CONSULTATION REPORT TASMANIAN PALLIATIVE CARE … · CONSULTATION REPORT TASMANIAN PALLIATIVE CARE...
Transcript of CONSULTATION REPORT TASMANIAN PALLIATIVE CARE … · CONSULTATION REPORT TASMANIAN PALLIATIVE CARE...
CONSULTATION REPORT
TASMANIAN PALLIATIVE CARE COMMUNITY CHARTER
PROJECT: PHASE 2 - SERVICE SYSTEM RESPONSE
Prepared for the Department of Health and Human Services Tasmania
December 2016
Prepared for [CLIENT NAME]
[Month Year]
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Acknowledgments
KP Health wishes to acknowledge and thank the Tasmanian service providers, peak
bodies, community support organisations, volunteer groups and individuals who
participated in this consultation and for providing valuable feedback and advice to
support further development of the Tasmanian Palliative Care Community Charter.
We also wish to acknowledge and thank the project reference group members, who
provided invaluable advice and support throughout the project. Reference group
members were:
Janine Arnold, Carers Tasmania
Lois Berry, Hospice Care Association North West
Rosie Crumpton-Crook, Canteen
Margaret Hughes, Social Work
Colleen Johnstone, Palliative Care Tasmania
Fiona Onslow, Hobart District Nursing Service/Hospice@home
Thank you also to Judy Clark for assisting us to hear the voices of Tasmanian Aboriginal
community organisations.
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Contents
Acknowledgments ......................................................................................................... 2
Executive Summary ...................................................................................................... 4
Summary of findings .................................................................................................. 4
Recommendations ..................................................................................................... 5
Background to this project ............................................................................................. 6
Consultation Methodology ............................................................................................. 7
Consultation Findings .................................................................................................. 10
Overall acceptability of the Charter ........................................................................... 10
Acceptability of the Charter principles ....................................................................... 11
Introduction .......................................................................................................... 11
Relief of Pain and Other Causes of Distress .......................................................... 12
Respect, Dignity and Person-centred Care ............................................................ 12
Good Communication ........................................................................................... 12
Co-ordination of care ............................................................................................ 12
Place of Care and Place of Death ......................................................................... 12
Fair Access to Care that meets Individual Needs ................................................... 13
Support for People Important to Us ....................................................................... 13
Help with Planning End-of-life Care ....................................................................... 13
Support for Aboriginal People in Tasmania ............................................................ 13
Implementation considerations ................................................................................. 14
A Compassionate Communities approach ................................................................. 18
Discussion .................................................................................................................. 19
Recommendations ...................................................................................................... 21
Appendix A: Participating Organisations and Services ................................................. 22
Appendix B: Tasmanian Palliative Care Community Charter - Draft for Consultation ...... 24
Appendix C: Information Sheet Tasmanian Palliative Care Community Charter - Service
System Consultation ................................................................................................... 26
Appendix D: Tasmanian Palliative Care Community Charter - Summary of Community
Consultations .............................................................................................................. 28
Appendix E: Information Sheet - A Compassionate Communities Approach .................. 30
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Executive Summary
The Tasmanian Government aims to improve access to quality palliative care across the
Tasmanian community, through the Better Access to Palliative Care (BAPC) program,
based on the Compassionate Communities Framework.
KP Health was commissioned by the Tasmanian Department of Health and Human
Services (DHHS) to develop a charter between Tasmanian community members and
palliative care and other service providers. A charter is in essence an agreement
between two or more groups or sectors of society. The Tasmanian Palliative Care
Community Charter (the Charter) is intended to communicate what care and support
community members want and need during their palliative care journey, and how the
service system may be able to respond to those needs. A draft Charter was developed in
Phase 1 of the Tasmanian Palliative Care Community Charter Project. The development
was informed by a literature review, extensive community consultation and expert advice
from the project reference group.
This is the report for Phase 2 of the Project. The purpose of this phase was to hear the
views of those involved in the palliative care service system in Tasmania, including
current providers of care and support and those who could be involved in a
Compassionate Communities initiative.
The objectives of the Phase 2 consultations were to:
seek feedback from stakeholders regarding the acceptability of the draft Charter;
share the findings of the community consultation with stakeholders;
seek service providers’ opinions on how their services currently support the
principles of the Charter and identify any barriers to implementation of the Charter;
seek stakeholder suggestions for implementing the Charter; and
determine the level of community organisation interest in engaging with a
Compassionate Community approach to palliative care.
Participants from 41 organisations and staff from 12 services of the Tasmanian Health
Service responded to the consultation.
Summary of findings
The service system stakeholders identified and invited to participate in the consultation
were highly engaged and consistently reported strong support for the Charter.
After review stakeholders identified that further work on the Charter is required to:
consider and reflect the unique palliative care needs of young people and their
families;
assist people with literacy, language and vision difficulties to read and
comprehend the Charter; and
further refine some of the specific wording of the Charter.
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Stakeholder responses also indicated that they:
anticipate that the principles of ‘Co-ordination of Care’ and ‘Good Communication’
will be the most difficult to implement within their organisation/service and have
identified need for implementation planning and access to support resources;
agree that the Charter is useful for their organisation/service and have identified
the document as a tool to assist with a number of activities including strategic
planning, service review, staff training, client orientation, community awareness,
advocacy and consumer empowerment;
support broad, high level endorsement of the Charter that includes government
agencies and services, health professional peak bodies and community
organisations;
suggest implementation of the Charter in Tasmania occur in a strategic and
structured manner, led by a sufficiently resourced organisation or collaborative,
and have identified methods to inform development of an over-arching
implementation plan; and
support a Compassionate Communities approach and identify that implementation
requires a long term view, sustained resourcing and an ongoing community
awareness campaign.
