04/24/18

End-of-Life Doulas: A New Type of Support and Care

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When Dorothy Henick’s father was diagnosed with lung cancer 10 years ago, Dorothy says she felt like “a lost puppy,” with “no clue how to handle the whole thing” or how she would manage his illness and eventual death. She confided her fears in her friend, Jeri Glatter. And last year, when it became clear that her father was nearing the end of his life, Dorothy asked Glatter, who had since been trained as an end-of-life doula, to support her family as they said goodbye.

Dorothy credits Glatter with giving her the courage to handle what lay ahead. “I told my father that I was going to take care of him and my mother and he could just rest. Jeri helped me be that person that I wanted to be.”

End-of-life doulas are part of a new and rapidly growing field, following in the footsteps of birth doulas—now a regular part of the conversation around birth. “Doula comes from the Greek meaning ‘one who serves,’” says Patty Burgess, founder of the doula training program Doing Death Differently. “Birth doulas are helping to usher new life into the world. End-of-life doulas are the bookends on the other side, providing non-medical, spiritual, and holistic support and comfort to family, significant others, and the person who is dying.”

That support can take many forms, including help with end-of-life planning and advance directives, educating family members about what happens during the dying process so that it will be less scary, and sitting vigil in the final days. Some also help families with funeral planning and bereavement support.

Like birth, death was once a family affair attended to at home. With advances in modern medicine, now it mostly happens in a clinical setting and few of us are faced with death until we experience the loss of a loved one. So we don’t know what to expect or how to act, and the whole process can be very frightening and alienating. Doulas work to bring the home, family, and connection back to death. “We facilitate a transformation of the experience of death and dying,” says Burgess. “The idea is to take this precious time and move from sadness, fear, and being overwhelmed to connection, meaning, and sometimes even joy.”

Who are end-of-life doulas?

Doulas come from many different backgrounds. Some are trained psychologists, social workers, registered nurses, or former hospice workers. But, according to Glatter and Burgess, what they often have in common is having had a transformational personal experience with death that led them to want to support others through the experience.

Though there is no national certification or universal training for end-of-life doulas, there are some 10 organizations around the country who offer training in the vocation. (See the section titled “How to Find An End-of-Life Doula” below for more about those organizations.)

What does an end-of-life doula do?

No matter what specific training they undergo, end-of-life doulas strive to offer critical support to those who are dying and those who love them, which can include:

Finding out what everyone needs

Doulas usually begin by meeting with loved ones as well as the dying person to find out what their needs and wishes are for the final days, weeks, or months, and to learn exactly what kind of support would be helpful. Some families really need logistical help with advance planning and communicating with medical professionals. Others may be more focused on preparing for the end-of-life vigil. “We are building up trust, gathering information, and connecting with the dying person about life meaning, what they feel their purpose is, what they would like their last days to look like,” says Glatter.

Consistent support in a time-crunched system

Even within hospice settings, the staff is able to spend a limited amount of time with someone who is dying or their family, notes Burgess: “Hospice may be with them one or two hours a day, usually spent on toileting, changing, and bathing.”

Doulas, on the other hand, are focused on your entire family’s needs during a hospice, hospital, or home death. They can spend more hours with someone as they die, and, though they are not trained medical professionals and do not provide medical care, they can serve as a liaison with hospice or hospital staff to communicate the person’s needs and desires.  

Educating and lessening fear

“There are a lot of things that happen at the bedside while someone is actively dying that can be fear-provoking for someone who has not seen it before,” says Burgess. “A doula can explain what’s happening and why it’s happening and help family members understand what the dying process looks like so they are not so fearful.”

Henick found that Glatter’s guidance about what to expect made the process “much less scary,” and, in turn, Glatter says that doulas train family members how to be with their dying loved ones. “It’s almost as if the family become doulas as well,” says Glatter, who is also vice president of the International End of Life Doula Association. “It becomes this new community and together we go through the process.”

Comforting the dying

Doulas often have a range of methods that they can employ to help a person who is dying feel more comfortable and relaxed, including guided visualizations, massages, or energy work such as reiki. They can also remind caregivers that reading spiritual passages or poetry, holding a hand, or gentle reassurances can ease pain and provide comfort. And they can make sure the environment is what the person wants at the end of their life, from selecting music to adjusting lighting. If there are medical needs that affect the person’s comfort, doulas can help families understand them and help communicate their wishes to the medical staff.

Navigating family wishes and dynamics

When Henick’s father was dying, she says her mother had a difficult time accepting that reality and wanted to pursue treatments that would no longer be effective. She was grateful that Glatter could listen to and address her mother’s concerns.

