In Appalachian culture, a bizarre phenomenon of feather crowns found in the pillows of sick people became known as an omen of death.
By J. Nathan Couch
Feather pillows are about as rare the Loch Ness Monster, but once upon a time they were as common as could be.
Long ago, the people of Appalachia began to notice a peculiar phenomenon: odd crownlike masses in the pillows of the seriously ill or recently deceased.
These objects became known as Death Crowns (or less-commonly, angel crowns). Death Crowns are usually elaborate, interlocking designs that resemble a disc or crown. The quills always point inward, and though rare, are only found in the feather pillows of the seriously ill or recently deceased.
Because of the isolated, rural nature of the area, the phenomenon appears to be unique to Appalachia, or locations where some of these mountain folk migrated, such as Missouri, Indiana, and Ohio. But it’s almost exclusively a lost-belief now that most people have switched out their feather pillows for comfort foam or synthetic fibers.
I was fortunate enough to overhear a death crown story in my youth, otherwise I’d likely be unaware such a concept ever existed. My family has lived in Hall County, Georgia for generations, just miles from the foothills of the Blue Ridge Mountains.
My great aunt paid us a visit when I was maybe 5 years old. She started talking about the recent death of her elderly father. He’d been killed while walking around a bus he’d just exited. A car sped by without caution, striking the old man. She was elected the sorrowful chore of sorting through her father’s belongings. As she lifted her father’s ancient feather pillow she felt something solid inside. She started to throw the pillow away, but something compelled her to open it up. She reached inside and probed with her fingers in search of what she had felt. To her astonishment, she pulled out an intricately woven wreath of feathers, roughly the size of a bird’s nest. She took this has a sign her father had gone to heaven.
After several minutes of convincing, she persuaded me to go play. After a while, I forgot about the whole thing—until bed of course. I recall squeezing and kneading my pillow in search of anything that might remotely feel like a “death wreath.” I didn’t. Finally, I fell asleep.
These odd formations are usually interpreted as a heavenly sign, but skeptics believe that the movements of a dying person—tossing and turning combined with fever sweats–could cause these objects to take form.
If you are one of the few that still sleeps on feather pillow, do not lose all hope if you find a Death Crown in your pillow tonight. One old wives’ tale claims that if you break these wreaths up you could prevent the death of the person the pillow belongs to.
A collection of these oddities can be found at the Museum of Appalachia in Clinton, Tennessee.
For those who are dying, it’s clear why all dogs go to heaven.
They provide comfort not just in death, but in other difficult times, whether it’s depression, job loss or a move across country. Dogs know when people are dying or grieving through body language cues, smells only they can detect and other ways not yet known, experts say.
As a hospice veterinarian, Jessica Vogelsang knows how much “being there” can mean to struggling people or pets. She’s director of Paws Into Grace in Southern California, a group of vets who provide end-of-life care and euthanasia for pets at home.
The San Diego vet finished her first book, “All Dogs Go to Kevin: Everything Three Dogs Taught Me (That I Didn’t Learn in Veterinary School),” just before learning her mom, Patricia Marzec, had an inoperable brain tumor. The title of the memoir published last month refers to what Vogelsang’s toddler heard when he was told all dogs go to heaven.
Her parents moved in so Marzec could enjoy her last months with family, and Vogelsang’s golden retriever, Brody, picked up on the changes. He always jumped on her parents but stopped when they arrived in April.
“He knew Mom was sick. He was with her 24-7,” Vogelsang said. “He was trying not to be too obvious, but Dad was on one side and he was on the other.”
Brody would lay by Marzec’s feet or rest his head on her lap when he sensed she was sad. He wedged in next to her when hospice workers came by, ignoring her shaking hand as she patted his head, Vogelsang said.
“He is still my dog, but he knew when they came they needed him more than I did,” she said.
Dogs know to comfort people by sniffing out some cancers, such as on the breath of a lung cancer patient, said Dr. Bonnie Beaver, professor at Texas A&M University’s College of Veterinary Medicine and executive director of the American College of Veterinary Behaviorists.
But most often, it’s about body language.
“They recognize fragile, slumped over, not moving as well,” Beaver said. “That’s how they read each other. … They are great at it, and we are not.”