Recommendations
1. That the specific language of the Charter be further refined, informed by the
findings of this consultation.
2. That further work be undertaken to determine and document the unique palliative
care needs of young people and their families in Tasmania.
3. That the Charter is also made available in alternative formats, to assist people
with literacy, language and vision difficulties to read and understand it.
4. That the BAPC program team note the strong support for the Charter amongst
service system stakeholders and consider how their support can be formally
recognised and harnessed when seeking endorsement of the Charter.
5. That in phase three of the Tasmanian Palliative Care Community Charter project
the plans for implementation and evaluation of the Charter are informed by the
findings of this consultation.
6. That implementation of the Compassionate Communities Framework is informed
by the findings of this consultation.
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Background to this project
The Tasmanian Department of Health and Human Services (DHHS) Better Access the
Palliative Care (BAPC) program is based on a Compassionate Communities framework
and aims to improve access to high-quality palliative care across the Tasmanian
community. The Tasmanian Palliative Care Community Charter project is one of a
number of projects developed to help achieve the aim of the BAPC program.
A charter is in essence an agreement between two or more groups or sectors of society.
The Tasmanian Palliative Care Community Charter is intended to communicate what care
and support community members need and want during their palliative care journey, and
how the service system may be able to respond to those needs. The Charter is
underpinned by a Compassionate Communities approach, for detail regarding a
Compassionate Communities approach please refer to the Phase 1 project report.
The aims of the Charter are to:
give a voice to community members about their palliative care needs;
assist to raise awareness about palliative care and how we can best support
people to plan for death and dying; and
provide guiding principles to inform and underpin the delivery of palliative care in
Tasmania.
A draft Charter was developed in Phase 1 of the Tasmanian Palliative Care Community
Charter Project. The development was informed by a literature review, extensive
community consultation and expert advice from the project reference group.
This is the report of Phase 2 of the Project. The purpose of this phase was to hear from
those involved in the palliative care service system in Tasmania in order to determine the
overall acceptability of the Charter, the ability of organisations and services to implement
the Charter, and consider how the Charter could be implemented and evaluated.
In recognising that the Charter is part of the broader Compassionate Communities
Framework, community organisations, volunteer organisations and agencies included in
the consultation were also introduced to the concept of a Compassionate Communities
approach and asked about their level of support for, and willingness to engage with, the
concept.
KP Health conducted service system consultations between October and November
2016. This is the report of the findings of the consultation.
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Consultation Methodology
Objectives
The objectives of the consultation were to:
seek feedback from stakeholders regarding the acceptability of the draft Charter;
share the findings of the community consultation with stakeholders;
seek service providers’ opinions on how their services currently support the
principles of the Charter and identify any barriers to implementation of the Charter;
seek stakeholder suggestions for implementing the Charter; and
determine the level of community organisation interest in engaging with a
Compassionate Community approach to palliative care.
Stakeholder identification
An environmental scan was performed to identify stakeholders for inclusion in the
consultation. The list of stakeholders was then further developed with advice from the
BAPC program team and the project reference group. Stakeholders identified by other
listed stakeholders throughout the consultation process were also included where
relevant.
Three stakeholder types were included:
services and organisations that provide care and support for people at end of life;
organisations providing patient and carer support; and
relevant community organisations, health professional peak bodies and agencies.
A complete list of participating organisations and services is provided at Appendix A.
Consultation approach
Materials
Prior to the consultation, stakeholders were provided with:
a copy of the draft Charter (Appendix B);
an information sheet outlining the project aims and processes (Appendix C); and
a high level summary of the community stakeholder consultation findings
(Appendix D).
Community organisations, volunteer organisations and agencies also received an
information sheet outlining the concept of a Compassionate Communities approach
(Appendix E).
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Engagement activity
Consultants engaged with stakeholders using one or more of the following methods:
a) Individual or small group interview - stakeholders were contacted by phone
and/or email to arrange a meeting time. The consultant documented interview
responses.
b) Group presentation with individual survey response - stakeholders were
addressed as a group and provided with survey templates to provide written
responses.
c) Survey - stakeholders were emailed survey templates to provide written
responses. Stakeholders were also offered the opportunity to respond to a
consultant orally by telephone or by meeting arrangement.
Consultation questions
Stakeholders were asked to provide feedback and comment on three aspects of the
Charter. The following table outlines the areas of consultation and details the prompting
questions used by the consultant or survey tool as appropriate.
Aspect of the Charter Prompt questions
Considering the entire Charter document
How well does the Charter reflect the philosophy of your organisation? How does the language of the Charter resonate with you? Do you have any comment or feedback on the content of the Charter?
Considering each of the principles of the Charter
Which of the Charter principles is your service/organisation already implementing in practice? Can you provide evidence or examples? Are there any barriers to implementing the principles within your organisation/practice? What needs to be done to assist or support your organisation to implement the principles?
Considering how the Charter could be implemented, supported and used in practice.
Can you think of any ways in which your organisation could use the Charter? If your organisation was to support this Charter, what would be some practical ways in which your organisation could demonstrate that support? How do you think the Charter could be implemented? Would your organisation consider supporting or endorsing the Charter? How will we know if the Charter has been successful? How could we evaluate success?
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Community organisations, volunteer organisations and agencies were also introduced to
the concept of a Compassionate Communities approach and were asked about their level
of support for, and willingness to engage with the concept.
