Category: Talking about death

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How to talk to your kids about Death

— An age-by-age guide

Talking to your child about death can be daunting, especially when you are also grieving.

By Kelly Fradin

As a pediatrician and a parent myself, I often hear from families in times of need. A child’s beloved grandparent died after a struggle, a child’s father died in an accident, a child’s teacher or friend died unexpectedly, or even a beloved pet dies, and I get a panicked call.

As parents, we want to protect our children, but we also want to raise them to be prepared for life’s realities. While talking to kids about death is hard, it’s important. And we can explain death in a way that’s developmentally appropriate while minimizing the trauma and fear our children experience.

Mom talking to daughter, both somber

Get ready to talk to your kids about death

Before diving into a discussion, consider your own emotional state. Are you feeling ready to discuss the death? Do you have all the details yet? While you will never look forward to sharing upsetting news with your child, it’s important that you feel prepared. 

On the other hand, this isn’t a talk you can put off forever. Even if they can’t explain it, a child knows when there has been a tragedy. Nonverbal communication, like body language, distractedness and tears, cannot be hidden from our observant children.

And kids have big imaginations. It’s better to tell them the truth than to let them imagine the worst.

Get help if you need it

Sometimes a grieving parent is not in a mindset to support a child’s needs. If you are in this difficult space, ask your community to step in and care for your child until you’re better able to do so. Prioritizing your own well-being in these moments is one of the best things a parent can do.

Don’t be afraid to cry

Many parents fear falling apart in front of their children and showing their grief. I think this fear is largely unfounded. We want our children to know that big feelings are okay. Crying in front of your child will not traumatize them.

In fact, allowing them to support you in your sadness can be helpful because it’s an opportunity for connection.

Choose your words thoughtfully

When you are ready to talk to your child, choose your words carefully and do not hesitate to say you’re not sure. We don’t want to use euphemisms for death like “sleeping” or “crossing a bridge” that might confuse a child.

We also want to reinforce a child’s sense of safety and anticipate that they may need reassurance that they are okay and the other people they care about are okay.

Age-appropriate ways to talk about death

As we dive into considering death by age, also remember that children develop at their own pace and children’s cognitive and developmental stage may not match their chronologic age and that’s okay.

Mom talking to daughter, both somber

Children under two or children who are developmentally pre-verbal

Be upfront, even with toddlers

Children in this age bracket may not be able to fully understand death and loss. However, when someone in their orbit dies they still deserve to know about it, particularly if it disrupts their routine. Using short declarative statements “Nana is not coming because she died” and not going into too much detail would be advised.

Consider your spiritual beliefs

When your children are young, it’s a great time to consider your values and beliefs and discuss them with your coparent. If you are religious or were raised with religious beliefs, decide if you’ll be sharing those with your child.

Talk about death in general

Little ones can learn about death through nature. Dead plants, dead bugs, or even roadkill can be relatively benign opportunities to expose children to the concept of death.

Many parents try to avoid talking about death when it’s not an immediate issue, but it’s a lot easier for a child to confront the death of a plant or even an animal than the loss of a loved one or another human being. Talking about these kinds of deaths is a good way to introduce the topic.

Children three to eight

Prepare for lots of questions

Children in this age group can generally understand death and may ask a lot of questions. Developmentally, it’s normal for them to fixate on new information they’ve learned.

This can translate to a child who never used to talk about death talking about death a lot, even up to 10 times a day. This age group will also draw pictures or play games about death as a way to process this new knowledge.

Parents often worry that an ongoing focus on death is a symptom of trauma—and it can be. But thinking about death a lot when it’s a new concept or someone you care about has died—even for weeks—is also a normal adjustment reaction.

Younger children can have magical thoughts about death, that maybe it will be reversible or that perhaps thoughts can cause death. Sometimes hearing their thoughts can help us target what information we share.

Show them that it’s okay to talk about death

Many parents find their children’s questions about and focus on death difficult, especially when grieving themselves. As uncomfortable as it is, we want to teach our children that talking about death (or any hard thing) with their parent or supportive caregiver is welcome.

We may need to discourage talking about it in socially awkward situations such as telling strangers at the grocery store, but we do not want to teach them that death and anxiety about death are totally taboo. If we do, they may continue to have questions and worries about death and feel alone.

Talk about death in general

If a child this age isn’t experiencing an acute loss, it can still be a good idea to introduce the concept of loss, both to prepare a child for the inevitable experience or to build empathy and understanding.

Look at books like The Invisible String for kids under five. For older children, many movies and books have death involved in the storyline. This passive exposure is a safe way to start the conversation. Talking to your children about the deaths in books or movies may feel safer for them because of the distance, but still may trigger a lot of questions.

dad talking to son on a dock overlooking a lake

Children nine and up

Let them seek support from friends

Children in this age group may be nearly adult-size on the outside, but in some ways, their budding maturity can make them more fragile. They are less likely to ask a lot of questions and more likely to internalize a lot of worries.

Parents of children this age who grieve should also understand that their child may not come to them for support. Tweens and teens often want to spare their parent and look to their peers instead.

Make sure they have someone to talk to

If your child withdraws or doesn’t want to talk to you about the loss, the first question should be, “If you’re not talking to me about it are you talking to someone else?” Friends, parents of friends, teachers, coaches and school counselors can all be part of the team supporting your child’s grief.

Sometimes a heads up for these important people in your child’s community can help them to be more empathetic and receptive to supporting your child. It’s best to be clear about what you’re asking, “My child is grieving a loss, so I would appreciate it if you could check in with them.

On the other hand, privacy matters to children too and taking a break from thinking about their loss can be restorative.

For some children, it may be better to say “My child is grieving a loss and has a lot of people speaking with them about it. Please don’t feel like you have to say something or check in, but I wanted to let you know in case they bring it up or if you see something that has you concerned in any way.”

