A “Sign” is defined as an object, quality or event whose presence indicates the probable presence of something else.
One day after having read, “Attending the Dying” by my friend Megory Anderson, I found myself at work in the ER. There was a half-naked psychotic lady screaming in the hall, the sound of a beeping ventilator alarm escaped from the curtained room of a man in respiratory failure, and a large crowd was gathering outside of Bed 2 because a matriarch was dying. Although I am accustomed to such visual and auditory chaos, it struck me that my dying patient and her family were not. Further, as I stood in this hall with the family whom I was attempting to shepherd along in creating a good death for their well-loved matriarch, I became acutely aware that I was not following the wise counsel set out by my friend, Megory.
In her brief and powerful tome, “Attending the Dying- A Handbook of Practical Guidelines”- Megory sagely advises those of us who accompany others on their journey towards last breaths. Standing in the bustle and roar of the ER, I could clearly recall her words regarding creating a sacred space for the dying and their loved ones:
“You have the calling and ability to set the stage for a good and holy death.”
“Creating sacred space is one of the first steps in setting the environment apart from day-to-day issues, which in turn helps everyone present remember the sacredness of the event unfolding.”
“Contain or mark the space.”
“Try to make this an intimate experience for the family, within the boundaries of the medical unit.”
“A sign on the door is always appropriate.”
Hmm…I thought, “What I really need is a sign. But what would it say?”
I mused that my favorite sign would go something like this:
“Shut up! Can’t you see that someone is dying in here?”
Being known for my public decorum, however, I decided against this one. But, what?
I could not imagine the family wanting a sign on the door that overtly stated that someone was dying. This would rob them of some of the privacy that I was hoping to create.
I could not come up with anything decent and reasonable on my own so I turned to the experts. In my ER, we have these fabulous humans called “Patient/Family Representatives” whose job is to socially, emotionally and spiritually help support and gain resources for people who are critically ill or dying. If ever there was a font of wisdom, these people are it! So, I presented the idea to them and of course they had the solution and here it is:
Ah, now there we go.
This sign promotes respect and privacy without announcing the condition of the patient.
So, I shared this on twitter and got this interesting response.
Love it! But this has to be “branded” or a commonly understood symbol for uninformed people to understand the message, or this funny response might be the product:
So the point is that indeed a sign is often a necessary, simple and powerful tool in defining a sacred space for the dying, particularly in a medical facility. But remember, when creating YOUR OWN signs for this purpose: A “Sign” is defined as an object, quality or event whose presence indicates the probable presence of something else. You have to understand the sign to obey it!
Make sure your sign is recognizable, respectful, and gets the job done.
Thank you, Megory, for teaching us how to better attend the dying and to groom the environment practically and with dignity, even within the chaos of the ER.
To learn more about Megory Anderson’s work visit the Sacred Dying Facebook page
Dr. Megory Anderson was called to a vigil at the bedside of a friend who was dying one night. That experience was so powerful that she began working with others who needed help attending to those who were dying. Today, Anderson is the executive director of the Sacred Dying Foundation in San Francisco, and trains others in the art of “vigiling,” a way of attending to the needs of the dying. She may be reached at: Megory@sacreddying.org
Advance planning is ultimately a spiritual practice. It requires that we face ourselves. It requires that we “number” our days.
It is precisely when we number our days, that we may suddenly discover what matters most…..
…as if a secret gift of grace has been opened. Fresh perspective may be
granted. You see, moments become particularly precious when viewed from their end.
Conversely, wisdom from my teacup may carry equal power:
Yet perhaps we should in fact do both:
count our days AND make our days count…
“that we may gain a heart of wisdom” and the secret of what matters most.
Tired of my riddles? Me too!
Follow this simple “to do” list to expand your wisdom and to know what matters most to you:
-Make your days count with your bucket list.
-Count your days with advance planning.
-Then, enjoy the rest of your life!
“The most significant variable of a relatively uncomplicated bereavement period or a prolonged and
tragic mourning depends to a great deal on the relationship the child and the parent had, on the old unresolved conflicts they carried within, and on the level of communication they had. Last but not least is the mourner’s early experiences with death and loss.”
