A2 - Communication
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Whanau and personalising end-of-life care: Translating research for practice Lesley Batten, Maureen Holdaway, Marian Bland, Jean Clark, Simon Allan, Bridget Marshall, Delwyn Te Oka, Clare Randall
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A2 - Communication
- 1. WhÄnau 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
- 2. Project aims Over three years to: ï§ A. Investigate if / how the addition of âcultural goalsâ 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 MÄori within the MDHB region ï§ B. Explore the experiences and perspectives of EOL care of whÄnau whose relatives have received care guided by the LCP since the inclusion of the âcultural goalsâ ï§ C. In partnership with MÄori communities, stakeholders, and providers, develop and pilot a culturally appropriate New Zealand version of the LCP EOL pathway
- 3. Research overview âą Retrospective chart review âą Stakeholder interviews âą WhÄnau interviews Phase 1 Stock take of the LCP cultural goals of care âą Hui with MÄori communities and service providers Phase 2 Envisioning culturally appropriate end-of-life care for MÄori âą 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 MÄori
- 4. Key findings â phase 1
- 5. Not asked, protocols not used? âWhiteâ âEâ âNZâ N. LCPs audited 100 258 No ethnicity 39% 43% (60% hospital; 22% hospice; 43% ARC; 30% home) Few LCPs for MÄori 2% 3.5% 65+ years 84% 79% Self-reported by patients or their next of kin?
- 6. Cultural needs documentation Ongoing assessment Goal r: The patientâs 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)
- 7. Duration of LCP use 50 45 40 35 30 25 20 15 10 5 0 % charts, n=258 LCP duration of 0-24 hours (n=113 LCPs) 43.4 19.5 17.7 19.5 0 - 6 hrs 6 - 12 hrs 12 - 18 hrs 18 - 24 hrs 44% of LCPs used for <24 hours 43% of those LCPs used for 0-6hrs
- 9. 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 ânoâ, you know, âwhat are your cultural needs?â âNoneâ. And I find that really interesting. Interviewer: Why do you think that is? I just wonder whether the person whoâs doing the [cultural needs] assessment doesn't have the confidence to actually ask probing questions to pull it out of the person. (Int. 4)
- 10. Blocks to cultural care
- 11. Image: With permission â KB Trout Productions
- 12. Phase 2: Key findings
- 13. WhÄnau roles The whÄnau 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 whÄnau 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 whÄnau too, was being appropriately attended to and maintained. (FG. 6)
- 14. Knowledge to Action Process (Graham et al., 2006, p.19) Monitor knowledge use Evaluate outcomes Sustain knowledge use Knowledge Creation Identify problem âą Identify, review and select knowledge Select, tailor, and implement interventions Assess barriers to knowledge Adapt use knowledge to local context Knowledge inquiry Synthesis Tools /products Action cycle (application)
- 15. Objectives developed from phases 1 & 2 â clinical services ï§ The importance of the cultural component of personalised care is recognised ï§ Personalised goals of care are assessed ï§ Appropriate responses to assessed personalised goals are actioned (and evaluated) ï§ The person receiving are feels safe ï§ The family or whÄnau feel safe ï§ The clinical staff providing care feel safe in the provision of that care
- 18. Pilot 1 ARC toolkit Pilot 2 Undergraduate nursesâ workshop Pilot 3 Revised LCP
- 19. ARC toolkit Ongoing quality activities Staff education programme Improving personalised care at end-of- life Resident record audits
- 20. Staff feedback ï§ âAn eye opening to ways of discussing end-of- life careâ ï§ âExposing parts of my practice I had become complacent in. Learning the perspective of others and that Iâm not always right!â
- 21. Workshop for undergraduate nurses
- 22. LCP revisions piloted ïŒStandardised ethnicity documentation ïŒFamily and whÄnau involvement in care ïŒWhÄnau spokesperson ïŒPersonalised care needs ïŒCultural and spiritual advisors ïŒCombined spiritual and cultural care goals â personalising care ïŒImages âš· Variance reporting style
- 23. Ma te rongo, ka mohio Ma te mohio, ka marama Ma te marama, ka matau Ma te matau, ka ora ï§ Through listening comes awareness, through awareness comes understanding, through understanding, comes knowledge, through knowledge comes life and wellbeing
- 24. Further information ï§ Contact Lesley Batten ï§ Email: L.Batten@massey.ac.nz
Hinweis der Redaktion
- Research partners â Culturally appropriate end-of-life care for MÄori Research Centre for MÄori Health & Development, Massey University Former National LCP Office Arohanui Hospice Te Wakahuia Manawatu Trust Funded by the Health Research Council of New Zealand and the Ministry of Health
- Muliphase Mixed method
- Interested in ethnicity documentation as one marker of cultural identity No guidance in the data dictionary
