1. 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!

2. 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 WHEREThree years in the field. The place where participants are. ETHNOGRAPHY

3. WHYYou 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 BUTYou will never truly know or understand the journey until it becomes your journey. But you can show up! WHY ETHNOGRAPHY?

4. 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

5. 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 Complimentary 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

6. 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

7. Decision making Alternate pathways Path one – complimentary therapies only Path two – ambivalent treatment Path three – embracing treatment INFORMATION GATHERING

8. 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

9. 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

10. Major Health Crisis Late 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

11. Symptom control Pain management Palliative care Comfort care Hospice DECLINE OF MEDICAL INTERVENTION

12. Place of death Readiness for death Conversations Unfinished business Saying goodbye Acceptance PREPAREDNESS FOR DEATH

13. 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?

14. 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

15. 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