www.mja.com.au Supplement

Prognostic and end-of-life communication is a vital skill for health care professionals caring for patients with progressive life-limiting illnesses, and their families. Expert opinion varies, and high-quality evidence on how best to discuss these issues with such patients and their caregivers is limited. These guidelines were developed to address these issues. The guidelines were developed through the following methods: - Systematic literature review of the best available evidence on discussion of prognosis and end-of-life issues; - Review of previous relevant guidelines and expert opinions in the literature; and - Refining of draft guidelines by an expert advisory panel. The key recommendations of these guidelines are for health professionals to consider the recommendations conveyed by the acronym PREPARED.

[1]  W. Mackillop,et al.  Cancer patients' perceptions of their disease and its treatment. , 1988, British Journal of Cancer.

[2]  Vincent Mor,et al.  Family perspectives on end-of-life care at the last place of care. , 2004, JAMA.

[3]  G. Iconomou,et al.  Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece , 2002, Palliative medicine.

[4]  P. Carter.  A Not-so-Silent Cry for Help , 2001, Journal of holistic nursing : official journal of the American Holistic Nurses' Association.

[5]  Douglas K. Martin,et al.  Planning for the end of life , 2000, The Lancet.

[6]  Phyllis N Butow,et al.  When the treatment goal is not cure: are cancer patients equipped to make informed decisions? , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[7]  W M Tierney,et al.  Effectiveness of Computer-Generated Reminders for Increasing Discussions about Advance Directives and Completion of Advance Directive Forms , 1998, Annals of Internal Medicine.

[8]  W. Chiu,et al.  Cancer Patients' Desires for Communication of Prognosis Information , 2002, Health communication.

[9]  P. Butow,et al.  Misunderstanding in cancer patients: why shoot the messenger? , 1999, Annals of oncology : official journal of the European Society for Medical Oncology.

[10]  P. Cleary,et al.  Do-not-resuscitate orders for critically ill patients in the hospital. How are they used and what is their impact? , 1986, JAMA.

[11]  T. Feeley,et al.  Characteristics of cardiac arrest in cancer patients as a predictor of survival after cardiopulmonary resuscitation , 2001, Cancer.

[12]  S. Crossing,et al.  Communicating prognosis in early breast cancer: do women understand the language used? , 2000, The Medical journal of Australia.

[13]  J. Lynn,et al.  Role of written advance directives in decision making , 1998, Journal of General Internal Medicine.

[14]  H. Chochinov,et al.  Desire for death in the terminally ill. , 1995, The American journal of psychiatry.

[15]  M. Gillick,et al.  Advance care planning , 2000, BMJ.

[16]  L. Fallowfield,et al.  Participation of patients in decisions about treatment for cancer , 2001, BMJ : British Medical Journal.

[17]  Charles Abraham,et al.  Lay understanding of terms used in cancer consultations , 2003, Psycho-oncology.

[18]  P. Butow,et al.  Hearing the bad news of a cancer diagnosis: the Australian melanoma patient's perspective. , 2001, Annals of oncology : official journal of the European Society for Medical Oncology.

[19]  P. Butow,et al.  Retraction Note: When the treatment goal is not cure: are patients informed adequately? , 2002, Supportive Care in Cancer.

[20]  J. Eliott,et al.  Legitimating Do-not-Resuscitate Orders: A Discursive Study of Cancer Patients’ Speech , 2003, Journal of palliative care.

[21]  Michael J Demoratz.  Advance directives: getting patients to complete them before they need them. , 2005, The Case manager.

[22]  P. Butow,et al.  When and how to initiate discussion about prognosis and end-of-life issues with terminally ill patients. , 2005, Journal of pain and symptom management.

[23]  W. Baile,et al.  SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. , 2000, The oncologist.

[24]  G. Makoul,et al.  Essential Elements of Communication in Medical Encounters: The Kalamazoo Consensus Statement , 2001, Academic medicine : journal of the Association of American Medical Colleges.

[25]  R. Sanson-Fisher,et al.  Breaking bad news: consensus guidelines for medical practitioners. , 1995, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  K. Flemming.  The meaning of hope to palliative care cancer patients. , 1997, International journal of palliative nursing.

[27]  J. Carline,et al.  Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. , 2001, Archives of internal medicine.

[28]  P. Glare.  Prognosis in palliative care: ten common questions , 2004 .

[29]  G Johnston,et al.  Managing awareness: negotiating and coping with a terminal prognosis. , 2000, International journal of palliative nursing.

[30]  N. Christakis,et al.  Factors considered important at the end of life by patients, family, physicians, and other care providers. , 2000, JAMA.

