04/22/18

Hospice is different from palliative care but both are considered ‘comfort care’

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Comfort care at the end of life means managing symptoms, such as pain, anxiety and shortness of breath, says Janet Burda, advance practice nurse at Palos Community Hospital.

By Donna Vickroy

Despite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.

Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.

When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.

Is comfort care not medical care? Is it a form of hospice? A form of palliative care?

Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.

“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.

Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.

The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”

Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”

Palliative or hospice?

Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.

Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.

Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”

Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”

The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”

Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.

Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.

“A patient in hospice receives a lot more services,” Telleen said.

Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.

“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.

“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”

While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.

To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.

“Old age is not a qualification necessarily,” she said.

All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.

To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.

“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”

Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.

“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.

All end-of-life care should begin with conversation, Burda said.

People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.

“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.

“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.

Advanced directives

Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.

She said the former First Lady’s passing has sparked conversation about end-of-life planning.

“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”

Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.

“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.

“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.

Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.

Complete Article HERE!

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04/20/18

Death doula turns grief into guidance

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Last fall Catherine Hayes’ sister died in a helicopter accident; on April 26 she launches The Departure Lounge

After her sister’s untimely death, Lynn Valley resident Catherine Hayes has started a grief group called The Departure Lounge, set inside a large lodge cabin along the side of Hunter Creek.

By Maria Spitale-Leisk

These facts Catherine Hayes will always remember. It was the day her sister, her rock, was gone.

“She could always rally me in ways that nobody else understood,” says Hayes. “I had her for 43 years, you know, protecting me. Forty-three years – some people never have that, right?”

On Oct. 1 the early fall sun was warming Hayes’ face while she was singing her sister Karen Coulter’s praises to a mutual friend.

Coulter had already earned her engineering ticket to fix helicopters, but she wanted to go further.

“She had always wanted to fly,” says Hayes.

Coulter found her wings and got on with the air ambulance service in Alberta.

She soon found her way back to B.C. and took a job in Campbell River last summer. Coulter was in her element and loving life, according to her sister.

Nothing could prepare Hayes for the call that evening.

Friends were over for dinner and an unfamiliar number was illuminating her phone. Coulter’s helicopter had crashed in a remote forested area on the island, Hayes heard.

She tried to remain calm under the shocking circumstances, while hurrying to catch the next ferry to the island to be by her sister’s side.

In her mind Hayes thought: “I’m just going to go there and clean her up a bit and she’d be OK.”

On the ferry ride over Hayes had her life turned upside down.

“It is like being completely sucker punched just for no reason,” describes Hayes.

Her partner, Shawn, had only left her side momentarily to grab a coffee. Hayes’ cousin delivered the news over the phone while she was alone surrounded by strangers.

“He just said: ‘She died.’”

Her phone dropped and Hayes started screaming. The worst was yet to come.

When she got to Victoria, her sister wasn’t there, which sent Hayes on a wild goose chase.

“We couldn’t find her for a long time,” she recalls.

At first Hayes was told Coulter would be in Victoria. She wasn’t there. Maybe Comox?

Eventually, Hayes learned her sister’s body was still in the helicopter amongst the dense bush in pitch-black darkness.

The coroner wouldn’t arrive until daylight. It’s a scene that hauntingly plays over again in Hayes’ head.

Those first few days were the hardest. Hayes was presented with impossible questions that she couldn’t possibly prepare for.

Did she want the clothes her sister was wearing when she died?

“How do you respond to that?” says Hayes.

She would have recurring flashbacks of trying to reach her sister, but just going around in circles.

There was no beginning and end to her days – time blurred together into one vivid nightmare.

Hayes tried a host of remedies to turn her brain off at night – prescription and non-prescription – to no avail.

In the long days and months after the accident, along with overwhelming grief, Hayes had this nagging fear.

“Who’s going to go next? Is it going to be me? Is it going to be my son?”

The pain and anxiety became unbearable. Hayes compares it to being caught in an avalanche – you don’t know which way is up.

“And every time you do get a breath – you’re slammed again,” she says.

There is no textbook answer for how to handle grief. Hayes had someone say to her, you can’t be sad forever. But Hayes couldn’t see it any other way.

A framed collage of Coulter’s life leans up against a wall in Hayes’ kitchen. She curated the collage with some pictures discovered while cleaning out Coulter’s purse.

There’s a faded photo booth strip of the sisters goofing around in their teenage years.

“She probably even permed my hair and made me do it,” says Hayes, summoning a smile.

Hayes had no idea her sister had held on to the memento all these years in her wallet.

It’s these precious gifts from beyond the grave that buckle Hayes’ knees, often in the most unlikely places and without warning.

With the facts around her sister’s death seared into her brain, Hayes forgot how to take care of herself.

She says she felt like she was walking on her hands and eating with her feet. Nothing felt normal.

It was while hiking in Lynn Headwaters with a good friend that Hayes saw a faint light at the end of the tunnel.

The friend dropped the term “death doula” and Hayes was intrigued. She went home and immediately googled it.

“It was so clear to me that this is what I’m supposed to be doing,” says Hayes.

Except the timing for Hayes becoming a certified death doula was a little off, she admits.

