‘I Run a Death Cafe’

By Megan Mooney

I’ve been interested in death my entire life. I was going to be a mortician, and then I took a grief and loss class in college and switched degrees. I’m now a social worker. But I had always wanted to do something on a macro level to help my community around issues of death and dying.

In 2012, I was completing my social work practicum at a hospice and the team leader there wanted me to do some community involvement work. She told me she’d read an article about a “death cookie” group. I talked to my boss and she explained the correct name for the organization was Death Cafe and told me to get in touch with Lizzy Miles, who had started the cafes in the U.S. that year, after reading about them in the U.K.

It happened to be around the same time my uncle had died of cancer; he’d had a horrible death. So I really wanted to create a group where people could come and talk about death and educate each other. After I emailed Lizzy, she called me and we talked for hours.

She helped me get my first death cafe started in February 2013 at a coffee shop in town. The cafes were starting in LA, Atlanta and New York, but I’m in a small town called St. Joseph in Midwest Missouri, so there were none around my area at the time. At my first death cafe and for the five after, I had two women who would drive 7 hours each way to attend. That showed me how much people needed this safe place to talk about death and dying.

We have coffee and cake at each session and my first cake said “Missouri’s First Death Cafe” on it. I laugh about it now because I got so much cr*p for that cake. I went to a big grocery store and told the lady there that I wanted little headstones on the cake. She got mad and told me it was a family business. I had to explain to her what I actually needed the cake for.

But people still thought we were going there to “drink the Kool-Aid” and die. Before my first death cafe a local hairdresser said that an older woman had read a news article about it and was talking about how it was a morbid group getting together to do God knows what. A lot of people still think it’s a morbid group.

Every death cafe is different in terms of who attends and what the attendees talk about, but we all follow the same rules: It’s not a grief or counselling service, we are non-profit, the cafes are held in an accessible, respectful and confidential space and they have no intention of leading people to any conclusion, product or course of action. We also always offer drinks and nourishing cakes! Having food is very important. It is life sustaining and we believe it helps people to feel more open to talking about death.

There were about 20 people at my first death cafe and their ages ranged from 25 to 70. It’s for adults, so 18 and older but I’ll have people of all ages; the oldest attendee I’ve had was 85. But I’ve only ever had one person come who was terminally ill.

When I host, I have four or five people at each table and at the beginning I ask everyone to start with what brought them here to talk about death and dying. That seems to be the only thing I need to ask.

My dad and aunt came to my first death cafe. My father never talked about death and my aunt hadn’t been able to talk about my uncle’s recent death without crying, so I didn’t know how it would be. But as I was looking around, my dad was laughing with his group and my aunt was laughing with hers. I sat down and heard my aunt talking about my uncle’s death without crying for the first time.

The following week my dad called me and was talking about how you’re not supposed to make any big decisions within the first year of a loss. He then told me he’d learned that from the ladies at his table at the death cafe.

My dad came to every single death cafe I held after that, except one, and he planned his funeral and all his funeral songs. He died three years ago, but his death was easier for me because we’d had all these conversations about it. He talked all the time about how much the death cafe helped him face his own death.

Death cafes run all over the world
Megan Mooney has been running death cafes in St. Joseph, Missouri since 2013.

A theme that often comes up is relationships and death. People will talk about losses they have had and how it impacted them. Everybody has experienced a death in their life and most of them have never really talked about it. I had a lady who came in, she was probably in her late 50s and she was really shaky at the beginning. At the end she came and thanked me and said that she had never been able to talk about death with anybody before because in her family it was a “taboo”.

People also talk about what they want at the end of their life. There can be a superstition that talking about death brings it closer, so people avoid talking about it at all costs. But when you don’t plan for the end of your life it can be harmful to your loved ones, or add to their grief. My dad making plans helped me tremendously and it was cathartic for him too.

