Aged Care Service delivery Conference

November 12-13 2013

Creating better service performance management

Catherine Hughes BA, BSW Hons, PhD Unitec Auckland

REVIEWING PALLIATIVE CARE

SERVICES: ONE BORING STORY!

WHAT Ethnography as “Deep hanging out” Understanding the rich textured lives of participants

WHO Participants were 8 people with a life limited diagnosis and 83 family members.

Randomly selected diverse cohort

WHERE Three years in the field. The place where participants are.

ETHNOGRAPHY

WHY You cant know another’s story by asking them to tell you about it, you have to be part of the journey to even begin to comprehend the experience.

WHEN 2005-2009

BUT You will never truly know or understand the journey until it becomes your journey. But you can show up!

WHY ETHNOGRAPHY?

Meeting Joan - her boring story!

Joan’s story of diagnosis

Joan’s prognosis

A person in the context of their life

BEGINNING OF THE STORY

Transformation of identity Enculturation into medical

system Treatment side effects, fighting illness,

change of place.

Person as a uniquely defined cultural being 

Diagnosis & prognosis

Information Gathering & decision making 

No medical treatment

sought Complimentar

y therapies only

All treatment aggressively pursued

by individual including; surgery, chemo,

radiation, complimentary

therapies additional

Medical treatment at request of family Chemotherapy & other treatments

undertaken ambivalently

Path One

Path Two

Path Three

Major Health Crisis: Participant’s reach late stage cancer

Transformation of identity Focus:

Acceptance, living with illness, change

of place

Transformation of identity Focus:

oscillating between fighting and acceptance

All three paths merge & participants experience numerous minor health crises. Visits to medical practitioners, hospice home visits, emergency room, or

admission to Oncology ward

Medical intervention declines. Symptom control becomes the focus

Preparedness for death becomes the issue. Talk about readiness and acceptance

Person as a uniquely defined cultural being transformed by the journey, cultural identity paramount

Person as a uniquely defined cultural being having an experience of illness

Diagnosis - Life crisis

Prognosis – how long?

What, when, where, how?

Living with uncertainty

Grasping for straws – treatment pathways

DIAGNOSIS

Decision making

Alternate pathways

Path one – complimentary therapies only

Path two – ambivalent treatment

Path three – embracing treatment

INFORMATION

GATHERING

Path one – transformation, acceptance, living with illness, preparation for death, choosing place to die

Path two – transformation of identity, oscillating between fighting and acceptance of diagnosis,

ambivalent about treatment while managing side effects, foot in both camps

Path three – transformation of identity, enculturation to medical system, managing treatment and side effects, actively pursuing every treatment lead.

EFFECTS OF CHOICE

Path one – numerous health crises and palliative intervention

Path two - numerous health crises and palliative intervention alongside further investigation of

treatment options

Path three - numerous health crises and palliative intervention alongside aggressive investigation

and engagement in treatment

MERGING OF PATHWAYS

Major Health CrisisLate stage cancer – diagnosing dying

Emergency department visits

Hospice admissions

Hospital admissions

Going home to die

Dying in hospital

Dying in hospice

ALL ROADS LEAD TO THE SAME

DESTINATION

Symptom control

Pain management

Palliative care

Comfort care

Hospice

DECLINE OF MEDICAL

INTERVENTION

Place of death

Readiness for death

Conversations

Unfinished business

Saying goodbye

Acceptance

PREPAREDNESS FOR DEATH

Person as a uniquely defined human being

Transformed by the journey

Cultural context of death

The whanau gathers

Entering the timeless twilight zone

The end of life

THE END OF THE STORY?

Message to GP’s Listen to people no matter how old they are, you could make a huge difference

Message for carers – you have rights too

Message to families – don’t wait until the last minute

THE LESSONS LEFT BEHIND

Learn to talk about death with the dying

Learn to recognise and diagnose dying

Listen to the person who is dying, and their family

Talk to people about where they want to be at the end of life

Don’t presume you know what someone will need from you – ask

Make room for people to die with their family and loved ones

If people are going to die at home then we need much more support than what is currently offered

MESSAGE TO HEALTH PROVIDERS