Category: Talking about death

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Deconstructing Death as a Dying Woman

by Mackenzie E. Rockcastle

[N]ext week, I have my second scan since being diagnosed with terminal cancer.

 
The thought of the little white masses glowing brightly on my doctor’s computer monitor leaves my stomach unsettled—leaves my mind unsettled.

As my “scanxiety” builds, I find myself leaning on my own advice to approach my fears of dying. A few weeks ago, I gave my therapist a breakdown of what I thought were my general fears surrounding death. She was surprisingly thankful for my analysis of such an enormous concept and fear that is shared by so many. She told me many of her patients held an irrational fear of dying. Breaking death down into the smaller fears that truly comprise the overall terror for the word makes it a little less intimidating.

She believed this mindset could help some of her other patients get to the root of their obsessions. So I thought to myself, perhaps my breakdown of death—one that has helped me unveil my true fears, befriend my own death, and enhance my life—could help others do the same.

To start the process of grasping my fears surrounding death, I first had to ask: Is it possible to create a good relationship with death? And in order to create a good relationship with it, well, perhaps we need to understand why we have such a bad relationship with it.

I personally see four major reasons to feel uncomfortable about death. All of them associate with fear. Fear of the dying itself, fear of what lays beyond death, fear of the life we will never live, and fear for those we leave behind.

At this point, I believe I’ve come to peace with three out of the four. But I had to ask (and continuously have to ask) myself the following questions:

1. What is dying?

Dying is a physical action. It is momentary. Physical pain may be associated, but it is temporary, not eternal. Dying is generally defined as “to stop living.” This definition causes death to be associated with the opposite of life. I don’t like this association, and I don’t believe it properly does justice to the word death.

As a young child in school, I specifically remember doing worksheets to understand opposites: on/off, black/white, night/day, life/death. Looking at a lot of ancient cultures, many have a book of the dead: The Egyptian Book of the Dead, The Celtic Book of the Dead, The Tibetan Book of the Dead, and so on. The way that most of them describe death is not as the opposite of life, but the opposite of birth. I think this shift in language—this shift in the juxtaposition of life and death—is important.

It is an entirely different concept. It suggests that we walk into a room and we walk out of a room, not that the room disappears.

2. What comes after death?

Since this is the most uncertain part of the equation, this question can bring about the most fear. Do we fear an almighty man in the sky? Burning for all eternity? That, maybe, this is it? Religion, upbringing, what we’ve experienced, what we’ve watched, and what we’ve read all play into what we believe happens after death. But the reality is, no one knows for certain. Beliefs, faith, and religion aside, really no one can say without a shadow of a doubt what happens when we die.

In this thought, some people hold fear, and some people hold peace.

For me, this is the most fun part. As a nonreligious, but spiritual person, this is a playground of opportunity. I personally don’t hold a fear for this. Rather, I see the space beyond death as a a beautiful existence where our beings no longer hold their human form. I acknowledge my brain doesn’t have the capacity to understand this fully, and therefore I don’t try too hard to create an image or definition to coincide, rather just a feeling. This is the part of death I feel to be the most reassuring, warm, and whole. It’s the presence that gives full peace.

3. Are we afraid of the things you will miss out on, the things we never did, or the things we’ll never do?

This fear is actually comprised of regret. These are the things in life we always thought we’d achieve or have the time for. The places we wanted to go. The people we wanted to meet. The food we wanted to eat. The adventures we wanted to take. This is bucket-list stuff, and is constantly shifting. It’s understandable to want more time to do more things, but, in fact, more incentive to live fully while we know we are here. Carpe f*ckin’ Diem, right?

The longer we live, we assume, the more likely we are to achieve our dreams and desires. And sometimes this is true. At 21, my initial diagnosis left me thinking I’d never graduate from college. A year later, I graduated with my class. At 23, just two weeks after finding out my cancer had returned, I stood next to my beautiful sister-in-law as she married my brother. I cried a good amount, most tears were of joy, but some of the salty droplets fell from the thought that I may never live long enough to get married. A year passed, and I did.

