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PharmacoEconomics - Open

, Volume 2, Issue 2, pp 93–95 | Cite as

Raise the Bar, Not the Threshold Value: Meeting Patient Preferences for Palliative and End-of-Life Care

  • Nikki McCaffrey
  • Simon Eckermann
Open Access
Editorial

Despite increasing interest in economic evaluation of palliative and end-of-life care, research on patients’ preferences and values to robustly inform such analysis in this setting is relatively scarce. In a recent Special Issue of Palliative Medicine on the economics of palliative and end-of-life care just one article focused on this controversial topic [1].

In large part this may be due to the complexities of palliative care, which aims to improve “the quality of life of patients and families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [2]. Clearly, palliative care is multidimensional and people value domains above and beyond health status. There is utility from the dying process; people have preferences for their place of care and place of death along the dying trajectory [3, 4] and derive benefit from preparing themselves and others for their impending death [5, 6]. Further, reducing families’ and carers’ distress and improving their well-being are integral aspects of care. People also value aspects such as not being a burden on family and friends, and receiving high-quality healthcare as much as, or even more than, improvements in health status or extension of life when receiving palliative care [7, 8].

Yet, clinicians and decision makers don’t always accord the same value to these patient preferences [9]. Nearly two decades ago, Steinhauser and colleagues [9] demonstrated that aspects of care critical to patients and their families, such as having funeral arrangements in place and not being a burden, weren’t considered important by many physicians. More recently, Miyashita and colleagues [10] reported 91% (n = 310) of cancer patients rated “receiving consistent care from the same physician and nurse” as an attribute of a good death compared with just under half of oncologists.

Conventional survival- and quality-of-life-based evaluations routinely fail to even consider these preferences, misrepresenting patient and family priorities. Critically, such misaligned valuation can lead to inappropriate and inefficient use of expensive, suboptimal interventions and processes of death that fail to reflect key patient, family or societal preferences and needs. For example, clinical, public policy and economic evidence synthesis points to the use of medicinal cannabis for treating pain, the most common palliative care symptom, rather than much more commonly prescribed opioid-based therapies or ketamine [11, 12, 13]. Importantly, medicinal cannabis also appears to satisfy patient and family needs to finalise their affairs, remain in the community of choice and reduce family and carer distress [11, 12, 14].

The most commonly used measure in conventional cost-effectiveness analysis is the quality-adjusted life-years (QALYs) [15], which typically focuses on health alone as the sole indicator of value and does not cover key patient-valued domains in palliative care relating to finalising personal and financial affairs, process and place of death, and family and carer distress [5]. Consequently, capturing and valuing the multiple key domains of effect within conventional cost-effectiveness analysis in this setting is fraught with ethical (individual) and moral (community) dilemmas and challenges. Further, communities wish to support people’s preferences for palliative and end-of-life care [16, 17]. However, such public support should not be misinterpreted as a call for higher threshold values for QALYs in this population [18], but rather as support for valuing key palliative care domains [3, 4, 5, 6].

Evidence of community support for any preferential funding of palliative and end-of-life care is, at best, mixed [18, 19, 20, 21]. Rather, efforts should be made to improve the coverage of domains important to palliative and end-of-life populations in health economic analysis to better inform societal decision-making [6, 22]. For example, Dzingina and colleagues [23] are developing a condition-specific preference-based measure from the Palliative Outcome Scale (POS), a validated and widely applied palliative care outcome measure, suitable for cost-utility analyses of palliative care interventions, which includes important, patient-valued domains such as quality of care [24, 25].

Despite this progress, some highly valued aspects of care, such as where healthcare services are delivered, are not amenable to integration with survival time in a QALY-type measure. Consequently, much more work is needed on developing alternatives to conventional methods to address these challenges, including greater deliberation on the appropriate philosophical framework [26]. Burgeoning progress is being made through the capability approach, a broader evaluative framework focusing on what a person is able to do and who they are able to be [26, 27]. The ICEpop CAPability-Supportive Care Measure (ICECAP-SCM), a capability well-being instrument, is being developed to assess whether people have the opportunity for a good death [28]. This preference-based measure, intended for use in the evaluation of palliative and supportive care interventions, has seven attributes (having a say, being with people who care about you, physical suffering, emotional suffering, dignity, being supported, being prepared) and work is currently underway to explore how people value these attributes [29]. Further, multi-criteria decision analysis [30, 31], discrete choice experiments [32, 33] and innovative methods, such as multiple outcomes cost-effectiveness analysis [34], offer promising alternatives to traditional methods in this space.