Some rest homes and hospices that have live-in dogs to comfort patients even use a dog’s behavior — such as who the animal chooses to sleep with — as a sign to tell relatives to come say their goodbyes.
“A lot of resident dogs know those people and know something is different, whether the smell changes or they are moving less,” Beaver said.
Dogs also can help those dealing with other challenges.
In the book, Vogelsang introduces pets that got her through some life changes. As a little girl, her Lhasa Apso named Taffy helped her adjust to an unwanted move from New England to California.
Just after the birth of her first child, her golden retriever Emmett wouldn’t leave her alone as she struggled with postpartum depression and a new career as a veterinarian. He gave her love, as well as looks that led to some soul-searching to get the help she needed, Vogelsang said.
Later, an older Labrador retriever named Kekoa taught her to let go of unrealistic expectations as she balanced career and motherhood. When the dog got cancer, Vogelsang didn’t push endless procedures and medications, because it wasn’t right for Kekoa. That led her into the hospice-care field.
After Vogelsang’s mother moved in, the family spent two months watching movies, eating cookies and watching butterflies flit across the yard. Pat Marzec even read her daughter’s book, giving her approval.
She died June 3, about a month before it went to print.
“Those last two months we had were just an incredible time,” Vogelsang said. “Death is just a moment. Life is everything else leading up to it.”
These days it’s common to openly discuss topics that past generations would have considered rude, such as sex, money, politics and religion. Death on the other hand, particularly one’s own, often remains a conversational taboo for many, though it’s probably one of the most important discussions to be had with those closest to us.
In this state, some people are taking that final topical frontier out of the humidor with death cafes and advanced directives. Some also are taking action with Compassion & Choices, the organization now working with residents in Washington, Vermont and Oregon who choose physician assisted suicide (PAS) when they are diagnosed with fewer than six months to live and no reprieve in sight. Former Washington Governor Booth Gardner led the voter initiative that legalized PAS in this state in 2008, as he faced his own demise from Parkinson’s disease.
Only a small number of people in Washington have taken advantage of the law since its passage. One of them, islander Greg Smith, followed through on his choice on July 27, peacefully surrounded by loved ones. Smith was a long-time advocate of death with dignity and, in an effort to enlighten others, he recorded a conversation with his friend, Lin Noah, on a Voice of Vashon episode of Island Crossroads about two weeks before his final going away party.
Smith was candid in telling the story of his battle with lung cancer, which returned “with a vengeance” two years ago. In May of this year, his doctors told him there was nothing more they could do and that he had two to six months to live. Smith said his decision to take his own life had germinated well before that — at his initial diagnosis.
“I’d seen friends and family members leave this mortal coil with the disease,” he explained, “and realized that was not the end I wanted for myself.”
To offer a chance for family and friends to say goodbye, Smith organized a party for the night before he was to drink his final cocktail.
To assure that key friends and family could attend, “I had to schedule my suicide around other people’s vacations,” he said laughing. He added that he chose a date just three months after his final diagnosis because he didn’t want his sons to go through the final stages of lung cancer with him.
Smith’s sons, ages 31 and 28, spent considerable time working with him to accept his early demise – Smith was only 61 – and respect his wishes for a peaceful passage. Smith called his choice an opportunity to “stand up with dignity, face cancer and embrace my sons one last time,” rather than dwindle from life in small and excruciating increments.
Snubbing his nose at cancer, Smith said he chose PAS to take control of his life away from the disease and end it on his own terms. Smith had written on a national PAS blog for some time, urging people in other states to have the freedom to choose. One reader took his impassioned diary to the American Medical Association’s (AMA) national convention. The follow-up report was that the AMA’s ethics committee reviewed Smith’s diary with fresh eyes, generating hope that the association might reconsider their opposition to PAS.
To those who would wonder if he might change his mind, Smith said he didn’t want to continue “playing roulette” with the end of his life and that he was ready to say goodbye. He added that with the awareness of death’s imminence, he felt he had used his time well, deepening important relationships.
Some would say doctors have been behind the curve in the move toward choices at the end of life. Naturopath Brad Lichtenstein leads so-called death cafes in Seattle, where people gather over coffee to address the inevitable, honestly and in a safe environment. He has stated that while most physicians eschew heroic measures at the end of their own lives in favor of dying quietly at home, they often implement every available life-prolonging tool for their patients.