You’re not supposed to take the program when you’re in the throes of grief, but Hayes pushed through to the other side.

She was a student learning about grief when she had already aced the painful exam.

Hayes took a three-month, end-of-life doula program overseen by the Conscious Dying Institute out of Colorado.

The serene setting for the course was an old brick building on the west side of Vancouver, with floor-to-ceiling windows and plenty of natural light.

Just like a birth doula, a death doula maps out the journey according to a personalized plan.

The doula helps a person with anything that might “flare up” during those last months, from tying up loose ends, to mending fences with a loved one, to pain management, to after-death arrangements.

Hayes said some people will take two weeks to answer the questions “because it really causes you to dig deep.”

This end-of-life direction goes deeper than a will or a medical representation agreement.

Families often hire a death doula a few months out from the main event.

A plan is made, called Your Best Three Months.

The doula helps their client check off items on their death wish list, covering off five elements of life from the spiritual to the physical.

Hayes took the test herself, as part of her training. One of the questions she faced was: While you’re still physically able, what do you want to do?

Hayes learned she wants to climb the Eiffel Tower. Step 1 – how is she getting there? She would have to budget her finances, take time off work, book a flight and find a place to stay.

Hayes took her travel planning one step at a time – just like her grief journey.

Half a year after her sister’s sudden death, Hayes is starting to put one foot in front of the other again.

She’s now a certified end-of-life doula and has started a grief group, called The Departure Lounge. The first meeting is April 26, set in a large log cabin with a fireplace nestled alongside Hunter Creek in Lynn Valley.

The guest speaker that evening will be her stepsister, Rev. Colleen Tanaka, who helped pull Hayes out of the grief fog.

There will be guided meditation. For people who want to share, they can talk briefly about their experience with grief. Afterwards, attendees can mingle together over coffee and tea.

It’s almost like matchmaking for the bereaved. After being introduced, Hayes is hoping some people will group up in the community on their own.

Hayes said her unfortunate experience makes her relatable to others who are grieving.

She’s already had an overwhelming response – more than 100 emails from people wanting to share their personal story of grief, including a dad who lost both sons in drunk driving accident.

“It’s like all of sudden I got this street cred,” she says.

Now that she’s getting stronger, Hayes wants to help as many people as she can. “We learn all kinds of things in school but there is nothing that teaches us about death and grief,” she says.

Hayes cites a Gord Downie quote: “Let’s turn our faces toward the sun and get whatever warmth there is.”

This November for her 45th birthday, Hayes will board a plane to Paris and soar towards the sky.

Complete Article HERE!

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04/18/18

Your Body is a Teeming Battleground

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It’s time to rethink the quest to control aging, death, and disease—and the fear of mortality that fuels it.

By Barbara Ehrenreich

I went to medical school, at least in part, to get to know death and perhaps to make my peace with it. So did many of my doctor friends, as I would find out. One day—usually when you’re young, though sometimes later—the thought hits you: You really are going to die. That moment is shocking, frightening, terrible. You try to pretend it hasn’t happened (it’s only a thought, after all), and you go about your business, worrying about this or that, until the day you put your hand to your neck—in the shower, say—and … What is that? Those hard lumps that you know, at first touch, should not be there? But there they are, and they mean death. Your death, and you can’t pretend anymore.

I never wanted to be surprised that way, and I thought that if I became a doctor and saw a lot of death, I might get used to it; it wouldn’t surprise me, and I could learn to live with it. My strategy worked pretty well. Over the decades, from all my patients, I learned that I would be well until I got sick and that although I could do some things to delay the inevitable a bit, whatever control I had was limited. I learned that I had to live as if I would die tomorrow and at the same time as if I would live forever. Meanwhile, I watched as what had been called “medical care”—that is, treating the sick—turned into “health care,” keeping people healthy, at an ever-rising cost.

In her new book, Barbara Ehrenreich ventures into the fast-growing literature on aging, disease, and death, tracing her own disaffection with a medical and social culture unable to face mortality. She argues that what “makes death such an intolerable prospect” is our belief in a reductionist science that promises something it cannot deliver—ultimate control over our bodies. The time has come to rethink our need for such mastery, she urges, and reconcile ourselves to the idea that it may not be possible.

Ehrenreich is well equipped for her mission; she has a doctorate in biology and years of social and political work behind her, as well as decades of writing. I first discovered her in medical school, when I read her early book Witches, Midwives, and Nurses: A History of Women Healers (1973). From it I learned that my small group of nine women in the otherwise male class of ’77 belonged to a long, if forgotten, tradition. I also learned that social progress is not always an upward-trending line. The author of more than a dozen books, Ehrenreich has a reputation for chronicling cultural shifts before others notice them. She delights in confronting entrenched assumptions, popular delusions, grandiose ambitions—and in teasing out their unexpected consequences.

