Initiating end of life discussions

• Talking about death and the final stages of life can feel uncomfortable
• Supporting someone with their impending death, including people living with MND, may require not just one conversation, but a series of conversations¹
• Conversational skills are needed for talking effectively with people about the final stage of life, and these skills can be learned over time
• Some people living with MND don’t want to talk about death and dying, which is their choice and that is okay. It is important, however, that people with MND have opportunities to talk about end of life.
• Conversations and having plans and final wishes in place for end of life can reduce the levels of anxiety and worry
• Being familiar with End of Life Care: A Guide for People living with MND is important as it can support end of life discussions.

Death is a reality for us all but talking about it can feel uncomfortable. The conversation may evoke strong emotions like sadness, anger or fear, not just for those who are dying but for family, friends and professionals caring for them. In some cultures talking about death is off-limits. So it is not really surprising that talking about end of life can be challenging.

Things that people with MND may have concerns about include:

• How family and friends will cope with these conversations
• Differing opinions within the family regarding advance care planning
• Having their wishes understood and supported
• Fear of dying and what happens in the last days of life⁷
• Whether they will be in any pain
• How much control they may have around what happens in their final days¹

Carers may have concerns about:

• These conversations upsetting or scaring the person with MND
• What to expect in the final days of the person with MND’s life
• Being left alone and not knowing what to do
• What sort of support will be available for them
• What to do when death occurs

Feedback from MND association staff in the field tells us that it can be difficult at times to:

• Find the right words
• Start the conversation
• Find the right time
• Answer questions about end of life
• Deal with strong emotions (experienced by both staff and the people they support)

All of these things can generate anxiety about possibly saying the wrong thing or making a mistake, which may mean the conversation is avoided. Research also suggests that concern about lack of training, stress, inability to attend to emotional needs of the person affected or fear of upsetting them are some of the reasons why talking about dying is hard for healthcare professionals.^8–12

Australian clinical practice guidelines can help to address challenges⁷ in talking about end of life. Consider the recommendations conveyed by the acronym PREPARED:

1. Prepare for the discussion, where possible
2. Relate to the person
3. Elicit patient and caregiver preferences
4. Provide information, tailored to the individual needs of both patients and their families
5. Acknowledge emotions and concerns
6. (Foster) Realistic hope
7. Encourage questions and further discussions
8. Document

There is no one perfect time to talk about end of life. It is important to note that talking about death usually requires a series of conversations that take place over many interactions.⁷

There may be certain times, possibly during a period of deterioration, when approaching or revisiting the end of life conversation may be appropriate. Conversations may be triggered by things like percutaneous endoscopic gastrostomy (PEG) insertion, commencement of non-invasive ventilation (NIV), losing the ability to talk, further loss of mobility or increasing infections.

However, despite being a difficult conversation, it can be easier to do it when the person is relatively well rather than in a stressful time or at crisis. Discussing end of life while the person is able to speak certainly has its benefits and can help ensure their wishes are heard and included in end of life planning.

The conversation may start with a simple question. You don’t have to use the words end of life, dying or death, but can start by initiating a conversation with:

• What has your doctor told you about MND?
• What are you worried or fearful about?
• What are your goals while living with MND?
• Is there anything that you would like to ask me?
• Have you discussed your wishes with the people closest to you?¹

Over time, it is possible to build a relationship with a person living with MND that will allow continued conversation about the last days of life.

Having challenging conversations is a skill that can be developed, so seeking training and reflecting on practice are two good ways to feel more comfortable in this space.

Some people may never be ready to discuss end of life but it is important to find ways of having the conversation. That way you have afforded them the opportunity to talk about it and signalled that you are willing to discuss it.

1. Firstly, become familiar with End of Life Care: A Guide for people living with MND
2. Try attending behaviours, listen and be present and person-centred
3. Use open questions where possible, to encourage conversation and draw out information
4. Share reflections and conversation summaries to confirm that you understand what has been said
5. Acknowledge strong emotions
6. Use simple language that you are comfortable with and avoid clinical language and acronyms
7. Allow adequate time
8. Use a preamble (an introduction) to set up the conversation and ask permission to discuss it or to determine who you can discuss it with
9. Be sensitive to cultural considerations

Australia is a culturally and linguistically diverse society and as such, it is important to understand the needs of different communities when it comes to talking about end of life.¹³

There can be wide variation between cultures with regards to bereavement practices and beliefs about death. This can include how information about prognosis is disclosed and who should give it, concepts of disease, death and dying, spiritual considerations and customs around burial or cremation and other bereavement considerations.¹⁴

For example, for Aboriginal and Torres Strait Islander Peoples, death and dying is sometimes referred to as “sorry business” or “sad business” and talking about death or dying is a very uncomfortable experience which can be perceived as having the potential to impact that person’s journey. For this reason, warnings are commonly added prior to talking about people who have passed away, to protect Aboriginal and Torres Strait Islander Peoples from unnecessary stress.¹⁵

Cultural competence in talking about end of life requires more than just awareness of the differences. Training in cultural competence is encouraged to negotiate these discussions in a culturally safe and respectful way.

Further information can be found at:

• Palliative Care Australia
• NACCHO
• Centre for Cultural Diversity in Ageing

Language type suggestions and starters:

Preamble
I was hoping to discuss what your thoughts are around the support you may need further down the track. It can be difficult to talk about these things but it does help us plan to best suit your needs. Is it alright if we talk about this today?

General starters
Tell me what has been happening lately.
What is bothering you the most?
Is it ok for us to talk about what this means?
Given this news, it seems like a good time to talk about what to do now.

I wish statements
I wish I could say that the medication/treatment always works but unfortunately ...

Acknowledging emotion
I can see you are really concerned about ...
It’s hard to deal with all this.
I can hear how angry/sad/frustrated you are.

Advanced care planning
Would you like to have some control over your medical care in the future?
If you would like to leave these decisions to your carer/family/doctor, have you told them what you want?
What are you hoping for now?
As you think towards the future, what concerns you?

Affirmation
I think you have done a great job with all of this.
I’m so impressed that you have been able to talk with me about such a difficult topic, it’s not easy.

End of Life Care: A Guide for people living with MND is a practical information resource about planning ahead and end of life care for people living with MND, their carers and family members. The guide has relevant information about who to talk with to ensure that your client’s needs and wishes for end of life care are acknowledged and respected.

The guide is designed for use by people living with, or supporting someone, with MND. Printed copies of the guide are available from state MND Associations.

There are five colour coded sections of the booklet. People can progress through the sections at their own pace:

1. What do I need to know?
2. Things I am 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?

The guide was based on research from across the world and with input from health professionals in the field, MND state associations across Australia and most importantly, people who are living with or alongside MND.

• Palliative Care Australia
• Palliative Care NSW
• Palliative Care Queensland
• Palliative Care SA
• Palliative Care Victoria
• Palliative Care WA
• Palliative Care Tasmania
• Palliative Care ACT
• Palliative Care NT
• Palliative Care Nurses Australia
• Canadian best practice recommendations for the management of amyotrophic lateral sclerosis – see table 1: palliative care and caregivers recommendations¹⁶
• NICE Guideline: Motor Neurone Disease Assessment and Management – see recommendation: 1.7 Planning for end of life