“Death Doulas” on the Rise in Hospice Care

For years, families have been using birth coaches called doulas to help make the childbirth experience more comfortable and supportive for mothers. Now, both volunteer and professionally trained doulas are offering guidance during the end-of-life period as well.

Hope Hospice in Florida is one recent example of a provider taking advantage of specialized doula training. “Much in the same way a doula helps a new mother navigate childbirth, end-of-life doulas help enhance Hope’s holistic, personalized approach by facilitating a gentle, tranquil and meaningful passing, whether in a hospice house, the hospital or at home,” Samira Beckwith, president and CEO of Hope Healthcare, told the Fort Myers Florida Weekly.

Another great example is Hudson Valley Hospice in New York, which offers an end-of-life doula program as  “an enhancement to the care and support that is provided to patients and their loved ones.”

A so-called “death doula” provides a variety of non-medical services.

At times, a doula may be brought in by a family or hospice provider to help carry out a terminal person’s plans for how or where he or she wants to die. Even before that point, a doula might be brought into a situation to help an individual establish a lasting legacy by compiling photo albums, putting together scrapbooks or organizing personal treasures for passing on from one generation to the next.

A death doula might also help a person repair a damaged relationship.

“It’s never too late to deal with unfinished business or to heal – at least in part – a fractured or broken relationship,” Henry Fersko-Weiss, executive director of the International End of Life Doula Association (INELDA), recently wrote. “Even when time is very limited, and a person’s energy is waning, it’s not too late. As doulas, we must always keep this in mind and help those we serve be aware of this as well.”

Often, though, the role of a death doula is simply comforting a person – holding a hand or reading a book – as they go through the dying process.

New Jersey-based, not-for-profit INELDA is one of the most prominent organizations currently providing end-of-life doula training. Since launching more than three years ago, INELDA has helped train thousands of hospice nurses, home care clinicians, chaplains and interested non-professionals in its specialized approach to end-of-life care.

Other groups with end-of-life doula programs include Quality of Life Care, Doulagivers and the Lifespan Doula Association.

Behind the rise of ‘death doulas’

The U.S. media and international newsrooms alike have shined a spotlight on end-of-life doulas in recent months, with new articles coming out weekly. There are several drivers behind the trend, but the biggest is the wave of rapidly aging baby boomers, a generation that is known for bucking societal norms and advocating for social change.

With the oldest baby boomers approaching their mid-seventies, they are now thinking more about end-of-life care and looking for ways to improve the overall experience. Baby boomers have also embraced the aging-in-place mentality, which also fits into the value that end-of-life doulas can provide.

Naturally, services focused on the dying process have evolved to meet baby boomer demand.

The rise of end-of-life doulas is also being driven by hospice demand.

Traditionally, hospice providers have run on a not-for-profit model. For-profit hospices made up about one-third of the 2,255 hospice agencies in 2000, according to the Centers for Medicare & Medicaid Services (CMS). By 2016, they made up about two-thirds of all agencies.

For-profit hospice agencies may see enlisting doulas as a way to step up the services they provide that, in turn, could make them more appealing as a provider of choice for individuals and health system partners alike.

While some hospices have moved to hire outside doulas to reinforce their regular staff, others have implemented formal in-house programs, where organizations such as INELDA train caregivers on doula strategy and methods. INELDA has put about 700 individuals (hospice nurses, clinicians, chaplains and others) through its three-day doula course in 2017, according to the organization.

Are doula services covered?

 End-of-life doulas can be paid workers or volunteers, in-house resources or outside experts.

While these services are not currently covered by Medicare, it’s worth keeping an eye on potential payer offerings in the future. Fersko-Weiss of INDELDA predicts that similar to some insurance companies starting to offer partial reimbursements for birth doulas, there could eventually be some reimbursement for end-of-life doulas.

Regardless of who’s providing the service, doula options within the hospice community are growing and gaining industry support. Just recently, the National Hospice and Palliative Care Organization announced that it was forming an end-of-life doula council to help provide information and resources to its members, affiliated organizations and the public regarding the role of end-of-life doulas.

As hospices continue to look for ways to differentiate their services and provide individualized care, end-of-life doulas are proving to be a valuable way to augment traditional hospice care with non-medical, caring services that can ease the final days for patients and support their families.