Often she incorporates firsthand experience into her analysis. For her best-known book, Nickel and Dimed: On (Not) Getting By in America (2001), she spent a year working at unskilled jobs. In Living With a Wild God (2014), she recounted her own spiritual epiphanies in adolescence and her struggle, as a determined atheist, to understand her “furious encounter with a living substance that was coming at me through all things at once.” Before all that, in 2000, she had been diagnosed with breast cancer and begun paying special attention to surprising new science about cancer, cells, and our immune system. Now 76, Ehrenreich explores that science in Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer. Once again, she is swept up by big questions. Not least among them is “whether the natural world is dead or in some sense alive” and behaving in unpredicted and unpredictable ways that have much to tell us about our approach to mortality.

She starts by looking at the many preventive medical procedures we are encouraged, even badgered, to undergo—those regular physical exams, colonoscopies, blood tests, mammograms. She had always pretty much done what doctors advised (she underwent chemotherapy), figuring that it made sense to treat disease before illness overwhelmed the body. But after watching many fitness-obsessed people die early, and realizing that she herself is now “old enough to die,” she questions that premise. Where is the evidence that all the effort at prevention saves lives or delays death?

It’s hard to find, she discovers. In people who have a strong family history of heart disease, treating high cholesterol does decrease mortality, on average. But for those who don’t have that predisposition, it doesn’t. Colonoscopies have not been proved more effective at reducing deaths from colon cancer than other, cheaper, less-invasive tests. Sometimes procedures cause more trouble than they prevent. Mammograms, for instance, detect tumors that might never be fatal, and can lead to over-treatment, which carries its own risks. The insight is counterintuitive—although finding diseases early on should prolong lives, the screenings we undergo don’t seem to lower mortality rates overall—and Ehrenreich decides that she will no longer get most preventive care.

She is just as clear-eyed about other approaches to delaying our decay—exercise, diet, meditation. Though she became a “fitness devotee” herself in middle age, she finds symptoms of cultural malaise rather than health benefits in the fitness and diet obsessions of the past 40 years. Wellness programs do little to reduce companies’ immediate health-care costs, and the pursuit of fitness, Ehrenreich argues, is often simply one more “class cue.” Workouts easily become just that—work, another demand for self-discipline, competition, and control. Ironically, when she reached her 70s, her knees began giving her trouble not from age-appropriate arthritis but from overexertion.

Turning from her critique of preventive medicine and fitness culture as death-postponement strategies, Ehrenreich is even more unsettled by research indicating that our immune system is not the magical “protective cloak” she learned about in graduate school. What really gets her rethinking her scientific beliefs is the evolving story of the macrophage—the specialized white blood cell that she always thought of as her good shepherd “through the valley of the shadow of death.”

Macrophages have traditionally been understood as one of our crucial first-line defenses against disease. They are found throughout our body—in our bones, brain, lymph nodes, lungs, and breasts—and circulate in our blood. They look like the amoebas we learned about in high school, those slippery, one-celled, independent creatures that move by stretching out and contracting, and eat by wrapping themselves around their prey, invaginating and absorbing it. The usual story went like this: Whenever macrophages find threats to our well-being in our midst—bacteria, viruses, fungi, or cancer cells—they kill them and eat them by engulfing and absorbing them. Ehrenreich assumed that keeping her immune system—and valiant macrophages—strong through exercise, diet, and positive thoughts was the key to not getting sick, not getting cancer, not getting old.

But research around the turn of the millennium suggested a different view. Macrophages do not always kill our cancer cells; sometimes they even help them grow and spread. They escort certain cancer cells through the tight walls of our blood vessels, and protect them as they circulate in our bloodstream, looking for a congenial new home. When such a site is found—in a bone or breast, liver or lung—macrophages then support those cancer cells as they mature into the metastases that will go on to kill us.

Scientists are now discovering that the macrophage is as much wolf as shepherd in other diseases as well. It may play a role in auto-immune disorders, and even in the usual afflictions of aging—heart attacks, strokes, arthritis. We thought we knew the causes of those (cholesterol, cigarettes, inactivity) and therefore the recourse (diet, abstinence, exercise); but now it appears that inflammation, caused in large part by our macrophages, may be a trigger. Ehrenreich ponders the heretical question: Can it be that instead of working to keep our immune system healthy, we should all along have been doing the opposite?

Ehrenreich is not, however, an apostle of unwellness, and Natural Causes is not a how-to book. Instead she focuses on the conceptual and “deep moral reverberations” of the discovery that our immune system can aid and abet a “cellular rebellion against the entire organism.” What if our convenient “holistic, utopian” view of the “mindbody” as a “well-ordered mechanism”—kept in harmony by positive thinking and solicitous tending—is wrong?

Ehrenreich proves a fascinating guide to the science suggesting that our cells, like the macrophages that sometimes destroy and sometimes defend, can act unpredictably and yet not randomly. It is almost as if our cells can choose when and how to behave—unregulated by any deterministic mechanism. But that would mean they have “agency, or the ability to initiate an action,” as she puts it. And what would that imply? If macrophages are actually deciding which cancer cells to destroy or to preserve, “maybe, crazy as it sounds, they are not following any kind of ‘instructions,’ but doing what they feel like doing.”Researchers are now finding this same agency everywhere, Ehrenreich reports—in fruit flies; in viruses; in atoms, electrons, and photons. Such discoveries must mean that agency, the capacity for making decisions—electrons jumping up a quantum level or not, photons passing through this hole in a screen rather than another—is not the rare, and human, prerogative we once thought.

