Supportive Care Model

Transcription

1 1 Supportive Care Framework Project Supportive Care Model Literature Review Summary Introduction CCN has undertaken a literature review to inform the development of a supportive care model of care in NZ see Appendix A for methodology information. This summary document has been developed to support decision making for this workshop with respect to what needs to be described in the model of care and how we want it to look for NZ. This document provides information on models in place nationally and internationally. Some of the models that were reviewed also included associated care pathways or programme logic type descriptions to support their implementation and this information has also been included. See Appendix B for web links to model and standards documents reviewed. What is a Model? A model is a visual representation of factors required to provide effective care. Models provide the hooks to hang on the components needed to deliver and measure this care. It supports a system to maintain a common focus and sense of united direction at all levels. Why do we need a Model? The Supportive Care National Implementation Plan [HOI, 2011] recommended the development of a model of psychosocial support which would inform standards around aspects such as service delivery, cultural service provision, screening, assessment, referral, documentation and minimum training requirements. It recommended development of the model but no indication was given about the how. This project is proposing a broader approach to the development of a model to encompass all aspects of supportive care, including patients practical barriers to accessing psychosocial support, information support and spiritual support and ensure appropriate referrals to care coordinators and/or social workers. The starting place we have identified is what do Māori models of health tell us we need to consider, what can we learn from the international context and is this applicable. What does the literature on Supportive Care Models tell us? The following general observations on the development, structure and implementation of models have been generated from the review of the literature. There are main models of generic health care which have formed a basis for models of supportive care delivery and as such many of the models looked at have similarities. Within each of the models internationally outlined below there is a historical flow between them and they have learnt from each other.

2 2 The NICE guidance is a foundation document for many other supportive care programmes internationally. This review focuses on those models which have been tested in some way and which have been derived from well developed theories and practice. There is no clearly defined or widely implemented supportive care model currently in NZ. There are however different aspects which have been well developed. For example the work undertaken by the Northern Network around Care Coordination, work in MidCentral around the Iwi/Cancer Navigators provision of care and more recently the work of John Waldon around a Model of Care for the Massey Psychology Service which encourages engagement by Māori. The international literature shows that each group has approached this development work with a different motivation for what they hoped to achieve. The development of overseas models has been driven by multiple factors including: Standardisation requirements for accreditation Increase in Survivorship The increase in screening programmes for distress A societal shift in the acceptance of the need for emotional support while undertaking treatment - cancer is now talked about as so there is now a move to talk about its impact. Advocacy by Health Professionals and Champions including cancer consumers and organisations who support people affected by cancer. What the international literature has told us is: There is a need to develop explicit models of care to support supportive care activity and integrate it into the mainstream services. This work is needed to both improve and enhance the valuable work being undertaken by the current workforce. From both a system and practitioner focus there is a need to focus on person centered care and turn the concept into a reality. Many services are fragmented by service configuration and gaps in service and a sense that this leads to an inconsistency in support for the person and their family as they move through. That this inconsistency also impacts on the workforce and leads to frustration, duplication of effort and poor use of resources. A lack of measurable outcome which means that the area of supportive care largely remains unvalidated and as such under-resourced. The language use d, including the use of different terms, have been identified at times as confusing the picture [Canadian Association of Psychosocial Oncology 2010] Older models make reference to multidisciplinary teams; newer models use inter professional/disciplinary. While there are nuances between these words they are philosophically aligned. Wording is at times different across countries but the concepts often behind match. Examples included; Person / patient centered whilst this project has identified the preferred description of

3 3 person centred it is accepted for the purpose of this exercise that those using patient centered are often coming from a similar philosophical basis. (Health Foundation 2014) Many of the models that talk about the patient/person needs have identified the importance of the family and the needs of both the caregivers, and those important to the person such as children and partners. For example in the background on one of the American models, when they talk about the patient provider relationship, they acknowledge this in practice means taha whanau. Within the international and national literature it is well accepted that people undertaking treatment for cancer experience levels of distress. It is a well researched point that the level of need and distress experienced by people and their families varies dependent on a variety of factors and at different times of their treatment. It appears to be internationally recognized that the tiered triangle representation of need is consistently found in all areas and across all types of cancer. Guidance for Improving Supportive Care for Adults with Cancer in NZ (MOH 2010) Each type of cancer will bring a different impact to each person and their family/whanau but common themes and areas where assistance is needed have been identified as universal. The models we have identified have all acknowledged this at their beginning as such there is little value for our purpose in covering this in detail. There is a shift in the need for models of care which assist in the survivorship phase. When the care pathway diverges at the point when Palliative Care is required or Survivorship care, the concepts behind both these areas are understandably different. This often has meant in the modelling context that additional work has been done to develop a separate model of care and they are a common addition within the literature, which will provide additional guidance for NZ when these aspects are looked at more closely. Another challenge that exists is comparing approaches taken with model development Some groups have developed models describing what needs to happen and then pathways to support implementation; others have only developed pathways or have based their work around workforce competencies. Examples of all these approaches have been provided to give an idea of how this work fits together. Additional Discussion Points Planning for the supportive care workforce is piecemeal in nature and leads to a workforce who is trying to catch up rather than meet a planned need (this perspective comes from attending the AOSW 2013/OSWA 2014 conferences). As the shape and volume in cancer care change, with more people living longer with the disease, those services required to meet this increase in demand for supportive care will need to grow in a planned way. In the NZ and international context the way Allied Health is funded, often from a different healthcare stream, contributes to supportive care being seen as additional as opposed to integral to the cancer pathway.

