02/19/18

We Need to Revolutionize End-of-Life Care — Here’s Why

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Because it’s time to start thinking about death differently.

By Laura Dorwart

When Victoria Chang’s mother was diagnosed with pulmonary fibrosis, she didn’t have a single person she felt she could turn to. Six years earlier, her father had a stroke that led to significant neurological changes, and now the young poet realized she alone would have to care for them both. None of her friends had sick or elderly parents, so she felt completely isolated.

What followed was a decade of navigating America’s imperfect end-of-life health care system, without much guidance from the doctors and specialists she so frequently encountered. When asked what she would have done differently over the course of the stressful years, Chang says, frankly, “Everything.”

“Everything was a learning curve, everything new,” she says, noting how she wished there had been more help for people like her. “Emotions were high, and we needed a case manager or a consultant or something. Hospice seemed to help, but in the end, there was only so much they could do.”

Chang’s experience caring for seriously ill loved ones is sadly not unique. Thanks to a combination of denial, a lack of know-how and flawed systems, most Americans don’t have the support they need when it comes to end-of-life care. According to a study by the California HealthCare Foundation:

Furthermore, a majority of those surveyed had not even communicated their end-of-life wishes to the loved one they would want making decisions on their behalf. That’s where Dr. Ira Byock, chief medical officer of the Institute for Human Caring at Providence St. Joseph Health, comes in. A renowned expert in palliative care and the author of The Four Things That Matter Most: A Book About Living and The Best Care Possible, Byock wants to reimagine health care as a more personal, approachable system. He wants to boost the person-to-person communication and eradicate denial — an approach he and his colleagues call Whole Person Care.

Dr. Byock

“[Whole Person Care] attends not just to your medical problems, but to your personal priorities, values and preferences,” explains Byock. “You’re someone with bodily needs but also have emotional, relational, social and spiritual parts of your life, all of which need to be attended to.”

This perspective may not seem all that radical, but it is clearly not the current practice. American medicine is good in that it’s a “problem-based system,” Byock says. “It is organized around your problem list on your chart. Everything we do, by design, responds to a problem on your list.” But life isn’t just a set of problems to be solved; patients have lives that extend well beyond the walls of hospitals and waiting rooms. Health care, in Byock’s opinion, should address this reality at all stages of life.

Perhaps most importantly, Whole Person Care includes patients’ families at every level of care. Byock emphasizes the significance of the familial role in a patient’s comfort, as well as the ripple effects of a single individual’s illness on loved ones and their network of relationships. “Whenever one person gets a serious diagnosis, everyone who loves that person shares in the illness. It’s a family and community issue.”

Chang, for one, can attest to the need for a system like Whole Person Care. “Looking back, I can’t remember the past decade because I was so busy helping everyone around me,” she says.

When asked what advice she would give to those caring for a family member or spouse dealing with a serious illness, Chang emphasizes the importance of self-care and finding community support in whatever form that might take. Remember that “it is OK to think about yourself and to take care of yourself,” she says. “Seek out groups to share with and to get emotional support. I only did this toward the end when I started reading about and writing to people on the pulmonary fibrosis foundation website. Those forums saved my life.” She also encourages folks in similar positions to consider their options, including daycare, homecare and facilities, and weigh the pros and cons of each.

Byock also encourages those faced with these situations to manage their own health: “People can experience wellbeing even in the midst of serious illness.”

Complete Article HERE!

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02/16/18

What is the Death Positive Movement?

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Some of us think of it often, others none at all. Sometimes we joke about it, other times fear it. No matter your approach or point of view, the fact remains: we will all inevitably die. It is literally the one thing we all have in common. And, on top of that, we will have to bear witness to the deaths of those around us. Yet, in spite of this irrefutable fact, Western culture doesn’t seem to be able to talk about the big “it.” Instead of allowing this commonality to bring us together, it often alienates us from each other. This is where the Death Positive movement comes in.

It is allude to in popular culture, through commercials, music, and other types of media. It is the subject of films and novels, and even television series. But even though we are in many ways surrounded by representations of death and grief, its presence and role in our own lives is something many feel afraid or uncomfortable speaking about. It is this internal and societal conundrum that many of us experience that is the focus of the “Death Positive” Movement.

