Guideline development and use
Methods of guideline development
Expert advisory panel
How to use the guidelines
Grading of recommendations
Limitations of the guidelines
Timing of prognostic and end-of-life discussions
Preparation for the discussion
Physical and social setting
How to discuss prognosis and end-of-life issues
General strategies to facilitate hope and coping when discussing prognosis and end-of-life issues
Additional background information about specific content areas and issues
Role of self-care
- 1. 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.
- 2. Wenrich MD, Curtis JR, Shannon SE, et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 2001; 161: 868-874.
- 3. Parker S, Clayton JM, Hancock K, et al. Communication of prognosis and issues surrounding end of life (EOL) in adults in the advanced stages of a life-limiting illness: a systematic review. Sydney: University of Sydney, NHMRC Clinical Trials Centre, 2006. http://www.ctc.usyd.edu.au/research/publications/articles_2006.htm (accessed Apr 2007).
- 4. Higgins JPT, Green S, editors. Cochrane handbook for systematic reviews of interventions 4.2.5 [updated May 2005]. In: The Cochrane Library, Issue 3, 2005. Chichester, UK: John Wiley & Sons, Ltd.
- 5. National Health and Medical Research Council. Guidelines for the development and implementation of clinical practice guidelines. Canberra: AGPS, 1995.
- 6. National Health and Medical Research Council. A guide to the development, implementation and evaluation of clinical practice guidelines. Canberra: NHMRC, 1999. http://www.nhmrc.gov.au/publications/synopses/cp30syn.htm (accessed May 2007).
- 7. Raine R, Sanderson C, Black N. Developing clinical guidelines: a challenge to current methods. BMJ 2005; 331: 631-633.
- 8. Clayton JM, Butow PN, Arnold RM, Tattersall MHN. Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 2005; 13: 589-599.
- 9. Fellowes D, Wilkinson S, Moore P. Communication skills training for health care professionals working with cancer patients, their families and/or carers. Cochrane Database Syst Rev 2003; (2): CD003751.
- 10. Gysels M, Richardson A, Higginson I. Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness. Support Care Cancer 2004; 12: 692-700.
- 11. VandeKieft GK. Breaking bad news. Am Fam Physician 2001; 64: 1975-1978.
- 12. Mueller PS. Breaking bad news to patients: the SPIKES approach can make this difficult talk easier. Postgrad Med 2002; 112: 15-16, 18.
- 13. Baile W, Lenzi R, Parker A, et al. Oncologists’ attitudes toward and practices in giving bad news: an exploratory study. J Clin Oncol 2002; 20: 2189-2196.
- 14. Christakis NA, Iwashyna TJ. Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med 1998; 158: 2389-2395.
- 15. Clayton JM, Butow PN, Tattersall MHN. When and how to initiate discussion about prognosis and end-of-life issues. J Pain Symptom Manage 2005; 30: 132-144.
- 16. Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry 1995; 152: 1185-1191.
- 17. Morita T, Akechi T, Ikenaga M, et al. Communication about the ending of anticancer treatment and transition to palliative care. Ann Oncol 2004; 15: 1551-1557.
- 18. Chochinov HM, Tataryn DJ, Wilson KG, et al. Prognostic awareness and the terminally ill. Psychosomatics 2000; 41: 500-504.
- 19. Schofield PE, Butow PN, Thompson JF, et al. Psychological responses of patients receiving a diagnosis of cancer. Ann Oncol 2003; 14: 48-56.
- 20. Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002; 16: 297-303.
- 21. Tattersall MH, Gattellari M, Voigt K, Butow PN. When the treatment goal is not cure: are patients informed adequately? Support Care Cancer 2002; 10: 314-321.
- 22. Weeks JC, Cook EF, O’Day SJ, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998; 279: 1709-1714.
- 23. The AM, Hak T, Koeter G, van der Wal G. Collusion in doctor–patient communication about imminent death: an ethnographic study. West J Med 2001; 174: 247-253.
- 24. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med 2004; 164: 1999-2004.
- 25. Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004; 328: 1343-1347.
- 26. Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 2004; 22: 1721-1730.
- 27. Gordon EJ, Daugherty CK. ‘Hitting you over the head’: oncologists’ disclosure of prognosis to advanced cancer patients. Bioethics 2003; 17: 142-168.
- 28. Norton SA, Talerico KA. Facilitating end-of-life decision-making: strategies for communicating and assessing. J Gerontol Nurs 2000; 26(9): 6-13.
