Healthy dying for people with disability
Healthy dying for people with disability (HD4PWD) supports people with intellectual disability at the end of life. It supports people’s goals and delivers the best possible outcomes in life and death.
The program does this through:
- better systems and practices
- great communication
- educating and connecting everyone involved.
Communicating for end of life - a toolkit is a set of practical resources to build disability service providers’ and health service providers’ capacity and capability. It’s built around five elements – shared:
- decisions – setting goals together for the end of life
- accountability – working together to make sure the person understands their condition, so they can plan and make decisions about the end of their life
- communication – understanding the person’s communication style
- documentation – writing clear, accurate, relevant and complete information to support safe end-of-life care
- coordination – promptly coordinating care across service providers.
Communicating for end of life - a toolkit and learning module.
CareSearch, the leading national palliative care knowledge network, has partnered with Li-Ve Tasmania to develop and provide free access to the Healthy Dying for People with Disability resource Communicating for end of life- a toolkit and learning module. The evidence-based resource includes practical tools and a reflective practice learning module to build capacity and guide care for people with disability at the end of life.
Free access to primary care nurses
The Australia Primary Care Health Care Nurse Association (APNA), the peak body and professional membership association for all nurses working outside of a hospital setting, has partnered with Li-Ve Tasmania to provide free access to primary care nurses, who are critical in enhancing and complementing the care provided by GPs, to the Healthy Dying for People with Disability resource- Communicating for end of life – a toolkit and a practice review video to assist in putting the tools into action.
Working together for best possible outcomes
The risk of adverse events and preventable harm is reduced when everyone works together to support a person with intellectual disability at the end of their life.
The Communicating for end of life toolkit is for:
- disability support providers
- families of people living with disability
- carers
- health services
- health care providers.
Communication is key
Great communication is important to ensure safe, coordinated and continuous care at end-of-life.
Great communication supports person-centered care. Person-centered care:
- is personalised, enabling, and coordinated
- provides physical, emotional, psychological, and spiritual support
- achieves a person's goals
- delivers an ideal experience for people, their families and carers
- delivers the best outcome.
Alignment with national safety and quality standards
The recommendations in the toolkit align with the following national quality and safety standards:
- the NDIS Quality and Safeguards Practice Standards
- the Australian Commission on Safety and Quality in Health Care National Safety and Quality Health Service Standards Second edition 2021
- the Aged Care Quality and Safety Commission, Aged Care Quality Standards
- the Royal Australian College of General Practitioners (RACGP) Standards of Practice 5th Edition
- National Palliative Care Standards, 5th edition, 2018.
Toolkit training
If you would like to talk to the team about training in the use of the toolkit in your workplace please contact healthydying@livetasmania.org or call 6227 5400 and ask to speak to the Healthy Dying for People with Disability Team.
Download the toolkit
Download the complete tool kit or individual resources.
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Appendix A: Glossary
Appendix A -
Appendix B: Communicating for care - quick reference
Appendix B -
Appendix C: Top ten tips for breaking bad news
Appendix C -
Appendix D: My hospital passport
Appendix D -
Appendix E: Care alert kit
Appendix E -
Appendix F: SUPPORT ISOBAR
Appendix F -
Appendix G: Shared hospital plan
Appendix G -
Appendix H: STOP and WATCH
Appendix H -
Appendix I: Navigating end of life
Appendix I -
Appendix J: SMIT healthy dying
Appendix J -
Appendix K: Medical appointment form
Appendix K -
Appendix L: Tips for communicating with people with intellectual disability
Appendix L -
Appendix M - Diagnostic overshadowing fact sheet
Appendix M -
Appendix N - Complex medication administration in palliative care guide
Appendix N -
Resource list: Literature that informed HD4PWD
Resource list [PDF]
Have a question? We're happy to help. Contact the HD4PWD team healthydying@livetasmania.org.
The toolkit is made possible through funding from the Department of Social Services Information Linkages and Capacity Building (ILC) program.
Disclaimer and Copyright
While Li-Ve Tasmania endeavours to ensure the quality of all publications downloadable from this webpage, it does not accept any responsibility for the accuracy, completeness or currency of the material included in the publications and will not be liable for any loss or damage arising out of any use of, or reliance on, the publications. You are free to copy, adapt, modify, transmit and distribute the material as you wish but not in a way that suggests that Li-Ve endorses your or any of your services or products. To the extent that you do modify any of the publications, Li-Ve Tasmania requires that you remove any of its logos or other branding.
Happy to help!
What can we do for you? If you need a hand or more info, get in touch via:
phone on (03) 6227 5400, email hello@livetasmania.org or visit us on facebook