Download Why do we need supportive care standards?

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Supportive Care Framework Project
Literature Review Summary
Supportive Care Standards
Introduction
CCN has undertaken a literature review to inform the development of supportive care standards in NZ – see
Appendix A for methodology information. It is advisable to read the paper on the Models of Care first.
This summary document has been developed to support decision making for this workshop with respect to
what areas of supportive care we need to develop standards for and how do we want those standards to
look. This document contains an overview table of the main contributors to standards nationally and
internationally and more detailed analysis of each. See Appendix B for links to model and standards
documents reviewed.
What are Standards?
The Ministry describes standards as “………standards describe the level of service that a person with cancer
should have access to in New Zealand. They are used by the DHBs as the benchmarks for high quality care
for different types of cancer and help ensure patients receive timely, good quality care along the cancer
pathway.” http://www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/faster-cancertreatment-programme/national-tumour-standards
Why do we need supportive care standards?
One of the major impediments to the furthering of the area of Supportive Care is the ability to measure the
quality, access and impact of services. How the impacts of interventions are measured is not always a
quantitative science but in order for organisations to be held accountable for providing quality services we
need to be able to monitor. Measurement also allows us to identify gaps, issues with engagement and to
refine our work. Standards need to inform the workforce so they can be clear what is expected of them is
and how this fits within the systems they work in
Inequities are the presence of systematic disparities in health between groups and are where we can
achieve best health gains. Standardised health care delivers best health gains ( Scott, Nina, 2010) and as
such equity needs to be considered within each standard developed to ensure they contribute to Maori
health gains and reducing inequalities for groups experiencing them.
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What does the literature on Supportive Care Standards tell us?
The following general observations on the development, structure and implementation of standards have
been generated from the review of the literature:
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Standards have been developed to support the implementation of a supportive care model or policy
Standards perform at various levels - patient, practitioner, service, organization, system
Some standards have developed along a workforce competency framework rather than at an
organisational level
A generalised supportive care standard was the most common standard described in the literature.
Some countries have undertaken further work to describe standards relating to specific aspects of
supportive care in particular on workforce, palliative care and psychosocial screening
Work has been undertaken by several organisations to incorporate the principles behind person
centred care within standards but often it is a statement that organisations will work to provide
person centred care.
There is mixed consumer involvement in standards development at times standards have been
developed from a more research academic basis. In more recent work the voice of the consumer is
more evident.
Most standards have a set of principles behind them with common themes around the need to
identify and respond to distress.
The importance of family/whanau and supporting the support network is evident in more areas.
The importance of spirituality and a sense of holistic is care is in most literature around supportive
care.
The international work hasn’t had a large focus on the needs of particular indigenous or ethnic
groups although at times they reference the needs based on socio economic status.
Any work in the NZ context has been more explicit about equity responses and the need to improve
Maori Health gains.
As supportive care services are provided by both government and non-government organisations
the scope and application of standards need to be understood by all contributors.
Most standards make reference to, if not incorporate within them, the role of the NGO. In the work
wider to the NICE guidance this is more evident with joint work with agencies such as Macmillan.
Monitoring requirements were not easily identified for most of the standards
Standards give a clear focus to the level of education / training the workforce needs to provide
quality care to the people they serve..
With respect to complementary and alternative standards were around practitioners being able to
engage in conversations about these complimentary treatments in particular in a non judgemental
way rather than the treatments themselves. There is new work being undertaken around guidance
for mainstream health practitioners from the Ministry of Health re Tikanga a-Rongoa re standards.
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What does the Literature indicate as aspects Standards for Supportive Care?
In the Overview Table (page 5) it is clear that there are some very common aspects of supportive care for
which standards have been developed, including:
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Communication (Skills and needs of workforce and organisations, including breaking bad news)
Care Coordination often talked about in coordinate of someone’s supportive care and medical care
needs occurring concurrently
Psychological both in terms of specialist psychological support and as a way of group distress and
other coping techniques
Social in terms of both the aspects of the impact of other socio economic factors but also from a
organisation of additional responsibilities point of view
Spiritual and a move towards ensuring health professionals have the skills to support these
conversations.
Survivorship begins often in early documents as rehabilitation moving on to the wider
understanding of survivorship with some interesting work on Interdisciplinary involvement in
promoting return to work.
