Whānau and

personalising end-

of-life care:

Translating research

for practice

Hospice New Zealand Conference, Wellington, 29/10/2014

Lesley Batten, Maureen Holdaway, Marian Bland, Jean Clark, Simon Allan, Bridget Marshall, Delwyn Te Oka, Clare Randall Te

Wakahuia Manawatu Trust 

Project aims

Over three years to:

A. Investigate if / how the addition of ‘cultural goals’ of care in the Liverpool Care Pathway for the Dying Patient (LCP) guides the delivery of culturally appropriate end-of-life (EOL) care for adult Māori within the MDHB region

B. Explore the experiences and perspectives of EOL care of whānau whose relatives have received care guided by the LCP since the inclusion of the ‘cultural goals’

C. In partnership with Māori communities, stakeholders, and providers, develop and pilot a culturally appropriate New Zealand version of the LCP EOL pathway

Research overview

• Retrospective chart review

• Stakeholder interviews

• Whānau interviews

Phase 1Stock take of the LCP

cultural goals of

care

• Hui with Māori communities and service providers

Phase 2Envisioning culturally

appropriate end-of-life care for Māori

• Use translational research approaches, hui, focus & working groups to transform phase 1 & 2 findings into a revised, piloted LCP

Phase 3 Transforming the LCP into

a tool to facilitate culturally

appropriate end-of-life care for Māori

Key findings – phase 1

Not asked, protocols not used?

‘White’

‘E’

‘NZ’

N. LCPs audited

100 258

No ethnicity

39% 43%(60% hospital; 22% hospice; 43% ARC; 30% home)

Few LCPs for Māori

2% 3.5%

65+ years 84% 79%

Self-reported by patients or their next of kin?

Cultural needs documentation

Ongoing assessmentGoal r: The patient’s cultural needs are met

(recorded, referred to, reviewed as necessary & respected)Goal s: The relative(s) or carer(s) cultural needs are met

(recorded, referred to, reviewed as necessary & respected)

Duration of LCP use

Missin

g0-

1 2 3 4 5 6 7>7

Disco

ntin

ued

0

5

10

15

20

25

30

35

40

45

50

% charts,n=258

43.4

19.5

17.7

19.5

0 - 6 hrs6 - 12 hrs12 - 18 hrs18 - 24 hrs

44% of LCPs used for <24 hours43% of those LCPs used for 0-6hrs

LCP duration of 0-24 hours (n=113 LCPs)

What was documented

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED,

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED,

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED,

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED,

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED,

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED

ACHIEVED, ACHIEVED, ACHIEVED, Variance, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED

ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED, ACHIEVED

ACHIEVED (Variance = 1% of 1360 responses)

NO, NO, YES, YES, NO, YES, YES, YES, YES, YES, YES, YES, YES, NO, YES, YES, YES, NO, YES, YES, YES, YES. NO, YES, YES, YES, YES, YES, YES, YES, YES, NO, YES, YES, NO, YES, YES, YES, YES, YES,

YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, NO, YES, YES, YES, YES, NO, YES. NO, YES, YES, YES, NO, YES, NO, YES, YES, YES, YES, YES, YES, YES, YES, YES, YES, NO, YES, YES, YES, NO, YES, NO, YES, YES, NO, NO, NO,

NO (But in Version 11 documents ‘no’ elicited 20% of 122 responses)

‘nil identified’, ‘nil identified’ Minimal variance documentation

Relatives’ goals achieved even when not present

Confidence, competence

Looking at the cultural goals and the audits, I do find it really interesting that not much is often written there. And I even see ‘no’, you know, “what are your cultural needs?” “None”. And I find that really interesting.

Interviewer: Why do you think that is?

I just wonder whether the person who’s doing the [cultural needs] assessment doesn't have the confidence to actually ask probing questions to pull it out of the person. (Int. 4)

Blocks to cultural care

Image: With permission – KB Trout Productions

Phase 2: Key findings

Whānau

centred

Communication &

relationships

Integrated, seamless, navigated services

Organisational commitment

Whānau roles

The whānau were being advised and supported from here and from our [rural] local GPs, from our [rural] hospital. They were well in control, they were able to plan, they were able to watch that, with this whānau and their loved one that the tikanga and the wairua was maintained and intact and that the mana of their loved one, and for all of them as a whānau too, was being appropriately attended to and maintained. (FG. 6)

Monitor knowledge

use

Evaluate outcomes

Sustain knowledge

use

Identify problem

• Identify, review and select knowledge

Adapt knowledge

to local context

Assess barriers to knowledge

use

Select, tailor, and

implement interventions

Knowledge inquiry

Synthesis

Tools /products

Knowledge Creation

Tailoring

knowledge

Action cycle (application)

Knowledge to Action Process (Graham et al., 2006, p.19)

Objectives developed from phases 1 & 2 – clinical services

The importance of the cultural component of personalised care is recognised

Personalised goals of care are assessed

Appropriate responses to assessed personalised goals are actioned (and evaluated)

The person receiving are feels safe

The family or whānau feel safe

The clinical staff providing care feel safe in the provision of that care

Personalising care

Conversation starter

ARC toolkit

Pilot 1

Undergraduate nurses’ workshop

Pilot 2

Revised LCP

Pilot 3

ARC toolkit

Ongoing quality

activities

Staff education

programme

Improving personalised care at end-of-life

Resident record audits

Staff feedback

“An eye opening to ways of discussing end-of-life care”

“Exposing parts of my practice I had become complacent in. Learning the perspective of others and that I’m not always right!”

Workshop for undergraduate nurses

LCP revisions piloted

Standardised ethnicity documentation

Family and whānau involvement in care

Whānau spokesperson

Personalised care needs

Cultural and spiritual advisors

Combined spiritual and cultural care goals – personalising care

Images

⨷ Variance reporting style

Ma te rongo, ka mohio

Ma te mohio, ka marama

Ma te marama, ka matau

Ma te matau, ka ora

Through listening comes awareness, through awareness comes understanding, through understanding, comes knowledge, through knowledge comes life and wellbeing

Further information

Contact Lesley Batten

Email: L.Batten@massey.ac.nz