“For a physician, when a patient dies, they’ve failed,” he explained.
Statistics show that more money is spent in the last months of life on extra measures that often will not prolong life at all. But, in the absence of a living will or advance directives, doctors will do everything possible to keep a patient technically alive.
Lichtenstein’s death cafes, the growth in the number of palliative care physicians and the entry of hospice care into the mainstream all herald changes in the end-of-life field. Soon, islanders will have access to a program to assist in the process of identifying preferences and creating advance directives for end of life before it is imminent. Called Honoring Choices, it is based on a model that originated in Lacrosse, Wisconsin, and will be offered by nurse practitioner Wendy Noble, and Carol Spangler, who has a graduate degree in public health. The two will offer facilitation services to families free of charge.
Noble and Spangler will host a presentation on Thursday by Bernard “Bud” Hammes, Ph.D., the medical ethicist who developed and directs the Wisconsin program (Respecting Choices). Hammes, an international leader in the field of end of life issues and advance care planning, has been featured on NPR, ABC’s Good Morning America, CBS Sunday Morning, NBC Rock Center and, most recently, on the PBS program, “Caring for Mom and Dad.”
He will appear with, among others, representatives from Honoring Choices Pacific Northwest, the Snohomish County Health Leadership Coalition and the Whatcom Alliance for Health Advancement, two organizations that have successfully implemented the program in their communities.
The presentation, according to Noble and Spangler, will provide specifics on what advance care planning means, why it’s important and what’s happening in the state to help people develop advance care plans.
What the two say they hope to do on Vashon is two-tiered. Their first step is to train others in the process of facilitating Honoring Choices.
“With a trained team,” said Noble, “we’ll begin small group conversations about advance directives and provide appropriate documents and instructions for completing and filing those directives.”
And when invited, they’ll meet with individuals and their families to help clarify their wishes for end of life health care.
As Spangler noted, “Determining and sharing end of life choices is a process. It’s a difficult discussion to start with one’s family.”
She and Noble say they are committed to helping Island residents start those discussions and share their decisions.
Professionals in the “death trade,” as it’s often referred to, agree that discussions of death and dying are really about living. With the implementation of this program, it appears that Vashon will soon be a place where people are ready to lead both the exploration and the conversation.
Yesterday, one of my closest friends suffered an unexpected and massive heart attack – and died. Mark was generous, funny, honest, and kind. He was a true friend.
The funeral is set for early next week and I’ve been asked to say a few words. Out of respect for Mark, I want to speak. I will speak. The problem is I can’t stop crying. I haven’t cried like this since I was a boy. I’m scared that I will break down while speaking at the funeral.
Also, every time I think of Mark, I feel like somebody is squeezing my own chest. Is this normal?
Please advice me at this difficult time. I just can’t believe this is happening.
Thank you for trusting me with your story. Losing a loved one in such a sudden way is heart-wrenching. It makes sense to feel confused and scared. It makes sense to cry.
While surely disconcerting, the current tension felt in your chest is a normal response to yesterday’s tragedy. The mind and body are deeply interwoven realities. What touches one, touches the other. By making room for the wellspring of grief within, the gripping ache of loss and shock will ease. Allow your emotions to flow. They will bring you back to your boyhood when your heart was vulnerable, open and sensitive. The anxious and painful knot in your chest will open as you open.
Now, let’s consider Mark’s funeral. You’ve been asked to speak in a public space set aside for grieving the death of a close friend. You’ve agreed to share your words at a time when your own grief feels overwhelming. How can you speak clearly in this situation? What if, as you fear, you cry in front of everyone?
In her book, “Healing Through the Dark Emotions: The Wisdom of Grief, Fear, and Despair,” psychotherapist Miriam Greenspan acknowledges that “loss, vulnerability, and violence” are woven into the very fabric of what it means to be human. Given this, our natural, healthy, and inevitable response is to feel “the dark emotions.” However, by calling grief, fear and despair “dark,” Greenspan doesn’t mean these feelings are bad. Rather, she reflects upon how our culture keeps these emotions in the dark, “shameful, secret, and unseen.” This is particularly true for men.
