End-of-Life Conversations Can Bring You and Loved Ones Closer

If the opportunity presents itself, honor the person by listening

By Lisa Fields

Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.

“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”

Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.

“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”

At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.

“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”

A New Dynamic

The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.

“These conversations are refreshing and calming to the souls of all who engage,” says Hattie Bryant, author of I’ll Have It My Way: Taking Control of End-of-Life Decisions. “If the dying person says words that the loved ones around are not used to hearing, it can open up a new and deeper path.”

Recognize the Moment

Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.

“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”

The Start of an End-of-Life Discussion

When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.

“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”

Staying on Topic

Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.

“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”

It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.

“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”

Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.

“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”

Complete Article HERE!

The Growing Acceptance of Medical Aid in Dying

More and more voters support options to allow the terminally ill to peacefully end their suffering. Politicians have little to fear from the issue.

By Kim Callinan  

While expanding and protecting health care was the number-one issue for voters on Nov. 6, what has gone unreported is that elected officials can now safely run on the issue of expanding and protecting end-of-life care options. For decades, lawmakers feared that sponsoring medical aid-in-dying bills that would allow terminally ill adults to have the option to peacefully end their suffering would harm their chances of getting re-elected. This year’s elections proved those concerns false.

Nearly all of the lead sponsors of bills in 28 states to authorize medical aid in dying in 2017 and 2018 who ran for re-election won (13 out of 14 state senators and 49 out of 53 state representatives). Voters also elected or re-elected at least five governors who publicly supported medical aid in dying: David Ige in Hawaii, Gavin Newsom in California, J.B. Pritzker in Illinois, Gretchen Whitmer in Michigan and Michelle Lujan Grisham in New Mexico. (Grisham’s opponent, Steve Peace, vehemently opposed medical aid in dying.)

In addition, Congressman Keith Rothfus of Pennsylvania, a sponsor of a failed resolution to overturn Washington, D.C.’s Death with Dignity Act and another House resolution condemning medical aid-in-dying laws nationwide that garnered only 13 co-sponsors, was defeated for re-election.

None of this should be particularly surprising. A majority of voters embraced this issue long before many elected officials and political candidates did — since 1996, according to Gallup’s annual polling; its 2017 poll shows that 73 percent of Americans support medical aid in dying, including 81 percent of Democrats and Democratic-leaning independents and 67 percent of Republicans and Republican-leading independents. In short, medical aid in dying is a rare bipartisan/nonpartisan issue. Five GOP legislators are among sponsors or co-sponsors of bills allowing medical aid in dying.

This unusually strong, wide-ranging support explains why 29-year-old Brittany Maynard, who moved from California to Oregon in 2014 to access its medical aid-in-dying law, was able to capture the attention of the American public. Three weeks after her YouTube video went viral, generating international news coverage, a YouGov poll showed that 38 percent of American adults — 93 million people — had heard her story.

Inspired, in part, by Maynard’s advocacy, since 2015 California, Colorado, the District of Columbia and Hawaii have enacted medical aid-in-dying laws. Today, D.C. and seven states accounting for nearly one out of five Americans have the option of medical aid in dying.

This movement is picking up major momentum, particularly among the millions of baby boomers who have watched their parents die in needless suffering because they did not have the option of medical aid in dying.

In addition, we know that these laws improve care by prompting conversations between doctors and patients about all end-of-life options, including hospice and palliative care. Oregon’s 1994 Death with Dignity Act has helped spur the state to lead the nation in hospice enrollment.

This helps explain why a 2016 Medscape survey of physicians showed doctors supporting medical aid in dying by nearly a 2-to-1 margin, 57 percent to 29 percent, up from 46 percent support in 2010. Just last month, the American Academy of Family Physicians dropped its opposition to medical aid in dying and adopted a position of “engaged neutrality,” noting that “family physicians are well-positioned to … engage in creating change in the best interest of [their] patients.” Medical societies in D.C. and nine states have adopted similar positions, and the New York State Academy of Family Physicians has endorsed allowing medical aid in dying.

Perhaps the most important benefit of medical aid in dying is that it is transforming end-of-life care in the same way childbirth care was transformed decades ago. As more states implement medical aid-in-dying laws, more and more patients have a voice in how they live the final chapter of their lives and how they die. Just as obstetricians and gynecologists now ask women for their input about who they want in the birthing room and whether they want to receive medication, doctors in states where medical aid in dying is authorized now are engaging in similar conversations with terminally ill patients.

