Death is something all people experience, yet most are unprepared for it emotionally, mentally, and practically. Hospice care professionals help guide conversations between terminally ill patients and their families — and now a growing profession of end-of-life doulas are helping to meet that need as well.
“Dying isn’t a medical event. It is a human one,” states the International End-of-Life Doula Association (INELDA) website. Normalizing the natural dying process helps patients and families reduce anxiety and navigate to a peace-filled end. Let’s explore how hospice and end-of-life doulas can serve your loved one with a life-limiting illness, plus offer valuable caregiver support to the whole family.
Defining End-of-Life Doula
End-of-life doulas are non-medical, trained support individuals who provide companionship, comfort, and guidance to those facing a terminal illness or death (INELDA). Other alternate names include death doula, death midwife, death coach, and end-of-life coach — all with the same goal of providing compassionate deathcare.
“Doulas normalize deathcare by creating spaces to hold conversations leading to increased communication and increased spiritual and emotional well being. When individuals plan for death, they have autonomy over their decisions and are able to clearly define their end-of-life wishes with family and loved ones.” -International End-of-Life Doula Association
These doulas don’t hasten or hurry death, yet they provide another layer of care that complements hospitals, senior care centers, and hospices. Along with end-of-life doulas, hospice providers like Heart to Heart Hospice encourage conversations about dying to help individuals face an end that’s full of comfort, surrounded by whom and what they love.
Patients qualify for hospice coverage when their doctor gives them a prognosis of six months or less life expectancy (which can be renewed if they live longer). With costs covered by Medicare, the VA, or private insurance, hospice provides non-curative medical care, such as comfort care with pain and symptom management, as well as emotional, spiritual, and caregiver support.
The Medicare Hospice Benefit was designed to help terminally ill patients die in the place they call home, cared for by family, friends or other caregivers. Whereas the hospice benefit covers many things – medications for comfort, medical equipment and supplies to help manage symptoms and education guidance for caregivers – some families may desire to hire private death midwives or doulas for extra support, paying out of pocket for their services. Plus, Heart to Heart Hospice is working to incorporate death doula training for staff at several locations.
What End-of-Life Doulas Do
Doulas assist patients and families in a variety of ways, from guiding necessary conversations to physical comfort to caregiver relief. End-of-life coaches can:
- Offer the family time to talk openly about dying without judgment, including advance care directives, end-of-life wishes (pain management support, funeral wishes, etc.), and the space to process grief and emotions.
- Help with legacy projects to honor the patient.
- Create a comfortable physical space for the patient.
- Acknowledge and celebrate desired traditions, rituals, or spiritual practices.
- Provide comfort care via massage or guided visualization.
- Educate in-home caregivers on physical contact with the patient.
- Sit bedside and ease caregiver burdens via practical help or presence.
- Provide respite for caregivers.
- Educate the patient and caregivers on signs and symptoms of dying.
- Coordinate care with the hospice provider or other medical team members.
- Can make referrals to other professionals or community resources.
Some limitations for end-of-life doulas exist, including:
- Not offering medical advice or clinical tasks, such as symptom monitoring or giving medications.
- Not imposing personal beliefs or values on the client.
- Not undermining confidence in caregivers, but offering good listening skills and encouraging patient-to-caregiver conversations.
- Not taking on the role of professionals, such as hospice nurses, chaplains, aides, etc.
- While they can be present during the dying process at the patient’s or family’s request, they can’t facilitate medical needs. Hospice visits increase during the active dying process.
Removing the Stigma
A related trend includes the growth of Death Cafes, an informal social gathering where participants talk freely about death in a non-judgemental setting. These events began in 2011 in East London and have spread to more than 15,000 gatherings across nearly every continent.
Quite the opposite of morbid, the purpose of Death Cafes is “to increase awareness of death with a view to helping people make the most of their (finite) lives.” Normalizing this topic can help remove the fear and stigma of such conversations when death inevitably impacts your family. See the organization’s guide for hosting a Death Cafe or find one near you.
Both hospice professionals and end-of-life doulas offer dignity by creating a safe environment for families to talk, ask questions, and accept support during such a tender time. While grief is inevitable, accepting help spreads out the burden and facilitates peace. Contact Heart to Heart Hospice if you have hospice needs or questions.