Aging Clinical and Experimental Research

REVIEW ARTICLE

Death and dying from old peoples point of view.

A literature review*
Ingalill Rahm Hallberg
The Swedish Institute for Health Sciences, Lund University, Lund, Sweden

ABSTRACT. Providing high-quality end-of-life care INTRODUCTION

to older people is a requirement especially for coun-
tries with a high proportion of old and very old
people. This calls for an understanding of older
peoples view of death and dying, and one way for-
ward is to investigate the current knowledge base.
This study aimed at reviewing the literature of em-
pirical studies about older peoples view of death
and dying, whether in a terminal phase of life or
not. A total of 33 publications were included, iden-
tified in a stepwise literature search done in Med-
line, CINAHL and PsychInfo, using the terms
death, attitude to death, death and dying in
combination with aged. Very few studies focused
solely on the oldest old. The designs were mainly
cross-sectional, quantitative or qualitative, using
personal interviews. Some common themes of im-
portance for further research were revealed, such as
older peoples readiness to talk about death and dy-
ing, conceptions of death, after-death and dying,
and were seemingly related to anxiety about death,
the impact on and of those close by, having both
negative and positive connotations, especially re-
lated to balancing closeness, being a burden and de-
pendency, death anxiety and its possible an-
tecedents, the fine line between natural sadness
and suffering from depression, and worry about
the end-of-life phase. The lack of studies dealing
with older peoples view of death and dying, and the
heterogeneity with regard to research questions
and samples implies that findings may serve main-
ly as inspiration for further research.
(Aging Clin Exp Res 2004; 16: 87-103)
2004, Editrice Kurtis
Death and dying belong to the natural course of life. Old
and especially very old people who are close to the end of
their lives may ponder and reflect over their life and forth-
coming death and dying process (1). Their views of death
and dying are of the utmost importance for health care staff
to know, since they may form the basis for how to ap-
proach people at the end of life and release them from
death anxiety. Research findings from younger people
cannot easily be generalized to older people, since death
and dying most likely take on a different meaning earlier in
life. Also, the view of death and dying may differ between
younger old, old and very old people, because they are at
different points in their life span. Thom (2) reported from
a study of quality of life (QoL) in old people (75-99 years of
age) with cancer that those between 75 and 79 years of age
had the lowest QoL, and that thereafter the differences be-
tween those with cancer and those without faded away. It
may well be that the aging process includes adapting to the
fact that life will come to an end.
The knowledge of how older people relate to their
death and dying should preferably be from an inside per-
spective, e.g., derived from their narrations and not only
at the end-phase of life but also before that phase. The pro-
cess of dying may be short or take place over a long pe-
riod. In most cases, the older person is in contact with pro-
fessionals in long-term care in hospital, or living in special
accommodation or receiving home care (3). Although
there seems to have been a change in that not so many
older people die in hospital as earlier on, still most deaths
take place in hospitals or nursing homes, i.e., in profes-
sional care settings (4). A literature review of place of
death and access to home care in the end-phase of life ac-
tually indicated inequalities, in that those in poor eco-

*Review article based on the 2nd Andrus Viidik Lecture in Gerontology at the 17th Nordic Congress of Gerontology, Stockholm, Sweden,
May 23-26, 2004. The Nordic Gerontological Federation (NGF) initiated these lectures when Professor Viidik retired from the NGF, after
being its secretary 1974-1988 and chairman 1988-2002.
Key words: Aged, attitude to death, death, dying, end-of-life care, older people, systematic review.
Correspondence: Prof. I.R. Hallberg, The Swedish Institute for Health Sciences, PO Box 187, Lund University, SE 221 00 Lund, Sweden.
E-mail: Ingalill.rahm_hallberg@omv.lu.se
Received September 12, 2003; accepted in revised form December 9, 2003.

Aging Clin Exp Res, Vol. 16, No. 2 87

I.R. Hallberg
nomic conditions and those with poor access to informal
caregiving were less likely to die at home (5). The re-
view, however, did not focus on old or very old people,
who may have even poorer access to informal caregivers
and thus fewer options to die at home. In any case, a per-
son in the end-phase of life is likely to stay in contact with
professionals of various kinds, and their understanding of
the older persons end-of-life phase is part of the psycho-
social milieu of older people and their dying process. A re-
cent review showed that physicians predictions of survival
in terminal cancer patients were highly correlated to actual
survival, although mostly overestimated (6). Understanding
of older peoples view of death and dying is fundamental
to providing them with high-quality care at the end of life.
However, knowledge of older peoples view of their own
forthcoming death and the dying process is sparse (7, 8).
A systematic review of the literature on the doctor-pa-
tient relationship initiated by the Swedish Council on
Technology Assessment in Health Care located few em-
pirical studies focusing on people 65 years or older and
their view of how to approach matters related to death
and dying (9). They showed that doctors hesitate to
bring up these matters, whilst the patients appreciate it
if they do and want to talk about it, although they some-
times think it is emotionally upsetting. Kastenbaum (10)
stated that stereotypes, negative or avoiding societal at-
titudes towards death and dying, especially in old people,
influence those in touch with older people, not to say the
older persons themselves. Perhaps these societal attitudes
may explain findings along the lines that doctors tend not
to talk about death to older people, although they are
willing to discuss their own death and the end-phase of
life, and this aggravates their end of life. Also, it has been
reported that physicians who spend more time caring for
their patients experience feelings of loss when those
patients die (11). This may in turn contribute to avoidance
if no debriefing is available.
Older people being willing to talk about death and dy-
ing coincides with observations from interview studies
carried out at our department, including especially the
oldest old. Interviewees spontaneously brought up issues
related to death and dying, although the interviews
were not set to cover those areas. In their narrations, it
was striking that they seemingly did not fear death;
some of them looked forward in a seemingly unaffected
way, others more in a style of adaptation and accepting
that this is what life is about (12). Their way of narrating
gave the impression that they were mentally prepared
for the fact that their remaining lifetime was limited, and
they did not convey the impression of depression but
rather of acceptance. They did not speak about death
with agony, which does not mean that they did not
feel agony about death. Those who were agonized may
simply have decided not to speak about death. These ob-
servations coincide with statements made by Kasten-
88 Aging Clin Exp Res, Vol. 16, No. 2
baum (10), that death anxiety decreases rather than
increases with age. He recognized the fact that longi-
tudinal studies are required to determine whether death
anxiety increases or decreases with age and that such
studies are not yet available. Older peoples explanations
for their low scores were that they viewed death in the
light of their entire life and the accomplishments made
during their lifetime, and death could not take that
away (p. 368). Similarly, Aiken (13) reported that cross-
sectional surveys show lower fear of death in older
adults than in middle-aged people, recognizing possible
cohort effects in these studies. He suggested that the el-
derly are more likely to see themselves as having had
their day and to view death in old age as only fair (p.
371) and that older people are better able to cope
with the forthcoming death, partly because of their life
experiences, their failing health and the loss of people
close to them. Others have likewise reported that the at-
titude towards death seems to change over the life
span (14) and emphasized that it is in the light of a re-
view of life that death is regarded. The life span per-
spective is perhaps best understood within the frame-
work of narrative gerontology suggesting, among other
things, that the meaning and nature of time is con-
nected to our lives as a story, and that the story is
open to be changed, i.e., our lives are continuously
re-storied (15). Supposing that death and dying is re-
viewed from a life span perspective, agony may differ in
those who reach old age with a certain bitterness from
those who look back at their life with satisfaction, but
open to be re-storied.
From previous research it seems important to separate
older peoples view of death (the very last moment of life,
the moment of death, and the following moment) from
that of dying (the time preceding death, when it is obvious
that the ongoing process will end in death). Also, the view
of death and dying in older people not in an end-of-life
phase (i.e., it has been established that the person is in the
terminal phase of life) may differ from that of older peo-
ple in the end-of-life phase or people who have just
been told that they have a terminal disease. Kbler-Ross
(16) suggested that people in the end-of-life phase went
through five stages from denial/shock, anger, bargaining,
and depression, preparatory to acceptance. To my knowl-
edge, this theory of the dying process was not developed
primarily from older peoples views. However, Thom (12)
found that older people (range 75-88), when told that they
had cancer, were stricken by a sudden awareness of the
finiteness of life, which they processed in the light of their
life span and other peoples death and dying. They ac-
cepted the finiteness of life, but feared dying. These sto-
ries have features resembling Kbler-Ross (16) phases at
the end of life. Fear of dying, agony, and anxiety, espe-
cially related to thoughts about suffering, being aban-
doned, and that the health care system may fail to meet