Such methods enable joint consideration of multiple key palliative care domains that reflect patient preferences, which is crucial for identifying and optimising appropriate palliative strategies, processes and outcomes. People with a life-limiting illness receiving palliation want strategies and therapies that enable them to finalise their personal and financial affairs, stay in their community of choice for end-of-life care and their place of choice for death (often, but not always, the same [3]), and reduce distress and burden to their families, friends and carers [3, 4, 5, 6].

Quite simply, we need to raise the bar, not the threshold value.

Notes

Compliance with Ethical Standards

Funding

No funding was received for this paper.

Conflict of interest

Nikki McCaffrey and Simon Eckermann declare no conflicts of interest.

References

  1. 1.
    McCaffrey N, Cassel JB, Coast J. An economic view on the current state of the economics of palliative and end-of-life care. Palliat Med. 2017;31(4):291–2.CrossRefPubMedGoogle Scholar
  2. 2.
    Welfare AIoHa. Palliative care services in Australia 2014. Cat. no. HWI 128. Canberra: AIHW; 2014.Google Scholar
  3. 3.
    Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP. Preference for place of care and place of death in palliative care: are these different questions? Palliat Med. 2008;22(7):787–95.CrossRefPubMedGoogle Scholar
  4. 4.
    Gomes B, Calanzani N, Gysels M, Hall S, Higginson I. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013;12(1):7.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Eckermann S, McCaffrey N. Beyond the individual: evaluating community-based health promotion and prevention strategies and palliative care. In: Eckermann S, editor. Health economics from theory to practice: optimally informing joint decisions of research, reimbursement and regulation with health system budget constraints and community objectives. London: ADIS; 2017.CrossRefGoogle Scholar
  6. 6.
    McCaffrey N, Bradley S, Ratcliffe J, Currow DC. What aspects of quality of life are important from palliative care patients’ perspectives? A systematic review of qualitative research. J Pain Symptom Manage. 2016;52(2):318.e5–328.e5.CrossRefGoogle Scholar
  7. 7.
    Malhotra C, Farooqui MA, Kanesvaran R, Bilger M, Finkelstein E. Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: a discrete choice experiment. Palliat Med. 2015;29(9):842–50.CrossRefPubMedGoogle Scholar
  8. 8.
    Finkelstein EA, Bilger M, Flynn TN, Malhotra C. Preferences for end-of-life care among community-dwelling older adults and patients with advanced cancer: a discrete choice experiment. Health Policy. 2015;119(11):148–9.CrossRefGoogle Scholar
  9. 9.
    Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.CrossRefPubMedGoogle Scholar
  10. 10.
    Miyashita M, Kawakami S, Kato D, Yamashita H, Igaki H, Nakano K, et al. The importance of good death components among cancer patients, the general population, oncologists, and oncology nurses in Japan: patients prefer “fighting against cancer”. Support Care Cancer. 2015;23(1):103–10.CrossRefPubMedGoogle Scholar
  11. 11.
    Carter GT, Flanagan AM, Earleywine M, Abrams DI, Aggarwal SK, Grinspoon L. Cannabis in palliative medicine: improving care and reducing opioid-related morbidity. Am J Hosp Palliat Care. 2011;28(5):297–303.CrossRefPubMedGoogle Scholar
  12. 12.
    USA National Academy of Science. The health effects of cannabis and cannabinoids: the current state of evidence and recommendations for research. Washington, DC: The National Academic Press; 2017. doi: 10.17226/24625. Accessed 21 June 2017.
  13. 13.
    Hardy J, Quinn S, Fazekas B, Plummer J, Eckermann S, Agar M, et al. A randomised, double-blind placebo controlled study to assess the efficacy and toxicity of subcutaneous ketamine in the management of cancer pain. J Clin Oncol. 2012;30(29):3611–7.CrossRefPubMedGoogle Scholar
  14. 14.
    Luckett T, Phillips J, Lintzeris N, Allsop D, Lee J, Solowij N, et al. Clinical trials of medicinal cannabis for appetite-related symptoms from advanced cancer: a survey of preferences, attitudes and beliefs among patients willing to consider participation. Intern Med J. 2016;46(11):1269–75.CrossRefPubMedGoogle Scholar
  15. 15.
    McCaffrey N, Kaambwa B, Currow DC, Ratcliffe J. Health-related quality of life measured using the EQ-5D–5L: South Australian population norms. Health Qual Life Outcomes. 2016;14(1):133.CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Pinto-Prades J-L, Sánchez-Martínez F-I, Corbacho B, Baker R. Valuing QALYs at the end of life. Soc Sci Med. 2014;113:5–14.CrossRefPubMedGoogle Scholar
