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Quality versus quantity in end-of-life choices of cancer patients and support persons: a discrete choice experiment

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Abstract

Objectives

To explore in a sample of medical oncology outpatients and their nominated support persons (SPs): (1) the relative influence of pain, consciousness and life extension on end-of-life choices using a discrete choice experiment (DCE); (2) the extent to which SPs can predict the choices of index patients and (3) whether having a previous end-of-life discussion was associated with dyad agreement.

Methods

Adult medical oncology patients and their SPs were approached for consent to complete a survey containing a DCE. Participants chose between three unlabelled care scenarios characterised by three attributes: pain (mild, moderate or severe), consciousness (some, half or most of time) and extension of life (1, 2 or 3 weeks). Respondents selected (1) most-preferred and (2) least-preferred scenarios within each question. SPs answered the same questions but from patient’s perspective.

Results

A total of 110 patients and 64 SPs responded overall (42 matched patient-SP dyads). For patients, pain was the most influential predictor of most- and least-preferred scenarios (z = 12.5 and z = 12.9). For SPs, pain was the only significant predictor of most and least-preferred scenarios (z = 9.7 and z = 11.5). Dyad agreement was greater for choices about least- (69%) compared to most-preferred scenarios (55%). Agreement was slightly higher for dyads reporting a previous EOL discussion (68 versus 48%; p = 0.065).

Conclusion

Patients and SPs place significant value on avoiding severe pain when making end-of-life choices, over and above level of consciousness or life extension. People’s views about end-of-life scenarios they most as well as least prefer should be sought.

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References

  1. Rubin EB, Buehler AE, Halpern SD (2016) States worse than death among hospitalized patients with serious illnesses. JAMA Intern Med 176(10):1557–1559

    Article  PubMed  PubMed Central  Google Scholar 

  2. Fried TR, Byers AL, Gallo WT, Van Ness PH, Towle VR, O’Leary JR et al (2006) Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med 166(8):890–895

    Article  PubMed  PubMed Central  Google Scholar 

  3. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, Shortt S, Tranmer J, Lazar N, Kutsogiannis J, Lam M, Canadian Researchers End-of-Life Network(CARENET) (2006) What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ 174(5):627–633

    Article  PubMed  PubMed Central  Google Scholar 

  4. Bernacki RE, Block SD (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174(12):1994–2003

    Article  PubMed  Google Scholar 

  5. Raymont V, Bingley W, Buchanan A, David AS, Hayward P, Wessely S, Hotopf M (2004) Prevalence of mental incapacity in medical inpatients and associated risk factors: cross-sectional study. Lancet 364(9443):1421–1427

    Article  PubMed  Google Scholar 

  6. Waller A, Hall A, Sanson-Fisher R, Zdenkowski N, Douglas C, Walsh J (2018) Do medical oncology patients and their support persons agree about end of life issues? Intern Med J 48(1):60–66

  7. Bukki J, Unterpaul T, Nubling G, Jox RJ, Lorenzl S (2014) Decision making at the end of life—cancer patients’ and their caregivers’ views on artificial nutrition and hydration. Support Care Cancer 22(12):3287–3299

    Article  PubMed  CAS  Google Scholar 

  8. Hwang IC, Keam B, Kim YA, Yun YH (2016) Factors related to the differential preference for cardiopulmonary resuscitation between patients with terminal cancer and that of their respective family caregivers. Am J Hosp Palliat Care 33(1):20–26

    Article  PubMed  Google Scholar 

  9. Shalowitz DI, Garrett-Mayer E, Wendler D (2006) The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 166(5):493–497

    Article  PubMed  Google Scholar 

  10. Meier EA, Gallegos JV, Thomas LP, Depp CA, Irwin SA, Jeste DV (2016) Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry 24(4):261–271

    Article  PubMed  PubMed Central  Google Scholar 

  11. Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors. Intensive Care Medicine. 2003;29(9):1489–97

  12. White DB, Ernecoff N, Buddadhumaruk P, Hong S, Weissfeld L, Curtis JR, Luce JM, Lo B (2016) Prevalence of and factors related to discordance about prognosis between physicians and surrogate decision makers of critically ill patients. JAMA 315(19):2086–2094

    Article  PubMed  CAS  Google Scholar 

  13. Heyland DK, Heyland R, Dodek P, You JJ, Sinuff T, Hiebert T et al (2017) Discordance between patients’ stated values and treatment preferences for end-of-life care: results of a multicentre survey. BMJ Support Palliat Care 7(3):292–299

