A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer
Most cancer patients do not have an explicit discussion about prognosis and treatment despite documented adverse outcomes. Few decision aids have been developed to assist the difficult discussions of palliative management. We developed decision aids for people with advanced incurable breast, colorectal, lung, and hormone-refractory prostate cancers facing first-, second-, third-, and fourth-line chemotherapy.
Acknowledgments
This research was supported by VCU School of Medicine Research Year Out, GO8 LM0095259 from the National Library of Medicine (T. J. S., L. L., J. K.), and R01CA116227-01 (T. J. S.) from the National Cancer Institute.
References1
1 S.E. Harrington and T.J. Smith, The role of chemotherapy at the end of life: “when is enough, enough?”, JAMA 299 (22) (2008), pp. 2667–2678. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (42)
2 C.G. Koedoot, F.J. Oort, R.J. de Haan, P.J. Bakker, A. de Graeff and J.C. de Haes, The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are: Palliative chemotherapy and watchful-waiting, Eur J Cancer 40 (2) (2004), pp. 225–235. Article |
3 A.M. Sullivan, M.D. Lakoma, R.K. Matsuyama, L. Rosenblatt, R.M. Arnold and S.D. Block, Diagnosing and discussing imminent death in the hospital: a secondary analysis of physician interviews, J Palliat Med 10 (4) (2007), pp. 882–893. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (12)
4 C.K. Daugherty and F.J. Hlubocky, What are terminally ill cancer patients told about their expected deaths?: A study of cancer physicians' self-reports of prognosis disclosure, J Clin Oncol 26 (36) (2008), pp. 5988–5993. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (10)
5 A.A. Wright, B. Zhang, A. Ray, J.W. Mack, E. Trice, T. Balboni, S.L. Mitchell, V.A. Jackson, S.D. Block, P.K. Maciejewski and H.G. Prigerson, Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment, JAMA 300 (14) (2008), pp. 1665–1673. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (131)
6 B. Zhang, A.A. Wright, H.A. Huskamp, M.E. Nilsson, M.L. Maciejewski, C.C. Earle, S.D. Block, P.K. Maciejewski and H.G. Prigerson, Health care costs in the last week of life: associations with end-of-life conversations, Arch Intern Med 169 (5) (2009), pp. 480–488. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (47)
7 E.B. Lamont and N.A. Christakis, Prognostic disclosure to patients with cancer near the end of life, Ann Intern Med 134 (12) (2001), pp. 1096–1105. View Record in Scopus | Cited By in Scopus (166)
8 N. Christakis, Death Foretold: Prophecy and Prognosis in Medical Care, University of Chicago Press, Chicago (1999).
9 K.N. Swisher, D.L. Ulmer, W. Carpenter, R.B. Mitchell, T.H. Wan, M. Dowdy and T.J. Smith, Patient indemnification as a way to involve patients in economic decision-making about their care: barriers in the current system, Proc ASCO (1996), p. 939a.
10 L.A. Siminoff, N.H. Gordon, P. Silverman, T. Budd and P.M. Ravdin, A decision aid to assist in adjuvant therapy choices for breast cancer, Psychooncology 15 (11) (2006), pp. 1001–1013. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (26)
11 P.B. Peele, L.A. Siminoff, Y. Xu and P.M. Ravdin, Decreased use of adjuvant breast cancer therapy in a randomized controlled trial of a decision aid with individualized risk information, Med Decis Making 25 (3) (2005), pp. 301–307. View Record in Scopus | Cited By in Scopus (42)
12 T.J. Smith, Tell it like it is, J Clin Oncol 18; (2000), pp. 3441–3445. View Record in Scopus | Cited By in Scopus (17)
13 K. Herth, Abbreviated instrument to measure hope: development and psychometric evaluation, J Adv Nurs 17 (10) (1992), pp. 1251–1259. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (129)
14 I.J. Higginson and N. Donaldson, Relationship between three palliative care outcome scales, Health Qual Life Outcomes 2 (2004), p. 68.
