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.

Best Death Possible (part two) – A Daughter’s Mission

The Difference A Doula Makes

An experienced Death Doula is someone familiar with many faces of death. While death is universal in its presence, it is individual in its experience. In my situation, a Doula would’ve been outside the grief circle, someone who could hold space for me as I expended my energy fighting for my mother. He or she would be able to offer perspective and guidance to spark ideas like bringing my mom’s personal items into the hospital, taking pictures, and bringing in music. A Doula would’ve been grounding for me.

It all happened in a week; Tuesday to Tuesday. When my mom was admitted no one suspected she wouldn’t be coming home. It was too fast for any of us to catch up, we only had a week; but that week will be with me the rest of my life.

We think of Death Doulas, or End of Life Doulas or even hospice as being appropriate only when death is imminent. Our most important work, however, happens long before that time. I chose to refer to myself as a Sacred Attendant, simply because that is what it feels like to me – attending the Sacred. Acceptance of death needs to be woven throughout our lives. It is not a final chapter of our story, but more like a character in the background without the knowledge of its time of arrival, nor the circumstances of it. Conversations about death cannot be reserved for some imagined time in the future when death appears imminent. They also need to include more than just the ideal circumstances because that just isn’t probable. Weaving death positive awareness into things like birthday celebrations, traumatic events, or illness could help remedy experiences like ours.

Thing 6 I’d change is doing a death plan. That first night when she said was scared, I would’ve stayed at the hospital. I would’ve pulled out a notebook and written down all the things she would want at her funeral. I would write a letter she’d dictate to whomever she wanted. I would’ve asked what songs she wanted at the service and what readings she wanted. I would’ve updated her living will with Health Care Representative (Proxy) designation. I would’ve asked her important questions regarding what she wanted to leave behind for all of us. I wouldn’t have hesitated to discuss this because we didn’t think it was time.

As a result of my experience with my mother, and with so many others, I created LIFE’S Book, an opportunity to create a death plan and so much more. Completing something like this with my mother would’ve not only established her wishes, but it would’ve been a bonding time for us. It would’ve also provided some guidance for others who didn’t know what to say while visiting. My mother could’ve asked them to simply pick up the binder and pick a page.

The Gift Of Time

Working in hospice I saw the Gift of Time in action. In a death denying society, the Gift of Time is bestowed upon those who chose to acknowledge time for letting go and embrace it. Peace comes with the embracing of death. Understanding that it is no longer a time to fight against the disease or circumstance, but to fight for magic in the last days. It is here that the term ‘good death’ was coined. A death free from suffering and in the comfort of their own home or home-like environment, surrounded by friends and family.

However, there are so many other types of death happening at any given time, don’t they deserve magic too? People die in car accidents, from falls in their homes, from assaults, and from sudden illnesses like stroke or aneurysms. Where are the good deaths for these people? Where is the dying-specific emotional, spiritual, and soul support for these folks? And what of those who lie down to nap one day and never wake up? Where are the goodbyes for their families? Their last words? And what of those who live alone with no one to ‘surround’ their bedside and care for them in their own home? What of them? Where are their good deaths?

They say there are no do-overs in life, and yet I see Life as one big do-over. Every day I get the chance to do things differently than the day before. I learn from my past experiences, I do not view them as insufficient or lacking in any way. The things I wished to do differently led me right where I am today, offering my support to others to reduce these events, by having conversations earlier than ‘imminent’. By doing this differently, I am honoring my mother’s death.

I was just getting my feet wet in the local community network groups talking about dying and death and…

Then CoVid19 Hit

The deathbeds now are even more sterile and are missing most or all family and friends. Fear of death hangs in the air like grey clouds in the Michigan winter sky. Still there is no acknowledging it. No preparations. No magic moments within conversations. Not even while quarantined together have there been conversations about death wishes. There’s just been blaming, conspiracy theorizing and more denial.

What’s emerged is a grief crisis. Compounded complicated grief where before there would be straightforward grief. On top of losing loved ones, we are losing our traditions for grieving. No matter your spirituality, religion or culture every aspect of grieving has been affected. Everything from not being able to be at the bedside to hold a hand, to not being able to have a funeral, with a million things in between.

This results in bereavement counseling being more important than ever. A counselor or a group to hold space to offer comfort and support. There will be more turbulent feelings. More uneasiness. More anger. More regret.