[31]  T. Smith.  The art of oncology: when the tumor is not the target. Tell it like it is. , 2000, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[32]  K. Dunphy.  Futilitarianism: knowing how much is enough in end-of-life health care , 2000, Palliative medicine.

[33]  B. Bowers,et al.  Working toward consensus: providers' strategies to shift patients from curative to palliative treatment choices. , 2001, Research in nursing & health.

[34]  J. Carline,et al.  Understanding physicians' skills at providing end-of-life care perspectives of patients, families, and health care workers. , 2001 .

[35]  T. Quill.  Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room". , 2000, JAMA.

[36]  D. Meier,et al.  The inner life of physicians and care of the seriously ill. , 2001, JAMA.

[37]  M. Stockler,et al.  Disarming the guarded prognosis: predicting survival in newly referred patients with incurable cancer , 2005, British Journal of Cancer.

[38]  Sharon L. Snyder,et al.  Encyclopedia of disability , 2006 .

[39]  T. Prendergast,et al.  Advance care planning: pitfalls, progress, promise. , 2001, Critical care medicine.

[40]  P. Butow,et al.  Psychological responses of patients receiving a diagnosis of cancer. , 2003, Annals of oncology : official journal of the European Society for Medical Oncology.

[41]  P. Butow,et al.  Communicating prognosis to patients with metastatic disease: what do they really want to know? , 2002, Supportive Care in Cancer.

[42]  P. Butow,et al.  Communicating in a multicultural society II: Greek community attitudes towards cancer in Australia , 2002, Internal medicine journal.

[43]  T. Hak,et al.  Collusion in doctor-patient communication about imminent death: an ethnographic study. , 2000, The Western journal of medicine.

[44]  Phyllis N Butow,et al.  The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end‐of‐life issues , 2005, Cancer.

[45]  Hannah I. Lipman.  Medical futility. , 2007, The American journal of geriatric cardiology.

[46]  T. Hak,et al.  Collusion in doctor-patient communication about imminent death: an ethnographic study , 2000, BMJ : British Medical Journal.

[47]  P. Butow,et al.  Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study , 2005, Supportive Care in Cancer.

[48]  N. Rankin,et al.  Clinical practice guidelines for the psychosocial care of adults with cancer , 2005, Psycho-oncology.

[49]  C. Heaven,et al.  Disclosure of concerns by hospice patients and their identification by nurses , 1997, Palliative medicine.

[50]  D. Carroll,et al.  Communication skills and district nurses: examples in palliative care. , 2005, British journal of community nursing.

[51]  P. Butow,et al.  Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers , 2005, Cancer.

[52]  T. Nilstun,et al.  Not if, but how: one way to talk with patients about forgoing life support , 2000, Postgraduate medical journal.

[53]  B. Rooney,et al.  Death and end-of-life planning in one midwestern community. , 1998, Archives of internal medicine.

[54]  I. Higginson,et al.  Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review , 1998, Palliative medicine.

[55]  S. Yardley,et al.  Receiving a diagnosis of lung cancer: patients' interpretations, perceptions and perspectives , 2001, Palliative medicine.

[56]  B. Rapkin,et al.  Communicating with patients about advanced cancer. , 1998, JAMA.

[57]  J. Lynn,et al.  Death Foretold: Prophecy and Prognosis in Medical Care , 2001, BMJ : British Medical Journal.

[58]  J. Tulsky,et al.  Experts practice what they preach: A descriptive study of best and normative practices in end-of-life discussions. , 2000, Archives of internal medicine.

[59]  Phyllis N Butow,et al.  Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[60]  P. Taft.  Breaking bad news. , 2009, Nursing standard (Royal College of Nursing (Great Britain) : 1987).

[61]  E. Cook,et al.  Relationship between cancer patients' predictions of prognosis and their treatment preferences. , 1998, JAMA.

[62]  J. Browne,et al.  Patient approaches to clinical conversations in the palliative care setting. , 2004, Journal of advanced nursing.

[63]  E. Yano,et al.  Communication between patients and physicians about terminal care: a survey in Japan. , 1993, Social science & medicine.

[64]  A. Cox,et al.  Psychiatric Interviewing Techniques , 1981, British Journal of Psychiatry.

[65]  Phyllis N Butow,et al.  Cancer patient preferences for communication of prognosis in the metastatic setting. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[66]  J. Piette,et al.  Communication of preferences for care among human immunodeficiency virus-infected patients. Barriers to informed decisions? , 1997, Archives of family medicine.

[67]  Joshua Hauser,et al.  Supporting family caregivers at the end of life: "they don't know what they don't know". , 2004, JAMA.

[68]  P. Butow,et al.  Sharing decisions in cancer care. , 2001, Social science & medicine.

[69]  P. Butow,et al.  Attitudes and information needs of Chinese migrant cancer patients and their relatives. , 1999, Australian and New Zealand journal of medicine.

