Dying is not an act you can easily undertake yourself. If being born amid those who will love you is the first best hope of life, dying within a beloved community is the last.  –unattributed

For some, the term ‘doula’ brings to mind home and alternative birthing scenes.  The term has been borrowed from the birthing movement to add a layer of support to the deathing movement.  You may begin to hear the term ‘end of life doula’ from your patients and their families, as the movement gains traction.   Some of the names you may hear the death doulas called are: end-of-life doula, dying guide, death coach, death-walker, mourning doula, death care or end of life specialist, community death care advocate, death midwife, soul midwife, transition doula, thana-doula, eldercare doula, palliative care doula. 

While I was completing my chaplain residency at St Anthony Hospital in Lakewood in 2016-2017, I was invited to also engage in the training to become an end of life doula.  I have since finished 2 national trainings and am certified as a ‘Sacred Passage Doula’ through the Conscious Dying Institute in Boulder.  I have found the perspectives, tools and preparation to be an excellent adjunct to my chaplain training, and then to the palliative care fellowship completed here at UCH in 2020.  My hope is to discern how doulas can be of more service within the palliative care domain.

Death doulas, as birth doulas, do not take the place of medical treatment, but rather are providing non-medicalized support and care for the patient and family.  Most doulas prefer to work with patients who are already in hospice care, or open to being admitted when eligible. End of life doulas do the following, but most are open to other avenues of support that are needed by the patients and families.

• Involvement with patient and family as soon as invitation or referral, after diagnosis of serious illness. Some doulas are looking at an 18-24 month trajectory. Some doulas prefer just to work at end of life (3 months or less).
• Intensive work with life review and planning for end of life that includes the domains of human experience, upstream from frequent hospitalizations and the crunch of end of life.Lots of work with helping families talk about care planning and facilitating finalizing needed documents.
• Planning that helps patient and family relax and spend their emotional and spiritual energy where they see fit, rather than figuring out details that could have been processed/completed earlier.
• Legacy work, including spiritual and ethical wills, specifically designed projects coming from dialogue with patients and families over time.
• Walk beside patients choosing MAID and those who wish to utilize psychedelics for death anxiety.

  The additional role I can see a palliative care doula working within:

• May be introduced to patient/family in a clinic or primary care setting, followed with periodic home or clinic visits, continue outreach if patient is in facility; help while patient is inpatient, continue to follow through disposition, etc.
• Employed by a system (could be hospice/palliative care or hospital; possibly faith communities may utilize palliative care doulas)
• Helping to provide continuity across settings that may lead to patient’s wishes being verbalized, witnessed and honored more consistently.

It is our hope that those warm, intensive images of birth doulas will begin to filter into the cultural ethos for end of life, for deathing doulas.

If you want more information or to refer a patient to a death doula, I am happy to be a clearinghouse for those requests.  My email is beth.patterson@uchealth.org 

Further resources:

NEDA National End of Life Doula Alliance  NATIONAL END-OF-LIFE DOULA ALLIANCE (NEDA) - Home (nedalliance.org)

The Peaceful Presence Project (my doula group in Central Oregon; I am the ‘Colorado arm’)  Peaceful Presence (thepeacefulpresenceproject.org)

End of Life Doulas intend to help communities live well, age well and die well by reimagining the way we talk about, plan for and experience the last stages of life.