their need of care were narrated in the interviews con-
ducted in different studies at our department. Similar
observations have been reported previously (10, 13,
17). Thus, research about older peoples view of death
and dying should perhaps take into consideration that
death and dying are two separate concepts, related but dif-
ferent, and that the view of them may differ depending on
whether a person is at the end-of-life phase or not.
The observations about the older persons attitude to
death and dying and lower degree of death anxiety may
perhaps be understood within the theory of life span
development put forward by Eriksson et al. (18). They sug-
gested that the last phase of life had to do with coming to
terms with integrity versus despair and that, if this is
successfully resolved, it results in wisdom. Wisdom is the
detached concern with life itself, in the face of death itself.
It maintains and learns to convey the integrity of experi-
ence, in spite of the decline of bodily and mental func-
tions (18, pp. 37-8). Their research was longitudinal, and
included interviews with participants at a late stage of their
lives. The participants thought about dying and death and,
in contrast to what was stated earlier, fear of death was
put forward. This was explained further in terms of being
afraid of pain and suffering, thus referring to dying rather
than death. The theory of Eriksson et al. implies that at
some point a transition may take place, emotionally
preparing older people for death, but not for dying. The
implication of empirical evidence for such knowledge is
above all that it would help health care staff to over-
come their own fear of talking to older people about
death and perhaps ease their own and the older persons
fear of dying. The proportion and number of old people
in the Western world have never been as large as they are
now, which has implications for research. As a starting
point, there is a need for a fresh overview of available re-
search about, in particular, very old peoples view of
their death and dying. This will be even more important
because of the changes in the proportion of older people
in the population and longevity. This review therefore
aimed at a more comprehensive grasp of available em-
pirical studies about older peoples view of death and dy-
ing, whether in a terminal phase of life or not.
METHODS
A total of 33 publications were included, identified in
a stepwise literature search of which the first step was
the search done in Medline, CINAHL and PsychInfo us-
ing the terms death, attitude to death, death and dy-
ing in combination with aged over 80. Altogether,
there were 715 references in these searches, of which
some occurred in all data bases (288 from Medline,
153 from CINAHL, 274 from PsychInfo). In the second
step, abstracts were reviewed in relation to the re-
search questions. One hundred and seventy-three papers
were closely reviewed for their relevance and scientific
Older peoples view of death and dying
quality. The search and selection of studies was broad,
so as not to exclude studies that may have contained
findings pertinent to the aims. Thus, the large reduction
was mainly due to the fact that it concerned studies giv-
ing family perspectives, not including older people at all
or studies related to palliative care. The inclusion crite-
ria were that the study should include older peoples per-
spectives, preferably only people over 80 years of age,
and that it should explicitly address their view of death
and/or dying, in the end-of-life phase or not. It turned
out that hardly any studies dealt only with people aged
80 years or over, and thus a wider age range had to be
accepted: either only people aged 60 or over, or a
large proportion of people above 60 years of age
(above 40%). Excluded were studies using a second-or-
der perspective (families or staff reporting on behalf of
the older person), studies related to end-of-life care
programs, reporting no empirical data or no obvious
themes derived in the analysis, a large proportion of
younger informants or in which the proportion of peo-
ple above 60 years of age could not be established, stud-
ies mainly related to suicide or euthanasia or older peo-
ple being suicidal, as well as quality of life at the end-
phase of life. Thus, in the third step, the 173 studies
were evaluated in relation to the inclusion and exclusion
criteria, resulting in 43 studies i.e., 130 studies did not
meet the inclusion criteria. Lastly, scientific quality was
evaluated using the criteria of Goodman (19), focusing
on internal and external validity, reliability, and critical
discussion. Qualitative studies were evaluated according
to reliability: description of the framework, context,
selecting respondents, data collection and analysis, con-
sistency in framework, methods and analysis, as well as
presenting excerpts that showed consistency with the
themes (9).
RESULTS
Most studies came from the USA or Canada, and
must thus be interpreted in the cultural context of these
countries. Very few studies focused solely on the oldest
old, people aged 80 years or above, whether they were in
the end-of-life phase or not (Tables 1-4). In some cases,
samples represented a broad age range, from very young
people to very old. The designs were mainly cross-sec-
tional, either quantitative or qualitative, and the pre-
dominant data collection method was personal inter-
views. Some studies dealt with both death and dying, and
they are reported here in accordance with where em-
phasis was placed.
Views of death in people in the end-of-life phase
or not (20-35)
Two dominant lines of research on participants
views of death, including those not in an end-of-life
stage, were found: studies dealing with thoughts about
Aging Clin Exp Res, Vol. 16, No. 2 89
I.R. Hallberg

death and after-death, both qualitative and quantita- death anxiety was reported to be low (29, 30) and sig-
tive (20-24), and others, mainly quantitative, related nificantly lower than in younger adults (24). A meta-anal-
to death anxiety, hardiness, attitudes to hastening death, ysis of 49 studies (27) showed death anxiety to be sig-
and the will to live (25-32) (Table 1, 20-32). The level of nificantly related to ego integrity, more physical and psy-

Table 1 - Studies related to views of death in samples of older people, not at the end of life.1

Author(s) Aims Informants Design, methods Findings

Leichtentritt To describe elderly 26 elderly: Phenomenological, personal Death in and for itself was addressed as
and Rettig Israelis views of 15 women, 11 men interviews introducing the an inevitable completion of the life circle,
2000 (20) a good death. (range 60-86), selected questions: a phenomenon that has to be accepted.
Israel through advertisement, - their opinions about the con- Emotions were: anger, fear and anxiety;
chain sampling, personal cept of a good death sadness and grimness; confidence and
connections. - their end-of-life preferences security, mostly in Gods actions.
- how to distinguish between a Connections between the entire life and
desirable and an undesirable death as well as the socio-cultural traditions
death. of death.
Establishing time boundaries: making valu-
able and meaningful the last weeks of life and
the months after death.
The process: 1) Prior to physiological death:
dying at an appropriate age, maintaining
independence and self-reliance, completing
tasks, maintaining mental capacity, accept-
ing imminent death. 2) Physiological death:
natural dying vs prolonging life or promoting
death; avoiding pain and suffering; accepting
my death by others, sharing or isolating
others from the process, separating from the
world by stating ones wisdom, finding spir-
itual consolation. 3) After physiological death:
integrity of self and ritual, achieving respect,
providing continuity of heritage, promoting
a legacy, the role of religion in a Jewish
State, the consequences of deviant behavior
(suicide or being buried).
Van der Gest Views on death. 35 older people and Anthropological study - Older people looked forward to death,
2002 (21) some relatives, snowball - personal conversations. a welcome visitor that will bring peace
Ghana sampling (age not and rest after a strenuous life.
established). - Bad death is the death that terminates
life, not yet completed.
- Agnosticism prevailed you cannot tell
where a dead person goes.
- Life after death could be about reward or
punishment.
- Ancestorhood facilitates remembering.
- Reincarnation, especially the return of
children accepted.
Fry Cognition of fear and 198 elderly home-bound: Semi-structured interviews. Category 1: Physical and emotional inse-
1990 (22) concerns about 100 women, 78 men - Concerns about death and curity including factors: pain and suffering;
Canada death and dying. (mean age 70.8; range dying, fear and anxiety. fear of sensory loss; risk to personal safety.
1. Themes of death 65.5-87.3). - List and describe aspects of Category 2: Self-esteem concerns being
and dying concerns death and dying causing permanently forgotten, no-one caring, life
2. Coping, dealing concern, and specific contents has been useless, no-one attending the
with concerns. of fears and anxiety about funeral, no-one paying respect or tribute,
death and dying. Factor analysis. autopsy, indignity at the hands of under-
takers. Rejection by God, reincarnation,
punitive elements, no admission to heav-
en, timelessness in life beyond death, loud
noise everywhere.
Category 3: Uncertainty of life beyond death
(magical supernatural), vacuum beyond
death, stillness, emptiness, shadow every-
where beyond death, darkness beyond death.
Coping: Internal self-control, social support
seeking, prayer, becomes occupied with ob-
jects of attachment, avoidance, denial and
escape.

