‘Death Doula’, while I love alliteration, has the feel of ‘Angel of Death’…and that couldn’t be further from the truth.
While the end of life doula profession is being modeled after birth doulas, that is where the similarity ends. A birth doula begins her work at the birth. There would be an introductory meeting, but her work really begins at the birth and ends after postpartum follow up. So the title ‘birth doula’ is fitting.
Ideally, for me as an end of life doula (EOLD) my work begins well before death, hopefully even years, by assisting individuals in identifying the key components of what they feel would be a ‘good death’ for them, so that they can make healthcare and lifestyle decisions accordingly along the way.
This foundation plays an important role in the decisions regarding treatment when a life-limiting diagnosis or prognosis presents. When identified, all decisions regarding treatment can be weighed as either something that supports these or does not support these.
For instance, if a key component for someone is being able to spend quality time doing ‘last activities’ with family then continuing to pursue aggressive treatment past a certain point, when there is only a small chance of survival would not likely allow for the stamina needed to participate in a lot of ‘last activities’.
However, if a key component for someone is to “go down swinging”, then pursuing aggressive treatment until the last moment might be the right course of action for them.
But you can’t know these things if you aren’t examining the topic ahead of time.
No one wants to die. No one wants to admit someone they love is going to die. But this is a chapter in everyone’s life and our current model often has the author giving up their rights to pen their own chapter. We only get one chance to do this. There are no do overs and no rewind buttons.
I recall one individual who was diagnosed with stage 4 lung cancer ending up with a death he never dreamed for himself. I was not the doula, but merely a bystander in this situation and never felt so helpless. After the first chemotherapy treatment he began to decline very rapidly. More so with each treatment he sustained. He was leaving behind two young adult daughters that needed quality time with him, but his energy was being depleted by the effects of the chemo.
His end of life care was being driven by his significant other because he had not had end of life conversations earlier, had not written down his wishes, had not identified his key components of a good death and he was less and less able to make his wishes clear as his brain began to swell.
Having end of life discussions is not morbid; is not tempting fate; is not bad juju; is not inviting death; is not jinxing anything. It is a way to have control over a time in your life where you may not feel in control.
As an end of life doula my job is not just about the moments of imminent death, it is about maximizing quality of life until transition. It is about giving control back to someone who may have handed it over to someone else, be they the medical profession or their family. It is about protecting their interests and preserving what is valuable to them.
It is about facilitating early conversations, encouraging someone to apply their lifelong decision making process to end of life situations, documenting informed choices, encouraging questions, planning last activities, assisting in legacy projects, providing comfort, providing an objective listening ear, a shoulder to cry on, a safe space to fall apart and facilitating movement from a place of scared to that of sacred.
It is about reminding people of their power when they feel most powerless.
This is about more than ‘death’. It is about more than the process of dying. It is about living until and through the transition. It is about exploring beliefs about whether or not ‘life’ goes on after death. It is about preparing rituals that ease spiritual discomfort of the dying and the anticipatory grief of their loved ones.
This is end of life work, not ‘death’ work. It is so so so much more than just death.
It is a most sacred part of life.