4 4 A concern when looking at the chronic health modelling as a survivorship model is around the assumptions that sit behind it. The concepts of self management, patient choice all have validity and align with the goal of Whānau Ora in regards to whānau self management. However one of the unspoken assumptions that appears apparent in the Wagner model is that you are responsible for causing your current health dilemma. This could easily become very difficult for cancer patients. If the assumption that you need to be up skilled in managing your own health the flipside message is you haven t been doing it up to this point and have contributed to your current condition. The negative messaging that could become apparent in staff less skilled in the nuances of the model is a factor that would need to be taken into account around the utilisation of this type of modelling. It would be erroneous to adopt this model without consideration of this impact albeit while many of the elements of the model are beneficial. With these issues in mind the benefit of modelling is to provide a sense of common understanding and basis from which pathways for care in a very specific context can follow. So the two are not mutually exclusive but without a shared understanding at the beginning, the structural, organisational and cultural changes required to deliver quality collaborative care will struggle to occur. Within all varieties of model of care and service delivery, whether specific aspects or broad frame works, the same aspects of supportive care were repeated, and the same question remained how we can best deliver a responsive coherent model of care for people and their family/whānau while they are experiencing the impact of their cancer and beyond. So how do we do this? The vision for this project is People with cancer and their carers experience an integrated and coordinated system of continued supportive care, overseen by an educated workforce, to ease the social consequences arising from their experience with cancer and to enhance their quality of life. The decision making for this workshop is what needs to be described in the model of care and how do we want it to look. As you review the information in this summary document please consider the following questions: What elements do you as the experts in your field see as relevant and appealing What do you like/dislike about these models Do you think they could improve supportive care/do they align with your current way of working Do they provide a common basis for work going forward How do we ensure Māori models of care are incorporated in order to achieve positive outcomes for Māori and their whānau experiencing cancer?

5 5 1. NZ Context Supportive Care Models Overview From the review of the literature and discussions with a range of key stakeholders it is identified that there is no universal supportive care model currently in NZ. There are however initiatives that have been undertaken in different regions by different organisations which have sought to improve aspects of supportive care, including: Northern Cancer Network undertook a co-design process to develop a care coordination model which they have commenced implementing via a number of projects. This was seen as way of providing an opportunity for services to align their care, where possible or feasible, to the areas which patients and whānau deem to be priority. Midland Cancer Network adopted the Victorian supportive care policy to influence their work which allows work to be directed to the needs of the local community. Tui Tuia Nga Tangata - A Model for Improving Access to Psycho Oncology Care by John Waldon, which gives guidance and understanding to increase Māori engagement with that aspect of supportive care. National models of care, including the Gynaeoncology model and the Medical Oncology Model of Care (MOMOC) have sought to integrate aspects of supportive care, in particular care coordination. Cancer nurse coordinators (CNC) have been looking at processes and barriers to access and this has resulted in developments around screening and supportive care pathway development. Service specifications for positions such as Adolescent Young Adult (AYA) workers acknowledge more fully this aspect of care. Other health sector work which may help to inform a cancer supportive care model include the long term conditions framework where organisations at all levels are being encouraged to implement models of care to improve outcomes for those with chronic health needs. See appendix C for summaries of additional relevant model work. General observations on these activities include: Within these separate initiatives there are many of the same elements found in the international models. There is an overall wish and dedication by health workers to provide supportive care. Health workers who are working well together to provide supportive care services do so often from an individual relationship base versus a firm systems/process base. The CNC initiative has focussed work around care coordination to improve how the system supports the patient journey. Distress screening has been implemented in pockets but as yet there is no overall agreed approach with respect to the tool or process. Issues such as separate funding streams and differing priorities are apparent with respect to supportive care development, including work force.