I realize some of those things can’t always be attained. I have certainly shed a tear or two over the thought of the empty bedrooms in my home that echo with the cries of babies who are not mine, and are not there. While the thought is sad, it too passes. My perspective goes beyond that. I have a lot of dreams. But if I don’t attain them, I am at peace with that. And I think part of that acceptance is the realization that it isn’t those big “achievements” that were my favorite parts of life thus far.

It’s the nitty gritty. The naughty. The unexpected. The unconventional things that are mine. And if that’s what we enjoy about life—the little things and the uniqueness of the bonds we’ve made—then maybe we can take away the bigness of death. Maybe if we break it down into the little things about it we can start to get on the same level as it. Maybe we can start to repair this broken relationship with death.

4. Do we hold a fear for those we’ll leave behind?

Currently, this is my greatest fear associated with my own death. I fear for the pain inflicted on those who will heavily feel my void. I am trying to remedy this by reminding them that my purpose here may be just that: a reminder. A reminder and an inspiration. And whatever is happening, it’s supposed to. It’s fluid and it will make sense. If I were to die soon, I know the little things people will see and think of me for.

Little jokes that will make them laugh. Spaces, patterns, and songs that will make them smile. And that is what makes us immortal: our essence. I believe that’s what we become when we die. And if I can inspire people to pursue the things that make them smile, laugh, and feel joy—feel love—that is a gift greater than I can take credit for. It gives me peace to know I will, in some way, be with them.

But, I can stare into my mothers eyes and tell her how at peace I am over a bottle of wine at lunch. And I am. But when I swivel around that table and look through her eyes, what do I see? My baby girl dying? F*ck, I can’t imagine. Nor, probably will I ever have to (which adds into the f*cked-up-ness of the thought).

I can physically feel the heaviness of my husband’s sadness as he lays his body on top of mine just to make sure I’m still there. I can run alongside my best friend and no empathy is needed, because the thought of losing her is the exact same weight as her thought of losing me. I can talk bucket-lists with my dad, who is battling Stage 3 cancer, with stipulation on both ends on how things are doing in a few months—a most unusual fate not typically shared between a father and daughter simultaneously. I can go out with my brothers or my friends and share meals, drinks, and laughs.

A big part of the problem is we continue to view death as an end—that we’ll never be able to share those same meals, drinks, and laughs again. But we wouldn’t anyways. That’s how time works. Part of making peace with death is making peace with time. Perhaps it’s the most perfect preserver of time—the relationship we had is exactly the relationship it will always be. We will always have shared that meal. We will always have shared that drink. We will always have shared that laugh. Allowing the fleeting to fleet. And letting life slip into death, in the beautiful, exact way it’s supposed to.

But, still, this is where I find sadness: in the sadness of others. I don’t like being the source of peoples’ pain. It’s the part that hurts the most. So no, this piece I am not yet at peace with. But it is a shared burden. And I believe the more at peace those I love become, the more at peace I’ll become. Which is the point of this whole thought: How do we better our relationship with death?!

I suppose a more complicated question then becomes: How do we better our relationship not only with our own death, but with the death of others? And I’m starting to think this is a full circle concept. If we better our relationship with our own death, we better our relationship with the death of others.

I think the first step is talking about it. Often the conversation is met with: “I can’t bare the thought.” But what if we did? What if we did just f*cking bear the thought? What would we do differently? How would we treat each other differently? How would we live differently? Can being friends with death make us have a better life?

I whole-heartedly believe the answer is yes.

I think as we visit and revisit each of these four major parts of death, we continue to delve deeper and deeper into a peace with it. A peace with our own death, a peace with the death of others, and a life more fully lived.

Complete Article HERE!