Palliative care as a distinct service, including appropriate and timely referrals.
Information from a communication perspective but also from a self management/informed consent
perspective.
Not all but many also include support for the family in particular children of patients, and grief
support
Some look at alternative and complimentary medicine
Screening for distress has a large body of work to support its implementation
Workforce specific competencies - breaking down the skills needed for those responding to different
level of need.
One of the gaps is that standards don’t refer to the physical space very often which is important both from a
privacy and engagement point of view. Many make reference also to cultural competency but not always to
what this may mean in most cases because of this work occurring separately.
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 are the areas of supportive care we need to develop
standards for and how do we want those standards to look.
As you review the information in this summary document please consider the following questions:
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What aspects of supportive care should have standards in NZ?
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Where do we target the standards ie at the quality of the services received by the person affected
by cancer, at the health care worker delivering the services, at the organisation contracted to deliver
the services or at a broader policy level?
What does international and national experience tells us is required to support the implementation
of standards?
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Key
Yes
Overview Table
Origin
NZ - HOI
Rubrics
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No
NZ –Tumour
Standards
Evidence of equity
focus or potential
but limited
to contribute to
Maori Health gain
Aspects of Supportive Care included in standards:
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Communication
Yes with comment
Canada - Ontario
Canada - CAPO
as separate
but limited
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Psychological
Social
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some streams
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Spiritual
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Ref not specific
Survivorship
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Referred to in
other areas rather
than standard
additional
standards
Specific separate
standards
Information
Other
Format of standards:
Organisational goal
Rationale
Good practice
points
Alternative and
Complementar
y
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In other
documents
Limited
Input into the development:
Consumer
More DHB
NGO
based
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Unclear
Australia Victoria
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Additional
work
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Workforce
Workforce[inclu
ding workforce
self-care}
Alternative and
Complimentary
Family specific.
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research justified
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research
Limited dependent
on stream.
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workforce
education
and
implementation
responsibilities
workforce
competency
based
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New work since
development
As part of other
aspects
Screening
tools/workforce in
terms of psychology
America
Limited
Separate
work.
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most streams
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UK - NICE
but limited
Care Coordination
Palliative
Comment
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Workforce
Screening
Screening
High level generic
statements.
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inclusive of
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in terms of
liaison with
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NZ Context
National Supportive Care Implementation Plan (HOI, 2011)
Health Outcomes International (HOI) was contracted by the Ministry to develop a national implementation
plan for the supportive care guidance. Recommendations included in the plan which relate to the
development of standards include:
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At the service, regional and national levels develop minimum data set to inform service contracting
& funding decisions in relation to psychosocial services.
Nationally articulate funding responsibilities for psychosocial supportive care across DHB boundaries
{i.e. should the tertiary centre fund care or should it be up to each DHB.
Nationally ensure referral processes for providing psychosocial support are included as part of
service specifications.
Nationally and regionally, develop minimum data set to identify need for different levels of
psychosocial support and ensure that there are appropriate staffing levels {FTE} to meet per capita
need.
Nationally and regionally specify the specialist FTE required to deliver psychosocial support as part
of integrated cancer care.
All levels collect and analyse data on the efficacy/effectiveness of psychosocial support services on
improving patient outcomes e.g. reducing unmet supportive care needs, lowering distress}, while
conducting evaluations of service processed.
Nationally, ensure that systems for monitoring and tracking psychosocial support data {e.g. service
utilization, patient distress data} are built into service agreements.
Assess patients’ practical barriers to accessing psychosocial supports and ensure appropriate
referrals to care coordinators and/or social workers.
In addition to developing the national plan, HOI worked with the Expert Advisory Group to develop draft
rubrics for each aspect of supportive care. A rubric is a way of articulating the expectations of a service by
listing the criteria, or what counts, and describing levels of quality from excellent to poor – see social
support example below. Equity was a key principle guiding the development of the rubrics and there is a
separate section describing equity and Māori health gain expectations across all aspects of supportive care.
The rubrics provide detail around what quality could look like and may be useful from a monitoring
perspective ie to support organisations to review their services against any standards.