6 6 Discussion Points The impact of different funding streams and development priorities can mean that the health workforce delivering supportive care services are torn between the work they want to do and the work they are asked to do. Initiatives are often driven from individual interests rather than needs analysis. There have been implementations of positions such as the AYA Workforce which have looked at a group with specific needs. One of the challenges with this is that the system infrastructure around supportive care is not robust, making the incorporation of these isolated roles more difficult. In overall cancer service modelling, supportive care is variably present, and if it is present, its often as generic statements with very little guidance on implementation. For example the 2011 Cranleigh report to the MoH re New Models of Care for Medical Oncology doesn t contain any reference to supportive care and, other than brief sentence re other staff, makes no inclusion of supportive care professionals (this is despite reviewing international models of supportive care). Supportive care often remains as an afterthought or add-on versus being integral to service planning. This can contribute to general confusion about the role of any health worker in supportive care. All tertiary staff spoken to during this process expressed having good relationships with their NGO colleagues however again this tends to be individual based versus system based this means that a change in staff on either sides can mean disconnects occur. As far as could be established, formal agreements are not common between DHBs and NGOs. This can result in misunderstandings, gate keepings and so called turf battles. While there has been limited modelling activity undertaken, work has been done on pathways, screening, and triaging by a workforce which is doing innovative and very effective work. The establishment of Iwi Navigators both in cancer and other areas of health is a positive example of an aspect of a model which exists in the NZ context. The NZ space around supportive care appears to be one which functions on the input of the professionals working in it who remained focused on the needs of their patient and family/whānau. This gives us the capacity to look at developing a model of care that is inherently bicultural and uniquely NZ while utilising the work done overseas. The project objectives include ensuring Māori health and Pacific health concepts inform the outputs to ensure this work contribute to achieving Māori Health gains and the needs of many of our other populations that experience inequity. As such it is important that we ensure we begin with our Māori Health understandings and models from a wider health context.

7 7 Māori Models of Care Overview: A brief was given to provide a summary of Māori models of care to be considered in developing a cancer supportive care framework for use in New Zealand. This would ensure a shared understanding amongst all participants at the proposed workshops to be held in November. This overview would sit alongside an international literature review. It must be noted that such a summary will only provide a surface understanding and in depth knowledge can only be obtained with further discussion around how these models can be meaningful operationalised for Māori within a cancer setting and integrated fully within a framework. There are three major themes that can be derived from looking at Māori models of care either from a policy level and/ or a practice level: 1. A Māori perspective of well-being is holistic. 2. A focus on whānau and/or whanaungatanga (relationships) is paramount 3. Each taha, domain, outcome or strategy is interconnected and interdependent. These three themes need to be considered carefully in order to develop a supportive care model that honours Māori perspectives, Pacifica considerations and a uniquely New Zealand approach These themes can be found in a variety of Māori models of health and frameworks. For the purposes of this overview, the following frameworks are presented: Whānau Ora (Taskforce on Whānau Centred Initiatives (TOWCI), 2010), Te Pae Mahutonga (Durie, 1999) and Te Whare Tapa Whā (Durie, 1985). Readers are also encouraged to review the Equality of Health Care for Māori- A framework (Ministry of Health, 2014) which focuses on championing leadership, knowledge and commitment within health to ensure equity of positive health outcomes for Māori. Whānau Ora- the wellbeing of whānau He Korowai Oranga, the Māori Health Strategy (Ministry of Health, 2002) heralded a new direction in Māori health policy with a focus on whānau ora (Boulton, Tamehana & Brannelly, 2013) and a shift from an individualistic approach in health care to a whānau approach. Whānau Ora is an inclusive approach to providing services and opportunities to all families in need across New Zealand. It empowers whānau as a whole rather than focusing separately on whānau members and their problems and requires multiple government agencies to work together with families rather than separately with individual relatives. 1 Whānau Ora is about transformation of whānau with whānau who set their own direction. It is driven by a focus on six whānau outcomes identified by the Taskforce on Whānau Centred Initiatives: 1. that whānau will be self-managing; 2. living healthy lifestyles; 1 Whānau Ora Fact Sheet, May 2013, Te Puni Kokiri

