The Dying Odyssey

The 7th National Ecumenical Aged Care Chaplains’ Conference 2007

Michael Barbatobarbato@iimetro.com.au

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

1. Biopsy of cancer, relief of jaundice and on-going medical care that includes possible chemotherapy

2. No intervention other than palliation and prepare for death

“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

Dying has become..•institutionalised•secularised•medicalised•[bureaucratized]

Beverley McNamaraFragile Lives, 2001

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 patientInternal Medicine Journal,2005;35:636-7

Fear of death (dying)

When I fear death I live as if I am

already dead

Sarah GibsonJungian Psychologist

Fear of litigationor rapprochment

An abundance of relatively safe, simple and readily available

treatment options

“death is a series of preventable diseases”.

William HaseltineCEO Human Genome Sciences

“…at the heart of modern medicine is a conflict about the place and meaning of

death in human life”

Daniel CallahanNew England Journal of Medicine

2000: 654-656

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

“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, cancer’s not responding

• Failure to acknowledge dying traumatizes death

Reasons for treatment

1.Prolong life (dying?)2.Prevent suffering

(whose?)3.Prevent death (living?)4.Research imperative

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

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 MiddlewoodJ Pain and Symptom Manag 2001; 22: 1035-1041

NFRNot for resuscitation

Smith, Palliative Medicine 1999; 13: 217-223

Smith 1999

Fork in the RoadThere comes a

time when preparation for

death becomes more important that

efforts to prolong life

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

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

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

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

Remember…

silence is the language of God, everything else is a

bad translation

Fr Thomas Keating

and…

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

solved

The crucial ingredient is not the ‘carer’s’ bag with

all its tricks but the holder of that bag

Ken WilberConsciousness and Healing 2005