The last year of life is one of the most resource-intensive stages of cancer care,1 and one in which people face difficult care decisions.2 Inaccurate perceptions about prognosis or treatments can impair decision-making processes.3,4 Previous studies have indicated that patients with cancer are receiving increasingly aggressive care at the end of life (EOL), including receipt of chemotherapy in the last month of life, late referrals to hospice, and frequent emergency department (ED) visits, hospitalizations, and intensive care unit admissions.5–8 Such care may produce poorer outcomes,9 particularly when care is in direct contrast to patient wishes. For instance, many patients wish to die at home, yet many die in hospital,10,11 which can lead to higher rates of unwanted aggressive treatment and poor symptom management.
For patients to get the care they want at EOL, their wishes must be known to those involved in care decision-making and delivery.12,13 Advance care planning (ACP) is a process whereby individuals consider, discuss, and document their values, wishes, and preferences about future medical care in case they later experience loss of capacity.12,14 ACP requires explicit discussions about the inevitability of death, prognosis, and the likely trajectory of illness. People can legally appoint substitute decision-makers (referred to as enduring guardians throughout) and record wishes in written documents, such as an advance care directive or care plan.15 Completed appropriately, ACP has been shown to reduce stress, anxiety, and depression.12 It has also been associated with less unwanted aggressive medical care and lower healthcare costs.9,16
Despite these potential benefits, those involved in the care of patients with cancer report difficulties in knowing when, how, and with whom to initiate these conversations.17,18 The reported proportion of patients with advanced cancer who engage in EOL discussions varies, with some reporting <40%9,19 and others as high as 73%.20,21 Most of these conversations begin in the final weeks of life, in the context of hospital admissions or ED visits.20 Furthermore, documentation of a person's EOL wishes is often limited.20 The extent to which this corresponds with patient preferences remains unclear. Of the 40 published studies in a recent systematic review exploring ACP in oncology populations,17 most were conducted in the United States and relied primarily on qualitative data. Only 5 of 14 studies examined outpatient preferences quantitatively, with limited information about the determinants of ACP participation,17 the manner in which patients wanted EOL wishes conveyed, or the content of discussions, emphasizing the need for methodologically rigorous research examining the patient perspective about this range of issues.
This study aimed to determine in a sample of medical oncology outpatients: (1) the proportion who have already discussed and documented EOL wishes; (2) when and with whom patients would prefer to convey their EOL wishes; (3) the EOL issues patients would want to be asked about; and (4) the association between perceived cancer status and participation in ACP .
The authors wish to thank the hospital staff, patients, and families for their contribution to this research.
The authors have disclosed that they have no financial interests, arrangements, affiliations, or commercial interests with the manufacturers of any products discussed in this article or their competitors.
The authors received research support from Lucy Boyd, Judy Hollingworth, and Natalie Dodd; infrastructure support from University of Newcastle and HMRI; and funding from the National Health and Medical Research Council and The Cancer Council NSW.
Yabroff KR, Lund J, Kepka D, Mariotto A. Economic burden of cancer in the United States: estimates, projections, and future research. Cancer Epidemiol Biomarkers Prev 2011;20:2006–2014.
Langton JM, Srasuebkul P, Reeve R. Resource use, costs and quality of end-of-life care: observations in a cohort of elderly Australian cancer decedents. Implement Sci 2015;10:25.
Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002;346:1061–1066.
Hagerty RG, Butow PN, Ellis PM. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol 2005;16:1005–1053.
Earle CC, Landrum MB, Souza JM. Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J Clin Oncol 2008;26:3860–3866.
Ho TH, Barbera L, Saskin R. Trends in the aggressiveness of end-of-life cancer care in the universal health care system of Ontario, Canada. J Clin Oncol 2011;29:1587–1591.
Warren JL, Barbera L, Bremner KE. End-of-life care for lung cancer patients in the United States and Ontario. J Natl Cancer Inst 2011;103:853–862.
Philip J, Hudson P, Bostanci A. Metastatic non-small cell lung cancer: a benchmark for quality end-of-life cancer care? Med J Aust 2015;202:139–143.
