01/12/18

Signs of the Journey Towards Death

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Recognizing the dying process

The dying process usually begins well before death actually occurs. Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, and nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As a person comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.

As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death

Behavioral and Psychological Changes: As a person begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings.

They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories.

They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

Physical Changes: The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engage in activities they once enjoyed. They no longer need food nourishment. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes: This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people who aren’t there. Often times these are people who have already died. Some may see this as the veil being lifted between this life and the next.

The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes: The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

  • The body temperature lowers by a degree or more.
  • The blood pressure lowers.
  • The pulse becomes irregular and may slow down or speed up.
  • There is increased perspiration.
  • Skin color changes as circulation is diminished. This is often more noticeable on the lips and nail beds as they become pale and bluish.
  • Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
  • Speaking decreases and eventually stops altogether.

Journey’s End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed, talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breaths followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.

Complete Article HERE!

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01/9/18

This Was Not the Good Death We Were Promised

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When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!

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12/14/17

People are hiring doulas to help them die

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By Molly Shea

Chad Lewis charges $20 to $25 an hour to assist the gravely ill and their families.

When Chad Lewis’ mother passed away seven years ago from complications from diabetes, he couldn’t stop thinking about her death. “It wasn’t loving and sweet,” he says. “It was chaotic and angry and scary.”

So Lewis, a 39-year-old who lives in Astoria, set out to find a better way to process the end of life, ultimately making a career shift from Broadway stage manager to death doula.

Doulas who aid women in giving birth have been trendy for years, but now a different type of support person is helping people navigate life’s other major passage. Dying people and their loved ones are hiring death doulas to help them coordinate end-of-life care and vigils, plan funerals and provide a sympathetic but unattached ear.

The profession first came into being in the early aughts and is growing increasingly popular. In 2014, Suzanne O’Brien launched the New York City-based Doulagivers, an online training program for death doulas.

“I can hardly keep up with demand,” says O’Brien, who also holds monthly seminars at an Upper West Side branch of the New York Public Library.

The process usually starts with a patient deciding how they want to die and outlining that with the doulas.

“It’s similar to a birthing plan … Where [do] you want to die? What kind of room you want to die in? What [do] you want to be looking at? What [do] you want it to smell like?” says Shelby Kirillin, 41, a Richmond, Va.-based death doula. She charges between $1,000 and $3,000 as a retainer fee, and asks for payment upfront to avoid chasing down money posthumously. She’ll also work pro bono if a situation merits it.

The “scary” death of Chad Lewis’ mother led him to become a doula.

“I had one young girl say she wanted to die in a yurt,” says Kirillin of a client who’s currently planning her own death. The girl’s cancer condition makes a yurt too impractical, so Kirillin is getting creative. “We decided on mosquito netting over her bed, and twinkle lights to look like stars.” After she takes her last breath, her loved ones will put wildflowers in her hair.

Death doulas also help out after someone passes. Lewis, who charges $20 to $25 per hour, likes to create a basic plan to take care of issues such as child care, grocery shopping and bill payment, to clear up mental space for grieving families.

And more than anything, the professionals help patients process what they’re going through.

“Families buffer pain — you hate to see people you love in pain. And doulas aren’t buffers,” says Kirillin. “Instead of saying, ‘OK, let’s see if we can give you meds,’ I’ll say, yeah, ‘I bet you are in pain. Tell me about it — what does it feel like?’”

When Richmond resident Mel Titus’ best friend of 31 years, Kim, was entering the final stages of her battle with cervical and breast cancers last year, they were introduced to Kirillin.

They were skeptical at first, but Kim (whose last name is being withheld for personal reasons) decided on a death doula so she could manage her death the way she did her life. “She was a processor,” says Titus. “She really liked that she could come up with a plan and do things a certain way.”

And for Titus, Kirillin provided emotional support during an impossible time. “I would have tough days, and I’d call Shelby, and she’d walk me through it,” she says.

Kirillin helped the duo plan Kim’s visitor schedule, and what music they’d play and books they’d read in the final days. Taking care of logistics freed them up to reminisce about Kim’s life, and even laugh about how things were going. “We actually had some funny moments, believe it or not,” says Titus. “It’s sad, but it can be a happy thing, too.”

Complete Article HERE!

