Measuring Preferences for Health States Worse than Death

Abstract

Previous research indicates that persons assigning values to ranges of health states consider some states to be worse than death. In a study of decisions regarding life-sustaining treatments, the authors adapted and assessed existing methods for their ability to identify and quantify preferences for health states near to or worse than death in a population of well adults and nursing home residents. The cognitive burdens involved in these decisions were also evaluated. Hypothetical health states based on six attributes of functional status were constructed to describe severe constant pain, dementia, and coma. The methods of rank order, category scaling, time tradeoff, and standard gamble were adapted to quantify states worse than death. Cognitive burden was assessed using completion rates, interviewer assessments, respondents' self-reporting, and investigators' evaluations. For both respondent groups, all methods showed similar degrees of cognitive burden for those able to complete the tasks and were similar in their ability to identify and quantify preferences. The majority of nursing home residents, however, were unable to complete or comprehend the measurement tasks. Most respondents evaluated their current health and severe constant pain as better than death; dementia and coma were more often considered equal to or worse than death. These results indicate that respondents can and do evaluate some health states as worse than death. The authors recommend systematic inclusion of states worse than death to describe a more complete range of preference values and routine assessment of the cognitive burdens of assessment techniques to evaluate methodologies.

Use of the Physician Orders for Life-Sustaining Treatment among California Nursing Home Residents

“…18,19 Surveys of older people 20 and nursing home residents 21 consistently show that people with greater functional disability tend to desire less aggressive care, and studies of older people looking ahead to future compromised health states demonstrate elicited preferences focusing on comfortoriented care and non-aggressive treatments. 22,23 Possible explanations for fewer POLSTs among compromised residents include the unavailability of proxy decision-makers, family members' uncertainty about loved ones' wishes, or perhaps that long-stay severely compromised nursing home residents previously indicated a preference to live in this health state. Exploration is needed to further understand why longstay nursing home residents with greater cognitive impairment have less POLST use to determine if an advance care planning intervention is needed to better meet the needs of this vulnerable group.…”

A uniform time trade off method for states better and worse than dead: feasibility study of the ‘lead time’ approach

“…Crucially, once transformed, the negative numbers for SWD can no longer be interpreted as "utility" scores, measured on the same scale as those for SBD (Patrick et al, 1994). Yet standard practice in calculating QALYs is to treat all values reported in value sets as commensurable.…”

Comparison of EQ-5D and SF-6D utilities in mental health patients

“…For each possible health state, utilities should be measured on an interval scale, where 1 refers to full health and 0 refers to death [1]. Additionally, negative utilities may occur if very severe health states are evaluated as being worse than death [2]. Measuring utilities is complex and time-consuming.…”