In time, we will live in a world where health care providers fully inform their terminally ill patients about the benefits and burdens of all available forms of treatment and where deciding to end suffering and allow for a peaceful death will be a widely accepted medical option. The sooner we get there, the better.

Complete Article HERE!

At a Death Cafe, Tea and Couscous Make Mortality Easier to Swallow

Let’s talk about death, baby.

Attendees gather around a table to talk death at Tagine.

by Abbey Perreault

On a brisk November night, Tagine, a Moroccan restaurant tucked away on a quiet side street near Times Square, is alive with conversation. Nearly 20 people pack in around two tables cluttered with heaping, communal plates of steaming couscous, chickpeas, and yellow lentils. People exchange stories, laughs, and soft wedges of bread dipped in bright green chermoula. Multi-colored disco lights dance across the walls, and the swell of conversation rises and falls against a soft pulse of music and noise from the bar. A young, blonde woman walks through the door and surveys the crowd.

“Is this the singles’ event?” she asks, pointing to the tables. I shake my head.

“Nope,” I tell her. “This is the Death Cafe.” She thanks me, brow furrowed, and heads to the back of the restaurant.

While it may seem strange for conversations about death to be conflated with courting, our group could easily be mistaken for speed daters. Relatively young, open, and inquisitive, my dining companions exude a curious energy, solid appetite, and hunger for good conversation. But, unlike the majority of small talk with strangers, dialogue here is all about death—from philosophical musings about post-death life to the physiological components of dying.

“When the body is dying there are lots of … secretions,” says Tanya, a nurse who works in the intensive care unit at a local hospital. “We sometimes give patients medicine to try to dry them out and stop them from gurgling.”

“Is that what they call the death rattle?” someone asks from across the table.

Those noises, we learn, arise once the dying person can no longer swallow or clear fluid from the throat, and often indicates that they’re within a day of passing. But as disturbing as it may sound, the death rattle typically doesn’t cause the individual pain or discomfort. We talk about the sounds of death, and how to attempt to interpret them, sipping mint tea from delicate, warm glasses. “Having to take care of somebody who’s dying, and their family … it can be a lot. I want to talk about it with my husband, but I don’t want to fatigue him with it,” says Tanya. “But I think about it all the time.” It can be months, even years, she says, before she stops thinking about a patient who has passed away under her watch.

But not all Death Cafe diners come from professions that deal with death. According to Nancy Gershman, the facilitator of our cafe, attendees come from all walks of life, from college students with a philosophical curiosity about death to those who have witnessed something supernatural. Some people want to understand death better in order to prepare for their own. “I had this one 80-year-old who kept asking these roundabout questions,” recounts Gershman. “It turned out she wanted to know what dying was like.”

Hot tea helps the conversation flow.

Gershman, who has been facilitating this Death Cafe for the past three years, says there’s no agenda. Meetings often meander thematically, driven by the questions and stories people bring to the table. But she’s quick to remind me that, while the Death Cafe is a safe space to talk about loss, it’s not a support group. “When you lose someone, there’s a particular period right after it happens where you keep repeating, like a groove on a record,” she says. “We’re not here to stay stuck in that groove.”

Instead, Gershman says, it’s a place to speak openly and inquisitively about the end of life. Formally established in 2011, the original Death Cafe arose as the brainchild of the late founder, Jon Underwood, in his East London home. Inspired by Swiss sociologist Bernard Crettaz’s café mortel, he set out to create an intentional space dedicated to talking death in order help people “make the most of their (finite) lives.”

Strangers began gathering in Underwood’s London basement to sip tea, munch on cake, and casually discuss death and dying. Before dying unexpectedly from undiagnosed leukemia in 2017, Underwood and his mother created accessible guidelines and protocols so anyone could create Death Cafes within their own communities. Since then, more than 7,300 cafes have cropped up in over 60 countries—an indication that they address a deep-seated desire to understand death, one that’s been ignored, if not avoided.

After remaining relatively tight-lipped on the topic for centuries, those in the U.S. are more willingly peeking into the abyss—a cultural moment that’s been dubbed the “positive death movement.” From the growing demand for end of life doulas to the creation of apps that send daily reminders that you’re going to die, it’s apparent that more people are interested in confronting death.