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11/29/17

Illusions While Dying

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In the hospital one afternoon, after unsuccessful surgery to remove her tumor, my mother drifted in and out of sleep. I sat on a sofa in her room with light from the window streaming in as I read email. My mother began talking to someone. I looked up.

My mother was an attorney. She dealt in realities. For most of my life, I knew her as a woman with few illusions. She did not kid herself, and she did not let me kid myself. She told my sister and me, when we complained about a situation, “Life isn’t fair.” So when she was diagnosed with pancreatic cancer, my mother approached it matter-of-factly because it was a matter of fact no one disputed. She researched pancreatic cancer online, came to terms with her odds and spent the next seven months maintaining as much control as she could.

Yet illusions sometimes came to her in those months. In that hospital room, she wasn’t talking to me but to people standing on the other side of her hospital bed, people invisible to me. They weren’t there, but she saw them. I couldn’t make out my mother’s words, only that there existed a pleasant back-and-forth going on. I was the first witness to her illusions.

I knew that, as a child, my mother had spent many days in the hospital for surgeries to correct bilateral club foot so she could walk. Her memories of that time included an imaginary friend whom she named after the model of hospital bed in which she had lain. As I watched her that day, I wondered whether John Standard had returned to her after all those years.

A few minutes later, my mother turned to me, fully alert. I asked whether she remembered the conversation she’d just had. Friends she hadn’t seen in a long time, she said, without going into detail. Then she tilted her head and added, “But they weren’t really here, were they?” I admitted that, no, they hadn’t been here. She said, “Well, it was a good conversation.”

My mother’s illusions were not delusions. She was not misled. The word “illusion” comes from the Latin “ludere” meaning “to play.” The word has longstanding negative connotations, as in a deception. But my mother’s illusions were her mind at play.

How different that was from my father’s delusions years earlier, when he was in the hospital undergoing cancer treatment. His gift balloon had become a spaceship, and he described to my mother a terrible war around him. He was caught up in it, afraid. One of the medications he’d been prescribed caused the delusions, and they subsided once it was stopped. But he said the scene had been so real that he couldn’t not believe it at the time. It still felt real after he knew it wasn’t. My mother could deal with anything in the physical world but couldn’t imagine how she would manage if my father lost his mind. By that, she meant his mind losing touch with reality. And she meant that his physical deterioration was enough for her to bear.

Later in her illness, at home, my mother began seeing medieval people on a hillside in her own bedroom. She enjoyed watching them, robed in their dresses and breeches, and she especially enjoyed the music they played. Flutes and mandolins. They even brushed large ostrich feathers and long veils over her skin. She didn’t know when these musicians would show up, but she welcomed them whenever it happened. She knew no one else saw these people or heard this music, and she didn’t care that it wasn’t real. I had some concerns but didn’t know what to do with them. I didn’t talk about these illusions in my book “Tumor” because I didn’t yet know how. There are so many concerns when someone is dying of cancer.

My mother and I talked with her oncologist about this new development, wondering whether such a thing was common in patients with cancer, perhaps the result of wasting or dehydration, two serious physical concerns at that point, or perhaps a side effect of one of the medications or chemo drugs. The oncologist asked several questions.

“No,” my mother said. “I’m not afraid of them. No, they don’t try to harm me. No, they don’t make me do things.”

The midsummer-night’s-dream people never talked to her and she never talked to them. She explained this arrangement as if such conversation would be crazy. Then, she said, “The music makes me happy.”

The three of us — my mother, her oncologist and I — decided this illusion was the least of our worries, that, in fact, medieval singers on a hillside were no worry at all. She had nothing to lose by listening, as long as she could hear the rest of us too. I was surprisingly relieved the oncologist did not want to treat this cognitive symptom because often physicians want to correct what deviates from the norm. He considered the larger context, the limited time, and told my mother to let him know if she stopped enjoying these visions.

This illusion, of course, might be considered a hallucination. The word “hallucination” comes from the Latin meaning “to wander in the mind,” originally akin to dreaming or allowing one’s thoughts to ramble. Hallucinations are now considered deceptions, not merely stray thoughts or daydreaming. To be sure, they can result from serious illness such as schizophrenia, dementia, epilepsy, Parkinson’s disease or migraines and make it difficult to function day to day. So hallucinations also came to be defined medically as distortions of sensory perceptions that the person experiencing them takes as real experiences. My mother, then, wasn’t really hallucinating because, though she accepted her experiences as real in her mind, she knew the people she saw and heard were not real in the world. She liked the touch of ostrich feather on her skin but didn’t think it existed in the world beyond her imagination.

