J R Soc Med 2002;95:536-538
doi:10.1258/jrsm.95.11.536
© 2002 Royal Society of Medicine
What happens when elderly people die?
Kalman Kafetz FRCP
Department of Medicine for Elderly People, Whipps Cross University
Hospital, Whipps Cross Road, London E11 1NR, UK
E-mail:
kalman.kafetz{at}whippsx.nhs.uk
 |
INTRODUCTION
|
|---|
Death, previously a taboo subject, is now a topic of ordinary
conversation:
not long ago, a person was shown on British television
in the actual dying
process. There is a widespread view that
death can be managed, and that an
‘undignified’
death signifies deficient care. This is erroneous.
In 1963,
when
Hinton
1 looked at
deaths in general wards, he found widespread
distress. Thirty-four years later
the SUPPORT study in the USA
yielded very similar
findings
2: despite
great advances in palliative
care in the intervening period, many dying
patients were still
troubled by pain and other symptoms. Death and bereavement
are
linked, and a perception that care has been deficient can disturb
bereavement
reactions. This article questions some current assumptions,
with
particular reference to dying in old age.
|
DYING AND BEREAVEMENT
|
|---|
The classic model of the dying process described by
Kubler-Ross
3,
involving
phases of denial, anger, rationalization and acceptance, is
shadowed
by a similar model of the bereavement process described
by
Parkes
4. Both of
these models originated in observations
of aware patients with aware relatives
dying of specific, often
malignant, diseases. In elderly people, the processes
of dying
tend to be less clear-cut than in younger people with malignancy.
The
‘dying trajectory’ may last longer, and awareness
may be clouded
by cognitive dysfunction. Exton-Smith found that
41% of the elderly patients
in his study of dying people were
delirious at the time of
death
5. Just as
death may be different,
so too may bereavement. The profound distress
exhibited by many
relatives of critically ill patients in general hospitals is
often
difficult to understand in the context of traditional models
of
bereavement. This may suggest that, when old people die,
a more complex
process is going on than bereavement when younger
people die.
|
DEATH IN OLD AGE—A PROTRACTED AFFAIR
|
|---|
Sherwin Nuland, an American surgeon, has made the point that
death in old
age is often a protracted affair, rather than a
clear-cut process that can
allow patients and those bereaved
to go through the classic
stages
6. He quotes
an elderly patient
as saying ‘Death keeps taking little bits of
me’.
Her physician commented: ‘She saw that with each attack
of
dizziness or fainting or confusion she became a little older,
a little weaker
and a little more tired. She knew that for ten
years or more, she had been
moving step by step towards the
grave.’ Nuland quotes Osler as saying:
‘These people
take as long to die as they did to grow up.’ Nuland
also
observed that fewer than one in five people can have a peaceful
end,
since ‘dying is a messy business’ for which
relatives are
unprepared. He continues: ‘Too often, patients
and their families
cherish expectations that cannot be met,
with the result that death is made
all the more difficult by
frustration and disappointment with a medical
community that
may be able to do no better.’
|
TRAJECTORIES OF DYING
|
|---|
Lynn
7 noted that
function and symptoms at the end of life generally
follow one of three
trajectories—(1) a short period of
obvious decline at the end, typical
of cancer; (2) long-term
disability with periodic exacerbations and
unpredictable timing
of death that characterize dying with chronic organ or
system
failures (some cancers that respond to treatment and then relapse
come
into this category); (3) self-care deficits and a slowly
dwindling course to
death from dementia. The Kubler-Ross concept
of ‘aware death’ can
apply only to the first trajectory.
Relatives who expect aware deaths may
become angry and turn
their anger onto doctors and nurses when death takes
other forms.
Dying people often need psychosocial support, but the potential
for
introducing this occurs only when the dying phase is
identified
8.
This is
not always possible in trajectories 2 and 3. Psychological
stress, through
lack of this support, can spread to relatives
and carers.
|
LIMITATIONS TO HOSPICE CARE
|
|---|
In a study of the dying process in a hospice in the UK, Lawton,
a
sociologist, observed that physical degeneration—which
happens commonly
when elderly people die—causes an inevitable
destruction of the
self
9. A central
goal of the hospice movement
is to enable patients to retain control of their
lives until
death, ‘to live until you
die’
10.
