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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04/23/18

Dying with Dignity: A look at the life of a hospice nurse

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BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be 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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04/20/18

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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04/19/18

Back to the Earth with Green Burials

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The oldest traditions might be best for protecting our environment

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As individuals, communities and businesses continue to shift their priorities to become more ecologically responsible, some opportunities to protect the planet can come from unexpected practices. Green burials are gradually gaining traction as the most conscientious way to return oneself to the earth. This funeral process uses the least amount of unnecessary energy and resources compared to contemporary casket burials and cremation.

All steps in a green burial are optional, but key choices include: rejecting the use of added chemicals through embalming or cosmetizing the body, selecting a biodegradable casket made from unfinished wood or reinforced cardboard materials and foregoing the use of an outer burial container if permitted by the cemetery. There are a growing number of cemeteries that strictly serve individuals who opt for a certified green burial, but many cemeteries will accommodate requests to mix green burials with non-green burial plots. Cemeteries that exclusively serve green burials take additional steps to maintain the natural landscape.

Goodman-Bensman, a Jewish funeral home in Whitefish Bay that serves people of all faith, (4750 N Santa Monica Blvd.) has been offering green burial services for about a year under the official “green burial” name. Debra Watton, president of Goodman-Bensman explains: “Conceptually, we’ve always offered green burials, but not under the [green] name. In the Jewish faith, burial rites were very modest and natural.”

According to Watton, green burials are often included in the final wishes of the deceased. “It’s respectful and dignified, but it’s not what families are used to,” she says. Often the family fears they may not be doing enough to honor their loved one if the funeral is too simple, especially since green burials are more cost-effective than a conventional funeral. Goodman-Bensman recommends that like any final wishes, individuals officially document their desire to be remembered with a green burial, if they choose.

No one wants to plan a funeral after losing a loved one, especially if they aren’t sure how the deceased prefers to be remembered because no arrangements have been made. Watton has received feedback that planning green burials has given some families a sense of peace “because it became a natural process that eased the discomfort of an otherwise difficult topic.”

The usual practices of American funeral homes often date to the 19th century. Embalming wasn’t common until the Civil War as a way to preserve bodies of fallen soldiers in order to return them home for funerals. Now, because of refrigeration, the embalming isn’t necessary in order to make time for planning and having a ceremony. However, without embalming, the traditional wake cannot be factored into funeral planning. In these cases, families can choose to have a final private viewing before the funeral ceremony and burial.

Green burials are another way to make a minimal impact on the earth for the generations that follow. Above all, Watton urges that before someone dies, “People should talk about it. It’s OK to talk about it. It’s OK to talk about it in advance with loved ones and to ask questions before the time of need arises so that clear decisions can be made.”

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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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