~Elizabeth Kubler-Ross, MD
She cried as she held the baby bird. I cried as I held her (my daughter), after all she was my baby
My daughter’s attempt at rescuing and feeding the baby bird who had fallen out of it’s nest had failed. The bird had become weak and then collapsed this morning during feeding. Now it was dying.
It was the first time my daughter had watched dying up close. It was the first time she had touched a dying creature, let alone held the dying against her breast.
Dying birds aren’t much different than dying humans. Recognizing the course, I sensitively talked
her through it. I held her as she cried and cradled the bird. I whispered how nicely she was caring for the bird, and traced the signs of dying: He was weak, and later, unresponsive with heavy breathing through opened-beak. Suddenly, he woke up chirping loudly and looked up to my daughter. She was shocked!
She asked me in wonder, “Is this a last hurrah?”
I responded, “Sometimes there is a rally. It’s a last gift. It’s a time for goodbyes.”
Our bird was awake and chirping for 2 minutes. Then, he grew still… and pooped.
Immediately afterward, he kicked his left leg 4 times and died. His little body lay limp in her the curve of her palm.
“Is he gone, Mom?” she asked through thick tears.
“Yes, dear. He is gone. Thank you for being with him and caring for him like this.”
She lovingly closed his eyes, one at a time with the tip of her finger and laid him
to rest in the makeshift nest we had created for him.
Our vigil came to an end. We cried a little more. Our hearts were tender.
I brought my daughter tissues and water. She dried her eyes then carefully wrapped the bird. We called her other sisters together for a funeral.
We all marched in a natural procession to the animal burial ground on our little farm. I dug the grave. One child delivered a eulogy and the other decorated the site and selected a stone. We all stood in silence.
Why was this exercise so important for my children?
Because one day, the bird will be me.
Over the past century our society has become distant from both death and the tending to our dead. According to Gary Laderman’s book Rest in Peace: a Cultural History of Death and the Funeral Industry in Twentieth-Century America, “The divide was produced by three social factors: changes in demographic patterns, the rise of hospitals as places of dying, and the growth of modern funeral homes” (p 1). Our mental, emotional, spiritual, financial and societal health has been negatively affected directly and indirectly by this disconnect. Because our relationship to death is at the core of what it is to be human, this detachment affects both individual and societal health.
But there is good news! A revolution to reconnect with the final rite of passage has begun. More and more organizations, community events (e.g. Death Cafes, TedTalks) articles, blogs, books, are addressing this issue. The National Home Funeral Alliance reports membership has grown over 200% in the last two years. The time has come for nurses (and others involved in end-of-life care) to take leading roles in assisting communities to reclaim the human and inalienable right to care for their own deceased loved ones.
Nurses are in the unique and profound position to strengthen the power and improve the health of this neglected link. According to Olausson and Ferrell in their 2013 study of nurses’ perspectives on the importance of after-death care, “across all settings, nurses are generally the only professionals whose care extends beyond the time of death” (p. 1). We have not only an opportunity but a responsibility to facilitate care beyond the time of death that is beneficial and empowering to those grieving. Bedside ritual is an example of such care. In Cacciatore’s and Flint’s poignant study of rituals and their “evolutionary benefits” (p 158), ritual can be described as “out of the ordinary activities that act as a bridge, crossing thresholds from one status to another” (p. 159). These acts “can help families make sense of chaos, cope with loss, and facilitate grieving” (Berry and Griffie, 2010, as cited in Olausson and Ferrel’s study, p.1).
As nurses who have journeyed with hundreds of dying people and their families, the cofounders of One Washcloth know how precious and transformative hands-on after-death care can be for those beginning the grieving process. Once given a washcloth, loved ones require little (if any) instruction. The simple act of wiping the brow or hands of a friend or family member who has died is intuitive, can be extremely therapeutic and is a ritual in its own right.
Through the simple gift of a washcloth, we hope for movement toward healing in our society as a whole, as we come to accept death as an important, honored part of life.
One Washcloth would like to hear from you! We hope to build community among those who value the importance of reconnecting our families, friends, clients, and culture with care of our loved ones in death. Our hope is that through sharing our stories, a qualitative research study might be undertaken to demonstrate the healing benefits of involvement in after-death care of loved ones.