We will shortly be coming upon the first death anniversaries and the grief crisis will hit people unexpectedly. How we honor those anniversaries will be most important and if we do it right, will spark new traditions by creating meaningful ritualistic ceremonies to honor that date. We can only hope that by the time the first of the death anniversaries from this pandemic time roll around that the pandemic has subsided enough to allow more ritualistic ceremonies.

This is something I am preparing. This is something most end of life consultants are preparing.

My Mission

Ask 100 people what their idea of a ‘good death’ is and statistics say that 80 of them will say ‘at home surrounded by family and friends’. Some might even choose a facility with a ‘home-like environment like a hospice house, surrounded by family and friends’. Perhaps because they don’t want their family to have to live in the place where they died, or maybe they do not wish to burden their loved ones with caring for them. Whatever the case most people will not say ‘in a hospital’ and yet that is where 60% of deaths take place.

Why?

Some of it is due to death phobia. The medical community, in particular, has a hard time considering death, as was evident with my mother’s team. They are taught that death is an enemy to fight against at all costs. That cost is too great however, when it robs people of precious time with loved ones.

My mission is to offer the ‘best death possible’ for everyone. None of us can change the circumstances surrounding our death or that of our loved one. However, within the scope of that circumstance we can offer the best death possible.

The best death possible means embracing the circumstances as they are and doing it ‘your way’. It doesn’t mean giving up, so much as it is giving in to the flow of life. I have had the privilege of witnessing many magical life-changing moments that took place at a bedside. I want to bring that to anyone who wants it.

Unlike a hospice referral, to employ a Death Doula there is no need for a terminal diagnosis and 6 months natural life expectancy prognosis. The decision rests solely with the individual or family to initiate at any time. It can be initiated years before the actual death, making preparations, having conversations, and creating legacies. This starts building a relationship with someone who is then familiar to you at the end of life, providing all that much more comfort.

Embracing a best death possible philosophy provides opportunity for patients and families of trauma victims the same Gift of Time as hospice patients and families. It offers the same post-death follow up and support as well. It offers something more than what has been offered to date. A Sacred Attendant or End of Life Doula isn’t meant to replace Chaplains or Social Workers, it is something additional that offers a broader blanket of comfort care to a patient and their families. The service isn’t paid for by insurance or Medicaid/Medicare, so it isn’t restricted by regulations for reimbursement. The Attendant is free to provide whatever non-medical service is right for the individual and the family unit, and to provide it as long as necessary. She or he is not limited to a ‘justified’ one hour visit once a week.

Think what peace of mind this service could be to a son who lives 1,000 miles away from his mother who has dementia and lives in a facility. That he can have someone trusted to be there as many times a week as he wants.

What comfort it could be to a daughter from out-of-town to have in-town support as she lovingly cares for her father in his home.

What clarity it could bring a family whose members all seem to be on different pages.

What a difference it would make in the hospital to have compassionate end of life support available to individuals with sudden illness or decline, or traumatic injury and their family units.

And what of this…what if hospitals offered this service to family units right now, BECAUSE of CoVid protocols and restrictions? Why not give families something to replace a small bit of what has been taken away? It’s the right thing to do.

The services of Death Doulas, End of Life Doulas, Sacred Attendants, etc… will be unique to the individuals that provide them. In overview terms, they provide non-medical support to clients and families. Specifically, they might make a well-timed phone call or text; Be a visitor who is comfortable sitting in silence; Ask just the right question at just the right time; Or offer a listening ear you are not afraid to bend. These are the tangibles every End of Life Doula (EOLD) might offer. The innumerous intangibles are impossible to list here though because they are less about doing and more about being.

Peace Be With You…And May You Be Peace

If you or anyone you know feels they would benefit from this service please speak up to your doctors, your medical team or locate your nearest End of Life Doula through the End of Life Collective https://collective.round.glass/End-of-Life/about or the National End Of Life Doula Alliance https://www.nedalliance.org/ or reach out to me personally at healingritesofpassage@gmail.com or via the contact form on this site.

Interfaith Ministry

“I’m not religious. I’m spiritual.”

I have heard this more often than not in the past 15 years. It is how I’ve described my own Faith system for more than 30 years now.

And it is exactly why my compulsion to serve in a spiritual role led me to my recent induction as a First Responder Chaplain.

