Eliciting and integrating patients' preferences in decision-making in palliative oncology is an important criterion for the quality of end-of-life care. It is an essential prerequisite in supporting the integrity of patients' decision-making process, enhancing patients' right to self-determination and facilitating patients' autonomy. In this review we summarize the data on: (1) patients' preference for a decisional model in advanced cancer, (2) patients' preferences for quality versus length of life and the enrollment of patients in early-phase clinical studies, and (3) preferences for caregiver involvement in decision-making. Timely assessment of patients' preferences enables advance care planning with respect to considering patients' values, discussing therapy goals and planning for patients' end-of-life care. It helps avoiding overtreatment near the end of life and giving care that is aligned to patients' wishes and family capacities.

Journal Section:
Review Article
Keywords:
End of life decision-making, Ethics, Patients’ preferences
1.
Gaston CM, Mitchell G: Information giving and decision-making in patients with advanced cancer: A systematic review. Soc Sci Med 2005;61:2252-2264.
2.
Daher M: Ethical issues in the geriatric patient with advanced cancer ‘living to the end'. Ann Oncol 2013;24(Suppl 7):vii55-vii58.
3.
Rietjens JA, van der Heide A, Voogt E, et al.: Striving for quality or length at the end-of-life: attitudes of the Dutch general public. Patient Educ Couns 2005;59:158-163.
4.
Oczkowski SJ, Chung HO, Hanvey L, et al.: Communication tools for end-of-life decision-making in ambulatory care settings: A systematic review and meta-analysis. PLoS One 2016;11:e0150671.
5.
Bestvina CM, Polite BN: Implementation of advance care planning in oncology: A review of the literature. J Oncol Pract 2017;13:657-662.
6.
Ferrell BR, Temel JS, Temin S, et al.: Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. J Clin Oncol 2017;35:96-112.
7.
Wright AA, Zhang B, Ray A, et al.: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-1673.
8.
Hofmann JC, Wenger NS, Davis RB, et al.: Patient preferences for communication with physicians about end-of-life decisions. Ann Inter Med 1997;127:1-12.
9.
Henselmans I, Van Laarhoven HW, Van der Vloodt J, et al.: Shared decision making about palliative chemotherapy: A qualitative observation of talk about patients' preferences. Palliat Med 2017;31:625-633.
10.
Tricou C, Yennu S, Ruer M, et al.: Decisional control preferences of patients with advanced cancer receiving palliative care. Palliat Support Care 2018;16:544-551.
11.
Yennurajalingam S, Rodrigues LF, Shamieh OM, et al.: Decisional control preferences among patients with advanced cancer: An international multicenter cross-sectional survey. Palliat Med 2018;32:870-880.
12.
Kutner JS, Vu KO, Prindiville SA, Byers TE: Patient age and cancer treatment decisions. Patient and physician views. Cancer Pract 2000;8:114-119.
13.
Wallace CL: Family communication and decision making at the end of life: A literature review. Palliat Support Care 2015;13:815-825.
14.
Hobbs GS, Landrum MB, Arora NK, et al.: The role of families in decisions regarding cancer treatments. Cancer 2015;121:1079-1087.
15.
Pardon K, Deschepper R, Vander Stichele R, et al.: Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: A multicenter study in 13 hospitals in Flanders, Belgium. J Pain Symptom Manage 2012;43:515-526.
16.
Brom L, Pasman HR, Widdershoven GA, et al.: Patients' preferences for participation in treatment decision-making at the end of life: Qualitative interviews with advanced cancer patients. PLoS One 2014;9:e100435.
17.
Sulmasy DP, Hughes MT, Thompson RE, et al.: How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. J Am Geriatr Soc 2007;55:1981-1988.
18.
Royak-Schaler R, Gadalla S, Lemkau J, et al.: Family perspectives on communication with healthcare providers during end-of-life cancer care. Oncol Nurs Forum 2006;33:753-760.
19.
Belanger E, Rodriguez C, Groleau D: Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliat Med 2011;25:242-261.
20.
Gaston CM, Mitchell G: Information giving and decision-making in patients with advanced cancer: A systematic review. Soc Sci Med 2005;61:2252-2264.
21.
Hubbard G, Kidd L, Donaghy E: Preferences for involvement in treatment decision making of patients with cancer: A review of the literature. Eur J Oncol Nurs 2008;12:299-318.
22.
Nolan MT, Hughes M, Narendra DP, et al.: When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. J Pain Symptom Manage 2005;30:342-353.
23.
Rothenbacher D, Lutz MP, Porzsolt F: Treatment decisions in palliative cancer care: Patients' preferences for involvement and doctors' knowledge about it. Eur J Cancer 1997;33:1184-1189.
24.
Grunfeld EA, Maher EJ, Browne S, et al.: Advanced breast cancer patients' perceptions of decision making for palliative chemotherapy. J Clin Oncol 2006;24:1090-1098.
25.
Winkler EC, Schildmann J: Palliative care for patients participating in experimental or clinical oncology studies; in Alt-Epping B, Nauck F (eds): Palliative Care in Oncology. Springer, Berlin, 2015, pp 283-295.
26.