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S OCIAL S UPPORT
Rating
Excellent and
equitable coverage,
access & quality
Very good and
equitable coverage,
access & quality
Good and equitable
coverage, access &
quality
Adequate and
equitable coverage,
access & quality
Descriptor
All of the features listed under ‘Very Good’ and in addition, all of the following:
 An integrated and coordinated system of continued social support provides
timely, accessible (with assistance with access where appropriate) support that
fully meet the needs of the full range of patient and family/whānau
populations
 An outreach model of care – proactive identification of cancer patients and
their families/whānau in the community whose needs could be met by support
services
 An ‘addressing inequalities’ focus drives social support policy, strategic
planning, development, monitoring and evaluation; those who experience the
inequalities are involved at all levels
 New and innovative models of social support are being researched, developed,
piloted and systematically evaluated in the region
The services in the region exhibit ALL of the following:
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Social support and wider needs of patients, carers and whānau are
systematically, routinely and proactively assessed and addressed using a
holistic assessment model
 Information on social support is available to enable patients to self manage
their needs
 Multiple types of high quality emotional, social and economic support are
offered in multiple settings (at home, respite care, etc)
 Social support services (government and non-government) are recognised as
core members of the MDT
 There is a highly stable, well-qualified workforce of experienced professionals
delivering support services in culturally appropriate ways and using highly
effective interpersonal communication
 The service design and implementation clearly reflect the relevant guiding
principles and best practices, including consumer and family/whānau
involvement, service responsiveness to Māori and Pacific peoples, whānau ora,
reducing inequalities in access and outcomes
 Services are generally proactive about anticipating and planning for future
needs
 Services are effectively promoted and communicated to diverse target
populations within the community
 Services have systematic evaluation in place that they use to continuously
improve the quality of and access to their services and address inequalities;
R&D may lead to innovations for extending or redesigning services
The services in the region exhibit all of the minimal requirements listed under
Adequate, any of the higher quality criteria listed under Very Good, and:
 Appropriate linkages exist between service providers and key professional
bodies, universities and others
ALL of the following minimal requirements are met:
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Social support and wider needs of patients, carers and whānau are assessed
and addressed using a holistic assessment model which is mostly up to date,
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but may be somewhat reactive or unsystematic
There is some success in integrating and coordinating different kinds of
services, but there is still room for improvement
 The system of continued social support is sufficiently timely and accessible that
it meets the important needs of the vast majority of patient and
family/whānau populations
 An adequate range (to meet the population’s most prevalent needs) of
acceptable quality emotional, social and economic support is offered in
multiple settings (at home, respite care, etc)
 There is a reasonably stable, sufficiently qualified and experienced workforce
of professionals conducting assessments and delivering support services
 The service design and delivery generally reflects the relevant guiding
principles – including consumer involvement, service responsiveness to Māori
and Pacific, whānau ora, reducing inequalities in access and outcomes – with
no serious exceptions
 Services have basic monitoring systems in place and use these to improve the
quality of and access to their services and address inequalities
 Services are adequately promoted and communicated to target populations
within the community
 Regional directories of social support services exist
None of the major gaps or quality problems listed under ‘Poor’, but there is evidence of
one or more of the following inadequacies:
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Inadequate equity,
coverage, access
&/or quality
Poor equity,
coverage, access
&/or quality
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Some efforts are being made to address inequities in access to quality social
support services, but may not be well designed or implemented, so that only
very minimal or no improvements are evident in equity of access
 Support services for key population groups within the community are
inadequate
Any one or more of the following major gaps or quality problems is evident:
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Numerous and ongoing serious problems with accessing the services are
evident (e.g. significant numbers of those in most need are not accessing
services; waiting times for services are highly problematic for patients and/or
families)
Significant gaps exist in the provision of support services that meet the needs
and access challenges of specific population groups
Inequalities in access to quality services are extremely serious or increasing
over time or inadequate efforts are being made to address inequalities in
access to quality services, and so the inequalities are therefore perpetuated in
the system
Individual support needs are not understood sufficiently to be able to
appropriately design or evaluate services offered
An unstable workforce (high staff turnover) or inadequately trained staff
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National Tumour Standards (MOH 2013)
In 2013 the Cancer Society NZ and PONZ collaborated on draft psychosocial standards which were provided
to the national tumour standards groups to inform the National Provisional Tumour Standards which were
published in 2013 for the following cancers:
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Bowel
Breast
Gynaecological
Head and Neck
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Lung (2011)
Melanoma
Myeloma
Sarcoma
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Lymphoma
Thyroid
Upper Gastro-intestinal
All tumour standard documents contain a cluster(s) relating to psychosocial care and /or care coordination.