“Jeri was like, ‘OK, we have two railroad tracks. One is what you’re hoping for and one is the reality and probability, let’s ride them together,’” says Henick, who appreciated that Glatter could calmly and objectively listen to her mother when other family members objected to her suggestions. “She made her emotions OK.” With Glatter’s help, Henick says her mother was able to come to a place of acceptance that it was time to say goodbye to her husband. “She was grounding for my mother,” says Henick. “Sometimes you need immediate family, and sometimes you need another voice. It can’t always be your son or daughter.”

And of course, given the high stakes and overwhelming emotions that everyone feels as they watch a loved one die, conflict resolution is also part of the doula job description. “Let’s say you’ve got a patient who is dying and maybe they are spiritual but not religious. But they have family members who are very religious and they have concerns about the state of their loved one’s soul,” says Burgess. “Or maybe siblings haven’t talked to each other in a long time and now Mom or Dad is dying and they are not in the same place.”

In those situations, “A doula’s job is not to take sides,” says Burgess, but to figure out what the family needs to manage those differences. “Sometimes it’s just a matter of keeping a family squabble quiet and two rooms away. Sometimes it’s sitting down with the family because people need to be heard.” And sometimes doulas provide logistical support in these situations, coordinating visit schedules so that feuding family members stay apart.

Offering ritual or spiritual support

“There are so many rituals that existed in our culture but have been abandoned and forgotten,” says Burgess, “like creating a shroud, having a home funeral or a wake.” For those interested in having spiritual or ritual elements be part of the final days, doulas can help make that happen or connect families with other professionals who can help.

Making death about the meaning of life

“Dying is a part of life,” says Henick. “Making it a good death is important.” For Henick that came from the work Glatter did to make sure her father understood his legacy. “She spoke with him about what a beautiful family he has, that he made this family, and he loved and nurtured this family, and to be really proud of it. He just listened, and it all went in.”

Glatter also encouraged Henick and her family members to share their gratitude and other emotions with their father. “Jeri made it as peaceful and loving as possible, we were there telling him the important things—how much we loved him. He told us he loved us and told me to find fulfillment in my life. Just by being there and inviting these kinds of conversations Jeri helped us have the closure that we wanted. It made it so we can exhale and not regret the way it went.”

Glatter also helps families create a visual legacy such as a scrapbook, a life chronology on a scroll, family recipe books, collected poems and prayers in a decorative box, or audio or visual recordings of memories and wishes.  

Sitting vigil

INELDA-trained doulas create a plan for the vigil at the very end of a person’s life based on what the dying person wants his or her final days to look like. “We know what the room will look like, who will be present, what rituals may or may not take place, what the music or sounds will be, the smells,” says Glatter. “One of the richest parts of our work is delivering to them what they have envisioned as their version of a good death.”

For Henrick, Glatter’s work enabled just that. “I’m forever grateful to Jeri for making it as smooth a transition as possible. Something she told me will stick with me forever: ‘We labor into this world and we labor out of it.’ It was a labor, and she helped us every step of the way.”

How much does an end-of-life doula cost?

Some doulas work voluntarily, but there is a movement to professionalize the industry, and most charge fees either hourly or by service package, depending on the type of support you need. Fees can range from $40 to $100 an hour and service packages from $1000 to 4500 depending on the duration and nature of the work. Currently, there is no insurance coverage for end-of-life doula services.

How to find an end-of-life doula

There are several online directories of organizations who can connect you with individuals who have completed their training. Places to start:

Doing Death Differently

End of Life Practitioners’ Collective

International End of Life Doula Association

National End-of-Life Doula Alliance

Questions to ask a potential doula

  • What is your experience with death? What drew you to this work?
  • How long have you been doing it?
  • Have you completed a training with an end-of-life doula organization and do you have a certificate from that organization? (Visit that organization’s website to learn what the training includes.)
  • What kinds of services do you provide?
  • What community resources can you help me with?
  • Do you work with local providers such as hospices, nursing facilities, home health agencies, or companion care organizations?
  • What is your availability?
  • Do you work individually or with a group of doulas? (This could be important if you want someone to sit with you or your loved one round the clock.)
  • Can you provide references from other families and/or agencies?
  • How do your fees work? Ask about hourly or package rates.
  • Do I sign a contract, or is this a handshake arrangement?

Glatter suggests speaking with more than one doula, if that is possible, before making your decision.

If you find a doula whose approach interests you, but he or she is not local to your community, there is sometimes the possibility of working over Skype or by telephone.

Complete Article HERE!

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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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04/18/18

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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04/15/18

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.

By

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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04/7/18

The ‘Outside Lands of Death’ is coming to SF

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In just a few weeks, almost every corner of San Francisco will have death at its heel. The topic both universally experienced — and stigmatized — will be up for discussion in a variety of forms around the city.

A worker changes the Great American Music Hall’s marquee before You’re Alive, an event staged by You’re Going to Die, on Friday, Aug. 11, 2017, in San Francisco.