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Supporting a child when someone dies – Part 1

Talking about death and who can help

[T]he death of someone close is one of the hardest things anyone has to face. It can be especially difficult to help a child manage their grief while you’re dealing with your own. Although you can’t protect a child from the pain that follows a bereavement there are things you can do to help them come to terms with their loss.

Talking about death

Although you may wish to protect your child from unhappiness, avoiding talking about the person who died isn’t helpful and can cause problems in later life. Talking about death can be difficult, even for people who are familiar with it. You may worry that you will frighten your child or say the wrong thing. But it’s important to be open and to answer any questions they have as honestly as you can. What children imagine can be far worse than the reality.

  • Try to avoid telling your child not to worry or be sad. It’s healthy to get attached to people. And, like you, your child might find it hard to control their feelings.
  • Don’t try to hide your pain, either – it’s alright to cry in front of a child. It can help to let them know why you’re crying.
  • Be sure to give the child plenty of reassurance. Let them know they’re loved and that there are still people who will be there for them. A cuddle can make a big difference and make them feel cared for. It’s also a good idea to stick to a routine, if you can. This can help the child feel more secure.

Sometimes it might seem as though they haven’t heard what you’ve said or aren’t affected by it. They could also seem to move in and out of their grief – being upset at some times and not at others. This is just their way of coping and they’ll deal with what they’ve been told in their own time.

Child Bereavement UK   has a useful information sheet (PDF download) for explaining death to children. Here are some other things that may help:

Be honest

Children need to know what happened to the person that died. Try to explain in clear, simple language that’s right for their age and level of experience. You might also try giving them information small amounts at a time, especially young children, as this can help them understand. Once you’ve explained that someone has died, the details can follow.

Use plain language

Talking around the subject doesn’t help and may lead to misunderstandings. Avoid explanations such as ‘the person has ‘gone to sleep’ or ‘gone away’. They may make your child frightened to go to sleep or worry as soon as you leave the house in case you don’t come back. Even if you believe the person who died has gone to heaven this can be confusing and worrying for a small child.

Encourage questions

Be prepared for your child to be curious and to ask the same questions again and again. This can be distressing but remember it’s a part of their need for reassurance and helps them process the information.

It’s not easy, even for adults, to understand death and dying. A child’s understanding will depend on their age, gender, stage of development, family background, personality and previous experience. Think about what to say and give the same answers each time. Be led by what they want to know and don’t be afraid to tell them you don’t know the answer to something.

Reassure them

It’s common for children to feel that the person has died as a result of something they may have said or done. Explain simply how and why they’re not to blame.

Ask them to tell their story

Asking children to tell their story of the death and experience of grief will let them know they are important and that their relationship with the person who died has been recognised. It can help you to understand what they know about what happened and correct anything that’s not quite accurate. It can also help children to discover that the way they see things changes with time.

Listening to their story will also help you better understand the child’s grief. Avoid comparing it to what you think they should be feeling or overusing words like ‘time’ as a way of trying to reassure them.

What people want more than anything, whether child or adult, is control over grief, feelings, and needs. Immediate comfort, the ability to express their feelings about the loved one and stability are all important in helping someone cope.

People who can help

Each person’s grief is as individual as the person who’s been bereaved and it can sometimes be easier to deny feelings than to acknowledge them. How children respond will depend on many things including:

  • their age
  • their stage of development
  • what they’ve read or seen on TV
  • their understanding of death and dying

Sometimes two children from the same family might need completely different types of support. The relationship that the child had with the person who died can also affect how they grieve.

Take things one day at a time. If at any time you feel unable to cope remember you’re not alone. Friends, family, healthcare professionals, teachers at your child’s school and others can all help. There may also be specialist child bereavement services that you can use including Child Bereavement Network  , Cruse Bereavement Care   or Winston’s Wish  .

Alternatively there may be a local children’s bereavement service in your area – ask your GP or search online.