8 8 3. participating fully in society; 4. confidently participating in te ao Māori (the Māori world); 5. economically secure and successfully involved in wealth creation; 6. and are cohesive, resilient and nurturing (Te Puni Kokiri, 2013). Whānau Ora is regarded not only as a philosophy, but informs models of practise, an outcome goal, and a mechanism for funding providers and a foundation for future generations (TOWCI, 2010). The major emphasis was in relation to wider sector involvement and the development of skilled Whānau Ora practitioners able to assist whānau in achieving their potential. The concept of Whānau Ora is now widely used when referring to Māori health and improved outcomes for Māori and those associated with whānau. It is a holistic way of supporting whānau towards transformational change to self-manage and take responsibility for their economic, social and cultural development. Whānau Ora reinstates the collective capacity of whānau to problem solve, nurture each other and realise aspirations in a way that builds on the strengths and leadership in whānau (Levy, 2013) and when required, to consider the barriers they may face from the perspective of whānau. Te Pae Mahutonga A Māori health promotion model Te Pae Māhutonga is the Māori name for the Southern Cross Star Constellation. Durie (1999) used this cluster of stars to formulate an indigenous health promotion model. Durie likens Te Pae Māhutonga to a symbolic map for bringing together the significant components of Māori health promotion (Durie, 1999). Te Pae Mahutonga depicts six key tasks for Māori mental health promotion and encompasses Māori worldviews (Turner, 2006). It along with Te Whare Tapa Whā, are models that have been widely used by Māori and non-māori to inform culturally appropriate health care in New Zealand (Kara, Gibbons, Kidd, Blundell, Turner & Johnstone, 2011: 103). The constellation has four central stars arranged in the form of a cross. These four stars are used to identify four key tasks and are named by Durie to reflect particular goals of health promotion: Mauriora (access to te ao Māori, cultural identity), Waiora (environmental protection and the physical environment), Toiora (healthy lifestyles) and Te Oranga (participation in society). In addition there are two stars arranged in a straight line which point towards the cross. They are known as the two pointers and in relation to this model are called Ngā Manukura (leadership) and Te Mana Whakahaere (autonomy). The main task of Te Pae Māhutonga is to facilitate the right to development through leadership and autonomy. The right to development is a right that belongs to individuals, to whānau, to Māori as a people and to all New Zealanders. It should be denied no one (Durie, 2003, cited in Turner, 2006:21). Te Whare Tapa Wha: A Māori model of health There are a variety of Māori models related to health and wellbeing, including Te Wheke (Pere, 1991), Nga Pou Mana (Henare, 1988), The Gallery of Life (Te Roopu Awhina o Tokonui, 1988). Te Whare Tapa Whā was first presented at a Māori Women s Welfare League hui in In 1985, Mason Durie published a paper called A Māori perspective of health, which outlined differences in perspectives towards health by Western society and Māori. Durie presented a traditional perspective of Māori health as being a four sided concept

9 9 representing four basic tenets of life (Durie, 1985, p. 483). The balance and symmetry with each of these tenets were essential for wellbeing. The four components of wellbeing are: 1. te taha wairua (spiritual wellbeing/ the capacity for faith and wider communion) 2. te taha hinengaro (mental wellbeing/ the capacity to communicate, think and feel) 3. te taha tinana (physical wellbeing/ the capacity for good physical health and a healthy environment) and 4. te taha whānau (family wellbeing/ the capacity to belong, to care and share). A literature review found that Te Whare Tapa Wha (Durie, 1985) was being used as a framework for services in a range of sectors including policy, health, mental health, public health, education, justice and Kaupapa Māori health services (Cherrington and Masters, 2005).The model was also being endorsed as a framework in mental health outcomes with the potential to be used in both generic and Kaupapa Māori mental health services (Kingi & Durie, 2000). When looking at our international models below which come from a different world philosophy it is important to consider their value and utilisation with the knowledge of what aspects of our Māori Models of care tell us are essential to be prioritised within our Model to ensure its development contributes to Māori health gains. Pacific Models of Health It is also important that a model of care that is developed will support the needs of New Zealand s Pacific population. This document does not currently seek to outline these models of health in detail but rather acknowledge that this is an area where further expertise will be sought to further inform the development of the model against an understanding of Pacific people and their health needs. Many of the Pacific Models of Health have their origins in Mental Health which makes them ideally aligned with Supportive Care. Workers in the health and disability sector are aware that, for most Pacific peoples, āiga, kāiga, magafaoa, kōpū tangata, vuvale, fāmili (family) is the centre of the community and way of life. (Ala Mo ui Pathways to Pacific Health and Wellbeing ) Ala Mo ui 2014 also emphasises the importance of utilising the principles of Whānau Ora when supporting Pacific people. Models of understanding Pacific Health from different pacific perspectives bring a commonality of the need to understand health in a holistic manner and the importance of family, culture and spirituality. There is an importance in the understanding of relationships and trust and rapport. Models of care including Fonofale Model (Samoan), Te Vaka Atafaga Model (Tokelauan), Tivaevae Model (Cook Island) and Kakala Model (Tongan) will need to be explored in greater detail to ensure these viewpoints are incorporated into developments.

10 10 2. NHS Improving Supportive and Palliative Care for Adults with Cancer (NICE, 2004) Overview defines service models likely to ensure that patients with cancer, with their families and carers, receive support and care to help them cope with cancer and its treatment at all stages.

