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.

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.

We're Failing Families

Are We Failing Families At The End Of Life?

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

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

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

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

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

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

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

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

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

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.