When my daughter was born 27 years ago, I sought a church that would meet my/our spiritual needs in a broader capacity. I enjoyed the ritual and community of church, but not the dogma. My search went on for years as I researched and explored many different faith systems.

Along the way, one thing became clear – spirituality resonated with me, religion did not.

I grew up in a very Roman Catholic household. My mother’s brother was a missionary priest stationed in the Amazon and their two sisters were School Sisters of Notre Dame nuns. My uncle would say mass in our living room when he was home. It is here that I developed my love of ritual, I’m sure of it.

I went to a Women’s Catholic liberal arts college where we attended mass either in the lounge in our pajamas or in the beautiful chapel and full of dancing, singing and poetry.

After college I attempted to find that same sort of relaxed, inclusive, interactive atmosphere, to no avail. Studying other religions, philosophies and ways of life not only enabled me to expand my knowledge and understanding, it also enabled me to collect rituals, beliefs and practices that resonated as True for me.

I learned how similar all religions are in their core teachings, and how much of what we know as organized religion was appropriated from nature religions and Eastern philosophies.

For my own spiritual fulfillment I found solace in the nature religions with added appreciation of Eastern Philosophies.

In 2003, I became an ordained Minister in the Universal Life Church, because I wanted to offer an alternative officiant for anyone identifying as ‘spiritual, not religious’.

Since that time I have offered what I refer to now as Interfaith Ministry. While the dictionary defines ‘Interfaith’ as “relating to or between different religions or members of different religions,” I do not. That same dictionary defines faith as follows: noun -1 complete trust or confidence in someone or something -2 strong belief in God or in the doctrines of a religion, based on spiritual apprehension rather than proof.

I believe Faith goes beyond the boundaries of religion.

People can have faith in one another, in God, in the Universe, in Jesus, in a Creator, in Yahweh, in Muhammad, in Buddha, in Life, and in themselves. Faith is not reserved for those who find solace in religion. Faith is what we call the system of beliefs a person holds. Period. Thus, interfaith is relating to or between different faith systems that may or may not include religion.

So, it is here that I landed in order to offer spiritual support to any person in need. I can as easily sit and read the Bible to a non-practicing Catholic woman, as I can read The Good Book to a Humanist, as I can read from A Course In Miracles for New Age believers, as I can read poetry and prose for those more secularly minded.

More than a few times I’ve been in a situation where chaplaincy services were offered to me and I regretted accepting them. I am not a fan of having other people’s beliefs imposed upon me, but that is exactly what happened. There was no room in the conversation for exploration and true processing of my feelings and emotions in that time of suffering. I found no comfort in their words and their beliefs. I found myself shutting down and saying whatever I could to get them to leave the room as quickly as possible.

So I set out to provide actual interfaith, nonjudgemental spiritual support sans agenda. I wanted to provide what I couldn’t seem to receive from anywhere. Perhaps it is my social work training, or maybe it’s my innate nature, but in my mind spiritual support is supposed to provide comfort. Comfort does not come by disputing a person’s belief system, unless the belief system itself is creating the suffering.

I have attempted to serve in a more official spiritual capacity for many years, however most roles are Christian based and require Theological training (heavily Christian) which I have not chosen to pursue. So, when I met a woman who talked about just becoming a First Responder Chaplain my ears perked up and I enrolled into the very next training.

The training was definitely geared towards Christianity but because of it’s 501(c) status, they could not refuse training to a non-Christian. In addition, I received no ill treatment because of my different belief. In fact, it was clear that they respected my different faith system and saw where I could provide support that they were uncomfortable providing. Win/Win. That said, I will tell you there were things that I felt were imposing and I let that be known.

My intention is to serve those who

  1. have followed a solo spiritual path
  2. are at a crossroads, in celebration or in crisis
  3. in need of guidance, support or ritual within their framework of faith
  4. and find themselves without a spiritual advisor.

To provide this service to, and in conjunction with, our First Responders to make death notifications or offer support in times of trauma is a privilege I do not take lightly. Not everyone who receives bad news or is involved somehow in a traumatic event will be comforted by traditional means.

I do not think that my perspective is unique in this, although I do think it is a well kept secret. To some extent there is still backlash experienced when one is vocal about not being Christian, so those who have alternative faith systems tend to be silent about it. However, more and more I have been privy to officiating rites of passage for groups with mixed faith systems and the experience is more beautiful than you can imagine.

