How to make planning ahead easier with our guide to end of life care for MND

Many of us find it challenging to think and talk about what we need to do to prepare for end of life.

We might put off making a will, appointing a power of attorney or sorting out the medications, health professionals, services and equipment we might need to help us remain comfortable and in control. Conversations about death and dying can feel awkward or upsetting.

Research has found, however, that it’s important to provide people living with MND, their carers and loved ones with opportunities to discuss their needs and concerns for end of life care, and how to access help available. Having an opportunity to talk can be beneficial, helping to create important interactions between family, and a greater sense of control over what’s going on.

Discussions about care at end of life are also very important for making sure the wishes and needs of people living with MND are respected. Talking can help with peace of mind.

To help support discussions about end of life care and MND, we developed a guide to what helps. The guide provides friendly and practical information about how to plan ahead, managing emotions, dealing with MND symptoms, remaining comfortable as the disease progresses and connecting to services and support available.

There are also tips and strategies for ways to have conversations with family, carers, friends and other loved ones.

Below we explain a bit more about the guide, and how it can be used, including its colour navigation system, a comprehensive index and useful summaries of important things to do and remember at each stage of the process.

• The basics
• How the guide was developed
• Ways the guide can be used
• For Health Professionals and others providing support
• Ordering the guide and more information

The basics

The guide is available as a full colour A4 book and in print from the MND Associations across Australia, complete with photos, illustrations, reflections from people living with MND and an index.

Some topics in the guide can be confronting to read and think about. Therefore, the guide was not designed to be read in one go. We’ve developed the guide to allow readers to dip in and out and read parts or topics when they feel ready or to find answers to specific questions or concerns.

We recommend reading the guide with the support of loved ones, an MND Advisor or a member of a health care team. We would also like to advise Aboriginal and Torres Strait Islander readers that the guide may contain images or names of deceased persons.

There are five parts in the guide. Each part has individual sections that provide specific information and advice on a common theme.

For example, Part 1: What Do I Need To Know? introduces some of the most important concepts, like the benefits of being organised, the need to have plans in place for medical, financial, legal and family needs, and when is a good time to start talking about end of life care.

Later in the guide, Part 3: What my family, friends and others close to me need to know explores ways to release tension and work through emotions through conversations with family and children.

The five parts are:

1. What do I need to know?
2. Things I’m likely to experience
3. What my family, friends and others close to me need to know
4. What else might I need to consider?
5. How do I get more help?

In the guide “carer” refers to a significant person in the life of a person who lives with MND and who supports them. A carer may be a spouse, partner, mother, father, son, daughter or a trusted friend or relative.

Some words and terms (e.g. advance decision to refuse treatment, ADRT, hospice, palliative care unit) that are used in the guide vary across states and territories. We advise readers to check with their MND Advisor or health professional team about terms that are used where you live.

The the guide is also available to download online.

How the guide was developed

We developed the guide over about a year with the close involvement of staff from the MND Associations and people living with MND and their carers.

To help make the guide easy-to-use and highly relevant to the needs of end of life care and MND, we drew on evidence of best practice for both clinical and palliative care, and what helps with sensitive and accessible communication.

The guide was adapted from a from the award winning, evaluated resource on end of life care from the MND Association of England, Wales and Northern Ireland. We built on the findings of the evaluation as well as including major pieces of information and advice, but tailored these for people living in Australia.

Experts from the MND and Palliative Care communities in Australia reviewed and provided feedback on the guide to help improve its information and accessibility.

We are currently gathering feedback on the guide and aim to find ways of enhancing its content and approach over coming years to help keep meeting the needs of people affected by MND.

Ways the guide can be used

The guide is a practical resource that tries to make it easier for readers to find information that is most relevant to them, and learn on their terms, when they need to. People living with MND, their carers and loved ones can read through and talk about information in the guide together so that they are able to:

• know more about what lies ahead, when it suits them
• think about and discuss their needs and wishes, at their own pace 
• make their own list of what needs to be done at certain times, using the summaries of major activities and tasks
• feel more organised and less stressed about dealing with the uncertainty of the future
• have more informed conversations with family, friends, health professionals and others
• make decisions that better meet their needs and wishes.

It may also help for readers to use the guide’s tools, tips and suggested conversation prompts. The guide can be:

• scanned quickly to find words, topics, phrases and ideas with its Index and table of contents
• navigated by the different colours of each section
• used to prepare and have conversations, and with the examples for questions to ask health professionals, topics for talking with children and young people and strategies for when and how to have conversations (e.g. finding a quiet space without distractions)
• a quick source of relevant support and services, with the guide’s last section providing important contact information.

For Health Professionals and others providing support

Health professionals and others supporting people living with MND may find the guide a useful resource to share when the topic of end of life care and MND comes up in conversation.

Sharing the guide is best done sensitively, and respectfully.

Listening to people living with MND as part of routine consultations or visits, or during discussions on specific interventions, offer important and sensitive opportunities to ascertain whether someone may feel ready to be introduced to the guide. Topics may come up as part of general conversation, or in a direct way as part of symptom management.

Below we’ve prepared some examples of ways that the guide might be introduced and which may help.

1. During a clinic visit a baseline respiratory assessment identifies that the person wth MND has signs of breathing muscle weakness. Discussions regarding respiratory support and use of non invasive ventlilation are initiated. The person with MND asks the specialist what happens if they decide they no longer want to use NIV and a discussion on withdrawal of NIV and advance care planning follows. The specialist introduces the person to information in the end of life guide on things they are likely to experience and advance care plans. 
2. A person with MND visits their GP following a referral to a local neurologist where a diagnosis of MND was given. The person informs their GP that they had been advised to ‘get their affairs in order’ but had no idea where to start. The GP talks through the diagnosis, refers them to the MND Association for ongoing support and introduces them to the End of Life Guide parts 1 and 3 “What do I need to know” and ‘what my family, friends and others close to me need to know’. 
3. A carer of a person with MND walks their MND Advisor to the car and expresses their concern regarding how their loved one will die and what will happen at end of life. The carer is worried that she won’t be able to cope. The Advisor talks through her concerns and offers ongoing support and a referral to a local specialist palliative care service. The Advisor provides the carer with a copy of the end of life guide and highlights the information on how people with MND usually die and the support services available.   

Having the guide on hand and ready to be shared in a discrete and organic way, rather than directly, can help to better support someone learning about end of life care on their terms, and when they feel ready.

Using the guide’s Index, table of contents and colour navigation system can help to share information quickly and easily.

Being mindful of someone’s emotions and general wellbeing as they learn about the guide is important. Mental health support is available to people living with MND and the MND Associations can help link them with support available.

The MND Info Line (Freecall 1800 777 175) or MND Australia can provide more information about the guide, ordering copies and what may help when sharing it.