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We sat down with Jo, a professional end-of-life doula, to learn about the role doulas play in supporting people during the end-of-life journey.
Q: What is an end-of-life doula?
Jo: An end-of-life or death doula provides non-medical support to someone who is dying and also supports people during their end-of-life journey.
Q: What inspired you to become an end-of-life doula? What's your 'why'?
Jo: I became interested in exploring our end-of-life practices and rituals, and supporting people in that. My 'why' now is a deep passion for empowering people and providing them with information to make their experiences easier, less traumatic, more loving, caring, slower and more gentle. I wish everybody knew the options available and the power and freedom we have regarding end-of-life choices.
Q: Did you partake in further studies to become a doula?
Jo: I studied under Denise Love - Death Doula Australia, and completed numerous online courses. I have also self-educated by reading many books.
End-of-life doula courses within Australia:
End of Life Doula Training 10966NAT - Certificate IV in End of Life Doula Services
Evidence-based end of life training Preparing the Way
End of Life Doula Training and Services
Q: What are some big misconceptions about being a death doula?
Jo: People often think that becoming a death doula leads to a busy and fulfilling career supporting people through the end-of-life. However, the demand for death doulas in Western culture is not yet fully realised. While many people are interested in doing this work, the demand is just not there - yet!
Q: Do you offer mentorships?
Jo: Currently, I don't offer formal mentorships, but I often receive questions through email and social media, and I help people to the best of my ability. If someone wanted to be mentored by me, depending on their needs, I would absolutely consider it.
Q: How do you separate work and personal life? How do you switch off?
Jo: Creating boundaries has been a long journey for me, but I've become quite good at it now. I have learned how to switch off, provide healthy support without over-servicing and prioritise my personal life. Working in the end-of-life space reminds me daily to live my life fully while supporting others.
Q: What end-of-life rituals have stood out for you?
Jo: Music is a powerful ritual during the end-of-life process. Reflecting back, I remember playing my grandmother's favourite old time war music, and she tried to get up to dance with us - that's something I will never ever forget. There is something special about playing music from key moments in someone's life that evokes happy memories for the person dying; until they no longer want it. At that point, people will just want their space to be quiet. Non-toxic, essential oils can also provide comfort. Thinking back to my grandma again, she loved lavender, so when I brought some in to burn, it brought a massive smile to her face.
Additionally, the threshold choir, a group of volunteers who sing at the bedside of dying individuals, is just incredible. Another ritual I love is involving families in washing and anointing the body of their loved one. This sacred healing experience helps the grieving process and brings understanding. There are also words and prayers that can be said while dressing the body for the funeral.
Q: Run us through a typical week of a death doula.
Jo: Is there such a thing! (laughs). I have regular phone calls and meetings with families who don't know where to start or need support or guidance. I meet the person who is dying or meet them when they have a prognosis, guiding families throughout the process. I may work with the same family from pre-death through to death and to the funeral service. Many doulas also participate in community outreach, visiting retirement homes, community centres and libraries to educate people on end-of-life planning.
Q: What is the life cycle of the families you work with?
Jo: I accompany families from the beginning to the end of their journey. When families are in or transitioning into palliative care, they often require additional support. I recall a situation where I worked with a family whose father was already in palliative care. His grown children needed to have important conversations with him but were struggling to get the information they needed. They used me as a non-emotional third person to address sensitive topics and discuss his funeral arrangements. The presence of an outsider, someone the dying person isn't emotionally connected to, can facilitate the process.
In the context of palliative care, while many professionals are exceptional, some may overlook the importance of educating families about normal aspects of the dying process. As a death doula, I bridge this gap by informing families and normalising these experiences. For example, I once worked with two teenage girls who were caring for their dying father. They were unaware of the concept of the 'death rattle' and the palliative care nurses had not informed them that it does not cause pain or distress. It can be distressing to hear such sounds without understanding their meaning. In situations where medical teams are overwhelmed or inadvertently overlook certain aspects, doulas like myself can step in, fill those gaps in knowledge, and help normalise the dying process for families.
Q: How do you help alleviate the burden that a dying person often feels towards their families?
Jo: By offering a paid service, I provide a sense of freedom and relieve them of this burden. It is fascinating to witness how they become liberated from emotional constraints and familial baggage when interacting with a completely neutral and compassionate person like me.
Q: How do you support families during the grieving process?
Jo: Grief support is a crucial part of my role as a death doula. I offer compassionate listening, emotional support and guidance to help families navigate the grieving process. I provide resources, recommend support groups or therapists, and assist with creating personalised rituals or ceremonies to honour their loved one. I also help normalise the grieving experience and provide a safe space for families to express their emotions.
Q: Have you encountered any challenges in your work as a death doula?
Jo: Conflict within families is a common occurrence during end-of-life situations, funeral planning, and estate matters. People's true colours, both their best and worst sides, tend to emerge during these intense times. As a death doula, I often engage in active reflective listening to provide support and validation to family members. While I'm not a trained mediator, I offer a space for individuals to express their experiences and frustrations. We have to be very careful to stick to our lanes, if conflicts escalate then I strongly recommend seeking the assistance of a trained mediator. I have had families have separate meetings, even funerals or face challenges in coming together due to the intensity of the situation, it is after all such an intense time.
Q: What sets the role of a death doula apart from hospice or palliative care?
Jo: While some doulas may have a background in nursing, medicine, or palliative care, our primary focus is on non-medical support. We receive education and training in understanding the dying process, medications, and related aspects. However, we are not medical professionals. Our role revolves around emotional support and providing information to families. This is the significant distinction between doulas and medical staff.
Q: Have you noticed an increased interest in death doulas over the past few years?
Jo: The interest in doula work has grown in recent years, with a global thirst for knowledge in the field. While the demand for actual doula work varies, the interest and the thirst for knowledge is a great thing!
Q: Have you noticed a shift in society's comfort level with death and grief?
Jo: I do believe there's a positive shift happening. Thanks to platforms like social media, such as Instagram, Facebook and Tiktok, there is now more easily accessible information. People are exposed to conversations and perspectives they wouldn't normally have sought out otherwise - so it's a really good thing!
The significance of a death doula's work cannot be overstated. Their unwavering dedication, empathy and compassion provide a priceless gift to those facing mortality. By embracing this profound journey alongside individuals and their families, death doulas ensure that each transition is met with love, dignity and a deep sense of understanding.
Interview with Joanna Lincolne
Funeral Celebrant, Grief Educator, End of Life Planning & Care, Marriage Celebrant
To learn more about Jo visit Big Love Ceremonies