Ehrenreich detects a paradigm shift in the making, away from holism and toward “a biology based on conflict within the body and carried on by the body’s own cells as they compete for space and food and oxygen.” This vision of the body as an embattled “confederation of parts”—the opposite of a coherent whole, subject to command and control—is “dystopian,” she writes. And yet it has liberating, humbling implications. “If there is a lesson here,” she proposes, it’s that “we are not the sole authors of our destinies or of anything else.” Of course, the struggle to win the battles within our body may be one we’ll never be able to resist. Who knows? Perhaps we’ll devise high-tech ways to induce, or persuade, our traitorous immune cells to cooperate with our health. But whatever technological miracles appear in our future, Ehrenreich hopes we can come to accept that the ultimate outcome will be, as it has always been, out of our control.

Researchers are now finding this same agency everywhere, Ehrenreich reports—in fruit flies; in viruses; in atoms, electrons, and photons. Such discoveries must mean that agency, the capacity for making decisions—electrons jumping up a quantum level or not, photons passing through this hole in a screen rather than another—is not the rare, and human, prerogative we once thought.

Ehrenreich detects a paradigm shift in the making, away from holism and toward “a biology based on conflict within the body and carried on by the body’s own cells as they compete for space and food and oxygen.” This vision of the body as an embattled “confederation of parts”—the opposite of a coherent whole, subject to command and control—is “dystopian,” she writes. And yet it has liberating, humbling implications. “If there is a lesson here,” she proposes, it’s that “we are not the sole authors of our destinies or of anything else.” Of course, the struggle to win the battles within our body may be one we’ll never be able to resist. Who knows? Perhaps we’ll devise high-tech ways to induce, or persuade, our traitorous immune cells to cooperate with our health. But whatever technological miracles appear in our future, Ehrenreich hopes we can come to accept that the ultimate outcome will be, as it has always been, out of our control.

No, because I’ve noticed, in my life as a doctor, that the truism is true: People die the way they’ve lived—even the demented and even, somehow, the brain-dead. The brave die bravely; the curious, with curiosity; the optimistic, optimistically. Those who are by nature accepters, accept; those who by nature fight for control die fighting for control, and Ehrenreich is a fighter.

Yes, because I’ve also noticed that everyone I’ve seen die does come to accept the inevitable loss of control at his or her finally unevadable death. Usually that happens over weeks or months, sometimes over years; occasionally it happens over days, hours, or even minutes. This acceptance is perhaps as developmentally determined as childhood, adolescence, adulthood, and old age. At the end, something magical appears to occur—something beautiful, something Other—that seems to heal the spirit, allay all fear, and settle, finally, the struggle for control.

Complete Article HERE!

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04/17/18

What a dying old woman taught me about love

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Was this a cause and effect of true love?

I was a newly trained hospice volunteer, and E. was to be my first patient. I had to work up the nerve to cross the threshold.

After gently clearing my throat and shuffling my feet in an attempt to wake her, I bent low to look at her face. Suddenly, her eyes opened wide.

She was as startled as me and said, in a forced whisper, “Who are you?”

“I’ve come to visit for a while,” I replied.

“Why, are you being punished?” she deadpanned.

I laughed a little, mostly with relief. I introduced myself to the dying woman who was a few decades my senior and then nervously began a monologue, telling her all about me. She listened attentively for a while but soon closed her eyes. On a tray table was a wedding photo. I peered at the circa 1940s picture and was taken aback. “Wow!” I said out loud. In her youth, E. had been stunningly beautiful. Bright eyes, fresh face. I looked up and saw her once clear but now milky eyes examining my face, watching my reaction to the photo.

She was bedridden, her bones fragile. During our next visit, I asked the nurse if E. could go outside in a wheelchair. The nurse said it was up to E. We rolled out into the sunlight and fresh air, and that’s when everything began to move faster for us, literally and figuratively.

I maneuvered her down the cracked and bumpy sidewalk into a nearby neighborhood. She lifted her face to the sun and opened her mouth to its warmth. She stayed that way until I parked the chair under a shade tree. I sat down with the trunk as my backrest.

For the longest time, she simply stared at me. Until she slowly stretched out her arms and beckoned me to her. I jumped up, although she didn’t seem in distress. I leaned toward her and she gently cupped my face with her hands. I could feel the pressure of each finger on my face. Suddenly, with purpose, she pulled me close and kissed me. On the lips, with a dry pucker.

I was not made uncomfortable by the gesture. Quite the opposite. I sensed in her a genuine joy and appreciation. So she kissed me. Perhaps the most meaningful kiss of my life.

Those meetings under the tree became our routine, where we shared stories of our lives. We quickly bonded through unabashed, intimate conversations. I told her things about myself that I had never, nor would ever share with anyone else. We simply started talking to each other that way. Instant trust, instant karma. Instant honesty.

E. told me she wasn’t so much afraid of dying as she was of going to hell. She had married young, to a very ambitious man, and as the years progressed, his business flourished, but their marriage did not. He increasingly spent more and more time at the office, with colleagues and away from her. Estrangement set in.