Destruction of
the self makes this goal very difficult to achieve in practice
since
the apathy and withdrawal seemed to stem from declining physical
function
rather than knowledge of impending
death
10. Many
elderly people
view functional decline as a loss of self. Another goal of good
end-of-life
care is dying with ‘dignity’. A desire to avoid
loss
of dignity, which may mean different things to different
people, is a major
reason given by patients in the Netherlands
for requesting
euthanasia
11. Death
with dignity is not always
attainable even with the best possible
care
12. Lawton has
suggested
that the hospice movement has given the impression that dying
can
always be dignified because of its successful conquest of
terminal
pain
9. Many dying
cancer patients, and many more people
dying from the end-result of multiple
pathology in old age,
have symptoms other than pain—such as delirium,
urinary
and faecal incontinence, sores and discharges. These can be
successfully
managed in fit elderly people but become less controllable as
the
body disintegrates. Lawton continues ‘As worthwhile
as the new methods
of pain control have been, the removal of
one problem often leads to new
problems surfacing in its place,
and these latter problems may not be so
readily resolved by
palliative care... it may well be that, in retrospect, the
pioneers
of the modern hospice movement were a little too overzealous
in their
critique of the care of the dying in general hospitals.’
Calls for the principles of palliative care to be applied in acute
hospitals are
proper13. Harris
has noted that ‘the disproportionate concentration of care on those
dying of cancer has created an underclass of dying
people’14.
Nevertheless, it should be understood that patients in hospices and acute
hospitals may be very different with different outcomes, however expert and
caring the medical and nursing management. The likely reason is that pain is
not a predominant part of their dying process. In 1999, the authors of the
final report from the Debate of the Age Health and Care Study Group, under the
auspices of Age Concern, proposed twelve principles of a good
death15,16.
Five of these principles are about control and choice by the person who is
dying. It may not be possible to implement all of these principles when an
elderly person, who has had little control and choice in her life for some
years because of the burden of multiple pathology, finally succumbs to
pneumonia in an acute ward. Yet dissemination of principles such as these can
raise relatives' expectations and increase their distress at a vulnerable time
if these expectations are not met.
|
PREDICTING TIME OF DEATH
|
|---|
In a patient with malignant disease, although the exact day
of death may be
unpredictable, one can normally identify a terminal
phase in which he or she
has not long to live. In the USA, Medicare
funds hospice care (both
domiciliary and inpatient) when death
is likely within six months. The cost to
Medicare of end-of-life
care for people aged 85 and over is one-third lower
than for
people aged 65-75. This may be because more people are dying
at older
ages after lengthy chronic illnesses and long periods
of functional
decline
17; and it
may be the absence of a definable
terminal stage that excludes many older
people from hospice
care. The median estimate of six months' survival of
patients
with congestive heart failure was 54% even within three days
of
death
18 (this study
was published after ACE inhibitors had
been found to prolong survival in heart
failure but before the
increase in the use of beta-blockers). When patients
have cancer,
the impact of death on relatives can be lessened by working
through
a stage of ‘anticipated
bereavement’
19.
This is
not always possible when elderly people die.
|
AN ALTERNATIVE VIEW OF BEREAVEMENT
|
|---|
Seale, a sociologist, has questioned accepted views about the
needs of
dying people and their carers, on the basis of findings
in a nationally
representative sample of 639 adults who died
in the UK in
1987
20,21.
A smaller parallel study compared reports
given by some people with terminal
illness with reports from
relatives after their death. He noted that an
important function
of bereavement processes is to repair the damage that a
death
causes to social cohesion. He referred to other work that describes
the
maintenance of the human social bond as the most crucial
human motive. Dying
is a severance of this bond. He also noted
that many bereaved people who were
interviewed wanted to portray
their actions in a moral light, expressing
concerns about their
moral reputations as part of re-establishing themselves
in the
social order. In some circumstances they used the research interview
to
help them in this process. When Lawton has spoken publicly
about her research,
she has often been approached by people
who felt a sense of failure because
their relative had not died
in the way he or she had expected and hoped
for
9. Seale noted
the
importance of cleanliness and food as part of the social order
of life.