There isn’t a lot of room in our collective discourse for the public expression of a man’s grief. Crying in front of other men is still commonly viewed as a shameful defeat rather than a healthy and fully human form of expressing hurt or loss. Given this, many men grieve in private or they repress the emotions of sadness and focus on anger. For such men, the knots in their chest may never unravel. In fact, men are more likely than women to suffer from physical symptoms like headaches or backaches after the death of a loved one due to their struggle in making room for the body’s need to grieve.
These facts need not deflate your resolve. To stand with an open heart and offer your words of tribute is a powerful way of honoring your friend. You describe Mark as “honest” and “kind.” You know that such a friend deserves a funeral reflective of his best qualities. Yes, tears may come. Yes, your voice may shake. Yes, those gathered may see into the depth of your sadness. That can be scary. So be it. Better to speak with courage than to close down to the ebb and flow of emotion which nature intended us to feel at such difficult times.
May courage be yours as you walk to that podium David. May your words flow with honesty and kindness.
Finally, consider this insight offered by Lara Rogers Krawchuck, professor at the University of Pennsylvania’s School of Social Policy and Practice. Well known for her contributions to the further understanding of grief, loss and caregiving, she states: “Healing from a great loss comes a little bit at a time. It can look like a movement from shock or numbness to anguish to eventually being able to experience small moments of joy –- and eventually more joy than sorrow.”
Your friendship with Mark brought joy to your life. He was a “true friend” as you describe. Consider writing Mark a letter and express both the pain felt from his sudden death as well as the joy you’ve known in your shared friendship. Take a long drive and visit places meaningful to Mark. Or, go for a walk in nature and imagine Mark beside you. Talk to him. Express your sorrow and your gratitude.
In the processing of our individual stories of grief, we can experience the deep love found in universal human compassion. In your willingness to grieve Mark’s death, you will uncover qualities within your being that will allow you to become a source of refuge and strength for others. Of this, I am certain.
David, your story stays with me. I’m hopeful these reflections bring a healing balm of solace at this time. May you be open to the movement of healing as it manifests through you over the course of the next few days, weeks, months and years.
Parents often feel uneasy and unprepared in responding to their children’s curiosity about death. Studies indicate that many parents felt they had not been guided to an understanding of death in their own childhood and as parents either had to improvise responses or rely on the same evasive techniques that had been used on them. It is useful, then, to give attention to the attitudes of adults before looking at the child’s own interpretations of death.
By ROBERT KASTENBAUM
The Innocence of Childhood
Two contrasting developments occurred as a prosperous middle class arose during the Industrial Revolution, which began in the mid-eighteenth century. In the past children had been either economic assets or liabilities depending upon circumstances, but seldom the focus of sentiment. Now both children and childhood were becoming treasured features of the ideal family, itself a rather new idea. By Victorian times (the period of the reign of Britain’s Queen Victoria, from 1837 to 1901), the family was viewed as a miniature replica of a virtuous society under the stern but loving auspices of God. Instead of being regarded primarily as subadults with limited functional value, children were to be cherished, even pampered. Frilly curtains, clever toys, and storybooks written especially for young eyes started to make their appearance. The idea of childhood innocence became attractive to families who had reached or were striving for middle-class success and respectability. Fathers and mothers had to meet obligations and cope with stress and loss in the real world, while it was considered that children should be spared all of that. It was believed that children cannot yet understand the temptations and perils of sex or the concept of mortality and loving parents should see to it that their children live in a world of innocence as long as possible.
Furthermore, Sigmund Freud suggested that in protecting their children from awareness of death, then, parents, in a sense, become that child and vicariously enjoy its imagined safety and comfort.
One of history’s many cruel ironies was operating at the same time, however. Conditions generated by the Industrial Revolution made life miserable for the many children whose parents were impoverished, alcoholic, absent, or simply unlucky. The chimney sweep was one of the most visible examples. A city such as London had many chimneys that needed regular cleaning. Young boys tried to eke out a living by squeezing through the chimneys to perform this service. Many died of cancer; few reached a healthy adulthood. While mothers or fathers were reading storybooks to beloved children, other children were starving, suffering abuse, and seeing death at close range in the squalid alleys.