Continued

90 Aging Clin Exp Res, Vol. 16, No. 2

 Older peoples view of death and dying

Table 1 - Continued

Author(s) Aims Informants Design, methods Findings

Rao et al. To assess the nature 125 randomly selected Personal interviews including 40% said they thought about dying, occa-
1997 (23) of thoughts regarding community residents: Cambridge mental disorder of sionally (66.4%) or often (10.4%), and
UK death and dying. 92 women, 33 men elderly examination, geriatric 89.6% said they were not worried about
(mean age 86.1; range depression scale, modified the prospect of dying. Thoughts about
81-96). version of scale for suicidal death were associated with depression
ideation. and low contact with informants and nega-
tively with cognitive impairment. Comments
included circumstances of dying (alone), tim-
ing of death, effects of others (joining dead
spouse, other people dying), effects on oth-
ers (burden, what happens to family), health
status, material concern (what happens to
possessions, enough money to stay alive),
current wish to die (nothing to live for).
Cicirelli The influence of 68 older adults: Instruments: The personal Death meanings different only for sub-
2001 (24) age and gender on 56 women, 12 men meaning of death scale (death scale motivator, indicating that these
USA meanings of death (mean age 82.6; as legacy, as afterlife, extinction, conceptions of death were stable over
and fears of death, range 70-97); motivator); MFODS sub-scales; age. Fear of death showed significantly
comparing young 78 younger adults: fear of the dying process, fear higher score in younger adults in all sub-
and older adults. 56 women, 22 men of being destroyed, fear for scales except being destroyed. Gender
(mean age 21.9; significant others, fear of the differences were obtained with higher
range 20-29). unknown; SES. scores for women than men in death as
extinction, fear of dying and fear of the
unknown. Death meanings of what will
happen after death (afterlife, extinction)
had the closest relationship to fear of
death; afterlife lower fear of death, extin-
ction greater fear.
Carmel How does the will to 987 persons: Personal interviews. Women have weaker will to live and less
2001 (25) die associate with the 47.4% women, Will to live from 0-5, desire to prolong life. Variables explain-
Israel wish to prolong life? 52.6% men hypothetical situations of life- ing the will to live:
(mean age 77.5; restraining treatment, psycho- For men: psychosocial indicators, age, psy-
range 70-101). somatic symptoms and health, chosomatic symptoms, living with a partner,
mood, self-esteem, life satisfac- self-esteem, fear of death.
tion, fear of death and dying, For women: life satisfaction, self-esteem,
religiosity, social support. fear of death.
Cataldo To investigate the 90 hospital residents: Personal interviews with - There was an inverse relationship
1994 (26) relationship between 46 women, 44 men self-report instruments: the between hardiness and depression.
USA hardiness, death (mean age 73.3; Zung-SDS for depression, - There was an inverse relationship
attitudes and range 65-92). health-related hardiness, death between healthy death attitudes and de-
depression. attitude profile. pression (i.e., approach-oriented death,
acceptance and neutral death acceptance).
- There was a positive relationship
between depression and escape-orien-
ted death, acceptance, and fear of
death/dying.
Fortner and Systematic review; 49 studies: 66.5% Literature search, manual and Higher levels of death anxiety are related
Neimeyer relationship between women, 33.5% men electronic up to December to lower levels of ego integrity (r=0.30),
1999 (27) death anxiety, age, (mean age 72.68; range 1996. Published and unpub- more physical problems (r=0.19), more
USA gender, ego integrity, 61-87; mean number lished papers, meta-analysis. physiological problems (r=0.28).
institutionalization, of participants 91.98; Age, gender and religiosity are not reliable
physical and psycho- range 16-293). predictors of death anxiety.
logical problems and Religious beliefs measure predicted greater
religiosity. correlation between religiosity and death
anxiety than measures that mix religious be-
lief and religious behavior. Death anxiety
proved to be higher among elderly living in
nursing homes than those living in more in-
dependent settings (independent residence or
assisted-living facilities).
Cicirelli To determine the 388 inhabitants: Interviews including measures for Significant correlations between fear
1999 (28) relationship of psycho- 285 women, 103 men fear of death (MFODS, two sub- of dying and ethnicity, gender, external
USA social and demogra- (265 whites, 123 African- scales; fear of dying, fear of the locus of control, and negatively correlated
phic variables to spe- Americans; mean age unknown); religiosity, locus of with religiosity. Fear of the unknown
cific fear of death. 72.65; SD 7.73). SES control, perceived social support, was correlated negatively with SES and
showed a social status demographic variables, analysis with external locus of control, religiosity,
slightly above that of high to test a hypothesized model and perceived social support.
school graduate or similar. (LISREL8).
Continued

Aging Clin Exp Res, Vol. 16, No. 2 91

I.R. Hallberg

Table 1 - Continued

Author(s) Aims Informants Design, methods Findings

Cicirelli Fear of dying in path analysis; externality

1999 (28) and religiosity (negative) had a direct effect
USA on fear of dying and also ethnicity, age
(negative) and gender, whilst social support
had no significant effect. Ethnicity and gen-
der had an indirect effect through religiosity.
Fear of the unknown: external locus of con-
trol, religiosity (negative), and social sup-
port (negative) had a direct effect on fear.
Ethnicity had an indirect effect through re-
ligiosity; age through externality and social
support; gender through religiosity and so-
cial support; SES through social support
and externality.
Wu et al. Cognitive and emotio- 237 respondents: Personal interviews including Low death anxiety score (3.54, possible 15)
2002 (29) nal reactions to death 175 women, 62 men death anxiety scale, general most fear painful death, getting cancer,
Hong Kong in Chinese (Hong (mean age 73.9; SD 6.8; health questionnaire, physical thoughts about shortness of life, nervous
Kong) elderly. range 60-91). disorders, recent stressors, reli- when others spoke about death, and
gious affiliation, demographics, horrified by the sight of a dead body.
income. No gender differences, negative relation to
age.
Multiple regression analysis showed age,
recent stressors and psychological distress to
predict death anxiety, the last with the
strongest explanatory value.
Sullivan et al. Older Dutch peoples Functionally impaired Personal interviews: Think a lot Preoccupation with death, fear of death
1998 (30) view on death, dying community-dwelling of death? Afraid of death? Fears stable and low over time. Fear of death
Netherlands and hastened death elders: of the dying process (6 items); and dying related to poor health, especially
and in relation to 72% women, 28% men beliefs about hastening death (4 mental. Preoccupation with death predicted
health and (n=643-1994; n=575- items); health status; religious by HADS, Calvinist membership, support
demographics. 1995; mean age 73). beliefs; HADS-hospital, anxiety from religion, education, neuroticism. Fear
depression scale; Eysenck pers. of death predicted by neuroticism, low men-
scale; life satisfaction. tal health and lower age. Fear of the dying
process predicted by HADS-score, neu-
roticism, number of chronic medical condi-
tions, negatively correlated with Calvinist
membership. Hastened death explained by
low religious belief, not Calvinist member-
ship or HADS-score.
Cicirelli Older peoples views Older white and African- Personal interviews, open and Fear of dying was predicted by gender
2002 (31) on death and influence Americans. Varied SES: with standardized measures; de- (women), health (poor), viewing death as
USA of fear of death, mean- 42 white high SES; 26 mographic, SES, fear of death, extinction (neg) and death as a motivator
ings of death, dying low SES; 41 Afr-Am. personal meanings of death, for further accomplishment (neg).
process, family relat- (mean age 84, 80.5, dying process, religious behavior Fear of being destroyed was predicted by
ion, health, religion 77.5; age range 70-97). and feelings, health, morale, low SES, number of dead siblings (neg)
and SES.2 family relations. and deceased children (neg).
Only results from regression Fear for significant others was predicted by
analysis are reported. age (low), number of dead siblings (neg)
and children (neg), and death as motivator
(neg) and as extinction (neg).
Fear of the unknown was predicted by re-
ligiosity (less fear), death as afterlife (less
fear), and death as legacy (more fear).
Williams Attitudes to death 60 Aberdonians Personal interviews and question- Four coherent themes, although some
1990 (32) and illness.3 (70 years +). naires about views of probable fell between more than one theme:
Scotland death. Ritual dying: readiness for death, reunion
with those close before death, fully aware,
affirmation of sanctity of life.
Disregarded dying: natural, quick death,
dying unaware, excluding euthanasia.
Transitional pattern: lifelong preparedness,
quick death, minimize awareness, excluding
euthanasia.
Controlled dying: control over time of death,
full knowledge of ones fate, quick death, re-
union before death.
1Some of the studies cover both death and dying, but are presented here because of their emphasis on the importance of after-death. 2This is a very comprehensive
study and report, with in-depth discussion of views on death; thus, only the results of regression analysis are reported. 3This study is reported extensively in a book
and only the findings related to dying are reported here.