[70]  W. Kamps,et al.  Physician/patient communication: a model considering the interaction of physicians' therapeutic strategy and patients' coping style. , 1992, Journal of cancer education : the official journal of the American Association for Cancer Education.

[71]  S. Wilkinson,et al.  Communication skills training for health care professionals working with cancer patients, their families and/or carers. , 2004, The Cochrane database of systematic reviews.

[72]  J. Cutcliffe.  How do nurses inspire and instil hope in terminally ill HIV patients? , 2006, Journal of advanced nursing.

[73]  J. Lynn,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. , 1998, The American journal of medicine.

[74]  M. A. O'connor,et al.  Do Advance Directives Provide Instructions That Direct Care? , 1997, Journal of the American Geriatrics Society.

[75]  S. Norton,et al.  Facilitating end-of-life decision-making: strategies for communicating and assessing. , 2000, Journal of gerontological nursing.

[76]  D. Meier,et al.  A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity , 1999, Annals of Internal Medicine.

[77]  R. Winn,et al.  Terminally ill cancer patients. Their most important concerns. , 1997, Cancer practice.

[78]  A. Fagerlin,et al.  Enough. The failure of the living will. , 2004, The Hastings Center report.

[79]  E. Bradley,et al.  Documentation of discussions about prognosis with terminally ill patients. , 2001, The American journal of medicine.

[80]  W. Baile,et al.  Giving bad news to cancer patients: matching process and content. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[81]  J. Tulsky.  Beyond advance directives: importance of communication skills at the end of life. , 2005, JAMA.

[82]  Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden , 2003, Palliative and Supportive Care.

[83]  N. Christakis,et al.  Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to". , 2003, JAMA.

[84]  J. Savulescu,et al.  Determining the validity of advance directives , 2000, The Medical journal of Australia.

[85]  Carol S. North,et al.  Psychological Debriefing: Theory, Practice, and Evidence , 2001 .

[86]  D. Parker,et al.  Communication and Information Needs of Care-Givers of Adult Family Members at Diagnosis and during Treatment of Terminal Cancer , 2000 .

[87]  H. Chochinov,et al.  Prognostic awareness and the terminally ill. , 2000, Psychosomatics.

[88]  L. Fallowfield,et al.  Truth may hurt but deceit hurts more: communication in palliative care , 2002, Palliative medicine.

[89]  S. Fukui,et al.  Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. , 2004, Nursing & health sciences.

[90]  W. Baile,et al.  Oncologists' attitudes toward and practices in giving bad news: an exploratory study. , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[91]  B. Koenig,et al.  Cultural Aspects of Nondisclosure , 1994, Cambridge Quarterly of Healthcare Ethics.

[92]  P. Butow,et al.  Women’s preferences for discussion of prognosis in early breast cancer , 2001, Health Expectations.

[93]  L. Doyal,et al.  Withholding cardiopulmonary resuscitation: proposals for formal guidelines. , 1993, BMJ.

[94]  L. Kristjanson,et al.  What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study , 2004, BMJ : British Medical Journal.

[95]  E. Emanuel,et al.  Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? , 2004, Archives of internal medicine.

[96]  R. MacLeod,et al.  Living with a terminal illness: patients' priorities. , 2004, Journal of advanced nursing.

[97]  M. Carlsson,et al.  Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment , 2002, Palliative medicine.

[98]  J. Tulsky,et al.  See One, Do One, Teach One?: House Staff Experience Discussing Do-Not-Resuscitate Orders , 1996 .

[99]  P. Butow,et al.  Communication styles in the cancer consultation: preferences for a patient‐centred approach , 2000, Psycho-oncology.

[100]  J. Tulsky,et al.  Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. , 1999, Annals of internal medicine.

[101]  K C Carriere,et al.  Information needs and decisional preferences in women with breast cancer. , 1997, JAMA.

[102]  J. Addington-hall,et al.  Dying from cancer: results of a national population-based investigation , 1995, Palliative medicine.

[103]  R. Sanson-Fisher,et al.  Is there consensus between breast cancer patients and providers on guidelines for breaking bad news? , 1999, Behavioral medicine.

[104]  J. Kutner,et al.  Information needs in terminal illness. , 1999, Social science & medicine.

[105]  T. Morita,et al.  Communication about the ending of anticancer treatment and transition to palliative care. , 2004, Annals of oncology : official journal of the European Society for Medical Oncology.

[106]  C. Verschraegen,et al.  Discussion of the do-not-resuscitate order: a pilot study of perceptions of patients with refractory cancer , 2002, Supportive Care in Cancer.

[107]  R. Steinbrook,et al.  Resuscitating advance directives. , 2004, Archives of internal medicine.