- 29. Norton SA, Bowers BJ. Working toward consensus: providers’ strategies to shift patients from curative to palliative treatment choices. Res Nurs Health 2001; 24: 258-269.
- 30. Yun YH, Lee CG, Kim SY, et al. The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol 2004; 22: 307-314.
- 31. Hagerty RG, Butow PN, Ellis PM, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol 2005; 23: 1278-1288.
- 32. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004; 291: 88-93.
- 33. Butow PN, Kazemi JN, Beeney LJ, et al. When the diagnosis is cancer: patient communication experiences and preferences. Cancer 1996; 77: 2630-2637.
- 34. Schofield PE, Beeney LJ, Thompson JF, et al. Hearing the bad news of a cancer diagnosis: the Australian melanoma patient’s perspective. Ann Oncol 2001; 12: 365-371.
- 35. Butow PN, Dowsett S, Hagerty R, Tattersall MH. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer 2002; 10: 161-168.
- 36. Curtis JR, Engelberg RA, Nielsen EL, et al. Patient–physician communication about end-of-life care for patients with severe COPD. Eur Respir J 2004; 24: 200-205.
- 37. Girgis A, Sanson-Fisher RW, Schofield MJ. Is there consensus between breast cancer patients and providers on guidelines for breaking bad news? Behav Med 1999; 25: 69-77.
- 38. Friedrichsen M. Breaking bad news in the transition from curative to palliative cancer care — patient’s view of the doctor giving the information. Support Care Cancer 2000; 8: 472-478.
- 39. Curtis JR, Wenrich MD, Carline JD, et al. Understanding physicians’ skills at providing end-of-life care perspectives of patients, families, and health care workers. J Gen Intern Med 2001; 16: 41-49.
- 40. Pentz RD, Lenzi R, Holmes F, et al. Discussion of the do-not-resuscitate order: a pilot study of perceptions of patients with refractory cancer. Support Care Cancer 2002; 10: 573-578.
- 41. Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA 2005; 294: 359-365.
- 42. Clayton J, Butow P, Arnold R, Tattersall M. Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 2005; 13: 733-742.
- 43. Makoul G. Essential elements of communication in medical encounters: the Kalamazoo consensus statement. Acad Med 2001; 76: 390-393.
- 44. Girgis A, Sanson-Fisher RW. Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol 1995; 13: 2449-2456.
- 45. Palliative Care Expert Group. Therapeutic guidelines: palliative care. Melbourne: Therapeutic Guidelines Limited, 2005.
- 46. National Breast Cancer Centre Advanced Breast Cancer Working Group. Clinical practice guidelines for the management of advanced breast cancer. Canberra: NHMRC, 2001. http://www.nhmrc.gov.au/publications/synopses/cp76syn.htm (accessed May 2007).
- 47. Sapir R, Catane R, Kaufman B, et al. Cancer patient expectations of and communication with oncologists and oncology nurses: the experience of an integrated oncology and palliative care service. Support Care Cancer 2000; 8: 458-463.
- 48. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000; 132: 825-832.
- 49. Rose KE. A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. J Clin Nurs 1999; 8: 81-88.
- 50. Emanuel LL, von Gunten CF, Ferris FD, editors. Communicating bad news. In: The Education for Physicians on End-of-life Care (EPEC) curriculum. Chicago: The Robert Wood Johnson Foundation, 1999.
- 51. Schofield P, Carey M, Love A, et al. ‘Would you like to talk about your future treatment options?’ Discussing the transition from curative cancer treatment to palliative care. Palliat Med 2006; 20: 397-406.
- 52. Butow PN, Maclean M, Dunn SM, et al. The dynamics of change: cancer patients’ preferences for information, involvement and support. Ann Oncol 1997; 8: 857-863.
- 53. Clayton JM, Butow PN, Tattersall MHN. The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer 2005; 103: 1957-1964.
- 54. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA 2004; 291: 483-491.
- 55. Goldstein D, Thewes B, Butow P. Communicating in a multicultural society. II: Greek community attitudes towards cancer in Australia. Intern Med J 2002; 32: 289-296.
- 56. Orana C, Koenig B, Davis AJ. Cultural aspects of nondisclosure. Camb Q Healthc Ethics. 1994; 3: 338-346.
- 57. Huang X, Butow P, Meiser B, Goldstein D. Attitudes and information needs of Chinese migrant cancer patients and their relatives. Aust N Z J Med 1999; 29: 207-213.