While there are sometimes tears, most death cafes are full of people laughing and having a good time. I believe that thinking and talking about death helps us to be our authentic selves. It helps us to take our mask off and not take things for granted. We’re often in such denial about death that we hurry through life and don’t appreciate the people in it. At these cafes, you get together with strangers and you’re talking about an intimate topic that most people can’t even talk about with their family. It brings you closer and helps improve your relationships with people.

At the end of each death cafe I ask attendees what their “Aha!” moment has been and I hand out surveys. One of the questions is: “Did your views on death change as a result of the death cafe?” It’s crazy because almost every time people answer something like: “My views on death didn’t change but my views on life have changed.”

When COVID first hit we decided the death cafes had to be online. But it ended up being a blessing in some ways because it meant we could meet with people in different countries all over the world at the same time. Now we’re back meeting in person, but we do have cafes online too.

Death cafes began in the U.K.
Megan Mooney first started running death cafes in 2013. She has now run 45 death cafes with hundreds of attendees.

I’ve run about 45 death cafes since 2013 and the smallest group I’ve ever had was still 10 people. I’ve also had companies ask me to host death cafes for their staff. I had one life insurance company with 1,500 staff and there was a woman there whose son had died by suicide. When I asked if anyone had any “aha!” moments, she stood up and shared how she felt about her colleagues’ reaction to her since she had returned to work.

Being involved with Death Café has taught me to love with my whole heart and that nothing in life is permanent. I’ve learned how to accept change, which can be hard. And, I’ve realized that relationships matter the most in life: my relationship with my daughter and spending time with her. That used to include my dad too, he was my best friend.

As a leader for Death Café, I have learned tremendous lessons from attendees and our followers on social media. I’ve learned that so many things in life are trivial. I don’t really get upset any more. Our views on death usually inform the way we live. When you start to come to terms with your own mortality, it can push you to really live your life and to be the best version of yourself. If you look at life from the vantage point of death you can see how beautiful it is.

Complete Article HERE!

What is a death doula?

How trained companions help people face their last days

Death doulas can arrange pre-funeral ceremonies with their clients, in a bid to relive happy memories and get some closure.

From organising living funerals to offering grief support, these specialists aim to create a ‘death-positive landscape’

By Lavina Dsouza

Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.

While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.

The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.

Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain

While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.

Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.

“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.

Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.

“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.

The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula

Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.

Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.

The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.

While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.

Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.

Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.

Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.

It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”

Complete Article HERE!

Why Death Doulas Can Be Especially Necessary for Folks in the LGBTQ+ Community

By Gabrielle Kassel

According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.

Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.

Death doula, defined

Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.

The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.

While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.

How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces

Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.

For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.

In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.

Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.

In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.

Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family

In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)

Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.

That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.

For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.

Why death doulas for the queer community need to be queer or queer-informed

Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.

As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”

It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.

To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.

Complete Article HERE!

When It Comes to End-of-Life, Some Are Taking Matters Into Their Own Hands

It’s called the VSED option — the refusal to eat or drink. The goal is to hasten death and it’s perfectly legal.

By Kevyn Burger

Some patients diagnosed with terminal illnesses or chronic progressive diseases find the prospect of a long decline, great suffering or significant deterioration to be intolerable.

For those with the desire to hasten their own death, one option is to refuse to swallow food or sip liquids. The practice, known as “voluntarily stopping eating and drinking,” or VSED, typically results in death within 10 days to two weeks.

“People have been dying this way since time began. It’s a natural way of dying, but people should know they can’t do this by themselves. They need to be attended by those who are knowledgeable about symptom management who can help them have the least bad death possible,” said Judith Schwarz, the clinical director of End of Life Choices New York.

A registered nurse with a Ph.D., Schwarz has written and lectured widely on the practice and advised hundreds of people who have chosen and followed through with the VSED option.

Now she has collaborated with a palliative care doctor, a bioethicist and a law professor specializing in end-of-life issues to co-edit a comprehensive, first-of-its-kind book on the subject.

