What The Lack Of End Of Life Planning Really Costs

I want to share a deeply personal story.

At the time of his death my daughter’s father and I had been divorced for four years.

During our 23 year marriage, because of my career, we always had open discussions about dying and death. We were open with our daughter about death, never shielding or protecting her, but instead arming her with coping tools and information.

Those conversations included directives regarding limited aggressive treatment, as well as life ceremonies and general care wishes. We had watched people fair poorly with chemotherapy and that was specifically something he had voiced against.

I had remarried, while at the time of diagnosis Allen remained single, but dating. We remained friends and much of my belongings remained in storage at the home we had once shared, including our daughter’s childhood memorabilia.

He was an avid ‘health nut’, so when he was diagnosed with stage 4 lung cancer in November of 2013 we were all stunned. Almost immediately he got engaged, with a projected date a year out.

He started chemotherapy treatment and began to decline swiftly. His fiancé kept his phone and isolated him from his family as much as she could, but needed the oldest daughter’s cooperation to sign for medical procedures when he was no longer able to due to the development of a rare secondary cancer of the spinal fluid that spread to his brain causing seizures and cognitive impairment.

My daughter was called to the hospital in April, 2016, because the outlook was not good. I ended up meeting her there the next day. We stayed a few days and had some good conversations with him despite his disorientation and intermittent incoherence. It was clear he was tired; like tired with a capital T. My daughter and step-daughter (who had been estranged most of her life) discussed their wishes for their father and decided on a plan of care, because it seemed as if his fiancé was not vested in his health, but his wealth.

Two hours after we left his eldest called to state that the fiance´ presented her with a family consent to marry. She called my daughter and they decided not to give consent. If their father had intended to marry, he would have done so urgently upon receiving a likely terminal diagnosis of stage 4 lung cancer. He would not have put it off for a year.

Apparently, however the eldest daughter was persuaded to give consent after receiving ‘assurance’ that a Will was made. She did not ask to see the Will, if she had she would’ve immediately recognized her father’s signature had been forged, badly.

In addition, to forging the Will, the woman obtained Power of Attorney during the same time period. She changed the beneficiary on his retirement accounts. She got a judge to marry them with the familial signed consent form. Lastly, four days before he died, while he was in a coma, she used her POA to add her name to the deed of his residence.

The memorial service was arranged with little to no input from the daughters. It was not at all representative of the man we knew. Calls and texts to the widow went unanswered. I was never able to retrieve my belongings or that of my daughter. My daughter was not given the opportunity to receive any of her father’s belongings and despite being named in the forged Will, did not receive anything, though her sister and her cousin did.

All of his belongings were reportedly sold or given to unnamed individuals, not family, including a car that he promised to our daughter.

Turns out you can do a lot of illegal things, including forging a will, and unless someone has money to contest it, you get away with it.

This widow lived off the insurance and pension for a year and in that year married someone else.

Granted this is an extreme case, colored by the shadiness of a true gold-digger, but it could have gone so differently had he completed an end of life plan ahead of time.

These are just some of the things he had control over at one point:

  • completing a Last Will And Testament when of sound mind
  • establishing Health Care Directives including Medical Power of Attorney and Living Will
  • creating emotional estate planning documents
  • complete an end of life plan
  • pre-planning Celebration of Life ceremony
  • completing legacy projects

Regarding end of life planning, many people take the position, “I have time” or “I don’t care, I’ll be dead.” It is important to note how our decisions, and especially our lack of decision making, can wreak havoc on our loved ones and complicate their grief.

To Tell, Or Not To Tell The Children, There’s No Question

It is our job as parents to protect, nurture, and guide our children into whole human beings. It is our responsibility to do this to the best of our ability. If we do it right, the parenting role will take us outside our comfort zone more often than it doesn’t. Sometimes stretching us into improved versions barely resembling the old.

We know it isn’t best to take the easy way out and give in to whining, or temper tantrums, or tears when enforcing bedtime, curfew, or homework. We establish house rules and expect there will be resistance in the teen through young adult years, while we live under the same roof. Still, we know that it is best not to give in just because they will be upset.

That same truth appears here – where we are talking about a parent’s terminal diagnosis or life-limiting illness.

Navigating the rocky terrain of life-limiting illness and terminal diagnosis is a challenge none of us fantasize about. Most don’t spend time thinking about how to handle such a situation in advance. There’s no play book, no manual, and certainly no instruction sheet for reference. When it comes to our kids, though, we have to get it right – and we only have one chance. What we give them during this time will shape who them become as adults.

