IDEAS home Printed from https://ideas.repec.org/a/wly/hlthec/v30y2021i5p1033-1049.html
   My bibliography  Save this article

“It is not a scientific number it is just a feeling”: Populating a multi‐dimensional end‐of‐life decision framework using deliberative methods

Author

Listed:
  • Joanna Coast
  • Cara Bailey
  • Alastair Canaway
  • Philip Kinghorn

Abstract

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualization of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach. Twelve focus groups were held (38 members of the public, 29 “policy makers,” seven hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyze qualitative data, exploring principles behind individuals' weightings. Average weights elicited from members of the general population and policy makers for the importance that should be given to close persons (vs. patients) were very similar, at around 30%. A “sliding scale” of weights between health gain and the capability for a good death resulted from the policy maker and volunteer groups, with increasing weight given to the capability for a good death as the trajectory got closer to death. These weights can be used in developing a more comprehensive framework for economic evaluation at end of life.

Suggested Citation

  • Joanna Coast & Cara Bailey & Alastair Canaway & Philip Kinghorn, 2021. "“It is not a scientific number it is just a feeling”: Populating a multi‐dimensional end‐of‐life decision framework using deliberative methods," Health Economics, John Wiley & Sons, Ltd., vol. 30(5), pages 1033-1049, May.
    • Handle: RePEc:wly:hlthec:v:30:y:2021:i:5:p:1033-1049
    DOI: 10.1002/hec.4239
    as

