Family Satisfaction With Perception of and Barriers to Terminal Care in Japan

Chie Ogasawara

Yasuko Kume

Masayo Andou

ONF 2003, 30(5), E100-E105. DOI: 10.1188/03.ONF.E100-E105

Purpose/Objectives: To examine how families of patients with cancer perceive and are satisfied with terminal care given in a university hospital and to identify barriers to the best care for patients and proper support for their families.

Design: Quantitative, descriptive.

Setting: A Japanese national university hospital.

Sample: Convenience sample of 73 family members of deceased patients with cancer (response rate was 55%).

Methods: Completion of a questionnaire comprised of 23 items, including multiple-choice and open-ended questions.

Main Research Variables: Satisfaction with terminal care, misunderstanding of narcotics use, recognition of disease signs and symptoms, and expectations for terminal care.

Findings: Ninety percent of respondents were satisfied with nursing care. Eighty percent were satisfied with the information they received at admission, 70% were satisfied at the critical phase, and 63% were satisfied at the end of life. The main expected types of desirable terminal care were pain management and spiritual care. The bereaved had difficulty dealing with patients' pain, dyspnea, and appetite loss. Forty-four patients were treated with narcotics. Fifty-seven percent of the family members of these patients found pain to be the most difficult symptom to deal with. Fifty-eight percent of the respondents believed that if narcotics were used, patients would soon die.

Conclusions: Terminal cancer care given in Japanese university hospitals does not appear to be adequate in terms of patients' and families' quality of life. The findings indicate that insufficient current information is given throughout the terminal stage of cancer and patients and their families misunderstand the use of narcotics.

Implications for Nursing: Oncology nurses need to consider different cultural backgrounds when offering specific care to patients with terminal cancer. Patients and their families must be educated about the efficacy of narcotics in the care of terminally ill patients with cancer.

Jump to a section

    References

    Aoki, Y., Nakagawa, K., Hasegawa, K., Tago, M., Baba, N., Toyoda, K., et al. (1997). Significance of informed consent and truth-telling for quality of life in terminal cancer patients. Radiation Medicine, 15, 133-135.

    Bookbinder, M., & Ogasawara, C. (1997). Pain knowledge, attitude, and barriers: A cross-cultural study [Abstract 114]. Oncology Nursing Forum, 24, 314.

    Crow, K., Matheson, L., & Steed, A. (2000). Informed consent and truth-telling: Cultural directions for healthcare providers. Journal of Nursing Administration, 30, 148-152.

    Ferrell, B.R., Grant, M., Chan, J., Ann, C., & Ferrell, B.A. (1995). The impact of cancer pain education on family caregivers of elderly patients. Oncology Nursing Forum, 22, 1211-1218.

    International Narcotics Control Board. (2001). Statistical information on narcotic drugs: Part four. Retrieved June 30, 2003, from http://www.incb.org:80/e/tr/nar/2000/narcotics_2000_part4.pdf

    Katoh, M., Yoshida, H., Sugiyama, S., Yamada, W., Kuramoto, J., Yuhara, K., et al. (1995). Nihonjin no ooku ga mukaeteiru shuumatsuki iryou no jittai ni tsulte [Survey of terminal care in Japan]. Journal of Health and Welfare Statistics, 42(10), 25-36.

    Knappe, E., & DelCampo, R. (1995). Developing family care plans: A systems perspective for helping hospice families. American Journal of Hospice and Palliative Care, 12(6), 39-47.

    Kume, Y., Ogasawara, C., Baba, T., Yamanaka, T., & Andou, M. (1999). Gankanja no toutsuu kanri no bougai inshi ni taisuru kangofu to ishi no ninshiki to chishiki taido kanshindo [Nurse and physician's recognition of barriers for the management of cancer pain and knowledge, attitude and concern]. Nursing Journal of Osaka University, 5(1), 8-16.

    Lin, C. (2001). Congruity of cancer pain perceptions between Taiwanese patients and family caregivers: Relationship to patients' concerns about reporting pain and using analgesics. Journal of Pain and Symptom Management, 21, 18-26.