People who feel that social order is threatened by
death may use a concern
with cleanliness and food to emphasize
their attachment to ‘a bounded
secure sense of self’.
Clearly those who do not feel such a sense of
self will suffer
and often become very agitated. Those who observe the effects
of
debilitating disease in people to whom they are close may feel
a
disintegrating sense of self which can release ‘a flood
of elemental
anxieties in a collapse of security about being
in the world. A return to
childhood sensations may be experienced,
or imposed as carers engage in
infantilisation of the elderly’.
Seale points out that many of his
respondents were using the
Kubler-Ross concept of aware death as a
‘cultural script’
to understand their personal experience of the
death of a loved
one. However, this script was most appropriate for those with
a
specific terminal disease. If death was sudden, or associated
with delirium,
it could not be ‘written into’ this
script. Seale found that
relatives whom he interviewed for his
research used the interview to assert
their relationship to
the moral order. They may use complaints in a similar
way. In
a study of complaints to a department of medicine for elderly
people,
relatives were more likely to complain about aspects
of care relating to their
own moral adequacy, if the patient
had
died
22.
|
IMPLICATIONS
|
|---|
The approach in this paper should not be misunderstood as suggesting
that,
in old age, a dignified death is impossible or that relatives
who complain are
not pointing out real issues of care. Nevertheless,
the findings do suggest
that the issues outlined above have
relevance to deaths of patients in general
hospitals and the
bereavement processes of their relatives. By understanding
these
processes, those working in such wards will become more sensitive
to the
feelings of relatives.
Integrated care pathways for dying people—a system aimed at improving
care for people dying in general hospitals, based on dying processes of people
with cancer—may not be totally relevant to people dying from other
conditions23. Even
in cancer, modern psychosocial support provides a broader view than that of
Kubler-Ross, emphasizing intra-individual and inter-individual variation and
cultural differences (such as issues relevant to gay men or black
communities)8.
A common notion is that much of the distress of relatives is due to guilt
for not doing enough for their parents or living up to their parents'
aspirations. It is easy for staff to collude in this and so think less of
relatives; and these thoughts may be unwittingly communicated to the
relatives, provoking antagonism. The idea that bereavement is a disruption of
the social order is similar but involves no criticism. Strategies to
sympathize with relatives who are going through such internal struggles may
help relieve distress. These strategies could include emphasizing the
inevitability of death in old age as a normal part of human existence and the
importance of registration procedures and funeral arrangements in retaining
bereaved people within the social order. In Jewish tradition, following on
from a funeral as soon as possible after death, there is a week of mourning
when there is open house at the home of one of the immediate family. Family,
friends and neighbours congregate in the house, particularly in the evenings
when a short religious service takes place. The atmosphere, while serious, is
rarely filled with gloom unless there has been the shock of a sudden death.
The event is an accepted part of the social and moral order, allowing mourners
to feel that they are part of society, not cut off from it. It helps to fulfil
one of the crucial tasks of mourning as described by
Seale16—‘to
organise the human environment in the face of an otherwise disorderly invasion
by death’. In Hindu contexts, the death of the person is believed to
regenerate the entire cosmic
order20.
Hanson and colleagues interviewed bereaved relatives to find out their
perceptions of what could be wrong with end-of-life
care24. They
concluded that the primary concern of bereaved relatives was communication
failure; discussions that focus on specific treatment decisions may not
satisfy the real needs of dying patients and their families. The approach
suggested here may help communication by explaining some of these real needs.
Acute hospitals must do all they can to maintain the dignity of their
patients; but at the same time they should not excessively raise expectations
by implying that relief is available for every aspect of human suffering.
|
REFERENCES
|
|---|
- Hinton JM. The physical and mental distress of the dying.
