End of Life Literacy Protects Us All

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Let’s face it. Elder care isn’t ideal care. No one wants to age and die. We don’t like to hear about or see into the reality of aging, death, dying. Most of us don’t want to talk about it, much less know how to find ease in being with people who are facing the later stages of aging and death. The reality is, we have allowed medicine and politics to govern end-of-life, a sacred life event, with a bottom-line mentality. While we are facing the reality of an aging baby boomer generation which will impact systems and economies, maybe what life is asking from us as a culture, is to wake up to the reality of our mortality and what quality-of-life means to us beyond the great saviors of medicine, politics and economies.

Death is a denied but inevitable reality in our culture.

Even though the ever growing need for updated models of care, services and facilities for aging is a new and ongoing conversation in baby boomers, death has become the most denied event and undiscussable conversation in many countries. Yet the fear of death and its companions of speed, greed, impatience, indifference and lack of time for our loved ones causes us to avoid and miss our deepest needs for intimacy and authentic relating to each other, especially at the time of death.

While we are lucky that the Long Term Care and Nursing Home industry exists, and that it does such a wonderful service of providing care to frail elders whose families know not what to do at this vulnerable time of life, it is nevertheless an industry which stands to gain tremendously as a profitable business by learning how to really attend to dying people and establish the skill sets for authentic relating which increases a person’s ability to leave this world connected to their soul and expectant of connection with their own version of heaven or light. The care facilities for aging, however, reflect an intense and disturbing gap between our willingness to confront the intimate face of death directly and death’s myriad aversions and denials. 

In few places in the entire industry of long-term care (hospice being the only and stellar exception) do facilities offer specializations in skillful, alternative, holistic end-of-life care services, facilities and training. Nowhere do you find unique, stellar, irresistible death and dying  services showing up in the marketing, language and sales tools of the industry, much less in real quality death and dying services. 

Finding caregivers is difficult. Finding competent, loving, caregivers who are not afraid of death is nearly impossible. And even if you have all the money one could ever need as a consumer to purchase a five-star, stellar end-of-life experience to match stellar experiences we give ourselves at other times of life, no one can find it. The edge for learning and growing in the industry is to learn how to face death directly and skillfully and allow it to come back into profitable business and abundance of life. 

We have to realize that people will choose to have a high-quality exceptional experience at the time of their death just as they choose to have high-quality experiences during their active years in life. Why would we not do this if it were available for us to buy? At this moment in time ‘money can’t buy it’ because it’s not out there. High-quality, extraordinary end-of-life experiences aren’t in the market, however, if money could buy an irresistible end-of-life experience, it would. 

The adage, “money can’t buy love” is only true as far as it goes.

In the long term care business, love is actually one of the things that people want to buy for their families and it is what employees and caregivers most want to give yet are so unable to find time to do. Not because they don’t know how, but because the to-do lists include so many technical, medical, regulatory priorities other than loving, hands-on attention. By the time a caregiver would have a break from administering clinical services to give love to a dying person directly, the day is over and it’s time to go home and our loved ones are left lying in their beds starving for a person’s love, care, hands, heart, and attention. 

Hungry for love and comfort, scared and alone is no way to leave an aging, dying person, and it is the reason there is so much despair  in nursing home communities. Introducing the facts of death and dying alongside tenderness and inquiry to reduce fear of death is a primary objective in quenching  this despair. Most people are terrified of dying; this includes you, nursing home owners, your doctors, CEO’s of major corporations, garbage men, nurses, the president, CNAs, caregivers, supervisors, managers, and family members. The fear of death is rampant in our culture. Our fear of death is equal to our fear of the unknown.

Terry Tempest Williams writes about our fear of the unknown in her essay in Orion magazine. She writes about what we stand to lose as human beings when nature and all the life it contains. She notes how fear increases in our daily life when our connection to vast pure wilderness is destroyed. She writes about our need for the earth and its beauty. She talks about fear: She says,

“We breathe deeply and remember fear for what it is—a resistance to the unknown.”

What is more unknown than death. Nothing. It follows then understandably why so much fear exists around dying and how the denial of death keeps us from growing in our ability to face or attend to those who are dying. Fear disables us as caring companions. Facing and walking toward death allows us to bring healing and liberation to those who are leaving this earth.

Not giving comfort and care during a person’s dying process is a form of neglect that creates a rift in our souls. This issue-“the de-prioritization of loving attention to help people achieve a wonderful experience at the end-of-life” is truly a shame in the strictest sense of the word. Not being there to give comfort and assurance to dying people is like not giving food to a newborn. Just as we would never think to leave a newborn starving for food, we must learn to stay with the dying to give support as they move into the unknown.

Their resultant loneliness and fear come about in part by having designed services for  aging, death and dying care around a pure and strict adherence to death as a medical event and to the types of treatments aimed to keep people’s body alive at all costs while overlooking their hearts, minds, and souls. Death is not a medical event, but a sacred life event. It is a natural process and consequence of birth. It happens to everyone and its processes and mysteries surrounding it can be studied and become common knowledge. 

End-of-life care can be brought out of the closed-door approach and “life at all costs” methods that are dependent upon life-support machines and  brought into the light by learning how to recognize, inquire into, and handle the vulnerabilities of the stages and transitions which occur in the dying, no matter what illness they are dying of.

Quoting Tempest-Williams again:

“…When one hungers for light it is only because one’s knowledge of the dark is so deep.”

Conscious, compassionate care at the end of life will lighten our load as human beings and increase the real bottom line for everyone. Will we allow medicine and politics to govern end-of-life with a bottom-line mentality, or will we as a culture wake up to the reality of our mortality and our responsibility in how we die? Perhaps if we could learn to view death as a sacred life event, we might find the light in what is now darkness.

Tarron Estes, Founder

Tarron Estes, Founder

Tarron Estes is the founder and director of The Conscious Dying Institute of Boulder, Colorado; a Faculty of The Watson Caring Science Institute (WCSI) and Adjunct Faculty with University of Colorado School of Nursing.  She is a charter member of NEDAlliance.org, a newly forming collective of end of life educators creating standards of care, scope of practice, and a Practicum for graduates of End of Life Doula Programs. She is a member of the NHPCO End of Life Doula Council and leader in end of life doula certification and the positive death movement.