92 Aging Clin Exp Res, Vol. 16, No. 2

 Older peoples view of death and dying

chological problems, whilst the other variables did not anxiety (27, 31). Similar findings were reported in oth-
predict death anxiety. There was, however, a significant er studies as well; psychological problems, neuroticism
tendency for strong religious beliefs to mean low death (25, 26, 29-31), depression (23, 26, 30), external locus

Table 2 - Studies related to views of death in samples of older people at the end of life.

Author(s) Aims Informants Design, methods Findings

Hinton Awareness and Hospice cancer patients, Semi-structured interviews weekly Awareness The proportion of older people
1999 (33) acceptance of n=76: 34 women, during the last 8 weeks of life. who were certain that they were dying stayed
UK dying during the final 42 men (median age 65; Ratings made on a linear analog almost the same (38-48%), whilst 50%
8 weeks of life. range 33-84). scale for awareness, acceptance, thought it was probable or possible. Only a
Relatives1. mood, anxiety, consciousness. few expected recovery. Age and gender did
not correlate with awareness. Social class,
severity, weakness correlated to awareness.
Awareness and anxiety had a weak correla-
tion, but not depression.
Acceptance increased over time from 38 to
52%. Being troubled by the prospects of
dying fell from 10 to 2-3% in the last 6
weeks. Acceptance was not related to age,
women were more accepting than men.
Social class and weakness had no relation to
acceptance, whilst impaired mental state had.
Patterns of acceptance included: Factual,
death is inevitable; Religious faith, peace, re-
union; Life no longer rewarding time to go;
Completing tasks preparing for death;
Life complete had a good life; Final gains
making most of remaining life; Humour;
Facing situation together; Experience of
others dying.
Langley-Evans Communication 14 patients: 7 women, Ethnography: 7 weeks partici- Death talk talk concerning illness, symp-
and Payne among patients with 7 men (mean age 59; pant observations as an active toms and treatment, stories about illness
1999 (34) terminal disease, range 36-82). member. and death, talk about other patients deaths,
UK open awareness. talk about bereavement, talk concerning
personal mortality.
Form of death talk Mainly light-hearted
jovial, sometimes serious (bereavement), hu-
mor.
Yedidia and Dominant themes in 30 patients: 22 women, Serial semi-structured interviews All acknowledged that their life was coming
MacGregor patients views of 8 men, (range 40-99; (4.2/patient)-ethnographic: to an end. Some desired death, others were
2001 (35) death. 44% above 70 years of - Illness, resistant, and others neutral. Seven motifs
USA age) in hospice home care - Awareness of dying, of participants view on the prospects of
mainly. - Prospects of dying, their death were:
- Process of dying. Struggle motif (Living and dying is a strug-
gle), which seemed linked to their entire life;
Dissonance motif (Dying is not living), felt
positive about their past, which contrasted
with the present; distress;
Endurance motif (Triumph of inner
strength), dealt with difficulties by taking
control, a product of their character;
Incorporation motif (Belief system accom-
modates death), death understandable with-
in their belief system, secular or spiritual;
Coping motif (Working to find a new bal-
ance), instrumental outlook, worked to find
new sources of strength to re-establish equi-
librium;
Quest motif (Seeking meaning in dying), re-
flected and worked to find meaning in their
experiences, life presented itself as even
more meaningful, new opportunities, new
perspectives to be examined;
Volatile motif (Unresolved and unresigned),
contained unresolved issues; patients were
more victims of forces they could not control,
lacked clarity of direction.
1Results not reported here.

Aging Clin Exp Res, Vol. 16, No. 2 93

I.R. Hallberg
of control (28), and low will to live (25) were related to
death anxiety (or fear), whereas the reverse was true for
hardiness (26) and self-esteem (25). Thus, aspects related
to a well-integrated personality seemed to play a pro-
tective role, whilst psychosocial problems meant more
death anxiety. There were no obvious gender differences
in any study except one (31). Depression (23, 26, 30)
obviously highly influenced death anxiety, indicating
the importance of detecting depression in older people.
Also, religious beliefs or other belief systems were found
to relate to low anxiety (27, 28, 30, 31) but not religious
affiliation (29). Social support was found in some stud-
ies (22, 25, 28) to relate to low death anxiety or the loss
of close family members (31); in other studies it was not
included. Attitudes to death varied: wanting it to be
quick or not, and wanting to be aware or not (32).
Few studies dealt with how much older people actually
think about death, and those which did, showed either
that they did so occasionally or often (23), or that pre-
occupation with death was stable and low (30). The will
to live was found to be less pronounced in women,
who were less in favor of prolonging life (25).
Although the studies dealing with thoughts about
death and after-death were different and therefore difficult
to present in a coherent manner, some common or sim-
ilar themes were identified (Table 1, 20-24). This was the
view of death as such, with an accepting attitude, as
something unavoidable, a completion of the life circle, but
it could also evoke very different emotions: anger, sadness
or confidence (20), not worrying (23) or looking for-
ward to death, as in a study from Ghana (21). Another
theme that stood out was the approach to the time span,
connecting the past, present and future, including after-
death (20-23). Death was spoken about in relation to so-
cial circumstances, relationships having negative as well as
positive connotations (20, 23) for instance, being a bur-
den, dying alone, worries about what would happen to
survivors, no-one coming to the funeral, or joining the
dead spouse, and providing continuity of heritage. The life
span perspective, looking back, emerged in some studies
(20-23) and was spoken about in terms of connecting,
completing, continuity, or establishing time boundaries,
which had to do with the entire life but also stretched in-
to the future, that is, after death, and thus took on a more
existential meaning, connecting generations to each oth-
er (20-23). The circumstances under which death oc-
curred had to do with whether it was at an appropriate
time, with maintained independence, quick or over a
period of time, and both could be favored (20, 21, 23,
32). Poor health and having lost those close by drove peo-
ple towards death (20, 23, 31). Making the most of the
last period of life was emphasized (20). Thoughts about af-
ter-death had to do with religious beliefs, being admitted
to heaven or not, silence or loud noise everywhere,
doubts of an afterlife existence, reunion with loved ones
94 Aging Clin Exp Res, Vol. 16, No. 2
or after-death as a punishment or reward, but also with
the fear of extinction, thinking about autopsy, vacuum, be-
ing treated with dignity after death, preserved integrity,
treating ones belongings with respect, and the importance
of feeling that one belonged, the continuity between
generations (20, 21, 23, 24, 31).
Only a few studies dealt with death in people at the end
of life (33-35) and samples included a wide range with re-
gard to age (Table 2, 33-35). In contrast with studies re-
lated to older people, not in the end-of-life phase, these
studies dealt mainly with the acceptance of, and the ap-
proach to death (33-35). Awareness of closeness to
death differed in one study in which 40-50% were certain
(33) and awareness was shown indirectly as small talk (34),
whereas in another study all acknowledged that their
lives were coming to an end (35). Death talk in commu-
nication between patients in a palliative unit indicated
open awareness, i.e., death was talked about as part of
their social life (34). Awareness showed an association
mainly with health status, but not with depression (33).
Patterns of acceptance resembled findings from the stud-
ies presented in Table 1, and included approaching death
as a fact, life no longer rewarding, preparing for death by
completing tasks, looking back at a good life, and facing
the situation together with those close by (33). Analysis of
ways of approaching death was found to relate to previ-
ous life strategies and could mean approaching death be-
ing distressed or seemingly not distressed. These motifs
were living and dying as a struggle, distress in that dying
was not living, taking control, instrumental outlook,
meanings found, or unresolved issues that made death and
dying chaotic (35).
Views of dying in people in the end-of-life phase
or not (36-52)
Like studies about death, in those about dying in old-
er people, not in the end-of-life phase, some common
themes were identified, although they took on different
meanings for different people (Tables 3-4, 36-52). These
had to do with control, directly or indirectly spoken of (36-
41), who should take decisions when the time comes (38-
44), awareness (37), being prepared (36, 37, 42, 43), dig-
nity or being treated as a whole person (42-44), achiev-
ing a sense of completion (42, 43), family (41, 42, 44),
and the circumstances under which end-of-life care was
provided (40, 41), especially symptom management (37,
40, 43) and not prolonging life (39-41), outcome of
treatment should be the end-point, not treatment per se
(41), and also wanting to care for themselves or being in-
volved in other peoples lives (41, 42).
There were variations with regard to older peoples at-
titude to advanced care planning, being aware or not, and
a quick versus prolonged death, which seemingly had to
do with completing life and whether to take control over
decisions oneself or delegate them to others, as well as
 Older peoples view of death and dying

Table 3 - Studies related to views of dying, the end-of-life phase, in samples of older people not in an end-of-life phase.