“There’s a growing recognition that the way we’ve outsourced death to the medical profession and to funeral directors hasn’t done us any favors,” Underwood told the New York Times in 2013. By avoiding the topic until it happens, we’re left with all sorts of strange feelings about this universal life event. And yet, many of us prefer to keep it at a distance.
Part of this aversion, Gershman suggests, is that talking about it reminds us that it’s real. It shakes the comfortable illusions many of us cling to—that our bodies and brains are ours to control and keep. Sitting around the table, talking about how to financially plan for our funerals (to keep our partners and families from going into debt) can feel alien, even morbid, at first. But, through sips of mint tea, mouthfuls of warm lentils, and a few laughs, I’m reminded that it’s as necessary as making a financial plan before any big life event, such as going to college or getting married.

The strangeness of talking about death, Gershman says, goes beyond the mere fact that it’s been a longtime taboo topic in some cultures. There’s a lot of subject matter that’s taboo, she says, but death is different—largely because it’s inevitable. She compares it to the sex-positive movement in the U.S., where much of the silence surrounding sexuality has been stripped away to increase transparency and dismantle stigma. “People still have a choice when they’re talking about sex. You can either have sex zero times … or many times. But with death, you don’t have a choice. It’s going to happen, and it’s not going to be in your control.”

Nancy Gershman and a cafe attendee.

While making death less taboo will help us understand it and plan for it, it can’t help us prevent it. So planning for it is both frightening and necessary. But by ensuring tea and food are present, hosts of the cafes are able to make discussions of dying a little less scary. “There’s a superstition that if you talk about death, you invite it closer,” said Mr. Underwood. “But the consumption of food is a life-sustaining process. Cake normalizes things.”

My tablemates seem to agree that eating makes engaging with death easier. Tanya mentions that the pediatric unit has a giant bowl filled with candy, and it’s intended for the staff, not the patients. Digesting and processing death might be easier when accompanied by something sweet, something that nourishes us, something we understand to be routine. Like death, eating is something all living bodies simply have to do.

As the night progresses, one attendee whose husband passed away a few years ago tells me that, when she lost him, she lost her appetite, too. But in the past few years, her love for food, particularly dark chocolate, has returned forcefully. “Now, I eat it and I can’t stop,” she chuckles. She reaches into her purse, shuffling around a bit before pulling out three wrapped Hershey’s Dark Chocolate with Almonds nuggets, and hands one to each of us, smiling.

Laughter is common at the Death Cafe.

Even after years of facilitating Death Cafes, Gershman finds herself surprised by the feverish interest the cafes continue to garner. Month after month, newbies and returners come to talk death with strangers. A big part of the appeal, she ventures, is that death is great fodder for in-person conversation. “This is a subject that people can stay on, as opposed to babysitters and real estate,” says Gershman. “Death is such a rich topic that you could approach it in a million different ways and never be bored.”

Back at Tagine, conversation shifts from the life and death lessons learned from watching Golden Girls to the weirdness of grieving on social media. In a group of complete strangers, no one looks awkward or distracted, and no one is fiddling with a phone. “I really think that people are starved for interesting conversation at dinner,” laughs Gershman.

As I gulp down my piece of chocolate, another swell of laughter erupts from the table to my left. In comparison, the singles’ event in the back seems relatively lifeless. Gershman tells me that what I’ve seen and felt tonight is no anomaly.

“One of the waiters told me, ‘Whenever your group comes in, there’s always such great energy.’” she says. When she told him that this was a Death Cafe, a group focused on death and dying, he thought he had misheard her. “I think it’s because there’s a tremendous sense of relief. When you have relief, there’s more laughter.”

Complete Article HERE!

Griefcast: life-affirming conversations about death

Podcasts: Cariad Lloyd interviews celebs about losing a loved one. It’s far from a downer

Griefcast features interviews with such celebrities as Aisling Bea, Adam Buxton and Ana Matronic

By Sarah Griffin

A few weeks ago, I covered a podcast called Death in the Afternoon, hosted by funeral directors and experts in the business and cultural history of dying and bereavement. Griefcast, hosted by comic Cariad Lloyd, is a far more intimate examination of grief and loss. Lloyd interviews a person – usually a fellow comedian – about a person close to them who has died. She lost her father when she was 15, which is the central thesis of this podcast: it’s a project about normalising conversations around death. This year, it won in three major categories at the British Podcast Awards and it’s very clear why.

I had been tiptoeing around this podcast for a while, aware of Lloyd as a comedian and gifted improviser, but had been unsettled at the idea of listening to two people dig into a conversation about death in such a personal capacity. Podcasts are already a very intimate medium, and this kind of intimate conversation seemed a long way from the peripheral. However, I am so glad I took the leap – Griefcast has made its way swiftly into my top podcasts of the year. I haven’t been able to stop listening.