“We’re Not Telling The Children”

If this is you, this your fear talking. You want to keep things as they are, falsely, in an effort to deny what is happening. In an effort to hold on to yesterday for one more day. But it isn’t fair to your children.

I know you think you are doing the right thing, but you are doing the easy thing. There is nothing on Earth harder than breaking your child’s heart. You tell yourself you are doing the right thing, by delaying that broken heart as long as you can. What you are really doing though is postponing that broken heart until such time as you are either gone, or too weak to be able to support their processing.

You don’t tell the children so you won’t have to deal with their pain – not so they won’t have to deal with yours…that’s not what we do as parents.

Now is when you’re children need to know. Not tomorrow or next week, because I promise you tomorrow, or next week, or the week after will bring the day you most dread when it will be too late.

Tell them when you are diagnosed. Let them be a part of your healthcare and support team. Including them early on prevents them from being at the ‘can’t we do something stage’ when you’ve already determined there isn’t. You don’t have to have all the answers when you tell them. The fact you let them in on the process will allow them to deal with whatever comes along.

You are leaving them and that is inconceivable. However, they are going to have to live a whole lifetime without you. They are going to need every second possible to grasp that and to gain the tools necessary to make it through some important milestones and intense challenges.

They will feel powerless in all this – much like you – so give them opportunities to feel empowered. Give small children small jobs, like being “Mom’s water pitcher manager”. Give older children tasks that play to their strengths like making Dad’s favorite play list or a favorite sandwich. Allow them to feel they serve a purpose in supporting you.

Give them space to process and opportunities to express their fears, feelings and faith. They will need help navigating these emotional waters, give them as much time possible to do that by telling them as soon as possible. They need you, now more than ever, in order to cope with losing you. After all who better to teach them?

When you keep the truth from children you deny them the maximum time possible to process their anticipatory grief and to cherish their time with you.

“They’re Too Young To Know What’s Going On”

No child is ever too young to know when something is changing. Even infants are affected by grief, as they pick up on the emotions and energy in the environment and in their caregivers. They will need extra soothing, comforting and nurturing to calm their distress. Infants and toddlers need extra physical comforting because they cannot process linguistically yet. They might need to be held more. They might need extra reassurance about mundane things. They’ll need to sleep more. They’ll need you to honestly deal with your own feelings because they will sense the discord if you are not.

The older the child the more aware they will be of the non-verbal cues in the household. No, your three year old will not process the same information as your sixteen year old. They still need to be part of the process, though.

Why Tell Them When It’s Only Going To Hurt Them?

Because every child knows the temperature in their own house. Every child I’ve ever worked with, knew things were bad long before the divorce papers were filed. Yet, every parent felt so sure that ‘the children didn’t know anything’. So, many children end up in therapy for ‘behavior problems’ only to find out they are lost in an emotional forest because they experience congruence: “I sense something is wrong, but everyone says it’s all fine.” The truth of their experience clashes with the lies of adults and creates chaos internally. If you ever wondered how ‘gaslighting’ got it’s start, here it is.

If this is true, then it is more true when a parent is terminally ill. Our children are comprised of our blood and DNA. They know things about us. They know when we are not being honest and truthful. They know when we don’t feel well. And most of all they know when we are afraid.

It’s more than ok to share that with them – it is necessary for their emotional wellbeing.

When we are diagnosed we are not the only ones…everyone else in our life receives the diagnosis as well.

When we don’t share the truth with others we take away their rights. Yes. Their rights. Their right to support us as they desire. Their right to take care of us like we’ve taken care of them. Their right to have as much time possible to process feelings and anticipatory grief. Their right to share this experience with us. Their right to their own experience of our dying and death.

When we don’t share truth with others we take their freedom. The freedom to choose how to say good-bye, how to spend their time, and how to grieve. We rob them of the opportunity that comes with time, too. The opportunity to share the words on our hearts, to make lasting memories, and to bear witness to and for one another.

When we keep the truth from children we are not shielding them, we are isolating them.

If you or your spouse has been diagnosed with a life-limiting illness or has received a terminal prognosis, you and your kids have already been dealt a crappy hand. Don’t make it worse by stealing precious time from one another because it is painful. It’s going to be painful no matter what. You can’t control the wounding, but you can control the bleeding, so to speak. Every decision you make regarding sharing, or not sharing, the truth with your kids impacts them in one of two ways: either helping the healing process or complicating the grieving.