The key to live harmoniously is to focus on what unites us, not on what separates and divides us. To close ourselves off from others because on the surface they appear to be ‘different’ doesn’t serve our highest good. Our highest good is served by creating brotherhoods and sisterhoods; by forging unimaginable alliances; by not investing ourselves in being right, but in being happy.

Happy people don’t do harm. They don’t seek to judge. They don’t seek to impost their beliefs on another. They don’t seek opportunities to convert others to their way of thinking and believing. Happy people recognize the happy in others. Happy comes in all shapes and sizes.

Chaplaincy, Spiritual Guidance or whatever else you name it, needs to be about one thing…holding the Space for Light to enter. That Light might be the breath in your body, the love in your heart, the God within you or the gods above you. It is not for me to dictate that to anyone. I take it as my solemn responsibility to hold a mirror up to reflect and magnify the Light in each person I serve, in whatever space I’m in, in whatever way brings comfort to those around me.

Peace Be With You

The Story Of Hope

I come into people’s lives at times when hope is challenged. I hear phrases such as, “we aren’t giving up hope”, “there’s no hope” and “it’s hopeless”. Individuals often describe feeling hopeless as well.

Hope is not a feeling.

It is something you feel yes, but in and of itself, hope is not a feeling. Think of it like ‘wet’; You can feel wet, but wet is not a feeling.

Hope is a process.

Isabelle found a lump in her breast one day while taking a shower. She noted it, felt a little concern and decided to monitor it before mentioning it to her doctor. She hoped it was nothing.

A couple months go by and Isabelle feels the lump has gotten bigger and seems to be more painful than previously. She makes a doctor’s appointment and hopes it’s nothing.

Her doctor feels it warrants further examination so sends Isabelle for a mammogram. Her doctor and Isabelle hope it’s nothing.

The mammogram indicates need for a biopsy. The doctor and Isabelle hope it’s nothing.

The biopsy comes back malignant. The doctor recommends a lumpectomy and a biopsy of the lymph nodes to determine the extent of the condition. The doctor and Isabelle hope there is nothing found in the lymph nodes and that the lump is removed successfully.

The lymph node biopsy comes back positive for cancer cells. The doctor recommends a radical mastectomy and chemotherapy. The doctor and Isabelle hope this will stop the progression of the disease.

After months of treatment the cancer has spread very aggressively throughout her body. Further aggressive treatments would deplete Isabelle’s quality of life with no likelihood of a cure. Isabelle foregoes aggressive treatment and hopes to fill the rest of her life with quality family time and be comfortable.

Surrounded by her family and friends daily, Isabelle hopes that she has enough time on Earth to leave no words unspoken, no amends not made and no doubt how much she loved life. She wrote letters to be read after her death to special individuals and hopes each one brings a sense of peace and closure to the recipient. She hopes that she made a difference in the lives of those she loves and she hopes that continues on in them long after she transitions to the next place.

Isabelle’s family and friends hope they have enough time to give back to Isabelle all that she has given to them over the years. They hope that she feels loved during the Living Wake they held for her. They hope that she knows she is not alone. They hope that she is not in pain. They hope that they will see her again some day, in some way. They hope.

Hope takes many shapes depending on the evolution of the situation. It morphs and transforms at the direction of its beholder. It relies heavily on perception and mindset. It is undeniably fluid.

Hope is ever present and can be felt by proxy. If you can’t feel it someone else can feel it for you. It is often thought of as contagious for this reason. The mere action another holding hope for you and your situation, can help you feel hope too.

Hope is not tangible. Hope is not concrete. Hope is organic and cannot be defined. It is a dance that cannot be choreographed by a few well spoken words. Hope comes from your soul.

You are either one to experience it or not. In my experience those with hope are more positive, finding all reason to hope despite the situation. Also, in my experience however, I find denial disguised as hope.

Denial is often portrayed as ‘positive thinking’. Denial is the underlying belief that if I ignore something it will not come into being. Denial is considering only the best case scenarios and suppressing the fears of the possibility of an undesired outcome.

Denial isolates and divides, but true hope unites and bonds.

Hope is not holding onto a desired outcome no matter what. True hope is holding the desire for the best outcome in one hand, while holding acceptance of the possibility of the worst outcome in the other – and preparing for both.

It is in this preparation for both that the uniting and the bonding happens.

