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’.

The Elephant In The Room Is Dying

Talking about death and dying is considered taboo. It is as if we have this belief that we will manifest it just by speaking of it. This is no more true than speaking of the sunset causes the sun to dip below the horizon.

Death comes for all of us and yet even that is misleading. Death is not something that comes for us, but that which walks with all of us our entire lives; we merely choose to deny its presence.

Death has been a topic we cover on average once a week in our household; everything from a passing joke about who wants to go first, to a deep conversation about end of life care. I realize, of course, that we are not the norm. 

But we could be – we should be.

Most people when they consider their end of life, discover they are more afraid of they dying part than the being dead part. 

Dying is the elephant in the room. 

With the introduction of hospice and palliative care starting in 1974, we have been cautiously bringing the elephant out from the closet and actually acknowledging it in the corner of the room. With the introduction of end of life practitioners, like sacred attendants and end of life doulas, we are calling the elephant by name to join us in the middle of the room.

Religions refer to ‘life after death’ and ‘eternal life’, which is not a bad perspective. However, focusing on the spiritual eternal life exclusively, often provides a wall of mirrors enabling one to ignore the necessary physical death that segues to that spiritual eternal life. It is a disservice to talk of one without talking of the other. Indeed, this perspective even bypasses the inevitable spiritual and emotional work of dying before the death.

Medical professionals often present treatment options in a ‘this or that’ formula. “Do this or die”, the implication being that “if I do this, I will not die”. Death is presented as an opponent to be overcome in battle at any cost. 

But there comes a point in everyone’s life, when death wins. 

Would it not be better to hold the truth every day that death will come? Would it not be better to live every day with the truth that one day we will have to surrender to death? And that holding that truth might give deeper meaning and richer context to the life we live, up until we die? And wouldn’t that start best with conversations long before we are given a terminal prognosis? 

The message of death is around us from the moment of our birth. Each sun setting on a day is a death. Each new season is a sun setting on a phase in the year. Each New Year’s Eve is a societal sun setting on a year. Each birthday is a personal sun setting on a year. Each death of a loved one is a death of a part of ourselves, and of our life as we knew it, sometimes. Each illness -small or tragic- is a reminder of our mortality.

Acknowledging the presence of death throughout our lives brings a sweetness to each day and relieves us of regret during our dying.

Seeking out someone like a sacred attendant or end of life specialist, to facilitate conversations about end of life choices, long before a diagnosis or prognosis, can allow exploration of alternative treatment options, either along side or in place of traditional ones. It can alleviate making literal life and death decisions in the midst of a life or death crisis. 

It can also result in sharing some of the most real moments of your life with your loved ones.

A daughter said, “we’ve never been here before.” Individually, we have limited experiences with death and even fewer experiences with dying, because in recent times it has been hidden away in hospitals and healthcare facilities rather than in the home.

Our ancestors taught their children that death was a part of life, because they took care of their own at home. Doctors made house calls. Hospitals were reserved for invasive interventions. Homes were built with parlors that were used to wake the body. Mourners were taken care of as well with neighbors tending to the fields of widows and bringing food. Outward symbols of mourning, like dressing in black, indicated to strangers, ‘understand I am grieving’.

That is all changed now.

Today death is seen as a medical event to be avoided, opposed or at least postponed. “Not today” always seems to be the thought, yet in a world where being present and living in the moment is being promoted, ‘today’ is all we have, so at some point, that ‘today’ will in fact, be today.

End of life practitioners have vast experience with many types of dying and death. Drawing on that experience can be priceless to you as you navigate these waters. Turn to palliative care and hospice professionals for end of life medical support. They can help you determine the appropriate course for managing the physical aspects of terminal illness. They also have support staff like chaplains and social workers to manage some of the spiritual and psychosocial aspects of terminal illness.

But not all deaths result from terminal illness.

A son recently said to me, “If someone had told us there was only a 30% chance of survival for my 80 year old mother, we would’ve made different choices. Why didn’t anyone tell us six months ago that this was the beginning of the end? We were robbed of the opportunity for six months of quality time.”

They had four days on hospice. 

Would it have been better for someone to point out that the ability of an 80 year old to undergo aggressive interventions for declining functions was not optimal? Would it have been better for someone to point the way toward six months of ‘last days’ filled with bucket list checkmarks and quality memory making?

The other day a hospital chaplain dismissed the need for my ‘services’ as an end of life doula at their facility because they have an affiliation with a hospice. (Please refer to this page for further information. We seek to complement, not compete. https://willowsongmedicine.wordpress.com/home/ )

In the July 6, 2019 update of the article, The 4 Common Myths About Hospice Care, Angela Morrow, RN writes: 

In 2015, the median length of service for hospice patients was 23 days. This means that of the estimated 1.6 to 1.7 million patients who received hospice services that year, half received hospice care for less than 23 days, and the other half received it for longer than that. In fact, the average number of days a patient received hospice care in 2015 was 69.5 days. 

The Dying process takes time. Because of the highly skilled care that hospice workers can provide to their patients, hospice proves most effective when the caregiving team has time to deliver it. Patients and their loved ones need support, information and medical care. Social workers and chaplains need time to work with patients and their families to bring them to a place of acceptance. Nurses and doctors ned time to optimally manage the patient’s symptoms. 

So, let’s look at exactly what that means in quality time. 

The criteria for hospice admission is a prognosis of six months or less to live. So why is the average stay just 69.5 days? 

