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The changing face of death and dying (and grief!)

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Title: The changing face of death and dying (and grief!)


1
The changing face of death and dying (and grief!)
  • Dr Paul Ong
  • The Shakespeare Hospice
  • Warwick Medical School

2
I am
  • not an expert on grief and bereavement
  • but what I can talk to you about is the way in
    which death and dying has changed over the course
    of the past century and the implications that
    this may or may not have for our grieving
    processes
  • My thanks to Prof Elaine MacFarland, Professor of
    History, Glasgow Caledonian University for her
    work on the changing nature of Scottish dying in
    the 20th century

3
To Understand Grief
  • We must understand death and dying
  • Grief is tied up with that most profound rite of
    passage Death
  • Rites of passages are markers of our everyday
    lives
  • Culturally prescribed
  • Lend meaning to the cycle of life
  • Affirm solidarity and meaning especially at times
    of crisis and profound change

4
In the 21st Century
  • Death, and by default grieving, is managed within
    a framework that may have arisen through
    increased medicalisation.
  • We see this in the language that is used, e.g.,
    interventions to facilitate grief and
    bereavement
  • Through time grief and bereavement and dying were
    ordinary events of life that needed no
    conferences and seminars
  • So why do we need them now?

5
How we handle death (1)
  • Is bound up with lots of social and community
    discourses
  • It tells us about our community
  • It tells us about our families
  • Death leaves us with no where to hide
  • Reveals inevitable Truth
  • Exposes and strips away the routines of our
    everyday life

6
How we handle death (2)
  • Death is an irreducible and unavoidable entity,
    and is universal
  • Undermines our sense of safety
  • Our sense of personal identity
  • Exposes the fragility and impermanence of our
    social structures
  • Shakes the foundations of our beliefs or our own
    constructions of the meaning of life
  • IS the ultimate mystery there is a human
    experience of dying but not of Death!

7
Mourning and Grief
  • From one perspective is a lament, a statement
    about the relationship between the individual,
    the collective, his/her society, and intersects
    both public and private spheres.
  • It is a song about the way in which we are of the
    world, bound up in the world and yet must leave
    it all behind.
  • It is the poetry of loss and suffering
  • It is poetry and lament about what has become of
    a loved one

8
Death in different cultures in different times
  • Ancient Finnish
  • For a year after his or her death, the person was
    a vainaja (deceased), without individuality or a
    given name, which the people of ancient times
    avoided using.  A year was, in Finnish society,
    the most important milestone the period of
    mourning, during which a widow was not allowed to
    marry or amusements to be enjoyed in the house of
    mourning.
  • Encounters with the dead in dreams were expected
    during the time of mourning, and subsequently
    feared.  The rituals of death aimed at the
    success of social transference, so that 'the dead
    would not walk at home'.  A flock of waxwings in
    the rowan tree at home was evidence of a
    successful crossing of the border.  (According to
    tradition, it was best to return in the form of a
    bird.)

9
The Batak of the Philippines
  • Tribes actually relocate the entire village if
    one person dies. The Batak would burn the house
    where the dead person had lived, and no one would
    live in that house again.

10
Polynesian
  • In traditional Polynesian society when a person
    dies, all people with the same name as the
    deceased within the tribe have to be renamed!

11
Visible and Invisible Death
  • Much of our contemporary western focus has been
    on an idea that death is hidden - taboo
  • Yet in many ways, it is much more highly visible,
    through state agencies and the public realm in
    terms of reporting or presentation
  • E.g., we know that people have died in a plane
    crash continents away or on the M6, and we are
    obsessed by mortality statistics, from surgical
    mortality to insurance actuarial tables to ONS
    reports of average life expectancies and total
    death statistics in the UK

12
We are cheered
  • by indicators of declining mortality and
    extended life spans.
  • For example, 19th century Scotland total
    mortality was about 80-90,000 a year, declining
    to 70,000 in 1920. Greater decline followed in
    the 1950s to current levels about 55,000
    (McFarland 2007)

13
However,
  • WE STILL ALL DIE!
  • Death is the end result of life and mortality!
  • SO,
  • Bureaucracy and the Government can measure and
    predict death but it CANNOT TAME DEATH!
  • Scientific language of mortality tells us lots
    about death but little about the public and
    personal meanings of death.