Compassionate
Communities
Prompt questions
Considering the
acceptability of the
compassionate
community concept
and willingness to
engage with a
Compassionate
Communities approach
to palliative care.
How do you feel about the concept of a Compassionate Communities approach? Where do you feel your organisation would fit in a Compassionate Communities model? Are there ways in which your organisation is already supporting a Compassionate Communities approach? What would assist your organisation in further supporting a Compassionate Communities approach? How could other service organisations and community groups (including volunteers) work together to help build a Compassionate Community?
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Consultation Findings
In general participating stakeholders were highly engaged with the consultation.
Participants from 41 organisations and 12 services of the Tasmanian Health Service
responded to the consultation resulting in an 74% response rate.
Please note when interpreting the findings below that numbers provided in brackets after
a statement indicate the number of responses that aligned with the statement.
Overall acceptability of the Charter
After reviewing the draft Charter, stakeholders were asked about their overall
impressions of the Charter, if the content reflected the philosophy of their service or
organisation, and their reaction to the overall language of the Charter.
Responses provided to the question ‘how well does the Charter reflect the philosophy of
your organisation’ were consistently positive, participants responded with phrases such
as:
‘Well, it reflects our way of working’
‘The overall tenor of the Charter fits very well with our [organisational statement]
of palliative care’
‘The document is very aligned with our organisation philosophy’
No respondents indicated that they felt the Charter did not reflect their organisational
philosophy.
Respondent’s over-arching comments about the language of the Charter were also
overwhelmingly positive, the most common descriptors within the responses were:
simple language;
easy to understand;
easy to read;
clear;
respectful;
concise; and
appropriate.
Whilst the overall feedback from participants was very positive, responses also included
a small number of concerns and suggestions regarding the scope and language of the
Charter, this included:
That the Charter doesn’t adequately capture the unique needs of young people
and their families (5); respondents suggested one or more of the following actions
to address this;
o identify the Charter as applying to adults only;
o include further content in the Charter that identifies the unique needs of
young people; and
o develop a separate Charter specifically for young people.
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That the Charter is too ‘wordy’ (4) and would benefit from the use of pictorial and
visual cues in place of some of the text or a more simplified version of the Charter.
That the literacy level of the document be evaluated to ensure that it can be
understood by people with reading level of 12 years (2).
That the Charter as a whole is aspirational and does not reflect what services are
currently able to provide (2).
That the Charter is too focussed predominately on end of life care alone and does
not address palliative care in its entirety (1). This respondent suggested the
Charter be expanded to address the entire scope of palliative care or be re-titled
to The Tasmanian End of Life Care Community Charter, to reflect its current
content.
Willingness to support or endorse
Participants (other than Tasmanian Health Service employees) were asked ‘would your
organisation consider supporting or endorsing the Charter?’ Responses were:
Yes (respondents from 33 organisations);
Yes, with the qualification that it would need to be agreed to by their
organisational executive or board (respondents from 4 organisations);
Did not respond directly to the question (respondents from 3 organisations); and
One respondent indicated that they felt their organisation would not consider
supporting or endorsing the Charter as the information was already available in
other documents.
Acceptability of the Charter principles
In addition to the comments about the language of the Charter already outlined in the
section ‘overall acceptability of the Charter’ some stakeholders provided further detailed
comment on the specific language of the Charter. The following outlines key comments
and suggestions raised by participants.
Introduction
In response to the introduction section of the Charter the following suggestions were
provided:
Include a definition of palliative care (4) in the introduction section of the Charter
as it is not a widely understood term. The World Health Organisation definition
was identified by two of the four respondents.
Define the word ‘carer’ as it is often misunderstood as a descriptor for paid carers
only (1).
Replace the phrase ‘approaching the end of life’ as it implies a short timeframe
rather than the full length of time that a person lives with a life-limiting illness (1).
Remove some of the language about Compassionate Communities to further
simplify the document (1).
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Relief of Pain and Other Causes of Distress
In response to this principle, the following suggestions were provided:
The phrase ‘free from pain’ was not realistic for all people and could be replaced
with an alternative such as ‘comfortable’ (5).
The proximity of the words ‘express our sexuality’ and ‘have pets with us’ was too
close and the two concepts would be more clearly articulated in separate
sentences (3).
Respect, Dignity and Person-centred Care
The final section of the second sentence of this principle states:
‘…respect the rights that our partners have to make decisions for us if we have lost
capacity.’
It was suggested that the word ‘partners’ is too narrow as many people do not have a
partner and those that do may not necessarily have chosen their partner to be the
individual who makes decision on their behalf (3).
Good Communication
Responses to this principle included:
Consider inserting ‘and let me be listened to’ within the wording of this principle
(1).
Include the need to allocate sufficient time for communication (1).
Include ‘supported communication’ for those that require it such as people with
intellectual impairment, cognitive impairment or any other illness which may
impact upon communication and decision making (1).
Co-ordination of care
Suggestions for this principle included:
Simplify the first sentence as it is repetitive (2).
Include identification of a team leader to coordinate, relay and receive information
pertaining to the patient’s care (2).
Include a sentence about continuity of communication and care across service
transfers (1).
That GPs be identified as ‘involved’ rather than ‘being communicated with’ in the
final sentence of the principle (1).
Place of Care and Place of Death
Suggestions for this principle included:
Be clear about the need for flexibility in the event that patients’ wishes regarding
their place or care and place of death may not be realistic (2).
Include the concept of shared decisions between the care provider and the patient
within this principle (1).
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That the words ‘peaceful’ and ‘home-like’ be reconsidered as not all homes are
peaceful and the intent would be a ‘place where I want to be’ regardless of
whether the environment is home-like or not (1).