The Death Positive (or Death Positivity) Movement is represented by the general (and growing) movement toward opening platforms for discussion about the inevitability of death and dying. The movement focuses on the importance of encouraging open discussions on the reality of both our own death, and the death of others. This includes the creation of platforms and spaces where such discussions can transpire in a comfortable, honest, open, and curious environment; where individuals may come together with different perspectives and exchange them with one another.

It also has a very practical goal of teaching us how to speak to others (i.e. our parents and partners) about their end-of-life wishes, as well as our own. The hope is that death will become de-mystified, and that as a result, society (and the individuals that comprise it) will be able to prepare for death and the grief that often follows. More importantly, discussing death and dying actually enables us to think about our own immediate lives. It encourages us to lead the life we want to live, and appreciate the little things.

You may be wondering where it is that these death positive discussions take place? How can you become involved? We’ll give you hint- it doesn’t happen in mortuaries or creepy church basements over skeletons and ouija boards. There are in fact a number of platforms- both online and in physical spaces- where death positive discussions take place on a regular basis.

One of the most widely and regularly practiced organized series of discussions on death and dying are known as Death Cafés, and occur all over the world. First established in 2004 by Swiss social anthropologist, Bernard Cretan, with the intention of breaking the taboo surrounding discussing death, they have since been held in cities all over the world. At a Death Café people will gather over coffee and treats to discuss death, dying, and experiences of grief.

Much of this discussion enables the participants to understand what is most important in their lives, allowing them to focus on these positive elements to live more fully and happily. They are often held in different locations throughout a given city, but always with the intention of creating comfortable spaces to discuss personal experiences and questions about death, dying, grief, and all that’s in between.

We highly recommend taking part in a Death Cafe in your area!

Complete Article HERE!

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02/12/18

Doulas provide compassionate end-of-life care at North Hawaii Hospice

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North Hawaii Hospice Volunteer Coordinator Bobbi Bryant developed an end-of-life doula program for volunteers earlier this year.

By Jan Wizinowich

Since 1986, North Hawaii Hospice has been providing end-of-life care and support for their local community members. The in-home care by their trained staff and volunteers has eased the journey out of life and given support to family and friends left behind.

Recently, through the efforts of Bobbi Bryant, the hospice’s volunteer coordinator, training has been offered to volunteers to become end-of-life doulas, returning to old wisdom and benefits that can be derived from it.

“Caring for the sick and dying before the Civil War happened in the home. It was just a continuation of women raising children. They cared for the elders at the end of their life,” Bryant said.

But with the rise of medical technology, the end-of-life stage was taken out of the hands of the family, and the knowledge and wisdom was lost.

“People were being brought to the hospital to die, and then they were embalmed so we weren’t really caring for people at the end of life. We lost our skills,” Bryant said.

The resurgence of end-of-life doulas are a reflection of the return of birth doulas beginning in the 1970s.

“Midwives to the dying have been around for a long time. It started as a result of the resurgence of birth doulas and midwives. The model transferred to how we can care for people at the end. There was a lack of education around the dying process and when people wanted to start caring for their loved ones, there was a lot fear. The conversation around death had come to a standstill,” Bryant reflected.

Recognizing the need for doula training, Bryant attended a conference on death and dying on Maui last April.

“When I came back, I spent the next several months creating a curriculum and trained 14 people including nurses, an ER doc and health aids,” she said.

The decision to enter hospice care can be difficult, but once made it can free the family and caregiver to focus on the patient.

“If you come for hospice support early, you can have so much support. There’s so much pain and suffering that isn’t necessary,” Bryant shared.

The North Hawaii Hospice team includes a lead, general and vigil doula. Initially, the lead doula meets with the family and the patient to provide information about all the ways they can assist them, and establishes a relationship of trust.

The doula’s role is to provide non-medical comfort and to be a facilitator; both subtle and profound. On a practical level, the doula does whatever needs to be done — offering companionship, running errands, assisting with household chores, providing healthful meals and helping with bathing and personal care.

“You just be there, be grounded and love them. You need a way to get trust from people. As soon as I get there, I get my hands on them. The medicine doesn’t always help. So when they’re in a lot of pain I’m running energy with that pain and helping them to move the pain through, and helping them to relax,” said Rose Riedesel, a hospice volunteer and healing body worker.

But a primary role for the doula is to sit, listen and be aware of what’s happening with the various aspects of the patient’s care in order to act as an information conduit between the medical care team and the patient.

