The Role of the Death Doula in End-of-Life Care

People who are approaching the end of their lives are increasingly relying on home health care agencies to assist them in living in their own homes instead of going to assisted living centers. Maintaining this level of independence in your own home requires care and support from others. Family members might not always be available to provide consistent around the clock care and support for a loved one, let alone effective medical care.

As a result, home care agencies began filling the role of providing in-home medical care for seniors. As the home health care industry has grown, so have the gaps in coverage. These gaps in coverage are starting to be filled by Death Doulas. Death Doulas aka End of Life Doulas, occupy a niche in the home health care field. With an all-encompassing set of responsibilities, doulas main focus is to help gently comfort the individual who is in end of life care. While Doulas primarily provide guidance and support, this role extends to the secondary task that makes the funeral process less troublesome for the loved one and surrounding family members.

This can include tasks such as:

Defining the Death Doula

We've seen a similar concept in midwifery, where birth doulas have long been providing emotional and practical support for women in the process of childbirth. This has been shown to have positive outcomes for mothers and their babies. Like birth doulas, death doulas' roles and functions are non-medical; these can include advocating, supporting, guiding, and providing emotional support. This support is not limited to just the person dying. Support to surrounding family members and friends is vital in a multi-faceted holistic approach.

death doula
End of Life Doulas Training

The health care industry and other regulatory organizations still lack integration with hospice and the end of life care industries. As such, the death doula industry is still in the infancy of regulation in the US and Canada.

In the meantime, several organizations have stepped up to offer end of life doula training including:

It will be interesting to see what the future of the death doula industry holds. As it currently stands now, there is no unifying governing body that is setting a standard for the training required to become a certified death doula. While there are several large death doula organizations with extensive curriculums, the doula industry largely remains unrecognized and overlooked by most sectors of the healthcare industry.

Why People Choose Doulas

There are so many people who are facing the end stages of life alone. The real stress is often that no one wants to talk to them about death. The big elephant in the room. In addition to individuals choosing to bring in a death doula for their own needs, the surrounding family often want a death doula to help in tasks like putting together legacy items, like memory books, videotapes, audio recordings, and collages.

Many people want a death doula by their side because doulas can help in some many areas of life that often get neglected. 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.

More and More People Are Choosing Home Funerals

The death doula trend reflects less constrained attitudes toward death and the process of dying. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23% to 27%Deaths in nursing homes remained the same at about 20%.

The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes more grounded in the home, end-of-life doulas may become more common. For the health care system from a financial standpoint, in-home assistance is seen as net positive. It can reduce overcrowded hospitals, reduce administrative overhead, and often provide a higher standard of living for home health care patients. When people are honest with where they would prefer to spend living their golden years, most prefer to pass away on their own terms at their own home.


How Death Doula’s Are Changing Healthcare

While some hospices have moved to hire outside doulas, others have implemented formal in-house programs, where organizations such as INELDA train caregivers on doula strategy and methods. While these services are not currently covered by Medicare, it is 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 potentially be 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 in healthcare.

As hospices continue to look for ways to differentiate their services and provide more individualized and holistic 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.

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