    PubMed  Google Scholar 

  14. Ryan M (2004) Discrete choice experiments in health care. BMJ 328(7436):360–361

    Article  PubMed  PubMed Central  Google Scholar 

  15. Louviere JJ (2001) Choice experiments: an overview of concepts and issues. The choice modelling approach to environmental valuation 13–36

  16. Lancsar E, Louviere J (2008) Conducting discrete choice experiments to inform healthcare decision making. PharmacoEconomics 26(8):661–677

    Article  PubMed  Google Scholar 

  17. Viney R, Lancsar E, Louviere J (2002) Discrete choice experiments to measure consumer preferences for health and healthcare

  18. Ryan M, Watson V, Amaya-Amaya M (2003) Methodological issues in the monetary valuation of benefits in healthcare. Expert Rev Pharmacoecon Outcomes Res 3(6):717–727

    Article  PubMed  Google Scholar 

  19. Viney R, Lancsar E, Louviere J (2002) Discrete choice experiments to measure consumer preferences for health and healthcare. Expert Rev Pharmacoecon Outcomes Res 2(4):319–326

    Article  PubMed  Google Scholar 

  20. Flynn TN, Louviere JJ, Peters TJ, Coast J (2007) Best–worst scaling: what it can do for health care research and how to do it. J Health Econ 26(1):171–189

    Article  PubMed  Google Scholar 

  21. Finkelstein EA, Bilger M, Flynn TN, Malhotra C (2015) Preferences for end-of-life care among community-dwelling older adults and patients with advanced cancer: a discrete choice experiment. Health Policy 119(11):1482–1489

    Article  PubMed  Google Scholar 

  22. Malhotra C, Farooqui MA, Kanesvaran R, Bilger M, Finkelstein E (2015) Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: a discrete choice experiment. Palliat Med 29(9):842–850

    Article  PubMed  Google Scholar 

  23. Hall J, Kenny P, Hossain I, Street DJ, Knox SA (2014) Providing informal care in terminal illness: an analysis of preferences for support using a discrete choice experiment. Med Decis Mak 34(6):731–745

    Article  Google Scholar 

  24. Jin X, Liu GG, Luo N, Li H, Guan H, Xie F (2016) Is bad living better than good death? Impact of demographic and cultural factors on health state preference. Qual Life Res 25(4):979–986

    Article  PubMed  Google Scholar 

  25. Shah KK, Tsuchiya A, Wailoo AJ (2015) Valuing health at the end of life: a stated preference discrete choice experiment. Soc Sci Med 124:48–56

    Article  PubMed  Google Scholar 

  26. Waller A, Sanson-Fisher R, Zdenkowski N, Douglas C, Hall AE, Walsh J (2018) The right place at the right time: medical oncology outpatients’ perceptions of location of end of life care. JNCCN 16(1):35–41

  27. Clark K (2017) Care at the very end-of-life: dying cancer patients and their chosen family’s needs. Cancers 9(2):11

    Article  PubMed Central  Google Scholar 

  28. Sun V, Borneman T, Piper B, Koczywas M, Ferrell B (2008) Barriers to pain assessment and management in cancer survivorship. J Cancer Surviv 2(1):65–71

    Article  PubMed  PubMed Central  Google Scholar 

  29. Ghandourh WA (2016) Palliative care in cancer: managing patients’ expectations. J Med Radiat Sci 63(4):242–257

    Article  PubMed  PubMed Central  Google Scholar 

  30. Care: CoItQoC (2013) Patient-centered communication and shared decision making. Delivering high-quality Cancer care: charting a new course for a system in crisis. National Academies Press (US), Washington

    Google Scholar 

  31. Oczkowski SJ, Chung HO, Hanvey L, Mbuagbaw L, You JJ (2016) Communication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysis. PLoS One 11(4):e0150671

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  32. Cardona-Morrell M, Benfatti-Olivato G, Jansen J, Turner RM, Fajardo-Pulido D, Hillman K (2017) A systematic review of effectiveness of decision aids to assist older patients at the end of life. Patient Educ Couns 100(3):425–435

    Article  PubMed  Google Scholar 

  33. Finucane AM, Lugton J, Kennedy C, Spiller JA (2017) The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review. Psychooncology 26(3):291–300