External websites

Care for the Family  

Child Bereavement Network  

Cruse Bereavement Care  

The Child Bereavement Charity  

ChildLine: 0800 1111 (24-hour helpline)  

DadsNet  

Dying Matters  

Grandparents Plus  

Grief Encounter  

Healthtalkonline  

Netmums  

Samaritans: 116 123 (24-hour helpline)  

WAY Foundation  

Winston’s Wish  

Complete Article HERE!

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Poet ponders life on the brink of death

Nina Riggs pens rhapsodic memoir about living with terminal cancer

By Anjali Enjeti

That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir, “The Bright Hour: A Memoir of Living and Dying,” is revelatory. The book, birthed after Riggs’ 2016 essay, “A Couch is More Than a Couch,” which appeared in the New York Times column, Modern Love, captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between.

Riggs’ great-great-great grandfather, Ralph Waldo Emerson, inspired the book’s title. “That is morning; to crease for a bright hour to be a prisoner of this, sickly body and to become as large as the World.” Riggs, who published a book of poetry in 2009 entitled “Lucky, Lucky,” was a great admirer of her literary ancestor. One particular phrase, “the universe is fluid and volatile,” in her favorite essay of his, “Circles,” helps her to wrap her mind around the parameters of her own mortality. “It allows for the idea that there are things that cannot be contained,” she writes.

Among her most referenced authors in “The Bright Hour,” though, is the 16th century French philosopher Michel de Montaigne, whose five out of six daughters, brother and best friend died prematurely. Montaigne ponders the weight of this kind of grief, and in him, Riggs finds a kind of kinship.

“I love about Montaigne that, despite roving bands of thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked. He acknowledged the terror that could come. But by considering it and allowing it in, he resolved to live with its presence.”

Riggs’ love of words was fervent, unbridled. She was a scrupulous linguist. The tones and the distinct sounds of syllables aroused in her a deep reflection.

“But the more I think about it, the more I’m struck by what a beautiful word it is – hospice,” she writes. “It is hushed, especially at the end. But it’s comfortable and competent sounding, too. A French word with Latin roots – very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)”

Her brief, melodic chapters, many only a page long, straddle the genres of prose and poetry, much like Emerson’s do.

Last year, Paul Kalanithi published “When Breath Becomes Air,” a memoir about living with terminal lung cancer. Kalanithi died at age 37, and like Riggs, lived for only approximately two years after his terminal diagnosis. Kalanithi’s book has been widely praised; Riggs herself deemed it “gorgeous.” “The Bright Hour” equals “Breath” in clarity, nuance and artistry. Like Kalanithi, Riggs makes acute examinations of the gradations of autonomy and agency while in treatment, and the ways in which relationships grow and reshape themselves in the face of a finite timeline.

Nina Riggs

“The Bright Hour” is also a precise study of how chronic and terminal illness affects members of the family. Early in the book, at a time when Riggs’ own cancer appears to be a relatively self-contained disease and her prognosis is good (“one small spot,” Riggs repeats like a comforting mantra), Riggs’ mother Jan is in treatment for terminal multiple myeloma. Riggs spends her time in between chemo infusions taking care of Jan. When Jan refuses further treatment, sorrow washes over Riggs. “See: She is dying,” she writes. “It is weird to write that – like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her. Eight years of cancer… My mom: my map, my Sistine Chapel, my ‘Lonely Planet,’ my beautiful ruin, my volcano.”

And it’s Riggs’ mother who, in many respects, models for her daughter the kind of perspective that Riggs later adapts when she learns that her own cancer is metastatic and incurable. “‘Dying isn’t the end of the world,’ my mother liked to joke after she was diagnosed as terminal…There are so many things that are worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into the measuring cup.”

