Journal of Pain and Symptom Management
Volume 40, Issue 2 , Pages 224-234 , August 2010

Self-Perceived Burden in Terminally Ill Cancer Patients: A Categorization of Care Strategies Based on Bereaved Family Members' Perspectives

  • Terukazu Akazawa, MSW

      Affiliations

    • Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan
    • Hamamatsu Cancer Support Center, Seirei Mikatahara General Hospital, Shizuoka, Japan
    • ,
  • Tatsuo Akechi, MD, PhD

      Affiliations

    • Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan
    • Corresponding Author InformationAddress correspondence to: Tatsuo Akechi, MD, PhD, Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Mizuho-cho, Mizuho-ku, Nagoya 467-8601, Japan.
    • ,
  • Tatsuya Morita, MD

      Affiliations

    • Department of Palliative and Supportive Care, Palliative Care Team, and Seirei Hospice, Seirei Mikatahara General Hospital, Shizuoka, Japan
    • ,
  • Mitsunori Miyashita, RN, PhD

      Affiliations

    • Department of Adult Nursing/Palliative Care Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
    • ,
  • Kazuki Sato, RN, MHlthSci

      Affiliations

    • Department of Adult Nursing/Palliative Care Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
    • ,
  • Satoru Tsuneto, MD, PhD

      Affiliations

    • Department of Palliative Medicine, Osaka University Graduate School of Medicine, Osaka, Japan
    • ,
  • Yasuo Shima, MD

      Affiliations

    • Department of Palliative Medicine, Tsukuba Medical Center Hospital, Ibaraki, Japan
    • ,
  • Toshiaki A. Furukawa, MD, PhD

      Affiliations

    • Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan

,Accepted 4 January 2010.

References 

  1. McPherson CJ, Wilson KG, Murray MA. Feeling like a burden to others: a systematic review focusing on the end of life. Palliat Med. 2007;21:115–128
  2. McPherson CJ, Wilson KG, Murray MA. Feeling like a burden: exploring the perspectives of patients at the end of life. Soc Sci Med. 2007;64:419–427
  3. Hirai K, Miyashita M, Morita T, Sanjo M, Uchitomi Y. Good death in Japanese cancer care: a qualitative study. J Pain Symptom Manage. 2006;31:140–147
  4. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476–2482
  5. Chochinov HM, Kristjanson LJ, Hack TF, et al. Burden to others and the terminally ill. J Pain Symptom Manage. 2007;34:463–471
  6. McPherson CJ, Wilson KG, Lobchuk MM, Brajtman S. Self-perceived burden to others: patient and family caregiver correlates. J Palliat Care. 2007;23:135–142
  7. Morita T, Tsunoda J, Inoue S, Chihara S. An exploratory factor analysis of existential suffering in Japanese terminally ill cancer patients. Psychooncology. 2000;9:164–168
  8. Wilson KG, Curran D, McPherson CJ. A burden to others: a common source of distress for terminally ill. Cogn Behav Ther. 2005;34:115–123
  9. Cassidy JP, Davies DJ. Cultural and spiritual aspects of palliative medicine. In:  Doyle D,  Hanks G,  Cherny N,  Calman K editor. Oxford textbook of palliative medicine. 3rd ed. New York: Oxford University Press; 2004;p. 951–957
  10. Grimm PM. Coping: psychosocial issues. In:  Itano JK,  Taoka KN editor. Core curriculum for oncology nursing. 4th ed. New York: Saunders; 2005;p. 29–52
  11. Kemp C. Spiritual care interventions. In:  Ferrell BR,  Coyle N editor. Textbook of palliative nursing. New York: Oxford University Press; 2001;p. 407–414
  12. Miyashita M, Morita T, Tsuneto S, Sato K, 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
  13. Morita T, Sakaguchi Y, Hirai K, Tsuneto S, Shima Y. Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care. J Pain Symptom Manage. 2004;27:44–52
  14. Morita T, Akechi T, Ikenaga M, et al. Terminal delirium: recommendations from bereaved families' experience. J Pain Symptom Manage. 2007;34:579–589
  15. Miyashita M, Morita T, 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
  16. Fuhrer MJ, Rintala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Arch Phys Med Rehabil. 1992;73:552–557
  17. Akechi T, Okuyama T, Sugawara Y, et al. Suicidality in terminally ill Japanese patients with cancer. Cancer. 2004;100:183–191
  18. Miyashita M, Morita T, Sato K, et al. Good death inventory: a measure for evaluating good death from the bereaved family member's perspective. J Pain Symptom Manage. 2008;35:486–498
  19. Block SD. Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA. 2001;285:2898–2905
  20. Bolmsjo I. Existential issues in palliative care: interviews with cancer patients. J Palliat Care. 2000;16:20–24
  21. Breitbart W. Spirituality and meaning in supportive care: spirituality-and meaning-centered group psychotherapy interventions in advanced cancer. Support Care Cancer. 2002;10:272–280
  22. Chochinov HM. Dignity-conserving care: a new model for palliative care: helping the patient feel valued. JAMA. 2002;287:2253–2260
  23. Kissane DW, Clarke DM, Street AF. Demoralization syndrome—a relevant psychiatric diagnosis for palliative care. J Palliat Care. 2001;17:12–21
  24. Morita T, Kawa M, Honke Y, et al. Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan. Support Care Cancer. 2004;12:137–140
  25. Morita T, Tei Y, Inoue S, Chihara S. Care for spiritual and existential suffering of terminally ill cancer patients: integration by systematic review. [in Japanese] Jpn J Palliat Med. 2001;3:80–92
  26. Chochinov HM, Hack T, Hassard T, et al. Dignity in the terminally ill: a cross-sectional, cohort study. Lancet. 2002;360:2026–2030
  27. Kelly B, Burnett P, Pelusi D, et al. Terminally ill cancer patients' wish to hasten death. Palliat Med. 2002;16:339–345
  28. Seale C, Addington-Hall J. Euthanasia: why people want to die earlier. Soc Sci Med. 1994;39:647–654
  29. Henoch I, Danielson E. Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psychooncology. 2009;18:225–236
  30. Chochinov HM, Hack T, Hassard T, et al. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005;23:5520–5525
  31. Cotterell P. Striving for independence: experiences and needs of service users with life limiting conditions. J Adv Nurs. 2008;62:665–673
  32. Dahlin Y, Heiwe S. Patients' experience of physical therapy within palliative cancer care. J Palliat Care. 2009;25:12–20
  33. Mackey KM, Sparling JW. Experience of older women with cancer receiving hospice care: significance for physical therapy. Phys Ther. 2000;80:459–468
  34. Santiago-Palma J, Payne R. Palliative care and rehabilitation. Cancer. 2001;92:1049–1052
  35. Anderson CJ, Vogel LC. Domain-specific satisfaction in adults with pediatric-onset spinal cord injuries. Spinal Cord. 2003;41:684–691
  36. McPherson CJ, Addington-Hall JM. How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?. J Palliat Care. 2004;20:12–19
  37. Miyashita M, Sanjo M, Morita T, Hirai K, Uchitomi Y. Good death in cancer care: a nationwide quantitative study. Ann Oncol. 2007;18:1090–1097

 This study was supported by a Grant-in-Aid from the Japan Hospice Palliative Care Foundation.

PII: S0885-3924(10)00311-8

doi: 10.1016/j.jpainsymman.2009.12.015

Journal of Pain and Symptom Management
Volume 40, Issue 2 , Pages 224-234 , August 2010

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