The following two standards are included in all 2013 tumour standards:
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All patients with ……………… and their family/whānau have equitable and coordinated access to
appropriate medical, allied health and supportive care services, in accordance with Guidance for
Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health 2010).
Patients with ……………cancer have access to a…………….. cancer clinical nurse specialist or other
health professional who is a member of the MDM to help coordinate all aspects of their care.
Some documents also contain additional relevant standards, for example:
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All patients with a confirmed diagnosis of lymphoma have access to ongoing psychosocial services
(Lymphoma)
Patients are provided with verbal and written information and general practitioners (GPs) with
written information about bowel cancer, diagnostic procedures, treatment options (including
effectiveness and risks), final treatment plans and support services. (Bowel)
Women with breast cancer are screened with a validated tool to identify psychological and social
needs at key points of their breast cancer experience. (Breast)
Women or their family/whānau found to be experiencing significant psychological distress or facing
particularly difficult treatment decisions are offered prompt referral to a specialist psychological
service, as part of an integrated cancer service. (Breast)
Formal (validated) psychosocial assessments are undertaken at key points of women’s cancer
journeys. (Gynaecological)
Patients are taught self-examination. (Melanoma)
Patients who have had a limb amputated to treat their sarcoma are offered rapid and easy access to
prosthetic services, and a prosthesis that suits their needs. (Sarcoma)
Patients have access to appropriate rehabilitation services, including physiotherapy, occupational
therapy, and chronic pain and lymphoedema specialist services. (Sarcoma)
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There are monitoring requirements attached to many of these standards however, as reported by HOI in
2011 and more recently experienced by networks and DHBs undertaking service reviews against the
standards, data relating to supportive care activity and outcomes are very difficult to define, capture and
analyse. Midland Cancer Network is currently undertaking a regional service review against the supportive
care standards across all the tumour standards. Information from this project will guide the further
development of supportive care standards in NZ.
General observations from the analysis of the national tumour standards include:
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Each tumour standard was developed by a working party and for most, supportive care
professionals, NGOs and consumers were involved
Overall there is limited reference to the role of supportive care services, the workforce that provides
this and the value that NGO services bring.
The standards have limited detail describing the different aspects of supportive care, the
populations that would most benefit from supportive care services, the role of supportive care
services, the workforce that provides this, the tools and resources to be used and the value that
NGO services bring
As noted the monitoring requirements are not well defined and readily captured.
The standards are not described in a way that guide the workforce as to what services they need to
ensure their cancer patient is getting and how can they ensure that person is getting the supportive
care they need.
With supportive care being less defined in some tumour streams there is a danger of this disparity
being replicated in what services some tumour patients may receive.
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Canadian Context
Ontario
Approach
This group took the American work and adapted and added to it for their purposes as indicated in the model
work. Their work was then critiqued by independent review in terms of its content utilising groups of clinical
and research staff to evaluate work from a wide spectrum including Palliative and Primary Care. These
standards follow a domain or aspect of supportive care with recommendations for actions or workplace
competencies to support this. There are standards which are more specific to workforce and others to
services. Some of these standards have then been further developed into more expansive and explicit
standards as separate pieces of work.
Example Standard
Systematically Monitoring, Evaluating, and Readjusting Plans
18) Health care professionals should systematically follow up on the uptake of services by patients, as
well as any problems encountered, and patient satisfaction with care.
Domain C. Health Care Providers
All cancer care providers, including oncologists, palliative care physicians, family physicians, psychiatrists,
psychologists, social workers, nurses, dieticians, occupational therapists, physiotherapists, speech
language pathologists, spiritual care practitioners, health care administrators, volunteers, community
organizations, and other health care providers, have a responsibility to ensure that cancer patients and
their families receive the psychosocial standard of care.
Recommendations
 19) All cancer care providers should participate in education and training programs to increase
their awareness of the significance of psychosocial care and enhance their skills in the
assessment and management of psychosocial issues.