Fair Access to Care that meets Individual Needs
Responses this principle included:
Specifically identify the needs of groups such as LGBTI people, CALD people and
those with disabilities either within this principle or in an additional principle
dedicated for this purpose (7).
The sentence ‘We need access to palliative care and other care when and where
it is needed, without us having to travel away from family and friends’ may set an
unrealistic expectation for people living in rural and remote communities in
Tasmania (2).
Support for People Important to Us
Suggestions for this principle included:
change ‘our carers need: education about reasons for providing or not providing
treatment options’ to ‘our carers need: education about the provision of treatment
options, opportunity to make an informed decision and to have that decision
respected (1); and
include identification of a key decision maker in the event that the patient is
unable to make decision for themselves. This should occur early in the end of life
care process to ensure that the patient’s wishes are considered even after the
patient is unable to relay them (1).
The final sentence of this principle is;
‘Our carers need: support after our death, both immediately and in the weeks following
death. They should never feel abandoned.’
One respondent felt that the phrase ‘weeks after death’ applied a very narrow time frame
for bereavement care. Another felt that the phrase ‘they should never feel abandoned’
would be very hard to ensure in practice for those individuals who experience medium to
long term grief, even with a Compassionate Communities approach.
Help with Planning End-of-life Care
One stakeholder questioned if everyone will understand the terms ‘Advance Care
Directive’ and ‘Enduring Guardian’. Another suggested that planning for arrangements
after death should also be articulated within this principle as people from some cultures
have very specific requirements for after death care.
Support for Aboriginal People in Tasmania
The final sentence of this principle states commences with ‘Give us a key contact person
who we can go to….’ Five respondents suggest that the sentence be rephrased to “Give
clients and their families a key contact they can go to…”
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Implementation considerations
Ease of implementation
In order to gauge the extent to which service providers believe their services already
meet the principles of the Charter and where they perceived further work would be
required to provide a service that reflected all of the principles of Charter, stakeholders
were asked to identify:
the Charter principles that they believe their service/organisation already reflect
well in practice; and
any principles that would be difficult for their organisation/service to reflect in
practice and how their organisation/service could be supported to further reflect
these principles in practice.
Respondents from seven organisations indicated that they believed their organisation
already met all of the principles of the Charter.
The remaining respondents identified individual principles that they believed they were
already able to meet; the most commonly cited responses were:
Good Communication (9);
Respect, Dignity and Person-centred Care (8);
Co-ordination of Care (6); and
Help with Planning End-of-life Care (6).
The principles most commonly reported as difficult for an organisation or service to reflect
in practice were:
Co-ordination of Care (14);
Good Communication (9);
Place of care and Place of Death (6); and
Help with End-of-life care (6).
Respondents from organisations that do not provide services but support those who
access services indicated that the issues most frequently reported by clients as causing
them concern related to the principles Co-ordination of Care and Good Communication.
Implementation challenges
Commonly identified barriers or challenges to implementing the principles identified by
respondents included:
clinical variation in approach to pain relief in palliative care;
lack of communication and co-ordination between providers;
unsustainable and/or insufficient funding models;
unclear care pathways;
lack of hospice facilities and dedicate hospital palliative care beds particularly in
North West Tasmania;
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lack of access to 24/7 care in rural and regional areas;
lack of staff training in the areas of
o supporting culturally diverse people with appropriate end of life of life
planning; and
o understanding the unique needs of culturally diverse people; and
lack of access to enabling technology.
Enablers of implementation
Stakeholders identified the following enablers to assist them in meeting the principles of
the Charter
Improving communication and co-ordination of care through:
identification of a team lead (individual or organisation) within the care team to
support co-ordination of care;
integrated and collaborative working arrangements between providers and the
wider community;
a consistent, evidence-based approach to pain relief and end-of-life care;
improving access to Advance Care Planning documents and other related
information by uploading them to a shared repository such as ‘My Health Record’
formerly the Patient Controlled Electronic Heath Record; and
establishment of community-based care co-ordinator positions.
Support for providers and carers through:
access to state-wide 24/7 palliative care support and advice for all care providers,
including carers;
provider education regarding:
o the needs of people from diverse cultures including how to assist with
culturally appropriate Advance Care Planning; and
o how to have honest and respectful conversations about decisions to
receive or not receive treatment;
a person-centred focus to information provided to people receiving palliative care
and their carers;
checklists for carers;
palliative care training for support staff; and
community education regarding end-of-life planning.
Sufficient and Sustainable Resourcing through:
increased infrastructure in North West Tasmania including at least dedicated
palliative care beds in major hospitals and preferably hospice facilities;
enhanced access to high-cost palliative care medications by improving availability
and affordability;
access to technology that supports the provision of care and advice in the home
such as internet-enabled devices for home-based and community-based services
and access to remote consultation with providers using internet-based
videoconferencing facilitates such as Skype and Telehealth; and
appropriate financial resourcing.
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Charter use
Stakeholders were asked to consider how their organisation or service could use the
Charter; responses included:
to influence organisational or service decision-making;
to review the extent to which services meet community expectations;
as a training/education tool for staff;
make the Charter visible in the workplace or care setting (posters, flyers);
promote the Charter in the community (community events, access in public
places);
provide the Charter to clients, carers and family; include in orientation packages or
processes;
to guide strategic planning and service development;
reference the Charter in organisational policies and procedures;
include the Charter in professional development activities for health professionals;
to support organisational accreditation;
to further support advocacy efforts;
as a basis for consumer satisfaction survey; and
to empower people to request a service that meets their needs.
