I do a lot of educational presentations around the Triangle, sharing with people the basics of what an end-of-life doula does and scenarios in which they are useful (listen to this local radio spot for more). At the end of these sessions, without fail, I get the same question: how do I know when it's time to call a death doula? When is it too early, and when is it too late?
The answer to that depends on what you want to do, and my follow-up to that answer is that it's always better to be too early than too late. For example, a family asked me to help a matriarch who was diagnosed with a fast-moving disease. While we had time to think out some of the things she wanted, there wasn't time to do it all. She felt weaker and weaker, slept a lot, and started to lose her motivation to get her list done (this is part of the natural dying process, as we detach from this world physically, mentally, emotionally, and spiritually). My point is that you can only do what you will have the energy to do. It is not about doing the list before dying, it's about doing the list before real decline begins. And that is a hard one to predict--so start earlier. So, what is "earlier"?
"The answer to that depends on what you want to do, and my follow-up to that answer is that it's always better to be too early than too late."
The general (and original) guidance is to engage a doula once someone qualifies for hospice, which is an estimate of six months to live. HOWEVER, this guidance is changing, primarily because we are seeing people enter hospice way too late (and there are several reasons for that). The death care community is now saying engagement should ideally start a year out, or, when one enters palliative care (depending on the condition). Starting earlier avoids the situations I described above, allows doulas to form trust-based relationships with other caregivers, and gives the dying person sufficient time to think, absorb, plan, and do.
"It is not about doing the list before dying, it's about doing the list before real decline begins."
Is there such a thing as too late? I know a doula who got a frantic voice message one night from a man who said his grandfather was dying at home and he needed guidance--he didn't know what to do or how he could make the situation more peaceful for his grandfather. When the doula called him back the next morning, the grandfather had passed. This situation could have been a result of a few things--only a recent awareness about doula's existence, or resistance to the idea until one realizes they could actually use a doula, or resistance from the dying person, or the advent of an unpredictable turn in the dying process that scares people. That is what I would call "too late" -- when the patient is actively dying and the family has reached a crisis state, with little time left to do the work that doulas do. These scenarios do happen and they are heartbreaking for us as doulas, because we see how it "didn't have to be this way." (And this is why I am so committed to advocacy.)
"That is what I would call 'too late' -- when the patient is actively dying and the family has reached a crisis state, with little time left to do the work that doulas do."
Is there such a thing as too early? No, not really. I frequently get requests from people who are elderly, but not sick with anything, and want to get their paperwork together. They feel disorganized or fear they are missing an important element. We sit down together and take inventory, ask some questions that could reveal gaps, and come up with a "when I die" action plan. It is NEVER too early to do that. It is never too early to write your obituary (unless you trust the survivors to truly reflect who you were). We do not know when we are going to die, so preparedness is important now, not later. Sometimes people who are are managing a chronic disease in palliative care (but are not dying soon), want to have difficult conversations with their families about advanced directives, and what quality of life means for them. End-of-life doulas are trained to facilitate these conversations with families. For example, a mother knows she does not want to be intubated, and that she wants life-sustaining measures to be withdrawn at x point--but she knows her husband and children will fight this decision. The emotions are strong. Having an objective third-party facilitator, and advocate for the patient, can help break the cycle of talking AT each other and lay the path for talking WITH each other. Sometimes we want to save people because we love them and we crave control, and sometimes we need to be shown that love is honoring what that person wants, even if it won't save them.
Too early, too late, or right on time, an important thing to remember is that once you engage an end-of-life doula, you are NOT obligated to meet with them regularly until you die. The dying person is in control. If they say hey, I could use a month's break, then that is what they get. If they say I need you for this portion, but I just want to be with my family during my dying process, that is totally fine. No doula will impose a certain number or length of meetings. The patient decides what the commitment looks like, and can change their mind whenever they want.
If you've made it this far into the post, then you've got your answer: it is almost never too early, and seldom too late. If you have any other questions, feel free to contact me.