Children so exposed to suffering and death did not have the luxury of either real or imagined innocence; indeed, their chances for survival depended on awareness of the risks. Many children throughout the world are still exposed to death by lack of food, shelter, and health care or by violence. Whether or not children should be protected from thoughts of death, it is clear that some have no choice and consequently become keenly aware of mortality in general and their own vulnerability in particular.
Children’s Death-Related Thoughts and Experiences
Encounters with death are not limited to children who are in high-risk situations, nor to those who are emotionally disturbed. It is now well established that most children do have experiences that are related to death either directly or indirectly. Curiosity about death is part of the normal child’s interest in learning more about the world. A goldfish that floats so oddly at the surface of the water is fascinating, but also disturbing. The child’s inquiring mind wants to know more, but it also recognizes the implied threat: If a pretty little fish can die, then maybe this could happen to somebody else. The child’s discovery of death is often accompanied by some level of anxiety but also by the elation of having opened a door to one of nature’s secrets.
Child observation and research indicate that concepts of death develop through the interaction between cognitive maturation and personal experiences. Children do not begin with an adult understanding of death, but their active minds try to make sense of death-related phenomena within whatever intellectual capacities they have available to them at a particular time. Adah Maurer, in a 1966 article titled “Maturation of Concepts of Death,” suggested that such explorations begin very early indeed. Having experienced frequent alternations between waking and sleeping, some three-year-olds are ready to experiment with these contrasting states:
In the game of peek-a-boo, he replays in safe circumstances the alternate terror and delight, confirming his sense of self by risking and regaining complete consciousness. A light cloth spread over his face and body will elicit an immediate and forceful reaction. Short, sharp intakes of breath, and vigorous thrashing of arms and legs removes the erstwhile shroud to reveal widely staring eyes that scan the scene with frantic alertness until they lock glances with the smiling mother, whereupon he will wriggle and laugh with joy. . . . his aliveness additionally confirmed by the glad greeting implicit in the eye-to-eye oneness with another human. (Maurer 1966, p. 36)
A little later, disappearance-and-reappearance games become great fun. Dropping toys to the floor and having them returned by an obliging parent or sibling can be seen as an exploration of the mysteries of absence and loss. When is something gone for good, and when will it return? The toddler can take such experiments into her own hands—as in dropping a toy into the toilet, flushing, and announcing proudly, “All gone!” Blowing out birthday candles is another of many pleasurable activities that explore the riddle of being and nonbeing.
The evidence for children’s exploration of death-related phenomena becomes clearer as language skills and more complex behavior patterns develop. Children’s play has included death-themed games in many societies throughout the centuries. One of the most common games is tag and its numerous variations. The child who is “It” is licensed to chase and terrorize the others. The touch of “It” claims a victim. In some versions the victim must freeze until rescued by one of those still untouched by “It.” The death-related implications are sometimes close to the surface, as in a Sicilian version in which a child plays dead and then springs up to catch one of the “mourners.” One of the most elaborate forms was cultivated in the fourteenth century as children had to cope with the horrors of the Black Death, one of the most lethal epidemics in all of human history. “Ring-around-the-rosy . . . All fall down!” was performed as a slow circle dance in which one participant after another would drop to the earth. Far from being innocently oblivious to death, these children had discovered a way of both acknowledging death and making it conform to the rules of their own little game.There are many confirmed reports of death awareness among young children. A professor of medicine, for example, often took his son for a stroll through a public garden. One day the sixteen-month-old saw the big foot of another passerby come down on a fuzzy caterpillar he had been admiring. The boy toddled over and stared at the crushed caterpillar. “No more!” he said. It would be difficult to improve on this succinct statement as a characterization of death. The anxiety part of his discovery of death soon showed up. He no longer wanted to visit the park and, when coaxed to do so, pointed to the falling leaves and blossoms and those that were soon to drop off. Less than two years into the world himself, he had already made some connections between life and death.
Developing an Understanding of Death
Young children’s understanding of death is sometimes immediate and startlingly on target, as in the fuzzy caterpillar example. This does not necessarily mean, however, that they have achieved a firm and reliable concept. The same child may also expect people to come home from the cemetery when they get hungry or tired of being dead. Children often try out a variety of interpretations as they apply their limited experience to the puzzling phenomena associated with death. Separation and fear of abandonment are usually at the core of their concern. The younger the child, the greater the dependence on others, and the more difficult it is for the child to distinguish between temporary and permanent absences. The young child does not have to possess an adult conception of death in order to feel vulnerable when a loved one is missing. Children are more attuned to the loss of particular people or animal companions than to the general concept of death.