Author(s) Aims Informants Design, methods Findings

Carrese et al. Elderly patients view 20 chronically ill: Ethnographic study. Personal in- Respondents spoke about future differently:
2002 (36) on advanced care 16 women, 4 men, terviews regarding future illness - Uncertain future, which they were un-
USA planning. (mean age 86). and end-of-life care. Thoughts willing to plan for or even contemplate.
about it? Planned for? How should - A time when death is near and certain
others know what to do for you? more likely to plan for and discuss.
How do you think about these - The event of death itself for which they are
issues? likely to have made arrangements.
Themes: Considering the future, contin-
gencies of serious future illness, living in the
present, final arrangements for death, ad-
vance directives, views of the future.
Vig et al. Attitudes of older 16 people with non- Personal interviews: What are Current life values cannot be extended to
2002 (37) adults about end of life. terminal heart disease or the most important things in your end-of-life preferences. Aspects contribut-
USA Can current values be cancer: 2 women, 14 men life right now? What would you ing to good or bad death: suffering (inclu-
extended to end-of-life (range 60-84). consider a good or bad death? ding pain, cancer, feeling messy); quick vs
preferences? Questions of health status, prolonged death, aware vs unaware, pre-
symptoms, QOL. pared vs unprepared, alone vs families/
friends, control vs dependency, hope vs
anger, savings.
Kelner Attitude to exert 38 hospitalized patients: Personal interviews. Thoughts of Two approaches: activists (n=27) and dele-
1995 (38) control over end-of-life 25 women, 13 men control over end-of-life decisions. gators (n=11).
Canada decisions. (range 65-85+). Views on control over decision- Activists had higher socioeconomic status,
making. Preferences when time were middle class, rejected the idea of eu-
comes. View on withdrawal of thanasia and assisted suicide, favored with-
treatment, euthanasia, holding and withdrawing treatment, wanted
physician-assisted suicide. to obtain control, decided for themselves
when QoL was too low, but also when to go
on living.
Delegators delegated decisions to their physi-
cians, God or fate, more often married.
Cicirelli Views on various end- 447 healthy elders: Structured interview; 17 decision Three factors: Maintain (continue to live,
1997 (39) of-life decisions. 330 women, 117 men scenarios with 7 options each. not withholding treatment); Others (some-
USA (mean age 72.1; range - Personality, one else makes end-of-life decisions); End life
60-100; 292 whites, - Death anxiety, (suicide, voluntary euthanasia).
155 blacks). - Life values, Eight sub-groups, of which four cover
- Locus of control, 59% of the sample:
- Self-esteem, A. Little desire to prolong life, little de-
- Depression, sire to let others make decisions, do not
- Life satisfaction, actively wish to end their lives.
- Loneliness, B. Actively wish to end their lives, not to
- Life event stress, prolong them; others should not make
- Social support. decisions.
C. No desire to prolong life and no desire to
actively end life, would allow others to make
decisions.
E. Want to prolong life, no wish to actively
end life, not letting others make decisions.
Group C older than A, B and E; groups A,
B had greater fear of death than E. Self-es-
teem higher for group E than C.
Wilson Preferences of know- 49 seniors: (range 60-85 Personal interviews: Two concepts identified:
2000 (40) ledgeable senior citi- years old), all having past - Please tell me about your expe- 1. Dependency while dying: Quick death
Canada zens about end-of-life experience of providing rience with death or dying. saves others from the burden. Availability
care. end-of-life care. - What do you think is the best of others determines where to die as well
Gender not stated. place and type of care for senior as whether living alone or not.
citizens during the last days of 2. Appropriate end-of-life care: Home is
their life? the optimal place to receive end-of-life care,
otherwise equally distributed between acute
hospital and long-term care facilities. Care by
people who know and care for the person;
Allow death to occur; Care that meets needs;
No treatment to extend life; In control of de-
cision-making.
Rosenfeld et al. To identify the desired 21 informants with prior Personal interviews focusing on Three major themes:
2000 (41) features of end-of-life. experience of end-of-life personal narratives of serious - Factors patients and families weigh in
USA decision-making: illness, with probing of how deci- treatment decisions;
81% women, 19% men. sions were made and by whom, - The manner in assigning decision-mak-
All had completed advance clinical scenarios including illness, ing authority;

Continued

Aging Clin Exp Res, Vol. 16, No. 2 95

I.R. Hallberg

Table 3 - Continued

Author(s) Aims Informants Design, methods Findings

Rosenfeld et al. directives (mean age 83; interventions and prognoses. - The role of caring behavior in end-of-life de-
2000 (41) range 72-92), mainly Content analysis. cision-making.
USA white. Outcome, not treatment, guides treatment
preferences; valued life. Advanced age is
relevant in treatment considerations; per-
sonal issues, natural life span.
Decision-making authority: given to both
physicians and families based on their re-
spective areas of expertise.
When functional recovery is not possible
precedence to families; caring during serious
illness; not burden to loved ones; desire to
provide care for a loved one.
Steinhauser et al. Descriptions of good Elderly, staff, chaplains, Grounded theory. Focus groups - Pain and symptom management.
2000 (42) death. volunteers, family mem- and personal interviews, 3 - Clear decision-making, empowering
USA bers1, 14 patients, in all patients groups, 1 group of patients and involving them in decision
75 participants, 4 bereaved bereaved family members. -making.
family members. Discuss their experience of death - Preparation for death; knowing what is
64% women, 36% men of family members what made to come.
(age of entire sample those deaths good or bad. - Completion: meaningfulness, spirituality,
26-77). life review, resolving conflicts, saying good-
bye.
- Contributing to others.
- Affirmation of the whole person.
Steinhauser et al. Factors considered at 340 seriously ill: Mailed survey using 44 attributes Considered important by more than 70%
2000 (43) end of life by patients, 78.2% men (mean age of quality of end-of-life based on of entire sample were 26 items related to:
USA families, physicians 68 years). findings from Steinhauser et al. pain and symptom management, prepa-
and other care provi- (42). ration for death, achieving a sense of com-
ders.2 pletion, decisions about treatment prefer-
ences, being treated as a whole person.
Patients emphasized being mentally aware,
having funeral arrangements planned, not
being a burden, helping others, and coming
to peace with God more than physicians.
Leichtentritt and To reveal values that 19 elderly, snowball Hypothetical scenarios: withold- Four life domains: Physical-biological; Social-
Rettig would have attention technique:11 women, ing treatment, active euthanasia, psychological; Familial; Societal with cen-
2001 (44) when considering 8 men3 (range 65+). physician-assisted death. tral values: competence, integrity, loyalty,
Israel end-of-life decisions. legacy. Transcendent values: dignity, quality
of life, quality of death.
1Reporting only patients perspectives. 2Only patients perspectives are reported. 3Also 28 family members.

views of various end-of-life decisions (Table 3, 36-44). Re-
spondents did not necessarily share the same view of how
they wished the end-of-life phase to unfold or to be han-
dled. The most uniform directions were those stating no
life prolongation, being respected, the importance of in-
tegrity, being approached as a whole person, living one
day at a time, having the opportunity to be involved
with others, caring for others, and the balance between
having dear ones close by but not being a burden to
them. Patients put more emphasis than physicians do on
preparation for death, coming to peace with God, and not
being a burden, which indicates that some aspects may be
overlooked in the health care system (43). As in those
studies related to death, completion was also brought
up in relation to dying, and symptom control was brought
up in studies related to death.
Studies about dying, including people in the end-of-life
phase, had samples with a broad age range, making
conclusions specific to older people hard to establish. Al-
though various foci were applied, some areas stood out
(Table 4, 45-52): physical problems, social network (pos-
itive), and depression or emotional distress having a neg-
ative impact on this last phase of life. Fractured dignity
turned out to be rather uncommon and was predicted by
being a burden to others, dependent, in pain, and
changed in appearance (45). Quality of life over the last
year of life showed no overall deterioration over time, but
improvement in the physical domain and decrease in
the existential domain. Overall, the lowest score was on
the physical domain (46). Desire for death was low, but
closely related to depression (47). Apart from depression,
pain and low level of family support explained the desire
for death (47). Desire to hasten death (48, 49) was also
closely related to clinical depression, severity of depressive
symptoms, hopelessness and low social support, and
physical functioning contributed to this desire to hasten
death (52). The wish to hasten death was prevalent in 14-
17% (48, 49) and closely related to physical symptoms,

96 Aging Clin Exp Res, Vol. 16, No. 2

 Older peoples view of death and dying

Table 4 - Studies related to view of dying and end-of-life phase in older people at the end of life.