14
Take home message
  • Grief and bereavement is a normal part of life
    it is that special expression, from the depths of
    our being, about the personal and publicly shared
    meaning of an inescapable loss and suffering.
  • It is a special and personal expression of the
    mystery of death which both fascinates and
    horrifies us.

15
Most grieving and death rituals
  • in most cultures take a lot or time, give great
    attention to the dead one (even if it is by
    ignoring the dead person!) and are quite
    elaborate.

16
A Hypothesis The journey towards 21st century
dying
  • may begin with the First World War.
  • The huge quantities of dead from the horrors of
    Gallipoli, the Somme and other battlefields meant
    that society could not effect the normal
    elaborate death rituals there was neither space
    nor time
  • Death rituals in nearly all societies tend to
    assume that deaths, though normal, are not an
    occurrence of great frequency and monotony to a
    community. From 1914-1919, the Great War and the
    Flu pandemic killed about 10 of UK males aged
    between 16 and 50.

17
The sheer quantity of dying 1914-1919
  • According to Jalland (2006) - introduced a new
    watershed in the emotional history of death and
    grieving, ushering in a new model of stoicism and
    suppressed private grief, which supplanted
    established forms of Christian consolation
    Paraphrasing by E. McFarland

18
Of grief in that era
  • Wife of Private William Irvine of Kilmarnock
    wrote
  • Had I but seen him at the last,
  • And watched his dying breath,
  • Or heard the last sigh of his heart,
  • My heart, I think, would not have held,
  • Such bitterness and grief.
  • But God had ordered other wise,
  • And now he rests in peace.
  • (1915)

19
Challenging the Christian Ideal of the good
death
  • The changing and bloody nature of modern warfare
    might have undermined our understanding of the
    good death, and of honour in death and combat,
    replaced by a faceless and mindless act of mass
    destruction, devoid of any chivalry or human
    decency.

20
Faceless dying
  • Became something more common and acceptable
    which may have led the way for dying in larger,
    more impersonal institutions.

21
At the turn of the last century
  • 85 of people died at home, with workhouses
    accounting for the rest!
  • Post-WW II Britain has seen the assumption of
    state wide powers to reform health care, housing
    and town planning.

22
The NHS
  • By 1956, just 8 years after the establishment of
    the NHS, 40 of all deaths occurred in hospitals.
    Today, in 2008, 58 of deaths, the majority,
    happen in hospitals.

23
Modern Town Planning and Housing
  • Council housing and new towns or rebuilding of
    old towns after WWII, dispersed old established
    communities.
  • Changes in the social structures and domestic
    ways of life (being a servant in service, having
    servants etc.) meant that dwelling became smaller
    and more compact
  • Result Families became less able to accommodate
    a body prior to burial and also lost traditional
    social networks of support (McFarland 2007).

24
Societal Changes Post-WWII
  • As already mentioned, the smaller homes pushed
    the body out of the house to the funeral home.
  • Cleaning and preparation of the corpse,
    traditionally a role for the women in the family
    or local community became the Last Offices,
    undertaken by female health professionals.
  • Medicine began to take over from the Church as
    the manager of death, moving the management of
    death from a spiritual to a technical and
    scientific frame
  • Undertaking moves from small local service and
    becomes the big business of funeral directing.

25
This impact of dispersing society continues to
this day
  • Handover of the generations

26
The Handover of the Generations
  • BBC (27 October 2005) reports a study by the IPPR
    which suggests that by 2021, 35 of all
    households will consist of one person only.
  • Hospice and end-of life care IS a rapidly
    changing field. Approx. every 7 10 years, a new
    generation of dying come through the doors. E.g.,
    current generation are the tail-end of D-day,
    Blitz generation. In 5 years or so, we will see
    the beginnings of the baby boomer generation.