Here was a woman who’d always shopped for a new outfit by picking what was paired on the rack because she was unable to imagine original combinations on her own. When my mother’s body weakened, when her body betrayed her, her mind said, “Let loose and enjoy the music.”

Even in that first observation of my mother’s conversation with friends who were not there, I was not upset that my mother was losing touch with reality or becoming less herself because she seemed at ease. Though they were unexpected and out of the ordinary, I became grateful for the odd joy my mother’s illusions gave her. What a practical thing for her mind to have done. I wish I knew how she did it. Any of us may someday face a similar illness. How fortunate my mother was able to conjure up happiness all on her own without denying the harsh reality of her condition. May we each find or conjure some music in our minds when we need most to hear it.

Complete Article HERE!

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11/26/17

Families turn to death midwives for help with final passage

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Anna Benton, of Milwaukee, left, Georgette Paxton, of Madison, center, and Jennifer Snow, of Waunakee, look over Heather Ockler, of Monona, who is playing the role of a dying person wrapped in a shroud during a home funeral demonstration. It was part of a death midwife class taught last month by Sharon Stewart, who helped aspiring death midwives practice skills such as washing and shrouding a body. Death midwives, sometimes called death doulas, are increasingly helping families prepare for and navigate the death of loved ones, in addition to or instead of hospice care and funeral homes.

By DAVID WAHLBERG

Before Valli Warren’s husband died last year after a long illness, the Stoughton couple knew they wanted a home funeral and green burial.

But they weren’t sure how to make those things happen. They turned to Sharon Stewart, who delivered ice packs to preserve the body, shared videos about how to wrap it in a shroud and taught pallbearers how to carry it out of the house on a board.

Stewart also helped Warren file paperwork, including a permit letting her transport her husband to Circle Cemetery, near Barneveld, where he was laid to rest without being embalmed or using a casket or vault.

“She walked me through every phase,” Warren said.

Stewart is a death midwife, a new kind of occupation that provides emotional, spiritual and practical support to families before and after death — in addition to, or instead of, hospice care and funeral homes.

The service, which has emerged around the country over the past decade, is analogous to what birth midwives do compared to obstetricians. Some who offer the assistance call themselves death doulas or end-of-life midwives.

‘Back to their roots’

Whatever the title, the providers say they help people “take back” the death process from hospitals and funeral homes. Services include leading family discussions about death planning, sitting vigil with people as they die, helping family and friends wash the body afterward and aiding in tasks such as selecting memorial cards, sending obituaries to newspapers and closing social media accounts. It often involves home funerals or green burials.

“We’re taking families back to their roots, the tradition of when we were born and when we died in our own homes,” said Stewart, a former detective who lives near Brooklyn, south of Madison. “We laid in honor in our parlors, and the community came together to provide care for the family.”

Liz Humphries, a former birth midwife and hospice nurse who recently added an end-of-life doula service to Seasons of Life, her senior care company in Middleton, said, “It’s about reclaiming a really sacred and beautiful human experience.”

Mary Paulauskis, a former hospice nurse from Madison, has added what she calls end-of-life transitions counseling to her business, Mindful Awakenings, through which she teaches meditation.

Paulauskis focuses on helping people think about who and what they want around them as they die. She also coaches loved ones on what to say to a dying person and how to interact — letting them know it’s OK to lie next to the person if they want to, for example.

“It’s creating a space of whatever the patient said they want,” Paulauskis said.

Many people don’t realize that there are several ways to dispose of bodies without embalming, including new, greener types of cremation, said Angie Buchanan, a death midwife in Waukesha who trains death midwives around the country. She informs clients of the options and guides them through their choice.

“We’re the water that runs between the rocks of the medical profession and the funeral industry,” Buchanan said.

Dr. Toby Campbell, chief of UW Health’s palliative care program and a board member of Agrace Hospice and Palliative Care in Fitchburg, said he understands why death midwives are catching on. He said hospice care typically includes two or three visits a week from a nurse or social worker, and an occasional call from a doctor.