Here’s something else.

Tell the children because they already know. And if they already know, then they also know you aren’t telling them the truth. And if they know you aren’t telling them the truth, they can’t trust you to tell them truth in the future.

And that is the most damage you can inflict in a parent/child relationship.

We cannot protect our children from a diagnosis. We can only help to arm them with appropriate tools to come through this to the other side.

This loss is something they will walk with the rest of their lives. It is important we do this one thing right because there are no do-overs. We only get one chance to say good-bye.

Jade

Holistic Support Specialist, Interfaith Minister, First Responder Chaplain, Shaman, Energy Healer, Licensed Social Worker (ret)

A Dialogue About Death

Every story ever written has a beginning, middle and an end. Every author considers the end when first sitting down to write a storyline; However in the greatest story an individual will ever author, the end is often left unscripted.

We can’t write death in on our calendars and begin to plan when it seems ‘timely’. On the day we are born our death is written onto our calendar in invisible ink.

Modern day society chooses to approach death as if acknowledging it is morbid, preparing for it hastens it and accepting it is giving up.

Talking about your end of life care preferences when death is a remote possibility, supports decision making about end of life care when death is a probability, and promotes healthy coping during end of life when death becomes an inevitability.

In December 1974, my uncle was home from his work as a missionary priest in the Amazon, when an aortic aneurysm ruptured and he died in his sleep. I was nine years old, in the kitchen, as the discussion of burial arrangements took place and there was question about where he should be laid to rest. I said I knew where he wanted to be buried.

Every year my uncle hosted our family reunion on the grounds of the Villa Redeemer Monastery in Glenview, Illinois. On this property was a small cemetery and on one of our walks through the grounds that summer, my uncle told me he would someday be laid to rest there.

Because he shared that with me, I was able to share that with my mother. It was a small conversation that made a big difference to my mother in her grief.

Perhaps because my grandmother grew up on a farm where death was recognized as a part of life; Perhaps because my mother’s brother died at four years of age; Perhaps because my mother grew up during WWII; Perhaps because my own father died when I was three…perhaps for all these reasons, death was not a taboo subject in my house growing up, nor has it ever been a taboo subject in my own home as an adult.

Embracing mortality has emotionally prepared me to make life and death decisions in unexpected moments. This preparation does not make decision making easier – it does however, make it less complicated.

When we live in denial of mortality we create an illusion that creates complications during times of crisis. It requires that our psyche do some serious catching up in very little time, and oftentimes there isn’t enough time to actually catch up.

The internal dialogues might look like this:

Prepared: (death is a real possibility) “No. No. NO! I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready. I’ll never be ready. I can’t make these decisions. I don’t want to make these decisions. We talked about what to do, but I don’t want to.”

*breath*

This isn’t about me. It’s about Mom and living life on her terms. It’s so hard to imagine this, but Mom has always been clear about what she wants.”

(death is a probability) “I don’t want to believe that I have to do this, but I know what Mom wants. She’s told me all along. She doesn’t want to merely exist. She doesn’t want to be on machines. She doesn’t want to be a burden. She wants to live life on her terms. If she can’t be an independent active participant in life, she said she didn’t want to prolong her death. She prepared me for this, but my heart is breaking.

*breath*

I don’t want her to suffer for me. I want her to be peace-filled.

(death is inevitable) “I’m sorry Mom for the things I did that hurt you. Please forgive me, hurting you was never my intention. Thank you, for teaching me what friendship means. I forgive you, for all the things I was ever angry about. I love you.”

*breath*

Mom, it’s ok to let go, if you need to. I’m here. I’m right here.”

(death comes)

Unprepared: (death is a real possibility) “No. No. No. No. NO! I won’t believe it! We have to keep fighting. You have to keep fighting, Mom. You are a survivor! You got this! Yes, keep her alive at all costs. Don’t give up on her. It isn’t her time yet. I’m not ready yet.”

There has to be something else we can try. Why is she getting worse instead of better? What are you doing?! Why aren’t you helping her?”

(death is a probability) “Mom, I know you are tired and suffering but you have to keep fighting. This isn’t over yet. You still have so much to do. I need you. Your grandchildren need you. I am not prepared to say goodbye so you have to keep fighting, ok?”

You are not a quitter! Don’t you give up on me!”

