Life Goals and Health Decisions
What will people live (or die) for?
Alan Schwartz
Gordon Hazen (NWU)
Ariel Leifer
Paul Heckerling
Funded by grant SES-0451122 from the National Science Foundation
(Decision, Risk, and Management Sciences) to Schwartz and Hazen, PIs.
Mike Richards also assisted in data collection for this project.
Overview
 What’s a QALY?
 How do we measure QALYs?
 What’s wrong with QALYs?
 How might knowing about life goals help?
 Which life goals really count?
 Now what?
What’s a QALY?
 The most important method for evaluating
health-related quality of life.
 Central to medical decision and costeffectiveness analyses.
 A common metric that weights quantity
and quality of life.
QALY defined
 Years(stat e) * Quality(st ate)
QALY 
health states in remaining lifetime
Quality() ranges from 0 (death) to 1 (perfect health)
For example:
•Two years of life in perfect health = 2 QALYs
•Four years of life in health quality 0.5 = 2 QALYs
How do we measure QALYs?
 Subjectively querying patients, physicians,
or community members.
 Most common method: time-tradeoff utility
assessment
Time-Tradeoff
 Imagine your remaining life expectancy is
20 years
 Imagine you’re going to spend those 20
years in a single sub-perfect health state,
like blindness
 Would you rather:
 Live for 20 years with blindness
 Live for 16 years in perfect health
QALYs
 If your Quality(blindness) = 0.60, and you
expect to live 20 more years (12 QALYs):
 A medical treatment that would cure your
blindness would provide you with 8 additional
QALYs
 And you should prefer that treatment over
extending your (blind) life by 10 years (6
QALYs)
What’s wrong with QALYs?
 Tsevat (2000) notes that numerous studies
have demonstrated that:
 The correlation between one’s current health
and the time-tradeoff utility for that health
state is at best modest.
 Willingness to trade away time is often much
less than the general public, health care
professionals, and even family members
believe.
Unwillingness to trade off
 Miyamoto and Eraker (1988) found that
subjects might:
 accept a tradeoff of life duration for improved
health quality when remaining lifetime was
long
 but decline all tradeoffs if remaining lifetime
was short.
Maximum endurable time
(Sutherland, et al. 1982, and others)
 Sometimes, people indicate they can tolerate no
more than a particular time in an undesirable
health state, beyond which each additional
increment of time decreases overall utility.
 Miyamoto et al. relate an instance of a patient
who regarded his health state as almost
intolerable, but who wanted to live at least 5
more years to see his son graduate from high
school.
Quality of What?
 In Robert Harling’s play Steel Magnolias,
Shelby, a young diabetic woman chooses
to put her health at risk by bearing a child,
saying…
Quality of What?
 Shelby illustrates a distinction pointed out
by Tsevat (2000): a person’s willingness or
unwillingness to trade away life years or
accept a gamble involving life years is
more a function of how the person values
quality of life than quality of health.
Quality of What?
 Several of the problems with QALYs can
be explained – and even motivated – by
noting that quality of life is more than
quality of health
 What issues are potentially relevant to
quality of life?
Adding extrinsic goals to the QALY model
 Specifically, quality of life may also include
attainment of relevant extrinsic goals
 extrinsic here meaning: goals achievable at a specific
point in time
 E.g. Shelby’s goal of having a child
 For extrinsic goals, the level of goal achievement
has importance that is unrelated to life duration.
 Shelby’s goal of bearing a child has value that is
independent of her length of life – having borne a
child has the same value to Shelby whether she lives
5 or 15 or 30 years.
 This value cannot be expressed in standard QALYs.
Examples of extrinsic life goals

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Shelby wants to bear a child;
an author wants to complete a book;
an athlete wants to compete in the Olympics;
an artist wants to complete a major work;
an engineer or architect hopes to see a building raised;
a politician wishes to achieve higher office;
a celebrity plans to write their memoirs;
political activists seek campaign reform legislation;
individuals seek the financial and social welfare of their
families.
How do life goals help?
 Extrinsic goals might account for lack of willingness to trade away
time or take a gamble that might shorten life
 Why should an author trade away or risk time she needs to complete an
important work, for health quality improvements that do not affect her
ability to write?
 Maximum endurable time is sensible if one’s worse-than-death
health state is compensated for by the ability to attain a goal in the
near future.
 Moreover, goal-related issues may impact the value structure
appropriate for decision analyses.
 For instance, prophylactic oophorectomy is an option for women at high
risk for ovarian cancer; but this course of action negatively impacts the
extrinsic goal of bearing children.
Our research program
1.
2.
3.
4.
5.
6.