A pioneering study by the Hungarian psychologist Maria Nagy, first published in 1948, found a relationship between age and the comprehension of death. Nagy described three stages (the ages are approximate, as individual differences can be noted):
• Stage 1 (ages three to five): Death is a faded continuation of life. The dead are less alive—similar to being very sleepy. The dead might or might not wake up after a while.
• Stage 2 (ages five to nine): Death is final. The dead stay dead. Some children at this level of mental development pictured death in the form of a person: usually a clown, shadowy death-man, or skeletal figure. There is the possibility of escaping from death if one is clever or lucky.
• Stage 3 (ages nine and thereafter): Death is not only final, but it is also inevitable, universal, and personal. Everybody dies, whether mouse or elephant, stranger or parent. No matter how good or clever or lucky, every boy and girl will eventually die, too.
Later research has confirmed that the child’s comprehension of death develops along the general lines described by Nagy. Personifications of death have been noted less frequently, however, and the child’s level of maturation has been identified as a better predictor of understanding than chronological age. Furthermore, the influence of life experiences has been given more attention. Children who are afflicted with a life-threatening condition, for example, often show a realistic and insightful understanding of death that might have been thought to be beyond their years.
The Adolescent Transformation
Children are close observers of the world. Adolescents can do more than that. New vistas open as adolescents apply their enhanced cognitive abilities. In the terminology of influential developmentalist Jean Piaget, adolescents have “formal operations” at their command. They can think abstractly as well as concretely, and imagine circumstances beyond those that meet the eye. This new level of functioning provides many satisfactions: One can criticize the established order, take things apart mentally and put them back together in a different way, or indulge in lavish fantasies. The increased mental range, however, also brings the prospect of death into clearer view. The prospect of personal death becomes salient just when the world of future possibilities is opening up.
Adolescents have more than enough other things to deal with (e.g., developing sexual role identity, claiming adult privileges, achieving peer group acceptance), but they also need to come to terms somehow with their own mortality and the fear generated by this recognition. It is not unusual for the same adolescent to try several strategies that might be logically inconsistent with each other but that nevertheless seem worth the attempt. These strategies include:
Playing at Death: To overcome a feeling of vulnerability and powerlessness, some adolescents engage in risk-taking behavior to enjoy the thrilling relief of survival; dive into horror movies and other expressions of bizarre and violent death; indulge in computerized games whose object is to destroy targeted beings; and/or try to impersonate or take Death’s side (e.g., black dress and pasty white face make-up worn by “goths”).
Distancing and Transcendence: Some adolescents engross themselves in plans, causes, logical systems, and fantasies that serve the function of reducing their sense of vulnerability to real death within real life. Distancing also includes mentally splitting one’s present self from the future self who will have to die. One thereby becomes “temporarily immortal” and invulnerable.
Inhibiting Personal Feelings: It is safer to act as though one were already nearly dead and therefore harmless. Death need not bother with a creature that seems to have so little life.
These are just a few examples of the many strategies by which adolescents and young adults may attempt to come to terms with their mortality. Years later, many of these people will have integrated the prospect of death more smoothly into their lives. Some will have done so by developing more effective defensive strategies to keep thoughts of death out of their everyday lives—until they become parents themselves and have to deal with the curiosity and anxiety of their own children.
Drugs used to prevent the so-called “death rattle” of dying patients can have unpleasant side effects and may not be “morally and economically” justifiable if used only to reduce the distress of relatives, according to new guidelines.
The death rattle is a common symptom in the final days and hours before death. It is one of most well-known indicators that death is near and can be extremely upsetting for relatives at the bedside.
It occurs when secretions such as saliva collect at the back of the throat – often after a person has lost their ability to swallow – creating a hollow, gurgling sound.
Clinicians often use drugs called anti-muscarinic agents to ‘dry up’ the secretions, in order to reduce the symptoms.
However, according to new draft guidance on the care of the dying from the National Institute of Health and Care Excellence (NICE), there is little evidence that the drugs are effective, and they can also cause side effects including dryness in the mouth, blurred vision and retention of urine.