“The doula is an adjunct to the professional people involved. They’ll find out some information that the care team needs to know and they’ll pass that on, or if the family needs some information the doula will pass that on to them,” Bryant said.

Emotional well-being is vital to ease the dying process. A big part of the doula’s role is to encourage the patient to “talk with people about their life and find places of deep meaning; a deep connection in life, the people who meant something to them in their life, the experiences, what their passions were and what their difficulties were. It allows the person to sink into this process of dying,” Bryant observed.

Another role for the doula is to notice any unresolved issues, which can cause anxiety and tension in the patient.

“They listen in the stories for anything that’s unresolved. Sometimes you’ll hear something about a family member who needs to be forgiven. We want that person to have as much relaxation as possible in the end,” Bryant said.

The lead doula also helps the patient and family with a vigil plan that includes the creation of a peaceful space, along with a team of doulas sitting in shifts when the active dying phase begins.

“They help create a beautiful space for the dying person to be in with things such as art, quilts, photos and a certain scent. They ask, ‘Would you like something read to you? Who do you want with you? Can somebody get into bed with you?’” Bryant said.

After the patient has passed, the doula assists the family in making arrangements, and follows up with them.

“The doula assesses how to help the family at that time and backs out. In a couple of days, they give the family a call and ask to come and talk about what happened, maybe a beautiful touch or an interaction before the person actually stopped speaking,” Bryant said.

Just as with the birth process, dying is a time of loving connection.

Complete Article HERE!

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02/11/18

Grieving My Boyfriend’s Death… with His Ex-Boyfriend

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Being gay can feel isolating. So can loss. Conquer both, together.

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It’s never easy meeting your boyfriend’s exes, but it’s even harder when it’s at your partner’s funeral. So it was that I first met Donal, the love of Simon’s life. Handsome and charming, eloquent in his grief, I hated him before I even gave myself the chance to know him. While we got on fine at the wake, I had every intention of that being the only time we ever spoke.

This was made a lot harder by my decision to run the London marathon in our Simon’s name. As soon as the torrent of sweaty finish line selfies hit Facebook, Donal knew exactly why I had just run 26.2 miles, even though I’d done everything in my power not to bring his attention to what I was doing. It was about my pain, not anyone else’s.

“I wish we could have been better friends,” Donal messaged me.

“Well, we’re not the ones who are dead yet mate,” I wrote back. “So let’s Skype?”

We agreed to talk a few days later. Donal was immediately the most charming man I’d ever met. He was pleasant, complimentary, truthful, funny, and open about the fact he had felt just as alienated at Simon’s funeral as I had.

“What do you miss most about him?” he asked.

“His eyes,” I said. Donal nodded and smiled.

“I miss that ass, frankly.”

He paused, and then told me that I was the only other person who truly understood how he felt about Simon. I felt the same way: to speak to the only other person who had slept next to Simon was, perhaps, the most liberating thing in the world. Like the first time you make a Sean Cody joke with a new gay friend and realize that, for once, you’re speaking to someone who gets your shorthand.

We were both incredibly similar people—and both equally unaware of the chemsex and meth epidemic in London before meeting Simon—and both of us were trying to respond to his loss proactively. I wrote a play, he was making a film. He was helping support people he met who were in recovery, and I’d just run across half of London for Stonewall.

As we sat there, talking about our experiences with the same man, he started to cry as he told me that he wished he’d fought more for Simon to move out with him and get help in California, where the community was a lot better than it was in London.

This was not the first time Donal had told me this. At the wake, I had seen this as the most selfish opinion in the world: Didn’t I have a right to have met Simon too? This time round, less salty than I was when recently bereaved, I told him to stop being a fucking hero. Neither of us could have saved him, and we’d be arrogant to think otherwise. He smiled and told me he understood exactly why Simon fell for me.

We pledged to speak more, and we do. When Donal was back in England recently, we even popped into the bar where Simon and me—and Donal and me—had first met. Donal introduced me to the manager behind the counter, a man who I had bought pints from many times, knowing that we both had the same loss in our hearts, but had never spoken to.

“You won’t believe it,” said Donal, “but David here ran the marathon for Simon.”

The manager turned to look at me. He shook my hand. All three of us were choked up.

“Well then you’re not paying for those drinks,” he said.