11 11 Key aspects to a supportive care service include: Coordination of Care Face to Face Communication Information User Involvement (this context means person centered care) Psychological Support Services Social Support Services Spiritual Services Palliative Care Rehabilitation Complementary services for family including bereavement General comments: Similar to the Australian work, the NHS/NICE work also looks at level of need. It provides key components which sit behind this work and address the aspects needed. It reinforces the need for different approaches to levels of care. This work which is now ten years old appears in nearly all NHS planning for care delivery in this area which is why it has been incorporated here - the work appears still relevant. This work is also referenced also in other international models reviewed. This work addresses both Supportive Care and Palliative Care together linking the two. Social support is separated out in particular due to the funding model in the UK which separates out what we would call Needs Assessment Service Coordination into the Council based Social systems including Social Work. As the need for more formalized approaches to living with cancer have become apparent the NHS have developed a system around Stratified Pathways of Care. This is a model which integrates the previous framework from the original NICE guidelines and develops it further The principles of this model include: Pathway choice is a joint decision between the individual and the clinician Needs Assessment and Care planning Personal care records and summaries Timely access to services information and education

12 12 remote monitoring {more re testing in surveillance phase} care coordination self management It is focused on joint decision making and direction towards self management moving forward. A shift in language and principals is evident in this more recent work where it is more explicit about the need for person centered care. Critical Analysis Equity Focus It is not evident that specific groups have been considered from a equity lens but rather a approach of improvement for all with the realisation of different levels of need due to both cancer related and wider social factors. There is some reference to those from a culturally and linguistically diverse background. The UK context is obviously different from a cultural point of view and how this is captured in documents is usually with reference to meeting the needs of the lower socioeconomic population than a specific cultural population. Within UK hospitals the interpreting services often provide a patient advocacy service and the use of interpreters is highlighted within this work Consumer Input In development it had a consumer panel Interdisciplinary input Implemented Reviewed Project Alignment Development included clinical expert input which included spiritual care and palliative care. There are standards which fall from each aspect as well. The work has been taken and integrated into various separate NHS areas service developments (to try to capture them all would be another document in itself). This work has supported the developments of care pathways, education, inter professional working and overall care of the person with cancer and their family which indicates that it has a focus which is transferable and adaptable. While the original model hasn t been updated there has been additional work on aspects as indicated above. Its explicit covering of spiritual care (taha wairua) is a positive inclusion. The stratified pathways approach is a worthwhile inclusion in this work as it comes from a chronic care modelling focus It points to a system where a person s holistic needs are addressed in combination between medical and social review, an alignment which has a closer base to Te Whare Tapa Wha principles. It has to be noted however one of the motivations for this work is around cost - as survivorship increases, how this is managed needs to be changed from a resource point of view. As with other chronic care modelling at times the question has been asked what the motivation for the programmes are and how this benefits the person.

13 13 3. Model for the delivery of psychosocial health services - Institute of Medicine of the National Academies (USA) Overview a combination of activities rather than any single activity by itself (e.g. screening, case management, illness self management) is needed to deliver appropriate psychosocial health care effectively to individuals with complex health conditions. The model above shows the relationships between key aspects of care which have been identified in delivering quality care and their relationship to each other. It is a model of service which can be adapted to inform various settings as to what aspects of supportive care need to be considered. The model has the following key functions: Establishment of effective communication between the person and the provider of their cancer care - indicates that it cannot be assumed as being present. (Information giving, dialogue about the persons beliefs and values and ensuring the patient is at ease are highlighted). Identification of the psychosocial health needs (including screening, in-depth assessment as well as self disclosure) Planning of Care to address the identified needs (how to link, support and coordinate) Linking of Patients to Psychosocial Health services (Structured Referral, Case Management, Onsite services, Navigators)

14 14 Supporting Patients in managing their illness. Coordinating both Psychosocial and Biomedical Health Care (MDT s IT systems) Systemically re-evaluating and adjusting plans. General comments: This model was developed when it became necessary for accreditation within the US health system for organisations to have in place psychosocial and other supportive care standards. In a way that hadn t happened before large medical providers had to invite supportive care to the table (AOSW2013). It was felt at that stage that the major challenge was organizational (Fann 2012 pg 1178) The model comes from review of a number of health models from chronic and mental health care and is seen as a unifying model for care delivery. Input to development came from a variety of professions and also examined care delivery in the primary care setting to inform the development. How depression is managed was a common influencer in this model. Sitting alongside this model to aid implementation are the principles of collaborative care. Collaborative care is an a practical way of addressing the challenges we have considered in delivering effective and integrated psychosocial care (Fann 2012 pg 1180) and has its origins in Wagner s model of chronic care. This supports how this first model sits within its wider contexts and aspects which need to be incorporated and changed to provide responsive care. This is a wider high level systems model with similar principles to Whānau Ora. It has been included as an example of how chronic care modelling has been adapted into the cancer space. Showing how it is important supportive care is integrated into cancer care rather than separate to it.

