Li-Ve Tasmania presents new resources for primary health care nurses

Preparing for the end of life is a challenging time. For people with an intellectual disability it can be distressing and confusing and the role of primary health care nurses is critical in enhancing and complementing the care provided by the GP to improve the outcomes for people with intellectual disability, particularly at end of life.   

The role of the primary health care nurse in early clinical diagnosis, health promotion, illness management and communication are fundamental in ensuring people with an intellectual disability are provided with the same  level of care as anyone else in the community, as a fundamental human right.

An estimated 668,100 Australians (2.9% of the population) have an intellectual disability. Navigating the disability and health system is complex and at end of life, these complexities are compounded.

Compared with the rest of the population, people with an intellectual disability die younger. They often have multiple medical conditions, require specialist input, frequent hospital visits, and multiple medications. They experience:

• more than twice the rate of avoidable deaths
• twice the rate of emergency department and hospital admissions
• complex mental health conditions
• diagnostic overshadowing.[2]

In response to these health inequities, Li-Ve Tasmania has implemented the Healthy Dying for People with Disability project. The project is designed to:

• provide meaningful support and information for people with intellectual disability and their carers
• enhance the workforce capability of disability and service providers caring for people with a life-limiting condition.

The project achieves this by supporting improved systems, practices, and communication through education and connecting providers.

Communicating for end of life – a toolkit

Li-Ve Tasmania is pleased to present Communicating for end of life – a toolkit. This evidence-based resource is designed to link disability support providers, healthcare providers and services, families and carers. It contains a set of practical tools to build capacity and capability around decision-making, accountability, communication, documentation and coordination at the end of life.

Toolkit resources include:

My Hospital Passport

If a person with an intellectual disability goes into hospital, the passport provides essential information to hospital staff about their health, medication, communication needs, and contact details of their health providers and carers. It incorporates the principles of person-centred care by including what is important to the person, their likes and dislikes, and any details of care that are important to that individual. An easy read version is available so carers and people with an intellectual disability can work together to ensure all the right information is available for hospital staff to provide the best possible care.

Stop and Watch

This tool provides a practical way for disability workers to recognise, report and respond to any changes in a person’s health and wellbeing. Using the Stop and Watch tool may prevent a hospital admission as it helps to recognise a change of health and wellbeing early and seek health care sooner. An easy read version is also available to empower people with an intellectual disability to be a part of their health care by expressing their health and wellbeing concerns.

Tips for communicating with people with intellectual disability and Top 10 tips for breaking bad news

These tools highlight the importance of respecting the rights of people with intellectual disability. They are designed to help disability workers and health professionals understand the individual communication needs of the people they care for.

Diagnostic overshadowing of people with intellectual disabilities fact sheet

Diagnostic overshadowing is when a health or disability professional inadvertently attributes a person’s physical symptoms to an underlying intellectual disability. A direct result of such a misunderstanding is that a physical illness may be underdiagnosed or undertreated, creating the risk of premature death. This tool provides ways to reduce the risk and ways to make reasonable adjustments to care and to avoid diagnostic overshadowing.

The video provides a scenario based around the care of Lionel and some reflection of his care. It incorporates the use of the toolkit tools as a way to illustrate how the management of his illness may have been enhanced through the sharing of information and communication. 

About Li-Ve Tasmania

Li-Ve Tasmania is a leader in disability services, offering flexible and individualised supports to suit the needs of people and their families across Tasmania. Li-Ve Tasmania has provided genuine person-centred support to Tasmanians living with disability for almost 70 years. A registered NDIS provider, services include general supports, in-home support, supported independent living, disability accommodation, community access, and transportation and day support programs.

Communicating for end of life – a toolkit and support resources are available at: livetasmania.org/hd4pwd

The project is funded by the Australian Government Department of Social Services Information Linkages and Capacity Building (ILC) program.