15 M.A. Murray, T. Miller, V. Fiset, A. O'Connor and M.J. Jacobsen, Decision support: helping patients and families to find a balance at the end of life, Int J Palliat Nurs 10 (6) (2004), pp. 270–277. View Record in Scopus | Cited By in Scopus (13)
16 S.H. Woolf, E.C. Chan, R. Harris, S.L. Sheridan, C.H. Braddock 3rd, R.M. Kaplan, A. Krist, A.M. O'Connor and S. Tunis, Promoting informed choice: transforming health care to dispense knowledge for decision making, Ann Intern Med 143 (4) (2005), pp. 293–300. View Record in Scopus | Cited By in Scopus (102)
17 A.M. O'Connor, D. Stacey, V. Entwistle, H. Llewellyn-Thomas, D. Rovner, M. Holmes-Rovner, V. Tait, J. Tetroe, V. Fiset, M. Barry and J. Jones, Decision aids for people facing health treatment or screening decisions, Cochrane Database Syst Rev (2) (2003) CD001431.
18 Smith TJ, Dow LA, Virago E, Khatcheressian J, Lyckholm L, Matsuyama R. Giving honest information to patients with advanced cancer maintains hope. Oncologist (Williston Park) 24(6):521–525.
19 J.A. Tulsky, M.A. Chesney and B. Lo, How do medical residents discuss resuscitation with patients?, J Gen Intern Med 10 (8) (1995), pp. 436–442. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (132)
20 T.J. Smith, C.E. Desch, M.H. Hackney and J.E. Shaw, How long does it take to get a “do not resuscitate” order?, J Palliat Care 13 (1) (1997), pp. 5–8. View Record in Scopus | Cited By in Scopus (16)
21 T.J. Whelan and C.L. Loprinzi, Physician/patient decision aids for adjuvant therapy, J Clin Oncol 23 (2005), pp. 1627–1630. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (16)
22 T.M. Whelan, M.A. O'Brien and M. Villasis-Keever et al., Impact of Cancer-Related Decision Aids. Evidence Report/Technology Assessment Number 46. (Prepared by McMaster University under contract no. 290-97-0017.), Agency for Healthcare Research and Quality, Rockville, MD (2002) AHRQ Publication 02-E004.
23 B.R. Cassileth, M.S. Soloway and N.J. Vogelzang et al., Patients' choice of treatment in stage D prostate cancer, Urology 33 (suppl 5) (1989), pp. S57–S62.
24 D.J. Chadwick, D.A. Gillatt and J.C. Gingell, Medical or surgical orchidectomy: The patients' choice, BMJ 302 (1991), p. 572. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (18)
25 L.M. Elit, M.N. Levine and A. Gafni et al., Patients' preferences for therapy in advanced epithelial ovarian cancer: Development, testing, and application of a bedside decision instrument, Gynecol Oncol 62 (1996), pp. 329–335. Abstract |
26 V. Fiset, A.M. O'Connor and W. Evans et al., Development and evaluation of a decision aid for patients with stage IV non-small cell lung cancer, Health Expect 3 (2000), pp. 125–136. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (26)
27 M.D. Brundage, D. Feldman-Steward and R. Cosby et al., Cancer patients' attitudes toward treatment options for advanced non-small cell lung cancer: Implications for patient education and decision support, Patient Educ Couns 45 (2001), pp. 149–157. Article |
28 M.D. Brundage, D. Feldman-Stewart and R. Cosby et al., Phase I study of a decision aid for patients with locally advanced non-small-cell lung cancer, J Clin Oncol 19 (2001), pp. 1326–1335. View Record in Scopus | Cited By in Scopus (27)
29 K.S. Chiew, H. Shepherd, J. Vardy, M.H. Tattersall, P.N. Butow and N.B. Leighl, Development and evaluation of a decision aid for patients considering first-line chemotherapy for metastatic breast cancer, Health Expect 11 (1) (2008), pp. 35–45. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (4)
30 W.J. Mackillop, W.E. Stewart, A.D. Ginsburg and S.S. Stewart, Cancer patients' perceptions of their disease and its treatment, Br J Cancer 58 (1988), pp. 355–358. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (148)
31 E. Chow, L. Andersson, R. Wong, M. Vachon, G. Hruby and E. Franssen et al., Patients with advanced cancer: a survey of the understanding of their illness and expectations from palliative radiotherapy for symptomatic metastases, Clin Oncol (R Coll Radiol) 13 (2001), pp. 204–208. Abstract |
