Who is this for?

Whole of organisation; CEOs and Executive Leaders, Managers, Direct Care Workers, Support Coordinators, SIL Providers, In-home care providers

Introduction

The information and resource links listed below have been collated to support disability providers and support workers to increase their knowledge and service delivery support for and with people with a disability who have a life limiting illness and want to identify end of life care that is appropriate to their needs and choices.

This resource page has been developed to clarify the differences between palliative care and end-of-life care, improve understanding regarding when a link with palliative care can be helpful and outline the roles of different stakeholders, including disability service providers, to ensure people living with a disability can benefit from palliative care.

NDS will add to the information and resources as they are identified. NDS encourages disability providers, health workers and people with a disability, their families, or carers to please contact NDS if you are aware of useful resources or training that can be included. Please email Heather McMinn at submit enquiry/feedback for any inclusions.

Acknowledgements

This resource webpage was developed with the information shared by the disability and palliative care service sector representatives including the Victorian Disability and Palliative Care Advisory Group. Contributions have been identified to improve workers' knowledge of the information and support available for people with a disability with a life limiting illness.

The commitment to shared knowledge and resources aims at improving information and referral support access for people with a disability with a life limiting illness to increase choice and control related to end-of-life processes and death.

Understanding key terms

Life limiting illness

This refers to an active, progressive, or advanced disease that has little or no prospect of cure. While a person diagnosed with a life-limiting illness is likely to die from it at some point in the future, they may continue to live an active life for many years to come.

Common life-limiting illnesses include:

• Cancer
• Chronic Obstructive Pulmonary Disease (COPD)
• Chronic heart conditions
• Diabetes
• Neurological conditions such as dementia, multiple sclerosis (MS), motor neurone disease (MND), Parkinson’s disease, and Huntington’s Disease
• Stroke
• Epilepsy

Palliative care

Palliative Care is the name given to the specific care available for people living with a life-limiting illness to support them to live their best life. It is available for people of all ages and considers the family, carers or household members connected to the person. Palliative care is based on individual needs, values, and preferences and provided by health professionals who have a special interest, knowledge, and skills in supporting people with a life limiting illness.

Palliative care may involve:

• relief from pain and other physical symptoms
• planning for future medical treatment decisions and goals for care
• emotional, spiritual, and psychological support
• help for families to come together to talk about sensitive issues
• support for people to meet cultural obligations
• counselling and grief support
• referrals to respite care services.

Palliative care supports aim to improve the quality of life of people diagnosed with a life-limiting illness and their families. However, according to the World Health Organisation, only about 14 per cent of people who need palliative care currently receive it.

People living with a disability face additional challenges in terms of accessibility that could restrict or delay their access to timely palliative care services. In fact, existing research demonstrates that people with a disability are less likely to receive palliative care than people without disabilities.

Palliative care and end of life care are not the same. A person with a life-limiting illness can receive palliative care at any stage after diagnosis and may continue to receive it for years alongside treatment for their illness if needed.

End of life care

End of life care is available to people and their families/household members who are in the last weeks to months of their life. It is one part of palliative care. End of life care often involves bringing together a range of health professionals to support the person with a life-limiting illness to manage and relieve their symptoms as they approach the end of their life. People with a life-limiting illness can receive end-of-life care at home, in hospital, in a hospice or a residential aged care home. End of life care at home can include residential accommodation settings for people with a disability and the palliative care team can work with coresidents and disability workers as the person’s household members.

Advance Care Planning

Advance care planning (ACP) is the process of looking at the current and future health needs of an individual and documenting choices related to treatment, care or health interventions that might be needed when the individual is unable to speak for themselves at relevant times. An example of an advanced care plan is a person documenting their choice not to be resuscitated if they become unconscious when they have a life limiting illness.

Developing an advanced care plan involves a conversation with the person to explore their values, beliefs, and preferences with their family, carers and other key people who are involved in their support or care such as disability providers, health specialist and doctors. The advanced care plan provides the key people involved in a person’s life with instructions from the individual to assist with decisions about health treatment and interventions. This plan helps the key people involved to feel confident they are not guessing what the person may have chosen at a time when they cannot speak for themselves. Advanced care planning can be especially important for people with a life-limiting illness and the people supporting them.

Anyone can formalise their advance care plan through an advance care directive. It is sometimes called a living will. When completed this document can be added to an individual’s  My Heath Record so it is available to their treating doctors if ever needed. Forms and requirements for writing advance care directives vary between states and territories.