Implementation support requirements
Stakeholders identified the following supports required to assist them in implementing the
Charter:
focused resourcing and a clear lead organisation/group; and
implementation support documents such as:
o guidelines that support flexible implementation approaches;
o education and training materials; and
o making the Charter available in multiple formats such as large print, with
pictorial support and in languages other than English.
Approach to Charter implementation in Tasmania
Endorsement
Stakeholders were also asked to consider how the Charter could be implemented
broadly. Responses indicated support for system level endorsement of the Charter by:
government;
health professional peak bodies; and
community organisations
Some stakeholders suggested that the Charter be publically launched and all endorsing
organisations ‘sign up’ to the Charter and commit their support.
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Stakeholders were strongly supportive of community ownership of the Charter, citing
examples of other palliative care projects and initiatives that have been successfully
implemented using a community-based approach. There was also support for the
implementation to be led by a collaborative, community cross-sector working party or
committee that is sufficiently resourced to effectively lead the implementation.
Some respondents suggested that the Charter be independently owned and publically
available on an independent website together with support materials and that the place of
the Charter with respect to other palliative care initiatives and the broader BAPC program
be clearly articulated so as to avoid confusion.
Implementation approach
Stakeholders suggested a structured and strategic implementation approach with an
implementation plan, communication strategy inclusive of a variety of communication
formats and a marketing/community awareness strategy.
Suggestions also included leveraging the Charter off other key documents and resources
such as:
the report of findings from the Tasmanian Inquiry into Palliative Care;
health professional statements;
other palliative care initiatives; and
Tasmanian Health Pathways.
Evaluation
Stakeholders were also asked how the Charter implementation could be evaluated,
responses included:
by an independent consultant/organisation;
upskilling community members to become evaluators; and
a self-assessment tool.
Stakeholders also suggested some aspects for inclusion in an evaluation such as:
evaluation of client, carer and family experience, through sensitive use of survey
and/or focus groups;
analysis of complaints and compliments data;
case review;
evaluation of provider opinion through survey, focus groups, peer review; and
measuring:
o community/provider awareness of the Charter;
o communication between providers;
o strength of partnerships across organisations;
o percentage of clients with advance care directives; and
o timeliness of referrals.
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A Compassionate Communities approach
Community organisations, volunteer organisations and agencies were also introduced to
the concept of a Compassionate Community and asked about their level of support for,
and willingness to engage with the concept.
Respondents from 17 organisations provided responses addressing the concept of
Compassionate Communities. All indicated support for the concept and most saw a clear
role for their organisation or agency within the approach. Respondents from four
organisations indicated that they believed their organisation was already positioned to be
a contributor to a Compassionate Communities model.
Some respondents commented on the size of the project, indicating that they felt it would
be a large undertaking requiring a long-term approach and ongoing resourcing.
Respondents also indicated that the following changes to ‘the current system’ would be
required to support a Compassionate Communities approach:
increased support and recognition for volunteers;
improved co-ordination and reduced duplication of services;
improved culture of shared-care between hospital based and community based
care providers; and
increased community awareness and education about
o options and services available for people diagnosed with a life-limiting
illness; and
o Advance Care Planning.
Concern about the approach included:
how to upskill the community in the context of low health literacy and possible
infrequent use of skills obtained;
how community organisations, particularly volunteer organisations, would be
supported, co-ordinated, educated and followed up in order to effectively engage;
and
the ability to achieve a Compassionate Communities approach within the existing
structure of the health system nationally with political/community sensitivities
regarding palliative care, death and dying.
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Discussion
There was a high level of engagement from identified stakeholders, more than 80 percent
of the organisations and services invited to participate provided a response to the
consultation. The consultation with service system providers indicates that overall
acceptability of the Charter is high. Respondents, in general, agree that the Charter is
philosophically aligned with that of their organisation and that the language of the Charter
is appropriate. Respondents from 36 of the 42 participating organisations indicated that
they believed their organisation would consider supporting and endorsing the Charter.
Whilst the overall feedback from participants was very positive, some respondents
indicated that the Charter in its current form does not adequately capture the unique
needs of young people and their families and that further work is required in considering
and documenting these needs. Participants also identified that the Charter may be
difficult to read for culturally and linguistically diverse people, those with low levels of
literacy and people with vision impairment. It was suggested that the Charter be made
available in alternative formats that assist reading and comprehension such as large
print, pictorial based and multi-lingual formats. Participants also provided some detailed
suggestions regarding the specific language used in the Charter. There is an opportunity
to use the findings from the consultation to inform the final draft of the Charter.
Whilst respondents from seven organisations indicated that they believed their
organisations were already providing a service that met all of the principles of the
Charter, the majority of respondents identified one or more principles that they believed
would be difficult for their service to implement. The principles of ‘Co-ordination of Care’
and ‘Good Communication’ were consistently identified as the most difficult to implement,
with ‘Co-ordination of Care’ reported at more than twice the level of most other principles.
Consistent with this finding, the barriers and enablers to implementation identified by
respondents were also heavily weighted towards items related to care co-ordination and
communication.
Respondents reported that the Charter would be useful for their organisation or service.
The Charter was identified as a tool to assist with strategic planning, service review, staff
training, client orientation, community awareness, advocacy and consumer
empowerment.
In considering implementation of the Charter in Tasmania, respondents suggested that
the Charter be endorsed broadly and at a high level; suggestions included endorsement
across whole of government, health professional peak bodies and community based
organisations. Respondents identified the need for a sufficiently-resourced lead
organisation or group to steer the implementation. A community-based approach was
strongly supported, as was a strategic and rigorous project implementation methodology.