Philosophical

This doesn’t come from a voyeurism, necessarily, which may seem hard to believe given the fact that each episode is an hour-ish long interview about loss. Rather, there is something hugely philosophical about each conversation, some wisdom imparted about the horror – and mundanity – of death. Every subject handles it differently, and Lloyd conducts the interviews with huge grace. She is the other person in the conversation, for sure, and acts as a very powerful conduit for conversations that cannot be absolutely easy for the subject, no matter how much levity they conduct themselves with.

Cariad Lloyd: conducts the interviews with huge grace.

The episodes I started with were interviews with Aisling Bea, Adam Buxton and Ana Matronic, all of whom had lost their fathers. Buxton is serene and gentle in his discussions of losing his father – this interview was given only months after his passing. Ana Matronic is a powerful storyteller; her father died of Aids when she was 15, and her episode is a portrait of the late 1980s in America, but also about how stigma operates.

My recommendation as a starting point is Aisling Bea’s episode, which is raw and angry and extremely real. I was floored by the integrity and honesty Bea brought to the interview regarding her father’s death – and her admittance that some days she just didn’t want to talk about it, but she was going to talk about it anyway.

Fascinating

Not only are the stories that the interview subjects dispense important, but the manner in which they dispense them is fascinating too. I cannot stress, either, how none of the episodes I have listened to so far have been downers, or left me feeling distressed. Certainly they are emotional listens at times, but there is an ease to the atmosphere Lloyd creates and facilitates here – which in many regards is a deeply courageous thing to do, as a person who has suffered a loss. She offers hers simply and honestly at the beginning of every episode – her dad died when she was 15 – and sets the tone that this next hour is a place for big, big chats.

I wholly recommend this as a listen, whether or not you have experienced the death of someone close to you. It is one of those rare pieces that, without ego or self-congratulation, examines a vital component of the human condition.  

Complete Article HERE!

Death doulas can fill care gaps at the end of life

Palliative care nurses, social workers and people from the funeral industry are among those who work as death doulas.

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With continual advances in modern medicine, we’re enjoying longer lives. As the population ages, and particularly as many people are living longer with cancers and chronic diseases, end-of-life care is adapting and changing.

People who are approaching the end of their lives will usually spend some or most of their time at home, requiring care and support to do so. Family members might not always be available to provide this care. When they are, the process can be rewarding, but it can also be challenging and complex, often leading to a severe emotional burden for the carer.

Gaps in our health and social care systems are starting to be filled by death doulas. But beyond providing practical support, families are increasingly seeking the services of death doulas to help navigate the experience of dying. Those nearing the end of their lives, too, may bring in a death doula to ensure they can die the way they want to.

We urgently need a conversation about death doulas and new models of care at the end of life. We are continuing to build an evidence base through research with the death doula community and via consultation with the health services that interface with death doulas.

Defining the death doula

We’ve seen a similar concept in midwifery, where birth doulas have long been providing social, emotional and practical support to help women through the process of childbirth. This has been shown to have positive outcomes for mothers and their babies.

Like birth doulas, death doulas’ roles and functions are non-medical; these can include advocating, supporting (spiritually and sometimes physically), guiding, and providing emotional support to the person and their family, mainly in the home.

We undertook a systematic review of the literature to find available evidence about the death doula role. We found little formal academic literature describing the role, their training, or contribution to individuals, families and the health system.

But what we do know is that each death doula enacts the role differently. They might spend time with the dying person, offering emotional and spiritual support, and sometimes providing physical care. They might support the family carers in the work they are doing. Some death doulas are only present in the last days of life, offering “vigiling” – sitting with the dying person so they are not alone.

Some doulas offer after-death rituals such as helping families prepare the body or keeping the deceased at home.

A death doula can provide additional support to family members acting as caregivers at the end of life.

Some death doulas are paid by families who engage their services. Families have often found their chosen doula online or through word-of-mouth. Other death doulas work voluntarily, in a similar way to a hospice volunteer. But, because there are no formal structures or registers, we don’t know how many death doulas there are.

In Australia and elsewhere, palliative care nurses, social workers and those from the funeral industry work as death doulas. This seems to be a natural progression, but it’s a grey area: doulas are providing care, but are not registered or supervised.

There is little formal assessment to guide patient and family choice or to inform end-of-life care provided by professionals.