When I consider things, I always play the what if I’m wrong? game. “If I do this thing and I’m wrong then (fill in the blank)?” And then I weigh it against “what if I do that thing and I’m wrong then (fill in the blank)?”

So, let’s play that game now.

Imagine a situation where you have been diagnosed as terminal and never consider the possibility of death because you are being ‘positive’. You never have conversations about it with others. You never express the things on your heart. You never talk about your fears. You never express your wishes regarding your services. You never make preparations.

You think about dying. You worry about it. You have no one to talk about it with though because you are being positive about it. You lie in bed at night and think of all the things that you will miss. You feel great love but do not express it because it will scare your family to think you are giving up.

At some point the treatment is deemed ineffective, causes severe side effects and reduces your quality of life. You have no energy to visit with others. Treatment is stopped and you are sent home with hospice.

You die three days later with no chance to say a quality goodbye.

How does that feel?

Now imagine a situation where you have been diagnosed as terminal and pursue aggressive treatment while also accepting the possibility of death. As you go through treatment you have open deep conversations with family and friends about your fears and your hopes. You begin to make decisions about the celebration of your life. You make a list of songs for your memorial service, last wishes about care and you even write a letter to be read at your service.

You cry and laugh with your loved ones. The whole experience draws you closer to your family and friends.

Your aggressive treatment is successful and you live several more years with these deeper relationships.

How do you feel?

Which scenario feels more hopeful now?

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

Employee End of Life Benefits

In my 30 year career I have worked several places and not one employer had what I call sufficient support for those who were bereaved. Not even the hospices.

Three days of paid leave and maybe some flowers. That’s usually the sum total of support an employer lends to an employee after they experience the death of a loved one. There is of course, FMLA but that just protects your job to some extent, it is not truly support. It’s also mandated by law. Sometimes, individual employers will extend additional emotional support by offering some workplace flexibility when an employee is taking care of an aging or ill loved one, but it isn’t status quo across the board.

Our aging boomers have caregiving children in the work force. Many have to give up their jobs in order to take care of their parent. While employers are not required to do more, I think they could.

I am exploring a new benefit and am looking for emplyers who would be adventurous and caring enough to join me in providing a non-traditional benefit to their employees.

End of Life Specialist Benefits

In addition to the traditional three day paid bereavement leave and flowers, I suggest employers consider end of life specialist services in addition to traditional EAP. As an end of life specialist I provide services including but not limited to:

  • advanced directive planning
  • emotional estate planning
  • bedside support
  • healing bedside rituals
  • education on the end of life process
  • assistance and emotional support navigating the medical community
  • facilitate support groups
  • bereavement support follow along
  • support for anticipatory grief
  • grief counseling
  • legacy projects
  • facilitate educational and interactive seminars
  • mediate/facilitate difficult family conversations
  • provide grief support to co-workers after a employee death

A one year contract specifically designed for your company and your employees can include all or some of these services. In an age where the topic of death is taboo and the event often spirited away behind the walls of medical institutions there is a new age dawning. I am part of that new age, providing support when it matters most. I have a lifetime career of experience that has proven time and time again to benefit in the simplest ways resulting in profound shifts regards coping and healing related to the end of life stage.

As a business owner you must realize the impact that illness, dying and death have on your caregiving and bereaved employees. You must also realize that this impacts the quality of work they can provide you during this time. Having your human resource amply supported during times of caregiving and bereavement prevents depression, job loss, production decline, grave errors in judgment, apathy as well as reducing absenteeism.

I hope I do not have to outline all the benefits to your bottom line that such a non-traditional benefit would provide. Just look at how non-traditional benefits have impacted the bottom line of companies such as Google and Amazon!! Non-traditional benefits decrease turnover rates, increase morale, decrease on-boarding costs, increase productivity, increase creativity and encourage unity and loyalty just to name a few.

But really, all other benefits aside, its the right thing to do for those who have chosen you as their employer. With this non-traditional benefit you make a difference at a time when no one else knows how to. We each only have one death in this life. There are no do overs and I meet people everyday who have profound regrets surrounding the death of someone they’ve lost. It doesn’t have to be that way. The loss of a loved one hurts, we can’t change that. We can however, change the circumstances in which it happens and provide more support to those in need.

I’d love your feedback to this non-traditional benefit whether you are an employee or an employer. I welcome all conversations. Please share your thoughts on how you think this benefit would impact you as an employee or an employer.

Thank you.