(Editor’s note: Nurses have a powerful opportunity to transform end-of-life and peri-mortem care. Take it! The One Washcloth Project is a great way to start. Please share any other ideas you have, regardless of where you are in the healthcare spectrum. -Monica Williams-Murphy, MD)
“Oh God!” she groaned, looking upward with tears flooding her cheeks, which were stretched into the shape of agony. Her chest heaved uncontrollably with grief.
“I am so very sorry,” I whispered again while leaning in and stroking her hand.
This is what death notification often looks like and feels like. We doctors should be masters of delivering some of the worst news that could ever be uttered, the worst news that could ever be heard.
Suddenly, she sat bolt upright! Clearing her throat, and staring me squarely and directly in the eyes, she asked me the most common and most important question that could ever be answered during death notification: “Doctor, did he suffer?”
I heard the question echo in the air: “Doctor, did he suffer?” “Doctor, did he suffer?” “Doctor, did he suffer?”
The air was thick, silent, and still as I deliberated the answer. I never removed my eyes from hers, because I knew that no matter what, I needed to deliver the answer with complete honesty and integrity.
Very slowly, I answered: “No, I do not believe he suffered.”
Thankfully, it was the honest truth.
Some of the greatest human fears surrounding dying are not death itself. Instead, one of the most prominent concerns is whether suffering will or will not occur, whether someone did or did not suffer. In fact, themes of the presence or absence of suffering should be a human fear that we in healthcare seek to actively manage and address. We cannot divorce emotions from medical events and medical decision making, so it becomes our role to manage them instead.
Specifically, we must learn to manage fears of suffering in two distinct end of life scenarios:
1- As the end of life approaches.
2- During death notification.
Let’s discuss each briefly:
1- As the end of life approaches, we must be able to describe whether a choice may increase or produce unnecessary suffering. This sounds awfully heavy doesn’t it? Because, in healthcare we like to talk about beneficial outcomes of medical choices (even when giving our spiel about Risks, Benefits and Alternatives to treatment options). But, for the patient and the family, the potential for suffering may be at least as important, if not more important than the benefit potential.
In fact, on more than one occasion, the minute that I explained to a patient or surrogate that the broken ribs often produced by effective CPR could cause the 90 year old grandmother to suffer should she be resuscitated… the minute I used the word “suffering”… the whole plan changed.
At other times, I spend a great deal of time using words that explain how a plan of care will reduce or mitigate suffering: “We will not allow her to suffer. I will do my best to keep her comfortable.”
2- During death notification, some of the most important words which could ever be spoken are; “He did not suffer” or “I do not believe he suffered.” The catcher here is that these words must ONLY be spoken when they are the honest truth. These words are very powerful purveyors of peace for surviving loved ones and will become part of the oral history of the deceased. These honest words are a priceless gift.
So, if you are a healthcare provider, please start actively addressing “suffering” in your care of the dying or the dead.
If you are a patient or family member, ask your healthcare provider about how a medical intervention could increase or reduce “suffering.”
We will ALL benefit from more open conversations about the topic.
To ask is to believe that somewhere there is an answer. ~~ Jonathan H. Sacks, PhD
Fear of dying is an existential experience for everyone. It is a common denominator in the human condition. All of us experience it from time to time. It is further provoked by the dying and loss of the loved one. Watching the dying person raises this fear to a recognizable level. What will I do without my loved one? How will I survive? Am I strong enough to make the change and remain sane? Will I die, too? The fear can take at least several forms: fear of actual physical death, and fear of annihilation of the self (“going crazy”). 1 Just as anger can be frightening, fear can turn into anger and rage. The fear must be managed so that it does not spiral completely out of control – something it threatens to do. Defenses against fear may take many shapes. Among the easiest and most primitive defenses is plain denial: “It won’t happen to me.” 2 As every thinking person knows, internal dialogs – conversations with oneself – are not always rational. “Don’t believe everything you think” is a psychological imperative. That is necessary but far from effortless.
A physician, an anesthesiologist, provides a bold and anguished description of fear. He documented his own feelings when his wife developed breast cancer. His words are poignant, keenly distressed. It is raw fear, the instant wish to deny/repress, the what-if’s, sense of helplessness, questions of self-preservation.