- 58. Back AL, Arnold RM. Dealing with conflict in caring for the seriously ill: “it was just out of the question”. JAMA 2005; 293: 1374-1381.
- 59. Yardley SJ, Davis CL, Sheldon F. Receiving a diagnosis of lung cancer: patients’ interpretations, perceptions and perspectives. Palliat Med 2001; 15: 379-386.
- 60. Greisinger AJ, Lorimor RJ, Aday LA, et al. Terminally ill cancer patients: their most important concerns. Cancer Pract 1997; 5: 147-154.
- 61. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Soc Sci Med 1999; 48: 1341-1352.
- 62. Clayton JM, Butow PN, Arnold RM, Tattersall MHN. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer 2005; 103: 1965-1975.
- 63. Grbich C, Parker D, Maddocks I. Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer. Prog Palliat Care 2000; 8: 345-350.
- 64. Carter H, MacLeod R, Brander P, McPherson K. Living with a terminal illness: patients’ priorities. J Adv Nurs 2004; 45: 611-620.
- 65. Friedrichsen MJ. Justification for information and knowledge: perceptions of family members in palliative home care in Sweden. Palliat Support Care 2003; 1: 239-245.
- 66. Heaven CM, Maguire P. Disclosure of concerns by hospice patients and their identification by nurses. Palliat Med 1997; 11: 283-290.
- 67. Lobb EA, Kenny DT, Butow PN, Tattersall MH. Women’s preferences for discussion of prognosis in early breast cancer. Health Expect 2001; 4: 48-57.
- 68. Barnett MM. Effect of breaking bad news on patients’ perceptions of doctors. J R Soc Med 2002; 95: 343-347.
- 69. Bradley EH, Hallemeier AG, Fried TR, et al. Documentation of discussions about prognosis with terminally ill patients. Am J Med 2001; 111: 218-223.
- 70. Brown RF, Butow PN, Henman M, et al. Responding to the active and passive patient: flexibility is the key. Health Expect 2002; 5: 236-245.
- 71. Cox A, Holbrook D, Rutter M. Psychiatric interviewing techniques VI. Experimental study: eliciting feelings. Br J Psychiatry 1981; 139: 144-152.
- 72. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians–American Society of Internal Medicine. Ann Intern Med 1999; 130: 744-749.
- 73. Maguire P, Piceathly C. Learning counselling. In: Doyle D, Hanks G, Cherny N, Calman K, editors. Oxford textbook of palliative medicine. New York: Oxford University Press, 2004.
- 74. Schofield P, Ball D, Smith JG, et al. Optimism and survival in lung carcinoma patients. Cancer 2004; 100: 1276-1282.
- 75. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997; 277: 1485-1492.
- 76. Haidet P, Hamel MB, Davis RB, et al. Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Am J Med 1998; 105: 222-229.
- 77. Teno J, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45: 500-507.
- 78. Chan A, Woodruff RK. Communicating with patients with advanced cancer. J Palliat Care 1997; 13: 29-33.
- 79. Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients’ perceptions of their disease and its treatment. Br J Cancer 1988; 58: 355-358.
- 80. Gattellari M, Butow PN, Tattersall MH, et al. Misunderstanding in cancer patients: why shoot the messenger? Ann Oncol 1999; 10: 39-46.
- 81. Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc 2003; 51: 1398-1403.
- 82. Ley P. Towards better doctor–patient communications. In: Bennett AE, editor. Communications between doctors and patients. Oxford: Oxford University Press, 1976: 77-96.
- 83. Lobb EA, Butow PN, Kenny DT, Tattersall MH. Communicating prognosis in early breast cancer: do women understand the language used? Med J Aust 1999; 171: 290-294. <MJA full text>
- 84. Chapman K, Abraham C, Jenkins V, Fallowfield L. Lay understanding of terms used in cancer consultations. Psychooncology 2003; 12: 557-566.
- 85. Hargie O, Marshall P. Interpersonal communication: a theoretical framework. In: Hargie O, editor. A handbook of communication skills. London: Routledge, 1986.
- 86. Humphrey GB, Littlewood JL, Kamps WA. Physician/patient communication: a model considering the interaction of physicians’ therapeutic strategy and patients’ coping style. J Cancer Educ 1992; 7: 147-152.
- 87. Fallowfield L. Participation of patients in decisions about treatment for cancer. BMJ 2001; 323: 1144.
