-being in terminal cancer patients. J Pain Symptom Manage2006; 31: 449–456.
26.
YunYHKwonYCLeeMK. Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol2010; 28: 1950–1957.
27.
ShinDWChoiJEKimJH. 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.
BlackhallLJMurphySTFrankGMichelVAzenS. Ethnicity and attitudes toward patient autonomy. J Am Med Assoc1995; 274: 820–825.
29.
MontazeriATavoliAMohagheghiMARoshanRTavoliZ. Disclosure of cancer diagnosis and quality of life in cancer patients: should it be the same everywhere?BMC Canc2009;
9: 39.
30.
Centeno-CortesCNunez-OlarteJM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients’ responses. Palliat Med1994; 8: 39–44.
31.
PieterseAHBaas-ThijssenMCMarijnenCAStiggelboutAM. Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration. Br J Canc2008; 99: 875–882.
32.
GroenvoldMPetersenMAAaronsonNK. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Canc2006; 42: 55–64.
33.
ShinDWChoiJEMiyashitaM. 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 Manage2011; 41: 478–484.
34.
MiyashitaMMoritaTHiraiK. Evaluation of end-of-life cancer care from the perspective of bereaved family members: the Japanese experience. J Clin Oncol2008; 26: 3845–3852.
35.
MiyashitaMMoritaTTsunetoSSatoKShimaY. The Japan HOspice and Palliative Care Evaluation study (J-HOPE study): study design and characteristics of participating institutions. Am J Hospice Palliat Care2008; 25: 223–232.
36.
ShinDWChoiJYKimJHJooJSBaikYJMoHN. 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.
BeauchampTLChildressJF. Principles of biomedical ethics. New York City: Oxford University Press, 2001.
38.
PellegrinoED. Some things ought never be done: moral absolutes in clinical ethics. Theor Med Bioeth2005; 26: 469–486.
39.
WestraAEWillemsDLSmitBJ. Communicating with Muslim parents: ‘the four principles’ are not as culturally neutral as suggested. Eur J Pediatr2009; 168: 1383–1387.
40.
LoB. 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.
MatsumuraSBitoSLiuH. Acculturation of attitudes toward end-of-life care: a cross-cultural survey of Japanese Americans and Japanese. J Gen Int Med2002; 17: 531–539.
44.
PhippsETrueGHarrisD. Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol2003; 21: 549–554.
45.
SeoMTamuraKShijoHMoriokaEIkegameCHirasakoK. Telling the diagnosis to cancer patients in Japan: attitude and perception of patients, physicians and nurses. Palliat Med2000; 14: 105–110.
46.
FanR. Reconsidering surrogate decision making: Aristotelianism and Confucianism on ideal human relations. Philos East W2002; 52: 346–372.
47.
IshiwataRSakaiA. The physician-patient relationship and medical ethics in Japan. Camb Q Healthc Ethics1994; 3: 60–66.
48.
VoltzRAkabayashiAReeseCOhiGSassH. End-of-life decisions and advance directives in palliative care a cross-cultural survey of patients and health-care professionals. J Pain Symptom Manage1998; 16: 153–162.
49.
SekimotoMAsaiAOhnishiM. Patients’ preferences for involvement in treatment decision making in Japan. BMC Fam Pract2004; 5: 1.
50.
FallowfieldLJenkinsVBeveridgeH. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med2002; 16: 297–303.
51.
MiyashitaMSanjoMMoritaTHiraiKUchitomiY. Good death in cancer care: a nationwide quantitative study. Ann Oncol2007; 18: 1090–1097.
52.
ChengSYHuWLiuWYaoCChenCChiuT. Good death study of elderly patients with terminal cancer in Taiwan. Palliat Med2008; 22: 626–632.
53.
WatanabeYTakahashiMKaiI. Japanese cancer patient participation in and satisfaction with treatment-related decision-making: a qualitative study. BMC Publ Health2008; 8: 77.
54.
BaikYJShinDWChoiJY. Late referral to palliative care services in Korea. J Pain Symptom Manage (online published) doi:10.1016/j.jpainsymman.2010.06.01910.1016/j.jpainsymman.2010.06.019.
55.
WHO. National cancer control programmes: policies and managerial guidelines. Geneva: World Health Organization, 2002.