The guidance says that repositioning the patient or using suction tubes can be just as effective at reducing the symptoms.
“It is common to experience noisy respiratory secretions at the end of life…and the death rattle is a strong predictor of death,” the draft guidance says. “The noise can cause considerable distress, both at the time and possibly after death, due to concerns that the person may have drowned or suffocated to death.
“For many years it has been the practice of clinicians to administer subcutaneous anti-muscarinic agents in an attempt to ‘dry up’ secretions and relieve any distress primarily to carers and relatives despite a lack of evidence of any beneficial effect to the patient or improvement in distress levels.”
It goes on to say that, along with the side effects, the cost of using drugs makes it “hard both morally and economically to justify their continued use when the current evidence does not support them and treatment is usually aimed at minimising distress of people other than the dying person.”
The new guidance also includes recommendations on fluid intake for dying people, decision-making around medication and communication with patients and relatives.
Their publication follows the abolition last year of the controversial Liverpool Care Pathway (LCP), which was withdrawn after a review found serious failings in the way it was being implemented, including concerns that decisions around end of life care were not always being made by experienced clinicians.
NICE also said the LCP had suffered from a “perception that hydration and some essential medications may have been withheld or withdrawn, with negative impact on the dying process.”
The new guidelines, which will now go out for consultation, state that people in the last days of life should be encouraged to drink if they are able and wish to.
Sir Andrew Dillon, chief executive of NICE said: “Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.
“Earlier this year the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care.”
Working with cancer patients makes me more determined to experience all that life has to offer, but sometimes the pain is more than I can bear
By Rachel Smith
We all have an idea of how life is going to be, but mine has changed radically in the past seven years. I work on a project for children whose parents have cancer, helping them understand the illness and supporting them when their parent dies. I also support parents to communicate with children and, when the prognosis is not looking positive, I help them write books and letters for the family they are leaving behind.
I spend months, sometimes years, getting to know a family and then one day while going about my daily life I will receive a text, often early in the morning saying “he slipped away at 4am” or “Rachel, he’s gone”. Over the past seven years I have experienced so many losses in my work. I try to remain emotionally separate, but I am human, a compassionate human, and it hurts every time. Often I check my work phone just before doing the school run. I drive my two young children to school and then cry as I go on to work. It is not the same gut-wrenching loss as that of a personal loved one, but silent tears in the knowledge that a family’s world has shattered.
As I arrive in work, all the normal things are happening. People in the kitchen are talking about diets, referrals for new families are coming in and I am trying to fathom how I can fit a funeral into my week if the family need me to attend. I often get told by families that I’m the one who remained real throughout everything, and I don’t want to let them down at the end.
When working in end-of-life care the level of intimacy with someone changes completely. Time becomes the most precious commodity and communication is honest. To be able to give someone the chance to convey their dreams is an honour, but it takes its toll.
Recently, a gentleman I worked with died. I had known his family for six years, Ifilmed his eulogy and hours of footage for his family. The magnitude of life and death suddenly hit me. I felt I had reached a limit of sadness and could not take any more. I needed time to think, to feel alive again and to be surrounded by life.
In this job there is no place for burnt-out heroes or martyrs. We all have a limit and I felt like an empty cup. I find that to cope I need to strip life back: I want to feel the world around me, the rain falling on my face and be in places of natural beauty. I need to be with people I love, who understand my job without needing to talk about it. Talking is exactly what I don’t want to do; I want to laugh and be outside. I love to swim in the sea all year round – it makes me feel acutely alive.
When recording books with people a common plea I hear is “I have no regrets, I just wish I had more time”. So I create time in my own life; I breathe, love, hug and do all those clichéd things so that I can go back into work and be useful again. I refill my cup. I think that when working in such a profession, at times we need to bend the boundaries to be human and to understand that is what people need. It is ok to be hurt and show hurt, to put your hands up and say I need a break, I need to go and breathe for a while.
To finish, I shall leave you with words by Fiona, who wrote this for her three children two weeks before she died.
“You are meant to be here. I believe that although I wanted to be here and share your life: the ups and the downs. God needs me elsewhere and you have to stay on Earth. Be a good friend and surround yourself with good friends. You don’t need to be the most popular one, the most strong or the most clever. But always be a good friend to those around you.”