What are the key information and support needed by end-of-life carers?

Family members, friends, and neighbours who are caring for someone with a life-limiting illness can have different needs for information and support and these needs can change over time.

Having information can help carers feel more confident in knowing what to do and preparing for what happens next. Knowing where to find services and support is also critical.

It is important to remember that care needs may change over time and what you need to know as a carer will also change over time and as things change. Many carers want to know what is likely to happen as the disease progresses and what is involved in caring for someone at the very end of their life.

Some of the questions carers often seek information about include:

• What symptoms are likely to be experienced? How will I manage medications?
• How do I sort out finances and manage money and costs?
• What do I do in an emergency?
• What does dying look like?
• Where do I find support? And what services are available?

How can services and health professionals support end-of-life carers?

Depending on the person’s needs and the carer’s needs different health professionals and services may be involved. You may visit your doctor at their practice or be involved with a palliative care service. Some services may also visit you in your home. This is a good opportunity for you to have a list of questions or concerns that you want to discuss. Good communication is a very important part of providing quality care.

The health professionals will help the person with their symptoms and concerns, and can support you, as the carer, with information and with suggestions on how to be prepared and where to get different types of help.

Your doctor or others in the health care team may share with you a new resource for carers called the Carerhelp Information Pack.

People have different values, religions, and cultural practices, so the information people require may vary, particularly in relation to the way people view death and the caring role.

What is the CarerHelp information Pack and how can it help?

The CarerHelp Information Pack has been developed by the CareSearch Team at Flinders University working with St Vincent’s Hospital and Carers Australia as part of the CarerHelp Project.

We looked at all of the information that had been developed as part of CarerHelp and designed and produced a package of printed information and resources. The information is in an easy-to-read format and is organised by needs that carers have seen as important when someone is first diagnosed, when illness progresses, and when caring for a dying person.

The information pack offers carers a chance to reflect on different issues that may have come up in discussions with the healthcare team and they can also be shared with other family members.

There are factsheets dealing with common questions and concerns as well useful resources such as a contact list for problems and emergencies and a medication template for managing medicines. There are also tips from other carers who know what you are going through and information on helplines and services.