First-of-Its Kind Book on VSED

Published this month by Oxford University Press, “Voluntarily Stopping Eating and Drinking, A Compassionate, Widely-Available Option for Hastening Death” takes a multi-disciplinary approach to explain both the practical complexities and ethical conundrums of the process to patients, their families and the medical clinicians who care for them.

“People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process.”

Hastening death via VSED is not an impulsive decision. Schwarz describes the people she advises about how to die this way as “well informed and determined,” embarking on the process after securing aid from experienced guides.

“They understand that they need family and caregiver support, twenty-four/seven care at the end from people who understand why they made this decision,” she said. “They need access to palliative or hospice oversight. Medications must be available to the patient to aggressively treat symptoms of pain.”

Co-author and palliative care physician Dr Timothy Quill, of Rochester, N.Y., finds that many of his patients who have pursued VSED shared a personality type.

What a VSED Patient Can Expect

“Of what I call the last-resort options, VSED is the mostly widely available and the least widely described,” he said. “People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process. They are on the sicker end of the spectrum and want an option to speed things up. They are prepared for the end of their life.”

The new book offers case studies that detail what a patient who chooses VSED can expect in the dying process

Book cover of, Voluntarily Stopping Eating and Drinking. Next Avenue, VSED, end of life

“At first they’re up and around and it’s a time for family to come together, for saying goodbye. They gradually get weaker, the world starts getting smaller and they become less responsive,” said Quill. “As they get dehydrated, their blood pressure drops and that causes organ failure.”

After the first day of no food or liquids, hunger tends to ease, but thirst becomes overwhelming. But even the use of ice chips or hourly sips can prolong the process. So, an oral care strategy that includes swishing and spitting, swabbing and using mists that don’t rehydrate the patient must be planned.

Schwarz notes that most VSED patients experience agitation, delirium and/or hallucinations in the 24 hours before death.

“Everyone has a period of this, and they need anti-anxiety meds and strong tranquilizers to medically manage symptoms so that the delirium is not intrusive, frightening or awful,” said Schwarz. “At this time, family can be present, holding the patient’s hand or playing the music they like. I say, ‘Don’t disturb them, as they are on their journey leaving this world.’ I can assure them that their loved one is not suffering. At the end, they stop breathing and their heart stops.”

Complete Article HERE!

Will Power

— Preparing for my death has provided me with way more entertainment than is seemly

Although confronting, the act of getting my affairs in order has provided much space for reflection – and gratitude

BY

It’s lockdown number whatever, and this time I’m going to make it count. No sourdough therapy, no binge watching Schitts Creek, no ordering recklessly expensive artisan cakelets. This time I’m preparing for death.

A few years ago I helped my mother write her advance care plan. Now it’s my turn. I download it and work my way through the personal details to the end-of-life section. Who do I want to make medical decisions on my behalf? When do I want the plug pulled? I surprise myself with the strength of my written response.

It corresponds to the fierceness with which I guard my mother’s humanity: from well-meaning nurses who try to infantilise her, from doctors who talk to me about her as if she’s not in the room. I ask them politely to address themselves to her. Witnessing this, powerlessness and the loss of a stake in discussions about my own welfare have become the things I fear the most. I’ve seen firsthand how easily control of our destiny can slip from our grasp.

Her diary, once a daily record of her reflections, has become a hit-and-miss affair as her memory fades. A well-meaning relative has taken to recording my mother’s activities as a means of jogging her memory. She’s having none of it. Her latest entry reads: “Please leave me to write in this diary. It is beginning to look as if it has no idea who I am.” Despite her loss of autonomy, she has retained her sense of humour.

The fear of powerlessness is not the only prompt for my end-of-life preparations. I’m driven in part by the wish to make my passing easier for my children, whom I confidently expect to be inconsolable at the loss of their mother. To this end, I begin the task of gathering and storing my will, enduring powers of attorney, property deeds, birth, marriage and divorce certificates and, most importantly, the passwords to all my accounts.

Dying is a serious business. If a heart attack doesn’t kill you, the paperwork will.