When Death Comes – An End of Life Doula Perspective

Early on Life taught me that it had a set of bookends named Birth and Death. I was not afforded the luxury of death denial. I understood clearly that death was always part of the deal.

This perspective impacted my life in a deep soulful way. A way that made me seem odd in the eyes of my peers.


When I first heard the term, ‘End of Life Doula’ I thought, “this is what my whole life has been about.” Because death has had such a prominent place in my experience of life, I organically became the ‘death guru’ in both my personal and professional lives. Intuitively I understood what someone dying was seeking and what those who were grieving required. It isn’t something that can be taught, it must be lived through.

Death in our modern society is viewed as a medical opponent meant to be thwarted at all costs, yet the reality is that we all have two book ends. At some point we must come to acceptance that our time on Earth is finite and that treating death solely as a medical event, without proper attention to the spiritual and emotional needs, leads to regret and complicated grieving.

Because of my experiences I have learned how to walk with death while in the midst of living. I have discovered the sweetness this perspective brings to living and wish to bring it to others. This is why I suggest people begin looking at end of life issues as early as age 45 or with the first hint of a medical scare, rather than just when death seems imminent.

It is off-putting to some because our society has done such a good job of hiding death away in sterile environments and labeling any reflection as ‘morbid’ or ‘negative’. To the contrary, openly embracing the inevitability of death makes us appreciate life even more. We live deeper because we are not closing our eyes and lips in denial. When our eyes and lips are open, we place more value on our relationships and experiences and less on the pursuit of material gains.

The more we integrate discussions about dying preferences into medical treatment discussions the more informed each patient’s choices can be. Subsequently, the more discussions we have the less alone we feel.

This is not easy for most though and that is where I want to be of service. I want to be one to facilitate discussions, listen actively, offer inspiration and comfort in situations where others may not know how. To this end I have compiled my experience and education into an End of Life Planner that gives structure and direction through these waters. It serves as a guide for those who wish to explore their fears, preferences and beliefs around death and dying. I call this ’emotional estate planning’.

Through tragedies we are opened up to a new level of connection with others. Why wait until then, though? Why not open up to real connection talking about something so real and inevitable as death and our wishes around our care during that time?

When death comes we may never be ready, but that doesn’t mean we can’t be prepared.

When Death Comes
by Jade Klemos

When Death comes, it is not convenient, or better, or easy.
It doesn’t come with manners, etiquette or rules to follow.
It doesn’t come bringing a gold leafed invitation you can decline,
It comes with surgical steel precision dissecting your life.

Death may come in the quiet of night with a crash
It may come at high noon with a silent breath.
It may be welcomed like a soft bed of blankets after a long journey.
It may be as disagreeable as a bed of nails.

Death comes without explanation, justification or reason.
It comes without being fair, or just or reversible.
It comes without your permission, approval or acceptance.
It comes without an undo button or an option to refuse delivery.

When Death comes, it cares not what God you do or do not believe in;
Whether you went to temple, church, mosque or Sunday brunch.
It cares not what’s in your bank account, or on your to do list.
It certainly cares not whether you are ready.

When Grief comes, it comes ripping shreds of flesh from emotional bones
Filling them with marrow of sorrow.
It cares not how many birthdays you’ve had
Nor how many degrees hang on your wall.

Grief comes bringing unbelievable pain and intolerable numbness.
It comes bringing more questions than answers.
It may come as a gentle wave on the shore Or as a tidal wave tossing you under and over.

Grief comes without respect to place, or time or status.
It wreaks havoc with equilibrium and motivation.
It causes doubt, isolation and disorientation.
It is unilaterally deaf to desperate pleas for mercy.

When Grief comes, it comes without kindness or compassion.
It cares not that you are overflowing with it and unable to breathe.
It cares not that it brands epitaphs on your heart.
It cares only that it change you forever.

To Those Who Would Shame Me

When I first posted in a local facebook group the announcement of the Clarkston Death Café, the very first comment was “Making money off people’s grief and suffering. You should be ashamed of yourself.”

My first reaction was one of anger. “How dare you shame me, sir!” My second reaction was confusion because there is no charge to attend a Death Café.

Then I realized he might’ve gone to my profile to see my occupation as an end of life professional.

The next thoughts came flooding in and I wanted to ask all sorts of questions like, “do you have this same response to doctors, nurses, chaplains, funeral directors, cemeteries, florists, caterers, or anyone else involved in a dying person’s transition?” “Why am I so special to invite this response?”