Wright AA, Zhang B, Ray A. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665–1673.
Bekelman JE, Halpern SD, Blankart CR. Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA 2016;315:272–283.
Higginson IJ, Sarmento VP, Calanzani N. Dying at home—is it better: a narrative appraisal of the state of the science. Palliat Med 2013;27:918–924.
Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345.
Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med 2010;362:1211–1218.
Tilse C, Wilson J, White B. Having the Last Word? Will Making and Contestation in Australia. Queensland, Australia; University of Queensland: 2015. Available at: https://www.ptg.act.gov.au/images/pdf/having-the-last-word.pdf. Accessed April 11, 2018.
Purser KJ, Rosenfeld T. Evaluation of legal capacity by doctors and lawyers: the need for collaborative assessment. Med J Aust 2014;201:483–485.
Zhang B, Wright AA, Huskamp HA. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 2009;169:480–488.
Johnson S, Butow P, Kerridge I, Tattersall M. Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology 2016;25:362–386.
Mack JW, Weeks JC, Wright AA. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 2010;28:1203–1208.
Mack JW, Cronin A, Taback N. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med 2012;156:204–210.
Narang AK, Wright AA, Nicholas LH. Trends in advance care planning in patients with cancer: results from a national longitudinal survey. JAMA Oncol 2015;1:601–608.
Waller A, Hall A, Sanson-Fisher R. Do medical oncology patients and their support persons agree about end of life issues? Intern Med J 2018;48:60–66.
Waller A, Sanson-Fisher R, Zdenkowski N. The right place at the right time: medical oncology outpatients' perceptions of location of end of life care. J Natl Compr Canc Netw 2018;16:35–41.
Pardon K, Deschepper R, Vander Stichele R. Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients. Support Care Cancer 2012;20:2473–2482.
Heyland DK, Allan DE, Rocker G. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care. Open Med 2009;3:e101–110.
Bernacki RE, Block SDAmerican College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014;174:1994–2003.
Kuluski K, Gill A, Naganathan G. A qualitative descriptive study on the alignment of care goals between older persons with multi-morbidities, their family physicians and informal caregivers. BMC Fam Pract 2013;14:133.
Weeks JC, Catalano PJ, Cronin A. Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012;367:1616–1625.
Zucca A, Sanson-Fisher R, Waller A. Does screening for physical and psychosocial symptoms vary between medical oncology treatment centres? Psychooncology 2016;25:521–528.
Hudson P, Quinn K, O'Hanlon B, Aranda S. Family meetings in palliative care: multidisciplinary clinical practice guidelines. BMC Palliat Care 2008;7:12.
Auriemma CL, Nguyen CA, Bronheim R. Stability of end-of-life preferences: a systematic review of the evidence. JAMA Intern Med 2014;174:1085–1092.
Zucca AC, Sanson-Fisher RW, Waller A. Life expectancy discussions in a multisite sample of Australian medical oncology outpatients. Med J Aust 2015;203:405.
Mackenzie LJ, Carey ML, Paul CL. Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure. Psychooncology 2013;22:2720–2728.
Epstein AS, Prigerson HG, O'Reilly EM, Maciejewski PK. Discussions of life expectancy and changes in illness understanding in patients with advanced cancer. J Clin Oncol 2016;34:2398–2403.
Uitterhoeve RJ, Bensing JM, Grol RP. The effect of communication skills training on patient outcomes in cancer care: a systematic review of the literature. Eur J Cancer Care (Engl) 2010;19:442–457.
Rodenbach RA, Brandes K, Fiscella K. Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists. J Clin Oncol 2017;35:842–851.
Sudore RL, Boscardin J, Feuz MA. Effect of the PREPARE website vs an easy-to-read advance directive on advance care planning documentation and engagement among veterans: a randomized clinical trial. JAMA Intern Med 2017;177:1102–1109.
Epstein RM, Duberstein PR, Fenton JJ. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. JAMA Oncol 2017;3:92–100.
Rubin EB, Buehler AE, Halpern SD. States worse than death among hospitalized patients with serious illnesses. JAMA Intern Med 2016;176:1557–1559.