In the search for the whereabouts of my will, I come upon some correspondence that has me reassessing my offspring’s expected levels of postmortem devastation. Two years ago I sent them a short email advising them where to find my will, and the spreadsheet that lists their individual advances on what we laughingly call their “inheritance”.

“Child X has as yet no entries in her column,” I write. “That’s what a life of abstemiousness and no driving licence can do.” To which Child Y, the party-boy comedian, responds: “How do I get my hands on some cash now? The email dragged on a bit so I couldn’t finish it.”

Undeterred, I dust off my “official documents” file from the cabinet under the stairs and sort the useful from the outdated, the originals from the copies. I find a useful online resource to list my bank details, assets, liabilities and funeral instructions.

Calculating your net worth can be confronting when the entry you put next to the dollar sign in the car column is “Not much”. Worse, the column is actually titled “cars”. I have very few entries in the “assets” side – nothing under “boat” and no idea what “other toys” might mean – but even fewer under “liabilities”. Freedom from debt may well be the only legacy I leave my children. Having gone through a financial settlement a decade ago, I’m determined to live within my means. So far I’ve managed to do it.

I’m taken with the Japanese concept of yutori: what Robert Dessaix describes as “just enough – time, friends, love, books – and a little bit more”. It’s giving yourself enough time after you have arrived at a destination to look around you. For me, it’s about having a comfortable life without the need for those notional “other toys” and the financial burden that comes with them.

My funeral wishes are essentially limited to the desire to be cremated and have my ashes scattered in my family’s happy place – a small coastal town. The musical component of my funeral is much more significant than the logistics.

Five years ago, I compiled a musical wish list before an extended overseas trip and surprised each child with their own vinyl copy, complete with album notes. Absolute Lizzie – The Funeral Selection was a highlight of my parenting career. It was a snapshot of the life I shared with my children, full of meaning and memories for all of us. The playlist is a chaotic combination of soundtracks and sentiment; a shameless play for laughs as well as a heartfelt homage to those long-dead musical geniuses who added so much joy to my life.

Lost in a reverie, I’ve managed to pass a long lazy afternoon in lockdown surrounded by dog-eared papers and wrapped in a warm maternal fug. I highly recommend it.

Preparing for my death has provided me with way more entertainment than is seemly. And a few ideas for a follow up album: Absolute Lizzie – The Afterlife.

Complete Article HERE!

The Best Books to Help You Cope With Death and Dying

How the wisdom of Joan Didion, death doulas, and Big Bird have prepped me to dance into the void (and plan my estate).

by Mary Frances Knapp

The chillest people I know are the ones surrounded by death. I’ve spoken with a lot of them over the years: end-of-life doulas, hospice workers, embalmers; eco-coffin designers, grief counselors, and country homesteaders; all of whom look their inevitable demise square in the face. They’ve all taught me something different about death and dying, but they’ve also driven home a similar point: Death doesn’t have to be this freaky egg that gets cracked on your head out of the blue. Death—rather, dying—is a process, and that process is what you make of it.

One of my first writing gigs in college was all about death (which is why I’m on this coffin-shaped soap box in the first place). I freelanced for an end-of-life planning business in San Francisco, which was part practical, local resource for what to do after a loved one dies, and part death blog (that was my jam). We were always careful not to stew in topics related to death and dying in a macabre way—the landing page was baby blue, and blogging topics ranged from DIY crafts for memorializing loved ones to learning more about biodegradable urns. Why on Earth they let a 19-year-old with no knowledge of funeral homes write for them is beyond me, but I’m so glad they did. I learned that when you’re constantly surrounded by death, it doesn’t feel as foreign and unnavigable. Of course, those in the death and dying industry don’t become magically exempt from the emotional demands of death, and having the time and resources to live and die well is a privilege. But in the years I spent learning about estate planning, or talking to home health aides about what you can do literally moments after a loved one has died to find some peace, I learned that dying well is just like living well: You reap what you sow.