Give them a sense of control

Regardless of your child’s age, after you inform them of a loved one’s death, you want to leave them with feelings of safety and agency. What that means is acknowledging that while they may feel terrible, it’s okay to be sad and things will get better. There will be happy days and things to look forward to despite your tragedy.

To encourage a child’s feelings of control over the situation, sometimes a project like a memory box or a special card or photo for a loved one who may be hurting can be helpful.

For older children, advocacy can be healing in addition to potentially making positive change in the community, connecting with others who have lost loved ones for the same reason can make them feel less alone in their grief.

Every family’s take will be different

Undoubtedly every family is unique in how they consider loss. Our own upbringing, values, religion and culture will determine the words we choose. But death is universal and an inevitable part of life. When connecting with your child to teach them about death remember that there is no one perfect way to do it.

What’s important is to be authentic and connect with your child to talk about it in a way that makes sense to you. As with grieving adults, grieving children can have an unpredictable course, with holidays, songs, places, and memories often causing more sadness weeks or months after a death. Continued check-ins and connection can help a child feel safe and supported in these moments.

Death is an ongoing conversation

If you’re not acutely in a loss and still trying to teach a child about death, just as with other topics it’s often not just one conversation, but rather a series of small conversations where your children will learn and understand more.

Great resources for teaching kids about death

Complete Article ↪HERE↩!

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Respecting patient autonomy and the importance of hospice care

By Paul B. Hofmann, DrPH, MPH

A KevinMD article about Jimmy Carter’s end-of-life care decision, “The heartbreaking story of Jimmy Carter: a call for Medicare reform in end-of-life care,” indicated that the former president’s decision was heartbreaking. However, I have a different view. In my opinion, the 39th president, at age 98, made an autonomous and well-informed decision.

On February 18, The Carter Center announced in a statement that “after a series of short hospital stays, former U.S. President Jimmy Carter decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team.”

In the March 29, 1984 issue of USA Today, I stated that “often there is an obscure point in the continuum of intensive treatment when it is death, not life, that is being prolonged. We must remember that pneumonia, once described as the old man’s friend, has died. Thus it is even more important that patients be allowed to remain the beneficiaries of modern technology, not its victims.”

In the Spring 1994 issue of Stanford Medicine, I wrote that “with distressing frequency, we’re doing too little for patients and too much to them. Real caring often means choosing not to perform invasive diagnostic and therapeutic procedures that extend the dying process instead of improving life.” When a patient in the ICU or on a medical surgical unit is unlikely to survive to be discharged, studies have confirmed that a DNAR order, along with a focus on comfort measures emphasizing pain and symptom management, not only extends a patient’s remaining days but also improves the quality of his or her life during this period.

A column co-authored with internist Lawrence Schneiderman and former chair of the ethics committee at the University of California, San Diego Medical Center, published in the May/June 2007 issue of the Hastings Center Report, was titled “Physicians Should Not Always Pursue a Good ‘Clinical’ Outcome.” Although good clinical and patient outcomes are usually aligned, this is not always the case. Predictably, cardiologists are proud of helping the patient maintain a strong cardiac output, nephrologists want to make sure the patient’s kidney function is adequate, and pulmonologists properly concentrate on lung capacity and viability. However, if the patient has metastatic cancer with no likelihood of survival, timely referral for hospice services should be the priority. Under these circumstances, death should not be viewed as a medical failure. Conversely, causing or allowing a bad death represents an ethical failure.

An article co-authored with Douglas Van Houten, assistant chief nursing officer, Washington Hospital, Fremont, CA, appeared in the January/February 2014 issue of Health Progress. It was titled “When the ICU Is Not the Answer.” We identified ten recurring issues that characterized many cases when we conducted ethics rounds. For example, one such issue was “Staff members are concerned and uncomfortable when asked to provide treatment they feel is not in the patient’s best interest, and they experience moral distress in providing what they consider painful and inappropriate treatment.” Consequently, 12 guidelines were recommended based on preventive ethics to reduce the number and magnitude of issues potentially compromising patients, families, and staff members. The first guideline was “As early as possible after a patient’s ICU admission, assuming the patient is unable to express his or her preference (and has prepared no advance directive regarding such preferences and a designated surrogate), family members or friends should be asked for information about the patient’s values, goals, and any previously stated treatment preferences. Potential treatment goals are identified by the patient’s principal attending physician in light of this information, and expectations are clarified.”

Unfortunately, patients near the end-of-life are often referred for hospice services and palliative care belatedly. Instead of lamenting President Carter’s decision to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention, the author should have endorsed and applauded this decision.

Overall, it is important for health care providers to recognize the limitations of medical interventions and respect patients’ autonomy in making end-of-life decisions. As health care professionals, it is our duty to provide patients with all the information they need to make informed decisions and support them in their choices. Hospice care and palliative care can provide patients with a more comfortable and dignified end-of-life experience, and we should strive to ensure that these options are available to all patients who need them.

Complete Article ↪HERE↩!

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A guide for the end

— Woman finds support in end-of-life doula program


Jane Schostag (left) sits with her end-of-life doula, Mary Beth Trembley, at Schostag’s Skyline home on March 15. When Schostag learned she had terminal cancer, she sought out Trembley as a doula for support and guidance on her end-of-life journey. This week Schostag entered hospice.

By Brian Arola Mankato

Jane Schostag doesn’t shy away from discussions about death, even her own.

The Skyline woman, a longtime English teacher at Mankato West before her retirement, has terminal cancer.

Rather than avoiding the topic of her own mortality, Schostag has been spending what will likely be her final months reflecting on and preparing for what she calls her “farewell journey.”

An end-of-life doula is helping guide her.

“People have doulas when they have babies because having babies is a lot of work, it’s stressful,” she said. “Well, so is dying, so you got a coach on one end and a coach for the other.”