- 88. Gattellari M, Voigt KJ, Butow PN, Tattersall MH. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 2002; 20: 503-513.
- 89. Lofmark R, Nilstun T. Not if, but how: one way to talk with patients about forgoing life support. Postgrad Med J 2000; 76: 26-28.
- 90. Iconomou G, Viha A, Koutras A, et al. Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece. Palliat Med 2002; 16: 315-321.
- 91. Johnston G, Abraham C. Managing awareness: negotiating and coping with a terminal prognosis. Int J Palliat Nurs 2000; 6: 485-494.
- 92. Kai I, Ohi G, Yano E, et al. Communication between patients and physicians about terminal care: a survey in Japan. Soc Sci Med 1993; 36: 1151-1159.
- 93. Addington-Hall J, McCarthy M. Dying from cancer: results of a national population-based investigation. Palliat Med 1995; 9: 295-305.
- 94. Mouton C, Teno JM, Mor V, Piette J. Communication of preferences for care among human immunodeficiency virus-infected patients. Barriers to informed decisions? Arch Fam Med 1997; 6: 342-347.
- 95. Kaplowitz SA, Campo S, Chiu WT. Cancer patients’ desires for communication of prognosis information. Health Commun 2002; 14: 221-241.
- 96. Chochinov HM, Hack T, Hassard T, et al. Dignity in the terminally ill: a cross-sectional, cohort study. Lancet 2002; 360: 2026-2030.
- 97. Delvecchio Good MJ, Good BJ, Schaffer C, et al. American oncology and the discourse on hope. Cult Med Psychiatry 1990; 14: 59-79.
- 98. Carter PA. A not-so-silent cry for help. Older female cancer caregivers’ need for information. J Holist Nurs 2001; 19: 271-284.
- 99. Cutcliffe JR. How do nurses inspire and instil hope in terminally ill HIV patients? J Adv Nurs 1995; 22: 888-895.
- 100. Flemming K. The meaning of hope to palliative care cancer patients. Int J Palliat Nurs 1997; 3: 14-18.
- 101. Meredith C, Symonds P, Webster L, et al. Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. BMJ 1996; 313: 724-726.
- 102. Baile WF, Buckman R, Lenzi R, et al. SPIKES — a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5: 302-311.
- 103. Back AL, Arnold RM, Baile WF, et al. Approaching difficult communication tasks in oncology. CA Cancer J Clin 2005; 55: 164-177.
- 104. Clover A, Browne J, McErlain P, Vandenberg B. Patient approaches to clinical conversations in the palliative care setting. J Adv Nurs 2004; 48: 333-341.
- 105. Dowsett SM, Saul JL, Butow PN, et al. Communication styles in the cancer consultation: preferences for a patient-centred approach. Psychooncology 2000; 9: 147-156.
- 106. Gattellari M, Butow PN, Tattersall MH. Sharing decisions in cancer care. Soc Sci Med 2001; 52: 1865-1878.
- 107. Fischer GS, Tulsky JA, Arnold RM. Communicating a poor prognosis. In: Portenoy RK, Bruera E, editors. Topics in palliative care. New York: Oxford University Press, 2000.
- 108. Friedrichsen MJ, Strang PM, Carlsson ME. Cancer patients’ interpretations of verbal expressions when given information about ending cancer treatment. Palliat Med 2002; 16: 323-330.
- 109. Baile WF, Beale EA. Giving bad news to cancer patients: matching process and content. J Clin Oncol 2001; 19: 2575-2577.
- 110. Palliative Care Australia. A guide to palliative care service development: a population approach. Canberra: Palliative Care Australia, 2005. http://www.pallcare.org.au/Default.aspx?tabid=1221 (accessed May 2007).
- 111. Weissman DE, Griffie J. The palliative care consultation service of the medical college of Wisconsin. J Pain Symptom Manage 1994; 9: 474-479.
- 112. World Health Organization. National cancer control guidelines: policies and managerial guidelines. Geneva: WHO, 2002.
- 113. Palliative Care Australia. Standards for providing quality palliative care for all Australians. Canberra: Palliative Care Australia, 2005. http://www.pallcare.org.au/Default.aspx?tabid=1221 (accessed May 2007).
- 114. Hearn J, Higginson I. Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review. Palliat Med 1998; 12: 317-332.