So where do you start? Books. Read what other people have been through in hospitals, at home, or with their own existential crises. While the titles below are hardly a definitive guide to death and end-of-life planning, they’re the ones that have helped me feel better prepared to dance into the void.

No one does death like le French

Simone de Beauvoir is a *chef’s kiss* great Frenchy to hold your hand through the topic of death. This is one of the author’s most beloved books from the 1960s, and it takes you through the experience of her mother’s death with an acute sensitivity to detail; it’s Beauvoir’s talent for focusing on the more “banal” moments of terminal illnesses and dying with philosophical panache that makes it so good.

A Very Easy Death by Simone de Beauvoir

Learn how physicians feel about patient care

This one reads like a diary, if diaries were super exacting tell-alls by medical professionals. Author and doctor Ira Byock is a palliative care physician, and getting insights into the strides and pitfalls of his end-of-life care experiences teaches you a lot about the kinds of questions you’ll want to ask when/if you ever end up navigating similar situations and medical institutions. It’s the kind of book that just makes you feel like you have someone on your side, even in the face of daunting health scares.

The Best Care Possible by Ira Byock

Yes, there are end of life doulas

We usually think of doulas as kindly granola folk who help bring wee babes into this world, but there are also doulas and death midwives who are trained to accompany those who are dying and usher them into whatever comes next. I’ve spoken with a lot of them over the years, but this book rec actually comes from a friend who just started pursuing a career in end-of-life care. “I picked up this book to learn more about reclaiming deathcare as a sacred, holistic, and intimate practice,” she told me, saying she’d absolutely suggest this book for those who could see themselves in a similar profession, or who just want to learn more about the above.


Anne-Marie Keppel

Death Nesting by Anne-Marie Keppel

There’s room for creativity

Overall, I think the United States has this knee-jerk reaction to sterilize the processes of death and dying. We exact our funerary ceremonies with a kind of uniformity and somberness—which is fair. Death is hard, and everyone grieves differently. But, dude. Have you ever seen the coffins in Ghana? They’re beautiful, and personal. A really celebratory labor of love.

The Buried Treasures Of The Ga: Coffin Art In Ghana by Regula Tschumi

Raise your hand if you’ve got daddy issues

A hard read, but a super cathartic memoir by Jesmyn Ward for anyone who has lost a loved one at a young age, or who tightrope-walks their relationship with their parents. The book follows the author’s relationships with five different people in that sense, and it’s also a powerful portrait of what it means to live and mourn as a Black person in the American South.

Men We Reaped: A Memoir by Jesmyn Ward

That’s one way to cope

We’ve all had it happen, or seen it happen to someone else: Rather than confront our grief, we pour ourselves into a new hobby or time-suck pursuit (cc: all those quarantine sourdough loaves). And that’s OK. There’s no etched-in-stone timeline for grief, and this memoir by Long Litt Woon, written about her late husband, is a great reminder of that; it’s about all the curious, dark, and beautiful places our grief can take us, such as mushroom hunting. “Long tells the story of finding hope after despair lightly and artfully,” writes the New York Times in a review that I think really hits the nail on the head. “[She writes with] self-effacement and so much gentle good nature that we forgot how sad she (and we) are.” Then, like the narrator, we remember. But guess what? We’re still in one piece. 

The Way Through the Woods by Long Litt Woon

If you’re not spiritual…

… Then read every essay and book by Joan Didion, honestly. Her writing will spoon feed you a tough yet deeply observant love, and feels like getting a sit-down chat from your most level-headed relative about hippies, the Pioneer West, and, in this case, the death of her husband and collaborator John Gregory Dunne. So many books on death and dying are deeply spiritual or religious, but for those of us who have only ever had faith in logic and, IDK, Pokémon, Didion is your gal. No one else writes quite like her about the surreal logic of grief-brain with as much honesty and accuracy. 