End-of-life doulas serve as nonmedical companions offering support and guidance on death, sometimes complementing medical services provided by hospice care. A doula’s specific duties vary depending on their background and the person’s needs, but one important quality they share is a willingness to acknowledge and talk about death.

Having doula Mary Beth Trembley with her during this stage in life, Schostag said, is like having a “caring, informed friend” willing to tackle the topic head-on.

By putting death on the table, the hope is people live their final days to the fullest instead of awkwardly avoiding any talk of what will inevitably happen.

“We should treat it as a sacred time and support that process,” Trembley said. “People think it’s morbid to talk about death and dying, but we’re all going to die. It’s part of life.”

Trembley is one of several trained end-of-life doulas in the Mankato area — she received her training through the Conscious Dying Institute in Boulder, Colorado. These doulas meet up monthly to support each other and share resources.

The services can be available on a volunteer basis or paid depending on the recipient’s circumstances.

When they find out about someone in need of a doula, they consider which of them would be the right fit. Sometimes a person will meet with multiple doulas, such as when Trembley introduced colleagues to Schostag because she knew they’d get on well.

Their end-of-life doula network in the Mankato area was just getting up and running when the COVID-19 pandemic started, which made connecting with more people difficult.

Now, as the network looks to work with more people, Trembley and Schostag hope sharing their experiences as doula and recipient leads more people to become doulas and more people to seek out the services.

Diagnosis

Schostag found out she had a malignant lesion on her tongue about two years ago at age 76. In her memoir, the tools for which her daughter, Lindsay, gifted to her a couple of Christmases ago, she described the cancer as making her sound like she’s been “hitting the margaritas.”

An oral surgeon removed the cancer, but she next faced a decision about whether to start radiation treatment. She remembers hearing in detail about how the treatment could have debilitating, painful impacts on her head.

Having already enjoyed a full life, she chose to prioritize the quality, rather than quantity, of the rest of her life. It meant forgoing radiation.

“Even if the cancer returns,” she wrote, “I do not think I will choose to do radiation or chemotherapy. At my age, I fear sickness or debilitation more than death.”

If she were younger and still had children to raise, her decision might’ve been different. She feels gratitude for the good run she’s had — from a fulfilling professional career in education to advocating for children in the court system to being a wife to husband David, a mother to Lindsay and a grandmother.

She notes she isn’t saying others should go the route she went, but thinks people who’ve lived abundant years should examine their options before immediately proceeding with unpleasant, possibly debilitating treatments.

To her, doing so risks “outliving our quality of life.”

In July, Schostag learned she had a swollen lymph node near her surgery site. A biopsy on the node misdiagnosed it as negative for cancer, giving it three months to grow before confirmation of the cancer’s return was revealed by another biopsy in October.

By then, the cancer was rapidly spreading. She again elected to forgo treatment.

Kindred spirit

Schostag was already familiar with the doula program through past presentations and had it in mind to seek out when she needed it. If people need the guidance of counselors before going to college and other important steps in life, she said, why not seek out guidance before death?

“Why not a person who’s an expert at making the best of what you have left, which is really what I see doula work as being,” she said.

She and Trembley knew each other through their church, Unitarian Universalist Fellowship of Mankato. The two met, along with David, in October to review what doula services entail and set a plan for regular meet-ups.

Having family involved and on board makes it easier, Schostag said.

“I think it’s good for families to talk about it,” she said. “We’re gonna deal with the preparations that need to be done. We’re gonna talk about what our thoughts are and what we’re scared of.”

Family and friends otherwise might not know what to say to someone facing death, creating an awkwardness of avoidance. Embracing the subject brings it to the forefront, creating space for people to say what needs to be said before it’s too late.

“It’s interesting what your demise does to other people,” Schostag said.

Doulas can help people work through what to say to their family and friends, Trembley said. They try to bridge gaps, whether the gap is a needed conversation with family or establishing a will and advanced directive.

“When you’re with somebody who likes to talk about death and dying, it’s a different conversation,” she said.

Trembley joined Schostag on her medical appointments, offering another set of ears. Although not all doulas have a medical background, Trembley’s career as a psychiatric nurse proves helpful.

The doula’s work doesn’t necessarily end when their companion’s life ends. They can be a source of comfort to the surviving family afterward.

A grieving person sometimes receives an initial outpouring of support from their social circles before people move on with their lives. Trembley sees potential in doulas continuing to offer support for as long as the surviving family needs it.

Trembley and Schostag think of themselves as kindred spirits when it comes to outlooks on life and death, which furthers their bond. Trembley described Schostag as an “amazing person” whose wealth of life experience will educate people about an important resource.

“By talking openly about death and dying and doula work, she’s helping,” she said.

Schostag’s journey took its latest turn this week when she found out her cancer had spread to her hip area. In one sense, she said after finding out, she felt “very lucky that I went as long as I did without pain.”

Her hospice team has been wonderful, she added. So has her family, friends and doula.

Shortly after starting with Trembley, someone asked Schostag about her doula.

“She’s great,” Schostag recalls responding. “She’s really into death.”

In a society so averse to conversations about death, she said, having a doula on her journey makes the end less lonely.

Complete Article ↪HERE↩!

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The Art of Dying

— Overcoming Our Fear of Death

Enduring, accepting, and embracing the inevitability of one of mankind’s greatest fears.

By Jocelyn Tatum

On my desk at home, I have a true-to-life-sized concrete sculpture of a skull with little porcelain bluebirds resting on its mouth, ears, eyes, and one on its crown. I found it at ArtsGoggle in Fort Worth 13 years ago when the local arts festival was just starting out. I gravitated toward it because it reminded me how fleeting and fragile life can be. The birds, to me, represented the creativity that comes forth in the face of our finitude. The idea was that this mortal reminder would help me get past writer’s block. After all, as a journalist, these stories are not my own. They are your stories. I am merely the vessel who delivers them using my passion and acute sensitivity to humanity. And I borrowed this idea from 14th-century monks who kept skulls on their desks as a reminder of their mortality as they wrote their philosophical dissertations, so this idea wasn’t new. “For dust you are, and to dust you shall return.” Sounds familiar, right? This symbol of death on my desk was a reminder to face my fears head on, and that I am just passing through this world, adding my thread to the massive tapestry that is the story of all us.