- Ethnicity documentation is important for: 1. Data collection/service use evaluation; 2. link to identities, cultural, social; 3. should be option for multiple identities â standard MOH protocols and ethnicity documentation; A separate data-match between the ethnicity recorded in the LCP and that recorded under the NHI showed that the majority of the missing ethnicities were NZE. NHI should be used for research purposes
- We did record details of duration of LCP use What we identified was an issue for meeting the cultural needs of patient and family when questions about cultural needs may be asked within the last few hours of life. Although it is never too late to ask these questions, the hope is that the conversations have also been had before. Stakeholders of course identified that the work at this time should be building on all the other âcultural careâ that had been ongoing, rather than a sudden attempt to meet all needs
- Questions to stakeholders in in-depth interviews included: issues in palliative care generally, use of the LCP, and cultural goals specifically. In addition, clinician stakeholders told us about the importance of not assuming needs, based on perceived or reported ethnicity or religion Challenges with narrow definitions of culture Different levels of understanding as to how beliefs and values do differ â so the old adage of âdo unto others as you would have others do unto youâ is potentially problematic Importance of clinicians recognizing how their own beliefs and values impact on the care they provide
- In phase 1, core challenges with the cultural goals of care were the word culture and the variance reporting style that inhibited staff from writing more personalised comments about the person You know when I see âcultureâ I sort of feel this little handbrake going on. I think, âOh God, I don't want to go there. âŠIâd get rid of the word culture. I mean that's a scary word, and I talk about ⊠âwhat are your beliefs and valuesâ, I think Iâd look at the focus of âwhat are your beliefs and values about life and perhaps death?â Well, you know most people can ask, answer that. Itâs not scary, but the moment you say âcultureâ, itâs almost like a personal assault. (Int. 10) There were many other challenges identified, some related to the LCP but many related to the challenges of providing palliative care in settings ranging from hospital to home, with some settings much more focused on cure, with increasing numbers of staff with divergent beliefs about death and dying, and in a society that isnât always very good in talking about about death and dying
- However, clinicians also identified how important it was that culture was included in any needs assessment and especially in an end of-life plan Experienced clinicians identified how when they had conversations with people, sometimes a number of conversations over time, that people â patients and whÄnau â were able talk about what was important to them at this time. So it was important as we went forward in the research not to throw the baby out with the bathwater
- Seven hui, Maori health service providers & Maori whÄnau, Urban, rural, from young adults to kaumÄtua Hui were about what culturally appropriate end of life care would look like for MÄori (not specifically about the LCP or cultural goals) Much of the discussion was not about services, but about experiences of whÄnau dying (some recent experiences and others some time ago). While there were examples given of poor communication, poor care planning, and barriers, there were also positive examples of whÄnau being able to care in the ways that they wanted, and of health services (including hospitals which are usually the ones maligned, making things happen in timely and appropriate ways). MÄori researchers on our team talked with whÄnau and MÄori health providers about how they envisioned culturally appropriate end-of-life care, in any care setting whether that be in hospital, in hospice, in aged residential care, or at home. Those participants talked about how culturally appropriate care was much more than âcultural careâ. it was whÄnau-centred, with whÄnau defining who was whÄnau, and where whÄnau were actively involved in decision-making and supported in their care-giving roles; Palliative care services were integrated, seamless and coordinated, with supportive navigation between and within services; Communication was core to building relationships and sharing knowledge. It was respectful, empathetic, and delivered in ways that whÄnau could understand and engage with; Organisations had a responsibility to demonstrate in tangible ways their commitment to delivering services that met diverse needs through structures, policies, procedures, and service design, enabling whÄnau to undertake their cultural practices in a safe way Clear overlaps between issues that stakeholders â mostly nurses â identified and what MÄori whÄnau and health service providers identified as issues and challenges. Some obvious misunderstandings about what the LCP is and what it is used for
- When services are in place then whÄnau can undertake their caring roles wherever that care may be needed and in ways that are important to them