(death is inevitable) “I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready.

I’ll never be ready.”

(death comes)

I didn’t even have the chance to say good bye…”

Preparation is not morbid. It does not hasten death. It needs to be seen as the natural order of authoring our lives.

Just as preparation does not manifest death, it also does not guarantee the circumstances of our death. We cannot foresee details, but we can verbalize the atmosphere we’d like it to have. Because at birth our death is already added to our ‘to do list’, it is appropriate to have ongoing open conversations about what we might want to include and exclude from that atmosphere.

Amidst the COVID-19 pandemic our mortality has never been more undeniable. Take this opportunity to begin having conversations, exploring your fears, beliefs and hopes about your own death. Tell your loved ones what your preferences are to ease their emotional burden when the time does come. Your loved ones may not have certain choices regarding your end of life care, but at least they will have your Voice as guidance in making the really tough ones.

It may not come during this pandemic – we all hope that is true – but clearly, death is happening all around us now. We might still live in fear of it, but we can no longer deny the possibility, probability and inevitability of our mortality.

It is in embracing the existence of our death that our best living begins.

The Importance of Emotional Estate Planning

True or False?

“I’m not sick. I have plenty of time to do my emotional estate planning.”

False.

While it is never too late to start emotional estate planning, it is also never too early.

Emotional estate planning should not be reserved for those suffering a terminal or chronic illness who are nearing death.

Just think back on the deaths you have experienced. How many were unexpected or were the result of a rapid decline in health?

As I reflect back on the many deaths of family and friends over my lifetime not one of them did much, if any, emotional estate planning and with the exception of my grandmother and aunt, all were rather swift and unexpected deaths.

My father succumbed to a brain aneurysm at age 46. My uncle, to an aortic aneurysm, also in his 40s. My aunt died in a car crash in her 30s. My mother died over the course of one week at the age of 74 of chemotherapy poisoning, just six months after a breast cancer diagnosis. My friend’s husband died almost instantly of a heart attack in his 50s. My friend died just a few months after a diagnosis of ovarian cancer in her 40s. My ex-husband, a non-smoker, died at age 56, six months after being diagnosed with lung cancer. While he underwent chemotherapy he developed a rare secondary cancer that spread to his brain.

This is just a sample taken from my own life, but out of eleven deaths only three were a natural result of a long well lived life. Not much time or opportunity for getting affairs in order, much less for crafting last words, goodbyes or making last memories in the last month of their lives.

My mother and my godmother were the only ones who really did any emotional estate planning and that wasn’t all that much, honestly.

My goal is to prevent as much emotional, spiritual and suffering as possible. I know how much suffering emotional estate planning can relieve. Unfortunately, most people still believe they will ‘know’ when their time is ‘about to come’ and have time to prepare.

Here’s something no one seems to remember to mention…

When you’ve received a diagnosis with a terminal prognosis, the life expectancy they give you is not a guarantee.

A prognosis is not a contract.

We’ve all heard those wonderful stories of someone being given six months to live and they went on for another five years. Those are exceptional. Emphasis on ‘exception’. The stories that are not passed along but much more common, are the ones who are given three months and only get three days.

Most importantly though, life expectancy and prognosis refers only to the state of being physically alive. It does not indicate the quality of that life. For instance, one may be given six months to live, however the last two months may be in an altered cognitive state at best, and unresponsive at worst.

The benefit of emotional estate planning is the opportunity to provide your emotional support to your loved ones before, during and even after you’re death.

How many times have you said ‘I wish I had one more…’, after you’ve lost a loved one? One more story. One more “I love you.” One more something? Emotional estate planning enables you the opportunity to set up these sorts of bonus ‘one mores’ by prompting you to make choices, take action and express yourself.

There is so much benefit to your bereaved when you do emotional estate planning, however you are the one who benefits the most!

By accepting our mortality, before it is knocking on our door, we can deepen our experiences of life, gain perspective and even change the trajectory of our lives. We gain insights not otherwise available to us when we are living in denial.

It puts things into perspective and offers us the opportunity to forgive, make amends and even repair damaged relationships. More importantly, it enhances relationships that are already awesome by strengthening our bonds in sharing profound thoughts and fears.

Taking the opportunity at any age to acknowledge death as a constant companion only brings more depth to our living. As we age however, emotional estate planning becomes increasingly necessary because death falls more into our direct line of sight rather than in our peripheral vision.