 20) Communication and patient education are expectations of clinical care. All health care
providers should seek training in these areas
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21) Health care providers should maintain a directory of resources available to patients and their
families at no cost.
Critical Analysis
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The voice of the consumer is not clearly evident, and while patient centred care is referred to this
isn’t always reflected in the language of the document.
The needs of the indigenous population are not evident or their needs appear to be seen as a
separate process (Cancer Strategy Ontario Cancer Care 2013) with little connection back to
mainstream documents. This would not be an approach that would work towards improving health
outcomes for Maori.
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The work from this area is well supported by research and rationale is provided for each point.
Because of the vigorous way it is reviewed it at times can be confusing to read.
It aims to try to achieve person and family/whanau centred care.
It gives service as well as workforce recommendations, including some NGO.
The authors of the work have acknowledged that while this work provided a robust base its
implementation has remained inconsistent. (Li 2012)
The additional domains added from the American Model make it a wider Supportive Care Model as
opposed to a more psychosocial model and it is a move towards meeting wider needs.
Its promotion of the use of clinical supervision to help with the wellbeing of staff is a sign of a group
in touch with the needs of the workforce.
It would provide a base to look at what aspects need to be considered but would need wider
expansion to make it more valuable for implementation.
What has arisen from this work similar to the other standards development is further work around
specific areas for example Palliative and Survivorship Care.
Survivorship care is a less developed area in these standards as was found with many of the others
too. Potential to include it in an overarching standard but also seek to do additional work in
developing more specific standards.
Canadian Association of Psychosocial Oncology (CAPO)
Approach
CAPO reviewed its Standards in 2010 and wanted to move into a more person centered care set of
Standards. They felt this was the right move away from more systems orientated methods and focus. They
acknowledge very clearly a struggle with definition between psychosocial care and supportive care
terminology. The standards cover off a wide range of aspects including key principles to care, what levels of
care are needed and who provides that care. A rationale is provided for each aspect.
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Example Standards
Standard of Care V: Survivorship
Individuals with cancer have the right to psychosocial and supportive care that includes availability of
professionals to meet needs related to the late- and long-term psychosocial effects of cancer treatment.
They are offered a survivorship care plan that summarizes the treatment received to date, follow-up
appointment frequency schedule with oncology and primary care, a checklist of relevant late effects of
treatment, and a psychosocial resource guide.
Rationale
Cancer survivors report ongoing difficulties in recovery and returning to ‘normal’ following treatment for
this life-altering experience. Survivors of cancer, although hearing that they are ‘free of cancer’, may still
experience fears of recurrence, and may have long-standing issues, such as depression, anxiety, and
impairment of cognition (Ganz, 2000; Hewitt et al., 2005). Body image, sexual alterations, and long term
functional changes are common, as are relationship and other social role difficulties, return to work
concerns, financial challenges, among others (Hewitt et al.) Cancer survivors commonly face these
psychosocial concerns and worries (Rowland, 2008), as do their family members (Golant & Haskins,
2008).
Critical Analysis
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Consumers were involved in the review
This was a concentrated effort to look at more person centred care and standards
The standards do however attempt to cover a lot in one statement.
They acknowledge the importance of the NGO sector how admit they struggled to articulate this
within the standards.
Language and terminology is an acknowledged difficulty
They have looked very closely at the requirements for staff education and what supportive care is
needed at different levels of facility, which provides a helpful tool when planning staff education.
As with other Canadian work the focus is not evident in mainstream documents around improving
the outcomes for their indigenous populations or high need groups..
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UK Context
NICE
Approach
Nice takes an approach which gives its recommendations and breaks them down to the various levels of
implementation in the UK context:
– national governments
– commissioners
– Cancer Networks
– provider organisations
– multidisciplinary teams/services
– individual health and social care professionals
– Workforce Development Confederations/the Workforce Development Steering Group in Wales
It covers each area as outlined in the Model and provides a set of recommendations. For the sake of space
this example is edited - each area has outlined within it the current state, what the problem is, what the
research is saying and then it outlines the levels of standards required to be maintained and improved.
Example Standards
7. Spiritual Support Services
A. Introduction
7.2 These questions re-emerge at various points in the patient pathway, but tend to be more focused
when:
– new symptoms appear
– side-effects of treatment become distressing
– patients must adapt to changes in their lives which have emotional and social consequences
– changes occur in relationships with key people.
