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Microsoft word - caregiving v3.doc
Encyclopedia of Death and the Human Experience
. Clifton D. Bryant & Dennis L. Peck (Eds), pp. 152-155. Thousand Oaks, California: SAGE.
In its most general meaning caregiving is the providing of what is needed.
Caregiving is used both as a noun and as a verb. As a noun, it refers to the
organisation of healthcare. As a verb, caregiving refers to both ‘taking care of’,
which means that one’s specific needs are met, and to ‘taking care for’, which
means that needs are met with feeling, motivation and engagement. Caregiving
is relevant for the issue of dying because it helps people to die in peace and with
dignity. Since engagement is believed to be the heart of caregiving, care for the
dying is particularly characterised by the care for the emotional impact that
imminent death has on the one who dies. Various ideals of care for the
emotional impact of death have affected the practises of care for the dying. To
explore the ideals of care for the emotional impact of death, a sketch of its
ideological development is presented. From there, three main issues in
contemporary care for the emotional impact of death are explored.
Ideals of care for the emotional impact of death
In ancient Greece, the ideal of care for the emotional impact of death is
particularly reflected in the consolation literature. The main aim of this literature
is to achieve inner-world happiness in spite of one’s mortality. Consolation is
provided through a reflected meditation on the place of death in the cosmic
order, the immortality of the soul, and the intangibleness of death itself. For
example, arguments are presented about the limited meaning of death, about the
fact that we all share in our mortal human condition, and about the pointlessness
of grieving, for it doesn’t help us any further. Care for the emotional impact of
death is thus mainly directed at a consolation for human mortality.
The consolation ideal of care for the emotional impact of death is mainly
found in Stoicism and (neo) Platonism. Both movements believed that a virtuous
directedness of the soul in combination with a renunciation of one’s attachment
to life console for one’s mortality. Although many texts in Greek philosophy
provide consolation, Krantor of Solio (ca. 330-268 BC), Cicero (106-43 BC),
Seneca (4 BC - 65 AD) and Plutarch (ca. 46-120 AD) are the most important
representatives of this genre. At the basis of the consolation literature lies the
conviction that feelings should be guided by reason. The ideal of this care for
the emotional impact of death was to diminish and control one’s grief rather
During the middle ages, the consolation ideal for the emotional impact of death
is complemented by the Christian value of suffering. Through the resurrection of
Christ, death is no longer the end of everything but becomes the step to a
transcendent reality. Suffering is no longer accepted just because of its place in
the order of things, but also for its purifying effect on man’s sinfulness. Besides
heaven and hell as possible places for the afterlife, interest is increasingly paid
to purgatory where the soul awaits its final judgment. The church teaches the
remission of sins through praying, penance and indulgences. The ideal of care
for the emotional impact of death thus becomes directed at the preparation for
the afterlife before God’s final judgment.
The preparation ideal of care for the emotional impact of death did not
conflict with the consolation ideal of the Greeks. Minucius Felix (2nd century),
Tertullian († after 220 AC) and Lactantius († ca. 330 AC) elaborated upon stoic
thoughts. Boethius (480-524 AC) famously integrated the care as a consolation
for mortality with the care as a preparation for the afterlife. Christian
consolation texts are written by St. Paul († in 67 AC), St. Cyprianus († in 258
AC), St. Basil (329-379), St. Gregory (332-400), and St. Ambrose (ca. 337-397).
A late medieval and popular work on care for the emotional impact of dying is
the Ars moriendi.
This work consoles the dying, warns the terminally ill for
wrong mental attitudes and shows how one should pray and communicate with
the dying in order to prepare them for the afterlife.
From the renaissance onwards, the preparation ideal for the emotional impact of
death becomes criticised. Reformation thinkers, such as Luther (1483-1546),
reject the church dogma on the existence of a purgatory and thus the possibility
of repentance after death. For them, one’s faith in the moment of death becomes
crucial. This led to a focus on the death-scene in which the last words of the
dying were thought to be indicative for the quality of the transition to the
afterlife. Humanists, such as Erasmus (1466-1536), claim that Christ, and not
the church, is the mediator between man and God. For them, man has its own
responsibility in defining death. The ideal of care for the emotional impact of
death thus becomes humanised for it addresses the human capacity to assign
The humanisation of death appears in the texts of various influential
authors. For example, Hume (1711-1776) justifies suicide in the case when life
becomes unbearable due to sickness, misfortune and old age. Schleiermacher
(1768-1834) adds to the orthodox and mechanistic otherworldly consolations the
human urge to love each other for we always live in the face of death, and James
(1842-1910) opens new perspectives on personal spirituality and immortality.
The growing diversity of the meanings of death thus differentiated the ideal of
care for the emotional impact of death various sub-ideals - varying from
providing consolation, stimulating penance, bringing about faith, and exciting
the experience of the sublime in nature.