- 115. Stockler M, Tattersall M, Boyer M, et al. Disarming the guarded prognosis: predicting survival in newly referred patients with incurable cancer. Br J Cancer 2006; 94: 208-212.
- 116. Christakis N. Death foretold: prophecy and prognosis in medical care. Chicago: University of Chicago Press, 1999.
- 117. Lamont EB, Christakis NA. Complexities in prognostication in advanced cancer: “to help them live their lives the way they want to”. JAMA 2003; 290: 98-104.
- 118. Glare P. Prognosis in palliative care: ten common questions. Prog Palliat Care 2004; 12: 10-15.
- 119. Fukui S. Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nurs Health Sci 2004; 6: 29-36.
- 120. Emanuel LL, von Gunten CF, Ferris FD, editors. Advance care planning. In: The Education for Physicians on End-of-life Care (EPEC) curriculum. Chicago: The Robert Wood Johnson Foundation, 1999.
- 121. Roter DL, Larson S, Fischer GS, et al. Experts practice what they preach: a descriptive study of best and normative practices in end-of-life discussions. Arch Intern Med 2000; 160: 3477-3485.
- 122. NSW Health. Using advance care directives: New South Wales. Sydney: NSW Health, 2004. http://www.health.nsw.gov.au/policies/gl/2005/GL2005_056.html (accessed May 2007).
- 123. Tulsky JA, Chesney MA, Lo B. See one, do one, teach one? House staff experience discussing do-not-resuscitate orders. Arch Intern Med 1996; 156: 1285-1289.
- 124. Molloy W. Let me decide: why we all need a living will. Canada: Penguin Group, 2005.
- 125. Golin CE, Wenger NS, Liu H, et al. A prospective study of patient–physician communication about resuscitation. J Am Geriatr Soc 2000; 48 (5 Suppl): S52-S60.
- 126. Martin DK, Emanuel LL, Singer PA. Planning for the end of life. Lancet 2000; 356: 1672-1676.
- 127. NSW Health. Guidelines for end-of-life care and decision-making. Sydney: NSW Health, 2005. http://www.health.nsw.gov.au/pubs/2005/endlifecare.html (accessed May 2007).
- 128. Emanuel LL, von Gunten CF, Ferris FD, editors. Withholding, withdrawing therapy. In: The Education for Physicians on End-of-life Care (EPEC) curriculum. Chicago: The Robert Wood Johnson Foundation, 1999.
- 129. Dexter PR, Wolinsky FD, Gramelspacher GP, et al. Effectiveness of computer-generated reminders for increasing discussions about advance directives and completion of advance directive forms. A randomized, controlled trial. Ann Intern Med 1998; 128: 102-110.
- 130. Biegler P, Stewart C, Savulescu J, Skene L. Determining the validity of advance directives. Med J Aust 2000; 172: 545-548. <MJA full text>
- 131. Patel R, Sinuf T, Cook D. Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care 2004; 19: 1-9.
- 132. Fagerlin A, Schneider C. Enough: the failure of the living will. Hastings Cent Rep 2004; 34: 30-42.
- 133. Lo B, Steinbrook R. Resuscitating advance directives. Arch Intern Med 2004; 164: 1501-1506.
- 134. Teno J, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45: 508-512.
- 135. Hammes B, Rooney B. Death and end-of-life planning in one Midwestern community. Arch Intern Med 1998; 158: 383-390.
- 136. Prendergast T. Advance care planning: Pitfalls, progress, promise. Crit Care Med 2001; 29 (2 Suppl): N34-N39.
- 137. Demoratz MJ. Advance directives: getting patients to complete them before they need them. Case Manager 2005; 16: 61-63.
- 138. Doyal L, Wilsher D. Withholding cardiopulmonary resuscitation: proposals for formal guidelines. BMJ 1993; 306: 1593-1596.
- 139. Emanuel LL, von Gunten CF, Ferris FD, eds. Medical futility. In: The Education of Physicians on End-of-life Care (EPEC) curriculum. Chicago: The Robert Wood Johnson Foundation, 1999.
- 140. Quill TE. Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room”. JAMA 2000; 284: 2502-2507.
- 141. Ewer MS, Kish SK, Martin CG, et al. Characteristics of cardiac arrest in cancer patients as a predictor of survival after cardiopulmonary resuscitation. Cancer 2001; 92: 1905-1912.
- 142. Bedell S, Pelle D, Maher P, Cleary P. Do-not-resuscitate orders for critically-ill patients in the hospital: how are they used and what is their impact? JAMA 1986; 256: 233-237.