Author(s) Aims Informants Design, methods Findings

Chochinov et al. To identify to what 213 terminally ill patients Sense of dignity 0-7; symptom 7.5% reported loss of dignity as of great
2002 (45) extent dying people with cancer: 55% women, distress, 13 items; McGill painconcern, 54% reported no loss of dignity,
Canada maintain their sense 45% men (mean age 69; questionnaire; ADL capacity; and 30% minimum loss of dignity.
of integrity, and how SD 12.6). QoL measure; emotional state, Those with a fractured sense of dignity
disease-specific and desire for death, anxiety, hope-
were younger, had a stronger desire for
demographic variables lessness, will to live, burden to
death, bowel concerns, appearance,
relate to dignity. others, social support. anxiety, depression, hopelessness, lower
Comparing those with and will to live, a sense of burden, low QoL,
without intact sense of dignity.
and low life satisfaction after controlling for
age. Multiple logistic regression showed ap-
pearance, burden to others, requiring as-
sistance with bathing, pain intensity, location
of care (i.e., inpatient) to predict a fractured
sense of integrity.
Lo et al. Evaluation of QoL 58 patients: 22 women, Personal interviews. McGill QoL Mean total QoL score 7, lowest on phys-
2002 (46) during last years of life. 36 men (mean age 60; scale two weeks before death and ical domain 5.9 (from 4.8-7.2 on different
Hong Kong SD 15; range 17-86). on admission, 0-10 scale (10 sub-domains); existential 6.0 (5.4-6.1 on
positive). sub-domains), support 6.6 (6.5-6.8 on sub-
domains), psychological 7.8 (6.9-8.8 on
sub-domains), sexuality 8.4. Over time,
mean total QoL score remained the same,
with a trend toward improvement in the
physical domain, deterioration in the exis-
tential domain; others remained the same.
Chochinov et al. Desire for death in the 200 terminally ill: Semi-structured interviews incl. Desire for death above 4 (moderate) was
1995 (47) terminally ill, and rela- 103 women, 97 men SADS (Schedule for Affective present in 8.5%, 55% reported no desire,
Canada tion to psychiatric (mean age 70.9; SD 10.6; Disorders & Schizophrenia); Do 30% slight desire, and 6% mild desire.
disorders. range 31-94). you ever wish that illness would No demographic differences or in religious
progress more rapidly so that affiliation. Strong association with
your suffering could be over depression in those with a strong wish to die
sooner?; Beck depression scale; (58.8 vs 7.7%) compared with those with
Social support; Pain intensity; no desire or fluctuating wish to die.
Karnofsky scale. The wish to die was related to pain, not to
functional ability or social contacts but to
the level of satisfaction, support also showed
a weak correlation.
Three main variables explained the desire for
death: depression, pain, and low level of
family support.
Kelly et al. To identify factors 72 hospice and home Semi-structured interviews inclu- No wish to hasten death in 59%, moderate
2002 (48) associated with the palliative care patients: ding a modified wish-to-hasten- in 27%, and high in 14%. Central themes
Australia wish to hasten death. 37 women, 35 men death scale, and 8 questions were negative or positive experiences of
(mean age 61-71; about illness experience, caring health care, demoralization as an impact
SD 13.9). experiences, euthanasia, life on patients, support vs burden as impact
review. on others, and positive reflections on life
as a whole. Those with a high wish to hasten
death had greater concerns with physical
symptoms, psychological suffering, saw them-
selves more as a burden to others, higher lev-
els of demoralization, and less confidence in
symptom control, less social support, less life
satisfaction and fewer religious beliefs com-
pared with the other two groups.
Breitbart et al. Prevalence of desire 92 terminally ill cancer Interviews including SAHD 17% reported a high desire for hastened
2000 (49) to hasten death and patients: mean age 65.9; (Structured clinical interview for death and 16% major depressive symp-
USA correlation to this SD 15.6; range )50 (20%): DSM-IV), Hamilton depression toms. Hastened death desire was associated
desire. to above 85 years of age rating scale, Becks depression with clinical depression and depressive
(9%), above 65 years scale, social support, spiritual symptom severity as well as hopelessness.
(56%). well-being, pain, memorial sym- Social support and physical functioning
ptoms scale, Karnofsky scale, contributed slightly to the wish to hasten
McGill QoL. death, whilst depression and hopelessness
had the strongest explanatory value.
Engle et al. To describe and com- 13 nursing home residents: Ethnographic, personal interviews 1. Dying was reflected in: thinking of
1998 (50) pare experiences, 6 women, 7 men (mean (1-4 times): How have things dying, having little or no fear of dying;
USA needs, priorities and age 77; range 54-91; been for you?, What would finding comfort in religious faith.
concerns during living- 8 black, 5 white). make things better?, What Afterlife envisioned as a better place.
dying interval. comforts you?, What does 2. Pain; black people consistently
dying mean to you?, Do reported moderate to severe pain, whilst
you ever think of passing on? white rarely reported pain.

Continued

Aging Clin Exp Res, Vol. 16, No. 2 97

I.R. Hallberg

Table 4 - Continued

Author(s) Aims Informants Design, methods Findings

Engle et al. 3. Nutrition incl. no appetite, swallowing

1998 (50) difficulties, no pleasure in eating, supple-
USA ments or soft food, fear of tube feeding.
4. Religion: trusting loving God, definite
sense of right and wrong, Golden Rule, im-
portance of attending church, little or no
fear of dying.
5. Care giving: the need to be of service to
others, adopting residents to care for, iden-
tifying others worse off.
6. Care receiving: staff doing extra activities,
using bantering to promote changes in be-
havior, responding slowly to requests, unable
to understand physicians.
Coping; anger, withdrawal, direct informa-
tion, humor, talking with staff. Residents
focused on quality of living rather than on
dying.
McKinlay Patients experience 6 hospice patients: Personal interviews:Whats your The circle of care: a pattern of lived exis-
2001 (51) of hospice care. 3 women, 3 men experience of care at the hospice, tence. Identity was central, i.e., being a
New Zealand (range 58-79). what service have you been person to themselves and to others.
At least one prior hospice involved in? Eight themes were generated: keeping
inpatient period. control; chosen isolation; being safe; relin-
quishment and relaxation; mortality aware-
ness. Patients interpretation of staffs actions
manifested in being watched, caring qualities,
humor. Environment and philosophy of care
also surrounded these themes.
Singer et al. To identify and 3 patient groups; Qualitative interviews, content Domains extracted from analysis in long-
1999 (52) describe quality end- Long-term residence analysis, interview guides differ term care. Receiving adequate pain and
Canada of-life care. (mean age 73.6; range for each group mainly focusing symptom management (39.5%), avoiding
65-85). Male: 13% groups on control of decision-making, inappropriate prolongation of dying (65.8%),
of dialysis and HIV not personal preferences, views of achieving a sense of control (47.4%), relie-
included. withdrawal or termination of ving burden (34.2%), strengthening rela-
treatment. tionships with loved ones (31.6%).