Ok, great, you now understand how important it is to do emotional estate planning, so now what?

You could begin by scouring the internet for end of life planners.

Some resources are simply books of checklists and blank lines to record where a document can be found. Others have thought provoking topics to reflect on.

A checklist is fine for grocery shopping. It’s great a tool for not overlooking something. Thought provoking topics are better. They prompt you to dig deeper than the checklist so that you are more prepared emotionally than if you simply filled out a checklist.

What neither of them have though is the availability to support you in processing the emotions that come up when you are doing this kind of planning.

And the feels are real, my friends.

There are feelings of failure, disappointment, worry and fear just to name a few. There are also feelings of overwhelming gratitude, appreciation and love. What do you do with all that? How do you process it and not allow it to overpower you? How do you transform those feelings into actions and gifts that will ease the grief of you and your loved ones?

By doing it with an experienced guide.

Initial Inventory Planning Session

90 mins.

That’s all it takes to get a good portion of the basics of the necessary planning completed. Included is your copy of the Healing Rites of Passage End of Life Planner. This planner is not available anywhere else.

The session will quickly identify where you are lacking in legal, financial, social, medical and emotional preparation as well as facilitate and complete some parts of your plan.

The session serves two purposes: 1) To get the basics of emotional estate planning completed. That’s self explanatory. At the end of the 90 mins you will have your advanced directives outlined at the very least.

At most you will have had a deep conversation outlining exactly your intentions for the end of your life care, whenever it should happen to be. You will have laid the first steps to making your family’s job of memorial planning easier.

…and the second goal…

2) To build a relationship with your end of life specialist. This is less obvious. When you build a relationship with an end of life specialist by initiating your emotional estate planning, that specialist becomes an intimate part of your life. That relationship can then be drawn upon down the road when you are in crisis. Because when you are in crisis you are automatically surrounded by professional strangers (or strange professionals, I suppose).

How about a familiar professional with all the experience necessary to help you sort out the jargon and double speak? How about a familiar professional who can remind you of the things that you decided were important when you weren’t under duress? How about a familiar professional who can remind you of those things to relieve your panic? How about a familiar professional who can ‘be the strong one’ while you and your family have that much needed break down?

It starts with 90 minutes, but lasts the rest of your life.

The Power of Presence

It was a Monday, like any other Monday and I had a new patient to assess. Talking to the hospice nurse before I made my visit I learned that Violet had been admitted on Friday in stable condition was expected to be with us a few weeks. The nurse thought I would find her delightful. Violet lived in an extended care facility and had no local family.

I brought music cds and a player with me to all visits in extended care facilities. I find that quiet reflective music helps transform facility space into sacred space so that what needs to happen can happen.

When I arrived at Violet’s room I found a very different woman than the nurse described. She was not responding to my voice or my touch. Her face was pinched, grimacing and pale. She was restlessly picking at everything and her breathing was shallow.

I changed gears quickly as I realized that she was actively dying and I notified the nursing staff immediately of the change in condition…then I got to work.

I set up the music and rearranged some furniture in her space so that I could be closer to her. I provided some energy healing to promote physical and emotional comfort and then began to read to her in a soft voice.

I have a booklet of poems that I’ve written over the years about dying, death and grief. They seem to speak to matters deep within that the dying sometimes have a difficult time addressing.

As I read the poems and did the energy work, I saw Violet transform. Her face that was pinched, softened and had a glow to it. Her hands that were restless and picking were now resting calmly at her sides. Her breathing was shallow and slow. Her whole presence had shifted by the time I read the last poem.

I spoke to her with reassuring words of intuitive compassion and support, after which I sat silent and provided energetic support while the music played and she did her internal work.

Suddenly, Violet sat straight up with a smile on her face and outstretched her arms. Her eyes were open and she was definitely looking at someone as she wrapped her arms around her chest as if pulling them in for a hug.

She laid back down and a few short minutes later she took her last breath.

This experience was so inspiring to me that I wrote another poem to add to my booklet. The last line of which reads, “her last breath promising much more than her first.”

When I called to notify the hospice nurse she was completely surprised by this rapid transition.

Death is not just a medical event and we do a disservice when we treat it as such. I read recently that death is a ‘physical expression of a spiritual experience’ and I find that to be very accurate.

I often tell families that dying is holistic: mind, body and spirit. And that all three need to be on the same page to have a peaceful experience. Sometimes two can be on one page and the third be on another and death is prolonged in an agonizing fashion.

