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.

We're Failing Families

Are We Failing Families At The End Of Life?

Of course we are failing families at the end of life!!

Death and dying are treated as medical events rather than holistic ones! Conversations around the emotional and spiritual aspects of dying and death are completely shut down, circumvented or worse totally dismissed!

In the past few weeks I have received messages from people who are completely alone in their journey. Here’s just one:

“I was told that they were very sorry but there was nothing they could do to help me and that I had less than 2 months to live. I was at that appointment by myself (well, I had my service dog who is always with me) and, having just been told that, the appointment ended and that was that. I was considered to be in such bad shape that nothing could extend my life even 2 more months so there was to be no further contact although the radiation oncologist gave me radiation to the bone marrow site to help with the severe pain. My closes family is 600 miles away so there you go, I was on my own.”

Most of us can’t even imagine how that would feel! Was she even able to process all the options presented to her at that meeting? Were there options presented at that meeting? She didn’t seem to remember so.

I offer an alternative solution as a Holistic Support Specialist, a concierge service. Available to be there at time of diagnosis or poor prognosis and able to follow along at the direction of the patient, for as long as desired. Doctors can hire me to be at these initial appointments and then patients can choose to have just that one contact, or to continue a relationship.

The last phase of life (beginning at age 60 or upon receiving a life-limiting diagnosis) brings the realization of our mortality. The generation currently entering this last phase is unlike any before with more having never married or remained single after divorce or death of spouse. They are also the first generation of DINKs (double income no kids). They also have opted for more solo spiritual paths rather than organized religious paths, thus leaving them without possible spiritual support and guidance during this time. They are also the first generation to have moved across country for work, leaving behind the family support system.

This means that those facing their mortality and their caregivers are potentially doing it alone in many ways. We can’t wait until death is imminent to implement an action plan.

If you or anyone you know has a connection in a doctor’s office or an organization that would be willing to sit down and carve out new solutions to this problem with me I am more than open and willing!

Carol

Holistic Support In Uncertain Times

Carol was the neighborhood mom of my adolescence. Carol’s daughter, Marsha, and my younger sister were the best of friends. While in our youth we were not allies, as we grew into adulthood we grew closer.

I had peripherally understood that Carol had battled a few different types of cancer throughout her life. It’s unfair really, that anyone would have to face multiple cancer fights, but she was known as a fighter. Even in our youth, her warrior spirit was recognizable.

But there comes a day in every warrior’s life when the sword and shield get heavy and it is time to lay them down.

Carol was at peace with her decision to forego aggressive treatments. She was tired and just wanted to BE: BE with her family, BE in her home and to BE with her God.

Carol was at home with hospice care and as so often is the case of only daughters, Marsha was the caregiver of record.

Upon my arrival I found the energy of the house to be chaotic. This is not surprising as our society has created an atmosphere that treats death as a medical event, rather than a holistic experience. Often an individual internally senses when it is time to let go and accepts this new phase of their journey, but in an effort to ‘stay positive’ the family can pressure the patient to ‘not give up’. This fear-based disparity creates a chaotic energy in the environment.

Acceptance is a very different energy than giving up. Giving up is premature disengagement usually stemming from depression. Acceptance is completely different. Acceptance is no longer fighting against the tide, it is allowing peace to take the place of fear and standing in the love of those surrounding you. Acceptance transforms the scared energy into sacred energy.

Carol was in acceptance. Her daughter was in acceptance. The rest of the family, maybe not so much.

Acceptance became our first goal so sacred things could start to happen.

Families need permission to be ok with a patient’s decision. A simple “It’s ok” from someone with experience often opens up a floodgate of relief from self-imposed criticism.

I observed the family as it operated organically. I saw who was comfortable providing what, supported their strengths and nurtured their perceived weaknesses. I could identify small but significant shifts to facilitate the transition from crisis energy to sacred energy.

Once that happened, peace replaced the panic.

I watched as Marsha used the therapeutic ritual techniques I’d suggested to provide holistic support to her mother. Therapeutic ritual techniques not only provides practical emotional and spiritual comfort to the individual, but it also offers an outlet for the underlying helplessness caregivers experience while caring for a dying loved one.

I never orchestrate anything when I am providing holistic support. I aim to be non-invasive and wait for organic opportunities to facilitate sacred moments. When I was alone with Carol I offered spiritual and emotional support and encouragement. When I was alone with family members I listened to their deepest fear revealed and spoke to that.

You can’t know from one moment to the next what will be of significance so I am always looking for signs. While her son was catching me up on his life, I noticed a change in Carol’s face. I knew she was looking through the veil to the other side. She smiled, sighed and said ‘Ooohhh’. I encouraged her to share her vision. She said she saw so many colors. All kinds of colors. Colors she had never before seen. When I asked her what it felt like she said ‘Joy. It feels like joy.’

I saw the glow of her vision reflected on her face.

Carol died surrounded by her closest family members just three days later.

Providing holistic support to those facing a life limiting prognosis whether due to aging, trauma or disease is the greatest honor of my life. I understand the complicated struggle that happens along the journey between life and death. I am comfortable having the uncomfortable conversations and holding space so that families and individuals can find their own path, create their own memories and feel empowered in their own experience.

My greatest wish is to support more individuals and families in shifting from scared to sacred.

Judith Klemos BSW, CTTP, ULC Minister
Healing Rites of Passage
http://www.willowsongmedicine.wordpress.com
219 488 6176