- Strategies were developed to meet these objectives included: health professional education related to personalised care Development of a prompt, conversation starter tool Standardised ethnicity documentation Audit tools And a framework for holistic assessment of cultural, spiritual, religious and social needs of the individual and their family or whÄnau within the concept of personalising care Talk about some of these
- Health professionals asked us to provide them with guidance. We resisted the requests for lists of cultural practices and tikanga â if appropriate those can be provided at organizational level when the organization has a relationship with iwi, or they can be used in structured and facilitated education. However, even then, they need to be used with care as it is too easy to make assumptions about what a whÄnau may need rather than to have the conversations to enable them to share what really is important to them. Instead we developed a small credit card sized prompt. On one side are some hints about how talk about personalising care
- On the other side is a reminder of the need for a holistic assessment, with Te Whare Tapa Wha and three potential conversation starter question. Over 350 of these cards are currently in use in our region and these have formed part of the other translational work that we have done
- A toolkit of activities for organisations to implement independently Providing educational opportunities for staff to promote understanding of the importance of personalising care; increasing confidence and competence in assessing cultural goals and developing appropriate response to meet those goals For organisations to begin the process of identifying organizational barriers to the provision of culturally appropriate care To support organizations to plan continuous improvement activities related to residentâs personalised care needs
- The toolkit was piloted in one large ARC facility. Ten staff completed the educational component (RNs and one EN) Not all parts of the toolkit were used on this occasion due to changing circumstances within the organisation Staff valued the time to come together and talk about their practice â as an in-house activity Staff found it a real eye opener being involved in simple audit activities of care plans for features of personalised care â it raised many issues of consistency, quality, staff orientation and ongoing professional development Congruent with other programmes such as the fundamentals of palliative care
- Aim to stimulate reflection on the approaches, processes and skills necessary to complete a culturally appropriate palliative care needs assessment for patients, their families and their whÄnau Delivered to over 100 3rd year nursing students in 2 institutions Students commented that they appreciated the practical tips about communication that the workshop built on their knowledge of cultural safety and palliative care. They also gained a different understanding of what clinical research can look like when there is a translational phase that grounds the findings Lecturers provided interesting comments including that they were unaware of any place within their curriculum where whÄnau decision-making or whÄnau centred care was explained to students - and another commented that the high level of focus on cultural safety in nursing practice had not necessarily widened nursesâ understandings of the fundamental differences between groups in the cultural expressions and needs related to living and dying
- Small pilot in hospital environment Staff raised the issue of a lack of time to care and structural constrains Little in the way of improvements in documentation This pilot did raise again the additional challenges of: Individual staff having infrequent involvement in EOL care in acute care environments Patients shifting between services in a short timeframe Improvements in ethnicity documentation were noted More staff wanted the prompt card!
- Our findings from all phases were focused on culturally appropriate care for MÄori, however they are relevant for the care of anyone of any ethnic or cultural group. There are limitations in our study. We were unable, as planned, to interview MÄori whÄnau whose relatives had received care guided by an LCP â the numbers were too low. However as any pathway has more significance for clinicians than for patients or family, whose focus is rightly on their own experiences, then this was not a major limitation. In addition, our study was based within the MDHB region, but individual whÄnau and health providers had experiences throughout the country and abroad. We are very grateful for our participants who shared their precious stories, and their lives, and their clinical practice and their professional aspirations with us. We are also really grateful for the organizations that let us pilot projects within their organizations â we all learnt in the process In conclusion I share with you a whakatauki that we believe signifies the journey through our research Go well