There was also support for independent public access the Charter and its related
supporting materials and for clarity regarding the ‘place’ of the Charter with respect to
other palliative care initiatives and resources.
Respondents suggested that implementation tools and guidelines be developed that
allow for a flexible implementation approach across provider types. Stakeholder
suggestions regarding evaluation of the implementation of the Charter were limited, with
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most support for an independent evaluation process and the sensitive use of qualitative
assessments based on client, carer, family and provider experiences.
Participants from 17 organisations responded to the concept of a Compassionate
Communities approach. All were supportive of the concept and most were able to identify
their place within a Compassionate Community model. Responses also indicated that
respondents anticipated that application of the approach within the current system would
be a large undertaking, requiring a long-term approach, sustained resourcing and an
ongoing community awareness campaign. Respondents also identified some ‘current
system’ factors that would need to change to support a Compassionate Communities
approach in Tasmania.
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Recommendations
1. That the specific language of the Charter be further refined, informed by the
findings of this consultation.
2. That further work be undertaken to determine and document the unique palliative
care needs of young people and their families in Tasmania.
3. That the Charter is also made available in alternative formats, to assist people
with literacy, language and vision difficulties to read and understand it.
4. That the BAPC program team note the strong support for the Charter amongst
service system stakeholders and consider how the support can be formally
recognised and harnessed when seeking endorsement of the Charter.
5. That in Phase 3 of the Tasmanian Palliative Care Community Charter project;
plans for implementation and evaluation of the Charter are informed by the
findings of this consultation.
6. That implementation of the Compassionate Communities Framework is informed
by the findings of this consultation.
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Appendix A: Participating Organisations and Services
Participating organisations
Aged and Community Services Tasmania
Alzheimers Australia (Tas)
Anglicare Tasmania
Australian Association of Social Work (Tas)
Australian Medical Association (Tas)
Australian Nursing and Midwifery
Federation (Tas)
Australian Physiotherapy Association (Tas)
Calvary Health Care (Tas) & (Aus)
Cancer Council Tasmania
CanTeen
Cape Barren Island Aboriginal Association
Carers Tasmania
Central Coast Council
Circular Head Aboriginal Corporation
Clarence Council
COTA Tasmania
Family Based Care Association North West
Flinders Island Aboriginal Association
Friends of the Northern Hospice
Grow Occupational Therapy
GP Assist
Guardian Network
Hospice Care Association North West
Huon Regional Care
Independent Living Centre
Karadi Aboriginal Corporations
Live Tasmania
Local Government Association Tasmania
Masonic Care Tasmania
May Shaw
Migrant Resource Centre
Neighbourhood Houses Tasmania
Palliative Care Tasmania
Pharmaceutical Society of Australia (Tas)
Presbyterian Care Tasmania
Primary Health Tasmania
Rainbow Tasmania
RDNS Home Care
Royal Australian College of General
Practitioners
South Eastern Tasmanian Aboriginal
Corporation
Tasmanian Council of Social Service
The District Nurses / hospice@HOME
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Participating services
Tasmanian Health Service (North)
Campbell Town Health and Community
Service
Community Nursing
Specialist Palliative Care Service
St Mary’s District Hospital
Tasmanian Health Service (North West) Medical Advisory Committee
Medical Services
Smithton District Hospital
Specialist Palliative Care Service
Tasmanian Health Service (South) Chaplaincy Services
Specialist Palliative Care and Community
Nursing
Paediatric Services, Royal Hobart Hospital
Social Work (Paediatric)
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Appendix B: Tasmanian Palliative Care Community Charter - Draft
for Consultation
THE TASMANIAN PALLIATIVE CARE COMMUNITY CHARTER
The Tasmanian Department of Health and Human Services aims to ensure that all
Tasmanians have access to the best possible palliative care when they are approaching the
end of life, to help them die peacefully with dignity, compassionate care, and support for them
and their carers.
The Tasmanian Palliative Care Community Charter is the result of extensive consultations
across the state with Tasmanian community members, including Tasmanian Aborigines and
people from a range of cultures and social groups, which enabled them to say what they want
and expect from palliative care.
The Charter is underpinned by a Compassionate Communities approach which accepts that
palliative care is everyone’s business. At the end of life, we all need to know that services
and resources are available to us, our carers and other people who are important to us, to
support us at this time. This approach was strongly endorsed by the people of Tasmania
during the consultations.
The following principles reflect the voices of Tasmanians about what matters most to them,
and together form The Tasmanian Palliative Care Community Charter. The Charter
demonstrates our commitment to advocate for compassionate and quality palliative care.
STATEMENT OF PRINCIPLES
Relief of Pain and Other Causes of
Distress
The most important thing is being free from
pain and other distress, whether that
distress is physical, emotional or spiritual;
unless we are comfortable we can’t
appreciate anything else.
We need the right amount of palliative care
and other support, at the right time and in
the right place, delivered by skilled,
qualified professionals.
We want to keep life as normal as
possible, so we can participate in our usual
activities, eat and drink what and when we
want, express our sexuality and have pets
with us if that is what we want.
Respect, Dignity and Person-centred Care
We want to be respected for our individual
values, beliefs, culture, sexual orientation
and choices of who we want involved in
our care.
We want our carers and other people who
matter to us to be treated in the same way;
respect the rights that our partners have to
make decisions for us if we have lost
capacity.
We want be at the centre of planning at all
times, with support to manage our care
and make our own decisions if we want to,
without pressure from health care
providers to take a particular path.
