The development of a questionnaire to assess the attitudes
of older people to end-of-life issues (AEOLI)
Susan Catt, Martin Blanchard Department of Mental Health Sciences, University College, London,
Julia Addington-Hall School of Nursing and Midwifery, University of Southampton, Southampton, Maria Zis
Department of Palliative Care and Policy, Kings College, London and Bob Blizard, Michael King Department of
Mental Health Sciences, University College, London
Objectives: To develop an end-of-life attitudes questionnaire for use in a large community-
based sample of older people. Design: Nominal groups and standardization of questions.
Participants: Eighteen older people, ten academics and five specialist palliative care health
professionals were involved in nominal groups. Thirty older people took part in initial pilot
work and a further 50 were involved in reliability testing. Results: A 27-item attitudes of
older people to end-of-life issues (AEOLI) questionnaire. Discussion: In modern times,
death and dying predominantly occurs among older people and yet we know very little
about older people’s attitudes to end-of-life care. The AEOLI questionnaire can be used in
large scale surveys to elicit attitudes on end-of life issues considered important by older
people and health care professionals.
Palliative Medicine 2005; 19: 397?/401
Key words: aged; attitude measures; death and dying
Cancer patients in the UKwho receive care from hospice
and specialist palliative care services are younger than
those who do not receive this service.1?4The reasons for
this are poorly understood. In common with the relative
neglect of older people in health services research, few
studies have investigated the relationship between patient
age and use of hospice and specialist palliative care
services, and few studies have asked older people what
sort of care they would prefer if they were to become
It may be appropriate for specialist palliative care
providers to concentrate their limited resources on
younger patients if, as has been suggested, older patients
are more accepting of death and hence need less
psychological and spiritual support, or if they experience
less severe symptoms and distress. It may also be the case
that older people themselves do not want the types of care
provided under the hospice philosophy and by specialist
palliative care teams. However, little is known about the
attitudes of older people to these and other important
end-of-life issues that have substantial policy implica-
tions. Better information on how older people view these
topics and on the determinants of their views, will help
ensure that service developments in hospice and specialist
palliative care are acceptable to service users and lead to
care that is relevant to the needs and wishes of patients.
This paper describes the development of a question-
naire designed for use in a large, community-based
survey of older people; the attitudes of older people to
end-of-life issues (AEOLI) questionnaire, its structure,
content and standardization.
The major databases, Index Medicus/MEDLINE, EM-
BASE, Psychinfo and CINAHL were systematically
searched with key search words for relevant papers and
measures, which had already been developed to assess
older people’s attitudes to the end-of-life. The instru-
ments found to be available were too narrow in scope for
our purposes, often only addressing a single issue.
Examples included measures such as the Preferences for
Care near the End of Life scale (PCEOL),5or the
Domino scale, a 12-item psychometric instrument, which
measures attitudes toward physician-assisted suicide
(PAS).6The use of such measures would have required
any survey to cover end-of-life issues in a piecemeal
fashion, potentially employing a large number of separate
instruments (with many questions each). Also, few of
these instruments had been widely used in the general
older population. The solution to these dilemmas was to
develop a tool for our needs.
Our aim was to produce an instrument on end-of-life
issues for use in a large, quantitative survey. A brief
questionnaire needed to be developed that would take
Address for correspondence: Martin Blanchard, Department of
Mental Health Sciences, Royal Free and University College
Medical School, University College, London, UK.
Palliative Medicine 2005; 19: 397?/401
# 2005 Edward Arnold (Publishers) Ltd10.1191/0269216305pm1036oa
account of the sensitivity of the subject, would be
appropriate to an older age group and would be clear
and unambiguous in its wording. The construction of an
interview-based rather than a self-report measure was
chosen because of the nature of the questions being
asked, the possible need to support participants during
questioning and the possible need to facilitate completion
in the very elderly.
The older people who helped us to develop the ques-
tionnaire were volunteers drawn from local general
practices, recruited when they visited their practice or
by letter. Because of the nature of the topic, we worked
closely with the general practitioners in our decisions as
to whom to approach.
Generation of topics to be surveyed
In establishing which topics should be covered, it was
necessary to strike a balance between reviews of the
scientific literature and the issues that concerned older
people, palliative care professionals and academics in this
area. Thus, a series of nominal groups were conducted
with older people and palliative care professionals.
