Diagnosing Dying

David Brumley PCV 2009

My Proposition
There is often an unspoken understanding that a person is dying, but this tacit knowledge doesnt result in appropriate action. Resources are inappropriately directed, resulting in suboptimal care of patient, family, other staff members and ourselves.

Nicholas Christakis
Death Foretold: Prophesy and prognosis in medical care
University of Chicago Press 1999 p178

the ritualisation of optimism, although useful in many respects, can also have harmful effects..At its starkest, too much optimism near the end of life may mean patients never see the end coming, never prepare for it, and fight vainly against it.

Why is Dying not Overtly Acknowledged by Doctors and Nurses? Our behavior might reflect a death denial in general society We might have an individual fear of death of a kind which impacts on our behavior We might believe that the death of a patient is a failure on our part, thus making it difficult to acknowledge We might not know what to do when a patient is dying

A Culture of Death Denial in Australia?

Death denial from Sigmund Freud Denial has many meanings, is often adaptive But probably yes

BWV [2003] VSC 173 (29 May 2003) (Gardner re BWV) in Victoria 68 yo with Fronto-temporal dementia No cognitive capacity 3 years No apparent perception of any sensory input Total nursing dependency; hoist PEG

BWV
Husband and family all in accord Request cessation of PEG feeds GP unwilling: may be illegal Husband approached Public Advocate, Julian Gardner Law requires clarification PA applies to VCAT for Guardianship

Woody Allen
Im not afraid of dying. I just dont want to be there when it happens.

A Culture of Death Denial in Australia?

The West Australian 1970
With some exceptions - some individual, some ethnic - our society is steadily moving down a path that is taking us further and further away from involvement with death.

Denial of Death and Grief

Ruth Park: Fishing in the Styx 1993

Our culture knows little about meeting grief head-on. It has come to be our most impregnable tower of Babel, the very symbol of non-communication. We stand about in tears, wishing we could assuage the pain of persons dumbfounded by woe, but mostly we dont know what to say

Less Involvement With Death

Pat Jalland: Changing Ways of Death in 20th Century Australia UNSW Press 2006

Demographic change Religion and ritual The Great War Medicine and cure

Demographic Change

Religions in Australia
1996 Census: http://www.adherents.com/loc/loc_australia.html

Christian Atheist/Agnostic Unknown/Not stated Islam Buddhist

70% 16% 10% 1% 1%

First World War?

Catalyst for change in Australian culture for dying and grieving Mass slaughter - Two out of three uniformed Australians were killed or wounded Total of 60,000 dead Every second Australian family was bereaved

First World War?

The deaths of heroes came at a price for grieving families, since overt expression of individual sorrow was seen to denigrate the national cause.

Medicine: With Cures comes Shame. Death as Failure

Medicalisation of death
Doctors could finally cure This becomes paradigmatic Those who could not be cured were then seen as failures for medicine, as an embarrassment.

Not Knowing What to Do

Abraham Verghese My Own Country NY Vintage Books 1995

Give me a patient with massive GI bleeding or VF and I am a model of efficiency and purpose. Put me at a deathbed, a slow dying, and purpose is what I lack. I, who till then have been supportive, involved, can find myself mute, making my visits briefer, putting on an aura of great enterprise - false enterprise.

Solutions
Change in Us?
Undergraduate education

Change in Models of Care?

Dying elsewhere! Pathways of care

Undergraduate Education
Delese Wear Academic Medicine 77(4);2002:271-277

Students are worried and uncertain

I didnt know any better.. I stood there frozen I felt stumped I felt so completely helpless

Undergraduate Education
Delese Wear Academic Medicine 77(4);2002:271-277

The best learning grows out of direct experiences with patients and families, so that students develop a sense of intimacy and manageable personal responsibility for suffering people.

Maybe we should go Home!

http://www.arc.gov.au/news/media/media_16Jan03.htm

Pat Jalland

in the 1980s, a cultural shift slowly developed, as some people began to express concerns about dying alone in a sterile institution, having their deaths prolonged by medicine, and about dying without dignity."

Where do we die?
Patients of Victorian Palliative Care Services 1994-1995
Department of Human Services Palliative Care in Victoria: The Way Forward 12% October 1996

44%

Home Hospital Hospice

44%

Where do we want to die?

Ashby M, Wakefield M Attitudes to some aspects of death and dying.. Palliative Medicine 1993:7:273-82
7.8 6.2 2.5 5.4 21 60 0 20 40 60 80 Percentage Preferring

Don't Know Other Nursing Home Hospi e Hospital Home

In Hospitals: Care Pathways?

Perhaps we need a simple tool - as simple as a tickchart - to check that weve done all the things we need to do.

Is the Patient Dying?

No cookbook for every diagnosis, but.. Increasing weakness Bedbound Delirium Not taking adequate fluids or oral medication

Dying with Heart Failure?

Previous admissions with worsening heart failure No identifiable reversible precipitant Receiving optimum tolerated conventional drugs Deteriorating renal function Failure to respond within two or three days to appropriate changes in diuretic or vasodilator drugs.

Liverpool Care Pathway John Ellershaw

Initial Assessment and Care Goals
Comfort measures Psychological insight Religious/Spiritual Support Communication Summary

Liverpool Care Pathway John Ellershaw

Comfort Measures
Current medications assessed and nonessentials discontinued PRN subcut. Medication for comfort
Treatment for pain, nausea, respiratory secretions

Discontinue inappropriate interventions

Liverpool Care Pathway John Ellershaw

Psychological Insight
Ability to communicate assessed Insight into condition assessed

Liverpool Care Pathway John Ellershaw

Religious/Spiritual Support
Assessed

Liverpool Care Pathway John Ellershaw

Communication
Identify how family/other will be informed of patients impending death Family provided with Hospice information GP practice made aware

Liverpool Care Pathway John Ellershaw

Summary
Plan of care explained and discussed with patient and family Family express understanding of plan of care

Liverpool Care Pathway John Ellershaw

If these 11 simple steps were followed, the care of the dying in hospital would be improved, at no cost in time and substantial savings in costs.

Woody Allen Again

Eighty percent of success is showing up.