    Article  PubMed  Google Scholar 

  34. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300:1665–1673

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  35. Mack JW, Cronin A, Taback N, Huskamp HA, Keating NL, Malin JL, Earle CC, Weeks JC (2012) End-of-life discussions among patients with advanced cancer: a cohort study. Ann Intern Med 156(3):204–210

    Article  PubMed  PubMed Central  Google Scholar 

  36. Johnson S, Clayton J, Butow PN, Silvester W, Detering K, Hall J, Kiely BE, Cebon J, Clarke S, Bell ML, Stockler M, Beale P, Tattersall MHN (2016) Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial. BMJ Open 6(12):e012387

    Article  PubMed  PubMed Central  Google Scholar 

  37. Waller A, Dodd N, Tattersall MHN, Nair B, Sanson-Fisher R (2017) Improving hospital-based end of life care processes and outcomes: a systematic review of research output, quality and effectiveness. BMC Palliat Care 16(1):34

    Article  PubMed  PubMed Central  Google Scholar 

  38. Scott I 2013 Difficult but necessary conversations—the case for advance care planning. 199;10(662–666)

  39. Frost DW, Cook DJ, Heyland DK, Fowler RA (2011) Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: a systematic review. Crit Care Med 39(5):1174–1189

    Article  PubMed  Google Scholar 

  40. You JJ, Downar J, Fowler RA, Lamontagne F, Ma IW, Jayaraman D, Kryworuchko J, Strachan PH, Ilan R, Nijjar AP, Neary J, Shik J, Brazil K, Patel A, Wiebe K, Albert M, Palepu A, Nouvet E, des Ordons A, Sharma N, Abdul-Razzak A, Jiang X, Day A, Heyland DK, Canadian Researchers at the End of Life Network (2015) Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med 175:549–556

    Article  PubMed  Google Scholar 

  41. Bester J, Cole CM, Kodish E (2016) The limits of informed consent for an overwhelmed patient: clinicians’ role in protecting patients and preventing overwhelm. AMA J Ethics 18(9):869–886

    Article  PubMed  Google Scholar 

  42. Rodenbach RA, Brandes K, Fiscella K, Kravitz RL, Butow PN, Walczak A, Duberstein PR, Sullivan P, Hoh B, Xing G, Plumb S, Epstein RM (2017) Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists. J Clin Oncol 35(8):842–851

    Article  PubMed  PubMed Central  Google Scholar 

  43. Fagerlin A, Ditto PH, Danks JH, Houts RM, Smucker WD (2001) Projection in surrogate decisions about life-sustaining medical treatments. Health Psychol 20(3):166–175

    Article  PubMed  CAS  Google Scholar 

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Acknowledgements

The authors acknowledge research support from Lucy Boyd, Judy Hollingworth and Natalie Dodd. Our thanks to hospital staff, patients and families for their contribution to this research.

Funding

This research was supported by a National Health and Medical Research Council Partnership grant with the Cancer Council NSW (1059760), a Strategic Research Partnership Grant (CSR 11-02) from Cancer Council NSW to the Newcastle Cancer Control Collaborative (New-3C), and infrastructure funding from the Hunter Medical Research Institute. AW is supported by an Australian Research Council DECRA (150101262).

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Authors and Affiliations

  1. Health Behaviour Research Collaborative, Priority Research Centre for Health Behaviour, School of Medicine and Public Health, University of Newcastle, Callaghan, Australia

    Amy Waller, Rob Sanson-Fisher & Justin Walsh

  2. Hunter Medical Research Institute, New Lambton Heights, NSW, 2305, Australia

    Amy Waller, Rob Sanson-Fisher & Justin Walsh

  3. Department of Psychology, The University of Newcastle, University Drive, Callaghan, NSW, 2308, Australia

    Scott D. Brown & Laura Wall

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  1. Amy Waller
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  4. Laura Wall
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Corresponding author

Correspondence to Amy Waller.

Ethics declarations

The University of Newcastle Human Research Ethics Committee (H-2014-0411) and the ethics committee of the participating health service approved the study (14/11/19/4.04).

Conflict of interest

The authors declare that they have no conflict of interest.

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Waller, A., Sanson-Fisher, R., Brown, S.D. et al. Quality versus quantity in end-of-life choices of cancer patients and support persons: a discrete choice experiment. Support Care Cancer 26, 3593–3599 (2018). https://doi.org/10.1007/s00520-018-4226-x

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  • DOI: https://doi.org/10.1007/s00520-018-4226-x

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