From the late modernity onwards, the growth of scientific understanding
resulted in more hygiene, higher standards of living and lengthening of the
average lifespan. Technological developments, such as artificial respiration,
dialysis and penicillin opened the way to increasing control and postponement
of death. The ideal of a care for the emotional impact of death became both
disregarded and depersonalised. Terminal care often remained unorganised and
the imminence of death was generally not communicated to the dying. In
reaction to these developments, doubt arose about the appropriateness of endless
treatments and new settings for dying - such as hospice and palliative care –
came up. Focussing on the individual needs of the dying person, the ideal of care
for the emotional impact of death becomes directed at the autonomy in dying.
The primacy of autonomy - together with technological progress,
secularization and inner ways of spirituality - forms the context in which present
day caregivers take care for the emotional impact of death. Although the concept
of autonomy only becomes relevant from the 1960’s onwards, its meaning has
been developed since the eighteenth century. For example, for Kant (1742-1804)
autonomy means to act out of free will in accordance with the objective moral
law; Mill (1806-1873) sees autonomy as the subjective freedom of choice
between options; and Sartre (1905-1980) defines autonomy as an identification
and engagement with oneself. These differences have significant implications
for nowadays ideal of care for the emotional impact of death. Three of these
Implications of the primacy of autonomy
Due to the primacy of autonomy, the suffering inherent to dying is increasingly
understood as meaningless suffering. Living in a society where chronic illness is
the main cause of death, the elderly are increasingly subjected to physical and
psychic limitations. Many of them face a slow but certain loss of autonomy,
control and independence. Due to the fragmentation and weakening of religious
meanings of death, this loss of autonomy in the dying process is increasingly
defined as unbearable, hopeless, and degrading. As a consequence, old people
increasingly prepare for a death without suffering.
Increasing is the number of old people who commit suicide. Increasing is
also the number of people arrange advance directives in which they settle
abstention or termination of treatment in case they should be unable to give
informed consent. Termination of treatment in the case of irreversible coma or
persistent vegetative state is heavily debated on the basis of ‘what the patient
would have decided’. Although few countries have legalised voluntary
euthanasia and physician-assisted suicide, many countries face problems in
dealing with these issues. These developments show that individual control of
‘when and how one wants to die’ has become part of the western context of
dying. The ideal of care for the emotional impact of death thus increasingly
implies care for what is considered to be the right moment to die.
The primacy of autonomy changes the relationship between caregiver and the
dying person. The dying expresses the need for help of others, decides what
personal or spiritual path is to be taken and gives meaning to death. The
caregiver is sensitive to the wishes and emotional processes of the dying person
and aims for adequate response. As long as this response is connected to the
autonomy of the dying adequate care is provided. However, the primacy of
autonomy falls short when the dying is overwhelmed by the emotional impact of
death. A one-sided care based on autonomy then risks to loose sight on its most
important goal: to care for the emotional impact of dying in which one’s
Care for the emotional impact of death is often a compromise between
paternalism and respect for autonomy. Too much initiative may result in
misplaced conversations about God and the afterlife or to premature advice. Too
much respect for autonomy may result in letting a person die without adequate
care for the emotional impact of death. Although various care ethicists have
purported to resolve the dilemma by stressing the mutual relationship between
caregiver and the dying person, the problem of autonomy in dying remains
paramount. The ideal of care for the emotional impact of death thus increasingly
implies care for the annihilation of one’s autonomy.
The primacy of autonomy rejects rather than engages with the phenomenon of
dying. The media mostly presents death without connecting to normal
experiences of dying; in both public and private it is taboo to speak about death;
and the societal focus on youthfulness and ambition disregards the vulnerability
and finiteness of life. In healthcare, the focus on treatment leaves little space for
the issue of dying; professionals are supposed not to over-identify with the
dying; and when dying finally occurs it is mostly in hospitals and nursing
homes, that support the dying and their families only to a limited extent. Care
for the emotional impact of dying is thus embedded in a disappearing face of
Generally, engagement largely depends on identifiable mutuality of
experiences - people feel closer or more sympathetic to others when they
recognise their experiences. Since dying normally lacks such mutuality it is
extremely difficult for caregivers to understand what the emotional impact of
death is about. In order to know ‘when to do what’ it is often suggested that
caregivers need to confront themselves with death and dying. Since society
increasingly fails to provide the opportunity for such personal confrontations,
caregivers lack general experiences with death and dying. Therefore, the ideal of
care for the emotional impact of dying increasingly implies care for finding
See also Informed Consent, Death Awareness Movement, Right-to-Die
Movement, Ars Moriendi, Caregiver Stress, Terminal Care.
Beaty, N.L. (1970). The Craft of Dying: A Study in the Literary Tradition of the Ars Moriendi
. New Haven. Yale University Press.
Kassel, R. (1958). Untersuchungen zur Griechischen und Römischen Konsolationsliteratur.
Kubler-Ross, E. (1970). On Death and Dying.
Tavistock Publications. London, New York.
Lewis, M.J. (2006). Medicine and Care of the Dying: A Modern History
. Oxford University
Tauber, A.I. (2005). Patient Autonomy and the Ethics of Responsibility
. Cambridge, MIT
Van den Berg, J.H. (1978). Medical Power and Medical Ethics
. Norton & Co Inc. (Np).
Woods, S. (2007). Death’s Domination: Ethics at the End of Life
. Open University Press.
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