I have always thought of myself as a pilgrim. Just passing through. The joys in life like my son, friendships, or romantic partners are merely finite gifts lent to me from the universe, never mine to keep or clutch. I have found that the pain is in the clinging to life or avoidance thereof, whether it is my own or another’s. Peace and serenity lie somewhere in the middle. Everything temporal, everything passing. Life doesn’t have to be so serious, and I think my journey exploring my own non-imminent death has reminded me of this. When achieved, this allows me to live with a free spirit and detachment to the things that weigh me down. And as things have gotten heavier for me lately with my father starting palliative care for his cancer and the loss of a great love in a breakup, I decided it was time to stare death and grief boldly in the face.

Two Fort Worth women just launched their business, The Art of Dying, in January 2023 after completing their death doula training. When I came across their Instagram (@theartofdyingfw), I became curious. Very curious. So, I kept digging. It turns out that a death doula is like a birth doula but assists with the process of dying. They are an end-of-life companion who can guide the dying, whether that is connecting them to a number of resources or inspiring ideas for how to celebrate the life they have left. “The Art of Dying [is a] small collective that offers support, celebration, and companionship to individuals and their loved ones through the end of life.” They offer services for those who have a terminal diagnosis or those who want to plan early in life and are non-imminent.

These end-of-life practices have been steadily growing since the pandemic, according to Alvin Harmon, the head of the National End-of-Life Doula Alliance on an NPR news segment that aired Jan. 17. “How people died, that was what became important, having that safe space, that whole space, people dying in a manner that felt safe to them and was important to them,” Harmon said on air. Any little dignity people had left when dying was stripped of the dying during the isolating loss of COVID-19. This phenomenon led Fort Worth’s Lacy Buynak to get her death doula training. She lost her grandmother during the pandemic.

“As I was grieving her death, I was having this huge collective grief for all of these people who didn’t get that,” she says as tears form in the corners of her eyes. “I started thinking that that has got to be one of the worst ways to go.” She got to say goodbye to her one last time before she died but realized so many others did not have this experience.

Now business partners in all thing’s death, Buynak and Taykor Bell had been friends since attending school together in 2001. Twenty years later, in April 2021, Buynak called Bell to catch up. They had been talking about something else when Buynak said, “I did a crazy thing. I signed up for a training program to be a death doula.” She remembers getting a “holy-shit, so-did-I”-type of response.

The two had been keeping an ear on the heartbeat of death for years as a separate fascination while a parallel nationwide phenomenon of making death more palatable, eco-friendly, meaningful, and even enjoyable was disrupting the $20 billion funeral industry, which celebrity mortician death advocate Caitlin Doughty argues exploits people’s grief and turns it into a profit. After their own experience with death, Buynak and Bell saw a need to provide a comprehensive and holistic service in Fort Worth that also educates the community one death at a time. “We want to hold space for people in those moments. Raising awareness for collectivism, the practice or principle of giving a group priority over an individual, for being there for people,” Bell says.

Bell had her first existential crisis in grade school. She thought about dying and going to heaven and thought, “That is forever.” Her mind kept seeing “road barriers” to this thought of permanence, and anything past that scared her (to death). She couldn’t understand forever. For her, something so big and unknown brought up this debilitating fear. She knew then that death would be her biggest teacher, and her training for this vocation is her life experience. Not only has she read many books over her 40 years alive, but she was able to be there for her mother as she was dying in a way that she would want someone to be there for her. It occurred to her that many people die in the most isolated and sterile way in the U.S. even before the pandemic.

“The vision is to put ourselves out of business to remind our culture to do this for each other. This is a business needed more than ever. There are so many ways people can feel vulnerable and alone, and death is when that is most poignant,” Bell says.

This year marks the 10th year since Bell’s mother died of adrenal cancer. The story gave me chills. When Bell decided to leave her current career, she looked at the amount of money her mother left her, an account she was hesitant to touch because it was the last lifeline to her mom, and it was the exact amount she needed to get her death doula training. Then Buynak called.

DeathShadowFIN.jpg Illustrations by Brandon Hayman[/caption]

My Journey

I met with Bell and Buynak for sparkling tea at Leaves Book and Tea Shop in Fort Worth’s SoMa district. They had a big biodegradable binder waiting for me on the table with their logo on the front. Page 1: “In this binder, you will find a comprehensive list of legal documents to gather, logistics and arrangements to consider, as well as various comfort and care services you may be interested in learning more about.”

Section 1, “Legal: Advance Directive, Durable Power of Attorney, Last Will and Testimony.” This is definitely the least enjoyable part of the process. I went to the websites, which was about what I expected from government sites. Then I had to download a bunch of PDFs to print, fill them out, and then take them to be notarized. Then file them. Bell recommended using RocketLawyer (not a shameless plug) unless you have some massive estate to work through.

Not going to lie, this part made me feel uncomfortable. Itchy. It asks a lot of questions that I really don’t feel like I know the answers to yet. And when it got to the body disposition authorization that included some subtext about whether your body remains are acceptable if you want to donate it to science, I had to step away and get some fresh air. “So you’re saying my body could be rejected even after I die?” I thought.

“We want people 40 and younger to get their [act] together. It can be sad, confusing, and beautiful,” Bell told me regarding the Art of Preplanning, a service they offer to those who get their affairs in order even if death isn’t imminent.

Well, I do not have my act together. And I am not going to lie, this has brought up some feelings. So, I decide once more to procrastinate on the legal paperwork, which Bell and Buynak have both said I need to knock out first because something can happen to us at any moment. Digging into the resistance, I redirected my efforts into research about how to overcome this fear. What I found brought me peace beyond what I could have ever expected.