Nominal group technique
Nominal groups are a form of focus group that enables
all members of the group initially to voice opinions on a
topic and then, through the group process, rank in
importance the consensus views discussed.7Group ses-
sions are brought together under the guidance of a skilled
group leader and a facilitator. The optimum discussion
group size is between five and eight people. We asked
participants to discuss issues related to cancer, death,
dying and palliative care. They were then asked to
prioritize the issues they considered the most important
for older people in relation to health care near the end-of-
life. The groups were audio-taped so that the discussion
could be cross checked against the written records
produced during the nominal process.
Three nominal groups were carried out with older
people. Grouping was by age (55?/64 years (n? /4); 65?/74
years (n? /6); ? /75 (n? /8)) with a mix of men and women
in each group. Participants were volunteers from two
general practices local to the Royal Free Hospital in
North London (one in an affluent area, the other in a
socio-economically deprived area). Two nominal groups
were conducted with a group of social science academics
(n? /10) and a group of specialist palliative care profes-
sionals (n? /5).
Development of attitude questions
The nominal group material was used to develop
questions designed to elicit attitudes towards a broad
range of issues in end-of-life care.
Standardization of questions
Comprehensibility and face-validity
Forty-seven questions were generated and piloted with 30
older volunteers from two general practices, who were
asked to comment on their appropriateness, readability
and comprehensibility. The wording was adjusted accord-
We asked an additional group of 50 older volunteers
from general practices to complete the penultimate
version of the questionnaire on two occasions, two weeks
apart. These data were subjected to test?/retest reliability.
Two indices were adopted to evaluate the reliability of the
items and scales. The test?/retest reliability was assessed
using Cohen’s Kappa statistic for categorical variables.
Kappa values ? /0.40 are considered to represent moder-
ate concordance, values ? /0.6 reflect substantial con-
cordance. We rejected item Kappa values B /0.40, leaving
Items generated by nominal group sessions with
1. A need for choice. This was top of the list for most older people
and related mainly to the environment in which a person dies ?/
including where, with whom, the conditions (i.e., in comfort and
pain free) and quality versus quantity of life lived.#
2. To be valued and treated with dignity and respect.#
3. Greater ‘recognition of death in our society’.
4. The problem of social isolation for many older people.
5. Good communication with health professionals and patient
involvement in decision-making.#
6. Good continuity of care.
7. Euthanasia (both voluntary and involuntary) and suicide.#
8. Writing a will and having one’s affairs in order.#
9. Having a living will or advanced care directive.#
10. The role of religion and faith.#
Items marked # were also suggested by the academics and
palliative care professionals.
palliative care professional nominal group sessions but not
mentioned by the older people
Additional items generated by the academics and
1. Emergency resuscitation
2. Costs of care ?/ private and public care
3. The attitudes of others ?/ ageism
4. Prevention ?/ promoting health/survival
5. The process of dying, fear of dying rather than death, worries
about organising for death, readiness for death
6. The loss of a future
7. Fear of drugs
8. Sexuality, losing sense of self, of male or femaleness
9. Safety and support
10. Letting others down
11. Positive natural process
12. Not wanting to be a burden
13. Loss of status and income (in younger people)
S Catt et al.
If I were severely ill with no hope of recovery, I would prefer the doctors to make all the
decisions about my care.
If I were severely ill with no hope of recovery, I would want treatment to control my pain
completely , even if it left me muddled.
If I were severely ill with no hope of recovery, I would like to be in control of my pain
medication rather than relying on doctors and nurses to give it to me.
I believe most people are in pain as death approaches.
If I were severely ill with no hope of recovery, I would like to die alone.
If I were severely ill with no hope of recovery, I would rather be cared for in a hospice than at
If I were severely ill with no hope of recovery, I would rather be cared for in a hospital than a
If I were severely ill with no hope of recovery, I would rather be cared for in hospital than at
If I were severely ill with no hope of recovery, it would not matter how many health
professionals I saw as long as I was getting the latest treatment.
By law, doctors should have to follow the instructions in a living will.
If I were severely ill with no hope of recovery, I would not need a living will as my loved ones
would know what to do when the time comes.
If I were severely ill with no hope of recovery, I would like a living will so that the doctors and
nurses knew exactly what care I wanted.
I find the idea of making a living will too gloomy.
Euthanasia/Physician assisted suicide
If I were severely ill with no hope of recovery, I would like a drug at my disposal to end my life
when I chose.
A person should never take their own life.