Quart J Med1963; 32:1
-21[Free Full Text]
- Lynn J, Teno JM, Phillips RJ, et al. Perception by family
members of the dying experience of older and seriously ill patients.
Ann Intern Med1997; 126:97
-106[Abstract/Free Full Text]
- Kubler-Ross E. On Death and Dying. New
York: Macmillan, 1970
- Parkes CM. Bereavement: Studies of Grief in Adult
Life. Harmondsworth: Penguin, 1986
- Exton-Smith AN. Terminal illness in the aged.
Lancet1961; ii:305
-8
- Nuland SB. How we Die. London: Chatto and
Windus, 1994
- Lynn J. Perspectives on care at the close of life.
JAMA2001; 285:925
-32[Abstract/Free Full Text]
- Shipman C, Levenson R, Gillam S. Psychosocial Support
for Dying People. London: King's Fund,2002
- Lawton J. The Dying Process. London:
Routledge, 2000
- Saunders C. The evolution of palliative care. J R Soc
Med 2001;94:430
-2[Free Full Text]
- Haverkate I, Onwuteaka-Philipsen BD, van der Heide A, Kostense PJ,
van der Wal G, van der Maas PJ. Refused and granted requests for euthanasia
and assisted suicide in the Netherlands: interview study with structured
questionnaire. BMJ2000; 321:865
-6[Free Full Text]
- McNamara B, Waddel D, Colvin M. The institutionalisation of the
good death. Soc Sci Med1994; 11:1501
-8
- Brown M. Principles of palliative care are yet to be applied in
acute hospitals. BMJ2000; 320:1206[Free Full Text]
- Harris L. The disadvantaged dying. Nurs
Times 1990;86:26
-8
- Debate of the Age Health and Care Study Group. The
Future of Health and Care of Older People: the Best is Yet to
Come. London: Age Concern, 1999
- Smith R. A good death. BMJ2000; 320:129
-30[Free Full Text]
- Raphael C, Ahrens J, Fowler N. Financing end-of-life care in the
USA. J R Soc Med2001; 94:458
-61[Free Full Text]
- Levenson JW, McCarthy EP, Lynn J, Davis RB, Phillips RS. The last
six months of life for patients with congestive heart failure. J Am
Geriatr Soc2000; 48(suppl):S101
-9[Medline]
- Zlatiev-Scocard N. Bereavement follow-up; a preventative programme.
In: Michel J-P, Hof PR, ed. Management of Ageing.
Basel: Karger, 1999: 199-207
- Seale C. Constructing Death: the Sociology of Dying and
Bereavement. Cambridge: Cambridge University Press,1998
- Seale C. Theories and studying the care of dying people.
BMJ1998; 317:1518
-20[Free Full Text]
- Kafetz K. New ideas about death and bereavement associated with
complaints by relatives. J Am Geriat Soc2002; 50:978
-9[CrossRef][Medline]
- Ellershaw J, Coackley A. An integrated care pathway for the dying.
Geriatr Med2002; 32:45
-9
- Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care?
Opinions of bereaved family members. J Am Geriatr Soc1997; 45:1339
-44[Medline]
CiteULike 
Complore 
Connotea 
Del.icio.us 
Digg 
Reddit 
Technorati What's this?
This article has been cited by other articles:
|
|
|
|
 
S. Payne, C. Kerr, S. Hawker, D. Seamark, C. Davis, H. Roberts, N. Jarrett, P. Roderick, and H. Smith
Community hospitals: an under-recognized resource for palliative care
J R Soc Med,
September 1, 2004;
97(9):
428 - 431.
[Abstract]
[Full Text]
[PDF]
|
|
|
|
|
|
|
J. Neuberger
A healthy view of dying
BMJ,
July 24, 2003;
327(7408):
207 - 208.
[Full Text]
[PDF]
|
|
|
|
|
|
|
S Kite
Upstream from death
J R Soc Med,
January 11, 2002;
95(11):
529 - 530.
[Full Text]
[PDF]
|
|
|
TOP
INTRODUCTION
DYING AND BEREAVEMENT