We want to be cared for by people who are
experienced and culturally respectful of our
rituals of death and dying, the roles of our
family or other people in our community,
however those are expressed in the
community groups to which we belong.
Good Communication
Give us, and our carers if we agree,
information in honest, simple language
about our illness, what treatment is
available and, if possible, when we are
likely to die.
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Tell us and our carers what to expect when
death is coming.
Explain to us what palliative care is and
how it will help us.
Give us all the information and access to
care and support that we, or our family or
carers, might need.
Coordination of Care
Everyone providing care should talk to
each other and share information, so
everyone knows what everyone else is
doing and so we don’t have to repeat
information over and over. Keep a balance
between sharing our personal information
and respecting our privacy.
Make sure we know who you are, what
organisation you are from and what
support you have come to provide. Don’t
assume we’ll remember you from last time.
Our GPs and home carers are an
important part of our care team. Make sure
they are included in all communication.
Place of Care and Place of Death
We want choice and control over where
death occurs. If care at home isn’t
possible, we need a peaceful, home-like
environment where people who are
important to us feel welcome and, where
appropriate, encouraged to assist with
care.
When death is close, we and our family
need privacy, even if care is being
provided in a hospital.
Fair Access to Care that meets Individual
needs
We need access to palliative and other
care when and where it is needed, without
us having to travel away from family and
friends.
Affordable care and support needs to be
provided to everyone who needs it,
regardless of age, physical or mental
capacity, cultural background, religion or
sexual orientation.
We need a clear, understandable pathway
to access care and support.
Support for People Important to Us
Our palliative care journey will be easier if
our carers and other people who are
important to us are respected and cared
for as well. In particular, our carers need:
to have their knowledge of us and what
brings us comfort acknowledged and
respected.
education about reasons for providing
or not providing treatment options.
contact details for 24/7 urgent care and
advice, a check-list of what to do when
we die, e.g., who to phone first, what
needs to be done before the funeral
home staff are called.
support after our death, both
immediately and in the weeks following
the death. They should never feel
abandoned.
Help with Planning End-of-life Care
Help us to plan ahead, as early as
possible, for what treatment and care we
want, or don’t want, in case we can’t tell
you when we need the care and treatment.
This includes assistance to complete an
Advance Care Directive and to appoint an
Enduring Guardian.
Give us information about who will have
the legal authority to make decisions for us
if we lose capacity and haven’t appointed
our own substitute decision-maker.
Support for Aboriginal People in
Tasmania
Respect our wishes to go home or remain
on country to die.
Take the time to understand and respect
cultural considerations that affect us and
our families, including the role of family
and extended family in the dying process.
After the death, people may need the
opportunity for ‘sorry business’.
Give us a key contact person who we can
go to if we are receiving mixed messages
or don’t understand something.
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Appendix C: Information Sheet Tasmanian Palliative Care
Community Charter - Service System Consultation
What is a charter and what is it for?
KP Health has been commissioned by the Tasmanian Department of Health and Human Services to develop a charter between Tasmanian community members and palliative care and other service providers. A charter is in essence an agreement between two or more groups or sectors of society. The Charter is intended to communicate what care and support community members want during their palliative care journey, and how the service system may be able to respond to those needs.
The aims of developing the Charter are to:
Give a voice to community members about their palliative care needs;
Assist to raise awareness about palliative care and how we can best support people to plan for death and dying; and
Provide guiding principles to inform and underpin the delivery of palliative care in Tasmania.
How is it being developed?
Work on the Charter began in May 2016. A literature review, including published and ‘grey’ literature from national and international sources, was performed. From the literature review findings, a draft Charter was developed. After a process of extensive community consultation the draft Charter was refined to better reflect the specific needs of the Tasmanian Community. An expert Reference Group has also provided advice throughout the drafting process.
The draft Charter is now ready for discussion with relevant service providers. Once service provider advice has been obtained, the Charter will be refined before being finalised.
The diagram below shows the major steps in the Charter development process.
Literature Review / Scoping (complete)
Community Consultation (complete)
Draft Charter (complete)
Service Provider Consultation (Oct-Nov 2016)
Final Charter (by Jan 2017)
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What is this consultation for?
The purpose of this phase of the Charter development is to consult with health and community service organisations to:
Discuss the content of the draft Charter;
Provide service providers and support organisations with a summary of the findings of the community consultation;
Seek service providers’ feedback about how their service currently supports the principles of the draft Charter;
Discuss how the principles of the Charter are (or could be) put into practice; and
Seek feedback on the Compassionate Communities approach to palliative care and its implications for service providers.
The consultation process will commence in mid-October and close on 30 November
2016.
Whose views are being sought?
KP Health consultants are seeking the views of service providers across the state, including palliative care providers, relevant hospital and community services of the Tasmanian Health Service, private hospital services, hospice providers, aged care services and community organisations and volunteer groups involved in palliative care-related support and advocacy.
Why is the Charter important?
The Charter clearly articulates what the community requires from services that play a role in supporting people with palliative care needs.
The aim is that the Charter will also be a valuable and practical tool for service providers to inform service development and to ensure that services are responsive to community need.
Where can I get more information?
The Tasmanian Palliative Care Community Charter is a project of the DHHS Better Access to Palliative Care project. For more information about the Tasmanian Palliative Care Community Charter and how you can be involved, please contact KP Health Consultants, Rosie Beardsley at [email protected] or Amber Polles at [email protected]
For information about the Better Access to Palliative Care Initiative please visit http://www.dhhs.tas.gov.au/palliativecare/better_access_to_palliative_care_project or contact Flora Dean, Policy, Planning and Projects Consultant, Department of Health and Human Services at [email protected]
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Appendix D: Tasmanian Palliative Care Community Charter -
Summary of Community Consultations
Background
KP Health was commissioned by the Tasmanian Department of Health and Human Services to develop a Charter between Tasmanian community members and palliative care and other service providers. The Charter is intended to communicate what care and support community members want during the palliative care journey, and how the service system may be able to respond to those needs.