Overcoming Fears

“The cave you fear to enter holds the treasure you seek,” said 20th century author Joseph Campbell.The New York Times reported a phenomenon in an article titled “South Koreans, Seeking a New Zest for Life, Experience Their Own Funerals” where people choose to face their mortality. “After an instructional lecture and video, participants are led into a dimly lit hall decorated with chrysanthemums, where they sit, often tearfully, beside caskets and write their last testaments. Then they put on burial shrouds and lie down in the coffins,” the article reports. What surprised me is many participants photographed were young and healthy with no end in sight, but some had a terminal illness and wanted to prepare while others struggled with suicidal thoughts and wanted to put those to rest. They reported emerging from their mock funerals and meditations around death with a new and hopeful perspective on life.

Buddhist monks contemplate images of decaying bodies to unlock the door living in the present and letting go of fears. “It makes disciples aware of the transitory nature of their own physical lives and stimulates a realignment between momentary desires and existential goals. In other words, it makes one ask, ‘Am I making the right use of my scarce and precious life?’” Arthur C. Brooks wrote in an op-ed piece for the NYT.

Guided meditations on mortality such as this can be one of many life-affirming activities that can give us a new take on life, according to the resourceful website orderofthegooddeath.com. The website is an endless resource for all things death with everything from how to have conversations about it to how to have an affordable and intimate funeral at home. It was created by YouTube star, mortician, former cremator, and best-selling author of the memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory, Caitlin Doughty. In an interview on a segment on “CBS Sunday Morning,” Doughty says, “Americans need to think more about end-of-life rituals, instead of keeping death at a distance.” Her advocacy around changing the way we die and think about death has started a movement across the country. “They are just of the belief that the more we talk about it openly and honestly, the less terrifying it needs to be,” the “CBS Sunday Morning” reporter narrates. Doughty’s more recent book, From Here to Eternity, illustrates how death is handled in a more meaningful and intimate way in cultures across the world. What does it mean to have a good death? Is it not to be so separated and detached from the process, to stop looking away?

Doughty even offers a course, complete with videos, lessons, and guided meditations for the price of $195, called Mortal that gives patrons the tools for facing death. Lessons with titles like, “I create my own meaning,” “I meet my true self on my deathbed,” and “There are parts of my death I can control,” help people better cope.

It made me think, why do we wait until the end to start celebrating life? Why do we wait until we are at our rock bottom, when life strips us of everything that we think validates us as humans, to start living in the way we were always meant to?

Ironically, facing death and working with death doulas like Matus and Buynak helped me release the inhibiting fear of loss and to rethink the way I live. And I have been able to show up differently around my father’s terminal cancer. I don’t need to look away, nor do I need to fix it. I can just be with him in it. It puts me at ease to know there is a slew of tools and support out there.

When I was little, I had a fear of being eaten by a monster and dying. I would lie in bed each night staring at the closed closet door waiting for it to open at any time to claim my life. One night, I had the thought, “What is actually in there?” I got up and looked. Nothing was in there, and I started sleeping through the night again. Peace ensued, and a nascent lesson was learned — the pain was in the resistance, the looking away.

American Poet Andrea Gibson’s YouTube video went viral after she famously shared her story about how her cancer diagnosis transformed her lifelong debilitating fear of death into “boundless bliss.” Once she learned that her whole torso was filled with masses, she said she felt her heart immediately begin to open up. She now walked through the world realizing that she may not be here tomorrow, which pushed her deep into the present moment. The paradox is that facing death cured her fear of death. “Why would I waste my time not in search of the celebration [of life] and not in search of awe? There has been so much love this year that I believe legitimately everything is on my side, and I believe death too, is on my side. And the second I realize that death itself is on my side, I felt like nothing could kill me,” Gibson says in an interview.

DeathPartyFIN.jpg Illustrations by Brandon Hayman[/caption]

The Dying

“It is the most supremely interesting moment in life, the only one in fact when living seems life,” wrote Alice James — William and Henry James’ sister — as she faced death.

Whenever I experience some tragedy in life that brings me to my knees, there is also a death to my “self” that happens, which then strips away my ego. All spiritual transformations and religious conversions speak of this. Nature does too after a roaring forest fire burns thousands of years of story to only be reborn in new growth that is stronger. I have to ask myself, is the key to a more meaningful and deeper life usually comes after facing death, figuratively or literally? “All life is lived in the shadow of its own finitude, of which we are always aware — an awareness we systematically blunt through the daily distraction of living. But when this finitude is made acutely imminent, one suddenly collides with awareness so acute that it leaves no choice but to fill the shadow with as much light as a human being can generate — the sort of inner illumination we call meaning: the meaning of life,” Maria Popova of The Marginalian n wrote in an essay.

I watched the movie “Marcel the Shell” the other day, and at the end, the main character, Marcel, reflects on a great loss, the loss of his beloved grandmother, Connie, also a shell played by Isabella Rossellini. Before Connie dies, she led Marcel to a quiet place to perch in the basement where the window was always cracked. There the wind blew through Marcel’s shell creating a new sound, a new experience. In the face of loss, Marcel experiences the meaning of life. “It connected me, I felt, to everything. Because if I wasn’t there, the sound wouldn’t exist, and I felt like everything was in pieces, and I stood there and suddenly we were one large instrument. I like to go there a lot because it reminds me that I am not just one separate piece rattling around in this place, but that I am a part of a whole. And I truly enjoy the sound of myself connected to everything,” Marcel says.

Just before she dies, Connie reads the poem “The Trees” by Philip Larkin.
The trees are coming into leaf
Like something almost being said;
The recent buds relax and spread,
Their greenness is a kind of grief.
Is it that they are born again
And we grow old? No, they die too,
Their yearly trick of looking new
Is written down in rings of grain.
Yet still the unresting castles thresh
In full-grown thickness every May.
Last year is dead, they seem to say,
Begin afresh, afresh, afresh.