Reimagine, a nonprofit sprouted from IDEO, is putting on the Bay Area’s first so-called “death event series.” More than 100 events, each hosted by an individual organizer, will be offered to the public beginning on April 16 up until April 22. The nonprofit expects 7,000 people who are still alive to attend.

The events will cover all the ways death alters our lives — from the pragmatic (working with physicians to get Advanced Directives straightened out) to the artistic (drinking from ceramic cups made using the ashes of 200 anonymous people) to the literary (the science around the use of psychedelics and death with Dr. Richard Miller).

There will be highly-mortal film screenings (including a talk with Lee Unkrich, director of “Coco”), comedy shows (Mortified: Let’s Talk about Death, Baby), and psychodrama taken to the next level (Dead for a Day: Attend your own funeral to “altar” your life). Actress Francis McDormand will also be at the Castro Theater on April 19. for a “Theatrical Exploration of Death, Dying and Suffering.”

Aside from the arts, the events will draw on the subjects of healthcare, design, and spirituality. Brad Wolfe, Executive Director and Founder of Reimagine, wanted the event series programming to be valuable for — and reflective of — as many people as possible.

The death-positive movement — which is broad enough to contain anything from Caitlin Doughty’s Ask a Mortician YouTube series to amateur banjo sessions about the beautiful uncertainty of our mortality — has valiantly taken on the challenge of eliminating a major stigma. But in some cases, it has also been critiqued for being white-centered, and glamorizing a topic that has never, and will never, for many communities of color, feel whimsical.

That concern is exactly what Reimagine’s founders kept in mind, in the pursuit of designing an event series that would be inclusive of people outside death talk’s main demographic: middle-class white people who have the luxury of mortal musings. One such event will be hosted by Dr. Jessica Zitter, a Critical and Palliative Care Specialist at Oakland’s Highland Hospital in conversation with Pastor Corey Kennard at Glide Memorial Church.

The talk will explore the wealth of research behind racial inequities in healthcare at the end of life, and discuss the divide between dying African-American patients and a healthcare system that falls short of providing the right kind of support.

Zitter wrote an insider’s perspective on the problems with the way the dying are treated in our current medical culture in her 2016 book, “Extreme Measures: Finding a Better Path to the End of Life.” The book has been lauded by the likes of BJ Miller, a UCSF doctor and triple amputee and Lucy Kalanithi, a Stanford doctor and the widow of a Stanford doctor whose memoir on dying from cancer was released posthumously.

Her conversation with Kennard will also touch on her anecdotal experience with an aspect of healthcare that’s untaught in the medical world: finding a common language with patients who are dying that’s beyond the withdrawn and overly sterile protocol.

In her practice, she said, she underestimated the role that things like prayer, miracles, and hope mean to her African-American patients, who, “come into a hospital in their darkest hours and are met with language and concepts that feel like in a way that they’re robbing of their humanity, robbing of their opportunities for being whole.”

It was only through the years she’d been working with Betty Clark, an African-American chaplain, that she began to notice the vital components of healthcare support for her patients of color that she’d overlooked.

“There are many, many areas I had wished to delegate to others that I felt were not part of my job that are absolutely part of my job.” Zitter said.”But I really have to say that it’s really powerful to [pray with my patients]. It’s not necessarily about God, but it’s about connecting to them, and supporting them.”

The second in her series of discussion with Kennard will take place at the Oakland Museum of California on April 17., and cover the intersections of faith and medicine at the end of life.

A full event schedule is available on Reimagine’s website. Some highlights are in the slideshow above.

Complete Article HERE!

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04/6/18

How complementary therapies can positively impact end-of-life care

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By Mary K. Spengler

One of the most common misconceptions about end-of-life care is that the focus is solely on pain management. While that is a key component of any hospice care program, many providers, including Hospice of Westchester, recognize the importance of a holistic approach to treating the patient, not just their symptoms. It is a proven fact that patients diagnosed with a life-limiting illness greatly benefit from alternative therapies, in addition to medical treatment.

Often called complementary care, these therapies can maximize patients’ comfort and peace of mind and provide relief for their primary caregivers.

Caring for the “whole” patient is an essential feature of hospice. Mind-body complementary therapies such as massage, reflexology, music therapy, art therapy and pet therapy can help ease tension, reduce anxiety levels and improve the overall comfort of the patient.

A good hospice provider should arrange for these therapies to be provided in the patient’s residence, whether that be their home, a hospital or a skilled nursing facility. Together, the patient, their family and hospice team decide which therapy would best address symptoms of pain, stress and anxiety.

We are proud to offer all of the above therapies, at no cost to our patients, through The Anna & Louis H. Shereff Complementary Care Program. While they all can be useful depending on a patient’s needs, here is a closer look at how massage therapy and reflexology can positively benefit hospice patients and their families.

