Health outcome prioritisation in Alzheimer’s disease: Understanding the ethical landscape

Alexander J Mckeown*, Andrew J Turner, Zuzanna Angehrn, Dianne Gove, Amanda Ly, Clementine Nordon, Mia Nelson, Claire Tochel, Brent Mittelstadt, Alexander Keenan, Michael Smith, Ilina Singh

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

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Abstract

Objective

Health outcome prioritisation is the ranking in order of desirability or importance of a set of disease-related objectives and their associated cost or risk. We analyse the complex ethical landscape in which this takes place in the most common dementia, Alzheimer’s disease.

Background

Dementia has been described as the greatest global health challenge in the 21st century on account of longevity gains increasing its incidence, escalating health and social care pressures. These pressures highlight ethical, social, political challenges about healthcare resource allocation, what health improvements matter to patients, and how they are measured. This study highlights the complexity of the ethical landscape, relating particularly to the balances that need to be struck when allocating resources; when measuring and prioritising outcomes; and when individual preferences are sought.

Methods

Narrative review of literature published since 2007, incorporating snowball sampling where necessary. We identified, thematised and discussed key issues of ethical salience.

Results

Eight areas of ethical salience for outcome prioritisation emerged: (1) Public health and distributive justice, (2) Scarcity of resources, (3) Heterogeneity and changing circumstances, (4) Knowledge of treatment, (5) Values and circumstances, (6) Conflicting priorities, 7) Communication, autonomy and Caregiver issues, (8) Disclosure of risk.

Conclusion

These areas highlight the difficult balance to be struck when allocating resources, when measuring and prioritising outcomes, and when individual preferences are sought. We conclude by reflecting on

how tools in social sciences and ethics can help address challenges posed by resource allocation, measuring and prioritising outcomes, and eliciting stakeholder preferences.
Original languageEnglish
JournalJournal of Alzheimer's Disease
Volume2020
DOIs
Publication statusPublished - 21 Jul 2020

Keywords

  • Alzheimer’s disease
  • dementia
  • ethics
  • health priorities

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