Riggs was a wife and mother of two young sons, and as her illness progresses, she contemplates, keenly, the beauty and ferocity of the love she has for them. “When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up pickup on the side of the dark highway – filled with safety and Stevie Wonder and okay-ness.” With her dear friend who is also parenting young children while living with terminal cancer, she exchanges hilarious texts about how they might monitor their children from the grave, as if “dying makes us more powerful parents than the living version of ourselves.”

Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace. “We are breathless but we love the days,” she writes. “They are promises.”

Complete Article HERE!

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I’m terrified of dying — and, apparently, so are you

Every Sunday Mindy Gillenwater volunteers for hospice care at the Robison Residence. Over the course of four years she as served as a companion to many patients like Kevin Sweat.

by Richard C. Gross

[W]hen I once conveyed concern to my father about his eventual death, his matter-of-fact response was, “We all die.”

And he did. At 89, of complications of pneumonia. Some say it was the best way to greet the hereafter: He went to sleep, into a coma, helped by doctor-administered doses of morphine. Yet when the ambulance initially came for him at the assisted living facility, his light brown eyes widened with fear.

I’m deathly afraid of dying. The idea of no more Richard weighs on me the older I get, and I’m getting up there. There’s so much more to do, so many more people to meet, so much to see, so much to live for, so much more to know. But there is no cure for aging.


 
I learned my fear of dying is not irrational; I have lots of company.

“Death is still a fearful, frightening happening, and the fear of death is a universal fear even if we think we have mastered it on many levels,” wrote Swiss-American psychiatrist Elisabeth Kübler-Ross in her seminal 1969 book, “On Death and Dying.”

Cultural anthropologist Ernest Becker, in his Pulitzer Prize-winning 1973 book, “The Denial of Death,” writes that “anxiety about death is a constant fact of life for everyone and that it is the underlying cause of the many other fears and phobias people experience.” Fears of being alone or stuck in a confined space, for example, are substitutes for fear of death.

Maybe singer Neil Diamond, now 76, expressed those very fears in the lyrics of his 1971 song about loneliness, “I Am … I Said:”

“But I got an emptiness deep inside/And I’ve tried/But it won’t let me go/And I’m not a man who likes to swear/But I never cared/For the sound of being alone.”

Alone or not, one’s mortality and the inevitability of death becomes more real the older we get, especially as relatives, friends and onetime coworkers — people with whom we’ve spent many years — die, shrinking our world, reminding us with a jolt that one day we will join them. Attending funerals becomes commonplace.

Seeking others for opinions about the fear of death, I attended a 90-minute seminar, called “Santa Fe Doorways,” hosted by Denys Cope, a registered nurse for nearly 50 years, including about 30 of them in hospice care. About 30 elderly people attended, all but three of them women; we sat in a wide circle in a windowless room in a retirement home.

Ms. Cope said, “We are all hard-wired to fear death,” and threw out a question: “When you think about death, what matters to you most?”

“To be able to die resting in God’s mercy,” replied one woman, acknowledging she is Christian.

Deep faith in one’s religion must be potently comforting, providing virtually certain assurance of peace as death approaches, perhaps, as another woman said, because of an abiding belief in an afterlife. Enviable. And for the secular among us?

One white-haired man, who experienced a near-death episode, approached the subject lightheartedly, maybe because he appeared so organized. He said he since has written his own obituary, letters to his loved ones and has paid for his cremation. This is a man who will meet his maker head-on.

Another woman took an amazingly positive approach toward death, reveling in its opposite: life.

“What I love about death is thinking how I’m going to live,” she responded to Ms. Cope’s question.

I’m not as sanguine and stubbornly turned back to Becker’s “Denial of Death” to reinforce my feelings about dying. For me, he hit a bull’s eye:

“This is the terror: to have emerged from nothing, to have a name, consciousness of self, deep inner feelings, and excruciating inner yearning for life and self-expression — and with all this yet to die. It seems like a hoax.”

Ms. Cope has another way of looking at death.