How can doula care be formalised?

Providing care in homes can be informal. It may be provided by families, friends, or community groups. Care can also be formally negotiated and provided by health services, aged care providers or private agencies.

It’s necessary to understand the implications of the death doula role. For example, they could become part of formal care arrangements such as home care packages or via private health insurance funding.

We also need to look at how these new roles are authorised to represent the dying person, as they are neither a family member nor a qualified health professional. It’s also important that they are appropriately trained and insured (if providing paid services).

There are personal, social and cost advantages in enabling care in the home for a dying person. For families, being able to support the person in a familiar environment can be a powerful motivator to engage a death doula to fill the gaps in care provision.

For the health system, care in the home is seen as positive. It can avoid unnecessary hospital use and help spread the costs of caring.

For the dying person who may prefer to die at home, it is a way of achieving this. Importantly, death doulas can improve the dying person’s ability to control their own care.

The death doula role may well incorporate some of the direct care provided by families and help them to navigate the complex needs and planning required at the end of life. If so, death doulas could represent an important opportunity to improve dying outcomes.

We need to ensure our community is informed, health service provision crosses both hospitals and homes, and that those providing care – regardless of setting – have skills and knowledge appropriate to their role.

Complete Article HERE!

At Death’s Door, Shedding Light On How To Live

By Judith Graham

Nothing so alters a person as learning you have a terminal illness.

Ronni Bennett, who writes a popular blog about aging, discovered that recently when she heard that cancer had metastasized to her lungs and her peritoneum (a membrane that lines the cavity of the abdomen).

There is no cure for your condition, Bennett was told by doctors, who estimated she might have six to eight months of good health before symptoms began to appear.

Right then and there, this 77-year-old resolved to start doing things differently — something many people might be inclined to do in a similar situation.

No more extended exercise routines every morning, a try-to-stay-healthy activity that Bennett had forced herself to adopt but disliked intensely.

No more watching her diet, which had allowed her to shed 40 pounds several years ago and keep the weight off, with considerable effort.

No more worrying about whether memory lapses were normal or an early sign of dementia — an irrelevant issue now.

No more pretending that the cliche “we’re all terminal” (since death awaits all of us) is especially insightful. This abstraction has nothing to do with the reality of knowing, in your gut, that your own death is imminent, Bennett realized.

“It colors everything,” she told me in a long and wide-ranging conversation recently. “I’ve always lived tentatively, but I’m not anymore because the worst has happened — I’ve been told I’m going to die.”

No more listening to medical advice from friends and acquaintances, however well-intentioned. Bennett has complete trust in her medical team at Oregon Health & Science University, which has treated her since diagnosing pancreatic cancer last year. She’s done with responding politely to people who think they know better, she said.

And no more worrying, even for a minute, what anyone thinks of her. As Bennett wrote in a recent blog post, “All kinds of things . . . fall away at just about the exact moment the doctor says, ‘There is no treatment.’ ”

Four or five times a day, a wave of crushing fear washes through her, Bennett told me. She breathes deeply and lets it pass. And no, psychotherapy isn’t something she wants to consider.

Instead, she’ll feel whatever it is she needs to feel — and learn from it. This is how she wants to approach death, Bennett said: alert, aware, lucid. “Dying is the last great adventure we have — the last bit of life — and I want to experience it as it happens,” she said.

Writing is, for Bennett, a necessity, the thing she wants to do more than anything during this last stage of her life. For decades, it’s been her way of understanding the world — and herself.

In a notebook, Bennett has been jotting down thoughts and feelings as they come to her. Some she already has shared in a series of blog posts about her illness. Some she’s saving for the future.

There are questions she hasn’t figured out how to answer yet.

“Can I still watch trashy TV shows?”

“How do I choose what books to read, given that my time is finite?

“What do I think about rationale suicide?” (Physician-assisted death is an option in Oregon, where Bennett lives.)

Along with her “I’m done with that” list, Bennett has a list of what she wants to embrace:

Ice cream and cheese, her favorite foods. Walks in the park near her home. Get-togethers with her public affairs discussion group. A romp with kittens or puppies licking her and making her laugh. A sense of normalcy, for as long as possible. “What I want is my life, very close to what it is,” she explained. And deep conversations with friends. “What has been most helpful and touched me most are the friends who are willing to let me talk about this,” she said.

On her blog, she has invited readers to “ask any questions at all” and made it clear she welcomes frank communication.