She found a job as a secretary and over time fell prey to the attentions and intentions of her boss — afternoon “lunches” at a motel.

One day, on the ride back to the office, her boss spotted his wife in town, waiting to cross a street. With a violent shove, he sent E. into the passenger side footwell, hissing at her to stay down until he was sure he had avoided detection.

It was a humiliating and illuminating moment for E. She ended the affair. But the deed had been done. She was officially an adulterer. Worse, a mortal sinner. And now, as her life was about to end, she could not shake the guilt and dread that God was about to deliver her to the eternal fires of damnation.

She wept as I knelt beside her chair and held her.

I know something about the Catholic church, having been an altar boy. I reminded her about the convenience of confession. “From what I just saw, I’ll assume you are truly remorseful.” “Yes of course,” she said. “And you have formally confessed this, yes?” “Once a month for the past 66 years,” she said. “Well, then, I think God has gotten the message … you’re off the hook!” “Do you think so?” she asked earnestly. “I know so,” I told her.

As our visits continued, I also shared stories I was not proud of, of my regrets, sins, character flaws, abuse of drugs and alcohol, tales of ruined relationships and marriages and career paths gone awry. How I blamed others and circumstances as if the bad things that happened in my life were not of the choices I made. She was at times scandalized by what she heard, but never judgmental. The process was cathartic, cleansing, transformative.

I felt a lightness of being I had never experienced before.

Within a year, she began to rapidly decline. During the day, I’d find her in a deep sleep. The nurses said she’d lay awake most nights and was eating very little. I started setting my alarm for 1:30 a.m. to make the 40-minute drive to her facility in the San Fernando Valley. I’d sit on a folding chair and move in close, so our whispered conversations would not wake others.

She was comforted and calmed by my presence. She was grateful that I had re-arranged my visiting times. (I know because she told me so.) And she also told me that she loved me. Too weak now to even raise her hands to my face, I fulfilled the need for that contact by tenderly kissing her cheek and forehead often. I needed it too. Time was slipping away.

I soon realized her truth, raw honesty and tenderness had created in me a level of introspection and self-examination that had previously been inaccessible. Was this a cause and effect of true love? And I did grow to love her — for her courage, candor and kindness. She was well aware her days were numbered. But for all of her failing health issues, she never expressed bitterness. It was another lesson learned for me.

For the first time in almost two years after I started visiting with E., I was going to be away from her, to make good on a long-planned vacation in the Yucatán. I told her that I’d be gone only a week and during that time there would be a full moon. I suggested that since she was awake at night she should look up for the full moon, and I promised I would too, and maybe we’d do it at the same time. Corny, maybe, but she didn’t think so.

One night during the middle of my trip, I couldn’t sleep and walked outside to where a hammock was strung between two palm trees. I laid back and looked up at a crystal clear moon and said out loud, “See? I told you.”

Upon returning home, it took me a few days to get back into the groove of work and life. But before I could make my next visit, I got a call from the hospice volunteer coordinator. E. had died while I was away. Peacefully, in her sleep, at age 87.

I often think of E., of how a dying old woman helped me to access and express my true, honest feelings about life and love. Not only did I get to learn from my mistakes, but from hers, too. I was able to affect the quality of her life for a time, but not the direction. She did both for me.

In real ways, we set each other free.

Complete Article HERE!

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04/15/18

When do you know you’re old enough to die?

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Barbara Ehrenreich has some answers

Author and journalist Barbara Ehrenreich at her home in Alexandria, Virginia, on 2 March.

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With her latest book, Natural Causes, Barbara Ehrenreich notes that there’s an age at which death no longer requires much explanation

 
Four years ago, Barbara Ehrenreich, 76, reached the realisation that she was old enough to die. Not that the author, journalist and political activist was sick; she just didn’t want to spoil the time she had left undergoing myriad preventive medical tests or restricting her diet in pursuit of a longer life.

While she would seek help for an urgent health issue, she wouldn’t look for problems.

Now Ehrenreich felt free to enjoy herself. “I tend to worry that a lot of my friends who are my age don’t get to that point,” she tells the Guardian. “They’re frantically scrambling for new things that might prolong their lives.”

It is not a suicidal decision, she stresses. Ehrenreich has what she calls “a very keen bullshit detector” and she has done her research.

The results of this are detailed in her latest book, Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, published on 10 April.

Part polemic, part autobiographical, Ehrenreich – who holds a PhD in cellular immunology – casts a skeptical, sometimes witty, and scientifically rigorous eye over the beliefs we hold that we think will give us longevity.

She targets the medical examinations, screenings and tests we’re subjected to in older age as well as the multibillion-dollar “wellness” industry, the cult of mindfulness and food fads.

These all give us the illusion that we are in control of our bodies. But in the latter part of the book, Ehrenreich argues this is not so. For example, she details how our immune systems can turn on us, promoting rather than preventing the spread of cancer cells.

When Ehrenreich talks of being old enough to die, she does not mean that each of us has an expiration date. It’s more that there’s an age at which death no longer requires much explanation.