    Download full text from publisher

    File URL: https://doi.org/10.1002/hec.4239
    Download Restriction: no
    File URL: https://libkey.io/10.1002/hec.4239?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Werner B. F. Brouwer, 2019. "The Inclusion of Spillover Effects in Economic Evaluations: Not an Optional Extra," PharmacoEconomics, Springer, vol. 37(4), pages 451-456, April.
    2. Kinghorn, Philip, 2019. "Using deliberative methods to establish a sufficient state of capability well-being for use in decision-making in the contexts of public health and social care," Social Science & Medicine, Elsevier, vol. 240(C).
    3. Ingrid Robeyns, 2005. "The Capability Approach: a theoretical survey," Journal of Human Development and Capabilities, Taylor & Francis Journals, vol. 6(1), pages 93-117.
    4. Hareth Al-Janabi & Job van Exel & Werner Brouwer & Joanna Coast, 2016. "A Framework for Including Family Health Spillovers in Economic Evaluation," Medical Decision Making, , vol. 36(2), pages 176-186, February.
    5. Amartya Sen, 2005. "Human Rights and Capabilities," Journal of Human Development and Capabilities, Taylor & Francis Journals, vol. 6(2), pages 151-166.
    6. Sen, Amartya, 1999. "Commodities and Capabilities," OUP Catalogue, Oxford University Press, number 9780195650389.
    7. Julie A. Campbell & Douglas Ezzy & Amanda Neil & Martin Hensher & Alison Venn & Melanie J. Sharman & Andrew J. Palmer, 2018. "A qualitative investigation of the health economic impacts of bariatric surgery for obesity and implications for improved practice in health economics," Health Economics, John Wiley & Sons, Ltd., vol. 27(8), pages 1300-1318, August.
    8. Huynh, Elisabeth & Coast, Joanna & Rose, John & Kinghorn, Philip & Flynn, Terry, 2017. "Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life," Social Science & Medicine, Elsevier, vol. 189(C), pages 114-128.
    9. Hareth Al-Janabi & Terry Flynn & Joanna Coast, 2011. "QALYs and Carers," PharmacoEconomics, Springer, vol. 29(12), pages 1015-1023, December.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Ryan, Mark, 2022. "The ethics of dietary apps: Technology, health, and the capability approach," Technology in Society, Elsevier, vol. 68(C).
    2. Joanna Coast, 2019. "Assessing capability in economic evaluation: a life course approach?," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(6), pages 779-784, August.
    3. Malida Mooken & Roger Sugden, 2014. "The Capabilities of Academics and Academic Poverty," Kyklos, Wiley Blackwell, vol. 67(4), pages 588-614, November.
    4. Ishrat Ali & Griffin W. Cottle, 2021. "Reconceptualizing Entrepreneurial Performance: The Creation and Destruction of Value from a Stakeholder Capabilities Perspective," Journal of Business Ethics, Springer, vol. 170(4), pages 781-796, May.
    5. Lennon, Mick & Douglas, Owen & Scott, Mark, 2019. "Responsive environments: An outline of a method for determining context sensitive planning interventions to enhance health and wellbeing," Land Use Policy, Elsevier, vol. 80(C), pages 68-78.
    6. Ulriksen, Marianne S. & Plagerson, Sophie, 2014. "Social Protection: Rethinking Rights and Duties," World Development, Elsevier, vol. 64(C), pages 755-765.
    7. Sachie Mizohata & Raynald Jadoul, 2013. "Towards International and Interdisciplinary Research Collaboration for the Measurements of Quality of Life," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 111(3), pages 683-708, May.
    8. Edward Henry & John Cullinan, 2024. "Addressing the distributional consequences of spillovers in health economic evaluation: A prioritarian approach," Health Economics, John Wiley & Sons, Ltd., vol. 33(4), pages 764-778, April.
    9. Mario Biggeri & Jean-Francois Trani & Parul Bakhshi, 2009. "Le teorie della Disabilità: una Reinterpretazione Attraverso l'Approccio delle Capability Amartya Sen," Working Papers - Economics wp2009_04.rdf, Universita' degli Studi di Firenze, Dipartimento di Scienze per l'Economia e l'Impresa.
    10. Van Ootegem, Luc & Spillemaeckers, Sophie, 2010. "With a focus on well-being and capabilities," Journal of Behavioral and Experimental Economics (formerly The Journal of Socio-Economics), Elsevier, vol. 39(3), pages 384-390, June.
    11. Konrad Ott, 2014. "Institutionalizing Strong Sustainability: A Rawlsian Perspective," Sustainability, MDPI, vol. 6(2), pages 1-19, February.
    12. Veronika V. Eberharter, 2018. "Capability Deprivation, and the Intergenerational Transmission of Social Disadvantages—Empirical Evidence from Selected Countries," Social Sciences, MDPI, vol. 7(12), pages 1-22, December.
    13. Aristea Koukiadaki, 2010. "The establishment and operation of information and consultation of employees’ arrangements in a capability-based framework," Economic and Industrial Democracy, Department of Economic History, Uppsala University, Sweden, vol. 31(3), pages 365-388, August.
    14. Chaigneau, Tomas & Brown, Katrina & Coulthard, Sarah & Daw, Tim M. & Szaboova, Lucy, 2019. "Money, use and experience: Identifying the mechanisms through which ecosystem services contribute to wellbeing in coastal Kenya and Mozambique," Ecosystem Services, Elsevier, vol. 38(C), pages 1-1.
    15. Christian Arndt & Jürgen Volkert, 2006. "Amartya Sens Capability-Approach: ein neues Konzept der deutschen Armuts- und Reichtumsberichterstattung," Vierteljahrshefte zur Wirtschaftsforschung / Quarterly Journal of Economic Research, DIW Berlin, German Institute for Economic Research, vol. 75(1), pages 7-29.
    16. Ángeles Sánchez & Jorge Chica-Olmo & Juan de Dios Jiménez-Aguilera, 2018. "A Space–Time Study for Mapping Quality of Life in Andalusia During the Crisis," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 135(2), pages 699-728, January.
    17. Christian Arndt & Juergen Volkert, 2009. "Poverty and Wealth Reporting of the German Government: Approach, Lessons and Critique," IAW Discussion Papers 51, Institut für Angewandte Wirtschaftsforschung (IAW).
    18. Mohammad Azmoodeh & Farshidreza Haghighi & Hamid Motieyan, 2023. "Capability Index: Applying a Fuzzy-Based Decision-Making Method to Evaluate Social Inclusion in Urban Areas Using the Capability Approach," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 165(1), pages 77-105, January.
    19. Li Liu & Helen Ross & Anoma Ariyawardana, 2020. "Community Development through Supply Chain Responsibility: A Case Study of Rice Supply Chains and Connected Rural Communities in Central China," Sustainability, MDPI, vol. 12(3), pages 1-19, January.
    20. Tapager, Ina & Joensen, Lene Eide & Vrangbæk, Karsten, 2022. "The role of self-efficacy, well-being capability and diabetes care assessment for emotional and diabetes management challenges during the COVID-19 pandemic: Findings from a follow-up study," Social Science & Medicine, Elsevier, vol. 310(C).

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:wly:hlthec:v:30:y:2021:i:5:p:1033-1049. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Wiley Content Delivery (email available below). General contact details of provider: http://www3.interscience.wiley.com/cgi-bin/jhome/5749 .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.