7.9 There are indications that spiritual needs are not being met within cancer services. For instance:
– patients have insufficient choice in people to whom they can turn for spiritual care, and may be
unaware of choices available to them
– health and social care staff have insufficient awareness of how to access individuals who can
provide spiritual care
– health and social care staff may be reluctant to call for chaplains’ services or may not detect the
need for spiritual support at key stages of the patient pathway; some may feel awkward and
vulnerable when broaching spiritual issues with patients
– within the hospital sector, there are insufficient numbers of chaplains to meet needs, as they are
responsible for supporting all patients, not just those receiving cancer treatment or palliative
care
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B. Objectives
7.10 The objectives are to ensure that:
– patients and carers receive support, if sought, to make sense of difficult life events through an
exploration of spiritual and existential issues, including an effort to foster hope and promote
well-being within an integrated care approach
– health and social care professionals are able to acknowledge spiritual issues among patients and
carers and to respond in a flexible, non-judgemental and non-imposing way
C. Recommendations
C.2 Service configuration and delivery: specific recommendations
– 7.15 Providers and teams should ensure patients and carers are offered information about the
resources available for spiritual care within a particular organisation or community, as well as
information on how to access spiritual help and support.
– 7.19 Commissioners should ensure that multidisciplinary teams have access to suitably qualified,
authorised and appointed spiritual caregivers, capable of offering spiritual care in an open and
flexible way and who can act as a resource for patients, carers and staff. Representation may not
be needed within every team, but all teams should be able to access people with a spectrum of
skills and an agreed level of competence to support spiritual care.
C.3 Workforce development: specific recommendations
– 7.24 Skilled, sensitive and appropriate spiritual care can be provided by a variety of people,
including volunteers, family members, health and social care staff and faith groups. It is essential
that health and social care staff have the necessary skills, knowledge and support to deliver
sensitive care.
C.4 Research and development: specific recommendations
– 7.27 Research is needed to promote understanding of how spiritual needs and sources of
support of different patient groups evolve over time and how spiritual concerns are best
assessed and measured.
D. Evidence
– 7.29 There appears to be growing interest in the relationship between spiritual support and
health, but relatively little research has been carried out in this area. Some has centred on the
nature of provision of spiritual support for patients. Hospitals and hospices appear to be
changing the nature of their arrangements for spiritual support in line with changes in the
religious beliefs of the wider population. There is an increasing use of multi-faith/quiet rooms as
spiritual focal points in preference to traditional chapels, and expansion of the role of
chaplains/spiritual care givers from one that is purely religious [B]. There is also interest in
developing provision for spiritual support within the care home sector [B].
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Critical Analysis
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This work was undertaken with the input of consumers and clinicians. It looks at whole system
through to workforce needs and also includes NGO input.
This guidance looks at access issues for those from a lower socio economic group more than those
from a cultural base and the impact on care. This has some relevancy to the NZ context; however it
doesn’t provide guidance on how to improve health equity for a population.
Many of the statements from this guidance have informed standards work internationally.
The language used is understandable and less academic than the Ontario model for example.
However they are very big and can be overwhelming from a consumer and practitioner perspective.
The statements are explicit enough to be measurable but generic enough to be applicable in many
cases to a wide variety of settings.
The standards are broken down to different levels of responsibility from funding managers to
frontline staff.
They give guidance to the skills needed for the workforce to deliver effective care.
The document feels more person centred and family/whānau friendly, with specific standards for
this area.
Such extensive standards for aspects such as family and spirituality do give it some validity for our
purposes.
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Australian Context
Victoria
Approach
Victoria’s approach to standards for supportive care has been to develop competencies for the workforce. It
outlines in detail what is needed for health professionals to provide care across different aspects of
supportive care. This work is supported by an education program and resources dedicated to each topic. It
also defines these areas in regards to working with individuals, communities and organisations.
