Palliative care

Palliative care helps you to live as comfortably as possible with myeloma. It is not only for the end of life – many people benefit from receiving palliative care from the time of diagnosis and throughout treatment.

We have outlined some key information about palliative care and myeloma on this webpage. If you would like to read more, see our infosheet below.

What is palliative care?

Palliative care helps you to live well and as comfortably as possible with myeloma, aiming to improve your quality of life.

It focuses on relieving the symptoms and side effects of your myeloma and its treatment. Palliative care also supports your emotional, social and spiritual needs, as well as those of your family and carers.

Palliative care includes a wide range of services and supportive care tailored to your individual needs, helping you, your family and your carers navigate challenges beyond physical symptoms.

There are many benefits to accessing timely palliative care. You may receive palliative care at any time during your experience of myeloma, including:

• when you are first diagnosed  
• during your treatment 
• during remission or stable disease  
• towards the end of life. 

What is the difference between palliative 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.

End-of-life care is a 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.

If you would like to know more about end-of-life care, see you infosheet below.

Who is part of the palliative care team?

The palliative care team is made up of different healthcare professionals who work as a team, known as a multidisciplinary team. Depending on your individual needs you may see:

• your general practitioner (GP)
• specialist palliative care doctors and nurses
• social workers
• psychologists
• pharmacists
• physiotherapists
• occupational therapists
• speech therapists
• dietitians
• spiritual or pastoral care practitioners
• volunteers trained in palliative care.

If you already receive, or are eligible for My Aged Care, NDIS or Aboriginal and Torres Strait Islander health worker support, then these will continue as part of your palliative care team.  

Palliative care is an approach to care, not just a specialist service. This means you may receive palliative care from your primary health service, with specialist palliative care involved when needed or for additional support. Everyone involved in your care contributes to supporting your comfort, wellbeing and quality of life.

How do my treating team and palliative care team work together?

Your haematologist and treating team focus on treating your myeloma and helping you manage symptoms and side effects related to treatment. 

The palliative care team works alongside your treating team to support your overall wellbeing and quality of life. They also help manage symptoms, but their role extends further. They support your physical, emotional, social, cultural and spiritual needs, as well as helping coordinate your care. 

Rather than working separately, these teams work in partnership. Together, they care for you as a whole person, not just your myeloma. This is why you may see a wider range of healthcare professionals involved in your care over time. 

I had severe bone pain from crushed vertebrae caused by myeloma bone disease. My haematologist suggested a referral to the palliative care team. At first, I was concerned because I thought palliative care was for end-of-life. Now I understand that that they are the experts in managing myeloma symptoms and side effects, and can help at any time. The palliative care doctors were able to prescribe a combination of pain medicines that really worked. I also saw a physio to help strengthen my back. I am now able to do my everyday activities without severe pain.”
– Georgios, Northern Territory

What services does palliative care provide?

Palliative care is person-centred, meaning it’s based on your individual needs. Services will differ for each person. This table outlines the types of palliative care services available so you know what you may ask for.

When I was diagnosed with myeloma, I was still working full-time as a teacher, and was a single mum with three young children. I was very stressed about finances and how my children would cope with the news. The social worker and psychologist from the palliative care team were amazing. The social worker was able to help me access financial support and negotiate flexible work-from-home arrangements with my employer. The psychologist helped me talk to my children about my diagnosis and linked them in with support that was suitable for their age through Canteen and Camp Quality.”
– Xin, Queensland

Why is it important to access palliative care earlier?

Palliative care supports more than just your myeloma symptoms and side effects – it supports your whole wellbeing. That is why starting earlier can be very helpful.

Accessing palliative care sooner rather than later can improve:

• your symptom and side effect management 
• your quality of life 
• the coordination of your care  
• your health outcomes 
• support for your family and carers. 

Accessing palliative care early may also allow you to put plans in place about how you would like to manage your future care through a process called advance care planning, if you have not already done this.

Advance care planning (ACP) involves discussing and making decisions about your future healthcare needs.

Read more about advance care planning in our quick guide below,

Supporting your support network

Having someone close to you diagnosed with myeloma is stressful and creates extra demands. It is important that your family and carers also receive the education and resources they need to support both you and themselves.A major benefit of palliative care services is that they extend to your support network, including your family members and carers.

Through palliative care services, your family and carers may be able to access:

• education about managing your myeloma symptoms and side effects at home 
• emotional support 
• financial support, such as a carer’s allowance 
• workplace support, including flexible working hours and leave arrangements 
• information and support for your substitute decision-maker(s) 
• in-home support, such as services and equipment 
• planned and emergency respite services. 

Who is considered family?

Who you call your family is up to you. It could include biological relatives, kinship networks, or your chosen family, including your friends or your pets. You also may choose not to have your family involved in your care. This choice is yours.

When Angelo was diagnosed with myeloma, I stopped doing all the things I loved that I know are good for me: like catching up with friends and going to Pilates. I would feel guilty doing these things for myself; life had become all about making sure Angelo was okay. But I also felt flat and isolated.
The pastoral carer at the hospital explained that these feelings are common with carers and talked to me about the importance of self-care. It took me a while to feel comfortable leaving Angelo at home, but I have managed to go back to my Pilates a couple of times a week and have coffee with a friend afterwards. I come home feeling revitalised and now make this a priority in my week.”
– Reyna, New South Wales