“I opened up the radiology images on the computer, and then I saw it. My wife had breast cancer. At that moment, my world crumbled. I felt trapped. I wanted to run out of the operating room and scream…I wanted it to be a dream, a bad dream. But it wasn’t…I wanted to do something, anything to make things better. But despite my eight years of medical training, and three years of experience in private practice, I could not actively heal my wife. And I felt helpless…I never acknowledged to myself how scared I really was…I repressed all my fears. What might happen if the cancer came back [after successful surgery]? What if it metastasized? How would I raise our girls alone?
I started having trouble sleeping, and I noticed many new physical symptoms – muscle fatigue and weakness, numbness and tingling in my fingers and arms, and palpitations… I became convinced that I had either multiple sclerosis or ALS…
[He eventually found relief by talking about these fears and anxiety in highly focused discussions.] I learned to recognize the symptoms of anxiety, and by simply recognizing its existence, the anxiety no longer controlled me and my [physiological] symptoms subsided.” 3
Talk, introspection, and insight. Those were the healing powers for the caregiver.
This doctor-caregiver’s report is a good reminder of the mind-body connection. Anger is not the only emotion capable of producing alarming physiological symptoms when allowed out of control. Fear can do that, too.
From ancient times to the present day, much has been written about defense mechanisms against fear of dying and death. The writings amount to lessons in self-preservation. Each has his own nuanced ideas and insights. Fear strips away the bearer’s sense of worth and dignity and reduces him to feelings of inferiority, helplessness, and worthlessness. Everyone must find a way to survive in good health. Perhaps he follows the suggestions of others, or he creates his own path, or both. Once again, there is no recipe, no how-to formula, no one-size-fits-all.
The fearful caregiver craves a return to stability, to emotional balance. A new level of equilibrium is sought: adjustment or adaptation. The word “acceptance” could be added here. However, there is no such thing as “acceptance” of death. So don’t worry if you can’t get there from here. The word was poorly chosen. An adjustment may be made to account for death. We may adapt to the concept of a finite lifetime. We may resign ourselves to our fate as humans. However, we do not “accept” the idea of our own death or the death of our loved ones. The idea of acceptance is based on denial. It implies perfect control over, and suppression of, the self-preservation instinct. We have no such perfect control. We do not “accept” death. We do not receive it willingly, favorably, or with approval. Acceptance is then ultimately incapable of relieving death fears. 4
Something emotionally adaptive and stabilizing is gradually achieved. It is a situation in which things once again happen as the caregiver thinks they should, and there are no harmful changes. With effort, it becomes a new reality. That takes time and patience and hard work, grief work. It takes sympathetic support from others, a harmony of feelings, as well as inward focus on calming the anguish and uproar. Of course it can be done. Fear of dying does not go away. It does come back, but under far better control. We do not need to be perfect to be good. Appreciation of life is decidedly heightened by the experience. That is the reward. The controlled comeback is a distinct demonstration of the strength of the bereaved caregiver, his resilience and his ability to grow. Strength and growth.
- One respected professor thinks of it – and teaches it – this way: “A distinction is made between fear of the process of dying, and fear of death itself and what may come when one is dead.”
Shelly Kagan, PhD, Open Yale Courses, Phil 176, Lecture 22: “Fear of Death”: Yale University, 2013. — http://oyc.yale.edu/philosophy/phil-176/lecture-22
However, the fear of death of the self is omitted from this suggested framework. The death of the self is a vital concept in any discussion of death fears.
- “Repression” may be a more appropriate term than “denial.” For a complete, formal definition and explanation of these complicated mechanisms of defense, see:
Anna Freud, The Ego and the Mechanisms of Defense, New York: International Universities Press, Inc., 1946, pp. 45-57.
- Scott Finkelstein, MD, “Being a caregiver has made me a better doctor,” blog: KevinMD.com, 17 May, 2013.
- For notable further discussion, see: Bruno Bettelheim, PhD, Surviving and Other Essays, New York: Alfred A. Knopf, 1979, pp. 5-6.
Dr. Bettelheim was a child psychologist, Holocaust survivor, genocide scholar, and psychoanalyst.
Image credit: www.thescrambler.com — Dale Chihuly’s glass ceiling
Tags: #fear #eol #hpm #GriefWork #resilience #growth
Rea Ginsberg is a retired director of social work services, hospice coordinator, and adjunct professor of clinical social work. She can be reached on LinkedIn and on Twitter @rginsberg2.