Fran Leibowitz said in “The Impact of AIDS on the Artistic Community” that the crisis killed off the greatest audience for art New York had ever seen. For me, it also seems to have decimated a generation of mentors. Not just because of the body count, of course, but because of ageism in the gay community, a lack of social spaces that aren’t for clubbing, and because I’m sure we, as a generation younger, can seem uncomfortably ignorant of the defining moments of the gay liberation movement in the 20th century. Before Donal I had met nobody who could say certainly that what I was experiencing was not entirely new, and could confidently tell me when what I was feeling was important or when I was being a fucking idiot.

And this is as true for bereavement as it is for homosexuality. Both can feel incredibly isolating: many experience it, but it’s almost like everyone is speaking a different language when they try and share their stories. What Donal and I give each other as Simon’s partners is also what I was desperately in need of as a gay man: A confidante. Much-needed perspective. And an understanding that we are all part of something tough and beautiful together. And, I hope, I will give somebody else that when I’m older.

Complete Article HERE!

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02/5/18

A Burial at Gethsemani

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Abbey of Gethsemani

By Gregory K. Hillis

It was a surprise to enter the Abbey of Gethsemani’s church and see a body lying on a bier. Br. Harold was dressed in a white cowl and his face bore no signs of being made up by a mortician. He did not look like he was sleeping. He looked like what he was: dead.

He was not alone. The community had kept vigil with Br. Harold all night, each monk taking turns at the bier, praying the psalms with him one last time, prayers he knew so well from decades of saying the Divine Office.

As the funeral Mass began, Br. Harold’s bier was carried directly in front of the altar. There was no casket and his face was not covered. He simply lay there, a monk among his brother monks, albeit a now silent and unmoving participant in the Eucharistic feast.

After the Mass, his bier was carried out the doors of the church to the cemetery, filled with hundreds of identical white crosses. Here are buried monks from more than 160 years of monastic life at the Abbey. Among them is Thomas Merton, known in the community as Fr. Louis, buried beside Dom James Fox, the abbot with whom he so often clashed.

Along with the monks and members of Br. Harold’s family, I processed to a freshly dug grave. Although I’ve come to know quite a few of the monks of the abbey, I didn’t know Br. Harold. He was already in the infirmary with Alzheimer’s when I moved to Kentucky. I learned, though, that I missed out on a beautiful and simple man who breathed God in deeply, particularly when looking at a flower in bloom.

To allow Br. Harold’s brother monks, family members, and friends to be near the graveside, I found a spot on an outlook near the church that stood above his final resting place. Cistercians dig their graves very deep and they bury their dead without caskets. From my perch I could see that a pillow had been placed in the grave, on which had been placed a flower. There was also a ladder leading into the grave.

After graveside prayers, one of the monks descended the ladder while others lifted Br. Harold from the bier. The sheet he was on had six long straps attached by which he was lowered into the ground. As his brothers lowered Br. Harold down, the monk standing in the grave gingerly held Br. Harold’s head.

There was love and gentleness in the way the monk did this. I was reminded of the care with which my wife and I would put each of our newborn sons into the crib, doing all we could to make sure that his sleep wasn’t disturbed. When Br. Harold reached the bottom of the grave, I could see his brother monk almost tuck him in for his rest. He carefully laid Br. Harold’s head on the pillow, placed a white shroud over his face, and then ascended out of the grave, pulling up the ladder behind him.

From my vantage point I could see Br. Harold at the bottom of the grave, and then, shovel by shovel, being covered in dirt. Truth be told, it was disconcerting to see a human body—not a body in a casket, but simply a body—be buried. But never before had the words Christians recite on Ash Wednesday—remember you are dust—been as real to me as they were at that moment.

More importantly, I had never experienced death as something beautiful before this funeral. What I witnessed was the care and love of a community for one of their brothers, a care that extended to the very depths of the grave.

On Ash Wednesday we are reminded once again of our mortality; some of us need this reminder more than others. However, there’s something about my experience at Br. Harold’s funeral that leads me to contemplate my mortality not as something to be feared, but as an invitation to give more completely of myself to those in my community—to my wife, to my sons, to my students and colleagues, to those in my parish, and to those in my neighborhood and city.

Br. Harold lived a life of prayer and devotion in the context of a community, staking his own existence to the existences of others. In his life, he gave himself to his community. In his illness and death, the monks in the community gave themselves to him. At his funeral I learned that to confront our mortality is to come face to face with the reality of how deeply and truly we need one another. 