We tend to look at death as a failing of our bodies (or minds) when it is a natural part of living, of returning, of renewing. Experiencing death is one of the few things all humans have in common, which makes it a thing that connects us in our humanity like the wind in Marcel’s shell. I learned many lessons planning my death with The Art of Dying’s Buynak and Bell. Lesson 1: When that wave of grief hits, whether it is losing my father to cancer, my boyfriend to a breakup, or facing the end of my own life, I can’t swim against the current. I shall surrender to the fear and pain and fall back into the healing water until that final wave washes me ashore.

Lesson 2: To start living as if it could all end tomorrow and work with the doulas to plan a dinner party with my favorite people complete with toasts and convivial conversations about dying, loss, bucket lists, and to celebrate life.

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The death question

— How to talk to clients about their life expectancy

It may be a grim topic, but death is a key factor in retirement planning.

By Nathan Place

How long do you expect to live? It’s a touchy question, but research shows asking it can significantly help investors prepare for retirement.

Death is rarely a pleasant topic of conversation, but it’s a key factor in retirement planning since the longer you live, the more savings you’ll need to finance your life. But because it’s uncomfortable, many savers avoid realistically estimating their own lifespans — which can lead to poor planning.

“People tend to underestimate how long they will live in retirement, which means they tend to save too little, spend too much and run out of money in later life,” said Olivia Mitchell, executive director of the Pension Research Council at the University of Pennsylvania.

The good news is that, according to new research, even the most cursory conversation on the subject can make a big difference. Mitchell recently co-authored a study by the Leibniz Institute for Financial Research at Goethe University Frankfurt, which surveyed people’s estimates of their own life expectancies. In some cases, the test subjects also read a paragraph about a hypothetical retirement saver (“Mr. Smith”) and answered a multiple-choice question about what he should do.

But the study wasn’t interested in how well the respondents guided Mr. Smith. Instead, it focused on how accurately they estimated their own life expectancies after answering the questions. The researchers measured the gap between people’s subjective and actual life expectancies — in other words, how long they thought they would live versus how long they would probably live in reality, based on their gender, age and other demographics. In general, the average gap was 17.1%. But after reading the Mr. Smith paragraph, that gap shrank by 5.2 percentage points.

“In other words, simply prompting people to think about a financial decision related to longevity risk affected peoples’ estimates of their own anticipated lifespans,” the study said.

For financial advisors, what this means is that even just broaching the subject of a client’s lifespan can substantially help them think more clearly about the future. In some cases, that can mean better preparing for longevity risk — the danger that a person will outlive their retirement savings.

“When financial advisors are doing their jobs well, they will help people understand not only the too-simple concept of life expectancy, but also the notion that half the people live longer than this mean,” Mitchell said. “Therefore, plans are needed to cover the eventuality of living to 100 or beyond, which is what longevity risk refers to.”

Of course, this is easier said than done. How does one remind a client of their own mortality and then have a calm, unemotional conversation about finances? Advisors have a wide range of methods. When possible, some said, it helps to make it funny.

“I find it’s best to be compassionate, direct, and (for the right clients) inject a little humor,” said Louis Leyes, a financial planner and partner at Stages Planning Group in Pennsylvania. For some investors, he puts the question this way: “So, when would you like to take your leave of this mortal coil?”

Lora Hoff, a CFP at IPI Wealth Management in Illinois, said she likes to “keep it light.”

“I say something like, ‘My plan will need to include some assumptions about how long you will live,'” Hoff said. “‘I can use the actuarial default, or I typically use age 100, unless you have some specific preference of what you want to see — I don’t like to kill anybody off in my planning!’ Then I just laugh about it.”

Others use technology, including software like eMoney or MoneyGuidePro, to estimate the client’s lifespan. That way the question stays mathematical instead of emotional.

“We use MoneyGuidePro’s questions about whether they smoke, how healthy they are and the longevity in their family and let the program decide on their lifespan,” said Lisa Kirchenbauer, a CFP and founder of Omega Wealth Management in Virginia. “Then we discuss and change it to fit what the client is comfortable with, explaining the pros and cons of the choice.”

Some advisors say that by treating death as a purely practical matter, they can keep the conversation from getting uncomfortable.

“I actually don’t find it difficult to talk to clients about mortality,” said Anna Sergunina, a CFP and president of Main Street Financial Planning in California. “I explain to them that we need to have an ending point to their financial plan, to make sure we’ve estimated properly how long their money will last.”

Leibel Sternbach, a financial advisor and the chief technology officer of Fusion Capital Management in Texas, said most clients aren’t shocked by the death discussion.

“Our job is to ask the hard questions,” he said. “They know and expect it of us.”

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How To Support A Loved One Suffering From A Life-Threatening Illness


By Amanda Chatel

Watching someone you love suffer through an illness that could possibly lead to the end of their life is one of the most difficult things anyone can encounter. It doesn’t matter if your loved one lived well into their 90s or they’re still in the prime of their life — it’s a tragic loss for everyone involved. That’s especially true for the one who’s been diagnosed.

“You can be the most intelligent, organized person in the world, but hearing distressing news about your condition makes it hard to keep things straight,” associate medical director for Capital Caring Farrah Daly, M.D. tells WebMD.

Because of this, trying to navigate how to support a loved one in such a position can feel daunting. You want to be there for them, but you also want to give them their dignity and space when they need it. You want to be helpful, but also not treat them as though they’re incapable of things that they can still manage — and even want to manage — to do. It’s all about finding the right balance as to how to support them in a way that makes their mental and physical health as stress-free as possible during this difficult time.