15 15 Critical Analysis It does not appear that this model sets out to address inequity in its initial form however all nearly all subsequent implementation articles more explicitly state how these components would assist. Equity Focus This model also supports the concepts of screening and patient navigation as a way of increasing engagement with high needs groups (similar to the concepts which support iwi/whānau Ora navigators) There is no clear evidence in the input of consumers to the development of the model though Consumer Input their input is recognized very briefly in the forward Interdisciplinary Throughout the supporting document and in development it has acknowledged a variety of input professionals and services Implemented Standards have been developed from this model to enable impact to be measured Reviewed Further development work has been undertaken Project Alignment The language in this model does not align directly with our principles but is also not in direct contrast. The combination of these components above has similarities to those within whanau ora. It states patient provider communication as a over arching principle which needs to encouraged as it is not as automatic as it is assumed The idea is also that this model is part of integrated cancer care rather than separate to it and occurs across the cancer continuum

16 16 4. Psychosocial Health Care for Cancer Patients and Their Families: A Framework to Guide Practice in Ontario and Guideline Recommendations Overview Psychosocial care should be considered an integral and standardized part of cancer care for patients and their families at all stages of the illness trajectory. Strategies to promote awareness of the significance of psychosocial health care needs and uptake of psychosocial health services should be encouraged. Ontario has a very robust set of standards and implementation plans supporting the provision of care. They have taken the US model, adapted it in places and added to the work in additional areas they felt were relevant.

17 17 Additional aspects to US Model: Raising awareness Responsibility of all health care providers/professions Patient and Family education Quality and Monitoring Workforce competencies Standardized Nomenclature (a common language and sharing of work) Research. Critical Analysis Equity Focus From what we can ascertain they do not have a clear equity focus yet - it looks as if one of their next identified focus is on their indigenous population and culturally and linguistically diverse populations with supportive care (Aboriginal Cancer Strategy Ontario Cancer Care 2013) Consumer Input There is no clear evidence of the input of consumers. Interdisciplinary Input Implemented Reviewed Project Alignment It is more explicit in particular around the input of other Allied Health disciplines and their place as part of team. This supports the NZ changes with the promotion of one of the principles of Whānau Ora, intersectorial working (Delivering Social Services Every Day, May 2014 NZ Govt) Palliative care has been included in the development as have primary care. The model also has a flow through into standards and some training in particular around communication. This communication work also addresses encouraging holistic care inclusive of spirituality. Initially published in 201, reviewed in 2013 and will be again in 2015 Additional work has been done on survivorship and palliative care and these have also been robustly reviewed. This model aligns more closely with our principles and vision than the USA model. In particular they are more explicit that when the wording refers only to patients it should be taken to mean family. Whether this takes these concepts far enough for our context where family/whanau are seen as more central and how they would move this into practice is not clear. However the addition of the domain of patient and family education is a positive one Interestingly it added a domain of raising awareness in order to decrease stigma - a component often identified on research as a barrier to access The organization as a whole follows a person centered framework and also has invested thinking into collaborative and inter professional care.

18 18 5. Providing Optimal Cancer Care: Supportive Care Policy for Victoria This second diagram is more of a implementation model which outlines the how to affect the changes required in supportive care delivery from the same work

19 19 Overview Best practice clinical care, coordinated care in a supportive environment and high-quality supportive care resources and services are required to provide optimal cancer care. The Victorian model is based on the Fitch model which determines need and moves out into planning to address those levels of need. Within this model it is more focused on an overall framework to improve supportive care than one about how to deliver supportive care however there are some elements which can be drawn upon. The Victorian model stems from a need to address the quality of delivery of care and set standards so in many ways this is also helpful. The principles behind the model include a focus on a person-centered (and family-centered) approach to care a system-wide and team approach, within and across services and sectors all health care professionals have responsibility for supportive care evidence-based protocols and processes The purpose of the Supportive Care Policy for Victoria is to promote: a strategic, population-based, person-centred approach to the provision and enhancement of supportive care for all Victorians affected by cancer capacity building for supportive care efficient and effective use of supportive care resources to meet the needs of those affected by cancer linkages between services within and across sectors to provide a network of supportive care resources and services that are accessible and responsive to the needs of those affected by cancer. Critical Analysis Identifies a need to focus on inequities in terms of concentration of resources to those with most complex needs. Appears to be a lack of cultural input or focus in this level of the work. Equity Focus There is no indication that those in high level of need, which isn't mental health, but in other areas such as financial or carer stress may be prioritised. It aligns closely with the triaging of distress and this may limit its ability to focus on other high needs areas of people affected by cancer. Consumer Input There has been input to its development from consumers Interdisciplinary There has been input to its development from a variety of professionals Input Implemented This model has been implemented and has workforce competency standards to aid with this. There have been reviews of services who have used this model and it is due to be more fully Reviewed Project Alignment reviewed shortly Unlike the other models it does not give a outline of how the aspects of supportive care are linked There is heavy emphasis on the need to screen and develop services at the each of the tiers What is missing is the how to achieve a consistent approach to service delivery and a model which indicates the principles behind the work. In the flow on work into specifics such as care coordination {Care cord report} there are linkages and the overall principles are being carried through As an overall framework this is a great resource as it essentially provides a base for how to increase the competency of the workforce in the area but it doesn t give that overall summary in the same way as perhaps the Ontario and US models do