Work on the Charter began in May 2016. A literature review, including published and ‘grey’ literature from national and international sources was performed. From the literature review findings a draft Charter was developed. Then an extensive community consultation was undertaken to further inform the development of the Charter.
Who participated in the consultations?
Consultations with members of the Tasmanian community occurred throughout July and August 2016 through a variety of methods including focus groups, meetings, discussions and interviews. 148 community members participated (aged from late 20s to late 80s). Most had experience of caring for family members or friends at the end of life.
167 people participated in our survey, 77% of respondents were female and 33% male; 35% were aged over 80 years, 43% aged 50 to 79 years and 22% were less than 50 years of age. Half of the respondents were from the southern region, 42% from the North and 8% from the North West.
What were the main findings?
The main issues community members identified as being essential for the delivery of good palliative care in the community included:
Relief from pain and other causes of distress - including best possible pain management, symptom control and adequate pain management training for carers.
Respect, Dignity and Person Centred Care - people are informed and supported to make choices about their care, listened to, respected and supported according to their own cultural and social preferences.
Good communication with the dying person, their family and carers - honest, clear, timely communication, consistent sharing of information within the care team and information provided in a range of formats to support individual needs.
Co-ordination of care - communication between all members of the care team, including the carer, dying person and family.
Choice about the place of care and place of death- support to die at the place of ones choosing with access to services, equipment, palliative care support, family and friends.
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Support for people who are important to the dying person - including access to local respite, grief counselling and bereavement care.
Help with planning end of life care - ensuring plans and wishes are respected and adhered to.
Culturally respectful support for Aboriginal people and people from other cultural and social groups in Tasmania – through meaningful consultation and/or collaboration.
The draft Charter is underpinned by a Compassionate Communities approach to palliative care. A Compassionate Communities approach seeks to engage communities in supporting people with life-limiting illness. At the end of life, we all need to know what services and resources are available to use, our carers and other people who are important to us at this time. The Compassionate Communities approach was strongly endorsed by the people of Tasmania during the consultations.
The findings from the community consultations, together with advice from the project expert Reference Group informed further development of the draft Charter.
Next steps
The draft Charter is now ready for discussion with relevant service providers. Consultation with service providers will occur throughout November 2016. Once service provider advice has been obtained, the charter will be refined before being finalised.
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Appendix E: Information Sheet - A Compassionate Communities
Approach
What is a Compassionate Community?
A Compassionate Community supports all within the community to live as well as possible through to the end of life. A Compassionate Community:
accepts death and dying as a normal part of life;
recognises that caring for and supporting the dying is everyone’s responsibility and requires a partnership approach between health care providers, families, carers and the broader community;
provides supportive environments, systems and policies to enable people requiring palliative care to remain connected to and supported by their families, communities and natural supports;
mobilises personal, public and community resources to provide palliative and end of life care;
respects and responds to the needs and wishes of the dying person, providing as much choice and control as possible to support a person to have as good a death as possible; and
provides holistic care, addressing the social, physical, psychological, cultural and spiritual aspects of care for the dying person and their families.
Why is a Compassionate Communities approach important?
If we are to meet the palliative care needs of the Tasmanian community into the future we need to adopt a whole of community approach. We must draw on the strengths, resources and resilience that already exist in our communities and work together in partnership to provide the best possible care at end of life.
Communities, carers, families and the person receiving palliative care require knowledge, skills and resources to meaningfully participate in end of life care and engage as genuine partners. This can only be achieved by raising community awareness and understanding about palliative care, building capacity to plan for end of life and taking ownership of the palliative care journey.
Who is involved?
A Compassionate Community approach is inclusive; it connects formal and informal care networks. By working together as a Compassionate Community carers, family members, volunteers, community groups and organisations and health and community care providers work alongside one another.
The following diagram illustrates how the roles, relationships and processes of caring for and supporting a dying person and their family are recognised in a Compassionate Community approach.
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Compassionate Community the system level, the approach, vision, policy, principles, philosophy and values
Communities of Care the process level, how people, groups, services and networks come together to provide support for the dying person and their family
Circle of Support the outcome level, the roles and relationships of those involved in the person’s care
A community of care includes all of us: health care professionals, volunteers, social networks, clubs, neighbours, local organisations, faith groups, local businesses or people living in a particular area. Most importantly, it includes families, carers and local communities. A community of care is best represented by the Palliative Care Circle of Support.
Tasmanian Palliative Care Circle of Support
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Where can I get more information?
Information provided in this document has been adapted from materials developed by the Better Access to Palliative Care Team, Department of Health and Human Services (DHHS).
The Tasmanian Palliative Care Community Charter is a project of the DHHS Better Access to Palliative Care project. For more information about the Tasmanian Palliative Care Community Charter and how you can be involved, please contact KP Health Consultants, Rosie Beardsley at [email protected] or Amber Polles at [email protected]
For information about the Better Access to Palliative Care Initiative or the Compassionate Communities Framework please visit http://www.dhhs.tas.gov.au/palliativecare/better_access_to_palliative_care_project or contact Flora Dean, Policy, Planning and Projects Consultant, Department of Health and Human Services at [email protected]