The Dawn of the Death Doula

Discover what this new non-medical role is and how it may affect nurses in the future.

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The Dawn of the Death Doula

Backstory

When the Western counter-culture of the 1960s sought to radically protest dominant societal paradigms on so many fronts, the over-medicalization of the birthing process was included. Home births attended by "direct-entry" or "lay" midwives saw a resurgence that continues today. From the home birth movement, the non-medical birth doula role evolved concurrently and is now a common part of the hospital birthing team1.

As birth and death care are often seen as having commonalities, the high emphasis on death as being a medical event was challenged in the 60s as well. It was then that the heart of hospice was born. Dame Cicely Saunders brought the formalized model of hospice care to the U.S. in 19632. Hospice home care and in-patient units continue to remind us that the death process can be a normal and comfortable process when attended by compassionate, well-trained medical providers.

Over time, an astute birth doula put two and two together. When Phyllis Farley attended an End-of-Life seminar at a Jewish center in NYC in 1998, it led to the creation of a death doula services program in 2001 at a New York City hospital and, soon after, a death doula training program3. By 2010, this bedside death supporter role began to flourish via hybrid and internet training courses, teaching the same four pillars of support as birth doulas: emotional, physical, advocacy, and informational.

History in the Making

In 2018, the National Hospice and Palliative Care Organization (NHPCO) embraced the End-of-Life doula (EOLD) as a legitimate, non-skilled care role in hospice care with the advent of their EOLD advisory council4. This continues to pave the way for standardized certification for death doulas. Certified death doulas are seen by some as the perfect fit to assist in providing death with dignity when medical interventions are no longer appropriate. 

The quasi-professional role is rapidly becoming mainstream in the wake of increased death awareness brought upon us all by the devastation of the pandemic. And now, death doulas seem to be quite a trendy topic and newsworthy as well, according to the BBC, Huff Post, the New York Times, and Time magazine5.

Nurses and Death Doulas May Meet Soon

The continuous bedside support provided by birth doulas statistically improves birthing outcomes6. While there is a paucity of studies on death outcomes as this formalized end-of-life role is new, it stands to reason that the amazing positive statistical conclusions seen with a birth doula present will translate to the positive addition of a death doula when patients and their loved ones are facing the end of life in hospitals. 

During this year's Oncology Nursing Society Congress, Lorraine Holtsland, Ph.D., RN, CHPN, presented a poster supporting the notion of adding certified death doulas to the medical team via hospital hiring to not only support the nursing team at the bedside but to augment the dignity of the dying and provide services that can bring equity to care delivery7.

What Does the Future Hold?

It remains to be seen how the EOLD role will evolve. The National End of Life Doula Alliance, in concert with the NHPCO, is working to clearly define the role and set core competencies8. The question of if and how the death doula will be integrated into the hospital care management team is still unanswered.

Hospice nurses are beginning to see these privately-paid support persons in patient homes right now. Hospice organizations are inconsistently embracing this addition to their patient care teams. Death doulas and their advocates argue that this role holds the potential to improve end-of-life care by empowering patients and families and possibly reduce the burden of care in health care systems. Time will tell.

References/Resources

1The Historical Significance of Doulas and Midwives

2NHPCO: History of Hospice

3UTNE: Phyllis Farley

4NHPCO End-of-Life Doula Council

5Death Doulas Used to Be Rare. The COVID-19 Pandemic Changed That

6Continuous support for women during childbirth

7Incorporating a Death Doula into the Oncology Care Team

8NEDA Mission, Vision, and Values

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NurseDeltaInk

About NurseDeltaInk, RN

Delta Waters RN spent her 20-year career focusing on geriatric and hospice specialties. In addition to years in hospice home care and in-patient hospice, she worked in the hospital system on the Oncology and Acute Cardiac floors as well as in home health, long-term care and LTC rehab.

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Specializes in New Critical care NP, Critical care, Med-surg, LTC.

Very interesting article. It will be interesting to see whether this becomes a mainstream position like the birth doulas have taken. I can see how this valuable resource would help families already dealing with a difficult situation by increasing their access to knowledgeable people that are outside of their hospice care system. Or whether hospice organization will include them. 

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Specializes in Freelance Health Care Writer|End-of-Life Educator.

yes! It seems hospices are having one of two responses: 

1. Great! patients/families can use all the help we can collectively provide them.

2. Nope! You are in OUR territory.

Getting the word out for hospice providers is paramount right now. The main thing death doulas provide is the gift of TIME as well as reinforcement of hospice education when they are not in the home.

As far as hospital placement (whether it's hospital hiring or private pay via the family), it is pretty exciting to think that a death doula could provide extra support for nursing staff. For example, observing increased agitation in the patient and alerting the nurse in a timely fashion ...being an extra pair of eyes so to speak. Or educating and assuring family at the bedside about what they are seeing as being a normal part of the dying process thus, helping to support everyone emotionally and spiritually. Nurses would do this more if we had the time, right?!

Thanks for the read and the comment!  

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Specializes in Med/surg, oncology, telemetry staff RN.

Great educational read, Delta. The important job of a death doula is so needed in our homes, when we are thankfully able to keep and care for loved ones during their death. Families need support!! They can be willing, but understandably hesitant and fearful of the endeavor. So many emotions surrounding families and end of life. The death doula offers a much sought-after support, that most people don't know is available.  

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Specializes in Med-Surg.

It's a great idea.  But I can't get past "As birth and death care are often seen as having commonalities".   Who knew?

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Specializes in Freelance Health Care Writer|End-of-Life Educator.
On 11/11/2022 at 3:57 PM, Tweety said:

It's a great idea.  But I can't get past "As birth and death care are often seen as having commonalities".   Who knew?

Thank you for the read and comment. Let me take a moment to address your inquiry as I did just drop that in my article without explanation.

First, the medical specialties of birthing and dying both require the skillful application of pain management. Also, other comfort measures are appropriate here as well such as management of n/v,  positioning, and intake monitoring.  Nursing also seeks to normalize the process for all involved, educating them about what they are going through or seeing. These are just a few commonalities off the top of my head. 

For some folx, birthing and dying goals encompass the goal of making the process as non-medical as possible for both the person and those with them at the bedside. 

And finally, on a more esoteric, personal note, birth and death can be seen as poignant, spiritual transition times, a midwifing of the soul either way. 

Hope this clarifies my statement further for you.

Be well. 

 

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Specializes in Med-Surg.

Thanks for taking the time to answer.   I guess not being in those specialities I didn't know they were "often" thought as having commonalities.  But really you could describe any two areas of nursing that way.  

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