The names that describe end of life doulas are as diverse as the role itself: death consultant, end of life carer, death attendant, death doula, death midwife, soul companion, end of life practitioner, or transition guide.
You might normally associate the term ‘doula’ with births, but their guidance can be just as impactful at the other end of life. It makes sense to have learned companions who can guide you through unknown territory at both ends of the mysterious journey. For thousands of years the family and community of many cultures have supported people to die at home. In recent decades many of us have experienced a stark medicalisation of dying, with the deaths of the majority of people taking place in unfamiliar sterile environments with their family reeling from information and emotional overload.
End of life doulas support the dying and their loved ones, bringing a wealth of knowledge about living, dying and grief. They can offer information and options to assist with decision making, and help people to achieve their final wishes. As well as practical knowledge, they bring compassion, encouragement and empathy to help families feel safer and less alone during the journey to their loved one’s death and beyond.
End of life doulas can assist people to reframe, if not embrace death as an inevitable part of life, and prepare them emotionally and spiritually for death. They can share their knowledge of the dying process which can allay fears of the unknown, and empower family members to participate in the creation of the death that the dying person had wanted.
Available services can range anywhere from a quick phone consultation to weeks of live-in care. End of life doulas bring a holistic approach to the home, aged care facility, hospital or hospice, and can work alongside the medical professionals and palliative care specialists who may also be involved.
Typical services can include arranging care or coordinating services, assisting with paperwork, listening and facilitating conversations, or helping to plan a person’s final days. What might be needed is a decluttering specialist to lessen the burden of sorting through a lifetime of possessions in the midst of grief. Queensland death doula Leigh Cusack from Kendall and Co was flown interstate to clean a house full of boxes of possessions so her client could die happily knowing she wasn’t leaving a mess for her family. Christy Moe Marek, an end-of-life doula from ‘Tending Life at the Threshold’ in Minnesota, USA, sees local patients in person and others via phone and video conferencing. She focuses on creating a safe space for clients to do the emotional and ‘soul’ work needed to help them prepare for their death, as well as helping the family to feel competent and central to the process and less afraid of the unknown.
What a individual brings to the role will differ so you should aways see if their approach aligns with your own before engaging a doula. Although pioneers like Zenith Virago have been working and training Deathwalkers for decades in Australia, the activity here has been limited compared with the UK, Canada and the USA. End of life doula and educator, Helen Callanan, from Preparing the Way, estimates there are at least 40 death doulas currently working in Australia. However the popularity of online courses and workshops offered by organisations like the Australian Doula College means that there will be many more end of life doulas available to choose from in the future, which has led to a new directory and also calls for new guidelines and accreditation. Victorian End of Life Doula, Maria Lazovic, has put together a great list of questions to ask when hiring a death doula to help find the right person for each unique situation.