For information, please visit  Advance Care Planning Australia for a link to state and territory requirements.

Consent for disability providers to engage with health service supports  

Disability providers supporting a person with a disability with in home or residential accommodation day to day personal and daily living supports need informed consent to participate in the individual’s health related discussions. This is an important consideration for any health-related needs of a person with a disability including the support for a life-limiting illness. 

While health practitioners do not require consent to administer palliative care to a patient who does not have decision-making capacity for that care regardless of any decision of their medical treatment decision maker or any statement in an advance care directive, health practitioners must have regard to the patient’s expressed preferences and values and must consult with their medical treatment decision maker, if any. Learn more about patient consent through the Office of the Public Advocate resources on palliative care treatment. 

The palliative care journey map

A person with a disability and a life-limiting illness supported by a disability provider with in-home care or lives in a residential accommodation setting will interact with several care professionals from the health and disability sectors at various stages of their life limiting illness journey from diagnosis to end-of-life care. Sadly, the inherent complexities of these systems mean that the opportunity to get palliative care sometimes gets missed along the way.

The palliative care journey map below identifies the most important opportunities in a person’s health journey for the person themselves, their family or carers, disability workers and health practitioners, to link with a palliative care team for supports that can prevent a need for a hospital admission.

It is important for disability providers and workers supporting a person with a disability who is receiving in-home care or living in a residential accommodation setting to understand this palliative care journey map. The map can assist with support for individuals' disability workers and family, or carers involved in their life to access available support and services. Many people with a disability are admitted to a hospital setting for support or treatment associated with a life limiting illness and this may be avoided with appropriate palliative care team support.

The journey map:

Establishing a connection with a palliative care team

Referral

The journey map identifies the opportunities to link with a palliative care team through:

• a referral from GPs, medical specialists or other health practitioner
• a referral from a disability provider
• self-referral can also occur in some states and territories, for a person with a life-limiting illness
• family member or carer may also be able to refer a person with a life-limiting illness to a palliative care service.

Initial needs assessment

Once the referral has been received a palliative care team will contact the individual with a life limiting illness to arrange an appointment with the individual and their team. The initial meeting can include the key supports in a person’s life such as family or carers.

Where the person with life limiting illness also has a disability and is being supported through in-home or residential accommodation for day to day personal or living needs it is very valuable for a key worker to be included in the palliative care team meetings. Involvement in these meetings enables the disability providers to clarify expectations of their workers and setting or environmental considerations.

The palliative care team is comprised of medical, nursing, and allied health professionals.

The team may include:

• doctors and specialists
• nurses
• social workers
• physiotherapists and exercise physiologists
• occupational and speech therapists
• counsellors
• bereavement workers
• aged care workers
• disability support workers
• trained volunteers
• family members or carers can become part of the team, as appropriate to individual

Ongoing connection with a palliative care team

The person with a life-limiting illness will have regular appointments with the health professionals in their team. This is to monitor and adjust care if needed. While care needs are managed, contact with the team may be minimal or infrequent, but can increase as care needs change.

Resources

• Australian Commission on Safety and Quality in Health Care: Essential elements for safe and high quality end of life care
• Australian Government Department of Health and Aged Care 2023, What is palliative care?
• Australian Government Department of Health and Aged Care 2022, Advance care planning
• Australian Government Disability Support Guide includes palliative care
• Caresearch Pathways and Frameworks
• End of life and palliative care for people living with a disability - Better Health Channel
• UK: Palliative Care and Intellectual Disabilities

Palliative care providers

• Palliative Care Australia
  • National Service Directory
• Palliative Care ACT
• Palliative Care New South Wales
• Palliative Care Northern Territory
• Palliative Care Queensland
• Palliative Care South Australia
• Palliative Care Tasmania
  • Li-Ve Tasmania | Disability Support Guide
• Palliative Care Victoria
  • Palliative Care for People with a Disability
• Victorian Palliative Care Advice Service - 1800 360 000. 7:00 am to 10:00 pm, seven days a week.
• Palliative Care Western Australia

In Victoria:

• Victorian Department of Health End of life and palliative care framework:
  This is a guide for high quality end of life care for all Victorians. The framework redefines end-of- life care and guides improvements for providers across all sectors, as services are redesigned to be responsive and effective.
• Hume: Supported Disability Accommodation Services – Hume Region Palliative Care Consortium (humepalliativecare.org.au)
• North and West Metro: Disability and palliative care - North and West Metropolitan Region Palliative Care Consortium (northwestpalliative.com.au)
• Grampians region: Grampians Region Resources | Grampians Region Palliative Care Consortium (grampianspalliativecare.com.au)
• Loddon Mallee: Disability Services Staff – Loddon Mallee Regional Palliative Care Consortium (lmrpcc.org.au)
• Gippsland: Disability Services Staff – Loddon Mallee Regional Palliative Care Consortium (lmrpcc.org.au)
• Barwon South West - Barwon South West Region Palliative Care Consortium
• Eastern Metropolitan - Eastern Metropolitan Region Palliative Care Consortium
• Southern Metropolitan - Southern Metropolitan Region Palliative Care Consortium

Training:

• PEPA Learning Guide for Disability Support Workers.
  Program of Experience in the Palliative Approach (PEPA) PEPA is part of the Palliative care education and training collaborative has free health placements in palliative care services and free palliative approach workshops to empower health professionals to deliver palliative care. Health placements include in PEPA representatives onsite within support settings including disability. Supports and resources include workshops, placements, mentoring, community of practice and education and resources. PEPA operates across all States and Territories of Australia. PEPA has been consulting with the disability sector to enhance disability focused resources and support.
• Indigenous Program of Experience in Palliative Approach (IPEPA).
  IPEPA is also part of the Palliative care education and training collaborative and offers a range of resources and services with a focus on Aboriginal and Torries Strait Islander people support.
• Training Resources - End-of-Life Essentials

Useful tools

• Abbey Pain Scale
• Brisbane North Primary Health Network Disability and Palliative Care Tools: Tools and supports developed to increase end of life knowledge and care for disability and health care workers supporting a person with a disability with a life limiting illness. Includes self-assessment tools for workers and organisations to identify knowledge gaps and learning needs. 
• CarerHelp Support worker resources
  An initiative of St Vincent’s Hospital Melbourne, Flinders University and Carer’s Australia, this webpage of resources (while focused on aged care) has valuable content for carers, family members, and support workers.
• Council for Intellectual Disability Factsheets: Considerations for end-of-life planning and care
• Dis Dat Distress and Discomfort Assessment Tool
• Flying Doctor Memory Lane | Royal Flying Doctor Service A no-cost service that will support patients in end of life care to visit a place that holds meaning for them.
• Healthy End of Life Program (HELP)
  This page was developed through research at La Trobe University’s Public Health Palliative Care Unit (PHPCU). HELP is an integrated approach to end-of-life care. It aims to build the capacity of sectors, organisations, and communities to deliver a public health approach to end-of-life care. The HELP team work across three domains:
  • Research and evaluation
  • Education and training
  • Best-practice resources
• Improving palliative care services for people with an intellectual disability
  The University of Western NSW Department of Developmental Disability and Neuropsychiatry have launched a pilot component of this project, which aims to test new information resources to support the tailoring of palliative care for people with intellectual disability. The resources are for people with intellectual disability, their supporters and health professionals. To identify participation options refer to the details in Improving palliative care services for people with an intellectual disability
• Residential Goals of Care form 
• Southern Metropolitan Region Palliative Care Consortium Factsheets: Information and resources to assist workers and family or carers to support people living in residential accommodation with end-of-life planning, care and the bereavement process following a person’s death. 
• Supportive and palliative care indicators SPICT-4ALL 
  This page aims to make it easier for everyone to recognise and talk about signs that a person’s overall health may be getting worse over time. That means people and those close to them including carers can get more help and support whether they are at home, living in a care home or in a hospital.
• Talking End of Life …. with people with an intellectual disability resource page
  This page identifies how to discuss with people with intellectual disability about end of life. It is designed for disability support professionals (DSPs) but is also helpful for families, health professionals, and educators. With assistance, people with intellectual disability might also find the TEL information helpful. TEL reflects 10 years of Australian research on end of life and people with intellectual disability. TEL is an online version of the Dying to Talk project, an Australian Research Council funded partnership between The University of Sydney, Keele University in the UK, and Unisson Disability.

Other resources

Disability service provider developed

• Yooralla - Palliative and end of life care for people with disability
• Yooralla - Cancer screening for people living with disability

Hospital-based

• Disability Liaison Officers contact Disability Liaison Officers - VALID
• Victorian Directory of Key Local Health Contacts: Provides details of the Victorian Disability Liaison Officer Program and Local Public health Units. 

Contributions to this webpage are welcome

Please send your resource or webpage recommendations to Heather McMinn listed below.