So, You Want To Be An End of Life Doula…

Maybe you’ve taken care of your parents as they took their last breaths. Maybe you’ve taken care of your own spouse or another relative as they died. There is a sense of purpose that fills you. A higher sense of purpose than you’ve ever experienced before. As time passes, though, it leaves you wanting more. It’s important work and you want more of it. Then you hear the term, ‘End of Life Doula’ and it hits you: “This is what I’m called to do!” You had no idea that there was a job like this! And you ask the next question…

“I want to be an end of life doula. How do I start?”

Let’s start with what you mean by that. What does being an ‘End of Life Doula’ look like to you? What do you envision when you ask that?

The answers I get to that are some variation of “I cared for my mother when she was sick and dying and it was so beautiful. I want to do that for other people.”

I took one local EOL Doula training program, just to see what was being taught. Having worked as a hospice social worker from 1990 until 2005, I didn’t need a training, but I do like to know what the pool is filled with before I jump in.

Others in that class had come because they had a life-changing experience caring for a loved one as they were dying. Now they wanted to do that with other people. They had grand visions of coming into other’s homes armed with candles, bibles, and essential oils to be some sort of savior. That they would have just the right tools to take a situation and make it into something grand. Their visions were full of selfishness. Their visions were about them being not only the center of attention, but the center of control. Basically their dreams were of them saving the day. Yet, none of them felt capable of jumping into being an End of Life Doula after that completing that training course.

So when I ask, ‘what does being an End of Life Doula look like to you’, and the answers I get are self-centered, I understand why.

I understand because I understand human connection and human needs. What happened is that these untrained individuals had an organic life-changing experience and wanted more of that. They wanted more soul connection. More genuine human connection. More purpose in their life. And none of those are bad things…but, we can’t seek to recreate those things with other people’s families.

The whole key is that these individuals had those moments with their own family members! THIS is what we want, or should want, for others! The opportunity to have these life changing experiences themselves! With their own loved ones!! This is what an End of Life Doula should be about…creating a society where everyone is so comfortable in accepting mortality that they are all taking care of their own dying and having these organic life changing experiences.

There are so many ‘training’ programs across the globe with more popping up every day. At one point I even considered creating one myself, because the trainings I encountered are lacking. But I stopped creating that course because I don’t think it is something you can learn in a weekend or even a 16 week course. And definitely not online. That’s just my opinion. There are many who speak highly of one or two particular online courses, but I’m not willing to pay out that money just to investigate.

The best way to train to be an End of Life doula is to be a hospice volunteer. There is no better training than hands on experience and you have an entire team of professionals behind you.

The second best way to train and operate as an End of Life Doula is to volunteer at your local extended care facility. These are people who are not surrounded daily by family members and are truly at the ends of their lives. Providing these volunteer services will give you hands on quality time with those who are dying, without the weight and liability of a solo business.

If you are hell bent on becoming a professional End of Life Doula there are things you need to know.

First, the majority of End of Life Doulas are not making a living doing it full-time. Those few who are, have been fortunate to fall into organic circumstances that supported it.

Second, it is not a service covered by insurance so families/patients will need to pay out of pocket for you. Which means you are going to be serving an elite clientele. Not everyone who is dying can afford to purchase your hourly rate.

Third, there is a big push for End of Life Doulas to be accepted as a part of professional death care, by having it be part of hospice and reimbursed by insurance. While this might seem like a great idea, it isn’t all it’s cracked up to be.

At one time hospice care was not covered by insurances. I started in hospice when it was covered by Medicare, but not Medicaid, nor insurance policies. At the time, I worked for a non-profit agency so we took donations and were able to care for many without the ability to pay. Soon after, Medicaid came onboard, and then the insurance companies. It was a good time to be in hospice. We didn’t have things like ‘productivity quotas’. We were free to make our own plans with the patient and family, seeing them as often or as little as they wanted and for as long as we wanted.

But as hospice became recognized as a care model it became recognized as a business. And then it became BIG business. With that then came more and more expectations of staff to quantify their value. Things like ‘sitting at beside providing presence’ could not be quantified so neatly. Back then the caseloads of social workers was a maximum of 25-30 in a metro setting (patients closer together/less drive time). We saw each patient at least once a month unless they declined social work services. When our caseloads hit 40 we started talking about hiring an additional social worker.

Now I am seeing social workers posting typical caseloads of 45-65 in the same metro setting. With rural caseloads being similar, where a drive to one patient may take up to 1.5 hours, sucking up the majority of the forty-hour work week. All this despite the Centers for Medicare & Medicaid Services guideline of 24.7 average caseload. Can you do the math on this, how many quality visits does each patient get from each social worker?

In addition to these high caseloads, agencies make a practice to pull social workers, often at a moment’s notice, to do admissions, which requires rescheduling the pre-planned visits with existing patients. If those patients were looking forward to that visit and had things they wished to talk about, the message to them is that their needs are not important to the social worker and the rapport and trust that was building takes a hit. The median length of stay in hospice is 24 days. It isn’t compassionate to cancel any scheduled visits during that time.

It is my belief that if End of Life Doulas are incorporated into the hospice care model they will go the way of the social workers (and chaplains and bereavement coordinators). It will be welcomed and honored in the beginning and as time goes by it will lose its autonomy and flexibility becoming overexposed and improperly utilized. After all, if social workers, chaplains and bereavement coordinators had reasonable caseloads, and were being utilized properly there would be no void for end of life doulas to fill.

If you STILL want to be an EOLD here’s what I suggest…

If I haven’t talked you out of being an End of Life Doula at this point, congratulations. You have grit. The world needs people who are willing to hold the space for others who are dying and grieving. Not everyone who dies qualifies for hospice. We think hospice when we think dying and death care but the truth is that 1) people wait waaaaay too long to go on hospice to really get the full value of the service. 2) many people die everyday without a terminal prognosis of 6 months or less to live.

Just forget about trying to build a business out of it…at least for now.

Start your practice to be an End of Life Doula in your own circle. Be their EOLD. Teach your people what you learned from the experience that brought you such peace. Be brave enough to say, ‘do you think this decision will bring Aunt Vi more quality of time?’ Ask your elders questions about their desires for end of life support, treatments, wishes. Make your own funeral arrangements. Talk to your kids about dying as a part of the life cycle. Have deep conversations about your beliefs.

Then extend it to your circle of friends. Offer to help a friend take care of her dying relatives. Show up to provide companionship- not just to the dying one, but to the grieving one taking care of them. Do some laundry. Make some food. Offer to take a shift so they can take a break.

If that isn’t enough, then go on to volunteer at your local hospice and extended care facilities. Serve where it is needed most if you really want to serve.

End of life doulas don’t need to be a recognized profession. They need to be a recognized foundational part of communities caring for their own.