Culturally Appropriate End-of-Life Care for Māori Central Regional Palliative Care Education Forum, July 2012 Lesley Batten & Maureen Holdaway

Research partners Research Centre for Māori Health & Development, Massey University National LCP Office Arohanui Hospice Te Wakahuia Manawatu Trust History to this project Liverpool Care Pathway for the Dying Patient (LCP) Cultural goals

Research project aims Over 3 years to: A. Investigate if / how the ‘cultural goals’ in the LCP guide the delivery of culturally appropriate end-of-life care for adult Māori within the MidCentral DHB region B. Explore the experiences and perspectives of end-of-life 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 pathway

Research overview Retrospective chart review ✔ Stakeholder interviews ✔ Whānau interviews (underway) Phase 1 Stock take of the LCP cultural goals Hui with Māori communities and service providers (underway) Phase 2 Envisioning culturally appropriate end-of-life care for Māori Using translational research approaches, hui, focus and working groups, the findings from phases 1 & 2 will be transformed into a revised, piloted LCP Phase 3 (2013) Transforming the LCP into a tool to facilitate culturally appropriate end-of-life care for Māori

Chart audit 100 LCPs (25 each from hospice, home care, aged residential care, and hospital) Audited if and how the following were documented: Ethnicity Cultural assessment Cultural care Demographic details - age, sex, diagnoses, care location at LCP commencement and conclusion

Selected findings 39% of LCPs had no ethnicity recorded (60% hospital; 24% hospice; 56% ARC; Home care 16%) 2% of charts for Māori or Pacific Peoples Minimal variation between LCP ethnicity and NHI Minimal cultural needs documentation Very few variances recorded (1% of 1360 responses, but in V11 documents ‘no’ elicited 20% of 122 responses) Minimal variance documentation

Incidental findings Incomplete, inconsistent documents Selection of ‘Achieved’ when relatives absent 84% of LCPs used for 65+ year olds Even split between malignant/non-malignant diagnoses, but differences across sites Hospital & ARC non-malignant Hospice & home care malignant diagnoses

Stakeholder interviews Forty interviewed or participated in hui, 50% Māori Extended throughout the North Island Clinical, cultural support, policy roles Focused on investigating: The developmental history of the cultural goals How the goals influence culturally appropriate care for Māori The goals’ utility, comprehensiveness and cultural appropriateness for Māori

Selected findings Development of the cultural goals Organic process – local to national adoption Consensus that ‘culture’ needed to be overt Challenge of maintaining LCP integrity Some consultation with Māori Goals and culturally appropriate care for Māori? Goals important for all cultural groups, useful as ‘prompts’ Multiple challenges external the goals Significant organisational structural, cultural, professional barriers Clinical staff with divergent understandings/beliefs about dying What does an assessment of ‘cultural’ needs entail?

Utility, comprehensiveness, cultural appropriateness? Facilitated regional/local Māori consultation Goals reflected extant practices, but making overt Culture sometimes a ‘block’, cultural goals as ‘more difficult’ Concerns about variance/minimalist reporting Other barriers external to the cultural goals Fern frond / ponga picture Title

Early recommendations Building on regional/local best practices for clinical education and support Standardised ethnicity question Translated resources Clearer guidelines to organisations changing the LCP Prompts, resources, mentorship regarding cultural needs assessment and culturally appropriate care Reconsideration of variance reporting for cultural goals

Next steps Revised phase 1c underway Related to the findings from phase 1a (chart audit) – all LCP records for 2011 being audited for ethnicity recording across the same 4 sites

Phase 2 underway Modified phase 1c (whānau interviews) Hui with Maori communities, service providers MDHB, Wairarapa, and Whanganui Connection with other projects throughout New Zealand e.g. Māori health literacy Advanced care planning

Access to findings All technical reports completed to date and feedback pamphlets available on the National LCP Office website: For further information contact: Maureen Holdaway ext Or Lesley Batten ext