In and of itself 69.5 days is not a long time. It is just over two months. Of the long journey many take with a life limiting diagnosis -some spanning years, others months- two months is nothing.

Many do not go into hospice as early as they could because they see it as ‘giving up’. Thus, many – if they’ve even heard of hospice – don’t choose it until they understand that death is imminent. By this time the symptoms of pain and discomfort have taken their toll. There is no opportunity for quality time with loved ones while you are in a state of suffering. 

In their struggle, they haven’t been fighting the disease, they’ve been suffering the disease. By the time the hospice or palliative care teams come on board to manage symptoms and relieve that suffering, the worn out body relaxes and sleeps for the first time in a very long time. 

The time and energy that could’ve been spent taking trips, having last conversations, writing memoirs, saying good byes, enjoying gatherings and celebrating a life well lived has instead been allocated to fighting the side effects of a treatment that did not deliver on the implied promise when the doctor said “do this or die”. 

Because the doctor never said ‘you could do this and die anyway’. 

Now you are (on average) 69.5 days – 9 1/2 weeks – from death once you’ve entered hospice. But those 9 1/2 weeks are not 100% full consciousness. It will take at least one week for the medications protocol to catch up to your pain and symptoms. Perhaps two. There is a lot of sleeping during this time.

Now you’re down to 7 1/2 weeks. People do not often (though it does happen) stay alert and communicative up until the moment of death. Dying takes time. The Hospice Patient’s Alliance states: 

There are two phases which arise prior to the actual time of death: the “pre-active phase of dying,” and the “active phase of dying.” On average, the pre-active phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days.

So, now you are down to 5 weeks of possible quality time and again you must allow for decline over that time. While at the beginning of those five weeks you might be alert 6 hours a day, towards the end of those five weeks you might only have 1 hour a day that you feel up to engaging. So, now we are down to hours…

I think you get the point. This is not the recipe for an ideal empowered transition. 

But you might say, “no death is ideal”. Well, let me ask you this: If you accept that your life on Earth has an end time, and that end time is called death, how would you prefer to die? 

Do you envision yourself physically drained, exhausted and unable to communicate the thoughts and feelings of your heart or engage with your loved ones? Do you see yourself connected to tubes and machines or to your loved ones? Do you see hospital staff, sterile environment and procedures, or your family and friends in familiar surroundings? 

I once asked someone what kind of death he envisioned. He said, “fast and painless…but I don’t envision it.” I asked then how he decided what kind of death he wanted, “from seeing the deaths of others.”

There is a cost to every treatment. Sometimes that cost is money. Sometimes it is your hair. Sometimes it is quality time. Sometimes it is just time. There is never any guarantee that an aggressive treatment will give you more time. In fact, aggressive treatment not only impairs quality of life (even temporarily), but it often hastens death.

Just as everyone has a birth story that was written by their mother’s choices regarding pain medications, attendants and location as well as natural phenomena, so too are our death stories written.

There are a million choices between receiving a life limiting diagnosis and the moment of death; each choice is a page in your death story. 

You can’t truly write your own narrative, unless/until you embrace the fact that this Earth adventure culminates in death. Unless/until you are aware of all the options available to you. Unless/until you acknowledge all possibilities.
Unless/until you start having conversations about what resonates with you and what doesn’t. 

Conversing and documenting your death vision years ahead of time, just like a will, relieves you of making those decisions under duress in a time of crisis. More importantly it relieves your loved ones of having to make those decisions for you under duress in a time of crisis.

But if you just can’t imagine doing that, then at least consider utilizing resources like end of life doulas when you have been diagnosed with a life limiting illness or have a significant decline in functioning; and palliative care and hospice when given a terminal prognosis. 

Special note to doctors:

Please, be honest about probable survival rates and the quality of life costs related to the treatments you are suggesting.  

Giving your patients and their families the full picture, is the most honorable thing you can do to enable them to make truly informed decisions. Do not rob them of four months of quality time for six months of extended suffering. Or worst, for two months of suffering.

Do not think that “hope” means four months of suffering aggressive treatment before death, instead of eight months of quality time while nature takes it’s course. 

Explore all possibilities when you have to deliver a life limiting diagnosis. Explain the pros and cons to “doing everything”, “doing something” and “doing nothing”. Explain all the costs -mentally, emotionally, physically as well as financially. Explain that hope may be for survival in the beginning, but for peace in the end – and that is still hope. Explore all possibilities means having a plan b and a set point at which plan b might be enacted. 

And if you cannot comfortably do that, be comfortable enough to bring in someone like an end of life doula to facilitate that.

Patients are not problems to be solved. They are not riddles you must figure out. People are social beings who thrive best, in the worst of situations, with open communication and the support of others. If they are kept in the dark, how will they get the support they actually need? Your patients depend on you for the truth to make the best choices for themselves. This is their only death. You owe it to them to give them all the information as soon as you have it. Remember that while they are not your only patient, you might be their only physician. 

You are part of their death story (even when they survive and go on to die many years later), make sure you are an enhancement to it. 

There are no losers when someone is referred to hospice early. There are no losers when palliative care is consulted right from the beginning. There are no losers when a death plan isn’t needed for several years. There are no losers when end of life doulas are facilitating conversations and memory making a year before someone is actively dying.

Conversely, no one wins when we prolong death by sacrificing quality of life. 

If this resonates with you and you have been diagnosed with a life limiting illness, or a decline in health status, print this out and take it to your doctor as an indication that you want to have an honest conversation about your care.