To this man and to all others who feel this way, I’m sorry.

I’m sorry that you see it like that. I’m sorry that you have had experiences with the medical community who treated you and your loved one with disrespect and a lack of compassion.

It is that which I mean to counteract.

You see, I’ve had that experience, too.

While I have spent 30 years working in and out of hospice, it was my own mother’s death that rendered me helpless. She was 74 when she was diagnosed with breast cancer. She was also a volunteer for hospice. Her doctor convinced her to pursue chemotherapy; something I was against. Her sister had breast cancer years before, had a mastectomy and took tamoxifen with great success, so that was my vote.

She said she couldn’t let go of her breast. She planned to do chemotherapy and then radiation. It all seemed like a lot, but it wasn’t my death so I supported her as best I could.

Six months later…

She went into the Emergency Department on a Tuesday with difficulty breathing. I rushed to be with her and she introduced me to her cardiologist this way, “This is my daughter. She doesn’t like chemo.”

I SWEAR TO YOU that is exactly how it happened!!

The doctor’s response? “Well, it is nasty stuff.”

Each day my mother was getting worse no matter what treatments they tried. Each day I saw her slipping further away. She was scared. She told me she was scared. I was scared.

By the following Sunday she was in multi-organ failure and we were making arrangements to withdraw the life support she did not consent to.

Monday her cardiologist returned from his long weekend and told us that he called her oncologist who said “some people react to chemo this way, give her steroids”. By this time, we felt it was too late.

On Tuesday we let her go. One week to the day after admission.

In the course of that week there was so much suffering and I had to mine the truth out of the doctors and nurses. If I had not had a history of hospice experience I would not have been able to ask pertinent questions that forced the doctors to start talking truth, enabling me enough time to gather important family members to say their good byes.

As it was we only had a few days to do that. We deserved more. SHE deserved more.

This is just one of a few personal experiences I’ve had with what I call a ‘traumatic death’. But even one is too many.

It is those experiences plus 30 years of professional experience that has led me to want to be a support to those who are transitioning and those who will need to learn to live without those who have transitioned.

Yes, I “make money off people grief and suffering”, if that’s how you want to put it.

When I am sitting with someone who is dying and facilitating a reconciliation with estranged family members, I am not somewhere else making money. I am not sitting with someone else who might need me. I’m not sitting at a desk doing a different job to make money to keep a roof over my head. I am not making money doing something else to put food on my table.

I am right there at the bedside where many do not dare sit. I am right there being present to the grief and suffering where many cannot be. I am right there encouraging a daughter to give her father permission to let go. I am right there holding the hand of the last member of a large family. I am right there to help children understand what is happening to their beloved grandparent.

You know how they call firefighters, ‘fire eaters’ because they run into the fire while everyone is running away from it? Well, by that formula I am a death eater (where are my Harry fans?) because I too run towards it while others run from it.

As for the making money part, I am certainly not an oncologist making hundreds of thousands with every script for chemotherapy. There is no conflict of interest in the service I provide.

I am also not a funeral home that offers jacked up prices for each and every item sometimes exploiting the family’s grief for profit by upselling.

I am also not a merchandiser who covers something in pink and claims to give a poultry 10% to some research development that despite billions of dollars has yet to market a cure.

There is no shame in my game, sir. I stand in service to the light within me to provide presence, compassion and unbiased support to those who wish it, because I did not have that when I needed it most.

Lastly, I say to you, ‘thank you’. Because you enabled me to put these thoughts into words. Without you I would not have written this. Without you I wouldn’t have known that these words needed to be said. Without you I would’ve stayed silent.

We have to get over the societal conditioning that it is acceptable for professional athletes to make millions of dollars to entertain us, but those doing sacred work must live in poverty.

Death Is Imminent

When I try to explain how I can help with the last days or even with the grieving period, I get a little tongue tied. I don’t have a set formula or pat answers to any situation. What I have is intuition that leads me to suggest things to a particular person in a particular situation that remedies a particular suffering. Something I might never again suggest to anyone else.

Dying is the most intimate occasion of our lives.

People die the way they live, so while one may prefer to have every family member around their bed as they cross the threshold, another might prefer to slip quietly across in the middle of the night with no foreshadowing.