My experience with Constance was much different than with Violet. Constance was also admitted on a Friday but was not expected to live until Monday. Monday came though, and she was still with us. When I visited her she was alert, but not eating or speaking. She drank only sips of water through a straw.

The family thought she was waiting for the youngest child to come in from out of town. While everyone was talking about Constance’s death, no one was talking to her about it.

I encouraged the family to begin to share the things on their hearts related to their grief over the impending loss. This was quite difficult for most family members as they had a deep belief that it was morbid to “talk like that.”

I helped them find wording that fit into their belief system, but still allowed the sentiment to be shared. The youngest child did arrive from out of town , but to everyone’s surprise Constance held on.

In fact, Constance even woke up out of her unresponsive state, able to speak just a few words and answer questions with yes or no. This went on for a few weeks before Constance finally took her last breath one night while everyone was asleep.

What was it that finally allowed Constance to let go? We will never know, but I think that by speaking the words on their hearts, Constance received what she needed in order to transition at last.

I know I make a difference in the lives and deaths of those I touch. I don’t have a marketing plan or advertising copy. I just have my heart and my need to be of service. But somehow I need to share my stories so that those who need me know I am available.

What I do as an end of life specialist is not usual, customary, formulated or predictable. I can’t promise you anything other than authenticity and compassion to serve your highest good.

But I do promise to be there every step of the way.

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.

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’.

Why I Am Not Called A Death Doula

‘Death Doula’, while I love alliteration, has the feel of ‘Angel of Death’…and that couldn’t be further from the truth.

While the end of life doula profession is being modeled after birth doulas, that is where the similarity ends. A birth doula begins her work at the birth. There would be an introductory meeting, but her work really begins at the birth and ends after postpartum follow up. So the title ‘birth doula’ is fitting.

Ideally, for me as an end of life doula (EOLD) my work begins well before death, hopefully even years, by assisting individuals in identifying the key components of what they feel would be a ‘good death’ for them, so that they can make healthcare and lifestyle decisions accordingly along the way.

This foundation plays an important role in the decisions regarding treatment when a life-limiting diagnosis or prognosis presents. When identified, all decisions regarding treatment can be weighed as either something that supports these or does not support these.

For instance, if a key component for someone is being able to spend quality time doing ‘last activities’ with family then continuing to pursue aggressive treatment past a certain point, when there is only a small chance of survival would not likely allow for the stamina needed to participate in a lot of ‘last activities’.

However, if a key component for someone is to “go down swinging”, then pursuing aggressive treatment until the last moment might be the right course of action for them.

But you can’t know these things if you aren’t examining the topic ahead of time.

No one wants to die. No one wants to admit someone they love is going to die. But this is a chapter in everyone’s life and our current model often has the author giving up their rights to pen their own chapter. We only get one chance to do this. There are no do overs and no rewind buttons.

I recall one individual who was diagnosed with stage 4 lung cancer ending up with a death he never dreamed for himself. I was not the doula, but merely a bystander in this situation and never felt so helpless. After the first chemotherapy treatment he began to decline very rapidly. More so with each treatment he sustained. He was leaving behind two young adult daughters that needed quality time with him, but his energy was being depleted by the effects of the chemo.

His end of life care was being driven by his significant other because he had not had end of life conversations earlier, had not written down his wishes, had not identified his key components of a good death and he was less and less able to make his wishes clear as his brain began to swell.

Having end of life discussions is not morbid; is not tempting fate; is not bad juju; is not inviting death; is not jinxing anything. It is a way to have control over a time in your life where you may not feel in control.

As an end of life doula my job is not just about the moments of imminent death, it is about maximizing quality of life until transition. It is about giving control back to someone who may have handed it over to someone else, be they the medical profession or their family. It is about protecting their interests and preserving what is valuable to them.

It is about facilitating early conversations, encouraging someone to apply their lifelong decision making process to end of life situations, documenting informed choices, encouraging questions, planning last activities, assisting in legacy projects, providing comfort, providing an objective listening ear, a shoulder to cry on, a safe space to fall apart and facilitating movement from a place of scared to that of sacred.

It is about reminding people of their power when they feel most powerless.

This is about more than ‘death’. It is about more than the process of dying. It is about living until and through the transition. It is about exploring beliefs about whether or not ‘life’ goes on after death. It is about preparing rituals that ease spiritual discomfort of the dying and the anticipatory grief of their loved ones.