20 20 Appendix A Supportive Care Framework Project Supportive Care Model Literature Review Plan Aim Approach / Sources Identify recent national and international literature related to supportive care models to inform the development of a NZ cancer supportive care model. General internet search using the following key words: supportive care, psychosocial care, collaborative care, cancer standards, support standards in cancer, Interprofessional working in cancer Review of the following specific sites: Government sites both national and international. Psycho-oncology sites. Academic research databases. Review of the Health Outcome International work on the national supportive care implementation plan, 2011 Visits to Auckland, Christchurch, Waikato, and contact with local services. Meetings with subject experts. In Scope Models of Supportive care which have been created and utilised within other cancer areas. Models which come from a wider base but which have a potential to contribute to this model development i.e. chronic care Models of Care which reflect Māori Models of Health. Models of Care from Pacific and other cultural backgrounds. Literature [post the 2011 HOI documents] will be included to ensure most recent developments. Work pre 2011 will be included where there are gaps in more recent research or where it still has ongoing relevancy. Out of Scope The review makes the assumption that the majority of stakeholders involved in this work are aware of the need for supportive care and its benefits. As such this literature is not going to be focused on this specifically. Critique approach What evidence is there that the model is based on person centred care/empowerment models/social Justice. Cultural context the model was created in and how is that reflected. What focus was there on Māori Health gains. What Equity approaches are evident in the international models. Model of care not model of understanding. Focus on models of practice. Principals behind the models and how do they align with our principles or needs in the NZ context eg funding system.

21 21 End products Where possible critique the method of construction was it co design, who where the influencers of the model. Terminology what is being used and how does that reflect the principles we are aligning to. Have the Models been implemented and is there any feedback. What was the purpose of the design - to change a system or capture current work. The document produced will be in a summary format to: Inform the model of care workshop Inform the Ministry to inform their work relating to psychosocial care Be provided to other cancer organisations as requested The document needs to be usable by all key stakeholders and the following will inform its production: Efforts will be made to steer away as much a possible from academic language and technical research terminology. For easier engagement in it will be a summary format with the models which are the most relevant being presented in a table format to allow easy comparison. It will be distributed prior to the workshop to allow for best value thinking in the day. The document is seen as a workshop tool rather than a complete resource on supportive care.

22 22 Appendix B: Websites for Models and Standards of Care NZ National Tumour Standards - Australia Victoria - Canada Ontario - Canadian Association of Psychosocial Oncology - UK NICE - American IOM - Health- Needs.aspx Commission on Cancer {American College of Surgeons} - NCCN-

23 23 Appendix C: Relevant Models of Care Te Pae Māhutonga Te Pae Māhutonga is the name for the constellation of stars popularly referred to as the Southern Cross. Te Pae Māhutonga is used as a symbolic map for bringing together the significant components of health promotion, as they apply to Māori health, but as they might also apply to other New Zealanders. The four central stars represent the four key tasks of health promotion: Mauriora Access to te ao Māori: values, whanau, customary land, language and knowledge, marae and culture i.e. secure cultural identity; Waiora Environmental Synergy: natural environment, clean water, air, protection from ecological risks, Turangawaewae and adaptation to modern environments; Toiora healthy lifestyles safety, exercise and healthy eating; Te Oranga participation in society, this includes some of the big picture aspects to health such as the macropolicies of the state, the valuing ingenuity, health services, socio-economic determinants of health, processes of society e.g. voting and access to technology. Health promotion is not the province of any one group nor is there a simple formula which can be applied. But if it is to be effective there are two important prerequisites: Ngā Manukura: - Leadership: community cohesion, workforce development, community leadership, health workers and dedicated health promotion, communities determining the who and the what. Te Mana Whakahaere - Autonomy: Self-determination, power sharing, community priorities, community ownership control and recognition of community aspirations (Durie, 1999). Primary care models There are numerous primary health care models emphasising roles of primary health care practitioners (often the first point of contact with the health system) including pharmacists, Māori home visiting nurses, health promoters, school counsellors, primary care counsellors, school nurses, interdisciplinary teams in schools, occupational health nurses, practice nurses and GPs, voluntary support groups etc. Enhanced and modern views of interdisciplinary primary health care teams see it as encompassing many elements of the other models in this list. Strengths model Emphasises individual, family and community strengths and builds on these. Developed as an alternative to diagnostic approaches that tend to categories people according to symptoms, ignoring socio-environmental and everyday occupational performance contexts. Recovery model The ability to live well in the presence or absence of one s (mental or other chronic/long term) illness. Emphasises the active role of people with health problems or mental illness in improving their lives. Fonofale model The Fonofale model was created by Fuimaono Karl Pulotu-Endemann as a Pacific Island model of health for the use in the New Zealand context. It is based on a Samoan holistic model that recognizes Samoan people s

