End-of-life care

Everyone living with myeloma, and their family and carers, will eventually have questions about what happens when treatments stop working, or when you might choose to stop treatment. These questions often come up as you enter a phase called end-of-life care. We know this time can feel emotional and overwhelming.

We have outlined some key information about end-of-life care in myeloma on this webpage. If you would like to read more, see our infosheet below.

What is end-of-life care?

End-of-life care (which is sometimes shortened to EOLC) is the support you receive in the final stage of life, when death is approaching.

The goal of end-of-life care is to:

• give you the best possible quality of life
• support your emotional, physical and practical needs
• support your family members and carers
• maintain your dignity
• keep you comfortable
• manage your symptoms and side effects.

What is the difference between palliative care and end-of-life care?

Palliative care and end-of-life care share common goals: to support comfort, manage symptoms, and improve quality of life.

Palliative care can be provided at any stage of myeloma, including alongside treatments aimed at remission. It supports the physical, emotional, and practical needs of both the person and their family and carers.

End-of-life care is part of palliative care. It is provided when a person is approaching the final stage of life, with a focus on comfort, dignity, and support.

You can learn more about palliative care and how it can support you, your family and carers throughout your myeloma diagnosis in our infosheet below.

What should I expect from end-of-life care?

Changing the focus of your care

Stopping treatment aimed at remission does not mean that you will no longer receive medical care. Instead, your care will focus on comfort and quality of life. Choosing to stop myeloma treatment isn’t giving up. It is often a thoughtful and courageous decision.

Who will coordinate my end-of-life care?

Who coordinates your care depends on many factors, including your needs and where you live. If a specialist palliative care team is available near you, they may become your primary care team. Otherwise, your treating team may take a palliative care approach, working together with specialist palliative care services.

When my haematologist told me that my current myeloma treatments had stopped working and there were no other treatment options, I felt all the emotions: angry, sad, frustrated and scared. I didn’t know what to expect or how to tell my family. I was introduced to the palliative care team who explained that my care would now focus on my quality of life and comfort. I didn’t realise I would still have a whole team of different healthcare professionals looking after me.”
– Marek, Victoria

Symptom management

You may experience a range of symptoms during the end of life, such as pain, fatigue or changes to your appetite. Your palliative care team will manage these symptoms to keep you comfortable and to maintain your best possible quality of life.

If you would like to learn more about managing symptoms at end of life, see our quick guide below.

During many of my myeloma treatments, I experienced nausea and lost my appetite, and this continues now, even though I am no longer having treatment. The palliative care team started me on a continuous infusion of anti-nausea medicine through a needle that sits under my skin, connected to a small pump that I can carry around. My nausea is much more controlled, and I can now enjoy some of my favourite foods with my family again.”
– Elena, South Australia

Emotional needs at the end of life

Learning that your myeloma can no longer be treated with the goal of remission can be a shock. Deciding to stop your myeloma treatments is a big decision and can be unsettling. It is normal to feel strong emotions, including sadness, anger or fear. Your feelings may change from day to day, or even hour to hour.

Talking to someone can help. This could be a family member or close friend, or someone from your healthcare team such as a psychologist, counsellor or social worker.

You can also connect with the myeloma community through Myeloma Australia’s support services, through our Telephone Support Line and Information and Support Groups. Remember, you don’t need to go through this alone.

What is a ‘good death’?

A ‘good death’ or ‘dying well’ can mean different things to different people. It is often described as a death that:

• respects your values and beliefs
• maintains your dignity
• minimises your suffering
• maximises support for you, and your family and carers.

Thinking ahead about what a good death means to you, having open conversations, and planning ahead can help you feel more at ease during your end-of-life experience.

Planning ahead

Planning for end-of-life care helps to ensure your values, preferences, beliefs and choices are respected at a time when you may not be able to communicate this for yourself.

Advance care planning

Advance care planning (ACP) involves discussing and making decisions about your future healthcare needs. It helps ensure your preferences are respected if you become seriously unwell or are unable to speak for yourself. It’s ideal to start this planning soon after your myeloma diagnosis. But if you haven’t started yet, don’t worry – this is also something that the palliative care team can help you with, including helping to organise your legal documents.

If you would like to learn more about advance care planning see our quick guide below.

Talking about death and dying

Talking about death and dying can be challenging and sad for everyone involved – but it also helps everyone prepare in a meaningful way.

• Palliative Care Australia offers discussion starter guides, designed to help people think about what matters most as they approach end of life.

Talking to children about death and dying

Talking to the children in your life about death and dying can be very difficult. However, it is important to let them know what is happening. Having an open and honest discussion can reduce their anxiety and allow children time to prepare for the loss of a loved one. It may also be helpful for children to see a counsellor or psychologist during this time.

• Cancer Council’s Talking to Kids About Cancer guide can help you talk to the children and youth in your life about end of life, as well as your cancer diagnosis and treatment.

Leaving a legacy

A legacy is something that continues to live on after you have died. Many people think of legacy as leaving money or material possessions, but a legacy is also about leaving memories and meaning.

A legacy can include:

• the memories you may like to leave behind
• how you have made people feel
• the values you held and how you chose to live your life
• how you would like to be remembered.

Practical considerations

Thinking about where you would like to die

You may have an idea of where you would like to die. It is possible to die in the place of your choice, depending on your physical condition, support network and access to medical care.

You may choose to die:

• at home
• in hospital
• in a hospice
• or another suitable place.

Chat with your palliative care team about your preferences and how they may be able to support them.  

Celebrating your life and funeral planning

Everyone recognises the end of life in different ways. This may include a funeral, memorial, or a celebration held while you are still alive (sometimes called a ‘living wake’). You may wish to pre-plan the celebration yourself, or with your family and carers.

• Visit the Funerals Australia for funeral planning support and to find a funeral director near you.