This is end of life work, not ‘death’ work. It is so so so much more than just death.

It is a most sacred part of life.

It’s Not My Death

1990 was the year of magical changes in my life. As is usually the case though, I couldn’t know it at the time.

I had been married a little over one year and my beloved grandmother had just died. I was 25 years old and working in a job that had nothing to do with my Life’s Purpose and the death of my Gramma left me depleted, devastated and depressed.

Just ripe for the Universe’s picking, I suppose.

I don’t even remember how I stumbled upon the new job as a Social Worker in a Valparaiso, IN extended care facility. I was to be responsible for the programming on the dementia unit, as well as the psychosocial care of the patients on the new dedicated hospice unit. My supervisor was ‘other worldly’ and introduced me to alternative non-medical modalities as a way to assist our hospice patients with pain control.

It was there that my end of life doula education/experience began, though -as I said- I didn’t know it at the time.

My work experiences served as fuel for some deep meaningful conversations between my husband and I about death and dying. As my career developed so too did our conversations around end of life issues. The topic of death was commonplace in our home and we clearly stated and restated the things we would want and not want regarding treatments and interventions.

As our daughter grew we included her in those discussions, too. She was four when I began to take her with me to visit hospice patients. She had a certain magic with patients who had long retreated behind dementia made walls. She was compelled to hold the hands of those who mere hours later would cross the Threshold.

We all lived our lives with the understanding that death was a bookend to birth, which gave us the wisdom to concentrate on the experiences between them.

The marriage ended in 2012 and like any family we struggled a bit to find a new normal. It was not easy, by any means, but we eventually found a place of harmony.

I would go on to remarry and my new husband and I moved to another state with my daughter, then 20 years old. My ex-husband and I maintained communication regards my daughter and often exchanged updates about our own lives.

On December 20, 2015 while back in town for a friend’s funeral, my daughter and I stopped in to see my ex-husband. It was then that he revealed that he had stage 4 lung cancer.

In the months that followed, a nightmare unfolded slowly all at once. The information he was giving my daughter contradicted the medical treatments he was consenting to. The woman he had been living with, now his fiancée, who at first seemed supportive, kind and compassionate became someone else entirely.

In late April my daughter was called to his bedside because of a decline. My ex-husband’s niece states he was calling for his ‘wife’, meaning me. My daughter called in tears and asked me to come. I did what any mother would do and hopped on the very next train.

Upon my arrival, my ex-husband perked up and began to proclaim his appreciation for me and stated that he did not know what he had when he had me. Over the next few days we would have meaningful conversations and in a private moment he gave me an apology I had long before given up on ever receiving.

That said, it was clear that his state of mind was altered at times. He had been having seizures which turned out to be the result of a rare secondary cancer of the spinal fluid that spread to the brain. While he was alert he was not always lucid nor coherent. This seemed to be ebb and flow with the timing of a medicine that was used to keep the swelling in his brain down.

As I stood in his hospital room it was very hard for me to remember that I was neither his wife, nor his end of life doula. I was simply there as the mother of our daughter and the step-mother to his first daughter. I had no legal rights. I had no rights at all. My place was simply as a guide for his two daughters, as they had all the legal decision making rights.

So I became their end of life doula, creating a space for them to be active in their father’s journey and to feel some sort of empowerment in a situation where they were feeling powerless.

Because the eldest daughter was local she was the one designated by the hospital to sign all consents for him.

As we all listened to the doctors we were clear on the fact that he was dying, so it was quite the shock when this fiancée of his, who had seemed compassionate and kind, suddenly turned into a different beast, and did not want to forego aggressive treatment. She was irrational and verbally aggressive. She began to stay away from the hospital for long periods of time.

In private moments my ex-husband would talk of acceptance and a lack of desire to pursue active treatment, but his thoughts and intentions were overpowered by his fiancée.

His only advance directive was the one we created when we had been married and now his competency was in question so having him sign a current health care representative form was not an option.

His two daughters agreed that seeking further aggressive treatment was not what he would want. Was indeed not what he was expressing he wanted.

My daughter and I needed to return to our home and we left with the promise to support his eldest daughter in decision making.

On April 27, 2016 we were about 2 1/2 hours away on the road when she called us to say that the fiancée gave her a consent form to sign so that she and their father could get married.