[108]  E. Gordon,et al.  'Hitting You Over the Head': Oncologists' Disclosure of Prognosis to Advanced Cancer Patients , 2003, Bioethics.

[109]  P. Symonds,et al.  Information needs of cancer patients in west Scotland: cross sectional survey of patients' views , 1996, BMJ.

[110]  Sanchia Aranda,et al.  Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. , 2004, Journal of palliative medicine.

[111]  I. Higginson.  Doctors should not discuss resuscitation with terminally ill patients , 2003, BMJ : British Medical Journal.

[112]  I. Olver,et al.  Cancer patients' perceptions of do not resuscitate orders , 2002, Psycho-oncology.

[113]  I. Higginson,et al.  Communication training for health professionals who care for patients with cancer: a systematic review of effectiveness , 2004, Supportive Care in Cancer.

[114]  P. Butow,et al.  The dynamics of change: cancer patients' preferences for information, involvement and support. , 1997, Annals of oncology : official journal of the European Society for Medical Oncology.

[115]  P. Butow,et al.  Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study , 2005, Supportive Care in Cancer.

[116]  Phyllis N Butow,et al.  Responding to the active and passive patient: flexibility is the key , 2002, Health expectations : an international journal of public participation in health care and health policy.

[117]  Rosalind Raine,et al.  Developing clinical guidelines: a challenge to current methods , 2005, BMJ : British Medical Journal.

[118]  J. Tulsky,et al.  Approaching Difficult Communication Tasks in Oncology 1 , 2005, CA: a cancer journal for clinicians.

[119]  M. Fetters,et al.  Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion. , 1999, Journal of medical ethics.

[120]  N. Christakis,et al.  Attitude and self-reported practice regarding prognostication in a national sample of internists. , 1998, Archives of internal medicine.

[121]  P. Butow,et al.  When the diagnosis is cancer: Patient communication experiences and preferences , 1996, Cancer.

[122]  J. O’Leary,et al.  Prognosis Communication in Serious Illness: Perceptions of Older Patients, Caregivers, and Clinicians , 2003, Journal of the American Geriatrics Society.

[123]  D. Patrick,et al.  Patient-physician communication about end-of-life care for patients with severe COPD , 2004, European Respiratory Journal.

[124]  D. Bratlid.  [Guidelines for end-of-life care]. , 2008, Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke.

[125]  J. Luce.  Physicians do not have a responsibility to provide futile or unreasonable care if a patient or family insists. , 1995, Critical care medicine.

[126]  N. Dawson,et al.  A Prospective Study of Patient‐Physician Communication About Resuscitation , 2000, Journal of the American Geriatrics Society.

[127]  B. Good,et al.  American oncology and the discourse on hope , 1990, Culture, medicine and psychiatry.

[128]  Sang‐wook Lee,et al.  The attitudes of cancer patients and their families toward the disclosure of terminal illness. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[129]  W. Knaus,et al.  Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self‐Determination Act and the SUPPORT Intervention , 1997 .

[130]  Carol L. Davis,et al.  Oxford Textbook of Palliative Medicine , 1994, British Journal of Cancer.

[131]  E. Gluck,et al.  Discussing life-sustaining treatments: An overview and communications guide for primary care physicians , 2004, Comprehensive therapy.

[132]  Decisions Relating to Cardiopulmonary Resuscitation: a joint statement from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing , 2001, Journal of medical ethics.

[133]  M. Carey,et al.  ‘Would you like to talk about your future treatment options?’ discussing the transition from curative cancer treatment to palliative care , 2006, Palliative medicine.

[134]  A. Back,et al.  Dealing with conflict in caring for the seriously ill: "it was just out of the question". , 2005, JAMA.

[135]  D. Weissman,et al.  The Palliative Care Consultation Service of the Medical College of Wisconsin. , 1994, Journal of pain and symptom management.

[136]  K. Rose,et al.  A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. , 1999, Journal of clinical nursing.

[137]  T. Hassard,et al.  Dignity in the terminally ill: a cross-sectional, cohort study , 2002, The Lancet.

[138]  Nicholas Christakis,et al.  In Search of a Good Death: Observations of Patients, Families, and Providers , 2000, Annals of Internal Medicine.

[139]  M. Barnett.  Effect of breaking bad news on patients' perceptions of doctors. , 2002, Journal of the Royal Society of Medicine.

[140]  M. Mcnicol,et al.  SURVIVAL AFTER CARDIAC ARREST IN HOSPITAL , 1977, The Lancet.

[141]  P. Butow,et al.  Lay constructions of decision‐making in cancer , 2002, Psycho-oncology.

[142]  R. Borland,et al.  Optimism and survival in lung carcinoma patients , 2004, Cancer.