psychological suffering (including demoralization, low DISCUSSION

trust in symptom control, low life satisfaction), experi-
encing oneself as a burden to others, including less social
support and fewer religious beliefs, than those not want-
ing to hasten death (48).
As in the studies listed in Tables 1-2 presenting aspects
related to death, aspects related to dying also emphasized
integrity, being regarded as a person, relationships which
meant a balance between being close and being a burden,
control, and symptom management, as well as thoughts
about the afterlife. Fear in the end-of-life phase was re-
ported to be rare, comfort was found in religious faith, and
the afterlife was envisioned as a better place (50). Reac-
tions varied from anger, withdrawal and humor, to talking
with staff about their situation (50). Preserved integrity
(51), being in control (51, 52, 49), relationships with those
close by (50, 52), but also relieving them of being a bur-
den (52), chosen isolation (51), being involved oneself in
caring for others and feeling cared for (50) were all men-
tioned. Symptom management was also important, es-
pecially pain and nutritional problems (50, 52), being safe
(51) and the care atmosphere (51). Inappropriate pro-
longation of life should be avoided (52).
This review of the literature confirms views from ear-
lier research (7, 53) that there are few studies focusing
solely on older people and their view of death and dying.
Such studies were often muddled by samples with a wide
age span, especially when including people at the end of
life, and it was not always possible to detect the views of
older people as opposed to younger ones. Few studies
had samples with very old people only, or separated the
very old from the young old. As people live longer, it
seems even more important to recognize the fact that the
time span from retirement to the end of life may be
long, thirty to forty years, and that during these years
there are periods marked by enjoying life, emerging dis-
eases and, later on, decreased functional ability, and dy-
ing and death (54). The fact that old age is made up of dif-
ferent phases that need to be addressed in research has
been recognized before (55) and is likely to be valid also
for research on older peoples death and dying. Also, very
few studies seem to have been performed with samples
from the European countries which is noteworthy,
since there are very probably great cultural as well as his-
torical differences between North America and Europe

98 Aging Clin Exp Res, Vol. 16, No. 2


which may influence older peoples view of their death
and dying. Also, within Europe one may expect great dif-
ferences, because of the different culture, history and
political systems of the various countries. Thus, because
of the lack of studies dealing with older peoples view of
death and dying, heterogeneity as regards age in these
studies, and heterogeneity with regard to research ques-
tions and samples, the findings of this review may serve
mainly as inspiration for further research, although some
findings are thought-provoking and may serve to inspire
clinical practice as well.
It is noteworthy that so few studies considering the old-
er persons own account of death and dying seem to have
been performed, although gerontology as well as geriatric
research has developed rapidly over the last century.
Bauman (56) suggested that death is a problem for the
post-modern society because its underlying promise is the
opposite, the promise of the indivisible sovereignty of rea-
son. He stated that it is difficult for human beings to
understand death, since it represents the ultimate vacuum;
we cannot think beyond this, since thinking is part of
imagining and death becomes a secret, which we protect
with silence. Because we push death away from our-
selves, we create a taboo around talking about it. Could it
be that it is still taboo to talk about death, or that research
related to aging and older people is too preoccupied
with an everlasting life, thereby denying death and dying
as part of life? The results of various studies are quite con-
sistent, in that old people do not mind talking about
their forthcoming death and dying, although this is not
without pain. However, the review indicated that older
people also wanted to be alive until the last minute of
their lives, suggesting that there is a delicate balance be-
tween recognizing approaching death and recognizing as-
pects that bring about the feeling of still being alive.
Kaufmann (57) stated that end-of-life care is still not ca-
pable of balancing the problem of foreseeing when death
is approaching and providing high-quality end-of-life
care, recognizing approaching death rather than pro-
longing life. Researchers from the fields of gerontology as
well as geriatrics and geriatric nursing need to take up the
challenge and enter this field of research. It would be es-
pecially helpful if aspects of death and dying were included
in ongoing longitudinal studies on aging and thereby
overcome the problem of understanding whether changes
in our views of death take place as time goes by, which
cross-sectional studies cannot answer.
Studies related to death versus dying
There was no distinct boundary between studies about
death and those about dying, which may be understand-
able from the perspective that dying precedes death.
Yet this is problematic, in that older peoples precon-
ceptions of death remain mainly unknown and become
hidden in problems related to dying. It is reasonable to as-
Older peoples view of death and dying
sume that peoples view of death affects the existential and
psychosocial part of dying. Very few studies dealt with old-
er peoples view of death from an emic (indigenous in-
terpretation) perspective. Most of them dealt with topics
such as death anxiety, fear, or hastening of death, which
is different from investigating older peoples view of
death. There were, however, some intriguing findings in
the few studies, mainly regarding narrations about death.
These represented positive as well as negative connota-
tions of death and after-death, not necessarily tied to
religious beliefs. For instance, sometimes the afterlife
was spoken about in terms of punishment or reward, con-
tinuity of heritage, ancestorhood facilitating being re-
membered or being forgotten, being abandoned at the fu-
neral (no-one coming), reunion with loved ones or vacu-
um, stillness, darkness or extinction. These studies demon-
strated in a sense what Bauman (56) called striving for
immortality, which may take on different guises, perhaps
related to faith and culture. It had, however, both negative
and positive aspects which probably have implications for
dying. Cicirelli (24) found a significant relationship between
fear of dying and the meaning of death; those holding
views of extinction were more fearful than those not. Per-
haps an even stronger research focus on views on death
with carefully selected samples with regard to age and dis-
tance to death may reveal new aspects enhancing the cur-
rent knowledge base as well as practice.
Completion of life a life span perspective
Although the results of this review present very dis-
parate findings, mainly because of different research
questions, methods, samples and design, some themes re-
lated to death were present across the studies: these
were in particular emphasis on completion of the life cy-
cle and the life span perspective when facing imminent
death, and this stretched beyond death. This was espe-
cially present in studies on death but also in those related
to dying. Completion of the life cycle as well as a life span
perspective was mainly positive, comforting in the face of
death, but also connecting generations and as part of a
higher meaning in their lives. In some studies it was also
put forward in negative terms, as having lived a worthless
life. These findings are in line with the theory about ego
integrity proposed by Erikson et al. (18), suggesting that
the last phase of life has to do with the struggle between
despair and integrity and results in wisdom, and also in re-
solving earlier tasks or demands. Interestingly, this was al-
so supported in a meta-analysis (27), showing that ego in-
tegrity was strongly related to low death anxiety, and in a
study about the motifs of participants views on the
prospect of their death (35). The life span perspective
seems to be connected to the concept of completion, and
has to do with death being faced in the light of the entire
life and how life has evolved. This resembles the concept
of life review put forward by Butler, who suggested that
Aging Clin Exp Res, Vol. 16, No. 2 99
I.R. Hallberg
older persons review their lives in the face of approach-
ing death. However, although the universality of this
concept has been questioned (58) and investigated in
older people, no strong evidence has been found for it.
The life span perspective when approaching death was,
however, also different from the concept of life review, in
that it was a spontaneous evaluation of life that brought
about a feeling that life was completed and had been
worthwhile or the opposite. Completion of life was put
forward in various ways but with a common core of
meaning; connections, completion of the life circle, a wel-
come visitor that will bring peace and rest to a strenuous
life, completing tasks, peace, reunion, and seeking
meaning in dying. The importance of entering into a
phase of completing life has been put forward as an
end-of-life task by Byock (59). He suggested that devel-
opmental landmarks and tasks for the end of life were to
achieve a sense of completion of, for instance, worldly af-
fairs, relationships with the community, and relation-
ships with family and friends. Completion thus involves
evaluation of life to achieve the feeling that it has been
completed, i.e., a life span perspective and life review.
However, not all old people review their life positively.
berg (60) suggested that old age is closely intertwined
with previous life and that this stretches into the future, to
death. From a thorough study of Finns he presented a list
of six ways of life, of which some were negative: the bit-
ter life, and life as a pitfall. This was also shown in the
study about participants views of the prospects of their
death (35), in which at least the volatile and dissonance
motifs seemed painful. It seems reasonable to believe
that death and dying are experienced in relation to life as
a whole, and thus knowledge about the life span may be
useful for completing life with less fear of death and after-
death, thus supporting the idea that there are some end-
of-life tasks to complete. The meaning of these end-of-life
tasks perhaps needs some deeper exploration to under-
stand the mechanisms and how to achieve completion.
Separating from those close by
Another theme that pervaded the results of the studies
was the impact on, and of the closest relatives, especial-
ly spouses, children and grandchildren. Studies about
death were preferably related to themes like reunion after
death and continuity, as well as the lack of people who
care, as discussed previously. Also, losing ones coevals re-
duced the reasons for staying on, i.e., it was not worth go-
ing on living. However, studies about dying highlighted the
disparity in results that characterized several studies,
even when research questions were similar. There were
two main positions in relation to close relatives: wanting
them close by, including saying goodbye, which also had
to do with timing of death, or not wanting them nearby.
Another common finding complicated this, that of being
a burden to others. The fear of being a burden, especially
100 Aging Clin Exp Res, Vol. 16, No. 2
to those close by but also wanting them close by, was ev-
ident in several studies. It seems difficult to verify whether
there is a true wish to be alone in the dying process or just
to avoid burdening loved ones. Interestingly, there also
appeared to be a strong desire, even at the end of life, to
be useful to other people and thus have a meaningful life
in spite of approaching death. This wish for involve-
ment in other peoples well-being as well as other peoples
involvement in the dying persons life highlights the the-
ories of Disengagement and Objective Self-Awareness. As
in the study by Baugher et al. (61), the studies included
here gave no firm evidence of the idea of disengaging one-
self from others or coping with negative self-awareness by
avoiding others, although this may be so in some cases.
However, the handling of, perhaps, guilt, or the shame of
being a burden on loved ones may play a role in this
process and needs further research. Feelings of being a
burden may also be related to the seemingly fearful ex-
perience of dependency that was prevalent in studies
about dying.
Death anxiety and fear of death and dying
Death anxiety, fear of death and dying, a wish to live,
or a wish to hasten death and its antecedents were com-
mon objectives of research mainly done using stan-
dardized methods, but unfortunately of different kinds. Per-
haps the strongest evidence came from the meta-analysis
(27), although that study investigated only some of the
possible antecedents of death anxiety. Studies about
death anxiety in younger and older people showed indi-
cations that death anxiety decreases at higher ages al-
though, due to the study design, it was not possible to sep-
arate these findings from cohort effects. There were no
firm indications that death anxiety was common in older
people; on the contrary, most studies showed a rather low
death anxiety or fear of death. It is noteworthy that Ci-
cirelli (31) reported a peak in death anxiety in the age
range 80-84, indicating that there is a transition, perhaps
along the lines of the theory of Erikson et al. (18).
Death/dying anxiety or fear of death/dying appears in a
complex interaction, especially of aspects most probably
related to factors such as personality aspects (hardiness,
ego integrity, low neuroticism, external locus of con-
trol), social network, physical problems in the end-of-
life phase, age, and beliefs, including religious beliefs. Most
of the studies did not satisfactorily include all these aspects,
so that the relative impact of each of them cannot be es-
tablished. A causal model was tested in a sample of hos-
pice patients at various ages (30 to 89), although only a
few variables of importance were included (age, gender,
length of illness, physical functions) (62). Psychological
adaptation proved to be directly related to social support
and low pain. More research is needed to take these
aspects into consideration as well as ego integrity and per-
sonality, which had strong support for their importance,