Example Standards
Addressing supportive care needs - Working with INDIVIDUALS
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Competency 4.1 - Demonstrates advanced communication skills by targeting support according
to discipline-specific assessment and is able to elicit and respond to emotional cues with
confidence
Competency 4. 2 - Communicates effectively with other members of the healthcare team and
refers appropriately to facilitate efficient cancer-specific intervention for current and potential
needs of the person affected by cancer
Competency 4. 3 - Plans and implements cancer care as part of a multidisciplinary team to meet
the physical, psychological, social, cultural and spiritual aspects and information needs of the
person affected by cancer
Competency 4. 4 - Networks with the other services and multidisciplinary team members
involved in the care of the person to ensure the care provided is part of a continuum of care
Competency 4. 5 - Provides information regarding specific cancer treatment, treatment effects
and multidisciplinary team contacts
Critical Analysis
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The Victoria model is an aid towards improving the skills of the workforce. It doesn’t look at how an
organisation should respond to care.
This is interesting in that it then has assumed that its organisations are ready to implement
supportive care and have systems in place.
There are some system and implementation guidance in wider work they have undertaken and
under the principles in the policy but not in a standardised format.
The Victoria workforce competencies are very comprehensive and very useable by staff. They are
supported by training resources around particular topics including spiritual awareness.
There is some standards which refer to the indigenous population and culturally and linguistic
diverse but there is not a sense of this as a priority. The needs of the Aboriginal and Torres Strait
Islander populations are often addressed in separate documents. Thus making it difficult to establish
how these standards would improve health outcomes for this population explicitly.
The push for screening without this being adapted to meet cultural needs will only increase inequity.
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There is some evidence of person centred care within the framework.
While these competencies would be useful in the workforce sense, the concern would be about how
organizations like DHB’s would be held accountable for their contribution to ensuring supportive
care is being delivered well.
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American Context
Approach
In the American context there is a variety of standards functioning at different levels:
 The standards from the American College of Surgeons covering aspects of Supportive and Palliative
Care are the overarching ones.
 The Institute of Medicine of the National Academies (USA) provides a well researched basis for its
model but only aspects of standards.
 The National Comprehensive Cancer Network (NCCN) provides some standards around aspects of
Supportive Care in particular around distress screening. Their Supportive Care guidelines refer in
most part to the context of medical management of side effects.
Example Standards
Institution of Medicine (IOM)
All cancer care should ensure the provision of appropriate psychosocial health services by:
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Facilitating effective communication between patients and care providers.
Identifying each patient’s psychosocial health needs.
Designing and implementing a plan that:
– Links the patient with needed psychosocial services.
– Coordinates biomedical and psychosocial care.
– Engages and supports patients in managing their illness and health.
Systematically following up on, re-evaluating, and adjusting plans.
Example Standards
National Comprehensive Cancer Network (NCCN)
Standards of Care for Distress Management
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Distress should be recognised, monitored, documented, and treated promptly at all stages
of disease and in all settings
Screening should identify the level and nature of the distress
All patients should be screened for distress at their initial visits, at appropriate intervals, and
as clinically indicated especially with changes in disease status (ie remission, recurrence,
progression)
Distress should be assessed and managed according to clinical practice guidelines
………………………………………………
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Example Standards
American College of Surgeons: Commission on Cancer
STANDARD 3.1 Patient Navigation Process
A patient navigation process, driven by a community needs assessment, is established to address health
care disparities and barriers to care for patients. Resources to address identified barriers may be
provided either on-site or by referral to community-based or national organizations. The navigation
process is evaluated, documented, and reported to the cancer committee annually. The patient
navigation process is modified or enhanced each year to address additional barriers identified by the
community needs assessment.
DEFINITION AND REQUIREMENTS
Patient navigation in cancer care refers to individualized assistance offered to patients, families, and
caregivers to help overcome health care system barriers and facilitate timely access to quality medical
and psychosocial care and can occur from prior to a cancer diagnosis through all phases of the cancer
experience. The navigation services implemented will depend upon the particular type, severity, and/or
complexity of the identified barriers. Prior to establishing the navigation process the cancer committee
conducts a community needs assessment at least once during the three year survey cycle to identify: the
needs of the population served, potential to improve cancer health disparities, and gaps in resources.
The results from this community needs assessment can serve as the building blocks for program
development, implementation, and evaluation.
STANDARD 3.2 Psychosocial Distress Screening
The cancer committee develops and implements a process to integrate and monitor on-site psychosocial
distress screening and referral for the provision of psychosocial care.