The Year of Magical Thinking by Joan Didion

One for the kids

Do you have Muppet Feels? (Of course you do.) You might remember the legendary Sesame Street episode where Big Bird deals with Mr. Hooper’s passing. Heavy shit, man. The children’s book adaptation of that episode brings the same nuanced tenderness of the show, and literally everything in life is better when Big Bird is by your side. Give this to a kid, or anyone going through it.

I’ll Miss You, Mr. Hooper by Sesame Street

See you in the next life.

Complete Article HERE!

Qualitative Study Shares Strategies for Successful End of Life Conversations for Patients With Cancer

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End-of-life (EOL) discussions such as advanced care, palliative care, and discontinuation of treatment are consistently being missed, according to a study published in JAMA Network Open; however, investigators highlighted existing strategies that are being utilized to achieve successful EOL conversations.

Investigators found that out of 423 outpatients encounters with 141 patients with advanced cancer, only 21 encounters (5%) included EOL discussions. When investigators included a random sample of 93 encounters, 35 encounters (35%) included missed opportunities for EOL conversations. Three patient/oncologist dyads had more than 1 encounter with a conversation pertaining to EOL, which translated to 17 of 141 dyads (12%) having at least 1 event of EOL discourse. The dyads included 13 of 39 oncologists (33%).

“In this secondary analysis of outpatient oncology visits, EOL discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EOL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts,” investigators of the study said. 

Investigators identified 3 strategies that are being used to navigate opportunities for successful EOL conversations:

Those who take advantage of opportunities for EOL discussions are able to reevaluate treatment options based on patients’ concerns, outlining the risks and benefits between treatment continuation and discontinuation. When suggesting chemotherapy for treatment, it is imperative to be transparent in letting patients know it could prolong survival, but there would be discomfort from adverse effects, the investigators stated. This allows the patients to make decisions about their own future.

Another strategy that has been utilized when making EOL decisions is allowing patients to be experts on their treatment decisions in order to meet their goals. This was accomplished by positing questions such as “What would you like?” and “What was the goal you would like to attain?”. By exploring a patient’s goals and allowing them to lead the conversation, the patient can shape treatment recommendations. Patients are able to explore their thoughts and feelings with regard to treatment discontinuation in a manner that is approachable. This allows one to act as a facilitator who creates an environment of reflection, while the patient shifts their focus to decision making.

The use anticipatory guidance to frame conversations pertaining to treatment reevaluation is another useful strategy. Anticipatory guidance can be used to identify a potential timeframe in which patients will need to make decisions regarding quality of life over cancer-directed treatments. During this time, it is the oncologist’s responsibility to provide sign posts to convey when it may be time to consider quality of life over treatment. This helps patients set appropriates goals and limits as to when they might like to discontinue treatment.

There are a number of hurdles that lead to missed opportunities for or deflected EOL conversations, one of which including responding inadequately to patient concerns. Patients who are concerned about disease progression or dying are often met with partial, avoidant, or absent responses instead of opening the conversation about EOL, which limits the opportunity for patients’ conversations around goals, values, and preferences. Additionally, giving little to no response when a patient expresses fear at the idea of living for years with late stage disease could prevent the occurrence of conversations around disease burden, treatment decision making, and EOL care.

Although speaking about the future optimistically may seem helpful it does little to address patient concerns. Instead of using anecdotes about other patients who exceeded life expectancy, consider using that moment to realistically discuss the patient’s prognosis.

Additionally, expressing concern over patient’s decision to discontinue treatment could be another opportunity for a missed discussion. Although one might be able to justify their treatment decisions by stating that they are in line with the patient’s goal, it is a missed chance for discourse pertaining to quality of life and treatment goals. Moreover, declaring a patient’s next steps for treatment without holding a proper conversation is yet another missed opportunity wherein a conversation about the patient’s options could have taken place.

“Although we recognize that not every patient or appointment may necessitate an EOL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they ‘would not be surprised if they were admitted to an intensive care unit or died within one year.’ Despite the urgent necessity of EOL discussions within this population, we found far more missed opportunities than actual discussions in this analysis,” the investigators concluded.

Reference

Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193

Complete Article HERE!