“When first faced with the fact they are dying, many people experience a tremendous amount of fear,” she wrote in her 2008 book, “Dying: A Natural Passage.” “Often, I am told, it is not death but the process of dying that is frightening. … As long as we remain attached to this world and to our life, it is a struggle to die. … When we surrender to the process of dying, there is an incredible inward flow of peace and grace.”

I hope I can surrender.

Complete Article HERE!

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Helping Hands Offer Support at the End of Life

A growing network of ‘death doulas’ is gaining popularity while caring for patients and their families.

By Mary Kane

[E]lena Wertheimer still remembers the panic she felt last year after her terminally ill father, Vincent Battista, was released from the hospital to spend his last days at his Wyckoff, N.J., home. She didn’t know how to prepare. She wasn’t sure how to care for him—or herself. “It’s hard to think straight,” she says. “You’re under extreme stress.”

On the advice of friends, Wertheimer sought help from an end-of-life doula, a new type of caregiver for dying patients and their families. Also known as death doulas, they offer support through all the stages of dying, similar to the roles that birth doulas play during pregnancy and delivery. Doulas discuss a dying person’s wishes and concerns, and they create memory books for the family. They organize vigils and coach relatives on the signs of dying. Some run errands, organize paperwork or even plan home funerals.

Wertheimer, 49, was very close to her father, and her doula, Janie Rakow, helped her overcome her fear of watching him die. Rakow encouraged her to sit with him and hold his hand. Rakow gently guided her to his bedside after he passed, and Wertheimer and other family members spent four hours there, crying, laughing and telling stories. Rakow ensured they weren’t interrupted. “It was very, very special,” Wertheimer says. “I saw him finally not suffering. My last vision of him was peaceful. It made all the difference in the world.”

Doulas are gaining in popularity amid a growing effort to improve the end-of-life experience for patients and families, particularly when someone dies at home. Doulas cover “a huge gap” in time and resources that busy hospices can’t always provide, Rakow says. A hospice team advises families on medical care for the dying; doulas guide the dying and their loved ones through the end-of-life process, offering mostly emotional and other nonmedical support.

Finding a Doula

If you’re thinking of using a doula, you may find the search confusing. There are death midwives, mourning doulas, death coaches and more. Some are volunteers; others charge hourly rates of $25 to $100 or offer “Vigil Packages” costing $1,000 and up. There is no regulatory oversight or standard licensing, training or certification. “It’s still kind of the Wild West out there,” says Patti Urban, a doula in Guilford, Conn.

Insurance typically doesn’t cover costs for a doula. Before hiring one, check whether your local hospital or hospice has a volunteer doula program. But be sure the doula can provide all the hours you want.

The International End of Life Doula Association (www.inelda.org) is compiling an online state-by-state directory of doulas it has trained. The nonprofit has provided the training for hospitals and hospices in California, Indiana, New Jersey and New York, and it will train aspiring doulas in 12 cities this year, says Rakow, the association’s president. Doulas will also work with you in hospices, hospitals, assisted-living facilities and nursing homes.

Decide what you want from a doula. Do you need someone to organize end-of-life documents? Or to provide a 24-hour presence at the bedside? Set up a consultation, advises Merilynne Rush, co-founder of the Lifespan Doula Association, in Ann Arbor, Mich. Be sure your doula’s personality is a good fit. You might prefer a take-charge attitude or a soothing presence.

Most doulas charge an hourly rate. Start out with a few hours before making a larger commitment, Rush says. Ask for a contract spelling out services and fees.

Review a doula’s qualifications and training, including criminal background checks and previous experience. Some attend weekend seminars, while others serve a minimum number of vigil hours and pass exams to become certified.

Other groups that train doulas include MourningDoula.com and the Lifespan Doula Association, which details standards of practice at www.lifespandoulas.com. Doulagivers.com offers a free webinar to learn the basics of caring for a dying loved one.

Complete Article HERE!

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The Symptoms of Dying

By SARA MANNING PESKIN, M.D.

