Is There Room on the Hospice Team for End-of-Life Doulas?
Northern California hospice nurse and death educator Gabby Jimenez recently made the case for adding end-of-life doulas to the hospice team, a role that in her view “could tie everything together in a way that would make death and dying a little more peaceful for everyone involved.”
As a hospice nurse as well as a death doula (also known as an end-of-life doula), Jimenez is uniquely positioned to understand the differences between the two roles, which are sometimes misunderstood, but each aimed at different aspects of end-of-life care.
Jimenez also hosts a popular Facebook page and is a Conscious Dying teacher, blogger and author.
When she’s working as a hospice nurse, Jimenez is focused on the patient’s palliative care, symptoms and illness, “My role as a nurse is to assess their symptoms, to see if there is any need for other hospice team roles (like a chaplain or social worker) and I always communicate with the doctor about medications. I would not do this as a doula. In fact, when working with private clients in my role as an end-of-life doula, I refer my clients back to their doctor for any medical questions.”
The role of the death doula is the non-medical, emotional support to the person dying and their family by being “present” for their death. Jimenez says, “In many ways, we help to choreograph their last moments in such a way that it leaves beautiful memories for everyone who is saying goodbye.” And unlike her role as a hospice nurse, as a doula she is able to continue to personally support the families beyond a loved one’s death.
Jimenez explains that an end-of-life doula cannot give medical care or medicine and does not interfere with the hospice team’s work. She says, “They are trained to respect the roles of others, knowing their own boundaries at all times, while making sure the person can die more peacefully and that their family is supported.”
Jimenez believes many patients miss out on hospice’s full palliative benefits by waiting too long to begin (though Medicare covers hospice care if a doctor says you have six months or less to live, studies say about half of the recipients receive hospice care for less than 30 days, and a fourth of patients receive seven days or less).
“Sometimes I’ll be able to see them before they get really sick and we have great conversations. Sometimes, I see them hours or minutes before they take their last breath.”
It’s worth noting that a doula is an extra expense for families since that cost is not covered by Medicare or typically by insurance, so it could be out of reach for some.
Jimenez thinks one solution to make doulas more accessible would be to train volunteers.
Whether working on a hospice team, serving as a volunteer or death doula, working as a caregiver at home or just being a caring human, Jimenez believes in — and teaches — that these three skills are essential:
- Being present
- Holding space
“You’ve got to slow down and take pause and understand what it must be like to die or to watch someone you love die and what that means,” she says.