“That thought had been forming in my mind for some time,” she says. “I really have no hard evidence about when exactly one gets old enough to die, but I notice in obituaries if the person is over 70 there’s not a big mystery, there’s no investigation called for. It’s usually not called tragic because we do die at some age. I found that rather refreshing.”

In 2000, Ehrenreich was diagnosed with breast cancer (she wrote the critical, award-winning essay Welcome to Cancerland about the pink ribbon culture).

The experience of cancer treatment helped shape her thoughts on ageing, she says.

“Within this last decade, I realised I was not going to go through chemotherapy again. That’s like a year out of your life when you consider the recovery time and everything. I don’t have a year to spare.”

In Natural Causes, Ehrenreich writes about how you receive more calls to screenings and tests in the US – including mammograms, colonoscopies and bone density scans – as you get older. She claims most “fail the evidence-based test” and are at best unnecessary and worst harmful.

Ehrenreich would rather relax with family and friends or take a long walk than sit in a doctor’s waiting room. She lives near her daughter in Alexandria, Virginia, and likes to pick up her 13-year-old granddaughter from school and “hang out with her a while”.

Work is still a passion too. She fizzes with ideas for articles and books on subjects that call for her non-conformist take.

Once a prominent figure in the Democratic Socialists of America, she is also busy with the Economic Hardship Reporting Project she founded, which promotes journalism about inequality and poverty in the US, and gives opportunity to journalists who are struggling financially. (The Guardian often partners with the organisation.)

Ehrenreich, who is divorced, has talked to her children – Rosa, a law professor, and Ben, a journalist and novelist – about her realisation she is old enough to die, but “not in a grim way”. That wouldn’t be her style. While a sombre subject, she chats about it with a matter-of-fact humour.

“I just said: ‘This is bullshit. I’m not going to go through this and that and the other. I’m not going to spend my time, which is very precious, being screened and probed and subjected to various kinds of machine surveillance.’ I think they’re with me. I raised them right,” she laughs.

“The last time I had to get a new primary care doctor I told her straight out: ‘I will come to you if I have a problem, but do not go looking for problems.’”

She pauses: “I think I beat her into submission.”

Natural Causes is Ehrenreich’s 23rd book in 50 years. Much of her work is myth-busting, such as Bright-sided, which looks at the false promises of positive thinking; other work highlights her keen sense of social justice. For her best-selling 2001 book Nickel and Dimed, she went undercover for three months, working in cleaning, waitressing and retail jobs to experience the difficulties of life on a minimum wage.

A recent exchange with a friend summed up what Ehrenreich hoped to achieve with Natural Causes.

“I gave the book to a dear friend of mine a week ago. She’s 86 and she’s a very distinguished social scientist and has had a tremendous career. “She said: ‘I love this, Barbara, it’s making me happy.’ I felt ‘wow’. I want people to read it and relax. I see so many people my age – and this has been going on for a while – who are obsessed, for example, with their diets.

“I’m sorry, I’m not going out of this life without butter on my bread. I’ve had so much grief from people about butter. The most important thing is that food tastes good enough to eat it. I like a glass of wine or a bloody mary, too.”

Barbara Ehrenreich: ‘Cancer is a cellular rebellion.’

Yet despite her thoughts on the “wellness” industry with its expensive health clubs (fitness has become a middle-class signifier, she says) and corporate “wellness” programs (flabby employees are less likely to be promoted, she writes), Ehrenreich won’t be giving up the gym anytime soon. She works out most days because she enjoys cardio and weight training and “lots of stretching”, not because it might make her live longer.

“That is the one way in which I participated in the health craze that set in this country in the 70s,” she says. “I just discovered there was something missing in my life. I don’t understand the people who say, ‘I’m so relieved my workout is over, it was torture, but I did it.’ I’m not like that.”

In Natural Causes, Ehrenreich uses the latest biomedical research to challenge our assumption that we have agency over our bodies and minds. Microscopic cells called macrophages make their own “decisions”, and not always to our benefit – they can aid the growth of tumours and attack other cells, with life-threatening results.

“This was totally shocking to me,” she says. “My research in graduate school was on macrophages and they were heroes [responsible for removing cell corpses and trash – the “garbage collector” of the body]. About 10 years ago I read in Scientific American about the discovery that they enable tumour cells to metastasise. I felt like it was treason!”

She continues: “The really shocking thing is that they can do what they want to do. I kept coming across the phrase in the scientific literature ‘cellular decision-making’.”

This changed her whole sense of her body, she says.

“The old notion of the body was like communist dictatorship – every cell in it was obediently performing its function and in turn was getting nourished by the bloodstream and everything. But no, there are rebels – I mean, cancer is a cellular rebellion.”

Ehrenreich, an atheist, finds comfort in the idea that humans do not live alone in a lifeless universe where the natural world is devoid of agency (which she describes as the ability to initiate an action).

“When you think about some of these issues, like how a cell can make decisions, and a lot of other things I talk about in the book, like an electron deciding whether to go through this place in a grid or that place. When you see there’s agency even in the natural world. When you think about it all being sort of alive like that, it’s very different from dying if you think there’s nothing but your mind in the universe, or your mind and God’s mind.”