    Lobchuk, M., & Stymeist, D. (1999). Symptoms as meaningful "family culture" symbols in palliative care. Journal of Palliative Care, 15(4), 24-31.

    Ohmoto, K., Ooumi, Y., Simabara, M., & Miyake, I. (1996). Daigaku byouin no nyuinkanja to kazoku no ishiki chousa [Survey of informed consent of patients and families in a university hospital]. Japanese Journal of Clinical and Experimental Medicine, 73(8), 98-105.

    Redinbaugh, E., Baum, A., DeMoss, C., Fello, M., & Arnold, R. (2002). Factors associated with the accuracy of family caregiver estimates of patient pain. Journal of Pain and Symptom Management, 23, 31-38.

    Ruhnke, G., Wilson, S., Akamatsu, T., Kinoue, T., Takashima, Y., Goldstein, M.K., et al. (2000). Ethical decision making and patient autonomy: A comparison of physicians and patients in Japan and the United States. Chest, 118, 1172-1182.

    Seo, Y. (1997). A preliminary study on the emotional distress of patients with terminal-stage cancer: A questionnaire survey of 1,380 bereaved families over a 12-year period. Japanese Journal of Clinical Oncology, 27(2), 80-83.

    Statistics and Information Department, Minister's Secretariat, Ministry of Health, Labor, and Welfare. (1999). Heisei 11 nen jinkou doutai toukei [Vital statistics of Japan]. Health and Welfare Statistics Association, 3, 454-455.

    Surbone, A. (1997). Information, truth, and communication, for an interpretation of truth-telling practices throughout the world. Annals of the New York Academy of Sciences, 809, 7-16.

    Tsunoda, S., Matsumoto, A., Kawamura, K., Kawamura, K., Suzuki, M., Ezura, M., et al. (1997). Shiboukanja no kazoku kara mita shuumatsuki iryou: Izoku anke-to chousa yori [Impressions of terminal care from the viewpoint of the bereaved]. Terminal Care, 7(1), 84-91.

    Uchitomi, Y., & Yamawaki, S. (1997). Truth-telling practice in cancer care in Japan. Annals of the New York Academy of Sciences, 809, 290-299.

    Voltz, R., Akabayashi, A., Reese, C., Ohi, G., & Sass, H. (1998). End-of-life decisions and advance directives in palliative care: A cross-cultural survey of patients and health-care professionals. Journal of Pain and Symptom Management, 16, 153-162.

    Watanabe, T. (1998). Gankanja eno byoumei kokuchi to kanwakea tono kanren: Gan senmonbyouin to ippanbyouin tono hikaku [Truth-telling to cancer patients in relation to palliative care program implementation: A comparative study in a cancer hospital and in general hospitals in Japan]. Japanese Journal of Cancer Care, 3, 255-260.

    Wyatt, G.K., Friedman, L., Given, C.W., & Given, B.A. (1999). A profile of bereaved caregivers following provision of terminal care. Journal of Palliative Care, 15, 13-25.

    Yagihashi, M., Hamaya, T., Ozawa, K., Sakata, N., & Satoh, T. (1995). A trial of palliative care for cancer patients in the university hospital: Joint rounds of psychiatrists and anesthesiologists. Japanese Journal of Clinical Psychiatry, 24, 1211-1219.

    Yamamuro, M. (1997). Gankanja no itami no chiryou [Treatment for pain with cancer patient]. Tokyo: Chugaiigakusha.

    Yeager, K.A., Miaskowski, C., Dibble, S.L., & Wallhagen, M. (1995). Differences in pain knowledge and perception of the pain experiences between outpatients with cancer and their family caregivers. Oncology Nursing Forum, 22, 1235-1241.

    Yokota, T., Tokashiki, A., & Ishizu, H. (1995). Shumatsuki iryou ni okeru kanja oyobi kazoku no genjou to kenkou shougai ni tsuite no kentou [A study of the present situation for terminal care of patients and their families' health problems]. Shinshin-igaku, 35, 511-517.