Be honest with each other

There’s no sense in tiptoeing around the truth. If your loved one has a life-threatening illness, then it simply can’t be ignored. If there are children who will be affected by the illness, the truth shouldn’t be kept from them either. We live in a culture that still treats death as a taboo subject, which makes talking about it even more difficult. But it shouldn’t have to be that way.

“Death is an inevitable part of all our lives, and yet in modern society we have become far more distanced from the first-hand reality of it,” chief executive of Sue Ryder, a bereavement support center, Heidi Travis tells BBC. “It’s really time to open up a national conversation on death and dying with greater education and dialogue.”

While the illness shouldn’t be the only thing that’s discussed during this time, having conversations about it (instead of fearing the talks) will help everyone. It may not lead to acceptance of the illness — but it will help eliminate the stigma surrounding sickness and death.

Allow your loved one to feel their feelings

Until you’ve been diagnosed with a life-threatening illness, you’ll never truly know what that type of information does to a person. With this in mind, it’s important to allow your loved one to feel their feelings — all of them. If they’re feeling rage, anger, sadness, fear, guilt, cheated, or any other emotion, the best way to support them is to let them feel it all and actively listen to everything they’re saying. It’s important to realize that there’s no right or wrong way to grieve. Being given such news can bring out parts of your loved one that you may have never seen before.

“Let them feel what they want to feel by ensuring they are comfortable around you,” CEO of Grief Coach Emma Payne tells TZR. “But remember, everyone mourns differently, so be there for them whichever way they choose to cope (unless it’s dangerously unhealthy) … simply listen and sit with them as they grieve.”

If your loved one is dying, you can’t change that or take it away. But you can give them all the space they need to mourn their impending passing. Talk about everything they need to say before it’s too late.

Ask your loved one who they want to notify

Because of the taboo surrounding death and life-threatening illnesses, make sure you get the okay from your loved about who they would like to know about their sickness — and whom they’d prefer to keep in the dark. Not everyone is comfortable sharing such news, just like not everyone is comfortable receiving such news.

“Some people want to tell their story over and over again to each person — it helps them process their feelings,” associate medical director for Capital Caring, Farrah Daly, M.D., tells WebMD. “Others don’t want to relive the experience and would rather someone explain things for them. There’s no one right way.”

Even if you disagree with your loved one about certain people knowing that they’re sick, this is not your journey. While anyone who knows and loves someone with a life-threatening illness is involved, ultimately, this isn’t about you; it’s about the person who has the illness. Do right by them and only tell those whom they want to know about it.

Come up with a schedule

Depending on how far the illness is, there may be a need for a schedule for family members to stick to make sure your loved one is as comfortable as possible. For example, on Tuesdays and Thursdays, someone might be in charge of taking your loved one to doctor’s appointments. On Sundays, someone can bring over food for a few days so the person who is ill doesn’t have to think about preparing meals.

“Don’t wait for them to ask,” Dr. Varun Choudhary tells Bustle. “Instead, offer to help by bringing over dinner, shopping, gardening, etc.”

When people are very sick, they sometimes forget to take care of themselves because their mind is someplace else. Creating a schedule that everyone agrees works for them to make sure your loved one has food, takes their medication when they’re supposed to, and never misses a doctor’s appointment, creates an entire network of support so no one feels alone during this heartbreaking time.

Help them achieve any final wishes

If it looks as though your loved one is coming to the end of their life, then it’s time to have the very difficult talk about end-of-life wishes. In addition to helping them get their affairs in order so they don’t have to worry about how their last will and testament will be received by beneficiaries, you also want to talk to them about things they didn’t do, but might still want to. They’ve never seen the Pacific Ocean? Then it looks like it’s time for a road trip. They’ve always wanted to see the Red Sox play against the New York Yankees? Well, buy some tickets and get ready to heckle the opposing team’s fans (and enjoy boxes and boxes of extra salty popcorn).

Of course, not all wishes can be granted. But those that can fulfilled? Do your best to honor them for your loved one’s sake.

Allow yourself to grieve

Although you should try to avoid grieving in front of your sick loved one, it’s only natural to grieve what you’re going to lose — and grieve what your loved one is losing too. Grief is complicated. While your grief is going to look very different from the grief of your sick loved one (because you’re grieving different things), you shouldn’t try to suppress your feelings. People can’t be fully present and supportive if they’re hiding from their own feelings.

“Many people say they are feeling a heavy sadness — and what they’re describing is grief,” thanatologist David Kessler tells The Guardian. “We’re grieving the world we have lost: normal life, our routines, seeing our friends, going to work. Everything has changed. And change is actually grief — grief is a change we didn’t want.”

There will be okay days, and there will be bad days, but rarely good days as you support your loved one through this. You can’t undo reality. But as long as you stand by them and give them all the love and support you can, then you will have done right by them — and you won’t regret what you should have done differently down the road.

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Before your real funeral, you should attend a “living funeral”

— At this event, you’ll be around to hear the eulogy.

by Alexandra Keeler

  • A “living funeral” — also known as a “living wake” — is a ceremony held for a person who is still alive.
  • The living funeral has cultural roots in Japan as well as in long-held indigenous North American traditions.
  • While living funerals can ease fear and anxiety about death, traditional post-mortem funerals retain an important role in the grieving process.

“What a waste. All those people saying all those wonderful things, and Irv never got to hear any of it.”
— Mitch Albom, Tuesdays with Morrie

Death is inevitable. It is out of our control. But how we die is within our control. One way to reclaim some measure of control over death is by way of a “living funeral,” also known as a “living wake” — a ceremony held for a person who is still alive, often to celebrate their life and legacy while they are able to participate. Unlike a traditional funeral, it is a way for the person to say goodbye to loved ones and to be able to smell the flowers at their own funeral.

These events are often planned with the help of a “death doula,” who can provide guidance and support in creating a meaningful ceremony that reflects the individual’s wishes, values, and beliefs. The word “doula” is derived from the Greek term doulē, which means “female servant.”

