Koonal presented as part of an organised session on ‘moving beyond conventional economic approaches in palliative and end of life care’. He summarised the empirical evidence on the extent of pubic support for an end of life premium, before discussing some novel approaches that have been used in recent studies. His presentation was discussed by Helen Mason of Glasgow Caledonian University. Author(s) and affiliation(s): Koonal Shah, Office of Health Economics Event: iHEA Congress Date: 17/07/2019 Location: Basel, Switzerland

1. IHEACONGRESS,BASEL
Koonal Shah
13-17JULY2019
SCALING EVEREST: MOVING BEYOND
CONVENTIONAL ECONOMIC APPROACHES
IN PALLIATIVE & END-OF-LIFE CARE

2. IHEA
JULY 2019
●Common assumption: principal objective of health care is to maximise
population health using available resources (QALY-maximisation)
●Entails the QALY is a QALY principle
2

3. IHEA
JULY 2019
●Common assumption: principal objective of health care is to maximise
population health using available resources (QALY-maximisation)
●Entails the QALY is a QALY principle
Equity considerations in cost-effectiveness analysis
In the reference case, an additional QALY should receive
the same weight regardless of any other characteristics
of the people receiving the health benefit.
3

4. IHEA
JULY 2019
●Common assumption: principal objective of health care is to maximise
population health using available resources (QALY-maximisation)
●Entails the QALY is a QALY principle
Equity considerations in cost-effectiveness analysis
In the reference case, an additional QALY should receive
the same weight regardless of any other characteristics
of the people receiving the health benefit.
Equity
Weight all outcomes equally regardless of the
characteristics of people receiving, or effected by the
intervention in question
4

5. JULY 2019
IHEA

6. JULY 2019
IHEA
Recommendation of the Richards (2008) review: NICE should demonstrate greater
flexibility and assess “what measures could be taken to make available drugs used near
the end of life that do not meet the cost-effectiveness criteria applied to all drugs” (p.4)

7. Extension to life
There is sufficient evidence to
indicate that the treatment offers
an extension to life, normally of
at least an additional three
months, compared to current
NHS treatment
Short life expectancy
The treatment is indicated for
patients with a short life
expectancy, normally less than
24 months
JULY 2019
IHEA
Small patient population
The treatment is licensed, or
otherwise indicated, for small
patient populations
Criteria that need to be satisfied for NICE’s supplementary end of life policy to apply:
If met, NICE’s appraisal committee will consider assigning additional weight to the benefits generated by the treatment

8. Extension to life
There is sufficient evidence to
indicate that the treatment offers
an extension to life, normally of
at least an additional three
months, compared to current
NHS treatment
Short life expectancy
The treatment is indicated for
patients with a short life
expectancy, normally less than
24 months
JULY 2019
IHEA
Small patient population
The treatment is licensed, or
otherwise indicated, for small
patient populations
Criteria that need to be satisfied for NICE’s supplementary end of life policy to apply:
If met, NICE’s appraisal committee will consider assigning additional weight to the benefits generated by the treatment

9. IHEA
JULY 2019
“The Institute recognises that the public, generally, places special
value on treatments that prolong life – even for a few months – at
the end of life, as long as that extension of life is of reasonable
quality (at least pain-free if not disability-free).” (p.348)
9

10. IHEA
JULY 2019
●Placing additional weight on survival benefits in patients with short remaining life
expectancy could be considered a valid representation of society's preferences
●But the NICE consultation revealed concerns that there is little scientific evidence to
support this premise
●Two (unpublished) reviews undertaken in 2011 did not identify many relevant studies

11. IHEA
JULY 2019
●Placing additional weight on survival benefits in patients with short remaining life
expectancy could be considered a valid representation of society's preferences
●But the NICE consultation revealed concerns that there is little scientific evidence to
support this premise
●Two (unpublished) reviews undertaken in 2011 did not identify many relevant studies
“The NHS is funded from general taxation, and it is right that UK citizens have the
opportunity to be involved in the decisions about how the NHS’s limited resources should
be allocated.”
NICE, 2008. Social value judgements: Principles for the development of NICE guidance (p.10)

12. JULY 2019
IHEA
Research question
Do members of the general public
wish to place greater weight on a unit
of health gain for end of life patients
than on that for other types of
patients?
Short version
Is there support for an ‘end of life
premium’?