24 24 health is best nurtured within the social context. The model takes Pacific perspectives and encourages holistic views and greater application of Pacific health models in New Zealand. This means better interdisciplinary collaboration across primary health care, mental health and social services c_island_player.doc Planetree Promotes the development and implementation of innovative models of healthcare that focus on healing and nurturing body, mind and spirit. Includes knowledge sharing, relationships, architecture and design conducive to effective relationships between users and service providers. Planetree was founded in 1978 in North America by a woman who experienced lack of personalised care in a hospital which threatened to overshadow the benefits of the hospital s high-tech environment. She took the name from the roots of modern Western medicine -- the tree that Hippocrates sat under as he taught some of the earliest medical students in ancient Greece. Biomedical model Prevailing in modern Western medicine, this model is based on assumptions that the mind and body can be treated separately; that the body can be repaired like a machine (mechanical metaphor); that technological advances will improve service delivery in this model; that reductionist explanations of disease are predominantly biological (to the relative neglect of social and psychological factors (specific aetiology). It has been argued that while medicine has huge beneficial roles, medicine s efficacy has been overplayed and self care and interprofessional services have been underplayed. (Nettleton, 1995). Wellness model Active process through which individuals become aware of and make choices toward more successful existence. Includes health and occupational satisfaction, creativity, meaning, purpose, choice, opportunity, balance, challenges, growth, equality, potential. This approach is built on combined knowledge from medical, reductionist, holistic, behavioural sciences and is a health promotion model. (Wilcock, p 230, 1998). Flinders Model of chronic condition self management Developed in South Australia following integrated care trials. These were initiated after new information systems showed a small proportion of people with chronic conditions were not having their needs met through primary care or specialist services. The SA HealthPlus Trial was one of the larger of the first round Coordinated Care Trials in Australia, enrolling 3,100 clients into its intervention arm. The Problem and Goals assessment was used routinely with all SA HealthPlus intervention clients. A generic set of tools and processes evolved, and there are several trainers in New Zealand who are in regular contact with Flinders University. The Flinders programme is included within some New Zealand development programmes for primary health care nurses, OTs, psychologists and others. The tools and training enable clinicians and clients to undertake structured processes that allow for assessment of self-management behaviours, collaborative identification of problems and goal setting leading to the development of individualised care plans. These care plans are important cornerstones in enhancing self-management in people with chronic conditions.

25 25 Stanford Self Management Model Designed to enhance regular treatment, The Chronic Disease Self-Management Programme is a workshop given two and a half hours, once a week, for six weeks, in community settings such as PHOs, community centres, Age Concern centres, churches, Marae, libraries and hospitals. People with different chronic health problems attend together. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with chronic disease(s) themselves. Topics and themes covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, and, 6) how to evaluate new treatments. Each participant in the workshop receives a copy of the companion book, Living a Healthy Life With Chronic Conditions, 3rd Edition, and an audio relaxation tape, Time for Healing. It is the process in which the program is taught that makes it effective. Sessions are highly participative, where mutual support and success build the participants confidence in their ability to manage their health and maintain active and fulfilling lives. The Division of Family and Community Medicine in the School of Medicine at Stanford University received a five year research grant from the US federal Agency for Health Care Research and Policy and a Californian State fund to develop and evaluate, through a randomised controlled trial, a community-based selfmanagement programme that assists people with chronic illness. The study was completed in Investigators included Halsted Holman, M.D., Stanford Professor of Medicine; Kate Lorig, Dr.P.H., Stanford Professor of Medicine; David Sobel, M.D., Regional Director of Patient Education for the Northern California Kaiser Permanente Medical Care Program; Albert Bandura, Ph.D., Stanford Professor of Psychology; and Byron Brown, Jr., Ph.D., Stanford Professor of Health Research and Policy. The Program was written by Dr. Lorig, Virginia González, MPH., and Diana Laurent, MPH of the Stanford Patient Education Research Center. Chronic Care Model (Wagner) There are six fundamental areas identified by the Chronic Care Model making up a system that encourages high quality chronic disease management. Organisations must focus on these six areas, as well as develop productive interactions between patients (who take an active part in their care) and providers backed up by resources and expertise. The changes can be applied to a variety of chronic illnesses, health care settings and populations. [Wagner EH. Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice. 1998;1(1):2-4.]