[Y]ou and I, one day we’ll die from the same thing. We’ll call it different names: cancer, diabetes, heart failure, stroke.

One organ will fail, then another. Or maybe all at once. We’ll become more similar to each other than to people who continue living with your original diagnosis or mine.

Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions.

Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person. They are well-treated with medications. With hospice availability increasing worldwide, it is rare to die in pain.

While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect.

The Death Rattle

“The graves are full of ruined bones, of speechless death-rattles” (Pablo Neruda)

We suspected the patient wouldn’t survive off the ventilator. A blood clot had crawled up one of the vessels in the back of his brain, blocking blood flow to the area that controlled alertness. He would die from not being awake enough to cough.

The beat of the death rattle began when the breathing tube was removed and continued until life was done. It was a gurgling, crackling sound, like blowing air through a straw at the bottom of a cup of water. The average time between the onset of death rattles to death itself is 16 hours. For him, it was six.

The death rattle is a symptom of swallowing dysfunction. Normally, our tongue rises to the top of the mouth and propels saliva, liquid or food backward. The epiglottis, a flap in the throat, flops forward to protect the swallowed substance from entering the airway.

In the dying process, the symphony of swallowing becomes a cacophony of weak and mistimed movements. Sometimes the tongue propels saliva backward before the epiglottis has time to cover the airway. Other times, the tongue fails to push at all and saliva trickles down the airway to the lungs in a steady stream. The death rattle is the lungs’ attempt to breathe through a layer of saliva.

Despite the sound’s alarming roughness, it’s unlikely that the death rattle is painful. The presence of a death rattle doesn’t correlate with signs of respiratory distress.

As often happens in medicine, we treat based on intuition. To lessen the volume of the death rattle, we give medications that decrease saliva production. Sometimes, we are successful in silencing the rattle. More of the time, we placate our instinctive concern for a noise that probably sounds worse than it feels. Without hurting our patients, we treat the witnesses who will go on living.

Air Hunger

“You villain touch! What are you doing? My breath is tight in its throat” (Walt Whitman)

The patient was a wiry woman in her 80s who had smoked for seven decades. Cigarettes turned her lungs from a spongelike texture to billowing plastic bags that collapsed on themselves when she exhaled. It was like trying to scrunch all the air out of a shopping bag. Air got trapped.

Air hunger — the uncomfortable feeling of breathing difficulty — is one of the most common end-of-life symptoms that doctors work to ease.

The treatment? Opiates, usually morphine.

People sometimes ask why the treatment for painful breathing is a medication that can depress breathing. You’d guess that opiates would worsen air hunger.

The answer hinges on defining why air hunger is uncomfortable in the first place.

Some researchers think the discomfort of air hunger is from the mismatch between the breathing our brain wants and our lungs’ ability to inflate and deflate. Opiates provide relief because they tune our brain’s appetite for air to what our body can provide. They take the “hunger” out of “air hunger.”

Others believe that the amount of morphine needed to relieve air hunger may have little effect on our ability to breathe. Since air hunger and pain activate similar parts of the brain, opiates may simply work by muting the brain’s pain signals.

The patient traded her cigarettes for a breathing mask when she came to the hospital. She quit smoking for the umpteenth time and made plans to go home and live independently again. A few days later, her thin frame tired. She died in hospice.

Terminal Agitation

“Do not go gentle into that good night” (Dylan Thomas)

My grandfather screamed two days before he died. “Open that door and let me out! Right now! It’s a travesty! Open that door!”

It was the scream of a lost child. My grandfather’s eyebrows, which had been lost over the years from the outside inward so that only a centimeter of long gray hairs near the middle remained, tilted toward each other.

Until then, we were preparing for missing and absence. Not for an agitated delirium. Not for rage.

A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens.

Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented.

There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual.

People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

Complete Article HERE!

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End-of-life care: when CPR is wrong

Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

[T]he modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!