MASSAGE THERAPY
It is widely accepted that power of touch can have a healing impact on pain and decrease stress. Massage is a form of structured therapeutic touch, which can relax patients, relieve muscle tension, reduce anxiety levels and blood pressure, boost the immune system and moisturize the skin.

Licensed massage therapist Maria MacIlvane first recognized the positive effect of touch years before she started her massage career. When her mother was on hospice care, MacIlvane was awed that simply rubbing her mother’s shoulders would instantly bring upon relaxation.

“I continued to massage her every day. It was so beneficial and I could not believe that just touching someone compassionately could affect the process they were going through so deeply,” MacIlvane said.

After the death of her husband in 2007, MacIlvane needed a change and wanted to pursue a career she was truly passionate about. She became a licensed massage therapist in 2010 and expanded her therapies to hospice patients three years ago.

MacIlvane said there are many benefits of massage therapy on patients diagnosed with a life-limiting illness, including helping with muscle tension, circulation and anxiety. She also works with patients’ family members to teach them what they can do in between sessions to help their loved one, and even gives them tips for acupressure that can help with their own anxiety and stress.

“When patients know that someone is with them, holding their hand and providing a compassionate touch, the effects are amazing,” MacIlvane said.

REFLEXOLOGY
Reflexology is based on the belief that specific areas of the feet and hands correspond with specific parts of the body. Gentle stimulation of these areas with the thumbs and fingers relieves stress and tension, improves circulation, promotes normal body function and results in a feeling of deep relaxation.

Gabrielle Zale, a nationally certified reflexologist, began working with hospice patients shortly after starting her career 17 years ago. However, her knowledge of how touch could help those with an illness started many years earlier. She remembered how people pulled away from her own mother when she was sick, as if they were afraid to touch her.

“No one should feel that alone,” Zale said. “Ultimately, touch is the greatest healer, particularly at this final journey in life. Even though some patients may not be awake and alert, by touching them in this way you are acknowledging that they are still there and still part of the world.”

Zale said that, even if a patient can’t speak, she is able to sense small body changes that show the effects of her practice. “It’s a subtle energy shift. Their breathing slows down — you can tell they are relaxing and may be feeling less pain and anxiety. They can tell that you are acknowledging them and are really present with them,” she said.

“This work is a really sacred thing for me. I’m not just holding another person in my hands, I’m holding their soul in many ways.” 

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04/4/18

A Sunny Day at the Death Cafe

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What if talking about death didn’t have to be a downer?

By

Good morning on this pleasant Tuesday.

The last place you might think to spend a sparkling spring day is at a death cafe.

But that’s exactly what we did this month, and what we found, to our pleasant surprise, was anything but bleak.

On the second Tuesday of each month, the landmark Green-Wood Cemetery in Brooklyn hosts a “death cafe,” a salon-style gathering in which visitors can speak openly about death and mortality.

The death cafe movement, started in England in 2011, is now a global tradition taking place in coffee shops, offices and other unlikely spaces in dozens of countries. Its goal is to make conversations about dying — from the philosophical (is there an afterlife?) to the mundane (metal urn or marble?) — less taboo.

When we joined a recent death cafe at the cemetery, we expected an evening of tissues and tears with a group of New Yorkers in mourning.

The reality was quite the opposite.

We met a lively bunch of strangers, ranging from young adults to octogenarians, most of whom were not grieving at all; they had, instead, come for an intellectually stimulating, if at times uncomfortable, discussion.

“Death cafes are a kind of beautiful rehearsal for coming closer to death and understanding it and grappling with it, so that when we do have a death pending in our families, as is inevitable, we might be a little more prepared for it and slightly less rattled,” said the funeral director and death educator Amy Cunningham, who facilitated the get-together.

“There’s no agenda — nothing is sold or prompted — so it can go in all kinds of interesting directions in a totally natural way,” she said.

Between sugar cookies and laughs, our group jumped from religion to social media to psychotropic drugs to contemporary ethics.

“Can you be buried with your pet?” one woman, a documentary photographer, asked the group, following it up with a conversation on approaching death from a nonreligious perspective.

“How do you handle the loss of an estranged family member?” another wondered, prompting a third — who had lost a relative the week before — to speak about the death of her distant father.

She and her husband then debated the pros and cons of learning of a death through Facebook. Several minutes later, he told the group a separate story about the deathlike “static peace” he felt while tripping on the drug DMT.

(My contribution to the discussion: sharing how self-conscious I feel about what to say or do at funerals.)

“As frightening as it may seem,” Ms. Cunningham said that night, “there are many amazing things that can occur and ways to grow and carry grief through the next chapters of your life, and this is the way we evolve — through moments that seem so painful but then have hidden miracles of ecstasy.”

Green-Wood will host its next death cafe on April 10, and you can learn more through Death Café New York City or the Death Lab at Columbia University.

Complete Article HERE!

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