DEFINITION AND REQUIREMENTS
Cancer is a complex disease process that affects patients in a variety of ways. Patients experience
psychological, social, financial, and behavioral issues that can interfere with their treatment plan and
adversely affect their outcome. To address the psychosocial issues experienced by patients
with cancer, the 2007 report of the IOM, Cancer Care for the Whole Patient: Meeting Psychosocial Health
Needs, emphasizes the importance of screening patients for distress and psychosocial health needs as a
critical first step to providing high-quality cancer care. According to the NCCN, distress should be
recognized, monitored, and documented and treated promptly at all stages of the disease. In addition,
this report emphasizes that all patients with cancer need to be referred for the appropriate provision of
care and that high-quality psychosocial cancer care includes systematic follow-up and reevaluation. The
purpose of this standard is to develop a process to incorporate the screening of distress into the standard
care of oncology patients and provide patients identified with distress with resources and/or referral for
psychosocial needs. The psychosocial representative on the cancer committee (oncology social worker,
clinical psychologist, or other mental health professional trained in the psychosocial aspects of cancer
care) is required to oversee this activity and report to the cancer committee annually
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Critical Analysis
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There is the input of consumers in some aspects of this work.
The purpose of these standards is around ensuring compliance for an organisation.
The NCCN guidelines provide some very specific guidance around some aspects of care such as
distress screening.
The new guidance from the American College of Surgeons has begun to provide some interesting
guidance which looks at addressing the population needs to reduce inequity to support this work
but it is not fully developed.
There is an attempt within them to maintain a person centred focused however they are very much
about large organisations.
The wording and lack of overall systems approach limits the usefulness of these standards for our
purposes.
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Appendix A
Supportive Care Framework Project
Literature Review Plan
Supportive Care Standards
Aim
Identify recent national and international literature related to supportive care
standards to inform the development of a NZ cancer supportive care standards
Approach /
Sources
General internet search using the following key words: standards of supportive care,
psychosocial care, collaborative care, cancer standards, support standards in cancer.
Standards for psychological support.
Review of the following specific sites: Government sites both national and
international. Psycho-oncology sites. Academic research sites.
Review of the Health Outcome International work on the national supportive care
implementation plan, 2011
Review of the national provisional tumour standards
Standards which have been developed in other networks or workplaces obtained by
both site visits and connections with relevant subject experts.
In Scope
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Standards of Supportive care which have been created and utilised within
other cancer areas.
Standards which come from a wider cancer base which have a relevance to
supportive care.
Standards from international sources in relation to cultural competence
Standards from a variety of disciplines.
Standards from other areas of health which support similar concepts.ie
chronic care.
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.
Standards which provide useful formatting direction rather than content.
Out of Scope
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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
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What evidence is there that the standards are based on person centered
care/empowerment models/Social Justice?
What evidence is there that the standards have been measured against
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End product
improving outcomes for Maori?
What Equity approaches are evident in the international standards?
Cultural context the standards were created in and how is that reflected?
Principals behind the standards how do they align with our principles or needs
in the NZ context?
Where possible what was the method of construction - was it co designed,
who were the influencers of the standards?
Terminology - what is being used and how does that reflect the principles we
are aligning to?
Have the standards have been implemented and is there any feedback?
What was the purpose of the design - to change a system or capture current
work?
What organisations were included- did it extend into the NGO sector?
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 for the models 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
standards of supportive care.
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Appendix B: Websites for Models and Standards of Care.
NZ
National Tumour Standards - http://www.health.govt.nz/our-work/diseases-and-conditions/cancerprogramme/faster-cancer-treatment-programme/national-tumour-standards
Australia
Victoria - www.supportivecancercarevictoria.org
Canada
Ontario - www.cancercare.on.ca
Canadian Association of Psychosocial Oncology - www.capo.ca/CAPOstandards.pdf
UK
NICE - www.nice.org.uk/guidance/csgsp
American
IOM - www.iom.edu/reports/2007/Cancer-Care-for-the-Whole-Patient-meeting-Psychosocial HealthNeeds.aspx
Commission on Cancer {American College of Surgeons} - www.facs.org/qualityprogrames/cancer/coc/standards
NCCN- www.nccn.org/professionals/physican-gls/f-guidance.asp