A death doula is a trained guide who can provide  a holistic, community-based and personalized end-of-life experience. They work alongside medical and palliative care professionals rather than replacing them. Their training can include knowledge of the biological, psychological, social, spiritual, legal, and ethical aspects of end-of-life care. Overall, death doulas can help to alleviate the collective fear of death and promote greater peace and understanding in the face of this universal experience.

Where did living funerals come from?

The specific origins of living funerals are difficult to trace, as rituals like these have developed independently in different cultures over time.

The Lakota Sioux have a tradition of the living funeral in which they repair relationships or make amends, distribute family heirlooms, and eat traditional foods as a way of purifying and preparing for death. Near the time of death, family, friends, and neighbors gather to say farewell.

A living funeral is for the dying, while traditional funerals are for the survivors.

Anishinaabe people in the Great Lakes region of Canada and America also honor their dying loved ones with end-of-life ceremonies. A pipe ritual is commonly conducted by a spiritual leader to guide the person’s spirit to the spirit world. The sacred pipe is a revered tool for communication with the Creator, and during the ceremony, tobacco is smoked to express gratitude for life and creation. The dying person makes amends with the Creator while family members pray for their safe passage. Sacred medicines are burned, offerings of food and cloth are made, and loved ones sing sacred songs to ease the pain of the dying until their spirit leaves their body.

The Japanese have a non-traditional practice called seizensō, which means “funeral while alive.” According to cultural anthropologist Satsuki Kawano, this gives the elderly a novel sense of independence, countering negative perceptions of aging and the elderly. Due to various societal and economic factors, Japan’s traditional respect for elders is eroding and ageism has become a problem. Seizensō challenges the notion that the elderly are passive or burdensome members of society and emphasizes the importance of shaping their own lives and legacies.

What does a living funeral actually consist of?

Planning a living funeral is very personal and customizable, and the specifics can vary. The ceremony can be held in various locations, including a person’s home, an outdoor spot, a favorite restaurant, or any place of significance. Guests can bring mementos that trigger memories and stories, informal speeches can be made, and a designated friend or officiant typically orchestrates the activities. The sequence of events can include any variety of activities that reflect the individual’s personality and interests, but food, videography, music, art, and visiting the final resting place are some common choices.

One of the most important aspects of the living funeral is making the dying person feel comfortable and cared for. BJ Miller, a palliative care physician at the University of California-San Francisco Cancer Center, said in a 2015 TED talk, “So much of it comes down to loving our time by way of the senses — by way of the body; the very thing doing the living and the dying.” He urges people involved in end-of-life care to consider the bodily senses of the person who is dying. He recommends creating a pleasant and comforting experience for them that takes all of their senses into account and honors their dignity. He describes one elderly woman’s request to feel her dog pressing its nose against her skin.

Death doula Alua Arthur emphasizes creating an ideal deathbed as part of the living funeral ceremony. She advises making it comfortable, aesthetically pleasing, and sensually enriching by including favorite scents (incense), colors (pillows, art, flowers), and sounds (singing bowls, music).

If a ceremony is intended to help the person nearing the end of their life overcome anxiety about death, one of the events might include a guided meditation that walks the dying person through a visualization of their own death. Visualization techniques can be used to induce a sense of calm and connection to the natural world, and can help one to confront and come to terms with one’s own mortality. One such visualization guided by death doula Brooke Manning involves imagining oneself in a peaceful natural setting and then visualizing a metaphorical representation of life as a light within the body. This light is then imagined to sink down into the earth, joining up with lights that represent other people’s life sources, creating a sense of connection to the universe and fostering a deep understanding of one’s place in the world.

Informed consent should be at the center of a living funeral ceremony. It is important to ensure that the person for whom the living funeral is being planned has autonomy. A living funeral can also be an emotional experience for everyone involved, so it is important to ensure that the person and their loved ones are emotionally prepared for the experience.

Any decisions made should also be respectful of the person’s cultural, religious, and personal beliefs. To ensure that the ceremony appropriately reflects this, it is important to involve doulas who have the necessary cultural and spiritual knowledge, so it’s often helpful to select someone who approaches this work through a polytheistic lens.

One of the main decisions when planning a living funeral involves the timing of the ceremony. While it is a personal choice, and there is no specific requirement, most people choose to have a living funeral when they receive a terminal diagnosis or when they feel that their death may be approaching. However, others may choose to have it earlier to proactively participate in the event, enjoy the celebration of their life, and have meaningful conversations with their loved ones while they are still able to do so.

Living funerals can’t replace the real thing

Unlike in a traditional funeral, a living funeral allows the central figure to speak, hear others speak, take part in rituals and rites of commemoration, all while in the presence of supporters as witnesses. It is a collaborative and personalized ceremony that empowers the person of focus with agency during a time when their control is slipping away.

Psychologist Dr. Nick Capaul, who specializes in grief and loss, explains that an appropriate way to think about the difference between the two types of funeral, is that a living funeral is for the dying, while traditional funerals are for the survivors. Although both are beneficial, the latter is often still required for the bereaved to gain closure. In his experience, when families opt for a living funeral instead of a traditional post-mortem funeral, other family members or friends of the bereaved push back. They almost always want a traditional funeral. When people are robbed of their opportunity to confront and process death, people can experience what is called “disenfranchised grief.” In reference to grief, disenfranchisement means depriving someone of their right to grieve. Dr. Capaul believes that a living funeral does not include the element of loss, and if there is no loss, you are not truly confronting grief or processing death.

Dying individuals are often isolated due to illness or conditions that limit their communication and mobility, while friends and family may also avoid interactions due to discomfort and cultural taboos around death. A living funeral can provide one last party, similar to an Irish wake. In general, while being around a person nearing the end of their life can be emotionally challenging, creating more opportunities to spend time with them can be beneficial for everyone involved.

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