My daughter strongly objected and we all found it suspicious that this was not mentioned at all during our visit, but suddenly presented mere hours after we left. This woman’s motives were now suspect.

On April 29, 2016 she had him sign a printed-off-the-internet durable power of attorney, witnessed by a friend of hers. Then she forged his signature on a will, witnessed by a friend and her sister.

It was later discovered that on April 26, 2016 she named herself as beneficiary of his retirement accounts with another forgery.

On May 2, 2016 this woman managed to convince the eldest daughter that this is what her father wanted and she signed the consent for them to marry. A sitting Indiana juvenile judge performed the hospital beside ceremony.

On May 15, 2016 the now wife attended her ‘wedding reception’ without her husband because he was too weak and ill to even get dressed. He sat at home with our daughter at his side and later his other daughter joined them.

On May 21, 2016 she completed a quit claim deed, as his DPOA, transferring his house to herself.

He died on May 25, 2016.

My daughter and I had arrived on May 22, 2016. I was there strictly as support to my daughter. When we arrived for a moment he became alert, recognizing our daughter right away. The wife made sarcastic passive-aggressive remarks about how he had been non-responsive to her but perked up for our daughter. Then he saw me and gave me the same kind of greeting. This clearly angered the wife.

My daughter spent most of the next two days with him. Because of legal matters that were transpiring, the wife became hostile and my daughter and I both felt it best I not return to the home.

While she was there the wife would leave the home to run errands. My daughter would call me and we would Facetime as she laid with her father, being present for him, reminiscing, playing music, comforting him and giving him permission to go. In effect, our 22 year old daughter was doula-ing for him. And I was doula-ing for her.

In the afternoon of May 25, 2016, while his wife stepped out to get ice cream, our daughter by his side, he took his last breath. The details of that moment are her story to tell, not mine, so I won’t share that here. But know it was powerful and beautiful and full of love.

Since that time my daughter, my husband and I have talked often about how we wished it could’ve been different for her father. We talked about how we would’ve welcomed him into our home and attended to him. About what we imagine his vision of his journey would’ve been. We all wanted a ‘good death’ for him and while the last moments were precious, the months leading up to it were not.

I know in the marrow of my bones that this was not a death of his choosing, even though I have to accept it was the result of his choices. I know it would have been very different if we had still been married, or even if he had just not had this someone in his life.

But it wasn’t my death.

And that is the most important thing as an end-of-life doula we must understand. It is not our death. When we are asked to doula for someone we are there to support their decision making, not steer them towards particular decisions. Our biases are to be left at the door. We are not to push our own agendas, no matter how perfect we think they are.

Individuals must have autonomy in their dying, just as in their living. Their rights must be protected. In this case, while in the end he was taken advantage of and swindled, and we don’t believe he was directing the journey of his treatment, he made the earlier decision to have this woman on his journey.

Despite all of this, our daughter and I did everything within our power to allow him space for autonomy over his transition. We felt that was our duty as human beings who loved him. Not to push our agenda, but allow him to create his own. While we feel that he was not in control of his treatment, he certainly was in control of his last moments, choosing to leave when it was just him and his daughter.

It is hard for us to find the peace in it sometimes. We had such a beautiful vision for his journey, based on the decades of conversations we had. Because of our long history together, we believe we knew him better than anyone else. We believe we know what his ‘good death’ would’ve looked like given different circumstances.

But it was not our death and we have to find solace in the fact that we supported him when he needed it most, in the moments we had with him.

When you read end-of-life doula stories you hear some amazing stories that read like a Hallmark movie script; but that just isn’t always how it goes. It’s important to know that.

People are complicated and die the way they live. An end-of-life doula is meant to support the individual and their family (the ‘unit’) in a way that is harmonious with their situation. An EOLD enhances, they never take over, overshadow or override the individual or the family. They are meant to assist the unit in creating their own highest experience.

NOT to script or direct an experience of the doula’s imagination.

Yes, my daughter and I fantasize about a death we feel would’ve been ‘better’, but -again- it was not our death, so we have come to accept peace in knowing that we absolutely served our role in enhancing his death to the level allowed.

I would’ve scripted a different movie for his transition. What I would’ve scripted would’ve made my daughter’s healing of grief a bit less complicated. What I would’ve scripted would’ve been the stuff of Oscar winning movies. What I would’ve scripted…

…is irrelevant.

Being an end-of-life doula means I support the script of the one making the journey. It’s not my death.

~Jade