- 143. Peatfield R, Sillett R, Taylor D, McNicol M. Survival after cardiac arrest in hospital. Lancet 1977; 1: 1223-1225.
- 144. Manisty C, Waxman J. Doctors should not discuss resuscitation with terminally ill patients: FOR. BMJ 2003; 327: 614-615.
- 145. Dugan DO, Gluck EH. Discussing life-sustaining treatments: an overview and communications guide for primary care physicians. Compr Ther 2004; 30: 25-36.
- 146. British Medical Association. Decisions relating to cardiopulmonary resuscitation. A joint statement from the British Medical Association, the Resuscitation Council (UK), and the Royal College of Nursing. London: BMA, 2002. http://www.bma.org.uk/ap.nsf/Content/cardioresus (accessed May 2007).
- 147. National Council for Hospice and Specialist Palliative Care Services and the Association for Palliative Medicine. Ethical decision making in palliative care: cardiopulmonary resuscitation for people who are terminally ill. J R Coll Physicians Edinb 2002; 32: 280.
- 148. Australian Medical Association. Care of severely and terminally ill patients — 1997 [position statement]. Sydney: AMA, 1997. http://www.ama.com.au/web.nsf/doc/SHED-5FK3DB (accessed May 2007).
- 149. Consent to Medical Treatment and Palliative Care Act 1995 (SA).
- 150. Stewart C. Medical futility. In: Albrecht G, editor. Encyclopedia of disability. Thousand Oaks, Calif: SAGE Publications, 2005.
- 151. Eliott JA, Olver IN. Legitimating do-not-resuscitate orders: a discursive study of cancer patients’ speech. J Palliat Care 2003; 19: 100-106.
- 152. Olver I, Eliott J, Blake-Mortimer J. Cancer patients’ perceptions of do not resuscitate orders. Psychooncology 2002; 11: 181-187.
- 153. Kerridge I, Myser C, Mitchell K, Hamblin J. Guidelines for no-CPR orders. Med J Aust 1994; 161: 270-272.
- 154. Luce JM. Physicians do not have a responsibility to provide futile or unreasonable care if a patient or family insists. Crit Care Med 1995; 23: 760-766.
- 155. Dunphy K. Futilitarianism: knowing how much is enough in end-of-life health care. Palliat Med 2000; 14: 313-322.
- 156. Teno JM, Stevens M, Spernak S, Lynn J. Role of written advance directives in decision making: insights from qualitative and quantitative data. J Gen Intern Med 1998; 13: 439-446.
- 157. National Breast Cancer Centre and National Cancer Control Initiative. Clinical practice guidelines for the psychosocial care of adults with cancer. Canberra: NHMRC, 2003. http://www.nhmrc.gov.au/publications/synopses/cp90syn.htm (accessed May 2007).
- 158. Pitorak EF. Learning to have difficult conversations leads to increased hospice referrals. Home Healthc Nurse 2003; 21: 629-632.
- 159. Karlawish JH, Quill T, Meier DE. A consensus-based approach to providing palliative care to patients who lack decision-making capacity: ACP-ASIM End-of-Life Care Consensus Panel. Ann Intern Med 1999; 130: 835-840.
- 160. Emanuel LL, von Gunten CF, Ferris FD. Advance care planning. Arch Fam Med 2000; 9: 1181-1187.
- 161. Lawton S, Carroll D. Communication skills and district nurses: examples in palliative care. Br J Community Nurs 2005; 10: 134-136.
- 162. Akabayashi A, Fetters MD, Elwyn TS. Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion. J Med Ethics 1999; 25: 296-301.
- 163. Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med 2004; 7: 19-25.
- 164. Henman M, Butow P, Brown R, et al. Lay constructions of decision making in cancer care. Psychooncology 2002; 11: 295-306.
- 165. Rousseau P. The art of oncology: when the tumor is not the target. Death denial. J Clin Oncol 2000; 18: 3998-3999.
- 166. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA 2001; 286: 3007-3014.
- 167. Turner J, Kelly B. The concept of debriefing and its application to staff dealing with life-threatening illnesses such as cancer, AIDS and other conditions. In: Raphael B, Wilson JP, editors. Psychological debriefing: theory, practice and evidence. Cambridge: Cambridge University Press, 2000.
Publication of your online response is subject to the Medical Journal of Australia's editorial discretion. You will be notified by email within five working days should your response be accepted.