Studies of life goals: create a taxonomy
Develop new utility models that can incorporate
goal achievement, multiple goals
Develop utility assessment procedures that are
goal-sensitive
Repeat or simulate decision analyses with
goal-sensitive utilities
Replicate unwillingness-to-trade studies and
ask whether goal differences can explain results
Explore implications for societal cost-effectiveness
analyses
Phone survey: Methods
 Fifty Chicago-area residents
 Contacted using random-digit dialing
 Interviewed by telephone, paid $25
 Each respondent asked to generate:
 Three goals they hoped to achieve
within the next five years
 One goal they hoped to achieve
within the next ten years
 One goal they hoped to achieve
during their remaining lifetime.
Phone survey: Methods
 For each goal, the respondent was asked
 how long they thought the goal might take to
achieve, in years;
 whether they would prefer a shorter lifetime
with certain goal achievement to their full
lifetime without goal achievement;
 whether they would prefer lower quality of
health with certain goal achievement to their
full health without goal achievement.
Phone survey: Analysis
 Two investigators (AS and AL) independently reviewed the list
of goals and developed taxonomic classifications. The
classification systems were compared and each goal was
reviewed by the two investigators jointly to resolve any
disagreements.
 Goal categories were then analyzed to determine whether the
categorization could predict goals for which respondents
would be significantly more willing to trade off either life or
health for goal achievement.
 Mixed logistic models were fitted with SAS PROC GENMOD
to predict willingness to trade off from goal category;
correlations in willingness to trade off within each subject
were modeled assuming compound symmetry.
Taxonomy of Goals
Goals
232
Education
20
Health &
Fitness
21
Family
50
Family
Member
27
Self
28
Personal
Fulfillment
17
Job
38
Professional
54
Retire
16
Travel
25
Wealth
59
Financial Personal
Real
Security Property Property
28
6
26
Results: Who will trade?
 Participants were willing to trade life years for goal
achievement in 43% of goals, but were willing to trade
health for goal achievement in only 29% of goals
 Trading life years
 Considerable correlation for goals within subject (r = 0.42, p<.05)
 Women were significantly more likely to trade off life years than
men (OR = 2.49, 95% CI=[1.04, 2.95], p=0.04).
 No differences by age, race, or goal horizon (5 year, 10 year, life)
 Trading health
 Considerable correlation in willingness to trade health for goals
within subject (r = 0.37, p<.05).
 No differences by gender, age, race, or goal horizon
Results: Trade to achieve what?
 Goals categorized as family, wealth, professional, other.
 Controlling for goal category and interactions, women
were still significantly more likely than men to be willing
to trade off life years (OR = 3.69, 95% CI = [1.28, 10.62],
p = 0.016). No difference for trading health
 Controlling for gender and interactions, respondents
were significantly more likely to trade life years for family
goals than any other type of goal (OR = 7.39, [2.42,
22.50], p < 0.001). Similar for trading health (OR = 5.11
[1.67, 15.61], p = 0.0042).
 However, men were 1.55 times more likely to trade life years for
family goals than women (p = 0.0092) and 4.72 times more likely
to trade health for family goals than women (p=0.001).
Willingness to trade life years
Odds ratio
10
1
Family
Wealth
Professional
Other
Male
Female
0.1
Goal category
Willingness to trade health
Odds Ratio
10
1
Family
Wealth
Professional
Other
Male
Female
0.1
Goal category
Implications
 Potential systematic bias in utility assessment,
and a caution to those who might seek to
interpret preference-based utilities as measures
of quality of health.
 Patients who are asked to assess their utilities
for health states using a time-tradeoff method
and who have salient family goals may express
greater willingness to trade life years if they are
likely to achieve their goals in the years
remaining to them than patients with other
salient goals.
Implications
 As a result, patients with family goals, especially male
patients, may generate significantly lower utilities for
health states that threaten those goals than patients with
other life goals, not because they necessarily consider
the quality of those states to be worse, but because their
quality of life would suffer so much from being denied
their goal.
 Alternately, patients won’t want to trade off time to
escape a health state that does not threaten a life goal,
particularly if the life goal requires time for its
achievement. The health state would thereby be
overvalued, especially if patients refuse to trade off any
time at all.
Now what?
1.
Studies of life goals: create a taxonomy

2.
3.
4.
5.
6.
Second study: 100 inpatients at UIC and VA hospitals
Develop new utility models that can incorporate goal
achievement, multiple goals
Develop utility assessment procedures that are goalsensitive
Repeat or simulate decision analyses with goalsensitive utilities
Replicate unwillingness-to-trade studies and ask
whether goal differences can explain results
Explore implications for societal cost-effectiveness
analyses
The Final Thought
People facing medical decisions may – and should
– consider not only:
1. How long they might live
2. In what state of health
But also:
3. What they are living for
(and, if we are to measure quality of life
correctly)
4. What they would be willing to die (sooner) for.