If my loved ones thought it better for me to die because I was severely ill with no hope of
recovery, doctors should be allowed to help me to die.
If I were severely ill with no hope of recovery, my doctor should be allowed to help me to end
Statements in the final version of the questionnaire.
a final set of 27 questions. The question of internal
consistency was assessed using Cronbach’s Alpha statis-
tic. This assumes that there is an underlying true score;
Cronbach’s Alpha measures the proportion of the
variability in a scale that is due to the true score (i.e.,
that which is not due to error).
Other pilot work
A number of different scale formats were tested for
recording participants’ responses to the attitude ques-
tions. The groups of patients who participated in the
nominal group work were presented with a variety of
scale formats andwere asked to provide feedbackon their
usability. Formats tested included, for example, Likert
scales versus a line scale (visual analogue scale). The
number of response options, e.g., 1?/4, 1?/5, 1?/7, was
explored together with scale labelling, including wording.
Ethical approval was obtained from the North Thames
Multisite Regional Ethical Committee and the Local
Research Ethical Committees involved.
Nominal group work
From the nominal group work, the topics shown in
Table 1 were considered by older people as most
important when addressing the issue of health care needs
at the end-of-life. The items marked with # were also
produced by the nominal group sessions held with the
social science academics and palliative care workers.
Further issues raised by them are included in Table 2.
The final standardized questions cover the areas shown
in Figure 1.
I believe older people are last on the list when it comes to receiving medical care.
Younger people who are dying deserve more consideration than older people who are dying.
Hospice care should give priority to young people who are dying.
Psychological needs including religious/spiritual
If I were severely ill with no hope of recovery, spiritual or religious support would be important
It is more difficult for a younger person to come to terms with death than an older person.
Quality versus quantity of life
If I were severely ill with no hope of recovery, I would want to be kept alive at all costs.
If I were severely ill with no hope of recovery, I would still want to try the latest treatments
whatever those involve.
If I were severely ill with no hope of recovery, the quality of my life would be more important
than how long it lasted.
I fear being helpless and dependent more than I fear death.
I wish that death and dying were more openly discussed in our society.
agree or disagree disagree disagree
Example of the scale used with attitude questions.
S Catt et al.
Response scale format Download full-text
Following participants’ feedback in the pilot work, it was
concluded that a five-point Likert scale with labels for
each available response, ranging from ‘strongly agree’ to
‘strongly disagree’ (Figure 2) was the simplest and most
appropriate scale to accompany the attitude questions,
particularly for the oldest participants in our population.
Internal consistency of themes
Not all the areas covered in the questionnaire are open to
testing of internal consistency, as questions cover differ-
ent aspects of a theme. However, there is evidence of
internal consistency (an underlying true score) in ‘living
wills’ (Cronbach alpha? /0.68), ‘euthanasia and physi-
cian-assisted suicide’ (Cronbach alpha? /0.77) and ‘qual-
ity versus quantity of life’ (Cronbach alpha? /0.52).
The attitudes of older people to end-of-life issues
(AEOLI) questionnaire is a 27-item interview designed
to elicit attitudes to important end-of-life issues in large-
scale quantitative surveys. Its strength is that the items it
contains were generated using nominal group sessions
with older people as well as academics and clinical health
professionals. The questions used were carefully devel-
oped with regard to comprehensibility and face validity
as assessed by older people, as was the response scale
format. A test?/retest reliability study using older people
provided us with questions with reasonable Kappa
statistics, and there is some evidence of good internal
Other workers have used focus groups to explore older
people’s views and values about advanced care state-
ments,8and innovative technologies.9A further research
group has used focus groups and semi-structured inter-
views (n? /45) to explore the attitudes of older people
towards home as a place of care when dying.10No studies
appear to have used a methodology as presented in this
paper to develop a standardized questionnaire.
The AEOLI should provide reliable and valid informa-
tion on the attitudes of older people to death, palliative
treatment and hospice care that could prove useful in the
development of future services. It will also enable
researchers to explore differences in attitudes between
older populations and their correlates. The AEOLI
therefore has the potential to make an important
contribution to extending knowledge in this under-
We would like to thank all the patients and general
practice staff who took part in the study. This work was
undertaken by the authors who received funding from the
NHS London Regional Office, Research and Develop-
ment, Responsive Funding Programme. The views ex-
pressed in the publication are those of the authors and
not necessarily those of the NHS or the Department of
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