32 A.K. Ganti, S.J. Lee, J.M. Vose, M.P. Devetten, R.G. Bociek, J.O. Armitage, P.J. Bierman, L.J. Maness, E.C. Reed and F.R. Loberiza Jr, Outcomes after hematopoietic stem-cell transplantation for hematologic malignancies in patients with or without advance care planning, J Clin Oncol 25 (35) (2007), pp. 5643–5648. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (9)
33 S.J. Lee, D. Fairclough, J.H. Antin and J.C. Weeks, Discrepancies between patient and physician estimates for the success of stem cell transplantation, JAMA 285 (8) (2001), pp. 1034–1038. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (34)
34 S.J. Lee, F.R. Loberiza, J.D. Rizzo, R.J. Soiffer, J.H. Antin and J.C. Weeks, Optimistic expectations and survival after hematopoietic stem cell transplantation, Biol Blood Marrow Transplant 9 (2003), pp. 389–396. Article |
35 J.C. Weeks, E.F. Cook, S.J. O'Day, L.M. Peterson, N. Wenger and D. Reding et al., Relationship between cancer patients' predictions of prognosis and their treatment preferences, JAMA 279 (21) (1998), pp. 1709–1714. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (350)
36 C.C. Earle, B.A. Neville, M.B. Landrum, J.Z. Ayanian, S.D. Block and J.C. Weeks, Trends in the aggressiveness of cancer care near the end of life, J Clin Oncol 22 (2) (2004), pp. 315–321. View Record in Scopus | Cited By in Scopus (185)
37 R. Matsuyama, S.N. Reddy and T.J. Smith, Why do patients choose chemotherapy near the end of life?, J Clin Oncol 24 (2006), pp. 1–7.
38 A. Dufresne, X. Pivot, C. Tournigand, T. Facchini, T. Altweegg, L. Chaigneau and A. De Gramont, Impact of chemotherapy beyond the first line in patients with metastatic breast cancer, Breast Cancer Res Treat 107 (2) (2008), pp. 275–279. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (14)
39 P. Kirk, I. Kirk and L.J. Kristjanson, What do patients receiving palliative care for cancer and their families want to be told?: A Canadian and Australian qualitative study, BMJ 328 (7452) (2004), p. 1343. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (110)
40 L.L. Emanuel, F.D. Ferris, C.F. von Gunten and J. Von Roenn, EPEC-O: Education in Palliative and End of Life Care for Oncology, EPEC Project, Chicago (2005).
41 M.J. Field and C.K. Cassel, Approaching Death: Improving Care at the End of Life, National Academy Press, Washington DC (1997), pp. 59–64.
42 H.A. Huskamp, N.L. Keating, J.L. Malin, A.M. Zaslavsky, J.C. Weeks, C.C. Earle, J.M. Teno, B.A. Virnig, K.L. Kahn, Y. He and J.Z. Ayanian, Discussions with physicians about hospice among patients with metastatic lung cancer, Arch Intern Med 169 (10) (2009), pp. 954–962. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (4)
43 P. Glare, K. Virik, M. Jones, M. Hudson, S. Eychmuller and J. Simes et al., A systematic review of physicians' survival predictions in terminally ill cancer patients, BMJ 327 (2003), pp. 195–200.
44 T. Smith and K. Swisher, Telling the truth about terminal cancer, JAMA 279 (21) (1998), pp. 1746–1748. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (37)
45 T. Beauchamp and J. Childress, Principles of Biomedical Ethics (5th ed), Oxford University Press, New York (2001).
46 E. Panagopoulou, G. Mintziori, A. Montgomery, D. Kapoukranidou and A. Benos, Concealment of information in clinical practice: is lying less stressful than telling the truth?, J Clin Oncol 26 (7) (2008), pp. 1175–1177. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (9)
47 L. Fallowfield and V. Jenkins, Communicating sad, bad, and difficult news in medicine, Lancet 363 (9405) (2004), pp. 312–319. Article |
48 L.A. Dow, R.K. Matsuyama, V. Ramakrishnan, L. Kuhn, E.B. Lamont, L. Lyckholm and T.J. Smith, Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives, J Clin Oncol 28 (2) (2010), pp. 299–304. Full Text via CrossRef | View Record in Scopus | Cited By in Scopus (2)
