Why We Need Death Doulas
by Elena Musella
I am a certified Death Doula or End-of-Life Midwife. A Death Doula companions the dying and those going through transformational loss. We provide holistic emotional and spiritual support for patients and their families or loved ones. Often times we are teachers, life coaches and managers of chaos. If there is a disconnect, we can become the advocate and liaison between the various healthcare systems or family members and the patient. We encourage and facilitate creating environments that remind people that while death is on the horizon, we can make the most of living today. We reach beyond caring for the basic needs and extend into creating cherished moments.
A Doula is an asset whose greatest gift is time. That time translates into benefits for patients and families in the form of increased understanding of the dying process, easing of fears of the unknown, companionship, direction on how to handle all the new things coming at them and planning for a good death and what’s left after. That time regenerates into family members providing care with peace and dignity, slowing down to share moments, processing the trauma they are experiencing with their loss, reflecting on good times, and being left with warm memories from the hardest times in life.
Many patients and families have been scrambling for years, chasing after treatments just to get slammed with a terminal diagnosis. The mental adjustment from pushing for life-saving help to easing into comfort care for death is difficult to do alone. Normalizing dying and the new type of palliative support they will be receiving takes time, repetition and ongoing emotional support. Sometimes that takes someone walking the journey with you, helping you to process and organize all the sudden changes. As human beings, we tend to compartmentalize everything, put all information in a proper place in our brains where we can then process and understand it. But few people have taken the time to previously process death and know nothing about palliative care or hospice. They have no compartment to put this information into where they can process it, so we have to create compartments for them. With hospice, we do a good job of breaking down the dying process into different areas of care. Suddenly, someone can say, “Oh yes, so there is a chaplain that is going to help me with the spiritual side, or a nurse for my medical needs.” But it can be an overload. Death is a traumatic event. Families can feel like “When is time going to stop so I can just take a breath?” The Doula comes in to slow things down and organize the new way of life.
A Doula can be a teacher. There are families that would benefit from more experiential education. An opportunity to shadow what the different disciplines of hospice do so that they can practice doing it when they are alone. Providing for the daily needs of a hospice patient physically is a whole new concept for some people. Maybe they want to learn to bathe their loved ones, or even know where to start when wanting to be attentive. A Doula may know the essentials of all these things to help review them with the care partner when hospice leaves.
A study showed that 80% of people want to die at home but only 20% of people actually do. This creates a terrible burden and puts a strain on the healthcare system with 10,000 baby boomers turning 65 every day. Sometimes, a couple hours a week that a Doula can step in for a respite visit is the difference between needing to move a patient to a facility and allowing them to stay at home. Sometimes, a couple hours a week that a Doula can step in for a respite visit is the difference between a care partner’s sanity and emotional breakdown.
So, who is a good candidate for a Death Doula? For patients, a Doula can be most effective if they are alert and oriented, would like emotional support companionship, are interested in planning for having what they define as a “good death,” or are interested in life review. Care partners that could benefit from Doulas are people who feel overwhelmed, could use some help managing their affairs, need more support in a specific aspect of the dying or planning process, seek additional emotional support, those interested in their loved ones having the best final days possible, and those wanting to do legacy work and relationship processing. A Doula can be beneficial to anyone but are most helpful to those who could use additional support in some area of the dying process.
I had a patient named Betty that was a good candidate for a Doula. When she came onto service she had anxiety and wanted additional emotional support and companionship. Her family lived far away but she loved being around people. She was still interested in participating in things and could use the physical and creative assistance to participate in life to her fullest capacity. She wanted someone to take the time to review her life with her and have a sense of completeness and purpose. Vigil planning and sitting could have been an opportunity for additional Doula support during her final weeks where she was less responsive, and I’ll explain what that means.
Often, when a Doula is hired, we can create and implement a vigil plan. We want patients to define and receive what a “good death” looks like to them. It is our job to create that environment and get everyone on board to help follow through with the plan. While Betty was alert, I could have sat down with her to define what dying well would look like. We would choose and arrange items in her room to make it feel like a peaceful and sacred space. That would include family pictures and memorabilia, using lamp light instead of florescent bulbs, playing calming music, having an essential oil diffuser and similar calming aspects. We could put rituals in place such as putting a note on the door instructing people to use quieter voices, take off their shoes or even do something like write a memory on a piece of paper and share it with her. We would alert her family and staff as to her wishes and would have everyone work together to create an environment that made leaving this world easier and more peaceful.