“I’m new to this — this dying thing — and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me.

Recently, a reader asked Bennett if she was angry about her cancer. No, Bennett answered. “Early on, I read about some cancer patients who get hung up on ‘why me?’ My response was ‘why not me?’ Most of my family died of cancer and, 40 percent of all Americans will have some form of cancer during their lives.”

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty about subjects that usually aren’t discussed in public.

“Because she’s writing about her own experiences in detail and telling people how she feels, people are opening up and relaying their experiences — things that maybe they’ve never said to anyone before,” Millie Garfield, 93, a devoted reader and friend of Bennett’s, told me in a phone conversation.

Garfield’s parents never talked about illness and death the way Bennett is doing. “I didn’t have this close communication with them, and they never opened up to me about all the things Ronni is talking about,” she said.

For the last year, Bennett and her former husband, Alex Bennett, have broadcast video conversations every few weeks over YouTube. (He lives across the country in New York City.) “What you’ve written will be valuable as a document of somebody’s life and how to leave it,” he told her recently as they talked about her condition with poignancy and laughter.

Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen.

During the past 15 years, Bennett chose to live her life out loud through her blog. For the moment, she’s as committed as ever to doing that.

“There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

Complete Article HERE!

Having fun while sharing your wishes is an appealing way to discuss end of life

The three sisters came to Lakeland Regional Health for what they thought would be a lecture.

Being retired educators, they’ve heard a lot of those.

Instead, they gathered in small groups to play a game with card-sized booklets and chips, laughing as they answered some questions asked and looking pensive as they thought about others.

“It gets to your emotions and thoughts,” said Janie Rambert, 61.

“You hear what other people have to say and it makes you think.”

Programs about advance directives, living wills and the like can come across as a thou-should-do-this talk.

Some may convey the benefits of those documents, but fall short at helping you start conversations about your wishes for medical care and support from family or friends if you become ill or incapacitated.

Colinette McGriff, 65, said she’d been holding back on having an advance directive or living will.

“I put it off because it seemed negative in a sense,” she said.

“The older I get, I think, ‘I should have done it years ago because I don’t want it on my kids.’”

Fewer than 4 in 10 people in the United States, about 37 percent, complete any kind of directives, concluded an analysis published in the July 2017 issue of Health Affairs.

How to make the numbers increase is a major goal of the Rev. Eileen Stone, a chaplain at Lakeland Regional; others involved in palliative care; and Lauren Springfield, manager of its community health program.

They invited members of Harmony Missionary Baptist and New Mt. Zion Missionary Baptist churches, along with community members, to the Hello Community Game Day held Sept. 29.

Middle sister Trudy Williams, 63, said she came hoping the program would “awaken me to my true feelings about how I actually feel.”

At the end, she and her siblings agreed, it helped achieve that.

“I’m going to discuss more with my husband and family about what I want to do and see how they feel about it,” Williams pledged.

They played “Hello,” a Common Practice conversation game. Participants write answers to questions and share their answers with others in their small groups.

Springfield and Stone called it “a game about living and dying and what matters most to each person.”

 

The teal-blue booklets in which they answered questions were for use with Project Talk, Conversations that Matter, a research program at Penn State Milton S. Hershey Medical Center.

The Hospice Foundation of America chose Lakeland Regional as one of 15 organizations to take part in research for a project the foundation is doing with Penn State Health.

People first wrote down any fears they may have had about playing the game and what they hoped to learn from it.

“I wanted to learn more about living wills and regular wills because we travel on the highway a lot,” Rambert said.

Then it was on to questions like what you would do if you knew you had three months to live, non-medical facts you would want a doctor to know about you; and who you would want to sing at your memorial service if you could choose anyone in the world.

Would you want your healthcare team to know your religious or spiritual beliefs?

Do you worry more about not getting enough care at the end of life or about getting too much?

What music do you want to be listening to on your last day alive?

Those were some of the questions in the booklets, which participants were able to take home.

There were no wrong answers. People could change their minds.

The chips given each person could be gifted to fellow participants for insightful, emotional and moving answers.

Not all questions got answered that day. The sisters, who taught in Polk County schools, said they plan to consider them further and talk about them with others.

Rambert, contacted Oct. 22, said she found her husband, Dwayne, more open to doing it than she was.

“You have to have someone there to keep you directed,” she said.

Springfield said she would like to help arrange other Hello game days at local religious institutions.

“People feel more comfortable coming to events at churches than they do at the hospital,” she said.

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