Death Doulas

Like birth doulas, end-of-life doulas help families through a major transition

By Deborah Jeanne Sergeant

 

No one alive today has died before. And most people have not experienced sitting with a loved one whose death is anticipated. Even those who have could still use support.

That’s where death doulas come in.

Also known as end-of-life doulas, these professionals make dying easier on the patient and family by offering a comforting, non-medical presence through practical, emotional and spiritual guidance during death.

Lauren Sample, an end-of-life doula, operates In Due Time in Rochester.

“I was not someone who you’d expect to be in end-of-life work and would’ve done anything to keep death as far away as possible,” Sample said.

That all began to change when she birthed a daughter not expected to live. She defied the odds and survived for 15 years. Her close calls during this time helped Sample become more at ease with death. She also learned about end-of-life work and became interested in becoming a death doula. After a few years, Sample received training and became certified in 2019.

In addition to support, death doulas provide education about what’s happening and what to expect as death draws closer and what to expect after. Most help families know what to do immediately after, like final affairs.

“We are available to sit at the bedside as death draws nigh to give them a break or sit with the family as things change. We can help them learn comfort measures,” Sample said. “We might help decorate the space. We might talk with the dying person ahead about what they’d like the end of their life to look like and what they’d like around them.”

That might include who the person wants or doesn’t want near the bed.

The end-of-life doula may also serve as a liaison between the in-town and out-of-town family members and suggest ways that they can offer support from afar.

The services are not covered by insurance as they’re not medical. However, some hospitals and hospices have end-of-life doulas as part of their staff.

Sample charges a sliding scale fee to keep it affordable for people with lower income. End-of-life doulas typically charge between $50 and $100 per hour.

Karen Bennett, who offers end-of-life support in Rochester as The Dying Well Doula, stumbled upon the concept while visiting Nepal 20 years ago. She began volunteering at a hospice and those experiences taught her how to serve as a caregiver to her husband when he was dying in 2021.

“There’s a calling for it,” Bennett said.

There’s also big demand, as the aging baby boomers don’t often live near their adult children. Even if they did, most households are dual income and cannot take off months from work with unpaid leave.

“We work alongside the hospice team assigned to the patient,” Bennett said. “Our services are mainly there to comfort and support the dying and family members around them. It can be very calming and supportive in what can be a chaotic and frightening time.”

Some also run errands and perform household chores, help with planning final arrangements and suggest a legacy project to create a comforting memory.

Bennett suggests enlisting an end-of-life doula once the patient is in hospice care.

“It’s just as important as will and power of attorney,” she said. “It’s crucial for people to know who you want around you and where you want to be so everyone’s on board with it.”

Many people believe that once a patient is on hospice care, they receive 24/7 care. However, Bennett said that most of the care falls to family members with only an aide or visiting nurse coming for a couple of hours daily. Death doulas can offer more relief and support.

“I think it’s an important role that everyone can benefit from,” Bennett said. “It’s such an emotional time for a lot of people. Having that calming, supportive presence in the home can relieve so much stress and chaos.”