My gift is to listen to what is being said, and what isn’t being said, to see what is forthright and what is hidden, in order to offer alternatives that offer physical, emotional and spiritual comfort to each individual involved.

“What can you do for us?”

I can only answer that question one way; in a half hour face to face consultation where I ask a series of questions to ascertain what is most important to you at this time.

From those answers we could have a very good conversation about how I, as an end of life doula, could assist in your current situation.

When I tell people what I do, there are two reactions:

  • 1) “Wow. I wish we’d known about that when my loved one was dying.” Or…
  • 2) “Oh.”

I hate both those responses, the first one is about missed opportunities through lack of knowledge. You can’t know what you don’t know, right? But if you had only known you could’ve made a different choice.

The second one is equally disappointing because in that one word so much is conveyed…”I’m not comfortable with that topic.” It means, when the time comes they likely will not remember to call someone like me to help navigate the emotional waters.

But I’d rather hear those words than. . .

“We should’ve called you.”

I can do no more than offer my service and share a vision with you. You are the one who has to decide to push through the inherited societal discomfort around death to embrace a new way of doing things. I will never ‘sell you’ on my services. I won’t try to convince you that this is the best thing to do in your situation. I won’t do it. Do I think everyone can benefit…yes absolutely. There isn’t one single circumstance I can think of that wouldn’t.

Even if YOU are an end of life doula, you can benefit from an end of life doula!!!

But I won’t sell you on it. It will either resonate or it won’t. But please don’t ever come back to me and say ‘we should’ve…’

My heart can’t take it.

If dying is the most intimate experience of our lives, then grieving is its counterpart for those left behind.

It is truly never too late to call me. The death has occurred, the funeral or memorial service is over, and you find yourself ruminating over what you now think you should’ve done better or differently.

Not only can we explore some rituals to help you over this hump, we can also begin right now to prepare for your own death so that your loved ones will not have your same experience. We can start conversations, create your vision and get everyone on the same page…even if that page doesn’t get turned for many years to come.

Death is imminent for all of us, the only difference is that some of us realize it.

Isn’t That What Hospice Is For?

I spoke to a hospital chaplain the other day to speak to her about my end of life doula services. Her initial response to me was, “that’s what we have hospice for.”

If you haven’t already, pause here to read https://willowsongmedicine.wordpress.com/2019/09/08/the-elephant-in-the-room-is-dying/ which gives relevant facts related to the systematic underutilization of hospice services and late referrals.

First of all, to be referred to hospice you must have a doctor state ‘if nature takes its course, death is likely to occur in six months or less.’ – There is no referral needed to employ an end of life doula. There is no criteria of ‘six months or less’. You call an end of life doula (EOLD) yourself, whenever you want. For instance, you could call for an EOLD consult at the same time you draft a will with a lawyer, to outline your choices for your end of life, whenever that might be. Or you can have your EOLD there at your doctor’s office visit as an extra set of ears and support while you take in the overwhelming information.

Secondly, hospice is not designed for long periods of interaction. A typical social work or chaplain visit is no more than one hour in length, not usually more than once a week. The hospice gets paid a specific amount per day to take care of a patient, so they are careful stewards of their resources. – With an EOLD you are the steward of the resources. You decide what services you want your resources to go towards. You both decide how long visits will last, how many times a week/month/year and what you want to accomplish during that time.

Third, you do not have a direct line of communication to your hospice staff, you must go through the hospice service. – You have your EOLD’s direct number and you’ve worked out between you the terms of service hours and accessibility.

Fourth, If an individual leaves that hospice agency you get a new staff assignment. – Your EOLD is your staff, unless you fire her/him or there is an emergency, she/he is not going anywhere. On the rare occasions that a back up doula is utilized you hopefully would’ve met them ahead of time, or at least been made aware of them.

Fifth, the scope of practice for hospice employees defines their role very specifically in assisting with certain aspects of dying. – The EOLD’s scope of practice includes what she is skilled at within the parameters of ‘non-medical support’. So that might mean taking your dog to the groomer. It might mean a marathon scrapbooking session. It might mean doing rituals to provide emotional and spiritual comfort. Or using crystals and essential oils to promote a feeling of wellbeing. Or doing energy healing for the relief of physical/spiritual/emotional pain and discomfort.

EOLDs endeavor to work in conjunction with hospice teams, palliative care teams, doctors, churches, hospital staff and family units. There is no such thing as ‘too much support’.