  17. 17.
    Gu Y, Lancsar E, Ghijben P, Butler JRG, Donaldson C. A systematic review of what counts and to what extent. Soc Sci Med. 2015;146:41–52.CrossRefPubMedGoogle Scholar
  18. 18.
    Wouters S, van Exel J, Baker R, Brouwer WBF. Priority to end of life treatments? Views of the public in the Netherlands. Value Health. 2017;20(1):107–17.CrossRefPubMedGoogle Scholar
  19. 19.
    Shah KK, Tsuchiya A, Wailoo AJ. Valuing health at the end of life: a stated preference discrete choice experiment. Soc Sci Med. 2015;124:48–56.CrossRefPubMedGoogle Scholar
  20. 20.
    McHugh N, Baker RM, Mason H, Williamson L, van Exel J, Deogaonkar R, et al. Extending life for people with a terminal illness: a moral right and an expensive death? Exploring societal perspectives. BMC Med Eth. 2015;16:14.CrossRefGoogle Scholar
  21. 21.
    Shah K, Tsuchiya A, Wailoo A. Valuing health at the end of life: an empirical study of public preferences. Eur J Health Econ. 2014;15(4):389–99.CrossRefPubMedGoogle Scholar
  22. 22.
    Round J. Is a QALY still a QALY at the end of life? J Health Econ. 2012;31(3):521–7.CrossRefPubMedGoogle Scholar
  23. 23.
    Dzingina M, Higginson IJ, McCrone P, Murtagh FEM. Development of a patient-reported palliative care-specific health classification system: the POS-E. Patient. 2017;10(3):353–65.CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999;8(4):219–27.CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Collins ES, Witt J, Bausewein C, Daveson BA, Higginson IJ, Murtagh FEM. A systematic review of the use of the Palliative Care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) in palliative care. J Pain Symptom Manag. 2015;50(6):842–53.CrossRefGoogle Scholar
  26. 26.
    Coast J. Strategies for the economic evaluation of end-of-life care: making a case for the capability approach. Expert Rev Pharmacoecon Outcomes Res. 2014;14(4):473–82.CrossRefPubMedGoogle Scholar
  27. 27.
    Lorgelly P. Choice of outcome measure in an economic evaluation: a potential role for the capability approach. Pharmacoeconomics. 2015;33(8):849–55.CrossRefPubMedGoogle Scholar
  28. 28.
    Bailey C, Kinghorn P, Orlando R, Armour K, Perry R, Jones L, et al. ‘The ICECAP-SCM tells you more about what I’m going through’: a think-aloud study measuring quality of life among patients receiving supportive and palliative care. Palliat Med. 2016;30(7):642–52.CrossRefPubMedPubMedCentralGoogle Scholar
  29. 29.
    Coast J, Huynh E, Kinghorn P, Flynn T. Complex valuation: applying ideas from the complex intervention framework to valuation of a new measure for end-of-life care. Pharmacoeconomics. 2016;34(5):499–508.CrossRefPubMedGoogle Scholar
  30. 30.
    Phelps CE, Madhavan G. Using multicriteria approaches to assess the value of health care. Value Health. 2017;20(2):251–5.CrossRefPubMedGoogle Scholar
  31. 31.
    Baltussen R, Jansen MP, Mikkelsen E, Tromp N, Hontelez J, Bijlmakers L, et al. Priority setting for universal health coverage: we need evidence-informed deliberative processes, not just more evidence on cost-effectiveness. Int J Health Policy Manag. 2016;5(11):615–8.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Hall J, Kenny P, Hossain I, Street DJ, Knox SA. Providing informal care in terminal illness: an analysis of preferences for support using a discrete choice experiment. Med Decis Mak. 2014;34(6):731–45.CrossRefGoogle Scholar
  33. 33.
    Douglas H-R, Normand CE, Higginson IJ, Goodwin DM. A new approach to eliciting patients’ preferences for palliative day care: the choice experiment method. J Pain Symptom Manag. 2005;29(5):435–45.CrossRefGoogle Scholar
  34. 34.
    McCaffrey N, Agar M, Harlum J, Karnon J, Currow D, Eckermann S. Better informing decision making with multiple outcomes cost-effectiveness analysis under uncertainty in cost-disutility space. PLoS ONE. 2015;10(3):e0115544.CrossRefPubMedPubMedCentralGoogle Scholar

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© The Author(s) 2017

Open AccessThis article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

Authors and Affiliations

  1. 1.Deakin Health EconomicsDeakin UniversityBurwoodAustralia
  2. 2.Centre for Health Service Development, Australian Health Services Research InstituteUniversity of WollongongWollongongAustralia

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