QALYs and Terminal Stages of Life

Abstract

Background: Recent work indicating that proximity to death may be a more important determinant of health care expenditures than age has highlighted the need to acquire a better understanding of the outcomes of health care at terminal stages of life. The apparent willingness of societies to devote substantial resources to this stage of life (perhaps implicitly mirrored in the value of life literature) suggests that we need to think beyond the quality adjusted life year (QALY).

Objectives: To explore the appropriateness of QALYs in the context of the provision of health care for those at terminal stages of life. Issues addressed: The debate around QALYs in this context touches on three related issues: - whether generic tools typically used to calculate QALYs can capture the dimensions of health which are important to those at terminal stages of life; - the nature of societal preferences to favour some groups over others in the allocation of resources; - whether trade-offs between different health states and between survival and quality of life among this group are systematically different from other groups.

Those in terminal stages of life include not only the frail elderly but also those at younger ages suffering from terminal illness. Firstly, it has been argued that the needs of older age groups may not be well reflected in QALYs. Investigations into the quality of life of older people have emphasised the relevance of concepts such as "closeness" (e.g. being around loved ones) and dignity. Secondly, with regard to short periods of survival, there is some evidence that the trade-off between surival and quality of life assumed by QALYs may not hold. For the average individual, it may not be possible to predict age of death with any degree of confidence, even to within 5-10 years. For the frail elderly or terminally ill, there is a much higher level of certainty, with death expected to occur within a short space of time. For this reason, we hypothesise that this sub-group may have systematically different preferences from the average individual in relation to longevity and quality of life, brought about by being in a state of 'dying'. In the case of old age, discrete variables, such as the death of one's spouse or the presence of severe clinical depression, may affect preferences in a similar way. In this study, we focus on the sensitivity and applicability of the QALY to the sub-group in their "terminal stage of life". As part of our research, we will seek to define this sub-group more precisely.

Methods: A literature review within the economic, gerontology, health and social domains to identify the issues associated with the use of QALYs in this sub-group. We will also interview experts from within these respective fields to identify some of the key issues in practice. Initial findings from the literature review reveal that a range of existing quality of life measures have been applied to the terminal care setting. However, preferences specifically at this stage of life remain relatively little explored.     

Keywords: QALYs, terminal illness, health state preferences

JEL Classification: I18