End-of-life doulas: Compassionate support when it matters most

Talking about death can be difficult, but planning for the end of life can bring comfort, clarity, and dignity. End-of-life doulas provide emotional, practical, and spiritual support to people with life-limiting illnesses and their families. They help with advance care planning, navigating the healthcare system, and ensuring a person’s wishes are understood and respected.

In this article, Treza Gallogly, Chair of the End of Life Doula Alliance Aotearoa (ELDAA), shares insights on how doulas support people with MND—helping them find meaning, communicate with loved ones, and approach the end of life with care and respect.

What is a doula? 

Doula is a Greek word meaning ‘person of service. ’ Doulas accompany those transitioning into or out of their lives, hence the names ‘birth doulas' and ‘end-of-life doulas'.

An end-of-life doula provides nonjudgmental, nonmedical, holistic care to those who are advancing in age or living with life-limiting illnesses. We accompany them on their journey, educate them on their options so they can be empowered to make informed decisions about their care, and advocate for them when they can no longer do so for themselves. We also work alongside the family, whanau, or those caring for them. 

We provide practical, spiritual, emotional, cultural, and social support, weaving in and out of a person’s journey wherever and whenever we are needed, to help them prepare well for their death and live their best life. 

We do not replace the others in the care team but ‘fill the gaps’ where health providers—such as nurses and doctors—do not have the time to get to know the family on such a deep level or find the space for the required tender conversations. 

What’s happening in our communities? 

• A struggling health system.   

• A tsunami of baby boomers entering their ‘3^rd age’. 

• 38,000 deaths in NZ in 2023, forecast to be 54,000 in 2043. 

• More people want (or have) to die at home—pressure on carers and lack of confidence.   

• We’ve lost our connection with death–no one talks about it anymore. Therefore, there is a vast amount of fear around it. This makes it a lonely road for those approaching the end of their lives. 

• The focus is on living as long as possible, using medical and pharmaceutical solutions rather than accepting death as being an inevitable part of life.  

How can doulas help? 

I have had the privilege of working with two clients who were living with motor neurone disease (MND) over the past 2 years.   

My contribution to their care, included working on an ‘Advance Care Plan’—to learn more about the person, what’s important to them, what do they believe life’s all about, what do they want to happen (or not happen) in the event of an unexpected health event;  what would they wish for their death, and care of their body afterwards, memorial planning etc. Also, most importantly, what do they want to do with the time they have left. Legacy for their loved ones…  forgiveness, being forgiven, ticking off the bucket list. 

I also worked closely with both families, one whose children lived overseas. I was able to keep the communications clear and constant so that they could come home in time to be there when their Mum died. Working alongside health professionals is essential to ensure that all-around care is provided. 

We can also provide support after diagnosis. We can help unravel complicated medical jargon and explain treatment options. We can also help with dealing with the many phone calls from those providing care and coordinating them, inviting neighbours and friends to do rosters for meals, taking the kids to school, and helping with the tough conversations with those you love.   

But it's mostly about holding space and time for the person to express their fears and wishes and be heard. We can then advocate for them to ensure that their wishes are met. 

Founding of ELDAA and where to find us

In February 2024, the End of Life Doula Alliance of Aotearoa was established. www.ELDAA.org.nz. 

You can find more in-depth information about the role of doulas, guidance on what to look for when engaging a doula, and a directory of professional Doulas around NZ there. Please note that, depending on the situation, doulas can sometimes work remotely or travel. 

Unfortunately, doulas are not funded at this early stage of our development. Usually, we provide the first call or meeting for free to see if we are the right fit for each other, find out where you’re at, and suggest ways we can help. From there, we work with you to create a fee system for both parties. Working with us is not obligated, so it is worth an initial chat.    

It’s hard to know how a doula can help, so we encourage you to reach out and have that first conversation so we can meet you where you are on your journey and go from there together.   

Nga mihi nua, 

Treza Gallogly 
Chair, End of Life Doula Alliance Aotearoa, Inc. 

“The end of life deserves as much beauty, care and respect as the beginning.”  

~ Anonymous.