13. JULY 2019
IHEA

14. IHEA
JULY 2019
Freq. %
Overall finding: end of life premium
- Evidence consistent with an end of life premium 8 35%
- Evidence not consistent with an end of life premium 11 48%
- Mixed or inconclusive evidence 4 17%
Overall finding: quality of life-improving or life-extending end of life treatments
- Quality of life improvement preferred 2 9%
- Life extension preferred 1 4%
- Mixed or inconclusive evidence 2 9%
- Not examined / reported 18 78%

15. IHEA
JULY 2019
Variable
Evidence consistent
with an EOL premium
Evidence not consistent
with an EOL premium
Country
- UK 2 5
- Europe (non-UK) 2 3
- Rest of the world 4 3
Method
- DCE or other choice exercise 4 6
- Willingness-to-pay 3 1
- Other 2 4
Possible to express indifference?
- Yes 6 5
- No or not reported 2 6
Visual aids used?
- Yes 5 3
- No or not reported 3 9

16. IHEA
JULY 2019
● Majority of the studies reviewed
asked respondents to adopt a
‘social decision maker’
perspective, i.e. asking them to
make choices about the health of
others
● Some WTP studies apply an
individual (own health/situation)
perspective

17. IHEA
JULY 2019
● Majority of the studies reviewed
asked respondents to adopt a
‘social decision maker’
perspective, i.e. asking them to
make choices about the health of
others
● Some WTP studies apply an
individual (own health/situation)
perspective
● WTP valuations made by
individuals facing prospect of
imminent death likely to be high
– low/non-existent opportunity
costs
● ‘Dead-anyway’ effect – an
increase in an individual’s
mortality risk reduces their
expected marginal utility of
wealth (thereby increasing their
WTP) since the marginal utility of
wealth when alive is greater than
the marginal utility of wealth
when dead

18. IHEA
JULY 2019
● Majority of the studies reviewed
asked respondents to adopt a
‘social decision maker’
perspective, i.e. asking them to
make choices about the health of
others
● Some WTP studies apply an
individual (own health/situation)
perspective
● WTP valuations made by
individuals facing prospect of
imminent death likely to be high
– low/non-existent opportunity
costs
● ‘Dead-anyway’ effect – an
increase in an individual’s
mortality risk reduces their
expected marginal utility of
wealth (thereby increasing their
WTP) since the marginal utility of
wealth when alive is greater than
the marginal utility of wealth
when dead
● So, it may be consistent with
utility-maximising behaviour for
patients to be willing to spend
most/all of the money they have
on extending their life, even if the
utility gains are small
● But should such WTP values be
used to inform decisions about
how to spend a common pool of
funding raised from the general
population (most of whom will
not be at their end of life)?

19. JULY 2019
IHEA
Used two methods – WTP (individual)
and PTO (social)
6- or 18-month life extensions for end of
life patients were valued more highly
than temporary QOL improvements for
non-end of life patients (controlling for
QALYs gained)
Result observed in both WTP and PTO
surveys, though patterns of responses
differed across the two methods

20. JULY 2019
IHEA

21. JULY 2019
IHEA

22. JULY 2019
IHEA

24. IHEA
JULY 2019
●Several researchers reported evidence of heterogeneous preferences
within their own individual studies, controlling for sample, objective and
methodology
●Reflects diversity of the population and range of opinions within society
●Is it sufficient simply to report a single representative preference (e.g.
that of the median respondent) or is it important to account for the
heterogeneity of views?
24

25. JULY 2019
IHEA

26. JULY 2019
IHEA

27. JULY 2019
IHEA
Example statements:
To extend life in a way that is beneficial to
the patient is morally the right thing to do.
It is not worthwhile devoting more and
more NHS money to someone who is
going to die soon anyway.
Treatments that are very costly in relation
to their health benefits should be withheld.
It is more important to provide treatments
that prolong life of people who are
terminally ill than treatments that improve
their quality of life.
●Allows unexpected viewpoints to emerge
●Examines strength of preference at the individual level

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Toenquire about additional information and analyses,
please contact:
Koonal Shah PhD
kshah@ohe.org