Death becomes less a terrifying leap into the abyss and more like an embrace of ongoing life, she believes.

“If you think of the whole thing as potentially thriving and jumping around and having agency at some level, it’s fine to die,” she adds reassuringly.

Complete Article HERE!

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04/14/18

I’m dying, and I’d like D.C.’s Death with Dignity Act to help

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People attend a House Oversight and Government Reform Committee business meeting at the Rayburn House Office Building in February 2017 for a discussion of D.C.’s Death with Dignity Act.

I am dying of ovarian cancer. I do not know how long I have to live. I have endured radical surgery, 65 chemotherapy treatments, countless trips to the emergency room and admissions to the hospital to extend my life. Now, my illness has developed resistance to treatments, and the last two drugs did not slow the growth of my tumors. I can die from a combination of chemotherapy and cancer or from just the cancer itself. I recently decided to cease treatment and pursue palliative care so I can minimize my suffering and maximize the quality of life that I have left with my wife, Stella, and our beloved dog, Adina.

I love my life, but now I need to plan for my death. I would like the option of medical aid in dying, which is authorized under D.C.’s Death with Dignity Act and that took effect in February 2017 for those terminally ill patients who meet strict requirements. The law allows mentally capable terminally ill adults with six months or less to live to get prescription medication they can decide to take if the suffering becomes unbearable, so they can die peacefully in their sleep, at home, surrounded by loved ones.

March 23 was a wonderful day for me and other terminally ill D.C. residents. President Trump signed an omnibus spending bill that did not include a House-passed provision to repeal the law or an administration proposal to thwart funding of its implementation.

Coincidentally, March 23 also was the 20th anniversary of the first prescription for medical aid in dying in the nation, under the Oregon Death With Dignity Act, the model for medical aid-in-dying laws in the District and five other states.

Before the federal spending bill was enacted, I lived in a state of uncertainty. I feared that opponents would be successful at invalidating the law. Fortunately, they were not. The law has been upheld, and the D.C. Department of Health issued rules last June to implement it, but health-care providers have not done the work necessary to allow patients such as me to use it. The threat that the law might be repealed made it unrealistic for doctors, health-care systems and pharmacists to invest the time to develop policies to participate in it. The D.C. Department of Health confirmed at its performance oversight hearing in February before the D.C. Council, at which I testified, that not one resident has obtained a prescription since the law that took effect more than a year ago.

Now, almost two months after the hearing, I still cannot find a physician who is willing to write a prescription for medical aid in dying. I and other terminally ill residents in the District need a compassionate doctor to come forward and embrace this option for dying.

I have been surprised at how many people, including physicians, do not know that medical aid in dying is now legally authorized in the District. Assumptions that congressional opponents would defeat the law brought its full implementation to a standstill.

Now that the immediate threat of the law’s repeal is over, I would like to encourage the D.C. Department of Health to work with health-care advocacy organizations such as Compassion & Choices, which helped implement the Oregon law, to launch an education campaign here and put the law into action. This collective effort would require working with D.C. doctors, health-care systems and pharmacists not only to explain the rules but also to consider any changes to ensure that the law does not discourage participation. Terminally ill patients need to know that medical aid in dying is an option.

It also took five months after the Oregon law went into effect for the first doctor to write a prescription. Once he did, others followed. Oregon now has an end-of-life care system that recognizes this compassionate option for dying.

More than a dozen safeguards in the D.C. law have been time-tested for a combined nearly 40 years in states that have authorized medical aid in dying without a single documented case of abuse or coercion. The D.C. rules are more complicated than those in other states, which might make it harder for terminally ill D.C. residents such as me to access this option to die peacefully in their sleep, at home, surrounded by loved ones. The result would be needless suffering.

It’s time we make compassion the priority of this law.

Complete Article HERE!

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04/10/18

There is more than one way to die with dignity

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By I

“Who are you here to see?”

On this day, I was at Mount Sinai Hospital, in the oncology ward. The receptionist I usually check in with wasn’t at her desk. I was being greeted by a volunteer. Dark hair, wide eyes and a smile like a child’s doll. High school co-op student, maybe?

I handed over my health card and told her my doctor’s name.

“I’m sorry, I don’t know who she is. What are you here for?”

Her smile widens.

“Because I’m a patient?” I retort.

I know I’m being rude. But it’s an oncology ward. What does she think I’m here for? To discuss the weather? The shortage of wheelchair-accessible parking spaces in the lot?

What I really want to say is, my doctor is a palliative-care specialist. I’m seeing her because I have cancer. I’m preparing for my death.

I don’t look like I have cancer, let alone the incurable kind. I have all my hair. My friends and husband assure me my colour is good. Dressed in my normal clothes and not the pajamas I currently favour, I look reasonably well – for a middle-aged woman who also has spinal muscular atrophy, a congenital neuromuscular condition.

I rely on a motorized wheelchair to get around and need personal support workers to assist me in all aspects of daily living. It’s been this way forever, but now I have colon cancer, and two external abdominal bags to collect various bodily fluids.

This, to put it mildly, complicates things.

