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
“The Bereavement,” marble, 2010
Grief is a synonym for intense psychic pain. It is seldom invited and never welcomed. Death is not a gentle teacher. Everyone loses someone they love, and everyone dies someday. Everyone is afraid of it and everyone is angry at it. Some people say no no, I’m not mad and scared. Unfortunately, the truth doesn’t change because it is denied. Usually, everyone dies only once, and almost no one comes back to report the journey or the destination. For some, maybe that is one of the scarier aspects of death – the unknown. At least, it is intriguing. It is surely the essence of awe. We are left alive to wonder and imagine. We have lively imaginations.
For survivors, peace isn’t immediate, after the death. We have to talk ourselves into it. That is the way grief works. That is grief work. It takes awhile. Each of us has our own personal timelines for healing. There is no need to hurry up just because someone else says so. The time may be 2 years or 10 or 2 forevers. To each his own way.
Also, none of us are condemned to be a failure. We do not have to be defined by our negative thoughts. We can find and observe them, confront them, and refuse to be defeated by them. Negative thoughts cannot dictate our behavior without our permission. We have a choice of our response, of what we do. Between the thoughts and the response fall decisions. We can decide to turn “I can’t do this” into “I will do my best, one day at a time, and succeed.” Call it self-determination reinvented.
And the past can be reimagined, reframed as the post-death relationship forms between the survivors and the lost. To reframe is to alter our perspective, to see things differently. That changes the past! It is amended. We can then make significant predictions about the past; for instance, that unresolved relationship issues will receive further painstaking attention toward reconciliation. Predicting the past! It is a privilege of the human mind. Imagine. That is strength and growth.
Therein lies the route to composure and the new emotional balance we seek. It is peace on a different plane of existence, a plane that does not depend on the physical presence of the one who was lost. Even then, a part of us remains grieved when we lose loved ones, and that is natural. It is normal. It is to be expected. It is not a mental disorder.
How we grieve and find our way from keen distress to new inner balance requires remarkable time and tears and talk. Yes, it is certainly possible, making building blocks out of stumbling blocks. Honest self-awareness promotes the process. The sincere inward view is a lesson in courage and perseverance. The strong person is the one who can conquer himself. It is worth the hard work. All of us do our best to heal the outrageous wounds of loss. Those who find the way are a source of comfort and companionship to others still searching.
What I know is that love is stronger than death.
A grief story has no proper end. Whoever has the experience is required to tell the story. It is a moral imperative. It is healing and it keeps alive the memory of the one who died. It fulfills our promise to the dead: “I will always remember you.” (The double-negative form of this promise, “I will never forget you,” is insufficient.) We are the living continuation of their story. This life-after-life is our loved ones’ right. Indeed, love and respect make it so. Just so.
When someone also listens to those stories with kindness, caring, and hope, it matters. It makes all the difference. We need others to bring us back from the perceived isolation of mourning into the land of the living. It is a reminder of the meaningfulness of life. When we stand together, we are braver.
Listening is an art that transforms lives. It is an act of compassion and true concern. It can change our minds. It is still changing mine. Death teaches life. It is a vastly creative force.
Even in the exile of bereavement, friendship exists and can become an anchor.
Where there is dark shadow, there is also much light.
“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing [to remember] is, even if we’re apart… I’ll always be with you.”
— A.A. Milne, Winnie the Pooh
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.
“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.