Ellis EM, Varner A: Unpacking cancer patients' preferences for information about their care. J Psychosoc Oncol 2018;36:1-18.
27.
Winkler EC, Reiter-Theil S, Lange-Riess D, et al.: Patient involvement in decisions to limit treatment: The crucial role of agreement between physician and patient. J Clin Oncol 2009;27:2225-2230.
28.
Pardon K, Deschepper R, Vander Stichele R, et al.: Are patients' preferences for information and participation in medical decision-making being met? Interview study with lung cancer patients. Palliat Med 2011;25:62-70.
29.
Stiggelbout AM, de Haes JC, Kiebert GM, et al.: Tradeoffs between quality and quantity of life: Development of the QQ Questionnaire for Cancer Patient Attitudes. Med Decis Making 1996;16:184-192.
30.
Koedoot CG, de Haan RJ, Stiggelbout AM, et al.: Palliative chemotherapy or best supportive care? A prospective study explaining patients' treatment preference and choice. Br J Cancer 2003;89:2219-2226.
31.
Voogt E, van der Heide A, Rietjens JA, et al.: Attitudes of patients with incurable cancer toward medical treatment in the last phase of life. J Clin Oncol 2005;23:2012-2019.
32.
Laryionava K, Sklenarova H, Heußner P, et al.: Cancer patients' preferences for quantity or quality of life: German translation and validation of the quality and quantity questionnaire. Oncol Res Treat 2014;37:472-478.
33.
Meropol NJ, Weinfurt KP, Burnett CB, et al.: Perceptions of patients and physicians regarding phase I cancer clinical trials: implications for physician-patient communication. J Clin Oncol 2003;21:2589-2596.
34.
Jenkins V, Solis-Trapala I, Langridge C, et al.: What oncologists believe they said and what patients believe they heard: An analysis of phase I trial discussions. J Clin Oncol 2011;29:61-68.
35.
Joffe S, Cook EF, Cleary PD, et al.: Quality of informed consent in cancer clinical trials: A cross-sectional survey. Lancet 2001;358:1772-1777.
36.
Meropol NJ, Egleston BL, Buzaglo JS, et al.: Cancer patient preferences for quality and length of life. Cancer 2008;113:3459-3466.
37.
Winkler EC, Hiddemann W, Marckmann G: Ethical assessment of life-prolonging treatment. Lancet Oncol 2011;12:720-722.
38.
Mack JW, Weeks JC, Wright AA, et al.: 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.
39.
Temel JS, Greer JA, Muzikansky A, et al.: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742.
40.
Schafer C, Putnik K, Dietl B, et al.: Medical decision-making of the patient in the context of the family: Results of a survey. Support Care Cancer 2006;14:952-959.
41.
Heyland DK, Cook DJ, Rocker GM, et al.: Decision-making in the ICU: Perspectives of the substitute decision-maker. Intensive Care Med 2003;29:75-82.
42.
Lin JJ, Smith CB, Feder S, et al.: Patients' and oncologists' views on family involvement in goals of care conversations. Psychooncology 2018;27:1035-1041.
43.
Cherlin E, Fried T, Prigerson HG, et al.: Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? J Palliat Med 2005;8:1176-1185.
44.
Hauke D, Reiter-Theil S, Hoster E, et al.: The role of relatives in decisions concerning life-prolonging treatment in patients with end-stage malignant disorders: Informants, advocates or surrogate decision-makers? Ann Oncol 2011;22:2667-2674.
45.
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.
46.
Dionne-Odom JN, Azuero A, Lyons KD, et al.: Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III randomized controlled trial. J Clin Oncol 2015;33:1446-1452.
47.
Lipson A, Douglas S, Daly B: Preferences for quality or length of life: An analysis of patients with advanced cancer and their family caregivers prior to death (S715). J Pain Symptom Manage 2017;53:417-418.
48.
Zekri J, Karim SM: Breaking cancer bad news to patients with cancer: A comprehensive perspective of patients, their relatives, and the public—example from a middle eastern country. J Glob Oncol 2016;2:268-274.
49.
Petersen GS, Knudsen JL, Vinter MM: Cancer patients' preferences of care within hospitals: A systematic literature review. Int J Qual Health Care 2015;27:384-395.
50.
Lim RBL: End-of-life care in patients with advanced lung cancer. Ther Adv Respir Dis 2016;10:455-467.
51.
Laryionava K, Heußner P, Hiddemann W, Winkler EC: Framework for timing of the discussion about forgoing cancer-specific treatment based on a qualitative study with oncologists. Support Care Cancer 2015;23:715-721.
52.
Muller-Engelmann M, Donner-Banzhoff N, Keller H, et al.: When decisions should be shared: A study of social norms in medical decision making using a factorial survey approach. Med Decis Making 2013;33:37-47.
53.
Barry, M.J. and S. Edgman-Levitan, Shared decision making-pinnacle of patient-centered care. N Engl J Med 2012;366:780-781.
54.
Munthe C, Sandman L, Cutas D: Person centred care and shared decision making: Implications for ethics, public health and research. Health Care Anal 2012;20:231-249.
© 2019 S. Karger AG, Basel
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
2019
You do not currently have access to this content.