“That leaves about 99 percent of the time you and your family are on your own,” Campbell said. “That’s a big space. There are giant gaps between the health care system and death, even including hospice.”

Jim Olson, president-elect of the Wisconsin Funeral Directors Association, said caring for a body after death and managing a funeral are big jobs. Most people will continue to seek help from funeral directors, he said.

Death midwifery is “another alternative for families, which we think is great,” said Olson, who owns Olson Funeral Home and Cremation Service in Sheboygan. “Am I afraid it’s going to affect my business? No, absolutely not.”

There is no licensure or government certification for death midwives. Experienced practitioners, such as Stewart and Buchanan, offer training, as does the New Jersey-based International End of Life Doula Association, which held a session in Madison last year.

Many training programs offer their own certification. The burgeoning field is in a similar situation to massage therapy in the 1990s, before doctors pushed for its regulation, Buchanan said. In Wisconsin, certification for massage therapists started in 2003, with licensure beginning in 2010.

Fees for death midwives vary. Buchanan said she charges $100 for a consultation and up to $2,000 for services covering the whole death process. Stewart has accepted donations of $100 or $200 from some clients, but she doesn’t plan to establish rates until she retires from her day job, at the state public defender’s office, and devotes more time to death midwife duties.

Paulauskis said she plans to charge $25 to $50 for a counseling session and negotiate rates for other services but let people pay what they can. An academic adviser at the UW-Madison School of Social Work, she plans to continue making her living in other ways.

Humphries, who started her end-of-life doula service last month, said she might charge $40 to $100 an hour but offer a sliding-fee scale for people with low incomes.

Humphries is also an organizer of Walking Each Other Home Madison, a group that started in 2014 to help people carry out home funerals and green burials. People can rent the group’s home funeral kit, which includes a body board, ice packs, soap, lotion, diapers, latex gloves and small bags of rice to place over the dead person’s eyes to keep them closed.

‘The personal touch’

Stewart, who has long volunteered at Monroe Clinic’s hospice program, said she saw the need for a more personal death service after her brother died in a car crash at age 19. She was 21.

Police came to the house in the middle of the night, told her mother her son was dead and left. Stewart wanted to see her brother’s body before he was embalmed, but the funeral director wouldn’t let her, she said.

“There had to be a better way,” she said.

Later, as a detective for the Lafayette County Sheriff’s Department in Darlington, Stewart tried to deliver death notifications with more sensitivity. But she wasn’t able to do all she wanted to help grieving families. After a shoulder injury forced her to retire, she discovered death midwifery.

“I thought, ‘This is it. This is the personal touch. This is the attention that families need,’ ” she said.

At a death midwife class she taught last month, Stewart told students to help dying people reconcile with others if they ask, separate arguing family members at the bedside if necessary and encourage loved ones to say goodbye and leave the room if the dying person wants to die alone.

“Your job as a death midwife is to be an advocate for that dying person,” she said.

When Laurie Larson’s husband, Dennis Presser, died suddenly from a heart attack at age 54 four years ago, Stewart helped Larson and her two teenage children navigate the chaos.

Stewart joined Larson when she met with a funeral director to plan the funeral, which took place at the funeral home.

She organized an intimate gathering for family and close friends at the crematorium, with candles, incense and music. As Presser’s body lay inside an open cardboard cremation box, people read poems, told stories and colored the box. Then they placed him in the chamber, and Larson hit the ignition switch.

“I would never have had the energy to create that beautiful ritual,” said Larson, of Madison. “Sharon helped me in so many ways that I never would have thought I needed to be helped.”

Warren’s husband, Spencer, died at 64 from amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease.

Stewart helped the couple carry out their wishes. His body remained at home for three days, instead of being whisked off to a funeral home. “I had time to be with him; it was very healing,” Warren said.

As family and friends came for the home funeral, volunteers changed ice packs beside his body as he lay on their bed for viewing. Warren drove him to Circle Cemetery, where gatherers sang and played guitar before shoveling dirt over his shrouded body.

“It was the most natural thing I’ve ever experienced,” Warren said.

Complete Article HERE!

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11/15/17

What It’s Like to Learn You’re Going to Die

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Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

Nessa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisisWhether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

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