Diagnosing Dying

David Brumley

PCV 2009

My PropositionMy Proposition

There is often an unspoken understanding that a person is dying,

but this tacit knowledge doesn’t 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

careUniversity of Chicago Press 1999 p178

Nicholas Christakis Death Foretold: Prophesy and prognosis in medical

careUniversity 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?

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?

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

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

BWVBWV

• 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 AllenWoody Allen

• “I’m not afraid of dying. I just don’t want to be there when it happens.”

A Culture of Death Denial in Australia?

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 GriefRuth Park: Fishing in the Styx 1993

Denial of Death and GriefRuth 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 don’t know what to say…”

Less Involvement With DeathPat Jalland: “Changing Ways of Death in 20th Century Australia”

UNSW Press 2006

Less Involvement With DeathPat Jalland: “Changing Ways of Death in 20th Century Australia”

UNSW Press 2006

• Demographic change• Religion and ritual• The Great War• Medicine and cure

Demographic ChangeDemographic Change

Religions in Australia1996 Census: http://www.adherents.com/loc/loc_australia.html

Religions in Australia1996 Census: http://www.adherents.com/loc/loc_australia.html

• Christian 70%

• Atheist/Agnostic 16%

• Unknown/Not stated 10%

• Islam 1%

• Buddhist 1%

First World War?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?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

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 DoAbraham Verghese My Own Country NY Vintage Books 1995

Not Knowing What to DoAbraham 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….”

SolutionsSolutions

• Change in Us?– Undergraduate education

• Change in Models of Care?– Dying elsewhere!– Pathways of care

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

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

• Students are worried and uncertain– “I didn’t know any better..”– “I stood there frozen…”– “I felt stumped…”– “I felt so completely helpless…”

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

Undergraduate EducationDelese 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

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 1994-1995Department of Human Services

Palliative Care in Victoria: The Way ForwardOctober 1996

Where do we die?Patients of Victorian Palliative Care

Services 1994-1995Department of Human Services

Palliative Care in Victoria: The Way ForwardOctober 1996

44%

44%

12%

HomeHospitalHospice

Where do we want to die?Ashby M, Wakefield M

Attitudes to some aspects of death and dying…..Palliative Medicine 1993:7:273-82

Where do we want to die?Ashby M, Wakefield M

Attitudes to some aspects of death and dying…..Palliative Medicine 1993:7:273-82

60

21

5.4

2.5

6.2

7.8

0 20 40 60 80

Home

Hospital

Hospice

Nursing Home

Other

Don't Know

PercentagePreferring

In Hospitals: Care Pathways?In Hospitals: Care Pathways?

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

Is the Patient Dying?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?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 PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

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

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

• Comfort Measures– Current medications assessed and non-

essentials discontinued– PRN subcut. Medication for comfort

• Treatment for pain, nausea, respiratory secretions

– Discontinue inappropriate interventions

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

• Psychological Insight– Ability to communicate assessed– Insight into condition assessed

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

• Religious/Spiritual Support– Assessed

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

• Communication– Identify how family/other will be informed of

patient’s impending death– Family provided with Hospice information– GP practice made aware

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn Ellershaw

• Summary– Plan of care explained and discussed with

patient and family– Family express understanding of plan of

care

Liverpool Care PathwayJohn Ellershaw

Liverpool Care PathwayJohn 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…Woody Allen Again…

• “Eighty percent of success is showing up.”