The Dying Odyssey

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The Dying Odyssey

• The 7th National Ecumenical Aged Care Chaplains
  Conference 2007
• Michael Barbato
• barbato_at_iimetro.com.au

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James

• 74 year-old man, happily married. 3 adult sons
• History of refractory prostate cancer with bone
  involvement ?some pain
• September 2007 increasing jaundice X-ray shows
  probable cancer of the pancreas
• Possible treatment options
• Biopsy of cancer, relief of jaundice and on-going
  medical care that includes possible chemotherapy
• No intervention other than palliation and prepare
  for death

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• Death is now harder to predict, more difficult
  to manage, the source of more and more moral
  dilemmas and nasty choices, and spiritually more
  productive of anguish, ambivalence and
  uncertainty
• Daniel Callahan

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(No Transcript)
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• Dying has become..
• institutionalised
• secularised
• medicalised
• bureaucratized
• Beverley McNamara
• Fragile Lives, 2001

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• The drive to prolong life and maintain
  homeostasis has become so deeply entrenched, it
  takes precedence over matters of the soul,
  casting a pall over those who are dying
• Caring for the dying patient
• Internal Medicine Journal,200535636-7

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Fear of death (dying)

• When I fear death I live as if I am already dead
• Sarah Gibson
• Jungian Psychologist

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• Fear of litigation
• or rapprochment

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• An abundance of relatively safe, simple and
  readily available treatment options

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• death is a series of preventable diseases.
• William Haseltine
• CEO Human Genome Sciences

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• at the heart of modern medicine is a conflict
  about the place and meaning of death in human
  life
• Daniel Callahan
• New England Journal of Medicine
• 2000 654-656

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Dying in the 21st Century

• Infrequently acknowledged and rarely used term
• Camouflaged within a complex model of care
• Usually a convoluted, complicated, clinical and
  costly process
• Managed as a symptom rather than a human
  experience
• Devoid of ritual and significance
• The psyche and the soul are often forgotten
• Associated with protracted and complicated grief

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Dying

• Rarely used in reference to the sick
• Unacceptable and ethically incorrect
• Many euphemisms- sick, unwell, battling,
  deteriorating,
• Emphasis on disease process e.g. kidneys are
  failing, heart is weak, cancers not responding
• Failure to acknowledge dying traumatizes death

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Reasons for treatment

• Prolong life (dying?)
• Prevent suffering (whose?)
• Prevent death (living?)
• Research imperative

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Consequences for the patient

• Subjected to a biomedical paradigm
• Danger of being caught in a web of denial, deceit
  and collusion
• Loss of control
• Loss of precious normality
• Increased fear of death
• Little opportunity to prepare for death
• Further suffering for all concerned

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Adults dying in hospital

• 60 had active treatment in progress at time of
  death
• 78 tests in last 48 hours
• At time of death
• 49 had an intravenous drip running
• 27 receiving antibiotics
• 17 receiving chemotherapy
• 7 on a respirator in Intensive Care
• 5 receiving enteral feeds
• 2 had resuscitation at time of death
• S Middlewood
• J Pain and Symptom Manag 2001 22 1035-1041

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• NFR
• Not for resuscitation

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• Smith, Palliative Medicine 1999 13 217-223

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• Smith 1999

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Fork in the Road

• There comes a time when preparation for death
  becomes more important that efforts to prolong
  life

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Models of Care

• Biomedical
• Disease orientated
• Aims to prevent or delay death
• Involves treatment and intervention
• Focus is on curing

• Holistic
• Person orientated
• Accepts the inevitability of death
• Involves being present and listening
• Focus is on healing

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What dying people want

• Physical comfort
• Commitment to continuing care
• Honesty, authenticity and vulnerability
• Treated as a person not a patient
• Time to explore, reflect and review
• Reconciliation
• No gratuitous advice

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Self-reference

• . most important, I found that those around
  me who were not busy running from their fears
  could be my closest and only effective friends as
  death came near.
• Robert Kavanaugh Facing Death

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What does this mean for us

• Look at own issues surrounding death
• Heal oneself
• Abandon roles
• Be present, vulnerable and non-judgmental
• Do not attempt to solve suffering
• If necessary take advocacy role

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Remember

• silence is the language of God, everything else
  is a bad translation
• Fr Thomas Keating

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and

• suffering is an experience to be lived not a
  problem to be solved

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• The crucial ingredient is not the carers bag
  with all its tricks but the holder of that bag
• Ken Wilber
• Consciousness and Healing 2005