27
Hospice care for and the Grief of Bridget Jones
and Inspector Morse
  • Institute for Public Policy Research (IPPR) says
    that the projection of 35 solo households by
    2021 will be the most significant change to take
    place in British society for decades.
  • It will impact every person, the environment, the
    economy.

28
Grief and Hospice care for Bridget Jones and
Inspector Morse
  • Fluid relationship structures and dissolving
    family and community structures, the commuter
    culture, also mean that there may not be a core
    unit that many individuals will be able to relate
    to or turn to in times of great existential
    distress however we construe that core,
    family or otherwise.

29
Hospice carein the far (or near??) future??
  • Therefore, currently, anywhere from 54-70 of
    terminally ill cancer patients say their
    preferred place of death (PPOD) is at home
    (Higginson Sen-Gupta 2000, Dunlop et al 1989,
    Thomas et al 2004, Thomas 2005). The government
    is trying to ensure that this wish is met more
    often and in fact may even be seen to be
    encouraging home death, e.g., the upcoming
    end-of-life strategy
  • If more and more of us are living alone, would we
    want to die alone, at home? Will home PPOD
    actually decrease with time over the next 20
    years??
  • How will we grieve in our splendid isolation?
  • No family but more counsellors?? Really?

30
Staying with Grief and Bereavement, and the
Dying, is also to ask questions of Suffering
  • What is Suffering?
  • Does looking after suffering facilitate the
    re-knitting tight bonds of connections between
    community and the sufferers, e.g., the bereaved
  • That is to say what do counsellors represent to
    society?
  • Are counsellors taking the place of broken
    families?

31
Back to square one Thinking about the basis of
human relationships - mutuality
  • To begin to ask questions about suffering and to
    understand suffering, we need to examine the
    nature of human relationships
  • Death and caring for death is distinct from most
    other human activities and their impact on the
    formation and quality of relationships
  • Most human relationships form because of
    identifiable mutuality of experiences that is
    to say, I feel closer or more sympathetic to
    someone because I know or can identify with the
    experience

32
Death is an exclusive experience
  • Exclusivity. Understanding of someones
    experience is based on mutuality. Dying lacks
    this mutuality. Ettema E (2007)
  • That is to say, whatever we think we know of
    dying, we dont till we begin to die ourselves.

33
Insights from TS Eliot
  • The Family Reunion (1939)
  • All that I can hope to make you understand Is
    only events not what has happened. And people to
    whom nothing has ever happened Cannot understand
    the unimportance of events.

34
Therefore,
  • Palliative care looks after an experience which
    is inaccessible to the professionals by and large
    as a genuine personal experience (till we
    eventually meet it ourselves) book or practical
    knowledge of the dying process is NOT the same
    as knowing what dying is
  • In palliative care, we must remember that we only
    THINK we know what dying and suffering is.
  • This is in fact not the same as the experience
    itself. We can only imagine it.

35
Even
  • in Grief and Bereavement care, we must be
    careful, even with personal first-hand
    experience, of thinking we know what grief and
    bereavement is.
  • Worst still, to think there is a correct way to
    grieve or recover form grief.
  • Kubler-Ross amongst others have helped to define
    stages of dying and grieving, BUT WE MUST NEVER
    FORGET THAT THIS IS A VERY PERSONAL AND
    INDIVIDUAL EXPERIENCE OF A PROFOUND MYSTERY!

36
The dying person and society
  • Human kind Cannot bear very much reality. Time
    past and time future What might have been and
    what has been Point to one end, which is always
    present.
  • TS Eliot Four Quartets (Burnt Norton)

37
What End?
  • Thinking of those we look after, there are two
    possible interpretations of the End
  • 1) The knowledge that with Life comes Death
  • 2) The knowledge that experience of suffering is
    a part of life
  • The two are interlinked, knowledge that our lives
    end and that we will lose everything that we
    have, in the material and temporal form, is a
    suffering. Therefore, logically, there is no such
    thing as a suffering free life.

