I have been at this work for a couple of years and still can't seem to answer the question "What is a death doula?" succintly. Some common replies are "I am a non medical person that provides physical, emotional and spiritual support to dying people and their caregivers." Or "I am a different doula with every client I have." While both of these are true I don't think they do much to answer the "What is a death doula?" question.
I think it makes more sense to tell stories about my experience as a death doula. It's not succinct so it had better be an elevator in the Burj Khalifa in Dubai.
Frequently I get called from the hospital. I get the back story and find out why they called. Most people say something to the effect of "I don't know why I am calling I just didn't know what else to do." What they need me to be is an emotional lighthouse. Anticipatory grief can create chaos in waiting rooms. I see my role as being the calm presence showing them the way to solid ground. I remind them that they can do this and then offer them some tools.
If the person is very near death and in a sleep coma, I usually help them with ideas to change the room to a more calm and peaceful environment and offer some sort of blessing. This is a time when people appreciate having something appropriate for the moment put in their hands. I draw from many spiritual traditions and encourage them to make one of their own as well. One of my favorites comes from a book (and I'm sorry I can't remember the title-the death books are about 5 deep on my bedside table at all times). It was written by the friends of a man who was dying of AIDS:
"Thank you for the life of our dear friend. Thank you for the miracles that make him who he is. Thank you for the amazing life he has lived and for all he has been. Thank you that he will now journey to become a bright star. Help him as he sheds his earth garment and his pain and his sickness. Help him to journey freely unencumbered by these things. May the journey be blessed by the knowledge that he is loved and while he will be missed, we will always be able to see him in the stars. We put his life, being and transition into your hands the mighty god of the stars and all beings."
These prayers are helpful because when we find ourselves at the bedside of a dying loved one we can be at a loss as to what to say and do. I always encourage them to let everyone have some alone time with the person. Hearing is the last sense to leave so even though they are in a sleep coma you can still talk to them. This is helpful even in the deaths where there is conflict. I encourage people to say what is in their heart. I prep them to be able to speak their truth in a calm and measured way. It is equally important that after they have had their 5-15 minutes they need to let the person die in peace.
Sometimes people call and they are in the midst of making difficult medical decisions. Often their beloved has just had surgery and they have been given competing advice from the multiple doctors involved. One doctor says something like "There is nothing more to be done." The other says, "We can do this, that and the other thing." Understandably there is confusion. This is an instance where I can create the space for them to find their own wisdom. I ask "What matters to your beloved?" Often they say "They want to be cured." I ask if the doctors are telling them that this is possible? They say "They are really positive and hopeful. We are grateful for that." I have learned to be leery of 'postive and hopeful' in my line of work. I ask them if they trust the doctor. Frequently they say "I haven't known this doctor long enough to know." Or "There have been so many procedures I don't know who the doctor is." I venture that if they couldn't be cured what would they want? They usually say the person would rather be at home. 8 out of 10 people want to die at home.
The next step is helping them advocate for themselves so they can get the information from the doctors that they need to make these decisions. To help them get information I usually have them ask for a Care Conference or a Palliative Care consult.
At some point they enter hospice and are looking for support to make this experience their own. Topics people ask about include how the body shuts down and the kinds of things they can expect. How to manage their own anxiety around death and dying. How to balance the needs of the extended network of family and friends. Sometimes how to prepare a child for the death of a parent and how to invite them to participate in a way that feels comfortable for them.
I can do most of this work in person, over the phone/text messages. It all depends on the support system and how much experience and confidence they have around death and dying. And remember: it doesn't have to be a last minute call when you and your family are in distress. We can talk through these scenarious before the time comes so that your last moments together are calm and as close to what your beloved wanted as possible.
Are we on the 163rd floor yet?
I am a trained end-of-life doula. I provide guidance and support for individuals and families during the end-of-life process.