not only in quantitative but also qualitative studies, and al-
so in beliefs and views of death per se. Findings also in-
dicated that a particularly sensitive group for observation
is those who have a lifelong unstable personality or, in the
words of berg (60), have lived a bitter life or one
marked by pitfalls.
Another important aspect of fear and anxiety of death
and dying was the fine line between these aspects and psy-
chiatric problems especially depression, but also other
psychiatric problems. It was obvious in several of the
studies that anxiety and fear, as well as a wish to hasten
death or not wishing to go on living, were significantly re-
lated especially to depression. This is not surprising and
perhaps not as straightforward as it may seem. In the pre-
sent study, it was decided not to include the wealth of stud-
ies on suicidal thinking or views of euthanasia, which may
be even more closely related to the prevalence of de-
pression or other problems of a psychiatric nature. Al-
though there is no answer to this, perhaps we must rec-
ognize the fine line between regarding sadness and sorrow
about imminent death and viewing it through a diagnostic
filter, such as depression, psychosis, or the like. Death
and dying are by nature socially, emotionally and exis-
tentially, and in many cases also physically, a painful
separation of oneself from life and entering a vacuum or
afterlife, for which we have no conception that we can
hold for true (56), and sadness and sorrow seem to be a
natural part of this process. This must be balanced against
the likeliness of a psychiatric problem open to treat-
ment. The longitudinal Berlin Aging Study (63) found that,
in the very old, the wish to be dead and suicidal intentions
were related to psychiatric disorders. However, in practice
there is a very fine line in differentiating between the un-
avoidable sadness of approaching death and a treatable
psychiatric disorder.
Worries about dying; control versus dependency
Least surprising was perhaps the strong evidence of old-
er peoples worries about dying, the end-of-life phase.
Themes that appeared in the various studies were the im-
portance of awareness, control, decision-making, depen-
dency, dignity, feeling treated as a whole person and
symptom control; preferably pain and nutrition, not pro-
longing life, as well as leading a meaningful life even at the
end of life and being meaningful to others. Some studies
also indicated that older people were perhaps prepared for
death but not for dying and for end-of-life care. This had
been reported before in a comparative study (USA and
Germany) showing that older people were less likely to pre-
pare themselves for care at the end of life than for death
(64) which is interesting, bearing in mind that they
seem to be more worried about the end-of-life phase
than about death as such. The themes mentioned above
are wide-ranging and deserve a review of their own in re-
lation to older people. However, two themes, which may
Older peoples view of death and dying
be related, will be addressed a little more: dependency and
control, both probably related to the emphasis on being a
burden to others. Western culture is known to value in-
dependence and autonomy highly and, although it has
been stated that it is also part of the culture to accept de-
pendency in children and older people, this may not be so
in the views of older people. It seems important and a chal-
lenge to our society to alter this view of dependency,
bearing in mind that it is a probable component of old age
and end of life and, as population demography changes to-
ward a larger proportion of very old people, dealing with
dependency will be relevant for many people. There is
probably a relationship between the negative connotation
of being dependent and the fear of being a burden to oth-
ers, emphasizing autonomy as the ultimate value of life. Al-
so, the wish to be of value to others may be part of the in-
teraction between dependency and being a burden, as a
way of repaying the help required in old age, and thus even
of being a burden to others and imputing meaning to
the life of the old person. Lawton et al. (65) stated that the
valuation of life is complex and needs to be explored in re-
lation to environment, health and intra-psychic processes.
Perhaps the cultural meanings of burden, dependency
and autonomy need to be explored as to whether they may
hinder the well-being of older people at the end of life and
dependent on others for their last phase.
CONCLUSIONS
This review chiefly demonstrated the lack of research on
older peoples view of death and dying. Although quite a
few studies were included, they were different in many re-
spects and therefore did not contribute to a coherent body
of knowledge. Thus, the knowledge base for providing
high-quality end-of-life care to older people is currently
not strong. Several areas deserve their own review of cur-
rent knowledge available for understanding older people.
However, the review did support the view that older peo-
ple do want to speak about death and dying, and this
should encourage researchers to enter this field, chiefly in
terms of open conversations about death and dying in
the relationship between family doctor and older people.
There is an urgent need for research focusing solely on old-
er people from about the age of 60-65 to 90-100, in order
to understand whether there is a later adaptation and
peaks during which emerging thoughts about death and dy-
ing are most painful. Such research should preferably be
longitudinal, or at least include follow-up studies and com-
bine in-depth studies of older peoples reasoning, with
surveys giving a broader overview of their view of death and
dying. It seems worthwhile to include aspects like the impact
of the life span, the meaning of the completion of life, au-
tonomy, dependency and control, as well as thoughts
about death and after-death, not only from a religious
perspective, but also fear of death and what is meant by fear
of dying. The fact that most people in the Western world
Aging Clin Exp Res, Vol. 16, No. 2 101
I.R. Hallberg
die after the age of 70 calls for better understanding of their
unique situation, and understanding these aspects pro-
vides a knowledge base that can inform practitioners of how
to approach older people about death and dying when they
are in the terminal phase, and how to provide them with
high-quality palliative care.
ACKNOWLEDGEMENTS
The Medical Faculty, Lund University, supported this study. I am
grateful to Ewa Olson, librarian, for efficient support with the data
search, Anna Blomgren, secretary, and Alan Crozier for revising the lan-
guage. Most of all, I am grateful to The Nordic Gerontological Feder-
ation for inspiring me to carry out this review.
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