38
TS Eliot on Reality and Suffering
  • I believe the moment of birth Is when we have
    knowledge of death I believe the season of
    birth Is the season of sacrifice
  • The Family Reunion (1939)

39
The nature of suffering
  • Dying and caring for the dying (and actually,
    Good Medicine) is knowing what and when to do the
    what for suffering and this is a very complex
    task why?
  • We all know of someone or have personally
    experienced the way in which the bearing of
    suffering Transforms - BUT, it is cruel and
    inappropriate to say that suffering is good, this
    is pernicious thinking.

40
So what do we do with suffering?
  • If we insist that suffering must be abrogated at
    all costs, then we assume that all suffering is
    bad. Might the proper course of good palliative
    care mean we have to anaesthetise, euthanise
    even, all pain and suffering?
  • Might a too rigid pathways oriented outlook to
    medical care take us down this path? Do we
  • a) Assume that all pain and suffering is bad?
  • b) Assume that all grief and bereavement is
    bad?
  • b) Leave little flexibility for dealing with
    and bearing with anguish and suffering?
  • c) Therefore, might best practice will call for
    the removal of pain and suffering as soon as they
    appear?
  • BUT, what if this may removes the opportunities
    for transformation and growth?
  • What if it avoids suffering all together??
  • In euthanasia, the dying may have escaped, what
    is left behind?

41
In the 21st Century the Germane Questions are
  • How do we care for the dying, the survivors, and
    those who are ill in ways that doctors and nurses
    may not be able to help, which allows us to
  • retain our humanity and be sensitive to someone
    elses suffering without losing ourselves in that
    suffering? De Hennezel (1998)
  • Confront and contain
  • The challenge of accepting the truth that we are
    finite and vulnerable human beings who seek love
    and meaning in the face of death (and loss!) and
    of finding courage and hope in that acceptance.
    Barnard (1995)
  • Suffering too is a mystery it cannot be
    labelled as good or bad! Nobody is saying that we
    should embrace suffering, yet it is also not
    right to avoid it!

42
The Good Death
43
Is this realistic? Dying is a lot like the real
face of Christmas
  • Christmas is a time when families all over the
    country get together and remind themselves of all
    the reasons why they're not together for the rest
    of the year. Perhaps this explains why the one
    thing many, many people want at Christmas is not
    a present, but rather to be absent. Until this
    happens, we all have to learn how to survive the
    sternest test of peace and good will at Christmas
    - the family.
  • Guy Browning The Guardian, Dec. 2001

44
If we
  • cant get it together for Christmas why do we
    expect to deliver a fairy-tale ending at the end
    of life when the stress levels and fractured
    relationships are at least 10 times worst than at
    Christmas time?

45
Delivering an appropriate death
  • Dame Cicely said
  • the whole experience of that the patients
    life was reflected in a patients dying
  • There may be an event which might look like a
    textbook good-death that we are exhorted to
    facilitate in hospice.
  • But whether that has actually happened, or needs
    to happen, or can even realistically happen, are
    different issues.
  • How will survivors feel if they feel that they
    fell short of a good-death?

46
Do think about what you do because
  • The circle of our understanding Is a very
    restricted area. Except for a limited number Of
    strictly practical purposes We do not know what
    we are doing And even then, when you think of
    it, We do not know much about thinking.
  • TS Eliot The Family Reunion

47
To Summarise
  • Grief and Bereavement, their practices and the
    rituals and care we provide for them is a part of
    society, and is NOT immune to cultural and social
    changes.
  • Death is a mystery
  • Loss and Suffering is a part of normal life
  • The Good-Death may become a tyranny
  • Listening to Grief is to listen to an immortal
    song of mankind about how temporary our lives are
  • Attending to dying and grief is in many ways, not
    really about dying is it??
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