Complete Article HERE!

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02/4/18

His wife of 73 years was dying. A ‘death doula’ eased the way for her and his family

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Caretaker and end-of-life doula Lisa Jeansonne helps people who are dying stay in their homes rather than having to go to a hospital.

Jack Zito, 96, and Lisa Jeansonne, an end-of-life doula and caregiver, play Scrabble at Zito’s kitchen table on Jan. 24, 2018 in Sister Bay, Wis.

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John “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.

Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.

Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.

“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”

Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.

For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.

Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.

A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.

The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.

For decades their health was good and the couple relished visits from family and hosting barbecues with friends.

Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.

The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.

Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.

That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.

Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.

Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.

Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.

“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.

New movement to die at home

While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.

The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.

Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.

Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.

Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”

The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.

“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.

“People are awakening to the fact that there is a way to have a good death.”

About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.

Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.

“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”

A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.

“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.

In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.

End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.

Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”

Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.

“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.

Hatala also conducts online training classes for people throughout Wisconsin.

The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.

They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.

The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.

“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.

A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.

Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.

A way to a ‘good death’

For Zito, the care Jeansonne gave his wife made her “almost family.”

Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.

“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.

Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.

“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”

When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.

“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.

Learn more about the end-of-life doula program

To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com

Complete Article HERE!

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02/1/18

Death Brings Wisdom to Dying Patients

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By Mary Elizabeth Dallas

With terminal illness comes newfound, and profound, wisdom, researchers report.

They uncovered this silver lining of terminal illness as people in their final months tried to strike a balance between accepting their fate and making the most of the time they had left.

“The end of life presents a unique perspective,” explained senior study author Dr. Dilip Jeste, senior associate dean at the University of California, San Diego’s Center of Healthy Aging.

“This is an extremely challenging time, a confluence of learning to accept what’s happening while still striving to grow and change and live one’s remaining life as best one can,” Jeste said in a university news release. “It’s this paradox that, if embraced, can lead to even greater wisdom while confronting one’s own mortality.”

The study, funded in part by the U.S. National Institutes of Health and the American Cancer Society, involved 21 men and women between the ages of 58 and 97 who were in the final six months of their lives and receiving hospice care. About half of the patients were dying of cancer.

The researchers asked these people opened-ended questions about wisdom, such as “How do you define wisdom?” and “What experiences have influenced your level of wisdom?” The patients were also asked if their illness had altered their understanding of wisdom. Each of the interviews was recorded, enabling the researchers to analyze and interpret the responses.

The participants ranked traits associated with wisdom. The most important quality listed was having prosocial behaviors, followed by demonstrating social decision-making, emotional regulation, openness to new experiences, awareness of uncertainty, spirituality and self-reflection, as well as having a sense of humor and being tolerant.

The patients admitted that facing their own mortality and imminent death dramatically changed how they viewed wisdom. “My perspective, my outlook on life, my outlook on everything has changed,” said one of the patients. “It’s grown tremendously.”

One common experience among the terminally ill was their desire to find peace or acceptance as their health declined and they lost their ability to function normally.

According to study first author Lori Montross-Thomas, “It wasn’t passive ‘giving up,’ but rather an active coping process. They emphasized how much they appreciated life, taking time to reflect. There was a keen sense of fully enjoying the time they had left and, in doing so, finding the beauty in everyday life.”

Montross-Thomas is assistant adjunct professor in UCSD’s department of family medicine and public health.

One study participant said: “For all my life, being a Southerner and having been in beauty contests, I got up in the morning, put my full makeup on and did my hair every day. A lady was never in her nightgown unless she was giving birth! Now all that is very, very difficult for me… I’ve accepted it, and I’ve realized that I have to let it go… I try to take all this with as much graciousness as possible and I’ve realized that my friends really don’t care that I don’t have makeup on or I’m in my nightgown. They are just happy to see me out of bed sitting on a chair.”

The patients also found that living with a fatal disease stimulated growth, leading to more determination, gratitude and optimism. The researchers noted this path to increased wisdom ebbed and flowed as the patients struggled to find balance, peace and happiness at the end of their lives.

Many patients focused on looking for the positive instead of the negative. “I want them to remember me with a smile, laughing and giggling and doing some of the silly things we do,” one person said. “Why do you want to leave on a sad note? I do not want to be remembered being sad.”

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