My palliative-care doctor is a compassionate young woman who wouldn’t look out of place in a medical drama. She has been guiding me through my own recent hospital drama: I was readmitted to hospital a couple of weeks earlier, for yet another emergency.

I’ve been fighting off a major abdominal abscess for more than a year now. At one point, my abscess was so large, one of my doctors admitted surprise that I was upright. This is what initially led to my cancer diagnosis. A colon biopsy confirmed the cancer was malignant. In October, I was told my cancer was inoperable, despite 28 rounds of radiation.

At least it’s not metastatic. Localized, but nowhere else. For now, anyway. Plus, my surgeon tells me, I likely have years with this cancer. Not months or weeks, like some of his other patients.

The challenge now is the infection associated with the abscess. During this current crisis, antibiotics are working. What my surgeon can’t tell me is when the next infection will hit, or when antibiotics may fail.

Some patients reinfect every month, he tells me. I’ve done well, he adds. I tell him I couldn’t handle being hospitalized every month. He acknowledges I would need to evaluate my quality of life, if this became my reality. In that moment, my decision to seek palliative care early seems the smartest decision I’ve made in a while.

Like most Canadians, I had limited understanding of palliative care before I had cancer. To me, “palliative care” was synonymous with “you are about to die.”

That’s not the case. On my first palliative visit, the doctor explains the word is Latin for “to cloak.” She personally likes that, seeing her role as guide and protector to patients who are coping with the most difficult time of their lives.

I need her guidance. There is no clear path around how to deal with cancer while living with a disability. I’m used to being disabled. It’s my normal. My quality of life up to now has been exceptional, complete with a husband I adore, a sweet, sassy daughter and a brand-new career.

Like everyone else diagnosed with cancer, my life has suddenly imploded. I find myself in this new world, navigating how to continue while knowing the end is coming much sooner than I’d like.

That’s why I’ve sought out palliative care. My own research leads me to studies showing that having a palliative-care expert can help me prolong my quality of life through the management of symptoms, such as pain that I know will likely worsen over time. My family doctor concurs, telling me outright that I need this.

This new relationship has enabled me to talk about my greatest fears. After my conversation with my surgeon, I fear dying slowly of sepsis, waiting for my organs to fail. I’ve agreed to a Do Not Resuscitate order, which ensures I won’t be hooked up to machines in the ICU, prolonging The End.

During this particular admission to hospital and based on what my surgeon has said, my choices seem stark. Down the road, I could die slowly from an infection that will shut down my organs, or sign up for a medically assisted death.

Then, my palliative-care doctor arrives at my bedside. She points out I have bounced back from severe, acute episodes before. She also knows I don’t want an assisted death and takes the time to explain there are options available, such as palliative sedation, a process where I can have large doses of morphine to keep me comfortable. She firmly tells me I am not close to needing this. My goal needs to be focused on getting better and getting home, to my daughter.

As she explains this, I start to relax. She’s given me the window I need to live my life, as compromised as it now is. It is not the life I would have chosen, but it still has meaning. My task now is to figure out what that meaning is. And her task is to help me to define my priorities while maximizing the quality of my life with medical therapies and emotional support.

It’s an interesting time to be thinking of my life as a person who is both disabled and has cancer. Less than two years ago, the federal government enacted a new law enabling Canadians with incurable conditions, whose death is foreseeable and are suffering irremediably, to ask a doctor to end their lives.

It’s been called “dying in dignity,” but for me, that’s not the way I want to go, at the hands of a doctor, wielding a poisoned syringe.

I believe no one with a terminal illness should be forced to endure suffering – but, if there is one lesson for me in the past year, death is not the only way to alleviate suffering. Managing physical suffering feels like traveling a winding road. Some days, it feels never-ending; other days, manageable, almost like the life I had before. Some days are so bad, I’m convinced death really is the only relief, but I’m brought back to reality when I think of what I could miss out on.

My life is definitely smaller now. I doubt I will ever work full-time again. I barely leave my apartment. Thanks to my father’s financial generosity, my husband has been able to take unpaid leave from his work to be with me. The time we spend together is precious. Even in its ordinariness, it is meaningful.

I appreciate the world differently now. It is as though time has slowed for me to see the small details of life, whether it be the softness of my bed sheets or watching snow drift down through my apartment window.

I’m trying to live with dignity, as I always have, despite the very real medical indignities I have been subjected to.

Which is why it dismays me greatly there are continuing attempts to make it easier for people without terminal conditions to ask a doctor to end their life. It dismays me that a lobby organization calling itself Dying With Dignity is not actively lobbying for increased access to palliative and hospice care, or advocating for more community supports for people with disabilities to live as productively as possible. In other words, to live with dignity.

We are all going to die, but before we do, each one of us has a right to a good quality of life, even to the very end. Yet too many Canadians do not have adequate access to palliative and hospice care. The lobbying efforts of those to equalize this are rarely discussed in our media.

I’ve chosen my path, thanks to the help of empathetic doctors and my own advocacy. My hope now is that more Canadians have the right to do the same, without the implied suggestion there is only one real way to die with dignity.

Complete Article HERE!

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